My Little Bs Have the Big C

A Breast Cancer Blog For Young Women

Life After Breast Cancer: The Other Side Of Pink

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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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16 thoughts on “Life After Breast Cancer: The Other Side Of Pink

  1. Beautifully written. This week I am 3 years post diagnosis, and can relate to much of what you have said. For sure the first year post treatments I was a bit blindsided by how much emotional bleck that I needed to wade through, this year has seen anxiety- which was related to a drug I was on. My life, my brain, my body are so different now- I still haven’t really figured out how to be normal, or even what that possibly means post cancering. There is definitely a whole tribe of us.
    Xo iris

  2. Thanks for such an honest account xx

  3. I have terminal prostate cancer. I don’t think there is ever a return to normal as it was. And those people you talk about who are ok and soldiering on – I think it’s a myth they create for themselves. I don’t think the anxiety ever goes away, just lessens. Maybe after years or so it’s really low – but still there.

    I don’t think you’re alone in this I think you’re in the vast majority. Cancer is not a blessing. It changes you forever. Some of the changes are good, but on balance it’s a bad deal.

    • Sometimes I feel like I’m in the minority. But I think it is because people feel like they have to be positive and grateful. That’s the narrative we’re fed. Thank you for reading!

      • I don’t think you’re in the minority at all. Everyone pretends they’re fine because that’s what’s expected. I hold Komen partly responsible for this attitude and indirectly promoting breast cancer as the “good” cancer to get if you’re going to get cancer.

  4. Greetings from Colorado!
    This post really resonated with me this morning. I just finished radiation last week and I wish I could feel celebratory about it, but I don’t. I feel tired and so worried about the future. I feel like I’m turning into a hypochondriac because with every little ache my mind jumps to “it’s back”. It helps to read about your experience and know I’m not alone. Thank you so much. Next step on this journey: find a therapist to get my head on straight.

    • Hello, Colorado!!! I’m glad this post resonated with you. I can wholeheartedly recommend therapy. It has helped me deal with things so much. I’m much less anxious than I was. I hope you are healing.

  5. Hi Carrie,
    I am six years post diagnosis, and I still have so much to figure out; but I know for me anyway, there is no going back. I am not a better person since cancer, I continue to struggle with long term side effects from treatment and there are days when I still cannot believe this is my life now and yes, I sure as heck still think about cancer every day. One thing I finally learned is that I am allowed to feel many emotions all at the same time. I can be pissed off and at the same time be eternally grateful to still be on the planet. Knowing we aren’t alone in this cancer maze helps so much. Thank you for being part of this amazing online community of support. And thank you for this wonderful, honest post.

    • Yes, the dichotomy of being pissed and being grateful…I know it well. It’s an odd feeling and difficult to explain to people. But that’s exactly what it is. Thank you for reading!!!

  6. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  7. So, so true. Carrie. It’s been eight years for me, and I still don’t feel ‘normal,’ and realize I never will. These days, I cherish those rare days, hours, minutes when I feel something like ‘normal.’ xoxo, Kathi

  8. Carrie, so many of us can relate to how you feel. I do miss the good old days but I no longer pressure myself to be there because of the person that I am. I am a realist who has a complicated relationhsip with hope. It def. sucks to be in our position — feel stuck in so many ways. But it’s very important for us to share our truth so others don’t feel alone. This is the type of awareness we need. Thank you for being honest about how you feel. I don’t feel so alone. xoxo

    • Thank you, Rebecca! I love that the pressure is no longer there for you. I don’t pressure myself but I feel like my husband struggles with the loss of our normal. It’s hard. I hope you are doing well

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