Thursday, August 8, 2013

Every Day is a Bonus


I’ve met a lot of people with cancer since my own induction into the NIHF (Nasty Illness Hall of Fame).  It’s like suddenly noticing that everyone is driving the same model of car you just bought. Sometimes you spot other survivors because of the awesome hairdo (i.e. lack thereof) or the PICC / port. Sometimes there’s just that vibe and you find yourself striking up a conversation with a perfect stranger as if they’re old friends. Those conversations aren’t at all uncommon and typically the people leave you feeling buoyed and encouraged from their positive outlook. After all, we’re all survivors and it takes a certain je ne sais quoi to keep breathing when the chemicals may be messing with your lungs.
 
 
Sometimes that positive attitude isn’t enough and the cancer takes a few fellow soldiers out. I’ve met two such people who were processing the news that their bodies weren’t responding to treatment any longer and I was on the other side of a curtain when a social worker was discussing palliative care options with someone who had just received that news. Just like the cancer diagnosis itself, just hearing the news of someone else’s impending demise stops you in your tracks.  It’s not so much a ‘there but for the grace of God go I’ sort of thing as much as it is reality when you’re battling cancer at all.  I don’t feel sick, but I know if I do nothing, I’ll be having that same conversation with someone with a practiced sad but efficient countenance. My doctor said as much on Monday. It’s powerfully sobering…and just like a good alcohol buzz, coffee doesn’t make this go away either, but it is, to be sure, the ultimate buzz kill!
I started writing this blog for two main reasons. Naturally, it’s a way of ‘controlling the message’ and letting everyone know what’s going on with a rather long-term, complicated condition I’m working through. The details are many and easily misinterpreted, so I try to use this forum to keep everyone who cares in the loop at the same time instead of saying the same thing over and again. That really gets emotionally taxing. But really, I write for me. Writing has always been a catharsis, a way of expressing how I feel and as a way of preserving some modicum of sanity in a situation where I feel like I’m held hostage to a situation that I did nothing to bring on and can do nothing to ameliorate. Admittedly, in the process of putting information out there, I tend to be a bit self-deprecating and flippant, but underneath it all, I can be one scared puppy on occasion.
Now, I wouldn’t try to start reading between the lines and wondering if I’m OK because that just opens up a new can of worms and if you’ve ever played with worms, you know how messy that can get! So, let me spare you the psychoanalysis and just come out and say that I’m OK. I will also say that while I accepted academically, a long time ago that I have cancer and am going to fight this son-of-a-bitch until one of us is the decisive victor, I struggle with the reality of it all. I have to trust a panel of test results that unequivocally, pathologically, and painfully say that I have acute myeloid leukemia even though I really have had no symptoms to speak of. Yet the facts point to a certain, untimely demise had I continued to live as if nothing were wrong. Hey, denial will only get you so far. Damn! So, I try to face it head on…but how do you process something you couldn’t see, feel, taste, hear, or smell? Highly experienced doctors and nurses all told me that the amount of blast cells in my marrow should have debilitated me, yet I was leading a very full life: working a job I really like, skiing black diamond slopes and hitting the gym every night. It didn’t make sense. And while I still can’t reconcile it at all, I’m not letting the lack of tangible evidence dictate my course. After all, my attending physician told me that my latest marrow biopsy was clear of cancer, but had something in it that indicated that left untreated, the leukemia would return and it would possibly be unresponsive to additional rounds of chemo.
The transplant is something I need in order to survive.
It’s easy to be a bit glib about being a survivor when there isn’t any discomfort, when there isn’t a tumor to be surgically excised or radiated, but it doesn’t change one iota the fact that without definitive, aggressive treatment, survival becomes increasingly unlikely. During the wee hours of the night, during my early hours in the morning before I’m around anyone, during the time I’m exercising, and during my conversations with other patients in the ward, I find myself pondering my mortality and profoundly grateful for each additional day. As my grandpa used to say, “Each day is a bonus.” He obviously said that as a way of recognizing his own morality and that his life was coming to a close. From everything I’ve been told and from everyone I’ve spoken with, it’s rather unlikely that my time is drawing nigh, as it were, but I still find myself with that same attitude: whether I have a few months or a few decades remaining in my life, every day is a bonus.
 
I don’t know when it was over the course of the past six months since my diagnosis that I found some peace with my mortality, with the possibility that I might not survive, but I did. There’s no fear or regret, but certainly a desire for more time to make a difference somewhere, somehow, in the lives of someone else perhaps – lots of someone elses. I’m sure that’s why I enjoy the charity bicycle ride events so much. But if, on the outside chance, that’s doesn’t happen, I’ll know I lived a wonderful and rich life. I’ve realized my childhood dream of being a pilot, I saw my children come into their own adulthood, and I knew what it was to “love and be loved in return.” I could list off a number of accomplishments, places I’ve seen, fun and off-the-wall things I got to do, but in the end, what matters most is the relationships I’ve had over the course of my life. Some of them, I got right and others were, shall we say, teachable moments, for this incorrigible big kid.
And maybe it’s now that I face death that I can say with some degree of certainty that I can live even more fully, both in the moment and out a few years. I’ll still look forward to learning from my mistakes, but the fact that I’m making them will reinforce that I’m alive and moving forward. No, I’m far from ready to be tossing in the towel, but I do want to make good on a vow I made to myself when I walked through my last big crisis. As I tried to reinvent myself, I came to the unavoidable conclusion that the woulda coulda shoulda game gets me nowhere but an invitation to other people’s pity parties and I tell you, I’m not going nor am I hosting one for myself. I vowed that I would live my life without regrets, that I would tell those I loved how I felt about them and that I would be happy in spite of my circumstances. I think I’ve done pretty well with that resolution and it has stood me well. That is, by the way, one of the reasons I end my blog posts the way I do. Regardless of how long I live, I want the last words you hear from me to be those of well wishes and kindness.
I don’t need to tell you that this story isn’t over. I have learned a lot of painful life lessons even in the past five months and those lessons will be refined a bit more over the immediate future as I walk through the proverbial valley of the shadow of death. I’ll get to see some pain and suffering, some tears, and some days that will just plain suck just because, but there are things left for me to do. I don’t have the faintest idea what they are, but I know I’m going to be busy for years to come.
I hope you’ll continue to stay alongside me for the ride. It’s going to be exciting, a little awkward and hard to watch at times, but exciting nonetheless. So be well, stay strong for me, and know that there is much love sent your way…every day.
Today's music comes from the opening of the movie Moulin Rouge, a variation of Nat King Cole's Nature Boy because "...the greatest thing you'll ever learn is to love and be loved in return."

There was a boy
A very strange, enchanted boy
They say he wandered very far, very far
Over land and sea

A little shy
And sad of eye
But very wise
Was he

And then one day
The magic day he passed my way
And while we spoke of many things
Fools and kings
This he said to me

"The greatest thing
You'll ever learn
Is just to love
And be loved
In return."