Tuesday, December 19, 2006


Leukemia. I didn't even know how to spell that a few weeks ago. When you think 'Leukemia', don't you think about kids? Not so in all cases. I've got one in my family. My FM has Leukemia. Leukemia. When I heard that word 2 weeks ago it terrified me. I can't explain it, but now it just seems like something that's a part of my life. I watch people's expressions when I say that word and I think, "I was scared like that a few weeks ago...". I'm still scared, but its different because now I know that scared doesn't do it. I also need brave, strong, tough, supportive...

I've spent the last 2 weeks, almost every day, in the hospital visiting. Not knowing the right thing to do. Feeling helpless. Just being. There. For FM. I've decorated the room, made cookies for nurses, kept in touch w/ my FM's friends, kept family far-away up-to-date, been there for my other family members when they need a shoulder... Basically anything I can think of to keep busy so I don't need to feel what's going on.

Yesterday it got scary. 105.4 degree temp. Confusion. Obvious signs of infection. We all knew this was a possibility with the chemo, but it was terrifying.

You always hear about people who go through things like this, but you never expect it'll happen to you and your family. You know? Like imagine the person you're closest to in your family then imagine you have to pretend its OK that they're stuck in the hospital for a minimum of 4 weeks; its OK that you have to wear gloves and a mask to visit them, and imagine that you're so freaked out by the fact that you might bring a bug, maybe a slight cold or the flu, into their room that might kill them. A cold. Could kill them. Just try to imagine that. That's what we're going through.

I've turned into a freak. I'm driving my husband insane. I'm driving my friends and coworkers insane. I sit at my desk and listen to people coughing and blowing their nose and I think, "How dare they? How dare they selfishly show up to work knowing they could get someone else sick?" I'm having to force myself through all the 'steps' they talk about in a really short period of time. I finally get that its not their fault. They don't know that by exposing me to their cold they could be endangering my FM's life. I hate that I've turned into this person who sticks their finger in someone's face after they cough and demand, "Are you sick?!". I hate that I can't even go to holiday parties without thinking about what germs might be in the community food. I hate that at those parties I find myself moving physically away from people I know have sick kids. That sucks. And I've taken to picturing the germs on things. Door handles especially. I'm walking around with antibacterial gel when 2 weeks ago I was staunchly anti-anti-bacterial.

Christmas is in less then a week. I've got all my shopping done, miraculously, but it just doesn't feel right. I feel like its a sham. All of it. The "Our Year Was so Amazing!" Christmas letter, the baking of traditional family cookies and breads, the shopping for people who are thinking about other things.... My FM will be in the hospital until at LEAST January 4th. That's a long time from now. Kinda hard to think about going skiing for New Years, you know?

I don't know how to end this one. I've just got so much going on in my brain. I'm so thankful for my husband (who is a saint) and my girlfriends. I spend most of my days being that person my family can come to to cry to. And some days that's hard. Some days I just need someone to cry to. You know? Thank goodness I've got my hubby and my girls. I wouldn't survive.


Anonymous Anonymous said...

Hey Amanda! You are doing just great! Believe me. You are doing all the right things. You are at the hospital every day, you are keeping friends/family updated, you are keeping the nurses on your good side ;)
It is a normal, and smart thing to be more concerned about germs than usual. Now is a good time to be using that antibacterial gel (I'm not a huge fan of it either under normal circumstances)but every little bit helps.
I wish I had some better advice to give you, something that would help. If you have any questions that you think I might be able to answer, you can always email me : ramonais at gmail dot com

10:50 AM  
Anonymous Janet said...

I know how tough it is to be the one people can rely on. Don't forget to take time for yourself, too, ok? I'm sorry this is happening...

2:03 PM  
Blogger Carmi said...

Leukemia has, sadly, become the disease of my family. My maternal grandfather and my mom's brother had it. It's raced through every generation of my mother's family. I've got a whole extra set of tests during blood donations (weekly!) and physicals.

It'll sound weird, but I have spent much of my life preparing myself for it. If I'm ever diagnosed, it won't surprise me. I'll be comforted by the fact that I'm surrounded by a loving family, and that I've pursued my life to-date with near-reckless abandon and passion. Can't ask for a whole lot more, right?

As I read your words, I know you're doing everything you need to do to navigate this journey - both for yourself, your mom, and your husband. I hope you take a moment on occasion to thank your lucky stars that you've got the grounding that you do. And I hope everyone around you does the same thing on your behalf: they're lucky to have you, too.

8:17 PM  

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