I know this saga has now entered its 20th month, so I don’t blame those who have lost interest. The other, good reason, that my updates are not as important, is that I’ve been stable. . . and remain so.
I just finished my testing for the month and the values are in. Basically, my kidney function is slightly improved, after worsening last month. That is always good news. My GFR (best measurement for kidney function) is now 22.5 and was 20.7 last month. > 60 is normal.
But also, my electrolytes were all very normal for the first time since I’ve been ill. This is profoundly important to me because I was on a miserable diet for months (only plain oatmeal for breakfast and plain noodles for lunch and dinner). With my potassium being so normal now, I ate a tomato sandwich yesterday, with one of Denise’s garden tomatoes. This is my favorite food and I had to avoid tomatoes (high potassium) for the past year. My next dream is to have a glass of orange juice. I may do that next week. I have also had to avoid citrus for the past year.
My cancer is still in partial remission, still present, but low counts and stable for the past six months. I will have a full body scan next week to look for “extramedullary lesions.” This is another term for cancer spread outside the bone marrow. I have an appointment at the Seattle Cancer Care Alliance in three weeks and I’m looking forward to that, to get their direction on care.
Overall I’m feeling quite good. If it were not for my modest anemia (and my neurological problems) I would be normal. I’ve now climbed our Mount Erie five times. It is hard, due to the anemia, but I can do it.
Speaking of hiking, my dear hiking pal, Greta the Saint Bernard, had a serious leg injury last week on a hike. She will have to have surgery to be able to walk on all fours again. That will not be until October.
Ramsey, my son, was a godsend. I don’t know how I made it through March until May without blowing my brains out. It was the perfect set-up for serious depression. Cancer, almost complete isolation, and dark skies. Ramsey came home (after testing negative for COVID) and lived for 3 months. I can’t believe those days expired so quickly.
Denise has quit her 12 hour per day hospital job. It has been nice to have her home. She starts a new job in two weeks. It will not be as isolating as before for me, as she will work some from home and then when she is away, it won’t be for 12 hours per day.
I hope all the above came across as positive (except for poor Greta), because I mean it that way. If there is one negative, it is the fact that we finally dialed in the perfect chemo with very few side effects, but now the insurance company will make it cost-prohibitive ($2600/month copay) and I will have to come off. I have spent hours and hours on the phone for the past 4 months over this and at times it has left me emotionally exhausted. I picked this insurance because they told me in April that they would cover this med, except or a “little copay.” They could not tell me the amount at the time. Then I go to fill it and am told this outrageous copay amount.
I am still house painting and doing chores like the rest of you. I am near the end of my first draft of Retribution. It has been fun living in Yemen within my imagination for the past two months. I hope all of your are doing well and that you too have mostly good things to report.