And the Expert Says...

Scott and I went down to Cedars Sinai to visit Dr. Forscher...the sarcoma expert. He has a lot of experience with Desmoids. After driving around the enormous campus...we finally found Parking Lot 6...sheesh! It wasn't easy!!

The nurse that we first met up with made sure everyone in the sarcoma wing knew that I was a new patient. Everyone greeted me with a lovely smile and hello. It was such a refreshing change!! The next nurse that came into to take my history was soooooo, sooooo nice! She actually brought me to tears because in all the many months, doctor visits, specialists, scans, labs....I had never come across a person who just looked me in the eye and said, "I will do ANYTHING to help you"...and mean it! She went into a lot of scenarios that would make me getting chemo at Cedars possible. I don't know that these "things" are right for me personally but the idea that someone understood what it means to have a desmoid...the struggles...the fear....the pain...the unknown was such a relief for me. She was incredibly empathetic and caring. She offered to always be a phone call away and ask the doctor to actually write out the orders (specific orders) to deliver to my doctor. AND now that I have a chart, with records and a face and a memory of who I actually am....I am now considered a patient. I could call and get answers. Like I said, it was just such a different experience for me. I felt like finally I was somewhere where they understand desmoids and they actually wanted to help me. Wow!!

Dr. Forscher was equally as nice. He took a history and gave a mini lesson in desmoids. The causes...nothing concrete but genetic, hormonal or a result of trauma. Nothing new...I don't have a family history...the last Wheeler was born in 2005 and far enough away from this ordeal to be determined it's probably not hormonal and trauma. What can I say? I fell down the stairs (hardwood) within a year the beginning bump. Who knows!? The short explaination is it doesn't really matter. I have them and they aren't going away easily!

He confirmed that surgery, while for some can irradicate the beast, for others it can fuel the beast. Yup! That's me! Radiation is the same story. It made my tumors grow..not shrink! Double shucks! He did, however mention that the amount of radiation I received was a "fair" amount. He is not the first doctor to be surprised by the amount of "day glow" I received. Lucky me :-) So he feels chemo is the next likely step. As is the cocktail that I am on.

Interestingly, he mentioned that the liver counts don't excite them much because they expect it especially with the Methotrexate. So! My doc was on to something when he ignored them initially. He did say that they do pay very close attention to white counts. Mine have always been a problem. My oncologist likes to refer to me as "not a high flyer." I let him know that I will now be trying vinorelbine instead of the vinblastine. He didn't seem to disagree.

My overall impression is that we are on the right track. He said he wouldn't be doing anything else at this stage. My tumors are stable and my pain has subsided. These are all cause for celebration. He recommended scans every 3-4 months and I could return to him for his opinion or have them sent his way for review. He was also going to write a report and shoot it off to my doctor.

Overall it was a good visit. I have to admit I left feeling a bit let down. I had unreasonable expectations. I thought he was going to wave his magic wand, tell me all that was wrong and offer the big fix. He did not and he said that I should be aware if anyone claims to be able to do that. He has years and years of experience and is continually being challenged by these terrible creatures. So no magic wand, no pretty bow on my story...back to reality!