Falling Down Two Times, Getting Up ThreeBy Phuong GallagherJanuary 2019
Cancer can happen to anyone. Even those of us with no family history, who exercise regularly, and who eat a very healthy diet. I was only 29 when diagnosed with colorectal cancer. As a young patient, fertility was and probably always will be the most devastating loss for me. My oncologist gave me three weeks to look into harvesting my eggs before starting a treatment regimen that would launch me into early menopause. We saw an infertility specialist and were told that it would cost us anywhere from $10,000-$25,000 to begin the process and even then, nothing was guaranteed. It was the beginning of my cancer journey and I already felt defeated. I cried inconsolably because I had always dreamed of raising a big family, and three weeks was simply not enough time. My husband shared in my grief over this, not only through his own feelings of loss, but because he knew how much this meant to me. I felt like we were mourning a child that we never had the chance to show our love. My husband did everything that he could to comfort me – hugging me, telling me that no matter what we’ll find a way – but all I could say was “You don’t understand. Ly’s have babies.”
Although my cancer center had a support group, I never felt that in-person support groups were right for me. I relied on my husband to be my support and he has always done it well. He can find funny in the darkest of places and that has been the cornerstone of how we have dealt with all the stress and uncertainty. After the doctor confirmed my late-stage diagnosis, we sat in the parking lot, a cloud of heaviness hanging over us. I begged him to “say something funny” because I was on the very edge of falling apart. In a split second, my husband turned to me and asked, “Where’s your Buddha now?” And just like that, he brought me back from the precipice and we laughed until we could hardly breathe. We live in the here and now because tomorrow is not guaranteed. I no longer want things – I ask him to gift me with experiences because the memories we build are precious.
A few years later, I happened to meet a survivor who recommended that I check out The Colon Club online. I found not just a support group, but a very knowledgeable colorectal cancer community. I discovered that there was SO MUCH MORE I needed to learn about my disease. I browsed through the forum and found out that other women had their ovaries surgically pinned out of the radiation zone, possibly preserving their fertility. I wish I had thought to ask and will forever regret not communicating how important fertility was to me. I finally understood the importance of asking questions and being an active participant in my care rather than being a passive consumer.
Joining the community led to remarkable change in my life. The forum allowed me to see what people were discussing, triggering my own questions and allowing me to share my experiences. I took my first steps in advocacy by getting educated about my disease and started to speak up for myself. Becoming a part of a community of people who were in similar circumstances helped me to no longer feel like an anomaly – the lone honorary octogenarian half a century younger than all the other patients. I became profoundly connected to people like my friend Belle, who inspired me to fight with her mantra, “Don’t retreat. Reload!” It ignited a passion in me, further fueling my journey in becoming an advocate.
My relationships with my doctors transformed as well. To my surprise, asking questions and voicing my opinions did not make them see me as a pain-in-the-neck. Quite the contrary! It allowed us to work through my concerns and come up with treatment plans that we all agreed on. After seeing the change in me, my doctors asked if I would be willing to speak to newly diagnosed patients. I eagerly agreed and found myself guiding them through what they might expect in the coming weeks, shared tips on how I handled side effects, and talked about things that were not necessarily discussed in appointments but were important to be aware of (such as chemo dry mouth leading to dental decay). One common stressor is fear of the unknown. Once you know what you are dealing with, you can come up with a plan and feel like you are doing something about it.
Mentoring new patients brought me comfort because even though they had dark paths to follow, I felt like I was using my own tribulations to be a lantern so they could see just a little further. It was a feeling of satisfaction and fulfillment unlike any I’ve had. This was significant because it inspired me to join organizations like the USC Norris CSAC where I endeavor to make a bigger difference in care for patients, staff, and doctors.
Advocacy has been a personal evolution and has eternally changed who I am. I am stronger emotionally and fit to fight. Each step that I have taken in my advocacy has emboldened me to continue and gain confidence that I can take the next step. Nervous about public speaking? Suck it up buttercup and accept that invitation to be the keynote speaker at a women’s health conference. It turned out to be an incredibly moving experience. Growing as an advocate has allowed me to regain control taken away by my disease. I think back to the person that I was, sitting on that park bench with my husband so long ago. I still grieve over the loss of my fertility and that regret will never go away, but I have learned how to use it to empower myself. It will always be my reminder of why I have to let myself be vulnerable and share the hardest parts of my story to help and give hope to others. So many people wander through their lives, not knowing why they are here, but I have found my purpose. While I cannot be glad that I got cancer for the things that it has taken away, I am grateful for what it has given me: the unbreakable friendships I have made, the courage I have found, and more living than I could ever have hoped for in my life.
Phuong (Ly) Gallagher is a Stage IV colorectal cancer survivor in active treatment. She is a member of the USC Norris CSAC, a member of The WunderGlo Foundation’s advisory board, and Executive Vice President of The Colon Club.
USC Norris Cancer Survivorship Advisory Council Blog provides a broad range of opinions which do not necessarily represent the opinion of the USC Norris Comprehensive Cancer Center. This and all information related to cancer, cancer treatment and healthcare should be discussed with your physician.