Editor’s note: Elizabeth Churchill began writing her blog in 2006 after a grapefruit-sized tumor wedged between her lungs was diagnosed as a malignant highly aggressive stage IV lymphoma. Before her cancer diagnosis, she was the author of a horticultural column, an avid weightlifter, and a homeowner with a beautiful garden north-east of New Orleans. Once she started treatment, she couldn’t work, her relationship with her fiancé ended, and she became so in debt she had to sell her home to pay the bills. Unemployed and with no health insurance, Churchill started writing to keep family and friends informed and herself sane. Here, we excerpt a few of her entries.
So I had an oncology clinic appointment this morning, and I was all geared up to challenge the head oncologist at Our Lady of the Damned. I had done my research and I was prepared to go to the mat if I had to. My plan was to demand that I stop chemo and have a PET scan after six treatments instead of completing all eight that he had recommended. I was all set to earn my wings as an Advanced Assertive Cancer Patient. I was going to pin the dude to the frickin’ wall.
Here’s the letter I had written outlining my position:
I would like to stop R-CHOP after the sixth treatment on January 25th.
I have not been able to find any evidence in the medical literature to indicate that the benefit of extending treatment to eight sessions outweighs the considerable risks. There are indications that any malignant cells surviving six sessions of R-CHOP are most likely refractory so that extending more of the same treatment for six additional weeks would be a dangerous waste of time.
I would like to schedule a PET scan as soon as possible after the sixth treatment. If the scan looks good, then I will proceed with maintenance Rituxan; if not, other options must be considered, including wait and watch, radiation, autologous stem cell transplant, etc.
Thanks very much.
I was expecting some resistance from The Man. By the time they called my name over the PA, I was raring to fight. My jaw was locked in a fierce bulldog underbite and my eyes were bulging. I had steam pouring out of my ears. Snorting and pawing the dirt like El Toro, I all but had a bright red Question Authority bumper sticker plastered across my forehead.
Unfortunately, I was scheduled to see my favorite resident, the one who actually treats me like a human being, who pays attention, and listens to what I say. This is a nice young man and I sincerely hoped he wouldn’t be injured in the crossfire. After he’d inquired politely about my knitting and my bench press numbers, I hissed and fluttered my letter in his face. He looked it over. “No problem,” he said. “I’ll just go run this by Dr. Onc.”
A few minutes later the oncologist himself came into the exam room and introduced himself to me. What an honor, after six months I finally get to meet my own doctor! We shook hands, then I rolled up my sleeves, flexed my biceps, and sneered menacingly. I drew a line in the sand and started to speak.
“There is no evidence…” I began.
“Eight sessions are not more efficacious than six,” he interrupted.
“No,” I snarled, baring my teeth. “They’re not.” I blinked. The ear steam was beginning to blister my eyelids.
“Indeed they’re not,” he concurred. “I have no idea why you were originally scheduled for eight. You’re one sharp cookie to catch that.”
Excuse me? One sharp what?? Um. Oh. Yeah. Okay!
The friendly resident smiled and nodded.
So this wasn’t exactly going as I’d planned. What the hell was I supposed to do with all that rabid foam that had accumulated in the corners of my mouth? I glanced around surreptitiously for a paper towel dispenser.
“I take it you have a computer,” Dr. Onc continued with a sigh of resignation. (You’ve got to hand it to him — he’s one sharp cookie himself to deduce that my letter hadn’t been written by hand.) “We like it when our patients are smarter than we are.”
Then he narrowed his eyes shrewdly and tossed his gauntlet into the mud at my feet. Ah, this was more like it. I arched one eyebrow and waited expectantly.
He issued the ultimate challenge: “Are you CD-20 positive?” he demanded.
I suppose he hoped I’d crumble, that I’d succumb to confusion or stutter and ask what the hell he was talking about, or maybe even start babbling incoherently about my CD collection at home. But I didn’t miss a beat. “Yes,” I said. “I am.” Hey, I didn’t spend $150 buying copies of my own medical records for nothing; I know what kind of genetic profile I have. He flashed me a sportsmanlike smile of defeat. “Yes, you are,” he conceded. “So we’ll schedule a scan after the next treatment, then for two years you’ll do maintenance Rituxan and we’ll restage and scan you every six months. After two years with no evidence of disease we’ll declare you cured. Any questions?”
I let out a whoop and flung my arms around his neck with what may have been excessive zeal. The poor man staggered backward, muttering “Nnnghhhnhzh!” and fled the scene. Victory was mine.
Do y’all understand what this means? Nine days from now I will be FINISHED with chemotherapy. Nine more days! Finished!
Halle-frickin’-lujah. Let the countdown begin.