I am now able to play little tricks on my brain, like making it forget that I have chemotherapy tomorrow so that I don’t feel psychosomatically sick to my stomach when I think about it. For this round, a bit of blissful ignorance helped me because I woke up Tuesday morning feeling pretty darned good. I knew that on this day, my appointments started at 11:45am so it would be late and dark when I got out.
I had a nice hot shower to start the day, attended some morning meetings by video conference, then we got in the car and headed to the cancer center. We got there exactly at 11:45am, and I checked in at the lab then got my port accessed by my favorite port nurse again. I am eternally grateful for the port, and it makes me happy that it saves me from so many painful IV sticks and blood draws. The nurse drew blood for a CBC (complete blood count), a CMP (comprehensive metabolic panel), and a LDH (lactate dehydrogenase).
When the results came back, my platelets were down again to 98 [E9] (should be 150-450), Red Blood Cell count at 4.09 [E12] (should be 4.37-5.74), AST 49 (should be 15-41), ALT 74 (should be 17-63), and my LDH was 170 (well in range 100-200). The AST and ALT show a bit of stress on my liver from the double-whammy chemo, but my hepatic artery infusion pump gets filled with saline this time so my liver will have a bit of a break. The LDH (lactate dehydrogenase) is not elevated at this time, my understanding is that this is a by-product of cancer cells being primitive and using fermentation to get energy out of the sugar they consume. In short, there seems to be a correlation between high LDH levels and early mortality, so the LDH gets tested every so often, and we really like the LDH to be in the good range.
So, at 12:45 we met with the oncologist and discussed the last cycle’s side effects. I complained mostly about mouth sores, some poopy discomfort, and nausea. I managed to gain a couple of pounds and am now at 204! We decided the lab numbers were good enough to go ahead with the chemotherapy infusions, so I went up to the infusion clinic next, checked in at 1:15pm, and my wife went down to the Panera bread shop and got me a lunch of tomato soup, which was the only thing that appealed to me on the menu at that time. We had a pretty long wait until about 3pm for an infusion room to open up, and finally my pager went off and I got to relax in a hospital bed. I got 12mg of dexamethasone steroids and a couple of Zofran, and about half an hour later got some atropine to make the irinotecan infusion go easier.
This time, the irinotecan didn’t cause as much tummy-roiling or little spasms in my belly, and I didn’t have to run to the toilet halfway through because I cleverly took a prophylactic imodium in the morning. When the irinotecan was finished, nurse O talked another nurse through her first HAIP (hepatic artery infusion pump) access via the needle. It’s always a little harder when someone inexperienced accesses the HAIP because they have to move the needle around to get properly into the pump reservoir, which involves a bit of pressure and wiggling in my skin. But after a minute or so the nurse being trained was able to get the needle in place, and my floxuridine chemo solution started flowing up into the syringe. The amount extracted was measured and compared to the amount put in, and a flow rate was calculated. This rate has to be carefully observed, as if it is too high, my liver could get too much floxuridine and experience some liver toxicity. Next the HAIP was partially filled with saline to flush it, then filled with a large enough amount of saline to last the next few weeks.
Next I was hooked up to the home IV pump, the 5-fluororacil was connected to my port, and we were sent home. It was after 6pm and quite dark outside.
Around 9pm I took 5mg of melatonin to help me sleep, as the dexamethasone keeps me awake even though I am exhausted from the chemo infusion day. I ended up staring at the ceiling until after 3 a.m., listening to ocean waves on my phone with headphones, and clearing my thoughts. Nothing really helped but finally I fell asleep.
Usually I wake up around 5am with a wave of nausea, but this time I didn’t stir until about 8am, when my wife sends me texts to remind me it’s time to take my medicines. I had no nausea at all — not even an upset stomach. Just in case, I had some Carr’s table water crackers with cheese, as having a little something on my stomach generally helps with nausea. I was still quite tired, but took a shower and drove the 25 minutes into work feeling pretty good.
I had an appointment with my endocrinologist, Dr. B. He downloaded my Freestyle Libre file and was very pleased with the results, that I have had 88% time in my desired blood glucose range, even with the steroids messing up my blood sugars for several days. He was very encouraging and loved my 6.0 HgbA1C, showing pretty good sugar control.
Next I rushed to lunch with my lunch bunch friends, H., M., and S., at our favorite Turkish restaurant, and had lentil soup and lahmacun (ground meat on a cracker-thin pizza-like bread). All sat quite well on my stomach, with no indigestion at all. I began to worry that I’d been given a placebo instead of chemo. Except for the caustic poops and loose stools that were well-controlled by imodium, I might have suspected they lowered the irinotecan dose or something.
I was feeling so overconfident in the chemo side effects, though, that Wednesday I purposefully didn’t take my 4mg dexamethasone.
The next day I regretted that decision. I had some nausea at waking, not as bad as usual, but still there as a reminder not to mess with the regimen! I didn’t feel like I needed Zofran to deal with it, so although I brought it along I didn’t ever use it. I went into work, had lunch in the cafe downstairs, and made it back to my house in time for chemo takedown with nurse J., a home health care nurse. He is a cancer survivor and I truly enjoy talking to him, his attitude is inspirational and comforting, and he truly cares about his chemo patients. Nurse J. flushed my port line with saline, then filled it with heparin to prevent clots from clogging it, then took off the sticky dressings and removed the huber needle in one swift go.
It is always wonderful to be free of the 5FU chemotherapy pump and the port access. I worked from home in the afternoon, then took a shower. I felt good enough that I drove to pool league and played an 8-ball match against another 4 and very narrowly lost though I played really well. Then I played a 9-ball match against a 5 and though I pulled way ahead for the first 18 balls, he caught up and beat me by a few balls. I was still proud of how I played, particularly since I was fatigued from chemo week.
Since I also didn’t take my dexamethasone on Thursday I woke up with a little nausea on Friday also, but it was tolerable and went away after I had some bread and butter. Friday night my pool team played in the 9-ball World Qualifiers, a.k.a. the City Tournament, where the best pool teams from the bars in our region compete for a spot to play in Las Vegas. We played really well, though whoever was putting songs on the jukebox was about a hair’s breadth from jumping off a bridge, there was a never-ending lineup of the most angsty, goth, and depressing songs you could imagine. We ended up losing but since it’s a double-elimination tournament we got to play at 10 a.m. Saturday in the next round.
We also lost that round, but only by 2 balls. I had another performance where I sunk the first half of my balls quickly and was way ahead, but my opponent kept the pressure on and worked her way back to beating me. Sigh. We were tied at the beginning of the fifth and final match, which was a sudden death match owing to the time, and all balls counted double. It was a very exciting match with our best player D. and their best player, and the other guy eked out a win in the end.
Losing was nice though, because I didn’t have to go to the next round at 2:30pm, and it freed me up to go with my wife to my coworker J’s house for Lunar New Year. She and her husband made several chinese dishes and taught us how to form the dumplings, which they pan-fried. We started with delicious tea, served in an intricate set of cups where you fill a tall cup, then flip it into a shorter wider one before drinking it from the other cup. Then we shared a meal of dumplings and several other wonderful dishes, one with a kind of shredded pressed tofu, one with wood-ear mushrooms, and another with a sheet-like mushroom protein with celery and cashews, then for the next course we had a chilled pumpkin soup made with a pumpkin they grew in their garden. All very very delicious, and though I worried about it being bad chemo week and my digestion, every dish was comforting and felt super healthy. I am super grateful that my coworker invited us over and shared their traditions and we swapped many great stories that night. What a wonderful time!
That evening, I fell asleep in my recliner and slept like 6 hours before waking up and going to bed. I was exhausted after a very long day.
Sunday, the lunar new year of the rabbit, I woke up and did the dishes in the sink. I spent the day running errands and asian market shopping, then having lunch with my friend J. at a Korean BiBimBap restaurant.
Then came the Good Week! I was feeling pretty well, though over the weekend I developed some mouth sores (an irinotecan side effect I often get after a handful of days), and the worst one was under my upper lip rubbing against my teeth. Any kind of acidic food would really set it off. I rinsed with baking soda and salt water, and it provided some relief and I think healed things faster.
On Monday we had a lunar new year celebration in the research building’s cafe at work with dancers, drummers, bao buns, spring rolls, and lo mein. It was a nice lunch break full of culture!
Tuesday, on my wife’s day off we went out for empanadas for lunch, then for dinner we went to our favorite local Indian restaurant and I ordered lamb korma, which is not very spicy (I made it several weeks ago and the recipe I used didn’t call for a lot of chili pepper), but it came out pretty darned spicy and I could only get down a quarter cup or so. It was delicious!!!! But after about 40 minutes I suffered some fairly debilitating indigestion and had to lay sideways in bed for a while before I felt better. I had some ice cream thinking the cream would coat things with a comforting layer of diluting dairy, and it seemed to work really well. Not sure if it comforted me or my intestines, but it was a success and I didn’t feel too badly anymore. Until the next day at poopy time, but that’s another story!
I went to pool league again on Thursday night, feeling much better this week, and played a very good level 4 player, so we both had to win 3 games to win the match. I easily won the first and second game for a 2-0 lead, lost the third game for a 2-1 score, then won the fourth game ending with a 3-1 score (which in APA scores our team 2 points). I played really well and had one miracle shot some team members called Wizard. I figured there was a one in a thousand chance that shot would work, and it did!
Friday I went into the office for work, and returned in time to have several of my wife’s friends over for Cards Against Humanity games. It was a fun time especially since because of COVID it’s been actual years since anyone but family has been inside my house I think.
Saturday morning, my crown tooth came out when I was chewing my morning probiotic gummy. I had to have days of soft food until Monday at 3:30pm when my dentist could see me and cement it back in. Luckily it wasn’t painful or cold sensitive, just a little tender around the gums.
I wanted something soft and eggy for breakfast so I made crepes filled with raspberry or guava jelly. This recipe has been an O family tradition for a couple generations, and we always called them jelly pancakes as kids. My oldest son came down and demolished several crepes. My middle child had one, and my youngest wasn’t that into them, and only had half of one. It was more carbs than I ordinarily eat, but all the breakfasty proteins I could think of would be hard to chew with my crown missing.
And on Monday the crown was reinstalled after some x-rays, all was well, no underlying decay or reason for concern, just that the old cement had had enough. I had to wait a couple hours before eating…
So that night I made pork butt Pad Thai. I attempted to make it on Saturday night too using a different recipe but I lacked bean sprouts and salted pickled radish, to make the dish more authentic. Also on Saturday I mis-measured the dried shrimp which made the dish too salty and a little manky because that dried shrimp is powerful stuff. So on Monday I went to a different asian market and found all the ingredients I needed, and used my leftover half pound of fresh rice noodles to make an absolutely wonderful dish. This time I also followed a recipe I got from my sister’s Thai cooking course, and made the Pad Thai sauce from scratch with tamarind, palm sugar, and fish sauce. Some folks add ketchup too but… bleagh!! Top off with roasted peanuts crushed in the mortar and pestle, a slice of lime, some fresh bean sprouts on the side, and I had maybe a 90% restaurant quality dinner! Yum!!! Though my blood sugar freaked on the rice noodles.
I was really good on Monday about not thinking about the next day’s chemotherapy #24, because doing so would give me an upset stomach, just nerves I guess. All in all though, this cycle of chemotherapy was the easiest I think I’ve ever had. I had more than a week — more like 10 days — of feeling good, only a bit fatigued. It seemed frankly miraculous, and I got to wondering if I’m building up an immunity to chemotherapy. I should hope not, as that would probably mean it isn’t working, and I do want to believe that it is working. So, fingers crossed, we go forward into the next cycle!