My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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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

grandma

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.

 


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Don’t Put Your Money Where Your Boob Is

pink

Groan.

Grumble, grumble.

Cringe.

Stomp foot.

It’s that time of year again.  October.  Pinktober.  The time of year that America and the world is supposed to “celebrate” breast cancer, bring awareness to the disease and get every woman to touch their boobs.  And, while we’re at it, buy a few pink things to support the cause.

But do me a favor.  Do not buy a pink toaster, kitchen aid, pen, purse, drink, lipstick, donut or bagel for me.  Do not buy a pink bra, t-shirt, socks, boa or scarf to show your support.  Please, do not buy a pink car, bucket of fried chicken, gun (yes, there are pink guns people!!!!), perfume, football, stiletto or nail polish because you think it’s helping.  In the grand scheme of things, it’s probably not.

I know you are buying these things because you are a good person and you are trying to help and why not get something cute you can show off while you’re at it?  I get it.  I do!  You’re heart is in the right place.  But when you buy these things, you need to ask, “where is this money really going and how much of it is spent on research?”  Breast Cancer Action has four questions you should be asking and they are good ones.  So if you really want that pink thing you found at your local shop, take a look at these questions to ask first.

  • Does any money from this program go to breast cancer products?  How much?
  • What organization will get the money?  What will they do with the funds?  How do these programs turn the tide of the breast cancer epidemic?
  • Is there a “cap” on the amount of money you will donate?  Has this amount already been met?
  • Does this purchase put you or someone you know at risk to toxins linked to breast cancer?

If after asking all of these questions you still want to buy something “pink” because of how it makes you feel, go for it.  At least you’ve done your research.  But I urge you to also donate directly to organizations that are working to cure metastatic breast cancer or that are providing essential services to those who are going through treatment or have finished active treatment.  Which ones, you ask?  Well, there are a lot and my goal is to feature as many of them as possible in the month of October.

In this post, I’d like to feature organizations that I have personally used that I am eternally grateful for.  They are not researchers.  They are not going to cure the disease.  But they make living with breast cancer a little more tolerable.  I hope that you can give any amount to their cause because they have helped so many women like myself.  What they do is nothing short of extraordinary.

5 Under 40 Foundation

Mission: To provide medical, wellness and beauty services to women under the age of 40 who have been diagnosed with breast cancer or have tested positive for a BRCA gene mutation. We focus on a woman’s whole being in order to empower, foster hope and improve the quality of life for women in the face of this disease.

The organization was started by Jennifer Finkelstein, who was diagnosed with breast cancer at age 32, 2 months before her wedding day.  The organization focuses on working with women who were diagnosed with breast cancer before the age of 40 or have test positive for the BRCA gene mutation.  The money they receive goes toward services like medical (mammograms, lymphedema support, nipple tattoos, medical massage therapy), wellness (personal training, yoga, nutrition) and beauty (quality wigs, makeup, scarves).  The organization also holds support groups with leaders in the field such as nutritionists, oncologists, makeup artists, lymphedema specialists and more.

5 Under 40 helped to fund my very expensive lymphedema therapy and I have been to countless support group sessions.  I find the services they provide invaluable and have seen first hand the impact they have had on dozens of young women.  Please donate!!!!

 

Hair We Share

Mission:  “To help maintain the dignity, confidence and self-esteem of those affected by medical hair loss.”

Hair We Share makes custom wigs for men, women and children who suffer from medical hair loss.  This can be from cancer treatment, for alopecia or due to a trauma.  The organization relies solely on hair  and monetary donations.

Hair we Share generously donated a wig for me and I was ever so grateful.  Please consider making a donation in any dollar amount that you can afford.  Or, if you are considering donating your hair, this would be a great organization to consider.

 

Hidden Warriors

Hidden Warriors mission has many levels and goals that I invite you to read here but it’s main goal is to use costume and makeup role play as a way to empower women who have undergone cancer treatment.  Women dress up as “warriors” with over the top head pieces, costumes, fantasy makeup and then do a photo shoot while holding a power pose and listening to music that the warrior finds empowering.

I participated in their workshop last winter and it was one of the most fun experiences I’ve had in a long time.  What they do is truly unique and the director is passionate about empowering women to find the warriors within themselves as a way to help fight the disease and live a more positive lifestyle after treatment (or during treatment).

They are trying to do as many of these workshops as possible but need donations to make it happen.  If you would like to donate, your money would be going to a worthwhile cause.

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What organizations have helped you through the cancer process?  Please comment below.


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My Name is, No

noBreast cancer took so much from me; my breast, my self-confidence, my health, my comfort, my feeling of safety and more.  But one thing I decided I wasn’t going to let it take from me is my professional credibility.  I pushed through the terrors of side effects from chemo and radiation and continued working throughout.  I wrote periodic emails to employers letting them know how well I was doing and that I would happily accept any work that they through my way (with some restrictions, of course).  I didn’t want people to see me as sick or incapable.  I had worked so hard to make a good name for myself, I didn’t want all of that work to go to waste because of cancer.

For the last two years, I said yes to as much work as possible.  In a way, I hid from my cancer at work.  At work, I was so focused on my participants and students that I forgot about cancer.  At a time when I cried every day for fear of recurrence or because I was mourning my past pre-cancer life, work was a respite from my emotions and fears.  It worked for a while but by the end of June this year, I started to burn out.  I started procrastinating (more than usual) and didn’t want to do my lesson plans or prep work.  I dreaded going in each day if I wasn’t fully prepared.  I tried to find short cuts.

This is not me.  I am an over-achiever.  An A+ students.  I don’t do things half way.  I knew something had to change.

This summer, I planned on all of the things I was going to do for myself; see shows, movies, go to museums, take up the cello again…  But work took up more time than I anticipated.  The time I was going to take for myself was spent in preparation for working with very new immigrants.  The work was great, fulfilling.  I am proud of the work that I did with them.  I made a difference in their lives and learning.  But, I didn’t do the things that I said I’d do for myself.  There was no self-care.

As soon as I finished this job, the offers for fall work started coming in and it seemed that they wanted answers fast.  My heart started racing.  I felt panicked.  I chose to take some time for myself, go on vacation with my family, turn on my away message and meditate on what it was that I really wanted for myself.

Ah, there’s the problem.  What I really want for myself.

You see, I’m a people pleaser.  I want people to be my best friend, to see me as important, invaluable, easy to work with.  If it will make someone else happy or make their life or job easier, I will say yes even if it doesn’t bring me joy.  That’s how I roll.  That’s my mojo.

But as I approach 40 and after having endured cancer and raising a child, I’m starting to look at my life and wonder, what have I done for me lately?  What am I doing that feeds me, that challenges me, that makes me happy, that teaches me?  And the answer is, not a whole lot.

I love my work.  I mean, I LOVE MY WORK!  I don’t want to start hating it but if I keep saying yes to the kinds of work that don’t bring me joy just to get the paycheck, to make my employer happy, to work with a difficult group that no one else will work with even if it makes me miserable…that’s it.  I’ll burn out completely.  And then what?

So, I’ve made a big decision.  This really is huge for me.  I have decided that this year is going to be the year of “no.”  It makes me anxious just to write it hear but I feel like I need to learn how to start saying it.

Already this year, I’ve said, “no” to going back to a school where I was undervalued.  I’ve said no to work that was too far away from home.  I’ve said no to working with new organizations so I wouldn’t spread myself too thin (this was a hard one for me).  These “no’s” have been terrifying for me but I always hear about people saying no to things that don’t fulfill them and then, suddenly, they leave room for all of the opportunities that bring them joy.  That’s what I want for myself.

So, when I say that this is the year of “no,” what I’m trying to say is that I want to say yes to myself.  I want to leave room in my life for new experiences, to master a new skill, to take in some art, to make my health a priority, to be home to give my son dinner every night, to have some time for myself and to start serious work on my passion project (have you seen the post below and filled out the survey?).

Saying no to others will never be easy for me.  It just won’t.  I’m always afraid I will burn a bridge.  But I need to start doing it.  I need to grow.  I need to shape this “new normal.”  I hate thinking about that but I’m done fighting for the person I used to be.  She’s gone.  And as I shape my new self and my new life, I want it filled with joy.

I read this great article about the power of no.  Have you read it?

I found a bunch of memes and quotes and I couldn’t choose just one.  Sorry.  No, I’m not.  I love them!

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