I have begun to despise Pink-tober, because society assumes that by painting everything pink - we can make breast cancer pretty and we can make people think that this disease is full of women who have wonderful stories of hope. While that might be true, it is not always the case. In the last two months, I have seen the other side. I was diagnosed with Stage 4, which is a story with pain, little hope, and no pink ribbons or magazine articles for us.
The Reality of the Pink Ribbon
People have asked me - "How come you do not like the Pink Ribbon?" It is not that I do not like Pink, I actually love the color pink. Ribbons are cool too. Where the Pink Ribbon originated came from a good idea - awareness, which has suddenly become a marketing tool. The ribbon no longer stands for "donate money to research, " but now has become "hey, buy our product we support breast cancer." The meaning of the Pink Ribbon has lost its effectiveness & most organizations either cap how much they donate, barely donate anything or do not donate anything at all. Its shocking and most people do not want to believe it, but it is true.
People buy Pink Ribbons because Pink is pretty, its for a good cause & it gives people some sense of control over something that they feel they cannot do much to help. If you want to help I would suggest donating to organizations that actually help Breast Cancer (Metavivor, Bright Pink, and the Pink Daisy Project are some good ones). Pink Ribbons dress up breast cancer, make it feminine and make seem to be the "most acceptable" type of cancer. No cancer is acceptable. Breast cancer most of all steals us of that femininity and no pink ribbon can replace that.
What really makes me ticked about this ribbon is that it is on products that have ingredients that have been shown to correlate with cancer. It has been spattered on GMO Products, Paraben Filled Beauty Products, and toxins. I think what kills me the most is seeing KFC buckets with the pink ribbon. KFC is far from cancer safe & is probably the worst thing anyone could ever eat next to Spam.
Stage 4 Cancer is NOT Pretty
Many of my Young Survivor Friends have been in magazines this month from Fitness, Self, Vogue, O, and Glamour. These are the first articles I have seen that did not make Breast Cancer pretty or pink (granted my friends are beautiful in these magazines). This articles were my first glimmers of hope that the realities of cancer are getting put out in the media. I am happy magazines are finally putting the awareness out there that women under 40 get cancer. Similar to women under 40, Stage 4 patients are a minority. I just wish that there was a way to get Stage 4 women's voices get heard also. Just like women under 40, Stage 4 women need awareness too.
Deep down I wish a magazine or an Awareness campaign would also look at us women who got cancer "caught early" and then got the blessing of having it recur again. I highly doubt this will ever get advertised as the general public wants to think that CANCER is treatable if caught before stage 4 & that it WON'T come back. Reality is 2% of research goes to Stage 4 Breast Cancer & 30% of the women who were "caught early" have cancer come back despite having standard treatment. There is no reason why cancer comes back. Treatments work for some & not for others. The main problem is that there is no cure & very little awareness of what happens behind that pink ribbon.
I asked women in a Stage 4 group what they wish was included in Breast Cancer Awareness month. I think the general consensus was to make the public aware of what we go through. That Cancer is not pretty, it is not pink, its not always filled with hope, and it is not feminine. These are our realities:
- Cancer related fatigue & physical pain despite looking healthy or OK
- There is no end in treatment, you will always be on treatment
- There is no cure, you have a better chance at death than being cured
- The FEAR of leaving husbands, significant others, family & children behind
- Being single & fearing dating due to having a Chronic, Life Threatening Disease
- Feeling like an outcast in some support groups & that when other survivors find out you are stage 4, YOU ARE THEIR WORST NIGHTMARE
- Dealing with thoughts of death every day
- Protecting loved ones from our impending deaths
- Employment issues, financial, & insurance struggles
- People telling stories about how their friend tried really hard with her battle and beat it cause she's a survivor
- Doctors losing interest because of the attitude that there's nothing they can do
- Loss of fertility & inability to have a family
- Body changes due to surgery & treatments
- Hair loss for the second time (which is traumatizing and might be permanent until the end)
My Reality
I wish I could end this on a good note but I can't do that. In the past I have tried to make light of my reality, but today I want you to become aware. Some people have heard me joke around that my rack will never sag or my body will never distort from having kids. Reality is, I miss my old chest & I wish I could have opted to get implants and not be forced to. Yes, I got fake breasts, but they look nothing like the ones you see on TV. Due to that surgery I have been blessed with permanent lymphadema in my left arm & have had a three year struggle finding clothes that fit.
I also joke about having the freedom of not having children. I wish I had the choice to not have kids, but that was ripped away from me two months ago. I will watch my friends have kids & it pains me that I cannot even chose to be a parent. If I did have a kid, I do not even know how long I will be here to raise it. Reality as a Stage 4 patient, we live each day as it comes, do our best to stay alive, and hope this treatment is our path to NO EVIDENCE OF DISEASE.
If you know me personally and you are reading this, you are probably wondering where this came from. I might seem ok, but reality is I am not all the time. I do a very good job at putting up a front - "I am strong, nothing is wrong and I am doing OK". Most days I do OK, but I have to push myself to that point. I used to be full of boundless energy and positivity, but getting two cancer blows in 3yrs has changed me. I get tired easily. I cannot do too much in one day or my lymphedema will act up. I cannot exercise for longer than 45min or I get lightheaded. I used to workout everyday & getting myself moving 3-4x a week is a struggle. I have a hard time getting out of bed in the morning. I forget where I put things. I get annoyed easily. I get depressed easily. If I do too much in one weekend, my whole week is shot. Have I mentioned that I get hot flashes every 10min or so? The heat is intolerable, I flash or my arm swells. This is not what a normal 29yr old experiences. You can say "Yea me too," but until you walk a day in my shoes, you will never fully understand how hard this is. I just want you to try to understand.
We all wish that the pink ribbon will give us a cure, but the campaign and Pink-tober is falling short of that. The more people mask the reality of cancer with a pretty ribbon or the color Pink, the less inclined people are to give money for a cure. Pink ribbons are the facade - "everything will be ok." Reality is everything is not always ok & we need a cure before more of us die from this disease.