Know Stage IV: An Ode to Those We’ve Lost

September 18, 2017

For LBBC’s Know Stage IV campaign, on Sept. 18, members of LBBC’s 2017 class of Hear My Voice Outreach Volunteers have written about what they want other to know about metastatic breast cancer. Learn more about Know Stage IV

For Know Stage IV, Kristen Kilmer writes about the “world of loss” that those in the metastatic breast cancer community face, and honors members of the 2017 class of Hear My Voice Outreach Volunteer who have died this year.


In my March 2017 interview for the Hear My Voice (HMV) Volunteer Program, I remember Living Beyond Breast Cancer’s CEO Jean Sachs asking me how I'd feel getting to know advocates whose cancers weren't responding to treatments as well as my cancer had responded. So far, I’ve been one of the lucky ones. At the time of the interview, I had been enjoying “no evidence of disease,” or “NED,” for just over a year. I’m currently more than 2 years out from my stage IV recurrence and still NED. 

It would have been easy for me to plug my ears, close my eyes, and pretend that everything was just fine. Trust me, it was tempting. I knew the statistics. I’d done the math. I knew if I continued to do well, I’d be immersed in a world of loss. On the flip side, I knew there were no guarantees that I’d continue to enjoy NED. You see, cancer is sneaky. I’d heard stories of those who had been NED one month only to be diagnosed with brain mets the next. I’d heard about those whose cancers were not active at the time of their deaths, but who instead succumbed to the side effects of years of harsh treatments. 

I thought long and hard before I submitted my application for the Hear My Voice Program, but I felt strongly that the only way I could help was by engaging with the metastatic community in a way I hadn't before that point.

My first doubt about that philosophy came over me during the Met Up die-in in Philadelphia, which took place the weekend of LBBC’s Thriving Together: 2017 Conference on Metastatic Breast Cancer. As I watched the men and women in our group lie down on the ground of the Independence Mall and symbolically die, I wanted so badly not to be a part of this group. I didn't want to lose friends. I didn't want to watch families grieve. And ... I didn't want the constant reminder of my own mortality. Then HMV alum Beth Caldwell came by me as I stood to the side unable to bring myself to lie down and die.

(For those of you who don’t know Beth Caldwell, she’s a metastatic breast cancer rock star. She and a small, but growing group of women and men are leading a rallying cry for stage IV patients to no longer just lie down and die (ironic at events like the die-in, I know). They’ve inspired a movement, the same movement that led me to submit my application to the LBBC’s Hear My Voice Program.

The small in stature, but larger than life Beth handed me a tissue and gave me a smile as she passed by me, and I remembered the importance of what we were doing and that there can still be beauty and kindness in the ugliest of situations.

I’ve remembered that moment as my HMV group of 27 dwindled to 22 in less than 5 months. MaryAnne DiCanto, Stacey Hood, Kristie Godwin Rolan, Kim Johnson, and Paulette Thompson-Clinton were amazing women. They had families who loved and needed them. They had dreams for the future, and they were fierce advocates for a world without the devastation of cancer. It is my duty to speak for them as long as I have a voice and to continue the advocacy work they started, and it is an honor to remember their beautiful souls.

Learn the facts. Support the cause. Know Stage IV.

Add new comment