I managed to get laundry done and keep up with the "have-to"s. In fact I am back to doing some laundry this afternoon because I really don't want to get that far behind again where I have more than two loads. Becomes overwhelming when you live in low gear. So I am aiming for one load at a time for a while. ;)
Surprise--Dagan had the day off and wanted to take me to my infusion appointment on Friday! That was a treat. He finally got to see how the whole thing goes with his old mom. :)
People were teasing him--"You're not Leah", etc. I introduced him around. We went in to get my port set up and blood drawn. Had David for that and he was saying to Dagan how strange this must all be for him or something like that...Dagan said how he was very used to hospitals...and that opened that keg of worms--LOL! Dagan and I were talking about his heart and how he wasn't supposed to live and how many pacemakers he's had and how he was one of the first people to have "angel wings" used to close the hole between his top two chambers (not called that anymore--doctor sold the patent)...and we left the room arguing about how old he was when he collapsed at the golf course driving range and ended up in a wheelchair for a few months before the angel wings were put in at University of Minnesota hospital...
We do have some strange-to-other-people mother-son conversations--with a lot of laughing.
Then we went back to the waiting room to be called to see Dr. McCune. My bloodwork looked good and he said I could make an appointment for a CTscan to be done in the three weeks before my next infusion. We discussed the possibility of IF (a big if) the tumors did disappear whether I could stop the Keytruda treatments. McCune said he would check into that with people who were more in my category. Admitted he didn't know enough about stopping treatments if there were no tumors. I like that he is open to suggestions and listens.
Then we waited there in the doctor's exam room for the next step--to be taken to the infusion center.
BUT--one set of tests hadn't come back yet on my bloodwork and another nurse came to tell me that I couldn't get my infusion. The count that was low last time to where I almost couldn't get it, if you recall. Well, this time it was even lower. This has something to do with the ability to fight off infection. Not the actual white blood cell count but something else.
Anyways, it is a good thing I had that feeling I should be in quarantine the last month or so and have been extra careful. They don't want me catching anything--bad cold or whatever. I'd have a hard time fighting it off.
Anyways, the nurse (I am so bad at names but I have had her many times and she's a real sweetie--Kirsten maybe?) asked Dagan if he'd like a tour of the infusion center since I wouldn't be using it after all? Sure! So she brought us back and Dagan got treated like a rock star! Was so funny! All the big grins and welcomes! Turns out someone said something to him about his heart--so David had filled everybody in apparently. ROFL! It was really sweet and funny, too.
After all, he truly IS one of those "miracle babies" all grown up and they still don't know why he has done so well. Studying him now, actually. When he was three months old and we got the diagnosis any kids with a similar series of defects usually died before they were two--most way before--and there was only one girl alive who was five who lived in France. (I often wonder what happened to her.) His heart was already three times the size and pushing into his lungs--and he had the tail ends of pneumonia. They sent him home to be with me for a while--a day, a week...possibly a month.
The next time he was in the hospital he was 2 1/2!
His patched and re-patched up heart is still going strong and is totally and completely embedded in mine. :)
Anyways, now I have to go back this Friday for bloodwork...and hopefully will be able to have an infusion. No doctor visit this week. Will just be a yes or no from the bloodwork.
I have a tentative CTscan appointment on Monday the 9th of May. Supposed to have a scan after my next infusion but I think I should have it regardless, of course. If all goes well I will be then back on the every three week infusions. All up in the air right now.
Dagan came in afterwards and did the tasks (trash, vacuuming, getting high up stuff). We sat and chatted a bit--with our masks on. Despite the bad news...it was just a wonderful day. Still makes me smile to remember how the staff greeted Dagan like they did. Even people I have had no contact with at all--LOL!
We had rain--and that night we even had thunderstorms.
Been chilly and snowing and raining and melting.