It’s been a long time since I’ve given an update, and chemo #22 happened on January 3, 2023. It was a double-whammy chemo, so my HAI pump got filled with Floxuridine, and I got the FOLFIRI systemic adjuvant therapy at the same time. This cycle had more nausea than usual, not as bad as the last double-whammy which was the worst I’ve had, but still fairly awful for 2 or 3 days. It was helped a lot by the 4mg dexamethasone. I suppose I could go up to the recommended 8mg dexamethasone, but it messes up my blood sugars so much that I carefully balance nausea with sub-orbital sugar spikes.
Since the last update, we had Christmas and a New Year! Christmas was kind of awful since we had to cancel a visit to Virginia to visit my parents and sister. It’s really hard to coordinate a trip with a family of five, where four of us are working and one is in high school. Since many of us had COVID we just couldn’t risk spreading it to our family, especially to my parents who I want to keep safe from this thing.
So we had an unplanned Christmas at home, and it was surprisingly nice. We didn’t plan or shop for a Christmas dinner, so my in-laws took pity on us and brought us half of their Christmas dinner, though we couldn’t share it together because of the COVID. It was a full dinner with Turkey, stuffing, squash casserole, wine (that I couldn’t have), oyster pie, pecan pie, and pumpkin pie. We are so grateful for the effort that it took Grandma K and Grandpa J to feed us.
We were kind of getting a little cabin fever stir crazy being locked down with COVID, though the 2 of 3 children who caught COVID had just been vaccinated and were sick for only a day or two, then they beat it and tested negative very shortly afterward. On Christmas Day I had a Christmas Miracle and finally tested negative for COVID! And again 2 days later. It was so nice to be free!
It was also nice to have some days off from work and just relax and work on projects at the house. One morning I woke up and my wife was cleaning, and I have a sort of happy-marriage unwritten rule that NO ONE CLEANS ALONE. So I spent time straightening things, flattening cardboard boxes, cleaning the counters with bleach wipes, cleaning the cabinet faces with Magic Eraser, and I was trying to clear off the table but clutter on the table is a perpetual problem in my household. Or it might be better to say it’s a perpetual problem in the household mostly due to me. Currently it’s a staging area for my pan lids while I make little racks on the backs of the cabinet doors to store them. As everyone knows, once a little clutter ends up on a surface, it quickly becomes a contagion of clutter and you find yourself quickly overwhelmed.
A couple days after Christmas, now COVID-free, I went to Richmond to visit my college buddy, get some amazing Cuban food, and also have some duck gumbo at the Roosevelt. I can’t tell you how amazing that was.
Then for New Year’s Eve I went to the beach with my pool friends as we often do. I couldn’t go last year because of the cancer, hospitalizations, chemotherapy, and such. So it was nice to get to visit them. Our trip was dampened and cut a bit short though, by our discovering that one of the rooms of our rented place had a recent bedbug infestation and one of our party was bitten up badly enough to require medical attention for the allergic reactions. Fortunately another of our party was an entomologist who had done research on bedbugs, and they were able to carefully inspect all the other rooms and assure us that the rest of us were in the clear. But we also got valuable advice on how to isolate our clothes into bags and then launder them, drying them more than 60 minutes on high. On returning home I isolated my bags and possessions, cleaned everything carefully anyway, and was luckily able to avoid any infestations. Yikes!
I ended up taking Monday January 2nd off work to sanitize all my stuff and have a little vacation from my vacation. And as usual, knowing there was chemotherapy the next day, my stomach was worried and unsettled every time I thought about it. I’m actually getting a little bit better at putting it out of my mind and not getting psychosomatic chemotherapy side-effect feelings before the chemotherapy actually occurs. Sometimes the dread is worse than the actual thing.
On second thought, I take that back. The actual chemotherapy isn’t at all better than the sense of dread.
So on Tuesday the 3rd we were back on the routine, 8:45am at the lab for port access and blood draws. There is one particular port nurse that I’m always happy to see, she is able to access the port completely painlessly and she uses a gel dressing and allergy-free Tegaderm covering to protect the accessed port and its huber needle. When the lab results came through an hour later, my liver enzymes were back in the normal range, AST=32, ALT=39! I can’t believe how resilient my liver is when I was off the HAI chemo for 3 weeks, I am happy that it keeps bouncing back. My platelets are still around 114 (should be >150), hemoglobin 11.5 (should be >13.7), red blood cell count 4.08E12 (should be 4.37E12). I take supplemental iron to help improve this, but it seems to just keep the level steady. My CEA levels tested at 8.8 (was 9.7 last time), so a downward progression is a hopeful sign.
The meeting with my oncologist went well, on the systemic chemo only, I had very little nausea and few side effects. Increasingly I am having mouth sores due to the FOLFIRI, and have to swish around some water with salt and baking soda to get some relief, and avoid acidic foods. Ketchup is the WORST, it is like torture. And in the last week or so I’ve had a sore under the front of my tongue that has been very irritating when I eat. Other than that, I don’t have many complaints.
We had a little breakfast at the medical pavilion’s Panera bread shop, I had a fruit cup and some unsweetened iced tea, and we barely returned to the infusion clinic before we were called in for the infusion. It was a super quick day waiting-room wise.
We had the regular chemo infusion, and while that was infusing, nurse O accessed the HAI pump reservoir and extracted the syrupy glycerine, which takes a while due to its thickness. She filled the pump with Floxuridine, and that concoction also contains dexamethasone, which has caused some higher blood sugars than usual, even though it’s a smallish dose. When the irinotecan infusion was done, I was attached to the 5-fluororacil pump and sent home by about 1pm, which I think is a new record of efficiency.
Wednesday morning I woke up around 4am feeling very nauseous and I took a Zofran immediately and lay in bed for another hour breathing through the urge to throw up, and holding an emesis bag against my chest. But the feeling soon passed, thank heavens for Zofran and how quickly it works, and I got a little bit more rest before having to return to work the next morning. I got another bout of nausea at work around 5pm and took another Zofran, and that was the last I needed for this cycle.
I had more poopy discomfort this cycle, but it was tolerable and though I had about 3 days of bleeding and pain, I got through it okay and was feeling much better by Martin Luther King Day.
Thursday I felt good enough to go to my pool league and I won a 9-ball match against a level 3 player (I am a level 4). It was really fun to play and see the team again, and get some practice for next weekend’s 9-ball city tournament.
Friday January 13 was a super weird day, it seemed like everything was breaking and going wrong. At work, Windows Defender decided to uninstall a bunch of software from my coworkers’ machines, which caused a bit of mayhem. I ended up taking a half day off because my wife had some chest pains that we went to the emergency room to have looked into. Luckily it didn’t end up being cardiac related, which we were worried about because we’ve repeatedly read that people who came down with COVID have had heart issues afterwards. Thankfully she is feeling mostly better, and will have some follow-up visits this week to investigate further. Keeping my fingers crossed!
Me and the family drove up to Virginia and had a belated Christmas with my parents, my sister and brother-in-law, my niece and her fiancé. On Sunday we had egg quesadillas for breakfast, opened presents together, then I went to church with my Mom.
I was thrilled with the new renovations to their church, it looks beautiful, much better than before with a new altar and the addition of Joseph and Mary to either side of the crucifix. Then we returned home and I made Indian Wedding Hash for our belated Christmas dinner. My father made a spiral ham, my sister threw together appetizers like shrimp scampi and pigs in a blanket, a vegetable tray and olives, charcuterie and cheese. Then she whipped up about several amazing side dishes like bacon-wrapped asparagus (pre-prepped by my mother before we arrived), riced cauliflower with mushrooms, Watergate salad, corn custard, carrot casserole. We were all taking orders and direction from my mother, since we didn’t want her standing too much and doing the whole thing. I love when I get to cook with my sister, I often forget that we always make an amazing team, anticipating each other’s needs and helping each other out always. I love my sister to the ends of the earth and am always amazed at how easy it is to hang out with her.
My mother’s cousin C and her daughter joined us for dinner and brought mini Bundt cakes for dessert. We had the most delightful time, dinner for 13, and it went quite smoothly.
We were all super tired and napped after dinner was over, and turned in early since we had to wake up and get on the road home by 7am in order to get our middle kid J to work by noon. The trip home went off without a hitch and we made it in a little more than 4 hours. There was an unbelievable lack of traffic delays on 95 south, we were very fortunate to have an easy trip.
I had this laundry list of things to accomplish when I got home, and pretty much didn’t do any of them. I had lunch with my lunch bunch friends, did some cleaning and unpacking, took a long nap, and worked on my blog in the late evening.
Tomorrow, January 17, is chemo #23. We will start later in the day, after 11am, so it will likely be dark when we get home. I’ve been a bit less anxious about tomorrow’s chemo than I usually am, I’ve gotten better at putting it out of my mind.