Advocate of the Month – November 2014 logo

The Mesothelioma Cancer Alliance would like to welcome Amanda Linehan to our blog to share her story of how cancer has affected the lives of her loved ones and the impact it’s had on her life. Amanda writes on her blog at Organicglory about living a healthy lifestyle. Read and share her story below.

Last month, I joined a friend for his 30th birthday on a fancy dinner cruise around Boston Harbor. It was a magnificent evening, full of great food, dancing, and stunning skyline views. But as we passed by the city’s North End and Charlestown Navy Yard, I couldn’t help but reflect: how did I get here, on an expensive boat cruise skimming the shoreline, when just one generation ago my grandfather walked the same distance by foot to get from his home in Boston’s Italian section to his job as a laborer in the naval shipyard?

I lost my grandfather on Christmas Day in 1995. After years of working in the shipyard, toiling amid asbestos and countless other toxins, he developed mesothelioma and lost the chance to see any of his grandchildren graduate from high school, get married or have their own babies. None of us have had to work a day in manual labor, and all of us attended college – in part thanks to money that he set aside for us, with the same earnings that cost him his health. Though he didn’t have one for himself, he knew that leaving us a path to higher education was a critical part of his legacy, and I’ve been able to appreciate all that I have in life so much more acutely because of that sacrifice.

Unfortunately, cancer went on to touch me even more closely as an adult, when my mother was diagnosed with advanced colorectal cancer. Thanks to a flexible boss, I was able to take extra time off to share the burden of caretaking with my brother. My mom lost her hair, the lower part of her digestive system, her sense of taste, the ability to feel hot and cold in her fingers and toes, much of her balance, the capacity to drive, and the ability to leave home without knowing where to find the closest bathroom, in case her rebuilt intestines staged a revolt.

That was four years ago, and many of the symptoms – the result of life-saving, but extremely intense, treatments – have lingered. She still walks with a cane, needs help opening jars, can’t be trusted not to burn herself cooking, and struggles with both public transportation and walking outdoors during winter. She’s also forgetful and requires extra support in remembering appointments, filling prescriptions, booking travel and paying bills. Yet with determination, my mother has gone on from all those surgeries, chemotherapy drips and radiation burns to live a full, if modified, life. She even babysits my 14-month-old daughter one day per week, and spends half the year in Florida living with her younger sister to recuperate in the warmth and sunshine. With a cane, she’s regained some of the independence she lost at her diagnosis, and an aura of thankfulness pervades her everyday life, marked by oncologist appointments, body scans and medications though it is.

Me, though? The whole thing made me angry.

What right does cancer have to steal the bodies we once cherished, to remake us in an image of sickness and death, to rob us of the things we counted most important to our livelihood and sense of self? Will it take away years she should have had with her granddaughter? Will she see my younger brother get married? Will she do all the traveling she’s dreamed of, and take lots of photos, and make years of memories?

Only time will tell, and meanwhile my anger solves nothing. In fact, it marks a “win” in cancer’s column, and I’m not willing to let that happen. So, I’ve taken the power back: I fundraise, by becoming a cyclist in the Pan-Mass Challenge, a 100-mile bike ride whose proceeds 100% benefit cancer research. I educate other women on the importance of getting routine preventative screenings for cancers of the breast, skin, and of the respiratory, reproductive and gastrointestinal systems, including the oft-dreaded colonoscopy – the very test that saved my mother’s life. I spread the word about lesser-known cancers, such as mesothelioma. And, most importantly, I count my blessings and live each day as it comes.

We can’t control the length of our life, but the way we live it is in our hands. Cancer may have the upper hand right now, but it taught me an important lesson: we determine our own legacy, and the shape of our years, however many or few they number. Everyone can play a role in making cancer less prevalent, and we must. There are things cancer has taken from me that I’ll never get back. But, I am choosing to spin that sadness and anger into a place of empowerment and love for the benefit of others. I hope you’ll join me.