Early in her career, Mary Mitchell Zoeller was working as the only medical social worker in a small hospital about an hour southeast of Indianapolis. In other words, she was the person everyone went to – doctors as well as patients and families – to help patients avoid bumps in their journey through the healthcare system, to find resources for care that would continue once the patient had left the hospital, to provide emotional support and counseling. Then 10 years ago, she became the one who needed help.
“Could I be my own social worker? No, in a word,” says Mary. “Until that point, I’d never had to deal with health issues. I was the one who cared for other people. But nothing prepares you for a diagnosis of cancer. I did feel prepared in terms of being comfortable navigating the healthcare system. I was comfortable asking questions, talking with my doctors, contacting them. But learning I had cancer threw my mindset into a different orbit even though I’d worked in hospitals and with patients.”
Six months into her diagnosis, Mary met Kari Jones, the woman who spearheaded the creation of INTCC. “Kari and I met because we had the same oncologist and he introduced us by email. She’d been diagnosed with carcinoid at 26 after suffering symptoms for years. Even after she received the correct diagnosis, she was prescribed treatment that was not appropriate for carcinoid. Although she eventually found her way to those who were able to accurately assess her and provide the right treatment, she wanted to make sure no one else had to go through the same experience.”
Kari had set out to find a place to meet. “In the process of looking,” says Mary, “Kari found the Cancer Support Community of Central Indiana. They said they’d let us meet in their space as long as we had a qualified facilitator to lead meetings.” Mary wasn’t looking to become a group leader then. “I was still in that shocked stage of trying to incorporate a cancer diagnosis into my life. I didn’t feel I had much extra for anyone else at that point, but I agreed anyway to volunteer myself as a group leader. As a social worker, I was qualified. So I took that on and we served as co-leaders until late 2013 when Kari received a job transfer to her employer’s offices in Switzerland, where she remains employed today.”
Mary’s training as an MSW shaped – and continues to shape – the experience INTCC offers its members. “I began my own research on NETs. I knew that if I was in a position to help others by providing information and resources, I needed to do it responsibly and accurately. In order to do this, I was a frequent participant in regional and national patient education conferences. Kari and I forged relationships with patient foundations and welcomed their resources and advice. Kevin (another volunteer) and I continue to be involved with other NET resources and organizations to remain current and effective.”
The philosophy of INTCC arises out of Mary’s training. “We are here to help any patient or family member or support person touched by NETs, regardless of any circumstance. We are welcoming and dedicated equally to all members. We try to foster this in our meetings and strive to make it a safe, welcoming, friendly and respectful place for all. We structure the time to offer every member a chance to express him/herself and share with the group. When it is clear that additional help may be needed, I can work individually to help connect the member with outside resources.”
“Two hallmarks of my social work education were first, to start where the client is and second, to respect an individual’s right to self-determination. Both Kari and I felt that it was our role to help members acquire whatever information was necessary for them to be an active partner in choosing their treatment path. We were very clear that our role was not to ‘tell’ people what to do or where to go. And it was very certainly NOT to give medical advice. There have been a few times when members have not chosen what seemed like the thing to do in our minds—but we valued their right to choose what was best for them. As group leaders, it is not for us to judge, only to support as the member wishes to be supported.”
Reminding members that they are not alone is also a focus. “The isolation that one can feel with a rare or uncommon diagnosis is real,” says Mary. “The unknown is scary. Over the years, Kari and I found that one of the greatest impacts on our members is to be in a room with others, to share their story and hear others’. I mean it still feels like cancer, but it’s important to look across the room and see that there are others who are living and living with it well.
In her welcoming letter to new members, Mary tells everyone that the horizon looks bright. “New treatments are not only working to control the disease but also to improve quality of life. There are better ways of monitoring and deciding what is the best treatment and at what time. There are new doctors coming online and learning from current specialists and embarking on careers in this area. Lots of people are able to continue working and living strong, good and productive lives while managing their cancer.” Mary adds, “This is no walk in the park but this is more and more becoming a chronic condition that can be managed with a high quality of life.”
Mary encourages members to “stay connected with your support people. Although we can live a long time, we have to bear treatments and interventions that take a toll. It’s important to stay as fit as possible and to stay as strong as possible emotionally and spiritually, too, whatever that means for you, whether its church or yoga. Stay connected with your support people when things get stressful because they can help you stay on the path, physically, emotionally and spiritually.”
Mary has taken her own advice. Her support system still includes Kari. “Whenever my husband’s work takes him near Switzerland, we try to get together. We speak regularly. We are very close. Reluctantly offering to assist Kari and serve as the co-group leader and facilitator turned out to benefit me more than I could have imagined.”
To contact Mary Mitchell Zoeller or to attend one of the meetings, visit the website at http://indycarcinoid.org/.