Thursday, December 3, 2020

Enjoy Every Sandwich

Ten years ago, I was feeling on top of the world. I was 49 and thinking about a momentous 50th birthday celebration. My long time foot issue was finally healed. I had a job I liked. Leslie and I were happily living together. Gracie was already proving to the best companion I could ever hope for. But I imagine I was also starting to feel some fatigue and energy loss. I had given up eating meat and I initially chalked up the fatigue to not getting enough protein. It was hard to imagine that just a few months later, I'd be hospitalized because I was severely anemic and shortly thereafter diagnosed with multiple myeloma. 

Fifteen years ago, Hurricane was still around. Gracie hadn't entered the picture. Hurricane (nee Champagne) was the opposite of Gracie. Yes, loving. Yes, she was my baby. But Hurricane was a lady. Very dainty, very mellow, very sweet. Gracie was a lovable oaf. Klutzy. No respect for personal space. Fifteen years ago, I was also doing pretty well. In late 2004, my stepfather, Ed, passed away. It was really my first experience as an adult with someone very close to me dying. I knew I was supposed to be sad, but I wasn't sure how that sadness was supposed to manifest itself. 

When I was diagnosed and rather sick, I had a lot of dreams with Ed in them. The specifics varied but generally, I'd dream that I was trying to get somewhere and Ed kept getting in my way, throwing up obstacles.  The dreams were vivid, and I took them as a sign that it wasn't my time to go yet. 

Lately, I've had dreams with Hurricane in them. And in my waking hours, I often think I see Gracie roaming the house and yard. I swear she almost tripped me the other day. She loved to be underfoot. 

I've done a lot of dumb things in my life and made some mistakes. But generally things have worked out for me. I'd have to scratch and claw a little bit, but I'd also often have an easier path than perhaps I'd earned. And I'm not so sure that has been a good thing.  I'm not sure I always considered others. Suffice it to say, I was decent at thinking about me and shirking responsibility. 

Also, suffice it to say, I waited for things to happen. Despite having a degree in planning, I really wasn't great at planning. In fact I was horrible as planning (my life that is) I'd go with the flow. I'd follow my gut. I'd act (out) on emotion. I mean that's what Malcolm Gladwell said to do. Right?

Now as I inch up on ten years with myeloma and rush to 60 years old, I'm finally putting some thought to future plans. What lessons can I glean from Gracie, Hurricane, Ed, and others people and animals who have influenced me.

I passed four years on darzalex in November. It continues to easily be the best drug I've been on. Thank you darzalex! A few months back, I did a lot of tests for a rheumatologist. I was constantly achy, sore, tired and low energy. All the tests showed nothing other than a 59 year old body that had been beat up by steroids and toxic drugs. But we also identified depression as contributing to my overall feeling of fatigue. We switched up my anti depressant medicine and it's made a world of difference. My attitude has definitely been upgraded. It's also made me see that depression wasn't something that cancer brought about. Clearly for decades, I'd experienced mood swings and roller coaster of emotions that played a role in my actions. 

Nonetheless, I'm doing good, feeling optimistic and trying to plan out what my next year or years or decades look like. I've been seriously addicted to westerns lately, and I imagine what it would be like to be a modern drifter with a horse, a dog and a fiddle. The late 19th century must have been wild. There was still the wild west, while at the same time, cities were industrializing and building bigger and higher. I also wonder when and how the switch from whale oil to petroleum took place. What a game changer. Neither option has been the best for the planet. It's no secret that Carl Safina is my idol and his writing has influenced me hugely. His description of sperm whales and their intelligence and family structure is eye opening. His writing motivated me to read Moby Dick; finally. It's a slow read, but a great read. 

I'm waiting on my most recent lab results. I'm certain they will be fine. And I'm certain that next week I'll do my monthly darzalex infusion. Cruise control as Dr Phan says. With the pandemic, traffic around here has been minimal. My 30 mile drive to Berenson's office takes only 30 minutes now. Pre-pandemic, it would take up to 2 hours regularly. Because of the short drive, I'm pondering doing my infusion at Berenson's office. It's a bit calmer, more spacious and quieter at Berenson's office. And if myeloma and the pandemic have taught me anything, it's that I like alone and quiet time. We'll see how this pondering turns out.



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Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.