Brain: Part 2

There was always going to be a part 2, even if every thought and action for 3 years was aligned against that inevitability being a possibility. All of us, including him, knew the statistics with a glio-bastard-oma, but life is still to be found in the shadow of death, and I’m at peace knowing that, for the most part, we lived. What I want to do is document the whole process, in order to put something into the information ocean that might be a bit useful for someone else going through a glioblastoma diagnosis.

The Beginning:

Beginning in February 2021, my Dad was officially diagnosed. He was complaining of a headache he attributed to falling while snowboarding the week before, and was noticeably worse at texting, speaking, and installing electrical wiring throughout the house (its a small miracle nothing too shocking came about). After his speech was seriously mumbled, my family was sufficiently worried enough that they decided to bring him into the ER, where a brain scan revealed a tumor the size of a tangerine in his right prefrontal lobe. Tests confirmed that the tumor was un-methylated (about a 2 in 3 chance) meaning some drugs wouldn’t be as effective against it.

An emergency craniotomy followed, but follow-up scans revealed the first surgeon left large amounts of tumor in place. After meeting with another surgeon who promised to remove more, my dad underwent another craniotomy days after his 62nd birthday. This time, the surgeon was able to remove much more, resulting in virtually no tumor being detected. A huge win, and something that not all glioblastoma patients are so lucky enough to achieve. Still, we all had the knowledge that just a single cancer cell could re-grow the entire tumor, most likely elsewhere in the brain that is less operable.

After a recovery period following back-to-back brain surgeries, he began radiation treatment at one of the premier cancer centers in the country. The radiation was designed to zap any tumor cells still present in the original area, preventing the single malignant cell from forming a re-growth. Throughout this period, my Dad absolutely retained his personality, never for a second losing his sense of humor at doctor’s appointments, with his many friends who came to visit, and with us. I think that part of him wasn’t in his brain, at least not totally. At his core, he was a person who rebelled against “roles,” or the part he was expected to play in social situations. He would make jokes constantly as if to uncover a deeper truth behind the defining Human experience of falling ill and changing for the worse. Or maybe it was purely for the benefit of us around him, but I think it was a little bit of both.

The Middle:

Thankfully, my Dad had began working for a local company with great benefits, and had continued to pay into long-term disability insurance after seriously considering cancelling. So what could have been a crippling situation financially was avoided. After the craniotomies and radiation, he was weaker and required more naps, but overall was still able to walk around the house, eat prodigious amounts of food, and complain about the puppy the family we (insanely?) adopted to help with his recovery process. The dog had the effect of certainly bringing life into the house, but resulted in my Dad doing the lion’s share of the care and exercise while I and the rest of the family was at work.

The summer and fall of 2021 passed quickly–my Dad was alert most of the time, and was almost back to his former self. Physically, Dad was able to ride his bike, do house/yardwork, and travel, and even began returning to work on a part time basis by the end of the year. There were no signs of the cancer returning, he was doing well, and we were happy if apprehensive about what the future might hold with its wicked probabilities. At any moment, the Dad we lost and rediscovered, could slip away again, creating a perpetual state of anxiety, denial, and often macabre humor on my Dad’s part.

During that half of 2021 and the year following, we were engaged in a combined arms operation designed to limit the resurgence and expansion of any renewed tumor growth. Knowing that a single malignant glial cell could cause the tumor to return, we tried practically everything to prevent this eventuality. I say “combined arms” because, like the military term, our offensive consisting of multiple, mutually supporting areas of diet, naturopathy (homeopathy), and state of the art immunotherapy which I will expand below:

Diet

Books such as Grain Brain: Eat to Beat Disease, and Blue Zones Kitchen were always scattered around our kitchen at the time. Each approached the subject of disease in a slightly different way, but largely agreed on several key areas:

1. Cutting out all added and refined sugars that might cause a blood glucose spike. The idea being this would cause a tumor cell to gobble up glucose and go through horrifically fast periods of mitosis that could outpace radiation, immunotherapy, and other counter efforts.

2. Adopting a gluten free diet, the idea being that gluten could result in a similar spiking of blood sugar, but admittedly this connection is less clear in my mind and I will update if any clarifying information comes my way on this (thanks mom!)

3. Cutting out alcohol, as (what was new to me) it is a known carcinogen! Who knew right? I’d have thought someone would have told me this at some point! https://www.cancer.gov/about-cancer/causes-prevention/risk/alcohol/alcohol-fact-sheet

4. Maximizing anti-cancer compounds naturally occurring in foods, namely berries, cruciferous vegetables, and garlic that are all shown to be highly anti-carcinogens (So if I drink a beer and chase it with a handful of blueberries, I should be good right?)

Naturopathy:

Naturopathy, or homeopathy uses dietary or topical supplements that might otherwise be ignored or derided by conventional medicine. As I see it, the field runs the gambit from science-based testing to determine nutrient deficiency (which they always conveniently also happen to sell) to borderline hilarious “testing” involving finger snapping, thigh slapping, astral projections about what your body is “asking” for. The placebo effect is a powerful one however, and many folks who engage in these treatments actually get better, more of a testament to the power of the mind-body connection than any physical substances ingested in my opinion.

Nevertheless, what might seem ludicrous under normal conditions to most people takes on a different light under more desperate conditions. After all, who really knows 100% of what’s going on inside our bodies, especially with a sword of Damocles suspended over one’s head? My Dad began seeing a local naturopath who prescribed treatments which thankfully appeared to pass the BS test. He was provided with a gargantuan amount of vitamins to eat each day, the majority of which consisted of Reshi mushrooms which also have demonstrated anti-cancer properties. Along with other vitamins, his bloodwork was being closely monitored by the naturopath for such things as white blood cell count, platelet counts, and red blood cell oxygen uptake. At the practical level, this created a regimen of dozens of pills each day at each meal, along with his conventional medications. To help him out, we would individually open the mushroom capsules and pour the contents into a cup of hot water, making a sort of earthy (and quite smelly) tea to a dozen or so pills he would have to swallow.

Immunotherapy:

Today is an exciting time for the science of immunotherapy, or the manipulation of the body’s own immune system to fight diseases. Dad joined a clinical trial designed to create a “most wanted” poster of a resurgent tumor cell for his immune system, as the body naturally fails to recognize cancer cells as an incipient foe to be attacked on sight. By obtaining a sample of his initial tumor cell, creating an injectable vaccine personalized from each, and reintroducing it into the body, the immune system will ideally be alerted to the threat and be forever on the lookout for regrowth. Combined with radiation, surgery, diet, and naturopathy explained above, this was truly a situation of throwing truckloads of spaghetti at the wall to see what sticks (https://www.economist.com/science-and-technology/2025/01/01/cancer-vaccines-are-showing-promise-at-last).

The End

At stick it did, for a lot longer than usual at least. Half of all patients with glioblastoma don’t see the 14 month mark from initial diagnosis, and at least half of those survivors don’t make it to 28 months, and so on. My dad fought for almost 31 hard, joyful, heartbreaking, beautiful, excruciating months and I’m so so proud of him. If I know him, I know he was fighting for my mom, sister, and I. To continue being the husband, father, and future grandfather we still needed him to be. To prevent the cruel theft of someone who saw the world differently than anyone else I know and shared it with others as a gift more precious than I can explain.

In the summer of 2022, a monthly scan revealed the tumor had returned. Small, almost undetectable. Almost. But there it was, a tiny speck of white on a Rorschach test containing 63 years of memories, love, and laughter. Just as an atomic mushroom cloud springs from a tiny amount of uranium, so too did the glioblastoma begin its counterattack.

Targeted radiation beams on the spot followed his diagnosis, which Dad tolerated pretty well, his only symptoms being fatigue and a localized sunburn. However, this had little to no result. As 2022 gave way to 2023, we saw small changes throughout the house to adapt to my Dad’s slow loss of functions. First it was a cane against the door, then a walker for stability, then a platform under his left slipper to make dragging his right food behind easier.

Yet there too was life in this year. My Dad got to meet the love of my life, we had endless family and friends come through to say hi (and I expect, farewell), and the caregiver routine commenced for my mother, sister, and I. The Hoya Lift and Stair Chair additions were memorable adds, along with my new appreciation for the battle between wheelchairs and small pebbles and steps on the way to medical appointments or therapies. As the summer came and began to depart, so too did my Dad’s ability to eat, communicate, and sit up on his own. For the final months, we were in charge of dressing, feeding, washing, comforting, and moving him around the house.

It is my hope that at this point my Dad was unaware of most of what was going on around him–I wish he could not see how this vibrant, energetic, magnificent soul was being encased in his own body. But I suspect his was more aware than we could realize, and was probably struggling internally with anger, fear, sadness, and anxiety that he was unable to express physically and emotionally. I think above all he resented being a burden to us, even though years ago he would joke about having my sister and I take care of him in his advanced age (to which I would reply that we would put him in a retirement home long before THAT!).

We decided to engage hospice care services at the end of August, where they would come and consult for ways for us to make him more comfortable as he slipped further and further away. By that point, he was largely unable to leave bed, and was sleeping a large amount of the day. I found this (https://www.brainhospice.org/brain-cancer-hospice-symptom-timeline) resource that describes the different stages of the dying process, and throughout the summer I was vigilantly looking for the signs that might give an idea of how close to the end he was. I don’t think I would recommend this, as there were serious ups and downs that would severely affect my mood and mental state.

Finally, one day in September, the hospice nurse finished her inspection and noticed mottled skin around my Dad’s arms. This, she said, was the hint that the end was only about three days away. I was astounded by the empathy that she and the other hospice personnel showed my family and I through the final weeks–I wondered how there could possibly be any empathy or emotions left to express when faced with death every day? Nevertheless, the hospice nurse cried with us as we prepared for the dreaded day. A week or so before, he quietly whispered to his in-home helper that he was seeing angels flying in the corners of his vision as the dying process began.

On September 15th, 2023, my Dad was surrounded his family as he passed on. We sang hymns and told stories as his breathing became increasingly labored between morphine doses, Led Zeppelin’s Stairway to Heaven being one of the final songs that I will forever associate with this moment.

At his funeral, I wrote his eulogy, which I think encapsulates the incredible person my Dad was to me and everyone who knew him:

The amount of people here today speaks to how incredible my Dad was at being a friend, colleague, brother, son, husband, and father. If you knew him, I think you would agree he always saw the world just a bit differently than everyone else, almost as if he knew something we didn’t about the secret to a happy life.

He manifested this perspective in a thousand little interactions he had with us as children that Hannah and I will no doubt pass on. To get us upstairs and ready for bed each night, he challenged us to a round of hide-and-go-seek upstairs and then we raced competitively to see who could get their pajamas on and teeth brushed the fastest. He was an absolute genius.

Dad had the ability to rock New Balances, tall white tube socks, and thirty-year-old Harvard T-Shirts while still somehow being cool. No doubt our pre-school remembers the Ford pickup that would arrive every morning, blaring Pink Floyd with two small children clambering out. Childhood friends of ours might remember him as the boat driver on Chebacco Lake that would whip us around in a tube, or rather we would remember if we didn’t all get so concussed. Dad’s coolness translated into a sort of pushing-the-limits energy, causing other parents to warn “Don’t Follow Scott” as the ultimate rule when snowboarding, mountain biking, or hiking. We always followed him anyway, as he led us down double-black diamond ski runs with more ice, rocks, and New Yorkers than actual snow.

Despite all this, he was a man at profoundly at peace with the world. His presence could instantly calm; a bad day could be reversed with his smile, and a goofy joke was always on stand-by. Our Dad had an incredible talent for sitting back, watching the world, and finding the humor in everything. He’d primarily demonstrate this by adding a joke in just the right point in a conversation to reduce a whole room to tears of laughter, none more so than my Mom. He just wanted people to feel good, to be a bright spot in the day of those he treasured most. He was a giver.

When my sister and I were small, and indeed there was such a time I was small, he would read to us every night. One of our favorites was “The Giving Tree” by Shel Silverstein, a story I used to think was a cautionary tale of selfishness. But I now know he was really teaching to me the true meaning of fatherhood. For those unfamiliar, there once was a Tree who loved a little Boy. The Boy plays with the Tree every day: running, climbing, swinging, pretending. The Boy loved the Tree very much and the Tree was happy.

But the Boy stays away for a long time and the Tree was sad. When the Boy comes back, the Tree shakes with joy and says “Come Boy, climb up my trunk and swing from my branches and be happy once again.” I’m so happy that I did, and we were for over two years. At the end, the Boy is old, and the Tree no longer resembles its former self, having given everything to the Boy. It apologizes for having nothing left, to be unable to play in the forest, but the Boy realizes what a gift it is to simply be in its presence, to sit with, to rest, and enjoy its company until the end.

One of my Dad’s favorite shows we watched together during his cancer treatments was “The Good Place,” a show chronicling the personal growth of a group of truly reprehensible characters who have died, entered purgatory, and are trying to make amends to enter Heaven. During its last episode, a character is preparing “to go” to the Good Place, even as it means leaving their friends behind.

He asks his distraught friend to picture a wave in the ocean. You can touch it, measure it, and admire how the sunlight passes through. But the wave crashes on the shore and is gone. But the water is still there. The wave was just a different way for the water to be for a while. The wave returns to the ocean, where it came from, and where it is supposed to be.

So my Dad is still here, all around and within us. In our sunset skies, freshly fallen snows, and our memories. To paraphrase Hemingway, someone is not gone from us while they live on in the stories we tell each other. So let us talk about the memories of my Dad so that amazing one-of-a-kind man will remain alive in our hearts. And when we look up and notice the beauty in the world that surrounds us, the beauty he saw in it, let us give thanks for having gotten the chance to know him, that magnificent wave, my Dad.