Garrulous

Tonight, I’ll attend a meeting of “Survivor Portland,” a support group for “young adults between the ages of 21-40 who have been diagnosed with cancer” (I finally looked up the precise description), and though I never imagined I’d get excited about anything associated with the word “cancer,” I’m really looking forward to it.

For one thing, this meeting – or rather, a little meeting before the meeting – will be filmed. The Lance Armstrong Foundation wants a few minutes of non-audio footage of just such a group for a video it’s producing on young adults with cancer. Members who wish to participate have been invited to come to the meeting 20 minute early so they can be taped “sitting around the table talking & expressing emotion,” or at least silently pretending to do so. I’m still trying to decide if I should arrive early. I could be filmed feigning sorrow and empathy and encouragement, perhaps gesturing pensively to my mouth and throat when I mime telling my own tale. It could be cool to feature in a globally distributed film (the LAF has some serious reach) concerning an issue with obvious personal relevance. Then again, I’m not much of an actor and I’ve never like being photographed. Many a photo of me consists of nothing but my open palm reaching for the lens.

And I’d hate to be thought an opportunist. I’ve only attended the group once before, last July. “We haven’t seen him since the summer,” others might think, “but now that there are cameras rolling, De Niro here makes a return appearance. The nerve!” But I haven’t had the chance to return until now. (Well, I had one chance but the time I spent idling in traffic beforehand while giving a co-worker a ride home killed it.) The group meets the second and fourth Tuesdays of every month, and though my schedule varies – often wildly – from week to week, I always seem to work the second and fourth Tuesdays. Until now. Until this December.

I don’t actually think the group would judge me should I show up for the filming. From what I remember of the members present during the July meeting, they’re a fine bunch of people. Understanding. They understand that, hey, sometimes things come up and get in the way. Work. Life-threatening disease. And if this meeting begins at all like the last one, I won’t have to feign a thing.

I came to the meeting last July despite certain qualms I had about a such a support group, reservations about encountering people still sick and perhaps even confronting death – which you’ve got to assume is a distinct possibility with something involving people with cancer. Of course there were people still in treatment. There was a bald head and face with no eyebrows, belonging to someone who sat just to my left. And, as it turned out, someone had died. I gathered that much from the conversation among those already present when I entered the conference room.

Two women – one middle-aged, one around my age, both oncology social workers – led the meeting. Both welcomed me and took pains to assure me, as I fought the urge to bolt from my seat and sprint to the elevator, that deaths in the group were actually quite rare; they’d only experienced a handful in its several years of existence. Still, there was the fact of Shadyah, a longtime group member and young mother who’d passed away just a few days earlier after a lengthy fight with late-stages cervical cancer. The meeting began with people taking turns sharing their thoughts and memories of her. The older social worker, who’d known Shadyah the longest and best, lit a large candle and began a long reminiscence/eulogy that ended with her more or less sobbing. Then she automatically passed the candle to the person on her left: me.

This led to a slightly awkward second. “Oh!” the social worker said, realizing the instant the candle left her fingers the potential discomfort or embarrassment here for the newcomer. She began to reach out as if to take the candle back, then gestured instead to my left. “Sorry. You can just pass it along, if you like.”

But I held onto the flickering candle. Now, I loathe public speaking, even among small groups (there were about a dozen people there) and, despite any illusions or delusions I may sometimes harbor about my character, I can admit that I’m not usually a picture of grace under pressure. Maybe “Strain Under Pressure.” That would make a suitable caption for a normal image of me under duress. I can panic and snap and fold in on myself. I had started to when I heard about Shadyah: though I didn’t know her, such a death – and the thoughts it inspires about your own death – was the thing I feared most about coming to such a group, and here it was, the first thing I’d encountered. Looking around the group during the first social worker’s turn, though, I realized that of course this fear belonged to all of us. Some of them knew Shadyah, so the loss was personal and especially painful, and we all felt terrible for her little girl and husband, but we shared above all else, and I could see this, I swear, on everyone’s face, the feeling of there but for grace of God or good fortune or the miracles of modern medicine or what-have-you go I… and maybe still could, should something go wrong. Recognizing that we were all in this particular foxhole together calmed me. I was suddenly and strangely happy to be sitting in that particular seat. In what was for me a moment of uncommon poise, I held the candle and said “She sounds like she was a wonderful person, and I’m just sorry I won’t have the opportunity to meet her.”

After talking about Shadyah, we went around the table again and talked about ourselves. And if I may say so, we had some interesting stories. We’d experienced some unique things. We knew some things the public-at-large didn’t necessarily know. For instance, things such as: chemotherapy doesn’t necessarily make one’s hair fall out. Before my own experience with cancer, I assumed it did. I heard “chemotherapy,” I pictured a bald head. And profuse vomiting. But first, a bald head. This is what the elderly aunt of one member of the group must have imagined when she heard that her niece was diagnosed with colon cancer. She immediately mailed the young woman a wig. (I don’t remember the woman’s name. With a few exceptions, I don’t remember the names of the group’s members, though I clearly remember everyone’s cancer and the story behind each.) Why the aunt had a wig, the niece couldn’t say, and the color and style of the gift didn’t suit its recipient, who was in her mid-thirties and like Shadyah, a mother. Not even close. This was a wig, she guessed, from the 60s, a thing better suited now for a Halloween party, something you’d put on for a sight gag. Plus, she never needed a wig, of any sort: “I didn’t lose any hair from chemo. It seemed to grow a bit darker and coarser afterwards, but none of it fell out.”

Whether or not a person loses hair from chemotherapy depends on the type of drug administered, which itself depends on the type of cancer being treated – and there are a lot of different types. If you learned nothing else from the people in that room, you learned at least that cancer is stunning in its variety. This is one reason I think the group, if it looks anything like the members assembled that July meeting, makes a fine choice for the Armstrong video. We were a grab bag of cancers. A veritable United Nations of cancers, each representing a distinct form of the disease and area of the body it had colonized (brain, breast, tongue, testicles, and so forth). We had it covered, literally, from head to toe, and no two alike… well, except for the two women who shared colon cancer.

The first was the mother with the unused wig. She was 18 months past treatment and looked good, healthy and full-figured, cheerful and without complaint. She recounted what must’ve been a painful, grueling, and – with two small children – incredibly exhausting ordeal like she was discussing a movie she’d seen the week before. Still, there was a certain tightness at the edge of her smile, a slight shadow in the expression that I don’t believe could be detected or deciphered by someone who hasn’t been through a similar experience. It said, “I’m now this far past that piece of hell, and I’m not going back, knock on wood.” Everyone in that room who was out of treatment had it. I’m sure I did, and do every time someone asks about my health. “Well, I’m not officially in remission yet, I have a ways to go actually, but the scans are clean so, so far so good.” Fingers crossed. Knock on wood.

As for the other woman with colon cancer, her anguish was written clearly on her face for anyone to see, civilians included, since she was currently in the middle of treatment. Bony under wrinkly sweats I imagined she was probably living in those days, with limp, stringy hair, a sour squint behind her glasses, and gestures that appeared pained, arthritic even, she looked 35 going on 75. She’d probably be the first to agree: “I’m just sick of feeling like an old person. All I can do is lay around and watch television.” She was weary of the constant fatigue and neuropathy, another thing we in that room knew. (Actually, while nearly all the others dropped that word, “neuropathy,” and talked about the pain, numbness, and tingling in their fingers and toes, I never experienced it; it was a new word and idea to me.) Being in the thick of it, she couldn’t help letting a little bitterness and discontent seep out. “Well, at least they’ll let me have juice now,” she sighed, raising her Snapple bottle in an ironic, half-hearted toast. “That’s… something, anyway.” It was something but maybe not enough to compensate for weeks with no food but plenty of pain, diarrhea, and all the unpleasantness that comes with toxic drugs and irradiation of the bowels.

Another thing I loved about the group: we had one big thing in common within that commonality were plenty of differences. Some aspects of that woman’s suffering were painfully familiar to me, while others I had to imagine. Everyone’s story had something in it that surely made everyone else in the group think “Imagine that!” Or possibly “Holy Shit!” There was a collective gasp and “Ouch!” when my turn came and I arrived at the part where a portion of my tongue was carved out. Some of the others’ stories made me gasp and swear. There was the tall blonde ER nurse who was diagnosed years back with a Hodgkins lymphoma so advanced her doctors were certain she was a goner. Now she was a year into remission and had become a cancer volunteer, advocate, and speaker so prolific she’d won a few national awards and been nominated for a few more at the time of the meeting. There was the bald, brow-less fellow next to me, also in the middle of chemo for a rare form of cancer inhabiting his left foot. He was still waiting to learn if he’d lose the foot or not. Then there was the married couple. The husband, some sort of environmental engineer, had fought and lost a certain part of himself to testicular cancer. This isn’t the most common form of cancer out there but to hear him tell it, his was just like the flu, an inconvenience that had come and gone during the middle of the disease afflicting his wife. She had a form of brain cancer so rare its like had never before been seen, a strange occurrence where certain proteins in her brain were turning into malignant crystals or something. It took doctors and researchers at OHSU months just to devise a chemotherapy treatment for her, each round of which entails opening her up and sneaking a catheter up through her torso and into her brain to get the drugs past the blood-brain barrier. She’d had, at that point, 24 rounds of chemo – or 24 full surgeries. Prone to seizures, she wore a medical alert device around her neck and talked somewhat haltingly, but that she could talk at all I found amazing. Imagine.

Before this woman’s story but after a few other accounts of difficult treatment and suffering, another woman questioned whether or not she actually belonged in the group. Sure, she’d had a tumor in her brain the size of a walnut – discovered after her parents happened upon her in the middle of a grand mal seizure – but it had been removed almost immediately and her chemotherapy drug, just a pill taken daily, had no discernible side effects. In short, she hadn’t suffered, not really. But she was still in the middle of chemo and not to the far side yet, and I could see, I swear, some of that tightness in her smile. She was sure she was fine, but fingers crossed, just in case. And she wasn’t sure she belonged? The rest of us protested immediately. A walnut-sized brain tumor?! Holy shit! C’mon, of course you qualify. I was the newest member of the club, but I protested as loudly as the rest. I’ve only made it to one meeting so far, but I’m certain I belong.

This entry was posted on Tuesday, December 8th, 2009 at 5:04 pm and is filed under The Big C. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.