Well, here's to my first post <cracks knuckles> My name is Kevin, it's nice to have a name to the Person, rather than remembering a person simply by type an severity of their ailment.

I am 5.5 years cancer free and I am going to just type out my story, it's interesting (and bloooody long) and I like telling it to people, I hope you can see something in it that helps you.

Everything was normal in my life until -
Back in late 2000 I noticed that I couldn't whistle as well as I thought I could. I didn't think anything of it except that it persisted. I looked in a mirror one day and realized my lips weren't puckering in a circle.. and i noticed my eyebrows weren't raising to the same height. I thought this odd so I went to see a Neurologist and an ENT. Being something wierd with my head, i was keen to find out what it was. Neither doctor was able to explain why this was happening and offereed the idea of a mini stroke or Bells Palsey. For those who don't know. Bells Palsy is a prognosis based on lack of evidence of other things causing paralysis of the face. OK, fine, maybe a mini stroke happens at night when you're deeply asleep. The ENT ordered a CT Scan and an MRI and it came up empty.

A couple of months later after hearing the results were clear, i set aside my worries and felt things would spring back. They didn't. After 2 months it was worse.. down to about 60% functionality on my smile, eyebrow, wiggling my nose, anything. This was unnerving so I went again to an ENT and Neurologist. The neurologist told me it's definately not neurological.. go away. ENT told me that they can't see anything but offered to do exploratory surgery to see what was going on inside. I didn't feel too keen on the idea of getting my face cut up just for someone to take a peek inside.. if scans don't catch it, then it's probably nothing. I went away again, with no results but only deeper concerns and worries.

At this point I went to a 3rd ENT, it's been 6 or 7 months since my first whistle and this time, the ENT *knew* there was something amiss, she wasn't going to let anything stop her from figuring out what was happening. I admired her for that. She went through everything she could think of, including getting advice from Toronto doctors, testing me for lymes disease, lots of things.. this whole 'Bells Palsy' thing came back into question but I had taken no hits on the head and had not had any strokes that i was aware of. the 3rd ENT gave up reluctantly, told me to go to a larger centre in Halifax, NS (Canada). By this point, my face stopped working on the left hand side completely yet I had all sensations there.

The doctors there did a CT scan and an MRI (at this time the 3rd of each i've had) and sat around in a group looking it over. They decided that since my face was not working yet I had my balance and sense of taste, they deduced that my nerve damage had to be from a certain point, and forward. So whatever happened to my face, was going to be rectified by taking the nerve out of my pinky toe (remarkably similar nerve structure to your 7th nerve in the face) and patching my facial nerve with it.

This was a straightforward 4 hour surgery with great odds of success. I said my farewell's to my pinky, but by this time, I was willing to sacrifice quite a lot to get my smile back.

Through everything until now, i had been hurt most at the loss of my smile. I got married Sept 2000 and I couldn't smile for my wedding pictures, the 2nd most important day of my life, (the first being the birth of my currently 2.5 yr old daughter). Being new to this, I felt as if I looked like a monster, or at the very least a smart a## in all my pictures. I have never gotten used to my half/face smile to this day although my friends say they can't remember me without it now. I'll never forget.

Well, my mother and wife attended the surgery and waited for 4 hours.. 5.. 6. They started asking questions, 'Where is he?' 'Is he ok???'. This part would have killed me had I been them, I commend their strength of character and love because when I woke up, i never could have guessed what they went through. At the 10hour mark they were told to go back to the Hotel and they were called at the 14 hour mark to say I was out of surgery.

My recollection is waking up, throwing up, passing out.. until I woke up the following day with the doctor standing in front of my bed to tell me, 'Kevin I have some bad news for you'.

He told me that when they opened me up, my nerve was about 10 times its original size.. they traced it back to the Parotid gland (biggest spit producing gland) and realized that it had a 1.5 centimeter tumor in it. The tumor used the gland as a shell so on scans, it looked like any other flesh and did not show up. Meanwhile, this aggressive cancer I had decided to travel through my facial nerve and as it grew, my facial impulses deadened.

The doctors stripped out every piece of 7th nerve they could find through surgery, and microsurgery, that required the exposure of my entire neck and cheek. The biopsies on the extracted nerve took 15 minutes apiece to determine if they had cancer so after chasing every branch down and testing it, they finally feel they got ahead of the growth. Funny but two things strike me as worrisome, as i read between the lines of what I was told. 1. this cancer is very aggressive, it can travel in the nerve and it can skip places to infect later down the nerve line. 2. they never cut the nerve shorter than about 1" from the skull due to what i believe is policy. Just makes me wonder at times.

As you can probably imagine, there's a helluva scar there. I tell kids I got in a fight with a shark or an alligator, depending on the locale i'm in at the time. hehehe they *always* believe me.. it's great!

Having the cancer removed meant going through the radiation theraby, on two separate angles so as to not fry my frizzled brain cells. I ended up having my tongue burned to the point where the tastebuds were burned off, and the neck blistered. I didn't have TOOO much pain, definately *could* eat, but I doubt you would be surprised if I said that eating lost its appeal to me in a Big way. Nothing tasted like food, nothing was desirable and i am a food addict. (only way about 200 lbs at 5'11.. but by all rights i should prob be 275!!).

About the end of my therapy (not the end of the effects of the therapy) I discovered that raw vegetables were the easiest to find the desire to eat. I found they didn't rely so much on sweet/sour/salt/bitter like your tongue is trained for and I found them tolerable. Suddenly i was a vegan! I have to say that the healing was messy on my neck but OK on my face. I've also never been able to use the left hand side of my face again, well, until another operation, kind of, but that's another long story.

I'm very much happy and alive today. You'll never hear me say i'm a cancer survivor because I'm not. I'm Kevin, love my frisbee and computer, and my wife and daughter without reservation.

I have the same fears and worries as many people, but I think i have the strength of character to see this as another dip in the road, not a life and death battle. By my calculations, if the cancer started my whistling problem, then that tumor was in my head for a year before anyone knew what it was.

I don't think i'm lucky or unlucky, i'm not a victim, God doesn't hate me, i've never smoked, rarely drink and stay on the good side of everyone i meet. Some people say I don't deserve this, I say, Better me than someone who may not have the strength to fight the battle.

If you've read this far BRAVO! This is my first novel in my new series.. I'm kidding.. it's not a novel, just long enough to be considered one. Thanks for reading this far, really. I hope you find inspiration in my words.

Kevin, thank you so very much for sharing your story....oh my gosh! I am so glad you are here and doing so well.....Congrats on your wedding and your daughter! God Bless, Carol

Thank you for sharing an extremely interesting read, and welcome to the Oral Cancer Foundation Forum. A very intriguing story.

Commendable grades for all categories spoken of. Your bright outlook and blameless attitude are inspiring.

What did your biopsy read? What type of cancer is it? Pray tell.

Kevin,

What a story and an even better attitude !! I wonder about that now. I dont have a parodid gland ..they removed mine in Feb ..however i have swollen submanddibular gland ( research shows more likley to have cancer in the subman gland) I have had a ct it didnt show a tumor but an enlarged gland...so It is interesting to know that the tumor dosent always show, SO hard because I have the numbness and all from the 1st surgery . Why if this was a more lilkey place for cancer wasnt this one removed with all the other ones is my question, hind site is always 20 /20 ..we learn that more everyday too! I am a young mom of 5 and they are my joy and I plan on being around for a long time for them !

Wow. Well, it's interesting because I never knew I had cancer until it was gone so i never studied what i could have had. I also never built up any kind of fear of the unknown as to what it could mean to me if it *was* cancer. I'm saying this because I feel somewhat unknowledgeable about questions you guys ask that seem very fair and reasonable to know as a patient. Yet I don't. I think i'm going to see if I can have a copy of my medical work done on this subject, for my own knowledge and to share.

I also typo'd Parotid hehe.. just in cause you were wondering where you could find a parodid.

PeteyB.. i'm going to find that out, for myself as well as for you. I was told I had a parotidectomy.. of course.. the removal of the parotid, but that doesn't really give meaning to the type of cancer that I had. If I remember correctly it was a hard word to remember hehehe. I'm gonna find out more and post it a little later!

Sharlee.. Perhaps they felt they were ahead of the growth of the cancer and could stop cutting before they reached the submandibular gland. We can only guess but your doc should know. I'll have a race with you to find out which doctor (yours or mine) ponies up the information we ask of them first Young mom of 5.. but very worked out I'm sure. wow.. and my 1 child keeps me soo busy.

Carol, thank you for your kind words. Funny thing about my wedding, I got married to a French woman, perfectly bilingual and i'm perfectly English.. with a LITTLE french from what i remember in high school 15 yrs ago. The wedding was in Bathurst, NB, my wifes home town. The day of the wedding arrived and my english family was all seated on one side of the church, the French and bilingual relatives of my wife were on the other. The priest of this Catholic church was also French but he could read english although his comprehension was about like my understanding of french. On the *morning* of the wedding, he lets us know that he has misplaced the english translation for the wedding!! He asked if we wanted to reschedule the wedding!! We couldn't, not since so many people travelled so far.. so we had a french wedding. Imagine the ritualistic responses that catholicism requires then imagine a bunch of english people not standing up or repeating any of the priests words when the french side were doing so. Even I was at a loss. In fact, feeling a little guilty about not participating in the ceremony of my own wedding, i attempted lip synching with the crowd. In actuality my jaw just bobbed up and down, I kinda made a popping sound with my lips that only I could hear. Funny thing, my best friends were watching and almost pee'ing themselves as I was doing this. I never noticed but they said they couldn't take it... they almost burst out laughing aloud. All in all, everyone was none the worse for wear, but what a memory.

I'll write again when I have some meat and potatoes regarding specifics on

Hi Kevin,
welcome to the forum and what a great story. I'm still laughing about the shark or alligator thing! I lost a parotid too but from collateral damage from thr radiation for a right tonsil cancer.

Most of the folks here have tonsil or BOT cancers and a few in the nasopharnyx, maybe one or two with salivary gland cancer.

I sure hope that they video'd your wedding ;-)

Kevin,
Another Canadian....! Welcome to the forum, Bye!(no worries to our American friends; and insider joke) I'm out in the redneck West, but we're much closer because of our shared battle.

I never considered the shark or alligator story...maybe I should go with a bear fight out here though. ;^)

I lost both the subman and the parotid on my left side during the ND and mandiblectomy. For months I had huge problems with dry mouth, but it has improved for me a great deal recently.

I'm a few days away from one year post surgery. My wife and I were talking about the term "cancer survivor" last night.

I feel the same way as you. I'm participating in a Cancer Society Relay for life this weekend. They asked me how long I'd been a "cancer Survivor" so they could announce that information during the relay.

I told them I thought of myself as a 51 year survivor of the journey of life; cancer was just a curve ball thrown in at year 50.

It was the biggest battle I've had to fight, for certain. It hasn't been the only battle during this journey, and probably won't be the last.

I've learned to be a pretty good scrapper through it all. I'd rather not fight again, but if I have to, I'm ready for it!
Wayne

Welcome Kevin and what a wonderful story. I grew up on the Canadian border, tiny town of Calais, Maine that bordered St. Stephens, NB. We used to walk across the border as kids to the movie theater over there with the "Canucks" and would have Fish and Chips with vinegar. Good memories. My brother found his love of hockey in Canada and to this day, as a 45 year old, he coaches youth hockey and travels the country with his teams. Nova Scotia and Prince Edward Island are my favorite spots, but most of my family is in Ontario. I also LOVE St. Andrews by the Sea.
Again, welcome!
Minnie

Kevin: What an inspiration you are! Thank you for your positive story. I really needed a boost from someone, and you gave it to me: Wayne and Minnie: You two are the only forum members I have noted thus far who have SCC Mandible as my husband was diagnosed with same three days ago (except his is in the right). It's gratifying to note that both of you are "old-timers" in your journeys, and that survival is indeed posible...As we progress with husband's treatment, may I keep you two in mind if we should have specific questions that the physician himself may not be able to relate to? God bless you all!

Hey Kev

Great story man. I too liked the alligator story.

Kevin - Memphis