A little factoid for you:
Approximately 70,000 young people between the ages of 15-39 are diagnosed with cancer in the U.S. each year.
Even before I was diagnosed with Hodgkin’s Lymphoma, Aura and I were online searching for any scrap of knowledge that might begin to explain what the hell was going on with my body. In between doctor’s visits our ad hoc Google search party became more and more certain that I had Hodgkin’s Lymphoma. I careened wildly from site to site. What else was I gonna do? The internet was an abandoned Wal-Mart parking lot and I was a teenager behind the wheel for the very first time. I innately offer something of a lead foot to much of life, and this would be no different. Finding good information about your cancer is a bit time sensitive.
I started with sites offering medical information, and quickly realized that hundreds of sites have basically the same two or three paragraph summary of the disease and how it is treated. Armed with insufficient Hodgkin’s Cliff’s Notes, I quickly shifted to searching for actual survivors talking/writing about their experiences with cancer. The search was surprisingly difficult. The chat rooms were vast and saturated with crazies. I felt like I was in a Wal-Mart parking lot—one of the last places in the world I would want to be.
Three years later, I do believe it’s easier to find your way on the internet, but I also believe that even Lance Armstrong became a teenager behind the wheel when he was diagnosed.
It is so important to get good information to the 70,000—yes 70,000—young adults who will be shocked by a cancer diagnosis this year. It’s one of the main reasons Hoechemo exists.
To that end, I am proud to have participated in a Google+ Hangout hosted by Dana-Farber Cancer Institute’s Young Adult Program. YAP Director Karen Fasciano joined a panel of inspirational young adult cancer survivors and advocates—who have committed themselves to sharing their journey with cancer—for a video discussion on the unique challenges facing young adults with cancer.
Please enjoy. If you know someone who has recently been diagnosed with cancer, please send this discussion along:
A few more resources:
A fantastic array of bloggers write about young adult cancer for the Huffington Post’s Generation Why:
Here’s a list of cancer voices I’ve compiled on Twitter:
If you’re on Twitter and you haven’t used ‘lists’…get on it. Great way to curate information.
Here’s Northwestern Memorial’s Program:
Here’s Memorial Sloan Kettering’s Programs:
If you read this and you know of other great resources for cancer survivors, please feel free to comment.
And please, please do yourself the favor of checking out the work of all the beautiful participants of this hangout…
The event was hosted by Dana-Farber’s Young Adult Cancer Program. @DanaFarberYAP
Associate Director of Interactive Communications
Dana-Farber Cancer Institute
Karen Fasciano, PsyD
Dana-Farber Cancer Institute
Director of YAP@DFCI
Breast Cancer, Diagnosed at Age 32
Hodgkin’s Lymphoma, Diagnosed at Age 23
Breast Cancer, Diagnosed at Age 33
Director of Corporate Engagement, Livestrong Foundation
Gastric Cancer, Diagnosed at Age 30
Almost three years after I initially discovered this cupcake truck for a cause hoechemo.com/post/9415886286/inspired-cupcakes-for-courage, I finally got to try one for myself. I recommend the pink velvet. They even hooked me up with a free survivor cupcake! They park by Northwestern Memorial most Wednesdays. Check em out! They’re on twitter giving updates on their whereabouts @CourageousCakes and they’re on facebook too.
Today is my 3rd Cancerversary. Two years ago I was receiving radiation and prepping for my first transplant. One year ago I was prepping for my 2nd transplant. Today, I am in Seaside, California taking my first ever beach run with Aura. I am full of gratitude and sand.
Last July, after my allogeneic stem cell transplant, I immediately began to exercise. I exercised by occasionally sitting up, by chewing and swallowing food, and by going to the bathroom in a toilet that was seemingly across the island of Manhattan from my bed. If possible, I would have taken a taxi to get there.
Each day in the hospital I would force myself to stand up, slipper up, gown up, mask up, and walk a few laps on the transplant floor—just me, my girl and my IV pole. Inevitably, I would return to my room entirely depleted.
This May 8—three workouts in and still frost-bitten by a harsh Chicago winter—I looked over at my personal trainer, Shawn, and said, “So I signed up for Northwestern’s Cancer Survivors’ 5k on June 1st. You think I’ll be ready?” Her eyes widened. Her mouth was vaguely ajar. With a slight tilt of her head she said, “Um…”.
On June 1, surrounded by friends and family, on the 319th day since transplant, Aura and I crossed the finish line of my first 5k with the modest time of 32:59.
Did I say modest? I meant miraculous.
I smell a 10k coming on…
Here’s to Shawn Howd at First Step Fitness for making fun of me, keeping me on track and making working out something I now enjoy. If you’ve had cancer, live in Chicago and want to get back in shape, I’ll help you get ahold of her. She’s fantastic, and she knows our type.
And here’s to all of Aura and I’s friends and family who joined us on race day.
This beautiful (debatable) photo was taken on June 22, 2011, the morning of my lymph node biopsy. Saying goodbye to a hardworking lymph node that had gone rogue. I was diagnosed 5 days later on June 27.
To my hundreds of incredible nurses,
I want to apologize for not remembering.
My gratitude for your knowledge, kindness and care knows no bounds. My dislike of your design aesthetic also knows no bounds…
This year I promise to do my part to fill out comment cards on your bad coworkers. Maybe together, we can at least get them transferred to another floor.
Hannibal Buress on Cancer Walks:
I don’t believe in cancer walks. Well, I believe in them because they exist but I’d rather just give money straight up and save my Saturday afternoon. I can make my own t-shirt, that’s not incentive. Plus I don’t think cancer responds to how far people walk. I don’t think cancer’s sitting at home, ‘What? How many people walked how far? How many people walked how far wearing the same shirt? That’s crazy! I’m out of here! Remission.’
This National Cancer Survivor’s Day, we (Aura Brickler and Bret Hoekema) request the pleasure of your company as I complete the move from hospital bed to 5k. You are cordially invited to slather on the SPF 75 and gasp, pant and sweat your way to 5k. We’re not raising money, but we will be raising Cain. This run (or walk) is a chance to gather with friends and family—and celebrate the grit and immoderate spirit of cancer survivors everywhere.
Here’s the details:
Held on National Cancer Survivors Day, the Lurie Cancer Center’s Cancer Survivors’ Celebration Walk & 5K brings cancer survivors, families, and friends together with the physicians, scientists, and health professionals who support them for a meaningful, memorable morning filled with family-friendly activities. No pledges required.
21st Annual Cancer Survivors’ Walk & 5k
Sunday June 1, 2014
National Cancer Survivor’s Day
5k at 815
Walk at 830
Learn more, sign up or cover a cancer patient’s entry fee: http://cancer.northwestern.edu/walk/index.cfm
There you have it. I’m not much of a runner. It doesn’t run in my family. I’ve got jeans in my genes. Come out this National Cancer Survivor’s Day and see for yourself just how uncomfortable I am in running shorts.
A proposal for a day of the race activity/contest sponsored by Gillette:
1. Line up a bunch of runners
2. Guess whether the runners shaved their legs for the 5k or if they just finished chemotherapy.
3. Win a disposable razor.
"Awareness is learning to keep yourself company. And then learn to be more compassionate company, as if you were somebody you are fond of and wish to encourage."
–Geneen Roth via Anne Lamott in Bird by Bird: Some Instructions on Writing and Life, pg 31
If you haven’t read it, pick it up.
video by Public Record
Originally posted by @amy_augustine
She blogs at countingupfromzero.com
*** Official Selection SXSW Film Festival ***
A hybrid music video/documentary for the highly-emotional and wholly original debut single BRIGHTON by Alagoas (alagoas.us).
It is an uplifting love story featuring our friends Lincoln Fishman and Hilary Costa. They’re a young couple who abandon their burgeoning careers in New York in order to start a farm and build a life for themselves in community-supported agriculture. But just as they begin to hit their stride, the grim onset of cancer threatens to topple their dream.
The video is comprised entirely of footage from our work-in-progress documentary WE LIVE OUTSIDE.
More about Lincoln and Hilary: sawyerfarm.com
More about the filmmakers: thepublicrecord.tv
Directed and photographed by Jeremiah Zagar
Edited by Khyber Jones
Additional photography by Adam Saewitz, Chris Keener, Hilary Costa & Yael Bridge
Timelapse photography by Digital Farm Collective & Dave Le Creative
Produced by Jeremy Yaches