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 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.
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:
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.
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!