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CAR-T Day #124

“Success is not final, failure is not fatal: it is the courage to continue that counts.” – Winston Churchill

Wow, what a wild ride we keep having. Good stuff, challenging stuff, crazy stuff, and ARE YOU KIDDING ME STUFF!

Every once in a while, I say, “Can we just go back to Little Rock?”

We didn’t do much sightseeing on the way home. We did stay one night in Las Vegas, and a friend popped over to see us quickly before he headed off to work that we hadn’t seen a long while which was lovely. Other than that, we just made good steady progress each day. We had great weather and little traffic. Dave enjoyed driving some of the way home. 

After being gone for three months (leaving in a hurry), you can imagine the many things that needed attention but wouldn’t get it for quite a while since we had so much else to deal with getting Dave sorted here at home. We had a kitchen sink leak (replaced faucet). A pantry moth infestation I’m still tackling. Nasty little pests! Gutters were full of leaves, and it was raining nonstop when we got home. We had to pay someone to come and take care of it, which took a while. And then dust, spiders, etc. It reminded me of growing up in rural PA during the summer months when we visited our family farm as children. If a house became vacant, the roof collapsed within a year! A structure needs people!

So on to the more important stuff – Dave! It seemed like it took FOREVER to get his immune system stabilized. Much like we were experiencing when in Little Rock. He had to get some support every other day: platelets, blood transfusions, and growth factor shots. Our clinic isn’t 5 minutes away, like when we stayed at the Goodness Village apartment. The nurses were all so happy to see him. They all wondered what happened and where he was. You would think… Oh nevermind. I went in with him until his dad returned to stay with us. 

Dave finally started to stabilize, and OMICRON! Are you kidding me? He looked at me like I had done something! “Nuh huh, buddy! I haven’t been anywhere in over a week!” So I pulled out all my witches brews and remedies to help minimize the symptoms. The clinic put him in isolation, which meant they had to come downstairs and get him from the car and take him in a private elevator to a private room. We postponed our return trip to UAMS. He continued testing positive even after 20 days, so we delayed our second effort to get to UAMS. Now we are scheduled to go in mid-March.

In the middle of trying to handle all the covid symptoms, Dave stopped taking his acyclovir. I didn’t notice as he has been managing that just fine for several years. He got SHINGLES! ARE YOU KIDDING ME? It appeared on top of his head and down to his left eye. The left eyelid was very angry red and swollen. Can my guy catch a break? I had a fantastic antifungal ointment and started applying that to the surface and then icing the eyelid. We got it gone in 5 days! That’s exactly the break we needed. The only thing I wanted and did not get was steroid eye drops prophylactically. I didn’t think our eye doctor would appreciate a covid positive, shingles patient traipsing into her practice for a look-see. I’ve asked Dave to add it to our visit when we are in Little Rock (I need to ask him again to call and see if he can get a retinal scan). 

Myeloma gone. CHECK

Immune system stabilized. CHECK

COVID gone. Fingers crossed.

Shingles gone. CHECK

He’s walking up and down the stairs and all over the house without a cane. Sometimes he looks terrific doing it, and other times he’s pretty gimpy. He hasn’t been doing the exercises which bother me, and I mention it. Of course, we’ve had a lot going on. 

Anyway, that’s the 4-1-1 in the continuing Puente Saga. Overall, it’s been good news with annoying stuff mixed in here and there. I am granting ourselves lots and lots of Grace.

(On another note, the other CAR-T patients are all doing well and recovering. Each of us has had our very own unique journey. Another patient got his cells today.)

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