Liz's Blog: As the Tumor Turns, Part 06
How To Be A Support Ho
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 they have these free, drop-in, cancer support group meetings at my hospital. The social services department holds them in a conference room on Tuesday mornings during oncology clinic hours. Tuesday mornings are the only time they have an oncology clinic, so the odds are pretty good a sizable number of cancer patients will be there anyway, waiting for their appointments. And since there's usually about a four-hour wait to see one of the residents at the oncology clinic, there should be plenty of time to drop in on the cancer support group.
But I noticed that whenever they announced the support group over the PA, none of the cancer patients jumped up to attend. I wondered why.
Now for some reason the oncology clinic shares a waiting room with the medicine clinic. I mean, why not with the orthopedic clinic, or obstetrics, or ophthalmology? The medicine clinic is where sick people go when they're being treated for the flu. Or bronchitis. Or strep throat. So most of the medicine clinic patients are infectiously coughing and honking and sneezing, and most of the cancer patients have compromised immune systems. And yet we're forced to sit together quite intimately in this huge, funky, crowded waiting room for four excruciatingly long hours. You would think this setup would be an excellent incentive to drive the cancer patients out of the waiting room and into the conference room, wouldn't you?
Well it's sure as hell what pushed me over the edge. One Tuesday morning early on in my treatment, my designated driver had gone to eat breakfast at the gas station across the street (don't ask), and a woman with a hacking cough sat down beside me. Not ten seconds later I found myself pulling up a chair around the table in Conference Room 1, where I joined two supportive social workers and three decidedly non-huggy-huggy, touchy-feely fellow supportees. Nobody was coughing, so I decided to stay.
Apparently, everyone was going around the table introducing themselves when I arrived. Supportee #1 was an aggressive, beefy, red-faced man in his early fifties with a head full of thick gray hair that was obviously, in several of its rather unfortunate dermatologic details, not a wig. He was hooked up to a large rolling oxygen tank. It turned out he didn't actually have cancer; he was recovering from a recent heart surgery. But he was bored with the cardiology waiting room, which was like the rest of this massively underfunded public charity. The Hospital for the Indigent Damned isn't graced by a single magazine except on the rare occasion when a generous Junior League lady drops by and donates her back issues of Town & Country or Polo Digest. And since his father had died of cancer 20 years ago, he figured he was entitled to a little cancer support. Let's call this guy Larry.
Supportee #2 was a gaunt, bald man with dark hollow eyes and waxy yellowish skin who also appeared to be in his late fifties. He was wearing a strange black box-like device around his neck. He informed us in an emotionless drone that he was being treated for inoperable lung cancer, and that his progress, so far, had been good. Bravo! Go team! Rah, rah! Let's call this one -- oh, let's see -- how about Curly.
Supportee #3, whom I'm afraid we have no choice now except to call Mo, was just beginning to tell us that she herself had never had cancer but she thought maybe an aunt on her maternal side once had, when Larry interrupted.
"What the h--- is that box thing you've got on?" he asked, pointing to Curly.
Bad move, Larry. Thanks to him, we spent the next 45 years listening to Curly's droning testimony to his wife's new pyramidal business scheme hawking Wearable Personal Mini Air Purifiers.
The manufacturer claims that these unattractive portable devices use a "negative corona discharge" to set up a "powerful, electrodynamically driven airflow" thereby "drawing pollutants into it and ejecting purified air at a velocity of about 100 ft/min," which is, of course, achieved by using "the latest microchip technology" to "help its wearer breathe cleaner air despite air tainted with allergens, germs, and chemicals."
Curly's soporific drone would have been conducive to a nice nap, if the supportive social workers hadn't kept interjecting loud and urgent disclaimers that these devices were NOT supported or supplied by the hospital, and that anyone interested in further information should speak directly to Curly's wife, who was presently milling around the waiting room pitching her wares to a helplessly captive audience.
And then, about eighty years later, probably the day before my designated resident's retirement party, it was finally my turn to introduce myself.
I told the group my name, diagnosis, and treatment protocol. Then I turned to the supportive social worker and told her I wanted to take this opportunity to thank the department of social services from the bottom of whatever's left of my chemotherapy-ravaged heart. Just the week before, they had helped me obtain a scholarship for eight treatments of free Neulasta, which would otherwise run me about $4,000 cash per shot, and which were necessary to prevent me from expiring due to a hangnail.
"Four thousand dollars?" exclaimed Larry. "Times eight? Hell, you'd be better off dead." Hey! Way to be supportive, Lar! Curly just shook his head and silently passed me his wife's business card. And then, thank the many unnamed galaxies, my assigned resident-du-jour (by now probably sporting a long white beard) paged me into exam room 24B. I grabbed my wig and fled.
So now I know that the real cancer support groups are impromptu little chance meetings in the waiting room. I've learned how to pick a fellow cancer patient out of a crowd of thousands. The lymphedema, the black fingernails, the bangs hanging over one ear while crooked sideburns grace the forehead. Our eyes meet across the crowded room and not ten seconds later we are locked in conspiracy, showing each other our ports and comparing hemoglobin counts. Soon a few others join us.
"I was diagnosed last May, but they haven't started treatment yet because I have a low MUGA (heart function test) score," says Suzanne. "I had a platelet transplant last week and I've felt lousy ever since," says Deborah. "I'm getting my scan results today, and I'm scared to death," says Mary. "I went through 27 weekly chemo sessions and the radiation burned me to a crisp, but look! My hair's finally growing back!" says Beth.
"They have fresh Dove Bars in the radiology vending machine," says Jason.
And like a huge supportive safety net, we pool our quarters and follow him over there.