Lies, damned lies, and...

My sister likes to remind me that prognosis is not destiny.

I took a lot of statistics: For a full year in high school, and then twice more in college. And all the while bitching about "Myaaaaah, when am I ever going to use this? A computer can do this!"

Statistics seem much more relevant when they apply toward your own chance of mortality.

At the time of my diagnosis, which was stage iib osteosarcoma, my chances of five-year survival were roughly 65-70%, assuming that I could tolerate the chemotherapy.
When it turned out that the methotrexate/cisplatin/doxorubicin combination was ineffective, my chances fell to about 50%.
When we learned about the metastasis, which makes it stage iv osteosarcoma, my chances fell to about 30%.
And then, the brain metastasis. One person has ever survived 5 years with a brain met. Not 1% of everybody -- one person, ever, since they started keeping statistics about cancer survival. She's alive today, in Florida.

And yet, I'm still the same incidence I was at the start. I'm still the same person. (Sort of. I'm nicer now, but also more self-obsessed.) Lachesis allots the same amount of silver thread. The statistics change, but my life remains the same: Mine.

But I'm famous in the worst possible way now: I'm a board question for oncology, and there are two pending journal articles about me in the Journal of Clinical Oncology (or so I've heard). This is even worse than being on a reality show!

Sensitivity fail.

Here is a conversation I had with Lee, a woman in my Introduction to Library Science class, after she noticed I'm not awesome at walking down stairs.

Q: What's wrong with your leg?
A: Oh, I have some trouble walking down stairs.
Q: Why?
A: I had some surgery.
Q: What kind of surgery?
A: Uh...I had some bones removed.
Q: Like Harry Potter? I think Professor Lockheart did the same thing.
A: Yeah, I had the same thing: Quidditch accident.
Q: Hahaha, but no, really: What's wrong with your leg?
A: Uh...Actually, I had osteogenic sarcoma in my leg.
Q: Osteo...?
A: It's a kind of bone cancer.
Q: Oh.
A: Which also explains my terrible haircut.
Q: I always said, if I had cancer, I would get flowers painted on my head. You know, like henna tattoos and stuff.
A (not really): Actually, your scalp is so intensely painful that the best you can even *hope* for is wearing a wig; in actual practice, you would probably go bald because of sheer agony.
A (really): That would be cool.
Q: I know, right?!
Other group members: Awkward silence.
A: So...governmental libraries?

My Cancer is Better than Your Cancer

I’m broke, now and forever: As soon as I start making more than $900/month, I get kicked off of Medicaid. But I can work again! And I’ve started school! Those things are much better than being dead.

So I’ve been looking for scholarships for cancer survivors. There are a surprising amount, actually; most were set up by the loved ones of some sweet child who died.

By age, education, and diagnosis, I qualify for a lot of those scholarships: You must be under the age of 26 or 28 or 30, enrolled in an undergraduate or graduate program, and diagnosed with a potentially fatal form of cancer. Bonus points for exceptionally traumatic diagnosis stories (Foreign doctors! Fired! Threatened with deportation!) and horrible cancer experiences (Coma! Stage IV! Family suicide!).

But I don’t qualify, because my cancer was diagnosed after I turned 18. Never mind that I probably quietly had the disease, undiagnosed and spewing its malicious seed, since my last growth spurt at around fourteen: In the world of cancer, diagnosis is everything.

(Not to mention those pissy little fiefdoms, patients and survivors especially of breast cancer and testicular cancer, that think their diseases make a special club that only they get to be in. The Susan G. Komen Foundation actually sues other types of cancer charities for using the phrase “For the Cure.” You jags, your cancer doesn’t eat you any faster than my cancer eats me; it’s not magical just because your DNA splintered instead of mine.)

(Or maybe I just think that because the sarcoma clubs suck.)

Anyway, I’m frustrated because there are no resources for cancer of the Adult Youngs. If you’re under 18 and you get sick, that’s fucking horrible, but there are support groups for you and your parents, and Disney will fly you out, and Make a Wish will get Justin Bieber’s hair to visit you. If you’re an Old and you get cancer, you’ve got a mountain of Social Security and Medicare to land on, not to mention that you probably have people in your social circle who are familiar with your experiences and can help you.

Adult Youngs don’t have either benefit. The only book anybody had to offer was about some asshole in her 40s who thought she was too young and cute to have cancer, and that shopping at Whole Foods and doing yoga cured her. The only things that shit cures is a vitamin yuppie deficiency.

Kicking my hillbilly heroin habit

It's pretty much like Trainspotting.

I've been taking various combinations of OxyContin, oxycodone, and morphine sulphate since last June, with an occasional injection of actual morphine (ha ha ha!) when I was getting dialysis and wasn't allowed to get out of bed.

Morphine injections are insane, by the way, especially when they're pushed directly into your aorta. (Jealous of my port, heroin addicts?) It's like going from normal to spins-drunk in about four seconds, only every time you close your eyes, you see spectacular and sometimes terrifying hallucinations. Once, after my coma, I was reading a novel about Mardi Gras when the nurse gave me a morphine shot. I fell asleep and dreamed that I was being pursued by a murderous peacock-plumed eagle, with green and purple feathers and gilded beak and talons, through a miles-long cavern filled with glorious pirate treasures. (See also Coleridge's Kubla Kahn
.)

Anyway, I'm tired of the drugs, because they make me kind of sleepy and stupid, even when I'm taking a maintenance dose. On the other hand, they do keep my leg from hurting all the time, and they protect my friends and loved ones from the horrible crankiness that results.

So I stopped taking them when I got back from Thailand/Cambodia, which seemed like a good idea at the time, but it threw my already jet lagged body into more chaos. I wake up at four AM ravenous and full of energy, but by noon I'm exhausted and have a stomach ache. Plus I shiver all the time for no real reason. I'd go back to the pills, but I guess I'd have to start the detox process all over again at some point.

How much pain is a person supposed to grit their teeth for, anyway? Back when I was in chemotherapy, doctors would write me opiate prescriptions like they were salesmen for an Afghan poppy plantation. Now they give me a suspicious stink-eye when I ask if I should still be taking them. But I'd be happy to follow the rules if somebody would just tell me what they are!

War Games

Lot of cancer patients – sorry, “cancer survivors” – and patient advocates complain about the war metaphors used to describe the medical experience of cancer. Which I sort of agree with. Unlike, say, measles or HIV, there is no invading Other that your body treats as a hostile force. Cancer is simply oneself, through a glass darkly. It is difficult to destroy because treatments cannot differentiate between cancer cells and normal cells; it is difficult to eradicate because the immune system recognizes and protects it.

But the war language persists. The Susan G. Komen Foundation is “leading the fight” against breast cancer. So-and-so “lost their brave battle” with cancer. (The clichés associated with this disease are kind of the worst part. I am going to murder the next person who says “It is what it is,” tells me to live “one day at a time,” or describes a cancer diagnosis as coming “out of the blue.” [For the record, the best parts of cancer are $5 massages, and hanging out with nurses.])

I think of cancer as being more akin to guerilla revolution than an actual war. Bear with me for a minute on this one. Biologists believe that multicellular organisms arose as something like a collaborative process: Slightly different organisms formed symbiotic relationships that became permanent as individual cells specialized further. For an example, take lichen: There’s a plant component (algae) that photosynthesizes, and a fungus component that provides stability and shelter. Over billions of years, the cells formed chains, and then the chains became rafts, and the rafts formed digestive systems and rigid structures and, eventually, spinal columns and immensely complex brains.

Anthropomorphizing single-celled organisms in the primordial soup is ridiculous. But isn’t it tempting to think of that early evolution as the first formation of a republic? And now, we, the descendants of those primitive joinings, are republics of a few trillion members, carefully regulated by DNA, policed by amino acids, and governed by consciousness (or the soul, or the mind, or whatever).

And cancer is what happens when a single cell rejects the tyranny of life encoded in the DNA, rejects the amino acid commands for apoptosis, pursues its own life and reproduction to the detriment of all the other cells. A cancer death is a successful revolution.

I’m overthinking this. Whenever I start to expound on this theory, J---- from my support group finds a way to subtlely call me an asshole. If even the other cancer patients think I’m full of shit, I must be full of shit.

Tomorrow would be the first day of the sixth cycle of docetaxel and Gemzar, except that I only had five cycles. So, chemo’s over! A couple of people have told me that it’ll be six months before I feel like I did before I started. It might be longer for me, even, because I had more cycles than usual.

I get new scans next week, and see Dr. C-----. I’m sure everything’s fine, but sometimes when I take a deep breath I get this strange tickling ache. One gets you ten it’s just allergies, or a reaction to the dry air here, but of course I’m imagining metastasis. I’ll probably spend the next four and a half years imagining metastasis every time I get a headache or a sprained ankle; stupid five year waiting period.

Fuck you, the sky. Fuck you, trees. Fuck you, dog, for being so happy to lick crumbs off the unvarnished kitchen floor even though you're probably getting splinters in your happy fucking dog tongue.

Fuck anybody who hasn't spent the week indoors, loathing birds and resigning jobs and cursing baseball season and vomiting, vomiting, vomiting.

Tears in Heaven

When you tell them that you have a potentially fatal illness, most religious people will say something like, "I'll pray for your health," or "God bless you," or things in that line. A few will say, "I'll pray for everything to work out as it should," which infuriates me.

Because it doesn't mean that they hope I'll get better, it means I hope you convert to [narrow-minded, premillenialist Protestant sect] before you die, and that you die soon, before you commit [victimless sin I've probably already committed]. It's not an ill wish, but it is a reflection of their repellent, destructive theology, where life in Heaven is so much better than life on Earth that actually living is an unhappy obstacle to be removed, hopefully as soon as possible.

They'll say, "I'll pray for everything to work out," and I'll chirrup, "Thank you so much for thinking of me!" while thinking Fuck you and your consolation prize Heaven. I want to grab them by the shirt front and shout at them, like Mersault to the priest in his prison cell: Don't you know how beautiful life is? Don't you understand that, at it's best, Heaven is just a chance to live again? Or that even a moment of life in wracking pain from my deformity and sickened by chemotherapy is preferable to a thousand years of that imaginary honeyed perfection? Like the masses who couldn't understand Nietzsche's Zarathustra, their other-worldly obsession prevents them from seeing that the this-worldly is infinitely more deserving of their attention.

Heaven is a reward only in the minds of the healthy, like a person persuading herself to get out of bed by remembering that the comfort will still be there this evening. When night falls, she pushes herself to stay awake just a little longer, to finish her program or novel or conversation. The dying person uses any means available to them to push Heaven away for an hour, a day. Heaven is the cheese in the mousetrap: Put your foot on the pressure plate, little mousey.