Odds are you are traveling sometime this summer. When I travel my favorite thing is to chat with people and listen to their stories. Typically, when I share what I do—telling stories for cancer patients and family members—more stories are served up to me. Right now, Esther and I are in Ireland. I wanted to share some of the stories I’ve heard here that cover everything from epilepsy, to Hodgkin lymphoma to living with CLL long-term and newly diagnosed. There are common themes across all of them.
Michael Rynne and Andrew
Story #1 – Dropping into the Whiskey Fair in Dun Laoghaire just outside Dublin—I was on a day-long tour with my Irish friend Michael Rynne, the husband of a CLL patient (more about that below), and it was lunchtime. The construction workers at the ATM machine on the main street told us the best place to go was the Whiskey Bar, so that was our next stop. We were early, so there was time to strike up a conversation with the co-owner, Sabrina Mooney, 35, an attractive and friendly woman. Given my non-Irish accent, she asked where I was from. I explained I was an American who has been living in Barcelona. She then asked, “Are you retired?” I told her no, that I worked on the Internet. My friend Michael rushed to add that I didn’t do something sleazy like online pornography, but quite the contrary, tried to do good with videos for cancer patients. Boom! Sabrina immediately shared that her son, Jamie, is in the throes of treatment for Hodgkin lymphoma, a condition we cover on Patient Power. I told her I had interviewed numerous young people with the condition, and most are cured or doing very well, and that a new medicine, brentuximab vedotin (Adcetris), has been helping people who didn’t beat the cancer with initial therapy. Sabrina, took heart from that. But then she went on, “Jamie has been a caregiver for ME. Now I am HIS caregiver.” Why? Because Sabrina has epilepsy and lately has been having a few seizures a month. She developed it after meningitis as a youth. And while a strong medicine, gabapentin (Neurontin), has worked well for the past few years, the seizures have been getting worse. That sparked my discussion of seeking out clinical trials, in Ireland or the UK.
Sabrina Mooney and Andrew
Clearly, Sabrina was yet another example of someone affected by a serious condition (in her family case, two) and where she was actively looking for better care for herself and her son—the best doctors, the best medicines and access to both. Today patients around the world have a sense there may be better answers, but it takes them being proactive to uncover them. Sabrina and Jamie even went on Irish television to tell their stories, and my friend Michael had seen them and was touched then by what they said and, during lunch, touched even more in person.
Story #2 – Michael’s story is one of a caregiver, a father of four, with a wife of 18 years, Jan, who has been fighting an aggressive form of CLL. Rituxan didn’t work for her, but through Michael and Jan’s efforts, she was able to get into a trial across the water in Leeds, UK, with renowned CLL expert Dr. Peter Hillmen. Jan now takes ibrutinib (Imbruvica), and the large lymph nodes that plague her have shrunk dramatically. Michael explained the lengths they had to go to get in the trial and the difficulties they face in having their Irish health coverage pick up any of the cost. While patients will cross borders for better care and more hope, financial support often does not follow. In this case, it is a shame because Jan is one of those courageous patients willing to participate in a clinical trial not just to help herself, but to help all of us. While UK’s NHS pays for her medicine (and she’s the only Irish participant), the Irish system right now refuses to pay for the incidental costs of outpatient care. Michael channels his worries about Jan into being a strong advocate. He recognizes he can’t feel everything Jan feels as a patient, but he does all he can as a partner. It’s therapeutic for him.
Josephine Brady, Andrew and Jan Rynne
Story #3 – Dinner with Jan Rynne and Josephine Brady and their husbands. As our full day in Dublin was ending, Michael arranged a dinner for Esther and me with Jan, who we had met before at a CLL event last year in Cambridge, and another couple where the wife was newly diagnosed. People meet in strange ways. Michael has a furniture manufacturing business and provides counters and tables to libraries around Ireland. Josephine is a librarian. In conversation at the library, Michael learned Josephine, with swollen lymph nodes and fatigue, had been diagnosed with CLL/SLL. He shared Jan’s story, and the women made a quick connection. At dinner, I was delighted to learn that both rely on Patient Power, our friend Dr. Brian Koffman and his CLL Society, and partners at CLL Forum and HealthUnlocked’s CLL community for almost daily information updates, guidance and support. In speaking with Josephine, I was bowled over by how much she knows. And it seems she has a crush on Dr. Jeff Sharman and is ever grateful for his blog. Josephine is quickly catching up with Jan, understanding the importance of being proactive, seeking second and even third opinions, and being open to participating in a clinical trial.
All their stories are different and yet the same: the special clinical situation can be different—and probably is, even if the illness has the same name. But in all cases, we have intelligent people knowing they must go the extra mile to get the care they need and deserve. They may have to say goodbye to even a local, generalist doctor they like personally, they may have to travel for better care, and they may have to fight with insurance or government to get some financial relief. And in all cases, they need to take a deep breath, acknowledge the seriousness and uncertainty of their condition, and push themselves to move forward with an appreciation of every day.
Jan and Josephine understood well they were not alone. They are now connecting with CLLers around the world for information and support. For Sabrina, this is new, but I think Michael and I opened a window for her and Jamie. We prescribed Matthew Zachary’s “Stupid Cancer” site for Jamie where young adults with cancer connect. And I told Sabrina I may know a source for clinical trials for epilepsy.
There are answers for us all and warm feelings of making connections. The lesson for me is always reach out, tell your story, and you will get so much back in return!
As always, I welcome your comments and YOUR stories.
Wishing you and your family the best of health!