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.

Sleep

I thought that maybe as I further distanced myself from chemo, it would get progressively easier to come back and begin writing more about this new phase of the experience and the new things I'm going through. As I pushed closer and closer to the end of chemo, it was becoming harder to find the right things to say, as well as the energy and motivation to put them onto the page in front of me. I wanted to write, but I felt I had less to share, and it just hasn't gotten any easier.

Maybe it's this unquestioning need I feel to put all of this in the past as fast as possible that makes it difficult to keep coming back to it and diving deeper into its depths by exploring it from so many different angles. Maybe I'm just enjoying being able to get outside and do some of the things I couldn't before, and surely that isn't a bad thing. I feel more like my normal self now than I have in such a long time, it makes me wonder how I went so long without me. I'm still figuring out how to cope with the phantoms in my head that don't seem to want to go away, but I'm okay with having some reminders as long as they don't keep me from being in a positive place. And I still have nightmares a few times a week, where something or someone is desperately trying to kill me, but now when I wake up I can usually fall back asleep, something I couldn't do before.

That's probably made the biggest difference to me since having this extended recovery time. When my body feels good, it's so much easier to fall asleep. And when I can sleep, it makes my body and mind feel so much more refreshed, which in turn makes it easier to fall asleep again the next time. If you know me well, you know that I love and cherish my sleep. I like staying up late, I don't like waking up early, and I don't like alarm clocks, not that I know anyone who does. At the end of the day, I'll take more sleep and a few nightmares over less sleep and a lot of nightmares in a heartbeat.

I still have blood work done once a week. Yesterday I had another Bone Marrow Biopsy, which, I believe, puts my total somewhere in the teens. Tomorrow brings another PET Scan, and next week we confront the decision regarding whether or not to begin low-dose chemo in addition to radiation, or to hold off on it in favor of the vaccines that would begin shortly after radiation ends in a few weeks. So even though radiation is far less severe than was chemo, I'm still constantly reminded of where I am and where I'm trying to go. I'm still taking things one day at a time, and telling myself to appreciate even the little things as I and different aspects of my life continue to get better. The ups and downs remain, as I'm sure they always will, but it is most definitely getting easier to sleep at night.

Fourteen

Chemo ended without a whole lot of fanfare. There was some confetti thrown, maybe a lot of confetti, but minimal fanfare. I'm actually happy I wasn't the one who had to clean up all of the confetti, but I thought given the circumstances I deserved to toss some paper into the air without regard to its sweeping.

Round fourteen brought with it the familiar aftershock that I was anticipating, but as expected I'm beginning to crawl back out of the tunnel and into the daylight. I'll admit that this time, even though it was a 5-day and when I finally got home I felt as if I had been hit by a truck, it wasn't quite like the thirteen rounds preceding it. I was aware that I had finally reached the end, and my adrenaline really carried me through. Over the past few days, I've revisited a lot of the journey in my mind, at least what I haven't blanked out, and it seems that exploring my memory will always be an unpredictably emotional ride.

Fourteen was always my number in basketball. I wore it ever since my dad told me about Oscar Robertson, the "Big O," and the way he forever changed the landscape of the game. Now, that number is forever changed for me. I still have tons of shirts and sweats, assorted gear with fourteen embroidered onto them, but I'm no longer able to think about one without the other. I have a bookcase littered with trophies and plaques from leagues, camps, and competitions, but they don't make certificates or medals for this. I have scars and cobwebs draped across lesions where pieces of my brain used to be, and apparently I've been left with an exaggerated flair for the dramatic.

Fourteen suddenly carries with it a lot more baggage than should a beacon of one's youth, a first love that taught me about dedication and hard work, and so many of the things that got me through fourteen rounds of chemo. I guess it's sort of fitting that it worked out that way, though I'd prefer to associate the things I love with joy rather than resentment. I'm hoping that over time, I'll learn to better appreciate this latest experience, since time is inevitably the eternal healer.

Just as quickly as chemo ended, radiation began. I like it that way, though, one thing right after the other. I don't need a whole lot of time to sit and reflect on the toxic wonder that is chemotherapy. From what I remember, it will be pretty hard to forget.