I was born in NYC in 1956, the youngest of four sisters. We lost our father when he died of cancer at age 38, I was 8. Soon after that I started playing guitar. My youth was ruled by music and when I finally escaped school I began performing as a blues singer/guitar player, during the glory days of Asbury Park’s music scene. I moved to Key West in ’75 and had a wonderful, eight year run on that magical island before emigrating to The Netherlands in ’83. Music was my ticket to freedom; it’s taken me all over the world and was more of an adventure than a job. Things were going so well, towards the end of my 40th year I thought, “This has been my best year yet.” Then something happened that changed my life.
In 1997 my sister Janey, age 46, was diagnosed with the rare and aggressive inflammatory breast cancer. My other two sisters and I dropped our lives to care for her. She had high dose chemo and a stem cell transplant; her fight was brutal and short. Six months after Janey died, my sister Maureen was diagnosed with bladder cancer, supposedly an old man’s disease. She was 49.
After Janey’s worst-case scenario we couldn’t help but question everything and I began my search for information. I met others like myself through the internet and realized the need for patients to be heard, to be validated and to have access to information on all the options. Bladder cancer is rare in women and the information was scarce. That’s what drove me to create this website, with much help from my husband. WebCafe went online in June of ’99, a time when information about bladder cancer was hard to find.
During this time I noticed strange changes occurring on my breast but I laughed at myself for being a drama queen, chalked it up cellulite (or whatever) and did not listen to the little voice in my head saying, “Get a mammo!”. I remained in denial for about a year until my husband noticed the lump which turned out to be malignant, after all. I was 43.
While the rest of the world celebrated the millennium, I had a mastectomy followed by radiation and 5 years of hormonal treatments. I refused chemo because I was too afraid after having seen it ravage my father and sister. The prognosis for stage IIIC breast cancer is grim and there have been many complications and scares, but I passed the 7 year survival mark at the end of 2006. My sister Maureen also continues to remain cancer free – thankfully. We know we’re lucky. We’ve lost many family members to this disease and a lot of friends too.
I found that it was much easier dealing with my own diagnosis than those of my sisters. After having straddled the fence I feel that cancer is harder on the caregivers in almost every way.
My breast cancer diagnosis along with its treatments and side effects ended my 25 years as a musician, while my involvement with cancer patients and caregivers evolved into what is now a full time “job”. Thanks to the incredible ongoing support of my husband, I’m able to devote my time to maintaining this website, follow the research, attend conferences as well as communicate with experts, but most importantly to lend assistance via WebCafe’s support group and online forum .
It’s funny how cancer changes things; my instruments are dusty and I hardly sing anymore, but I don’t miss my old life. I still travel as much as possible, collect beads and make jewelry, like to grow flowers, hang with the dog and cats, tour the canals of Amsterdam in my little speedboat, receive guests on our houseboat, and I recently began to paint. Now, my idea of a hot Saturday night is having a cosy dinner with my husband and cuddling up to watch a good film. That night life was killing me anyway.
The knowledge of having helped one person feel less afraid is far more gratifying than a round of applause could ever be. Patient advocacy is far more interesting, satisfying and inspiring. Everywhere I look I find deep wells of courage and learn from it everyday. More than ever, I appreciate how the world is a beautiful, magical place. Life is precious, but it can’t be taken for granted.
You’ll find examples of my music and paintings and Maureen’s stained glass in WebCafe’s community art and music gallery, here