Part II, Chapter 4: Burn, Baby, Burn!
Sent: August 8, 2005
Subj: Adventures in Neutropenia
It seems like ages since the last update, and what a time it has been! A week-and-a-half ago, I took a five-day insurance-paid vacation at Ben and Jerry's Hospital with a neutropenic fever and surgical wound infections in my face and my leg. (Among other joys, chemotherapy temporarily kills off one's neutrophils--a key element of the immune system for the non-medical types out there--causing neutropenia, during which one is highly vulnerable to infection. A fever during neutropenia is an automatic ticket to the hospital.) In the Emergency Room, I was taken care of by fellow NYU grad and friend, Kama, and later, I was visited by former Hippie General intern, Juan [the nurses’ heart-throb], who is in his radiology residency at Ben and Jerry's. I'm on Cape Cod now, enjoying self-administered IV antibiotics. In fact, I'm hooked up at this very moment. (Is that weird, or what?)
I will start proton beam therapy in a couple of weeks. Proton beam is a highly focused form of radiation that will, I hope, zap any tumor that is left after the surgery without frying the important stuff around it like, say, my brain. Sounds very Star Trek. There are only four facilities that do this in the country. One is at Man's Best Hospital. (Eat your heart out, Yankees fans New York City hasn't got one!) I was fitted for a mask that will keep my head absolutely still during the sessions. See? Cancer ain't so bad. At least you get a mask.
By the way, during the long period between surgery and the subsequent chemo, I grew back some respectable head hair and a full beard. But the stuff that grows fastest is the nose hair and those weird ear hairs that guys get sometime in their thirties. Everything is falling out again now, but they also seem to be the last to go. Bummer.
Hasta la sarcoma,
Note: I seem to be missing the e-mail referred to in the following e-mail. If someone has a copy, please forward it to me.
Sent: August 28, 2005
Subj: Quick Update RE: The Waiting Game
First of all, readers have pointed out a couple of spelling errors in my previous e-mail (should be peek, not peak, tweak, not tweek). I haven't figured out yet whether to blame local or federal authorities for this, but Brownie, you're doing a heckuva job.
I have news. Dr. Xena called today. She referred to proton beam treatments starting on this coming Monday. Apparently, they called her, but neglected to call me. So I called the radiation oncology people. Treatments will indeed start Monday. They just don't know what time. I do hope that they'll figure this out and tell me before it happens so I can show up and stick my head in the machine before they press the button. Stay tuned, volunteer drivers.
Sent: October 15, 2005
Subj: Proton Torpedo
Well, things have settled down to a routine. On Monday mornings, I get a homeopathic dose of chemotherapy (Not really homeopathic. Just a small dose.) at Wicked Famous Cancer Hospital. I get proton beam radiation five days a week downtown.
The proton beam is so complex that each day's radiation dose requires a different, specially manufactured filter that must be designed by a mad scientist who cackles maniacally. The experience for me is like getting a regular x-ray except that I am strapped down with a specially fitted mask to keep me from moving my head. ("Quid pro quo, Clarice. Quid pro quo.")* The treatment itself is painless, but over time, it causes something like a sunburn--the sort of sunburn you get if you sunbathe all day with your mouth wide open and your tongue sticking out (Ouch!).
Still, this is a pretty mellow interval compared to the last few months, and I have been spending a lot of time with LLC. I have 15 more weeks of full dose chemotherapy after I finish this stage in November, and then--freedom. Or another tumor. You never know these days. Now off to dinner. Oddly, I crave fava beans and liver with a fine chianti. Mmm.*
Many thanks to my volunteer chauffeurs!
*If you don't get these references, Google the first one.
Sent: October 29, 2005
Subj: Inhuman Resources—The Grinch comes early and with apparent brain damage.
The low dose of chemo I'm currently on is letting my hair grow. So I figured I woud grow back my mustache and goatee. Then, a couple of days ago, the radiation field included my right upper lip, and that side of my mustache promptly dropped out. I briefly considered pioneering a new look or just keeping the goatee. (David Letterman calls that style the 'Amish outlaw' or 'gopher butt.') Ah,well. I chose the easy way out and shaved it all. Now for our feature presentation.
* * *
On October 19, I got a call from Ben and Jerry's Hospital asking if I had a new health insurance number; the old one didn't work. So I called Pushme/Pullyou Insurance who told me my employer's Inhuman Resources Department had cancelled the whole family's coverage on October 14 retroactive to August 1. Interesting news, especially for a cancer patient.
After numerous outraged phone calls from K and from Sandy my union rep, Inhuman Resources apparently checked their messages and called back. They swore they had notified us by mail on September 16 of our opportunity to take over payments through COBRA (a mere $1,300 a month), and sent us a letter on October 14 notifying us we were cut off.* (Huh? Me not get no letters. Really. Me checked.) To reactivate our insurance retroactively, we would have to pay them $2,600 immediately and another $2,600 PDQ, and, by the way, to paraphrase--this is your (K's and my) fault, not ours.
So, like the two lawyers we are, K and I went straight to the contract and. . . No we didn't. We panicked. After much weeping, wailing, and gnashing of teeth, with much help from Sandy, we established that all we were supposed to pay was the $191/month copay we had been paying since I started working there, and that we don't have to COBRA (pay $1,300/month) until the end of January--just as my stalwart Residency Director helpfully told us months ago. Oh, we of little faith! So Inhuman Resources told us they had already reinstated our insurance, (Apologizing profusely? No. At all? No.**). And everyone lived happily ever after. No.
Last night, K went to pick up my prescription at the drug store and discovered--surprise, surprise--that Pushme/Pullyou Insurance thinks our coverage is still inactive. K came home with steam rushing from her ears and sent an angry e-mail to Inhuman Resources. Personally, I would like to get ahold of whatever they're smoking.
* Lo and behold, two days after our first conversation, a letter dated October 14 arrived--with a whole new story which they later disavowed--with no mention of a cutoff. It was postmarked October 20--the day after we first called. Funny, that.
** OK, they apologized today and allegedly fixed it. But we're not holding our breath.
All comments, suggestions, compliments, insults, and hate-mail should be directed to Tom@tumoriffic.org.