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Monthly Archives: July 2012

I just want to send a quick thank you to everyone that sent birthday wishes.  It really made my day.  I know many are wondering what happened in Texas.  I will put an update on soon.  It’s been a crazy week.  I need to be in the right mood for this next post.  Until then, and I promise I’ll do it soon,  you all made me smile with the birthday cards.

Seems I’ve got to have a change of scene

Every night I have the strangest dreams

Imprisoned by the way it could have been

Left here on my own or so it seems 

I’ve got to leave before I start to scream

But someone locked the door and took the key

You feelin’ alrightI’m not feelin’ too good myself

I guess its not fair to say I’m not feelin too good because I am felling a lot better, mentally, since the last update.  It’s been a rough couple weeks I must admit.  After hearing all the info from the surgeon a few weeks ago I was completely in shock.   Shortly after meeting with him I met with the Medical Oncologist to discuss the options.  He seemed to have a different idea about how he thoughts thing were for me.  First off, like many people mentioned, forget all the statistics.  You will drive yourself crazy thinking about all that.  (I was close to doing just that)  However, it is impossible to UN-Hear a doctor tell you “you’re going to die from this”.  The oncologist was quite a bit more optimistic as far as the prognosis.  He was not sure where the surgeon was getting all his statistics from other than maybe mixing together a bunch of information based on other types of Sarcomas.  There are about 70 different types.  Mine is a MYXOFIBROSARCOMA.  To be more exact he explained to me that while it does have a high recurrence rate it TYPICALLY does not spread to other areas of the body.  Typically being the only catch.  Doesn’t it mean it can’t or wont but “typically” if and when they recur it would be locally, meaning it would come back in my leg again.  The only way to take that is as a good thing.  If anyone wants to read the study he gave me you can read it HERE and a second one HERE.  They are lengthy and technical but worth the read.  This being such a rare thing its impossible to find anything about it online that’s worth reading.  I gave up trying to find anything so if you guys are looking stuff up about it it’s probably not relevant.  

Both doctors agree there are most likely cells still in me.  There is no way to tell for sure but they are basing that on the “positive margins” from the pathology report after the surgery.  This tumor grows kind of like a jellyfish with tentacles which is why its difficult to have the surgery come back with “clean margins”.    So as discussed last time, the option now is Chemo.  The oncologist thought the chances of chemo working were MUCH greater than what the surgeon mentioned.  He thinks more in the 40-50% chance it would work IF there is anything there to be treated.  I’ll take that over the 4%!  Let’s just hope he is right!  Of course there is the SLIGHT chance there is nothing there to do and chemo or further treatment is not even needed. There in lies the conundrum.  No one can answer that.  There is also no way to tell if the chemo is doing anything other than wait  to get the scans every few months anyway.  SO, the plan is to head to Texas and go to MD Anderson Center in Houston for a second opinion.  We are leaving Sunday to see what they say.  They are supposed to be the top place in the world for Sarcomas.  I thought Sloan was?  Honestly,  I haven’t felt like Sloan has put 100% effort into coordinating doctors and opinions on my behalf. Anyway, we will be finding out what MD Anderson has to say soon enough.  I am hoping they mostly agree with Sloan and I will just come back to NY and start chemo. All this time I have been thinking how lucky I am not to have to do that but it doesn’t look like I will get away that easily.  

I am sorry to everyone that wrote and I did not respond directly to.  I got all your emails and I really appreciate them.  I just haven’t been in the mood to write about all this very much lately.  I will try to do a better job keeping up.  Hopefully we get some good news from Texas!  Thanks for reading!