Nicole Hollady Puzan

by Claire Hollady

I often say the two years between my daughter's ovarian cancer diagnosis and her death at the age of 28 years were the best worst two years of my life. I always knew my girl, Nicole Hollady Puzan, was strong. She'd dealt with more adversity in 26 years than many people experience in a full lifetime, but I honestly didn't realize how courageous she was until she let me into the most private and intimate days of her short life. It was a gift I thanked her for every single day.

We realized something was very wrong on Christmas Eve 2009. She was 26 years old, working 16 hour days as the manager for a prominent DC glass school and also as a glassblowing assistant for two other women artists. It's hard work and explained away the back pain and fatigue, until that night when she showed me how bloated she was and said she was having a difficult time breathing. Ovarian cancer was the first thing that came to my mind. I'm glad I didn't know what the next two years would bring. During her first surgery, which happened during DC's Snowmagedden 2010, the surgeons removed 14 liters of fluid and determined her ovarian cancer was Stage IV. It was the beginning of the process of realization that, thankfully, doesn't happen overnight.

As Nicole's mother, primary caregiver and medical advocate, there were dozens of difficult things to watch Nicole deal with. The obvious ones: Tests. Surgery. Chemo. Losing her precious pink hair. But the hardest was watching her give up her dreams...one big dream after another. And each sacrifice she made to this damned disease was one step closer to her realizing she was not going to survive. A hard pill to swallow when you're just hitting your stride.

First, she realized she would never get pregnant. Okay, I could talk her off that ledge with discussions of adoption or her partner carrying a baby. Ah, right, partner not in the future. Or marriage. Keeping friends was hard enough. Not many twenty-somethings want to face their mortality. No big art show. Hawaii, the first thing she requested when she came out of her second surgery seven hours too soon and realized that was bad news? Nope. No being Maid of Honor at three of her closest friends' weddings, two of whom ended up with a memorial table decorated with Nicole's photo and artwork instead. No more tattoos, though she did manage to squeeze in a last big whopper (with the oncologist's encouragement) between chemo regimens. No point in going to the dentist. No sense in renewing the car insurance. No new eyeglasses when her prescription got too weak. No point in wearing glasses. And then she was gone.

But here's the beautiful thing about Nicole. She didn't suffer these losses in silence nor did she complain. She just wanted to talk about living with cancer - and living while dying from cancer - as openly and honestly as possible. She worried about how her brothers would handle her death and what the family would be like when she was gone. She asked for and accepted help with grace and dignity, which requires a tremendous amount of maturity, trust and courage, something I now realize doesn't come naturally to most of us. It wasn't easy talking about these topics every single day, but I couldn't imagine NOT talking with her about them. What else was important?

One night not too many weeks before she died, Nicole was watching me doing dishes, getting medications ready for her IV, and doing an ostomy supply inventory when she said, “I love you, Mom. Thank you.” She made being her mother and her caregiver very easy, but losing her so very hard.
 

  - Claire Hollady, 11/22/2013

N.E.D. wins two TIVA DC Peer Awards

This past weekend, we attended the 2013 TIVA-DC Peer Awards.  As always, the event was fantastic, and Cerphe Colwell was a fun and engaging host.  And we are honored that our peers recognized No Evidence of Disease in two categories.  We won the Gold Peer Award for Best Documentary and also the Docs in Progress Gold Award, which came with a prize from Word Wizards (which we will put towards our What Every Woman Should Know outreach campaign!)

We are sure the TIVA Peer awards will shine a little more light on this cause, and inspire more people to see the film and make that appointment with their doctors.  Awareness is the key! 

We also want to congratulate the other winners, including 522 Productions, who won “Best of D.C.” for their film “The Lucky One.”

We want to thank TIVA-DC and the whole DC film community, which has always been a bastion of support to its members.  It truly is an honor to be a part of this group. 

Eileen Fogarty and why we made N.E.D.

Executive producer and director Andrea Kalin recently spoke on WAMU's Metro Connection about No Evidence of Disease.  Within a few hours, we received this email from Cara Fogarty.  The sentiments she expressed here, and the experiences she and her mom went through, are the very reason why we dedicated three years to making this film.  We are intent on shattering the silence.  With Cara's permission, we are sharing her email with all of you:

 "I heard your interview today on WAMU's Metro Connection. I cannot tell you how emotional of an afternoon it has been since I heard it. In a good way, I think...

My mother was diagnosed with an extremely rare form of vulvar cancer in 2004. It was cancer of the Bartholin gland. She survived but went through hell and back, several times. She was treated by an awesome doctor at UVA Medical Center in Charlottesville, Va., Dr. Laurel Rice, who has since moved on to the University of Wisconsin.

When my mother twice had to see a new gynecologic oncology doctor, they would always comment on how rare her cancer was. Something like one in 1.5 million. She, and being her caregiver, me, always felt so alone. There were no web sites, no support groups, no one to talk to, no one to learn from, nothing...

My mother had also had two bouts of breast cancer - unrelated to each other - and she would always comment on how much attention was given to breast cancer and nothing, literally nothing was mentioned about gyn cancers. In fact, she was a five-time cancer survivor beginning with Hodgkins in 1959 when she was 23 years old.

[I] am approaching the one-year anniversary of her passing and I wish she could have known about this group and this documentary. She would be so happy in her heart. 

Hearing about this today warmed my heart while at the same time brought up a huge groundswell of emotion.

She passed away at the age of 76 last Nov. 16. She had a stroke three years ago and it robbed her of her ability to walk on her own and of her independence. Her hip had fractured in 2007 as a result of the radiation from the vulvar cancer - the radiation apparently killed the blood supply to the hip (not to mention the other problems caused by the radiation).

A compression fracture in her lower spine is what sent her into the hospital last year, and the belief is the radiation did so much damage to the blood supply to her bones that ultimately perhaps the treatment took her life. Even though the cause of death was listed as aspiration pneumonia, I guess the cancer did take her life although in a different sort of way. Kind of crazy. Although -- she did have eight years of watching her two grandchildren grow up and there was much joy amid the health problems and sadness.

I always hoped to be able to find some outlet to share her story.

I haven't written the book yet ;) but through this band and the documentary, the story - although not about my mom specifically - is being told. Please let these doctors know they have touched me so very deeply today, in a way no one can quite imagine - yet I suspect they will understand. 

I also would be happy to share my mom's journey with any other woman or women who are diagnosed with this specific, ugly disease.

Thank you for making the documentary.

Just. Wow.
Thank you.

Cara Fogarty

Why haven’t I heard any of this before?

by Caralyn Moore

I am a young, reasonably healthy woman. However, I’ve had a recent realization of just how little I really know about my body. When I started working at Spark Media last Spring, one of my first tasks was helping to wrap up production on No Evidence of Disease, our GYN Cancer Awareness-Rock Band documentary. I was thrown suddenly into the world of GYN Cancers and all I could think was ‘why haven’t I heard any of this before?’

The first time I watched the film, I went home with a nagging hypochondria. There were a plethora of symptoms that I never knew existed and they sent my mind reeling. ‘My mother is a breast cancer survivor, ovarian cancer is a serious risk for me!’ ‘I had weird cramps yesterday, what if it’s too late?!’ Am I crazy? A little. Is it possible that I might someday develop GYN cancer? Absolutely. That’s the point. What you don’t know can hurt you, and women have every prerogative to educate and empower themselves.

So even as we tie the bow on the film, it’s really important that we continue to discuss its themes of awareness and activism, and spread the conversation about women’s cancer and women’s health. More women need to talk about the reality of GYN cancer, because it is prevalent, tragic, often preventable…and unfortunately not a commonly broached topic.

Our involvement with No Evidence of Disease has also led us to become involved in the creation of the first ever Globe-athon, a truly awesome effort to raise awareness worldwide for GYN cancer. 

The work we are doing here at Spark gives me hope, and inspires me not only to be conscientious about my own health, but also to live passionately and reach out to other women. This is what it’s all about. Empowered women are those with the knowledge, the support, and the gumption to be strong and achieve their goals, beyond the grasp of cancer. Life is too short and too precious to leave it all up to chance. It’s so important to know that there are people out there fighting for women: for their health, life, fulfillment and success.

So here’s a shout out to the strong men and women in N.E.D. and everyone everywhere else who has been touched by GYN cancer. Keep the conversation going!