Family visit

 Amanda and Robert like to come to Tallahassee from time to time - partially because they worry about me (sweet of them, and I appreciate it) and partly because Lynn Haven, even 3 years after Hurricane Michael, doesn't have trees.  They miss trees.

It was spring break, so Zeke was out of school, and they thought they'd bring the RV and stay at the campground a few miles away from me for a few days.  Don and Della have a new RV and they decided they'd come too, to check it out.  After they had time to come in and get settled I drove over there to join them, sit around the fire pit, have a cookout.

It was fun, and the campground is on the lake, which is pretty.  But it felt strange walking up to the family gathering without the keystone of the family - the person who linked me to them. Della's brother, Amanda's uncle, my husband.

Don and Della left a day before Robert and Amanda.  On their last day, it was raining, so they came over to hang out at the house.  They had taken Zeke to the mall (realizing that between their mall being destroyed in the hurricane, and Covid, which kept them from going indoors anywhere, that Zeke, at the tender age of 8, had never been on an escalator.  The mall was as good as DisneyWorld to him).  They had picked up Cinnabons at the mall.

I was putting them on plates.  Robert looked over, and asked "why are you putting out five?"  There they were, five plates, five Cinnabons.  For a moment I was blank.  I mean - it was obvious.  Two for us, two for them, one for Zeke.  Only there is no "us"-  only me.  I muttered something about brain fart, put one bun back, and somehow kept my act together.

Now, back in 2020.  I threw away my diaries from that time - but we were in one long waiting nightmare.   Every night Bob gets blood drawn for testing.  Every morning the nurse writes his numbers down on the dry erase board.  We hold our breaths, waiting.  Neutrophils: <.1 (because for some reason they can't say "0."  It's the neutorphils we're waiting for.  When they start showing up, it means that the transplant is working and all the trash that Bob's body has been accumulating for the last two months will start to be cleaned up - and he'll start feeling a little better.  They were supposed to show up within a week from his transplant.  They didn't.  Well, it's been a long haul for him, so maybe 10 days.  That didn't happen.  Tomorrow will be two weeks.  I notice that they doubled his dose of the daily shot that is designed to drag the neutrophils out of the bone marrow into his blood.  At two weeks, well, maybe a few more days.  Three weeks at the absolute outside.  After the doctor leaves, Bob raises himself up on his elbows and cries out in frustration "They keep moving the damned goalpost."

By now it's been two months since they killed off his bone marrow, leaving him without an immune system.  The neutrophils are like little Rhoombas, going around vacuuming up trash.  That hasn't happened, so infections are setting in - fungal, viral, bacterial.  His kidneys are shutting down.

I look back at my posts from last year, to see how I was handling March.  Well - no posts between October and May.  At least this year I'm examining things.

I won't write too many details for Next Year Self.  There are things that I will never be able to forget.  But just to say one thing, a small example at things that I had to handle at the time, calmly and with equanimity, and now at a safe distance I can look and react.

When the kidneys quit, fluids build up.  They want to find a way out.  And they ooze out through the skin.  He developed huge blisters over his legs - 4,5 inches across, an inch high.  And, of course, they'd break.  They wrapped his legs in gauze, and kept absorbent pads underneath so he wouldn't soak his sheets.

One night, I woke up, realizing that there were two nurses in the room and they were trying to help him stand.  There was still some kidney function at that point, and he had to pee.  They wanted to catch it, to measure output and quality - and it's hard to use a urinal lying down.  But he was so big, and so weak, that it took both of them just to help him stand, so I grabbed the urinal to take care of that part.  (I still cringe - it's hard on a man's dignity when three women have to help him pee).  Then it happened - I felt a flood of warm liquid pouring over my bare feet.  Of course, I thought that I hadn't held the urinal correctly.  But that wasn't it.  It was the fluid pouring out of his legs.  The gauze couldn't hold it - so after that they got heavy packs from the burn wards for his legs.

And it got worse after that, and I won't write about it.   

So now it's 2022.  I've been spinning some cotton, and in getting it out found a bunch of cotton seeds.  Thought I should plant some, which leads to one of my Guilt Areas.  A Guilt Area is where there is something I know I should be doing, but just let it slide.  Last winter I cleaned up the garden quite a bit (which we hadn't had time to deal with since Hurricane Michael).  Even planted some tomatoes and peppers and cotton.  But then it got hot and nasty and I lost interest and I finally just closed the gate and never went back in.  That was about 8 months ago.

Today I tackled it.  The main thing was to dump out the pots with the dead pineapple plants.  Bob was so proud of those - it started off with discarded tops of pineapples and he put them in large pots and even harvested a few tiny pineapples, which made him so happy.  The pots were large and very heavy but I got the plants pulled out and dumped on the burn pile, and the dirt dumped in a garden bed, and the pots piled up to go to the dump.  Of course, everything was pure weeds, but I fired up the flame thrower for a couple of hours and got an amazing amount cleaned out.  So I'll put in maybe a few tomato and pepper plants and a couple of beds of cotton and maybe this year I'll even take care of them.   We'll see.