‘With luck’, the doctors said, ‘you’ll have (this) and not (that).’ I learned the ‘with luck’ was bait, a ruse to lure me into hopefulness. Sure I had breast cancer; lots of people do. My family doc got to tell me it was grade3/3 (most active) and in 9/10 biopsy samples (it was everywhere in my breast) and I was ER and PR negative. That means the cancer lacked the receptors that state-of-the-art cancer drugs hook on to. Bottom line, the drugs to keep me in remission don’t (yet) exist.
En route to the first mastectomy the conveyor belt had lots of pit stops. My favourite was on my tummy on a bed with a circle cut out of the mattress. The hydraulic lift hoisted the bed for the radiologist to work on the dangling breast. There’s no way to keep a straight face when an unseen man tickles your boob as it obeys the law of gravity. Then there’s the sentinel node and the staging and the genetics and the blood tests. I got my first cell phone to keep track.
Not only was the cancer grade 3 of 3 (should I be proud it’s a super-achiever?) but each grade has 3 ranks and it was at the top end of the third category, = 9/9. That’s known in medical jargon as “a bad actor.” Darn. I’ve taken acting lessons and had so hoped to be good at it.
I learned about researchers seeking breast tumors and donated the tissue formerly known as my left breast (now there’s an image – my breast in a petrie dish). It was satisfying to wake up from surgery thinking my breast had found a good home. “Yes”, said my daughter, Beth, “In the science freezer next to the peas and carrots.” Fingers crossed my rare tumor to play with helps them help other women.
Jeanie Kanashiro, the wonderful surgeon, asked how she should tell me the pathology results. I said: ‘I’m tough, give it straight up.’ Whew, whenever the results could’ve been on a continuum of not so bad to awful, they were awful. Here’s what I recalled Jeanie said when I regained consciousness: “You’re stage 3, possibly stage 4. You’re Triple Negative so there’re no post-treatment drugs that’ll work for you. There wasn’t a clear margin to the chest wall, which means I couldn’t get it all. I felt nodes in your axilla (that’s an armpit) I think are cancer but it would leave you with a painful, nonfunctional arm. I opted to leave your tendons and nerves intact and trust the chemo and radiation will get what I left. In this case, the surgery was diagnostic, and the chemo and radiation will have to be curative.” I said, “Thanks; you made the right decision. Can I eat now?”
I could see everyone’s look when they talked about Triple Negative Breast Cancer (TNBC), but what was ER, PR, and HER2 negative? I’ve been such a positive person, how did I incubate such a contrarian cancer?
What I learned about TNBC nearly felled me. The four common words in the research articles were: “bad outcomes” and “poor prognosis”. TNBC is a recently identified, aggressive breast cancer subgroup, hard to treat, comes back often, kills fast. Well, fast is better than lingering. I delegated reading the literature to my partner Decker.
Oncologist Dr. Danny Heng, set me at ease. He said, ‘The answer to most questions about TNBC is ‘I dunno’.’ Thereafter, I’d ask a question, he’d grin, shrug, and we’d say together, ‘I dunno.’ It worked better than false hope and bullshit. The answer to most questions in conflict management is “it depends” so I’m okay with ambiguity. Thanks Danny and nurse practitioner Cindy Railton, for your honesty.
Danny gave the ‘do nothing’ option, in which case I had between 4 and 9 months. Eliminate that. No one knew the best treatment so I went for dose dense, the most toxic and most treatment cycles on a guess backed with prayer and a phone conversation with Canada’s TNBC expert, Dr. Rebecca Dent. Thanks to my sister Andria, and Dr. Neil Bernstein for facilitating that connection. Decker and I had many conversations cuddled at night, struggling to decide. The cliché ‘as if your life depended on it’ hung over our heads. If it turns out dose dense wasn’t the right answer, well, my bad.
Treatment ended; I asked about follow up. Danny said, ‘there no need.’ I was stunned. TNBC is a bad actor that adapts to chemo and lives on to recur. And Jeanie said she didn’t get it all. Isn’t the received wisdom to find it early? Danny explained, ‘Find a recurrence early or late; the outcome’s the same.’ It took a full minute to comprehend. How long would I want to know I’ll die soon?
I insisted on being followed anyway. The cancer was triple negative and I remain triple positive. After all, I got the sexy new variety, the cancer interest du jour, the tough subgroup everyone wants to conquer. If it recurs, someone somewhere will have something new. I just have to stay alive long enough to die of other causes.
In conflicts, everyone can agree on the facts and disagree over what those facts mean. In the process of managing conflict, we hear everyone’s Truth. The search for the truth about cancer can be like that. I might have had a diagnosis of TNBC, a bad actor, but the script of that play is still mine to write. I’m not searching for the Truth of the diagnosis or treatment; my theatre of life is about – as my hero Viktor Frankl taught me – the meaning of all this to me. There’s a workshop I’ve delivered on choosing your conflict attitude. Conflicts and problems are what happens in life; reaction to the conflicts and problems are within our control. Cancer – all three kinds – chose me. I get to choose my attitude to it.