In a weird departure, the Old Colony YMCA has asked me to tell them about myself. Not sure how to sum myself up in a few words. I have lived in Easton with my husband Tim for the past 30 years where I have raised my two beautiful daughters, Kelsey and Bridget. For the last 12 years or so I have been beyond lucky to serve as the Oliver Ames High School psychologist and get the chance to work with adolescents and families. There have been tough days and great days—you never know what is next in that box of chocolates!
Fifteen years ago I was diagnosed with breast cancer. I call that my year of living dangerously when I dropped out of the world for a while for some intensive treatment. I resumed my normal life after that and moved on.
Two years ago, following a routine MRI, I learned my breast cancer had metastasized and spread to some pretty vital places. No longer curable, stage IV, I am facing my own imminent death. Through some weird alchemy, I decided to blog about my experience, The Cancer Chronicles, mainly for my children so that they would have a record and the chance to know me on the deepest level possible after I passed away. It kind of took off as I shared the ups and downs of daily life as a terminal patient, my love of Calvin and Hobbes, I Love Lucy and The Life of Pi, and of course, my passion for music to communicate what I can’t always articulate. I am still shocked when people tell me it touches them or teaches them something about how best to live life. I am beyond grateful to have the opportunity to share my life with the community and to feel in some small way I may have helped someone somewhere when they needed it.
Last year, I began an experimental course of therapy, a type of immunotherapy, very cutting edge, in a clinical trial. Three months in, it turned deadly by activating my own immune system to attack all of my internal organs. I pretty much died, lost in a coma, intubated and knocking on heaven’s door. Miraculously my team of doctors at Dana Farber were able to save me, and my family slowly nursed me back to health following intensive rehabilitation therapies. Nine months later I returned to work, to a job I love and a group of colleagues that are the best of the best. Quite unexpectedly, my cancer has shrunk and gone back to sleep for now. I am on pause!
What I have learned since my diagnosis is that metastatic breast cancer research is seriously underfunded. Less than 7% of money raised by big pink fundraisers is given to find an actual cure for the only kind of breast cancer that kills. 140 people die of MBC in the US every single day. Stage IV needs more, much more. From this I discovered Metavivor, an organization which is volunteer run and donates 100% of money raised to metastatic breast cancer research. They also provide critical advocacy for women like me and they are bringing our needs to the forefront of the conservation about cancer. The need for awareness is over—we need research to save lives like mine.
This fight is also more personal for me than you might think. Not a week seems to go by that I don’t lose one of my friends to MBC, often unexpectedly. This week I lost Mandi Hudson of Darn Good Lemonade. She was a great on line support for me and she was so very young. Although I didn’t personally know Champagne Joy, she was a huge figure in the MBC community and she too passed away last week unexpectedly. It is hard to have a consistent voice in the struggle against MBC when all our leaders die week after week. I find it difficult to carry on sometimes knowing my time here is short and there is so much to do. We are all terminally sick even if we do not look it.
For the past two years the Bootys by Brabants Company has held a major event in my honor, Bootys for the Battle, at the Seaport in Boston, to raise money for Metavivor. Last summer we raised $30,000. This summer we hope to surpass that. In the time that I have left, I plan to do all I can to shine the spot light on MBC and the need for research.
This past winter the YMCA reached out to me and asked me to join their Live Strong program, designed to provide special physical and emotional support to people like me that are living with cancer. What a blessing to be in such a special community of people who embraced me with open arms and more opportunities to share and learn.
Now the Old Colony YMCA is honoring me with their Community Champion Award at their annual Spring Fling dinner dance on May 5, 2017 at the Easton Country Club. I don’t deserve it but I’ll take it! Of course I couldn’t do any this without the love and support of my army of friends. Hopefully some of you will join my family and me at this event. After all, I don’t travel without Blanket, the coconuts, Pina Colada and the Limes. Tickets are at: give.classy.org/eastongala2017
We only have one life, one chance to get it right. I have learned love always shows up, kindness always wins. By living in community with others we get back a hundredfold what we give. Remember #stageivneedsmore
Holy cow! May 5 would be S&M anniversary! What a great day! I’m in for a donation!
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Beautiful. Great read on this sun-filled afternoon.
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I’ve been following your blog for some time. Thank you for sharing this. So many folks just don’t realize what it is like to live with a terminal diagnosis. My only child was diagnosed with Stage IV Merkel Cell Carcinoma (a cancer worse than Melanoma) in June of 2008 at the age of almost 15. What started as a little bump on his arm turned into full blown terminal cancer. It was in too many lymph nodes to count and he also had eight tumors inside of him, two being on his lung. It had also spread to the bones in his ribs, hips and legs. He was treated at Childrens Hospital in DC and given three months to live if he didn’t respond to chemo. He had grueling chemo and radiation and two back to back bone marrow transplants. My miracle boy has been cancer free since Sept. of 2009. He is now 23 and still suffers from the side effects of his treatment but he is alive and living life !! Miracles do happen and we pray that you will get your miracle. You seem to be well on your way !! You will always be in our prayers Barb. Stay strong !! You sound like one tough coconut yourself !
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Wow! That is a story! I’m not sure I would have held up so well had it been one of my daughters. I am so happy your boy is doing so well after such a hard adolescence. I hope he has the opportunities to travel and experience life away from Cancer House — he deserves it more than anyone.
I will keep hoping for my miracle but we never know what is around the next corner.
Stay in health and peace.