Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Marcia Donziger is the founder of MyLifeLine.org, a nonprofit organization that empowers patients and caregivers to build an online support community of family and friends to foster connection, inspiration, and healing through free, personalized websites.
My cancer experience
I was 27 years old, newly married, and ready to start a family, when suddenly—like the jolt of a 10-point magnitude earthquake—cancer violently shook my world.
I had been diagnosed with advanced ovarian cancer, and one of its most devastating side effects was infertility caused by an emergency hysterectomy. The aftershocks of this earthquake kept coming—surgery, chemotherapy, emotional distress, and even divorce. My fertility was destroyed, along with my marriage and dreams of starting a family.
As I heard the words “you have cancer,” I felt intense grief. Depression and anxiety stepped in, and I felt alone. While I was enduring chemotherapy treatments, my friends were getting married and having babies that I would never get the chance to have.
To help me handle this type of grief, my oncologist referred me to a special social worker, Susan. She guided me to visualize the exact features of the babies I thought I’d have. I imagined curly dark hair, hazel eyes, and their little faces. I mourned, knowing I would never hold or care for them. Throughout chemotherapy, I trusted this grieving process and gradually let go of old dreams to make room for new ones.
Even though I could not create children in my own body, I was determined to become a parent one day.
In 2005, I became the proud mom of twin boys born via a surrogate with donor eggs. Katrese, our surrogate mom, and I became friends during the pregnancy and beyond, as we got to know each other at the various doctor appointments.
The start of something new
In addition to giving birth to my children, Katrese became a founding board member of MyLifeLine Cancer Foundation, along with me. MyLifeLine is a nonprofit organization that exists to end the isolation, stress, and anxiety following a cancer diagnosis. We connect patients and caregivers with their friends and family through a safe, secure social network, so families can build strength as a community. Cancer-specific resources are shared, along with resources to assist with logistics and financial challenges. I wish something like MyLifeLine.org had been available when I had cancer.
5 strategies for enhancing your patient advocacy skills
Since my diagnosis, I’ve used these strategies to overcome challenges and build on my skills as a patient advocate:
Leverage your character traits. We may lose a lot from cancer, but I also gained important character traits. There are 2 that I am most grateful for: emotional courage and grit. For me, being an advocate is a rewarding, character-building experience that relies on the courage and grit developed throughout the cancer treatment process.
Connect with other advocates. I’ve learned that it is better to embrace challenges with your supporters around you than to face them on your own. What I didn’t know before cancer is that there is a welcoming, intelligent, and compassionate community of advocates ready to help and work with you to reach your goals.
Be open to new ways of solving challenges. Always know that there are various paths to achieving your goals. You can team up with an organization that helped you, or start your own organization to tackle a problem in a new way.
Be persistent. You will be told no. You will be told that’s not how it’s done. Be creative in crafting solutions to the difficult problems, and you will achieve your goals.
Let go of control. This is the hardest one for me. I’m still working on it. When I decide I want something to happen right away, I stop being patient and my stress level goes up. When a project or a partnership isn’t moving at the pace I expect, I now have a ritual: first, I acknowledge and recognize the feeling of impatience. Once I identify it, I ride the wave of the emotion until it subsides. Only then can I let it go. Letting go of some control has been instrumental in relieving my stress level—and it’s healthier than stuffing emotions back in or ignoring them.
I once read that only 2 things are definite in this world: the power to create and the freedom to choose. This resonates with me. As advocates, we are empowered with the freedom to choose a path that leverages our personal experiences to help the greater good. Advocacy is rewarding work, and I’m proud of what MyLifeLine has accomplished.
Back to my story, the birth of my twins has helped me practice gratitude every day now. Cancer may have closed some doors, but it also opened new opportunities to advocate for others. As a bonus, I’ve also found that advocacy work has become part of my lifelong healing process. Maybe it can for you, too.