Tag Archives: desmoid tumor

5 years…

This week is reason to celebrate.

5 years

Yesterday I was assured that my stomach looks great, my MRI scans were clear and I can…

CELEBRATE 5 years of no desmoid growth!

I had my scans, on Dec 5, the anniversary of my first desmoid surgery.  What a gift.

I dreamed a lot 5 years ago about how excited I would be today, how grateful and how happy I would be – and I am all these things, but, I have to be honest, I’m not celebrating and jumping from mountain tops as much as I thought I would.  I think the great realization is I’m not doing that because I’ve  celebrated throughout this entire journey.  Yes, its exciting and I am so grateful for this day, but I was also grateful and so proud of the journey that being a desmoid survivor has graced me with.

in.5.years

….I have grown into myself.  I have learned more clearly who I am, my strengths, my weaknesses, my opportunities.  I have embraced, grown and appreciated my community.  I have ignited a personal journey of reaching deep into the understanding of who am I.  I realized 5 years ago that I wasn’t living the life of the person I wanted to be.  I was angry and embarrassed, filled with shame, jealousy and resentment.  I was living in my own pity party pool and working to be who I thought everyone else wanted me to be (which wasn’t true) and I realized I needed to figure out who I, me, not anyone else, wanted me to be and how I could get there.  So, I started to change.  It hasn’t been perfect or always beautiful.  Its been exhilarating and inspiring and messy all at the same time.  

And this is the gift my desmoid gave me. 

The gift of blossoming into myself.  It gave me a platform of strength that I never had before – to be me – to change careers, evaluate the community and people in my life and ensure that they were aligned with who I wanted to be and leave some that didn’t fit and gain so many more that did, it gave me a new, incredible respect for this beautiful body of mine and, most importantly, it helped me uncover what I am passionate about – self-love, self-expression, self-acceptance, healthy nutrition and lifestyle, empowering patients in their care and educating the medical community that healing is more that surgery, medication and traditional treatments.

journey

I am smack in the middle of this journey and I have no idea where it is going to lead, but I am reminded today to keep celebrating along the way. 

This week, I celebrate my journey thanks to Zelda.

I celebrate my Mom, who completed her first chemo session with courage, dignity and a strength that confirms just where I get mine from.  She’s a healing rockstar.

I celebrate life and the journey that we are on.  I celebrate 5 years…and of course, I wouldn’t be me if I didn’t ask myself now…5 years.3

In love and healing,

Sera

My Campaign: Running for Answers

Please donate at: http://www.active.com/donate/sera_dtrf

Mind is everything. Muscle – pieces of rubber. All that I am, I am because of my mind. ~Paavo Nurmi

After spending the better half of 2009 battling back from the removal of a des moid tumor in my abdomen I am ready to take on a new, more exciting feat – running the Philadelphia Distance Run in September 2009 . Over the last 5 years running has become a major passion in my life. It provides me time to reflect on my day, work through challenges I may be going through in my life and it also grants me a great deal of pride just to know that even when I am feeling tired, sore or lethargic I can push through and run that next mile. The sense of accomplishment I get from running is greater than I have ever had in my life. This is why it is so important for me to find my pace and finish this half marathon after the most difficult eight months of my life.

I was diagnosed with a desmoid tumor in November 2008. After a series of tests, doctor’s appointments and a lot endless days searching theinternet, library and reference books, I realized there was not a lot known about this rare tumor, and consequently, there were not a lot of options of dealing with it. Due to the aggressiveness of the tumor it was imperative that I had it removed from my abdominal wall as well as 5 cm margins of my abdominal muscle to be sure all traces were gone. To say that this surgery and the pain following it was extremely traumatic for me is an understatement. Losing a part of your abdominal muscles (or any muscle for that fact), I have learned is a very painful, scary, frustrating process. After months of fighting through the rehab and recovery I still endure the pain that this surgery left me with, but I vow to work through this and be stronger.

I am running this race in part as a phase of my healing process, of getting my life and stride back and proving to myself that I can do this and in part to support and raise awareness for others in thedesmoid community that continue to battle these tumors. The recurrence rate is high for desmoidsand unfortunately many have been fighting recurrences for years, trying surgery, radiation, chemo and multiple medications to eliminate these terrible masses. We need more answers, we need more research, we need more awareness fordesmoid tumors. The Desmoid Tumor Research Foundation is devoted solely to the advancement of research for the desmoidcommunity. It became a lifeline of information for me and my family over the past few months and one of the only places we were able to find answers to our questions, fears and concerns.

As I embark on the difficult (yet very exciting) 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 the Desmoid Research Tumor Foundation on my behalf. Please join my fight for answers, for information and for health.

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.