Let the NEXT journey begin...

"To get through the hardest journey we need only take one step at a time, but we must keep on stepping."

Tears, sadness, hope lost, anger, fear...they all came flooding back 8 weeks ago.  I'm still picking at bones with God, but I know he understands.  I also know that at the very end when I stand before him, I AM going to be able to say, "I gave it all I had!"  Life can try to beat me down and beat me down, but it doesn't know what all my 120 pounds brings with it. 

About 6 months ago, for those of you that don't know, I started having some issues with a lump on my right hip.  I had a lot of fun with the kids at Gatti Town and really thought that I had a hernia come up.  My surgeon didn't think so though.  He seemed to think my stomach muscles were weak from the surgeries and my intestines were bulging some.  I was happy with that and went along my merry way.  Who wants more surgery or something else wrong with them, right?  Later, in May, I started having some issues with my intestines being blocked.  I ended up in the ER, where they did a CT Scan, but they didn't find anything then either.  So, about 8 weeks later, I start developing another painful lump near my belly button.  My first thought was, "Yep, these are hernia's.  Guess I should get back in."  So, in August, I went back to see my surgeon.  At that time, he was able to better diagnose what was wrong.  I have Desmoid Tumors.  They are very rare tumors.  Only about 900 tumors in the United States a year, but I have four.  Only 15% of people with Gardner's Syndrome will get them and they are caused by the trauma of surgery.  I have one on a leg of my aorta, which is beginning to block my small intestine, one in the fatty part of my stomach, one on my back muscle and one that is blocking my uterer, so it isn't allowing my right kidney to drain into my bladder. 

There is no time to sit here and worry about how they missed them or why.  They just grew very fast and started to invade my abdomen and need to be treated immediately.  I have decided that one of the hardest things in the world is having a rare tumor.  It is also one of the scariest.  Doctors and people are already so uneducated on FAP and Gardner's Syndrome, J-Pouches, it just added one more thing to that list of unknowns.

My surgeon was uncomfortable treating them because he never has, so I found my way to M.D. Anderson Sarcoma Center in Houston.  After many more tests and doctors, they decided that the tumors are inoperable and chemotherapy is my only option.  I was given a 40% chance, which I've learned is a big percentage in the tumor world.

I started chemo last week.  I'm on DTIC and Doxorubicin, "red devil" or "red death", as they call it, and believe me, it is!  They were able to put a neuphrectomy tube in my kidney while I was in the hospital.  That is helping me keep my right kidney healthy for now.  We are hoping to try a stent again next week.  Pray for me, I want to get rid of this bag!  I think you all know how I feel about bags.  It would just be one less thing if they could do that.  It would also mean that the chemo is shrinking the tumors. 

Chemo was horrible.  I think I allowed myself too much credit because it was not as easy as I made it in my head.  I had my last round from Thursday to Monday of last week (72 hours).  I'm starting to feel a little better today.  The nausea has eased and the fatigue isn't near as bad, but the sores in my mouth and GI tract are keeping me down.  My spirits started to be better this morning, so I'm hoping for a much better weekend.  I guess you start to feel better before they hit you with it again.  I will start my next round of chemo in the next 10 days.  We are just waiting for my white blood cell count to be back where we need it. 

Thank you to everyone that has helped my family in some way.  No matter if it was emotional or physical support, I am grateful and in debt for life to you.  The journey has only just started, so I know that I'm going to need you all over the next many months and I feel so incredibly lucky and blessed to be surrounded by the people that I am.  You are all one in a million in my book!  I love you!