It’s been an interesting week. I’ve had better.
I plan to spend a few upcoming posts to help unravel the mystery of why different patient’s transplant experiences can be so different. Heck, I experienced a different complication following each of mine; my own recoveries were distinctly different, too.
Of the three, my autologous stem cell transplant (SCT) this summer seems like it was easiest to bounce back from. Not that it was a picnic, mind you, but I can tell I’m not as physically strong this time around. That’s understandable; I wasn’t fully recovered from the first of my tandem SCTs in July when we hit the repeat button in October.
Day Zero for this fall’s SCT was October 22. So Sunday is Day 24. I’ve been home nine days.
There are always complications and side effects. Some last a day or two. Others–like a variety of fun GI tract injustices–can holdover for months.
My most unsettling side effect is mind bending. It’s hard to put into words; sort of like trying to describe what it’s like having chemo brain. For me, being so sick and out-of-sorts is emotionally taxing. This time around I remember sitting on the toilet late one afternoon (for the tenth time that day), alone in my hospital room and screaming out loud, “I just want to feel normal again!”
I would be watching TV–trying not to move so I wouldn’t need to drag my double, loaded up IV pole into the bathroom yet again–and wonder what it would be like to be moving around unfettered; to worry about being late for a picnic or what to say to a disgruntled teenager.
This may be why I’m not a marijuana fan. It’s not that it doesn’t work, it’s that it works too well. If I’m high, I’m not myself. Must be a control thing.
Even during the easiest of recoveries, every patient experiences three, four, five days or more that are pretty dark. No energy, diarrhea, nausea. This fall I developed a bacterial infection in my gut that was preventing anything I ate or drank from exiting my stomach. Very uncomfortable and painful. I was so drugged up–between anti nausea meds, painkillers, oral and IV antibiotics–that I began to lose control of my body. It got so bad that a startled tech dropped me as I tried to swing over from my bed to a wheelchair on the way to a stomach CT scan.
By the time I flew home with Pattie, I was feeling a lot more like myself. But this was a rough week. I backslid for days. My diarrhea was relentless. I was weak and uncomfortable. You can guess the most disconcerting part were the unpredictable ups and downs. I wasn’t having good days or bad. I was having bad mornings or discouraging late afternoons.
Thursday is a perfect example. I needed to get up for an hour at 3 am, waiting for my anti diarrhea meds to kick in. By the time Pattie got up to head into work, my nausea was the worst it had been since I’d been home. I know she didn’t want to leave me curled up on the couch, moaning, covered by blankets.
I hadn’t been taking anti nausea meds at home. I had been battling what I call a “sour stomach.” More like indigestion than nausea. But antacids weren’t helping. Out of desperation I tried dissolving an olanzapine tab under my tongue. A lot like Ativan, olanzapine is an anti psychotic that happens to help some (like me) to lock down tough to treat nausea.
It worked like a charm! It also knocked me out for three hours. Funny, I don’t remember it making me so sleepy. Then again, who knows what made me feel one way or the other; I’ve been on so much stuff.
By mid day I was up and feeling pretty darn good! That lasted long enough for me to make it in to see my local oncologist and swing by the hospital to get long overdue blood work. Then I crashed again, passing out on the toilet later that evening.
My sour stomach was back. This time I tried a home remedy: unsalted pretzels and Honey Nut Cheerios. Having some simple carbs in my belly helped sop up the acid and was just what the doctor ordered. Strange; within a 24 hour period it took a dangerous off label prescription and later something as simple as pretzels to allow me to rest comfortably.
Friday and Saturday I was doing a lot better. But I’m not getting cocky. As so many of you have advised me to do, I need to be more patient. If there’s one thing I’ve learned: having a bad night or morning doesn’t mean its going to be a bad day.
I can’t give advice about when to take a deep breath and practice patience; how not to panic and how best to ride out a storm. But I’m learning.
It can be unsettling. On hour I’m out of sorts or seemingly out of my mind. Yet a few hours later I’m up and energetic. Back to that control thing. Hard to plan on what I can do and when.
Like writing this post. Saturday morning I felt–dare I say–great! We walked Finnegan on the beach, hung out around the house and watched college football. But when I sat down to write my post, I had trouble keeping my eyes open. No energy. My mind was scattered.
Now I’m wired. And my diarrhea? I haven’t taken an Imodium for ten hours. Dare I hit the sack without an assist from my two tone brown Imodium caps or the small, white Lomotil tabs?
Here’s hoping we all have a calm, existential Sunday.
Feel good and keep smiling! Pat