A story of survival and fellowship

I am always so grateful to have the opportunity to talk with patients at TrialReach; every day I hear stories of incredible courage in the face of devastating disease.

I have to say though, and maybe for personal reasons, the women I have spoken to recently about a Breast Cancer Trial, have really touched me to the core.  This trial is for women who have locally advanced or metastatic disease.

In 1996, at the age of 37, I was diagnosed with breast cancer.  I had two young children and the first thought at hearing the word cancer was that I was going to die and who was going to take care of my children? At the time they were 10 and 6 years-old.  I was very scared and to be honest, fear ruled me for a long time after the initial diagnosis.

Education and insight into the disease were what empowered me and gave me the feeling of having some control over my life. At the time the internet was not the information highway it is today – so armed with pen and pad I went off to the library and took from the shelves every book I could find on breast cancer.  I sat on the floor surrounded with my army of books and started to read through it all. My faith kicked in and gave me the inner strength needed to complete the simplest of tasks.

Some people prefer to hand everything over the doctors – what you don’t know won’t hurt you. I was not one of those people, I needed to do something, I needed to know what I was facing. I wanted to know everything I could about cancer, chemotherapy, radiation, potential options for surgeries.  Why an ordinary cell going about its daily business, turns from a healthy cell to a cancer cell.  What the difference was from a well-differentiated cell to a poorly- differentiated cell and how the rate at which this happens can determine how aggressive the cancer is.  I wanted to know it all, as much as my brain could take, down to the minute detail.  Thankfully, I had a doctor who was very supportive and took hours explaining and drawing pictures so that I understood exactly what was happening.

One of the things I discovered was that my surgeon knew a lot about his specialty – surgery.  He could not answer many of the questions I had about radiation, about chemotherapy or even the pathology.  So I pursued the ones that did know and with my folder under my arm, I started to pound the pavement, knocking on office doors.  I demanded answers to my questions.  I remember one day before one of my biopsies asking to meet with the Director of Pathology at the hospital because I wanted him to know that I was not just a tiny piece of tissue under a microscope.  I was a woman, a wife, a mother, and daughter and that “I” mattered.  So when he looked at that little piece of tissue under the slide he was reminded that what he does matters and that there was a whole family who were invested in me and my need me to survive this.

I could go into the whole story but for today I just wanted to give you some background so that you understood why I am so inspired by the women I have spoken to recently.

First there was Lara, a beautiful young mum who discovered her breast cancer at 30 years old when she was pregnant with her second child.  She was sent a gift of beautiful scarves that had been worn by another survivor, with a message of hope: “You can do this”.  After she had completed her treatment, she passed those scarves along to other women.  The wish was that when a woman wraps a Hope Scarf around her head she would feel the strength and determination of the women who wore it before her.  With that “Hope Scarves” was born.  Please feel free to go to the website where you too can read about the organization, tell your story or request or donate a scarf to this amazing cause www.hopescarves.org.

Another cancer advocate I admired greatly researches all kinds of state-of-the art treatments and clinical trials for her husband who is living with breast cancer. She herself is a warrior for the cause and will not sit down and let cancer take from her the life she has come to know and love.

Many of the women have come together and started Facebook groups.  A lovely lady invited me to become part of her group “Breast Cancer Champions”. An extraordinary group of women reaching out with open arms to support others who are living with the breast cancer diagnosis.

Others have become bloggers and tweeters.  A wonderfully inspiring, enthusiast I spoke to, AnneMarie, really hit me with her story and I connected with her immediately.  She is a fierce advocate, activist and blogger.  She is the epitome of a woman empowering others to stand up and fight cancer.  She attends conferences and spends much of her time working with others.  She also has a website dedicated to breast cancer and getting the word www.chemobrainfog.com.  Her blog was voted as one of the best cancer blogs in 2014 by Healthline.

There are many people out there looking, fighting, disrupting and calling for change.

Lastly, I would like to leave you with this thought.  When speaking to a lovely woman recently, I asked her what it was that made her want to participate in a clinical trial and what she had to say left me speechless, she said “I thought of all the millions of women that have participated in clinical trials before me so that I could get the treatment I have today”.  It really made me think – I may not even be here today if it was not for all those women, and for that I say “thank you”.

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“Be the change that you wish to see in the world.”

Mahatma Gandhi

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