I've made no secret of the fact that I've never taken comfort in the platitude so often given to cancer patients that anyone could die any day, that they could step off the curb and get run down by a truck without notice.
So the other day I was driving home from work. What I noticed first was the truck's speed. A bright red pickup truck, I noticed it because it was going so fast. My first thought, "wow that guy's moving." My second thought was, "he is entirely in my lane."
He swerved to avoid the car in front of me, and would have stuck it head on had it not done the same. He was moving so fast that it wasn't until he was already gone that I realized what had happened, and that I could feel my heart pounding, my pulse racing. He must have been going over 100mph. Had he hit me dead on, there is no chance I would have survived. The same could be said for the car in front of me. I played through the possible scenarios the rest of the ride home. What I would have done had he struck me but not killed me. Whom I would have called first. Or if he'd struck the car in front of me.
But he didn't. He just kept on driving. I'm not normally the sort to hold grudges but I admit to looking for red pickups on my way to and from work since then. Once you start looking, they're everywhere. One belongs to a co-worker but is the wrong shade, and much older. Another looked about right and is an emergency vehicle - which would explain the speed - but they weren't going code the day of the "near-incident." At least a dozen others, scattered about in random driveways and parking lots. There's no sense to looking, yet still I look.
Anyway, none of that explains why I haven't posted in so long. The reasons are two-fold, the first being that I've felt unusually withdrawn lately. I haven't felt inclined to write, not here or elsewhere, or partake in most of my other usual hobbies and interests. I've wanted the world to just leave me alone for a time, but as the days turned to weeks I came to recognize this as depression rearing its ugly head again. I'm not sure what to do about it, but it was confirmed last week when I went to visit my parents and my mother asked me, seemingly out of the blue, if I was feeling depressed again. She said I'd seemed sad, though I'd done my best to be pleasant for them. I had a minor headache, I said, which was true. She let it go but didn't buy it.
The truth is that I don't see the point in telling her. If I do, she'll just tell me what she thinks I ought to do and then ask me every few days if I've done it yet. Our relationship is much better since before my diagnosis but I really don't need that. I don't need yet another task on my list, or another way in which I am not living up to her expectations. I know there's no shame in seeking help, and if I don't find my way out of this funk on my own by June I'll do something about it. That way I'll at least have a better idea if it's the cancer playing tricks on me again.
The second reason is that I caught word of a crackdown at work, where they're going to start monitoring internet usage quite closely, and restrict it to only things related directly to work. While they've had plenty of sympathy for me, they don't pay me to write a cancer blog. Not to mention I use an alias on this blog so that I don't have to censor myself, which I most certainly would were my boss reading it with full knowledge of who I am. So whereas I used to do most of my writing at work, I now have to wait until I get home, at which point I've usually lost my muse or decided it's far too easy to just put it off until tomorrow (and tomorrow, and tomorrow).
My muse seems to have found me, which is why I'm now up passed my bedtime writing a long overdue post. One that's costing me sleep I will doubtlessly miss come tomorrow morning. I don't think I've made any breakthroughs tonight but just the same, I'm glad I wrote it. I felt, finally, that it was something I could no longer defer. For this exercise, my sleep will be shorter, but maybe it will also be more sound.
Sunday, April 14, 2013
Wednesday, February 20, 2013
Coping with Survival
I have become comfortable with the idea of a truncated life.
That I will likely live to 35 but not 40 no longer frightens me as much as it once did. It's something I've come to terms with. Call it acceptance, denial or fatigue, as I'm not sure if it's one or the other or maybe all three. But now I have a new challenge, and part of that challenge is that I feel like an arrogant asshole for calling it a challenge instead of simply reveling in it. Some of this post is going to sound like fishing so please don't think I'm looking for comfort or reassurances. I'm just sorting through some strange thoughts (as usual).
So I had that appointment with my doctor a while back, and I apologize to those of you who have been waiting to hear how it went. Work's been a bit busy as of late, and that must come first.
It started with Dr. C. entering the office with a man I'd never seen before, also in a white coat. My mother was sitting beside me and I could feel her tense with confusion, wondering - as was I - if this new man was a specialist come to deliver some bad news. Maybe to introduce himself, as things had gone so wildly out of control that Dr. C. could no longer handle them. Dr. C. seemed to pick up on that quickly and interrupted himself to introduce the man as a student come to observe, and then assured me that my MRIs were "perfect." He then ran me through the usual neurological tests, and again expressed true confusion as to how I could be doing so well. My balance and coordination are flawless.
And then he said something that I kind of wish I didn't hear. He said that I might be done with cancer. Forever.
You see, contrary to popular belief, when a cancer survivor is in remission, it does not become more likely that the cancer will start growing again over time. It becomes less likely. I've gone a year and a half without any signs of growth or recurrence of symptoms, and he sees no reason to believe that is going to change.
I don't know how to feel about that. My mother was overjoyed, of course, and over the next few days I received congratulations from various relatives, but I didn't feel any of that elation myself. I'm not ready to believe it, even as a possibility. I've spent so much time coming to terms with my mortality, I'm afraid to believe that I'm actually out of the woods. I'm afraid that Dr. C. might be wrong, and I don't want to have to fight that battle against despair again. This productive nihilism of mine works pretty well for me.
I'm quick to say that I am not my disease, but it's still part of me. Even on the outside chance that I really am cancer free, I'm going to have to get MRIs every four months, either for the rest of my life or until they come up with a way to be absolutely sure. It sounds sick, but I wonder if part of me even likes that I have cancer. It gives me a sort of authority, or even immunity. I've fought it, and people recognize that and tell me how much they admire my strength. I get plenty of e-mails from people seeking guidance or a sympathetic ear.
And let's get one thing straight, I've spoken to people who started out in a better place than I, but have ended up in a worse place. We didn't catch my cancer early. It wasn't in a "good" place. It wasn't small or well-defined. It even looked like it was becoming more aggressive. So here comes that question of "why me," once again. Not, "why did I get this," but, "why might I have beaten it when others didn't?" I guess it all comes back to the wise words of Woody Roseland. There is no why, when it comes to cancer. I'm not doing well because I fought harder, or because of some strength of character that I have and others lack. I'm doing well because cancer is random. It's like a tornado. A tornado spares some people. Others, it kills. There are things you can do to improve your odds but it's ultimately up to chance. For the time being, I've been very lucky and I kind of feel like an ass by offering advice to those who haven't.
That I will likely live to 35 but not 40 no longer frightens me as much as it once did. It's something I've come to terms with. Call it acceptance, denial or fatigue, as I'm not sure if it's one or the other or maybe all three. But now I have a new challenge, and part of that challenge is that I feel like an arrogant asshole for calling it a challenge instead of simply reveling in it. Some of this post is going to sound like fishing so please don't think I'm looking for comfort or reassurances. I'm just sorting through some strange thoughts (as usual).
So I had that appointment with my doctor a while back, and I apologize to those of you who have been waiting to hear how it went. Work's been a bit busy as of late, and that must come first.
It started with Dr. C. entering the office with a man I'd never seen before, also in a white coat. My mother was sitting beside me and I could feel her tense with confusion, wondering - as was I - if this new man was a specialist come to deliver some bad news. Maybe to introduce himself, as things had gone so wildly out of control that Dr. C. could no longer handle them. Dr. C. seemed to pick up on that quickly and interrupted himself to introduce the man as a student come to observe, and then assured me that my MRIs were "perfect." He then ran me through the usual neurological tests, and again expressed true confusion as to how I could be doing so well. My balance and coordination are flawless.
And then he said something that I kind of wish I didn't hear. He said that I might be done with cancer. Forever.
You see, contrary to popular belief, when a cancer survivor is in remission, it does not become more likely that the cancer will start growing again over time. It becomes less likely. I've gone a year and a half without any signs of growth or recurrence of symptoms, and he sees no reason to believe that is going to change.
I don't know how to feel about that. My mother was overjoyed, of course, and over the next few days I received congratulations from various relatives, but I didn't feel any of that elation myself. I'm not ready to believe it, even as a possibility. I've spent so much time coming to terms with my mortality, I'm afraid to believe that I'm actually out of the woods. I'm afraid that Dr. C. might be wrong, and I don't want to have to fight that battle against despair again. This productive nihilism of mine works pretty well for me.
I'm quick to say that I am not my disease, but it's still part of me. Even on the outside chance that I really am cancer free, I'm going to have to get MRIs every four months, either for the rest of my life or until they come up with a way to be absolutely sure. It sounds sick, but I wonder if part of me even likes that I have cancer. It gives me a sort of authority, or even immunity. I've fought it, and people recognize that and tell me how much they admire my strength. I get plenty of e-mails from people seeking guidance or a sympathetic ear.
And let's get one thing straight, I've spoken to people who started out in a better place than I, but have ended up in a worse place. We didn't catch my cancer early. It wasn't in a "good" place. It wasn't small or well-defined. It even looked like it was becoming more aggressive. So here comes that question of "why me," once again. Not, "why did I get this," but, "why might I have beaten it when others didn't?" I guess it all comes back to the wise words of Woody Roseland. There is no why, when it comes to cancer. I'm not doing well because I fought harder, or because of some strength of character that I have and others lack. I'm doing well because cancer is random. It's like a tornado. A tornado spares some people. Others, it kills. There are things you can do to improve your odds but it's ultimately up to chance. For the time being, I've been very lucky and I kind of feel like an ass by offering advice to those who haven't.
But people keep contacting me, including a friend I've known
for years who was recently diagnosed. If
they find my counsel valuable, I certainly won't turn them away.
On that note, I want to remind you, dear reader, that I keep
my e-mail on this page for a reason.
Please don't hesitate to contact me if you'd like, even if you just want
to vent or chat. I do get caught up in
work from time to time but I'll always write back eventually and I make it a
point to respond to introductory e-mails ASAP.
Speaking of which, I have two links for you all today. The first comes from Cameron Von St. James,
the husband of mesothelioma survivor Heather Von St. James. I've linked to his post on anger, which I
found particularly insightful. Cameron
provides a perspective that I cannot – that of a husband, father and caregiver –
and so when he approached me about linking to his blog, I had no reservations
about helping to spread the word. I found it interesting and hope that you'll all take a look.
The second comes from a fellow brain cancer patient, Ozman, who
was recently diagnosed. I suggested he
start a blog and he took that recommendation to heart. I suppose I should let him take it from there.
As for me, I guess I'll just keep doing what I've been doing. It's worked out pretty OK so far, and as far as predicaments go, this one's way better than the previous one. Fellow fighters, if presented with the opportunity to (possibly) not have cancer, I strenuously encourage you to take it.
Tuesday, January 29, 2013
Two months out
It's now been three months without chemo, or two months out from the end of my last cycle. I continue to improve, though I'm starting to get a feel for my new normal; not as productive or sharp as I once was, but more productive, sharper, and more creative on average than I've felt for over a year. Last night I awoke with a fascinating idea for a story kicking around in my head. Maybe it's time for a new project.
Yesterday I had an MRI, and this Thursday I have a follow-up appointment with Dr. C. I presume that is when I shall discover if going off the chemo has had any negative consequences, though I don't imagine it will. I don't feel anything that leads me to suspect any regrowth or complications. I haven't heard from Dr. C. yet as I might had the MRI shown anything particularly bad, but he doesn't work on Mondays or Tuesdays so maybe he hasn't had a chance to take a look just yet. Either way, not something I intend to lose any sleep over. One of these days, after an MRI much like yesterday's, I will hear some bad news. Maybe that day will be Thursday and maybe not. When it happens, I'll review the situation and we'll all figure out where to go from there. Until then, no sense obsessing over it.
I know that I got lucky with my first operation. It had an impact, sure, but I can still write. I can still live my life. But what about the next time? What if they have to go back into my head and remove more of my brain? Can I roll the dice twice? Is there any chance I could get through a second operation as cleanly as the first?
I have so many stories I'd like to tell. I do not feel my death hanging over me, but it seems closer on the horizon. I will not die today, but I know I will not live long enough to tell all of my stories to my satisfaction. Yet even with that thought, one that might drive me to hours, even days of steady writing in the past, I find so little time to do more than what is required of me. I tell boring stories all day at work, for people who don't much care about the ending. They contain no twists nor turns. Interesting characters are few and far between, anomalies often swallowed by predictability. Rivalries are dulled by bureaucracy and legalese, and the outcome is always the same, time and time again.
I don't think a vacation would quite do the trick. Were I wealthy enough to retire, then maybe I could focus more on telling the stories I'd like to tell. But who couldn't use a little more money, especially in this economy?
Maybe I'll continue to improve, and be able to spend more time writing for myself. Even if I can't tell all of my stories, maybe with a little time and a little luck, I'll at least be able to tell the best ones.
In the meantime, at least I have this blog. This is one story I can tell, and one in which I am quite personally invested. One that, if I may be so bold, a few people seem to read, and one that, in the endless reaches of the vast internet, will outlive me, or you, or anyone else alive today. Evidence that once upon a time, there was a man who called himself Knightly.
Yesterday I had an MRI, and this Thursday I have a follow-up appointment with Dr. C. I presume that is when I shall discover if going off the chemo has had any negative consequences, though I don't imagine it will. I don't feel anything that leads me to suspect any regrowth or complications. I haven't heard from Dr. C. yet as I might had the MRI shown anything particularly bad, but he doesn't work on Mondays or Tuesdays so maybe he hasn't had a chance to take a look just yet. Either way, not something I intend to lose any sleep over. One of these days, after an MRI much like yesterday's, I will hear some bad news. Maybe that day will be Thursday and maybe not. When it happens, I'll review the situation and we'll all figure out where to go from there. Until then, no sense obsessing over it.
I know that I got lucky with my first operation. It had an impact, sure, but I can still write. I can still live my life. But what about the next time? What if they have to go back into my head and remove more of my brain? Can I roll the dice twice? Is there any chance I could get through a second operation as cleanly as the first?
I have so many stories I'd like to tell. I do not feel my death hanging over me, but it seems closer on the horizon. I will not die today, but I know I will not live long enough to tell all of my stories to my satisfaction. Yet even with that thought, one that might drive me to hours, even days of steady writing in the past, I find so little time to do more than what is required of me. I tell boring stories all day at work, for people who don't much care about the ending. They contain no twists nor turns. Interesting characters are few and far between, anomalies often swallowed by predictability. Rivalries are dulled by bureaucracy and legalese, and the outcome is always the same, time and time again.
I don't think a vacation would quite do the trick. Were I wealthy enough to retire, then maybe I could focus more on telling the stories I'd like to tell. But who couldn't use a little more money, especially in this economy?
Maybe I'll continue to improve, and be able to spend more time writing for myself. Even if I can't tell all of my stories, maybe with a little time and a little luck, I'll at least be able to tell the best ones.
In the meantime, at least I have this blog. This is one story I can tell, and one in which I am quite personally invested. One that, if I may be so bold, a few people seem to read, and one that, in the endless reaches of the vast internet, will outlive me, or you, or anyone else alive today. Evidence that once upon a time, there was a man who called himself Knightly.
Thursday, January 3, 2013
And Here's to Life
So not bad, as far as parties go. Not bad at all.
I spent the night with a few friends from high school, and a few of their friends, and a few of their friends' friends. About a dozen of us, none over the age of 35, yet three of us were cancer survivors: one had testicular cancer, one had lymphoma, and lastly little old me. It seems like that shouldn't be the case. Too many of us are getting sick far too young these days. Or maybe we were always sick, and only now, with this generation, do we have the capacity to notice. Anyway, onward to happier things.
I have some great stories from that night but sadly they are not mine to tell. At least, not just yet. One was equal parts embarrassing and romantic, and ended with a woman from my past quite eager to see me again soon. She was actually my first kiss - if you'd like to call it that - just a peck on my cheek on a dare from her friends, back in the first grade. Thankfully little more than that at the time, as "elementary school sweetheart" sounds profoundly creepy. Maybe we can build something a little more significant this time around.
The party did me a world of good. I felt like my old self; sharp and quick, able to elicit laughter in one moment and contemplation in the next. Yet I'd set aside that cautious, neurotic part of me that had always held me back.
Not a bad way to start a new year.
I spent the night with a few friends from high school, and a few of their friends, and a few of their friends' friends. About a dozen of us, none over the age of 35, yet three of us were cancer survivors: one had testicular cancer, one had lymphoma, and lastly little old me. It seems like that shouldn't be the case. Too many of us are getting sick far too young these days. Or maybe we were always sick, and only now, with this generation, do we have the capacity to notice. Anyway, onward to happier things.
I have some great stories from that night but sadly they are not mine to tell. At least, not just yet. One was equal parts embarrassing and romantic, and ended with a woman from my past quite eager to see me again soon. She was actually my first kiss - if you'd like to call it that - just a peck on my cheek on a dare from her friends, back in the first grade. Thankfully little more than that at the time, as "elementary school sweetheart" sounds profoundly creepy. Maybe we can build something a little more significant this time around.
The party did me a world of good. I felt like my old self; sharp and quick, able to elicit laughter in one moment and contemplation in the next. Yet I'd set aside that cautious, neurotic part of me that had always held me back.
Not a bad way to start a new year.
Monday, December 31, 2012
Another Year
10 more hours and then that's 2012 over and done with, and what a year it's been. What a year, indeed.
The world miraculously did not end, despite the prophecies of an ancient civilization and some tortured arithmetic that seemed suspiciously influenced by chemistry, if you catch my meaning. So that was nice, though I do admit there is a certain allure to seeing how this story of us draws to a close. Call it human nature. We are storytellers by instinct, and all good stories have an ending, and a happy ending is not always the best.
I continue to recover from my chemotherapy. I still feel fatigued but I don't have the random pains I used to get, or nearly so much fuzziness. I feel creative and productive more often. Still not as much as I'd like, but I'm not done healing just yet. One weird thing; the other day I didn't sleep, by which I do not mean, "I slept 4 hours," or, "I slept 2 hours," but rather I did not sleep at all. I'm not really sure why not. I was comfortable. I wasn't particularly stressed. I tried to sleep for about 7 hours. It just didn't come together for me. I still went to work and actually felt pretty normal, if not a little unfocused. The next night I slept fine, and the next. Maybe it was just an anomaly.
In two weeks I have an appointment with Dr. C., where he will draw my blood and see how my recovery's coming along. I don't expect any surprises at that appointment, as even if there's been a change he wouldn't have any way to know from a blood test alone. I need to schedule an MRI. An MRI, and then another, and another, and another. I wonder how many my health insurance will cover each year. I know that most doctors prefer to start spacing the MRIs out over time if there's no progression, but I don't really mind the process anymore. I lie down, I get a needle in the arm, and I relax for 45 minutes. I'd rather put up with that every two months than switch to a 6-month schedule and let a recurrence go unchecked needlessly for four months.
That's another thing I can't quite get out of my head, so to speak. Every time I feel a bit under the weather, or god forbid have a headache, I wonder, is this it? Has my cancer come back? There have been times I've gone into an MRI certain that I'd soon receive bad news, only to hear the same thing I've heard after every MRI: looking good, no progression, see you in two months.
I find myself missing those weeks right around my surgery, when I was on steroids. I felt energetic and rested, for the first time in so very long. I still wonder if that's what it's like to be normal. If everyone else has that refreshed, vital feeling with little more than an 8-hour sleep. But I can't start taking them again. I know how dangerous steroids can be, and even at the time I stopped taking them as soon as my doctor gave me the go-ahead. Still, I can't help but wonder what I could have done with my life, had I never had cancer. What could I have accomplished with all of that energy? How many days have I wasted at home, due to fatigue or lack of motivation?
I'd like to make some sort of new year's resolution at this point but I have no idea what 2013 will bring. Maybe that's the point, and maybe it's why so few people actually keep their resolutions. No one ever knows what the future holds. So maybe I'll start small. Maybe I'll resolve to take more opportunities as they present themselves. More risks. Anything to start breaking down that bad habit of irrational caution that has held me back, a remnant from the person I used to be, with the sickness I used to have.
And in case those two paragraphs came suspiciously close together, this doesn't mean I'm going to start popping steroids. I was thinking more along the lines of going to parties and social events. Heading to a New Year's party tonight, actually.
So I guess that's it for 2012. Got to say it beat the hell out of 2011, but that's kind of a low bar. Here's to love, luck and life in 2013, for all of us.
See you next year, folks.
The world miraculously did not end, despite the prophecies of an ancient civilization and some tortured arithmetic that seemed suspiciously influenced by chemistry, if you catch my meaning. So that was nice, though I do admit there is a certain allure to seeing how this story of us draws to a close. Call it human nature. We are storytellers by instinct, and all good stories have an ending, and a happy ending is not always the best.
I continue to recover from my chemotherapy. I still feel fatigued but I don't have the random pains I used to get, or nearly so much fuzziness. I feel creative and productive more often. Still not as much as I'd like, but I'm not done healing just yet. One weird thing; the other day I didn't sleep, by which I do not mean, "I slept 4 hours," or, "I slept 2 hours," but rather I did not sleep at all. I'm not really sure why not. I was comfortable. I wasn't particularly stressed. I tried to sleep for about 7 hours. It just didn't come together for me. I still went to work and actually felt pretty normal, if not a little unfocused. The next night I slept fine, and the next. Maybe it was just an anomaly.
In two weeks I have an appointment with Dr. C., where he will draw my blood and see how my recovery's coming along. I don't expect any surprises at that appointment, as even if there's been a change he wouldn't have any way to know from a blood test alone. I need to schedule an MRI. An MRI, and then another, and another, and another. I wonder how many my health insurance will cover each year. I know that most doctors prefer to start spacing the MRIs out over time if there's no progression, but I don't really mind the process anymore. I lie down, I get a needle in the arm, and I relax for 45 minutes. I'd rather put up with that every two months than switch to a 6-month schedule and let a recurrence go unchecked needlessly for four months.
That's another thing I can't quite get out of my head, so to speak. Every time I feel a bit under the weather, or god forbid have a headache, I wonder, is this it? Has my cancer come back? There have been times I've gone into an MRI certain that I'd soon receive bad news, only to hear the same thing I've heard after every MRI: looking good, no progression, see you in two months.
I find myself missing those weeks right around my surgery, when I was on steroids. I felt energetic and rested, for the first time in so very long. I still wonder if that's what it's like to be normal. If everyone else has that refreshed, vital feeling with little more than an 8-hour sleep. But I can't start taking them again. I know how dangerous steroids can be, and even at the time I stopped taking them as soon as my doctor gave me the go-ahead. Still, I can't help but wonder what I could have done with my life, had I never had cancer. What could I have accomplished with all of that energy? How many days have I wasted at home, due to fatigue or lack of motivation?
I'd like to make some sort of new year's resolution at this point but I have no idea what 2013 will bring. Maybe that's the point, and maybe it's why so few people actually keep their resolutions. No one ever knows what the future holds. So maybe I'll start small. Maybe I'll resolve to take more opportunities as they present themselves. More risks. Anything to start breaking down that bad habit of irrational caution that has held me back, a remnant from the person I used to be, with the sickness I used to have.
And in case those two paragraphs came suspiciously close together, this doesn't mean I'm going to start popping steroids. I was thinking more along the lines of going to parties and social events. Heading to a New Year's party tonight, actually.
So I guess that's it for 2012. Got to say it beat the hell out of 2011, but that's kind of a low bar. Here's to love, luck and life in 2013, for all of us.
See you next year, folks.
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.
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