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It hasn't been my best week. Cancer follies are on hold til July 20th, from a purely medical perspective — appointment then for a follow-up CT scan is the opening measure of the next portion of this symphony. But I spent this past week at my parents' beach house on the Long Beach peninsula of scenic Washington State, mostly being quite ill with an upper respiratory infection. This did not lend itself to rational consideration of life options, though I did get several very good conversations in with Mom and Dad nonetheless.
Lots more to say, and I'll be saying it here, but this morning I've been noodling with the idea of all the things I'm afraid of. Many of these are no rational, but rationality has never been a prerequisite for existential dread. Most of them are not formless. My fears have very definite form, thank you. (Wonder Twins power activate: in the form of a tumor!) But I find it useful to drag the fears out into the light, turn them over a few times and think about them. That seems to disarm some of their power, and makes me feel better.
So, things I am afraid of:
- Dying soon
- Dying slow
- Dying fast
- Not seeing
![[info]](http://l-stat.livejournal.com/img/userinfo.gif) the_child graduate from high school (or even 8th grade)
- Chemo head
- Playing whack-a-mole with this shit til it kills me
- Losing myself in a fog of illness and never coming back
- Losing my ability to write
- Losing my desire to write
- The look in my parents' eyes
- My daughter's tears
- That I'll be so sick I won't be attractive to calendula_witch any more
- That I'll spend the rest of my life smelling sick
- That I'll get too thin on chemo
- That I'll grow too big on chemo
- That I won't be able to work and my life will collapse financially
It goes on from there. You get the idea. Hamsters chase one another through my head with alarming alacrity. Irrational or not, they're real. As chemo grows closer, I dread it more and more. The next CT scan will tell us whether I have tumors on my lungs. I dread that. Every piece of bad news is a strike against my mortality. My life. Myself. Still, I carry on. Because there are no other choices except to spit at it and fight. I am so tired of being afraid.
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calendula_witch's brother, with the bee stinger carefully pulled from his hand. He was stung while playing darts, dropped the dart, tried reflexively to catch it, and stabbed himself in the hand several times during the resulting mayhem.
She sure knows how to show me a good time.
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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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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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It's amazing how time flies by when you get up at 3:40 in the morning. And that was me sleeping in... It's barely past noon and here's what I've accomplished so far today:
- Exercised
- Morning blog roll
- Shower (with hair wash, takes a while)
- Two and half hours on Endurance
- Cooked breakfast for self
- Worked on story critique for two friends
- Had a sweet phone call with calendula_witch
- Submitted the final story for The Sky That Wraps
- Caught up on email
- Went to grocery store
- Did laundry
- Made week's salad and lemonade/limeade
- Cooked lunch for self, the_child and her friend I—
- Changed clothes for the Scholes baby shower
Shortly, off to the baby shower with the_child and tillyjane. Dinner with evening with saycestsay, and a possible camillealexa sighting. Tomorrow, more Endurance, a Father's Day Brunch with the usual suspects, some cancer paperwork for my upcoming second opinion appointment, a final pass through Iron Springs critique, draft another Tor.com blog post and read through calendula_witch's Nightcraft Mother dailies to date. Week to come: Doctor's appointment Monday. calendula_witch arrives Wednesday. MRI Thursday. Then off to Iron Springs!
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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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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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Today:
- exercised
- worked full day of day jobbe
- had dental appointment for x-rays and cleaning
- lunched with parents
- had hair appointment
- took the_child to her extreme theatre troupe
- took the_child to school for her class play
- watched the_child's class play
Why am I tired?
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Had a session with my therapist yesterday. I'll be seeing quite a bit of him for a while. Also had the Cancer Talk, Year Two with the_child. Which was far less traumatic than I'd expected, though she does have a tendency to run silent and deep on the Big Stuff, then come back later with some astonishingly lateral insights and questions. At my therapist's recommendation, I think I'll be reaching out to Mother of the Child's zen master for some instruction on meditation. (Yes, MotC really does have a zen master, Soto Zen sect for those of you who care about such things. I'm friends with the Reverend as well.)
Had an outbreak of the Fear yesterday morning driving back from the gym. That was a little rough. Near-hysterics do not mix well with traveling 40 mph on a narrow road with no place to pull off. But the top was down and REM's "Drive" was on the CD player, so, well, there I was. I'm also having no trouble already seeing the gifts even this year's cancer is giving me, but that sliver of wisdom is being offset by my general anger at the whole thing.
Callbacks are now late from both my cancer doctor's scheduler and the cancer case management people at my health insurance carrier. I'll launch followup calls today. calendula_witch continues to be a bedrock of loving support. K—, kenscholes and all my friends and family likewise. If love could cure cancer, I'd be the healthiest son of a bitch in North America.
More when it happens.
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Thinking more about cancer and what it means to me and everyone around me.
As I observed last year, cancer is a social disease. That is to say, it has an impact far wider than the patient. This is true of all illnesses and injuries, of course. Anyone in pain or danger affects their matrix of family and friends. But there's a special horror to cancer. Almost in the Lovecraftian sense. My body is trying to kill me, literally, and the danger is completely sui generis. This isn't a bacterial or viral invasion, it's not trauma, it's not an external assault or a wounding. It's not a function of a perceived or actual misbehavior or self-maintenance on my part. It's me, attacking myself, at the most fundamental levels.
In that sense, cancer has more in common with diabetes or MS or CP or arthritis. All of those conditions can be crippling, literally or figuratively. Fatal even. But cancer has a hold on the popular imagination that is almost unrivaled. I have looked back over my own fiction and noted how many times I've used the disease as a character element or a plot device or backstory. I don't think I've ever written about diabetes or MS.
There's something terrible about growing your own monsters. A birthing of a potential death. But the hardest part of cancer, based on my experiences last year, is how it affects those around me. Seeing the desperate fear in my mother's eyes when the doctors brought me some of the worst news when I was in the hospital. Watching the misery of my friends. Cancer is not just attacking me, it's attacking everyone who knows or loves me.
We can fight back. We will. This isn't fatal. Hell, the liver problems aren't even fully diagnosed at this point. Other outcomes are possible. The polyps have returned, though, with their malignant little calling cards.
The bitch of this year's New Adventures in Cancer is the sense that it may never end. Now we know it comes back, like some brainless zombie in a B movie. Car accidents only happen once. In my life, and in the lives of those around me, springtime is in danger of becoming cancer season.
I'm going to kill this stupid bastard disease if it's the last thing I ever do.
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Since I've been quite frank about my experiences in these New Adventures in Cancer, I thought I'd lay out where my head is today. A very long walk on the Papillion Creek Trail gave me plenty of time to sort through what I'm thinking and feeling, inasmuch as that's possible right now.
First off, I am intensely relieved to have the potential cancers down to just the liver anomalies. My colon's continuing attempts to kill me are very much at issue, but that's not a battle I need to fight today. Hopefully the lymphatic stuff will stay firmly in the "false alarm" category. The liver stuff will suck, a lot, but it's constrained. At the same time, I'm also very angry about it. I think this is a healthy anger, falling somewhere between "borderline psychotic will to live" and "kill them all, God will know His own." Part of what I need to stay mentally, emotionally and physiologically motivated to beat these little tumorous fuckers to death.
Secondly, I'm realizing that the battle of the colon will be a continuing process. Part of how I coped with last year's Excellent Cancer Adventure was by unconsciously assuming that it was a one-time event, an anomaly, and that I'd return to a normal existence at some point. Clearly this is not the case. This is resetting my emotional horizons in fundamental ways. I have been planning my life in decades, assuming at least til age 70 for active, productive healthy daily existence, and at least age 80 for reasonable health and productivity. While that's not off the menu — everything going on now is controllable — my risk factors are going to be much higher than the general population for the foreseeable future. It's not that I think I'm going to die young. It's that I know I might. So my sense of living for the day, already very strong since last year's struggle, has been sharpened. I grow monsters in my gut, and sooner or later one of them may kill me. I can live with that, I just need to live in the now, however long the now turns out to be.
Third, the outpouring of love, support and affection here on the blogs, via Twitter, via email, via telephone, in person — it has been overwhelming. Sort of like going to my own funeral, Tom Sawyer style. I have not even pretended to keep up with everyone, for which I am sorry. I want to say the sense of community has been a very powerful part of my ability to weather this experience thus far, and will be a critical aspect of these next phases of the process. Thank you, everyone.
Meanwhile, life goes on. I have been working with casacorona to ensure that Pinion stays on track, even if I'm in surgical recovery or chemotherapy. calendula_witch will handle the CEM if needed, likewise galleys. The Day Jobbe is being very supportive and constructive. My family is ready to fight tigers for me. the_child and her mother are giving me close, loving support. I will need a turnstile and a door warden to manage my friends if I am laid up in the hospital or at Nuevo Rancho Lake for a while. kenscholes and K— are being dear beyond measure in propping both me and calendula_witch up. calendula_witch and I are looking at our near and mid-term plans to make sure we can do everything we need to, and keep me properly cared for as required. After last year, I know how to do this. Not the kind of experience I'd wish on anybody, but I've had it, so I may as well use it.
Thank you, every one. And most especially, thank you to calendula_witch, kenscholes and K—. I love you all.
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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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Very long night, thanks to the magic of Visicol. I did finish Engine Summer while camped in the small room, about which more anon. calendula_witch got to sleep well before my body would let me do the same, but since I sleep a lot less than her (or most other people, for that matter), that more or less balanced out.
Getting ready now. Mother of the Child is driving us to the clinic at 11, picking up the_child at school along the way. I'll know more this afternoon. Everybody is highly optimistic. Including me, Fear and Doubt notwithstanding.
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| 2009-05-09 05:46 |
| [personal] Saturdatery, and lack of Pinion |
| Public |
| books, calendula, child, family, health, personal, pinion, portland, work, writing |
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No Pinion effort yesterday. I had medical and errandy things to do after Day Jobbery. Once stuck full of holes and properly shopped for calendula_witch's visit next week, I took the afternoon and evening off for some very pleasant social time.
Leaving shortly with Mother of the Child to spend the day up on the mountain at the Fifth Grade Olympiad. the_child will be competing in a number of events. I don't think I'll be back until this evening, which definitely puts Pinion at risk today as well. Good thing I'm on track and ahead of schedule!
Mother's Day luncheon tomorrow for tillyjane, lillypond, and MotC. Me, the_child and the Niece will be taking them out. Other than that, a few hours of furiously busy pre-calendula_witch house cleaning, and all Pinion all the time. I'll have feedback by then from khaybee, and calendula_witch is passing me edits as she works through it.
Back on the 'tubes quite a bit later today. Y'all play nice while I'm gone.
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