I was blessed with about five feel-good days before the next chemotherapy treatment. On such days I try to get out and walk 3000 to 6000 steps since I seem to tolerate the chemotherapy better when I haven’t been too sedentary beforehand. These feel-good days are also a time where I can eat almost anything I want with no ill effects, though for some reason I have developed a sort of stomach-turning aversion to fried food since the surgery. My theory is that with no gallbladder my liver has limited ability to produce bile on demand, enough to digest a lot of fat and oil.
The day before the chemo I had lasagna for dinner, one of my favorites. I feel like Garfield, I could eat a whole pan of it before I realized I probably shouldn’t have eaten a whole pan of lasagna. Once or twice a year I make lasagna myself, a northern Italian version inspired by Marcela Hazan’s lasagna with meat sauce. I like to make fresh spinach noodles, and roll them out in my hand-cranked pasta maker. It adds about an hour to the preparation time and makes a bit of a mess, but the quality of the end product is incredible. Those noodles get layered with a Bolognese meat sauce, salsa balsamella (like bechamel sauce) instead of ricotta, loads of mozarella cheese, and baked to perfection. This, unfortunately, was not one of those times where I had the energy to make lasagna from scratch. But eating just about any other lasagna is not settling for second-best. I think all lasagna are like flowers, every species is beautiful and always a treat to behold. I don’t judge, I just enjoy. Though I don’t eat flowers — I only appreciate them visually — and I don’t usually regard lasagna as a thing of stellar beauty, my stomach does most of that assessment. So OK, it’s a bad simile, but you get the idea I think.
Barbeque ribs with cole slaw. Tacos al pastor. Clam chowder. Key lime pie. 3-cheese mac and cheese that I made with cheddar, gouda, and mozzarella (just what I had on hand). These were all my indulgent little treats before the start of this next round. And luckily I was able to gain back the 5 pounds I lost in the previous week, when I was trying not to eat so as not to poop. Probably not a good strategy, but you survive these things however you can.
Also in the last week, my wife and two of my kids came down with some kind of terrible respiratory cold that probably wasn’t coronavirus, as we tested them all for COVID every 2 days. The youngest was several days ahead of the others. All were confined to their rooms and wore masks in the rest of the house to afford me some protection. I had to sleep in the recliner for several nights in a row, and it occurred to me that our new sofa would be more comfortable and it was, except for the cats fighting violently over who would lay claim to the Throne of Human for the evening. Also my children talk to each other and with friends until about 4am at top volume, which is a lot easier to sleep through when you can close a bedroom door. Then at 4am every morning my wife wakes up and does a morning ritual that involves grinding coffee, whistling a tea kettle, and unloading or loading the dishwasher. One day was so full of coughing I could almost see virus droplets hanging in the air like smog, and I was so exhausted from 1.5 hours of sleep in the living room, that I got a hotel room so I could get a full night of sleep. It was like the best vacation ever — quiet, dark, luxurious rest. I slept for 8 hours, had breakfast, and slept for two more.
The lobby had a nice new Brunswick 8-foot pool table, so after loading up my car and before check-out time, I whipped out my two-piece custom-made pool cue and tried some shooting. After a pretty short while it hurt my core muscles, due to leaning over a table so much. I hadn’t realized quite how much leaning over pool actually involves. A nice Israeli man with a very thick accent wanted to play and take some shots, and asked a lot of questions about how to stand. He had played a bit as a child. After a while his teenage son showed up and also wanted to try it out. The father was a very quick learner and had a lot of body discipline, I showed him how to use bottom English to do stop shots and even draw shots, but draw shots were a bit tricky for him, he kept lifting the back of the stick and launching the cue ball over the object ball and over the table. I’ve so been there with the same shot so I’m a patient teacher. One time in a match I got excited, tried to do a stop shot, and launched the cue ball over the 8 ball, scratching straight into the hole and losing the game. The guy got pretty good at stop shots and another couple tricky shots I showed him. His teenage son was a different story though, he was in town for a tennis tournament and by golly, he played pool just like you play tennis. Duck and cover! It was kind of funny, he looked a lot like a Space Invader with his weird wide stance and his waving the cue around like a sword.
Wait, this is a post about chemotherapy, not about my food indulgences, pool, and struggles to get a night of sleep!
So Chemotherapy #18 day began with me sleeping in until about 10am. It was my first night back in my own bed with my hopefully-recovered wife. I slept very well and felt rested when we headed out for the 11:45am lab appointment.
At the lab appointment the port nurse remembered me from months ago and though you can never be happy to have someone back at chemotherapy, she was chatty and encouraging as she accessed the port, drew a few vials of blood for my CEA, CBC, CMP, and LDH levels.
At the oncology appointment afterward, we discussed the troubles with the previous round and they gave me a regimen for using more immodium since it seems I was being a bit too conservative with it. I admit I was avoiding it because it comes in these little blister packs that are made out of dwarf star alloy, and with the peripheral neuropathy in my fingers, I can only get the drug out by smashing it to smithereens with a hammer and licking up the leftover powder on the table. My wife knows some kind of black magic that involves scissors, that extracts the pills whole, so I will try and go with her smarter plan that I have to admit is a little more refined than my Hulk smash method. I also got a prescription for these weird waxy hydrocortisone bullets — okay this is an overshare — but apparently these can help but they aren’t taken like… traditional medicines. <shudder>
I got my lab results and I am losing red blood cells and platelets, we’re below the minimum desired values there. My liver numbers are back in a good range, which was good news, the 2 weeks of saline in the HAI pump were a good rest and my liver seems determined to recover. My CEA (carcinoembryonic antigen) levels have gone down from 70.6 to 19.2, which the oncologists seemed excited about. It shows the cancer growth was significantly halted by the surgery and last round of chemo.
Next I showed them a complication that has arrived in the past few days, where a big chunk of dermabond in the 3-inch HAI pump incision had come off and left a deep hole that was weeping. My surgeon and his team (seriously, 4 people showed up), rushed over to check it out, and since I’m allergic to more Dermabond, they cleaned and sutured it, and covered it with steri-strips. We need to watch it carefully because infections around the HAI pump are no bueno. The surgeon also didn’t want the incision to un-zip from this spot, which sounded super bad. I was totally impressed that the surgeon did the sutures completely painlessly, where I was mentally prepared for suffering, since I’ve never had stitches or sutures while conscious. It was neat and professional.
Though it did spring a leak when I went up to the infusion lab. The nurse taking my blood pressure noticed I had blood all over my shirt, and she checked it out and covered it with gauze. The eliquis blood thinner I’m on for my pulmonary embolism doesn’t take kindly to any kind of clotting action. I have had to shave with an electric razor because if I cut myself shaving it will bleed for half a day.
Then we had a significant wait for an infusion room, so we went out on the balcony in the sun. We weren’t actually in the sun because there was also a crowd on the balcony and the four tables in the sun were all occupied. We sat on a bench in the shade and the temperature was just perfect. Jen got me an avocado grilled cheese sandwich from the cafe on the first floor and I wolfed half of it down before I realized it was really spicy. They had given me the avocado and spicy pimento with bacon sandwich instead, which was nice but the spice made the whole thing go right through me. I love love love spicy food but not since the FOLFIRI chemo, which has made it downright painful, and my GI tract goes into full rebellion when it gets any.
While we were enjoying the fresh air out on the balcony, two women came out and one posed for a photo by the edge of the balcony, and I realized due to the presence of a cowbell that this was the bell-ringing ceremony for a woman ending her chemotherapy regimen. She rang the bell while the nurse filmed it on the phone. And when the ringing stopped, the crowd all erupted into applause. It was special to be in that moment, it brings tears to your eyes to see a significant battle won.
I’ve always chafed a bit when I hear certain phrases like “cancer battle” and I think I avoided using them for a long time. I think I prefer to say “cancer journey,” mostly because I’m not the only one on this path. Besides, cancer isn’t much of a battle, it is more of a full-scale alien invasion and calling it a battle makes it feel like you have some active role in defeating it. No, mounting an opposition to cancer is more of a dark, passive endurance like surviving a siege without starving to death, and hopefully one day emerging into the sunlight… victorious?
Our friend Aggie sent me a nice note with a muggle bingo card, containing terms which are the inadvertently irritating things people say like “think positive,” “this is God’s plan,” “you’re so brave,” “eat lemons,” “drink celery juice,” and “you don’t look sick.” It is funny and gave me a laugh, but after some consideration my opinion is that anything people try to communicate as they contemplate what you are going through, is endearing and uplifting to me, and it touches me that people can overcome the awkwardness of the situation to offer any kind of encouragement at all, which is a kind of miracle in itself.
I will say something about God’s plan though. God’s plan is never for anyone to ever suffer, not for His glory or anyone else’s. Suffering happens as a result of our collective free will, and I find the love and presence of God in all of those windows that open when suffering happens. People reaching out with a good word, sending cards and gifts, hugs and love, prayers, follow-ups… that is the plan. An explosive round of applause for the woman finishing her chemotherapy, surrounded by the joy of complete strangers. These are special moments of God, whether you believe in a deity or not: our truly human capacity for love and compassion are inspiring and transcendental, they leave a permanent mark on the breadth of the universe, as do we all. Live a story of love and compassion. Nothing else really matters.
What also matters a little, is getting an infusion room before fatigue takes you down. After a long wait our pager went off and we were led to a hospital bed in a private infusion room. Being eligible for a bed is very nice for me, but the other infusion rooms have two recliners and it’s more comfortable for my wife to be able to relax also. The rooms with beds are too cramped for a bed and a recliner, so I see her disappointment at spending a few hours sitting on an uncomfortable bench. She quietly sacrifices so much in life to give me comfort and advice through this journey, and to make sure I take the right medicines at the right time.
This round of chemotherapy is a double-whammy like I’ve never endured before: (1) my hepatic artery infusion pump will be filled with the full dose of floxuridine plus 25mg dexamethasone, to be infused over 2 weeks; and (2) I will receive the dose of FOLFIRI: irinotecan and 5-fluouraracil.
The infusion nurse was fun to talk to and full of more great information. She gave me 3 x 4mg dexamethasone pills and 2 x 4mg zofran pills, and we waited for a half hour for those to take effect. She then asked if I wanted to have a dose of atropine before the irinotecan infusion, and I did because it helps with the GI spasms and crampy pain I get during the infusion and a little while afterwards. I learned that atropine dilates your pupils, which might be partly responsible for the angelic chemotherapy pictures my wife posts of me on Facebook. Also it’s probably responsible for what I call the “giraffe walk” after I get infused. When I get on my feet my gait feels clumsy, like I am top-heavy and might topple over.
I tolerated the irinotecan infusion as I normally do… there are little spasms in my GI tract and then “i run to the can” after about 45 minutes. It sure starts working fast on my GI tract! After 90 minutes of infusion they hooked up my 5-fluororacil to infuse over 46 hours at home, and we went home at about 7:30pm in the dark. about 8 hours this time!!
I feel nausea and an unsettled stomach pretty soon after infusion, and for dinner I had leftover fettucine alfredo and mac and cheese, those really settled my stomach nicely. Things that aren’t too acidic tend to work pretty well.
Sleeping that night was rough, I was exhausted but the steroids kept me awake until 3am despite taking 5mg of melatonin, which usually is able to overcome the steroids after a while.
I was resting in my recliner around 2am when our cat Tiga tried to leap from a nearby chair onto my stomach. It’s been a while since he’s attempted that, and he didn’t really even have a clear path to my stomach unless he could curve in the air like those bullet trick shots and… spoiler alert, he couldn’t. He caught the edge of my computer keyboard on a table beside my recliner, and knocked the keyboard and the entire table over, along with my phone, flashlight, USB hub, headphones, pens, and a Perrier bottle. It made quite a racket that brought half the family running.
Eventually I got sleepy and went up to bed. When I’m on the steroids I try not to be in my bed tossing and turning, trying to fall asleep while my wife is trying to get enough sleep to be rested for work the next day.
The next morning, I woke up to a note from my youngest son: the cats knocked over this thing on the piano which in turn knocked your medicine box into the litter box and it scattered some medicine around. I picked up what I could find and put it in the metal cup.
Good luck taking your medicine this morning!!! Yum!!