Facebook, Grief, Loneliness, and “The Little Red Light”

Facebook, Grief, Loneliness, and “The Little Red Light”

There’s no way, I could ever talk about my wife’s Annie’s journey through cancer, or my loss, on Facebook. The platform was so wrong for a brokenhearted man. And rightfully so. It’s a big part of the social media industry, where people go to have a chit-chat with a friend or friends, play those silly games, meet new people, and the beat goes on. It was never envisioned to be a place for the bereaved, “or was it.”

Perhaps, as my grandson Andrew said, I’m a trail blazer, (and in a soft voice)–I don’t know. But what I do know, is that everything I thought I knew about Facebook, based on some comments of others, was wrong.

After losing Annie, my grief was long and very difficult. The first changes in my grief were noted between the 4th and 5th year. There’s a few things I can contribute to helping me heal, but really, Facebook has to be up there near the top of the list.

No. I didn’t join Facebook, make a post and fifty people magically show up and rescue me. It wasn’t like that, nor were my expectations. At the time, I was living on hope…I just hoped one person would acknowledge how I was feeling, as I posted and waited for that “little red light” to come on.

Facebook makes a good one night stand

When it comes to the loss of a loved one, or it could be a dog, a cat, your favorite pet, maybe your car was stolen, or you lost your job…Facebook friends immediately come on board and display an abundance of emotional support for their friend. And it’s a beautiful thing. But, there’s usually no staying power in these posts because there isn’t supposed to be. It’s usually a onetime post with maybe a follow up here are there that many friends don’t always see.

Imagine me, a heartbroken man, with no friend base, that probably needed to spend some time in a loony-bin, creating an account and pouring his heart out for the world to see. Oblivious to the one night stand.

It certainly defied logic, but what is logical about grief and loneliness anyway. Nothing!

Here’s how it happened

Two days after Annie died, my daughter Melissa who was sitting at the computer, turned around and said to me, “Mom asked me to get you on Facebook after she died, so you could reconnect with family and old fiends. “I’ve now got it set up for you to include some friends, with requests for more. She motioned for me to come over and have a look. I told her I really wasn’t interested and left it at that.

On Nov 5th, 2010, 3 days after Annie died, I decided to have a sneaky peak at my Facebook page just for the heck of it. No intention of writing anything, quite frankly, I had no idea how it worked.

As I stared at the screen trying to figure out what I was looking at, I saw the words, “what’s on your mind.” Those 4 words, created the first trickle of leaking emotions, that eventually turned into a flood as the flood gates collapsed under my emotional pressure.

I noted that I had 60 friends. Many I didn’t know that well, and some not at all. They were Melissa’s friends, that knew about her momma and how bad I was struggling. I suppose, they just wanted to be there for me. Wow, were they ever.

On that day, 5 Nov, 2010, I made my first post:

“i just lost the love of my life”

Those eight little words, just as they were written, started me on my new journey with social media. And Facebook soon became a huge part of my new world. A world full of ups and downs, highs and lows, swings and roundabouts, and sometimes a cool breeze on a summers night, depending on who stopped by on my page for a chat. (Some folks are simply uplifting.)

Writing a post in the evening, taking my Xanax — the only thing that helped me sleep — then going to bed with the anticipation of what would be waiting for me in the morning, was a bit nerve racking.

What I was doing was very risky, due to the potential taboo of sharing such a personal part of my life on Facebook, and the biggie — the rejection factor. As I laid on my couch, I’d be thinking out loud, what if no one responded, I thought. Oh well, what did I have to lose. Everyone had already ran away from me…Because people don’t feel comfortable being around grievers. They just don’t know what to say during that awkward, moment of silence. And the truth is, I’d already been in Anticipatory grief and suffered from loneliness from the time I was told she would not survive her cancer, thirty months earlier. Being a caregiver or griever under certain conditions can be a very lonely and cold world to live in. However, we must move forward, one day at a time.

What I was now emotionally facing with Facebook, wasn’t anything new, just different. I was already an emotional wreck. Now, more than ever, I needed kindness, love and support. Question was, would I get it.

In the beginning the posts were like instant gratification and the beginning of an addiction, so to speak. Always chasing the high, looking for another feel good moment — “the little red light.”

Sometimes, I would sit in my dining room chair for long periods of time, just waiting for someone to reply. And then it would happen. That “little red light” came on and life was good, someone liked my post. It was just one, but it was a start, and to a griever, how wonderful to see someone acknowledge your feelings. But, the moment was fleeting as, I set back in my chair.

I really didn’t know what I was doing, but I had a vision, to inspire others, while letting the world know about Annie, and her traumatic life and death struggle with cancer… And the effects it had on her loving caregiver husband.

I posted my heart in a way that left me vulnerable to potential comments like, telling me Facebook was no place for a griever. However, that never happened. Instead, I got an outpouring of love and emotional support that was truly amazing. And I don’t know why. But I know this, the staying power of sharing my journey through grief with others, has not waned.

Over the past seven years I’ve created a network of friends, over 700, mostly through grief, which is always a good indicator that most are caring, kind and compassionate people, with a loving heart. My Facebook friends have always been there for me, like a beacon of light, or perhaps a ray of hope, helping me navigate the troubled waters that all grievers encounter.

I took a chance on Facebook and I guess, humanity, to hear my story, feel my pain, and understand that life is about love and being loved. At that point in my life, that was all that really mattered.

And I will tell you, beyond any doubt, when Melissa put my information on the Facebook page she created for me, and gave me some new friends, it was the beginning of something very special. It appeared I was creating my own rainbow, and I found the pot of gold at the end of the rainbow. Almost seven years later it takes on the form of healing, unwavering friendships, and of course, the “Little Red Light.”

(Note: The top picture is the original first post/profile picture, and was taken 2 weeks before Annie died, while I was sitting at our dining room table. That would have been the third week of Oct, 2010.)

Loneliness

Loneliness

I believe that one of life’s greatest tragedies, now, and perhaps from the beginning of time is, loneliness.

I doubt that there are many people that can say they haven’t been lonely at some point in their life. Sometimes we’re simply victims of circumstance, isolation, or suffered a tragic loss. There are many reasons for loneliness, and it really doesn’t matter why you are lonely, unless you don’t somehow resolve the issue causing the loneliness.

Then it becomes a problem.

Staying isolated or lonely should not be considered an option, but is a huge problem worldwide. And it can lead to various illnesses, untold misery, and even suicide. You must seek help. And that doesn’t have to be in the form of a therapist. Seek out family, friends, someone that will listen to you. If I were walking through the market and a person walked up to me and said, I’m lonely, my immediate reply would be, “how can I help you.” And mean it. His/her words would start a dialogue.

Being a people watcher, I see things that, often times, most people don’t. It’s not uncommon for me to see a distressed looking person, walk over to him/her and ask, “Are you okay?” And in every case so far, the person has said that their okay. And you know they’re not. But for those that are hurting, you at least acknowledged their pain. And that does help them knowing, someone cares.

I’ve written a few compelling articles on loneliness over the past 2 years. And looking through them, I’ve realize I’m really good at identifying problems, but I didn’t offer much help. So I’ve been researching and believe I’ve found some really good help for many of you suffering from isolation or loneliness. They are both 24 hour service’s and you will get a real person. So if you are lonely, feel isolated, emotionally distressed, depressed, or need someone to talk too, make the call. Both these services are provided free of charge.

The neat thing about calling them and having a chat was, their willingness and wanting to help. I told both locations they may get a lot of calls and that seemed to excite them. They truly want to help you. And I do, too.

Institute on Aging is for older adults, 60 and over. Or if your disabled, one can be younger. Check out their beautiful website. It has a wealth of information and some help too. These people do care.

IOA has a friendship warm line you can call when you feel emotionally drained, lonely, anxious, depressed, or just need someone to talk to: 1-800-971-0016 They have no caller ID, so your call is anonymous. I called them at 3 AM, and the lady said she was the answering service and that if I was in crisis mode, or suicidal, she’d connect me to an experienced member. She said they handle thousands of calls a year.

HopeLine has no age group, and provides a wealth of support. They have a website, too. They are a true 24-hour service, and will talk to you if you’re lonely, emotionally distressed, anxious, depressed, or perhaps just need someone to chat with. The phone number is also a crisis or suicide hotline. I called them today, and based on my area code, they hooked me up with a lady in my town, Wichita, Kansas. They have a large building here, open 24/7 with on-duty counselor’s. These folks appear to be the real deal, and have offices throughout the country, fully staffed. If there were to be an office in your area, you’d be onto a good thing. You can tell, I was impressed. The phone numbers are: 1-919-231-4525 and 1-877-235-4525. They also have connections through those two phone numbers for PTSD Veterans.

So, if you’re feeling isolated, lonely, anxious, depressed, wake up from a nightmare in a crisis or feel suicidal, make the call.

Either one of these sites will help you. Through studies and research we know, depression, isolation, or loneliness, can be precursors to suicide.  The chat lines are geared to try to not let your emotions get that far. Make the call!

After I lost my wife Annie to cancer, I was so lonely. In the middle of the night I had no one to talk too, and no guidance as to where I could even call. Well, you’ve got guidance now. Use it, If the need arises.

These emotions I’ve talked about can morph into a huge problem if you’re not careful. Don’t let them. It doesn’t have to be that way. One person can touch a life and change it forever. Maybe that one person will be on the end of the line, you call.  Surely you deserve that. I certainly think you do.

I wish you all, the best.

Prostate Cancer: the insidious disease for men

Prostate Cancer: the insidious disease for men

If you’re reading this and have prostate cancer, there’s a really good chance this article will help you. It’s based on my experience and will give you information on new genetic testing, based on a lot of research that can change your outlook for treatment, that leaves men with such dreadful side effects, and sometimes don’t even work.

Prostate cancer is the #1 most common cause of cancer in men worldwide and #2 in the USA. It is estimated that one in every six men will get it. Every 3.3 seconds a man is diagnosed with the disease. Every 20 minutes a man dies from the disease. ( “ZERO prostate cancer–2017 stats”) The exact cause of prostate cancer is unknown. But recent studies indicate the likely cause may be diet. You know the old saying, you are what you eat.

Read this article carefully if you or your loved one has the disease or, share it with someone who does. It will help you by guiding you to the right questions, to ask your doctor. Genetic testing has allowed me to relax and take my mind of what doctors said, which, was a clear cut case for surgery or radiation. I have a significant prostate cancer, but genetic testing says, treatment will not benefit me. And I’m not dying, or sick.

Genetic testing is not on the protocol yet, for weighing out treatment options. If you or a loved one are diagnosed, ask about Genetic Testing. As you read this article, you’ll see the major difference/impact it has made on my life and how it totally changed my treatment strategy.

Here are some of the early warning symptoms, that may or may not be prostate cancer:

  • Burning or pain during urination,
  • Difficulty urinating, or trouble starting and stopping while urinating,
  • More frequent urges to urinate at night,
  • Loss of bladder control,
  • Decreased flow or velocity of urine stream,
  • Blood in urine

Normally, when the symptoms show up, it has not been caught early, but perhaps early enough to be treated successfully–All men over 50 need to have their prostate checked and a PSA blood screening annually–if a father or brother has had prostate cancer, some studies suggest a man should consider having a PSA test as early as 35 years old.

In an effort to keep this article simple, I’m going to speak about what the man needs to do, and not about all the scientific stuff that’s better off left to the scientists. Science is complicated, what needs to be done to save, prolong or provide some quality of life, not so much.

It’s virtually impossible to reach out and touch the lives of many men, warning them of the dangers of this dreadful cancer. Why?  Most men don’t want to talk about a disease that is so personal, and private, the words need not be spoken. Therefore, the voice of reason is silenced.

Most prostate cancer deaths in men occur between the ages of 50 and 60, then jump to 80 and above. Reason being, younger healthy men will not go get screened, it can’t happen to them. So they say. Ignorance is bliss. And that’s basically the attitude I took and part of the reason why I got myself in a bit of a mess, which, against the odds, I’ve overcome. For those over 80, they’ve usually had it for a number of years and it’s run its course.

Through my story, my goal is to help you “safely” use “Active Surveillance” when possible, and  keep your prostate in your body as long as you can, if that’s your desire. Treatments, such as surgery and radiation come with some not so good side effects. The side effects that effect most men after treatment are, erectile dysfunction and incontinence. And both are major problems. Quite common.

If you’ve already had the surgery, the following paragraphs may apply to you.

In 2016, UCLA Urology released guidelines on how successful radical surgery and radiation are. According to UCLA Urology, 50% of all surgeries to remove the cancer, fail. The cancer comes back. Radiation has a 27 percent likely hood of the cancer returning.

Genetic testing-Decipher Biopsy: This is one of the two genetic tests I had and talk about. And how it could help you. Decipher biopsy is supported by in depth clinical studies.

http://genomedx.com/decipher-test/improving-treatment-decisions/     This is the link to the next 5 paragraphs, along with more detailed information on genetic testing of prostate cancer. Do yourself a favor, and read the information before you have treatment of any sort.

Decipher biopsy-post op. If you have surgery and it fails, the Decipher biopsy may be your saving grace. Once the surgery has failed and you’re scared of the relapse, have the Decipher Biopsy.post op, if you can. Decipher literature states that 90% of those that fail surgery, will not develop metastases or die of prostate cancer. Huge numbers. And you need to know that.  This means that – if treated after the failed surgery, patients may receive no benefit at all. Worse, they may be subject to unnecessary complications caused by post-surgery treatment for prostate cancer. Which is radiation with ADT (androgen deprivation therapy) that reduce levels of male hormones, testosterone and dihydrotestosterone.  The urologist from Memorial Sloan Kettering, Urology Group calls ADT, a form of castration. Very primitive and doesn’t work all that well.

Decipher-post op, may help avoid over-treatment by reclassifying those men originally identified as high-risk, who are unlikely to develop metastatic disease.

That means, if your surgery fails, check with your urologist/oncologist and see if you can have the Decipher Biopsy-post op. In many cases, it will allow a patient to avoid further intervention via radiation.

In clinical studies of high-risk men after surgery, Decipher reclassified 60% of men to lower risk categories3. 98.5% of patients reclassified to low risk by Decipher did not develop metastasis within 5 years of radical prostatectomy.

Across multiple clinical utility studies, 39% of physicians changed patient treatment planning after reviewing Decipher results 4,5, resulting in a 50% reduction in radiation therapy planning in those identified as low risk by Decipher.

bob after being diagnosed with prostate cancerWhat made me go public with my prostate cancer?

Almost six years ago, I watched in pain, as my wife Annie lost her battle with a dreadfully painful cancer, multiple myeloma, that left her with many broken and very badly diseased bones.

Once prostate cancer spreads to the bones, Dr. Grant Rine, radiology/oncology, Wichita, Kansas, who was Annie’s radiologist, told me prostate cancer can be like Annie’s. Very painful and debilitating.

So, I’ve decided to lay all the cards on the table, and discuss a subject that most men will not.

This is important information and can save some lives through early detection, not to mention the burden and emotional instability the treatments can place on a patient, and most of the time the effects it has on the woman or partner in a relationship. I will talk about some recent techniques that make the decision on when to have radiation or radical surgery much easier. And discuss the possibility of being over treated, meaning, having treatment too soon, when treatment may not be required for several years. Most often, but not always, prostate cancer is detected when it’s low grade and grows very slowly.

My story

During a routine physical exam by my family doctor in Jan 2016, he noted that my PSA, a simple blood test that measures the level of a protein called, prostate-specific antigen, a part of the screening for prostate cancer, was still elevated at 5.40 ng/ml, and that I needed to go back and see Dr. Byrd, my urologist. I was scheduled for an appointment to see Dr. Byrd on, I believe Jan 21, 2016. (Note: Again, If you are over fifty, you need to have your primary care doctor check your PSA annually.)

Most insurances and Medicare recognize a PSA score of 4.0, as the standard when action needs to be taken and will be covered by them. Under 4.0 they won’t usually do anything, or pay for anything, other than the screening. Of course, once diagnosed with cancer PSA tests are administered as needed.

On the 21st of Jan, 2016, I saw Dr. Byrd. After chatting with me about my PSA results, he leaned over and got a plastic glove out of a box, which was my cue to lower my pants. He then had me lean over the bed and he inserted his finger into my rectum to check my prostate for nodules or any enlargement. To the touch, my prostate was normal.

After the examination he told me that as I had no signs of infection or enlargement of the  prostate, which can raise the PSA levels, my chances of having prostate cancer were about 35% and it would be wise to get a biopsy and rule it in or out.

There was no hesitation in my voice, as my PSA score had been elevating slowly over the past 3 years, starting in July 2013 when it was 4.20. During that time frame July 2013 to Jan 2016 I had 5 screenings and all were elevated but one, and it was 3.84. So, I kind of knew I had prostate cancer. I had no symptoms other than the PSA score.

Those three years that my PSA levels were elevated, I was in a difficult battle with grief, over the loss of my wife Annie. I ignored the possibility of cancer, not wanting to talk about it. But still, I spent a lot of time doing research, reading anything I could on the cancer, to include understanding the treatment options, all the side effects of the treatment, and the biopsy.  Now I would be putting all that knowledge to use.

Feb 3rd, 2016, I had my prostate biopsy. I was not anxious, in fact, I was very calm. The nurse left the room while I stripped down and put a gown on. She then came back in, asked me to set on the bed and told me that the doctor would be in soon. (Three days prior to the biopsy I was put on antibiotics to help ward off infection.)

When Dr. Byrd came in, he had me lay on my left side, with my buttocks extending a fraction over the edge of the bed. He then inserted the TRUS probe, which is about the size of a finger into my rectum, for a guided needle biopsy. A needle is inserted through the probe to numb the prostate before the tissue samples of the prostate are taken. Once numb, Dr. Byrd went all around my prostate and took 12 core samples. The procedure took about twenty minutes and although uncomfortable, was not painful. (note: some doctors do the biopsy while the individual is lying on his back or stomach)

After the procedure he told me that I would have some rectal bleeding, especially during bowel movements for a few days, and maybe longer. The blood in my semen can last up to 6 weeks, and some cases 3 to 4 months. All of which is normal.

My rectal bleeding was over in a week or two at the most, and semen was normal in about three weeks.  In the semen the blood is usually a rust color and as it heals, turns brownish. My blood looked like Ketchup for a few days, then turned to the rust color.
It’s okay to have intercourse after a biopsy, but studies suggest you wait a couple of days, as the strain may cause more blood in the semen. You’ll know if you’re aggravating your prostate by the color of the blood. It’ll be bright red.

Everything we’ve talked about so far has been relatively benign or straight forward. From this point on, my life got very tricky, dealing with both the known and the unknown.

Through this article, hopefully, I can get a dialogue started for you and perhaps help you understand this insidious disease, a little better.

On 13 Feb, 2016, I went back to Dr. Byrd’s office and received my pathology report. Out of 12 core samples, 6 were malignant. I knew that couldn’t be good.

I essentially have a high volume cancer, meaning, in my case, it’s covering approximately half of my prostate. Do to the high volume, after I have treatment, surgery or radiation, the cancer has a 50% chance of coming back. Low volume cancer, indicates a low risk of returning after treatment.  And therein lies the problem for me. Surgery may or may not help me. Studies show, that a patient with a high volume cancer, with 50% volume, don’t do very well long term. And that’s with or without treatment. My cancer was not caught as early as we first though. Lack of symptoms, or failing to recognize the symptoms caused the problem for me.  (Only about 25% of all men with an elevated PSA count have prostate cancer.)

But, my case is rather complicated and confusing as my PSA score is not indicative of a high volume of cancer. Still, half of my prostate is cancerous, so, it is what it is.

Five of the samples were low grade cancer, Gleason score of 6. But one was intermediate grade with a Gleason score of 7. Essentially, I had an intermediate grade cancer due to the 7. And that one sample is what’s causing all the problems.  A Gleason score of 8-10 is a high grade cancer, likely to spread. The pathologist assigns the Gleason score.

After Dr. Byrd spoke to me for awhile, he gave me a list of treatment options. The two viable ones were, radiation or surgery.

(Note: There are other treatment options out there. Including advanced cancer clinical trials. Check out/search for: UCLA Medical Center, #3 ranked Urology Group in the country.

He asked me what I wanted to do.

I told him nothing at the moment, I needed some time to think about it. I asked for three months with active surveillance, and he said okay.

All the literature and research I’ve read says, upon initial diagnosis, unless the cancer is considered high grade, step back, take some time away and do some research on your options.

For whatever reason, I was still uncomfortable with the situation as it presented itself. So I said to him, I’m supposed to make a major life changing decision based on this information. Is this it!

He thought about what I said for a minute, then said, there is one thing we can do. A Prolaris Biopsy, but it’s expensive and your insurance might not pay for it. It could be as much as $4,000, or simply a co-pay of $379. He had the nurse run it through my insurance, Medicare-Tricare for Life, and it was covered 100%. I said, let’s do it. He smiled saying, it will be interesting to see just how involved the cancer is.

Prolaris testing is a genetic test of a sample of the biopsy I recently had. If you or a loved one has prostate cancer, it can guide you on whether you need treatment right away or if active surveillance is appropriate. It would be wise to hold onto your prostate until you need treatment.

To a urologist or doctor, the smart thing to do is get the prostate radiated, or have radical surgery to remove it. I understand their thinking, that a removed cancer can’t hurt. But as you’re seeing it a bit more complicated than that. Ultimately, it’s your decision.

Three months ago at my prostate support group, I watched a 6 month old video.  The speaker was one of the top urologists in the country. He was working at Memorial Sloan Kettering Hospital, Urology Group, ranked fifth best in the nation.  He said, one of the most difficult challenges for him is seeing all the men that come to him for help. Their sad statement is–why did I have surgery so early, when I probably had several years before needing treatment. According to the urologist, it happens because the men are freaked out by the cancer, don’t understand it and just want it out. Of course, the doctors are happy to oblige them, as they want it out too.

And then of course, there’s this: In 2013, over 15 billion dollars was spent on prostate treatment. That’s a lot of money.

Remember what I said earlier. “I’m supposed to make a major life changing decision based on the limited information I had.”  I couldn’t do it. And you need to think about it.” If appropriate, have genetic testing. Your doctor will tell you if that’s a viable option.

After the biopsy report comes in, make sure you get a copy of the pathology report, chill, and if need be, make a request for the Prolaris biopsy, if you want to go that route. Once that’s done, you can compare the two and if you were leaning towards treatment, radiation or surgery, there’s a 40 to 50 percent chance you will change your mind and choose active surveillance.

March 14th, 2016, I got my Prolaris results back.

Prolaris staged my cancer at T1c. Which is a low stage and means it’s still contained within the prostate.  Pathology does not stage the cancer, but is one of the factors in staging.

Prostate cancer is staged between one and four. One being the best, four being the worst. UCLA Urology website breaks that down.
Staging the cancer is one of the most important factors in choosing treatment options. Often times treatment choices are based on staging. So, make sure your cancer is staged. Ask your urologist or oncologist what stage you are in. It really does matter.

Here’s what my Prolaris said: “This patients 10 year risk of prostate cancer specific mortality is 4% with conservative management.” “Mortality risks could be altered by various therapeutic interventions.” In other words, if I go on active surveillance, have a PSA test every 3 months, and a visit with my urologist, that is considered conservative management. If something were to go wrong, the doctor would likely detect it in time to do treatment. Surgery or radiation.

And every day I don’t need treatment, is a good day.

When I left the doctor’s office that day, I was upbeat and feeling good. If I hadn’t pushed for more information, I would never have known about the Prolaris test. And, I now knew for sure, I was hanging onto my prostate gland and not in any danger at the moment. I would be seeing Dr. Byrd again on May 13th, 2016 with fresh PSA test results.

May 13th, 2016, I walked into Dr. Byrd’s office. We had the usual chat,  and he told me my PSA score was 4.6, down from 5.40.  As we knew the cancer was still there, it was a good result, but didn’t mean much at the time.

Dr. Byrd asked me what I wanted to do, and I told him I wanted 3 more months. I think it kind of aggravated him a bit as he sharply said, Bob, you’re going to have to deal with this sooner or later, it’s not going to go away.

Dr. Byrd was advising me, but not in a way that I didn’t have some wiggle room to make my own decision. In other words, I’m not going against medical advice, I actually agree with him on surgery at some point, but I want more time and information before I make a decision.

Before I left, I told him I’d like to go to Kansas City, and get a prostate specific MRI. Once I had those results, making my decision would be based on everything I could possibly know. So I thought.

To my amazement, he said we now have the same MRI technology here at Wesley Medical Center as Kansas City, and training the techs is ongoing.

Since I was due to see him again in mid Aug, we set the MRI up for the first week of August. He said he needed 6 months between the biopsy and MRI, in case the prostate was still inflamed a bit.

August 1st, 2016, I had my prostate MRI. The urologist would now be able to see the cancer, up close and personal. According to the radiology tech, I was the first patient to have the new prostate MRI in our area. Which may or may not be true. I was in the tube from 1pm until 2:55 pm. Allegedly, again, according to the tech they took 2,000 pictures. Seemed like a lot to me, but they also took pictures of the surrounding area looking for any signs of cancer in the bladder or pelvic lymph nodes.

A week later I had my PSA blood work done, with the results being faxed to Dr. Byrd.

August 15th, 2016, I went back to Dr. Byrd’s office with a copy of the CD given to me after the MRI to,  hand carry to my appointment.

Dr. Byrd went over the written report with me. The good news was, we now had a definitive determination that the cancer had not spread beyond the prostate as my entire pelvic area was clear.  It’s never 100 percent for sure, but it looked good and the best they can do at the moment.

The prostate was basically as he thought it would be. There was one area, the Gleason 7, I talked about earlier in this article, that was and is concerning. This is the exact wording on the report. “High clinically significant cancer is likely to be present.” I knew it, but not in those worded terms.

My PSA had dropped again, from 4.60 to 4.30. I asked him why that was happening and he said, to drive me crazy, meaning him.
He went through all the paperwork, then shocked me by saying, if I treat you now, I run the risk of over treating you. He said, I could have three more months of active surveillance.

Over treating means, treating me before it was clearly necessary. Dr. Byrd had been trying to get me to have surgery or radiation, but for now, it seems that won’t be necessary.

During our visit I spoke up, telling him I needed four more months. While I was explaining myself to him, (I wanted to go spend 50 days in Northern California Salmon fishing), his head was leaning over with his eyes closed and his fingers seemed to be massaging his eyes rather roughly. He was rather deep in thought. However, in the end he said, he’d see me in four months.

That was a high five moment for me, but he didn’t know that.

But as I was starting to learn, sometimes when things seem to be too good to be true, they may be.

Aug 26th, 2016, I got a call from Lauren, Dr. Byrd’s nurse, who said that Dr. Byrd had rescinded my active surveillance program for now. He apparently looked at the CD of the MRI at some point after my appointment and saw something that was troubling to him. So in a group meeting with all the urologists they looked at the CD and the consensus was, I need further genetic testing.

Aug 29th, 2016, another sample of my biopsy was sent off, this time for a Decipher biopsy. This is a genetic test they normally use when a person has already had his prostate removed and the cancer is coming back. The patient is in relapse. In my case, it tells them if it’s high grade or not, gives a 5 year metastasis, and a 10 year prostate cancer specific mortality. And whether or not I’m a good candidate for Active Surveillance.

Some days, I simply feel like rolling the dice and taking the ten years or whatever I can get, and leave the cancer alone. Then, I flip the coin over and realize, what a selfish, foolish, act that could be to my loved ones. Then, I look at the fail rates of surgery and radiation and it becomes a catch 22. At some point, I’ll probably have to make a decision. Hopefully, way down the road.

On 15 September 2016, my Decipher biopsy came back inconclusive. The lab said they did not have enough information to make a determination. And I don’t know what information their speaking of. I do know the information was resubmitted a few days later.

What to know

Let me stress a couple of points. Having surgery or radiation can help and perhaps cure you when dealing with a low volume cancer, caught early enough. However, before having radiation or surgery, if you’re in your mid 70’s, you might want to have genetic testing if you can, giving yourself a chance to, perhaps, ride out the cancer if it’s low grade.

If you’re in your 60’s, the decision is much tougher. But, if you qualify for genetic testing, it will give you a good snapshot of how your cancer is behaving, and may prevent you having early treatment, that you don’t yet  need. And you may be a candidate for active surveillance, which allows you get on with your life while seeing your urologist every 3 months for a PSA. And even if you don’t get the
genetic testing, low grade prostate cancer, may qualify for active surveillance. Ask your Urologist or Oncologist.

If you are in your 50’s or younger and diagnosed with prostate cancer, take the time to research the disease, before you pull the trigger on surgery or radiation treatment. Again: Considerations to the side effects need to be thought out. There’s many.  If you’re married or have a partner, you really need to have that awkward discussion with them too. If your cancer is low grade, Gleason score of 6, many of the leading urologist recommend keeping your prostate as long as you safely can through active surveillance, avoiding the side effects as long as possible. Have genetic testing if you can. Ultimately, the decision lies with you and your urologist or oncologist. But don’t panic and make a snap decision, unless your cancer is high grade. You’ll have a good idea where you stand from the biopsy/pathology report.

What I’m saying is this. If you have a low grade, low volume cancer, which most are, Gleason score of 6, you may not need treatment for many years. That’s a big deal to a happy couple with an active sex life. Psychologically, to a man that loses his manhood, it can be devastating. And incontinence is almost mandatory after surgery. Counseling is often times recommended.

But, if you do need to have surgery, make sure your urologist/oncologist know how you feel about erectile dysfunction, and that they practice nerve sparing surgery. Most do. Still, make your intentions clear on ED.  Don’t let a doctor make that decision for you.  If the nerves are spared, and sometimes they can be, there’s a good chance the little blue pill will get you where you want to be. Without the nerves, well, if your under 60 they can grow back in two years. Your urologist will advise you on what to expect.

Reality is, saving a life is what’s import in the final analysis. But, the side effects have to be considered by all concerned.

Decipher Biopsy

Waiting for my Decipher results to come back created a lot of anxiety to me. My fear was, that the cancer was spreading outside the prostate, based on something they saw in the MRI, that perhaps the radiologist missed.

On Oct 3rd, 2016, I got my Decipher results back. Better news than any of us expected. My Decipher score was 0.18, Genomic Low Risk Cancer. Chance of spreading in 5 years is 0.8%, 10 year prostate specific mortality is 1.5%. Lowest risk is 0.00, while 0.45 is average, so at 0.18, I’m in a good place to be with this cancer.

Interpretation as written on the report is as follows:  Among men with a low risk Decipher prostate cancer classifier score, clinical studies have shown that this cancer has a favorable prognosis. Men with a low risk Decipher score, may be suitable candidates for active surveillance and may have excellent outcomes even when treated with local therapy alone.

The Decipher test was the deciding factor on my treatment. What looked to be a cut and dry treatment plan for my significant cancer, at some point, surgery or radiation, was only true until all the facts were in. Genetic testing saved me a lot of misery, as I was listed at high risk for cancer return after surgery. As you’ve read, I no longer need it, and may never need it. Of course, nothing is certain with any cancer. The doctor tries to treat or cure it, and we do our bit, and what we can to live and fight another day.

On the 14th of Dec, I received my latest PSA score. It had now dropped to 4.1. Incredible news. My PSA is still trending down, which means the cancer is a little less active than it was last time I had it tested in mid August.

It’s now Jan 13th, 2017, and I’m still on active surveillance and doing well. My next PSA is on April 3rd, 2017.

Support Group

If you have prostate cancer, see if there is a support group in your area. I go to Wichita Prostate Cancer Support Group, and it offers me a breath of fresh air. Some folks are emotionally struggling with the disease, some are fighting metastasis (the cancer has spread), some have had radiation, some surgery, and then there’s me, on active surveillance. And we all have our own individual story to tell. And that’s what makes the group so important and so special. We emotionally support each other as best we can.

It reminds me of being in a war zone and we’re in a battle for our lives. We all have been wounded, some worse than others. Some have been hit by a flame thrower and had it (cancer) burnt out, some have been pierced by the blade and the bullet (cancer) removed, some have life altering injuries requiring continual treatment, and some are okay. But we’re all on guard duty, ever so vigilant, watching and waiting. And we all have one thing in common, “we are all survivors” of one of mans greatest adversaries.

I wish you all, the best!

Contact me privately, if you need to talk or ask a question. I can help stabilize your thoughts.
bob@thecaregiverspace.org

Grief and loneliness, precious dreams

Grief and loneliness, precious dreams

When we lose a loved one, what is it we want most.

In my cases, I kept saying over and over, “I want her back,” “I just want her back!”

Well, unfortunately it doesn’t work that way. As I found, as did many before me, death
is so final. It’s the end, it’s over, a life is just gone. There’s no bringing our loved one back.

So, what’s the next best thing.

Precious Dreams!

How do we do that? Find those elusive dreams. It may be much easier than you think.

Research says, by laying on a bed of fragrant Rose petals, it is possible to have a sweet
dream. But, according to science, it is not possible to target a specific dream.

We grievers are not so much interested in a specific dream, we just want to see our loved
one–one more time. Perhaps, hold them in our arms. It is possible, you know.

If you are grieving, when life becomes so vivid, it seems surreal, you, my friend, are a good
candidate for some lost loved one dreams. (That was me) Your senses are already elevated
to a place where non grievers, can’t go. And that’s why folks don’t often understand grievers.
Our minds work from a higher level of consciousness, and can create a complexity to us that
others quite simply don’t, understand. But that’s okay.

I know, I know. It sounds like voodoo magic, or something out of a Science Fiction show. But, it isn’t.
It’s real, and perhaps you can do it too. At least give it a try.

Follow my lead on this, the truth

When Annie died, I was so broken and lost. I really didn’t care if I lived or died. Day to day without her,
was unbearable. The grief and loneliness would come at me like large waves, one after the other, hitting
the sea shore. And there was no barrier to slow them down. All my emotional reserves got caught up in
the world of cancer and had dissipated. I truly was wandering in the darkness without a shield.

Then, life happened.

One evening, not long after her death, when I laid down on my sofa, which was still about 5 feet or so from
her hospital bed, the place where she lived for 30 months, and eventually died, I noticed the sports bandage
she wore on her hand. She broke her pinky finger a few weeks before she passed and the sports bandage
provided good support.

She would rub Sweet Pea Jasmine oil on the sports bandage and wheel herself around the living room in
her wheelchair, wiping the oil on our cloth furniture and curtains, making our home smell beautiful.

The sports bandage was significant in that, I thought, that if I were to wipe some of the oil on my pillow,
it might invoke a dream of her, despite the scientific data saying otherwise..

So I got up off the couch and walked into the dining room where she kept her oil. I was absolutely shocked,
when I saw what I was led too. Her Angel perfume, that she wore for approximately19 years was laying
beside the oil. Instinctively, I knew or felt that I had stumbled onto something with so much potential. And
believe me, it turned out to be an experience, that to this day, was quite simply amazing, and certainly
altered my way of thinking, forever.

I laid down and said a prayer, asking the creator if I could see her one more time. I needed to know that she
was okay. Annie suffered many diseased and broken bones from her cancer. It left her legs very weak, and
unstable. Her spine had collapsed in the 3rd week of her cancer, which left her back, badly bowed. She was
always in pain and suffering.

I sprayed her perfume on my pillow case and laid down and eventually fell asleep.

It was a life altering, game changing, mind blowing, call it what you want type of experience,
and no doubt a gift to me.

The Dream

Annie was standing beside her hospital bed, jumping around in the new pajamas I’d bought for
her, letting me know by turning from side to side that her spine was now healed and her legs were
strong and steady. I never saw her face, but I didn’t need to. I knew it was her.

My take on the dream–She wanted me to know that she was finally free of all the torment and pain
she had been suffering.

Annie and I started dabbling in Antiques in the 1970’s. And ended up running two successful antique
businesses.

In one of my dreams, we were at a Flea Market and finding all kinds of treasures, little goodies, and
having a blast together. It felt as if she’d never left. But alas, all good things must end, some day.

I woke up in the morning, and became very disappointed when I realized that Annie was not beside me,
and the treasures, well, the dream was a treasured memory and will last a life time.

Over a relatively short period of time, I had various different dreams, and it seemed, all my questions
were being answered.

One of my dreams was very curiously strange, but still, it was a dream and better than nothing.

In this dream, I was sitting on our sofa in the living room. Annie came walking in with a beautiful skirt
and blouse on. Her face looked lovely and her eyes were smiling.

She asked me if I would like to meet her friends.

I said, “I would love too.”

Her friends came walking in from the kitchen area, one person at a time. There were seven of them.
The first person was a male, then a female, and so on. They all had big smiles, walked with rather
stiff legs, over to, and sat around our fire place. It was, kind of strange, they were just sitting there and
smiling.

Annie! Those people are dead.

I know, their my friends.

I woke immediately. It scared me a bit at first, but as I gave it more thought, she sure looked beautiful and
was happy. Her friends, well, they must have been nice or she would not have been with them.

And I think, at that point, my subconscious was helping me accept the fact that she was no longer physically
with me, nor would she ever be. Of course, that’s my interpretation. “We must move on.”

When invoking dreams, one must take the good with the bad. If you were a caregiver for a terminally ill person
as was I, and witnessed as much trauma and pain as did I, you set the stage for quite possibly a psychic
traumatic dream. In other words, the dream is linked to psychic trauma. They’re not good dreams, nor uncommon
among folks that suffered from witnessing as much trauma as I. They can be very unsettling, but I believe they
were a part of my healing process.

I had a question that kept running through my mind. “I can’t let go of her, until she lets go of me.”

I spoke to my psychologist about those words, and he said in a soft voice, “Bob, she’s not holding onto you.”

Feeling very unsatisfied and unfulfilled, I did the only thing I could do. When I laid down that night, I said my
prayer, and asked my creator for clarification on my question. Then I sprayed my pillowcase with her Angel
perfume and closed my eyes and waited.

The dream I had was incredible.

Annie and I were running over what appeared to be a grassy slope. We were hand in hand, arms swinging
in unison, like a couple of kids. When the dream ended, we were standing on an old porch. Annie had let
go of my hand. There was a lady with dark hair standing in the doorway behind an old fashioned screen door.
I looked at her, then turned to Annie who had her hand extended to me. She wanted to slap hands. I reached
over and gently slapped my hand against hers. She gave me a beautiful smile, turned, stepped off the porch,
and disappeared.

I believe Annie was telling me through my dream, that when I’m ready it’s was okay to move on. She’d just
let go of me.

My psychologist was right. I was hanging onto her, and she helped me understand that, “it can only or, will
ever be Annie and Bobby in my dreams.” It was a hard pill to swallow at the time, but I knew the clock was
ticking and if I didn’t fight the beast, called grief, I would get left behind. She was moving on.

The touch

Earlier, I mentioned it’s possible to feel you’re loved one. Here’s my one and only experience with her touch
and it was painfully beautiful.

(In all my dreams, with the exception of this one, when I mention, for example, Annie was holding my hand,
I have a visual of her holding my hand, but I can’t actually feel it.)

I was sitting on a stool near our large garage door opening, on the left side if you were walking up to the garage.
My daughter Melissa was with me.

My left arm started gently rising up for no apparent reason. I felt something take hold of my hand, gently
maneuvering me off the bench.

I said to Melissa, “Mom is holding my hand.” I couldn’t see her, but from her touch, and the feel, I knew it was
her. She started slowly and gently pulling me down the driveway, as if taking me on a walk. Melissa was following
behind us. We stopped and I put my arm around her side, feeling her body form as if it were real. By touch,
I could feel my arm around her body, and tell she had some sort of sweater on. So Amazing.

I said, “yes, I can feel you.”

She said, “Only for a painful moment.”

It was terribly painful feeling her touch, one more time, and having to let go.

To this day, I can still feel that touch in my memory. Not many folks can say that.

An if you’re curious, I documented these dreams after they happened. Being able to touch her, was
the dream of May 20th, 2011. Seven months post death.

On 6 July 2011, I stopped trying to invoke dreams. All my questions, the ones that troubled me the most
had been answered. And I was going to accept the gifts (dreams) for what they were. I knew nothing good
could come out of me continually trying to find her, as it was not going to happen. It was time for healing.

Still, I had dreams of her, but, most were segmented and hard to understand.

To this day, I still have dreams of Annie. Some are very good, some are bad, and some are noteworthy.

If you reread that last paragraph again, you’ll notice, I’m not talking about pain or suffering, trauma or anything else.

Because, I’m a survivor. Grief can no longer deceive, torment, or hurt me, and loneliness is now a product of my
own making. And, I can fix that if, and when, the notion strikes me.

One thing for sure. I will keep writing as long as my voice is not silenced, and I can help others.

My heart, soul, and spirit is vested into helping others now, and I see no reason to change that.

I wish you all, the best.

Visit Annie’s online memorial

Caregiving, a rollercoaster ride from Hell

Caregiving, a rollercoaster ride from Hell

In my opinion, caregiver syndrome or caregiver stress is directly related to exhaustion, anger, rage, guilt, isolation or loneliness that results from unrelieved caring for a terminally or chronically ill dependent or loved one over a period of time. The healthcare professionals, will talk to you about caregiver syndrome or caregiver stress, but as it is not listed in the Diagnostic and Statistical Manual of Mental Health Disorders, that’s all it is, just talk.

Imagine, if something so widely known and talked about by the professionals was listed in the Diagnostic and Statistical Manual of Mental Disorders, insurance companies would have to cover any issues affecting the caregiver due to emotional stress, or physical illnesses.  And there are so many.

More importantly, some of the many caregivers suffering emotional stress issues would qualify for some sort of compensation from local, state, or governmental health agencies. Disability issues among caregivers is certainly real and needs to be addressed, sooner, rather than later.

Care giving has been described as a “rollercoaster ride from Hell.”  Many, if not most caregivers would probably agree with that definition.  My experience is that, it certainly can be.

Life’s dirty little secret

What happens after the care giving or during long term caring.  We know that many patients or loved ones outlive their caregiver.

Why?

This happened to me and can or could happen to many of you, in one form or another.

Three months after Annie died I had a physical. I was told all was well, with the exception of a vitamin D deficiency.
Immediately after the physical, I got a lecture from the doctor in a distinctively different tone of voice.  He informed me that I needed to pay close attention to my body, as intense stress from care giving can set forth a chain of events in the body leading to a whole sundry of illnesses down the road.  (I didn’t believe him.)

But, over time my immune system started letting me down, the illnesses started festering inside of me and I didn’t even know. My grief and loneliness was so intense, I simply wasn’t paying attention to my body. How could I? Dealing with  grief was full time, and occupying all my thoughts.

Four years after the care giving,starting in January 2015, my immune system went into hyperdrive. It was like I was flying through time on a sea of illnesses. Full body inflammation, two heavy duty events with inflamed lungs requiring steroid treatments, shingles, Gastritis with Anemia, which was bleeding of the stomach that led to low red blood cell counts causing fatigue for, half of the year. And on top of that I developed heart trouble and had to carry a little bottle of nitro pills everywhere I went.

Over that dreadful year, my inflammation numbers were high enough to trigger a couple rounds of cancer tests. They didn’t see it but, it was there. In February 2016, I was diagnosed with a significant prostate cancer.

Sometimes giving your loved one everything you’ve got, even though it might not always be enough, the level of stress you’re enduring is probably overwhelming your body’s ability to function normally.  And that leads me to the biggie…The caregivers diet. We may give our patient or loved one what they need in the form of nutrition, but for whatever reason we neglect our own bodies. I guess for me, it was just easier.

Of course, one of the suggested causes of prostate cancer is poor diet. And I certainly had that. Obviously that’s a man’s cancer, but consider this-it’s estimated that 35% of all cancers are caused by poor diet-as stated by Dr. Kathleen M. Stadler, Virginia Tech.  Poor diet does not discriminate between a man or a woman.

The irony is, if we all ate healthy, and lived a healthy lifestyle, 80% of all cancers could be avoided, according to Dr. Stadler.  She’s probably talking about some sort of stress free life inside a bubble, where there are no caregiver duties.  Sort of, a semi-perfect world.

But, if by chance you fit the description of an intense caregiver, where your body is always in motion, or you fall into the category that I defined as Caregiver syndrome, or caregiver stress, you need to become self aware.

You probably can’t stop the train after it leaves the station, but I’ll bet you can slow it down as, I’m doing. I drink plenty of water, have a healthier diet, and walk 1 to 2 miles, 5 days a week. My inflammation is gone, along with other nuisance illnesses. My heart is healthy and stable, and my significant prostate cancer has, so far, made no further advancement since diagnosis. I turned down radical prostate surgery or radiation, for 2 genetic tests and a healthier lifestyle. And I’m so glad I did.  My energy level is elevated and I really do feel well.

After the care giving, don’t let life pass you by. Try to rewind your thought process, get out of the fog, go for walks, have some fun and do whatever it is that your heart desires. I know it’s not easy, but you can do it, if I can.

I wish you all, the best.

www.becauseofannie.com

Grief, Loneliness and the Coke machine

Grief, Loneliness and the Coke machine

Over the past few years I’ve written thousands of words on grief and loneliness. Sadly, I have to say, I’ve never came up with a solution, but instead, ways to cope.

There are things we can do to help ourselves out, if only for a few moments or hours at a time.

In most of my articles on here and before, I said, or made it sound like grief and loneliness was always going to be a 24/7 nightmare. Now, looking back, almost six years later, I’m feeling better, and I can see where that was not quite accurate. But, when in the clutches of grief or loneliness, everything you do will be done in grief or loneliness.  However, sometimes in the moment, unknowingly at the time you, are feeling quite normal in that something you love to do is getting your attention. And for that short period of time, your life is in balance, healing is taking place.

So there were things that I did, that got my undivided attention.  Perhaps inadvertently, but does it really matter, I was creating sanity in an otherwise insane world.

Annie and I had a sincere love for antiques, collectables, vintage items, and just about anything we could buy and sell for a tidy profit.

In a sense, our love of the hunt for little hidden treasures, set me up in ways I didn’t understand at the time. Today, I can look around our home at some of our antiques and they once again create beautiful memories of the hunt, for me.  Sadly when Annie died, they became meaningless, until recently. So there is a light at the end of the tunnel, and you just have to keep pushing forward towards the light any way you can.

In a song that Sheryl Crow sang a few years ago, there were these lyrics. “If it makes you happy, then why the hell are you so sad.” And I think, what that says to me is, there’s times, opportunities, when we have to make a choice. Happy or sad. As you read on, you’ll see how I found a bit of happiness in the middle of a raging storm.

The addiction, the hunt

antique coke machine

In October 2011, one month short of a year after Annie died, I was sitting in my dining room, anguishing over my loss, when the phone rang. It was an elderly Black man with a story to tell.

He had an old 1950’s Coke machine he wanted to sell. At that moment my addiction for the hunt kicked in. He told me where he lived, in an area I knew well,  the “Ghetto.” Despite warnings from two of my Black friends of many years, to stay out of the Ghetto, luckily I never listened. If one is addicted to the hunt, you go where it takes you.

We made arrangements to meet, and when I arrived on his door step, I met a tall elderly gentleman with a wrinkled face, from life’s wear and tear. We exchanged acknowledgements trough a firm handshake.

He walked me around to the back alley, and when he open the garage door, sitting right beside the door was a very desirable 1950’s Round Top Coke machine.

Of course I wanted to know the story behind the machine, but, he brushed my question aside. Instead, he told me a story about how his son got sent to prison for robbery and was serving a lengthy prison sentence. Through his choked up words, it was obvious that he was grieving the loss of his imprisoned son. He said he been talking to his son on the phone and he wanted him to sell the Coke machine, and send him the money for the prison commissary.

I purchased the machine and we loaded it into my truck. I then asked him if I could do anything for him. He said he’d be grateful if I’d take him to the local shop and by him a couple packs of cigarettes.  We made a short drive to a small old convenience store and I purchased him two packs of Newport Menthol cigarettes. Then I drove him back home and we said our goodbye’s. He was a good man, but getting old and tired, seemingly, down on his luck a bit.

When I got it home, my little treasure needed a lot of tinkering to get it running. It made me smile when I pulled the electric cord out of the back of the machine and soon noticed the male plug-in for the wall, was cut off. You see, back in the 50’s/60’s the machines always set outside in front of the old stores. It was typical for someone stealing a machine, to back up to the machine, quickly cut the cord, then push the machine into the back of a truck for a quick getaway.  The machines were usually sold or put in garages to be used for keeping beer cold. The one I purchased was probably never hooked back up, as the cord was original and worn from age.

And here’s where it helps to keep one’s mind occupied. While I was buying or tinkering with the machine, I wasn’t thinking of my loss. It was like a break from a nightmare. I even spent time wondering, and visualizing the garage setting where I found the machine, and what the activity must have been like in the garage. It must have been fun, as the Coke bottle opener on the machine had a large slot with a container to catch Coke bottle caps. It was full of various brands of beer bottle caps.

I tinkered on the machine, on and off for a month or so, until I got tired of messing with it. Too much work. Then decided that when I sold it, I would sell it, as is. From that point on I saw it every day when I went into the garage, but didn’t touch it for at least five months. It just set in place.

My grief was still very strong, but again, unknowingly I was finding ways to break the cycle.

About five months after I got the machine, I decided to sell it on EBAY.

After I sold the machine, I was contacted by the buyer, via email through EBAY. The machines new home would be a small retro restaurant in the Czech Republic. He told me a representative from a Russian shipping company would be contacting me, and make arrangements to come pick it up.

When the Russian arrived in my driveway a few weeks later, believe it or not, he wanted to talk politics. Our election of 2012 was just around the corner. He was now a resident of America, as a few years earlier he managed to get his family out of Russia and to New Jersey. He said he loved living in a free country.

For me, I just wanted to know what he was doing with all those beautiful Antiques in the back of his big white van. Well, they were going to the same man. The Russian explained to me, that in the 50’s and somewhat the 60’s, anything  good, classic or desirable was made in America. And his client was buying as much vintage and retro Americana as he could. The Coke machine represented a classic piece of American History, and the gentleman was buying the best there is and ever will be. Smart man. The value of those old classic round top Coke machines will only increase.

Selling the Coke machine motivated me to start selling some items in my home that were non sentimental. It kept me busy, I was making money, and while doing my thing, I was not being dragged down by grief or loneliness every minute of the day.

My hope is that this little story kept your mind occupied a bit and off what’s troubling you. Also, gave you some ideas on things that you can do to keep your mind busy and not stuck in the darkness.

I do believe we all have a choice with grief and loneliness. We may spend ninety-five  percent of our time in misery, but imagine the possibilities or opportunities we could have if we used the other five percent, doing things that were healing.

Remember, I’m looking back, and not suffering as I did for the first four plus years, and I can see clearly, I wasn’t suffering all the time, and you shouldn’t either. If you don’t have a hobby, perhaps you can find one. Or go to a support group, where you might find yourself trying to help people that may not be worse off than you, but in many cases, you’ll think they are. And helping each other can be healing as well.

Try to stay focused on the light.

I wish you all, the best.


View Annie’s online memorial.

Featured image: Radiokafka / Shutterstock.com

Caregiver narcotic overload chaos “going with the flow”

Caregiver narcotic overload chaos “going with the flow”

As a caregiver for a terminally ill loved one, we have many distinctive roles to play in their well being.

One role might be, “going with the flow.”

Alzheimer’s and dementia are horrible, little understood diseases of the mind. But there are other short term issues of the mind that happen due to medication, that might be confused with either of these.

Well, here’s one of them.  Mind chaos from narcotic overload, full of delusions and psychotic behavior.

When my wife Annie was in the hospital mainlining dialudid, a pain killer several times stronger than morphine, sometimes she’d get delusional to the point she’d actually become combative.

One evening around 10:00 PM while in the hospital, Dr. Tom Moore her infectious disease control doctor stopped by to see how she was doing. He was leaning over chatting to her, when out of the blue she said, he’s trying to kill me.

Dr. Moore looked at her and very calmly said, Annie, Bob loves you and cares for you, he wouldn’t hurt you.

No! He really is trying to kill me, I know it.

What’s he doing to make you feel that way?

He keeps giving me pills, and he’s not supposed to.

I explained to Dr. Moore that I was giving her medication to her at times, but always explained to her why I was giving them to her so she wouldn’t worry.

When I gave Annie her medication, I could see the look in her eyes, searching, wandering why I was giving her the medication and not the nurse. I knew she was delusional, but I couldn’t fix that. What I could fix was make sure she got her medication on time, and worry about the consequences later.

Dr. Moore had a curious look on his face so I told him. You have approximately 40 patients on the cancer ward and too few nurses. They cannot keep up. To keep Annie’s medications from being too late, I chase her nurse down and she runs to the medication room and gets me her pills. And I give them to her.

See!  He just admitted it! He’s giving me pills and trying to kill me.

Dr. Moore got her calmed down a bit, but I don’t think he quite knew what to think. However, I knew he trusted me.

As he was walking out of the room, she said, doctor, doctor, come here. I need to tell you something else.

What’s that, Annie.

Well, there’s some nurses on this floor that have started a petition, and getting all the patients to sign it.  It says that I’m crazy and need to be locked up on the nut ward.

He looked at me with a smile and said to Annie, I will go get that stopped right now. You aren’t crazy.

She liked that, with a smile. And totally calmed down.

It took me awhile, but I learned to go with the flow.  Things would get so bad at times from all the delusions, I’d simply agree with her position on a statement she made, that I really didn’t agree with. It never changed anything, it was simply agreeing with her perception of reality, that in truth, was not reality at all.

One day, she told me that Dr. Moore Sr., her oncologist, just came in and told her she’d be going home soon.

I told her he didn’t come in, if he had I would have seen him.

Immediately I saw the confusion in her eyes and realized, I could do better. I instinctively looked her in the eyes and said, you know what, if you keep getting better, you will go home soon. What I was doing was acknowledging her feelings. She wanted to go home.

Annie was very special to me. Every day I woke up and she was still with me, was always going to be a good day, no matter what the challenges.

Here’s the thing. One can’t argue with a delusional patient. They don’t understand. It really broke my heart seeing Annie get in such a confused state at times. My empathy was always being tested over, how must she be feeling inside and what must she be thinking. I don’t know. 🙁

When she told Dr. Moore the story about the petition, why would she even think of such a story, if she didn’t think something was going on inside her head. She was locked in a world without reason or understanding. I hated that for her.

Annie was dealing with very badly diseased bones, to include the many broken bones she already had, so she needed a strong pain killer. At home she was on 200mg of morphine a day, a Fentanyl patch, and the occasional Percocet. I struggled with pain control a times, but, she didn’t get delusional, and could tell me when she needed a bit more pain medication. We did fine.

Being a caregiver for a loved one under the circumstances as I just described them is more common than we all know, and cause for concern. The loved one can push every button you have, and somehow find a few more. We must understand, their confused and lost, but as in the case with Annie, once off the strong narcotic, things came back into balance.

She woke up one morning in the hospital after coming off the narcotic Iv, looked me in the eyes saying  with a chuckle and smile in her soft English accent, I feel like I’ve been naughty, have I?

No Annie, you’ve been just fine. 🙂

Visit Annie’s online memorial.

Prostate Cancer for Women: the silent killer, facts you need to know for your man

Prostate Cancer for Women: the silent killer, facts you need to know for your man

Prostate cancer is the #1 most common cause of cancer in men worldwide and #2 in the USA. It is estimated that one in every seven men will get it. The exact cause of prostate cancer is unknown.

Here are some of the early warning symptoms, that may or may not be prostate cancer:

  • Burning or pain during urination,
  • Difficulty urinating, or trouble starting and stopping while urinating,
  • More frequent urges to urinate at night,
  • Loss of bladder control,
  • Decreased flow or velocity of urine stream,
  • Blood in urine

Often times when the symptoms show up, it has not been caught early, but perhaps early enough to be treated successfully–All men over 50 need to have their prostate checked and a PSA blood test annually–if a father or brother has had prostate cancer, some studies suggest a man should consider having a PSA test as early as 35 years old.

In an effort to keep this article simple, I’m going to speak about what the man needs to do, and not about all the scientific stuff that’s better off left to the scientists. Science is complicated, what needs to be done to save or prolong a life, is not.

It’s virtually impossible to reach out and touch the lives of many men, warning them of the dangers of this dreadful cancer. Why?  Men like me, don’t want to talk about a disease that is so personal, and private, it need not be made public. Therefore, the voice of reason is silenced.

Most prostate cancer deaths in men occur between the ages of 50 and 60, then jump to 80 and above. Reason being, younger healthy men will not go get screened, it can’t happen to them. So they say. Ignorance is bliss. And that’s basically the attitude I took and why I’m in this mess now. For those over 80, they’ve usually had it for a number of years and it’s run its course.

Through my story, my goal is to help you “safely” keep your prostate in your body as long as you can, if that’s your desire. Treatments, such as surgery and radiation come with some not so good side effects. Two of the main side effects are erectile dysfunction and incontinence.

If you don’t have any concerns from erectile dysfunction, then surgery or radiation in the early stages of the cancer is a good option for you. Cancer can’t hurt you if it’s not there.

bob harrison

That picture is me. The day my life changed forever, again!

What made me go public with my prostate cancer?

Almost six years ago, I watched in horror as my wife Annie lost her battle with a dreadfully painful cancer, multiple myeloma, that left her with many broken and very badly diseased bones.

Once prostate cancer spreads to the bones, Dr. Grant Rine, radiology/oncology, Wichita, Kansas, who was Annie’s radiologist, told me prostate cancer can be like Annie’s. Very painful and debilitating

So, I’ve decided to lay all the cards on the table, and discuss a subject that most men will not. And, I felt like the best way to do that was to reach out to the wife or partner in a man’s life.

This is important information and can save some lives through early detection, not to mention the burden and emotional instability the treatments can place on a patient, and most of the time the effects it has on the woman or partner in a relationship. I will talk about some recent techniques that make the decision on when to have radiation or radical surgery much easier. And discuss the possibility of being over treated, meaning, having treatment too soon, when treatment may not be required for several years. Usually, but not always, prostate cancer grows very slowly.

My story

During a routine physical exam by my family doctor in Jan 2016, he noted that my PSA, a simple blood test that measures the level or a protein called prostate-specific antigen, a part of the screening for prostate cancer, was still elevated at 5.40 ng/ml, and that I needed to go back and see Dr. Byrd, my urologist. I was scheduled for an appointment to see Dr. Byrd on, I believe Jan 21, 2016.

Most insurances and Medicare recognize a PSA score of 4.0, as the standard when action needs to be taken and will be covered by them. Under 4.0 they won’t usually do anything, or pay for anything. Of course, once diagnosed with cancer PSA tests are administered as needed.

On the 21st of Jan, 2016, I saw Dr. Byrd. After chatting with me about my PSA results, he leaned over and got a plastic glove out a box, which was my cue to lower my pants. He then had me lean over the bed and he inserted his finger into my rectum to check my prostate for nodules or any enlargement. To the touch, my prostate was normal.

After the examination he told me that as I had no signs of infection or enlargement of the  prostate, which can raise the PSA levels, so my chances of having prostate cancer were about 35% and it would be wise to get a biopsy and rule it in or out.

There was no hesitation in my voice, as my PSA score had been elevating slowly over the past 3 years, starting in July 2013 when it was 4.20. During that time frame July 2013 to Jan 2016 I had 5 screenings and all were elevated but one, and it was 3.84. So I kind of knew I had prostate cancer.

Those three years that my PSA levels were elevated, I was grieving my wife’s loss and ignored the possibility of cancer. But, I spent a lot of time doing research, reading anything I could on the cancer, to include understanding the treatment options, all the side effects of the treatment, and the biopsy.  Now I would be putting all that knowledge to use.

Feb 3rd, 2016, I had my prostate biopsy. I was not anxious, in fact, I was very calm. The nurse left the room while I stripped down and put a gown on. She then came back in, sat me on a bed and told me that the doctor would be in soon. (Three days prior to the biopsy I was put on antibiotics to help ward off infection.)

When he came in, he had me lay on my left side, with my buttocks extending a fraction over the edge of the bed. He then inserted the Ultrasound probe, which is about the size of a finger into my rectum, for a guided needle biopsy. A needle is inserted through the probe to numb the prostate before the tissue samples of the prostate are taken. Once numb, Dr. Byrd went all around my prostate and took 12 core samples. The procedure took about twenty minutes and although uncomfortable, was not painful. (note: some doctors do the biopsy while the individual is lying on his back or stomach)

After the procedure he told me that I would have some rectal bleeding, especially during bowel movements for a few days, and maybe longer. The blood in my semen can last up to 6 weeks, and some cases 3 to 4 months. All of which is normal.

My rectal bleeding was over in a week or two at the most, and semen was normal in about three weeks.  In the semen the blood is usually a rust color and as it heals, turns brownish. My blood looked like Ketchup for a few days then turned to the rust color.

It’s okay to have intercourse after a biopsy, but studies suggest you wait a couple of days, as the strain may cause more blood in the semen. You’ll know if you’re aggravating your prostate by the color of the blood. It’ll be bright red.

Everything we’ve talked about so far has been relatively benign or straight forward. From this point on, my life got very tricky, dealing with both the known and the unknown. And I have no one to blame but myself. I shouldn’t have let it get this far. Action three or four years ago, a biopsy, would have been wise. I just didn’t understand, but through this article I can get a dialogue started for you and perhaps help you understand.

On 13 Feb, 2016, I went back to Dr. Byrd’s office and received my pathology report. Out of 12 core samples, 6 were malignant. I knew that couldn’t be good.

I essentially have a high volume cancer, meaning, after I have treatment, surgery or radiation the cancer has a high percentage rate of coming back. And therein lies the problem for me. Surgery may or may not help me. Studies show, that a patient with a high volume cancer with over 50% volume, don’t do very well long term. And that’s with or without treatment. My cancer was not caught as early as we first though. Lack of symptoms, or failing to recognize the symptoms caused the problem for me.  (Only about 25% of all men that present with an elevated PSA count have prostate cancer.)

But, my case is rather complicated and confusing as my PSA score would not indicate a high volume of cancer. Still, half of my prostate is cancerous, so it’s likely to be high volume.

Five of the samples were low grade cancer, Gleason score of 6. But one was intermediate grade with a Gleason score of 7. Essentially, I had an intermediate grade cancer due to the 7. And that one sample is what’s causing all the problems.  A Gleason score of 8-10 is a high grade cancer, likely to spread rapidly. The pathologist assigns the Gleason score.

After Dr. Byrd spoke to me for awhile, he gave me a list of treatment options, the two viable ones were, radiation or surgery.

He asked me what I wanted to do.

I told him nothing at the moment, I needed some time to think about it. I asked for three months with active surveillance, and he said okay.

All the literature and research I’ve read says, upon initial diagnosis, unless the cancer is considered high grade, step back, take some time away and do some research on your options.

For whatever reason I was still uncomfortable with the situation as it presented itself. So I said to him, I’m supposed to make a major life changing decision based on this information. Is this it!

He thought about what I said for a minute, then said, there is one thing we can do. A Prolaris Biopsy, but it’s expensive and your insurance might not pay for it. It could be as much as $4,000, or simply a co-pay of $379. He had the nurse run it through my insurance, Medicare-Tricare for Life, and it was covered 100%. I said, let’s do it. He smiled saying, it will be interesting to see just how involved the cancer is.

Prolaris testing is a genetic test of a sample of the biopsy I recently had. If you or a loved one has prostate cancer, check this out, www.prolaris.com  it can guide you on whether you need treatment or if active surveillance is appropriate. Like I said, hold onto your prostate until you need treatment.

To a urologist or doctor, the smart thing to do is get the prostate radiated, or removed. I understand their thinking, but they do not have to live with the side effects of either treatment.

Three months ago at my prostate support group, I watched a 6 month old video, the speaker was one of the top urologists in the country. He was working at Kettering Medical Center, one of the top 3 prostate cancer hospitals in the nation. He said, one of the most difficult challenges for him is seeing all the men that come to him for help. Their sad statement is–why did I have surgery so early, when I probably had several years before needing treatment. According to the urologist, it happens because the men are freaked out by the cancer, and want it out. Of course, the doctors are happy to oblige them, as they want it out too.

Remember what I said earlier. “I’m supposed to make a major life changing decision based on this information.” I couldn’t do it! And you shouldn’t.

After the biopsy, make sure you get a copy of the pathology report, chill, and then request the Prolaris biopsy.  Once that’s done, you can compare the two and if you were leaning towards treatment, radiation or surgery, there’s a 40 to 50 percent chance you will change your mind and choose active surveillance.

March 14th, 2016, I got my Prolaris results back.

It staged my cancer at T1c. Which means it’s still contained within the prostate. And that’s what you want to hear. Outside the prostate would not be good. It also gave me a life expectancy based on my cancer.

Here’s what it said: “This patients 10 year risk of prostate cancer specific mortality is 4% with conservative management. Mortality risks could be altered by various therapeutic interventions.”

In other words, if I go on active surveillance, have a PSA test every 3 months, and a visit with my urologist, that is considered conservative management. If something were to go wrong, the doctor would likely detect it in time to do treatment. Surgery or radiation.

When I left the doctor’s office that day, I was upbeat and feeling good. If I hadn’t pushed for more information, I would never have known about the Prolaris test. And I now knew for sure, I still had  my prostate gland and I wasn’t in any danger at the moment. I would be seeing Dr. Byrd again on May 13th, 2016 with fresh PSA test results.

May 13th, 2016, I walked into Dr. Byrd’s office. We had the usual chat, he examined my prostate again, and told me my PSA score was 4.6, down from 5.40. But, as we knew the cancer was there, it didn’t mean much at the time.

Dr. Byrd asked me what I wanted to do, and I told him I wanted 3 more months. I think it kind of aggravated him a bit as he sharply said, Bob, you’re going to have to deal with this sooner or later, it is not going to go away.

Dr. Byrd was advising me, but not in a way that I didn’t have some wiggle room to make my own decision. In other words, I’m not going against medical advice, I actually agree with him on surgery, but I want more time and information before I make a decision.

Before I left, I told him I’d like to go to Kansas City, and get a prostate specific MRI. Once I had those results, making my decision would be based on everything I could possibly know.

To my amazement, he said we now have the same MRI technology here at the hospital as Kansas City, and training the techs is ongoing.

Since I was due to see him again in mid Aug, we set the MRI up for the first week of August. He said he needed 6 months between the biopsy and MRI, in case the prostate was still inflamed a bit.

August 1st, 2016, I had my prostate specific MRI. (Key words: Prostate Specific) The urologist  would now be able to see the cancer, up close and personal. According to the radiology tech, I was the first patient to have the prostate specific MRI in our area. Which may or may not be true. I was in the tube from 1pm until 2:55 pm. Allegedly, again, according to the tech they took 2,000 pictures. Seemed like a lot to me.

A week later I had my PSA blood work done, with the results being faxed to Dr. Byrd.

August 15th, 2016, I went back to Dr. Byrd’s office with a copy of the CD given to me after the MRI to hand carry to my appointment.

Dr. Byrd went over the written report with me. The good news was, we now had a definitive determination that the cancer had not spread beyond the prostate as my entire pelvic area was clear.  It’s never 100 percent for sure, but it looked good and the best they can do at the moment.

The prostate was basically as he thought it would be. There was one area, the 7, I talked about earlier in this article, that was and is concerning. This is the exact wording on the report. “High clinically significant cancer is likely to be present.” I knew it, but not in those worded terms.

My PSA had dropped again, from 4.60 to 4.30. I asked him why that was happening and he said, to drive me crazy, meaning him.

He went through all the paperwork, then shocked me by saying, if I treat you now, I run the risk of over treating you. He said I could have three more months.

Over treating means, treating me before it was clearly necessary. Dr. Byrd had been trying to get me to have surgery for 6 months at that time, but now that we had all the facts, I probably have a bit more time.

I spoke up, I need four more months. While I was explaining myself to him, his head was leaning over with his eyes closed and his fingers seemed to be massaging his eyes rather roughly. Before he could remove his hands I said, I’ll bring you back some fresh smoked Pacific Wild Salmon from my fishing trip. He laughed, like what am I going to do with this guy.

That was a high five moment for me, but he didn’t know that.

But as I was starting to learn, sometimes when things seem to be too good to be true, they may be.

Aug 26th, 2016, I got a call from Lauren, Dr. Byrd’s nurse, and she said that Dr. Byrd had rescinded my active surveillance program for now. He apparently looked at the CD of the MRI at some point after my appointment and saw something that was troubling to him. So in a group meeting with all the urologists they looked at the CD and the consensus was, I need further genetic testing.

Aug 29th, 2016, another sample of my biopsy was sent off for a decipher biopsy. This is a genetic test they use when a person has already had his prostate removed and the cancer is coming back. It is also useful in determining if my cancer is high grade, and how likely is it to metastasis (spread). This test will tell them if I’m a good candidate for active surveillance or if I need some sort of treatment.

Here’s the thing. I know at some point I’ll need surgery or radiation, and that’s just how it is. But, until all the stars line up, I’m hanging onto my prostate.

Some days, I simply feel like rolling the dice and taking the ten years or whatever I can get, and leave the cancer alone. Then, I flip the coin over and realize, what a selfish, foolish, act that could be to my loved ones. It’s a catch 22, but, ultimately my choice.

On 15 September 2016, and my decipher biopsy came back inconclusive. The lab said they did not have enough information to make a determination. And I don’t know what information their speaking of. I do know the information was resubmitted a few days ago.

What to know

Let me stress a couple of points. Having surgery or radiation can help and perhaps cure you when caught early enough. If you’re in your in your mid 70’s, you might just want to ride out the cancer if it’s low grade as you’ll probably pass of something else.

If you’re in your 60’s or younger, the decision is much tougher. If you don’t have treatment you’ll probably die from the cancer over an extended period of time, and you might not. But if you have the genetic testing, and are a candidate for active surveillance, you can get on with your life and see your urologist every 3 months for a PSA. And even if you don’t get the genetic testing, low grade prostate cancer often does qualify for active surveillance.

If you are in your mid 50’s/60’s and diagnosed with prostate cancer, take the time to research the disease, before you pull the trigger on surgery or radiation treatment. Considerations to the side effects need to be thought out. There’s many, but erectile dysfunction and incontinence are the most common. If you’re married or have a partner, you really need to have that awkward discussion with them too. Many of the leading urologist recommend keeping your prostate as long as you safely can through active surveillance, avoiding the side effects as long as possible, ultimately, the decision lies with you and your urologist or oncologist.

What I’m saying is this. If you have a low grade, low volume cancer, which most are, Gleason score of 6, you may not need treatment for many years. That’s a big deal to a happy couple with an active sex life. Psychologically, to a man that loses his manhood, it can be devastating. Counseling is often times recommended.

But, if you do need to have surgery, make sure your urologist/oncologist know how you feel about erectile dysfunction, and that they practice nerve sparing surgery. If the nerves are spared, and sometimes they can be, there’s a good chance the little blue pill will get you where you want to be. Without the nerves, well, if your under 60 they can grow back in two years, but the literature says, by then, the man is usually so messed up, well, as they say, you’re only as good as your last erection.

Reality is, saving a life is what’s import in the final analysis. But, the side effects have to be considered by all concerned.

When I get my results back from the decipher biopsy I will post them in a part 2 blog. Same title.

Grief & Loneliness: Rescued by a Feral Cat

Grief & Loneliness: Rescued by a Feral Cat

June 9th, 2012, while sitting on the steps outside my back door, having what many folks would call a pity party over the loss of my wife Annie, two years previously, I discovered a little treasure in the rough.

When you’re alone, grieving, lonely, it’s rather easy to get lost in the outside darkness. Tears are flowing, questions, those ever present nagging questions are filtering in and out of your consciousness, with no resolution in sight.

When seemingly all hope was lost, I got a sign that perhaps everything was going to be okay. In the distant and dark shadows of my back yard, behind the rows of English Boxwood Hedges, Annie had planted years earlier, there came a faint cry. “Meow,” “Meow.”

I couldn’t see anything, so I stood up and turned on the security lighting. In the distance I could see what looked like two little bright sparkling eyes. Again I heard it’s little cries, “Meow,” “Meow.” Instinctively I did what seemed to come so natural, as if I’d been doing it all my life. But I hadn’t.

Here kitty, kitty. Come-on kitty, come-on. Kitty, kitty, come-on. And just as fast as the kitty appeared, it disappeared, most likely in the thick foliage that surrounds the yard. My anticipation of what was to come, was dashed away in the darkness. I sat back down, and once again fell into my misery.

When the tears are flowing, let them flow. That’s healing.

About twenty minutes later, I was sitting with my arms across my raised knees, and my head laying on my arms, while my mind wandered in the darkness. Unexpectedly, I heard the little cry again, “Meow.” This time it was only a few feet to my right, in the darkness. The cat had walked about one-hundred feet across the yard, in front of me hidden in the foliage, for I guess, a surprise visit. Just maybe, the cat was wandering in the darkness too.

I sensed that this was going to be a special encounter, but no amount of reasoning at the time could have prepared me for what was to come, and the comfort of knowing I had a friend. Yes, I had many friends, and they all wanted to help me get better, but they couldn’t help me. I think I needed a little cat, raw, wild, and full of spunky spirit.

Honestly, I couldn’t believe my luck, as at that moment in time, I desperately needed a friend. And I didn’t care if it had four legs. I tried many times to communicate with it, to no avail. And while doing so, the cat appeared to be cautiously busy setting the boundaries, and I knew I had to give it space.

I got up and walked to the kitchen, thinking it was hungry. Wasn’t sure what to do, as I had no cat food. So I put a small portion of smoked turkey in a small bowl, with a bit of cheese and sat in on the step. As I backed away, the cat came over, took a sniff, and looked up at me like, “is that all you got.” It “kinda” was.

Over a period of time, maybe 30 minutes or so, it stayed and I talked to it. It was becoming apparent that this was no normal cat, as it was very shy, kept good eye contact, and seemed to react to every movement I made. It was ready to bolt, but at the same time, curious enough to stay.  Eventually it walked away into the night, leaving me wondering if I’d see it again.

But, for that moment in time, it got my mind going in a different direction. I was now looking forward to tomorrow night, living on hope, that I could entice the cat to be my friend with some fancy cat treats.

Once again, the cat used stealth to sneak up to the bowl, took a sniff, then backed away. Why? That was supposedly the best food on the market. I was confused, but still felt very fortunate at the prospect of having a little friend. It gave me something to look forward too, and presented some challenges that at times, pulled me out of the darkness, with short bursts of amazement and wonder.

Always remember, to a griever, darkness can be present twenty-four hours a day, but over time it can start to ebb and flow, a good indication that some healing it taking place.

The second night when the cat came around, I managed to get a picture of it. The picture was posted on my facebook page, with a short story about the cat. It was immediately identified as a feral cat by some of my friends, and I quickly got the idea that I, indeed was not dealing with an ordinary house cat.

But, rather than let my, not knowing what to do thoughts drive me crazy, I went to the internet and researched feral cats. The first cat I saw looked exactly like the cat in my yard, same color and black stripe down it’s back.

My thinking was, that if I could understand the nature of the cat it would make a big difference. It didn’t! I was learning that no two cat have the same traits, and that feral cats are in a league of their own. My idea of having a pet cat was so far from reality, looking back, it makes me laugh. The cat dictated, and all I could do was give it space. No touching.

“Alley Cat Allies” gives this definition of a feral cat: “A feral cat is a cat who has either never had any contact with humans or her contact with humans has diminished over time. She is fearful of people and survives on her own outdoors. A feral cat is not likely to ever become a lap cat or enjoy living indoors.”

By understanding the cat, I was led to a much cheaper market brand of cat food, “Meow Mix.”  The cat loved it, and it had the necessary nutritional content. That was the first thing I got right thus far. But I was learning.

When you think about how the cat lived, why would it eat fancy cat food. It was living off the land and eating in, whatever form the food took on. It probably ate mostly field mice, small birds, and literally garbage.

My facebook friends were telling me to take it to the vet, get its shots, and have it fixed. I tried, but unless you’ve been around a feral cat, you couldn’t know that their impossible to catch if they don’t want to be caught. They will bit and scratch you if you try to pick one up that does not want to be held. I couldn’t get more than five feet in front of her, before she backed away. I don’t think she was afraid, but being born in the wild, where danger can lurk around every corner, she spooked very easily, and being touched or held was not in her comfort zone. The cat seemed to be locked into the fight or flight response mode, to any perceived threat.

Within a few days of meeting the cat, I wanted to give it a name, but couldn’t tell is it was a girl or a boy. So I did the only thing I could do.  Remembering the old Crocodile Dundee movie, and that special scene, I named the cat Sheila…Just in case it was a girl.

Sheila, I assumed was a girl cat as she was very complicated. Tom cats would come around and Sheila would literally go nuts on them. Not physically fight them, she’d scream so loud, they’d run away. She was little, but they didn’t stand a chance. After all, the world she survived in was full of darkness, and as I learned a few months later, she’d attack Rocky the Raccoon if it got in her bowl of food. In fact, one night in the early morning hours I heard her screaming. I ran to the back door to see her sitting on one side of her bowl and Rocky the Raccoon on the other. She was screaming and slapping the heck out of Rocky, but apparently he didn’t care. Sheila was lucky that night, as Rocky could have hurt her bad if he’d wanted to. But I guess, recognizing she was young, couldn’t be bothered. Peter the Opossum didn’t have a chance as she was way too quick for him. Now, if Polly the skunk wanted her food, not even I could stop that.

When I said that Sheila was probably a girl as she was complicated, here’s what I meant. My wife Annie would tell me to pop over to Kohl’s and grab a pair of new pants for a gathering of some sort. A few minute later  she’d say, hang on a minute, let me get cleaned up and I’ll come with you…I need a new Bra. If I was lucky, she’d be showered, dressed, had her hair done and make up on within an hour. But things had just got complicated. She needed a new bra, but also, apparently, needed new tights, skirt, shirt, purse, make-up, shoes and the list goes on and on. I simply wanted a pair of pants. I’d have been in and out in a few minutes. A few hours later we’d make it home, and I’d be too emotionally drained to cut my grass. Now that, is complicated. (Annie died over 5 years ago, and if I could spend the rest of my life shopping with her, in a soft voice, “I would love to.”)

As of June 9th of this year, Sheila has been with me, 4 years. She is still a very strange cat, but now depends on me for her food. Other than that, she is in control of her own destiny. She sleeps in the garage some nights, in boxes, on old pieces of furniture, or where ever. I bought her a nice cat bed a few years ago, but it’s in the garage just collecting dust. She don’t like it. Same with her garage litter box. She’ll use it only in emergencies, and sometimes she will leave me a little gift in the garage beside the litter box, even though it is clean. She likes doing her business outside, I guess where she can get down and dirty.

Sheila and I are very close, and look out for each other. I can’t say I love the cat, because it’s impossible to love a feral cat. They won’t let you. But, I do love the way she does her own thing, and doesn’t worry about much, just herself. As long as I open the door for her, which runs at an angle through the dining room to the inside garage door, and have her food ready and sitting on the inside garage step when she wants it, our lives remains in balance. I can pick her up for about 10 seconds, then she starts squirming and wants down. When I’m sitting in my chair watching television or working on the computer, she’ll jump up in my lap, and is gone just as quickly. She doesn’t know how to love, but, I think she tries. She’s so bold outside, but when in the house for a few minutes, she’s afraid of her own shadow. I guess she feels out of her element. One more thing, she doesn’t purr. Probably because she won’t hang around long enough for one to love on her. But, that is just a guess.

Sheila has been a real blessing to me in many ways. In the night, sometimes I’ll hear her screaming, knowing she has encountered a critter, I go running out back, and pick up my prepositioned shovel, and slap it on the concrete a few times while yelling, “get out of here.” It sounds crazy, but as I can’t see her in the darkness and don’t know what she’s up against, I scare everything off, including her. The night goes silent, and once again I know she’s safe.

Sometimes during the day, one minute I’ll see a squirrel sitting on a limb barking at her, and the next minute she’s racing up the tree after the squirrel. It’s second nature to her. She can go as high as she wants, and when she comes down, she’s like a big cat from Africa, watching her is majestic. Absolutely no fear of heights. I spend a lot of time in awe, watching the cat play.

When she is on one side of the yard, and something gets her attention on the other side, she runs across the yard in leaps and bounds, and when she gets to the Boxwoods, their about 3 feet tall, she simply leaps over them in full stride.

She plays outside all the time. But will not play with me. You know, dragging the string across the floor, or waving things in front of her face, it all just seems to annoy her. She simply ignores, and moves away. Outside, she’s so fast that if mosquito’s or flies are bothering her, she can catch them. Occasionally a field mouse will wonder onto her turf. Before the mouse even knows what’s going on, she’s got it. Here’s what’s weird. She will no longer kill the field mouse. She just plays with it until she gets bored. Keeps letting it go and then catching it again. My thoughts are, she knows where her food is, and it’s always there so, she doesn’t need to kill. She won’t even kill little birds, just slaps them about. And I think that’s sad, as I’ve inadvertently taken one of her important instincts away…Her ability to survive in the wild without me. If I were not here, I believe she’d adapt, but I don’t know that for sure, and it’d take some time.

It seemed to me, looking back on the dark days, I was drowning in grief, and it appeared the whole world was collapsing in on my head. That is, until, “I was rescued by a feral cat.” And believe me, it was a blessing.

Here’s the kicker to the story and it might just make you smile. Six months ago my daughter Melissa was at my home and looking at Sheila, who was laying on the patio washing herself. She loves being clean and will have a wash before she leaves the garage to go outside or before she comes back in.  She said, “Dad, who told you Sheila was a girl cat?” All I could say is that, I just assumed she was a girl cat, as she had a bunch of nipples. As I found out from my daughter, boy cats have a bunch of nipples too. Well, as it turns out, Sheila may be complicated but, she is actually a boy cat, just like on Crocodile Dundee. She is not a Sheila at all, but what a great name for a strange but beautiful cat. And apparently, boys can be complicated too. I didn’t know that. 🙂

Who would have thought that a feral cat, so different and strange to everything I’d ever known, would play such an instrumental role in helping me through my journey with grief. I’ve always said, if a griever can just steal a few minutes a day, where there not thinking of their loss, that’s a good day. Feral cats, or a pet can do that. I suspect a loving puppy would also be a good, in the moment, grief buster. Rescue one, and in turn you just may be rescued too.

The metaphor: A portrait of a gatekeeper of love

The metaphor: A portrait of a gatekeeper of love

Annie lived and died in laughter. She was such a bright light for others fighting cancer, and struggling just to get through another day. She brought to them an un-feathered love, full of joy and inspiration.

She was the gatekeeper of love for many people she saw pass through the gate to the other side. She loved them all, and came to know many of them personally. That was a burden she had to carry and she carried it well.

Gatekeeper of love

One afternoon, not long into her illness, we were at the lab in the cancer center. Annie was in her wheelchair and I, by her side. I was looking down the hallway behind Annie, and saw this tall, sandy blonde haired, very well dressed gentleman that I recognized as a youngish doctor from Dallas, Texas, coming our way. He put his finger up to his lips, letting me know not to say anything. I didn’t, as seeing the look on his face told me why he was there. He walked up behind Annie, gently put his arms around her from behind, and as she slowly turned her head to look over her right shoulder, his face came into focus, their eyes connected with these softly spoken words, “My Mom died yesterday.”

Annie let out an audible choked up noise, and started weeping. He held onto her for a bit, knowing how much Annie loved and cared for his mom. It appeared, for that moment in time, Annie was still alive and perhaps a reflection of his mom, which created a method of keeping him emotionally connected while she opened the gatekeepers gate of love and let “Mom” through to the other side.

Then there was Tracey, a youthful 53 year old beautiful lady with so much life to live, now sick and caught up in the ugly, unforgiving world of cancer. When Annie and her met, she was also fighting a blood cancer, one that I knew she wasn’t going to survive…It simply was not responding to treatment.

What a blast, Annie and Tracey had when they were together at the cancer center…So full of fun and laughter. Tracey had a red vintage convertible, that was not getting much use due to her cancer. But in their free spirited imaginations, Tracey and Annie were traveling across the country, sometimes they’d go to Mexico and do some silly and  naughty things. Sort of like the movie from 1991, Thelma and Louise.  And you know what, I was never included in their journeys, and I didn’t even care. When they locked themselves into a world where there was no cancer, they didn’t need a chaperone. They just needed to live the only way they could, in a pretend world, “where dreams do come true.”

Several months into her journey, Annie was at the center getting her blood drawn by nurse Romie. A very large, young, African American Lady that could light up your world with her smile and deep laughter.  Her and Annie were like two peas in a pod. Sadly, when Annie asked her if she’d seen Tracey lately, the silence, became chaos. With a pause, Romie spoke words she’d rather not have had to say to Annie. Sorry Annie, Tracey passed away a few days ago. That was another challenging and sad moment for Annie.

But there were no tears, as Annie had met death head on, on several occasions over the first few months of her journey with her own illness. She knew what to do, the only thing she could do…Open the gatekeepers gate of love, for her dear friend Tracy to pass through.

Helping & inspiring

Some folks say everything happens for a reason and some say, that’s not true. Whatever the truth is, Annie had an uncanny ability to connect with other patients at the cancer center, and it sure seemed like she was there for a reason, beyond cancer…Helping and inspiring others through their own personal journey, cannot be understated.

One would think, with a prognosis of only 3 to 4 weeks, that would have stopped Annie in her tracks. Not so! She reached out to every person she could connect with in the center. Always caringly loving them with her gentle smile and kind ways.

She’d say to me, “I want to help those less fortunate than me.” I did try to reconcile those words, but it was difficult. I once said to her in a soft voice, “Annie, how can anyone be less fortunate than you.” Somehow, Annie knew, she was going to see many folks that she cared for, die before her. And she did.

In Annie’s 5th month of fighting cancer, she was over 4 months past what science said would be her expiration date. Many of those patients knew that, and seeing her gracefully plow through each day, inspired them. She gave them hope for another day. It wasn’t uncommon to walk into the cancer center and overhearing nurse Jenny, speaking to a patient about “their little miracle girl.” Here’s the deal…Annie didn’t inspire people by living, she inspired people by continually beating the odds, cheating death, and not dying. The patients in the cancer center were already living, and I think seeing Annie, beaten and battered at times, inspired them to keep going.

Annie took me on an amazing journey, one of discovery of oneself. Always loving and teaching me things from her perspective…Things I couldn’t possibly know, or without her, understand. She was speaking, not just for herself, but all cancer patients and others fighting a terminal illness. She taught me the meaning of love, very deep, unselfish, and forgiving — to hope, when there was no hope, and to laugh in the face of adversity.

Annie was a proud lady, in a nice way, and not about to let cancer beat her down, body, mind, and soul. So she used the only weapons she had to fight with, ones she mastered as a child, “her ability to live, laugh, and love,” sometimes against all odds.

Annie has been gone for 5 years now, and I can say this without prejudice, she was a rare person, in rare form, bringing hope, laughter, and love to the lives of those fortunate enough to have been touched by her.

I noticed something during Annie’s thirty month journey with cancer — over a hundred days on the cancer ward in the hospital, and all the visits to the cancer center. Everyone seems to be living in the moment, a moment where strong friendships are forged, and only broken when a life is snuffed out.

I honestly believe, some of the friendships would have lasted and flourished forever if, allowed to do so. And quite possibly, Tracy would have stolen Annie from time to time, and they’d be wearing the tires off the vintage red convertible as they trekked across the country, just like, “Thelma and Louise.
annie

I noted in this article that Annie was given a 3 to 4 week prognosis. The third week post prognosis, both Annie’s femurs broke, her right hip joint broke off, and her spine collapsed. She had tumors up and down her spine and many in her hips. Cancer lesions were peppered over her skull. That was consistent with end stage multiple myeloma. The doctors had a grim outlook for her, but, told me if they could get her through high risk surgery mending the broken bones and the chemo started killing the cancer, there was a chance she would live a bit longer. Try to imagine that scenario.

The picture was taken less than 4 weeks after her bones broke on 16 July 08. I know that because Annie was once again admitted to the hospital, cancer ward, 15 Aug 08, in a coma. Again, the odds were stacked against her, and her narrow escape became a testament to her tenacious fighting spirit and will to live. Putting meaning to the term “Their little miracle girl.”

In the picture, she’d just held onto the round oak table and completed the circle around it.  She was showing off a bit by raising her right leg slightly. She had to be careful as her right hip joint and femur were wired in place to the hip.  Her bones were too badly diseased from cancer for a proper repair or hip replacement.

I’m sure it’s easy to see why she was so inspirational to others in the world of cancer, but she was so much more than that. She was a beautiful person, that meant the world to an unsuspecting stranger on the street, or the little old lady sitting in the corner in a winged back chair crying, because she was being placed in a nursing home. Annie shed tears for her, for others, and sometimes for the world.

I wish you all, the best. “Because of Annie

Caregiver grief & loneliness

Caregiver grief & loneliness

On 28 December 2015 I posted Grief: a silent killer. In the article I discussed caregiving, grief, stress and the role they play in our long term well being. After reading over one hundred-fifty comments to the blog on the Caregiver Space Facebook page, I saw an alarming issue that I failed to address, and it’s a key ingredient to the others when caregiving, grieving, or after the grief.

Loneliness

Caregiving can create a strong sense of loneliness, as folks, often friends and family just seem to disappear into thin air.  That’s compounded by the fact that sometimes communication with our loved one can be very limited due to the nature of the disease or illness.  In other words, there may be no communication for lengthy periods of time.

When I was caring for my wife Annie, due to her low immunity we could go several days without a visitor of any sort.  And the fact that she was on high dose narcotics didn’t help matters any as, she slept much of the time.  

What made matters even worse, was that Annie, although very ill was lonely too.  It’s can be a real oxymoron.  People can be a nuisance at times, when they come into your home and all they want to talk about is their problems, especially to a woman that is in her hospital bed dying of cancer.  But being desperate, loneliness often wants them there anyway.  Company becomes company, and the conversation, no matter what it is, becomes fresh and new, with a new voice. Sometimes the new voice takes the patient or loved ones mind off their own illness, and that’s a good thing.   

It seems to me, what it boils down to is communication.  I wasn’t very good at communicating to friends and family that we could sure use some company.  Instead, I just wondered why not many people stopped by.  It’s tough.  There were times when people did stop by and Annie had very low immunity, the new rules, as laid down by her oncologist, had changed the rules on the playing field.  I wasn’t allowed to let any person, especially children, near her over the fear of her catching a germ which could lead to a very serious, and in-fact fatal infection. So I had to turn them away. So as you can see, loneliness is a big part of caregiveing, and can happen through no fault of anyone, or the fault of everyone and everything.  Sometimes, loneliness simply gets lost in translation.   

Grief also creates a strong sense of loneliness, and can lead to a lot of solitude. On the other hand we may be surrounded by people, but we’re still lonely over our loss. In essence grief and loneliness go hand in hand. It’s the double edged sword effect.

When one grieves over a loss, there can be a strong sense of isolation, and in that instance the isolation creates the loneliness.  And I might add, the loneliness felt from feeling isolated is a real problem and can cause mental health issues.

I saw Dr. Bryant, my psychologist, the evening of 30 December 2015.  He said to me, “my biggest concern at the moment is dealing with your loneliness.”  He said it can create instability in a person, depression, anxiety and escalate to a whole sundry of other problems, which perpetuates being lonely.  Many of the illnesses I went through in 2015, probably used loneliness as a contributing factor.

From his words, loneliness is not to be trifled with, and can make you sick over time.  Having said that, a full recovery is possible when and if the loneliness dissipates.

Metaphor

When I was 20 years old I joined the Air Force.  After basic training and technical school I was sent to England for 3 years.  The first six months in England, even though I worked most days and made many new friends, I felt like I was the loneliest guy on the planet.  Over time, I think the cycle broke rather naturally as I accepted my fate. I was going to be there for 3 years whether I liked it or not, so I might as well spend my time having some fun.  So I did!  Eventually, I felt less lonely with my military buddies than, I had at any point in my life.

The truth

In the metaphor the loneliness was real, but there was always going to be a fix. After all, I had a maximum time limit of 3 years to the loneliness, then I’d be going home, and I could always see the light at the end of the tunnel.  

Losing a loved one is the real deal.  There is no time limit on anything to do with grief or the loneliness, and at the time not much hope either.  And there is no magic wand to wave and make things better.  

The dynamics of grief is such that we can literally bury ourselves in our own sorrow, cutting ourselves off from the outside world, and our family and friends.  In doing so, we inadvertently create circumstances that will fester, and develop into full blown loneliness, during and after the grief.

Understanding that loneliness and stress are bits and pieces of grief, one needs to take grief very seriously. When mixing the three together, the grief can become very intense over a short period of time, and in the case of elderly couples it can lead to extreme grief which develops into the broken heart syndrome. In a research study over a 9 year period of over 373,189 elderly U.S. couples, by Nicholas A. Christakis of Harvard, and Felix Elwert of the University of Wisconsin, it was noted that in 18 percent of surviving male spouses and 13 percent of surviving female spouses died not long after their other half, from sudden death due to all causes.  So if you lose and elderly parent, and the other parent is alive, pay attention to them. Help them through their loss if you can.

Personally, I despise being lonely.  But it’s my burden to carry and I carry it every day, where ever I go. My life has turned into a 4 step program. First there was Caregiving, then the grief and stress, now loneliness. That’s a lot for me or anyone else to deal with.  It’s like being caught in a shadow world where one minute you can see your shadow and the next minute you can’t. Meaning, we walk out of the house with good intentions thinking we have it all figured out, then soon realize, we don’t. It’s just another illusion of happiness. It’s really tough to have anything other than spurts of happiness when your lonely.

Another point I should make is that loneliness is kind of like grief, in that it allows us to make poor decisions. Perhaps, we might do things we wouldn’t normally do for a fleeting moment of self gratification.  For example, buying a new expensive feel good toy that elevates our spirits for the moment, but when we get home we think, how silly, I don’t want, or will never use that toy. And the beat goes on.

How do we get out of loneliness

I say we, because I’m stuck in the loneliest period of my life as I write this article. Yes, I could go out and meet someone, but I’m smarter than that.  Loneliness is very deceptive. I could one day get over the loneliness, and wake up one morning with someone that I don’t want to be with, or perhaps, I don’t get over the loneliness quick enough, and she decides she’s made a bad decision and leaves me. Either way, someone often gets hurt.

What I think I’m going to do is, get more involved with volunteer work, which will get me out into the community and help me start meeting new people, and doing some things that I might not necessarily want to do, but in order to break the cycle of loneliness, I need to do. I really have no other answers, or options that I know of. I’ve been told, yoga and meditation are helpful, but I’m not that guy. I know this, being around family and grandkids provides some comfort from the storm, but are not the answer. The answer lies from deep within me, and I just have to dive in and pull it out.

This has to be my year, and I’m going to get better and break the cycle of loneliness, no matter what it takes. I know, I’ll stumble, maybe fall a few times, but each time I do I’ll get right back up, dust myself off and try again.  

When I was in the 7th grade, and at a school dance, I was so afraid to ask a girl to dance with me, in case she said no. But I did it, and after I got turned down a couple times, I became more determined than ever to get a dance. Then fate intervened, and this cute little  popular girl named Bonnie, walked up to me and asked me if I’d dance with her. I couldn’t believe my luck.

One thing I know for sure.  Sitting around in this house day after day is not going to break the cycle of loneliness, or change my luck, but it could break me if I don’t get that dance.  

And sometimes, despite all we do to break the cycle of loneliness, we still need a little help. So, as I sort of did at the dance, put yourself out there and just maybe fate will do the rest. It’s not going to be easy, but you can do it, and so can I.

My fear is, if we fail, the consequences could be dire.

I wish you the best!  

bob@thecaregiverspace.org

Caregivers for a nation, US military, 4th of July tribute

Caregivers for a nation, US military, 4th of July tribute

This article was written to honor our active duty military members during this 4th Of July, 2016, Independence Day.  It’s something I’ve wanted to do for quite some time. Honoring our active duty armed forces and the extreme measures they take to keep this country safe. In some of this article, I will be using my first tour of duty in the US Air Force as an example of how it was for me and a metaphor, for how it could be for some of our current active duty members today.

The United States Military is rather secret, by design, and I for one, no longer know the depth of the threats they face on a daily basis. We all know about the danger ISIS and the different terrorist groups pose, but there is no doubt, something much more sinister is out there, that perhaps goes beyond our imagination, as the Cold War did for most folks from, 1947 to 1991, when the Cold War ended.

The last few paragraphs of this article will open your eyes to the world, a world full of danger, that at any moment in time could have easily gone up in flames. But it didn’t then and won’t now, because, we have the best caregivers on earth.

Looking at what I think is an interesting and intriguing concept — is it possible that our active duty military members are the caregivers for a nation? Of course, military caregivers are normally defined as family members or friends, and other entities, that take care of our wounded warriors.

However, thinking outside the box, if the United States is one nation under God, and through caring for, or love of country, the military insures the safety of the nation, why would they not be, caregivers for a nation.

If you’ve never been in the military, I don’t expect you to truly understand how tough the military way of life was, or is. And if you’ve never been a caregiver for a loved one, you really don’t know how tough that can be either. There’s a parallel here, being drawn between a caregiver for a loved one and a caregiver for a nation. Let’s see where it goes.

I’ve said it many times before, for the most part a caregiver is a special person with some unique qualities, some people don’t have. In my opinion, in the big scheme of things, a soldier falls into that category too.

When you read through this article, there are many places where you could insert the word, “Caregiver.”  For example–much of the military works long hard hours in some awful conditions, don’t get much rest, and deal with lots of stress.  That sounds like a caregiver to me.

Take it from me a twenty-four year veteran, that thanks to our active duty armed forces, we can enjoy a restful night’s sleep, and tune out all the planning and scheming going on against this country around the world, knowing our armed forces are ready at a moment’s notice to protect, defend, secure our country, while honoring our flag, and way of life (freedom).

But make no mistake, as our military shrinks and it is shrinking, our adversaries will become more empowered and the threat to this nation will rise, in most cases through “Lone Wolf” scenarios, which are intended to create panic, casualties, and chaos. Unfortunately, due to the locations and perhaps nature of the attacks, they lie outside the jurisdiction of the military.

The real tragedy for our military is, as it was during the Vietnam war, politics get in the way, and often times the military are not asked to do what needs to be done to defeat an enemy, for political reasons. And are sometimes asked to do things that shouldn’t be done, for the same reason. Not taking a side here, it’s been that way for many years. Ultimately, the Commander in Chief of the Military is the President of The United States, and we follow his orders. (As caregivers for a loved one we also follow orders, but it’s usually from the doctors and some of the medical field. And although they may not always be right, we usually don’t second guess them and do as we’re told.)

My theory is that, The United States Armed forces are indeed, “The Caregivers For a Nation.” That might seem like a stretch to some, but hopefully this article will open your eyes to the perils that face and have faced this country for years, and part of the reason there has been not been another world war.

This is a short story, my story, and why I believe, once upon a time I was also a caregiver for a nation.

The Air Force

In August of 1968, I was 20 years old and just completed Air Force Technical School at Lackland Air Force Base in San Antonio, Texas. I was now an Air Policeman, known today as the Security Forces.

From there I would be traveling to a far away land, so far from my home, I didn’t think the telephone lines would even reach me. I was very naive and entering a strange new world, that would be full of twists and turns, with some new adventures along the way.

September 2, 1968, I was flown to McGuire A.F.B., New Jersey, to prepare for my flight across the pond (Atlantic Ocean). As I made my way to the departure lounge, I met five other young men in uniform, preparing for the same flight. As we chatted, it became apparent we were all going to the same place–RAF Lakenheath, England. Around 6:00 P.M. the large jet was loaded and ready for departure.

The Aircraft was a large chartered Boeing 707, full of military members and their families making their way to England and the Continent.

It would have been in the morning hours of Sept 3rd, 1968, when we went on final approach to RAF Mildenhall, England. I still remember the patchwork quilt designed landscape from all the farming and eventually started seeing quaint old 18th century churches, buildings, and some other structures. The folks staying in England got off at RAF Mildenhall and were bused to their various bases, while the rest flew on to Germany.

It was exciting being in England especially, as I remember we were told during training to take it serious, as we’d all be going to Vietnam. As it turned out, all but three of my approximately seventy-five classmates did go direct duty to Vietnam. But the need came up for one person in my class to go to England, while two went to Germany. Knowing what I know now, meeting the girl of my dreams, getting married to Annie, and being her caregiver through to her death, fate must have intervened. As against the odds, I was selected to go to England and the rest is history.

The first two or three weeks while I was in training, I worked some detail duty and had to learn the customs and courtesies of a strange new country, and importantly, to respect the Queen and Royal Family. As a member of the Air Police Squadron, we were often the first airmen an English person saw when they entered the instillation. Therefore, we were considered Ambassador’s to the United States, and had to behave accordingly. Not much has changed from then and now.

Being in a new and foreign country, for any of our active duty military members, will create a long list of firsts. Here’s one of mine: One day I was standing guard (detail duty) over several English contract workers in a restricted area, while they dug a trench for some sort of pipe-line. They were all wearing quaint little flat top stylish hats, sports coats and some had on a tie. I couldn’t help but notice how soiled the clothing was from the hard work they were doing. Of course, my curiosity got the best of me and I asked the question…Why would you wear a coat and tie to dig a trench? In a very soft, friendly and kind voice, an elderly gentleman with a big smile said, we do it to honor our Queen.  Wow, sort of blew me away. I was in awe of their total and loyal respect for their Queen. That was indeed a first for me.

We were also told that if we had contact with any foreign nationals from a communist country we were to go straight to our boss and report it. Literally! During the first six months me, and a friend hitchhiked to Cambridge, to go see the university, and maybe meet a young lady or two. We didn’t know what to expect.  We were walking across the school grounds and spotted two lovely young ladies sitting on the grass chatting, back and forth. Naturally, we walked over and introduced ourselves, thinking they were English. After chatting for awhile, I started noticing that the girls had a distinct accent. I thought, that perhaps they were from another part of England, as there are different accents in England, just like in this country.  So when I asked them where they were from, and one of them said Poland, we had to get up, and get away from them as fast as we could. Then hitchhike back to the base and report the contact.

I know it may not make much sense to you, but there were a lot of communist spies in England at the time, and we were trained to be mindful of pretty young foreign girls, as they were looking for bits and pieces of information for a much larger puzzle they could put together. Apparently, like out of a James Bond movie, they were attracted to young American soldiers and would do whatever it took to establish a relationship and get any useful information they could. Hanging out with the enemy was paramount to treason, and dealt with swiftly and severely. Good for a one way ticket to Leavenworth, KS, Federal Prison. And turning ones head to temptation required good order and discipline. Some had it and apparently some didn’t. Fortunately me and my buddy did the right thing. (I’m sure that’s an issue for the military in today’s world too.)

To our benefit, WWII was still in the conversation, and as “Yanks” or “Americans,” (we were called both) we were looked on with favor. The locals were very appreciative of the partnership we had with England, during and after the war.

When I first started to work, it would have been early October of ’68. I was placed in a position that came with a huge amount of responsibility; considering my supervisor informed me, I was a “Jeep,” meaning, I was new, I was an idiot, didn’t know a thing about anything, and basically told not to offer up my opinion to anyone, unless it was asked for. The military was very harsh back then. The bosses dictated, and we did as we were told. The consequences for not following orders weren’t good. (This was also, kind of how I was treated when I started care giving for Annie. Strange how life can repeat itself.)

One of my first jobs was walking the mounds on top of the bunkers in the special weapons storage area. It was basically a 50 to 75 yard walk, back and forth for the whole shift. Looking down from where I walked was a short paved road, with blast doors to the bunkers all along the stretch of road. Above the doorways was more mounds, and another walker on top, walking over the bunkers on the other side of the road. The idea behind having two guards was–we could keep an eye on the surrounding terrain, all the blast doors to the bunkers on each side of the road and on each other, too. Any time there was special weapons involved, it required the two man concept. No lone individual could ever be near a special weapon, under any circumstances. If caught near a special weapon or trying to damage a special weapon and refusing the guards orders to retreat or move away, our orders were to shoot to kill.

When on post, a walker was not allowed to talk to any other guard walking near him, unless it was in an official and necessary capacity. Excuses for violating the rule were not accepted. Your buddy while in the barracks could literally be 30 feet away from you while on guard duty, and you did not converse. The powers to be had a theory, inattention to detail while in the proximity of special weapons would be catastrophic. Technically, they were right.

The first 6 months, the winter months, it was cold and downright miserable to be a “walker.” Whether it was walking the mounds or walking around an airplane or a few airplanes for 9 to 12 hours, which sometimes turned into 18 hours, was not fun. We didn’t get a break every few hours, not even during heavy snow, or to eat.  When your feet hit the pavement or dirt, you were there until the shift ended. If the shift was longer that 12 hours, a truck would drive by and throw out a small box of C rations.  Which were rather useless in cold weather, as the can opener was about 1 inch long, and impossible to use with frozen fingers. Did anyone care? Nope!  (That kind of sounds like a caregiver for a loved one)

My tour of duty at RAF Lakenheath lasted 44 months. The duty was relentless the entire time. Rather like a bad dream, that hasn’t left my memory bank. However, if the duty was hell, then the off duty time with the locals had to be heaven. They were good people, and really did love the “Yanks.” In that era, England was probably one of the few places on earth that treated the American Soldier with great respect and hospitality. Amazing.

The Cold War

Initially, being in England during the cold war was not such a big deal. We didn’t really understand what all the fuss was about. However, with our Secret security clearance we started attending classes, and soon realized the cold war was raging, escalating, and had been for years. The world, had now been revealed to me in a different light. The times were very dangerous, and our military had to be on guard and ready to give it all we had, on a moment’s notice.

In today’s military, the same will apply in many cases. Many of our soldiers know things that we don’t, and quite frankly, we’re probably better off not knowing.

As the world turned back then, the Soviet Union had enough equipment, tanks, missiles, special weapons, manpower in East Germany and the Warsaw Pact countries to overwhelm, then overrun our forces in West Germany in a matter of  hours. We could not let that happen. RAF Lakenheath, being in England was, immune from the initial thrust of manpower and tanks, our threat would come from the sky. Our mission was to get our planes loaded with weapons and, in the air heading to the battlefield before we got hit.

Although, we may not have had the man power, we certainly had the determination and a strong deterrent. Our mission! But a deterrent is only as good as the soldiers and their quick response to any aggression. So we trained all the time. A scenario would come in to the Command Post (main command center on base), the whistle would go off, and we were off to war. When the whistle went off, initially, the troops didn’t know if it was actual or an exercise. So we responded as if it were a real threat. The exercise scenario might be, a division of Russian soldiers started moving around in an unusual or deliberate manner or, perhaps a tank column started moving towards the front lines, and so on. The result of that sort of activity could initiate Defcon 3, where all available F-100 Fighters were loaded with weapons and ready to respond with overwhelming force to any invasion of the West.  Defcon 2 would be preparations for all out war, and Defcon 1, well, if we’d actually gone there, I probably wouldn’t be sitting here now, and perhaps you might not be sitting where you are, either.

The truth is, our life expectancy on a first strike base like RAF Lakenheath, was in the minutes, not hours. We knew that, and it made us more determined than ever to completed our mission and get our planes launched before we had incoming. We were well trained, and dying for our country was an acceptable fate. We were an expendable asset, with a mission orientated mind, that put “Our Country” before anything else in our lives.  And that is a fact! (Still true today)

Extensive training for a chemical warfare attack, was a must. When on duty, we always had our gas mask, chemical suit which was in our war bag, and an atropine injector, used as an antidote to nerve agents, perhaps giving us enough time to complete our mission.

(In care giving for a loved one, my daughter Melissa used a syringe type instrument to place atropine under Annie’s tongue to stop the death rattle. It’s very quick and effective at calming the body down.)

From day one we were told many things.  But the one question that always stuck out in my mind was, “why are we doing this.”  The answer, brought our young military lives into perspective. We were here doing what we do, “So our loved ones and the good people back home could sleep well at night.” Basically ignorant to just how dangerous the world was and what it took on a daily basis to keep them safe. It was an insane world at times, but the truth is, the US Military was always the best of the best on this planet, and still is. They are the “Night Walkers,” “the “Caregivers for a Nation,” and on duty around the clock.

Our armed forces “are” like caregivers for a nation and “do” keep us safe at night. In a world that is so crazy with all the terrorism threats from around the globe, if our armed forces were not out there in the world caring for us, who would. We would not be safe and our way of life, the freedom we enjoy, would be challenged.

When Annie was fighting her battle with cancer, I was relentless in keeping her safe. And I did a good job, while loving her dearly through her nightmare. However, in the end I lost her and the battle.

Well, it seems to me there is a real cancer out there in the world, terrorism, and our military are relentless in doing all they can to keep us safe. Their doing a good job too, and unlike me losing Annie, if our military were to lose this battle, our country and way of life would surely be in peril. In fact, of that I have no doubt.

When I was a kid in the early 1950’s and at school, we were always doing duck and cover exercises, getting under our desks and frightened from listening to the adults talk about those crazy communists that were going to start a nuclear war and kill us all. During the 1960’s, when this country got involved in the Vietnam war, most of us no longer saw the big picture, the nuclear arms race, as our attention was on Vietnam. It wasn’t until I got to England that I saw just how dangerous the world truly was.

The real deal…America withdrew our last nuclear bombs from RAF Lakeheath in 2008.

Last American nuclear bombs leave Britain after half a century of …

www.dailymail.co.uk/…/Last-Americannuclearbombs-leave-…

Daily Mail

Jun 26, 2008 – America has withdrawn the last of its nuclear weapons from military bases in Britain, it was claimed yesterday. The remaining 110 free fall nuclear bombs are understood to have been removed from RAF Lakenheath in Suffolk on President George Bush’s orders.

When I arrived at RAF Lakenheath, a half century ago, this is what I was guarding on some of the F-100 Fighter Jets, or walking over on the mounds while they were in their bunkers. When on duty at the mounds or when guarding a loaded F-100, the guard represented the last line of defense for the safety of the weapon and continuation of the mission. We took the job and ability to use deadly force, seriously.  We were part of the overall deterrent that allowed the citizens and loved ones back home to sleep peacefully at night, naive to the serious game of chess that was going on between two large nuclear powers, each capable of mass destruction, of the other, and perhaps the world.

Stressing the point, of the role our military plays in keeping us safe was the theme to this article. It’s so important, that the folks, the citizens of the United States know and understand this. If we take care of our military, they will take care of us. “A weak military, becomes a weak country, losing its freedom along the way.” There is always danger lurking in the darkness, but for now we have the “Night Walkers.”  Let’s keep it that way.

While in the military, I had a great love for my country. And after being out of the military as long as I was in, I still feel the same way — “Love of Country” is so important to the survival of a nation.

And as I learned later, the communist, well, they were no more crazy than we were when it came to a nuclear exchange. When everybody loses, what’s the point. They loved their families and country too.

In closing this article, even if you don’t care for our armed forces, but enjoy your way of life, support them, help them, and in doing so they will keep you safe. That way, you can safely go play “Bingo” on Friday nights, Golf on Saturday afternoon, or whatever it is that you enjoy doing. Personally, I like to fish.

Military Doctrine 101:  A strong deterrent will help keep us safe. Hence, we have the “Caregivers for a Nation.” They’ve got our backs.

The creation of a caregiver

The creation of a caregiver

Looking back on my childhood, and my young and adult life, it is now apparent that I was destined to be a caregiver.  Little did I know, that someday, I would be caring for the most important person in my life. My wife, Annie.

In the beginning, or as I like to say the creation of a caregiver, I think the most important ingredient needed to represent the true spirit of being a caregiver, is simply caring for others and their plights, which would be better known as empathy laced with compassion.  This story will bring caring into prospective through the innocent eyes of a child, that eventually grew up and kept on caring.

I put this little story together in random order, with the exception  of when I, or the family, moved on.

This Is My Story

When I was 5 years old, back in 1953, Mom and Dad packed up the car and we moved from Paris, Arkansas, where I was born, to the little migrant farming town of Eloy, Arizona, population of 3,500 to 5,000 folks.  Being a farming community, the farmers grew a variety of crops, which when in season made the little town double in size from the influx of migrants. Cotton was by far the biggest crop.

Apparently, Uncle Ed had gone on ahead of us and had a job as a mechanic waiting for my dad when we got there.  Our southern family was very close knit, and in the end, many other family members ended up in Eloy, too.  From the memories of our packed car, I guess we sort of looked like the Beverly Hillbillies, well not quite, simply migrating West.

As a young boy Eloy presented many challenges to me, of which, many I didn’t really understand until later in life. The biggest hurdle I faced was segregation. I simply didn’t understand it.  The black folks lived on the South side of the tracks, and most of the white folks and Mexicans lived on the North side.

The landowners with the big cotton fields and cotton gins usually lived on the farm and were relatively wealthy. Not sure there was an upper class in this town, but there were a few homes that expressed wealth. Then of course, there was the upper and lower middle class. Those of us that lived near the tracks were usually lower middle class, and those that lived in nicer more established areas were the upper middle class. The Mexicans and Black people were, for the most part the lower class.  However, I’m sure there was a few successful Mexicans, perhaps some Black people too.  Even in poverty there is a pecking order, i.e, the doctor of the neighborhood would have some prominence and probably some money.

Things back then were not like they are today.  If a neighbor lady caught you doing something bad or she perceived it that way she could physically spank you. And when you went home crying to mom and dad, the first words out of their mouth would be, “well you must have done something to deserve it.”  End of conversation.

At some point we started attending the First Baptist Church. It was like a neighborhood thing, as mom and dad would take me and my sisters in tow and off to church we’d go. Some of our neighbors would be walking to church too. I don’t believe we missed too many Sunday’s.  I know that because my Sunday school teacher owned a big farm, and every Sunday when he took attendance, if you were there he’d put a little sticky star near your name. At the end of the year, if you made it every Sunday you got a crisp five dollar bill.  That was big bucks in those days.  I know I got the money at least once.

bobby1953When I was six or seven years old I got my first job.  The owner of the A&W Root beer stand, Mr. Lawrence, had me come over six mornings a week between 6:30 and 7:00 A.M. to pick up the papers in the parking lot from the previous days business. I had to come early because of school. There was always plenty of paper laying around, as that was the era of the car hop.  My pay was a large frosted A&W root beer every day.  Sometimes I’d get lucky and they’d give me a burger basket and a root beer float as a treat.

Mr. Lawrence was kind, and during the college basketball season he’d put me in the back of his new 1954 or 55 big red Cadillac Convertible, top down, and take me on a 50 plus mile drive to Arizona State University to watch the Sun Devils play.

The area I lived in was predominately poor, hence we lived in an adobe house. But we had fun, and dad’s job in Casa Grande as a mechanic, put food on out table and allowed the family to do a few things together each year.

My young life was a bit like you see in some of the old 50’s movies.  Every morning except Sunday, all summer long, one kid, usually Larry, would start trekking the dirt streets (there was no pavement in our area) with a baseball bat, ball, and a glove and walk from neighborhood to neighborhood gathering the boys to go play ball in the large dirt Catholic church parking lot.  Sometimes after we played for a few hours and were hot and bothered, some of the moms would take a few of us to the irrigation canals that literally surrounded the county, and were only about two feet deep.  We would slide down into the crystal clear cool water and go as far as we wanted to.  Life was very good for awhile, until I started losing my innocence.

The Young Caregiver

One day, with my mom’s permission, I decided to spread my wings a bit. About a block from my house there was an older kid living there with his family, safe in his own environment.  I went down to see if he wanted to play.  I walked by his home often, and could see him playing, almost always on his own, in the safety of his fenced in back yard. For the most part, the white kids stuck together, and considering the times, that’s just how it was.

My new friends name was Cisco, and he didn’t speak a word of English, nor did any of his family.  Over time I started learning to speak his language, and he learned to speak mine.  Within a year we could have a short but understandable conversation.  What bothered me, was that he was never allowed to leave his yard.  His mom wasn’t having it. She was a short stocky Mexican lady that didn’t have to say a word to cause action. She grew rows of chili peppers in the back yard, and I swear, if we nicked even one, she somehow knew.  Her look would speak a thousand words, and the pretend daggers were flying everywhere.

Actually, I felt like she was kind of mean for not letting Cisco out of the yard.  But she knew things I was incapable of understanding at the time.  Some folks just didn’t like the Mexicans, and even if they did, most were treated as third class citizens.  And the most often used word of the day to describe them was “wetbacks.”  It’s a derogatory term meaning when they swam across the Rio Grande River to get into this country illegally, they got their backs wet.  I’m not implying they were illegal, just stating the term that was used and what it meant. By the way, that was an adult word.

Cisco was about five years older than me, but you wouldn’t know it, as they used to say back in the day, he was “a bit slow in the head.”  But he was my friend and I didn’t care.

One day, after his mom started letting him stray, he showed up at my house with a wagon he built by hand. He had attached four old small wagon wheels to wood framed metal rods that were used for the axels, and had a large board with a backboard connecting the front with the back that I sat on while he pulled me around the neighborhood with a rope hooked to the front. We really had a blast. Sometimes at the end of our ride around, we’d stop by his moms house and have homemade hot and sweet tamales.  The sweet ones were particularly delicious.

During the cotton season, on some early mornings before day light, a large truck with a canvas boxed back, would stop in front of my family’s house. My mom would walk me out to the back of the truck, and with my arms extended up, a Mexican would reach down and lift me into the truck. The truck would be full of Mexicans, and other than the driver of the truck and me, there was a bit of broken English and that was about it.

From my house, the next stop was Cisco’s house. I don’t ever remember Cisco getting on the tuck, but I will never forget his dad. He had a gold looking tooth in the front of his mouth. He would always sit near me on the back of the truck, and sometimes when I looked at him, all I saw was a glimpse of a smile with a gentle sparkle in the dark, bouncing off some object or perhaps someone lighting a cigarette.

We’d travel out to the cotton fields, and I’d spend the day with them picking cotton. At lunch time we’d take a very short break, and I’d sit around with them eating a bologna sandwich from my little brown paper bag, that was heavily stained from the greasy sandwich.

The workers treated me very well, and I was never in any danger. Perhaps I was like a mascot, or something, as they were very protective in caring for me.

When I’d take my gunny sack of cotton up to the scales to be weighed, you could hear the laughter from the men standing around. I didn’t pick much, but when I left for home at the end of the day, I was always tired and had a few dimes in my pocket. Didn’t have much, but for that moment in time, I felt rich, and satisfied with myself.

Remember the old song: Summer time and the livin’ is easy, fish are jumpin’, and the cotton is high, Oh your daddy’s rich and your ma is good-lookin’, so hush little baby, and don’t you cry. Those were the days.

What I’m going to tell you next is kind of sickening, and it’s one of those memories, along with many more I made in Eloy, that will be forever etched in my memory bank. This would be the day I lost my innocence.

Cisco didn’t go to school, but on some occasions as I walked to school he’d join me, and then come back after school and wait for me to get out.  On our way home one afternoon, this car with  several older boys inside pulled up beside us and started taunting us. Finally it stopped, two or more of them got out, and one of them hit Cisco so hard, to this day, I can still hear the sound of his back crashing onto the hard earth. Then they kicked him a few times. After that it was my turn.  One of them pushed me to the ground and held me down while the other one started pinching me all over the back of my legs leaving big red welts.  I was being punished for playing with my Mexican friend. We were both crying when we got to my house and to safety.

After I explained to my mom what happened, she got Cisco cleaned up so when he got home his mom wouldn’t see or understand the depth of the incident.  His mom could not have done anything about it anyway, the cops wouldn’t care, they were simply looked at as migrant farm laborers, even though they were most likely citizens or permanent residents.

On the other hand, I was white, and my mom was madder than hell with the opportunity for recourse. She asked me if I knew who the two boys were, and I told her they were Mrs. Brown’s (fictional name) boys.  She grabbed me with one hand and Cisco with the other, then walked him to his house where he was safe. (The language barrier kept my mom from telling her anything about the incident.)

From there we went on what seemed like a long walk to Mrs. Brown’s house. When we got there, mom banged on the door, Mrs. Brown answered, and mom told her what her boys did to Cisco, then jerked my pants down (embarrassing me at the time) showing her the many welts on my legs.

What she did next, kind of shocked me, but it was adult stuff.  I now had my very own little war story to tell.  Mom proceeded to slap the holy crap out of Mrs. Brown, and I believe really did ring her bell, while saying, your boys better hope little Bobby’s daddy don’t show up down here. They never bothered us again.

bob and ciscoCisco and I remained friends, but we were both now aware of the dangers outside his yard.  The same dangers I’m sure his mom was already aware of.  So he basically quit venturing out very often, but, I would go down once in awhile and check on him and we’d spend time playing together.  I was his only friend, and cared about him.

As a family we didn’t have a lot, but we had a lot of fun times, a decent adobe house, car, and always food on the table.  Mom and dad usually made the trip to the state fair with us kids once a year, and we’d go back to Arkansas to see our kin folks, for our vacation.

Family gatherings in Arkansas were always great. The days of the “Honky Tonk.” When the adults went to the “Honky Tonk,” the kids ran wild.

And when in Eloy, if I got bored on a Saturday afternoon, I’d walk to our little town, lay one the wooden sidewalk, stare in under the swinging bar doors and watch the folks dance. Invariably someone would see me and bring over a bag of peanuts, drop them in front of me while handing me a Coke.

Of course the dancing was 50’s rock and roll, with my favorite being the Bop.

I guess I got carried away there. The point I was trying to make was that, although we didn’t have much, we had privilege.  From experience, not from some book I’ve read, if you lived in segregation and were White, you were most likely privileged.

Racism

I don’t like racism, or the word racist. In my opinion, I believe the word is thrown around in this country today, way too much, creating situations that sometimes have nothing to do with race. A voice can be silenced by one powerful word. Racist! When in fact, the conversation had nothing to do with racism. And I’m just being honest.

If you saw what I saw in the 1950’s, and you happened to be a Mexican or especially a Black person you’d have a much better understanding of racism and perhaps the word would not fly around so much in the language we use today.  It was really bad, and for those people feeling the sharp tongue or fist of racism, there was no place to hide. Imagine being a young Black teenager, getting to cross the tracks for the movies, then hustling your way home after the movie, because, perhaps that was the safe thing to do. That was a hard one for me to understand.

One day after the movies let out, a Black man was walking two children back across the tracks.  When he got to the tracks a train was coming, and in those days if the train was not stopping in town, it was flying down the tracks. He stopped with the children at the tracks. Apparently one of the kids crossed the tracks, and turned to come back for some reason. The adult stepped out onto the tracks, probably stopping the kid, and got hit by the train. What a nightmare for those children.

After the train passed and eventually stopped, we all went running over there. There wasn’t much there, and what was there, I won’t talk about. Other than the heartbroken children, and other children, afraid and crying. I’ll never forget that chaotic scene, what I saw, or the sad sounds of the children.  It doesn’t ever leave you.

Living on the North side of the railroad tracks and facing them, we lived about one-hundred yards or maybe a little more from them.  In between my house and the tracks was Interstate 10, which ran East/West and was two lanes in those days.  On the South side of the tracks and to the left of my view from our living room window was shanty town, which was where most, if not all of the black people lived.

Being a young baseball player, I loved the sport.  I used to hang over the back of our couch in front of our living room window and sometimes get to watch the Black kids play baseball across the tracks, always longing to go over and play ball with them.

One day I plucked up the courage and asked my mom if I could go across the tracks and see if they’d let me play ball with them. She said she didn’t think it was a good idea, reminding me of what happened when I made friends with Cisco.  I was persistent, and eventually got my way. But for whatever reason, at that time I never went over.

There was never a written rule that said I couldn’t go play with the Black kids, but sometimes as I found out, the unwritten rules can be sharper than the written rules. Those rules don’t come from any law, they come from the adult tongues.

The day I met Tommy Lee and Herman was quite the experience.  I didn’t know, and to my recollection hadn’t ever met any black kids. That day, I was leaning over the couch looking at these two black boys with a bicycle, playing near, but on their side of the tracks. I got permission from mom to go over and meet them. After a half hour lecture about getting squished like a bug on the interstate and railroad tracks, I took off. When I got over there, I have no idea what was said, but we basically just started playing near the tracks.  I had a few pennies, and we decided to put a couple of them on the tracks for the train to run over. Wow!  We were amazed.  It did in fact squish them like a bug.  That was a cool moment for us. A big deal, sort of.

I never played ball with them at the time, but the three of us built a good friendship, and spent some time together. Some days we would all three get on that old rickety bicycle and ride in the desert.  I was always on the handlebars, Tommy Lee was at the wheel so to speak, and Herman was on the back fender.

Mom would allow the boys to come over to my house and play, but it had to be sneaky, and we had to play indoors.  Mom would let us play, wrestle against each other, on her and dads bed.  We had so much fun, even though we were confined to the house.

One day while in Sunday school I was telling my Sunday school teacher, the land owner, about these two Black boys that were very good at baseball and would be good players for our church team. That’s when I learned about the unwritten rule, the sharp tongue. He sharply said I had no business playing with those little colored boys and he didn’t want to hear any more about it. Oh, I remember that day well.  It really upset me, as I didn’t understand… They were my friends, and he was like a mentor and I looked up to him. Why would he say that?

Often, If the Black man or Woman was of prominence, they would be addressed as Mr. or Mrs., followed by their last name.

When I told my mom what he said, as I recall she wasn’t surprised.  It was the Cisco effect, only non violent. She sat me down and talked to me about it, but never really had an answer. She and my dad didn’t have a problem with Black people, hence, I didn’t know hate.  The one thing she said to me was, the next time you’re in Sunday school ask your Sunday school teacher what Jesus would think about you playing with those little Black boys.  And, that God said we were all created in his own image, so why are they treated differently.  That was some heavy stuff for a seven or eight year old to say to a person of authority.  It took awhile for me to pluck up the courage to speak to my teacher, but when I did, he didn’t have an answer and seemed to be very angry with me. Eventually his heart softened, I guess,  and he came to me at Sunday school and told me to have the “boys” at our next practice.

Getting to practice wasn’t that easy. It was the three of us on Tommy Lee’s bicycle, riding like the wind through some scary, to them, and different territory. Well that’s what we did, and I don’t remember any problems, so there must not have been any.

Herman was the real ball player, he was a star.  He was really dark black, had big round smiling eyes, and the whites of his eyes were huge.  It wasn’t long before he got a nickname from the boys,  “Herman the spook.”  I know it sounds awful, but that’s just the way it was and it wasn’t meant to be derogatory.  They were my friends, and became my friends, friends too.  “We were young.”

You see, during the Cisco, Herman and Tommy Lee era, I still managed to keep my white friends, and quite frankly they didn’t have a problem with Cisco, Herman and Tommy Lee.  It was, and forever will be the responsibility of parents to teach their children well. I was taught to care for others, and to stand up for the underprivileged when I could.  No, I wasn’t taught literally, I learned by the example set for me by my caring parents. My mom would tell me stories about her daddy, my Grandpa, who migrated to the USA from Belgium, had a bit of money, and when she was born they had a Black maid who helped raise her and her sisters.  I forgot her name, but my mom spoke very highly of her, and I believe she left an everlasting impression on mom, which she was passing on to us kids through her stories and actions.

At some point, grandpa got prostate cancer, and after a long battle with the disease not only lost his life, but all the money he had put away too. And mom and her sisters lost a good caregiver, and friend. The family could no longer afford her services. (As I write this article, I am battling Prostate Cancer–Perhaps, thanks to my grandpa, a man I never had the privilege to meet.)

Here’s the last point on my Arizona childhood I’d like to make.  In 1955 or 1956, I had agreed to meet Tommy Lee and Herman at the movies. I was 7 or 8 years old by then. They said they would be sitting upstairs.  I didn’t realize that all black people had to sit upstairs, while white people and Mexicans sat downstairs.  When I got to the movies, and paid my dime to get in, I ran over to the stairs and started to go up and find my friends. Some man grabbed me from behind, shouted at me and told me I wasn’t allowed to sit up there. I’m sure he said some choice words, but it was very noisy, so all I remember is him grabbing me by the back of my shirt at the collar and jerking me back. I was just an excited young kid, probably moving very fast. At the time, although desegregation was starting, segregation was all around.

This fact amazes me. I was remembering the movie I saw that night, and this is the only movie I ever remember seeing at that theater. Probably because it scared the heck out of me. It was called, “The Day The World Ended.”  I just checked google to see if I was right, and yes, it was released in 1955.  So my memories of the events are pretty accurate.

bob and phyllisDespite losing my innocent view of the world as a child, I loved where I lived, as it was all I knew. In late 1958 early 1959 we once again packed up our station wagon, U-Hall trailer and without much of a goodbye to my friends, pulled out of town following Uncle Ed to Northern California.  For me, there was no excitement, just sadness. My biggest heart break was leaving all my friends and my little girlfriend Phyllis behind. She was a cutie.

We settled in the small town of Crescent City, California, located in the far Northwest corner of the state.  The town was sustained by a healthy lumber and fishing industry, as well as a strong seasonable tourist trade.  North, South, and East of the town was the beautiful Redwood forest known for some of the most majestic trees in the world.  North and South of the town nestled among the Redwoods was the Smith and Klamath Rivers, both known for their legendary seasonal salmon and steelhead runs.  To the West of the town was, you guessed it, the Pacific Ocean.  Home to our thriving fishing industry at the time. It was a wonderful place to live as a child, but in the early days after arrival, I could care less.  I missed my friends.

Loneliness

Salmon1When I arrived in Crescent City I was half way through the seventh grade, didn’t know a soul, and felt like no one wanted to know me. We moved into a house on Lauff Avenue, not far from the beach. I know what you are thinking, wow, how wonderful.  No, not so.  This was still the 1950’s, and life was extremely kind to some and hard for others.  My saving grace was a couple tons of rocks piled up near our house and a huge empty field across the street. I had dad shave off one of my baseball bats down near the end so I had a flat surface to hit rocks. And when I was hitting rocks, I was always locked in a pretend world where everything was good and for that moment in time, I was Mickey Mantle making home runs, one after the other.

Just when I thought I was losing my identity, a neighborhood kid, the late Don Hemmingsen, showed up on his bicycle at the rock pile. He was my age, a very happy go lucky kid, and on that day my life changed for the better. He and I started riding our bicycles to the beach, and eventually, weaving in and out of traffic going to the dock for a bit of fishing.  It was great fun, and I started learning rather quickly, I was living in a hidden paradise.

When I entered the 8th Grade, Don and I were in the same class. He introduced me to many new friends, and life slowly came back into balance.

Using my empathy and experience as a guide, in the 8th grade when a new kid arrived at the school, and stood anchored in the same lonely spot as I, the previous year, I made friends with him and introduced him to other kids. As it is today, schools always have a few cliques. By introducing new kids to other kids, they eventually found their own way and made their own friends.

Through my high school years, I sort of lived a dream. Swimming the summers away in the crystal clear waters of
the Smith River, catching large salmon, racing motorcycles, playing in the ocean, simply living life. Looking back, the little town of Crescent City, Ca, had to have been one of the world’s best kept secrets. It was refreshing, after living in a town filled with so much hate, and moving to a town where all kids could be kids. Truly the American dream.

BobbyfishDuring my senior year of high school, a young girl had a nervous breakdown. When I found out, me and a couple of friends went up to see her. To our surprise she had not seen anyone from school. And she was a popular young lady. Problem was, if someone had a nervous breakdown, they were labeled as crazy. So kids stayed away. I personally visited her a few times, which she appreciated, but in the high school it was as if it never happened. Taboo subject. Not sure why I really cared, as I was so carefree at the time. I suppose it was part of my creation.

After high school and one year of college, I had a strong urge to serve my country and decided to join the USAF in March of 1968.  After basic training and technical school,  I was shipped off to England for 42 months, where I eventually met Annie.

And although I didn’t know it at the time, I became a caregiver for a nation. Which happens to be close to title of the new blog I’m writing. It will be different and offer up a uniquely different perspective on care giving.

Over the past 16 months I’ve published 56 blogs on the Caregiver Space to do with care giving and the wretched side effects, including the loss of a loved one, loneliness and anticipatory grief.

According to some articles, empathy and compassion is something that can be taught. In other articles it’s stated that, they can’t be taught or forced. In my opinion, either we’re empathetic and compassionate or we’re not. I also believe that I was born empathetic, and although it was instrumental in my care for Annie, it is, and was a very heavy burden for me to carry, especially during my childhood.  So, perhaps it was my destiny and my pain to be Annie’s caregiver.

It follows that caring for Annie was very traumatic as her suffering became my suffering, her pain and tears, my pain and tears. It was very tough, challenging, but I never once considered throwing in the towel. I pushed forward every day, living on hope that I could spend another day with her. In the end, together we turned a 3 week prognosis into 30 months, making some of the best memories of my life. And yes, there was a lot of heartache, but I no longer dwell on that. I chose life over death and we cheated death many times, hanging on as long as we could. Now I choose good memories over the bad ones.

“Life Happens.”

Annie’s Beautiful online memorial

Caregiver: helpful tips from experienced caregiver

Caregiver: helpful tips from experienced caregiver

When I speak of my loved one, it’s Annie. To you, it will be your loved one. And of course to some, it will be a patient.

The backdrop to my story will hopefully answer some of the questions that come up, when being thrust into the new role of being a caregiver. Remember, care giving does not come with instructions. You’re kind of on your own. Everybody will be telling you what to do, with expectations. Don’t sweat it. It’s happened to all of us.

Although I’m talking about a journey through Annie’s cancer, make no mistake, a lot of this article could apply to different diseases and terminal illnesses. Some things can’t be separated.

Many of us enter the world of being a 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 to 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, I was going to crash–Welcome, “To The World Of Care Giving.”

It was an honor and a privilege to take care of my wife Annie during her last thirty months on this little patch of the universe, we call earth. But it wasn’t easy. Being a caregiver for a loved one can be one of the most rewarding things we will ever do, but at the same time it can be one of the most challenging and difficult too.

Emotions continually ebb and flow, bringing little clarity, but more complexity to care giving.  In my case, care giving meant being locked in an, at times, insane world 24/7 with little chance of escaping.

Truth is, I personally didn’t want to escape. I wanted to have a running battle with the cancer, giving Annie one more day if I could, with a renewed hope for tomorrow.  Please remember, sometimes all a terminally ill patient has left is faith, hope, and love.  Love being the greatest. When all else fails, the greatest gift we can give our terminally ill loved one, is love.

Being a person that didn’t have a clue what being a caregiver was all about, while being thrust into the world of cancer with no concept of what the disease stood for, was very tough.   Of course, I was familiar with the term, Mr. Somebody, recently passed from cancer. But think about this…What does that really mean to a newbie caregiver. It means you understand the concept that cancer can be deadly, but not how it works. And just to be fair, for a newbie caregiver it could be any form of serious to terminal illness, long or short term care required. Many of the functions, regardless of the illness are going to be the same.

As caregivers, we often become the patient’s window, or eyes and ears, to the world. Without us, for many, the suffering would be great.

In order to demand the best care for your loved one, you have to lead by example. You’ll probably be clumsy at first, make some mistakes, but no caregiver should ever be criticized for trying to do their best and making mistakes in the process. Keep reminding yourself, you’re doing a job that most people won’t. If you’re being criticized for doing your best, ask them to take your place. They won’t!

Being proactive in your loved ones care, is paramount to their well-being. If you know what you’re talking about, think you know, or maybe you know, and you see a perceived problem, don’t remain silent, bring whatever it is to the appropriate persons attention. Your silence could potentially lead to serious complications. Yes, you might be a pain in the butt at times, but perhaps that’s better than the consequences of not speaking up.

I’m going to help you by breaking down a few areas that really troubled me and perhaps help you avoid some of the many caregiver traps.

The Diagnosis

Once the preliminary testing and biopsy had been done, Annie and I were advised that we’d get a call to come back to the cancer center when, the results were in.

Three days later I received a call to bring her back, that day. When we got there and taken back to the patient room, I found out rather quickly I was not prepared, psychologically, emotionally, or with a method to take notes on the visit.

Here’s what I didn’t understand and where I got it wrong. When Annie was given a death sentence, instead of lovingly caring for her, I sort of melted down with her. And that may be normal, but not recognizing that her life was spiraling out of control,  was a missed opportunity to better console her.  If I had it to do over again, I would have sucked in a bunch of air, put my arms around her and loved her through the wretched diagnosis. No spoken words could make things right for her. She was dying, her prognosis was very grim. I was told privately, she had maybe 3 or 4 weeks to live.

Without taking any notes, when we got home there was more questions than answers. Of course, I made the phone call to the cancer center and got what I  needed to know, but that was after the fact. I knew I had to do better.

From that point on, I made it a point to pay attention to every spoken word and if I had a question, I’d ask it. I took mental notes of the conversations, got copies of all the blood tests or other tests conducted on each visit, before we left the appointment. It’s wasn’t difficult once I got through her initial appointment. Still, it would be wise to carry a notebook with you to all appointments, and a good place to keep scheduled appointments.

The reason blood test reports are so important, is that they contain a wealth of information. If you’re dealing with cancer, especially blood cancer, and you lay the results of several tests out, in the order they were taken, and start comparing the numbers from each test, you’ll know if there is any improvement going on at the time, or not. It can be psychologically and emotionally important to you and the loved one too.

In the beginning for the first few months, Annie was losing a little more ground every day. But slowly and surely over time, I could see a little bump in the numbers, with indicated some stability in the blood counts. I wasn’t simply looking at red or white blood cells–included in the report are many other life sustaining factors such as nutritional levels, potassium, magnesium and so on.  So always get the report if you can, and compare it with future reports. (it’s kind of a big deal, it really is.)

Insurance

When you arrive with your loved one for the diagnosis, make sure you have an idea of what healthcare coverage your loved one has.  One of the first things said to me after the diagnosis and a few spoken words from the oncologist was, Bob, let’s take a walk down the hallway and see what sort of insurance coverage you have. I immediately had, what felt like, was a short panic attack, as I had no idea of what our insurance would cover in the very expensive world of cancer.

Sadly, the level of care and treatment your loved one will get is determined by your insurance coverage. For example, if you need the best chemotherapy available, the so called silver bullet, which will usually be much more expensive then the lesser chemotherapy that might get a response to the disease, depending on your coverage the insurance company initially makes the choice on which drug they will approve.  If due to your coverage the insurance company elects to approve a lesser version of the silver bullet, they’ll try it for a short time and look for a response from the cancer. If it don’t work, they’ll give the oncologist permission to move up to the next chemotherapy on the ladder, or they won’t. He’ll certainly seek approval to move up to the next drug. And sometimes, as Annie’s oncologist said, by the time a patient gets what they need, it’s too late to save them. (Always question the oncologist on how he expects the cancer to respond to the particular drug being given to your loved one, and is it the best available.)

After checking our coverage, Annie’s oncologist sat me down and thanked me for my 24 years of service in the military, and with a sigh, told me he wished everyone had coverage like Annie, as he could help so many more people. It was imperative that Annie have the silver bullet, and she, was covered for it.

Anytime a loved one is going in for a diagnosis or potential diagnosis, make sure someone is with them. Annie’s visit and diagnosis would have been very difficult for her on many levels, had I not been there. She was trying to come to terms with all the emotions that were filtering throughout her body, and answering questions about our insurance coverage would have been very difficult for her.  And, had she not been able to answer the questions on insurance, treatment strategy would be useless.  Treatment usually, perhaps always, works off insurance approval.

Clinical Trials

Clinical trials have been around a long time. But not many folks know about them. I certainly didn’t. And sometimes, especially with cancer patients, depending on the cancer, the clinical trials may offer the best chance of survival. Of course, that’s due to new experimental drugs and therapies not yet on the market.

When you get a cancer diagnosis make sure you ask if there are any clinical trials going on for your particular cancer. In Annie’s case, her oncologist called a nurse into the room that handled the clinical trials. Annie met the requirements, but the clinical trials for the chemotherapy she needed had shut down for two weeks for medication adjustment–And the oncologist said, I don’t have two weeks, I don’t even have two days. He needed to start chemotherapy immediately, which would disqualify her for the clinical trials at the time. And it did. However, with our insurance coverage she was able to get the new drug anyway. If you can get on the clinical trials you will likely get the best medication with little out of pocket expense. That’s an important fact to remember.

Also, there are many different diseases besides cancer that have clinical trials, and some are to do with medical devices. So make sure you ask the doctor about the clinical trials if you’re facing a particularly bad disease, especially if you don’t have great insurance coverage. And don’t wait until treatment starts as that may disqualify the patient or loved one.

There are also clinical trials now for some cancer’s that have regressed, and for cancer that is not responding to treatment.  If you don’t ask, you might not know that, you had a chance to help save, or certainly prolong the life of a loved one.

Mutual respect–doctor versus caregiver

In the beginning, sometimes I’d tell a person who the oncologist was that Annie would be seeing and they’d say, I’m sorry. It appeared Annie’s oncologist had no bedside manners.

I spent 24 years in the military, traveled two and fro, met people everywhere, and in the end I’d have to say, Annie’s oncologist, the late Dr. Moore Sr., was one of the greatest men I’ve ever known.

Yes, he barked at some nurses and her caregiver, me, at times, but he always had Annie’s best interest in mind, and treated her with dignity and respect. As for his bedside manners towards her, impeccable.

Dr. Moore Sr. didn’t just give you his respect, you had to earn it. Why? Simply put, there was often a life on the line. He didn’t like losing patients to cancer. And being fair, the caregiver, the nurse, and the oncologist had to be in sync to get the best possible outcome for Annie or any patient.  And when we didn’t hold up our end, we heard about it.

I took many tough blows (words) to the chin, but I never fell down, I listened and I learned everything I could about the disease. In a few short months he could ask me anything about the disease and I had an answer. My answer may not have always been right, but he saw the progress, and over time we could have an educated conversation about her cancer. And he knew, when his patient was out of his control, I took great care of Annie and had his back too. You see, I wanted her to live too.

As a caregiver, if you pay attention, don’t cop an attitude, take care of your loved one or patient in a meaningful way, you’ll earn and get the respect you deserve. An oncologist or perhaps a doctor can work wonders in an office, but if the weak link in the chain is at home with the caregiver, then the wheels will start spinning in place and perhaps fall off. Progress will not be made, and in fact, may reverse itself.

Strong Support System

You’ll learn rather quickly that you need some sort of help. Annie’s care was, for the most part 24/7. Yes, I could tuck her tightly in her hospital bed in the middle of our living room while I raced over to get some staple food or run a quick errand, but sometimes one can’t do that. Our daughter helped me when needed, and if she was not available I had a neighbor that would sit with Annie.

I do know, when you are a caregiver folks just seem to disappear.  Still, you must try to build a support system by engaging in conversation with them and soliciting their help, if only for a short time, once in awhile. Do this before they disappear, and if you can’t, won’t, or don’t, caregiver duties may wear you out rather quickly. Caregiver burnout is not a good place to be.

The first two months I lost 18 pounds. But I muddled through, and in the end used whatever help I could get. However, I didn’t need or want much help as I went ahead and closed our two small businesses down after the diagnosis to give her my undivided attention. Financially it was tough, but you can only do what you can do. Losing financial stability is simply the casualty of a terminal illness.

Anticipatory Grief

bob's blue batThe minute I heard Annie’s prognosis, I started grieving her loss. It may not happen to you until later on in the illness, if it happens at all. But here’s the thing, if you are grieving, try not to grieve around your loved one. It’s a given that, if you are suffering from Anticipatory grief, your loved one will probably be grieving their own mortality. Try to keep your emotional state in check if you can. I lost it with Annie, one time. Cried like a baby sitting at the dining room table with her. Of course, it worried her, she was depending on me to be strong and help her fight the battle. My sign of weakness whether warranted or not, was not a good idea. I learned to take it outside. I had a plastic blue baseball bat I used to smack a tree. And to my surprise it worked well. I came back in the house and continued on with my duties without all the pent up emotions.

Control the illness

If your loved one is suffering from a newly diagnosed terminal illness, at least in the beginning, it’s quite possible that the illness will occupy much of your mind, and you may feel a counterproductive hate for the illness.  But while your fumbling around with more questions than answers, if you can get this one area right, you’ll save yourself a lot of chaos.

I had to learn to control the cancer and not let it control me. How do you do that? First, recognize that a big part of your struggles are centered around the disease. For example, while I’m walking around thinking, I hate cancer, I hate cancer, look what it’s done to Annie–in essence the cancer is having its way with me. My mind flows from one bad thought to another, to include my impending loss. Over time, I taught myself to steer my mind away from those thoughts by understanding, life is, what it is. I can’t change it, so why dwell on it. My position in Annie’s life was to love her and provide the best care for her I could. And I couldn’t do that while fighting a losing battle in my mind with the “beast of cancer.”

Eating, not a subject for an argument

Yes, I’d fix Annie a special meal that she’d asked me to cook, and when I brought it to her she’d nervously say, I don’t fancy it now. So I’d take it to the garbage and dump it. And of course, being human, I’d feel a bit put out. But we learn from our mistakes.

I spoke to Annie’s oncologist about the eating dilemma, and he said to feed her whatever she will eat, and at the same time, quit trying to create a perfect world around a dreadful situation. He said, under no circumstances was I to ever make eating the source of an argument. Why! Because cancer inherently puts off a multitude of chemicals that will affect ones appetite. One minute she may fancy something and the next minute, maybe not.  So I developed a strategy through, going back to her old staple favorites.  Fresh or frozen raspberries with vanilla ice cream, deep fried pancakes with mandarin oranges on top with syrup. Which between the two is about one-thousand calories, and half way to the 2,000 calories she needed daily. She also loved the drink, chocolate Boost. However, she would not drink it. She had me freeze it and she’d dig it out with the opposite end of a curved up metal handled spoon. Weird, I know.  But she’d have two or three a day, and digging in that container occupied her time and mind. Those drinks had 250 calories each, some good nutrition, and protein. It worked really well.

What I’m saying is, be creative. If your loved one won’t eat anything but junk food, then do what I did, get out of the perfect world of nutrition and help them gain weight or at least not lose it. Remember, be a calorie counter. The goal is 2,000 calories a day minimum. Pneumonia and bed sores loves malnourished  loved ones.

This might make you smile, and although it started out innocently, it turned into something special.

Annie was in the big chair, asleep at the treatment room getting chemotherapy.  Her sleep was induced by high dose morphine, and although sluggish, as you will see, she was still with me.

I was sitting and observing her, when out of the corner of my eye, I saw the volunteer from Victory In The Valley come walking by with a big basket full of all sorts of snacks. She asked me if I wanted a snack.  I said yes, and plucked out a nice bag of Cheetos. Now those are a really fat fueled, calorie filled snacks. After the first 2 or 3, I guess I was crunching, Annie reached her little hand out to me, palm up. I took my right hand and placed it in hers thinking she wanted to hold my hand for comfort or she was showing me affection. Not so! She shook my hand off, and with her eyes still closed, motioned with her hand for me to give her the bag of Cheetos.  So I put the bag in her hand and she ate every single one of them. Amazing! I had never seen her eat junk food like that before.

What just happened?  Well, it was time to get creative. A door to a huge opportunity just opened. After she stole my Cheetos, I knew I could probably get her to do it again.  I’d go into the living room with a calorie filled snack, sit on the couch and watch her, watch me, as I snacked. Like clockwork she’d say, “Watcha-got.” From that point on, the snack was hers. My daughter did that with her, too. It could be so much fun caring for Annie at times. Never a dull moment.

Caregivers Love

Love, your loved one through their disease if you can. I know the difficulties and challenges presented in the care giving for a loved one with Alzheimer’s and Dementia. But, knowing is understanding and simply doing the best we can.

My position as Annie’s caregiver was not to bark orders at her, but to guide her as best I could, based on my understanding of what we were dealing with at the time.

I went out and visited my dad last year, not long before he died. I noticed he had the onset of dementia. He made me smile so much. Metaphor: I swear, instead of us both talking about Apples when we spoke I, might be talking about Apples and he’d be talking about Oranges.

It was okay. I knew what he meant. If your loved one gets confused, work with them, stay with them, because what’s going on in their mind is totally unknown and unimaginable to us. Dad always called me Bobby. I wondered, in his mind, was he thinking, Bobby, you don’t understand a word I’m saying, do you. I hope that wasn’t the case. I tried to understand.

My sleep solution

In the beginning, care giving for Annie wore me out. It was called 24/7 around the clock care. As many of you know, that isn’t always the case. Sometimes, at various points in Annie’s illness she would be so sick, it would  require a few 35 hour shifts with little rest in between.

A nurse, noting how tired I was, wanted to know my sleep schedule. When I told her what was going on, she simply said–drop what you’re doing at the time if you can and learn to sleep when she sleeps. Once I developed a strategy, I started pushing her wheelchair up to the head of her hospital bed, placing her hand in mine so I’d know if she woke, then lay my head on the side of her bed and take a nap.

The nurse wasn’t a rocket scientist, but her words made me feel a bit like a dummy. And she was right. It worked very well for both Annie and I. A rested, alert caregiver,  is more capable of carrying out their daily duties with quantity and quality.

Never assume anything

While in the military, seventeen years of which were during the cold war, we were taught as soldiers, never assume anything, always check it out. That phrase served many soldiers well.

Enter the world of care giving. An invalid assumption can cost the life of a loved one or patient. It happens all the time. (A recent New York Times article stated that medical mistakes are the third leading cause of deaths in this country, behind Heart disease and Lung cancer.) For example, the words, “I assumed she’d be okay until the doctor made the rounds in the morning,” are spoken all to often.  Sometimes, that’s not the case.

During Annie’s 30 month cancer journey, she spent 100+ days in the hospital. I stayed with her 24/7 unless I had an appointment, and then I got someone else to stay with her for that short time. I always slept in a recliner near the foot of her bed every night, at an angle where I could see her face.

One morning around 2 A.M., I was just settling down in the recliner. Not long after, I heard Annie start breathing in very short, rapid bursts. (This was midway through her disease and almost everything that happened, had happened before. I was educated.) I knew immediately something was wrong. I got off the recliner and walked over to her. The first thing I did was to gently turn her head to the right and check the vein on her neck. It was pronounced and  protruding out. Then I squatted down under her bed and checked the catheter bag…It was empty. I immediately called the nurse to our room. When she arrived, I told her Annie was on fluid overload, and that she needed some immediate intervention via a diuretic to force the fluid out. Then I explained to her how I knew Annie was in trouble. Which was, rapid breathing, the catheter bag, and the protruding vein in her neck.

She said, Bob I can’t wake the doctor at two in the morning and tell her you think Annie is on fluid overload.  She’ll be making rounds in the morning, we’ll wait until then.

I refused to take no for an answer. Which would have been assuming she’d make it until the doctor showed up.

I told the nurse it appeared Annie was drowning in her own fluids. And in the past they used Lasix to get the fluid out. Once she knew I’d been there and done that a couple times before, she ran down and called the doctor. When she came back, she gave Annie an injection of Lasix, and I got to spend the next few hours dumping the fluid out of her catheter bag, and writing the amount on a sheet of paper (chart) in the bathroom.

Annie was back to normal in a couple of ours, and I certainly didn’t mind dumping the bag.

Had I assumed Annie was going to be okay, I’d probably lost her in the night. I knew what her problem was, and when I said it appeared that Annie was drowning in her own fluid, that was the term her oncologist used when he paid us a surprise visit months earlier, and I was sitting by her bed while she was on fluid overload. Reason being, she was getting fluids, they were being urinated into the catheter bag, which was full and backing up into the body. That is an emergency.

This all lead to an intense chat with the charge nurse and me, over the catheter bag. That was around the third month of Annie’s cancer and from that point on, I was always in charge of the catheter bag.

During that event, Annie’s cardiologist, Dr. Farhat, came over and examined her and started treatment with Lasix to remove the fluids. He also taught me how to identify fluid overload.

A caregiver getting educated on the disease and it’s side effects is an invaluable tool in times of crisis.

Approximately 2 days later, the CNA came in, again around 2 A.M., and checked Annie’s blood pressure. It was like 65/39, very low. So I immediately looked in Annie’s mouth, it was very dry, and when I checked her Catheter bag it was empty, despite the fact that she was getting Iv fluids. I told the CNA that  Annie was dehydrated and needed some help. I needed to see the nurse right away. It was the same nurse as before, and we had much of the same discussion as before.  But she called the doctor, and the next thing I saw was her running down the hallway with a 500cc bag of fluid to be bolus fed–that’s rapid feeding. Within an hour or less, urine was flowing into the catheter bag, her blood pressure was coming up, and life was coming back into balance. And, I had another long night and partial day keeping up with the catheter bag.

I learned through care giving for Annie, not to concern myself so much with what was causing a problem, but rather, identify a symptom and get help. If you identify a problem, it’s the doctor’s job to figure out why it happened. And there very good at that.  With seriously ill cancer patients, things can go downhill very rapidly. But as a caregiver, if you watch and learn, through your past experience you’ll be able to see a symptom, and get intervention, as did I.

If I had of been a caregiver for anyone other than Annie, or a close loved one, I could not give them what I gave her. Why! Because love is a powerful force to be reckoned with, and we all know it can make us crazy at times.  But, it allows us to push on and on beyond our own and the expectations of others. The word quit, is not in our vocabulary.  I’d sit for ages, stroking Annie’s hair and whispering words of love to her.  And that’s what love’s about.

However, I would do the best I possibly could for any patient. I’d see things the same, but with less emotion and obvious personal intimate contact.

Caregiver bottom line

Try to keep things like medication, bed baths, food, and so on, on schedule. In other words, if you set up a schedule and stick to it, you will avoid a lot of chaos, and be able to provide better care.  I know that it’s not easy, but for the well-being of you and your loved one, you need to try.

I wish you the best.

(Lead in picture-Annie, Melissa and me)

Annie’s Beautiful online memorial

Grief: loneliness, some things aren’t meant to be

Grief: loneliness, some things aren’t meant to be

Five years post Annie’s death, I still can’t accept what I know I must. The loneliness just hangs around me like a fog. Although the darkness has subsided,  I feel like I’ve been wandering in overcast skies now, for what seems like an eternity.  And perhaps it is, or will be.

When you’re living alone in what was supposed to be the glory days, full of fun, laughter, and retirement with the one you love, how could everything go so wrong.  In a soft voice — I don’t know.

As I look ahead, what do I have to look forward to. Yes, I have two daughters that have blessed me with some beautiful grandchildren, but what does that mean. It may provide some comfort in the middle of a storm, but it doesn’t fix anything. The void I feel is real, and can’t be replaced by the love of family. It’s a totally different love.

People say, “Bob, love is out there, you just have to find it.”  “No it’s not! Well maybe.” But there can never be another Annie.

When I lost my dog as a child and I cried, I was simply handed a new dog that was somehow supposed to make things all better. Sometimes a simple, but at the time logical solution to a problem, just doesn’t fix anything.  Certainly not a broken heart.

And I’m finding that out in a big way. Losing in love, during a long term committed relationship sets in motion a complex series of events that will bring even, the strongest person to their knees. Consider this. My planned future with Annie was swept away prematurely, and after suffering from a long and difficult grieving period, I’m now dealing with the loneliness which is slowly absorbing the time I have left here on earth. And I don’t believe for a second, I’m lacking in the wisdom needed to figure my circumstances out, as I think I already have.  Perhaps, there is no way out.

I know I could find some happiness in the moment from dating, and perhaps I will. But I’d never use dating as an illusion for happiness. Meaningful happiness takes time and a lot of effort to become special.

My marriage to Annie was for 39 years. Doesn’t it follow, that in most cases in today’s world, a couple that stayed together that long, had figured love out. Love is very complicated and can take years to nurture and mature. All the ups and downs, the struggles, and simply daily life can be challenging at times. But no matter what we went through, we loved each other through it, and because of that we were due to reap the rewards of a forever marriage.  And believe me, when you reach that point and you are still in love…What a wonderful world. Being together, loving and sharing in life until the end. That’s priceless.

However, sometimes fate intervenes, and “Life Happens.”  That was our case. It was, and is still totally beyond my comprehension. We’re talking about life here, and the effects the loss has had on the survivor of a couple, that appeared to have paid their dues to society and were preparing to reap the benefits during the final chapter of their lives’. But instead of retiring together, I’m left writing stories and trying to figure out why, some things aren’t meant to be.

A friend of mine that I respect, said to me recently;  Bob you need to understand and come to terms with what happened.  And I say, “if it were that easy, we wouldn’t be having this conversation.”  You see, he’s not in my position, even though he’s been married to his wife as long as Annie and I were married. I wonder what he’d say if it were he, that suffered the loss instead of me. The truth, is part of the problem. If loneliness was a disease, and if one thousand or fifty thousand folks got the same disease, it will act differently in each one of them, although the treatment may be the same. But what works for some will not work for all.  There is no magical potion or pill that will make the loneliness go away. And yes, it will vary in degree of difficulty from one person to another. The more you love, the more you lose, in love.

Of course, after a loss most folks don’t spend every waking hour of their life in loneliness. And nor do I.  But it’s always there, hiding, often times in plain sight.  When I see a mature couple holding hands, or having a gentle kiss, it makes me take a deep breath, and the loneliness starts creeping back in.

So, if I were to get into a relationship, am I looking for love, or trying to quench a thirst — loneliness. That’s dangerous territory for me, and as I don’t want to hurt anyone or get hurt, it’s difficult to be that guy.

Here’s the thing.  When a person is grieving, contained within the “grief ball,” there’s many emotions.  One prominent emotion would be loneliness. Over time, as the “grief ball” starts breaking down, emotions start gradually drifting away. In my case, there was one that stuck around after the grief.  Loneliness. In my opinion, due to the chaos of the black whole caused by grief and its ability to suck me and everything around me down it, when grief dissipated, loneliness was still there. Why! Because like grief, it can also be a separate but core product of your loss, and serves as a reminder that it “ain’t” over until it’s over.  When loneliness is intermingled with grief, the grief can be very intense. But as I found, there’s a difference between the two emotions and fortunately my grief has dissipated.

In conclusion, no matter how difficult your journey turns out to be, never give up on love. I haven’t, and I don’t have a clue when things will change for me, but I know they will over time. And when they do, I shall capture the moment.

I love people and appreciate all the advice I get.  But some of you know what I know, sometimes through no fault of our own, life can get very complicated over a loss. Consequently, we glean a new perspective of what life is all about, which makes our journey a bit more difficult and at times logic does not apply.

Always remember, our journey post loss should always be about life and living our lives to the fullest. We’ve seen the alternative, and I for one am not ready for that.

Shawshank Redemption:  “Get busy living or get busy dying.”  It’s your choice, choose wisely.

Annie’s beautiful online memorial


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

Grief: now I understand, Nostalgia

Grief: now I understand, Nostalgia

There’s not much worse in life, than losing someone we love, as we lose so much. That was my case when I lost Annie. However, sometimes it’s nice to sit back, go over a few of the memories you shared with your loved one in no particular order and just reminisce.  Yes, it might bring on some tears, but that’s okay, you’re healing a broken heart.

It’s been five years, four months, since Annie passed and I’m just now getting to the point where I can relax, look back and share my memories of her, with me, without all the darkness and sadness.

My intention is not to write a bunch of sad tidbits, although there may be a few. This is simply me in the raw, sharing whatever comes to mind. And I’m going to use the old term “KISS,” meaning, “Keep It Simple Silly.”

Just remember, when you get to this point in your grief, although you may grieve forever, you are a survivor. Being able to mix the good memories with the not so good ones and keep things coherent is remarkable, and stable.

Nostalgia

I could write forever on this subject, but I’m just going to write things as they come to mind.

I wish I could see you, just one more time.  I’d like to talk to you, hold you, love you, perhaps whisper in your ear, if only for a moment.  “Precious love.”

misty english coastThe days we spent walking along the beach, the mist, the rain hitting us in the face, the skipping of rocks on the sea, the laughter. “So beautiful.”

Waking up in the early morning to the lovely smell of brewing coffee, wondering where you were, then gazing out the bedroom window, only to see this lovely lady in a muted maxi dress with pig tails picking flowers from our garden for our dining room.  “So sweet.”

I’ll never forget the night you were in the hospital and we were lying on your hospital bed together.  You weren’t feeling well as your blood counts were low and I was worried because tomorrow was your birthday and I had a surprise birthday party planned for you that evening in the hospital. Then around 8 P.M., out of  nowhere this short stocky man in a long white trench coat entered your room. It was your oncologist with words so powerful, emotions just flew from our bodies.  Ann, I have some good news for you. “You are now in remission.” We cried together that night, and you received one of the best birthday presents ever. “So Blessed.”

The night you were fighting cancer and laying in your hospital bed in our living room.  I asked you to tell me a story. You told me about the night we met, how you’d been watching me in the club, but didn’t approach me as you didn’t think you had a chance. And I revealed to you that I’d been watching you too, but didn’t approach, as you had a date. Then you laughed, and said you were so happy I rescued you that night. Strange, how life happens. I remember the night well. I walked out into the hallway heading for the restroom and saw you talking to my friend Jay. I quietly walked up behind you and listened to your conversation with him. When you told him you were not happy with your date, and asked him if he’d take you home, I spontaneously spoke up, startling you as I whispered in your ear, I will. You turned around, gave me the most beautiful smile I’d ever seen, grabbed my hand and we ran out of the club together like a couple of teenagers, hand in hand. We then took a drive to a lovely four bedroom Victorian house in the English countryside, where me and my three buddies lived. I left you sitting on the couch while I went to the kitchen to get us a drink. When I came back you were gone. I searched the house for you, and when I couldn’t find you I went into the living room and sat back down on the couch, thinking, what a strange girl. I thought you’d left as the front door was ajar. You really scared me when you stood up from behind the couch and put your arms around my neck and said “Boo.” I loved you from the day I met you Annie.  And we never looked back. Thirty nine years later, you were gone. The Year was 1971.  RIP-2010.  “So tragic.”

Taking the train to London, “klickety-klack, klickety-klack” all the way, as the wheels turned. It was late November, the frost was in the air, as we took our two young daughters to see the magic of Christmas as, the light switch was turned on and the streets of  London lit up like a colorful story in a Fairy Tale.  The people were everywhere, festive times, Christmas shopping and the aroma of Hot Cross Buns was filtering through the crowds from the many vendors baking on the street corners. The crown jewel was, the vendors roasting chestnuts over open fires, so delicious and they kept our hands warm too.  “So magnificent.”

Telling you I was going outside to clean our vehicle, then seeing your smiling eyes, the look of love with a thought, I’ve just been busted. Opening the back of the vehicle and pulling out shopping bags full of new clothing, you didn’t hide so well. Bringing them inside to your laughter, and hearing you say in your native voice, “I couldn’t help me self.” “So special.”

The look on your face when I walked into the house with two heavy suitcases full of your favorite things. Vintage costume jewelry I purchased while picking. Your eyes lit up like a Christmas Tree when you opened the cases and saw the sparkling little treasures inside. You hands were going from one piece to another in rapid motion, your mind was having trouble taking it all in, sort of like a scene out of the land of  make believe.  “So magical.”

Your first trip to America back in 1972.  As we flew low through the early morning El Paso Texas sky, the rays of sunshine just starting to show, your eyes were glued to the windows. When I asked you what you were looking for, you said, all the Cowboys and Indians on their horses like we see on the Tele back in England. You were so naive.  “So disappointed.”

The night you were in the hospital lying stiff in your hospital bed, arms down by your sides.  You were hallucinating a bit from mainlining dilaudid-much stronger than morphine.  You heard this continual noise down the hallway and asked Melissa if you were dead, and she said no, you’re not dead momma.  You said, I am dead, I know I am. As the noise got closer you became more convinced that you were dead and as the noise got even louder and closer you started proclaiming, I can hear the hearse, I can hear the hearse. And when you heard it stop in front of your room, your eyes opened like saucers as the door to your room opened and the nurse brought in your food tray. You looked straight into her eyes and said, I’m not dead, am I.  She just laughed and said, no, you are not dead. In turn you started laughing, saying, aren’t I silly. “So relieved.”

It was New Year’s Eve in England, many years ago, when we were young. We were trying to make plans for the big party night when you abruptly inserted these words into the conversation…I’d like to spend the evening at the old folks home celebrating and having a laugh with them. And laugh the night away, we did.  “So Fun.”

daffodillsWhen I was giving you driving lessons in my new VW Beetle, your mum was in the back seat. We were flying down the A-12, you had both hands on the wheel, while I ate from a large bowl of popcorn sitting in my lap. As we approached a large round-a-bout you got confused on which way to go, and with traffic coming from all directions you decided to keep going straight. We hit the curb head on, as we flew through the air all of us got covered in popcorn, and when the car came down, you still had both hands on the wheel with a serious look on your face as you plowed through the Spring Daffodil’s and Tulip’s on your way to the other side of the round-a-bout. As we flew off the curb you were in the correct lane and just kept on going, looking at me as if to say in the language of the day, “it ain’t nothing but a thang.” Your mum was howling with laughter in the back seat, encouraging you to keep going with every laugh. I tried to get you to stop the car, but a voice in the back seat said, leave her alone Bob, she’s doing “bloody” good.  You did fine Annie, we lived. Great memory. “So crazy.”

In the eleventh month of your journey with cancer you were in the hospital and nearing the end of a particularly bad two week patch, from your stem-cell transplant, where it was touch and go every day. Then the day came, I got the word that I could take you home in a couple of days with the instructions that I had to protect you from falling at all times.  Your platelets were critically low, your blood was not clotting very well.

I wanted to do something special for you, and knowing you loved to shop and hadn’t been in eleven months, I asked the charge nurse if I could take you shopping in the little gift shop down stairs.  She said I could, but be very careful. I came in the room and said, I have a surprise for you.  With your little excited smile and the eyes of anticipation, I told you my plan. It was rather like opening Pandora’s Box and letting out a world of inspiration. It took you close to an hour to put your make-up on, get dressed, and place your Pink NY Yankees hat on your shinny bald head. You looked so cute, and at that moment it started sinking in that even beat down cancer patients need to be loved and made to feel special.

As I wheeled your wheelchair down the hallway to the elevator, every person or nurse we passed, you excitedly proclaimed, “I’m going shopping.” As the elevator reached the bottom floor, the door opened and I pushed you out, and for that moment in time, Annie, you were free from all the pain and suffering as you left the world of cancer and entered the beautiful world of shopping.  As we approached the quaint little gift shop, you zoned out as we neared the metal racks adorned with beautiful clothing.  You purchased a pink and a blue nightdress. Both were covered with colorful ice cream cones. You were so excited, and seeing you pick out those so, not you nightdresses, gave me a clue that you were indeed making the great escape from the world of cancer. As we entered the gift shop, your new enthusiasm created an abundance of chaos for me and the attendant. You kept seeing things above your head and as you tried to stand, I had to place one foot behind the back wheel of the wheelchair to keep it from rolling backwards and balance you with my hands and arms.  You wanted to buy a “pressie” for everyone you knew. I was so in love with you Annie, I just wanted you to go for it.  And you did.

On the way back upstairs as you passed the nurses you’d say, “look, I’ve got a little “pressie” for you.  You gifted so many people, and it was wonderful seeing their eyes light up as you gave them a “pressie.” Your beautiful kind spirit just seemed to radiate love everywhere you went.  After we got back in the room, I remembered a red sparkly clutch purse you wanted to buy, but didn’t. So I snuck downstairs and purchased it. When I came back into the room you saw the purse in my hand and got excited all over again. You remarked, “See!  You’re as bad as me. You like to shop too!” I just laughed and said, “Secretly I’ve always wanted a red purse Annie.” You loved it and laughed so hard, saying, “You are crazy!”  “Annie, thank you for being my wife.”

Annie and I were living in the insane world of cancer, and anything I could do or say to make her laugh was so important to her emotional stability.  She was my bright and shining star, and I loved her more every day. She was so helpless, defenseless, and precious. In my mind, she was a gift, and I was beginning to understand love in a way that many people never will. As I was starting to find, true love penetrates deep into your soul. There is no anger and no resentment. It isn’t conflicting and I found it very spiritual. It seemed my goal in life was to keep Annie safe, and to share every minute I could with her in happiness. I always loved Annie, however, I had to realize and accept that I never really knew the true meaning of spousal love until now. As chaotic and sad as our lives were, we were always taking the time to “Smell the roses.” Sometimes, we would look at each other and laugh for no reason. We’d both found true love, but what a price we were paying.  “So Amazing.”

baby in a blue blanketIn May of 1973 you were 9 months pregnant, your mum had flown over from England to be there when the baby was born. After over a week and nothing happening with the pregnancy, we decided to get you to drink a bottle of Castor Oil and take you on a ten mile drive across a rugged mountain road in our VW  Beetle, hitting every bump on the way, trying to induce labor. That was so much fun and we all laughed so much that day, I think your mum wet herself a bit. Two days later the labor pains came, your water broke, and you were placed in a birthing room at Seaside Hospital. Your mum and I were only allowed to sit outside in a hallway waiting area while you gave birth. After the birth, the nurse said we could go look through the 5×5 window in your door but not go in. I became emotional and started crying. Mum and I kept banging our heads together trying to have a look at you holding the baby through that silly little window.  All we could see was what appeared to be a baby wrapped in a blue blanket. I eventually entered the room first and walked straight over to your bed. When I looked into your eyes I was so mesmerized I, just couldn’t stop staring at you. So amazed at the gift you’d just given me. I hadn’t yet looked at the baby, but you got my attention when you said, “well, look at her then!” I don’t know why they wrapped a baby girl in a blue blanket, but I didn’t care. I was overwhelmed with pride and love looking at you and this little miracle we produced. When I asked you what name you’d decided on you said, Natasha Sunshine. Mum being older and not of the hippie era interjected herself into the conversation and said, that’s a silly name, and to her she looked like a Melissa. So out of respect for mum we let her name the baby girl, Melissa Ann.  “So precious.”

Then there was the afternoon–I was wheeling you out of the cancer center to the elevator. As we approached the elevator, the doors seemed to magically come open, and the first thing I noticed was two tall, very well dressed men inside, one on each side of the door.  As I pushed you in, while turning your wheelchair around to face outward, I said rather loudly and abruptly—“Don’t worry Annie, I’ve got your purse!” My gosh, the elevator exploded with laughter as you and the two men lost it, in laughter.  Traveling down the three floors was a moment in time I shall never forget. As the doors opened the men were still giggling, one man walked away, the other stood outside the elevator and waited for me to push you out. He looked at us, his eyes flipping from me to you while saying, “Thank you, I needed that.” “So inspirational.”

The paragraph on Annie’s first shopping trip in a year didn’t actually end there. The next morning she had a few hours before I took her home.  So I asked her if there was anything I could do for her while we waited, thinking there wasn’t.  And that question was a typical caregiver trap.  She said is a bashful way, “I fancy a bit more shopping.” So with a grin on my face, I got permission, and took her shopping again.  Over the two trips she spent close to nine hundred dollars, and when I casually mentioned that to her, she said, “I don’t think about all the money I’ve spent, I think about all the money you saved over the past year when I couldn’t shop. “So priceless”

In closing this article out, it would be appropriate to add that Annie was an impact patient.  She had a profound impact on the doctors, nurses, medical personnel, but more importantly she was a true inspiration for other cancer patients. The world of cancer at the cancer center and in the hospital is like a small community, where it appeared there were not many secrets. They all wanted to tell their story if given the chance.  And Annie was always a willing listener, and would even cry with them while reaching  her little toothpick arms out and hugging them, never wanting to let go.  She would take on the burdens of others, saying, those people are really suffering. She wanted to save them all, but in the end we couldn’t even save her. She made many friends in the cancer world and many of them died.  My hope is that they are all together having a good time in the afterlife. “Perhaps.”

Annie’s online memorial: Over 75,000 visitors. If you’re dealing with grief or anticipatory grief it will help you.


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

Caregiver: Annie died of cancer, it’s now my turn to fight the beast

Caregiver: Annie died of cancer, it’s now my turn to fight the beast

There’s so many ways I could write this story, but as a newly diagnosed cancer patient of a few hours ago, I’m going to throw the words out there and see what sticks. I really don’t know what to say, but know I need to say something.

It seems like an eternity ago, that I was sitting in the room beside my wife Annie and heard these tragic words.
Ann you have multiple myeloma, cancer of the bone marrow. It’s terminal, metastatic, treatable, but not curable. And so it was.

During her 30 month battle with cancer, I really didn’t have much time to look back and think about what she must have been feeling on the day of her diagnosis. I’m sure her world was spiraling out of control, but, I guess my question has always been, what does it feel like emotionally to be told you have cancer. I’m going beyond all the trauma, pain, and suffering. I’m talking about the word “Cancer.”

Does the word “Cancer” send shivers down your spine? If it doesn’t, you’re like I was prior to Annie’s diagnosis. I’d never know anyone with cancer, and therefore, had no respect for it. Big mistake!

Malignant Cancer is a total nightmare, an evil entity unleashed on an unsuspecting person. Didn’t see it coming, didn’t know it was there, until it was too late. It will come at you in the night, like a stranger in the dark, and terrorize your world in ways you cannot imagine.

Cancer is the master of deception. Just when you think you have it under control, it comes back for another round, then another, always reminding you that it cannot easily be controlled.

Cancer it the master thief. It loves cars, trucks, houses, bank accounts, white picket fences, and just about anything you own. Eventually, when you’ve had enough and feel you have nothing else to give, you fall to your knees in despair, and that’s when you learn one of life’s most valuable lesson. All those material things meant nothing, as you watch your loved one slip away into the night. That’s how it was for me.

This is how it is now.

At 4:00 p.m. I arrived at my urologists office to get the results of my 3 February 2016 prostate biopsy. As I sat there and the big clock on the wall kept ticking away, one second at a time, turning to one minute at a time, then it hit the one hour mark. That’s when I knew I was in trouble. I had read somewhere that when the diagnosis is bad, they will leave you until you’re the last patient, allowing them to spend as much time with you as you need. And that’s very important. (Of course that would not apply at a cancer center where their making diagnoses all day long.)

Five years, three months, and a few days post Annie’s death, I was diagnosed tonight, 17 Feb 2016, at 5:30 p.m. with prostate cancer. My cancer is malignant, but unlike Annie’s it appears we caught it early. Out of 12 core samples, biopsies, 6 were malignant. So the left side of my prostate is laced with the cancer. This week or next their going to do a genetic test on my cancer cells to see if the cancer is aggressive or not. They don’t think it is, but apparently the pathologist kind of left it at, it’s too close to call. I’ll be seeing a radiology/oncologist in the next couple weeks or so, and he will advise me on the proper course of action on controlling and perhaps killing this cancer.

Question answered: How does it feel to have cancer?

One of my first thoughts was fear of the unknown. Do I really know for sure what’s going to be the outcome? No! I really don’t. And that’s all because I know cancer. What you or the scientists think you know, as I’ve learned through Annie’s journey, may be far from the truth and what cancer has in mind for you. I know, cancer doesn’t have a mind of its own, but it sure pops up or spreads to places where it would not normally be expected at the early stages of the disease. So I’m not taking anything for granted. I’ll know more when all the testing is done.

Just knowing the cancer is there, well, my first thought was, I just want to take a knife and cut it out. Ouch! That would hurt. But, it is the reality of the mind. It’s like something full of dread and nasty has invaded my body. I don’t like it, don’t want to deal with it, but if I don’t there will be consequences down the road. And I don’t want that, I know all too well about the consequences.

When I was a youngster, my mom used to say to me, you look so much like daddy, her father. He was the grandfather I never met. You see, he died in his fifties from a ten year battle with prostate cancer. At the moment I wish I wasn’t so much like him. Still, it gives me hope knowing that he fought the battle with the beast in the days when medical care was pretty grim, so he obviously had a slow growth cancer. And as the story goes as told by my beloved mother, her daddy was a man with means, and they had everything they needed growing up, until he got the cancer. Cancer took it all.

I wrote in some of my blogs that when Annie was fighting cancer she was always teaching me things, and that she was a gift that just kept on giving. I’m so glad I paid attention.

As a first time caregiver, my wife Annie had to bear the burden of my lack of knowledge. But, I learned fast, and thanks to today’s modern technology some of the big words thrown out were easy to decode.

Yes, I’m entering the world of cancer once again, but this time I won’t be deceived or fooled by the beast in the room. I’ll know when I need fluids, what normal blood counts are, what I need to do if I have low immunity and get a fever, or develop shallow quick breathing, and so on. I just about saw everything there was to see care giving for Annie. So there should be no surprises. Cancer is cancer. Once all my initial testing is over I will know exactly where I’m at and what I need to do.

Annie’s journey was always about dying, as there was no way she was going to survive her cancer. My journey, as I understand it at the moment is going to be about living, as I have an opportunity to beat this cancer if I am blessed. Anytime you are fighting cancer, always remember, cancer is the enemy, it’s real, unpredictable, can be difficult to control, and it will hurt you if given the chance.

When I was preparing to leave the doctors area and standing with the doctor and the nurse, he told her to give me the prostate package. When she handed it to me, it was a big white closed container full of all kinds of information on emotions, dealing with the diagnosis, prostate cancer and a sundry of other things. After glancing at the booklets, I handed it back to her and said I would not be needing it. The doctor looked at me and said, something to the effect, you’ve already been through cancer with your wife.

Yes I have, and she had one of these packages. The packages are invaluable to a new person entering the world of cancer, and I learned a lot about nutrition and so many other things. But, some things you never forget when you caring for a dying loved one.

bobann5

Because of Annie.


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

Grief: imagination & the truth

Grief: imagination & the truth

Tonight I was looking through my cell phone family text messages and noticed something I guess I always knew, but had never given much thought. There is not one message of any sort on my cell from my beloved Annie. It appears that I’m searching for memories from the past, a part of my life that will never be forgotten, but is gone forever.

Yes, there are pictures, and although it’s said that a picture speaks a thousand words, a griever knows the truth, it doesn’t say anything. It’s just a picture, a memory of our loved one from days gone by, that now becomes part of our past.

Some of us grievers have the ability to use our imagination, to go to a place where reality and logic doesn’t apply. It’s a world of make believe where anything and everything is possible. And of course, we dream big…We want it all, if only for one last time. Here’s how it works.

The make believe world

You’re busy going about your daily business, always battling your grief and getting by as best you can.

You’re startled by a sudden outburst of noise. “Oh, it’s just the phone.” “Shall I answer it.” “No.” “I don’t feel like talking to anyone at the moment.”

And then it happens. You hear this voice in your head, “wait a minute, it might be you loved one.” And as you race to the phone, not realizing it could not possibly be your loved one, the ringing stops.

Your thinking, “oh no!” “I missed the call.” In your bewilderment, perhaps you pour yourself a cup of coffee, a drink, or just sit down, staring into space thinking of what might have been if you’d answered the phone.

By now your imagination is in hyper drive, and that’s when you enter the pretend part of the make believe world.

You’re now excitedly dialing the phone, waiting in anticipation for your loved one to answer. Your internal voice is now shouting out, I can hear the phone ringing, and with a sigh you think, oh, I so hope my loved one answers. And all the while your mind is becoming more and more overloaded, as you feel the panic rushing through the blood in your veins… “What will I say to my loved one?”

Alas, you come back down to reality and realize it’s really over. Your life has changed forever and can never be the same. And now you’re trying to wrap your head around all that is going on at the moment, and all that has happened. Believe me, it’s no easy task.

When you find yourself lost and alone in a world of sorrow and sadness, and you’d much rather be sleeping than awake in your misery, that’s how it was for me. Even when asleep, I often dreamed. Some of the dreams were good and sometimes they were nightmares with an occasional night terror.

And it is hard. Grief will wear you out. But hang on, and don’t give in to all the deceptive illusions grief will throw your way. Become self aware, understanding that things aren’t always as they seem. Yes it’s bad, but it will get better in time and life will return to balance once again.

Here is a simple definition of grief: A deep sorrow, especially over the death of someone we love or hold dear.

Look at these words and see how many you can identify with. If you are identifying with them all, you are in the throngs of a very strong and probably aggressive grieving period. And as with me, it can last for a very long time.

As synonyms, these words by definition can piggy back off each other as they have nearly the same meaning .

But to a griever we can easily separate these words, each falling into its own unique category in, our own emotional puzzle we call “grief.”

The words describing grief

synonyms: sorrow, misery, sadness, anguish, pain, distress, heartache, heartbreak, agony, torment, affliction, suffering, woe, desolation, dejection, and despair;

As I looked at the words defining grief, five years post Annie’s death I can remove all the words from the list, with the exception of sadness, heartache, and loneliness (which is a part of desolation). Although, I may feel the other words from time to time, they aren’t a problem anymore. Just a small bump in the road of life.

I’ve came a long ways since Annie died, but the healing process will most likely continue until I leave this mortal coil we call earth. I say this because I believe the, timeless statement that we don’t ever really get over our grief we, just get through it is, fundamentally true.

a smartphone on a table next to an empty cup of coffeeHonestly, if I’d looked at these words even a year ago, I could have capitalized them all. So it does get better and as we’ve all heard many times over, it just takes time to heal, being steady as we go, putting one foot in front of the other.

From my experience, when grief starts to dissipate it happens rather quickly. What I believe is likely to remain with you is, what remains with me as I’ve state above, sadness, heartache, and loneliness. It’s not nearly as overwhelming as the grief was, but it will be there to serve as a gentle reminder of your loss. When you feel that little ache in your heart, “Lest we forget.”

I wish you all the best.


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

Grief: time stands still

Grief: time stands still

One of the most painful experiences a loving caregiver will ever witness, is the dreaded moment when time stands still, and a loved one slips away in front of your eyes. Sadly, there’s nothing you can do to comfort the burden of your pain. It’s there, it’s real, and the grieving process that’s already firmly entrenched in your mind, will begin in earnest. Grief’s arrow will pierce your heart.

Metaphor

This is not how it happened to me, but in a sense it is. And if I didn’t know the truth, I couldn’t speak it.

Internally or vocally you’re screaming out in pain, but no one knows the depth of your sorrow, but you. Everything around you becomes an illusion, where it becomes difficult to process the real from the unreal. You know you saw your loved one pass, but in your mind it’s a case of, “maybe it just a dream.” It didn’t really happen, did it?

You find yourself standing on the edge of a cliff, not sure which way you’re going to fall. You become frightened, you’re lost and don’t know what to do, and then it hits you, this is real, as you fall back into a chair mumbling the words, “I just want my loved one back.”

The pain is excruciating, the fog of death is thick, and you’re slowly coming to terms with the fact that “life as you knew it has, changed forever.” There’s no going back, the care giving for your loved one is now over, and I can honestly tell you from experience, you’ve just traded one nightmare for another.

In my case, being a caregiver for my dying wife Annie was a nightmare. My anticipatory grief was always present, and in the forefront of my thoughts. She so wanted to live, but was not afraid to die. I guess I just wanted her to live, and having to let her go at the end, was beyond my understanding of how life was supposed to be. The emotional drag put on my life by viewing her death has not been good, and doesn’t create a good last memory. The medical personnel telling me how peaceful her death was, by noting the lack of stress on her face, meant nothing. She was just gone!

Oh sure, all her pain and suffering from the cancer was gone, and her nightmare was over, but for me, my nightmare was just beginning. And that may sound a bit selfish, but grievers know, “it’s the truth.”

There’s no second chance to say I love you, fix her a nice meal, or to do the special things for her that sometimes made her day. This body that was continually in motion for thirty months, was now at a standstill. It was like being on a merry-go-round for thirty months, going round and round, never stopping. Then it happens! The merry-go-round stops, and you can no longer stand, so you fall to your knees, head still spinning from all that you went through. And when you finally raise your head and look up, what do you see. In my case it was darkness, laced with a lot of chaos from fear of the unknown. Which is the same fear I, and most likely you felt when care giving and battling for your loved ones life. You are now back on the merry-go-round, but this time it’s different, it’s the merry-go-round of grief!

This is my fifth year post grief and I’ve written thousands upon thousands of words on the subject, but this post was truly meant to be about that moment in time, “When time stands still.”

Still, I need to say this: If your new to the world of grief, or been a griever for awhile, the most important advice I can give you is to not hold back your emotions. You must let them flow. Your tears are your best friend, and if you’re like me, you may cry a thousand tears, think you’re getting better, and cry a thousand more. You’re a griever, where logic is simply a state of mind, which may or may not play a role in your healing process. If you’re feeling locked up, get the photo albums out and start browsing through your pictures. That will allow you to revisit old memories which may get your tears flowing again. I’ve said this before, you have to grieve to get through grief.

Journal your thoughts, or simply jot them down on a piece of scrap paper with a date. That’s how I tracked my grief. I could look back over a year or two and proclaim, “wow, you were really messed up dude!” Not realizing I was still messed up, just not as bad. I was healing. And I knew it based on old notes I’d written. And the photo albums, well, when you can look back on the old memories, and the emotional rush doesn’t hit you so hard, or the tears fall in more of a random pattern, you are healing.

I’d like to share something with you, that a stranger recently posted as a tribute on Annie online memorial.

As you read the tribute, think how important “Your Story” would be to others. All grievers have their own unique story to tell, and think of the people you could touch, and perhaps help by sharing your journey through grief. And believe it or not, over time it becomes refreshingly healing.

Tribute

“I can never thank you enough for sharing your journey with us. The help you have extended goes way beyond the readers and posters here. So much to say, but for now, adding what Henri Nouwen said in OUR GREATEST GIFT, our “fruitfulness” lives on way beyond our passing; it is then at its greatest.. There is no greater love than sharing the dying process with the dying. Nothing harder. Should Nouwen be alive today, you and Annie would be added to an updated version of Our Greatest Gift. What a gift that you have given to us, especially me.

God’s peace always..”

Henri Nouwen, was considered one of the great writers of our time. A Dutch Catholic priest, professor, writer and theologian. His interests were rooted primarily in psychology, pastoral ministry, spirituality, social justice and community. Henri passed away in 1996. Wikipedia

Annie’s memorial: www.forevermissed.com/annie-barber-harrison/#about

Grief: A silent killer

Grief: A silent killer

You know, I could start this article out with a bunch of fancy words and statistics to perhaps prove a point, but I really don’t need to.

This is the 50th blog I’ve posted on The Caregiver Space this year, and all are in one way or the other, either related to my wife Annie, or she was the inspiration behind them.  I lost her to a wretched cancer on November 2nd 2010. And that’s why you will see the words Because of Annie attached to the top of all my blogs.

Annie’s journey through cancer was very difficult, and the truth is, she was always dying a little more each day. From the moment of her diagnosis/prognosis, which was, “we can’t figure out why she is still alive,” but she may have “three to four weeks.” Imagine trying to wrap your head around that grim news.

And I get it, when someone says, “why would you post this blog during the holiday season when spirits are running so high.” My answer, “why wouldn’t I.”  You see, I’m now thankful for what I have, which to me is the gift of having the ability and platform to share stories and events that are happening to caregivers every minute of every day, and don’t magically disappear during the holidays. I say things that many folks are thinking, but don’t want to talk about. I call it “The Truth.”  

And the truth is, none of the serious illness we get are discriminatory.  I don’t care if you’re a Republican or a Democrat, a lawyer or a doctor, rich or poor, black or white, it just doesn’t matter. Many of the serious diseases will level the playing field for all, and can bring you down no matter who you are. And you will most likely need a caregiver.  Someone like me that truly does care for your well-being regardless of your status in life, and willing to share stories or articles with you anytime of the year. Some may just help you get through a rough patch.

Caregiving is like going on a journey where no person has gone before. Why, because if you haven’t been through the experience, you can’t possibly understand the concept of just how difficult being a caregiver can be.  It will take you to places where you don’t want to go, and having you doing things that you don’t want to do. Your emotions will get very elevated at times, and your stress level can be at the top of the charts.  In essence, stress from being a caregiver can, and if not controllable, create a very unstable and unhealthy lifestyle.

Stress

There are many books floating around out there on how to manage your stress.  Well they may be fine when dealing with normal day to day lifetime stressful issues, and we all have them, some worse than others, but if you think a caregiver deals with typical stresses, think again.  

Enter the caregiver for a terminally ill loved one, whatever the disease, throw in Alzheimer’s or Dementia, then you can honestly say, as did Tom Hanks from Apollo 13, “Houston, we have a problem.”  And I don’t care how many books you read on stress, they are words and guidelines that can become meaningless to a caregiver under some very challenging, and tremendously unsettling circumstances. Imagine, under the dire circumstances of Apollo 13, someone handing Tom Hanks a book on how to deal with extreme stress. I wonder what his words would have been.  Probably not, “oh, thank you.”

Yes, that was a simple metaphor, but in reality many caregivers face that scenario every day. And the truth is, there is no instruction manual or stress guide that can help you in the heat of the moment, which in truth is a moment that can be created many times a day, day after day. Tom Hanks was flying Apollo 13 by the seat of his pants, and so goes the caregiver.  We have to adjust and improvise as events unfold. And of course, making the right decisions at the time will determine the outcome of the event.  Good or bad.  No pressure, huh.

If you don’t know by now, you should know, over and extended period of time, stress is a killer. It’s a fact that, many caregiver’s will get ill and die before the person their caring for dies. And it’s usually form some sort of live or dormant disorder that is triggered by excessive stress.  

To prove my point I’m going to tell you what happened to me over the entire year of 2015, and why. It’s scary, and sneaks up on you without warning.

Extreme Caregiver

What is an extreme caregiver? Simply put, in my opinion, it’s a person that takes on the role of being a caregiver for a loved one that needs ongoing 24/7 care, which can lead to severe weight loss over a period of time, many sleepless nights, all while dealing with chaos and confusion from lack of instructions…And does it in a selfless manner, without complaint and with no regard for their own well-being.

That’s the way it was caring for Annie, as her hope for another day rested with me. There was no other choice. Annie had many broken bones from the cancer and was basically wheelchair bound, and in a hospital bed from the third week on. Just rolling her over in a manner that didn’t break another bone was a challenge.  Her bones were very badly diseased from the cancer. She was on 200mg of Morphine a day, plus a Fentanyl patch, and Percocet when needed. Her pain medication, which she had to have, was my biggest nightmare.

I knew from day one Annie would not survive her cancer, but I guess I couldn’t accept the facts as they were presented to me. So, I spoke of my fears to her oncologist about all the pain medications she was on. He was brutally honest with me when he said that he was doing everything he could to keep her alive, and my job was to keep her out of pain. Then with strange facial expressions he explained to me the type of pain she was in, and walked away saying, “stay ahead of the pain Bob,” then turning back to say that if I get behind on pain control, playing catch up can be very dangerous as one extra pill can lead to the overdose that kills her. I guess I needed to hear that, and it seemed to make me more determined than ever to fight for her.

It was up to me to make sure that when she took her medications, I kept an eye on her for the first couple of hours watching for shallow breathing.  If the breathing were to get too shallow, Annie could stop breathing altogether, and die. That was a huge responsibility for me, especially when trying to rest at night. I found myself continually waking up and looking at her chest to make sure she had positive air flow. Some nights her shallow breathing was so bad I stayed up all night, giving her a head massage and talking to her.

Bottom line is, I loved her and was willing to do whatever it took to keep her alive. Yes I was tired, but I knew I had the rest of my life to sleep and get rest, but in her case the days were numbered, it was not a matter of if, but when.

In a sense, my life was no longer mine. It belonged to everything I put into caring for Annie. And I would not change a thing. I loved her deeply, and whatever part of her that was not my world, became my world. My position in her life was way more than just being a loving husband.  I was determined to make sure that when the sun set, even during the dark of night, she had the best possible chance of surviving for sun rise, and the dawning of a new day.  

Grief

Thirty months after diagnosis, Annie passed. She died with the same grace she fought cancer with. She took me on an extraordinary 30 month journey, allowing me to see what a precious gift she was to me, while helping me understand love in a way that many people never will. I discovered, that for that moment in time, true love penetrated deep into my soul, there was no anger, no resentment, and I found it to be very spiritual. It seemed that my goal in life while caring for Annie was to share every minute I could with her in happiness. Despite everything cancer had in its arsenal to hurt Annie with, we fought back on a daily basis, and we had some fun.  

Annie’s journey through cancer was never about living, it was always about dying, and a caregiver man and his beautiful wife that simply refused to throw in the towel. We literally fought until the end.

When you consider what I just said, when Annie died it was like I hit a brick wall doing one hundred miles an hour. I was totally lost, swallowed up by darkness and despair.  I just wanted her back. Nothing else mattered.  That went on for about three years, day and night.  I didn’t know from one day to the next if I was coming or going and for that matter didn’t really care.  Over a period of  the 4th year the pain started easing considerably, and I was starting to feel alive again. So I thought.

Stress related illnesses

The year 2015 was the worst year of my life for healthcare issues. I was never a sickly person, and all through Annie’s illness I never even had a sniffle. My four years of grief were not quite uneventful.  I was put on heart medication to control heart palpitations that started a few months after Annie died.

A few months after Annie passed I went to see my general practitioner for a physical. The only problem he found was low vitamin D.  Still, his lingering words,  “Bob, there will be consequences for your extreme caregiving, they just haven’t reared their ugly head yet,” still ring in my head.  I think his thoughts at the time, followed by 3 years of intense grief,  and the 4th year spend  coming down from grief, created the perfect storm in 2015. My immune system broke down from all the stress.

In January of 2015 I had my annual physical. All my red blood cell counts were abnormally low. The low blood counts were later on diagnosed as being caused by moderate to severe Gastritis with anemia.  Also, I had two separate lung infections with inflammation, requiring steroid treatment, followed by shingles. Then out of nowhere, came a high level of full body inflammation which triggered a search for tumors in my body.  The inflammation in my body cause me to have what I called the perpetual flu, every day for 6 weeks. My general practitioner asked me if there was any place in or on my body where I didn’t hurt, I said, “my feet.”  He kind of laughed as he left the room.

It’s been a long year for me.  The low blood counts and inflammation triggered so many tests, I felt like a pin cushion. I’ve had a heart catheter, colonoscopy, gastroscopy, x-rays, and a sundry of other tests. Plenty of antibiotics, steroids, pain pills for shingles and so on. It was simply one thing after the other spread out over the year.

It seems like I’ve weathered the storm for now, but I have some more testing in January. The good news is, I don’t have auto immune disease, the bad news is, my full body inflammation can return at any time triggering another round of shingles and other illnesses.  

I’ve climbed a mountain of health issues this year, but caring for Annie taught me how to fight through illnesses that to her would have been commonplace.

The answer, Caregiver=stress, Love=stress, Pain=stress

Under the circumstances as I presented them above, I don’t believe there is an answer to stress relief. Problem is, if you really love someone, when they hurt, physically you can’t feel their pain, but in your heart you certainly can and will feel their pain.  

When my wife Annie was standing beside me and I heard her right femur snap and her hip break, and the audible sound of pain, all I could do was catch her as she was falling. Where do I put that! When she was put on the ventilator for 5 days fighting double pneumonia, sepsis (blood poisoning), and swine flu, I was told the odds of her surviving this event were incalculable. Where do I put that!  The 4 or 5 times the doctors told me that Annie would probably not survive the night, where does that go.  These types of events were a main stay of Annie’s illness.  They happened often.

Looking back, it’s obvious I was living in anticipatory grief.  Not knowing from one day to the next if she was going to survive or not. So in essence, the stress was not going anywhere. It was interlocked with the anticipatory grief and went with me where ever I went.  You can’t make the feeling of doom and gloom go away and you can’t relax or read it out of your head.  It’s there, and there it will stay. You’re gradually getting sick, and you don’t even know it.  You think you are just sad.

Then, over time Annie passed. The anticipatory grief turned to full blown grief and from that point on, the stress was firmly entrenched in the grief cycle.

Three months after Annie passed I started seeing Dr. Bryant, Psychologist. The first six months I saw him twice a week, one hour a session.  Five years later I still see him on a weekly basis for an hour each session.  

I can look back on the many times, when I got back into my vehicle for the drive home after leaving his office, feeling okay, then I’d see something that reminded me of Annie and all the dark emotions came flooding back. Like I said, stress and grief are sort of intertwined, and stress seems to piggybacks off of grief.  

When I first found out I was not well in 2015, the damage to my immune system  had been occurring over a period of the previous six and one-half years. How was I to know that?  And what could I have done to fix it, if I had of known?  There is no magic potion or pill to take away ones pain. Yes, the pain can be masked through medication, but when the mask comes off, guess what, the grief that you haven’t dealt with is right there waiting for you with all its glory and stress.

Bottom line, if you love deeply, you will grieve deeply, the stress will be strong and right there with you too. Stress can be, and sometimes is, “the silent killer.”

 

Grief and Stress – HealthDay

consumer.healthday.com/encyclopedia/…/grief-and-stress-646074.html

by C Woolston – ‎Related articles

Mar 11, 2015 – Still, there is one universal component of grief: Almost every loss, no matter how expected, will be accompanied by stress and disorientation.


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

Grieving during the holiday season

Grieving during the holiday season

We griever’s know just how difficult the holiday season can be.

The season brings so many challenges with it.  The loss of spirit can be staggering.  Not jumping for joy when you get that special gift, not wanting to do a sing-song with the family, and perhaps the ability to show your appreciation with a radiant smile just isn’t there.  And somehow, the fact that you lost a loved one recently should not play a role in how your feeling during this festive season. Don’t buy into that theory.

If you don’t jump for joy when someone buys you a special gift, that’s your prerogative.  Anybody that loves you, is still going to love you, and should respect how you’re feeling.  One of the biggest problems I saw with grief during the festive season was folks trying to force behavior through gifting. I was never going to get too excited over a present someone gave me, it just wasn’t going to happen. I just wanted my pain and grief to go away, so I could enjoy life like a normal person. It takes time!

How does one prepare for the Holiday’s after suffering a loss?

In my opinion, I’m not sure you can. I mean, who wants to go shopping, buying gifts for others, while surrounded by hundreds of smiley, happy people. Not me! And I didn’t! I stayed in and used family members to help me make decisions on what, and what not to buy or do.

It’s important to understand, that for the most part grievers are terrible decision makers, and often see things as black or white, with no color in between.  And that’s because we live in the shadows of darkness and are so bogged down by sadness and often times traumatic memories, that we can’t think straight.  We think we can, but at times we also think it’s everyone else that’s nuts, and we’re the only ones playing with a full deck. And that was often the case with me over the past few years.

One day, my daughter told me I needed to go to a sports store or somewhere and buy myself a new pair of Tennis shoes. Apparently mine had holes in them.  Of course, being a griever I made a big deal out of making the trip to the store as I knew it was a conspiracy, to get me to go out and mingle with people, I didn’t want to mingle with. Which I still believe to be true.  But I went, and came home with a brand new pair of solid Black Tennis shoes.  

Prior to my grief, I would have never purchased a pair of Black Tennis shoes.  I always loved color and dress colorful. Anyway, when she came over, I put them on for her and flashed them around a bit, and she said, “Dad, why would you buy black Tennis shoes?  That is so not you.”

My reply, “why the hell wouldn’t I.”  I honestly didn’t know the light–I only knew darkness. And the Black Tennis shoes seemed to represent or reflect the darkness in my life at the time.

In December of 2008 during Annie battle with cancer, she remembered a small 4 foot vintage White Christmas tree we had in the basement, and asked me to go get it and bring it up with all our decorations. This was all while she was in her hospital bed in our living room.  She had me set the tree on top of an antique spool cabinet, where she could roll around in her wheelchair and decorate it.  And decorate it she did.

I never took the tree down and it’s been in the same place ever sense. That was one of the best decisions I’ve ever made. I couldn’t even imagine decorating a Christmas tree while in the throngs of grief. And apparently I couldn’t imagine unplugging the lights on one either. Over a couple of years the bulbs burnt out. Now my dilemma is whether to put new bulbs on the tree or not, while wondering how I could exchange them without disturbing the decorations.

Holiday seasons can be a grievers nightmare, struggling with decisions that to normal folks come easy. Some would say, just change the lights! While others might say, don’t change them, you’ll disturb Annie’s creation. That stuff rolls around in my mind continually and may sound a bit silly to many, but to a griever it can be a real and valid worry. I even thought about putting up a new tree. After all, it has been 5 years now. It would give me something to do, but it takes spirit and vision to decorate a tree, and I have neither at the moment.

I guess I’m caught up in what I call, “what’s the point, loneliness.” I’m lonely, and what’s the point!  I’m the only one here and how many times can I tell the tree, “Christmas tree you are beautiful.”

Now, if Annie were to pop in and say, “Bobby, what a beautiful Christmas tree!”  I’d jump for joy wile crying and laughing at the same time. But you and I both know she is not coming back. So, what’s the point! What I’m saying is–missing a loved one at Christmas time is the ultimate illusion when trying to be happy.  I’m lonely, perhaps a bit bitter over my loss, but please don’t confuse anything I’ve said with being thankful. I’m truly thankful for what I have and the love my wife Annie and I shared for 39 years. I had a very deep love for her and her loss has messed me up,–and in a soft voice, I know it.  Isn’t that what this article is about.

Yesterday was her birthday, and with Christmas just around the corner, I get a double whammy every year. As per normal, the month of December is difficult for me, and at least for another Christmas I shall throw in the towel and simply do the best I can. And I know many of you will be doing the same thing.

If you’re a griever, don’t let others place too many expectations on you. Like, expecting you to be happy, when you’re not. And if you’re smart, you won’t put too many expectations on them either, which might ease some of your burdens of disappointment. I was a griever for four solid years and it still lingers. I know the expectations and demands some friends and family members will put on a griever.

Annie passed in November 2010, and of course I dreaded Christmas and New Year’s for many reasons. Here’s a good example why. In December of 2010 some folks that were very aware of my circumstances, would walk up to me, shake my hand with a hug and say, “Merry Christmas Bob and a Happy New Year.” To a normal person that is a wonderful greeting. But Grievers aren’t always normal people and see life through a different prism. Our prism has more darkness than light.  It can be filled with confusion, chaos, and certainly pain. Because we can’t see through the prism adequately, we don’t see the future clearly…Certainly not a Happy New Year.

I remember the day a lady walked up to me and said, “Bob, I’d like to wish you a Merry Christmas and a Happy New Year,” but I better not, as I’m sure you don’t feel that way.  I loved it, and it made me laugh. She gave me the wishes while in the same sentence, acknowledging my grief.  Probably borderline manipulation, but very clever.

I know, that for a period of time my grief was so deep that I wasn’t right in the head. But honestly, I simply didn’t care. You know the old saying, “first you’re afraid you’re gonna die, then you’re afraid you ain’t.” That was me for a long time…I was literally fighting for my very existence. So this holiday season be kind to grievers. We all grieve differently, some deeper than others, and we may be a bit screwed up; but somewhere, locked inside that complex body of grief is a caring loving person that doesn’t want to be there, but doesn’t know how to get out.  Please, “help them.”

You own your grief

Take charge of your grief by doing only the things that make you feel comfortable. It’s a given that some non-grievers will push all your buttons in an effort to get you into the holiday spirit.  Please, be kind to yourself and don’t do what you just can’t do.  Others mean well, but have no concept of how you are feeling.  Tell them how you truly feel, and what your wants and needs are.  You might be surprised.

Some will listen to you intently and offer a helping hand, and some will say, I’m so sorry you still feel that way, and simply disappear. That’s the sad reality of a grievers life.  Try to understand, some people don’t know how to react to a downer, and we grievers can be real downers during the holiday season. We can’t help it, and we can’t change it. We can put a pretend smile on our face and appear to go about the festive season in a happy state, only to hear someone say, I wish he/she would cheer up a bit. Point is, no matter how hard we try, we can’t be what we’re not.  You are a griever and by nature, that makes you a very complex and hard to understand person from a non grievers point of view.  Stay true to yourself, be what you are, and do what helps you the most.  It can be very empowering and have a healing effect.  And that’s what’s important.

Nothing else at this moment in time should trump your healing.

So, during this fifth Christmas season without Annie, to be honest with you, not much has changed. Has my grief eased? Yes! How about my loneliness?  No!  Some things in life are not replaceable, and all the love I have for her is now becoming a superficial memory. Why?  Because I can’t touch it. I can’t hold her and feel her love, her hugs were always the best, and made life worth living and the holidays worth celebrating. That’s all gone now, my life has and will continue to change forever.

Sure, the memories are there, and therein lies a problem.  No matter how hard I try to hang on, memories fade too or get distorted over time.

The brown box

The lead in picture to this article is Annie setting in our living room a few years ago. She proclaimed her excitement over the big brown box I had carried over as if heavy, and sat down on the fireplace beside her. Although she didn’t know it at the time, it was just a gag, the box was empty. She handled it well!

So, if you’re a griever, don’t let your big brown box be empty. Don’t set yourself up for disappointment by spending your time trying to make everyone else happy through pretense. Even if you’re doing your best and think you’re doing a good job, someone invariably will come over, hand you an empty box by saying, come on mom, dad, or whoever, get into the holiday spirit.  So you can’t win even when you’re trying.

They presume to know how you feel, so the smile on your face is not real.

Just be yourself and have the best Christmas you can, by making the best out of what might be a bad situation.

Merry Christmas/Happy Holidays to all!  With Love!


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

Caregiver:  A superhero with super powers or a myth

Caregiver: A superhero with super powers or a myth

Some people are saying–if someone tells you to make sure you’re taking care of yourself one more time, you’re going to scream.

Well, the fact is, newbie caregivers don’t always know they’re supposed to take care of themselves. They’re so focused on their chronically or terminally ill loved one, and perhaps emotionally drained in the heat of the moment, or the passion in what their trying to do. They simply don’t know the rules as defined by logic.

Well, that was me! The new superhero caregiver living in the strange new world of cancer with a loving spouse. If anyone could do it, I certainly could.

The doctor said, “Bob, you are not prepared for this, are you?” Do you even know what a caregiver is?

To my dismay, I had to answer both those questions with a resounding “No.” But did that really matter? No! I didn’t care. I was naive, full of hope with a lot of optimism.

Yes, I was a newbie—I’d never had any experience with cancer or even had an understanding of what a caregiver was, but still, I was convinced I was a superhero and could do it all. After all, how hard could taking care of a terminally ill loved one be?

The first couple of months I was ran off my feet, lost 18 pounds, and was literally worn out. But with my super powers, I willed myself onward, seemingly going where no other had gone before. After all, when does a person with super powers ask for help or throw in the towel? The stakes were simply too high. Annie was dying, but I was confident that if I just fought a little harder, cared a little deeper, and became relentless in my caregiver duties, I could perhaps make a difference, and get her more time.

Then the walls came tumbling down–the monster in the room.

What does that mean? Well, cancer was all powerful and didn’t give a damn about my super powers. Cancer laughed at me, and with a smirk said, “do you really think you’re going make a difference in the end?” I’m going to take your Annie, and I’m going to do everything I can to bring you and your whole family down with her. Cause I’m now out of control, and reaching beyond anything you can possibly understand. It was a given that cancer would never lie or try to deceive a superhero caregiver, it didn’t have to. It’s sole purpose was hell bent on taking another life in any manner or form it could take on.

Pneumonia, “ain’t notin but a thang.” It’s one of cancer’s best weapons and works tirelessly to bring down the weary, the frail, the sick, always probing for a weakness in the loved ones defenses. Cancer loves handing out shingles too, leaving the loved one with dangerous and painful blisters that fester causing infection with great distress. Blood poisoning, yes, that’s in cancer’s evil bag of tricks and on cancer’s favorites list too. It’s the sneak attack, and if not caught within the first three hours or so, it’s usually light’s out. And if I really dig down deep into cancers bag of tricks and pull out some of the other weapons it used against Annie, I could add a broken hip, broken femurs, collapsed spine, broken ribs, lesions on the skull, stroke, blindness, and the list goes on and on. Cancer wanted Annie bad, but my super powers were working overtime and starting to make a difference. It was becoming a battle of attrition, who was going to blink first.

Battling the monster

Some monsters just can’t be killed, but my resolve to fight every battle on a more level playing field never waned. I worked overtime figuring out ways of identifying potential life threatening events and getting emergency intervention as the events started to unfold.

Cancer hated me…I was relentless, a body in motion, always leading and directing Annie out of harm’s way as best I could and as quickly as possible. When the monster is in the room and preparing an attack on a loved one we have to act quickly by setting up our defenses and plan on fighting for every inch of ground we gain. A simple sniffle for Annie with her low immunity, immediately provoked a reaction in me and started me drawing the battle lines for our next fight. My first defense was to start her on Levaquin, a very good antibiotic for pneumonia. Then over a day or so if her chest felt tight or she developed a gentle cough, I took her to the clinic for x-rays. Simple enough, yes, but according to the doctors many battles (lives) are lost during that event. It’s imperative to catch the monster early and stop it in its tracks. Sometimes Annie would be hospitalized with pneumonia, and sometimes she wouldn’t. It happened often.

Taking care of me–the trap

This was not my strong suit. I was a selfless, self-sacrificing, and in some ways seemed to be looking for martyrdom, although I didn’t know that and it certainly was not my intention.

My happiness seemed to revolve around hers. And as she was not a happy camper most of the time, nor was I. I mean, how can I be happy when she is continually laying in her hospital bed feeling miserable? How can I eat when she can’t eat? Those are simple questions with seemingly complex answers.

As caregivers for chronically or terminally ill loved ones over a lengthy period of time, we must take a break when and if we can. We are not really “superheroes with super powers.” We can’t defeat anything if we get sick from burnout or caregiver stress, also known as caregiver syndrome. Even soldiers on a battle field get food, water, and often times nap or sleep when the enemy sleeps. Over time, I learned to get my rest while Annie slept.

At about the two year point in my caregiver role for Annie, a nurse came to me and told me I need to take a break from caregiving, and get away for awhile.

I just laughed at her while thinking out loud…That had to be some sort of a joke.

I’m serious Bob, you’re going to get sick and will not be any good to Annie. Plus, you’re most likely doing irreparable damage to your body. You never seem to stop or slow down—and you must.

I scoffed at that statement at the time, as I was still strong and energetic. I didn’t have a clue what I was doing to my body. By this time, I knew I was going to lose Annie at some point in the near future, and when I lost her, I was going to lose me too. So why should I even care what was happening internally to my body.

What a cavalier attitude I had towards myself and the whole caregiver issue. My goal, my mission, was to bring everything I had to the table when caring for Annie. No whining, complaining, or short cuts. I was all in, and as told to Annie by me, “as long as I’m standing, I’ll do everything I can for you.” Noble statement and factually true, but has now brought consequences to bear that have now challenged or left me questioning why I didn’t take better care of myself.

Problem was, my brain forgot to send a memo to my body that internal events were being set in motion that would sooner or later rear their ugly heads and bite me. And they have. I have prostate issues, A-fib, low red blood cell counts, been on antibiotics and steroids for lung infections–three time in the last year, and just recently got over a bout of shingles. It’s embarrassing when a specialist MD can look you in the eye and say, I tried to warn you, but you wouldn’t listen.

Okay, so I’m an idiot. Would I change things and events of the past concerning my caregiver duties? Nope! Not a chance. That was a display of my love and level of commitment to my wife. And yes, she got some time she didn’t have, through extraordinary caregiving…That fact was pointed out to Annie by her friend and Cardiologist Dr. Farhat, two weeks before she died. He looked her straight in the eyes and said, “Annie, do you even know why you are still here?” She gazed back at him, her eyes locked to his, and he simply pointed at me saying, “and I’m convinced of that.” I didn’t know that, and it really had no role to play at the time as Annie was near death. I guess it was a case of what you received (more time) versus what you have now (no time). Those facts became irrelevant.

So when I say you are not a superhero with super powers, that might be a stretch. You might be like me, living in a naive world where your body knows no boundaries, but if you are, be prepared for the consequences later on, if in fact you are not already experiencing them.

My biggest problem was, I didn’t trust anyone with Annie. And I didn’t believe anyone would come close to rendering the level of care I gave her. And that may not be true, but that’s how I felt at the time.

You see, the nurse I talked about earlier had schemed with my daughter behind my back and set up a network of volunteers to care for Annie while I got out of Dodge for a few days. I can smile now, but back then I flipped out. I didn’t even give their request an ounce of consideration or a bit of wiggle room with my answer. I was precisely on point…Absolutely not! There was no way I could drive away into the sunset for a period of time, leaving the love of my life behind battling the monster, and not worry about her every second I was away. In essence I would be more stressed away from her than I was with her. That’s not a break!

And another thing–with many terminally or chronically ill patients, depending on the illness, the loved one will focus on the person they believe or perceive will give them the best care, in meeting their needs. If Annie was in trouble, she always called my name. “Bobby, please help me.” When I went to get her medications, as I was the only one that could, I’d leave my daughter with her. She always worried until I got back, and as soon as I arrived home she’d relax again. You cannot put a price on that, or turn those words over by substituting another name. It doesn’t work that way. It’s about commitment and love. I honored my wife, and if it means having problems 4 years on, well, so be it. At least I can look in the mirror knowing I never let her down in her darkest hours. And let’s be fair…I’m alive, doing fine, and she is–just gone.

Yes, I was an extreme caregiver. And I’m sure there were things I could have done to lighten my load. For example, most people don’t stay at the hospital 24/7 with their loved one as I did. We spent over one-hundred days in the hospital together.

One evening Annie’s male nurse said to me, why don’t you go home and get some decent rest.

I told him I couldn’t leave her alone. I think that offended him and he responded, you don’t need to be here all of the time! His sharp tongue at that moment, was exactly why I needed to be there for Annie. I was her advocate, and believe me, on the cancer ward, by ratio, there is way more patients than nurses. One night a couple of nurses called in sick, and on one half of the cancer ward one nurse had fifteen cancer patients. The neglect is ever present, but the blame usually fell at the feet of the management and not the nurses. That poor nurse was worked off her feet for a few hours until help arrived, and everyone was late getting their medication, except Annie. I would wait by the locked door to the medication room just prior to Annie’s due time, and when the nurse came in to get medication for someone else, I’d get Annie’s medication at that time. That is a responsibility of a caregiver/advocate when in crisis mode. We step up to help the nurses. They never had to worry about Annie.

Sooooo, if you are not me and don’t want to end up like me, then don’t follow in my footsteps. Take a break if you can. We may be superheroes of the mind, but we don’t have super powers. This mortal thing is real!


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

Veterans: Caregivers for a Nation

Veterans: Caregivers for a Nation

Have you ever wondered what this world, namely our nation would look like if not for our veterans? The truth is, no one knows for sure. It’s possible we could be speaking German or even Russian. And if we go further back in time it could be some other language. The point is, the true caregivers of this nation could arguably be our veterans. I remember back in 1968 through 1972 while I was on the front lines of the cold war, I was told that I was and considered expendable. My life expectancy if war broke out was twelve minutes. But that was my problem, because I and thousands more like me were on the front lines making sure our nation of citizens could feel safe and rest peacefully at night. Most unaware that we were holding back a force capable of destroying our nation many times over with the push of a few buttons. Why were the buttons never pushed? Because we had bigger and better buttons, with the sole purpose of assuring our adversary that we and our nation would not go silently in the night without a fight. We were forever vigilant, and when they made an aggressive move, we countered by making a move to counter their move. None of this was done to start a war, as caregivers for the nation, our job was to stand tall and deter a war. And we did that!

Imagine, you’re 20 years old, stationed in England, you’re working an eighteen hour shift, the wind is blowing the snow is falling, and you have no where to seek shelter. Your cold, lonely, but your mission is to stay vigilant and walk around the fully loaded aircraft entrusted to you, with orders to shoot anyone or anything that approaches it without your permission. You seemingly have the weight of the world on your back, but you do your job with pride and honor knowing that you are making a difference in the lives of a nation.

There is absolutely no doubt, that the fruitful nature of our country would not exist if not for the Veteran Caregiver’s.

So when you go to bed tonight and your saying a prayer or just thinking, remember the veterans and our current military members serving in this country and around the world. And when you wake up from a peaceful night’s sleep, getting ready to start your day, perhaps kissing the ones you love goodbye for the day, understand why this is possible…The caregiver’s of this nation have got your back.

“Lest we forget” the thousands upon thousands of veteran caregivers that gave their lives for their country, through battle, from the effects of a wound, or later in life from toxic substances such as Agent Orange they received while
serving their country.

In essence, without veteran caregivers, many who paid the ultimate price, to active duty–the short term and lifers like me, this beautiful Nation we call the United States Of America would not exist as we know it, and might not exist at all. “We were and are the caregivers of our nation.”

The lead in picture is of Nick Desjardin. He was a soldier, career Army, and at one point spent a tour of duty in Vietnam where he was exposed to Agent Orange. Nick recently passed from Pancreatic cancer which his oncologist linked to Agent Orange. He also fought a three year battle with Prostate cancer, Agent Orange Related, which he survived. RIP Nick!


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

Happy anniversary, my sweet Annie

Happy anniversary, my sweet Annie

Hi sweetie! It’s been five years today since you went away. A thousand questions, and a million tears later I, still don’t understand. You seemingly did everything right. Good diet, always exercising, and working towards good health. What the hell happened? Will I ever know or understand. A year and a half going to doctors and specialists, all agreeing that something was wrong, then kicking the can down the road for some other person to get paid. Everyone was making money, and you were dying in front of our eyes. I don’t understand! The dreaded “C” word that no one wanted to talk about–they said, you simply looked too good to have cancer. I don’t understand! Death is so final.

And then the big day came

Finally, we were scheduled to go to the cancer center, and did so with a very silent reserve.  I’ll never forget the look on Dr. Moore Sr’s face as he gave you your diagnosis and prognosis after the bone marrow biopsy results came in. With a wrinkled forehead, and I believe the look of sadness in his eyes he simply said, “Ann, you have multiple myeloma, cancer of the bone marrow. It’s terminal, metastatic, treatable, but not curable.” Your fate had been sealed. In his notes that day he wrote, “I hope to get started by next week on treatment of this unfortunate patient.” What you didn’t know and I never told you was that I had a phone call from the cancer center earlier in the day and they told me you might have 3 or 4 weeks to live, but what they couldn’t understand was, why you were still alive. How could that happen? I don’t understand! Death is so final.

But what the doctors, oncologist’s, medical professionals, and family didn’t know was that you had a tenacious ability to fight through your pain, suffering, torment, adversity, and always with a smile. Annie, you inspired and were loved by so many. Even the cold heart melted in your presence. You were so much about love and as you said, the well being of other cancer patients less fortunate than you. I remember when you made that statement about the other cancer patients. It blew my mind. How could anyone be less fortunate than you? Broken femurs, broken ribs, collapsed spine, blood poisoning, swine flu, countless pneumonia’s, shingles, over one-hundred days in the hospital, many in ICU and on the ventilator. You were so sick, but so giving. You were truly an amazing humanitarian, so selfless, and thoughtful of others. I get your point!

Annie, a few weeks ago when I was at the Annual Leukemia & Lymphoma Society’s light the night walk, a young nurse from the stem-cell transplant ward that you liked so much that I hadn’t seen in several years, came running over, put her arms around me, gave me a big hug, and with tears in her eyes motioning me to a big sign listing all the names they were walking for. Annie, it was not alphabetically listed, but you were their first name. I know, that would not impress you as you didn’t feel any more special than anyone else, but, obviously they thought you were very special. And so did I. Sweetie, you didn’t realize at the time, nor did I, that you were touching and inspiring the lives of so many other patients, giving them hope for, in some cases, just one more day.
Sweetie, your star is shining brighter than ever. I haven’t forgotten you, and as a friend from Nebraska recently said–“Annie is never going to die as long as you’re alive, is she.”

My reply to him was spontaneous. Nope. She is not! Her star will shine until my memory fades, and by that time her legacy will be fully entrenched on the world’s biggest stage (the world wide web) and in the hearts and minds of others. Annie, as long as there is life on this planet your legacy will be out there, appearing out of nowhere to some unsuspecting stranger seeking help during a crisis. What they find will be like a breath of fresh air, a candle flickering in the night, lighting up their darkness, and guiding them to a brighter day.

I’ve been writing or journaling your story since the early days after your death. At first, I wrote for my survival, I simply didn’t know how to go on without you. Through journaling, I was able to stay in touch with myself, my feelings, and acknowledge the devastating grief. Well, I never stopped writing. There has to be in excess of several million words about you, “My Sweet Annie” on the web. At first, the writing was hiding in all the dark corners, as was I, but now, it’s out into the light for the world to see and share. Annie, folks are starting to take notice around the world, and I know that from the contacts I have made through your story. It’s never ending, and will forever be about a timeless love between a caregiver husband and his wife, always fighting against the odds, never knowing the meaning of giving up in the face of extreme adversity.

Annie, know this! I will never stop writing or sharing your story. It seems in almost every paragraph I write there is another little jewel of a story just waiting to be told–the story within the story.

So I will continue on with my journey of helping others through your story, and I know, between the two of us we are making a difference. To me, that is my destiny and will one day be my reward. As was with you, I will go silently into the night, filled with love and peace in my heart, knowing, together we made a difference.

I love you more, and miss you, “Rest In Peace My love.”

Bobby xoxo

You can visit Annie’s online memorial here.

Halloween night

Halloween night

The calm before the storm

October 31, 2010: Annie woke up this morning not feeling very well. All the anxiety around getting blood and platelet products the past week was taking its toll on her. But, as always, she found a way to bring out her beautiful smile and made the best of each day. Annie was never one to dwell on the negatives. She was always trying to stay on the positive side of life. I think in this case, Annie was starting to accept the reality that she’d soon be leaving this mortal coil we call earth.

The newly found child inside of her, Little Annie, was really excited for the trick-or-treat event. I can honestly say, throughout our marriage, that Halloween night was never a big deal. We gave out candy, made sure our children had a good evening and that was about it. For whatever reason, this was a big night for her, and it appeared she was going to make the most of it.

That evening Melissa took the lead in picture to this article of her sitting at the dining room table in her wheelchair. She was wearing this frightening mask, playing with the grandchildren—happy, and making them laugh. Annie had the uncanny ability of making each and every-one of them seem like they were her favorite. But the truth is, she adored them all, and was so elegant in communicating such happiness and love to us all that night.

Maybe her mannerisms on that night speaks to God’s grace. I wondered if this was what it’s all about. Does that mean it allowed Annie to be so graceful in her final days? Sure seems that way. Annie knew her death was imminent, and although very excited, there was a very strong sense of calmness around her.

I try to imagine how she must have been feeling; and deep down in her thoughts, what must have she been thinking? Getting platelets nearly every day and being told they weren’t working. Annie knew, if she could have successfully taken life sustaining platelets a couple months ago, none of this would be happening now. But for this day, she seemed to be putting all that behind her, and intent on, “Having fun with the grand kids.”

Later on in the evening, she went back to her hospital bed, and I propped her up on the bed by putting three pillows behind her back. I then went to the cupboard, pulled out three large boxes of gum balls I had stashed earlier, and gave them to her. I told her not to give them to the grand kids until they were in costume. She stuffed them under her pillows and sat on the bed, so excited and beaming over the fact that she had those boxes of gum balls for the grandchildren.

At that moment, she was so much like a child. Over the years, Annie always got down on the floor to play with the grandchildren, trying to get down to their level. That isn’t what Annie was doing tonight; and for this moment in time, she was “Little Annie,” one of them. The three grandchildren came in the room, made her laugh, and played with her. It was fun watching her excitedly dig those gum balls out from under her pillows then passing them on. It seemed to be one of those “Look what I’ve got for you moments”—full of excitement and love.

Once we were on our own, I sat in the wheelchair beside her bed. We chatted about the evening and how much fun it was. My daughters and grandchildren all participated that night in such a positive way, it made me proud. I knew the grandchildren were worried about their nanny too; but sometimes, we as adults have to be strong and make the best of a bad situation. We do it for the children.

She had her medications, and shortly thereafter fell asleep. As it’d been over the past several days, each time I checked her Ostomy bag, I always had a nervous anticipation about what I was going to see. I was living on hope too. That night when I checked her Ostomy bag, it was still filling with blood, which always gave me one of those helpless, breathless feelings. I changed the bag while she was resting peacefully, knowing that this beautiful woman I’d known, loved, been loved by and married to for thirty-nine years would soon be slipping away, from my grasp.

It’s a difficult place to be, when you’ve traveled a journey through cancer with someone you really love, who fought an epic battle, and in the end it all comes down to two lingering question. How long will it take for her to bleed to death; and would I be strong enough to let her go gracefully? At that moment, those were simply questions without answers. I knew there would be no more blood or platelet transfusions, no doctors or hospitals; and I also knew she’d be going home soon to what she felt, would be a better place.

Regardless, she went to sleep happy, and I can say from the bottom of my heart, “That was a good night!” We were all so blessed, to have her in true form, for one last time. We had the added gift of seeing “Little Annie!” She was a blast—so full of laughter, love and spirit. As I watched her lying on the bed, I knew this night, that I loved her more than life, and would have gladly traded places with her or went with her if I could. She’d suffered enough!

My emotions and imagination were trying to get the best of me; but deep down inside my soul, I knew these were just thoughts, and not possible. My sad reality was; “I would soon have to learn how live on my own without her.”

Annie passed on Nov 2nd, 2010, of complications from low platelets, due to a rare blood cancer of the bone marrow, multiple myeloma.

Over 69,000 people have visited Annie’s online memorial.

Because of Annie” is sold in all formats on Amazon. All proceeds go to cancer.

Caregiver, grief, and a million tears

Caregiver, grief, and a million tears

If a Genie popped out of Aladdin’s lamp and I had but one wish, I would not want fortune or fame, nor any of the luxuries life has to offer. My wish would be simple and from my heart. “In my lifetime, never again would I have to experience the loss of another loved one.” The burden, I fear would be too great for me to handle.

Yes, one could argue that I was being selfish, and that I could use my wish for a much better cause for humanity, but then you probably have not felt the gut wrenching pain I felt for over 4 years. There’s no silver bullet to make it disappear, it’s just there, twenty four hours a day…You go to sleep with it, which can and often did bring on nightmares, and when you wake, it’s right there waiting for you with open arms. There is simply no way of escaping it–it follows you around like a shadow on a sunny day. And yet, you’re swimming in the darkness.

A million tears

When you’re a griever, especially if you love deeply, you’re going to shed some tears. Some grievers will shed more tears than others. So the statement, “a million tears,” is probably an understatement, of what is likely millions of tears. And I say that because, it’s not just my tears I talk about, it also the tears of others touched by Annie’s story, and to words communicated to others by me, or by words communicated to me from others. It really can be a very tearful circle. But, communicating with others through our tears, is very important to a griever in terms of healing.

You’ve seen the comedian that while walking on stage folks spontaneously start laughing because he’s got a quirky look about him, which looks a bit silly and makes them laugh. Well, I was that comedian–and when I went on stage to speak to an audience of folks about my loss of Annie, the audience would take one look at me with my quivering lips, and the tissues would start coming out from everywhere. They were acknowledging my tears as an expression of my pain and I really hadn’t spoken a word. However, when I saw their tears, I knew we would be locked together for that emotional ten minutes, and I was free to safely pour out my rambling thoughts, that jumped around like a spinning top in a sea of filtered tears. My audiences were anywhere from eighty-five to five hundred and sixty folks, most were attending one of the various events sponsored by The Leukemia & Lymphoma Society’s charity benefits program. I never asked to be a speaker, but my grief driven passion for helping others, through revealing Annie’s tragic journey with blood cancer, was very powerful and seemed to bring out the best in others–and for that moment in time we were all a part of something much bigger than ourselves…humbling ourselves, with a dream of a world without “Blood Cancer.” And for that matter, “Any Cancer.”

The stories within the story

A few short months into my grief I was summoned to the clinic by my doctor, demanding that I get what I can only call, an after the care giving ends, physical. His thoughts were–I had to have some problems as Annie’s condition was such that it required my 24/7 attention, and I didn’t get much me time to relax. He noted that I hadn’t been to the doctor for any reason over the thirty month period of Annie’s battle with cancer.

My daughter Melissa, obviously had something to do with this visit as she worked there as a nurse, and I always scoffed at her notions that I needed a check-up. But, here I was at the clinic being escorted by her to the scales, where we shed a few tears reliving the memories of the many times her momma and my wife Annie made that same journey, usually in a wheelchair, while fighting cancer. While standing there, Melissa motioned for me to look at a short, frail, elderly man coming our way. He was being propped up by a nurse walking beside him and I couldn’t help but notice his tears, which were like a torrent of rain coming down, while he continually clasped and spun around some beads with his two thumbs and index fingers. Melissa had previously told me he recently lost his wife after many years of marriage. He was in his early seventies and obviously heartbroken.

I immediately got off the scales and Melissa and I went to him. He was one of her patients. As we approached he saw Melissa and immediately knew who I was, as he knew Melissa’s mom had passed away, and he could see the tears streaming down my face. It was a strange feeling for me as I was hurting too, but all I could think about was he and his loss. When I walked up in front of him, he reached out to me and we embraced, each telling the other how sorry we were for their loss. And I believe, for a short moment in time, life was not all about Annie and me. It’s those kind of moments in the lives of grievers that one never forgets. Special, heartwarming, and precious.

On another occasion a short time later, I went over to the clinic to speak to Melissa. While there she pointed out this very old and frail ninety-five year old lady sitting in a chair by the front door, while her daughter and a friend sat beside her.

Melissa told me that she was one of her very favorite patients and that I needed to meet her. (Let’s give her a name, “Lilly.”) So I said okay, and we walked over to where she was sitting. Melissa introduced Lilly to me and then spoke with her for a moment or so. As I looked at Lilly her general appearance reminded me so much of my Annie. From head to toe, she was very frail, her lovely white teeth protruded out of her mouth from loss of skin mass, and she wore the same TED Hose and type of slippers as Annie. And when she got up to walk a bit later, she walked the same as Annie too. Imagine, Annie was a vibrant, healthy 58 year old lady when diagnosed with blood cancer. Two and one-half years later, shortly before she died she looked and moved like a ninety-five year old lady. Another sad reality of what cancer can do to a person.

When I started to visit with her, it was immediately apparent that she knew all about me. I wasn’t surprised, but what did surprise was, when I was talking to her I kept hearing and getting distracted by the hospice word that seemed to keep coming out of her daughters mouth. I’d just asked Lilly if she was okay, thinking she had a problem and that’s why she was at the clinic. Lilly told me she was fine and just needed a check-up. I guess my imagination got the best of me and I asked her daughter if she was thinking of putting her momma on hospice. Fortunately she said no, and if she hadn’t, I would have told her Lilly would not qualify for hospice in her condition. I think she knew that.

At some point in our short but frank conversation, I noticed Lilly’s eyes start tearing up, and she said in a most beautiful soft voice, “What’s going to happen to me.” My face immediately rushed with emotion and I couldn’t hold back my tears, but I managed to ask her a question that all caregivers should ask others in the same situation. “Are you of faith.” She said she was, so I told her that I believed she was just going to lay down one day for some sleep, and when she woke up she would be in heaven. She replied in a soft sorrowful voice, “I wish it would hurry up.” I didn’t even know her, but when I walked away a few minutes later, I knew I loved her. She was a special lady. (See Footnote)

I had made arrangements with her daughter, to come over and visit Lilly at the weekend. However, the day before my visit, Melissa got a call from her daughter saying her momma died peaceful in her sleep last night. In turn Melissa called me, and although it rocked me a bit, it was a blessing for all. Just a few short days earlier she was so tired and ready to go, and now she was resting in peace.

It seems to me these days, that so much time is spent by the media on all the hate, and disruptions in the world, always focusing on the bad and not enough of the good. I know, “Good news don’t sell, bad news do!” However, as a griever, I saw and can see just the opposite…there’s so much love in the world.

A griever doesn’t target individuals to speak to. We’ll tell our story to anyone that will listen. And it’s our tears that seem to bring out the best in others. People that I didn’t even know would cry with me. Sometimes, my tears and the tears of another would blend together, turning to laughter as we’d see a small crowd gathering, wondering what was going on. Their expressions seemed to be, oh dear, are they okay. And you could see their sad, curious faces turn to relief as we started laughing. All that was driven by one man, that no one in the immediate area knew, but wanted to rescue. My grief was terrible, but my world was a good, kind, and loving world. Yes, I will acknowledge that it’s not always the same for all griever’s, just remember, there is usually one rotten apple in every bunch. And that’s probably one of Murphy’s Laws.  And the irony is, another one of Murphy’s Laws is, you may run into more than one rotten apple in a row. Life happens!

(Footnote: If Lilly had said she had no faith, I would have basically said the same thing to her, leaving out the words, waking up in heaven. As caregivers we must not push our beliefs or agenda onto others, whether it be faith or politics. It’s wrong on every level. If they initiate the conversation, try not to get aggravated or be forceful, just simply offer your opinion. It’s a win, win for the caregiver. And if someone does not agree with your opinion, so what, you’re obviously not agreeing with theirs either. Care giving is not about winning, it’s about caring.)

Annie’s Online memorial is approaching 70,000 visitors: http://www.forevermissed.com/annie-barber-harrison/#about

 


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

A caregivers nightmare: multiple myeloma, blood cancer

A caregivers nightmare: multiple myeloma, blood cancer

Here’s how it happens—

On a warm summer day a stranger came out of nowhere, knocked on their door, and immediately transformed their lives into a clash of two worlds. The stranger’s name was blood cancer, full of chaos, evil, and the inhumane–versus love, compassion, hope, and faith.

Imagine a world without blood cancer

I know, this is not the in vogue article to write, and most people will not pay much attention to it, as they feel it really does not concern them. But what if life happens, and things change. Reading this article could mean the difference between life or death, and perhaps keep you or a loved one from suffering Annie’s traumatic journey through blood cancer, and my long and deep grief over her loss. It’s nearing the fifth anniversary of Annie’s death, and “Lest We Forget.” My senses are once again on high alert as they always are this time of the year.

After Annie died I went on a relentless crusade to save the world, one person at a time from blood cancer. It’s a horrible disease! Almost five years later, not only am I going strong, I’m getting stronger in my effort to educate others. It needs to be stopped! I don’t know where, when, or who, but I believe through the lives Annie has touched from the grave through me, someone has been saved.

Again, I know, this is not what you want to hear, or perhaps even care about. Neither did I nor my beloved wife Annie. What you don’t know, can, and will hurt you. On the other hand, education can set you free.

In the United States, according to the Leukemia & Lymphoma Society the grim fact is, that one person every three minutes will be diagnosed with a blood cancer and one person every ten minutes will die of a blood cancer.

The bad news is, it will come at you like a stranger in the night, knock on your door, and change your life forever. You might not even see it coming or know it was there. But over time, you will! It will rock your world.

The good news is, many of the blood cancers are treatable and many curable if caught in the early stages. And that is not always easy as there is no pre-screening for blood cancer.

Know Your Body

My wife Annie, despite seeing numerous specialists and doctors for over a year was not diagnosed, nor sent to the hematology/oncology center to have her blood studied until it was way too late.

So the idea behind this post was to–maybe save a life. Annie never had a chance, but you do.

If you’re overtired, anemic, have unstable blood counts for no apparent reason, suffer from bone pain, and a few other things, read this list below. It’s lays out some of the same and some different symptoms of some of the more common blood cancers.

So what I want to say to you is this…If you have any of these guideline symptoms, and they don’t go away over a short period of time, and your doctor has no answers for you, don’t walk to the cancer center, run!

You may not have a blood cancer as, there are other blood disorders that mimic blood cancer. But, that’s where the big guns hang out–the hematologist/oncologist at the cancer center will do a study of your blood and give you the definitive answer on the status of your blood. In other words, what’s wrong with it. And that can lead to early detection and in turn becomes priceless!

Multiple Myeloma

This is the disease that took Annie’s life. Unfortunately it is not considered curable, but it’s treatable, with many years of remission in many cases. Secret is, once again, catch it early.
Signs and symptoms of multiple myeloma can vary and, early in the disease, there may be none.

When signs and symptoms do occur, they can include:

• Anemia
• Bone pain, especially in your spine or chest (breast plate)
• Nausea
• Constipation
• Loss of appetite
• Mental fogginess or confusion
• Fatigue
• Frequent infections
• Weight loss
• Weakness or numbness in your legs
• Excessive thirstiness

Annie’s symptoms were anemia, bone pain in her legs and spine, fatigue, and she generally felt unwell for a little over a year before diagnosis.

This guideline may be confusing to many of you, but if you’re suffering chronically form anything on the list, find out why. Annie and I should have been aggressively seeking a diagnosis over how she was feeling, but, nobody wants to talk about the cancer center, in fact we avoid it at all costs. In our minds, and apparently the mind of her general practitioner, and the minds of the specialists she saw, she couldn’t have cancer. What a dirty little word, “cancer.” Well let me tell you something, if you don’t want to talk about it, don’t. But be prepared, because the consequences could be devastating.

Leukemia

Since there are a wide variety of types of leukemia, symptoms can vary greatly; however, many common symptoms of leukemia include fever, chronic fatigue, frequent and severe infections, unexplained weight loss, swollen lymph nodes, enlarged liver or spleen, bleeding or bruising, petechiae (red spots on the skin), excessive night sweats and pain or tenderness in the bones, as stated by Mayo Clinic.

Since many of these symptoms indicate other, more minor illnesses, such as the flu, it is easy to overlook the possibility of leukemia. Essentially, if any of these symptoms are persistent and worry patients, then they should seek professional medical attention to test for possibilities of leukemia.

Non-Hodgkin’s lymphoma

Symptoms may include:
• Painless, swollen lymph nodes in your neck, armpits or groin
• Abdominal pain or swelling
• Chest pain, coughing or trouble breathing
• Fatigue
• Fever
• Night sweats
• Weight loss

lymphoma symptomsLymphoma Symptoms

(Different from Non-Hodgkin’s Lymphoma)

Many times, the first sign of lymphoma is a painless swelling in the neck, under an arm, or in the groin area.

• An enlarged lymph node sometimes causes other symptoms by pressing against a vein or lymphatic vessel (swelling of an arm or leg), a nerve (pain, numbness, or tingling), or the stomach (early feeling of fullness).

• Lymph nodes or tissues elsewhere in the body may also swell. The spleen, for example, may become enlarged in lymphoma.

Most people have no other symptoms. However, additional symptoms may include:
• Fevers
• Chills
• Unexplained weight loss
• Night sweats
• Lack of energy
• Itching (up to 25% of patients develop this itch, most commonly in the lower extremity but it can occur anywhere, be local, or spreading over the whole body)

These symptoms are nonspecific. This means that they could be caused by any number of conditions unrelated to cancer. For instance, they could be signs of the flu or other viral infection, but in those cases, they would not last very long. In lymphoma, the symptoms persist over time and cannot be explained by an infection or another disease.

Childhood cancer

What I didn’t mention was childhood cancer. It’s stated that one out of three childhood cancers in children and young adults will be leukemia. Children and adolescents are also susceptible to lymphoma and Non-Hodgkin’s lymphoma. If you have kids or grand kids, it might be a good idea to do some research on these diseases. Children are very resilient and respond well to treatment, so pay attention to “their little bodies.” Nine out of ten children survive leukemia, which is quite a contrast from twenty to twenty-five years ago when only one out of ten survived.

In closing

Closing this article out, I’d like to encourage you to not take your health for granted…It’s not worth it. Annie was a very fit, youthful person, great diet and exercise, which is what helped create the problem of getting her to the cancer center. Somehow in all our minds, she did not fit the profile. Yes, it was a huge and devastating mistake, but she must not have died in vain. And you know what, I never got angry at the doctors until two years or so into my grief, which was simply a part of the grief process. During her thirty month battle, every time I looked at her I was internalizing anger, I hated cancer so much, and when it was over, as her loving caregiver husband, there was no more fight or hate left in me. It was time for survival mode…Can I get through this grief! Please don’t be that person, you don’t necessarily have to be. Pay attention to your body—It will tell you things that your general practitioner might not be able too. Be proactive and go to a hematologist. Don’t ever put your fate in the hands of another, when you can do more. As the oncologist said to me when he first saw her, “Ann’s fate has already be sealed.”

If you want to visit or pay Annie a tribute, you can go to her online memorial. Almost 70,000 others have. Over 80 pictures of her with stories. A healing place to go.

Or read her e-book on Amazon.com–Because of Annie–All proceeds go to cancer.

Research on symptoms only, of the diseases was from the Mayo Clinic.


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

Caregiver: Life after death

Caregiver: Life after death

It seems to me one of the more difficult subjects to talk about these days, is what happens after death. Is there such a thing as “Life After Death?” To many, the question posed is one of life’s greatest mysteries. To others, it’s all simply a load of rubbish–a fools folly. But to the faithful, it’s God’s greatest gift to humanity—The gift of eternal love and life. “Yessss, I can hear you, your voices screaming out…Are you nuts!” Well—I could be. But I’d rather like to think of these words as sharing a very small part of a much larger story of my wife’s journey through cancer. A story of love, grace, and wisdom. A story so powerful and unlikely, it had to be told.

In June of 2008, when Annie was diagnosed with terminal cancer and given a prognosis of three weeks, one would think she was out of time and had no chance for any form of salvation. Reason being, she was fifty-seven years old, we’d been married thirty seven years and for those thirty-seven years, she was the one in my life that coined the term, “religion is a total load of rubbish.” Why do you go to church and put money in that stupid plate? You’re only helping the rich get richer. Alas, I only attended church a few times.
That, my friends, was my sweet Annie. She was kind, generous with charities, and truly an ambassador to humanity. And I adored her. She loved people, and cared deeply and often painfully for others from deep within her heart. One would think she was a natural born Christian, as her ways, were the ways of the Bible’s teachings, how Christians should be. But as you just read, that was far from the case.

Annie was not only a terminally ill cancer patient, but an atheist too. Did you ever wonder what was behind the mystery of why it’s not all that uncommon to hear of a terminally ill patient having a spiritual awakening. And that’s true, especially in the world of cancer where patients often have the time to ponder their fate.

I have a theory. It may not be such a mystery after all. I think it’s quite possible that the spiritual awakening was due to the potential of a very lonely death with no possibility of rescue after death, followed by the fact that the person may have already been intrigued by spiritualism—what happens to the spirit after death.

Months after Annie died, when I was going through boxes of stuff, I found little notes on paper that made me wonder what she must have been thinking. For example, I found a note on an envelope that said, “thank God we had insurance for the damage.” I don’t know what she was thinking, or even what her inference was, but I know this, those were words that one would not have heard coming from her lips prior to her journey with cancer. However, that short statement, when put into context with her spiritual awakening and her eventual acceptance of Christ as her savior, is very powerful food for thought, and in my opinion are somehow connected.

During Annie’s journey with cancer, she received what many nurses and medical personnel called, “Miracles.” Hence, many of the nurses at the cancer center and hospital called Annie their little miracle girl. I can still remember the day I was wheeling Annie through the cancer center when a nurse squatting down by a lady said, “There she goes, our little miracle girl.” And that was only the third month of her journey. Annie was truly a walking miracle to many doctors and nurses in the medical community, and Some said, “her survival defied all logic.”

As time went on, throughout her thirty month journey, their views were reinforced “time and again.” And as for me, my life has now been defined by her journey. What I saw, what I experienced, was simply amazing. To this day, almost 5 years post death, I still have the wonderment of the special life we shared for that short thirty month moment in time, where our bodies were always in motion and time seemed to stand still. I can still hear the whispers and see the smiles on the faces of so many cancer patients inspired by the hope and love she brought into their lives.

I don’t know why Annie got cancer and nor does anyone else, but, perhaps it was simply her destiny to reach out and touch others while alive, and through me, from the afterlife. I’ve been writing, and sharing Annie’s stories in guest speaker roles for almost five years now, with no intention of letting up until my memory fades. She was one of a kind, but I have to believe where there was one, there has to be more.

Anyone diagnosed with a terminal illness, will likely go through many changes, which may allow their mind to explore areas of opportunities, that were always there but never acknowledged. If you’re ever in that situation, don’t be afraid to open your heart and see what’s out there waiting for you. In Annie’s case, “What did she have to lose?” What’s the worst that could happen if she was wrong? She’d simply be lying in the ground along with the other non-believers.

Annie made the right choice for her, and who knows, she may be laughing as I speak to you, or maybe not. I know this, we can’t criticize her spiritual awakening as she died with so much love in her heart for the new journey she was embarking on. For me, the person that suffered her loss the most, it doesn’t get any better than that.

Ten months ago, Nov 2014, I made a trip to Northern California to be near my eighty-seven year old dad, who was in the hospital fighting pneumonia. At one point he said to me, “Bobby, I think I’m about ready to go home, and be with momma (my mom).” He made that statement without even flinching—so matter of factly. He wasn’t fearful, it was simply his way of turning his life over to his Creator. But he lived on until 7 days ago. He passed peacefully on August 27, 2015. My point is, true believers do not fear death and do not question the afterlife. It’s their rite of passage. Is that really such a bad thing?

Never forget, “Life is about love and being loved.” And, “If you love someone today, try to love them more tomorrow.” “Life Happens.” “Because of Annie”

Annie online memorial has had over 68,000 visitors.


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

After the death:  Dealing with loved ones personal effects

After the death: Dealing with loved ones personal effects

When I was a youngster, I was walking by our local church one day and for whatever reason decided to have a rummage in the trash can. To my amazement I found an old Bible. I gathered it up, and ran to the pastors house. I knocked on the door and was greeted by the pastors wife.

With an excited voice I proclaimed, Look, look, I found a Bible in the garbage.

In a stern voice she proclaimed, little Bobby, do you have any idea how many times I’ve thrown that Bible away, and every time I do, someone brings it back to me! Apparently, some things are difficult to dispose of.

Loved ones personal effects

This is a tough subject and I don’t think there are any good answers. Reason being, in my case anyway, talking to Annie about her personal effects, would to her be an acknowledgment of her upcoming demise. And who wants to talk about that. It’s rather like, “we’ll play this one by ear.”

Annie’s “last will and testament” was not long and drawn out. Just the basics. If she passed before me, all her worldly possessions would pass over to me. And if she survived me, after her death everything would pass down to our girls. In a basic will there is no mention of material items, like, household goods, clothing, or even life insurance as it goes to the beneficiary as designated to the insurance company.

annie's memorial stone

Here’s the real problem

It’s one thing to talk about a loved one’s personal effects, but disposing of them, can and often does create traumatic and difficult challenges for the survivor(s).

Annie died in the middle of our living room in her brightly colored hospital bed. It was always brightly adorned with very colorful sheets and pillow cases, which in some strange way helped it resemble our colorful queen size bed upstairs.

Friends would come over, and sometimes with questioning eyes ask me when I was going to move the hospital bed into the garage. That was a freebie question, and with composure I’d simply say, that bed will never see the inside of the garage. Like I said, that was a freebie question, and they knew by the tone of my voice, they were never to ask that question again. Grievers can sometimes get upset over the simplest of well meaning gestures.

When Annie was diagnosed with cancer, four weeks later the hospital bed became her bed for the next twenty-nine months. She had many diseased and broken bones from the cancer, even at this early stage of diagnosis. And my bed became the couch, five feet away from her. I was her 24/7 caregiver, and learned the true meaning of sleeping with one eye open. The open eye is a metaphor for having the ability to hear her if she had a problem in the night, and react quickly. Even while sleeping, if she moved I seemed to know it. My senses were always on high alert.

As time went by and my grief deepened, I always slept on the couch and the hospital bed became my friend. As I did when she was alive, I’d lay down on the couch at night, stare at her bed, and heal. It’s hard to accept the fact that your loving wife of thirty-nine years is gone, but over the months of looking at the bed each night, I learned acceptance when I was awake. When I was sleeping, if I heard a noise or thought I heard a noise, I’d wake and immediately stare at the bed making sure she was okay. But she wasn’t there. However, acceptance helped me with the understanding I needed to cope with my loss. It was a very challenging time.

There was so much interaction between Annie in her hospital bed and me on the couch. Many mornings I’d wake up, lay on the couch staring at her, seemingly falling deeper in love with her. When she woke, as her eyes started coming into focus she’d be searching for me. When her eyes met mine she give me a beautiful smile and say, “hi babes,” and I always returned her smile with the words, “hi sweetie.” It was always a magical moment between two people…The caregiver and his beautiful wife Annie.

One memory that is rather ironic is, due to all the heavy narcotics Annie was on she snored loud and often. The other downside to all the narcotics was that her breathing could get so low she could actually die. One day a nurse came over to check on her while she was asleep and snoring. The nurse knew I slept on the couch, and I guess her curiosity got the best of her. She asked me how I could sleep with such loud snoring. Her forehead started wrinkling up as I told her that it was sweet music to my ears. I explained to her, that as long as she was snoring I knew she wasn’t experiencing labored breathing and I could relax in a way I could not when her breathing was shallow. The nurse didn’t comment, she didn’t have too. I knew what she was thinking, and if I didn’t have that certain love for Annie, I probably could not sleep in the room either. It was loud, but the message being sent to me was clear, for that moment in time she was okay.

Letting go

It was about nine months after Annie passed that I got a call from my daughter Melissa, who was Annie’s doctors nurse at Family Medicine East. She started talking about the hospital bed and it was obvious she was talking around her primary trend of thought. And that’s because she knew how I felt about her “momma’s” hospital bed and letting it go. She started telling me a story about this sixteen year old boy that had been is a serious motorcycle accident and had suffered many broken bones. She said she knew him, he was one of their patients, and his parents were relatively poor. Then she nervously said, they desperately needed a hospital bed for when he got out of the hospital, but the insurance company had disapproved their request.

This man, that felt like he’d already cried a million tears, started crying. I could not wrap my head around what was happening. There was absolutely no hesitation in my thought process, I knew immediately that the bed needed to go to the injured boy, and that would be exactly how Annie would have wanted it.

That was such a win, win for me. Annie loved children, and her bed, which she filled with love, would now be able to love on the boy. I know the boy was blessed getting her bed, and when his dad picked it up, I let him know just how special that bed was. Being a loving father, he was thrilled.

Annie had a walk-in closet in our bedroom. It was filled with neat clothes, shoes, and boots of all sorts. She traveled to her motherland England at least once a year to visit her sisters, and usually flew out to Los Angeles once or twice a year to see her sister Lesley. And being a woman, she loved to shop. A lot of the clothing and accessories she took on her trips she’d leave behind, and bring new stuff back.

When she died, I was having trouble letting go of her clothing and accessories, or her personal things. At about the two year point, I decided it was time to let the clothing and accessories go. How did I know it was time? Most days I’d get into her closet and smell her clothing, and sometimes I could get a little whiff of her scent. Once I could no longer sense her smell, I knew it was time.

What to do with them

After giving the matter a lot of thought, I got in touch with the pastor’s wife of the Aviator Church I started attending about eight months earlier. I told her in order for me to let the clothing go, I would want them to go to a poor community. She was able to locate a church in a poor neighborhood that not only wanted them, but had a real need for them. One morning Michelle, the pastor’s wife, showed up with two or three people and took loads of clothing down to a vehicle—and off to spread the joy they went.

I spent years combing this town for antiques and doing estate sales so I knew the area well. I’d find myself trying to imagine how those ladies or young adults must have felt putting on clothing that was well above anything they probably could ever afford. For me it was a very pleasant feeling, and on occasion I thought about driving to the area to see if I could spot anyone wearing a piece of her clothing. But that was only for a fleeting moment as I was unsure how that would make me feel. I was still going through heavy grief.


Her precious nightdresses are all still hanging where they were when she died. We have a pine rod that hangs behind the washer and dryer, and for convenience sake, that’s where I kept them. Some days she may need changing two or three times. It’s hard for me, even though it been almost five years. I can’t give them away, or throw them away, and putting them in boxes in the basement seems too cold. So for now, they’ll stay where they are. I can’t let go of them.


We have a comfortable wing back chair. One day Annie wanted to sit in the chair, lay her head back on one of the winged arms for a nap. It’s actually comfortable. After awhile I tried to wake her up for some medications and food, but she wouldn’t wake up. After about eight hours I called my daughter Melissa, asking her to come over and try and help me wake her. We couldn’t do it, so I called the on duty oncologist for guidance. Dr. Schultz returned my call about twenty minutes later and had a sure fire way of waking her. He said it usually works well. We were to lean over near her face and rather loudly tell he that if she didn’t wake up we were calling the EMS and she was going to the hospital. He stayed on the phone while we took turns doing what he requested. She didn’t flinch or move and we were starting to think the worse. Dr. Shultz said, call EMS now and get her transported to the hospital immediately.

The EMS and fire department personnel arrived at the same time. They took turns trying to wake her but nothing was working. Her vitals were okay. The decision was made to bring in the gurney, put her on it and transport her. Because Annie had badly diseased and damaged bones, there were four large firemen gently picking her up and laying her on the gurney. When her back hit the gurney, her eyes just popped open, and she found herself staring up at these four large firemen. Immediately a huge smile came on her face and she said, “what a bunch of lovely looking bloke’s.” (men) I think she thought she’d died and went to heaven. Those firemen and the paramedics really had a good laugh that day. It was scary at first, but turned out to be a great story. So I can’t let that chair go either. Well, for now anyway.


Her beloved wheelchair that took her everywhere, and where some beautiful memories were made was difficult to let go of too.

One afternoon I was pushing her out of the cancer center and to the elevator. We waited for a bit and when the doors finally opened there was a tall well dressed man on each side of door immediately after we entered. Once inside, I always turned the wheel chair around as I would never leave Annie facing a wall. As I was making that maneuver, I vocally said, “Don’t worry Annie, I’ve got your purse!” Annie and those two guys just started roaring with laughter. And were still laughing when we hit the ground floor. One of the gentlemen stepped out first, and kind of like an honor guard just stood there and acknowledged us by saying, “Thank you, I really needed that.” What their business was, I don’t know, but they did come down from a floor that dealt with hospice and home health.

We had a wheelchair ramp built inside of our garage. Sometimes when I’d be pushing her up and nearing the top, I’d start letting it slowly roll backwards with the words, “Annie, I’m slipping!” She’d get frantic, start freaking out, and then I’d push her on, into the house. Then she’d scold me with laughter. She always said, “I love your sick sense of humor.” In many ways, we laughed our way through cancer.

The wheelchair, like the hospital bed eventually went to a disabled lady. Her porta potty, nebulizer, kangaroo pump for tube feeding, along with a sundry of other items all went to charity.

Narcotics

Disposing of Annie’s narcotics at the time was no easy task. And let me tell you, even though we needed to get rid of them as quickly and safely as possible, they were her pills and strangely enough, hard to let go of. Like anything else, it was another little part of her life that I was letting go of.

Annie spent a lot of time in the hospital so we had a excess of the drugs—six bottles of percocet, six bottles of immediate release morphine, five bottles of extended release morphine, five boxes of fentanyl patches, and lots of xanax. I went over to the clinic to see if they would dispose of them for me, and they said they couldn’t. I asked for some guidance and they didn’t have any, other than flushing them down the toilet. I refused to do that for fear of water contamination. In November 2010 it was not clear what effect narcotics had on our drinking water, but of course, now scientists are starting to find trace amounts of drugs in our drinking water in places. In the end we dumped all the pills in my large plastic trash can, covered them with water, then garbage. The fentanyl patches were chopped in little pieces and dropped in there too. What a cocktail that must have been! But, I had no other choice at the time. I was responsible for all the narcotics, and making sure they didn’t get out into the mainstream of people.

Narcotic Disposal: Food and Drug Administration

Contact your city’s or county government’s household trash and recycling service to learn about medication disposal options and guidelines for your area. Transfer unused medicines to collectors registered with the Drug Enforcement Administration (DEA).

Sentimental items, or things that spark fond memories can be difficult to let go of. I think time, is the biggest reason for even having this conversation. Over time things change, people change. After the reality of death is well entrenched in our mind, then starts to fade, we realize that stuff is not all that important. It is just stuff and will forever be stuff. Of course there will always be some little treasures that we can never let go of. Their called “Keepers,” or “Keepsakes.” Either way, their off limits and often times become family “Heirlooms.” In essence, through heirlooms we are keeping the family tree going and perhaps are adding a bit of spice or love.

Leaving you with a smile–Letting Go

Annie and I were Antique dealers, and did estate/tag sales for twenty years. In a town the size of Wichita, there was an abundance of dealers, and good stuff. So we all swapped stories.

This takes letting go to a higher level. My friend, the lucky guy, got a call to go to a home and buy some of an older ladies recently deceased ex-husbands stuff. When he got over there he was bombarded with the story of how she hated his deceased new wife, and didn’t like him much either. He purchased a few things that were good, but initially not worth the effort having to listen to her rage. He paid her, and as he was leaving his large right foot (he was a big guy) disturbed a box under the sofa allowing it to show itself a bit. All he could see in the box was a bunch of envelopes. Seeing that they were old, he asked her what she wanted for them. After looking at a couple of them she said, just get the expletive things out of here. They belonged to his deceased ex-wife’s kin folk, and apparently she didn’t like them much either…So she let them go.

Many of the letters were written by a soldier fighting in the Civil War, and each was matched with the return letter from his wife. All in chronological order. They sold at auction for around $18,000. The next set of letters were from the American Indian war during the 1880’s. Also chronological from a soldier to his wife and back, and they sold at auction for about $12,000. There were a bunch of miscellaneous letters that made a couple thousand as well. Anyway, the total was just over thirty grand…Angry lady, letting go.

Annie’s Online Memorial


Hear the whole story in Bob’s book, Because of Annie. All proceeds are donated to cancer charities.

Is dying at home a rite of passage?

Is dying at home a rite of passage?

When Annie looked up at me from her hospital bed and said, “Please take me home–I don’t want to die in the hospital.” With those words, Annie reserved, and deserved the right to die at home.

Annie had five core wishes when diagnosed with terminal cancer. One of which was dying at home, where she felt comfortable and safe. There was no way on God’s green earth that I would deny her that request. What’s the point of a terminally ill person having a wish list when dying, if the wishes are not followed by her loved one(s). There is no point!

As I sit here today almost five years post Annie’s death, I can still see her beautiful creation. She was a masterful decorator, and loved hanging wallpaper, mixing and matching beautiful colors.

Not much has changed in here since her death. If she wants to pop in and set in an old familiar chair, it’s still here and where it was. Turn a lamp on, no problem, it hasn’t moved either. Nope, I’m not saving the house for the day she mysteriously returns, but what I am doing is “loving her.” When I look around, I see and I feel the love. The thought that I had the privilege to be her caregiver until the end, and that she passed in our home, gives me a warm heart. You see, love doesn’t hurt, but the pain from loving can be very traumatic at the end. But I believe, and am convinced, that deep pain is best dealt within, “a house built on a foundation of love.” Our home was the most appropriate place for her rite of passage to occur.

What’s The Problem

From reading some recent articles on dying at home, it seems to me the authors speak more of themselves, and how hard it was on them, while lacking the total commitment to care for their loved one in a meaningful way. Annie’s care could be very difficult at times too, but I didn’t care. My commitment and dedication in making sure her last days or hours on this earth were as comfortable as possible, with her wishes being lovingly fulfilled, seemed to become my soul purpose for existing.

Simply put, life is about love and being loved, and if that is not one of your personal core values, care giving for a loved one dying at home is probably not for you. If you can’t provide exceptional quality care for your loved one, then by all means turn them over to hospice or leave them in a nursing home. What’s the difference? A dying patient will feel your love, or lack thereof. And I think that is a real tragedy. Everybody wants to be loved and they need to be loved until the very end. Dying can be a cold journey for a loved one, and when handled by a lukewarm caregiver loved one it’s probably even worse.

Recently I read a blog about why dying at home is not all that it’s cracked up to be. It’s a very good blog, but in my opinion does not address the true nature of love. What I saw in the blog was some useful information, but also chaos and guilt. And it was a tremendously successful blog. Why! Because it’s based on many truths, and speaks to how it is for many caregivers.

Anytime a loved one starts feeling like a burden to a caregiver, I can guarantee you things aren’t going to go all that well. The moment the resentment starts settling in, things go South from there. Chaos starts to set in, and form that point on their becomes a loss of control by the caregiver and the patient senses the chaos and reacts accordingly.

It Doesn’t Have To Be That Way

I like to think of care giving during end of life care as, separating the pretenders from the contenders, and then there is the champions which are those that love deeply.

If you’re a pretender and talk the talk, but can’t walk the walk, let the professionals handle your loved one. They’ll do a better job, and the loved one will be better off, as you’re probably going to muck things up anyway.

If you’re a contender, you will most likely have a sense of self-confidence and be up for the challenge. You will get tired, frustrated, aggravated, and question your own sanity at times, but you will do your best to help your loved one through to the end, and be somewhat successful. And my definition of successful is—was the loved one comfortable at the end and did they feel the love. If the answer is yes, you did a great job making the best out of a very difficult situation.

For those that have a deep love for the person their caring for, “you’re an Angel.” You may not do everything right, you will make some mistakes, but you will recover and whatever it is that you’re doing for your loved one, it will be done with selflessness, empathy, compassion, integrity, love, utmost of respect, and from the heart…And that’s as good as it gets. The loved one will pass over with love in their heart.

You’re the caregiver that pays attention to the little things. A dying loved one can be like a small baby, very fragile, and needs to be handled like one. Are the sheets under the baby wadded up causing the baby unseen discomfort. Is it hungry, does it need it’s diaper changed. Are the lips moist enough not to chap. We go to great limits taking care of a new born baby, why not apply the same principal to a dying loved one. Dignity in death is not a new concept, and we must not let it become a dying art form.

At times, over the first several months of Annie’s journey with cancer and again over the last eight months of Annie’s life, I had thirty five hour back to back shifts with only a couple of hours sleep in between. Did I cry, did I complain, did I moan, no! You know why? Because it was not about me, it was about Annie. Near the end of her life she’d say to me, “Bobby, you need to get some rest darling, you’re getting so tired.” I would simply smile and say, “Annie, I’ve got the rest of my life to sleep.” And that’s how love works. You’re locked into relentless care giving for your loved one which overrides the things that you consider not so important at the time, allowing you to keep on loving them through their darkest hours. In the end, death is so final. I’m so glad I stayed awake long hours caring for Annie, allowing myself more aware time with her. It’s precious time that once gone, you can never get back.

The Final Battle/Dying At Home

Twelve days before Annie passed, the situation in our home was so grim. Annie was really sick and suffering from internal bleeding. On that 12th day, Annie was sitting at the dining room table with me and her sister Lesley, when she started having a spontaneous bleed. The blood came from one of her ears, one nostril, and her gums, lips, inside cheeks, and throat. It wasn’t a heavy bleed, but it didn’t have to be. It was the shot across the bow, a warning, the countdown had begun.

Was I afraid, no! Was I sad, yes, I knew what it meant. I was heartbroken. Was there a lot of chaos, no! I took immediate action to control and calm the situation. I had 29 months to prepare for this event, which I knew was coming, just not when. From the early stages of her disease it became clear that Annie’s body would reject potential life sustaining infused platelets, which is one’s blood clotting mechanism. Her lack of platelets was causing this bleed.

Six days before Annie passed we went to visit her oncologist, Dr. Moore Sr. When he walked into the room he said, “Hi Momma!” Want the good or the bad news first.

(Note: Annie and Dr. Moore Sr. had a wonderful relationship. When he met Annie, he’d been an oncologist for 39 years, was a scientist, a senior member of the board of directors for the Leukemia and Lymphoma Society and knew blood cancer better than most. He absolutely fell for her kind and loving ways. It was kind of sad, he wanted so badly to save her, but knew he couldn’t. He told me privately in the third month of her cancer, she was one of the most difficult cases he’d ever had. Why, because as he said the day of her initial diagnosis, she should not even be here. She should already be dead. But here she was, presenting one challenging event after another. Annie was a sick lady!)

Annie wanted the bad news first.

He told her rather nonchalantly, with a strangely curious look on his face, that her platelets were “0.” She didn’t have any. (Normal platelet count is 140,000 to 450,000). Other than dying, it couldn’t get any worse than that for her.

At that point, I thought I had sat in on one of the most amazing conversations, or lack thereof, I’d ever heard. He just casually told her she had no platelets, and she took it in her usual gentle stride. For that moment in time it seemed like their minds were locked together like, so what! What else is new! I would have thought there would have a been a much stronger reaction from both of them. But that was not the case. It was going to be business as usual.

After a bit, he had a detailed talk to her about hospice, and then asked her what she wanted to do. She said, “I want to fight on.”

Before we left his office, he asked her if she wanted the good news.

She said, “Yes!”

He said, “you’re still alive!” With a huge smile.

With that Annie started belly laughing. In the end we were all laughing. Just think about it. The situation was very grim, but what else could she or we do. Pity party, cry—no! She chose to see the funny side of a really bad situation. Imagine, two and one-half years earlier we had two very successful small businesses, a nice home, with the metaphorical white picket fence, two nice vehicles, getting ready to retire, and in general life was treating us kind. When looking at the irony of the situation as it now was, it was laughable. Our life, our hope’s, and our dreams were now just an illusion.

So what did we do? What we’d done many times before when the situation was grim. Got on with our day! I can honestly tell you from the heart that we did not dwell on, or talk about the seriousness of her situation. There was really nothing to talk about, it was a non entity. No one could help her! She was now beyond anything modern medical technology could deal with. As her loving husband and caregiver, you can bet your whatever, that in my mind I was focusing on the possibility that at any time Annie could have a true unstoppable spontaneous bleed out, and there would be nothing I could do but hold her and love her through it. Imagine having “0” platelets and living in a body that was badly beat down, diseased, and broken from cancer. Bleeding was a nightmare waiting to happen.

Hospice was never really a consideration for me, nor was dying anywhere but home. The hospital put up some resistance to me on two different occasions, at the 10th month prior to her death and on that 12th day that I just spoke of. They wanted her on hospice in the hospital immediately. But I always fought back, using my knowledge and understanding of the situation as it was at the time, along with my love for Annie and her wishes. Those were potent weapons when dealing with such adversity.

The last thirty-three hours

It was at that point that Annie started spitting up bloody mucus. This was not a warning, it was a sign of impending respiratory failure. Once the lungs were filled with blood, it’s over.

Admittedly, I was now truly freaked out, scared for her, and for me. But she never saw that side of me. I stayed calm, and in everything that took place over the next thirty-three hours I was compassionately in control, until Annie died peacefully in our home.

And this is why we have to be careful and not paint dying at home with such a narrow brush. For Annie it was everything she wanted and went exactly as I expected it to. I know, I was a very fortunate man not to have this event come crashing down on us, and yes there was some chaos, but controlled chaos is not a problem. You deal with things as they happen. I had to take myself out of the equation, and always do what was best for Annie. And I did.

For a loved one, dying at home surrounded by loving family, is special. Dying at home should not be a privilege, it’s a rite. If hospitals aren’t a desirable place to die, and nursing homes are a crappy place to die, and dying at home with hospice is not all it’s cracked up to be—where can a person die in peace?

How about dying at home with a competent caregiver loved one, without outside intervention or hospice. If one has the fortitude, is a competent caregiver, understands the disease and what’s going on with the disease, knows what medications to use, throws in some unconditional love and the willingness to be selfless in all that needs to be done, “Bingo!” We have a winner! You’ll do a great job.

Yes, I’m a bit different, in that I really did love caring for Annie, and it showed in the presence of everyone that saw us. I was so proud of her for who she was, what she represented to others, her courage and strong will to live, which all made her an inspiration to other cancer patients. In her third month with cancer, the nurses at the cancer center and later the hospital coined the term, “Our little miracle girl.” People were in awe of her, and as one nurse said, “Her trademark smile.” She smiled through some tough times. She was never a burden to me, but caring for a terminally ill loved one or patient will never be easy. In fact it can be very difficult at times. But, I wanted so bad to keep her alive as long as I could, no matter what her condition was. Because I knew, when it was over, it was over forever. And almost five years later, I wish I was not having this conversation, and was still Annie’s caregiver.

After Annie took her last breath at home, her eyes popped open, and it was as if she’d seen the glory. When EMS arrived, along with the Fire Department and eventually the doctor to pronounce time of death, there was a consensus amongst them all—they were amazed, saying she died very peacefully as her face showed no signs of stress, fear, or pain. In a sense they filled out her “Customer satisfaction survey” for her. She didn’t suffer!

So I say to you. Dying at home can be a beautiful thing if handled by a competent caregiver, with some skill and tender loving care. I have no guilt, no regrets, and the only thing I would change is—the ending, if only for a moment.

View Annie’s online memorial.

You can read Annie’s Story. All proceeds go to cancer.