Shortly after my diagnosis, Amara came to spend the weekend with me. After doing so, she sent out an email to a number of my friends detailing statements and behaviors that annoyed me (it was brief considering that even before cancer, I was easily annoyed and found most people annoying. Just ask my parents who have been told they're annoying for at least 15 years.). Her email began as follows:
Here are some things I would like to share after having spent the weekend with Sharon. There are quite a few behaviors that not surprisingly annoy and upset her. Now, none of us are perfect and we surely cannot help feeling a certain way, but she was clear about a few things – (1) sobbing at the site of her is not helpful, (2) asking a million questions including “how are you” annoys her, (3) feeling sorry for her makes her uncomfortable, (4) she has already told us not to tell her she is going to be ok (though I have said this in a few different ways and sometimes it is ok or it sparks a heated discussion about having faith and believing…) and (4) talking about God upsets her.
The rest of "The List" as she called it, was actually culled from a list of things to not say to a cancer patient and young women's responses from the Young Survivors' Coalition. I found much of what was on the list funny and would add to it as people said things to me that at the time I found annoying, upsetting, or more often than not, just plain stupid.
Here are some things I would like to share after having spent the weekend with Sharon. There are quite a few behaviors that not surprisingly annoy and upset her. Now, none of us are perfect and we surely cannot help feeling a certain way, but she was clear about a few things – (1) sobbing at the site of her is not helpful, (2) asking a million questions including “how are you” annoys her, (3) feeling sorry for her makes her uncomfortable, (4) she has already told us not to tell her she is going to be ok (though I have said this in a few different ways and sometimes it is ok or it sparks a heated discussion about having faith and believing…) and (4) talking about God upsets her.
The rest of "The List" as she called it, was actually culled from a list of things to not say to a cancer patient and young women's responses from the Young Survivors' Coalition. I found much of what was on the list funny and would add to it as people said things to me that at the time I found annoying, upsetting, or more often than not, just plain stupid.
Before I started treatment, the most upsetting and irritating question was "how are you?" I realize this is part of our culture and usually people say it out of habit, not genuine interest. But it just seemed so dumb. I'm pregnant with cancer. How the fuck do you think I am? The second most upsetting statement was "you're going to beat this," or "in my heart I just know you'll be fine," or some similar variation. While my friends and family want desperately to believe this, they really have no idea whether I'll be fine or not. In my opinion, such statements are totally unrealistic and fantasy and I still have a fight with anyone who tells me I'm going to be okay. Unless they can prove it, I'm not interested in their beliefs. Most of them didn't think I'd get cancer in the first place, so what the hell do they know? Finally, because many people found out about my diagnosis around the high holidays, many people told me they were praying to God for my swift and complete recovery or that they were praying that God would inscribe me in the book of life or some such variation. I have always been somewhere between an atheist and an agnostic, but now more than ever am convinced that there is either no God or he's a giant asshole. And why someone would believe that a God who could cure me didn't give me cancer while pregnant or failed to prevent the cancer is beyond me. It's totally hypocritical, in my humble, godless opinion. So if I do recover completely, it will have nothing to do with God. It will have to do with me and science.
Here's the rest of the list Amara sent out along with some of my additions, comments and reactions. The comments that people have actually said to me are in bold.
You could step off the curb tomorrow and get hit by a bus.
You gotta think positively. (I was positive and still got cancer. And positive people die from cancer all the time.)
You'll be fine. (How do you know?)
My grandmom died of that.
God gives you what you can handle. (Fuck God.)
God has a reason for everything.
I believe there's a reason for everything. (Really? Can you name one for my situation?)
What's your prognosis?
If anyone can beat this it's you.
If it's not your time, it's not your time. (Then why bother with the surgery and treatment?)
Life is not fair. (Thanks for the heads up.)
You're one of the strongest people I know and I know you can beat this. (No, actually you don't. You hope, but don't know. And I was pretty strong before I got cancer and still got it anyway.)
It's just a bump in the road. (I think being pregnant with cancer, chemo, radiation, multiple massive surgeries and living in fear of a recurrence for god knows how long is more like Mt. Everest.)
Don't worry. (Umm, why not?)
Remember Lance.
Just look at Lance. He did it. You can too.
Just think, you're almost done. (Done? I'm done?...I guess I'm done with cancer everyone. Nothing left to do. How about radiation, follow up scans for the next 5 years, residual side effects, numerous surgeries and worrying for the rest of my life about recurrence.)
If anyone can pull off the bald look, it's you. (I'm not saying I'm unattractive or anything, but I am no supermodel.)
Are you excited for your wig? (Yes. Super excited to have cancer, lose my hair and pay a million dollars for a wig.)
Do you have a cute pixie cut under your wig? (If I had a super cute short haircut, why the fuck would I need wig?)
So, was the cancer bad? (No, I had the good kind.)
This is a treatable disease. (Then why do 40,000 women die from it a year?)
How do you know if the chemo is working? (If I die, it didn't work.)
You'll be fine, you have a great attitude. (If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer sucks. What does that mean?)
If you really want to live, you will. Just never give up. When people give up, they die. (Good to know my fate is totally in my control. I really didn't want to get cancer and that worked out really well for me.)
People have also said the most beautiful things to tell me that they love me and are here for me in whatever way I need them to be. I realize that no one knows what to say in difficult (a massive understatement, I know) situations like mine and that everyone (myself included) is just doing their best. While I might find people's statement irritating at the time, I'm really just glad that I have so many people in my life who care enough to call and email me on a regular basis...even if they can't magically intuit what I'll be thinking or feeling at any given moment.
You gotta think positively. (I was positive and still got cancer. And positive people die from cancer all the time.)
You'll be fine. (How do you know?)
My grandmom died of that.
God gives you what you can handle. (Fuck God.)
God has a reason for everything.
I believe there's a reason for everything. (Really? Can you name one for my situation?)
What's your prognosis?
If anyone can beat this it's you.
If it's not your time, it's not your time. (Then why bother with the surgery and treatment?)
Life is not fair. (Thanks for the heads up.)
You're one of the strongest people I know and I know you can beat this. (No, actually you don't. You hope, but don't know. And I was pretty strong before I got cancer and still got it anyway.)
It's just a bump in the road. (I think being pregnant with cancer, chemo, radiation, multiple massive surgeries and living in fear of a recurrence for god knows how long is more like Mt. Everest.)
Don't worry. (Umm, why not?)
Remember Lance.
Just look at Lance. He did it. You can too.
Just think, you're almost done. (Done? I'm done?...I guess I'm done with cancer everyone. Nothing left to do. How about radiation, follow up scans for the next 5 years, residual side effects, numerous surgeries and worrying for the rest of my life about recurrence.)
If anyone can pull off the bald look, it's you. (I'm not saying I'm unattractive or anything, but I am no supermodel.)
Are you excited for your wig? (Yes. Super excited to have cancer, lose my hair and pay a million dollars for a wig.)
Do you have a cute pixie cut under your wig? (If I had a super cute short haircut, why the fuck would I need wig?)
So, was the cancer bad? (No, I had the good kind.)
This is a treatable disease. (Then why do 40,000 women die from it a year?)
How do you know if the chemo is working? (If I die, it didn't work.)
You'll be fine, you have a great attitude. (If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer sucks. What does that mean?)
If you really want to live, you will. Just never give up. When people give up, they die. (Good to know my fate is totally in my control. I really didn't want to get cancer and that worked out really well for me.)
People have also said the most beautiful things to tell me that they love me and are here for me in whatever way I need them to be. I realize that no one knows what to say in difficult (a massive understatement, I know) situations like mine and that everyone (myself included) is just doing their best. While I might find people's statement irritating at the time, I'm really just glad that I have so many people in my life who care enough to call and email me on a regular basis...even if they can't magically intuit what I'll be thinking or feeling at any given moment.
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