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.

Josh,
I am glad that you have Timber to help you through the radiation. Remember that you have to take good care of yourself so you can take care of him. I am convinced that our dog (now beyond the Rainbow Bridge and waiting) helped my husband do as well as he did.

Best wishes and keep in touch!
Maria

Hi Josh,

Truly, you are very gifted in the written word. Sorry you found us here but glad you did as this is a wonderful site for information and support.

I was touched by your photos. Animals have a 6th sense when it comes to our physical well being. I have a Pixie Bob. They are known to be dogs in cat's clothes. We had a house/cat sitter stay at our place while I was undergoing treatment in Baltimore. We came home over the weekends but "Socrates" knew something was up.

Since I came home, he has spent most of his time with me. I'm never far from his line of site. He knew something wasn't right with Daddy even before I was Dx'd. Truly, he has been a huge assett in the healing process. He gets me up out of my recliner to play "mousie" with him (a modified game of fetch where I do most of the fetching ~lol~). Follows me wherever I go in the house to keep an eye on me.

It's amazing how therapeutic our animal friends are.

Best wishes to you. Positive thoughts and prayers.

"T"

Thank you everyone for your kind words. I'm humbled by the way you see me based on the words I've spoken. I will most certainly keep you all updated every step of the way. I am very happy to have stumbled upon this site and see there are so many wonderful people out there to provide support. We all need to stick together, it makes getting through this so much easier.

David, as soon as I was cleared to eat I started doing food instead of the peg tube. I also talk as much as I can to try and become more clear and build up my muscles. I only use the tube to take my meds as my discharge papers specifically said to crush the pills and mix with water and take it through the PEG. One of the first things my oral surgeons and radiologist recommended were the fluoride trays, I have an appointment with my dentist this upcoming week to be fitted for them. Unfortunately since this has all happened so fast and I will be starting my radiation within the next two weeks, I won't have a long period of time with the fluoride trays before hand, but I'm assuming I will be able to use them during radiation as long as the mucositis isn't too bad, though from research I've done mucositis seems to be just about guaranteed. My swallowing has improved dramatically already and I'll work on it as much as I can. I have a speech therapist who comes to the house and gives me swallowing exercises to work on as well.

Sounds like a plan!

Welcome. Not all medications should be crushed, and put through the tube, especially time released meds, and pain pills. Check with your pharmacist or get liquid meds. Good luck.

Paul, my doctors made sure all the meds I have given, pain and medicinal alike, retained the proper chemical compounds when crushed so they do not lose their strength and effectiveness. Also, the pharmacist I use is a close family friend who I've known my entire life, he always steers me in the right direction with any prescriptions I've ever been given.

Josh,

I was taken aback at how similar our stories are. I was a busy lawyer, and pushed my issue away for a few months as well. I also "knew" before I was told, having done all the research and watched the neck dissection video on youtube.

I am now just shy of 9 months post-surgery. I sounded like the godfather last fall, then Elmer Fudd with a lisp, then like a deaf person. With the help of speech therapy, and a lot of work, people who didn't know me before don't know, and those who did say I am about 95% back to "normal".

I have never doubted I would get through this, although there are days of self-pity from time to time. My one real breakdown was at home in the shower when I realized I couldn't lift my arms high enough to wash my hair. I cried and then figured out a way to get it done. That's been my motto...find a way to get it done, even if it's different than before.

It sounds like you have a great attitude, keep at it. This place is where you can vent. I needed it as I didn't want to burden my family. Now I check in for the reminder of how lucky I have been.

I'll be thinking of you, and wishing you the best through your treatment.

Tina, I completely understand what you mean about the shower. My left arm is still very limited in motion while I'm healing, so I've had to adjust a lot of things I do. Sometimes I forget my arm isn't even close to the strength it was and I go to pick something up, which just results in me almost dropping it. Everything, for now, is just all about adjustments, but I too always tell myself to find a way. I hate being a nuisance to anyone and I hate being so dependent on anyone, so I figure out ways to do everything I can without help. The only problem I run into now is becoming tired so easily, but that's expected. My speech therapist stopped by today and said since I'm having no problem swallowing that there really is no more need for me to see her anymore. To just keep swallowing what I can to build up the muscles, and in terms of talking just move my tongue around as much as possible to build up the muscles. Of course the obvious of talking as much as possible, as well. I always laugh when people reassure me that I'll get through this multiple times in a span of two minutes because I've been saying that from day one, I realize it's kind of their way of reassuring themselves of it. I am here for you, and anyone in that matter, if you ever need to talk or vent or anything of the sort.

Rosemary, I actually had no flap put in, only sutures. My tongue has been healing beautifully without any problems, and my doctors also told me it will regenerate over a span of 5 years. Obviously not completely, but every little bit helps.

Josh, I also found that singing helped with my speech therapy...I'm sure my neighbors were not entirely thrilled, but the speed of words in a song helped with the slower pace of day to day talking. I became a white girl rapper in my shower as well, LOL.

I assume you are doing physio as well for the shoulder? If not get on it. I couldn't lift my arms past shoulder height for the longest time (about 4-5 months), then in the span of a few days, everything clicked. I've been doing slow weight training since then, and I was able to play baseball this year with my physio's approval. It has been great to get back to "normal". I was inordinately pleased last week when I threw out a runner from 1st to 3rd and I heard someone on their bench say "she's got a gun, don't test her".

Great that you didn't need a flap - it's a very odd feeling (mine came from my wrist). I used to bite mine all the time, now I know what it feels like between my teeth, so it's rare, but still creepy.

Keep on keepin' on!

Yeah I need to talk to my home nurses about assigning me someone for PT. I was hoping I would be further along by now and they said if I need one to just ask and they will set me up. I actually play guitar, piano, and I sing, so I've been doing a bit of that. My voice is still fine, just of course pronunciation is a little off. But I was pleasantly surprised I was still so capable. I actually felt more comfortable singing than speaking, it seems to sound a little more fluent.

I've also actually played baseball my entire life. I had every intention of trying out for the college team when I went in the fall, but since I'm deferring my acceptance to the Spring, I will have to put that on hold. When I am well enough, I will get into a good exercise routine, slowly but surely. I know to pace myself. I have been complimented on my arm my whole life, luckily I'm right handed so my throwing will be fine. It will just be a matter of retraining my left arm for hitting. But I work very hard and I can overcome anything, so I have no worries. I think it's amazing just how similar our situations seem to be!

When my surgery was first explained to me in detail, they said they were considering using a flap from my thigh, but I guess they opted to just suture it up and let it heal on it's own.

Yep, Josh...getting stranger by the moment - I took up guitar 2 years ago (my C-G change is causing me a fair amount of grief as my fingers don't want to listen to my brain). I found that playing also helped with the mobility in my wrist, which is totally back to normal. My voice is slightly lower than before and I have some issues with higher notes, but all in all not too bad. I'm practicing hard as I have a performance in 10 months at a charity event.

I found the same with singing, as they syllables (especially "s") meld into one another so the enunciation is a bit easier.

They took a bit more than half of my tongue, so I needed the graft. I told the surgeon to make sure they lasered it as I didn't want to feel like I had a hair in my mouth all the time, lol!

For PT at home, I found that lying flat on a bed and using a pole or broom handle over my head was one of the more helpful exercises - it also stretches out the back from general poor posture from overcompensating on the right side.

Love your dog, by the way - he's beautiful.

Yeah I had trouble with chord changes for a while, but eventually it becomes pretty fluent, second nature. My voice is the same, but I also haven't started radiation yet, so it might very well end up a little different. Hopefully not, but there could be worse things than a changed voice. I used to be a pretty shy guy, but my freshman year of high school I played piano and sang in front of a full auditorium, around 1,000+ people. I was the only person at the talent show to get a standing ovation, it was a very humbling situation and certainly helped me get out that shy phase.

I'm sure I can look up some PT exercises online, it would probably be more convenient as I could go at my own pace according to what my body tells me. I don't know if it's from the swelling in my neck or not, but my left shoulder blade seems to stick out a little bit more than my right one now. I hope that goes back to normal.

Thank you! He is currently sleeping at my feet. He's a very loyal friend and I could never ask for more in a pet than what he provides to me. I brush him for a good 20 minutes a couple times a week, so his coat is very well cared for.

I used to be a tenor, now a solid baritone. Also lost a bit of pitch control but that seems to be getting better so there is some hope. Honestly, I wasn't that great to begin with. I have encouraged my musician friends to record what they have written now. I had several songs in the works that I wish I had recorded BC.

I'm a professional musician by trade. Guitar, mandolin, vocals. I'm worried about my voice. At this point, 10 weeks post Tx, I can sing but I'm definitely not where I was pre Tx. The surgery has made my throat a little smaller due to scar tissue. I won't know the ramifications for some time.

Playing is not an issue. I have weakness in my shoulder due to nerve damage but I haven't lost strength in my hands or forearms. I'm playing a wedding ceremony this Saturday (instrumental music only...no singing). It's my first gig since treatment. Unfortunately, I have a few gigs I booked for August that I'm going to have to cancel due to my voice not being up to snuff

"T"

Wow with all this musical talent we need to start the OFC Cancer Choir! I will exclude myself as I don't even sound good in the shower.

I was a tenor in my high school choir. I was one of only four people from my school to make it to regionals, and one of two who qualified for state. Unfortunately, I was also involved in theater and both the baseball and swim teams, so I had a conflicting schedule and I wasn't able to go to my state audition. I'm definitely not expecting my voice to be 100% the same, and I won't really be disappointed if it isn't. I find just as much joy playing as I do singing, and just as much joy listening to other people play as well. I think it's awesome to see all the musical talent on here.

David, I couldn't help but crack up at your comment, haha. Singing isn't always about sounding good. Don't get me wrong, in terms of being a performer it is absolutely about sounding good and all of that, but just for enjoyment, if it's relaxing and makes you happy, sing your heart away. I've gladly sang with tone deaf friends because of how much I knew they enjoyed it. I would actually purposely make myself sing not so great so not stick out.

Hi Josh,
Glad to hear you are doing well! Your story sounds very similar to mine - diagnosed at 24 with no risk factors, HPV negative, stage 3, hemiglossectomy,chemoradiation, the whole bit. I feel like being young and getting this type of cancer was actually somewhat of an advantage, as you can bounce back quicker!

Unfortunately, I used to love spicy foods as well, however I can rarely tolerate any spice anymore. I hate to be the bearer of bad news, but it was actually the radiation that caused my intolerance to spice, not the surgery. But I feel like my tolerance is getting better by the day! I live in New Orleans and I was able to eat crawfish this season, which I was so excited about.

Hang in there, feel free to send me a PM if you want to talk!

[quote=davidcpa]Wow with all this musical talent we need to start the OFC Cancer Choir! [/quote]

Could you imagine a choir of OC survivors? We would have the "all's good" section, the "hoarse" section (Think Tom Waits/Joe Cocker/Stevie Nicks/Kim Carnes), the "gloss" and "partial gloss" section (in which case "humming" may be the answer)and the "electrolarynx" section which would be very cool for techno stuff ;)~

"T"

Hey Josh, your furry buddy is beautiful and the best part of therapy!!! Your pics made me smile - lots of love there!
Dogs rock!

Barbara (wife of Richard)

Emily, that is crazy how our situations sound just about identical! While it does suck to not know "why" you get cancer, especially while you're so healthy and at a young age, I completely agree about having the advantage of being able to bounce back quicker. It's a double edged sword, really. On the one hand, getting it at a young age is horrible (getting it at ANY age is horrible, but I believe everyone understands what I mean) because of the reality that even with advancements in the medical field, nothing is guaranteed. Of course that doesn't at all lower my spirits in terms of being completely confident I'll kick it's butt, but I am a realist and I do understand how serious it is, I just don't focus on that aspect. On the other hand, our bodies can handle more and recover much much faster. My age was the main reason I wasn't given a flap, they said my body is strong enough to heal well without one. Also, there are worse things than not being able to eat spicy food anymore. I would learn to deal with that. I will definitely take you up on the PM offer. =]

Fishman, reading that provided me with the best laugh I've had in a while! Thank you for that!

Barbara, I completely agree with you! I love my girlfriend to death for all she's been doing for me and how much she's been here, my family as well. But that alone time to relax when it's just me and Timber is time that really just lets me rest, all while I can sit back and reflect on things and still have company and relieve some of the built up stress. I actually wrote a paper for my college psychology class about the effects animals have on people, and there are studies that show so many positive effects, such as simply petting an animal releases endorphins that help you relax. There was also another study I focused on that talked about how kids with autism who generally don't connect with anyone and hate being touched, find ways to really connect with dogs because the dogs love unconditionally and they show such patience with the kids. A lot of people highly underestimate the value of having pets.

Fishman, someone should think about that for a fundraiser for OCF! I would totally be in - I'm using my oral cancer as a draw for singing at a Habitat for Humanity fundraising party in the spring of 2014! I may be terrible, but no-one would have the balls to say it anyway, I'll just be "so brave" LOL!

Tina,

That's interesting you bring that up. Before my treatment started, my friend and singing partner (I play solo and in a duo) helped to put together a benefit for me to help raise funds to cover my expenses while I underwent treatments. Ironically her partner suffered from BOT SCC HPV+ and went through treatment 2 years ago. he's now NED for two years. At the benefit, we spoke about oral cancer and HPV to raise awareness.

During my treatment, my caregiver and I stayed at Hope Lodge in Baltimore. During our stay, several groups, churches etc. came by and donated their time and resources to provide dinner to the people staying at the lodge. There was a couple of times they had entertainment as well (a magician and a classical pianist).

When I get better (and hopefully regain my singing voice), I will contact the lodge and arrange to provide an evening of entertainment, head down and do a set for the folks there. I would also be happy to donate my time to an OCF fundraiser should one come up within driving distance.

"T"

Hi Josh, and welcome -- I'm sorry about your diagnosis, and that your surgery was so rough. I hope you have smoother sailing from here on.

The American Cancer Society offers scholarships to college-bound cancer survivors and patients, maybe that would be of interest to you.

You have a beautiful spirit, stay strong!

Hello everyone, sorry I kind of disappeared for a couple days. I had dentist appointments to get filled for my fluoride trays and I had my radiation simulation and a lot of family wanted to see me. I start radiation tomorrow. IMRT 15-17 minute sessions Monday - Friday for 7 weeks. I believe they said 38 treatments. Or was it 33? Let's just say 6.5 - 7.5 weeks.

The simulation was so uncomfortable. Stiff table, mask molded tightly to your face, have to stay completely still. I'm so glad I'm not claustrophobic. I'm not even sure someone with that fear would be able to go through with it. They said the simulation was perfect, so I guess I did pretty well with not moving. I'm definitely not looking forward to the next year of my life, let alone just the radiation treatments. I know it's going to be a long road to recovery. I've been stuffing my face full of delicious food since it's likely that I won't be able to eat from the side effects. Of course there is the chance that I am one of the lucky ones who avoids too many serious side effects but just in case, I'm enjoying it while I can.

I had a question if anyone has been through it. My dentist scheduled a teeth cleaning for the 31st, which will be a week and a half into radiation, and I know that the radiation will make my teeth sensitive. I was just wondering if the teeth cleaning is going to be a bit uncomfortable because of the radiation?

This probably should be done before you start radiation. Everyone reacts a little differently. You never know, you may be one of the ones who has mouth sores already starting so you wouldnt want to do a cleaning with that going on. Always best to get all this stuff taken care of in advance. I would ask them to squeeze you in or to be put on a cancellation list in case another patient isnt able to keep their appointment.

Plus when going thru chemo/rads your resistance will be low so avoiding crowded waiting rooms when possible is a good idea.

Good luck with everything you have coming up!!!

Hi Josh,

I had to have my teeth totally done and checked out prior to treatment complete with a letter from my dentist before they would begin treatment at Johns Hopkins. While a week and a half into rads isn't that long, I would still check with your RO about that.

In the mean time, while you're waiting for your fluoride trays, at least use a fluoride rinse. My dentist actually prefers that I do the rinse as opposed to the trays. He recommended the Listerine kids rinse (the blue stuff). I use it twice a day after brushing. He does a fluoride treatment at my visits. It's imperative you take care of your teeth during and after treatment. I recommend the Biotene Dry Mouth toothpaste as well. Both the toothpaste and the rinse didn't burn my mouth even when the sores were running rampant.

My teeth were very sensitive from about 4 weeks in until about 4 weeks post. They're fine now. Scheduled for my first post Tx cleaning next month. Remember, no more deep cleanings. I just got a water pik and it helps a lot with daily oral hygiene.

Good luck with the treatment! I'm not going to sugar coat it, it's brutal, but you'll survive. Try your best to heed the advice you've gotten thus far.

Positive thoughts and prayers

"T"

I agree with Christine, teeth cleaning should be done before treatment, due to risk of infection, and you may want to check on post treatment. i heard somewhere, probably hearsay, it's around 3 months. Even during treatment when flossing, if the gums bleed, you may want to discontinue for the same risk infection, but check with your doctor.

Thank you all for the suggestions. I will definitely talk to my RO tomorrow. My dentist knows about the radiation starting but he still scheduled me for a cleaning. He seemed pretty confident there wouldn't be any problems, but even though he is a professional I think people who've experienced this would know better. I didn't even think of infection, my main thoughts were about how sensitive my mouth will be. I keep forgetting how vulnerable my mouth is going to be to infections. I just saw a commercial for biotene today and I was going to ask my doctor about it, funny that you recommend it! I've already received my trays, I was fitted last Friday and got them this past Friday. Getting the molds was awful I pretty much spent a minute almost vomiting until the mold came out. Just horrible.

I don't know if it's nerves or what, but it's 2AM and I can't sleep, my radiation starts in 6 hours. Anyone else have sleepless nights?

Wishing you all the best with your first day of being on the path to be well again.

Insomnia seems to go hand in hand with OC. I still suffer from it.

Your dentist has NO IDEA what you are about to undergo so either get him to see you ASAP or quickly call another dentist. There is no way to tell what you may feel after 1.5 weeks of rad. I hope we are only talking about cleaning. I hope your dentist has already checked your mouth for cavities and fillings, etc.

You should be seeing a dental oncologist, if you are he's probably thinking 1.5 weeks in is still safe because the real pain usually doesn't start until around week 3 - however - your having chemo too I assume, so your immune system will be compromised, add to that the possibility of being hyper sensitive to rads - some people are... And it could be very uncomfortable, plus any extra small nicks while cleaning could cause infection etc... I'm with the others push to be cleaned earlier.

I had a dentist, a qualified person, nice guy, who did my pre radiation fillings, extractions, but he was not a dental oncologist. I did not inquire about any dental trays, special fluoride nor was it recommended, except giving me chorhexadine, even though I knew of the others preventive measures. I was scared of any additional medications, doctors, after being beat up for a year, and went the local route with treatment, instead of my CCC. As such, other contributing factors, all my teeth need to be removed sometime soon, plus doing HBOT, 20 prior, 10 after, which I did two years ago. I'm just trying to hold off as much as posdible with no dental insurance now, plus not wanting surgeru surgery until after my Pet scan, but now is effecting foods I can eat, and pain sometimes. Proper oral care, and pre-radiation dental care is very important. If there is doubt with anything, radiation can be delayed. Once radiation is given, it can't be taken back, and should not unnecessarily be stopped.

I use biotene dry mouth products, mouthwash, toothpaste, gel, spray, gum.

David, it is just a cleaning. I already have my trays and I've already had xrays and an examination, my teeth are healthy. Before my surgery in the hospital the oral surgeons also did an xray to check for cavities as well. So yes, it is just a cleaning.

Cheryl, I'm fortunate enough to not need chemo as well. All the margins in my lymph nodes came back clear so chemo was taken off the table. I'm in for 38 radiation treatments.

I will definitely be looking into the biotene. I already wake up with pretty bad dry mouth, I want to counteract that as much as possible.

Typically, some platinum based chemo accompanies the radiation as a radio-synthesizer that improves the performance of the radiation treatment. It can also be given to help "mop up" any microscopic stray cancers so there are at least two reasons why chemo is done along rads.

Cisplatin and carboplatin are the most common chemos offered during rad treatment. One big bag every three weeks and smaller weekly dosage is also an option.

Personally, I would fee more UNcomfortable that chemo is not part of the radiation treatment. Check it out some more if you of the "hit it hard NOW" philosophy camp. If anything, rads are usually dialed down or out when someone young gets cancer as it permits more options in the event of cancer returning later. don

Added to DonFoo's excellent message, you should be aware that the purpose of the -platin chemo is to prevent cancer cells from dividing (reproducing) during the attack on them with radiation.

You seriously want to question your lead oncologist about this omission, and don't accept anything but a clear explanation that you are comfortable with, if they persist in not giving you the chemo.

The worst of the worst chemo is over and just a memory after 90 days.

In my view, it would be very short sighted to agree to avoid a relatively short (in the context of the rest of your life) unpleasantness in favor of a risk that could lead to a recurrence of the disease.

You do not want a recurrence, trust me on this. You are young and will throw off the effects of the treatment quickly. Don't blow your ONE chance of a long lifetime, for a reduction (NOT an elimination) of the (short lived) unpleasantness of the treatment.

Please!

Hi Josh, just wanted to check in and see how you are faring. I think you're about half way through and getting to the tough times. Just wanted to let you know I'm thinking about you and wishing you the best.

Hey Josh! First of all, I'm sorry to hear that you have the big "C". But I promise you, you can get through this! whatever you do keep pushing! Radiation will be tough but it will be over sooner than you know it! I'm also a youngy! I was diagnosed in November 2012 just a few days after my 19th birthday. But hey! I made it through! You can too! You can email me if you have any questions or just need to talk! I'm here for ya!