Monday, December 12, 2016

One Foot Through The Door

I figured it was time for and update and to record any events I will probably forget but might want to  keep a record of. On our evening walk last night, I remarked to Shane how surreal it feels now. We were done with the chemo. We are in Chicago. We are not on a waiting list hoping for a date to start treatment. We applied. We came. We got accepted. We got it done. We barfed. We ate  Bugles at 2am, ok just I did.  And the nurses predicted, we reached  the I'm  bored stage. Which is an ok place to be. Plus it's snowing outside like a snow globe so it's a very cozy way to be bored. Shane was so bored he had to go for a walk. In the snow.

This morning  greeted me with a red velvet cake with the number 0 on it. I feel about 39 years younger. Dr. Burt came in and said he was sorry we were spending my birthday here. I told him it is the best way to spend my birthday ever. (Though the birthday Shane took me to Bora Bora was pretty epic too.) then he looked at my scalp and called in some cream to help clear up the rash. Which is perfectly  normal and doesn't bother me, but I can't see it. I'm also wearing my cap less, just to avoid any extra irritation.

Next Shane brought me a slice of deep-dish pizza. Which I thought would be my lunch, but 30 min later I was ordering a turkey sandwich.  (It's ok, Precious. You've been through a lot this week. And the nurse told us about a different place which will make your crust with BUTTER in it! We like butter.So definitely putting that on our follow-up visits list.)

I realize these sentences/thoughts are all over the place. but as I feel my brain thawing it's  just all coming out. Add to that the emotions, the constant hunger, the incessant beeping sounds, and it's a real party. In my head. Grab a cube of butter and join me!

Poor Shane. Now that he has had some alone/reflective time, he's gathering things to share and realizing how much is not out there that should be there. I do ok in a pinch to bounce ideas off, but still a little slow on the uptake so there is still some restlessness. I told him he needs to start a modern day  Salon.  He's a bit of a revolutionary. for sure, and I think it'd be a perfect fit. No vapid, glossy magazines to distract from the real work of sharing real ideas with real people (not that there is anything wrong with some distraction from hard work when your brain just needs a break. I totally get that.) But that it is not Shane. Apparently the chemo did not fix my whole phone not sharing pictures problem. I did get one of Shane. staring up into the snow, contemplating the universe, as is his wont. Which  I think would have been a runner up for Rodin's final model selection. It's the one I would pick, but I'm a bit biased when it comes to m husband. Which I have every right to be. My brother is very gifted, maybe I'll commission him to sculpt it for me. It's freezing out, so Shane is wearing clothes so I don't think it would be awkward for anyone.

Hooray! Room service is open so I can order breakfast-snack-lunch-snack now! Someone had the brilliant idea of letting people schedule deliveries  at certain times. And the food just keeps coming. But they do allow the staff to re-group before 6am so sometimes I feel the gap if I didn't stock up well enough. I really don't know what I'm going to do without the kitchen staff when I get home. Haha! Just kidding. I've got six kids at home. Most of whom are safety certified in the kitchen. And they are all excellent cooks. I guess I will survive. (Ooh! We can have tasty snacks for Shane's soirees! What a good idea.)

Another good idea was Shane getting  Roku for keeping us entertained over the past however many days it has been? The nurse last night remarked our t.v.  was still working! Some patient's screens had been compromised by the snow. We never noticed anything and were completely insulated from any issues and never had to wonder what new menace The Flash would be up against next. Even though it had already been taken care of. Previously. It's feeling like they just grab something out a bag and use it again. There is no end to how many times someone needs to be defeated. Sorry, Ape. your number is up again. Shane just pointed the little black stick at the screen and we were off. Brilliant! I don't know how it works but it does and I'm grateful and think they should be standard issue for anyone  admitted  to these floors. The nurses are all Florence Nightingales, but they can't be expected to do entertainment too.

FYI, just wanted to let you know I fixed my computer with one weird trick Shane showed me. I turned it off and on! YOU don't need to send roses or anything. Just recording for posterity.

Nurse said some level of something is low and I might need platelets today. Bring it on. Here is my arm. It is so nice to be able to just trust them to watch for things and take care of it before it gets close to being an issue.

The tests confirmed the chemo did not confer any superpowers on my memory abilities. And the therapist says he won't be seeing me again. I thought we were friends. But if he wants to graduate me, that's ok too. Maybe it's Stockholm Syndrome, but I feel sad about leaving everyone. With the added scalp treatment twice a day, it is really starting to feel like a resort. But their goal is to get me back to the real world. Which is my goal too and I am so incredibly grateful for all the work it took from so many people to get me here. It really is overwhelming.

As is my appetite. I think Munchausen syndrome might be taking over now. Good thing I planned ahead and ordered lunch already.

Friday, December 2, 2016

The Groundhog Day Effect

Ok. Not really. Yet.

It's only been four hours since we signed in downstairs, but it feels like a bit longer. We are both pretty tired from not much sleep last night. I don't really want to take a nap in the event it messes up my sleep tonight and "sleeping" in a hospital is difficult enough already.

We got situated easily enough. Met the nurse, Rachel. I know because she put her name on the board. Which is brilliant as names are as easy for me as numbers to remember. I'm sure eventually I'll get all the names down, and then hopefully it will be time to leave.

Shane ran "home" to get a few things and I fully expect he will end up falling asleep. Which would be good for him. I'm glad we decided to plan on him staying at the condo. It might help to break up the days a bit more, gives me the opportunity to send laundry back for him to wash, should afford better sleep, and then it can feel more like a date when he comes to hang out. Which he can apparently do as much as he likes, with no set visiting times etc. Just some preventative hand washing etc when he comes. He can even bring me more food should I want to augment my room service meals. Several patients have listed places that will deliver for a dollar or so, so I shouldn't have to worry about going hungry. Which is good, as I am already about 5 lbs. down from our visit in August. I wonder how much hair weighs? I did lose a bit there!

We got all the vitals done and blood taken. Once those come back and Dr.Burt  comes by, we can get the go ahead to start the Cytoxan for today. I'm really hoping it will be like the first time during mobilization. Only thing I really noticed was the itchy head, but that went away quickly. But I think I get the same drug all five days so it might have an accumulative effect. Which I guess we will find out. Then after that I get my stem cells back! Which seems crazy early. I feel like I should wander for 40 years or something at least. But maybe once the full side effects settle in  I'll wish I could trade it  for forty years.

While I wait for Shane I thought I'd update a little here, and before the chemo drugs get started. Yesterday we got the PICC line placed. Which, again, was not a huge ordeal. Except the doctor was the only one  there at the time to the wait time was a little long. She explained what she was going to do (stick a needle with a wire attached and thread it through my upper arm until it reached the outside of the right? ventricle. The lidocaine worked well and I didn't feel a thing. I could turn my head ( I was flat on my back, right arm stretched out to watch the process and the ultrasound monitor she used to guide the needle.)  I didn't watch when she made the incision, just in case I instinctively moved my arm away, and Shane couldn't be there to video so I didn't get to see that part. But everything else was interesting to watch. And at the end I had a three-legged  squid hanging out my arm. With a long tail extending to my heart. Which could be gross if you think of it as an actual squid. But is ok if you think of it as a really neat delivery method for the drugs, and now they can get blood without poking me. So that is handy.

We can visit with Dr. Burt's other patients in the common areas. For some we have to be masked and gowned. But no visiting in the patients' rooms. I don't know if we can traverse the floors, as some of them are upstairs, but for now I'm content to just sit and play Rear Window.
(Look who showed up and found the picture.That would be Shane. Not pictured here.)

I took a picture of my view, but now I can't find which file it decided to hide it in (no surprises here) but it is not much to look at. Except  it is of the outside world. And I'm stuck on the inside. But its really cold out there, so I'm ok with that. We may get snow in the next week or so, which would be pretty to see.  There is potential snow in the forecast for home. Which kind of figures. We leave. Then we get snow. But the kids will really enjoy it so hopefully we can see pictures.

Got my IV going now. Just Mesna and some fluids. I do get the Cytoxan later today, along with the wonderful Lasix. With the wonderful Lasix, I also get a Foley catheter for 5 days as well. The nurse assures me the Lasix is not so bothersome when you have a constant drainage system in place. So at least there is that.

Cytoxan is dripping in now. Along with the Lasix. Which means they have already placed the Foley catheter. At the moment I am not too impressed. It just feels like I have to pee ALL THE TIME.  But I can't get up. The nurse says my body just needs to get used to it. Once it settles down you won't even notice its there. Well it has not settled down yet. So like I said, I'm not to impressed.
It just means another bag to hang on my IV pole, which is sadly bereft of any Christmas decorations. Maybe that can be Shane's mission tomorrow.

Today he did find me a scarf. He texted some pictures I texted back the black one. He got he grey plaid one. So we are both happy. Plus its big, almost like a shawl, which I was thinking I wanted instead of the scarf. He told me one of the scarves was $425. So he asked the sales lady for anything that did not contain real gold threads,  or diamond tags  with the misspelled name blueberry. He found one and it is wide enough I can wear it like a shawl so the lines in my arms don't get all tangled up but my shoulders can stay warm. I've been wearing it the rest of the day.

Surprisingly the rest of the day has gone fairly quickly. Shane came back from all his excursions and we traded stories over the order so loukamamades ( I know I'm not spelling that correctly) he brought back for us.

The nurse had already inserted the catheter, which was no big deal and I was curious/excited to see how the Lasix would feel. The catheter was another add on to my IV cart I have to untangle and babysit. So not good from that end. Once my body accepted it, it calmed down a little, But very slowly. After some time I just tried to accept the fact that yes, it felt like I needed to pee but I didn't need to get up. Everything was taken care of. It almost felt like I had started to pee my pants. Turn off freak out response. I'm connected to a big tube with a bag. I don't have to go anywhere.

Then I stood up. And discovered my phobias were real. All of them. And they were in my underwear. And in my pants. Really? It has one job. transfer the urine from the bladder to the bag. Bladder to the bag. No stopping for anything. Especially no stopping to spray down my underwear. You're Fired.

I sighed and called the nurse. I said my catheter is leaking.

She came back and inflated it and told me to pee. Still leaking. I asked if we could just ditch it. She said maybe. I needed to pee again and then call her so she could ultrasound my bladder and see what was left. So of course I didn't have to pee for hours, despite the half liter of water I just drank. Finally I did. She checked. Nope. Too ,much urine left. She paged them to come back and re-insert the catheter. Which, by itself is not a big deal. Babysitting it just gets really old. So I'm waiting for that now. But please, take your sweet time before tethering me to a urine receptacle. The only thing I have to look forward to is sleep. And Shane coming back to visit in the morning.

It is kind of surreal to actually be here. In Chicago. Getting HSCT under  Dr.Burt. Who I will probably see this Sunday. I feel like it has still not sunken in. Having made three trips in barely over three months does make everything feel a little ordinary. I did get a dose of the rATG today. Many people said that was the worst. I'm fine for now. Hopefully the repeat doses over the next four days will be the same, but I doubt it. Shane asked the nurse what the 'rabbit'(that's what she called it) is for and apparently it depletes certain types of cells and something else. You, or I, will have to ask Shane. He was there. A rabbit is involved somewhere

OK I'm fairly certain some text disappeared without my permission. But its too late to hunt it down. So I'm sorry if some of this sounded funny. Got the new catheter going. So far so good. The Benadryl has not worn off entirely so I think I'll grab whats left and try to get some sleep.