It’s been over three weeks since I heard from the case manager in Pittsburgh. She said she had hoped to have some answers for me that following week, but nothing yet. I emailed her a few days ago and asked her if she thought I should try to find a plan B if this Pittsburgh-bound plan wasn’t going to work. I really don’t think I can afford to wait until this COVID-19 thing is over before addressing this. And who knows when that will be? I know they are dealing with their own crises, just like everyone else is. I totally get that—but I need to look out for me.
Amazingly, the oncologist whom Rose works with is on my insurance plan. To my delight and every ounce of appreciation I have, she is willing to treat me, provided we can get the drug protocol AND the approval from my insurance. (But as I’ve said before, I’m ready for a fight, so I absolutely will fight them on that if needed.) I’d prefer to go to PA because they’ve done the research, and they’ve worked with patients with this disease before. But the oncology drug Rituxan is familiar to Rose and Dr. R. The administration of it won’t be anything particularly new to them.
If that’s the route I have to take, I’ll fly to the Bay Area and stay there for a minimum of three weeks. The treatment is an infusion of Rituxan, then a week off, then another infusion. And somewhere in there, I start a fairly long regimen of prednisone. (God, I HATE prednisone. Ugh. It’s an amazing drug with a million applications–but a solid shit ton of side effects, most of which are awful. But as much as I hate it, I’m about 100% sure I’d hate dialysis even more.) And, just like here, I’d hunker down there (thank you Airbnb). Hopefully that spectacular Laotian restaurant is open for take-out.
I’m hoping that my asking the case manager about going elsewhere will spur some action on their part. Again, no fingers pointed. I know I’m not their priority. But I am MY priority. I think I’ll give them a week, and if I don’t hear anything, I’ll move forward with heading west.
I don’t know how quickly this progresses so I have to do something. I can’t just keep waiting.
Low, Low, Low 