Tuesday, March 6, 2012

Part 47 - Rose-Colored Glasses

Continued from Part 46

I once read that all mammals have approximately the same average number of heartbeats in a lifespan. If that’s true, it means that a smaller animal with a faster heartbeat does not live as many years as a human with a slower heartbeat. If that’s extrapolated to people, then a well-conditioned athlete with a slower resting heart rate theoretically would have a longer life than an out-of-shape person with a higher heart rate.  Not this time, though: that’s what we learned when Dad got sick and what was at the root of the utter sense of shock and disbelief that everyone who knew him felt first when he was diagnosed and then even more so ten weeks later when he died.  

There was no disputing the remarkable physical shape that Dad was in just prior to his diagnosis.  I'm not sure of the exact statistics, but I feel pretty certain that only a handful of 67 year-olds in the world can swim 2.4 miles, ride a bike 112 miles, and then run a 26.2 mile-long marathon, all without a break, and that is the distance of the Ironman triathlon in which Dad was set to compete.  Dad was well-trained, and he was ready for the race, and that was part of the reason we were so shocked by the diagnosis and by the events that followed.

Besides my dad’s exceptional physical condition, there were lots of things that influenced my family’s beliefs about Dad’s prognosis.  Even after the devastating diagnosis with the horrible prognosis was handed out, we had much more of a bias than is typically present about what we thought the outcome would be in Dad’s case because of some specific past experiences.  

Hit by a car while running a marathon ... still lucky!
As I detailed at the beginning of Dad’s story HEREhe had an extensive history of accidents and injuries and even some medical issues that came as a result of his athletic pursuits. More than anyone else I’ve ever known, though, Dad always seemed to have luck on his side in this type of situation (and a little perspective: it’s technically not lucky to end up with a broken leg as a result of getting hit by a car, but Dad always considered himself to be lucky because he considered other potential outcomes); historically, he was very adept at landing on his feet and at successfully dodging a bullet health-wise.

Another thing that made us think that Dad would defy the odds after the diagnosis was our experience with his mom, who had been very ill for over two years and who in fact had been receiving hospice care since the month before Dad was diagnosed.  Just after Grandmom’s 90th birthday, my parents met with her doctor and, due to severe swallowing problems and progressing weakness affecting her, they were told that she likely had only had a few weeks left to live.  But her doctor and the hospice staff were wrong: she hung in there for almost exactly six months after she entered hospice care, and, in a story I will tell soon, I am certain that her death was directly linked to the timing of my dad’s.  Before she’d had a stroke at the age of 87, Grandmom had lived a very active, independent life, and that’s the lifespan I had expected for Dad (or maybe even longer, given current and future medical advances). Grandmom was tough, but she was obviously a generation older than my dad and, unlike Dad, her health had been declining for several years.  So when I heard the term “terminal” and learned about the expected prognosis for someone with Dad’s diagnosis, I used my family’s experience with Grandmom to our favor and decided to believe that the information didn’t apply to Dad, just like what we were told about Grandmom didn’t come true.  Simply put, I figured that if she could defy the odds and live six months longer than had been predicted, surely Dad, who came in younger and healthier and stronger, could KICK CANCER’S ASS, probably even with one hand tied behind his back!

Although I do it myself sometimes for lack of more appropriate terminology, it really isn’t very accurate when what my dad and my family went through is referred to as “a battle,” because this is another thing I came to realize during Dad’s illness: A battle is something that can possibly be won, and really, against GBM (the type of brain cancer that Dad had), there is no winning.  For many other types of cancer, fortunately, early detection and cure rates are increasing, but not for GBM.  We’d heard so many inspiring stories, even some about people with other types of cancer who’d been given a not-so-great prognosis and had proven the doctors wrong, and we expected a story like that for Dad.  Through networking on cancer support websites on the Internet, I made contact with a few people who had had brain cancer and survived long term, a few even who’d reportedly had GBM.  If they’d survived, why couldn’t Dad?  To me at the time, it almost seemed like a given that my strong, persistent father would pull through since a select few others had been able to do so.  But, as we came to find out, in the vast majority of cases of GBM, it’s less of a battle and more of a siege:

Looking back, I think Dad’s inability to grasp his own diagnosis made it harder for us to do so as well (or possibly: it made it easier for us to stay in a state of denial).  On the day before Dad’s surgery, which happened to be his 67th birthday, he wondered aloud about the upcoming surgery and about what was wrong, as he put it, and he said, “Well, I know it’s not cancer.  I’m too lucky to get cancer!”

"Correction, Dad," I thought.  You are “too” lots of things to get cancer:  Too in-shape, too much of a positive thinker, too healthy, too in-the-middle-of-life, too much of a land-on-his-feet kind of guy, too much of a Good Guy, too NEEDED by so many people.  Like Dad, I didn’t believe it could be cancer, and, even after we were told that it was, I still didn’t really believe it was or that what would end up happening could happen.

Another thing that contributed to my family’s disbelief in the diagnosis and the potential outcome - to our wearing of rose-colored glasses - was that, given his history and fantastic physical condition, even the medical people involved in the case couldn’t believe the diagnosis or later the decline. One of these people was his doctor, a general practitioner who had treated him for colds and the like for about a decade.  

News travels fast in a small town, and we knew this would certainly be the case in the community in Missouri where my parents had lived prior to their move to Tennessee, the town where my dad’s company was based and where he still resided part-time so that he could work in that office.  And so on the day after Dad’s surgery, my sister Jennifer and I decided to call Dad’s hometown doctor to get his “take” on the situation; I guess it was part of our “leave no stone unturned” plan.  When we got Dr. Rod, as Dad called him, on the line, he said that he had heard the news about Dad.  “I just can’t believe it!  I saw him recently, and I thought he was the picture of good health!” he said.  Me, too, Dr. Rod; me too.  He wondered aloud if a course of steroid nasal spray that Dad had taken in the recent past might have caused a fungal growth in his brain:  “Maybe that’s what some or all of the mass really is,” he said hopefully.  [I later mentioned that idea to the neuro-oncologists at Duke, and they put Dad on an anti-fungal medication, just in case, or maybe just to placate me.]  And that’s how we learned that denial and bargaining are dishes enjoyed not just by those who love a patient but also sometimes by medical staff members too, a fact that we would see yet again with Dad’s oncologist towards the end of Dad’s illness when I had to point out how weak Dad was so that the oncologist would realize that it was time to call in hospice.  It's often said that there is strength in numbers, and what I came to see is that there is also great strength of denial in numbers as well.  With Dad, in fact, it seemed that pretty much everyone involved – at least everyone who knew him as the Ironman athlete that he was – was wearing rose-colored glasses.   

Dad, hammering in a stake to put up a tent in a field, not long before his diagnosis
Another factor related to our expectations about an exceptional outcome for Dad came from Dad’s oncologist and later, on an even greater scale, from the team of experts at the Brain Tumor Clinic at Duke University.  Over and over, we were told that the treatment plan being used for Dad had great healing potential and specifically that the medicine he was getting, Avastin, was “a magic bullet.”  Maybe I just didn’t hear and/or process it at the time, but I don’t recall a risk of a decline at the rapid rate at which it occurred for Dad ever even being mentioned during the pep-talkish treatment plan meeting at Duke or at any of the doctors’ appointments we had.  As the oncologist said the day Dad was admitted to the hospital for the second time, the chemo Dad was on wasn’t supposed to suppress his immune system; an infection as severe as he had hadn’t been seen before in others on the same treatment protocol.

As I’ve mentioned in the telling of this story, I served as the Microscopic Improvement Recognition guard during Dad's illness; whenever I was around Dad while he was sick, I was always on the lookout for even the smallest sign that he was getting better: after the surgery, during rehab, after the Avastin protocol had been started, and even once the massive amounts of medications were administered when Dad was so sick during his second hospitalization, I was diligently watching for an indication of his getting better.  On the day after Round 2 of the Avastin/chemo treatment, when I noticed that he was regaining some sensation in his left arm, I was convinced that was a sign that he was going to pull through.  I even said something to him that night about maybe writing a book one day about his incredible recovery.  “We’ll see,” Dad said, either not really interested in thinking about such a project or not fully believing that he would have such an impressive story to tell (Dad, the Ironman athlete, never thought of himself as that big of a deal; as dedicated, kind, and positive of a thinker that he was, he was also just that modest.)  “We WILL see, Dad,” I told him, with total conviction that he was going to get well.

The last reason for the rose-colored glasses wearing during Dad’s illness was perhaps the most reasonable:  we had to stir in some denial and some hope just to stay afloat in our massive state of shock, in the midst of the trauma.  

Even when Dad was so weak and sick in the hospital right before he went home on hospice, I was convinced that he just needed nutrition and sleep to get better.  I will never forget the words he said late at night a couple of nights before he got to go home:  “I need to remember to tell Mom [he meant my mom – he often referred to her as ‘Mom’ when he was talking about her to my sisters and me] how much I love her and that I couldn’t make it without her.  I am going to fight, as long as you all just help me remember to fight!”

I planned to help him remember and to help him fight, but, after we got him home, I realized it wasn’t really under my control or his.

While our bias was helpful in allowing us to hold onto hope while Dad was sick, it has served as a barrier in the processing and accepting of what ended up happening.  It’s why I thought he would be with us for a long time still, so much so that I left to go home that first Sunday in January after he’d come home on hospice.  It’s why I sometimes still talk about him in the present tense, and it’s why, even after everything, I still don’t fully believe that he is gone.

Up next ... Part 48 - I'll Love You Forever

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