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.

The saga continues, and it hasn't gotten any EZer.

Since my last post, I have had surgery and a variety of scans (PET with contrast dye, echo-scan of neck soft tissue, PSMA with contrast) and surgery. The surgery was to remove the lesion that proved to be melanoma in my R. ear lobe. The PET scan and echo-scans were prepertory to that. With part of the ear lobe, the surgeon also took three lymph nodes from my neck on the R side for biopsy. After surgery and post-surgery pathology, they reported 'clear margins' on the ear lobe and negative for melanoma in the lymph nodes. That was done by Dr. Shellenberger at MD Anderson/Banner in late November of 2022. It is now March 8, 2023, and lesions (multiple) have appeared on my R ear lobe. They itch, and like the earlier granuloma, have a tendency to form blood blisters, pop untouched, and bleed profusely. I spoke to the triage nurse and MD Anderson and sent her iPhone photos of the ear lobe. She consulted with Dr. Shellenberger. He said I should see my dermatologist. So I did. I saw Ms. Mack on March 6, 2023. She consulted with another provider, then told me that it did not appear to be cancerous but they were unsure of what it might be. She prescribed Halcinonide cream (topical) and both an antiviral (Valacyclovir) and an antibiotic (Doxycycline), all three to be used for a 10-day course and then reexamine.

The earlier-mentioned PSMA scan was a result of my PSA test showing a positive result on the routine annual re-check on December 13, 2022. The results were low, only 0.03, but it has been non-detect for seven years, and should have stayed that way. I was referred to a different clinic at MD Anderson where I say provider Michael Snyder. He repeated the PSA with the same results then ordered the PSMA scan. The results of the scan were inconclusive -- no sign or active prostate cancer was found, but two spots that might be of concern for other malignancies were noted, and I've been scheduled to repeat the PSMA in April. I have to be sedated for the PET scan and/or the PSMA. They aren't as bad as an MRI for my claustrophobia, but more than I can do without some sedation.

Meanwhile, On February, 24, I fell on the sidewalk and broke a rib rib. Was seen at Dignity Health ER, Ellsworth/Elliot. CT and blood work. Clean break, rib #7 (4th rib, R side), 6mm displacement. Prescribed pain killers (hydrocodone/Tylenol and Ibuprofen) x 5 days. Dr. says will heal, but will hurt. 1-3 months normal for healing. Also on CT, report of gallstones, 'tiny' hiatal hernia, and atrophied pancreas. I discussed those findings with Dr. Klein, my PCP, and he was not concerned. At 11 days after the break, the rib still is excruciatingly painful under the 'wrong' circumstances, such as a sneeze.

My friend in Texas, who has the melanoma first found due to the pylogenic granuloma is having a very hard time. Her melanoma spread from a single spot on her leg to an outbreak of cancerous lesions 10 inches in diameter in a matter of weeks. She is being treated by radiation and chemotherapy, and is unable to walk or stand at this time, so can't work. And she's a single mother. Her melanoma was first diagnosed on October 28, 2022, the same day I was first diagnosed with the melanoma on my ear lobe.