Thursday, November 10, 2016

Just waiting.....still.

So I had envisioned keeping a very detailed account of our trip. I really appreciated reading other patients HSCT stories. Now I'm just really impressed anyone got anything written ever. Seriously, yesterday's post took me two days,  50,000 backspaces, heavy re-writing, and it was still not what I had wanted it to be.

Shane went out to get some dinner for us. My appetite has been a little more voracious since the steroids, after the chemo, so I'm trying to keep up and maybe store up some reserves  for the nest trip. Once we were discharged I felt a little uncertain being away from the doctors' constant care. We were told to take my temperature twice a day, and if it ever got to 101.4 go straight to the ER and page Dr.Burt. Easy enough. Until the first day it climbed to 99.1. Then the next night 99.6.

Was this ok? does it mean we should go in? We didn't know. Finally I found some other patient stories, and yes it was ok. Just means things are working. But if your get to 101.4 , head in. I don't know what that would indicate but I know they would take care of it. It would have been nice to know 'Hey, your temp is going to fluctuate a lot but that's ok.' I guess that part got left out.  While I am documenting 'things I wish they'd told me', let's just add a few more.

Like ' Hey here is some anti-nausea medication. Take it every eight hours when you need it.'

It should also have included  "but be warned, it is also a killer constipant."

And when we finally arrived at that realization, along with the bottle of magnesium citrate to remedy the situation, a little note attached to  the side saying ' Take tiny sips. Do not guzzle the fizzy syrup like s soda pop'.  would also have been appreciated by some patients.

I feel like I'm complaining a lot. But if this is going to be useful, it also has to be honest. And I wish I had read my story before I came. I would have also brought some books. We watched a bit of the election coverage. And now some of the post election coverage. It was mildly entertaining to see the media so flummoxed by the results, scratching their heads asking 'how did we not see this?'

No one mentioned dry mouth as a freebie. Yet the gift is here. Taking sips of water helps for a second, but I need to sleep. Because I need to get up in five hours. And because I'm tired. But it feels like I have the Sahara desert in my throat. I asked on the forum for suggestions and someone said there is a lozenge in stores, so we will/Shane will track some down tomorrow and at least daytime will be tolerable. I tried turning the shower on to add moisture. I tried breathing with my head under the covers, which only added to the feeling of suffocation. I had already turned off the air/fan which I like to blot out the sirens and street noise at night. So instead I'm up and writing.

There was a protest rally not far from us earlier tonight and the police cars were whizzing back and forth for a long while. But I'm  pretty sure everyone has gone home now as it is calmed down, As far as I know no one was shot but we'll have to wait to read the news tomorrow to be sure. Seattle held its own rally too. Three people were shot, but I think they were not part of the rally and it said they were taken to the hospital. So hopefully that is a good sign Again, we'll have to see what the news says tomorrow.

Next day, four hours of sleep later.

On a bright note, I have not experienced the excruciating bone pain that can accompany the stem cell migration.  So I am thankful for that. Another patient warned the painkiller they send you home with to treat it makes some people feel pretty weird, so Extra Strength Tylenol it is. It's nice to know. And be prepared.

Shane is done with work for the day. Hooray! So now we can have dinner and I can freak out and tell him all my anxieties around tomorrow.  And get to bed early, hopefully. So I can get to my day long appointment hooked up to the apheresis machine and a bed pan.  They say the chair for the patients are quite comfortable, but no so much for the guest. Shane might want to come and go throughout the day. And word is, they don't serve lunch. Which is an awful situation for me  But Shane can get us lunch and we can have lunch together. And then maybe he can put up and details about the day. I'm hoping to be catching up on sleep. Pray they get all the stem cells they need tomorrow, or we will have to go back the next day to get more.

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