A year ago, I could not have imagined the good that breast cancer would bring into my life.  At that time, it ALL felt bad.  I didn’t know how I would get through the coming months, and I couldn’t imagine the big things God had in store for me — the doors He was opening.

Almost exactly a year later, I found myself here…

20150417_200240…five minutes from NYC.  At a blog conference.  On someone else’s dime.  Whaaaaaat?

When I got the official invite from Janssen a couple of months ago, I thought that it might be some sort of scam.  What could they want from me?  But as it turns out, it wasn’t a joke.  This conference was the brainchild of some very passionate people.

HealtheVoicesLogo

I have to say that I was pretty nervous that first night as I walked into a cocktail reception overlooking Manhattan by myself.  Afterall, I’ve spent the better part of the last five years wiping butts and trying to get people to go to sleep — both at home and at work as a night nurse — and my blog is not professional.  But as it turns out, one coffee + three cocktails is the recipe to loosen me up.  It’s also the recipe to make me pee.

The welcome dinner setup kind of felt like the high school cafeteria all over again — but in a much more chronically ill, hilariously somber sort of way.  See, once I sat down in my assigned seat, I noticed that everyone at my table was a breast cancer blogger.  I looked around, and it was clear.  There was the diabetes table, the rheumatoid arthritis table, the HIV table, the Crohn’s/colitis table and so on.  People were swapping surgical stories, comparing psoriasis patches, and talking common medications.  As if on cue, my table compared ports.

We were grouped by disease, and I don’t know why but I LOVED IT.  It was the funniest possible way to start this conference.  And I’m assuming my table was part of the cooler crowd, though, because BOOBS, you know?

"On Wednesdays, we wear pink!"  Except we're really effing OVER pink...
“On Wednesdays, we wear pink!” Except we’re really effing OVER pink…

I mean, it was also really nice.  My breast cancer girls are where it’s at, and it’s easier to get comfortable with people you don’t know if you have something in common like, uhh, cancer.  But I also felt the weight of being grouped together like this.

In an introduction speech, Ann Silberman’s blog Breast Cancer? But Doctor….I hate pink! was mentioned for its wit.  The speaker read aloud Ann’s tagline, “Terminal cancer can be funny. Just not for very long,” and it was met with an immediate laugh that swiftly turned into a collective “awwww.”  You know the sound.

And when I first spoke with Jen from Booby and the Beast, she asked if I had been stage four from the beginning.

“Oh, no!” I refuted.  “Me?  No.  No, I was only a stage one,” I said a little too firmly and with one too many “no’s.”

A few minutes later, I learned that she was stage four from the beginning.  (She looked so healthy!  Looks can be deceiving — which I learned again and again that weekend — and also, I can be an idiot.)  And her beginning looked a lot like my beginning.  Diagnosed at 32 while nursing a baby with no family history to speak of.  Except I was diagnosed at stage one and she at a stage four.

I laid in bed that night and couldn’t stop thinking about her, about Ann and Vickie and Kathy — who are also “terminal” (Read this to see why that might not be the best terminology.)  I was the only non-metser there.  I couldn’t reconcile my own story against Jen’s especially.  I felt guilty.  I felt lucky.  I felt confused.

img_gs113719861_04182015_113719861From left to right: Kathy-Ellen Kups, RN, Life with Breast Cancer; Jen Campisano, Booby and the Beast; Vickie Young Wen, I Want More Than a Pink Ribbon; Ann Silberman, Breast Cancer? But Doctor…I Hate Pink; and me.

I saw her the next day.

“Hey, I was thinking about you a lot last night.”  <—because I’m a weirdo.

“Yeah, me too.  I read some of your blog.  Your last one was really good.”

“Thanks!  I read some of yours too.  It just seems so… I can’t understand…  I feel bad,” I trail off.

“Me too,” she said softly.  “I know that I’m basically your worst nightmare.”

I don’t remember what I said after that, but it wasn’t much because we had places to go.

My worst nightmare though?  No.  But YES!  But nooooooooooo.  Well, yesssss, kind of.  But not you personally, no.  Gah.

The event made me confront some things that I didn’t really want to confront, and to be honest — and to my surprise — it was good for me (after a little processing of my feelings because I definitely did think, at one point, that I had found a new cancerous lump in my armpit that weekend).

The point of this conference, though, was not just to let us hob knob and such.  It was to empower online health advocates.  (Did you know that I was a health advocate?  I did not.)  They wanted to give us some tools to help us make a bigger difference with our crafts.  We listened to brilliant speeches by inspiring people, like Dr. Zubin Damania “ZDoggMD” (who is also hilarious).  We attended sessions on bloggy stuff and had discussions about the legal side of things and social media analytics and measurement.  We got to talk shop with other bloggers.

While I learned a lot of really cool things, the biggest takeaway for me was something we talked about in terms of the power of “me too.”  It was something that was almost palpable at the conference.  It’s something we all long for, and it’s what a lot of really great friendships are built on.  It’s a sense of validation.

Just yesterday at the park, I saw a plaque on a picnic table that I read as ‘John Stamos’ at first glance.  It made me laugh and start talking to my friend about my excitement over ‘Fuller House’ (YOU GUYS!).  Then our other friend showed up and said the exact. same. things. based on the same misreading of the plaque.

“ME TOO!”  Hahaha.  “I’m pretty sure that’s why we’re friends!”

Just think about how excited you get when you find out someone loves Harry Potter as much as you do.  Or had the same pink and purple popple in 1989.  Or, like, has a scar in the same place on their knee as you.  We love even the smallest of commonalities.  Instant bonds are formed among parents of small children, Hanson fans (ahem), runners, motorcycle riders, vegans.

You see someone on the road in the same car as you.  Instant connection.

Someone else has their quilts on a rotation schedule so each blanket has its time to shine and none of them gets their feelings hurt?  YES!  It feels so good to your soul!

When I was in a room with dozens of other people who UNDERSTOOD the weight and effects of illness (cancer or not), it felt great, and more importantly, I realized why my blog is important.

Up until that point, I didn’t quite understand why I was there.  Some of these people were doing really great things with their websites, and here I am over here just trying to make myself laugh.  To be honest, I do do (doo doo!) this mostly for selfish reasons.

I started this blog because I couldn’t find one that didn’t scare me in the beginning.  I started it because I was tired of repeating myself.  I couldn’t keep up with the constant flood of texts and calls from my friends and family.  So damnit, here it is.  Here’s how I’m doing!  (And also, you know, thanks for caring.)  I started it to stop my head from spinning — to nail some of my thoughts down.  It became part of my therapy.

What I realized at the conference is that storytelling is important too.  People (who are not my dad and my best friend) are now coming here to find something — the me too.

Just the other day, I got this comment:

“Thank you for your blog and honesty. I am 6 out of 16 treatments through this mess (surgery and radiation to follow) and really needed to find a blog written by somebody not stage IV and a mother in her 30s. I read all of your posts either laughing, crying, nodding along or all three combined. I’m glad to read you’re doing well.”

That’s a “me too” that goes a little deeper than a shared love of Scattergories.  And not just on her part.  Every time I get a similar comment or email, I feel connected.  I feel stronger.  I feel less alone.  It makes me realize that what I’m doing by telling my story is important.  It’s important for her and for me.  So I guess that’s what I’m doing here — calling out into the internet for my people (re: cancer allies, people who like to laugh, and anyone who just knows that I’m generally awesome) to join me at this lunch table…err, blog.

 

Disclosure: Janssen paid for my travel expenses for the summit. All thoughts and opinions expressed here are, as always, my own.

17 comments on “The Power of Me Too.”

  1. I know exactly what you mean when you speak of validation. I can’t imagine being the only one going through breast cancer, although, I wish none of us were going through it.

    Yes, telling your story is extremely important and I am glad you are sharing yours. At some point I too felt mine didn’t matter, but it does. We all matter because someone is always looking for a connection, for help, for a way not to feel left out.

    Funny, before I started blogging, I was like “who the heck has no kids in their 30’s and facing cancer?” This is one of the most important things I am facing right now, the fact that I want a child and I may not be able to because of my cancer. I would love to find someone who had a baby after cancer so I started blogging. Of course, there is more to my story.

    I wish I would have known about this conference. I would have loved to see you all. I am from NY so I was very close to all the action.

    Glad you got to go and enjoyed the company of those women who GET IT and understand us.

    Hugs

    • Thank you and yes, we all have a story worth sharing, and I know your blog is helping many too.

      New Jersey and NY were beautiful, but unfortunately there wasn’t really any time for exploring. I would love to go back someday!

  2. I LOVE THIS! This is an excellent post, very well written and says so much of what I have been thinking about as I work on my own recap from HealtheVoices. Thank you so much for sharing your thoughts – both here and in person. It was great to meet you, again, and I hope we can keep in touch.

  3. I’m so glad I discovered your blog! What an authentic, excellent post! It’s wonderful that you made some great friends at the conference and felt that instant camaraderie. Keep writing! You are inspirational.

  4. Great post! So glad I found your blog today. Thanks for sharing your perspective and for all the laughs!

    – Stage 3 Breast Cancer Surivor & mom in her 30’s 🙂 …soon to be 40’s.. 🙂

  5. oh man don’t ya hate when you discover a spelling error RIGHT AFTER you hit the COMMENT button?!

    so yeah I’m a Stage 3 Breast Cancer SURVIVOR.not Surivor 😉 gosh darn where is spell check when ya need it?!

  6. ’m a former bodybuilder dx w/ non invasive Ductal Carcinoma (breast cancer). I had a lumpectomy, radiation chemo and now adjuvant therapy. It has been 10 months since I finished chemo. I am a psychotherapist and global mental health trainer and treatment provider of stress, anxiety, depression and panic. I live what I love and love what I do. But all that changed a year ago with my dx. I won my first bodybuilding competition in 2013 ans tried to do my next one in 2014 and then I was dx. My whole life changed. I lost a lot more than my best friend my body. I lost my mom, my dad and a lot of my lively hood. The thing I thought I knew best, my own body threw me a curve ball and I have not been able to find an new goal. I need support from a community that understands a fraction of what i’m going through.

Leave a Reply

Your email address will not be published.