Most of the time, I take things moment by moment and try not to think of the big picture, but sometimes something happens to bring it all into focus. I'm hit with the magnitude and seriousness of what I'm doing, start thinking about the numbers (15% mortality rate) and freak out with abandon. But there's no going back, is there? And, I didn't really have a choice, did I? As one of my nurses on 11 Long (when I balked at the amount of pills he was giving me) said in his thick accent, "You want to live, yes?"
What did it today was an email. I'm on a CLL list, which I casually scan from time to time. Today, a husband sent a message to the list saying that his wife had died, complications of a bone marrow transplant, mini-allo, non-related matched donor -- basically, just like mine. She was 40 years old (kinda blows the whole "but you're young" thing out the window).
I wouldn't have seen it, but it was the top message on the thread. Now I wish I hadn't. I hate it when reality sneaks up and hits you in the face like that.
But right now everything is fine. I still have my ups and downs, but the time I spend feeling good is increasing. Saturday, Ron, Ian, Zach and I went on a walk around Lake Lagunitas to visit Bambi's bench (for those of you who don't know Bambi Holmes was Marlene's sister, who died in a tragic car crash twelve years ago; the bench is an homage to her memory). The day was overcast, so it was the perfect kind of weather for me to be out in (I was sporting my new UV-protective hat and jacket anyway). Zach was so happy that Mommy was "out on the hike," because he usually just goes with Daddy. He held my hand and, every other step, he'd slide his feet apart like he'd slipped and say "Whoops!" then laugh his head off. I love the sound of his laugh.
I have to keep remembering and repeating moments like these and use them to stamp out the negative feelings and fear that creeps into my head.
--Katie
Comments (6)
Dude,
It's strange how the sum of life's full composition is really made up in these moments like the ones you wrote about today. On one end, a bittersweet end to someone you don't know, yet can identify with....On the other, a wonderful afternoon with your boy. Conflicting indeed. Thanks for sharing.
Posted by Peter Z. | July 14, 2008 11:58 AM
Posted on July 14, 2008 11:58
I have been waiting for something like this to come up. It happens to all of us. First and foremost the statistics you keep hearing are old. They don't have up to date statistics because the research tends to be far behind. I have talked to 2 people in the last 2 weeks that are over 15 years out from transplant. Don't focus on the statistics there are so many factors that play into these that you don't know about. Age, health status, how they took care of themselves post transplant... You don't have the details so you can't focus on them. I know it's hard, so let me tell you my statistics... 2% of women under the age of 60 get my disease, so the statistics for my disease were TERRIFYING since it is an older person disease most of them die. I had to ignore the statistics and fight for me. I am proud of you for going out and having a great day despite the fear you have in your heart. If this takes the good times away then even though you had the transplant the disease won, so don't let it. As for the pills... you asked if I still take pills and the answer is yes. I still take a handful of pills 4 times a day. Everyone is different it all depends on things like GVHD and how well your body holds onto things like calcium and other vitamins. You just have to take it one day at a time. I know a lot of people that aren't on any meds and I know people that just have to take some basic vitamins. There is no way to shield yourself from the scary emails they will find you and to this day I still encounter people that have stories that scare me. Hold onto this: you are doing well and while there are people that didn't make it there are people that did, so hold onto those people and know that we are here for you and cheering you on!!
Posted by brandy | July 14, 2008 5:00 PM
Posted on July 14, 2008 17:00
Dear Katie,
I think Brandy has a lot of good ideas and gives you a lot of positive feedback. Thank you, Brandy for this.
We are all hanging in there with you and you are doing the right thing. I know it was hard to go out with all this on your mind. But it did make you feel better and sometimes you just have to do it and "Fake it until you make it" Whatever-sorry I just don't have anything great and wonderful to add to what Branddy already pointed out.
You have so many smart and great friends. I thank them from the bottom of my heart for all their encouraging words. they have helped me in this whole thing and I really appreciate it from Oklahoma. A big Redneck YaHoo to all of you,
Love,
Mom
Posted by Mom | July 14, 2008 6:36 PM
Posted on July 14, 2008 18:36
Dearest Katie,
I just read the CLL Digest and thought about you when I read it. I was hoping you didn't.
After I read it, I came to your site to get updated on where you are, and I was not surprised to see your post. :-(
Yes, it was a slap of reality that you didn't need. . .but try not to focus on the "what ifs." Take one day at a time, don't look too far ahead. After all, we are only promised this day, aren't we? No sense in borrowing worries until we have to deal with them.
I know you know what I'm talking about. It's a daily thing. . .this living and surviving. And you, my friend, are going to be well! I just know it!
Keep playing with Zach, keep going for walks when you can...keep LIVING!
Love you lots,
Jean
Posted by Jean G. Barnes | July 14, 2008 9:30 PM
Posted on July 14, 2008 21:30
Katie, screw the stats. Since when are you average anyway? You're doing great!
Posted by Liz Banks | July 15, 2008 11:21 AM
Posted on July 15, 2008 11:21
Katie,
I've never met you --but I have beeb Ron and Marlene's dental hygienist for many years.
I just want you to know that you and your whole family are in my thoughts and prayers.
It is so hard to understand "WHY" we have to go through such difficult times.
You are surrounded by so much love I'm sure that is the source of your strength.
Thank you for sharing this intimate part of your life.
Posted by Gail Pierce | July 15, 2008 12:29 PM
Posted on July 15, 2008 12:29