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Survival Story: Freya Barr

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survival-story-freya-barr-headerMy grandmother, Freya Barr, is a survivor of both breast cancer and then, six years later, of leukemia.

One evening, in the car ride home from a dinner out, I asked her about her experiences and this is what she had to say.

She was first diagnosed with breast cancer about 20 years ago. She went in for her routine mammogram and the doctors found a lump in her breast. Prior to that, she had had two cysts detected during routine mammograms so she assumed it was just another one.

But, when the doctors found out that the lump didn’t contain liquid, they knew it was a bad sign. They went in to remove the lump (a complicated process because Freya is a type C hemophiliac) but couldn’t yet tell Freya what type of cancer it was or how much it had metastasized until the excised it and took the margin. The margin is when the surgeons remove about an inch of tissue around the area of the tumor to see how the cancer cells are reproducing and much of the body the cancer is affecting.

The doctors also removed three nodes from Freya’s armpit and injected them with a radioactive substance that makes cancer glow if it’s present. Fortunately, Freya’s nodes were safe. She then opted to go for a lumpectomy, which was a fairly new procedure at the time. She was told that if, when she woke up from the procedure, and there was a drain next to her (physically draining puss from her body), it was a bad sign and meant that the surgeons had had to remove a lot from her breast.

“It is very humbling to know that you cannot control these things,” she told me. She was anxious about knowing how much cancer had actually been in her breast, especially because of her blood disorder, which complicates every medical procedure. She took solace in the fact that regardless of what she did, she couldn’t affect the outcome. That was her mindset going into surgery.

But, when she woke up, and there was no drain next to her. She was told her margins were clear but that she had to wait a few days while the doctors grew the cancer in a petri dish to figure out how virulent it was. That was the deciding factor as to whether Freya needed chemo or radiation.

Freya underwent radiation for seven weeks and her breast turned pink, black, and blue in addition to forming more and new growths. She was so anxious about it that she made an appointment with the radiologist, who then assured her that the skin discoloration and growths were normal. Since the time Freya had her cancer and leukemia, doctors have been using less intense chemo and radiation.

One of the most powerful things Freya said to me came after she complained about her radiation nurses bedside manner; they fled the radiation room as soon as it started because they were “scared sh**less. It’s still a primitive technology,” she told me. “For me, when I heard I had cancer, there was no choice. You don’t sit and cry and say ‘why me’ or ‘I’m not gonna do anything’ because if you want to live, you better start doing the walk. You better agree to do this, and the sooner you start doing it and stop whining and stop feeling sorry for yourself, the better you are.”

She told me about the “body narcissism,” as she calls it, that she experienced. “I became aware of how important the integrity of my body was to me. How you just take it for granted until you can’t take it for granted.” She told me she used the psychology of, “It’s breast cancer but it’s not the most aggressive. Things could be worse. I have to get out my grateful list. I’m grateful that it was only stage 1 ½ or 2. I’m grateful that I didn’t have to have a mastectomy. I’m grateful that it’s not the BRCA gene.”

She described her experience with cancer and leukemia as “a profound physical illness but it majorly shapes your psyche as well…It’s humbling. You better learn how to deal with fears, things you cannot control, how to accept something that is beyond your control, and accept what you can do to be a responsible patient.”

Freya told me about what she sees as an “invisible army of cancer patients that the world doesn’t see.” She had to go through chemotherapy for her leukemia six years later. After she lost her hair, she wore a wig for about five weeks until she gave up on it and realized she “didn’t have to look good for other people." When she would walk around in public without her wig, people would come up to her. They would tell her about the kind of cancer they had and give her hope that she would survive and go on to live her life normally again. “People would come out of the woodwork to offer me support,” she told me.

I asked Freya how she lives her life differently after surviving breast cancer and leukemia. “I think I am more humble and more compassionate to myself and others. And I think I try to life with the motto of ‘don’t waste a day.’ Every day I should be contributing something to this world. Don’t be a vegetable and detach,” she told me.

Freya Barr is one of the most amazing women I know. She is smart, strong, humble, and truly inspiring. Not only am I honored to know her as a person, but it is a true gift to be her granddaughter .