Chapter 14 Right Action for Women #2
Walked the halls. Went all the way down to the end of the carpet and thought I was a major BADASS!
Then I turned to go back and started to dance and immediately had to get a wheelchair.
What an asshole. The rest is foggy… Not sure if I looked [at my body] I think I did.
But then of course the rumor was out and everything really exploded…
Still haven’t had a BM though which is really bad.
DAY SIX
Am truly a walking fool. Discovered the dude with the sore ass [the sign on his door said “NOTHING PER ANUS” so we would walk by with random items like a pen or an apple, and wonder out loud, “Not even this?,” and the other person would say, “NOTHING PER ANUS”], hospital hallway races…
a lot of laughter. At this point I’ve looked.
It’s very sad… I look weird, deformed; the skin is numb, and feels totally different.
Also at this point it all hits me like a ton of bricks.
I still haven’t stopped hurting: Lee, all of it.
Sad. So sad… But I feel physically better.
Stronger. I can really move my arms, sort of…
can really sit up by myself. The catheter is gone as well as one of my drains.
Which really weren’t so bad. I guess everyone had the one thing that sticks out to them as the “scary” thing.
To me it was the way I looked… But the drains didn’t bother me.
We called them my grenades. Six-shooters.
I think that all of the kidding around and the laughter make this whole thing a tiny bit easier to deal with.
DAY SEVEN
Home!! I didn’t want to leave because they took me off the drip and the transition to oral was challenging for me.
For everyone I guess it’s different. Some people just push through the discomfort.
They didn’t have to dance on a broken foot.
Therefore, I am so damn sick of pushing through the pain…
Oh, and I’ve been on every kind of laxative there is, with virtually no success. The perks of opiates and surgery.
DAY EIGHT (WEDNESDAY) TILL NOW, DAY FIFTEEN
Each day easier yet harder. I’ve gone to the bathroom.
I’ve showered. But can’t shave under my arms. I’ve had sex.
Which surprises my comrades in boobs. I guess I’m lucky.
But I think I’m just a goal setter. And I’m insanely turned on by my boyfriend and really couldn’t deal.
What we all want is someone who will accept us for who we are and what we have become.
It’s sad to hear these women talk about their boyfriends not wanting to look.
Or being single and fearful of what the next person is going to think.
I’m not sure how I lucked out, but I think I have a pretty good idea.
I’VE BEEN THROUGH ENOUGH!!! The universe has kicked my ass and I deserve some good.
No, some fantastic! Some miracles, joy peace success elation passion and love.
Because really, I couldn’t take another fucking thing.
Oh, right, the boobs. So at this point, I’m pretty freaked out about tissue death and the feeling never coming back and the fact that [Dr.] Slate won’t let me keep them on the small side…
My back has a sharp weird pain (most likely my rib) as well as the front right underneath the expander.
Yuck, I hate those things. The shape is so strange and yucky.
They hurt, like as if you took a basketball and deflated it, put it under the mattress, and had [a fat person] lie on top of that.
All the while trying to inflate the ball.
My chest wall/sternum is really sore and the skin feels chalky.
My armpits are swollen. And part of my back is numb. Really this sucks.
But with all shitty things there is a counterpoint, an opposite.
And there is where the good reveals itself.
I am going to change the way young women look at breast cancer and how they can protect themselves from it.
This is my charge. I have never felt so sure of anything.
My whole world makes sense right now. Yes, I’m sad, yes it’s uncomfortable, yes I hate it.
But I have to see the blessing here. If I don’t, I won’t survive.
If I don’t I will just be one big pity party!
In 2008, when I was diagnosed, if you were a woman in a high-risk-for-cancer category, it cost upward of $3,000 to get an MRI.
It was extremely expensive to get tested for brCA.
I was fortunate that I had the means to cover such costs for myself, but I knew thousands of women didn’t have the same resources.
A patient-relations expert at Cedar begged me to get the word out.
I’m determined to do something about it.
I created a foundation called Right Action for Women, which aimed to cover the costs for such services, and in its lifetime the foundation was able to sponsor hundreds of tests.
I am extremely proud of this organization—we saved a lot of lives.
It was my way of coping with how brokenhearted I was to lose my breasts.
To this day, I feel emotionally and physically mangled by what I went through, but the organization mitigates the terrible loss I felt and feel. Helping others has a way of doing that.
But there are other ways I know I hurt instead of helped, both others and myself.
About a month after my surgery, I appeared on The Oprah Winfrey Show to talk about what I’d been through. I remember sitting onstage, all lights on me. It should have been a moment to share the truth.
“It becomes such a blessing. I talked to Melissa Etheridge [another breast cancer survivor] two days after I was diagnosed. And the first thing she said to me was, ‘Christina, this is a blessing that’s happened to you in your life. And right now, you get to start over, to change everything, the way that you deal with things in life, the way you react to things, fear can hurt you, stress can hurt you, this is the time that you have the opportunity to change the way you eat, everything you do.’”
Here’s how I feel about that interview now: it was bullshit.
Yes, Oprah was wonderful to have me on the show to promote my foundation and bring awareness to brCA—even my amazing oncologist, Philomena McAndrew, came on.
I will be eternally grateful to have had that kind of platform to help women, but I wish I’d used it differently in terms of what I said.
Frankly, I was disgusted by what came out of my mouth.
I had lied, thinking that I was being uplifting.
I was acting like Little Ms. Warrior, but that’s not how I really felt.
Worse, I’m sure I was just making women who had a similar diagnosis, and who were perhaps sitting in their homes watching me on Oprah, feel even more devastated, even sadder because there I was, talking about fucking blessings when they were going through a living hell.
I was setting up a paragon that no one going through cancer could ever rightly live up to, and for what?
To show that I had somehow overcome through steel and resolve?
During that interview, I even doubled down by talking about how “they can make some very pretty boobies,” comparing what I was facing after my double mastectomy with the hell my mother had gone through before me when she had been butchered by her cancer surgery years earlier.
The truth was, I was alone and sad and mourning something that is the most intimate and devastating of amputations, and no amount of plastic surgery can ever make up for it.
Later, I did an interview with Robin Roberts, yet another breast cancer survivor, and once again I bullshitted my way through it, saying things like my boobs would still be sticking up when I’m dead.
I was such a liar. At the end of the interview, I got up from the chair and fell against the wall, sobbing. Robin still remembers.
I recount all this to say that when I got my MS diagnosis, I was determined to do it differently.
Now I’m going to always be honest. I’m not going to lie anymore.
MS sucks. Every little stinking part of it sucks, not least of which, there’s only downhill with MS—it’s not like you can get rid of the cancer, get breast reconstruction, and move on, which was certainly how I described my journey to Oprah, Robin, and others.
I think women feel less alone, and more empowered, if someone tells them the truth.
In my mind, I see a woman, whatever she’s suffering from, saying to herself, “I’ve had a great day today, and that’s so much more powerful because I’ve had sixteen terrible days leading up to it.
” This is more meaningful than telling women that they should feel like, “I can do this” every day or “This is a blessing.” I imagine plenty of women lying in their hospital beds thinking, I feel like shit today, but yesterday was a good day, and what’s really important is that somebody hears me.
Surely that’s how people feel less alone, rather than someone talking about blessings and pretty fake boobies.
At least that’s how I’ve felt when honesty cuts through the fake veneer of “Make the most of it” that’s so often demanded of women.
Recently, I learned that my friend Clea had developed cancer. We talked on the phone about our pain and the pressure we felt as women to hide it. Our bodies had betrayed us, and it sucked. Full stop. We were on the phone for four hours, crying and laughing and trading war stories.
One day, she posted something on Instagram to the effect of, “I’m strong; I’ve got this.”
I called her the second I saw her post.
“Nope, we’re not doing this today,” I said.
“Do you actually feel strong? Do you actually feel empowered? Do you want to be a poster child for this disease?” I knew the answer was no.
“Take it down. We’re going to rework this and I’m going to help you.
And every post that you do from here on out is going to be like this: ‘Chemo fucking sucked. All my hair is gone.’”
We need to stop ramming blessings down the throats of people in distress. That’s not how we help people.
We help people by radical, thoughtful honesty.
I had my mastectomies during the summer, so we postponed filming for the fall premiere of Samantha Who?
a bit. When I did my reconstructive surgeries, I was back two weeks later.
I didn’t tell anyone I had cancer at that point.
I’ve been a private person all my life—until now, I guess. Bing bang boom, you’re welcome.
I finally told the powers that be that I was going to buy a house on the California coast to aid my recuperation.
Then, without warning, I learned we’d been canceled.
We had begun by following Dancing with the Stars, which had given us a strong lead-in and made us the number one sitcom for a time, but during the second season we’d been moved to Thursdays after In the Motherhood. Our numbers plummeted.
I was devastated. I must have cried for two months. I even went on this new thing called Twitter and tried to get a “Save Samantha Who?” movement started, but to no avail. Frankly, I just don’t think the guy who ran the studio at the time liked that it was a female-heavy show.
I loved that job. I loved those people. It was one of those rare gigs where the stars were aligned. I still stay in touch with the crew, from grips to sound people to camera operators. The day we were canceled was one of the worst days of my life, or so I thought back then.
Thank god something extraordinary was just out of sight, around a bend on that California coast.