Setting Boundaries –

Following the confirmation of my cancer diagnosis, as my initial shock softened into acceptance and a new reality, I realized that I needed to renegotiate various relationship boundaries.

It started with my family.  I had to open the aperture to allow for more information and transparency than I was typically used to sharing.

With my doctors, I had to learn a whole new language and questioning strategy to remain aware and informed on how my diagnosis would impact me in ways ranging from trivial to significant.

Since I wanted to keep work a “cancer-free” zone, I had to make choices about sharing the status of my diagnosis and treatment. I hoped that my co-workers would respect my decision to keep this information contained within a small circle.

But ironically, the relationship that required the most thought and modification was not with a person.

It was with a search engine.

Being diagnosed with cancer forced me to reevaluate my relationship status with Google.

In the early days of email, when forwarding jokes and inappropriate content was deemed an acceptable form of communication, my annoyance over this practice was immediately suspended when I saw an email that had “You know you are a child of the 80s” in the subject line.

An instant portal into the past, the email would list all the arcane items whose importance at the time was now outweighed by their irrelevance to the present.

Rotary phones, legwarmers, shoulder pads, blue eyeshadow (if you lived in New Jersey) and fondue pots all had their day.

Remember encyclopedias?

If you are a child of the 80s, there was nothing better than an encyclopedia.

It was the source of everything.  A Magic 8-Ball in book form, neatly alphabetized for quick reference.

Whether you needed to know something on a specific US president, ocean plant life or Greek mythology, an encyclopedia had all the answers – or at least the answers that were available at the time the tome was printed.

Then came Google.

Instead of trudging to the public library every time I needed an answer to a pressing question, I could remain in my yoga pants masquerading as pajamas and receive this information instantly.

When I struggled to remember the name of an actor in a movie I was watching, needed market data to support a campaign I was developing or find the toy of the moment that my nieces had their hearts set on, I was all set.

So now, in the throes of being completely blindsided by cancer, you would think that I could deploy my prolific Google search skills toward helping me navigate the intricacies of my medical diagnosis.

Unfortunately, this didn’t translate for me.

Why?

Because sometimes Google is a mean girl.

In the early days of my cancer diagnosis, Google was definitely not my friend.  For some people, I can see how having cancer in the age of instant information would be an incredible source of comfort and support.  This was not the case for me for several reasons.

Reason #1: Too Much Information

Even though my cancer searches were relegated to the very rare cancer I had, they yielded enormous amounts of information.  Way too much information, which ranged from precise medical studies to patient stories posted on message boards.

I struggled with neither having the intellectual capacity to understand the medical content, nor the emotional ability to refrain from personalizing the patient stories to my situation.

Having an abundance of information at my fingertips was actually making me feel less prepared and capable of forming a reasoned and balanced perspective on my diagnosis and treatment.

Reason #2: Information is Subjective

When reading the stories or information shared by patients who were battling the same type of cancer, even when it elicited an emotional response, there was a voice in the back of my head reminding me that the information was unique to the individual and that their perspective, while helpful, was skewed by their personal feelings.

However, in my initial Google searches, I made the incorrect assumption that medical studies were devoid of personal bias.  Doctors who have spent their careers researching specific forms of cancer or drug companies who have spent millions (or billions) of dollars to develop a new drug are going to present facts and data in a manner that supports their arguments.  This doesn’t mean that the facts and data are not true. However, it also doesn’t mean that they are free from subjective opinions and that they matched up with my best interests.

Reason #3: Information is Not Always Current, Helpful or True

When I found myself having a severe emotional reaction to information I found online, I would ask myself three questions to help calm myself down.

Is the information current?  Is it helpful?  Is it true?

Back in my encyclopedia days, I could always count on the latter two, knowing that if the text told me that Jimmy Carter was president and it was 1982, the book was not trying to deceive me.  I was merely stuck in the information gap created by the long lead time needed to update and print new editions.

In contrast, Google is the epitome of current – to the point in which there is very little time between having a thought and its instant representation online.  But when it comes to whether the information is helpful or true, many times I longed for the encyclopedia.

On the days when I was emotionally fragile, reading someone’s opinion that I was “totally screwed” was not helpful.  Conversely, on the days when I was in deep analytical research mode, reading that I could cure my cancer through meditation and drinking more green tea was a straight line to infuriation.

All these challenges led me to a moment where I considered breaking up with Google, at least while I was dealing with my diagnosis.

It’s not you, it’s me. 

But I didn’t walk away.  At least not completely.

Without question, having as much information one can about their health and medical options is vitally important when navigating a health crisis.  Intuitively, I knew this and therefore couldn’t see the positive in totally shutting myself off to information received online.

My solution was to delegate information gathering and vetting.  My sister Sharon became my Vice President of Research and served as the human equivalent of SafeSearch.  Sharon decided what to share with me, using the “is it current, helpful and true” criteria.

This approach was a game changer in how I prepared for treatment, because it ensured that the information I received was in my best medical and emotional interests.

As my treatments progressed and I felt stronger and more in control, I slowly reengaged with Google on new terms, which were based on maintaining clear boundaries and emotional distance.

But to this day, I still find that consciously putting myself in the position of “not knowing” sometimes is the smartest (and kindest) path to take.

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