Fare thee well, Lisa

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.

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Book Report: “Wild” by Cheryl Strayed

“I didn’t get to grow up and pull away from her and bitch about her with my friends and confront her about the things I’d wished she’d done differently and then get older and understand that she had done the best she could and realize that what she had done was pretty damn good and take her fully back into my arms again. Her death had obliterated that. It had obliterated me. It had cut me short at the very height of my youthful arrogance. It had forced me to instantly grow up and forgive her every motherly fault at the same time that it kept me forever a child, my life both ended and begun in that premature place where we’d left off. She was my mother, but I was motherless. I was trapped by her, but utterly alone. She would always be the empty bowl that no one could full. I’d have to fill it myself again and again and again.”

— Cheryl Strayed, “Wild: From Lost to Found on the Pacific Crest Trail.”

Back in February, my blog post “Don’t Disappear from the Pictures,” which I had cross-posted on The Huffington Post, was well received.  Much to my surprise, it received thousands of likes, and the blog was shared more than 1,800 times.  When my friend, Julia, read it, she messaged me on Facebook, and highly recommended I read the book “Wild.”  She promised I would love it, and I would relate to it 100 percent.  She then assigned it to me as a book report and get back to her in two weeks.

Yeah. . . it took me three months to finish, though that had nothing to do with the book itself.  Sorry Julia!

Cheryl Strayed is an amazing writer.  Hands-down, this is the best memoir I have ever read.  (Right now, I’m reading “Orange is the New Black,” and I’m noticing a difference between showing, not telling – Piper Kerman tells and Cheryl Strayed shows.)  I highly recommend everyone should read this, especially if you’ve experienced a profound loss in your life.  Even though Cheryl’s situation was different than mine – her mother died of cancer when she was in her early 20s, and mine died of cancer when I was only 7 – the emotions and the ache for your mother when you need her the most is the same.  I related to her anguish, sorrow and determination to figure out her life without her mother in it.

When I came across the above passage, I re-read it several times, just letting the words soak in.  “She would always be the empty bowl that no one could fill.  I’d have to fill it myself again and again and again.”   The loss of my mother has defined me – the motherless girl.  She died at an age where I never fought with her.   I didn’t rebel against her or done any other teenage-angst daughter stuff that mothers endure.  Since she died when I was seven years old, she was frozen in time as the Ideal Mother.  She was my fantasized “what if” world.  When I reached adulthood, I began viewing her as a real person, someone who was far from perfect but loved her family very much.

When I reached adulthood, the loss of my mother defined me again – I had to get annual screenings for the same disease that killed her.   I didn’t have her guidance or knowledge as I navigated breast cancer myself.  I never felt as alone or as empty as I did during chemotherapy.   I had to keep filling my bowl, so speak, by befriending others going through this as well.  I didn’t have her, but I wasn’t alone.

“Wild”  inspired me.  Her story made me even more determined to work on my story, and make it count.  To show, not tell.   To pour my heart into my story, just like Cheryl Strayed did.