Midterm Progress Report

Walking FREESTYLE—still a bit wonky and still tiring quickly but look: No ski poles!

SHORT VERSION: Things are going well.

LONGER VERSION: 

• Rituximab: I will have my first infusion tomorrow at the Sandoval County Regional Hospital. Infusion #2 will be two weeks later. And these two infusions apparently will last me for at least six months. 
• Methotrexate: Started July 29. Almost one month in and no mouth sores or (not much) hair falling out! Calling it a win thus far!
• Prednisone: Have begun tapering down. Currently at 50 mg. Dropping 10 mg per week and headed toward a plateau of 20 mg by the week of September 11. Side effects still not bad. Really grateful that facial hair hasn’t become an issue—even though admittedly COVID-era masks would make this less objectionable.
• Testing for Bad Stuff: Echocardiogram and EKG were normal—thus completing the last tests on the list.  In terms of results, still awaiting the one final holdout: pathology reports from the “random biopsies” taken from my esophagus. (But other than that, glory hallelujah: all clear!)
• Bloodwork:  Serum CK level was 341 on August 6. (Average CK level in a healthy body is around 200. Mine was at 6,800 in May. SO, yeah, this is still high but also LOOK HOW LOW IT IS!)
• Physical Therapy: Doing my exercises, Boss. I promise to post about them for anyone else needing to rebuild from scratch. 
• Therapeutic Yoga: I wondered early on whether it might be insane to do this but am so glad I followed my impulse and signed up: I completed 50 hours of credit in therapeutic yoga teacher training. Very, very helpful. Will post some sequences. 
• Walking: I ditched the ski poles! I still lurch like a pregnant lady but am getting better. Signed up for a virtual race around Lake Waccamaw, NC (where I was born and where my folks live) and am using it as a gentle nudge to keep moving. 
• Weakness: Just realized today I’m able to open the cap on the contact solution! Can plug things into electrical outlets! Can lift my foot to the opposite thigh in Tree pose in yoga! (grabbing my ankle, I mean. But even that was not happening two weeks ago.) Also, I’m learning that as I get stronger, I’m needing more sleep. And if I push too hard one day, I'll get grouchy and tired and won't be able to focus the next day. Trying to figure out how to find that balance. 
• Sleep: Still a challenge, but melatonin (and—ahem—Tylenol PM on occasion. Trying not to use it, but some days we go with whatever works) is helping. 
• Diet: Continuing with the anti-inflammatory eating. And actually liking it. Ask my for my signature kale “Caprese” salad recipe sometime.