Howling at the moon

I've held off on any new posts because my focus has been on holding my shit together while my wife is dying. Jennifer has been in memory care for more than six years due to her disastrous diagnosis of early onset dementia (frontotemporal dementia). She has been slowly declining and a couple of months ago was placed on hospice. She's transitioning. No one knows how long she will live. We've had active dying, vigils, rallies, stable status, and all of the misery in between. People look to me to be the source of information and coordinator of everything and it's exhausting. I don't know how many times I've been told that it's hard, they're sorry, blah blah blah. Tell me something I don't know. Worse is when people ask me what can they do. There is no socially acceptable answer that is honest. How about you find a cure for FTD? I'm bone-weary of putting on a happy face and placating others who just want a pat on their head and go on with their lives. 

Earlier this year one of Jennifer's doctor's told me that the woman I married 40 years ago no longer existed: FTD took Jennifer from me in 2017, but her body kept going. When I visit her each day, I feel that I am performing a duty while honoring the memory of a relationship. The crush of the passage of years has weighed down on my soul. I've looked for alternative sources of joy with some success: travels, spending time with family, long motorcycle rides, reconnecting with old friends, skiing. But the trip or the visit ends, and I'm right back where I was before, wading through my cesspool of loneliness and pain, witnessing the savage silence of my wife whither into nothingness.

My six month scans showed no evidence of disease. I am doomed to continue on alone. 

And so it goes.

Three years of remission, fewer scans in my future

Last fall I reserved a place in a University of Utah-sponsored tour of the D-Day Beaches and battle sites in Normandy. It was an amazing trip, led by a retired Colonel and our group of 17. It was humbling to stand on Omaha beach at low tide and look at the 500+ yards those Americans had to walk under murderous crossfire before they could even fire any weapons. Our guide told us that we could draw a circle with a 10 foot radius anywhere on that beach and it would intersect with a spot where a GI died on June 6, 1944. Yet they persevered and within six hours had broken through the beach defenses, starting the liberation for France and Western Europe. My 10-year old mother was living with her family in occupied Holland and eagerly followed the news of the allied invasion, eagerly awaiting the arrival of the American soldiers. It would take another eleven months for Germany to surrender. Six years later, my mother and her family emigrated to America. She carries with her a profound gratitude for the soldiers who fought to give her and the rest of Europe her freedom. As I stood on that sacred sand and later at the American Cemetery, I uttered a prayer of gratitude for those GIs.

The D-Day tour was a week long. I decided that I didn't want to just spend a week in Europe and considered my options, finally settling on Croatia. After briefly considering renting a motorcycle and exploring the country on two wheels, I realized it would be better to be joined by family. I offered to pay for the flights and lodging, and three of my four kids accepted (My oldest, Chelsea, is expecting and was unable to join us.) Each of the kids selected a different destination for the first week in Europe (Amsterdam and Prague for Spencer; Switzerland and Northern Italy for Kirsten and Jason; Paris and Milan for Garrett), then we all met in Dubrovnik. We explored the Adriatic Coast, going from Dubrovnik to Korcula to Hvar to Split. Everyone seemed to have a good time. It was also a bit poignant, as I realized that it might be the last time that all of us would be able to visit Europe as a family.

Last Thursday, I had another scan (number 56 for those keeping score). It was routine. Dr. Maughan got the quick readout and told me that there was no sign of any metastatic disease. This remission started in June 2020, with the elimination of my last persistent tumor through radiation. Dr. Maughan was pleased to mark my three-year anniversary of being disease-free. We discussed the big question: how durable was this remission. Dr. Maughan drew upon the studies of metastatic melanoma and renal carcinoma -- two cancers where nivolumab had been tested on patients prior to my first enrolling in the clinical trial in January 2015. He said that, for a small subset of each cohort (14% for melanoma, 7% for renal), patients had a complete and durable response. If those patients made it to 24 months without a relapse, then the likelihood of relapse dramatically decreased. Put another way, the Kaplan-Meier curve of the cohort flattened after 24 months. Dr. Maughan was cautiously optimistic that, because I was disease-free after 36 months, the odds of my relapsing were very low. He proposed, and I agreed, that we wait six months for the next scan, and stay on that schedule for two years. If I make it to five years without a relapse, then we'll discuss extending the period between scans to a year. 

This is a dramatic shift from the past eleven years. Wen I was first diagnosed with metastatic disease in April/May 2012, my odds of dying within 2 years was 80%, and 95% odds that I'd die within 5 years. Of course, that data was accumulated before immunotherapy revolutionized cancer therapy. Plus I have had the very good fortune to have received a complete response. I had one post-immunotherapy relapse in early 2018, and it took another two years and four months before I was once more NED (no evidence of disease). 

In the past few months, as this emerging promise of a durable remission became more clear, I have shifted my life view from waiting for death to looking forward to life. I have been given a new lease on life, and I am still adjusting my mindset on how to live it. Stay turned for future developments.

This is not to say that everything is peachy-keen. Two of my three scans had some troubling non-cancer findings: my neck scan confirmed that my left vocal cord was still paralyzed, and I had "moderate left spinal canal and neural foraminal narrowing at C3-C4. And my chest scan noted a hiatal hernia, and my lungs showed "moderate multiregional mosaic attenuation pattern in the lungs, suggesting a small airways or small vessel disease."

 

I emailed Dr. Maughan and Dr. Slade (my daughter) about those findings. Dr. Maughan said that he was focused on looking for metastatic disease and apologized for not discussing the non-mets findings. He explained that I had increasing arthritis in my neck, that I might be having some acid reflux from the tiny hiatal hernia, and the lung inflammation could either be secondary to that, or more likely the residue of a cold. I could follow up with a GI doc or pulmonologist if the problems persisted. Chelsea was more definitive: I'm getting old and had a cold. Don't sweat it.

Scan 55: NED for me, but breast cancer for my dog

Last Thursday, March 2nd, I had another set of CT scans. For some reason, readings by the radiologists were not completed until today. Dr. Maughan had looked at the images and told me he didn't see anything that concerned him, so I wasn't too worried. But I waited on posting an update until all three readings were posted. Last Friday the abdomen/pelvis scan confirmed no new mets. On Saturday, the neck scan was likewise negative for mets, while observing that my left vocal cord was still frozen (and noting that my nose had been broken at some point in the past 60 years). This evening (Tuesday March 7) the chest reading was posted with the observation:

Similar 0.8 x 1.2 cm subcutaneous soft tissue nodule along the right upper anterior chest wall (series 4, image 16) with central hypoattenuation. This may be postprocedural represent a lymph node. No axillary lymphadenopathy....No thoracic metastases identified.

I'm pretty sure that's referring to the persistent tumor that was irradiated in 2020, but I've emailed Dr. Maughan to confirm. The big takeaway, however, is that none of the scans found any new evidence of disease.

By contrast, my six year old goldendoodle, Cocoa, had a cancerous tumor the size of a golf ball removed from her mammary. She's doing ok recovering from surgery. The doctor thought he got clear margins, so we'll be doing watchful waiting. 

I've been continuing to deal with the consequences of my frozen vocal cord, which was caused by my radiation therapy in 2020. Skiing in deep powder leaves me sucking for air. Last Monday Spencer and I were skiing the Olympic downhill at Snowbasin with 12+ inches of fresh powder, and I simply could not breathe. I stopped halfway down, wheezing, and after I finally caught my breath I blew my nose and was stunned to see bright red mucus from both nostrils. I just can't exchange sufficient oxygen at altitude when making powder jump turns. Three days later I returned and skied the now-groomed downhills with no problems.I'm wondering if I'm going to need a type 1 thyroplasty and arytenoid adduction. I'll closely evaluate the pros and cons before I make a decision. 

My motorcycle group has been planning a trip to southern California this weekend. They are planning on trailering their bikes to St. George and ride from there; however, my trailer is buried under 3 feet of snow at the back of my property. I'd need a helicopter to get that out. So instead, I'm going to Sun Valley and continue to celebrate this awesome snow year.