Oct 15, 2020 Latest post:
May 29, 2021
My 2020 start off looking good. A fun trip to Porto Rico and a Windstar cruise the first week of March. From there it has all been downhlil. So, a very quick summary of a very long and complicated medical journey with a little more information.....from Nicki, Jim’s wife.
We were working on what was going on with Jim's brain since early 2019 and then COVID blocked the road. Once we finally were able to move forward through a video appointment with a neurologist at UC Health in Denver, the results were confusing, and they thought it was normal pressure hydrocephalus-NPH (too much spinal fluid backing up into the brain). Even at UC Health they only see a couple cases a year. So, Nicki got on the internet and found a wealth of information at Mayo Clinic and requested an appointment. We were accepted, scheduled a date (July 20) and made plans to head out there driving our RV.
We were now at late June when a call came from our family doctor who was reviewing the many tests the UC Health doc had ordered, and he did not like some of the results. He referred us to another doc. When that doctor's office called to schedule an appointment, we learned he was an oncologist. UGH!! Thus, began our newest medical journey even before we had completed Jim’s brain malfunction diagnosis. After much more scanning, pricking, poking and bloodletting, Jim was diagnosed with multiple myeloma—a blood cancer in the bone marrow, which is considered incurable, but treatable.
So, took my husband to the brain doctor and came home with a husband with an incurable but treatable (so they say) cancer. Jim's cancer treatment started as soon as we return from Mayo Clinic (late July) using a biological drug administered subcutaneously—a procedure newly approved by FDA. Jim would be reassessed late September.
We did continued on our journey via RV driven by Nicki to Mayo/Rochester, MN--an awesome and amazing place--to have Jim tested for his neurological problems. The results are he absolutely has NPH which has treatments but because of his cancer and age, he is not really a candidate for any of them. However, all that extra spinal fluid muddies the diagnosis for anything else. In addition, multiple myeloma usually creates a little brain fog because of all those cancerous plasma cells floating around in the blood making it very thick. All the consulted docs are sure there is more going on (when in doubt, Mayo double and triple checks everything). I, for one, never considered the possibility there could have been more than one kind of brain degeneration occurring at the same time, but Jim blew that belief out of the water. The results of all the tests indicate he could have up to four or more additional brain deteriorating things going on. So, the best diagnosis they could come up with is "early degenerative brain disease complicated by NPH."
Because our life is so boring and mundane, we have purchased a townhouse which is getting rehabbed and have put our current home on the market in the next couple weeks. Timing sucks, but the perfect townhouse, which are few and far between in Glenwood, came on the market and we actually put it under contract while in Rochester at Mayo. One of the things that makes it so perfect is location--2 blocks from my daughter who is a nurse.
Jim is still mentally mostly very good. Talking to him or sitting across the table over dinner, you would hardly know there is a cognitive problem or serious cancer. The cancer treatments cause a lot of fatigue so frequent naps. He is very good at covering up and when he says or does something kind of off, most people just pass it off as a bad day, his age or something else. I struggled convincing doctors there was a cognitive problem.
Fast forward to Saturday, October 10….
Jim started running a high fever, was disorient, fell and I could not get him up so called the paramedics. They transported him to Valley View Hospital in Glenwood Springs. Here we sit for five days during which time he celebrated his 85th birthday on October 13 while incarcerated. And the source of the problem is….hmmm….? Maybe an infection that they cannot pin down. The really bad news is that we have learned the cancer treatment is not working and the multiple myeloma is get more intense.
More tests to try and figure out the source of the fever/infection and decisions on additional cancer treatment.
More later…..Prayers and good thoughts appreciated, Nicki