Second Phase Roller Coaster
This past week has been a roll coaster, starting with me continuing to slowly climb up to to a recent peak but then crashing down steeply. Unlike the ride, though, the descent was not exhilarating nor something to savor. As far as eating and how I'm feeling, it may take a little while to get back to the condition I was at last Wed/Thu. I went from eating Peking Duck to going back to a liquid diet. The reason for the decline is the start of the second phase of chemotherapy, which began on Tuesday (14 August).
After meeting with the doctor, I decided to continue with the standard of care treatment. This second phase will consist of three cycles of chemo, with each cycle lasting 28 days. Fortunately, there is no radiation. I'll be getting two drugs each cycle - Carboplatin and fluorouracil (5-FU). The Carboplatin is being used instead of Cisplatin, since the ringing in my right ear has not completely stopped. The dose is higher than what I had gotten before. The 5-FU is an antimetabolite drug that gets infused over 96 hours through a pump. After finishing the 5-FU, I get a neulasta shot to try to boost my blood cell counts. There is some flexibility in the program, so while I should get my last infusion in October, it could be sooner (if I stop) or later (if I delay and continue).
I wore the 5-FU pump as a fanny pack for most of the remaining 96 hours of infusion
The side effects of these drugs have already hit. Fortunately, I think the Carboplatin side effects have been quite manageable so far. My energy is down a little bit but I haven't experienced nausea, vomiting nor diarrhea (in fact, I had more of a constipation issue). However, the 5-FU side effects have been immediate and impactful. In particular, 5-FU will impact my entire GI tract, from mouth sores to my throat and stomach and beyond. The mouth sores started 2-3 days after starting the infusion. My lips and mouth are swollen, like I've been punched. The inside of my mouth and my tongue is hypersensitive. The sparkling water I was drinking for dry mouth now cause my mouth to burn, so the Sodastream will get a hiatus. Brushing my teeth nearly brings me to tears. My lips and the corner of my mouth are cracked, so they will be coated in Vaseline going forward. (I'm sparing you photos of all of this.)
Of course, the mucositis is severely impacting my desire and ability to eat. First of all, I can't open my mouth fully, so I can only eat small amounts of food. Chewing causes pain, so I'll be back to soft foods. The good news is that my swallowing is better than when I had radiation, so I can still drink milk, water and other liquids. I've tried eating some solid foods, but the pace is excruciatingly slow. The nadir of the mouth sores is supposed to be 7-14 days, so it's likely things will get worse for me before they get better. It'll be back to the Ensure Plus / Boost VHC / Benecalorie diet, it seems.
That likely diet is quite a change from the eating I enjoyed during my mom's visit. While she was here, I had great pastas, ate quality meats and satisfied a few cravings. Before going to the hospital on Tuesday, we went to Cafe Spiaggia. This is the casual restaurant associated with the award-winning (and Top Chef-winning) Spiaggia. There, I was able to eat a meatball in tomato sauce, their famous gnocchi in wild boar ragu and even sample some of their skirt steak salad. I was surprised that I was able to chew the steak and eat it without much problem. We also shared a very nice tiramisu. It was a fantastic lunch.
Encouraged by that lunch and talking with the dietician (who warned me of what was to come), I decided to try my luck at eating a pizza for dinner later that night. Pizza has four traits that make it a challenge: a) dough and crunchy crust; b) acid (tomato sauce); c) meat; and d) potential spice. I'd been craving a pizza. but it turned out that I was a little too optimistic. Stella Barra was able to do a pizza with half mushroom (with a white sauce) and half sausage (with red sauce). I was quite satisfied by finishing a few slices of the white mushroom pizza. However, I forgot (or didn't really notice it before) that the sausage was a bit spicy. Only a few bites caused my runny nose and tears, a sure sign that the mouth irritation trumped my desire. Now would be the time to challenge me to a spice eating contest. I did have to make another modification from usual eating ways, in that I ate my pizza "Andy-style", leaving the big crusts behind.
Stella Barra pizza - shaved mushroom with gruyere, truffle oil, rosemary; sausage & fennel
Even a day after the infusion, I was feeling pretty good, so Aiday, my mom and I went to Sun Wah BBQ for their Beijing Duck Feast dinner. This is a restaurant that won James Beard America's Classics in 2018 for this particular meal. I love this dish, and there was reason enough to celebrate. Again, I was pleasantly surprised by how much I was able to eat. (I had to carry my own weight, as my mom and Aiday had eaten happy hour oysters just 2 hours before.) The Peking Duck is served in three courses - skin/meat with pancakes; noodle or fried rice; and duck broth. Sun Wah's version is a little different from what I've had before. They serve the first course with a steamed bao instead of thin pancakes. Also, the duck is sliced with a higher meat to skin ratio than I'm used to. The skin did have good flavor and the duck has enough fat that I could eat the meat as well. The crunchy bits did not cause any problems. This duck dinner was probably the peak of my eating, as the side effects of the chemo started shortly afterwards.
After my mom left on Thursday, my sister and nephews came for a brief visit this past weekend, coinciding with the Air & Water Show. For dinner, we went to get pho on Saturday night. I figured this would be manageable, since it was one of the last meals I could eat during radiation. Unfortunately, even this was problematic. I could eat the noodles and broth (without sriracha, jalapeño, lime or hoisin) but not the thinly sliced meats. The decline between eating sliced duck on Wednesday night and not being able to eat on Saturday was much more rapid than I expected. We did get a pretty amusing picture, as there was not one, but two photo bombers, in addition to the reflection of the photographer.
Pho and Vietnamese dinner with Aiday, my sister and nephews
Hopefully this new phase of treatment will go smoothly. The upward trend in the recovery will certainly be paused through the late summer and early fall. I'll have to do a lot of eating to make up for it once I'm back.