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.
Thursday, March 11, 2010
Wednesday, February 24, 2010
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.
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.
Saturday, February 13, 2010
On Second Thought...
On second thought, the doctors found too many potential risks to radiating all of the remaining tumor spots. While I'm a little disappointed, I'm actually kind of relieved. There are so many dangers associated with radiation, it will be good to spare my brain, heart, lungs, liver, and every other organ that would have felt the burn, even if it means lengthening the road to remission.
I'm still looking at 31 days of radiation on my arms, starting pretty much immediately after my last chemo. I don't know what it means that the other tumor spots aren't going to be targeted, but it gives my bones some extra time to heal, so when radiation is finished and we do some more scans, it will probably leave us with a more accurate picture of what's really left. I'm slightly concerned that the rest will allow the tumor to recover and start growing again, but after fourteen rounds of chemo it has to be tired like me, right? And if it does start to spread again, we'll go after it. But hopefully my daily coaxing and pleading has convinced the beast to stay down.
When I think about it, a lot has changed over the past few months. First and foremost, the tumor has continued to respond to chemo. We compared the scan from October with the scan from last week, and the improvement is really kind of remarkable. I always feel like I'm going to jinx it when I say things like that, but it's true.
I kicked the morphine I was on a while ago, despite having started with an unruly dosage. I go out with my friends on occasion, though it's hard sometimes to resist indulging my temptations and urges to misbehave. At this point, though, I've stayed on track for so long, it just doesn't make sense to give in now. I also think I've regained a lot of the self-control I felt like I had lost before. Most of the time, I still don't feel like this is my normal body, but at least I no longer hallucinate, wake up in the middle of the night to urinate in the garbage can, or wait for a small miracle every time I want to get turned on. I'm two or so weeks away from sushi, and even though I know the misery that awaits me those first few days, after this next round of chemo my body will simply continue to improve. I won't get better to a point and then have to drag myself back and do it all over again. That also means I should have hair before too long, and I've begun to grow tired of seeing the light shining off my head when I look in the mirror.
My doctor reminds me that any way I look at it, I'm going to have a long-term relationship with medicine. But hey, all things considered, that's a lot better than not having any relationship with it at all. At least it means I'm going to be around for a little while longer. I'm looking at a much easier time without chemo, and I figure that as long as I keep heading in the direction I'm already going, my situation can't get worse. I already try to take things as they come, on a daily basis, and the only expectations I plan to build are of myself and the things I want to accomplish.
A long time ago, I said it's hard to find progress in stability due to a general inability to be patient. But now, at least for me, I think stability means I've made a lot of progress. Stability means I can keep looking ahead with confidence, knowing with at least some certainty that there's going to be another day to fight.
I'm still looking at 31 days of radiation on my arms, starting pretty much immediately after my last chemo. I don't know what it means that the other tumor spots aren't going to be targeted, but it gives my bones some extra time to heal, so when radiation is finished and we do some more scans, it will probably leave us with a more accurate picture of what's really left. I'm slightly concerned that the rest will allow the tumor to recover and start growing again, but after fourteen rounds of chemo it has to be tired like me, right? And if it does start to spread again, we'll go after it. But hopefully my daily coaxing and pleading has convinced the beast to stay down.
When I think about it, a lot has changed over the past few months. First and foremost, the tumor has continued to respond to chemo. We compared the scan from October with the scan from last week, and the improvement is really kind of remarkable. I always feel like I'm going to jinx it when I say things like that, but it's true.
I kicked the morphine I was on a while ago, despite having started with an unruly dosage. I go out with my friends on occasion, though it's hard sometimes to resist indulging my temptations and urges to misbehave. At this point, though, I've stayed on track for so long, it just doesn't make sense to give in now. I also think I've regained a lot of the self-control I felt like I had lost before. Most of the time, I still don't feel like this is my normal body, but at least I no longer hallucinate, wake up in the middle of the night to urinate in the garbage can, or wait for a small miracle every time I want to get turned on. I'm two or so weeks away from sushi, and even though I know the misery that awaits me those first few days, after this next round of chemo my body will simply continue to improve. I won't get better to a point and then have to drag myself back and do it all over again. That also means I should have hair before too long, and I've begun to grow tired of seeing the light shining off my head when I look in the mirror.
My doctor reminds me that any way I look at it, I'm going to have a long-term relationship with medicine. But hey, all things considered, that's a lot better than not having any relationship with it at all. At least it means I'm going to be around for a little while longer. I'm looking at a much easier time without chemo, and I figure that as long as I keep heading in the direction I'm already going, my situation can't get worse. I already try to take things as they come, on a daily basis, and the only expectations I plan to build are of myself and the things I want to accomplish.
A long time ago, I said it's hard to find progress in stability due to a general inability to be patient. But now, at least for me, I think stability means I've made a lot of progress. Stability means I can keep looking ahead with confidence, knowing with at least some certainty that there's going to be another day to fight.
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