UPDATE: 2/15/19: We have recently learned that Allison passed away 1/14/16 and that her WHY? Foundation was committed to providing comfort to cancer victims. RIP Allison.
UPDATE 3/24/15: World Tour of film begins to benefit community cancer organizations
By Patricia Caso/February 19, 2014
In January 2011, and only 38-years-old, Allison W. Gryphon had life by the tail! She had already won awards for her first feature film, La Cucina, launched a blog and a Hollywood column. Then in April, 2011 with little warning, she was diagnosed with Stage 3A breast cancer.
“I want to reduce the fear of the unknown in cancer. Sharing all the information that continues to come to me is core to my film…”
Allison W. Gryphon
Instead of turning her life upside down, or worse, stopping, she decided to make a movie. The film, What the F@#- is Cancer and Why Does Everybody Have It?, was a personal one for her and countless cancer fighters. Allison wanted an honest understanding of what she and they would face in their cancer battle, physically and emotionally.
All I could think when I heard about Allison’s journey was, “How does she do it—all?” She shared some of her precious time to answer that question for TWE and so much more…
EYE: How are you now? Looking forward to the “five year all clear?”
ALLISON: I feel great. The phrase my doctors use, and I subscribe to, is that there is no evidence of disease in my body. However, I do not buy into “all clear.” Depending on the type of cancer you have, you always have the risk of having cancer come back.
We all want finality in our circumstance of getting through something scary. Cancer doesn’t offer that. Here’s what I would like to pass on: Every day that you are walking and breathing and smiling on this planet is important. I think, for me, that’s why life is a little bit sweeter.
I want to reduce the fear of the unknown in cancer. Sharing all the information that continues to come to me is core to my film and thewhyfoundation.org. Rather than run when cancer comes to us, we run toward it.
EYE: How did you keep it together after your diagnosis?
ALLISON: I came up behind-the-scenes in film production which is problem-solving on a large scale. I am a problem-solver. I got the diagnosis, assessed the situation. Then I found out what I had to do to get this tumor out of my body, not get sick from treatment and make it through to the other side.
“I got through it by having an honest talk with myself. Let’s not dip it in chocolate.”
I wasn’t shy about it. I knew I needed to be very open and honest. I knew that I couldn’t accommodate how anyone else felt about my cancer, only how I felt. I needed to ask for help in ways that I never asked for help before. That was the most difficult part, not being totally self-reliant.
I started planning with what I needed to know for pre-op, for post-op, and made a list of questions for the doctor so I would not be depressed, so I could feel well and get the most effective treatment.
I carried my notebook with me everywhere. I got through it by being totally and immediately proactive. One thing I knew was that if I had to have a tumor, I would do something with it that was productive.
Trailer to Allison’s film
EYE: At that point you decided to make the documentary?
ALLISON: Yes. It has really helped me. At first, after the diagnosis, I thought, “I’ve been around and I’m a smart woman. I take care of myself. Why don’t I know anything about this?” I was frustrated with myself. Why didn’t I educate myself about what it means to go through cancer?
The answer is that it’s just too much, too overwhelming, too scary. So what can I do to make it less scary? So that’s what happened. This documentary. For me, in many ways, it was my way of taking control of the situation. You have cancer when you are diagnosed, so the goal is to not let cancer have you.
EYE: How did you handle the financing?
ALLISON: My history is in the film business. At the time, I was working on Pirates of the Caribbean IV. I had gone to Netflix looking for a movie on what to expect with cancer, and the movie I was looking for wasn’t there. I thought that was crazy.
“So I sent out an e-mail to everyone I know that I wanted to make a movie. And, everyone said, ‘Great! I will help!’ And everyone brought a friend.”
Everything was donated from top-notch people for the color correction, cameras, recording, music and Skywalker sound, etc. I saw people’s desire to fight cancer with what they had. We can’t fight cancer the way doctors do but we can all do what we do.
Our message on the website is you don’t need to have medical information to fight cancer; you just have to be open to confronting it, participating in any way you can. You can do it with music, with sound, with filmmaking, dancing. Bottom line is there was no financing for this film.
EYE: Before cancer what drove you? And, what drives you now?
ALLISON: I was very lucky to be raised by a mother who said to me every day, ”You can be anything you want to be as long as you apply yourself and never give up.” She infused a fearlessness in me. I’ve always loved life passionately.
I think passion is what got me into the movie business. It is that same passion that got me through the cancer and keeps me going now. I’m here to live the best life that I can and get everything out of it that I want.
Clarity comes with the cancer diagnosis. All the things that didn’t matter went away. I didn’t have time for them. I needed to live. That wisdom may have come later in life, or maybe not, but definitely the passion is still there.
I am a better filmmaker. I have the ability to relax better now. I was always hardcore driven, “I am going to make things happen!” Now I am still going make things happen, and I will stop to smell a flower, stop and have a cup of tea. I am actually getting a whole lot more done.
EYE: What is the favorite moment and scene from your documentary?
ALLISON: Being brave. I had no idea the profound loneliness of being on the other side of being held in such high regard as a brave person. It’s my most important and revealing part of the movie. It seems to separate you from the person who is calling you brave.
Everyone is being very careful, instead of being a regular person. It’s such an honor and such a conflict. I understand where their hearts are. But when you are out to dinner and you’re in chemo and you have your head shaved and you are wrapped in a compression garment, it’s nice to be considered brave, and it’s really great to talk about the weather.
The Why? Foundation
EYE: Why did you put such a profane word in your title?
ALLISON: Because it was what came out of my mouth, actually a friend’s mouth. She said, “You know I know people who have been killed, I know people who have heart attacks. But more than anything I know people who have cancer. What the F@#- is cancer and why does everybody have it?”
That’s when I said, “That’s it, that’s my title.” It’s so honest. I didn’t do it to be provocative. I did it because it is what everybody is thinking and what everybody is saying. That’s the question. Even with the most polite people, when there is a tumor involved, the f-bomb comes out.
EYE: On your site, you and designer Piper Gore have come up with a new Look Book of functional fashion options addressing post-surgery and chemo realities. It includes a top called the Fight T. What does fashion have to do with fighting cancer?
ALLISON: There are all sorts of wigs, clothes, hats and things that are out there for people with cancer. Suddenly you are going to have a different style because you have cancer?
You don’t have control over so many things when you have cancer. One thing you do have control over is looking good and feeling good. It’s nice to feel confident, be comfortable, get dressed with ease. When I was having my mastectomy, it was at the same time of year all the breast cancer walks happen.
I was honored that so many of my friends and people were walking for me. They all bought me tee shirts. I burst into tears. I couldn’t lift my arms to get a tee shirt on.
That gave me the idea to develop the Fighter T and The New You Fashion Look Book with Piper Gore. I wasn’t prepared for this new body after all the surgery and radiation. So we pulled together some dressed-up, casual and workout looks.
Piper says, “Fashion can be your armor.” The Fighter Line is specifically designed for getting through it!
EYE: What is the point of The Why? Foundation?
ALLISON: It’s all about honesty and is a response to what I wanted and what I found people in waiting rooms also wanted. I wanted a mom-and-pop cancer stop that has information from caregivers, doctors, people who have survived, people who are fighting cancer.
I want to know about what it takes to fight cancer day-to-day, hour-to-hour and minute-to-minute. Very often after you’ve done chemo, when you wake up, you don’t want to get out of bed. What’s going to get me out of bed? Those are the things we want to address.
Cancer is like a fingerprint. It’s different for everyone. The Why? Foundation constantly updates resources–what has worked for other people so you can better approach your own situation. It’s about the whole person not just the cancer.
EYE: What is The Wall of Smiles on your site about?
ALLISON: Anyone can send in a smile. I want a million! When you are going through cancer the power of the smile is over the top. At the time I was diagnosed, people would ask what they could do. I said, “Take a picture of yourself so I can have it with me all the time.”
People sent me so many pictures. It was amazing. I printed out every single smile and I put them in the binder with all my medical papers. While I was in a waiting room, I would look at them. I also made a giant collage so when I was so sick in bed I could look at it.
EYE: What is the best advice you’ve gotten?
ALLISON: When my former boss, who went through prostate cancer, learned of my diagnosis, he gave me some ideas: “Receive only what you want to receive. You are obligated to do nothing. Feel what you feel and then let it pass because everything changes anyway. We are just passing through so do everything you want to do the way you want to do it. The thing about cancer is that you don’t get it until you’ve got it. People understand or not.”
Continuing on that, cancer is probably the scariest thing you will face in your life if you are faced with it. Just be honest with yourself as you move forward.
EYE: In 2014 you will continue your charge to take the fear out of cancer, promote your documentary, your book, as well as directing a new documentary, Hong Kong Café. Do you ever feel overwhelmed? How do you unwind and recharge?
ALLISON: It’s hard to feel overwhelmed about anything else when someone has just told you that you have Stage 3 breast cancer. If I have too much on my plate, then I take things off. I don’t let it get me. Unwind? I need to do more of that right now.
I started to make the movie when I was diagnosed and it came out just last month. So, it’s been nonstop. I go for a drive, listen to music or enjoy a cup of tea. I turn the computer and phone off for hours and unplug from the world. I can’t do the big vacation, but I can take little ones. My relief is finding the mini-vacation in every day.
EYE: Thank you, Allison, for such a remarkable gift to those fighting cancer as well as those who need to help, care for and support the fighters. Allison’s film is available on iTunes. Feel free to rate it and like it. Check out the The Why? Foundation and don’t forget to smile!
It’s Tina, Michelle’s sister. This was so great to read. You are inspiring. My 7 year old is shaving his head with 76 other students from his school and raising money for St. Baldricks Foundation here in Bermuda on March 14th. He’s been interested in it for a year now but I let him do it this year when he could actually understand what it was for. Keep up the amazing work…hope you are feeling good now!