Thursday, September 27, 2012

Looking Back

Sometimes I think back to the time when my dad was sick and I wonder how we made it through what we did.  Getting through those days - and the months of grief since he has gone on ahead - have definitely been the toughest thing I've ever had to do.  It's seemed insurmountable at times, and sometimes it still does.  I've learned a lot along the way about coping and perspective and life in general, though, and hopefully those lessons will continue to carry me through the rough waters of the ocean of grief in the time to come.  

When I look back now at the things I did to get through the weeks after Dad's diagnosis, some of it's a blur, but other parts are as clear as if they'd just happened yesterday.  Some of the memories bring a smile to my face; others make me feel like I've been punched in the gut or start a stream of tears that usually lasts the rest of the day.

One thing I remember is how I preferred to be asked how my dad was instead of how I was; I could give concrete information about his status and what was going on medically with him.  As far as how I was doing - what could I say?  The possible responses were just too overwhelming and confusing and sad.  If pressed, usually I just said, "I'm hanging in there," as if there were another option to that.

Another thing etched in my memory from the time after my dad's diagnosis is the amount of advice we got from so many different sources.  I guess people tend to feel compelled to offer advice to cancer patients and their families - and to those who are grieving.  We heard all kinds of advice - spiritual counsel, tips for dealing with chemo and lack of sleep, and so many more medical pointers from our well-meaning friends and some extended family members.  Most of it was welcome, though I must say that on some days I just wasn't in the mood to get that kind of input because I was too busy/too stressed/too sleep-deprived/too whatever to be receptive to much of anything.  So many times what we were being told were things that didn't apply to my dad or to his type of cancer.  Some days I just wanted to cry and others I just felt like beating someone up and cussing, but, really, with all that needed to be done and with the positive front that we were putting on for Dad's sake (and each others'), that wasn't really an option.

One thing I realized in the midst of all of the suggestions about coping with cancer - and later with grief - though, is that, even though I don’t believe that anyone else can really truly understand how I feel or what I have gone through because of the uniqueness of every situation and every relationship, the fact that other people seem to want to understand and make the effort to reach out is almost as good. 

Even having recently been in the seat of the person getting all of that advice, though, when I hear about someone who is going through something like what my family did, it's really tough for me to avoid giving out my own brand of advice.  I'm not sure why that is: it's certainly not that I think I'm an expert on cancer, or chemo, or grief, or ANYTHING; maybe it's because it's human nature to want to do SOMETHING to help in a crisis, and that seems helpful, despite the fact that I know it wasn't always to us.  Maybe because what happened to us was so devastating and awful that I want to do anything I can that might possibly somehow spare someone else from going through the same things.  

Finding positive stories about people with the same kind of cancer that my dad had helped me in the early stages of his illness; obviously, I thought that if SOMEBODY out there had outlived the prognosis of that diagnosis, that meant my Superhero Dad could, and I felt empowered by others' stories of strength and bravery.  I was trying to figure out what their SECRET to survival was so that I could replicate those conditions for my dad.  Early on, I saw this quote by one of the most highly respected neuro-oncologists in the country, Dr. Keith Black:

If you've recently learned that you have a brain tumor, keep this in mind: YOU ARE A STATISTIC OF ONE.  No two tumors are alike.  No one else shares your genetic makeup and your unique brain structure.  This doesn't mean that you have to face this journey alone.  It means that as you explore treatment options and "success rates" of various procedures, you cannot assume that the statistics that you encounter apply to you.

I clung to that quote like a shipwreck survivor to a piece of driftwood; besides the occasional pang of complete denial when the message of "This isn't really happening" flashed through my mind, Hope that all of the terrible statistics and the devastating prognosis wouldn't apply to my dad was all that got my family through each day.  As Dr. Henry Friedman, one of the big-time neuro-oncologists that I talked to at the Brain Tumor Center at Duke, said, "Hope provides the patient and their family the strength to continue to battle no matter how unfavorable the odds may appear to be."

From my current vantage point, I know that, in fact, you almost have to have that sense of hope as you round each corner when you have no sense of certainty about where the road will lead after such a shattering diagnosis.  Hope is really all that keeps you afloat some of the time - well, that and the love you feel for the person who is sick.

Another thing I did to buoy our Hope is to reach out for support and information through some online communities like Cancer Compass.  There I connected with some longterm GBM survivors, one with whom I emailed back and forth to get recommendations about the specific treatment protocol he was on, and the other of whom called me on the phone with words of encouragement that I later passed on to my dad and others in the family.  The second survivor, a woman about my dad's age, had been diagnosed almost 20 years before (!!!) and, although she had had to make some adjustments to her lifestyle because of some of the side effects of the treatment (mostly memory issues from the radiation to her brain), she said she was living a good life.  When she said she had taken up bird watching as a hobby to fill her days since she'd had to retire about midway through the years of on-again, off-again treatment she'd endured, and I swallowed the lump in my throat as I tried to picture my dad sitting on his back porch, watching birds all day.  We will adjust as needed, I told myself - all part of the Whatever It Takes attitude that I was so sure would carry us through.  I desperately wanted my dad to be one of the ones who made it through to the other side of the time frame we'd been given; I knew that he could be a powerful motivator and a dynamic speaker, and so I let myself dream a little that he would one day be in a position to help by telling his success story to others with such a devastating diagnosis.

I became almost consumed with statistics while my dad was sick as I worked to convince myself and other around me that Dad would beat the odds.  I knew that there were so many variables that affect "outcome" (what a harsh clinical term that is), but it seemed like Dad had most of the good ones on his side (except for excision of 95% or more of the tumor).  I guess when someone you love gets a terminal diagnosis, almost everyone grasps onto the hope that their person will be one to beat the odds.  It's what we have to do; it's human nature, I guess, to think that fighting and whatever else you've got in you will be the deciding factor instead of cold hard Fate. 

While my dad was sick, I literally couldn't sit still, whether I was physically with him or not.   The sound of silence, to me, sounded like a ticking time bomb, and the voices in my head carried on an endless litany of things To DO, things I guess I believed might help my dad, things I supposed might give me some sort of control over a situation that was spinning out of control, sometimes in slow motion but most of the time at a mindblowingly rapid rate.  During times when I had to sit still like when Dad was trying to sleep, I played Words With Friends on my phone, I wrote in the Notebook, I wrote long emails to the other "inside" family members who were also involved in Dad's care, and I updated the Care Page.  I couldn't watch TV - I was way to consumed.  I read A LOT, anything and everything I could find about GBM.  I took copious notes and made long lists of ideas and questions, mostly related to long-term survival, things that I thought we'd need to know on down the road to improve Dad's quality of life. 

One odd thing that I did at a few points during that time was laugh; it really was the embodiment of the expression, "Sometimes, you just gotta laugh."  It seemed to be so closely related to crying, which I did a lot of then too, although that was more challenging because I didn't want Dad to ever see me cry.  The hurt and the uncertainty was so present in those weeks that it seemed crazy, almost laughably out of control.  It was so tempting to start to feel unlucky, but then Dad would say or do something that would remind me of just how lucky we were in that moment, how it could always be worse, and how the only thing that we could really control at all was our perspective.

“Life is 10% what happens to you and 90% how you react to it.”  ― Charles R. Swindoll

Sunday, September 23, 2012

One More Conversation

I recently read about how sometimes people who are going through the grief process think about what it would be like to have one more conversation with their loved one.

Thinking about that is complex for me, because, as far as I knew, my dad didn't think that he wasn’t going to survive his cancer diagnosis, and so the things that I'm guessing typically come up in those one-more-conversation type of exchanges weren't on the table for us to talk about when he was sick.  We didn't talk about end-of-life kinds of things during the ten weeks we had after his diagnosis; honestly, I don't know that any of us could have withstood that type of emotional wrenching, including my dad.  He knew that we loved him, and we knew that he loved us, and I think we thought there was still time to talk about everything else.

Part of me wonders now if we should have been straight up with him about what was going on medically; after all, he was an adult and maybe it was underestimating him or overprotecting him to keep that information from him.  He knew his diagnosis, but he didn't know the prognosis.  The bottom line, though, is that my family and I did what we truly believed was in Dad's best interests at the time, given what we knew and the resources we had.  We didn't LIE to him, but we did skirt around the truth about his prognosis and the severity of his illness on the few occasions he asked us about it, when he said things like "What if the chemo doesn't work?" and then we said things like, "It will, Dad! We just have to get through it."  He asked one of his doctors a few times about the usual prognosis of someone with his same diagnosis, and they told him the truth, but all of us, Dad included, discounted what they said because Dad wasn't "usual" - he was extraordinary.  Towards the end, he asked me a few questions like, "What's it like to die?" and "Do you think it’s cold in heaven?" (he hated to be cold), and I am so very glad that I answered him truthfully then.  Most of the things I said to him though, when I realized how very limited our time together was going to be were part of a one-sided conversation - when he couldn't talk back, and when I'm wasn't sure he heard me.  Looking back, I think it would have been so hard for us to say goodbye to him and then to have him say it back; the pain and sorrow that I see on his face when I picture this scene in my mind are heartbreaking, sending a stream of tears down my face, and that's when the vision is only in my imagination.  I think Dad might have viewed his own farewell message as quitting, and I am glad he was spared that, at least.  

So when I think about what our conversation would be like had he gotten an extra few minutes tacked on at the end of his life, it’s hard for me to picture anything other that what we did talk about when he was so sick.  Given that, I want to respond to the question of what would I say to him now - not as if he is still alive but as though he and I are able to communicate now, with him being wherever he is in the afterlife and with me being here on earth:

There are a few things that I want to be sure you know, and if I can be assured that you realize and understand these things it will help me to better deal with my grief:

I miss you so much, every day.  You had such a big impact on my life and on making me into the person I am today, and the things you taught me and the lessons I learned as a result of having you for a dad are carrying forwards, still affecting me every day.  So much bigger than that, though, was your impact on the hundreds of other people you knew and even on the thousands of other people you came into contact with over the course of your life.  What you left all of us with – and all of the people with whom WE will come into contact with in the time to come – is your perspective, your view on kindness, and your joy and gratitude in all kinds of situations.  Because of you, I know that I am lucky, no matter what is happening around me.  Because of you, I know that I can decide to be happy, if I choose.  And because of you, I know that family comes first but that every person is important and that being kind and giving to others is a privilege, not a duty.   I wish you could realize how many people admired and loved you; I think while you were sick that you might have gotten confused on just how many friends you had because we discouraged people from visiting you then because we were so worried about you catching their germs.  I’m sorry that we didn’t find a way for you to see how cherished you were by so many.  Finally, I want you to know that we will be forever grateful to you for the way you fought so hard to hang in there through so much over those last ten weeks, I want you to understand how we are so appreciative of every bit of light you brought to us over the years, and I want you to know that I will think about you and try to make you proud every single day, for the rest of my life.