Thursday, October 2, 2008

Oral Cancer Returns

I have just finished my Chemotherapy and Radiation treatments on June 26 of this year. In August I noticed that it was starting to hurt again. After having my insurance canceled because of not being able to pay the cobra and attempting to get Medicaid, My Sister found an ENT and a hospital to give me treatments on a Medicaid pending basis. The ENT thinks the oral cancer is on the whole left side of the tongue and quickly moving onto the right side. It is also working on the floor of the mouth and a small portion of the Jaw bone and the voice box. We have done a pet scan to see if it has spread anywhere else. Results not in as yet.

This news has devastated my family and I. For those of you who do not know, treament is no picnic. And soon, it is back. Or it never left, will never know that one for sure. This may require taking the whole tongue and voice box and a small portion of the lower jaw bone.
I will have a stoma forever. Never be able to smell, taste, eat normally ever again. BUT, I can live. They say you can live a LONG time like that. It is just a matter of accepting the new norm.

I know reading this makes me sound like I am the brave little trooper. I am no such thing. I will get past this but I am terrified for now. It would not be normal if I were not. I will keep you all posted as to the news soming this Friday. It may take me a while to get this to you, But I will get back to you all.

Monday October 6, 2008 Update:

The Doctor said that the tongue lit up in the pet scan and cancer is gong into the voice box. They also seen a tumor in th upper right lung. Going to have a bronchoscopy this wed am to see if it is cancer. Maybe will need radiation for the lung and then the tongue and voice box must be taken out along with a small piece of lower jaw bone on the left side. Will be a 7-10 day stay in the hospital.


Anonymous said...

Greetings John~

i am very sorry to hear of your situation. this is devastating news. cancer really sucks and oral cancer is killing me too.

4 Scott

i will be praying for you. thank you for your blog. it has helped me understand the disease and know what to expect.

take care,

Anonymous said...


Thank you so much for sharing. My brother in law just found about about his throat cancer. He is just starting the chemo-rad. He just had his stomach tube put in. Your documentation will help my sister in law in what to expect down the long road.

Again thanks so much!
My thoughts and prayers will be with you always,

Wendy S. Harpham, MD said...

Dear John,

I took the quiet on your blog to be good news. Busy baking or whatnot. Wrong...

Over and over, I see people adapt to situations that couldn't imagine tolerating for a day, let alone a lifetime. Somehow, in the midst of your terror you have the foresight to see yourself able to adapt over time. Wow.

I'd like to think your having the words for it - new normal - helps the rational part of you calm down (a little) your emotional side.

hang in there.
with hope, Wendy

debutaunt said...

Jeanne sent me your way.

Not sure what to say, but here is a big hug from a Texas twosome.

Debby & Zoe

laurie said...

I am so sorry this is happening. Cancer really is an awful thing. Wishing that surgery gets it all and that is the end of your cancer story. Wishing you a life filled with much joy, too.

jeanne said...

Hi, John,

I'm so sorry to hear about your current developments. Another John, John Diamond (Nigella Lawson's husband), wrote a book about his fight with throat cancer- "C: Because Cowards Get Cancer Too". He vehemently disliked people telling him how brave he was; like you, he saw his situation as something he had no choice but to deal with. But, being scared yet dealing with things as they are IS the definition of bravery.

My very best to you, John. Please keep us posted.

Anonymous said...

Dear John,

I hope you find some moments of peace today and tomorrow while you await your scan on Friday.

Meg Wolff said...

I read about you on The Assertive Cancer Patients blog. I think that attitude is everything.I think that there is a lot that we can do, we just have to do it differently. You will do well because you are determined to. Don't give up, you are beautiful and young.

I lost a leg to cancer 18 years ago and I'm still here. There are MANY survivors!! XO

Jeanne said...

For those of you looking for an update from John after yesterday's surgery, please go to my blog:

Good News From John

As soon as I figure out how John's blog works, I'll be posting updates here.



Anonymous said...

John, you don't know me. I survived oral cancer almost 11years ago and pretty much survived the same treatment you did along with a pretty invasive surgery-- free flap,radical neck.I lost over two thirds of my tongue. I'm so sorry to hear of your new challenges -- I know first hand how tough this can all be on everyone involved. You'll adjust to the "new normal" because it's better than the alternative -- still it's damn difficult. My thoughts with you as you enter this phase of your cancer journey.