The breast cancer solution

After the Komen Foundation/Planned Parenthood debacle, a lot of thought has been given to where our money really goes when donating. I had often thought of this living in close proximity to one of the country’s most charitable philanthropists and foundations. So, I began to really think how I wish the approach to breast cancer’s solution had the philosophies of The Bill & Melinda Gates Foundation in how it tackles problems such as malaria and education. We have the tools and brains to succeed, now we need innovation and the accountability for those successes. Where are they, why is breast cancer spreading as if a mosquito can carry the disease from breast to breast and beyond? There is too much money being donated which seems to float around organization and fanfare, rather than championing solution. It needs to be attacked at its roots, while getting great minds together to solve this problem, not just treat the disease.

Everyone has been touched by cancer. It seems to be universal, so when choosing to donate money, many of us choose some type of cancer organization along with whatever tugs at our heartstrings. There are several ‘trusted’ organizations out there that do great work, yet most of them (in my brief research) do the same things: treat, educate, prevent, and research, which is mostly based on synthesizing data about prevention. Mostly prevention means exams and early detection. Where is the innovation?

In subscribing to various TEDtalks, I watch many speakers of all backgrounds discuss cancer. I see innovation at TED but then what happens? Where do these innovators go? Scientists at places such as Dana Farber are making some head way and discussing, researching new drugs and treatments but are they looking into prevention at the root of cancers? If so, is it being funded? For example, all of these diet crazes have many books with grand ideas which may hold water yet the research to firmly back them up seems to be lacking. So, should I go raw vegan, eat mushrooms or not eat mushrooms? I wonder if we can we have some solidarity in the solution or should we just try to sell more books….

I saw a great TEDtalk about research and the sharing of ideas: Jay Bradner, Open Source Research  this was from 2011. I often question what has happened with his successes or similar triumphs?

I hear of these innovative drugs that can cure faster, well where are they and why don’t they apply to ME? Why was my Tykerb (which didn’t work and made me feel like death warmed over) about $10,000 a month? Are we so obsessed with the pharmaceutical aspect of cancer that we can’t see beyond the chemotherapy treatment? This is a business after all, why would they want to cure my cancer if it brings in that much money, why would they want to prevent cancer if it brings in that much money? Still, I ask my doctor about these innovations, and we often have great discussions, yet he won’t advise me to follow any of them because of the risks at my stage. Can innovation occur without a risk that may be deadly? Can they tell me why my nothing breast cancer returned with a vengeance less than one year after my mastectomy? And where was my education and prevention within that year? Many thoughts to marvel at…

As for my personal donations and what actions they provided, I wonder what they did for me and my sisters of breast cancer, brothers, uncles, friends of cancer? I would like some accountability and innovation for my $ 500 here, my $ 25 there, and my $ 1 at the check out stand. This year my husband and I were so fed up by donating into nothing but still wanted to give, and although we keep these things private, I must say that we gave our yearly contribution to the bartender at the local pub; her PTSD husband committed suicide and left her with a child to raise on minimum wage. The innovation there was community.

Questions are abundant within this community, though they are more like demands. I see thoughts coming at me like bullets in the forest of hunting season.  We demand action and resolution.  I demand a solution, as it seems cancer will be around a lot longer than those pesky malaria carrying Mosquitos.

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It’s Saturday already?

Every Monday I head to “chemo jail”. Last week was a 5 drug week with an addition of Tykerb today. I am officially dosed. I am not ready for this Monday. Usually by the weekend, I have some semblance of energy and a bit of pep but this week is off the charts with difficulty.
Here is what a Monday brings:

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It is coupled with the most amazing nurses, a beautiful husband, and truly lovely friends visiting. Keeping the calm…..