The Right to Die

This is a follow-up to the previous post, Without a Sound:

There’s a lot that bothers me about the handling of the news about Brittany Maynard, the 29 year-old woman who chose to hasten the end of her life after she was diagnosed with Glioblastoma Multiforme (GBM).  Probably the thing that disturbs me the most is the confident way that so many people have commented on her story and her decisions, as if they have any idea what has really been going on behind closed doors in her life.

As someone who was there on the scene for most of the 75 days between my dad’s diagnosis of GBM and his death, I feel like I have a fairly good idea what was going on, but I also know as a result of my experience that there are some things – even in highly publicized cases like hers – that anyone on the fringe or further out cannot know, and that’s the way it should be.  Health issues are private and personal.  The fact of the matter is that even with as healthy as Brittany looked when her image appeared in the news just days before her death we don’t know what the cancer inside her brain was doing to her, and we don’t know the intricacies of her diagnosis or prognosis.

Another thing that disturbs me is the way the media has portrayed Brittany as a hero, as if she was a crusader of sorts because of a personal choice she made to make another personal choice public.  To me, it seem like this implies that a person who does not make the same choices that she made is not as important or as courageous.  I'm glad that Brittany and her family had the opportunity to make the choices that they made, but I also think that people in other situations need an equal amount of respect and compassion. And my bet is that she neither viewed herself as a hero nor wanted to be viewed as one; like the rest of us, she was probably just doing the best she could to get through life and the hand that she was dealt in life.

The tricky thing about commenting on such an emotionally charged topic is that logic often takes a back seat in such a situation, as does respect for the views of others. I have had a hard time figuring out exactly what I want to say about Brittany’s story because I see the irony in producing commentary about the error I think others are making by commenting about the case.  The potential for expressing bias as fact, judgment, condemnation, shaming, and labeling is huge; this is what we tend to resort to when threatened or frightened -- and there's not much, if anything, in life that's scarier than facing pain and the end of life. When I think about the many comments that have been made about how Brittany chose to handle her medical condition, most of which have seemed judgmental and harsh to me, I can't quite get past the hypocrisy of saying "Shame on you for shaming someone else" or the irony of judging someone for being judgmental.

Here’s a confession: when I read about Brittany’s success in doing some of the things on her Bucket List, I felt jealous and even a little angry.  My dad had a Bucket List too, but he wasn’t able to get to any of the items on his agenda because of what GBM took from him from the moment the condition revealed itself.  I also felt jealous that Brittany’s medical team seemed to have communicated with her clearly about her options … or maybe she was just more able to figure out what her options were because the cancer in her brain hadn’t impaired that cognitive skill in her … yet.

My dad’s doctors, especially his oncologist, didn’t seem to have an accurate view of what was happening when he went into a downward spiral.  It seems like an oncologist would be much better attuned to medical facts so as not to succumb to the attraction of denial, but that was not the situation in my dad’s case.

I honestly don’t know what my dad would have done had we had all of the facts, had he been able to adequately process things, and had he had an opportunity to make a choice that would not put his family in jeopardy in any way.  I know that it would have been nice to have someone – anyone – ask him, or us, about his priorities.  The medical team was evidently too rushed, too uneducated, or too something to think to ask him, and we didn’t know to ask (or what to ask or how to ask it) or to speak up on his behalf until the very end.

As I've said and written about, the diagnosis of brain cancer, especially GBM, is particularly devastating for many reasons.  As a result of the attention brought to GBM by Brittany’s case, NBC news wrote an article about the unique challenges with brain cancer:

Why Brain Cancer is So Lethal

The neuro-oncologist who called me to announce that my dad’s case had been accepted by Duke University is quoted in the article:  “Brain tumors,” he says, “particularly but not exclusively the malignant ones … are in such an eloquent area of the body that surgical intervention may not be possible and other interventions such as radiation therapy may come with a fierce price.”  Yet another thing I wish I wasn’t in a position to have to know truth of.

Recurrence of GBM, the article says, is inevitable, at least as the treatment options now stand.  As I wrote about in the last post, this is especially true in certain variations of GBM. 

Another thing that bothers me about the coverage of Brittany’s story is the overuse of the phrase “death with dignity.”  Maybe it’s just a weird point of sensitivity of mine, but I don’t like the fact that that phrase seems to imply that there is no dignity in making a different choice – or in not having a choice – about the specifics of an impending death.  That feels like a really sick kind of competitiveness: who did death better???  Even the phrase “the right to die” seems muddled to me: I’m pretty sure that dying is a natural process rooted in science, not a “right.”  I think better terminology is “to hasten the end of one’s life” or something similar that better captures the fact that one's time on this earth is not going to be long with a diagnosis like this, no matter how things are handled.

We can’t know what the specifics of Brittany’s medical condition were, and we can’t know what she thought or felt when the news of the prognosis and the path she would likely have to travel were delivered.  In an instant, though, her choices - and life as she knew it - were stripped away.  I think, like a lot of people with terminal diagnoses who consider “physician-assisted suicide,” that she was desperately trying to gain some control in a situation that was horribly out of control, and I get that.  If you’ve ever seen someone have a seizure, if you’ve ever seen the terror and confusion in the eyes of someone who is aware that their own mental state is impaired, or if you’ve ever seen the look of humiliation and angst on the face of an adult who has wet his pants because he couldn’t make it to the bathroom in time, then you might have a little bit of an idea of what she and her family were feeling.  If you love a person who is having to endure things like this, plus a significant amount of often unrelenting physical and emotional pain - and who is being told that death is imminent, then there’s a chance that maybe you can relate to what it’s like to feel such a desperate need to try to establish order and control. 

I wish I could say that I can’t imagine what it took for Brittany’s family to support her decision; I’ve tried thinking about what it must have been like on their last night with her or in the last hour they had together before what they knew was going to happen happened; it’s a different kind of horror, I would imagine, than what my dad and my family experienced – but, I would guess, the same kind of love.

 This is a song that my dad loved, played by a musician named

Bernard Stanley"Acker" Bilk who died earlier this week. 

Moments

I think most people only have a handful of times in their lives when something is happening and they realize in that moment that they are going to remember it for the rest of their lives.  Our other memories, things we think about after the event has come and gone - they come back to us unexpectedly, out of the blue, without our having consciously collected them along the way. But the ones that we know will stay with us as they are occurring are extra special, because we get to live them live in real time and in memory. 

As hard as it is to think back on the time when my dad was sick, I realize that the fact that we were aware of the risk (probability) that his time was limited allowed us to pull in those memories while we were focusing on the specialness of that time. Some of the time, I was functioning in the moment, but I was also deliberately hoarding memories of what was going on. I wasn't trying to hold onto those things because I thought Dad wouldn't be around much longer, though; usually I was logging those moments because I thought he would beat the damn cancer and we would be able to look back and think this is how we made it!!  And even though it turned out we didn't, at least we were afforded those memories, both the good and the difficult, to remind us of the fierceness of our love for one another. 

I dealt with my dad's illness with staunch denial of the fact that the devastating prognosis could apply to us, and, looking back, I think it turned out to be for the better that I wasn't aware of many of the last times I'd have with my dad because of that denial.

In going through life, we tend to think we will always have more time, which leads us to think that it's ok to rush around, to put things other than our loved ones first, and to worry about the past and the future instead of letting everything else fade away and just appreciating the simple physical presence of those we love.  Hearing the words "brain cancer" allowed me to stop all of that and to recognize that I needed to just be with my dad and the rest of my family, even though I didn't let myself think that there wouldn't be many more opportunities to do that same thing.   

And afterwards, I had to see not just that I'd been wrong in thinking the prognosis was wrong, but I also had to realize another hard thing as part of the grief: when the dust starts to settle after the first time you lose someone that you truly love, in the darkness it hits you that your days together with everyone else that matters to you are numbered as well.  And somewhere along the way in dealing with the horror of that realization, you may see the importance of paying attention, of stopping to smell the roses, of committing the moments to memory, because doing so is one of the few things that may possibly help to ease the deep aching when we do have to come to find out that the lasts were just that.

All the inconveniences, the irritation, the stressing out over things, the wishing for things that don't really matter at all seem so insignificant, so stupid, and in some cases so selfish when we put it into perspective.  At some point, for all of us, it will be too late.  We have to do our best to capture those moments now, before they actually become lasts, before there is no hope of recapturing them, before the regrets set in and that's all that we have left.

I still have moments when I don't believe it really happened or that he's really gone, even now, 23 months later.  Damn I miss him. 

What I wouldn't give to see this smiling face again //

"There are no goodbyes for us.  Wherever you are,

you will always be in my heart."  ~Mahatma Gandhi

The Why of It

Sometimes I can't clearly remember the me that was before my dad got sick, the person who thought all problems could be solved with effort, the person who believed the world pretty much made sense, the person who believed that good came from good.  

Sometimes I still don’t believe that my dad isn’t still here with us, and – here’s the whole truth – when I have those moments of thinking that, I sometimes let myself bask in the glory of that belief for a little while.  It feels like lying on a beach, soaking in the sun, when these moments occur, but then, inevitably, the sun goes behind a cloud or, worse, a thunderstorm appears from out of nowhere, just like Dad’s cancer did.  

Sometimes I think that whole thing about the five stages of grief is inaccurate.  There is such a flooding of emotions, a constant state of flux, and I’m not sure it isn’t essentially stagnant since there doesn’t seem to be an end in sight.  If the stages do exist as stated, I guess I am clinging onto Denial and fighting off Acceptance, almost as vigorously as I clung to Hope as I fought Dad’s cancer.  And the Anger, I am holding onto that too.  I want revenge, I want justice, I want to lash out; I think that would feel good after all that has happened that feels so awful.  Hell, what I really want is to have my dad back, happy and healthy, and I don’t think it’s too much to wish for that to happen, if only in my memories.

Because mostly what I remember these days is the him while he was sick.  I don’t understand why that is!  I had him for over four decades before the time when he had a zipper of a scar on the top of his head and confusion and fear in his eyes.  Why is that the way I am seeing him now, as he was during just ten of the 2194 weeks I had him during my life?  

Dad never asked, “Why me?” when he was sick.  He did wonder why he got brain cancer, but he thought about it in terms of what he had done to cause the cancer; he thought his health was his responsibility.  He wondered aloud if it could have been caused by the chlorine in the pools where he did so much swimming; he said he thought maybe it was somehow from too much running or from having too many bike wrecks.  While he was in rehab, he asked the neuropsychologist if the cancer came from talking on a cell phone too much, and, even though Dad wasn’t one of those people who seems to have his phone permanently connected to the side of his head and even though to date there is no conclusive evidence that there is a link, the guy told him there could be a connection.  Dad asked the doctors at Duke if they knew what could’ve caused it, and the team of neuro-oncologists there who are some of the leaders in the world in the field of brain cancer told him the causes were unknown.  It made me so sad to see him guiltily ask these questions, all framed with self-reproach, and somehow remembering that now fuels my anger even more.  DAMN that he had to wonder and worry and that he still somehow thought he needed to apologize for having gotten brain cancer.  Not right, not fair.  Add that to the list.

Dad wasn’t ever one to over-think or really contemplate the “why” or “why not” of things; before he got sick, he used to joke around about the saying, “It is what it is.”  “Well, what else would it be?” he’d say facetiously.  

But I questioned, and, when I started to realize there would be no answer, I said, “It’s not fair!”  It really isn’t fair, is it?  

And yet, it doesn’t escape me that none of us promised a perfect life nor does it that despite the fact that what we went through was terrible, it could have been worse.  I’m sure most people in a tragic situation want to know why it happened.  I guess it really doesn’t matter, though, because the fact is that it did happen, and things cannot be undone or changed.   If I knew why would it make me less sad; would I miss my dad less?  Maybe I would be less angry, but of course that is pure “grass is greener” thinking.

I know that I am so very lucky to have had my dad in my life for as long as I did, and I still consider him to be an important part of my life and my perspective.  But I struggle all the same, and again and again my thoughts come back to the same rejoinder: “It’s not fair!”

I used to hate it when I was a kid and I heard a grown-up say, “No one ever said life was fair.”  I always wanted to say, No kidding, but how is pointing out that something isn’t fair any different from commenting on the weather?  It is what it is, and no one said it wouldn’t be, but it kind of helps to say it out loud.  

I can’t imagine a scenario where a person would be told he is terminally ill, and think oh, yeah, well, that’s fair.  That’s ridiculous!  I am trying to come to terms with the fairness issue, the anger, and the burning in my gut, and I'm sure it would be easier if I could stop comparing and thinking about what I think should have been.  I know what I have to do, to move on past the Anger, to honor my dad:  change my perspective. His death challenged me and made me acutely aware that our paths are never certain. A traumatic loss challenges our belief system and the core of life's assumptions, and acceptance is a major hurdle when death is traumatic and/or sudden (and I do consider my dad’s to be both). Telling the story is supposed to help make sense out of the senselessness. I’m not sure that goal will ever be accomplished for me, but, just like my dad did, I plan to give it my all and then to focus on feeling lucky for what I have and have had instead of the alternative.

I believe that imagination is stronger than knowledge -

That myth is more potent than history.

I believe that dreams are more powerful than facts -

That hope always triumps over experience -

That laughter is the only cure for grief.

And I believe that love is stronger than death.

 ~ Robert Fulghum

Part 49 – Being Called Home

Continued from Part 48 

Even more than I had hoped it would be, having a crisis nurse from hospice at my parents’ house around the clock was a relative bonanza for my family; it took some of the uncertainty and the heaviness out of the situation and freed up my mom and later my sisters and me from focusing on the medical care needed so that we could settle into our roles in our family, as it was, one last time.  It was such a relief to have the two crisis nurses that came – one from 7 p.m. to 7 a.m. and the other from 7 a.m. to 7 p.m.  – there to provide their expertise and to support and care for us as well as for Dad. For the first time since Dad had gotten sick, we didn’t feel the entries in the Notebook were necessary; in spite of the fact that we had spent so many days with medical staff all around us when Dad was in the hospital and while he was in rehab over the past ten weeks, it was the first time we really felt that someone other than one of us was up to the task of taking the reins in his care.  

Around noon on Tuesday, January 4, when Mom called to tell me that the hospice nurse had advised her to call to let us know that we needed to come home as soon as possible to be with Dad, she said, “This is the hardest call I’ve ever had to make, calling you all home.”  Through the fog of tears, desperation, and (still) at least a little bit of disbelief, though, I was grateful for the chance to come and for the chance to get to be with Dad again; somehow even then I had the perspective that the message of that phone call could have been worse.

On the road to my parents’ house that day, hope and denial were still so entwined for me, although the goal of both had obviously shifted.  My hope was that peace and comfort would be able to be provided for Dad and, truth be told, maybe even that he would need me one last time to play a role in that provision.  

I had read in some of the material the hospice nurse had shared that a person who is dying may sometimes wait for certain people to be with him before he goes on ahead and other times he may wait to be alone.  As much as I selfishly wanted to spent every last bit of time that I could with Dad, I told myself that, just as had been my family’s mission during the course of Dad’s illness, I had to be prepared to do whatever it took to care for Dad, no matter what that meant.  

I remember having to consciously force myself to stay in the moment and to focus on the act of driving on the way to my parents’ house, but I don’t remember what I thought about on the trip.  Denial was really what served as the vehicle that got me to my parents’ house that day; it was the glue holding me together so that I could function at all.  Hearing my mom say that time was very limited, that we needed to come home was like watching the last drop of glue being squeezed out of an already almost-empty glue bottle.  

I parked in front of their house and walked up the steps and in the front door, almost like it was a normal day.  I quickly hugged my mom and then went into my parents’ bedroom.  I saw my dad lying in the hospital bed – it looked like him, but it didn’t.  I could see the outline of his body underneath the blankets on the bed, and I could see his chest slowly rising and falling in a slow rhythm. The true vulnerability of his life could be felt in the room.  A startling thought popped into my head: “This life as we know it is going to end before I am ready. We’ve made it here, and I will do whatever it takes to take care of him, but I will never be ready.”  I remember the complexity of the emotions that were present in that moment, and I can still feel the numbness and the intensity that were so intermingled I could hardly breathe.

I couldn’t really believe it, but here we were.  Everyone had had such faith that he would beat the odds, and I was still surprised – shocked really - that his body that was so strong could not take it.  That we had gotten here this fast, or at all.  That we weren’t going to be the ones to beat the odds.  As I sat down in the hard chair beside the bed and took his hand in mine, I reflected back on the words that Dad had said repeatedly over the last few days when he was in the hospital:  “It’s just too much.”  He was right – despite his best efforts and those of the people who loved him, the cancer and the treatment were just too much.  What was happening was too much, and so was the grief, already.  Unimaginable, even in the moment.  All that was left to do was just to be there with him, to hold his hand and talk to him even if he couldn’t do that back anymore. I am not a touchy-feely kind of person, but, when there was no longer any need to get his favorite foods for him, when there were no doctor visits to schedule, no errands to run, no in-depth discussions to have, and no treatments to seek out for him, using touch to comfort and care for my dad was what I instinctively felt like doing.  Based on his reactions from over the past week or so, we knew that much physical contact or noise would likely cause him discomfort, and so again we followed his lead: we didn’t move him in the bed except when absolutely necessary, we didn’t play music, and we didn’t turn the TV on.  For our comfort and hopefully for his, we took turns lying next to him in the hospital bed or sitting right beside his bed and just holding his hand, sometimes talking to him, sometimes not, seeking that connection and doing what we could to let him know that he wasn’t alone.  

Mom had called my siblings at the same time she’d called to tell me to make my way to my parents’ house; Nancy left work and arrived not long after I did [she actually got a speeding ticket on the way there; not wanting to spend extra time explaining and probably as part of the cloak of denial she was wearing too, she took the ticket from the officer and got right back on the road without mentioning a word about the reason for her speedy driving], and Jennifer, two thousand miles away, booked a flight that would leave the next morning.  Our brother Lee, who lived 800 miles away, planned to fly in the day after that.

Marilyn, the crisis nurse that day, quietly alternated between writing notes in the chart, gently checking Dad’s vital signs, and efficiently administering medications to him, which were all being given in liquid form at that point due to swallowing difficulties.  She was very skilled and very kind; she reminded me of a woman with whom my parents had been friends when I was a child, which seemed comforting.  She asked if we wanted to be alone in the room with him and then considerately stepped into the kitchen for a while when we said that we did.  While Nancy and Mom sat with Dad, I followed Marilyn into the kitchen and asked her, “What can I do?”  I think I meant for Dad, but maybe I meant just in general.  I felt restless and so completely useless.  For all that there had been to do during the rest of the time Dad was sick, I was at a loss for what to do now. Marilyn folded me into a hug and then she told me: “You need to reassure him. You have to tell him he can leave when he needs to.”  Oh, god, how I didn’t want to hear those words, but I knew she was right.  I tried to steel myself for what I knew had to be done and what I knew was going to happen.

A little while later, as I sat quietly with Dad, I thought back to less than a week ago when decisions and plans were hanging in the balance and when Dad, in the meantime, was barely hanging on.  Late in the night on one of the last nights he was in the hospital, he brought up the subject of dying again, this time in reference to a dream he’d had when he was in the ICU a couple of days before. “It was so scary!” he said, and then he replayed the dream for us. In this one, he and several other people were hanging onto a wire by their hands.  A man he didn’t recognize was going down the line of people counting, and everyone in the dream knew that if the man called out an odd number when he came to a person that that person would be dropped from the wire and would die, but if he called out an even number, that person was spared.  Dad said he was so scared that he was going to be “counted with an odd number.”  He said he held on so tightly to the wire because he didn’t want to die because he was so afraid that we wouldn’t know where he was or how to find him if he did lose his grip.

Sitting with him in his bedroom as the sun started to dip below the horizon outside my parents’ bedroom window, I told my dad that he would never be lost.  I promised him that I would take care of Mom and Grandmom and my siblings and that we were so thankful to have had him to pull all of us together as a family.  I carefully put my head on his shoulder, and I said, “You can go.  But you have to come back to me!”  Immediately after those words had left my mouth, Dad started stirring in the bed, moving around and kicking the covers in an agitated fashion.  Instantly I knew without a doubt that he’d heard me, and I was ashamed of the selfishness behind what I knew he thought I was saying.  “Oh, Dad,” I cried, “I know your body can’t do it anymore.  I know you are doing everything you can to stay here with us, but it’s ok if you can’t.  You’ve finished the race; you’ve done everything you needed to do, and we will be ok.”  He settled down again, and I just sat there, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear that too.  I wanted to tell him that what I’d meant was that I hoped he could try to send me a sign, to come and be with me and the rest of the family later, in spirit, but I didn’t tell him that; I didn’t want to cause him any more distress, and so I told myself that he would do it anyway, without being asked, if he could find a way after he’d gone on ahead.

Sitting there with him in that room, holding his hand and watching over him: it was almost an out-of-body experience for me.  Who is this lying so helpless in the bed – it’s not my dad who was so strong, so active, and so full of life.  Who is the girl crying and telling him that she will be ok without him – that doesn’t seem like me, I’m the girl with the pigtails climbing trees or running alongside my dad, and I'm not sure it's true.  It didn’t seem possible, or real.

But it was real, and time was marching on.  The night-shift nurse came to replace Marilyn.  As the night wore on, Mom, Nancy, and I decided to take turns trying to sleep.  It felt odd yet also comforting to have the night nurse watching over us.  Lying with Dad that night, halfway in the hospital bed and halfway at the edge of my parents’ bed, I tried to focus just on Dad’s breathing, but my mind was racing.  I kept thinking about how the many things that usually seemed so important, so urgent, really weren’t at all.  It was the air, breathing, and being together with those we love that were paramount.  I just wanted to hold onto that togetherness for as long as I could, but, even as I drifted in and out of sleep that night, I knew all of that was out of my control, and I felt completely helpless.

When I think back now to that night and to the next day, which would be Dad’s last, I remember him as being so very vulnerable and undefended. Before my dad had gotten sick and before I’d watched his valiant efforts during the time he was sick, I thought those things implied weakness.  But, over the course of the past ten weeks, I had come to understand that it takes true courage to be that way without resentment and rage. In the end, Dad, with his kind heart and his trusting nature, folded himself into our arms, and that, along with holding on, was his final gift to us.

Up Next … Part 50 – Saying Goodbye

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 HERE, he 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 90^th 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 67^th 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