Cancer Was Not a Gift & It Didn't Make Me a Better Person

Exposing Metastatic Breast Cancer & Advocating for Change

As I mentioned in my previous post, I have a bunch of goals for my memoir. One of my primary goals is to further expose metastatic breast cancer for what it is – horrible, deadly, under-discussed and massively underfunded. I share candidly about my family’s experience with metastatic breast cancer in my memoir, Cancer Was Not a Gift & It Didn’t Make Me a Better Person:  A memoir about cancer as I know it, because too often metastatic disease is not talked about at all, and there is not nearly enough money dedicated to research specific to metastatic disease. 

I hold major players like Komen (but there are many others and there is plenty of “blame” to go around) at least partly responsible for this “sin of omission.”

It’s inexcusable that the very segment of the breast cancer community such organizations should be working hardest to support, the metastatic community, has so often and for too long been pretty much left on the sidelines. This is unacceptable and is no longer being tolerated. More and more advocates are becoming more and more vocal, as they should.

Why did I choose to share candidly about my family’s experience with metastatic breast cancer?

Because I want readers who don’t know about metastatic disease to come away with some idea of how this disease impacts a family. Sharing equals advocacy. Advocacy will someday (soon I hope) equal MORE research specific to metastatic disease. Research will eventually equal less harsh treatments and extended life expectancy for those dealing with metastatic disease. And at the top of the wish list, of course, progress we achieve through research will hopefully some day ultimately halt or prevent metastasis altogether.

Women and men dealing with metastatic breast cancer deserve more years, not just more months that are too often filled with miserable side effects.

In my memoir, I did not sugarcoat my experience as a daughter with a mother diagnosed with metastatic breast cancer (or my own cancer experience, for that matter). In fact, I’m still a little nervous about the reaction some family members might have to all I shared. I could not share my cancer story without also sharing my mother’s. They are intricately intertwined for obvious and not so obvious reasons. I’m pretty confident my mother would have been totally fine with me telling it like it was. That’s the kind of person she was – very open to discussing her cancer.

Back to my goals…

In addition to sharing about my family’s reality with metastatic breast cancer, I also hope to start discussions about end of life issues.

Dying, death and grief are hard topics for sure, but this is exactly why we need to have such discussions.

How will there ever be death with dignity for everyone if we don’t talk more openly about dying and death?

How will we ever learn to give permission to ourselves (and others) to grieve in our own time and in our own ways if we don’t talk about it?

So again, writing my memoir was/is mostly about advocacy.

Finally, I will donate 10% of my book’s profits to organizations dedicated to educating the public about metastatic breast cancer, supporting those dealing with metastatic disease and funding research specific to metastatic disease. Presently, I am thinking about METAvivor and Metastatic Breast Cancer Network. I fully realize there won’t be truckloads of dollars coming from the sale of my little book, but small amounts add up too. And I intend to use whatever platforms I have.

What about you?

What will you do today (or any day) to help others better understand metastatic breast cancer and the need for more research specific to it?

When did you first learn what metastatic breast cancer is?

#MetsMonday #dontignorestageiv

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Cancer Was Not a Gift

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17 thoughts on “Exposing Metastatic Breast Cancer & Advocating for Change

  1. I was only 14 when I first learned about metastatic breast cancer. Not sure now if the word metastatic was actually used, but I sure knew what it meant that my grandmother’s breast cancer had spread to her bones and other organs. In her case, it was metastatic before she was diagnosed. At that time, treatment was being sent home with pain pills, that is, being sent home to die. A few years later, I lost a music teacher to metastasized breast cancer. That time I know I heard the words metastasized and recurrence.
    I learned that women sometimes lost breasts to cancer very young, due to an aunt with breast cancer. But, it took my grandmother’s death to realize they sometimes died from it.
    For too many of us, the story of breast cancer is multi-generational.

    1. Hi Elizabeth, It’s so sad to read how you were introduced to cancer’s reality at such a young age and that so many others continue to be introduced to it every single day as well. That must have been a tough, emotional time for you when your grandmother was sent home to die. Heartbreaking. And then your teacher… so very sad. You have learned the lessons of loss all too well. And yes, for many of us the story of loss is multi-generational. Thank you for sharing. xx

  2. My life everyday is trying to educate people about metastatic disease and living with stage IV breast cancer. I never planned on becoming a stage IV advocate – but it turns out that was the path chosen for me, so I roll with it. I have the same hope that the more we talk about it, the more money will go into metastatic research and hopefully a cure can be found.

    1. Mandi, You never planned to be a stage IV advocate. No kidding! It’s not something anyone imagines herself being. You are doing a wonderful job educating so many about this disease. I hate that you are metastatic yourself. I’m following your blog and know how rough things are for you right now. But then again, I probably have no idea, right? Thank you for all you do to educate us all. Keep sharing your story. Your voice is certainly needed in this cancer mess. You’ll be in my thoughts. Thank you for reading and sharing.

  3. At last I got a kindle copy via Amazon Australia… I look forward to reading ..till I started to read peoples blogs, websites and FB pages I had no idea of the impact of Metestatic Breast Cancer…. I had always believed that BC was curable….. This sadly is not true… A few weeks ago I lost a friend who I met in hospital to MBC her children were 3&5 years old …. This breaks my heart these women are often so young… I had no idea about the years remaining on chemo, radiation and side effects and still face death… Every $ that goes to research, every story and every death must start to make an impact on research… People need to know how badly research is needed… Thanks Nancy for haring your story… I will have some tissues ready!!!

    1. Helen, Thank you so much. I look forward to your thoughts on it. I am very sorry to hear about your friend. It’s heartbreaking. You are so right about that sorely needed research. Someday soon I hope, the number of women and men dying from mbc will no longer be 40,000 a year in the US alone. People do need to realize how badly research is needed. The answers will only come through research. Thank you again, Helen. I hope you’re doing alright. xx

  4. Nancy, thank you for speaking on behalf of all of us – regardless of our BC stage, the outcome would impact everyone, even those who haven’t been diagnosed yet…and their love ones. I think one of the struggles is that most people refuse to expose themselves to cancer unless they necessarily have to. I was one of those people, although I started to expose myself pretty early due to my family history. I think it is great that you shared both of your stories because people need to understand that BC is a very complex disease and just because we catch it “early” it doesn’t mean we are 100% safe. The more people know the facts, the more seriously they’ll take it, therefore, the more research (hopefully). I don’t think BC is taken seriously enough by society, for the most part. Maybe I am wrong.

    My diagnosis has allowed me to educate more about MBC. I take every opportunity I can to talk about it. For example, I am undergoing therapy for my hip (hoping this pain goes away!) and my therapist had to know about my diagnosis. He said, “but now you’re fine right?” I took this opportunity to educate him although I think I left him with an impression of me being “negative” – another challenge when it comes to educating about cancer.

    I first found out about MBC through my great-aunt, about 7 years ago. I thought cancer was just one disease and it didn’t matter when you caught it. My aunt’s diagnosis taught me so much but I was forced to learn.

    I am looking forward to all your future posts. xo

    1. Rebecca, I don’t try to speak for others, but I do try to advocate on behalf of all those dealing with metastatic disease today, in the past and who will be in the future. It’s appalling how the Pink Machine has not better educated the public about mbc after all these years of awareness campaigns. I’m glad you are speaking out whenever you can. I’m sorry you know so much about cancer because of your “front row seat”, but I am glad you are educating many. Thank you for reading and sharing. xo

  5. Nancy, this is an excellent post, and you are a tireless and fearless advocate of MBC. I know your book will make a difference in many people’s lives. It’s strange, even when Faun died, I didn’t realize she had metastatic breast cancer. I knew it spread, but I never heard of the term. I believe I learned the term on the blogosphere, which is a great educational source. You’ve educated me so much, my friend. I plan to make some donations toward organizations that focus on donating the money to research only. We all should be concerned about metastatic disease in general. We need a cure.

    1. Beth, Honestly, I cannot remember when I first heard the word metastatic and understood what it meant either. And yes, I ask myself, how can this be? So it’s not surprising at all that you didn’t realize your friend had mbc. I probably first heard it on the blogoshpere too. Thank you for your kind words and for your ongoing support – not just for me and other early stagers, but to the metastatic community as well. You’re right, we should all be concerned about metastatic disease in general.

  6. Nancy, I look forward to reading the book very soon. I’m still reeling from all the recent deaths of friends in our cyber world. Anything we can contribute to awareness or to deepen the coffers of METAvivor or MBCN will help. I think we are all just so heartbroken these days, it helps to be able to channel some of it into some kind of action or advocacy. It’s a long game, but it’s better than feeling nothing but helpless rage. Much love to you. Kathi

    1. Kathi, Many of us are still reeling and the worst part of it is we know the losses will keep coming. I agree, it helps to channel some of our grief, frustration and so on into some sort of action or advocacy – whatever this means to each of us. Read my book when you feel up to it. Much love back. xo

  7. Hi Nancy,
    I read your memoir over the holidays with great interest and commend you on your eloquence and candour. Well done!
    I first learned of metastatic breast cancer when I was 15 years old and my grandmother was dying of it. During the 14 years I was a family doctor, I had several patients in their 30’s and 40’s who were diagnosed and treated for various stages of breast cancer. A few decades later, all but one have died or are dying from metastatic breast cancer – and that one recently suffered a local recurrence. So after undergoing 8 courses of gruelling neoadjuvant chemotherapy for Triple Negative breast cancer only to discover on the surgical pathology of the mastectomy specimen that my tumour instead of being 2 cm was 6 cm and there appeared to be “minimal response” to chemo, I wept in my beloved medical oncologist’s office. At the same time, I was so comforted by his kindness and honesty in saying, “You are right to be realistically fearful of and humbled by this aggressive cancer. After you complete your radiation treatment, try to pick up the pieces of your life the best you can and leave the worries of the “what-ifs” to me.” Great advice, but as you so well know, difficult to follow.
    I was heartbroken on learning of Holley Kitchen’s death yesterday. How timely your posting on MBC was and how educational you, Mandi, Ann, Beth and other bloggers are.
    Thank you all for your invaluable postings and for the time and energy you devote to them and in turn, to us, your readers.

    1. Laine, Thank you so much for the feedback. I’m glad you thought my memoir to be a worthwhile read. I’m sorry about your grandmother. Such an experience certainly changes a person, doesn’t it? And then to be diagnosed yourself… I’m sorry. And yes, sometimes the advice is next to impossible to follow and we all have to muddle through as best we can. We were all heartbroken to learn about Holley’s death. The thing is, every death from mbc is heartbreaking for some family out there. We do need to do better. Thank you for sharing and for your kind, supportive words.

  8. Hi Nancy, thank you for this, your advocacy, your book, your willingness to share so openly about the realities of breast cancer. I think, the reason I love this post so much is because we’ve waited so long for the chance to speak up about these things. It’s been such a long road and finally, the time seems right. You are opening people’s eyes to what’s happening. Since coming back to blogging and really delving back into our community, I see a big change in the bloggers out there and to some extent, the media that writes about breast cancer. The attitude is changing. I’m seeing a lot more anger and determination. Good steps in the right direction and much of that stems from you! Thank you for not giving up the fight. I know the ladies in my life that I’ve lost, thank you, too. xoxo

    1. Stacey, I agree. There does seem to be more anger, more determination, a greater sense of urgency, or something. It’s not like those things haven’t always been there in the blogosphere and even before that, but the voices are becoming stronger and more united. And finally there seems to be movement, albeit still too slow. I think it comes down to the power of social media. So as much as we all complain about it sometimes, this is one case when I think it’s had a big impact. So I don’t take credit at all. But thank you for your kind words. And let me just say again how happy I am to have you back actively blogging. xo

  9. 47 diagnosed with stage 2 breast cancer. 6 mths chemo, surgery, and radiation. Cancer free 7 yrs. did Not
    Understand MBS till July 2014 and doctors tell me opps, it’s back, in your bones, we’ll slow down the progression of the disease but it’s not curable! Wow ! So I am on my fourth type of treatment. I’ve done 3 clinical studies this time and they last about 3-4 months at a pop. A year ago it also showed up on my skin, upper eperdermis.

    Lying in bed at 57 years old with symptoms of nausea, clammy, sweating, and BP
    up when I came across you on Facebook. I’ll have to find your book. Thankfully I gave my faith which gets me through this mess! Thanks for listening

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