My Painful Lesson in Awareness

In the very back of my file cabinet lies some seriously sacred territory – the many files documenting my brother’s medical history before sarcoma, records reflecting his fight against sarcoma, and his death certificate. I don’t know why I have kept these papers 7 years later, except to say that I thought they may help someone else needing research info, fighting an insurance appeal or filing for disability…or for assisting in the preventive care of Alan’s 3 children as they grow up. And then I must admit there was the emotional pain of shredding the papers that defined the most devastating chapter in my life, and deciding that it was easier on my heart to let them stay put.

I made the decision to pull out these files today in honor of Sarcoma Awareness Month, because I know in my heart that I do have an important story to tell you and a valuable lesson to impart. And what monumental thing did I learn after the loss of my brother, you ask? Awareness can potentially save your life, and the lack of it may kill you.

Like so many young people suddenly stricken with sarcoma, my brother Alan was a healthy young adult. However, his first “bolt out of the blue” health crisis came not from sarcoma, but from renal cell carcinoma in 2000. Alan had some unexplained and sudden back pain. He got it checked out quickly, and to his utter shock he had a malignant mass in his right kidney. Alan had his kidney immediately removed and had no further treatments, because there was no evidence of metastatic disease. Our family felt so grateful for this outcome and breathed a huge sigh of relief. But what we didn’t know at that time was that the ultimate enemy was waiting in the wings — and would strike without abandon.

Alan began to have regular oncologic visits and scans of his abdomen and pelvis after that 2000 diagnosis to monitor for reoccurrence or metastases of renal cell carcinoma. All was well with his cancer status…until it wasn’t at all. The new oncologist wrote this in his report 9 years later, in July 2009:

“I had the pleasure of meeting Mr. Stoller today for further recommendations regarding the role of adjuvant radiation therapy in the management of pleomorphic rhabdomyosarcoma of the right upper extremity, status post resection with evidence of biopsy-proven lung metastases. He is a charming 46-year-old gentleman who had a mass in the right upper extremity for approximately 10 years. This had been deemed to be a lipoma. However, after bringing this to the attention of one of his other physicians, the prompted an MRI on May 28, 2009. This revealed a 5.4×5.8x10cm inhomogeneous mass….”

What I will NEVER understand was why there were no physician notes about a significant lump on his bicep that was present THE ENTIRE 9 YEARS POST KIDNEY CANCER. Was anybody concerned about its mere presence in the backdrop of having had renal cell carcinoma? Were these oncologists familiar with sarcoma and what to look for? Was there such a complete lack of awareness on the part of every physician that saw my brother during that decade that no red flags were raised?

Let my brother’s tragic passing remind you to know your body, to question something that doesn’t seem right, to insist that your doctor take a thorough look, and to relentlessly be your own advocate. May it serve as a startling reminder that lumps, swelling, and pains need to be checked out thoroughly. And I mean THOROUGHLY. A two-second palpation of a lump on the arm of a cancer survivor doesn’t suffice as a lipoma diagnosis, in my humble opinion.

I will never know if Alan’s death would have been prevented if his physicians had been more thorough in their approach to his longstanding arm lump, or if he had insisted on a resection or biopsy 10 years prior to his sarcoma diagnosis. But what I can say with certainty was that the epicenter of this tragedy was a blatant lack of sarcoma awareness on everyone’s part. So I hope you’ll send this story to everyone you love with a mysterious lump, swelling or pain and implore them to take action. I hope you’ll share our foundation’s sarcoma awareness content on Facebook and Twitter not just during July’s Sarcoma Awareness Month, but throughout the year. It is my sincere prayer that we can work together towards a smarter tomorrow regarding sarcoma awareness. Many lives will depend on our diligent voices.

With love, light and hope,

Susan

Our Joyful Sarcoma Stomp

By Sheila Mulcahy-Bell

The journey may be harsh, but in the end I pray many are able to stomp out sarcoma.

I knew nothing about sarcoma until an acquaintance of mine told me she had it and is now cancer free. When people think about cancer they think of the more “popular” cancers. Sometimes I think cancer gets swept under the rug when it comes to discussing the less “popular” ones and sarcoma in my eyes is one of them. I am joyful for the experience my family has had in learning about sarcoma through our participation in the 2017 Sarcoma Stomp, and in helping to try to raise awareness and money to find cures. 

When we found out about the Sarcoma Stomp 5K, I knew I wanted to participate. What I didn’t know was that 5 out of 6 in my family would join in! (The 6th was there in thought, but a 5K isn’t her thing.) It was a delight to be able to join Julia’s Jamboree team to STOMP out sarcoma. Something I didn’t expect was that this event would also lead to our family agreeing they all wanted to do more 5K’s to raise awareness and money for more organizations. Most may think that this is no big deal, unless you have the “couch potato” thing going on in your family like we do. So I am proud and joyful about this new commitment!

Sometimes in life we get too busy — and forget to stop and think about what others are going through and how much they need prayers and a cure. I look at Julia and I am grateful for her strength and courage to have fought and beaten sarcoma. It has been an eye opener for me to remember to appreciate any time I have with family and friends, and the Sarcoma Stomp was just one more way I was able to spend time with them.

I am glad I was able to support the cause to help find cures for sarcoma. I look forward to the next Sarcoma Stomp event and hope that in the near future there will be cures. 

Sheila

Life, Love and Light

Lovingly penned by Alex Whitaker (Team Jennifer)

“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. 

Rockin’ Wendie and Rainbow Wigs

I’ve wondered for a number of years now who Rockin’ Wendie was and I always admired Team Rockin’ Wendie’s Warriors at the annual Sarcoma Stomp. Tonight I finally found out in an email from Wendie’s sister and it felt SO good. Why? Because she didn’t just explain why this team shows up at the Stomp each year donning rainbow wigs, smiling brightly, and lighting up the course with their smiles. Heather told me the story of a woman so beloved, not only by her family and friends, but also by thousands of elementary school students learning the value of character traits through her music and dance.

“We are looking forward to coming to the Sarcoma Stomp once again this year,” says Wendie’s sister Heather Mitsopoulos. “We will be there with our wigs in tow!  I don’t know if I’ve ever mentioned why we dress up the way we do, but my sister who had Sarcoma, Wendie, used to film these character trait videos that would get played in local elementary schools in Macon, GA where she lived.  She played a character called Rockin Wendie and her co-star was Poppin Pj (a close family friend who wore a mohawk during the videos).  Chick Fil-a was working on a contract with my sister to use the videos in their marketing materials, but unfortunately my sister got too sick to continue filming.  The elementary age kids that the videos went to never knew she was sick or didn’t have any hair because she wore her wig.  🙂  So, we honor her memory by dressing up as Rockin Wendie and Poppin PJ!  She joined us for 1 of the Sarcoma Stomps a few years ago and got to speak with Paula…shortly after that Sarcoma Stomp both Paula and my sister passed away.  The Sarcoma Stomp falls usually within a few days of my sister’s b-day, so it’s a celebration of her b-day for us!”

Thank you for writing about your awesome sister, Heather! There is no doubt that the stories behind the mission gives this foundation texture and soul. And Wendie sure did have soul! :-)))

Click this link to watch a Rockin’ Wendie and Poppin PJ video: https://www.youtube.com/watch?v=f120n1K2CfU

Click to see a news story about Rockin’ Wendie and Poppin PJ: https://youtu.be/hOHL-C5eKe0

If you’d like to join the Rockin’ Wendie’s Warriors team, either in-person or as a Virtual Stomper, click HERE.

If you’d like to donate to the Rockin’ Wendie’s Warriors team, click HERE.

Defining “Cured” from the Sarcoma Trenches

By guest blogger and sarcoma survivor, Julia McGrath

It didn’t take me long after being diagnosed with sarcoma to come to the conclusion that cancer terminology can be really confusing. But here’s how I choose to see it…

Most folks gather with their friends at the local coffee joint to have light conversation, but when I see my fellow cancer survivors we might discuss things like the terms “cancer-free”, “in remission”, and “cured”. Through our conversations, it was apparent that the survivor, the oncologist, friends and family use the terms differently and at different times.  Doctors treating sarcoma patients tend to celebrate NED (no evidence of disease), sight the statistics, and say that a patient is “in remission” because sarcoma cancer does often come back. Friends and family might say that once a removal surgery takes place or chemotherapy is finished that the cancer is gone, and feel that it is gone forever. But as one of those patients I debate in my own head about when a sarcoma patient is considered “cured”, because that’s the elusive term in sarcoma we’d all covet to use. I have tended to stay somewhere in the middle thus far in my journey — I know the cancer can return, but I focus on the positive. So in that middle space, should I tell everyone I am “cancer-free”? How do all these terms feel to those of us who have been diagnosed, whether in or out of treatment? How does that play into our emotional state and stress levels?

According to scientific data and terminology, I am in complete remission because no new cancer has been detected since its removal in October, 2015. Am I “cancer-free”? And when am I “cured”? CT scans cannot detect small cells. And I know that statistically, my sarcoma -if it is going to return- will most likely come back in 2-3 years. But from what starting point? Is it 2-3 years from the surgery, when it was removed, or is it 2-3 years from when I ended treatment (in my case, chemotherapy), about 6 months after the surgery and clear scan? Confused yet? I know many of us are.

After all, my oncologist gave me the option of doing one round of treatments (six cycles, each lasting 21 days). I could have opted out. But I asked myself–what if there were loose cancer cells floating around in my body that the scan had missed? How could I be sure I was truly “cancer-free” without a little chemo? Should I less confidently say I am “in remission” and then wait and see?  

Now I visit the radiologist every six months for a scan to see if any cancer large enough to see has returned. I anxiously await the call from my doctor saying that everything looks good. I know I will feel much relief when I can theoretically ring the bell and announce that I am FIVE years clear. Five years in the world of cancer generally means you are “cured”, though there are never any guarantees – especially with sarcoma.  

Until then, I take one day at a time and look forward to the future as “chunks” of time. I will say I am doing well — I exercise, plan family activities and attempt not to think about it. I try not to focus on how I define my cancer state, or dwell in the anxiety that walks next to me 24/7 in the reality of these terms and statistics. Every day that I wake up and believe that I am “cancer-free” is a day I am very thankful.

Please join me in celebrating sarcoma survivorship, however you personally define it, by registering for the April 29th Sarcoma Stomp!!! Click here to register for my team, Julia’s Jamboree, whether participating in-person or as a Virtual Stomper. Or, click here for more information.

With love and hope,

Julia

The Paula Takacs Foundation for Sarcoma Research | Charlotte, NC 28271 | (704) 516-5113