There is no way to write what I am about to write without it hurting someone’s feelings or making someone mad. I know because I have been trying for three years to come up with a way to write it and in three years, I have not succeeded. Keeping that in mind, here goes the thesis statement for this essay:
Fuck the pink ribbons. Fuck the Susan G. Komen Foundation. Fuck the No Make-up Selfies and the jokes about saving second base. Fuck the bumper stickers and the key chains and the pink Kleenex boxes and the titty pink spatulas. Fuck it all.
You want to honor my struggle? You want to raise awareness? Show up. Show the fuck up. Show up for women who don’t have access to decent, affordable, medical care. Show up for families living in poverty, on the unsafe side of town, where no one much cares if there is a coal plant in the backyard. Show up for funding research. Show up for science literacy in public education. Show up.
Show up for discovering why breast cancer rates are going through the roof. Show up for farming that doesn’t kill the land and good food that nourishes our bodies. Show up for clean water and clean air. Show up.
Show up for your own health and well-being. Take care of yourself. Embrace your body, with all its stretchmarks and cellulite and scars, because it is the only body you have and it has carried you this far and if you want it to get you through the next forty years, you’d better start loving it. Show up in your life. Use your God-given gifts. Stretch. Learn. Do. Be. Show up in your own heart. Forgive yourself. Love yourself. Be as kind to yourself as you are to others.
None of this is easy. It is a lot easier to participate in cutesy memes on Twitter or Facebook. It is easier to put on a pink t-shirt and a tutu and walk a 5k. It is easier because it doesn’t really cost us anything. We can frolic along and think everything is fine because we donated $1 to the Komen Foundation with our purchase at Krogers. Everything is not okay. Everything is not fine.
If we want better treatment options, we are going to have to make noise. If we want research dollars for Stage IV disease, my disease, we are going to have to make noise. If we want better options for reconstruction, for recovery, for anything, we are going to have to make noise.
I get the impulse to want to do something and not knowing what to do. It is overwhelming, this whole cancer thing. I know so many of you would have done anything to make the last three years of my life easier. I want you to know I felt that. I knew it. I know it, still. And I love you for it. I could not have made it without the love and support of my friends and family.
This disease is a nightmare at times, a long, long, nightmare. And it is my nightmare. Mine alone to walk through, mine alone to carry. Knowing I have people ready to prop me up, push me forward, catch me when I fall, it means all the world.
Nothing about breast cancer is pretty, pink, whimsical, cute, or silly. It was and is a fucking slog. Three years after diagnosis, there are days I feel like I am nothing more than a ball of associated side effects. I am disfigured. I am depleted. But I’m not dead. I’m not downhearted. I am alive, against all the odds, I am alive.
You want to honor my walk with cancer? Show up, for me and for yourself. Show up.
April 1, 2014 at 8:59 am
Well said! I hate pink and all it represents.
April 1, 2014 at 9:58 am
April 1, 2014 at 11:01 am
Amen. I’ve always found the whole concept revolting. Better a skull and crossbones as a symbol than a pink ribbon!
April 1, 2014 at 12:23 pm
I have thought this as well. This tells the story perfectly! I lost a dear friend to BC just as most others have and had panic attacks at Susan Komen walks trying to be a good sport instead of the bitch I felt like because I didn’t feel like the tu-tu or the ribbon or the wrist band……………I was and still am too pissed off at Cancer to mainstream it in a cute PR package. I mean its only been 10 years………………..
All good done is good. Anger can be as well. However, as I read this I am reminded that pink ribbon or not I haven’t parlayed that anger into any lasting benefit in honor of Leona. I will now. Thank you so much for this voice that gives rise to mine.
April 1, 2014 at 7:15 pm
I totally agree. I lost a good fiend to BC some years ago, and I hate the “Cuppa for Cancer” ( refuse to attend), “Pink Ribbon Breakfasts” etc! I do not understand why, in each country (even in each State or County) there is not just ONE charitable group collecting/raising money for BC? Surely just doing that would mean more money going to research, because then there would only be a need for ONE set of Admin staff to be paid for each State/County! Here in Australia, it is just getting silly – every retiring sportsperson seems to want a Charity with their name in it (no names, no pack drill, as they used to say in the Forces), and there are not many “popular”, easy-to-collect-for Causes left un-supported, so we do get a huge amount (comparatively speaking) of BC support groups. It is a pity there is no rule about how many groups are allowed per Cause. End of grizzle. Love and support to you.
April 1, 2014 at 7:58 pm
I am so sorry to read about the losses you all have suffered. I have lost many a good friend to cancer and it sucks and it will always suck and it never gets any easier. Thank you for taking the time to read my stuff and to comment. It means a tremendous amount.
April 1, 2014 at 7:17 pm
Sorry, that should have read good friend!
April 1, 2014 at 9:51 pm
Amen. Having had bc 5 times now, I hate to see October come around. I have Facebook friends that I “hide” for the month because I know they’re going to plaster their walls with bc awareness ribbons. I appreciate their concern, but hello? We all KNOW about bc. The awareness is there. Can we do something about it before more of us DIE? Fuck cancer, indeed.
Sending love from a Stage 3B sister.
April 2, 2014 at 11:06 am
Five times? Respect. I got mad respect for you.
April 2, 2014 at 9:16 am
Boosted this on Facebook. Will link to it from UM Insight. Totally awesome. Hugs….
April 2, 2014 at 11:06 am
Thank you! Your support is awesome.
April 2, 2014 at 11:56 am
thank you for writing this!
i agree wholeheartedly and have shared on FBland.
have a beautiful day!
April 2, 2014 at 10:31 pm
Well said sister! I’m almost 1 year post treatment… I have my 3 month check up next week…I catch myself holding my breath. Sending love and healing prayers your way.
April 2, 2014 at 11:03 pm
Good luck and best wishes to you.
April 3, 2014 at 7:09 am
Shared on FB. Thanks for saying much of what I haven’t found the words for!
I’m 2 years out from my double Mx/TRAM/DIEP. I’m in remission, but have lymphedema and near-constant pain. I am so fucking sick of all the pink and how “lucky” I am to “look so normal.”
April 3, 2014 at 10:29 am
I am sorry to read about your issues. Recovery is a pain in the ass. Thank you for taking the time to read and share. It means a tremendous amount to me.
April 3, 2014 at 10:45 am
Well said. Thanks for speaking the truth.
April 3, 2014 at 11:31 am
Pitch perfect. Just shared on twitter and on FB thanks to a friend who shared with me. At your side. And ready to show up in whatever way I can.
April 3, 2014 at 1:12 pm
Very well said. Thank you for putting it into words for the group of us who feel this way.
April 3, 2014 at 7:06 pm
Well said. More people need to do something to make a difference.
April 4, 2014 at 12:48 am
Complete, raw honesty. This post says it all, and thank you for this.
April 4, 2014 at 3:45 am
I am stage 4 bc with spread to liver… I agree to certain extent that the pink ribbon and tea parties etc all seem a little bit nauseous when I’m diying ….but like me my friends and family don’t know what else to do….I would love to do something that would really make a difference but don’t exactly know what, so I live my life and make it as full as possible (getting married in 4weeks) and I say to cancer “you can kiss my ass”, for today at least because I don’t know what tomorrow will bring. I start with my three girls and try to encourage them to respect and look after their bodies if they want them to last the distance, but like most young people they think they are gonna live forever. It’s difficult to put an old and wise head on young shoulders….
April 5, 2014 at 5:31 pm
Congratulations on your marriage Mary and living life to the fullest.
April 9, 2014 at 5:44 am
Congratulations on your marriage!!!!! I wish you LIFE!!!!!!!!!
April 4, 2014 at 7:53 am
Exactly. 10 yrs ago for me and being a Canadian means that I don’t have to fight for health care. I can’t imagine adding that into the mix. Keep writing!
April 5, 2014 at 5:28 pm
I have known three people with breast cancer. One was a girl who died in her late 20’s from the cancer. That was over 20 years ago . The other two, one of my best friends and my sister in law were the “lucky” ones (as if there is anything lucky about getting breast cancer). My friend’s cancer was found accidentally when they made her get a mammogram prior to a planned estrogen Rx for her menopause issues. They found a sub stage 1 breast cancer. My sister in law had a symptom that often indicates a later stage cancer, discharge and it also turned out to be in stage one.
Even with stage one cancers, both women went through a lot, my friend in particular. Post op lymph infections, caused in part by searching for cancer in the nodes that turned out not to be there, mercifully but the node and resulting arm issues are forever. A full, unexpected mastectomy (lumpectomy was planned) due to a still stage one but diffuse spattering of cancer cells in the breast. Oh, then there was the nearly lethal post op drug reaction. Small fry compared no doubt to those who have advanced cancers, double mastectomies, you name it BUT definitely NOT pink, pretty, cute, fun, or fluffy. I am pretty damn sure if I had breast cancer my response to “save second base” would be that this was not about second base, it was about my LIFE, thank you…
So, I see your point wholeheartedly and wish you the best in your journey with this thing. Thanks for the thoughts.
April 5, 2014 at 6:08 pm
I lost my mom to BC almost 4 years ago, and to this day the sight of “Pink Shit” makes me boil inside. I see the big corporate side of it all and wonder what good is really being done. You are totally right, it’s giving our time and being at the frontline with patients that matters and will make a difference, not buying a pink bracelet of the internet. As a nurse I cared for my mom at home and although the exhaustion almost killed me I wouldn’t trade a second of that time with her.
I wish you the best,
April 7, 2014 at 9:56 am
thank you for writing this. it has helped me to understand why I absolutely abhor the whole “pink” thing. I have watched my Mother when she was in her 50’s, battle the monster 3 times, losing in the end. I have lost my grandmother and a friend in her 40’s to it. And, My Daughter at age 25, was diagnosed and has had it twice already. I wore a “FUCK CANCER” bracelet to the hospital when she had her double mastectomy. Never mind the pink.
Fight on and Fuck Cancer.
April 7, 2014 at 11:01 am
That is a lot to deal with. It sucks. I am sorry.
April 7, 2014 at 11:30 pm
Your words are strong, inspiring and full of life. How I would love to see people stand up for clean air and health care and education. I know you have just encouraged many to do so.
April 16, 2014 at 10:23 am
The best thing people can do to help us Stage IV folks is donate to organizations that fund research in metastatic breast cancer METAvivor puts 100% of monies towards research. We need everyone to show up.
April 16, 2014 at 10:49 am
You go, girl!
April 16, 2014 at 3:37 pm
Thank you thank you thank you.
A huge ball of side effects pretty much sums up my experience.
I hope for more treatments available in our future but with every new treatment, there is something it takes away … It’s like death by a thousand cuts.
April 21, 2014 at 12:13 pm
Brilliant. You are 100% correct. What we need are for the masses to show up – at city hall, at Parliament Hill in Ottawa and at Capitol Hill in Washington, at the front doors of big pharma and big agriculture, big bank and Big Brother, and say “fuck you and your money-loving, environment killing, humanity ignoring practices”.
I hope what you have written helps to inspire people to show up, in ways big and small thank you, and I wish you strength and courage in your battle.
April 21, 2014 at 1:54 pm
This would go nicely on a t-shirt:
â€œfuck you and your money-loving, environment killing, humanity ignoring practicesâ€
June 5, 2014 at 11:37 pm
Powerful piece. Thank you. Check out http://www.bcaction.org/. They are doing great work. (I’m not with them, but have a wonderful friend there passionate about the work.)
October 12, 2015 at 9:17 pm
I was just watching Monday Night Football and commented how I hate all the pink “accessories” the players wear. ALL THE MONEY!!!! I’m sure it’s replaced each year…..all the money could be helping find better treatment or a cure.
Thank you for being so brave. I hope you find your way to the other side of cancer and live a long, awesome life!
October 13, 2015 at 10:50 pm
Wow. Thank you for sharing your nightmare. It’s scary, and it’s harsh, but it’s real.
Today (October 13) is national metastatic breast cancer day. I’ve shown up â€“ for you and for me â€“ and here’s my story.
My name is Janna, and IAmNotSusan. I do not have metastatic breast cancer, but I have two friends who have opened my eyes to the hardships of an MBC “lifer”: Beth Caldwell and Beth Calabotta. I’ve started to read many of your blog posts â€“ and I will eventually read them all. You have shared raw thoughts that get under my skin, shake me and wake me, and really help me to begin to TRY to understand, but I can’t possibly wrap my head around just how awful it is to have stage IV breast cancer. You, and Beth Caldwell, and Beth Calabotta â€“ you all inspire me to live, to give my talents freely for causes that really matter, and to cherish my health â€“ because every day of YOUR lives is a blessing.
In honor of Beth and Beth â€“ and now you, and every #IAmSusan man and woman who lives every day, thriving while dying â€“ I created a campaign to raise funds for METAvivor.org
METAvivor is run solely by volunteers and works to obtain grants and corporate sponsors to support operational expenses. This ensures that donations can be entirely dedicated to grants that fund the cutting edge research that will ultimately save lives. To date, the organization is comprised of just 7 volunteers who all have MBC. Many of them also have full-time jobs, in addition to all that they have taken on to get their organization off the ground. Why should people dying of cancer have to fight the battle alone? I’m healthy, so I decided to become volunteer #8.
I am selling T-shirts with a snowflake made of METAvivor ribbons. ALL proceeds from the sale of the shirts will be donated directly to METAvivor.org, and 100% of the the money will be used for metastatic research. Visit http://www.Booster.com/METAvivor to purchase a shirt and support the cause.
METAvivor is a fantastic organization that is doing the RIGHT thing. Please tell all of your friends and family about this fundraiser. You can SHARE the (public) post from either Beth Caldwell or Beth Calabotta’s Facebook page. Please “like” the post, as well. Let’s work together to get METAvivor’s name out there! #GoViral
God bless you. You are an amazing woman. Keep fighting.
One last thought: Fuck the empty pink promises! Fuck the not-so-little pink lies!