Update

[KDaddy23]

Thought I'd let y'all know what's been going on which is... not much of anything. I'm still healing from the effects of chemo and radiation but my oncologist says that I'm looking and doing great six weeks after my last treatments. I found that my cancer was because of HPV and the P16 variant that comes from... oral sex.

Yeah, when I read that, I started laughing to think that my all-time favorite sexual act wound up giving me cancer but I also thought that if head and neck cancers due to not being able to pass the HPV virus wasn't a real thing, well, it is. I didn't bother to wonder why it picked this time in my life to show up given how many dicks and pussies I've sucked and eaten over the last sixty years because kicking my ass about that wasn't going to change anything.

I got cancer. I went through the treatment protocols and, yeah, it killed me twice in the ER and believe it or not, knowing this doesn't bother me as much as some of the shit I've been experiencing post-treatment... like my throat is starting to heal and it's setting my throat and tongue into fits as the nerves that were damaged (and probably what caused my lack of taste) are regenerating and... hurts like a motherfucker. I've had this... acidic taste in my mouth and when it's present, man, my tongue feels like it's on fire and my throat pitches a bitch when I swallow... anything. The only thing that "puts out the fire" is the magic mouthwash I was prescribed; not only does it have lidocaine, it has an antacid mixed in and after taking a 10ml shot of it, it calms things down but only for a few minutes.

Not a whole lot can be done about this other than to grin and bear it and like I've had to do with the other stuff I've experienced post-treatment like I'm probably going to wind up with tubes in my ears because I have fluid in my left ear that the team agrees that I have radiation to thank for and it's like trying to clear my ears and not being able to do it; my ear almost gets there and slams the door closed. The course of steroid my ENT wanted me to try didn't make a difference so I gotta call him and tell him and we'll go from there.

Otherwise, I've been pretty good. I can taste stuff now so I'm eating and making up for lost time and calories and I'm regaining weight, which is making everyone happy.

[Jazminedress]

Keep fighting Brother........you got this

[biguycancun]

Keep at it. At this point positivity and attitude are most important. You're gonna make it. This will soon be a bad memory. Suckin' and eatin' await you.

[Tag200]

Thank you for the further update . Thinking of you

[Neonaught]

I had exactly the same cancer. Hang tough buddy! It's almost over.

[Grumpygrandpa]

That's a crock! I lost my larynx because the tumor was wrapped around it slowly closing off the air way. The DR was taking the easy way out. No one has a definite answer for cancer causes. I smoked was exposed to asbestos, all types of chemicals and who know what else. Many factors contribute to the disease. I was scoped yesterday and showed no recurrences.
After 16 years I'm good. Sure you have to make adjustments but in the long run it's worth it.

[Flounder1967]

Keep up the fight. Both of you and all.

[bibliss]

Healing thoughts for you, your recovery, and for ease of being in life my friend.

[Sammyz]

Stay strong. We are all with you!

[DD788Snipe]

Go to hear you are progressing nicely, my friend. It's a marathon, not a sprint. I know how good it is to see cancer and the nasty treatments in your rear view mirror.

[Neonaught]

That's a crock! I lost my larynx because the tumor was wrapped around it slowly closing off the air way. The DR was taking the easy way out. No one has a definite answer for cancer causes. I smoked was exposed to asbestos, all types of chemicals and who know what else. Many factors contribute to the disease. I was scoped yesterday and showed no recurrences.
After 16 years I'm good. Sure you have to make adjustments but in the long run it's worth it.

Not sure what you mean saying "That's a crock"? The link between two subtypes of HPV and certain cancers is well-established.

[Grant_Norman]

Wish you the best

Grant

[Grumpygrandpa]

No up on all the disease linkages. Just an opinion. Dr's at times tell you what they think you want or don't want you to know.
Yes it's a shady side of the Hyppocratic oath "First do no harm" my late wife's Dr. Neglected to tell me of her pending mortality. Whether it was ar her request or his own omission I will never trust him again. I am glad you are on the mend. Many of us ride the same bus.

[paul6522]

Glad to hear you are still with us and surviving

[KDaddy23]

No up on all the disease linkages. Just an opinion. Dr's at times tell you what they think you want or don't want you to know.
Yes it's a shady side of the Hyppocratic oath "First do no harm" my late wife's Dr. Neglected to tell me of her pending mortality. Whether it was ar her request or his own omission I will never trust him again. I am glad you are on the mend. Many of us ride the same bus.

I remember asking the doctors what stage my cancer was in - that was before the shit hit the fan for me - and they started tap-dancing all around the question and it was clear that they didn't want to tell me - which was kinda okay because I had a copy of the biopsy report that said it was in Stage 2. I called the team out on this and let them know that I require full transparency and honesty and if I ask them a question, they should answer it without worry about me losing my shit, which I wasn't going to do.

I can understand the doctors not wanting to tell me that I had died but in one of my conscious moments, I knew that I had and none of them would confirm it - but it's in my medical records and I got to read it when I was discharged and had my post-discharge exam with my own doctor and all I said was, "Hmm, thought so..." Still, the hospital staff had to know that I knew I had died since I kept asking them if I did - and them refusing to answer was, in itself, an answer. That and the many times I've been told, "Considering all that you've been through, you're doing amazingly well!" and, yeah, what I went through is that I died twice, as it turns out. I can appreciate them not wanting to say anything that would potentially cause me to freak out but I'd rather hear the bad news than to have them look at me and say, "Um, sorry, we did all we could; you might want to get your affairs in order..." because, then, I would be 100% pissed and they do not want to see me pissed off.

Don't have me thinking that I'm gonna make it when you know that I'm not. My team knows not to try to bullshit me, though, since I do have access to my records thanks to those wonderful portals they're using now...

[Grant_Norman]

The doctors here in Thailand are straight up no bullshit. Hospital of course no cleaner and well staffed. But no medicare, the ?ealth insurance we paid for our whole working life. Government wants to scam us out of our benefits. If you have the funds Thailand is much cheaper but major hospitaization is cheaper in USA under Medicare. But my additional supplements for Medicare made it more expensive. Here doctors visit is only $25-$40. I stayed in hospital 3 days for $$500.

Philippines are likewise . Hope you can decide what's best for you. International medicine is better and cheaper than USA

Hope you do better.

Grant

[Neonaught]

Not all doctors have a good manner about them and, while they may strive to keep their patient's morale up, that's no excuse for being dishonest. I'm lucky to be a medical professional and since I can speak the langue age, most of my clinicians have had no trouble communicating with me honestly about my condition. I did have one Dr that hit me the wrong way and really pissed me off! At our initial consultation at the end she casually remarked "Next visit we'll discuss when to install your feeding tube.". I replied I did not have any desire to have a tube installed and the bitch actually laughed in my face and replied "We'll see." and walked out of the room still chuckling. I wanted to deck the bitch!

In the end she was right and the tube was put in a few weeks later after I lost 15 pounds in 5 days. That's no excuse for her shitty response with a patient who knew he stood a good chance of dying.

[KDaddy23]

Once my doctors realized that they were talking to someone who understood "their language," they stopped the tap-dancing; I ask a question, it gets answered. My mom was a nurse and some of it rubbed off on me and when you assume the responsibility for your health and get involved, you wind up reading a lot of stuff and asking a lot of questions and, yeah, you try to ignore me or blow smoke up my ass, there are other doctors.

Like, my RO pissed me off the very first day I met him at the "meet your team" meeting because I asked him a question and he kept right on talking like he didn't hear me. The day I got fitted for my mask - and got my cute little dot for a tat - I saw him and the first thing he did was apologize for not answering my question; I told him, "Good, because I was going to ask it again and if you ignored me, I was going to have you replaced on my team - this is my life you're playing with and when I talk, I expect all of you to listen and respond accordingly."

Didn't have a problem with him after that. Neo, yeah, she knew something you didn't although laughing in your face was rude. I didn't have a conversation about my feeding tube; they told my lady what they wanted to do and why and she okayed it and... PEG tube. My oncologist and her PA are both pushing to get my weight stabilized so the PEG can be removed for good so since I can taste food, I'm trying to eat like it's illegal so I can get rid of the tube. We'll see.

Grant, the one thing that scared the shit out of me was thinking that the incident that, well, killed me a couple of times could have happened while I was out of the country for vacation/partying to celebrate my birthday. I've heard too many horror stories about people being treated outside of the US and... things did not go well for them and given what had happened, I'm sure that if it had happened while I was in Mexico, I would have died because the doctors there wouldn't have thought of the solution that the docs here did to stop me from bleeding to death. If healthcare where you are works for you, I'm glad it does.

[DD788Snipe]

I would think you would be close to having your PEG removed. I finally convinced my ENTO to order the gastric doc to pull mine around 6 weeks after my last treatment. I think I was able to go completely on to semi solid foods after about 4 weeks. That damn tube sticking out and taped to my belly became a real pain that I just wanted gone. It had served its purpose.
How's your throat?

[KDaddy23]

Eh, my throat has its moments like, um, yesterday, I pissed it off drinking a dragonfruit/pomegranate drink... that also had lemonade in it which I didn't know until I took that first, cool and delicious sip - and my throat lost its mind! I might be close to having the PEG removed; that might be determined next week when I see my oncologist. I was going to tape that fucker down this morning and just decided against it because I don't want to be bothered with having to scrub the tape's adhesive off - that shit just wants to stick to me and make me rub myself raw trying to get all of it off and no matter what tape I use.

Just as with my trach, I want the PEG gone since I'm now only using it once in a blue moon - when I know I haven't consumed enough calories to get me in the 2,000-calorie neighborhood. My oncologist says that my weight has been going up and isn't dropping back down so if my weight is good when I see them, she'll order the tube removed - which means I get to go back to the lab so someone can just rip it out, which wasn't pleasant at all! But, as you might imagine, it's starting to bother me so I keep hitting it on stuff and it got interesting the other day when I was taking off my T-shirt to wash under my arms - and the PEG wanted to go with the shirt! No real danger of pulling it out but, fuck, that shit did hurt!

I just gotta remember to really check the ingredients of anything I drink that isn't water; citric acid likes to remind me that my throat isn't 100% healed yet...

[DD788Snipe]

It'll take almost a full year before your throat is healed. You're finding that you have to avoid everything acidic or spicy. Since I lost part of my tongue a few years ago spicy is totally a no go for me these days. It sets my tongue on fire. That really sucks because my taste buds are still not even close to normal.

[Grumpygrandpa]

I agree DDsnipe. It's been 16 years and I still can barely tolerate even mild oregano on my pizza. Anything more turns into a bad idea. Forget about anything from Taco Bell or other chains, when did burgers require extra spicy flame intense flavors? Almost as bad as flavored whiskey ...
Kids need to get back to basics and enjoy real flavors. But then I digress as usual. Take small samples of what you used to enjoy and work from there. Be patient.

[KDaddy23]

I've been learning that acidic and spicy are no longer my friends although I can tolerate spicy more than acidic - but some habits are hard to break when you don't think of them as habits, like how I love tomato basil soup... but my throat doesn't. Okay. Improvise, adapt, and overcome. It's hard to be patient when you have doctors bugging you about eating and, again, I'm the one to point out to them that if I can't swallow the stuff they want me to eat, that's a problem, ain't it? What I get back is, "Do the best you can!" and... what the fuck do you think I've been doing? Add in an image of me rolling my eyes so you can get the full flavor of this "duh" moment with learned doctors.

It's a process and one that includes learning some stuff the hard way because I don't know what I can eat that's not going to piss my throat off and that's going to cut down the things I can eat to maintain my weight so I can get rid of my PEG tube and... you see where this is going, right? I just sigh, kiss and make up with my throat, and keep it moving. I will say that my throat feels better today than it did, say, a month ago and when I had to make sure that I had an emesis tray nearby and handy because of all the spitting I was doing and with thick saliva trying to clog everything up so, yeah, today's throat is a major improvement... and it's not my fault that I didn't know that drink had lemonade in it before I found out it did!

I only needed one shot of magic mouthwash to calm my throat down; this, too, is an improvement and while my doctors are loathe to say how long it might take my throat to heal, they are happy with how things are going when they're looking down my throat; I've gone from "It's very red!" to "It's still a little red!" so, progress. The important part is that if any member winds up with this kind of cancer - and they've been reading my updates and stuff - they can have good idea of what they're going to have to go through - and you gotta go through it.

[julyguybill]

Glad you are healing wishing for the best for you

[DD788Snipe]

Your doing great KDaddy. I know that drill from the docs and nutritionist all too well. They know but they don't but that's OK. They have your well being as a priority but in order to do the job on a daily basis, they have to be non emotionally involved. That's the best way I can put it. You're doing great.

[Neonaught]

I've been learning that acidic and spicy are no longer my friends although I can tolerate spicy more than acidic - but some habits are hard to break when you don't think of them as habits, like how I love tomato basil soup... but my throat doesn't. Okay. Improvise, adapt, and overcome. It's hard to be patient when you have doctors bugging you about eating and, again, I'm the one to point out to them that if I can't swallow the stuff they want me to eat, that's a problem, ain't it? What I get back is, "Do the best you can!" and... what the fuck do you think I've been doing? Add in an image of me rolling my eyes so you can get the full flavor of this "duh" moment with learned doctors.

It's a process and one that includes learning some stuff the hard way because I don't know what I can eat that's not going to piss my throat off and that's going to cut down the things I can eat to maintain my weight so I can get rid of my PEG tube and... you see where this is going, right? I just sigh, kiss and make up with my throat, and keep it moving. I will say that my throat feels better today than it did, say, a month ago and when I had to make sure that I had an emesis tray nearby and handy because of all the spitting I was doing and with thick saliva trying to clog everything up so, yeah, today's throat is a major improvement... and it's not my fault that I didn't know that drink had lemonade in it before I found out it did!

I only needed one shot of magic mouthwash to calm my throat down; this, too, is an improvement and while my doctors are loathe to say how long it might take my throat to heal, they are happy with how things are going when they're looking down my throat; I've gone from "It's very red!" to "It's still a little red!" so, progress. The important part is that if any member winds up with this kind of cancer - and they've been reading my updates and stuff - they can have good idea of what they're going to have to go through - and you gotta go through it.

I had the opposite experience: I used to hate spicy foods but after healing I found I liked them more than before.

[DD788Snipe]

I did to and it made up for the loss of taste but only after my mouth and throat healed. Then when my cancer returned in 21 and I had to have a part of my tongue removed I could no longer tolerate anything very spicy. Black pepper is about all I can stand now.

[Neonaught]

I did to and it made up for the loss of taste but only after my mouth and throat healed. Then when my cancer returned in 21 and I had to have a part of my tongue removed I could no longer tolerate anything very spicy. Black pepper is about all I can stand now.

We certainly have much in common. My first bout was in 2010. Had chemo/rad and went into remission. Primary site was my right tonsil with invasion of the nodes in my neck. In late 2014 it returned where the tonsil had been removed and on the right margin of my tongue. 12 hours on the operating table and they removed it all and patched the defect with a big slab of skin and muscle taken from my left thigh. In the end, the 2nd bout really didn't do much to blunt my sense of taste, thank God! I love to cook and not being able to enjoy my food would have been a major blow to my daily morale. Unfortunately, I lost some of my front lower teeth where they had split my lower jaw down the middle and opened my face like a book to get to the cancer.

For those of us that have had radiation "therapy", DO NOT let any dentist pull any teeth without putting you through hyperbaric oxygen treatments before and after tooth extractions. My idiot dentist didn't know this despite me giving him details of what was done to me. The result was terrible! My lower jaw started to dissolve 18 months after the dental procedures and I had another 14 hours in surgery having 2/3's of the lower jaw removed and reconstructed from my right fibula bone. The damage done took almost 5 years to get past!

[KDaddy23]

Okay, reading that this motherfucker came back to pay you guys another visit isn't giving me warm, fuzzy feelings! Like Neonaught, mine started in my right tonsil, invaded my neck and the mass was frangible enough that a cough (and not even a hard one) had me fighting for my life. Now, as far as I know, I still have my tonsils but I'd prefer that this cancer not come back - and I've set the appointments that will reveal if it's gone or it went somewhere else and I hope it's gone because I still don't think I can go through chemo/radiation again.

[Grumpygrandpa]

I had all my teeth pulled the same time they took my voice. My oncologist told me the possibility of necrosis was high due to the location of my tumor at the time. Necrosis I was told was due to radiation remaining in the teeth and rotting the jaw from the inside. I figured if I was going to be out for one operation why no go for the package deal? I woke up silenced and toothless not knowing how long I'd been out. Everything was done in the Columbia SC VA hospital October of 08. Guess I was blessed to have good Dr's. Still clean after all these years. Hang in KDaddy everybody is different when it comes to your health.