I have combined these days to catch up.
Tuesday was largely uneventful with the exception that it was ‘22022022’. It took Fernie pointing that out for me to rise out of my dazed state to recognize the symbolism. Cool.
I had a bit of a break in the intensity of all my symptoms and hoped things would stay that way. I stretched, read a tiny bit outside (it was cut short due to the unusual heat wave here), rested and watched some shows.
My standard meds for both Tuesday and Wednesday (see Feb. 21st list) were the same with the exception of extra pain medication for following…..
Early Wednesday morning, I woke up with a crushing headache. It felt like a medieval torture tool, a steel cap, had been placed on my head, tightening around it, a sick steel drill gnawing into the base of my skull, being spun to ever increase the pressure and pain. Generally speaking, I can cope with head pain better than my other symptoms, but this was too much. I had it pre-apheresis, but perhaps not as strong. I agreed to take Tramacet (Tramadol as the active ingredient) as Acetaminophen and all my other meds weren’t remotely touching the pain.
Pushing me further to my max, the unbearable bladder urgency and pain was screaming violently at me with zero relief from the Nalixone and Amitryptline. Fernie pointed out the same thing erupted from the last cycle of when I had my first infusion of Cyclophosphamide (post 7 days) and now again, like clockwork, 7 days post-Cyclophosphamide (3rd and 4th dose). OK, good to know, my body is like a clock 😉 I never stopped taking Amitryptline since then, only decreased it when the pain decreased. Hemorrhagic cystitis and bladder irritation are side effects from that drug, so obviously keeping up with lots of water, etc., has been key.
In the middle of all this, my usual visit from Dr. Alex (for my Filgrastim shot) and Dr. Andrés arrived to give me the results of my morning blood prick. My counts are down a bit further (see below). BUT I was pretty proud my body was still holding strong on the RBC level.
WBC: 0.1 (4.5-11)
RBC: 2.81 (4-4.9)
Platelets: 31 (150-450)
We talked about a short term plan on next steps, and the potential of when my counts would increase enough to have my final treatment, Rituxamab (basically an earlier, non-Gucci version of Ocrelizumab). The earliest would be Saturday or Monday (Oncare is closed Sundays).
I know I’ll recovery by my departure next week; it just seems like I have a lot to get through by then. Can’t think that far, and I am OK with being patient.
The tramacet helped a bit. I guess with too many symptoms piled on top of each other, I am cracking emotionally. I was in tears by the evening, wishing I had my little Lambie, the stuffy I’ve had since my childhood to snuggle with. I realize I am a grown (usually tough, OK maybe, pretend-tough) woman, and that Lambie has travelled with me wherever I live.
My mom will smile as she recalls how many times she re-stuffed that thing and re-stitched it’s eyes back on after I would tear them off. Why did I do that, I loved him?! Oh, to be that kid again, ignorant to the horrors in my future with this disease.
I dreamed for some sloppy licks from my dear Skipper who died nearly three years ago. I even carry a tuft of his hair with me whenever I go too in case I can catch a waft of him in that tuft.
This treatment will end and I will get better. This I know. It’s just very hard living through it.