A Changed Form

It’s difficult to know what to do or say or even think on a day like today; how does one mark a milestone that they wish didn’t have to be?

Today marks three years since my dad went on ahead.  Three years – that seems so unbelievable.  There has been so much pain, and mourning, and missing him in that time.  There has been a lot of change, too, some for the better and some, well, probably not so much. 

Here's what I am working on at this point: living - and thinking - so as not to allow cancer or sadness or grief to rob me or my family of anything more.  Because what I have learned in this past year is that it's so important to see the good in the moments, even when the grief makes things look blurry. What I have been working on since I sat in this same place a year ago is finding ways to make sure I don't miss the good, the happy, the important moments, even as much as I miss my dad.

It would be so easy to fall into the habit of viewing things as a misfortune, an unfairness, or even a disaster; one thing I've learned for sure since my dad died is that getting a foothold on perspective doesn't always come naturally - it often takes work and effort.  For me, at this point, there are times when the grief is still really thick, but I can tell that it has changed form. I think so often that Dad would be shocked and probably even more disappointed than touched that there are those of us who are still so much in mourning; I know he would want those of us he loved and cared for to be happy. That thought pushes me to try to do better, to be better, to do my best, just as my dad pushed me to do so when he was physically on this earth.

And so, through effort and dedication, I continue to be transformed as time marches on, and so does my grief. Instead of leading me as it has, the grief mostly seems to accompany me these days, still present but in a changed form.  I find myself sometimes having to reach to feel him around me lately, which brings about a new type of fear and a new form of heartbreak.  I am able to say that I am happy and grateful in the midst of it all, though, even though when the tears and anger come as they still sometimes do, I miss Life for him - and I miss him more than I ever thought possible.

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.

Father's Day 2013

This one's not the first Father's Day I've spent with my dad, but it's hitting me hard anyway.  There is so much stress and turmoil going on in my life these days related to my job that I don't feel like I am in "top shape" when it comes to being prepared to cope with the grief that still so often catches me by surprise, either with its timing or its intensity or both.

I looked through some old pictures today and found so many of my dad doing things he loved to do, whether it was sitting in a lawn chair in the sun reading the paper, running, sitting on the beach, or spending time with his family.  In all of them, he looks happy and healthy and as if he is perfectly content, and for that I am so grateful, except for a song that keep playing in my head:

CLICK HERE TO LISTEN TO THAT SONG ...

Today I found myself thinking about how on the day after my dad had died, I stood in the shower in the guest bathroom of my parents' house, crying and crying, feeling so much like my heart was breaking that I thought I needed to hold my hand over my chest to keep it together.  Never had I imagined - or even thought to imagine - that a day like that day was coming, or like the days like the ones I figured were still to come.  I had no idea how I was going to get through even that first day without my dad there physically with me, much less through the rest of my life.  I felt like I was falling down a well in slow motion, and I knew that at some point I would seriously need to reconsider my world view and, in essence, myself.

So many times, I've thought back to the last night that my dad was in the hospital and to the way that he insisted on having all the lights turned out and for Jennifer and me to be on either side of him as he tried and tried to sleep.  I remember how he reached out in the darkness to grab my hand and Jennifer's without even looking, and, recognizing the trust, the love, and the vulnerability in that move, I quietly started to cry there beside him in the dark; I was so grateful that he was so sure that we were right there with him.    

What I wouldn't give for just one more day with him.  I wouldn't even care what we did together; I just have so much to tell him and to talk to him about.  It's like I'm the one now reaching out into the dark to grab a hand to hold, and I'm so grateful that I have people who love me (and tolerate me) enough to serve that purpose, but it's still something that's so much tougher that I could have ever imagined.

Happy Father's Day to the man who was the perfect father for me.
I miss you and love you more than I can adequately express.