Going to post early because I have no idea what will be going on tomorrow but something will.
The good news this last week is that Leah called Sanford Monday and I have an appointment for a checkup with a new regular doctor in May.
Sandford didn't waste any time. I got a call from a nurse the next morning and we had a long chat. She thought I'd be best off with a doctor who dealt with the bladder, prostrate, liver end of things. (I had thought I'd like a lady but the two lady oncologists specialized in breast cancer.) She was really nice and listened to me. I couldn't remember the name of the mouth thing I have now and she knew it right off--mucositis. I picked a young doctor I remembered had a nice face--Dr. Failing. I got a call back that I had an appointment for Friday 3rd with the new oncologist Dr. Failing.
Keanna came to clean on Tuesday. I was having pain in my side for a couple of days.
Wednesday Nicki called me back already because Dr. Failing wanted me to have bloodwork and my CT Scan before he sees me. I needed to have the bloodwork done before the scan because they need to know my kidneys are okay for the contrast they use. I could go into the lab whenever. She called me back and got the CT Scan for Monday afternoon. So, I planned to get the lab work done Friday, CT scan Monday, and new doctor on Friday.
Thursday I started to get a rash across my midsection and left side. I figured this was yet another one of the Keytruda side effects--the Keytruda rash.
Friday afternoon Dagan ran me over to the lab and I got the bloodwork done. By that time the rash had gone around to the middle of my back and was looking worse. By that night the rash had formed blisters, become more painful, and I was running a low temp.
Friday night, Saturday, and so far Sunday all I have done was sleep off and on round the clock--I'd doze off and sleep maybe an hour, wake up in pain, fall asleep in another hour or two for another hour or two...repeat. I finally called Leah this afternoon.
I googled Ketruda rash and shingles. They seem to be about the same, but I'm not positive if the Keytruda rash is also contagious. Not sure what to do about the CTscan tomorrow. I plan to call tomorrow morning (Nicki gave me her number) to see what they think. I wouldn't want to give this to anybody--it is awful! According to everything I've read online steroids are the thing I'd need for this new rash, too. But I doubt I can get a prescription without seeing somebody first. Who knows, though.
So--tomorrow--I might be getting a CT scan, I might be sent to the walk-in clinic to be seen and get steroids, or if I was lucky they could prescribe me some and Leah could just pick them up for me and I wouldn't have to go anywhere. (Getting dressed sounds like a painful task.) I might have to do both the walk-in clinic and the CT scan...who knows? Regardless--something will be happening. So, I am blogging now.
I will probably be asleep again shortly.
Let's just say I really, really wanted to get the CT scan tomorrow so I would know if the tumors are gone. Especially now that it is looking like I can't take Keytruda anymore, you know? Not that there aren't other types of immunotherapy out there (found out researching online) but it would take a long time for my body to recover enough to mess with it any further, you know? It feels like my body has struggled for this last year to try not to give in to the side effects...but it is definitely telling me enough is enough.
I am exhausted.
But I am SOOOO glad to be switching over to Sanford!! Just talking to Nicki alone gave me such hope. To have someone believe me and listen to what I had to say. To have someone to talk to who didn't take offense to my searching for information online.
So, something will be done tomorrow. I am hoping to get on steroids (even though I don't like them--lol!). Seems like everywhere I found online on how to deal with side effects--from the diarrhea, to the mucositis, to the rash--they said steroids. Same remedy if it was shingles, BTW. (I had the first shingles shot but not the second one.)\
So, things are moving along rapidly with the Sanford shift (hurray!)...but I now have another new awful issue to deal with. Hopefully I will have better news next week.
Meanwhile...I took this picture out of the bedroom window of the small birds at dusk in the tree...