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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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.