Sorry man. I didn't mean to scare you!Originally Posted by KDaddy23
Sorry man. I didn't mean to scare you!
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.
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.
Last edited by DD788Snipe; Apr 23, 2024 at 4:50 AM.
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.
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.
"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!!!
Last edited by DD788Snipe; Apr 23, 2024 at 12:02 PM.
That's just fine for me since I think the best way to describe radiation is "barbaric".
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
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!
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...
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.
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 burnt mine. That thing was evil and I couldn't stand to look at it. Too much part of that bad dream.
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.
I picked 70s pop for an MRI. It's weird how they have everything replicated but without any metal for obvious reasons.
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!
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!)
I'll ask them about that Evoxac - thanks!
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....
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.
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!!!
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.
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...
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.
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.
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.
Last edited by KDaddy23; May 17, 2024 at 10:28 PM.
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