Sunday, November 25, 2007

Day +180

When I was first diagnosed with leukemia, I thought no problem, people get treated for this everyday. When I was told that there was a unique mutation associated with my particular type of leukemia, I thought that if they knew such a thing existed, there must be some form of treatment for it. When I was told that I needed a bone marrow transplant, I believed that I was on the road to being cured. Then I found out that my form of cancer usually only shows up in girls under the age of one and oh, by the way, your ethnic makeup makes it nearly impossible to find a genetic match for a transplant.

It never occurred to me to give up. I was told that with the standard chemotherapy protocol for ALL that I'd have a 92% chance of being dead by the end of the year. My insurance company wasn't overly concerned with the fact that I'd be dead and off their books when they denied my stem cell transplant. Still didn't believe it would happen.

I discovered that there were a lot of people who cared about what was happening, and took it upon themselves to do whatever they could to help us. Some I knew very well, and some were complete strangers who had read about our story and wanted to help. I was constantly surprised by how caring people could be and the lengths that they would go to in order to make things happen.

The insurance company gave in and paid for part of my transplant. The part that they wouldn't pay for involved expanding one of the umbilical cords in order to give me more cells during the transplant. The expansion of the cord was an experimental procedure and was not covered by my insurance company. I didn't have to have the expansion, it just happened that a computer randomly assigned me to have it done for a transplant study. The expansion would potentially increase my chances for success and so we were prepared to pay for it ourselves. Someone beat us to it. To this day, we don't know who sponsored me for the study. We've heard rumors implicating a transplant doctor and we've also heard that it may have been sponsored by a private cord bank. A stranger paid a very large sum of money to give me a chance. I hope they know how forever grateful we will always be.

This January, I wondered if I would live to see my birthday. Deep down, it just didn't occur to me that I could really die. I was terrified by everything that was going on and I was worried about how it was affecting Chris and I just wanted to be able to pick up and be normal again. Abstractly, I knew that my prognosis was not good and I could die at any time.

I turned 33 in October. Thursday, I shared a lovely meal with people I love. Today, I sat quietly, alternately reading and knitting. Today marks my sixth month anniversary. I got yet another day to be thankful for everything that has happened to me. I got another day to talk to a friend living far away and another day just to be.

I hope to be able to live quietly for the next thirty years, thankful for every precious moment.


Susan Carrier said...

Wow! It's so amazing to hear your story summarized in one post. I went from cold chills to tears and back again.

Now I'm really appreciating your brief bout with boredom a few weeks ago.

Here's to more boring on the way to the new normal!


Anonymous said...

You are such a strong person!!! Your personality and Great attitude i am sure has had a lot to do with your have always been positive and that makes such a difference in so many ways on how people recover!!!! plus if you were ever have Chris at your side to keep you upbeat and assisting in every way he can!!! such an loving and inspiring relationship you both have, it is great to see that esp now days!!! i am so happy to hear you are doing so well!!!! take care Lisa :)

pj said...

Well said, Ann.

Anonymous said...

Dear Sweet Ann,

You have so much to be thankful for in this season of holidays and I know that this season will be especially poignant for you and your family. The true meaning of Thanksgiving, Christmas, life, love and giving will really be at the forefront of your days this year.

Thank you for such an eloquent post. We are all touched by your experience and it has served to remind us of what is important in life. Because of you, this holiday season will be especially important to all of us.

Love and prayers from out west.

Anonymous said...

Oh, and regarding the last sentence of your post....You will. You, most certainly, will.

Love and prayers from out west.

Anonymous said...

Dear Ann and Chris,
Happy late turkey day, computer is acting up so i haven't been able to read. I know that I feel very blessed to have found a friend who is so very strong, through everything you and Chris have been through you have both stayed strong for each other and I have really learned alot about love by knowing what you two have been through together. I am so thankful that I have made a friend that will be there for me when I am scared, through your strength, I got through my tests, you were there for me to talk to even with everything you were going through you were such a good friend to me. I Wish nothing but MANY GOOD BLESSINGS FOR YOU AND CHRIS!!! Please know that we are all rooting for you and we all feel lucky to have you. You have touched people in a very special way through this blog as well as teaching us about something that many of us knew absolutly nothing about and probably would have never thought twice about, so THANK YOU FOR TEACHING US, THANK YOU FOR YOUR STRENGTH, AND MOST IMPORTANTLY THANK YOU FOR YOUR FRIENDSHIP!!
Always Thinking of you both.