tag:blogger.com,1999:blog-71998522926675405572024-02-08T10:34:38.064-08:00Ramblings of a Traitorous MindA secular view of living with brain cancer.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.comBlogger78125tag:blogger.com,1999:blog-7199852292667540557.post-64111522533112863862015-06-25T11:18:00.000-07:002015-06-25T11:18:18.222-07:00Well shit.I've taken a break from this blog for, oh, about a year now, as I'm sure some of you have noticed. I think the political nature of my previous post gave a fair indicator that I was no longer using it as it was intended, as a sort of release valve for the pressures of cancer patienthood, then cancer survivorship. There have been a few other topics I've considered broaching from time to time, particularly transhumanism (cybernetics), but have never felt fully inspired to attack head on.<br />
<br /><br />
Seems I'm no longer a straight-up cancer survivor, as I've slipped back into patienthood. In fact, I've slipped pretty heavily. They know I have grade 3 cancer and suspect GBM4, so they're treating me as such. Which is... fine, I guess. It's fine. I've been recovering with my parents since early May, when I apparently lost some time. About a week, I've been told. My mom says I was pleasant if not very passive during that week but I don't remember a moment of it. At least I don't think I do. They took away my driver's license so I'm kind of stuck here now, and they aren't letting me work, which in a bigger view makes a lot of sense. Don't want to give too much independence to someone who doesn't remember what he's been up to. <br />
<br /><br />
Loyal readers, this might be it for me.<br />
<br /><br />
So, details. Seems a tumor can grow again without enhancing on the MRI, then suddenly, like flipping a switch, the whole thing lights up like a Christmas tree. That's what happened to me. I have several tumors now, all in the brain, which is also not unexpected. They don't know how long it's been growing but we all saw this coming. We threw everything we had at it the first time around, knowing we weren't saving anything for the second time. Well, this is the second time. I tried a special clinical trial limited to fewer than 100 patients nationwide and that's what gave me that blackout, or so I'm told. Now I'm on Avastin, which prevents blood supply growth. My feet look like water balloons. No one's telling me to get my affairs in order just yet but whenever I bring up the topic of the future, things get tense. Mom is driving me absolutely nuts. Whenever I say I'm going to go to bed, she bum-rushes me with a huge list of things she needs me to do, or pointless questions, or assumptions she's made about the doctor's point of view and now advocates as the given truth. If I ever push back, she acts like I'm viciously attacking her. I'm dying, mom. I'm dying. Let this be about me. Just this once.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com17tag:blogger.com,1999:blog-7199852292667540557.post-39982724203900734332013-10-04T21:08:00.001-07:002013-10-04T21:08:41.766-07:00The One with the Politics 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.<br />
<br />
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. <br />
<br />
Even so, suffering is one thing. Death is another.<br />
<br />
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.<br />
<br />
<br />
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. <br />
<br />
And that's all I have to say on matter. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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. Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com3tag:blogger.com,1999:blog-7199852292667540557.post-90985525254169461232013-06-17T21:00:00.001-07:002013-06-17T21:00:51.908-07:00The Two-Year Adrenaline RushJune 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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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? <br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
So I guess that's about where I stand. Keepin' on keepin' on. <br />
<br />
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. Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com11tag:blogger.com,1999:blog-7199852292667540557.post-77093283360946319262013-04-14T20:56:00.000-07:002013-04-14T20:58:06.492-07:00On TrucksI'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.<br />
<br />
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."<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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).<br />
<br />
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.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com8tag:blogger.com,1999:blog-7199852292667540557.post-76539081077056008572013-02-20T06:56:00.001-08:002013-02-20T06:56:59.166-08:00Coping with Survival<!--[if gte mso 9]><xml>
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I have become comfortable with the idea of a truncated life.<br />
<br />
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.<span style="mso-spacerun: yes;"> </span>Some of this post is going to sound like
fishing so please don't think I'm looking for comfort or reassurances.<span style="mso-spacerun: yes;"> </span>I'm just sorting through some strange
thoughts (as usual).<br />
<br />
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. <br />
<br />
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.<br />
<br />
And then he said something that I kind of wish I didn't hear. He said
that I might be done with cancer. Forever.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <span style="mso-spacerun: yes;"> </span>We didn't catch my cancer early.<span style="mso-spacerun: yes;"> </span>It wasn't in a "good" place.<span style="mso-spacerun: yes;"> </span>It wasn't small or well-defined.<span style="mso-spacerun: yes;"> </span>It even looked like it was becoming more
aggressive.<span style="mso-spacerun: yes;"> </span>So here comes that question
of "why me," once again.<span style="mso-spacerun: yes;"> </span>Not,
"why did I get this," but, "why might I have beaten it when
others didn't?"<span style="mso-spacerun: yes;"> </span>I guess it all
comes back to the wise words of <a href="http://traitorousmind.blogspot.com/2012/07/woody-roseland-gets-it.html">Woody Roseland</a>.
<span style="mso-spacerun: yes;"> </span>There is no why, when it comes to
cancer.<span style="mso-spacerun: yes;"> </span>I'm not doing well because I
fought harder, or because of some strength of character that I have and others
lack.<span style="mso-spacerun: yes;"> </span>I'm doing well because cancer is random.<span style="mso-spacerun: yes;"> </span>It's like a tornado.<span style="mso-spacerun: yes;"> </span>A tornado spares some people.<span style="mso-spacerun: yes;"> </span>Others, it kills.<span style="mso-spacerun: yes;"> </span>There are things you can do to improve your
odds but it's ultimately up to chance.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;">
</span><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But people keep contacting me, including a friend I've known
for years who was recently diagnosed.<span style="mso-spacerun: yes;"> </span>If
they find my counsel valuable, I certainly won't turn them away. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On that note, I want to remind you, dear reader, that I keep
my e-mail on this page for a reason.<span style="mso-spacerun: yes;">
</span>Please don't hesitate to contact me if you'd like, even if you just want
to vent or chat.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Speaking of which, I have two links for you all today.<span style="mso-spacerun: yes;"> </span>The first comes from <a href="http://www.mesothelioma.com/blog/authors/cameron/im-so-mad-cancer-and-anger.htm">Cameron Von St. James</a>,
the husband of mesothelioma survivor Heather Von St. James.<span style="mso-spacerun: yes;"> </span>I've linked to his post on anger, which I
found particularly insightful.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> I found it interesting and hope that you'll all take a look.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The second comes from a fellow brain cancer patient, Ozman, who
was recently diagnosed.<span style="mso-spacerun: yes;"> </span>I suggested he
start a blog and he took that recommendation to heart.<span style="mso-spacerun: yes;"> </span>I suppose <a href="http://ozman5956.blogspot.com/">I should let him take it from there</a>.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
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<![endif]-->Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com6tag:blogger.com,1999:blog-7199852292667540557.post-67138560396109930952013-01-29T12:52:00.000-08:002013-01-29T12:52:12.044-08:00Two months outIt'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.<br />
<br />
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.<br />
<br />
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? <br />
<br />
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.<br />
<br />
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? <br />
<br />
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.<br />
<br />
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.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com2tag:blogger.com,1999:blog-7199852292667540557.post-76217592070588632002013-01-03T06:06:00.004-08:002013-01-03T06:06:43.893-08:00And Here's to LifeSo not bad, as far as parties go. Not bad at all. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
Not a bad way to start a new year.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com3tag:blogger.com,1999:blog-7199852292667540557.post-62294440906835217662012-12-31T10:58:00.004-08:002012-12-31T11:03:57.301-08:00Another Year10 more hours and then that's 2012 over and done with, and what a year it's been. What a year, indeed.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
See you next year, folks.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com2tag:blogger.com,1999:blog-7199852292667540557.post-18696577852042383062012-11-30T13:01:00.003-08:002012-11-30T13:01:38.152-08:00The Importance of ToneBefore I begin, I'd like to direct your attention to today's <a href="http://xkcd.com/1141/">XKCD </a>cartoon. I think the reason why will be apparent. <br />
<br />
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. <br />
<br />
My co-worker looked to me with concern and asked, "oh? What's wrong? Are you OK?" <br />
<br />
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."<br />
<br />
"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. <br />
<br />
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.<br />
<br />
Or maybe she thought I was making a really tasteless joke but didn't want to call me on it. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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?Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com1tag:blogger.com,1999:blog-7199852292667540557.post-31431685613165890932012-10-30T07:17:00.001-07:002012-10-30T07:18:33.778-07:00Time for a New ChapterI 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.<br />
<br />
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."<br />
<br />
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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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. Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com5tag:blogger.com,1999:blog-7199852292667540557.post-28242420470714091952012-09-30T19:14:00.000-07:002012-09-30T19:14:27.995-07:00Still hereIt's been a while, longer than I like to go without a post, and for that I apologize and have decided to throw something up here, for better or worse. The short version is that I just haven't really had the energy lately. I don't think it's any real sort of change and have no reason to suspect otherwise. Maybe it's because it's a busy time of year at work and I need to put my energy into that. Maybe I'm just tired of the grind. Either way, my blog is not the only thing I've been neglecting. My work, my own personal pursuits... they've all fallen to the wayside in the face of the all-encompassing blah. I hold on to hope that once I stop taking chemo, I'll have less trouble keeping up. Sure, I started falling behind even before my surgery, but I had a growing brain tumor at the time.<br />
<br />
It appears that right now, I do not. I had an appointment with Dr. C. to start round 11 and it took him a few minutes to get over my blood results. In his own words, they're essentially perfect. Not for a cancer patient, but for anyone. He had me stand up and walk around the exam room a bit, checking for coordination, and he told me that I'm doing remarkably well. More than that, he said he sees no reason to suspect that'll change. I still hold on to my suspicions - the minor headache that I feel right now makes sure of that - but it's still good to hear. About as good as it gets without going into "miracle" territory. Even so, I didn't bring up the idea of stopping chemo. I feel like if I do, he might respond to it negatively, or say that he doesn't recall discussing that with me so long ago. I am just one of many patients, after all. He isn't my main oncologist anyway, so I'm not sure it's his call to make. On the other hand, it's not either of my oncologists' calls. It's my call. It's always been my call. What I'm really after is their blessing more than their permission. We'll discuss it next time. In the meantime, I've been shopping around for anniversary presents for Dr. C. Maybe one for the lab tech, too. And a box of donuts for everyone, so no one feels left out.<br />
<br />
It's finally autumn, my favorite season, and I've been paying close attention to all the changes it brings. Around here, it creates a lot of mist and fog, for quite a dramatic effect as I look out across the valley I can see from my home. When the weather's just right, the fog settles in the bottom and I can still see the peaks of the hills beyond. But it's the small changes that mean the most to me. On my way to work I can see the ghosts of dewy spider webs spun between power lines, sometimes dozens between a single set of poles. The spiders have no concept that those wires are more than oddly smooth branches. They cannot possibly fathom that they have built their homes between two cords carrying enough current to burn them to a crisp a million times over. It's like building a tree-house on the warhead of a nuclear missile. There might be a more meaningful, significant metaphor to be made here, but I really don't feel like making it. I don't want to attach any further significance to something I enjoy purely for its delicate beauty. <br />
<br />
I guess it's back to work tomorrow. I'm going to try to get caught up. I always do. Somehow it just doesn't work out. "Just make it through the day" is much better advice when you don't have a schedule to keep. Maybe I'll feel better in the morning, and I'll manage to make some solid progress. That happens from time to time, usually unrelated to anything I do beforehand. I suppose drinking my bodyweight in coffee probably couldn't hurt.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com4tag:blogger.com,1999:blog-7199852292667540557.post-13713827773309819452012-08-31T19:56:00.002-07:002012-08-31T19:57:20.075-07:00The Relief of Mundane ProblemsI had an awful day on Wednesday.<br />
<br />
Stressful, long, exhausting, nigh-disastrous, its fires still burning (figuratively... I think), and infectious, it was my worst day in recent memory. Let's start at the beginning.<br />
<br />
It rained heavily on the way to work. The defogger in my car hasn't worked since I last had it repaired, something I've meant to address but between work and my various treatments I've lacked the time and energy to do so. At least, that's what I tell myself. During my commute the ventilation blowers kicked on full blast and refused to shut off, even when I took the key out of the ignition. Maybe the car was trying to dehumidify the interior - impossible to do, given the aforementioned problem with the air conditioner - and drained itself in the vain attempt, but by the end of the day the battery was completely dead. Jack was kind enough to jump it for me and tried to help me find the problem, or at least get it to stop wasting power, but nothing short of unplugging the battery did the trick. As soon as we reconnected the battery, the blowers started right back up. Yeah, this is pretty boring. It was better at the time, because then it was less boring and more of a tremendous hassle. <br />
<br />
So I took my car to the local Sears, which was the only service shop I knew of that was open at the time, only to find that they don't actually do repairs. About 30 miles wasted, since traffic forced me to take the long way back toward my home, and my usual repair shop. Their mechanics had all gone home so I'd have to leave the car overnight and pick it up the next day. The owner drove me home, and it was about 2 minutes from my front door when I realized I'd left my house key on my car keychain, and my spare was locked inside my house, which in retrospect is a really stupid place to ever keep a spare key. To be fair, this had been the first time I've locked myself out of my room since my freshman year of college.<br />
<br />
My parents had my spare spare, but were a good 40 minutes away. As the sun set, I sat on my tiny deck and watched a spider weave its web in a tree across the way. The heat of the day relented under a cool breeze. None of my neighbors spotted me, which spared me the humiliation of explaining why I was suddenly such a fan of fresh air and mosquitoes. When I asked my father to bring my key, I'd apologized so many times I lost count. Yet as I sat there, swatting at the insects of the growing dusk, I felt as though I'd won a strange sort of victory.<br />
<br />
I'd had a truly rotten day, but not one of my problems had a thing to do with my cancer. Each problem was mundane and common. That I could still drive enough to have car troubles, was a victory. That I could still pay my mortgage such that I had a place to call home, was a victory.<br />
<br />
When Dad showed up I apologized again. We hugged, I unlocked my door, and the both of us went home. It was 8PM.<br />
<br />
I have my car back now, and it's mostly fixed with the few remaining parts on order. It's good enough to drive for now, and the blowers are working properly again, $230 later. Good enough to take me to the MRI I had today, then to my parents' place for dinner, and back home again. Next week I'll bring it back in to finish off those remaining repairs.<br />
<br />
In the meantime, I should probably figure out a better place to stash my spare key. Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com5tag:blogger.com,1999:blog-7199852292667540557.post-42511539640136322582012-08-16T02:11:00.002-07:002012-08-16T02:16:05.388-07:00Nocturnal AdmissionsThe time is currently 4:46AM.<br />
<br />
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. <br />
<br />
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.<br />
<br />
Ondansetron does not taste of mint.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com6tag:blogger.com,1999:blog-7199852292667540557.post-90919537031186105232012-07-31T09:15:00.002-07:002012-07-31T09:15:37.886-07:00Comfort for a friendLet me tell you about a friend of mine. Let's call him Bob.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com4tag:blogger.com,1999:blog-7199852292667540557.post-46583601953343053442012-07-24T11:00:00.000-07:002012-07-24T11:00:37.924-07:00Woody Roseland gets it<blockquote class="tr_bq">
"When staring cancer in the face, you learn who you are." - <a href="http://www.youtube.com/watch?v=Hiry--CYiwI">Woody Roseland</a></blockquote>
I 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.<br />
<br />
Woody also produced <a href="http://www.youtube.com/watch?v=TUP3XqjN69M">this </a>video, aptly titled, "S#!% Cancer Patients Say." Good stuff.<br />
<br />
<br />
<br />
<br />
<br />Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com2tag:blogger.com,1999:blog-7199852292667540557.post-17185861578776049962012-06-29T18:45:00.000-07:002012-06-29T18:46:17.661-07:00One YearThe 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.<br />
<br />
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 <i>Battle: Los Angeles</i> 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?<br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
There are worse bargains to be made, my friends. <br />
<br />
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.<br />
<br />
Thank you, dear readers, for indulging my ego over these many months. Thank you for taking this journey with me.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com6tag:blogger.com,1999:blog-7199852292667540557.post-88671922044381914252012-06-07T10:53:00.002-07:002012-06-07T11:01:04.122-07:00Now 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com2tag:blogger.com,1999:blog-7199852292667540557.post-38884478222082729462012-05-31T12:17:00.001-07:002012-06-07T11:01:46.907-07:00Not quite there yet, but closerSo it seems this whole low platelet deal isn't a one-time thing. I guess back when I started chemo I had a healthy reserve of platelets and I've been whittling away at them over the weeks and months and finally used up all my spares, leaving me with the bare minimum (or less). Short version is that I've had to delay my chemo again. This time I had about 83,000 platelets per microliter, better than last time but still only about half the lower normal limit and too low to start my chemo. They're going to check my blood again next week before giving me the go-ahead. At least they'd better, because all these office visit co-pays are starting to add up. If I'd known it was going to be this expensive I never would have agreed to have cancer in the first place. Anyway, we're likely going to change my treatment schedule to 5 days on, 4 weeks off, instead of just 3 weeks off. The chemo has worn me down. I need more time to recover. It boggles my mind that just two months ago they were thinking of upping my dose by about 30%. <br />
<br />
Work's been hard. Deadlines are deadlines and I hate making excuses for myself, even if they're really good ones, but I've had a lot of trouble focusing lately. I know that I need to keep working, for the money, the insurance and for the sake of my own emotions. I just never really expected it to be like this. You ask someone, what would they do if they knew they didn't have long to live. No one ever says, "well gee, I suppose I'd keep working a full-time office job." I'm one seizure away from that no longer being an option. Of course that seizure would end a lot of other things as well, including the sense of freedom and independence I get from being a mostly-functional adult with my own car, my own keys, and my own home. I'm one seizure away from being a kid again, but I don't want to go back there. I just wish I wasn't stuck in this limbo, this constant state of "quasi-dying," where sickness and despair makes it harder for me to work but work makes it possible for me to have anything <i>other </i>than sickness and despair. If this had just hit me a few decades later, maybe I'd have enough in savings for an early retirement. As if that's the only reason to wish cancer had waited a while longer. The other day a co-worker of mine told me I was lucky to be fighting this while I'm still young and strong. I couldn't help but sarcastically reply, "yeah, it would have sucked if I didn't get cancer until my fifties or sixties." He admitted that yeah, that was a dumb thing for him to say, but I reassured him that I knew what he meant and appreciated the sentiment.<br />
<br />
Over the weekend I visited my parents to celebrate my recent birthday (I should probably update those "29s," but for some reason they all look so much nicer than "30s"). It was stressful, to say the least. They invited over a few other relatives, including some that are a bit too high-energy for me. Strange, active people. I put on a brave face and soldiered through it, for my mom's sake rather than my own. I felt cornered, in part due to my position at their too-small table in their too-small kitchen, and also because I was the center of attention at a party better suited to someone a third my age. By the end I'd had enough. Over the last year I've developed a far greater capability to withstand discomfort, but I've also lost a lot of patience for utter nonsense. I think there was supposed to be some sort of puppet show but I politely excused myself and slipped out to have a moment to rest. I felt beyond exhausted and had trouble keeping my thoughts straight. I had trouble forming opinions, and articulating them. I didn't feel I was safe to drive, so I spent the night on an uncomfortable air mattress on the TV room floor. My brother and his wife were using the bedroom I'd used during the month after my surgery, when I'd stayed with my parents.<br />
<br />
I don't get to see either of them often enough. My brother isn't an outwardly emotional person. He doesn't like physical contact, or expressing things as scary and dangerous as feelings. He shows his affection in other ways, and over this last year he's been there for me in every way he could, given that he lives half-way across the country. We'd kept in touch through e-mail but this was the first time we'd met face-to-face since before my surgery. I know that it must have been emotional for him. I wonder what he thought I'd become, and how close I was to his expectations. Did he feel relief that I am so close to what I used to be, or sorrow at the significance of my shaved scalp, and that scar over my brow?<br />
<br />
He, his wife and I spent some time together. That's all I'd really wanted. Not some party with loud relatives, or "events," or "activities." I just wanted to be with my brother and sister-in-law for a while. <br />
<br />
Maybe it's time for me to do something other than struggle for adequacy. I can't retire, but I can take vacations. That sounds like the sort of thing a 30-year-old does from time to time, right?Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com10tag:blogger.com,1999:blog-7199852292667540557.post-75884060763873089162012-05-24T07:03:00.004-07:002012-06-07T11:02:42.790-07:00Chemo 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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
I've always hated math.<br />
<br />
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.<br />
<br />
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.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com2tag:blogger.com,1999:blog-7199852292667540557.post-87876841248382288032012-04-13T12:14:00.000-07:002012-04-13T12:14:26.888-07:00Testimony from a Brother in ArmsI saw <a href="http://boingboing.net/2012/04/12/hell.html">this </a>over on <a href="http://www.boingboing.net/">BoingBoing</a>, 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.<br />
<br />
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. <br />
<br />
Anyway, it's good to hear that Mr. Dery appears to have dodged that bullet with his member intact. Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com1tag:blogger.com,1999:blog-7199852292667540557.post-71553663454496919862012-04-09T14:25:00.000-07:002012-04-09T14:25:24.875-07:00My World, My MirrorI have always felt a sort of connection to the natural world. Over the past year, our state has been lashed by storms of unprecedented strength, shattering our characteristic forests and coaxing our citizens to further trim back what growth survived the wind and rain. Derelict buildings, once masked by foliage, have started to emerge from the thinning woodlands along our streets. I cannot help but think of my hair when I see familiar patches of forest, cut back so drastically I no longer recognize them, save for the many stumps. <br />
<br />
But I also have always felt a strange attraction to derelict structures. They resonate with such stark, unashamed truth: this is what we were, and what we shall be. Decaying, skeletal, a monument to our accomplishments and comfort but victim to the natural forces that were here before us and will remain after us. I have always wanted to go exploring in one but know that that's both illegal and dangerous. The former doesn't bother me much any longer, boyscout though I've been. The latter makes me want to bring someone, so as not to go alone. I do not know if I know anyone I could recruit for such an undertaking, but that is the only way to really know a derelict. I pass an old house every day, on my way to and from work. Its windows are open, some broken, some missing entirely as if gutted from the structure. Dead vines lace across its bone-white facade, like black arteries through adipocere. I want to go in. I want to see how it was left, and wonder to myself, what story played out here? Who was the last person to touch this discarded object, or that? Did they know they would never return? Did they regret not bringing it with them? What were the last words spoken here? <br />
<br />
Above all, I am most connected with water, and perhaps that is why I cannot tolerate the intersection of derelict and water. When I was very young, I couldn't stand the sight of something artificial obscured by the murk of a lake. I remember seeing the ladder to a dock within the pea green water, light streaming around it, shadows reaching down into the darkness below. I always imagined there was something down there, something metal and jagged and wrong, waiting to reach up and grab me. I had to steel my nerves to swim over that dark water. Even after I dove off that dock, and swam all the way down to feel the slime and mud at the bottom, 20 feet below, I still avoided the chains that moored the dock in place. Then one year, I was nearly a teenager at the time, I went to the lake for a swim. The other swimmers looked like there was something wrong with their skin. Tiny, thin black lines, like hairs, all over. They were all lined up in front of a hose, which was used to cleanse their bodies of this strange phenomenon, of the sludge that clung to their body hair.<br />
<br />
Toxic sludge. The lake had been poisoned by runoff. <br />
<br />
Another place miles away, the only natural spring I've ever seen. I remember the natural stone pool into which it flowed, crystal clear. The water was so pure, and so delicious. It isn't, any longer. It, too, has been poisoned. <br />
<br />
Fitting, then, that I too have become poisoned. I wonder if I will ever be pure again. <br />
<br />
I know what it's like to drown. I don't mean that metaphorically. I mean that I have struggled for breath with all my strength, and found my strength lacking. I have felt my lungs fill with water, and my body go limp. I remember the incredibly clarity of realizing that I am about to die, and the peace of acceptance. Then the weight on me lifted, I pushed to the surface with my last ounce of strength, and I coughed up two lungs' worth of pool water. <br />
<br />
Can't say I'm disappointed with how that turned out, but that calmness still haunts me. If there's a moral to this story, I need some more time before I can see it. Unless it's just that "Let's Drown Knightly" isn't a great pool game.<br />
<br />
MRI tomorrow. Wish me luck, boys and girls.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com4tag:blogger.com,1999:blog-7199852292667540557.post-7215017172086716592012-03-29T09:44:00.000-07:002012-03-29T09:44:37.263-07:00Losing my Winter Coat"Have you been shaving your hands?"<br />
<br />
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 (...<i>ladies</i>). 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."<br />
<br />
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.<br />
<br />
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).<br />
<br />
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.<br />
<br />
But hey, at least I'm not a yeti anymore.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com2tag:blogger.com,1999:blog-7199852292667540557.post-7247707097514433842012-03-22T06:02:00.000-07:002012-03-22T06:02:09.095-07:00What'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.<br />
<br />
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.<br />
<br />
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?<br />
<br />
I thank him politely, promise I'll look into it (which I have), and hope he never, ever mentions it again. <br />
<br />
Anyone else have any similar experiences?Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com6tag:blogger.com,1999:blog-7199852292667540557.post-9975281241555281702012-02-29T07:56:00.002-08:002012-02-29T07:58:48.205-08:00No News is Good NewsAnd good news is good news too.<br />
<br />
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.<br />
<br />
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.<br />
<br />
In other news, the good people over at <a href="http://www.cancerforums.net/">Cancer Forums</a> 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.<br />
<br />
Happy Leap Day, everyone.Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com6tag:blogger.com,1999:blog-7199852292667540557.post-66728890916259851962012-02-13T12:59:00.000-08:002012-02-13T12:59:23.883-08:00MRI Results and Other StuffHad 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"). <br />
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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? <br />
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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 <i>love </i>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. <br />
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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. <br />
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Then there's <i>God Bless America</i>, 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.<br />
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I still haven't seen <i>50/50</i>, 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. Knightly Q. Blowgunshttp://www.blogger.com/profile/01880884017306360656noreply@blogger.com1