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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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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