Real Survivors Do Wear Pink

I walked in the Avon Walk for Breast Cancer this weekend, and as it turns out, I did wear pink.

I expected to be surrounded by seas of pink and pink merchandise.  I expected to be overwhelmed by the pink.  I'm critical of the pinkification of America.  I worry that linking pink to breast cancer makes people think that breast cancer is rosy.  And, I worry that people will think that there is a cure for all breast cancers and forget about the many women living with and dying from metastatic breast cancer.

This is what I learned this weekend.  Pink can be hot.  Pink can be fiery.  And, pink can be unifying.

There were no pink toasters or pink yogurt lids or pink teddy bears.   And, there were no rose colored glasses put on cancer this weekend.

There were 13,000 women and men who walked 39.3 miles over 2 days and raised over 8.4 million dollars.

I walked with my friend, Nadine, and with the other walkers we walked 26.2 miles the first day.

On the Brooklyn Bridge--at "Mile Chai"

It turns out that the hardest part was not the pink and not even the actual walking.  (Although, miles 22-26.2 on day one were killer).

My Cheering Crew at Mile 22

It turns out the hardest part of the Walk was reading the tee shirts that people had made in memory of women who had died of breast cancer.

One woman wore a shirt with a picture of a friend who had died this week and was being buried Saturday while we walked.  Another group of women wore tee shirts in memory of a woman who died when she was 21.  Those were the hardest parts.

The easiest part was the pink.  Pink was strong.  Pink made the walkers look like a unified group walking to end breast cancer.  It turns out when used responsibly, pink can be powerful.

We ended the first day at Randall's Island where Avon had set up a Wellness Village with doctors and chiropractors and foot massages and meals and showers.  Many walkers stayed on Randall's Island overnight in tents.

Pink Tent City at the Wellness Village

Nadine and I took the shuttle bus and spent the night at the Sheraton.

I'll walk.  I'll raise money.  I might even wear pink.  But, I'm not sleeping in a tent after walking 26.2 miles.

We had beautiful weather again on day two.  And, 13.1 miles was a breeze after 26.2.  We shuttled up to Randall's Island and started walking again.

We walked with other survivors, big corporate groups, families, friends and so many volunteers.

This guy has been volunteering for 12 years

We walked, because we could.  And, we did.  We crossed the finish line around one o'clock at Pier 86.

At the Finish Line

These are the facts:  Every three minutes a woman will be diagnosed with breast cancer.  One in eight women will be diagnosed with breast cancer in a lifetime. 

These are also the facts:  In two days, 13,000 people walked 39.3 miles together to raise 8.4 million dollars to support women in need of treatment and to support breast cancer research.

And, this is also a fact:  It turns out that real survivors do wear pink.  When we crossed the finish line, Avon gave all the survivors hot pink tee shirts.  I had walked 39.3 miles.  I had raised over $8,500.

Somehow wearing pink felt okay.

That's me in pink with the Intrepid* behind me.

intrepid:  characterized by resolute fearlessness, fortitude and endurance




Many thanks to everyone who supported me in the Walk.  I couldn't have done any of it without you.

39 Days to 39.3 miles

In 39 days I will be walking in the 39.3 mile Avon Walk for Breast Cancer.  I've been training (and I've been shopping for my anything-but-pink walking gear).  But, I'm taking a minute for a little shameless fund raising.  I have set my personal goal for the Walk at $5,000.  I am overwhelmed by the generous contributions many of you have made.  Thank you.  Because of you, I am close to my goal, but I'm not there yet.  And, quite honestly, I'd like to surpass my goal. 

If you are at all interested, and if you can, please 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

Forgive the repetition, but if all of this fund raising seems too big and corporate and "pink" for you, please consider the following fund, The Maite Aquino Memorial Fund.  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/

Elizabeth asked me why I was walking in the Avon Walk if they already have a cure for breast cancer.  Jay and I have always told Elizabeth and Andrew that my breast cancer was treatable and curable.  And, I would be fine.  Dying of breast cancer is not an option in their heads.

But, she asked, and I took a deep breath and answered.  I told her that, sadly, not all women survive breast cancer.  She seemed ready to hear the truth.  I wanted her to hear the truth (at least part of the truth) from me.  I told her that older women with weakened immune systems infrequently die of breast cancer.

I think that was enough for her (and for me) for now.

Camp Visiting Day--July 2011

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.
 



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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.   





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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.

Pet Scan

We have a dog, a small white dog, named Sophie.  She's 15 years old.  Jay and I joke that she is our first (and most hairy) child. 

She an old girl.  She sleeps most of the day, and she can't hear very well.  And, she has cataracts.

So she doesn't bark at the mailman.  She's not afraid of fireworks.  She can't hear any of it.  But, she does still beg for treats, likes have her ears scratched and naps on the couch no matter who else might be sitting in "her" spot.

Elizabeth and Andrew have always peacefully coexisted with Sophie.  She's more like a cat than dog.  She's very independent, and she likes to have her own space.  She's not very interested in them, and they aren't very interested in her.  For the most part, Sophie does her own thing. 

But, last year Elizabeth became a little more attached to Sophie in that "we all have to stick together" way.  Sophie started to nuzzle Elizabeth to have her ears scratched, and Elizabeth enjoyed being Sophie's "go to" person. 

I spent a lot of time on the couch watching the "Real Housewives" of anywhere last year.  Sophie would lay on the couch with me, and I would l think, "Old girl, don't die this year--just give us one more year."

And, she did. Sophie (and I) made it through last year.

A few weeks ago Sophie got sick.  She had a stomach problem, some bleeding, and no eating.  And, I though, "This is it.  She held up her end of the deal and made it through last year. And this is it."

It turned out the stomach and bleeding were easily treated with a visit to the vet and antibiotics.

So Sophie is fine.  But still 15 years old.  Our vet says that her heart and lungs sound good.  But, I wonder, for how much longer?

After a year of putting the blinders on, being strong, fighting cancer and talking about not dying, I am realizing that I'm not in control of protecting my kids from anyone or anything dying.  Oh dear.

Sophie, old girl, just give us one more year.


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

A Week in the Life

Once upon a time my body was cancer factory.  And for that one betrayal, that one indiscretion of my immune system, this body is going to be scanned and probed and scoped for the rest of my life.


This is what last week looked like:

Thursday, May 12
Standard, every six month, well visit with my breast surgeon (who I love as much as Jay) and a unilateral mammogram at Sloan Kettering.   (Unilateral because the implant side does not get a mammogram.  No breast tissue.  No mammogram).  Mammogram results:  "normal mammogram."

Monday, May 16th
Initial consult with gastrointerologist.   I got all of the instructions for the pre colonscopy cleanse and the go ahead to schedule the actual colonoscopy at my "convenience."  Moving right along . . .

Wednesday, May 18th
Follow up pelvic sonogram to continue to monitor my ovarian cysts.  I never had ovarian cysts before cancer, but these cysts (I still have two) continue to look normal "nothing to sorry about."

Thursday, May 19th
Phone call with my gynecologist.  The ovarian cysts look normal.  But, because of my "history," she would like me to have another pelvic sonogram in eight weeks.  Just for the record, that would be a very thorough internal and external sonogram of every organ in my pelvic region.  Did I mention "thorough?"


By coincidence all of the appointments were scheduled in the same week.

A one week long reminder that I still lead an over examined life. 

I say scan and probe and scope away. 

I'm all for the over examining.  And, the normal results aren't bad either.



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.

Happy (very happy) Mother's Day

The hardest part of my cancer diagnosis, the thing that I worried (and worry) about the most, was my two children.

Who would take care of them while I was being treated?  Who would mother them when I was sick?  And, God forbid, what would happen if I died?  Who would be there for their everyday?  And, who would be there for all of their big milestones?  Who would do my job?

My food and exercise and anti cancer obsessions are really an insurance plan I've taken out with myself in my head.  The treadmill and the leafy green vegetables and low sugar diet are all about my obsession with life and being alive for all of the good stuff that is happening now and that has yet to happen. 

Last week, a year and a half after cancer, as I watched a prince marry his college sweetheart, I realized that some of my worries were slightly less worrisome--ever so slightly.

For a year and a half I have been worrying that I might not be around for my children's big and small milestones.  But, last week, after "the dress" was revealed, the vows were exchanged, the royal kisses were kissed, the fascinators fascinated, and William and Kate drove away in the Aston Martin, I realized that I didn't think for one minute the whole morning about being (or not being) around for anyone's wedding.  Or anyone's anything.

When I watched the beautiful, raven haired Kate walk down the aisle of Westminster Abbey with her father, I just thought that someday my beautiful, raven haired daughter, if she chooses to marry and chooses to have a wedding, will unquestionably be as beautiful as Kate.

And, I didn't worry, for the first time in a long time, at all.

I guess that was my brain's Mother's Day present to me.

And, I guess that really is moving forward.

 

 

Happy (very happy) Mother's Day.

Get Out of My Hair

So here's the thing about talking to a woman (this woman) about her (my) hair after chemo.  Don't.

If you really must, if you're dying to say something, just say, "you look great."  Even if I don't.   I have one friend who always tells me that I "look fabulous, very European," every time I see him.  That's okay too.  It's a very fine line.  Few people can walk it well.

I know, talking about someone's hair after chemotherapy seems like the nice thing to do.  I'm sure that I've done it before to people who have gone through chemo.  It's the most obvious and physical sign that cancer treatments are over, and everything is getting back to normal.

Maybe talking about hair feels like a good way to break the ice after a year of cancer.   As if to say, you're looking healthy.  In the beginning, after I stopped wearing my wigs, it was great and even encouraging to get so many compliments on my downy soft, new hair.  I felt like a rock star--a rock star who had just gone through a year of cancer treatment.

But, really, unless I bring it up now--my hair is off limits.  I don't care how great it might look or how great you thought it looked a few months ago.  It's not my hair by choice.  My hair (the good, the bad, and the ugly) looks the way that it does, because I had breast cancer.

My hair is a constant reminder that I had cancer.

No, I am not going to keep it short.  No, I don't know if it will stay curly (I've never had cancer before).  No, it's not easier to take care of when it's short.  (It take hours and a ton of products to keep this hair from not looking like Buckwheat's).  And, no, I do not like the new nickname "Curly."  Really, I got one that last week.

I may talk about about it.  But, my hair is a bit like a crazy family member.  I can say what I want about it, but it doesn't feel right coming from other people.

So, you see, it's a bit of a sensitive subject.  I have days when I'm not thinking about cancer--and then I look in the mirror or someone comments on my hair.  And, I am reminded that I still have to deal with this hair--and the fact that I had cancer.  I don't need a reminder.  I have and will always have many, many reminders.

It's true, these unruly chemo curls of mine are better than the old wigs for sure.  And, I know that I am incredibly lucky to be a breast cancer treatment survivor.  I am lucky that my biggest complaint is about my hair.  I am lucky.  I really am.

But, here's the thing that's hard, I just don't look or feel like me with this hair.  I survived a year of cancer treatment, and now I am (still) stuck with impostor hair on my head everyday.

It's a sensitive subject, because, I really just miss my old hair.

I have said it before, "it's all about the hair."  And, it seems it still is.


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

"Cancerexic"

With a clear PET scan a few weeks behind me, I'm trying to find balance in my life after cancer treatment.

I've said it before.  I knew this year would be hard.  When I was being treated, I had a routine, a protocol, a schedule.  Now, I'm left with a very passive treatment protocol--tamoxifen once a day, follow up appointments at Sloan Kettering every four to six months and little scientific data on lifestyle changes to help prevent a cancer recurrence.

Research indicates that increasing your MET levels (metabolic equivalent of task) 5 times a week decreases your chance of a cancer recurrence.  So I am on the treadmill 3-5 times a week increasing my MET levels.

And diet change.  Anti Cancer:  A New Way of Life by David Servan Schreiber cites research that shows that a diet low in refined sugar and flour and high in dark green vegetables and bright red fruits helps a body build a strong immune system and prevent a cancer recurrence.   The New York Times magazine recently had many articles about cancer, but one in particular ("Is Sugar Toxic?" by Gary Taubes http://www.nytimes.com ) was about levels of insulin and sugar feeding precancerous cells--specifically colon and breast cancer.

Watching what I eat and what I don't eat has turned into a bit of an obsession.  My obsession with preventing a cancer recurrence has turned me into what I call a cancerexic.

To be clear, I am not obsessed with my weight.  When I last weighed in at Sloan Kettering, I was back to my pre cancer weight.  All good there.  But, I am obsessed with following the best exercise and diet protocol for preventing a recurrence of cancer.

So I eat Brussels sprouts, kale, nuts, berries; I (try to) drink gallons of green tea; I reduce the refined flour and sugar and dairy in my diet. 

Some days it all works out just fine.  It's my new routine--my life after cancer.  I get on the treadmill.  I eat well.  I live my life.  And, I don't even think about it.  I'm on anti-cancer auto pilot.

But, other days I worry.  Actually, I obsess.  I obsess that I didn't get on the treadmill; I ate too much pasta at dinner; I had a brownie at Passover; I didn't eat kale all day.  

Cancerexia--obsessive compulsive thoughts of preventing a cancer recurrence. 

I recognize the value in my obsession.  It keeps me eating better foods and exercising regularly.  But, I some days I need a little (a lot) more balance. 

That's where my work is now--a year after breast cancer.  I am trying to find the balance in living my life and preventing a cancer recurrence.

It's my hardest job ever.

I plan to have it for a very long time.



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

Luck and Laughter

A few years ago, Jay gave me a necklace with a pendant that says "may you have luck and laughter" written in ancient Greek.  I wear it every day.  The necklace is beautiful.  I love the way the gold feels.  Just touching the pendant makes me relax and smile.  The jewelry designer, Caroline Ellen, makes all of her pieces by hand.  They are beautiful and feel like satin. 

When Jay gave me the necklace, I thought the saying was fine but not particularly romantic or meaningful.  I didn't understand then how important laughter was and how little of it I had in my life.  I was so preoccupied and uptight about getting E. and A. to school on time, making sure A. had his naps and E. had play dates, and just getting through my daily, monotonous mom duties.  I forgot to prioritize laughter. 

I wore the necklace through all of my treatments.  And, on the days that I really didn't look or feel like myself, the necklace reminded me of who I was before cancer--and who I would be after the year of treatment was over.   

I still wear the necklace everyday.  And, four years later, I get it.  May You Have Luck and Laughter.

I get it. 

Luck and laughter.  I'm ready for a lot of luck and laughter.

Caroline Ellen pendant*

* Caroline Ellen at carolineellen.com and peridotfinejewelry.com

short phonecall . . . giant relief

I just got the call from my oncology nurse, Kathleen, with the news that yesterday's PET scan was clear (http://en.wikipedia.org/wiki/Positron_emission_tomography).
 
Ovaries, bones, lungs, liver--all clear. 

No Evidence of Disease.  Anywhere.

I promised myself that if this test was clear, I would give myself (and Jay) a long break from worrying about cancer.  The worrying has become all consuming--like back in the days of my original diagnosis.  And, quite honestly, it's been ruining my life.  I'm a worrier.  But, worrying about metastasized cancer is worrying on a whole new level.  It is bottomless, and it is dark.

So, now, I'm done (and relieved).

The PET scan is clear.  I'm moving forward, really.

The Overexamined Life

The last part of my breast cancer treatment is a small white tablet, Tamoxifen.  I take one a day, and I will take it for five years.  The side effects vary.  But, for me, they have been minimal.  I don't sleep through the night, and my joints are a little stiff every morning.  But, it's hard to tell if that's from Tamoxifen or a year of breast cancer treatment.

Tamoxifen is interesting.  Here's a little science and the history.  Tamoxifen was first developed and tested as a fertility drug as it affects estrogen production.  But, it also inhibits cells from receiving estrogen.  So it was a failure as a fertility drug, but it is perfect for women with estrogen receptor positive breast cancer.  It works as an estrogen blocker.  Cancer micro cells are unable to receive the estrogen they need to grow.

So I take it every day, my little white pill of insurance that my estrogen will not feed any lingering cancer micro cells.

Tamoxifen can also cause thickening of the uterine lining (which can lead to uterine cancer) so it it standard to have a baseline uterine sonogram and biopsy after taking Tamoxifen for a few months.

I went to my gynecologist Friday for my first routine, standard uterine sonogram and biopsy.  She told me my uterus looked great, the uterine lining looked thin (also great), my copper IUD was in the right place (more good news).  And, then she said, "oh, (pause) that's interesting."  NOTHING DURING A ROUTINE BIOPSY IS INTERESTING.

"It looks like you have a cyst on your right ovary.  Do you get cysts on your ovaries?"  NO, I DO NOT AND HAVE NEVER HAD CYSTS ON MY OVARIES.

More probing and sonogramming, and again she said "oh, (pause) and it looks like you also have a cyst on your left ovary."  THIS IS NOT WHAT I CAME IN FOR.  

She went on to tell me that both cysts were approximately 4 cm and did not look suspicious at all--liquid filled, not surrounded by fluid, yadda, yadda, yadda.  But, because of my history, she said, I should follow up with my oncologist and see how she wanted to proceed.

When my radiologist found my breast tumor, she also told me that my tumor did not look suspicious.  Deja vu all over again. 

I held it together for the rest of the appointment. I got dressed, walked out of the medical building, got into my car and called Jay.  And, I just started to cry and cry and cry in that full on "I have had enough cancer, cancer talk, and cancer scans cry."

I have put in my time and been optimistic for a whole year.  I am done.  I'm tired of looking on the bright side.  I'm tired of not worrying until it's time to worry.

I'm not an optimist by nature.  I've been working hard at it all year.  Healthy attitudes yielding greater life expectancy and all that.  Blah, blah, blah.

Some people are Tiggers, some are Eeyores.  I am a Rabbit.  I am a full on worrier.  To the outside world I may look like a relaxed woman with a husband, two kids and a regular yoga practice, but no.  My name is Barbara, and I am a worrier.

And, I had really just stopped worrying about a cancer recurrence every day--all the time.  I had stopped thinking about how many of Elizabeth's and Andrew's milestones I would be around for.  (Elizabeth's bat mitzvah in 2013, definitely.  Andrew's bar mitzvah in 2016, no guarantees).  That's how I had been walking around for awhile.

In the past few weeks, though, I had really started trying to live my life like a regular person with regular life expectancy.

And, then, BOOM!  Ovarian cysts.

I called my oncology nurse when I got home and left a message.  When she called back (an hour later) she told me that ovarian cysts are normal in all women, and she was not worried.  She was not worried--at all.  And, I should not worry.

I am going to Sloan Kettering for a PET scan this Wednesday (scheduled before the ovarian cyst discovery).  PET scans find any and all tumors (not micro cells, but full on angry tumors).  I will have the results a day or two after the scan.

This is my life now.  I am going to be examined and over examined.  (Is the unexamined life worth living?)  And, doctors are going to find things--cysts, polyps, tumors.  And, every time I am going to be on this emotional cancer roller coaster hoping that what they find will be nothing. 

So, now, today, I am doing what Kathleen, my oncology nurse, told me to do.  I am not worrying.

That's a big fat lie.  I am terrified that there is cancer growing in my cancer factory body again and that I will have to meet a new team of experts at Sloan Kettering and start the whole awful cancer treatment ride--again.

That's Rabbit, the worrier, talking.

I'm trying hard to be more like Tigger.

by A. A. Milne

Hoo, hoo, hoo . . . TTFN!

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Ponytail Withdrawal

There are a lot of things that you lose (and gain) when you go through breast cancer treatment.  The thing I've been missing a lot lately is the ponytail.  It's been along time.  I used to take it for granted--the ability to just sweep all of my hair off my face and pull it into a ponytail holder.  I've been having, shall we say, ponytail withdrawal.  So . . .

If my hair is 4 inches long--at its longest, and my hair grows approximately 1/2 an inch per month, when will I be able to tame this hair (beast) into a ponytail?

another "Barbie*" girl with a fabulous ponytail

Not soon enough.

It really is all about the hair.



* trademark Mattel 

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Cancer-versary

Today is my chemo-versary.  A year ago today I started my first round of chemotherapy.  Last year I was sitting at home after a day at Sloan Kettering and waiting for the side effects of the first round to hit. 

And, today we celebrated Elizabeth's 11th birthday rock climbing with her friends.

I wonder if I'll always remember to remember each cancer-versary.  I hear from people who have gone through cancer treatment that the cancer-versaries become less important.  Some people just block them out and don't remember them at all.  Really?

Maybe someday I'll only remember the day I was diagnosed; or the day of my mastectomy; or the day I started chemo; or the day I ended chemo; or the day I ended radiation.

Probably not.  Maybe I'm just the kind of person who is never going to forget any of those dates.  They are a part of who I am now.

And, so are birthdays.  The birthdays were big before, but they are at a whole different level of big now.

One year out--moving forward and climbing high.

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These Boots Were Made for Walking

This post has nothing to do with cancer--alright, maybe just a little bit about cancer.   It's really about a great pair of boots.  I have a friend who introduced me to clog boots ( http://www.no6store.com/).  And, I love them.

It doesn't matter what kind of mood I'm in.  It doesn't matter if I have an appointment at Sloan Kettering or if I'm going out to dinner.  It doesn't matter if I'm feeling great or if I'm worrying about a pain in my back (that I'm convinced is metastasized breast cancer to my spine--like today).  I put these boots on, and I'm feeling good and ready to go . . . walking. 

No. 6 Clog Boots

I'm not sure what that says about the boots or about me.  Maybe the boots are incredibly awesome, or I'm incredibly shallow, or I have an incredibly great friend who recommended an incredibly great pair of boots to her incredibly shallow friend. 

I like to think that it's really about my friend (my friend who brought me dinner, watched my daughter, baked dark chocolate chip cookies for me, brought me chick lit books and recommended great boots last year).

Because, there are two things I know for sure:
My team at Sloan Kettering took care of my body (fingers crossed).
And, my friends took care of me and my family.

There are a lot of things I can do, but there is no way I could have done cancer without friends--and good shoes.

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"Did I Ever Tell You How Lucky You Are?"*

Sometimes, in my head, I play a game.  I look around and think about other people's lives.  In the airport or at the playground, I look around and wonder.  If 1 in 8 women are diagnosed with breast cancer in a lifetime, there are many people out there whose lives have been touched by breast, other cancers and countless types of difficult situations.

Match Game (CBS, 1973)

Match Game Theme Song 

(go ahead, click on it)

So the game (I picture it as a game show) goes like this:  the set would be very 1970's (picture Match Game), and the host would be Gene Rayburn, of course.  He'd have on celebrity guests (Charles Nelson-Reilly, Phyllis Diller, Brett Somers, Betty White, etc.), and ask questions like:

If you could choose . . .

would you rather have breast cancer OR be living in Japan post tsunami--near the nuclear reactor?

would you rather have breast cancer OR be living in a country with an unstable government about to be air raided?

would you rather have breast cancer OR be living in Charlie Sheen's head?

The celebrity's answer would, of course, have to match the answer of the contestant.  (The contestant has only been me--so far).  You get the idea.  That's how it goes.  Every time I play, for every disaster scenario, I choose breast cancer.

In the game, in my head, I choose breast cancer.  Hmmmm . . .

Maybe, in that weird cancer way, I'm lucky.  I already know my natural disaster. 

But, real life isn't a game show.  And, difficult situations are not either/or.  There are women and families living in the tsunami aftermath in Japan and dealing with breast cancer.  And, there are women and families in Libya and dealing with breast cancer.  My prayers are with them.

I guess that I am lucky, oh ever so lucky, so very lucky--in that weird cancer way.



*  "Did I Ever Tell You How Lucky You Are?" Dr. Seuss (1973)

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Happy birthday, baby

In the middle of all the swimming and snorkeling and sun, my girl, my girl with the long brown hair, turned 11.

But, somehow, the birthday cake message from the U.S. to the Dominican Republic got a little lost in translation.

Happy birthday, baby.

Psychosomatic Symptoms (difficult to endure)

On my last day of chemo (July 1st), my nurse, Kathleen, gave me the talk that she probably gives to all of her patients as they end chemo.  She told me about follow up visits, things to watch for, when to call her and all the usual end of chemo stuff.  And, then she told me that the last day of chemo is an emotional and difficult day for a lot of patients.  I had been monitored and treated and weighed in and blood tested every other week for four months.  Next I would go on to radiation, and I would be monitored and treated and weighed in and followed for another 28 days.  And, the end of all that monitoring and following and treating can be difficult too.

The end of treatment would be the beginning of life as a cancer patient on my own.  Kathleen told me that in the beginning anytime anything hurt, like my toe, I would think that it might be a cancer recurrence.  And, that was normal.  But, she promised, over time I would stop thinking that every little ache and pain was cancer.  That it would just be an ache or pain. 

Kathleen was right.  Post treatment/no treatment is emotional and difficult.

I have so much time now.  Cancer treatment kept me very busy.  I'm not chemo foggy anymore.  And, I'm not exhausted.  So I have a lot of time to think about me and this body.

I have time to do a full body scan every morning when I wake up.  Is my shoulder stiff?  Does my scar tissue feel tighter than the day before?  Does my implant hurt?  Am I bloated?  Do I feel crampy?  You get the idea.

As if being vigilant about how my body feels will help me prevent a cancer recurrence.

(To be clear, the cancerous tumor in my breast was so small, I couldn't even feel it when the surgeon showed me where it was.  So what am I doing with the daily full body scan routine?  Nothing that is prognostically helpful.  But, still I do it.  Everyday).

So if I'm checking everyday, of course I'm finding aches and pains.  A month ago, I was feeling bloated and had a dull pain in my abdomen.  I was sure that when I went for my next follow up visit, my oncologist would tell me she suspected a cancer recurrence in my liver.  It turned out that my ovaries had turned themselves back on, and I got my first period since I had started chemo last year.  (Chemotherapy puts some pre-menopausal women into menopause; and some women not.

Then last month, I bruised muscles in my ribcage, and I was positive that my breast cancer had metastasized to my ribs (like Elizabeth Edwards). 

No low level, amateur anxiety for me.  If I'm going to be anxious about a cancer recurrence, I'm a an anxiety professional.  I'm going big--or I'm going home. 

So that's what it's like to be in my body (and my head).

The song in my head these days is "Adelaide's Lament" from Guys and Dolls (Faith Prince, the 1992 Broadway production).  It reminds me that these aches and pains are (fingers crossed) "psychosomatic symptoms, difficult to endure."  And, I'm going to try to let the experts monitor me--and (fingers crossed) not find a recurrence. 

(But, if I'm being completely honest, right now, as I write this, my ribs still ache--a little.  And, I'm not entirely convinced that it's just a bruised muscle, yet).

Moving forward . . .

crab (cancer) hunting (Punta Cana, 2011)

Keep your friends close, your enemies closer

 
The Emperor of All Maladies:  A Biography of Cancer (Siddhartha Mukherjee).  A little light reading for the beach.

My boy reading Dan Gutman at the beach

I like to read at the beach.  My reading guru friends had recommended a bunch of books for me to take on our trip:  To the End of the Land (David Grossman), Super Sad True Love Story (Gary Shteyngart), and  The Finkler Question (Howard Jacobson ).  And, I downloaded them onto my Kindle.  But, first, I read the book about cancer.

Some (Jay) might argue that last year was enough about cancer and that I didn't need to subject myself to a book about cancer.  But, I kind of felt like the book is required reading for anyone who's gone through cancer treatment.  As if I somehow feel (hope) that there is direct relationship between knowing about your disease and surviving your disease--ah, if it were only that simple.  Not so much.

Still, I wanted to keep my friends close and my enemy closer.

A Biography of Cancer is so well written--I almost forgot (not really) it was about cancer.  It is easy for a non math and science person (me) to understand the research, the genetic mutations, and the science of cancer.  And, fascinating for the history and literature person (also me) to learn more about the history of the disease, the treatments and the politics. 

It was enjoyable (in that weird way that books about cancer can be enjoyable), and it made me think.  If cigarettes are the "smoking" gun behind most lung cancers.  And, HPV is the cause of most cervical cancers--and, if bacterial infection and chronic inflammation causes many stomach cancers, what is causing breast cancer?

What caused my breast cancer?

I wonder, what will we know about breast cancer ten years from now that we don't know now?  What is it in women's lives that makes the breast cancer statistic 1 in 8 women in a lifetime?   What are we eating, drinking, breathing, doing that is causing breast cancer? 

Cancer is smart, and cancer is complicated.   And, like many of its hosts, cancer is a survivor. 

My breast cancer (estrogen and progesterone receptor positive) has a standard (and generally successful--fingers crossed) treatment protocol in 2010.  But, wouldn't it be nice, forget nice, wouldn't it be awesome if women didn't have to have their breasts cut off, trudge through four months of chemo and be burned inside and out by radiation for 28 (or more) consecutive days to be treated?

Forget nice, it would be off the charts awesome if we could prevent breast cancer.  It would be ridiculously awesome if my 11 year old daughter and her friends will be able to prevent (not just survive, fingers crossed) breast cancer someday.

For me, I'm working (it's a part time job) on preventing a recurrence.  I go to my follow up appointments at Sloan Kettering, take tamoxifen, get on my treadmill, eat out of non plastic containers, take vitamin D, drink green tea, continue to eat foods on the anti cancer diet (Brussels sprouts, kale, anyone?), keep my body fat down, stay away from high glycemic foods, stay connected to friends, get enough sleep.

And, with Cancer in My Rear View Mirror, we'll see what happens. Fingers crossed.