I’m typing this all from my phone so forgive the errors.
I’m not even sure where to start with all this.
Last week, I had two clinic days but otherwise worked from home. I actually did okay aside from being tired.
But shortly after that, things began really diminishing.
This week, I was supposed to be in clinic four days, to include an overnight trip. I had no idea how that was going to work. Fortunately for me, the clinic where I was supposed to do the overnight went on another two week lockdown due to a rise in COVID cases. Very sad for them, don’t get me wrong. But it was a help to me.
Over the weekend, I just got weaker and weaker, to the point where I literally could not get off the couch without the use of a cane or by sitting on a bunch of pillows. Keep in mind I’m carrying around about 40 pounds of fluid in my body right now, all in my stomach and legs. I can’t stand or walk for more than seconds at a time. I have difficulty breathing with any exertion, and getting off the couch counts as exertion. For reals. I won’t even bring up the toilet.
I cancelled my clinics for the next two weeks. This is unheard of for me, but if I can’t even freaking stand, I can’t work. And I sure as hell should not be driving.
I messaged my doc in PA about my symptoms but maybe I didn’t stress how bad they were. I don’t know. She prescribed stronger diuretics, but they didn’t help.
In the meantime, some maybe good news: the PA doc thinks it is still worth trying the second round of chemo. She said it *might* postpone my need for dialysis for a year or more. And of course it might not. But I’m willing to try.
The issue of course is where and how. I still fall into this no-man’s-land of diseases: I don’t have cancer but the disease is treated with chemo. I don’t technically have a hematology disease (other than anemia), but hematology (at least in PA) administers the drugs for my disease. I have a kidney disease but nephrology doesn’t typically work with chemo drugs. So…leave it to me to pick a disease that gets me stuck in the middle.
The doc asked if I would be willing and able to go to Pittsburgh once a month for six months if we no one here would treat me. Oh man. But yep. I’ll make it work somehow. Still would have to drive…or maybe the train? Details. I’d figure it out.
BUT…I messaged my hematologist* here and explained my situation, and lo and behold, he said he would be able to administer the meds here. There’s a catch, of course…he wants to follow HIS protocol that he uses to treat multiple myeloma. But of course I don’t *have* multiple myeloma. So I’m hopeful my nephrologist and the hematologist she works with will discuss the particulars with him. But at least this is a good start.
*I will likely owe this doctor an apology, at least in my mind, if not directly to him. This was the doc whom I felt was very dismissive of me when I questioned his lack of follow through. But as I wrote at the time, I’m on the defensive with these providers, probably unreasonably so. I had decided this even before I reached out to him about this chemo thing. Because…
A couple weeks ago at the hematology lab, I was talking with the nurse I see each week about this doctor, and she was really surprised at what I told her about my one encounter with him. She said he must have been having a bad day and that he’s a very good doctor. The nurses and the patients like him. I trust her insight. So since that conversation, I suspected I needed to probably soften my stance on him.
The PA doc also reached out twice to my nephrologist here about my going to the hospital to get an infusion of steroids so I could then get off the high dose oral steroids to lessen the fluid retention. But the local nephrologist never got back to her. Nice.
So then the PA doc talked with the hematologist, and he got it set up for next week, just like that. ‘Course all that might change now.
So back to the almost-present…the day before yesterday I really contemplated coming to the ER but the logistics of it were just so overwhelming. Packing some stuff, getting dressed, brushing my teeth… seriously, it was stressing me out that I would have to do all that. So I put it off.
Until today. I made a list of things to grab and what to do, and it took me probably a couple hours to get everything together. Put stuff in bag, lay down for 10 minutes. Brush teeth, lay down for 10 minutes…you get the gist.
Kyle brought me to Lovelace Downtown, my home away from home these days.
Okay, THIS was hilarious. He went in to ask for a wheelchair (in very short supply apparently), and at the exact moment the poor nurse was having to push my fat ass in that chair, a truck was backing up, with its loud beeps going off behind me. That was a thing of beauty. “Back it up, Bertha!”
So right now I’m in the ER. COVID test: negative. Kidney ultrasound completed but no report yet. EKG and chest x-ray done and both abnormal due to the fluid accumulation. Blood work done but no results yet. Lasix on board to make me pee. Haven’t yet seen the doctor other than in the triage room.
The charge nurse said it was good I came in. (I needed the reassurance, for some reason.) Even in the midst of a pandemic where this is really about the last place I want to be. But I need to be here.