Tuesday, November 4, 2014

Pinktober


The pretty pink ribbon
For the first time in my life, I've paid direct attention to October's Breast Cancer Awareness Month. It has taken on a whole new meaning for me now that I actually have breast cancer. You would think this month would be extremely encouraging to women with breast cancer, and I think for many women it is a month that they feel very special and supported. I know my friends and family have made me feel very loved this month. However, since becoming a part of a network of woman dying of the disease - ones that are undergoing the most aggressive treatments possible - women that will suffer for their entire lifetimes until they pass - my eyes have been opened to the dark side of that pretty pink ribbon.

The Awesome

Noah's School

Let's start with the good stuff of this month. Noah's school had a breast cancer awareness day which I thought was nice. It turns out they don't make pink shirts for boys in toddler size, but I hated to send the one kid in the school whose mom actually has cancer without a support shirt! So Brad had the idea of making a shirt. I picked up a $3 shirt from wal-mart and some neon pink puff paint. I looked at the materials thinking "this is not going to end well...there is no way this is going to turn out okay." We debated about writing some catchy phrases on the shirt ("Give to research: help my mom live to see me in Kindergarten", or "Help me find a cure"), but they all sounded just a teensy bit...depressing, at least for the toddler class.  So at midnight the night before we settled on this:

Daily Gifts

Another fun story from the month has to do with my friend Jamie (mentioned before here) who had Stage 3 breast cancer seven years ago at the young age of 25. She has been extremely supportive through this journey and I'm so thankful for God putting her in my life literally hours before and after my diagnosis. God is so cool. 

Every day in October either her or one of her "helpers" drove to my house and dropped off a pink gift wrapped with an uplifting verse. The gifts ranged from pink gum to a sign she had painted to candy to pink ear plugs. It has been a blast looking out my front door each day and finding a treat! I can't believe she has been able to find that many things that are pink! Thank you Jamie for the loving encouragement you are to me daily! <3 
Jamie = Incredible!!

Breast Cancer Funding

Breast cancer is one of the most funded diseases in the US- sweet! Some of you may have seen this infographic floating around:
Donations vs. Death
I remember seeing it earlier this year, before being diagnosed, and thinking it was dumb Americans give so much money to breast cancer when it has a really high survival rate. (You'll see below how that sentiment has changed.)

Many wonderful organizations and leaders have done a terrific job bringing breast cancer out of taboo status into common knowledge and raised a boatload of money over the years. Before being diagnosed, I had definitely heard of breast cancer, the Susan G. Komen organization, mastectomy, about how mammograms were important for detecting breast cancer, and things you could do to increase or lower your risk of getting it (aside: I don't do any of the things that increase your risk and I do all of the things that lower your risk). If I was born a generation ago, I would not have nearly this level of knowledge, and that is due to the tireless work of many women and men to increase breast cancer awareness- for them I am so very grateful!

The Not-so-awesome

Unfortunately, my newly found awareness of this month has not been all positive. There are many women out there that HATE when this month rolls around and want to throw up from even seeing a pink ribbon. I've just established that I personally have felt very loved and encouraged this month, and I appreciate the work organizations like Komen have done to raise awareness and public discourse around the disease.  Still, you can understand some of the reasons why Pink is an ironically depressing color for many women with the disease: 
[If you don't see a video on mobile devices...here's a link to "Pinkwashing for a Cure"]

I've seen a ton of articles come across my facebook feed this month from all my newly formed IBC contacts. These articles have articulated much better than a math-nerd/writing-illiterate like me ever could but I'm going to take a shot at summarizing the high (or rather low) points for you:
  • Awareness vs. Research - How many people do you know that have never heard of breast cancer? A large percentage of breast cancer donations go to "awareness" and not to research. The numbers I've heard are somewhere in the range of 11-20% of funds raised go to research. In spite of Susan G. Komen's tagline - "For the Cure" - only ~16% goes to research that would lead to finding a cure. Bummer, right? 
  • Research on Rare - So you take the fraction of money going to breast cancer research and then look at how much is being spent on "rare" cancers like mine - triple negative and inflammatory - and that fraction goes down to pennies on the dollar. 
    • I've been so incredibly disappointed to learn that after getting the "most funded disease in America" that treatments and survival rates for my type of BC have not statistically changed in the last 30 years due to lack of research dollars. In fact, I've learned that IBC does not have an ICD-9 code, the official system of assigning codes to diagnoses and procedures associated with hospital utilization in the United States. You know what that means? That we can't even track how many women actually have IBC. Try to get funding when you can't talk about any hard numbers, only rough estimates. 
    • I was talking with my post-doc friend at MDA and she said her colleagues this year had excellent research projects for triple negative cancer, and every one of them got denied funding due to it being "too rare". If you look at this slide she sent me (below), it actually is the 5th largest type of cancer killing women in the US. So even if it is rare from a standpoint of people getting it, it isn't so rare from a people-dying-from-it perspective. Same with IBC: it makes up 2-5% of breast cancer cases but makes up 10% of the deaths (a disproportionately higher amount). 
  • Profiting off the Pink - The documentary Pink Ribbon, Inc. describes how corporations are leveraging the emotional connection made with the consumer to increase sales via the lovely pink ribbon. You can imagine someone dying of metastatic breast cancer not loving the idea of someone profiting off their disease, right? 
    • Think Before You Pink tells readers to follow the pink ribbon to the funding. Make sure the product or company clearly says where the money is going (or that money is actually going somewhere), how much of the cost is going to the non-profit, and make sure there isn't a cap on the donation amount. If there is a cap then that probably means your one more purchase won't actually increase how much they give. 
  • Metastatic - When was the last time you saw someone in an interview, promotion, marketing campaign that had Stage 4 breast cancer? Someone for which "surviving" and "finding a cure" are now out of the question. Often times the awareness campaigns celebrate the survivors and abandon the women actually dying of breast cancer. Dying of breast cancer is not pretty. Treatments and side effects are not pretty. The frankenboobs I will soon have will not be lovely and feminine. I've taken marketing classes, so I get why they decide to use happy, peppy survivors and not depressed, dying women; but it still doesn't seem like the ideal way of treating those struggling to stay alive another month, week, or day for their families. :-(  
    • A recent example here is the Joan Lunden article this month on the cover of People Magazine.  On the adorable side, Noah looks at this magazine and says "Mama!".  However, the tagline of the article - "I will survive this" - is frustrating for me.  Of COURSE you're going to survive this - you have one of the kinds with a 90% survival rate! It would be a lot more 'courageous' for PEOPLE to make a metastatic woman (like this one or this one or this one) their cover instead of the photogenic Lunden.
    Joan Lunden
  • Miscellaneous Grievances - There are a handful of other crimes that I find more minor but have been pointed out to me over the last month, they include:
    • So called "pink products" that actually include chemical carcinogens that have been proven to cause breast cancer. A lot of these are lotions, makeups, perfumes but my favorite has to be the pink drill bits used for mining:
"Stop fracking with our health"
    • I had always thought of the "save the ta-tas" shirts as being kind of cute and a way to be relevant to the younger culture. But if you think about it for a second, I'm about to lose my "ta-tas" to hopefully save my life. Something seems backwards about saying save the ta-tas.
    Save the tatas or save the woman?
    • Sexualizing breast cancer has been a fun one to read about. Check out Nascar's shirt this year to "check your headlights" or the Hooter's campaign or the "Save Second Base" shirts. Part of me likes the good natured humor and knows that these people probably started with their hearts in the right place, wanting to raise money for BC; however, you can see how for someone feeling not the least bit sexy sans hair and boobs, this does not go over well.
Second base
Hooters
    Nascar
Whew! I think that pretty much covers it. I definitely don't like to be all complainy-complainy but I figured one not-so-short educational post wouldn't hurt. 

What should you do instead?
A few people have asked where they should donate funds if they want to help out. I personally am a fan of the IBC Network. 100% of their money goes to IBC research. I've met the founder and driving force behind the organization, Terry Arnold, a fellow triple negative IBCer. She has been able to raise over $330K in the first three years of the organization's existence. She works tireless hours as a volunteer so every penny can actually go to "finding a cure". 


I choose to still see the positive-support-side of the pink ribbon. I know my friends and family that buy pink products are doing it because they love me, support me, and want to see me get well. I never want to get to the point where the ribbon makes me want to "throw up" or I "can't wait for October to be over," but I do want to be more informed and make sure those around me realize the pink ribbon is not as straightforward as it seems.

15 comments:

  1. This is so informative, it makes me really sad that nobody else has commented. I realize that you can't (probably) see my comment now but thank you for posting this. My husband is a cancer researcher MD/MS/MS at what *we* would jokingly argue with you is the #1 for cancer in the US and world, Dana-Farber (I've loved your Boston posts). Maybe because his career is the "third spouse" in our relationship, I appreciate what you've done here by making your experience accessible to others. I have read him many parts of many of your posts, since he also continues to treat patients (albeit leukemics and lymphoma sufferers). You are absolutely a fantastic writer in addition to your mathematical skills. I'm so impressed with you, I feel like I love you just from reading your blog even though we're sooooo different (I am definitely not as Type A as you, although I was a lawyer, and I'm a SAHM and love it - I think it's amazing that women like you can do both and love that, too). I realize that I don't actually know you and you'll never see this, but I still wanted to thank you for your blog.

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  2. October doesnt really have any pink ribbon significance to me but we (Terry's family, I am married to her brother) are all very proud of Terry's IBC charity and I wear my IBC tshirt to the gym and to different activities around town... I live in Milwaukee. I try to donate when I have money and try to stay informed in case some one asks me about the tshirt. I have some IBC bracelets I hand out sometimes when it is appropriate. You never know.. someone could really benefit in some way. Yeah, ok Komen is powerful but funding research is amazing. Just my opinion.. Allison

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  3. So very informative, I pray that you keep the faith, continue the fight and just know God sees you all and know your struggles and He never fails. I believe when it's all said and done, everyone including these HUGE companies will Reap what they have Sown, Amen.

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  4. I had IBC, stage 4 in 1993! During this time, I have seen many of my friends and my own mother die from this cancer! It is just by God's grace that I lived through this nightmare. No, there is not enough research for this type of cancer. It is still hard to be diagnosed with it. I know, in 1993, I had seen so many doctors and some would not touch me! Told me they would not touch me with a ten foot pole! I went to Emory, in Atlanta, GA, which was two hours from home! I want to thank Terry for all the hard work that she has done for a cancer that is more known about then years ago! One day, may we have nothing but survivors! But those whom we have lost, let us never forget what they went through! Praying for those that have this awful cancer and the one's that are working to find a cure.

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  5. Jennifer Smith from TennesseeMarch 4, 2016 at 12:39 PM

    Thank you for being truthful and honest. Thank you for being brave during the most difficult battle you will ever face! IBC needs a voice! Learning that IBC even exists is so sad, because no doctor, radiologist, nurse, or medical professional says to you during yearly mammograms,
    "By the way, you know a mammogram cannot detect all breast cancer. Do you also know that IBC can be so subtle with it's deadly attack that the skin symptoms a person experiences is not the typical red flag! Check your skin, look for a bruise, check for "heavy" feeling in one breast or both, and most shocking of all, you will not have a lump!" How sad that every woman is not made aware of IBC at their very first gynecological appointment in their teenage years! Yes, IBC took my Mother's life in 2008 and it is tragic that I had never heard of IBC until her diagnosis. Me, an educated, health conscience, American female! I was also told (along with my three baby sisters) that IBC is not inherited. Well...after reading a previous comment to your post, obviously that is not the case. IBC is viscous and deadly and there are SO FEW survivors that those survivors have no voice. I am praying specifically for your healing and I ask God to help me be a voice!

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  6. شركة نقل اثاث بالدمام التفاؤل شركة نقل اثاث بالخبر كما انها افضل شركة نقل اثاث بالجبيل نقل عفش واثاث بالجبيل والخبر والقطيف والدمام
    شركة نقل اثاث بالدمام
    شركة نقل اثاث بالجبيل
    شركة نقل اثاث بالقطيف

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  7. اهم شركات كشف تسربات المياه بالدمام كذلك معرض اهم شركة مكافحة حشرات بالدمام والخبر والجبيل والخبر والاحساء والقطيف كذكل شركة تنظيف خزانات بجدة وتنظيف بجدة ومكافحة الحشرات بالخبر وكشف تسربات المياه بالجبيل والقطيف والخبر والدمام
    شركة تنظيف خزانات بجدة
    شركة مكافحة حشرات بالدمام
    شركة كشف تسربات المياه بالدمام

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  8. اهم شركات نقل العفش والاثاث بالدمام والخبر والجبيل اولقطيف والاحساء والرياض وجدة ومكة المدينة المنورة والخرج والطائف وخميس مشيط وبجدة افضل شركة نقل عفش بجدة نعرضها مجموعة الفا لنقل العفش بمكة والخرج والقصيم والطائف وتبوك وخميس مشيط ونجران وجيزان وبريدة والمدينة المنورة وينبع افضل شركات نقل الاثاث بالجبيل والطائف وخميس مشيط وبريدة وعنيزو وابها ونجران المدينة وينبع تبوك والقصيم الخرج حفر الباطن والظهران
    شركة نقل عفش بالرياض
    شركة نقل عفش بالطائف
    شركة نقل عفش بالدمام
    شركة نقل عفش بجدة
    شركة نقل عفش بمكة
    شركة نقل عفش بالمدينة المنورة
    شركة نقل عفش بينبع
    شركة نقل عفش بالخرج
    شركة نقل عفش بالقصيم
    شركة نقل عفش بخميس مشيط
    شركة نقل عفش بتبوك
    شركة نقل عفش بابها
    شركة نقل عفش ببريدة
    شركة نقل عفش بنجران
    شركة نقل عفش بحائل
    شركة نقل عفش بالظهران
    شركة نقل عفش واثاث
    شركة نقل عفش

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  9. افضل شركة نقل عفش بالدمام

    شركة المنزل افضل شركة نقل عفش بالدمام فهي تعتمد علي افضل الفنيين و النجاريين لفك و تركيب العفش و افضل العمالة المدربة علي نقله و تغليفه بافضل الطرق لعدم حدوث اي اضرار
    شركة المنزل شركة نقل اثاث بالدمام مع افضل السيارات المخصصة للنقل و الشحن مع امهر السائقين
    نقل اثاث بالدمام


    http://elmnzel.com/moving-furniture-dammam/

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  10. Cured of TNBC!
    I want to take this time out as a cancer survivor to encourage women out there still suffering from this with my story on how i got a cure. The sad news about it is that i was diagnosed on my 36th birthday in 2008 and with stage 3 TNBC which after i made research was a very aggressive form of cancer at that point i decided and told myself i was going to die and that the end has finally come. All my life i never thought of having breast cancer because i was very active and i worked out at the gym several times every week and my diet was okay. In my search for a cure after 6 years of diagnosis and even after chemo which i did twice spending thousands of dollars but to no avail, until a church member told me all about Dr Aleta a herbal doctor that specializes in treating TNBC, who could help me with a permanent cure, i doubted this at first but i later gave it a try following her methods and instructions. It took 3 months and after it all i felt normal but still went for diagnosis and i was clean today i am proud to say i am a cancer survivor no nodes and i am totally free the new diagnosis confirmed it. Do not die in silence or ignorance because of breast cancer just simply reach her on aletedwin@gmail.com and also for any related cancer illness don't be shy just speak to her today.

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  11. My husband is a medical oncology researcher; his 13 years of medical training, research, and practice include Wash U, Harvard, and now Dana-Farber Cancer Institute, widely regarded as one of the top 3 oncology institutes in the world. I'm posting here to caution those who would try experimental methods; that's how Steve Jobs died - the (rare) type of pancreatic cancer he had had a 90% cure rate when he was first diagnosed, but he chose to forego conventional surgery, chemo, and radiation in favor of non-traditional treatments. Those treatments did nothing to stop the spread of his cancer and by the time he realized he'd been fooled it was too late. I personally do not understand how these alternative medicine practitioners can live with themselves, knowing that they are at *best* taking money from people who probably need it for medical bills or to pass on to survivors and at *worst* they are literally killing people.

    Don't forget that real medicine and alternative medicine are *both* industries; both of them have a financial stake in what treatments people choose. The difference is that real medicine is regulated by the government, and its practitioners are held to professional standards and can be sued and even thrown in jail for giving faulty medical advice. No such regulation exists for alternative practitioners, other than the occasional criminal action in the most egregious cases; to bring that kind of action you usually have to be able to prove that the patient would have lived, which is almost always impossible.

    People reading this thread should not be fooled. Here's an article by an oncologist that discusses some of the tragic results of experimenting with alternative medicine when you have cancer:

    https://www.theguardian.com/commentisfree/2015/mar/03/what-do-doctors-say-to-alternative-therapists-when-a-patient-dies-nothing-we-never-talk

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