Wednesday, September 17, 2008

Mouth sores and me

To all of my dear friends who have patiently been trying to get in touch with me, I'm sorry. I'm not avoiding you on purpose or ignoring you all together. I've developed a raging case of mucocitis, which means that the inside lining of my mouth and throat are sloughing away. Not to put too fine a point on it, my gums, tongue, and throat are covered in bloody sores. It hurts to talk. It hurts a lot. I promise to call as soon as I'm able to. Heather, you're at the top of the list.

The mucocitis occurred the same day that Ike hit, so I know it was nerve wracking for those trying to check in on me.

There are days that I can manage to have a bite of something, but more often than not, I can't even manage a sip of water. Dr. Andersson put me on a constant dilaudid drip to control the pain. The only problem is that dilaudid makes me sick. I constantly throw up when it's administered. Because I couldn't hold any of my pills down, my meds were all switched to IV.

When Dr. Andersson realized how badly dilaudid made me feel, he switched me over to something else. A new transplant doctor started rounding on Monday and felt that the new drug wasn't helping, so he switched me back to a constant drip of dilaudid. This is supplemented by a 24 hour drip of zofran to help with the nausea. When the zofran doesn't cut it I can ask for a benadryl/phenergan cocktail, or IV Ativan.

I constantly feel off balance and sedated, which Dr. Andreeff finds preferable to seeing me deal with the constant and excruciating pain. During the day I'm either napping or holding as still as I can. The nausea flares up if I move my head even just a little.

As soon as my counts begin to increase, the sores should resolve within the week. At least, that's what the doctor thinks. I try to eat a little something every day to no avail. It hurts so much to swallow that I end up gagging and/or throwing up. The team has assured me that I will get better and I believe them. I just really want a nice cold glass of water.

That's about all that I have to report.


PJ said...

Oh, Ann, I'm so sorry you're going through this. You are an incredible trooper. Know that I'm thinking of you all the time and hoping those new blood cells of yours multiply and start doing their job. xoxoxo

Ronni Gordon said...

Mouth sores are definitely the pits. As I wrote on my comment to Chris' last post, I had them really badly, coupled with an infection of the gut, and I went on TPN for a little while. As promised, everything resolved when the counts went up. As soon as yours come up you'll feel much better too!

Bonnie said...

Did you sing the ever popular "rain rain go away" as a child? Well, the modern version goes like this:
Pain, pain, go away,
Hit the road or there'll be heck to pay!!
Or something like that. I'm singing and praying for those counts to rise, and hoping Chris is there with you.

Susan C said...

Oh, Ann, those sores and the nausea sound so miserable. I think I would opt for heavy sedation until it all cleared up. : )

Anonymous said...

Ann, I am sorry you are dealing with all of this! I will be hoping that you get that cold glass of water soon enough. I know when those new cells kick in the sores will go away!
Keep fighting!!

Anonymous said...

Just remember Ann, this is the worst this will be and it will be all uphill from here. I wish they could knock you unconscious. Throwing up must hurt too. But real soon this will stop. One minute at a time, girl. Not even one day. You are brave and strong and you have Chris back with you. Always on my mind, Judy Lindahl (julindy from LLS) and husband John

Nancy said...

Dear Ann, I've been thinking of you constantly. I'm hoping the new cells will engraft and start making white cells to knock down those throat & mouth lesions. I'm so sorry you are going through this. I'm sure it's a big relief to both you and Chris to be re-united. Just enjoy the sedation until you start feeling better. TPN isn't that bad. Just rest my dear... don't try and talk and don't try and post to your blog unless you feel good enough. I'm sure Chris will update us!!! love you lots.... nancy

Jim said...


I remember the mouth sores (Dori's, our friend Chuck's and others). They are the pits. The good news is your doctor is right ... they will go away and cold water and food will be part of your world soon. Prayers for comfort and love from Tennessee ... Jim