J. Michael Jones

I was waiting to give an update when everything was rosy, but that was a mistake. In this battle (if you ask anyone battling cancer), if anything is rosy, it is quickly guarded by issues in the other direction. I will give bullet point updates for the casual reader details for family and friends who want to know those things.

• Yes, I am still on dialysis. The rumors I am off was only wishful thinking. I will be on it for at least one more month and, if there is not enough improvement in my kidneys, for life. My kidneys were perfect before the cancer took them out in December. My kidneys are improving.
• I’ve completed my first round of chemo (start my next on Monday). The load of my bad protein has gone down from 3600 to 240. Normal people don’t have more than 26 (MG per liter of blood). So, we are heading in the right direction but have not arrived at our goal of normal. I don’t know if I’m “on schedule” or how I compare to other patients until I see my oncologist on Tuesday.
• How do I feel? It depends on the day and the time of day. If I only had the cancer and not the renal failure, I would feel close to normal, except for the chemo days, when I have something that is like a bad case of the stomach flu.
• My symptoms from the renal failure are my worst problem. I still have neurological symptoms from living a month with toxins in my blood that would have been lethal for most people (BUN 125, Creatinine 11.5, Potassium 6.9). Those symptoms are twitching, jerking of muscles, slow gut, and others. They are very slowing getting better. My toxins in my blood are almost normal now thanks to my own kidneys plus dialysis. But this can take time.
• I have new symptoms that are impacting my quality of life and these include tachycardia (105-125 resting), a constant headache that waxes and wanes between a 2/10-7/10, a cough that comes for a day and then goes away (and when I cough it sends my headache into orbit), and hypertension that comes and goes. I’ve discussed all of these with my doctors and no one has a clue what is behind them unless it is more symptoms associated with the renal failure or chemo or Myeloma or who the hell knows. I just want them to go away and no new symptoms to come. That would be profoundly helpful as I have enough on my plate.
• I have tentatively scheduled myself to go back to work PT on the 20^th. Much of the problem is working around dialysis three days a week and chemo two days per week. That leaves one day (Thursday is an overlap day for chemo and dialysis) per week to work right now.
• Denise is back at work about 60% and is getting caught up. She is resting well but of course all of this weighs on her.

Details:

My back story doesn’t add much else as my bullet points were quite comprehensive.  My spirit flows with how I feel physically. I am feeling stronger every day. I hiked a mile with Greta yesterday along the Tommy Thompson trail, in the snow. When I do a lot, house chores, hike, in town and etc., I often crash and feel terrible by 7 PM. I get cranky if Denise ask me to do things because I am so tired.

The plan is not clear yet. If my oncologist is happy with my numbers, we will continue the same treatment plan for at least two more rounds and then go to Seattle for evaluation for stem cell transplant.  I am a little worried about this tachycardia. I had a very healthy heart 4 weeks ago. If something is wrong with my heart, it could influence future treatments. My EKG is fine but there is no explanation.

I’ve talked to people with my exact same story and they pulled out of it, kidneys came back, stem cell worked and now 8-15 years later they are going strong. That’s the path I want to focus on.

I think Denise is doing well now that she is sleeping. I want her to get back into her exercise program. I want to drive myself to dialysis to free her up more to do her stuff.

Regarding my kidneys, One study showed that 12 in 16 who started like me, have fully recovered kidneys. Another study (not exactly the same) says on 5% recovery. Keep praying for them.

Mike