Finding Me Again
I have been involved in the cancer movement my entire professional career. I began over 20 years ago working as a Child Life Specialist in the hospital. For those of you who don’t know what that is (which is probably many), I worked with children, teens, and young adults diagnosed with cancer. My role was to provide education, support, and some “normalcy” to a very difficult and most challenging time.
Luckily, during my undergraduate course work, I had an opportunity to interview a pediatric oncologist and Child Life Specialist for a paper. It was from that short time visiting with them that my career aspirations were set in stone. I started volunteering at UCLA Medical Center with the plan (in my head only of course!) that they would hire me eventually. I had them create an internship for me, volunteered daily, and waited eagerly for the first job in 13 years to open in the Child Life Department. My two years of determination (my parents may call stubbornness) worked out and I started on a path that has changed me forever.
I learned so much from my clinical work. Meeting many amazing patients and families has made my experience feel like more of a gift then a job. In 2015, I shifted into a new role as the Hospital Program and Services Director for Teen Cancer America. My focus has been in working to change the cancer care system—helping medical centers across the country look at this unique age group as its own entity and provide specialized space, teams, treatment and research for this important population.
I would be lying if I said I never thought about what would happen if I ever got cancer. Having worked with these amazing young people and their families for so long, I think it’s somewhat of a natural wonder especially in the beginning. There was always an indescribable spirit embedded in each patient and family that often made me wonder where does it come from? Would I have it in me as well?
In 2017, I found the very answer to the question I had always wondered about—I was diagnosed with stage IIb Invasive Ductal Cell Carcinoma Breast Cancer. Though not a young adult by any means I was still young to receive a diagnosis of this particular type of cancer.
For all I knew about pediatric cancer, I knew very little about adult cancer. I expected from multiple conversations with many doctors that the most likely scenario would be that I’d have my surgery, take medicine for the next 10 years or so and that would be that. It wasn’t until they looked directly at the tumor and ran a test called an oncotype that they determined I would also need chemotherapy in addition to double mastectomy.
As my doctor told me to expect the loss of my “long, beautiful hair” (her words), I honestly was more focused on the steroids and other intense treatments I would soon be starting. I knew my hair would grow back—at the time this felt like the least of my issues. I went through treatment and fared pretty well, encountering a few bumps along the way but that was to be expected.
What surprised me the most in all of this was the intense focus I had on my hair growing back. I had seen this a million times in my clinical work but somewhere along the way had sort of fooled myself into the notion that the process was much shorter then it actually is (especially for women). It seems somewhat silly to spend so much time worrying about this and I honestly felt much guilt for doing so. I was appreciative and thankful to be alive—there were many more pressing issues to deal with.
In an attempt to find something of my pre-cancer self, I reached out to my good friend Matt Coulter for help. He knew me well and had my back from the minute I was diagnosed—when I lost my hair, he shaved his head in support. Matt connected me with the amazing Jill Buck and Riawana Capri, who shared with me their new organization, BeYOUtiful. I was so honored to be one of the first recipients of their gift of charity.
Jill guided me through every bit of the hair growing-back process. For me, this meant learning how to tame my new VERY curly hair, which I didn’t have before I got sick. With her help, I started to feel more and more like me again. Once I was able to add some extensions, things really began to change. My confidence returned and when I looked in the mirror, though other parts of me were transformed forever, I realized I too had that same spirit I saw in my patients over the last 25 years. This same strength that got me through my treatment is also what has given me the ability and passion to make a difference in the world. I am forever grateful for the kindness and compassion showed to me by the entire BeYOUtiful team!