Service is Joy

“I slept and I dreamed that life is all joy.  I woke and I saw that life is all service.  I served and I saw that service is joy.”  Kahlil Gibran

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Los Angeles Virtual Sarcoma Slayers at Santa Monica Pier

There are times when the prospect of writing about an experience seems so large and daunting….when you know that you do not have the adequate words or writing skills to convey what an experience has meant to you and how it has impacted you… That knowledge of your inadequacy can make you not want to write down the experience….not knowing where to start.  That is how I feel about writing a summary on the Slay Sarcoma 5K.  But you, my readers, where so incredibly supportive of my cause, that I know that I owe it to you to try my best to say something….. so without over-thinking it, I’m just going to start…..

On Saturday October 17th, my family did the Slay Sarcoma run virtually from LA.  I’ll start with some summaries and then give you some race highlights.  For starters, thanks to you reading and sharing, the post Stage 4 about Amy Reed got read at least 20 times more than any other post I have written….awareness was definitely raised.  I had 120 people register on my team, of which I only personally know about 40.  The other 80 where from readers sharing my post.  Moreover, I got repeated emails and texts from people telling me about women they know having fibroid surgery who are being offered morcellization, and being advised by you the readers to research further before consenting.  Last year, $30,000 was raised for sarcoma research.  Preliminary results from this year are close to $70,000.  At the end of this post, I’ll have pictures of some of you fabulous slayers across the U.S.

As for some personal race highlights, I’ll have to choose a few of the many.  My kids who are 14, almost 12, and 9, knew that we were doing a 5K well in advance, but they hadn’t really thought about it and were assuming it’s another one of mom’s runs that she is making them go on.  In the car ride down to Santa Monica, we had a family conversation about cancer and leiomyosarcoma(LMS), about Amy’s family being the organizers….that my oldest son and Amy’s oldest son were born within months of each other and have a baby picture together propped up on a couch.  We talked about the morcellator….we talked about Amy’s unknown prognosis….we talked about 85% of women with stage 4 LMS dying within 5 years.  My daughter got very tearful in the car…”I wish you hadn’t told me.  Now I’m so sad.”  But they needed to know why we were running….  My little girl, who doesn’t like to run, did end up running almost the entire course with very little walking breaks… she gave it her all and told me, “I’m glad that I’m running today because I feel like I may be helping save someone’s life.”

Another highlight of our virtual run in LA was that we had a young lady whose mom had a LMS that was upstaged due to the use of a power morcellator join us.  Her mom testified at the FDA hearing on banning the morcellator, and her parents both participated in the run in Yardley with Amy and her family.  I was so touched and honored to have someone who was so directly impacted by this cancer and the morcellator on our virtual run.  Her presence there was a reminder that what we think is rare is likely more common than known, and once we become aware of an issue and start talking about it to others, I bet we will all find someone we know who has been affected by this.  I thank her for joining us.

Also touching was the outpouring of messages, emails, texts, and pictures that I got from you.  It was as if it was my birthday and Facebook had sent everyone a reminder to wish me a happy birthday….but instead I was getting tagged on Slay Sarcoma posts with runners in their shirts.  I got a message from a fellow blogger Teresa who read my Mile Shortage post and in her race that weekend dedicated one of her miles to Amy…. to think that so many of you thought of her on that day…  I felt it…Amy felt it… I can’t thank you enough for it….

One of the greatest highlights….. is my connection with Erin from Adventures in Thumbholes.  Erin just came across the Stage 4 post on her twitter and it stopped her in her tracks.  She made it her personal mission to spread the word.  She invested as much time if not more than I did in gathering virtual runners.  She tweeted about this run more times than I could keep up with without losing my day job.  She made little slay sarcoma cards (see picture below) with links to the change.org petition that she mailed to me and to her friends to hand out to passers-by during our run.  She was moved and she took action beyond anything I would expect.  I haven’t met Erin, but I know that I have a friend out there in her.  I know that she is passionate about everything she believes in.  I know that if I need help with a cause in the future, Erin would be the person to reach out to.  I’m not sure that you can put a value on making a connection like that.

After the run, we were able to FaceTime with Amy and Hooman and their extended family and friends.  They have been so appreciative of what we have done and repeatedly referred to my husband and I as “superstars”… We are not superstars by any means, but Amy and Hooman are.

Most of us can’t even begin to imagine what it would be like to have our life suddenly turned around with one phone call.  Most of us are not faced with having to look at our bucket list and not only un-pause it, but have to sprint through it at an unbelievable pace because we don’t know how much time we have left.

While the rest of us will remember Amy and have a bell of recognition go off in our minds when we hear the term “morcellator” or “leiomyosarcoma”, and while my husband and I will continue to do what we can to be an emotional support for them, we will go on with our day-to-day lives and my journey to 26.2.  They will continue to invest everything they have in their battle against the FDA and in raising funds for sarcoma research; Amy will continue to fight her cancer.

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My family at the LA slay sarcoma run

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A picture of the run in Yardley, PA

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Virtual sarcoma slayers Amy Broyles, Eboni Dugas, and Diedre Dugas-Booze in Camp Lejeune, North Carolina

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My 9 year-old daughter giving it her all, as she is happy to be helping make a difference

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The slay sarcoma cards that Erin from Adventures in Thumbholes made and mailed out to me and her friends to pass out during their virtual runs!

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Julie Lee; one of my sarcoma slaying readers with her husband Robert. They did the run from Elizabeth City, North Carolina. Julie signed the change.org petition and has shared it on social media multiple times…. I thank you.

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My friend Marjon slaying sarcoma in LA.

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Another friend of mine Julie, who may have been going on vacation, but still took her shirts to Myrtle Beach and did the run on vacation with her husband Andy.

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My friend Sandy, with her son in Ithaca, New York.

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Virtual runner Alexandra Lockridge with her kids in Panama City, Florida

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And lastly, a banner that was at the run in Yardley, PA, with pictures of women whose LMS has been upstaged by the morcellator; a closer inspection would show some with a purple ribbon on their picture in the corner. Those are women who have lost their battle.

**I received too many pictures to include them all, but you can go to slaysarcoma.com to see many more pictures, including pictures of Amy’s family on race day.  We will all come across many women who will be having surgery to have fibroids removed, and many of them will be offered minimally invasive surgery with the morcellator.  Please remember Amy and the women on this banner.  Please urge them to make an informed decision.

For those of you leaving a comment, we all have a charity or cause close to our hearts.  Let me know yours…. I’d like to learn more.  Thank you.

 

 

 

 

 

 

 

About Paria

Runner, mother, pediatrician, blogger

17 comments on “Service is Joy

  1. WOW! This is just so, so amazing!!! Unfortunately I did not get my shirt in time to wear it to Runner’s World but I’m bringing them all to NYC so we can take some pictures at the marathon and I will absolutely be dedicated several miles to the cause! You have really made such an impact and should be proud of the lives you have touched and possibly saved. Just amazing!!!

  2. Paria jaan this may be my favorite of a your posts. Got teary eyed reading it on subway today on my way home. So beautiful to read about how people (friends and even strangers) came together to do the right thing and support something that vitally needs supporting and increased awareness. Send you photos soon…they got stuck on Gs broken phone camera. Still trying to retrieve…

  3. I’m so fulfilled that you wrote a post summarizing the day’s highlights. The outreach and support is amazing to read! Including you sharing this with your kids and having the talk so they’re aware as well. This is the kind of stuff that should go viral on social media.

    My intention was set that weekend for Amy and her family. The timing could not have been more perfect. That weekend fell on India’s most celebrated holiday called Navaratri- the 9-nights of the Goddess.

    What’s the Significance of Navratri?

    During Navaratri, we invoke the energy aspect of Spirit in the form of the universal mother, commonly referred to as “Durga,” which literally means the remover of miseries of life. She is also referred to as “Devi” (goddess) or “Shakti” (energy or power). It is this energy, which helps Spirit to proceed with the work of creation, preservation and destruction. In other words, you can say that Spirit is motionless, absolutely changeless, and the Divine Mother Durga, does everything. Truly speaking, our worship of Shakti re-confirms the scientific theory that energy is imperishable. It cannot be created or destroyed. It is always there.

    Our training included a puja ritual complete with an altar, offerings, and worship. My reverence was specific to Durga (“the goddess who eliminates sufferings”) and Saraswati (“the goddess who knowledge, wisdom, learning, creativity”). I thought with these 2 goddesses on Amy’s side, it’s a win-win, for everyone.

  4. This is amazing. What an incredible thing to see this all come together. And your daughter’s words – I often shy away from sharing the hard stuff with my kids but you’re right. They do need to know and to see how their actions can help create change. Love this.

    • Thank you so much Christine….the kids do need to know the hard stuff as they get a little older… and she felt such a sense of accomplishment at the end on that day.

    • Thanks Wendy…for participating and helping spread the word… and hopefully eventually enough women will hear the dangers and question their OB’s enough that it will eventually be eliminated.

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