Monday, April 30, 2012

Day 726: Sisters in Arms

When I was first diagnosed with breast cancer, my ob/gyn told me that someday, 10 years from now, I would receive a phone call from a friend. That friend would tell me that she just learned she had breast cancer, and would be in desperate need of my advice and supposed wisdom. He was trying to tell me that I would still be alive in 10 years, trying to reassure me that someday, this would all be, you know…anecdotal. The day of diagnosis, one of my close friends told me that this would be a story that I would tell someday, like all of my other stories. He said that like so many other things, cancer would be just one more experience that made me who I am, and that I would be able to tell others what it was like to go through it.

That was two years ago, almost to the day. Not ten. And I didn’t get a phone call.

I got an email.

Wow. That’s the first thing I thought. Then, Damn. Then, what bullshit. What is it? Is there something in the water? How many 35 year old women are going to be struck by this goddamn disease?

I told her I would do anything she needed, and that she could tell me what that was. Did she want to go get drunk? Talk on the phone? Text? Just get doctor referrals? Whatever, I’m game. Before a week ago, we didn’t know each other that well. I think that’s going to change.

Sometimes women ease into friendships, testing the water, figuring out what we have in common before we get into the deep subjects and conversations that make us aware of our bond as women. Sometimes, women like me find each other and we just watch sports and talk shit and have a beer. Sometimes we go bowling or go to the movies or go out to lunch or get pedicures together.

And sometimes we skip all of that, and go straight to this:

“Would you show me your scars?”

I’ll do you one better, in fact. I’ll just take my shirt and bra off and show you my breasts. And you will look closely at them, marveling at how symmetrical they are, how small the scars are, how faint the permanent sunburn is. You won’t even notice the fuzzy blue tattoos until I point them out. And then you will say:

“You have really beautiful nipples.”

And then, the conversation is really up for grabs. What is there to hide at that point? Marital problems after diagnosis? On the table. Momentary hatred of friends and family because they keep calling you and you don’t want to talk and they’re scaring the shit out of you when they think they’re helping? Lay it on me. An almost desperate desire to know what it is like to be bald? A million questions about chemo? Advice about what to include in your will? I’m listening. Your six year old thinks you’re going to die and you want him to talk to my daughter? Sounds like a play date.

And the thing is, I have no idea if I’m good at this. Do I talk too much about what it is really like? Do I use the word bullshit too liberally? Is it wrong of me to talk about my experience with cancer in the present tense, rather than the past, to acknowledge that even when it's over it ain't really over? Do you really, I mean REALLY, want to see pictures of me when I was bald and had no eyebrows and was covered in sharpie right after getting my radiation map drawn?

Did you really just remark about that picture: “oh that’s nice lighting. And you look really pretty, really natural. I suppose if that’s as bad as it gets, that’s really not so bad.”

It’s strangely, bizarrely, refreshing to me to have met someone who has an attitude about breast cancer that is so similar to mine. No interest in the fight or kicking ass. No cheerleading. No denial. No patience for doctors’ crap. No clue what it will be like, but the acceptance that it will be bad, and people will try to tell you otherwise.

I see this woman answering the phone, telling someone (the 100th person I’m sure) for the first time, holding back tears, and by the end of the conversation saying something to bring it back to normal, to make the person on the other end feel better, to comfort her.

And I remember why I screened calls for three weeks.

I see her and her husband struggling to deal with this shock to their marriage.

And I remember having to tell Gabe that while he was the crier in the family, he was not allowed to cry around me. Not about this. I was not his therapist, not about my own cancer and its effects on him.

I listen to her tell me what it was like to call her mom, and how her mom reacted.

And I remember the sound of my mom’s voice when I called her from the mammogram room, telling her they wanted to do a core needle biopsy.

I hear her frustration over how she is suddenly expected to be a breast cancer expert who knows what to do, in spite of doctors’ refusal to give her the needed information.

And I remember completely losing my shit and becoming my doctors’ worst nightmare in my early attempts to advocate for myself.

There is so much advice one can give that one never wants to actually give:

“Honey, if you don’t want a port, don’t get one. It’s their job to figure out how to do the IV. Remember, you’ve got ALL DAY to get that chemo done.”

“What did I eat during treatment? Whatever I could. Yeah, we’re supposed to stay skinny afterwards, but during treatment they will ride your ass about eating well. But if you need to survive on pudding or frosted flakes for weeks, just remember to shove some raw spinach in your mouth. That’s called ‘nutrition.’ Just eat to get through it.”

“I have a couple really nice, expensive wigs that I never wore that might look good on you. Want them?”

“People are telling you that you will have to live in a sterile bubble somewhere? Girlfriend please! I went to work, and took public transportation, and picked kids up from germ-infested daycare! You will be able to do most of the things you did before—not everything, but most things.”

“Tell your kids that it’s cancer. Don’t assume they can’t take it. They will be OK if you’re OK. And for the times when you’re not OK, well, they’ll get used to that too. They will learn coping mechanisms that other kids won’t have, and they won’t know any different.”

“Chemo will almost certainly put you into menopause. And it will suck. I won’t lie.”

“Of course you should mourn your breasts, and what’s happening to them. And no, reconstructed breasts don’t look anything like real breasts. No, there are no nipples. Go to a plastic surgeon who will show you photographs of different options, and you’ll understand what I mean. I haven’t told many people this, but when I was faced with a double mastectomy when everyone assumed I was BRCA positive, I talked with Gabe and decided I wouldn’t have reconstruction at all.”

“I don’t know if you want to hear this, but chemo was absolutely horrible for me. I had side effects my doctors didn’t know were possible. And I’m going to tell you this: I would do it again. If I can do it, you can do it. And yes, you have to do it.”

How I wish I could be the person to say yes! There really is a do-over button! You CAN go home again! But now is the time to make decisions, hard ones, and to be sad, and confused, and most of all, to be scared.

It’s so hard to be scared when you’re not used to the feeling.

There are so many things I’d like to say that I know won’t help. I want to say that it is not your breasts or your hair that make you beautiful. As one dear friend said to me right after my head was shaved, “Katy, it’s you that made that hair pretty in the first place.”

I want to tell her that while beauty is in the eye of the beholder, and that beauty as socially defined to us is overrated, in the end, beauty is beside the damn point.

I want to tell her that yes, people will pity her if they see her bald or wearing a headscarf in the grocery store. But no matter what, no matter who “knows” or “doesn’t know,” YOU know. YOU have to deal with it anyway, so who cares what other people think? That doesn’t change the reality of cancer for you.

I want to say that you will still be afraid when treatment ends, but the fear will be different. Because what you can’t see now, because it hasn’t even begun, is that treatment will end.

I want to say look at me, I’m two years in, and I seem to be doing pretty good, right? But I remember what it was like at the beginning, when I didn’t know anything about what I would face, and I know that won’t help.

I want to say the thing that I know is true about cancer, that no one else but a cancer survivor knows. When other people tell you that “it’s just hair,” they are full of shit, because they don’t have to do what you have to do. But me? I KNOW something about it and I’m going to tell you this:

It’s just hair.

Hair that defined you for over thirty years, perhaps. Hair that made men dream about you or run after you on downtown streets. Hair that made people forget your name. But damn honey, it’s just hair. And with breast cancer, hair is just a stand-in for everything else, a symbol of all of the things that you will go through that other people don’t understand.

I want to repeat what I wrote on the one year anniversary of getting my head shaved 10 months ago, about a picture that Gabe took of me holding my long, beautiful hair, the hair that had been actually attached to my head a year prior:

Maybe that's it, maybe that's what I would have told myself as I gripped the sides of the salon chair and got ready to have my head shaved: in a year you will go into the basement and find a hat box, you will open it up and take out your hair, and your husband will take a picture. The picture will be of you looking into the camera, smiling above the dead matter that had been lying in a box for a year. And you will think, better it than me.

It’s just hair, they’re just breasts, it’s just suffering, it’s only bullshit, it’s the thing you can do and that you have to do. And all of that is jack shit compared to you.

I want to say it, but I know it won’t help. So I’ll say this:

I’m sorry. Call me. Or don’t. And one day, you will get a phone call, you will need to be an ambassador for this disease, and you will do it. Even when you would rather do anything else. When you hug me goodbye, I will say the opposite of that question I often ask people, I will offer up the only true thing I can think to say:

“Good luck.”


  1. I don't even know what to comment here, but I want to tell you that once again you have blown me away. I hope you like me enough to stay in touch after LTYM, because I think you are amazing.

  2. It is bullshit... but she's got a good friend in you to help her through it.

  3. I'm glad she has you as a friend, Katy. I'm also glad that I consider you a friend too, now.

  4. What a wonderful statement. I'm a two year-survivor, and I get that phone call and email a lot. So much that I started my own blog (and book) to share all the hints and tips I learned so maybe I could help someone else who hears those horrifying words and now lives with a big, fat, bald pink elephant in the room. Good luck to you, Katy and everyone else.
    My blog is at