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.
Mike
J. Michael Jones 
13 responses to “Health Update: 9/4/20”
glad things are stable or a bit better. Love to the pup and well wishes for her healing. time to go public with this insurance company’s antics? Nice spot on TV? Very happy you are doing so well.
LikeLike
All these years I’ve fought for patients against the insurance situations. Now I feel it for myself. I hope things have not been too hot for you this summer. Do you have some elevation there?
LikeLike
Such great news on your health Mike and the changing work hours for your wife. That will be so nice for the both of you. I’m sorry to hear about Greta’s injury. I’m not one who has lost interest in your health posts..or others for that matter. I’ve been depressed after losing my second dog in 9 months. Last November I lost our Cavalier Riley who was almost 13 to heart disease and now his younger brother Kaden was only 10 and we lost him beginning of last month. He also had heart disease but it progressed so fast and meds couldn’t stabilize him. He was my heart dog..my adventurist companion. I’m lost without our iconic duo. I hope you continue to improve..prayers going out for you and your family and that includes sweet Greta!
LikeLike
Losing a dog is near losing a human family member isn’t it?
LikeLike
For me it certainly is but I know not everyone feels the same. I was just reading back some..I’m so sorry about the loss of your brother. You have had so much to deal with already.
LikeLike
I’m glad you’re stable Mike! Your posts really put life into perspective for me personally. I appreciate your raw emotions & words. I would have never thought something like a glass of OJ would be a small enjoyment for me, but a significant enjoyment for someone else. I’m sorry to hear about Greta, I hope she can recover quickly. I also miss seeing Denise at work but I’m happy for her 😊 I hope you continue to do well!
LikeLike
That’s great news except for the dog and medicine. Always praying for you and glad Denise is on to a new job. I am hobbling around right now since I had partial knee replacement surgery last week. Mike about your medicine Margaret got the copays reduced since her doctor wrote that this medicine was necessary and life threatening if not on it. You might try that.
LikeLike
Don, I’m sorry about your knee and I know what a damper that puts on your walking. I hope you heal quickly. Greta will relate as she will have to have a new knee. Regarding having my doctor write a letter, well, we are far beyond that. He did that about 2-3 months ago. I’ve been fighting this daily since with countless foundations, insurances and etc. Yesterday, we reached an impasse as we have exhausted all options.
LikeLike
It’s so good to hear that things are mostly looking up, but that’s sure discouraging about the insurance. Have you tried “Get Jesse”? My prayers for you continue.
LikeLike
Funny, but I tried hard to “Get Jesse” when he was on another network, in behalf of a patient with the same problem as me. However, I never head back. I think they must be inundated with requests.
LikeLike
Mike- I agree having normal lytes is huge. Also the GFR trending in the right direction is encouraging. Sorry to hear about Greta. I wish her the best for her surgery. Reading Ristretto Rain now and enjoying it. All the best.
LikeLike
Thank you Eric. Don’t know how you have time for anything these days.
LikeLike
I’m glad that you are doing well,miss you lots,keep thinking about you lots too.
LikeLike