Tuesday, May 26, 2009

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.

Friday, May 22, 2009

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.

Thursday, May 21, 2009

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.

Tuesday, May 19, 2009

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.

Monday, May 18, 2009

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.

Sunday, May 17, 2009

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. :)

Friday, May 15, 2009

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.
I had a bit of a bad day yesterday, which started out perfectly normal. About an hour after eating lunch, I started to get that familiar feeling that screams food poisoning. I haven't really suffered with food poisoning since my initial diagnosis, but when you've been through it once, you can't forget the feeling. I became nauseated and my stomach was twisting itself into acidic knots. After everything that I've been through, I've developed an aversion to throwing up. I'd rather suffer through managing nausea. Call me a glutton.

By the time Chris got home from work, I was feeling a little better, but the ever present churning feeling was still with me. He suggested that I might feel better if I just let go and vomited. I knew he was right and after hours of minor misery I realized that I was just being stupid. I did the deed and immediately felt 100% better.

I think Chris felt better, too, since he was able to rule out something more nefarious. My temperature remained stable for the rest of the night and I'm feeling like myself today. Sometimes a thing is what it is and no amount of worrying can build it up into something it's not.

Coincidentally, I had my doctor's appointment moved up a week. I'd just rather get it out of the way so I can dedicate the week after next to getting all things house related done. Fourteen days and counting.

Wednesday, May 13, 2009

Coincidences

Chris and I had an interesting conversation last night concerning my upcoming doctor's visit and its overall timing. Those that have been following the blog know that the past two times we've tried to buy a house, something monumental has happened concerning my health. After we made an offer on the first house, I was diagnosed with PTLD and had to return to MDA for treatment immediately. Six months later, we tried again and the day we were scheduled to close on that house, I was sitting in a hospital room being told that the leukemia was back.

It's eight months later and Chris and I find ourselves back in the middle of a familiar process. The current house's seller has agreed to our repairs request and I've started securing home owner's insurance. A lot of the same people who have been involved with the last two sales are currently involved with this one. We're tentatively scheduled to close in sixteen days. I say tentatively because all parties have agreed to an earlier closing date if the financing can be secured sooner than scheduled.

This all leads me back to the doctor's appointment. I'm scheduled to see my local doctor the week of closing. Three days earlier, to be matter of fact. Chris and I both wondered if I should just move the appointment up a week to get it out of the way. It's just a routine visit to check my blood work and overall condition. Only, with my track record it could turn into something else. I know to think that is irrational, but after you touch a hot stove once, you tend to shy away from such things.

I feel well and haven't had any fevers. My appetite is good and I've even gained a pound this week. I haven't had any mysterious coughs or unexplained sore throats. The fact that I'm completely asymptomatic of anything still doesn't put my mind at ease. I keep waiting for the proverbial shoe to drop.

I've also been harboring a bit of anxiety the last few weeks over the relapses of two friends. Patricia and Michelle have both had transplants, just like me. Anyone who has ever danced with blood cancer, whether as a patient or loved one, knows the anxiety that the word "relapse" evokes. They both have their game faces on and are moving forward with treatments. I've been down that road and know that you can come out the other side smiling, but it's one hell of a trip.

All of these worries have been percolating and sloshing around for days and taking their toll. I'm not sure if I will move that doctor's appointment up or not. I do know that I can only control certain things in my life and as for the things I can't, I just need to accept it and let it go. Maybe all of the previous illnesses coinciding with our trying to buy a house have been coincidences. I don't know and now that I've purged my mind of it, I'm not going to let it worry me.

Monday, May 11, 2009

Donor drive in Cleveland

If you're in the Cleveland area, please consider taking the time to go and donate. The following information is from The Gift of Life website.





Two year old Eve is an adorable little girl. Like any parent, Eve’s mom and dad envisioned a bright and promising future for their daughter. Then disaster struck: Eve was diagnosed with acute leukemia. A bone marrow transplant can save Eve’s life, but she currently does not have a matching donor, and time is of the essence.

Eve is not alone. It is reported that one in 200 Americans will receive a transplant with marrow, blood stem cells or cord blood in their lifetime. One in 400 will require cells from another person (a donor). Only 30 percent of patients have a relative who is a match. The rest must search the unrelated donor pool. There is an urgent need to grow the registry of potential donors so that all patients like Eve can have an equal opportunity to receive the transplant they so desperately need.

Gift of Life will be hosting a donor recruitment drive at the Beachwood Mandel JCC, 26001 S. Woodland Rd in Beachwood, Ohio on Sunday, May 17 from 9am – 3pm and Monday, May 18 from 6:30pm – 8:30pm.

You can find out if you are a match for Eve and countless other children and adults by joining Gift of Life, an affiliate of the National Marrow Donor Program and the worldwide donor registry. Testing is fast and painless, involving only a simple cheek swab. Eligible donors must be between the ages of 18 – 60 and in general good health. The goal for this drive is 1,000 new donors. Since tissue type is inherited, like eye or hair color, Eve’s best chance of finding a genetic match lies with donors of Eastern European Jewish descent.

A family friend wrote, “We thank you from the bottom of our hearts for responding to this urgent call. And so does Eve, whose courage, humor, and unsinkable spirit – even at 2 ½ years old – are an inspiration to all who are lucky enough to know her.”




More House News

It's been almost a week and we're slowly sliding toward our end goal of once again being home owners. Chris and I are waiting for the seller's response to our repairs request. I promise, we kept it sane and only asked for the "major" things that really should be operational before you move into a place. Remember, Chris is an engineer and I'm a construction nut so there are certain things that we tend to focus on. Minor cosmetic things, I could care less about. I'll get to those things in due time. We should know something by tomorrow night, I hope. Right now, I think we're trying to beat the "curse of the home purchase".

There are eighteen days until we potentially close. This is house number three in two years. I'm sincerely hoping to break this weird cancer streak once and for all and move forward with our lives. I've already put together a long range plan for home improvements. It's giving Chris a nervous twitch, as he believes he'll be spending every available weekend either on a ladder or holding a power tool. You should have seen his face when I told him that I'd come up with a landscaping plan for the back yard. He is not an outdoors kind of guy and whenever I wanted to do anything remotely green at the last house, I was mostly alone. Don't get a bad impression of the love and light of my life. He gladly suffered many hours at local nurseries while I dithered over which plant would do best in our shady little garden. He happily carried bags of soil and mulch. He could even be counted on to dig the really big holes when I needed him, but the minute it looked like I could be self sufficient, he was in the house like a shot.

Trust me, I have my share of "honey-don't" chores. When he tiled the kitchen floor, I couldn't get away fast enough. I can't stand the feel of mastic on my hands and I swear that I can hear the sand in grout as it scrapes across stone. The sound makes my teeth itch.

Lucky for Chris, I still can't be out in the sun for extended periods of time and the small backyard of our potential new house is riddled with mature trees. You literally cannot take five steps without running into one. They're right on top of the house and will eventually need to be removed before the root systems start to wreak havoc on the concrete slab. That's a project that calls for a professional and can wait on a distant day.

The landscaping in front of the house is a bit slap-dash and relies heavily on evergreen shrubs. The plants are all mature, so I'm guessing the house's original owners get credit there. That's another project that will have to wait until I'm healthy enough to tackle it. As it stands, I can just lift twenty pounds, so I can't imagine the effort it's going to take to relocate a twelve year old sago palm.

On the health front, I've been managing to stay fever free. I still have small patches of GvHD on my arms and torso. My new immune system seems focused on my skin. It seems to constantly itch in shifts. Some days it's minor and confined to a small area. Yesterday, I was scratching from head to toe all day long. My local doctor offered me something to help, but I demurred. Right now, I'm just happy to know that the donor cells are doing something. I can bear the itching, so long as I'm getting a GvL response. If the itching becomes unbearable, I'll give in and take an anti-histamine, but for right now, I'm enjoying the little inconvenience. It lets me know that I'll get to be here for another day.

Wednesday, May 6, 2009

House--part 3

I just got back from having the potential new home inspected and I'm wiped out. I'm still finding the boundaries of what I can and cannot do. I never really know how I'm going to be effected by something until I do it. Three hours of walking around and sitting in a strange house apparently takes the mickey out of me.

I got to the house early and within minutes, Kary, our home inspector arrived. I'd met him once before when we made an offer on the last house. He was an absolute pleasure to work with then and I wasn't disappointed this time, either. We talked shop the first time we met and he's the kind of guy that will invite you to tag along while he's working and explain to you what he's doing. Believe me, not all home inspectors will do that. Lucky for him, I was recovering from the first transplant, or I would have taken him up on it.

He was a building contractor for 17 years before he switched careers, so I had fun picking his brain about how things get put together and the crazy things some people do. The last time he worked with us he learned of our situation with the leukemia and the transplant. It's been so long since I saw him last, I was sure that he would have forgotten us. Not so. He asked what happened with the last house and I caught him up on the last eight months.

Just like Angela, my realtor, Kary, who owns At Ease Home Inspections, LLC, is an absolute doll to work with. He's always patient with us as Chris and I pepper him with questions about houses and systems in general. He's thorough and most of all, he's considerate. He takes the time to explain each item as he comes across it and if you're not clear on it, he'll take you through the issue until you understand it. I've dealt with other home inspectors and this isn't always the case. I've been brushed off or told that "it would be in the report." Kary's not like that. For lack of a better description, he's just a really good guy and we all know the world could use a few more of those.

So, if you've been keeping up with the blog, you already know that I love Angela Jordan at ERA/Stirling. Now you know how invaluable I believe Kary at At Ease Home Inspections is. Yes, I know this looks like one giant advertisement, but they've been very good to Chris and me. After having been in the service industry for so long, customer service and an overall trust for an individual are very important to me. They both have my trust and appreciation for the great job they do.

I should have an electronic copy of the inspection tonight. There were a few deferred maintenance issues and one or two crazy surprises. Not crazy in the sense that there's a fully rebuilt car in the attic, but strange enough that it made me wonder what previous owners must have been thinking. Chris and I will review the report tonight and make a few decisions. Net/net, so long as the current owner is willing to work with us on the big stuff, I don't foresee any insurmountable problems. The small, nit-picky things, I can live with. A little paint, a bit of caulk, and a dab of gorilla glue can do wonders.

Once we get over this hurdle and the loan paperwork looks good, I promise to post pictures of the house.

Monday, May 4, 2009

House update

I confirmed an appointment to have the house inspected this week. Slowly, but surely, we're creeping toward resuming living in the "real" world. Please cross your fingers that there are no alien swarms lurking in the attic, or jabberwockies in the linen closets. I'll settle for the mundane little fixes that Chris and I can tackle with a five minute trip to the hardware store and an hour long debate on which of us has the better solution. :)

Friday, May 1, 2009

House

Lea, I promise pictures will be forthcoming. I just don't want to jinx anything. :)