We’ve been busy since getting to the apartment. Amanda wanted to get out on her first day back. She had a few things she needed to return that she bought when we came up the time before last when the fluid levels were up. It’s hard for her to have clothes that fit when she can gain 30 pounds of fluid in less than a week! We went to an area we’d been to before that had a Marshalls where we needed to make the returns. There was also a Homegoods and a TJ Maxx where we could get a few things for the apartment; Amanda wanted to put her touch on things.
Some friends loaned us an ultra-light wheelchair, so we put that to use while shopping. It’s not your typical bulky wheelchair with leg rests that are always in the way and hard to wheel. Amanda was able to wheel it easily around by herself. It was, however, a bit low for me to push. I ordered some handle extensions so that I didn’t have to walk like a hunchback while I did push. I was a bit sporadic with my speed pushing down the clothes isles, so Amanda quickly took over. One of the good things is she can only carry so much shopping alone, only what fits in her lap, which makes it economical! We had lunch at a nearby Salata, then grabbed a few things for apartment decorating. Then I made a solo run into Costco to get some TP and came out with a cart full of food and some new toothbrushes for us both; that place is a trap!
Amanda was up a couple of pounds on Friday morning; we didn’t think much about it, though we wanted to see what the next day looked like. We needed one more stop before we got home to grab the prescriptions called in during discharge, all eleven of them. There were a couple they needed to order, and some they had to call the doctors about. The pharmacist asked if she had taken this or that and if she would take all the diuretics together. Amanda was just like I’ve been in the hospital 24 days, taking them; just give me the meds! She wasn’t as tired as I expected after the day out. She said the ultra-light wheelchair made getting around so much easier and didn’t tire her out too bad. Although that gave her more time to shop, it would be better on our pocket book if her shop-till-you drop level was lower not higher!
We just hung out at once back. I cooked our first meal in the apartment, and we watched our first movie, so it was feeling more and more like home. We went to bed, and I was hoping to sleep in. The Roomba, one we’d gotten for the hotel room during the first transplant, had gotten stuck in the middle of the night. I never bothered getting it, and it sounded off at 5 am, waking me up. When Amanda weighed, she was up another couple of pounds. That had us a little worried. We knew she’d need to take the Metolazone to help the diuretic get things flowing. She went to take some, and to our surprise, we’d overlooked that it wasn’t called in with all the other scripts. I tried to get on the horn with the coordinator on call. They called me back not long after I called the after-hours number. At first, they thought it was an emergency since I was calling. I explained the situation, and they said they’d get a prescription called in quickly.
We headed back out Saturday, too. I had an appointment to get my hair trimmed. I was taking a bag of trash to the dumpsters, and when coming back, a guy started talking to Tank and called him by name. I hadn’t met the guy and was like, hey how do you know my boy! He had met him when Sybil had taken him out before, and according to her, Tank all but let himself in their apartment. I talked to him for a while; he was a caretaker for his wife, and it seemed to be taking a toll on him. He needed to vent, and I provided an understanding ear. They live directly across from our apartment, yet I hadn’t seen him much. As Amanda and I left, she got to meet him and his wife as they were leaving, too.
Amanda and I would do a little shopping before my hair appointment. She had some more returns made out of stuff she’d just bought since she hadn’t tried anything on in the store. We had planned that she’d wait in the car afterward until I got my hair done, and then we’d go eat. She liked the shopping so much the day before, and since it was easy for her to do herself in the spiffy wheelchair, she just wanted me to drop her off. That way, she could shop while I got my haircut. I dropped her off and got her settled, then went to get my hair cut. She wore herself out a little too much and didn’t want to go anywhere to sit down and eat, so we opted for an in-the-car lunch.
Once home, we worked on the apartment a bit to get things more settled. Amanda still had to unpack her suitcases. We needed a few pieces for her closet and between our recliners. So, with the convince of city living, we had a couple of things delivered the next day via Amazon. We’re just trying to make it more livable for us, and Amanda wants to put her touch on it to make it home.
I needed some things for dinner I’d forgotten, and Amanda wanted a heirloom tomato for avocado toast Sunday. I ran to the Whole Foods down the road. It’s so nice to be able to make a quick run like that; it’s closer to get there than it is to reach our little small-town grocery store back home. I went in to get a couple of things and returned with an armful, including an aged Modena balsamic, a citrus champagne vinegar, and a honey white balsamic that were all on sale! We never got the chance to do much shopping like this when are before, with Covid and trying to protect Aamdna as much as I could, we limited the outing.
We had our first visitor Saturday night. Sybil texted in the evening and asked if I drank wine. I told her I did and cooked with it a good bit, too. She asked if she could bring some over and showed up with three partial bottles! She quickly spouted off all the details of each wine, including the alcohol content. I’d mentioned that Amanda typically sticks with lower-content ones to avoid issues with her meds, but she is definitely not having any right now. It turns out she is a rep for wine and liquor companies. These were fromFlat Creek Estate, a winery out of Marble Falls. She sets up and does tastings at different stores. There were a couple of reds and a white; I had the rest of Pinot Grigio with dinner. It paired well with the creamy shiitake mushroom ramen.
Sunday, we didn’t go anywhere and just hung around the apartment. Amanda was up just a pound but still not headed in the right direction. So, she still planned to do the Metolazone again. We worked on a few things in the apartment. The first thing on my plate was to get the pantry in order. It has wire racks, and I ordered some hanging baskets to maximize the storage. We keep a pretty stocked pantry, so I needed a little more room for things. Amanda worked on her closet, too. We had a side table I needed to put together between our living room chairs. Amanda wanted to rearrange the blanket on the beds, too. So we swapped them around to see how it would look. It worked out, so now she plans to get a few coordinating things for our bed.
When I had initially talked about getting some decorations or paintings out of our storage back home, Amanda told me, “We don’t even have paintings up at our own house!” referencing our home under construction. She changed her tune now that she’s here. There is a high likelihood we won’t return to our home permanently after this, so we might as well make the apartment comfortable. We need to sell our home to help ease the financial burden. Also, if Vanderbilt becomes a reality, the only way we’ll be able to afford that is to liquidate the equity in our home. It’s been our plan to sell our home, move to our downtown place, and remodel it into our forever home for a while now. Once things get leveled off for us, I plan to get a team together to help me finish our remodel so we can get our house listed and sold.
Monday, we have Amanda’s first Daratumumab infusion. It will be once a week for a month, every other week for a month, then once a month for four months. It’s a three-hour infusion, and we have to be there an hour before for labs. On Tuesday, we have a clinic visit with Dr Nair, too. Our plan is to come home after our clinic visit. I’ll make a trip with work back to Houston while Amanda stays home, then return and get Amanda. She has a hair appointment and really doesn’t want to miss it. I’m praying the fluid comes off with the added diuretic, and it doesn’t keep building, and we end up back in the hospital.
Leave a Reply