What if the body is actually a mirror of how we live our lives?
Meet Linda and Bob Carey, the co-owners of The Tutu Project™ of The Carey Foundation. Their mission is to raise funds for women, men, and their families to ease the financial burdens that come with breast cancer diagnoses. Net proceeds from the sales of all products are contributed to The Carey Foundation. The non-profit 501(c)(3) organization created in 2012, collects and allocates funds to the breast cancer community for everything from wigs and lymphedema sleeves to transportation, childcare, and counseling. They offer laughter, understanding, and real-world support. The Tutu Project is more than a place for financial support; it’s a hub for community engagement,emotional healing, education, resources, and venting on life’s frustrations.
The One Hundred supported by Mass General Cancer Center
In 2003, your life changed with a breast cancer diagnosis. Can you give us a sense of your journey, moving from one hospital to another and the differences in their care?
Moving from Phoenix to Brooklyn was an exhilarating journey, but add a cancer diagnosis, and it seemed as though the sky had darkened, and clouds gathered.
Bob and I had lived in Brooklyn for only eight months, and I hadn’t looked for a doctor yet. It wasn’t on the top of my to-do list as I was a healthy 42-year-old. Or so I thought. I wanted a physician who was knowledgeable, direct and would save my life. As I type these words, they sound on the high side of dramatic, but at that moment, it was how I felt.
How does one hand over their life to a total stranger? Find someone who knows someone, who knows someone, who knows the best. I loved my surgeon and oncologist, and we had a wonderful 12-year relationship.
Enter new insurance restrictions. I received a letter from my health insurance company stating my in-network physician’s had been “updated,” and I could no longer see either doctor. I panicked. I freaked out. I raged. How could I possibly find someone else that I trusted? My oncologist handled my fears with great compassion and referred me to a colleague. I felt abandoned.
On the day of my treatment at the new hospital I convinced myself that all would be well but as I walked in all I saw were very sick people. It wasn’t entirely accurate, but my imagination was in overdrive. The new oncologist was very kind, knowledgeable, and didn’t rush me through my first appointment. I took this as a good sign. My nurse was friendly but very busy, and I had to temper the urge to run back to my old cancer center. I had expectations that a social worker would stop by my chair for a welcome chat and that perhaps the nurse would sit and ask me about myself, sort of a get to know me conversation. It didn’t happen.
It’s not as if I didn’t receive stellar care, I did, but I needed reassurance that all would be okay, from anyone. The center was incredibly busy, and I had to find my way around myself. It’s not that I couldn’t, but comparing it to my previous experience, in my head it always came up short.
One year later the cancer center split from the hospital and moved to a new location. I had a huge smile on my face as I explored the space. There were windows–with a view! The room was large and the chairs comfortably spaced. The nurses, the lovely, lovely nurses, had more time to talk. I learned that they no longer had to mix the IV’s, and while they were still very busy, the atmosphere was much more relaxed. I understand that some of the difficulty I had adjusting came from within me and I’m thrilled that, odd as it may sound, it now feels like home.
The Tutu Project is such a catchy name. How did it start and how has this program impacted others?
Bob is a commercial and fine art photographer and his art play a significant role in his life. When Bob began taking self-portraits in a tutu, it was more for self-expression and self-therapy as he adjusted to living an urban environment. Before there was my cancer, a Facebook page or a website, the project was called “Ballerina.” As the project evolved, it became less about Bob and I, and more about the community we were building. A more encompassing name was needed, enter The Tutu Project, an initiative of The Carey Foundation. Tutus have an interesting effect on people; it’s amazing to witness the transformation on someone’s face when they put one on. It’s what we wanted to create; fun, laughter and provide a break from the challenges of cancer. We began receiving emails from around the US and then from around the world telling us how much the images helped as they went through treatment. Who knew a piece of tulle could make such a difference?
Your non-profit, The Carey Foundation, is helping other grass root organizations. Can you tell us about it and what impact are you making on these organizations?
As we discussed goals for our non-profit, Bob and I loved the idea of bringing smaller businesses together, creating a strong voice and support for the breast cancer community. Our funding strengthens non-profits, resulting in a larger community served. As Bob and I continue to experience the high cost of this disease, it reinforces our resolve to raise more funds.
Linda, you made the following comment: It’s Never Been About us”. What did you mean by that?
In the beginning, this project provided Bob and I a break from the seriousness of cancer. There were times I was unable to travel, but Bob would always send me pictures of the latest tutu adventure. The images made me smile but also mirrored emotions I was experiencing as I went through treatment. When the project went viral, we saw how we could help others and invited them into our life. That may sound strange, but in a sense, it’s true, and at that moment it was no longer just about Bob and I.
For others living with Mets, can you please give us a sense of your life at a glance and what message you want to give others?
I have two jobs, The Tutu Project, and our commercial photography business. The work keeps me very busy but helps me focus on something other than my cancer. I’m still in treatment; I get an IV every three weeks and am on an oral medication, seven days on and seven days off.
I believe that my positive attitude, while it won’t cure my cancer, certainly helps me live with it. I find myself whispering, “thank you” each day in gratitude. But–I’ve learned that no matter how many uplifting thoughts I run through my mind, each day isn’t going to be exceptional. I’ve learned to accept this.
After ten years of living with metastatic disease, I know the person who understands my body and is my strongest advocate, is me. My memory isn’t what it use to be, so I take a notepad with me to doctors appointments. When I return home and find myself not understanding something, I ask again.
This last one is difficult to admit because I know better. I don’t always take time for myself. You’d think that with cancer I would, but I don’t. I’m sure that I could compile a list of reasons why this happens. Instead, I’ll say that I’m working on it and some days are easier than others. Balance, it’s a tricky little bugger.
Lastly, what do you dream of accomplishing over the long-term with your business and your life going forward? How can others help?
My dream is simple; continue raising funds to expand the reach of The Tutu Project. My personal goals seem to change weekly, but I can say that I want to travel, enjoy my family and friends and make time to create art.
One way that people can help is to host a fundraiser. We have suggestions on our website, and I can be contacted directly to discuss in detail. Dare2Tutu is a campaign we run from October 1 to November 3rd. The Tutu Project™ dares people across the world to wear a tutu, take a picture and donate. There are many levels but to simplify it, buy a tutu. This is easy, we sell them on our website:thetutuproject.com. Fundraising doesn’t have to be just in the month of October, tutus are fun all year round!
Companies use social good to unite their employees and give back to the community. We are open to creative partnerships that do wonders for the soul of both organizations.
Created by @bobcareyphoto The Tutu Project™.
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