I’m not sick, this system is. 

I’m becoming increasingly aware that we humans don’t like the truth unless the truth is butterflies, sunshine, rainbows, baby pandas, etc. This is fact across the board, regardless of the issue. Because we are actually very relational and empathetic creatures, and because this world is so painful for so many, it’s easier for us in this world full of endless distraction to exist in a comfortable state of denial about the sometimes ugly reality of living. We may be aware to some surface degree of the struggles of those in poverty, of racial disparities, of the hardships women face across the globe, -we know these issues exist, and thankfully for us, so do the Kardashians and puppets like Trump to distract us from our discomfort regarding the bitch of living.

My concern is this: how is any real progress going to be made in any aspect of social justice when we insist on anesthetizing over accepting the truth?

I believe the truth is more workable than some fluffed up version of reality. But we must accept truth in order to really move forward.

As you know from my previous post, the airing of the news story was a bit of a disappointment. The story was “cute”, but failed to express the unique challenges young women with breast cancer face. We are dealing with a different disease. The research indicates that breast cancer in women under 40 is often more aggressive, and our survival statistics are much worse than women over 40. We are more likely to be diagnosed at a later stage, and the treatments for us tend to be more aggressive, aka, more harmful.

So, Mackenzie and I decided to write to the reporter to express our feelings about the story:

Hi (keeping the name anonymous),

Unfortunately, I was still “Lisa” in the second airing. I’m a little disappointed in that.

While it was fun to see ourselves on tv in a nice portrayal of our friendship, Mackenzie and I are also slightly disappointed with the fact that the story didn’t emphasize our message to young women-self awareness, knowing your own body, self care, health and wellness-everything we have both come to stand for through this experience. We were truly hoping this was going to highlight the unique complexities of dealing with this disease as a young person. Instead, it seemed to depict a very “cutesy ” version of some very real things we were trying to say, and I’m afraid if we had known that was going to be the case, we would not have participated in the interview. We were hoping this would provide the opportunity to inspire young women to better care for themselves, but instead, this was a dolled-up version of something that breast cancer isn’t. Breast cancer is not pleasant, or light hearted, or happy. Yes, the bond that Mackenzie and I have is very special, and we are tremendously grateful for each other’s presence, and we are happy that people were able to see the power of friendship in tough times. But breast cancer is not cute, or fluffy, or lighthearted. It is a devastating disease of forced confrontation with mortality, shattered body image due to invasive surgery, awful and debilitating side effects from medical intervention, and overwhelming uncertainty for what the future may bring-regardless of the aggressiveness of the treatment you receive. And when you are facing it in your 20’s, when you are just really beginning your life, the disfigurement from surgery, the implications on fertility from chemotherapy and hormone therapy, and the psychological toll it takes on your entire existence feels unbearable. The closing remark discussing mammography was frustrating to Mackenzie and I as well- it seemed to imply that our odds as young people would somehow be better if we had mammograms earlier-when we both clearly voiced that even with cancer being seen on other screenings, mammograms didn’t detect it for either of us. There was just a lot of disregard to what we said and some inaccuracies too, for example; Mackenzie did not discover her own lump, her husband did. I realize that you aren’t responsible for the way the story was presented, but Mackenzie and I both agreed upon the importance of expressing our overall feeling. I think it’s important to emphasize that the Breast Cancer we see in the media, especially during breast cancer awareness month is not an entirely accurate picture. It’s often watered down, “pinkified”, and inauthentic. I think progress we make on the front lines in ALL aspects of this disease depends on our willingness to get honest about what this disease actually is -and isn’t. 

Amy and Mackenzie 

Writing this felt empowering and necessary. This was the response we received:

Amy and MacKenzie, 

Thank you for your note. I was, to say the least, disheartened to read it.

It was clearly never my intention to misrepresent you or your wishes, or paint breast cancer as something “lighthearted or happy”. I’ve met far too many women to ever consider that, nor do I think that was done.  
The story did initially have a section in which you spoke about issues unique to women in their 20’s and self-care. 

The length was 2:30 at the point and it needed to be 2:00, as our average story runs between 1:20-1:40.

It is an important message and not including it was in no way an effort to minimize it.
The relationship aspect of your story was/is unique to you and for that reason, a story that had never been told . It is also one in which I thought people could relate and find inspiration. 
I also believe featuring two women in their 20’s with breast cancer is, in itself, awareness raising. 
Time is always the enemy in presenting a story and in this case, I requested and did get more time, but it still wasn’t enough. Choosing a focus can also be a subjective process.
Having said that, I have requested and was granted a follow up to your story during our 5:30pm half hour today about the importance of knowing yourself in regard to your personal thoughts. 
In taking to heart your note, I realize this may not suffice, but it is a way of trying to answer your concern and show my sincerity in sharing your story. 
I wish you both the best and admire your courage and strength. 
Her response was kind and compassionate and very much appreciated. This is what they aired after all that:

Forgive the quality of the videos. 

We appreciated her trying to capture more of our message to young women. Unfortunately, the clip she used was one where I was channeling my inner valley girl… oh well. 

But it’s very clear that nobody wants the truth. 
And then yesterday, Mackenzies. doctor called to give her the results from the 28 (twenty-eight) biopsies they performed on her lung masses on Tuesday. Turns out it was breast cancer all along. This has been a fucking exhausting week. Mackenzies attitude never ceases to amaze and inspire me. Please keep her in your thoughts as she figures out how she wants to proceed. 

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