January 13th, 2013 §
Originally written on January 30, 2009 (the two year anniversary of my surgery).
……………………………..
I had two surgeons that day:
one just wasn’t enough for the job.
The surgical oncologist would take away,
the reconstructive surgeon would begin to put back.
Before I headed off into my slumber,
I stood as one marked me with purple marker.
He drew,
he checked,
he measured.
And then a laugh,
always a laugh to break the tension:
Surgeons must initial the body part to be removed to ensure
they remove the correct one.
But what if you are removing both?
How silly to sign twice,
we agreed.
And yet he did,
initialing my breasts with his unwelcome autograph.
The edges of the yellow fabric measuring tape he used
had purple fingerprints up and down their sides;
use after use had changed their hue.
And now it was my turn to go under the knife –
a few more purple prints on the tape.
I got marked many a time by him that year.
Endless rounds of
purple dots,
dashes,
and lines
punctuating my body
with their strange, secret blueprint
only those wearing blue understood.
We stood in front of mirrors
making decisions in tandem
as to how my body should and would take new shape.
Two years today and counting.
Moving forward.
Sometimes crawling,
sometimes marching,
and sometimes just stopping to rest
and take note of my location.
Numb inside and out,
but determined.
Grateful,
hopeful,
often melancholy.
Here comes another year
to put more distance
between
it and me.
Let’s go.
October 18th, 2011 §
For those of you who missed it yesterday, click here to the USA Today piece that Liz Szabo did about the decision for some women with breast cancer to have a mastectomy.
Everyone was so supportive in sharing publication day with me… thank you. The enthusiasm from Facebook and Twitter friends was truly touching.
The kids feel like celebrities! The photo on the cover page of the Life section was huge and the photographer captured a great laugh with the kids. The children were so patient during the 1.5 hour photo shoot.
I’m still working on a big post with more about the subject of mastectomies for breast cancer. I promise to have that up as soon as I can.
The response was overwhelmingly positive but there were a few criticisms of my decision. Here is what I reply:
I don’t believe that my decision to have a double mastectomy was a guarantee that my cancer won’t come back. There was much I could not control about cancer; some of that uncertainty still remains. However, how you treat your cancer, live with it, and monitor it are things you can control.
The shame is that when observers (many whom have no direct experience with cancer) decide to be critical of people with the disease, survivors may be afraid to tell their stories. Cancer awareness– true awareness– can only happen when men and women with breast cancer feel comfortable enough to talk about their experiences, their choices, and their disease without fear of being challenged.
I will continue to tell my story.
June 30th, 2011 §
It’s not that I didn’t like my right breast.
It hadn’t really ever done anything “bad” to me, except for the few times when it wouldn’t keep up with the milk production of the left one during the months when I nursed my children.
I didn’t harbor any negative feelings for it. In fact, I didn’t think about my breasts much at all except to chuckle at the sagging that inevitably comes with middle age and three pregnancies.
But all of that changed with four words: You have breast cancer.
The cancer was in my left breast: I needed a mastectomy. But what about the “good” breast?
Note the popular lingo: the non-cancerous breast quickly becomes tagged as the good one– like a good child who behaves and does what it’s told, the non-cancerous breast has faithfully done its duty and stayed healthy.
The left breast?
Well, that’s the traitor.
I had a decision: what would I do with the right breast?
Keep it?
Toss it out in biohazard trash?
With four words, that part of my body became a liability. I didn’t want that breast anymore, thanks. I’d rather have no breasts than one. Mentally, it was much easier to me to part with both, not live the rest of my life in fear of what might be lurking in that tissue.
To be clear, surgeons and oncologists explained that in their opinion, my chance of getting cancer in the right breast was no higher than my chance of getting breast cancer in the first place; I wasn’t necessarily at increased risk of breast cancer on the other side.
But:
I had already been a statistical anomaly.
I had gotten cancer at 37.
I was BRCA-1 and 2 negative (but didn’t know it at the time).
In my mind I thought:
Go ahead and tell me that, but I don’t believe you.
And so I heard their words.
I understood their words.
But I didn’t believe them.
And time proved me right.
I opted for bilateral mastectomies. And when the pathology came back, there was abnormal tube proliferation and some cell dysplasia. Things were awry in my right breast even though nothing had shown up on the mammogram.
Now, yes, eventually I would have found the problems when the cell proliferation got large enough to be detected on a mammogram or MRI. And maybe my chemotherapy would have gotten these cells anyway.
But are you really going to take that chance?
I wasn’t.
Body parts become liabilities.
My perspective about my body has changed so much in the last four years. My body itself has changed so much too.
I’m not exaggerating when I say that, like aging itself, the side effects of removing my ovaries one year after my mastectomies has changed almost everything about my health as I know it.
I went to the kitchen just now and pulled out my binder of cancer records to double-check my pathology report to write this blogpost.
And there it says, quite plainly, that my cancer was 1 mm from the deep margin (chest wall).
One millimeter.
A hair’s diameter.
A grain of sugar.
It always takes my breath away.
A millimeter.
So many people link their happiness to pounds, or inches, or dollars.
Me?
I think part of my future might hinge on that millimeter.
I’m counting on it.
And moving forward.
May 1st, 2011 §
In the weeks before my surgery, I looked at pictures of double mastectomy patients on the Internet. I Googled “bilateral mastectomy images before and after” thinking I was doing research. I thought I was preparing myself for what was coming.
In reality I was trying to scare myself. I wanted to see if I could handle the worst; if I could, I would be ready. My reaction to those images would be my litmus test.
Some of the pictures were horrific. I sat transfixed. I looked. I sobbed. I saw scarred, bizarre, transformed bodies and couldn’t believe that was going to be my body.
Days later, when I met my surgeon for my pre-op appointment he said, “From now on, don’t look at pictures on the Internet. If you want to see before and after pictures, ask me– look at ones in my office. You can’t look at random pictures and think that’s necessarily what you are going to look like.”
All I could do was duck my head in an admission of guilt. How did he know what I’d done? I realized how he knew: other women must do this. Other women must have made this mistake.
The aftermath is terrible to me though not in the ways I’d anticipated. I have no sensation in most of my chest. I never will.
A major erogenous zone has been completely taken away from me. Yes, I have new nipples constructed, but they have no feeling in them; they are completely cosmetic. The entire reconstruction looks great but I can’t feel any of it. It does help me psychologically beyond measure to have had these procedures though.
Here I sit, two gel-filled silicone shells inside my body simulating the biologically feminine body parts I should have. And sometimes that thought is disturbing.
To be clear: I don’t regret having them put in. I’ve never regretted that. It was a decision I made, and made deliberately. I knew that reconstructing my breasts was the right decision for me. I’m getting used to them– I’m almost there.
I definitely don’t remember what my breasts looked like before. I only remember these.
I once asked my plastic surgeon to see my “before” pictures a year or two after my reconstruction was over. You know what? My “before” breasts didn’t look so great. In my mind they did.
In my mind, everything about my life before cancer was better.
But that’s not the truth.
My mind distorts the memory of my body before cancer. Then forgets it.
My mind distorts the memory of my life before cancer. Then forgets it.
With time, I can get used to a new self.
It’s like catching my reflection in the mirror: only lately do I recognize the person staring back at me.
For over a year the new hair threw me. It’s darker than I remember it being before it fell out. It’s shorter than it was before, too.
And the look in my eyes? That’s different also.
I just don’t recognize myself some days.
Sounds like a cliché if you haven’t lived it.
But it’s true.
April 15, 2009
January 10th, 2011 §
January 30, 2009
I had two surgeons that day:
one just wasn’t enough for the job.
The surgical oncologist would take away,
the reconstructive surgeon would begin to put back.
Before I headed off into my slumber,
I stood as one marked me with purple marker.
He drew,
he checked,
he measured.
And then a laugh,
always a laugh to break the tension:
Surgeons must initial the body part to be removed to ensure
they remove the correct one.
But what if you are removing both?
How silly to sign twice,
we agreed.
And yet he did,
initialing my breasts with his unwelcome autograph.
The edges of the yellow fabric measuring tape he used
had purple fingerprints up and down their sides;
use after use had changed their hue.
And now it was my turn to go under the knife–
a few more purple prints on the tape.
I got marked many a time by him that year.
Endless rounds of
purple dots,
dashes,
and lines
punctuating my body
with their strange, secret blueprint
only those wearing blue understood.
We stood in front of mirrors
making decisions in tandem
as to how my body should and would take new shape.
Two years today and counting.
Moving forward.
Sometimes crawling,
sometimes marching,
and sometimes just stopping to rest
and take note of my location.
Numb inside and out,
but determined.
Grateful,
hopeful,
often melancholy.
Here comes another year
to put more distance
between
it and me.
Let’s go.
December 30th, 2010 §
One of my favorite romantic movie moments occurs between Denys (Robert Redford) and Karen (Meryl Streep) in the movie Out of Africa. The two lovers are out in the African desert at a fireside camp. Karen leans her head back into Denys’s hands. He washes her hair gently, then cradles her head in one hand and pours water from a pitcher, slowly and gently rinsing the soap from her hair after he’s done washing it. It’s a tender moment, to me utterly soft and sensual.
Before I left the hospital after I had a double mastectomy, the staff told me I might not be able to lift my arms over my head. With both sides affected, they said, I’d likely be unable to wash my own hair.
Recovery is slow in the week after surgery. A clear thin tube (like aquarium tubing) is literally sewn into a small hole in the skin under each arm. It carries excess fluid away from the mastectomy site as it heals. Fluid is collected into a small “bulb” and measured every few hours. After certain medical criteria are met, the drains are removed, the incisions sewn up, and then you can finally take that longed-for shower. Eight days after the surgery I received the all-clear. As any mastectomy patient will tell you, the day you get your drain(s) out is a great day.
Only then did I try to lift my arms. And hurt it did. I tried to shrink down into my body. I tried to be a tortoise withdrawing my head back inside my shell, shortening my height so I wouldn’t have to lift my hands so high to reach my hair. It was a painful challenge. I worked up a sweat trying to get my fingers to touch my scalp. I knew it was a questionable proposition. But I thought I could do it.
I thought about that scene— that romantic tender scene from Out of Africa. And I started laughing. I laughed and I laughed and tears came down my face. That cry hurt. It was one of those “I’m laughing and I’m crying and I’m not sure if it’s funny or sad or both and I don’t want to think about it so I’ll just go with it and I hope I’m not on Candid Camera right now…”
I was laughing at the absurdity of it. Here I was. It was my chance to get Clarke to wash my hair. My big fantasy moment. I was going to be Meryl Streep and he was going to be Robert Redford and he was going to wash my hair. Except I couldn’t move without pain. And I certainly wasn’t feeling romantic. I had just had my breasts removed. And I had these weird temporary breasts (tissue expanders) in their place. And my chest was numb. And my underarms hurt from having tubes in them for a week.
Because I hadn’t properly showered I still had purple Sharpie hieroglyphics all over my chest. And I had no nipples. And I had big scars and stitches in place of each breast. And a small angry scar with stitches under each armpit where the drain had just been removed. Let me tell you… this was clearly not how I envisioned beckoning my loving husband to come make my little movie scene a reality.
Now, don’t get me wrong. Had I called him from the other room, he would have done it in a second. He would have been there for me, washed my hair, and not made me feel the bizarre, odiferous (!) freak I felt at that moment. And I would have loved him for it. But I did not want him to see me like that.
In that moment I had a dilemma. What kind of woman was I going to be?
What kind of person was I going to be with this disease from that moment going forward?
I was going to push myself. Do it myself.
I wasn’t going to be taken care of if I could help it. I knew I was going to have trouble asking for help, have trouble accepting help. I knew these things were going to be necessary. But I also knew they were going to cause me problems. That’s the kind of person I am.
I knew asking for and accepting help were actually going to make me feel weaker than I was already feeling. And it was only the beginning. I knew these actions were going to make me feel weaker than I knew I was going to get. I wanted to do everything myself for as long as I could. That was what was going to make me feel alive: doing it myself.
I am not sure I did the best job washing my hair. I probably missed a spot or two. But I did it. And I didn’t ask for help.
Granted, it was something small.
But in that particular moment, on that particular day, that particular act gave me a feeling of pride as big as anything else I could have possibly accomplished.
a postscript: I wish I had been more accepting of help in the early days. I wish I had not seen it as a personal “weakness” the way that I express here. I don’t want to change what I wrote then, but I do want to say that I don’t think I was right to push myself so hard. If I had it to do over again I would accept help more often; maybe not for the hair-washing, but definitely for other tasks that I should have outsourced. I have learned from my experience.
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