Thursday, May 13, 2010

Hasn't ANYONE Had Tongue Cancer Twice?/Heading to MSKCC

Jeez.

I like to think I'm a pretty internet-savvy sort, and in the over-sharing world we live in, you would think that with a good online search there would be an overwhelming volume of stories of people who have gone through the same thing my dad is. But there aren't.

The reality is that there may not be a lot of case studies in the public because there aren't that many cases. I've found a Livestrong chat group for survivors of BOT (Base of Tongue) cancer and have signed on just to see if I can find out any more info. We just need to be armed with any questions and as much experiential info as possible.

Now...the good news (at least for now)! After a number of conversations with my Dad...and good friends, and kind contacts, and referrals, and research, and ultimately a conversation between my dad and his current doc...we have landed on a doc that we will be meeting with at Memorial Sloan Kettering. He actually has expertise in Rehabilitation of Head & Neck and the potential robotic surgery my dad may need. He sounds like a perfect fit. Let's hope so.

My dad, true to form, was worried about going to NY for treatments. After all, it's not like it's 20 minutes from his house, like New Haven. He'll need help. And that is ok. I told him it's the last thing he should be thinking about. We just need to go where someone is going to know what is best for him. The closest center that makes sense is MSKCC.

On another note...perhaps unrelated, but maybe not...O woke up with a crazy nightmare last night. Like, to the point where he asked to stay with us for awhile. He never does this. He refuses to discuss it with us - he "doesn't want to talk about it" - but needless to say, I think my empathetic boy has picked up on something going on.

2 comments:

Helen/H1202 said...

Not a lot out there, but maybe here?

http://www.thesurvivorsclub.org/support-center/health/cancer/mouth-tongue-and-throat-cancer.html

pve design said...

Oh, sorry to hear about your Dad, but with a daughter like you and a caring family at his side to help - and friends, there's a plan and hope!
I love how perceptive our kids are!
pve