I Wish I Had Been Aware Before I Was Diagnosed

Before I was diagnosed with breast cancer, I was aware that Breast Cancer Awareness Month was October. I was aware that Breast Cancer Awareness = Pink.

As a woman, I was aware it seemed pretty neat to see things like the Point State Park fountain (Pittsburgh, PA) flowing pink, and buildings awash with pink lighting. I liked the pink T-Shirts attached with events, and even went to a few events, got the shirt, and thought I was helping the cause somehow. I relished the "girl stuff". If I saw a "Support Breast Cancer Awareness" donation can, odds are I dropped some money in it, assuming I was doing my part and helping the cause without having any idea where my money was going.

I was aware that most sports teams held "pink events" where players and fans wore pink. I attended and participated in events thinking that somehow wearing a pink shirt to a sporting event was going to help cure breast cancer. I was not aware that awareness was only the first step, and that it takes more than awareness to find a cure for breast cancer. I'm neither anti-awareness, nor anti-fun ..... I just want to build on the month of awareness to move forward toward a cure for always...and for all cancers.

I was aware that it was important to catch breast cancer early. I assumed that people who died of breast cancer had not seen their doctor, performed self exams, or had mammograms. I was not aware that those diagnosed with breast cancer died even when the cancer was caught early.

I was aware events and slogans like "Save Second Base" and "Save the TaTa's" were popular and seemed to be for a good cause. Such games were all in good fun in the name of awareness, right? I assumed that saving breasts was the goal. I assumed if the breasts were saved, surely the lives were saved too. I understand sometimes it takes "catchy phrases" to get attention, but is there another cancer where we speak primarily of saving a body part as opposed to saving a life?

I was aware that mastectomies were often performed in response to breast cancer. I perceived a mastectomy was a last-ditch effort to eradicate breast cancer by removing the breast. I assumed that at "worst case", the breast was removed, and the breast cancer must then be gone as well.

Not many people have a literally lifelong friend. I have been blessed to have such a friend as our parents were friends when we were born. 18 years ago,my lifelong friend was diagnosed with breast cancer. She was young, and looked pretty healthy and happy to me considering the treatment. I recall remarking after she reached the 5-year mark after her first diagnosis how glad I was that everything was back to normal now and the scare was "over". She didn't correct me, but I do recall she was hesitant in her response.

My friend was my biggest supporter when I was diagnosed, and was the first person I told when I "knew" before I was officially diagnosed. Our stories are very similar, though more than a decade removed. I watched as my friend went through recurrence after recurrence. She always seemed to come through and go into remission once again. I admired her strength and faith. In her current progression, there will be no more remission, and I struggle to help her and her family as they prepare for what is to come. She is at peace. I am heart broken. My thoughts of years ago that it was "over" when she reached the 5-year mark haunt me,. She is not the first of my dear friends to reach the end of their options, but she is the dearest of my friends to reach this point.

I thought I was aware of what breast cancer meant, but clearly I was not. I thought I was contributing to making a difference in finding a cure and "preventing" breast cancer. Clearly, I was not. My hope is that moving forward, we can build off of the original "awareness" and work together to make a difference in the lives of those diagnosed with breast (and other) cancer. To truly find a cure requires research. Awareness is only the first step. We need to keep moving forward. We cannot be content with the status quo. I want to live. I want my friends to live. Please help me.

Awareness

Awareness...I have a lot of mixed feelings about October and breast cancer awareness.

I'm very appreciative for how far we have come in the past decades since women were embarrassed to be diagnosed with breast cancer and spoke of it only in hushed tones with a few trusted people. As awareness grew, somehow breast cancer became the fun and happy kind of cancer, surrounded by a sea of everything pretty, vibrant and pink. Pink shirts, mugs and towels; pink mixed drinks and party wigs; even pink cars, drilling bits, and tools; Go Bra-less Day (every day for me now) and Save Second Base and Save the Ta Ta's Events (I'd prefer to save my life). Entire store displays became devoted to pink and proclaimed "buy this to support breast cancer awareness". Some displays even read "Support Breast Cancer"...hmmm, I'd rather eliminate it than support it personally! Sure, many of these items do indeed to some degree contribute to worthy causes. Many, however, made no claim to donating anything anywhere or actually doing anything other than selling pink stuff.

I distinctly recall someone telling me after I was diagnosed that it was a really good time to be diagnosed with breast cancer with all of the awareness and activities now. I didn't think it was a good time at all to be diagnosed with breast cancer. I wasn't sure why anyone would think any time would be a good time to be diagnosed with any cancer.

As months of chemo passed and October rolled around, I realized some people had come to resent those with breast cancer because it was the "fun one" that got all of the attention, which wasn't "fair" to the other cancers. I wasn't having much fun, and I began to question the purpose of awareness. 

Some of my cancer buddies died. That wasn't fun. I'm already aware...I want a cure, I thought. It seemed ironic that so many resented breast cancer for having all the "fun", yet while many with breast cancer do enjoy having some fun, most would prefer a cure over the distraction of all the "fun". A cure requires research. A cure for ALL cancers requires research. That is not to say there can't be fun, but we can't lose sight of the way to a cure.

Stop all of this awareness...I want a cure, I thought. Time went on. I completed 16 rounds of dose-dense chemo, 33 rounds of radiation, and lost track of how many surgeries somewhere after 15. It seemed like every complication or strange side effect was finding me. More friends died. I still have mobility issues and struggle with focus and memory at times. Genomic testing was conducted this summer to help determine whether I should continue treatment or cease when I reach 5 years. The expected test results of my specific tumors were to be low risk of recurrence and either high benefit of continued treatment or low benefit of continued treatment. I was told there was a chance the results could indicate a high risk of recurrence with a high benefit of continued treatment. Nobody told the tumors that was the plan, and the doc hadn't mentioned other possible results. My results came back predicting high risk of recurrence and low benefit of continued treatment....I sure wish I'd have been aware of that possibility. Why don't people understand what breast cancer is really like? Why didn't someone tell me what it would be like?

You know, maybe we really do need awareness. A different kind of awareness. Awareness that people (men and women) get breast cancer even if they live a healthy life, have no family history, do self exams, and get mammograms. Awareness that people die from breast cancer even when diagnosed at an early stage. Awareness that there is no cure for breast cancer. Awareness that it isn't about saving breasts, it is about saving LIVES! Awareness that while support, education, and quality of life are important, research will provide a cure.

Awareness for the diagnosed that while there is support and you can have fun, breast cancer is neither cute nor fun. Awareness that there are options and choices, and that it is OK to ask questions. Awareness that you don't have to wear a wig or get new makeup so you don't make other people uncomfortable. Awareness that reconstruction is not restoration. Awareness that everyone will have advice for you, whether you want it or not. Awareness that at times you will feel you are under a microscope in October.

Awareness that a new normal will come...someday I think! But that the old normal is gone. Awareness that you will meet new friends (and lose touch with others) and learn new things. Awareness that you are stronger than you realize, but that you do not always have to be strong. Awareness that support organizations do play an important role, even if they do not work toward a cure.

Awareness that everyone's journey is unique and that there is no right way to "do" breast cancer...just your way.

Yeah, I guess maybe we do need awareness after all.