I promised to drop by from time to time, and let my DailyKos family know what's been happening since I first wrote a diary on the discovery that I have small cell lung cancer. I am far from being a helpless victim of this disease. In fact, I've developed a wonderful plan, and I'm here to tell you the good news: my plan is working. Let me explain:
A couple of weeks ago, I send this missive around to family and friends who are faithfully keeping vigil with me on my cancer watch: "I'm planning to stay at La Quinta at least until Friday," I tell them, knowing the powerful nausea that awaits me, "so I can have someplace cool and solitary to crawl back to after my chemo on Tues, Wed, and Thurs. I'm planning on holing up with a leakproof wastebasket, a huge bottle of mouthwash, and a thesaurus of really foul swearwords." But I refuse to let anything get me down, so I conceive a plan. "On the bright side, though," I tell them ... (Make the jump)
...On the bright side,
- I'm starting out fat, so when I lose lots of weight, I'll end up looking normal.
- When my hair falls out, I'll buy a wig that has no grey hairs in it, thereby making me look 20 years younger.
- When my OTHER hair falls out, I'll save a ton of money by not having to pay for a "Brazilian."
- With my new weight loss, wig, and clean bikini line, I'll look fabulous at the beach this summer.
- With my provocative new "Brazilian," I'll be able to attract lots of older, wealthy men.
For any three out of five of these results, I'd gladly barf for a week. No worries, mates, I tell them.
Well A- HAH!, I 'm here to tell you. My plan is working. Yesterday, I go in to have blood drawn and find that I have lost six pounds in the past week alone. This is by far the most effective diet I've ever been on. None of the loss is water weight, either, I'm proud to say; I've been pumped so full of saline solutions that, unable to pee it all out quickly enough, my head swells up like a Macy's Day Parade balloon, and they have to cancel the day's chemo as a result. No, no: this is pure, 100% guaranteed avoirdupois that I'm losing at three times the normal rate.
Yup, I am right on schedule. A few days ago, I wash my hair and braid it into two tight braids against my head. Keeping my hair in braids saves me the bother of having to dress it every day, which lately I'm too tired in the morning to do. But today, I sit with my coffee at a table on a shady porch, out of the brilliant sun, and I let it all out and begin to brush it. Like a waterfall, my hair cascades from my head into the brush, into my lap, onto the porch where it rolls in today's stiff breeze. May I mix metaphors? My hair rolls along the porch like glossy black tumbleweed in an ethnically diverse cowboy movie.
Moments ago, the newsboy delivers the weekend edition of the Financial Times. I take the plastic orange in-case-it-rains bag off of the paper, and begin to fill it with my hair. I stuff my hair into the bag loosely at first, and then punch it down tightly as it becomes obvious that I'll need all the room in the bag I can get. Next, the Brazillian, I suppose. I'm not sure I'll know when that time comes; what with the pouch of fat I've developed around my middle-aged middle, I can't quite see the kitty cat anymore. I am laughing, but the laughter is a bit different now than it was just a week or two ago. And anyway, it ain't all laughter and forgetting: as soon as the bag is full, I call one of my sisters and tell her about my hair, and then I just cry and cry into the phone as she says softly, over and over, "I'm so sorry... I'm so sorry... I'm so sorry..." I instinctively avoid the mirror, but catch a glimpse of myself in a hallway. What's left of my hair is a thin cap, bald spots showing through. For the first time, I truly understand the lure of the combover.
****
The most important mission of the past couple of weeks has been to get a good fix on whether I am in Stage 1 or Stage 2 of this disease; if I am in Stage 2, then it means the cancer has spread somewhere. If this is the case, I'll be treated with chemo and not, frankly, given much chance at more than a year's survival. But if I am in Stage 1, then it means the cancer is still limited to my right lung. In this case, everyone is given permission to be hopeful (if not quite optimistic); I'll be treated with chemo and radiation, and I might just be in that 1% of small cell people who survive for 5 years.
Small cell lung cancer likes to migrate to the brain, so most important of all, I'm given a brain MRI to see whether the cancer has metatasticized there. It hasn't. I'm also given a whole-body PET scan, to see if it has metasticized anywhere else. The PET scan lights up my uterus. In fact, my uterus lights up so strongly that both my medical oncologist and the new teaching Fellow who is following my case tell me they've never seen the like, and that they'll be submitting the pictures to a medical journal. Later, after the drama is all over, I sit at lunch with a friend of 30 years, and tell her about the medical journal plan. "Oh, good!," she says brightly. "Your 15 minutes of fame. Just in time!" Ba-dump-bump! We laugh hard.
I finish my first round of chemo on a Thursday, and have the MRI and PET on the next Friday afternoon. Friday evening, they call to tell me that in four days, I'll have a total hysterectomy. I've just had chemo, though, so I have to have that new drug, Neulasta, that builds up your white blood cells in an unnatural hurry. Your white cells are produced in your bones, and the turbocharging that Neulasta gives, makes your bones hurt terribly.
For as long as I can remember, I react to most pains by laughing because all but the worst, sharpest pain has a kind of ticklish edge to it, and I laugh at the ticklish edge. The ticklish pain of flu, for instance, or the ticklish discomfort of feverish chills makes me laugh. The Neulasta makes me laugh as I lie groaing in bed; every long bone in my body aches like a bad flu, and my hip joints are just impossible. I must be pumping out white blood cells like crazy.
But this is as nothing to the terrible tickle of the hizzy, as I immediately begin calling it. The hizzy's been done laparoscopically, so it's a lot less traumatizing than a true cut-up surgery would have been. Nevertheless, I feel like I'm in one of those exhibition boxing matches, where the kangaroo has decided he'll knock me out by repeated blows to my stomach. He's got boxing gloves on his feet, too. Oh, fer chrissakes ...I'm laid up laughing at a kangeroo, and I've got to be up in three days for more tests.
While I'm laid up laughing, the nursing staff tells me that I bottomed out during the hizzy. Apparently, if you've got serious breathing problems then anaesthesia can be a bit dicey. During the hizzy, my blood pressure plummets and I go into critical condition as I lose the ability to breathe on my own. I wake up in the surgical ICU where they keep me until my blood pressure and breathing normalize. During the drama, of course, I am totally sedated and unaware of any of this, so I cannot be afraid of anything.
A few days later, I am with a couple of people -- that 30 years' friend I spoke of earlier, joined by her brother, a friend for nearly as long. We are sitting over an involved and interesting story the brother is telling. I am trying to control the persistent tickle in my lungs. I am trying not to interrupt him. I am trying to be as unobtrusive as possible. I like the story he's telling, and I want to hear every bit of it, but the little tugs and pulls of my lungs keep coming, keep erupting, and I can't control my coughing. The brother reaches a particularly interesting point and then stops his storytelling for a moment. Without missing a beat, he turns to me and advises -- all mock concern -- "You gotta do something about that cough!" The laughter that follows is hearty, but -- at least on my part -- tinged also with something I can't quite name, something ineffably sad.
There is good news. My hair and my body are not all that are shrinking. Yesterday, the oncologist tells me that just from the first round of chemo, my cancer is shrinking, too.
****
Just a note on the indignities of health care: In the whole blur of consultations and tests and procedures, the one constant is my having to take off my clothes and put on one of those miniscule, useless, foulard-patterned hospital gowns. Last Friday, I see a radiation oncologist who -- among other things -- gives me tiny tattooes that will help in the precise telemetry of the machinethat delivers radiation. The problem is, the tattooes are so... tiny. Between the tiny tattooes and yet another tiny gown, I vent the following lament ...
Just a note: for my riff on the word "Indignity," placing the accent the third syllable yields the proper rhyme and meter.
*******************
The Hospital Gown Lament
sung (roughly) to the tune of Lydia, the Tattooed Lady
Lydia, oh Lydia, say have you met Lydia,
Lydia, the Tattooed Lady.
She has eyes that folks adore so,
And a torso even more so.
Oh Lydia the Queen of Tattoo.
On her back is the Battle of Waterloo.
Beside it the wreck of the Hesperus, too.
And proudly above waves the Red, White, and Blue,
You can learn a lot from Lydia.
(from the original lyrics)
Lydia oh Lydia, the gross indignitia
Of nudity spread flat and sprawling
For a robe that fits --
I'd give two bits and a bit more, a lot more besides --
For a hospital gown that hid my hide.
I'd feel a lot less like a carnival ride
If I had tattooes like Lydia!
Lydia, oh Lydia, the base indignitia
Of pokes and proddings and probes.
The least they could do is give me a robe
One that doesn?t rise
quite so far up my thighs--
Oh, I wish I had tattooes like Lydia!
Lydia, oh Lydia, the rank indignitia
A short-haired Godiva endures!
The robes I wear yawn
Like the Red Sea at dawn
As Pharoah pursues the poor, hard-working Jews.
But while Moses had 'em herded,
At least their loins were girded!
I wish I had tattooes like Lydia.
Lydia, oh Lydia, the mean indignitia
Of baring your buttocks to strangers.
If only I were covered in ink,
Riotous colors and dizzying swirls
I'd be less ashamed when the technicians came
And got a glimpse of my two little girls!
Oh, I wish I were covered like Lydia.
Yes, I wish I had tattooes like Lydia!