[cancer] More detailed thoughts on mortality
Recently I observed:
It occurred to me recently that one way to think about my cancer risks is that we’re all dying, I’m just probably dying a little faster than most of my peers.
Somewhat in parallel to that and a few days later, ![[info]](http://l-stat.livejournal.com/img/userinfo.gif?v=1)
klwilliams remarked in comments to another post of mine:
I realized what mortality *meant*: you don’t get to find out how all the stories end.
She really struck a chord for me with that observation.
the_child and I have occasionally discussed the hypothetical of whether one would choose to live forever, if one could. (These conversations began even before my initial cancer presentation, and have recurred from time to time since.) She and I both think we would choose that, even at the obvious emotional costs, simply because we both want to see what happens next, next and next after that. We want to know how the stories come out, in short. Where the new ones come from, how the current ones evolve, how they all end. Or not, for stories don’t really end. They just turn into new stories.
For my own part, I made it through the first round of cancer in 2008 so quickly and with so much surprise that I’m not sure I ever took it truly to heart. My oncologist at the time told me my cancer was unusual and very unlikely to recur — I was given 99% odds of not experiencing any metastasis. I went on with my life, happy and confident that we’d beaten it.
When my lung metastasis was detected in 2009, we spent months dealing with and arguing the diagnosis. The oncology team literally didn’t believe their own clinical evidence both at first, and for quite some time after as we pursued additional tests. The recurrence was very much a surprise to every one. Still, I went through the lung surgery and the subsequent non-adjuvant chemotherapy in the first half of 2010 convinced we were going to beat it, and I’d be fine.
The upset and emotional disaster of the departure of calendula_witch from my life at the end of 2010, followed a few months later by the diagnosis of the liver metastasis I’ve just concluded chemotherapy for, finally broke my already battered optimism. At a fundamental level, I’ve gone from believing that I would beat this to believing that this disease is going to claim me in the not very distant future.
I’m not talking about depression, or a difficult emotional reaction. More like a baseline conviction that I’ve already lost the game and we’re just playing for time. To be clear, this is neither my clinical diagnosis nor prognosis. At the moment, I am considered to have “no evidence of disease following resection.” That’s the clinical diagnosis. My prognosis is a 70% chance of recurrent metastasis.
It’s probably coming back.
And deep in my heart, I believe it will get me.
This is why I flash on stuff like being irritated because I don’t know if I’ll live long enough to see both halves of The Hobbit movie. Whenever this comes back, if the metastasis is in the ‘right’ place, we can treat with resection and chemotherapy, but I’ll lose another productive year out of my life as I’ve lost much of the last two years. If the metastasis is in the ‘wrong’ place, i.e., not surgically resectable, I’ll receive life extension therapy but my time will likely be counted in months from that point. Even if it is in the ‘right’ place, there’s only one more chemotherapy option available to me. After that, all the metastases are in the ‘wrong’ place, resectable or not. In effect, every scan I go through is a death lottery for me. (The next one of those is February 14th.)
So the mortality is always there. I’m not dying right this moment any more or less than you are, but like I said, on the whole I’m probably dying rather faster than most of my peers. And klwilliams put her finger on it. I won’t see how the stories come out. The stories of my parents’ lives. The story of my daughter’s growth to adulthood. The stories of my own characters, their fictive worlds and desires. The stories of my friends, my loved ones, everything. Even movies I care about.
In a sense, I’m already mourning what isn’t even yet guaranteed to come. My convictions are emotional, not based on logic or clinical evidence. But they are strong, bone deep. I’ve been battered too long, too many times, endured too many losses to cancer already, to believe that I’m getting out of this one clean at this point.
I can remember when life seemed like it would go on and on. I miss those days.
Tags: Calendula, Cancer, Child, family, health, Personal, Writing
Posted: 8:17 am Wed December 28 2011 | Comments(6) |
[cancer] Talking to my oncologist about mental and emotional health
Saw the oncologist yesterday immediately after my bloodwork. This isn’t the usual order of things, as they prefer to see me the same day as the chemo infusion, but that’s how the scheduling fell out. As, happily enough, I managed to get through this past chemo cycle with no major side effects crises, we wound up talking about my mental and emotional health instead of doing another round of crisis management.
I told her I’d been experiencing a lot of depression and despair these past two weeks. Episodically, not continually, but frequently and strongly. We talked about the blatantly obvious reasons for this, and the less obvious ones.
Obvious to anyone: I have cancer. Duh. And I’ve hit the point in the chemo cycle where I am hard of thinking, and everything has a huge, dire edge. I’m very worried about having another metastasis and jumping right back into treatment in the spring, doing all this shit again and losing another year of my life to the disease.
Less obvious unless you’re familiar with my personal situation: I continue to very much miss my vanished primary relationship, and am at a point where the emotional support of such a relationship would be hugely important if I had it. Also, this is about the time last year when my relationship with calendula_witch really began to disintegrate, so there’s lots of bad echoes these days. And then there’s the whole no more writing thing that’s come on during this chemo cycle, with its attendant consequences for Sunspin, and more generally, my writerly identity.
We discussed whether to go on antidepressants. kenscholes is convinced I need them. I am very resistant to adding yet another psychotropic drug to the hellbrew that goes into my body every two week cycle. She recommended Celexa as being compatible with my other medications, but strongly felt my depression was situational (with which I agree) and that I should wait until I’m off chemo and see how things are going. In terms of depression, I’m still quite functional within the limits of chemo; I don’t spend my days in bed, I meet all the obligations my reduced energy levels allow, and so forth. So it’s an open question.
The most disturbing part of the conversation was when we got back to the potential for further metastasis. She was pretty blunt, and said that my fear was justified and it was quite possible that was what would happen. 50/50, frankly. There aren’t kind words for this, that’s my life with cancer, but it still was kind of a whammy. And yes, I’d rather hear the straight dope than something kindly, but that doesn’t make it any easier.
All in all, a worthwhile but not satisfying conversation. This is the world I live in.
Tags: Calendula, Cancer, health, Personal
Posted: 5:29 am Fri October 28 2011 | Comments(5) |
[cancer] Living in the past
Over the last few days I’ve been going through every single blog post since April of 2008 in order to build an index of my cancer blogging. As of last night, that would be 768 posts out of about 4,000. The raw index (ie, not yet curated by me) can be seen here.
It’s been quite a journey. Reliving the original presentation and the multiple metastases, including the erroneously diagnosed steatosis. The fear, the grief, the pain. Watching the rise and fall of my relationship with calendula_witch, whom I loved more than I’ve ever loved anyone, for all the good it did me in the end.
Not a wayback machine I really needed to climb into.
But this is important. It’s important to have a summary index of key posts so that people new to the blog can get a handle on the cancer blogging if that’s what they’re here for. It’s important to have a listing of the posts so I can begin teasing out a coherent book about it, whether that’s part of the Antarctica project or its own, freestanding effort. It’s important to put some structure on the experience. Because my philosophy from the beginning has been that this is so damned terrible, so damned hard, that I may as well harvest something of value from the experience.
But this review of the past three and half years has been tough. It’s eaten a lot of my time and brainspace, and left me a little more emotionally and mentally numb than I am already wont to be.
The past isn’t such great territory for me these days. Neither is the future. Good thing I can live in the now at least part of the time. Because right now, only the now seems the least bit tenable.
Tags: Calendula, Cancer, health, Personal
Posted: 5:32 am Wed September 28 2011 | Comments(0) |
[cancer] Wishing for a different future
Several folks have pointed me towards the most current xkcd, which talks about cancer and survival rates in that inimitable xkcd fashion.
I know exactly what he’s on about.
In April of 2008 I was diagnosed with primary colon cancer. In May of 2008 my colon was resected, and I was told we’d gotten it. They were so confident that I wasn’t even prescribed chemotherapy to follow up.
In April of 2009, my lung metastasis was first detected. After months of testing, argument and second opinions, my left lung was resected in November of 2009. I was told we’d gotten it, and prescribed a course of chemotherapy that ran from January to June of 2010.
In the post-chemo scans of July 2010 a liver metastasis was detected. My liver was resected in September of 2010, and we discovered that the metastasis was diagnosed in error. I was told we’d gotten it.
In the routine scans of April, 2011, another liver metastasis was detected. I was prescribed a second course of chemotherapy, which was interrupted after four infusions so that my liver could be resected again in July of 2011. In my post-operative consultation with the surgeon this past week, I was told we’d gotten it.
I pointed out to him that I had repeatedly heard that before, yet like a B-movie zombie, the cancer keeps returning. His face fell, and he commented that of course we hadn’t surgically addressed the systemic disease, but we’d met our surgical goals.
It. Just. Keeps. Coming. Back.
I’m a fairly optimistic person by nature, but these past few days I’ve been struggling emotionally. I recognize this for what it is — post-operative depression compounded by the enforced idleness of my surgical recovery — but the roots are real. I only have a 30% chance of surviving the next five years. That’s a real statistic that really applies to me, and to this damned disease that will not quit.
This most distresses me in two ways.
One, the_child is five years from graduating high school. I very much want to be a presence in her life, with enough health to be engaged, at least until she launches into young adulthood. Chemo strips my ability to engage, so while it’s 30% likely I’ll live to see her graduate high school, it’s also quite likely I’ll spend much of that time debilitated and disabled. Not much of a dad for her.
Two, if I just keep getting sick over and over, I despair of ever building a strong life partnership. Since calendula_witch left me, I’ve lost an enormous amount of my emotional self-confidence, and no longer trust my relationship judgment. What I thought I had with her was so misaligned with the reality, especially under the distortions of chemotherapy. Combine this with the fact that since April of 2009, I’ve had about six weeks of time when I wasn’t under either severe mental/emotional stress or severe medical stress from the cancer (specifically the weeks before last April’s scan that pushed me back down this road again). I’ve simply not been myself, not been emotionally or physically able to date, make social, emotional and sexual connections.
I don’t mean that I feel lonely and socially isolated. Far from it. But I have neither the confidence nor the energy to work toward finding another core relationship. And if the cancer keeps coming back as it has so relentlessly year after year, I may never have those things again.
Is it any wonder I’m depressed?
I know once I get back to writing and Day Jobbery, probably early next week, this mood will lift. When I am engaged in my busy-ness, I don’t have time to be maudlin. But right now I’m looking at the years of my life and realizing there’s a very good chance I’ll never really get back what I am, who I am, and what I want most.
That’s just hard to accept with peace, grace and dignity.
Tags: Calendula, Cancer, Child, health, Personal
Posted: 10:31 am Fri July 29 2011 | Comments(18) |
[links] Link salad girds for more medical intervention
A reader reacts to “The Passion of Mother Vajpai” — Short fiction from me and calendula_witch
A Library of Listening, Made by You
Record Tornado Season Caused by Climate Change? — Unfortunately, no one knows. Weather is not climate. No single weather event is indicative of climate, no matter how much our friends at FOX point to snowstorms as evidence that climate change is a liberal plot. Weather trends, however, can be evidence for climate trends.
Doing Math Is For Ugly Girls
Japan: elderly engineers want ‘final mission’ to Fukushima — A group of elderly Japanese engineers are prepared to come out of retirement to fix the Fukushima nuclear power plant for their final mission.
Pope ousts ‘loose living’ monks of Rome’s Santa Croce monastery — Vatican acts after reports of monks staging concerts featuring a former lap dancer and running hotel service. Obviously the fault of hippies. (Snurched from crowleycrow.)
Oregon set to remove faith healing defense for parents — A bill “that would remove the defense of religious belief in the case of homicide”. I will be very proud of my state if we get this completed — faith healing to exclusion of medical intervention is child abuse, pure and simple — and frankly astonished that our powerful conservatives allowed it.
Bradlee Dean Lashes Out Over Prayer Controversy — Amazingly, even conservatives can occasionally be embarrassed by the rabid Christianism they have spent the last few decades so vigorously enabling.
The GOP 2012 Field’s Weak Leaders
Alabama Lawmaker Abandons GOP Over New Law Aimed At Teachers
?otD: Would you like to be Raptured?
5/27/2011
Writing time yesterday: 1.0 hours (1,200 more words on a non-fiction project)
Body movement: 30 minute suburban walk
Hours slept: 7.25 hours (solid)
Weight: 234.2
Currently (re)reading:
A Clash of Kings by George R.R. Martin
Tags: audio, Calendula, climate, Culture, gender, Japan, Links, Oregon, Personal, Politics, Religion, reviews, stories
Posted: 5:29 am Fri May 27 2011 | Comments(0) |
[personal] Miscellaneous updatery from high above the Strip
Yesterday was a mighty full day at the Day Jobbe trade show here in Las Vegas. Afterwards, I went to dinner with friends here at Picasso’s in the Bellagio. The conversation was wide ranging and excellent, and the food was, well, nigh indescribable.
ZOMG, that was the finest meal I’ve eaten in years. It began with an amuse-boche which was a tapas-style chicken fritter, followed by a roasted quail and field greens salad, followed by foie gras steak and braised pineapple followed by fallow dear medallions with pickled cabbage and new potatoes, followed by an absolutely bizarre and wondrous dessert of chocolate truffle beignets plus chocolate-dipped peanut butter ice cream, plus part of one my fellow diners’ cheese plate.
I blew my diet from here to Mars, but wow. Back to virtue today.
Odd, unhappy dreams last night, first of calendula_witch, then of me and Mother of the Child involved in some madcap blues music adventure with Charles Barkley wearing a Don King wig.
In retrospect, I’m not sure I should have eaten that meal after all.
Also, I did manage to squeeze in an hour of effort on Kalimpura revisions, just barely.
Walked the Strip this morning again in the other direction, toward Mandalay Bay. Not quite as obnoxious as yesterday’s walk, and I continue to admire the architecture. Though in truth the Luxor mostly makes me think of the Tyrell Corporation.
Even more full today — including the closing reception I think I’m working about 12 hours straight through. A facilities tour tomorrow, then flying home just in time to hop it for Kauai on Thursday morning with the_child.
Be well, write more, stay busy, wherever you are and whatever you are doing.
Tags: Books, Calendula, Child, Kalimpura, Kauai, Las Vegas, Personal, Travel, work, Writing
Posted: 6:25 am Tue May 03 2011 | Comments(0) |
[cancer] Settling into a different mind
Norwescon weekend was both rewarding and difficult for me. While I was there, I received an outpouring of love and support from both dear friends and total strangers. But I also found myself uncharacteristically withdrawn, overwhelmed, fatigued. I can already see my healthy mindset melting away and my patient mindset asserting itself in the fog of medical stress.
The habits of illness are so close to the surface for me these days.
Not much is going to happen here until Wednesday’s appointment with the liver surgeon, and the first real checkpoint is the port reimplantation on May 10th or 11th. My cancer isn’t advanced enough for me to be experiencing direct symptoms. All of this is stuff inside my head and heart.
Also, re-entering the cancer space is reigniting my difficult emotions around the departure of calendula_witch from my life. She made a different choice than I would have preferred, as is very much her privilege. I’ve been doing a good job of moving on, but I can already tell that my repeated journey through chemotherapy and surgery will be triggering powerful memories, regrets and far more negative feelings. I’m taking this next journey through hell without a love of the heart close to hand, without a life partner.
Cancer is a lonely house in which to dwell even when one is bonded. I am not looking forward to finding out how much more lonely it will be without her.
At least she’s free of it this time.
So much churn in my head and heart, and I am only at the beginning of another miserably difficult year-long pasage. I so very badly do not want to do this again.
Tags: Calendula, Cancer, Conventions, health, Personal
Posted: 5:22 am Mon April 25 2011 | Comments(7) |
[child] She just keeps growing up
the_child sings Papagena in her 7th grade class production of Mozart’s opera The Magic Flute tonight. When I was in seventh grade, we were doing skits about a farmer and his horse. I cannot help but be impressed.
Recently, a high school friend who’d moved to Portland contacted me. We had lunch, and as a result, he, his wife and his daughter are planning to attend tonight. I had mentioned this to the_child, so yesterday she asked me his name, looked him up on Facebook, and sent him a note introducing herself and telling him how pleased she was he would be coming to the opera, and that she was looking forward to meeting him and his family. This piece of social grace was utterly on her own initiative.
In another frame, the mother of one of her school friends is having a very difficult struggle with metastatic cancer. Though she has not shared her prognosis, hope is growing thin on the ground right now. Yesterday the_child asked me, as she has once before, what her school friend would do without his mother. We had a long, thoughtful talk about cancer, death, parenting, love and community, but especially about the hopes of a parent for their child, and the needs of a child for their parent at the different stages of life. I didn’t have any good answers to give her, because there aren’t any in a time like this.
We also talked about what it meant to “fight” a disease. the_child pointed out that both calendula_witch and shelly_rae had been instrumental in keeping me fighting when I was at my worst. We agreed that love and family were very important.
Who is this mature, reflective, loving human being, and what has she done with my daughter?
Tags: Calendula, Cancer, Child, family, health, Personal, Portland, shellyrae
Posted: 5:45 am Fri April 15 2011 | Comments(2) |
[links] Link salad overeats dreadfully before coming back from Texas
A reader reacts to (among other things) Mainspring — Very much with the not liking of my book. For reasons interestingly detailed.
Fantasy Book Critic reviews of Subterranean: Tales of Dark Fantasy 2 — With very strong praise for “The Passion of Mother Vajpai”, a Green short story by me and calendula_witch.
From Ancient Giants, Finding New Life to Help the Planet — Genetic conservation of bygone forest giants.
Prehistoric Human Brain Found Pickled in Bog — A brain in near-perfect condition is found in a skull of a person who was decapitated over 2,600 years ago.
The bad rap — and the truth — about vaccinations — Some sensible talk. (Via @twilight2000.)
“In God We Trust” (At least until the government gets its act together) — The relationship between government and God, from a different angle. (Thanks to David Goldman.)
The sharia panic factory — More intellectually consistent thought leadership from your Republican party.
The President Is Missing — What have they done with President Obama? What happened to the inspirational figure his supporters thought they elected? Who is this bland, timid guy who doesn’t seem to stand for anything in particular?
?otD: Do you like Tex-Mex cuisine? If not, what the hell is wrong with you?
4/11/2011
Writing time yesterday: 1.25 hours (WRPA, edits to various projects)
Body movement: 30 minute stationary bike ride
Hours slept: 5.75 hours (interrupted)
Weight: 251.2 (amazing given how badly I’ve been eating)
Currently reading:
The Guernsey Literary and Potato Peel Pie Society by Mary Anne Shaffer and Annie Barrows
Tags: Books, Calendula, Cool, Green, healthcare, Links, Mainspring, Personal, Politics, Religion, reviews, Science, stories
Posted: 5:12 am Mon April 11 2011 | Comments(0) |
[cancer] Seeing it from the other side
I have a friend here in Portland who is in his mid-60s. He’s going through a very similar cancer course to mine, albeit significantly more severe, as his primary cancer had already metastasized when first detected. Yesterday I had planned to visit him at his house, mostly to listen, and also to talk about strategies for surviving chemo with heart and mind and body intact.
Yesterday, he was admitted to the oncology ward of his treating hospital for severe complications from chemotherapy. So I visited him there instead.
Without too much detail, he’s lost about thirty pounds in the past eight or ten weeks. He looked dreadful. After two months of chemotherapy, he was worse off than I was at the end of a six-month course. I sat with him for about an hour and half while his family ran errands, and mostly we talked. Slowly, on his part, and listening on my part.
The tiny, hospital smelling room; the infusion pumps gently clicking; the beeping of alarms in the hallway; even the look of the bed — this is his journey, not mine. But I’ve been on a very similar journey, and have even odds of getting my ticket punched for the chemo trail again in the near future. Being there put me in a very odd, fragile mental and emotional space.
Did I look like this? I don’t think so, but I never saw myself from the outside. Did I have the cognitive disconnects he was going through? Absolutely.
I realized anew yesterday how frightening my chemo course must have been to the_child, to calendula_witch and shelly_rae, to my family and friends. I realized anew how frightening it was for me.
He’ll probably be ok, my friend. The complications have been stabilized, they’ve identified the reason for the weight loss and are remediating that. Me, I walked out of there weeping for him, for me, for all the lost years and lives that cancer steals from the living and the dead.
Tags: Calendula, Cancer, Child, family, health, healthcare, Personal, shellyrae
Posted: 5:42 am Thu March 24 2011 | Comments(4) |
« Older Posts |