My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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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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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?


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The Never Enough Doctor

Two days ago I went to see my physiatrist.  He is the doctor who monitors my lymphedema.  When I first went to see him when I developed lymphedema, I liked him a lot.  I liked how he took a whole body and whole mind approach to my care.  He’s the one who helped me start therapy when he could see my distress and depression.  He made it happen.  He talked about helping me get a healthier lifestyle to help with cancer prevention.  But the last few times I saw him, I felt like he had an unrealistic view of my life and how I can fit lymphedema care and a healthy lifestyle into my every day.

To my young or youngish survivor friends, I don’t know if this happens to you as well but I have found that throughout my cancer journey there has been a lack of understanding of what it’s like to have cancer and be a working mother.  I know that the majority of patients that are seen are in their 50s, 60s, 70s and older.  50s and 60s is not old in my mind but these women are often at a different point in their lives.  They don’t (usually) have very young children.  They are not (always) building their careers.  To raise a small child and still try to define myself professionally and creatively while having cancer and lymphedema has been my greatest challenge.  I succeed sometimes but feel that I fail a lot.  That’s because I have way too many priorities.  I’ve written about this before.  What do I prioritize?  My health?  My finances? My career?  My son?  My mental health?  My emotional health?  My relationships?  My free time to be me?  I’m often overwhelmed by these questions.

Nevertheless, because I have gained a considerable amount of weight in the last few months, I have chosen to put my health front and center.  I’m unhappy looking in the mirror and unhappy with the way I feel.  I wrote two blog posts ago that I’m having a lot of difficulty losing the weight despite exercising 4-6 times a week and eating a plant based diet (not vegetarian, not vegan just way more veggies and fruits).

The last time I saw the “never enough doctor,” I was told that I needed to exercise more.  I couldn’t figure out when to find the time, especially with the work schedule my  husband had at the time.  I was only weeks out from my DIEP Flap and feeling like hell physically and emotionally.  He told me to “call on my community” to help me get it done.  What he didn’t understand was that my community is also made up of working mothers who have very little (if any) free time.  This pissed me off.

With that being said, in recent months my husband and I have discussed the importance of my health and what sacrifices we could make to help get my health back on track.  This means that my husband is not running as much (he loves to run) so that I have time to work out.  He has also put on weight because he is not running as much as he did previously.  I am also rarely putting my son to bed at night.  When he was in preschool only 2 days a week and I spent more time with him, this wasn’t a big deal.  But now he is in summer camp 5 days a week and will be starting full day pre-k in the fall.  My time with him is getting less and less.  With having to exercise at night, I’m sacrificing some of that time.  But I’m doing it not so that I have more minutes with him but more years.

I’m also sacrificing some major sleep so I can go out, get my work done, do the dishes, pump my arm and wrap it at night.  It’s a lot!

I’m also now seeing a nutritionist.  She agreed that my eating habits are healthy and we are monitoring my progress.

I have to say, I think I’m doing a hell of a lot here.  But according to the “never enough” doctor, I’m…well…not doing enough.

“How long are you exercising,” he asked me?

“35-40 minutes, 4-6 times a week,” I said,

“What exercise are you doing?”

“I’m run/walking and when I can’t get out, I’m doing a kickboxing video.”

He stopped, turned to me, looked me in the eyes.  “You really need to do more.”

“More?  More than 4-6 times a week,” I asked?

“No, not more times a week.  You really need to do 60 minutes.”

What???!!!!????

“You need to do more land based activities. Are you exercising in the gym?”

“No, I run outside.  I go to the park.”

“You really need to join a gym so that you can monitor your heart rate.  It’s more disciplined that way.”

“But,” I said, “I’m having a hard enough time finding the time to do the exercise I’m doing.  Back and forth to a gym is 45-1 hour plus an hour of working out, not to mention waiting on line for a machine…we’re talking at least 2 hours 4-6 times a week!  When am I going to do that?”

“Well, you do what you want to do but, if you really want to lose weight, this is the way you are going to do it.”

Fucking Asshole!!!!!!!!!!!!!!!!!

So, I’m finally figuring out a way to get exercise into my life, which is what he asked me to do last time.  I’m pumping my arm every night.  I’m wrapping most nights.  “You’re not wrapping during the day as well?”  WTF!!!!!!??????!!!!!!!  But instead of trying to find ways to get more exercise into my life (a pedometer to watch my heart rate and this thing called youtube which, I’m sure, has a lot of videos on how to do more effective work outs at home or outside), he just said I need to do the thing I can’t feasibly find the time to do.

It’s not enough.  It’s never, ever, ever enough.

His message: You can’t have cancer and lymphedema and still have a life.

What I say: There has to be a balance.  I can’t do it all and I can’t live for my condition.  What kind of existence is that?

He said that he doesn’t need to see me anymore but I can come back if I ever need anything.  I don’t think I would go back anyway.  I need to surround myself with people who will help me live with lymphedema and the side effects of cancer treatment, not for it.

 


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2 Year Cancerversary

It was two years ago that I walked into a breast surgeon’s office to have a lump in my right breast checked out.  I remember telling myself “It’s just a blocked milk duct.  You just finished breastfeeding.  They’re going to tell you it’s nothing.  You’re going to be fine.”  Your mind tells you one thing.  Your soul tells you the truth and prepares you for what is coming.  I remember the nurse or the resident or whoever she was looking at my sonogram.  Her face didn’t change.  It didn’t budge.  Her pupils did.  I remember them narrowing with knowledge.  “I’m sure it’s just a blocked duct,” she said.  “But I’m going to get the doctor.”

The doctor came in and looked for himself.  He wasn’t quite as adept at hiding what he was seeing.  He was all business.  After a quick look, he told me that he’d like to do 4 biopsies.  One for each lump he saw and two for my lymph nodes.  WHAT?????!!!!!!?????  My lymph nodes?  Why they hell would he want to check those?  The lump is in my breast!  There was so much I was about to learn.

I remember crying hysterically as he did those biopsies.  I couldn’t believe what was happening.  My life was changing and there I was, being punctured over and over again.  Once it was over he asked, “Do you have to be anywhere?  Can you stay for a mammogram?”  He called in a favor downstairs, asking if I could be seen right away, even though it was the end of the day.  He let me know that he’d have the results of some of my biopsies the next day, “just in time to ruin your weekend.”  He asked me to come back and to make sure someone was watching my son.  He then walked me down to get my mammogram.

The next day in his office, he said, “Well, it is cancer” as if we all knew it already and it was no big thing.  But it was a big thing.  It was a huge thing.  That day, my life changed forever.

That was two years ago but it feels like yesterday.  Time has gone so quickly yet so slowly.  It’s hard to explain.

At my one year cancerversary last year, I was still reeling from the trauma I had experiences both mentally and physically.  In my post commemorating the date, I chose to thank all of the people who helped me get through what was the worst year of my life.  I am still grateful to all of those people.

But this year is the year where I have tried to get back to living my life.  I have accomplished so much.  This year, I finished my weekly Herceptin treatments.  They didn’t really cause any side effects but they kept me going to the hospital every three weeks.  It’s hard to move on when you are constantly going to these appointments in the hospital but it kept me close to Nina, my chemo nurse who I always love to see.

Even though my lymphedema progressed into a non-reversible stage, I advocated for the kind of care I wanted.  I left NYU Rusk for physical therapy and found the amazing Cynthia Shechter at Shechtercare who is helping me learn to manage this condition.  It reminded me to trust my instincts and to never settle for sub-par quality of care.

I went back to work full time.  It was exhausting.  I still experience harsh fatigue and my body was still weak.  I also still have some lingering chemo brain.  It’s not horrible but I still forget to do things and can’t remember people’s names.  But I love my work and am glad that I can continue to do what I love to do.

I’ve tried to be a great mother to Oliver.  Many would say I accomplished that.  Being my own worst critic, I can think of a million things I did wrong or about all of the projects I didn’t get to do with him or all the places I wanted to take him, but there was never time.  But, he’s also so bright, funny and caring.  He did so well in his first year in school and grew so much.  I think I should take even just a little bit of credit for that.

This year has also been extremely challenging.  I had my DIEP Flap surgery.  I was warned that it was difficult to recover from but I didn’t quite believe it.  I should have listened.  I’ve never experienced that kind of pain before in my life.  I also underestimated how long it would take for me to recover.  Even though I went back to work after 6 weeks, I still feel like my body is healing.  I’m also still not used to the scars and dissatisfied with the results.  I know that it is a work in progress but, no matter what the plastic surgeon does, I will still be unhappy with the massive scarring on my body.  I just can’t get past it.

Emotionally, moving past cancer has been hard.  The good news is that I don’t cry every day anymore.  Up until about six months ago, I cried every day since my diagnosis.  That’s a lot of crying.  A lot of trauma.  I still think about cancer every day, several times a day but the thoughts and emotions are no longer paralyzing.

Cancer has made me feel stuck in life.  Right before I was diagnosed, I was starting to think about the next steps in my career.  I had to put that on hold, of course.  Now, I have no idea what I want.  I’m trying to work through all of this with a therapist but I’m having trouble moving on.  I’m still mourning and I’m trying to understand what this new normal is.

They say that each year, dealing with the aftermath of cancer gets easier and easier.  That one day, I won’t think about it all the time.  It will be a distant memory.  At two years post diagnosis, I don’t find this to be true.  I have my life and I’m so grateful to be able to do many of the things I love but I’m having trouble moving on.  It’s all still so raw.  I’m still so bitter an angry.  It doesn’t feel good.

I’m going to try to keep busy all day tomorrow.  Hopefully I won’t think too much about the significance of tomorrow’s date.  My hope for myself is that I find as much joy as possible.  Maybe I should do something nice for myself.  Get a mani/pedi or take a long walk and window shop.  I don’t know.  But what I do know is that I need to start turning this frown upside down.  I need more joy.  More life.  Or why did I fight so hard?

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