Breast Cancer Awareness? Let’s Get Real

It’s only September, and already I’m sick of Pinktober. Already, there’s been ‘sexy’ pink fundraising idiocy, stupid Facebook ‘awareness’ games, and nine pages of newly execrable pink wearables and ceramic tchotchkes on the Bradford Exchange site. Who buys this crap?

There was a #PinkOFF hashtag circulating on Twitter in the past few years. I say, let’s revive it. Because I’m already pinked off.

In an attempt to introduce a note of reality into the whole awareness thing, I’m going to describe some real-life folks with breast cancer. We are not the “A list” people. You know, the people who take up skydiving after treatment, and go on book tours to advertise the inspirational tomes they’ve written about how skydiving gave them back their lives after breast cancer. Frankly, the rest of us are way too exhausted for any of that, nor can we afford the skydiving lessons or the cross-continental plane fares. We don’t feel like warriors or heroes, and we’re ‘survivors’ only in the sense that, so far, we’re still breathing. We don’t walk around decked out in pink ribbon jewelry or pink sweat suits so that we’re easily identifiable. Some of us blog, when we have the energy. But, in the land of happy, pretty-in-pink breast cancer awareness, we’re not represented. We’re the silent majority, as it were. We’re on the “other” list. And trust me — it’s a much longer list.

What we represent is the reality of breast cancer. So, without further ado, here’s a short list of some of us:

  • Seven years after diagnosis and treatment, I’m still tired. Still broke because I haven’t been able to work full-time since. Still have fibrotic scar tissue from surgery and radiation. Still have pain, muscle spasms, restricted motion. Still foggy. Still constantly juggling to pay the bills. But I consider myself fortunate. At least I can work. And so far, I’m still NED — pending my next mammogram in a few weeks.
  • There’s a young woman I’ve known for several years now who, after discovering she was BRCA positive, had a preventative bilateral mastectomy and reconstruction. Swear to god, she developed every post-op complication known to womankind — flap failure, tissue necrosis, blood clots, adhesive capsulitis, infections, you name it. The end results, after several hospitalizations and surgeries, are still uneven and imperfect. She’s still tired. She’s still on a blood thinner. She’s still in pain. But she’s a mom and a wife, and her family are just glad she’s still alive.
  • Then there’s the woman who is an artist, who developed severe peripheral neuropathy in her hands after chemotherapy. Actually, I know a number of folks who fit this description. One of them had to give up making art entirely. One of them, after years of unrelieved pain despite trying an array of meds, finally found something that helps, and manages to work as an artist, although it’s still a struggle. One of them had to stop drawing, because it hurt too much, and took up photography, which hurt less, although she’s too tired to do enough work to make a living, so she scrapes by on disability.
  • Speaking of giving up doing the things you love, there’s my friend who recently had to give up a long, successful, much-loved professional career because of the pain, exhaustion, and complications caused by stage IV breast cancer. It’s hard to have a life when you seem to spend half of it in the hospital and the other half recovering from being in the hospital.
  • Then there’s another artist friend who has stage IV breast cancer. Before she had breast cancer, she was an accomplished, imaginative photographer, had gallery shows, the whole nine yards. Not now. Now, when she’s not having more surgery or radiation or chemotherapy, she still occasionally manages to take some fabulous photos, if she has the time or energy after helping to look after an aging parent, as well as her very young grandchildren.
  • Then there’s the woman who was treated for Hodgkin’s lymphoma in her early twenties. Years after treatment, she developed life-threatening coronary artery blockage due to the extensive radiation she received. She survived two stent placements by angioplasty, only to end up later being diagnosed with breast cancer. Oy. You don’t get a treatment discount for developing a second kind of cancer.
  • Then there’s my friend with stage IV breast cancer who was recently diagnosed with a different, and rare, kind of cancer. If her kidneys are cooperating, she may be getting her first chemo infusion for that second cancer as I type this. Fingers crossed.

I could go on. There’s my friend with metastatic breast cancer whose husband has recurring melanoma. There’s my friend who finished treatment for breast cancer, whose mother was then diagnosed with metastatic breast cancer. There’s my friend whose husband was such a shit while she was being treated for breast cancer, she had to get a divorce. There’s my friend who had breast cancer who later developed Chronic Myeloid Leukemia. None of us are likely to appear on the Today Show or be asked to tell our stories at a Komen fundraiser. But if anyone would like to raise some genuine breast cancer awareness next month, maybe we should. I’m not holding my breath though. And I won’t be wearing pink.

This entry was written by Kathi, posted on Monday, September 07, 2015 at 02:09 pm, filed under Attitude, Fighting the Pink Peril, Metastastatic Breast Cancer and tagged , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

17 Responses to “Breast Cancer Awareness? Let’s Get Real”

  1. Your post is spot on! There are many of us who don’t feel like celebrating. There are also those who are having a very hard time, including my dear friend who is now stage 4 (4 organs involved after been told she was “cured” from her breast cancer). We are all excluded — at least I feel we are. I agree with you we should be doing a different type of awareness. Share some truths about breast cancer and what it does to patients (and what treatments do too!).

    I will not be wearing any pink either.

  2. There are so many of us out there, just trying to get from one day to the next, Rebecca, I don’t understand how we are ignored by what passes for awareness campaigns these days. How are you, BTW? I need to visit your blog and catch up.

  3. I am doing alright these days, thank you for asking. Just realized I have too many doctors’ appts. and I am sick of them all. But I am still alive and kicking, and for that I am grateful.

  4. Oh, I know how that feels, Rebecca! The first time I saw my primary care doctor, who is an old friend, after all the cancer kerfuffel, I told him not to take it personally, but that I was beginning to hate seeing doctors. He smiled & said he understood. His wife had breast cancer, too, so he’d been down that road with her. I’m glad you’re alright. Alright is okay. xo

  5. So very true! After reading a few of your entries, I thought: My God, she could be describing me. And I don’t mean the skydiving, traveling survivor.

  6. No skydiving for me either, Eileen! LOL. That’s the thing about our stories. I had specific people in mind for each of those descriptions, but they are so universal, too.

  7. The colors for Metastatic Breast Cancer is not only pink, but green and teal as well. I wear pink, even when it isn’t October. I don’t need to be reminded with stupid e-mails and games about breast cancer, because I know. I have breast cancer and am reminded every day. I am reminded every month when I go for my injections and doctor’s appointment.

  8. That’s the thing, Alison, isn’t it? When you live with breast cancer every day, you are certainly ‘aware.’ Now, if we can get folks to be more aware of that reality, and not promote all the stupid nonsense…

  9. One of the invisible masses its been 3 years after my diagnosis 2b I did group I never got feeling better.
    Family friend only have so much patience for illness. After the first year they were like you not have cancer anymore you are just faking it.

    By the 2nd year I kept saying I don’t feel good hips hurting. Finally they find it yes in my hip

    Most of my family wont even talk to me any more my children 26 24 22 said I died 3 years ago. I am not their rock of a mother and they are left with is thing that rages and scream and they are embarrassed of.

    Resembled because I have no filter anymore embarrassed cause I am poor and have to live in places I have to live embarrassed because I have a go fund me page that make 62.00 total cause what if people see.

    I can’t die fast enough for some of these people, I am inconvenient, truth to the whole world.

    The saddest thing about it all was 4 years ago I didn’t think breast cancer kill you so I didn’t bother to have that bump checked out till it was showing thru my shirt.
    It didn’t hurt show I didn’t think it was cancer, I wasn’t sick so I didn’t think it was cancer. I thought even if it is cancer no body dies from that anymore ……. right ….. that’s why we celebrate Oct. …. Wrong and Ignorant and my misunderstanding will kill me.

    Who am I nobody that’s who.

  10. Oh, Cynthia, you are not nobody and you are not alone. There are thousands of us like you. I’m sorry so many members of your family don’t understand. But a lot of us know how that feels, too. You touch on one of the worst things about Pinktober, that people end up thinking breast cancer isn’t deadly anymore, when it’s just as deadly as ever. I hate that it’s ruined your birthday, too. But I’m glad you’re here to have one. Hugs to you.

  11. And I wont wear pink in Oct. I will wear red or black and Pink was my favorite color Oct 7th my birthday.

    Ruin my color and my birthday stupid cancer.

  12. Hi Kathi,
    I love this post. There are still days when I feel like I’m doing this cancer thing all wrong because I know I am not and never will be living up to some fake ‘gold (or should I say pink) standard’ of survivorship. I am not on that “A” list either. Like so many of us, I am still trying to regain my footing and some days it’s still tough, very tough. And that whole warrior, hero thing, well, don’t get me started on that. Cancer realities, that’s what you have articulated so well with your examples of real people. Thank you. And btw, I still love pink, but in October, not so much. xo

  13. Thanks, Nancy. I know almost no one of us who fits the A list. And as far as colors go, I love the pink azaleas that bloom in front of my house in the spring. But orange is the color of October for me. 😉

  14. Thank you Kathy,

    It’s so frustrating you hear cancer and your life is taken over. The 1st time they don’t really tell you. Actually statically 33% of you will die because it will come back usually incurable for that many people.
    No they say you have 90% changes of beating this.

    1 in 8 women will get BC
    7 to 10 % bc is found at a stage 4.
    depending on your stage 0-4 you have a 90 to 20% five year life can spell
    the one who do live 33% will get it again at stage 4.

    Whats to celebrate I don’t think if you get bc your changes are better that before awareness.

    Seems to me they just hiding a whole lot of death behind pink wall.

  15. You have done an amazing service by writing this – especially for women whose families and friends have stopped listening…who are just plain tired of the whole disease. Even those of us pronounced cured know the doctor is watching those labs, hoping for us as we anticipate an upcoming mammo.

  16. Thanks, Margaret, for your kind comments. Sorry for the late reply. I just had my mamm today, a 3D one this time, so I’ve been a little distracted!!! Oh, for the days when they were routine & always negative….

  17. Hi Kathi,

    I’m playing catchup on your excellent blog, and boy did this post resonate with me. You’re right: we are the silent majority. Most of the stories are not feel-good crapola. Why won’t our culture recognize that breast cancer is not a positive experience?

    And I’ll share my story (even though you know it): I have body image issues and PTSD. The collateral damage on my psyche is irreversible. Oh and chemobrain. That sucks.

    I’m sorry you have suffered so much. It’s not fair that the public not recognize us in the silent majority.

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