In Over My Head...I think.

Alan, you suggested that I send my last post "If happy little bluebirds fly" to the oral cancer foundation. Why exactly? I was just "journaling." Of what benefit would it be?

And I think I am in over my head. I have breast cancer, H&N cancer, and severe osteoporosis. I ended up (somehow) in all three groups. I only meant to join the osteo group because I was so FREAKED out about the side effects of a drug I was on for 6 years or so for the breast cancer, and my doctor didn't know it caused osteoporosis and that I should have been taking something. When I approached him for a bone density scan (as I read about the side effects of Femara), we did the scan and I have really really really old bones. He was going to immediately put me on Zometa! The one year shot. O My GAWD, without the slightest knowledge of ONJ due to 33 rounds and over 6,000 rads of radiation to my jaw area. I only accidently learned about ONJ from Dr. Google.

And as to your remarks about head and neck cancer, you state: "But I like those with amputations cannot hide what have changed. In that way again it is different from all other cancers."

I don't know whether I wrote in my profile about the horror of H&N cancer, but having had both cancers, we are of like mind. They did and took everything to and from my body with breast cancer and left nothing. But to look at me, no one would think that I am living with breast cancer. I won't go into detail about my double mastectomy, other than to say "I don't got nuttin left." But boy do I have the perfect prosthetic. Works for me!

The H&N cancer destroyed all of my saliva glands, the scar tissue inside my tongue does not allow me to pronounce the letter L if it's in the middle of a word or the last letter of a word. Nor can I speak Spanish with the many double L sounds. My favorite language, because it is so easy to learn. Before H&N cancer I had a perfect Spanish accent.

I cannot pronounce any "er" words without the sound of a speech impediment. I can no longer teach or lecture. I can no longer eat a steak or ribs or chicken or an apple; nothing that is not of the consistancy of jello! I will choke to death and have come very close several times. Terrifying!

The radiation to my throat burned a bit of a hole through my esophagus and so food easily gets stuck. I carry and drink a gallon of water everyday, otherwise my lips and tongue would feel like they were on fire and I would not be able to speak without the moisture.

I can no longer sing, which has brought me the most suffering. (There are those who tell me I still "have it"). As I was a singer and am still a choir director for an adult and a children's choir. My favorite thing in the world was singing; especially in the car along with musical tracks without vocals. Songs I wrote or co-wrote, other music tracks that family members recorded to which I used to sing. Yeah Alan, I would have to say that when it comes to cancer, H&N is the worst. (have paused over a dozen times during this post to drink water). FYI. I was not a smoker, nor did I ever drink alcohol past the age of nineteen. The H&N may have been caused by the radiation to my chest area. Dunno.

Anyway, get back to me and let me know your reasoning. My posts go on forever. Writing calms my spirit and probably makes many of our members crazy. Well, come to think of it, no one has to read my rants.

Love to all who are battling this crippling cancer. Hideous and ever so painful. That's my experience anyway. I have never been to a group, but I'm sure others have pulled through okay and in much better shape - hopefully. I feel for you Alan!

PS. The surgeon has absolutely no idea how I escaped surgery; taking a chunk out of my tongue and rebuilding. I responded well to chemo. But then he said. "I don't usually tell people this, because I don't often see it, but I think you are a miracle." Hmmm.

Lana