My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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The Droopy Boob

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“Droopy boob.”  This is not the title of my new book, my rock band or my porn name.  It is what was described to me this week about my remaining original breast.  The good breast.  The one not sliced off and then fried.  The one with the nipple.  The one that still has feeling and sensation.  The one that, while imperfect, is perfect to me because it’s mine.

When I first started seeing my plastic surgeon two years ago, I remember that after my mastectomy and we starting talking reconstruction, he mentioned that he would like to do a lift on my left breast to make it symmetrical.  He said that my breast was, “a little droopy,” to which I responded, “well, that’s because it’s sad because it misses his friend.” Funny, right?  I thought so.  He didn’t get it.  Or doesn’t have a great sense of humor.  Or both.  I never thought more about it.  The DIEP Flap was such a big surgery I told him that I didn’t want him to touch any other part of my body.  Slicing me in half was quite enough, thank you!

Before breast cancer, I liked my breasts.  They weren’t too big and while they weren’t quite as high as they were when I was 18 (I had just finished breast feeding for 17 months, after all), I thought they still looked pretty good.  It never occurred to me to do anything to my breasts to enhance them in any way.

This past week, almost a year after my DEIP Flap, I went back to my plastic surgeon to discuss a follow-up surgery to make my right breast, the one that was chopped off and reconstructed, look more like, well, a breast!  Because isn’t that the point?  My surgeon did a great job of matching the size and the symmetry is pretty good.  But the top of the breast is flat.  I described it to him as a blown up pancake.  There’s no cone shape.  I want that changed.

He’s not sure that he can get it exactly like that but he suggested that if I want more symmetry, that I do a lift on the other breast because, “it’s a little bit droopy.”  He called my breast droopy again!!!!!!!  For real!

Now, when I think of a droopy breast, I think back to when I was 9 years old and my mom sent me to a babysitter after school.  She was a mom with three children.  She was overweight and had large breasts.  I remember (I’ll never, ever forget this), one day I was at her house after school.  She was in the kitchen cleaning.  I asked her something and when she turned around, I could see her nipples hanging out from the bottom of her shirt. I remember being completely shocked.  I had NO IDEA boobs could do that!!!!!  I remember thinking, “how are her breasts at the bottom of her shirt?”  It didn’t make sense to me!  So, when I hear the term, “droopy boobs,” that’s exactly what I think of.

In comparison to my babysitter, my left breast is alert and perky.  It’s still in the chest area and that’s pretty good.  But according to my plastic surgeon, if I want true symmetry, I’ll have to do some work on the good breast.  He said he could try to get some droop on the right one but “why would I want to do that?”  Really?????

I asked what the lift would entail.  He said he’d have to cut a crescent above the nipple and would do a lift from there.  Another scar.  In a very noticeable place.  I forgot to ask but it seems that if he made this surgical cut, I’d lose some sensation in the nipple.

I want nothing more than to look like myself again.  I thought that was the whole point of reconstruction.  But as I go on and move closer to the end of this cancer experience, I’m reminded that, once again, I’ll never be like I was.  My rebuilt breast will never look like the original.  It’s a fraud.  And now it’s likely that one nipple will be pointing straight while the other a little more south.  I’ll be like a Picasso.

I know that my surgeon kept mentioning this because he is a perfectionist.  As well he should be.  I get it.  But my body is not my own anymore.  I still look in the mirror and don’t recognize the reflection.  I think that another major scar would break me.  What would it be for, really?  Symmetry when naked?  What if I still can’t look at myself without being disgusted?  Then what’s the point of that symmetry?  What’s the point if it’s at the expense of my peace of mind and my self worth?

I am taking into consideration everything he said but my gut is telling me to keep the cutting to a minimum.  I have been through enough.  I have done enough.  It will have to be enough.

My next surgery is scheduled for February 16.  It will be much easier that my DIEP Flap.  He said that there’s even a possibility that I won’t have to be put under general anesthesia.  That would be great.  And barring any complications, I’ll be ready to go back to work in a week.

How many reconstruction surgeries did you have?

Did you have a lift on your breast to match the reconstructed breast?  Are you happy you did it?  Do you regret it?


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Life After Breast Cancer: The Other Side Of Pink

 

This post was written for an organization that I am a part of, 5 Under 40.  5 Under 40 helps breast cancer survivors and those with the BRCA mutation age 40 and under with beauty and wellness services.  In addition, they host support groups and meet ups.  They have helped me in so many ways so when they asked if I could write something for them, I jumped at the opportunity.  I want to thank 5 Under 40 for all of their support and for giving me a voice in their community.  Please check them out at 5under40.org and if you are in the NY/Tri-state area and would like to be connected to 5 Under 40, please let me know

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            I know what I was told.  I was told that it was going to be a hard year; a mastectomy, chemotherapy and radiation.   I was told that I was going to lose my hair but it would come back and while it did, I’d get to wear cute hairstyles.  I was told that I’d lose some energy and might feel sick but once it was done, I’d return back to normal.  Normal.  That’s a word that I heard a lot referring to what would happen when I finished treatment.  I found “normal” to be far from the truth.

I was diagnosed with stage 2B breast cancer in my right breast and lymph nodes at age 37.  My son was 19 months old and we had just weaned from breastfeeding.  I was working full time as a teaching artist, my passion, and beginning to consider ways I might advance in my career.  Secretly, I was also beginning to think about what life might be like with another child.  Originally I had said, “one and done,” but, as Mother Nature tends to do so well, I forgot about the lack of sleep, the spit-up and the aching raw nipples.  I remembered the cuddles, the first giggles…the first everything.  But when you are diagnosed with cancer, many of your plans for the future get put on hold or changed forever.

I endured my treatment like a trooper.  I made jokes, smiled (and cried and threw a few temper tantrums) through the tough days and created a mantra to get me through the hellish days, “a blip in time,” to remind myself that all pain and discomfort would pass.  Through my six months of chemotherapy and 15 sessions of radiation, I checked each treatment off my calendar until the end, when my life would go back to normal.  I looked forward to spending long days with my son without feeling completely warn out.  I was excited to work and not be afraid that my chemobrain would completely derail or ruin me professionally.  I wanted to hang out with my friends, drink wine, eat sushi…hell, I just wanted to be able to taste my food again!!!!!!  I was excited to not spend time every week at the cancer center and to get back some time for myself.  I was ready to look normal again, to not look like a cancer patient and to get my body back.

When you are going through cancer treatment, you are surrounded with support; support from your medical team, family, friends and, if you are lucky like me, colleagues and bosses.  But, when treatment ends, a lot of that support goes away.  At one point you are seeing your oncologist every 2 or 3 weeks and suddenly, it’s every three months.  Of course you can call whenever you need something but, in their eyes, they have done their job.  Now your job is to get back to living life.

Or now that your hair has grown back, your colleagues figure that the worst is over and that you are feeling better and can return to work as you did before.  What they don’t know is that cancer related fatigue can last for years.

The offers for home cooked meals, laundry help, childcare also start to dissipate.  When treatment ends, so does a lot of the help that came with it.

It wasn’t long after treatment ended that I realized returning back to my normal life was unrealistic.  I no longer looked like myself, even with my hair growing back.  I developed major body image issues (remember sixth grade people?) because of treatment related weight gain and the whole one boob thing.  I looked in the mirror and didn’t recognize the woman staring back at me.  This was disconcerting.

I didn’t feel like myself.  I remember one-month post chemo, I tried to take a bike ride for exercise.  My husband encouraged me to go for a long ride.  I almost didn’t make it home.  My body was no longer capable of doing what it had done just six months prior.  This included exercise or for daily endurance which was for things like raising my son, grocery shopping, scrubbing the bathroom…whatever.

I can go on and on about why life wasn’t normal.  But I think the hardest thing for me after cancer was dealing with the trauma of what had happened to me.  I fought so hard for so long and suddenly, it was over.  I didn’t know what to do next.  I didn’t know what was supposed to come next.  I kept thinking I would feel the same, think the same and look the same as I did before cancer.  None of those things happened.  Instead, I felt like I was living in a body that wasn’t my own and having thoughts and feelings that were different than what was normal for me.

Depression post-cancer is very common and it was happening to me.  I was afraid every day about recurrence.  I was afraid every day that I couldn’t live up to everyone’s expectations of me or the expectations I had for myself.  And managing post-treatment side effects like lymphedema and fatigue were more difficult than I anticipated.

I don’t write all of this to scare people.  I write about it because it is the truth for many of us.  I think what is hard is that breast cancer is depicted as this “happy” cancer or “party” cancer.  I mean, what other cancer is celebrated with pink feather boas and t-shirts that read, “fight like a girl” or “breast cancer warrior?”  We see images all of the time bald women surrounded by their friends, covered head to toe in pink and smiling and cheering.   We hear stories about women who say that cancer was a gift and has changed them for the better.  We see these images and hear these stories but that is not everyone’s reality.

Some people hate the color pink (who me?) and don’t feel empowered by pink glitter and cosmopolitans.  Some of us don’t like to walk with Komen with every girlfriend we’ve met since Kindergarten.  And some of us think cancer was a curse and feel that it didn’t change us for the better.  Some of us are angry about what happened to us.  Some of us, instead of not sweating the small stuff (we aren’t supposed to sweat the small stuff anymore, we’ve been through worse) feel that each wound, no matter how small, cuts more deeply.  And some of us, after cancer, have a hard time.

This is not true for everyone.  I have met so many people who have gone back to living their lives and living them well soon after treatment was done.  We read about these stories in the papers and the breast cancer websites and blogs all the time. Many of the stories we hear are the ones where there is a happily ever after.  But, if you are not living happily ever after, after having cancer…you are not alone.

Here’s what I will say.  I am two years post diagnosis.  As of just two months ago, I stopped crying every day.  I still think about cancer every day but I’m not crying.  That’s a big step.  I am also finally starting to think about my future and with the help of a therapist, I am defining my new normal.  It’s hard work to redefine yourself but I’m finding the effort worth it.

Life after cancer might not be what you expect. Know that whatever you are feeling, thousands of others feel the same way.  Know that there’s no right or wrong way to do cancer or to feel after breast cancer.  Also know that there is help for you if what you feel isn’t like a “warrior” but like you have been defeated.

You are not alone.

You are not alone.

 


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Belated Happy Thanksgiving

Hi everyone, I just want to wish you all a belated Happy Thanksgiving.  I hope, no matter where you are in your cancer experience that you had a lovely day with family and friends and got to reflect on the things you are thankful for.

Here is my list.  I am thankful for:

  1. My husband
  2. My son
  3. My parents
  4. My aunts and uncles and cousins
  5. My friends
  6. My work
  7. My colleagues
  8. The amazing students I get to work with
  9. Netflix
  10. Amazon Prime
  11. The fact that I’m off Zoladex and my hot flashes have subsided
  12. That I’m trying to get my health back in order.  I’m going to the gym and slowly getting better.
  13. The fact that I don’t cry every day anymore.  That was hard.
  14. My blogging and breast cancer community.  I’m always inspired by all of you.
  15. Farmers markets, my place of happiness.
  16. My healing body.

Happy Holidays to all of you!

 


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Devastation and The New Fight

I try not to talk politics here.  This is a breast cancer blog after all.  But I have pause our regularly scheduled programming.   Something important has happened.

Most of you know by now but Donald Trump has won the United States presidential election.  Our country is shocked.  Even those who voted for him didn’t really think it was going to happen.  For many of us, it is the unthinkable, the worst case scenario.  But I don’t want to get into that here.  I don’t want to talk about right and wrong, educated and uneducated, bigoted and accepting.  My views are strong, that’s for sure.

What I want to talk about is how this election has felt so much like getting breast cancer (hear me out) and what it could mean for those with cancer and pre-existing conditions.

I started out on Tuesday, November 8th with so much hope.  I took my son with me to vote in the morning and we cast our vote for Hillary Clinton.  I was shaking with excitement because I believed she was going to be a great president, we were helping to shatter the glass ceiling and because Oliver wanted to help me do it.  Oliver and I spent the day doing wonderful things around the city; going to Chinatown to find Oliver Street, going to Bryant Park to ride the carousel, eating too many treats.  It really was special.

But after I put Oliver to bed, with the promise of a beautiful tomorrow, things started to turn.  By 9:30, things were not looking good.  My stomach started to sink.  The rest of the night, the waiting game, was like waiting for my cancer diagnosis.  I know that sounds dramatic but the feeling was similar.  The same dread.  The same lack of control.  The same deep knowing of what was coming.  Like the time of my diagnosis, I started to cry and I didn’t stop.  I didn’t sleep.

By 2:30am, I had gotten one hour of broken sleep.  The announcement was made.  I was devastated.  I didn’t sleep again.  Just like my diagnosis.

The next day, like many New Yorkers, I was in a daze.  I wavered between shock, denial and devastation.  Just like my diagnosis.

And just like my diagnosis, days later, I am ready to fight.  I have fought the cancer within my body and now I’m ready to fight the cancer in our society.  Consider my gloves on!

No matter where you stand politically, if you are reading this blog, we all have something in common; a pre-existing condition.  I am so lucky to be on my husband’s wonderful insurance.  I am in a good place.  But there are so many who are part of the Affordable Care Act (ACA) who stand to lose so much.  I know that Trump recently said that he will protect those with a pre-existing condition.  But he has flip-flopped so much, we can not trust anything he says.  I can see him saying “I never said I’d protect people with pre-existing conditions.  That costs way too much money!”  And even though I have my husband’s insurance, it’s always possible that he could lose his job.  And then what?  That frightens me and I think it should frighten you.

I don’t have any solutions now.  Words of advice or comfort.  I’m not there yet.  These things just need to be said.

I hope that no matter how you voted, we can come together and love each other.  I really do hope this.  Because come January, we will need each other more than ever.

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Too Soon

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Picture taken in Prospect Park, one year ago.

In Prospect Park near where I live here in Brooklyn, there is an amazing tree.  In the summer, it looks like any other tree.  You could pass it and never give it a second thought.  It is in the fall that you see it’s true potential; it glows with orange and yellow.  The colors are like a fireball and the sight literally stops people in their tracks.  Year after year, this tree fails to disappoint and my husband and I make an annual pilgrimage to bask in it’s beauty.

Last weekend, we had a pretty rough storm here in New York.  Rain fell all day long and the wind gusts were strong and relentless.  The next day I went for my run in the park.  As I turned the corner I took out my phone to take a photo of my favorite tree.  But what I saw was not the full glow of neon leaves but rather threadbare branches, patchy and flimsy.  The storm had taken the leaves before they were ready to fall.  I didn’t take a photograph.  I couldn’t.

Immediately, the tree made me think of all the women who have endured the storm of cancer and who, like the tree, have been taken from us before their full bloom and glory have been shared with the world.  It reminded me that nothing is certain.  Nothing is permanent.  That all life is fragile.

Breast cancer awareness month ends in just a few short days.  We have been subjected to the usual onslaught of media coverage, walks for the cure, cheerleaders with pink sparkle bows in their hair, products being sold with false promises of major donations, signs making a joke out of our disease and pink t-shirts galore.  But that’s not what this month is about.  This month is about remembering all of the women who have been taken from us too soon; whose potential will never be fully realized, dreams never completely fulfilled.  Just like my beautiful tree.31_oliverfullsizeoutput_8ebfullsizeoutput_8df


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I Have Always Been Aware

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Me on the left, next to my grandmother, my brother, Jesse on the right and my cousin in the front.

I honestly can’t remember a time that I didn’t know about breast cancer.  Along with the Holocaust stories my grandmother would share with me, crying in anger for what she had experienced, she would also cry about losing her breast to cancer.  She often complained about the pain she was in and how uncomfortable her prosthetics were.  I remember seeing her body, one breast completely mangled, missing, concave.

Breast cancer is something that’s inherited in my family.  Some families get long legs, blue eyes, dimples.  We get breast cancer.

I always knew that breast cancer was going to happen to me but I planned out the way it was going to happen.  I’d be in my 60s.  I would have been getting yearly mammograms for 20 years at that point so, when we caught it, it would be very early stage.  Treatment would be minimal.  I would be praised by doctors for being so diligent about my care.  They’d wish that there were more patients like me.

I never expected to avoid the cancer.  I just never imagined, in a million years, that it would happen to me in my 30s and that it’s effects would be so life altering.

This is one reason why breast cancer awareness month is so hard for me.  Because I was so aware of the fact that it would happen to me and even though I was more aware than most thirty something year olds, it didn’t make a difference.  I still needed to lose my breast.  I still needed chemotherapy, radiation, hormone therapy.

I think we should completely do away with Breast Cancer Awareness Month and replace it with Breast Cancer Advocacy Month.  It should be a month where doctors and nurses go into underserved communities to provide free care to all women.  It should be a month where congress hears the pleas and needs of my metastatic sisters.  It should be a time when the whole breast cancer community comes together; patients, doctors, researchers, etc…to discuss what we need to move forward.  It should be a time when awareness looks like real statistics and information for men and women rather than cutesy slogans, pink products and images that sexualize and demean our disease.

Awareness only gets you so far.  It helps us to be curious and, hopefully, diligent about our bodies and care.  But that’s it.  And that’s not enough.  I am proof that it’s not enough.

 


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The Grass Is Always Greener

I had another pouty session for myself recently.  I got the results of my blood test back from my oncologist and, for right now, they are reading as post-menopausal.  When your cancer is ER+, this is the news you want to hear.  You want your body to be making as little estrogen as possible.  I have be purposefully and likely permanently put into menopause.  While I suppose this is good news, I’m really very depressed by it.  I never minded getting my period that much.  It’s not like I liked it or anything (I had terrible cramps and crazy mood swings) but getting it every month let me know that my body was still working and healthy.  It was something I could count on.  I knew exactly when it was coming (often down to the hour) and it made me feel like a woman.

I haven’t gotten my period in nearly two years.  Sometimes I mention this and a woman’s first response is “Oh, that’s so awesome!!!!”  I can see why one would say that.  But the loss of my period is directly linked to my loss of femininity.  Not only is that thing that made me a woman, that I could count on every month, gone, but so is my ability to have more children.  And that just fucking sucks.

Sometimes I forget that, in reality, I’m really very lucky.  Yes, cancer was shit and it’s the gift that keeps on giving but, I’m here and, at least for now, I’m not going anywhere.  While I complain about being forced into menopause, I know that there are many women who wish they could be on medications like Tamoxifen or Zoladex (which I’m off of right now) to keep cancer at bay.  Women who are triple negative or diagnosed stage IV.  But sometimes I think about the women who are not ER+, (who would give their right leg to be on this medication) and think, well, at least they have a shot of having a baby (if chemo didn’t force them into menopause).  It’s stupid.  It’s insensitive.  But it’s how I think sometimes.

Sometimes the grass seems greener on the other side.

 

But knowing that in many ways I have it good, I don’t want to forget that this can change tomorrow.  My luck could run out and I might wish for the days of hot flashes and infertility being my biggest worry.  I know that at any time I could become one of the 30%.

So, to continue with this October breast cancer month thing that we’re in, I want to highlight a couple of organizations that are working on a cure for the only breast cancer that kills, stage IV.  While all breast cancer sucks and the treatments for it have the most awful effects, there is no cure for stage IV, only treatment and management.  This needs to change.  Like, yesterday!!!!!!  These organizations are fighting the good fight and are dedicated completely to finding a cure.  There are no fancy advertisements.  No pink boas or ribbons.  Just research, research, research.  If you have some money that you have been aching to donate, I urge you to consider donating to METavivor and Metup.

Here’s METavivor’s mission.

METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer. At the time of METAvivor’s founding, no organization was dedicated to funding research for the disease and no patient groups were speaking out about the dearth of stage 4 cancer research.  While more and more people have taken up the cry for more stage 4 research, METAvivor remains the sole US organization dedicated to awarding annual stage 4 breast cancer research.

Here’s Metup’s Mission

MET UP is committed to changing the landscape of metastatic cancer through direct action. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer. We are convinced that the deaths of women and men from metastatic breast cancer are a paramount issue, and we pledge ourselves to oppose all who deny the reality of the 522,000 people who will die from metastatic breast cancer globally every year while waiting for a cure to be found.