Chapter One, Part 1: Foreshadowing

Isn’t it odd the way that, without a crisis, foreshadowing is just another event that occurs, leading to nothing, with no hidden agenda or meaning.  I guess that’s how life works, though: we go along about our business, day after day, and then one day something big happens and things change.  Things are changed, sometimes forever.  And when the sting of it all eases up even the slightest bit, we wonder if we could have somehow altered the outcome or even if we could have seen whatever happened coming. 

One thing I’ve learned over the course of the last few years is that even hindsight isn’t always 20/20.  Later, when I thought back to the day when my family and I climbed the rope course at the Adirondack Extreme Adventure Course, it did seem like foreshadowing, because it was the first time I’d ever felt like I needed to protect my dad.  It was also, as it turned out, the last time I ever saw him when he wasn’t sick.

For many years, it had been the tradition of my parents, my siblings, and I and our families to get together for a family vacation during the month of July.  The exact dates and the location and even the activities we did on each trip varied each year, but we always made sure our time together included time for hanging out and catching up, one of ways we stayed connected despite the geography in between where each of us lived.  Our gathering place in the summer of 2010 was Lake George in upstate New York. 

One of the activities we did during that time was to go to the Adirondack Extreme Adventure Course, an intense rope course composed of stunts involving zip-lines, Tarzan swings, hanging nets, wobbly bridges, and suspended logs.  Through an Internet search of things to do in the area, I had found information about the park and had encouraged others in the family to sign up.  Unfortunately, I didn't pay much attention to the term "extreme" in the title beforehand. I also didn't realize just how high in the trees the majority of the course would be situated or how long the course was (we later found out it usually takes 3-4 hours to complete the course).  

When we got to the park, we were given instructions and a quick safety lesson, and then we lined up and started climbing.  I knew Dad was afraid of heights, but, as I said, I didn't think the course was going to be roughly twenty feet off the ground.  I was pretty nervous while we were on the course, both for my own sake and because of a few other people in the family whom I knew were struggling for various reasons, including Dad.  In the many athletic pursuits in which I had participated over the years with my dad, I had never felt such a sense of protectiveness towards him; he was the one who was typically having to assist me.  Dad was completely capable of managing the physical demands of the course - he was already in training for the Ironman triathlon at that point - but he was anxious about the distance to the ground.  He wasn't about to quit or even to admit that he was scared, though; that was for sure.  As always, Dad stuck with it and finished, laughing and cutting up along the way.

No one could have possibly predicted what would be going in the months ahead – Dad’s diagnosis, his struggles with the many challenges that his illness brought, or his death.  While Dad was sick, I often thought back to the time when I was watching him on the Adirondack course that day.  I could clearly remember feeling like I needed to safeguard him, to shield him or "spot him" on the bridges and ropes, maybe not as much from what was required of him along the course but more from his apprehensiveness; I didn't want him to be scared.  It was a weird kind of foreshadowing for the way we would have to guard and encourage him though the fear and instability during his fight with cancer.  

At the end of that trip to upstate New York, my immediate family ended up being stuck at the airport in Albany because of a delayed flight due to thunderstorms across the country; my parents made it out on their flight on time.  After they had gotten home, Dad texted me to check on us and commiserated with me about the inconvenience of the lateness of our adjusted schedule.  "I hope you make it home ok," he texted when I told him that our plane had finally been cleared for take off, the second-to-last time he would text me, ever.  And, only five months later, I said goodbye to my dad for the very last time, and, in the early hours of the morning later that night, I laid my head down on the pillow to try to sleep and found myself crying so hard that tears threatened to fill my ears.  I tried to stop but couldn't, and then I squeezed my eyes shut and felt that same message flash from me to my dad:  "I hope you make it home ok," I thought between sobs, and then I added,  "I miss you, I can't believe this whole thing happened, and I don't think I can make it without you" - thoughts that would run through my head at least a thousand times in the days and months to come.

Waiting for Disaster

So much has been written about the stages of grief over the years.  It’s interesting to me, and I have found some comfort reading about generic Grief because the information sometimes serves at times to let me know what may be coming down the pike emotionally for me and at other times to reassure me that what I am feeling/thinking/doing is Normal (whatever Normal is). 

One of the many things that I did not know about before we were in the thick of things ourselves after my dad’s illness was Anticipatory Grief.  Somewhat ironically, I actually learned about it after we’d been launched into full-blown Grief after my dad’s death, but even in that context I was able to recognize the accuracy of what I was reading about it in terms of what my family went through while my dad was sick.

Something related to Grief that I haven’t heard anything about, though, is the watchdog mentality of a person who is caring for someone with a catastrophic illness, an emotional state that can even extend into the time period after the death of their loved one.  It’s an odd habit that can easily find footing, morphing into almost an addiction of sorts, the waiting for something bad to happen, the unwelcome sense of dread and fear, the impending sense of doom. That Waiting for Disaster kind of thinking makes sense when a person is caring for someone who is critically ill; what doesn’t add up, though, is when that feeling lasts even when the sick person isn’t around to need help anymore.

I don't think there's a term for that extended expectation of catastrophe; perhaps Foredoom is a good way to label it. From talking to so many people who have gone through similar situations like my family did after my dad's diagnosis, I can tell you that it's real - and that it's not that uncommon.

At times, when that Foredoom takes hold, it can feel almost shocking when things go well, and what’s even stranger than that is the way it feels disconcerting, maybe even reckless, to try to drop the Worst-Case Scenario kind of thinking, the sleeping with one eye open, the constant monitoring of the cell phone just in case someone needs me for something critical.  The thing about it that hooks us, I think, while we are caregivers in a critical situation, is the feeling of being needed, perhaps even in a life-or-death type of way, and of feeling like we have some control over things that without us, we imagine, would go spinning out of control. 

When that caregiver role is gone for us, it’s a loss that adds to the chaos, the directionlessness, and the grief of the loss of our loved one.  The sting of the realization that we did our best and still weren’t able to FIX things weighs so heavily on us and makes us wonder “What next?”  It makes us question whom we are, what we are supposed to be doing, and how we are going to cope with the changes that have been forced upon us.

Sometimes, I’m learning, that sense of vigilance remains, long after it makes sense.  Maybe we've become so accustomed to the noise that we don't know how to cope with the quiet. Maybe it’s our psyche’s way of punishing ourselves for not being able to save the person we loved - or for living still when he isn’t.  Maybe it’s a result of clinging on to the idea that we have any control over anything in life, even long after we should have realized how crazy and misdirected that thought is.  It’s like being “on call” was the thing that gave us direction and meaning, and, now that that’s gone, those of us still here are left adrift, unable to relax or unwind but so, so exhausted and confused and disoriented.

Worrying

For as many things as I like to think that I got from my dad, whether by nature or by nurture, we had one core difference: I am a worrier and, simply put, he wasn’t.

I, like others with tendencies similar to mine, call it planning, organizing, taking care of the details.  I consider it a necessary part of life and, truth be told, I do it pretty often; his philosophy was that whether or not one worries is a personal choice.  He and I had many conversations about this topic over the years, including several during the weeks that he was sick, and he told me many times that from his perspective there were alternatives to worrying, like “just doing it,” or “going with the flow.”  He was a great list-maker, often leaving sticky notes and legal pad pages of reminders for himself around the house, on his desk at work, and even in his car.  That, he said, was a way to get worry off his mind.

That stuff doesn't work for me, though.  I don't feel like it's my choice to worry or not to worry, and making lists (as I do as often as my dad did) lessens the worry but doesn't turn it off. 

This is what a supreme worrier I am: I often read books while thinking about trying not to leave a mark on the book that will affect its condition.  I try my best not to get smudges or water marks or creases on the pages as I read.  My dad, in contrast, concentrated on thoroughly enjoying a book as he read through its pages.  What a joy I have found it to be to look back through the books he read and to see the marks he left behind, the crumpled pages, the sticky notes, the underlined and notated passages, and the dog-eared corners.  What pleasure it brings me to look at those things and to know that my eyes are where his once were and that he so completely basked in the moment when he was there, on that page in that book.  It’s like seeing the scrawled “I was here” written somewhere, and it makes me smile and warms my heart.  It also sometimes makes me think again about the benefits of worrying less, or, as my dad would say, choosing to do something besides worrying. 

Maybe that’s why the anxiety that Dad experienced during his illness, especially during the last two weeks of his life, still haunts me so much.  It was so uncharacteristic of him to be worried, and the rest of my family and I felt so powerless in our ability to quiet his fears and quell his distress.  More than anything during his last days on this earth, I wanted to take away that worry, which I knew would ease his pain. I think back to his last night in the hospital and to the next two nights after that when I took a turn sitting up with him as he struggled to sleep and as we worked to get control of the panic and the pain, and my heart hurts to remember the worry etched in his face.  Sometimes the medicine would help, but more often it was the presence of someone he trusted completely that seemed to help ease his mind.

I remember sitting beside his hospital bed in the semi-darkness of my parents’ den after he’d come home and listening to him worry aloud about things that he could not control.  I tried telling him not to worry, I tried to let him know that we only needed to focus on the really important things, and I tried to convince him that others of us would take care of the things that seemed to be on his mental to-do list, but that just seemed to agitate him more.  Finally, I waited for him to pause to take a breath, and I said, “It’s going to be okay, Dad; I hope you can choose not to worry so much,” and he turned toward the sound of my voice in the darkness as if those words were my arms going around him.  A minute later, the talking stopped and his breathing slowed into the rhythmic pattern of sleep.  I stood up to cover him with an extra blanket and then tucked in beside him, half on the couch and half on his bed, with my head on his shoulder, thinking that maybe I could absorb the burden of the rest of his worries during the remainder of the night.

Room for Improvement

There are several things that have stuck with me from during the time that my dad was sick, things that I perceive as mistakes and missteps that were made in the care and treatment of my dad by others during his illness.

One of the main ones comes from what was done - or rather, what wasn't done - by his oncologist in the last couple of weeks of my dad's life.  

I sometimes read a blog called People I Want To Punch in the Throat.  It's usually entertaining and sometimes even thought-provoking.  Every time I look at the title of it, though, I am tempted to make up a list of my own of people whom I wouldn't mind punching.  Towards the top of that list would go the name of my dad's former oncologist.  

I recently read an article about the subject of doctors who desert patients who are in the end-stages of their disease.  This article made me think again about my dad's oncologist, whom, as I've said in the past, we really liked in the beginning.  So much so that our fondness for and our trust in him, along with the urgency of procuring treatment for the cancer which we understood from Day One to be very aggressive and the logistical challenges in getting Dad in to see other doctors, resulted in our not consulting with other oncologists in the area.  It was a one-and-done scenario.  Our second opinion came from the nationally recognized team of neuro-oncologists at Duke which stemmed from a referral from Dad's hometown oncologist.  Since my dad's death, I've wondered so many times whether I should have done something else to make it possible for other oncologists in the city where my parents lived to give their opinion on my dad's case - but that's fodder for discussion for another time.

We thought we were right in choosing the guy we chose to provide medical care for my dad.  What's really messed up is that, even in a critical situation like my dad's that should have been recognized and treated as such every step of the way, the inconsistent availability of even the nurse in the practice when we had questions or concerns, the slow call-backs, the wait-your-turn kind of attitude that was so clearly conveyed to us throughout the first eight weeks of Dad's illness was something we felt we just had to take.  Never did I question the service or the care being provided by anyone at the oncology group, even when I realized that they could have done some things better - more efficiently, more compassionately, and with more effort to help my dad.  I just took whatever they were giving out - even though it definitely affected my dad's quality of life.  My family and I were struggling more than I can even begin to explain with caring for my dad and dealing with the series of blows we were being dealt, and I guess I didn't have it in me to buck the system.  Still, though, from this vantage point, neither the way my dad was treated nor my reaction to the quality of the service provided to my dad sits right with me.  

Things were going ok as far as I could tell with our interactions with the oncologist, though, until a few days into my dad's second hospitalization.  As much of a warrior as I can be sometimes when people I love need my help, for some reason I didn't see how wrong it was for Dad's doctor to take several days off work for Christmas and then again a week later, as my dad was entering hospice, for New Year's.  I get that the man wanted to spend some quality time over the holidays with his family - but DAMMIT didn't he see that my family wanted some quality time too?  I have thought long and hard about it, but I still cannot understand how the guy just punched out for 85 hours (yep, I counted) TWICE less than a week apart, not even CALLING to check in on us at all.  I guess I thought that was ok - I didn't say anything about it then - but my thinking wasn't right then.  Now I know that it wasn't ok at all.

I understand that, as the article referenced above points out, sometimes an oncologist distances himself from a patient who is in the end stages of disease to protect himself emotionally. There is no doubt the job of an oncologist is likely to be depressing at times ... but that's what they have signed up for.  I consider a patient's relationship with his oncologist to be worth sticking out through the good times and the bad; I don't think there is any valid justification for an oncologist to let himself off the case (and off the hook) just because the treatment isn't working.  As Dr. Moynihan states in the article, “No physician should ever say there’s nothing more I can do. There’s always something more we can do for the patient — if only to be there and listen to their stories and deal with their pain and suffering.”

And to the point made in the article by Dr. Meier of Mount Sinai: Yes, it is failing a patient who has been under the care of a doctor when that doctor chooses to no longer be involved with the care of the patient at the end, especially when, as in the case with my dad, the oncologist plainly promises that he will continue to be involved and will call in a few days to check in and then doesn't.   

To be clear, I am not alleging any malpractice or a breach in the medical care provided to my dad by the oncologist or his practice; I am, however, saying that there was definite room for improvement, and the fact of the matter is that my dad and my family were hurt in other ways by the practices of and the choices made by the oncologist.

The oncologist in the article, who has written his own account of the difficulties of treating a dying patient, said he received no training at all in medical school about "how to interact with a patient" who had reached the end of oncological treatment. I believe this to be the case in most med school programs, and I think it's outrageous.  Here's what I know and what I think all medical people should know: some of the most impactful care that a physician or other health care professional can give to a patient and his family sometimes comes from something other than medicine.


I think I'm going to write a letter to my dad's former oncologist.  It obviously won't change what has happened, but maybe it will impact the way he treats other patients and their families in the future.

A New Perspective on Hope

I didn’t think much about the concept of Hope during the ten weeks my dad was sick; rather, my family and I clung to it like a lifeline, as if it was the medicine that we needed to make it through each day and each night.  After he died, whenever I thought about Hope and the way we had had so much of it during those tumultuous weeks, I felt like a kid who’d been lured into a kidnapper’s vehicle through promises of puppies and candy.  I felt so incredibly disheartened and disappointed in myself for having had such complete belief that my dad (and thus my family) was going to beat the odds. Afterwards, after the rug had been pulled out from under us, I felt like I should have at least suspected that it might have been about to happen.

Here I am three years from the month in which my dad was diagnosed, still shocked and confused that the whole thing happened.  One thing that has changed for me lately though is my view on Hope:

A child I know was recently diagnosed with cancer.  His mom, a good friend of mine, and I have been talking about the injustice of it all, her fresh shock and fury easily unearthing some of mine.  I have felt especially at a loss as to what to say to her since her son’s diagnosis, mainly because I know how empty certain standard platitudes can sound to someone who is on the inside of the tragedy and who is struggling to survive in the midst of such unbelievable turmoil.  “Hang in there”??  What else would she do?  “Be strong"??  As in, don’t cry – or don’t run away?  “Let me know what you need”??  Maybe she can work on making a list and then call all of us to delegate in her “spare” time.  And then there’s the thing that I thought to be the worst form of banality when my dad was sick: “I know just what you’re going through.”  I’ve said it before, and I’ll say it again: that statement will never be true for any two people, even if those individuals are in the same family, are taking care of someone with the same type of cancer, or have some other type of parallel.  It’s always different.  

I did come across a quote that I thought might be something to consider as other words continued to fail me, though:

I came across a story about a child with cancer that was posted on a blog a few weeks ago with respect to Childhood Cancer Awareness Month in September, and some of the words from that story stuck with me: every family battling cancer needs hope.  I like the way the author used the term "family" in that statement as the battle is fought by entire families, and the truth of her words really hit home for me.  People need Hope, especially in the midst of the most difficult things they must endure, like the catastrophic illness of a loved one. That Hope can be for varying things depending on the circumstances - Hope for a cure, for comfort over pain, for more time together, for a solid treatment plan, for a trustworthy medical team, whatever is chosen by each person and by each family.  Sometimes that Hope is nothing more than the knot in the end of the rope that we've tied in desperation and to which we cling so fiercely.  Hope has such value, though, as it is what keeps us from giving in or giving up; it's not that we're heroic or tough or even smart and that's why we keep going in the midst of tragedy - it's that we have to believe so that we are able to persevere, to make it to the next corner, where there just may be something that will change the course of things.  It's stubbornness, it's strategy for survival, and it's love; it's what we do because it's sometimes all that we can do.

In that light, Hope seems brilliant instead of foolish to me, and, for that change in perspective, I am grateful.