Update: 5/2/20

Someone made the comment that I had not done an “update” in a while and that they don’t read my ramblings. So, for the sake of those interested in my health and not these tangents I get off on, I will give an update.

I just finished my first three-week cycle of my new chemo (ninlaro). It is certainly much easier to use, swallowing one very expensive capsule per week rather than an infusion or injection. I think I can say that the terrible side effects I was experiencing are very slowly getting better. I mean I haven’t had diarrhea in three days and it was four or five times per day before. So, I’m optimistic. I just have to hope and pray that it is working on the cancer and we won’t know that for a couple of months.

My original symptom (cluster of symptoms), which are neurological are very, very slowly improving for the past 14 months. On good days I can go 20 minutes now and then without the twitching and other motor problems. On bad days, I still have multiple muscle groups jerking and twitching continuously. I’ve gone five weeks without any labs so I don’t have any information there. I do think my anemia is still better as my energy level reflects that. I have run three times now, each just a mile, but slowly picking up the pace.

As I mentioned in my previous Ramblings about navigating the crazies, we are all still in this same boat. I never knew how difficult it would be fore me having absolutely no contact with people would be. I did participate in a COVID-19 antibody study. I was hoping that I was positive, but I wasn’t. If I had been positive, it would allow me to be like other people where I could at least go to the grocery store with a mask on. But for now, I have to keep totally isolated as they predict that someone with my level of cancer, renal failure and age would have a 50% chance of death if I caught Covid.

Denise is still working long hours. Our marriage is stressed as I feel desperate to talk to someone. She has very hard days at the hospital and comes home talked out and does not want to talk to me but to watch a movie and go to bed (she gets up very early). But for the grace of God, I feel that I would be about ready to lose my mind. Again, I am thankful that I have a dog and I live on a lake where I can enjoy some space. But I think many of you can relate to these things.




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3 responses to “Update: 5/2/20”

  1. body{font-family: Geneva,Arial,Helvetica,sans-serif;font-size:9pt;background-color: #ffffff;color: black;}Great Update, MikePrayers sent for you, Denise and your marriage.love doug and judy


  2. Thanks for the update! Don’t you have someone you can messenger face time with? It would help at least to see the face that goes with thevoice e


  3. Thanks for the update. Hang in there. Glad you are feeling a bit better and hope the chemo is doing its job. Email me your phone number and perhaps we can chat if you like.


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