Pink Rage

So you go through the tests, you have your yearly checkup, you find out if you have a family history and may start testing early. Everything checks out, you live in your safe little world knowing all the test say you are clear.
Then wait, one day in a shower, you find a painful lump that you know wasn't there yesterday, didn't show up on any tests, or other exams and has suddenly blossomed into an egg shaped painful addition to your breast.
Don't worry "they" tell you, probably a cyst, probably just dense breast tissue but ummm maybe an ultrasound, a couple of biopsies and an appointment with a surgeon and oncologist might be in order. First though, CT scans, Xrays, bone scans, heart scans - lets "see" what is going on.
Funnily enough I was just post radical mastectomy for "nothing" in October, Breast Awareness Month. I have never seen so much pink in my life, and friends and family being supportive contributed to this pink propoganda in more than one way. Don't get me wrong - I am grateful.
But there weren't any pink ribbons when I was diagnosed with a Stage 3 aggressive breast cancer that had spread to the lymph nodes.I began to realize that people triviliaze breast cancer, now that there is a ribbon. The ribbon says, yeah I am a survivor, or I know someone who is/was, or I contribute to the research and early detection campaign. Now What.
The research is out there, they change update and do trials frequently. If it weren't for the online Community Knowledge Base Breast Cancer Org. I would still be drowning in confusion, mix up and lack of knowledge.
The gals (my Breast Cancer Sisters) have all been there done that. Although it is a USA based organization, there are a lot of Canadian gals on that board looking or information, research, individual research and understanding but a lot are looking for emotional, and psychological support from home. The topics on the forums range from Just Diagnosed, to Circling the Wagons as another Angel leaves the forum to watch over the group.
The research is not THERE. Although things have improved in treatments, surgery, chemotherapy and radiation are still barbaric practices that women with breast cancer have no choice but to use.
As I stated it is an American group, and as I discuss later stage cancer with these ladies, and one of our "soldiers" has just recently passed away after a huge struggle of doing all the "right" things - it is determined that STILL 40,000 women each year, die of breast cancer. Where is the PINK in that? These gals (mostly end stage) are talking about having a "die in" in a political arena where it can demonstrate that Pink is not a cure, Pink is not the "Pretty" disease. Pink is still allowing many many women a year to die, many without treatment, many who have run out of treatment and even more who did have early detection and STILL are dying from the disease.
There is all kinds of facts and figures also on the BreastCancerOrg site. Thank heavens for this place.
All of the ladies on this discussion board have been there, done that and know how we ALL feel at certain points in the process. They flock to "newbies" to give support and encouragement. They help decipher those scary pathology reports. They virtualy hold your hand, while you go through scanic and wait for test results to know if you will live or die, or have treatment.
Statistics SUCK and they will be the first ones to tell you that YOU are not a statistic, and that you can beat the odds. They are more uptodate on the newest tests and treatments than even the physicians. You have to be your own advocate. What Doctor in his right mind says - "Oh its just a little lump, lets watch it" I don't THINK SO.
I Have to admit, once the lump was found I went through testing, diagnosis and testing pretty quickly comparatively speaking for the Canadian sector but even so - it took 5 weeks of waiting and testing to be told YES you have very aggressive cancer.
SO I turned to the pink stuff - information, hope, success, RIGHT? Nothing out there much that suggests anything of any help. Just gives you a flag to say, HEY I am a survivor. But am I?
I am a triple negative cancer gal. Sounds good right? WRONG - there are no follow up hormonal treatments afer chemo and radiation. It is just a waiting game to see if they find a new growth, recurrence and maybe it can spread to the bones in the meantime. So far, I have no spread past the lymph nodes, but have met women online with smaller, less invasive, less aggressive breast cancers that have already spread to liver, lung, bones and they didnt even have a lump that was found either by BSE, Mammogram or U/S.
SO I am mad, pink makes me see red. Even those with early detection are dying after grueling, horrible treatment regimes that take out your heart and soul. Of course there are those that live disease free for many years but it is always there.. the What If?
And although pretty, the pink campaign does not help real women get through the process. Suddenly I cant' work - ooops, who will pay my mortgage? who will pay the bills? No one chooses this disease, No one chooses to suddenly be laid up with no income and a household to manage. Where are those fundings, where is that assistance, who can drive me to treatment, how can I pay for the meds. How can I get through being maimed through surgery (I wanted it out of there, no question cut it off) But there is the fallout. The disease doesn't stop after early detection.
I am not the only woman that feels alone, even though there are support groups, family, friends but it is a very lonely process. I have to look in the mirror at my scar, at my bald head, at my growing steroid physical changes by myself.
Yeah, I can phone someone but its not the same is it? Where is that pink campaign that lets me go somewhere when I am too afraid to face another day.
Courage? Hell yeah. Blind Courage too. My fate is in the hands of medical professsionals.
Perhaps I havent' tapped into all the resources, I know that I may have to sell my house, move, get some government assistance to survive. WOW - worked nearly 35 years to be destitute and sick. Luck of the draw? Playing the cards dealt. No planning for my future could have seen this one coming.
PINK?????? well forgive my cyniscm. This is the real world. Pink doesn't put groceries on the table to feed our children. Pink doesn't provide me with any basic needs. Pink provides research for drugs and treatments that may only finally meet approval by the time I am long gone. Women are still dying by the thousands but that part is not talked about so much...

The first buzz/shave after first chemo treatment.I think I was still feeling a bit positive then, new journey, new challenges.
I was not sad to lose my hair, I would like my eyelashes back now though!