Marv, Ive been thinking a great deal about your last post since I replied. You may find this helpful, or you might not. At the very least it will give you a different angle to view your situation. Im telling you the chain of events that led me to change my decision of not to get treated to go thru with the major life changing surgery. I am going to be completely honest and explain in great detail why my mind was changed and Im so glad it was. I just want you to consider the entire picture before making the do-not-treat decision.

When I was diagnosed with my third round of OC in 3 years I was shocked. I had not felt as strong and well in many years. I couldnt believe I was now a Stage IV patient who was facing losing half my lower jaw when I was feeling great. This goes back to the feeling of everything being out of control and how as being the patient most will feel as some point they do not have any say in any of their treatment decisions. There seemed to be no options for me to decide anything. When presented with an option the first thing I said was NO! I was finally able to make my own choices. It really didnt matter to me what the decision was about, I just knew I was finally able to say NO! like I was taking some of my lost power back. The big picture of my future was bleak!!! As a single mother to 2 teenagers who had no one else, I was beside myself with trying to figure out how my children would be ok without me. You know you're in trouble when the doc says "its time for you to get your affairs in order" which was exactly what my ENT told me.

My survival odds were so low that my doc wouldnt tell me any numbers. I had made the hardest decision of my life and that was to not seek any further treatments. My thinking was it was much better and easier for my children to have their mother with them when she was feeling good and strong and able to prepare them to go on without me. When I posted my decision to not get treated, I was overwhelmed with objections from other members. They made an excellent point telling me I couldnt quit before I tried. I couldnt think of anyone who had survived 3 rounds of OC. It really bothered me thinking of every OC patient I knew and I couldnt think of a single one who got thru that 3rd round. Many patients didnt survive the 2nd round. I finally decided to go directly to the source of who knew the most OC patients. I called Brian Hill the OCF founder and asked him about knowing anyone who lived thru 3 rounds of OC. I could tell by his pause he was caught off guard by my direct question. To this day I kinda have a feeling he fibbed to me but thats ok, I couldnt be happier to still be here. Brian said "yes, there are 3 time survivors. Not many, but there definitely are some out there and if anybody could do it, I could." Between the OCF members nagging me to try instead of giving up and Brian telling me there are 3 time survivors out there I changed my mind and sought treatment.

Once I finally agreed to try I had so much to prepare before that surgery. My doc let me choose the date of my surgery and I selected 2 days after my sons birthday. I went right to work as I had only 2 months before that surgery date. I had TONS to accomplish. I gave my beloved dogs away to a friend from our forum who gave them both a forever home. I got right to work and put my house up for sale. I moved to an apartment that was close to the hospital instead of like my house was way out in the woods, 45 minutes away. I started writing letters to my children that they could read thru for many years chock full of important tips on milestones they will go thru in their life. I took them out and made some great memories. I decided that no matter what they were not going to think back to memories of their mother and think of me as someone who was weak and sat around crying about things instead of doing something about it. We went bike riding, long 25 mile rides along the river, zip lining (I chickened out after getting half way up the gigantic tree), horseback riding and all kinds of fun family adventures. I decided to have a huge birthday party for my son and told both of my children to invite as many and whoever they wanted but to invite everyone. I wanted them to be surrounded by people who cared about them just in case I didnt survive the surgery. So on Aug 22 we had a huge party in our small apartment which was a great day for everyone.

Just agreeing to go thru treatment for that third round of OC was one of the hardest things Ive ever done, let alone doing it! I ended up having complications from the surgery and my body rejected the titanium plate used to replace my jawbone. Leeches were used to promote bloodflow to the transplanted tissue, it was unsuccessful. The mandibulectomy had to be redone. This caused me to become disfigured. I was in critical condition being kept in the burn unit due to needing so much attention from the medical staff. After 3 weeks of being kept in a medically induced coma, it was time for me to wake up. During the hospitalization my oldest child would stay in touch with one of my OCF friends who would in turn post updates. My son also posted for me. To this day I cant read his posts without crying. He came and sat with me every day I was in the hospital weather I was awake or not. My daughter who didnt drive came as often as she was able to. It was incredibly difficult for my children to see their only parent which they depended on for everything unavailable and laying there sleeping in the burn unit or then the ICU.

Once I finally was awake I was in great pain from head to toe. I was so sore after laying there for 3 weeks with barely moving. My son was who had break the news to tell me what happened and that my original surgery failed. I wasnt able to fully understand what he meant until a few days after I woke up and was able to finally hobble unsteadily to the bathroom. When I looked in the mirror I didnt recognize myself. I was shocked!!! The next time I went to the bathroom I took a much better look at the new me. It was at that moment somehow my inner strength took over. I realized that no matter what the outside looks like or what other issues I have going on, the inside is still me and there isnt anyone that can ever take that away. I reasoned all people will age and looks will always fade as people get older. So during those long 5+ more weeks I was trapped in that hospital, I prepared myself mentally to deal with my new appearance and how Im still me which can not ever be changed. During that long hospitalization, my son would walk me up and down the halls helping me to regain my strength. I had issues with healing and had a 6" long open "tunnel" that was kinda like a tiny straw that just wouldnt close. I was in great pain which is why I said in a previous post the trach and feeding tube werent fun but I had other bigger issues than those things. I knew they were only temporary and eventually I would be free from them. I had a wound vac that was like a small suction appliance attached to my neck for the unhealing "tunnel" wound to try getting it to heal. That thing ran 24/7 and drove me crazy with a whirring sound right next to my ear, definitely worse than the trach and feeding tube.

When I went home I was still in bad shape! I was very weak and unsteady on my feet. My son was there to help me but left for Marine boot camp only about 3-4 weeks into my going home. Luckily, I had visiting nurses for almost a year after going home, they came every other day to change my wound dressings and to check on my overall health. It was a long 8 months of doing HBO and picc line antibiotics 3x a day. It was a heck of a long road that took me a year until I was almost completely back to my normal self.

What my life is now after almost 9 years of surviving after that Stage IV diagnosis with a very low chance of survival is something I never could have imagined. Ive survived to have so many wonderful experiences. Ive seen my son marry a great girl who I know together they will create a long happy life together, I am a grandmother to 4 children I love with all me heart. I never imagined that being Grammy would be so fulfilling. Those little ones are always thrilled to see me and usually so much fun and well behaved with me. My oldest granddaughter, Savannah just turned 4 on 4/24/18. Even though I wasnt able to continue with my career at Verizon after going thru that huge surgery in 2009, my life now is so much better than I could have ever imagined. Brian not only helped to convince me to seek treatment that third time but he also gave me a reason to get up in the morning by asking me to become an Admin and to speak at OCF events. Ive been so very fortunate to have been able to meet in person some of my best OCF friends Ive made over the years at events all over the US. Brian is a very dear friend to me which I greatly admire. Brian was someone who saw something in me that he knew I would work trying to pass along the things Ive learned over the years to help others oral cancer patients and caregivers. Ive represented OCF in information booths at medical conferences and helped explain patients views to the doctors, nurses, dental hygienists and nurse navigators Ive met. I am dedicated to OCF and making everyone aware of what oral cancer is and how early detection saves lives. Thru OCF, I met some awesome ladies that are casting directors and was part of a TRUTH anti-tobacco commercial. More recently those same amazing women asked to include me in the CDC's Tips From Former Smokers campaign in 2012 doing radio ads. Last year I spent a great 10 days in NY making some of the CDCs latest anti-smoking commercials that are currently playing on all major networks. Do I ever think about how my looks have changed or worry about my health? Honestly Ive adjusted to my new self very quickly. Sure I still face my own set of medical issues every day but in the whole scheme of things.... I am so happy to still be alive!!! All the aches and pains and being disfigured has not been easy. I spend many days feeling pretty lousy and feeling sick but I would not ever go back and change that I opted to go thru with my treatment. Since that surgery, Ive helped thousands of oral cancer patients and caregivers get thru some of the hardest times in their lives. All those people needed someone to help them and I did as much as I possibly could do for them. Even with having a very different life now is ok. Im just so very happy Im still here and was able to finish my most important and biggest endeavor... I survived that third round of OC and was able to continue raising my children to see them become intelligent, kind, productive, and responsible adults.

Marv, I hope you will see that even though things havent turned out exactly as I had expected or planned for, my life is still a very good one. Sure I have my challenges but Im here to fight them and to me its worth it. Living with a disability is definitely not an easy thing to do! Please dont just say no to the surgery without thinking of the whole picture and how much you mean to those who love you. Consider what a great future you can have even if you arent able to be the same as you currently are. Please stop to consider those who are the closest with you and how you would feel if they were the ones who were refusing necessary medical treatment knowing it will save their life. Being different isnt always a bad thing! Im positive you can do so much good in this world no matter what your challenges are. Your future will be changed no matter what your decision. I know plenty of others who have overcome adversity and gone on to live awesome lives despite having some medical challenges. We have someone here who immediately comes to mind... MissKate. If you read her posts you will see how she has been thriving and thats after having a full glossectomy. I know you have it in you to overcome whatever is thrown at you. I wish you had the confidence in your capabilities to step back and take a good look at everything before making the decision to not have the surgery. As I mentioned before, we will support whatever you decide to do about your situation. I apologize that I have temporarily ignored your decision of not having surgery to write this extra long, detailed post that is a plea for you to keep going. I just couldnt get it out of my head that you too can benefit from all those people who years ago encouraged me to keep going and to try before just quitting. I promise to not nag you further, just please at least consider all of your options before making your decision.

Feel free to PM me if you want to discuss this further.