Awareness is Not a Cure: Why October stinks for people with breast cancer

BreastCancerAwarenessRibbon-1Okay, I might run the risk of upsetting some folks but I have a few things to say and I write better than I talk sometimes. Here it is: I am not sure if I like Breast Cancer Awareness Month.

I did not like it last year either, but I didn’t have the guts to say anything because I was in the midst of people showering me with meals and condolences and it is rude to scream, “I would rather not be in the position to need this support!” when so many are being so kind. I did share it with my physical therapist at Cancer Rehab…who laughed and said, “No one, who has ever had breast cancer, does.” She would know because, she pretty much knew everything, something I was so blessed by, for the 7 or 8 months that we were in each other’s lives. I think back on this beautiful woman who literally massaged my chest (yep, just what it sounds like) for months so that I could have reconstructive surgery without the football-skin scar tissue that had developed post-mastectomy. We would chatter along about my kids, her boyfriend, and all things associated with getting my life back, while she professionally revived my traumatized body. When I think about Alayna, I want to cry from this place of down-in-my-soul-gratitude for people that do jobs that are so weird but so profoundly necessary for healing. She was so interested that I am a mental health therapist. She told me that she had thought about being a therapist like me….uh, ya, you are sweet girl, you are.

Beyond the wearing of the color of pink, which not many women past the age of 5 can pull off, there are some other issues I have with dedicating a month to bringing awareness of breast cancer to the population.  My first and foremost concern is that “awareness” is not research, tangible support or a cure to those that are affected most. That aside, it puts those who are in the midst of the struggle in a position to be acknowledged for something they wish they never had to endure. At a year out, I am trying desperately to not be identified by my cancer. I want to be Sonia…not Sonia-the-woman-who-had-breast-cancer. My daughters want to be themselves, not the girl-whose-mom-had-breast-cancer. We don’t want to stand up at athletic events or be singled out, especially when we are on the upswing. In fact, we have experienced  PTSD symptoms this October as everywhere we turn we are reminded of the hell we have been through and are still enduring. My heart bleeds for the woman who might be present at these events, facing treatment for metastatic breast cancer, who might be so overcome with fear that a treatment won’t be found in time for her to see a long life.  She might be gripped by the reality that we are all “aware” but there still is not a cure if this thing comes back.  And for many, they may look “all better” but their daily battle with side effects from their medication, pain at their surgery sights, lymphodema, and the uncertainty of when they could face a more difficult bout, keeps them from being able to feel normal in any way.

Do not hear me wrong. I think that the idea of promoting breast cancer awareness started as a very good one. It is always a good thing when humans band together to make the world a better place. But I think we are aware. Breast Cancer. Huge problem. Gotta do something fast because 1/8 of our female population gets it and the statistics are on the rise. We really need to move from awareness to something bigger. The awareness project is ready to do more than make us aware that this is a problem. Unfortunately, there are many aspects of this cancer that many are not aware of, such as complications that can arise in treatment and insurance coverage that is confusing and does not cover Alayna’s profoundly important service. Or how about the awareness that mammograms are actually proving to be ineffective for many women. Few are willing to address the large issue that after all the awareness, we are still treating cancer primarily with cancer causing agents and we don’t know why we can’t get those statistics to plummet faster. I have noticed that my friends who have actually had the disease, have posted less about awareness of breast cancer and more about the awareness that when you give to big name organizations, make sure you know what you are buying into. You might be paying more to promote awareness than research, which again…

12088419_1057407744278255_2695774520610568275_nIt is like the couple that comes for counseling because they are aware that their marriage may not last. If they pay my fee, tell their story and all I have to say is that I am now aware and I will think about them often, I really have not done much for them. I need to offer solutions, methods that come from research and options, in case the one method doesn’t address the unique problem they have.  I do a disservice to them if I show interest and act as if their problem is real, but never follow up with something that offers real hope to them specifically.

My husband is not a fan of the “Kick Cancer’s Butt” theme that has arisen like a sporting goods motto. As if my friend Shelly, with Stage 4 metastatic cancer who has endured numerous surgeries, the removal of major body parts and traveled all around the country to endure rounds and rounds of chemo and radiation will win if she only keeps fighting. She is fighting. She has been fighting. She needs that money that is being collected to be dedicated to research specific to recurring cancers and not to simply bring awareness. She is desperate to find a clinical trial right now because she has tried it all. Where are those big organizations? They are creating more awareness, than cure.

Cancer may not be your issue. You may have a child with diabetes. You may be a victim of domestic abuse. Your parent may be struggling with Alzheimer’s. We can’t all take on every issue that crosses our path. But we can authentically engage when we can and when we believe that our contribution will actually make a difference. We can be feet on the ground, driving a friend to an appointment, taking a meal or allowing them to have a good cry. We can even say, “I am aware that __________________ is a horrible, awful, no good thing and I will sit with you as you go through it.” Now that is something I will stand up for.

Sonia
[email protected]
@soniaknelson

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