“Life, love and light.” My wife, Jennifer Whitaker, started signing correspondences with this phrase sometime in early 2015. It seemed so simple at the time, a nice way to end a note. I don’t think I completely understood what she meant though, until after she passed away a few months later…
Jennifer had fought sarcoma for nearly four years (and she had already beaten it once before). When she died I asked that instead of flowers, donations be given to the sarcoma centers that treated her, including Levine Cancer Institute. That’s how I came to meet Sue Udelson and to learn more about The Paula Takacs Foundation for Sarcoma Research. Sue wrote the nicest notes offering condolences and thanking our family for supporting the Foundation. I immediately felt a connection to Sue and the Paula Takacs Foundation. I found out that she had lost her brother to sarcoma, and then her friend Paula as well. I was touched by their stories and amazed at what they created.
From what I have heard about Paula, I believe that she and Jennifer would probably have been friends. They seem to have had a lot in common. Both had beautiful smiles and warm spirits that seemed to radiate genuine kindness. I’ve heard Paula had a great sense of humor, and so did Jennifer. They both seemed to be determined to have fun and laugh despite what they were going through. I understand they both reached out to people, to spread joy and love. They both wanted to help others and they fought for this despite all they were going through, Jennifer through her work as a clinical social worker and Paula through the establishment of her namesake foundation. There was joy and gratitude for each day, for life and for love.
I signed up for the 2016 Sarcoma Stomp and formed Team Jennifer. I was searching for anything to honor my wife and her fight, to somehow make a difference.
From my experience participating in the Sarcoma Stomp, I came to understand that “life, love and light” was everything Jennifer stood for. To live fully, to love sincerely and deeply, and to find and spread light, especially in darkness. It was everything she was fighting for. And now I think it’s also what she wanted for us in her absence. I also saw “life, love and light” in the Paula Takacs Foundation. I continue to see it in the patients, families and medical teams fighting sarcoma. It fills the air and our hearts at the Sarcoma Stomp and I see it in their photos of the other events. I can feel it in the PTF correspondence.
Several months after my first Stomp in 2016, I attended the annual gift presentation by PTF to Levine Cancer Institute. Dr. Edward Kim, Chair of Investigative Therapeutics, spoke about the amazing work being done as a direct result of the PTF’s efforts. We all know there are few treatment options for sarcoma, but here was research leading to new and promising advances in treatment. It also hit me at that presentation that the researchers are using tissue samples of patients from Levine, and that one of these samples had to be Jennifer’s. I left through the same halls Jennifer and I had walked a year before to get her last treatments, now knowing that Jennifer was still making a difference by expanding hope for her fellow sufferers.
And so through the work of the Paula Takacs Foundation, my family continues the fight against sarcoma. I am so grateful to Paula for creating this foundation, to Sue for her tireless work to continue Paula’s legacy, and to all of our supporters. Together, I know that through the funding of more sarcoma research we are finding “life, love and light.” Together, I know that we are making a difference.
It was June 2009, and a big day for me. I had just returned from the car dealer, having closed one of life’s chapters by trading in my ancient mommy van for a gently-used, lightning-fast sedan. I stared in glee at my sparkly red machine, reveling in my happiness over finally graduating from those clunky, manual sliding doors. Oh, and not to mention the absence of that huge DVD player and TV combo that we strapped down with bungie cords to the captain’s chair anchors for road trips with the kids — which rested atop the chewy snacks and dog fur that were forever glued to the chair tracks. It was a new dawn for me in this next phase of life, behind the wheel of a car that was not filled with lunch remnants, dented from new teen drivers or required extensive wiring to play something more than a cassette. I had arrived, I thought.
Until the phone rang and I heard the word “sarcoma” being uttered by my brother for the very first time…
Since that day I’ve learned, through my brother’s fight against sarcoma, what it means – in harshly realistic terms – to not only be stricken with a cancer diagnosis, but to be victimized by one that had so few treatment options. I saw firsthand, at every post-scan appointment, his gut-wrenching cries from the devastation of knowing that the cancer was growing wildly. I saw the eyes of a man, who once had a smile that lit up every room, be reduced to reflective pools of a crossroad between immense courage and haunting fear. I was constantly gripped with terror in the race against time in finding the answers he needed to regain his health. And ultimately, I watched in complete horror as his children wept and placed some of their beloved toys and blankets upon his slowly-rising chest.
It is through the witnessing of this unspeakable suffering of Alan, and then Paula Takacs, and learning about the harsh realities of this unrelenting villain, that drove my decision to take the helm of the Paula Takacs Foundation. So many people over the last two years have asked me to blog about my experiences as an advocate, caretaker, sister, and friend, so that our supporters will get to know me better. To be frank, I’ve been relentlessly conflicted about it. On one hand, it would give an “insider’s view” of this disease for those who have not been sadly acquainted, so that they would clearly understand and appreciate the dire need for research and treatment options. However, I think about the many, many families that are part of our foundation family now, and how my no-holes-barred recounting of hell would upset them and bring back their own demons. And so, regardless of the catharsis it might afford me or the popularity I might gain in the world of cancer blogging, I simply cannot do it. Some may say I am wrong, but I’m at peace with it.
I will, however, write from time to time about the special moments and hilarious predicaments that I will always treasure in the year I spent with my brother Alan. Those are the stories he’d want me to tell you – the one’s that brought tears of unbridled joy or the ones that caused that kind of laughter when your sides ache. That’s what he’d want. And that’s what Paula would want.
Volunteer Camine Pappas has donated countless hours to the Paula Takacs Foundation. She serves on our Marketing Committee, helping to craft the messages of hope and impact that reflect our mission. Camine designed our website as well as every digital and print marketing piece for the annual Sarcoma Stomp. We are forever grateful for her dedicated and passionate volunteerism to help our nonprofit grow to the next level. Listen to Camine as she explains why she believes in the Foundation and its future.
We hope that you’ll join also us as a volunteer by clicking here. As volunteers continue to join in, we will be able to hold more fundraising events– accomplishing more and more on behalf of sarcoma sufferers!
Guest Blogger: Julia McGrath, Leiomyosarcoma Warrior!
(Pictured left to right: Amy Virkler, Sue Udelson, and Julia McGrath)
Finding joy in a cancer diagnosis is like finding the “blessing of a skinned knee”, which is also the title of a wonderful parenting book by Wendy Mogel. How could a parent believe that a child’s skinned knee is a gift? A blessing? How could cancer ever be a gift? In the book, Mogel explains that these sorts of painful occurrences give opportunities for tenacity, flexibility, optimism, and compassion. And so it is with cancer – and I know all too well as a sarcoma survivor.
On Saturday, September 10, Carolinas Healthcare System’s Levine Cancer Institute hosted its annual Cancer Survivors Day. There were many “skinned knees” in attendance, but there was a sense of positivity nonetheless, and the Paula Takacs Foundation (PTF) was a proud exhibitor at this special event.
The PTF showed tenacity in the sweltering heat with a disco-themed booth, polyester and all. Visitors posed for photos with disco props and folks of all ages made their very own pet rocks to take home. There was a pervasive attitude of compassion and optimism. Survivors participated in lots of activities — designed to give love and hope to those who have struggled as well as those who are currently fighting. All you have to do is look at the photographs to see there were blessings to be found. As a survivor with my own “skinned knee”, I was proud and grateful to be there.