Chances are you, or someone you love, will face an unexpected health crisis. For University of Virginia alumnus Bruce Rieder and his husband, Peter, it was a rare type of cancer that attacks the immune system – mantle cell lymphoma.
Rieder’s lymphoma treatment required wiping out his immune system. This happened just as the world was shutting down because of a deadly virus that no one’s immune system had ever encountered. He became a “virus refugee” but, happily, in one of his favorite places: Charlottesville.
Over several months, Rieder kept friends and family updated on his cancer journey with regular blog posts. Frank, funny and full of gratitude, Rieder provides powerful lessons for all of us on how to healthily face a health crisis.
Be Like Bruce: Tips for a Health Emergency
1. Be Open
Cancer is a common thread in Rieder’s family. His dad died of prostate cancer. His mother died of lung cancer. Other family members faced different kinds of cancer.
And yet, cancer was a forbidden topic. “One thing a cancer diagnosis does for some is to send them into a retreat of secrecy, shame, bitterness and isolation that is of no benefit to them or others,” Rieder shared. “I am determined to face this head-on, honestly and openly without reservation.”
2. Give Yourself Time to Grieve
Just before his 60th birthday, Rieder retired from a career in real estate development. He and Peter were a few years into enjoying their passion for traveling when Rieder experienced excruciating pain. At his local hospital in Arlington, an imaging scan revealed kidney stones. But it also showed a high number of lymph nodes – a telltale sign of lymphoma that tests later confirmed. It was September 2019.
Rieder took time to acknowledge the hard times ahead: “I can imagine the hazy outline of a path ahead. It will be a change. I will feel bad. I won’t be in control. I will be disappointed often by the things I can’t do. I may be surprised by the things I can do and the things I appreciate more fully. I can imagine a day when this cancer will not define every day of my life, even if today is not that day. I think I can create some space to grow from that.”
3. Find Ways to Be Grateful
Throughout lymphoma treatment, Rieder made sure to thank those who showered him and Peter with cards, homemade meals, and even an Easter basket. He felt “so very fortunate to have a good support system through Peter, our families, many friends and our church. I have what turns out to be pretty great insurance. I have access to some of the best doctors and facilities available in our country.”
4. Do Your Homework
Through the Leukemia & Lymphoma Society, Rieder found “extensive, specific, accurate, and current online information as well as knowledgeable people to speak with.” Rieder quickly grasped the gravity of the situation: “[Mantle cell lymphoma] is an incurable cancer with no known cause and no standard treatment protocol. The goal of treatment is to induce a remission for a couple, few, or several years before the cancer comes back.”
5. Get a Second Opinion
At his sister-in-law’s recommendation, Rieder headed to Memorial Sloan Kettering Cancer Center for recommendations on the best course of treatment. He considered getting lymphoma treatment in New York or closer to home, at Johns Hopkins Medicine in Baltimore. But ultimately, he decided that Charlottesville and UVA Health “checked all of the boxes” for him.
First, Rieder needed the best treatment. In the 1970s as a UVA student, Rieder vaguely knew there was a medical complex nearby. More than 40 years later, Rieder discovered UVA’s top-level expertise in blood cancers like lymphoma treatment.
Second, Rieder knows Charlottesville well. He comes back often for class and fraternity reunions. He found himself in a hospital room “with a view of the Rotunda dome to enjoy that daily connection to the dreams of my youth.”
He then spent a few months recovering in a townhome close to dear friends, his beloved alma mater, and natural beauty. Because of the pandemic, he stayed longer than expected in Charlottesville, where his chance of exposure to COVID-19 was less likely. “I feel a bit like a virus refugee, but we are perfectly comfortable in Charlottesville and have everything we need,” he said.
He and Peter enjoyed a hike up Humpback Rock, walks through UVA’s public gardens and long country drives. The beauty helped Rieder heal: “The countryside in all directions around Charlottesville is gorgeous. With the spring flowers and flowering trees, it’s a nice reminder of the continuity of the seasons, unaffected by disease and contagion.”
Looking back, if he had chosen New York, Rieder would have been in the epicenter of the pandemic in March 2020 when he came out of the hospital with a non-existent immune system.
6. Get Treatment Right for You
Rieder decided to have four rounds of chemotherapy at the hospital just a few miles from his home. The chemotherapy knocked out his cancer by Christmas. In February 2020, he settled into Charlottesville for a stem cell transplant.
At UVA, Leonid Volodin oversaw his transplant and yearlong follow-up care. A lymphoma expert, Volodin explains that, typically, “when we do a transplant for mantle cell lymphoma, we aim for a long remission of cancer.”
At UVA, Rieder can find more lymphoma treatment options when his cancer comes back. Dr. Michael Williams has long been a leader in lymphoma research. He has brought to UVA clinical trials of treatments that are now standard care. Dr. Craig Portell continues that work by overseeing lymphoma clinical trials.
Plus, “UVA is right at the forefront of what would be a potential follow-up treatment, CAR T-cell,” Rieder said. “Hopefully, the longer my remission, the more that technology and science can advance.”
7. Seek and Take Support
Rieder savored his community’s support. He re-read every card he received. For Rieder, support proved an “essential necessity. ... I am truly humbled at this advanced age to finally viscerally recognize that people need people (apologies to Barbra Streisand) and that makes me the luckiest guy in the world.”
8. Take Time to Reflect
For months, cancer was the only certainty that Rieder faced. “It was all-hands-on-deck addressing that at the expense of any other interest or priority,” he shared. “I’ve now begun a process of reflecting on the enormity of what we’ve been through.
“It is humbling and overwhelming. I think about the days [lying] helpless in a hospital bed but knowing that lots of people were rooting for me. I think about the sacrifices Peter has made to support me and keep us on the path. I think about the amazing doctors, nurses and other support staff at the Emily Couric Cancer Center and at the UVA Medical Center. … I’m allowing myself the luxury of sitting in the sun, sitting quietly, appreciating the here and now.”
This story first appeared on Healthy Balance, the UVA Health blog.