Back in high school, my history teacher always used to say, "war is a game that old men play with young men's lives." I forget who he was quoting but that's not important. Regardless of the source, it feels apt given everything going on in Washington today.
Now I'm not going to get all political here. This is not the time nor the place for partisan debate. How I see it, we have a bunch of people (of both parties) who are wealthy enough that they could retire in luxury for the rest of their lives and pay for the best healthcare in the world out of pocket playing a game of chicken, where all the have to gain is some illusory and temporary sense of power. The price, however, is the well being of their constituents and employees. They have no say over this government shutdown, and they are the ones who now suffer for it.
Even so, suffering is one thing. Death is another.
One of the government facilities currently shut down is the National Institutes of Health, or the NIH. Senate has blocked a House attempt to give NIH an exemption; after all, it's not nearly so important as catching one's flight on time. There are people who cannot wait for the government to get its act together and grow up. There are people who had intended to turn to the NIH as their last hope. I'm talking about the people who are so sick that they're willing - and legally allowed - to try anything, no matter how new or experimental, because they have no alternative and they're running out of time. So while the Donkeys bray and the Elephants trumpet and nothing gets done, long-suffering people are denied their last, albeit small hope.
In other political news, Obamacare. That's about all I really know or understand about it. I've tried to educate myself and I've even spoken to an insurance representative about it but the only conclusion I've come to is that no one knows how this thing is really going to play out, and anyone who claims otherwise is probably selling something. I'm going to keep operating under the belief that I can get insurance through work and that it's going to keep getting more expensive.
And that's all I have to say on matter.
I had my MRI last week and met with Dr. C. a few days ago. Still no change, though this time the MRI technician wrote that there was no change in a slightly different way (something to do with how they see no evidence of neoplasm but can't rule it out, which has been the case for about two years now). Dr. C. had an addendum added to the report noting that yeah, nothing has changes, the MRI guy was just being weird. As Dr. C. and I chatted, the topic of conversation came to compare me to other men of my age, to which I said that most men my age don't have brain cancer. He stated, without hesitation, that neither do I. I corrected myself to say a "history" of brain cancer, but I found his objection telling and reassuring. We never really pinned down what my current status is. No one ever said "remission," though that might tie back to the MRI and the inability to scientifically rule out new growth, no matter how many sets of eyeballs look at how many pictures over how many months and conclude that those little bits of enhancement are nothing but scar tissue.
I feel like I've found a new normal for myself these days. My memory isn't as good as it used to be, nor is my vocabulary quite so available, but I now find myself somewhere in the gap between recovery and adaptation. I'm not 100%, but I'm used to not being 100% and I've found ways to cope. It's really the memory problems that bother me the most. Solving a problem can feel like fumbling with puzzle pieces, whereas once I had them all laid out before me, clearly defined and ordered. Now, when I say a problem I'm not talking about minor things like tying my shoelaces rather than more complicated tasks, like fixing a broken computer. I know that such things are beyond many people who are perfectly healthy but I'm not content with being another of the many when I have grown so accustomed to living in my own mind. When I draw a blank like that it can be frustrating but it isn't crippling or frightening. It doesn't interfere with my day to day life. That only happened once.
A woman asked me for my phone number. Nothing quite so enticing as a promise of a rendezvous to come so much as an order for take out. I know my phone number like a rhythm; I start it and it flows out of me. She tried to start it for me, but got it wrong. That wasn't my area code, and once she got that wrong, once she shook my rhythm, I drew a total blank. I had no idea what the number could possibly be. I knew there was a seven in there somewhere, but how did the rest go? For several moments I stammered and made embarrassed excuses, and tried to think of what to do. I have an account program on my phone that has the number listed, but I couldn't access that while I was having a conversation. Eventually I apologized, hung up, and looked up the number. It clicked back into place immediately. Of course that's my phone number. Of course.
I never want to feel that sense of helplessness and confusion again. I know my phone number as instinctively as my birthday. I've had it for years and it's the only one I ever use. If I could forget something so basic, what else could I forget? That incident is now months in my past, and nothing like it has happened since. Were that not the case I certainly would've gotten Dr. C.'s take on it. Maybe I should have anyway. Maybe next time.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Friday, October 4, 2013
Monday, June 17, 2013
The Two-Year Adrenaline Rush
June 17th, again. The anniversary of my diagnosis. I felt little sentiment today, though that may be in part because I felt like hell all day due to a cold. I went in to work and left a little over an hour later, after discovering that getting out of bed was probably the wrong choice. As I type this my cold still lingers. With a little luck I'll be able to sleep it off tonight. If not, I can afford to sleep in tomorrow.
So I had my routine four-month MRI, and again it came back clean, or as clean as it's going to get. It's almost certain those two little dots are scar tissue now. Or possibly very, very lazy.
Both of my parents accompanied me on my appointment, an unnecessary gesture. They always ask if I want them to come and I always express my honest indifference, but I think they interpret that as stoicism or bravery. Of course my mother also gets irritated with me when I schedule appointments to fit my schedule rather than hers. I suppose if I felt strongly enough about it I could just ask her - usually it's just her - not to come, but I worry that the ill will it may create would outweigh any minor benefit.
They also wanted to come into the exam room with me, to talk to Dr. C. We went over the usual, about how I'm recovering, and what I have done and can do in the future to help my body continue to heal and adapt. I read a news article about a study examining the body mass of marijuana users to the general population and found that they generally tend to be thinner, so I asked Dr. C. about any potential weight control benefits to the drug. He laughed for a good minute. He's heard of no such thing and said he wouldn't recommend I start taking marijuana or THC, not because he's against it but because he feels I have no need for it. Instead, he recommended more coffee, a prescription I am more than happy to fill.
I'd made a decision not to bring up my depression in front of my parents. It had subsided slightly since my last post but was still a concern, and Mom had started to have her suspicions. Perhaps that "light" in my eyes that so many people noticed has started to dim. But when Dr. C. asked if I'd like my parents to leave the room so that we might speak privately, I declined. In retrospect, I'm not certain why. Maybe some of that suspected bravery.
Now, Dr. C. has been treating cancer patients for longer than I've been alive. I don't know if I'm easy to read, or if he just has so much experience that he knows better, but he insisted they give us a few minutes. Once they were gone, I spoke with him openly and without hesitation. He did not seem surprised.
Several times during our conversation he reminded me that he is not a therapist, psychologist or psychiatrist, but what he said to me made a great deal of sense.
We've all heard the story. Car accident, child pinned in wreck, mother gets burst of strength to lift car off child, etc. Well, Dr. C. said that effect isn't limited to things so dramatic as a car accident, nor do the effects always wear off immediately. What I've been through has been, well, traumatic, physically and mentally. His theory is that I've been cruising on an adrenaline rush for the better part of two years. It makes a lot of sense. That would explain my focus and determination in fighting my disease, my quick and thorough recovery. Counter-intuitively, it might also help to explain why I've felt so calm these last two years: if I'm already running in "high gear" then wouldn't it take more of a shock to amp me any higher?
Only problem is I'm not sure if I believe it. There are reasons we aren't always high on adrenaline; reasons that mother can't flip cars whenever she feels like it. Our bodies are not made to handle that kind of stress. They'd break. Still, it's some food for thought.
He gave me the number of a local therapist that's covered by my insurance, and said (again reminding me that he is not a therapist himself) that I will likely benefit from a combination of medication and "insights." That's a nice word for it. I like it.
I'm not too crazy (poor word choice) about taking pills again. I haven't called this therapist yet, and I'm not certain when I will. I have been feeling better lately, if not as good as I'd like. I'm still on schedule at work, though my spotty update schedule on this very blog shows me that I'm still not as productive as I want to be.
So I guess that's about where I stand. Keepin' on keepin' on.
In other news, the U.S. Supreme Court ruled that companies cannot patent naturally occurring human DNA, so that's pretty neat. Sounds to me like a pretty good compromise between research for the benefit of human kind and protection of property, since altered DNA can still be patented. Also means no one can sue me for copyright infringement for replicating my own DNA without a license, and I'm all in favor of healing as a basic human right.
So I had my routine four-month MRI, and again it came back clean, or as clean as it's going to get. It's almost certain those two little dots are scar tissue now. Or possibly very, very lazy.
Both of my parents accompanied me on my appointment, an unnecessary gesture. They always ask if I want them to come and I always express my honest indifference, but I think they interpret that as stoicism or bravery. Of course my mother also gets irritated with me when I schedule appointments to fit my schedule rather than hers. I suppose if I felt strongly enough about it I could just ask her - usually it's just her - not to come, but I worry that the ill will it may create would outweigh any minor benefit.
They also wanted to come into the exam room with me, to talk to Dr. C. We went over the usual, about how I'm recovering, and what I have done and can do in the future to help my body continue to heal and adapt. I read a news article about a study examining the body mass of marijuana users to the general population and found that they generally tend to be thinner, so I asked Dr. C. about any potential weight control benefits to the drug. He laughed for a good minute. He's heard of no such thing and said he wouldn't recommend I start taking marijuana or THC, not because he's against it but because he feels I have no need for it. Instead, he recommended more coffee, a prescription I am more than happy to fill.
I'd made a decision not to bring up my depression in front of my parents. It had subsided slightly since my last post but was still a concern, and Mom had started to have her suspicions. Perhaps that "light" in my eyes that so many people noticed has started to dim. But when Dr. C. asked if I'd like my parents to leave the room so that we might speak privately, I declined. In retrospect, I'm not certain why. Maybe some of that suspected bravery.
Now, Dr. C. has been treating cancer patients for longer than I've been alive. I don't know if I'm easy to read, or if he just has so much experience that he knows better, but he insisted they give us a few minutes. Once they were gone, I spoke with him openly and without hesitation. He did not seem surprised.
Several times during our conversation he reminded me that he is not a therapist, psychologist or psychiatrist, but what he said to me made a great deal of sense.
We've all heard the story. Car accident, child pinned in wreck, mother gets burst of strength to lift car off child, etc. Well, Dr. C. said that effect isn't limited to things so dramatic as a car accident, nor do the effects always wear off immediately. What I've been through has been, well, traumatic, physically and mentally. His theory is that I've been cruising on an adrenaline rush for the better part of two years. It makes a lot of sense. That would explain my focus and determination in fighting my disease, my quick and thorough recovery. Counter-intuitively, it might also help to explain why I've felt so calm these last two years: if I'm already running in "high gear" then wouldn't it take more of a shock to amp me any higher?
Only problem is I'm not sure if I believe it. There are reasons we aren't always high on adrenaline; reasons that mother can't flip cars whenever she feels like it. Our bodies are not made to handle that kind of stress. They'd break. Still, it's some food for thought.
He gave me the number of a local therapist that's covered by my insurance, and said (again reminding me that he is not a therapist himself) that I will likely benefit from a combination of medication and "insights." That's a nice word for it. I like it.
I'm not too crazy (poor word choice) about taking pills again. I haven't called this therapist yet, and I'm not certain when I will. I have been feeling better lately, if not as good as I'd like. I'm still on schedule at work, though my spotty update schedule on this very blog shows me that I'm still not as productive as I want to be.
So I guess that's about where I stand. Keepin' on keepin' on.
In other news, the U.S. Supreme Court ruled that companies cannot patent naturally occurring human DNA, so that's pretty neat. Sounds to me like a pretty good compromise between research for the benefit of human kind and protection of property, since altered DNA can still be patented. Also means no one can sue me for copyright infringement for replicating my own DNA without a license, and I'm all in favor of healing as a basic human right.
Friday, November 30, 2012
The Importance of Tone
Before I begin, I'd like to direct your attention to today's XKCD cartoon. I think the reason why will be apparent.
So the other day I was in the cafeteria at work, making myself a cup of coffee (as is my wont), and a co-worker came in. She'd been with the company and known me since before my surgery, though she works part-time so she perhaps didn't know me as well as some others, even though we work about ten feet from one another. She started making the usual morning small talk, how are you, how was your weekend, et cetera. I responded that not a whole lot was going on, went for an MRI, just the usual. I know that for most people an MRI is kind of a huge deal but I figured everyone at work knows what's up with me, they know I get routine MRIs as part of my treatment. It seems strange, coming from a man who writes under an alias, but I am rather open about my cancer with my friends and co-workers. Not open enough, it would seem.
My co-worker looked to me with concern and asked, "oh? What's wrong? Are you OK?"
Now, I don't expect that everyone's memorized each and every step of my treatment. When I went off chemo, many people were surprised to hear I was still on it. Certainly it doesn't affect their lives in any way, that I get routine MRIs. I assumed she must have simply not known. As casually as telling her which hand I favor, I said, "I have brain cancer. I get regular MRIs to keep an eye on it and make sure it doesn't pull anything sneaky."
"I had no idea!," she replied, just as casually. We chatted a bit about that, how I had no idea she had no idea, or that anyone had no idea, wondering who else was in the dark, and then we went our separate ways. It was as though brain cancer is only serious if one speaks of it in a fittingly serious tone.
I can't say I'm disappointed. Those, "I have cancer" talks are really hard and unpleasant. Definitely not the way to start a morning. It was just so surreal to see it go over so smoothly. It's made me think about the importance of tone, and how we communicate. I wonder if she would have been more concerned had I mumbled, "we're out of creamer" in as miserable, hopeless a voice as I could muster.
Or maybe she thought I was making a really tasteless joke but didn't want to call me on it.
Either way, I am left wondering who else doesn't know. There isn't much I can do to raise awareness, if I even wished to do so. I can't send a company-wide e-mail saying, "hey guys, just a reminder, man with cancer over here!" I can't go around inserting it into casual conversation, hoping that everyone will react as well as that one co-worker. I don't really want people thinking about it. I am not my cancer. It does not define me and it does not limit me.
I guess I just don't want to have that hard conversation with anyone. I don't want to put them through it, and I don't want to put myself through it. But above all else, I don't want to surprise anyone with it. I don't want to get someone invested in me, only to feel I've presented myself falsely. My cancer is not who I am, but it is part of who I am.
Anyway, yes, I did have an MRI this month and it came back with no progression. No one has said the word "remission" to me, but from what I understand I meet all the criteria. I suppose I'm afraid to ask, should I be confronted with some technicality that means I'm not really in remission. I did get a call from my oncologist in Manhattan concurring with my local doctor's opinion that we should stop the chemo, so that, my friends, is a done deal.
Thanksgiving has come and gone - for those who may be unfamiliar with the custom, it's an annual feast where we Americans give thanks for all we have by stuffing ourselves stupid with rich, heavy foods - and my mom's been pretty enthusiastic about all the things we (by which she means I) have to be thankful for. I'm not sure how to feel about it, really. Things could be much, much worse, to be sure. I'm not going to be as dark as to say I'm still trying to fight my way back to zero after a setback as huge as cancer, as I believe my disease has helped me to grow as a person. Right now I'm as close to cancer-free as I can expect to ever be, given the level of technology I have available to me, but that's all I am: close. I'm not cured. So long as that's the case, so long as I'd trade anything for a cure, it's hard for me to feel all that thankful. It's hard for me to give thanks that a bad situation didn't get worse, no matter how glad I am that that's the case.
Maybe that appreciation that things haven't totally gone to hell is close enough. I mean, dad's turkey was pretty good this year. That's something. Right?
So the other day I was in the cafeteria at work, making myself a cup of coffee (as is my wont), and a co-worker came in. She'd been with the company and known me since before my surgery, though she works part-time so she perhaps didn't know me as well as some others, even though we work about ten feet from one another. She started making the usual morning small talk, how are you, how was your weekend, et cetera. I responded that not a whole lot was going on, went for an MRI, just the usual. I know that for most people an MRI is kind of a huge deal but I figured everyone at work knows what's up with me, they know I get routine MRIs as part of my treatment. It seems strange, coming from a man who writes under an alias, but I am rather open about my cancer with my friends and co-workers. Not open enough, it would seem.
My co-worker looked to me with concern and asked, "oh? What's wrong? Are you OK?"
Now, I don't expect that everyone's memorized each and every step of my treatment. When I went off chemo, many people were surprised to hear I was still on it. Certainly it doesn't affect their lives in any way, that I get routine MRIs. I assumed she must have simply not known. As casually as telling her which hand I favor, I said, "I have brain cancer. I get regular MRIs to keep an eye on it and make sure it doesn't pull anything sneaky."
"I had no idea!," she replied, just as casually. We chatted a bit about that, how I had no idea she had no idea, or that anyone had no idea, wondering who else was in the dark, and then we went our separate ways. It was as though brain cancer is only serious if one speaks of it in a fittingly serious tone.
I can't say I'm disappointed. Those, "I have cancer" talks are really hard and unpleasant. Definitely not the way to start a morning. It was just so surreal to see it go over so smoothly. It's made me think about the importance of tone, and how we communicate. I wonder if she would have been more concerned had I mumbled, "we're out of creamer" in as miserable, hopeless a voice as I could muster.
Or maybe she thought I was making a really tasteless joke but didn't want to call me on it.
Either way, I am left wondering who else doesn't know. There isn't much I can do to raise awareness, if I even wished to do so. I can't send a company-wide e-mail saying, "hey guys, just a reminder, man with cancer over here!" I can't go around inserting it into casual conversation, hoping that everyone will react as well as that one co-worker. I don't really want people thinking about it. I am not my cancer. It does not define me and it does not limit me.
I guess I just don't want to have that hard conversation with anyone. I don't want to put them through it, and I don't want to put myself through it. But above all else, I don't want to surprise anyone with it. I don't want to get someone invested in me, only to feel I've presented myself falsely. My cancer is not who I am, but it is part of who I am.
Anyway, yes, I did have an MRI this month and it came back with no progression. No one has said the word "remission" to me, but from what I understand I meet all the criteria. I suppose I'm afraid to ask, should I be confronted with some technicality that means I'm not really in remission. I did get a call from my oncologist in Manhattan concurring with my local doctor's opinion that we should stop the chemo, so that, my friends, is a done deal.
Thanksgiving has come and gone - for those who may be unfamiliar with the custom, it's an annual feast where we Americans give thanks for all we have by stuffing ourselves stupid with rich, heavy foods - and my mom's been pretty enthusiastic about all the things we (by which she means I) have to be thankful for. I'm not sure how to feel about it, really. Things could be much, much worse, to be sure. I'm not going to be as dark as to say I'm still trying to fight my way back to zero after a setback as huge as cancer, as I believe my disease has helped me to grow as a person. Right now I'm as close to cancer-free as I can expect to ever be, given the level of technology I have available to me, but that's all I am: close. I'm not cured. So long as that's the case, so long as I'd trade anything for a cure, it's hard for me to feel all that thankful. It's hard for me to give thanks that a bad situation didn't get worse, no matter how glad I am that that's the case.
Maybe that appreciation that things haven't totally gone to hell is close enough. I mean, dad's turkey was pretty good this year. That's something. Right?
Tuesday, October 30, 2012
Time for a New Chapter
I meant to write something about this on Wednesday, but wanted to give myself a little more time to process things. Then I tried again on Sunday for reasons that will become apparent, but Hurricane Sandy had other ideas. So now that I'm finally in front of a computer with working internet access, let me give this another shot.
On Wednesday, October 24th I had my routine pre-chemo check-in with Dr. C. As I mentioned last time, this marks one full year taking cycles of chemotherapy, a significant milestone as "one year" was the minimum recommended dosage. I hadn't brought it up lately out of fear that Dr. C. would have changed his mind, or forgotten about it entirely, or otherwise responded with anything but a, "sure, go ahead." When I saw him on the 24th, I figured there was no point in dancing around the matter and asked him directly if I could stop. He flipped through my file - now quite sizable - and casually said, "sure."
There was a little more to the discussion than that, granted, but that's how it started and proceeded along those lines, with Dr. C. giving me reasons why it would be a good idea, or at the very least, not a bad one.
So that night, I took the first dose in my last round of chemo. At least, my last round for now. There's no way to know what the future holds and I'm sure this is not the last I've seen of my cancer, but for the time being I am no longer a cancer patient, but a cancer survivor. Dr. C. wants to see me in 3 months and I'll still have my regular, bi-monthly MRIs, but no more chemo for the foreseeable future. I'm free. That was the thought going through my head on Sunday, as I prepared to take my final dose and listened to the winds of Hurricane Sandy howling outside, drawing forth all sorts of new and interesting sounds from my poor little home. I briefly entertained the thought of a tree falling through the roof, killing me on the spot. It would figure, you know?
I actually got off pretty well from the storm. I lost internet access, but my electricity and water supply held. Or at least I think it did; on the radio this morning I heard some warnings about sewer treatment plants backing up and contaminating the water supply, but the report helpfully excluded any mention on which towns were affected. I did wake up feeling a little nauseous this morning but that's hardly unusual.
We lost power at work but they'd purchased a shiny new generator after the last storm and were quite eager to try it out. My normal workstation is without power, so here I sit on a laptop. Perhaps not doing exactly what my employers intended, but something I need to do nonetheless.
On Wednesday night, near to midnight, I sat on my couch and held a letter in my hand. Three pages long and hand-written, from a dear friend from my childhood. One whom had helped to shape who I am today, but with whom I'd lost touch over a decade ago. This letter had sat, unopened and sealed, on my coffee table for over a year at that point. Every night I had looked at it, and refrained from opening it. I don't know why. Maybe the time and distance had made us strangers, or maybe I feared what emotions the letter might evoke. Maybe I felt it was something I lacked the strength to deal with, or was unwilling to face even the possibility of drawing upon emotions long buried. But as one chapter in my life drew to a close, I felt the letter an appropriate way to open the next. I wrote back to my old friend, and haven't heard from him yet. Seeing as his letter went unanswered for a year, I feel he's entitled to a little more time before I conclude he's written me off.
I'd wanted to post something about Tig Notaro, but have enough respect for the sanctity of a work computer not to go digging for a link. Suffice it to say you can find a clip of the set I am about to reference at Louis C.K.'s website, or just by Googling for her name. Short version, she's a comedian who was diagnosed with cancer, and the very next day did a routine about it. A brutally honest, open routine, in which you can hear her uncertainty, and also her desire to come to terms with her new reality. It's a beautiful set and I encourage everyone to go check it out. I'll do another post about it in a day or two, with a link.
Thank you, everyone, for taking this journey with me. I'll continue to post, maybe even more frequently as the chemo flushes from my system and my head clears. My story isn't over yet.
On Wednesday, October 24th I had my routine pre-chemo check-in with Dr. C. As I mentioned last time, this marks one full year taking cycles of chemotherapy, a significant milestone as "one year" was the minimum recommended dosage. I hadn't brought it up lately out of fear that Dr. C. would have changed his mind, or forgotten about it entirely, or otherwise responded with anything but a, "sure, go ahead." When I saw him on the 24th, I figured there was no point in dancing around the matter and asked him directly if I could stop. He flipped through my file - now quite sizable - and casually said, "sure."
There was a little more to the discussion than that, granted, but that's how it started and proceeded along those lines, with Dr. C. giving me reasons why it would be a good idea, or at the very least, not a bad one.
So that night, I took the first dose in my last round of chemo. At least, my last round for now. There's no way to know what the future holds and I'm sure this is not the last I've seen of my cancer, but for the time being I am no longer a cancer patient, but a cancer survivor. Dr. C. wants to see me in 3 months and I'll still have my regular, bi-monthly MRIs, but no more chemo for the foreseeable future. I'm free. That was the thought going through my head on Sunday, as I prepared to take my final dose and listened to the winds of Hurricane Sandy howling outside, drawing forth all sorts of new and interesting sounds from my poor little home. I briefly entertained the thought of a tree falling through the roof, killing me on the spot. It would figure, you know?
I actually got off pretty well from the storm. I lost internet access, but my electricity and water supply held. Or at least I think it did; on the radio this morning I heard some warnings about sewer treatment plants backing up and contaminating the water supply, but the report helpfully excluded any mention on which towns were affected. I did wake up feeling a little nauseous this morning but that's hardly unusual.
We lost power at work but they'd purchased a shiny new generator after the last storm and were quite eager to try it out. My normal workstation is without power, so here I sit on a laptop. Perhaps not doing exactly what my employers intended, but something I need to do nonetheless.
On Wednesday night, near to midnight, I sat on my couch and held a letter in my hand. Three pages long and hand-written, from a dear friend from my childhood. One whom had helped to shape who I am today, but with whom I'd lost touch over a decade ago. This letter had sat, unopened and sealed, on my coffee table for over a year at that point. Every night I had looked at it, and refrained from opening it. I don't know why. Maybe the time and distance had made us strangers, or maybe I feared what emotions the letter might evoke. Maybe I felt it was something I lacked the strength to deal with, or was unwilling to face even the possibility of drawing upon emotions long buried. But as one chapter in my life drew to a close, I felt the letter an appropriate way to open the next. I wrote back to my old friend, and haven't heard from him yet. Seeing as his letter went unanswered for a year, I feel he's entitled to a little more time before I conclude he's written me off.
I'd wanted to post something about Tig Notaro, but have enough respect for the sanctity of a work computer not to go digging for a link. Suffice it to say you can find a clip of the set I am about to reference at Louis C.K.'s website, or just by Googling for her name. Short version, she's a comedian who was diagnosed with cancer, and the very next day did a routine about it. A brutally honest, open routine, in which you can hear her uncertainty, and also her desire to come to terms with her new reality. It's a beautiful set and I encourage everyone to go check it out. I'll do another post about it in a day or two, with a link.
Thank you, everyone, for taking this journey with me. I'll continue to post, maybe even more frequently as the chemo flushes from my system and my head clears. My story isn't over yet.
Thursday, August 16, 2012
Nocturnal Admissions
The time is currently 4:46AM.
I woke up just a few moments ago, surprised to find myself an unwilling participant in my own dreams. Not so much dreaming unpleasantly as instead quite abruptly finding myself, in my dream, refusing to keep playing along. No longer in the mood, as it were. Possibly by presence of mind (but more likely due to whatever discomfort had spoiled my affinity for the surreal and for sleep), I awakened and tossed about for a few minutes before realizing my uncooperative attitude had followed me. Each position was less comfortable than the last. I got up out of bed, and was hit by the most intense nausea I've felt in years. As I stood in the doorway to my bathroom, insisting to myself that of all the things I was not eager to do this night, vomiting was right at the top, I wondered what in the world could be causing this.
Tonight is the first night of my 10th round of chemo. I know my way around a bottle of Temodar. I'd taken my anti-nausea Ondansetron (aka Zofran) as prescribed. I could do this in my sleep. Once my nausea had come under control I got myself a drink of water and popped another Ondansetron. It tasted of mint.
Ondansetron does not taste of mint.
Rather, a new allergy pill I'd purchased tastes of mint. I'd taken them all out of their bubble sheet and put them in an old empty pill bottle, an Ondansetron bottle, but I'd taken care to cross out the name of the drug to write, "Allergy" in pen. I'd also picked up my last refill of Ondansetron at a new pharmacy, one which used ordinary pill bottles instead of the usual, squat, over-the-counter-style bottles. I would like to take a moment to stress how important it is to know what your pills look like, and not swallow any old thing just because the bottle is the right shape and you're pretty sure you've seen that pill before somewhere.
The time is currently 4:58AM, and I'm typing this as I wait for my first Ondansetron of the night (and morning) to kick in. I should probably have a trash can or a bucket next to me but I don't. That cardboard box there will have to do. I'm already feeling better but I have no idea how this little adventure will impact work tomorrow. I was hoping to be productive. On the plus side, my sinuses are clear.
I'd like to end by sending support to Joan. Some of my regular readers may have seen her commenting on some of my posts. Her husband Duke had been battling cancer for nearly one year, and Joan had always been very willing to give support and care to his fellow patients, including myself. Sadly, Duke recently passed away. They had been married longer than I've been alive, and I feel that the breadth of their experience renders any words of comfort I can find as trite. So instead, I'll say that I'm here for you, Joan. Just as you've always been there for me.
I woke up just a few moments ago, surprised to find myself an unwilling participant in my own dreams. Not so much dreaming unpleasantly as instead quite abruptly finding myself, in my dream, refusing to keep playing along. No longer in the mood, as it were. Possibly by presence of mind (but more likely due to whatever discomfort had spoiled my affinity for the surreal and for sleep), I awakened and tossed about for a few minutes before realizing my uncooperative attitude had followed me. Each position was less comfortable than the last. I got up out of bed, and was hit by the most intense nausea I've felt in years. As I stood in the doorway to my bathroom, insisting to myself that of all the things I was not eager to do this night, vomiting was right at the top, I wondered what in the world could be causing this.
Tonight is the first night of my 10th round of chemo. I know my way around a bottle of Temodar. I'd taken my anti-nausea Ondansetron (aka Zofran) as prescribed. I could do this in my sleep. Once my nausea had come under control I got myself a drink of water and popped another Ondansetron. It tasted of mint.
Ondansetron does not taste of mint.
Rather, a new allergy pill I'd purchased tastes of mint. I'd taken them all out of their bubble sheet and put them in an old empty pill bottle, an Ondansetron bottle, but I'd taken care to cross out the name of the drug to write, "Allergy" in pen. I'd also picked up my last refill of Ondansetron at a new pharmacy, one which used ordinary pill bottles instead of the usual, squat, over-the-counter-style bottles. I would like to take a moment to stress how important it is to know what your pills look like, and not swallow any old thing just because the bottle is the right shape and you're pretty sure you've seen that pill before somewhere.
The time is currently 4:58AM, and I'm typing this as I wait for my first Ondansetron of the night (and morning) to kick in. I should probably have a trash can or a bucket next to me but I don't. That cardboard box there will have to do. I'm already feeling better but I have no idea how this little adventure will impact work tomorrow. I was hoping to be productive. On the plus side, my sinuses are clear.
I'd like to end by sending support to Joan. Some of my regular readers may have seen her commenting on some of my posts. Her husband Duke had been battling cancer for nearly one year, and Joan had always been very willing to give support and care to his fellow patients, including myself. Sadly, Duke recently passed away. They had been married longer than I've been alive, and I feel that the breadth of their experience renders any words of comfort I can find as trite. So instead, I'll say that I'm here for you, Joan. Just as you've always been there for me.
Tuesday, July 31, 2012
Comfort for a friend
Let me tell you about a friend of mine. Let's call him Bob.
I'll give you the short version. I'm not sure I have the right to give all the details. Bob has about as kind a heart as you could ask of anyone. Active in his church, always willing to help a friend, car constantly loaded with food to donate, he was the first person to offer me a ride should I need one during my radiation.
Recently, Bob found himself in the hospital. His blood work was worrying. Like, "they need to run some more tests but I think it's leukemia" worrying. He was supposed to get his results yesterday, but he didn't come in to work. I took that as a bad sign, and spent a few hours last night thinking of what I would say to him.
People always use the same metaphor, when trying to comfort the dying. "Anyone could step off the sidewalk and get run over by a truck." It's supposed to emphasize how ephemeral life is, and how no one is guaranteed as much time as they deserve. But if you step off the curb and get flattened, it's because you didn't see the truck. I see my truck coming. It's a long way off, and there isn't much I can do to get out of the way. So no, having cancer is not like getting hit by a truck, though the point does remain that people with cancer still can get hit by trucks. Just kind of assumed that wasn't really the main point since, well, no shit.
So I think having cancer is more like getting tied to the railroad tracks, like you'd see in those old Westerns. You're stuck. Death is inevitable. You can hear it coming. See it. Feel it. It's hard to judge how far away it is, but it's clear that it is on its way, and the closer it gets the more its thunderous heart shakes your body to the core. The more its call drowns out all other sound. The more real it becomes.
But you don't have to focus on the train. You can still see the clouds, and the sky, and the mountains. You can feel the breeze and the sun on your skin. You can smell blooming wildflowers and fresh grass. You can listen to rustle of the trees, and the bird songs.
And you can fight. You can struggle against your bonds. Maybe you'll break free, and even if you don't, there is something to be gained in the effort, if only the pride that comes with fighting to your last, and the inspiration that brings others.
Turns out Bob doesn't have leukemia. He's still sick, but what he has is manageable. My train metaphor no longer really applies, so I figured I'd leave it here. I kind of like it.
I'll give you the short version. I'm not sure I have the right to give all the details. Bob has about as kind a heart as you could ask of anyone. Active in his church, always willing to help a friend, car constantly loaded with food to donate, he was the first person to offer me a ride should I need one during my radiation.
Recently, Bob found himself in the hospital. His blood work was worrying. Like, "they need to run some more tests but I think it's leukemia" worrying. He was supposed to get his results yesterday, but he didn't come in to work. I took that as a bad sign, and spent a few hours last night thinking of what I would say to him.
People always use the same metaphor, when trying to comfort the dying. "Anyone could step off the sidewalk and get run over by a truck." It's supposed to emphasize how ephemeral life is, and how no one is guaranteed as much time as they deserve. But if you step off the curb and get flattened, it's because you didn't see the truck. I see my truck coming. It's a long way off, and there isn't much I can do to get out of the way. So no, having cancer is not like getting hit by a truck, though the point does remain that people with cancer still can get hit by trucks. Just kind of assumed that wasn't really the main point since, well, no shit.
So I think having cancer is more like getting tied to the railroad tracks, like you'd see in those old Westerns. You're stuck. Death is inevitable. You can hear it coming. See it. Feel it. It's hard to judge how far away it is, but it's clear that it is on its way, and the closer it gets the more its thunderous heart shakes your body to the core. The more its call drowns out all other sound. The more real it becomes.
But you don't have to focus on the train. You can still see the clouds, and the sky, and the mountains. You can feel the breeze and the sun on your skin. You can smell blooming wildflowers and fresh grass. You can listen to rustle of the trees, and the bird songs.
And you can fight. You can struggle against your bonds. Maybe you'll break free, and even if you don't, there is something to be gained in the effort, if only the pride that comes with fighting to your last, and the inspiration that brings others.
Turns out Bob doesn't have leukemia. He's still sick, but what he has is manageable. My train metaphor no longer really applies, so I figured I'd leave it here. I kind of like it.
Tuesday, July 24, 2012
Woody Roseland gets it
"When staring cancer in the face, you learn who you are." - Woody RoselandI almost feel arrogant, offering this man my approval as if I were some sort of arbiter when it comes to thoughts on cancer. He's been through it five times and it cost him a leg. Still, so much of what he says resonates with me so deeply, by its truth or by coincidence: like me, he went through his first bout with another patient who had the same diagnosis, and was also experiencing it for the first time, at the same time. Except his friend has lost his battle. Should I outlive my friend, I wonder if I'll respond to it in the same way. I wonder if I'll have that guilt and rage that, by the luck of the draw, someone with whom I shared a unique bond is dead while I am not. I wonder how Will will feel if he outlives me. The biggest difference is that Woody's friend was only 8 years old. I consider myself lucky that Will is more my age. We can communicate on a higher level, as adults. That, and I can distance myself from the fact that for as young as I may be, there are always younger patients dealt worse hands. I at least got the chance to grow up.
Woody also produced this video, aptly titled, "S#!% Cancer Patients Say." Good stuff.
Friday, June 29, 2012
One Year
The anniversary of my diagnosis came and went without much fanfare or emotion. It seems ridiculous, obscene even to say it was just another day back in 2011, when I learned that my life would never be quite the same again, but after being mired in the fallout of that day for a year, those feelings have become moot, obsolete, or otherwise rote.
Tonight has hit me harder. On June 29th, 2011, a man with a ponytail glued little foam circles to my forehead. A small child stared at me as I walked down the street. I watched a low-resolution version of Battle: Los Angeles on my hotel room's crappy TV set. I stared out my 16th floor window, across the alien landscape of Manhattan. I wrote a note on my laptop, written like a letter addressed to myself. All I could think to write was that I owed my brother a great deal. I felt like I was writing a suicide note. I knew that those could be my final hours. I might die on the table. I might become a vegetable. In all likelihood I would be impaired for the rest of my life. Would I even be able to read that note? It seemed foolish to me, to think of utility. Writing down passwords or secrets I'd memorized. Of what use are such things to the dead or the brain damaged?
It turned out that I had no use for the note. I remembered my passwords, and secrets (I think). I remembered the kindness and support of my brother. I remembered how terrible that stupid movie was, and that I slept surprisingly well that night, and that the moment I woke up in the hospital I knew where I was and why, and that I felt tired but aware, more like I'd slept hard than had a piece of my brain removed.
I never told my brother about the note or its contents. I never told anyone. As I said, it feels eerily similar to a suicide note. It's hard to start a conversation about something I wrote because I thought I was saying goodbye. Even harder to explain why my brother was the only person to merit mention. The only thing to merit mention. Maybe I'd wanted to write more but lacked the strength of will. If so, then that I do not remember.
Here I am, one year later, and oh the things I have endured. The things I have learned. It is a bittersweet victory: I have suffered the blades, the needles, the poisons, the cancer, and my own looming mortality for a year, but that is one less year that I have on this Earth. One, and I do not know how many more I have. All I know is that it's not enough, and not as many as I've a right to.
But how I have grown in this year, too. I have drawn upon strength I never knew I had. I have muscled through my long suffering with a smile and a joke. I have learned what true friendship is. I have grown closer to my family, and closer to myself. I have examined feelings I did not know I had. And yes, I have found my pain and sorrow, as well. I have shed tears of frustration, a hand to my scar, feeling how this thing has marked me. I have felt such anger against this disease, and I have allowed myself to feel that anger. I have owned it. I have left behind much of what was holding me back, physically, mentally, and emotionally.
I like myself now. I'm more content, more often than I ever was before the surgery. Smiles come easy, and I take all hardships in stride. My memory isn't as sharp as it used to be, and I still stumble over words. My old cynical self would say that I'm happier because I'm not as smart as I used to be. That's possible, I guess. If it's true, I've gained much more happiness than I've lost in intelligence.
There are worse bargains to be made, my friends.
I wonder what the next year will hold for me. I'd like to start dating, but old habits hold me back. I can use my treatment as an excuse for neglecting my bucket list (and neglecting to write one) for the last year. I don't want to have to think of an excuse as to why I've neglected it next year. I want to ask the cute lab tech to dinner. I want to travel. But if I'm really honest with myself, I've lived more in this last year than I have in the decade that came before it, and I've started to break down those bad habits. So I wonder what the next year will hold for me, and for the first time in my life, I look forward to finding out.
Thank you, dear readers, for indulging my ego over these many months. Thank you for taking this journey with me.
Tonight has hit me harder. On June 29th, 2011, a man with a ponytail glued little foam circles to my forehead. A small child stared at me as I walked down the street. I watched a low-resolution version of Battle: Los Angeles on my hotel room's crappy TV set. I stared out my 16th floor window, across the alien landscape of Manhattan. I wrote a note on my laptop, written like a letter addressed to myself. All I could think to write was that I owed my brother a great deal. I felt like I was writing a suicide note. I knew that those could be my final hours. I might die on the table. I might become a vegetable. In all likelihood I would be impaired for the rest of my life. Would I even be able to read that note? It seemed foolish to me, to think of utility. Writing down passwords or secrets I'd memorized. Of what use are such things to the dead or the brain damaged?
It turned out that I had no use for the note. I remembered my passwords, and secrets (I think). I remembered the kindness and support of my brother. I remembered how terrible that stupid movie was, and that I slept surprisingly well that night, and that the moment I woke up in the hospital I knew where I was and why, and that I felt tired but aware, more like I'd slept hard than had a piece of my brain removed.
I never told my brother about the note or its contents. I never told anyone. As I said, it feels eerily similar to a suicide note. It's hard to start a conversation about something I wrote because I thought I was saying goodbye. Even harder to explain why my brother was the only person to merit mention. The only thing to merit mention. Maybe I'd wanted to write more but lacked the strength of will. If so, then that I do not remember.
Here I am, one year later, and oh the things I have endured. The things I have learned. It is a bittersweet victory: I have suffered the blades, the needles, the poisons, the cancer, and my own looming mortality for a year, but that is one less year that I have on this Earth. One, and I do not know how many more I have. All I know is that it's not enough, and not as many as I've a right to.
But how I have grown in this year, too. I have drawn upon strength I never knew I had. I have muscled through my long suffering with a smile and a joke. I have learned what true friendship is. I have grown closer to my family, and closer to myself. I have examined feelings I did not know I had. And yes, I have found my pain and sorrow, as well. I have shed tears of frustration, a hand to my scar, feeling how this thing has marked me. I have felt such anger against this disease, and I have allowed myself to feel that anger. I have owned it. I have left behind much of what was holding me back, physically, mentally, and emotionally.
I like myself now. I'm more content, more often than I ever was before the surgery. Smiles come easy, and I take all hardships in stride. My memory isn't as sharp as it used to be, and I still stumble over words. My old cynical self would say that I'm happier because I'm not as smart as I used to be. That's possible, I guess. If it's true, I've gained much more happiness than I've lost in intelligence.
There are worse bargains to be made, my friends.
I wonder what the next year will hold for me. I'd like to start dating, but old habits hold me back. I can use my treatment as an excuse for neglecting my bucket list (and neglecting to write one) for the last year. I don't want to have to think of an excuse as to why I've neglected it next year. I want to ask the cute lab tech to dinner. I want to travel. But if I'm really honest with myself, I've lived more in this last year than I have in the decade that came before it, and I've started to break down those bad habits. So I wonder what the next year will hold for me, and for the first time in my life, I look forward to finding out.
Thank you, dear readers, for indulging my ego over these many months. Thank you for taking this journey with me.
Thursday, June 7, 2012
Now I'm not the sort to complain, but...
Thanks go out to my loyal readers, especially those who gave me some vacation advice. I'm not sure where I'm going to go but I think I'll put something together at some point, even if just to have something to look forward to. I always advocate that to other patients who come to me with questions on coping. This is unrelated to the post title, by the way, I'm not going to complain about you guys. Anyway, onward.
I really am not the sort to complain. I usually trust my doctor's word and follow his or her advice, as I think it's kind of a waste of money to go to a doctor only to ignore them. If a lab tech can't find my vein and has to dig around a bit I grin and bear it, and if they apologize I wave it off (with the arm they're not sticking) as though it's nothing, and really it isn't a big deal. So in general I have no expectations or demands as to my own comfort or preference. If I'm in pain I'll tell my doctor, but only so my doctor is aware of it as a possible symptom. If I'm worried about something I'll ask a question. Usually I won't make any demands for action. I understand that what I'm going through is not going to be fun and sometimes I need to be brave, for everyone's sake. I also have near endless sympathy for the sheer volume of bullshit most doctors must endure from all sides, and would not like to contribute to it any.
However, in my line of work I've learned to recognize patterns, and when the facts don't match the patterns, I start looking for reasons why. And yesterday, that lead me to, for the first time ever, ask a medical professional to redo a test.
Last week, my platelet count was at 83,000 per microliter: improving, but still half the minimum limit on "normal." Yesterday, they did a finger stick and it came back at 36,000 per microliter. They asked me if I've been taking my chemo (I haven't, since the reason I'd come three weeks in a row was to see if I was ready). Then they got that grave, pregnant silence a doctor gets when they don't know enough to tell you what's wrong, but none of the possibilities are good.
So I asked the lab tech if it's possible for these tests to be wrong. Brief note here; I am extremely lucky that everyone in my oncologist's office is both knowledgeable and humble enough never to take a question like that the wrong way. The tech told me that the rest of my levels looked normal so it seemed unlikely, but that she'd be happy to run the test again if I wanted. I agreed, and this time she took blood from my arm.
This wasn't the cute lab tech that usually draws my blood, however she passed by the exam room, saw me in there, and came to sit with me while I waited for the results. Very kind of her. If there are any lab techs, nurses, doctors or other medical staff reading this, do not underestimate the value of simply being there for a worried patient, even if you have no reassurances to offer.
The results came back, showing a platelet count of 158,000 per microliter. 8,000 over the minimum to be considered "normal." My doctor told me to go home and take my pills.
I'm still not the sort to complain. Sure, I now wonder about the validity of my results all the other times they ran a CBC from a finger stick, and I wonder what would have been going through my head right now had I not asked for a retest (leukemia. I'd be worried that I had leukemia), but I don't blame them for what happened. I'm not angry that I had to get stuck twice instead of just once. I'm not going to complain about something that's necessary just because it's unpleasant.
Still, if something doesn't make sense to me, I'm going to ask questions. Imprecise though it may be, medicine is a science. Every effect has a cause. As long as we can leave blame and fault out of it, looking for that cause can be to everyone's benefit.
I really am not the sort to complain. I usually trust my doctor's word and follow his or her advice, as I think it's kind of a waste of money to go to a doctor only to ignore them. If a lab tech can't find my vein and has to dig around a bit I grin and bear it, and if they apologize I wave it off (with the arm they're not sticking) as though it's nothing, and really it isn't a big deal. So in general I have no expectations or demands as to my own comfort or preference. If I'm in pain I'll tell my doctor, but only so my doctor is aware of it as a possible symptom. If I'm worried about something I'll ask a question. Usually I won't make any demands for action. I understand that what I'm going through is not going to be fun and sometimes I need to be brave, for everyone's sake. I also have near endless sympathy for the sheer volume of bullshit most doctors must endure from all sides, and would not like to contribute to it any.
However, in my line of work I've learned to recognize patterns, and when the facts don't match the patterns, I start looking for reasons why. And yesterday, that lead me to, for the first time ever, ask a medical professional to redo a test.
Last week, my platelet count was at 83,000 per microliter: improving, but still half the minimum limit on "normal." Yesterday, they did a finger stick and it came back at 36,000 per microliter. They asked me if I've been taking my chemo (I haven't, since the reason I'd come three weeks in a row was to see if I was ready). Then they got that grave, pregnant silence a doctor gets when they don't know enough to tell you what's wrong, but none of the possibilities are good.
So I asked the lab tech if it's possible for these tests to be wrong. Brief note here; I am extremely lucky that everyone in my oncologist's office is both knowledgeable and humble enough never to take a question like that the wrong way. The tech told me that the rest of my levels looked normal so it seemed unlikely, but that she'd be happy to run the test again if I wanted. I agreed, and this time she took blood from my arm.
This wasn't the cute lab tech that usually draws my blood, however she passed by the exam room, saw me in there, and came to sit with me while I waited for the results. Very kind of her. If there are any lab techs, nurses, doctors or other medical staff reading this, do not underestimate the value of simply being there for a worried patient, even if you have no reassurances to offer.
The results came back, showing a platelet count of 158,000 per microliter. 8,000 over the minimum to be considered "normal." My doctor told me to go home and take my pills.
I'm still not the sort to complain. Sure, I now wonder about the validity of my results all the other times they ran a CBC from a finger stick, and I wonder what would have been going through my head right now had I not asked for a retest (leukemia. I'd be worried that I had leukemia), but I don't blame them for what happened. I'm not angry that I had to get stuck twice instead of just once. I'm not going to complain about something that's necessary just because it's unpleasant.
Still, if something doesn't make sense to me, I'm going to ask questions. Imprecise though it may be, medicine is a science. Every effect has a cause. As long as we can leave blame and fault out of it, looking for that cause can be to everyone's benefit.
Thursday, May 24, 2012
Chemo sucks (finally)
Sorry I've been a bit absent as of late. It's been busy at work and to be honest, I just haven't wanted to think about having cancer for a while.
Last month I had my usual finger stick and my doctor informed me that my platelet count was too low to start the month's round. 53,000 per microliter (normal is about 150,000-450,000). He told me that it's nothing to worry about, no real concern, but that he wanted me to wait a week to recover before starting my next round. A week later I'd rebounded to just shy of the lower end of normal, so he gave me the go-ahead on the lower dose. It was kind of a bummer, since I'd tolerated the chemo so well for so long. My other counts (RBCs and WBCs) were fine.
How he explained it to me, when a patient takes chemo it damages their bone marrow and reduces their ability to produce blood cells. Give the body some time to recover and it can usually repair about 99% of the damage. Now, that's the number he gave me so it's what I've got to work with. I have no idea how accurate that is. So even though the body can almost completely recover, there is a small amount of permanent damage. Then next time, the patient will recover to 99% of their new normal, for a little more permanent damage, which brings them to about 98.01% of their original baseline.
The makers of Temodar suggest that patients only take it for a maximum of 2 years, regardless of its effectiveness. 24 doses means their blood's about 21.4% compromised.
I've always hated math.
I saw a series called The Unusuals on Netflix that has an interesting take on brain cancer. It's about a group of NYC detectives. It's not a particularly great show - each character basically has exactly one character trait - but one of the characters has a brain tumor and shows a lot of the same symptoms and anxieties I've seen in myself and other patients. He decides to try to ignore his tumor, because he doesn't want to end up a vegetable in a hospital even though his doctor tells him he'll be dead within months if he doesn't get it treated. Throughout the nine episodes I watched (not sure if there are any more), he suffers hallucinations, changes in his sense of taste and smell, headaches, and of course all the fear and uncertainty such a diagnosis brings. I think the show got canceled after that so I don't know if he ever does get it treated; the closest he got in the episodes I saw was sneaking into a hospital with the coroner for an MRI.
It's a good enough treatment of the disease that I wonder if it isn't based on some real life experience. Worth a watch if you have Netflix streaming and nothing better to do.
Last month I had my usual finger stick and my doctor informed me that my platelet count was too low to start the month's round. 53,000 per microliter (normal is about 150,000-450,000). He told me that it's nothing to worry about, no real concern, but that he wanted me to wait a week to recover before starting my next round. A week later I'd rebounded to just shy of the lower end of normal, so he gave me the go-ahead on the lower dose. It was kind of a bummer, since I'd tolerated the chemo so well for so long. My other counts (RBCs and WBCs) were fine.
How he explained it to me, when a patient takes chemo it damages their bone marrow and reduces their ability to produce blood cells. Give the body some time to recover and it can usually repair about 99% of the damage. Now, that's the number he gave me so it's what I've got to work with. I have no idea how accurate that is. So even though the body can almost completely recover, there is a small amount of permanent damage. Then next time, the patient will recover to 99% of their new normal, for a little more permanent damage, which brings them to about 98.01% of their original baseline.
The makers of Temodar suggest that patients only take it for a maximum of 2 years, regardless of its effectiveness. 24 doses means their blood's about 21.4% compromised.
I've always hated math.
I saw a series called The Unusuals on Netflix that has an interesting take on brain cancer. It's about a group of NYC detectives. It's not a particularly great show - each character basically has exactly one character trait - but one of the characters has a brain tumor and shows a lot of the same symptoms and anxieties I've seen in myself and other patients. He decides to try to ignore his tumor, because he doesn't want to end up a vegetable in a hospital even though his doctor tells him he'll be dead within months if he doesn't get it treated. Throughout the nine episodes I watched (not sure if there are any more), he suffers hallucinations, changes in his sense of taste and smell, headaches, and of course all the fear and uncertainty such a diagnosis brings. I think the show got canceled after that so I don't know if he ever does get it treated; the closest he got in the episodes I saw was sneaking into a hospital with the coroner for an MRI.
It's a good enough treatment of the disease that I wonder if it isn't based on some real life experience. Worth a watch if you have Netflix streaming and nothing better to do.
Friday, April 13, 2012
Testimony from a Brother in Arms
I saw this over on BoingBoing, a beautifully written account about the latest in a line of surgeries to cure a talented man of an abdominal cancer that threatened a "radical penectomy," one of the most horrifying procedures known to science. He was treated at the same facility and I, by a man whose name I recognize, and spent some time in a hospital I remember on my darkest, coldest nights. I'd recommend it to anyone who has found my own account at all interesting for whatever reason.
I've thought, from time to time, about how brain cancer stacks up to other cancers. Mainly whether it would be better to have a more embarrassing, more survivable cancer. Brain cancer is, relatively speaking, pretty dignified. Despite its high fatality rate, it's more akin to growing old before one's time. Rectal cancer or urethral cancer tend to be more survivable (though are still extremely serious, of course), but I shudder to picture the trials patients of those terrible diseases must endure. A "radical penectomy" is a real thing, and a man can live without a penis much more easily than he can without a brain. At least, physically.
Anyway, it's good to hear that Mr. Dery appears to have dodged that bullet with his member intact.
I've thought, from time to time, about how brain cancer stacks up to other cancers. Mainly whether it would be better to have a more embarrassing, more survivable cancer. Brain cancer is, relatively speaking, pretty dignified. Despite its high fatality rate, it's more akin to growing old before one's time. Rectal cancer or urethral cancer tend to be more survivable (though are still extremely serious, of course), but I shudder to picture the trials patients of those terrible diseases must endure. A "radical penectomy" is a real thing, and a man can live without a penis much more easily than he can without a brain. At least, physically.
Anyway, it's good to hear that Mr. Dery appears to have dodged that bullet with his member intact.
Thursday, March 29, 2012
Losing my Winter Coat
"Have you been shaving your hands?"
A question of profound dignity and gravitas, it was asked, as so many others, over chicken soup at my parents' house, and by my mother. A little background: ever since I became a teenager I have been, technically speaking, a pretty hairy bastard (...ladies). Not like wolf-man or Chewbacca hairy, but through a mix of genetics, heritage and skin care choices, hairy enough that had you seen me and someone were to ask you to make a statement on the hairiness of that fellow, you might use terms like, "fairly," or "relatively," or "that guy should probably shave his hands."
However, I had not, nor have I ever shaved my hands, nor are they baby-smooth at this very moment. Still, my mom was correct in her assertion that I am not as hairy as I used to be. What body hair I do have is thinner, shorter, lighter and more sparse, such that I am probably now in the, "eh, I guess" category of hairiness, rather than the "oh yes indeed" category I had long occupied.
I hadn't noticed the change before then, honestly, unless you count my concern over my eyebrow, which leads me to believe I'm losing hair all over. It would probably be pretty distressing to me had I maintained any delusions of keeping my hair, but as I haven't and shave it with the same electric razor I use on my face, I hadn't noticed any change there. My eyebrow seems to have stabilized now, so if I'm becoming slightly less of a hairy bastard due to my chemo then I'll just add that to the perks of having brain cancer (it's a short list).
Speaking of chemo, I just started round six last night. I'm pretty ready to stop taking this stuff. I'm tired of spending half of every month exhausted and foggy. I'm tired of dealing with prescription delivery services that screw up, then screw up again when they call to inform me they screwed up the first time, so that I get my pills just hours before I need to take them no matter when I call in my order. Sick and tired of being sick and tired, blah blah blah.
But hey, at least I'm not a yeti anymore.
A question of profound dignity and gravitas, it was asked, as so many others, over chicken soup at my parents' house, and by my mother. A little background: ever since I became a teenager I have been, technically speaking, a pretty hairy bastard (...ladies). Not like wolf-man or Chewbacca hairy, but through a mix of genetics, heritage and skin care choices, hairy enough that had you seen me and someone were to ask you to make a statement on the hairiness of that fellow, you might use terms like, "fairly," or "relatively," or "that guy should probably shave his hands."
However, I had not, nor have I ever shaved my hands, nor are they baby-smooth at this very moment. Still, my mom was correct in her assertion that I am not as hairy as I used to be. What body hair I do have is thinner, shorter, lighter and more sparse, such that I am probably now in the, "eh, I guess" category of hairiness, rather than the "oh yes indeed" category I had long occupied.
I hadn't noticed the change before then, honestly, unless you count my concern over my eyebrow, which leads me to believe I'm losing hair all over. It would probably be pretty distressing to me had I maintained any delusions of keeping my hair, but as I haven't and shave it with the same electric razor I use on my face, I hadn't noticed any change there. My eyebrow seems to have stabilized now, so if I'm becoming slightly less of a hairy bastard due to my chemo then I'll just add that to the perks of having brain cancer (it's a short list).
Speaking of chemo, I just started round six last night. I'm pretty ready to stop taking this stuff. I'm tired of spending half of every month exhausted and foggy. I'm tired of dealing with prescription delivery services that screw up, then screw up again when they call to inform me they screwed up the first time, so that I get my pills just hours before I need to take them no matter when I call in my order. Sick and tired of being sick and tired, blah blah blah.
But hey, at least I'm not a yeti anymore.
Thursday, March 22, 2012
What's the protocol for this?
I'd like to say that I haven't posted lately because I've been very busy but that's only a half-truth. I did have a lot on my plate, but I wasn't picking at that, either. Instead I was staring at my plate, wondering why it kept piling up and how much longer I'd have to wait before it magically resolved itself. It didn't.
I used to wonder if this kind of self-destructive behavior was rooted in questions of self-worth; if I was trying to sabotage the good in my life because I didn't feel that I deserved it. I'm not sure it's fair to pin it all to my disease either. The truth probably lies somewhere in between, as with most things. My last round of chemo hit me harder than the previous (though I think that has more to do with how hard I was pushing myself than my body simply reacting poorly) and I remained mired in a fog for weeks. I wanted to work but I couldn't. I felt physically unable to put words on the page and when I forced myself, the result was terrible and embarrassing. Nothing I'd want anyone to actually read, never mind purchase with their hard-earned money. Or, you know, department funding. Whatever. Thankfully my boss is patient and understanding enough to help me find solutions rather than point out faults, and, when necessary, light a fire under my ass. I've found my voice again and cleaned off most of my plate, so I felt it was time to check in.
I'm faced with a new question this morning. The president of the company had another sort of cancer when he was younger and feels that this is a point of connection between us, which is fine. His variety wasn't quite the same as what I had but I'm not going to turn down sympathy and compassion from the man in the big chair. This morning he sent me an e-mail on a new "cure" for brain cancer. It's a sort of supplement called "essiac tea." Well, he's the thing. Essiac tea does not cure any cancer (surprise!). In scientific trials it was shown to have no effect on cancer whatsoever until you get to large enough doses... at which point it may accelerate tumor growth or flat out kill the patient. The FDA has described it as a "fake cancer cure" and Sloan-Kettering has advised patients to "avoid" it. So when my president says, "it couldn't hurt," how do I respond?
I thank him politely, promise I'll look into it (which I have), and hope he never, ever mentions it again.
Anyone else have any similar experiences?
I used to wonder if this kind of self-destructive behavior was rooted in questions of self-worth; if I was trying to sabotage the good in my life because I didn't feel that I deserved it. I'm not sure it's fair to pin it all to my disease either. The truth probably lies somewhere in between, as with most things. My last round of chemo hit me harder than the previous (though I think that has more to do with how hard I was pushing myself than my body simply reacting poorly) and I remained mired in a fog for weeks. I wanted to work but I couldn't. I felt physically unable to put words on the page and when I forced myself, the result was terrible and embarrassing. Nothing I'd want anyone to actually read, never mind purchase with their hard-earned money. Or, you know, department funding. Whatever. Thankfully my boss is patient and understanding enough to help me find solutions rather than point out faults, and, when necessary, light a fire under my ass. I've found my voice again and cleaned off most of my plate, so I felt it was time to check in.
I'm faced with a new question this morning. The president of the company had another sort of cancer when he was younger and feels that this is a point of connection between us, which is fine. His variety wasn't quite the same as what I had but I'm not going to turn down sympathy and compassion from the man in the big chair. This morning he sent me an e-mail on a new "cure" for brain cancer. It's a sort of supplement called "essiac tea." Well, he's the thing. Essiac tea does not cure any cancer (surprise!). In scientific trials it was shown to have no effect on cancer whatsoever until you get to large enough doses... at which point it may accelerate tumor growth or flat out kill the patient. The FDA has described it as a "fake cancer cure" and Sloan-Kettering has advised patients to "avoid" it. So when my president says, "it couldn't hurt," how do I respond?
I thank him politely, promise I'll look into it (which I have), and hope he never, ever mentions it again.
Anyone else have any similar experiences?
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.
Monday, January 2, 2012
Resolutions
Without fanfare or any particular note, 2012 arrived at the Blowguns household, and nothing - save the clocks - changed.
I've never been a big fan of New Years. I like it better than the "holidays" as no one really argues about New Years. We're all in agreement that it's a time for revelry and new beginnings, with no religious context, and if you don't really care you can sit at home and not care to your heart's content. I was at my computer and noticed that it was 12:06AM. That was my celebration. No alcohol. No company. I didn't even watch the ball drop.
I did find myself thinking about resolutions. They seem so trite, now. Who cares if I lose 10 pounds? I have brain cancer. Who cares if I earn a raise at work? Brain cancer. All of the things I'd love to change are outside of my control. I can't resolve to be cancer free. I can't even resolve to have no progression over the next year. I can't resolve for science to find a cure. I can't resolve to be the object of divine intervention. I don't need to think back on 2012 next year and notice how I still have cancer, and wonder why I didn't keep the resolution to... not.
To be honest, I never really did the resolution thing. I found the tradition to be interesting and refreshingly hopeful; a big chunk of the world, time zone by time zone, promising to improve. Who cares of those promises were made in an alcoholic haze, or if they'd all be broken within a month, if not a week? That kind of joint optimism is just kind of rare these days. Still, I participated only as an observer. I felt that if I wanted to make a change in my life I didn't need to tie it to any particular date. That said, I rarely made changes in my life.
So I think I'm going to make a resolution this year. I resolve to make it to 2013. There are no indications that I'm at risk of dying in 2012 and definitely some mitigating factors beyond my control at work, but I feel like no matter what happens, I can fight my way to 2013. In 2013, I can worry about making it to 2014.
I continue to have good days and bad days. I've noticed more and more holes in my memory. Little flashes of familiarity floating, unattached. I struggle to place them in my life and find their origin but I often fail. When I succeed it's a small victory but I can't help remember a time when this was effortless to me. I would hear something once and that piece of knowledge would stick with me for years, so I could call upon it as needed. These days I'll sometimes remember something clearly and then have no idea why I believe that, or if it's even true.
That aside, my vocabulary seems to be recovering. On my good days I'm quicker with my words and they flow more naturally. It's less of a struggle to write, which is an indescribable relief. I'm not as good at spelling anymore - that used to be damn near instinctive - but what my mind lacks, technology shall provide.
I'm doing all right emotionally. No major breakthroughs nor setbacks. No waves. I haven't worried about it much as I have other things to deal with. Lately I've been hanging around the Cancer Forums (linked to the right). The support is nice, but what helps me the most is when I can help someone else. If I can ease their worries, I can ease my own. Maybe it's a bit like comforting my mother. Maybe I look to others for some sense of how I should feel, so if they are calm, I am calm.
Maybe I feel numb because I spend so much time alone.
I've never been a big fan of New Years. I like it better than the "holidays" as no one really argues about New Years. We're all in agreement that it's a time for revelry and new beginnings, with no religious context, and if you don't really care you can sit at home and not care to your heart's content. I was at my computer and noticed that it was 12:06AM. That was my celebration. No alcohol. No company. I didn't even watch the ball drop.
I did find myself thinking about resolutions. They seem so trite, now. Who cares if I lose 10 pounds? I have brain cancer. Who cares if I earn a raise at work? Brain cancer. All of the things I'd love to change are outside of my control. I can't resolve to be cancer free. I can't even resolve to have no progression over the next year. I can't resolve for science to find a cure. I can't resolve to be the object of divine intervention. I don't need to think back on 2012 next year and notice how I still have cancer, and wonder why I didn't keep the resolution to... not.
To be honest, I never really did the resolution thing. I found the tradition to be interesting and refreshingly hopeful; a big chunk of the world, time zone by time zone, promising to improve. Who cares of those promises were made in an alcoholic haze, or if they'd all be broken within a month, if not a week? That kind of joint optimism is just kind of rare these days. Still, I participated only as an observer. I felt that if I wanted to make a change in my life I didn't need to tie it to any particular date. That said, I rarely made changes in my life.
So I think I'm going to make a resolution this year. I resolve to make it to 2013. There are no indications that I'm at risk of dying in 2012 and definitely some mitigating factors beyond my control at work, but I feel like no matter what happens, I can fight my way to 2013. In 2013, I can worry about making it to 2014.
I continue to have good days and bad days. I've noticed more and more holes in my memory. Little flashes of familiarity floating, unattached. I struggle to place them in my life and find their origin but I often fail. When I succeed it's a small victory but I can't help remember a time when this was effortless to me. I would hear something once and that piece of knowledge would stick with me for years, so I could call upon it as needed. These days I'll sometimes remember something clearly and then have no idea why I believe that, or if it's even true.
That aside, my vocabulary seems to be recovering. On my good days I'm quicker with my words and they flow more naturally. It's less of a struggle to write, which is an indescribable relief. I'm not as good at spelling anymore - that used to be damn near instinctive - but what my mind lacks, technology shall provide.
I'm doing all right emotionally. No major breakthroughs nor setbacks. No waves. I haven't worried about it much as I have other things to deal with. Lately I've been hanging around the Cancer Forums (linked to the right). The support is nice, but what helps me the most is when I can help someone else. If I can ease their worries, I can ease my own. Maybe it's a bit like comforting my mother. Maybe I look to others for some sense of how I should feel, so if they are calm, I am calm.
Maybe I feel numb because I spend so much time alone.
Tuesday, December 27, 2011
Little Kindnesses
That's what the young woman at the register said to me today. She worked at a sandwich shop, one that I frequented maybe once a month, if that. It served hundreds of customers a day. Yet merely because I'd always end my order with "please" and say "thank you" whenever handed something, even my own credit card, she remembered me and appreciated how I'd treated her in the past. I was kind of stunned. I didn't think I'd done all that much; just paid her the same courtesy I pay everyone. I guess that was enough to make me stand out to her. That's a little sad, that we've fallen so far that we can't even thank a stranger providing us with a service, but it still made my day, to know that her life was one iota better because of me. And let's be clear, I'm not saying she'd be a depressed wreck were it not for my infrequent "thank yous," and when I say iota I mean the smallest degree possible. But still, better. Because she let me know about it, that made my day. Another little thing, but a small reason to feel a little better. To be honest I remembered her too, but she's usually working the register when I happen by and I haven't seen thousands of cashiers the exact same context since I last saw her. I'd noticed that she was always smiling, always cheerful, and always told me to have a great day as I left. I'd always respond with a "you too!" I thought she treated all customers like that. Maybe she does.You're always so polite! You're one of my favorite customers!
I put a lot of stake in these little things. I try to smile at people and as I said, I'm courteous to everyone I meet. Maybe it's a habit formed by my low self-esteem, a hope that I could seek approval from an unbiased party that knows nothing about me, or maybe it's just who I am. I prefer to think the latter.
Once in a theology class - stop me if you've heard this one before - a classmate asked me, "if you don't believe in God, what stops you from murdering everyone?" I resisted the overwhelming urge to cackle, "nothing," seeing as it was a class about understanding other beliefs and she had asked the question sincerely, but this is one of the most common questions the religious ask me. I explained to her the value of camaraderie, the penalties of law, and most importantly how I still have ethics and morals even if I do not take them from a particular book or fear of divine punishment. And I explained to her how the absence of God places upon us a responsibility to one another. Essentially, we need to help each other as much as we can, because no one else will. That's why I'm not holding out for a miracle - something inexplicable that would benefit only me - but for science - something understood that would benefit all. And if you're wondering why an agnostic was taking a theology class in the first place, I was taking it for the same reason as everyone else: I was sociologically interested in the various religions of the world.
That said, I really hope that girl never loses her faith, because if she does, yikes.
(It's my belief that the religious do have ethics and morals that are independent from their code of religious beliefs but that religion is the most obvious and immediately recognizable codification of those morals, and so few feel the need to examine it much further than that.)
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.
Monday, December 19, 2011
Snake Oil
Don't eat and don't breathe. That seems to be what the quacks are telling me these days.
They point out that cancer needs nutrients to grow. They point out that oxygen produces free radicals, which cause DNA damage. Both are true, but what's to be done about either? It's like saying I can prevent excessive bleeding by draining all my blood on a daily basis; it might work but it would kill me first. I guess that's why they can claim it cures all forms of cancer; technically it does, along with every other physical, mental and social ill I may have for the rest of eternity. Then they tout all sorts of all natural things I can put in my body to do... something. Something magical. They talk like cancer itself is a toxin and that carcinogens contain that toxin, so that if I have cancer I can somehow starve it by no longer ingesting these carcinogens.
I don't know if these people are naive or cruel. I like to think they're naive but some have made a career of it. Dr. Oz is a monster. It's one thing to peddle sunflower seeds as a way to reduce wrinkles or whatever such nonsense but it is beyond irresponsible to offer a cancer patient an "alternative cure." All it does is encourage them to forgo potentially life-saving treatment in favor of something that has never worked and will never work.
It's hard, when you have cancer and when someone who loves you believes the pseudoscience. They send you these articles about these miracle cures. They do it because they love you and want to help you. They lie to themselves, and take false hope and false comfort in those lies.
And you, for that split second, before you realize what you're looking at... you share that hope. That animal part of you, the one who just wants this all to go away, sees that someone is offering a cure. Someone is offering a way to make it all go away, and no matter how well-educated you are, or how much you know, or even if you can immediately recognize a hoax, it still stings. The lie speaks to a place more primal than logic or education. The place that can make a grown man as helpless as a child, literally crying for his mommy, or alternatively, react entirely on adrenaline, faster and stronger than he ever could be were he thinking at all clearly.
So my soul is stirred in that fraction of a second. It feels hopeful.
Then the hope is immediately crushed, because it is a false hope. It is a cruel hope, peddled by the heartless who know that so many are so desperate to keep hoping, and keep watching, and keep drawing those precious advertiser dollars. Even though I don't believe in the hope for even an instant, it still cuts me deep. It is an offense.
For while my family may send me a message because they love me and want me to be well, the message reads, "I don't care if you die in agony as long as I'm financially successful."
And that, I cannot abide.
They point out that cancer needs nutrients to grow. They point out that oxygen produces free radicals, which cause DNA damage. Both are true, but what's to be done about either? It's like saying I can prevent excessive bleeding by draining all my blood on a daily basis; it might work but it would kill me first. I guess that's why they can claim it cures all forms of cancer; technically it does, along with every other physical, mental and social ill I may have for the rest of eternity. Then they tout all sorts of all natural things I can put in my body to do... something. Something magical. They talk like cancer itself is a toxin and that carcinogens contain that toxin, so that if I have cancer I can somehow starve it by no longer ingesting these carcinogens.
I don't know if these people are naive or cruel. I like to think they're naive but some have made a career of it. Dr. Oz is a monster. It's one thing to peddle sunflower seeds as a way to reduce wrinkles or whatever such nonsense but it is beyond irresponsible to offer a cancer patient an "alternative cure." All it does is encourage them to forgo potentially life-saving treatment in favor of something that has never worked and will never work.
It's hard, when you have cancer and when someone who loves you believes the pseudoscience. They send you these articles about these miracle cures. They do it because they love you and want to help you. They lie to themselves, and take false hope and false comfort in those lies.
And you, for that split second, before you realize what you're looking at... you share that hope. That animal part of you, the one who just wants this all to go away, sees that someone is offering a cure. Someone is offering a way to make it all go away, and no matter how well-educated you are, or how much you know, or even if you can immediately recognize a hoax, it still stings. The lie speaks to a place more primal than logic or education. The place that can make a grown man as helpless as a child, literally crying for his mommy, or alternatively, react entirely on adrenaline, faster and stronger than he ever could be were he thinking at all clearly.
So my soul is stirred in that fraction of a second. It feels hopeful.
Then the hope is immediately crushed, because it is a false hope. It is a cruel hope, peddled by the heartless who know that so many are so desperate to keep hoping, and keep watching, and keep drawing those precious advertiser dollars. Even though I don't believe in the hope for even an instant, it still cuts me deep. It is an offense.
For while my family may send me a message because they love me and want me to be well, the message reads, "I don't care if you die in agony as long as I'm financially successful."
And that, I cannot abide.
Monday, December 12, 2011
MRI Results
I had my MRI on Friday, a somewhat different and less pleasant experience than my previous MRIs. It was my first time at that particular facility and I think they may have been using a more powerful magnet (3.0 Tesla as opposed to 1.5 Tesla), which necessitated more arduous safety protocol (triple word score!). Instead of taking away my cell phone and telling me to have at it, they required me to change into a hospital gown. I could keep my underwear and my bandana but that was it, and I declined on the bandana since I'd really rather not spend 40 minutes resting my head on a knot.
On to the important part. I won't have the official word for another day or two, but Dr. C. called me the same night, after office hours, to tell me that... everything looks fine. From a quick once-over, he said it actually looks pretty good and didn't see anything new to worry about. He went out of his way to call me because he's dedicated, not because there was anything that needed immediate attention. I'm going to swing by his office today to drop off some copies of my earlier MRIs; I tried to give them to the MRI operators but they didn't want them. Some question of providence, I guess. They said they'd get them directly from the other facilities. Dr. C. seemed surprised by that and requested I bring the discs to his office.
My appetite's held pretty stable, though I have forgotten to eat a few times over the last several days. My energy level, not so much. I felt OK on Friday but was told I looked pretty bad, while on Sunday I felt much worse and was told my color had improved since Friday. It's kind of annoying that my physical state shows that much in my face, especially when it doesn't always match how I feel. I sort of wish people would stop talking about my color. I know that the implication isn't, "you're really sick so I'm amazed you almost look healthy!" so much as, "the other day you looked like hell but I didn't want to say anything and I'm glad you're doing better now."
I'm still not totally devoid of symptoms. That tiny burn mark remains in the center of my left field of vision, still so small I only notice it when I isolate it within the body of a single character of text. I'm not sure I'll ever be rid of that. The eyestrain's getting kind of bad, too. I really need to get some glasses already, as I have more than a year now. My hands were trembling again on Friday and my mother noticed, so it's unfortunately not just my imagination. They haven't given me any trouble since, but I really hope this is just a passing symptom. I spend all day typing. My hands are my livelihood. At least they usually are. I've been wandering through a patch of chemo fog and the words aren't flowing, even by their new, lower, standard. Hopefully this post will act as something of a writing exercise and throw some grease on those gears.
On to the important part. I won't have the official word for another day or two, but Dr. C. called me the same night, after office hours, to tell me that... everything looks fine. From a quick once-over, he said it actually looks pretty good and didn't see anything new to worry about. He went out of his way to call me because he's dedicated, not because there was anything that needed immediate attention. I'm going to swing by his office today to drop off some copies of my earlier MRIs; I tried to give them to the MRI operators but they didn't want them. Some question of providence, I guess. They said they'd get them directly from the other facilities. Dr. C. seemed surprised by that and requested I bring the discs to his office.
My appetite's held pretty stable, though I have forgotten to eat a few times over the last several days. My energy level, not so much. I felt OK on Friday but was told I looked pretty bad, while on Sunday I felt much worse and was told my color had improved since Friday. It's kind of annoying that my physical state shows that much in my face, especially when it doesn't always match how I feel. I sort of wish people would stop talking about my color. I know that the implication isn't, "you're really sick so I'm amazed you almost look healthy!" so much as, "the other day you looked like hell but I didn't want to say anything and I'm glad you're doing better now."
I'm still not totally devoid of symptoms. That tiny burn mark remains in the center of my left field of vision, still so small I only notice it when I isolate it within the body of a single character of text. I'm not sure I'll ever be rid of that. The eyestrain's getting kind of bad, too. I really need to get some glasses already, as I have more than a year now. My hands were trembling again on Friday and my mother noticed, so it's unfortunately not just my imagination. They haven't given me any trouble since, but I really hope this is just a passing symptom. I spend all day typing. My hands are my livelihood. At least they usually are. I've been wandering through a patch of chemo fog and the words aren't flowing, even by their new, lower, standard. Hopefully this post will act as something of a writing exercise and throw some grease on those gears.
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