Voices on Cancer is an award-winning Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Annie Achee is the President and Medical Research Liaison of the National LeioMyoSarcoma Foundation, which builds leiomyosarcoma (LMS) awareness, provides patient and family resources, and funds research projects to accelerate treatment advances. Her advocacy work celebrates her husband, who was successfully treated for the disease.
My advocacy story
My husband, Mitch, a physician, was diagnosed in 2011 with leiomyosarcoma (LMS), a rare cancer I could hardly pronounce or spell. I immediately started learning as much as I could about it as quickly as possible. I became an active patient advocate and caregiver who participated in his care and played a supportive role throughout his treatment.
Once we were told that, fortunately, there was no evidence of disease (NED) after treatment, I pursued a survivorship care plan to optimize “our” potential for avoiding a recurrence. Then there was nothing more to be done except to hope for his continued NED status. But recurrence of LMS is common, and one of the difficulties of being a caregiver is the constant fear of an unknown future.
I didn’t want my husband to see me fearful and anxious day in and day out because it wasn’t going to help him. It was time to dig deep into my heart and soul and decide how I was going to handle my emotions. I concluded that being a bystander was not the answer for me. I needed to channel my difficult feelings into something more productive and positive—helping others deal with the same fear and anxiety I had and guiding them through the journey they didn’t choose.
Sharing my caregiving experiences and emphasizing the need for LMS education and self-advocacy was my new purpose. I was drawn to the National LeioMyoSarcoma Foundation (NLMSF), started in 1997 by patients and families wanting to support one another. The NLMSF turned out to be such a good fit for me that I stepped up to a leadership role in 2015.
Instead of worrying about what I can’t control, I focus on patient and family education, as well as understanding the research landscape. I have such great respect and affection for the people who are a part of the NLMSF community. By talking directly with patients, families, and caregivers all over the world and hosting monthly patient-driven group phone conversations, I’ve learned firsthand about courage, grace, strength, and resilience. While they’re the true champions of hope, research clinicians are the heroes who walk among us. My admiration for them stems from knowing the level of dedication and commitment they bring to advancing LMS treatment and survivorship.
A central aspect of the NLSMF mission is to build bridges of collaboration between researchers and patient-family education programs throughout the United States and Canada. Reaching out to other advocacy organizations to bring the latest information to patients and families is another core function of NLMSF. We create these partnerships with an “attitude of gratitude” for the shared belief in our mission because we know we can achieve more together. It truly takes a village to share valuable resources and information.
While I still think about the fact that Mitch’s cancer status can change, my work with the LMS community is a positive coping mechanism for an uncertain road. Unity makes all the difference to this rare cancer community—and to me.
Find your purpose
Fear, worry, and anxiety can stay with patients and caregivers, even after treatment ends. For some people, advocacy can be a way to manage these emotions so they don’t become life’s focus. What I learned about coping with uncertainty through advocacy is this:
Everyone can find a purpose. Life is not always what you would want it to be. But, being able to say “I have a purpose!” can be a positive constant that you can control. Your advocacy purpose can be anything that you want it to be, from providing support to those living with cancer and raising public awareness about cancer, to advancing cancer research or improving the quality of cancer care.
Don’t let circumstances derail your purpose. In moments when you reflect on the “why” of the difficulties you’re enduring, try to remember that we all have the power to make a difference, one person at a time. Focusing on your purpose can help you anchor yourself during this unexpected, unchosen journey.
Encouraging others can bring out your best. Whether you’re a patient or caregiver, you have the opportunity to find the essence of who you are and who you can be in the face of adversity. Advocacy work that supports others whose lives have been affected by cancer might be the very thing that makes you strongest.