A Board Member’s Story of CancerCon 2023

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I kissed the wife and kids goodbye and headed to the airport. Next stop, CancerCon 2023. I got into the Omni Atlanta at about 11pm, checked in, thanked the staff for hosting us and called it a night.

Excited but a little groggy from not getting a great sleep, I went to the gym to work up a sweat and get the blood moving. It was going to be a long few days. Thursday’s activities began with a Board retreat. This was an opportunity to discuss Board responsibilities, evaluate our performance over the past year and make plans for the future. Vision, mission, and fundraising were the words most used throughout the day.

That evening, a welcome reception was held for the participants. There was a sense of excitement, nervousness and uncertainty about what was to come. Nearly 2/3 of the participants were first-timers. While they would go through an orientation and a number of ice breakers, this was daunting for many of them, who were stepping out of their comfort zone. However, it would be worth it.

During the reception, I made the rounds. I introduced myself, made connections and tried to put participants at ease. I met with one mother, who had set goals in mind. Her cancer had returned and she was there ahead of another round of chemo. She didn’t know how things would work out, so she needed legal and estate planning advice for her kids. I was sure there’d be someone in attendance who could help, and I was determined to find out who that was.

The Board grabbed dinner (and a ferris wheel ride) afterwards. The retreat was more about practical service than bonding. However, discussing fears over Board membership, talking about our relationships with cancer and thinking about where we’d go in history if we had a time machine definitely helped with the bonding process. Those laughs and tears got us warmed up for an emotional roller coaster of a weekend.

Friday morning began with me staffing the merchandise booth with Nathea, the Operations Coordinator and new member of the staff. The merch booth provided a good opportunity to raise some funds for the organization, get to know some participants and see the excitement for the weekend first hand.

After a quick lunch in the hotel, it was time to officially kick off CancerCon with the opening session. Unfortunately, our CEO Alison came down with COVID right before the weekend. However, she has put together a great team that was able to handle things in her stead. Chelsea, the staff “captain” of CancerCon, gave an introduction and did a brilliant job “piloting the ship” during the entire weekend. The first session included an educational panel discussing genetic testing, with resources to understand genetic predispositions and tools for monitoring and catching things early. The keynote speaker was Erica Campbell, who survived cancer to seek her dream of becoming a runway model. Her message was about surviving and thriving, which she certainly has done.

The session was the perfect way to start the conference and led into break out sessions, where participants could seek out topics relevant to their journey. The sessions included 1) issues surrounding transitions in care, 2) toxic positivity, 3) caregiver burdens and 4) using humor to deal with these major issues. I attended the last one, officially entitled “LOLing through Cancer: Turning Your Story into Comedy.” Julia Johns, a hysterical and caring stand-up comedian, was spectacular. She’s a recent breast cancer survivor, who explained how to write a few types of jokes and supported our attempts at humor, no matter how dark some of the jokes were… remember we are at a cancer conference after all. Somehow, even not being able to control your own bowel movements while potty training a child can be funny, if viewed through a certain prism.

After meeting with some exhibitors who were supporting the community, there were community meetups for different communities within the AYA community: BIPOC, LGBTQ, professionals, metastatic cancer survivors and pediatric survivors. The Board used this time to head out to dinner at a great Mexican restaurant and discuss the day and the amazing spirit at CancerCon.

Then, it was on to comedy open mic, where participants in the comedy break out session (and anyone else) were able to get up on stage and practice in front of an extremely supportive crowd. Towards the end, a local comedian got up and discussed that he recently learned of his cancer diagnosis. It was a special moment. He was in shock from his diagnosis and we were the first people he told of his diagnosis…even before his own mother. He was clearly scared, but seemed to get some relief from speaking with such a strong, supportive and understanding crowd. Somehow, he was able to make light of his diagnosis, while still showing some vulnerabilities. The biggest laughs (and groans) came from talking about googling and TikToking his symptoms, which many in the audience could relate to.

Next up, karaoke. Matt, a staff member who’s been on the team for two months, was a big crowd pleaser. His energy made him a hit at the conference. He hosted the first timer sessions and was the MC for karaoke, so he became very popular with the crowd. Given the strong participation at the comedy open mic, I was going to sit out karaoke, but the energy of the group was addictive and I couldn’t miss out giving the crowd a little Bon Jovi. I got up there with two Cactus Cancer Society staff members (Laura and Chris) and we destroyed it…or so we think. However, the greatest moment came when one of the women ripped off her hat (worn all weekend) to confidently and unapologetically show off her bald head, during her karaoke song.

I didn’t get much sleep, tossing and turning for a variety of reasons – a lumpy bed, a couple beers, and a brain that kept thinking about the events of the day and my two years with Stupid Cancer. A typical phrase for those going through cancer is “I got this.” I realized that they do “got it.” However, the reason Stupid Cancer exists is for the moments they don’t “got it.” For those moments, we can provide the resources and community to help them through things.

The next morning began with another general session. This was spectacular, as Eddie, one of the more senior staff members, came out with pink shorts and a neon green tank top to advertise our fundraiser “Another Stupid Marathon.” He is hilarious and really got the crowd laughing and energized.

The general session also included a session on long-term survivorship, the risks of pre-existing conditions, the importance of strong record keeping and resources to get ahead of medical issues for which this community is at higher risk down the line.

Julia Johns took the stage next, performing a strong stand up routine that touched upon her cancer journey seen through a pretty funny filter. Her routine was entitled “A Tale of Two Titties.”

The session ended with a big personal honor, as I was given a Community Engagement award for my work with Stupid Cancer during the year. It was unexpected and I was completely flattered to hear their kind words and thoughts about my service for Stupid Cancer. I will cherish the award and accompanying thoughts.

At this point, I realized it was check-out time, so I missed sessions that included 1) navigating disparities in BIPOC care, 2) cancer in the bedroom, 3) identifying and dealing with triggers, and 4) planning ahead and documenting your wishes…all well attended and important topics for discussion.

We had lunch with exhibitors, where I made sure to meet with each partner/supporter, before heading to the next session. Because of the popularity of last year’s session, I made sure to attend the “I’m Fine: Men, Cancer and Cowboy Culture” session. Other sessions included a 1) journaling workshop, 2) talking with young adults about end of life, and 3) nutrition and exercise.

It’s important to note that there were mental health resources available throughout the weekend, given the heaviness of the conversations and the mental health issues associated with cancer for a number of different reasons.

Let’s just say that I was glad tissues were close by during the “Cowboy Culture” session. Cultural norms make it very difficult for men to seek out emotional support or for it to be granted. We are always just expected to suck it up and beat it, very difficult when you have a family that you support and are weakened from treatment and scared of losing it all. We heard a lot of difficult stories: One man, age 34, was speaking for the first time about his emotional journey…he was diagnosed at 16. A college student was embarrassed that he couldn’t even tell a trusted professor that he was headed to Atlanta for CancerCon. While tears were flowing, this session is a true example of the importance of the Stupid Cancer organization, as many people have an outlet and comfort zone to speak for the first time. It’s ok not to be ok.

It sounds like we were just in and out of sessions through the entire conference, but there was always ample time between sessions to connect with participants or take a breather after a tough session. However, the sessions were all well attended and participants were well engaged. At no point did I feel like things were dragging. The time really flew by, even in the legal session that I attended next. The other options related to 1) strategies and support for “chemo brain,” 2) cancer, disability and identity, and 3) self advocacy for BIPOC patients.

I attended a session entitled “Do I Need a Lawyer? Legal Implications of AYA Cancer.” Surprisingly, self advocacy limited the need to spend money on a lawyer. The presenter was knowledgeable and very engaging. She works for Triage Cancer, a not-for-profit, and got interested in this field given her need to help her parents in a similar situation. Remembering that woman in need of legal help at the welcome reception, I was able to hook her up with the presenter and later learned that she left the conference completely unburdened of her concerns.

The legal issue is an under appreciated burden for many AYA patients, who are starting their lives without the protections of their parents for the first time. There’s uncertainty on finances, insurance, fertility, and so many other issues that require legal and professional help. For someone who doesn’t always know if a simple blood test is included in my insurance plan, these issues must be daunting for these AYAs.

Unfortunately my time at CancerCon was coming to an end. The last event I attended was an open mic. There were tales of sadness, happiness, silver linings, hopelessness, hopefulness, and despair. The most moving was a woman who wrote a poem. She recently found out that she was diagnosed with cancer a fourth time. The disease has left her with physical impacts and disabilities. It was a moving poem, and I hope it was freeing for her. Again, the audience was very supportive, and I’m glad she had an environment where she felt free sharing her deep emotions out loud.

Well, that’s it. Another CancerCon in the books. I’ll end with a few comments that Sue, a fellow Board Member, sent that perfectly summarize the weekend.

“It’s hard to encapsulate what the CancerCon experience provides. Along with the honor of being surrounded by the spectrum of cancer and survivorship experience…

There is heartbreak in witnessing the struggles of the young and knowing the trajectory of their lives is forever shaped by the profound journey of cancer;

There is tragedy in the realization that some will not be here next year;

There is hope in the joy they find in life today;

There is impact in the education and insights expressed;

Above all else, there is unwavering and life changing connection in the realization of a shared understanding that melts the typical sense of isolation.”

CancerCon is truly like no other gathering.

By: Barry Klein