Sorry Helen – Waiting is the Worst

“We could never learn to be patient, if there were only joy in the world.”

– Helen Keller

As it turned out, surgery wasn’t all that difficult. At the consultation, the surgeon put us at ease immediately. That might have been because he was dressed like a custodian – checkered lumber jack shirt, faded jeans, unkempt beard. But he had a twinkle in his eye, and at least his fingers were warm when he examined me. (I would learn to appreciate this detail in the coming year).

It was a good thing he was upbeat, because essentially he wanted to know how much of my body I was willing to lop off to save my life.

When your life is at stake, this is a no-brainer: take whatever is necessary.

Thankfully, the tumour was small and the ensuing surgery was what was known as a lumpectomy (not a mastectomy) and sentinel lymph node biopsy. The plan was to excise  the tumour, shoot radioactive dye into my body to highlight any cancerous lymph nodes, and remove those. I was sewn back up, sent home with token medications and told to continue my summer as if nothing had happened. (OK so maybe he was a bit tone deaf, but he was still a nice man).

Surgery was the easy part. The harder part was waiting, because the lab results would contain the information needed for typing, grading and staging the cancer. (The tumour tells the oncologist the type of breast cancer. It reveals how quickly the cancer grows and thus determines how aggressive the treatment. Finally, along with the information from the lymph nodes, the stage is determined: is it early stage? Small and contained within the breast? Or would the lymph nodes indicate that the cancer had broken past the protection provided by the lymphatic system, and perhaps travelled further into my body?)

Waiting was complicated by the fact that it was summertime, and apparently  doctors and lab workers take vacations. Thus, I was told to expect a few weeks’ delay, as labs are notoriously short staffed in August. I stoically struggled to fill my own vacation time by travelling to Nicaragua to run an instructional leadership conference for local teachers. Each morning, I led the plenary, send the attendees off to the various workshops running throughout the day, and then retreat to my “cassita” (cottage) on the conference grounds. I spent hours researching breast cancer, trying to build my background knowledge so that I could understand the disease and its progression. I told myself the research was necessary as I wanted to make informed decisions around the looming treatment.

But the reality was that I was panicked and obsessed by the need for control. (Type A, anyone?) I’d emerge from my studies, join in on the events, and try to leave behind my growing unease at what I was learning.

I was discovering that not every breast cancer is the same. Some types are more deadly than others. One is particularly odious: Triple negative breast cancer (TNBC). It tends to strike younger women, grows fast, and has the fewest number of treatment options. Chemotherapy is the mainstay, followed by radiation therapy. TNBC patients have one of the highest relapse rates. And if TNBC comes back, it is usually a death sentence because the little beast likes to hide, only to pop up elsewhere in your body: typically in the bones, lungs, or brain. At that point, it’s Goodnight, Irene – metastatic TNBC patients live an average of 18 months after recurrence.

My gut churned out the certainty that this was my situation. My brain pushed back, insisting that I remain calm and didn’t fixate on something that wasn’t yet evident.

Mostly, I learned that waiting is indeed the hardest part. (And to dismiss Doctor Google and the shrieking tirades of doom found on cancer message boards). I flew home, and spent the remaining time yinging between my panicked gut and my sensible brain. It was exhausting.

And if I had bumped into Helen Keller, I likely would’ve punched her in the face. I had no interest in smarmy platitudes. Even if they were written by someone with the moral fortitude of Keller. (OK maybe I wouldn’t have punched her – but still.)

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