I've been in the hospital for two long weeks, and I can't wait to feel some sunshine on my face, hug my doggies all up, and sleep through the night without people waking me up to feed me pills or stick needles in my arms every few hours. It's such a simple thing in reality, but some part of me feels like there should be a grand parade to coincide with my exit.
I had a new MRI of my brain today, and it's still showing numerous lesions. But we are waiting on the comparison report between this MRI and the last one. The doctors hope the lesions will appear to be less, showing that the treatment is working.
I also got a piccline IV installed in my arm/shoulder/chest this morning. [NOTE: I do not recommend googling that process if you are about to eat, are eating, have just eaten, or plan to eat within the next 48 hours.]
As of now, the plan is that I will visit the hospital as a "short stay" patient every single day for the next four weeks, to get my daily blood draw (which will now come out of the piccline) and take my IV infusions for 7 or so hours at a time.
I'll also continue taking pills of the secondary drug every 6 hours, as well as the additional treatments that are keeping my kidneys going, my magnesium levels up, and preventing me from having full-scale panic and/or puking attacks during the IV treatments. Fun, fun, fun!
My headaches are still pretty intense, and I like to think it's because there's a war going on inside my brain between the infection and the drugs. So, I'm not complaining.
I've been learning a lot more about this disease, like just how rare it is. There are so few documented cases around the world of immunocompetent people (such as myself) having this thing infiltrate their brain, that the medical literature is pretty scarce on treatment success, long-term prognosis, and all that jazz.
Something I learned last night that really threw me for a loop is that, before the advent of these two main drugs I'm on, my diagnosis would have been a guaranteed death sentence. So the drastically lowered mortality rates since about 1995 make me despise these IV bags a whole lot less.
As the medical staff was prepping my body for that creepy piccline procedure this morning, I started to get a little nervous. Then the old hymn I probably learned in Sunday school, Peace Like A River came abruptly to mind. I sung it quietly inside my head over and over to distract myself as the doctor and her two assistants worked away at me. By the time I got to the third round of "I've got joy like a fountain," I actually had a little smile on my face.
Right now as I lay on this hospital bed, taking my 4 hour bag of IV fluids before they start the Amphotericin, I'm not worrying about the next step of my treatment, or what the next tests will show, or mortality rates, or chance of recurrence.
Nope. I've got a grin on my face, thinking about heading home in the morning, and "I've got peace like a river in my soul."
Love,
-Molly