Hello from the Tarheel State. I am a 61 year old, soon to be 62, nurse who has practiced nursing for 35 years. In 1990 I was found to have leukoplakia under my tounge. The ENT I chose told me it was precancerous and I allowed him to perform laser surgery to remove the troublesome spots. From 1990 until 2003 I had 2 operations to remove the leukoplakia then in April 2007 I have an area to appear in between my gum and right cheek. Upon biopsy it was revealed to be a papllioma. Along with the papllioma I also had lekoplakiia on the back of the gum. My ENT this time was a very young doctor who assured me he would get it all when he operated. As I lay in the pre op area I again asked him to be sure to get IT all. In the recovery room I awoke to find he had removed the growth but not the leukoplakia. He assured me that I DID not want that on my return visit and that leukoplakia once thought to turn into cancer was no longer a risk.
In December of 2007 I developed what I thought was an absessed tooth where the leukoplakia had been left to grow. My gum became very sore and not wanting to believe what I feared and after numerous attempts to find someone to help me I found a very rude oral surgeon who after 4 weeks of waiting by his office performed a biopsy. I did not like the surgeon and because of his curt, rude attitude where he tole me no doctor in our area took BCBS I went online and found oral surgeons in Chapel Hill who DID take my insurance. Not wanting to go back to the rude surgeon I had my family MD send a referral down to Chapel Hill and I was quickly seen there before the oral surgeon here even got the results. Being somewhat naive, I had no idea that the biopsy was sent to UNC dental school until I was there one week later. They informed me that the biopsy was in the system and that the pathologist could get my results. My hubby had to run out to the car to check on our pouch and while he was out in the parking deck the kind doctor came in to give me the news. At first I did not want him to tell me but I figured the ENT knew best and that I would not have cancer as he assured me I can't explain the pain, fear and horror when I was told it was squamous cell carcinoma. But thank God for those wonderful dental school employees. They took charge, stayed with me until my hubby returned from the parking deck, helped to provide us with emotional support and from that time until this past September they became just a few of my heroes. They took care of making my appointment with Dr. Couch at UNC all I had to do was show up. The rest of my journey from Feb 11 until I walked out of UNC hospital under my own power March 31, 2008 was nothing less than a miracle. I will not take up more time to describe all the ups and downs of the journey but suffice to say after sitting in the surgical suite for 5 hours on 3/6 and waiting only to be told I would have to come back on 3/13 as they did not have a bed in ICU for me and having to come back to Winston-Salem to return a week later is just one of the detours. I survived the 12 hour surgery with the fibula free flap,( thansk Dr. Halvorson for such a great job ) PEG tube placement and trach, trach removed before I left the hospital 3/21 and came home to recouperate and with the help of my wonderful husband, change dressing, tube feed myself and even was allowed to remove my own PEG when I could finally eat. Albeit I am thankful that the surgery went so well and my oncologist and the tumor board did not feel chemo or radiation was necesaary at that time it now frightens me to hear some of the stories here. I am 12 months, 23 days post op and returned to work full time on May 5 of last year without restrictions and now walking 120 minutes a day. I have been truly blessed and feel that when she told me this was cureable I am taking her word for it. Without the prayers and encouragement by friends, family and the many churches who prayed for me I do feel I am cancer free and will stay that way. The lymphedema and swelling as well as having to "smush" up all my food is a small price to pay. Optimism is my friend. Thank you for allowing me to vent about my journey.

Suzy, welcome to our lil place in this bnig world. Congrats on being caner free and may you reamain that way for years to come. Good luck in the future.

Hi, Suzy,

What a terrible journey - so many forks in the road that could have ended badly. It's shame that we are bound to insurance gods that show no compassion, or even logic, at times.

I was more fortunate in that even though the bump on my gum didn't look or act like cancer, my drs. became my advocates and insisted I be seen by the next one immediately. I had 5 months between first symptom and surgery, which was much less extensive than yours.

Some stories here are scary, and we can become frightened for ourselves, but you also will find in them a sense of hope, optimism and gratitude. This, in turn, lends strength to each of us, no matter what we face, even if it's the other shoe dropping. Vigilance, knowledge, advocacy and action are the weapons we need to employ for the rest of our lives.

Congratulations on passing your first anniversary of being cancer free. Here's to a whole lot more!

Marlene

Hi Suzy,
So glad things are working out for you. I will keep you in my thoughts!

I wanted to let you know that we are having an oral cancer awarness Walk in North Carolina on April 18th, check out the current events section of the website. It is going to be in Cary, NC. It would be great if you can attend and represent oral cancer survivors! You are an inspiration to others and your presence would show people that you can survive and thrive with this disease!

Just a thought, you can contact Claudia at [email protected].

My best to you Suzy!!

I have heard about the walk but I oculd only attend if I can find someone to work for me. being on 11-7 shift I would have a hard time trying to get to Cary which is over 2 hours away on that date. I will try to talk with my supervisor to see if there is a way I could get off work but with the economy being what it is and my husband retired I am the bread winner and would hate to lose my job at this stage. I will let you know how it goes. Thanks for the reminder.

SuzyB47

Just as some years are famous for being great for certain wines, 1947 was indeed a Vintage year for humans. You are amazing still working a night shift after all you have been through. Welcome to the OCF forum -

Charm

Suzy, you are working the shift that I and a lot of my friends worked for a lot of years. If I went back to work today, that is the shift I would want. LOL Much less hastle on nite shift and much mre daylite to do things at home. I admire you just like Charm does.

I could spend weeks catching up and reading each story here. All I have read thus far have touched me and made me feel so much less like a freak with all these scars and not having the ability to eat like others. I actually had some co-workers who laughed at my peanut butter sand I took each night b/c it was all I could eat without having to chew. I was mortified but suffice to say I am much stronger now and can fight back...LOL. I am honored to be in such great company here. Wish I could have signed in last year when before I went back to work.

Suzy

Welcome to OCF. Its always nice to welcome new members who have already gone thru treatments. Its also very nice to have another medical professional around. Happy 1 year anniversary to the end of your treatments.

Those people who laughed at your eating habits sure arent very nice. Making fun of someone who has a medical condition is pretty rotten. Sounds like they must be completly perfect people. Now you know who your true friends are at work.

It's never to late to confront an idiot and it seems you have a few there Suzy. I will say this tho, I sure admire you for eating peanut butter, sounds like a filet to me. LOL Go give em hell. I was eating peanut butter with a lot of butter until I had to have an anneurysm repaird and he did something to my tongue to make it impossible for even peanut butter. Good luck and welocme to our home.