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.