legacy

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.

My grandmothers

In my life, I have had three grandmothers.  When friends my age talk about visiting their grandparents, I feel a slight twinge of jealously.  My last grandparent died when I was in my early 20s, just barely into adulthood.  I’ve been thinking about each of these women and the roles and impact they had on my life.

Grandma

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This is my father’s mother, who my brothers and I just called Grandma.  She died when I was in my early 20s, so I luckily I have more solid memories of her.  Grandma wasn’t a very emotional person.  I don’t remember her being  excited or angry or any extreme emotion.   Whenever we visited her, Grandma never sat down and ate with us.  She stayed in the kitchen, and she was ready if you needed seconds or more tea or water.

Grandma was always there for my brothers and I growing up.  She showed up to graduations, confirmations, weddings, whatever she could.  She sent birthday cards and Christmas cards.  Grandma was there.  When my mother died of metastatic breast cancer, Grandma came up and helped take care of my brothers and me.  While she was not an emotionally demonstrative woman, I always knew that she cared and loved us because she was there.  She is why I believe that if you care, you show up.  If it’s not in person, you call or send a card.  You show up.

Granny

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This was my mother’s mother, who my brothers and I called Granny.  She died of lung cancer when I was three, maybe four, years old.  I have two very faint memories of Granny.  I’m not even sure if they are memories, maybe snippets.  Granny was the only one who called me Lolly, and when she died, that nickname died with her.   The other thing I remember about Granny was her gravelly, low voice, which said to me, “Give me some sugar, Lolly.”  No lie, she is the reason why I never wanted to smoke or became a smoker.  Her voice scared me as a child, and that fear never left me in middle school and high school when my classmates began smoking in secret.

However, Granny wasn’t just a cautionary tale for me.   I’ve gone through old photos of her, Papa and my mother probably hundreds of time.  Plus, my father has  been a historian of my mother’s side of the family, and he’s told me so many stories of her and my mothers side of the family.  Granny comes across as stoic and proper, like she would have been that old-fashioned Southern stereotype you see and hear about.   Beautiful and strong – I bet nobody messed with her, like I know nobody messed with my mother.  (Maybe I’m like them both?)  A couple of years ago, my dad gave me a huge pile of letters that Granny wrote to my mother and father in the 1970s.  It’s so neat that I have tangible evidence of my grandmother’s love for her daughter.

Nana

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Nana, my stepmother’s mother, was an amazing woman.  Hands down, the absolute best.  I couldn’t, nor would I ever, say a bad thing about this woman.  When Nana came to visit, she would ask everyone what their favorite meal and/or dessert was, and then she would make it for you.  Whenever I’ve talked about Nana in recent years, I’ve joked that when Nana came to town, everyone in the house would gain about five pounds.  I used to spend hours in the kitchen with her as she baked dozens of cookies, and she would talk about whatever you wanted.  Nana was silly and joked about silly things, calling her bra “an over the shoulder boulder holder.”  Nana would also listen to you, and you always knew she cared.

The thing I loved most about Nana was that I never felt like a step-granddaughter to her, just family.  She made me feel included and important.  When she passed away, the world lost a wonderful light.  Whenever I bake cookies or cupcakes in my kitchen, I think back to the time I spent with her in the kitchen.  I like to think she’s in the kitchen with me, smiling and telling stories.

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I am very proud of the fact that I come from a line of strong and loyal women, like Grandma and Granny.  I also feel blessed that Nana considered me a part of her family.   Like I feel about my mother, I hope that I am making these three amazing women proud.