Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
I never fully understood how ingrained my children were in my soul until I had to give serious thought to the end of my own life, and I knew I didn't want to face it without them.
I am always so restrained in my emotions about my own cancer. I rarely cry about living with a disease that may one day kill me, and the list of things that trigger any emotions to surface is very short. Even when sitting at the funeral of someone that died of the very disease I have I can remain impassive. I wonder if my ability to compartmentalize death makes me harsh and comes across as callous, or if it's really just self-preservation in a metastatic world that is dying all around me. I will admit that I can be stoic about cancer and death, except when it means leaving my children without their mother.
When I met with my palliative care doctor to discuss and put down on paper what I would want for end-of-life care should I arrive there sooner than I would like, I couldn't get through a single question without bursting in to tears - the kind that come from so deep that anything you say is gibberish, and no amount of hospital-issued tissue can absorb what pours out of your eyes and nose. I took comfort in knowing she was roughly my same age and a mother to her own set of young children. I knew her empathy wasn't something she was taught in medical school, but something authentic.
Though I know death is very much a reality for someone like me, I still keep it at arm's length. But this was a necessary conversation to have, regardless of my potential to live as long as one might hope or not. And it was even more necessary because young children are part of the equation, and their presence will always guide the decisions I make.
At the end of our discussion about what I would want should I not be able to speak for myself, she looked me in my swollen, teary eyes and summed it up. "It seems like your number one concern and priority in each of these questions we've gone over is that you have your children close to you." I nodded yes as I knew saying it would probably put me over the emotional edge for the umpteenth time that hour.
Because of this disease, I have a unique intimacy with my kids, and my physical proximity has so often been all I have been able to give them during the years of treatment and being stuck in bed reeling from side effects. "It is very important to me that my children aren't traumatized by my death, but rather walk away from it as the final, intimate moment of us being together," I told her. As we concluded our time, I wiped my nose once more and told her it really was all about my children — something I knew she could clearly see as I cried my way through our appointment. "I was there for their first breath, and it would be very important to me that they are there for my last."