We’ve been straying put since Amanda hasn’t been feeling good, just going to the clinic and cancer center when we have to. I didn’t even crank the Yukon up Friday through Sunday and only walked outside the apartment complex to take Tank for a walk. When we were packing things up to move here, Amanda told me to get the Xbox. We’d gotten one when she was recovering from the transplant and played it a good bit but had never even played it at home. The Xbox was good for helping pass the time when we were stuck in the hotel room; you can only watch so many movies. It proved the same for us this time. However, some of the intense gameplay times would make Amadnas’s heart race a bit higher than it already is!
One new game I picked when looking for good new couch co-op play games was called It Takes Two. The game’s premise is a little odd, but we are having a blast playing it. A couple about to divorce is turned into their daughter’s dolls, and they must work together to get through the labyrinth of their home and shed as these tiny dolls. We are fighting off all the mad, neglected household items, from the vacuum cleaner to a very feisty toolbox. It’s somewhat of a problem-solving game, too. As the title states, lots of play takes two to get through the levels.
The IV Bumex at home is going well but not producing the effects we were hoping for. It is an easy process, much like the IV antibiotics we did this time last year after the sternal infection. The main difference is there are needles involved this time, but they were not for poking anyone. Well, maybe Amanda would like to jab that thing in my butt every once in a while! We have to use the needle to draw the Bumex out of the vials, 3mg per dose, and the vials are 1mg, so repeat three times. Amanda, being her extra self, wanted a cart to put everything on. So we ordered a cart from Amazon and had it the next day. The abundance of the Amazon wish list items and our own orders garnered me the name Amazon guy from one of the other new residents! I think we should get at least some kickbacks from the top few places we use and tell you all about from StarBs, Salata, Amazon, HEB, and Whole Foods. They should be sending us some gift cards at a bare minimum! Amanda outfitted her cart with an extra plastic cubby from the bathroom. We also got some dental bibs to put on the top to wrap everything up when we’re done. It has three shelves with a wooden top over the last one to put everything on. It is a pretty slick setup, I must say.
After we watched church Sunday morning, it was time to get the place cleaned of clutter. Amanda had been working on a shadow box for Zoey, but the progress had stalled. I had to encourage her to finish it repeatedly. Although my encouragement may have turned discouraging, she probably thought it would have been a good time to insert one of those needles in my butt! She finally finished it, though. It looks adorable, filled with a picture of Zoey, her collar, name tag, paw print, favorite toy bone (she’d had since we first got her), and a mini lamb chop. Amanda was pretty sad after that. To get her out of the sad place, we played the Xbox, not as the divorced doll couple this time but as soldiers killing alien bugs and it did help!
Monday was infusion day again. This was the last of the weekly infusions; now, we go every other week for a month. They put us in a corner cubicle with short walls and next to the hall. There was no privacy, not even a curtain. I asked for an actual room like we’d had before, but none were available. Sadly, they wouldn’t use the PICC to draw labs, either, so she had to get stuck. We also asked them if they had orders for the Bumex, but they didn’t. It was a good thing I had packed my man purse so I could be a man nurse! I got everything out and went to work. I just needed some scrubs to go with my syringe and needle to make me look as official as I felt with our neighboring cubicle husband peering over the short wall at me holding a syringe!
While they were getting things ready and I was flushing the line, the tech came back to move us to a room, not the cubicle. We were already settled in and passed on it. What made me mad was that the guy that was in the now available room came in about the time we did. Whatever he had done was quick because he had only been there for 30 minutes or so when he left. I wondered why we didn’t get it over him since we were going there for five hours.
Amanda’s phone rang, and she handed it to me; it was Methodist calling to schedule an appointment. She knew it would be easier for me to figure out dates, so I handled it. The earliest they had was in May, the day we were leaving for Nashville. I had to think about that one for a second but decided it would work well since I would be off anyway. Also, we will stay in northern Louisiana with my aunt to break up the trip, which is only a 5-hour drive. So we could easily leave after lunch and still be at their place at a decent time.
After I got that all lined up, Amanda was getting groggy from the IV Benyadrl and already dozing off not long after. She was out like a light! I ordered some sushi, and when she woke, we had lunch. She did well through the infusion but tanked later in the evening. That seems to be how it will be for every dose. At least we are starting to spread them out.
Tuesday was clinic day. The same story with labs; they wouldn’t use the PICC to draw. She had to get stuck twice, too. Turns out the PA was mad they even drew the labs since everything they needed was drawn the day before at the cancer center. She said next time, not even to have the labs drawn. Dr Nair was interested in the appointments with the other centers. We told him we finally got an appointment with the Director of the Transplant Program at Methodist. He already knew and had been talking to him about seeing us since they were playing hard and fast with the 6-month rule. It seems he’d called in a favor for us. We decided that it would be easier to drive with all the meds, PICC line, and whatnot. He seemed apprehensive about that when he was the same way about flying at first! As he looked at his phone, he was telling us all the centers on the way where he knew people in case we had issues. He worried me a little when he was spouting out who he knew. I think he is just a little worried either way.
We pretty much planned to request an admission to get the fluid off. This was what Dr. Nair had hinted about during our last visit. He was just waiting for us to get through the loading doses of the daratumumab. That way, we would have a two-week “mab” holiday instead of being constrained to a week. It seems to be a big deal to swap to doing that in the hospital vs out-patient with the insurance. He was on board with an admission and could see Amanda wasn’t doing well. When the PA first came in and asked how she felt ok. If you know her, you know she was just jovial about being “ok.” I told the PA, “She feels like trash and just won’t say it!”
After the appointment, we had a little time to wait for a room, and the coordinator said we could get lunch or go home, and that was just what we did. First, we had to do a dose of the Bumex, though. I had the supplies in my bag, and we laid everything out on the console and did it in the Yukon; not the first time we’d done IV drugs in the car before! After that, we needed to make a Costco run for a few things. Then we grabbed some tacos from Torchy’s on the way to the apartment.
We weren’t home much past the time it took to eat before they called that a room was ready. Amanda hadn’t even packed her stuff yet. It was easy to get ready, but we knew what we needed. I got the all-important snack bag ready, she got her jammies, blanket, pillow, and dopp kit all packed, and we were off. Tank was a little excited thinking he was going and then perturbed when we left without him. The poor guy is still anxious about us coming and going with bags.
I was scheduled to get out to work tomorrow morning, but with the admission, I will stay off again. I have some union work to catch up on, so I can take off that status and not burn any of my sick or vacation days that way. Sybil is gone, too, so we do not have anyone to watch Tank. After she returns on Friday, I plan on working some trips back to back while Amanda is in the hospital. It is a little easier, and I can breathe when leaving with her in the hospital and being taken care of by a nursing staff and doctors. I will post more on the admission tomorrow; I just wanted to get y’all up to date.
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