In many ways, Linda Carey is a unicorn. She exudes positivity. Her warmth and wit add sparkle to any conversation. There’s a rare energy that glows as she breaks down the important work of The Tutu Project. And, much like a unicorn, she defies the odds.
For the last thirteen years, Linda has lived with stage 4 breast cancer, also referred to as metastatic breast cancer. Metastatic means that the cancer has travelled through the bloodstream to create tumors in the liver, lungs, brain, bones, and other parts of the body. The five-year survival rate for metastatic breast cancer is 22%, with a median survival of three years, and it cannot be cured – though it can be controlled through various treatments.
Despite the ongoing battle within Linda’s body, she doesn’t dwell on the fact that she has cancer. She has hair, she doesn’t look sick, and she’s still active. “I don’t wake up in the morning and say to myself, ‘I have cancer.’ In fact, the medicine I take often gives me the worst side effects, not my cancer,” Linda acknowledged. “After 13 years, I have learned to manage the side effects of the medicine and this disease. Although it certainly plays a role in my life, I don’t see cancer as a part of my identity.”
A lot of people don’t know what the term ‘metastatic’ means. Linda’s advocacy begins there. “First, we have to educate people about what the disease is. Secondly, I believe only 7% of cancer research is performed on metastatic cancers. The conversation has shifted, but I don’t think that number has increased much,” Linda explained. “I’m so lucky that I’m here today, and it’s only because my body has reacted well to the cancer drug that I’m taking. Others aren’t so fortunate, and we need more research to be done to improve other lives.”
Linda explained that a metastatic patient begins by figuring out the right treatments to control their disease. For example, chemotherapy didn’t take well to Linda’s body. After a few months of trying, Linda switched to Herceptin, a drug that responded more favorably. “It’s like a huge game. You find a strategy that works, and then you take a breath. Things are good for a while, but that could change within a few months.”
The next step, Linda explained, is managing the side effects of the drugs, which can be extremely harsh. “You have to find the right ratio of effectiveness in fighting cancer and the least amount of side effects as possible. It’s a balancing act, and I don’t want to go completely off the drugs, but some people do,” Linda shared. She admitted that she was extremely lucky to have found a drug that her body responds to with minimal side effects. For others that are less fortunate, the side effects can be brutal and debilitating.
After trying different treatments and getting used to the side effects, patients have to try to get back to their life, which can be the most difficult. “You also have to come to term with the fact that you may have to take these very strong drugs for the rest of your life, and the fact that some of them can cause other forms of cancer.”
When asked what would be most helpful to people living with metastatic cancers, Linda said, “I think patients need more access to forms of experimental medicines and drugs. People die when they don’t respond well to available medications, and access to clinical trials would save lives. For some people, there’s no other option. Access to more care and further research is important.”
Financial security, of course, also plays a role in both treatment and well being. “The toxic financials of cancer can impact how someone responds to treatment. It’s added stress on the body,” Linda explained. When she was diagnosed, she and her husband, Bob, were self-employed and had just moved to Brooklyn, so they know the pain that can come from paying for treatment. This is why The Tutu Project and the Carey Foundation exist today.
Bob used his tutu-clad photography to cope with Linda’s diagnosis. Linda shared the photos with fellow patients at chemotherapy appointments to inspire and uplift them. Together, they created a movement. In the last two decades, The Tutu Project has blossomed from a self-published book of photos to a worldwide phenomenon bolstered by social media and corporate partnerships like those with Jet Linx, raising funds for the real-world expenses faced by breast cancer patients and their families.
“People face incredible hardships on top of a breast cancer diagnosis. Insurance doesn’t cover transportation or childcare, not to mention affordable wigs or mastectomy bras,” Linda explained. “Having cancer is expensive, and it’s time consuming. You can’t work, and you can’t drive yourself to appointments, not to mention taking care of children. That’s where our foundation comes in to help.”