My skin is itchy dry (especially, and most frustratingly, my boobs), which results in a scratchfest every night and a paranoid GVHD "scare" moment the other night (I thought it was a sunburny GVHD rash but the nurse told me today that it was irritated red, dry skin. GVHD looks like hives apparently), my nose is dry, my eyes are dry, my.......is dry. Dry. Dry. Dry. And I've been GULPING down water as per doctor's orders. No help, except that at least I'm not thirsty on top of it. According to Dr. deLima today, this is something that happens after transplant to many patients and they aren't sure why. The good news is that it won't last forever and as long as my numbers stay "beautiful" the scratching can't cause any problems like infection, and there are products (we have the technology!!) to help. As for the itching that happens with the dryness, P and I had a 'duh' moment when they asked if we had tried Benedryl yet...uhm, no. Derp. Will try tonight:) They also said I can use saline nose spray and eye drops (all of which I was paranoid to use until they gave the go-ahead because I'm a glutton for punishment evidently...and have read way too many CNN reports of freak eye and sinus infections), so P and I will be stopping at CVS after clinic to clean them out of all hydrating products.
Today was the first time I've seen Dr. de Lima since I was in the hospital and he seemed very very pleased with my progress. In a little under 2 weeks, on day 30 post-transplant, I'll have a bone marrow biopsy which will show how much of my marrow is donor cells (he thinks 90%, which is CRAZY high) and also if there is any evidence of CML left. I would be lying through my teeth (fingers?) if I said I wasn't a little freaked about this biopsy. If there is evidence of CML then I'll move on to have a few rounds of low-dose chemo to try to beat those little bastards out of me, which is a good thing that this can be available, but it would keep me in Houston until at least January. BUMMER. Instead of spending the next two-ish weeks freaking out about this, I'm going to concentrate on the fact that I feel freakishly good (if a bit DRY) for someone not even three weeks post major medical procedure. My numbers have been so great in fact that they're giving me tomorrow off from clinic and sending a home infusion nurse out so I can learn to do my magnesium and hydration via pump at the apartment. So flipping cool. Maybe I'll make pancakes for breakfast tomorrow.....hmmm......
A quick update on the Justin.tv clusterfuck: there is apparently something wrong with Justin.tv and I (and many of you who have been trying to follow it) am just a bit tired of making faces silently into a camera, so I created a new account at Ustream which appears to work really well. If you created a username and 'followed' me on Justin.tv (THANK YOU!!!), I suggest canceling that account (so they won't send you a billion e-mails) and you can move on over to Ustream- they call it a 'crowd'. Here is a link to my channel, to subscribe click "join crowd" (it's free of charge) and follow the instructions:
When I broadcast I'll post a message and link on facebook, which will be again tonight at 10 pm Philly time(9pm Central).
Thank you dear friends and family for your love and support. Hearing from you online and over the phone and through the mail has provided such comfort. Your generous gifts are humbling and have brought many smiles:) To say 'thank you' can't even begin to cut it.
So, so, so much LOVE!