Malcolm GauldThe reason I have not posted much in recent months is because the bladder cancer with which I was diagnosed in 2022 has recently aggressively re-invaded my life. Just because I have not been posting does not mean that I haven’t been writing. In fact, I’ve been writing updates about my cancer experience and sending them to family and friends. So, I figured I’d present them here in serialized installments, adding new ones as the journey continues.
Update #1 – Ripping Off the Tape (11/20/24)
Greetings, Friends – Maybe it’s best to start by ripping off the proverbial tape: My bladder cancer, originally diagnosed in 2022, has returned in an aggressive manner and I am scheduled to have a cystectomy (removal of the bladder) on November 29 at Massachusetts General Hospital (MGH).
As you may know, I am a cancer two-timer, having had a radical prostatectomy in 2014 following my 2011 prostate cancer diagnosis. Thankfully, I have had Dr. Francis McGovern, one of the world’s great urologists – and an even better person – in my corner since 2011.
Since 2022, I have known that a cystectomy was a possible scenario. In the meantime, I have experienced enough tests, day surgeries, and treatments to… well… let’s just say that my car knows the way to MGH. As I have come to know about cancer, one set of scenarios tends to give way to another set, and so on. There are a few scenarios of what happens when one’s bladder is removed, each with their own up- and down-sides. My doctor will make the best determination in the midst of the surgery and I trust him to do so.
To be sure, I approach both this upcoming surgery and the recovery to follow with as much anxiety and fear as I have ever harbored. That said, I know:
- Doing nothing is not an option.
- I trust my doctor without reservation.
- I have much to live for. (Heck, the grandparent thing, by itself, is enough for me!
Furthermore, my last words to my dearly departed Harrison were a promise to “live the rest of my life trying to make you as proud to be my son as I have been to be your father.”
Finally, know that I am grateful for the countless family and friends who have supported me throughout my cancer journey. Talk about having great people in one’s life! #embarrassmentofriches
Onward, Malcolm
Update #2 – Thanks from My Fam (11/29/24) – From: Laura, Mahalia & Scout
Hi to everyone – We want to sincerely thank you for all the positive messages, prayers, love, and support that we have received. After a very long day, we are excited to share the following update. Malcolm went into the hospital at 5:30am this morning and was in his recovery room at 5:30pm. We met with his surgeon, Dr. Francis McGovern, who was incredibly thoughtful in his overview of the surgery. He shared he was able to remove both the bladder and surrounding tumors successfully.
While we still await pathology results for the lymph nodes and surrounding tissue, we are feeling encouraged about the path forward. We were happy to get a few minutes with Dad, and end the night with a hug and a kiss. Again, we are overwhelmed by the love and care from this group, and we will continue to share updates.
With deep gratitude, Laura, Mahalia & Scout
Update #3 – My Fam Checks In Again (12/3/24)
Hello again, Checking in with another brief (and positive!) update – that Malcolm continues to move forward… He has come through the surgery like a champ, and is ready for the next phase of recovery at home. He will be discharged tomorrow morning. We are still awaiting the pathology results but needless to say we have much to be grateful for. While Dad has not even reached for his phone, he’s been overwhelmed by the love and support he has received from all of you.
From the bottom of our hearts, thank you. Love, The Gauld Family
Update #4 – Walkin’ Bath (12/15)
Greetings, Family & Friends — So, after 5 days and nights, I checked out of MGH on 12/4 and returned Home… Sweet Home! Since then, each day has been a bit better than the last. The big adjustment has been that of understanding, implementing, and accepting the terms of what folks in the medical field call a “urinary diversion.” (Google Stoma and/or Urostomy. Hey, as a 50-year teacher, I learned a long time ago the pedagogic value of 3 words; Look. It. Up.) I’d give myself an A on the acceptance thing and maybe a B on the other two. And, yeah, I’m damn proud of that A! (Full Disclosure: When I learned that the Ostomy was a very likely outcome, my first Google search was “Death with Dignity.” Since then, I’ve moved on to a healthier psychological space.)
One of the biggest challenges has been the speed with which all of this has happened. Specifically, I walked out of my urologist’s Boston office on 9/25/24 with a clean bill of health — “See you in a few months” — and drove home feeling on top of the world. Then, a few days later, Doc’s office called to say, “Something didn’t look right in the urine sample you left”… “Showed cancer cells.”… “Let’s do another.” That led to another urine test, which, in turn, led to blood work, EKGs, MRIs, and a TURBT. Long story short: barely two months after that initial clean bill of health, I’m back at MGH having my bladder removed. As I have for nearly 15 years, I remain so thankful for the fastidious level of attention that Dr. Francis McGovern and his team apply to every test I ever take. (With a lesser doctor, I might well still be walking around thinking that the 9/25 clean bill of health was still in play and everything was fine.)
Although each day gets better, I’m not out of the woods. The pathology from the surgery came back with news that I will likely require some follow-up treatment involving some mix of radiation, chemo, and/or immunotherapy. Shortly after the Holidays, my oncologist and I will discuss the path forward. That said, truth be told, I have barely looked at the pathology report. My medical team at MGH has successively impressed upon me that my most important priority is to prepare myself for whatever comes next. So, I’m raising my stamina with 3+-mile walks, good nutrition, and lots of hydration and sleep. I’m also regaining the 20 pounds I lost during the surgery and recovery.
Finally, please know that I am deeply touched by the thoughtful communications and support so many of you have sent my way. As I quipped to Laura, “I feel a bit like Huck Finn and Tom Sawyer sneaking in to their own funerals.” Since I was 14, Hyde’s 5 Words have pretty much been my personal “True North” on my life’s journey. My, how that journey flows so much better with Family and Friends as guides! Many, many thanks. Love… Onward. – Malcolm
Update #5 – Of News and Goals (1/7/25)
Greetings, Family & Friends – Hope the Holidays were as great for you as they were for me. And mine came in stereo!
I also hope Mahalia and Paul are able to find someone who will say “no” to these two as their grandparents exhibited mixed results over the Holidays!
As a cancer two-timer, I have found that news tends to come at you in two forms: 1) bad; 2) not as complete as you might prefer. Laura and I met today for the first time with my oncologist at Mass General. Our hour together was both informative and confidence-inducing. It also left us feeling highly fortunate that Mass General has, once again, matched us with an outstanding doctor.
That noted, I confess that I should have known better than to go into the discussion hoping against hope that a “soup-to-nuts” treatment plan would be unveiled on a given day (1/6/25). I learned that we’re too early in the journey for such a plan. More importantly, I left our meeting thankful that our doctor is in charge instead of me! Here are three take-aways:
1. Doc senses that a dual regimen of chemo and immunotherapy is in my near future, but… he has ordered an extensive CT scan as a prerequisite before determining our treatment strategy.
2. He reminded us that my 11/29 surgery — radical cystectomy — has the qualifying adjective “radical” in its title for a reason. (i.e., It is truly a major surgery.) After observing that my recovery is speeding along in Week #5 at a rapid pace, he reminded us that full recovery — generally not attained for a good eight weeks or more — is a prerequisite for commencement of treatment.
3. At one point, I shared my short- and long-term goals. My most concrete short-term goal: See our third grandchild born this coming May. Turning to long-term: Live the very life I might have envisioned — if not fully appreciated — before bladder cancer ever crashed my personal party. After thanking me for my clarity, he noted that it was helpful to him to know what mattered most to me. He then echoed the mindset Dr. McGovern has consistently impressed upon me: “I don’t make predictions. I don’t offer odds. Cancer and guarantees don’t mix. What we do do is Never. Stop. Fighting.”
I’ve been around cancer long enough to know not to ask, “What are my chances?” I’ve learned to ask a slightly different question: “In your medical experience, have there been people who presented the circumstances I currently present who have, in fact, gone on to live out their short- and long-term goals?” Doc answered with a simple but emphatic “Yes.”
Not only is that not “bad” news, that’s very good news. It might not be as complete as I might prefer, but it’s enough to inspire me to do everything I can to complete the picture, especially when I’m joined by a medical team that never stops fighting.
I’ve also got family and friends who never stop caring. Thanks so much for reaching out and supporting Laura and me. Means more than you know. As I hashtagged in my first update: #embarrassmentofriches
Update #6 – Of Diagnoses, Action Plans, and Prayer (1/19/25)
Greetings, Family & Friends!
Diagnosis
Picking up where we left off a couple weeks back… My 1/8/25 full abdominal CT scan came back showing no cancers present. (Doc: “Classify these results as ‘encouraging’… then add 5 exclamation points.”) However… It is possible, perhaps likely, that microscopic cancers – undetectable on a CT scan – are present. Both Doc and I knew this going into the CT scan. He simply wanted to rule out any new cancers that might have spread to other organs before commencing with a treatment plan. So, what now?
Action Plan
The current plan is to begin – probably in mid-February – a regimen combining chemotherapy and immunotherapy that will occur over several weeks with breaks in between. At this point, Doc foresees a once-weekly affair that will likely be a rather potent combination. (I digress: While I have appreciated the encouraging support from some who have assured me that today’s chemo is much milder than that of past generations, I have learned to not allow my mindset to stray far from two truths I have internalized: 1) Cancer is like snowflakes – no two are the same. 2) The same is true of treatments.) There will also likely be a radiation component on the back end…. That’s what I know at this point. As I write, seven weeks have passed since my radical cystectomy surgery was conducted. Meanwhile, I continue to prepare myself — diet, walking, rest, etc. — for whatever is to come next.
Prayer
Having now spent 3 months staring my own mortality directly in the face, I find myself on an ever-present look-out for any conceivable edge I might secure. This, in turn, has led me to consider options I might previously have neither recognized nor fully appreciated. At the top of this list? Probably God and prayer.
During the dark days of November when my prognosis was looking particularly grim, I happened to attend the baptism of my granddaughter (see photo) at St. Paul’s Episcopal Church in Chestnut Hill, PA. Truth be told, I was half paying attention to the proceedings when a snippet of the rector’s final prayer of the ceremony caught my attention:
Do not pray for tasks equal to your powers; pray for powers equal to your tasks.
For the next couple of days, I could not stop noodling that line in my head. So, I emailed the rector and asked if he would send me the entire prayer, which he did along with an explanation of its origins.* Been whispering variations of it to myself ever since.
Up until now, God, religion, and me have had a spotty relationship. For starters, as a baby, I was christened at the Unitarian Universalist (UU) Society in Newton, MA. (My Mom was raised Unitarian and wanted all three of her children to be christened by her minister.) A quick Google search of UUs will show a denomination that can be hard to define and one that has been the subject of a number of good-natured jokes. For example, UUs are basically good people known to face all questions with an open mouth and who, for the most part, try to live by the 10 “Suggestions.” (It would not be stretching it to say that Mom wore those characterizations as a badge of honor.)
In our childhood home, my sisters and I were expected to attend Sunday School through sixth grade, all in Protestant churches that tended to be soft spoken about their denomination. (We never lived in a town with a Unitarian church.) Then, as a junior boarding school student, I spent two years (age 12-14) donning gray suit and hand-polished shoes each and every Sunday for the 1-mile walk to-and-from the W. Newton (MA) Church of Christ. (On the way, walking right by the aforementioned UU church of my christening.) Given that I was too old for Sunday School but too young for what I took to be “grown-up worship,” I would zone out during the seemingly interminable services, yearning for the day when I might be released from the obligation.
Since I began high school, I pretty much stopped Sunday church-going and prayer has not been a big part of my life… until now. I submit that three factors have contributed to this very recent change:
- The sheer mind-blowing number of people who have told me that they have, since my diagnosis, prayed for me as individuals or in prayer circles. This has fueled a deep sense of gratitude and humility.
- I know it has something to do with the pledge I made to Harrison (RIP), our son, as we paid our last respects to him just before he was cremated in 2022: “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.” During some of the downer days I’ve had during the past few months, prayer has helped to remind me and somebody else – like God – of my commitment to our son.
- As I approach 40 years of sobriety this May, I feel a heightened appreciation for the Serenity Prayer. It helped me way back then and it may well be the best descriptor of what I’m trying to do right now: change what I can… accept what I can’t… be smart enough to distinguish between the two.
Thanks so much for your love, encouragement, and support. #backatchya Onward, Malcolm
* Phillips Brooks (1835-1893) was a nationally prominent Episcopal Clergyman who served in Boston and Philadelphia. 2 Fun Facts: 1) He wrote the lyrics to “O, Little Town of Bethlehem.” 2) He is the namesake for the Brooks School in N. Andover, MA)
Update #7 – Greetings! — On Monday (2/10/25)… Wait, that’s today?!?… the follow-up treatment part of the journey begins. This will be a once-weekly — actually, Monday-Monday-Monday Off… Monday-Monday-Monday Off… and so on — regimen involving chemo and immunotherapy stages occurring over the next three months. I’ll be doing this in Portsmouth, NH — the closest MGH-affiliated hospital to me — thereby saving me from that dreaded Boston traffic.
Although I have had two cancers over the last 15 years, I have somehow managed to avoid any and all chemotherapy. I have been briefed on a range of reactions I might have to it, but only time will tell. My mood is hopeful, anxious, and yeah, fearful. I gather that I’ll continue working — at least some of the time — but I have also been told to limit substantively my direct interactions with students in the interest of my own immunity.
I am pleased to report that my doctors uniformly voice superlatives re: my recovery — vital signs, weight, energy, blood work, disposition — as I hit the 10-weeks-post-surgery marker. Not only do I feel great, this experience has brought a whole new meaning to the notion of “one day at a time.” Every conversation, walk, cup of coffee, Celtics game, newspaper (esp. our family’s daily competition over the NY Times “Connections” game), good nights’ sleep, and song is received with full appreciative attention.
The supportive messages — not to mention books, food, chocolates, and even ice cream (!) packed in dry ice — I have received from so many of you mean more than you know. For some reason, some of my former students have gotten into a t-shirt jag. This one came from a class of ’90 alum who volunteers with Brooklyn Lacrosse. (The frozen pizza is an inside joke between the two of us.)
This one’s from another late 80s alum (and current colleague) who correctly sensed that Warren Zevon’s infamous cry for help was somehow fitting to my current circumstances.
This next one not only requires explanation, you may need to be a Hyde person to “get” it. Back in the 80s, before Hyde adopted the E-E-M-O (Excellence-Effort-Motions-Off-Track) evaluative scale for personal growth, we used a 1-5 scale with 1 being “Poor” and 5 being “Superlative.” Once in the late 80s when we were doing such an evaluation, a group of seniors calmly announced that the 1-5 model no longer applied to them. When asked to explain, they informed us that they had transcended our simplistic “suitable-for-beginners” standards only to gain entry into a realm of their own founding… “Level 6 – A Step Beyond.” We all had a good laugh over that and “Level 6” became a Hyde cultural “thing.” Then, nearly 40 years later, I find myself having a phone conversation about my cancer diagnosis with one of the actual Level 6 founders. At one point, he said, “I have decided to call an emergency meeting of fellow Level 6’ers to propose that you have met the qualifications for special membership.” A week or so later, this t-shirt arrived. (I’m afraid to ask, but does this make me a temporary or permanent member?)
Just before I went into surgery my fellow Maine lax bros dedicated their final outdoor pick-up game of the year to me. (I’m the guy in the middle in all-black and a Hyde hat.)
And over MLK Weekend, my beloved geezer lacrosse team — The Gray Eagles — won the first ever 70-and-over World Lacrosse Championship at the Florida Lacrosse Classic. Although my recovery prevented my participation, they sent me a signed game ball.
All I can say is that I am deeply touched.
Finally, my lowest point of this experience occurred in early November when my urologist shared some particularly dark test results. Specifically, he prepared me for the distinct possibility that my cancer had advanced to a point of inoperability. Never have I looked as closely at my own mortality… or… had it look right back at me just as closely. One thing the experience triggered was a hard look at my life’s work as a teacher and educator. I wondered, If it all ended next month — which, for the first time in my life, was not a far-fetched notion — what would I have to show for it? This led me to start noodling my thoughts, opinions, and words in the direction of the steps we need to take as a country in order to have the schools all of us want. After jotting and recording ideas, I wound up with the attached blog post entitled My Pedagogic Creed 2.0 – With Apologies to John Dewey. You could also call it: 10 Steps to the Schools We Want. Full Disclosure/Warning: It’s not light reading — 2500 words… or in today’s parlance: 13 minutes — but it is the best marriage of head and heart that I can up with at the moment. Here’s the link:
Thanks again for your friendship, love, and support. #backatchya Onward, Malcolm
Update #8 – Keep the Faith… Hold the Optimism
“You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be.” – James Stockdale
Among the many supportive, helpful, and inspirational emails/notes/texts/calls I have received from so many of you, a recent one from a friend struck a chord that continues to resonate. In effect, he observed: The point you made in your last email about balancing resolve and realism made me think of the Stockdale Paradox.… Never having heard the term, a quick Google search shows that it is referenced in much of the work of Jim Collins (author of Good to Great – 2001) who is credited with coining the term.
Now, you might remember Mr. Stockdale as a guy who flubbed a 1992 TV presidential debate — His opening line: “Who am I? Why am I here?” — as Ross Perot’s 3rd party running mate. This hung a label on him as somewhat of a national joke which unfortunately — not to mention grossly unfairly… overshadowed the national heroism Stockdale most definitely deserved after serving 8 brutal, tortuous years in Vietnam’s infamous “Hanoi Hilton” where he not only suffered regular beatings and two broken legs, but he actuaily slit his own scalp with a razor and beat his own face with a stool so his captors would not be able to utilize video footage of him for propaganda purposes. (Comic/Talk Show Host Dennis Miller referred to Stockdale as “The first guy in and the last guy out of Vietnam.”)
After reading about the Stockdale Paradox, I told my friend that it comes pretty close to putting into words what I have been thinking the past few months. I have come to believe that the best way to address my circumstances lies in balancing this imaginary yin & yang see-saw featuring resolve/faith on one side and acceptance/realism on the other. Too much of one without the other plays out that playgound prank where the kid on the other end of the teeter-totter jumps off suddenly and fakes you into slamming into the ground.
In an interview with Collins on the Stanford campus where they both taught, Stockdale explained that while imprisoned in Vietnam, “I never lost faith in the end of the story. I never doubted that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which, in retrospect, I would not trade.”
Then during one point in their interview, Collins asked, “Who didn’t make it out?” Stockdale responded, “Oh, that’s easy, the optimists.” Sensing Collins’ confusion, Stockdale explained, “The optimists. Oh, they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.”
So, I’m keeping the faith while holding the optimism at abeyance. Two other great suggestions I’ve gotten — both from women I deeply respect who have faced their cancers with levels of courage I try to emulate — are helping me do that:
1) “I try to regard my chemo/immunotherapyradiation regimens as a work project. There are due dates I need to meet, I live by the results, and there may be future projects down the road.”
2) The other said, “I view my cancer treatments as my job. Gotta get up and go to work. Gotta pick my fun spots in between.”
Words to live by for… anyone up against tough times.
Concluding with some specifics: I’m three chemo sessions (5 hours each) down and five more to go… I had a port installed in my upper chest for easy access for blood work, chemo, immunotherapy, CTs with contrast, etc. I mention it here — and highly recommend it for reasons I’d be happy to share with anyone privately — on the chance that you or someone you love is embarking on a similar “work project.”… The current plan is to transition to immunotherapy in late April or early May… So far, the nausea and fatigue have not been as bad as expected, but I’m told that both can intensify due to chemo’s tendency to carry a cumulative impact. It’s possible that my updates will decrease in both frequency and detail as we proceed… Still have my hair, but, yeah, it’s not like anyone can tell!… Kudos to all my MGH caregivers at their Dover and Portmouth (NH) branches. As I told my oncologist there, “I have yet to meet a person at MGH with a bad attitude.” And beyond contributing pleasantness to an otherwise dreadful process, this awesome benefit also helps me keep my own attitudes in check.
Love & Onward, Malcolm
Update #9: The Chemo Thing & The Availability Heuristic
Greetings! Although my experience with cancer approaches the 15-year mark, I somehow escaped any relationship with chemo until now. Before Session #1 on 2/10, I was filled with dread. Nobody likes nausea, but I detest it! That said, thus far, the treatments have been relatively tolerable and the revolving door of awesome chaffeurs I have had on my trips to-and-from Portsmouth — Laura, sisters, sisters-in-law — has truly made me feel loved. And that REALLY helps!
Chemo, like any cancer it might help prevent or eradicate, tends to be misunderstood, often deeply so. I have observed that patients (including me) and their loved ones tend to get stuck on a cognitive roadblock known as the availability heuristic. Sometimes actually called the availability bias, the availability heuristic is a mindset where people might judge the likelihood of events or outcomes based on how easily examples or instances some to mind — e.g., an uncle’s inspiring cancer recovery or a cousin’s all-too-sudden slide to death — as opposed to objective data. In cancer’s case, the availability heuristic is a mental shortcut that, if not balanced by informed objectivity, can lead to misjudgments of risk, probability, and recovery measures. Speaking personally, my cancer experience has taught me that my opinions on cancer were overly based on and largely limited to my interactions with family members or loved ones who might have had cancer. That both helped and held me back. It has helped more since I have gained more objectivity about my own unique circumstances. Anyway…
If you know anything about chemo, it might mean something to you to know that I’m doing the once-weekly gemzar/cisplatin protocol of 2 chemos-in-one. Each session is a 5-hour I.V. process beginning with 2 hours of hydration & anti-nausea medication followed by 3 hours of the two chemos, one right after the other. My planned schedule follows a rhythm of Monday/Monday/Monday-Off until 8 treatments are completed.
I’m now five treatments down and three to go. There is indeed a cumulative effect — esp. re: fatigue and nausea — that increases as the treatments proceed. In my case, there is both good and plans-changing news to report:
Good News
– I have yet to experience issues such as loss of taste, appetite, or hair. – The nausea/fatigue following each session, although trying, has been more manageable that I had expected.- I’m continuing to walk 3-4 miles per day and bicycle around town. Last week I even got to stop by our men’s and women’s lacrosse practices for a pop-up guest-coaching clinic on proper thowing and catching fundamentals. (No word yet from Coach Bob Felt on whether they plan to ask me back!)
Plans-Changing News:
– I have acquired a superficial blood clot — another common chemo side-effect — that will keep me on blood thinners for a few months.- Following Session #4, my white blood cell (WBC) count descended into the danger zone, thereby compromising my immune system. So, I’ve been avoiding crowds and wearing a mask in stores or other indoor crowded areas. – Due to the lower WBC count, my oncologist postponed last week’s scheduled session (#5) and did so again this Monday. As a remedy, this week I was prescribed daily shots designed to boost my WBCs. The plan was to do Session #5 at the end of this week. And given that the shots did indeed spike my WBC count, I was able to do #5. More shots are on the docket for next week with plans to do Session #6 next Friday.
In short, re: chemo, the doctor maps a course — and I am blessed with superlative doctors — but after a while, the body’s response will necessitate revisions to and deviations from that plan. When that happens, the patient will do well to realize two things: 1) Cancer cares absolutely nothing about human plans; 2) You gotta roll with the punches.
That said, anytime such a change enters the picture, it’s impossible (for me, anyway) not to obsess about just how wrong things must be going for the doc to change course. (I would, however, pat myself on the back for my improvements in this regard.) That’s when fellow cancer patients are crucial. Case in point: Since my chemo postponement was decreed, I’ve received counsel from chemo veterans, the vast majority of which also experienced postponements. I’ve also gotten lots of help from an awesome on-line bladder cancer support group — as an aside, its participants restore my faith in what social media could be as a positive force for human betterment — who have shared their own stories re: postponement. Come to think of it, when fellow patients gather and share, both objective data and availability “heuristicky” (pretty sure I just invented a word) info is tossed around. Then, thankfully, our doctors help us sort it all out.
Ending with doctors, as I headed into chemo a couple months ago, my oncologist said, “I can only promise one thing: We. Never. Quit.” And that’s the most important plan of all.
Love & Onward, Malcolm
