My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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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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8 Comments

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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Added A Contact Info Page

Hi friends!  I have received messages from some of you asking me how to get your story based on my last post.  Feel free to either leave it in the comment section of the post, comment on my facebook page or email me.  I have added a contact info tab with a shiny new email address just for this blog!  I’d love to hear from all of you!  Let’s share stories and strengthen our community!!!

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