GvHD

I've been spending more time out and about recently and I've noticed that my skin GvHD has picked up. When I say out and about, I mean sitting in the car while errands get run. Trust me, it's better than being cooped up in a hospital room and the scenery is constantly evolving.

The skin GvHD has been manifesting as dry, scaly patches on random parts of my body. No amount of moisturizing seems to have any effect other than maintaining some kind of stasis. I've had to take ativan more than once to help me sleep since the itching has started. It's not a habit that I want to get in to and I do my best to sleep on my own on the nights when the itching isn't so bad. There are actually some nights when I'm not suffering from itching at all and am able to sleep unaided. Of course, I usually wake up in the middle of the night scratching like a fiend.

The newest phenomenon that I've noticed involves being exposed to direct sunlight. As soon as sunlight hits any exposed skin, I start to get a prickly, stinging sensation on the area. It's not painful like a wasp sting, but rather more like a gnat bite, except it feels like it's happening from the inside in little clusters. If I move the exposed area out of the sun, it stops almost immediately.

I'll talk to my transplant doctor about it in July when I see her next. Although I love my local oncologist to pieces, he'll be the first to say that GvHD is not his area of expertise and then he'll ask me what my transplant doctor has to say about it. At the moment, I feel like it's a very minor thing and it doesn't interfere with my quality of life, so I'll let it ride.

Life is still moving along at its usual clip and the house purchase is still giving me heartburn. I know everyone is doing everything they can to make it happen in a timely fashion, but I feel like our definitions of "timely" don't quite gel. We've offered to rent the house from the seller while the fine print gets sorted and she has declined. C'est la vie.

It occurred to me last night, as I lay waiting for sleep, that my personal housing crisis has been dominating my thoughts. Yes, there have been the occasional relapse thoughts peppered in to the mix, but for the most part, I've been focusing on this house.

Here's the silver lining I've managed to rip from the cloud of my discontent: If I'm worrying more about trivial, day to day things, and not about leukemia, then I must be marching a little closer to normal.

I also have to say that my warm, fuzzy feelings for Jamie, our mortgage broker have resumed. I know she's bending every which way to pull this off and I hope she knows how much we appreciate her efforts and tenacity.

Karma

If you subscribe to a belief in karma, then you'd have to believe that I did some fairly rotten things in a past life to have to work through two bouts of leukemia, two transplants, and this house mess.

I'm not going to get into any details because I feel like if I start talking about it, I won't stop. I'm just going to give it up to the universe and see what comes back.

If anyone's looking for me, they can find me squashed under an enormous pair of shoes.

Shadows and such

It turns out the shadow looming over me the other day is shaped like a shoe. The underwriters of the home loan are being very particular about every last detail. Gone are the days of throwing money at sub prime candidates. Never mind that Chris has near perfect credit. The underwriters need an accounting of the gaps in Chris's job history over the last two years. I wonder how professional it would be to refer them to the blog? They now need further proof that Chris has worked for the companies listed as previous employers. It doesn't matter that they have copies of his pay stubs. We'll have to wait while forms are faxed to former employers and wait a little longer while former employers fill out the forms on their own schedules. There are forms that I must now fill out since I'm contributing to the down payment. I'll also have to provide copies of financial paperwork obtained from the bank once my check clears his account. I've bought a house before. It's generally not this tedious.

Our lending liaison is now saying that we'll need more time to get all of this done. She's saying things like "contract extension". I no longer have warm and fuzzy feelings toward her. Chris and I are up against a hard deadline with the closing date we chose and we're making a herculean effort to be sure that everything goes off on time. Unfortunately, we're dealing with second and third parties that could care less what the current situation is. Welcome to life.

If you couldn't tell, I feel about three centimeters tall in a room filled with falling dominoes.

I did see my doctor today and things haven't changed much from last month. My liver function is still elevated, which is distressing. I asked if it was still a result of medications or if my liver is just damaged from all of the chemo that I've had. He said it could be either. I suspect that I'm headed for another liver biopsy if things remain the same. My red blood cell count is up to 3.34 M/UL, hemoglobin is 11.5 g/dL, and white blood cells are 5.9 1000/ul.

I pointedly asked my doctor if he saw anything at all to be concerned about, since we were planning on closing on a house. He said I look better every time he sees me and that I need to live my life. I would sincerely love to, but I'm feeling a little defeated by this latest setback. Ironic that I've had two transplants and more chemo than anyone should have to endure and I'm letting a handful of bureaucrats rain soiled cat litter on me.

Rashes and allergies

The rash on my face is getting smaller, but is still easily noticed. I applied a little cortisone cream to it and that seems to be keeping the itching under control. As for the rest of me, I don't think there's enough cortisone in the house to cover all of the itchy areas. I'm not displaying a rash on the rest of my body and the itchy spots come and go in random intervals and they aren't contained to any particular spot. This morning I woke myself up scratching my neck and chest. Currently, my scalp is making me a little crazy. I think the only spot that hasn't itched today is the bottom of my left foot.

Chris is concerned that the itching is increasing in frequency and wondered if I shouldn't start taking Atarax. I don't feel like the itching has increased, per se. It still comes and goes in waves and up until this weekend it alternated between being mild and intense on a day to day basis. It seems that the last two days have been filled with more intense moments. I still feel that the discomfort is manageable without drugs and like I've said before, I'd rather feel this mild variety of GvHD and know that it's in residence. I know of another patient who is constantly under attack from the "itchies", so much so that it interferes with his quality of life. He and his wife, Betsy, cope with such grace that I can't even imagine grousing about my small discomfort.

The scaly, dry patch on my forehead is about the size of a nickel and holding steady. I'm trying to keep it moisturized and am doing my best not to scratch it. I think I'm also developing scaly patches on my eyelids. It's a little difficult to tell right now, but if they're going to manifest, it will be in the next few days.

We're eleven days out from potentially closing on the house and hit a bit of a snag with the financial paperwork. Our loan officer is pretty fabulous and I think she has it all straightened out. I have my fingers crossed that the shadow looming over my head is a passing rain cloud and not the other shoe waiting to drop.

I'd like to thank all of my friends--especially including those that I haven't met in person, but hope to one day, for keeping me sane over the past month. It's been quite a mixed bag and so many of you have reached out and offered support and kindness. I'd just like you all to know that I really appreciate every one of you. Thank you.

GvHD on the face

Today, I'm developing a rash on my right cheek. It itches like you wouldn't believe and I'm doing my best not to scratch it. I've also developed a dry, scaly patch on my forehead just above my left eyebrow. I have an appointment with my local oncologist and I'll discuss it with him. Unless it gets out of control, I should be able to manage it with cortisone.

On a more positive note, Chris and I went out exploring around our soon to be new neighborhood. We discovered a gelato shop not too far from the house which I think is going to be hell on my weight. We also noticed a sign heralding the forthcoming opening of a new branch of my favorite doughnut shop in the next shopping center over. If only Chris could convince the owner of Paradise Smoothie to open a bubble tea shop on our soon to be side of town, my favorite snack foods triumvirate would be complete. :)

For Susan and Nancy

Last Friday Chris and I went to a matinee showing of Star Trek. This was my first "big girl" outing since the transplant and I was a little nervous about making my public debut at a movie theater. The last time I went to see a movie was in 2006. Chris works nine to ten hour days so Fridays are usually a half day for him. We got to the theater a half hour late to avoid any crowds and ended up missing the first ten minutes of the movie. The movie was a lot of fun and I thoroughly enjoyed being out and about. I promise not to make a habit of it as I'm still taking half a milligram of Prograf each day and my immune system is still learning the ropes.

As for my episode of food poisoning yesterday...

It all happened after eating a turkey sandwich of my own making. The deli meat was of the commercial variety and comes in one of those resealable/reusable containers. It was nowhere near it's use by date after opening. Chris suspects that it might have been contaminated when someone else went into it. I have no idea. I'm just happy that it's behind me and I'm not vomiting anymore.

I've felt fine all day today and still haven't had any fevers. My allergies are an entirely different story. I suppose that's what I get for living in such verdant surroundings. I continue to have issues with skin GvH. The itching becomes magnified when I get hot or exposed to too much sunlight. There are tiny scaly patches on both arms and I suspect that I'm getting a few on my back. I haven't been able to see them, but I can feel a subtle difference in texture in certain areas. I'll talk to my local doctor about it, but it hasn't become such an issue that I'm bothered by it. A little GvHD is fine so long as it keeps the leukemia at bay.