Wednesday, October 3, 2018

Pinktober


A couple of years ago I had dinner with my friend Alicia and her daughter, Steff. It was October. Steff, a senior in high school, was just finishing her final year of school, but just barely. She had missed months of school while she underwent surgery, chemo and radiation for a brain tumor.

There was a sign on our table that said "October: Breast Cancer Awareness Month! FREE appetizer if you donate to breast cancer awareness!"

Awkward.

We talked about how it's hard for someone struggling with NOT breast cancer to wade through the sea of pink in October. Steff said she felt invisible, that her cancer was somehow less important.

I know some of you can relate.

Let me just say this now. You do matter. You are not invisible.

And I am annoyed by Pinktober.

As a "former" breast cancer survivor, now that I have metastatic disease (cancer that has spread beyond the breast to other tissues), I'm not sure what to call myself now. I'm not technically a survivor (unless they figure out a cure...), but I'm not dead, either. I'm very much alive, doing the best I can on the drugs that are available to me, hoping beyond hope that they come up with new treatments that will keep me alive long enough for someone to find a cure.

Those of us with metastatic disease refer to October as "Pinktober." For us, breast cancer is not something we've "beaten." Some of us have been asked to leave breast-cancer support groups because we scare the other people there (seriously - I'm not making this up). And the statistics about breast cancer are woefully misleading. Only those who were diagnosed initially with stage IV (metastatic) breast cancer are counted as metastatic. (So the number of "successfully treated" patients is artificially inflated.)

What does this mean? I was first diagnosed in 2005 with early-stage breast cancer and I completed treatment, so therefore I am counted as "successfully treated." My breast cancer came back years later (I was diagnosed with metastatic disease in 2013). Only when I die from this disease (and I will, since metastatic breast cancer has a 0% survival rate), will I be counted among the metastatic statistics.

And why is this important? From the Metastatic Breast Cancer Network (MBCN) website:

"According to the Metastatic Breast Cancer Alliance’s Landscape Analysis, which analyzed research grants from the major cancer research-funding agencies around the world, research funding for metastatic breast cancer accounts for only 7% of the total breast cancer research investment. Without an ACCURATE count of the number people currently living with Stage IV breast cancer, that number is unlikely to change."

Each Pinktober, my thoughts turn to the friends I've met because of this disease, and lost to this disease - Carey, Trina, Dani. And I think of friends who are battling cancer - not just breast cancer - Steff, George, Jenny and Scott, Jo, Judy, Sheila and Sheila, Walt. You are NOT invisible. You matter.

People have said to me over the years that they admire my strength and positivity. If I am strong, it's because I had no other choice. If I am positive, it's because for me, that was my only option. Being negative isn't going to help! But choosing to hope... that's something.

If you would like to stitch my "I am strong" sentiment (I made mine into a magnet), you can get the pattern here. You don't have to stitch the ribbon in pink. I've included a small chart with some ribbon colors for other types of cancer.

13 comments:

  1. Thank you for sharing this with us Meg. I know it was a hard post to write but you have encouraged me today to remember to pray for all my friends who are facing serious health issues. I have a dear friend who has multiple myeloma and another who is battling Pancreatic Cancer. Virtual hugs to you today and when I see the Pink everywhere, I will think of you and say a prayer.

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  2. Oh Meg. Thank you for this post. YOU are an inspiration. I like the pattern very much. Thank you. You and many others are in my prayers.

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  3. Meg you do not know me but I am following your journey. You will be in my prayers and I do appreciate your sharing this post with us, as many of us do not know about the things that you have told us. Stay strong and know that there are people pulling for you!

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  4. Meg, God bless you. Stay strong and beat cancer. Hopefully a cure will be found soon.

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  5. Thanks for sharing this pattern as well as your story. I too am a Breast Cancer Survivor. Life will never be the same. I always wonder and worry if it will come back. The doctors give me good odds that I will be okay. So many family members have been stricken with this disease and some have survived while others lost the battle. There are many types of Cancer. I hope someday there will be a cure! Prayers for you!

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  6. I HATE October Meg. I hate being continually reminded about "my" cancer and everyone else ignore. It becomes top of mind which is not what I want at all - I just want to live and enjoy each additional day allocated to me as the gift that it is. I HATE having to be strong and positive and all of it - I am a coward - one of those for whom support groups are painfully wrong - ie why'd they die and I didn't? Anyway, I think everything you wrote is so very true and non-cancer folks have no idea.

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  7. I'm sure this was a hard post to put down into words... so many feelings and emotions are connected with the word cancer. I have lost a few friends to the disease (not just breast cancer) and I still can't think of them without tearing up. I do know that miracles and cures through research are happening every day and I pray that you are the recipient of one of those, dear Meg. Sending you a big caring hug and hoping that you remain strong and know that so many of us are pulling for you. ♥♥♥

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  8. Thank you for this post Meg. I have shared it to my FB page. I know someone living with MBC and I know how hard and frustrating October can be for her. We need to do more to ensure that Stage 4 MBC is cured. Awareness of how little is being devoted to research for Stage 4 is the first step!

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  9. God Bless and Keep You. I've lost three to cancer in less than a year. And I still do not know what to say.

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  10. Thank you for your post and tender words. I have lost family members and friends to various types of cancer, I pray your body continues to fight the disease and you will some day be healthy. Your a talented stitcher, your projects are really cute.

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  11. I just "discovered" your blog. I admire the truth in this post. I know that many who suffer from all forms of cancer do feel a little slighted because of pinktober. Also, the stats and the funds for research, sadly is true for many cancers as well. I do so pray they will find a cure...we have lost so many awesome people, enough is enough! I admire all your lovely designs and thank you for sharing your talent with us. ((hugs))

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  12. Thank you for sharing something so hard. It's such an ugly disease, no matter where it is. Unfortunately I know many people who have fought, are fighting, and sadly lost the battle. And thank your for sharing the pattern, I like how all the ribbon colours are shown.

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  13. You are a blessing in my life Meg. I love your thought process and the way you live your life. Cancer stinks and is so hard in so many ways but you do your very best to live each day to its fullest and you make me proud to be your friend. Love you. RJ

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