Spinal cord compression made cancer seem very small.
Once symptoms of spinal cord compression started, they progressed rapidly. Each day or two, another part of one of my limbs went numb. My right foot, my left forearm, my right lower leg.
I could feel pressure in these areas, but I felt as though I had a layer of latex over my skin, as though I was wearing a pair of rubber gloves, or a wet suit. Climbing a flight of stairs, something I normally do effortlessly, my legs had become heavy. I was breathless.
I emailed my surgeon’s administrative assistant assistant a couple of times, left several messages, but received no response.
My right thigh held out the longest. I remember cycling back home from Kensington Market and thinking to myself, “at least I have sensation in my right thigh.” But by the time I got home, it too was numb with peripheral neuropathy.
Nevertheless, I continued to exercise five or six days a week. My daughter, Emily, and I were gym buddies. We did cardiovascular work, then abs, gluts, and arms. Emily had a habit of increasing the number of reps on a weekly basis. “If it doesn’t hurt, we’re not working hard enough,” she said. I couldn’t argue.
Occasionally, I jogged. June 16th was the last run, I realized when I made it home. My legs were like noodles. Even taking small steps, I could feel a lack of control as each foot landed. I just wasn’t connecting with the ground, and I was afraid of falling.
It was the eve of Critical Link 7, an international conference held every three years. This is the first CL conference in Toronto. Back in 2010, Glendon College was awarded to host the 2013 meeting. The remarkable Dr. Andrew Clifford, CL7 Conference Chair, was preparing to launch the first Masters of Conference Interpreting program in Toronto, and the spanking new Centre of Excellence, an architectural dream of a conference centre, was under construction.
I am on the Board of Directors of Critical Link International, an organization dedicated to the advancement of community interpretation (aka public service interpretation) around the world, promoting and ensuring access to public services for immigrants, refugees and Deaf consumers through professional interpreters.
I was also on the Local Organizing Committee. I had to come out of the C closet to the Board and to the Committee immediately after my diagnosis. My friends and colleagues on the Committee took over my responsibilities, full of compassion and support.
I participated in CL7 as I was able, and when I wasn’t, I slept on couches in the faculty lounge (vacant before and after the lunch hour) or in Andrew’s office.
Only Jane Langes, then Treasurer of the Board, knew about the tumour on my spinal cord. When the conference was over, I disclosed my tumour and my symptoms to the Canadian members of the Board. They are all dear friends, and I was relieved to tell them.
I was still unable to get an appointment in the Spinal Cord Clinic, in spite of my repeated expressions of concern as I rapidly lost sensation in all of my extremities.
I finally received a phone call from the nurse practitioner, who informed me that unless I was falling or dropping things, I didn’t need to see the surgeon.
“That wasn’t what Dr. Fehlings said,” I told her. “He said I should call as soon as I feel numbness or tingling in my hands or feet.” She told me not to worry.
I wasn’t worried. I was fucking terrified.
Soon after that conversation, I fell. Badly.
I landed on my left knee, right in front of my house. I was alone, bleeding, and it took me a few minutes to get up. I left another message with the administrative assistant.
I kept Debbie Honickman, my family doctor, informed of my changing condition. I had her mobile number and her personal email. She was on holiday when she called me. “If you can’t get an appointment with your neurosurgeon tomorrow morning,” she said, “go to Emergency.” This was a direct order.
On June 24, I presented in the Emergency department at Toronto Western Hospital, over two weeks since the onset of symptoms. Emily brought me food, clothing and toiletries, and reading material.
I stayed overnight, mostly awake, waiting for an MRI that took place around 4:00 a.m.
Later that morning, I received an electronic birthday present: a slide show of my best friend, Jane, and her daughter, Julia, with an invitation to visit them in Winnipeg, airfare and all.
The sentiment, the generosity and the slide deck moved me to tears. However, from the stretcher in Emergency, with my numb limbs, I truly questioned whether I would be physically able to make it to Manitoba in the near future.
On June 25, my birthday, I got a pass to leave Emergency for an appointment with Eitan Amir, my medical oncologist, whom I admire and adore. They put me in a cab to Princess Margaret Cancer Centre.
Solomon and Emily met me at Princess Margaret, with a set of clothes and some eye make-up.
I’m sure Shinaz, a wonderful nurse practitioner at the Breast Clinic, could see I was in rough shape. She took me into a consultation room and asked me how I was. I exploded in tears. When I could finally speak, I told her I’d reached a stage I’ve been trying to avoid since I was diagnosed: I look like a cancer patient.
By the time the appointment was over at 2:00 pm, I was wasted. I’d been in hospital 21 hours, and tomorrow was another chemo dance. Grand.
I called the Emergency Department, told them I was too tired to return, and asked for the neurosurgery fellow to call me at home. I had an appointment booked with the fellow on the following day. Whatever he had to tell me could wait.
All day I was up in the air about whether to cancel dinner. My daughter convinced me it would feel good to get dressed up to and celebrate in style. I deserved it, she said, after all I’d been through in the last 24 hours.
I was indeed surprised by a large group of my closest friends, including my staff from the hospital, in the private room upstairs at Bar Italia. Surprised and beside myself with a buzz of warmth and love, I cried for the second time that day. After the reception, a smaller group dined together downstairs. The event helped to push the Emergency visit back into the past.
When I met with the neurosurgery fellow in clinic on the following day, he handed me a consent to treatment form, dated the day before. “We were going to get your consent when you returned to Emergency. You never came back.”
“I called,” I said and explained the circumstances.
He changed the dates on the form and initialed the changes, then passed it to me. I was to have surgery in less than two weeks. The procedure would take 4-5 hours, he said. My surgeon, Michael Fehlings, and I had already discussed the proposed procedure and risks.
I signed without asking additional questions, but I asked the fellow to modify the document to make it explicit that Michael, and not a trainee, would remove the tumour. We both initialed the change.
Not removing the tumour would eventually result in paralysis from the neck down, and death. The risks of the procedure, ironically, were exactly the same.
I told my parents. They called my siblings.
Then I called my attorney to update my will. I gathered all of my financial and life insurance information. My daughter was added to my safety deposit box account.
I needed my family. I asked my sister-in-law, Patty Abraham, a health professional (and marathon runner/cyclist), if she could come the week before the surgery. She was able to get a week off from work on short notice. Just knowing that she would be coming lowered my blood pressure. We get on like a house on fire, and she’s a master at both caring for others and logistics. She’s also hilarious.
Coincidentally, both my older brother, Carl, and my father, Carl, had booked a visit to Toronto at the time of surgery, so we were well supported.
News of the spinal cord tumour and the upcoming neurosurgery spread across our community of love, and a flood of calls and emails reassured us that we were not going to experience this alone. Our friends wanted to help in any way they could. Of course, many offered the gift of food.
My very generous friend, Harriet Eisenkraft, who was also president of our inclusive, egalitarian and beyond-liberal Jewish congregation, Shir Libeynu, volunteered to coordinate food scheduling and delivery.
Patty was remarkable. She took over as a friend/sister/project manager and step-mother. She counselled all of us, fed us, got the house cleaned up and in order. I had been trying to get my 16-year-old son to excavate the unused books and tchotchkes from his room for years—with Patty’s support and patience, the job was completed within an hour. During the week, she prepared meals too large for us on purpose, so that the leftovers would be in the freezer when I returned from the hospital. I was able to talk to her as I couldn’t talk to my kids or my parents. I don’t know what I would have done without her.
On surgery eve, I had the difficult discussion with my children. If the surgery was not successful, I did not want heroic measures to be taken. No life support equipment. But my children have known this for years.
Emily said, “We know, Mom. If you’re not you, you don’t want to live.”
It’s a lot to consider for a 23- and 16-year-old. In fact, I would think it’s terrifying.
I spoke with Patty as well, and my brother, Carl, an infectious disease specialist and drummer. “If I have to be flown to Switzerland, it’s not my kids who are going to bring me. It’s you.” They understood.
I made several copies of a list of people who needed a call as soon as I was out of surgery. Emily and Patty promised they would take care of it.
Without anyone uttering it, I’m sure we were all thinking the same thing.