On November 30, 2021 at 8:30am, I arrived at the cancer center and went straight to the lab. I was taken to a nurse who accessed my new port for the second time. The first time it was accessed it was done to test the port at the time it was installed but the procedure was brief and my skin was numbed from the lidocaine shots used in the procedure. I was a bit anxious about whether it would hurt to put a big 20 gauge Huber needle into the port. The nurse had me take a deep breath and inserted the needle, which was momentarily a little painful but easily tolerable, certainly less than an IV insertion and probably less than a blood draw: even though those tiny butterfly needles are like an insect bite, the phlebotomist does sometimes have to fish around to get into the vein. In the end I found the port access procedure to be very easy and tolerable even without the prescription lidocaine cream that some people apply about an hour before their port is accessed.
After the needle is inserted, the nurse flushed the port by pushing about 8ml of saline. Partway through this procedure she checked for positive blood return by drawing back some blood into the saline to confirm that the port was clear, which looks wicked cool because a puff of red erupted into the clear saline in the syringe, before it was all pushed through the port to flush it. Next the nurse used a different, larger syringe to draw a good amount of blood, which she then injected into a handful of vials. The lab ran a serious number of tests — a complete blood count, a comprehensive metabolic panel, iron levels, cholesterol (I didn’t fast or realize that would be checked), vitamin B12 level, CEA (carcinoembryonic antigen), and a half dozen other tests.
The nurse carefully covered the port and needle assembly with a palm-sized Tagaderm patch and several pre-cut tape strips that fix the line in place so it can resist some amount of accidental pulling or stress, and released me to go to the oncologist’s clinic on the 3rd floor. After a short wait I was brought into the clinic and had my vitals taken. With clothes and shoes on I was 203 lbs, so compared to my home scale weight of 194, I guess my whole kit weighs 9 pounds!
We were brought into a comfortable clinic room with a cool recliner-exam table and met with the Oncology PA, who did an examination and asked questions, explained again what was about to happen, the drugs involved, and what to do when side effects occurred.
I had the option of volunteering for a study. I’ve read online that simply being in a study statistically improves your survival odds dramatically, so I accepted the offer and spent a while being briefed on the study. I had some associated vitals captured again, and we were soon released to go up to the 4th floor infusion clinic.
The waiting room for the infusion clinic was beautiful, with a panoramic view to the North of the cancer center and the Clinic area, parking garage, and the rosemary-filled garden at the center of the plaza. It was a beautiful sunny day, so we took some seats by the window and snapped a couple photos to memorialize the first chemotherapy infusion day.
Soon we were brought into the infusion clinic, room 52, which seems like one of a quite large number of rooms. It was an impressive windowed private room with a view, with a gorgeous south-facing view of the campus. The room had a comfortable-looking green chair for Jen to sit in, and a sweet recliner for me.
I was offered snacks, most of which were heavy on carbs and sugar, and given ice water and an indulgent hot cocoa to sip on. I brought some nice smoked gouda cheese I cut into cubes and put into a plastic container for a healthier snack, so I had a few of those. I was given 8mg of Dexamethasone and 8mg of Zofran and allowed 30 minutes for those to start taking effect before any infusions started. They started me on an IV dextrose solution for extra hydration, then after the waiting period they started the oxaliplatin infusion. It seemed to be going super fast, like 4 drops a second. I focused on drinking all the ice water and getting another cup of water, to stay hydrated. For about 45 minutes I didn’t feel much of anything but after a while I developed a slight numbness at the tip of my tongue, and an odd slightly-numb, slightly puffy feeling developed in my nose and cheeks over the next hour. Near the end I started to feel a little unsettled in my stomach but no nausea.
Soon the infusion was done and another nurse came in to describe how the next infusion of the 5-fluorouracil would work over the next 46 hours. They hooked up a little clear chemo hand-grenade sort of contraption with a 5ml per hour limiter attached in the line, and spent about twenty minutes educating us about what to do in case of spills or leaks (the stuff is cytotoxic so they gave us a whole hazard cleanup suit and materials).
We got scheduled for a home health care nurse to come on Thursday at 12:30pm to remove the chemo grenade and de-access the port, and we were released.
We left the clinic after stopping in the lobby to bundle me up, as they warned me not to let cold air touch my bare skin, and it was in the 40s outside, pretty chilly. I put on a hat, scarf, and gloves and we ventured outside. Almost immediately my cheeks and face felt very uncomfortably cold, so I kept my cloth face mask on because it helped keep my face warm. We made it easily to the car, I had no problems walking or with balance. A successful first infusion and start to the second!
Side effect: Nausea. I felt pretty well after the first infusion except my stomach felt unsettled for most of the rest of the day. About 11 hours from my first dose of Zofran I started feeling increasingly nauseous, and I ended up taking the next pill about 15 minutes early. The next time I felt nausea was about 14 hours later, so I took another Zofran. After that it was about 20 hours, and I took the third Zofran. I didn’t need it again after that, no more nausea! I felt fine until I ate something, then my stomach would feel queasy for an hour or so, then return to normal. My working theory is that the oxaliplatin caused the nausea but that I tolerated the 5-fluorouracil better, and as I expelled the oxaliplatin my stomach felt much better.
Side effect: Cold dysesthesia. I was fixing myself some dinner that night and took some ginger out of the fridge. I peeled it using a spoon then held it down on the cutting board to slice it. After about 15 seconds of slicing, I thought I had cut myself, let go of the ginger, and looked at my finger expecting to see blood, but there was none. I went back to slicing and the same thing happened 10 seconds later. I tried just holding the ginger in my hand and realized, this is a very intense needle-like sensation that happens when my skin touches very cold things. I noticed while being outside in the cold that breathing through my mouth makes my throat very scratchy, so I wear a face mask and breathe through my nose and it is comfortable to do so. Amazing that wearing a face mask makes my breathing easier! On day 2 I abandoned any kind of cold water, it was too painful to have in my mouth, let alone to swallow. I switched over to hot tea but I don’t have much caffeine anymore and after a half dozen cups of tea I had a lot of trouble sleeping that night. On day 3 I discovered lukewarm water but it was hard to get the motivation to drink at least 64 ounces of warm water every day, so I started adding half a fresh-squeezed lemon to each 16 ounce glass. It didn’t add much sugar to my diet and since I didn’t yet show signs of the mouth sores that many people on chemotherapy report, it is working well for me and is as refreshing as a lukewarm glass of water can be.
Thankfully, on day 6 I could have cool (not icy) water without trouble, and by that evening I could even have a spoonful of ice cream without suffering any discomfort. More than one spoon of ice cream cooled my mouth too much and I had an irritating scratchy feeling in my throat, so I keep my pleasures and indulgences small and just appreciate them more. Right now I’m really into Perry’s Parkerhouse Amaretto ice cream with maraschino cherries. One delightful spoonful at a time. By day 8 I think the cold sensitivity was pretty much entirely gone. I still haven’t jumped right back into putting ice in my drinks.
Side effect: first bite syndrome. When I first take a bite of food, especially sugary or sour foods, the salivary glands activate and release saliva, and occasionally I get an intense nervy feeling near my ear(s). On day 2 I found out this can be quite uncomfortable when I first took a bite of food and the feeling took over for 20 seconds – way, way longer and more intense than usual. This lasted until day 4.
Side effect: liver pain? On day 10 around lunchtime I felt a low-level, tolerable pain like my lowest right rib was irritated. It was worse when I used my abdominal muscles to stand up, or if I was standing for a long time in the kitchen, or walking around the neighborhood. It waned by that same evening, and was followed by epic diarrhea.
Complication: diarrhea. Just when I thought I was out of the woods, on day 10 I started having frequent, watery diarrhea. I tried desperately to drink a 50/50 mixture of pedialyte and water, 64 ounces of it on day 10, and 96 ounces of it on day 11. Unfortunately on day 11, I passed out on the bathroom floor and had an ambulance ride to the hospital. The diarrhea lasted until day 13. It took several IV bags of fluids for me to snap back and be stable on my feet again. I needed a couple days of bowel rest and IV fluids to overcome it.
Side effect: fatigue. Before the chemotherapy infusion started I was given dexamethasone, and on day 2 and day 3 I also took a dose of this at home. I felt surprisingly normal on those 3 days while the 5-fluorouracil was infusing, and I was even a bit overconfident in retrospect and hopeful that this chemotherapy thing was going to be cake. Maybe it was the ‘roid rage talking but when I stopped the dexamethasone on day 4, about 3pm I got really fatigued. This is when my body realized it’s been poisoned and freaks out. I worked through the tiredness until 5pm, ate some dinner, then went right to bed. I slept 12 hours like the dead and woke up. On the morning of Day 5, I felt reasonably energetic and even did some drywall repair in the kitchen where the hooks that hold my pans on the wall pulled out. I skim coated the wall to repaint it, then I realized all my chest and abdominal muscles were sore and tired. I laid down in bed to rest a bit and ended up sleeping 3 more hours. I woke up, went out to the workshop, and cut a 2-inch wide red oak recycled board to match the width of the wall beside my stove, planed it down to the thickness I wanted, and after measuring with the stud finder, I drilled holes in the wood where the studs in the wall would go. I sanded and stained the wood. Then feeling super tired, I went back to bed and took a two hour nap. Then I woke up and sanded the kitchen wall, and painted it. Looking great! I made dinner and went to bed early. In that 24 hour period I slept 17 hours! Day 6 was better, I woke feeling more refreshed and was able to put another coat of paint on the wall, go for a walk of 3000 steps, and then, batteries depleted, took a nap. I made buffalo wings for everyone for dinner, which took a lot of energy and standing. I even made myself a special non-spicy buffalo sauce that was amazing, I took time to write the recipe down. I had 4 non-spicy wings before my stomach cried for mercy… pushing the envelope of greasy food, but I was able to digest it with no problems. I balanced it out with a pound of fresh spinach prepared as Indian <em>saag paneer</em> with onion, spinach, paneer (cheese, like kind of a block of solid cottage cheese from India), ginger, coriander, cumin, and garam masala. Yummy!
Some concluding thoughts on my first chemotherapy round
All in all, even though some of the more dramatic features of round 1 really sucked, I feel fortunate that I was spared from some of the intense or horrible side effects I’ve seen and heard about. I’d like to say I’m looking forward to round 2 but really I’m more looking forward to getting it done with. I am grateful for the doctors, nurses, researchers, and medical professionals who made this kind of treatment possible, and also grateful for the prayers and good thoughts my family and friends have been sending. I feel very loved and appreciated in this world and I love you all.