Your Saturday moment of zen.
Lizard, photographed in Mendocino County, CA.
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![[info]](http://l-stat.livejournal.com/img/userinfo.gif) calendula_witch ably describes our weekend at Points North amongst her family and the fields of her youth. A marvelous time was had by all, albeit somewhat intense. I took a number of photos, but have just discovered I have the wrong card reader with me tonight, so they will remain inaccessible a while longer.
My day consisted of starting in Mendocino County, CA, being driven down to SFO by calendula_witch, flying to PDX, being met by the_child and tillyjane in the Genre car, dropping tillyjane off at her place, then driving to Pacific County, WA to my parents' beach house. So, erm, 5+ hours in the car and 3+ hours in airport and airplanes. Whew.
Beach house for a week (working the Day Jobbe from here as well as forging ahead on Endurance), then Omaha, then back to San Francisco and calendula_witch on the 17th.
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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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4,800 words in 1.75 hours whilst in transit to California. Manuscript at 70,700 words. WIPs will resume tomorrow.
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calendula_witch and I spent a four-day weekend at Iron Springs, at the writer's retreat and conference there. We were among old friends and new, including davidlevine, kateyule, jackwilliambell, csinman, criada, kehrli, kaerfel, spencimusprime, Chrissy, thecrimsony, a cast of almost a dozen others whose LJ handles are unknown to me or have slipped my mind, and of course our host, karenjunker. Iron Springs is an ageing (to the point of being nigh post-apocalyptic) resort that is completely off the grid with respect to cell phones and Internet, so it was a very focused weekend.
This is where calendula_witch and I first met last year, and such a long, strange year it's been. At least two of the folks there last year tried to warn her off of me (Hah! Take that!), but everyone this year seemed quite happy that we had eventually worked things out and are quite happy our own selves. Lots of walking, lots of writing, lots of workshopping, some good conversation, a guerrilla underwear signing, and a fair amount of romance.
Came back this afternoon and put calendula_witch on a plane back for San Francisco. I'm exhausted, and so is she. I'll fly down tomorrow to hit my second opinion appointment on Tuesday for the cancer stuff, then spend the rest of the week with her. So indeed a grand weekend away, with a grand week to come.
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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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| 2009-06-19 14:32 |
| [travel] Home again, somewhat to my surprise |
| Public |
| books, california, child, china, endurance, escapement, mainspring, portland, travel, writing |
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After a day of incipient but unrealized travel fail, I am home. Three segment flight. Slept through one, wrote through the other two. Got 6,600 words knocked out in 2.25 hours on Endurance. I doubt I'll do more today, but I might be inspired this evening, so I'm not calling that the total yet.
In the Denver airport I spotted a mmpb of Mainspring, which was new from last Monday when the same store had only an mmpb of Escapement. That means the book is still being (re)ordered and (re)stocked fourteen months after its release, in airport bookstores, which are notoriously competitive ecosystems. This one had maybe 300 sf/f titles. I'm proud of my little book.
Also, ran into old friends in the San Francisco airport, coming back to Portland on the last leg of their move-home-from-three-years-living-in-China flight. What is it with me in that airport?
Have a therapist appointment soon, then a dinner with (different) visiting friends, then an early evening of it. kenscholes and jens_fire's baby shower tomorrow, to which I am taking tillyjane and the_child. Looks like a dinner tomorrow night with saycestsay. And of course, more bookage.
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Slept short, hard and not very well. Horrible thunderstorm roaming around here in Omaha at 3 am. Highway was actually rather dangerous due to heavy standing water and strong crosswinds. My feet are soaked. Airline checkin opened late. SFO connection boards 10 minutes after I arrive, which is made of Grade A fail. Not to mention SFO's runway problems of late. Tried to reroute, everything's overbooked. Some woman pushed past me in the security line. Basically, the day is borked. Good thing I have a book to write, and a laptop to write it on.
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A few more things happening, though status hasn't changed.
Visiting the oncologist tomorrow afternoon, not long before the dinner and reading for Green over at Cedar Hills in Beaverton. (Come by if you're in the area...dinner at 5 at the McMenamin's in the Cedar Hills mall parking lot, reading at 7 at the Powell's at the south end of the mall.)
I'm in Omaha next week, but when I get back, I have an appointment on the 22nd with my primary care physician to do annual stuff like cholesterol screening, and get a baseline on my insulin levels. Last year I had some very weird post-op insulin issues which cleared up with the surgical recovery. And we don't know how chemo will affect me.
On the 30th I have the second opinion appointment at UCSF-Mt. Zion in San Francisco. That plus the oncologist consult will probably map out my likely treatment plan. We'll see.
Mentally and emotionally I'm processing very heavily. Most of it's running deep right now. I'm sleeping okay at night, I'm not having big Fear jags or anything. But it's all in there. Coping with mortality issues, my fear of the chemo, my severe anger at the probability being sidelined from my own life for more than half a year.
I know this isn't a done deal yet, but chemo at least seems inevitable whether or not we do the liver surgery. I have to plan, and adjust accordingly.
I'll write more about the emotional and mental transitions when I understand them a little better. For now, I must say that calendula_witch, K— and everyone else around me are being deeply wonderful.
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Here's the current calendar for readings and appearances around Green [ Powell's | Amazon ], which will be released on Tuesday, June 9th.
Friday, June 12th, 7:00 pm — Powell's Books at Cedar Hills Crossing [Portland area]
Saturday, July 18th, 3:00 pm — Borderlands Books [San Francisco]
Friday, July 24th, 7:00 pm — University Books [Seattle]
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Today I am 45 years old. Whee!
Last night Mom and Dad took me, calendula_witch and K— out to the Chart House immediately on our return from San Francisco. The three of us stayed up too late after, as is customary.
Walkies this morning with the_child, then a few minor errands, then JayCon [ jlake.com | LiveJournal ] starting at 1 pm today. You all have fun today. I know I will.
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Walked up Twin Peaks this morning while calendula_witch was at yoga. I normally do this walk around 4 am, so I brought the camera to see what I could see in daylight. There was a heavy fog (for than San Francisco value of "fog" which seems to include low-flying clouds at various altitudes) so I got no look at the usual vistas up there, ( but the flowers were certainly in. )
As usual, more at the Flickr set.
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[cancer] Treatment plans are a winding road
Yesterday I received an email from my cancer doc. He said that the tumor board had met, and recommended that we wait 2-3 months and reimage my liver, rather than proceeding with any treatments at the present time.
This rather upset me, to say the least. I'm willing to go to great lengths to deal with this, but doing nothing doesn't sound like "dealing with". I spent some time last worrying, and trying to frame a response that didn't sound either panicked or surly.
This morning, while walking through the United concourse at SFO on my arrival here, I ran into my doctor, in transit with his wife on their way to a vacation. (Which, if I wrote that into a book, no one would believe me and casacorona would make me take it out.) I mean, what are the odds? This day of all days, with me wrapped around the axle about something very important he had just told me, I should run into him in a city neither one of us lives in. Weird, in a very funny way. The funniest thing was that when he saw me, he just started talking. No "OMG, what are you doing here!" stuff. It was as if I'd walked in for an appointment.
He and I talked for about 15 minutes, having a medical consult right in the middle of the concourse.
The tumor board's perspective was that these liver masses had been detected "too early", and that there was insufficient clinical data on how to proceed with such an early situation. Waiting 2-3 months and reimaging would provide more clinical data, allow better categorization and enable a more precise treatment plan. The analogy they used was, well, this was detected by accident, let's wait until the normal threshold of detection and proceed from there according to established clinical best practices.
I pointed out that my colon cancer had been detected early, and by accident, and this logic was not comforting to me. I also said that since my colon seemed to be acting more aggressively than we expected, I was especially uncomfortable leaving the liver masses in place to grow.
My doctor responded that one of the problems right now, absent good clinical data for too-early detection, was the possibility of an erroneous treatment choice. If we elected for surgery, and later determined that chemo was more appropriate, chemo would have to wait about two months for surgical recovery. If we elected for chemo, and determined later that surgery was more appropriate, surgery might be delayed for up to six months depending on the chemo course.
I follow his logic, but the conclusions make me very uncomfortable. My doc did say that the door was not closed to more aggressive treatment plans, but any further action would be at my insistence. We agreed to meet on this at my post-colonscopy consult.
Here are the steps I am taking:
- Have requested the double length appointment.
- I will be meeting with a professional contact of calendula_witch's who has survived this same set of cancers. Seeking his take on the situation as a whole, and specifically on the proposed treatment plan.
- Have called the insurance company to confirm that I'm covered to seek a second opinion with a different cancer treatment center, and that I don't need any special permission or preapproval. They have confirmed this, and also suggested I talk to their cancer treatment group.
- Have called the cancer treatment group, expecting a call back next week. They have more cancer centers "in network" than the general plan, and will offer me possible referrals.
- I am considering the Hutchinson Cancer Center in Seattle and the UCSF Center at the Mt Zion unit in San Francisco. Hutch is not "in network' on my plan, UCSF is; but Hutch may be "in network" for the cancer treatment group.
Mostly now I'm trying to wrap my head around the idea that a disease where every chance of success is based in part on early detection and treatment is now being treated with a "wait and see" attitude. This makes me very emotionally and mentally uncomfortable, even if it is a clinical best practice. More as it develops. And, erm, hooray for the mighty power of coincidence. I'm going into this weekend a lot less uptight than I otherwise would have been, for the sheer improbably happenstance of crossing paths with my doctor today.
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So far this morning my magical Internet-slaying powers have not manifested. Waiting for the flight to San Francisco. Usual security line grumbles — "No, really, the Frequent Traveler lane is for people who that they have to take their shoes off." The bookstore inside D concourse had three paperback copies of Mainspring, which I signed. None of Escapement, oddly.
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Had a very nice dinner with Mark Siegal and one of my work colleagues here at the hotel. Good conversation, ok food, eccentric service in the restaurant. All good. Tomorrow, off to San Francisco rather a bit early in the morning.
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In Baltimore now. My colleague and I were in the wrong city in Delaware, which took 75 minutes to correct this morning. All went well, now hanging in Hilton BWI Airport. Dinner at 7 if any of you Balticonners are in early, or local fen/writers want to come by and nosh with me.
And yes, I do know that Balticon is here tomorrow, but calendula_witch will be going to BayCon tomorrow. While I love you all here on the East Coast, she's there, you know?
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| 2009-05-16 10:30 |
| [personal] Saturday unfolds |
| Public |
| calendula, california, cancer, cheese, child, conventions, family, omaha, personal, portland, travel |
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calendula_witch, the_child and I are off to do Saturday things. Some shopping, some hanging around, a cheese expedition.
We're winding up at my parents' about 5 for a cancer party with Mom and Dad, tillyjane (my other mother), lillypond, The Niece, The Niece's dad and his sweetie, kenscholes, jens_fire (and onboard twins!), and the delightful K—.
calendula_witch is back to San Francisco tomorrow morning. I'm off to Omaha on Monday, then Delaware on Wednesday (anyone down for dinner in Dover Wednesday night?), then San Francisco next Friday so calendula_witch and I can hit BayCon. Cancer news when I have it; still waiting on the PET scan results as well as the biopsy on the polyp.
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