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

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

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

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

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.

In like a Lion, Out like a Lamb

Two weeks ago I was packing for a family vacation to the Dominican Republic.  We had the same trip planned for last year--same week, same place.  But, we canceled.

Last year, instead of a week long trip to the Caribbean, I had a day trip to Sloan Kettering for a mastectomy.

Last year, pre-surgery, I was shopping and searching for button down shirts and flannel pajamas.

This year, I was shopping and searching for bras and bikinis.  The bra shopping went badly.  I was emotionally (and physically) beaten down and bruised.  More on that in my previous post.

I still haven't found a "bra" that works well and is comfortable, BUT I did find a bikini top that does not have under-wire, fits great, looks great, and can be worn as a bra.

I already had a Malia Mills bikini that my best friend gave me a few years ago.  The old bikini fit my new body.  It got me thinking.  I called Malia Mills and spoke to Ashley who helped me choose the best styles and sizes for me.  The most amazing customer service ever.

I *HEART* Malia Mills!

She designs (and manufactures in the US) the most amazingly flattering, comfortable bikinis, tankinis and bathing suits.  I ordered a tankini AND a bikini top to wear as a bra.  Seek and ye shall find . . .

I wore the bikini and tankini all week.  Not only did I look symmetrical (no small feat), but I had cleavage like a regular woman (or a 41 year old woman who has not had a mastectomy).  That might not sound like a big deal--but symmetry and cleavage are a big deal one year post mastectomy.

A.  Very.  Big.  Deal.

Thank you, Malia Mills (and Dr. Cordeiro)

"Love thy differences" (trademark Malia Mills)

Ashley told me that Malia Mills is at work on a lingerie line.  And, I can promise you that I'll be one of her first (and very frequent) customers.  Bra problem solved.  Cross it off the list.

The bra shopping disaster got me thinking.  There have been a bunch of retailers and products that I've been told about or I found that were incredibly helpful this past year.

I wanted to share them--in no particular order.

Hip (Breast Cancer) Tips

PJ Salvage Flannel Pajamas (  http://pjsalvage-shop.com/  Important mastectomy advice from Andrew's kindergarten teacher--it's impossible to get into pullover shirts post surgery.  Button down shirts (I got mine at J Crew) and pajamas (I bought them at Nordstrom) make life much easier.  Button down shirts also hide the bulkiness of any surgical drains post surgery).

Barry's Bitz and Pieces ( www.bitzandpieces.com for wigs and head coverings.  Edward was my wig choosing and wig fitting hero).

Buff  (  buffwear.com  Great head wraps and head bands that are hip and comfortable--with SPF.  I used the head wrap alone and the headbands with my wig.  I found them at the Sloan Kettering Breast Center boutique and online).

Laura Mercier (  http://www.lauramercier.com/store/shop/Brows_Brow-Powder-Duo_prod150018  ) eye brow brush and eye brow powder

Giovanni "Smooth as Silk" Deep Moisture Shampoo and Conditioner  (Even when I had no hair, I still shampooed my head.  This brand was recommended to me, and I thought I should pass it on.  It was very moisturizing on my dry, bald scalp.  I still use it.  I found it at Whole Foods).

Weleda Calendula Baby Face Creme  (  http://usa.weleda.com/our-products/categories/baby.aspx  ) I used it after every radiation treatment and before bed every night.  I still use it, because five months since my last radiation treatment, my body is still at work healing the radiated skin.  I found it at Whole Foods).

Loreal "Lumi Controle Define Polish"  (When my hair first started to grow in, it needed a little texture and a lot of help.  This worked really well).

Michael Casey (Sally Hershberger Salon)  Hair colorist extraordinaire.  The man who turned my "Bea Arthur" gray hair into "Halle Berry" curls. 

Malia Mills  (maliamills.com I really can't say enough about how much a tankini and bikini/bra impacted my vacation and my life.  Malia Mills bikini made me feel not just good for a woman who had cancer--but just good.  Her tag line is "Love Thy Differences."  Enough said).

lululemon athletica  (lululemon. com  Have I mentioned I'm a fan?  I went to every chemo infusion in comfortable, yoga clothes that made me feel comfortable, put together and strong enough to fight breast cancer).

---------------------------

This winter has been a huge emotional roller coaster ride.  These months filled with anniversaries of diagnosis, doctors' appointments and surgeries have been overwhelming--overwhelmingly overwhelming.

I have days that I am still thinking about cancer (and cancer recurrence) all day.  I think about who I was before cancer, and who I am now.  The cancer treatment was awful but manageable.  I think, because it was so active.  These post treatment, passive days can be killer.

And, I have other days that I get through with just a few (well, more than a few) fleeting (okay, maybe not so fleeting) thoughts about cancer. 

Last year, March came in like a lion with my mastectomy on March 8th.  And, this year with a week of vacation at the beach behind me, I hope it goes out like a lamb.

like a lamb . . . (with a Malia Mills bikini under my t-shirt)