March 19, 2024 – Chemotherapy #37 Cancelled

Yesterday I had another CT scan to assess the progress of the Lonsurf/Bevacizumab therapy regimen, and the news from the scan wasn’t great: there is one new 1cm tumor in my liver, about 50% growth in two other tumors, and no change in two others. There was a 20% increase in the size of my remaining peritoneal tumor, but no increase in the level of ascites, or fluid in my abdomen. There aren’t any new organs affected by metastasis, which is a blessing. There are signs of stress on my liver, as my bilirubin levels are increasing.

So we decided to discontinue the Lonsurf/Bevacizumab and look into other options, giving my liver and bone marrow a bit of a recovery period since my platelets were back down to 47. There is a study drug I may qualify for, and a newly-approved drug called fruquintinib that we can try if I am not eligible for the study.

To be honest, we are running out of treatment options at this time, short of traveling to another part of the country (or to other countries) to participate in other trials, though I don’t relish the idea of working remotely and being away from home and family, especially for such slim odds. I think I would much prefer to be comfortable at home than out chasing rainbows. But I take inspiration from Thomas Edison’s great quotation about finding the right filament for the light bulb: “I haven’t failed — I’ve just found 10,000 that won’t work.”

More news from the bright side though, I am feeling very well although starting the Lonsurf again yesterday hit me with a deep fatigue that only hours and hours of extra sleep could make any better. I’ve also been able to sort out over a few cycles of treatment, that Lonsurf gives me constant low-grade headaches and a little stomach upset. It also raises blood pressure but with the changes in my diet my blood pressure has kept itself quite low (113/63), so it hasn’t been very noticeable.

In my weeks off I am feeling great, in some ways better than ever, and I’ve been delighting in the opportunity to get out of town and see more stuff that’s nearby. I am so looking forward to taking our train ride across the American Southwest next month. I plan on posting lots of photos and thoughts during the journey!

Here are some of the things I’ve been doing lately, that have kept me too busy to update the blog. Some of this stuff was busy work like preparing my taxes and fixing plumbing leaks, but a lot of it was very exciting and memorable.

March 16, 2024 — Ocean Isle Beach, Myrtle Beach, and Southport North Carolina.

We had an unseasonably warm weekend and although on Friday it poured down rain, I took a half day off work and went with my wife down to the Myrtle Beach area, where we got to have dinner with my niece BG and her husband BR. It had been way too long since we’ve gotten to see each other, owing to her mom getting a bad case of west-coast COVID and having to wave me off a weekend trip where everyone would have been up in Virginia at the same time.

We met at a nice Japanese restaurant called Ichiban and did some catching up. I am always super proud of BG and BR and I admire their drive and refreshing pragmatism.

We stayed overnight in Ocean Isle Beach at my sister’s beach house, where I always get the deepest, most refreshing sleep I can ever remember. I’m not sure why that’s the case, but it is quiet and peaceful there.

Though I suppose it wasn’t so peaceful recently at the roundabout in the middle of town — in North Carolina, drivers just can’t get the hang of roundabouts, and they tend to drive straight through them at warp-speed. This must have been a spectacular accident:

We had breakfast the next day at Sarah’s Kitchen, a very nice family-owned restaurant where the service is always friendly and the food is very good and expertly prepared. I love the cheerful blue walls and the decor. Then we went back to Myrtle Beach so that my wife could experience the Gay Dolphin Gift Cove, and she balked at taking the Sky Wheel because of the claustrophobic enclosed pods and long periods of time you have to wait for it to load and unload passengers.

We walked around the boardwalk area and took in some sights but we had to get to our next planned stop quickly, so we cut the visit short and drove all the way to Southport NC to visit the North Carolina Maritime Museum there. North Carolina has three maritime museums and I aim to see every one of them. Last year for my birthday I went to Beaufort NC to see the artifacts from the Queen Anne’s Revenge. As soon as it opens back up, I want to go to Cape Hatteras NC and see the third maritime museum, the Graveyard of the Atlantic Museum.

After the museum we walked around Southport. What a beautiful coastal town! Lots of people walking, everyone was friendly.

There was a wedding about to happen at the community center nearby, the weather was warm, and the local pub was offering St. Patrick’s Day pints of Guinness on draft– which I couldn’t have because… you know, cancer in my liver and all. Sigh.

We built up an appetite and ate at Oliver’s on the Cape Fear, which was almost entirely reserved but they found us a high-top table where we could enjoy an early dinner.

Then we went to see the Oak Island Lighthouse at sunset. It was closed so we couldn’t go inside and climb up, but it was a sight to see and we got a bit of walking in, over to the beach, though the walk was cut a bit short by the urgency of my needing to go somewhere and poop — having half a colon can be really inconvenient that way.

We had a nice drive home to get my wife home in time for sleep and work the next day, and I got a free Sunday to work on taxes and get those out of the way. I also got to visit with Grandpa J and Grandma K, taste her Irish Soda Bread (fantastic!), and help them e-file their taxes too. Nice to check those things off!

The unexpected highlight of my day was dropping in on our friend SC who does energy work, and getting a treatment that absolutely neutralized my headache and abdominal discomfort, and I swear I felt lighter on my feet and bouncier in my steps afterward. Many heartfelt thanks to SC!

March 12, 2024 – Neil deGrasse Tyson

My wife and I went to dinner with my dear friend and Lunch Bunch member JC and her husband SG, then went together to see Neil deGrasse Tyson give a talk on Astronomy Bizarre at the Durham Performing Arts Center. It was informative, funny, and entertaining especially in the way that he helpfully explained for the young children how we used to have to turn a crank to open a car window, how we had to look up information in books in libraries, and so on.

March 9, 2024 – APA 8-ball Jack & Jill Scotch Doubles Tournament

I haven’t been in a pool tournament except for city finals, since my cancer diagnosis. I got invited by AM on my pool league team, to play in this tournament with her. Since I am rank 4 but play like a 5, and she is a rank 3 that plays like a 4, we figured we would give them a little bit of hell. I’d never played in a Scotch Doubles tournament so I was deathly afraid of fouling and playing in the wrong order, but in Scotch Doubles you have to take a shot, then your partner takes a shot, and it goes back to you. The players’ ranks added together can’t exceed 10, and as a 7 we were at the lowest ranking in the tournament. This gave us a little handicap advantage.

There were 64 teams and by crappy luck, the first team we played were two 5’s that ended up winning first place in the whole tournament, $2500, and a trip to the World Pool Championships in Las Vegas NV. The matches were very close but the other team beat us. It was a good showing, so we went to the loser bracket (modified double-elimination format), and played the other losing teams hoping to get back in the running. From then on we did really well, winning the second and third rounds, then finally losing in the fourth round in the game that would have brought us back into the fold with the winning bracket. I never thought we would do so well — placing like somewhere in the 20s out of 64 — but my teammate and I played our absolute best and worked really remarkably well together.

The next day I went up to Richmond VA to spend the day hanging out with my college friend RT, eating Cuban food, getting refills on my Penzey’s spices, and going to the Roosevelt for an amazing dinner.

February 27, 2024 – The Amazing Turtle Quilt

Today I got a package in the mail from cousin Diane. It contained the most beautiful turtle quilt made for me by her sister-in-law. Snif. I am so deeply touched by this gift — Niawen’kó:wa!

Since starting to take blood thinners and losing weight on a keto-inspired diet, I have been shivering with cold nearly all winter. It is so comfy to curl up on my recliner with this quilt keeping me warm.

February 20-23, 2024 – Sister Birthday Visit

My sister came into town for a quilting conference with her friend T, and I took us all to a nice Ramen dinner for her birthday celebration. The food was very good and I had ramen with kale noodles to lower the carbs. Not bad!

Some days later I came down with Norovirus and spent 4 days being deathly ill, ejecting liquids from everywhere… I don’t even remember Tuesday, I spent the whole day sleeping. I was super dehydrated, burst the blood vessels in my eyes while throwing up and looked a horrible mess for weeks afterward.

February 19 – Chemotherapy #36

Took Lonsurf for the first week, and the oncologists asked me to hold off on it for a couple days in the second week due to the norovirus infection, then I resumed it. We put off the Bevacizumab. The good news was that my platelets recovered to 150 right after this! Wish I could work out why. Some say it was the incredible amounts of sleep. Others say it was the heavenly milkshake I had, when I couldn’t keep anything else down but bone broth.

February 17 — Touring the USS Wisconsin

I had an amazing time leaving town on a solo trip to Norfolk VA, where I visited the Nautica museum (mostly closed), and had a guided tour of the command and control areas of the USS Wisconsin.

What an incredible tour! The ship is like a time capsule and your admission lets you wander practically everywhere on board for hours and hours. I took 17,600 steps and most of them seemed like they were up and down very steep ladders.

It was amazing, this ship was a portable city with guns that could shoot shells that weighed like Volkswagen Beetles for several miles and still hit within a 20 yard radius of the target.

I stopped in Williamsburg on my way home to pick up some Cheese Shop dressing and walk up and down DOG street, and around the campus.

February 3-4, 2024 — Winston-Salem, Pilot Mountain, and Mount Airy

My wife and I took some days away and got a hotel in Winston-Salem as a home base for some fun local tourism.

We started with dinner in Greensboro at Crafted: The Art of the Taco, where we found a great neon sign.

We stayed overnight in Winston-Salem and got a hotel that had an indoor pool. We tried to swim in it, but being on blood thinners everything is super cold to me, and it was too painfully cold to enjoy in the winter.

The next morning we drove to Pilot Mountain and spent some time appreciating the view from the top.

Then we continued on to Mount Airy, where we visited the Andy Griffith museum, and walked up and down the main street, stopping in some shops along the way.

We returned to Winston-Salem where we went to dinner at a fantastic restaurant called Mojito Latin Soul Food. I thoroughly enjoyed the atmosphere, decor, and the quality of the food. I wish this restaurant were in my own town, I would go there a lot.

We woke up the next morning and had breakfast near the hotel at a very nice breakfast spot. People in Winston-Salem were incredibly nice and helpful. I just got a wonderful vibe from every place we visited in town.

Next, we went to visit Körner’s Folly in Kernersville NC. Our town of Durham NC owes some of the popularity of Bull Durham to the efforts of Jule Gilmer Körner in marketing it. This magnificent and quirky 22-room home was a showcase for his furniture and design business, and is a unique and worthwhile tourist destination.

Next we went to see the largest chest of drawers in the world in High Point, NC.

We followed up by visiting Lydia’s haunted bridge in Jamestown, NC.

January 27, 2024 – USS Monitor

Feeling energetic on a weekend break from the Lonsurf chemotherapy, I visited the USS Monitor exhibit at the Newport News Mariner’s Museum. It was nice to poke through the exhibit at my own speed and study the artifacts there. What was amazing was how many reproductions the Newport News Shipyard produced for the exhibit — miniature working models of the engine and the CSS Virginia engine, a scale model of the USS Monitor parked outside, and various engine models from other ships in the miniatures exhibit.

I had no idea how luxurious the interior of the USS Monitor was, I guess I assumed it was an all-business-at-the-pointy-end sort of ship. There are cabin reproductions in the museum and it was very nice inside.

January 22, 2024 – Chemotherapy #35

Started a two-week cycle of Lonsurf on for five days, off for two, then on for five in week two. I noticed a lot of fatigue and the first few doses gave me upset stomach and nausea but things equalized and I felt pretty normal, though fatigued, for the rest of the treatment. The last day of treatment upset my stomach for more than a day, I was glad for the weekend off.