Hello, my name is Josh, and I'm 24 years old. This is my story so far.

Back in January I noticed a very small white sore on my tongue that just looked like a canker sore. It was on the underside of my tongue next to my wisdom tooth on the left side. It didn't hurt at all, so I just ignored it. I was busy with my second semester of college and working two jobs that I just didn't bother paying any attention to it. Around April, the sore was still there, a little bigger, but still didn't hurt. I was approaching my final days of my first year in college and I was so busy that I pushed the sore into the back of my mind. The fact that the sore had been there as long as it had, I actually said to my girlfriend and my mom I think I have cancer. At the time I didn't seriously think that, it's just kind of a comment that came out.

A month later in May right around when I was finishing up finals is when the pain kicked in, and it kicked in hard. The pain was intense and I felt pain not only on my tongue, but also in my neck and in my ear. That scared me. I decided to do some research on what it could possibly be, and the first thing that came up was cancer. My heart skipped a beat and I researched more because I didn't want to just go with the first thing I saw. The more research I did, the more I had this horrible gut feeling it was cancer. I had made the comment to my girlfriend and my mom again that I think I have cancer, except this time I was serious. It took me two weeks to get myself to a doctor because I was so afraid of what I knew I was going to hear. I had to come to terms with it. Everyone thought I was just being paranoid but I knew.

I went to the hospital and the admitting nurse looked at it and sent me to the "fast track" because it didn't seem serious and she said I probably just need to see a dentist. Of course, in my research I found a dentist would just recommend I go see an oral specialist, so that was no good. I was in luck, though, as an oral surgeon happened to be nearby when I was being examined and he came to take a look. When he walked in the room, my mom laughed and said "he thinks he has cancer". The doctor took a look at it and with a serious look on his face said it looks suspicious to him, that he can't say it's not cancer and he can't say it is, that I had to come back the next day to get a biopsy.

I went back the next day and had the biopsy done, it was a Wednesday. They scheduled my next appointment that day for the following Wednesday to discuss the results. I received a call from my doctor two days later and he asked me to come in on Monday, and he told me I need to clear up my schedule. This just reinforced what I already knew in my gut and in my heart. Still, waiting those two days to be told for sure were not easy. I went to my appointment on Monday and my doctor walked in, and he made small talk and I could see this look of dread on his face. He stalled in saying it. I myself couldn't imagine having to tell someone they have cancer, so I understand his difficulties. Finally he said it. He said, "It's cancer". I just said, "Yepp", and there was a brief moment of silence. I didn't freak out, I just calmly asked what the next steps are.

He told me about the surgery I would need and the initial diagnosis recommends radiation and chemo. I asked what stage and he said stage 3. I did my research and watched the procedure online. Everyone told me I shouldn't have done that, but I'm one of those people who likes to be informed as possible. My doctors were actually impressed with how informed I was and the questions I asked them because of what I already knew. I was diagnosed on June 3rd, and my surgery was on June 14th. My research showed a hemiglossectomy and neck dissection patient generally spends 7-10 days in the hospital, but my doctors thought I would be there maybe 3 nights. They were confident.

Unfortunately, after my first surgery of five and a half hours, the drain that was put in my neck ended up creating a hole in the back of my throat, and just an hour after my first surgery I had to go back in for another to have more stitches put in. Further more unfortunate, because my throat was already so swollen, they had to put the breathing tube through my nose while I was awake because they were afraid my throat would close up if they put me under before hand. So I remember very vividly having a tube forced in my nose and down my throat, and I remember coughing uncontrollably before finally being put under. That second surgery was an hour.

In recovery, I remember waking up and my lips and tongue were so dried up that they literally felt like reptile skin. That's the best way I could explain it. When I was finally sent to my room, I was hooked up to the machine that you press the button and you get pain meds every 7 minutes. Every 7 minutes felt so long. One of the worst feelings was feeling my mouth so full from all of the scar tissue and the mucous and being unable to swallow anything. My tongue was so swollen that I couldn't even close my mouth all the way because my tongue was between my teeth. Having had the catheter put in twice for a total of 6.5 hours, going to the bathroom was incredible hard and very painful. Those first 3 days in the PACU were extremely hard. After that I was sent to a different wing and was lucky enough to have my own room.

I still could not swallow and I still could not talk. No matter how hard I tried, I just couldn't do it. If I tried to drink even the smallest sip of water I choked on it. It was that bad for about 10 days. I started talking a little bit after about 7 days, but not very understandable and I had to constantly repeat myself which is frustrating. To go from a very clear speaking guy to someone who can hardly pronounce simple words is very depressing, but I didn't let it get me down. I had many of my doctors visit me every day, all of my oral surgeons always visited me twice every day and just spent time chatting with me and seeing how I'm doing. The surgeon who actually did the hemiglossectomy gave me his personal cell phone number and was available to me 24/7. It honestly meant a lot to have them around like that.

Unfortunately, my swallowing was just not improving, so I made the decision to have a peg tube put in. From my research, I knew I would end up getting one for radiation anyway, so it was a pretty simple choice. I knew that would get me one step closer to getting home. I just so terribly wanted to get home to peace and quiet and my comfortable bed and my dog. Oh how terribly I missed my dog. I had never spent more than maybe 16 hours away from him, and it had been about 8 days at this point. The peg tube surgery was on June 21st. It was quick and I don't remember it hurting. Of course once the meds wore off it hurt. Not extreme pain, but more of a really aching soreness in my abdomen. I couldn't sit myself up because it hurt, laughing hurt, deep breaths hurt, coughing, sneezing, anything that involved some abdomen convulsion led to pain.

I ended up spiking a fever of 101, and since I had JUST had the tube put in and I was still unable to swallow, the only option for the tylenol to get my fever down was to have it pushed into my rectum. I didn't argue but I certainly wasn't happy about it. As I'm sure you all know, though, you do what you have to do. It definitely helped and wasn't as bad as I thought it would be. My fever went down after that, but, my neck felt tighter than it was. I told my doctors it felt worse and initially they felt it and said it doesn't feel or look worse. The next day I said something again and they said it does look a little worse and they'll keep an eye on it. The next day it was really bad so they had a CAT scan done. Turns out I was right, and there ended up being an infection in my neck. They gave my a very huge dose of strong strong IV pain meds, because they had to take a few staples out and open my incision so they could force all of that puss out from the infection. Extremely uncomfortable. That made the pain meds wear off very quickly.

They put in two small drains so what was left had a path out instead of sitting in there. A couple of days later and the tubes were removed and now there's still a hold in my neck that I have to put packing into. I change it every morning, less and less each day until it heals fully. But I handled the tube feedings well and apparently very fast because everyone was amazed. Finally a day came where one of my doctors walks in and asks me if I want to go home, and before she even finished the sentence I said yes. I was released on June 26th. 12-13 days in the hospital was really exhausting, I was so happy to be going home. To add to the good news, the testing on my lymph nodes all came back negative, so the new treatment plan recommended was just radiation and no chemo.

So I've been home for a little over a weak now. Having been released on NPO orders (told not to take anything orally, not even sips of water) I had to do a lot through my tube. They wanted me doing 7 cans of the nutrition stuff a day, and that is quite a lot, though even with all of that I would still feel hungry because it's a different sensation than actually swallowing. Luckily on Tuesday I was cleared to start eating, so that's been good. I'm sticking with soft foods for now since that's obviously the smart choice while I work up all of the muscles again. A huge frustration has been biting the tip of my tongue. It's still numb so I don't have complete control over it. I don't feel when I bit it, but I can hear it inside my head, very very annoying. So when I eat, I have to do so very very slowly.

Today I made some chili for dinner, made it a bit spicy, and luckily that was not a problem. I read a lot of people who have had the surgeries say they can't tolerate spicy food. I love spicy food and have eaten it for most of my life, so I'm very happy to see I can still do it. I walk around a lot every day to keep my leg muscles up and be as healthy as I can in this situation. I was fitted for my radiation mask on Tuesday and will probably start treatments in around 10 days or so. I'm looking at about 6-7 weeks of radiation. I was accepted to the University of New Haven after just one year in community college because I worked very hard. They offered me $16,000 in scholarships. I've been very excited to head there and work even harder on my degree, but I made the difficult choice to defer my acceptance to the Spring so I can give my body time to heal.

I am handling my situation with my head held high, and still spending my time helping other people with their problems as much as I can. I will never let this define me. I'm going to kick the crap out of this cancer and give myself a very successful future, and I'm going to help as many people along the way as I can. I didn't intend to write so much, but I didn't want to sell my situation short. I know how serious my situation is and I don't take it lightly. I told my friends and family this: "Life happens incredibly fast. Do your best to really live and enjoy the little things. Learn to let petty things go and you will feel so free." This disease has made me feel much more free in some ways, and I think much more clearly and know what really matters to me. That is my story up to this point. I will never give up and my will to live will never let up in the slightest. I welcome any and all conversation and though I am new to what this is like, I will find whatever time I have to be around for anyone who wants to vent their situation as well. Thank you so much to anyone who takes the time to read all of this.


Lastly, while I was miserable and in pain in my hospital bed, I had a journal from livestrong with prewritten titles, and one of them was "The things I want to do the most". I just picked up a pencil and started writing, didn't think about it whatsoever, and this is what came out:

To feel the soft fur of my Timber gripped between my fingers.
Seeing those beautiful innocent sky blue eyes gazing at me so lovingly.
To feel the self-gratification of making my own way to a college degree.
To see the pride swollen in the faces of those happy to see me come so far.
To feel the excitement of starting my first and hopefully only career job.
To know that my hard work will provide the means to care for myself and loved ones.
To feel the rush from flirting with the idea of making a family of my own.
To feel the incredibly overwhelming feelings of being told you will have a child.
To find the day I wholly give myself to my love and ask for her hand.
To stand weak kneed at the alter admiring her beauty wondering how I became so lucky.
To raise my kids to become a better man than me.
To feel the happy tears I'll cry from seeing them succeed.
To pick only the most important battles to really make a change.
To let little arguments go and constantly improve myself.
To be told I did even just half the job raising my kids that my mother did for us.
To see the lessons I taught being taught to my grand kids.
I want to enjoy life for all the beauty it has to offer.
I want to live.

I forgot to add something about my diagnosis. Results came back HPV negative. Also, I don't drink or smoke or do chewing tobacco. I've been healthy my entire life, never had any problems and done my best to stay clean. The doctors have all been baffled and have no idea how I could have gotten this cancer. Essentially my situation is very rare for my age and situation.

Joshua, you are such a fine writer. There's a career path for you if you should want to go there. Nothing more to say except that I got so involved in your writing, the honesty you have and the way that I am so pulled into the feelings as well. Thanks, anyone who reads this will be heartfelt in their best wishes for you in what's to come.

Welcome to OCF, Josh! Im so sorry to read what you have already gone thru! It must be frustrating not knowing what caused your cancer. I see many patients here who are young and have no known cause.

It was very smart of you to delay your college a few months. With rads about to start, you probably would not be able to concentrate well enough by the fall. But by next year everything will be far enough behind you that you should be able to get back to school without any major problems.

Best wishes with your continued recovery!

Joshua,

Unfortunately we see a lot like you who have non HPV SCC; are young and have never used tobacco. So far no one in the scientific community has solved the WHY reason.

You have found the BEST site to help you through the rest of your Tx and recovery and we welcome you although I wish we didn't have to.

When do they plan radiation?

Thank you, Bilge. Honesty has always been one of my strong suits, and words have always been important to me. I think people highly undervalue the true worth of words when really they are one of the most powerful thing we have available to us. I appreciate your kind words, maybe one day I will make an attempt at really writing something. I've got a long life ahead of me so I have plenty of time.

Christine, not knowing has honestly been one of the more frustrating things. I have broken only once and that was about 7-8 days in at the hospital after I made the decision to get the peg tube. I just broke down and cried and sat there asking why this was happening to me. I've always done everything I can to help people out and make positive impacts as often as I can. From doing charity work to doing volunteer work to raise money for my local animal shelter, to being the first to always offer a hand when a friend is moving or just needs someone to be there for them, I've always had this drive to make a difference.

Delaying college was absolutely the hardest choice I have made. I was a high school drop out for personal reasons that really just led to the stupid decision to quit school. I spent 6 years working dead end jobs not really going anywhere. After I adopted my dog, Timber, he taught me so much of how responsible I can be and that I was capable of so much more. Some people think that's weird because they don't understand how bonded people and animals can become. I'm thankful every single day that I adopted him. April 2012 I took my GED test and didn't study a single minute for it. A passing score is 2250, I scored 3530. Max score per section was 800, I scored 800 in Science, 770 in writing, and 750 in math. I could have passed the GED based on those three parts alone! The day I received my diploma I applied to the local community college. Unfortunately the past year has not been lucky. in May 2012, we lost our home of 15 years to a house fire. I spent my Summer dealing with that while I waited for school to come around. It was a rough three months, but I have this amazing strength that gets me through anything. I had my dog and he never left my side. We've been through a lot together in such a short time. I finished my first semester with a 3.7 GPA while taking five classes and working a part time job, then finished the second semester with a 4.0 while taking 4 classes and working two part time jobs. After that first semester I joined the international honor society, which you can enter by invite only. To be invited after one semester felt amazing.

I planned on getting my associates at the community college, but I heard a lot of people talking about how a lot of classes don't transfer over to state colleges, so I didn't like that. I scheduled a campus visit at the University of New Haven which is only about a 5 minute drive from where I currently live. I fell in love with the school. The faculty was so involved with their students and the campus is beautiful with so many clubs to get involved in. 90% of the staff has a doctorate or the highest attainable degree in their field and they also work in the field as well, so you get real life experience from them. I decided to go on a whim and apply. I wasn't sure what to expect. Sure enough, I received a package in the mail telling me I have been accepted on $16,000 in scholarships. UNH is actually a private college, so that made me feel even more overwhelmed at how much stock they are willing to put into me, how much they believe in the success I will have. I cried tears of joy from that letter. I've decided to frame the acceptance letter because I'm so proud of how quickly I've turned my life around without any help from anyone. When I am healed up and I get to go to the school in the Spring, I am going to take it by storm and really make a name for myself.

David, my situation really gets the point across of how dangerous cancer is. Not to say people don't already understand it's dangerous, but the fact that it can just come out of no where with none of the known causes says a lot about how much we still have to learn. I've actually donated to cancer research in the past and I've participated in Relay for Life events as well, being in this situation I sure am glad I did that. I've read a lot on this site and the positive attitudes of everyone going through similar situations is definitely a huge boost in keeping spirits high. My determination will not falter. I was fitted for my radiation mask on July 2nd, my radiologist said it would take 1-2 weeks to get all of the specs down since it's a very precise science for radiation of the head and neck. So I would safely assume it will start the third week of July.

I'm a very passionate guy, that's probably why I keep writing so much more than I intend to do, haha. Thank you all for your well wishes, I will continue to keep my spirits high and let nothing slow me down!



This picture was the day I got home from the hospital. He is usually so excited and jumps all over me anytime I get home from being gone for just a few hours, but he knew something was up, he didn't jump. He jumped on my back and whined and gave me lots of kisses. He smelled my stomach where the tube is then looked at me, then smelled my neck where the incision is then looked at me, then smelled my tongue where half was now missing and then looked at me. He gave me a sad look, sighed, and then proceeded to lay down and put his head on my lap. When I decided to lay down this is how he responded.
[img]https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-ash4/1044589_10200376212103063_1780869179_n.jpg[/img]


No matter where I go in my house, he's right there with me. He makes sure I get plenty of love and attention while I'm recovering. He's the best support system as he always gives me a boost in my mood and he's always there by my side. I love this dog to death.
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I will say one thing I was lucky about is I've always been a bigger guy. I'm 5'9" and weighed 250 when I was diagnosed June 3rd. I've always been very active so I carried the weight well and my blood pressure and everything was always healthy. When I was discharged June 26th I was down to 218. I'm hovering around the 220 mark for now. I am lucky I had the extra weight because such a drastic weight loss could have been seriously damaging. I honestly didn't expect to lose that much, but I guess when you go two weeks on just IV fluids it's pretty severe.

Josh - I'm so sorry you had to join our little group but you have found the best place for support, engcouragement and information. I will keep you in my prayers and keep fighting the fight! We are all behind you. Hugs

Hi Josh,

Welcome to OCF! You are most welcome here and an inspiration to all on many levels. Battling cancer, struggling as a high school drop out, turning around to see the value of education and applying yoyr God given talent and ability to do good.

I am most impressed with your unwavering and most steadfast belief in yourself and being able to not only fight but beat the Beast. Good for you. I just made a similar comment elsewhere to the effect of having a steady and strong conviction going a long way to come out the end well.

Best, don

Joshua,

One thing to always remember when posters respond to any of your posts and that is we are all different; our treatments are seldom the same and seldom is the radiation field or the amount of radiation delivered the same so everyone can react differently to the Tx you will endure.

Also whatever we suggest should never be tried unless discussed with your cancer team.

During the rad most of us loose weight BIG TIME. Loosing 100 lbs during Tx is not unheard of. Make sure, starting now, that you consume 2500 to 3000 cals EACH and EVERY day. Also it's important to drink at least 48ozs of water each and every day. Don't use that PEG unless and until you need it. Many people become lifetime dependent on the PEG and some believe not using the swallowing muscles impacts on that.

Without knowing your teeth situation, most see their dentist pre Tx and most get fitted with Fluoride Trays to protect our teeth during radiation. I began using mine 1 month pre Tx and 5 years post Tx.

Record your TSH level from the next or current blood draw and keep in case your Thyroid craps out post Tx from the radiation.

There's much more to share but you have plenty of time to prepare.