Aviva Rubin was diagnosed with marginal-zone lymphoma in October, 2013.Fred Lum/The Globe and Mail
This is the first instalment of a four-part series about the obscene, surprising and painful world of cancer.
I would never have booked an ultrasound for 8:30 a.m. on my birthday if I'd thought the cyst was anything but benign.
It wasn't. Spoiler alert: I have marginal-zone lymphoma. Indolent cancer. What a doctor called "lazy." The kind that lies around on the couch watching TV all day.
No, don't get up. Hold on to that remote. I'll get you some chips.
Even four months in, I often feel as if I'm speeding, then floating, then speeding, trying to piece together the space junk coming at me – consequential and inconsequential debris that demands sorting.
I'm still me. Nothing has changed and everything is different. I now expect debris. My eyes are wide open. I take Ativan to get them shut. The house is messier. I can't stay on top of papers or laundry. When I have chemo or a night in emerg with a 39.6° fever, the kids go to their dads' house. These days, I make lunches but not dinners. People bring those over for us. My parents, who live a 15-minute drive from my downtown Toronto home, are stoic and optimistic. If it's falsely so, they give me no indication. My mom calls seven times a day.
When I found out it was marginal-zone lymphoma, a blood-borne cancer, I started writing, and haven't stopped. It's like a teddy bear or comfort food.
If you don't want to hear about it, don't read on. The terror, the banality, the obscene, the hilarious, the pain and the humanity are universal. Some of us just get to experience them all at once. My new lens on life is cancer-coloured.
It started with my annual Pap test in September. The stick hit something protruding into the wall of my vagina. An obstruction that my birthday ultrasound, two weeks later, indicated was the shape of a hot dog. A hot dog. A 10-centimetre-by-2.5-centimetre hot dog.
My GP said it was nothing to worry about. Even the ultrasound technician, who is sworn to secrecy, gave me the thumbs-up a week later. I'm a hard-core hypochondriac with a limited scope of concern.
I've spent my adult life chasing an imaginary free-floating malignant tumour around my body. But I'm easily reassured, so I didn't worry.
My doctor sent me back to the gynecologist, who, months earlier, had examined me for some unrelated minor ailment (clearly not carefully enough).
"She'll feel bad, and deal with this quickly," my GP said. That she did, without even seeing me again: She referred me lickety-split to the Odette Cancer Centre at Sunnybrook Hospital. My GP's office assistant phoned to let me know that.
Cancer? Who said anything about cancer?
I called the gynecologist for an explanation. She had no idea why anyone would have told me not to be concerned. The growth sounded suspicious to her. Fast-growing. (Did she miss it in the first place?) Complex mass. Liquid and solid. Worrisome. No need to waste time seeing her.
This woman had just told me over the phone that there was a good chance I had cancer. I thanked her. Hung up. Sobbed. Wrenched my back, and stepped out of my life. Cast adrift from everything knowable, waiting to be hit by space junk.
After a week of telling myself gynecologists are alarmists, and of panicking in front of my family and close friends (although divulging nothing to my children), I was in an examination room with a surgeon, a surgical fellow and an oncology radiologist all poking at me.
The radiologist accused me of lying about how much pain I was not feeling. I guess psychiatry was her minor. They took two chunks of my hot dog and left.
Ten minutes later, the gyn/oncology surgeon told me there was a good chance it was cancer: 50/50, she said.
Isn't that a decent chance that it's not?
"We'll have the biopsy results in three days. But we won't tell you anything until we have done some additional diagnostic tests – a CT, an MRI and a chest X-ray."
"But can't you just let us know … ?" I asked.
"No."
She left me flattened in the examination room. I start crying, and apologized to my mom for everything I suddenly feared I would put her through.
"I think I'm going to faint," I said, and lay down on the floor. If I'd licked it, it would have been salty from all the hard news that had come before mine.
I got a call two days later, before any diagnostic testing, for an appointment with the same surgeon the following Wednesday. Maybe they wanted to let me know it was benign so I wouldn't worry. But I learned fast: They don't call quickly with good news. In the world of cancer, quick is bad.
The surgeon tells me it's lymphoma, but not what kind. She can't comment on treatment options, prognosis, whether I'm going to die in six months. Nothing.
"It's not my specialty. I haven't seen lymphoma since medical school."
I'm booked to see hematology people in nine days. You don't die from anxiety, at least not a week's worth, but I can't fathom how I will make it that long.
My mother draws on some inner maternal pit bull, and begs me an appointment for two days later.
"Marginal-zone lymphoma. Stage 4. Indolent. Grows, but grows slowly. Excellent prognosis. Some people live with it for decades. Treatable, but there's not really a cure." I don't ask if I'll always have it. I don't want to know. I'm hanging onto the excellent prognosis.
Dr. J, the resident, is lovely and empathetic. I step back into my body from wherever I had gone for weeks. I joke about my hot dog. I cry.
Indolent lymphoma is the new good news.
The weeks that follow are jammed with shocks. The lymphoma has made it to my face, "a sizable" growth tucked in behind my cheekbone. (So, it's slothful but adventuresome?) Soon, they are doing a bone-marrow biopsy, a truly barbaric extraction involving a corkscrew and brute force.
The MRI turns up an incidental finding in my brain, like looking under the couch for the crumbs your kids have spilled and finding a dead mouse, too. The finding requires a lumbar puncture to extract spinal fluid and see if it's more cancer, although I've been told blood doesn't cross the barrier into the brain. So now my lazy-ass cancer is not just daring, but possibly Houdini-esque.
My chemo cocktail of rituximab/bendamustine will be served once a month for six months through an IV that ought not to hurt more than a spine puncture, but does. My body responds with itchy throat and ears. The drugs are halted for the doctor to weigh in. I'm shot up with Benadryl and steroids. The itching stops until it starts again.
Chemo leaves me exhausted and unfamiliar to myself. Not pain, or great nausea, but a constant foreign low-grade buzz I recover from, or perhaps adjust to, over the weeks.
From now on, I live in Lymphomaland. I'll always be here. For the first few weeks, I hide. It has taken all the energy and guts I have to pull my hands away from my eyes, put on my cancer-coloured glasses, get to know this malignant life, and begin to take the reins.
Aviva Rubin blogs about enduring, enjoying, bemoaning and lampooning life with cancer at nothinginmoderation.ca. Follow her on Twitter at @aviva_rubin and share your own cancer story here.