My Chemotherapy regimen ended with the treatment on February 14. At that time I had a CT scan that showed my liver tumor had shrunk to 1cm. After a team of doctors met and discussed my case, the oncology doctors felt strongly that I had a better than 90% chance of destroying the tumor with Stereotactic Body Radiation Therapy (SBRT), and I consented to the plan. On February 28, we stopped the FOLFIRI chemotherapy treatments because the drugs Irinotecan and 5-Fluororacil will affect the course of radiation, making it more intense and possibly more toxic than necessary. My oncologist let me know that chemotherapy was over, as far as we can know. It was a relief to hear that we are done with it, as chemotherapy was rough, and though I always keep a positive attitude with my game face on, it was wearing me down.
My first appointment for radiation treatment was in a CT scanner, in order to precisely locate my tumor and put position markers on the outside of my body to assist in locating it for each treatment. I was positioned on the table on top of a sort of beanbag pad that two people, one on each side, worked into position at the sides of my body, and once in position they turned on a vacuum pump that extracted the air from the pad which made it fairly solid. I thought I might feel a little claustrophobic but once solidified, it was kind of comforting. I felt like I was on a papoose board, held lovingly in place and perfectly safe to be irradiated. I suppose it felt like a ThunderShirt for cancer patients.
Next they tried to attach a device over my abdomen that looked for all intents and purposes like an olive oil extraction system. A bar was attached to the table across my tummy and had at its center a threaded hole through which a bolt attached to a square pad could be cinched down onto my abdomen, to keep my diaphragm from moving up and down. Using my diaphragm to breathe would move my liver and thus the tumor, so this medieval sort of torture device could fix me in place and keep the radiation focused on the target. Thankfully the whole thing didn’t work because it put so much pressure on my hepatic artery infusion pump, pressing the skin of my belly hard against the metal pump implanted there. It was painful and after my complaints, we all agreed that the low-tech approach of me holding my breath for 20-30 seconds at a time would be a lot better.
So they coached me over a speaker when to breathe all my air out and hold my breath. It is pretty difficult to not feel like you are suffocating, and it’s a lot harder to hold your breath when you don’t have lungs full of air. Next, with half a beer bottle’s worth of iodine contrast injected into my port, they fired up a bunch of green lasers that made lines on my abdomen, then they located my tumor using the CT scanner and had me repeatedly hold my breath. Once the tumor was precisely located, the two technicians drew all over my abdomen with black and green markers, and stuck a bunch of hypoallergenic stickers over the marks to fix them in place for a couple weeks. These would be used with the SBRT machine to target the tumor. After that I was released so that the team could spend some time planning the dosage and number of treatments needed to irradiate the tumor and destroy its DNA, killing it utterly and leaving a ball of scar tissue in my liver for some years to come. And hopefully, for many years to come.
I was scheduled to return on March 21-24 for four straight days of radiation treatments at 8:15am each day. Waiting for these treatments to happen was a little anxiety-producing. As bad as chemotherapy can be, at least it makes you feel somewhat safe that the cancer isn’t spreading into your lungs and brain. When you don’t have chemotherapy it’s a bit like jumping out of an airplane with no parachute: you’re out there flapping in the breeze hoping your feeble efforts are slowing down the timetable of your inevitable impact with the ground. It is honestly a bit scary to be without it. What do I eat? If I don’t have any sugar or food at all, can I prevent the cancer from growing and spreading?
Luckily my digestion system solved some of those issues for me. Since my final chemotherapy treatment on February 14, my stomach has felt unsettled at best, nauseated most of the time, and painfully crampy at others. My oncology team tried a whole range of treatments and drugs to bring me some comfort, an oncology nutritionist interviewed me about diet and medications, and after some brainstorming I started a course of 1000mg of sucralfate in a 10ml suspension. It seemed to help a small amount, but nausea and cramping was getting worse and not better. We started a course of 10mg dicyclomine four times a day, and in less than a day the cramping was gone and much of the nausea too, except right after taking the dicyclomine, which made me quite nauseous for about 30-60 minutes every time I took the drug. But the next 3 hours were a relief.
We also wanted to check to make sure my clostridium difficile colonization from December 2021 was cleared, as well as an escheteria coli infection I had around the same time. We discussed also re-checking for the giardia infection I had at the same time, and also before the cancer, which was treated twice with a course of tinidazole and hopefully eliminated. So I had to provide a stool sample, which was pretty easy since I had a couple leftover sterile sample containers lying around. I mean, I say “easy” but you try unloading a half colon of your morning poop into a shot glass without making a mess of it. I didn’t have a “hat” collection device on hand so I had to improvise… enough said about that. <shudder>.
I went into the lab the next morning and had to wait to be called back to give my sample to the lab techs. In the meantime, on the first level there is often a piano player that comes in and plays show tunes and instrumental standards. It’s often sort of background music and in like 18 months of doing this, you would never know from the looks of all the cancer patients that anything moved them, EXCEPT this time he played “Easy” by the Commodores and a miraculous thing happened: many cancer patients of every conceivable age were tapping feet and mouthing the words, “easy like Sunday morning…” and it seemed like a peacefulness settled on the place. This was such a beautiful moment that I went ahead and added the song to my chemotherapy playlist, and this little tiny memory will be a treasure for me.
I got back my test results a couple days later, no c. diff, no e. coli. I haven’t seen test results for the giardia, but let’s hope all is well there. I continued taking the dicyclomine until March 18, when I was feeling so much better that the drug was making me nauseous even when I wasn’t having cramps anymore. My oncology team followed up with me regularly to make sure I was feeling okay.
Soon enough, March 21 arrived. It was 5 weeks since my last FOLFIRI and 3 weeks since my HAI pump’s Floxuridine infusions, and I was feeling pretty good. I arrived with my wife at 7:45am and went down to the basement floor, checked in, and before too long one of the technicians came and led me to the radiation suite. We stopped in a station full of monitors containing CT images of my chest and tumor, and I got to meet the team of four or so people administering the radiation therapy. I was led into a room with a fancy space-age radiation unit, where I had to take off my shirt and reveal my fancy black and green marks. The mold of my body was already down on the table, covered with a sheet, and I was helped into it so that I was lying down, and the technicians used the sheet to lift me and scoot me where I was more perfectly aligned with the marks on the body mold. Then the table moved so that the green laser lines aligned with the marks on my abdomen, and we got started. They put a little screen in front of my face that showed my breathing as a rising and falling white line. At the exhale point where my lungs would be almost completely empty, was a small green range where I had to hold my breath, such that the white line stayed in the green range. If, at any time, I had to breathe and the white line leaves the green range, the radiation shuts off. This was comforting as it meant I wouldn’t be responsible for zorching too much of my liver if I had to breathe.
I asked them to let me know a bit ahead of time when I needed to hold my breath. I was going to try an experiment in breath holding, to get easily past the 20 seconds or so that I needed. When I was a kid living in Japan, we went during the summers to Shimoda beach and I got to watch these female funado divers go down with a basket and harvest a special regional wakame seaweed, shellfish, oysters for pearls, all by holding their breath. They were down there an incredible long time, and they seemed to be breathing really fast at first before going under, then using weights to get down to the bed of the harbor. This swimming, diving, and breath-holding made an incredible impression on me as an 9-year-old kid, though I was talking to my Mom about it this weekend and she always thought what made an impression on me was that the divers were topless. For the rest of my life, whenever I was in a pool I focused on being able to hold my breath for long periods of time, trying to swim all the way across the pool underwater, and always counting how long I could hold my breath.
So I decided I was going to use everything I learned to hold my breath for as long as possible. I got into a meditative state and focused on breathing a bit faster than normal, visualizing my tissues being filled with oxygen, so that when the voice on the speaker said to hold my breath, I would exhale until in the green zone and hold my breath. It was very easy to reach a count of 20, 30, or 40 on the first day. They complimented me at the end on how well I could hold my breath, that their physicist hadn’t seen anything quite like it, and it made the radiation treatments go faster since we could cover the exposures in a shorter period of time.
I took the first day of treatment off work because I didn’t know what to expect of my body after the treatment. I don’t know if it was my weird breathing, but I felt pretty dizzy after the treatment and was glad my wife drove me there and back. I had been entertaining a sort of fantasy that I could just drive myself there and back, and that I was some kind of radiation-absorbing Übermensch, but honestly I felt a little scared to do it all by myself. After the treatment I went home, drank lots of water, and was feeling very tired. I got into bed and slept at least 3 hours in what seemed like an instant. It was a very sound sleep, and I felt more refreshed afterward. I experienced a minor unsettled feeling in my stomach and wasn’t much interested in food. It was only when my wife forced me to eat cheese, cottage cheese, or crackers, that I ate much of anything that day. I got to feeling more hungry later in the day. I went to bed quite early and slept a lot. Other than being tired and having a little unsettled stomach, I didn’t experience any side effects at all.
On the second day of treatment, my lunch bunch friend L. woke up at 5am to drive to my house and pick me up to take me to my treatment. I am so grateful for that, and am not sure how I can ever repay her effort since she did it for four straight days in a row while my wife was at work. I’m pretty sure I’m not that good a friend, to merit such a sacrifice but I am eternally grateful.
For this second treatment, things were pretty much the same but I had the hang of the breath-holding and was able to easily get to a count of 40. They complimented me again on how long I could hold my breath, and started asking how I was doing it. I was glad that I was a memorable patient, but I was even more glad that if I was being still for so long, hopefully the radiation treatments were more accurate and effective. I worked from home for some of that morning, but drove into the office and worked a full day with no ill effects except not being very hungry at all. I did need to take a 20-minute nap in my office though, because I was quite fatigued. I had some lentil soup at the Turkish restaurant with my lunch bunch friends, and it was well-received by my tummy. In general, I felt better on day two than on the first day, though working a full day left me very drained at the end of the day.
On the third day of treatment things were again very much the same, but I was getting breath-holds to counts of 40-50 or more, much more easily than before. After the treatment was done, they said I had set some kind of record for breath-holding. Mostly I was grateful that I could remain still for so long, to get the treatment over with faster and more accurately. After the treatment I went back to work and worked another full day, and I was eating better and getting my appetite back. I still confess that at 3pm I had to take a nap in my office for 20 or 30 minutes, and I hope I wasn’t snoring at all. 😛
The fourth and last day of treatment I was excited to get over with, and I didn’t sleep as well the night before because I kept envisioning what the end of my cancer journey might be like. My friend L. picked me up and drove me to the treatment, and this time I exceeded my previous breath holds by a great deal, able to go to the count of 65-70 several times. If I had been able to make it to a count of about 80, I could have done a cycle in one go, but I wasn’t quite able to get that far. Again the radiation oncology team was impressed with my breath-holding. At the end, I went outside and rang the bell while my friend L. coached me and captured video of the event. I was surprised that even with no one seemingly around, after ringing the bell a cheer and applause came from somewhere, like the entrance of the cancer center and from doctors and nurses passing by. Awww. I didn’t want to make a scene so I didn’t ring the bell in the radiation oncology area.
Which is weird, I didn’t want to disturb anyone still going through their treatments, but I remember being around while people rang the bell and it made me feel super happy and proud that someone had endured it all with grace and hopefully, great success.
So where we are now is in surveillance mode. Over the next weeks and months I will be giving blood for CEA tests, and we will be looking for the levels to be going down and not up. There will be a follow-up CT scan in the next month or so, and then probably a PET scan in a few months if CEA scores aren’t moving in the right direction. With any luck, this will be the start of remission and I can look at this experience in the rear-view mirror, and live a lot of happy years!
On Friday, my last day of radiation treatment, I took the day off work hoping I would feel good enough to drive to the beach and meet my sister S., brother-in-law J.D., my Mom, my niece B., and her fiancé B. I didn’t quite have the energy after treatment to leap into a 3+ hour drive, so I took a long nap, did some leisurely packing, had a lunch of some of my Chicken Tikka Masala that I made a couple days earlier, then left for the beach. I took my time, stopping at rest areas and gas stations for a walk every hour to avoid pulmonary embolisms or other complications. I arrived at the beach house and hung out with my family. We played a card game called Phase 10 and my niece B. won, which got her picture posted on the Winner’s Circle board on the wall of my sister’s beach house.
We turned in for the night, my sister and brother-in-law sleeping in the master bedroom, my niece and fiancé sleeping in the double bed in the other bedroom, and my Mom and I slept on the L-shaped couch in the living room. In the morning, everyone woke up to me sleeping under a mountain of comforter on my back with my right leg crossed across my left knee, and my bare foot sticking out of the covers. No other part of me was visible. This struck them all as funny so the moment was immortalized in a page of my sister’s travel log.
We visited together at the beach all of Saturday, going to lunch for fried seafood, which didn’t bother my tummy at all, but I didn’t have large portions anyway. We played another card game in the late afternoon called Five Crowns, and I made it into the Winner’s Circle for the first time ever! Competition is pretty fierce with this crowd.
After the game I left to return back home, I visited the beach to get my toes in the sand and dipped in the cold water, then I drove home.
The next day I packed our van with overnight supplies, went shopping for snacks and necessities, and after my wife got off work, we got underway on a drive to Asheville NC so that my youngest son J. could go on a college tour.
On the way, we stopped in Hickory NC at the pub of one of my favorite breweries, Olde Hickory Brewery. This was difficult since I haven’t been drinking alcohol for the whole duration of my cancer diagnosis and treatment, which is now almost 18 months.
But Olde Hickory Brewery has a special seasonal beer called Event Horizon that is my favorite beer. It is truly stunning. It is described as an “Imperial Stout brewed with local honey, rich and robust with deep notes of dark chocolate and espresso and aged in bourbon barrels,” and is 12% alcohol by volume. Even though all the bottles are sold out by November, they had the beer on tap at the bar. I used all the charm I could muster to convince my wife to buy a flight glass of Event Horizon for $4.00 and give me a celebratory tongue-wetting. It was a couple of tongue-wettings actually, less than a teaspoon total of beer, but I cannot describe how amazingly, beautifully wonderful it was to taste my favorite beer at the end of nearly 18 months of cancer battle. I felt elated and surprisingly emotional at this moment. And my wife really liked the beer and drank the rest of it!
After visiting the gift shop and buying some pins, a hat, a cool T-shirt, and a 750ml bottle of Olde Rabbits Foot for much later, we jumped back in the car to head for Asheville. We stopped at the Lake James exit to get lost looking for a dark place to view the night sky and sadly, there might not be a place in our state where there isn’t an LED street lamp within 100 meters. The sky was pretty anyway. We got to Asheville, checked into a nice hotel, and got to sleep by midnight.
Which was good because we had to be at the university around 9:00am. We woke up around 7, showered, had some breakfast downstairs of weird meat sausage, eggs on carb muffins, more carbs, starch, strawberry-flavored carbs, sugar, carb juice, and carb-flavored jam. This is why I usually skip breakfast, it’s by far the most dangerous meal of the day if you don’t just have a couple of eggs.
The university tour went off without a hitch, it was a nice, small, insanely highly-rated liberal arts college, and it had a beautiful art building with a fantastic ceramics studio and several modern kilns including a raku kiln. Of course my son probably doesn’t share my love of pottery so his tastes could be different.
After the tour we went into Asheville proper, had lunch and went to a unique place called Madame Clutterbuckets Neurodiverse Universe:
We delighted in browsing this shop. It had antiques, magick stuff, card games, patterned socks, T-shirts, cat clocks, and all manner of interesting things.
My wife bought me this amazing tea towel to commemorate the occasion of my irradiation:
We loved this little shop and we found a huge variety of enamel pins (something we like to collect in our household), so I got a Jewish Space Laser Corps pin and my son J. got a Skinwalker Ranch pin among others, and some stickers. I filled out a survey for a local university student’s research project. It was a good time.
Then we drove back home through pouring rain, lightning storms, and huge double rainbows. What a lovely end to a week of radiation treatments!!