A prominent voice in the breast cancer community, Lisa Bonchek Adams, died of metastatic breast cancer last week.  I followed her on Twitter and Facebook, and I read as much of her writing as I could.   She was initially diagnosed with early stage breast cancer.  She underwent all the treatment for early stage breast cancer, including having an oopherectomy.    Lisa writes about that here.   She did everything she was supposed to do treatment-wise, yet she still fell into the 30 percent category of those whose breast cancer recurred stage 4.

As someone with early stage breast cancer, her story is bone-chilling, frightening to me.   My biggest fear used to be developing breast cancer like my mom, and that’s happened.  My biggest fear now: my breast cancer coming back stage 4, and I die at a young age just like her.  Stage 4 is the nightmare.  It’s my nightmare, and at the same time, it’s made me beyond appreciative for my current good bill of health.  I feel a heightened sense of panic and anxiety every time I visit with my oncologist and that won’t ever change.

I won’t turn my back and pretend that metastatic breast cancer doesn’t exist because for so many, my nightmare is their reality.  I have come to accept that this may happen to me, but I won’t ignore the fact that approximately 40,000 die of this disease every year.   I won’t ignore those like Lisa, and so many others who died of a disease packaged up in a prettysexycool pink exterior.

Lisa did not subscribe to the Pink Ribbon Culture.  She was critical of Komen.  She railed against the Pink Ribbon Culture with open, honest talk about the disease, and its effects.  She talked openly with her three children about her disease and its ultimate outcome.  Since I barely remember my mother because my parents shielded me from the last six months of her life, I appreciated Lisa’s honesty with her children.  I wished my parents hadn’t shielded me so much, then perhaps I would have a memory of my own mother.

Lisa also didn’t subscribe to the cancer pep talks, and in a May 2013 Salon article, she commented:

“I don’t need to be told to fight the good fight to beat it or the key is to just stay strong or that it’s mind over matter.  You force me to assert my knowledge, insist upon my diagnosis, explain the desperate nature of my disease, spend my time defending my sentence.”

After her death, a friend of mine with Stage 4 breast cancer posted something Lisa wrote entitled “When I Die” on Facebook.  Here’s a snippet from that post:

Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place:

There is no better place to me than being here with them.

They have learned about grief and they will learn more.

That is part of it all.

(For all those who believe that a positive attitude is all you need to beat breast cancer, how would a positive attitude ever trump a parent’s desire to see their children grow up?  Riddle me that, Batman.)

While I often refer to my mother as my guardian angel, the second line really punched me in the gut: “There is no better place to me than being here with them.”  Oh my heart, it hurts.  As a woman whose had breast cancer and the daughter of a woman who died of the same disease, I gained insight into what my mom had to have been feeling as she knew her time was limited.

If you, dear Get Up Swinging readers, want to help those with metastatic breast cancer and honor Lisa’s memory, then you can do so here.

Lisa didn’t lose her battle or a years-long fight.  She died of metastatic breast cancer at the age of 45.  The metastatic breast cancer community lost a powerful voice and advocate, but her words will live on.