We’re honored to bring you this Uncommon Story from Adriane Rothstein, a 15-year chordoma survivor who’s been a driving force within the Foundation’s patient community from the very beginning. Her boundless dedication to connecting with and supporting others facing this disease earned her our Uncommon Action Award in 2016. Adriane is a donor as well as an engaged volunteer: she’s been a Peer Guide for over a decade, contributed important knowledge to our Doctor Directory, and helped shape what became our Patient Navigation Service. Here, she tells her chordoma story in her own words, where her gift for sharing her wisdom with others shines through yet again. We encourage you to share your own story next.
First and foremost, I want to say one thing before anything else: We are more than our cancer. We come to chordoma at any age. We have family and friends who surround us. We go to school or work. We have a variety of interests and we seek comfort from many people and places. All of these things are independent of having cancer. We have an identity. So the question is: Do we want to be known as a cancer patient or do we want to choose our identity apart from cancer? I choose the latter. I am, most importantly, an educator, mother, sister, wife, and advocate for others.
My chordoma story began in 2007 when, at the age of 47, I saw a new general practitioner (GP) for what was a long overdue visit about recurring sinusitis. He immediately remarked that if it was recurring, we should take a deeper look. I am forever grateful for his insight. He ordered a CT scan and then an MRI. Me? I thought nothing of it. How naïve: but truly, I had no symptoms related to chordoma.
A week later the GP’s nurse called to tell me an appointment with a neurosurgeon had been scheduled. I remember my words: “Excuse me? Can you back up? Why?” To which she replied, “I’m so sorry, the doctor will call you.” And he did, two minutes later. That was on January 14, 2007.
Three weeks later, on February 7, I had a partial resection at USC with Dr. Martin Weiss. I’m grateful beyond words that this man had seen his fair share of chordoma patients in his 30 years of practicing skull-base neurosurgery. In the hour and a half he spent with my husband, brother, and I, he told us the tumor was too large to say whether it was a pituitary tumor or chordoma. His comment: “Let’s hope for pituitary.”
Dr. Weiss also emphatically warned me against consulting with Dr. Google which made me laugh. Of course I did and was devastated. The predicted life span after diagnosis in 2007 was five (5) to seven (7) years. Would I live to see my seven-year-old daughter, Anna, finish elementary school? Probably. High school? No.
Fast forward to May 2007 after full recovery from surgery when I began proton beam therapy (PBT) with Dr. Lila Loredo at Loma Linda University. I found her and her staff to be well versed in PBT chordoma treatments. Loma Linda has been using proton beam radiation since 1990; it was the first hospital-based PBT facility in the US. I was impressed. With a second grader, it was imperative to stay close to home. I had many friends and family sign up for weekly rotations to drive me the 90 minute drive there and back. Loma Linda was very accommodating, too, scheduling treatments five days a week in the mornings so I could return home, rest, and then pick up Anna from school at 3pm. It became my new job for nine (9) weeks.
In 2007, the Foundation was yet to be founded. It was sheer luck I found a patient navigator: one of my brother’s connections brought me to Delia Chiaramonte, M.D., who formerly owned her own company: Insight Medical Consultants. She had access to medical journals that were closed to me, she had the expertise to read my MRIs and labs, and she prepared questions for me to ask potential neurosurgeons and oncologists. Truly, I will always be indebted to Delia for her support and compassion.
Additionally, some may have heard about the chordoma group on a MSN website. We were a small group of about 400 patients and caregivers that existed long before Sharon Berlan launched the Facebook group. There I met Bill Dorland, Michael Torrey, Norma Jones, Johnny Nelson, and Sharon. This group supported me in every way.
Support and love always comes from my family, too. I am blessed to have a very close extended family. I am especially thankful for my older brothers who are beyond loving; to my amazing husband, Mark, who not only provides me with support, encouragement and love, but has done so without complaint. And, of course, that seven-year-old is now twenty-three (23). Anna is a light to all who know her. She owns a powerful voice and uses it. Anna is an intelligent and compassionate woman. What a privilege it is to be her mom.
But my gratitude does not stop at family. At 15 years with no recurrence, I am thankful beyond belief for my close circle of friends and for the many chance happenings along the way. As odd as it may be, my only side effect from proton beam radiation (little hearing) has brought me a new and more compassionate understanding of what the deaf experience. I am thankful for the expertise of all the medical professionals who crossed paths with me over the years; thankful for the creation of the Foundation that has helped so many with its amazing research and has taken us from a fledgling group to a world-renowned organization; thankful for my chordoma friends and the inspirational staff at the Foundation; and thankful for Josh Sommer and his commitment, talent and devotion to finding a cure for chordoma.
While the Foundation did not exist before my surgery and treatment, it did upon its creation give me a meaningful way to give back to my chordoma community. Since 2007 I have been deeply involved in many aspects of the Foundation’s services. These projects (serving on the Community Advisory Board, on several steering committees for Chordoma Community Conferences, and as a Peer Guide, as well as helping expand the Doctor Directory) I hope, have had a positive impact on the Foundation’s ability to better serve families and patients.
I feel passionately about our chordoma community. Not only is our cancer rare, it is rare to see doctors, patients and caregivers come together at conferences formally and informally to share stories, research, and support. We have built a community and organization that makes us stronger, more informed, and better equipped to navigate one’s journey with chordoma. Finding a cure is, I hope, just around the corner, whether that be for me or the person who follows me.
Lastly, my advice to other chordoma patients is to be as present as you can be each and every day. If you can, allow yourself to say you live with cancer, rather than to frame your cancer as a battle to survive. A battle can be lost. Those who fight and then pass didn’t do anything differently than those of us who continue to live. Cancer is never an even playing field. Starting your journey with the idea that this is not a battle may help you see this challenge as the next chapter in your life, rather than the final one. No one can guarantee we will be free from recurrence, but we can shape our experience during our journey. Please use the Foundation’s resources, and the patient communities on Facebook and the Foundation’s group, Chordoma Connections. And, always, trust your experts after you have chosen them.