Wednesday, September 28, 2011

Hey, anyone seen my fibula?

Just a quick post today. I have seen countless photos of my jaw over the last few years but this is my first post surgery photo for my leg. You can see how much of my bone was taken out. It is amazing that the bone that was once in my leg is now in my jaw.

So this is what my leg looks like...

Sunday, September 25, 2011

5k Run Today

As part of my ongoing training towards getting ready for my first half marathon, today I participated in a 5K run. It was the Virtua HealthFitness 5K in Voorhees, NJ. The hardest part for me was not so much if I would finish the run. I knew I could as I have been training on this very same course for the last four weeks. For me, it was the time that I would finish.

Using the run-walk method for the last few weeks has allowed me to finish a 3.1 mile course in about 40 minutes and 30 seconds or a 13 minute mile pace. Now that is a wonderful pace for a newbie like me. But when you are surrounded by runners who actually run all out, it can be a little intimidating. Makes me want to run faster and longer than I should for my level. So I have to run with blinders on.

It was fun and I finished at 38:43 or a 12:25 minute pace. A personal best.

Wednesday, September 21, 2011

Disneyland 1/2 Marathon 2010 Team for Life

I ran across this video from 2010 on the Lazarex Cancer Foundation YouTube page. Although the song was originally written about breast cancer, you can read about it here, it definitely echoes what I went through with ameloblastoma.

As the song asks, why am I running? Why am I trying to push myself? The answer is simple. It gives me strength. No matter what I have been through, no one will EVER take this away from me. I run for me. I run for life.

Please check out the video below. Watching this video touched me but it also energized me. I can not wait till January.

Saturday, September 17, 2011

In need of a little pixie dust...

About four years ago I started my journey with ameloblastoma. I met some wonderful people along the path. I will truly never forget the positive mark they have left on me.

Each of us has been touched during our lives by a friend or family member who has bravely battled various diseases whether it be heart disease, diabetes, cancer and yes, ameloblastoma. As a result of my experience battling my own disease, I have decided to give back. I have joined the Lazarex Cancer Foundation’s Team for Life.

As part of that team, I will be running my very first half marathon on January 29, 2012. I will be participating in The Tinker Bell 1/2 Marathon at The Disneyland Resort in Anaheim, California. Yes, my very first and yes I am a little scared. I have done 3 mile races in the past but never a 13.1 race. My goal, besides to cross the finish line, is to raise money and YOU CAN HELP! Your contribution is greatly appreciated. No amount is too small.

Lazarex Cancer Foundation builds a bridge to hope, life and dignity for cancer patients by providing financial assistance to defray the cost associated with patient participation in FDA clinical trials. Additionally, they help patients navigate their clinical trial options and provide community education and outreach services.

The money you donate will help Lazarex achieve their mission of providing resources for cancer patients who have been told they have no other options, but who are not yet done with their journey in life and refuse to give up. Lazarex believes that together we can build a bridge to hope for cancer patients.

Mission: To provide resources for cancer patients who’ve been told they have no other options, but who are not yet done with their journey in life and refuse to give up now.

My fundraising goal is $800 by January 5, 2012. Every dollar helps. Your donation will inspire me and help those who need it most.

Please follow this link to visit my personal web page and help me in my efforts to support Lazarex Cancer Foundation

Also you can visit my FACEBOOK page for this event here.

All donations to Lazarex Cancer Foundation are 100% tax-deductible.
Lazarex Cancer Foundation is a 501 (c) (3) non-profit organization

Thursday, September 8, 2011

I am done!

After nearly four years, I can now say I have a full set of teeth. The last phase on my reconstruction is over. I received my bridge. I do have to say it is a weird sensation. I have gotten so used to not having them that I keep forgetting to chew on that side. But when I do, it feels so artificial. Well, lets face it, the teeth are artificial. There is a clear difference between having real teeth and fake ones. I would describe it as if you were wearing a clear retainer or guard that covers the natural teeth and then try to eat with it still in your mouth.

The doctor at Hopkins temporary cemented them in place to make sure I felt comfortable with the new bite. After a three week trial period they were permanently secured in my mouth.

Wish I could 100% enjoy it, but my insurance company, in all it's wisdom, denied to cover the payment of the bridge. I really don't feel like paying 7k so obviously I am fighting it. Again.

So, as of right now, I will only have to make two visits to Hopkins a year. One with my oral surgeon, to make sure my new teeth are still looking good. The other with the Head & Neck Surgeon to make sure my tumor does not come back. This does unfortunately involve yearly CAT Scans.

I can not imagine going through all this again. I don't want too really. I am completely satisfied with my choice in hospitals and I would recommend the staff at Hopkins to anyone. Though at times I do wish the hospital was close to me and that I did not have to drive thru three states to get there.

If you are reading my blog, you or someone you know is going through this "rare" disease. Whether you are in the beginning, middle or end we all have stories to share. I encourage anyone to write a blog or start a journal about this journey. It's good to know you are not alone. Plus, its cheaper than going to a psychiatrist.

I will continue to update my blog, and try to do it more frequently than I have been. I am sorry for that. Life can get in the way of certain things, but really that is no excuse.

My story is not over.