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.
Wednesday, February 29, 2012
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, February 2, 2012
Smooth Sailing
I had a visit with Dr. C. yesterday and got the all-clear to start my chemo. Not a whole lot has changed since last time. My blood counts are still great, I'm still tolerating the chemo well, no particularly alarming changes. All the same, I'm scheduled for my bi-monthly MRI next week just to make absolutely sure everything's behaving as it should. Except, of course, for that pain in my side.
Dr. C. gave me a physical exam and asked plenty of questions about the kind of pain I felt, when I felt it, what I could do to cause or alleviate it, and how much of a problem it was. He concluded, with a reassuring confidence, that nothing's wrong. He's sure that the pain is skeletal or muscular and felt no abnormalities along the edge of my ribcage, where I feel the pain. He thinks that there may be an old injury or a flaw in the cartilage somewhere and that neither is anything to be worried about. The fact that I'm feeling it now could be due to my sedentary line of work and my posture while sitting, and he suggests I get more exercise. It's entirely possible that what I perceived as swelling along my flank is actually from losing weight adjacent to that area. Even though he's absolutely sure there's nothing to worry about, he told me he could get me a CAT scan if only to put my mind at ease. I haven't taken his offer yet as I'd like to speak with my endocrinologist first (though Dr. C. is certain my symptoms are not glandular or internal).
I feel confident in his skill as a physician, and in his diagnosis. I'll have to wait and see just how much that small bit of uncertainty gnaws at me before I make my decision on that scan. I think I'm going to wait to see if it gets any better or worse as I follow some of his recommendations. Even if the intermittent pain never goes away, I can live with that. Just so long as it's not something we need to address RTFN.
Dr. C. gave me a physical exam and asked plenty of questions about the kind of pain I felt, when I felt it, what I could do to cause or alleviate it, and how much of a problem it was. He concluded, with a reassuring confidence, that nothing's wrong. He's sure that the pain is skeletal or muscular and felt no abnormalities along the edge of my ribcage, where I feel the pain. He thinks that there may be an old injury or a flaw in the cartilage somewhere and that neither is anything to be worried about. The fact that I'm feeling it now could be due to my sedentary line of work and my posture while sitting, and he suggests I get more exercise. It's entirely possible that what I perceived as swelling along my flank is actually from losing weight adjacent to that area. Even though he's absolutely sure there's nothing to worry about, he told me he could get me a CAT scan if only to put my mind at ease. I haven't taken his offer yet as I'd like to speak with my endocrinologist first (though Dr. C. is certain my symptoms are not glandular or internal).
I feel confident in his skill as a physician, and in his diagnosis. I'll have to wait and see just how much that small bit of uncertainty gnaws at me before I make my decision on that scan. I think I'm going to wait to see if it gets any better or worse as I follow some of his recommendations. Even if the intermittent pain never goes away, I can live with that. Just so long as it's not something we need to address RTFN.
Wednesday, February 1, 2012
Hope, Fear, Integrity and PR
Lately I've had cause to spend a little time thinking about alternative treatments. Not for myself, but because I've been asked for my opinion about one in particular. I'm not going to rail against them again as I've made my stance abundantly clear: they're harmless at best and criminal at worst.
Rather than sit here and fume about the cruelty of these self-proclaimed "renegades," fighting the "corrupt mainstream medical conspiracy," I've wondered why they seem to get so much traction. I think it's more than simply offering a cure to the desperate, in part because the individual asking me my opinion seemed to already have a quite skilled doctor. From what I understand of this patient's diagnosis, their prognosis is about as good as it gets when it comes to brain cancer. Low-grade, very little enhancement, no progression... Controlled. Even so, they came away with the impression that their doctor told them to go home and quietly die if they so please. Their doctor may be skilled, but not terribly personable. They were so frightened they didn't want to get a second opinion out of an unwarranted certainty that the next doctor would give them even worse news, or insist they go through radiation or chemotherapy. So they asked me what I thought about Burzynski. And I told them. At length. I was less than complimentary and at one point I think I may have wished cancer upon Burzynski himself.
That kind of heat is pretty rare from me, but I'd like to think it came from a good place. I was not angry at Burzynski for lying (I mean, I am, but that's not where I was coming from at the time). I was worried about the other patient, and that they might put their health at risk chasing a false hope even though - as shown by yesterday's post - there are plenty of real reasons to have hope. I was worried that Burzynski's unsupported optimism would overcome their doctor's unwarranted pessimism.
So what is it that makes a false cure more appealing than a real one?
For one, lies are a lot more flexible than truths. Everyone peddling an alternative medicine can twist (or outright forge) figures to make their product look like a miracle cure. It's easy to say that their treatment works so well that it constitutes an existential threat to modern medicine itself. Crying conspiracy is a very useful tact: any lack of evidence or any evidence to the contrary can be dismissed as part of the conspiracy. We see it in politics all the time. Meanwhile, legitimate doctors with legitimate treatments are constrained by these little annoying things we call "facts," and when it comes to brain cancer, the facts aren't too pretty. They used to offer no real hope at all. Even today, that hope is slim and preliminary. Except it's real, and that's the important part.
There's also the matter of what drives people to become con artists, what drives people to become doctors, and what makes someone a leading con artist or a leading doctor. The most famous con artists are the best liars. The ones who make the biggest promises, who assemble the best false evidence, and the biggest followings of supporters who are so desperate to believe, they will fight that con artist's battles for them. I'm sure if Burzynski's followers find this post we'll see an excellent example of that. I sometimes wonder if the cons believe their own con; if they are not liars but are simply deluded. I'd really like to think that. But whether they are lying to themselves or to others, the hallmark of a great con artist is appealing to their target. They are salesmen. Selling is what they do best.
A medical researcher has no such aspirations. They deal in facts and speak factually, even when the facts seem grim. They build a career by doing good science, not by sales figures. They build a reputation among other scientists, who know that reality is not determined by popular opinion. People who know that, if every man, woman and child on the planet holds a false belief, that belief remains false. That 7,000,000,000 people can be wrong. Sure, bedside manner is important and I've found that the best doctors not only know their facts but can also relate them to their patients, but a doctor who gives you the wrong information in a gentle way is not a good doctor. First and foremost, we want our doctors to be right.
Even when the truth is terrible.
Rather than sit here and fume about the cruelty of these self-proclaimed "renegades," fighting the "corrupt mainstream medical conspiracy," I've wondered why they seem to get so much traction. I think it's more than simply offering a cure to the desperate, in part because the individual asking me my opinion seemed to already have a quite skilled doctor. From what I understand of this patient's diagnosis, their prognosis is about as good as it gets when it comes to brain cancer. Low-grade, very little enhancement, no progression... Controlled. Even so, they came away with the impression that their doctor told them to go home and quietly die if they so please. Their doctor may be skilled, but not terribly personable. They were so frightened they didn't want to get a second opinion out of an unwarranted certainty that the next doctor would give them even worse news, or insist they go through radiation or chemotherapy. So they asked me what I thought about Burzynski. And I told them. At length. I was less than complimentary and at one point I think I may have wished cancer upon Burzynski himself.
That kind of heat is pretty rare from me, but I'd like to think it came from a good place. I was not angry at Burzynski for lying (I mean, I am, but that's not where I was coming from at the time). I was worried about the other patient, and that they might put their health at risk chasing a false hope even though - as shown by yesterday's post - there are plenty of real reasons to have hope. I was worried that Burzynski's unsupported optimism would overcome their doctor's unwarranted pessimism.
So what is it that makes a false cure more appealing than a real one?
For one, lies are a lot more flexible than truths. Everyone peddling an alternative medicine can twist (or outright forge) figures to make their product look like a miracle cure. It's easy to say that their treatment works so well that it constitutes an existential threat to modern medicine itself. Crying conspiracy is a very useful tact: any lack of evidence or any evidence to the contrary can be dismissed as part of the conspiracy. We see it in politics all the time. Meanwhile, legitimate doctors with legitimate treatments are constrained by these little annoying things we call "facts," and when it comes to brain cancer, the facts aren't too pretty. They used to offer no real hope at all. Even today, that hope is slim and preliminary. Except it's real, and that's the important part.
There's also the matter of what drives people to become con artists, what drives people to become doctors, and what makes someone a leading con artist or a leading doctor. The most famous con artists are the best liars. The ones who make the biggest promises, who assemble the best false evidence, and the biggest followings of supporters who are so desperate to believe, they will fight that con artist's battles for them. I'm sure if Burzynski's followers find this post we'll see an excellent example of that. I sometimes wonder if the cons believe their own con; if they are not liars but are simply deluded. I'd really like to think that. But whether they are lying to themselves or to others, the hallmark of a great con artist is appealing to their target. They are salesmen. Selling is what they do best.
A medical researcher has no such aspirations. They deal in facts and speak factually, even when the facts seem grim. They build a career by doing good science, not by sales figures. They build a reputation among other scientists, who know that reality is not determined by popular opinion. People who know that, if every man, woman and child on the planet holds a false belief, that belief remains false. That 7,000,000,000 people can be wrong. Sure, bedside manner is important and I've found that the best doctors not only know their facts but can also relate them to their patients, but a doctor who gives you the wrong information in a gentle way is not a good doctor. First and foremost, we want our doctors to be right.
Even when the truth is terrible.
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