Tuesday, August 14, 2018
Words or Lack Thereof
Not really a whole lot to report. Last Friday was my monthly darzalex infusion. I also take 1 mg of pomalyst for 21 days with 7 days off. We're approaching two years on this regimen and it continues to work pretty darn well, No light chains, low m spike, kidney function tremendous. We've got my dex dosage down to 12 mg that I get with my infusion. My crashes aren't as bad as they used to be when I got a higher dose, but they still happen. Sunday and Monday I'm moody, irritable, and slightly depressed. Today is Tuesday and I'm all done with that nonsense. Berenson has me also taking an oral steroid, medrol, at a low dose, every other day and it's pretty innocuous.
Leslie was out of town for a few days, so I had the house to myself. Gracie napped in random cool spots in the house and I binged on 23 hours of Handmaids Tale. I read the book last month and had to see the show. It's powerful and a little frightening. I got home from the doctor after treatment on Friday and hardly left the house until picking Leslie up at the airport. I had food delivered, roamed the house and hardly spoke a word for those few days. Fairly soothing. Oh and let's not forget I did watch the Vikings first preseason game of the year. They looked pretty darn good, although preseason isn't always a realistic gauge. I can guarantee by week 1 of the regular season I'll be in full on this is the Super Bowl season mode.
Health wise I'm good. Staying fit. Warts are under control. We did x rays on my aching neck and there is really nothing new there. Osteoporosis, some degenerative disc issues. Nothing horrible and I think I've got a handle on it. I still need to add yoga to the mix. There is a beginners class tomorrow night that I'll try and make it to. Been walking a whole lot, so of course my foot aches. I have a follow up with the foot doctor later this week. Some inserts might be all I need. I'll be 57 in a couple of short months. I can't believe it, although I've said before that this here myeloma has fast forwarded my internal clock. Old age isn't far away.
I've come to grips with the unknown and now am just focusing on living my best life. Cliche, but true. Next month I'll be taking an on-line course through the University of Minnesota, which, if you know me, will help fulfill a lifelong obsession/love affair with the State of Minnesota. Started with the Vikings and blew up from there. On my laundry list of oops, you can include not applying to the university when I was looking at schools coming out of high school. I've got my class choice narrowed down to a history of landscape architecture or a course on renewable energy. They both sound interesting, but I'm not sure which I'll take. Taking both isn't an option.
I've got a new therapist which is fantastic. She is definitely helping me with guilt, regrets, identifying who I am, not being bitter and embracing life. Like I've said before, not working has given me a bit too much time to think and I'm feeling like I need to get back to Matt. What is Matt? Hell if I know.
Going to Lake Tahoe in a few days. I'll see my nephew, do some hiking, gamble a little bit and have a cocktail or two by the pool. Next month it's off to Colorado to see my mom and brother.
I'm still volunteering for the Leukemia and Lymphoma Society on their First Connection program which connects newly diagnosed blood cancer patients to someone who has experience with the same cancer. It's an awesome program. I've cruised past 7 years since being diagnosed and just recently experienced survivor's guilt. What the hell? Let's add to that the mix. I've heard about it. And now it has hit me. The therapist will hear about this tomorrow. Chemobrain is in full force. My ability to focus and recall names or things is hugely impacted. It was funny at first, but now it's pretty annoying.
Wrapping up Trevor Noah's excellent Born a Crime and moving on to Spying on Whales by Nick Pyenson, which I'm super excited to dive into.
And that's my update.
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...