For This Leukemia Patient, the Lightning in a Bottle Festival Is a Place to Heal
Stephanie Stearns and her son Tyler at Lightning in a Bottle
Forget about plenty of sleep and an apple a day. Deep, pounding bass from legendary house DJ John Digweed was our idea of medicine.
My close friend has leukemia, but after several rounds of chemotherapy and a bone marrow transplant, she was in remission and ready to get down at the Lightning in a Bottle festival.
I met Stephanie Stearns back in the late ‘90s, when I was invited to a series of small, underground, mostly outdoor dance parties thrown by a group called B-Sides. The one thing I remember about her from those days is she always had a smile on her face, no matter what time of the night — whether we were in the freezing cold mountains or running on no sleep, dancing to a sunrise set.
The news of her illness hit us hard in December of 2013, when blood test results showed she had acute myeloid leukemia, or AML. AML attacks the tissue in the bone marrow that forms blood cells, including the crucially important white blood cells, which help regulate the immune system. Its symptoms can be devastating, ranging from extreme fatigue and shortness of breath to severe bruising and increased susceptibility to bacterial infection.
You might not think an electronic music festival would be a great environment for an AML patient, even one in remission. To outside observers, and even some younger participants, raves are places to abuse the body, not heal it.
But Lightning in a Bottle is different. As a longtime LIB attendee, I knew the Do LaB-produced festival focuses on health and wellness as much as on partying, with nonstop yoga classes and endless organic food options. It is also accommodating to parents, with a “Kidz Village” and Family Camp, which would be important as Stephanie planned to bring her three-year-old son, Tyler, along for the journey.
Most importantly, Lightning in a Bottle retains the “old school, OG” feel of our favorite outdoor gatherings of years past, including those B-Sides events. And it would be congruent with her doctor’s guidelines for protecting her compromised immune system — relatively small but spacious, with about 24,000 attendees spread across several acres of campgrounds, stages, art installations and communal spaces at San Antonio Recreation Area in Northern California.
After battling her illness for a year and a half, Stephanie was longing to dance nonstop, eyes closed, feeling transcendent, at a party that provided a quality space for her son. She had never been to LIB before, but I knew it was the perfect place. I couldn’t wait to see the look on her face when we got there.
Despite her condition, Stephanie is one of the lucky ones. Through the bone marrow transplant service Be the Match, she had found her “perfect match,” an anonymous donor able to give her genetically compatible stem cells through a process called peripheral blood stem cell transplantation, or PBSCT.
Stephanie’s oncologist, Dr. Ronald Paquette, explained to me her present condition. “Her current treatment is managing and minimizing graft vs. host disease. Graft vs. host is when donor cells attack parts of the patient's body. A small amount of graft vs. host is desirable as it has a graft vs. leukemia effect; donor cells attacking any existing leukemia cells.”
At LIB, Stephanie carried around vitamins and various prescription medications, but didn’t let them slow her down one bit. She was ready to take the festival head on — especially its healing aspects.
“The day you receive your transplant is referred to as your new birthday,” she said with excitement. “My second life of healing fits perfectly, and we should seek it out at the festival.”
Exploring LIB's acres of space, dotted with decorative, tented structures, was a non-stop lovefest. Each structure was filled with people teaching positive, life-changing affirmations. There were speeches on health and wellness, discussions on sustainable landscaping, seminars aimed to ignite passion between couples. The party was set upon a series of peninsulas, with several sections featuring booming sound systems. Attendees smiled and engaged in constant high fives along the bridges connecting the peninsulas. And everywhere you went, you felt like they knew your name.
As we ventured through the activities, speakers and booths, a couple favorites stood out for Stearns — “Sound Meditation, a Journey for Your Mind, Body and Soul” with Michelle Berc and “Essential Oils Wizardry” with Dr. Nick.
In the “Pineal Playground,” a calm area set under a large oak tree, Berc and her partner Richard Learmont orchestrated a chakra-balancing “Sound Bath,” designed to show attendees where they are holding energy in their bodies and how to release it for healing to occur. Learmont brought in gongs, Tibetan bowls, guitar, didgeridoo and quartz crystals. Berc specializes in crystal singing bowls. Their unique, individualized instruments complemented each other very well.
Michelle Berc playing her crystal singing bowls
Was healing occurring within our bodies during the session? Who knows? What we did know was that Berc and Learmont’s sound bath had fully engaged us down to our cores, especially when they ended the session with light breath work, vocal intoning, and elevating tones and harmonies from their instruments.
Berc’s sound bath was a perfect fit for Stephanie, who has always been a big believer in “resonance” and healing vibrations and frequencies. Berc has also worked with other cancer patients, many of whom have incorporated sound bowl sessions into their healing practice on a regular basis.
We also stopped by Dr. Nick Berry’s "Essential Oils Wizardry" booth, which boasted over 1,500 bottles of botanical extracts from his lab in San Luis Obispo. Berry holds a Doctor of Pharmacy degree from University of the Pacific and worked as a holistic pharmacologist in the medical marijuana industry, where he helped patients maximize the therapeutic potential of their cannabis by selecting strains based on their chemical profile.
“Studying cannabis taught me the potential of therapeutic-grade essential oils, which are the concentrated essence from medicinal plants,” he told us. “They are high in terpenes, which are molecules that are responsible for flavor and fragrance and are active at an extremely low concentration. I started investing in them, experimenting with them, and sharing them liberally with friends and clients.”
Dr. Nick appeared to be truly sympathetic to Stephanie’s needs. He inquired about her dietary and lifestyle choices, advising her to avoid foods that make the body more acidic, which can decrease the circulation of oxygen in the blood.
“Cancer thrives in hypoxic blood situations and I can advise you on proper food and nutrition,” he told Stearns. “I have various different options available which may be beneficial to your symptoms.”
One option he discussed for Stephanie was an organic, CO2-extracted hemp formula sourced from Europe, which is blended with various essential oils that have additional healing properties. This formula was non-psychoactive and meant to be used in conjunction with, not as a substitute for, her current medical protocol.
“This will help to stimulate your immune system,” he told Stephanie. “It can aid in the symptoms of [your] cancer therapy and make [you] more comfortable. It does not have any THC and is high in CBD. It’s sold as a hemp food supplement and avoids the psychoactive distortion in typical cannabis products.”
Stephanie discusses essential oil treatment options with Dr. Nick Berry
After her initial diagnosis in December of 2013, Stephanie’s condition had worsened quickly, as it does for most leukemia patients. She suffered from extreme fatigue and her body was covered in red petechiae dots, from burst capillary vessels just beneath her skin. She also developed multiple bruises, including a black eye, and experienced shortness of breath and “a strange chill.”
But after a month at UCLA Medical Center and an induction round of chemo, a bone marrow biopsy revealed that her cancer had gone into remission. Three weeks later, a second biopsy confirmed the remission. This was good news, but Stephanie wasn’t out of the woods yet. As she continued her rounds of “consolidation chemo” over the next several months, she began looking into the possibility of a bone marrow transplant — the most effective known treatment for leukemia patients.
Searches for bone marrow donors always start with family members, but only about a third are successful. “Unfortunately, my brother was not a match at all,” Stephanie said.
That sent her to Be the Match’s online database of potential donors. “The search via the BeTheMatch.org registry took some time, because the first round search was inconclusive, and additional testing had to be done on potential donor matches. Thankfully, there were a handful of these.”
By this time, however, Stephanie and her doctor had decided to focus on the chemo, the results of which had been promising. By July 7, 2014, she was still in remission and able to return to her job, as an art director for a cosmetics company.
But by September, the cancer had returned and Stephanie was back at UCLA Medical Center, undergoing much stronger chemo treatments.
“[It’s] often difficult to achieve remission after a relapse,” Stephanie said. “I was in the hospital for about a month and a half. It was extremely fortunate that I was able to reach remission after this round, which cleared the path for me to receive my bone marrow transplant.
“I received a final preparatory round of chemotherapy and received my transplant around 9 p.m. on December 8, 2014, after my stem cells were flown in. A new search on the BeTheMatch.org registry was conducted, but in the end I received a stem cell transplant from my original 'perfect match' donor.” For now, that donor remains anonymous, but after one calendar year, Stephanie will be able to contact him or her if she chooses to.
Becoming a bone marrow donor and potentially saving the lives of those who have leukemia and other cancers is easy, Stephanie says. She compares it to a blood test. Be the Match is always in need of volunteer donors, especially those of Latino, Asian and African-American origin.
Stephanie was discharged from the hospital on December 21, 2014, and is currently taking multiple medications as she continues to recover from the transplant. Her immune system is compromised by the medications, so she has limited defenses against getting sick, and would likely be need to be hospitalized and treated in order to recover from an illness.
Her courage in attending Lightning in a Bottle with her son, while dealing with her challenges, inspired every person she met at the festival. Complaints of sore feet and sleep deprivation disappeared from conversations. Watching her dance with eyes closed, face lit up and letting herself go to the sounds was all we needed. And for Stephanie, seeing her son dance was what she needed.
“I love all the music,” she told me, as she described the way it makes her feel better. “I don’t know what the track was, or the artist, but there was [one] saying, ‘I’m a dancer, not the DJ.’ And my son danced for the first time here. He won’t dance for me at home. But the first thing he did when he arrived is he peeled off to the side, took a little tangent and got down on the dance floor in front of Mom!”
Stephanie Stearns with her son, Tyler
Courtesy of Stephanie Stearns
Want to become a bone marrow donor? Register now at BeTheMatch.org.
Get the ICYMI: Today's Top Stories Newsletter Our daily newsletter delivers quick clicks to keep you in the know
Catch up on the day's news and stay informed with our daily digest of the most popular news, music, food and arts stories in Los Angeles, delivered to your inbox Monday through Friday.