The details…

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As I start to share this blog with more people I realized recently that I need to take a step back and share a little more basic detail. I want to share more about the specifics – where I am, what is happening and why I started writing again.

Most of you know of my journey with my desmoid tumor (Zelda) 4.5 years ago in my abdomen. (To learn more about this go to the origin of this blog – first original posts) When they removed this tumor in 2008 they removed a 5 cm radius of my lower left abdominal and oblique muscles and put my stomach back together with a synthetic mesh to help it rebuild and form together – (since muscle never grows back). What has happened since then, we believe, is that this mesh has broken down and is no longer holding my stomach in place as we had hoped. This could be from my active lifestyle, could be that the mesh never being placed correctly from day one, could be a defect in the mesh or it could just be a breakdown that happens over time. Essentially, what we believe I have at this time is a complex hernia in my abdomen, causing it to bulge out and cause me a lot of pain.

I was fortunate to find a surgeon in Texas that has experience with patients of desmoid tumors that can do the difficult abdominal reconstronction that we believe I am need of. It is important that he has experience with desmoid patients because any trauma or inexperienced cutting/ect. could cause my desmoid to grow back. Reoccurance is something we always have to keep in mind with desmoids. Also, the surgery that removed my desmoid and the 5 cm radius is rare and it is important for a surgeon to have experience seeing these types of prior cuts.

So where we are now is that the surgeon is in Texas, so I have had a phone consult with him and I am scheduled for an in person appointment with him this Friday. Since he has not seen me we can not confirm this is what is going on, but symptoms lead us to believe it is. After a physical in person exam and conversation, I hope to be cleared for surgery on Monday, July 15th. We cannot know until I see him in person if 1. a hernia is what I have and/or 2. if it is, that he can fix it via surgery.

So, at this point, I am asking for prayers for my travel to Texas this Friday with my family. Prayers that this doctor has answers for the questions/pain that I’ve been living with for the past few years and that if surgery is the right next step he is the right person to perform that. I am heading to University of Texas at Southwestern. I am so very lucky that most of my immediate family (minus one very special person) will be there with me.

I have had another amazing week of gifts from friends and family and more amazing connecting through my Church and those that I meet there. God is working miracles in my life right now, teaching me more about faith and hope and trusting open doors.

One of the gifts I received over the last week I’d like to share with you here…. a song that I heard and feels like an anthem for me right now. For those of you that know me, you already know I love India Arie and ironically (or not) she came out with a new cd around the time of my last surgery and recently came out with another (amazing!) cd this month that I have already listened to (entire cd) at least 5 times!
Enjoy:
http://www.oprah.com/own-super-soul-sunday/IndiaArie-Performs-Break-the-Shell-Video

In love and healing,
SFS

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