Friday, September 17, 2010

Is that GVHD on your boobs or are you just happy to see me?

It's GVHD on my boobs.

GVHD (graft-versus-host disease) is a very common occurrence after allogenic transplant where the donor cells recognize the host (my body) as a foreign object and go into attack mode. It can effect any part of your body, though it typically shows up on your skin or your GI tract first. Before transplant, all of my doctors (and rightly so) worked really hard to scare the shit out of me about GVHD, oh boy did the succeed in that too. If left untreated, it can get very nasty very quickly, potentially life threateningly so. There are two kinds of GVHD based on when they show up post-transplant: acute (within the first 100 days) and chronic (after the first 100 days).

In the hospital, I was told to watch the palms of my hands and my feet for the first signs of a 'sunburn-like' rash and to have P check my back every night for the same. Well, being the ever compliant patient, I did all of the above, however, where has my GVHD shown up? On my friggin' boobs and tummy (well, very lightly everywhere else too, mostly my forearms and lower back). Does it look like a sunburn? Nope. It's kind of bumpy, very rash like and itches like a motherfucker. Ladies, if you have ever been to a tanning bed and not put on sufficient sun protection (not that I've ever done this...um) and you get that itchy slightly burny blotchy rash, that's what this is like. You have to be standing quite close to me to actually see it, otherwise it sort of looks like I just have a healthy glow goin'. The Advanced Practice Nurse (this is a correction from one of my other posts, apparently she's not a nurse practitioner...whatevs) and PharmD prescribed this gloppy steroid cream and Aquaphor (which is like putting Vaseline all over your body, gross) and have assured me that this will make it go away. Weird. They keep saying that this is neither a good thing or a bad thing, just a thing that happens. Good thing it's an easily taken care of thing:) Wait, let me type 'thing' one more time. THING.

Aside from this mild GVHD, my numbers have been looking pretty stellar (and the muscle relaxers TOTALLY HELPED, BOOYA!) so I have been given today (Friday) and the rest of the weekend off from clinic. So, here I sit a bloggin' and infusin' at the same time in one of the big comfy recliners.

A little birdy told me that the weather is gorgeous in Philly right now so, dear friends, I hope you enjoy a gorgeous weekend! Thank you so much for your steadfast support and love, it is humbling and sustaining. Missing all of you so, so much.

Much love.

6 comments:

  1. So was this the skin itchiness and discomfort you told me about when we talked earlier in the week? That you thought Gold Bond would help? If so, I'm glad it's been correctly identified so you can manage it. Aquafor is *exactly* like vaseline, ok on small areas, but all over? Hope everything clears up quickly so you don't have slime yourself ongoing. Enjoy the weekend & tell your Dad I said, Hi! Love, Chris

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  2. love the title of the post....hahaha! but sorry you're experiencing this, damn it. well, the cramps are under control, what more can we want. (i could want NO SIDE EFFECTS.) Hey, is your dad coming to town this weekend? NICE! enjoy that visit, so nice! did i tell you how much i miss you at work? waiting in line for the bathroom by krista's room? ... better with you there. talk to ya.

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  3. just updated myself from the week (sorry in advance for the long paragraph) ... and wow ... you had quite a week! first and foremost ... i'm sorry about the pain you had to endure. i'm glad you spoke up and continue to do so. you are SO right with what you wrote ... being kind and being your own advocate goes A LONG way. ugh ... GVHD ... it is a hurdle you will soar over (no (incorrect spelling) pun intended! ha!) your sense of humor is still with you, which is amazing! you have CUPCAKES which is even more amazing (ps ... do you like cream cheese icing on carrot cake???)! and i can guarantee you are still beautiful YOU! i started thinking of some post BMT things and wondered if you were planning to try a frosty beverage any time soon ... if you do and are allowed to ... beware ... some GVHD meds cause rashes when mixed with alcohol. ;) even if it is just a tiny sip to toast your brother who got engaged 3 months post BMT (just saying!)! ok ... i will stop taking up all this space on your post a comment page (sorry everyone)! i will DEFINITELY be in touch tomorrow! ;) xoxoxoxoxoxoxoxoxoxo

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  4. GVHD sounds dreadful. I'm sorry you have it. Suddenly, my complaint about Meet the Teacher Night seems lame...
    Namaste.

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  5. Laura - this is ... Kathi ... lets see we'd be 2nd cousins, I think..... from Milwaukee , WI... my mom KIVA was your GrandPa Nick's sister. You my dear TRULY have the Romanian smart ass gene passed down to you ! I LUV your writing - kinda like listening to my sisters & I talk !!! you and your family are in my thoughts and prayers. God speed to all ! And yes butter cream and cake are the best partners !! The best medicine is a fantastic sense of humour and you certainly have mastered that !! You'll be back to "normal" in no time ! Cheers - I'll have vodkas for you - xoxo kat

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