Day +778: Well, everybody hurts sometimes…

“Everybody cries. And everybody hurts sometimes.
And everybody hurts sometimes. So, hold on, hold on.”

1/16/13: Although I love winter and I love rain, today I’ll join others complaining about the weather. No question about it, forty-something (Fahrenheit) temperatures and precipitation are a bad mix. I wish it were colder and snowing or warmer and thunder-storming. This in-between stuff is cold, wet, and miserable, especially on a day when I have a lot of running around to do.

I started my day with my annual dermatology checkup. The dry spot in the middle of my back has grown larger, drier, and sorer over the past year. I’ve tried all sorts of creams and lotions including, among others, hydrocortisone, ketoconazole, and neosporin. It feels like a bad sunburn, and although small, the location is particularly uncomfortable for sitting, moving, sleeping, clothing – just about everything. It’s been looked at by all of my doctors but never diagnosed. “Oh, is that all – it doesn’t look like much of anything.” Last month, I expected my transplant team to pronounce it GvHD and at least prescribe a stronger steroid cream. Instead, I got their usual, “Hmmm… Probably nothing to do with your transplant. Doesn’t look like GvHD. Might be eczema, see your dermatologist.” At least they acknowledged seeing something there this time.

Despite what they say, I’ve done a lot of research on my own and still believe it’s most likely GvHD. Cutaneous GvHD does sometimes have an eczema like presentation. One potentially good bit of information I gleaned from my reading is that both eczema and cutaneous GvHD often respond well to tacrolimus. Interestingly, both conditions relate to T-cell activity. Today, the doctor gave me some Protopic (tacrolimus 0.03%) samples to try for the next few weeks until I see her again. She also took a biopsy to try for a more definitive diagnosis.

I was unpleasantly surprised at how much the local anaesthetic injection hurt. “OUCH!” FLINCH. This from me! I’ve endured nine bone marrow biopsies with hardly a twitch. Adding insult to injury, the biopsy hurt anyway, and the spot then was covered with an adhesive bandage that pulls at my already sore skin. Ironic how it’s the little stuff that gets to you.

I finished just in time to head to my dental appointment where I was subjected to more than an hour of painful cleaning and examination due to more plaque and staining than usual. I nearly came out of the chair at one point when Dr. F jabbed a particularly tender spot. Xerostomia (dry mouth) is taking its toll over time, aided and abetted by the tongue surgeries I had in October. I have three cavities (top right, top left, bottom left) but the dentist says my mouth and tongue look very healthy in general. I return in three weeks, coincidentally same day as dermatology again, for fillings. Good thing we picked up dental insurance this year.

After the dentist, I went to physical therapy. I couldn’t do my exercises today because of the biopsy but had the lymphatic massage on my neck. The area of my neck under my chin feels very hard and numb. I’m concerned about permanent fibrosis. The goal of the massage is to keep everything moving.

At least I got a bit of good news when I returned home – a message from my hematologist that my potassium levels are normal. One less thing to worry about and a positive end to an otherwise yucky day.

7 Comments:

  1. Well it sure stinks that you have to endure these annoying and uncomfortable issues after everything else. You certainly have had to endure far more than your share. Hoping that They figure out the skin issue, and each day puts all these issues further behind you.

  2. P.S. – REM Everybody Hurts

    Amazing how popular they were in the 90s, and now they’re all but non-existent.

  3. Love you Mausi – see you soon,
    Misch

  4. I actually knew the tag line, but since Chris already IDed it, I’ll avoid being redundant. Carl uses Protopic for his psoriasis. One thing that has worked for Bryant, when he’s had excema is a lotion called Renew, from Melelueca, a local company here in Idaho Falls. It’s spendy, about $20 for a bottle, but might be worth a try.

  5. I hope you are well!

  6. Karen,

    I’ve followed your story (before and after undergoing my own transplant for MDS) and am hoping you are doing ok as you have not posted recently. Please be totally assured that there are a lot of us out here that have gained strength and support from your sharing your struggles and your having such incredible strength to overcome them…You’re Awsome Karen!!! Even though you don’t know that we are all out here in “cyberland”…we want to thank you for all the help your (and Michael’s) postings have provided all of us and our families that struggling with these stupid bone marrow failure diseases! Thank you!!!!!!

  7. Hi Karen. I have not heard from you in a while and wondered how you are doing. Lori

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