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

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

No Rare Disease Pity Party Here!

My family and friends will tell you that I’m a data dork, learn-a-holic and question queen. I guess that is a compliment? 😉 Since taking the helm at the foundation, I’ve been doing a lot of thinking about whether raising funds for a rare disease is more difficult than a mainstream one. I find it mysterious that total private philanthropy for sarcoma is paltry in the US. Why is that? What’s the downfall of our disease space, and how can we do markedly better? Aren’t there enough donors out there who care about sarcoma sufferers?

Trust me and keep reading, because 30 seconds from now you’ll agree that we can feel encouraged by the whopping success of another rare disease’s playbook…

Sarcoma’s public relations hurdle #1: What the heck is it?

 It is a common nonprofit mantra that the key to raising funds for any cause is rooted in awareness. But what the heck does that truly mean? How does teaching the name of a disease name translate into donations down the line? Does imparting basic facts and statistics move people to open their hearts and their wallets? And, is fundraising success tied to disease incidence?

Just my opinion, but from my vantage point I think sarcoma may have a significant PR problem. Most people have never heard of it, have no clue what parts of the body it strikes, or understand how often it takes lives. Try finding a decent “What is sarcoma?” YouTube video. Maybe 3 in the world? Search Twitter for “#sarcoma” and see how many there are posts with that hashtag. Good luck. You can count on one hand most days.

Sarcoma is diagnosed only about 15,000 times per year. Do you find people have heard of it? Do you think the awareness issue is magnified due to the name of this cancer? After all, sarcoma is not named after a single body part, like breast, lung, colon, prostate, or pancreas. Its name does not give a hint that it is indeed a cancer, nor does the word help anyone visualize a body strike zone.

So have you heard of CF? Know what it is? I made a donation last year to the Cystic Fibrosis Foundation because my friend was fundraising for this cause. I knew that CF was a progressive, deadly genetic disease that causes persistent lung infections and limits the ability to breathe over time. And so, I opted to donate. In other words, I had heard of it and had some basic understanding of it. That certainly weighed into my decision to give the gift towards funding research, without having substantial knowledge of CF or knowing anyone suffering from CF.

I decided to look further out of curiosity, and was stunned to learn that CF is diagnosed only 1,000 times per year in the U.S.! And, only 30,000 are living with CF at any given time. (Under 200,000 diagnoses per year is considered a rare disease.) How did I come to be familiar with the name of this exceedingly rare disease? How did I have any knowledge about it? I have no idea!! Did my familiarity, as weak as it was, impact my desire to donate? Yes, absolutely!

Cause awareness – meaning familiarity of name and a basic definition – really matters in the world of fundraising.

Sarcoma public relations hurdle #2: Not enough awareness events means not enough public exposure

There are only a handful of organizations in the entire country devoted to sarcoma awareness and research, and only a short list of fundraising events. The national sarcoma organization is expanding from 5 walks to 9 this year (plus a few galas and patient education conferences), and was only formed in the year 2000. It is young!

Now look for cystic fibrosis organizations and you get tons, including the main CF Foundation, formed in 1955. So how big is CF Foundation given that the disease strikes only 1,000 times per year? The Foundation’s chapters hosted more than 1,000 events from coast to coast in 2015, netting $91 million. This includes more than 125,000 Great Strides walkers gathering in nearly 500 locations across the United and raising nearly $42 million. Mind officially blown.

I know that CF Foundation has a much longer history, but how has a disease that has an incidence of only 1,000 persons per year become so widely known and supported?? The very abbreviated answer is that they funded research extensively and eventually began their own affiliate to develop and test drugs. Some of these drugs became FDA approved and have extended life considerably for CF sufferers. It is truly an AMAZING nonprofit story which we can all learn from.

So, bottom line?

I think that this huge awareness deficit for sarcoma in the U.S. is costly in terms our collective ability to privately fund research, advance science, and ultimately improve survival rates. So how can we make a difference here in Charlotte, NC over the next few decades? Quite frankly, we’ve got to work hard, dream big and raise our voices. Can we continue to spread the word and become the largest run/walk for sarcoma in the US? Should we take the Sarcoma Stomp to other cities? Can our foundation one day raise millions per year and become one of the largest private funders of sarcoma clinical trials and research in this country? Can we become the gold standard? Can we become the role model?

Yes we can.

I want to read this blog post at my retirement gathering (lol) many years from now and hear the crowd audibly cheer as we celebrate our reach, our many milestones and the many curative treatments for sarcomas we have funded. Until then, we should not hide behind a rare disease pity party as a reason for not being able to raise substantial monies for research funding. Victim mentality always backfires. Let’s be more like Cystic Fibrosis in the decades to come. Think big, act big, be big!

So, tap the keys NOW to register for the April 29 Sarcoma Stomp, and let’s get that non pity party started… www.sarcomastomp.org

Ground zero, but my way…

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.

How do I prefer you to get to know me? Let’s have coffee together. Come to a volunteer meeting and chat. Introduce yourself at the April 29 Sarcoma Stomp.  And yes, I’ll be there with my now elderly red sedan – scratched, dented, and worn – but driven with mind-bending perspective.

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