I was released from the hospital late night on May 16, after 44 of the longest days of my life. For some reason, the last administration of Amphotericin was particularly rough, and had to be stopped two or three times (can't be sure on the specifics because that night is now a bit of a blur).
I was given a pretty strong dose of Dilaudid to help address the intense headaches, nausea, and chest pain — that I would come to find out was a lung infection, likely picked up because the drugs had slowly obliterated my immune system.
For the record, fluid on the lungs feels like your torso is being strangled while someone sits gingerly on your chest. And when you're lucky enough to get a deep breath, you get knocked down by the "cooling sensation" of a Ben Gay-soaked ice cube lodged under your chest plate. (Good times, all in all.)
I had promised myself when the treatments were done, I would walk out of the hospital. I told my family from the beginning I would refuse a wheelchair for my grand exit. Unfortunately, my plans were foiled by the effects of the Dilaudid.
By the time we made it a mere 2.2 miles home from the hospital, I was shaking so badly my teeth chattered when I'd try to speak, and I had nausea so bad I had to sleep (when I could) with a puke bowl next to me. I recall all too vividly lying in bed with earbuds in, listening to songs my dad had recorded for my mom when she was in the hospital years ago, just trying to maintain my grip on reality and physical space.
One of my dogs repeatedly went to get my dad (seriously, Lassie style), and every time I awoke that night, I found Rocky half-sitting, half-laying right next to me with his eyes open, keeping watch.
The next four days were filled with doctor's appointments and self-directed attempts at detoxing my body from all the gallons upon gallons of poison that have been pumped inside. Unfortunately, I'm not known as the most patient person, and though I've been trying to heed everyone's advice on taking things slowly in my physical recovery, I learned the hard way yesterday I may be going too fast.
My skin was so dry by the time I left the hospital, it was shedding as if I'm some sort of reptile in moulting. I went yesterday to an organic spa and had a few layers of skin sloughed off, followed by a detoxifying mineral and mud wrap. The day prior, I had a massage, and the two days prior to that, chiropractic adjustments.
Needless to say, my weakened body has not handled my detox efforts well, and I spent most of yesterday feeling very ill and tired. I'm not sure there's been a day since I left the hospital (and I do need to be reminded this is only day 5) that I haven't had to take an anti-nausea pill, and yesterday was the kicker.
I came to the dinner table and almost passed out. Instead of eating the wonderful lean protein and veggies my mom had prepared for me, I had to sit very still in one place for over an hour, popping sub-lingual nausea pills, and nibbling on crackers. And then I went to bed. And didn't sleep.
I've had the hardest time sleeping ever since I got home. I know I need to rest so I don't collapse. But I lie in bed and can't seem to quiet my mind. There's an ever-pressing to-do list constantly bouncing around my brain because, while I had to put life on hold for two months, life didn't wait for me. And the idea of not knowing when I'll be strong enough to start playing catchup is frustrating at best.
There's really a lot that's stressful about this whole thing. For one, I am very into integrative medicine and holistic treatments. But I'm fighting a disease for which there are minimal to no options for that approach. I understand that western medicine is what's saving my life, but it simultaneously almost killed me.
I'll never forget lying on the brink of unconsciousness in my hospital bed, with my mother having to cut bits of fruit into tiny pieces to hand feed me some nourishment, while my nurses — who would normally drop up to 5 pills from their gloved hands in a cup for me to swallow at once — had to place them one-by-one directly into my mouth and help me swallow.
Between all the toxins to kill the infections, and drugs to fight the effects of the toxins, then other drugs to fight the effects of those drugs...let's just say my relationship with western medicine is a bit of a love/hate one at the moment.
Another thing I think about near constantly is all of the unanswered questions — most of which will go forever unanswered — about how this happened to me in the first place. I was able to pinpoint the date I became truly sick (July 29, 2011), but it's unclear if this was the initial instance or a reactivation of the disease. My guess would be the latter, based on what I've been told about the specifics of my brain lesions, but your guess is as good as mine (or any of the physicians') at this point.
My childhood pediatrician paid me a visit during my last week in the big house (I really started to feel like the hospital was my own personal prison), and was such a calming influence. She encouraged me to stop turning down meds just for the sake of not liking to put meds in my body until I'm left with no choice. "You don't get any gold stars for that," she said. She advised me to "stay ahead of the pain." She also told me that had I refused the Amphotericin treatment (like I tried to early on), "it would have been suicide."
When searching online for integrative medicine topics related to Cryptococcosis, I found the following: "If left untreated, cryptococcal meningitis results in death 100% of the time." I guess "Dr. Zen" (yes, I just nicknamed her that) was right. Not that I was unaware, but thinking about it sure puts life into pretty good perspective.
There's much more to share, as always, but I can't imagine who would care to read any farther than this in one sitting. (Right now I wouldn't be able to myself, without getting dizzy.)
I have three doctor's appointments this week — including a new Hematolgist (nickname forthcoming) — and lots of lab work, so I'm sure there are plenty of updates to come!
Much Love,
-Molly
PS - The photo above is my Power Picc, the double IV line that ran 16.5 inches from my upper arm into my heart for 4 1/2 weeks. I kept it as a souvenir, or...a Badge of Courage? (Yeah, I think I can at least give myself that.)