So I have cancer!

So sorry to hear it, nothing sucks worse than cancer. Hope the treatment goes well and please keep us in the loop if you’re able to do so!

Really sorry to hear this. I wish the best outcome for you.

Damn, man, what a shocker that must be for you…
Very upsetting news.
I wish you a speedy, and above all, smooth as possible recovery/treatment.
And kudos to your sister, too.

Well, crap. When I first saw the Q, I had all sorts of helpful advice that the medicos don’t tell you, but it mostly involves things you can’t do. (Chewing strong gum, for example)
I am so sorry you have to go through this, it really really sucks. I am glad you have your sister helping you, that is huge. I’m guessing that with 7 weeks of treatment, you’re doing chemo and radiation at the same time, double sucks. (I did that).

Shave your head so you don’t have to wash your hair, if you keep it. Anything, no matter how small, that you don’t have to do helps.

Accept any and all help about anything. Play the C card. Don’t waste any energy being brave.

Cursing and telling morbid and macabre jokes that make the people around you uncomfortable also helps. Write them out if you can’t speak.

Oh, and lots of different chemo are constipating. Be prepared for that. Ugh.

Make bizarre noises.

Good luck with this, @johnpowell, green light, good thoughts, prayers, whatever might help coming your way.

Good thoughts and positive energy being sent to you. I’m glad you have your sister for support.
And if you are able, please drop in here. If nothing else, just to say hello.
Awesome mask by the way.

Well its no longer a death sentence, John. They gave my mom three months upondiscovery, in eight places of her body, mets Stage 4 breast cancer. Eight years later she is cancer free, a lot more fragile but great.

Everyones experience is unique, so try to remain positive. Sounds like you have help and a place to live cheap, better than most people. Prayers for an easy procedure and smooth recovery buddy.

I am so, so very sorry @johnpowell. You can bet my thoughts will be with you especially hard tomorrow. Please let us know how it goes.

So sorry to hear and best wishes for a good outcome and not too much discomfort. What a crappy thing to have to go through!! Sending a flippery hug.

Oh man… That is a lot of crap to be piled on your plate. It is great that you have support. You’ll need it. I won’t lie. Once the radiation and chemo start you will feel like you’ve been through a blender.
But this will pass. And there is light at the end.
You are one of the most capable guys on the planet. You’ll pull through.

How can we help?

Oh man sorry to hear this, hope all the best and a speedy recovery.

In my experience, patients with these kinds of cancers do pretty well.

Yikes! Very sorry to hear that, and best wishes on the treatment and recovery!

Dang it. Anything I can get you that’s within my means, just say so, man.

I thought you had been pretty quiet recently. Sorry to hear the reason. I’m keeping my fingers crossed for you over here. Best wishes.

I’m so sorry, JP. I’m glad you’re back with your sister and have your family’s support. Hugs, love and virtual PBR from me. Also, check your PMs. <3

I’m so very sorry to hear this. This is a cancer I worry about, and it gets very little play in the media. When Michael Douglas tried to talk about it and inform people “everyone” in mainstream media and social media were total idiots, and caused him to backstep and drop it. It really annoyed me.

I’m glad to hear your prognosis for beating it is good, but it sounds like you have been through a lot of horrible things already trying to get on the other side of this.

Please let us know how you are doing.

Life doesn’t enjoy playing fair with you, @johnpowell. I’m saddened by your news and hoping for the best.

Hang in there Mr Powell, sometimes it’s all you can do. Your sister’s a gem.

https://www.cbsnews.com/news/oral-sex-and-throat-cancer-michael-douglas-hpv-report-spotlights-epidemic/

Holy shit. I had totally forgotten about that and the backlash. But yeah folks. That shit is real and I am proof. So get yourself vaccinated or whatever.

I’m pretty upbeat.

Really, I used to smoke and drink ALOT. And now I barely do those things anymore. Beer consumption is down about 95% and smoking is one or two a day instead of 20. And once I get the feeding tube in (13 hours) I will probably be eating better.

This all sucks but in the end I guess I am lucky that my liver and lungs are still top-notch (I have the scans to prove it). Maybe this is the scare (rock-bottom) that will get me to stop acting like I am still 20.

I meant to PM JP about this, but I figured it mist have been ok. I’m sorry. I tried to get the HPV vaccine when I broke up with my ex years ago. The doctor said that I was too old. That sucked…

You have my support JP. I wish you luck. Fight man! Don’t stop fighting.

Peace n love.

I’m not going to die. I have a irrational urge to see exactly how much I will be in debt after this is all over. Teeth alone were 30K. Pretty sure I am about 50K deep and treatment hasn’t actually started.

Awww, @johnpowell. This news is upsetting. Cancer sucks. It is a total game changer. Praying that your procedure goes well and that you’ll start to feel better soon.
When you feel up to it, try to learn all you can about your cancer and be your own advocate. If you’re not totally comfortable about the proposed treatment plan, consider a second opinion. No doctor knows everything.
If you are reading up on cancer, be aware that there’s a lot of crap and misinformation on the internet. If you are interested, PM me and I can send you links to the reliable sites.
Also, there are online forums where you can discuss your situation with others that have had similar experiences and support each other. If you want, I can send you links to those, too.
To give your sister some relief, are you aware that the American Cancer Society offers free rides to get treatment? See what they can offer in your location.
As for paying for the treatments, can you get on Medicare?
Fight on!!

Sorry to hear that life keeps dealing you more tough cards.

But glad to hear you keep giving it the middle finger.

We’re all rooting for you, JP.

JP. I woke up thinking about you and the journey you are going to take starting today. I do pray and said a prayer for you. Hugs.

Hey JP, I’m going to send a few picowatts of microwave energy in your direction. They’ll help keep you warm. Just go with the flow today. Good luck.

Sending 5…4…3…2…1…Now

This (today) is the worst part. You’ll feel physically worse, and weaker, later, but you’ll know what’s happening.
If these are going to be long infusions, take books to read/listen to. It’s really boring.

Leaving in fifteen minutes.

And yes, it is possible to hear someone roll their eyes. I asked my sister if we could get some Taco Bell after chemo. I am going to get Taco Bell, but she is not pleased.

Get well, John.

Best of luck!

Sorry to hear it. If it makes you feel better, in a real shitty way, we’ll all get cancer if we live long enough. Good luck!

Sorry to hear that. Get well soon buddy!!

Stay tough, I used to get a small pepperoni pizza and wash it down with Heineken Dark after treatment.

Oh dear. I’m so sorry to hear this. Please make sure to come to Fluther as often as you can. If we can’t do anything else for you, at least we can be your Fluther Family, where you feel comfortable. And we can tell you silly jokes, and post funny videos, just to get your mind off of it.

Let us know what you would like us to do for you <3

Hope you’re kicking some cancer ass right now, johnpowell.

Yeah, give it a dickpunch!

Does something need to have a dick to receive a dick punch?

Or does it just need to be a dick to receive a dick punch?

#deepquestions

@janbb and @raum Crazy kids, funny though!

30k to remove your teeth? Can that be right?

@knowitall Dick punch was a @Johnpowell saying. There’s a question somewhere on here about it.

@chyna Ohhhh, gotcha, not something you hear a lot.

Jesus, I’m so sorry to hear this news. I hate that bad shit happens to good people. I’m so glad you have a support system and that you’re getting the treatment you need. I’ll be rooting for you.

I’m horrified to hear about the costs, though. Are you uninsured? Do you have a GoFundMe that we could donate to?

The dickpunch that started it all.

I feel like we should all have Taco Bell, drink a Pabst and dickpunch someone today to show JP some solidarity.

So sorry.

You had your first chemo today, didn’t you? How are you?

This is terrible news, JP. I’m sorry.

My son has a mask like that. So I do have some idea. I wish you all courage, strength, and as much humor as possible.

There’s a thread somewhere that collects the Fluther memes. I can’t find it right now. Dick punch is on there.

Shitty news, but hopefully you will be feeling a lot better in a few months. Take care.

How are things now? So one day has passed since this thread went up

@Mimishu1995 Since he had chemo today, I doubt that he’s logging in right now.

Don’t ever be afraid to ask for help. The worst that will happen is someone will say no. You find out who really cares for you when you are at your worst and most vulnerable. The people who would never give up on you. Cherish these people. I wish you the best.

Well, shit. This makes me sad. But from what I know about you, you have a great attitude and I expect you to get through this just like you have so many other things. Be well, JP.

Yesterday was looooong. Radiation at 7:30 and I didn’t get out of chemo until 6. Feeding tube was in the middle. They went as far as putting me under and sending down the camera and for some reason that I do not know yet they couldn’t place the feeding tube. But there is a plan B to get the tube in. The radiologist said he is getting that going now.

@Mariah :: I have insurance for now. Pretty sure this is going to be considered a per-exsisting condition. So the future might not be so rosy.

Overall feeling pretty good. I ate three soft tacos from Taco Bell after chemo. I’m not going to tell my nutritionist about that.

@flutherother :: They did the removal in a actual operating room. I was on a machine to assist with breathing. The shit isn’t cheap.

What a long ass day for you. Will each day be that long?

@John Just make sure you get liquids in case your taste buds go out and nausea hits. Try to ride it out. I’m thinking about ya and sending good vibes.

What I love the most is the fact that you ate Taco Bells.

Oh man. What a misery @johnpowell. ((( ))) XOXOXO
Your Taco Bell secret is safe with us.

I’ll never ever ever tell. ;>0

Remember I’m the guy with pepperoni pizza and dark Heineken !

@johnpowell If you’re insured and getting treated by an in-network provider, you shouldn’t be getting hit with charges like this. The ACA mandates that all insurance plans have an out of pocket maximum of no more than $7,350 for an individual plan. You may have a case to fight your insurer on these charges. Let me know if you want help navigating; I’ve spent a stupid amount of time reading about how to protect myself from medical bills.

Anyway, the money isn’t the focus now – rest and heal. This treatment sounds like a nightmare, but you’re a BAMF and you’ll kick cancer’s ass.

^Take her help when and if you need it. Anything any of us can do to help you out, we will be happy to do so.

John, I am currently at Taco Bell eating a potato soft taco and thinking about you.

Hope everything from this point forward goes smoothly, and as painlessly as possible.

Happy Halloween today : )

Thinking of you, JP! So sorry to hear. But I’m also glad (though that sounds like the wrong word to use) to hear you’ve got a treatment plan and are taking it head on. Hope it all goes as smoothly as it can. ((Hugs)). Here for you.

@Mariah Maybe that mandate is for insurance policies in the ACA marketplace, and not a requirement for all insurance policies? I don’t know, I’m just putting it out there that possibly that is part of the problem.

^^^ Maybe that would be good for it’s own Q.

@JLeslie I’m not 100%, but I think it applies to all ACA-compliant plans, including employer-sponsored insurance. Here’s a source. The only exception is plans that are “grandfathered,” allowing them to break certain ACA compliance rules. The Trump administration has also very recently started allowing the proliferation of short-term plans which also break all sorts of ACA rules, but these have only been around for a few weeks now so I was assuming that that’s not the kind of insurance JP has.

Whoa! I forget we have a Meta section, I haven’t looked in here for maybe a year. Today it’s click and BAM!!!! WTF!!

I’m sorry to hear this, John, what an unfair twist. Very happy your are well enough and well-adjusted enough to share, your online friends are honored to lend a little support.

@Mariah The short term plans are being marketed heavily, and I’m not sure people really understand what they are buying when they buy one.

My husband was VP of benefits when ACA came out, and things might have changed, but the basic deal with large companies was if they don’t offer an affordable ACA plan that is compliant, then the company pays a huge penalty, so most large companies opted to be compliant. The government had rules about what is considered affordable.

@canidmajor That probably is a good separate Q, but I don’t think it’s bad to write it here too after Mariah’s comment and we all just want to help John have more information so if he talks to his insurance he has as much knowledge as possible. The OP can certainly flag it if he wants too.

@JLeslie, please ask it as a Q, I would follow it with interest.

How are you @johnpowell? Hope you’re having a nice Sunday. : )

Sleeping sooo much. But the first week is done. Last treatment is on the 17th of next month. So one day at a time.

Losing my taste kicked in a bit faster than expected. Pretty much now everything tastes of nothing. But it appears this can go one of two ways. The first one is that all you really want to eat is vanilla yogurt since your taste but are hyper-sensitive. Or you just want to eat unreasonably spicy things. It appears I am going towards the spicy. I guess that is actually the better of the two outcomes.

The good thing is my taste will come back. Not all the way but it will come back.

The no teeth thing is getting old fast. It is incredibly important to eat but it is a massive pain in the ass. Good news is try #2 on the feeding tube is being done Tuesday. Apparently #2 only differs from #1 in that they have a ultrasound machine in there to help find where to poke through. You would think they would have had one in there just in-case the first try didn’t work out. Getting prepped for surgery again is not fun.

But overall doing pretty good. And it was nice to not pay any rent or utilities this month. I’m going to tuck away some cash so I can have a vacation after this is over.

Keep it up JP! We’re all pulling for you….

Wishing you the best. Strength and courage to you.

Are you going to vote?

Already done. We vote by mail here.

Fuck man! I am so sorry to hear about this @johnpowell. I am sad but glad to see you’ve been poking in and seem in good spirits.

Bear ((HUGS)) and best wishes for the best of outcomes.

<3 <3 <3

I’m sorry to hear this. Please do the healthy things, and remember to continue posting here. It is important to remember others care about you, and your being on social media sites should help with that.

Getting chemo right this very second. They have a soft serve ice cream machine in here. I am destroying it. Hopefully taco bell for dinner.

Shhhh!!

How you feeling? Is the soft serve free?

Oh yeah. Everything is free. Free ice cream, free soup, free juice, free candy. It is the only place where they are really happy that you are even managing to eat at all. The nutritionist was just here dropping of a fuckton of Ensure for me to take home (she is loaded in samples).

edit :: fuck this. Insurance won’t cover the slurry for the feeding tube or any supplies or training on how to use it until I can no longer physically eat. That is going to require a creative solution.

The chocolate Ensure isn’t bad if it’s cold. I didn’t like the vanilla at all. I’m sure it’s just a matter of preference though.

Eating healthy doesn’t matter. Eating matters. As one of my oncs told me, “We’re beating the crap out of you trying to kill stuff. A healthy, organic, meal won’t help at the moment. Calories and comfort will.”

Keep your pecker up, JP!

^^^^ ROFLOLL!!! Did you really just say that??!

Try Soylent. More palatable than Ensure and nutritionally complete rather than being like 90% sugar. Cheaper too, I think.

I recommend the chocolate flavor.

Soylent Green is people.

My nutritionist came through. She said she was going to send some samples of the feeding tube slurry to radiology so I could pick it up today once that was over.

She came through BIG-TIME. She sent a tripod thing to hang the bags from, and the bags, and about a months supply of the slurry. So problem solved.

https://i.imgur.com/ncxZzFc.jpg

Excellent! Thank heavens for good people. Glad that worked out man.

I’ve been reading this thread the past few days without posting.
I haven’t known what to say.
Words can do little for making one feel better, but knowing how many people care about you and want their words to help somehow does.
You are going to kick C in the ass.
Thinking of you, and waiting for you to tell us it is over and you are gaining strength.

^Amen Patty. Maybe we can focus on JP, and send a collective of positive energy.

I can’t wait to celebrate when JP is C free!

John, your positive attitude will help you dick punch through this.

I think a tee shirt/bumper sticker is in order…

DICK PUNCH CANCER in the DICK

Make sure you are getting enough calories every day. It is hard to make it up later.
Based on my guestimates for your age, height, weight, and activity level, your Basal Metabolic Rate is about 1550 Calories per day. That is the amount of energy your body spends: breathing, repairing damaged cells, circulating blood, thinking, and maintaining body temperature when you are bedridden or not active.
The most important thing is to get calories into you. Sure, proper nutrition is important but first order is to get those calories – even if you are sucking packs of Pop Rocks or slurping jello or Junket. And remember to do it every day! One lazy 1200 calorie day means you have to eat 1900 calories the next day – and that is really a chore. Stay on an even keel.
I’m sure the nutritionist told you this stuff already. I’m just reminding you.
We all want you to be around for at least another 30 years.
Now get busy and slurp something! That Junket isn’t going to eat itself!

FYI: Jello (Leroy NY) and Junket (Little Falls NY) are relatively local products. From our table to yours!

You don’t want Bill Cosby to have to come and feed you the Jello, do you?

^^Bahahahahaha…

Just got the feeding tube in. That actually wasn’t horrible. It just took 2 hours.

But this is messed up. I stopped eating and drinking at midnight last night. And when I got in here they said after the operation I can’t eat for another 24 hihoursurs. Only water and I think some juice. This is going to be brutal.

But on the bright side the meds are top-notch.

^^ Yay for the meds. Stay high; I meant hydrated!

Get fucked up on said meds if you can, you deserve it!!!

Glad the tube is in. That will make things easier soon enough.

Hopefully you can sleep through much of the wait to eat.

(Don’t look at my avatar)

Good luck, JP, and stay strong.

First thread I check in the morning.
And last thread I check at night.

Quietly rooting for you, man.

Just got home from feeding tube. Got lots of pills so pain shouldn’t be a issue. Overall feeling pretty good.

Two thumbs up

So… will you be able to eat real food again?

Yup.. I actually had manicotti for dinner and fish and chips and a strawberry shake for lunch.

The feeding tube is more of a supplement right now. The thing is eating is going to become more difficult as they keep radiating my mouth and neck. From what I gather in a few weeks the feeding tube will be the only reliable way to get stuff inside me. So they wanted to get it in now.

And yeah. If anyone wants to see the tube.. (KINDA GROSS Possibly NSFW) Here You Go

LOLL!! So, you just dump your O’Douls right into the feeding tube? Sounds like a plan to me!

Made this for you @johnpowell

DP

Love it @cookieman! I also scrolled through your other pictures. They are fantastic!

awww, thanks @chyna

@cookieman Did you take all of those pictures? they’re wonderful!

@john if I ever go to the US, will we be able to eat KFC together? :’(

Oh! The three of us! Big bucket and all the sides!

@ARE_you_kidding_me: Yup, that’s all my photography. Thank you so much.

@Patty_Melt: and biscuits!

Lordy, yes biscuits!

Maybe Dutchess can make some dick punch out of that giant can of pineapple juice she has.

Next time anyone of us goes to Taco Bell, let’s pay it forward and buy a taco for the person in line behind us : )

LOLLL! That would seriously hurt!!

Speaking of biscuits, I will just leave this here:

Red Lobster Cheddar Bay
Yield 10 biscuits
These copycat biscuits are unbelievably easy to make in just 20 minutes, and they taste a million times better than the original!
Ingredients
• 2 cups all-purpose flour
• 1 tablespoon sugar
• 1 tablespoon baking powder
• 2 teaspoons garlic powder
• ½ teaspoon kosher salt
• ¼ teaspoon cayenne pepper, optional
• 1 cup buttermilk
• ½ cup unsalted butter, melted
• 1½ cups shredded sharp cheddar cheese
•
For the topping
• 3 tablespoons unsalted butter, melted
• 1 tablespoon chopped fresh parsley leaves
• ½ teaspoon garlic powder
Instructions
• Preheat oven to 450 degrees F. Line a baking sheet with parchment paper or a silicone baking mat; set aside.
• In a large bowl, combine flour, sugar, baking powder, garlic powder, salt and cayenne pepper, if using.
• In a large glass measuring cup or another bowl, whisk together buttermilk and butter. Pour mixture over dry ingredients and stir using a rubber spatula just until moist. Gently fold in cheese.
• Using a ¼-cup measuring cup, scoop the batter evenly onto the prepared baking sheet. Place into oven and bake for 10–12 minutes, or until golden brown.
• For the topping, whisk together butter, parsley and garlic powder in a small bowl. Working one at a time, brush the tops of the biscuits with the butter mixture.
• Serve immediately.

Can’t find my slippers.

Oh hey @johnpowell… : )

How did we get to biscuit recipes?

Sending caring JP!

Dutch. I worked at Red Lobster in my early 20’s. If you only knew the horror those fucking biscuits caused, you would burry that recipe where even Indiana Jones couldn’t find it.

I chickened out today. I was in line at safeway and there was a annoying kid in line behind me. I was so very close to whipping out the feeding tube and giving myself a syringe of Gatorade to give the little fucker nightmares for weeks.

But I couldn’t bring myself to do it.

^Good to hear!

@janbb it started with this comment

@MrGrimm888, oh I’m sure. Every food place has it’s horror stories. I’m still going to make them though.

@johnpowell It’s the thought that counts! Glad to hear you still got it!

The convo was not about biscuits. It was about KFC, and having solid foods again. It was not a recipe share. It was looking forward to JP’s full recovery.
Why would anybody go to KFC to celebrate, and then dash home to make biscuits, especially when KFC biscuits are the bomb?
Although, I bet JP will be jonesn4bakedpotatoes to pile high with cream cheese.
From the looks of the photo above, we need to fatten up that boy. :-D

I just thought he might like the recipe.

I doubt he’ll have much energy or desire (mouth cancer, remember?) to do any real cooking for quite awhile. Even fairly low dose chemo, when done at the same time as radiation is cumulatively e hausting, not to mention the general yuck factor.

Next time @johnpowell but remember, pics or it never happened.

How are you today @johnpowell?

Chemo was a nightmare today.

They just couldn’t find a good vein. I got poked four times by the first person. She gave up and handed me off to someone who got it in two tries. And the one that finally worked didn’t work that well. At this rate next week will be impossible since chemo messes up your veins and it get worse and worse.

I talked to the oncologist and he suggested this implant thing they put in your upper arm. Apparently it is like a headphone jack that is just hardwired into a vein. So instead of the needle BS they can just plug me in and I will be good to go. He said it is nothing compared to getting the feeding tube. I am loath to have another thing hanging off of me but I don’t think I have a choice here.

I had chemo at 11AM and radiation at 3:40PM. Which should have worked. But since it took two hours to get a needle in me (lots of heating packs and steamy blankets to expand the veins) it was 1PM before the could even start the saline. So 3:20 rolled around and I called radiation. They were desperate for me to come in since I don’t get radiation on the weekends.

So they just disconnected me and I hopped on the TRAM to radiation. And once that was done went back down to finish the infusion. I finally got out of there at 6PM. It was a long messed up day.

I did get Taco Bell on the way home.

@johnpowell Remember that person who poked you 4 times, and ask for someone else if she is the one coming at you with the needle next time.

It was just over a year ago I was hospitalized for a week. It was a nightmare. Almost all their phlebotamists couldn’t find a vein if you ripped it out and handed it to them.
I took names after the second day. They were taking blood a lot, at least once a day. I had bruises all over both arms. They needed to redo my IV, and they collapsed one vein after another. The life flight nurses were brought in. They tried a vein on my chest and blew that.
I begged to be sent home. I finally declared I was leaving. The doctor told me if I left before he cleared me, I would be declared dependant and put in a care facility. They failed to get a new IV started, so he finally agreed to send me home.
If you find someone who can get a vein, get their name. Also, ask whoever is successful to explain your vein to them. For instance, I have learned my veins have rubbery walls, but are tiny on the inside. That means they have to use force to get in there, but finesse to keep from going right through the back.

I’m sorry you had a rough go. I hope things get better.

Sending a hug, @johnpowell <3

Sorry it was a rough day @johnpowell. ((HUGS)) indeed.

@johnpowell. Get the port (aka the headphone jack). So much easier and less time spent getting jabbed. I had one for six weeks and it wasn’t bad.
Hugs!

What @chyna said. Get the port. They never offered me one and my arms looked like mottled pewter by week 5. Like others said, find the best sticker if you can.

Hugs @johnpowell. ((((♥♥♥)))
And I so agree with the port. In my experience you won’t even realize it’s there.

The PICC will make life much easier JP, and insertion and removal is a piece of cake. Just be super careful to keep it clean. Your immune system is compromised and an infection is the last thing you need.

Yes John, listen to Mariah. She has been there, done that, with almost every kind of invasive medical procedure and has lives to tell the tale.

Checking in to see how you are, @johnpowell. I’m sorry you’re going through this, but you’re tough and WILL kick cancer’s ass. <3

@Mariah :: They were talking about how I can’t get it wet and that there are only certain nurses trained to changed the dressing.

EDIT :: SOME GREAT NEWS…. After radiation today I saw the doctor and they sent the scope down my nose into my throat. I saw before and after pictures of the tumor. He said it looks like the tumor has shrunk by about half just after two weeks of treatment. He said everything is looking great… I WILL SURVIVE this.

Fuck yeah!!!!

And yeah, keep your dressing dry. You can wrap it in Glad Press n’ Seal for showering.

Such wonderful news John!!! That burrito supreme is just waiting for you <3

That is excellent @johnpowell!! Shrink that bastard!!

I’m happy for you, very good news!

Yay!!

This one time when shrinkage is great news!

Great news!

All righty!

Oh wow! That was fast! Great news John!!

I think about you every day. So glad to hear the treatment is working.

Whoohoooo!
Fuck you, cancer.

Oh man, I am so relieved to hear that.

Great news! Keep fighting!

Tumor shrank from the mere mention of dick punch.
Bwahahaha!

WOOOoooOOoooOOOOT!

Suck it cancer!!

That is SO GREAT TO HEAR. Keep on dick-punching, jp.

We can finally eat KFC together!

Keep up the brave fight. You are getting through this and everything else will seem minor from now on! Bravo!

The first two months are the worst and the second two months – well they are the worst as well. After that things will get better. Jack Klugman the actor had throat cancer twice and lived to 90!

Beard started falling out this morning. Not sure if from the chemo or radiation.

Not a huge deal. I was expecting that to happen a while ago. And I have always hated shaving anyway.

How are you feeling now? Any better?

Hi there @johnpowell

I’m actually feeling better than I did at this time last week.

This whole ordeal has changed my perspective a bit. This week I have started working on two things. First is going back to school. I think I am going to do a two year program for “server administration” stuff. I already have a job lined up once I start taking classes. My sister used to bang the guy that does the hiring for a large government agency. I already got approved to attend so now it is just working on the FAFSA stuff. That isn’t hard since I am so old.

Second is cleaning out shed on my sisters land. They have a pretty good sized shed about 20 feet from the house that is just storage right now. I’m going to start doing cabinetmaking in there. But I have come to realize the brutal expense that is woodworking. The list of tools I need keeps growing and this shit isn’t cheap. I have cancer so the sane thing to do is get as many credit cards as I can as fast as I can. (kidding). I will just try to slowly get what I need as I need it. And start with making small stuff I can sell to finance the tools needed for more ambitious projects.

So I guess the plan is sort of get healthy again, try the woodworking thing during the summer, and then start school in September.

Planning for the future and keeping busy is helping to keep my mind busy.

John, when you are ready to start looking for tools, go to estate sales. My brother got some very good deals that way.

Yes, auctions! I have seen tools of various types go for dirt cheap at estate auctions.

I am so excited to see the plans you have for the future. Partly because it sounds like you have been really thinking things through, also because forward thinking is very important to cancer recovery.

@johnpowell I love hearing about your newly inspired thoughts for the future.

Maybe you can work a deal to do a job for free labor if someone takes a chance on you and funds the machinery. Also, when I worked in construction they were always looking for framers, maybe that’s a way to be around wood and who knows where it will lead. One friend if mine’s husband builds staircases for residential homes. That’s his speciality and now a fairly large builder uses him for all their two story projects.

Where I live there is a group that can use a large woodworking facility for free. Maybe there is an association near you. The group here makes items for themselves and to sell, and the also donate a ton of gifts to children for Christmas (wooden planes, cars, blocks, all sorts of “old-fashioned” toys, it’s really lovely. They sell those items too, and give proceeds to children charities.

@johnpowell John, have you any tools yourself already?
Hand tools, I’m talking about.

The advice from @chyna to go to estate sales is spot on. I was just about to say the same thing.

Surrounding you with hugs, and I am SO glad you are feeling better!

Hey JP. I haven’t been around much in years… but I remember you and have always had great respect for you. I’ve sent this Q to my husband (@fireside) and he sends you his best. I’m working on my PhD in public health and am well acquainted with HPV and the various cancers it causes. I am so impressed with your attitude, outlook and plans for the future. It sounds like you have a lot going on but also have some social support and a great perspective. If there is anything I can do for you, I would be honored to have you reach out and ask. You’re in my thoughts and hopes for a peaceful and rapid recovery with great confidence in your treatment team.

Wow. So well stated!

Hey @Cupcake! I have missed you. And I didn’t know @fireside was your husband. I haven’t seen him in years. Tell him to check in!

Hi @Cupcake! Great to see you!

Cupcake!!!!!!!!

How are you today John?

@johnpowell, I don’t know what your chemo protocol is, but after week three I was starting to taste the chemo during the long infusions. I chewed really strong mint gum during, but since that’s probably not an option for you, I recommend something like Altoids to mask that.
I was on a platinum drip, it was icky and metallic.

Hang in there.

Still alive. The radiation is just starting to take its toll. They weren’t joking about it starting to burn your skin. Now I know why they have boxes of Calendula Cream everywhere at the radiologists. You can just take as much as you want.

The other day I went upstairs in the morning and the first thing my sister said was, “You finally look like you are on chemo.” :-(

I’m still able to eat and drink normally. So there is that. To be honest, I’m kinda going to be pissed if I got the feeding tube for nothing. That wasn’t/isn’t pleasant. But I will be very glad if I do end up needing it. There is no way I am in good enough shape to have one put in now.

Back to sleep. Just three weeks left.

Thanks for reporting in, JP. Keep up the good work!

Just three weeks left.

So past halfway, this thread is three weeks old. Most people have not been tested like this. You’re kind of Superman now.

Hang in there @johnpowell. We’re all rooting for you.

Hang in there John. We’re thinking of you.

So glad you have your sister.

Getting the feeding tube is not for nothing.
Even if you don’t need to use it, you know from experience how important it is to not wait. That first hand information could be valuable to someone else later.

I’m sorry things are taking such a toll on you. However, I have full confidence you will come through and be strong as ever.

Hang in there, JP.

I think of you every day! I started to watch “The Kominsky Method” and there you were!
You’ll kick this! (And I’m betting you’ll eventually be in better shape than when you started.)

Hang in there @johnpowell. Had an Uncle who had throat cancer and beat it. Continued enjoying his life. He already passed away but the cancer wasn’t the cause.

And steer clear of the kryptonite.

I hope they have Taco Bell flavoring for the feeding tube : )

I hope this all goes well, and that you are back to “new normal” very soon.

Happy Thanksgiving, John.

LOL.. I started getting bills. Radiation is 3K a pop. 35 days of radiation. Chemo is 10K a day. Seven of those. I just have the bills until the 13th. Already 100K deep.

Thanks obamacare. <—Not sarcasm

But overall feeling pretty good. I was able to eat a cheeseburger tonight. It wasn’t pretty but I got it down.

Mmm… cheeseburger :)

Taco Bell for you guy .

Is this the amount you’re being billed yourself or is your insurer picking most of it up? I just don’t want you to be taken for a ride on top of everything else. Bills like that are not legal. Please do PM me if I can be of help.

^^ Yeah, tell us that those amounts are pre-insurance @johnpowell.

Insurance seems to be covering it. But to honest I’m not really keeping the best tabs on things. Trying to keep the stress to minimum until I get the word that the cancer is all gone.

Yeah understandable. I’m glad they seem to be covering it.

Thanks for keeping us updated. You’re on all of our minds these days.

@johnpowell Yes, don’t worry about the bills for now. They will be sorted out in time. Get well!

That’s good JP, but certainly stay focused on getting better. Bills later.

Plus, if they try to fuck you over…I know people.

I’m Sicilian.

Keep eating Taco Bell !

Thinking of you today, JP. <3

Going on Two Weeks left? You’ve got this!

I now know what it is like to have a sunburn on the inside of your mouth and on your tongue. Swallowing is difficult. And I am getting lots of bloody noses. I do have a mouthwash that helps with the pain but it doesn’t last that long. I mostly just use it before bed to help with falling asleep.

Pretty much all food/drink is now coming in through the feeding tube. So really glad I had that bad-boy installed. I am sure I would die without it.

Nine radiation treatments left. I can do this.

Thanks fr the update. We worry.

Only Nine left! Great! You’ll be ringing the bell soon!
In the meantime, just breathe.

The homestretch is rough. Sleep all you can. Good luck, @johnpowell, go back to bed as soon as you can.

Nine! Almost there!

Hang in there.

Definitely take all the drugs they allow you to take. Don’t suffer needlessly.

That burrito supreme is waiting for your mouth as soon as you are all healed up.

You will be with each of us, in spirit, at our holiday dinner tables : )

Thinking about you every day @johnpowell. I’m thankful for this Q and the updates you give us.

Additional Motivation: Get through this @johnpowell and I will gladly ship you oodles of my wife’s homemade brownies.

Given the array of baking, cooking, buying talents here in the lagoon, I suspect we could fill your mailbox (and belly) right quick.

More ((HUGS))

Oh dear. You poor thing. Can you get anything soothing to your mouth, like cold Jello or ice cream, down? That must be so uncomfortable.

When he gets through this we’re just going to have to plan a feast. I mean, we all go out in our respective towns, but all at the same time, and keep track of everything we eat and drink in @johnpowell honor!

I think I’m going to try every vegan restaurants near me then!

Stay strong JP. We’re with you.

it’s 6:30 a.m. Getting ready to leave for work, but had to do my JP check first. Now I can leave. Have a good day, Honey. (((( ))))

We haven’t had an update in a bit. I hope you are doing well. Radiation is almost over.

Thinking of you, JP. <3

I came back to fluther for nostalgia, not for bad feels about familiar people :/ best of luck, fuck cancer.

Yes fuck cancer.

And the best way to “fuck cancer” is to fund research. In this case, pertaining to @johnpowell’s case specifically, here is a place to start.
https://oralcancerfoundation.org/facts/?_ga=2.32913531.419240832.1544790045-1834394358.1544790045

@johnpowell….?

Hopefully he’s sleeping as much as possible and may not have the energy to check in. The effects of weeks of radiation and chemo are cumulative and overwhelming.

I hope so @canidmajor.

certainly hope he is okay

I am confident he is.

We are here whenever John Powell is ready.

I went to Taco Bell 2 days ago, and was thinking about him : )

I’m alive. Just sleeping a lot. All food and water is coming in from the tube and I am pretty low on energy.

But chemo is over and tomorrow is my last day of radiation. So hopefully the mouth starts healing soon and I can start eating again.

Good to hear JP!! Rest up.

Big sigh of relief. That is such good news. And the end to this misery is in sight.
Go back to bed now.

The last bits of the long meds train; keep on keeping on, John!

It’s a hard road back, @johnpowell, rest and recover.

Glad to hear that you are almost done with the treatment John : )

So glad to hear you’ve been resting. Sleep brave sir. Sleep and dream of a gaggle of living Jellies surrounding you.

I hope you will finally have enough energy for Christmas and New Year :)

Great news! Taco Bells is on standby.

Whew! Thanks for the update. We worry about you. (Gosh! Does that mean we care?)

Once you ring the final radiation bell you are on the way back into the real world.
Relax. Sleep, take nourishment, and rinse your mouth. Life will be waiting for you in a few more weeks.

Thank you so much for the update. I’m so glad you are near the end of the treatment.

Great. I can breathe a little easier now. Hang in there.

@johnpowell I am so sorry to hear of this illness, but I’m glad to read that you completed the treatments and will be healing. I hope your recuperation is easy and quick.

So was today, Monday, his last day of radiation?

It was… My next doctors appt is in two weeks. I got to ring the bell and take my mask home today. In three months they want me to go in for a PET scan to make sure the cancer is gone.

Now it is just time to try and put on the weight I lost. I’m down around 25 pounds.

How are you feeling now?

I think taco bell can help with that once you’re feeling better. Congrats on getting through the treatment gauntlet!

25 pounds hmmm… Let’s do some first order math. Not active,, height .. weight… age… 0% body fat…. You need minimum 1400 calories per day. Now let’s fatten you up with 30 pounds in 2 months, 60 days…. 3000 cal/pound x 30 pounds / 60 days = 1500 calories per day above your base 1400 per day = 2900 calories per day. Walk one mile per day and that will make it an even 3000 calories per day.
Slather on some lip balm and slurp down some Jello and Junket! (Make 4 servings at a time.) Now get busy!
By Valentine’s Day you’ll be a dating hunk! :-)

Ulysses Benjamin Phunee ^
<U. B. Phunee>

Good to hear the treatment is over! Now get fat. Are milk shakes easy to drink, lots of calories there.

Thank you so much for the update, JP! Rest as much as you can. <3

Ahhhhhhhhh…. that’s the collective’s collective sigh of relief. Keep resting, keep recuperating, and know we’re all ready to take on Taco Bell with you!

Very NICE! John… : )

Hopefully, you can now rename this thread “so I don’t have cancer”.

@luckyguy, who used to be @worriedguy, can help you with that.

Good. Thanks for keeping us informed, that made it less scary.

<3

Good to see you @ANef_is_Enuf.

I CAN EAT AGAIN!!!..

The radiologist said I should wait until June to get dentures because there are glands and stuff that take a long time to heal. But at least I can eat eat soup again.

Oh, that’s great! In June we shall have a Taco Bell feast!

How you feeling, man?

Very good news, and I can imagine the joy you must feel about that.
Here’s to a great, healthy new year!
I hope you will recover (as) quick and smooth (as possible)!

That is great news!!! That will keep the pipes moving. Don’t forget to have some melty chocolates. You need the calories. :-)

Drink milkshakes!

Yay. Blend up that Taco Bell and drink it.

I’m so happy to see you JP on this thread! Sounds like you are on the upswing.

So glad your recovery is coming right along!
I know the heavy weight of a dx, and the relief of learning you will survive.
You beat C, and you will come through this.

Excellent news!! And good timing for soup, at the beginning of winter.

So, with the dentures…you thinkin’ any gold caps?

More Taco Bells for John!

Unfortunately milkshakes are out for now. The radiation messed up my taste buds. Sweets taste really weird now. I just can’t eat them. But the good news is it isn’t as bad as used to be so hopefully I will be able to eat them again.

Good nrws indeed!

I’m very happy, and proud of you JP. I can’t imagine going through this. You seem to have handled it with aplomb. You’re an excellent example of how to get through shit like this. Bravo sir. Bravo!

Good news!

I’m so glad to hear that you are feeling better John, and that you can eat soup.

Here is a yummy sounding, nutritious soup made for post cancer treatment :

https://www.evermine.com/blog/get-well-soup-nourishing-bone-broth-mushroom-and-vegetable-soup/

And a delicious tomato soup (and more recipes if you scroll down) from the Dana Farber Cancer Institute:

https://www.dana-farber.org/health-library/recipes/creamy-tomato-soup/

Happy eating, or rather slurping, my friend : )

Happy New Year, John.
Hope this one is better than the last.

Happy New Year John!!!

Happy New Year @johnpowell! : )

Hey John…making potato soup with onions and bacon and carrots and thinking of you. The broth would sure cure what ails ya. Wish I could get some to you.

Happy news for a happy new year! <3

Happy New Year, JP! Gain strength and peace.

Happy, Better, New Year JP. This is much dick punching in your future sir.

Still alive.

But I woke up this morning and noticed the feeding tube had slid out about 2cm. So I had to shove it back in and that wasn’t easy. But I got a appointment with someone at interventional radiation in the morning and it sounds like they are going to replace the tube. But it sounds like they can do that with just a local. Hopefully I can get one of the buttons instead of this long tube hanging out of me.

@johnpowell How long did they estimate you would need the feeding tube?

Good question and I have conflicting answers. They said after six weeks it can be removed but I don’t think that takes into account my lack of teeth. The radiologist said he wants it to stay in until after the next PET scan to make sure the cancer is all the way gone. It would suck for them to remove it and then the cancer isn’t all the way gone and they would have to put it back in. But I have to see the radiologist tomorrow too so I will see what he says.

Sad thing is I am starting to like the tube. It makes keeping hydrated so easy.

@johnpowell Well, at least there is one positive with the situation (being hydrated).

I don’t remember if they already took molds for false teeth for you? What’s the plan with all of that?

Wish you the bestestest year of your life, John.
Kick it!

No molds yet. They didn’t really have time. The cancer was pretty aggressive and they went from extraction to starting radiation and chemo in about a week. And when I talked to the radiologist last week about dentures he said I need to wait 4–6 months to heal before getting them. Apparently there is still a lot of healing to do even though everything is feeling pretty good in my mouth right now.

I’m going to ask today about getting them and seeing if that would be alright if I only put them in when I eat and then take them out right away. I’m getting pretty sick of soup.

^Hang in there JP.

Still thinking of you often. You’re doing great.

@johnpowell I hear you. As much as I like soups, 3 bowls a days for a long time sounds tiring.

Glad to hear from you @johnpowell!

I think it is a very valuable journey you have been sharing with us. You are a real sport openly posting, and keeping us all updated.
This is a thread which will be great to have in the archives to refer to when someone has questions or fears about facing same or similar procedures.

Even as an example of strength and humor in the face of any hardship, you’re giving us all a super reference here.

I am feeling anxious for when you can say the whole thing is only visible in your rear view mirror.

Just for you JP!

Well put, @Patty_Melt .

Happy 2019 to you John. May everything that you experience in this year be pleasant, and fun, and tasty, and comfortable : )

When you get your new teeth, you should ask to see if they could give you two spare vampire fangs. Wouldn’t that be awesome?

Just got back from the doctor. The ballon on the feeding tube had popped so they replaced it. I was a bit worried since they didn’t do anything for pain mitigation. I just closed my eyes and they pulled out the old one and slid in the new one, Didn’t hurt at all.

O!

@Kardamom lol!

@johnpowell glad to hear you’re on the upswing. Did you manage to sneak any spider bites in while doing radiation treatment?

Also allow me to shudder uncontrollably at the thought of pulling a feeding tube out.

Thought I would give a update.

I saw the radiologist on the 3nd. He said everything is looking good and doesn’t want to see me again until the 2nd of February. So that is great. They want me to go in for a PET scan about a month after that to see if the treatment killed all the cancer. That will be the big day. He said I should wait until June to get dentures since there is still a lot of healing to do. Mu gums are still pretty numb and they can’t do dentures until all that heals.

I saw the oncologist on the 7th. He said everything is looking good. He doesn’t want to see me for 3 months unless something is wonky with the PET scan. He also said he wants the feeding tube out in a few weeks since I disclosed that I am using it when I shouldn’t. Like in the morning I wake up and don’t feel like going upstairs to make food so I just pour in some slurry and apple juice even though I could be eating/drinking with my mouth.

Other than the the first few days of intense pain from getting the tube put in I am actually enjoying it. No dishes to clean if you use the tube!

I still don’t understand why people don’t get the tube. It has pretty much saved my life. The radiologist said about 25% of people refuse to get it put in when they really should. And some of those people die. My chemo “coach” said kidney failure is people really common with people that go through what I did and don’t get the tube. They know this and still refuse. I don’t understand it.

Things escalated quickly from the radiation. I went about 5 weeks without really having any mouth trouble. Then in a matter of days I was barely able to swallow. A few days later I couldn’t swallow at all. EVERYTHING had to go through the tube. All I could use my mouth for was swishing around water to keep it moist. That lasted for a few weeks and was horrible. Now I know why they asked if I had any guns in the house. I said we do and the radiologist said to remove them since things are going to get bad. I now understand his advice. I could see wanting to “off” yourself.

But currently feeling good. I still have some sores in my mouth but it barely hurts. I have a fuckton of leftover narcotics (really, if you are addicted to narcotics get cancer. I have hundreds of hydromorphone, oxy, hydrocodone just sitting on my desk). I hate constipation so I haven’t taken anything but Advil for the last week.

I was saying earlier about not being able to eat sweet food and ice cream being intolerable. That is getting better. I can eat vanilla ice cream now. It doesn’t really taste bad, but it doesn’t taste good either. Chocolate tastes bad but I before it was gag reflex bad, now it is just kinda bad. Hopefully in a few weeks I can start on a cheesecake diet.

The oncologist said that I might be able to get dentures in a few months which conflicts with what the radiologist said. But at least that gives me some hope.

It has been a long four months. But the bills are starting to settle. I have topped 300K in medical bills. Amazing. Not sure what my share of that is. But I am fairly certain my credit rating is going to drastically drop soon.

At least I am still alive.

Fight on! You have to stay alive to see the next election!

John should use some ice-cream to celebrate!

@johnpowell Wow. Thank you so much for taking us on this journey with you. I not only appreciate it, because I want to know how you are doing, but also because I think all of this information will help me or someone I care about some day.

$300k just sounds criminal. It’s an incredible number. If you have insurance it’s a “fake” number, but still it’s…I don’t even have the words, because I’m afraid I’ll go on a health care system tangent, which I don’t want to do here.

I’m curious, did they give you xylocaine to swish around your mouth and gargle with to kill the pain a couple hours at a time? I would think that would give you almost total relief in short spurts. Maybe it can’t be used in your situation though? I know very little about cancer treatment, especially the cancer you have. I just know a doctor gave it to me once when swallowing was like swallowing cut glass. I was spitting out my saliva it was so painful to swallow, and became severely dehydrated. It was just a very severe case of strep throat. He is the only doctor I’ve ever heard of prescribing the stuff, I only needed it a few days though.

So, had you taken the gun out of your house? Did you follow the doctor’s advice?

I was given what is called “magic mouthwash” for mouth pain. Not joking. You have have to have a prescription to get it and there is no fancy name. It is just magic mouthwash. It is just a mixture of lidocaine, Maalox, and some antifungal thing. It doesn’t really help that much and only lasts for about 30 minutes.

And they just changed the combo on the gun safe in the garage. But I have tons of pills and the liquor cabinet is fully stoked so I could have taken things in my own hands if needed. I’m actually pretty proud of myself here. I never poured booze into the feeding tube.

But seriously.. I have one piece of advice if anyone ever has to go through this. Don’t google anything. If you have any any questions or concerns email or call your doctor. Google will just terrify you and fill you with bad info. And for the love of god. Just get the feeding tube. I’m actually starting kinda depressed thinking about getting the tube out.

I went through it all before googling everything was a thing (and really, I had nooo energy!)so I was only beset by well-meaning idiots who knew nothing.

If a non-medical bill goes into collection and they bug you, tell them that you’ve been through cancer treatments and that’s why things are squirrelly. Literally every time I did that (3 times) they were very compassionate and gave me all sorts of breaks. Most people have some experience, whether it’s themselves or a loved one.

Glad you’re coming out the other side. It takes a while to get your strength back, but you’re comparatively young so you’ll get there relatively quickly.

Wow @johnpowell. You are an amazing human sir. I appreciate the updates. You are Jelly of the century for sure.

Most of all, I am glad you are okay. ((HUGS))

You are amazing.

I keep running my tongue around the inside of my mouth because I think it’s starting to hurt from reading what you wrote. John

♥ John. ♥

Hugs.

Onwards and upwards!

Good on ya!

That’s a chilling story to add to your autobiography, jp. You have a lovely way of keeping some humor in there.

I didn’t have cancer when they did biopsies last year.

I do live with chronic pain, which also is accompanied by painful, embarrassing, imprisoning extreme muscle rigidity and jerking, twisting spasms. To walk I need crutches, and I can’t go more than a few feet at a time.

I understand those moments of despair. There is strength and pride that comes from making it past those urges.

I indulge myself, and that helps a lot.
I collect toys, but not the common raggedy Ann, yo yo, Barbie, type stuff.

I have a dancing baby Groot, limited edition Lucas the talking spider plushie, little robot, stuff like that.
A bag of super balls in an empty hallway, sitting in a wheelchair, rapid fire throwing super balls, is a highly rewarding activity.

Innocent, childlike indulgences go a long way toward curing disparaging moments.

So far you have taken wise actions.
Keep on keeping on!

John, thank you for the update. Hugs.

@Patty_Melt, you tell us of these things and I just can’t envision it! Not from your online personality. Just goes to show you never know. Hugs to you too.

“But seriously.. I have one piece of advice if anyone ever has to go through this. Don’t google anything. If you have any any questions or concerns email or call your doctor. Google will just terrify you and fill you with bad info”

So true, so very, very true…

^Yes. The Internet is a double edged sword.

Sorry & angry this is happening to you. Very glad you are doing better. And reading this thread…you are amazing.

Also, I am making an appointment tomorrow for the HPV vaccine shot! And FYI to all – the FDA recently raised the age that one can get vaccinated to 45.

Good idea, @wildpotato. My cancer was cervical (before the vaccine) and it’s a nasty business.

Almost 3 months in. Just wanted to throw another voice in support and really hope recovery is going well for you man.

As things get back to “normal”, whenever that is, please remember we’re all here (individually and collectively) to help with the smaller stuff that isn’t trying to kill you too.

And I’m in for at least one Dick Punch Cancer shirt.

Good to see you @funkdaddy !

Hey John. Just wondering about you and how you are doing. I hope all is going well with you.

I have been also, need you to check in man!

Yes. It’s time for an update please.

Hopefully he’s sleeping and resting and trying to recover. I really hope he doesn’t feel pressured to use up one of his three allotted energy coupons to answer to us.
I hope you’re feeling better, @johnpowell, I hope recovery is proceeding apace.

Hope he’s at Taco Bell ! ! ! ;>)

Or at least dreaming that he is floating on a river of nacho cheese at Taco Bell :)

Still alive.

Went to the radiologist and the voice and swallowing doctor today. Radiologist said everything is looking good and doesn’t want to see me until the 18th of next month for the PET scan. That will be kinda a big thing since they will see if the cancer is gone. He said there was a chance that some could still be around and they will have to cut out the rest. But I’m not going to worry about that right now.

Time to get back to bed..

THANK YOU for checking in.
Sleep well, John.

Take care, jp!

John, thank you for letting us know how you are. Malama pono (Take good care.)

Hang in there!

Thank you for the update John! I hopr you are a little more comfortable, and that you have lots of good stuff to watch on TV.

Now, back to your nap : )

Fingers crossed.

Good to hear from you! Enjoy the nap!

Thank you for the update sir. ((HUGS))

Just saw a commercial that made me think of you John. It’s a Grubhub commercial and Taco Bell now delivers! Yay!

^^ means any of us can call in a meal for John

PM me your details John, I’ll send one your way.

I hope he can try the nacho fries. They may be soft enough to chew, and they’re awesome.

Hello, hello :)

I’m sorry you had to go through this, jp. Thanks for the updates, and I’m so glad things are looking better.

How have you been feeling John?

Like shit. I have been really tired the last few weeks. But I think that is due to my body running out of fat and not eating meat for a few months. My mouth is still all jacked up. But I have been drinking tons of the fattiest milk I can get which is helping a lot.

But in about 3 hours I have the “final” PET scan to see if the cancer is gone. If it is not gone then I am going to be in a world of hurt. They will have to do surgery if the chemo/radiation combo didn’t get rid of it. And surgery will be fucked up since they will have to remove large portions of my mouth and neck. And I am not sure if I am down with that.

It will be few days before I get the results. But I did have a CT scan for neck cyst thing last month and that came up clear. So I am not terribly worried.

@johnpowell Love and best of luck to you!

@johnpowell This is the moment it’s all been building up to. I hope you get the all clear.

Love and hugs.

Rooting for you, JP.

Digits are painfully pretzeled. Good luck, JP.

So glad you checked in here. I’ve been thinking about you, many of us have. Hoping you get some better than expected news at your next evaluation.

Thanks for the update! We’re pulling for you!
This is the important test, huh. I think there should be an approved medical condtion called: PET Scan anxiety. ;-)
Have fun drinking your ink. Bleech!

Wishing you a calm mind in those waiting (for the results) days and hours.
Keep up hope!

Our hearts are with you JP. ♥♥♥

Yeah. We’re all pulling for you JP.

Peace n love.

Scan done.. I guess the last six months all comes down to this.

She said they should have the results in a few hours. I have a appointment with the radiologist Wednesday morning so I am just planning on getting the results then. I doubt they would call with bad news if I am going to be in there in a few days. But maybe if it is good they will call.

I’m just going to try and not think about it. Time to get drunk and eat mac and cheese.

Remember to let them know if you had any bumps or bruises during the previous week. An injury can show up as increase activity which might be interpreted at mets so really think about it.
I used my shot gun a couple of days before a scan and had to have the test repeated because my results indicated a large hot spot in my shoulder – in the shape of a Remington 500 buttstock. The surgeon put his hand on the spot and asked if I had been injured there. At first I said no, and then I realized… Damn!
I had to drink the ink again about a week later.

Good luck! May your scans be as clear as the water in your fish tank! ;-)

John, thank you for checking in with us. We’re all rooting for you. – Jake

Fingers crossed John for the best possible results. ((HUGS)) buddy.

Thanks for checking in, John. All paws crossed for you!

Good thoughts headed into Wednesday, hope you get good news!!

I hoping for good things.

I will be drinking a big glass of full fat milk in your honor, John. I hope it all goes very well. We are all sending you a great big group hug. Just think of yourself as the ingredients inside of a Taco Bell burrito supreme, and we are the tortilla <3

Oh gawd the waiting!!!!!!!
I hope hope hope it came out clear.
Hang on to that strength. Tap into any resource you need to keep up your morale. It has so much effect on your healing process.
Hugs and crossed fingers.

What time Wednesday morning? The waiting is putting a knot in my stomach. I can’t imagine how you must be feeling.

All of us jellies are in that waiting room with you, JP. Sending lots of love.

Just got home. Some good news and bad news.

The good news is the cancer in the neck and throat appears to be gone.

The bad news is there is a spot on my liver that wasn’t there when they did the first PET scan. But they seem unsure of what exactly it is. They are doing a more thorough scan of the liver on Friday. I guess the good news is that it is a tiny spot and they found it really early. I have pretty much stopped drinking since the first scan so that is comforting. But I have also taken a fuckton of narcotics and Advil/Aleve in the last three months. So maybe it is just the pills that caused some damage.

But I’m not that worried. So another more thorough scan on Friday. And then the results on Tuesday. It is just one tiny isolated spot on the edge of the liver. They didn’t say it was cancer. Just that they need a better look to figure out what it is.

But overall everything went well.

YAY JOHN!!!!!!
You got through this!
My heart is in my throat. I was almost afraid to read your post.

Keep us updated. You are in our thoughts. ♥

So relieved and happy for you, JP! Whoohoo!!!

Very great news, I’m happy for you!
Now let’s hope that that little liver spot thingy is nothing (serious) and then recover fully!

Great news!!

HOORAY!

Thank goodness for the good news and as @rebbel says let’s hope that little liver spot thingy is nothing serious.

Stay strong, and keep us posted.

John, thank you so much for keeping us informed. I am so grateful to know you’re getting good medical care. Aloha, Jake

I am so happy to hear that the cancer is completely gone from your throat and mouth!!! So now we re-group, and wait until next Tuesday.

By the way, that full fat milk was good. I almost never drink it, but because of you, I did : )

gentle (but bracing) ((BEAR HUG)) John.

One step at a time. It’s all good news so far. Keep us posted.

At least you still have your mouth and tongue :) congrats!

That little spot can easily be nothing.
Fourteen months ago when they believed I had ovarian cancer, the scan they did showed red spots everywhere from my thyroid to my hoohoo.
Several biopsies later, everything came up clean.
It turned out I have a thyroid issue, but it isn’t cancer, and now I am on medication for that.

I am so happy that you got good news. I know you feel much relieved from that.
Just keep the good news coming!

Great news @johnpowell, really great news. :)

Hey John. I was just wondering how your liver scan went? Only if you are up to sharing with us, that is.

Busy few weeks.

They ended up doing a liver biopsy. Which came back positive. The neck cancer had spread.

But only five days of radiation for the liver so that is a positive. And I already did two of those already. So radiation on M-W-F next week and that is done. Luckily this radiation isn’t bad. Just sit in a machine for 20 minutes and the only real side effect is a little bit of nausea.

They just called a few hours ago about doing a research thing for gene therapy. She said there is about a 50% chance I will be a match for that. And if that doesn’t work out they will do immunotherapy. Both of those things serve pretty much the same purpose. To kill any stray cancer cells that can’t be see with scans and cut out or radiated.

And there is still a little something in my neck that they think will require surgery to remove. I see the ear, nose, throat guy on the 7th about that.

But there is good news. On Tuesday the oncologist said that after the neck surgery I have the thumbs up from him to look into getting dentures. Hello cheeseburgers!!!!

Thanks for checking in, @johnpowell. I’m sorry you have to go through more of this crap, it’s a nasty business. Good news about the dentures!

Good luck in the next course of treatment, be cared for.

Your positive attitude will get you far. Good for dentures and cheeseburgers!

Taco Bell here you come !

Sorry this seems to keep dragging out for you. But actually super glad they caught it. So maybe the dragging out part is a good thing.

Hope you’ll be enjoying cheeseburgers soon.

Always rooting for you, JP.

The immunotherapy has been very promising with some cancers. I think that’s what President Carter had, some sort of immunotherapy.

I’m glad to hear you’ll be able to have a cheeseburger! Some normalcy. Don’t overdue the first time out. Maybe half a cheeseburger, and the other half later that day.

Thank you so much for the update.

Thanks for the update jp. The long silence was getting a bit worrying.

Mixed news but glad to hear from you! Good luck with the next phase.

Hi John! So good to hear from you, and happy to hear about them green lighting your new choppers. Yummy foods are coming your way.

Also glad to know that they have a plan in place for dealing with those sneaky buggers that are still hanging out.

I hope that you are still feeling relatively OK, and that the cheeseburgers and burrito supremes will be heading down your throat real soon : )

Hey! I thought I was the only Jonesn4burgers here.
I am so, so glad to hear about some improvements coming.
Listen, let me offer some advice about those dentures, from personal experience.
Your gums have healed by now, but they are not used to the grinding and pressure that eating with dentures will do. Stay away for a while from hard foods, such as raw carrots, or chewy stuff. It might feel good to bite down at first, but your gums can bruise, and you won’t notice the pain until the next thing you try to eat.

Hang in there. We are all waiting for you to come back.

Jeez, neck cancer liver cancer and now no raw carrots. Hang in there jp.

I’m sorry it continues John, but I’m real glad to hear from you.

Whew! It is great to hear from you. It looks like you’re working with a good team. That’s the way to get things done.
Gene therapy sounds exciting. Good luck with getting into the clinical trial.
Thanks for the update. I was being a worried guy.

As the journey continues, we go with you. We’re rooting for you @johnpowell !!!

Thanks so much for checking in, we were getting worried. You have a lot of friends here. Hope the rest of the radiation goes okay.

Yes. Thanks for the update. I was wondering how things were going.

John, thank you for the update. All the best to you.

@johnpowell Had any cheeseburgers yet? : )

Hi John, very glad to hear things are going well. Hope the rest of that radiation wasn’t too bad & you are rocking some new dentures!

John?

^Yeah. It’s been a while, since an update….

He seems to be doing okay.

John, do you feel the love? This thread is racing the hijack thread for longest.

We are wringing our hands for an update.

Well. As Brian pointed out, he has at least been around…

Still alive.

Had a CT scan on Tuesday of my neck/mouth and still no cancer. I think it is in September they want to scan the liver and see how that is going. But I feel pretty confident the liver is under control. But I still want to talk to the radiologist and see about getting a PET scan sooner since that is a more comprehensive full body scan.

So right now it is just immunotherapy every three weeks and I have already had two treatments. No really side effects from the immunotherapy except being pretty tired for a few days after and a few tiny rashes. I had a treatment yesterday and have pretty much been asleep for the last 30 hours.

I get immunotherapy in the infusion room where they do chemo and I was sitting there yesterday waiting for some bloodwork to come back and the nutritionist walks up. I hadn’t seen her since my last chemo in December and she seemed shocked to see me there. So I had to explain about the cancer spreading and why I am back. Then I got a good 30 minute talking to about my weight. She wasn’t pleased that I am drinking a lot of water since it is “empty calories”.

But overall feeling pretty good. I’m still really weak since I am down to about 105 pounds. But my mouth has healed a lot and I am back to being able to eat sort of normally.

There are a few problems with eating.

1: No teeth.. This is being rectified and should have been done already. I called at the beginning of last month to get the dentures approved by insurance and they said I was already approved but the approval was only good for a few months and it had lapsed and they would need to redo it and to call back in three weeks. So I call back on the 31st and they said it was good to go but moot since my insurance was ending that day. So I call my insurance company and I still have insurance but the company that handles dental had changed and I need to start all over with a new provider. So I am still waiting to get in and see a dentist so they can start the approval process all over again. I’m not terribly upset about this since there is still a chance the dentist will say my mouth hasn’t healed enough yet. There is still a lot of numbness in my gums. So every day that passes just increases the chance that I will get the okay from the dentist.

2: Radiation kills saliva glands. I have a permanent state of dry mouth. It will never be normal again but it is slowly getting better. Combined with not being able to chew anything it makes it hard to get stuff down. Mashed potatoes are pretty undo-able. They just get stuck in there.

3: For a while even trying to eat anything could lead to mouth pain for hours. So that one bite of soup would cause immense pain that would last for a long time. So I just stopped eating and only took in food from the tube. Once you associate something with severe pain you really don’t want to do that thing again. Maybe spanking your kids really does work.

4: Use it or lose it. Radiation does a real number on the muscles in your neck/mouth. Your tongue is a muscle and can go weak. I wondered why before I even started radiation they had me go to a “swallowing coach”. Apparently it is a real thing and they cost $400 per hour (I have the bills to prove it). But eventually your throat will tense up and swallowing becomes impossible. I was very close to this.

I had to decide between my throat seizing up or dealing with the pain of getting food down it. I discovered how they get your throat working again (it involves a ballon) so I went with just forcing myself to get mac and cheese down. I had to work my way up. At first noodles that have been cooked until they are mush so I could swallow them. Then gradually cooking the noodles less and less. Now I only cook them for about three minutes so they are still really firm. But my throat seems to be in better shape now.

But my mouth is a lot better now. I made manicotti last night and am able to get it down. And in just the last week I have been starting to get some fish in me. Cod and ketchup..

But overall I am a lot better than I was a few months ago and each day is better than the one before it.

Some stats. Over the last year. 167 charges to insurance totaling around 660K.

But right now I have three whole weeks without a doctors visit.

^JFC. What a nightmare. I’m proud of you JP. Keep it up. Maybe you can try some Ensure, or something like that, to drink. It’s probably not that different from what they put in the tube…

I’m VERY happy that you seem upbeat, and that will help you beat this shit.

Thanks for the updates.

Peace n love.

You need pounds, I have a bunch up for grabs. I wonder if they can transfuse it like they do blood.

I didn’t know that about saliva. What a wicked disability!

I know you will come through like a champion. I’m sorry you are doing combat against so many things at once.

Sending lots of love!

Baby steps, but you seem to be taking them. Sending all the green light and whatever.
Keeping all the digits crossed for your recovery!

Thanks for the update JP. What began with a sore throat ends with a sore throat. Looks like you won’t make the million.

Thank you for the update. So many things I had no idea about with cancer, chemo, radiation. I’m sending you positive thoughts.

John, you are a marvel. You are an inspiration. I was so glad that you posted this. What a nightmare you’ve been living, and you are able to talk about it as though it wasn’t all that much of an ordeal, more like getting gum stuck on your shoe, or stepping in dog poop, or getting a parking ticket.

You have a strength and sense of humor that makes my heart swell. Keep up the great work my friend : )

Great to hear from you!

I ran the numbers and after making some assumptions using 2016 figures for US health care spending and GDP….

I figure I paid 0.3 cents to keep you breathing! And I’m honored to do it!
Hey! Let’s make it a full penny!

Definitely at trooper John, good to hear things are slowly getting better!

I’m in @LuckyGuy! Hell, I see your penny and up you a buck!

Malama pono, John.

OMFG.. I just checked and the first immunotherapy bill hit insurance. $28,982.36

That is for getting a needle in my arm for under a hour. And there is not a end date for that. That just keeps going every three weeks. $500K per year, forever.

So yeah folks. . That pre-existing conditions thing in Obamacare is kinda important.

John, I got nothing. There are no words for this situation.

Jesus. Yeah. The preexisting thing is just a little important @johnpowell.
How much will insurance cover?
Also, if we need to, we’ll start a Gofund me.

It says my share is $1,364.00. I will worry about that once they start turning me away.

Now I wish I hadn’t worked so hard over the last five years getting my credit in good shape again. Maybe I should buy a house before this shit hits the Equifax.