That which doesn't kill us merely postpones the inevitable.
Saturday, September 29, 2007
Cancer Girl The Untouchable
Back when I first started chemo, when I was miserably sick and weak and bald and immunodepleted, trapped in the house, lonely, and bored out of my shiny white skull, I used to lie in bed listening to dance music on my iPod. I would lie there and cry because I wanted so much to be able to go out dancing. I wasn't even sure yet that I was going survive and get well, I didn't know if I would ever have another opportunity to dance before I died. The odds were not as encouraging then as one might wish. But odds be damned: I couldn't help it, I still dreamed every night about a time when I would dance again.
One day in a fit of wild optimism I went on eBay and bought myself the most beautiful pair of red cowboy boots I could find. The day they arrived in the mail my feet were too swollen from the Prednisone to even try them on, but I set them on top of the tv where they would be a constant incentive for me to get well. I would lie there with my eyes on the prize, visualizing my future self sporting a head full of brand new short spiky bleached white hair, all decked out in my beautiful new red cowboy boots, gleefully dancing my heart out all night long. And oh my lord, that image made me so idiotically happy! I held on to that happy image with a white-knuckled death grip through the very darkest passages of hell.
And my friends, tonight I finally wore my red cowboy boots to a zydeco dance, for the very first time. I decided I needed to get my mind off the worrisome pap test results, and just go out and have myself a ball. It was a big annual dance party, held in an outdoor pavilion out in the country, and just about everybody I knew was there. I had waited so long for this! Every cell in my body was buzzing with happiness as I greeted old friends, hugged, laughed, exchanged news, waved to familiar faces across the dance floor. It felt so goddamn good to see everybody again, I was about to explode. I couldn't wait to dance.
But the oddest thing: nobody asked me. Not one single person. I stood up in the front, in the center, and smiled, and tapped my beautiful new boots. But as every song started, guys I knew would quickly walk right past me like I was invisible on their way to ask somebody else to dance. I kept hoping and smiling and trying to stay happy, but you know, after about 45 minutes I began to wonder what the hell was wrong with me. Did I have a bad case of BO? A giant booger dangling from my nose? A snapshot of Lorena Bobbit taped to my butt? Or was it the stigma of cancer?
Well, of course old stuff started to come up. Standing there like a wallflower triggered all kinds of icky issues. And wouldn't you know, my damn therapist is on vacation. Old hurts bubbled up from the deep reservoir of doom where they lurk, and they seriously began to cloud my vision. All I could think was how ugly I am, a major sexual pariah with cooties. I relived the seventh grade cotillion where nobody ever asked me to dance because I was a homely girl nerd with thick glasses. And the asshole guy I asked to dance at a zydeco club two years ago who sneered, "Why should I dance with you? You won't fuck me." And worst of all, the devastating memory of how the man I had loved was sexually repulsed by me after my cancer. I felt so hideous and untouchable, I wanted to fall through the floor and die.
All these things have really done their damage to me, they've left indelible scars that still open up and bleed sometimes. I'm way too fragile, and I'm learning that I need to protect myself better. After an hour of never dancing, it was all I could do to keep my chin from quivering and my eyes from filling up with tears. I had to leave before I embarrassed myself further by crying in public.
See, this is the thing about cancer: the whole time you're sick, all you think about is how much you want your old life back again. But as time passes, it becomes heartbreakingly clear that you can never ever have that old life back again. You may be alive, but it's dead and gone forever. Too many things have changed, inside and out. You can't go back. You just have to do your best to rebuild a new life from scratch, and try to find new things that might bring you some semblance of joy.
And honestly, I'm trying not to be bitter or angry or vengeful. There's a little wee bit of me that's tempted to go to the next zydeco dance and stand up on a chair and holler, "Hey GUYS! When y'all get YOUR damn cancer and your stupid dicks fall off or whatever, see if I'll give YOU the fucking time of day." But alas, I've taken a solemn oath to never be mean to a cancer person, ever, so I can't.
Anyway. I guess I just need to forget about dancing for now, leave it behind, and try to fill my life with other things, things that won't rub so much salt in my old wounds and make me want to die. Because I really and truly can't afford to feel that way these days. You know?
But damn, it hurts a lot to lose yet another dream. A lot.
Fridays are not just Muscle Day down here in Deep Inferno, they're also Socialization Day. Yes! Friday is the day that Superman goes to the zydeco down at the farmer's market to get socialized, so he won't be a vicious mean killer Doberman. He looks forward to it all week.
Mr. Social Butterfly arrives at the zydeco.
Tonight we ran into lots of old friends, made a few new ones, and passed a real good time. As you can see:
Here he is leaning on Nick.
Chatting with Jerry.
Confiding in Quentin.
Worshipping Marvel.
Making a new friend.
Damn, I didn't get a picture but we met the nicest couple visiting from San Francisco: he's a nurse and she's a chef. We introduced them to lots of interesting folks, knocked them out them with our astonishing real estate prices, assured them that we desperately need nurses and chefs around here, and I think we pretty much convinced them to think seriously about moving on down. Of course when they get home their friends back in San Francisco will think they've gone totally off their rockers, talking about moving to Butt Crack Louisiana. But they're in on the secret now, and this place will magically pull them back. I've seen it happen so many times, and they sure seemed ripe for the pulling. I'd love it if they lived here.
Oh, and here's one more, this one's for Citygrrrl. You missed a good show tonight, grrl! How many more days till you get here??
I've had to slow things down considerably on the muscle building front this week due to back pain that's a result of my severe lumbar scoliosis. I had been doing an upper-lower split along the lines of: upper body, lower body, upper body, rest day; repeat. But now I've switched to a full body workout every other day, three days a week, using only exercises that don't place a load on my spine. It's frustrating and humbling, but necessary: the pain has been getting so grim it's curtailing my QOL in a very ugly way.
So my main exercise now is assisted pullups. This is a great compound exercise that works almost all upper body and core muscles. Four weeks ago I needed a 50 pound assist; now I can do five pullups in a row with only a 10 pound assist. Big w00t! So even though it seems like things are moving at a snail's pace, invisible to the naked eye, progress is actually happening at a pretty respectable rate. If all goes according to plan, two weeks from now I should be able to do five unassisted pullups in a row. And after that, well, the sky's the limit.
My upper body workout now consists of many sets of assisted pullups with various grips; flat bench; assisted dips; assisted one-arm pullups; reverse rows hanging from the Smith Machine; and bodyweight pushups. For now lower body is bodyweight squats, lunges, and step-ups; glute bridges with my feet on a large Swiss ball; and reverse heyperextensions, except on days when those hurt.
In a way the photos I've been posting are deceptive, because what looks like progress is sometimes really more about getting the light right, catching it in a way that's flattering and maximizes definition. I haven't quite figured this out yet, but here are two different shots with light from slightly different angles, in an attempt to be brutally honest. I want to be able to look at these a few months from now and see what I really looked like, not just what I wished I looked like.
I was recently invited to attend a Buddhist meditation weekend workshop called "The Art of Being Human." A well-known instructor from out of state is flying in to teach it, and it's being held in the beautifully elegant, simple, tastefully uncluttered home of a famous local musician. The other attendees will probably all be affluent, well educated, conventionally attractive white people who wear organic cotton clothes and leave their shoes at the door. There will be healthy gourmet vegan meals served with fresh cut flowers on the table, a lovely garden for walking meditation, and a swimming pool to cool down at the end of each day.
Part of me kind of wants to go, because reading Pema Chödrön really helped pull me through some dismally dark times. Another part of me wants to go, for the rare opportunity of being in a room full of people who drive Priuses instead of mammoth SUVs with 'W' stickers on the bumpers. And yet another part of me wants to go because for ONCE I could be pretty fucking certain that nobody will be serving me deep fried pig penises boiled in the same damn vat of rancid trans-fats they've been re-using for the past 20 years.
But these are extremely tiny parts of me, compared to the hugest part of me, the majority part of me, the part that wants to run shrieking out of the room and burst into flames at the mere thought of paying $125 to be cooped up for three days with this kind of pampered white privilege. And it's not even about the money, because they do offer sliding scale scholarships for those who can't pay.
I mean, please: "The Art of Being Human"? Hell. You want to see some true Masters of meditation in action? Go to any of the packed waiting rooms at Our Lady of the Damned. These ugly, drab, grungy, noisy, cluttered, crowded, smelly, uncomfortable rooms are the "workshops" where I learned to sit in perfect stillness for eight hours or more. This is where I learned to transcend my own jumbled thoughts, desires, physical pains, and frantic emotions; to tune out the noisy world blaring its distracting Regis Philbins and Bob Barkers and Judge Judys; to let go of striving for goals, to abandon hope of fruition; to feel at one with my fellow sufferers; to wait in utter stillness, with Cosmic patience, compassion, and a quiet empty mind. This is where I learned to respect not so much the "Art," but the Challenge of Being Human, of Staying Human, under conditions designed to brutally dehumanize.
The sad truth is, I can't do it, I can't accept the invitation. I've just lost the ability, lost the desire to be part of that tasteful, elegant, self-consciously uncluttered world any more. It doesn't feel real to me. It leaves me empty, but with the wrong kind of emptiness.
I do my weekly meditation at the funky rundown neighborhood washateria now, with the other poor people. We sit together in stillness, watching sheets tumble in the dryers, folding towels with empty minds, letting go of attachment to machines that work and won't steal our money. This is what really feels like The Art of Being Human to me now. Aum.
Every Friday afternoon we take a lawn chair and head down to the Deep Inferno farmers market. They have locally grown vegetables for sale of course, and various handmade crafts. There are Creole cooking classes, and a band plays, and people dance under the pavilion. Politicians up for election work the crowd, shaking hands and kissing babies and of course making a huge public display of fussing over big handsome dogs.
We arrive at the zydeco.
Right away, Brad Pitt gets a big kiss from the Queen of Deep Inferno.
Soon the kids come over to say hello.
Everybody wants to pose in a picture with Superman.
He loves to be patted.
He's especially sweet and gentle with the shy kids.
Uh-oh, this finger appears to be heading straight for a nostril!
Superman loves girls.
And girls love him!
They vie jealously for his affection.
Everybody wants to kiss that freaky pink nose.
Don't tell anybody that my big ferocious guard dog is really a pussy cat.
And so yet another exciting Friday Muscle Watch rolls around. Behold the slow but steady return of strength and vitality:
In other news, I had hoped to make it up to Jena for the protest yesterday, but my friends from here who were going wanted to leave at 3 a.m. And with a heavy heart I had to admit that I just don't have the stamina yet for a 15 hour day of Porta-Potties. So instead I wore black (a bold decision for a person who lives with three white dogs, believe me) and followed the event on various feminist blogs and forums.
As it happened, I had a routine appointment at the oncology clinic yesterday. (This was the one where I was supposed to get the results of my August 27 CT scans--can you even imagine what a nutjob I would be by now?). When I was checking in, I noticed that all the nurses and receptionists at the onc clinic were wearing black scrubs. Even the white ones!
Three years later when I was finally called in for my pre-appointment vitals, I mentioned to the nurse taking my bp how wonderfully supportive it was that they were all wearing black in honor of Jena today. "We always wear black scrubs here in the medicine department," she said. "That's our color."
Hunh??? Surely I would have noticed at some point over the past year that the oncology nurses were all dressed in black? But they weren't, because I would have noticed such a morbid detail, especially back when I was sure I was dying. The only thing I can figure is that now I go on Thursdays instead of Tuesdays: Tuesday onc clinic is for patients with active disease, and Thursdays are for those of us who have No Active Disease, fondly referred to by staff as the NADs. (Go, NADs!) And maybe only the Thursday nurses wear black. Who knows.
Anyway, the nurse kindly pointed out that those who were supporting the Jena 6 were wearing hard to spot black ribbons pinned against against their black scrubs. So I sought those out and voiced my support.
Finally, about eleven years later, a young resident appeared, and this time I really hit the jackpot. A brand new crop has rotated in which could be bad news, as they're likely to be terribly young and nervous and inexperienced and not quite fluent in English yet. But this guy was wonderful. He came into the exam room empty handed, not burdened or distracted by my 50 pound chart, and he sat down in a chair facing me with nothing between us. He was relaxed and friendly and he actually LISTENED. He took the business of my paralyzed thumb seriously for a change. Instead of just blowing it off with some sham diagnosis, he ordered an x-ray and gave me a referral to the orthopedic clinic.
The last young resident who looked at it dismissed the swollen nodule as a lipoma, which I know damn well it isn't. (At least she ordered some blood work to check my cholesterol, which as usual came back as low as a healthy ten year old's.) But this guy had a guess that makes sense: he thinks it's almost certainly a wicked case of trigger finger, which I'd never even heard of. The description fits perfectly. He thinks it might have been caused by chemo-induced damage to the synovial sheath, the membrane lining the bone cavity that the tendon moves through. This makes much more sense to me, and is a huge relief after all these sleepless months of being thoroughly convinced that my right hand is about to be amputated.
So I'm healthy and relieved and feeling pretty darn good, and the dogs and I have a delicious weekend planned. I hope y'all do too! Since Superman's been hogging so much bandwidth lately, I'll close today with a few select shots of the ever beautiful if excessively bossy Dixie Rae.
Tonight, Superman graduated from his obedience school egregia cum laude. I invite you all to please stand and join us in a rousing moment of song:
Gaudeamus igitur Juvenes dum sumus Post jucundum juventutem Post molestam senectutem Nos habebit humus.
(Let us rejoice therefore While we are young. After a pleasant youth After a troublesome old age The earth will have us.)
Pereat tristitia, Pereant osores. Pereat diabolus, Quivis antiburschius Atque irrisores.
(Let sadness perish! Let haters perish! Let the devil perish! Let whoever is against our school Who laughs at it, perish!)
(Ahem. I certainly hope nobody here is laughing, especially not at that ridiculous mortarboard. Or you shall all perish in Latin.)
Anyway. On Wednsday night my brilliant Superman will begin graduate studies, pursuing his doctoral degree in clicker trick training. Stay tuned.
I study nuclear science I love my classes I got a crazy teacher, he wears dark glasses Things are going great, and they're only getting better I'm doing all right, getting good grades The future's so bright, I gotta wear shades
After spending this past week fending off floods and hurricanes and mosquitos and enormous black clouds of lovebugs so thick the street lights came on in the daytime, it was a relief to finally have a beautiful, clear, sunny, not-too-hot day to spend out tootling around on the water. Ah yes, now I remember why I love Louisiana so much!
Cypress trees in the Basin
A beaver lodge
An egret
An alligator checks out the boat: this guy was about 13 feet long, which means he's probably about 70 years old.
If I had a fancier telescopic lens, you could you see that's a bald eagle sitting in the top of that tree.
Norris telling very bad Boudreaux and Thibodeaux jokes.
Jesus Christ on a tree!
A painting of The Last Supper, hanging way the hell out in the middle of the swamp. We don't need no steenkin' museums down here.
The Henderson Queen looks like a very very very old rustic Cajun houseboat, but was actually built in the 1980s for a movie set.
Late afternoon sun sparkling on the water. How much better can life possibly get!
Slowly buy surely my strength is starting to return. Maybe you can't see it so much, but I sure can feel it. Even two months ago, little ordinary daily tasks like lugging six loads of laundry over to the washateria would wear me out, strain my joints, hurt my back, leave me exhausted for the rest of the day. Now I'm all, Ughn! Outta my way, dickblisters, I got me some fuckin LAUNDRY to do!
And at the gym, it's extremely satisfying to watch my numbers climb, as I increase my loads pound by pound, day by day. It's true what they say about the phenomenon known as "muscle memory": lost muscles really do come back a lot faster the second time around.
What a relief it is to finally be rebuilding, my body AND my life.
Drawing and knitting have been bringing me a lot of peace and joy these days. I'm not interested in creating masterpieces, it's more about the process than the product for me. I love the way I can drift off into a soothing, centered, serene zone while I work. My brain empties itself of worries and fears, and soon involuntary fragments of familiar well-loved poetry float in to fill the emptiness.
I watch with a kind of detached fascination as a face magically appears on my blank drawing pad, or a long festive scarf emerges from my softly clacking needles. It doesn't even seem to be me who's producing these things, they seem to somehow be making themselves, not of my volition.
And yet I can see myself right there in the creations. I see such complex emotions in the faces, and I recognize the very things I've never been able to express with words. I see my own crazy foolhardy defiance in the scarves: Yes, they say, I know the brutally cold winter is on the way, and icy bitter winds will soon be battering my tiny uninsulated, unheated shack. But look! Here I am, facing it bravely armed with long festive colorful scarves! and lots of festive fringe! And perhaps a festive dose of denial.
A single woman in my fifties, in debt, no income, no health insurance, and then that grapefruit-sized tumor wedged between my lungs turns out to be a malignant high-grade highly aggressive stage IV lymphoma. How much worse can it get? Bwahahaha! Stay tuned and find out.
