Wednesday, January 21, 2009

Queen of Rashes stays true to form

Yesterday and the day before I was just sitting around minding my own business when I broke out in a mysterious rash. It wasn’t a drug or transfusion reaction because I hadn’t gotten any blood products and I wasn’t on any new antibiotics.

I watched as the hives popped up and then melded together, blossoming into bright red, itchy patches. The Queen of Rashes does it again. I’ve gotten so much Benadryl since then that I have lost track. I continued to get it today, and so far, no rash.

I also got a painful sore in my mouth. It’s not technically a mouth sore, but it’s red and inflamed. Yesterday I went downstairs to the dentist, as part of my pre-transplant workup. While I was there, I asked him to look at the thing in my mouth. He poked and prodded and announced that it would go away. Today it hurt so much that I could barely eat, so I broke down and took some Oxycodone, and then took another dose later. Needless to say, I spent much of today pretty zonked.

The inauguration kept me busy most of the day yesterday. I stayed in bed for a long time and watched the events starting around 9 a.m. I was transfixed. And although I try to avoid cliches, I have to say that much of it sent shivers down my spine. I felt a little decadent staying in bed so long, but then I reminded myself that I am in the hospital and I’m allowed to lie down.

I’ve been trying to do my bed and chair yoga and stretches. During the early part of my “visit,” I felt so sick and disheartened that I couldn’t even think of exercising, except for walking. But as I’ve begun to feel more like myself, the motivation is returning. And after I’m stretched out and have done the poses that I can do without hurting myself, I feel pretty good.

I assume that in a few days I’ll leave the holding pattern and start receiving my pre-transplant conditioning chemotherapy. I think they’re going to give me my own special concoction, but I’m not sure what that will be. I hope I don't lose my hair!

It's almost 10:30 and I was about to get into bed with a book, but I was just called down to MRI for a repeat look at my brain. They do most of the emergencies during the day and the in-patient population at night. My nurse said I was lucky, because sometimes people get called in the wee hours. Oh well, at least I just took my Ativan, and I might even sleep through it.

11 comments:

Anonymous said...

Ronni - I just found your blog via Paul Levy (Beth Israel/Running a Hospital blog) and wanted to let you know that I will keep you in my prayers. I lost my mother to AML in '06. She too was a mother of 3 and tennis player and cared for by Doctors Wadleigh and Alyea, but unlike you she was never well enough to have a transplant or achieve remission. I will be praying that you have the good fortune to beat this and share many happy years with your kids. Keep running - I'll be (one of many, I imagine) cheering from the sidelines. Best wishes, Andrea

Howard said...

Hope you're back from the MRI and feeling good, Queen of rashes.

Clearly there's nothing lurking in your brain but fertile fields of dreams....

Susan C said...

I wonder what the queen of rashes would wear on her tiara. (As you know, I had dog biscuits on mine.)

Great to hear that you're continuing to keep fit and flexible.

susiegb said...

Keep at the yoga Ronnie - it will make you feel better, both physically and mentally!

We were all transfixed by the inauguration over here too! I didn't get up in the middle of the night to watch it, but I did turn on the TV at breakfast - something I never normally do! And then watched live feeds and websites during the day.

I'm going away for 3-4 days tomorrow (it's Australia Day long weekend, and I'm taking an extra day) but will hope to hear you are no longer queen of any rashes when I get back!

Nancy said...

Hi Ronni, Let's hope for no more rashes! I also became allergic to so many things including TPN (IV nutrition) and Mepron, which caused a horrible, near-fatal reaction on the third day of taking it. Make sure they keep an eye on you for further hives or anaphylactic reactions.

Sounds like things are moving ahead and on-schedule for your transplant. You will be in our prayers. Take Care. love, nancy

CLL Spouse said...

Your walking and yoga impresses me! I continue to follow your posts. Press on. Gently, of course. (I say this as one who sometimes presses a little too hard.)

Anonymous said...

DId they ever figure out what caused the rash? I am sure it is so painful ontop of everything else you are dealing with!

Thinking of you!!
xo=-Lea

Wendy S. Harpham, MD said...

Dear Ronni,
It's great how you are teaching people to modulate your exercise depending on your condition for the day, always trying to do enough without doing too much.

With hope from one of your cheerleaders, Wendy

Rooster said...

Ronnie,

I have been so sick lately I had to go back a few to catch up. Keep it up, I hope they van figure your rashes it, I gedt the itches with Oxycodone but after 3 days in a row of Rigors & high grade fevers the itiching is nothing compared to that pain. I remember a while back you talked about getting Rigors after a Platelet infusion so I have found your blog very useful as I go through my AML Fight as well.

Thank you for all that you share,
Sandi

pam said...

Dearest Ronni,

just realized as i was walking in the snow that your nickname for the duo with Manda was Runni ...

how fitting...and what a super omen...

Anonymous said...

Ronni

My son is 25 years old, just met a lovely girl about a year ago. Making plans.
One more year left to become a Graphic Designer. Had to drop out-
he has AML and is scheduled for a transplant in the next month. I am so scared because he developed a very bad infection after the 2nd round.
I've read some of your blog and I
just want to tell you that I have seen such bravery in my son and I see it in your writing as well.
Keep fighting. I'll keep reading.