Speech for Brandeis University Relay for Life 2015

This year, I was honored to not only be the co-captain of the Brandeis Alumni Relay for Life team but also was asked to give the survivor speech. In front of an audience of seven hundred, primarily students between the ages of 18 and 22, I told my story.

But survivor stories are so often boring. My story bores me most days. I agonized for weeks about how to make my timeline clear while also leaving a message behind. So often, I think “What if?” What if I pushed my doctors more when given so many diagnoses that never addressed the issue? What if it was caught earlier? What if I hadn’t rolled in toxic sludge that one time? Many who have gone through life changing or life threatening illness have the same thoughts. We can’t change the past, but we can positively influence the future. If one student hears my words and risks seeming like a hypochondriac to reach a cancer diagnosis, I’ll have won.

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Posted in Events, Personal Stuff

When do we forget?

“A few years from now, this will all feel like a bad, surreal dream,” my oncologist told me at diagnosis, all whimsical bowties and seriousness.

August 12 came and went. There was no ceremony. In fact, I made it to the end of August before it occurred to me that I was on the other side of 3 years.  And I wonder, was it just a bad dream? Is this really something that happened to me?

Reminders are still stark. The port still juts out of my chest; a safety blanket in case of relapse. My body is riddled with scars from surgery and inability to heal following chemo. My lungs are my Achilles heel with the grip of bleomycin toxicity reminding me with every breath to never take respiration for granted.

But the fear is nowhere near its past frenzied height. Coughs are just a cough. I reach for a bottle of lotion rather than an emergency call to my oncologist when I develop itches. Back pain can be blamed on my rutted mattress and a lack of core strength. Everything is not cancer.

Yes, Virginia, there are a return to normal. A “new normal,” yes, but normal all the same.

Not even a year ago, this development seemed impossible. Whole entire days pass without thinking about illness. It was not all too long ago that I could not go an hour without feeling at least one 5 second panic attack.

One of the most common questions I am asked by other survivors is how long until cancer does not dominate your thoughts, dreams, and conversations? When do you stop fearing the quiet moments where cancer can take hold once again? There is no one answer. For me, it happened sometime between my year 2 cancerversary and flying to Israel for an early year 3 gift to myself.

It still sometimes hits me, so overwhelming that I feel like I am being smothered with wet blankets. A friend passes away. Whenever anyone suggest removing my port. A smell. A swollen lymph node (they do that, don’t you know). But they are more infrequent. My days are rarely interrupted beyond the point of redirection.

Whether you have just been diagnosed, are in the middle of treatment, struggling with PTSD following treatment, or the caregiver or supporter of someone who is, know that it gets better. Like all things worth achieving, it takes work and is a process. The intervening years are not easy. The difficulty of that “in between” time is part of why I have not kept this blog up as much as I would like after ending treatment. But I promise, you will see the sunlight again.

Posted in Survivorship

Cancer and the Single Woman

Cancer and the Single WomanWorking in your alma mater’s communications office has challenges. Do I separate my alumni exuberance for more polite professional enthusiasm? How much do I insert myself as an alum versus a staff member? Do I throw a funeral for my favorite cast-off mascot? Ehrm.. So when an upcoming alumni magazine carried a love theme, did I speak up with a story that needs telling?

That story is the shadowy world of dating with cancer. Sexuality is a hot button topic at survivorship conferences. Many doctors find the whole topic uncomfortable or secondary to their goal of making sure their patients live. But quality of life is important and more medical professionals are speaking up dating, sexuality, and fertility during and after cancer treatment.

The opportunity presented itself when the director of the magazine wondered out loud about finding a story from a young alum. After a lively debate in my mind about whether I wanted to be quite so self-serving, I pitched my story. Flash forward a few months and my first essay was published in the magazine with a circulation of over 30,000. #cancerlebrity indeed.

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Posted in Relationships, Social Media, Survivorship, Writing

Or: How I learned to stop worrying and love the Tweet

Dr.StrangeloveAnd it wasn’t even that hard!

Confession time. Twitter used to intimidate me.  140 characters is quite brief for my sheer verbosity and what if I did something wrong? I mean, don’t these things take planning? And why do all of these people keep tweeting food porn?

Then Google announced that they were retiring their Reader platform. With no immediate replacement to be found, Twitter threw open a window to the blogs that I followed, plus the added bonus off-the-cuff personality. So I focused on my own neglected Twitter account.  After 6 months of focusing on producing content, joining Tweetchats (more on that later), and attending my first higher ed social media conference, I can practically do an interpretive dance of sincerity. It’s not just a place to humblebrag dinner or your poolside cabana (though there is no lack of either in the Twitterverse), but the real value is Twitter’s direct connection with nationwide colleagues (and Ashton Kutcher), industry news, and a (often frustratingly) brief platform for personal branding.

Ever think about Tweeting but don’t know how to start or why you should?

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Posted in Social Media

Get out the hammer and nails, it’s redesign time

Two years in remission is approaching and I find myself having time to think – not about cancer – but about everything else. When I was a kid, I wanted a job where I could think. Today, I get to watch history unfold through 160 word blurbs on Twitter, connect with alumni history through Youtube, and chat with people from all over the world with a million different backgrounds across social media. And, most importantly, I get to THINK about how to connect all those dots to increase brand impact. 

So it’s time for a change.

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Posted in Personal Stuff, Social Media

Human genes cannot be patented – what does it mean?

On Thursday, June 13, the Supreme Court unanimously made the landmark decision to not allow individual human genes to be patented or held for profit, and the entire cancer and general e-patient community took a tentative sigh of relief. But what does it mean?

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The disease that shall not be named

Except for mine. My biggest tumor in my cancer’d armpit’s name is Voldemort. And, like Voldemort, it’s presence is gone but will always leave a gnarly mark.

 

More about the Health Activist Writer’s Month Challenge (#HAWMC) and wordless Wednesday can be found at WEGO Health. Join in!

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