Wednesday, July 21, 2010

The Last Few Months

Very early on in this process, I was at the National Cancer Institute in Bethesda, MD, undergoing what seemed like an interminable number of procedures to qualify me for their vaccine trial, which has, in the months since, seen good results in a number of delicate cases. Anyway, while I was there, one of the doctors, in talking to me and my family about my road to recovery, should it even exist, said, "it's not a sprint, it's a marathon."

Over the past few months, those words have come and gone countless times through my mind. The thought usually evokes one of two responses, as I will explain. In either case, I expect to somehow reach the end of my life, preferably an end of old age. So, on the one hand, when I reach the end of my life as an old man, I think of this experience as having been a marathon rather than a sprint. And I can't help but feel uneasy about the prospect of someday reaching the waning years of my life and thinking to myself, "I knew it was going to be a marathon, but I made it!"

I know I've said it before, but running still feels to me like a form of punishment, instilled by years of angry coaches telling me to "get on the line!" followed by the number of seconds that would appear and then vanish from the game clock on the wall, before which the team had to finish the ensuing sprint or else have to run again.

So I think to myself how I don't want simply getting through life to feel like running a marathon, so I can reach the finish line and think, "Oh man, that was rough, thank goodness it's finally over." I mean, that's the biggest reason why I could never see myself running a marathon in the first place. Do I really want to look at my life that way? Get to the end and think, "at least I made it"?

I keep telling myself that this experience will not last forever and will not always define my life and who I am as a person, though it has changed the person I am and will no doubt influence the person I am to become. So the other response I have to the notion of the marathon is that a marathon can be measured. 26.2 miles, in fact, is all that constitutes the length of a marathon. And by no means am I trying to diminish the accomplishment or feat that is running a marathon. It is obviously one of the greatest challenges to overcome and one of the most demanding to achieve of things we know. Its tradition is meant to honor the first man to ever run such a distance, at the end of which he dropped dead. So I can imagine the immense satisfaction one might feel at the completion of a marathon, but as I said, I have little to no intention of ever running one. I just don't see realistically how I would enjoy the experience.

I last wrote while in the midst of seven weeks of radiation on my shoulders. While radiation did not make me sick in the same way as did the chemo before it, I still found it rather unpleasant to wake up in the morning to see blood on my sheets coming from the severe burns on my arms that had turned my skin into crocodile leather.

Shortly after radiation ended, I began a regimen of low-dose chemotherapy with the intent to keep going after the disease while affording me more time and freedom to live my life than I had during the first 14 rounds of hell. And while nothing will likely compare to those first 14 rounds, the new low dose regimen started out with a blast.

Round 1 (or round 15, whichever way you prefer to look at it), was the maximum dose allowable, some of it in pills and some more I.V. drugs. Thus began three straight weeks of nausea, vomiting, diarrhea, stomach pains, headaches and the like, different from but comparable in many ways to the heavy chemo from which I had just graduated. I'm actually pretty sure I threw up more times from that first round of low dose chemo than I did through fourteen rounds of the rough stuff.

Fortunately, each round since the first round of low dose has been progressively easier, and I can say that now, currently being halfway through round 5 (or 19, if you will), as I keep my mind occupied so as not to dwell on the partially alleviated nausea, stomach pain, and diarrhea.

People ask me all the time how much longer I will have to do this, and by "this" I assume they mean the low dose chemo because most people don't know that the low dose is only to get me to where my level of recurring disease is low enough for me to qualify to receive the vaccine down at NCI; the vaccine that was made for me a year ago when the nightmare from which I am still not yet fully awake began. So I tell these people what I tell you now, that the most frustrating thing about it is that I don't really know how much longer I will have to do this.

And that's where the marathon idea comes back into play. A marathon has a starting line and a finish line. The idea of its length and difficulty applies here, I get that, but it frustrates me to think that I could be doing this low dose chemo every third week for years, and we would still be taking a "one round at a time" approach. The goal of all this treatment is for me to reach remission, and I'm glad that the goal is still the same. But when people ask, they seem to expect some kind of magical end date. And when I don't have one to give them, it frustrates me all over again.

Even marathons have a finish line.

After the third round of low dose chemo, I had another PET Scan that showed things moving in the right direction. Tumor levels are diminishing, and we could not have hoped for better results. But when the doctor told me to be happy and to celebrate, it was hard for me to take the good news as just that. Sure, it was good news and meant good things for the future, but my next thought after relief is the indefinite number of rounds I have yet to endure before I can even reach the next leg of this journey. Nobody knows when this portion will end, and after that I will still have the vaccines and regular tests and checkups to see if and how well the vaccines actually worked, and I'll still have to wonder if and when the disease will come back, not to mention that in order to even be asking these questions, so many things need to keep going right.

My family and friends often remind me of how strong and positive I've been through all of this. Sure, there are times when I look in the mirror, usually after I throw up or feel the worst I think I can possibly feel, and I think of myself as invincible; like nothing in this world can break me. But there are plenty more times when I feel helpless and my positive attitude and approach to these things leaves me just as quickly as did the meager breakfast I was hoping to keep down that day.

I know I can't be happy all the time. I know nobody can, even the large majority of people who don't have to deal with the things I endure on a daily basis. I want to think of myself as a happy person, nonetheless, and I want to bring joy to others.

I guess over the past few months I've realized that being a role model to others doesn't mean painting the prettiest picture possible from every situation that arises. Sometimes, things just need to be the way they are. Shitty things are shitty. There's no way around that. Shitty days will be shitty days. But if we can continue to see the big picture of things, keep our sights on the results we wish to achieve and the destination we wish to reach, then rough days and rough times may just pose the inevitable bump in the road that keeps us grounded. These days and difficulties may force us to strengthen ourselves as individuals to be better suited to attain that big picture and to one day reach our goals and dreams.

Taking this experience one day at a time never gets any easier. Wanting the freedom I once had and waiting for treatment to allow me to regain it never gets any easier. But the fight gets easier as I get stronger, and the future, though still scary, gets brighter as I continue to grow as a person, a friend, and a survivor.

3 comments:

  1. I know I told you this already but I'm so happy you are writing again. I'm sure a lot of people have missed reading your writing the last few months. You are the bravest person I've ever met. I love you. And I'm so proud of you.

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  2. Heyyy,
    good to hear from you after a long break.

    I hope that this 5th round of low dose chemo is beginning to ease off of side effects and that this week you see some of that happiness you mean to bring to others. I don't know if anyone deserves happiness. I think we create it. And I am happier imagining you might be creating some now. No panaceas in a marathon I am sure... just capture some cool air on a warm day with your loved ones. And I hope you have some good surprises this week too.

    Thinking of you.

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  3. Jon,

    You are an inspiration to other DSRCT families and patients.

    You are in our thoughts and prayers,
    Loiss and William

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