Happy New Year
Hope everyone has had a happy and festive holiday season and a Happy New Year! Wishing everyone a healthy, happy and prosperous 2019.
There’s been a lot happening since the last update, and I apologize for the delay. The only reason for the delay is relatively busy-ness, and not getting around to finishing the post (it actually started more than a week ago). I’ll start with some health updates and then mention some of the food & activities.
Health Update
My health is progressing well. My energy is getting back closer to normal, and my taste is starting to improve as well (more on that later). On 19 December, I went back to Northwestern Medicine to get my port removed. This was the last remnant of the treatment, so I’m glad it came out. Thus, 2018 encompassed the entirety of the diagnosis and treatment. The procedure itself was relatively straightforward, as the removal is a simpler process than the placement. In fact, they only needed to use local anesthesia, so I talked with the PA throughout the procedure and was able to go home immediately afterwards. The only negative issue that my skin continues to be very sensitive to the dressings they used to cover up the sutures and skin glue. It turns out that in addition to Tegaderm, I’m also allergic to SorbaView, which is what I got this time (apparently Opsite, the dressing that doesn’t bother me, is hard to get outside the oncology department). As a result, my skin was bloody and irritated in the outline of the bandage. At least the incision scar looks good. They went in right on top of the old one, so I only have one scar.
There are two long-term, post-radiation issues I will need to manage. Fortunately, according to the doctor and therapist I’ve seen, both are fairly moderate and won’t have much functional impact. Both conditions started a few months after radiation. Hopefully some of this will resolve with time as the radiation inflammation gets reduced.
The first issue is lymphedema, which I mentioned in the last post. As you may recall, the damage to my lymphatic system means that fluid doesn’t drain properly, resulting in some neck swelling. Since mid-December, I went to a certified lymphedema therapist (CLT), who performed manual lymphatic drainage (MLD) massage and showed me techniques for home care. This is a gentle type of massage that has helped me with improving flow and reducing the swelling. If you didn’t know me or hadn’t seen me in a while, the lymphedema swelling would not be too noticeable.
The second issue is trismus, or reduced jaw flexibility. My speech language pathologist had mentioned this as something to watch out for, and I first noticed this as I had trouble opening wide enough to eat a cream-filled donut (from Dinkel’s). The cancer rehab physiatrist at Shirley Ryan Ability Lab gave me some exercises to make sure I maintain good functional movement and proper posture (don’t want to lean forward too much). I’m fortunate in that my rehab seems much more straightforward vs. other patients. Each time I go back to the hospital, it’s a reminder of how fortunate I am to be in a better physical state than others who have to suffer more or are in a different stage of treatment.
(For those keeping track, my medical care team is over 30 people, including two internists, two ENT doctors, two ENT PAs, two audiologists, a radiation oncologist, his nurse, a team of 6+ radiation nurses and technicians, a medical oncologist, his PA, a team of 6+ oncology nurses who administered the chemo as well as drew labs, a nutritionist, an ophthalmologist, a speech language pathologist, a physiatrist, a CLT, a dentist, an acupuncturist, and others.)
Besides those two issues, things are continuing to make progress. While I still suffer from dry mouth, it’s gotten better. For example, I am now able to sleep through the night without waking up to moisten my mouth or needing to go to the bathroom from having drank too much water at dinner. While I still keep water bedside, I haven’t needed as much recently. I am also more comfortable attending shows and events without feeling a need to have water available at all times. I still need to drink a lot of water, though, when eating certain foods like bread and pastries. Drinking so much water is what will keep my weight down a little bit, as it reduces my food consumption. At least I’m able to easily maintain my weight with some minor fluctuations.
Another significantly positive sign of progress is that it seems like my tolerance to chili spice is starting to improve. I can now at least tolerate “mild” levels of heat, at least for an initial bite or two. The cumulative effect, however, of eating too much spice (even mild) gets to me. It’s still not as bad as heating something hot/fiery, but I can’t eat too much at one time. Similarly, I can enjoy the first sip or two of wine, but not too much more, especially for the higher alcohol wines. It’s like I have a thin protective barrier in my mouth. It can insulate me for a little bit, but once it’s breached, my ability to handle spice and alcohol (and higher temperature food and drink) diminishes. Also, I’ve been off cocktails and other higher proof drinks for a while, and that may take even longer to come back. In the meantime, the alcoholic drink of choice has been sour beer, particularly those from The Rare Barrel in Berkeley (mentioned in a previous post).
Activity & Food
It was a fairly busy December after returning from California, including my birthday, a visit to Ann Arbor for a nephew’s graduation, and family visitors to Chicago.
My oldest nephew Thomas had a Winter Commencement at the University of Michigan, so the family got together to celebrate him. The ceremony was held at the Crisler Center, the school’s basketball arena. So while it was smaller than the Spring Commencement, it was still pretty sizable, with only the PhD candidates getting their names called individually. Fortunately, we were able to spot Thomas in the crowd, so we got some see him as he went onstage to shake hands with the university Provost.
The celebratory meals in Ann Arbor were pretty decent, though not outstanding, I have to admit. The good news is that the double dinners are back, as I managed to do that both nights in town. We (Aiday, Seng, Gisela and I) drove out from Chicago to Ann Arbor on Saturday. After meeting my friend Tim at Zingerman’s Next Door for a snack and drinks, we went to the first dinner with a large group. The meal was tasty, but since we shared a number of items and my appetite was strong, I had some room left.
Since that Saturday was also my birthday, I figured to go out for a second dinner. There is a restaurant in Ann Arbor called the Chop House that provides a very good discount for eating there on your actual birthday. Essentially, one person eats free, e.g. 50% off for a party of 2, 33% off for a party of 3, etc. So, Aiday, Paxton (another nephew), and I went to take advantage of this promotion. My steak au poivre was excellent, as was Paxton’s beef wellington. The 27 layer au gratin potatoes was a bit too much for a second dinner, so most of that went home as leftovers. The restaurant did have a very enticing bananas foster bread pudding dessert, which I could not resist. Bananas foster is one of my absolute favorite desserts (two years ago, I went to get it at Brennan’s in New Orleans for my birthday). I guess it’s going to become a tradition.
Thomas and Alexander, the nephews who are at Michigan, decided to come to Chicago for a short visit after their finals. In addition to eating, we did make it out for some events, including seeing “Familiar” at the Steppenwolf and the Christkindl Market, where Aiday and I added this year’s commemorative mug to our collection. The Steppenwolf show was one of the more enjoyable productions we’ve seen, full of humor and relatable themes, particularly as it’s about how an immigrant family assimilates to Minnesota. I highly recommend seeing this show. In addition to the entertainment value, it did spark a lot of discussion. Thomas and Alexander got assigned front row “pit” seats - the seats can’t get any closer to the stage.
Of course, eating a big part of the reason they came to visit. After a semester left to their own devices, they figured to eat well in Chicago, returning to some favorite places and trying out new ones. The itinerary included Honey Butter Fried Chicken, Girl & the Goat, Fat Rice, Daisies, as well as the international McDonald’s (the McSpicy is long gone, though) and Sushi Para II (we certainly got our money’s worth at this BYOB, AYCE sushi place). The favorite dishes from the weekend of eating included the scallops at Girl & the Goat (I like how she incorporates Asian flavors into the dish), the giant (U-5!) chili prawns at Fat Rice, and the duck special at Daisies. While the meal at Daisies were good and the pastas well done, it wasn’t as memorable as some other places. We ended up going to Chinatown for a snack afterwards (I kind of had a craving for beef fried noodles that night).
Besides eating with my nephews, Aiday and I also ate out with Seng and Gisela (they visited for a few days after Ann Arbor) and on our own as well. Mostly, we revisited some of our usual spots - Boka (for a snack after another Steppenwolf show), Oyster Bah (great Happy Hour menu), the new Parson’s location (though I couldn’t order the spicy chicken), a return to Tanta, and visiting our friends at Mango Pickle. At Tanta, I was able to eat some of the polleria sauce, which has some spice. I’ve tried to find a recipe for this but to no avail. I think it’s got mayonnaise, garlic, cilantro and some combination of peppers. Anyone know of this? At Mango Pickle, the lamb dish was really excellent. It was tender and flavorful, and at a spice level I could handle. I could eat some of the other dishes they served, like paneer and mushrooms, but the biryani was still too much for me at this time. I can’t wait to eat more Indian food.
Of course, we tried to balance some of the eating out with cooking at home. Just like going out, we made some favorites and tried new recipes. Some of the new recipes came from Samin Nosrat’s Salt Fat Acid Heat book, which has been featured seemingly everywhere. The roast Persian chicken turned out fabulously. This is a variation on her roasted buttermilk chicken recipe. For the Persian chicken, we made a marinade of yogurt, crushed saffron and salt. There is so much flavor in the skin and the meat was moist. Aiday also used one of the recipes for a pastry dough to create a variety of baked apple tarts. Those were great too, with a nice and flaky dough. We’ll probably stuff them with more apples next time. Finally, we made the 48 hour short ribs again and had them on Christmas. Aiday took her turn searing the meat with the blowtorch, before plating it in her own unique way.
Finally, after much discussion and debate, a long-time “decoration” feature of the condo changed. My wine bottle collection on top of the cabinets is no longer. This was a topic that tended to generate strong opinions on both sides, as well as commiserations from others who faced similar dilemmas. All of the wine bottles have come down, though their ultimate fate is uncertain. (I also got to clean the top of the cabinets afterwards.) Some went to recycling after taking photos. Other bottles will go to storage for now until we can figure out if/how to get the labels off. These bottles are the ones that are the most memorable. For example, these bottles includes ones from when Seng and I biked through Burgundy, an eye opening Meursault, from the first case of wine I ever purchased (Pine Ridge Stag’s Leap District 1999), fabulous dessert wines (Chateau d’Yquem, Cappellano Barolo Chinato), others from sharing with dear friends and more. We’ll have to find a place for them somewhere.
For those bottles, we did make some wishes for 2019 and then sealed off the bottles. Hopefully our wishes and your wishes for the upcoming year will be realized.
