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.
Sunday, February 7, 2010
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.
Monday, January 25, 2010
Soggy
Every summer during high school, one of my best friends and I would go to weeklong sleep-away basketball camp. It was a good way to get recruited by college coaches while having the opportunity to get away from home and be on our own for a few days.
The first day, before basketball began, there was always a registration period when all of the players were expected to check in, get their room assignments and keys, uniforms, etc. With hundreds of players showing up, it was prime time to scope out the competition and start making friends.
It was during this registration process one particular summer that we met Soggy. Realistically, I would doubt that I’ve spelled his name correctly, but I never saw it written down, so I’m going with Soggy. I’ll never forget the moment when I first saw him waiting in line to approach the table and introduce himself to the coach in charge of registration. He was decked out in Los Angeles Lakers gear; a purple t-shirt and purple shorts which managed to reach only about halfway to his knees, a Lakers baseball cap, complemented by white mid-high socks and a black fanny pack around his waist, which was, to say the least, the proverbial cherry on top of his already striking attire. He had arrived from France and walked right into our summer camp experience, and we felt immediately compelled to befriend him.
Soggy was initially resistant to our efforts to hang out with him, but he eventually came around to our jovial persistence. We asked his advice on all sorts of topics, though he never really embraced being the focus of our attention. To the best of my recollection, I would say that we were perfectly genuine in our attempts to make him feel more comfortable in a foreign and presumably intimidating situation, though our motivation to pick his brain was admittedly somewhat humor-driven.
At night, my friend and I would become restless in our dorm room, and it became our routine to entertain ourselves by making conversation through the courtyard with anyone willing to respond.
“Soggy, where are you?” we called out one evening, but he didn’t answer.
We tried a few more times, and after a while, we heard something along the lines of, “Come down to room 422! I got your Soggy, mother#$&^s!”
Encouraged, we yelled back, “Is that where Soggy is?”
It was not where Soggy was, and needless to say, we never went down to room 422.
The next day, I overheard a concerned coach approach Soggy.
“Soggy,” he began, “Were you okay last night? Your friends were looking for you, I was worried.”
Soggy had apparently been unaware of our attempts to locate him, saying, “Coach, I do not know what you are talking about. I was asleep at ten o’clock!”
Hearing this, I was shocked that our friend was such a disciplined adolescent. I had no idea that anyone at the camp went to sleep so early. In actuality, the motivation behind telling this story comes primarily from the fact that the other night I found myself crawling into bed at 10:00PM, and trying to think of the last time I had been to bed so early made me think of Soggy. Nevertheless, Soggy still makes me smile, so I’m glad for the occasion to talk about him. I hope he’s doing well, and to one day encounter his bright smile and fanny pack again.
The first day, before basketball began, there was always a registration period when all of the players were expected to check in, get their room assignments and keys, uniforms, etc. With hundreds of players showing up, it was prime time to scope out the competition and start making friends.
It was during this registration process one particular summer that we met Soggy. Realistically, I would doubt that I’ve spelled his name correctly, but I never saw it written down, so I’m going with Soggy. I’ll never forget the moment when I first saw him waiting in line to approach the table and introduce himself to the coach in charge of registration. He was decked out in Los Angeles Lakers gear; a purple t-shirt and purple shorts which managed to reach only about halfway to his knees, a Lakers baseball cap, complemented by white mid-high socks and a black fanny pack around his waist, which was, to say the least, the proverbial cherry on top of his already striking attire. He had arrived from France and walked right into our summer camp experience, and we felt immediately compelled to befriend him.
Soggy was initially resistant to our efforts to hang out with him, but he eventually came around to our jovial persistence. We asked his advice on all sorts of topics, though he never really embraced being the focus of our attention. To the best of my recollection, I would say that we were perfectly genuine in our attempts to make him feel more comfortable in a foreign and presumably intimidating situation, though our motivation to pick his brain was admittedly somewhat humor-driven.
At night, my friend and I would become restless in our dorm room, and it became our routine to entertain ourselves by making conversation through the courtyard with anyone willing to respond.
“Soggy, where are you?” we called out one evening, but he didn’t answer.
We tried a few more times, and after a while, we heard something along the lines of, “Come down to room 422! I got your Soggy, mother#$&^s!”
Encouraged, we yelled back, “Is that where Soggy is?”
It was not where Soggy was, and needless to say, we never went down to room 422.
The next day, I overheard a concerned coach approach Soggy.
“Soggy,” he began, “Were you okay last night? Your friends were looking for you, I was worried.”
Soggy had apparently been unaware of our attempts to locate him, saying, “Coach, I do not know what you are talking about. I was asleep at ten o’clock!”
Hearing this, I was shocked that our friend was such a disciplined adolescent. I had no idea that anyone at the camp went to sleep so early. In actuality, the motivation behind telling this story comes primarily from the fact that the other night I found myself crawling into bed at 10:00PM, and trying to think of the last time I had been to bed so early made me think of Soggy. Nevertheless, Soggy still makes me smile, so I’m glad for the occasion to talk about him. I hope he’s doing well, and to one day encounter his bright smile and fanny pack again.
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