I know I haven’t posted in a while; I’m trying to wean y’all off of daily posts or even every other-day posts! With work I can see it is going to be hard posting. Like traveling posts, I don’t much like writing at home. I guess it’s easier to post when I have nothing going on in a hospital setting, too. I’d planned to catch you up yesterday during our long clinic visit, but it was a relativly quick appointment, I didn’t even pull my Mac out. So unless we are in the hospital a good bit, don’t expect daily posts for the foreseeable future. Our trip home was way too quick and filled with work for both of us. I had many reports to get ready and present at my union meeting, and Amanda worked tirelessly on some of the same for the church. She put more time into working than I did.
We had planned on leaving early to come home Saturday morning since I was home at a reasonable time Friday night, but we were still off an hour later than we’d planned. Tank, when he realized he was going, was an excited boy. He’s always glad to find that he won’t be left behind! It’s funny how dogs get; when our bags come out, he knows what that means, but he isn’t sure if he’s going, so he’s sad until he’s sure he’s going along. He is a good travel dog. I’ve just been in the habit of not letting him out on the trip. I think it is more of a regular schedule for him. If I do get him out, he doesn’t go potty or drink; he just relentlessly sniffs. The only time I let him out is if he hot boxes us; then I threaten him on the walk with a stern You better poop talk!
We found a good taco spot on the drive home. Being the weekend, we skipped Buc-ee’s; that place is too busy sometimes. We have a particular gas station we like to stop at in Weimar. Exit 682, I’m getting to know the road too well! It’s a small gas station run by a Middle Eastern man; I don’t think he’s ever not been there when we’ve stopped. There is a Mexican restaurant connected to it. We’ve never eaten there, but Amanda thought a taco sounded good. They had our go-to tacos, papas a la Mexicana, add beans. They also had homemade corn tortillas and three great salsas. It was a good find, and I’ll likely be stopping there coming and going to work since it’s about halfway to San Antonio.
I wanted to do anything but just to go home and sit. Our friends, Nathan and Kim, were already in Del Rio for their kid’s prom and would be waiting all night to get them. So we unloaded the car, got a few things around the house done, and then headed to have dinner with them. I’ve been driving so much that a thirty-mile drive for dinner on top of a 6-hour drive home was nothing! We hung out with them for a while. It was good to catch up. After dinner, we went by to see the kids at their prom. It was a small area, so we didn’t go in. We were just creepers looking through the windows from the parking lot! Kynley and her friend came out to see us for a bit, though.
We planned to go to church, but the question was, how do we keep everyone from hugging and being around Amanda? So we showed up just before service and hung out with YJ until it started. I still wanted to go around and see everyone during the meet and greet. So, I told everyone that Amanda was there but was hanging back to distance herself. I pretty much said you can hug me, just not Amanda! It was so good to see everyone, and I think most were surprised to see us both there. After church, we went back to Del Rio for lunch with a group of friends. It was good to have a little normalcy in our lives.
I felt a little sad that we’ve been gone so much, but I also felt revived spending time with everyone. In Exodus, the Israelites go out to battle against the Amalekites. As long as Moses held his staff up, the Israelites were won, but if he lowered his arms, the Amalekites would gain a foothold against them. So Arron and Hur held his arm up for him, and they were victorious. My “arms” have been a little heavy and weary to hold up. I felt this trip home was like they were being raised to help continue the fight. This will be a long road for us, and as I covered in my last post, it feels like this will be much harder than anticipated. Trips home to be around our church friends and family or visits in Houston will help to revive us and sustain the battle.
Sunday afternoon was nothing but work for both of us. We got back late afternoon, around 4. Amanda met with YJ and the deacons to review the budget and present a financial report, so I just dropped her off at the church. Neither of us thought we’d be gone that long and didn’t bring her Furoscix. I had to run home and grab that for her to put on. She still had to do a few more things and help train someone on how to do a few things that needed to be done in person. She is still keeping up with the accounting and children’s ministry from afar, but there are a few things she needs help with at the church in person. She didn’t get home till after nine that night. I worked solid on my reports, but not as long as she did. I had dinner ready when she got home, our quick go-to meal of pizza and cauliflower/broccoli wings. She was on the phone for hours after that, handling a few more things for work right up until we went to bed. It seemed we would both be working the entire time we were home.
My union meeting was in Del Rio on Monday morning. I met with the trustees before the regular meeting to review the 2024 books and reports and get them to sign off on everything before I sent my annual report to the international office. After I was done with the meeting, I had a few other things to get done while I was in town; top of the list was an oil change. I had it changed before we moved into the apartment but had already but about 6,000 miles on the Yukon in 5 weeks! Afterward, I rolled into town, grabbed Amanda, threw our bags in the Yukon, and hit the road.
It was a fast and furious trip. I think three nights would be best, but we needed to be back to the clinic for an appointment with Dr. Nair and labs on Tuesday at 8:30 am. No rest for the weary, I guess. It was so good to be home, even for a short time; seeing everyone at church and having dinner and lunch with some of our closest friends was great. However, going home brings us back to the root cause of all of this rejection: a person. I could mad type on this keyboard all day about it, but I’ll leave it here since God cut it off for me. I was angry in my thoughts about things on the drive back to Houston. I wanted to talk it out, but I wasn’t about to talk to Amanda about it. So I was thinking it out in my head, and this quote came across the radio. “Until God opens a door, praise Him in the hallway.” It was what I needed to take my mind off of things and focus on Him.
Soon after, an infusion agency called and wanted to set things up for the at-home IV Bumex. The medicine was approved, and they said we could come in for the teaching and weekly PICC line cleaning or set up home health. Amanda quickly told them we’d prefer home health. They just needed the day the PICC would be placed to finalize everything. The coordinator was holding off on that until we were sure we could get everything done at home. So Amanda called and got that all scheduled. We were hoping earlier, but the soonest they had was Thursday. By this time, Tank had finally settled down for the ride and was sawing logs on one of my car pillows. Before this, he fell asleep with his head in the car seat protector!
The rest of the drive wasn’t bad. As soon as we got to the apartment, I unloaded our many things and got the Tanks set up, broken down, and put up. Well, except for his bed, which I’m still borrowing. I’m holding off on getting a good folding bed for myself. A retired railroader I worked with for years and was a local chairman for as long as I can remember had some advice. He said to talk with my local chairman and see if they could come up with an agreement for me as a hardship to let me reverse lodge in San Antonio. I hope this will work out; if not, I can get by sleeping in the Yukon.
We were some of the first to arrive at the clinic early Tuesday morning. When it was the guy’s turn ahead of us, the one ahead of him said, “Good luck, she’s fired up today,” speaking of the lab tech. She is a hoot and always a blast picking on everyone. She is one of the PAs we used to dislike much, but she has since grown on us and was the first to see us. We have seen her a ton over the past few months as she rounds with the doctors. She had asked about support and if we had any. We both exclaimed how we had a great church family. She asked about Vanderbilt. I laid out the plan to go up and get approval but will wait to be listed here with Methodist first. I think she thought about it, and with the gravity of the situation, she wanted to make sure we had support and counseling if needed. For me, too, mentioning caregiver fatigue was real as well. She wanted us to know they were there for us and that she could reach out to the social worker if we needed to. We all got a good laugh when she said they’d help with anything they could but quickly said not money because she was broke too with three kids at home!
After she left, I think the gravity of the situation set in with Amanda, too. She was a bit tender and was feeling terrible from the 20-plus pounds of excess fluid and wore out for the too quick of a trip home. She teared up, saying she was not sure how much longer she could take it. We really need to get this fluid off and may need a readmission if we don’t see any improvement with the at-home IV Bumex. It’s the last thing any of us, including Dr. Nair, may have to do. I’m really praying we can get the fluid off at home, though. He wants to stop the Furoscix once we do the IV at home. I don’t think that is the greatest. He doesn’t know that because he wasn’t making the calls in the hospital, but he’ll see soon enough and can adjust. We’re sticking with weekly clinic appointments. As long as we do the weekly mab treatments, then we may spread them out.
Later in the day, the infusion center called to finalize the home health side of things. They needed an end date for the Bumex. Amanda explained it was indefinite. The lady still needed a date, though. Amanda then explained she was in heart failure and waiting for another heart transplant. Then she felt bad for asking and apologized to her. She was going to contact the coordinator for a date, but that seemed to be all that was holding things up. Home health was scheduled for Thursday afternoon after the PICC line is placed.
We’re at the cancer center now for the Daratumumab infusion. I went ahead and took a vacation day to keep me home through the PICC line placement and the first couple of days of the IV Bumex to make sure things went well. I think Amanda wanted me to stay anyway. I made sure she ate something beforehand, the mab. She seems to be doing good; she is just sleepy.
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