I've had some things to say about cancer, about health insurance, about Endurance, but this chest cold is running me ragged and having me sleep 11 hours a day. Regular blogging service will resume as soon as possible.
Meanwhile, ![[info]](http://l-stat.livejournal.com/img/userinfo.gif) calendula_witch finished a book. Go give her some love.
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My world's starting to get narrower as I approach chemo. I remember this exact same effect taking place in the context of last year's surgery. The prescribing consult will be on 7/27, with various things to happen thereafter, such as installing the port in my chest and scheduling the infusions.
My sense as I go through various activities runs along the lines of well, this is the last time I'll do this for a while. Also, my underlying fear of dying from this whole experience has kicked back up. (Not like the mortality statistics are exactly uplifting at the moment anyway.) So sometimes I find myself thinking well, I may never do this again.
It's not that my fundamental optimism has faded, nor my energy and drive. This is like a layer of fear lacquered over that. The Fear, perhaps, spread micron thin and contaminating everything. A reaction to the increasing inevitability of this process. I'm still a bit abstracted from my core emotions, and spending the past two weeks with calendula_witch has helped a lot. We'll see what flows next. It ain't easy.
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Days 20 and 21 were lost to our grand adventures in Points North. Day 22 today yielded only a disappointed 2,100 words in an hour of effort. However, under my new weekly rubric, that makes 21,600 words for the week, well in excess of my 17,500 word target. I'm now at 87,500 words. Given that chemo shouldn't start before early August, I'm confident of getting this draft wrapped before cancer eats my brain.
( In the mean time, a bit of WIP: )
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calendula_witch and I are heading for Points North in a few minutes. This is where I get to meet the family. I have promised not to wear my underpants on my head this time. I will be partially or fully offline through Sunday night, so further updates will be irregular at best. Writing time may also be at a premium, but as I've already met the week's goal, that should be cause for only minimal alarm.
In other news, my mom is fine. ER visit was a false alarm.
In other other news, the inside of my head is a complicated, scary place cancer-wise, with the chemo train now building up a head of steam at the platform. When I understand myself a little better, I'll talk about the emotional process, as I do. For now I'm happy to love and be loved and have a distracting, still-healthy weekend.
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More news today from my oncologist. Unless something crops up to contraindicate, we're committing to chemo. This is based on the MRI results, and her further discussions with my cancer surgeon about my case.
I have some followups in San Francisco the week of 7/20, including further imaging studies of the various sites, and a full chest imaging to evaluate the lung spot and see if there are more lung spots.
I meet with my Portland oncologist on 7/27 to formally prescribe the chemotherapy. On 7/29 I have the chemotherapy orientation class. Sometime thereafter (as yet unscheduled) I will have the port put in — I'll be a Harkonnen! — then commence a six month course, with a break at midpoint for evaluation through further imaging studies.
So sometime in early August I'll be entering the magical land of chemo. This makes WorldCon very iffy, though we'll look at scheduling issues. I'm not going to delay treatment just for the sake of a Con trip, but if it all fits together, that can be my hurrah. I am probably good for all commitments before then. On the plus side, I can probably get the first draft of Endurance wrapped before the killjuice starts melting my brain.
In other news, my mom is in the ER in Portland tonight with a blood clotting issue which is not particularly serious now but needs to be addressed before it becomes serious. I, of course, am in San Francisco, and my sister is at the Washington coast.
Never rains but it pours around here.
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10. Cancer strikes when you least expect it.
9. Like a zombie lurking in your basement, cancer is with you no matter what you do.
8. Cancer scares the hell out of everybody around you.
7. Cancer isn't contagious, but it spreads anyway.
6. Cancer turns your body into an enemy of the state.
5. Cancer makes the familiar terrifying.
4. Cancer is always on the wrong side of the locked door, with you.
3. No matter how hard you hit it with a shovel, cancer can come back.
2. Somehow there's always blood involved.
1. Cancer eats your braaaaaaiiiiiiin, no matter where in your body it's happening.
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Spoke on the phone today to the oncologist from my core team in Portland. The MRI read is back in, and supports the cancer diagnosis without being fully conclusive. She indicated she was leaning toward confirming the diagnosis and proceeding with chemo, but that my case would go before the tumor board (again) tomorrow. I'm expecting a call from her after that meeting, which will open some doors and shut some others.
This news was very upsetting to both me and calendula_witch. Not much has changed in truth, not yet, and this is the path we've both expected, but it feels as if we've passed a tipping point into a much darker place.
More tomorrow.
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The magic cancer 8-ball continues to say "Reply Hazy, Try Again Later." calendula_witch and I had my second opinion visit today with the oncologist at UCSF. Her take on my situation was roughly the same as my OHSU team's take. That is to say, suspicious situation, but too soon to tell for certain. She seemed more focused on the issue of there being multiple possible sites, whereas my oncologist in Oregon was more focused on the liver site. This doctor was careful to hold to the line that as this was still unknown, it would be premature to call this cancer without affirmative evidence.
The radiology group here will read my existing scans and present their own report. I'll do followup scans both at UCSF and OHSU (they use different CT protocols, which the oncologist at UCSF thought might be relevant), and followup consults at both institutions in the second half of July.
In other words, the results were inconclusive and I continue to be in a state of ambiguity. No factual variations. It is somewhat comforting that a completely different practice and medical team came up with essentially the same answer — hold and re-image. But I'm still in the grip of the magic cancer 8-ball for the time being. A bit fashed, run down, even depressed at the lack of progress or resolution.
Onward I go.
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Flew into San Francisco last night. Plane was only a little late, and the airport van was completely full, so it took a while to get home to calendula_witch. Whereupon I discovered her in the Witchnest with the building alarm shrieking and the power out. Some fiddling with the alarm panel took care of the shriek, but the power was a couple of hours coming back. This crimped our evening routine, but we successfully improvised.
This morning I have the oncologist appointment here at UCSF for the second opinion on this year's New Adventures in Cancer. Though I've been looking forward to this, I find myself tinged with dread today.
A lot of new words have entered my life in the last fourteen months. I didn't used to be able to pronounce "metastasis", and "tumor" wasn't something that came up in conversation very often. Likewise "resectioning" and "chemotherapy" and "oncologist." Hush words. Scare words. The kind of words that if you're talking in the elevator or on the telephone in the departure lounge, people around you fall quiet and strain to listen while pretending to unobtrusiveness. The experience of cancer has inflected everything from my travel schedule to my vocabulary. I don't suppose I ever understood the miracle of my good health until it was undermined by the enemy within.
Another thing I've been thinking about is the unexpected nature of all this. Cancer is like the Spanish Inquisition in my life. Prior to April, 2008, if you'd asked me to list my likely causes of death, I'd have put heart attack first, followed by a more generic listing of cardiovascular disease, followed by a none too imaginative set of possibilities ranging from falling in the shower to airplane crash to death by jealous lover.
But cancer? No one in my family dies of cancer. Not that I'm dying now. But no one in my family gets cancer. We're a heart attack family, pure and simple, on both sides. As a doctor of mine said years ago, we don't live long enough to get cancer.
So the rearrangement and derangement of my life continues. I'm coping pretty well with the current uncertainty, and rather afraid of finding a bad certainty this morning. Or in last week's MRI, whenever the read comes in. Or the upcoming CT scans.
The only thing worse than a bad certainty would be continued uncertainty. I'm tired of the unexpected, at least in this regard.
Life is for living with all the knobs set on full tilt boogie. I'm doing my best, damn it.
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Ever had an MRI? Me neither, until last Thursday. Let me tell you...
As previously discussed, the MRI is part of the ongoing diagnostic process of the new mass in my liver which is probably a metastasis of last year's colon cancer. This hasn't been confirmed yet, but there are no good (or even bad) alternate theories about it. We're trying to nail down the diagnosis before pulling the trigger on surgery and chemo. Having previously subjected my internal organs to a CT scan and a PET scan, my medical team determined that it was time for me to go for the trifecta and complete the set with an MRI scan.
I've for years been generally aware of what an MRI is and does, but I'd never had occasion to experience one for myself. My first clue was the fact that I was asked at least five times by four people if I was claustrophobic. My answer was, "Not clinically so, no." My answer should have been, "Not yet."
Last Thursday morning at oh:God:30, calendula_witch and I toddled over to OHSU to sign in for my MRI. tillyjane met us there. I was checked in via the usual manner, though the disclosure form was kind of bizarre. A lot of really weird questions, all aimed at answering this life-affirming query:
"Do you have metal anywhere in or on your body that will be ripped out of your still-warm flesh by our giant magnet like a zombie going for your brains, you goofy sack of shit?" To which I dutifully replied, "Um, no." I didn't mention the CIA mind control implant, either. I was then permitted the delight of another IV, which led to a delightful conversation about the virtues of teflon needles versus steel needles. (I am the kind of patient who asks a lot of questions.) After that I was escorted into the Giant Magnet Room. An MRI a biiiig white tube, about three inches wider in interior diameter than the width of my hips, as it happens. I was strapped down to a motorized pallet, much like the ones used for CT and PET scanning. Except this time, I was really strapped down. Bracket device against my back and against my abdomen. Sensor lead across my chest. Leg straps. Waist straps. Arm straps. Chest straps. Headphones. Panic button in my left hand. This is not so bad, until you consider the fact that I am a born fidgeter. Anyone who's been around me for more than five minutes knows I'm constitutionally incapable of sitting still. Ok, I can suck up it. Cancer isn't going to win just because I can't hold onto my shit for a little while. Then the MRI tech ran me into the little tube. I felt like one of those 1950's movie cutaway shots where the train speeds into the tunnel, then the waves explode in white spume, to stand in for the sex scene. I mean, talk about loading the torpedo tubes. The curve of the top of the tube was two or three inches above my nose. My head was strapped in, so if I rolled my eyes way back, I could see a fingernail sliver of room light and open space somewhere behind me. If I rolled my eyes forward, I saw more tube. All the while, a little voice in my ears kept telling me not to breathe, while a small army of dwarves played the anvil chorus rescored for magnets and medical equipment. For forty-five freaking minutes.Whenever it got bad inside the tube, or I started seeing red flashes behind my eyes, I would resume the silent mantra, "Fuck cancer, fuck cancer, fuck cancer." If I were into being a bound sub, I might have paid good money for this experience. (Actually, I did pay good money for this experience, or at least my insurance company did.) As an ordinarily ambulatory human being of strong mind, fidgety body and toppish tendencies, this did not sit so well. Every now and then the table would move a few inches. I would pray for daylight. The hammering would begin anew. I would be told when to breathe, when not to breathe, admonished to hold still. What, I have a choice? Closing my eyes most of the time did help a little, and for a while, I actually managed to meditate. Finally, when I emerged exhausted and sated from being thrust deep inside the tube, I knew how a lone sperm feels after swimming upstream to spawn and failing. When I got out, I asked the tech if they had to drug some people to get them inside the machine. She laughed ruefully and said there were folks who simply couldn't get in the MRI, even under sedation. No results yet, but as calendula_witch will attest, I wasn't right for most of the day. As annoying as the PET scan was in some ways [ LiveJournal ], the MRI was a lot more overwhelming. Big science, annoying your hindbrain up close and personal. Necessary, not evil, but overwhelming.
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calendula_witch arrives this evening. At a very stupidly early hour of the morrow we have my MRI to chase this liver mass a little further down the cancer road. Then we're off to Iron Springs until Sunday evening. I expect to be off the grid for almost four days starting tomorrow morning, as I believe there is neither Internet nor cell service where we're going to be.
So no link salad, no other wit and erudition, and slow-to-respond email. Y'all play nice while we're gone. Talk amongst yourselves.
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A bit of interim updatery on the cancer front:
None of the material facts and ambiguities of my case have changed in the past couple of weeks. In summary, we have three areas of concern, and several paths towards an outcome.
There's a small (0.5 cm) spot on my lung, which may be just old scar tissue. We don't have good prior imaging for reference on that one.
There are multiple sites in my lymph system which are not strongly represented, meaning that if they are tumors, they're very small. These may have been a transient infection at the last time of imaging.
There's a somewhat larger (1.0 cm spherical) spot in the upper lobe of my liver. That's new from last year's scans, and while neither of my docs has so far been willing to conclusively call it cancer yet, there's no credible alternate theory, and a fair amount of circumstantial evidence that it is.
The next set of steps include a general physical today, to baseline my glucose, cholesterol and other general health indicators before any cancer treatments. (Last year's surgery played merry hell with my insulin levels, and at the time, we had no baseline data, so it wasn't clear if I was pre-diabetic prior to surgery.) Lab results are already in, glucose levels are excellently appropriate, cholesterol levels are iffy but not disastrous.
Thursday morning, very early, I have an MRI here at OHSU. That is another attempt to determine the status of my liver spot. As I understand this test, the results will either be continued ambiguity, or confirm that it is a tumor.
Next Tuesday (6/30), I have a second opinion followup with an oncologist at UCSF. Again, my understanding is that the outcome will either be continued ambiguity, or a more aggressive diagnosis.
Around mid-July, if we're still not at a firm diagnosis, I have another CT scan, specifically to review the three sites of interest and see if any of the spots have grown or progressed. That would confirm their tumor status.
Insofar as I can tell, no one is prepared to rule out cancer. We don't have an alternate theory on the liver spot. But as my oncologist said, we don't do chemo just because we're worried about something. I don't see another outcome (and neither does my cancer surgeon, he's more confident of the diagnosis), but they want more data to confirm the diagnosis and the treatment plan.
Once the treatment plan starts up, all bets are off. Most likely path is liver surgery, followed by chemotherapy once post-surgical recovery has proceeded far enough. That will sideline me for weeks with the surgery, and slow me down considerably for six months or more with the chemo.
If none of these steps finalizes a diagnosis, I'm not sure what will happen next. I'm absolutely unwilling to walk away from a novel spot in my liver. Especially given my established cancer history.
All of the above decision points and next steps have made forward planning a bit of a bitch. Working on the initial draft of Endurance right now is purely an act of faith on my part. I've stopped doing any travel planning post-WorldCon, for lack of desire to accumulate nonrefundable tickets I'd just have to ditch. It's affecting Day Jobbe commitments.
I call this "the cancer hammer." I'm waiting for the hammer to come down (or, possibly, be taken off the table). The uncertainty is challenging as hell.
So I live, I love and I write.
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Forms, forms, everywhere there's forms.
Just spent half an hour tacking pen-and-ink paperwork forms for the second opinion consult on 6/30 down in San Francisco. All of these were topped with a preprinted label containing most of my pertinent identification information, including insurance data. The silliest form was the one with this selfsame label which required me to write out by hand my pertinent identification information, including insurance data.
The medical system: our culture's expanded version of barbershop mirrors.
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Working on Endurance has done wonders to chase the cancer goblins out of my head. I can't actually write when I'm in the middle of being pissed off or actively afraid, but with even a little distance from the immediacy of those emotions, the book calls me back.
Likewise, I find myself approaching this book with an intensity that is unusual, even for me. I figure this is Fred burning off nerves in the text. calendula_witch reports that the book continues on target and appropriately smooth and interesting, so I know I'm not just spinning wheels here.
We're not talking about writing-as-therapy, per se. My issues aren't being gamed out on the page, at least not consciously or directly. (They can scarcely fail to inform the mood of the book, of course.) More like the act of writing is therapeutic.
I hope this never becomes a struggle for me. Laying down words on a page is such joy, and I need that in my life right now perhaps more than I ever have. It's an interesting phenomenon, how this all fits together.
PS, for those of you who have not yet read your newly-acquired copies of Green [ Powell's | Amazon | Barnes & Noble | Borders ], Endurance is named after the ox in Green, with nothing to do with either of my cancer experiences as that book was drafted before the first outbreak. In fact, the ox is named after the cat in Gwyneth Jones' Divine Endurance, a book I dearly love.
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Woke up this morning around 4 am with Endurance much on my mind. I cut my walk to half an hour, though I kept my stretching and meditation sequence, to spend more time in the book before Day Jobbery. Managed to get 3,500 words down in 90 minutes of writing, broken in the middle for a quick brekkie downstairs. I'll write more tonight, after a work dinner, so I can peg my two-hour mark for the day.
I am very conscious of deadlines and time here. The cancer stuff will quite probably catch up to me before I can finish this draft, but at the moment I'm still running ahead of the incoming tidal wave. I'm not sure I've ever been this motivated to sprint. The book won't be due until next May, but if I can get the first draft pounded out this summer, all I have to do during (or after) chemo is work the rewrites.
As Samuel Johnson said, "Nothing focuses the mind like a hanging."
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Took a long walk this morning, 70 minutes. The owl that lives along the eastern end of the Big Papio Trail had a lot to say, while the moon hid all but the barest hint of her face behind a high lace of clouds.
I don't tend to do directed thinking while I'm exercising. It's more like moving meditation. Some stuff bubbling about Endurance, obviously. More cancer. Fear and worry not from the deep layers — not The Fear, in other words — but of the more intellectual kind. How much will this hurt? How will it affect my job? What about the people who love me?
No answers, course. Those will come as needed, in their time. I roll around in the tough stuff, so that when the hammer comes down, I'm ready for it. No point in wishing it away.
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More on Death of a Starship — From MonkeyBrain's web site.
kenscholes with a flash fiction contest — Note the category described as "MOST LIKELY TO BE JAY LAKE IN A BRILLIANT DISGUISE".
This weekend's cancer updates:
A Visit with the Oncologist: [ jlake.com | LiveJournal ]
The Edges in My Head: [ jlake.com | LiveJournal ]
calendula_witch earns a purple heart — Or at least a purple toe...
Revolutionary Medicine — About the possible ongoing changes in healthcare.
?otD: Where in the world is Jay Lake?
6/15/2009 Body movement: n/a (travel day, airport walking) This morning's weigh-in: 219.0 Currently reading: The Human Disguise by James O'Neil
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I promised an update on the emotional journey of the past week or two, and so, here it is.
First of all, the big secret which should surprise no one. I am not brave. I am not fearless. I am an arrant, craven coward who loves my life beyond reason. The measured, thoughtful responses you've seen from about my cancer have been real, but they haven't been the whole story by a long shot.
I spent over an hour last night in calendula_witch's arms, sobbing. I cycle through outbursts of fear, grief and rage. Though in truth, most of the time I'm fine, and I can even go a day or two at a time without thinking of it. Much.
No matter what this is, it's very early stage. Even at the worst case, my personal numbers are much better than the medical statistics. As my mother said, I've never been at the center of the bell curve in my life, why would I start now? And we're a long way from worst case. The lung spot is just as likely to be a scar. The lymph activity could have been a transient infection. The liver is the most difficult to explain away, but it's also not fuly confirmed.
If I come out of this clean, I'm going to be embarrassed as hell. But embarrassed beats the hot snot out of surgery and chemo. By the same token, surgery and chemo beat the burning bile out of continuing down the cancer road untreated.
So where have I been? In some dark places and some very bright ones. My fundamental nature is quite positive. I can go pretty 'splat', but I always bounce back up. I cope by looking over the darkest edges, then walking back from there. These edges are pretty damned dark. But the love of my family and friends, of the_child and calendula_witch, of my virtual community and total strangers: that carries me a long way.
Maybe this will come out clean now, all turn into a combination of scanning errors and the mighty power of coincidence. I hope for that, but I can't afford to think it, to plan for it. That's not where the main chance lies right now. I have to look ahead and sort through what will happen next.
In other words, a short and winding road with a lot of weird emotional weather, but some very bright lights and brilliant hearts serving as my guide.
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For those playing along with the home game version of "Where's Jay", the next few weeks have slipped into startling complexity. In brief:
6/15-6/19 Omaha, NE
6/19-6/25 Portland, OR
6/25-6/28 Iron Springs, WA (with calendula_witch)
6/28-6/29 Portland, OR
6/29-7/5 San Francisco, CA (with calendula_witch)
7/5-7/12 Ocean Park, WA (with the_child)
And, of course, working two hours every day on Endurance as I go along.
I'm currently scheduled to go to Omaha 7/13-7/17, then back to San Francisco 7/17-7/21, but that's all a bit iffy depending on where medical stuff goes. In that vein, I have cancer-related appointments of various kinds on 6/19, 6/22, 6/25 and 6/30. By early July we'll hopefully have a much better idea of what comes next on the cancer front, which in turn will govern whether I make it to WorldCon and so forth.
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mondyboy on when fandom doesn't suck
Of garbage, seagulls, civic pride, and nerdview — Language Log on the processes of culture and language. We have this problem in sf/f sometimes, I think.
Nails — Game? Art? Internet artifact? (Thanks to willyumtx.)
Biz Stone answers your Twitter questions
?otD: What's the name of that Journey song? You know, the one that sounds like...um...all the other Journey songs.
6/14/2009 Body movement: n/a (Took calendula_witch to the airport, will walk later) This morning's weigh-in: 216.2 Currently reading: The Human Disguise by James O'Neil
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