Sliding Doors

I recently had a conversation with a friend of mine about both of our parents' battles with cancer, his mom and my dad.  Both were diagnosed at an age when they appeared to be in the prime of their lives, on the cusp of retirement, in seemingly good health.  My friend's mom was a long-time smoker but at his insistence had quit smoking a few months before she was diagnosed with the lung cancer that took her life a short time later.  As he was talking about her illness, he told me that he will always wonder if by encouraging his mom to quit smoking he had somehow caused her to get cancer.  He said he knew it wasn't really rational to think that but that he couldn't shake the thought that somehow the thing that had changed in her life before the diagnosis was made was not fortuitous, that there was a link.  I think in the greater scheme of things, human beings tend to want to believe that cancer (or anything else) happens for a reason, that where there's an effect, there must be a cause.  That's what our logical minds often tell us, and it's our way of allowing ourselves to feel like we have some sort of control over, well, anything, when in many cases we just don't.  No matter what the case is, no matter what the cause - if any - cancer is always unfair, and that's really the bottom line. 

Hearing my friend say that he felt on some level responsible for his mother's death made me think about the way that in any death, in any circumstance, there is always room to wonder: what could I have done differently, how could the outcome have been avoided, WHERE DID I LOSE CONTROL?

That conversation also started me thinking about the difference between guilt and regret, two emotions that are different from each other yet are often confused, especially when people are grieving.  In my opinion, the term "guilt" is frequently misused; the term actually refers to something that one feels he shouldn't have done because it was wrong.  In many ways, guilt can be a disabling affliction, just like Cancer.  And, also like Cancer, guilt is something that can happen to anyone at any time, no matter the circumstances.

Regret, on the other hand, is what is felt when when something has happened that has resulted in a loss or a missed opportunity, despite the fact that the person had no control over the result.  Regret occurs when there were circumstances beyond one's control; in short, regret can arise when one makes a mistake. The difference is that what was done in the case of regret wasn't wrong, even though what happened as a result was undesired.  

Many times I've heard people say they feel guilty when a loved one gets cancer, even when that loved one becomes a "Survivor."  I've heard people say they feel guilty for not doing more or for not being there for a friend or family member who has Cancer.   What they more likely mean in both cases is that they regret what happened, even though it wasn't an outcome of their actions.  

I know personally how cumbersome it is to harbor feelings of guilt and/or regret; it is, in a word, awful.  But the most awful thing of all is when the person who is sick feels guilty: They may feel guilty that those who are caring for them are missing work and other things, they may worry about the money involved in the treatment of Cancer, they may feel that they are a burden on others.  They may wonder if they did something to have caused the Cancer or if they didn't do what they should have done to prevent it.  One of my friends who battled Cancer years ago once told me that while she was sick she felt guilty for feeling jealous of people she knew who were healthy, and she said that after she was done with treatment she felt guilty for getting better when so many with Cancer don't.   And although "regret" is the better word to use here, we tend to say "guilt" much more often.

Why does that distinction matter?  Maybe because feeling guilty is, in a sense, blaming ourselves for something that was in no way under our control and/or for something that occurred as a result of an innocent action.  If someone is justifiably guilty for something, they should take responsibility for what they did and then make an effort to make amends whenever possible.  Inaccurately labeling regret as guilt can serve as a huge barrier in the grief process; when one feels responsible for a loss when in fact that person had only the best intentions and had no control over what ended up going wrong, it's easy for him or her to get "stuck" because their perception of what happened isn't based in reality.

All of this reminds me of the concept of the movie “Sliding Doors” (If you haven’t seen it I recommend that you do **Caution: not for kids!**), which is that it is possible for even a small decision to forever change the course of a life.  Surely the vast majority of adults have done some things in their past that they wished they’d done differently.  And when someone you love dies of a terminal illness (or maybe when they die from ANYTHING), it doesn't seem like it would be that unusual to feel at least a little bit of regret, and in some cases some guilt may play a role as well.

Looking back to the time when my dad was sick, part of me wonders – and will always wonder – if I did enough.  If I could’ve done more.  If I should’ve played something differently.  And if I had, would it have made a difference?  

Sometimes I think about the Sliding Doors concept, about different ways that things might or might not have been done as we tried to cope with his illness.  I guess technically mixed in with that wondering are some blame and some anger, both of which I feel are completely justifiably directed towards the health care professionals who in my opinion didn't do what they should have done.  (More on that later ... )  But I also find myself thinking about what-ifs from other time periods in my dad's life - both from before he got sick and whenever I imagine how things would be if he were still here, either having been miraculously cured or still fighting.

As I've mentioned, my dad was involved in lots of accidents during his life, most of which occurred out on the road during his physical pursuits.  Although I can't for the life of me figure out why I do this, I sometimes think about how things would have been had he sustained an injury with long-term effects in one of these accidents.  I always thought Dad had somehow ended up with nine lives (Maybe that's why he considered himself a cat person more than a dog person.)  Now I am left to wonder if he did but I somehow lost count along the way.  To some people, I guess it might seem like my family should have discouraged him from doing things like the running and the biking and the adventure races that sometimes resulted in serious injuries for him, but we always protected and defended his right to continue despite the risks because he loved it and, to be really honest, maybe because we caught a little bit of his "I'm too lucky for anything really bad to ever happen" fever along the way.  

When Dad talked about people he knew whom he thought had "gone downhill" over the years, he always said he hoped that didn't happen to him.  In fact, I distinctly remember several times hearing him say that he hoped when his time came that he went out running.  In a way, I guess he got his wish.

Why is it that "If games" are so common with grief: If only _____, things would be different. If I'd encouraged him to go to the doctor.  If we'd found out sooner.  If we'd chosen a different hospital or different doctors.  I guess it's because whenever our minds create these alternative scenarios, we can imagine an alternate reality to the one that we just don’t want to accept. These counterfactuals allow us to hide the truth, to conceal the reality of pain, if only for a little while.  

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

Shhhh! It's Brain Cancer! (Part Two)

A brain scan of a GBM tumor

Just so I don’t leave anyone hanging after Part 1 of this message, here are the follow-up answers to the questions posed in that post:

*Some famous people who have had Glioblastoma Multiforma (GBM), the type of brain cancer my dad had, are politician Ted Kennedy (survived 15 months after diagnosis), composer George Gershwin (survived 12 months), actress Ethel Merman (10 months), politician Lee Atwater (12 months), Pulitzer Prize winner David Shaw (3 months), CIA Director William J. Casey (5 months), MLB pitcher Tug McGraw (the father of singer Tim McGraw, survived 9 months), and South Carolina Governor Robert McNair (50 days).  Also included in this list are two men who wrote about their personal experiences with GBM: famous author John Gunther, who wrote "Death Be Not Proud" about his teenaged son Johnny who lived with GBM for 15 months after diagnosis, and Ivan Noble, BBC journalist and science writer who published articles about his own GBM diagnosis after which he lived for 2 years.

In addition, many more celebrities have had metastatic brain cancer, which is another type of cancer that has spread from another part of the body to the brain, and lower-grade types of primary brain cancer, both of which are obviously very serious but neither of which is as catastrophic as GBM.  There are eight types of primary malignant brain cancers; each originates in the brain and does not spread outside the central nervous system.  Of these, GBM is the most aggressive and the most deadly.  The median survival rate after a diagnosis of GBM in an adult is twelve months.  A GBM tumor typically doubles in size every 3-4 weeks, and so if even a few cells are left behind after surgery, the tumor can become quite large again in just a few months, if follow-up treatment is not successful.


Dad’s neurosurgeon removed 80% of his tumor.  A scan done 3 weeks later showed that the remaining tumor had already doubled in size, which meant “there was limited benefit of the surgical reduction” (yet another medical term we learned).  In layman’s terms, when Dad’s tumor was discovered, it was already the size of a racquetball.  It was cut down to about the size of a grape, but in only 3 weeks it had grown to the size of a walnut. 

 

During the course of Dad’s illness, I learned that Hope is a very tricky thing:  one needs JUST ENOUGH to keep going, but TOO MUCH can be every bit as dangerous as not enough. 

When one is slapped in the face with the news of a loved one’s being diagnosed with a catastrophic illness, Hope is like a pair of scissors.  It can be useful or even necessary at times to get the job done, but it’s not something with which one should EVER run.

I’ve said before in this blog that one reason my family was lucky in the face of Dad’s illness was that we all somehow pulled together, taking turns being strong and using our individual knowledge and skills to push things along.  We all also did whatever we had to just to get through each day.


In a kind of foreshadowing to the way I am now using this blog as a tool to process and record, one thing that seemed to help me while Dad was sick was to post news about what was going on for our family and friends to read on Dad’s Care Page.  One of my sisters helped me with the wording of many of the entries, and we spent time almost on a daily basis talking about what to include in each posting, after which I updated the page.  For the first nine weeks of the ten weeks Dad was sick, we chose to view his illness as a challenge instead of a catastrophe.  Running with scissors, I know, but at least we were moving forward instead of standing still in a state of shock.

I did what I could to keep the news in the posts positive and upbeat for four reasons:  because I was sure that at some point Dad would read the entries; because I wanted SO DESPERATELY for there to be a good outcome (“good” being a VERY relative term); because I felt it was likely that Dad would be able to go back to his job in some capacity at some point, even if he was never CURED, and because I wanted to protect Dad from what little I could, to preserve what little dignity for him that I could, and to give him what little I had to offer him.  I didn’t think it out like that at the time we were posting those bulletins; I really didn’t have the energy, time, or even the capacity to analyze things like that at the time.  But, looking back from this vantage point, I can see that’s why the posts were the way they were.

This isn’t to say that the updates weren’t truthful - because they were!  It’s just that certain details were not included, especially things concerning Dad’s memory and reasoning, which somehow seemed so much more private than his physical condition and function did.  It was hard to put into words how at times he seemed like himself but then at other times he didn’t.  His sense of humor, his courage, his determination, and his compassion were in place as usual.  He believed COMPLETELY that he was going to get better, as did we.  Even now as I write about the cognitive changes in him, I feel like I should tell him that I’m sorry for divulging what seems like such a private thing.  I can describe the physical challenges he was having (issues with sensation and strength in his left side, balance, and endurance), but when it comes to talking about the way he needed supervision for safety, constant reminders and reviews of what had happened and what was going to happen, I feel like I am betraying him. 

Only when it became undeniably clear that he wasn’t going to get better did it start to feel appropriate instead of disrespectful to include more of the details about Dad’s condition for public knowledge.  I didn’t want to compromise anyone’s Hope, but I wanted to be as honest on paper as I was able to be with myself in my head and in my heart.  Never did I use the words terminal, end stage, or poor prognosis.  When we brought Dad home on hospice, I vehemently felt that those of us in my immediate family who were caring for him could not and should not have to withstand any criticism or judgment OR EVEN questions or pity for having made the decision to call in hospice.  We didn’t want anyone to see our decision as giving up; rather, we were respecting Dad’s wishes, which he had been very clear about before his diagnosis and while he was sick.  Again, I was trying to protect Dad – and myself and my family – in a situation in which that brand of protection didn’t carry much weight.   We were paving the road, though, as we were starting to be unable to deny or defer what was coming down the pipe.

Acceptance, depression, shock, anger, and so many more emotions came in waves and had many layers for those of us who were close to Dad during that last week.  Mostly we were just trying to spend every minute we could with him, at first to hoard as many more memories as we could squeeze in to the time we knew was so limited and then to try to comfort him and give him all the love, security, and re-assurance we could.  The quiet of the news of Dad’s condition was over, but the quiet of his state had set in, and on January 5, 2011, Dad went on ahead.

Click here to hear "Taps."