Guest contributor: Lisa Bonchek Adams

A Hidden Life

categories: Cocktail Hour

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[Editors’ note:  Today we repost a guest column from March 1, 2013, by Lisa Bonchek Adams.  We didn’t know Lisa Bonchek Adams personally, except we knew her well, both as a contributor to Bill and Dave’s and as an inspiring presence on Facebook and Twitter, not easy to be cynical about social media at a time like this: Lisa passed away the other day after an incredibly bold and brave battle with the various stages of breast cancer.  She was 45 years old.  Her blog chronicling her experience is a testament to her intelligence, clarity, and fighting spirit, and well worth looking at now, along with her Twitter feed, both of which will remain accessible.  Now, her two-year-old post–see her website for more.]

The first blog I ever followed was written by Leroy Sievers, an NPR commentator and journalist. Leroy wrote about his experience with colon cancer which ultimately killed him in 2008. For the two years before his death he wrote about his daily experience with the disease. When he was too ill to write or in the hospital, his wife, Laurie, would fill in with a brief update. She knew readers would worry. She knew that with stage IV cancer, an absence might signal Leroy’s death.

I followed Leroy’s blog religiously. My mother did too. We would talk on the phone and sometimes the conversation would turn to Leroy, a man we’d never met. “Did you see Leroy had a good week?” we might ask. We expressed despair and helplessness when his cancer metastasized to multiple locations in the last weeks of his life.

Some days I found it hard to read the posts. After Leroy died Laurie wrote about living without Leroy but it was never the same. I eventually unsubscribed from the list. I missed Leroy. That’s all there was to it.

Perhaps that first encounter with a blog helped me see how readers could still connect with someone they didn’t know who was sharing a life experience that may or may not have anything to do with their own.

I cared about Leroy. I had gone through treatment for cancer. I was scared of exactly what was happening to him. I could not help him beyond sending him an email of support frequently. But I could see that he gave me perspective and things to think about for the day, even if those things were difficult to look at.

I became a better person for reading that blog. I found myself looking at my life and cancer in a different way. Four years later I still remember Leroy and his influence on me.

I am now Leroy.

In October I found out that my breast cancer, originally diagnosed in late 2006, has metastasized to my bones and lymph nodes. Now my blog has become one where people can read about my daily living with cancer in a different way than it did back then.

As a 43-year-old mother of three, my life was already full. I didn’t have time for cancer when I was first diagnosed in 2006. Now I only worry that my cancer means I don’t have time.

I am treating my cancer but I cannot cure it. I have no way of knowing yet if I will be someone who responds well to treatments or not. So I proceed as if I think it will. I try to dispel myths along the way. Five years without a recurrence doesn’t necessarily mean you’re done with breast cancer. Cancer is not a gift. You’re not always given what you can handle. Things don’t always happen for a reason. You don’t always get what you deserve.

I try to go through my days right now as normally as I can. I go to the bus stop when I can. I help with homework. I get my children to the orthodontist and I stand in line at the post office (and roll my eyes at the wait).

But I lead a hidden life.

You would never know that I spend hours at my oncologists’ offices or that I enter “week on” and “week off” intervals into my iCal program. You might not see me deflect a hug from an acquaintance who doesn’t know there are two fractures in my ribs where cancer has taken up residence and made personal contact painful. You might compliment me on my beautiful hand-knit purse without having any earthly idea my chemo pills are inside.

I size up the people in the waiting room at the oncologists’ office. Are they old? Young? In treatment? Is that a wig? Not a wig?

They probably think I’m a follow-up patient. Healthy. They can’t tell I had a double mastectomy and chemotherapy five years ago. They don’t know I had my ovaries removed even though I was gene negative. They don’t know I’ve done everything I could have done to prevent the cancer from returning and still the cancer is here. I was told I had a single digit chance of it coming back like this. I am always the outlier.

But that’s okay. My blog is where I spill those truths. My blog is where I can be free. My blog is where I tell my story to those who want to listen and share my experience the way that Leroy shared with me.

I was paying attention, Leroy, as any good student does.

 

[Lisa Bonchek Adams is a 43 year old wife and mother of three children. She graduated from Franklin and Marshall College and holds a Masters degree in Sociology. Using lifelong insights gained as the daughter of a cardiothoracic surgeon father and a psychologist mother, she focuses her writing on the topics of grief and loss, cancer, and family. Originally diagnosed with stage 2 breast cancer in 2006, Lisa learned she has stage 4 breast cancer in October of 2012. She currently writes about living and parenting with incurable cancer on her website. She tweets as @adamslisa about the day-to-day aspects of the disease. (Guest head drawing by Paige Adams)]

 

 

 

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