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Leiomyosarcoma, also referred to as LMS, is a malignant (cancer) smooth muscle tumor. (When such a neoplasm is benign, it is a leiomyoma.)
Leiomyosarcoma is a relatively rare form of cancer, and accounts for between 5–10% of soft tissue sarcomas, which are in themselves relatively rare. Leiomyosarcomas can be very unpredictable. They can remain dormant for long periods of time and recur after years. It is a resistant cancer, meaning generally not very responsive to chemotherapy or radiation. The best outcomes occur when it can be removed surgically with wide margins early, while small and still in situ.
Smooth muscle cells make up the involuntary muscles, which are found in most parts of the body, including the uterus, stomach and intestines, the walls of all blood vessels, and the skin. It is therefore possible for leiomyosarcomas to appear at any site in the body (including the breasts); they are most commonly found in the uterus, stomach, small intestine and retroperitoneum. So… that’s the technical stuff. There’s a good chance that the fibroid tumors that necessitated my hysterectomy in 2010 were related. In July, my surgeon and his team removed three tumors, 12”-16” of intestine, part of the colon, and the gall bladder—but the rest of the cancerous tissue is so wrapped around the intestine that it can’t be removed I am, as you may have guessed, exceedingly unthrilled. At least the odds are low that my family has to worry about it. The major symptoms started in late May, I think, with mood swings, weird bloating and tenderness, and loss of appetite and energy. I went into the hospital at the end of June, too dehydrated to walk or function, came out briefly, went back in for surgery, nearly died—reports are that the doctors said bluntly, “We’ve done all we can; it’s up to her,” and Soren held my hand to pull me through—spent August continuing to recuperate… …and I came home in September, went back in in September, am home again now, and have begun chemotherapy this month, but, as the article says, it’s a resistant cancer. I have no memory of most of the summer, particularly July. This is a good thing, as much of it involved various painful procedures. Family by choice and friends have helped us pull through, too many to name right now, but they have my love and adoration. By the way: I’ve said it before: human beings are made of meat. Skin is very nice, because it keeps the meat on the inside. (Just after the surgery, I looked like uncured back; two weeks later, like aged steak.) I will write more soon, but I did want to get a general clear update out.
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I think I mentioned that I was stressed, had no appetite, and was losing weight? Well, I think 21 June, when Kevin and I went to see Passing Strange was the last time I left the apartment, until I went to the emergency room on 27 June. I got out of the hospital yesterday, after transfusions of four units of blood, a biopsy, and assorted other procedures.
Cancer. Three smooth muscle cell tumors, two in the pelvis, the largest in the abdomen. Current plan is that I see the oncologist on Thursday, the surgeon on Monday, and the surgery should take place about 18 July.
I am alternately resigned and terrified. Various people (Kevin, Victor, Karen, the in-laws, Marci, Jerry, among others) have been offering help in many ways; the big worries are Soren, and money, since I can't work. Still, I go on.
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...if she spins fast enough
then maybe the broken pieces of her heart
will stick together
but ain't no gyroscope can spin forever....
Quick version: the gyroscope stopped, and I had a massive meltdown, partially wrapped around/triggered by tensions and miscommunications with Kevin, and well, yeah, melted down. The exhaustion of job-hunting, care-giving, household maintenance, trying to rebuild/build relationships, the constant grief over having lost my music and my musical community... I finally collapsed.
Fortunately, I have an amazing core group of friends who are hold me together as I try to rebuild. Some stuff, like the relationship with Kevin, is on hold (we still love each other, but there are complications and mutual enabling that we need to sort out, so that we can rebuild on a better foundation); some needs to be restarted, and I need to actually talk more about the help I need.
And then maybe my words will come back....
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I have lost my writing over the past eight months. Not surprising: stresses and sudden changes will do that. I miss playing with words, and posting them in various places, so I hope to get at least three posts a week up this month, to start stretching my muscles again.
****
His eyes were very blue yesterday. Not pure blue: he has sectional heterochromia iridum, a slash of brown cutting through the left iris. Memory wants to make it a dark golden brown, but it may be a deeper brown; I'll have to look more closely again. But the shirt he was wearing was a heathery blue-green weave, which brought out the fairness of his skin, the dark gold of his hair, and, o, so very much, the blueness of his eyes.
I used to dislike blue eyes, to the point where they could quench my attraction to someone. Something about the paleness against the white iris was disconcerting, and I never wanted to look into them. Rich brown eyes, mutable hazel eyes, those were lovely, but blue or grey -- those were too alien.
Eventually, I got past that, though I never really adjusted to the shock of those pale irises. But these blue eyes, looking almost turquoise because of the shirt and my perception, and the spiky lashes, some of them blond at the root, shading to dark gold, some dark gold shading to blonde, creating an amazing aurora around his eyes, and the rosy lips, held thin in an asymmetrically quirked smile, and later, relaxed and full and a deeper rose from kisses given and taken and exchanged... I don't get tired of looking at him.
Sometimes it's best when he's focused on something else, building, shaping, cooking. I can watch and study, and notice the way the hair grows on his arms, and how the light turns it from brown to copper to dark gold as he moves. Or the way his he tosses his hair back without thinking, the heavy ponytail arcing in the light. And then he turns, and sees me watching him, and his lips quirk, one eyebrow raising slightly. He doesn't see what I see, and sometimes I wonder if he understands what a marvel he is. But it doesn't matter. I see him, and I am coming to know him, and loving the learning, and the vision.
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It was grey and foggy a little while ago; now it's a pale blue-grey sky with white clouds shading out of it (is there a word for when you can't see the edges of the clouds, because they're fading so subtly into the sky behind them?) Still no new temp job, and I'm feeling better (been under the weather for several days, including one of high fever and chills), so I'm writing, and looking around online...
...including looking at the LJ of someone I don't like/respect/trust/believe, because they were connected with someone who's appeared in my life a couple of times recently. It's complicated, but while the person with the LJ (I'll call them Lee) is an unreliable narrator, the other person (who will be Pat, as long as we're handing out gender-neutral names) sets off all sorts of twitchy things in my nervous system. Today, I feel strong enough to do the research, and am making little notes of timeline, things claimed, things done --
-- do other people do this? When I am dealing with this sort of situation (someone making me uneasy/twitchy), I will look for information from multiple sources (these days, I can do online research, social media type stuff; in the old days, it would have been asking around fandom, say, and reading old zines), and make notes, with timelines and quotes --
-- and continuing to come to the conclusion that while both of them are probably good people in some ways, both of them are/will/would be bad for me to be around. I'm likely to run into Pat again, as they're the more active party, and attend events that I sometimes go to, but I will avoid them.
Job-hunting online today, laundry, writing, perhaps going to the library and retrieving books, perhaps dinner with Kevin, being gentle with myself, but getting things done.
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Quick, sortakindamaybe placeholder:
I have a temp job, which may be two months, may be six to eight months -- still too early to say. I have a (nother? new?) sweetie, who gets along swimmingly with Soren, and is becoming increasingly dear to me; how this will turn out, again, too early to say. The apartment is beginning to look more like a home than an accumulation of belongings, and I am smiling a lot.
Off to work, on another amazingly foggy Seattle morning. Out before sunrise, into a grey mist where anything could happen.
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Two pound cakes made today (mostly because I've been making them in loaf pans, and splitting the batter): one vanilla-lemon, one cinnamon-vanilla-lemon. I am suddenly wondering whether a ginger pound cake would be doable, and whether chopped-up bits of crystallized ginger would go well in it; and yes, that rather negates the simplicity of a pound cake, but might be tasty.
Last night, I went out with some of the Seattle Girls of Leather (and their friends) to a karaoke bar. It was fun, and being out with a bunch of leatherwomen singing was way cool. On the other hand, I realize, once again, that most of my socializing these days is in queer/queer-friendly, kinky, polyamory-friendly space, and thus I've lost my chops for dealing with straight people. This was made clear after a short conversation-like-exchange with a rather conventionally handsome man, who, near as far as I can tell, was trying to pick me up, with an affect of "You're not my usual type, but I might throw you a fuck, because you're kinda interesting, in a 'not ever introduce you to my friends' sort of way." Technically, there were two exchanges, one after I'd sung the first time, and another after I'd gone up to the stage area to watch someone ace a song.
(Aside: how can anyone ever actually pick someone up in a karaoke bar on a weekend? It's almost impossible to hear the conversation... which led to a hand being put on my waist, ostensibly to move us close enough together to hear each other speak, and which was removed rather firmly.)
People... or something like them.
It's been a frayed/fraying week, but I am hanging in there, hoping for another temp job, or an interview, keeping an eye on Soren and Jane (and Skippy), trying not to worry about health issues elsewhere in the family, and pretending that I am not being attacked by plot bunnies.
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A complicated week, with two interviews (I left both feeling hopeful), minor scheduling bolluxes, and some unhappy news, but overall, not too bad. We're having people over for Vanguard tonight, and I have done shopping and cleaning, and even some baking. Jane and Soren are puttering about, and we have perhaps an hour of work left between the three of us before we'll be ready to have company. (Actually, the house is in good enough shape now that if someone came over early, we wouldn't worry; we just have a few more things we'd each like to do.)
Best of all, so far today, is that when I came home about 10:00 this morning from shopping, there was a honeybee in the pale lavender crocus patch. Bees!
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Well, not solely Soren's friend, but I think of Cory Doctorow as Soren's friend more than mine, in part because they've known each other longer, and because they'ev worked together. To be specific, Soren copyedited several of Cory's books (including Little Brother), and was Cory's favorite copyeditor.
At any rate, if I've got it right, last year, Cory tried to get together with Soren, but spaced that we'd moved west, so had it flagged that the next time he came to Seattle, they should get together. He's starting a tour for his new book, Homeland, out here tomorrow, and got into town yesterday afternoon. With some back-and-forth, we arranged to meet him at his hotel for dinner yesterday, and spent almost three hours catching up. Since the last time they'd seen each other was shortly after Soren's stroke, a fair amount of the conversation was about health issues; health issues, geekery, and children (I am very glad that I decided not to spawn, but love hearing about other people's children), mostly, in the sort of cheerful rambling conversation that could be expected between a guy with aphasia, and another with severe jet-lag at the beginning of a month-long book tour.
(Last week, we had dinner with the usual suspects (Vonda, Kate, Glen), plus Debbie, and L. (who was in town for Potlatch); Sunday's karaoke included a birthday celebration for a beloved regular -- as well as some really inappropriate behavior causing the show to temporarily stop and someone to be thrown out of the bar (I was quite impressed by the way the staff handled it, as well as the behavior of the person who'd been assaulted). This week has a reading, a lunch with a new acquaintance, and two play parties tentatively scheduled. Perhaps it's spring.)
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The reason I asked if anyone would ever consider my skin "creamy" is because of a kinky party invitation, which included the concept of "so we can see your blood flowing across your creamy skin." I observed that the message I received was that the default party participant was not a person of color, and that, as a result, this was not welcoming to me. (I also observed that it's rare for "creamy" to be used to describe a man's skin, so this was implying that the bottoms would be white women.)
This did not go over well.
I am a nasty, squee-harshing, over-sensitive PC sort, who misjudges people, because everyone knows that "creamy skin" always means "smooth-textured," not "light-colored," and I'm just mean mean mean for asking people to think about their phrasing.
You know... I'm okay with that.
I do like the Seattle kink/radical sexuality community, but sometimes they are so damned thoughtlessly white that I can't stand it. A few months ago, someone expressed reservations about a kimono/geisha/tea ceremony party, and got the same sort of "You're too PC; you're no fun!" bullshit.
I dithered about leaving this public, but you know, shit sometimes can become fertilizer if exposed to the air.
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Happy New Year, and all that jazz. I am hoping to write more this year, both in public and in private. Holiday days with Soren's family, old friends coming to town (including realizing that I have two friends who, if it were revealed that they were changelings, I'd simply shrug and think "That explains a lot"), a quiet New Year's Eve at home of baking and playing RA, then some socializing today... and lots of sunlight this morning, to start the year. (Oh, and Rainier visible, and a great sunset this afternoon.)
Soren tried a new anti-seizure med -- did I mention that? -- in December, because the current one messes with his speech/verbal skills. At first, we thought it was working, but it was probably the old one leaving his system, and the new one not fully built up yet; after a week, he had the same grogginess and aphasia, but with the added effects of constant nausea and nightmares when he slept. So, we're back to the old one, and will talk with the neurologist next week.
(The effect of the new med that we didn't get, mercifully, was hair growth.)
Tomorrow, I shall go downtown, and investigate temp agencies in person, as opposed to just sending resumes. Wish me luck.
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Years ago,  nancylebov made an observation in an apa that's stuck with me: she considered how she felt hours, even a day, after eating something as an essential aspect of whether it was good for her. (I'm pretty sure it was you, Nancy). I liked the concept then, and like it now, not just for food, but for life in general. This is in my head because I've just finished reading 1991 in my old journals, and gods, that was a year of both really good things, and major mistakes... but one thing I did learn, though, was that if I was uncomfortable with writing about a situation, and the discomfort remained for several days, then I needed to avoid doing the same thing in the future. Not that I always listened to myself -- "This time it'll be different" is something I've said all too often -- but when I did remember, I almost always found myself happier. Today, Jane is making stew, and we're going to have people over for dinner. I picked up some breads, and a few other things, and am now puttering at the computer briefly, before going up to my room to straighten up the journals. Soren is online: he's started a new anti-seizure medication, so I'm keeping an eye on him. Thus far, though, the good effects outweigh the new negative ones: he's more alert, and words are coming faster and easier. We are cautiously optimistic.
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Exercise
Drink water
Make coffee
Go online: check emails, communities
Job-hunting online
Go with Soren to his physical therapy
Grocery shopping
Laundry, dishes, etc.
CSPC? Karaoke? Out with friends?
Read Other good things: talking with Soren, Jane; library jaunts; cherry tomatoes warmed in the afternoon sunlight. Tonight I got to cook dinner, which is always fun: I feel privileged to be allowed to cook for Soren and Jane, and they "put up with" my mad kitchen experiments -- everybody wins. (Tonight was meatloaf, oven-roasted fingerling potatoes and carrots with rosemary and paprika, and peas; there are brownies and ice cream for dessert, and I got Oklahoma! from the library, which they've not seen, so tonight, or later this week, we'll watch it together.) My moods go up and down, but some nights, things are really sweet.
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Quiet morning here. I'm dithering about going to a writers group this afternoon, as opposed to puttering about at home. The puttering about at home yesterday included some sortakindamaybe brooding, which was unproductive, so getting out seems like a good idea, even though I don't have any writing to bring with me. Other people will, though.
This summer has been complicated, between health and financial issues for the household, and some personal issues for me. A number of people from my past have interacted with me in various ways -- mostly good to neutral -- and I think that autumn is bringing some serious appraisal of what they've brought to my life, and whether even the good outweighs the potential for stress and negativity in some cases.
(I know: this is cryptic, vague, and incoherent, but some of it I'm not willing to discuss in a public post, and there's one person who will not ask for information directly, and I'm going to let them worry. Sometimes, I'm not as nice as I'd like to be -- and sometimes I enjoy not being nice, when someone else is trying to force my hand.)
Right now, Soren's leg is giving him a bit of trouble, but not nearly as much as it was earlier this week. He'll stay in today, and work on his music (he's pursuing everything he can from 1988); Jane has been replastering upstairs, in between watching movies and other arcane rituals; the cherry tomatoes are ripening at a rate of eight to ten a day now, which is lovely; and I should go out into sunlight.
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