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.
Wednesday, February 24, 2010
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.
Sunday, February 7, 2010
The Next Step
As long as they let me in a week from Wednesday, then two weeks from today will mark the fifth day of the fourteenth round of chemo. That's the last scheduled day of chemotherapy. It's exciting. Maybe it's just been going on for so long, or maybe I know there's more to come, but for whatever reason it just doesn't really feel like anything is ending.
The radiation oncologist told me before I left the thirteenth round that they will likely be able to treat all of the remaining tumor spots with radiation. She said it would happen over six weeks, five days a week, which might grow tiresome, but I'm not worried about it. She also told me that radiation may slightly heighten my chances of acquiring a sarcoma twenty or so years down the line, but if it does happen, the tumor will likely respond to radiation. It's ironic, I know, and I'd like to give her the benefit of the doubt and believe that she actually did read my chart or learn my background or whatever before she started telling me all of this, because, wait, oh yes, I already have a sarcoma! And the point of radiation is to kill this one so that it doesn't kill me in, say, a year or two. Bottom line, I'll take my chances twenty years from now.
I guess that overall it's good news. I was hoping they'd be able to radiate all of the remaining spots, so now six weeks of radiation just becomes another milestone. I know I said it doesn't feel like a whole lot is changing, and maybe that's because I'm looking primarily at the big picture, but it's definitely important to appreciate every accomplishment for its own worth. Enduring each round of chemo has felt like an accomplishment, and it's something that nobody can ever take away from me. And that's worth something, I know, I'm just having trouble finding the joy in it just yet.
For some reason, I'm finding it hard to appreciate the journey because I'm so focused on the end result. Maybe "appreciate" isn't the most appropriate term, since there hasn't been much fun involved, but it's still odd to me that the anticipation of finishing chemo hasn't infused me with renewed energy. Maybe thirteen rounds have taken a toll and I'm hitting some kind of wall, but I refuse to accept that.
It has to be up to me; that's the only thing that makes sense. I can still set my sights on the finish line, while reveling in the good days and the progress I've made so far, because the truth of the matter is that none of the doctors knew at the beginning that I'd be where I am right now. I've been told that years from now, this may all seem like a distant memory, but I don't buy it. I don't think I'll ever be able to truly distance myself from this experience, partly because of the fact that it could become a reality again at any moment. I think it could be a blessing in disguise, always reminding me to treat each day, each moment as a gift.
It's the journey that makes the destination so much greater, right? Well, I think in the case of beating cancer the destination is the reward, and the journey, for the most part, sucks. But that doesn't mean I should stop celebrating the things that merit celebration, no matter how small they might be. There will always be obstacles to overcome, but when we conquer one we don't actively search for the next, we pat ourselves on the back, deservedly, for a job well done. And that's the way it should be. It's worth it to take each opportunity to be excited; it's a lot easier to tell when we've done something good than it is to predict what's going to happen next. I'd rather be excited than apprehensive, because whatever's going to happen next is going to happen either way.
The radiation oncologist told me before I left the thirteenth round that they will likely be able to treat all of the remaining tumor spots with radiation. She said it would happen over six weeks, five days a week, which might grow tiresome, but I'm not worried about it. She also told me that radiation may slightly heighten my chances of acquiring a sarcoma twenty or so years down the line, but if it does happen, the tumor will likely respond to radiation. It's ironic, I know, and I'd like to give her the benefit of the doubt and believe that she actually did read my chart or learn my background or whatever before she started telling me all of this, because, wait, oh yes, I already have a sarcoma! And the point of radiation is to kill this one so that it doesn't kill me in, say, a year or two. Bottom line, I'll take my chances twenty years from now.
I guess that overall it's good news. I was hoping they'd be able to radiate all of the remaining spots, so now six weeks of radiation just becomes another milestone. I know I said it doesn't feel like a whole lot is changing, and maybe that's because I'm looking primarily at the big picture, but it's definitely important to appreciate every accomplishment for its own worth. Enduring each round of chemo has felt like an accomplishment, and it's something that nobody can ever take away from me. And that's worth something, I know, I'm just having trouble finding the joy in it just yet.
For some reason, I'm finding it hard to appreciate the journey because I'm so focused on the end result. Maybe "appreciate" isn't the most appropriate term, since there hasn't been much fun involved, but it's still odd to me that the anticipation of finishing chemo hasn't infused me with renewed energy. Maybe thirteen rounds have taken a toll and I'm hitting some kind of wall, but I refuse to accept that.
It has to be up to me; that's the only thing that makes sense. I can still set my sights on the finish line, while reveling in the good days and the progress I've made so far, because the truth of the matter is that none of the doctors knew at the beginning that I'd be where I am right now. I've been told that years from now, this may all seem like a distant memory, but I don't buy it. I don't think I'll ever be able to truly distance myself from this experience, partly because of the fact that it could become a reality again at any moment. I think it could be a blessing in disguise, always reminding me to treat each day, each moment as a gift.
It's the journey that makes the destination so much greater, right? Well, I think in the case of beating cancer the destination is the reward, and the journey, for the most part, sucks. But that doesn't mean I should stop celebrating the things that merit celebration, no matter how small they might be. There will always be obstacles to overcome, but when we conquer one we don't actively search for the next, we pat ourselves on the back, deservedly, for a job well done. And that's the way it should be. It's worth it to take each opportunity to be excited; it's a lot easier to tell when we've done something good than it is to predict what's going to happen next. I'd rather be excited than apprehensive, because whatever's going to happen next is going to happen either way.
Monday, February 1, 2010
The Right Direction
I had a bone scan on Friday since my last tests were done three months ago, and it was a good time to see how much progress has been made over the last seven rounds of chemo. With only two scheduled rounds remaining, the doctors want to make a plan of attack from here on out. In order to do that, they need a point of reference; an illustration of where we stand right now.
I was really nervous about the scan, since it pretty much dictates the rest of my treatment. The options appear to be radiation, which is only really an option if there isn't much tumor left, and the remains are located in few enough places on my body. If the tumor shows up in too many places, the option would likely be to continue with lower dosage chemo for however long it takes to be rid of the tumor completely. Either way, I'll be going back to Bethesda for the vaccinations, but the other question that arises is whether or not to undergo a stem cell transplant. It could be helpful, but it would require putting my body through hell (that's not to say that chemo hasn't been hell all along, but this would mean extra miserable, possibly dangerous hell). People actually die from those procedures, and I'm in a really difficult position having to make the final decision regarding whether or not to do it.
Fortunately, the results of the bone scan were good. The tumor is gone from my spine and shoulders, and it only persists in my arms, sternum, pelvis, and skull. It was less intense in all of these places than it was three months ago, so it's reasonable to conclude that the chemo is working. The doctor also told me that bone scans show the abnormal things going on in the bones, like a tumor, as well as bone restructuring, or healing. It could be that the tumor is even smaller than the scan showed, but that my bones are healing in those places so they showed up as abnormal. I want to believe that this is the case in my pelvis, at least somewhat, considering how many pieces of bone have been broken off during Bone Marrow Biopsies. There's just no way that the bone isn't still recovering from that.
So the good news is that I'm heading in the right direction. The scary part is that we have to make some decisions about what to do next, since I can't keep going to chemo forever. (I actually consider that a good thing; I don't know how much longer I could take it, but the bottom line is that it appears to be working.) The reality remains that this type of tumor usually returns, so not only do we have to eliminate it, but we have to do what it takes to give me the best shot at keeping it from coming back.
It would be easy, and reasonable, for that matter, to constantly be in fear. I have to decide whether or not to undergo a procedure that could save me just as soon as kill me, and said procedure, among other treatments, would be performed in order to help me survive a tumor which most people who get it don't survive. If they manage to survive it the first time, it usually comes back to finish the job. Yes, I would say I have defensible reason to be afraid.
My doctor told me today that she would never bet against me, and it really meant a lot to me. She says she's never seen anyone go through chemo at the pace I've (for the most part) been able to maintain. I pride myself in my ability to bounce back. I just think that's the way you have to be if you're going to beat something like this. You just have to believe that nothing can keep you from winning, and nothing can stand in the way of you attaining the things you want. You obviously need to factor in some luck (like the treatment actually working, without which I wouldn't have a prayer) but so much of it depends on you. And it's not just cancer, or chemo, or whatever, I'm pretty sure it's true of anything. You're not going to get where you want to go if you don't truly believe you're going to be there in the end.
Fear can do nothing but stand in my way. I'll beat this thing before it kills me, and if it comes back, I'll beat it again. It's comforting to know that my doctor is behind me and that she believes in me, but I wouldn't bet against me either, and I think that's important, too. There's always a chance that I'm wrong; that truth has been there all along, and I'm aware of it. In actuality, it's a reality that exists. Not to me, though. In my mind, there has only ever been one option.
I was really nervous about the scan, since it pretty much dictates the rest of my treatment. The options appear to be radiation, which is only really an option if there isn't much tumor left, and the remains are located in few enough places on my body. If the tumor shows up in too many places, the option would likely be to continue with lower dosage chemo for however long it takes to be rid of the tumor completely. Either way, I'll be going back to Bethesda for the vaccinations, but the other question that arises is whether or not to undergo a stem cell transplant. It could be helpful, but it would require putting my body through hell (that's not to say that chemo hasn't been hell all along, but this would mean extra miserable, possibly dangerous hell). People actually die from those procedures, and I'm in a really difficult position having to make the final decision regarding whether or not to do it.
Fortunately, the results of the bone scan were good. The tumor is gone from my spine and shoulders, and it only persists in my arms, sternum, pelvis, and skull. It was less intense in all of these places than it was three months ago, so it's reasonable to conclude that the chemo is working. The doctor also told me that bone scans show the abnormal things going on in the bones, like a tumor, as well as bone restructuring, or healing. It could be that the tumor is even smaller than the scan showed, but that my bones are healing in those places so they showed up as abnormal. I want to believe that this is the case in my pelvis, at least somewhat, considering how many pieces of bone have been broken off during Bone Marrow Biopsies. There's just no way that the bone isn't still recovering from that.
So the good news is that I'm heading in the right direction. The scary part is that we have to make some decisions about what to do next, since I can't keep going to chemo forever. (I actually consider that a good thing; I don't know how much longer I could take it, but the bottom line is that it appears to be working.) The reality remains that this type of tumor usually returns, so not only do we have to eliminate it, but we have to do what it takes to give me the best shot at keeping it from coming back.
It would be easy, and reasonable, for that matter, to constantly be in fear. I have to decide whether or not to undergo a procedure that could save me just as soon as kill me, and said procedure, among other treatments, would be performed in order to help me survive a tumor which most people who get it don't survive. If they manage to survive it the first time, it usually comes back to finish the job. Yes, I would say I have defensible reason to be afraid.
My doctor told me today that she would never bet against me, and it really meant a lot to me. She says she's never seen anyone go through chemo at the pace I've (for the most part) been able to maintain. I pride myself in my ability to bounce back. I just think that's the way you have to be if you're going to beat something like this. You just have to believe that nothing can keep you from winning, and nothing can stand in the way of you attaining the things you want. You obviously need to factor in some luck (like the treatment actually working, without which I wouldn't have a prayer) but so much of it depends on you. And it's not just cancer, or chemo, or whatever, I'm pretty sure it's true of anything. You're not going to get where you want to go if you don't truly believe you're going to be there in the end.
Fear can do nothing but stand in my way. I'll beat this thing before it kills me, and if it comes back, I'll beat it again. It's comforting to know that my doctor is behind me and that she believes in me, but I wouldn't bet against me either, and I think that's important, too. There's always a chance that I'm wrong; that truth has been there all along, and I'm aware of it. In actuality, it's a reality that exists. Not to me, though. In my mind, there has only ever been one option.
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