Trying to find order adn direction.

Hello

Over the last 12 years wife had base of tonge scc , asophogectomy + gastric pull up fro squ scc, and in the last 5 months has had a lobectomy and 2 partial larenpharingial surgeries to remove Squamus C carci.

As she suffers from Fanconi Anemia, (a condition known to give rise to tumors)which "unfortunatley" has excluded her from having Radiation or Chemo, due to hypersensitivity. I am led to believe from others on this forum that Sweet blue and chef may be Fanconi too, but theyre "out of action" for now and i havent heard form them in my desperate search to find a surviving adult who has had squ cc of aesoph and hypopharynx and treatments. Our last biopsy showed positive margins microscopically and now were on Erbitux only.

So we're always waiting... waiting.. waiting. I go to work everday and wish i didnt, but i gotto earn money , we have two small kids.

We've had a peg for 5 months and we just removed it as it was really painful. She has now opted to remove the j-tube, on the basis that if need be she'd have it reinserted and enjoy some time being "unconnected".
She has had a trache in her throat for 5 months , but it is not being used. The doctors are refusing to remove it as a precautionary measure, just in case. SHE FEELS CHOKED BY IT and is desperate to have it removed.

She did Yoga for years and this in addition to her "everything is ok + get on with it attitude" attitude im sure has contributed to her phenomenal ability to walk her way out of hospital each time. Today she is doing daily walks and eating as much as she can. she has managed to keep her weight stable , but its a struggle.

Deb lewis, In your profile you wrote:
"A squadron of co-workers are assembling dietary information and collecting the necessary recipies and equipment to prepare easily-swallowed protien-rich and nutrionally-dense meals."
Do u have any recommendations for us. As in your profile, your latest post shows how determined and emotionally intelliget you are. We are trying to still fight a good fight. But we are tired, and i am darting form discussion to discusion and my head is in a whirlwind. THis is nothing comapared to what all of you have and are going through, i know.I apologise if this all sounds self centered. I hope to get through this and return to being a more giving human being.

Any response by anyone wil be heartfelt.

Thanks
Clear B.