Shane says I need to start this with a disclaimer.
Disclaimer. Chemo-brained-vision-impaired-caged-bird ahead.
Moving on...
Sorry for the unplanned radio silence. I thought I would have more opportunity to write, and actually I was right. I did. But I didn't count on feeling so un-moti-va-ted. Or lazy, to be blunt. I can take it.
We've been in Chicago a week now.Maybe it's jet-lag still. Or maybe all the lying around begets more lying around. (Should that b laying around?) I don't know and once again I'm just going to let it lie there because energy.
It has actually been a pretty full week. For not doing anything except watch the cranes work out our window. And sometimes we get hungry and Shane runs out for provisions. Then we hunker down until the next water/food run. And here we are.
Shane is working right now. so I thought I could look busy too. I think I might need some headphones and a list of funny sounding acronyms to throw out every few sentences. in addition to that like they've taken the english language and decided to give all the words new meanings. I understand the words I hear, but it makes no sense to me. I f I ask Shane he'll try to explain in words I understand, but I don't want to bother him. Plus we have an appointment tomorrow so not much time. I am content watching the cranes move enormous loads up and down (Malachi would so love the view). When I get worn out from watching all the work, I can go take a nap. Then we have lunch. Then back to work. At some point Shane will call "Hey! They're bringing down stuff for the day. If you hurry you can see them land the port-o-potties!"
Yes. It is very exciting here. Actually, it is.
I started the mobilization phase of HSCT last Tuesday, I think. An overnight stay in the hospital with a bag of IV chemo (cyclophosphamide) and whatever else they felt I should have. My favorite was the Lasix(sp?) I think it was called. I just new 3 seconds after the nurse injected it I had to pee! Now! And two seconds after that, guess what I needed to do? The chemo is pretty hard on the bladder, I think in much earlier renditions bladder cancer was a possible side effect, so I really appreciated everything that was done to try and preserve as much as possible. The Mesna, also for protecting the bladder, did not have the same effect of as the Lasix. rapidly repeating trips to the restroom. I thought it a little cruel they gave me the Lasix at bed time. But I cooperated. It does wear off, hence the multiple doses. They also gave me the nice anti nausea medication so I was a little sleepy.
Shane was with me all day. He went out and brought dinner back for us. He could have ordered off the hospital menu, for $12 or something, but we're here in Chicago so why not enjoy all the culinary options available to us. He ordered up some things from T.G.I.Friday's Which was right near the hospital and offered the option of ordering on-line for pick-up. And which we had never tried before. See? We're trying new things already.
The next morning, not knowing when Shane would arrive or what he would bring, I ordered breakfast and a coffee for myself. Just as I finished eating, Shane arrived with a latte and some treats. A breve latte to be exact. Funny story but the first time he ordered, the barista didn't know what a breve latte was. So he explained. She remarked that is how she drinks her coffee, but never knew it was called a breve.
Fast forward, we finish up the hospital stay, get our discharge instructions, its still funny to me how normal I feel having Dr. Burt stop in to check on things. Shane brought the wheelchair in the event I was to tired, we picked up my prescriptions and stopped for lunch at Beatrix. We were free.
To do nothing. Almost. Five days later I got to start the Granix (unpegged) injections to encourage the stem cells to keep moving so we can harvest them on Friday. It sounds kind of macabre, but they will be kept safe until we come back in a few weeks for chemo bonanza and then we will be reunited. And they will build me a new immune system free of myelin-munching gremlins. AKA MS. Today we went in for blood work and the white cells are dying as they should so we will stay put and wait for Friday.
Shane has lots of work to keep him busy and in a few hours we can start watching election results. Until then I can sit and watch the fun patterns my eyes think they see on the walls, floor, bed cover wherever. I don't know how it is explained in a what is going on here doctor kind of way. But Charles Bonnet Syndrome on Wikipedia is the best I've found.
I would insert the link and all that tricky stuff but that requires lots of skills that are hard to do with one good eye-which about two weeks ago decided to stop playing good eye and jumped in the optic neuritis pool. And has resulted in some awkward depth perception problems. I get why they paint curbs a different color sometimes. Pouring a glass of water into a glass cup often results in me watering the counter. So I'm just going with water bottles now. Pre-filled.
Time to eat dinner and get ready for the evening ahead. I pray its not a long one and everyone stays civil and polite. Given Clinton's penchant for pantsuits, I think I can also say
"May the best man win!"
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