Running Short on Options (Chemotherapy #39)

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.

Mom, Dad and Both Kids together like old times

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:

Delicious Wild-Caught Alaskan Suitcase 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.

Princess Daisy Moonbeam G.

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.

Posing with my lovely wife on a bench and realizing the race is never going to start.

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!

We got a visit from the Bulls’ awesome and beloved mascot, Wool E. Bull.

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!

New Scan… New Plan (Chemotherapy #34)

It has now been a concerningly long time since I have had chemotherapy. The last treatment was #34 on November 28, right after Thanksgiving. Chemotherapy was aborted on December 19 due to low platelets, and also aborted today on January 9, also due to low platelets and a change of plan. Though I feel amazing after 6 weeks with no treatment, I have been quite worried about the cancer being able to progress unchecked for all of this time.

Adding to my stress about cancer, I realize I have been depressed: mourning the death of my friend LD and worried about the deterioration of my 85-year-old friend MG, both Lunch Bunch friends. In addition, December 10 marks the anniversary of our daughter Maggie’s death, and December 16 is the anniversary of my brother-in-law JD’s passing. The combination of all these profound feelings of loss has been a little emotionally overwhelming for me, and I find myself with tears in my eyes at the most unexpected moments.

I’m going to describe what happened since the last post, and I am going to organize this post in descending order by date so that the most current updates are at the top, in case you find yourself in a TLDR sort of situation.

Today, January 9. I had a CT scan yesterday that went quite smoothly. They accessed my Bard PowerPort and used it to inject a contrast dye that allows the CT scan to better distinguish cancer tumors and other anatomy. The scan took about three little passes and then they de-accessed my port and sent me on my way. I can always tell when the scan results aren’t very good, as they don’t appear on my MyChart page until after I’ve talked to a doctor. So I had some trouble sleeping last night. I found a neat YouTube video with relaxing music and frequencies, that turns into rainstorm sounds. I fell almost immediately into a good deep sleep and besides being a warm platform and lap for the cats to fight over, I woke up around 3am with my head lolled to one side, a sore neck, and a good hankering for my nice warm bed.

We woke up early this dreary, drizzly morning and went to the cancer center, and there was a whole lot of traffic backed up because everyone seemed to be waiting for the valet parking. To get to my lab appointment on time, I leapt out of the car and walked a good way past all the stopped cars in the traffic jam. There is no substitute for feeling good, refreshed, and not fatigued due to any recent chemotherapy, so my walk was brisk and I was not even winded.

They sprung a urinalysis on me and after me staring at a cup in the bathroom for about 10 minutes, they gave up and took me to get my port accessed and blood work drawn for the Carcinoembryonic Antigen (CEA), Complete Blood Count (CBC) and Comprehensive Metabolic Profile (CMP) tests. They gave me a urine collection container to go and sent me up to my oncology appointment.

I got to see the PA, EMD, who I always enjoy seeing because she is very attentive to my symptoms and side effects. I have been having some intense bursts of right upper quadrant pain, particularly when I overdo things with my core muscles and don’t rest enough, but it concerns me so I mentioned it. In December I had been having lots of nosebleeds due to low platelets, but it seems to have resolved and I get an occasional pinkish color in my ever-present runny nose. I got my lab results and my platelets were 47 — not high enough to meet the threshold of 50 and certainly not the low-normal value of 150.

My Carcinoembryonic Antigen (CEA) result, which shows the rate of cancer growth, is now 45% higher at 34.4, up from 23.7 on 12/19/2023:

EMD then discussed the CT scan results, which were about as expected after 6 weeks of no chemotherapy. I have three lesions in my liver since the radiation treatment of the last one early in 2023. There is a new one in the right hepatic lobe, that is 1cm:

There is an existing lesion in the left hepatic lobe, that has grown 60% from 1cm to 1.6cm:

There is an existing lesion in the back of the right hepatic lobe measuring 3.2×2.2cm, size unchanged.

There is a 1cm peritoneal nodule on the abdominal wall of my left upper quadrant that has not grown, but there is a new nodule attached to the outside of the colon in the left lower quadrant that is 0.7cm that is most probably a diverticulum. There is a small amount of ascites (free abdominal fluid), a little more than in the last scan but not much. We want to avoid the ascites getting worse as much as possible, as it would have to be drained when a lot of fluid collects, but alas, this is the fate of people with peritoneal tumors that leak lymphatic fluid.

New Plan: So now that the efficacy of the FOLFIRI treatment is wearing off (mostly I suppose by skipping so many weeks because it’s knocking the crap out of my bone marrow), there is a new plan. In two weeks we will change to using the same Bevacizumab I’ve been using with FOLFIRI, administered every 2 weeks, plus an oral chemo agent called Trifluridine+Tipiracil, that I will take 5x per week for 2 weeks, then will have 2 weeks off. This seems much better to me since I have read that daily oral chemo keeps the pressure on the tumors and stresses them more. It sounds like this regimen has a lot fewer side effects than the FOLFIRI, and I certainly will not miss the 4-5 days of caustic liquid poops that are literally a pain in the ass.

Finally, we went to the infusion clinic and had to wait for a while for a room with a bed so that they could change out the glycerin in my HAI pump. This involves a nurse sticking a big needle into my abdomen and down into the HAI pump, extracting the old glycerin, flushing it with saline, then adding a new 30ml of glycerin that will keep me filled for the next 12 weeks. The nurse was training to be able to do the procedure on her own, so she was accompanied by nurse O., who has expertly accessed my HAI pump many times in the past. It was nice to see nurse O for the first time in a while, she deserves a lot of praise for her skill and professionalism. The new nurse did an amazing job of putting the needle into my HAI pump: she did it very smoothly without rocking it which causes a needless amount of discomfort. If I had gold stars on me to give, she would have earned one that day.

After they released us from the infusion clinic, we went outside, where a huge thunderstorm was rolling in and flickering the power for half the night, while my cell phone chimed with warning after warning from the National Weather Service to beware of flooding, tornadoes, and falling trees.

January 3-6. I took a trip to Florida and met my parents down there, to visit our old family friend LP, who is 82 years old and in the midst of his own battle with cancer. He has been my cancer buddy for a while, we were diagnosed with different cancers at about the same time, and we’ve both had quite a struggle, tough chemotherapy, surgeries, and it has been wonderful for me and my mental state to have our mutual support and encouragement.

It was a wonderful few days off, and I arranged it so I arrived at the airport and went to pick up my reserved Toyota Camry. The woman at the counter asked how many of us there would be, and upgraded me to a roomier car, which was a peppy Land Yacht of a Dodge Charger, in a fetching color:

I got a fast car. Is it fast enough so we can fly away?

I waited in the Cell Phone parking lot and picked up my parents when they arrived. We drove to LP’s house and had a wonderful, lovely visit. I got to go to the cancer center with LP for his labs and chemotherapy infusion. It seems like I spend a lot of time in Cancer Centers, so I was impressed at how classy this one was, with custom chairs and a number of nice spaces for gathering and waiting.

Back at LP’s house, we got to listen to my Dad and LP talking about their old war stories, and I had some late-night heart-to-heart honest chats with LP about how things are going for both of us.

LP’s Cancer Center in Florida

The weather, though not warm, was more tolerable than it was back home, and I captured a photo of Mrs. P (BP) feeing the birds with my Dad:

Dad and BP feeding birds at the lake right behind their house.

LP was our neighbor when we lived for three years in Arizona, when I was in Kindergarten to 2nd grade. He was very tall and had an imposing figure, and a booming voice that scared me at first but he always had a heart of gold. I remember he used to play with us, letting us kids crawl all over him like a jungle gym, and he would crawl across the floor with us all fighting to stay on top.

It was great to spend a little time with my old best friend from Kindergarten, LP-III (technically, LP is LP-Jr.). We got to meet his wife, SP, and their son and daughter, who were delightful and well-mannered young adults.

LP-III and I got into all kinds of trouble as kids, and anyone who knows me well has heard one or two stories, like the one about the time LP-III and I were throwing big rocks across a road to get them all the way to the other side, and some idiot Gunnery Sergeant drove his car into our rocks and broke a window and muffler when they collided with our rocks. The guy was scary and a giant tall, angry looking man. I turned and booked it, running to the freedom of a life on the lam, and LP-III sat frozen to the spot and gave the guy his name and my phone number. My mother got a call about two boys wrecking cars with rocks and knew exactly who the mysterious fugitive was.

To be honest, a lot of the trouble we got into could be traced back to me being a bad influence.

I also got to see LP’s daughter BNP, who is now a successful and high-powered executive.

LP’s kindness and sense of humor when I was an impressionable little kid, changed something about my mental DNA. Pretty much ever since then, I have tried to live with the kind of loyalty, friendship, and compassion that he showed every day. To my friends I refer to him as my “other Dad” which is probably confusing but I learned a huge amount from LP, and continue to learn from him even now.

How do you deal with a fatal cancer diagnosis? With love and laughter, living the biggest life you can live, every day of your life because tomorrow is not promised… even if you don’t have a fatal disease. I suppose like they say, life is a terminal condition. Make the most of it.

In that vein, I stepped out and spent a little time visiting with my friend DH, his wife and two daughters. He used to own the Brown’s Billiards pool hall where I got my start playing APA league games, until the business was shuttered by sweepstakes companies offering a better deal to the landlords that owned the space. So DH packed up, moved to Florida, and purchased the APA franchise in that area, so now he is the league operator. In memory of DH and Brown’s Billiards, my pool team still uses the name Brown’s Bombers.

December 30-January 1. I spent New Year’s Eve on an annual tradition getting a VRBO rental with my pool friends in Asheville NC. We didn’t do much local tourism, we just stayed in, played pool, and had many long chats and relaxed for a couple days. My friends made dinners and lunches and I just had to show up and be present. I had a wonderful time.

December 28. A special treat! My friend MB was in town visiting his daughter and me and my lovely wife got to have dinner with MB and his wife at Nantucket Grill. MB was my boss when I first moved to this area, and we started a business together that operated profitably for many years. He has always been a fun, engaging and refreshingly honest person and his including me in lunches and social events so shortly after I moved here, helped me to come out of my introvert-cave and engage more with people.

Me and MB at Nantucket Grill for Dinner

December 26-27. We drove up for an overnight trip to northern VA to visit my sister and parents for Christmas. Our car threw a check engine light and the coils and spark plugs had to be replaced. I also was able to have lunch at a fancy French restaurant called Mon Ami Gabi in Reston with my high school friend JK. Sadly, this restaurant closed at the end of the year after 15 years in that location.

December 25 we celebrated Christmas morning at home with all our children, and we had an evening dinner with my in-laws, Grandma K and Grandpa J, in their home about 45 minutes away.

As a Christmas treat, my wife made me keto peanut butter cookies using almond flour, with homemade chocolate kisses made with Swerve sugar substitute. Cookies have been something I haven’t been able to enjoy since going on a Keto diet.

December 23. We got an invitation to dinner at the Angus Barn with my friend JC and her husband S for his birthday, but he got sick and they had to cancel, so we used their reservation to have a nice date night. The food was incredible, I had a 22-ounce prime rib and my wife got a filet mignon.

We took a photo together but I look kind of creepy since in the first photo my wife had her eyes closed, so in this one I was showing her how to keep her eyes wide open for the shot, and I over-did it a little. So now I look like I just came from the Creepy Valley. Speaking of over-doing it, check out all of the Angus Barn Christmas decorations!

December 21-23. Our college friend AS took a train down from way up north so that she could visit for a few days. I took some time off work and we hung out, walking in Duke Gardens and going to fun restaurants which without chemotherapy was nice, I could have spicy food and not pay a gastrointestinal price for it!

December 19. My platelet counts were at 44, so the FOLFIRI+BEV chemotherapy was cancelled to give my body time to rebuild and recover.

December 16. The whole family traveled up to northern Virginia to celebrate my Dad’s 80th birthday! We had Bea Marlow cake that my Dad made for himself from memory, he’s extremely well-practiced at it. It’s the first sugar I had in a very long while. I didn’t have very much, but sugar sure activates your cravings for more. I felt like a drug addict wanting more. My father doesn’t like a lot of fuss made over him, but I think for this milestone birthday especially after a recent heart surgery, it seemed to warm his heart with the support of all his family.

December 8. After suffering more than a week of nosebleeds that leaked like a faucet, my oncologists set up an appointment with an ENT who cauterized my nasal passages. I probably lost a terrible amount of platelets that week. After only a couple days, the bleeding was down to a little pink staining when I wiped my nose, which is so much better than what it was.

December 2-6. I came down with a cold that gave me a fever, body aches, dry cough, headache, bad nosebleeds, and chills. I went to my primary care doctor and after some tests for COVID and flu, it turned out I had the flu so they started me on Tamiflu and after a day or so I started feeling better, but continued to have a much milder version of the same symptoms for quite a few days.

November 28. Chemotherapy #34. Blood work was okay, CEA was a little more elevated but not by a whole lot. I got the FOLFIRI+BEV regimen, both barrels at full strength. I had a horrible headache during and after chemo. The steroid Dexamethasone gave me only 3 hours of sleep that night, I spent the night staring at the ceiling listening to my wife’s breathing, and Elsie the cat wanted hours and hours of pets while I was obviously awake.

November 27. Date night at Parizade! My wife and I went to one of my favorite restaurants, Parizade in Durham NC. I had the amazing pork chop, which was incredibly tender and juicy, and she had the lamb chops.

November 24. Drove up for an overnight trip to northern Virginia for another Thanksgiving dinner that couldn’t be beat. As always, it was nice to have the whole family together.

November 23. The family celebrated Thanksgiving at my in-laws’ place, and my oldest son IG made the Indian Wedding Hash with my supervision and recipe. It turned out great with a few “foodie” modifications we made to the recipe.

November 19. Got to visit my friend B and her family near Fayetteville. I’ve known her for probably 20 years, and she has the sweetest husband G and daughter P. I got a wonderful picture drawn by P, and we got to catch up. My new year’s resolution is to visit B more often. Our visits are carefree and B is one of the few people in my life who can recharge my energy… I am secretly an introvert but I love people and visiting friends and family, but it is a drain on my energy to be with most people. B is a happy exception to the rule. B cooked me a fantastic dinner of Linguini alla Boscaiola from a recipe I brought, and it turned out great!

November 12. I took a day trip to Richmond to visit my friend RT for his birthday. We went out to Kuba Kuba for lunch, then to the Roosevelt for an amazing dinner! I had seared Ahi tuna:

That’s about all I have to catch up on for now!

Losing a Friend and Gaining a Family Member

My emotions are still a little too raw to be writing this post, but perhaps it will be one of those cathartic things that will make me feel better in the end — but somehow I doubt that I will feel better anytime soon.  But at least you, the reader, will have a little insight into my life’s ups and downs, which can’t be a bad thing.

I have a friend LB who is one of my Lunch Bunch friends, and she is one of my dearest favorite people.  I have known her for 13 years, ever since our Lunch Bunch circle first formed.  Our Lunch Bunch started when my friend and coworker SG went by himself to one of our favorite restaurants for lunch.  I had recently changed jobs and wasn’t available that day, so he went by himself.  Back then, the restaurant only had 9 indoor tables: one that seated two people, six that seated four people, and two that seated 8 people.  The place was packed and there was a wait that would have exceeded his allotted lunch hour.  He was waiting patiently in line to be seated, and two very kind gentlemen (MG, 73, and HC, 70), waved him over to their table and told him he was welcome to sit and order lunch and participate in their conversation–or not, depending on his preference.  Knowing SG, he probably wasn’t too comfortable with this offer, but it might have been the only way to quickly get lunch, so he accepted.  He had a delightful lunch and and engaging conversation, and at the end of the meal MG and HC invited him to join them again anytime — they always came on the same day at the same time.

Some weeks later, SG and I planned to eat lunch together at the restaurant, but he wanted me to meet these gentlemen if they were still there.  We arrived, SG introduced me to MG and HC and we all sat down and shared a meal together.  And thus, the Lunch Bunch was born (though it didn’t have a name yet).

The restaurant had a waitress named LB who was very friendly and kind, though she had an interesting but endearing quirk: she was kind of clumsy and sometimes she dropped things and you would hear a crash in the kitchen followed by what sounded like harsh foreign words from the owner of the restaurant.  The owner couldn’t fire her though: she was married to his son and she worked there for free, and all her tips were given directly to her husband though she did get free meals when things slowed down.

One day, when we all piled in for lunch together, LB gave the Lunch Bunch its name. She said, “the Lunch Bunch is here!”  She was always a lot of fun to talk to, so several times we invited her to come and join us if she ever wasn’t working that day.  I think eventually the restaurant ended up hiring enough wait staff that she only had to come in during catastrophes or days of poor planning, and she started joining us at lunch and became part of our circle until she and the owner’s son got divorced and she was banned from the restaurant.  She also dropped off the radar for a while after the divorce because her life was complicated, I suppose.  We stayed in touch on Facebook, and now and then I would meet her for lunch at other local restaurants and catch up.

LB was always generous with her time. She was an outgoing, supportive friend and had a great big heart. When our Lunch Bunch friend MG had his knee replacement surgery, his son who lives in town didn’t feel like taking him the hospital, or waiting for him to get through surgery, or even visiting him afterward. LB immediately volunteered to take him to the hospital, she waited for him to get out of surgery, and she stayed by his bedside all night until he was discharged the next day, and she drove him home.  Back in February, when my wife had to be at work during some of the radiation treatments on my liver, LB woke up at 5:00 am for four straight days, drove 45 minutes to pick me up and take me to the cancer center.  Her friends and family could always count on her to drop everything to help them whenever they were in need, either by transporting them somewhere, spending time listening to their problems, or by bringing them delicious homemade food.

She was like a Disney princess because wild animals like squirrels, deer, and bunny rabbits would come up to her and let her touch them — even weird varmints like lizards, bumblebees, and butterflies, and moths got in on the action.  And so did a large number of people: she had more friends and acquaintances than I could even count.  I am kind of an introvert at heart so I prefer to have a small number of very good friends instead of hundreds of more distant friends, because even though I love being with people when I feel like it, all my energy is revitalized by being alone and reading, or thinking, or listening to music, or woodworking, or just daydreaming (about ice cream mostly).

When I got diagnosed with colon cancer, she texted me often, tracked my progress very closely, listened to me complaining about the worst times, and took me to lunches that my stomach could tolerate after chemotherapy.  She encouraged me to be grateful for every moment, to live every day to its fullest, and she told me never to worry about the outcome.  Life is a journey best taken one small step at a time.  I was going to be just fine.

I remember when her dog Layla, a pit mix, had to be put down, she talked about her beautiful dog’s life from puppyhood to the grave. Layla was her companion, her family, and her protector and after Layla died she was so unconsolably sad. And she began to get very anxious about living alone without Layla’s protection since she had several creepy ex-boyfriends who continued to stalk her even years later.

As generous as she was giving her time to so many people, she was petrified of being a burden to anyone.  She was fiercely independent and insisted on never needing help.  But she always trusted me since, as she said, Layla always stood guard between her and people she should be wary of, and Layla always took an instant liking to me, which was very rare.  So whenever LB’s cat Elsie needed to be fed while she was out of town with family or friends, she gifted me with her trust and her house key–and a set of unbelievably specific instructions for feeding, brushing, and caring for Elsie (and also information about caring for her plants).

Then this year at age 40, she got a uterine cancer diagnosis and shocked me by saying she wasn’t going to get treatment for it, she was just going to let it take her.  She was anxious, fearful, and suspicious of doctors and hated needle sticks and the very idea of surgery, even though she had a better than 95% chance of survival. I was shocked and saddened by this decision, and I think I was a royal pain in the ass about getting her to have a second opinion and seek more information about treatment.

I work hard to silence all judgment when I am with my friends and family.  I focus on always giving unconditional love, and it was personally very hard for me to support her decision without my own feelings getting in the way: here I was, struggling and suffering for the smallest shot at something like a 12% chance of cure, and her just giving up.  It was painful for me to contemplate her choice, and honestly it will always haunt me.  But her life was harder than I can even wrap my head around.  A lot of people took advantage of her generosity and kindness, and she suffered a lot of abuse, trauma, and betrayal from the people she loved the most.  She didn’t want to die, but she also wasn’t all that excited about getting dumped on even more in life.  In her darker moments, she even seemed sort of relieved at the thought of wrapping things up at this point.

Then she started having panic attacks and being afraid to go outside.  I started bringing her food and cat food for Elsie when she was too anxious to leave the house. Then her HVAC system caught fire and nearly burned her house down, and she was anxious about being indoors too even though it got completely replaced with a brand new, safer HVAC system.  Her doctors prescribed anxiety meds that made her angry, or gave her thoughts of suicidal ideation.  She started going for days without sleep and hallucinating.  After two stints in rehab for alcoholism years ago, she admitted she had started drinking again.

Alcohol is a scary poison: she would drink it to fall asleep after days of insomnia but I warned her often that alcohol, especially in large doses, interrupts good sleep, prevents REM sleep and deep sleep, and over time can do permanent damage.  She pretty much ignored all that, and soon her drinking quickly led to blackouts, memory loss, mood swings, and mixing SSRIs and sleeping pills with alcohol.  She could barely walk in a straight line, drinking or sober. She started getting paranoid. An ex-boyfriend from decades ago has been driving by her house ever since they broke up, and he recently knocked on the door begging to talk, and she threatened to call the police if he didn’t leave.  She changed her locks and gave me a new key, “just in case.”  Just in case… what? She started alienating herself from friends and family, being argumentative or sometimes just texting and not making any coherent sense at all.  She couldn’t hold down food if she ate it at all. She lost all motivation to succeed, improve, or even to straighten up around the house. She was complaining of pain in her legs that felt like her muscles tearing off the bone.  I begged her to make doctor appointments with her primary care provider, a neurologist, and an orthopedist.  I suggested specific doctors and specialist. I would even take her there if she was anxious about driving. She kept canceling the appointments, anxious as she was about doctors (and it turns out, not wanting me to know too much about her medical status). She also didn’t like how doctors blamed every little thing on her alcoholism (which, to be completely honest, was the root cause of a great many issues, starting with her being born with Fetal Alcohol Syndrome and decades of drinking leading to Wernicke-Korsakoff syndrome.

For the first time ever, we were getting in arguments as she misinterpreted my attempts to understand her increasingly cryptic texts (often sent in the wee hours of the morning).  After getting angry at me, she would stop reaching out for a few days, then returned to apologize.  When she did that, she sounded completely normal, like a dark cloud had passed.  She was struggling hard to change and cut back, and to leave the house. She was making plans to attend a concert, she went out for groceries, she reached out to friends and family.  She reported things were going so much better except for the leg pain.

Last week on Monday I had a CT scan and she texted me at 4:17pm wanting to hear the results, but the radiology report wouldn’t be available until Tuesday before I had chemo.  I was feeling sick that day — I took the day off work to sleep when I wasn’t being CT scanned and filled with iodine contrast — and being asleep I didn’t respond for a few hours.  I didn’t get a response which was weird, she always responds immediately even if lately it’s just nonsense.

Tuesday morning at 8:00am I went to the Cancer Center for my oncology visit and chemotherapy infusion, and tried to text and get any kind of response. Silence.  I called, even at 3:00am, and it went to voice mail.

Wednesday morning I went in to work, had my regular status meeting with my co-workers, and the worst terrible feeling settled on me and I felt some power, some force saying (not literally), “you must go do a wellness check.”

I took an early lunch and immediately drove the 15 minutes or so to her house, where I found her parents on the doorstep trying to get into the house.  Their key didn’t work, and I explained about the lock-changing and her sort of paranoid thoughts due to the ex-boyfriend thing.  My key worked and got us into the house.  We went through the house, and as we got to the bedroom we found her peacefully lying curled up in blankets in bed.  She was very cold and very dead. There was lividity and no rigor mortis, and later on my guess for the police and paramedics was that she died on Monday between 4:17 pm and 7:17 pm.

I was shaking and crying, I was immediately in shock.  My face felt numb.  My hands felt numb.  Her parents, who I had never met before, were also in shock. They called 911 and we waited for the police to arrive.  We explained everything while the paramedics came and went back to the bedroom. The medical examiner arrived with the forensics team and took pictures of everything.  Her parents and I gathered all medications from everywhere in the house we could find so they could make a record and count the pills in each bottle.  Her father was looking for a suicide note but I told him, there was absolutely no way it was a suicide.  Just days before her mood was improving, her anxiety was lessened, she had hope for the future.

I suspected she had a pulmonary embolism because she was essentially bedridden by the leg pain, and leg pain is often a good indicator of dangerous clots.  Her parents suspected alcohol and medications, and told me a great deal about her history I didn’t know (and really, I didn’t want to know that my friend was so troubled in life with relationships, and family drama).

I kept looking for her cat Elsie but she was nowhere to be found, so I assumed she had been let outside before LB died, but it seemed unlikely because the cat only wanted to be outside for a few minutes to scratch at the dirt and smell everything before begging to come back inside.  So I just focused on being there for her family and helping them grieve, and trying to hold my own self together.  The lead police officer was an incredibly compassionate, sympathetic person and I appreciated his calm demeanor and gentle way of asking questions he needed the answers to.  Soon the medical examiner told the family he was going to put her in a body bag and put her in a nondescript white van parked on the street.  Her parents went on the back porch because they didn’t want to watch, but I waited for them to put her on the gurney and I walked them out to the van.  For some reason I just felt like she needed someone to walk with her body and spirit.  I kept thinking about how fearful she was of needles and surgery, and the indignity of the autopsy that was to come.  She would not have wanted it that way.

When she was gone and the police excused themselves to leave, I stayed and chatted with her parents who were just reviewing all the puzzle pieces in their head, and I was adding puzzle pieces of my own until we got to a sort of sense of being settled.  The cat Elsie showed herself and she was absolutely pitiful.  Her tail was puffed out like a wire brush, she was crying and coughing, shaking and miserable after almost two days not being fed and having to see her mommy’s body.  I have never seen an animal grieve before, but it was obvious that Elsie was suffering a deep and terrible grief.  LB’s parents said they have no idea what to do with her, since one of their cats used to live here but terrorized Elsie and so they took that cat into their own family.

I remembered that LB had been impressed that her cat really liked me and let me pet her, when she was often quite triggered by men due to abuse she suffered in the past.  LB made me promise at the start of her anxiety troubles that if she ever died, I would adopt Elsie.  I did promise that, but I knew in my heart of hearts that it was much more likely statistically, that I would be the one who died first.  But I’ve grown to love Elsie and her little quirks.  She is adorable and just very, horribly cute.

I explained LB’s wishes to her parents and they were very relieved.  We decided to leave Elsie in the empty house for a couple of days and they would feed and check on her, and when my chemo was taken down I could text them and pick up the cat.

When I came back for Elsie, they had found her cat carrier and after giving me a status update on their obituary writing and funeral preparations, we loaded her into the carrier.  They gave me LB’s jacket so Elsie would have her smell.

Elsie has been adjusting to life in a new home with two big male cats — and Elsie is so delicate and small. But she grew up with a pit bull mix and is pretty fearless about enforcing her boundaries. She is also very curious about our family and the children, having spent much of her life with only one or two adults. Her favorite activity seems to be knocking things off all the dressers and end-tables, and she is quite fond of waking me up at 3am wanting tons and tons of pets, but that isn’t so horrible. Elsie is now surrounded with love and doing well in our family.

Overscheduled! (Chemo #32)

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.

Dad/Grandpa H. teaching the kids some woodcarving basics

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!

The kids hanging out with Mom/Grandma T.

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).

Eating breakfast at Sarah’s Kitchen in Ocean Isle Beach with my sister SG and brother-in-law JDG

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.

Sandpiper at Ocean Isle Beach

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.

Getting some work done while receiving chemotherapy

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.

A Friend from Halfway Around the World (Chemotherapy #29)

I got a surprise message from one of my oldest friends, M.S.S. I don’t mean that he’s aged, just that we became friends a long, long time ago when I was 11 and he was 10. I had just moved to California and even though all the cliques were already solidly formed, he was super friendly and always eager to make me feel welcome.

Growing up as an Army brat, we moved a lot. I often got in big trouble when I was very young, and I also managed to get my friends in trouble as well. A lot of innocent people followed my lead and we all ended up getting into hot water because of it. I was pretty self-focused and I realized that my best friends were always the people who honestly pointed out the qualities I had that really irritated them, and the ways they wished I could improve. And each time I moved, I would resolve to stop being the person who hurt my friends. What a special opportunity it was to move and meet all new people who didn’t know all my faults and shortcomings. I would just pretend I was a person who didn’t have those faults, and before long they were gone (or lessened), and I felt better about who I was with each big upheaval of a move to another place.

My friend M. was very understated. I don’t remember him ever getting angry with me or lecturing me about my faults. Instead, he led by way of example. He was a bright light in the darkness. I still got him into trouble from time to time, but he had such a warm and caring heart that I really wanted to be like that. And somehow it started a ball rolling that changed me forever. I was also really impatient, and I often would marvel at how serene he was even when frustrated.

So it was very special to get a message from him, and even more special to read the contents: before being deployed overseas, he wanted to fly halfway across the world for a visit. I was overjoyed! I was also pretty humbled that someone would make me the goal of such a long journey.

It had been about ten years since I saw him last, so I was eager to catch up. I picked him up at the airport and we caught up at my house for a while. He found a nice local hotel and arranged to stay there. I felt bad not being able to put him up in luxury but with 5 people in my house and 4 bedrooms, the best accommodation I have to offer is a couch or an easy chair, and those come with two psychotic cats who are hell-bent on rubbing their butts in your face all night long. The kids could give up one of their rooms but it would take a couple weeks of purification rituals to make that a clean and tidy, viable guest room option. Sigh.

On Monday we met my friend H. for lunch at Taco Addicts, one of our favorite taco spots. I love their choriqueso and tacos al pastor, but on my low-carb diet, tortillas were off the menu until I discovered La Banderita’s zero-net-carb street tacos… what a life saver! Anyway, I couldn’t have the choriqueso with carb-y tortilla chips but I wanted M. to try it, and he asked the server if they could make chicharrones, and they were perfect with choriqueso. So now that’s an order I make every time. I also found out that M. eats low carb/keto as well, so it made choosing places to eat and dishes that much easier.

I took him to the Sarah P. Duke Gardens on the campus of Duke University. It’s a place where I like to go to de-stress and unwind, surrounded by many beautiful places.

You can’t really come to North Carolina and not visit The Angus Barn, so at the suggestion of my good friend L., I took him to a nice dinner there. They were so accommodating of our dietary limitations, and even made my Caesar salad without croutons! Swoon! I had a 22oz steak (so I would have some leftovers for breakfast), that still makes my knees weak when I think about it.

I took my friend M. to the Turkish restaurant that me and my lunch bunch friends meet at every Wednesday, and we had an excellent meal and my friends really enjoyed visiting with him. It’s rare in general that I have a friend that my other friends get along with. My lunch bunch friends are a good exception to that rule, though, they are very gracious, welcoming, and full of hospitality. Classy folks!

On Tuesday, M. took me to the cancer center for my chemotherapy and met my oncologist, and hung out with me in the infusion clinic. My wife’s job had a staffing crisis due to the death of a beloved co-worker and it was convenient that M. could take me instead. He expertly drove my electric Smart car and I found out he has a Nissan Leaf at home. We just have so many interesting parallels in our lives, like twins separated at… well, age 12 and 13 I guess.

Getting chemo with my old friend

We went for dinner at another of my favorite spots, Guglhupf, and ate outdoors on the terrace. Even though I’m often suffering from an unsettled stomach after getting chemotherapy, this time I was spared the side-effect and felt just fine having dinner. My tummy warned me not to over-do it, so I tried to respect that reminder.

And before too long, it was time to take M. back to the airport for his trip home. His flight to the west coast was on a commercial airline and fairly easy to schedule, but traveling the rest of the way home on military flights sounds like a bit of a dance and orchestration so I felt bad that his journey home would have a lot of stops and long waits. I deeply appreciate the dedication and perspiration it took to make it all the way to my city for a visit. It was worth the world to me though, and I had a long period of comfort and happiness afterward. What an amazing gift of his calming presence! I felt such peace, like everything is going to be okay. Really I can’t thank him enough!