My lovely friend Jodi has persevered and come out on top just as she should. Seems ridiculous that the Parks Dept. would even worry about spending the energy and time on such a non-issue (in my eyes). It DOES hurt to wear tight clothing up there. It took me three months to find a decent bathing suit for Hawaii. I can’t imagine trying to swim laps in a confining and conventional bathing suit top while trying to regain my body. Good for you my dear friend. Strength and love and determination.
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.
From the early stages of my diagnosis, pregnancy, and life craziness, I have been so utterly mindful of the amazing people in my life. However, the last seven months have been even more astounding to me. The capacity of friends, family, strangers even, to step up and simply be beautiful, has been breathtaking. (There have been a few weirdos, but really the energy put towards them is useless), I will spare that description and focus on the lovelies.
Friendship: I’ll start here and write a different post on family…
To name them all here would take pages of descriptions, but I want to honor and write about their beauty so maybe I will, within a general scope, though you all know who you are! Let me see where this takes me, as it has been difficult to put into words how truly blessed I am with love, positivity, general assistance, worry, laughter, wit, and those that carry the anger and sorrow for me. It’s a burden that I can’t bare and my friends take it on, and disguise it, and then completely astound me with their love. I need more words to express the love I feel when my friends cradle me….even when I’m cranky and weary, or can’t focus on what the hell they say…they keep it real and let me be. That is a gift.
A beginning description of what my champions accomplish is diffiult to gather. I have had friends fly in from the east coast to assist with childcare while my hubby travels for work, no questions asked, if I needed help…they arrived. Along with the help, it is so heartwarming to see my closest girlfriends bond with my son, share their love, time, energy to keep me grounded. Locally, my hubby’s dear friend from high school and my lovely girlfriend helps one day a week with so much love and so much tenderness and such beautiful mothering skills; she is truly a woman to learn from. My friends and our neighbors have rallied together to devise their availability schedule and consistently check in to ask of our needs, packages arrive at the door, and help with a moments notice is never questioned when things get shuffled and shaky. Sometimes, we arrive home to a gardening crew taking care of our yard, with blossoming flowers and fresh farm eggs on the doorstep. The bonds I have formed here have exploded. My close girlfriends have always been true champions, but lately I see it so deeply. In the beginning, it was difficult to admit how hard it is for me to care for my son alone, but these friends have made it seamless. It truly takes a village, and I have one.
Afar, I receive text messages, notes, gifts, love, and even a stopover visit from a girlfriend who lives in Geneva, and by way of a conference in SF, she jetted up to Seattle to be with me for a few hours. Such a needed visit, how many astonishing women surround me! I love the funny gifts I get in the mail, like the Ghandi pen from a close friend who has had her own mountains to climb. Distant and past friends from Facebook, or heard through grapevine friends, have reached out in amazing proportions with love, inspirations, music, and simple thoughts for wellness. Prayers are abound from all religions and spirituality. My husband’s high school friend, whom I had never met, had reached out to me with offers of free massages and childcare help. My busy yoga instructor made me a lovely meditation cd, and our favorite restaurant people always offer to make us food.
My chemo visitors also take the cake and never disappoint. I have received three prayer quilts by the talent of my friend’s mothers…they brighten the chemo room. Make-up lessons, errands, laughs, cries, wisdom, chauffeurs, and bag carriers…I am never without love or assistance. If I need alone time, we dim the lights and sleep together, escaping reality, watching buffy, eating gummy bears, or if I need distractions we play scrabble, and make up funny chemo drug names and sometimes actually talk about cancer.
Our employers, my former employer have also been extraordinarily supportive, generous, and caring.
Our family has been extended tenfold…
In the beginning, this independent woman was hard pressed to accept help from even my hubby, let alone friends, neighbors, acquaintances… Now I understand the value in receiving such heartfelt gifts. It gives those around us a place to put their love without demanding my energy, it also is simply true friendship, and how can one deny such a blessing.
This is me. Scarred on my knee, my heart, my belly, my right breast; scars of wanderings, scars of birthing, scars of illness, scars of which my life has created. I am scarred, but I am not solely my scars; they are roads on my inner map, my exterior markings. The word begins to sound so strange when repeated. We are all wounded somehow, sometimes we see the scars, sometimes we do not.
My right breast is gone, my sweaters cave in, as the energy to disguise this wound is nil. There is a thin red line where once lived a breast. And so what of it….I am over the scar tissue. I’m over being scarred by this bitchy whore of a cancer. Take my breast and give me my health. But that didn’t happen as all had thought. They took it, my bosom was halved…they weren’t all that big to begin with, but nicely sized for my body. I wonder how it looked on the stainless steel table all detached and emptied of my soul.
Generally, as apart of womanhood, we believe these beings define us, as they attract, they heave, they feed, they often comfort and Venus stands before us, armless with her breasts beautiful and exposed. They symbolize the core and beauty of a woman in many an art form. What I have learned by way of cancer, of life with astounding women to learn from, is that this is not the case. While our bodies can define us if we allow the world to tell us so, these breasts do not speak to the power of the woman. The core of a woman is her strength, her bravery in life, motherhood, sisterhood, friendships. The core of a woman is the depth of her compassion and love. Beauty is beyond the boob. Strength is within the scars we bear along the path to womanhood.
I was inspired to write about scars from two fellow bloggers. Bill gave me a unique perspective from the male view of the body in his post: http://bwthoughts.wordpress.com/2012/02/25/i-think-i-can/
And by the photos in I have breast cancer’s blog
Thank you for the inspiration to give my perspective.
Hopefully she stands behind her threat…
I am a bit dumbfounded by the Komen Foundation right now (to say the least). My money is definitely going elsewhere. I’m actually inspired to start my own foundation to help those who cannot work and do not have financial support during treatment. I can’t imagine having to get up and get to work everyday while feeling this way. Anyway…more on that later.
Susan G. Komen Top Officials Resign As Backlash Gains Steam
Susan G. Komen Top Officials Resign As Backlash Gains Steam http://www.huffingtonpost.com/2012/02/02/susan-g-komen_n_1250651.html?ref=tw
my sweet son sleeps and gives me the time to reflect.
June began with a cloud (of course) in the great northwest, but it not only rains to keep the ferns green, the clouds have opened the tears to my memories. It is not with serious melancholy that I write this passage though, for in the end the experiences occurred as they should and laid the groundwork for clarity, calmness, and a clear heart. I had always been working towards those, but bumps in the road usually bring us back to what we try to change. Not anymore in the rainy state I am residing.
So, it was one year ago today as I drove home from work, my cell phone rang, and the nurse asked me if I had the time to speak. I said sure, I am driving home. She said, no sweetie, you need to pull over or call me back. My heart sank and I said well…I am sure now that I know what you will tell me. I crossed the bridge and found a spot to stop the car, she wouldn’t continue unless I did so. She told me the biopsy came back showing two forms of breast cancer and that I needed to come in to speak with a surgeon ASAP. She said a lot more but my mind kept saying…seriously, after all the shit I had been enduring, the Gods, truly must be crazy. I told her that I was four days late with my period and she told me to get a pregnancy test as they would need all of the information tomorrow at the appointment. I knew then that the Gods were indeed crazy. You see, for a year and half I said, well…let’s just leave it up to the Gods to see if we get pregnant. No watching the calendar or stressing it…let it just be. Interesting the way life works.
I called my husband to brace him for my arrival home and the news. I arrived home to him in tears, me in tears and the pregnancy test unwrapped and ready. There it was, I was to be the 1 in 3000 women to be pregnant and have breast cancer. The rest of the emotions I have been journaling about here in other posts, so I will side step those for now.
It was a swift and quick procedure, consulting with surgeons, oncologists, and a dear friend’s mom who had been a nurse for 30 years. It was her words that really set my calm and positivity in motion. She imparted to me that I had no choice but to decide things would have the best outcome possible. There is a chemical that kicks in when you get into fight mode, so fight for you and the baby, she kept saying. She also advised me to just get the mastectomy, and not bother with the lump removal. It would have been impossible to keep the baby without having the breast removed. It was a very easy decision. I accessed the few years of my kung fu and karate teachings, called the accupuncturist, and had a conversation with myself and close girlfriends to get rid of the shit, the negativity. I got into fight mode the best way that I knew from the philosophies I had learned from past experiences. This fight is to be a calm one, to protect, not to attack in anger.
The surgery occurred within a few weeks, breast removed…healing commenced with the divine help of a loving husband, beautiful friends and family, and the world cup. I spent every morning watching each match and forgot about the emotions. No wonder my little boy kicked me like Maredona for months, and one time so hard he arrived a month early!
The results were “the best possible results they (my doctor’s office) had seen in years” she said they actually had the entire office cheering as they knew my youth, my pregnancy needed this kind of result. No chemo, no drugs! My decision to have the mastectomy was my “treatment”. I still have these bouts of fear that this may change after breastfeeding. So far so good, every three months two different doctors check my booby, and nothing…
I will continue with my sweet boy’s calm, my family and friends beauty, my accupuncture, philosphies, and the love of soccer to keep me fighting for a healthy body.
Check your boobies ladies………