Trying to find order adn direction.

Clearblue

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.

Hal61

No apologies, not self centered
Hello Clear Blue, my name is Hal. I'm 61 and have ended treatment for base of tongue SCC with two lymph nodes involved.

I wish I had some good answers for you. I can only offer my respect and support. I didn't read a hint of selfishness in your request, only love and dedication to your family, and a selfless willingness to reach out for help for your wife and your family's problems. It must be extremely hard for you to leave your wife each day and go to work as the care you have for her shows even through the pain of your message. All I can do is encourage you to not lose hope, as a person such as yourself, and your family, deserve hope. Your complications and pains dwarf those of most of us on this forum, and that is why I know everyone here is hoping with you, praying for you. I can only suggest that you perhaps try and concentrate on Fanconi Anemia searches via Google and Bing, and work out from there to try and find some answers to the interractions between it and the complications your wife has recently endured.

Hal