Tuesday, August 28, 2012

yes, i know you aren't technically "littler" than me anymore...

Growing up, T and I had a very balanced relationship: both far edges of the grey area between adversaries and colluders were evenly stacked. Sometimes he was the typical obnoxious, youngest sibling; sometimes I was the disappointing- or antagonizing, middle child. There have been a few painful verbal volleys, particularly as we both struggled to navigate adolescence and young-adulthood, but when I think of my little brother I think of all the times we've looked out for one-another.

One of my earliest memories of T being my brother and not just some wiggly baby in the house is of liberating him from his crib during nap time so we could play on the floor of our room. We had to play very quietly, but I think we got away with not taking naps for about two weeks before our mom got wise and turned the crib so the drop-down panel was facing the wall.

When we were 9 and 13, our parents divorced. T and I handled the new family turbulence differently, and neither of us particularly well. We fought more, as teenage siblings are wont to do, but it hurt extra when we did because we were the most constant constant each other had. I think I was supposed to be a good older sister and screw up less, help him more, but I didn't know enough about taking care of myself to know how to look out for people who might need me. Still, it always felt like T and I were in this little boat together in a big, crazy ocean... and who can not fight when you are two people in a little dinghy in the middle of the sea? It's inevitable when you are frustrated and don't know what to do. It wasn't all arguing and angst, though. We helped each other through homesickness at camp, teamed up on the hard dungeons in Zelda, devised ways to circumvent our parents, and commiserated when life was feeling a bit too overwhelming.

As adults, our relationship is the best it has ever been. We have become interesting, loyal, clever people and continue to grow as individuals. I get some of the best encouragement from him when I need it, before I have a chance to ask. I am impressed with the man he is becoming and I try to live my life the way I wish I had when I was not a very good sister because I want him to be proud of me, too. We share an unbreakable bond as siblings, and we take that bond seriously. We have an amazing older brother, as well, but T and I grew up on that little boat together.

T is the only relative I have that could be considered as a bone marrow donor. He is my only full sibling, and still there is only a 25% chance he'd have matching HLA markers. He also happens to have the immune system I always wanted. When I had chicken pox for 3 months, he had it for 3 days. Every time I had the flu, I would end up with bronchitis or a sprained rib from coughing; I can only think of a few times that he even had a cold. T didn't miss a beat when he offered to be my donor. My mom let him know as soon as we found out I had MDS, and while I was home trying to think of how I was going to ask him to go through weeks of discomfort so I could have some of his bone marrow, he texted me that he wanted to be screened as a donor. 

We've waited a long time to find out if he's a match. First, I had to get on Medicaid. Next was the long wait for Medicaid to approve my bone marrow transplant. The total timeline there was about six months and when the transplant was approved T got a swab in the mail. The two weeks it took for the lab to get his cheek swab, test it, and compare it to my work-up were the most tense of all. Dealing with Social Security and DHS is a frustrating mess, but I want T to be my donor more than anything. Not just because he has a rockin' immune system, but because it would mean the world to me to know that my little brother is the one saving my life. I would be just as grateful to get marrow donated by a stranger, but T means so much to me I would rather have his marrow kicking all the crazy out of my bones.

Imagine my elation this morning when I read an e-mail my transplant doctor sent this morning that said T is a perfect match!

Monday, August 6, 2012

on living life and paying the price

When will I learn? It seems no matter how much I know my body isn't working the way it did for 28 years, I expect it to possess an untapped pool of resiliency I simply haven't accessed. This is not the case. It used to be -- as I imagine it is for most people in a normal, healthy state in my age bracket -- I could engage in moderate activity for a day, go to bed tired, and wake up refreshed the way one does after a well-deserved sleep. I'm not used to this broken body. I expect adequate sleep, water, and healthy fuel will be enough to recharge and go forth into the next day but that belief proves to be founded in hope and indicate that a bit of me is living in the past or far, far future.

I went to an amazing wedding this weekend. R's best friend married a friend with whom I had been close as a teenager. Their wedding took place at an idyllic hot springs resort in central Oregon surrounded by trees, rushing river waters, and people who love them both deeply. The meadow ceremony was followed by a meal that hummed with joyous conversation and a campfire reception that carried that joy well into the night. It was perfect in that it was full of love and celebration and was executed with the wry, merry way we all expected from the couple. I was honored to be present and had saved up my energy all week in order to handle what I knew would be a bigger expenditure of emotional and physical fortitude than I had endeavored since my first surgery in November. I could feel the sun and trails sapping my strength every minute faster than I am accustomed in my modest, small-sphere existence, but the joy of being present was enough to eclipse my building fatigue. After laughing and reconnecting with friends I found myself alone with the last stragglers and then just R, who helped me put out all the last embers and wander back to our tent.

Eight o'clock in the morning pulled me from a fitful sleep with something so much more than the mild hangover I was expecting. I don't recall drinking to excess, and certainly had more alcohol in my system on my birthday back in May. The morning after my birthday was met with a mild headache and a bit of malaise that was cured with a large glass of water and a healthy breakfast. The morning after the wedding was a different story. Taxing my body with heat, dehydration despite the gallon or so of water I guzzled, wandering around the wooded trails, and a celebratory amount of alcohol was far more abuse than I can handle. I found my limit, crossed it, and did not recognize it until I had smashed into a wall miles beyond. I could barely move without fear of pitching over; all my limbs were weak and shaking, my head and middle felt inside-out and scalded. Every action required concentration and still took far too long to accomplish. R was gracious and kind in the way he always is when I am feeling out-of-sorts and opted to start our three-hour drive home before eating breakfast. We nursed blue-flavored sports drinks all the way home, and he let me nap next to him as he manned the helm on an empty stomach.

Once home, I was still shaky. Not just weak, not just tired, but quite literally shaky from fingertips to toes. I climbed onto my sweltering bed, sipped pitifully on cold water from the refrigerator, and slept most of the afternoon and evening away. I woke up this morning feeling sucked dry, drained of anything that could power ambulation. I chatted on Facebook with a friend for two hours while trying to will myself into shorts so I could walk across the street for a cup of coffee. Once there, I realized too late that I wasn't ready to interact with other humans and irritated the new employees at the cafe with my inability to succinctly place my order. I think they assumed I was hungover or stoned and I wished the usual pair of long-time baristas were there to glance at my glazed face and know and treat me gently and insist on bringing my drink to my table without me even having to open my mouth to order.

Back on the floor of my bedroom now, feeling pathetic, wondering if this is a preview of what life will be like when I am home from my post-transplant month in the hospital. No one is sure yet when that will be. The transplant seems to hop miles off every time I think it is getting closer. I heard from one of my doctors that the testing phase has been approved by Medicaid so the ball is rolling. My brother should be getting his swab in the mail any day now. Maybe he will be in that 25% and be a match and this ball will roll quickly. The 75% likelihood he will not have all the same HLA markers in all the same positions mine are says I will probably find out in somewhat short order that I really will be on Vidaza for months and months while they comb the international registry for a match. In any event, if I have to feel as awful as (or worse than) I have in the last 36 hours for months before I start to feel better but then get to have my own amazing wedding with R, and spend any multitude of days on the river with A & K, and watch my nephew one day graduate college, and see both my brothers marry their beloveds, and travel the world with my friends and fella, and carve out the life I so badly want, it will all be worth it. Just as it is worth it to feel like dried-out roadkill for two days in order to witness two amazing humans begin a marriage that is sure to be blessed and full of love.