“What can’t be cured must be endured.” This Salman Rushdie quote is a favorite of Diana Keen’s, founder of Roots & Wings Foundation. It’s also fundamental to her foundation’s mission to help members of the metastatic breast cancer (MBC) community live longer, healthier lives. An MBC diagnosis means a person’s breast cancer has metastasized to other parts of the body — it is a stage IV, incurable, lifelong diagnosis.
And despite the severity of MBC, very few breast cancer research dollars are allocated to metastatic types. According to METAvivor, one of the first (and only) foundations dedicated to MBC, only 2% of total dollars raised for breast cancer research goes toward metastatic research, and as approximately 30% of all breast cancers will metastasize, the work of foundations like Roots & Wings is becoming increasingly necessary.
“As a patient myself, I was noticing that there wasn’t a lot of awareness yet about MBC,” Keen says. “Not only do we lack resources and research, the part that we are getting [is] coming up with really amazing things to extend our lives.” Keen has been living with MBC for nine years. She is on chemotherapy, in one form or another, every single day. Chemotherapy is known for its harsh side effects on the body and mind, meaning that research into medicines and therapies that can help alleviate some of these side effects is incredibly important, as it can help the body indefinitely sustain standard cancer treatments, like chemotherapy, radiation, and surgery.
“As our days get extended — and we’re so grateful for those days, and we fight really hard for them — we need to start taking care of our minds, bodies, and souls to endure this constant barrage of treatment,” says Keen. Roots & Wings supports integrative oncology (also known as integrative wellness) programs at hospital systems around the country, raising awareness about the unique needs of the MBC community and connecting patients with integrative therapies like acupuncture, oncology massage, reiki, and much more — therapies that became integral to Keen’s own treatment plan from the very beginning.
“I was really lucky that I was introduced serendipitously to integrative oncology,” Keen says. “I don’t know if I would be here so strong and with so much perseverance and grit without it. That’s why I created Roots & Wings.” Keen was young, healthy, and had just had a baby when she was diagnosed. She started treatment at Rush University Cancer Center on the same day she was diagnosed. “I was in complete shock and denial,” she says.
During that first treatment session, she walked around the hospital’s breast cancer floor and found the integrative oncology reception desk. She was intrigued by their menu of services but didn’t want to spare the time away from her family. “I thought, if I just got a prognosis in months, why would I spend an hour away from my family and loved ones?” she remembers.
But she made an appointment, picking acupuncture off their menu of services, knowing she could cancel if she changed her mind. “A week after my initial treatment, I had my first appointment with Angela [Lorbeck] at Rush, and it was life-changing,” Keen says. “Angela spoke to me about when getting a metastatic breast cancer diagnosis, it’s really important that I [deal with] the trauma and get myself situated in a mindset that is ready to fight every day.” Keen continued to take advantage of the integrative oncology services — meeting with a functional nutritionist, an oncology therapist, an energy healing practitioner and others to help her manage treatment side effects. Because there is no cure for MBC; instead, it must be endured. “The amount of things that you go through when you agree to be on this journey with MBC is overwhelming,” she says.
But Roots & Wings’ origin story doesn’t just begin with Keen, but with three women Keen overheard during one of her in-hospital treatment sessions. Before her infusion that day, Keen had received an oncology massage, and she was feeling good. “I was so grateful that my body was really clean to accept the infusion,” she remembers. Curtains separate patients in the infusion room, but Keen couldn’t help but overhear others’ conversations. Three women, in particular, were having exceptionally tough days. “They were all different ages, all different demographics, but they all had one thing in common: That day, they had no hope they would have any better days,” Keen says. “There I was, just feeling so much hope and perseverance from this integrative appointment, and I wanted to give them [this hope].” So she did, assembling a group of eight women to volunteer their time to assist Keen on the mission to “give these three women better days.”
Roots & Wings helps connect MBC patients with integrative wellness therapies at top cancer centers around the country. By helping patients access complimentary appointments or providing the funds necessary to cover their costs, Roots & Wings is also raising awareness about MBC. “It’s our hope that we will inspire the treatments for MBC, engage people with complimentary appointments and continue to grow [existing] programs,” says Keen.
Since its start in August 2020, Roots & Wings has established partnerships with some of the country’s best hospitals, including Rush University Medical Center, Dana-Farber Cancer Institute and Duke Cancer Center, among others. Through grassroots advocacy from Roots & Wings, these top institutions have increased those integrative oncology, or integrative wellness, therapies specific to the unique needs of the MBC community. “Our therapy needs to be different,” Keen says. “We’ll never ring that bell. […] We’re going to be dealing with this until medicine stops working or the side effects from the medicine are [unmanageable].”
According to Angela Lorbeck, manager of Integrative Medicine at Rush, these therapies can be very beneficial for MBC patients. “When a person makes the decision to incorporate integrative wellness therapies into their Western care, it can be a path to personal empowerment and improved health outcomes,” she says. “At Rush, we understand that there are many ways cancer can affect your life. To meet the various challenges associated with cancer, our Supportive Oncology team offers tailored services to support a person’s well-being and quality of life.”
Integrative oncology refers to the many different kinds of healing modalities to complement cancer treatment, but specific therapies and appointments tailored to an MBC patient include functional nutrition, in which patients can learn how to keep the body strong for ongoing treatment; MBC-specific exercises, as MBC treatments affect things like bone density and the body’s ability to move; oncology massage, as limited mobility can affect the lymph system and how the body gets rid of toxins; and oncology therapy, or talking with therapists who are trained to understand the full scope of an MBC diagnosis.
Unlike early-stage breast cancer, MBC is a lifelong diagnosis. This is why Keen also wants Roots & Wings to be a resource for an MBC patient who is looking to find a community of people who understand what they are going through. Keen says it is important to treat MBC holistically — focusing on the mind, body and spirit. “You need to find your faith, whatever your faith is,” she says. “I know faith is one of those funny words that has a religious connotation behind it, [but] there’s ways to find faith through community. You have to feel connection, whether it’s through community, religion, yoga, energy work — things that will support your mental health and spirituality.”
That’s why access to services like these, available under the same roof as a patient’s oncology team, is so important. And the medical community is taking note, with some institutions moving toward incorporating integrative wellness therapies into the standard of care. Keen notes that some of the institutions they work with are creating treatment plans that include a meeting with an “integrative liaison” from the start. “[The liaison] will sit with them and talk with them initially about what they might need, help them get those appointments, and will help them with the journey to make sure their mind, body [and] spirituality needs are met,” Keen says, noting that integrative wellness therapies should always be scheduled in conjunction with their oncology team — “not going out and trying things without their oncologist knowing; that’s a really important part of the message,” she says.
Roots & Wings’ impact on the MBC community is significant, despite the organization’s relative youth. Keen’s initial goal was to positively impact the lives of the three women she overheard in her infusion room, but as the foundation continues to grow, so do Keen’s goals. “In the next five years, I would love to create more of a donor base and be able to expand [our reach] to the top MBC institutions from coast to coast, border to border,” she says. “Beyond that, I have wild dreams that we’ll be able to [make] integrative oncology available to under-resourced and the under-served areas [for patients who] don’t have the connections to empower themselves or advocate for themselves.”
Every year, Roots & Wings hosts Move IV MBC, a virtual four-mile event to raise money to provide more MBC patients with complimentary integrative oncology appointments. Move IV MBC is held around Aug. 8 every year, commemorating Keen’s first day of treatment. “It was really important for me since 2014, every year on my cancerversary to have some sort of physical challenge, [because] right away I realized [treatment] was going to diminish my ability to move like I used to,” Keen says. “We just ask you to move — walk, swim, bike or drive if you need to.” Or even dance — this year’s event, “Bust a Move,” will be held on Aug. 6, 2023. “We try to keep it uplifting and fun; cancer is heavy,” Keen says.
Raising awareness about MBC and how integrative oncology can support those diagnosed is so important to Keen because of how beneficial she found those first complimentary appointments at Rush. Despite her initial hesitancy to schedule the appointments, they gave her hope for her future. “If I could do that for someone else, reminding them when they’re in their darkest nights that there’s a light ahead, that it’s not linear; you can have better days even after you feel like you’ve had your worst,” Keen says. “Integrative oncology supports you and can help you feel better and live better.”
With the recent trend of cancer-care institutions expanding their integrative oncology departments, it’s clear that healing modalities supported by organizations like Roots & Wings should no longer be labeled as “alternative” treatments, but treatments that should be included in the standard of care. “This is life-sustaining support,” Keen says. “I know right now it’s not as en vogue to use battle words, but I am fighting for more time. […] There are days where you’ve got to have every resource possible to get through them.”