Wednesday, April 1, 2009

Well, it happened. I have been laid low by whatever was infesting my niece. It all started early this afternoon with a bit of congestion and sinus pressure. I attributed my discomfort to the front that moved in over night. My post nasal drip steadily got worse during the day and I began to feel nauseated. By the time dinner rolled around, I was pretty sure food would be the enemy.

I managed to eat half of a sandwich and a handful of chips before the nausea really dug its claws in. Chris suggested that I take a Zofran, which I did. I managed to eat two popsicles after this and thought that I was really in the clear. Not so. I ended up vomiting about 15 minutes later.

I did feel immensely better after this little episode. I plan on emailing my doctor and waiting on further instructions. I haven't spiked a fever and my temperature has been consistent all day. I already have an appointment in Houston on Monday, so I suspect that the team will keep me in a holding pattern unless my symptoms get worse.

Tuesday, March 31, 2009

Just for a laugh.


I think my niece is viral, yet again. She was up off and on during the night throwing up, so guess where I am right now. Back in quarantine. This is definitely the one time that I do not want to catch what she has. I've spent so much time vomiting over the last two years, I could do without any more episodes, thank you very much.

Monday, March 30, 2009

Dinner was a little bit of a disappointment yesterday. I didn't have the right flour for the naan, but forged ahead regardless. The texture was wrong and no matter what I tried, I couldn't get the oven temperature right. The chicken chaat was really tart. I followed the recipe to the letter, but made the mistake of not tasting it along the way. I forgot how tart tamarind can be and when you add lemon juice to that, you're just asking for trouble. Next time, I'd cut the lemon juice down by at least half, or maybe just substitute water. We ended up picking up naan at one of the local Indian restaurants in town. Live and learn.

I've been off steroids for a little over two weeks now, give or take. Time tends to be a little compressed for me, since I stopped paying attention to certain things. I think I'm suffering from a new manifestation of skin GvHD. I itch all over sporadically throughout the day. There is no rhyme or reason to it. It's a sensation buried deep in the skin that no scratch can satisfy. The worst is when the bottoms of my toes start to itch. It's tortuous and the only thing I can do is wait for it to stop of it's own volition. I keep applying moisturizer, which helps to some degree. I foresee some sort of steroid cream being prescribed in the near future.

My joints continue to be flexible and for that I am grateful. I definitely do not want to go back on oral steroids. At the moment, I look less like a chipmunk and more like a squirrel. I consider this an improvement and am hopeful that my face is almost normal for my next MDA visit. It's not about vanity. My doctor thinks the whole process should be happening faster than it is and mentioned prescribing some more meds to speed everything along. I'd rather not have any more pills to keep up with.

I'm going to take a break from playing international gourmet this week. I'm thinking that it's going to be mostly salads for dinner, with the occasional baked sweet potato. If Chris or Dixie want to try their hand at something, they're more than welcome to.

Sunday, March 29, 2009

Chris and I are laying low and trying to stay out of trouble. The weather has been horribly wet this week. Of course this weekend has been gloriously clear and sunny. I even volunteered to run errands with Chris, just so I could be outside. My version of outside is sitting in a shady car while Chris does groceries and picks up odds and ends. I'll take what I can get.

We're attempting our first batch of naan tonight. I'm really hopeful. We found a recipe for chicken chaat that comes from our favorite Indian restaurant in Houston. The salad is marinating in the fridge and I'm anticipating some delicious flat bread sammies.

Life is plugging along at a nice pace. Living with a teenager keeps things dynamic. Chris and I are tentatively making plans for a house. This will be attempt number three. It seems that everytime we make an offer, something happens. First it was PTLD, then a relapse. We've got our eye on a few places, but we're being cautious. There's nothing that we just love, and houses go on and off the market, so I don't feel rushed. I know when it happens, I'll be happy to have my stuff out of storage and I'm sure Dixie will be relieved to have her house back.

Hope everyone has enjoyed their weekend. I anticipate things being quiet around here for another week.

Tuesday, March 24, 2009

Octavia Butler often wrote of "Other" as a state of being. That alien sense of not belonging, but not knowing where to go. I couldn't fully appreciate her writing as a student years ago, but now I'm starting to believe that I have some inkling of what she was alluding to.

With the first transplant, I belonged to an exclusive group of medical adventurers setting out to get saved. When I relapsed, I jumped ship to be in a more inclusive, if unenviable, group of people desperate for some hope. Now that I've had transplant number two, I live in a much smaller world inhabited by some very remarkable people.

I never really felt isolated the first time around. I proudly walked around with my head naked and the lower half of my face covered by a surgical mask. Most days, it never occurred to me to cover my baldness since it was so normal for me. I gave up business casual for lounge wear and pajamas. In my new world, track suits were de rigeur. I never felt alien because I was surrounded by people just like myself.

Since my second transplant, I've become a little more apprehensive. I suspect it has something to do with the steroids altering my appearance. I no longer recognize my face in the mirror and often wonder at people's reactions upon first seeing me. Last week, I put on make-up for the first time in 8 months. I hated the way I looked. It was so foreign and fussy. I had just strayed out of my comfort zone.

I have let cancer dance me into a corner that I felt "safe" in. No more. Now that I'm off of the dreaded steroids, my face is very slowly deflating. I can almost make out cheek bones. I'm starting to feel more like myself and less like biting someone's head off. Thanks to the experiences of the last two years, I'll always feel a little "alien", and that's really quite alright.

Wednesday, March 18, 2009

Tonight we learned that our friend Michelle has relapsed. She had a cord blood transplant a little over 100 days ago. It was her only option since there were no matched unrelated donors that were a close enough match to her on the registry. Please send healing thoughts or prayers or both her way.