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Good night, Jody.
By: Alicia
In:Jody
Tags:
May 18, 2016

It started with a tweet.  Cancer survivorship was the unifying force.  In 2009, Jody Schoger and I first connected while participating in Livestrong’s first major social media campaign.  The campaign was simple: send out a tweet with the hashtag #BeatCancer and tell the world how you’d crush cancer. #BeatCancer made the rounds on twitter, and through luck and a bit of serendipity, our paths crossed.

Screenshot 2016-05-18 14.33.34It was a tweet that launched a friendship and eventually a twitter chat. Jody lived in Texas and I’m based in Boston.  Without Twitter, it’s almost a certain guarantee that we would have never crossed paths.  Thankfully, we did.

We spent long hours on the phone, chatting about our cancer experiences and shared vision that cancer survivors deserved better. Better ways to connect with each other, easier access to the best clinical research, and a way to connect with leading advocates blazing a trail for the newly diagnosed.  The cancer world always needs sherpas and guides, and Jody was leading the way and teaching all those around her.  I was lucky to learn from one of the best.

Jody always treated me a like a kid sister and watched over me from afar.  When I faced surgery in 2010, she reached out to my husband and all my Boston friends to make sure they took good care of me.  Little care packages and letters were always waiting for me, helping me through that time.  And occasionally, she’d tweet out “Good night moon” to help me get to sleep [I can’t help it, it’s my favorite] on those lonely nights in the hospital.

good night jody

When I was hospitalized with pneumonia in 2011, Jody reached out to the Boston crew again – and visitor after visitor arrived at the hospital with one simple refrain: “Jody sent me!”

Twitter was always a foundation in our friendship. We were twitter friends, twitter BFFs as Jody would say. We watched how other patients connected via twitter and facebook and were fascinated by the possibilities of bringing more patients together in wide ranging conversations. We participated in the Health Care Social Media chat, founded by Dana Lewis in 2009.

Screenshot 2016-05-16 23.00.07

We quickly realized we found a new, engaging community to learn from and collaborate with other ePatient Leaders.  In the Summer of 2011, we were ready to launch our own chat.  Jody announced the kick off for the first chat hosted on July 4, 2011.

Screenshot 2016-05-16 23.54.04

Why July 4th?  We figured everyone would be paying attention to fireworks and not twitter, so if #BCSM fell flat, we had a good excuse.  Except, it never fell flat.  Dr. Deanna Attai joined us the following week, and the #BCSM trio of moderators has been running in full force ever since.

Screenshot 2016-05-17 15.06.29

254 Monday night chats since the launch. 1,780 days of crushing cancer through advocacy as a small, but mighty team of three at the helm and thousands of active participants in the #BCSM community.

Until today.

Our backgrounds were so very different, but we were always drawn to advocacy. I’m an engineer through and through, Jody had the writing chops, public relations and marketing background, and Deanna, the surgeon, provides the medical oversight, infrastructure, and community support.  It’s a dream team of  cancer advocates.  We were on a roll. #BCSM was growing into a force.  Interviews in USA Today, and then Forbesmultiple appearances at South by SouthWest, and presentations at conferences all over the US.

Dr. Deanna Attai, Alicia Staley, and Jody Schoger

Dr. Deanna Attai, Alicia Staley, and Jody Schoger

Jody was always trying to protect me, shield me from the realities of cancer, trying to show me that life as a cancer survivor can be a rich tapestry of experiences and heart-achingly beautiful moments.  But then the call came. She called to let me know her cancer returned after 15 years.  She was stunned, I was stunned, but she used this as a teaching moment:  “Don’t worry, kid.  I know this routine, we’ll get through this.”   Many months later she admitted she didn’t want to call me to break this news, she didn’t want to upset me.  That was always Jody’s nature; protect and care.  Deanna has been a rock of support for Jody and for me.  Deanna has stepped up to really help lead and grow the #BCSM community, just as Jody had hoped.

As  Jody declined over the past few weeks, I had the chance to visit her in April at her home in Texas.  It was so good to see her but so hard to reconcile the person I saw with the Jody I so desperately wanted to see shine through again.  She was frail, but determined.  The word hospice didn’t come up until well into the 2nd hour of our visit.  We both resisted saying the word, thinking maybe we could just ignore this “blip in the radar.”  As she began to tire as the afternoon wore on, she finally said those words, “You know, I’m starting hospice.”  Yes, I knew.  I got up from the couch, went over, and sat down next to her and gave her a gentle hug. We cried for just a moment and quickly dried our eyes.  She was focused and hopeful that perhaps hospice would be a tune up, a respite of sorts for a few weeks.  She was still hopeful that she could get stronger.  I’m not sure if she actually believed it, but she certainly wanted me to believe.  Always protective, even to the end.

When it came time to leave, she insisted on walking me to the door and down the driveway.  I knew this would be a long walk for her, but stubborn as she was, there was no stopping her.  She walked with me, one arm around mine, another hand on her cane.  We hobbled out and took in the warm, humid Texas air for a brief moment.  “I bet they don’t have air like this in Boston,” Jody nodded to me.  “I love you, kid.”   I choked back a few tears and could barely speak the words, “I love you too, Jody.”  She squeezed my arm, and pulled me in close.  “Now listen, you know what needs to be done to for #BCSM.  It’s up to you to take care of them now.”

Yes, Jody, #BCSM will live on, and we will work to honor your memory with every chat. You can count on us.  Good night, moon.  Good night, Jody. God Bless.

“For I am now ready to be offered, and the time of my departure is at hand. I have fought a good fight, I have finished my course, I have kept the faith: Henceforth there is laid up for me a crown of righteousness, which the Lord, the righteous judge, shall give me at that day: and not to me only, but unto all them also that love his appearing.” 2 Timothy 4:6-7

Jody’s memorial service will take place on Saturday, May 28th 2016 at 2:00pm CT at The Woodlands Community Presbyterian Church.

In lieu of flowers, the family requests that donations in Jody’s name be directed to:
The Woodlands Community Presbyterian Church for Mission Work

The Advanced Breast Cancer Center of Excellence (ABC COE) at
The University of Texas M.D. Anderson Cancer Center
P.O. Box 4486
Houston, TX 77210-4486

Please include that the gift is in memory of Sarah Schoger

Website: www.mdanderson.org/tributes or www.mdanderson.org/gifts, When using the website please select the Give in Memory tab and then select Fund Designated by Family (FDF) by checking the box that says I would like to choose where my donation goes. If you need any assistance or would like for us to process the donation on your behalf please call 713-792-3450 or 1-800-525-5841.

 

Comments

Angelique L'Amour

Date: 18 May, 2016

so sorry for your loss--and our loss--I am new to #BCSM but not new to cancer (6.5 Years cancer free) thank you for welcoming me to the fold a few months back. The friendships formed in this moment of cancer, cure, treament, etc are strong indeed.

Clair Stewart

Date: 18 May, 2016

Wow so powerful. Thank you so much for sharing this in your time of grief.

Maria

Date: 18 May, 2016

I can't stop crying - this touched a chord in my soul. May she be blessed forever and ever. Amen

Maria

Date: 18 May, 2016

I can't stop crying - this touched a chord in my soul. May she be blessed forever and ever. Amen

Nancy Cappello

Date: 18 May, 2016

Alicia - What a heartfelt tribute to a remarkable patient advocate. I cried as I read your blog..

heidi floyd

Date: 18 May, 2016

...she lifted me up, and often when i didn't think i could be lifted. Thank you, Alicia.

Jackie Fox

Date: 18 May, 2016

What a lovely tribute to Jody. Thank you so much for sharing this with us at such a difficult time.

Catherine Guthrie

Date: 18 May, 2016

What a beautiful tribute. Thank you for sharing.

Theresa Meyer

Date: 18 May, 2016

I am without words with the loss I feel once again! When will this stop? When will we find a cure for cancer? I wI'll miss Jody and her encouraging words ! Rest in Peace Jody! You have finished the race! You are living eternally with Our Lord forever more, no more cancer!

Katherine

Date: 18 May, 2016

So touching...

Jody Schoger — Her Words & Her Example

Date: 18 May, 2016

[…] to Jody from BCSM, the online breast cancer social media community she helped found on Twitter, Good Night, Jody Liz Szabo’s op-ed tribute in USA Today, Voices Gayle Sulik’s remembrance for the Breast […]

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