Saturday, June 27, 2009

GvHD

When I had my first transplant, I was diagnosed with very mild GvHD of the scalp and skin. I was able to keep it under control with occasional applications of steroid cream and moisturizers. With this transplant, I've had a little more GvHD. My knuckles are larger than normal due to GvHD of the joints, and I don't think they'll be returning to normal anytime soon. I've been wearing my wedding ring on a chain around my neck with the intention of having it resized one of these days.

My body is covered in tiny scaly patches thanks to GvHD of the skin. The largest patch is on my left leg and is about the size of a tennis ball. It looks like a reptile's hide and no matter how often I moisturize, it's always there. My hair hasn't come completely back and you can see my scalp through the small amount of hair that I do have. Throughout the day my skin itches in one spot or another and there are moments when I can't ignore it.

While we were moving, I was out in the sun a lot and noticed that the exposed skin tended to break out in a red rash that would dry out in a few days, then flake off. This is most prominent on my forehead and occurs whether I where a hat or not. I'm also very sensitive to heat and if I start to get hot, it feels like there are bugs crawling under my skin. If I can't get cool fast enough, I start to itch from head to toe and it takes forever to go away. The other day I had to walk across a sunny parking lot and my back and shoulders felt horribly sunburned. I was wearing a long sleeved shirt and was only in the sun for a few minutes. I expected the skin to be beet red since it was so uncomfortable, but when I looked, it looked perfectly normal. It still hurt, though.

I'm doing my best to stay indoors during the sunniest parts of the day and only go out very early in the morning or toward dusk. I know there are other GvHD sufferers who have to deal with much worse and I'm not at a point with mine that I feel the need to go back on steroids. I'll discuss the issue with my transplant doctor in July, when I see her next. If I absolutely have to go back on the steroids, I will.

As for the house, the only boxes left to unpack are in the office. It's mostly books, so they can wait. We still need to assemble some beds and hang mirrors and art. Etsuko still hates Akiko and is still hissing at me off and on. Some of Akiko's tests came back positive for parasites and Etsuko has to be treated for them as well, just as a precaution. I'm sure this has further endeared me to Sookie. Since Akiko hasn't been altered, I'm being treated to a new phenomenon involving male cats laying around my front yard singing. There's one very handsome boy serenading my pretty girl as I type.

Nancy, to sate your curiosity about the cat names, that's all Chris. When we adopted Sookie, I wanted to name her Bacon, but Chris had loftier ideas. He thought that since she was a siamese, burmese mix she should have a regal name to suit her. My line of thinking was that everyone loves bacon. :) We did a little research and settled on Etsuko. Since Akiko is also a siamese mix, Chris wanted to give her a name in the same vein as Sookie's. I suggested Umeboshi. Can you sense a food theme? Chris liked Akiko and so Akiko she became. I have a few more food names in reserve and I'm hoping to win out if there are any more kitties in the future. Although, now that I'm thinking about it, this is probably pretty similar to the discussion my parents had about naming me. I ended up being named for my father's mother, thank God. My mom wanted to name me after a famous figure with a dodgy reputation outside of a handful of countries. The same number of letters and just as easy to pronounce.

Wednesday, June 24, 2009

Life and such

Since we moved into the house however many weeks ago, I've noticed that our sole cat, Etsuko, has been a bit mopey and a little needier than she's ever been. She'd follow me from room to room while I unpacked boxes and put things away, always waiting for me to hold still so she could jump into my lap and remind me that I'd been remiss in my attentions to her. She's a very sweet and loving cat who's been a little lost since her buddy, Jay, died in January.

Chris and I have been talking about adopting another cat since we made the offer on the house. We'd joke that Etsuko really needed a pet of her own to keep her entertained and occupied. Early last week, Chris emailed me a link to a website that features local cats in need of a good home. The site is really just a host for a number of rescue organizations who post pictures of pets in need. For as long as I've known him, Chris has wanted a siamese, and since Etsuko is mostly a tonkinese, we thought the two breeds would sync. My one stipulation was that the cat had to be a rescue cat. All of our kitties have either come from the pound or a rescue organization.

The link Chris emailed me was for a siamese mix who looked a lot like Etsuko. When I read her bio and saw that she was up for euthanasia that Friday due to overcrowding, I couldn't say no. We called the pound which was located in St. Martinville to be sure that she was still available and made arrangements to pick her up that Friday. St. Matinville is outside of Breaux Bridge, which is outside of Lafayette. If you still don't know where it is, you're going to have to google it, since it is hell and gone from Baton Rouge.

After being stuck in traffic for two hours, we managed to find the St. Martinville pound which consists of a trailer in front of a cinder block building, which is really just a facade that opens onto a paddock. It was pretty grim back where the animals were kept and I don't care to go into detail about what we saw. I know they're underfunded and overwhelmed and the people working there are doing the best that they can.

We found the cat who was definitely a siamese mix, but didn't look a thing like Etsuko in person. She'd just weaned a litter and was barely more than a kitten herself. While Chris was saying hello to her, I was looking at a cage full of kittens when I spotted a tiny cream and brown furball curled up in the litter box. It was a chocolate nosed, chocolate eared siamese kitten and I knew if I drew attention to it, Chris would probably want to take it home too. After considering the possibility for less than a second, I blurted out, "Look at this!"

It was love at first sight for Chris, so we walked out of the pound with a bonus kitten and hustled back to Baton Rouge to see our vet. We named the older cat Akiko and the tiny kitten Samu. They were both underweight and smelled like a pig farm. Nancy, before I go any further, I promise you that I didn't handle either one of them, nor did I touch anything at the pound. I'm sure the vet--not our regular doctor, but a partner in the practice, thought I was insane because I wouldn't go near either animal in the examining room.

Both cats were tested for feline leukemia and FIP and stool samples were collected. They were both pronounced underweight and determined to be younger than the employee at the pound had estimated. Akiko is 9 months if she's a day, and Samu might have been 7 weeks. You could feel his ribs and he was just so frail, weighing in at 1 pound, six ounces.

They got baths once we got home and we got the cold shoulder from Etsuko once she smelled the newcomers. She wasn't as keen to have a new friend as I thought she might be. In fact, she hid under the bed and only came out for very short periods during the weekend. Samu and Chris instantly bonded and if Chris left the room for more than a minute, Samu cried for his new "mama". Akiko made herself at home and I worked on making amends to Etsuko.

By Saturday, Chris speculated that there was something wrong with Samu. He wasn't very playful and we'd only seen him eat a mouthful of kitten food. He spent all of his time curled up on Chris's chest or in his lap. We bought kitten milk and fed him with a dropper when he wouldn't drink it on his own. By Sunday, Chris knew something was definitely wrong with the little guy. He was listless and when he cried, he barely made a sound. He wouldn't be parted from Chris and when we went to bed that night, Samu slept curled into a little ball on Chris's chest.

I awoke at three am Monday morning because Samu was clawing frantically at my back. He was having a seizure and every muscle in his tiny body was in spasm. We got him to the LSU emergency clinic as fast as we could. It turned out that he was having seizures due to low glucose. The doctor on duty wanted to keep him for observation while they tried to figure out what was wrong with him. By the time we left the clinic, it was time for Chris to head into work. At 10:30 that morning the clinic called Chris to tell him that Samu didn't make it.

I know he was only with us for 3 days, but he was such a sweet little guy, you couldn't help but have your heart stolen by him. Chris is devastated.

Akiko is thriving and doing her best to give Etsuko a nervous breakdown. She's all of 6 pounds to Etsuko's 14. Regardless of size, she's got Etsuko on the run and Etsuko's none to happy about it. Sookie finally stopped hissing at me last night. I hope to be able to pet her without fear of being mauled by the end of the week. As for Akiko, she's a very affectionate kitty with an appetite like a hoover.

I've got a few GvHD issues that I'll discuss in another post. Nothing too bad, but bothersome, none the less. It all has to do with my skin and sun sensitivity.

An unsuspecting Etsuko napping in a sunny window.

Akiko and Chris getting acquainted.

Chris and Samu at the vet's office.









Thursday, June 18, 2009

Be the Match!

Until June 22, the National Marrow Donor Program will be offering free kits to people who would like to register to become a bone marrow donor. There is usually a fee to sign up, but if you go here and fill out a very short form, the NMDP will send you a kit free of charge. All you have to do once you receive the kit is swab your cheek and send it back. It's so simple.

Everyday, six thousand people search the database for a marrow donor. All too often, a patient in need can't find their perfect match. It happened to me with the first transplant. I was very lucky to find a 9/10 match when I needed the second transplant. Had this very generous woman not come forward and registered, I'd hate to think of what may have happened. Could you be someone's match? Could you save a life just by showing up?

If you do get called up to donate, the procedure is virtually painless these days. In most instances, the donor is given the choice to donate actual bone marrow or peripheral stem cells. Donating peripheral stem cells is like donating blood. During my first transplant, I had to bank peripheral stem cells and all it really involved was laying in a bed while stem cells were circulated out of my body. Two needles. That's it. I slept right through it. Couldn't you spare an hour or two for a good cause?

Please, if you aren't already on the registry, please join. You could give hope to a desperate family in need. Join. Be the Match.

Tuesday, June 16, 2009

Check-up

It's been a month since my last local check-up and I must admit that throughout the house trial and personal drama, I've been waiting to hear that I've relapsed. It's a different kind of sickness that occasionally plagues transplant survivors. Life starts to move forward and you begin to feel secure about your future, then the floor falls out from under you. It's already happened to me once.

This intermittent feeling has been plaguing me for the last six weeks and if I'm truly honest, I didn't think we'd close on the house due to some health catastrophe. The closing happened and our things came out of storage. There are only a handful of boxes left to unpack.

You'd think I'd be able to relax with that behind me, but I couldn't. Somewhere in the back of my mind, I thought that maybe fate was holding a trump card to be played at the very moment I relaxed. Sick, I know.

My hematologist told me I looked amazing and my numbers were nearly identical to last month. If not for the fact that I have a spine, I think I could have oozed off the edge of my chair. After checking my lymphnodes and palpating my abdomen he made the pronouncement that everything was perfect.

I've pushed the boogie man back into the broom closet and placed a chair under the doorknob. I plan on forging ahead and working on building my endurance up so I can really participate in this wonderful thing that is my life.

Saturday, June 13, 2009

Getting there

This past week has served to remind me that no matter how normal I feel, I'm not the same person I was three years ago. I don't know if it was the rush of striking out on our own again, or a compelling need to prove to myself that life does indeed go on that pushed me to take on so much at once. Maybe it was just the excitement of having our old things back that made me want to tear into boxes like it was Christmas. Whatever the motive, I'm feeling the effects now.

After a week of constant movement, my body is reminding me that I need a day off. Countless loads of laundry have been done in the hopes of removing the dust and stale smell of disuse. Boxes have slowly migrated out to the curb to be hauled away. Piles of clothes have been neatly folded and boxed to be donated. The constant activity of the last week has taken its toll and I'm paying my dues by sitting back today and taking it easy.

I've felt so well over the last few weeks. It's a feeling that I find hard to convey, but if you've ever recovered from a serious illness, you probably know what I'm talking about. That horrible listless, helpless feeling vanishes to be supplanted by a kernel of energy. That little bit of energy grows into a sense of security. That sense of security lures you out into the world daring strangers to isolate you as a former cancer patient.

Before cancer and chemo and all of the drug cocktails, I was able to hold down a full time job with crazy hours that changed from week to week and go to school full time. I look back at that woman and wonder who she was. My feeling of well being fooled me into thinking that maybe I was up to the challenge of working eight to nine hours a day. The first day was a breeze. The second was just a little more effort, but not much. The last two days have found me needing to take breaks in between tasks in an effort to stop spinning my wheels. I haven't exactly over done it, per se, but I recognize that I need to back off a bit. I'm not the person that I once was and I'm beginning to realize that I'll never be that person again. That's fine with me. I'm still here and I'm not going to lament the lost ability to keep so many balls in the air. I'm still here.

I'm happily tired from the full time job of setting up house and although there are still a few boxes cluttering the living room, I'm going to reward myself today by sitting back and re-energizing. Etsuko seems pleased with this arrangement since she's been sorely neglected over the past few days in favor of restoring order. She's sitting next to me, haughty in her disdain of her pet person as only a particular kind of cat can be, purring quietly. I'll let my eyes skip over the boxes in the office and the clutter in the spare bedroom. The mirrors and pictures stacked in the corner will not mock me into hanging them. It will get done in due time.

After all, I'll be here tomorrow.

Wednesday, June 10, 2009

Where did the day go?

I almost broke my promise to blog, because I didn't realize how late it was. This day has been a continuous blur of laundry and unpacking interspersed with running errands.

We were scheduled to close on the house Friday at noon and like 99% of house closings, this one didn't happen on time. There was a problem with some paperwork that had to be redone and the seller was late because she was still moving out of the house. By the time we all came together, the underwriter was still working on things on their end. We had the movers scheduled to be at the house at 2pm and a refrigerator was being delivered between 2 and 4. The seller had to have her things moved into her new place and her rental truck turned in by 5pm. When the paperwork still wasn't ready by 1:30, we all agreed to meet back at the title company at 5:30 to finalize everything.

The seller was kind enough to give us the keys so we could get our stuff moved in, etc. The appliance guys were right on time, but the movers still hadn't showed up by 3:45. When Chris managed to get a human being on the phone, they told him that they wouldn't be able to get there until around 5. Dixie was kind enough to come to the house and let them in while we hustled back to the title company to finalize everything.

We ended up doing a dry closing due to various problems with a few documents, etc. A figure was entered incorrectly, which skewed everything and would have put the closing off until Monday, if not for the generosity of the title company and the mortgage broker. They slashed their fees to make the numbers work so that we could get everything done. I think we walked out of the office around 7pm, or so.

The movers were attached to the company that's been holding our things for the last 2 years and somehow, they managed to only bring 1/3 of our things. It turns out that our belongings kept getting shifted around the warehouse and things got separated. The owner promised that the rest of our things would be delivered on Saturday around noon.

Our washer and dryer, as well as the bulk of our belongings showed up around 2:30 and by this point, I was beyond caring. We were ready to have our things back so we could start moving forward. The first night in the house was bliss, regardless of the chaos preceding it. I slept more soundly than I have in months.

Chris and I spent the weekend opening boxes and trying to put things in order. While he's at work, I've been doing enormous mounds of laundry and unpacking what's left. There are still a lot of boxes left to sort through and we'll get it done eventually. We're just enjoying the house and being able to spend time together, right now.

A few highlights of this week include the dedicated outlet to the dryer arcing and singeing the wall when Chris bumped into it. The needle valve attached to the water line supplying the icemaker broke off while Chris was hooking up the fridge and wouldn't stop leaking, which required a plumber to come out on Saturday. Loved writing that check. Most of the lightbulbs in the house were missing when we moved in and when we replaced them, we discovered that only 2 of the recessed lights in the living room work. The nice electrician who fixed the dryer outlet will be back on Friday to have a look at them. We've tried 3 different types of bulbs and know that the cans are wired since they've been tested. The dishwasher stopped washing dishes today. The oven display doesn't come on, so I can't tell what the temperature is set to.

Chris has put forth a theory that all of this adversity may be in lieu of something else, and that we should be grateful that we're only having to deal with pedestrian things rather than cancer. I'm with him on this one. As far as I'm concerned, I'm happy to be dealing with the "everyday" normal things for once and don't get too worked up about it. So long as I get to be with Chris in this house that we waited so long for, I'll happily deal with the small stuff.

Tuesday, June 9, 2009

We're still here

Chris and I are still unpacking boxes and trying to get things sorted out. I'm completely brain dead and can barely form a coherent sentence, so I won't torture you all with a detailed post tonight. I promise to catch you all up on what's been going on tomorrow, after I've had a little more sleep. No worries, things are good.

Thursday, June 4, 2009

Hiatus

The walk through went well enough, tonight. Chris and I had a very busy evening and we're anticipating an even more hectic day tomorrow. We're scheduled to close at noon and the movers are scheduled to be at the house after two. As if that isn't enough excitement, the refrigerator is scheduled to be delivered during the same time. We didn't really have a choice, as this time frame was all that was available with the two services.

We'll be hustling through closing and if worse comes to worse, I'll have to grab the keys and let everyone in while Chris and the seller finish everything up.

We'll be without internet through the weekend and I'm not even sure if it will be connected in the beginning part of the week. I just wanted to let everyone know so that no one would worry. I'll post as soon as we're connected.

Thanks for all the well wishes and sticking with us through all of the craziness!

Happy Anniversary

It's our 5th wedding anniversary and 30 months ago, I wasn't sure that I'd be around to celebrate it. Thanks to my wonderful husband, a tenacious group of friends and family, an anonymous woman half way around the world, a talented team of doctors and medical staff, and strangers who cared enough to do something to help, I'm still here!

Happy anniversary, Chris. I love you.

Monday, June 1, 2009

Tempting fate?

We got a morsel of good news tonight. We may be able to close this week after all. I know I'm probably tempting fate by even writing about this and Chris will be the first to tell you that I've been uber-superstitious about this one. Third time's the charm, and all that.

One final piece of paperwork needs to be amended by a tertiary party and I am ever so hopeful that the person responsible for it takes care of it ASAP. I believe there are two repairs left to do and then a final walk through. Barring anything major, this should be it. I have one thing left to do and I can't do that until the morning.

Now, I'm going to further tempt fate....


More GvH notes

The GvHD of my skin is starting to spread up into my scalp. I've suspected that something's been going on for a while since my hair is coming back very sparsely. My scalp is very visible through the growth and though I've always had thin, fine hair, this is ridiculous. The bumps that keep appearing on my cheeks and forehead are now visible in my hairline and behave in the same manner. They start out as small swellings, then become itchy, and finally dry out and become flaky. It's attractive in the extreme.

I'm hopeful that my transplant doctor will prescribe a steroid suspension to treat my scalp, instead of wanting to refer me over to the dermatologist. I'd rather start on a treatment sooner, rather than later. Re: I want hair!

My next appointment in Houston is in July, but I do have a local appointment in two weeks. I'll hit the 9 month mark on Saturday and Chris and I celebrate our 5th wedding anniversary on Thursday. We've agreed to no presents in light of the appliances that we'll have to get for the new house, if the deal ever finalizes.

Still haven't closed. We're anxious. The seller is anxious. The mortgage broker dangled a carrot this morning by telling us that we should know something from the underwriters today. I heard that little nugget a few times last week. In fact, the phrase, "closing could happen as early as Wednesday," was bandied about. Not looking likely.

We have an absolute drop dead date that we have to be out of Dixie's house and there is absolutely no wiggle room. If we can't get something definite out of the underwriters this week, then Chris and I will need to start making other plans. I refuse to get stressed by this debacle. I know hundreds of other people are in the same situation as us with trying to get funding. It's just a result of what's happened in the past and the ramifications that it's had on banks and lending institutions. It is what it is and no amount of worrying on my part can change anything. Can you tell that I'm trying to convince myself not to get manic?

I'll post when I know more.