Checkup

Chris and I are headed to Houston tomorrow for a ten month check-up. My skin GvH is flaring nicely and I even have an active spot on my scalp to show my doctor. Fingers crossed that they don't disappear overnight so I have a visual aid. Off to bed I go.

In the realm of all things normal this has been a less than stellar week. In the world of cancer, it's been business as usual. The transplant community in which I exist is a tight knit family with too many members. It is populated with some of the most amazing, accomplished people it has ever been my pleasure to know. We reach out to each other with love, support, advice, and experience. I'm sure it's the same for people with various types of illness, always looking for the shared experience and a virtual shoulder to lean on.

This week I learned that my friend Michelle is facing some difficult decisions. Yesterday, I learned that Graham, a two year transplant survivor and fighter, had died. He had conquered his rare form of leukemia and suffered through severe GvHD and numerous infections. His wife, Sam, has been a constant voice of support on the Leukemia and Lymphoma Society website. My heart breaks for Sam and her two small children.

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.

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.

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.

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.

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.