The Fuel of Hope

I recently came across a video clip of an interview with Dr. Henry Friedman, the Head Honcho at the Preston Robert Tisch Brain Tumor Center at Duke University.  Watching it brought back memories of the day about a month after my dad was diagnosed, the afternoon on which this same man called me on my cell phone to say that the team at Duke had received Dad's paperwork and had approved him to come in to their clinic for a consultation.

Knowing the outcome as I do now, it feels odd to think back on the day when that call came in with what felt like the best news of my life.  I vividly remember standing in front of my desk at work, hearing my cell phone ringing, and then seeing the North Carolina area code come through on the screen of my phone.  Like a drowning person grasping for a life preserver, I hit the button to accept the phone call and said, “Hello?”  A few of my coworkers, each of whom knew that I had been anxiously waiting on that call, stopped what they were doing and stood motionless, watching my face as I listened as Dr. Friedman responded to my basic greeting by launching into a rapid-fire monologue about how we needed to get my dad in to see his team at the clinic at Duke.  I felt like it was the voice of God speaking to me; I felt like hearing that Dad had been accepted into what we’d been told was the best program for his type of brain cancer in the world was a sign that Dad was going to be ok.  The stream of words coming through the phone line sounded like a pep rally of the highest importance: “We have seen great success with the treatment for GBM that we’ve been doing in this clinical trial,” he said, and for the first time since Dad’s diagnosis I felt Hope. Friedman offered me an appointment for my dad and of course I gratefully accepted, with tears streaming down my face as I stood in the middle of my office.  I thanked him and then we said goodbye; I hung up the phone and turned around to face my coworkers, who broke out into a round of applause.  I felt like I had won the lottery.

Watching this clip, listening to the same voice talk about the horror of brain cancer coupled with the renegade Hope of his treatment plan, I feel such a mixture of emotions.  Although I spent a lot of time after my dad’s death feeling very angry that the Hope that we’d been given hadn’t panned out, I am grateful now that Dad and the rest of us were able to have that Hope for a period of time, because the thing from the video clip with which I don’t agree is the idea that the worst thing one can hear is the word Cancer.  I know now, as do others who have gone through similar situations, that the hardest thing is when the doctors don’t know what to do, when the treatments don’t work, when the Hope has to change to things like comfort and peace - and when even those things seem like a far-reach.  

We didn't actually meet with Dr. Friedman once we got to Duke; we met with some of the neuro-oncologists and other staff members there that he had trained and talked to them about his latest protocol for treatment of GBM.  We felt the support in the fight against the insurance companies as discussed in this video, and we appreciated that and the other resources we were given while we were there.  

Of course I wish that my dad could have had a "good outcome." Of course I wish that my dad could have been one of the people in this video talking about long-term survival.  Of course I wish that he could have been one of Dr. Friedman's examples of how things could go right.  But, failing that, from this vantage point I am grateful for the Hope that we were handed by this guy and his team and for the fuel that it gave us, if only for a short while.

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.

Circling the Drain

One of the many things that caught me off-guard about the grief process is how completely exhausting it is.  At first, I thought my fatigue was the culmination of the sleeplessness that came from caring for a critically ill person who, as in our case, almost never slept.  My mom, my sisters, and I were so far in the red on sleep it would have been understandable if that alone caused us to sleep for a week solid after my dad went on ahead.

But in researching and in learning first-hand about the grief process, I've found that grief itself is a cause of exhaustion, both physical and emotional.  Grief is hard work, whether we realize it or not; it's taxing in so many ways and on so many levels, even while we are sleeping or doing routine things like showering or driving to work.  

Probably the most physically taxing thing I've ever done in my life, besides coping with grief, has been running a marathon. Each time I've done that, I've trained for months in advance, I've read about what I should be doing to make it to the finish line, I've put effort into visualizing myself completing the event, and I've been in very good condition going into the race.  None of those things were true going into my dad's illness or his death - or being plunged into the quicksand of grief that followed.  In fact, another thing I've realized that actually contributes to the fatigue and the sense of overwhelm is that, in grief, there is no finish line.  The emotions that come with grief may seem as if they are easier to take or even fading over time, but what's actually happening is that the person who is grieving is becoming more adept at tolerating the assault as they become more seasoned or even more hardened.  

For the first six months or so after my dad died, I tried my damnedest to dream about him; I felt (and still feel) such a desperate need to have any kind of contact with him.  I had a few dreams about him, which I wrote about here and here, but then I went quite awhile with nothing.  My conjuring powers were apparently shot, at least for that time period. What ended up happening after that instead was that I started dreaming that someone was trying to kill me, obviously a very disturbing and terrifying experience, one that easily reminded me - not so coincidentally - of how I felt in Real Life starting the second my dad got sick.

I've heard it said that dreams are often the mind's way of helping us to work through our troubles; I'm not sure that applies to this situation, though: I wanted to lose the feelings of powerlessness and terror and injustice, not to experience them again and again as I did each time a dream like that came to me.  I sometimes wonder if my brain was trying to desensitize me to that feeling - because, as I've learned from what happened with my dad - that's life, it's going to happen, and no amount of training or learning or otherwise preparing can actually help when things happen that cause the grief to bear down on us; I think the best we can do is to accept that it's going to happen and to have enough hope and faith that we will get through it, somehow.  

The Smell of Colors

I once worked with a child who said that he could smell colors; I was intrigued by his claim and asked him to tell me more about it – how he’d first noticed it (“I just did,” he said) and what each color smelled like to him (interestingly, I thought, white smelled like flowers, whereas I thought it would smell like the “fresh cotton” scent of an air freshener).  Some of the other people who worked with this child seemed to think his behavior was bizarre, but I thought it was fascinating.

Obviously I can’t tell other people how a certain color smells, but what I can do is to describe what certain emotions sound like. 

On the first night after we’d gotten to Durham when we took my dad to the Brain Tumor Clinic at Duke, my sister Jennifer and I lied down to try to sleep on the pull-out couch in the little room that adjoined with the bedroom where my parents were. Dad, who was both exhausted and wound up from the very long, tedious drive there that day and somewhat disoriented about what was going to happen the following day, had finally gotten to sleep, and Jennifer and I had only then realized that all of the pillows and blankets were in the closet of the bedroom.  We didn’t dare go in there for fear of waking Dad up.  We lay there on the thin, spring-violated mattress with a threadbare sheet over us, without pillows for our heads, and suddenly we both started laughing.  Punch-drunk is what I guess it’s called: laughing when essentially nothing is funny - out of fatigue so thick we could hardly think – and stress and terror and so many more things that felt so much more powerful than we were at that moment in time.  We had to keep shushing each other until we finally giggled ourselves to sleep that night, with the laughter somehow helping us to steel ourselves for the next day, which was both Jennifer’s birthday and the first day Dad got chemo.

The metaphor that comes to mind most often when I think about my emotional state during the time Dad was sick is a glass that’s completely full: whenever anything additional was added to what was already in there, the overflow was out of my control, and I was completely incapable of handling it.  One of the many things that happened during those ten weeks that threatened to put me over the edge was the car trouble that mysteriously started happening just after Dad’s diagnosis.  Just days after his surgery, I remember hearing a faint buzzing noise coming from under the car hood after I'd parked and taken the key out of the ignition.  My husband checked it out and said that it seemed like the battery was still running, despite the fact that the car wasn’t.  He took it to the repair shop, but they couldn’t get the problem to reoccur while it was there.  It didn’t happen again for about a week; the next time I heard the buzzing noise, I was in the parking lot at the rehab hospital, about to go inside and take an overnight shift with Dad. 

I was torn; I needed the car because I had to drive back home to go to work the next day, but I needed to be with Dad.  In a move that seems totally uncharacteristic for me, I threw caution not just to the wind but completely into outer space and left the car – and the buzzing – in the parking lot and went into the hospital.  Since my dad’s diagnosis, my priorities had never been clearer.

The next day when I went outside to the parking lot after Mom had come back to be with Dad, I unlocked my car door and tried to start the engine.  Nothing.  The battery was obviously dead.  Luckily for me, my aunt, who was at the hospital too, offered to help; we called AAA and they sent a repair guy to check it out.  He replaced the battery, and, when the same incessant buzzing sound started up again as soon as he connected the new one, he told me to get the problem checked out to be sure it wouldn’t happen again.  I took the car straight to the dealership near the hospital, but they couldn’t find a problem; they said they’d disconnected and then reconnected the battery and the buzzing noise had stopped. 

Looking back and remembering the amount of stress I was under at the time, I’m a little surprised that I didn’t just tell the people at the dealership to keep the old car and bring out a new one for me; having to deal with car trouble on top of everything else was definitely an overflow of the stress with which I was equipped to cope.  Instead, though, I drove the three hours home and told my husband what had happened (again), and he showed me how to disconnect the battery under my hood and gave me a yellow-handled wrench to keep in the side pocket of my car door, just in case. 

Just in case was a language in which I was fluent by that time.  I’ve always felt the need to have plans and back-up plans, and, since Dad had gotten sick and had begun to need around-the-clock care, I knew that careful strategies and consideration of all the variables was essential to my entire family.  Having to tote a yellow-handled wrench around did not at all – pun intended – put a wrench in the plans we had laid.

A couple of days later I drove back to where my parents lived and parked my car in front of their house.  I heard the buzzing again after I’d turned off the engine, and I inexpertly used the wrench to disconnect the battery. I became much smoother at the process over the next couple of weeks, even performing the procedure later in snow and in the dark.  On the day when I was driving home from my parents’ house on icy roads and had to turn back due to the route being impassable, I pulled up in my parents’ driveway, stepped out of the car, and heard the buzzing again.  In the snow and ice, I hurriedly used the wrench to disconnect the battery and then closed the hood of the car and went inside, wet from the snow and shaken from the precariousness of the road conditions.  Dad, who was sitting in his red leather recliner chair in the den, looked up from reading the newspaper when I walked in and noticed the wrench that I’d forgotten to put back in the car in my hand.  When he asked and then I explained why I’d needed the tool, he laughed and said, “Well, if the whole OT thing doesn’t work out for you, I guess you could always be a mechanic.”

When Dad was in the hospital the last time and my family was having to deal with getting to and from the hospital on icy roads at all hours of the day and night, I got so adept at disconnecting and reconnecting the battery that I could do it in the hospital garage in under ten seconds each time.  I ignored the stares of the people around me in the garage and declined the help of the security guard who saw me with the yellow-handled wrench and my car hood propped open.  The battery hookup/unhook became part of my commute routine, just like defrosting the windows and driving through Sonic on the way to the hospital to get Dad a Diet Coke.

I still sometimes think about the boy who said he could identify colors by their smell, and it makes me think that maybe part of the reason I made it through the difficulty of the time when my dad was sick and since then is that I somehow recognized that, because my family is lucky, we had the sound of laughter to remind us of the love and hope and devotion we shared even through the most challenging times.