Monday, April 7, 2008

I've thought about this post for a long, long time. If I would write it at all, number one, and number two, what on earth I would say. I decided for sure today, for reasons I'll get to, that it's something I have to share now.

Almost four years ago, on July 6, 2004, I was diagnosed with Acute Myelogenous Leukemia. This is not childhood leukemia. It's most common in people over 65. It was a week before my 20th birthday, the summer before my junior year at university. I took off fall semester to get chemo, went into remission, returned to school for spring semester, was finally starting to feel like I was back into the swing of things when I relapsed - July 22, 2005. I had more chemo, but this time just chemo wasn't enough, I had to get a bone marrow transplant. My brother and sister weren't matches (they've never been helpful anyway!) but I was extremely lucky to find a donor in the national registry and had my transplant November 4, 2005 - my second birthday. I took a year and a half off from physically being at school because following my transplant I had no immune system. Point. I spent a year locked up in my house, literally, because I couldn't go anywhere for risk of infection and consequent death. But I was very lucky and recovered from my transplant and have been in remission ever since and it's pretty likely to remain that way (knock on wood).

I've struggled with a little bit of GVHD, or graft versus host disease, which is basically the opposite of what happens to kidney transplant patients. In a kidney transplant the body sometimes rejects the kidney; with a bone marrow transplant the immune system sometimes rejects the body. I was lucky that it's never been severe, which can be really, really serious, but I had to go on lots of steroids for quite some time (and am still on low doses) and I still take about 11 different prescription medications. But overall, things are good, and you know, can't complain if this is what it takes to keep me alive.

Hopefully this explains a bit some of my concern earlier this year with medical issues. I had a recurrence of the GVHD in the fall and needed to get a treatment for it, resulting in a lot of stress and misery caused by the miserable people at that horrible hospital. Ironically the people who were the nicest to me during that whole experience were the insurance reps and the administration at the hospital. Guess the doctors and nurses haven't had their compassion training classes yet....

So, because of all of the treatments I've had, mainly radiation and steroids, I've developed cataracts at the ripe old age of 23 and decided to come home during my April break to have surgery done, rather than running off on another adventure around Europe. It's just something that has to be taken care of, and honestly the cataracts are so annoying and such an impediment to my daily life that I am really glad I'm home to get them taken care of. Unfortunately having my medical issues screw up my plans is something I've gotten used to over the past almost four years (has it really been that long?) and somthing that will continue for the rest of my life. But at least I have a life to live.

Why am I sharing this? First and foremost because this is one of the biggest components of my life. Not talking about the fact that I had cancer is like not talking about my family or my job in France. It continues to touch every aspect of my daily life. Yes, in the mundane, physical ways like taking all my meds, but also in the way I look at life and the way I relate to the people around me. I am different from nearly every other person around my age out there, and I think that is part of my problem being friends with the other assistnats. It's that integral to my life; not sharing it feels like lying, and I hate lying. Secondly because it would be awkward otherwise to explain that I came home for break. Reference above about lying.

I'll give you an example that I think sums up perfectly the difference between me and everyone else. The group in Chauny are all friends with this group of people who own or work at the only bar in town. One weekend I was there they took all of us out to a club after the bar closed. I was sitting in this club in Hicksville France at 3 AM, tired and crabby and thinking about how dumb it was to go and what a waste of my time it was. And I said that to one of my friends, I said "this is a waste of time." She responded "That's okay, I have time to waste." I don't have time to waste. I don't have the luxury of being able to waste my life because I have been given this incredibly precious gift of a second chance at life. Every minute that I waste that gift shows that I am unworthy of it. Every second I waste is a second that should be given back to one of my friends who didn't make it through transplant, who couldn't beat the cancer beast in the end. Call it a new perspective on life, call it survivor's guilt, call it whatever you want, it's the way my life works now.

Was I crazy to come to France with all of this medical ridiculousness? I've realized that the answer is yes, I probably should not have come. I think my experiences have sufficiently prooved that to me. But I wanted so much to have some great adventure, to not have my international experience totally ripped away from me, to not be left behind by all of my friends. I couldn't study abroad because of cancer, I missed out on my senior year because of cancer, I got steroid fat because of cancer.... the list goes on. And whle cancer has taken away so many of these things from me it has also given me a lot. I am much less stressed out than I was, my priorities are in the right order, and I've met and befriended and lost amazing people. I changed my career path entirely (that is a long post for another day) and I think that as a result of cancer I will be a better person and do a lot more good in the world than I otherwise would have.

So now I'm at the end of this post and I'm still not exactly sure what I set out to accomplish in writing it or if I even communicated anything. And it's weird that I happened to post this the same day that a huge blogging world story was posted. I flew home on Friday and since then have been enjoying adjusting to a new time zone with my family. I had my pre-op visit today and will have my right eye operated on tomorrow, followed by the left one next week provided all goes well, and will spend an extra week at home recovering from both surgeries. The third week also happens to be Passover and I'm really happy that I can spend hte holiday with my family.

You know what else is weird? It looks a lot more like spring in France than it does in Michigan. THings are getting green in France and blooming, and here it's still all grey and winter-like. Not at all what I expected!


Andromeda said...

Wow you are so strong!! Thank you for posting this, none of us really should waste time, life is such a gift, I try hard to remember that. I worry a lot about driving accidents, it's getting a little out of control actually. I'm glad there were at least a few nice people to help you, doctors are definitely a bit cold here.

And I only did a half marathon, so Lance still beat me by like, a lot, lol. Good luck on your operation, mes pensées sont avec toi!!

Leah said...

It feels good to get things out, doesn't it? Good for you for following your dreams and coming to France. It shows how brave and strong you are. Maybe life would have been less complicated if you had stayed, but I'm someone who doesn't believe in regretting things and I believe things happen for a reason. You were meant to come to France. Why, I couldn't tell you, but it does seem that you've had an amazing experience here and I'm happy for you. Though you're home for an operation, I'm sure it'll be nice to be with your family and get to soak up all the USAness(is that a word?) possible!

Rose said...

In the short time that I met you, you proved to me that you were unwilling to let time pass you by. You were crazy to come to France, but for different reasons than the rest of us. I think it shows that you want to get the most out of what you are capable of, and that you don´t want to miss a minute of anything.
You were impressive to be around for those few days. You´re intense.

Au Soleil Levant said...

Thanks for all the lovely comments guys. I too think that things happen for a reason, even though I struggle sometimes to see what that reason is. All your kind words and wishes mean a lot to me, thank you.

Le Tigre said...

Thankyou for posting this, I had no idea. I think you are incredibly strong and I'm amazed! I think wasting time at places or with people you don't like or in situations that make you feel bad or anything should always be cut short..don't ever feel guilty for that.