I have to get up sooo early tomorrow. Ok, so it's just 6:30 am and many people get up way before that, but I am not usually one of them. I'm heading to Nashville...again. I have another appointment with my rheumatologist, the 4th in the last 6 months and I actually have another appointment scheduled that not many people know about.
Several months ago, I was made aware of a few other people with scleroderma getting lung transplants. Although I have known about it for awhile, I hadn't really considered this as an option for me since a lung transplant won't make scleroderma go away. I mentioned it to my doctor about a month ago and she seemed to think it was a possibility considering I don't yet have any other severe system issues outside of my lung function. So fast forward to tomorrow and I'm meeting a lung transplant specialist at Vanderbilt. I wouldn't be able to have the transplant there, as they don't do them for scleroderma patients. In fact, there are only 3 hospitals in the US that do, the most likely being in San Francisco. I'm just going to meet with the specialist tomorrow and she'll do a sort of pre-screening to see if I'm even a possible candidate for referral to a program.
About a week ago the tranplant specialist sent a new patient packet to me with all the information I'd need and in it there was a booklet with facts and program outlines. I read through it and came to the section that listed the qualifications to be considered for a transplant. I stopped when I read that a candidate would have a life expectancy of 18-24 months. I'm telling you, I knew this already. I know this. But there are these moments that happen, where the reality of that timeline becomes acute and almost shocking all over again. Then I realize how precious my time is.
In the past couple of weeks, at times, I've wondered if I've already lost it. I almost can't believe I'm even considering something like this again. It takes a lot of energy and there's so much emotional and mental strain. And then I think, but what if you could live to celebrate your 40th birthday? What if you could see your oldest niece turn 18? What if you were made well enough to walk around Rome one day? I suppose all the "what ifs" are worth at least the first visit tomorrow. Then, we'll see.
Lone Cyprus
Sunday, April 25, 2010
Monday, April 19, 2010
This is what they're for
I have been so lucky to have many good friends in my life. Some from high school and college, some from church and work, some from living in Nashville or Louisville, some from random places or who were friends of friends. Even now, I have more people who I would call friend than I could name. Yet there is this group of girls that are so close and have been so important in my life that the word 'friend' doesn't quite fit.
Sure we do the normal friend things. We laugh, we talk, we cry, we complain, we celebrate. But these friends of mine aren't normal. It's not normal to be a young adult and have a close friend who is sick. It's not normal to sit with your friend during chemotherapy or sell half pot tickets at a fundraiser for her stem cell transplant. It's not normal to have to carry your friend's luggage or open her sodas. It's not normal for your friend to tell you she's dying. Before I found out I was sick, I would have told you I had great friends. Now, I know them, appreciate them and love them in a way I didn't know I could. I can't believe what they've dealt with from me and that they are willing to endure more.
Everything I want to say seems kind of cheap. I definitely feel like nothing I can write down is going to do justice to the privilege of having each of these girls in my life. I do want to say a few things. I want to write your names down and share just a bit of my heart about each of you.
Rachel, you are loyal and loving. You believe in me and support me no matter what. I never worry about your judgement or whether or not you'll be there. You let me go on and on about the same crap and you still listen. You, my friend, are the real deal.
Rebecca, you are probably the most thoughtful person I know. I have never, for one second doubted that you love me and you care for me. I know I can count on you to look out for me and you are always first in line to help. And really, what's Chicago without Peter Cetera??
Erin, girl you crack me up. We laugh so much together and I love every second of it. I feel privileged when you share your heart with me and I am so grateful that you allow me to share mine with you. I look forward to taking those ducks in the Pimpala to get some biscuit food.
Emily, I've known you since puberty. I remember meeting you in church in Junior High, being on the swim team in high school and you letting me invade your group of friends at the lunch table. We share similar taste in music, movies, TV and sports but thank God we would never like the same men! You're my fellow planner and adventurer and don't forget that "we only have each other."
Kasie, we've been friends for the least amount of time but most of the time it doesn't seem that way. There are many years between us, but there's a sense of familiarity in your character and values for me and your friendship has felt easy and natural.
Vanessa, I love you and I'm so glad we're friends. See, I can say that with no Captain! Can you??? Seriously, you've been such a great listener and a constant cure to my loneliness. I really am so so glad that we've grown to be such good friends!
Claire, you're the most difficult to put in words. We probably don't have the most 'everyday' things in common. We don't spend the most time together. We don't have similar families or dreams or beliefs. Still, I don't know that it would be possible for you to be any closer to my heart.
I can't believe you're all still hanging out with me. But I'm so glad you are. I am certainly the most blessed person to have friends like you. There are probably a list of things about me that drive you nuts and unfortunately I will likely give you many opportunities not to be proud of me but in this moment, as I write this I am filled with the certainty that you will be here with me. You'll walk, you'll fight, you'll sit, you'll laugh, you'll cry and you'll hold my hand. Thank you, my buddies, my chums, my comrades, my confidants, my cronies, my pals, my companions, my sisters, my friends.
Sure we do the normal friend things. We laugh, we talk, we cry, we complain, we celebrate. But these friends of mine aren't normal. It's not normal to be a young adult and have a close friend who is sick. It's not normal to sit with your friend during chemotherapy or sell half pot tickets at a fundraiser for her stem cell transplant. It's not normal to have to carry your friend's luggage or open her sodas. It's not normal for your friend to tell you she's dying. Before I found out I was sick, I would have told you I had great friends. Now, I know them, appreciate them and love them in a way I didn't know I could. I can't believe what they've dealt with from me and that they are willing to endure more.
Everything I want to say seems kind of cheap. I definitely feel like nothing I can write down is going to do justice to the privilege of having each of these girls in my life. I do want to say a few things. I want to write your names down and share just a bit of my heart about each of you.
Rachel, you are loyal and loving. You believe in me and support me no matter what. I never worry about your judgement or whether or not you'll be there. You let me go on and on about the same crap and you still listen. You, my friend, are the real deal.
Rebecca, you are probably the most thoughtful person I know. I have never, for one second doubted that you love me and you care for me. I know I can count on you to look out for me and you are always first in line to help. And really, what's Chicago without Peter Cetera??
Erin, girl you crack me up. We laugh so much together and I love every second of it. I feel privileged when you share your heart with me and I am so grateful that you allow me to share mine with you. I look forward to taking those ducks in the Pimpala to get some biscuit food.
Emily, I've known you since puberty. I remember meeting you in church in Junior High, being on the swim team in high school and you letting me invade your group of friends at the lunch table. We share similar taste in music, movies, TV and sports but thank God we would never like the same men! You're my fellow planner and adventurer and don't forget that "we only have each other."
Kasie, we've been friends for the least amount of time but most of the time it doesn't seem that way. There are many years between us, but there's a sense of familiarity in your character and values for me and your friendship has felt easy and natural.
Vanessa, I love you and I'm so glad we're friends. See, I can say that with no Captain! Can you??? Seriously, you've been such a great listener and a constant cure to my loneliness. I really am so so glad that we've grown to be such good friends!
Claire, you're the most difficult to put in words. We probably don't have the most 'everyday' things in common. We don't spend the most time together. We don't have similar families or dreams or beliefs. Still, I don't know that it would be possible for you to be any closer to my heart.
I can't believe you're all still hanging out with me. But I'm so glad you are. I am certainly the most blessed person to have friends like you. There are probably a list of things about me that drive you nuts and unfortunately I will likely give you many opportunities not to be proud of me but in this moment, as I write this I am filled with the certainty that you will be here with me. You'll walk, you'll fight, you'll sit, you'll laugh, you'll cry and you'll hold my hand. Thank you, my buddies, my chums, my comrades, my confidants, my cronies, my pals, my companions, my sisters, my friends.
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