Speak in Whispers: Linda Lancaster Carey

Linda Lancaster Carey of The Tutu Project shares her best advice on how gratitude will get you through a breast cancer diagnosis.

Linda Lancaster Carey says that she’s been on this planet for 53 years, although her husband would argue that it’s actually 54. She is adamant that she’s not 54 until she’s 54, which will be in November. She keeps busy with several jobs. She and her husband have a commercial photography business, and The Tutu Project falls under this umbrella. She also runs a non-profit that supports women and men living with breast cancer. They have no children but have a lovely, lovely dog named Sofie. Linda’s home is in a small town in New Jersey but her heart is still in New York! Art is a great love and one that she doesn’t make enough time for. She likes to write, hike, bike, go to movies, travel, and spending time with family and friends. Learning – she likes this, too. At the top of the list and in some way covers all the rest, she LOVES living. Not to be confused with being alive.

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Linda Lancaster Carey

HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?

I was diagnosed on December 29th, 2003 with Her2+ breast cancer. The cancer metastasized to my liver in December 2006. I don’t remember the exact date but I know just where I was standing. It was late afternoon, I had just delivered a project to a client when I received the call from my nurse specialist. The lobby of the building was cold marble and a cavernous space, at that moment I was glad that New Yorkers ignore so much as I was sobbing in the corner. 

HOW DID YOU FIND OUT YOU HAD BREAST CANCER?

In the shower when I did my monthly breast exam. It caught my breath (can a lump really do this?) and told no one for three days. Perhaps somewhere in my freaked out brain I thought that if I didn’t say anything it wouldn’t be anything. Having had a cyst removed several years back, I knew in my heart that this lump was different. I’ve never told anyone this. 

TELL US YOUR REACTION TO THE DIAGNOSIS.

Freaked out, cried, moved into shock and then pulled out my notebook and started making a plan with the tremendous support of my family and friends. I thought about death in the dark of the night. I wrote in my journal often asking myself if this meant I was going to die. When the sun rose in the sky I focused on living, learning the language of cancer and prepared myself, as much as I could, to the idea of having one breast. 

WHAT WAS YOUR TREATMENT PLAN?

It began as a mastectomy, followed by six months of chemotherapy followed by one year of a clinical trial and somewhere in there, 33 treatments of radiation. 

HOW HAS TREATMENT AFFECTED YOUR WELL-BEING, IF AT ALL?

I went into early menopause, no crying on my part although I probably scared my husband a time or two. Loss of libido, weight gain-no fun. The second time around the chemo destroyed my feet, not so good for someone living in Brooklyn.

HAS HAVING BREAST CANCER INSPIRED YOU TO DO SOMETHING GREATER WITH YOUR LIFE?

Because I’ve been so open with my journey, I need to say – I hate that question. In the beginning of this mess I was asked by so many people “now that you have cancer what are you going to do with your life?'”. This was asked in the context of the conversation that I should be planning on saving the world or something along those lines. A slight exaggeration, but this is how I heard it. That’s a LOT of pressure for someone that just had a breast removed, was blasted with toxins and probably still glowed from the radiation. After I settled down I knew that I’d probably want to do something and kept the question alive hoping that I’d recognize the answer when it came walking by. It did – in the form of The Tutu Project. This has opened my life and has given me a platform to share hope and hopefully inspire a few women or men that there is living after and with cancer.

SHARE YOUR BIGGEST STRUGGLES AND HOW DO YOU MANAGE THOSE?

I struggled with the stupid things that people say. I knew that it generally stemmed from not knowing what to say but some days I didn’t want to give them that out. I went into therapy, this helped. I also joined a writing group at the cancer center. One of my pieces was used, along with one other woman, and became a short play that performed several times for nurses, physicians and med students. The goal of this was to teach them how to speak to people diagnosed with cancer. 

FROM YOUR EXPERIENCE, WHAT ADVICE DO YOU HAVE FOR OTHERS WHO HAVE BEEN DIAGNOSED?

Each day put your feet on the floor. When the left foot hits the floor whisper “thank” and when your right foot hits the floor, whisper “you.”

You can find more from Linda at The Tutu Project, The Carey Foundation and Twitter.

Linda Lancaster Carey of The Tutu Project shares her best advice on how gratitude will get you through a breast cancer diagnosis. 

Photo source:

“This Is My Gift To You” by Hamed Saber is licensed under CC BY 2.0 / Text added to original

Personal photo courtesy of  Linda Lancaster Carey

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