Linda Carey will never forget the day she was diagnosed with metastatic breast cancer (MBC) – the most advanced form of the disease. After experiencing a three-year remission of early stage breast cancer, Linda felt that something wasn’t right with her body, despite not having any pain or specific symptoms. She called her oncologist who ordered some tests, and after a few days her phone rang, and it was a nurse specialist who told her the cancer had returned to her liver. She was 46.
While a cancer diagnosis is scary, Linda and her husband Bob felt a sense of hope after her initial breast cancer diagnosis, based on her response surgery and subsequent treatment. When her cancer returned in 2006, the concept of hope changed, and the MBC diagnosis became what Bob describes as an “emotional roller coaster” for both of them. MBC, which means the cancer has spread beyond the breast and lymph nodes to other organs or tissues in the body, occurs in up to 30% of patients who, like Linda, have previously received an early breast cancer diagnosis. MBC can occur from months to years after initial diagnosis.
Looking for ways to help boost his wife’s spirits, Bob, who works as a commercial photographer, took some photographs of himself wearing only a bright pink tutu. What began as a lark became a photo campaign and eventually grew into something much larger, as Linda made it her mission to raise funds to provide financial support for breast cancer patients and their families.
Together, Linda and Bob created The Tutu Project, which raises funds through corporate and individual donations, as well as from the sales of their new book, TUTU. The funds raised through these initiatives as well as sales of their limited edition prints and tutus are then allocated to transportation, groceries, utility bills and rent or mortgages for members of the MBC community in need of assistance.
Unfortunately, since the start of COVID-19, there has been an increase in the number of patients needing financial support, and a large drop in breast cancer screenings and diagnosis. A recent study published in the Journal of Clinical Oncology found that breast cancer screenings dropped 89.2% between April of this year compared to April 2019, with a 47.7% decrease in diagnoses for the same time period. The study suggests this steep decline may lead to a future increase in patients with advanced cancer, which has lower survival rates. Reflecting on the potential impact of the current decline in early breast cancer diagnoses, Linda feels it is especially important for those without a cancer diagnosis to get their regular screenings as studies show early intervention leads to better outcomes. And for those with a breast cancer diagnosis, no matter what stage, to engage with their healthcare providers whether virtual or in person, support each other and share their stories – as Bob’s photos continue to inspire and bring laughter to those living with breast cancer.
How has the work of the Carey Foundation and the Tutu Project shifted since the start of the COVID-19 pandemic?
In mid-March, we saw an immediate impact. Immuno-compromised women could not go out of their homes, and this could mean loss of wages and access to groceries. We provided a local grant and then worked out a national program so people could access the grant quickly. The initial amount was modest, but we have seen that grow nearly three-fold as the community recognizes the unique needs of the cancer community to help with groceries and utilities during this pandemic.
We worked with a reputable organization to distribute the funds because we knew they could quickly disperse the monies and facilitate grocery delivery through their work with Amazon. We also recently received a $10,000 grant from AstraZeneca, for which those with a diagnosis of metastatic breast cancer were able to apply in early October. As someone living with MBC it’s exciting to be able to help the community because of my personal connection as someone living with the disease. And now more than ever, as COVID has shifted everything, it’s important to open our hearts and have love and compassion for all of us living with illnesses like MBC.
What has been your experience as someone living with MBC been like during the pandemic?
My first thought was, “Oh no, I can’t go out of the house,” but my oncologist set up telehealth appointments for me and we talked about my risks. I’m taking a break from chemo to give my body a break, so my immune system is not as compromised now. I realized after talking to my oncologist that I can go to the store by taking the same precautions as everyone else, such as wearing a mask. When I went for treatment for the first time during the pandemic, I was very uncomfortable because they were taking temperatures at the door. I couldn’t relax. I didn’t want anyone to get close to me, even the nurse. Living so close to the city, I was afraid if I contracted COVID-19 and had to go to the hospital, and they found out I have metastatic disease, they may not have the time and resources to take care of me. But I’ve realized I can still do many things I enjoy such as hiking. It has been my savior and I was so happy when they opened the state parks so I could get out and enjoy nature.
Reflecting on your interactions with the breast cancer community in the past few months, what topics have been top-of-mind amidst the pandemic?
I’ve tried to offer emotional support these past few months. It’s important that the Tutu Project be about more than financial assistance – that I’m also speaking to people regardless of their stage of disease. People are worried about being high risk for COVID-19 and the delays they’re seeing in surgery, testing and treatments. It’s also concerning to many in this community that some cancer centers are attached to hospitals. I had to wait almost five months for a PET scan, but I’m lucky because my cancer is stable. However, for those who don’t have stable disease and must have the testing, many of them are afraid and some opt not to do it. Over time I feel we will have a better sense of how we can safely proceed with medical care, but for each person living with cancer it will be different. Since the pandemic started our community engagements are now virtual but we continue to talk to each other even though we can’t be together. I’ve found we mostly do a lot of listening, especially early on because we didn’t have many answers at that point. Listening helps a great deal to show support for each other and to process your own feelings
Looking at your journey with MBC, do you have a particular moment that stands out as significant?
Yes, that moment 14 years ago when the nurse specialist called and told me I had MBC. It was very emotional because I remember wondering, what does this mean? Am I going to die? Now as I reflect back on that day as I’m about to enter another decade and I have a hard time saying “I will be 60.” Back then 60 seemed so much older. At the time, I didn’t think I was going to make it to 60. On the flip side, I feel that I’ve earned every wrinkle on my face. Getting older is hard but I’m very grateful that I’m here talking to you, and I really have to focus on that and say, “but I’m here!”
As a co-founder of the Carey Foundation and the Tutu Project, you’ve made a difference in the lives of so many. What accomplishment are you most proud of as it relates to the work you’ve done so far?
The idea for the Tutu Project was very vague and we never imagined it would become as large as it has. When we didn’t find an organization we felt was a good fit, we created our own. We had no idea what was going to happen with the Tutu Project, but we knew whatever the outcome, we would be giving back in some way. And today I’m very proud that we are still up and running and able to help the breast cancer community. As a producer who is usually working in the background, it was interesting to start sharing my personal story and deal with the vulnerability of being out there. But our organization has shifted as the times have changed, and we’re continuing to grow the Tutu Project to support those who need it most.
For those interested in learning more about and getting involved with the Carey Foundation and the Tutu Project, how can they do so?
They can go to the website at www.tutuproject.com and connect with us on social media. We want people to know they have access to myself and Bob, and that we can introduce them to other organizations if they need additional support or services we don’t provide. Everyone’s journey is different, but the fact that I’m here 14 years later is something to celebrate that can offer people hope.
MBC patients and caregivers can find resources to help them navigate their cancer journey at www.mymbcstory.com.