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...
15 comments:
I am so sorry you are having such a hard time. I am praying for you. I know you have more pressing matters in your life but I am so sad lost touch with Karl (Intense Guy) Iggy. I had sent a few cards his way and no response. So I pray, he was such a delightful person, he found a photo of the semi pro baseball team my dad was on way before I was born. It was such a thoughtful thing for someone to do. I loved his knowledge of history. Sigh...hard to lose those good blogging buddies.
Take care and it sounds as though you have a good support system. we had so many rabbits but not lately. I know they love the cold hate the heat but they must laying low somewhere. I feel bad for all the birds and other critters in this frozen tundra we are in and have been for months on end.
Take care and know you are prayed for and thought about and always cherishing the kind heart you have always showed. God Bless You.
Good luck tomorrow! I hope it gets all worked out and you get some relief.
Gosh, you are having a hard time of it, but the future looks bright, new doc and all. I hope you get some medicine for that rash, which sounds a lot like shingles to me. Sending you lots of love and prayers, dear friend.
Hi Rita. So sorry to hear that you are having such a rough time. I am sure glad you were able to get in with the new doctor so quickly. Hope is always a good thing to have. You will be in my prayers tonight. Be sure to update us on what is going on when you know more. Sending love and prayer to you.
As a total non-professional with no medical training of any kind, that rash sounds an awful lot like shingles to me, which is all you need considering everything else yo are dealing with! Good luck as your diagnoses and treatments proceed.
Rita, this post had the good news about a new doctor, but then the not so good news about the rash. Hopefully, you can get the CT scan and also something to relieve the rash and blisters. We had the shingles vaccine, ironically both the old and the new ones, and hopefully its not shat you are dealing with as I have read of the discomforts. We will be getting the bitter cold temps by the end of this week, but no snow or rain is forecast, which means no freezing on roads or walkways. Hope you will be able to get some relief and rest this week, my friend.
Having just had Shingles in September(...and beyond), I certainly can identify with your pain from that kind of rash. Regular pain meds simply don't touch it. Hope that you can get something to ease your discomfort and that you are able to get the other tests you need for the Friday appointment. Just glad you have someone like Nikki at Sanford who will listen to your concerns and take them seriously. Sending good thoughts your way.
Sounds like the dreaded Shingles to me. The sooner you can be seen with the rash the faster they can give you meds to help, you should go to urgent care. Shingles are miserable...I had the first shots and then the new and improved series...my Dad had shingles often...they are the pits. Hope you get all straightened out and I am glad you are being seen at Sanford:)
I'm happy to hear things are moving forward with your new doctor. That rash sounds awful :( I hope it clears up soon, and I hope it doesn't keep you from your appointments. I know you're anxious to get news from the test results and move forward.
We have an ice storm warning here, but temps in the 30s for highs so nothing at all anywhere near the frigid temps y'all get. Yikes!
Oh dear, you do have more than your share of trial and tribs. I do hope that your new doc’s name doesn’t hold true. 🤓
A mixed bag this week but that's ok that's life
I'm so glad you have your appointment and it seems like they are right on the ball, so ell done! I've had shingles (on my head) and Rick has around the middle and we'll both join you in great sympathy for the pain and discomfort. Hopefully hey can give you the antiviral and early enough that it will help alleviate the pain sooner. I'd recommend urgent care and go ASAP.
Interesting, because when I first read that I thought "Oh, that's shingles." :( I hope you get better regardless of what it is, it's always just one more thing to add to the aggravation.
I thought of you yesterday when I saw we were going to have the coldest day in 80 years on Saturday at -27 (wind chill) in the AM. It's since updated to 0, which I still don't like. Fingers crossed it will be a balmy 10 degrees by the time I actually have to deliver mail in it... and that the heat in my mail truck finally gets fixed. I really don't know how you do the extreme cold. I hate living where the air hurts my face.
I hope all goes well with the new doctor, Rita. Hopefully the rash will clear with the right medication. Thinking of you. xx
Well, by now you've already been to your appointments. I hope everything went well and the rash is starting to diminish.
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