Wednesday, November 30, 2016

And We Are Off! Again.

It feels like we just got home. And now we are preparing to go back. Somehow I thought the Thanksgiving break was longer. But now it's already over and I am collecting things to get me/us through the last phase. I will be in the hospital for almost three weeks straight. I think the isolation part is about 10 days, but it sounds like you can still have visitors for a little bit each day. As long as they are sterilized. And not sick. So if Shane gets bored he will be able to stop by. Not that I'll have much in the way of entertainment for him. Unless the psychotic episodes manifest themselves. But then he might just want to stay at the rental instead. I think he does have some meetings scheduled so that could help break things up for him. I wish I could find a great series to get into and maybe I wouldn't even notice all the pokes and medications. Unless, which I'm pretty sure they do, they give me Lasix. Nobody could not notice that. I've been getting tips from other past patients on what to bring/how to prepare etc. Shane will be there and can get bring me anything I need and the hospital has all they can offer. But it was good to hear what other people suggested/found really useful.

One person suggested a water bottle. Which I think is really wise. The little Styrofoam cups with a straw sitting on your bedside table are recipes for disasters. The night in the hospital I was trying to get comfortable after my last Lasix induced trip to the restroom and the pillows kept crowding me so finally I took one of them and tossed it to the end of the bed. Somehow on its way, it swiped the side table and I felt cold water splash all over my side and the bed. It wasn't too bad, but I was concerned the water might not be good for the electric bed, so I called the nurse and she changed the sheets and gave me a new gown and I crawled back into my crinkly-ever-inflating-deflating-crib.
I asked the nurse if there was a way to turn it off, but she said no. I'd lose all the electricity driven perks.  I wasn't about to try sitting up on my own so I just toughed it out. Plus, the call button wouldn't work and then who would change my sheets at midnight? 

Shane would have , if he were there, but, like I said, we both thought it would be a good idea if at least one of us had a restful night's sleep. Another tip garnered from the veterans for the big stay: get the nurses to adjust your vitals/medication schedule where they can to maximize uninterrupted sleep time. For my one night stay nobody poked or prodded me for a good eight hours so I was pleasantly surprised when I woke up feeling pretty rested the next morning. I think Benadryl was the only  sleepy drug they gave me. I think the rest was just me being tired. From lying in bed all day?

The flight back to Chicago this time was pretty uneventful. I watched 'In the  Heart of The Sea' which was entertaining, and sadly reminiscent of 'The Seawolf '. Sad, because it wasn't 'The Seawolf.' So it was over in a couple of hours. I've never read 'Moby Dick' so at least there were no spoilers. (Haha)  But both books  had boats. And lots of cold water. It almost makes Shane's commute seem doable. And it made me very thankful for electricity. If only the backers of the whaling boats could have seen that one coming. (No Chris Hemsworth! You don't need the kill that whale. The light bulb is coming.)
Who knows, maybe the backers of the boats backed those too.  Maybe I'll research it later. But probably not. I've got a trip through the Amazon to get through first.

 Our last trip we decided to bring the wheelchair Shane got me when my legs were more squirrelly.  Oh boy! The airport was an adventure. I wanted to walk as much as possible before sitting on the plane so we walked up to the security lines, pushing the wheelchair. It was like they didn't know what to do with us.

Who is the chair for?

I should have brought/taken a video of me walking a few weeks before. Shane said it was pretty bad. Which was why he ordered the wheelchair. I only know how it felt, but that has always been worse than the actual presentation, I think. But I'm hoping we won't get another chance for video. My legs/balance/walking have improved quite a bit from our last trip. And though I probably could make it to the Navy Pier, it doesn't mean everything else (I'm talking about you, Bladder) would cooperate. But I'm ok with just  getting glimpses of it  too. And saving up energy for when I check in to the hospital on Friday. I get the PIC line put in tomorrow, and so far people say it is not a big deal. Of course it will be staying there for about 3 weeks, so that might get old. But oh well. Like I said, we didn't come for the view or the tourist attractions. So it will all be good.

Today we have a rest day. And tomorrow we get the line put in, but I think that only takes up to an hour at the most. Then we can pretend we are just here on vacation. After Shane finishes his work for the day.  I did bring 'The River of Doubt' to read ( I know. What's up with all the boats and water stuff?)  I really don't know. I guess I wanted something to feel adventurous while I'm tied to my bed and IV pole. Or it was the first thing I saw on the shelf as we were  walking out the door. Take your pick.  Grandpa is reading 'Swiss Family Robinson' to the kids back home, so I might read that one too. You never know.

Ok. Time for some lunch and some last minute drugstore purchases. Oh, and maybe some of the  online Christmas shopping I was wanted to get done last trip. I'll have Shane take away my devices for the heavy steroid days, as another patient warned about shopping at those times. Maybe getting home will be like Christmas for everyone. 'I don't remember ordering this.' Where did this come from?'

Could be fun for the whole family!

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.

Tuesday, November 8, 2016

Greetings Chicago! We come in peace.

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!"