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.

[Neonaught]

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.

Sorry man. I didn't mean to scare you!

[KDaddy23]

Not even scared so don't apologize but, yeah, hearing that it came back for you guys still isn't making feel warm and fuzzy. I think I have enough post-treatment stuff to deal with and I'm not trying to think about (a) the cancer is still there or (b) it's gonna come back and pay me another visit even though I recognize the reality - and possibilities - of it happening.

Honestly, the thing that scares me the most is realizing that the mass could've fragmented while I was in the DR for my birthday but I stop being scared of that thought because it didn't happen and I don't want to hear, "Well, it could have..." - and that's not what really happened, not that I wanted or needed it to happen and from what my lady told me, the doctors attending me were surprised that it happened so I'm thinking that's saying something. The thing about having cancer is keeping your head on your shoulders and remaining as positive as you can even though, between chemo and radiation - and surgeries if needed - you're getting your ass kicked all through treatment... and then, here comes the post-treatment shit that they tell you about - and that's some real shit - and you really have to be strong, stay positive, and laugh at the funny parts of this because crying isn't an option.

[DD788Snipe]

Holy crap neonaught you are a total warrior. Your body has been through hell. I met a man in group therapy that my first ENTO rebuilt his jaw the same way as yours was. I've often wondered if he survived. Another guy had to have half his tongue removed, and Dr. Seagle took a piece of his calf muscle and grafted it on. I feel that I got off lucky so far. As far as tonsils go, I have none. The 33 radiation treatments burned them out. I had to laugh at my new ENTO. The first time I went to see him he looked at my throat and says "did you have your tonsils removed" I looked at him with my most quizzical look and I could see the oh shit look on his face and he sorta laughed and said "oh yeah, you had heavy radiation". Doctors practice every day. Seriously, they do.

[KDaddy23]

I'm almost sure that I don't have my tonsils since they were targeted by radiation. I am in awe of how the treatment regimen for this has changed over the years; my team didn't even say a word about any surgery except to say that it could be very involved and including having to rebuild my jaw and other structures and... they weren't going there. For me, thirty-five straight days of radiation treatment but chemo once a week for several weeks and, all in all, I probably am doing quite well and all things considered.

[Neonaught]

I would have required a hellava lot less treatment if the ENT Dr I was sent to had not been a total ass. This man was less a physician than a salesman. He was running an ENT practice, a snoring center, as allergy shot clinic and a medical weight loss program all at once! When I would go see him, he keep me waiting over an hour past my appointment time and then breeze into the room and immediately start trying to sell me over-priced vitamins or some shit. On one visit, I and a half dozen other patients waited over an hour and a half and could hear the guy on the other side of the building seeing weight loss patients. We were all so pissed off I led the others in a walk-off while telling his staff why we were all leaving! The prick screwed around for over a year as I had steadily increasing pain before he ordered the biopsy that spotted my now stage 4 cancer! After removing my tonsils and finding the right tonsil was 90% cancer tissue, he finally referred me to the team at The Methodist Hospital Texas Medical Center who got real treatment (chemo/rad) that saved me. Those Doctors were brilliant!

On the upside KD, I seriously doubt you'll ever be able to have any more radiation treatments. Sounds like you had a long course of rad than I and I was told that my rad therapy was the maximum amount anyone gets for a lifetime.

[DD788Snipe]

"On the upside KD, I seriously doubt you'll ever be able to have any more radiation treatments. Sounds like you had a long course of rad than I and I was told that my rad therapy was the maximum amount anyone gets for a lifetime."

I was told the same thing Neonaught. My ENTO told me that if I had that amount of radiation on any other part of my body it would burn a hole through me. Yikes!!!

[Neonaught]

"On the upside KD, I seriously doubt you'll ever be able to have any more radiation treatments. Sounds like you had a long course of rad than I and I was told that my rad therapy was the maximum amount anyone gets for a lifetime."

I was told the same thing Neonaught. My ENTO told me that if I had that amount of radiation on any other part of my body it would burn a hole through me. Yikes!!!

That's just fine for me since I think the best way to describe radiation is "barbaric".

[KDaddy23]

Barbaric is a word that I'd use as well. Sometimes I'd be lying on the table, unhappy with that damned mask, and thinking that even with better machines and being able to target more precise areas to radiate, radiation is... old school tech and it was a lot worse on me than chemo was; that was pretty much a walk in the park for me and what side effects I had from chemo weren't all that bad and easily taken care of. Some days I'd have to make myself get on the table and even though I knew I could "call it quits" at any time I wanted to, it didn't make sense to so... back on the table and just suck it up, drive home, lie down and take a nap because that daily regimen just wears on you.

[Neonaught]

Barbaric is a word that I'd use as well. Sometimes I'd be lying on the table, unhappy with that damned mask, and thinking that even with better machines and being able to target more precise areas to radiate, radiation is... old school tech and it was a lot worse on me than chemo was; that was pretty much a walk in the park for me and what side effects I had from chemo weren't all that bad and easily taken care of. Some days I'd have to make myself get on the table and even though I knew I could "call it quits" at any time I wanted to, it didn't make sense to so... back on the table and just suck it up, drive home, lie down and take a nap because that daily regimen just wears on you.

I felt much the same way. I developed a habit. Once strapped on the table with the emitter moving above me, the machine would make a loud buzzing when the beam was hot. I managed to distract myself by counting the seconds for each beam exposure time/position. The things we do to distract ourselves when being tortured! LOL

[KDaddy23]

Yeah, I did the same thing myself; I'd hear the buzz and... one, one thousand, two, two one thousand just to see how long the emitter head took to go from one side to the other and some days it took longer or would appear to get "stuck" for a moment or two and, yeah, the things you do to keep yourself occupied. I'd only be on the table for about ten minutes because the machine spent a long time... not doing anything before it would traverse in the opposite direction, taking as much as 15 seconds when zapping me.

Three passes and I'm done; on the third pass, I'd lie there and see if I could hear that massive door opening and the tech's footsteps and more than ready to get the fuck out of that mask...

[Neonaught]

Yeah, I did the same thing myself; I'd hear the buzz and... one, one thousand, two, two one thousand just to see how long the emitter head took to go from one side to the other and some days it took longer or would appear to get "stuck" for a moment or two and, yeah, the things you do to keep yourself occupied. I'd only be on the table for about ten minutes because the machine spent a long time... not doing anything before it would traverse in the opposite direction, taking as much as 15 seconds when zapping me.

Three passes and I'm done; on the third pass, I'd lie there and see if I could hear that massive door opening and the tech's footsteps and more than ready to get the fuck out of that mask...

I still have the sacophagus they made for me. I was going to burn it, but that felt like tempting fate!

[KDaddy23]

I get it; the moment you burn it, that's when they tell you that you're gonna need it again. Sometimes, the thing that kept me occupied while being zapped was... staying on the table. The damned thing is stupidly narrow and had my elbows hanging off the edge while having my hands holding a ring in my lap - and my feet were hanging off the bottom of the table, even with the wedge under my knees - but that poor thing has seen better days and should be retired.

I couldn't move my head but when it stopped zapping me, I'd shift myself into a more comfortable position if possible; some days, doing that just wore me out and I'd have some unkind things to say about that damned table...

[KDaddy23]

So, today, I had to go in to see the doctor who, apparently, put my original PEG tube in, because this thing has been bothering me something fierce and it's been interrupting my sleep, too. She examines where the tube goes into my stomach and sees where it's rubbing some places kinda raw, the whole area is red and bruised, and there's a lump at the top of where the tube goes into my stomach. She tells me that because of the cysts on my kidneys, they didn't have a whole lot of room to place the PEG - and she showed me the scans they took at the time the tube was place (and they'd knocked me the fuck out at that point) - and she pointed out that the little "anchors" that holds the balloon in place... are still inside of me. The buttons on the outside fell off (and I was told that they would) and told that the anchors would fall into my stomach and get pooped out.

Well, they didn't and, apparently, the only way to get them out is to surgically remove them, which a surgeon isn't going to want to do since I'm on the back side of chemo and radiation. Meanwhile, she blows my mind by shortening the disk thingy so that it's back in contact with my abdomen! I didn't even know it could be done and I blurted out, "How did you do that?" and I asked because just as she did it, I had blinked. Part of my problem with this PEG is the end where I screw in syringes to flush and get Osmolyte is "heavy" and tends to move around a lot, making the part going into my stomach move around; it gets hung up in my undershirts and wearing shirts puts pressure on it and, yeah, this thing is really bothering me but because my throat hasn't healed enough, removing it permanently isn't an option at this moment so I opted to have a different "head" put on that's really flat to my stomach and not moving around or swinging like a pendulum.

That requires me to undergo another replacement procedure. Scheduling it was a bit of a bear because my May is full of cancer-related appointments - and with a visit to my PCP tossed in for some routine stuff. My lady, who handles keeping track of all of these appointments, had to move my appointment with my oncologist for the next day since we figured that there's no way I'm going to be done with the replacement procedure to literally go down the street to see my oncologist - and even if I could make it, they're going to sedate me so I probably wouldn't be coherent enough to pay attention to my oncologist.

So, that's the latest thing going on.

[DD788Snipe]

I felt much the same way. I developed a habit. Once strapped on the table with the emitter moving above me, the machine would make a loud buzzing when the beam was hot. I managed to distract myself by counting the seconds for each beam exposure time/position. The things we do to distract ourselves when being tortured! LOL
I had my RT put Pink Floyd's Welcome to the Machine in the CD player each day for me. I still know every word in that song. Lol

[DD788Snipe]

I still have the sacophagus they made for me. I was going to burn it, but that felt like tempting fate!
I burnt mine. That thing was evil and I couldn't stand to look at it. Too much part of that bad dream.

[KDaddy23]

I had my RT put Pink Floyd's Welcome to the Machine in the CD player each day for me. I still know every word in that song. Lol

I couldn't stand the music they were pipig into the room! Too much C&W and other generic songs I didn't recognize; if I could have done it, I would have given them my phone so they could pipe in one of my playlists with my kind of music! If I had thought that the radiation wouldn't have destroyed them, I would have had my earbuds in and listening to my own music - and, one day, I got on the table with them in my ears but the girls caught it.

[elian2]

I picked 70s pop for an MRI. It's weird how they have everything replicated but without any metal for obvious reasons.

[KDaddy23]

Just an update: I was supposed to go get my PET scan on 05/06 but the approval from the insurance company hasn't shown up. I was wondering why it hadn't when the appointment was set up back in April and I learned that they just put it in earlier in the week. So, my PET scan got rescheduled and during a month where I've got a lot of appointments and what makes this "worse" is that I have to have the PET scan done before I see my oncologist on the 13th and given how slow I know my insurance company can be, this is about to get interesting - but I hope not because I really want to know what the scan is going to show.

My throat is still jacked up and sometimes it feels like I have something stuck in my throat (but I don't) and sometimes my mouth gets seriously dry and, some days, a combination of both. I need to get more protein in me and, yeah, if I could suck cock, I'd be drowning in protein right about now but that means beef, chicken, fish, turkey and I have to have these things in a way that isn't going to piss my throat off when I swallow them. Otherwise, I'm doing okay!

[Neonaught]

Rad knocked out my main salivary gland and dry mouth was a big problem. My ENT prescribed a drug called Evoxac that kicks your salivary glands into high gear. After a few years I didn't need it anymore. Check with your doc about it if needed. Insurance companies SUCK!!! (not not in the good way!)

[KDaddy23]

I'll ask them about that Evoxac - thanks!

[Bi-Rõnin]

Glad to see you're still here kicking.
Can't read your post though. Hits too close to home for comfort. Got a friend in VT that has colon cancer, coworker just diagnosed with a unknown tumor in his colon. Lost another coworker to cancer a few years ago. Lost an aunt to cancer and it runs rampant in my brother in laws family.

Idk what's worse, doctors that beat around the bush or the way i found out that i developed diabetes.
Routine DOT health card renewal. Doc walks in and asks "how long has your diabetes been out of control?"
Me: my what?
Doc: your diabetes is way out of control! Why havent you been taking... oh wait. You didn't know? Oh, I'm sorry....

[KDaddy23]

Yeah, some doctors love to spring surprises on you, don't they? I am so sorry for your losses, and I hope your friend in VT can be treated and maybe even cured.

[KDaddy23]

So, I had my PET/CT scan yesterday and I got the PET scan results back first and... no tumors pr other signs of cancer anywhere. The only thing "remarkable" was the inflammation around my PEG tube which reported a bit higher than my last scan but given how badly irritated it is, well, that's why it's being replaced - just not fast enough to make me happy. I won't see the CT results for a couple of days but I'm happy with the PET report and will discuss it with my oncologist in a couple of days.

[Neonaught]

So, I had my PET/CT scan yesterday and I got the PET scan results back first and... no tumors pr other signs of cancer anywhere. The only thing "remarkable" was the inflammation around my PEG tube which reported a bit higher than my last scan but given how badly irritated it is, well, that's why it's being replaced - just not fast enough to make me happy. I won't see the CT results for a couple of days but I'm happy with the PET report and will discuss it with my oncologist in a couple of days.

Congratulations!!!

[KDaddy23]

The only other thing of note is my bloodwork, which is still showing that my immune system is trashed but slowly recovering; my values are closer to being in the low normal range or high normal for that one reading and a TSH test yesterday shows that my thyroid is recovering albeit slowly and like everything else is. I will be so glad to get this PEG tube replaced in eight long days from now; last night, I went to roll over and the part that's dangling got caught under me and... I almost pulled the fucker out! The pain had me gnawing on my hand because I didn't want to awaken my lady and I didn't want to turn on my light to see if I'd done anything to the tube but a quick examination with my fingers "showed" that the tube was still in place, and I wasn't leaking or bleeding.

It's like the damned thing knows it's about to be replaced and it's fucking with me with little to moderate stabs of pain around the stoma and where the inflammation is. Lastly, the second CT scan that was ordered was denied by my insurance company and I'm not surprised because even I was wondering why I needed two CT scans of my head and neck when they did that during the PET scan - and I haven't gotten the CT results yet. And the bills keep coming in.

[Neonaught]

The only other thing of note is my bloodwork, which is still showing that my immune system is trashed but slowly recovering; my values are closer to being in the low normal range or high normal for that one reading and a TSH test yesterday shows that my thyroid is recovering albeit slowly and like everything else is. I will be so glad to get this PEG tube replaced in eight long days from now; last night, I went to roll over and the part that's dangling got caught under me and... I almost pulled the fucker out! The pain had me gnawing on my hand because I didn't want to awaken my lady and I didn't want to turn on my light to see if I'd done anything to the tube but a quick examination with my fingers "showed" that the tube was still in place, and I wasn't leaking or bleeding.

It's like the damned thing knows it's about to be replaced and it's fucking with me with little to moderate stabs of pain around the stoma and where the inflammation is. Lastly, the second CT scan that was ordered was denied by my insurance company and I'm not surprised because even I was wondering why I needed two CT scans of my head and neck when they did that during the PET scan - and I haven't gotten the CT results yet. And the bills keep coming in.

I had to start taking thyroid meds after my radiation. No big deal. They always do a CT with the PET since it allows them to see the anatomy when the two are combined. PET just detects a glow from increased radioactive glucose being taken up by cancer cells at a higher rate than normal cells do.

[KDaddy23]

Yeah, I remember my radiation oncologist telling me that cancer loves sugar and, um, so do I. Saw my PCP yesterday and he went over all the labs and read the PET scan report and he's happy with my recovery so that's a plus. I actually get a break in the cancer-related stuff with a phone call appointment with the people about my kidneys, which I'd been putting them off since I got out of the hospital in November last year - being treated for cancer took priority as far as I was concerned but this upcoming phone call will be more of the same: My kidneys are stable, my labs look good, call me again in six months or whatever.

Then I have the PEG replacement on the 22nd, followed by a visit to my oncologist the next day; between my appointments and the ones my lady has, May has been one hell of a busy month and June is starting to look a bit interesting...

[DD788Snipe]

I also had to start taking Synthriod after my treatments. Not a big deal. Sure don't envy your issues with the PEG tube. That thing was a real pain.

[Grumpygrandpa]

Been on synthroid since October 08. Manage to weigh between 200 and 230 since then. Spring time I'm more active so I'll drop some weight. Eventually you'll get rid of it all together. We're with you all the way.

[KDaddy23]

The good thing is that my TSH test is... normal so I'm not anticipating any issues with my thyroid although I'm curious as to why the test was ordered - but I'll find out on the 23rd. And lest I forget, I very much appreciate all the support and information I've gotten from you guys as I work toward being cancer free and staying that way.

[Neonaught]

The good thing is that my TSH test is... normal so I'm not anticipating any issues with my thyroid although I'm curious as to why the test was ordered - but I'll find out on the 23rd. And lest I forget, I very much appreciate all the support and information I've gotten from you guys as I work toward being cancer free and staying that way.

Every patiuent that has radiation any where near the Thyroid gets a Thyroid panel done to make sure the gland is still functional.

[sterculius]

As a result of smoking and asbestos exposure, I'm a recovering lung cancer patient. I had a lobectomy back in 2018, followed by Radiation and then Chemo. Chemo treatment put me into full diabetes and am now insulin dependent. CAT scans and PET scans have all been negative for the past four years. MSG oncologist calls me her "miracle baby". I still suck cock whenever the opportunity presents itself, but just wondering, has your cancer made you regret having become a cocksucker? Do you hope to resume sucking cock in future?

[KDaddy23]

No, I don't regret it at all; in fact, it still makes me laugh that I got cancer from my favorite sexual thing to do in the whole world: Give head and that includes eating pussy. And, yes, I hope to resume sucking cock and eating pussy in the future and as soon as my oncologist confirms that I'm cancer free. It sounds crazy, I know, but I think about how old I am and the other shit I have wrong with me and if the cancer returns, well, that would be concerning but, at the same time, I still have to live my life the best way I can and know how to - and for as long as I can. Now, if she doesn't clear me to have sex, well, hmm, I'm gonna have to think about that...

[Neonaught]

No, I don't regret it at all; in fact, it still makes me laugh that I got cancer from my favorite sexual thing to do in the whole world: Give head and that includes eating pussy. And, yes, I hope to resume sucking cock and eating pussy in the future and as soon as my oncologist confirms that I'm cancer free. It sounds crazy, I know, but I think about how old I am and the other shit I have wrong with me and if the cancer returns, well, that would be concerning but, at the same time, I still have to live my life the best way I can and know how to - and for as long as I can. Now, if she doesn't clear me to have sex, well, hmm, I'm gonna have to think about that...

You'll get cleared without a doubt.

[TRICK6969]

God Bless

[KDaddy23]

Well, she didn't clear me for sexual activity and one day after I got my new PEG tube, she wants it removed in four weeks - and provided I can maintain my weight. Now I have a PEG that she doesn't want me to use - and I'm not supposed to flush it which, personally, I think is a bad move and I might see if I can get her to reconsider that - I don't want it to get clogged up and cause me problems on top of the ones I'm trying to get rid of. She agreed that my lab values have been improving but it's going to take time since - and these are her words - "The chemo really trashed your immune system!"

As such, I'm not really that bummed out about not getting cleared for sex since, with my immune system still in the toilet, it could potentially get me sick, and I think I've had enough of not feeling good. I... read how I died on the table and how they resuscitated me by giving me blood, meaning that I'd bled out (and as I suspected). I don't feel fucked up about it anymore than I do about having to be resuscitated a second time and that's when they decided to trach me since I had just stopped breathing on top of continuing to bleed. I read the reports written by the doctors who worked on me and... I just nodded. Some of the local neighbors have been complaining about the hospital and its ER about poor service and long wait times and I laughed at the latest complaint because I know that the hospital's ER is a Level One trauma center which means that unless you're so fucked up that you're going to die, take a seat and they'll be right with you as they deal with the priority patients... like how I was when I was brought in.

I don't have a single complaint about the services provided that day, but it has been an uphill journey to getting back to some semblance of healthy. I know that what happened to me was a "freak accident" and one that, in the reports, confounded the doctors for a few because they couldn't figure out where I was bleeding from (all the usual places were intact) but they did figure it out and dealt with it and I really get to understand why everyone who has cared for me says, "Considering what you went through, you're doing great!" and are generally surprised that I'm doing great... I just wish that I felt as great as they insist that I am.

I don't feel sick, but I do feel tired - but that's my blood chemistry being out of whack - and I just push through, go to the next appointment, and see what the doctors have in store for me. My oncologist thinks there's something going on in my stomach that isn't related to my PEG tube - and something that showed some uptake from my first PET scan after being diagnosed - but the report doesn't say that it's cancer but, yeah, it's got her wondering what's up and me and my lady are wondering, too, so she wants a GI doc to scope my stomach and... yeah, I'm not looking forward to that because I've had that done before but more so because I've been poked and prodded and scoped so much to date that I ain't feeling this - but I'll do it anyway because it has to be done and, hopefully, it's nothing to be concerned about.

Otherwise, my brothers, I'm doing good, my weight seems to be holding steady, but we'll see how that goes over the next four weeks. My mind is in a good place and... man, do I seriously need to get laid! You should have seen the look on my lady's face when (1) I asked the doc if I could go back to having sex and (2) when the doc said, "No, not right now, okay?" I thought it was funny but I've been letting her know that when I do get cleared, well, she'd better be ready...

[KDaddy23]

Went to get a situation with my left ear taken care of and I'm kinda not sure if my cancer treatments had anything to do with it but, somehow, I had fluid in my left ear, giving me that swimmer's ear effect and driving me batshit because I couldn't "equalize" things and the hearing in that ear kept going "in and out" and depending on the position of my head. What I know is that I never had a problem with my ears until I had chemo and radiation and both my ENT and oncologist says, "Yeah, that could happen..."

After a course of steroids which, honestly, I don't know how that was going to help, I had to wait until yesterday for him to either drain the fluid from my ear or, gasp, put a tube in there to effect drainage. Well, he tells me that he might not be able to get a tube in there because of some narrowing so he numbed the inside of my ear/eardrum, poked a hole it in, and suctioned out the fluid - and my lady says that I did not want to see what it looked like. He did try to get a tube in there but failed; he tells me - and while my ear is making popping and clicking sounds - that when I come back in two months, if the fluid returns, he's going to put me out and get a tube in there and... I just shrugged and, for that moment, I didn't much give a fuck because now I can hear in my left ear and normally.

Related to the treatments? Apparently, it's possible. I'm still having issues swallowing so he's ordered a swallowing test and I remember having one a long time ago, but swallowing's been a problem from way back when I had my trach in. Nothing's getting stuck in my throat when I swallow but it feels like it and I still have this acidic taste in my mouth that increases when my throat gets pissed off from me swallowing "too much." I do and still laugh my ass off when talking about not being able to swallow because, well, you guys know why.

He read my PET/CT scans reports and agrees that there is no sign of cancer but as I've been learning, having the cancer isn't the thing that's been fucking with me: It's everything I've gone through to (a) get rid of it and (b) all this post-treatment stuff that, admittedly, they told me about and it all came true.