After the death, we enter the very new and complex world of grief. We’re grievers! With the understanding that we all grieve differently, there is one thing for certain. Some, as was my case, will grieve much deeper than others. And therein lies a problem. Many of us will get caught in a little known, understood, or talked about grief trap. Emotional suicide! After Annie passed away, there wasn’t many days that went by for the first three years that I didn’t commit emotional suicide. I was guilty of getting caught in a trap that I had no concept of. It was all consuming–the five hundred year flood, so to speak.
What is emotional suicide?
This paragraph could easily be consistent with a person committing emotional suicide: quite frankly emotional suicide is living in misery–always, and I do mean always, thinking about and revisiting our loss, and not leaving any room for hope. One gets locked into the world of pitiful thoughts, and just stays there. Our focus is usually on the bad, and we’re unable to see or realize that we’re always stumbling deeper and deeper into a world of darkness, and therefore we have no way of escaping the pain and torment.
Most things we see represents the darkness in our life. And at that point we’re on the road to self destruction. Some people turn to alcohol or drugs to try to ease their pain, but the truth is, it will only make it worse in the long run. You can run from grief, but you can’t hide. After all, it’s pitched a tent inside of your head, and until you kick it out, it has no intention or reason to leave. Your sorrow becomes its comfort. Remember, in almost everything we do, and no matter where we are, happiness or wanting to be happy is being blocked at every turn by our grief. It’s a horrible place to be—if you loved deeply, it follows that you’re going to hurt deeply…And that’s just the way it is!
In my case, family and friends would come to my home, recognizing my unhealthy lifestyle and try to lift me up by inviting me out to family gathering or other events. To me, they thought they knew how I was feeling, when in reality they had no concept to the depths of my despair. Why would I want to go out with a bunch of happy people expecting me to be happy when all I can think about is my loss? And what’s happy about that! So instead of trying to pull myself out of the darkness, I alienated myself from my family and friends, shutting the door on almost everyone. They became nothing more than nuisances, a bunch of people that didn’t get it. Some would say to me, oh Bob, you’re just depressed over your loss, which in my mind was the understatement of the year.
My life was spiraling out of control and way beyond the world of depression, as when one loses all hope, one is approaching the point of no return. It is thought that depression is the leading cause of emotional suicide, but guess what, grief drives depression to a much higher level of despair, and over time can shorten one’s life span through some self-destructive behaviors…like, not taking care of yourself. There is little room for error, and a weak/unstable safety net for those of us that were, or are committing emotional suicide.
Escaping Emotional Suicide
We are kidnapped by our grief and taken to a place where we’d rather not be, and locked up in a world we don’t want to be in, and see very little opportunity for escape.
So here’s my question to you. Metaphor! What would you do if you were kidnapped by someone, taken out into the woods and locked up in a an old shed with no water? Would you try to escape, or just give into the fact that you were now a victim and just going to set there until you were released or died of thirst? Yes, you could argue that I’m mixing apples and oranges with this metaphor, but the concepts are the same. Personally, I would try to do everything I could to break out of that shed. So why didn’t I do that when I was grieving? Why did I turn everyone away? As I now know, my home was my shed, and all those people that tried to help me were the door I needed to walk through to escape, even if only for an hour or two.
We have to try to break the hold grief has on us, and by doing so we are lessening the chance of committing emotional suicide. Think of it this way. When I was on lock down in my home, everything I saw every day, was the same thing–it never changed from day to day. I was totally locked in a world of sorrow, sadness, and many unpleasant memories. Of course, my home represented many good memories Annie and I made together, but to a griever, those memories are hard to come by until we break the hold grief has over us.
I think I should have spent more time with the happy people, had what fun I could, and celebrated her life, rather than wallow in her death. Please don’t misunderstand what I’m saying…we have to grieve to get better and there will be plenty of grieving. But, it’s also imperative that we break the emotional suicidal hold grief has on us, and we do that by changing our routine. Perhaps, doing things differently once in awhile. If you go out for two hours, and part of that time you’re not thinking about your loss, you are breaking the cycle of grief. Any good that comes from your two hour break starts from your head and flows down through your body with a certain and much needed healing effect. A normal cycle of grief for many grievers is basically 24/7. They go to bed with it, and wake up to it. I certainly did.
Four months after Annie died, I flew out to Northern California to visit with my family, some friends, and do some fishing. My thoughts were that if I took a break for a couple of weeks, and got a much needed change of scenery things wouldn’t feel so bad. So I put on a mask and tried to run from my grief. To my surprise, for a few days me and my mask did okay. Then one day the mask fell off, and all I could think about was, “I want to go home.” Then on the plane ride home it hit me. When I get home Annie won’t be there and our normally warm and cozy home, is no longer going to feel that way either. And it didn’t–I walked straight into the arms of extreme loneliness once again.
Unknowingly at the time, the trip gave me some much needed hours of escaping the heavy grief, therefore, breaking the cycle of grief a bit. Although that didn’t change my overall battle with grief, it did give me a chance to build up my emotional reserves needed to fight the extended emotional battle I was in with grief.
Emotionally grief will drain you, or as some would say suck the life out of you, if you let it. When that happens to a normal griever, we have the ability to fall back on our emotional reserves to get us through the tough times. But at some point when committing emotional suicide through our continued visitation with our loss, our emotional reserves can be used up too, and when that happens, we hit the old proverbial rock bottom.
So as I see it now, it’s not only important, but imperative that we find ways to distract ourselves in an effort to break the cycle of grief, if only for a short while. During that small break from grief the body will start to heal. Yes it will be a vicious circle, and you will go round and round on the merry-go-round for quite possibly a long time, but after spending three long years in grief, and experiencing healing in the fourth, I know what needs to be done. I only wish I had of known back then. My grief would have been easier, not as complex, and I would have been able to kick that squatter out much sooner, that was camping out in my head.
I suffered terribly from grief because I didn’t have the tools and lacked the understanding to help myself heal. I was relentless in facing my worst fears and nightmares head on, on a daily basis in an effort to heal. My theory was, what hurts you the most, will in the end be what heals you. And as I’ve said before, it take’s grief to heal grief. And that’s all true, but I should have been taking a break from my grief through creative distractions, giving my body a chance to start healing. Instead, I chose hand to hand combat with grief on a daily basis, which is not a good idea, and in my case did more harm than good. I stayed the course, but now know I was committing emotional suicide.
When I talk about my grief, I have no regrets. I was doing everything I could to survive. However, now that you’ve read this article, I hope it helps you and you get the message loud and clear. Don’t stay in the trenches too long, you have to get out and take a break, do something for yourself. Take some “me time.” I know it won’t be easy, and then there is the guilt factor, grief in disguise, but as messed up as I was, if I had it all to do over again, I would have walked through that shed door into the arms of some happy people. People that loved and cared about me. It won’t change your grief, but over time it will help your body heal. That’s so important to your future well-being.
When writing articles on grief, my focus is on two things. Me and You. I assume, which may or may not be true, that if you’re reading this article you’re likely suffering from a loss, or you’re anticipating a loss. Either way, many of the effects and emotions can feel the same. Doom and gloom cannot be sugar coated, no matter what you call it. It’s painful losing a loved one, and the heartache we suffer is very real. Until I lost Annie, I would never have read an article on grief. It’s a real downer. But to a griever that doesn’t seem to be the case. Perhaps, that’s because we’re already approaching the lowest point in our life, but need to go a bit lower, always searching for answers, seeking an understanding where there is none. Death will have that profound effect on you. And I want to say to you, “I’m so sorry for your loss.” I lost my precious “Annie” four years ago, and I guess that was the day the music died for me. Please don’t despair, in this writing there is hope.
The Day The Music Died
In the early days before the cancer, words to our favorite songs, even the sad ones, were innocent enough, but what happens when the music dies. Those same words become sad, lonely, and take on a whole new meaning. The depth of sorrow we feel listening to our old songs that we shared, is driven down and down. It’s like a bottomless pit with no ending. Realistically, how can we listen to the music we shared without falling into that pit. Simply put, we can’t.
Here’s the real truth behind the day the music died. Since Annie died, it follows that the music had to die too. Unknowingly, listening to a loved one’s dead music, is one of the best things we can do. Through the depths of our sorrow, the music is driving us further into the darkness of the bottomless pit, but, over time the resilience of our body kicks in and we find ourselves clawing and scratching our way back out of the pit, and into the light. We are healing! I know now that it was imperative that I hit rock bottom, as when I started leaving grief behind, “I was being released from its clutches.” It’s so true, “It takes grief to heal grief.” There is no other way…We must suffer in order to heal.
It seemed to me, that during the initial stages of my grief, the whole concept was based on looking back, and wondering how things could go so terribly wrong. I didn’t question what happened, I knew what happened. She got cancer, and died. What troubled me the most was, how did we let it get that far, before cancer brutally led us to the understanding of, just how precious life was. Annie and I always loved each other but we were so busy working and planning for our retirement we sort of forgot about “Today.” We were living in “Tomorrow.” Quite simply put, we were chasing an illusion. And grief used the illusion to hurt me deeply.
Annie would say to me, “Let’s take a short break and go to Hawaii.” She took a trip there with her sisters and loved it.
Instead of going, I’d encourage her to go spend time in Los Angeles with her sister Lesley while I stayed home and ran our business. Then when she came back, she’d run the business while I went to Nor Cal and spent time with my family. I know, when a married couple are living together and working together 24/7, having a short but separate vacation is considered healthy to the marriage. And it may well be, but grief doesn’t see it that way. The regrets I had for not taking the time to do the little things in life with her, ripped me apart. As hard as I tried I couldn’t justify my actions or defend myself against the relentless and unforgiving grief. And you won’t be able to either.
Imagine, within a week of Annie’s diagnosis, we shut down two small businesses, and I became a 24/7 caregiver for thirty months. Cancer immediately put life in perspective, and it didn’t take me long to realize, we were never promised a tomorrow, so why try to live there. And yes, good old grief reminded me of that every day.
So I say to you, if you have an opportunity to do something special with, or for a loved one, or simply someone very special and dear to your heart, do it. Don’t live in “Tomorrow.” It may well turn out to be an illusion, and you might not get a second chance.
Four years later, I still shed a tear or two now and again when listening to our music, looking at our pictures, or perhaps just thinking about her. But the music is no longer dead, the pictures are special, and are simply a reminder of the life and love we shared together.
Goodbye My Friend (by Linda Ronstadt)
“Oh we never know where life will take us, I know it’s just a ride on the wheel,
And we never know when death will shake us, And we wonder how it will feel.
So goodbye my friend, I know I’ll never see you again, But the time together through all the years will take away these tears, It’s okay now, Goodbye my friend”
Is Grief Dangerous–The Broken Heart
Absolutely–Some folks, although probably rare, don’t survive their grief. And that’s why it’s so important that when grieving you pay close attention to your body. If you can get regular check-ups, please do.
This Happened to Me
After being Annie’s caregiver for thirty months through an intense cancer, she died! And I’m going to tell you something—I never saw the bulldozer pushing the grief my way coming at me. It absolutely engulfed me, then stranded me in no man’s land. The place where there appears to be nothing more than sorrow, misery, and a million questions without answers. My heart was broken.
Four months after Annie’s death, I started having heart arrhythmia problems. I kind of blew it off as my being, so sad, and generally overwhelmed with my grief.
One afternoon while looking at grief posters, I saw one of a broken heart. That’s when my light bulb came on, and the question came out. Can people really die of a broken heart?
A few days later I went to Heartland Cardiology to see Annie’s long time cardiologist and friend Dr. Assem Farhat. I’d know him for years too. When he came into the room, I simply looked him straight in the eyes and asked him the question. “Has anyone ever died of a broken heart?” His reaction and response was immediate, “Bob, that is not an option.” Again I asked the question and got the same response. After listening to my heart he went on to say that some folks come here, we can fix their heart problem, but due to their grief they really don’t want help and will just go home, lay down, don’t take care of themselves, and some simply go to sleep and die, or have a heart attack that results in death. So the answer to my question was “Yes.”
Just think! My problem was discovered in the fourth month of grieving, with my heaviest grief period being over the first three years. If I hadn’t been placed on heart meds when I was, it’s possible I would not be here today. Make no mistake, my grief was very long, challenging, and sometimes I was afraid I was going to die, then ten minutes later I was afraid I wasn’t going to die. Really insane! Still, my heart wearing down was due to my intense caregiver duties over thirty months, witnessing so much trauma, pain and always dealing with anxieties over all the various unknown entities. And of course the grief and heartache I was feeling was simply intensifying the problem, in a sense trying to finish me off. I suspect it would have been easy for me to lay down and give up on life, while listening to the whispering voice in my head continually filling me with despair. But I didn’t, and instead chose to fight back.
Over time I learned to fight back by taking control of my grief and not letting it control me. Sounds difficult, but it really isn’t. I continued to do the things that hurt me the most. Beyond the music, I started spending time looking at photo albums, invoking memories that I really didn’t want to have at the time, but need too. It just made sense to me—the things that hurt me the most, would in the end be the things that cause the biggest out flow of emotions, allowing me to start healing. I’m really glad I got my problem seen to…Dying, was not an option. I want to live, laugh, and perhaps love again.
Nope, life will never be the same, but I will no longer pity myself. I’m here, and Annie who lived and loved her life, is gone forever. “Death Is So Final.”
Annie’s online memorial
If you haven’t read Hospice Party Part 1, perhaps you should, as this article, Hospice Party Part 2, will put the article in perspective and lead to an understanding and education for some.
Let The Conversation Begin–End of Life Care
I knew I was being a bit deceptive, but sometimes it can be a delicate balancing act, between honoring the doctors wisdom, and the wishes of the patient. I always did what I thought was best for Annie and rarely second guessed myself. I knew with all the negative information coming in, the bleeding, and then hospice, Annie had to feel as if her life was out of control. My job was to get her to refocus, in understanding that at the moment, medically speaking, we were still in control over her destiny. I was performing a delicate balancing act at the moment; but I’d been doing that for twenty-nine months, and it was nothing new or complicated to me. As long as I stayed strong and supportive of her wishes, without flinching, it would help with her anxiety.
Annie knew hospice and comfort care were two different entities based on my perception and how I identified them to her. She also knew that before hospice could do comfort care, she had to be on hospice, which she now was. Comfort care is what I called “End of life care.” Once started, there is no turning back and the patient will pass from the administration of liquid morphine over time, or perhaps die from their specific illness or another related illness. No death certificate will say, “morphine induced death. (This will be explained in a couple of paragraphs later on here).
All I could do now was play it by ear. It would now be a minute by minute, hour by hour vigil. I emptied her Ostomy pouch several times a day and always checked her urine for blood. I’d have a good idea when the time was near. At the moment, I didn’t have the power to choose death over life, and that was exactly as it should be. I loved Annie more than most people will understand, and felt I was being guided, or my decisions were being influenced by a greater power. The rest of our journey needed to be focused on loving Annie; helping her relax and making her comfortable.
October 23, 2010: Today was a bitter sweet day, as Leslie had to return home and get back to work. Annie was truly going to miss her, but thankful for the time they had together. I assumed, as did Lesley, that Annie didn’t have much time left, but we really had no way of knowing for sure. Leslie worked for the Los Angeles school district and without certainty that Annie’s death was imminent, she had to return home.
Personally, I think it was a blessing for Lesley. She loved Annie dearly, and watching her pass away, in my opinion, was a memory she didn’t need. She would be able to hang onto the fun times we all had during her visit, and the good memories they made.
This afternoon a hospice nurse came over to talk to us. She had a brown paper bag in her hand that held the liquid morphine, liquid Xanax, and liquid atropine, which would be the comfort care medications I would be using when the time came. One of the first things she did after our warm greeting was take me into the kitchen and give me instructions on how to administer the medications.
Here’s the instructions I was given. The liquid morphine, 20 mg dose, was to be placed down in her cheek area beside her tongue, and once started, it had to be administered every hour on the hour without fail. There would be no turning back. Liquid Xanax was placed in the same manner at the same time, every hour on the hour to deal with any anxiety. Ever wonder why they give the caregiver atropine? It’s for the death rattle when it starts, and believe me, it’s a very distressing and unpleasant sound. Atropine will relieve the distressful sound in about 10 minutes or less.
The nurse sat on our sofa, while Annie and I sat across from her on the hospital bed. Things were going fine for a while, and then we hit some turbulence.
She said “I’ll be coming over twice a week to check on Annie.”
I asked her what she’d be doing when she comes over.
She stated that she’d be checking her vital signs and general health.
I asked her what I was supposed to do if Annie started having a major bleeding event while she was not there.
Just give me a call and I’ll come over.
But, “You’re over twenty minutes away, and if it’s in the middle of the night, probably longer.”
Her words…You can go ahead and start her on the morphine as you are a competent caregiver.”
This is what I told the nurse in general terms.
If Annie starts a major bleed in the middle of the night, there will be no need to call you as it will be too late. All I will be able to do is hold her and love her through it. As far as her vitals go, I can do that, I do it all the time. I already knew she couldn’t have platelets or blood, which was an issue to me, but not going to change my decision on hospice. What was boggling my mind was, there are one hundred and sixty-eight hours in a week, and if I was only going to see the nurse for two hours a week, what did I need hospice for? What were the odds of a major event, which I knew was coming, happening while she wasn’t here? My calculations put it at 98 percent. This all evolved because I was a competent caregiver. I may be competent, but I’m still human, and I was very worried and afraid of what potentially would be a very traumatic event. I had never seen a person bleed to death from cancer, but Annie’s nurse and good friend Beverly, had seen a few. My goal was not to let that happen, but it seemed I was going to be on my own. Apparently, I would have to make the decision when to start comfort care based on what I knew. So far I was comfortable with the decisions I’d made thus far, so I was just going to have to use my best judgment.
there are one hundred and sixty-eight hours in a week, and if I was only going to see the nurse for two hours a week, what did I need hospice for?
It’s difficult having and end of life conversation, when the person that’s going to pass is your loving wife, and she’s sitting right beside you as the details of her impending death are being discussed. Yes, I could have found a better way, such as taking the conversation outside, perhaps on the phone, or even another room. But, what’s the point, at this point there is no point. Annie knows that the train has left the station and is not coming back. It was now time to be honest, and somehow find the courage and wisdom to put forth a plan built on integrity to help her through, what to her must be very traumatic times. I surely was feeling the chaos and trauma, so what must she be feeling. All I knew at this moment, was that I had to somehow take control of this situation.
I thought hospice would be playing a much greater role in her care, and that I’d see the nurse on a regular basis; moreover, she’d help me make that death verses life decision when the time was right. She could warn me of any impending signs that I may have missed and I could take the appropriate action. What was going on with Annie was not your typical hospice case. Therefore, if I’d started administering her the comfort care drugs before the signs of the impending event, that can only be called assisted suicide. Giving her baths and checking her vitals were not necessary, as I said earlier, Melissa and I took care of all her hygienic needs.
It wasn’t going to work that way for me. I was starting to see, I was clearly going to be on my own with Annie, and to start preparing myself for the tough decision I would soon be making. At that moment something very strange happened to me. It was like something slapped me on the back of my head, and said, “What are you making such a fuss about, I will let you know when it’s time.” Maybe the mysterious voice, which may have been my emotions, helps explain the reasoning behind what I was about to do.
I said to the nurse, “I’m going to put everything on hold for now. We’ll see Dr. Moore Sr. on Tuesday, and I want his advice.”
The nurse said we could no longer see Dr. Moore Sr. as Annie was now on hospice and their responsibility.
I guess I was just having trouble letting go of Annie, as at the moment everything was so conflicting. So I told the nurse, regardless of the consequences, as I was not withdrawing her from hospice, I was taking Annie to see Dr. Moore Sr. on Tuesday morning. I knew it could potentially create an insurance issue, or she could have a catastrophic event over the next couple of days, but it was a risk I felt I had to take.
Annie was in a very precarious situation and it truly was quickly turning into a nightmare, but as I was seeing it, the pieces to this puzzle weren’t falling into place. At the moment Annie was aware of her circumstances, but was not bleeding. I couldn’t just put her to sleep, and it was obvious, the odds of hospice being there to catch any impending signs was not going to happen. In my heart, I knew I was making the right decision for Annie, and no matter what happened, I was at peace with it. Annie never said a word; she just sat and listened. I knew what Annie wanted.
I made this statement a couple of times before, that a part of Annie was becoming a child. After the nurse left, I wheeled her into the dining room, to sit at the dining room table with me.
She looked at me, and in her excited little voice said, “Bobby, if I take my medicine, I’ll get better, won’t I?” Then again, “Won’t I Bobby?”
“That’s the plan Annie.”
Her statement overwhelmed me. All I felt was a sensation of total love for the person that just spoke to me. Every time she took on her child like personality, I called her “Little Annie.” I knew Little Annie was out there, as she had popped out a few times before. But not to this extent! Now I would be watching for her. What a treasured moment!
October 25, 2010: Today, we had to go over to Heartland Cardiology to see Dr. Farhat. Her heart was working fine with no real problems; but he was concerned about her platelet count. Dr. Farhat and Annie visited for a while about the hospice issue and her general health and well-being.
Dr. Farhat had been Annie’s cardiologist and friend for 12 years or so. Getting one last visit with him, even though it wasn’t said, “they were saying goodbye to each with a hug.”
His comment on hospice was; “It’s a choice that we all might have to make someday, and it’s going to always be on an individual bases and circumstances.”
Then he looked at Annie and basically asked her if she knew why she was still alive. She just stared at him and he pointed at me. He told her, “There’s is absolutely no doubt in my mind.”
Just imagine, I had the power of attorney allowing me in certain circumstance to decide if she should live or die. That’s dangerous! I guess what I’m saying to you is, if you give someone a durable power of attorney to act on your behalf when you can’t, like the one I had, make sure you know them well and trust them. Write a note, or just make it clear what your wishes are. Annie trusted me, and as difficult as it was at times, I kept my word to her. But here’s the deal; if Annie had of wanted me to let her go gracefully, I would have. I guess I am a freak for wishes, but I believe in the sanctity of human life, and all that goes with it…empathy, compassion, love, and their wishes.
By the way, our last summer together as it turned out, was the best summer of my life! One I shall never forget. That one decision I made back in February, allowed us to love each other, “One more time.”
October 26, 2010: We made it! We were going to see Dr. Moore Sr. This is kind of how our life had been the past thirty months. When we got there, we went straight back for a CBC, and then back to the waiting area.
When the nurse came to get us and I was wheeling Annie into her room, I noticed Sarah, Dr. Moore Sr.’s nurse standing down the hallway near Dr. Moore Sr.’s office. She was looking over her shoulder at Annie and me with her hand behind her back, waving at us. I remember thinking, that was rather odd.
Apparently, this morning Dr. Moore Sr. was in a staff meeting, and one of the other oncologists walked over to him and said he was sorry to hear about Mrs. Harrison passing away while she was in the hospital, and he was out of town. As you can imagine he took the news a little hard.
When he got to his office that morning, he went straight to Sarah and told her the news. He asked her to call me for confirmation.
She said she wasn’t going to call me; if Ann did pass away, Bob would be grieving, and she wasn’t going to bother me.
According to Sarah that went on until lunch time. She told me Dr. Moore Sr. finally gave up, saying in a gruff voice, we will just have to wait and see if she shows for her 1:00 P.M. appointment then, won’t we!
Sarah said, “I guess we will.”
What Dr. Moore Sr. didn’t know was that Sarah immediately checked with someone after he initially spoke to her, so she knew Annie was alive. She was just having some fun with her boss.
When Dr. Moore Sr. came into the room, he was laughing and grinning from ear to ear.
He said, “Hi, Momma!”
He then asked her if she wanted the good news or bad news first.
Annie said she wanted the bad news first.
He told her rather nonchalantly with a strangely curious look on his face that her platelets were “0;” and that she didn’t have any. That is catastrophic!
He carefully examined her mouth, and could see where she’d been bleeding, but wasn’t bleeding at the moment. He basically said that she had a relapse from her transplant, and failed her reintroduction of a very low dose of Velcade. He further stated that he was sending us over for a transfusion of platelets, and if they didn’t work he’d have her there over the next several days on an outpatient basis. He also told her that he had ordered the blood bank to resurrect the HLA compatible list and to get HLA donors in for her. HLA platelets are a close match to hers, and she had them before. They would usually give her a little boost, but it seemed to disappear overnight.
I think I had just sat in on one of the most amazing conversation, or lack thereof I’d ever heard. He just casually told her she had no platelets, and she took it like it was no big deal. For that moment it seemed like their minds were locked together, like “so what.” “What else is new.” I was speechless. I guess I expected a stronger reaction from the both of them. But that wasn’t the case. It was “just business as usual.” Heck, I didn’t even know there was such a thing as “0” platelets.
At this point, I walked Dr. Moore Sr. through my conversation with hospice, and told him the only way Annie could have transfusions was to withdraw from hospice. I don’t think he knew she was on hospice. He was a wonderful caring doctor, and kept good eye contact, listening to me carefully, making sure he understood what I was saying. Once I finished, I felt a great relief come over me. I was out of the equation for the moment.
He asked Annie if she understood what he and I’d had just talked about.
Her answer was a straight forward and simple “Yes.”
He then asked her what she wanted to do.
She said, “I want to fight.”
He put his right hand up to his face, thumb under his chin, with his fingers sticking up and whispered to her. “Bob should open up a hospice, he is really good.”
With that, I told him I would call hospice and withdraw Annie, before we got to the infusion center.
He got up to leave, and then started laughing, saying “Ann, do you want the good news now?”
She wiggled in her chair a bit with anxious excitement saying “Yes.”
I looked at her—the sparkle in her eyes was priceless.
He said, “Well, the good news is that you’re still alive.” He stood in front of her and told her the story of her supposed death. We all had a good laugh! That was fun, and we all really needed it.
That was always the thing about Annie. She wanted to fight the disease, and I knew it. I also knew she needed to tell someone competent other than me—someone that was nonbiased. He let her make her choice and she made it. I was now released from the decision making process on whether she’d go on comfort care or not—at least for the time being. Yes, she had “0” platelets, and desperately needed the count to come up. She knew that, however, she only had two choices at this point. (Time to invoke a quote from Shawshank Redemption again.) She could “get busy living or get busy dying.” I was going to fight for her no matter what, and it made me feel once again, the right decision was made. The only difference was “She made it.”
Dr. Moore Sr. was not opposed to hospice; but he was a believer in folks not dying prematurely. At the moment all the signs and science dictated that at some point she was going to start bleeding and could bleed to death. I think he felt as I. We’d deal with that problem when it happened. With immediate intervention I should be able to slow down or stop the process with the morphine. Morphine in liquid form slows the body down rather quickly and with a little notice would tend to ease the bleeding somewhat. I knew this sort of thing happen quite often, and sometimes wondered how many people died prematurely at the time. Yes, it would appear it was approaching end times for Annie, but looking back to February 2010, based on what appeared to be sound medical advice, Annie probably shouldn’t even be here. But she’s here and we have to deal with the situation as it is, and not look back to what it was. (Keep in mind I view life as precious, and I believe everyone deserves a chance to move forward as long as they can. Two bags of platelets could shoot her count up 30,000 and although still critical and highly unlikely it has happened before. So throwing in the towel is not always not the correct option.)
After we left the Cancer Center, I called hospice and withdrew Annie. While Annie was getting platelets, I called her case manager in Colorado and explained the situation to her. She knew me well, and my commitment to Annie’s best interests was never questioned. She was okay with Annie’s decision.
Kenny Chesney, a famous country singer wrote a song with the lyrics, “Everybody wants to go to heaven, but nobody wants to go now.” Annie was a classic example of that song.
After the transfusion, we had to wait an hour for the results of the platelet count to come back. They were at 3,000, which was more than I expected, but nowhere near enough to make a difference. The nurse at the infusion center told us to be back tomorrow morning for more platelets.
October 27, 2010: Annie received another unit of platelets today. When the results of the count came back, they remained unchanged—still 3,000.
These were very sad times for Annie and me, and it appeared we were fighting a losing battle. She also received one unit of red blood cells, and would get another unit when we came over tomorrow for more platelets. This was all being caused by the cancer in the bone marrow. With no treatment options available, transfusions become useless. In other words, the patient becomes refractory, and transfusions no longer work. Her body would becomes resistant to whatever they tried.
In the beginning it was difficult for me to understand how a woman that seemingly did most things right regarding her health, was diagnosed with such a rare cancer. Now, piled on top of that, it seemed the thing that was going to bring her down, was the rarest form of death by that same disease. There were so many “what ifs” going around in my mind, it was difficult to focus at times.
That evening, I was sitting at the dining room table and saw Annie shuffling to the bathroom. She didn’t walk properly, as she didn’t have the strength to lift her legs, so she slid her feet along the carpet. When she came out of the bathroom I looked towards her, and noticed she had a very sad look on her face. I must have said this one hundred times through the course of her illness, always with a soft voice.
“What’s going on, Annie?” Her little lips were puckering up as if she was going to cry. I walked over to her and put my arms around her.
She said, “My urine is full of blood.” I didn’t say anything at that moment as there was nothing reassuring I could say.
I took her hand and helped her over to her bed. I then told her I would place a call to the on-duty oncologist, and see what he thought. I spoke to Dr. Reddy again. I told him what happened, and was curious as to the cause.
He said he didn’t know, but that internal bleeding can be caused by many things. However, he made it clear that she was now most likely starting to bleed internally.
I simply told Annie he didn’t know what the cause was and that we needed to keep an eye on it.
Normally, she always let me check the urine after she went to the bathroom. For whatever reason, this time she didn’t let me. I guess she didn’t want me to see the blood.
I knew now, beyond a doubt, we were approaching “end times” for Annie, and going to the hospital was not a option, as they couldn’t help her either. Even if you have normal platelets, with internal bleeding, they have to open you up and stop the bleeding. There was literally nothing anyone could do for Annie.
October 28, 2010: Today Annie received a unit of HLA platelets. While we were waiting for the results to come back, they started transfusing her second unit of blood. Her platelet results were catastrophic under the circumstances. They were now at 1,000. While she was sleeping and getting the rest of her blood transfusion, I checked her ostomy bag. My heart sunk when I got the visual of the bag; it was full of the dark red blood. I motioned for the nurse to come over. When she looked at the bag, I could see her eyes swell, and with a sad look on her face, she said very softly , “Oh no.”
I found myself in a real dilemma. When Annie woke up, I needed to take her to the bathroom and unload the contents of the bag. I knew she was going to see the blood as I drained the bag, but that was another one of those sad realities of cancer, that there was no way to avoid. When I unloaded the bag, as always I was on my knees holding the container for the contents to flow in. As I looked up at her and into her eyes, I could see that she was starring at the blood, and the look in her eyes made me think perhaps she was trying to come to terms with her mortality. But she didn’t make a comment, and nor did I. There wasn’t a single word of comfort or encouragement I could give her at the moment.
When we left the infusion center, the air in the car was so tick I believe I could have cut it with a knife. I think we both knew, the blood we saw in the ostomy bag had just set the stage for what was to come. We were now navigating our way through a new frontier, and our fear of the unknown was driving our emotions.
That evening when I unloaded and changed her bag, all I saw was blood.
October 29, 2010: We went back to the infusion center for more platelets. The results of her count came back at 1,000. There was to be no more miracles.
It was on this day, while Annie was receiving her platelets at the infusion center that she asked me another timeless question in a very soft voice. “Bobby, can I die at home?” I gave her a big hug and told her that’d be my promise to her. We both had lots of tears, as did a couple of the nurses attending to her.
After that gentle conversation, and our emotions had waned, she started staring at me.
She asked me to look into her eyes, and tell her what I see.
After a moment of silence I responded; I see sadness, humanity, and love.
She then asked me to look deeper.
I replied, “Annie I don’t know what I’m supposed to be looking for.”
Her next words, once again were, “look deeper.”
As I stared into her eyes, her eyes were locked onto mine.
Annie, “I see your soul.”
She asked me what that meant.
After a pause I replied. “I see what you are, what you’ve been, and I know where you’re going.
With those words, she started teaching me.
“Bobby, I know I don’t have much time left; promise me you’ll surround yourself with people who love and care about you. If you do meet someone, make sure she loves you and has a kind heart.”
I knew what she meant as she’d made this statement months before. But unlike then, I couldn’t tell her to stop worrying and that everything was going to be okay.
At that point, I asked one of the nurses to keep an eye on Annie while I went outside to get some fresh air. I really could have cared less about the air, but I needed to clear my head. I just didn’t know where to put all this information. It was if there was a cobweb of stuff circling in my mind. But, as I pulled away from those thoughts, I instinctively knew my focus had to be on Annie, and I was going to pull my socks up, go back in that room and take care of her.
All through my life, I watched sad and tragic stories of people dying in movies. I never once considered that would be Annie and me.
Remember: “If you love someone today, try to love them more tomorrow. Life Happens.”
I can’t describe accurately how I felt seeing the blood in her pouch yesterday, knowing what I knew. It’s one of those times when you want to pick the person up, wrap your arms around them and never let go. So much love!
October 30, 2010: Today, we went back to the infusion center for more platelets and was told that after this batch, there were no orders for more. We were to go see Dr. Moore Sr. on Monday for a CBC. I’m sure he was going to give her the grim outlook and in his own way say good-bye to her. I didn’t stay around this day for the platelet results as it no longer mattered. Every time I changed her bag, it was predominately blood, meaning all the blood transfusions she had over the past few days were not making a difference as she was losing more blood than she was gaining.
Things were now starting to pile up on Annie and me. The conversation with Annie about comfort care was now becoming a necessity. I didn’t know how Annie was feeling inside, but I knew it was an awkward time. She didn’t cry over her new reality; and really didn’t talk about it. We did the only thing we could do at the moment: get on with our day. Annie was a proud woman, and even in the face of extreme adversity, always held her head high.
The last date posted in this article was 30 Oct, 2010. Sadly Annie passed away late afternoon of 2 November, but not before she took us on one heck of a ride. She was an amazing lady and fought to the end. I’ve already published a 3 part blog on her death, “Only Love Can Break A Heart.” I’m sure many of you are going to want to see how these last two articles on the Hospice Party played out.
I would encourage you to read them. Very educational, and clearly show you why sometimes hospice won’t work the way is supposed to. At the same time you’ll witness the death of a lady, in a way seldom seen. I was amazed that even while dying Annie was always the teacher, and a true gift to this family and in some cases the world, one that just kept on giving. Also it will offer up the possibility and opportunity for you to care for your loved one at the end, as it is explained in detail. My daughter Melissa did her momma’s comfort with these words; my momma brought me into this world and I can help her out!
Annie has an online memorial, considered one of, if not the best online memorial’s there is. I built it to help me with my grief, honor her legacy, and help others. Her memorial has had over 65,000 visitors.
Also, her story, Because of Annie, can be purchased on Amazon.com in all formats. All proceeds have gone to cancer and will continue to do so.
In the beginning when Annie was diagnosed with terminal cancer, I, like most people didn’t know what to expect. Her diagnosis was so awful, it didn’t leave much room for any good thoughts to flow into my imagination. But I now know the truth. Even when our journey was darkened by the heavy weight and burden of a deadly cancer, we could still laugh, we could still love, and for that moment in time we could still live. Nothing says that better then the quote from the movie, Shawshank Redemption; We have a choice, ‘get busy living or get busy dying.’ And we chose life.
At the moment Annie was fighting a battle for her life. Her low platelets were so critically low, that she was always on the verge of a serious internal bleed, or brain hemorrhage. Our only weapon against low platelets were transfusions of new donor platelets. Which never did what they were supposed to do. Her body’s immune system recognized them as foreign and killed them all, along with some of the few good ones she still had. We were in a dilemma.
In this article you will read about the love of a sister, and how important visits from close family members can be to a terminally ill patient. And you will see my wife Annie, as sick as she was, get busy living. She was living in her innocence, which to me was a surreal world, a mixture of fact and fantasy. For this moment in time, she appeared to be in a zone, a world where there was no cancer.
October 16, 2010: Annie and I took a drive out to Mid Continent Airport in Wichita, Kansas, to pick up her sister Lesley from California. I had called Lesley a few days earlier and told her I thought it was time she started making her way out here. I felt Annie was now on a slippery slope, and sliding down rapidly. When we got to the airport, I got Annie out of the car, into the wheelchair, and pushed her inside where she waited until I parked the car. Annie was very excited and really looking forward to this visit with her sister.
Lesley had came out and visited Annie during the second month of her cancer, August 2008, and saw her again a year later, August 2009. And on both of those visits Annie was sick, but there was no way to prepare her for what she was now going to see on this visit, so I didn’t even try.
Rather than talk about our ride home, I’d like to share a note Leslie wrote me a short time after her visit was over.
“I flew to Kansas to see Annie, not knowing it would be the last time I ever saw her. Bless her heart she was at the airport waiting for me. Shock roared through my heart. Holding back the tears and trying to be peppy and smile, and not let on the disbelief, of what I saw the cancer had done to Annie, sitting there in her wheelchair still smiling. Thanking me in the car ride home for coming out. A big shock that night at dinner too; Annie forgot who I was. I was sitting next to her, and she looked up at Melissa and asked, Is this one of your friends, Melissa? Cause she keeps watching me eat, and I don’t know her. Thank God, Melissa got through to Annie that it was me.” (Melissa is Annie’s and my daughter.)
To me, that was the child in Annie coming out again. It was like she had regressed back to a child, and Melissa was able to snap her out of it. It seemed at times, Annie just wanted to get out of the cancer world, and away from all the pain and suffering. I think in some sort of way, it was a gift she acquired from her spiritual journey. I really don’t know how else to explain her ability to change personalities so rapidly. I called her “Little Annie” during her episodes of breaking away from her sad reality.
Another thing Leslie wrote, that was clearly a gift to me, from Annie. Leslie, Annie, and I were at the infusion center getting her some platelets, and apparently as I was walking away, doing a silly little dance for Annie, she said that Annie leaned over to her and said, “I really love that man, Leslie, he is so good to me.”
And to that I say, “Life is about love and being loved, there is no exception.” We lived, we laughed, and we loved, eventually losing in love. And that is a heart breaking experience.
October 21, 2010: Leslie, Annie, and I had a lovely day today; but when late afternoon started rolling around, Annie wanted to go shopping. Leslie and I were against the idea, with her being at such a high risk of bleeding, but we put big smiles on our faces and took her out. She knew Leslie was leaving in two days, and this might be their last chance to go shopping together. (As I said earlier, Annie had critical low platelets, which do not keep one from feeling okay, but if she were to start bleeding internally, there would be no way of stopping it.)
We left our home around 4 P.M., arriving at Target in Derby about twenty minutes later. Once she got in there near the ladies clothing, she seemed to want one of everything for her and Leslie. Her child like personality that she’d been developing was in full force tonight. She was having a blast. We left Target and headed for Kohl’s, which was one of her favorite shops. She started getting carried away in there, too. I started playfully pushing the wheelchair almost under the clothes racks so she couldn’t see anything. It took her a while, but she caught on.
She said, “Bobby, how come you keep parking me under these clothes?”
“Just trying to have a bit of fun Annie.”
“Well, I don’t think it’s funny, I want to shop.” So she shopped, and shopped until her cart was full.
When we got to the checkout counter, Annie had one of those little scratch cards to get her percentage off. When she scratched her card, it came up 15 percent off. She said, “Oh, darn it. I was hoping for more.”
The attendant behind the counter, after she rang the items up, asked Annie for her scratch card, which turned out to be a very precious moment. The attendant said, “Darn it, I hit the wrong key and gave you 30 percent off.” Annie was so excited; and it was probably one of her most pleasant last memories. She was grinning from ear to ear. Annie, loved getting a discount.
The Bleeding Starts
I was standing behind Annie while she was checking out with the cashier, and at one point watched Leslie lean over, give Annie a hug, then wipe her mouth, while telling her she had some food on a tooth, and she just wanted to wipe it off.
When we got home, and Annie inside the house, I went to the car and retrieved all their goodies. Leslie was laying the clothes out all over the room, which for some reason, was making us all laugh. Annie would say, “Oh look, I can make two outfits out of this set.” “This goes with this, and that goes with that.” She was having a blast.
A short time later as the excitement started waning, Annie sat down beside me and thanked me for taking them shopping, while smiling. That’s when I saw the blood all over her top teeth. She was bleeding! I didn’t panic, as in my mind I’d trained for this day for a long time, and knew what to do. I got up calmly, walked over to the kitchen counter, retrieved the pre-positioned flashlight and checked her upper gums. They were seeping blood, which was running down her upper teeth. Then I checked under her tongue, which was okay. Under the top and bottom lips, there was a few blood blisters, about the size of small pencil erasers. I checked the inside of her cheeks, and they had a few dime size blood blisters on them. The last places to look, was the roof of her mouth, and back of her throat. There was nothing on the roof of her mouth, but there were a couple of dime-sized sores on the back of her throat, and I could see the blood running down her throat from where food had opened them up on its way down. The visual of her mouth literally sucked the life out of me, but I couldn’t let her know that.
I simply said to her in a soft voice, “Annie, you are starting to bleed, and I need to take you to the hospital.”
She said, “No! I don’t want to go.”
She started getting very anxious and again in a soft voice, I told her to stop worrying.
“Annie this is not the bleeding Dr. Moore Sr. talks about.” This in itself isn’t an emergency, but you do need to be further evaluated for the possibility of a transfusion.
Once again, her reply was, “I’m not going to go to the hospital.”
I was upset, as I wanted her evaluated, but I said okay, knowing that a multitude of things had to be going on in her mind at the moment, and although I didn’t agree, I would honor her wishes. Lesley tried a couple of times to get her to go to the hospital too, but she refused.
At that point there was nothing else I could do, so I went to the market to get some food for dinner.
I hadn’t been gone five minutes when my cell phone rang. Leslie called and asked me to come back home, as Annie had apparently had a change of heart and wanted to go to the hospital.
I told Leslie I’d go ahead and get the food, and to tell Annie I’d be home in a few minutes, and place a call to the on-duty oncologist for guidance on the bleeding. Annie was okay with that, however, I knew what he was going to say. As soon as I got home, I made the call, and about twenty minutes or so later, Dr. Reddy called me back.
(The following conversation between me and Dr. Reddy was softly spoken.)
“I understand your wife is bleeding.”
She’s not actually bleeding now, but the blood blisters are there and she was bleeding.”
He replied, “we have to try to get her some platelets.”
I told him platelets don’t work for her.
He said “it doesn’t matter, we have to try.”
I asked him if it would be appropriate for me to call the paramedics, as I didn’t want her sitting in the emergency room.
He said, “I understand. It would be appropriate to call emergency services.”
I placed the call and EMS arrived shortly thereafter, took Annie’s vital signs, and transported her to the hospital.
Leslie and I followed them to the hospital in my vehicle. Leslie told me something on the way to the hospital that I didn’t know. She said Annie had some blood flowing from one of her nostrils, and out of one of her ears after I left to go get the food.
No wonder Annie changed her mind. That can quickly become a serious event, but regardless, hoping against all hope, I wanted her to try some more platelets. I already knew, if she started bleeding internally, it couldn’t be stopped by anyone; but depending on the severity of the bleeding, new platelets, if they worked, might stop it.
This beautiful day we were having has now turned out to be very long and traumatic. At this moment, Annie’s survival was certainly in question, as normally, when one starts to bleed, such as Annie, the end is very near.
When we arrived at the hospital it was around 9:00 P.M., and Annie was taken straight back to one of the rooms. Within minutes there was much activity in Annie’s room. She received an IV placement, and was immediately hooked up to 1,000 cc of fluid. They drew her blood to have it typed, crossed and matched, and then ordered her platelets. Prior to the transfusion, the blood count showed her platelets were 1,000; and only yesterday her platelets had moved up to 7,000. That speaks volumes to the situation we were in, and it appeared her isoantibodies were destroying all our hopes and dreams. There was nothing anyone could do, but keep trying.
After Annie received her platelets, the decision was made to put her in the ICU for observation, due to her high risk of bleeding. Apparently, the platelets she received didn’t work. I didn’t bother to get the actual number, just the words, they’re still very critically low, is all I needed to hear.
Annie going to the ICU was just a formality, but gave me some comfort in that, if she started a major bleed out, it would be handled by the medical professionals and the environment would be controlled. If it happened away from medical professionals, all I would be able to do is hold her and love her through to the end. I was living with that thought every day, and knew that when a patient has a bleed out (medical term), the blood can come from all crevices of their body, and projectile vomiting of blood is not all that uncommon.
Leslie and I stayed up most of the night while in the ICU watching over and loving on Annie. Eventually, Lesley curled up in a recliner near Annie’s bed and took a nap. I sat in a chair near her bedside, placed a hand on her leg so I’d be disturbed if she moved, and then laid my head on my arm and had a short nap.
October 22, 2010: This morning around 9:00 A.M, things started to move rather fast. Melissa showed up just after 9:00 A.M. She wasn’t with us last night as I didn’t call her. I knew this could be the beginning of the end, but I didn’t think it was time to get everyone worried.
During the night, I had been watching her ostomy bag for any signs of internal bleeding and didn’t see any. Leslie and I did the bedpan, so we were watching the urine as well; it was still clear. When the time came it would most likely be internal bleeding, and we would see the blood in the urine or bag; however, the other possibility would be a brain hemorrhage, which we wouldn’t know about until it happened.
Around 11:00 A.M., Dr. Dang was in consultation with other doctors about Annie’s condition. Apparently, all were in agreement that she was in end-stage multiple myeloma and the family needed to proceed with hospice.
Not long after their meeting, I was called over to Dr. Dang’s desk, still in the ICU. She broke down their strategy to me, and I think mentally my mind just froze. I told her to give me a few minutes to make a decision, while I took a walk and thought about it.
I walked over to Annie’s room and told Melissa not to let anyone touch her until I got back. As I walked and got more oxygen to my brain, the picture of what Dr. Dang wanted to do was becoming clear. She wanted to put her on the tenth floor for comfort are. Please don’t get me wrong, I believe Dr. Dang was correct in her thoughts, but I was not going to let her die in the hospital. I knew Annie was going to pass soon, but the bleeding had stopped. So I made a calculated decision, that Annie wouldn’t be going up to the tenth floor under any circumstances. I’d agree to hospice at my home, as long as Annie was not told by anyone. I’d tell her when I felt the time was right.
When I got back in the area, I walked over to Dr. Dang’s desk. She was staring at me as I walked towards her, and told her of my decision and plan; but as before, in Feb 2010, she didn’t agree.
“Annie is not going to wake up. She needs hospice now!”
“She will wake up.” I turned and started walking over to Annie’s room with Dr. Dang following me.
When we walked in, Melissa was lying on the bed next to her momma, cleaning the blood off her teeth with a soft rubber sponge. It scared Annie, seeing me and the doctor together. Annie asked me very softly, “Is everything okay.”
I was looking Dr. Dang straight in the eyes, when I replied to Annie that “Everything was just fine, and we’d be leaving here for home in a couple of hours.”
Dr. Dang replied, by saying that she’d go ahead and get the discharge papers in order.
I knew she’d be calling hospice as well, so I went back over to her desk and asked her to have a hospice representative at my home around 5:00 P.M.
Sometimes you have to negotiate with hospital personnel, in a way that lets them know that they are doing what’s best for the family. Dr. Dang was doing the right thing and our only dispute was where the hospice would be. We resolved that issue together. Yes, we’d be getting hospice, but it would now be in our home on my terms, which is what I wanted. I’d be the one to tell Annie about hospice when the time was right.
While in the hallway I bumped into a nurse I knew and she wanted to know how Annie was doing. When I told her she was going on hospice, she looked at me and said, “Oh no!”
It was then that I realized most people don’t know in layman’s terms what hospice really is. In the state of Kansas, I knew hospice nurses would not be allowed to administer any life sustaining fluids, to include blood, or platelets. However, she was allowed all medications taken orally. Some people actually get better while on hospice and are taken off. So the word hospice didn’t scare me, as I had control over Annie’s care. If I had let her go to the tenth floor of the hospital for hospice, sometimes they are actually talking about comfort care. Comfort care is supposed to be the later stages of hospice, when all indications are that the patient is clearly on their way out. Hospice then steps in and starts giving the patient morphine and other medications to help them stay calm and pass peacefully. The person in charge, whoever it is, makes the final decision on when to start comfort care. That would be made by me or Annie based on competent authority and the situation at the time.
In Annie’s case, it would be me; so I thought!
I went over and gave Annie a hug, and told her I was going to have Dr. Dang set up an appointment with the paramedics to take her home, and that they should be here around 2:00 P.M. Dr. Dang already knew that, but I wanted to make sure everything was running smoothly.
A short time later, when Leslie was sitting with Annie, Melissa and I were in the hallway outside Annie’s room. I asked Melissa how she woke her mom.
She said she laid beside her momma, started cleaning her teeth, and her eyes popped open. She told me Annie’s first words were, in a very excited voice, “I’ve done it again!” Meaning, she survived another event. She then asked Melissa, “Do they know what’s wrong with me?”
Melissa told her “No,” but they kept you in the ICU overnight for observation.
Annie asked her if she was going home, and Melissa said yes, but didn’t know when. Melissa knew I would never let her mom stay in the hospital on hospice. Annie was really fearful of dying in the hospital. That was one of Annie’s mothers greatest fears too, but in her case it happened. I basically swore an oath that I would not let that happen to Annie. I was keeping my word under some very stressful circumstances.
The paramedics arrived around 2:00 P.M. Annie was put on the gurney, strapped down, and we were on our way home. We were all very excited.
When we got home it was around 3:00 P.M., Annie was all smiles, happy to be home. Apparently, Melissa called one of her work mates at some point, and told them her momma was coming home to hospice.
What a night this turned out to be. Around 4:30 P.M., Michelle, one of Melissa’s work mates, arrived with several deli trays loaded with food. It looked like we were going to have a party. Shortly after she arrived, many of the girls got off work from Family Medicine East. They just started showing up and partied with Annie. She sat on her hospital bed loving it. That was probably as happy as I’d seen her over the thirty-month illness. Annie was truly graceful under such extraordinary circumstances, which in part helped make this an amazing evening, and allowed the newly found child in Annie to have one of her finest hours.
During the festive event, the hospice nurse showed up. I was informed by Melissa that I owed her “momma” an explanation. I cleared the living room of people, then went over and sat beside her on the bed.
She asked me “what was going on.”
I told her nothing was going on that she needed to worry about. I explained to her that I negotiated with Dr. Dang, who was in consultation with other doctors, that were all in agreement; you needed to be on hospice. So I agreed to hospice to get you home without a struggle or red tape.
I immediately saw the worry and disappointment come across her face; but as I gently squeezed her hand, and told her not to worry, she started relaxing again.
As we talked, the nurse was doing the forms, which I signed a little later. Annie was now officially on hospice. Not long after I signed the papers the nurse left and told us she would be back tomorrow to visit with us about the policies and procedures of hospice.
I told Annie, as things are at the moment you make your own decisions. I promised her this was a formality and no one was going to touch her. I did make her laugh, when I told her, “You can’t be sitting up partying one moment then put on comfort care the next.” She loved that, and seemed to relax even more.
Hospice Party Part 2, is end of life care talk with Annie and the nurse, to include a brown paper bag with the end of life care drugs, which I will tell you all about, to include how they work and their purpose. After reading part 2 you, will understand how the process works. You won’t be caught off guard, as was my case.
Everything I did while being Annie’s caregiver had an ultimate purpose in life that I was unaware of…To help others understand what would certainly be an unknown entity for them, and very frightening.
As a caregiver you’re the center of your loved ones wheel, you’re often their eyes and ears to the world. You’re going to make mistakes, and when you do, accept responsibility for your actions and move on. But don’t ever let anyone talk down to you. You deserve better than that—“You are a Caregiver.” Humanity in its finest hour!
We hear and talk about grief, but it’s usually intellectually savvy, always complicated, doesn’t make much sense, and often difficult to understand. So I’ve decided to describe grief as a metaphor, using terms I know from my experience, that will probably ring true with many. This is an example of how it was for me, and of course, my buddy, Mr. Grief.
Some folks that are grieving will read this article and probably comment, what a load of rubbish. Why? Simply put, everyone grieves differently, and some grieve much deeper than others. I’ll explain it this way. If my wife Annie had of been killed instantly in an auto accident, I would of grieved differently than this article will indicate. Because, that’s not what happened to Annie. She was diagnosed with cancer, and I was told privately she was very sick, and shouldn’t even be alive. Over the next 30 months I witnessed more pain and suffering than humanity should allow. No one should have to go through what she went through. And guess what. As her 24/7 caregiver I had a ringside seat. I got to see it all.
Two points! I believe grief can be driven by the circumstances surrounding the death, and the amount of love and empathy you had for the person you lost. I adored Annie, and having to watch her inhumane suffering for the better part of 30 months, really rocked my world–it screwed me up. So it follows that I had a long, deep, and difficult journey through grief. If you can relate to this article, you’ve been where I’ve been, and if you can’t–I would have rather been you, during grief.
Some people say, the only way we can truly reach the outer limits of our mind is to be hypnotized, or medically induced by drugs.
Obviously, they’ve never met Mr. Grief. He can take you to hell and back, and just when you think things are getting better, he gives you another round trip ticket and the cycle continues. He’ll pick you up, shake you to your core, toss you around like a rag doll and leave you in a corner to rot. And while you’re rotting, you’ll start to weep, and through your tears the words just start flowing from, your heart broken mind. How could this happen to us? All our aspirations, our hopes, our dreams, their just gone. This isn’t fair, we didn’t deserve this. And of course, Mr. Grief is right there with you, enjoying the moment, and discovering more new and innovative ways to mess with your head. He’s now entrenched inside your mind, and he’s going to take you on a real road trip. One of chaos, nightmares, the truths, the lies, and all the pain and suffering he can muster. And while he at it, he’s working overtime trying to deceive you into thinking that you are losing all your friends, because all you ever want to talk about is your loss. And who really cares about that, other than you. Mr. Grief gets great joy out of your loneliness and suffering. He has you all to himself now.
You’re getting tired, and you just want sleep. A place where you’re troubles will be behind you. Ah, but Mr. Grief loves the unconscious too. Their more fun to screw with than the alert ones, that are going about their business. You’re now trapped between two worlds, the conscious and the unconscious, and when the night mares or worse, night terrors hit, there is no escaping the reality of the vivid feeling that you’re reliving your worst nightmare over again. Your Loss! Mr. Grief will put maximum effort into getting you to relive all those horrible, traumatic memories and great satisfaction watching you collapse, in a pile of despair.
Mr. Grief loves this one! You’re asleep, dreaming, resting peacefully, spending some quality time with your dearly departed loved one. Life is so good, your hope is now renewed, nothing bad ever happened, and then you wake up. And Mr. Grief is sitting by the bed, waiting for you. He punches you in the gut and laughs in your face, and ridicules you for being so insanely naive. You ask, how could I have been dreaming, it seemed so real, the peace, the calm, she looked so beautiful. Mr. Grief wants you to have vivid dreams. And yes, he will allow some good dreams in too, but he’s always going to be there to greet you when you wake up. It was simply a cruel joke, he was screwing with your head. Now you’re heart is aching as the sorrow of your reality once again takes over, as you realize it was just a dream. He’s got you again!
Mr. Grief is relentless in his pursuit of your misery. He doesn’t want you to be happy. He thrives on your inability to think straight or make good decisions as he navigates the cobwebs of your mind, setting little traps along the way. And predictably, you’ll walk right into the trap and into his open arms, over and over. You’re really sick, but he is starting to love you—so he says.
As the days turn into weeks, and the weeks into months, you’ll say to others, “I’m really feeling good today, I think I’ve turned the corner on Mr. Grief.” Alas, what you’ve really done is turned your back on Mr. Grief, and being a real back stabber, he hates that. He knows where you live, you can’t escape that easy. Everywhere you go, he’s always there, with you, waiting for the right moment to pounce. Then it happens. Sitting at home relaxing, got the radio on, life’s good, until that old favorite song comes on and shatters your world once again. He controls what you listen too as well, knowing you are not smart enough to stay away from the sad music. After all, sad music always makes you cry.
And that’s, Mr. Grief’s fatal flaw. What hurts you, over time will make you stronger and in the end, help you heal. Yes, he will bloody your nose on occasion, knock you down, walk all over you if he can, make you think the sky is falling, break your heart, and do just about anything he can to you. But in the end, he really does love you, although he has a very strange way of showing it.
After all those horrible things he’s done to you, Mr. Grief has the nerve to say, I was only trying to help you. I’m your friend, you know me—I live in your mind–I’m a part of you. I didn’t mean to hurt you. I was only trying to help you face your worst nightmares head-on. How else can you get well. I wanted you to revisit your memories over and over, cry a million tears, get rid of all the negative emotions, and I made sure you did. After all, I couldn’t just sit inside your head and let you stuff all your feelings. It’s hard to be with someone that’s hurting sooooo much. I wanted you to be like you were, so alive, and well, so much fun to hang out with…My best friend.
I’m Mr. Grief, and I will crawl back into that part of your mind that you don’t want to access, but only after I’ve made sure all your pent up emotions are gone. I am your friend, let me help you, together we can do this. What’s that you say, “Things will never be the same again.” Of course not, they can never be the same, life as you knew it, will only live on in memory. I’m not totally going away though. I’ll linger around on the fringes, always be there as a subtle reminder of what you had. Lest you forget! I will no longer be your pain, but ever so often you’ll feel a little ache in your heart, and that will be me, Mr. Grief, just keeping an eye on you.
Mr. Grief will promise you that he won’t interfere in your life, once you reach the point, or a place in your life, and you’re trying to move on and get past–the past. Not forget the past, just get through it. Life will go on with or without you, and Mr. Grief is pulling for you.
Remember, he was your friend all along. Again! What hurts you, in time, will heal you and make you stronger. I know, he didn’t need to be so rough, but you’re a survivor, and survive you will.
The lead in picture to this article, I call the “Look of pain.” It was taken one year and one month after Annie passed. I drove out to a friend’s farm with my daughter Melissa. She apparently took this picture of me while I was walking across a horse pen. At that point, my grief was still poison and very intoxicating. I never really knew if I was coming or going and didn’t really care. I was simply living each day as they came, fighting for survival.
It’s now been four and one-half years since that fateful day, and I can tell you from my heart, there is life after death, and like it or not we survive, moving on to the next chapter in our life. Make it special!
I wish you all, the best.
It is my hope that when you read this article you will understand just how powerful the love of a loving caregiver can be. Saving a life under such complex circumstances, with the outside forces working against you is a daunting task at best. The article will discuss many of the things that went on with Annie and became the cause and effect leading up to hospice care.
For me, it’s simply time I had this conversation…It’s about love, the what if’s, understanding, education, and healing.
My inference is: In this story you will read about my wife Annie and hospice care. You will understand my conclusion reached, based on the evidence and reasoning.
My question to you the reader is, “What happens when they’re wrong.” How many patients/loved ones die each year from someone in authority basing their opinion on evidence and reasoning, allowing a precious life to be cut short. Yes it’s their best guess, but it’s not always factually true. You would be amazed at the amount of people that simply throw their hands up in the air in despair when told a loved one needs hospice, then simply let it happen. In their minds their powerless to do anything based on the information their receiving from the doctors or hospice nurse.
Often times, hospice care simply involves a patient, a nurse, and maybe a family member(s), with the nurse making the final decision on when to start administering the liquid morphine which over time will be fatal.
MVI, 2015 report on Accountability – People Development:
“Hospice employee evaluations are usually a joke. They often are “glowing” even though actual performance can be poor or substandard. I have found that usually 30-50% are behind their completion date. A better direction would be for continual evaluation and feedback. A stronger system would enable each person to self-evaluate his or her performance and judge it according to the standards. This leads us back to the absolute need for creation of standards.”
Is this the person you want to be making the decision on when it’s time for your loved one to be administered end-of-life-care in its truest form? Death!
Hospice has wonderfully cared for many people through the years, and gave them the dignity they deserved, and I’m not writing to disparage the good that they do. I’m just saying, sometimes they get it wrong, and when they do, who knows how long the person might have lived. Sometimes lack of training or understanding what is actually going on with the patient can lead to fatal mistakes by a hospice skilled employee on site, not held accountable by anyone. The decision will rest with the nurse. There will normally not be a supervisor on site.
I know from experience, every day is precious to many of those who are perceived to be facing certain death. But if they, the doctors or hospice get it wrong, but through evidence and reasoning you come to a different conclusion and get it right, the memories made after the perceived expiration date of the loved one, can and most likely will be amazing. If you do get a second chance with a loved one, even if only for a few months, make it an explosion of love, and showering of care.
Over the 8 weeks or so leading up to Christmas Day 2009, Annie had been experiencing diarrhea, constipation, and vomiting on a routine basis. We had seen several specialists during that time frame, and of course Annie had just about every gastrointestinal test or exam there was. Medical personnel were totally baffled. The general consensus seemed to be that she had a blockage somewhere, but none of the specialists could find it. CAT scans and x-rays were all negative.
Christmas Day 2009 was a very tough day for Annie. She did the best she could trying to share in the festivities, but it was obvious her condition was getting worse. As Annie’s caregiver, she looked to me for answers and to help her through some difficult times. Just after midnight I knew I had a decision to make. The doctors and specialists apparently didn’t see a need for hospitalization. As for me, I’d seen enough.
On December 26, 2009, at approximately 1:10 A.M. I called EMS. The paramedics and fire department personnel arrived around 1:30 A.M. Her oxygen saturation was in the middle 80’s, she was going in respiratory distress or failure. Annie was immediately put on oxygen and transported to Wesley Medical Center.
Once inside the emergency room, we were greeted by Dr. Liepens, who would be her attending physician.
In his admission notes, he states that “Annie is a cachectic, ill-looking, sixty-year-old female who is alert and orientated.” I mentioned this word earlier, but this time I will elaborate. Keyword is cachectic. It’s derived from the word cachexia, which means “a profound state of constitutional disorder, general ill health, and malnutrition.” The pictures shown on the Internet to match the word cachexia, are the pictures we’ve all seen of the POWs at the concentration camps during World War 2.
Melissa and I had been doing everything we could to get her the nutrients and calories she needed, but it seemed like she had a glass in her tummy. As soon as it filled up, it overflowed, and out it came. The doctors and specialists were clueless at this point, but as is sometimes the case, it falls back on the caregiver to take the necessary action to get some intervention going.
Annie was diagnosed with pneumonia in both lungs, caused by aspirated vomit that had entered her lungs. It was also noted that she was suffering from weight loss, to include persistent nausea, vomiting, and constipation.
She was given aggressive antibiotics for her pneumonia, and her stomach was pumped to remove any excessive fluid to relieve the vomiting. She was also placed on TPN, total parenteral nutrition, intravenously, to help her receive the needed nutrients.
Note: TPN for the most part will provide the necessary nutrients and vitamins to sustain the patient in the short term. It helps keep the patient stable. However, in cancer patients it doesn’t work all that well. Weight loss in advanced cases of cancer such as Annie’s is simply more complex than just adding calories and nutrients to a diet. In studies, it is said that many cancer patients started on TPN will usually die within 6 months. Reason being, cancer produces a multitude of chemicals that also lead to weight loss. That’s the roller coaster effect.
After several days she started recovering from the pneumonia, which had put her other problems on hold as her pneumonia was life threatening and assumed priority over everything else.
Over the next few weeks while in the hospital Annie had numerous CAT scans, and abdominal x-rays. The blockage simply would not reveal itself. They desperately needed to do exploratory surgery and try to find the blockage, but no surgeon would touch her due to her low platelets (Blood Clotting Mechanism). Their fear was, if they made an incision she would bleed to death right in front of them and they wouldn’t be able to save her. So everyone was taking the wait and see approach. Sometimes the problem will correct itself, but in my mind that was not going to happen. Too much time had passed.
During the latter part of January 2010, things were now getting bad, as Annie could still not keep any food down, and was getting weaker every day. My anxiety level was bouncing off the charts. I was so frustrated and desperately seeking answers to the vomiting. I mean it was really weird. As soon as she vomited the contents of her stomach out, she felt better, but was starving. She needed to eat, so they’d try her on something else. The results were always predictable, once the stomach filled, out it came…And the cycle continued on and on. The TPN will not help with ones hunger. Annie was literally starving to death.
On February 1st, 2010, a young surgeon, Dr. Nold, and his partner came into the room and simply said, they would be doing exploratory surgery on Annie in the morning. The risks were made very clear to me and Melissa, especially the potential for a catastrophic bleed, but as he put it, it’s now or never, we’re just about out of time.
Melissa asked him if her momma could die from the surgery. He said she could, “But not on my watch.” We appreciated his confidence, even though, we knew the risks.
We were anxious, but knew it was the right thing to do for Annie, as she was down near 80 pounds now, and would not survive much longer if the problem was not solved.
A different doctor came into the room that day and noted, that he warned the family of the dangers of the surgery, her chances of survival, but that Melissa and I, insisted on going forward. The doctors had been telling me for days she was slowly dying. However, Melissa and I were not going to let her die without giving her a fighting chance. I knew, if she didn’t bleed, they would most likely locate the problem and fix it.
On February 2nd, 2010, Annie had her surgery. When Dr. Nold came out to see us, he had a big smile on his face, and said she has some of the strongest platelets he’d ever seen. She only lost 10 cc of blood. He said her blockage was located about 1/2 inch above her colon, and had narrowed the opening down to the size of a pen head. That’s what was causing all her nausea and vomiting problems. He also had to remove eighteen inches of her small intestine that looked very suspicious to him. He thought she might have Lymphoma, another form of blood cancer. In the end, the intestines were being put to sleep from all the pain meds she was on, and slowly dying, making them look suspicious, and useless.
Annie now had an ostomy, created during the surgery and would now have an ostomy pouch for her body waste. In addition she had a G-tube inserted into her stomach which would allow for tube feeding.
FYI: If you’re dealing with a G-tube for tube feeding, Annie’s was 18 inches long, and protruded out of her left side. When it was not in use, like overnight, I would Tape it to the inside of her leg so she couldn’t pull it out while sleeping. That does happen, and sometimes requires surgery to replace it. And that’s not always possible with a person very weakened from surgery and other issues such as was Annie’s case.
After the surgery , Annie was getting weaker by the day. It got to the point where she couldn’t sit, stand, or even feed herself without help. (She was on a feeding tube, but one still needs an oral intake of 2,000 calories a day to show progress with weight gain.) She would not get that from tube feeding. She was now totally dependent on me, Melissa or a nurse. She was allowed to eat anything she wanted, but the surgery had weakened her body so much, she seemed to be giving up on life. Annie was tired from all the broken/diseased bones, serious/traumatic events, and the tough battles she’d fought over the past nineteen months. In addition she had developed three bed sores on her spine, exposing the bone, and one on her coccyx (tail bone). Bed sores are usually caused by being sedentary, and in Annie’s case was combined with malnutrition. They are also extremely painful.
We were now on a slow but steady course to the ultimate question. Hospice?
On February 11th, 2010, Annie apparently heard some bedside talk today about putting her on hospice. I must have been out of the room, as I wasn’t aware of that.
That afternoon while I was standing by her bedside looking down at her, our eyes locked onto each other and she abruptly started crying. We had a very sad, difficult, but gentle conversation.
She said to me very softly, “Bobby, please take me home. I don’t want to die in the hospital.”
Annie, I can’t take care of you at home. I don’t have all this equipment you need.
She replied in a very tearful voice “You can buy it at the shops.”
By that time we were both crying, and I didn’t know what to do; but I made her a promise, whatever it takes, I will get you out of here.
I knew I was going to meet with strong resistance; however, my love for Annie and honoring her wishes were driving my thought process at the moment.
I got in touch with our nurse and had her call the hospitalist doctor on duty, Dr. Dang, and tell her I needed to see her as soon as possible. I knew her well, and assumed her feelings were that Annie needed to be on hospice.
About two hours later, Dr. Dang arrived at the nurses’ station. I was contacted by Annie’s nurse and asked to come to the nurse’s station to visit with her. When I walked up to her, she was sitting at a desk watching me as I approached. I just looked at her and softly said, “Annie wants to go home.”
Dr. Dang told me she couldn’t go home, she was too sick.
So I asked the question; is she getting any better?
Dr. Dang closed her eyes, leaned her hear forward, and nodded her head no, while saying she’s losing more ground every day. “She needs hospice now!” (With a little slap of her hand on her desk.) They wanted to take her to the tenth floor at the hospital which is where they take patients for hospice care, while in the hospital. I wasn’t going to let Annie go up there, as that’s would be a one way trip for her. I desperately needed to come up with a plan quickly.
I simply said, Dr. Dang, if she is going to die, she can die at home. I asked her to get in touch with a local hospice and get them up here as soon as possible. I wanted to hear what kind of service they provided, and go from there.
I believe I was stalling for time and looking for direction. Inadvertently, I also did something very clever by telling Dr. Dang I was taking her home, and calling in another hospice company. Dr. Dang was now off the hook for responsibility of Annie once she left the hospital. No matter what went wrong, if anything did, I would accept full responsibility.
Approximately two hours later, two very pleasant ladies from Amedisys Hospice entered Annie’s room. We sat and visited for a while, and everything seemed okay, until we got to the comfort care part. (Keep in mind Annie was laying in her bed and listening to our conversation.)
I asked them what happened if Annie needed IV fluids, a blood transfusion, or platelets. I didn’t have a clue what their rules were.
They told me they can’t administer any life-sustaining fluids.
For me that was totally unacceptable as it took away any chance for the possibility of Annie turning this event around. The odds were, she was going to need IV fluids for hydration, and without them she would surely pass.
So that became the deal breaker for me! I had no intention of taking Annie home and just let her die without a fight. My gut instincts told me that if we had the perfect storm, so to speak, we could turn this ship around.
Can you see the dilemma I’m in? I would have gladly taken her home with hospice, but unfortunately hospice took all chances of survival away from her. Annie and I had already been through hell and back with this cancer, but I was seeing a window of opportunity here, no matter how small, and I had no intention of letting anyone take it away from Annie, or me.
Dr. Nold had fixed her intestine problem, and yes, she was very ill, frail, and weak; but getting her home in her familiar environment might help. Loved ones spirits are often lifted when they get away from the hospital environment, and often respond well. It was simply a roll of the dice.
After bumping heads for a few moments with the hospice nurses, I switched gears and asked them if there was any way they could help me get the equipment home that Annie desperately needed. To my surprise and delight, one of the ladies said they had a home health agency that would work with Annie and take all the necessary equipment to our home. But added, you are was making a big mistake. The lady then made a phone call, and arrangements were made for the company representative to meet me first thing in the morning so they could make an assessment of what Annie needed.
A few people didn’t agree with my decision, but I didn’t care. I didn’t base my decision on what other folks thought. I was supporting my wife, and if it turned out to be a disaster, so be it. Seriously, what was the worst that could happen? She’d die at home, surrounded by love; and this is what she would want. Beyond that, under the circumstances, “Love could not make a mistake, but it could create an opportunity.”
I, and many others, including some doctors/nurses felt that Annie might be receiving some sort of intervention with her care, that had helped us through some tough times. To this point, her journey through cancer had defied logic at times. Her situation was bad, and Annie appeared to be dying, but what did that mean. “It ain’t over until it’s over.” I guess!
This quickly became an ethical event with me. I had the Durable Power of Attorney to choose between life and death for Annie. And I choose “Life.” I can’t explain the feeling, but when I made that decision not to do hospice or put her on comfort care, I felt a strong burden was taken off my shoulders. At times during Annie’s illness, and there are some documented stories, where I made some strange decisions based on what I perceived was best for Annie, outside the realm of medical protocol, and we did just fine. Like many things in life, one has to speculate to accumulate, and in a strange way that pertains to extending one’s life too.
February 12, 2010: Total Home Care showed up this morning and after speaking to some of the medical staff, they were able to identified everything they needed. They gave me a phone number and asked me to call them tomorrow and give them an approximate time we would be home. They’d be waiting at our front door with the equipment.
Taking Annie home as frail as she was, and understanding things could quickly go very wrong, was a challenging thought for me. But I did everything I could do to keep the negative impulses away, and for now, focus on the fact that Annie would be going home tomorrow. We’d been in the hospital for fifty-one days, and while there: she had ten chest X-rays, twenty abdominal X-rays, ten CT scans, approximately seventy-five blood draws and countless other tests. It was time to go home.
February 13, 2010: The first thing we did this morning was check her weight. It was seventy-nine pounds. She had lost a considerable amount of weight over the past couple of months, despite all the effort that went into her care.
Annie couldn’t walk or stand, so I knew it would take me a couple of hours to sort the room, gather up all our belongings, and get the vehicle loaded. Once I got things organized, I called Total Home Health Care and told them they could expect us around 3:00 P.M., and that my daughter Melissa would was there waiting for them. A nurse helped me get her in the wheelchair, and wheeled her down to the car for me. It wasn’t all that difficult getting her in the car as she’d lost so much weight.
On our slow ride home, Annie was very quiet, and just sat and stared out the window of our car. We did have one very important conversation where I made her a promise that I would be relentless in her care-giving, but she had to agree to help me by fighting as hard as she could, as I knew, no matter what I did, if she didn’t have the will to live, she’d lose this battle.
How does one fight as hard as they can? In addition to tube feeding, for the first two to three weeks Annie was home I had to hand feed her. Fighting as hard as she could, meant eating whether she felt like it or not. But I fed her things she’d always enjoyed as snacks. Calorie loaded foods, like raspberries on top of Vanilla Ice Cream, deep fried pancakes with syrup and mandarin oranges on top. I had a goal, 2,000 plus calories a day, which included the tube feeding.
When we arrived home, as I got her out of the car and into the wheelchair, I could see she was trying to crack a smile, and I knew she was happy to be home. As promised, Melissa was there with the home health personnel and all the equipment. About an hour and a half later, after receiving my training on the equipment, they were gone, and Melissa and I had Annie all to ourselves.
As Melissa worked to make her momma comfortable in her bed, I went into the dining room, sat down, and tried to come to terms with what happen the past couple of days. It occurred to me that after our narrow escape from hospice and death, we now had nothing to lose and everything to gain. And there was no longer any doubt in my mind, that we would fight this continuing epic battle as a team, with all the grace and love we could muster.
Truth is, it was now becoming apparent that Annie’s struggle was nearing its end. I knew this, as each event was increasing in intensity, they were also draining her of her much needed strength.
After leaving the hospital Annie survived another 8 1/2 months. It was tough at times, but Annie and I enjoyed one of the best summers of our life. We loved and cherished every moment of our last summer together. Sometimes the stolen moments in life are the best.
Note: As I said, Annie had a Durable Power of Attorney that allowed me to make all decisions for her, on her behalf when she was considered not competent to do so. Imagine having the power to choose life or death for a loved one…Then imagine not having a Durable Power of Attorney, and the choice becomes the hospital’s. Annie wanted to die at home, which was one of her core wishes. My position as her loving husband and caregiver, was to honor her wishes to the fullest. The decision I made was only complicated because I made it that way by, understanding her core wishes, but not understanding what the underlying problem was. She was not begging for her life, she simply wanted to go home to die. The problem was, so many people were pushing her towards hospice, and skewing my ability to think properly. I heard the words “Let her go Bob, she’s suffered enough.” Easy for them to say, they had not loved or been loved by her for 38 years, built their world around her, and are not responsible for taking her life. As a caregiver, sometimes we have to cut through the cobwebs in our mind, think outside the box and figure out why things are the way they are. For example, why was she dying? All the doctor’s would say is she’s slowly dying and losing more ground every day. It was me that figure out she was dying of malnutrition, and that was reason. It was a simple process of elimination. In the end, I knew if I could get her home with the tools I needed, we were in with a chance. To me, malnutrition is not something one should have to die for, given the circumstances surrounding her illness that caused the lack of nutrition. Annie was weak, but her blockage was no longer a problem.
It’s so important for each of us to have a Durable Power of Attorney. However, make sure the person you are trusting your life with has your best interest in mind, clearly knows your core wishes, and you have reasonable expectations he/she will follow them. On the lighter side, if your friend stands to inherit a substantial amount of money when you’re gone, I would probably steer clear of making that person your POA. Just a thought!
The lead in picture of this article was taken 4 months after Annie came home. That day we were at the Wichita Intrust Bank Arena watching our grandson Andrew graduate from high school. It’s a large arena, over 14,000 seats. When I started pushing her into the seated area looking for a comfortable place for her, a lady walked up to Annie, me and the family and said, come with me, I have the perfect place for you and your family. She seated us in a beautiful, large VIP box. It was so cool. Annie was able to lean on some railing, shout and blow kisses at Andrew as he walked onto the stage. Precious Memories!!
That was a very long fifty-one day stay in the hospital, and very tough at times; but with Annie there never seemed to be a dull moment. There was always something going on.
Here’s one of those priceless moments that happened around January 21st, 2010. It was in the early afternoon, and I was sitting in my recliner reading the sports page while Annie was resting. It was not long before I heard the voice that only a husband can recognize. I knew I was in trouble, but had no idea why.
In her quiet stern little voice she said, “Bob, would you come over here for a moment.”
I said, yes dear, what do you need.
She asked, “Are you stupid.”
I just stared at her and said, “I don’t think so.”
“How much are we paying for this apartment.”
I tried to explain to her that this was not an apartment by telling her to look around at all the equipment and the IV’s in her arms. After pointing a few things out to her, I started recognizing the confusion in her eyes and changed my thought process. When she got confused, I’d learned over the course of the illness to go with the flow, as I didn’t want her to feel that way.
So I replied, probably two thousand dollars or more a day.
“Well then you must be stupid.” She asked me to walk over and look outside our eighth floor windows, and tell her what I see.
As I scanned the area, I wasn’t really paying attention, as after several weeks in the hospital, I knew what was out there, so I told her. “I see tall buildings, cars, and many people.”
Her reply was, “exactly.” For that kind of money, there should be a beach, or at least a swimming pool! (The actual amount as based on the bill was eight thousand a day. What would she have called me it she’d known that?)
I really couldn’t argue that point! So I decided to let her take charge, by asking her what she’d like for me to do?
She indicated that she wanted an apartment across the hallway. She told me that “she kept hearing people over there and they were having fun.” (That was the nurses’ station)
So I asked her if she wanted me to go to the office and get our apartment changed.
She was shaking her head up and down, meaning, yes I do.
She weighed about eighty-five pounds, could barely move, but she wanted to take charge of her life. I admired her for that.
I left, went to the nurse’s station, found her nurse, explained the situation to her and she started laughing. I said “it’s not funny, you’re not living with her.”
She said “okay, go back to the room and I’ll be down in a minute with her anxiety meds.”
I told her I wasn’t going anywhere until Annie had her medication, which seemed to make her laugh even more.
She then went to the closet, got the medication and went down and gave it to Annie.
As expected, when I went back to the room she was asleep. Thank heaven! I knew when she woke, she wouldn’t remember the conversation.
One morning around 3:00A.M., I woke to some noise, and as I looked over towards her bed, I saw her standing by the bed dusting a table. She had climbed over the bed rail, IV tubes and all.
I said “Annie! What are you doing?”
She replied, “I’m just having a little tidy up.”
I got up, stood by her, and in a couple of minutes when she was satisfied that the table with all the medical stuff on it was clean, I lowered the bed rail and helped her back into bed. It got a little crazy at times, and she definitely kept me on my toes. But, that’s the way it was. It was just a part of her tenacious will to live.
Always remember, strong narcotics can mess with a patients mind over a period of time. If you can, just go with the flow. It’s not about being right, it’s about caring for the patient or your loved one.
Only Love Can Break A Heart, Part 1, Part 2, & Part 3, deal with Annie’s death and walk you through hospice care conducted by Melissa and me. No outside intervention. You’ll see the power of love and what it means to a dying loved one, and who made the final decision to start the process.
In May of 2014 I was asked to be a guest speaker at the Mid American Chapter of the Leukemia and Lymphoma Society’s Man and Woman of The Year Awards, Wichita, Kansas. The event was held in the Marriott Grand Ballroom. There would be 540 distinguished guests that paid $125.00 a plate to be seated at a table. The event was to start at 5:00 P.M. I was told to be there at 2:00 P.M., and they would tell me how I could help. I was strictly a volunteer, willing to work the tables, serve wine, etc. No big deal. Then just a little before 3:00 P.M., Jenny came over and said, we’ve figured out what we want you to do. We want you to be our surprise guest speaker.
I said nooooo, I can’t do that. I’m not prepared!
She sort of ignored me, and said I would be coming up onto the stage as the last guest speaker of the night. The event would be 3 hours long.
I said, how do you expect me to talk to 540 people that have been drinking wine for 3 hours? Jenny knew I would do anything to help and support research and development of new cancer drugs, and chose to ignore my protests. Laughingly she said, you’ve only got two hours to come up with a plan.
Only living a couple miles away, I ran home and freaked out. I was totally lost, and in a bit of a mess. I desperately wanted to help, but knew when I went up onto the big stage, there would be little room for error.
As I nervously sat at my computer desk, searching my soul for answers, I glanced over to the corner of the desk and looked at an 8×10 picture of Annie taken two months to the day she was diagnosed with fatal cancer. It gave me an idea. I could stand in front of all those people, hold the 8×10 picture up and ask the question, “Do I look like I am dying.” At that point speak to them about how this picture was a cancer trap. You see, in the picture she looks beautiful and happy. Two months to the day later, we were told she only had 3 weeks to live. Quite a contrast and easy for me to passionately speak to. I also decided to write a letter to the audience from Annie, thanking them for their support of blood cancer.
As I stood at the bottom of the stairs to the stage, this well dressed lady walked upon the stage and started talking about this very special guest that was going to speak next–using some flowery words. Apparently I had a very important message. Talk about pressure. When I looked to my right Jenny was standing near me with a big smile on her face saying, “You got this, right.” I simply nodded my head yes.
When I held up Annie’s picture and started talking, all the noise and laughter quieted down. One could hear a pin drop in the room. I had the audiences attention, and as this was not my first guest speaking engagement I knew it was going to go well. I saw lots of tissues coming out, and instinctively felt that my emotions and the audiences were feeding off of each other. And of course, when I read them the letter that I wrote in what I perceived would be Annie’s words if she were here, the crowd really broke down. It took me 1/2 hour to write the letter. When you see the words color me red, the letter at the event was in red lettering as Annie died of a blood cancer.
My name is Annie, Color me Red. I would loved to have been there tonight in person, unfortunately multiple myeloma, an often deadly blood cancer had other plans for me. Please don’t worry about me, I’m doing fine, free of all the pain and suffering. And I promise, I will be there in spirit.
Recently I was awarded my Angel wings, and I now have the freedom to fly around the world. It’s such a beautiful place, one that we don’t often appreciate until we’re gone. Please take it from me, live your life, love, and be happy. Hug and kiss your loved ones as often as you can, that’s what I miss the most. Even with my mystical powers, I can’t do that. I reach out and I try, I see the curious look on their faces as if they know I’m there, but they just can’t feel me. And although it’s not the same, I am there, always there, watching and guiding you as best I can.
I love you all, each and every one of you. You are my family. And from the depth of my soul, I want to thank you for making a difference in the lives of others, especially the poor innocent children that can’t speak out, and can’t be heard. Please pay attention to them, be their voice. Help them! I visited a little girl the other day, she was fighting a blood cancer. She was very sad, and afraid. But I knew the truth, thanks to people like you that stepped up tonight and came to this gathering, she will be fine.
And that’s what this event is about, saving lives. Before I leave you, take a look at your glass, if you notice just a drop missing, that was me. You’ve just been kissed by Angel. I wish you all the best, and always, remember, if you love someone today, try to love them more tomorrow. Life Happens!
Needless to say the letter really touched their hearts. After I spoke, a signed author copy of Because of Annie was held up and received $2,100 in donations in Annie’s honor, and then sold separately to the highest bidder for $1,000. It was a good night and Annie raised a total $3,500 for cancer. I had a couple of personal items of Annie’s there too, that I donated for the charity auction.
Sometimes life is about discovery. And on this night, I discovered that if I reached down far enough into my soul for answers, it would be enough.
It wasn’t supposed to be this way. Annie and I were busy planning our future, and retirement. So full of promise, hope, and love. Then life played a dirty little trick on us. One day, out of the blue and with no warning, the phone rang in my office. It was Tracy, an oncology nurse from the cancer center. She told me Annie had three, maybe four weeks to live, depending on whether or not she could take chemo. She further stated that after going over Annie’s medical records for two days at the cancer center, they couldn’t even figure out why she was still alive. I was told I was a very fortunate man to still have her. It seemed she had a deadly blood cancer, multiple myeloma. My dreams, aspirations, retirement with my love, were now just an illusion. That kind of information is almost impossible for the mind to digest on such short notice. In an effort to make the words go away, the filters in my mind were on overload trying to filter out those dreaded words I’d just heard only moments earlier.
As difficult as it was hearing her diagnosis/prognosis and watching so many traumatic events as they unfolded, that was nothing compared to what was happening to me internally. I found myself locked up in a place where no one wants to be…fighting my anticipatory grief, while dealing with Annie’s.
There’s many ways to look at anticipatory grief, but I think the term Half Heaven, Half Heartache, would probably trump most of them. The term comes from an old Gene Pitney song from the early 1960’s.
In my case, anticipatory grief was apparent the minute I hung up the phone after my conversation with Tracy. She didn’t even give me any wiggle room. Annie was not going to survive the cancer, and it wouldn’t be a matter of if, but when.
It’s difficult, but one has to be very mindful when dealing with anticipatory grief over an impending loss. Annie was grieving too. It was imperative to me that I didn’t display my grief openly around her. The deep sorrow I felt over what was sure to come, had to be put on hold until I found the right place and time to release my emotions. To Annie, my grief could easily become a source of insecurity to her, and she didn’t need that. I allowed all my feelings to be quieted, out of love and respect for her and the terrible out of control battle that had to be going on inside of her.
My first strong release of emotions came flooding out two days shy of her second month with cancer. That morning when I woke her up to get her day started, she was blind. It happened so quickly, over night. And I guess her mortality really started staring me in the face that day, over the seriousness of this event. She went into a coma with no expectations either way. They would only say she was a very sick lady, but holding on. Later on in the day when my daughter Melissa came up to the cancer center to see her momma, I took the opportunity to dismiss myself and go downstairs and sit outside under a big oak tree and weep. I don’t know if my heart was breaking, but it sure felt like it. Even before this day she’d already been through hell. And being an eye witness 24/7 caregiver for the woman you adore, yes, I was grieving, having a pity party, feeling sorry for myself, and so hurt over the pain and suffering she was going through from her broken and badly diseased bones. It was just one month earlier that both her femurs were fractured, with the right one breaking off and taking part of the hip with it. On top of that, her spine collapsed during surgery to repair her broken femur and hip. And she’d already suffered four broken ribs. At this point in her illness, the second month, it was not clear to me what was going on inside of me. All I knew is that I was hurting and doing everything I could to keep my sorrowful feelings away from her.
As the months slowly slipped by, every day was like being on an emotional roller coaster. I never knew from one night to the next if this would be the last time I’d get to hug her and say, “I love you.” Every night when I laid down on the couch beside her hospital bed, I never knew if, when I woke up she’d still be with me. It was difficult falling to sleep at times. On those nights I’d simply lay on the couch, watch her breathe and find myself falling deeper in love with her. Some nights she would snore terribly bad. It was so loud, one would think it would be very disruptive. To me it was like sweet music to my ears. It actually helped me rest, knowing she was alive. I didn’t have to fight to keep my eyes open and keep checking on her. I knew, for that moment in time she was still breathing. Often times when she awoke the next morning I’d be laying on the sofa staring at her. Her eyes would come open and I could see them searching for me, and when I came into focus she’d say, “Hi Babes with a lovely smile,” and I’d return the greeting by answering, “Hi Sweetie.” And that’s how many of our days started.
In the summer of 2010 her cancer came roaring back. And on the day she was told, a timeless question unexpectedly popped out of Annie’s mouth. She looked straight into Dr. Moore Sr’s eyes and said, “How long do I have?” He shrugged his shoulders a bit and with a sigh and soft voice said, maybe five months, followed by, but I’m not God. Dr. Moore Sr. was fond of Annie, and I know he dreaded giving her that news, after watching her fight such an epic battle, which he described as probably the worst case of multiple myeloma he’d seen in his 39 years of practice as an oncologist. He knew, and by this time so did I, she would not be able to take treatment again. She was too weak, her body was too diseased and tired from all the pain and suffering she’d endured. He did try her on the smallest dose of chemo possible, but her body completely rejected it. Hope was now taken off the table barring some sort of miracle. Annie slowly started accepting her fate, and I had to do the same. There is no question, that when the cancer came back we knew what it meant. However, we did what we’d always done throughout the difficult times of her journey, we simply got on with our day. What else could we do?
From the summer of 2010 on, our love for each other was like glue. For the next five months we were stuck together at the hip. We loved each other with every breath, every word, every motion, and every kiss. We had discovered the “Perfect Love.” How special! But what a price we were paying.
The Reality of Anticipatory Grief
On October 26th, 2010, we paid a visit to Dr. Moore Sr. Annie’s blood counts were dangerously low and she was at a very high risk of bleeding to death. Dr Moore Sr. scheduled Annie for six trips to the infusion center over six days to receive platelets and blood. He was making his last stand for her. If the platelets didn’t work, we would simply be on our own. There would be no hospitalization as they couldn’t help her. She would now be past the limits of what modern medical technology can do. Hospice was out of the question too, as it wouldn’t work for her.
One evening during the six day time frame, I was sitting at the dining room table when I heard Annie shuffling to the bathroom. I just sat and stared at the bathroom door until she came out. As she walked out she was looking at me, her little lips were quivering as if she wanted to cry, when she said, “my urine is full of blood.” I walked over to her, put my arms around her and with a hug said, come on, let me put you back to bed. There was nothing I could say to her that would make it better, it was simply a helpless feeling. So I told her I would call the on-duty oncologist and see what he thinks. He told me what I already knew, she was now starting to bleed internally, and there was nothing they could do. He didn’t know what the cause was and simply told me to keep an eye on her. So I told her the partial truth…I was to keep an eye on the bleeding.
When Annie had surgery to remove part of her small intestine, she had an ostomy bag placed for her bodily waste. After the blood in Annie’s urine event, I started watching the bag closely for any bleeding. A day or two after the urine incident we were at the infusion center where she was getting blood products. While she was asleep in her chair, I made a routine check of her ostomy pouch to see if it needed emptying. When I saw the bag it was full of blood. It really caught me off guard, and for that instant sucked the life out of me. I must of gasped or something, because the two nurses came walking over, and when I showed them the bag, I could see the horror in their eyes as one of them said, oh no, oh no. The two nursed really cared for Annie. The sad reality was, when I took Annie to the bathroom to empty the bag, she was going to see all that blood. In the toilet it doesn’t take much blood to color the water, but that bag would be holding about eight ounces of blood. When she woke, we were through at the infusion center. I got her up and took her to the bathroom, not saying a word about the blood. She stood in the bathroom while I opened and released the blood in a container. I looked up at her and it appeared her eyes were empty as she stared at the blood. I was heartbroken for her, but once again, kept it to myself. For the first time since she’d been sick, I was lost for words. Even as I write this little story, I can’t think of anything I could of said to her that would have helped. She knew what it mean. She was clearly in, end times, and there was nothing I or anyone else could do, other then give her a loving hug. Words would sound hollow and be meaningless.
When a person is totally cognizant, as was the case with Annie, you can’t just put them to sleep. It’s not right. I loved her, didn’t want to lose her, so I fought for her. Even at the end, every moment is precious to our dying loved one. And I didn’t want to cheat her out of one moment of something that most of us take for granted. Life! So we fought until the end. Annie died a few days later, comfortable in her hospital bed, surrounded by love. Her pain and suffering was now over.
The lead in picture to this story is a prime example of half heaven, half heartache. It truly was heavenly having Annie around so long after science said she should not be alive, and always telling me this is it, only to be able to steal another day, than another. The half heartache, was the other side of the story. My heart ached every day. However, when half heaven and half heartache were mixed together, it wasn’t so bad. It was simply a balancing act. We both learned the true meaning of love, and how to make the most out of every day, even under such extraordinary circumstances. It was also about discovery…How much did I love Annie? Was I willing to care for her in a meaningful way for as long as it takes, facing challenges never known to me with total selflessness? And of course, I learned that it’s the little things in life that became the most important to us.
The picture was taken seven months before she passed, and approximately one month after a fifty-one day stay in the hospital for pneumonia, a bowel obstruction that required major surgery to remove eighteen inches of her small intestine, and other related blood problems, including weight loss down to 79 pounds. At this point she’d been in remission for fourteen months, but as you can tell by the picture, Annie’s remission after her body was ravaged by the cancer, high dose chemo, continued pain from many diseased bones, and one infection after another, was a very informal reminder that no two remissions are the same and Annie was not going to survive this disease.
Even today, four years post Annie’s death, I look at this picture of her preciously laying in her hospital bed, always fighting against the odds, trying so hard to make it just one more day, knowing the end was always lurking just around the corner. I so much admired her courage and strong will to live. It was the little things she said to me that really hurt the most and brought out the reality of my loss that was sure to come. One of the things was–“Bobby, if you meet someone when I’m gone, make sure she has a kind heart and loves you.” She said that earlier on in the cancer too when she was in the middle of a raging storm, but back then I was living on hope and could tell her things are going to be okay Annie, we’re going to get through this event, while not acknowledging her statement. I could no longer do that…Things were not going to be okay!
Note: Platelets are our blood clotting mechanism. Normal platelets in a person are 140,000 to 450,000. From the late summer of 2010 Annie’s platelets were 0 to 3 thousand. So when she started bleeding internally, there was no way to stop the bleeding as the blood wouldn’t clot. Surgery was out of the question. With low platelets, as soon as an incision was made the person would bleed to death. Annie had a rare disorder that recognized newly transfused plates as foreign and destroyed them, and with her cancer being back full force, it was killing the few good platelets she already had. Without being able to take life sustaining platelets, she was going to bleed, and eventually die. Annie had a rare form of cancer, multiple myeloma, and she passed from the rarest form of death with that cancer, low platelets. Folks don’t usually die of low platelets, as transfused platelets are normally life sustaining.
Because of Annie
When you look at Annie’s hospital bed, what do you see? I see colorful pillows, a colorful hot air balloon-fleece tied blanket-hand made by Annie, a colorful sheet, beauty, but most of all I see love, and feel a deep sadness and loneliness over the loss of my beautiful wife Annie. Many memories were made in that bed. Annie’s bones were very badly diseased from the cancer, and she was always hurting. Over the 29 month period she was in the bed, there were many nights when I’d give her a treat. First thing I’d do is prop her up on the side of the bed using her pillows to support her back and let her legs dangle over the side. We had a very large stainless steel bowl that I’d fill with warm water and Dove Moisturizing Soap, then place her feet in there for a warm soak. When I took her feet out I’d dry them off with a soft towel, then place her back on the bed. From that point on I’d cut (if needed) and clean her toe nails. Then I’d use Nivea Cream to give her a nice foot massage, leg message, her backside, her chest, her neck and face. She got the works…And she loved it. It was “sooooo” relaxing for her. I’ve said this before, it’s really the little things we do as caregivers that make a terminally ill patients life more bearable. Think of it this way. My wife was disabled, laying in a hospital bed, and didn’t have much to look forward too. So anything I could do, if only for that moment in time, to make her life a little better, I did it. My daughter Melissa did those things for her momma too. You know what, it would be easy to give up when you know you’re are fighting a losing battle, so we tried to keep her mind happily occupied as much as we could.
Annie at Victory In The Valley donating blankets for cancer patients.
Most nights we had an evening ritual. At 10:30 P.M. she liked watching the David Letterman show. So I’d sit beside her bed in the wheelchair and watch it with her. Usually over a bowl of Brier’s Vanilla Ice Cream with Raspberries on top. And during the hour he was on, Beverly would usually call and say a prayer with Annie. Well, after a short chat with Beverly and a comforting prayer, Annie would normally go night, nights. But the deal was, if she fell asleep, I was to wake her up for the show coming on after Dave’s, which was The Craig Ferguson show. She and I loved that crazy Scottish man. He made us laugh so much, for a fleeting moment we both lost sight of the world of cancer. Of course, Annie being English she really understood his sick sense of humor. You see, no matter how bad things are for a person, sometimes we can make their day or evening just a little bit better through selfless deeds. And I think as caregivers that, should always be a goal we set for ourselves. Making a positive difference in the lives of others is so important for the advancement of humanity.
Annie at Victory In The Valley donating blankets for cancer patients.
Sometimes love is a story within a story and a small portion of the love can be hidden in the details. For example, the fleece blanket. There was a time during the last 8 months of Annie’s illness that she wanted to make tied fleece blankets for the children and adults of cancer, that in her words were less fortunate than her. I could never reconcile that statement as I couldn’t figure out how anyone could be less fortunate than her. She was dying. Regardless, over that period of time she sat on her hospital bed and made around sixty fleece blankets. Each and every one had to be of a uniquely different designed pattern. She gave a few of them to nurses, friends, family, but donated most of them to cancer. Her focus was mainly on the “Children of Cancer.” I still remember the day when she came up with what I thought was a crazy idea. She asked me if I would go pick up 2 1/2 meters of a manly fleece fabric. So I did, and to my surprise she made a blanket just over 7 feet long, to be donated for a big man. How sweet was that. She really didn’t leave anyone out. The last blanket she made was adult sized, had a solid red background, with beautiful white hearts on it. That was one of my favorites. One day, one of her favorite nurses came over. She was a young speech therapy nurse. She remarked on how beautiful it was, and Annie told her she could have it. She picked that blanket up, tucked it under her arms close to her chest, and held it while rocking from side to side as if showing affection and love. And that’s what Annie was about–affection and love for others.
The Hospital Bed
Eight months after Annie passed away, the hospital bed was still sitting in our living room and I was still sleeping on the couch beside it. I was a griever, and the thought of putting the bed in the garage didn’t work for me.
Probably in the eighth or ninth month I received a phone call from my daughter Melissa. She was at work at Family Medicine East. Knowing that I was very sensitive about anything to do with moving the bed, she started tippy toeing around a conversation about the bed. Here’s why! The hospital bed was more than just a symbol of where she spent much of the last 29 months of her life, it was a symbol of “Love.” It’s where she lived and where she ultimately died. The last time I held her in my arms, I was sitting up near the head of the bed, cradling her after she passed away. When I laid her back down on the bed, I just wanted her back. And perhaps that bed was a symbol of a piece of her that I just didn’t want to let go of. Death for us mortals here on earth, is so final.
Melissa gently told me a story. A young 16 year old boy had been in a serious motorcycle accident receiving serious injuries, to include broken legs and an arm. He and his parents were patients at the clinic, so Melissa knew them. Apparently Melissa heard that their insurance company would not approve a hospital bed for the boy and they were pulling out all stops trying to get him one. So she called me, told me the story, and I just cried. Tears of Joy. I now knew where the bed needed to be. And I know that is exactly how Annie would have wanted it. Perfect!
Melissa called the family, told them where I lived, and a couple of days later the dad came over with a couple of his young sons to load the bed. I was really relieved. And I got to tell the child’s father that his son was going to be in a very special bed, one that was always full of love.
Precious Love: You were my love, my life, my hopes, my dreams, my everything–and now you are gone. “And Life Happens.” As bad as losing a loved one may be, we still have our memories–our beautiful bitter sweet memories. No one can take them away from us, and I will continue to share mine with others until my memory fades. And that’s what love is all about.
A Precious Moment
On this day, 20 October 2010, Annie’s life was precariously hanging in the balance. She was sitting on a fence and no one knew which way she was going to fall. Those life sustaining platelets (one’s blood clotting mechanism) were failing her again, as they always had. But now came the dreaded complications. She was starting to have a slow bleed internally that could not be stopped without more platelets. . With her body recognizing her transfused platelets as being foreign, her white blood cells–her soldier’s that kill infections and germs, were killing all the vitally important life sustaining platelets too. Annie was now on a slippery slope, and the transfusion she was having today had to work. The orders were, if her platelets don’t come up, she is to be hospitalized.
I knew Annie’s days were numbered over a month ago, but we were living on hope, we only wanted one more day, then once again we’d hope for another. It was a terrible place for Annie to be, but our only choice was to survive and make the best of each day as it came. What else could we do.
That day when the needle entered her arm and the platelets started flowing into her body, it became a heart pounding, sort of waiting game. Do you understand what hope is? Over the past two and one-half years she’d had many transfused platelets and the platelets had only ever worked once. She desperately needed this transfusion to work today and stop the bleeding. So here we were, once again living on hope. We never gave up hope.
After the transfused platelets were in her body, it was now truly all about the numbers. Normal platelets range from 150,000 to 450,000. Anything below 50,000 is considered critical low platelets, and mild bleeding can occur. When Annie enter the transfusion center her platelets were at 1,000, extremely critically low. It took one hour for the results to come back.
When the results came in, her platelets were up to 7,000, still very critically low, but they actually went up. I held Annie in my arms and while she was laughing I was full of tears. Her sister Lesley was here from California and we had a little celebration right there in the infusion center with the happy nurses. It was an amazing moment. We were still, laughing, loving, and living on hope…This picture of Annie and me was taken when we were leaving the infusion center, while I was helping her out of her wheelchair into the car. Look at the joy on her face. So precious.
Note: Complications from low platelets can and do cause death. However, what was going on with Annie was a very rare condition, and platelets normally work and are life sustaining for most people.
Did you catch part 1?
In part 2 you will witness Annie’s strong will to survive against overwhelming odds. And hopefully you will be inspired in knowing that no matter how difficult the circumstances, you should never give up. Life is precious, and “it’s not over until it’s over.” We were living on hope–that’s all we had left.
I said earlier in a article I wrote on her initial diagnosis, that from the second month of her illness she was known as their little miracle girl in the hospital and at the cancer center. Her diagnosis was 2 to 3 weeks to live, although I was told privately she should not even be alive. So here we are, 15 months later, and once again she finds herself in a battle for her very survival.
We waited for a good hour or maybe a little more. The first person that came to the waiting room was Dr. Dang. When I walked out into the hallway she told me that Annie was critically ill, and that Dr. Troung would be out in a few minutes to speak to us. I asked her if Annie was going to be okay, and she didn’t say a word. She simply put her two index fingers together pointing straight into the air. She was telling me in her own way that Annie’s chances were fifty-fifty. We had been there before, but never as traumatic as this. It was obvious, that Annie was going to need all the help she could get with this event.
A little while later, Dr. Troung came out with a couple of small pictures he wanted to show me of the inside of her lungs, he took with some sort of scope. They were before and after pictures of the suctioning of the lungs. The before picture showed many of the tiny, thin-walled air sacs, called alveoli, which were all full of what looked to be pus. What they actually do is complicated, but it’s to do with the exchanging of gases. In the second picture they were beautifully pink and free of pus. I don’t know how many he cleared of pus, but he seemed pleased. It wouldn’t change her infection, but would help her breathe. He said the ventilator was now breathing for her, and she seemed to be comfortable. He then gave us permission to go back to her room.
When Melissa and I walked in the room, we weren’t ready for what we saw. Annie was lying in her bed unconscious and now on the ventilator. Her arms were down by her side, tied at the wrists to the bed rails, with some sort of soft cloth. We could see her chest rise and fall; it was apparent the ventilator was simply giving the doctors more time to try to resolve what had become a very complicated illness. They administered her IV Propofol, an anesthetic, to help her rest.
I knew there were a lot of issues surrounding the ventilator and diseases such as Annie’s. The ventilator is used to support a single failing organ, which in Annie’s case was her lungs.
When a person is terminally ill, it’s a difficult decision whether to ventilate the person or not. Reason being, the ventilator will not fix any of the problems related to the illness; and this is where the controversy comes in. If Annie’s illness didn’t start to turn around in a week or so, when would they shut the ventilator down? And who would make that decision?
This was my first experience with the ventilator, but I’d heard from other caregivers that it can be frightening experience, as sometimes one is left with more questions than answers. That seemed to be the case with Annie at the moment.
September 9, 2009: Dr. Tom Moore, infectious diseases, was consulted by Dr. Dang and came over today. In his physical examination notes he writes, “critically ill and acutely ill, frail older lady.”
Annie had been a very young looking, attractive woman when diagnosed at age 58. Fifteen months into her illness, the doctor’s notes just about said it all.
He spoke with me extensively about her history the past few weeks, to include where she had been, right down to the local area. He indicated she might have contacted a virus from the soil. He also stated, “Given the history of travel and the incubation period, I can’t completely exclude swine flu (H1N1 influenza A).”
He had Annie immediately started on Tamiflu, 75 milligrams twice a day, and ran many tests and cultures.
September 10, 2009: Dr. Tom Moore came back over today and examined Annie. He stated that “There was increased pulmonary vascularity suggestive of mild congestive heart failure.” Respiratory swabs were obtained, and he checked her for Legionella, which is Legionnaires’ disease. He wasn’t ruling anything out, and equated the event that was taking place in Annie’s lungs to an “Explosion.”
Annie had an X-ray later today, which showed she had an extensive bilateral pneumonia, with the greatest concentration in the upper left lobe, but with no abscess. That was terrible news. She had pneumonia in both lungs, and with her immunity being so compromised by the cancer, she was in a battle for her survival.
Later in the afternoon, Annie was feeling poorly and very agitated. Propofol wasn’t helping her rest or sleep. A contributing factor may have been the steroid she was on, which can, and often does promote sleeplessness.
She kept jerking her little skinny arms toward her as forcefully as she could. She was trying to get loose; and I was afraid she was going to hurt herself. I said “Hang on a minute Annie, I will loosen the restraints a bit so you can move your arms.” I guess I loosened them a little bit too much. I turned my head for a second or two and when I looked at her she had both hands on the ventilator tube trying to pull it out. I managed to get her hands away from the ventilator tube just as a nurse walked in. The nurse gave me a stern look, then helped me secure them back in place.
Some folks have been known to pull the ventilator tube out and injure themselves. There is a balloon-type device at the bottom of the ventilator tube holding it in place, and if pulled out before the balloon is deflated, it can cause injuries. Watching Annie fight so hard to free herself made me sad. I’d never given any thought to the consequences of releasing her hands; but I guess common sense would dictate that the patient was going to try to pull the ventilator tube out of their throat if given the chance.
September 11, 2009: Dr. Farhat came over this morning on a consultation request from Dr. Dang, to check on her possible congestive heart failure. His impression as written in his notes was, “Respiratory failure requiring ventilator with severe pneumonia and evidence of fluid overload.” Further, “Congestive heart failure (diastolic and systolic) with an ejection fraction decreased to 44 percent.” That was more bad news; moreover, her heart was getting weak and starting to struggle.
Dr. Farhat treated her for the fluid overload with Lasix, which worked well for Annie in the past, and with the reduced fluid volume, her heart wouldn’t continually be on overload. He also started her on low-dose Lisinopril, a medication which can be used alone or in combinations with other medications to treat heart failure. It would also decrease certain chemicals that tighten blood vessels, allowing the blood to flow more smoothly while helping the heart pump the blood more efficiently.
Dr. Troung came over around noon to check the ventilator to see if her breathing had improved or not. I was watching him as he bent over and just seemed to be staring at the machine. He raised his head up and called me over to the machine and in an elevated voice said, “Look, look, look!”
I looked, and all I saw was some sort of meter and a bunch of numbers.
He remarked in an excitable voice, “She is starting to breathe on her own.” Her stated that her lungs were breathing at about 15 percent of their capacity.
That was good news and meant something was happening inside her lungs, and hopefully she would gradually improve. Most likely, her pneumonia was starting to retreat. What a blessing and miracle that would be. Annie was literally knocking on death’s door a day ago.
Dr. Tom Moore came over this afternoon and was pleasantly surprised too. He ordered another X-ray, and indeed the pneumonia had retreated a little. The question was; “Would that continue?”
He said he was still looking for answers, and that the illness she was suffering from was almost totally associated with the lungs.
What was still bothering him was, “What was the underlying cause?”
He said there was such a rapid onset of pneumonia, there had to be something else going on.
September 12, 2009: Dr. Troung came over again this morning and checked on her breathing status. He was very pleased and said Annie was making remarkable progress. He said he’d get a call from the nurse later today on her status and start weaning her off the ventilator if she continued to improve.
Around 4:00 P.M., one of the nurses checked the ventilator and called Dr. Troun, giving him the status of her breathing. I’m not sure of the percentage, but the decision was made to start the weaning process. The nurse slowly started turning down the ventilator a little at a time over a two hour period and Annie seemed to be tolerating it well.
He received a call from the nurse again around 6:00 P.M., under pressure from me. The ventilator was turned down to the point it was almost off. Annie was essentially breathing by herself.
He indicated that he would come over after he completed his rounds and remove the ventilator if he could. When Dr. Troung arrived, he was pleased with the results, and took the ventilator out. He was very happy for us, and had a beautiful smile on his face.
I must admit, I did push a little to get the ventilator out for several reasons, of which most were probably not justified. Despite the propofol, Annie was hardly ever asleep. I told them on one occasion to give her more, as she was not resting and too aware of everything that was going on. It was obvious that it’s a very uncomfortable feeling having a ventilator tube stuck down your throat. The doctor said they couldn’t up the medication as it might put her to sleep for good, which was not an option. Being restrained in a bed is necessary, but must be a horrible feeling over five days.
The justifiable reason was quite simple; Dr. Troung told me he likes to work off a seven-day window. Sometimes when a patient is on a ventilator, and every case is different, the ventilator is eventually taken out and they can’t breathe on their own. They quickly panic, go into respiratory distress and some folks die. Obviously, the brain is part of the reason we breathe. Being on a ventilator too long can disrupt the signals that the brain sends. The results can quickly become an emergency. Of course, that’s not normally the case, but it does happen. So I was pushing to make sure she got off the ventilator within that window, especially as she was already starting to breathe over the ventilator.
When they took the ventilator tube out and untied her wrists, she was so happy, and tried desperately to talk. But, she was so hoarse, it was very difficult understanding an excited, rapid speaking hoarse lady. Her voice started coming back clear, the next day.
She still felt ill, and would be in the ICU for a few more days; but she had received a miracle and she knew it.
September 13, 2009: Dr. Tom Moore came in today, as did Dr. Farhart. They were both very pleased as her pneumonia was in retreat and her heart was getting stronger.
September 14th and 15th, 2009, turned out to be reasonably routine days. Annie was still receiving Iv antibiotics, along with her other medications; she still saw her doctors, and had some X-rays. They were making sure she was not in danger of any sort of relapse.
September 16, 2009: Annie was moved out of ICU to general population on Eight Tower, cancer ward. Annie was placed in a private room, in an effort to isolate her from as many germs as possible.
September 17, 2009: This morning Annie started putting the bug in my ear; she wanted to go home.
Dr. Tom Moore came over and spoke to us for a while. He was observing Annie, making an assessment on whether she could go home or not. He knew I would take good care of her, but that wasn’t the point. He needed to know that she was well enough to leave the hospital. In the end, he agreed!
He told us even though he never got a positive test result for swine flu, he was convinced, due to her very rapid deterioration, she probably had it. He couldn’t find any other reason, and swine flu doesn’t always test positive. He told Annie, even though she was in remission, with her compromised immunity, she could still catch any germ out there. So we needed to be careful, and keep her as germ free as possible.
September 17, 2009: Based on Dr. Tom Moore’s and Dr. Farhat’s recommendation, Annie was stable and could go home. Dr. Dang got the discharge papers together and we were “out of there” later that day.
Before I close out this chapter, I would like to mention a few items of interest.
When Annie entered the hospital, from that moment on her treatment was intense and ongoing throughout the day and night. We literally didn’t go more than twenty minutes or so without having a nurse or doctor in the room; hence the name Intensive Care. Her doctors and nurses were wonderful and played a critical role in helping Annie survive this event.
I certainly wasn’t sure she was going to get through this event, but when she did I wasn’t surprised. I had already witnessed Annie survive events that many in her condition wouldn’t have. She was always fighting the odds.
If we put this event in perspective, what were the odds of a multiple myeloma patient with little immunity surviving sepsis, double pneumonia, and most likely swine flu? According to Dr. Tom Moore, the odds of Annie surviving this event would be hard to calculate. His inference was, “a catastrophic event like this would prove to be very difficult for the healthiest of patients to survive.” I was beginning to see that her survivability of such bad situations baffled many people. I certainly didn’t have any answers, other than her tenacious will to live, brilliant doctors, and her faith.
When Melissa and I made Annie laugh, the ventilator made a loud honking sound that could be heard throughout the ward. If you knew Annie’s laugh, you’d understand the noise it made. Annie loved to laugh and when she started, it was usually from deep within and rapid. The nurses weren’t happy with her laughter and said we were stimulating her too much. I respected their thoughts, but didn’t agree. At this point in her journey, I knew that laughter was good medicine and good for her soul. Laughter helped make sense of the insane world we were living in.
One day Melissa walked in the room and said, “Mom, aren’t you ever going to die?” You keep putting us through this over and over again. That was Annie’s, Melissa’s and my sick sense of humor that we had shared for years.
Annie started hauling with laughter, the horn was going crazy, and we got in trouble.
The nurse came running in, giving us a piece of her mind. She had every right to do that; but It happened not long before Annie got off the ventilator, and things were looking good. I told Melissa she had better go home before we lost all our privileges. She was annoyed, but left. That’s just how we were as a family. We found laughter during some troubling times.
Dr. Troung was a very reserved individual, and very proper. After one visit to our room, you could always tell he loved coming in. We always made him laugh.
He once said to me, “Is your daughter here today?” Melissa really got him going, even during the bad times. We as a family never allowed Annie to get too down; we kept giving her reasons to fight. Annie was always so much fun and loveable, and even when she was too ill to laugh, she appreciated the fact that we didn’t act like she was dying all the time.
Dr. Troung was a very reserved individual, and very proper. After one visit to our room, you could always tell he loved coming in. We always made him laugh.
Yes, at times our stimulation of Annie aggravated the nurses. However, their exceptional care for her and our aggravating stimulating ways, with the help of exceptional doctors, and I believe a higher power, Annie survived a very serious event. As I said once before, she could’ve lain down and died, of that, I have no doubt. However, as long as she was willing to fight, her family were going to fight just as hard for her, and so was everyone in the medical field.
as long as she was willing to fight, her family were going to fight just as hard for her, and so was everyone in the medical field.
The Bible verse that Melissa was reading to her momma, Psalms 23, many of you’ve probably have heard before. Here’s two partial sentences from the verse. “The Lord is my shepherd I shall not want; and yea though I walk through the valley of the shadow of death I shall fear no evil.” That was a very powerful message for Annie. I was surprised that Melissa picked up the Bible and started reading to her momma, and chose that verse. It was as if Melissa saw this coming and already prepared herself for what she was going to do. I couldn’t even have found that verse in time to start reading it. I guess Melissa was doing her bit to help reassure her momma, just in case things went dreadfully wrong. Those were comforting words whether one believes them or not. This went on for several minutes and you can imagine the intensity in the room. I’m trying to comfort Annie who’s in obvious respiratory failure; and Melissa is loudly reading a bible verse to her, while Dr Troung and the nurses’ are just trying to make meaningful decisions as quickly as possible.
I’m going to close this chapter with one very precious moment; a moment that will stay with me until my memory fades.
On day four of being on the ventilator, Annie was moving her hands around motioning to me. I had to use all my mental capabilities to figure out what she needed. It went on for a few minutes, before I asked her if she wanted to write something.
She nodded her head yes.
I was getting ready to break the rules for the second time. I went to the nurses’ station and got her a piece of paper and pen. Remembering the last time I loosened her hands, this time I loosened them just enough so she could put pen to paper.
The first few words I couldn’t understand. She got frustrated, but hung in there. She then wrote, “Am I going to be ok?”
I reached down and put my hand on hers and said in a tender voice, “It looks like you’re going to be just fine, Annie.”
The next note she wrote I will keep forever. It simply said, “Bobby, I love you.”
In this short story, as Annie’s loving husband and caregiver, I got caught between the ebb and flow of two different worlds…Wanting to do the right thing, and learning to let go. In life there are consequences for everything we do. This two part story will take you on a journey where Annie is struggling to live her cancerous life to its fullest, while creating an event that will lead to an courageous battle for her very survival.
Annie raises a glass
August 10, 2009: Annie received a call today from her sister Lesley in California. While they were talking, Annie held the phone away from her mouth, and asked me if she could go to California for ten days.
I told her that with her immunity problems, it probably wouldn’t be a good idea. It upset Annie, as she wanted to go. She felt it could be the last time she’d ever be able to make the trip. Annie had three very distinct issues she was dealing with. She had limited mobility (wheelchair bound), was very frail, and her immunity to germs was very low.
Over the years of traveling to Los Angeles, Annie made many friends. There would be lots of hugs and direct contact with germs. Every fiber in my body told me the trip could easily end up in a disaster.
Leslie got me on the phone and told me that she and some friends were hiring a large hall and having a big surprise party in Annie’s honor. That made me even more apprehensive. However, as it was a surprise party, I wasn’t allowed to speak to Annie about my concerns, knowing the last thing she needed was being around bunch of people contagious with who knows what.
I stood my ground for a few days, but the pressure was building from our daughter Melissa, some close friends, and a couple of the doctors. They felt Annie had been living on the edge long enough, and deserved a short vacation. I was told I couldn’t protect her forever. Their thoughts were, when the cancer came back and knowing that it would, she wouldn’t survive again. I knew they were probably right, but I still disagreed.
Annie was currently enjoying a small window of stability, and no one knew just how long it would last.
August 14, 2009: This morning Annie and I were sitting at the dining room table having some breakfast.
Without much warning she started crying, saying “Please, let me go.”
I told her the risk of infection was just too great. I said, “Annie, I love you and don’t want to lose you.”
She countered by saying, “I know you love me, so be happy for me. This could be my last chance.”
Looking back, we all knew Annie had a death sentence, at least based on science, so really what was the worst that could happen from this trip. I suppose from her perspective it would simply speed up the process. Annie didn’t want to die, but she didn’t fear death. She was surrounded by it every day of her life. In her world, people were dying.
She manipulated me into saying okay. She promised me she wouldn’t let people get too close to her, which I knew wasn’t true. When Annie’s white count was down to one and she had almost no immunity, if someone got near her, she’d hold her little arms out for a hug. She never really understood the risks she was taking, or maybe in her own way, knew her survival was limited and just didn’t care. I could have gone with her, but knew if I was there I’d spend my whole time pushing people away from her and make her “special event” miserable. Annie was still not aware of the party.
Later on in the day I called her sister Leslie, and told her I was going to let Annie come out. I told her about my concerns and I got the same promise Annie made me. I didn’t believe her either. I guess in some way it made me feel better by at least discussing the issues.
Annie was on several different medications, to include different narcotics for pain. I had to make a detailed list with instructions and put it in her bag of pills. I knew Lesley would make sure Annie got her medication on time.
This was one of the toughest and most difficult decisions I’d made so far. I think what influenced me the most was reflecting back on all the difficulties Annie had with the cancer, and knowing it would be back. I had to stop being selfish and thinking of myself. She deserved a chance to have some fun and get out of this world of cancer she’d been living in. I knew the trip would be good for her, if she didn’t catch some sort of germ.
Annie usually flew with US Airways. It always flew out of Wichita, made a stop at Phoenix, and then onto Ontario, California where her sister met her.
I got in touch with US Airways and started working on the logistics of getting Annie there and back safely. I discussed my concerns in detail, and they assured me they would take good care of her.
August 20, 2009: Annie and I went to see Dr. Farhat today for an EKG. He wanted to make sure her heart was still functioning properly after the high-dose chemotherapy. Some of the effects from the chemotherapy don’t show up for quite awhile after the patient receives it. Her heart was functioning normally, with no signs of swelling. Her weight was 106.8 pounds; and from a cardiac standpoint she was doing reasonably well.
August 24, 2009: I took Annie to the airport and parked in front of the US Airways terminal. The baggage handler came over to the car to assist us. Annie knew him well, as she traveled often. I got her in the wheelchair and wheeled her inside, while the baggage hander brought the bags in. He gave me his word he’d stay with her until I got back from parking the car. When we checked in, I was given a pass so I could push her through security to her gate.
When we got to the gate, the US Airways agent came over and discussed her trip with me. She told me what their plans were, and reassured me that her trip would be smooth. I was still very anxious, but went with the flow, as I could see the excitement building in Annie’s eyes. We transferred her into one of their wheelchairs, and they took her to the plane before anyone else was allowed to board.
Annie at the party. Leslie is in the white top.
Leslie had contacted some of her friends, and had a beautiful hospital bed delivered and waiting for Annie at her home. Leslie also had a nice wheelchair with comfortable pillows waiting at the airport. In addition to all that, there was a new portable potty sitting near the hospital bed. Leslie loved her sister and it really showed in the effort she made a to insure Annie was comfortable while at her home.
Annie called me from her cell phone after the airline agents got her comfortable in her seat. She said she loved me and thanked me for letting her go visit her family and friends. At that moment Annie’s spirit was very elevated. I was still at the gate and not going to move until the plane was flying safely in the air. I was really sad and knew I’d be a nervous wreck while she was gone, and miss her terribly. I couldn’t wait for her to get back so I could get my hands on her, and she hadn’t even left yet. For the past fourteen months we were almost always together; this was going to be a long ten days.
Eventually the US Airways flight took off, filling my mind with so many emotions. I knew I needed to let her go, but at the moment it was very hard for me. One of the thoughts that troubled me was; “What if they had an in-flight emergency, or worse? Who would care for her?” It was starting to feel like my mind was playing head games with me. Eventually I turned my focus to the sky and watched her airplane until it disappeared from sight. Now all I could do was wait until I received the call telling me she was safe. Within five hours of departure, I received that long-awaited phone call from Annie. She said the flight was marvelous, and that US Airways flight attendants took great care of her. She seemed really happy, and I was happy for her. While she was in Los Angeles, I spoke to her every morning, for at least an hour.
It was now becoming obvious to me that I was addicted to Annie and our extraordinary way of life. I wasn’t just missing her, I had a craving for her soft touch, her smile and beautiful laughter.
August 31, 2009: I called Annie this morning as usual, and as soon as she started talking, I knew we were in trouble. She couldn’t say more than a couple of words without taking in more air.
“Annie, you’re getting sick.”
She replied in a soft voice, “I know it.”
Photos from Annie’s trip
My first concern was that she had a buildup of fluid in her lungs which would account for the sharp short bursts of taking in air, possible pneumonia, or fluid retention from possible congestive heart failure. I’d seen it many times before, and felt so helpless! Over the period of the illness, I became exceptionally good at seeing potential problems in their early stages and taking the appropriate action. This was my biggest fear, slapping me in the face.
I asked Annie to put Leslie on the phone. I told Leslie to have a close look at Annie’s legs, check for any swelling, and to take her temperature. While Lesley checked Annie out, I held the phone to my ear listening for any sounds or conversation between them, and as I did I could feel my heart pounding in my chest as I waited with anxious anticipation.
Leslie got back on the phone and said her legs looked okay, and her temperature was normal.
I gave Leslie the following instructions: check her temperature and legs for swelling every hour or so, and if her temperature starts to elevate or her legs swell, take her to the hospital emergency room immediately. Lesley was to tell them she has symptomatic multiple myeloma, and may be experiencing a fluid overload or have pneumonia.
The nearest hospital, Loma Linda, was very close to Lesley’s home. On this issue, I knew I could trust her. Lesley and I usually spoke daily over the phone, and she knew how quickly Annie condition could deteriorate when she gets ill.
Annie didn’t progress any further with her illness, but my suspicions were that she was ill, and it just hadn’t reared its ugly head yet.
September 2, 2009: Annie arrived home this afternoon and she seemed well, but I was still worried. The symptoms Annie had in California were typical of the way an illness starts when you have multiple myeloma. My instincts told me there was something else going on.
September 3rd, 2009: When we woke up this morning, Annie seemed okay. As I gave her morning medications to her, she told me how Leslie made her take her medications on time, every time. That pleased me, but I wasn’t surprised.
To be on the safe side, I contacted Melissa at Family Medicine East and set up an appointment for Annie to have a complete checkup tomorrow afternoon.
September 4, 2009: I took Annie over for her appointment at 2:00 PM. Her blood work was basically okay, with low platelets which was nothing new. She had a chest X-ray, which was within normal range for her, so we went home and decided to have a good weekend together.
Annie’s photo album
September 5, 2009: Today was a good day as we relaxed, and for the third time I got to listen to Annie’s stories again. She was so proud of herself for making that trip, and I was very proud of her too. She said she had a wonderful time and made lots of good memories. She told me around fifty to sixty people attended the surprise party in her honor. Annie said she didn’t know many of the people, but made many new friends and had many pictures taken with them. I loved the picture of her with short blonde hair, which was still growing after her treatment with high-dose chemotherapy. She was holding a glass of purple juice, saluting the camera. I loved the picture even more, after I told her it’s not a good idea to have a glass of wine when on morphine. That was one of the things I warned her and Leslie about when she went there.
Her reply was, “I didn’t have very much, and unless you have cancer with a death sentence, you’ll never understand.”
She was right! Physically, I usually had an accurate impression of how she was feeling, but mentally, I didn’t have a clue. Annie was on “death row,” but hadn’t done anything wrong.
September 6, 2009: This day started out as most, and she seemed to be feeling pretty good throughout the day. Melissa came over in the afternoon and we played around and made Annie laugh. Around 6:00 P.M. when Melissa checked Annie’s temperature, it had spiked to 102 degrees Fahrenheit. We both told her she needed to be transported to the hospital, and I was going to call 911. She begged me to give her something for the temperature and give it a little time. Annie could be a handful at times, but I respected her wishes, and gave her two Percocet tablets which contained 500 milligrams of Tylenol each. I told her I’d wait until 8:00 P.M. for a response, and not a minute longer.
At 8 P.M. her fever was gone, so I got her out of bed, wheeled her to the dining room table, and fixed her some macaroni and cheese. She seemed fine, so Melissa left for home. Around 10:00 PM, I helped her into the hospital bed, checked her over, all was still well. At 12:30 A.M., I gave her nighttime medications to her, checked her over thoroughly, and she still seemed okay.
When I laid down, it was around 2:00 A.M. My mind was focused on the two events that happened over the past week, of Annie feeling unwell. This time we added a high fever and I knew something was wrong, but for whatever reason, the underlying cause of the two events hadn’t revealed itself. I’d been through this sort of event several times; it always took some sort of intervention to get it under control. It never just faded away!
September 7, 2009: We got up this morning, did our usual routine of getting her washed, her medications, and breakfast. She had a snack for lunch, and laid down on her hospital bed around 2:00 P.M. for a nap. I did my usual chores, the dishes, cleaning, and sanitizing while she was resting.
Around 5:00 P.M., I walked over to her bed and put my hand on the back of her neck to make sure it wasn’t radiating heat, which I’d been doing throughout the afternoon. As soon as my hand got close to the back of her neck, I could feel the heat. I hustled to the medicine cabinet, grabbed the thermometer and took her temperature. It was 102.5 degrees, but the heat from the back of her neck was so intense I knew it would be getting higher. I ran next door, and luckily Sarah and Janet were home. They were both nurses with 70 years experience between them. They ran over to our house with a kit to check Annie’s oxygen saturation. Essentially, the oxygen saturation measures the level of concentrated oxygen in your blood. Annie was very low at 84 percent. Her breathing was labored and she was in obvious distress. Normal oxygen saturation for Annie was 95 to 96 percent on room air. When Sarah got the reading, she didn’t say anything to me, just simply showed me the number. I saw the number and said, “I’m moving,” meaning I was calling 911.
The fire department and paramedics arrived about fifteen minutes later. By that time her temperature was approaching 104 degrees. She was in respiratory distress, and I knew it. They took her vitals and noted that her fever was still around 104 degrees, and her oxygen saturation was unchanged. They put her on oxygen and transported her to Wesley Medical Center. When we arrived, they didn’t waste any time getting her in the hospital.
Once we got inside, and into a bed, they hooked her up to an IV for aggressive administration of fluids. Her temperature was 102.9 degrees, and her blood pressure was 120/76.
Dr. Womack was the attending physician at the emergency room. After they drew her blood and did all the things they needed to do, he probably made a decision that saved her life.
He walked over to me and said he’d be treating her with broad-spectrum antibiotics with Vancomycin and Zosyn for probable sepsis, which is blood poisoning.
When a person is in Annie’s condition, with her underlying immunity compromised gets sepsis, there can be as little as a three-hour turnaround period. Anything outside that window usually results in death. The vital organs are poisoned, and simply stop functioning. It can be a very painful death, and does happen, although rarely, with multiple myeloma patients.
By this time, my tears were flowing. I didn’t cry; they just ran down my face. I’d been so traumatized from all the pain and suffering I’d witnessed to this point in her journey and it was getting more and more difficult with each event. The only thing I had going for me at the moment, was the strong sense that Annie had a higher power on her side. I understood the desperate situation she was in and that she was going to need some help.
Annie’s chest X-ray came back positive to left upper lobe pneumonia. Once they saw the X-ray, Annie was immediately taken up to the Cardiac Intensive Care Unit and put in isolation. Annie was now relatively safe from getting germs or transferring germs to others. She was placed in a room, off of a smaller entry room. Being a military retiree, I called the entry room her first line of defense, which is essentially what it was, as the rooms were separated by glass sliding doors.
Annie was experiencing major breathing problems, and struggling to get enough air. She had two tubes, one in each nostril, pushing air into the passageway. About every thirty minutes they turned the volume up a bit, but it didn’t seem to help. I was starting to get anxious, as I’d been through some traumatic events, but seeing Annie struggling for air took things to a whole new level. Thankfully, Annie was sedated at the moment. When she knew the paramedics were coming she started getting anxious, so I gave her a Xanax to keep her calm. But, I suspected her anxiety was more due to her labored breathing than the paramedics.
September 8, 2009: In an effort to administer aggressive fluids, antibiotics and other medications a PICC line was installed this morning. Annie was approaching the maximum amount of oxygen she could receive from the wall-mounted device. I could feel panic creeping through me, as I knew if the lungs are not taking in the appropriate amount of air, over time the vital organs and tissue will be affected. There was urgency in her care; and they still didn’t know what was causing this event.
By the afternoon, it became apparent she had reached the maximum amount of oxygen the apparatus could provide. It stated in one of the progress reports, “even with the antibiotics and aggressive treatment, her condition was deteriorating rapidly.”
Dr. Troung, a pulmonologist, was called in to evaluate Annie. He realized quickly that Annie was in respiratory failure and needed immediate intervention. He decided to try her on the BiPAP, which is basically a mask, connected by tubing to a BiPAP ventilator. It delivers noninvasive positive pressure for impending respiratory failure. After several long-agonizing minutes, Annie’s rapid breathing was quickly turning into an emergency. Her breathing was so rapid it seemed as if she was exhaling and inhaling at the same time. I was standing beside her, with my eyes locked to hers, while she was sitting up on the bed struggling for air. I could see the fear in her eyes, questioning me, looking for some sort of reassurance, or telling her everything was going to be okay. All I could say was, “Hang in there, Annie.”
Melissa had the Bible out and was reading Psalms 23 to her momma. As soon as she read it, she’d say to her mom, “Do you want me to read it again?”
Annie would nod her head yes.
The situation was very intense, and Melissa kept reading until Dr. Troung recognized that the BiPAP was failing.
He walked over into the first line of defense room and motioned for us to come in. We quickly started walking his way and while in mid stride he looked at us and said, “We need to put your wife on the ventilator now, or she is going to code.”
I asked him if he needed our permission, and he said, “No.” Then I asked him if it would help her?
He replied that it will breathe for her, provide life-supporting care and maybe give us time to find out what’s going on. He said her illness is progressing very rapidly and we still don’t know what the underlying cause is.
Melissa told him her mom was a DNR, and he acknowledged her by saying, “If her heart stops beating, we will not resuscitate.” As he was moving back to Annie, he told Melissa and me to go to the waiting room.
Melissa and I went out into the hallway and just started hugging each other and crying. We were both very fearful, and knew life-supporting measures were a good thing, but the outlook for Annie was obviously in question or she wouldn’t be on the ventilator.
What we went through since Annie arrived at the hospital was very fluid, and intense. Melissa and I adored Annie, and watching her suffer as she had the past fourteen months, was starting to wear us down. The truth was, it was only going to get worse.
In part two, you will witness a courageous battle from a lady with a very strong will to live. And hear these words from Dr. Tom Moore, Annie’s oncologist’s son and future assistant director of the CDC. Bob, the odds of Annie surviving this event would be incalculable. Further, a healthy person would have trouble surviving what’s going on here. Dr Moore was Annie’s infectious disease control doctor. Brilliant man.
How my caregiving experience changed my relationship with my daughter
The purpose of this article is to help others understand, that when care giving for a loved one, in my case a spouse, even loving relationships with other family members can be strained and even severed at times. The caregiver is often walking a fine line trying to keep the peace in the family. We know from studies, some of the worst things that can happen to a cancer or terminally ill patient, can be caused by too much stress from anything, to include family members squabbling. As caregivers we have to be very mindful of that, and keep the stress level down.
This is my story with my daughter Melissa and the strain it placed on our relationship.
To understand my care giving experience with my daughter, one has to understand the story within the story. What created the resentment and why things were so emotionally charged at times.
Introduction to Melissa
I loved my daughter before I met her. When Annie was pregnant with Melissa, at the time we didn’t know if it was a boy or a girl. We had to wait and see what popped out.
In May of 1973 at Seaside Hospital in Crescent City California, Annie was in labor and I was cast aside along with Annie’s mum Joan, (who flew in from England), to the waiting area. Finally the moment came when we were told we could go to the door and look in, as the baby had arrived. As luck would have it the door only had one small window, and Joan and I were banging our heads together to get a little peak at the baby. All we could see was a blue blanket wrapped baby. When I got to the bed I just kept staring into Annie’s eyes until in her little elevated English voice she said, “Well look at her then!” I was so amazed at the gift she just gave me that, I suppose I forgot there was a baby. That was a beautiful night, and it was love at first sight. Melissa and I have been extremely close for 40 years now. And to this day I don’t know why they used a blue blanket for a girl.
When Melissa’s mom, and my wife Annie, was diagnosed with terminal cancer and given only a short time to live, things did change between Melissa and I. I was now a 24/7 caregiver, and in my mind Annie needed me, and my life became consumed with the world of cancer. However, it wasn’t that cut and dry. Melissa worked as a nurse for a clinic, and had worked for quite awhile in the hospital emergency room. She was quite knowledgeable of cancer and illnesses in general. And I was not.
In the beginning, the first five months, every time I encountered a problem and found a solution, Annie would insist I called Melissa for guidance. And many times Melissa and I bumped heads. I felt that I knew what was best for Annie, but Melissa sometimes felt I needed to do things differently, so Annie would override my decision. It started festering some resentment in me towards both Annie and Melissa. But I really didn’t let it show for quite some time. I adored Annie and Melissa, but being piggy in the middle was not working for me.
Here’s a fact! If you are a caregiver for a terminally ill patient and things go wrong, as they often do, you are held accountable by everyone, even though your advice may be coming from some other family member. Family members love throwing out advice and guidance, even though they might not, often see the loved one…In the end they often try to take credit for the good, while denying the bad. As a caregiver you carry the workload and the buck will always stops with you. If you take bad advice from others, it can come back and bite you.
If you are a caregiver for a terminally ill patient and things go wrong, as they often do, you are held accountable by everyone, even though your advice may be coming from some other family member
One day I walked into the dining room, it was around the fifth month of her illness, and Annie was sitting in her wheelchair at the dining room table. I walked in, looked at her, and started crying, asking her, “What do I need to do to become #1 in your life again.” I said, “look at me Annie, I’m standing right here in front of you, and you don’t even see me.” “Where is everybody else?”
“Bobby, I didn’t think you would want to care for me.”
“Look at me Bobby, I’m not the same person anymore.” Melissa is a nurse and I just thought it would be best to use her so I didn’t have to bother you so much.” Note: I still believe to this day, the appropriate words spoken by Annie should have been, I’m not sure I can count on you. This is coming from a lady that I loved from the day I met her.
That statement troubled me as Melissa worked eight hours a day and had a husband and four kids to care for. I was in the house with Annie 24/7 and doing everything for her. But she wasn’t seeing me, and when there was a problem she needed Melissa. So yes, I was now in a pity party mood, and a bit resentful of her and Melissa.
A little later on in this conversation she started crying too, and in a soft voice, she said to me, “I can go to my sister Lesley’s,” she can take care of me.
With my emotions flowing, I said, “Annie, what are you talking about?”
That’s when I got down on my knees in front of her wheelchair, still crying, told her how much I loved her, that I loved caring for her and was going to be her caregiver until my last breath if need be. She reached out to me and we hugged each other, with the tears flowing.
I said to her, what’s this about? You don’t think I’m going to be here for you, do you. She just stared at me with questioning eyes.
And that’s when I said, Annie, pay attention. I’m going to take you on a journey, and I’m going to show you what real love is all about. When you leave this earth, you will know you were loved. Annie knew I loved her, but didn’t think I loved her enough to give up everything for her, at this moment in time.
About a month or so later she turned her life over to me as the earthly being that she trusted more than anyone. And I never once let her down. I had now regained her trust.
Things really did change though. It got to the point that when Melissa was sitting with her while I made an appointment or whatever, Melissa would keep calling me and telling me mom was wondering when I was coming home or back to the hospital. She no longer felt safe without me in her presence. The only person she genuinely trusted was me, and in her mannerism she made that clear to everyone. I earned her trust by working hard caring for her and overpowering her with my love for her. When I pushed Annie in her wheelchair through the cancer center, or the hospital, I always saw the deep beauty in her, and was so very proud that she loved me. She was a source of pride and inspiration to me.
Cancer Will Destroy A Family
Cancer is an evil illness and will disrupt and bring a family down if allowed too. What I was beginning to learn from cancer is that it was quite natural for Annie to want Melissa’s opinion on things as she was trained in many aspects of care and medicine. Therefore, my resentment towards Melissa was probably a bit misguided, but I couldn’t help how I was starting to feel. As Annie’s caregiver, I did resent taking directions from Melissa at times. I felt that I knew what Annie needed and I didn’t need or want any advice. As for Annie, having a terminal illness with no hope of survival, I couldn’t possibly understand what she was feeling, thinking, or why she felt the way she did…Not wanting me to care for her, or not trusting that I would always be there for her. Just imagine, she was a fifty-eight year old young looking, very attractive and independent woman six months ago, and now has two broken femurs, a broken hip, a collapsed spine, and very badly diseased bones with cancer raging inside of her. So, perhaps in her mind, why would I want to care for her. Look at it this way. A day out for Annie was a trip to the cancer center or hospital. She was surrounded by folks with cancer, people dying, and heard many horror stories. Like, husbands that leave their wives when the wife gets a cancer diagnosis and the husband can’t handle the work load. Now that may not be normal, but it does happen. Getting Annie to understand that I would always be there for her even though she was a disabled cancer patient that feels she’s become an unattractive burden on her husband was not easy. Especially with the stories of desertion she’d heard. Annie was scared. And of course in her mind Melissa was always going to be there, even though from a practical point of view that would not be the case. She had her hands full with her own family.
I felt that I knew what Annie needed and I didn’t need or want any advice.
Annie survived a nasty cancer for 30 months. Melissa and I struggled often, both wanting the best for Annie, but not being able to reconcile our differences at times, which strained our relationship. Cancer can create complex circumstances, that sometimes leads to questions that can’t be answered. So who gets the last word? The daughter, or the caregiver husband. Someone has to take charge of the loved one’s life, so they don’t feel like their life is spiraling out of control, or that their living in chaos. Don’t get me wrong, sometimes Melissa was right and I was wrong. But these were not always life threatening emergencies and when Melissa and I were having a disagreement or hot topic conversation in front of Annie, she would become nervous and get anxious. Once we realized what we were doing to Annie, we took our differences outside. I was and am Melissa’s dad, and I could shut a conversation off at any time by saying, that’s enough. However, Melissa was my child and I loved her dearly, and hurt for her. She was losing her momma, and I, my wife. We were struggling to find our own path and place in Annie’s life in those early days. And there were always going to be some disagreements, and learning to handle them with grace made life much easier for us all.
She was losing her momma, and I, my wife. We were struggling to find our own path and place in Annie’s life in those early days. And there were always going to be some disagreements, and learning to handle them with grace made life much easier for us all.
It’s been four years now since Annie passed and Melissa and I still don’t agree on some of the things that went on or the decisions that were made concerning Annie, and still find it easy to get into a heated discussion. But, we’re learning to steer clear of the discussions, knowing that some things will never change.
I spoke to Melissa last night and told her about the article I was going to write on our relationship issues. She gave me her blessing and said, be truthful Dad, our relationship is still strained and you know that. Sadly, I do. We can live, laugh, and love, but we can’t change “What Was.”
Cancer is a tough world to live in as a family unit, and agreements between family members where all parties are on the same page are rather rare, but one thing I know for sure, someone has to step up, be a leader and make the hard decisions. That was me, the “Caregiver.”
In conclusion, if I had to take care of Annie all over again, there is no one I would rather have as my “Wingman” than Melissa. Yes, we struggled together at times, but we learned, and we took care of Annie. One month before Annie passed I took her to her cardiology appointment to see Dr. Farhat, her cardiologist of twelve years. He stood in front of her and said, “Annie, do you know why you’re still here?” Annie remained silent and just stared back at him. He raised his right arm and pointed his finger at me as I stood beside her saying, “I am convinced of that.” Had Melissa been in the room, someone he knew well too, I’m sure he would have pointed to her as well. Melissa and I had our issues, our differences of opinion, but I took charge, and together we were a “Kick Ass” team. And I guarantee you, many people in the hospital, cancer center, the nurses, doctors, and all those that had the pleasure of meeting Annie, still remember her, her caregiver husband, and Melissa. We all three shared a deep unconditional love for each other, and wore it on our sleeve.
With many illnesses, there comes the risk of infection and even death from germs that a person with low immunity can catch, and are the same germs that we are exposed to every day that don’t affect a healthy person.
Here’s an example of what I’m saying. This week in March, 2015, just a few days ago it was reported that five elderly patients entered one of our local regional hospitals with unrelated causes and three ended up dying of a bacterial infection they picked up while eating ice cream that was served in the hospital. This was packaged ice cream and had nothing to do with the hospital. My point is, bacteria comes from germs and works in the same fashion. The germs may not affect me or you, but they could create a sequence of events in my wife Annie that could easily lead to pneumonia and take her life. So if you are a caregiver for a patient or loved one that may have low immunity to germs, check with the doctor and find out if that is something you need to worry about. And even it he says it isn’t at the moment, why take the risk of a serious infection for your loved one.
Here’s some food for thought. How many times have you heard of a person dying from pneumonia, unexpectedly? Where did it come from? Well, it’s normally viral or bacterial (germs), but can be from aspiration when one is vomiting. Regardless, “Think of the heartache that is caused everyday from a loved one dying too soon from an illness that is quite possibly preventable.” It doesn’t have to be that way. Keep your loved one or patient as germ free as possible. Disinfect the areas where they are sleeping and the items or places they may place their hands or touch. Keeps folks with colds away from them, and especially young kids going to school or off duty health care workers who are covered in germs. If a visitor comes to the house, let them in if you want too, just make sure they keep their distance from the patient. They can still talk to each other from a safe distance. Keep a bottle of disinfectant hand soap in your vehicle, and every room in your home. Also, you can use disinfectant wet wipes to walk around the room and disinfect any target areas that could be used by the love one. If they use the bathroom, disinfect/clean the toilet and the immediate area each time after use by anyone. Make sure the Porta potty is always cleaned and disinfected after use, to include the bed pan. These are the things that I did, and yes, they kept me busy. But, by doing all I could to keep her safe, I was investing in, hopefully another day with her. When I said I loved Annie, it was not just verbally, I loved her in the way I looked after her. I expressed my love through the things I did as her caregiver. It’s very difficult to do, but as I’ve said before, love will find a way.
When caring for a person that has little or no immunity on a daily basis, life becomes very challenging. My wife had multiple myeloma, blood cancer, which can destroy one’s immune system, such as was the case with Annie. She was always one germ away from a catastrophic event or serious infection.
Throughout her thirty month journey with her cancer, we probably met hundreds of patients that were being cared for, but, none were like Annie.
Annie was unique in that she had a deep love of humanity. She always wanted to give everyone she met a hug. She didn’t care if they were rich, poor, well dressed, or whatever, she would hug them if she could. Her love and caring ways for others became one of my biggest nightmares. How do I keep her safe from her own compassionate and loving ways? It was very difficult, as I didn’t want to suppress her love for others, but getting sick with little or no immunity, was not a viable option at the time.
One morning during the second month of her cancer, when we arrived at the cancer center, before I wheeled her into the waiting room among a bunch of sick people, I asked her to wait outside for a minute while I ran inside and got her a mask. Rusty, a senior pastor of a church and also a patient at the clinic where my daughter worked as a nurse, on her request met us at the cancer center in case we needed some help. He looked after Annie while I went inside. Annie and I didn’t really know him, but Annie in her English accent would later say, “He seems a nice enough chap.”
After I got the mask, I headed back out into the lobby to put it on Annie. When I got out there I was shocked to see the lady that walks around the cancer center with a basket of snacks she hands out to sick patients, kneeling on the floor in front of Annie. Her face was only a few inches away from Annie’s, and seeing that I guess I freaked out a bit. I asked her gently if she would move away from Annie as she had very little immunity to germs. (The lady had to be covered in them.) She didn’t acknowledge me. So with an elevated voice I let these words fly, “get away from her.” She fell back on the floor, Pastor Rusty fell into a chair, and it scared Annie. I was now a big creep–but I had accomplished my mission and that was all that mattered to me. I clearly knew the number one cause of death from Annie’s cancer was germs. I wasn’t there to make friends or make people happy, I was simply doing as I was told. Annie’s oncologist said it was imperative that I keep her away from as many germs, and carriers as possible. I spent a lot of time disinfecting all the things in the house that Annie could catch germs from, and I was not going to let anyone take Annie from me if I could help it. The lady had been a caregiver for her husband who passed from cancer and she had to of known the importance of keeping your distance from a cancer patient with low immunity.
Yes, I was a jerk for quite some time. But I was a twenty-four year military veteran and I was told to protect her from germs by the general, her oncologist. I guess I took it a bit too far. But I learned rather quickly that I could get the same results by being more diplomatic. But for awhile the nurses didn’t like me, then it happened. “They saw the love I had for Annie and my willingness to do whatever it took to keep her safe.” Annie was the love of my life and I was trying to be the perfect caregiver in an imperfect world. It doesn’t work that way. Looking back, I wasn’t a good caregiver, yes I took good care of Annie, but a good caregiver does not have to raise his voice to others. A good caregiver learns how to earn the respect of the doctors and nurses. And once that happens as it did for me, those people will do anything they can for you and your loved one. Nurses’ that at one point didn’t enjoy being in my presence, would come into Annie’s hospital room and say, “Annie, if I ever get sick I sure hope I have someone like Bobby taking care of me.” Annie would just smile.
Sadly many people make the assumption that when their loved one is in the hospital their safe from all the germs. That’s a myth. The hospital’s, especially the emergency rooms are full of germs, but awareness will help keep your loved one safe. Nurses can’t change clothes every time they enter a room, however, they can put on clean gloves. And when they need to, like when Annie’s immunity was low, put a sign on the door requiring all personnel to wear masks. Including them, the caregiver, and all guests. Still, you need to pay attention to what’s going on. One evening a CNA came into Annie’s room and helped her with the bed pan. When she removed the bed pan she dumped it in the toilet, then washed it in the bathroom sink where everyone gets washed up, and left feces all around the inside of the sink. I watched her do it. I was upset, but not abusive. I told her not to do that ever again, and explained why. I learned something that night, don’t assume anything when in a hospital environment. And it’s okay to hold people accountable–with a few diplomatic words. I also spoke to the administrator of the cancer ward and ask her to make sure the CNA’s were aware and trained on how to dispose of toxic waste. Annie was on Chemo, and her feces, urine, vomit would have had toxins in them, which can be harmful to the caregiver or others.
The Imaginary Black Box
It wasn’t too long after Annie was diagnosed, that I realized I had to come up with a plan to keep her as germ free as possible. Enter the “Imaginary Black Box.” One day it just came to me. It was becoming more and more difficult to set boundaries for others who just didn’t understand the situation Annie was in. And for Annie to understand that she needed to stop putting her arms out from her wheelchair to hug or get a hug from just about anyone she saw. By creating the “Imaginary Black Box,” I had a pre conceived boundary that I would not let anyone pass through. And I didn’t. If someone started getting too close, my hand would come up in a stopping motion, and I’d then explain to them that Annie had little immunity to germs. It worked great, and the only one that got upset was Annie. But over time she understood that I was only trying to protect her, which was a promise I’d made to her when she was diagnosed. I even used the imaginary black box while in the hospital, and we spent over one-hundred days in there. I made sure all medical personnel followed their own guidelines and any visitors kept their distance when necessary.
There were periods of time when Annie’s white blood cell count, her immunity, was high enough that I didn’t have to strictly apply these rules. Yes, she was still at a higher risk of getting an infection than others, but her white count, which I called her soldiers that fights off infections, was high enough to fight back most germs. I was still careful with her, but more relaxed.
I lost my Annie, but it was not over something I could control. If you take anything away from this article, take this. Don’t let your loved one die needlessly. Too many loved ones are dying from pneumonia’s that they should not be dying from. If you have low immunity from a treatable illness, and it doesn’t have to be cancer, your worst enemy will likely be germs. Germs can and quite possibly will take your loved one from you if you don’t set up your own “Imaginary Black Box” and keep them out.
I’ve been writing on awareness issues since Annie passed away. And I believe this is one of the most important issues I’ve discussed when dealing with cause of death. Remember, pneumonia is caused by germs–bacteria, viral, and fungi. Awareness can certainly lessen the chances of getting pneumonia and save the life of your child or someone you love dearly. Annie’s death could not be prevented, nor can the pain that still resides in my heart, but just maybe, I can help the unsuspecting stranger not feel what I feel on a daily basis. A little effort on your part can go a long way towards saving a life and allowing you to love your loved one–“One More Time.”
As I continue my series of blogs on Because of Annie, the next blog, Near Death Experience, Part 1–the cause & part 2–the effect, will show the cause and effect of just how bad things can get when a patient with low immunity is exposed to germs. It’s a very educational blog, in that you’ll learn things that most of you will not have known. For example, when they put a patient on oxygen and stick those two tubes in the nostril’s, at what point in terms of liters of oxygen does the oxygen start doing permanent and irreversible damage to the lungs. It’s a good thing to know. When a patient is on a ventilator, what are the guidelines on how long they should be on there before they need to be pulled off, to keep it from becoming a risk factor when taking them off. Annie’s pulmonologist had a set time for her, and the window was not that long.
“If You Love Someone Today, Try To Love Them More Tomorrow.” Life Happens!
When I entered the world of cancer as my wife Annie’s caregiver, quite frankly, I didn’t have a clue that this cancer world would be so complex. And of course, one would think the natural trend of thought would be more or less doom and gloom. Not much laughter, and very little happiness. Well as it turns out, that couldn’t be further from the truth. Cancer is a very large emotional puzzle with many pieces, some pieces are interlinked, fitting snugly, and many just simply don’t fit at all. It’s broken, and therein lies the problem.
Life Altering Words Of The Puzzle
An interlinked puzzle which has the snug fit will likely contained these two words at diagnosis–“Fortunate & Not Aggressive.” And that’s very important to a cancer patient and their loved ones. If you’re fortunate and your cancer is not aggressive, you will probably enjoy the fruits of a sweet remission. And that’s true in most cases.
As time went by and Annie and I spent more and more time at the cancer center or in the hospital, it became apparent to me that the fortunate patients were living their lives as they always did. Yes, there would have been a fear factor there, but they were still able to enjoy many of the things they always enjoyed.
When the pieces of the puzzle simply don’t fit at diagnosis, you may hear these two words–“Unfortunate & Aggressive.” “I need to get started on treatment of this poor unfortunate lady.” That statement was contained in Annie’s oncologists notes from the day of her diagnosis. He further stated that her blood cancer, multiple myeloma, was very aggressive. In other words, her fate had already been sealed. Also on that day, these words were spoken and really do speak to the nature of an aggressive cancer…”I don’t have two weeks, I don’t even have two days!” That statement was made by Annie’s oncologist in response to being told she could start the clinical trials in two weeks. Unfortunately she needed her chemotherapy now, and once she started her treatment she would no longer be eligible for the clinical trials. And that’s how it was.
Here’s my analogy for the fortunate verses the unfortunate multiple myeloma patient.
When Annie was first diagnosed with multiple myeloma, there was a lady at the cancer center that had just been diagnosed with it too. The other lady was much like Annie, probably in her late fifties, well cared for, and seemed healthy.
We met her a year later in the treatment room, a few weeks after they both had their stem cell transplants. That day when we arrived at the treatment center I pushed Annie into the room in her wheelchair, with badly diseased and many broken bones, some put back together with wire. When the nurse took us over to our treatment spot, Annie recognized the lady immediately. She looked happy, well, and was in remission. Annie, on the other hand, looked happy, but unwell, and with the diseased bones, was disabled. Annie was in remission too. Annie cancer was aggressive, her friend’s wasn’t. There’s probably a million ways I could say that, but, fortunate and unfortunate is all I really need to say.
While I was sitting there with those two ladies, I could not help but draw the parallel between the two. I’m pushing Annie around the cancer center in a wheelchair, while the other lady has a cell phone in one hand and her car keys in the other. Such a stark difference. But this sort of encounter allowed the humanity in Annie to shine through, and this was the beauty of Annie, things like that never seemed to bother her. She had accepted her fate, but was not going down without a fight, and always happily cheering for the survivors.
It would have been reasonable for Annie to have left the room that day and feel a sense of self pity. But that wasn’t the case. She was very happy to see her cancer friend doing so well. As for me, I was a bit jealous. I wished Annie could of had a normal remission too, and not always sick.
Short stories of Unfortunate Patient
One afternoon while Annie was laying in her hospital bed in the center of our living room, I asked her if she would stay in the bed, while I went to the market and picked up some staple food. She said she would, but I could tell by her smiling eyes she was fibbing. As I started to walk away, I quickly turned around facing her and said, you’re fibbing aren’t you. She just laughed and said, go on. With her badly diseased and damaged bones, she needed me with her when she got out of bed. Of course, this was just another sad reality of cancer—sometimes the caregiver may have to leave the home for just a bit.
Annie and I were different. We strived to be independent of everyone, and for the most part we were. Annie virtually had no immunity to germs on a daily basis. We had to be careful around others, and for the most part children were off limits as they carry around so many childhood germs. Dr. Tom Moore, later on in Annie’s illness was nominated to be the assistant director to the CDC, was Annie’s infectious disease control doctor, and her oncologist’s son. He told Annie and me that we had to be very careful wherever we went, he said she could catch any germ out there, with potential life threatening consequences.
When I left the house I thought I knew what she was going to do. Climb out of her bed into the wheelchair, wheel herself into the dining room, sit at the table and have a cup of her beloved coffee.
After I arrived at the market, I grabbed the shopping as quickly as I could, and was home within twenty-five minutes.
Here’s a point of interest and an example that speaks volumes to the humanity I found through Annie’s cancer. When I hit the market, I didn’t walk to get the shopping, I ran at a slow trot through the market. Being a regular for over seventeen years, many of the employees and some of the customers knew my dilemma. When I got to the line to check out, occasionally I would be moved to the front of the line by a few kind words from a checkout clerk, to the folks in line. Once in awhile a supervisor would see me and escort me to customer service and take care of me there—I never had more than a few items. But I didn’t feel like a VIP, Annie was dying and it was important for me to spend every minute I could with her. People respected the situation I was in, and I certainly would have done it for them. I saw what I saw! People care. (Cancer does not discriminate, and when you enter that world, to most of us it was color blind, and there were no republicans or democrats. Just one large family of cancer and their caregivers, all living on hope.)
When I arrived home and walked through the inside garage door into our hallway, I was shocked when I saw the wheelchair. It was sitting at the foot of our steep stairs. I immediately yelled upstairs, Annie! Are you okay!
She replied, saying that she was just sitting and looking at her clothes and shoes. Try to imagine what must have been going through her mind.
While I was gone, she got out of bed, into the wheelchair and wheeled herself to the stairs. She’d crawled up 4 steps, made a left turn and crawled up 12 more to get upstairs. From there she crawled into our bedroom and had managed to squirm her way onto the edge of our bed.
After I sat the shopping down, I went upstairs to check on her. As I walked into the bedroom she shifted her line of vision to me. I could see her teary eyes, with some understanding of what she was feeling. She had all these beautiful clothes hanging in her walk in closet, with all sorts of different shoes and boots. She was trying to come to terms with her new and sad reality, in her mind, she would never be able to dress up and feel pretty again. (And I have never met a female that does not want to look pretty.)
That night I called Melissa and we put a plan together. She came over and we cleaned out the downstairs hallway closet and Melissa brought down many pretty outfits for Annie to wear when she went to her appointments. At that time, a day out for Annie was going to the doctor’s office, cancer center, or being hospitalized.
Anything the healthy Annie wore, in my opinion, she rocked it. But when a person has a collapsed spine that is bowed out, how can they feel pretty. (In a soft voice) They can’t.
One day I was getting her ready for her appointment at the cancer center. I put a pair of dark, warm full length tights on her, she picked out a short skirt, and some sort of beige western shirt with mother of pearl buttons inlaid in chrome. I got her dressed while she was in the wheelchair. When I helped her stand, she looked in the mirror and said, oh Bob, look at my back, it looks terrible! As I sat her back down, I felt her sadness, but there was nothing I could say to her that was helpful and would be truthful. Of course, in my mind I was thinking that she sure is beautiful to me. But what does that mean to a terminally ill cancer patient with a badly bowed spine, who two months earlier looked normal. Not very much. It did help when I placed the wheelchair in front of the mirror and had her look at herself from the side view. From that view her spine and back looked normal. Funny enough, she cheered right up. She was now in costume.
Understand, as a caregiver we must never assume we know how our loved one or patient feels. We should be compassionate and kind to them, not force our opinion, and simply acknowledge their feelings. Our job is to point them in a positive direction if we can. They will, in their own way and time, come to terms with the wretched cancer and the not so nice side effects. Life happens, and in time they learn to make the best of each day.
When she arrived at the cancer center, I wheeled her back to the patient’s room where we waited for Dr. Moore Sr.
A Precious Moment
He came walking into the room, very matter-of-factly and focused, while at the same time looking at Annie and saying, “Ann, where did you get that shirt?” “I love it.” Her face just beamed, she lit up the room with her smile. Looking back, I would have paid him to say those words, but I didn’t have to. The look on his face was genuine and honest. He made her day, and probably her week. Of course, this is Kansas, maybe the western shirt brought out the cowboy in him. I don’t have a clue.
This little story is a testament of Annie’s tenacious will to live, and feel pretty.
It was on Feb 11th, 2010, when I was told Annie needed hospice now! I’ll write about that another time, but the bottom line was, I took her home against all odds and strong protests from some doctors, allowing this cute little story to be told.
It was in April of 2010 that one of the home health agency workers who had been coming over for awhile, two days a week for an hour to give her physical therapy—was on his way over.
She was sitting in her wheelchair in front of a mirror fussing with and brushing her hair, while putting on her makeup. I must admit, I did recognized that she was being a bit more fussy with her look that day, then normal, and became fascinated with what she was doing, until it dawned on me, “Allen was coming over.”
I said, “Annie, Allen is coming over today.”
She replied, “Oh, is he.” As if she didn’t know. Priceless!
That put a big smile on my face, and truly was a testament to her beautiful spirit. That’s the will to live until you die. Annie was living hour by hour, day by day, and everyone knew it, including her. Somehow she did what she always did, “Put a smile on her face, got on with her day and enjoyed it as best she could.” Annie was an amazing, inspirational person.
If you have a loved one who is terminally ill, enjoy every minute you share with them. Love them, make them laugh if you can, and watch them carefully. They will teach you things that only they can comprehend. Annie taught me so much about living one’s life to its fullest.
It’s so obvious to me now that, a patient with any terminal illness is living in a world that we can’t reach. Their sense’s are so different and much stronger than ours. Their level of consciousness is on a much higher level than we’ll ever get too. Their minds open up to opportunities and possibilities we can’t even imagine. Yes, I was a very good and loving caregiver for Annie, but in depth of thought she was always one step ahead of me. When she popped out that old timeless question of, “how long do I have left” to Dr. Moore Sr., it caught me off guard and will forever haunt me. I was thinking about living, apparently she wasn’t. When we started her comfort care, she asked me another timeless question. “How long will it take me to die–one or two days.” The depth of those questions can’t be underestimated or matched. Because of Annie
Annie has a beautiful online memorial and has had over 63,000 visitors
In this article on dominant verses non-dominant caregiver I’m applying it to spouses. However, it can apply to anyone where there is a caregiver to patient relationship.
My wife Annie and I owned an estate sale business for almost twenty years. We kept it up and running until the time of her cancer diagnosis. We averaged between twenty and twenty-four estate sales a year. Many of the sales we conducted were for older couples, and many with one of the spouses in a care home, or hospital. One of the things that stood out most was that there was always a dominant spouse, usually the male, but not always. Annie and I watched and worried about how adversely some of the non-dominant spouse’s were being treated by the dominant spouse. Even from a hospital bed, a dominant spouse can create havoc and chaos for their non-dominant spouse caregiver. I’ve seen it many times. At the time, I really didn’t know what a caregiver was, but now that I do, being a non-dominant spouse caregiver appeared to be a very difficult and frustrating position to be in.
Giving my all
When Annie was diagnosed with multiple myeloma, blood cancer, over a period of thirty months, we spent over one hundred days in the hospital and separately made over one hundred trips to the cancer center where the waiting rooms were always filled with patients and caregivers, many being spouses.
I was Annie’s caregiver 24/7. I gave her everything I had in me, and when that was not enough I found the strength from within to give her more. When I say a 24/7 caregiver, that was kind of meaningless in my case. Annie was dying from day one, and within the first 3 weeks some of my days were 35 hours long. And then a two hour nap might be possible while she was sleeping. Annie had so many broken and diseased bones from her cancer she was on 200mg of morphine a day, plus Percocet and a fentanyl patch for breakthrough pain control. That’s why it was imperative that I stayed awake so long. That amount of pain medication will put a person to sleep forever. I didn’t want that and became committed to not letting it happen. In my case there was no domination anywhere, it was all about love. I loved Annie fiercely, and was willing to do what it took to care for her while she adjusted to the pain medication. I lost over 18 pounds over a period of the first couple of months. But I never gave up, or gave in. We fought together as a team, and I led her through very troubled waters many times, always directing and leading in her care. I made many mistakes, as I was a novice caregiver at first, but my leadership still allowed her to feel safe and the trust builds from there.
I was Annie’s caregiver 24/7. I gave her everything I had in me, and when that was not enough I found the strength from within to give her more.
So I understand what it takes to be a good spousal caregiver. And I think that the key to being or learning to be a good caregiver for your spouse begins with the level of love you share, which I believe to be the glue that binds spouses together during the hard times. Beyond that it would be empathy, compassion, and a lot of unselfish hard work. The opinion that I am giving on dominant verses non-dominant spousal caregivers is just that. My opinion. It’s based on hundreds, if not a thousand or more observations of caregiver to patient relationships. Many being spouses. I could throw many more areas of contention in the fire here too, on both sides, but I think this article makes my point.
Which spouse makes a good caregiver
This is my opinion based on my observation of dominant spouse caregivers…They rarely make good caregivers. Reason being is they fail to address the concerns and emotions of their non-dominant spouse patient, due to lack of empathy and compassion for their spouse. Yes, they will provide care and ask questions of the doctors, but due to their inability to empathize with their spousal patient they don’t feel the need to share the information even if the spouse asks. In other words they like too, and will maintain total control over the patient. When you see a spousal patient sitting in a chair, head down, with dribble running down their chin and soiling their clothes while the caregiver is reading a magazine or news paper and making no effort to show love or caring for their spouse, the caregiver will most likely be the dominant spouse.
The non-dominant spouse on the other hand makes a good caregiver for many reasons. One, is the fact that a non-dominant spouse, that allows the dominant spouse to dominate him/her through many years of marriage is, because the non-dominant spouse is usually empathetic, compassionate, and non-confrontational. They care, and they get it. The non-dominant spouse caregiver will discuss anything and everything with their spouse and go to great lengths to make sure their spouse is as comfortable as possible. Here’s what I found curious. A dominant spousal patient in a hospital bed and very ill, just by making certain eye contact with the non-dominant spouse will provoke emotion and quick action from the non-dominant spouse. That is the fear factor. And many of you know what I’m talking about.
The Power Struggle
One of the things that can make spousal care giving more difficult is in fact the dominant spouse effect. In most relationships one of the spouses will be more assertive or dominant than the other. If the caregiver happens to be non-dominant, the dominant patient can and often does make the caregiver’s life miserable. In most cases they do it because they can. In other words, you let them. Don’t allow yourself to be drawn into a power struggle with your spouse. It will be a lose, lose, situation for you both. Once the resentment builds up, it’s hard to shake off.
Don’t allow yourself to be drawn into a power struggle with your spouse.
As the non-dominant spouse you have to learn to work yourself into the team leadership role. After all, you are partners. Most likely, initially your spouse will be very resistant to any change in their role from being the dominant spouse. That’s understandable and normal. Here’s how you reduce the burden of stress and resentment on your spouse. All changes in their role as the dominant spouse need to be as subtle as possible and slowly implemented over time. Quick changes can create chaos and you don’t need that. And if you’re going to be the team leader, lead by example. Be consistent with any schedules you set up. If a bath or body wash is set up for 10:00 A.M. each day, do it on time. Not two hours later because something came up. Yes, there will be times when things happen or go wrong and you can’t meet the schedule. Well, once again be a leader. Explain the situation to your spouse, and what you’re going to do about it. It’s pretty much a given that a dominant spouse wants to know everything, wants everything to be consistent, on time, and more. They don’t handle chaos that they can’t control, very well. Make sure the lines of communication are open at all times, as best you can. Explain any changes to medication or schedules so they have a clear understanding of what’s going on. Talk to your spouse; Lead.
The dominant spouse caregiver takes on a whole different role. If he/she don’t give you your bath on time, you’re not likely going to complain. And if you do you will most likely be met with, “you should be thankful I’m giving you a bath at all.” A non-dominant spouse feels pain, too. If the non-dominant spouse asks for break through pain medication while the dominant spouse is busy, well, good luck with that. They’ll get to you when they feel you need break through pain control. To a truly dominant spousal caregiver, your broken back from cancer is just a back ache. Stop making a fuss!
Dominant spouses need to be in control of their lives and will control yours if you let them. Even if a dominant spouse is sick in the hospital, they will likely want to retain control over the finances. And that’s often the way it is. So you have to help through leadership. Don’t make paying bills the source of an argument. Now, I could sound educated and tell you to gently nudge them into giving you the account information, but I’m not, and I won’t. Because it doesn’t work that way. Deal with reality, and reality is, “Honey, you’re too sick to be paying or worrying about the bills, let me handle it for you this month.” In all likely hood, because you are not making this sound like a permanent transition, the spouse may say, “That sounds like a good idea.” Followed by, “I’ll take care of it next month.” Remember, make transitions over time and with leadership. Even the most resistant of spouses will follow you if you show them good leadership, order, and lead them away from chaos. After all, even though they may not be letting you know how they feel, as they believe it shows a sign of weakness on their part, they may be feeling internally that their life is steaming out of control. Good leadership will create awareness and help solve the problem.
Dominant spouses need to be in control of their lives and will control yours if you let them.
As a non-dominant spouse, good leadership is so important. One of the reasons you’re in the position you’re in as a non-dominant spouse is simple. Your spouse never felt that you we capable of doing many things right. And the explanation for that usually filters down to the dominant spouse’s childhood. Learned behavior, and not easy to change. But the objective is not to try and change your spouse, rather for you to learn to be diplomatic and show your spouse that you’re very capable and will do whatever it takes to be a good caregiver and take care of household matters too. Being a caregiver never was and never will be easy.
If you love each other, let the love shine through
Of course, what I just said may not apply, as some circumstances are so complicated and complex that trying to follow any sort of guidelines just won’t work. My advice for both spouse’s is to communicate, and talk to each other about your needs. If you love each other, let the love shine through. And if for some reason that’s not the case, be a humanitarian and do the right thing.
Once Annie and I saw a lady in her mid fifties at the cancer center. When we saw her she was standing in the laboratory, leaning against the door opening and vocally crying. When she left I asked the nurse if she was okay, and she responded by relating a very sad story to me and Annie. The nurse said the lady had been in remission from her cancer, and now that the cancer had come back, her caregiver husband packed his bags and left, saying he was not going to go through that again. And on that day, the lady refused all further treatment, saying she did not want to live without him…Would he be a dominant or non-dominant spouse? I don’t know the answer to that question, not knowing either party. Regardless, how sad is that? But it happens more often than you think. Being a caregiver for a loved one can be a very tiring and thankless task, but if you can’t do it, than who will?
I acknowledge that the caregiver system in this country is broken. But there is a glimmer of hope as noted in all the publicity it’s been getting in national newspapers and magazines. And The Caregiver Space is doing all it can to promote awareness, and bring change to a very difficult arena of life. Sadly, for now all we can do is the best we can with the tools we have to work with. I wish you the best.
If You haven’t read part 1 and part 2 you can read them here.
To the bereaved, after the death and decision making can be very difficult.
In my case, letting the funeral home or mortuary handle all the legal stuff to include pertinent notifications was very important. When I entered the funeral home, I had no idea what I was doing, and they knew it and took over. It was a blessing.
When I entered the funeral home, I had no idea what I was doing, and they knew it and took over.
This last article will cover the funeral home experience and take you on a trip to England where Annie is resting.
It was a sad reality for me, as Annie and I had spent over half of our lives together, and never once thought this could happen to one of us. Well it happened, and in the process really rocked my world. I’m now of the understanding of just how vulnerable and fragile life really is. I didn’t just lose a spouse, I lost a child too. I was also in love with “Little Annie,” Once again I must reiterate, that “If you love someone today, try to love them more tomorrow.”
That was a bad night for many reasons; and even though I had accepted the fact that she was gone, the thought of her lying alone and cold in the morgue was troubling me. That’s just a sad reality of life and death. But it made me more determined than ever to honor her core wishes. I needed to get her out of the morgue and back home as quickly as I could.
I only had two instructions for Watson Funeral Home. These were also two of Annie’s wishes as said by her: “Don’t let lie around in the morgue, and have me cremated as quickly as you can.”
Fifteen hours after she left our home she was cremated.
Thanks to a great team effort at Watson Funeral Home, her ashes were handed over to me at the 36th hour from the time she left our home. Her ashes were in a beautiful ebony container which would have pleased Annie. Some of us put little love notes inside the container that would be placed with her in her final place of rest.
The morning after Annie passed away, Andre and I went to the funeral home. I had Doug Watson, the owner, and his office manager, Chancy, help me with the logistics of getting Annie’s ashes back to England. They handled all the TSA paperwork, ordered the death certificates and notified other pertinent agencies, like the Social Security Administration, of her death.
November 10, 2010
Andre flew Annie’s ashes back home to England, and with the TSA paperwork in hand, he had no problems with customs officials. I had asked him to retain custody of the ashes at all times if he could. He said he was able to keep her safely in his arms. It was so important to me that this part of her journey went flawless. And I knew he would not let me down.
That is the rose garden I talk about and she is in there to your right.
Just over a week later, Annie’s ashes were sprinkled in the “Chelmsford Crematorium’s Rose Garden.” That fulfilled two more of her wishes. Getting her ashes back home quickly and sprinkled in the rose garden with her mother and two sisters.
In the old days they literally sprinkled the ashes. They don’t do that anymore, although they still call it sprinkling of the ashes.
I will be going over May 2nd, 2011, to visit her. While there, I will make a plaque for the crematorium’s wall and add her name to the Book of Remembrances. I can’t wait! I could have made the trip sooner; however, Annie and I always knew when the time came, Andre would be here, and take her ashes home.
Approximately three weeks after Annie passed away, I made the journey up to the cancer center to see Dr. Moore Sr. He really had no idea of the circumstances surrounding her death, and I knew he would want to know. Once I arrived, I walked by reception and went straight back to the nurses’ station. None of the nurses had seen me since a short time before Annie passed away, and were overwhelming with their condolences. They all thought very highly of Annie and felt her loss too.
I asked Sarah if I could see Dr. Moore Sr., she said I could, and had a nurse escort me to a private room next door to the doctor’s office. I sat and waited for about fifteen minutes until he came in. He listened intently while I explained to him how she died. When I was through, he put a beautiful smile on his face and said, “they know when it’s time, don’t they! I always thought they did. He went on to say that under the circumstances her death was a blessing as she died of low plates and not multiple myeloma. He told me multiple myeloma is a horrible excruciating death, and during the process, if the patient rolls over in bed, or has to be moved, bones simply break, causing an almost uncontrollable pain. So it would appear, that Annie was spared a very painful death.
May 2, 2011
KC-135 Tanker engines as we approach the coast of England as the sun begins to rise.
I flew out of McConnell Air Force Base on a KC-135 Tanker bound for England at 5:00 P.M. The flight took approximately eight hours and was very interesting, as during the journey I got to see the sun set in the west and rise in the east. We landed at RAF Mildenhall in England at 7:00 A.M., May 3rd, 2011.
From RAF Mildenhall, I hired a taxi to take me to Annie’s hometown of Chelmsford, Essex, England. It was a seventy-mile drive, but went by quickly, as luckily I had a very attentive taxi driver, whom I had a wonderful chat with about my beautiful English lady. He enjoyed the story and gave me some wonderful positive feedback.
The ride also gave me time to check my emotions, as I’d made that journey many times before in 1971. As a young Sergeant, I was stationed at RAF Lakenheath, which is next door to RAF Mildenhall. I made that drive almost every day to go spend time with Annie when we were dating. A lot had changed with the new motorways (highways), but I still went through some small villages and saw some familiar sights.
I arrived at Andre’s house around 10:00 A.M., and after a warm greeting and a couple cups of coffee, we walked to town, where I rented a car. While doing the paperwork, he asked me if I was ready to visit the crematorium. With anxious anticipation, I told him I was ready.
We left the car rental agency, and drove straight to the crematorium. It was around noon when we arrived at their gates. As you turn off the roadway into the crematorium grounds, you’re immediately surrounded by beautiful trees and gardens. I was a bit disappointed as the roses were just starting to bloom, but that was only for a fleeting second or two, as my goal was to find Annie. As we wound our way down the narrow roadway, we started seeing people everywhere. A large funeral had just ended, which made things feel a bit awkward at first. But as I settled in and refocused on my goal, I could feel the excitement racing through me as we got closer to her site. Still, I was able to see the pain on some of the faces, as I navigated the vehicle through the crowd.
As I parked the vehicle, it became apparent we’d be walking through a crowd of grieving people. As we walked through the crowd I was nervous, but it went well. Many of the people acknowledged us as if they knew why we were there; and of course we returned the courtesy. As Andre guided me over to Annie’s site, I looked back and noticed that many of the people were watching us. I guess the look on our faces must have made the nature of our visit obvious. We walked between the rose bushes, and about five feet away lying on the ground was a red rose, that Andre had put there last week. He then pointed to a spot about six feet away where there was another red rose. That’s where his mum Wendy was resting. Annie would have been pleased being so close to her sister Wendy.
As I looked down on Annie’s site, I could clearly make out the shovel marks from what looked to be an eight—by twelve-inch dig. As I got down on my knees, with my right hand index finger I was able to traced the outline of her site. I put my hand, palm down on top of her sight and said a few words. I stood up with tears in my eyes, and said to Andre, “She’s not there!”
He just stared at me; but I knew immediately that all my questions had now been answered. Annie was tucked away safely in my heart, and in that better place she called “Heaven.” She was safe!
As we walked away, Andre confided in me. He said he felt the same way when his mother was placed there.
It was a comforting feeling, knowing that when I left for home in a few days, everything was going to be okay.
May 5, 2011
The pub lunch, but I’m not in it as I took the picture. The huge piece of cod is part of my fish and chips lunch.
Andre and I went back to the crematorium, this time with Joe, one of Annie’s good friends. When Annie passed, I called him in England and gave him the sad news. He asked me, and I made him a promise, that I’d get in touch with him when I arrived and he could come to the crematorium with me. Joe helped us start our antiques journey in the mid-1970s. He wanted to see her site, and leave her some flowers, as did I. He also wanted to be there when I ordered her plaque and entered her name in the Book of Remembrance. After we drove away, we went out and had a wonderful English Country Pub lunch, and of course, we had a pint of ale to go with it. It was a good day.
I was in England a total of six days, and only went to Annie’s site those two times. In the future when I go there, it’ll be out of respect, as I won’t be looking for her. I know where she is, and going to stay. I will tell you a little secret; Annie not being there was a blessing. I was so worried and afraid that I was going to leave England and feel like I was leaving her behind. That would have been a heavy burden for me to carry.
While I was in England I had this plaque made to place on the “Wall of Remembrance,” in the Rose Garden.
On Sept 4th, 2011, I started slowly building Annie an online memorial – you can still see it. Currently she has had over 63,000 visitors. There are over 80 pictures on there and all have a short story attached. Annie was a true humanitarian, and her love of humanity will not be forgotten.
End of life care
If you haven’t read part 1, you probably should.
Along with this blog, it will give a complete picture to an alternative to hospice, when needed. And further provide some much needed education on how to help a loved one during their final days or hours. As much as we’d like to think hospice is a one size fits all, it’s not. For some people it just won’t work, and that was the case with Annie, as explained in part 1. So as a family unit we join hands and do the best we can. This is the way it was for Annie, and sure to move many people to tears as they view death through the eyes of a loving family.
This blogs picks up where Melissa was preparing to start comfort care (end of life care) for her momma. Remember these words from a loving daughter in the part 1—“My momma brought me into this world, and I can help her out.”
Melissa would be giving Annie 20 milligrams of liquid morphine, and 1 milligram of liquid Xanax, placed inside her mouth, near her cheek, and down by her tongue; and it had to be administered on the hour, every hour, using a small syringe like instrument. We also had a bottle of liquid atropine to give her, when the “death rattle” started.
My momma brought me into this world, and I can help her out.
When Melissa started comfort care, I was standing a few feet behind her by Victoria, and Beverly was sitting beside the bed in the wheelchair holding Annie’s hand.
She said to Annie, “Ann, now you know what will happen when I let go of your hand?”
Annie responded, “Jesus will take my hand.” (Annie’s last audible words.)
Beverly said, “Absolutely! Praise the Lord!”
Annie trusted me more than anyone, but it was appropriate that Beverly start her on her new journey to eternal life. After all, she was Annie’s “Angel.”
In Annie’s mind she was going to heaven. Faith is very powerful, and in its truest form can be especially helpful to those fighting terminal diseases. She certainly appeared to be at peace with her decision to get started on her new journey. Annie had already been to hell and back with her cancer. After all the suffering, in my opinion, it doesn’t seem right, or make sense, that the only thing left for the sufferer is death. Surely there is more to life than just death.
The one thing Melissa did that really pleased me, was how she spoke to her momma when she was giving her comfort care. The first few doses, she’d tell her momma, the dose I’m giving you, is the same as dad gives you and won’t hurt you; and it will help your breathing and relax you.
“So please momma, don’t worry.”
Melissa’s statement was factually true in the short term; but in the long term, Annie would start her new journey.
There were seven family members at our home, including me. Andrew and Hannah are Melissa’s older children, 18 and 16, respectively. Eli is Victoria’s son; and he was 11. He stayed upstairs most of the time playing video games. Then of course there was Beverly. We classify her as family.
We made a family agreement that Annie would have someone in the wheelchair at her bedside at all times, and holding her hand. We just took turns as needed or wanted. Melissa would administer all the medications.
Over the first couple of hours of comfort care, every now and then Annie would wake up, raise herself up off the bed a bit, smiling and trying to laugh. She couldn’t speak, but her mumblings were of a person trying to join in on a conversation. I was starting to realize she was hearing what we were saying. “I asked myself, how could that be?” She had enough morphine in her system, that she shouldn’t be waking up at all. So all of a sudden, what we said and didn’t say became very important. Annie seemed to be happy, so we needed to carry on and speak in the same dialogue and manner we’d been speaking. There would be no crying, but if one of us needed to cry, we would cry with silent tears. Annie didn’t need to hear a bunch of sad people sitting around her bed crying. That would make her sad, and in a sense spoil the peaceful journey she was on. Annie would want to pass over in peace, and we all became committed in making sure that she did.
Once again, Annie came through like a trooper. She gave us another gift, by letting us know in the only way she could, that everything was okay.
She was getting ready to start her new journey to life after death, and appeared to be happy. Morphine in liquid form helps the patient relax, creating a stabilization effect, which calms the breathing, slows the body down which in-turn would slow the bleeding process down. Annie was breathing well and obviously not anxious due to the Xanax.
November 2, 2010
Just after midnight, I was sitting in the dining room when Melissa called out, “Dad, something is wrong with Mom.”
She came running into the dining room looking for the flashlight, saying mom’s head just started shaking. I jumped up, gave her the flashlight, and followed her back to Annie. Melissa scanned her eyes, and they were unresponsive. We noticed that her left cheek near the left side of her mouth had dropped a bit. It was obvious, she just had a brain hemorrhage. We were expecting it, but nonetheless, that was a painful moment. We knew it was coming, which was part of our urgency for starting comfort care. But it didn’t change things, as Melissa still had to stay on schedule with the morphine and Xanax. It was more important now than ever.
About fifteen minutes later, Annie started the death rattle, which was very distressing to listen to. I gave Melissa the atropine to administer to her mom, and it worked perfectly. Over a short period of time, Annie completely relaxed again.
Without the liquid morphine, Annie would have suffered a great deal of pain from the hemorrhage; but as it happened, she didn’t appear to suffer at all. Her face still had a relaxed look, and was not distorted.
As I write this story, it’s almost as if it were textbook perfect in places. It really was! Never underestimate the power of the creator. I was now of the opinion, that our reward for taking care of Annie through her journey as we did, is quite easy to understand. We were able to hold and love her until the last possible moment. We weren’t lucky; and I believe this was how it was meant to be.
Around 2:00 A.M. or so, I went over and took Melissa’s place in the wheelchair. She’d just given her mom her next dose of medication. I told her to get on the sofa and take a nap, and I’d wake her up at 3:00 AM when the next dose was due. Melissa needed some rest, so I gave Annie her 3:00 A.M. medication. Watching Melissa’s strength and courage, giving her momma the drugs knowing full well what the outcome was going to be, made me strong again.
I knew Melissa would carry the sad memory of giving her momma comfort care the rest of her life, there was no getting around that. But I could help her out, and give her little breaks.
By now, I knew from the heart what comfort care was. When administered properly, and especially by a loving family, the loved one can pass over in peace.
Dying is such a personal experience, and in general I think the world can be very cold when dealing with terminally ill patients and loved ones. I know the hospitals and hospice do care about the patients, but you still have to remember the bottom line; it’s about money. What we did for Annie, was purely about “Love,” and honoring her wishes.
Melissa woke up, and gave the 4:00 A.M. medications to her momma. I had just got back in the kitchen when Melissa called for me.
“Dad, Mom is trying to call out your name! She wants you!”
I went straight to her, and as soon as I saw her, I knew she was a bit restless. I sat down in the wheelchair, and put her hand in mine. I started kissing her hand, then whispering words of love to her in her ear. She calmed down almost immediately; and her breathing became less labored. I tried to pull my hand away from hers, so I could lay down beside her; but she wouldn’t let go of my hand. With help from Melissa, I still managed to get up on the bed and lie down beside her. When I did that, she released her grip. I was able to lie close to her, tell her how much I loved her, thank her for being my wife, and kiss her beautiful face. It was a beautiful, emotional, precious few minutes; and I fell asleep loving her.
When I awoke, it was a couple hours later, and someone showed me a beautiful picture of us lying together. Victoria took the picture over Melissa’s protests. Victoria lived and worked in Georgia, and had been out three times while her mom was ill. She and I talked several times a week and I always kept her updated. I also promised her when things were bad, I’d send for her. She didn’t know my rules of not letting anyone take a picture of Annie when her condition was compromised. As it turned out, the picture is a national treasure to me; and one I shall always cherish.
Not long after I got off the bed, Melissa was leaning over near her momma’s face and quietly singing “Que Sera Sera, whatever will be will be, the future is not ours to see, Que Sera Sera.” When she pulled her face away, Annie had tears running down her cheeks. That was a gut wrenching moment! When a person is in a deep coma, as was Annie’s case, sometimes they do indeed hear our voices. The song had been a family tradition for a long time. Annie’s mom used to sing it to her as a child and Annie sang it to her daughters when they were children. Now Melissa was singing it to her momma, and obviously Annie was hearing her.
It was very difficult for me to comprehend what had just happened. Annie had been on heavy drugs now for almost eighteen hours. It really didn’t make any sense to me, but it was apparent that Annie was a gift to us, and one that just kept on giving. Acknowledging Melissa’s song with her tears, was absolutely priceless to that child. And under very traumatic circumstances, it really doesn’t get any better than that.
Through the early afternoon hours we kept on holding her hand, and loving on her as best as we could. Around 3:30 P.M. I received a phone call from Dandurans’s Pharmacy. They called to tell me Annie’s medications were ready for pickup. I told them I was on home delivery, but apparently they didn’t get the prescription in time, for them to make the 3:00 P.M. delivery. That put me in a bad position, as we couldn’t afford to let Annie run out of medication. But not being able to release the drugs to anyone but me, meant I’d have to leave the house. This late in her comfort care and I didn’t want to leave home.
Around 3:45 P.M., we received a call from Andre. They were having equipment problems with the airplane, so he’d not be in until 5:00 P.M. I knew he anxiously wanted to get here to say good-bye to Annie, and really I had no reason at the moment to believe he wouldn’t make it on time.
When Melissa started comfort care, I had no idea she sent Andre a text message telling him to prepare himself. She wasn’t sure how long the process would take. Sometimes it takes two or three days, or maybe longer. We had no way of knowing.
Around 3:50 P.M. I was sitting in the wheelchair by Annie, explaining to her why I had to go pick up her medications. By that time, I wasn’t sure she even heard me. There were no signs of stress on her face, and she seemed comfortable. I left almost immediately, but was concerned that she might have problems when I was gone. I really didn’t want to leave her, as she trusted me and responded well to my voice.
My ride to the pharmacy seemed like it took forever; but in reality is was only fifteen or twenty minutes. When I arrived, I felt a rush of anxiety shoot through my body when I saw the line of folks filling prescriptions. After a long agonizing fifteen minutes, when I got to the counter, the pharmacist walked over and put the medications in front of me. He apparently knew who I was. At that precise moment, my cell phone rang; and it was Melissa shouting in the phone that Momma was gone. She had so much pain in her voice when saying, “Daddy, she waited for you to leave!”
I just looked at the pharmacist and said, “I no longer need the meds. My wife just passed away.” He just stared at me; I think he already knew what the conversation was about.
He simply said, “Get going.” I ran out the door as quickly as I could and started the long drive home.
I think Annie’s passing while I was gone was how it was meant to be. I wasn’t supposed to see her die, as our thirty-month journey together was about living. I already had too many traumatic memories locked in my mind, so I believe, she spared that burden.
On my drive home, I called Melissa back to see if she had made the appropriate notifications. She had to call 911 for the paramedics, and Dr. Klein.
Not too long before I got home, Melissa called me and said the fire department personnel and paramedics were there and wanting to resuscitate mom. Melissa told them she was a DNR, but they needed the paperwork; and with the overload going on in her head, she was having trouble locating it.
I told her to try to hold them off, as I’d be there in a couple of minutes with a copy from my wallet.
She told them, but they said they couldn’t wait for me, which upset me, but I understood. However, as she’d been transported to the hospital many times by the paramedics, one of the paramedics that came in behind the others recognized her from previous visits and was able to confirm the DNR. There was also a two-by-three-inch red-and-white sticker on our front door that said, “File of Life.” That meant, “Do not resuscitate.” I suspect Melissa or someone was holding the door open when they came in our home, so they didn’t see it. Of course, we didn’t think of it either. They were just trying to doing their job.
I knew whatever they did wouldn’t hurt her, and that it wouldn’t have worked anyway. She was starting a new journey to a place far away from all the pain and suffering. It was now time for a deep eternal love.
Annie’s reasoning for the DNR was simple. She didn’t want to come back to a body with more broken ribs. Her ribs were so compromised by the cancer that pushing on her chest would have been a painful disaster for her.
When I arrived home, there was a fire truck or two, the paramedics, and a police car. When the family does comfort care and don’t use hospice, it’s my understanding that emergency services are told to advise the police department of the death. Officer Mattson was the responding officer, and was very polite, courteous, and professional in his investigation. In the state of Kansas you can legally do the comfort care for your loved one. Your state may have different laws, so make sure you know what you’re doing. When the police officer arrives at your doorstep, he’ll do a thorough investigation. If you as the caregiver think it is time for comfort care, get the doctor’s confirmation before you start. I’m sure as the doctor probably knows the patient, it could be done over the phone. A doctor will come to your home after the patient passes, give the pronounced time of death and the police officer will file his report on the death, based on the doctors input. In our case Annie’s family doctor came over; but had it been a different doctor with no knowledge of Annie’s illness, I would simply have referred the officer too Dr. Klein.
When I got out of my vehicle and started walking toward the house, Melissa came running out crying, in obvious pain. I gave her a big hug, and while crying with her, I simply said, “It’s going to be okay, sweetie.” As we walked back to the house, I was able to acknowledge the fire department and paramedics as they were preparing to leave.
Once I got inside, it was like being in a fog. I walked straight over to Annie, raised her up, so I could lay her body across my lap, and cradle her head in arms. When I kissed her I could feel the warmth of her lips, and as I held her cheek to cheek, I had a strong sensation of wanting to hold onto her forever.
Melissa had the blanket raised, and was rubbing her momma’s legs, while telling me how beautifully warm they were.
I was not in shock, as I believed I was given ample warning this day was coming soon. I was pleased that the suffering was over, and felt comfortable about the new journey she was on. But, on the other hand, selfishly, the pain and hurt of knowing I’d have to live the rest of my life without her was a bit unbearable at this moment. I just wanted her back! I can say this without any reservation. If I could have her back, even as she was, I would love and take care of her until the end of my mortal stay on this earth. That would be my promise to her.
When Dr. Terry Klein arrived, he walked over to Annie and checked her pulse. The pronounced time of death was 4:52 P.M., November 2nd, 2010. He visited with the police officer, and confirmed he knew we were doing comfort care for Annie.
I remember while holding Annie, that Victoria was sitting on the floor near the head of the bed, rocking back and forth while crying. Melissa was doing her best trying to help the police officer with his investigation. I believe he stayed just over an hour. Hannah and Andrew left to go to the airport and pick up Andre, shortly after their nanny passed. They both adored their nanny, and after watching her pass, it must have been a difficult drive.
Hannah told me that she and Andrew waited in the airport lounge for Andre, and as he walked up, they’d both been crying. Andre knew immediately that Annie was gone. Andrew told me they just stood where they were, made a circle, hugged each other and shedding some tears.
Andre arrived at our home about 5:30 P.M. I asked everyone to leave the room so he’d have some quiet time with Annie. I looked in the room at him; he was kneeling beside the bed, hands and fingers clasped together on the bed with his forehead on his hands. I understood his sadness. He’d lost his mom in December 2001. Now, the second most important person in his life was gone too. He was definitely in pain and showing signs of emotional distress.
I’m not sure what time it was but Sarah from next door (a national award winning hospice nurse) came over, and took charge of Annie. She and Melissa cut Annie’s nightdress off and gave her a nice bed bath, and dressed her in one of her favorite nightdresses. In her healthy days, Annie was always meticulously clean when she went out. This would be her final outing, and although different, she looked beautiful.
After everything started calming down, Melissa told me her momma took two deep breaths with a sigh, then her eyes opened wide. Victoria was holding her moms hand when she passed away. She told me her eyes were sparkling, as if she’d seen the new promised land.
Not long after Annie died, Janet from next door, and Annie’s angel “Beverly” and her husband Gene showed up. Gene led the family in prayer, as Beverly was too upset.
The paramedics, fire department, and Dr. Klein told the family how peaceful Annie looked. There was no signs stress seen on her face, which validated my thoughts that if there is such a thing as a peaceful death, we’d just witnessed one.
Annie was very graceful throughout her journey, which I believe allowed her to die with peace in her heart.
At this point so many things were filtering through my mind. I wondered if maybe all the struggles she had with the cancer and it’s wretched side effects, just wore her out, and she was ready to pass over to the other side. Or, was it’s simply that her creator was fulfilling his promise to her. I knew as a physical being I would never be able to resolve that question as it entered into the world of the unknown; however, to Annie the question was answered earlier in her journey, and from her perspective I knew it was all about faith.
A few days prior to Annie’s death, I’d asked Melissa to stop by the funeral home and make them aware of our situation. I wanted her to get all contact information so we were prepared, and make it easier for me to fulfill Annie’s core wishes.
At some point, Watson Funeral Home was notified of Annie’s death and arrived around 6:00 P.M. The gentlemen that came over representing the funeral home were Larry Sutherland and Matt Speer. Those two gentlemen were incredible, and met all our needs and more. They were patient, compassionate, and very professional in their duties. I was as protective of Annie in death, as I was in life, but soon realized I didn’t have to say anything to them. They treated her like a princess or one of their own. They gave us all the time we needed to say good-bye to her, while standing in the background like a couple of Honor Guards. When we were through saying good-bye to Annie, I asked Larry what the remainder of the process was. He told me they’d get her ready and on their way out, we could say our last good-bye. When they were through getting her ready, it appeared she was in some sort of body bag, which had a beautiful heavy burgundy blanket draped over the top, which left her head exposed for viewing. They then moved her over near the front door, where we all took a turn at saying our last good-bye to her. Once everyone had a chance to wish her farewell, she left our home for the last time. Melissa and I escorted her to the hearse.
I held Melissa tight as we watched the black hearse pull out of the driveway, heading down the road. The visual for my daughter and me will live in our memories forever. That’s when it finally sunk in and I knew our lives would forever be changed.
Part 3 of, “Only Love Can Break A Heart,” talks about the technical side of what happened after Annie left our home, (death certificates, etc) for the last time, to include what it took to get her ashes back to her motherland, England. And my trip over there on an Air Force KC-135 Tanker, to include a trip to the beautiful Rose Garden in her hometown where her ashes were sprinkled.
Annie’s beautiful online memorial has had over 63,000 visitors.
In general, spousal care is very challenging and brings a very complex set of emotions to bear. Sometimes when my wife Annie refused to cooperate, which she did at times, I found myself feeling frustrated, ticked off a bit, and sad, all at the same time. Those were all very normal feelings and directly linked to each other. As a caregiver, my emotions or feelings were a reflection of the level of care I was trying to provide for her. What my emotions were saying is that, I love you, and I’m trying to do the best I can under some difficult circumstances. “Please help me, so I can help you.” And of course, I was often singing to the choir as Annie didn’t care what I was feeling at that moment in time. It becomes a stalemate. I simply didn’t understand. Sometimes I would get upset, frustrated and slowly walk into the kitchen. But as always, the words “Empathy” and “Compassion” creeped into the conversation that was going on in my mind, which are crucial words that enhances and helps promote quality care giving.
I would peek around the corner from the kitchen to the living room and see her lying in her hospital bed, helplessly losing a little more ground to the cancer each day, and it just made me want to cry—and at that point, which was earlier on in the cancer, I knew I could, and I must do better. I’d immediately go to her bedside, give her a kiss and tell her how much I loved her. She responded well to my emotional turnaround, and in her own loving way let me know that “I wasn’t understanding what she was going through.” She was spot-on. I didn’t have a clue as to the emotional toll the cancer was having on her. I learned something during those early days, “never assume I knew how she was feeling emotionally.” Annie was going through a living hell, she had a death sentence from a nasty cancer and there was nothing anyone could do about it.
In my humble opinion, I believe the level of spousal care is driven by our love for our spouse, compassion, and our empathy. Of course, there is so much more to spousal care giving than what I just said, but love, compassion, and empathy are three essential ingredients that lay the foundation for quality spousal care and in many ways is the glue that binds spouses together during the difficult times.
The first two months I just spoke of, became a testament to the power of love. Many of us enter the world of being a spousal caregiver without any knowledge or concept of what we’re getting into. We’re simply caregivers in training. It can be very complicated, and will offer up challenges that can drive our emotions to a level that we’ve not seen before. Anger, frustration, trying and understanding the loved ones needs, are all a part of the initial processing of information and emotions, and quite normal. Sometimes, I felt like I was driving in my car at a high rate of speed and slowly losing control of the vehicle. Instinctively, I knew if I didn’t fight back to regain control of my vehicle I was going to crash–Welcome, “To The World Of Spousal Care.”
Are you a current or former spousal caregiver? Join our free, private online peer support group with Bob on Tuesdays at 10pm est.
The loss: Going home, part 1
To this point I’ve written a series of blogs on a caregivers journey through cancer with his loving wife, Annie. I’ve barely skimmed the surface, but I’m seeing a void out there that needs to be filled now. It’s estimated that there are over sixty-five million caregivers in this country. And many of the caregivers will be dealing with end of life care. Through Annie’s journey I’d like to help them. In this three part blog you, the reader, will learn things that I personally couldn’t understand or know until I traveled the journey with Annie. My goal is to help as many folks as I can understand the truest form of end of life care. This is a beautiful blog and will pay homage to my wife Annie. She was a great humanitarian and her life was all about helping others, so there’s no doubt in my mind she would want this story to be told. She’ll be the teacher, you the student. Annie will shed some light on the term, end of life care. Gene Pitney wrote a song years ago with the lyrics, “Only Love Can Break A Heart.” That’s simply one of the tragedies of being a caregiver for a loved one during end of life care.
November 1, 2010
It was around 7:00 A.M. and I was lying on the sofa when I heard her sweet little voice say, “Bobby I don’t feel well.”
I jumped up and came out to the dining room table where she was sitting in her wheelchair. I guess, for whatever reason, this was how it was supposed to be. It was so unusual for her to get up and I didn’t know it. She said she got up around 6:00 A.M., had a cup of coffee, then wheeled herself to the kitchen sink where she washed her hair and brushed her teeth.
I said to her in a soft voice, “What’s going on Annie?”
She looked so sad as if she knew what I was going to say. She started pulling her nightdress up, wanting to show me her Ostomy pouch.
I was just staring at her rolled up tissue on the dining room table; and as I unrolled it, I discovered that it was full of bloody mucus. On previous occasions, if there was blood, it would usually be light pink. I knew from the tissue that her lungs were filling with blood, and if I didn’t act soon she’d go into full respiratory failure or have a brain hemorrhage. I needed to start preparing her for comfort care; but with my emotions now overwhelming me, I was in a dilemma. How do you tell a loved one, it’s time to die? I tried to stay as calm as I could for the moment. Dr Moore Sr., previously told me when the process started my timing would be critical. Worse case would be a bleed out, which would be a very traumatic event, and Annie would be fully aware the whole time. As I said before, all I’d be able to do was hold her tight and love her through it.
I will never forget these words or this conversation.
She looked at me and said, “What am I going to do?” Her eyes were directing mine to her Ostomy pouch.
All I saw was blood in the pouch.
I simply said, “At this point Annie, there’s nothing we can do.”
She asked me if she could go to the hospital. I told her we couldn’t, and reminded her of the promise I made her. If we go to the hospital, there’s nothing they can do, and they won’t let you come home.
She replied, “So this is it!”
“I believe it is Annie.”
She laid her little head back onto the wheelchair and closed her eyes.
I asked her if she would like a Xanax, and she answered, “Yes, please.”
So I gave her a Xanax tablet.
At this point, I could never describe how I was feeling. Everything was so conflicted. Annie loved life so much, and I wanted it for her. But I knew we were in a race with the clock. Once again, I felt that the train had left the station; and this time it was flying out of control down the tracks. There was no way to stop it now. We’d used up, what I was now believing to be all of Annie’s miracles, and she would soon be going home.
I suppose to keep hope alive, and to confirm my intuition, I asked her if she’d like to go see Dr. Klein.
Her answer was a simple nod, “Yes.”
There were times in her illness when she’d hear bedside talk, and start thinking the worse. I promised her at some point in the illness, after I had command of, and understood her cancer, when it was time I’d be the first one to let her know. On several occasions when she was having difficulties, and getting anxious, my simple reassuring words, “This isn’t it, Annie, we’re going to get through this one,” would calm and relax her. She trusted me, and knew I would always be honest with her when the time came. I was her soul mate; and it needed to come from me. I knew she only had a few days left a couple of weeks ago; but as she had such a good Halloween evening last night, this morning caught me off guard. It must have been the calm before the storm.
It was about 8:30 A.M., and Annie had fallen asleep. I called Melissa and told her it was time; but Mom would like to go see Dr. Klein. Melissa came straight home to her momma, we got her bundled up, and Melissa pushed her in the wheelchair to the car. I helped her in as I always did, and then we took the short five minute drive over to Family Medicine East.
Melissa must have told her colleagues that we were on our way, as when we got there, the room was ready for us.
Melissa wheeled her momma in, while I walked beside Annie.
Not long after we entered the room, a nurse came in and drew her blood. We really didn’t need to do that, but we did it for her. The platelets were under 3,000; she was in the process of bleeding to death. We had to move fast to prevent her from suffering a catastrophic event.
After looking at the blood test results, Dr. Klein came in, and kissed her on the forehead.
Dr. Klein in a very sincere voice, asked her what he could do to help her?
She simply said, “tell me this isn’t happening.”
He explained to her that we’d reached the end of what medical technology can do.
Annie asked him, “Is that the bottom line?” He nodded his head to indicated it was.
At that point, I lost control of my emotions. I left the room, walked straight to Melia’s office, who’s the clinical coordinator.
I told her I couldn’t give Annie the morphine for comfort care, explaining that I fought for thirty months to keep her alive, I wasn’t going to be the one.
In a rather stern voice she told me I had no choice!
My response was, “I didn’t care, I’m not going to do it.”
Dr. Klein apparently overheard our conversation, and came walking up.
He told me I had to give her the morphine.
I snapped back, “I couldn’t.”
Melissa came running up, gave me a stern look, and told me Mom was looking for me.
Melia awkwardly explained to Melissa what our discussion was about.
Melissa eyes seemed to be questioning the reality of the moment as she looked at Melia and said, “I’ll do the comfort care.”
In words that only a loving daughter can speak, Melissa quietly and calmly said, “My momma brought me into this world, and I can help her out.”
Those words made me shudder, as the realization that we were now officially on a slippery slope to death, was settling in.
Melissa and I walked back to the room to find Annie with her head lying back in her wheelchair, staring at the ceiling. We both gave her a loving hug, and were just getting ready to push her out of the room when the door came open. I guess the news traveled fast throughout the clinic as there was a long line outside the door of staff members waiting to see Annie. One at a time, they entered the room: all of them gave her a hug, some said they loved her, some gave her a kiss, and of course, some simply gave her a loving hug in silence. There were lots of tears; but none of them said good-bye as they didn’t have too. Annie knew what they were doing.
I know, even though she didn’t say it, and under very difficult circumstances, through her tears she felt honored.
On our way home, Annie was sitting in the front seat, wrapped up in her blanket. Melissa was in the back seat, sitting forward, with her arms wrapped around her momma. Annie just stared out the window, as if looking at nature and life in general, for the last time. It was a somber drive home.
I think Annie was tired of fighting cancer, and living in a very diseased body; and who wouldn’t be. Spiritually she was ready to move on to what she believed was a world of no pain or suffering. Her tears were easy to explain. Not only was she leaving the only life she’d ever known, she would be leaving all her loved ones behind; who she knew would experience a deep torment in a way they’d never known before. Grief!
By the time we got home, Victoria and Beverly were sitting at the dining room table. Melissa wheeled her momma to the table, and parked her wheelchair in its familiar place. I walked over to the coffee pot, feeling the uneasiness in the room, and poured Annie a cup of coffee. We must have sat there for an hour or so, as Annie sipped on her coffee, probably sensing this would be the last cup of her beloved coffee she ever had. The mood was so awkward; and none of us really knew what to say. I had called Beverly that morning and asked her to come over, as I knew Annie would need her.
I remember Melissa kneeling down beside her momma, rubbing her legs and holding her hands.
Her mom looked at her, and spoke these words, with so much grace, love, and elegance. “Remember Mel, you were always my “peace.”
A few minutes later, Annie gave us all a gift, when she looked at Melissa and peacefully said, “Let’s get started.”
Annie, in one of her final gestures of grace, had just let us all off the hook. The final decision had just been made, and Annie, in her wisdom, was getting ready to start her new journey to “Life after Death.”
She knew she was running out of time, as every time she coughed, it was bloody phlegm.
I wheeled her into the living room and helped her onto the hospital bed, with Melissa, Victoria, and Beverly following.
Once I got her sitting up comfortably, she looked at me and softly said, “How long will it take me to die, one or two days?”
My reply was a soft and sad, “I don’t know Annie.”
That question will haunt me for the rest of my life. It’s the kind of statement I will take to my grave. It’s difficult to understand how a person, being so aware of their situation, can keep their poise while staring certain death in the face. How do you do that? Annie was so graceful in dying and in death.
A few minutes later her nephew Andre, who was due in tomorrow afternoon, called her from England. Their conversation wasn’t very long, but it covered the most important aspect of life. They spoke of their love for each other, in a very personal and meaningful way. I remember her telling him she’d try to hold on until he got there.
The conversation was very painful to listen to, as Annie really loved him; and took on the role as his surrogate mom, when his mother Wendy passed a few years earlier from cancer.
Not long after she spoke with Andre, we laid her down. The visual of her laying there, and knowing that when she took her first syringe of morphine, there would be no turning back, was taxing every emotion in my body. I knew I was on the verge of an emotional breakdown, but somehow I had to stay focused on helping Annie through these troubled waters. I even tried to talk Melissa and Beverly into giving her morphine and Xanax in tablet form; but I knew I was just stalling for more time. Bless their hearts, they tried for me, but she couldn’t swallow. It was apparent that her throat was closing down, and her breathing was becoming labored. Yet another sign, that her body was starting to shut down. Annie was on her way out of all this pain and suffering; and I knew in my heart there was nothing I could do. I couldn’t save her.
I asked for some private time with Annie, and then laid my chest across hers, put my arms around her, and lost it. I cried like a baby, as I was so hurt. I know it sounds like it’s all about me, but that isn’t even close to the truth. Over the course of the illness, Annie and I became one. I hurt for her because she had to die, and for me, I was losing the love of my life. While I was crying, all I could feel was her right hand with the sports bandage on, rubbing me, up and down my back. Annie was dying and comforting me. I gave her everything I had for thirty months. In return, she gave me enough love to sustain me forever, and some of my most incredible memories.
As I raised up off of her chest, I looked her in the eyes, told her I loved her, and she said, “I love you too.” I rubbed my hand across her forehead, letting it gently slide down over her hair. After a soft and tender kiss, I turned and disappeared into the dining room.
I truly believe in some way, beyond the imagination of many, “I was kissed by an Angel.”
After I left the room, Melissa walked back into the room, told her momma she loved her, and immediately started comfort care. The time was 2:00 P.M.
Part 2, the journey begins
Part two is sad, but very educational for those looking for answers. We didn’t use hospice, as it was doomed to fail with her. Beyond that, death is so personal I felt it had to be handled delicately, and with the love and compassion only loved ones can render. And that will be clear for all to see.
June 19, 2008
At approximately 11:00 A.M., I was sitting in my office at our antique shop when the phone rang. It was Tracy, Dr. Moore Sr.’s nurse. She asked me to take Annie to the cancer center at 3:00 P.M. to see Dr. Moore Sr. I instinctively knew that we were in trouble, as the results were supposed to take seven days, but it had only been three days.
I asked her if it was bad news. (What I am going to tell you next is pretty accurate—some conversations one doesn’t forget).
She simply said, “Your wife has multiple myeloma.”
I remember getting very anxious, and with an elevated voice, I asked her, “What is that?” I had never heard of multiple myeloma before.
“It’s cancer of the bone marrow.”
I asked if she was going to be okay. “What’s the prognosis?”
Tracy said in a soft voice, “It could be three or four weeks, maybe a little more,” depending on whether or not she could take treatment and how well she responds to the chemotherapy.
At that point I started crying profusely. I just couldn’t wrap my head around that sort of news.
She kept saying, “Please calm down.”
I was a mess! I kept saying, “What will I tell Annie?” It’s only 11:00 A.M., and her appointment isn’t until 3:00 P.M.
Tracy told me to tell Annie she has a blood disorder and that Dr. Moore Sr. wanted to talk to her about it. Tracy indicated that she had spent two days going over Annie’s medical records, and couldn’t figure out why she was still alive.
Apparently, in her words, I was a very fortunate man to have her this long. What a nightmare! Panic was starting to set in and I didn’t know what to do!
My emotions were so elevated. I sat in my office for a while, then walked around our large antique shop for at least an hour, just trying to focus. The tears were flowing, when it suddenly dawned on me that all the beautiful antiques I was surrounded by were now meaningless.
A lady came in the shop, looked at me, and asked me what was going on.
I told her, and she replied, “Oh my God, I’m so sorry,” and then left.
That was my welcome to the world of cancer.
By 1:00 P.M. I had gotten myself together and called Annie. I told her what Tracy told me to say, which wasn’t completely truthful, but I didn’t have the courage or words to tell her the devastating news. Annie said she would be ready when I got there.
I told her I would pick her up around 2:15 P.M. Of course, I wanted to run to her, but I knew if I did she would put two and two together, then panic would set in. She needed to hear it from her doctor.
Annie was always a lady of many questions, and why she accepted the reason she was going to the cancer center without wanting to know more of what Tracy had to say, will remain a mystery.
Maybe there is some truth in the statement that Annie’s sister Wendy made to her before she was diagnosed with cancer. She said to Annie, I’m sorry, but I’m going to take you through a long dark tunnel. “I have cancer.”
Annie told her not to be silly, and that she didn’t have cancer.
Wendy explained to Annie that when their baby sister Tracy was diagnosed, she spoke of an unusual odor about her. Wendy said that she too could smell a strange odor.
I wondered if it was possible that going to the cancer center triggered Annie’s senses and she could smell an odor too.
Annie never said a word to me about our previous visit, but it certainly seemed at the time she knew something I didn’t.
When we arrived at the cancer center they had a room reserved for us. It was the same room we were in on our previous appointment. We went in, sat in the same chairs, while the nurse took her vital signs.
Shortly thereafter, Dr. Moore Sr. came in, rolled a stool over and sat in front of Annie. I’ll never forget the look of dismay on her face when he gave her the diagnosis.
He told her she had multiple myeloma, and that it was terminal, metastatic, not curable, but treatable. He further stated that multiple myeloma has three stages, and that her cancer was in stage three, with her bone marrow being over eighty percent cancer.
I guess it would be like someone offering you an apple when you were starving; eating eighty percent, then giving you the core.
While Annie was talking to Dr. Moore Sr., there was a knock on the door. When he opened the door, Nurse Lisa, a well-dressed lady, came walking in.
Lisa was the nurse in charge of putting new patients on the clinical trials.
Lisa spoke to Dr. Moore Sr. about the requirements for the clinical trials, and some new changes coming out.
Dr. Moore Sr. seemed a bit agitated when he asked her to go see if Mrs. Harrison would qualify for the clinical trials.
Raising her arm and holding up what I believe was a copy of the current laboratory report, Lisa told the doctor that based on Annie’s HGB being so low, she would not qualify for the clinical trials.
Without hesitation, and a strained look on his face, Dr. Moore Sr. said, “Well then I will transfuse her!”
Lisa simply nodded her head in acknowledgement of the doctor’s words, and left the room scampering down the hallway to her office.
After Lisa left the room, Dr. Moore Sr. explained to Annie that her best hope for survival would most likely come from the clinical trials, potentially using new drugs that weren’t on the market yet.
But it seemed Dr. Moore Sr. was in a bit of a dilemma. Apparently he needed to start chemotherapy right away, but once he started giving Annie chemotherapy, she would no longer be eligible for the initial phase of the clinical trials. He also said that once placed on the clinical trials, most of the treatment for the disease is free.
After his short but to the point conversation with Annie, he excused himself and left the room for a few minutes.
After he left the room, Annie and I just sat there quietly staring at the wall. I tried to reflect on what we had been told, but other than the key points, I don’t remember much of anything that was said during the first half of the appointment. Annie appeared to be in shock, and I knew in her mind her life was spiraling out of control. Her eyes looked so empty and sad as she stared straight ahead at the butterflies on the wall. As I stared at her emptiness, I wasn’t sure what to say to her, but knew I had to say something. I got on my knees, put my hands on her cheeks, looked her in the eyes, and said, “I promise I will love you, take care of you, protect you, and won’t let anyone hurt you.” At that point she lowered her head down to mine, and we simply held each other and wept.
I was sitting beside her holding her hand when Dr. Moore Sr. came back in the room. The first thing he did after looking at Annie and me, without saying a word, was walk over to his desk and get us a tissue. He then rolled his stool back over to us and started revealing his strategy. We had just started talking when Lisa returned.
Lisa told the doctor that the study had been shut down for two weeks, but when it reopens, Annie would be eligible.
He looked straight at Lisa, speaking with a very elevated voice, and hitting the table with his fist he let these words fly; “I don’t have two weeks, I don’t even have two days!”
It was apparent from his frustration and tone in his voice that Annie’s fate had already been sealed. It wasn’t a matter of whether she was going to survive, but rather how long she would survive.
I have a copy of his progress notes dated June 19th, 2008. “I hope to get started by next week on treatment of this unfortunate patient.”
While we were in his office, he noticed that Annie kept rubbing her right hand. He asked her if her hand was hurting.
In a soft voice, she told him “It was very painful.”
He checked her hand and told her she appeared to have carpal tunnel syndrome, which he said was caused by amyloid buildup around the nerves of her hand.
Amyloid is basically malignant plasma cells creating an abundance of abnormal protein that deposits in the body’s tissues. If the deposits reach any of the body’s vital organs, they can block the organ, causing the organ to fail. The kidneys are the most likely target and should be watched carefully. It was just another one of those things we had to worry about.
He picked up the phone and called Dr. Lucas, a specialist on carpal tunnel syndrome, and explained his suspicions to him. Dr. Lucas set us up for a consultation on the 24th of June.
Eventually we started talking about his strategy, which was going to be two different types of chemotherapy. His first choice was IV Velcade, which was a very good drug for the disease, but hard on platelets. That would be administered on Monday and Thursday of each week at the cancer center treatment room via an IV. During that same period, Annie would take melphalan, which was an oral chemotherapy, administered one pill a day for four days in conjunction with Velcade. Melphalan has rather nasty side effects so he decided to give her only one four-day course. He also prescribed pain medications; one 15 milligram extended release morphine tablet every eight hours, and Percocet 7.5/500, one to two tablets every six hours as needed.
Dr. Moore Sr. told us of another chemotherapy drug called Revlimid, which is taken orally. Relatively new on the market, the drug is tightly controlled and very expensive. I guess it was the gold standard drug for multiple myeloma, and was used in some of the clinical trial patients in combination with other drugs. It was a cleaner drug, and the side effects weren’t as bad as those of the other drugs. At the time there were only a few pharmacies in the country that carried it.
After a lengthy discussion with Annie about the drug, he looked at me and said, “I doubt your insurance will cover it.”
I immediately saw a worried look come over Annie’s face. I told her not to worry, when we eventually ran out of money, we would refinance our home and get more. This was so typical of cancer, as treatment is very expensive. Sadly, I knew this wasn’t going to be a long-term illness as Annie was too sick.
Dr. Moore Sr. asked me to accompany him down the hallway so we could check on my insurance coverage.
As I walked, it occurred to me that this would have been a very difficult visit for Annie without me, for many reasons. At the moment Annie was just trying to come to terms with her emotions, and answering questions about our insurance coverage was not something she needed to be concerned about. Her plate was full! When the doctor and I walked out of the room, she was just sitting in her chair staring at the colorful butterflies. Her eyes looked so empty, I’m sure she was looking through the butterflies into the unknown, as it would be hard to see the beauty in anything when surrounded by so much darkness.
The big question, the one I instinctively knew seals many cancer patient’s fate, and always comes right after the diagnosis, was now coming to visit Annie and me; “What sort of insurance coverage do you have?”
I knew I had heard that question before outside the world of cancer, but at the time it was meaningless to me. Now I was feeling the panic and the worry of not knowing how good, or how bad, our insurance coverage was. One way or the other, the answer to the question would potentially give her more time, or her journey would be over very quickly.
Dr. Moore Sr. guided me over to one of his secretaries, and had her send a request to TriWest seeking approval for the Revlimid. To our surprise the drug was approved immediately. It was a “high-five” moment.
I’m a veteran with twenty-four years of military service, and was told when I enlisted that I would have health care for the rest of my life if I served my country over twenty years. That also included my spouse, and children until they became adults. It appeared that the promise made to me all those years ago was being kept.
Dr. Moore Sr. gave me a big smile and guided me to his office, sat me down, and thanked me for serving my country. I guess he just wanted to do that in private.
He said, “Bob, I wish everybody had insurance like yours, we could help so many more people.”
Dr. Moore Sr.’s statement was very moving to me, as he said it with such strong conviction towards helping others.
He asked me some questions about Annie’s medical history, and then walked me back to her room.
When we walked into the room with smiles on our faces, she was just sitting in her chair, still staring at the butterflies. As her head turned our way I knew immediately from her body language, as our faces came into focus, that she sensed the good news.
Dr. Moore Sr. looked straight into her eyes and told her the drug had been approved, and in her case offered the best possible chance of getting some sort of remission.
Annie’s response to the good news was a beautiful smile that seemed to light up her face. I desperately wanted this moment for her, and it was wonderful seeing her smile.
He explained to me that Annie was very fortunate, as the sad truth is, when a person gets the initial cancer diagnosis many insurance plans will only approve the cheaper chemotherapy drugs. If the cancer doesn’t respond to the low end drugs, depending on the type of insurance coverage one has, they may be elevated up a level to the next drug. By the time the patient is elevated to a drug that gets a response to the cancer, it’s sometimes too late for a cure or extended survival.
As we were getting ready to leave the room, I glanced at Dr. Moore Sr. who was still sitting on the stool with his head down, appearing to be deep in thought. I heard him mumble some words under his breath: “God help us if she can’t take Velcade.” When he looked up, he saw me staring at him with inquisitive eyes. He said, “It’s nothing Bob, I was just mumbling under my breath.”
I got his message!
June 20, 2008
As today was a Saturday, I was surprised that we had several appointments at the Wichita Clinic. Once we arrived at the clinic and checked in, Annie was taken back to radiology by a nurse. She was having a metastatic skeletal survey to find other areas where the cancer was located. They essentially X-rayed her entire body.
When the technician returned Annie to me, she had a concerned look on her face when she asked me, “Does the doctor know about this?”
For an instant I was stunned. I looked at her and said, “Know about what?” It was as if for that split second, I had forgotten that she had cancer. I quickly gathered my thoughts and told her he knew, but apparently was looking for the various locations.
That sort of set off more alarm bells in my head, as technicians don’t usually comment on X-rays.
In addition, while at the clinic they drew nine or ten vials of blood for analysis, and did an EKG to check her heart function. Her kidneys and liver functions were screened as well.
It was obvious to me after all the testing on Saturday that Annie and I were in this way over our heads. What was most troubling to me was not understanding the disease, and the fear of the unknown.
From Annie’s lack of communication with the healthcare professionals, I think she was just trying to come to terms with her illness. She wanted me to take charge of her chaotic life for now, which was my promise to her; and one I intended to keep.
June 23, 2008
I called Dr. Moore Sr. and told him how much pain Annie was in. She was suffering from severe pain in her bones.
He said he wasn’t surprised as he has seen the skeletal survey, and decided to up her dosage of extended release morphine tablets. She would now be getting two 15 milligram tablets every eight hours.
The pain in Annie’s hand was a real problem and a constant reminder of the uncertainty of the new journey she was on. At times she would stand behind one of our dining room chairs, sedated from the drugs, using her good hand to hold onto one of the chairs for stability, while continuously shaking her other hand as if trying to shake the pain away. Sometimes that would go on for over an hour and be repeated throughout the day and even into the night. I was always standing beside her, or behind her, giving her additional support as she would literally fall asleep while standing. She was so tired, but due to the relentless pain, going to bed was not an option at times. We were both very tired, but managing as best we could.
June 24, 2008
I took Annie over to see Dr. Lucas, who took some X-rays and spoke with her about the surgery. Annie wanted the surgery as soon as he could do it, as she would have rather lost her hand than fight that sort of pain. Her surgery was scheduled for the 7th of July, which I felt was too long of a wait, but apparently until all her test results were in there would be no surgery.
Annie was starting to get tired and the fatigue factor from all the pain, stress, medications, and her worsening condition was starting to set in. But we couldn’t afford to look back, as we weren’t going that way. Our only choice was to keep pushing forward.
June 30, 2008: Today we met with Dr. Moore Sr. at the cancer center in regards to Annie’s skeletal survey. Having a reputation of being a no-nonsense type of person, Dr. Moore Sr. laid everything on the table.
He told us her X-rays showed she had bilateral fractures in both femurs from the disease. Also, she had multiple myeloma in her skull, spine, hips, and ribs. Her skull was peppered with multiple myeloma lesions, but her kidneys and other vital organs were functioning adequately.
At that time, the possibility of using radiation therapy in the future was discussed. That would possibly destroy the tumors in her hips, but also adversely affect her blood counts. He set her first chemotherapy date for July 7th, 2008.
It seemed reasonable to me that if you were just told you had bilateral fractures of both femurs you would find the nearest chair and sit down. Annie wasn’t like that! When we left the cancer center she walked very slowly, with me by her side. I understood her decision of not wanting to get into a wheelchair, as in her mind it would reinforce the fact that she was now slipping further down the slippery slope she was on. I really didn’t want her to walk on fractured femurs, and I told her I didn’t think it was a good idea, but loving her the way I did, well, I guess it just got in the way.
Dr. Moore Sr. would like to have started the chemotherapy earlier, but her condition was such that he had to wait until all her vital organs were checked for damage from the cancer. Sometimes cancer is diagnosed at such a late stage, there is nothing they can do. His window of opportunity was very small, but he was jumping through it. Annie’s treatment, once started, would be difficult for her to tolerate and very aggressive; but would offer her the only hope of any length of survival.
Dr. Moore Sr. had the Revlimid ordered that day, but the pharmacy couldn’t ship until they were able to talk to me. I called the company later that day and verified all of the information. I had to talk to three different folks to get it ordered. It would be delivered by FedEx to my doorstep, and I had to be there to receive it. It was still going to be a couple of weeks before they could ship.
Even though Annie wasn’t a believer, she was on many prayer chains. She was in a battle for her life, and she knew it. We both humbly accepted anyone and anything that might give her an edge.
At this point in her illness, Annie was dealing with her elevated emotions, and I believe, starting to grieve. It was very painful watching her, knowing that any logical conclusion would indicate that her condition was only going to get worse.
What I’m going to share in this blog is very important to a caregiver of a cancer patient needing pain control, or a loved one visiting a family member or friend with cancer that needs pain control. Sometimes things are not as they seem. I was a first time caregiver and when I ran into this situation it was new to me. But, if you read this blog, it won’t to be new to you. And that’s my goal. Always!
On December 26th, 2009 at 1:00 A.M., Annie entered the hospital on what turned out to be a fifty-one day stay. She was really sick. Of course, they have rules in the hospital. A patient can’t administer their own medications. In Annie’s case, she was on 200mg of morphine a day, so when she came in she was hooked up to IV narcotics (I called it mainlining), usually Dilaudid, which is five or more times stronger than morphine. Annie had such badly diseased bones from the cancer, multiple myeloma, she had to have round the clock pain control. This was to be her seventh or eighth stay in the hospital which were usually two weeks max. So I had no idea of the difficulties this pain medication, Dilaudid, would present over time during this stay. It turned out to be a nightmare.
Twenty days or so into the visit, Annie started getting delusional. So many things were becoming a conspiracy theory. It was upsetting me to have to keep saying to her, Annie that’s just not true. It got to the point where I could actually see the confusion in her eyes as she searched for answers. Eventually, when I saw the confusion I simply went with the flow. I acknowledged her feelings in a way that didn’t fix a blame anywhere. I was starting to suspect it was the Dilaudid, as there simply was no other explanation. I asked one of the hospital doctors to switch her over to morphine, as I knew she handled that very well. He said no, she’ll be in too much pain. So I told him what had been going on for awhile now, and he said, I’d rather be delusional than in pain. I disagreed, telling him that Annie was now locked in a world where no wants to go. I really felt bad for her.
I’m going to share three short stories that surfaced when Annie was getting near the levels of what I thought to be an overdose. This is something I have to share. As a caregiver under some very difficult situations, one needs to know these things. If you see any delusions coming out or conspiracy theories developing, think about narcotic induced problems. And get your patient or loved one some help.
It was in the early afternoon, and I was sitting in my recliner reading the sports page while Annie was resting. It was not long before I heard the voice that only a husband can recognize. I knew I was in trouble, but had no idea why.
In her quiet stern little voice she said, “Bob, would you come over here for a moment.”
I said, yes dear, what do you need.
She asked, “Are you stupid.”
I just stared at her and said, “I don’t think so.”
“How much are we paying for this apartment.”
I tried to explain to her that this was not an apartment by telling her to look around at all the equipment and the IV’s in her arms. After pointing a few things out to her, I started recognizing the confusion in her eyes and changed my thought process. When she got confused, I’d learned over the course of the illness to go with the flow, as I didn’t want her to feel that way.
So I replied, probably two thousand dollars or more a day.
“Well then you must be stupid.” She asked me to walk over and look outside our windows, and tell her what I see.
As I scanned the area, I wasn’t really paying attention, as after several weeks in the hospital, I knew what was out there, so I told her. “I see tall buildings, cars and many people.”
Her reply was, “exactly.” For that kind of money, there should be a beach, or at least a swimming pool!
I really couldn’t argue that point! So I decided to let her take charge, by asking her what she’d like for me to do?
She indicated that she wanted an apartment across the hallway. She told me that “she kept hearing people over there and they were having fun.” (That was the nurses’ station)
So I asked her if she wanted me to go to the office and get our apartment changed.
She was shaking her head up and down, meaning, yes I do.
She weighed about eighty-five pounds, could barely move, but she wanted to take charge of her life. I admired her for that.
I left, went to the nurse’s station, found her nurse, explained the situation to her and she started laughing. I said “it’s not funny, you’re not living with her.”
She said “okay, go back to the room and I’ll be down in a minute with her anxiety meds.”
I told her I wasn’t going anywhere until Annie had her medication, which seemed to make her laugh even more.
She then went to the closet, got the medication and went down and gave it to Annie.
When I went back to the room she was asleep. Thank heaven! I knew when she woke, she wouldn’t remember the conversation.
This type of event happened often, and sometimes the situation could become very unstable as Annie would get very delusional, and difficult to deal with. One morning around 3:00A.M., I woke to some noise, and as I looked over towards her bed, I saw her standing by the bed dusting a table. She had climbed over the bed rail, IV tubes and all.
I said “Annie! What are you doing?”
She replied, “I’m just having a little tidy up.”
I got up, stood by her, and in a couple of minutes she was satisfied that the table with all the medical stuff on it was clean. So I lowered the bed rail and helped her back in bed. It got a little crazy at times, and she definitely kept me on my toes. But, that’s the way it was.
On a different occasion, a few days later, she was getting ready for high risk surgery. I was worried, so I asked her if I could sleep beside her tonight in her hospital bed.
She said “I’d like that.”
It was around 2:00A.M., when I heard her screams.
She was yelling, “Bob, Bob!”
I started saying, “Annie it’s okay, I’m right here!”
She started yelling and flailing herself around saying, “You’re not Bob!”
From that point on things got really bad! She started hitting me on the head in rapid motion, with her little hands and toothpick arms. I found myself trying to figure out what to do, without hurting her. She had two IV’s going and was slowly working herself off the bed, despite my best efforts to control her. I couldn’t do much of anything, as this event developed very quickly and was progressing in intensity, very rapidly.
Fortunately, A nurse heard her yelling and came running in, took one look at us and said, “I’m going to get help!”
What seemed like an eternity was getting ready to settle down, as I heard the footsteps of the only nurse that ever intimidated me. She was on her way, and going to take control of the situation. She walked in, put her hands under Annie’s arms, picked her up, and laid her on the bed. She held her there while the other nurse administered her anxiety medication. Annie fell asleep almost immediately.
I’ll tell you this! I didn’t get back in that bed.
Annie was fine, somehow she didn’t get hurt, and when she woke up, it was as if it hadn’t happened.
After the third event, when the nurses had to intervene, they took my wild stories a bit more serious. They sent her infectious disease control doctor to her room the night after the last event. Just like always, he was talking to her and she was making me look like a foolish man. He was convinced that she was fine, until he started to leave the room and she called him back to her bedside. She made him lean over so she could whisper. She started telling him that there was a conspiracy going on in the hospital against her. In her mind a nurse was taking a petition around the ward getting other nurses to sign it, so she could be placed on the nut ward. He handled that so well. He started laughing and told her no one was out to get her, and that he would keep his eye open for any problems. Guess what! Within the hour Annie was mainlining morphine and no more Dilaudid.
I called her sister Lesley in LA the next morning and told her what had been going on. She told me that on her side of the family there was a history to being allergic to that drug. I guess the buildup of the drug over time almost caused a catastrophic event. We were very fortunate.
I don’t know if they still mainline narcotics in the hospital or not. But they did thru 2010.
My sweet ‘Little Annie’
As I found out rather coldly, caregiver duties don’t come with instructions, and neither does cancer. If you don’t know what to expect, it can be a very cold world out there, but, with some unique surprises too. Such as this blog I wrote from my journal notes. On those occasions, this is how it was. I did many things for Annie as her caregiver, but besides loving her, I did my best to promote laughter and raise her spirits.
Living In the world of a nasty blood cancer, multiple myeloma, Annie developed a gift that over time allowed her to go to a place where she was safe. It was a world free from all the pain, suffering, chaos, and fear of the unknown. Sometimes when she was worried or stressed, she would just click over and display the mannerisms and voice of a child. She was playful, she was fun, and for that moment in time, unaware of the unchallenged danger lurking within her body.
For quite awhile I didn’t understand what was going on. When I spoke to the doctors about Annie’s transformation to child like ways, they kind of blew me off. They said it was most likely caused by the high doses of morphine she was on. I didn’t force the issue, as I really didn’t know what was going on, but I really didn’t care what anyone else thought. I simply let her delight in the innocence of a child, and in doing so, got to share in her wonderful gift–and how wonderful is that? Being able to escape from the fear and darkness hanging over you, to a wonderland where dreams are made, and free of cancer. Priceless!
I named her “Little Annie.”
In the second month of her cancer she was confined to her hospital bed, due to surgery to heal some broken bones. She was not supposed to get out of the bed. One afternoon I thought she was asleep, so I took the time to go to the dining room, set at the table and pay some bills. While I was sitting at the table, lost in the world every caregiver probably has to deal with–how to make ends meet, she sneaked up behind me, and as she put her hands around the back of my neck, she said in a childlike voice, “Boo.” I almost jumped out of my chair. I started to get cross with her, because she wasn’t supposed to get out of bed, well sort of, it was mainly out of embarrassment, until I saw her face and heard her beautiful little laugh. That was “Little Annie,” just being naughty and having a little fun.
One evening, she was laying in her hospital bed relaxing. I was setting a few feet away on the couch and we were simply making small talk. As I always did, I asked her if she would stay in bed while I went upstairs and took a shower. She said she would, and asked me if I would please bring her a pencil and some paper. So I did! I’d just got inside the bathroom, took my tee shirt off, when I heard this sweet little voice that I immediately recognized as “Little Annie.” She wanted to play and I took the bait! She was calling out, “Boooobbbbbby, I dropped my pen—-cil.” So with an elevated voice, I said I’ll be right down and went down and retrieved her pencil for her. She thanked me and I went back upstairs. I’d just got my pants off when I heard the exact same words, “Boooobbbbby, I dropped my pen—cil again.” So I ran downstairs again, this time in my underwear, and gave her the pencil. She was looking at me with smiling eyes and laughing, which made me realize what she was up too. I said to her, “are you trying to get me naked?” She started laughing harder, so I turned around, shot her the moon, then listen to her laughter as I once again climbed the stairs. What a precious few moments.
A bit later on in her journey, I was sitting at the dining room table with her when she suddenly looked at me and said, Dr. Moore just called me. “He told me I was doing good and getting better.” It shocked me as the voice was that of a child again. I just stared at her and I guess she saw the curious look in my eyes, then she said, “he didn’t call me, did he.” I said “nope!” She said, “I’m lying aren’t I.” I said “yes!” And she just came out with beautiful, child like laughter. I was totally blown away. “Little Annie” was in true form for her childlike ways. Telling “Little white lies.” What a blessing she was.
Here’s the difference between “Little Annie” and my wife Annie. Immediately after that short but beautiful exchange, she looked me straight in the eyes and asked me if I’d paid the mortgage this month. When I told her yes, she said, “are you sure.” I said “yes.” Her response was, “show me the checkbook.” She was still trying to be just a bit assertive. Here’s the thing, Annie was always in charge of bill paying in our family. “Little Annie” like most kids didn’t give a darn about the bills, but Annie did, even though she knew the odds of her surviving her cancer were slim to none.
I really loved Annie and from the day I met “Little Annie,” I fell in love with her too. She was so precious and innocent, and tucked away in a world of make believe where everything was good and there was no evil.
Over the last few months of Annie’s life, “Little Annie” came out more and more as her illness progressed. The sicker she got, the more she tried to escape to her pretend world. About ten days before she died, I brought her home from the hospital–she was really sick. That evening after I got her home a hospice nurse came over, and told us what she could do, would do, and couldn’t do. While she was talking Annie was getting a bit anxious, upset and started going to her little safe place. A short time later the nurse left, and I put Annie in her wheelchair and pushed her to the dining room table and poured her a cup of coffee. When I sat down “Little Annie” popped right out and said, “Bobby, if I take my medicine I’ll get better, won’t I.” “Won’t I Bobby.” What the hell could I say to that? My words were simple, “That’s the plan Annie.” I really had to fight back the tears, her statement was that of an innocent child, who was going to die from a cancer through no fault of her own.
A few days later was Halloween night and three of the young grand kids were coming over. This was two days before she died, and she was really rocking it. She was in full “Little Annie” form. I had given her three large boxes of gumballs which she hid under her pillow on her hospital bed. When the kids came in the room in costume, she pulled the gumballs out with excitement and laughter, and it truly was one of those “Look what I got for you moments.” At that time, Annie was but a child.
Two days later I lost Annie, and of course “Little Annie” too.
Annie’s beautiful online Memorial link: Over 63,000 visitors.
Miracle or coincidence?
This is part 2 of What has God got to do with it? You can read part 1 here.
15 August, 2008
The following statement from Dr. Moore Sr., Annie’s Oncologist, was made on the fifth day of her hospital stay. At the time, he was a senior member of the Leukemia & Lymphoma Society‘s National Board of Directors, had previously been a scientist, and was in his 39th year of practice. He was a blood cancer specialist and when he talked, folks listened. The statement speaks to the precarious balancing act that was going on between life and death. Annie was on the edge, and no one quite knew which way she was going to fall.
“Bob, we have to make our stand now. We are running out of time and if we don’t get those platelets up soon, Ann is going to start bleeding. She will have a brain hemorrhage or start bleeding from her nose, eyes, ears, stomach, and anywhere else she can bleed. We will not be able to stop it.”
He explained that with her bone marrow being so compromised with the myeloma, her platelets were not going to come up. The only way to stop the myeloma was for the chemotherapy to start killing the cancer. Then, even with the chemotherapy, we should start seeing a slow gradual platelet rise. This statement speaks to why Annie was not in the ICU. If she started bleeding, she would not survive.
Note: Platelets are one’s blood clotting mechanism. Normal platelets range from 140,000 to 400,000. Annie’s platelets were stuck between 1 and 5 thousand. Critical low! Example: A few days after Annie entered the hospital she had a stroke. It’s almost impossible to survive a stroke with platelets as low as Annie’s. Reason being–once the bleeding starts there is not enough platelets to stop it. That had the doctors talking–but, even before the events of this day, Annie was known throughout the cancer community as their little miracle girl. Somehow, some way, she kept beating back death.
As a caregiver, we’re sometimes just going with the flow. We don’t know from one minute to another what to expect when dealing with a critical and terminally ill cancer patient. Things can, and often do happen beyond the imagination of many. In other words, we have no control over what’s going on. We are simply being pulled along for the ride at that moment in time. We have no idea where we’re going or where we’ll end up. And simply put, fear of the unknown locks into our emotions and before we know it, we are on the emotional roller coaster ride of our lives.
Full of painful highs and lows
Annie was a lifelong Atheist. She didn’t believe in God, and would forcefully shut down any conversation going in that direction. Knowing how she felt about God, when she initially received her very short prognosis, I never even considered bringing in a pastor. The last thing I wanted to do was upset her while she was fighting such a difficult battle.
The stage has now been set for an amazing story whether you are a believer or not. I’ve tried so many times to understand what happened that night, but I always end up back in the same place—I’m not dying and therefore can’t possibly understand what goes on in the mind of a terminally ill patient with a death sentence. You just can’t put yourself in their shoes. But I know this, when Annie came out of that coma, she told me it was very dark and she felt a deep sense of loneliness and never wanted to go back there again.
The Spiritual Awakening
It’s now 10:00 P.M., and Annie has just been rolled into her room on the cancer ward. It’s been a very long day for her, she had her last radiation appointment and many medical tests and exams during the day. She probably didn’t even know what was happening to her as she was in and out of consciousness most of the day. When she was placed in her room, the word the nurses used was the dreaded “Coma” word. I hated that word!
While Melissa and I were waiting out in the hallway, we were both very tearful, and as we discussed the day’s events our attention became focused on a figure at the end of the west hallway. At the end of the hallway, where it intersects with the north and south hallways, we both saw this big-framed nurse go walking by heading south. She stopped, looked down the hallway at us, then kept on going.
I said to Melissa, “Did you see that funny-looking hat she had on?” It was like the old-fashioned 1950s nurses’ hats.
Melissa looked at me puzzled and said, “I did!”
About that time, out of the corner of my eye, I saw her coming our way. As I shoved Melissa into Annie’s room, I was saying, “Don’t look now, but she’s coming our way.” She was a short, stocky, older looking lady and I guess the thought of her being Annie’s nurse was worrisome to me.
As you walk into Annie’s room, which was facing north, on your immediate right was a large bathroom. Once you move past the bathroom, you’re in her room, which was about the size of a small bedroom. Annie’s bed was against the north side bathroom wall, so she couldn’t be seen from the outside of her room.
Melissa and I were standing about five or six feet from her bed and facing her. There were a couple of people standing in the doorway blocking entry to the room, but I could see the nurse with the old-fashioned hat standing behind them trying to look over their shoulders.
All of a sudden, she just pushed her way into the room and moved herself over to Annie’s bed. At that time Annie was unconscious. She put her hands on Annie’s cheeks and said, “God loves you so much, you’re such a beautiful lady.” She said that a few times, repeating herself. That was a jaw-dropping moment for Melissa and I. She then said a long and, what I felt was a very powerful, prayer. She stayed by Annie’s bedside for a while, quietly talking to her. I don’t know what she was saying, but I’m sure it was spiritual. Just watching the delicate way she touched Annie gave me chills.
A few minutes later Annie’s nurse came walking over to Melissa and me. She told us they’d done all they could for now and that the blood would be arriving soon, so they could start the transfusions. She told us Annie needed at least three or four units of blood.
I asked the nurse how she was doing and she replied, “We don’t have any expectations either way. She’s a very sick lady, but hanging on.” It was all about the numbers; the blood counts had to come up soon, as Annie was compromised in many ways at the moment.
As the nurse walked away, the nurse that was praying for Annie walked from the bed and over to us. The first words out of her mouth were, “You must be the family.” I told her we were and that my name was Bob, and Melissa was our daughter.
She identified herself as Beverly, and told us that “on her way to work tonight she had a premonition from God that she was going to meet someone very beautiful and special.” She looked straight into my eyes and said, “I believe I just met that person.” She then put her right hand on my left shoulder and her left hand on Melissa’s right shoulder squeezing rather tightly, but affectionately. She told us we’re going to get through this night, as she didn’t believe God would send her to visit someone that was going to die. She asked me what her name was, and we told her in unison, “Annie.” She then remarked, “I believe she needs some work.” Beverly indicated that this wasn’t her area of responsibility, but when she got through with her shift, she’d come back and check on Annie.
As she walked out of Annie’s room, Melissa put her arms around me and said, “Daddy, we just met an angel.”
I felt as if something very special had just happened, and I knew instinctively that overtime this night might play a significant role in Annie’s life; or was it my emotions wanting me to believe there was some sort of intervention playing a bigger role here. I must admit, I did find Beverly’s words to Annie very comforting. But it left me wondering if Annie was aware of her presence, or even heard her gifted words.
By the time Annie woke up, it was mid morning on the 17th, and she’d received 5 units of blood and 5 units of platelets. Over the next 2 weeks while in the hospital she had many more transfusions.
The afternoon of the 17th, Beverly stopped by with a little gift for Annie and they had their first formal meeting. Beverly walked over to her bed, held her hand, and introduced herself. I could tell by the expression on Annie’s face that she felt the love. She clung to Beverly’s hand with both of hers as they talked for a while. Then out of nowhere, Beverly asked Annie if she’d mind if she prayed for her.
Annie was looking up at Beverly when she said, “I don’t mind.”
I watched Annie close her little eyes, and we all bowed our heads. We then heard a prayer, so wonderful, loving, and peaceful it was probably one of the defining moment in Annie’s journey.
From that day on, anytime Annie knew Beverly was coming around, she’d get excited. Annie loved having Beverly in her presence, she made her feel safe.
In my opinion, and from what some of the nurses told me, this sort of event happens much more than we think. As a caregiver, we must always have the best interest of the patient or loved one in mind. And if, as was the case with Annie, the loved one has a spiritual awakening, just go with the flow. If you don’t know what to do or how to help, call on the clergy for help. We must not use our beliefs, to deny someone the chance to pursue what they may be seeing as an opportunity that we can’t possibly understand. Annie was an atheist in the truest form, so what happened? Apparently she saw something in the darkness that really upset her. She did not want to go back there. On the other hand there was Beverly, she represented the light. In Annie’s compromised position, that’s was probably a no brainer for her. And I believe, at that point Annie was exploring her options as she saw them.
The gift Beverly gave Annie was a little white box with a tiny mushroom bird and miniature cross inside.
During the hospital stay, Melissa got a very tiny zip lock bag and put the bird and the little cross inside of it. She pinned the bag and contents to the wall beside Annie’s hospital bed where she could see them when she was worried. The bird is significant, in that a song was written about it in the 1950s and sang by a famous gospel singer, Mahalia Jackson. It goes like this; “I sing because I’m happy, I sing because I’m free, his eye is on the little ole sparrow, so I know he’s watching me.”
One afternoon, Melissa walked over to the bed to check on her momma, whom she thought was sleeping. She noticed tears running down her face and said, “Momma, are you crying.”
Annie turned her head over to face Melissa and said, “Mel, I don’t know how to pray.” Sad, but why would she know how to pray. Once the story was relayed to Beverly, she made a special trip up to the hospital and took care of Annie’s spiritual need. I would like to have helped her but I wasn’t sure if there was a right or wrong way to pray. Anyway, I felt the task at hand was too important to be handled by anyone other than Beverly.
I’ll close this blog with these final words. Annie was in the hospital for 2 weeks. When she got out we still had to make a trip or two a week to the infusion center for platelets or blood. That went on for about a month.
How did Beverly know it was Annie she was looking for?
She said that when she was looking down the hallway she saw a bed surrounded by people being pushed into a room. Beverly said the bed had a beautiful “golden ring” around it. Based on her premonition, and the fact that the cancer ward had forth to sixty patients on it, how else could she have known. Melissa and I, along with two nurses were standing there and we didn’t see the gold ring. But I guess we weren’t supposed to.
Beverly had been a nurse for fifty years. The last thirty of those years she was an oncology nurse. She retired before Annie passed, and became an integral part of Annie and this families lives. With her came everything good.
This two week period was very tough on Annie, me and Melissa for many reasons. It was difficult as Annie’s husband/caregiver to find words to promote stability in such fluid and anxious times. Yes, when I took Annie home I felt like, just maybe we witnessed some sort of a miracle, as my mind drifted to–or was it just another coincidence. I was just happy we were home.
Naive, would be a good word to describe what we just went through as a family. I really didn’t think things could get any worse. But they can and they do. And I’m not talking about dying, I’m talking about survival and the lengths and depths two people in love will go to, and through, battling this cancer, when sometimes the only weapon they have to fight with is their love for each other.
One of the most difficult and complex things one will ever do in life is be a caregiver for a terminally ill loved one. In my case, it was never a question of if Annie was going to die, but when. As a caregiver, the burden that we carry is almost too much to bear at times. Annie and I won every battle we fought, and there were many. But, in the end we lost the war. It’s heartbreaking having to watch a woman you adore, so independent and strong be ravaged by a savage cancer. That quickly pulls life into perspective, and we soon learn to appreciate and cherish every day we have with our loved one, regardless of how bad the day is.
Always remember, a good day for your loved one may be a bad day for you. Your day may start out with you carrying around a heart filled with pain as the end draws nearer, and your loved one is simply happy because their still alive. They can still see, they can touch, they can smell, and yes they can still love. So we adjust our mood to theirs, and give them what they deserve and need. A good day! As caregivers, even when staring such adversity in the face, we can’t deny them that. In my case I had the rest of my life to heal, while she was losing hers. And once the final bell tolls, the true grief begin. The rest of this story was from a journal I wrote 2 years after Annie died, and was not only my take on grief, but part of the healing process.
What is grief?
In my opinion, grief is a part of our body’s self-defense mechanism that allows potentially harmful feelings of sorrow to leave our body. Anytime our body is overwhelmed with sorrow grief gives us an emotional release, thus expressing our feelings, most often through our tears. In many cases we stay in touch with our loved one by looking at pictures, reading old notes, remembering the good times, sharing in our laughter, playing our favorite music, and whatever else we shared and enjoyed in life together.
My grief was driven by the love I shared with my wife Annie. And I do believe, the more we love, the more we lose, which equals a much longer and more difficult journey through our grief. Some folks never get over their grief, but thanks to our body’s resilience, we learn to get through it. In theory, the loss of a loved one can create a darkness that penetrates our soul, which becomes a measuring stick for our grief. As the darkness slowly departs from our body a wonderful thing happens. Our grief starts to dissipate, and we can feel ourselves stepping out into the light. What I found amazing and unexpected was I had a strong sense that Annie stepped out into the light with me. So I realized it wasn’t Annie that was keeping me in the darkness, it was me. We all know our loved ones would certainly not want us to be sad, so why are we. Simply put, we loved and we lost. But in the end, although things can never be the same, we get better and once again find our purpose in life.
Breaking down grief
It’s important to understand when you first started to grieve. The reason is simple. I started my journey with grief the day Annie received her diagnosis/prognosis. I was told privately that Annie would not survive her cancer. So it follows that at some point prior to a loved one’s death, depending on the circumstances of the death (how quickly the death occurred), grief will be firmly entrenched in your emotions and actions at the end of the journey.
Can we control our grief?
Under certain circumstances we can, and in my case, I had to. Annie was terminally ill, and grieving in her own way. So it was important for her that I stuff my grief while she was grieving and fighting cancer. It wasn’t easy, but it came with the understanding that our journey was about her, and not me.
Here’s a tip: If you need a good emotional release as I did at times, just find a quiet place away from your loved one, and let your emotions come flooding out. It won’t take long, and when you rejoin your loved one you’ll be more composed, focused and able to help out.
As Annie’s caregiver husband, I had a ringside seat to everything that was going on. I instinctively knew that if I showed signs of weakness through my grief, it would allow her to become insecure, which is an emotion or fear that she didn’t need while fighting her battle. And it would make her weaker in the long run. So here’s the answer to the question about how long you’ve been grieving. This is what happened to me. For the most part, but not always, I stuffed my grief for 30 months while she was fighting her disease. When she died, the old theory that I’d been grieving for 30 months, so my grief should be light, went sailing out the window. It was more like an explosion of emotions, that my mind couldn’t digest, but there was nowhere else for them to go. I can tell you, that’s not a good place to be. The pain was immense and it felt like the life was being sucked out of me. I just kept saying over and over, “I want her back.” And that was just the beginning of my 24 month nightmare. Yes, that’s how long it took for me to feel half way sane again. Having said that, I do know that everyone grieves differently and that there is no time limit on grief.
Grief & mind games
In the beginning, grief is like a mind game and will literally make you reflect back to things or events that you’d rather not think about. It seemed to me that the more traumatic the event was the more I focused on it. And that’s something I tried to avoid as much as possible, but grief is strong and it will fight back. Grief is so deceptive that it will try to convince you of things or events that you know were not true and perhaps didn’t even happen. What I’m saying is, grief will disrupt your thought process, and it can be a real battle at times to maintain control.
What I came to understand while fighting grief
It is very deceptive, but less complicated when we start paying attention to our feelings. It’s truly a state of being and what you are feeling in grief is quite simply your way of dealing with your memories. I found that sometimes my memories didn’t always set well with family and friends, as they just wanted me to move on. And that’s okay, but remember, they are your memories and no one can take them from you. Also, it’s important to understand that most family and friends have no personal idea how you’re feeling, as they are not you. Stay the course with your grief, and move forward at your own pace. In the end you’ll be glad you did. Healing takes time, and can’t be rushed. If you need help with your grief, I can be contacted via email at firstname.lastname@example.org I will help you through your grief if need be.
What would you do if you woke your wife up one morning to get her washed and dressed for the day–“And she was blind.”
Welcome to my world! Annie was fighting a nightmarish battle with an aggressive cancer that was not only taking her down, but beating me down too. We were struggling on a daily basis just to get through each day. And if anything could go wrong, it did!
Part One Of–“What Has God Got To Do With It” is full of love and takes care giving on my part to a whole new level. I was so upset–making decisions as fast as I could and without any reliable understanding of what I was even dealing with. That was a tough time for the both of us, but our only choice was to keep moving forward…What else could we do?
August 15, 2008
Annie and I had been moving along, struggling through each day. Today the perfect storm seemed to hit. Events were about to unfold, that would leave Dr. Moore Sr. scratching his head in dismay, and it appeared the tide was starting to turn in a way, that I’d never have thought possible.
I rolled off the sofa around 7:00 A.M., woke up Annie, put the coffee on, then went to her closet and picked out a couple of outfits for her to choose from.
The past few days she’d been feeling worse than normal, but with no fever, congestion, or obvious symptoms, I assumed it was from all the radiation and chemotherapy. This was to be her tenth and last day of radiation.
I walked over toward her hospital bed, and from a distance of about 10 feet away, I held the two outfits up and asked her which one she would like to wear today.
She looked my way, staring at me, but not saying a word.
I said, “Annie, are you okay?”
She simply said, “I can’t see them.”
I responded, “What do you mean you can’t see them?”
She said it once again. “I can’t see them.”
As I walked over to the bed, I could feel the anxiety flowing through my veins.
I asked her if she could see them now, and she said, “No.”
So I laid each outfit out across her lap and let her touch them, explaining what they were.
She said “Bobby I can make out the color, but I’m not sure what they are.”
I don’t remember the top, but she picked her yellow track pants out to wear, which were nice and very comfortable.
That was one of the few times over the thirty months she didn’t have a morning wash. I got her dressed and into the wheelchair. By then, it was around 8:00 A.M. I pushed her to the dining room table, made her some toast and placed it on a colorful plate thinking she’d be able to see it better. I set the toast down in front of her with a glass of milk, and while making my toast, she asked me for her milk.
I said “Annie, it’s right in front of you.”
Her little hand was moving around trying to locate the milk, but she couldn’t see it, or find it. Alarm bells were going off everywhere in my head, but I had no idea what was going on.
I decided that after breakfast, we’d go to her appointment early as her radiology/oncologist was Dr. Rine. He had an extensive knowledge of blood cancer, and my thoughts were he’d know what to do.
At approximately 8:45 A.M. our doorbell rang. It was a nurse from the home health agency making a well-being check on Annie. She’d been over a few times before.
After she walked through the door, she walked over to Annie at the kitchen table saying “Hi Annie.” Annie sat in her chair quietly, motionless, and didn’t make any attempt to communicate with the nurse. The nurse sat down in one of the dining room chairs to the left and beside Annie.
She said to Annie, “Do you remember me?”
Annie replied: “No.”
I spoke up telling the nurse that she probably can’t see your face well enough to recognize you.
The nurse asked me what I meant, so I told her about the clothes and milk.
The nurse and I were having a discussion about her condition when Annie abruptly said, “I don’t want to go to the hospital!”
The nurse told her she probably should go get checked.
Annie looked her way saying, “But I don’t want to go.”
For whatever reason, the nurse went against her own better judgment and said to me, “Why not give it until Monday, and see how she’s doing then?”
I was shocked at her request, and said something to the effect; she can’t even see you, surely you see the seriousness of this event, knowing her illness.
The nurse then asked Annie if she would go to the hospital for Bobby.
I was very vocal when I said, “For me, this is not about me! Annie is very ill.”
At that point I basically dismissed her saying, “I will take care of Annie.” This was a Friday, and knowing how fast blood counts can drop, I was concerned that it was a blood issue, requiring immediate intervention. I felt bad for dismissing the nurse, but she had to know in this case Annie’s wants were secondary to her needs.
Around 9:15 A.M., we left to go get her last radiation therapy. Annie was pretty limp, and weaving in and out of consciousness, but with some difficulty, she still responded to my commands. It was tough getting her in and out of the vehicle as we were still dealing with the diseased bones. With her head hanging limp against her right shoulder area, I had to hold her head up with my left hand and push the wheelchair with my right hand. That worked okay inside the hospital with the hard floors, but outside I didn’t have the strength to do that on rough surfaces, so I used my left waist line as my left hand. This was just another one of those sad realities of being a caregiver.
It seemed, as I crept further into the world of cancer, I was literally being schooled on just how cold and cruel the world of cancer can be.
As Annie’s caregiver, I didn’t expect much help from others, and as a rule didn’t ask for it. But I was learning just how important of a role caregiver’s play in caring for cancer patients. In Annie’s case, I was now her eyes, ears, and voice to the world. I was aware that I had made some mistakes over the past two months. However, my role as her caregiver would not be defined by a mistake; but it could be defined by lack of trying, or caring for Annie. I wasn’t going to let that happen.
When we got inside the radiology clinic, a nurse took one look at Annie and moved her straight back to the treatment area. When she returned, she said they’d made Annie comfortable, and Dr. Rine would call me back to the treatment area when he was done.
I was sitting in a large waiting room, staring out a wall of windows at people coming and going. I saw one couple holding hands and loving on each other. At that moment, I felt the first signs of grief coming on. At this point, I knew with certainty our lives were going to change forever. All I could do now, was to care for her, and give her as much love as humanly possible. While my mind was wandering, I was relieved to hear the nurses voice and then see her arm motioning me to come over, so she could escort me back to the treatment area.
She took me through a couple of large doors, into a room where Annie was waiting, bundled up with a blanket, her head hanging limp, and sitting in her wheelchair. Dr. Rine was standing a bit to her left, arms folded, looking down, and staring at her. He was a tall man and had a strong presence about him.
My words were quivering when I looked at him and said, “I think she needs some blood.”
He answered back, “I think it’s a whole lot more than that.”
I could see the concern in his eyes, and hear it in his voice. He asked me if I’d like him to call the laboratory and get her blood drawn for analysis. I told him we had a 11:15 A.M appointment at the cancer center for laboratory work and I was going to go ahead and take her there.
We left radiology and drove to the cancer center, which was only a couple of minutes away. When we got there, she was basically non-responsive. I struggled, but got her out of the vehicle, into the wheelchair and wheeled her into the cancer center, where we took the elevator to the third floor.
Shortly after I checked her in, we were directed back to the treatment area. It’s a very large area and has many rooms that will hold two or three folks at a time, while taking chemotherapy or other treatments. Annie was placed in a room by herself, where she was immediately surrounded by nurses.
As luck would have it, Dr. Moore Sr. was off that day. A group of nurses looked at Annie and told me to take her to the emergency room immediately.
I said “no!” I wanted them to draw her blood for a CBC, and show me her blood counts as she was at her scheduled appointment. My concern was, that if her white count was down, being around a bunch of sick patients was very dangerous for her. It was only two weeks ago when her white count was under one, that she essentially had no immunity to germs. It can take a long time to see a doctor in the emergency room and it’s always full of people with various illnesses.
One of the treatment nurses walked down the hallway and asked Dr. Moore Sr.’s nurse to come visit with me.
When nurse Jenny arrived, she stooped down beside Annie’s wheelchair and said, “Annie, do you know who this is?”
Annie said in a low whispered voice, “Sandra, Sandra,” who’s one of Annie’s sister’s in England.
Nurse Jenny said to me, “She doesn’t know who I am.”
I responded by saying, “She doesn’t know where she is either.”
Jenny looked up at me with puzzled eyes, then stood up and started walking down the hallway to placed a call to Dr. Moore Sr., who immediately ordered a CBC on Annie.
Her blood was drawn a few minutes later, and having an independent lab on the hallway, we’d see the results within fifteen minutes.
In the hospital or emergency room even under extreme conditions, it can take over an hour to get the results back.
When nurse Jenny received the results she took immediate action and called Dr. Moore Sr., informing him that her blood counts were terribly low. Her HGB was 5, while the normal range is 12 to 16. A number that low, would indicate the vital organs were probably not getting enough oxygen to sustain them over a long period of time. Her platelets, blood-clotting mechanism were at 2,000, whereas the normal range is 150,000 to 450,000. She was at high risk of bleeding or having a brain hemorrhage. Her white count was very low too, which elevated her risk of infection. Her potassium and magnesium levels were well below normal. She was also extremely dehydrated, which is an emergency and can become life threatening over a short period of time. Annie was in trouble and we all knew it.
Once I heard the results, the words I heard this morning from the Home Healthcare nurse could not be erased. I couldn’t even imagine the consequences of leaving her in that condition over the weekend. I couldn’t have lived with myself if I had kept her home and something happened to her. I sensed she was very ill, but I had no idea it was this bad.
After Dr. Moore Sr. received the results, he had the nurses scrambling. They got her on a bed and attempted to start IV fluids. The first nurse tried to start the IV, but the minute she put the needle in, the vein collapsed. She tried a couple of times, but the veins wouldn’t hold. The next nurse that tried was unsuccessful too. They called another nurse over, who was said to be one of the best when dealing with difficult IVs, and she was successful. Those three nurses were highly skilled nurses and starting IVs is part of their daily routine. Sometimes, when a person is badly dehydrated, this is what happens. Veins can collapse as fast as the needle goes in and once the magic line of being too dehydrated is crossed, it can be very challenging, bringing a person back.
I learned something that morning, something I shall never forget. You cannot drink your way out of dehydration and must have IV fluids. Without the immediate intervention Annie received, we may have crossed the threshold of no return within the next few hours. The consequences could easily have been fatal.
Just after the nurse got the IV started, Melissa showed up. I’d called and told her what was going on, while requesting her presence as soon as possible. After we spoke for a few minutes, I dismissed myself and went outside the cancer center and sat on the lawn in front of a big oak tree. I called my friend Darrell, and cried like a baby. I always called him or his wife Jan, when I was struggling. By this time, it was afternoon and with all the anxiety I’d just been through, I guess I needed to have a good cry to release some of my emotions.
It’s very difficult watching someone you love continually living on the edge, especially when you don’t know which way they’re going to fall. My mind was on overload due to my limited understanding of the disease, and seeing the affects it was having on Annie. She had already lived past her prognosis and I knew her situation was bad. So the question, “Is this it,” was always on my mind. It was becoming apparent that cancer sets the scenes for many emotional traps. I was starting to understand how well I dealt with them would define my success or failure as her caregiver. And I truly believe, in my mind, failure was not an option.
Part Two Of–“What God Has To Do With It” will follow a few days after part one. And then you will see an event unfold that if I had not been there, I would never have believed it. Annie was a lifelong atheist.
Anytime you’re told by your family doctor that you’ve been set up with an oncologist for a consultation at the cancer center, the anxiety will probably race through your body in waves. This is how the consultation went for Annie and me. Keep in mind, no two consultations are exactly the same and the same cancer will normally behave differently in each individual. Note: Sadly, Annie lost two younger sisters, one month apart to cancer, 6 years prior to this consultation.
We got up this morning both feeling anxious and apprehensive. I remember trying to make conversation, but the mood was too awkward. The reality was setting in that we would soon be on our way to the cancer center. Looking back on Annie’s extensive health issues over the past year gave me an uncomfortable feeling. It was obvious she had some medical issues, that for whatever reason her general practitioner, and the specialists she’d been seeing could not diagnose. I’m sure we were both hoping for the best, but from the worried look on Annie’s face, I believe she was expecting the worst.
A short time later we arrived at the cancer center and checked in. We were placed in a waiting area that was large, seating thirty to forty people, and was relatively full. It didn’t take long for us to realize that we were surrounded with so much sadness. Annie pointed to a lady and said, “Look at her, bless her heart, she’s really struggling.”
Personally, at the moment I wasn’t concerned about the other patients in the room. But as my gaze shifted to the lady, I took a good look at her, and my emotions went through some changes. That’s when I realized we were on the outside looking in, and the thought that we might soon be on the inside looking out changed my views.
Annie was an extremely compassionate person, and I believe I was trying to look at the other patients through their eyes. I was starting to understand rather quickly, the folks in this room were all part of a larger family, and for the most part lived on hope.
Eventually, a nurse took us back the laboratory where Annie had her initial blood draw. After her blood was drawn, the nurse escorted us to one of the patient rooms, and checked Annie’s vital signs. She left the room telling us that Dr. Moore Sr. would be in soon. The room was small, about 10 by 12 feet. We were sitting along the North wall facing South. Annie and I both noticed the South wall was ornately decorated with large and small shadow boxes filled with different species of some of the world’s most beautiful butterflies. I couldn’t help but wonder if the butterflies weren’t peace, in the face of such adversity. For that short moment in time, I think the butterflies allowed us to communicate and escape to a part of our minds where there was no thought of cancer.
When Dr. Moore Sr. came in the room, his first words were, “Ann, have you been feeling sick lately? Have you had a cold or any fever?”
Annie replied that she hadn’t been feeling well, but she didn’t believe she was sick.
This short, stocky man, had a strangely curious look on his face as he walked by us towards his desk saying, “that is strange,” but really didn’t elaborate.
That’s when I asked the question, “Dr. Moore, have you ever seen blood like Annie’s?”
My heart sunk when he looked at me and replied; “I see it every day Bob, that’s what I do.”
Cancer was not mentioned as he needed to do a bone marrow biopsy to find the source of Annie’s illness. At that point, he opened the door and yelled out two words, “Bone marrow!”
Shortly after, a nurse came in pushing a stainless steel cart. It happened so quickly, I believe she was waiting outside our room for the call. The cart had a tray on top, with some strange looking instruments—a rather frightening sight. One of the instruments was long and narrow with threads on the end. That was to be used like a cork screw, to get inside the bone to the marrow. The nurse helped Annie onto the bed and laid her on her right side. They used sterile cloth to drape over her hip, leaving the target area open. They gave her a local anesthetic to numb the area. I positioned myself up near her upper body, put my right arm around her neck, and held one of her hands with my left hand, knowing it was going to be painful.
When Dr. Moore Sr. finished the procedure, my hand was numb from Annie’s squeezing. All I heard from her through that whole process, was a couple of times she said, “Ouch!”
The process took about half an hour. Before the doctor left the room, he looked at Annie and remarked, “Ann, I think Bob took this procedure worse than you did.”
I had tears running down my cheeks, and probably for the first time in my life, I felt her pain. It really pulled at my heartstrings watching her go through the procedure; and I suppose in the back of my mind I was very fearful of what they might find.
He told the nurse to clean her up and told us that we could expect the results in about seven days.
The ride home from the cancer center was very awkward. Our drive through suburban Wichita was a non event, but it was now difficult for both of us, not to notice the kids playing, couples walking hand in hand in happiness, while we were left wandering in the darkness.
We really didn’t know what to say to each other. Annie simply sat and stared out the window, her eyes gazing from one area to another, obviously deeply in thought. She had a strange calmness about her as if she’d resigned herself to the fact that she probably had some sort of cancer. As for me, I felt rather numb, but remained focused on driving through heavy traffic, and getting us home safely.
When we arrived home, Annie would normally get out of our vehicle, look at our beautiful two story home, all our trees, shrubs, and greenery, then give me instructions on the many jobs she had in mind for me to take care of. Not this time; her mood was solemn as she took a slow walk into our home.
As the sun started to set, it became apparent to me that our lives were changing. The unspoken words of Dr. Moore Sr., were driving our emotions. I didn’t know what the unspoken words were, but somehow I think Annie knew.
When we went to bed that night, as it had been over the past several months, her legs were hurting, so I gave her a leg massage. She fell asleep, not mentioning the day’s events. For whatever reason we didn’t speak of Annie’s first appointment, but once again, I think the unspoken words or Dr. Moore Sr. were locked in the forefront of our minds. What was he going to say?
The diagnosis: 3 days later
When we arrived at the cancer center they had a room reserved for us. It was the same room we were in on our previous appointment. We went in, sat in the same chairs, while the nurse took her vital signs.
Shortly thereafter, Dr. Moore Sr. came in, rolled a stool over and sat in front of Annie. I’ll never forget the look of dismay on her face when he gave her the diagnosis.
He told her she had multiple myeloma: it was terminal, metastatic, not curable, but treatable. He further stated that multiple myeloma has three stages, and that her cancer was in stage three, with her bone marrow being over eighty percent cancer.
I guess it’d be like someone offering you an apple when you were starving—eating eighty percent, then giving you the core.
While Annie was talking to Dr. Moore Sr., there was a knock on the door. When he opened the door, Nurse Lisa, a well dressed lady came walking in. Lisa was the nurse in charge of putting new patients on the clinical trials.
Lisa spoke to Dr. Moore Sr. about the requirements for the clinical trials, and some new changes coming out.
Dr. Moore Sr. seemed a bit agitated, when he asked her to go see if Ms. Harrison would qualify for the clinical trials.
Raising her arm and holding up what I believe was a copy of the current laboratory report, Lisa told the doctor that based on her HGB being so low, she would not qualify for the clinical trials.
Without hesitation and a strained look on his face, Dr. Moore Sr. said, “Well then I will transfuse her!”
Lisa simply nodded her head in acknowledgement of the doctors words, and left the room scampering down the hallway to her office.
After Lisa left the room, Dr. Moore Sr. explained to Annie’s that her best hope for survival would most likely come from the clinical trials, potentially using new drugs that weren’t on the market yet.
But it seemed, Dr. Moore Sr. was in a bit of a dilemma. Apparently he needed to start chemotherapy right away; but once he started giving Annie chemotherapy, she would no longer be eligible for the initial phase of the clinical trials. He also said that once placed on the clinical trials, most of the treatment for the disease is free.
After his short, but to the point conversation with Annie, he excused himself and left the room for a few minutes.
After he left the room, Annie and I just sat there quietly staring at the wall. I tried to reflect on what we’d been told, but other than the key points, I don’t remember much of anything that was said during the first half of the appointment. Annie appeared to be in shock, and I knew in her mind, her life was spiraling out of control. Her eyes looked so empty and sad as she stared straight ahead at the butterflies on the wall. As I stared at her emptiness, I wasn’t sure what to say to her, but knew I had to say something. So I got on my knees, put my hands on her cheeks, looked her in the eyes, and said, “I promise I will love you, take care of you, protect you, and won’t let anyone hurt you.” At that point she lowered her head down to mine, and we simply held each other and wept.
I was sitting beside her holding her hand, when Dr. Moore Sr. came back in the room. The first thing he did after looking at Annie and me, without saying a word, was walk over to his desk and get us a tissue. He then rolled his stool back over to us, and started revealing his strategy. We had just started talking when Lisa returned.
I got on my knees, put my hands on her cheeks, looked her in the eyes, and said, “I promise I will love you, take care of you, protect you, and won’t let anyone hurt you.”
Lisa told the doctor that the study had been shut down for two weeks; but when it reopens, she would be eligible.
He looked straight at Lisa, speaking with a very elevated voice, and hitting the table with his fist, he let these words fly; “I don’t have two weeks, I don’t even have two days!”
It was apparent from his frustration and tone in his voice, Annie’s fate had already been sealed. It wasn’t a matter of if she was going to survive; but, “How long was she going to survive?”
I have a copy of his progress notes: “I hope to get started by next week on treatment of this unfortunate patient.”
Note: On this day before we arrived at the cancer center I had a call from Dr. Moore Sr’s nurse Tracy while I was at my office. She informed me of just how grave Annie’s situation was and in fact, after spending two days looking at her medical records, Dr. Moore Sr. couldn’t understand why she was still alive. Hence his frustration was coming out in this appointment.
There is no pre-screening for blood cancer, so this event happens more often than we would like to think.
One person every three minutes is diagnosed with a blood cancer in the United States, and one person every ten minutes will die of a blood cancer.
By now, my previous writing gives a clear indication of the complexities of a nasty cancer, and speaks to the ebb and flows of emotions. At times I felt like I was caught in a tug of war between two different worlds–the world of pain and suffering, and the world of “Love.” While cancer was capable of ripping my heart out, my words remained the same–“I love you more.”
Dr. Moore Sr. explained to me that with Annie’s heavy tumor burden, broken bones, and lesions from multiple myeloma, she was going to be in considerable pain; and all the pain medication she was on was how multiple myeloma patients in Annie’s condition were treated.
He made it very clear to me that Annie had a very aggressive cancer, but hopefully over time the upcoming radiation treatments and the new chemotherapy would start destroying the tumors and relieve some of the pain. I think his thoughts were that if he could keep her around for a while, and get her on Revlimid, we still had a fighting chance for some sort of remission. Her treatments and pain control were going to be very aggressive, but they had to be.
I knew that over time her pain medication would build up in her body tissue with the potential consequences of a fatal overdose. For me it was a real balancing act, as excessive amounts of narcotics often lead to labored breathing and sometimes completely shut the body down.
Once again as her caregiver and husband, when asking for more pain medication, I had to be fully committed to her care. Pain control was paramount to my humanity, and this new level of care I was going to provide for Annie was all about love. When you really love someone it’s amazing what you can do when the chips are down. Annie was on all sorts of medications, with many different side effects, but I knew that if I paid attention I would detect any impending emergency and deal with it.
At the moment, everything surrounding her cancer always seemed to be difficult or offered many challenges. I was starting to get angry at how inhumane this disease really is, but I was not going to give into it. I was going to get stronger, more knowledgeable, and help her fight this wretched disease on a more level playing field.
Each day, Annie received her last doses of medicine at 12:30 A.M. She would have her generic medications, a Xanax, a sleeping pill, and her morphine. Sometimes in the night she might need an extra morphine, which meant I definitely couldn’t lie down as I had to be aware of her breathing at all times. I didn’t mind, as Annie wanted to live, and as long as she was willing to fight, so was I.
Once she had her nighttime medications, I knew if she was going to have problems, it would be during the first couple of hours. I would usually sanitize the kitchen during the wait as I had a good visual of her from there. On the nights I felt she was safe, I’d lay on the sofa and rest, which was usually around 2:30 A.M. On the nights that her breathing became labored, I would sit in the wheelchair beside her bed and stimulate her by talking to her and rubbing her head and neck. What that basically did was annoy her. Sometimes her pretty little eyes would come open, she’d look at me, and I knew what was coming. In her weak little voice she’d say, “Would you leave me alone? I’m trying to sleep.” Further, “Now look what you’ve done, you’ve woke me, and I won’t be able to go back to sleep.” Her predictable words always made me smile, knowing my mission was accomplished. We now had normal air movement again. Sometimes, I would do that on and off all night. That was such an important part of caring for her. If her labored breathing became too low over a period of time, her vital organs could become oxygen deprived and start shutting down, or her breathing would simply get too low, and eventually stop. With that much morphine, anything was possible. It was very worrisome for me at times, but the reward of getting to spend another day with her made it all worthwhile.
With our new and unique sleeping arrangement, when I laid down to rest at night, the last thing I saw before I fell asleep was Annie’s face as she slept silently on her hospital bed. On many occasions when I woke up in the morning I would just lay on the couch staring at her and loving her. Eventually she would awaken, look in my direction, and as her eyes came into focus with mine she’d give me a beautiful smile and say, “Hi babes.”
I always smiled back saying, “Hi sweetie.”
That greeting was replicated many times throughout our journey and created moments of tender love that made me wonder what I could do for her today to make her day just a little bit better.
Her cancer was bringing us together in a way that quite simply created a very new and spontaneous love. At this point we’d been married 37 years, and were now experiencing a love affair that would change our lives, creating a new meaning in our lives for the word “Love.” We always loved each other, but my feelings were that we were now on the verge of capturing something new, exciting, and very rare in the world of mortality: “The Perfect Love.”
Note: Annie was on 200 milligrams of morphine a day, but was still experiencing a considerable amount of pain. My orders were to stay ahead of the pain, which was becoming impossible. I called Dr. Moore Sr. and he prescribed a Fentanyl patch to help cover the breakthrough pain–which is pain that comes on despite aggressive pain control. This was very aggressive pain control, but we were fighting battles on many fronts. The aggressive cancer with numerous bone breakages, and pain were the most difficult.
It’s been four years since I lost Annie, and even today I crave her love, her touch, her laughter and beautiful smile–I Guess I Just Miss Annie. Please understand this–If you love someone today, try to love them more tomorrow. Life Happens.
I was always under the impression that we have control over our destiny. But, as I found out, that was just an illusion. Sometimes life throws us a curveball that freezes us in our tracks. No more dreams, or aspirations, just a cold, cold, world stealing away our innocence, replacing it with a total and compelling fear of the unknown. Cancer is evil, and it doesn’t give a damn about your love, feelings, pain and heartache, it’s just evil! And make no mistake, it’s not just after your loved one, it wants the house, the car, and is quite willing to suck the whole family down with it too. In the end it can’t do any more damage than we allow it to. Yes, it stole Annie from me, however, over time I learned to control the cancer and not let it control me or the care I gave Annie.
Cancer is evil, and it doesn’t give a damn about your love, feelings, pain and heartache, it’s just evil! And make no mistake, it’s not just after your loved one, it wants the house, the car, and is quite willing to suck the whole family down with it too.
Now that I’ve got that off my chest, I’d like to introduce you to a sweet story of the night we met. I’ve published a few blogs on Annie’s journey and they’ve been well received, so I think it’s time I introduced you to where our lives together began. I will be doing many, many, more blogs on Annie and me, her caregiver husband. And the dominating theme will be love, and the price we pay when all we have left is love, to get us through each day.
The Letter To Heaven:
Hi babe, it’s the 25th of March 2011, and I’m really struggling tonight and missing you. I try to get on with my life; but each time I do, I end up right back in the same place, looking for you. When I get a hug, it’s not your hug. When we embraced, it always felt so perfect. I’ll admit to you though, over our thirty month journey through cancer, each time I held you in my arms, I was always fearful to let go. I never knew from one day to the next when I’d held you in my arms for the last time.
RAF Wethersfield in 1979. Image by Glyn Baker via Wikipedia
I still have vivid memories of the night we met. It was in March 1971, at RAF Wethersfield, England. My buddies and I decided to go to the club for a few drinks and a little fun. I was sitting with them, when I noticed this beautiful young lady at the table to my right and just a bit back from us. I had no idea that night would change my life forever. I kept sneaking little glances your way, you had such natural beauty. Your hair was in pigtails, you had on a muted-color maxi dress, with sandals that laced up your legs. I could tell you weren’t happy with your date, but couldn’t approach you out of respect.
At some point, I decided to go get me another drink. The bar was very crowded, so I scampered off to the bathroom. I couldn’t believe my eyes when I walked into the lobby and you were standing there with my friend Jay. I walked right up behind you and was standing there when you said to Jay, “Can you give me a ride home? I’m not happy.”
Jay, being the intellectual person that he was, had a way of thinking before he spoke. When you said those words and he opened his mouth rather slowly to reply, that was my opening. I leaned forward just a bit over your shoulder and said, “I will!” You turned around, looked at me, and gave me the most beautiful smile I’d ever seen. I remember taking hold of your hand, and we ran out of the club together, like a couple of kids.
I’ve told you this story before, but I just want you to know that I still love you in death as I did in life.
Bob & Annie
What I didn’t know, was you’d been watching me too. One evening about halfway through your illness, I was sitting on the sofa and you were sitting up in your hospital bed. I asked you to tell me a story, and to my surprise, your story started with the night we met. You’d never told me this story before, and I loved it when you told me you’d been watching this good-looking “bloke,” but never tried to get his attention because you didn’t think you had a chance.
“Why did you wait so long to tell me this?” Your words are the missing piece of the puzzle. Our journey through life started that night. The smile you gave me when we met, I shall never forget.
Annie, remember the poem I wrote you on Christmas Eve in 1971. We were going to spend the evening together and do some Christmas shopping and follow your dad’s tradition of going to the market and getting all our goodies and a tree. I was put on standby that night and restricted to the base. You were sixty miles away, and I wasn’t there to enjoy the festivities or help you. I was missing you then, but it’s on a much higher level now. So the poem is still appropriate and shall be tucked away in my heart and in my memory, until it fades.
To you my love:
Christmas comes but once a year
Bringing all its gifts so dear,
The gift of Love the gift of Life
I’d like to make this girl my wife,
Because I can’t come
and touch her where she stands,
My gift will be my heart
This pen will be my hand.