Update #18 – The “Stuff” Update: Fun, Gaman/Mimamoru, Loss, and Prayer

Fun

Before getting all heavy here, just wanted you to know that in the midst of all this cancer stuff, I’m still having as much fun as ever.  In fact, just last weekend, I celebrated my 50th reunion at Bowdoin.  In addition to reconnecting with lifelong friends, I made new ones with folks I barely knew back in our school “daze.”  (Something about Bowdoin just makes that happen.)  I also got to croon some blues — vocal and harp — during the cabaret we conducted. (For the record, I got tapped for three numbers: Jimmy Reed’s “Big Boss Man”… Randy Newman’s “Dayton, Ohio 1903″… and Big Joe Turner’s “Shake, Rattle, & Roll.”)  We truly had a blast.  As proof, here’s a pic of me and two good friends (Bill Janes and Anne Ireland, for you Bowdoin folks) up-front and photo-bombing our own class pic. (For you Hyde folks, you’ll find Ken Grant two rows behind Bill, left of yellow sweater.) Hey, we’re already talking about the next 50 years… LOL.  

Now, for the The Medical Stuff 

During the past month, I have completed three weekly “sensitization infusions” of PadCev at MGH Boston. These are 7AM-to-3PM treatments — pioneered at MGH and now used worldwide — ones that should normally take less than an hour. As previously noted (see Update #16), this change-of-strategy is a result of my body’s adverse reaction (4/20/26) to the “normal” infusion approach.  Think of it as akin to giving a small dose of peanuts to someone with a peanut allergy.  The idea is to gradually “train” the body to accept this particular medicine.

Because these sessions went well — aside from the near loss of my sense of taste (Yeah, bummer, for sure.) — I have now “re-graduated” to the more normal infusion process back at MGH’s Portsmouth, NH affiliate. (A major improvement in the traffic/parking department!) That said, the addition of Keytruda remains in pause mode given that my docs don’t currently feel that my skin — esp. my legs — has fully returned to a state worth the risk of re-introducing Keytruda’s full-on immunotherapy to the mix. I’m also on a regular schedule of CT scans but these are to rule out new cancers as opposed to eradicating old ones.  Again, I’m Stage 4: The objective has moved from cure to containment.

So, as I wrote in #17, I remain bullish on a bet in the form of a dilemma: “How much adverse skin reaction am I willing to put at risk in favor of a treatment that might work?” My current answer: as musician Dan Bern sings in “I’m In,” my 2024 Song of the Year: “I’m in. I’m in. Throw my hat in the ring. My chips are stacked, brown, yellow, white, black.  I’m in.” (See Mr. Bern’s excellent 2024 Starting Over album.)

Switching gears, I note that since I began writing these updates 18 months ago, among the countless numbers of people who have so warmly supported me, many have said something to the effect of, “I could never handle this as courageously/good-naturedly/humorously/positive-attitudinally as you have.” I have two responses to that: 1) “Profoundly heartfelt Thanks.” And, 2) “Yes you could… and you would.”

Re: #2, it’s amazing what you can do when you accept… make that fully accept.. that you really do not have a choice. Allow me to reiterate with a story.

Summer, 1967 – 10 Miles Offshore from Rockland, ME
At 13, I accompanied my father on an overnight excursion to the Hurricane Island Outward Bound School, 10 miles offshore from Rockland, ME.  My father’s motivation was two-fold: 

1) Hyde had just completed its inaugural year and Dad was considering ways that he might incorporate the Outward Bound philosophy and program into the curriculum.  

2) He wanted to test his fear of heights with some cliffside rappelling. (Hey, That was how he rolled.) 

During our 36 hours on the island, I developed a random interest in all the knots the instructors were teaching to the students.  As we transitioned from learning station to learning station, something began to trouble me: It seemed as though the instructors were painstakingly detailed when it came to teaching students how to tie, say, the HIOBS’ boats to the docks, but far more casual when it came to teaching them how to tie their bodies — read: their very lives — on to the rappell lines.  At one point, my budding adolescent curiosity caused me to blurt out this observation to the instructor. He replied with a wink, “Oh, they always tie those knots tight enough!”

Suffice it to say that there’s a reason why the expression “Do or die” has been around since the 15th century. (Yeah, I checked.) 

Anyway, I recently had a discussion with a friend, a fellow career educator, who pushed me to further explain my attitude/disposition in the interest of perhaps helping others facing similar circumstances either as patients and/or as their loved ones.  So, moving from switching gears to switching, er, vehicles… you asked for it. But before proceeding, let me clarify: I ain’t sayin’ I’m “all that.” This is just some of what I’m doing to keep on keepin’ on.  

Gaman & Mimamoru
Although they may have never heard these words — Gaman & Mimamoru — my parents unknowingly honored them in raising my sisters and me. In marked contrast to our current American parenting/pedagogic preoccupation with nurturing and praise, the Japanese begin with “gaman,” a philosophy that consciously teaches children to endure hardship — academic, emotional, physical — without complaint. At age 6, they walk to school alone. They pick up after themselves and each other. Responsibility is valued over comfort and these activities are perceived as developers of an inner strength consisting of moral muscle and resilience.

Meanwhile, their parents practice “mimamoru” — hands-off, non-interventionary observation. (Shall we say that today’s American parents will never be accused of that! And I’m not only talking about those raising first-graders! Heck, I see it at the secondary and college levels!)

In my case: I (and all the kids I knew) walked to school sans adult escort — 7 tenths of a mile (I Googled it.) from home — at age 6… My parents dropped me off for Little League try-outs, did not stick around, and later asked me, “So, how’d it go?” (See “miramoru”)… When I veered off the rails in middle school — both academically and behaviorally — they sent me to an out-of-state junior boarding school where I routinely cried myself to sleep due to homesickness during the first year. I also navigated, solo, the Boston subway and bus systems in order to get to the downtown Greyhound station for my ride home on vacations.  (I was 12.)  Although I never did manage to turn things around during those two years, I do not recall Mom or Dad busting on me about my poor grades. They seemed satisfied by the fact that i was being challenged. (And if that is truly what they sought, well, they got what they paid for!) I graduated near the bottom of my class and was a discipline problem throughout. That said, I did manage to earn marching rights at graduation. If I indeed had a crucible experience during my youth, that was it. Forty-five years later, when I was invited to give the commencement address at that same school, I began by saying, “My only regret is that my mother is not alive to see your invitation to make this speech. She would’ve really liked that.” As for me, I was proud to experience what felt like a redemptive return to the place that taught me in the dawn of my teens that… Life. Is. Hard. 

And once that truth is accepted, life — including the part where we ponder our mortality — becomes much easier.  

Loss & Prayer
As tough as the past 6 months have been, Stage 4 cancer is not the worst thing that has ever happened to me. That would be the loss of our beloved son, Harrison, four years ago to the waters of Sebago Lake. Ever since that day — one that included my own ambulance ride to Maine Med due to a case of unbearable grief — I have felt that I could handle anything that might come my way.  I begin each day with a prayer asking for the strength to honor the pledge I whispered into Harrison’s lifeless ear as he awaited cremation at the funeral home: “I pledge to spend the rest of my life striving to make you as proud to be my son as I have been to be your father.” Each morning I ask God to guide me in maintaining the resolve to “set the proper example for my family, my friends, my students, and even the complete strangers I may meet over the course of today.” And thanks to my one and only tattoo, I leave the house knowing that Harrison (AKA, “H-Bomb”) is always on my side.

Onward, Malcolm

PS: To bring it all back around to The Fun Stuff… one of the great traditions at Bowdoin is the signing of the Matriculation Book.  Each fall, every first-year student signs the book and shakes hands with the president of the college. This tradition began in 1841 and continues today. When I walked into our 50th Reunion Headquarters, I noticed that all of our signings had been blown up and posted on the wall.  Thinking I’d check one of them out, I sidled up to this one, only to find my name as the very first one listed.  Pretty cool. “Go U Bears!”