As a rule I do not like theme parks. I hate roller coasters! Since my recent diagnosis of stage 4 cancer of the tonsil, tongue and lymph nodes, I would rather ride the biggest coaster in the world, than to have to go through all of the poking and proding that I am currently going through now. I have learned more in 8 short weeks about family, friends, life in general and medical responsibility that I ever thought I would in a life time. I have had more needles and fingers stuck in me that I care to think about. Just sitting here I can almost taste the latex. YUCK! They need a cherry or grape flavored one. Perhaps I can invent that to pay for all of this.

The one thing I have learned and grown to appreciate is the commeradery experienced within the cancer community. No matter the kind of cancer, on thing remains constant. We treat one another as a human being, a fellow member of mankind, rather than a Cancer patient. ( Or Victim as some would see it.)

I am just starting this next week with all the fun tasks of treatments after an exhasting 8 weeks of interviewing all the different Doctors and figuring out the best coarse of treatment for myself.

I have started an Oral Cancer Blog. With in this you will find every thing from day one, feelings, road blocks and ect. Not only has this been therapeutic for me, but I find it is a great way to keep all my family informed on the latest. Really saves on my phone bill.

I have a traveled a long road and will continue to travel an even longer road. I have been very fortunate to have the support from family, friends and Doctors as well. Everyone has bent over backwards for me to insure all is going as smoothly as possible.

I can not wait to get past this to resume my normal lifes activities. Until then, I thank all of those within my support group who have been there for me. I only hope I can help others who may be going through this to feel as confident as I do now.

Best to all,

John

Hello, John and welcome to OCF! We'll be sure to check on your blog. All of us hate the roller coaster rides we've been on, but, thankfully we've all been in the same car together!

Lois & Buzz in NC

John, that'll be three tickets please!! (yeah...I have a bad sense of humor. Sorry)
Welcome!!
I read your post, yes I know this is no fun for you but, I laughed until my ribs were sore!! Whether you intended to or not you cracked me up. Thanks John I really needed that today.
This site is a wonderful source of information, opinion, experience and caring. You will hopefully find the answers to any questions that you have.
Cancer sucks, latex is disgusting and I agree with you that there are certain places where I don't place my own fingers. I was the fortunate recipient of being treated at a teaching hospital for doctors and nurses. Of course when my oncologist asked if I would mind students observing I said sure. I was a student once and had to observe and learn my craft on unsuspecting souls. Observe and "feel this" are two completely different things in my world.
John, flavored examination gloves are already on the market and for the most part they are a great product if you don't mind people licking and sucking your fingers. May I suggest that you focus on latex gloves with an oxycontin powder.
All kidding aside, everyone I have come in contact with on this site have been a great source of information. I am lucky to be welcome here.
I will certainly be reading your blog on a regular basis just to see if you keep the laughs going.
I wish you all the best and my thoughts and prayers are with you.
If you have any questions or concerns that I can help you with just let me know.
Uhmmm...I need the tickets now or the coaster won't move.
Cheers,
Mike

Make that 4 tickets and it's going to sell out quickly! Don't set yourself up though. Treatment will be tedious, painful and might even evoke a very emotional response. It will require tremendous patience to get through it. It's more than an extension of the road - it's a major speedbump. Your comment about the gloves brought back a lot of memories though. I was treated at a teaching hospital and the students were always putting their gloved hands down my throat. I actually had to encourage them. If it helps them to be better doctors then it's a good thing ;-)

I just read your blog - very nicely written. Is Ave the same thing a Aveloz? There is an article in Quackwatch about it. http://www.quackwatch.org/01QuackeryRelatedTopics/DSH/aveloz.html

I also had an advanced stage tonsil cancer and had only IMRT and chemo and I am starting year 6 of survival. The surgery was described very much the same for me - 14 hours on the table (they basically filet your face like a fish). pectoral flap, with radiation and chemo anyway. The consensus of my team was that my mortality rate was slightly improved without the surgery - evidently they were right.

They are testing your thyroid because they need a baseline TSH number, especially if you have to have radiation. You should also have an audiology exam (hearing test) in case you will get chemo as well (especially Cisplatin). You never mentioned a PET ot PET/CT - you should have one of those as well to rule out cancer anywhere else (and also confirm that the cancer is where they think it's supposed to be).

Advanced stage tumors typically are treated with multimodality treatment - i.e. RT/ct or surgery/RT/ct. If it were me I would be very nervous about a surgery only solution and definitely seek out more opinions.

Sorry that you had to suffer through a tonsillectomy - my tonsils just melted into oblivion from the radiation. Three weeks into RT, the cancer was gone - totally off the radar. I didn't have any node involvment (at least that was detectable - the smallest detectable tumor is 2mm).

I too thought that this was an abcess (or PTA) and put off going to the ENT for several months (after all I found an exact picture on the internet). My first ENT was more blunt - he told me straight up that he was angry that I had waited so long to come in and that I should "get my affairs in order" and that he couldn't be positive, without a biopsy, but it reeked of advanced stage SCC. I passed out on the throne. You would think they would let you enjoy your unconscious state before they stuff the freaking smelling salts under your nose.

Oh, I almost forgot, I finally had to TELL people to STOP asking me how I was (it's like THEY are waiting for the other shoe to drop). It really got on my nerves. I put together a bcc list and sent out regular updates and that capped most of it.

As we often say around here - "One day at a time"...

Thanks for all the support and compliments. It is very comforting being with those who are in the same boat. I am now going through my irritated stage. But this shall pass as well.

Thanks again to all,

John

PS. Ave' is short for Avemar

John you are such a strong guy - just from reading your introductory post I had such a smile on my face. I have heard my husband growl those same complaints. He is just finally coming out of the irritated stage because now treatmetn has started.
I am so with Gary on the comment about being tired of everyone asking are we fine - ugh. I created a CaringBridge site so everyone can get updates in real time and I don't have to send any e-mails nor make any phone calls. Our site is www.caringbridge.org/visit/danreeder if you are interested. I'm off to read your blog now. It sounds great.