EZ’s Travelogue

Monday, June 19, 2023. Departed Mesa, AZ at around 9:00am. Arrived Las Vegas, NV around 3:00pm and checked into the La Quinta Airport South hotel on Surrey Street. Traveling, we often stan at La Quinta inns because we travel with our dog, Dak, and La Quinta is reliably dog-friendly. After check-in and unpackking, we called my sister-in-law, Margaret Moyes, who is a long-time resident of Las Vegas, Margaret is my brother Ronald's widow.

Tuesday, June 20, 2023. Breakfast at the hotel. Lunch with Margaret at an In-N-Out. Dinner that evening at a Bonefish Grill restaurant weith Margaret and her daughter Penny.

Wednesday, June 21, 2023. Drove to Twin Falls, Idaho up highway 93. Our lodging there was a Motel 6 as it was just about the only dog-friendly hotel available in TF this time of year for less than $400/night. Had dinner at the Redhawk Grill, on the patio, overlooking the Snake River Canyon, Blue Lakes Country Club and the Perrine Bridge.

Thursday, June 22, 2023. Breakast at Shari's Restaurant with Glenda's sister, Laurie Baum. After breakfast, Laurie accompanied us to Sunset Memorial Park where we paid our respects at the headstones of Glenda's parents and grandparents. We had lunch at the Depot Grill with our daughter, Anne Moyes Johnson, and her adult son, Michael, who lives with her. It's worth noting that the Depot Grill has been in business in Twin Falls for nearly 100 years and still serves excellent food with great service and their prices are about half of what we've been paying at other places. After lunch we went back to their apartment and sat and visited for the rest of the afternoon.

Friday, June 23, 2023. In the morning, we picked Anne up and drove to view sites of family history in the Hazelton and Murtaugh areas. We saw the home where Glenda's parents lived when she was a child, and her grandparent's (Baum) home next door. We drove past Valley High School and into Hazelton to view the home at 260 Lenz Avenue that Glenda and I lived in when we were young marrieds. This home had been purchased by my brother Ronald for a retirement home for my parents, but my father passed away too young, mom was unable to live alone, so Glenda and I purchased it from Ronald and lived there until I joined the Air Force in late 1972. At that time, the home was sold. We took Anne home before noon as she had another appointment. That evening, we met with my classmates from the Class of 1968 at Valley High School for a buffet dinner at the Snug Lounge in Eden, Idaho.

Saturday, June 24, 2023. Glenda slept in. I met my Nephew, Keven Jensen, and his wife, Donna, for breakfast at the Depot Grill. Keven and Donna live near Gooding, Idaho. It was a good visit. Dak and I then went to the annual Idaho Chariots car show held at the Twin Falls City Park. Lunch was at 2nd South, Idaho's first outdoor food court. That afternoon, we drove to the home of Ron Cline in Hazelton where the Class of '68 met for a picnic in Ron's back yard. The picnic was followed by a stunning fireworks display. Hazelton always celebrates Independence Day on the last weekend of June, thus getting a jump on the sales of corn dogs and cotton candy over the other small cities.

Sunday, June 25, 2023. A week on the road. Glenda and I met my nephew, Michael Jensen, at the Depot Grill for breakfast. Michael lives in Blackfoot, Idaho, but this week was supporting his granddaughter, Krissi, in a girls summer camp she runs in the South Hills south of Hansen, Idaho, which put Michael much closer to Twin Falls than he would have been at home. At 11:00, Glenda and I checked out of the hotel and drove into the Snake River Canyon to Blue Lakes Country Club, where we had the final event of my class reunion: a buffet lunch at the club overlooking Bass Lake. A wonderful lunch and visitiwith classmates. Leaving the luncheon, we drove to Salt Lake City, Utah, and checked into the SLC Airport La Quinta.

Monday, June 26, 2023. Breakfast at the hotel. We then drove to the home of my niece, Denine Moyes Smith, where we had lunch with her and her husband, Steve. Before we left their home, their daughter, Andrya Smith, returned from errands and we were treated to a visit with her, too. Denine is the eldest daughter of my eldest brother, Warren Arlo Moyes, now passed. After a nwp back at the hotel, we drove to Bountiful, Utah, and the home of my cousin-by-marriage, Joyce Goodman. Joyce is the widow of my cousin Eldred Jay Goodman. He was the son of my father's eldest sister, Annie Moyes Goodman. Also there were Joyce's two daughters Vicki Goodman Moody and Valie Goodman. We had really great visit. Vicki fed us croisant sandwiches and fresh fruit for dinner. We shared notes on genealogy and shared many family pictures. Joyce, now 92, is the mother of many others, including Lance and Julie and Earle Jay who were my playmates when I was a pre-schooler in Murtaugh, Idaho. I was often a guest in their home, first in Murtaugh, later in Pocatello, Idaho, then this home (at 847 S 150 W, Bountiful, Utah). This is really the first time I've had a chance to visit with and catch up with her family news since I joined the Air Force in 1972. Vicki had been encouraging me for years to make this visit. I had earlier discussed this visit with cousin Bill Goodman of Mesa, AZ, who encouraged me to kake this connection.

Tuesday, June 27, 2023. After breakfast in the hotel, we will drive south to Flagstaff and another La Quinta, where we will visit with cousin Evelyn Bush Patterson. She is also a cousin to the Goodmans.

Wednesday, June 28, 2023. We will drive home to Mesa.

Thursday, June 29, 2023. I have my third infusion for Melanoma at MD Anderson Cancer Center.

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.

Only time will tell if it's EZ

 April 26, 2023. Mesa, Arizona. 

Well, I start Immunotherapy at MD Anderson in Gilbert, AZ on Tuesday, May 3, 2023. Time will tell.

Quick Changes May Be EZ for Some

 April 24, 2023. Mesa, Arizona. 

Home from my pre-op appointments at MD Anderson. Glenda and I spent from 7:30am until 1:00pm at the hospital. I am not happy.

At the meeting with the radiation oncologist, we went over their procedures and discussed all the options there, but the doctor said that after reviewing my case with the immunology and surgery oncologists, his opinion was that radiation may be a adjunct to surgery--after surgery--but, depending on what they found, may not be needed at all--so no restraining mask preparation or practice sessions at this time.

I had my lab work drawn and my EKG done, then we had a nice light lunch in the cafe.

At the meeting with the surgeon (who is my case manager) he confirmed that surgery, for me, was agreed by their tumor board to be the first best action. We discussed all aspects for a half-hour or so. He answered questions for Glenda. We agreed to keep May fourth as the date for my surgery, with a 7:30am show time.

As he prepared to leave he decided to give my ear and the area around it a last cursory examination. After a quick look he got out a flashlight and gave it a second look at which point he said, "Oh, my." Then he got out his camera, took a couple pictures and sat back down. Verdict: my melanoma is being very aggressive and has visibly worsened in a few days. I knew that. He said that perhaps two months of immunotherapy prior to surgery would be prudent after all. I'm to leave the 4th on the calendar for surgery for now, but he's meeting with the immunologist this afternoon to discuss. So, again, we wait for a call

...but this now seems most likely: 8-12 weeks of immunology treatments followed by surgery, followed by reassessment at that time for adjuvent radiation therapy and then an additional year of immunology therapy regardless of yes or no on radiation. I shouldn't need a driver for immunology therapy, but I should have had one for the drive home today as I was not in a good mental state to be driving.

I missed an exit.

Twice. 

And it's back...

The melanoma in my right ear lobe is back. I noted a small, irritated lesion in early February. I called the triage nurse at MD Anderson. She conferred with medical staff and told me to see my dermatologist. It took a couple weeks to get an appointment with the dermatologist. By then, there were a number of small lesions on and around my right ear lobe. She said it didn't look like a cancer and prescribed a 10-day course of anti-viral and antibiotic medicines and a steroid cream for the ear. During that time it got continually worse. At first follow up with her, mid-March, she took a biopsy.

I got the results on Thursday, March 30, 2023. Positive for melanoma. By now, the entire ear is inflamed and there are at least 8 lesions on the external ear, plus I have a swollen, sore, red spot on my neck just below the ear. I have an appointment Monday, April 3 at MD Anderson for ultrasonic scan of the head and neck and evaluation by the clilnician. Ironically, this appointment was made in December, as a routine follow up to the surgery which removed melanoma tissue from my ear and three lymph glands in my neck after my October 28, 2022 melanoma diagnosis.

This is my fifth positive cancer diagnosis to date.

Thursday, April 6, 2023 I will go back to MD Anderson, this time for a repeat PSA test and CT scan to see how the possible reaccurence of prostate cancer is faring.

Oh, but the broken rib has apparently healed well -- no pain or problems in that area.

Stay tuned.