Monday, September 30, 2019
Tomorrow is October 1. It's my birthday month. 58. JFC, that feels old. Yesterday I was watching the Vikings sloppily lose to the Bears with a couple of friends. They are in their 40s and asked me how it was when I turned 50. Well, funny they should ask. I was super excited for my 50th. I was planning a big blow out event. I felt healthy, fit, and life was not bad. Then...five short months before my 50th, I was diagnosed with myeloma, after feeling like crap for the previous three months. How quickly things change. With that diagnosis, I suddenly wasn't so sure I'd make it to 50. It was touch and go, for sure. Now, in less than two weeks, I'll be 58 and I'm still here, still kicking ass and wondering what my blow out celebration will be for my 60th.
2019 has been a bit of a challenge. I've had 3 MRIs, numerous x-rays and recently my first ever PET/CT scan since January. Fortunately, my back, neck, elbow and foot issues aren't directly related to myeloma. The disease is still stable and under control. But the 8 plus years of treatment, oodles of steroids and my approaching 60 mean my body is challenged and I have to work harder and smarter than ever before to stay fit. My back has been the most challenging and has been an issue for two months now. It has truly messed with my mind. With rest and physical therapy and time, It's finally improving and I can start working on my fitness again. But wow, I'm basically starting from scratch and that's humbling and frustrating. I've also had to readjustment my expectations. Sadly I had to give up my volunteer efforts feeding seals and sea lions. It was physical work and it's quite possible that is what pushed my back over the edge. But I loved it and it was such a welcome change to do something "normal" and not cancer related. I also don't think I'll be running any ultra marathons in the future. Of course, I didn't do this before.
A few years back I started to get rid of stuff. I was giving things away or selling them or simply tossing them. Truthfully I couldn't imagine lasting this long with myeloma. But here I am and every so often I kick myself, asking what the heck did I do that for. I recently was talking to someone who has had myeloma for over 20 years and he started talking about how he had got rid of a coin collection many years ago, given he wasn't expecting to be around very long. Mind you, 20 years ago, there weren't a lot of options for treating the disease. I told him that while I felt bad about his collection, it did make me feel a bit better that I wasn't alone in regretting shedding certain things. Recall a while back I mentioned the Swedish Art of Death Cleaning. It makes great sense, but perhaps we need to put a bit more thought into the effort. Or we make sure we don't just unload all willy nilly.
Yesterday I was struck how amazing it is that I am still around. This year with all the tests, aches, pains and anxiety has left me a bit down. Like damn, so this is my life now. Well, I had a talk with myself. Yes life is different, but let's not forget I'm almost 58 and let's not forget that overall I'm still doing well and enjoying life. My back had me wallowing a bit but I'm snapping out of it and now I'm working on thriving.
And birthday plans? On the actual day I'll be in Dallas for a blood cancer committee meeting. When I return, I'd like to go to a local animal rescue place and I want to see the Joker movie and I'd kind of sort of like to go to Disneyland and maybe go miniature golfing. Plus, I got to get back on my bike, eat some cake, and spend time with Leslie and Gracie. The future is limitless (with some limits).
2.47 latest creatinine 3 years on darzalex/pom 8.5 years since diagnosis 3 hours drive time to Berenson's office 60 total miles roun...