It’s hard to believe that a year has passed since my last scan. Much has happened since then:
(1) My oncologist at Huntsman Cancer Center, Ben Maughan, accepted a position at UT Austin as head of GU oncology. Maybe I’ll find out whether Huntsman has assigned another oncologist to my case. Hopefully, I’ll just stick with Ben’s PA, which would mean that my scans are negative and I don’t need to talk with a doctor. The preliminary reading of the scans didn’t show any metastatic activity, so unless the radiologist finds something unexpected, I’ll wait another year for my next set of scans.
(2) I completed my 6 years of service as a patient advocate for the Bladder Cancer Task Force, a part of NIH’s National Cancer Institute, just before Trump and Musk and Kennedy started gutting NIH and arbitrarily killing research, aborting clinical trials that were years in study, and offering buyouts or layoffs will all the subtlety of a guillotine. The absolute idiocy and shortsightedness from the Hate House at 1600 Pennsylvania Ave is astounding. May the idiots responsible for this Reign of Terror end the same way as did Robespierre. Meanwhile, I still consult on an ad hoc basis for non-governmental research institutions and try to keep current on the latest bladder cancer therapies.
(3) In non-cancer health news, after my left hip started aching and x-rays showed arthritic decay, an orthopedist suggested I try semaglutide and shed some weight, so I did. I’m down over 60 pounds and at times feel like Ronald Reagan in King’s Row: “Where’s the rest of me?” I think I’ve plateaued at around 205-215 pounds, and wonder if I stop taking this stuff, will the rest of me magically reappear. I’m keeping my XXL Harley Shirts just in case.
Meanwhile, since I couldn’t lay on my left side to sleep due to my hip pain,I decided that I might as well try to break my addiction to Ambien I’d been taking continuous release Ambien since 2012, when the leaking from my neobladder would jolt me awake. The guidelines say not to take it for more than 6 weeks, but my doctors saw that I had terminal cancer, shrugged their shoulders and said what the hell and kept renewing my prescriptions. Now that it looked like I might not die prematurely from metastatic cancer, I started asking what it would take to stop taking Ambien. I learned that Ambien is harder to stop than heroin, alcohol, or at videos on Reddit. Ambien retires the brain, and it takes up to 18 months of being off the drug until the brain can repair itself. I’m now 12 months in and sleep is still inconsistent and elusive.
While working with the University of Utah sleep center, the doctor noted that my blood oxygen level was drooping more than 3% 20+ times per hour each night. She recommended CPAP, but also noted my resting pulse rate was 35. She sent me to urgent care for an EKG. Ten minutes later I was on my way to the Emergency Room. Apparently I had a Mobitz Type II block in my heart, which meant that the bottom chamber of my heart was contracting less than half the time as my upper chamber. Instead of going to a Hawaii as scheduled, I had a pacemaker installed. The cardiologist told me that the pacemaker likely would resolve my low blood oxygen levels, and sure enough it did. No CPAP for me. Yay!
And if that wasn’t enough, a month after I got my pacemaker, I had a left hip replacement. I immediately was pain-free. No more taking stairs one step up with both feet, resting, then taking the next step. No more pain when trying to put on my socks. No more pain when trying to sleep in my left side. Compared to my left shoulder replacement in 2024, recovery was a breeze. I used a walker the day of my surgery, then never touched it again. I used a cane for 3 days, then put it away. I can now walk up and down hills without pain, can jog and even run (for short distances). I’m looking forward to skiing, which I have not done for 2 years. Hopefully this winter will have better snow than last year.
(4) Last summer, Lindsay and I completed our remodel of a 100 year old house in Sugar House SLC, and I sold the split level in Huntsville. Slade’s moved from Huntsville to Missouri last May so my time in Ogden Valley is over.
(5) Despite my physical limitations, I was able to do a good bit of traveling. Lindsay and I spent the month of October in Italy and Greece, spending the first week in the western lake region (Orta, Maggiore, Como), then meeting my daughter Kirsten and son-in-law Jason for 10 days in Tuscany. After they returned home, we relaxed at a spa, then saw it was going to rain across Italy for the next 10 days, so we flew to Crete and soaked up the sun. Getting a pacemaker derailed our planned trip to Hawaii in February, so in May we spent 12 days in the ABC Islands (Aruba and Curaçao). We’re planning a trip to France for all of July, focusing on Normandy with a week in Flanders and a few days in Paris at the end. Spencer will join us for the first 10 days.
(6) Kirsten gave birth to her first child in April, so now I am blessed with nine grandchildren. It’s wonderful to see the circle of life continue. I remember wondering when I was first diagnosed with metastatic cancer in 2012 whether I would see any of my grandchildren. Now that my current remission seems to be durable (six years this month!), I look forward to many happy years of being a grandpa.
