On April 25 of this year, I added a brief comment to the description of my photo-of-the-day entry, “Was rescanned this afternoon. Still cancer-free.”
My particular cancer, Myxoinflammatory Fibroblastic Sarcoma, has a high recurrence rate and spreads quickly, so I will be scanned multiple times a year for the rest of my life. I probably won’t mention clear diagnosis on social media going forward, but it was novel in April to have had my first post-surgery scan. Ideally they will become boring and routine.
That said, late on May 13 I received a call from the cancer centre to let me know that my x-rays were not clean after all. The doctors found a spot in a right-side rib that was concerning and that they couldn’t identify. I was to report to radioactive medicine the following Wednesday for a bone scan. The caller used the phrase “nothing to worry about” at least five times in the brief call. That’s one of those phrases that seems less genuine the more often it is used.
My mind couldn’t help but leap back to my original diagnosis last fall when my lead oncologist told me, probably more casually than he intended, that “If it gets in your chest, you’ll have about four weeks to live.”
I’m obviously not trained in medicine, but my amateur understanding is that my rib is in my chest. And my math skills are still pretty solid.
This news came as my teens were already scattering to their weekend activities and a week of living at their mom’s house. I hadn’t processed enough to try to wrangle them back and give them this nebulous bit of news. With nothing really to do or to report, I didn’t see a reason to lend any weight to their weekend. Though that decision still bothers me a little, so perhaps it was not the right one. I’ll continue to evaluate that.
The net result was an anvil of uncertainty hanging over my weekend and following days. At one time in my life, the test itself might have been a bigger deal. It required reporting to nuclear medicine first thing in the morning to be injected with a radioactive cocktail that would then need three hours to circulate in my blood enough to permeate bone. Then an hour of needing to hold perfectly still (with some straps to “help”) on a bed slab as square-meter camera panels slowly panned all around me. For a severe claustrophobe, it wasn’t quite as bad as an MRI, but as it was an inch from my nose for way too long. I’ll perhaps ask to have some magazine articles taped to it for next time.
I was told to expect a call in 3-5 days with results, good or bad. “We don’t believe that no news is good news,” the nurse told me. I was too out of it to think to ask if those were business days or planetary rotations. (I foolishly didn’t consider the possibility of those biblical “unspecified time period” days.)
I’ve had the opportunity (“pleasure” is the wrong word, perhaps “honor”) recently to speak with individuals who are having their own cancer scares. My advice has been that the not-knowing waiting-to-hear period is actually the worst part of all of it. The part to live through. Once the diagnosis has been made, the body and mind can snap into battle mode and take whatever seeming torture the treatment brings as steps forward. But in the time of waiting, the mind is left to speculate and mine is capable of conjuring unnatural darkness. (Fed all the more by scraps of rational possibility.)
The mind also has amazing abilities to protect us from realities too big to handle. Distractions and responsibilities allowed me to live the remaining days with a sense of a cloud, but mostly unaffected in general tasks. And, frankly, I’ve already made a lot of peace with the reality of the temporary nature of my life. Any of us could be hit by a bus any day… I just might have the fortune / misfortune of seeing mine coming. I don’t fear or lament the end of me, but merely ache for the impact to my children and others left. (My personal mortality issues are quite different, perhaps for another day.)
But nor will my brain leave me in peace, rather the next eight days were punctuated with random assaults. “If I’m not going to be here, why am I paying this cable bill?”, it would question. “You have one month, and this is what you’re doing?” was common, perhaps loudest when mowing my dandelions.
The greatest trigger was anyone asking me to look ahead past the next week. “Do you have plans for the summer?” is well meaning conversation, but I had to bite back hard to not retaliate with a sharp, “I won’t be here.” Kids and life require some forward looking, but I was completely incapable. There was a big black curtain separating the day I was occupying and those purely hypothetical future squares on the calendar. They were days of existing, but not living.
One of those days was my birthday. Years ago, birthdays became crisis and crossroads days for me, not in any way something to be celebrated… more of an anger renewal. My kids and I had the day before my birthday off of school and work for Canada’s Victoria Day, so we hit the zoo, despite the sn0w-like rain, and had a great time together with a special dinner and daughter-crafted cake. That left my mind undistracted on my actual birthday… not a good idea.
I was ready for either news. Either way was welcome.
On Thursday, 13 days after the original call, I finally heard. It was an administrator talking to me and not a doctor, so that automatically meant good news, but also less information. The spot on my rib was “not cancer” and “unconcerning”. What is it? Since I’m stubbornly unwilling to make an appointment with my doctor only for clarification beyond his call instructions, that revelation will have to wait for my next scans in August.
It’s just a few days past the news now, but I’m looking again at the dandelions that have since sprouted. I have an indeterminate time here, is that what I’m doing?