Its Like I'm Still In The Hospital

Just have to remind myself :/

Its day 20 after my Stem Cell Transplant. I still feel like blah. Now I understand what they meant when they told me I wouldn't feel like myself for a few months. I hope this feeling is short lived. I can't do anything. Bending down or turning around nauseates me more or gets me dizzy. I'm almost always nauseated to some extent, just more or less at times. I am weak always, tired usually. I feel like a quarter of myself. It sucks. Its very manageable, but waking up everyday like this is just crushing. It starts to get to you. I almost wanted to whine and cry to myself a moment ago. I'm alone at the moment, my husband went to run some errands. I don't want to cry to him or anyone, I just thought crying would feel better than this, it would be a change at least. I'm just so sick of feeling this way and I've only been out of the hospital a week. Being left to my own mind is the worst thing for me, I notice I "seem" to feel better when I have company because talking distracts me. Watching tv/movies (especially happy/uplifting ones) does the same thing.

On a positive note I have to remember: I don't have to worry about my catheter on my chest when I sleep (they took it out), I don't have to cover it b4 I shower every time, no more sticky paper ripping my skin, I'm not throwing up, having fevers, or worst of all chills. No crazy headaches either. I'm back to my own bed, shower, & warm room. Oh yeah and no horrible throat/chest pain and dry mouth/thick spit problems. When my throat/chest was dry and probably full of holes that might have been the worst thing. I had to resort to drinking for nutrition and even that didn't feel very good going down. I had to take oxycodone to stop the pain, it felt like my ensures would not go down, like they would stay in my esophagus and put pressure in my chest. I couldn't sleep unless I took pain a med and ativan. I still take ativan now when the nausea gets real bad. I hear that people in my same situation often have it worse, they are still throwing up now and they have to get even stronger painkillers for the throat pain.

I have a tough exterior.
I'm not always okay...

I am just venting today, not feeling well still. Oh yeah and I guess I gotta remember NO MORE BEEPING or ghost bed. Glad I don't have to hear my machine beep (that was SO effing annoying) and I hated my hospital bed because it moved. It was like an air mattress in which certain parts would inflate at random times to keep your blood flowing/body moving if ur an old lady. All in all I couldn't have asked for a better hospital experience, but who wants to be in a hospital!? Glad I'm home, just... gaaaahdammit can this weakness end already!? ::sigh::

Home & Expectations

It was really hard to update in the hospital. Its BEEN hard to update. That willpower man. Even I couldn't bring myself to the computer many days. My Christmas was uneventful, I was feverish for days until I received steroids. I want to say 'I LOVE THOSE STEROIDS!', having been on prednisone in the past & this time some new steroid that made me feel better... BUT... it had its downfalls. This steroid, I forgot what it was called, made me very anxious, jittery to the point that I could not sleep unless I took Ativan before bed. The Ativan only lasted 3 hrs or so resulting in me tossing & turning in the middle of the night trying to go back to sleep on my own but failing & having to ask for more Ativan. It also made me feel like I was an emotional wreck. I was irritated easily, crying the next second, or freaking out. I only had to stay on it for 3 days. My New Years was also kind of uneventful in that I was overly exhausted and really only spent it with my husband and a little bottle of sparkling apple cider. I forced myself to stay up for the ball drop and then proceeded to sleep shortly after ignoring most calls and txt messages. I'm sorry about that, but through my worst days I ignored a lot of messages because I just wanted to sleep my miserable insides away.

I finally came home and I honestly didn't feel as great as I had hoped. That's what I get for having high hopes. Its just that, I'm still pretty weak. Although honestly I could be much worse, doctors say I was "ahead of the curve". I just don't like feeling so unlike myself. I nap a lot, I feel crappy a lot, and I just wait for this weakness to run its course. I can't do much about it but EAT and HYDRATE myself. I lack energy to walk much, let alone do much exercising right now. My counts are still on the low end, so until my body recuperates I'm going to be a sluggish mess. I'm not allowed to exercise hard but I can't exercise much anyway since there isn't any fuel in this tank right now. I plan to start a light exercise plan in the next week or so. I'm allowing myself to rest up for now...FOR NOW. I can't wait until I start feeling better and I can push my body again. Its going to be disgusting how I'll make my body change this year.

Now I know I said I would workout while I was in the hospital and YOU KNOW WHAT? I did my best. My first week in I exercised everyday practically, walking miles in the hallway and then some. During the middle of my stay (the peak worst) I slept the days away and honestly I can say I don't remember too much of it. The days felt long and torturous at the time, but now I just can't remember where the time went. Towards my last week I began to use my exercise bike more and walk around the room here and there. I wasn't allowed out of my room. I think I did great though. Try getting high dose chemo and doing anything at all! When I came home the first night I broke down and cried before bed because I was overwhelmed with so many emotions. I was free, in the bed I longed for, I still felt horrible, but I was still so grateful, and happy to lay next to my loving superhero husband. He never ONCE failed me, sure he aggravated me when he pushed me to do things on my own, to eat, to move, to drink, but he was my coach, he did everything right, with the right words, attitude, everything. Most of all I was overwhelmed in tears realizing I couldn't remember the worst of it. I think my brain put a protective block in my head because I try to recall the memories of me that second week and all I mostly remember are my visitors and the clock on my wall. I would stare at that thing waiting for the days to end for a new one to start and it felt like forever. 3 weeks later, here I am and why does it seem like it went by so fast now? I don't know. I'm glad the worst is over. I'm learning the tricks of what helps me feel better temporarily at least: food = energy, liquids = hydration, Ativan = when the nausea kicks in & food looks/smells too disgusting to eat. 

I will try to keep the positive attitude up though, just going through a minor rough patch expecting too much too soon. Like my stay in MSK, this too shall pass... quickly... Just need to be patient.