Alien on my tongue (big p.s.)

January 26, 2010

Thanks for the concern and support.  I feel loved and not alone.  It is a real challenge, waiting until we have enough information to decide on treatment options.  I never like to wait.  I never like uncertainty.  Guess this disease will teach me valuable lessons!

We are looking at four options.

I saw a surgeon affiliated with Massachusetts General Hospital last week.  Hoff, my friend since we wuz in diapers got me in to see him. The surgeon is gifted but somewhat unconventional.  His patients include Julie Andrews and Ozzy Osburne.  Good thing I don't have to sing for my surgery.  He wants surgery first (9-12 hour procedure) then radiation and/or chemo.  If we go with him, he'll take the tumor off the tongue transorally (through the throat), then make an incision from my ear to my Adam's Apple, a big curve, that he can peel up and through which remove lymph nodes and anything connected to them including the nerve that allows me to move my right arm above my shoulder.  If he can't get the tumor off the tongue transorally, he'll continue the incision to the other ear and get it out through the neck.  Sounds like fun, eh?  Then radiation and/or chemo.  The big challenge is to get the cancer cells that are in the lymph nodes not removed (because they are still too small to identify.)  My lungs are clean.  Ann is cooling towards the surgeon because he may not remove the tumor transorally.   If we go through the throat for tumor removal, side effect possibilities include needing permanent feeding tubes and loss of speech.  Hey, I can learn sign language.  Talk with my hands.  I won't mispronounce stuff.

My niece is a pediatric oncologist with Dana Farber/Childrens Hospital.  She set up an appointment for me with the adult oncologist of her choice at Dana Farber Cancer Institute and his team for option #2 - that series of appointments are tomorrow.

Option #3 is a surgeon at Mass Eye & Ear who specializes in tongue & throat, recommended by our PCP and a friend who is an ENT. 

Option #4 is a surgeon in Chicago who does surgery only on patients with my condition.  He uses lasers transorally and micro-staging (as they remove tissue, they send it to the path lab until the sample is clean.)  We have an appointment for February 1st and if I qualify, he can do surgery the next day (February 2nd, my birthday!) 

Column A, B, C, or D?  We'll see...

Love...

Richard