How EZ will life changes be?

Today, I made an appointment for a dementia care educator to come to our home to assess our needs for assistance and to identify resources that may help in providing that assistance.

This service is provided, at no cost, through the local Hospice of the Valley, a 501(c)(3) not-for-profit organization serving Central Arizona and is funded by a federal program. The home visit will be from a dementia educator who teaches behavior management strategies for dementias, and helps with medications, placement options and other available resources, and living wills. Our assigned educator is named Kobie. I learned of this program recently while listening to a local NPR program while working in my garage.

My concern is that my dear wife, Glenda, is showing very clear signs of memory loss. She has been evaluated by our primary care provider and by Dr. Ashby at the Barrow Institute in Phoenix. They have not diagnosed her with Alzheimer's, but verify some level of age-related dementia, possible related to the stroke she suffered in 2009. The memory loss becomes obvious in conversation with her and in the fact that she can't remember what year it is, who is our President, and such. She also has gotten to where she won't leave home alone, even for a local walk (with very limited exceptions) because she fears she won't be able to find her way home. In addition to the memory concerns, she is nearly blind from age-related macular degeneration (dry), and has balance, fall, and movement problems caused by orthostatic hypotension as well as incontinence problems related to age and birthing our five children.

I am her primary care giver and non-medical attendant. I cook and serve meals, clean, arrange medications, shop, provide all transportation, do laundry, help her with selecting clothing, manage her audio-book library and tools and more. We are both 73 years old. Here's the kicker: I am a cancer patient, currently receiving care for two different forms of metasticized cancer. Plus I have the spectrum of old, overweight, white-man health problems: High blood pressure, AFIB, aortic insufficiency, GERD, etc. My health and family history do not indicate that I'll have a life span equal to Glenda's. What happens when I am, for whatever reason, not able to provide the care she needs?

To be, or not to be. William said that that is the question. Our question is a little more complicated that that. I doubt there will be EZ answers, but I am hoping that the Kobie can help us understand what is needful and what is possible.

Will this be the EZ part?

Post-COVID, the work begins. Not the journey--that's been underway for some time, now.

My official diagnosis is, "locally advanced metastatic malignant melanoma" of my right ear lobe. I was treated with a wide local excision at the end of November, 2022. The post-surgery pathology did not show any spread to the sentinal lymph nodes in my neck (which were removed with the excision) but did show residual malignant melanoma in the ear tissue after the surgery. I have not received an adequate explanation as to why I was not offered additional treatment after the surgery and incomplete removal of the melanoma in November. I have now been staged as "IIIB."

I had my first immunotherapy infusion yesterday. The immunology oncologist laid out the following plan. Two cycles of infusion with combined ipilimumab (Yervoy) and nivolumab (Opdivo) three weeks apart. One week after the second infusion, I am to have another PET scan to reevaluate and to determine the response to treatments, and if favorable based on scan results, a surgical resection followed by nivolumab every four weeks for one year. The doctor says the intent of this treatment is '"curative," which sounds good to me. They have also sent tissue samples to Caris for NGS (genetic) testing.

The infusion process seemed relatively benign, took about an hour and a half, but I was comfortable in a medical recliner throughout. They even brought me a sandwich for lunch. My son, Benjamin, accompanied me to the appointment with the immunologist and sat with me throughout the infusion, then drove me home. Glenda (and Dak, our small dog) stayed with Ben's family at his home throughout the day. The love and support I'm getting from family (and from friends, too) is overwhelming and humbling.

I'm 24 hours post-infusion now, and have no significant side effects noted. I slept very well overnight.

Nope, My Life Ain't EZ

And now I have COVID. Diagnosed early Sunday morning at an ER. I'm feeling much better now, just 2 1/2 days later, but this infection has further delayed my first infusion to treat the melanoma until May 15th. This 14-day delay is due to the hospital's established medical protocol. 

Medical protocols are complicated things with lives of their own. They are established by committee with recommendations from the medics often conflicting with recommendations from the administrators, the accountants, the lawyers, and their insurance companies. Once in place, it's really difficult for an 'employee' medic (even more so for a contracted medic) to deviate from said protocols except in case of imminent loss of life or property. Our entire care for profit system has become a gigantic machine, accelerated by need and new discoveries and throttled by accountants, insurance companies, and lawyers. Once you are entered into the system for any particular need, you become an item on a conveyor belt. The system serves the 'typical' patient quite well, while serving the lawyers, administrators, and insurance companies even better. Less so for caring medics and those that don't quite fit into the mold. 

I've also applied to the Mayo Clinic Hospital in Phoenix to see if they want to take me on as a patient. Maybe I'll hear from Mayo next week. Same system, different machine.

And to make things more interesting, Glenda, my 73yo nearly blind and memory deficient wife, has a fever and fatigue tonight, so I'll probably have more to deal with to care for her tomorrow.