Checking in, 2022
18 October 2022
Dear all,
It's been a year, almost, since my last "wellness check". Ha ha!
I keep on getting distracted and then the Givealittle page logs me out and I lose my update. I should learn from this mistake, but instead I am foolishly charging ahead.
Hopefully I will be able to maintain a stream of consciousness and stop randomly clicking on tabs. These are the things that are distracting me from finishing this post in a timely, time-bounded fashion:
1) My son the Shoot, now 10, is very depressed about doing his piano practice and I have to keep getting up to nag him. Joseph is practicing with him now, after the Shoot spent 50 minutes sitting at the piano bench. What was the kid doing all day!? He was listening to Harry Potter audiobooks! Argh!
2) The kids are involved in this little community nature education/weeding group I organized, called the Wetland Rangers. Across the street from our house is a little natural area / nature reserve called the Mehraban Wetland Park. (You can google it.) It is small but unfortunately the ponds are experiencing algal blooms because of the low water (due to our ongoing climate-change-induced drought) and also because of high nutrient runoff. Furthermore an invasive weed called phragmites is spreading aggressively and trying to take over. It is like the cancer of plants in Utah. So naturally I hate it with a passion. The Wetland Rangers got a grant from the Utah Native Plant Society to install educational signs in the wetlands to educate community members about the "good" and "bad" plants and give them something to do about them. We are trying to get these plants ready to print tomorrow and so I keep on jumping back to our Canva file which I am proofreading and to check that the kids' original art gets included in the signs for river birch, cottonwood, coyote willow, phragmite, Russian olive, box elder, curly willow, crack willow, etc.
3) Joseph brought home mango mochi ice cream from the local grocery store. I got up twice to eat two. Yum.
4) I am speaking at the Draper City Council meeting tomorrow to ask the city council members to invest in helping to solve wetland problems. Right now the engineering department is claiming that the big pond right in front of our house is not actually a recreational pond but is a stormwater catchment basin, i.e., a big puddle. "We do not maintain or invest in improvement for big puddles," they told us. However, in the use of the pond, it is clearly being used, by the public, as a recreational pond. Members of the public use the big pond just as they use the little pond (an "official" or bona fide recreational pond, according to the city). The state fishery stocks the big pond with fish just as they stock the little pond. I wrote a letter and popped out to the HOA meeting tonight to get my neighbors to sign it. I am going to bribe the Shoot to help me make the presentation tomorrow night for maximum cuteness/memorable-ness impact.
5) I ate leftover fried rice. I always make fried rice the way my mother made it, with crispy rice. To do this, first you stir-fry all the non-rice items, like the carrot, celery, onion, eggplant, green pepper, sausage, tofu chunks. Then you tip them into a big bowl. Then you clean the bottom of the pan, add generous oil, and dump in leftover white rice from the fridge. Then you let it fry on medium heat until the rice becomes golden brown. Then you flip the rice and let the other side start to brown (but not for as long as the first side or else you will get burning because some of the rice will have started to stick). Then you dump in all the other wetter ingredients and mix together. Then you add seasoning like salt, pepper, possibly a little chili, possibly a little cayenne. I was taught by this old lady who lived next door to us in Hefei that it is always better to go light on seasoning to preserve the "original flavor" of the food ingredients themselves, like the vegetables. She was a cool person. I went shopping with her once. We walked around the market stalls and she was muttering to herself, "What kind of veggie do I want to eat today?" There were so many options from the many varieties of cabbage to bitter melon to sweet potato greens to chrysanthemum greens to spinach, bok choy, baby bok choy, Shanghai green, eggplant, etc. Unfortunately the Shoot does not like eggplant. This particular bowl of leftover fried rice had a high eggplant to other ingredient ratio because the Shoot had picked out the eggplant and put it back into the bowl before eating.
So oh boy, I'm glad that I'm still typing. I have virtuously stuck with this task. I get after my kids for playing video games but look at me! Attention span of a goldfish!!!!
This is where I am with health:
Several months ago the immunotherapy I was on stopped working. Cancer starting progressing. CEA (tumour marker) was steadily rising. I was now in the land of "well, sorry, all of our tricks are used up, and you will have to try random science experiments / cutting edge research / clinical trials."
So I tried a clinical trial at City of Hope in Los Angeles in June 2022 and I was really excited about this one because the thing they were using had achieved super awesome results in another trial in Germany. But this one turned out to be rubbish and did nothing at all, which was sort of annoying because I paid for it by myself, because my work insurance doesn't cover clinical trials. DMBA prides itself on being "really good insurance" or "better than average insurance" but the problem is, the majority of insurances pay for clinical trials. DMBA has an extremely conservative philosophy and doesn't do any healthcare if is it new, progressive, or cutting-edge, because it considers those things bad. Therefore, it does not believe in benefitting from the medical innovations of the twenty-first century.
In July I went back to NZ for a week to teach the first week of my late imperial Chinese history class. This was super fun. I loved it so much. It was great to see so many familiar faces and to work with the Uni people again. Very interesting is, this was right in the middle of my "oh no the normal stuff is not working and the first clinical trial was rubbish so you are basically going downhill from here on out" crisis. I had a lot of pain, and could feel lots of weird stuff inside me, and had trouble sleeping. Strangely this pain and weird stuff is gone now, even before I started on the panitumimab regime I'm on now. Ah, it would have been wonderful to have stayed in New Zealand! But, I think if I would have stayed in New Zealand, I wouldn't be alive right now.
This sort of encapsulates the problem with different healthcare systems. New Zealand wasn't cutting edge enough because there weren't enough people to provide access to dozens of metastatic cancer clinical trials (both through funding for national healthcare and also through sheer numbers of trial subjects). But in America, even when you have access to these cutting edge things, your insurance might not pay for it and so it might be thousands or tens of thousands or hundreds of thousands of dollars. It is a real problem. I wish I knew the answer.
In all fairness, some of these clinical trials truly are science experiments that won't necessarily deliver benefit to me. In August I did a double-whammy clinical trial at the National Institute of Health in Washington DC. Both are, again, extremely cutting edge, and really cool science, but it's not looking like they will be super helpful. The more hopeful of the two clinical trials, which focusses on TIL (tumour-infiltrating-lymphocytes) didn't find anything they could use. The other clinical trial hasn't really helped anyone that much besides do some spot cleaning of the tumors (it disappears from the lungs, but not the liver, etc.), though this is still a cool idea. In August they harvested tons of lymphocytes from me and they are going to try to genetically engineer those lymphocytes to hate my tumour, and attach to it like a personalized virus and kill it. Perhaps I'll get some sort of marginal benefit from it? Maybe a slight shrinking of some tumours? It's apparently better than radiation therapy which has shown that the collateral damage is worse than the tumour control for people with my kind of cancer.
Anyway, the current status of me is: cancer is still metastatic, and has grown and spread quite a bit, but it's not as bad as it was before HIPEC in 2020, and it's not causing me any pain. Hopefully one of these clinical trials gives it a good mow and keeps me alive long enough to find something else that continues to prolong my life.
I climbed Lone Peak in September with the kids. I was super tired and Joseph had to carry my pack for at least two hours, but it was about 2380 meters (7800 feet) of vertical elevation gain. It was about 10 hours of stumbling uphill. But, the top was nice, and we saw mountain goats. I include a picture here from our camp just below the summit peak. The summit peak is a little overexposed but you can see it in the background.
The kids are all growing up. I have two teenage boys now which is challenging. The sullen silences! The blatant ignoring of me, the parent! Aaaaaggghhh!!!!!
OK, I'd better go before this form times out and I lose what I wrote. Things are going well. My cancer hasn't disappeared, and indeed is sort of slowly creeping up on me, but it feels a lot less dire than it did several months ago when I could feel it pressing against something and imagined, melodramatically, that I was being "crushed from the inside by many swelling fists". It did feel like that then, but the current treatment I'm on, panitumimab, has reduced the size of the tumours and also lowered my CEA. It won't last for more than a number of months, and it gives me acne and thin skin, but this has been pretty manageable. You can get used to anything! Life is interesting. Hope you are all well. Thanks for my life! It is good!
-
Thank you for the update, Melissa. I just had to comment about your 10 year old son and the Harry Potter audiobooks -- my 8 eight old daughter Clara is also totally obsessed with them! She listens to them overnight while she sleeps. Thinking of you and your family while silently annoyed about overnight audiobook listening. :)
