This is the second instalment of a four-part series about the obscene, surprising and painful world of cancer. Share your cancer story here
When I first got the news that there was a good chance I had cancer, I started crying and lay down on the floor of the examination room. I wasn't kicking and screaming, but it was the first hint of regression.
Toddler analogies abound in Lymphomaland – the celebration of bowel movements, covering my eyes to make myself disappear, fits of crying, endless new words to learn. (Can you pronounce bendamustine?)
I'm learning to speak Cancer, to ask nicely about why a painful test was a failure and has to be done again, to use my inside voice when my chemo doesn't get booked – for a second time. I'm figuring out when to pitch a fit and get attention, how to play well with others. I'm still having a hard time controlling my fears and anxieties in public.
And like a toddler, I'm constantly bombarded with new information. I've learned that everyone approaches its intake differently. Some read everything they can get their hands on; others simply follow instructions. When possible, I've chosen to be spoon-fed information by friends willing to pick out the shocking bits and choking hazards, chew on them, and feed them back to me in digestible chunks.
For my first few information-gathering appointments, I went armed with a two-person support team: one friend to attend to me after I'd been punched by news I was unable to block, and the second to take notes on what was said when I was reeling.
I can't be shielded at all times. Cancer uses the phone and finds me home alone. It grabs me unawares and hands me an appointment with the radiologist I hate. It hip-checks me in the MRI waiting room when an advanced-stage brain-cancer patient tells me the chemo will kill me. It's better when it's chewed up and handed over thoughtfully, in bubble wrap and not hurled at my head; but surprise is surprise, regardless of how carefully it's packaged.
After my first appointment at Toronto's Sunnybrook Hospital, where I'd been given my "50/50" cancer odds, I got a call from a nurse about a follow-up. It was carefully packaged, but the words 9 o'clock next Wednesday grabbed me by the tumour, squeezed and twisted. I doubled over crying in pain. Naked fear, dressed up as a cancer attack. A friend came over and the pain subsided as I talked myself into a diagnosis of benign. My body knew the truth but played along with my mind.
The tumour in my face also arrived by phone. The doctor called to tell me, which was very sweet, so I wouldn't be surprised by a cold-call request for an MRI. I pulled my newly involved head off the kitchen table, grabbed paper, and started barking what I thought were reasonable questions about brain cancer. "It's your face, not your brain," he kept saying, kindly.
Another day, I was blindsided at the hospital registration desk. Instead of "Hi, your appointment is in Clinic D; you can do blood first," I got "You have to do blood before your bone-marrow biopsy." The words bone and marrow sent me irrationally to transplants and leukemia. I spun around three full times trying to locate my support team of friends, who were only 15 feet away. In that moment, they may as well have been in Buffalo.
Some of my information guardians are self-appointed, well-meaning friends and acquaintances who send unsolicited links, tips, stats and warnings. I don't have the heart to say Thanks, but no thanks. I simply press Delete.
On the informed continuum, I'm a resister operating on a slightly higher than need-to-know basis – more informed than some, far less than others.
At chemo, I got to talking with someone who also has lymphoma. I asked if he was on the bendamustine-rituximab combo. He had no idea.
"What kind of lymphoma do you have?" I asked.
"I don't know," he said. Our conversation about cancer would stop right there.
"I'm blogging about this," I said.
"I don't go on the computer. Too much stuff out there."
"I'm just writing about my own experience."
"No," he said, and with a wave of his arm dismissed my blog, the Internet, social media, Wikipedia, Toronto weather, Google maps, and who knows what else.
There are no right answers, or questions. There's just managing in a way that's tolerable. Despite suggestions proffered through world-class cancer websites, pamphlets, chat rooms and unsolicited opinions, what works is individual. And it'll shift from day to day and chemo to chemo.
People might be shocked at my aversion to learning more about my cancer bits. I might be baffled by this man's need for only the bare minimum: when he has to be someplace, for some kind of treatment, for some kind of lymphoma.
I waited weeks to get results from my lumbar puncture, to tell me whether the incidental finding on my brain that turned up during the MRI was nothing, or more cancer. The doctor and nurse had contradictory ideas about how long it would take. One day. Two weeks. Or months, as it turns out, until my oncologist told me the test had failed and we had to do the lumbar puncture, and the anxiety, all over again. At least I've learned to limit the escalation of my panic to approximately 24 hours in advance of potential information.
Like a toddler, I'm unequipped but powerless to do anything but learn my way through it all, throwing the odd tantrum when I'm scared or overtired. Everything here is foreign, but slowly getting less so. Cancer is a whole new place I have to grow up in.