Monday, September 20, 2010

Two Desmoid Tumors and Counting…….

According to the Desmoid Tumor Research Foundation, Desmoid tumors arise from connective tissue - the cells involved with the formation of muscle, fibrous and nerve tissue. Desmoid tumors, also called aggressive fibromatoses , are locally aggressive. This means that they can grow into and even destroy adjacent normal tissues, even bones. They do not, however, have the capacity to spread distantly (metastasize) throughout the body. Hence, most doctors consider desmoid tumors to be benign and not malignant. But regardless of the name, tumor-related destruction of vital structures and/or organs can be fatal. (

To me they are a life changing tumor that will take away your mobility and strength you once had.
 My Demoid Tumor Story begins back in 2007. That was the first time I noticed my upper right thigh giving me some trouble. It was winter and we were out Christmas shopping like we always do the week before Thanksgiving. This pain continued for weeks until I noticed a small knot. I watched the knot, treating it with a heating pad and believed it was a pulled muscle until the knot begins to grow. That is when I made my first doctor appointment. By this time it was early 2008 and one doctor lead to another, the knot all the while growing. April 2008 the doctor wanted to do a needle biopsy to find out what type of tumor this was. That was the worst pain I have ever been through. Weeks later it was confirmed, it was a Demoid Tumor. This doctor referred me to the only Indiana Desmoid Tumor doctor, Dr Wurtz. He is at IU Med Center. June 2008 was my first surgery.

Dr Wurtz told me he would only be making a 1" incision to get Desmond the Desmoid Tumor out and that I would be able to go home the same day. Turns out he was wrong. I woke up with a 12" incision but was still allowed to go home. Recovery was hard and painful. The muscle spasms I had after the Biopsy were back followed by lightning strikes—these were because he moved my main nerve and cut several smaller ones. It took me 4 days before I was able to take myself to the bathroom. But a month later I was back at work. I would say the first few months were great! I had no pain and felt like I did before the tumor came into my life. But that all changed when winter came. Late 2008 my pain was back and was worse than ever. I could not clean the house without being sore for days after. I called Dr Wurtz about getting a referral to Physical Therapy but he did not feel I needed one. So, I took some advice from my friend and co-worker Lee, decided to start going to get some massage therapy. No, not that relaxing feel good massage that you are thinking but the painful at the time feel better later type of massages. By 2010 I was feeling great and was even back to doing Yoga and bike riding. Life was good!
Then the phone rang, Wednesday, September 15th. Since being diagnosed with a Demoid Tumor I had to get yearly MRI's. I went in for my regular MRI September 1st and thought nothing more about it. Until the doctor called and said it showed my tumor had re-grown, this time higher around my hip area. My world was crushed! I was so glad Duste decided to come home early that day and she was there when I got the call. We cried the rest of the day. The next day I had an appointment with Dr Wurtz and another MRI. By this time I was done feeling sorry for myself and was now mad.
I am mad at my doctor because he said the hip pain I had complained about before my first surgery was unrelated. When the large lump showed up and my hip pain returned he said it was scar tissue. I believed him. He was wrong.
Now I have to have yet another surgery on Monday, September 27th on a spot where the roots/fingers of my last tumor left off. The same spot where the large lump appeared and all my pain all this time has come from. I do not want to do this again. I do not want to lay in bed for a month. I do not want to wake up after surgery to the pain. I do not want this!
I worry about my future. I worry about what this means for my mobility.
He did say one thing this time that he had never said before. Something I am trying not to think about, something I am trying to ignore. He said if it comes back again he would like to treat me with some pills, radiation and chemotherapy. The pill would put me into early menopause, which means no children for me. But he said he could not guarantee, after all this, that the tumor would never come back. He also said the hormone increase you have during pregnancy could cause the tumors to re-grow. I am not sure what to make of those statements he made but I am not going to let some tumor decide if I have children or not and that is for sure. I'm 27 years old, if I am going to have children I need to do it sooner than later and people love to remind me of this. I will not let a tumor that may or may not come back anyway determine my future of being a mother.
So that is where I am in my life right now. My life seems to be a raging river at times and my boat does not have seatbelts but Duste and I hold on tight for as long as we can. This reminds me of that saying "what to hear god laugh, tell him your plans!" This was not in my plans but we will work through this and carry on with our plans! Oh, and I am thinking about naming this one Dezy the Desmoid Tumor!