RFA through the years!

In anticipation of the 4th Annual Running for Answers Event in Philadelphia next week (which I am so excited for!), I am going to remember in today’s blog, some of the milestones of this beautiful race and journey for me.

This week I found a few photos and documents that made me smile at the journey this race has been and I was humbled by the reminders of the remarkable support I’ve recieved on this journey.

Below I am sharing with you an email I found from 2009 that asked my friends and family to support me in year 1 of “Running for Answers” (a half marathon I ran in Philadelphia) – and to check out the BLOG (uhem) I started!  I am also found the original stick figure my then 5 year old nephew, Ethen, drew and emailed to me from Oklahoma and finally some pictures of people that have offered incredible support over the years.

I am excited, humbled, grateful and…..ready to see everyone in Philly this weekend.

If you cannot join us in Philly this year, please consider giving to RFA:  http://www.firstgiving.com/fundraiser/serasnyder/runningforanswers

In love and healing,

Sera

Ryan and I preparing for PDR 2009.  I wouldn't have finished this without him (or finished it so gracefully without him)!

Ryan and I preparing for PDR 2009. I wouldn’t have finished this without him (or finished it so gracefully without him)!

Ready to Run! I was so excited!

Ready to Run! I was so excited!

2009 Plea to support my “running idea”

It’s been eight months since I heard the dreaded words, “the biopsy is back.,Sera, you have a desmoid tumor.”  I remember like yesterday throwing the phone across the room when I heard the dread words, tears streaming down my face, looking at my father hoping he would tell me it wasn’t true, but for once there was nothing he could say, nothing he could do to save me from the surgeons words or to keep me from going into the operating room.

It was November 2008 when this journey began.  At 26 years old I was in the best shape of my life.  I was preparing for my 3rd half marathon of 2008 when a precautionary doctor’s appointment (for what I thought was a strained muscle) turned my life into a nightmare.  I had no idea what the coming months held for me.  The MRI, my first appointment with the surgeon, telling my friends and family it’s all a blur to me.  I was lost, confused, angry, scared, and didn’t know where to turn.  Many of my friends and family felt the same way.  This rare, yet benign tumor that doctors were suggesting I had was hard to find any information about.  There weren’t many surgeons that knew how to treat it and there weren’t many options of trying to get rid of it.  After long days and sleepless nights of searching the internet, the library and local books stores, it was the Desmoid Tumor Research Foundation (DTRF) that became our lifeline of information.  They had access to everything available about this horrible tumor, which unfortunately isn’t a lot.  They were also a source of support for me by helping to connect me with others who were battling desmoid tumors. 

DTRF taught me the facts about the lump forming in my stomach:  Desoid tumors are rare, aggressive tumors that arise from connective tissue.  Without removal of the tumor and surround margins, they can grow into and even destroy adjacent normal tissues, vital structures, organs, even bones.  It is estimated that only 2-4 million people in the world are diagnosed with these tumors annually.  Currently, the cause of most desmoid tumors is unknown.  When feasible, the tumors are surgically removed, however, 25 – 40% of patients that undergo surgery can have a local recurrence.

I also learned quickly after visiting DTRF website that I was a “lucky one” in the desmoid community.  Because the tumor was in my abdominal wall it was a fairly easy area to operate (unlike your elbow, knee or neck) and because my surgeon was able to diagnose the tumor early on we knew to take margins (5 cm of my abdominal muscles) around the tumor so that my reoccurrence rate was lower.  Unfortunately, there are many demoid patients that either did not get clear margins taken or they have tumors in areas that are difficult to operate on.  Due to this they fight constant reoccurrence – going through repetitive surgeries, a variety of drugs, radiation or chemo – or they live daily with the tumor trying medications to keep it at bay because it cannot be surgically removed. 

Six weeks ago I survived my first clean catscan post-surgery (YAY!!) and I knew one thing when I walked out of the surgeons office – I never want to go through reoccurrence.  I never want to go through surgery or this awful recovery again.  I want all the answers I can get about desmoids to be sure I am as careful as I can be.  I want to help the children, woman and men that fight reoccurring tumors everyday – going through awful surgeries, taking horrible medications and enduring chemotherapy.  I need to support DTRF to get these answers.

Before my first surgery in December I vowed to myself that when I got through the surgery and recovery period I would run a race for DTRF and do what I could to help advance the research for desmoid tumors.  The recovery has been a lot longer, more painful and frustrating than I had ever imagined, but with determination, perseverance and faith I am ready to prepare for this race and run for all of those fighting desmoid tumors today. 

As I embark on the difficult task of getting back in shape for this half marathon, 3 abdominal muscles short, thanks to my surgery, I ask for your support by donating to this cause.  Please join my fight for answers, for information and for health by donating to the Desmoid Research Tumor Foundation.

Follow my journey on my blog:

Find more information about Desmoid Tumor Research Foundation at:  http://www.dtrf.org

Thank you for your generous donations and support of my health and my future.

~Sera Fiana

The stick figure Ethen sent me when I asked him to design something that reminded him of me for my race.

The stick figure Ethen sent me when I asked him to design something that reminded him of me for my race.

My parents, always there:

Mom and I at U Penn, post surgery #2.

Mom and I at U Penn, post surgery #2.

My Mom - always standing beside me.

My Mom – always standing beside me – here at RFA year – the half marathon.

mom.sera.2011

Mom and I at the RFA finish year 3

Mom and Dad at RFA the 5 miler, 2010 (Year 1 of the race we know now)

Mom and Dad at RFA the 5 miler, 2010 (Year 1 of the race we now know as RFA)

Dads always been here!

Dad has always been here! Year of the RFA half marathon for me.  Little did he know he’d start running with me soon!

Dad finishing 5 miles at RFA  year 1!!

Dad finishing 5 miles at RFA year 1!!  His 1st EVER race!  what a champ!

ryan.3

Ryface and I after year 3

sera.yr.1

Year 1 – speaking at the start of the 5 miler

year 2

Year 2 – our DTRF Team

year 3

Year 3 – the DTRF team gets bigger!

year.3 gals

Year 3 committee!

gals.1

Year 1 – part of the committee! We had no idea what we were doing this year 🙂

Year 2 - the committee!

Year 2 – the committee!

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