5 August

1. Proximity to good healthcare
2. A decent clean laundromat
3. The ability to do virtually everything unassisted

Yeah, about that laundromat…

Wednesday morning I had separated our laundry and loaded our old washer with clothes and detergent. I selected the type of wash, pushed the Start button, and… nothing. Just a few electronic clicks. I selected another type of wash and pushed the button again. Still crickets. After the third failed try with another wash setting I packed it in, unloaded the clothes, bundled everything up into baskets, grabbed the detergent and some loose change, and headed to the laundromat after looking up some local options online. At least the place I found wasn’t too far away and it was, as laundromats go, relatively nice: clean, lots of machines in good condition, a tidy bathroom, ATM machine, and vending machines for snacks and drinks. I called an appliance repair company yesterday and the man I spoke with told me that due to the age of our washer and dryer, it would probably be a better idea to just chuck in the towel and buy a new set, due to discontinuation of replacement parts. Ugh. This is NOT needed right now but it’s our current reality so we’re just going to have to muddle through somehow.

Right at this moment I’m sitting in Dr. Santiago’s waiting room trying to build a bullet-proof case for pulling the damn PICC line out of my arm. I hope to at least get the dressing changed by the pros in the infusion room but we’ll see. Oh, I forgot to mention: I had just gotten to the laundromat on Wednesday and had begun to load the washers when I received a text from one of my home healthcare nurses, saying that she was on the way to my house and would be there in about a half hour. I pulled everything out of the washers, reloaded the car and dashed home, only to receive a phone call from Sylvia, who told me that she made a scheduling mistake and wouldn’t be coming by until around 4pm. Hell, I didn’t even know she was coming by on Wednesday to begin with. I had been expecting someone on Monday, which is normal “dressing change day”, but after no phone call or texts, I figured I could probably wait until Friday providing I kept the dressing on my arm clean and dry. Since I don’t make a habit of rolling in mud I figured this wouldn’t be a problem. Well, now the dressing is looking decidedly tired and while the line insertion site still looks good, something needs to be done with it. The line has been pulled out by a good 1 1/2 inches because of two awkward dressing changes and I’m going to use this as a bargaining chip, along with the fact that the bandage adhesive is causing an allergic reaction on my skin. Fun, right? Oy.

All this news seems dark and gloomy but it’s really just transitory, a few speed bumps in the road. Yes, it’s frustrating, but it’s all fixable.

So here I am, still with the stupid PICC line, still with the old dressing. Getting Dr. Santiago to give a written okay for my dentist to clean my teeth – a necessity given that I’m immunocompromised and my dentist requested a written approval – turned into more of a nuisance than I’d banked on and so I didn’t even bring up the subject. When he walked in to the exam room he chirped if I was ready for Sunday. Sunday? What’s happening on Sunday? Turns out that he was expecting me to return to the hospital on Sunday for Blincyto Part II and I was completely in the dark about that. I told him that I’ve got dental appointments, both for myself and for Basil, scheduled for next Tuesday and both appointments have been rescheduled twice and can’t be pushed any more. Welp, that threw a bit of a wrench into the works. It’s not like it’s the end of the world to push the new infusion start date back a few days but, geez… I saw another flash of that Caribbean Hispanic attitude again. I don’t think it was entirely directed at me but holy moly, that man can be mercurial!

When I got home from San Antonio I immediately called Option Health, the home medical supply company, to get another couple of dressing change kits delivered. They should arrive tomorrow before noon and then Sylvia, the nurse, will come by on Sunday to swap out the dressing. The lady I spoke to at Option Health told me she would send another type of bandage that’s kinder to sensitive skin, so hopefully that will solve the skin reaction issues I’ve been having. Fingers crossed!