My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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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!

no-2no-3no-4no-5no-6no-7no-8


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Passion Project

You know that I would never say that cancer was a gift.  You know I would be caught dead even thinking that good things (besides you guys of course) can come from cancer.  Never, never, never, never, never!  I never understood that point of view and while I respect it, I don’t connect with it.  When I think of the good things in my life, I think that they happened in spite of cancer, not because of it.  I don’t give cancer credit for anything except for all of the pain it has caused me, my family and friends.  This doesn’t mean that I can’t let my experience with cancer inspire me to do some good in the world.

Many of you may know this about me (some of you might not) but my passion in life is the intersection of theatre and storytelling.  I love hearing a good story.  If I could just talk to people all day and hear about their lives, I’d be happy.  If I could turn their stories into a piece of theatre, I’d be living my passion.

This summer, when I took my long blogging break, I wasn’t just on vacation.  I took a week long intensive where I immersed myself in interview based/documentary theatre with the Ping Chong + Company.  Ping Chong’s mission is to produce “theatrical works addressing the important cultural and civic issues of our times, striving to reach the widest audiences with the greatest level of artistic innovation and social integrity.”  These can be done by using oral history projects or fuller scale, multidisciplinary productions.  For me, oral history is where it’s at, and I learned how to interview individuals and turn their stories into theatre using his particular technique while infusing my own.

The goal of this is an idea that’s been brewing in my mind for a very long time and that I have finally started to pursue.  I would like to create a theatrical piece (this can mean many things and look different ways) based on stories told by breast cancer survivors, caregivers, doctors, nurses, administrators, researchers, etc…  If there is anything that I have learned from blogging and from reading everything that you all write, it’s that we all have powerful stories to tell.  We are a community of strong women and men who share a common experience.  And while we share a cancer diagnosis, the way we experience it, the way our families experience it, our treatment, our survivorship, our faith, our outlook are all unique.  This has caused men and women our community to form close bonds.  It has also caused tension and disagreement.

I believe that everyone’s story has worth and that if we listen to each other use theatre as a way to put ourselves in other people’s shoes, we can strengthen our community, learn from each other, gain a deeper understanding of the uniqueness of a common experience and develop a great sense of empathy for everyone who is in the breast cancer world.

Where am I with all of this?  I’m at the very beginning.  This blog post here is the first step I am taking into making this idea become a reality.

I have a seven year plan that I worked out with my therapist.

  1. Within the next few months, I am organizing myself.  I am going to take classes in grant writing and looking for funding for this project.  I’m going to try to become more computer savvy so I can organize my notes better.  I want to find out and speak to people who may have done similar work.  I want to start getting questions together for a first step interviewing process.
  2. The two year plan is to have my first production with men and women affected by breast cancer.  This included survivors, caregivers, widows and widowers, doctors, nurses, administrators, researchers, etc…  A production can be a reading for a small group of friends or can be a mounted theatrical piece where a wider audience is invited.
  3. The five-seven year plan is that this work continues and evolves.  I would like it to tour hospitals around the country and around the world.  I would also like to do workshops where men and women who would like to participate can tell there story.

This is where I’m at right now.  Of course, things can change a bit but I’m excited to get the first step started.  So this is where you all come in.  I would love it if you answered these questions.

1. If someone asked you to participate in a project of this kind, why would you or why would you not want to participate (participation can look like sharing your story in an interview only, sharing your story in a group setting using theatrical techniques or sharing your story in a group setting with the intent of creating a theatrical sharing or performance)?

2. Do you know of anyone who has done a similar project (theatre, art, photography, dance, etc…) that you think would be willing to speak to me about their experience?

3. If you were to see a show about breast cancer what would you like to see or what would you expect to see?

Just three questions for now.  I am also putting these questions in a survey monkey.  Feel free to use that or to comment below if you are more comfortable.  

I am so excited to get started and to hear your thoughts!!!!!

dance

 

 


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Goodnight, Sweetheart

Last night was the last time I put Oliver to bed as a baby.  He’s still my baby, of course, but today he started pre-k and will be going to school five days a week from now until….  As I put him to bed, I was aware of all of the changes we are about to experience.  He is going to learn so much and make so many new friends.  Last night I knew that as I took him to school in the morning, I was setting him up for his next stage of independence from me and Ken.  So, I held him a little longer and nuzzled his curls on my nose, as I like to do, long after he fell asleep.  He didn’t want me to sing him songs but, instead, asked nervous questions about his first day.  “What do I do if I don’t understand the teacher?  What do I do if I don’t understand what the teacher tells me to do?  What happens if the teacher sends me home and puts me on the train by myself?”  He was worried.  I calmed his fears and he woke up this morning with a crazy, wild energy and anticipation to see his new school and meet his teachers.

We started off by creating his pre-k poster of some of his favorite things this year.  He was happy to answer all of them.

This is what he looked like last year at the same time.  Can you believe how much he has grown?

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The school is really close, less than a mile away and only two stops on the bus!  Ken was working so I had to bring him and a suitcase worth of school supplies with me.  You see the suit case in the picture but not the other bag I had on my shoulder.  So much stuff!

The school, which has over 500 pre-k students this year had the children come in two groups.  We were the afternoon group.  The good thing was that one of Oliver’s best friends was in the afternoon group.  They are in different classes but that didn’t seem to get them down.

Once we got in, we found our classroom.  Oliver has two very sweet teachers.  They had toys set up for the children to play with and Oliver ran over without taking his backpack off and made himself at home.

He was doing so well so I said a quick goodbye.  Funnily enough, I didn’t cry!  That’s so unlike me!  Maybe because I had an hour and a half to myself that I decided to spend with some other parents I knew at a local cafe.  I had the most delicious blueberry/hibiscus iced tea!!!!

When I came to pick Oliver up, his teacher was finishing up a book.  When it was done, the children noticed all of the parents in the room and ran to us.  Class dismissed?  I went to the teacher to thank her and she told me that Oliver made a prediction about the book!  An “A” student on day one!  That’s my boy!!!!!

We left and got lunch with his friend at a local restaurant and then went to a playground to burn some energy.  As we walked home, we stopped at another cafe and Oliver looked at me with those sweet eyes of his and pointed to a pink cupcake.  How can I refuse him on his first day of pre-k?

Today, my baby became a little boy.   He started real school.  He’s just going to keep getting bigger and older.  I can’t even!


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Two Year Mastectaversary

It’s hard to believe that two years ago, at this moment, doctors were standing over me and saving my life by amputating my breast.  I still remember the fear I felt that morning like it was yesterday.  It might as well have been yesterday.  But it’s been two whole years and it’s hard to wrap my brain around that.

Even though it’s been two years and I have had my initial DIEP Flap reconstruction, I still have more “tweaking” surgeries to go.  I want my plastic surgeon to fix the shape of my breast.  The symmetry is good and I even think the size but it’s still round and flat instead of cone shaped.  I also have to have nipple put on and I’m trying to decide if I want a realistic nipple tattoo or something a little more artsy and decorative.

So, the journey (I know some of you hate that word, I’m ok with it) is not over.  Far from it.  But look how far I’ve come?

Here is my mastectomy story.

This is why I chose a single over a double mastectomy.

A hospital packing list for your mastectomy.

How long did it take for you to finish all of your reconstruction surgeries?

Did you opt to go for a natural tattoo of the aureola or for something artsy and decorative?  How did you make that decision.

 

 


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Hey, Littlebs, Where Have Ya Been?

Hello everyone?  Did you miss me the way I missed you?  It’s been a few weeks since my last blog post.  I’ve had a really exciting few weeks.  First, I took a week long class in interview based/documentary theatre.  It was amazing.  But more on that in my next blog post (exciting stuff!!!!).

Then me, Ken and Oliver took a trip to the midwest.  We wanted to visit Ken’s sister who now lives with her wife in Madison, Wisconsin so we decided to make a vacation out of it.  We flew into Chicago, spent two days there, then rented a car and drove to Door County, WI, and ended in Madison.  There were so many highlights I want to share.  Again, there will be a multitude of Oliver pictures.  We did so much during this vacation and I feel like I need a vacation from my vacation.  But I always feel that way.  There’s always so much I want to do and I never want to miss out.  So, here is our trip from beginning to end.  You can click on each image to see what we did!

Day 1: Chicago – Railroads, Millennium Park, Trains, Lake Michigan and The Aquarium

On day 1, Ken and I also went to the most amazing restaurant, Alinea.  It’s one of the top restaurants in the world and Ken has been wanting to go for as long as I can remember.  You can watch a documentary about this chef of Chef’s Table on Netflix.  He’s a genius.  Here, we are eating a balloon made out of strawberry taffy, filled with helium.  You can eat the string too!!!

Day 2: Chicago – Neighborhood Exploring, Murals, Pie, River Walk, Navy Pier

Day 3 was a travel day to Door County, WI but because we had a car rental mishap, we lost the day.  But thankfully, we got there safely in the end.

Day 4: Door County, WI – Rainy Day, Lighthouse Exploring, Rough Lake Beaches.

Day 5: Door County, WI – Beaches, Cliffs, The Clear Water of Lake Michigan

On Day 6, we traveled to Madison.  On the way we stopped for a cheese tasting and at night, with Ken’s sister, we went to a Friday Fish Fry and I tasted my first fried cheese curds.  Nomnomnom!!!!

Day 7: Madison, WI – Farmer’s Market, Children’s Museum, Capital Building

Day 8: Madison, WI – Exploring Madison

Day 9:  Madison, WI – Last Day.  I didn’t take too many pictures this day.  We mostly explored again but we got super tired and stayed low key.

So, this is what I’ve been up to.  If you actually looked at all of these pictures, you are my hero.

Happy Labor Day, everyone!!!  Can you believe summer is over?