Relief train and reflecting

I'm still riding the relief train, and occasionally crossing the track and jumping on the worry train. We know worrying doesn't solve anything, so quick as I can, I hop back to relief.

On the whiteboard where all Dom's numbers are written, and we eagerly watch numbers rise and fall, there's a number on the bottom now. Today's reads +12. That's how many days post transplant we are. All the numbers are doing their thing. Dom is doing his thing: Sleeping.

To look over and see the love of my life cocooned in his bed eyes closed, allowing regenerative sleep to take over, I sigh. Even as I write he stretches awake. The machine that holds all the formulas of all the liquids being carefully pumped into him seems to go crazy at night. The smallest air bubble, and the beeping begins. We've traded off, him waking and calling the nurse or me jumping out of bed heart racing and silencing the thing myself. We've both become pros at tap tap tapping the bubbles away and restarting. He's even more pro than I, going as far as opening the boxes and yanking that tube into submission.

On Wednesday, we will have been here for three weeks. In five days, it will have been seven months of this journey.

For seven months, I still find myself giving a panicked glance toward the lock on the door in the restroom that opens into the family room that has lately been more occupied than normal.

We don't know if the fatigue Dom is experiencing is from the transplant or lack of sleep, but I let him sleep as much as possible. I pad around in my slippers and pajamas even at noon in the corridors because I just don't care. There was a marathon here last week. One of our nurses ran the marathon. She has the prettiest voice, and I could talk to her all day. I think she could run all day. The route was just next to the hospital, on the side with the view. From 7 am till 1 pm, nearly all the streets around the hospital were blocked for the marathon. So. Our doctor arrived at 6 am for his rounds. You bet I was still sleeping. And so was Dom. And there we were all groggy eyed and hopefully covered and snapping to attention while Dom has his heart checked and his ankles squeezed. And when you've been awakened enough times by people coming in and out of your room, you really don't care anymore about wearing your pajamas in the hall. (Mind you, I'm not one of those people who wears their pajamas out in public. Those people do exist. I am not one of them. To tell you I don't care says something. I don't even wear yoga pants out in public. Unless I'm running into the market for a beverage. I put the yoga pants on, do the yoga and take them off. ) So, I'm sitting here in my jammies even as Dom has gone back to sleep, "for 20 minutes more".

I'm going to miss people here when we're discharged. Our friend from Santa Rosa is hoping to leave on Monday! He had his own stem cells transplanted the day after Dom, so it's an easier recovery for him. I'm going to miss his partner with the long white blond hair and perfectly cut fringe who looked like an angel walking through the halls.

I've met another woman from Santa Rosa. Her husband is the new full head of hair in the hallway. Her family is the very large family that would come and move into the family room. She is as sweet as can be, and has had to leave a two year old with her parents. When I see them pass our window, 7 months seems like so long ago, when Dom would walk the halls with his full head of hair. It's coming back. I'm sure.

I wonder what I do all day. My day is a blur of navigating Dom's needs or my own needs, punctuated by moving the car. He naps, and if the machine sounds off I race over to quiet it down. I go to the kitchen and run into the daughter of a patient and we commiserate about this situation. The hand of cards we've been dealt. I talk to housekeeping, nurses aids, dietary....there's a steady stream of people in here and I'm a captive audience. Or they are. Either way. The days flow into each other.

We're at the sore throat stage. It was almost a guarantee. The pre-transplant chemo packs a punch and is most felt in mouth and throat with soreness. Dom was feeling good for a couple days, but this has gotten him a bit low. He's sleeping a lot.
I think of his sister Sam a lot. She's the yin to my yang. I waffle between bad cop/good cop. I know Dom is exhausted and in pain, and I want to just baby him. I also know he absolutely needs to walk and shower and do all the things. If he doesn't walk and sit up, his lungs will begin to cave in on themselves and that's a set up for worse things to come. (Cave in on themselves is a medical term. Honestly.) Sam cheers him on from afar, and when I need to be soft with him, she can be the one to tell him to get up and walk. Or, when I need to be firm, she sends him all the nurturing love he needs. It generally works out that way, whether Sam and I plan it or not. 

I think of her at very particular and nondescript places, since she spent some time here. I think of her at a strip of grass just outside the parking lot. Every time. I think of her in the kitchen, knowing she carefully picked things out at the market to entice Dom to eat. I think of her every time I move the car and have to check in and get a name tag. We didn't need to check in with security and have name tags until she came. I remember walking into the room after she spent round 3 with Dom. There was a name tag on her cardigan, and somehow, I just associate that little act with her. We both miss her very much.

The nurses are about to change shifts. I really don't have one complaint. Our day nurses have been so understanding of Dom's need to sleep even during the day. They float in quietly to take vitals. Sometimes we get to chat and be human. I think Dom loves when people talk around him, and he can quietly listen and chime in as he feels the energy.
Tonight, we think we have Dee again. Dee is the nurse who made a joke about Dom's blood type and the need to just b positive as she swooped in our room one night to shush the machine. We've loved her ever since. And yet, she had never been our nurse until just this weekend. It was kind of a joke after a while. We'd see her in the hall and shrug our shoulders like, when is Dee going to be our nurse? And then of course, the night Dom spikes his fever, we get Dee. We were so happy to have her, and then I felt a twinge of guilt like hey Dee, we're the cool low maintenance patient....come be our nurse and run all night keeping the machine quiet and taking 15 vials of blood.

I wish so many times throughout the day that I was independently wealthy. I want to shower everyone here with gifts. For now I try to be as easy as possible, and always say thanks.

So here we are....so far away from seven months ago and creeping ever closer to the finish line.
And for some reason, I'm feeling nostalgic. It's difficult to think that a couple months from now, as we're tucked back into our little cottage, cuddling with our kitties and tackling the overgrown outdoors, I will be nostalgic for pieces of the most difficult year of my life. But it would be true.