It has been such a long time since I have written an update to the blog. When last I wrote, I was about to leave for the big Amtrak Zephyr trip and trust me, I will post about that trip. It was absolutely wonderful. I have been organizing and editing photos and writing text in between so all the non-TLDR types can spend time sharing in it. I am so grateful that I was able to have that experience and it was all I ever hoped for and more! I am so grateful to everyone who made it possible, and not a day goes by that I don’t think back on it, or talk about it with people. Even almost three months later it continues to bring me smiles and joy.
And right now it is good to have a bucket of smiles and joy that I can draw from when I need it. Despite keeping up my usual optimistic cheer, some cracks are beginning to form in the hopefulness foundation. My general day-to-day attitude is sunny though, and full of gratefulness at each new day that dawns. The darker bits of my odd sense of humor bleed through sometimes, but I don’t like the worry that crosses people’s faces so I try to scale it back a bit.
Medically, the journey grows ever more discouraging. I had a CT scan on June 18 to assess the progress of the most recent chemotherapy drug, Fruzaqla. I started taking Fruzaqla the week after the Zephyr trip, on April 23, and it was only recently approved by the FDA in November 2023. The main goal of the drug can’t be classified as any sort of miracle cure; it is the sort of drug developed to try and arrest or slow down the growth of Stage IV cancer. For many people it gives you some additional months of time. Despite its modest objective, it is by far the most expensive drug of them all, costing about $1,000 per day it is taken. I took it for 21 days, had 7 days off, then took it for 21 more days. Then we did the CT scan to see if it had any appreciable effect.
At first my oncologist said there were a few millimeters of growth in the index tumors that we are watching the most closely, so it sounded like the chemotherapy was doing its job and we decided to continue with the drug despite its horrible side effects.
And the side effects were indeed horrible. A few days into taking the drug I got very sick with a wet, productive cough and fever. I was given tests for COVID and the flu, and thankfully it was neither of those things, possibly just a side effect of the drug or an infection my poor struggling immune system couldn’t keep ahead of. I was instructed to hold off on taking the chemo and see if things improved. On day 4 of being sick I was coughing up tons of gunk to the point that my throat, nose, ribs and core muscles were burning with pain, I was getting constantly dehydrated from a full-scale revolution going on in my GI tract, and I got so weak I couldn’t get myself out of my recliner without falling backwards back into the chair. I realized with a dread seriousness on Sunday night, that I was not going to survive whatever this was without extreme measures.
On Monday morning, I woke up resolved to call 911 and go to the hospital. My oncologist’s PA called me at that very moment and we chatted about how dire things were, and she put me on a regimen of two different antibiotics. I was hydrating like crazy and I was feeling some improvement as quickly as six hours after taking the antibiotics. I weighed myself, and had lost 16 pounds. A couple more days and I was feeling more like my usual self, and we bravely restarted the chemotherapy and watched carefully. After finishing the antibiotics, I realized I had a weird aversion to meat: the thought of eating pork, beef, lamb, and chicken just didn’t appeal to me. It didn’t make me want to throw up, it just didn’t seem like food that human beings should be eating. This completely gutted my keto diet. The course of antibiotics also left me with what seemed like a complete inability to retain and digest food. About an hour after eating everything just went right through me. I ate a lot of yogurt, drank kefir, took probiotics, and fell back to something like a BRAT diet (bananas, rice, applesauce, and toast), but since those are entirely carbohydrates I took to eating bland foods with fiber. I had bread–which after being on a keto diet was just nasty–high fiber fruits like raspberries and blueberries, nuts, cauliflower and broccoli–sans brussels sprouts, which also did not appeal to me–and fats like cottage cheese, cheddar, goat cheese, parmesan slices, sour cream (yes, eaten with a spoon). I also had eggs for protein, since my GI system thankfully declared eggs as nihil obstat — so, deviled eggs without spice, french omelettes, hard-boiled eggs, and ajitsuke tamago.
The first big side effect of Fruzaqla is that I almost immediately lost my voice. I ended up with a fragile, quiet, hoarse sort of goose-speak that stayed with me until the day after I stopped taking the chemo for my 7-day rest period. The most horrible side effect was that my blood pressure went up from 112/62 to 178/96 and gave me headaches that felt like I was going to have a stroke at any moment. I started having chest pains, like an invisible finger was being pressed against my ribs quite hard. I grew sensitive to bright light (which still hasn’t completely abated), so whenever I went outside or was exposed to bright lighting I developed a pain in the gooey gel of my eyeballs that was intolerable and distracting because I could hardly think about anything else. I was also more fatigued than usual, and more fatigued than I ever remember being: after only a couple hours of sitting up in my chair, I often involuntarily fell asleep for a half hour or so, and after coming home from work I often slept for hours in the recliner, only to wake up refreshed and unable to sleep again for a few hours. Also after supporting my upper body in my chair at work, after a few hours my lower ribs and core muscles ached like I had just run ten miles. My liver transitioned to causing me almost constant low-level pain and discomfort. My feet grew very painful and I picked up some opportunistic infections that made it very painful to walk, especially up and down stairs.
And finally right after my anniversary, on May 23 I got a 7-day break from the chemo and I suddenly had energy! My core pain, foot pain, muscle aches, and fatigue mostly went away! It started to become quite obvious which [quite tolerable] symptoms were probably the cancer and which [horrible annoying] symptoms were the chemo. I decided on May 28th that this was the worst chemo of all of them. Worse even than irinotecan? Maybe. You see, the difference between being loaded up to bursting with a bag of IV chemo that felt like a caustic river of poison and a tiny one-a-day chemo pill is that at least with the bolus of chemo you suffer but every day afterwards is better. The Fruzaqla was quite the opposite: every day worse than the one before, and you find yourself eyeing day 21 on the calendar and wondering if you can make it. It’s a sword of Damocles sort of situation because you feel like any day that single strand of horse hair might break and you will suffer a sudden and fatal blow.
Luckily after a consult with my cardiologist, my heart medications were adjusted to help my blood pressure come down to not an especially good level, but enough to improve the headaches and feeling like a stroke was imminent. This enabled me to soldier on and take a second round of Fruzaqla and though it wasn’t at all pretty, I got through it.
The Actual CT Scan Results
So a couple days after the June 18 CT scan and doctor’s visit where we decided to continue a couple more cycles and follow up with another CT scan, I was able to access the CT scan analysis report on the MyChart application and I was a little shocked at what I was reading. And what I was reading was not particularly good.
First of all, my carcinoembryonic antigen (CEA) levels were now at 288.5. If you plan on living to retirement age, you had best hope that the level is under 2.5. This is almost doubled from the level on May 7.
A couple tumors in my liver increased in size. A tumor in the left hepatic lobe grew from 22m to 26 mm, and one in the posterior right hepatic lobe grew from 15mm to 21 mm. In the photos below, it looks alarmingly as though there are new tumors present but they represent small tumors that were evident in higher or lower slices and have grown into the slice you see.
The tumor on my peritoneum is probably the biggest concern as it can begin to leak lymphatic fluid into my abdomen, which would need to be drained if it got to be a large amount. The peritoneal tumor increased in size from 12mm to 21mm, which is a substantial 75% increase in diameter.
In my last visit with the oncologist a couple weeks ago, I told him I felt the chemo wasn’t working well enough to justify the unpleasant and potentially dangerous side effects. My liver is quite overstressed at this point, my bilirubin levels are increasing, my blood platelets are going down, and my liver numbers are going up. He agreed with this decision and we discontinued the Fruzaqla chemotherapy. That is the last FDA-approved treatment available to me, unless we want to pursue dusting off some decades-old IV chemotherapies that aren’t likely to help much.
It’s discouraging news, but for some reason it hasn’t gotten me down like I thought it would. It’s lit a little fire under me to make sure I get some legal affairs in order, but emotionally I feel pretty solid. I’m going to keep on driving:
Good News, X-Men… I’m a Mutant!
Or at least, my cancer is. But this is how good comic book origin stories get started!
My tumors have been genetically sequenced a couple times a year so that the most effective therapies can be prioritized. That testing found that I have a mutation called KRAS. Cancer cells with KRAS mutations are fairly resistant to chemotherapy and immunotherapy, and they grow aggressively. For my type of cancer, the median survival rate of people with KRAS mutations is about 2 years. I’m currently at almost 3 years, which is pretty respectable.
There are two promising studies of competing drugs that target the KRAS mutation and use it to deliver targeted chemotherapy to any cells presenting KRAS. In order for me to be considered for the study, my platelets need to be above 100. When I took my 7-day break from the last round of Fruzaqla my platelets were 44. Two weeks ago they were 67. If my platelet levels can bounce back, I may be eligible to try this experimental drug. This is another reason why I’ve decided to stop taking chemotherapy at this time.
Apparently it’s tricky to get those platelets produced: rest and exercise help, but eating leafy greens and iron-rich foods helps. Also the same kinds of meats I’ve had an aversion to lately, I’m learning to choke down. Also liver! Hmm.
So let’s cross our fingers and hope Plan B works out!
In the meantime, I’m taking advantage of having energy again and trying to venture out and enjoy life. I have been so fatigued the last few months from the chemotherapy, that I haven’t left home on exciting trips in a while. I’ve been doing fun things around home when I have the energy. Here’s the sort of stuff I’ve been up to:
Northern Virginia and Richmond
I went with my oldest and youngest sons to Virginia to visit my parents and sister. We had great food and chilled out for the weekend. It was nice to just unplug and relax. I’m always so stressed on weekends because I don’t feel like I have so many of them left, so I have a big checklist of things I’m trying to accomplish. But for months I haven’t had the energy to check off a lot of those items and it disappoints me. But being surrounded by family, love, and stories makes me forget everything and just live in the moment, which is also good for me.
I guess that a new part of our family ritual is that we talk about all our medical problems, and everyone has got them. I probably wasn’t paying attention to this because I never noticed it when I was a kid, but it seems like a lot of gab by people over 50 is spent sharing doctor experiences and medical horror stories. I don’t remember us ever talking so darned much about poop! Well, except when I was a toddler. We come into this world as babies needing careful care and toilet training, then we live, love, and dance around for a few decades and then we need careful care and toilet training again… and THAT is the circle of life I think.
I got to help with technical issues on my sister’s quilting machine. Pictured above is a seriously cool piece of hardware for stitching the whole quilt together with the backing and all the layers. We did all this while dinner was cooking, and what a great dinner it was! We called it “suitcase salmon” because my sister brought a bunch of frozen wild-caught salmon home from Alaska on a recent flight and it was sort of funny to think of all that fishy cargo. Don’t knock it though, it was incredible salmon:
We also got to meet my sister’s new kitten, Princess Daisy Moonbeam G. She was so adorable, we all covered her in welcoming kisses and attention.
I got to have lunch and dinner with my friend Bick in Richmond to celebrate my birthday, and we had Cuban roast pork for lunch and NY Strip Steak for dinner as I try to get back on track with my keto diet. He gave me his old matched pair of 27″ gaming monitors which are awesome in my secret lab as I slowly go blind. It’s nice not having to squint so much at the tiny letters.
Happy Birthday to Me
My birthday was spread out over several days this year, which is a nice indulgence I don’t normally experience. But on my birthday itself, my oldest son IG took us out to one of my favorite restaurants, Bua Thai, where his best friend makes the desserts. It was a great dinner and I ate way, way, too much and went home and fell asleep.
My darling wonderful wife made me a keto cake inspired by the legendary Raspberry Zinger. It had whipped cream frosting flavored by powdered freeze-dried raspberries and Stevia. The following cake is one that she made, but I realized we demolished her birthday cake before anyone thought to photograph it so… the cake pictured is an appropriate placeholder:
Due to work schedules, we couldn’t include our middle child JJ in the Bua Thai dinner so the next night we celebrated a birthday make-up dinner at El Rodeo Mexican Restaurant. My wife had two medium margaritas and I had a little taste which was delicious but much sweeter than I remember. It turned out that two margaritas was a little bit much because my wife knocked over her glass of water while emptying leftovers into a carryout container and it was directed mostly at our oldest son IG who was left with a shocking ice-cold crotch water bath. His horrified expression was priceless. I ended up tipping extra because it took several people to clean up the mess and I felt bad. One of them picked up on the fact that it was my birthday (you should NEVER say that word in a Mexican restaurant!!!), and I got the embarrassing Sombrero moist-feliz-cumpleaños treatment since by that time my pants were also kind of wet. Fun times!
June 29 Beach Trip!
I went to Ocean Isle Beach with some of the kids and we stayed in my sister and brother-in-law’s beach house. I made a little project out of fixing the deadbolt strike plate, which was actually just a lockset plate which creates problems. It fits fine in the winter months but with wood expansion from the heat of the summer, the deadbolt doesn’t line up correctly and the place can’t be properly locked. I didn’t think to bring tools but I found a sale on a cool cordless craftsman drill for $50 and with some chisel work and drilling, I got a new strike plate to fit correctly.
We went in separate cars so I was able to wander around alone. I hit some crazy traffic going to the nearest beach so I went up to Sunset Beach instead and walked around for an hour before the 90-plus degree heat seemed about to kill me. I went to Boundary House and got a bowl of their awesome clam chowder, and wandered through tourist shops. I went to Ocean Isle Beach later when it was dark and cooler (82 degrees!). I was able to walk into the water which felt heavenly on my poor abused, neuropathic feet. I probably looked like an idiot standing in one place with a blissful smile on my face, not moving anywhere; but I didn’t care. I’m going to do me.
On Sunday we packed up and went to Myrtle Beach, then headed home from there. I ran out of energy at Benson NC and slept a couple of hours at a rest stop on the way home. My fatigue isn’t as bad as when I was on the chemo, but it is still there and when I’m out of energy I am completely spent.
June 16: Father’s Day!
For Father’s day we went to a Durham Bulls game with my father-in-law, my oldest son IG and my youngest JH, and nephews AZ and WZ. Getting tickets was tricky since the park was nearly sold out and finding 5 together was not possible so I got one lone ticket a few seats away. But happily there were some no-shows next to us and we were able to all sit together.
Sadly the Bulls didn’t win but we had great seats under cover from the sun and there was a cool breeze making everyone more comfortable. My father-in-law is a huge baseball fan and it is fun to listen to baseball stories and trivia. He always wears his Detroit Tigers cap that IG got for him, and the Detroit “D” logo could be taken for a Durham “D”, so it’s kind of a double-fan service.
May 28: A Day Trip to Hillsborough NC
Hillsborough is only a dozen miles away from Durham, but having an extra day off on Memorial Day weekend, we thought we would take a day trip down. We have already visited Ayr Mount a couple of years ago. It’s a beautiful house built in 1815, and I highly recommend going on the tour.
This time since I had just finished round 39 of chemo and was starting to get my sunshine back, my wife suggested we do a nice flat hike around the Occoneechee Speedway Trail. It meanders over to one of the first NASCAR tracks, which now sits overgrown and abandoned, but is a beautiful flat walk. And it ‘s really only a little hike from Ayr Mount, if you don’t mind fording a river and some wild underbrush.
The old track is still there as a trail, and you can still see it curves up on one side. It is comforting to me to see nature reclaim a place that had been utterly cleared of trees. I fervently dislike humanity’s destruction of wild spaces and habitats, and these kinds of abandoned places leave me with such misanthropic pleasure. I’m not a fan of humanity but all the individual people I meet, I love so much. I’m never sure how to square that in my head.
There are a couple rusted out cars still present. There’s something sad about those lost old vehicles. Once they moved under their own power and had all the freedom of the roads to look forward to. Then something breaks and people gave up on fixing them, and they just fell in the battle with time.
It comforts me to know that the fate of all civilizations is to be reclaimed and covered in ivy and forest. All the cacophony and frenetic activity will be replaced by peace and the haunting buzz of cicadas. Niiiice.
Next we went to Spencer’s Tavern in town. It’s attached to a little in called the Colonial Inn that’s finishing its renovations and looking very handsome indeed. It has a menu full of lovely southern comfort food dishes prepared expertly and creatively. I had Fried Green Tomatoes and Deviled Eggs, and a hot Ham & Cheese sandwich. One of the old members of the Squirrel Nut Zippers was at the table next to us!!!
After a fantastic lunch we went to the Orange County Historical Museum which was small but quite interesting. I learned that Mazda used to make light bulbs!
And I found an amazing desk and a sign I want on my office door at work:
I also saw this cool old radio that was preserved in excellent condition, with two owners before it was donated to the museum. It is believed to be the first residential radio in Chapel Hill in the 1920s.
My wife got tired walking around before I did, which is highly unusual these days. But I did drag her to the cemetery to find the grave of someone who is quite possibly one of my relatives, William Hooper, who was a signer of the Declaration of Independence.
May 25: Durham Bulls Game
It was my second Bulls game this year out of three so far, and we went with my son IG’s coworkers. We were able to bring my father-in-law along as well and we all had a wonderful time. There were fireworks after the game, which was loud but exciting. One really nice thing about having an expiration date on your life is that you can embrace all the cool things you couldn’t do to your ears before like go to concerts with no earplugs, playing headphones at max volume, and pumping your music in the car so loud that the windows bulge. Oh yeah!
May 23: Pool League
I am still able on most weeks, to play at least one match of pool every Thursday night and I have been improving greatly, holding my own as a rank 5 player. I have even begun winning some 9-ball games! I wonder if I can get to a rank 5 in 9-ball as well! We have an incredible team and I hope that we make the playoffs this season, there are a couple more weeks to go and we are playing pretty well. We took this selfie on my phone because my wife realized she didn’t have any photos of me at pool league:
30th Anniversary!
Our anniversary began with a trip to the lab and to the oncologist. I headed to work and after work we celebrated our anniversary with a dinner at one of our favorite date spots, Parizade, which has incredible mediterranean dishes.
It’s been thirty wonderful years of marriage to the most delightful, witty, patient, resilient, and beautiful lady I’ve ever known. Life together is full of joy, laughter, and thought-provoking discussions. Even life’s little curveballs are easier to handle as a team.
That pretty much catches us up except for the Zephyr trip, which I am continuing to document. A week of travel is a difficult thing to get time to narrate and post. Stay tuned!
