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.

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.


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 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.


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.

"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.



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.