Malcolm Gauld
40 Years Ago: A First-Year Head of School
* The band… not my dearly departed friend, Mike, RIP
The Short Story: How much adverse skin reaction am I willing to put at risk in favor of a treatment that might work?
The Longer One:
One of my favorite self-parahrased quotes is attributed to Danish philosopher Soren Kierkegaard (1813-55): “Although life must be lived forward, it can only be understood in reverse.”
It comes to mind whenever I write these Updates. In the midst of writing, I invariably find myself thinking: Should I press “Send” now?… Or… Should I wait until the next “thing” happens — appointment, test, drug, scan — so that the reader will have the most up-to-date overview of what’s happening? Talk about a question having no right answer!?!
My cancer journey began 15 years ago on a February day. I was with my son (then 16) browsing in a Border’s Books — remember them? — when my local urologist caught me on my cellphone. Although he was highly reluctant to give me the results of my prostate biopsy of a week before over the phone, my persistence won out, causing him to calmly and monotonely (yet another invented word?) offer a three-word response: “You have cancer.”
Three years later — May of 2014 — I had my prostate removed at Boston’s Mass General. For the following 8 years, my view of cancer was “been there; done that.” In the spirit of Kierkegaard, I did not yet know that there are cancers and there are also… CANCERS! (And to further confuse you, me, and just about everybody else: Prostate cancer can be cancer and it can also be CANCER!)
Then, in 2022, I went to see my MGH oncologist because I seemed to be urinating All. The. Time. Given that I had joked around with lots of guys about the same phenomenon, I figured a quick visit to Boston would score me a prescription that would fix it and then I’d be on my way. Instead, I wound up with a diagnosis of bladder cancer. Sitting here four years later at Stage IV, I think I understand where matters now stand.
Paraphrasing what one of my “-ologists” said, “There are two challenges ahead. First, we believe we have begun the immunotherapy combination treatment (Padcev/Keytruda) giving us the best chance to counter the cancer in your abdomen. But given the way your body soundly rejected the immunotherapy treatment (Opdivo) of nearly a year ago — Note: the skin on my legs broke out in incredibly painful lesions and boils — we cannot be sure that your body will accept the infusions this time around. If it doesn’t accept it, we will then need to consider a regimen of drugs that will counter the skin problems, while simultaneously keeping in mind that most of those drugs tend to weaken the power of the immunotherapy to attack the cancer. (Note: Therein lies at least one Catch 22.) Second, assuming your body will accept the treatment, the question then turns to: Will it effectively attack, shrink, and sequester the cancer in your body?”
Hence, it comes down to: How much adverse skin reaction am I willing to put at risk in favor of a treatment that might work? This month was the first time that any of my doctors have said, “To be clear, you don’t have to do this.” While this statement has always been true, this was the first time it has been explicitly stated. It certainly got my attention. And I appreciated her forthright honesty. But up until this point, everything we have done would basically fall under the category of implied consent within an atmosphere of confidence shared between doctors and patient. This time around a sense of uncertainty has entered the dynamic. While I have always known that this day could come, I now can’t think of anything to do other than to go all Kierkegaardian (That has to be a new word!) and live it forward. So that’s what I’m doing.
So, it’s goggles on… face into the wind. Next week, I will do my third infusion. This is the week the Keytruda will be added to the equation.
Think I’ll press send now….. Onward, Malcolm
