It has been far too long since I posted an update, but lately it feels like every single moment of every single one of my days is overscheduled. It has been giving me a lot of extra stress and I think I need a vacation… soon! But I only have a couple vacation days saved up and I have to be careful about using them in the run-up to Christmas.
So let’s catch up and talk about some of the things I got to do up until today.
Sept 13: Dinner with friend S. at https://www.scratchkitchenandtaproom.com/. I’ve known my friend S. since about 2001. I have always found his honesty refreshing and I love hearing his stories. He is particularly open with me, more so than with other people, because I am never judgmental about his life choices. I get to live sort of vicariously through him because he is unfiltered, no-nonsense, and he doesn’t tolerate a bunch of crap from people. I admire his strong boundaries and ability to live for the day. We always have fun conversations even about the tough parts of life.
Sept 15: Visit from friends AS & PV. One of my early college friends AS and her husband PV stopped in our town to visit us on their way back home to Connecticut. It has been something like 8 years since we have seen each other, which is a regretful number of years. How do they fly by so quickly? It was my first time meeting A’s husband PV since they have been married for 3 years and the whole COVID thing really arrested our travel plans for a long time. We went to some nice local favorite restaurants and did some well-deserved catching up. It was nice to visit old friends, it is truly one of the greatest joys of my life to spend time with friends and family.
Sept 22: Visit Parents and Sister in DC. I took a day off to travel with my sons IG and JH to visit my parents and sister in the Washington, DC area. My father was scheduled for heart surgery the next Tuesday and I couldn’t be around due to my Chemotherapy #31 happening at the same time. I wasn’t super worried about the surgery because it is fairly routine and low-risk these days, but I was a bit worried. My father is built from pretty tough and resilient stuff. I think this is the first time I can think of where my father had a surgery or any kind of sickness at all. I’ve always thought of my father as an immortal sort of force of nature, so worrying about him didn’t come to me naturally, but I managed it anyway. All in all we had a wonderful visit, and my father got to spend some time teaching the boys how to do woodcarving, one of his super talents.
Of course, after the surgery instead of the rest he was supposed to take, he was up on his feet weeding the garden and even driving to Centreville to load a lawnmower into the bed of his truck. It is impossible for him to sit still for any length of time, he is always accomplishing something from his checklists. I like to tell people that he’s like a shark and will die if he ever stops swimming. That’s my dad!
Sept 26: Chemotherapy #31. This cycle, my blood work showed my carcinoembryonic antigen (CEA) levels increased 29% which says there is more cancer growth happening. I sort of expected the levels to taper off or go down if the chemotherapy is working and the radiation treatments killed the liver tumor, so this was a disappointing result. I am just hoping that enough cancer cells are also dying (which we can’t measure without a CT scan), to cause the tumor size to be stable or even for it to be shrinking. I got a dose of FOLFIRI plus Bevacizumab and went home.
This cycle caused me more fatigue than usual, but I had no nausea or mouth sores which was nice. I still attribute these easier chemo symptoms to the low-carb diet. Pooping is still never fun though. It was bad on Saturday because the caustic liquidy poops made everything irritated and painful, to the extent that my son IG had to take my arm and walk me down to my recliner so I could rest on its gel cushion. And on that weekend after chemo, I am limited by what I can accomplish because I have to stay close to the bathroom for several days.
Sept 30: Gatherings. Despite it being the Saturday after chemo–which is really the worst poopy day after chemo and I don’t like being too far away from my own bathroom–we had two social gatherings to attend. It was delightful to meet new people and have engaging conversations, something that feels increasingly rare since COVID. It was lovely but definitely took a toll on my already-low energy level, and I fell asleep in my recliner that evening while catching up on my favorite YouTube video feeds. For example, I love to follow Ghost Town Living, Eamon & Bec, Camping with Steve, Bedtime Stories, Eva zu Beck, Isabel Paige, half a million cooking channels and woodworking channels. There is something so relaxing about voices telling adventures from afar while I’m snuggled up in my sister’s purple flannel magic sleeping quilt, it lulls me to sleep most of the time (except on chemo day with those darned dexamethasone steroids! Ugh!).
October 2: Endocrinologist. I had the most amazing visit with my endocrinologist, who looked at my blood sugars and blood work and gleefully announced that he was taking me off all diabetic medications because he considers me no longer diabetic. The low-carb diet has completely controlled my blood sugar. No highs, no lows, just a solid blood glucose reading between 80 and 100 pretty much all the time. This has been one of my goals in fighting my cancer, since diabetic patients succumb to the disease earlier, and I would like to live as long as possible with as high a quality of life as I can manage.
October 5. Pool League. I have been lucky to have felt well enough to go to pool league nearly every week, though the 6-hour period of practicing, standing, playing, and tallying matches often tires me out by the end of the evening. My 8-ball game has been suffering even as my 9-ball stats have been very good. But this particular night I played Doug, who was on my pool team for many years and stopped playing league for a few years, and just returned to the league with another team. From the time I was a league n00b about ten years ago, Doug has coached me, practiced with me, and given me some dastardly time outs (his defense strategies are aggressive and effective). I’ve missed getting to see him every week. This week though, his team put him up against me in an 8-ball match and I eked out a win. I don’t think I’ve ever even won a single game against him in practice and never had to play him in a match before. He wasn’t as happy at the result of the game as I was, but he was a good sport. It was a happy, validating moment for me and it was an incredibly tense, close and hard-fought match. I expect I just got lucky that night to come out on top.
October 6: Ocean Isle Beach. I took Friday off work to catch up on some of my automobile maintenance, getting the minivan oil changed, changing out front brakes on the Smart Brabus, and taking it to get the leaking flex pipe replaced, then getting it inspected and registered. When my youngest son JH got out of school, we drove to Ocean Isle Beach to visit my sister S and brother-in-law JD at their beach house. I got the whole spare bedroom to myself and slept in absolute peacefulness that evening, I can’t remember the last time I got such a complete and restful night’s sleep. The beach always seems to do that to me.
It was finally a well-needed bit of relaxation and I realized that lately I have been deeply, terrible worn-down by all that irritating stuff you gotta do day in and day out. I am just exhausted and this last round of chemo, though it didn’t have a lot of side effects, left me with a deep fatigue (for actual medical reasons that explain this fatigue, see my paragraph on chemotherapy #32 below).
We went to breakfast and spent the rest of the morning walking up and down the beach looking at shells and though there were some moments of rain, it was a perfect sunny breezy day.
October 12: Gary Gulman performance. My wife and I had the pleasure of going on a date to the Carolina Theatre to see Gary Gulman perform his comedy routine and book-signing tour. He is always a hoot and a holler, and I love his cerebral ramblings. We’ve seen him a few times live, and it’s always a good show!
October 12: Middle-child JJ’s Birthday! On this day we went out for a birthday dinner at our favorite Mexican restaurant and were joined by Grandma K and Grandpa J. Happy Birthday JJ!!!!
October 14: Missed an important wedding. I have long had an optimistic hope I could make the 15-hour drive up to upstate New York to attend my cousin KM’s wedding, but on doing a sort of systems check of my health, I realized that it was not going to be a reachable goal. I also would have to return by Tuesday for my next round of chemotherapy. I really wanted to see practically everyone in my family there. The previous week I was fatigued, and this week was worse. Unless I went by plane I wasn’t going to be able to stay awake long enough to keep all four tires on the road. It was a disappointment for me and I hope the family forgives my absence and that I get another chance to give my cousin KM a big, loving, supportive hug. Congratulations KM!!!
October 14: Eagle Scout Ceremony. My nephew WZ achieved the rare rank of Eagle Scout and we drove down to Pittsboro for the ceremony. It was an inspiring celebration of his hard work and dedication. WZ reminds me so much of his father, my brother in law JDZ, who will always be one of my favorite and cherished humans of all time, he lived with me and my wife–his sister–in Williamsburg for a while and died in 2008. I am so proud of his son WZ’s accomplishments and the fine young man he has become. I can’t really mention my pride in WZ without also saying that his mother JZ is one of the most invested and loving parents anyone could be lucky to have. Also my mother- and father-in-law KSZ and JPZ moved down here to help care for those 4 children, who are growing up to be such wonderful people.
October 15: Work Conference. I got to attend a work conference in Raleigh with several of my coworkers. I got to see several interesting lectures about open source solutions, meet dozens and dozens of vendors, and even run into some old faces I haven’t seen in a while!
October 17: Chemotherapy #32. My blood labs showed low red blood cell counts, hemoglobin, hematocrit, and platelets which help explain why I feel fatigued and more easily winded.
My white blood cell counts were about half the minimum values, so I was prescribed another dose of Udenyca, which stimulates your bone marrow to produce white blood cells so your immune system and healing ability aren’t so badly affected. I was also given a 25% reduced chemotherapy dose to keep my numbers from dipping too low in this cycle. Since the last time I took Udenyca I had disturbing bone aches and a general unwell feeling, they told me this time to try taking a Claritin every day for a few days before, and for several days after. Once the take-home 5-FU chemotherapy football was taken down on Thursday, after riding the side effects for a few days until I felt more normal, my wife injected the Udenyca subcutaneously into my arm. She did an excellent job, it was barely noticeable as I got the injection. My Carcinoembryonic Antigen (CEA) continues to rise linearly, this time it rose 27% from 11 to 14 meaning there is some growth of new cancer cells. This doesn’t tell us if any have been killed by chemotherapy, so we won’t be sure until the next CT scan whether things are getting better or growing worse, but these rises are sill a concern:
All in all, this round of chemotherapy was as tolerable as the last few, which were made dramatically better by following a low-carbohydrate diet.
October 20: Dryer Failure. It seems like this is the season of things breaking lately, and my electric dryer was the next casualty. I got it repaired after a few days and it was nice having clean clothes again!
October 25: JJ’s First Car! I found a coworker selling a used 2012 Subaru Impreza with only 100k miles for a great price, way under retail. I test drove it, crawled around underneath it to check out the CV joints, brakes, exhaust, oil leaks (none), and checked out the service records on CarFAX. It’s a great vehicle, so I consulted with JJ, and we arranged to purchase the vehicle with a bit of the money JJ has saved over the past couple years.
October 27-28: College friend visit. I was overjoyed to learn that my college roommate and good friend YS was flying down to spend a couple days in the area. It has been many long years since we’ve gotten a chance to visit, perhaps 8 years? He lined up a hotel, rented a car, and worked from his hotel on Friday. That night we went to the Angus Barn for a lovely dinner. We learned it can seat about 7000 people, and there were only two reservations available that same day, one at 6:30pm and one at 9:00pm, and both were recent cancellations. The food was great and we had a good time catching up. The next day we went walking through Duke Gardens, had lunch at my favorite Turkish restaurant, Bosphorus, where I tried the Chicken Doner Kebab and he had the Ali Nazik. I showed him the campus where I work, and then we went walking through Cary’s Hemlock Bluffs Nature Preserve, where a microclimate caused by bluffs allows a grove of hemlock trees that usually grow at higher elevations in the North Carolina mountains, to grow and thrive here. We had dinner at the Refectory Cafe and stayed at the outdoor tables until the restaurant closed, having an easygoing long visit over great food. I am so flattered that I have friends that are willing to go through the time and expense of coming down to visit me. I really enjoyed getting to catch up and reminisce with YS, and we were lucky to have a beautiful day to enjoy outside — not too hot or too cold, just a perfect day!
October 29: A lovely unscheduled day. I have to include this day because I made absolutely no plans for the day and spent it wandering around, getting supplies at the store, sleeping in, relaxing, sitting in nature and generally enjoying the day. It was refreshing and allowed me to approach the scanxiety of the next day with less concern and worry.
October 30: Sick and Tired, also Scanned. The chemotherapy has essentially caused my nose hairs to fall out or thin out, and this has embarrassingly caused my nose to run almost constantly. I’m always using a folded over bunch of tissues in my pocket to dab away the runny stuff, but today I felt pretty terrible, had some respiratory congestion, lots of nasal congestion, bad cough, lower blood oxygens, higher blood pressure, and then had to go to the Cancer Center to gave my CT scan done. They accessed my port, gave the the CT scan, injected a couple hundred milliliters of contrast, and scanned again. I didn’t get the results that night, but had a little trouble sleeping while worrying about the results I would get the next day.
October 31: Chemotherapy #33. We arrived at 8:00am for our appointment with the oncologist, where we learned that the CT scan results showed no increase in the size of my peritoneal tumor, which means that it is stable — neither growing nor shrinking. There were also no new metastatic tumors, and the liver tumor treated with radiation seems to be the same size though it’s too early to tell if that liver tumor’s cells have died. There is a small amount of peritoneal free fluid, which is a side effect of having a peritoneal tumor interrupting the proper flow of the lymphatic fluid in my abdomen. At some point it will get to be so much fluid that I’ll look pregnant, and they will have to regularly punch through my abdomen with a tube to drain it, but thankfully we aren’t there yet!
My CEA levels increased another 20% to 16.8. But it looks like from the CT results, the tumor size is stable.
My red blood cell counts improved somewhat, but especially improved were the white blood cell counts and neutrophils are right in the middle of the desired range! Great news! It means the Udenyca injection did it’s work very well.
We did skip the Bevacizumab but went with 100% of the FOLFIRI dose this round. Skipping the Bev will help my red blood cell counts not to go so low, and hopefully won’t badly affect the cancer growth.
So as of today I am tolerating the chemotherapy quite well, very few side effects at all except for the usual poopy issues that FOLFIRI causes. I am also not feeling quite so fatigued, which is a good thing.