It is only fair, since you dear folks bore with me during the times I was contemplating putting a bullet through my head, that when there are times of good news that I should share that too.
First of all, I reported in January that my cancer had a sudden surge (one of about about four markers). My light chains suddenly tripled, which can often mean the cancer itself is coming out of remission. But then it plateaued and now it is back to the pre-surge level (still three times normal, but stable). I am deeply gratefully for that as it indicates my cancer remains in good-partial-remission since the bone marrow transplant.
My renal labs returned yesterday the best they have been since I got sick. In case you are medical, my estimated GFR was 26.7 (started at 4 two years ago). While this is still less than half of normal, it puts me further away from dialysis.
Related to improving renal function, my electrolytes are now staying very normal. When they were running high (a year ago) it created a culinary nightmare (a little melodrama okay, starvation is much worse). I had gone off meat. But then I couldn’t have any sodium (salt) and no foods, such as most fruit, many vegetables like tomatoes, that were high in potassium. I was eating plain noodles most of the time, with an egg thrown in for protein now and then. But now my palate has been liberated! I could eat spaghetti WITH SAUCE, three times a day. I am looking forward to making authentic Neapolitan pizza.
I am feeling very good for most part. My anemia, which I will always have now, limits me. But still I climb Mount Erie twice a week and do many other hikes in-between. I did my first 2-mile run. Not fast, but it felt good.
It was about as devastating for me as the cancer itself, being laid off by my employer when I tried to go back to work. My clinic lost money when I was sick (duh) and therefore I no longer had value to the institution. But, I’m recovering from that awful setback. I am volunteering doing COVID vaccinations for the county. I hope to do it even more when I get the diarrhea under control. So good to be with “patients” again. I love patients!
To keep my sanity during my forced retirement, I’ve been very busy. I just built a pizza oven, official Italian design and of restaurant size and quality. I am restoring my wooden sailboat, which was left delict in the weather during my illness. It had been taken over by a very pregnant squirrel, who found it accommodating. I just wish she didn’t have to chew up my sail for her nest. I’m almost done with that. I’m doing many other chores including getting our land ready for goats and a stone cottage, I hope to be building soon. As I mentioned last time, I’m taking a break from working on my new novel while a group of “beta-readers” (like a focus group) review it for suggestions.
I did have a set back of 5 weeks of continuous diarrhea, which was wearing me down. It is most likely colitis, which is a common post-transplant complication. However, going back on steroids seems to be working.
Lastly, my neurological symptoms, which were a friggin nightmare, continue to slowly improve. I have chunks of time, maybe an hour or so, with no twitching.
I want to thank you for your continuing prayer and support. I’m feeling some light, although the tunnel is still long.