Month 191 – Calm before the Storm – Dan's Journey through Prostate Cancer

It’s been a busy time since the last regular monthly post, but in a good way.

I managed to unplug for five days by taking a trip to chase autumn colors in the Eastern Sierra using Bishop, California as my base. I was a week or two early, but still managed to find some good colors. When I returned, I was Mr. Social Butterfly, going to one of the San Diego Padres’ last home baseball games; attending a friend’s birthday party; going to our monthly trivia night with friends at a favorite watering hole; and then watching the Padres beat my hometown Chicago Cubs, all in my first week back. It was good to disconnect and be distracted for a while. I needed that.

Before leaving on my trip, I participated in an online advanced prostate cancer support group run by the AnCan Foundation. (I had featured one of their videos on this blog back in April.) Within the group, there were a few doctors but pretty much everyone else were fellow prostate cancer patients sharing their experiences.

There was a ton of information that was flowing, so it was a tad like trying to take a sip of water from a firehose, but I did come away with some valuable input. Key points included:

Different experiences on different ADT + ARPI drug combinations when it came to side effects. The consensus seemed to be Orgovyx^® and darolutamide were the preferred combination.
There was also a recommendation for me to push to get an Axumin PET scan given the four negative PSMA PET scans and the negative [F18] FDG PET scan.
One of the members strongly encouraged me to connect with Dr. Matthew Rettig who operates out of the West Los Angeles VA Medical Center and UCLA. (When I searched on “best prostate cancer medical oncologists in Southern California,” his name was number two on the results.)
They encouraged me to more thoroughly investigate a VA disability rating given the changes in how prostate cancer is addressed under the PACT Act. That’s low on my priority list for a variety of reasons that I won’t go into here.

I have to admit that, given my trip, my social calendar, and my need to unwind from both, I’ve been a bit slow in digesting the meeting’s contents and determining how I want to proceed.

Dr. Rettig’s opinion would be valuable at some point, and I’m just figuring out how and when to do that. I have the CT and bone scans scheduled next month (see below) and, to be honest, I don’t expect that they’ll show anything. I’m thinking that a set of negative results on those scans would give me strong justification for getting an Axumin scan and for the referral to Dr. Rettig. I can say, “I tried what you recommended. Now let’s humor me and find a way to get the Axumin scan.”

The VA can be a bit rigid in its protocols and procedures, and I’m inclined to go through the medical oncologist at VAMC San Diego to get the referral to VAMC West Los Angeles. I don’t want to be stepping on anyone’s toes, or finding out that I’ve inadvertently transferred my full-time care to Los Angeles. (The 147-mile / 236 km drive between home and VAMC WLA is brutal.)

For now, I’m content to wait the six weeks until the scans, get their results, and then push to see Dr. Rettig and go for an Axumin scan if needed. I should have an updated PSA test result at that point, too. Of course, I reserve the right to change my mind. 🙂

As I’ve been writing this post on Friday night, 9 October, I’ve had one ear open on the forecast for Tropical Storm Rachel, which should be arriving in the San Diego / Tijuana area in about 24 hours. The National Hurricane Center issued a Tropical Storm Watch for San Diego, and this is only the second time ever that a tropical alert has been issued on the west coast. (The last time was in 2023 for Hurricane Hilary. The last time a tropical system actually made landfall on the California coast was 1939.)

UPDATE 5 P.M. PDT, Saturday – Rachel’s forecasted track has moved a bit to the east. Friday night, it was going to pass about 17 miles / 27 km from my house near Tecate; the current track has it passing about 85 miles / 137 km east of my house near Mexicali.

It looks like the brunt of the storm will kick in around 11 p.m. and last through about 10 a.m. tomorrow. One forecast model shows wind gusts in my neighborhood will get up to about 45 mph / 72 km/h. It the mountains east of San Diego, it’s showing they may get up as high as 90 mph / 144 km/h.

The reason I’m so interested in tropical systems is because I rode out Hurricane Iwa which hammered Oahu (where I lived) and Kauai in 1982. It was quite the unnerving experience, About 2 years later, one of the ships I was assigned to got caught up in the periphery of a typhoon while we were at sea, and waves washed away one of our inflatable life rafts. Experience tells me to heed the warnings and take precautions. Better safe than sorry.

More to come. Be well!