I'm Walking, but I Won't be Wearing Pink

I am participating in the New York City Avon Walk for Breast Cancer this year.  It is a 2-day/39.3 mile walk in October to benefit the Avon Foundation Breast Cancer Crusade, a 502(c)(3) public charity.  Their mission is to provide access to care for all women and to work toward finding a cure.

You may already know that I'm not fond of the color pink and its association with breast cancer.   Breast cancer and breast cancer treatment is not pink, and certainly not rosy.  But, pink raises money. And, I am very interested in raising money to find better, more effective treatments and ultimately a cure for breast cancer.

So I'm walking, and I'm raising money, but I won't be wearing pink.

I am walking because I can.

I am walking, because I am lucky that my cancer was detected relatively early.   I am walking, because twenty months after diagnosis I am healthy and strong enough (knock on wood) to walk 39.3 miles.

I am lucky, and I am grateful.

And, now it is my time, it is my privilege, to help raise money for breast cancer treatment and research.

Every three minutes a woman in the United States is diagnosed with breast cancer.  In the time that it takes for you to read this blog post, a woman will receive a breast cancer diagnosis.  Those are awful and unacceptable statistics.

I know five women who have been diagnosed with breast cancer since I was--only 20 months ago.

And, as I write this it is still hard to believe and harder to write that I have an old college friend who has recently died from metastatic breast cancer.

Some days it feels like a big, fat pink plague.

If you are at all interested, you can make a donation to the Avon Walk for Breast Cancer online by clicking on the following link, which will bring you to my personal page.

http://info.avonfoundation.org/site/TR/Walk/NewYork?px=6147606&pg=personal&fr_id=2070

If all of this fund raising seems too big and corporate and "pink" for you, but you are still interested in finding better treatments for breast cancer, please consider the following fund.  My college friend's husband has set up a fund in her name, The Maite Aquino Memorial Fund.  It is a perpetual fund to support efforts to cure breast cancer.  The Fund will focus on specific research programs that seem to have a high impact on solving the problem of metastatic breast cancer. It is a very targeted, specific fund, and I promise you every penny will be well spent.

http://www.maiteaquino.org/


Maite and I never had a chance to talk about our breast cancer, but somehow I have a feeling that she wouldn't be fond of all the "pink" either.

Some Days . . .

it feels like cancer really is in my rear view mirror.

Camp Visiting Day--July 2011

Not the "Bar-bra"

A few months ago, I wrote about the challenges of finding a good bra for my post unilateral mastectomy, reconstructed body.  One breast needs a lot of support; the other needs none.  I couldn't find a bra that made me look reasonably symmetrical and felt comfortable too.

Malia Mills (http://www.maliamills.com/) makes amazing bathing suits that do the trick.  I bought a tankini, and I bought one of her bikini tops to wear as a bra.  The tankini and bikini are both super comfortable, and my body looks symmetrical.  But, the bikini top isn't seamless.  So while the Malia Mills bikini tops are amazing bathing suits, they're not always perfect as bras.

For yoga and sport tanks and bras I have always loved lululemon athletica  (http://shop.lululemon.com/).  They make the most supportive and comfortable tops.  Most of their tanks and bras have mesh liners with pockets for removable cups.  My favorites are the "Light Up Tank" and the "Ta-Ta Tamer."  But, I can't wear yoga tanks and sports bras everyday (or can I?).

I wanted to work with a bra manufacturer to design the perfect bra for women like me--the "Bar-bra," I would to call it.  But, here's the thing--the "Bar-bra" already exists.

It's name isn't Bar-bra.  It's "Lara."

I didn't look for bras in the boutique at the Evelyn Lauder Breast Center at Sloan Kettering.  Because, well, the boutique screams BREAST CANCER.  There's pink everywhere.  Every and any item that could possibly have a pink ribbon does--hats, bracelets, scarves, pens, books.  You name it; it has a pink ribbon or pink something on it.

Maybe I didn't go to the "pink boutique" because I just wanted to be like the old me and bra shop in places the old me would have shopped.  But, this body is not my old body.  This body had cancer and has been reconstructed and radiated.  This body is asymmetrical and some days still stiff and sore.  And, this body needs a little more help than the ladies and the bras at Nordstrom can give.

After my last appointment with my breast surgeon I broke down and went into the "pink boutique."  And, the professionally certified bra fitter (that's her title, and she deserves it) introduced me to "Lara."  "Lara" (http://www.amoena.com/us/Products/Lingerie/Feel/Lara.htm) is the best bra I have found in my year long search for an attractive, comfortable bra for my unilaterally reconstructed body.

"Lara" is sold online and at the Evelyn Lauder Breast Center at MSKCC.

And, I love "Lara." (Although, I still think "Bar-bra is a better name).  

 "Lara" by Amoena

Looking good.  Healing good.  Feeling good.




I'm not a spokeswoman for Malia Mills or lululemon or Amoena.  I love their products and want to share them.

If you know someone who could benefit from or would like to read this blog, please forward the link to them.beingmemovingforward.blogspot.com

Breast cancer alone can be terrifying, but the breast cancer community is empowering.

Betty Ford, Will You Be My Cancer Twin?

When I was first diagnosed with breast cancer, I wanted very badly to find someone who had my type of cancer (estrogen receptor positive/progesterone receptor positive), my stage cancer (2A) and my cancer treatment (unilateral mastectomy, eight chemotherapy treatments, and 28 radiation treatments).  I thought that if I found someone who was my cancer twin, and she survived and was doing okay, I would be okay too.   

I didn't find an exact cancer twin.  There are a lot of women with breast cancer, but there are also a lot of variables.  So, I have no twin.  But, if I could choose a twin, I would choose Betty Ford.

Betty Ford, breast cancer's patron saint, was diagnosed with breast cancer in 1974.  She had a mastectomy, lymph node removal (She had three affected lymph nodes.  I had three affected lymph nodes.) and two years of chemotherapy.  And, Betty Ford went on to live to 93.  That's the kind of cancer twin I was looking for.

But, more than be her cancer twin, I want to be as honest and optimistic about breast cancer as Betty Ford.  By being so open about her disease, Betty Ford got people talking about breast cancer.  Betty Ford helped women to know that breast exams are important, and cancer is not a life sentence.  

She advised women facing breast cancer treatment "to go as quickly as possible and get it done."  She also said, "once it's done, put it behind you and go on with your life."  (Sounds a little like, "put it in your rear view mirror and move forward.") 

I'm working on it, Betty, I'm working on it. 

Rest in peace, First Lady.

It's (Still) All About the Hair

I know three women who have been diagnosed with breast cancer since I was (three women in eighteen months).  When we talk about cancer, first we talk about our doctors and where we were treated.  And, then they ask the "important" questions:  when did I stop wearing my wig?  And, when did my eyelashes and eyebrows grow back?  

It's (still) all about the hair.

So here it is, on the anniversary of my last day of chemo (my first chemo-versary), my hair before, during and after chemotherapy.  

February 2010
The day before my mastectomy.  A month before chemo.

April 2010
The curly hair wig.  My hair started "releasing" exactly two weeks after my first chemo treatment.
I had it shaved off and had my second "wig fitting."

July 2010
Three weeks after chemo (wearing the straight hair wig).
My eyebrows lasted for a long time.
Everyday I gently washed and patted my face dry--
I didn't want to disturb any of the lashes.
By late July I had maybe three eyelashes/brows left.
Elizabeth's first words when she saw me at camp
visitingday were,"your eyes look freaky."  They did.

August 2010
Six weeks after the end of chemo.
I had fuzzy hair under the wig and the beginning of fuzzy eyebrows and lashes.

October 2010
I stopped wearing the wigs two months after chemo.
Three months after chemo--soft downy hair and furry eyebrows and lashes.

December 2010
Five months after chemo--gray hair, full eyelashes and brows.

January 2011
Seven months after chemo--my first (semi permanent) hair color.
Thank you, Michael Casey @ Sally Hershberger.

  

February 2011
Eight months after chemo--lots of chemo curls.

April 2011
Nine months after chemo--more curls.

June 2011
Close to a year after to chemo.
Lots of curls--still no clue what to do with them.
 

July 2011  Third semi permanent hair color.

 

So a year after chemo this is what I know--cancer is not all about the hair.  Cancer is about one day at a time.  Cancer is about showing yourself and your kids that when life throws you a curve ball you find the best doctors, get them on your team and hit that ball out of the park.  Cancer is about getting yourself to all of your appointments no matter how sick you feel.  Cancer is about just getting through it all. 

But, cancer is also about the hair.  It just is.  When I was being treated, I didn't feel anything at all like me.  I can't even describe how much not-like-me I felt.  So, it would have been nice if when I was getting ready to swing at that curve ball, I could have looked a little more like me--and not a freaky, snake-eyed GI Jane.   That's why it's all about the hair. 

I know that I say I hate the curls and the barrettes and all of the hair products.  And, I do.

But really, curly or not, this hair is mine.
 



If you know someone who could benefit from or would like to read this blog, please forward the link to them.beingmemovingforward.blogspot.com

Breast cancer alone can be terrifying, but the breast cancer community is empowering.

What I thought. What I know.

About diagnosis . . .

I thought that self exams would help me detect breast cancer early.
I know that my breasts were cystic making it very hard to find a tumor.  My 40 year old routine mammogram couldn't even detect my tumor.  My radiologist had me follow up my mammogram with a sonogram.  Then she saw the 1.7 cm tumor and an enlarged lymph node.  And, even then, when I knew it was there and exactly where it was,  I still couldn't feel the tumor. 


I thought that nursing two children twenty months each and leading what I thought was a healthy lifestyle would help prevent breast cancer.
Not true for me.

About treatment . . .

I didn't think losing my hair would be such a big deal.  I was very matter of fact.  It would just be necessary, temporary and not such a big deal. 
It turned out to be a very big deal.  For me, for my kids, and did I mention for me?
A. Very. Big. Deal. 

I thought that I would "bounce back" and feel like myself a few days after every chemo treatment [after all, Robbin Roberts of Good Morning America (and many other women) worked through chemo treatment].
I know that I definitely got some energy back a few days after each treatment--but bouncing, no, there was no bouncing back.  I was running on pure "chemo adrenaline" last year.  

I had no idea how, but I thought that Jay and I would have to manage all of the details of our life on our own while I went through treatment.
My friends carried my family and me through last year. With carpools, childcare, meals, phone calls, and visits (and did I mention childcare?).  
They told me what they would do for me before I knew what I needed.  I am indebted to them.  I know that we could never have done it alone.

I thought that reconstructive surgery reconstructed.
I know that reconstructive surgery does a great job--but there is no way to recreate a 40 year old breast and nipple.  Yes, I said nipple.  Radiation treatment damages the skin and vascular system in the radiated area and makes nipple reconstruction unsafe and almost impossible.  So, I am asymmetrically reconstructed and will someday have a tattooed nipple.  Yes, I said tattoo. 

I thought that after radiation was finished and the external burn (like a very bad sunburn) healed, I would be done with all of the physical healing from my cancer treatment.
I know that was only the beginning.  My reconstructive surgeon said to expect the internal scarring and healing from radiation to last about 6 months.  My last radiation treatment was October 1, 2010.  But, every day I wake up, and my left side is still tight and sore from the scar tissue healing.  I know it probably, to some degree, will always be.

I thought it that people diagnosed with and treated for cancer wanted and needed privacy and time to rest.
I know that what worked best for me, what got me through my hardest days, was getting cards and phone calls and messages from people who were just checking in.  No response or phone call back required.  That was the best.  I knew that people were thinking of me and needing nothing back in return. 

About life after treatment . . .

I thought that when my treatment was over I would be paralyzed by a fear of recurrence.
I know that I'm vigilant (some might say obsessed) about preventing a recurrence--but not paralyzed.  Alright, some days I'm still a little paralyzed.

I thought that breast cancer was highly curable.
I know it is--but life expectancy is greatest with early detection.  Late stage breast cancer is often incurable and terminal.

I thought that a year and half after diagnosis, cancer would be completely "in my rear view mirror."
Some days it is.  But, other days it feels like it's still sitting right next to me.   





If you know someone who could benefit from or would like to read this blog, please forward the link to them.beingmemovingforward.blogspot.com

Breast cancer alone can be terrifying, but the breast cancer community is empowering.

A Grand Gift, A Grand Girl

My senior year in college I lived in an apartment building with eleven other women.  Three apartments.   Four women each.  Most of them had been friends since freshman year.  I was new to the group--introduced by a friend who was one of the twelve.  We lived on Grand Boulevard, and they were the "Grand Girls" before I got there.  But, it was grand to be a Grand Girl for one year.

Senior year, second semester was a little like being in a holding pattern.   We had taken the GRE's and LSAT's, sent out our graduate school applications, and were planning our next steps--law school, nursing school, graduate school, jobs.  In between going to classes, waiting for graduate school acceptances and planning for life after college, we hung out in each others apartments and talked about travel after graduation, Spring Break, "thirtysomething"(every Tuesday night at 10), going out, hair and lipstick.

One lazy day, a few of us were sitting at the kitchen table, doing the Times crossword puzzle, and reading magazines.  One roommate reading People magazine asked if we thought she could carry off the Demi Moore "Ghost" hair cut.  Lots of hair talk ensued.  We started talking about who in the house could and couldn't carry off the pixie cut--bone structure, hair texture, all of the key features that would factor into a successful pixie cut.

No one wound up getting their hair cut like Demi Moore.  There was a lot of hair going on in those apartments in 1991.  We grew up in the eighties.  No one was voluntarily cutting off their long locks.

I've thought a lot about that roommate and the pixie cut conversation this past year--in my year of hair. It turns out that after four months of chemo I could carry off the pixie hair cut.  I hated it, but I carried it off.

But, what I didn't know was that the same roommate who first asked if she could carry off the Demi Moore hair cut was also sporting the pixie cut--also, not by choice.  We had been out of touch for over ten years, and we were both being treated for breast cancer.  And, neither of us knew about the other.

My old, dear friend who had a quick wit, sharp intelligence and great style (who taught me, among many other things, about the beauty of the Russian literature and the power of a good lipstick) had been diagnosed with breast cancer eight months before I was.  We hadn't spoken in years, and she and I kept in touch with different women from the original house of twelve.  We both had surgeries and endured chemo.  And, we chose and wore wigs without knowing about each other's cancer.

By the time I went public with my breast cancer and started posting my blog to Facebook I was already done with my treatments.   I had "N.E.D," no evidence of disease.   But, it seems my old, dear friend was still being treated--aggressively.  I know that she was fiercely private about her stage of cancer, her treatment and her prognosis.  I know very little about her course of treatment.  But, it was aggressive and continuous.   I was done, and she was still being treated.

I reconnected with some of the Grand Girls this year through Facebook.  They found me, and they found my blog.   They found out I had cancer.   Those girls, those Grand Girls were quite grand.  They decided not to tell me about our other roommate with breast cancer.  Because, they decided, I had a hard year; we had been out of touch for so long; our roommate was so private; and, our breast cancer stories were very different.  They definitely struggled with the decision, but in the end they didn't reconnect the two roommates with breast cancer.  Until last week.

Last week, a roommate called me to tell me that my old, dear friend was very sick and was dying.   It was too late for me to call her. 

At first I was angry and so sad.  I was fall-to-the-floor-crying sad that we didn't have the chance to reconnect.  We could have been sick and fighting and scared and bald together.

Then I thought, if I had known that my old, dear friend was dying of the same disease that I was fighting could I have walked the walk from Grand Central to Sloan Kettering for sixteen weeks?  Could I have gotten myself to all 28 radiation appointments?  Could I have laughed and joked with my kids about hair balls and wigs?  Maybe not.

It turns out those Grand Girls gave me a gift.   They let me keep believing that a fortysomething year old woman fights and survives cancer.  They protected me until they couldn't anymore. 

Yesterday, a roommate called to tell me our friend had died.

My 42 year old, dear friend died of the disease that we were both fighting all of last year.

Rest in peace, my dear friend.