I’ll bet you thought we’ve been home enjoying the views and our domesticity. That’s a very nice thought, and hold on to it, as we also hold on to it. This is not forever. It’s only now.
Now, as I type, we are at the infusion center in Sacramento. It’s our second day trip here. We were released on Wednesday, and had one full day at home.
I’d been feeling invincible strong. Our first impression, with ALL was that he’d have the chemo, we’d jump through the hoops, and get to the other side. Then the Philadelphia gene complicated things. But I latched on to a new story of chemo, transplant, a 30 day hospital stay and home free. I latched onto being through this by Christmas and an end to the Annus Horribilis. One by one, my white fingers are being picked off the ledge, and I’m pretty sure I’m just supposed to fall into the unknown. Maybe I can fly.
We didn’t understand until we left on Wednesday that we would not have until the following Tuesday to lolly gag around the house. As we were getting our discharge directions, we were told we’d need to come to the Infusion Center on Friday where they test your blood, check things, give blood infusions. On Wednesday his hemoglobin was on the low side, we thought they’d give an infusion before we left. But they didn’t, and we figured we’d get blood on Friday.
They scheduled us for 1 pm to help us avoid traffic, which we didn’t. At all. And the infusion center would not give him blood because it was too late by the time all was said and done.
Sometimes things get messy.
And they got real messy yesterday. As per usual, we really liked our nurse. She looked at his pik line, and decided it needs attention. He’d been having a reaction to the adhesive before we left the hospital, and by the time we arrived yesterday, it was angry. Out it came. So our trip was not a waste.
Each step of the way, she’d reassure us, everything was just routine. And yet, Dom’s special. I’d react, and she told me to just hang on tight, this is a roller coaster, so always be ready for the next dip. Oh, so many dips. He gets the fever. He simultaneously gets a rash from a new medication that he’d had for the first time. Special. He is so special. This is what everyone kept saying as they packed into our teeny tiny cubicle to look at his line, his rash, his bright sparkly eyes.
I have run myself ragged the past couple days getting the house ship shape so he will be safe from germs. And then he gets “the fever” from the blasted pik line problem. He had a fever before they released us from the infusion center, and we were perplexed as to why they’d send us home, if we’d have to turn around and come back. I was torn, as I had brought nothing with us, thinking this just a routine visit. The prospect of not going home was another layer, in a far too layered sandwich. Did I mention I’m not a big fan of sandwiches? Not really. Less and less. To be honest, I’ve missed my kitties, and the thought of neglecting them so much was hurting my heart.
100.4 is the magic number. I think Dom took his temperature a couple dozen times. 99.1, 99.6, 99.8, 99.4, 99.9, 100.1, 99.6, 99.9, 100.2 and on and on, up down, up. We’ve been told over and over if the temperature reaches 100.4, we have to call, and maybe return to the hospital. They’ve also told us over and over not to take Tylenol because it masks a fever. So, when we called at 100.4, the on-call doctor called us back and told us to take some Tylenol. I’m not gonna lie, I was happy to sleep in our own bed. Wait. Sleep? Did I say sleep? Not much of that happening. My guy was having a reaction to a drug and had a fever from an angry pik line. Sleep is quite elusive under those circumstances. But I did leave him alone for a while and cuddle the kitties. Or at least try too. It was 2000 degrees in our house.
I packed for almost every eventuality when we returned home last night. I decided that I was not going to get stuck in Sacramento without some long pants. My lap top charger. A tooth brush. The essentials.
I am an accidental tourist of sorts, as bags line the door way for our every coming and going.
The visit to the infusion center was far more exciting yesterday than just how special Dom is. I’m not quite sure what the reasoning is, but people with bad news at Sutter like to visit at the most inopportune times. It’s just weird. We spent 1 day shy of 3 whole weeks in a hospital. We had so much time on our hands, in the biggest room with the best view. But for some reason, when we’re squeezed in a tiny cubicle, and our nurse is trying to troubleshoot the special happening, two women from the bone marrow transplant unit think it’s a good time to talk to us about that. Hold me.
We’re already reeling from the news he has a fever, we may be stuck, we have to come back in the morning. We’re disoriented. It’s a new to us place. We’d received other bad news via email that morning; and these two turn up with a binder. A binder of shackles. I have to sign a contract that I will be my husband’s caretaker and will not leave his side, or if I do, I have to arrange for others to be with him. And yes, we do have to move. We were told we should consider finding a place to stay, just in case he spikes a fever. That’s an understatement. For two to three months, he has to report to the hospital or infusion center every single day. Every. Single. Day.
I’m not sure if this is the part in the roller coaster ride where we’ve been climbing and climbing and climbing and the ratchets pulling us up are getting louder, and slower or if we’re in that moment of not going up and not going down, or, are we just in free fall? If we are in a free fall, I cannot for the life of me find the bar holding me in.
It’s all of you.