Day +2

It is amazing what difference a little sleep makes!

Last night I probably got close to eight hours of sleep. I had a little trouble falling asleep as I had a nagging headache that was distracting. I finally asked if I could take Tylenol (which I seldom do), but apparently with little exception you're not allowed Tylenol for the 100 days post-transplant. Right now it's because my liver is already so overworked with processing the myeloablative chemo and other drugs that we don't want to add more. But as I make it through the hardest immunocompromised 100 days, it's important to know as soon as possible if I have any symptoms of infection and Tylenol could mask those symptoms. So I can use cold or heat, or gentle massage, and I can use aromatherapy. I grabbed a roller of "Serenity," rubbed the base of my neck, and I was able to sleep. When I woke up, the headache was gone, so that's something. :)

My counts are still dropping, as expected, so even after a bunch of sleep, I was still kind of tired today. My magnesium and potassium levels were within range so I didn't need any IV supplementation of those.

I questioned some more on the "longer recovery time" tied to bone marrow vs. peripheral transplant and was told that everyone is different, but I should expect counts to begin to rise sometime between 14-21 days. At that point, I would still need all else to be good plus the counts to continue rising for two or more days before considering discharge.

I talked to Dr. Shaw about my headache, the itchy ears, and my burning hands. She said that if the essential oils and massage didn't work for my headache, I could try ativan to relax, a low dose of pain killer like Oxy, or at this stage a Tylenol if I was unable to rest otherwise. She thinks that the itchy ears are the beginnings of mucositis, which is actually impacting my eustachian tubes, but I'm feeling it in my ears. And she said that it could definitely be the IV tacro that is causing the increased neuropathy in my hands. She didn't want to switch me to oral tacro yet because if/when the mucositis hits, it'll probably be very difficult to swallow oral meds and since tacro levels have to be closely monitored, switching back and forth between IV and oral meds run the risk of messing up the dosage, which would be worse. She did reassure me that this is not a permanent effect and when I do switch to the oral tacro, it should go away. I can put up with it as a temporary annoyance, but it's really strange how sensitive my fingers and toes now are to temperature. I scratched my stomach and the heat from my body core made my hands feel like they were on fire!

Today was a every-4-days IV cap change, so that meant I was allowed some time un-tethered to the IV pole and wearing my own clothing between my morning and evening tacro infusions. I was amazed at how good it felt to just walk and not deal with the other things. I did 30 laps today, bringing my total to 185 (210 needed for the marrow-thon).

My own clothes!

I also spent some time with the PT in the gym, working on strength. It was nice to go somewhere "different"!

I still have a good appetite and food is tasting good. I was looking back through notes I'd taken and I had written down that the mucositis and nausea "might appear around days +3 or +4" and that's tomorrow. I have to remember that if and when they come, they, too, are temporary. Before I know it, I'll be home and all this hospital stay stuff will only be a memory. I like to be prepared for the future, but sometimes I think the sense of dread can be worse than the actual thing. :)