It's now been three months without chemo, or two months out from the end of my last cycle. I continue to improve, though I'm starting to get a feel for my new normal; not as productive or sharp as I once was, but more productive, sharper, and more creative on average than I've felt for over a year. Last night I awoke with a fascinating idea for a story kicking around in my head. Maybe it's time for a new project.
Yesterday I had an MRI, and this Thursday I have a follow-up appointment with Dr. C. I presume that is when I shall discover if going off the chemo has had any negative consequences, though I don't imagine it will. I don't feel anything that leads me to suspect any regrowth or complications. I haven't heard from Dr. C. yet as I might had the MRI shown anything particularly bad, but he doesn't work on Mondays or Tuesdays so maybe he hasn't had a chance to take a look just yet. Either way, not something I intend to lose any sleep over. One of these days, after an MRI much like yesterday's, I will hear some bad news. Maybe that day will be Thursday and maybe not. When it happens, I'll review the situation and we'll all figure out where to go from there. Until then, no sense obsessing over it.
I know that I got lucky with my first operation. It had an impact, sure, but I can still write. I can still live my life. But what about the next time? What if they have to go back into my head and remove more of my brain? Can I roll the dice twice? Is there any chance I could get through a second operation as cleanly as the first?
I have so many stories I'd like to tell. I do not feel my death hanging over me, but it seems closer on the horizon. I will not die today, but I know I will not live long enough to tell all of my stories to my satisfaction. Yet even with that thought, one that might drive me to hours, even days of steady writing in the past, I find so little time to do more than what is required of me. I tell boring stories all day at work, for people who don't much care about the ending. They contain no twists nor turns. Interesting characters are few and far between, anomalies often swallowed by predictability. Rivalries are dulled by bureaucracy and legalese, and the outcome is always the same, time and time again.
I don't think a vacation would quite do the trick. Were I wealthy enough to retire, then maybe I could focus more on telling the stories I'd like to tell. But who couldn't use a little more money, especially in this economy?
Maybe I'll continue to improve, and be able to spend more time writing for myself. Even if I can't tell all of my stories, maybe with a little time and a little luck, I'll at least be able to tell the best ones.
In the meantime, at least I have this blog. This is one story I can
tell, and one in which I am quite personally invested. One that, if I
may be so bold, a few people seem to read, and one that, in the
endless reaches of the vast internet, will outlive me, or you, or anyone
else alive today. Evidence that once upon a time, there was a man who called himself Knightly.
Showing posts with label mri. Show all posts
Showing posts with label mri. Show all posts
Tuesday, January 29, 2013
Friday, August 31, 2012
The Relief of Mundane Problems
I had an awful day on Wednesday.
Stressful, long, exhausting, nigh-disastrous, its fires still burning (figuratively... I think), and infectious, it was my worst day in recent memory. Let's start at the beginning.
It rained heavily on the way to work. The defogger in my car hasn't worked since I last had it repaired, something I've meant to address but between work and my various treatments I've lacked the time and energy to do so. At least, that's what I tell myself. During my commute the ventilation blowers kicked on full blast and refused to shut off, even when I took the key out of the ignition. Maybe the car was trying to dehumidify the interior - impossible to do, given the aforementioned problem with the air conditioner - and drained itself in the vain attempt, but by the end of the day the battery was completely dead. Jack was kind enough to jump it for me and tried to help me find the problem, or at least get it to stop wasting power, but nothing short of unplugging the battery did the trick. As soon as we reconnected the battery, the blowers started right back up. Yeah, this is pretty boring. It was better at the time, because then it was less boring and more of a tremendous hassle.
So I took my car to the local Sears, which was the only service shop I knew of that was open at the time, only to find that they don't actually do repairs. About 30 miles wasted, since traffic forced me to take the long way back toward my home, and my usual repair shop. Their mechanics had all gone home so I'd have to leave the car overnight and pick it up the next day. The owner drove me home, and it was about 2 minutes from my front door when I realized I'd left my house key on my car keychain, and my spare was locked inside my house, which in retrospect is a really stupid place to ever keep a spare key. To be fair, this had been the first time I've locked myself out of my room since my freshman year of college.
My parents had my spare spare, but were a good 40 minutes away. As the sun set, I sat on my tiny deck and watched a spider weave its web in a tree across the way. The heat of the day relented under a cool breeze. None of my neighbors spotted me, which spared me the humiliation of explaining why I was suddenly such a fan of fresh air and mosquitoes. When I asked my father to bring my key, I'd apologized so many times I lost count. Yet as I sat there, swatting at the insects of the growing dusk, I felt as though I'd won a strange sort of victory.
I'd had a truly rotten day, but not one of my problems had a thing to do with my cancer. Each problem was mundane and common. That I could still drive enough to have car troubles, was a victory. That I could still pay my mortgage such that I had a place to call home, was a victory.
When Dad showed up I apologized again. We hugged, I unlocked my door, and the both of us went home. It was 8PM.
I have my car back now, and it's mostly fixed with the few remaining parts on order. It's good enough to drive for now, and the blowers are working properly again, $230 later. Good enough to take me to the MRI I had today, then to my parents' place for dinner, and back home again. Next week I'll bring it back in to finish off those remaining repairs.
In the meantime, I should probably figure out a better place to stash my spare key.
Stressful, long, exhausting, nigh-disastrous, its fires still burning (figuratively... I think), and infectious, it was my worst day in recent memory. Let's start at the beginning.
It rained heavily on the way to work. The defogger in my car hasn't worked since I last had it repaired, something I've meant to address but between work and my various treatments I've lacked the time and energy to do so. At least, that's what I tell myself. During my commute the ventilation blowers kicked on full blast and refused to shut off, even when I took the key out of the ignition. Maybe the car was trying to dehumidify the interior - impossible to do, given the aforementioned problem with the air conditioner - and drained itself in the vain attempt, but by the end of the day the battery was completely dead. Jack was kind enough to jump it for me and tried to help me find the problem, or at least get it to stop wasting power, but nothing short of unplugging the battery did the trick. As soon as we reconnected the battery, the blowers started right back up. Yeah, this is pretty boring. It was better at the time, because then it was less boring and more of a tremendous hassle.
So I took my car to the local Sears, which was the only service shop I knew of that was open at the time, only to find that they don't actually do repairs. About 30 miles wasted, since traffic forced me to take the long way back toward my home, and my usual repair shop. Their mechanics had all gone home so I'd have to leave the car overnight and pick it up the next day. The owner drove me home, and it was about 2 minutes from my front door when I realized I'd left my house key on my car keychain, and my spare was locked inside my house, which in retrospect is a really stupid place to ever keep a spare key. To be fair, this had been the first time I've locked myself out of my room since my freshman year of college.
My parents had my spare spare, but were a good 40 minutes away. As the sun set, I sat on my tiny deck and watched a spider weave its web in a tree across the way. The heat of the day relented under a cool breeze. None of my neighbors spotted me, which spared me the humiliation of explaining why I was suddenly such a fan of fresh air and mosquitoes. When I asked my father to bring my key, I'd apologized so many times I lost count. Yet as I sat there, swatting at the insects of the growing dusk, I felt as though I'd won a strange sort of victory.
I'd had a truly rotten day, but not one of my problems had a thing to do with my cancer. Each problem was mundane and common. That I could still drive enough to have car troubles, was a victory. That I could still pay my mortgage such that I had a place to call home, was a victory.
When Dad showed up I apologized again. We hugged, I unlocked my door, and the both of us went home. It was 8PM.
I have my car back now, and it's mostly fixed with the few remaining parts on order. It's good enough to drive for now, and the blowers are working properly again, $230 later. Good enough to take me to the MRI I had today, then to my parents' place for dinner, and back home again. Next week I'll bring it back in to finish off those remaining repairs.
In the meantime, I should probably figure out a better place to stash my spare key.
Monday, April 9, 2012
My World, My Mirror
I have always felt a sort of connection to the natural world. Over the past year, our state has been lashed by storms of unprecedented strength, shattering our characteristic forests and coaxing our citizens to further trim back what growth survived the wind and rain. Derelict buildings, once masked by foliage, have started to emerge from the thinning woodlands along our streets. I cannot help but think of my hair when I see familiar patches of forest, cut back so drastically I no longer recognize them, save for the many stumps.
But I also have always felt a strange attraction to derelict structures. They resonate with such stark, unashamed truth: this is what we were, and what we shall be. Decaying, skeletal, a monument to our accomplishments and comfort but victim to the natural forces that were here before us and will remain after us. I have always wanted to go exploring in one but know that that's both illegal and dangerous. The former doesn't bother me much any longer, boyscout though I've been. The latter makes me want to bring someone, so as not to go alone. I do not know if I know anyone I could recruit for such an undertaking, but that is the only way to really know a derelict. I pass an old house every day, on my way to and from work. Its windows are open, some broken, some missing entirely as if gutted from the structure. Dead vines lace across its bone-white facade, like black arteries through adipocere. I want to go in. I want to see how it was left, and wonder to myself, what story played out here? Who was the last person to touch this discarded object, or that? Did they know they would never return? Did they regret not bringing it with them? What were the last words spoken here?
Above all, I am most connected with water, and perhaps that is why I cannot tolerate the intersection of derelict and water. When I was very young, I couldn't stand the sight of something artificial obscured by the murk of a lake. I remember seeing the ladder to a dock within the pea green water, light streaming around it, shadows reaching down into the darkness below. I always imagined there was something down there, something metal and jagged and wrong, waiting to reach up and grab me. I had to steel my nerves to swim over that dark water. Even after I dove off that dock, and swam all the way down to feel the slime and mud at the bottom, 20 feet below, I still avoided the chains that moored the dock in place. Then one year, I was nearly a teenager at the time, I went to the lake for a swim. The other swimmers looked like there was something wrong with their skin. Tiny, thin black lines, like hairs, all over. They were all lined up in front of a hose, which was used to cleanse their bodies of this strange phenomenon, of the sludge that clung to their body hair.
Toxic sludge. The lake had been poisoned by runoff.
Another place miles away, the only natural spring I've ever seen. I remember the natural stone pool into which it flowed, crystal clear. The water was so pure, and so delicious. It isn't, any longer. It, too, has been poisoned.
Fitting, then, that I too have become poisoned. I wonder if I will ever be pure again.
I know what it's like to drown. I don't mean that metaphorically. I mean that I have struggled for breath with all my strength, and found my strength lacking. I have felt my lungs fill with water, and my body go limp. I remember the incredibly clarity of realizing that I am about to die, and the peace of acceptance. Then the weight on me lifted, I pushed to the surface with my last ounce of strength, and I coughed up two lungs' worth of pool water.
Can't say I'm disappointed with how that turned out, but that calmness still haunts me. If there's a moral to this story, I need some more time before I can see it. Unless it's just that "Let's Drown Knightly" isn't a great pool game.
MRI tomorrow. Wish me luck, boys and girls.
But I also have always felt a strange attraction to derelict structures. They resonate with such stark, unashamed truth: this is what we were, and what we shall be. Decaying, skeletal, a monument to our accomplishments and comfort but victim to the natural forces that were here before us and will remain after us. I have always wanted to go exploring in one but know that that's both illegal and dangerous. The former doesn't bother me much any longer, boyscout though I've been. The latter makes me want to bring someone, so as not to go alone. I do not know if I know anyone I could recruit for such an undertaking, but that is the only way to really know a derelict. I pass an old house every day, on my way to and from work. Its windows are open, some broken, some missing entirely as if gutted from the structure. Dead vines lace across its bone-white facade, like black arteries through adipocere. I want to go in. I want to see how it was left, and wonder to myself, what story played out here? Who was the last person to touch this discarded object, or that? Did they know they would never return? Did they regret not bringing it with them? What were the last words spoken here?
Above all, I am most connected with water, and perhaps that is why I cannot tolerate the intersection of derelict and water. When I was very young, I couldn't stand the sight of something artificial obscured by the murk of a lake. I remember seeing the ladder to a dock within the pea green water, light streaming around it, shadows reaching down into the darkness below. I always imagined there was something down there, something metal and jagged and wrong, waiting to reach up and grab me. I had to steel my nerves to swim over that dark water. Even after I dove off that dock, and swam all the way down to feel the slime and mud at the bottom, 20 feet below, I still avoided the chains that moored the dock in place. Then one year, I was nearly a teenager at the time, I went to the lake for a swim. The other swimmers looked like there was something wrong with their skin. Tiny, thin black lines, like hairs, all over. They were all lined up in front of a hose, which was used to cleanse their bodies of this strange phenomenon, of the sludge that clung to their body hair.
Toxic sludge. The lake had been poisoned by runoff.
Another place miles away, the only natural spring I've ever seen. I remember the natural stone pool into which it flowed, crystal clear. The water was so pure, and so delicious. It isn't, any longer. It, too, has been poisoned.
Fitting, then, that I too have become poisoned. I wonder if I will ever be pure again.
I know what it's like to drown. I don't mean that metaphorically. I mean that I have struggled for breath with all my strength, and found my strength lacking. I have felt my lungs fill with water, and my body go limp. I remember the incredibly clarity of realizing that I am about to die, and the peace of acceptance. Then the weight on me lifted, I pushed to the surface with my last ounce of strength, and I coughed up two lungs' worth of pool water.
Can't say I'm disappointed with how that turned out, but that calmness still haunts me. If there's a moral to this story, I need some more time before I can see it. Unless it's just that "Let's Drown Knightly" isn't a great pool game.
MRI tomorrow. Wish me luck, boys and girls.
Wednesday, February 29, 2012
No News is Good News
And good news is good news too.
I haven't had a whole lot to report lately. Things have been pretty quiet and I rather hope they stay that way. I guess that's just how this stage of treatment works; things are either boring or bad. Given the choices, I'd prefer boring. It'd be nice if I could try out one of those new treatments even if only for something to write about.
I did get a call from my neuro-oncologist in Manhattan with a bit of good news. He and his fellow took it upon themselves to go over my MRIs since the end of my radiation treatment, pixel by pixel. They're in agreement that my cancer has not merely been stable, but has not changed in the slightest. They are increasingly of the opinion that the two dots of enhancement that show up on my MRI are actually just scar tissue, which I've got to say would be pretty awesome. So far that doesn't equate to any sort of change in my ongoing treatment, but they say if there hasn't been any change by October we can discuss ending my chemotherapy early. That wouldn't quite be a confirmation that I'm cured, but it's about as close as I can get. I'll take it.
In other news, the good people over at Cancer Forums have offered me a position as a moderator in their Brain Cancer section, and I have accepted. To anyone who hasn't taken a look yet, it's a great community that offers support, advice, networking, and even just a sounding board for all patients of all kinds of cancer, as well as their friends, families and caretakers. The stories told on those boards are honest, sometimes sad, sometimes inspiring, and I am honored for the opportunity to help maintain the level of quality that brought me there in the first place. I've made many friends through my participation in the forum, including regular posters, other moderators, and the occasional individual who has contacted me privately for advice. I like to think that maybe I've helped a few people along the way. It's a great resource and I would recommend it to anyone.
Happy Leap Day, everyone.
I haven't had a whole lot to report lately. Things have been pretty quiet and I rather hope they stay that way. I guess that's just how this stage of treatment works; things are either boring or bad. Given the choices, I'd prefer boring. It'd be nice if I could try out one of those new treatments even if only for something to write about.
I did get a call from my neuro-oncologist in Manhattan with a bit of good news. He and his fellow took it upon themselves to go over my MRIs since the end of my radiation treatment, pixel by pixel. They're in agreement that my cancer has not merely been stable, but has not changed in the slightest. They are increasingly of the opinion that the two dots of enhancement that show up on my MRI are actually just scar tissue, which I've got to say would be pretty awesome. So far that doesn't equate to any sort of change in my ongoing treatment, but they say if there hasn't been any change by October we can discuss ending my chemotherapy early. That wouldn't quite be a confirmation that I'm cured, but it's about as close as I can get. I'll take it.
In other news, the good people over at Cancer Forums have offered me a position as a moderator in their Brain Cancer section, and I have accepted. To anyone who hasn't taken a look yet, it's a great community that offers support, advice, networking, and even just a sounding board for all patients of all kinds of cancer, as well as their friends, families and caretakers. The stories told on those boards are honest, sometimes sad, sometimes inspiring, and I am honored for the opportunity to help maintain the level of quality that brought me there in the first place. I've made many friends through my participation in the forum, including regular posters, other moderators, and the occasional individual who has contacted me privately for advice. I like to think that maybe I've helped a few people along the way. It's a great resource and I would recommend it to anyone.
Happy Leap Day, everyone.
Monday, February 13, 2012
MRI Results and Other Stuff
Had another MRI last week and got the results back: no change. Still stable. I find myself thinking about how nice it would be to get a little improvement but I can't really complain about a lack of progression. I've actually felt pretty good lately. My mind's felt clear and sharp, and I wonder if my brain's started rebuilding some of those old connections that were so unceremoniously severed or cooked months ago. If we have any linguistics experts in the audience it might be fun to chart my vocabulary over the course of my blog (linguistics experts tend to have an unusual definition of "fun").
I've been chatting with my friend Will again, the one in Canada, and he only has a few more rounds of Temodar left before his doctors cut him loose. He'll still get regular MRIs and whatnot, but that will be the end of his treatment. It's caused me to wonder what that's going to feel like. My NO told me that I'm going to be on 5/28 cycles of Temodar for one year, by which he means two years. Maybe it's the kid in me but "two years" still feels kind of like, "forever." Like I will always take Temodar for five days out of every 28, for all perpetuity (having fun yet, linguists?). There will come a day when I will probably stop taking Temodar. I imagine that will be quite frightening. The chemotherapy is the only thing I'm really doing to fight my cancer. If I stop taking it, will that mean I'm no longer really fighting it? What if it starts to grow again, once the chemo is completely out of my system?
I know these thoughts aren't restricted to some point months and years in the future; it's entirely possible that my cancer could start growing again right now, regardless of my treatment. It's also likely that after two years, the risks of continuing chemotherapy would outweigh the benefits. The people who make it seem to think so, and that's a company that would absolutely love to keep selling me pills for as long as possible. It gets back to bravery versus endurance. Right now, I'm enduring my treatment. What happens when there's no longer a treatment to endure? I guess all I can really do is hope there's something new for me to try by then, perhaps that TTF thing I linked earlier in the month.
I've been playing Kingdoms of Amalur: Reckoning lately. It's a pretty neat game, but one of the core elements of the setting is that everyone has an established fate, and there's an order of individuals who can read that fate and tell people how they are going to die. They develop the idea pretty well, to a point where there are a lot of familiar thoughts and words. Like a father, debating with himself over whether or not to tell his family that he will soon die, and whether it is selfish of him to not want to see them suffer with that knowledge. The story of the game revolves around the fateless protagonist, who, by virtue of their blank destiny, can alter the fates of others and save lives that were not meant to be saved. Maybe once I'm done with chemo I'll keep an eye out for people with pointy ears and giant swords.
Then there's God Bless America, another movie about cancer, specifically brain cancer, specifically how it's completely, totally 100% lethal. It's used as a typical, "nothing to lose" character trait that drives the plot, wherein a brain cancer patient goes on a rampage against vapid American pop culture and also he picks up a teenaged girl somewhere along the line for some platonic and non-creepy reason. A plot like that doesn't really hold up to close examination (why kill someone when you can just, you know, move away from them?) so I imagine it's more about catharsis than anything.
I still haven't seen 50/50, but have been assured that it makes having cancer seem like a totally awesome life filled with casual sex and frequent naps. Guess I'm half way there.
I've been chatting with my friend Will again, the one in Canada, and he only has a few more rounds of Temodar left before his doctors cut him loose. He'll still get regular MRIs and whatnot, but that will be the end of his treatment. It's caused me to wonder what that's going to feel like. My NO told me that I'm going to be on 5/28 cycles of Temodar for one year, by which he means two years. Maybe it's the kid in me but "two years" still feels kind of like, "forever." Like I will always take Temodar for five days out of every 28, for all perpetuity (having fun yet, linguists?). There will come a day when I will probably stop taking Temodar. I imagine that will be quite frightening. The chemotherapy is the only thing I'm really doing to fight my cancer. If I stop taking it, will that mean I'm no longer really fighting it? What if it starts to grow again, once the chemo is completely out of my system?
I know these thoughts aren't restricted to some point months and years in the future; it's entirely possible that my cancer could start growing again right now, regardless of my treatment. It's also likely that after two years, the risks of continuing chemotherapy would outweigh the benefits. The people who make it seem to think so, and that's a company that would absolutely love to keep selling me pills for as long as possible. It gets back to bravery versus endurance. Right now, I'm enduring my treatment. What happens when there's no longer a treatment to endure? I guess all I can really do is hope there's something new for me to try by then, perhaps that TTF thing I linked earlier in the month.
I've been playing Kingdoms of Amalur: Reckoning lately. It's a pretty neat game, but one of the core elements of the setting is that everyone has an established fate, and there's an order of individuals who can read that fate and tell people how they are going to die. They develop the idea pretty well, to a point where there are a lot of familiar thoughts and words. Like a father, debating with himself over whether or not to tell his family that he will soon die, and whether it is selfish of him to not want to see them suffer with that knowledge. The story of the game revolves around the fateless protagonist, who, by virtue of their blank destiny, can alter the fates of others and save lives that were not meant to be saved. Maybe once I'm done with chemo I'll keep an eye out for people with pointy ears and giant swords.
Then there's God Bless America, another movie about cancer, specifically brain cancer, specifically how it's completely, totally 100% lethal. It's used as a typical, "nothing to lose" character trait that drives the plot, wherein a brain cancer patient goes on a rampage against vapid American pop culture and also he picks up a teenaged girl somewhere along the line for some platonic and non-creepy reason. A plot like that doesn't really hold up to close examination (why kill someone when you can just, you know, move away from them?) so I imagine it's more about catharsis than anything.
I still haven't seen 50/50, but have been assured that it makes having cancer seem like a totally awesome life filled with casual sex and frequent naps. Guess I'm half way there.
Thursday, December 22, 2011
MRI Results (for reals)
After an extended and completely predictable series of screw-ups between the mail system and two separate hospitals, both of my oncologists have now seen the MRI report and the images, and have had enough time to make sense of both. So the conclusive, official result is that I'm stable. Nothing new, no signs of progression. In other words, about as good a result I can expect outside of miraculous recovery.
I still have some things to get done before my next round, mostly getting my hands on the proper medications without having to drive half-way across the state, but otherwise it looks like I'll be starting my next cycle on schedule.
The side effects were pretty mild this time around. Some fatigue and fog, but my appetite held stable and I still haven't had to take off any work (which is fortunate, as I must admit there are days when I simply fill a desk due to aforementioned fatigue and fog). My hair seems to have stopped filling in, leaving me with a pretty significant bald patch above my left brow. I still hold out hope it'll come back in at some point but for the time being it looks like I'm keeping the bandana. There are a few products out there that can give me a closer shave than my current electric razor so maybe I'll pick up one of those and go bald. I have quite an impressive dent in my head but it's easy to overlook due to its position and angle. I must admit that I'm actually a little proud of it. What'd you do this summer? Oh, Cape Cod? Fancy! I had brain surgery. No big deal.
A new question has started to pop up more and more, one I'm going to add to the list of, "things I wish people would stop asking." This one is, "so you're done with your treatment, right?" The question is difficult and depressing to answer. I usually start out by explaining that yes, I'm done with radiation, but no, I won't be done with my treatment for about two years. Then I see their smile vanish and the, "holy shit, you still have brain cancer" return to their expression. Then I explain what 5/28 cycles are, usually without mentioning that my chemo dosage is much higher, or why they want to keep giving me chemo at all. They usually come back with nothing, or, "well you look great!" or "your color's so good!" Thanks. I'm increasingly tempted to say, "you too." People already know that I'm sarcastic but I'm increasingly aware of two things: first, that I'm a lot more familiar (and comfortable) with my cancer than most other people, and second, that never in my life have I given less of a fuck about empathy. I'm sure between that and my new tendency to draw a blank mid-sentence sometimes, a few people have come to the conclusion that I am now a bit "off." I've always been uncomfortable around people who are like that, so all I can do is hope I'm not making anyone else feel too weird. Hey, look at that! Empathy! OK, I guess I still have a little.
Anyway, to all my loyal (and not-so-loyal) readers, followers, fans and stalkers, I hope you enjoy your holiday (or lack thereof) of choice to the best of your ability.
I still have some things to get done before my next round, mostly getting my hands on the proper medications without having to drive half-way across the state, but otherwise it looks like I'll be starting my next cycle on schedule.
The side effects were pretty mild this time around. Some fatigue and fog, but my appetite held stable and I still haven't had to take off any work (which is fortunate, as I must admit there are days when I simply fill a desk due to aforementioned fatigue and fog). My hair seems to have stopped filling in, leaving me with a pretty significant bald patch above my left brow. I still hold out hope it'll come back in at some point but for the time being it looks like I'm keeping the bandana. There are a few products out there that can give me a closer shave than my current electric razor so maybe I'll pick up one of those and go bald. I have quite an impressive dent in my head but it's easy to overlook due to its position and angle. I must admit that I'm actually a little proud of it. What'd you do this summer? Oh, Cape Cod? Fancy! I had brain surgery. No big deal.
A new question has started to pop up more and more, one I'm going to add to the list of, "things I wish people would stop asking." This one is, "so you're done with your treatment, right?" The question is difficult and depressing to answer. I usually start out by explaining that yes, I'm done with radiation, but no, I won't be done with my treatment for about two years. Then I see their smile vanish and the, "holy shit, you still have brain cancer" return to their expression. Then I explain what 5/28 cycles are, usually without mentioning that my chemo dosage is much higher, or why they want to keep giving me chemo at all. They usually come back with nothing, or, "well you look great!" or "your color's so good!" Thanks. I'm increasingly tempted to say, "you too." People already know that I'm sarcastic but I'm increasingly aware of two things: first, that I'm a lot more familiar (and comfortable) with my cancer than most other people, and second, that never in my life have I given less of a fuck about empathy. I'm sure between that and my new tendency to draw a blank mid-sentence sometimes, a few people have come to the conclusion that I am now a bit "off." I've always been uncomfortable around people who are like that, so all I can do is hope I'm not making anyone else feel too weird. Hey, look at that! Empathy! OK, I guess I still have a little.
Anyway, to all my loyal (and not-so-loyal) readers, followers, fans and stalkers, I hope you enjoy your holiday (or lack thereof) of choice to the best of your ability.
Thursday, October 27, 2011
A peek inside
I'm going to make this one a bit short as the details are still murky, incomplete, and confusing.
Yesterday I had an MRI, the first since July 1st, the day after my surgery. Between then and now I've undergone thirty radiation treatments concurrent with 45 days of low-dose chemotherapy, as I've described in gripping detail.
The good news is that everything has either stabilized or improved. The greatest areas of improvement were along the corpus callosum and into my right hemisphere, which were the most delicate areas. The corpus callosum is a pretty important structure and we'd much rather keep the cancer restricted to a single hemisphere than have to deal with something transaxial. That's not to say they've completely eliminated the cancer from those regions; that much is impossible to tell.
However the parts that stabilized were the parts that gave us the most concern. My original MRI showed two areas of enhancement that lead my oncologists to believe my cancer had recently advanced to a grade 3. I mentioned this in an earlier post, how they took three weeks to do the pathology, to make absolutely sure they didn't find any grade 3 tissue, and how they didn't, but how they obviously could not test the cells that remained in my head. Well, those are the two little dots that have stabilized. They haven't grown any, but my oncologist believes they're still cancerous and still alive. And they are the most aggressive cells.
He didn't use the term "grade 3," and I don't think he would if pressed. Instead, he said he thinks that part of the tumor was in "transition." In other words, it's a grade 2 but we caught it in the middle of becoming something more aggressive. I guess that means it's a "fast" grade 2, or maybe a "slow" grade 3. A grade 2.5. Mid-grade cancer?
I'm reluctant to call this bad news because we aren't really sure what it means. It's good that it doesn't appear to have grown any but we don't know what it's going to do from here. We don't have a clear answer on how to treat it, or if we should even treat it at all. There's also a small possibility that what we saw on the MRI was an artifact left over from the radiation treatment; some sort of swelling or scarring.
We have decided on what they call a 5/28 treatment. I will take chemotherapy at twice my previous dose, for five consecutive days every month. Every month they'll check my blood and if they see any problems, they'll stop the treatment. Every other month, I get another MRI to see how things are going. This isn't an uncommon treatment, it's just not certain what sort of effect it will have on my particular cancer. It may kill the problem areas. It may do nothing at all. It may even cause me harm without any benefit whatsoever. The current plan is to do this for a full year, depending on how well I tolerate it. At that point we'll decide whether or not to do it for an additional year, but the drug manufacturer recommends against taking it longer than that.
We have no idea if this is the right thing to do. My oncologist believes it is, so for the time being I'm going to defer to his expert opinion, while I make a few calls for second opinions (this oncologist is not the one I've been working with since June, after all). He told me about a patient with GBM4, a highly aggressive form of brain cancer where life expectancy is typically measured in weeks. He said this patient had been on a 5/28 cycle for six years. The fact that this patient was able to do anything for that long seems to speak to the treatment's merit. That said, I do not have GBM4 and a single anecdote is not data.
We're all kind of flying blind here. All I can do is hope that I tolerate the chemo as well as I did last time, and just keep fighting.
We literally have no other option. We can't operate again. They're worried if they try radiation so soon after the last dose it'll cause necrosis, which can be even more dangerous than the cancer itself. It's chemo or nothing.
On the plus side, I've been told that despite my lack of 1p/19q deletion, they expect me to respond well to chemotherapy. There's a certain enzyme responsible for detecting and treating DNA damage, and mine doesn't seem to be working quite right, which I believe means my body isn't going to try to protect the cancer cells from the effects of the chemotherapy. On the other hand, had this enzyme been working properly, I might never have gotten cancer in the first place. That means I'm also more susceptible to secondaries.
I guess there isn't much point to pulling punches against the cancer that I have out of fear of a cancer that I don't. That's what I'm going to tell myself, because I really don't need to start doubting my doctors and my decisions on top of everything else.
Yesterday I had an MRI, the first since July 1st, the day after my surgery. Between then and now I've undergone thirty radiation treatments concurrent with 45 days of low-dose chemotherapy, as I've described in gripping detail.
The good news is that everything has either stabilized or improved. The greatest areas of improvement were along the corpus callosum and into my right hemisphere, which were the most delicate areas. The corpus callosum is a pretty important structure and we'd much rather keep the cancer restricted to a single hemisphere than have to deal with something transaxial. That's not to say they've completely eliminated the cancer from those regions; that much is impossible to tell.
However the parts that stabilized were the parts that gave us the most concern. My original MRI showed two areas of enhancement that lead my oncologists to believe my cancer had recently advanced to a grade 3. I mentioned this in an earlier post, how they took three weeks to do the pathology, to make absolutely sure they didn't find any grade 3 tissue, and how they didn't, but how they obviously could not test the cells that remained in my head. Well, those are the two little dots that have stabilized. They haven't grown any, but my oncologist believes they're still cancerous and still alive. And they are the most aggressive cells.
He didn't use the term "grade 3," and I don't think he would if pressed. Instead, he said he thinks that part of the tumor was in "transition." In other words, it's a grade 2 but we caught it in the middle of becoming something more aggressive. I guess that means it's a "fast" grade 2, or maybe a "slow" grade 3. A grade 2.5. Mid-grade cancer?
I'm reluctant to call this bad news because we aren't really sure what it means. It's good that it doesn't appear to have grown any but we don't know what it's going to do from here. We don't have a clear answer on how to treat it, or if we should even treat it at all. There's also a small possibility that what we saw on the MRI was an artifact left over from the radiation treatment; some sort of swelling or scarring.
We have decided on what they call a 5/28 treatment. I will take chemotherapy at twice my previous dose, for five consecutive days every month. Every month they'll check my blood and if they see any problems, they'll stop the treatment. Every other month, I get another MRI to see how things are going. This isn't an uncommon treatment, it's just not certain what sort of effect it will have on my particular cancer. It may kill the problem areas. It may do nothing at all. It may even cause me harm without any benefit whatsoever. The current plan is to do this for a full year, depending on how well I tolerate it. At that point we'll decide whether or not to do it for an additional year, but the drug manufacturer recommends against taking it longer than that.
We have no idea if this is the right thing to do. My oncologist believes it is, so for the time being I'm going to defer to his expert opinion, while I make a few calls for second opinions (this oncologist is not the one I've been working with since June, after all). He told me about a patient with GBM4, a highly aggressive form of brain cancer where life expectancy is typically measured in weeks. He said this patient had been on a 5/28 cycle for six years. The fact that this patient was able to do anything for that long seems to speak to the treatment's merit. That said, I do not have GBM4 and a single anecdote is not data.
We're all kind of flying blind here. All I can do is hope that I tolerate the chemo as well as I did last time, and just keep fighting.
We literally have no other option. We can't operate again. They're worried if they try radiation so soon after the last dose it'll cause necrosis, which can be even more dangerous than the cancer itself. It's chemo or nothing.
On the plus side, I've been told that despite my lack of 1p/19q deletion, they expect me to respond well to chemotherapy. There's a certain enzyme responsible for detecting and treating DNA damage, and mine doesn't seem to be working quite right, which I believe means my body isn't going to try to protect the cancer cells from the effects of the chemotherapy. On the other hand, had this enzyme been working properly, I might never have gotten cancer in the first place. That means I'm also more susceptible to secondaries.
I guess there isn't much point to pulling punches against the cancer that I have out of fear of a cancer that I don't. That's what I'm going to tell myself, because I really don't need to start doubting my doctors and my decisions on top of everything else.
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