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johnpowell's avatar

So I have cancer!

Asked by johnpowell (17428points) October 28th, 2018

About four months ago I woke up with a minor sore throat. It wan’t a big deal and went away after I got some water in me. Got worse over a month and I went to urgent care. They thought it was thrush and kept giving me pills for two months.

Sept 14…

https://stfudamnit.com/ryan/C/1.JPG

Tube of truth. About a hour later I was eating some Dairy Queen and got a call that it looked like cancer. That was a Friday at 2PM. So I got to wait until Monday to see a ENT doctor for a closer look and biopsy.

Yup, cancer.

Here is the fucked up thing. It isn’t from smoking or drinking. Two ENT doctors, two oncologists, and one radiation dude all say it is from HPV. Yeah. The thing they want to vacinate for but it will made all the young ladies sluts..

So. A month ago I was living alone in my little depressing studio apartment when I found this out.

It took a while to tell my mom what was going on. Even though she was driving me to appts. Then I tasked her with telling my sister. My sister never called. She knows me well. She let me do things on my own scheduale.

So I figured I would be better off living with my sister in Porland and getting treated up here. So I just called my sister and told her I was moving in. She has a furnished basement with a bathroom and kitchen down here.

Things ended up going very fast.

ENT person on the 24th of Sept in Portland. Oct 3rd, dentist and radiologist. All my teeth removed on the 12th*. So many appiotments. Swallowing coach, oncologist, nutritionist, more dentist, mask*, scans, and so on.

My sister has been driving me. It has been about 30 hours a week for the last month of driving me and sitting in waiting rooms for her.

But Monday is the culmination of all this preperation…

Radiation, a hour later a feeding tube, two hours later chemo starts. Monday is going to be the worst day of my life.

But if things go well I will be cancer free in 7 weeks. I guess this is technacally Oropharyngeal Cancer. It isn’t like it is a vital organ. It is going to be horrible but I haven’t been given a chance of survival yet. They said they could always cut it out but it would make it difficult to speak and swallow for the rest of my life.

* (since the cancer is in the mouth the radiation would blast the shit out of my teeth killing them anyway. And if the teeth were still in there it increases the risk it could kill my jaw bone and then that would have to be removed.)

* The creepy mask made to hold my head in place when the radiation is done. https://stfudamnit.com/ryan/C/2.png

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527 Answers

ARE_you_kidding_me's avatar

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!

Stache's avatar

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

rebbel's avatar

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.

canidmajor's avatar

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.

chyna's avatar

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.

KNOWITALL's avatar

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.

Dutchess_III's avatar

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.

janbb's avatar

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.

LuckyGuy's avatar

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?

SQUEEKY2's avatar

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

Caravanfan's avatar

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

Zaku's avatar

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

mazingerz88's avatar

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

flutherother's avatar

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.

augustlan's avatar

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

JLeslie's avatar

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.

Love_my_doggie's avatar

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

Adagio's avatar

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

johnpowell's avatar

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.

MrGrimm888's avatar

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.

johnpowell's avatar

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.

2davidc8's avatar

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!!

raum's avatar

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.

chyna's avatar

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.

LuckyGuy's avatar

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

canidmajor's avatar

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.

johnpowell's avatar

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.

rebbel's avatar

Get well, John.

janbb's avatar

Best of luck!

kritiper's avatar

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!

imrainmaker's avatar

Sorry to hear that. Get well soon buddy!!

Tropical_Willie's avatar

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

Kardamom's avatar

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

raum's avatar

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

janbb's avatar

Yeah, give it a dickpunch!

raum's avatar

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

KNOWITALL's avatar

@janbb and @raum Crazy kids, funny though!

flutherother's avatar

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

chyna's avatar

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

KNOWITALL's avatar

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

Mariah's avatar

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?

raum's avatar

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.

Dutchess_III's avatar

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

Jeruba's avatar

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.

Jeruba's avatar

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

ANef_is_Enuf's avatar

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

Mimishu1995's avatar

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

janbb's avatar

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

notsoblond's avatar

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.

tinyfaery's avatar

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.

johnpowell's avatar

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.

chyna's avatar

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

KNOWITALL's avatar

@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.

Mimishu1995's avatar

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

Dutchess_III's avatar

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

Tropical_Willie's avatar

I’ll never ever ever tell. ;>0

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

Mariah's avatar

@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.

chyna's avatar

^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.

Kardamom's avatar

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 : )

Soubresaut's avatar

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.

JLeslie's avatar

@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.

canidmajor's avatar

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

Mariah's avatar

@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.

Call_Me_Jay's avatar

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.

JLeslie's avatar

@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.

canidmajor's avatar

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

mazingerz88's avatar

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

johnpowell's avatar

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.

MrGrimm888's avatar

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

ZEPHYRA's avatar

Wishing you the best. Strength and courage to you.

flutherother's avatar

Are you going to vote?

johnpowell's avatar

Already done. We vote by mail here.

cookieman's avatar

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.

filmfann's avatar

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.

johnpowell's avatar

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.

Dutchess_III's avatar

Shhhh!!

How you feeling? Is the soft serve free?

johnpowell's avatar

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.

chyna's avatar

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.

canidmajor's avatar

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.”

janbb's avatar

Keep your pecker up, JP!

Dutchess_III's avatar

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

Mariah's avatar

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

I recommend the chocolate flavor.

canidmajor's avatar

Soylent Green is people.

johnpowell's avatar

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

cookieman's avatar

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

Patty_Melt's avatar

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.

MrGrimm888's avatar

^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!

chyna's avatar

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

cookieman's avatar

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

DICK PUNCH CANCER in the DICK

LuckyGuy's avatar

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!

janbb's avatar

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

tinyfaery's avatar

^^Bahahahahaha…

johnpowell's avatar

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.

janbb's avatar

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

ARE_you_kidding_me's avatar

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

cookieman's avatar

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)

longgone's avatar

Good luck, JP, and stay strong.

raum's avatar

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

Quietly rooting for you, man.

johnpowell's avatar

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

Patty_Melt's avatar

Two thumbs up

Mimishu1995's avatar

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

johnpowell's avatar

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

Dutchess_III's avatar

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

cookieman's avatar

Made this for you @johnpowell

DP

chyna's avatar

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

cookieman's avatar

awww, thanks @chyna

ARE_you_kidding_me's avatar

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

Mimishu1995's avatar

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

Patty_Melt's avatar

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

cookieman's avatar

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

@Patty_Melt: and biscuits!

Patty_Melt's avatar

Lordy, yes biscuits!

Kardamom's avatar

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 : )

Dutchess_III's avatar

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.

mazingerz88's avatar

Can’t find my slippers.

Oh hey @johnpowell… : )

janbb's avatar

How did we get to biscuit recipes?

Sending caring JP!

MrGrimm888's avatar

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.

johnpowell's avatar

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.

chyna's avatar

^Good to hear!

Dutchess_III's avatar

@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!

Patty_Melt's avatar

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

Dutchess_III's avatar

I just thought he might like the recipe.

canidmajor's avatar

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.

flutherother's avatar

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

Dutchess_III's avatar

How are you today @johnpowell?

johnpowell's avatar

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.

JLeslie's avatar

@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.

Patty_Melt's avatar

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.

rebbel's avatar

Sending a hug, @johnpowell <3

cookieman's avatar

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

chyna's avatar

@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!

canidmajor's avatar

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.

Dutchess_III's avatar

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

Mariah's avatar

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.

Kardamom's avatar

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.

tedibear's avatar

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

johnpowell's avatar

@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.

Mariah's avatar

Fuck yeah!!!!

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

Kardamom's avatar

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

cookieman's avatar

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

rebbel's avatar

I’m happy for you, very good news!

LuckyGuy's avatar

This one time when shrinkage is great news!

JLeslie's avatar

Great news!

janbb's avatar

All righty!

Dutchess_III's avatar

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

tinyfaery's avatar

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

raum's avatar

Whoohoooo!
Fuck you, cancer.

longgone's avatar

Oh man, I am so relieved to hear that.

MrGrimm888's avatar

Great news! Keep fighting!

Patty_Melt's avatar

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

tedibear's avatar

WOOOoooOOoooOOOOT!

ARE_you_kidding_me's avatar

Suck it cancer!!

Soubresaut's avatar

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

Mimishu1995's avatar

We can finally eat KFC together!

ZEPHYRA's avatar

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

flutherother's avatar

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!

johnpowell's avatar

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.

Mimishu1995's avatar

How are you feeling now? Any better?

johnpowell's avatar

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.

chyna's avatar

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

Patty_Melt's avatar

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.

JLeslie's avatar

@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.

rebbel's avatar

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

ARE_you_kidding_me's avatar

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

Dutchess_III's avatar

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

Cupcake's avatar

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.

Patty_Melt's avatar

Wow. So well stated!

Dutchess_III's avatar

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!

janbb's avatar

Hi @Cupcake! Great to see you!

cookieman's avatar

Cupcake!!!!!!!!

Mimishu1995's avatar

How are you today John?

canidmajor's avatar

@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.

johnpowell's avatar

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.

janbb's avatar

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

Call_Me_Jay's avatar

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.

cookieman's avatar

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

Dutchess_III's avatar

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

Patty_Melt's avatar

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.

LuckyGuy's avatar

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.)

mazingerz88's avatar

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.

flutherother's avatar

And steer clear of the kryptonite.

Kardamom's avatar

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.

KNOWITALL's avatar

Happy Thanksgiving, John.

johnpowell's avatar

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.

Mimishu1995's avatar

Mmm… cheeseburger :)

Tropical_Willie's avatar

Taco Bell for you guy .

Mariah's avatar

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.

cookieman's avatar

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

johnpowell's avatar

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.

Mariah's avatar

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.

janbb's avatar

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

cookieman's avatar

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.

Tropical_Willie's avatar

Keep eating Taco Bell !

augustlan's avatar

Thinking of you today, JP. <3

chyna's avatar

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

johnpowell's avatar

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.

LuckyGuy's avatar

Thanks fr the update. We worry.

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

canidmajor's avatar

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

chyna's avatar

Nine! Almost there!

tinyfaery's avatar

Hang in there.

Kardamom's avatar

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 : )

JLeslie's avatar

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

cookieman's avatar

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))

Dutchess_III's avatar

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.

Dutchess_III's avatar

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!

Mimishu1995's avatar

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

MrGrimm888's avatar

Stay strong JP. We’re with you.

Dutchess_III's avatar

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. (((( ))))

chyna's avatar

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

augustlan's avatar

Thinking of you, JP. <3

XOIIO's avatar

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

RedDeerGuy1's avatar

Yes fuck cancer.

canidmajor's avatar

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

canidmajor's avatar

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.

cookieman's avatar

certainly hope he is okay

Patty_Melt's avatar

I am confident he is.

Kardamom's avatar

We are here whenever John Powell is ready.

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

johnpowell's avatar

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.

janbb's avatar

Good to hear JP!! Rest up.

Dutchess_III's avatar

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

rebbel's avatar

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

canidmajor's avatar

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

Kardamom's avatar

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

cookieman's avatar

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

Mimishu1995's avatar

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

flutherother's avatar

Great news! Taco Bells is on standby.

LuckyGuy's avatar

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.

JLeslie's avatar

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

tinyfaery's avatar

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

Hawaii_Jake's avatar

@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.

Dutchess_III's avatar

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

johnpowell's avatar

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.

Mimishu1995's avatar

How are you feeling now?

ARE_you_kidding_me's avatar

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

LuckyGuy's avatar

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! :-)

Patty_Melt's avatar

Ulysses Benjamin Phunee ^
<U. B. Phunee>

janbb's avatar

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

augustlan's avatar

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

tedibear's avatar

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!

mazingerz88's avatar

Very NICE! John… : )

flutherother's avatar

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

chyna's avatar

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

longgone's avatar

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

johnpowell's avatar

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.

Dutchess_III's avatar

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

How you feeling, man?

rebbel's avatar

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)!

LuckyGuy's avatar

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

chyna's avatar

Drink milkshakes!

tinyfaery's avatar

Yay. Blend up that Taco Bell and drink it.

JLeslie's avatar

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

Patty_Melt's avatar

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.

cookieman's avatar

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

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

Mimishu1995's avatar

More Taco Bells for John!

johnpowell's avatar

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.

janbb's avatar

Good nrws indeed!

MrGrimm888's avatar

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!

Kardamom's avatar

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 : )

flutherother's avatar

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

Dutchess_III's avatar

Happy New Year John!!!

mazingerz88's avatar

Happy New Year @johnpowell! : )

Dutchess_III's avatar

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.

augustlan's avatar

Happy news for a happy new year! <3

janbb's avatar

Happy New Year, JP! Gain strength and peace.

cookieman's avatar

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

johnpowell's avatar

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.

JLeslie's avatar

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

johnpowell's avatar

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.

JLeslie's avatar

@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?

rebbel's avatar

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

johnpowell's avatar

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.

MrGrimm888's avatar

^Hang in there JP.

tinyfaery's avatar

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

Mimishu1995's avatar

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

Dutchess_III's avatar

Glad to hear from you @johnpowell!

Patty_Melt's avatar

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.

Kardamom's avatar

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?

johnpowell's avatar

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.

XOIIO's avatar

@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.

johnpowell's avatar

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.

Mimishu1995's avatar

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

John should use some ice-cream to celebrate!

JLeslie's avatar

@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?

johnpowell's avatar

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.

canidmajor's avatar

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.

cookieman's avatar

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))

chyna's avatar

You are amazing.

Dutchess_III's avatar

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. ♥

flutherother's avatar

Onwards and upwards!

janbb's avatar

Good on ya!

longgone's avatar

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

Patty_Melt's avatar

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!

Hawaii_Jake's avatar

John, thank you for the update. Hugs.

Dutchess_III's avatar

@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.

ARE_you_kidding_me's avatar

“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…

MrGrimm888's avatar

^Yes. The Internet is a double edged sword.

wildpotato's avatar

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

wildpotato's avatar

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.

canidmajor's avatar

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

funkdaddy's avatar

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.

janbb's avatar

Good to see you @funkdaddy !

chyna's avatar

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

ARE_you_kidding_me's avatar

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

MrGrimm888's avatar

Yes. It’s time for an update please.

canidmajor's avatar

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.

Tropical_Willie's avatar

Hope he’s at Taco Bell ! ! ! ;>)

Kardamom's avatar

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

johnpowell's avatar

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..

Dutchess_III's avatar

THANK YOU for checking in.
Sleep well, John.

janbb's avatar

Take care, jp!

Hawaii_Jake's avatar

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

tinyfaery's avatar

Hang in there!

Kardamom's avatar

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 : )

flutherother's avatar

Fingers crossed.

tedibear's avatar

Good to hear from you! Enjoy the nap!

cookieman's avatar

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

chyna's avatar

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

ARE_you_kidding_me's avatar

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

ARE_you_kidding_me's avatar

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

MrGrimm888's avatar

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

mazingerz88's avatar

Hello, hello :)

dxs's avatar

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

cookieman's avatar

How have you been feeling John?

johnpowell's avatar

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.

janbb's avatar

@johnpowell Love and best of luck to you!

flutherother's avatar

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

chyna's avatar

Love and hugs.

raum's avatar

Rooting for you, JP.

canidmajor's avatar

Digits are painfully pretzeled. Good luck, JP.

JLeslie's avatar

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.

LuckyGuy's avatar

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!

rebbel's avatar

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

Dutchess_III's avatar

Our hearts are with you JP. ♥♥♥

MrGrimm888's avatar

Yeah. We’re all pulling for you JP.

Peace n love.

johnpowell's avatar

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.

LuckyGuy's avatar

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! ;-)

Hawaii_Jake's avatar

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

cookieman's avatar

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

tedibear's avatar

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

ARE_you_kidding_me's avatar

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

tinyfaery's avatar

I hoping for good things.

Kardamom's avatar

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

Patty_Melt's avatar

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.

raum's avatar

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.

johnpowell's avatar

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.

chyna's avatar

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

Dutchess_III's avatar

Keep us updated. You are in our thoughts. ♥

raum's avatar

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

rebbel's avatar

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!

janbb's avatar

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

MrGrimm888's avatar

Stay strong, and keep us posted.

Hawaii_Jake's avatar

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

Kardamom's avatar

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 : )

cookieman's avatar

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

flutherother's avatar

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

Mimishu1995's avatar

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

Patty_Melt's avatar

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!

mazingerz88's avatar

Great news @johnpowell, really great news. :)

chyna's avatar

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

johnpowell's avatar

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!!!!

canidmajor's avatar

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.

chyna's avatar

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

Tropical_Willie's avatar

Taco Bell here you come !

raum's avatar

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.

JLeslie's avatar

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.

Dutchess_III's avatar

Thank you so much for the update.

flutherother's avatar

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

janbb's avatar

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

Kardamom's avatar

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 : )

Patty_Melt's avatar

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.

flutherother's avatar

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

cookieman's avatar

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

LuckyGuy's avatar

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.

tedibear's avatar

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

longgone's avatar

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.

MrGrimm888's avatar

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

Hawaii_Jake's avatar

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

mazingerz88's avatar

@johnpowell Had any cheeseburgers yet? : )

wildpotato's avatar

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!

MrGrimm888's avatar

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

Patty_Melt's avatar

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

We are wringing our hands for an update.

MrGrimm888's avatar

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

johnpowell's avatar

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.

MrGrimm888's avatar

^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.

Patty_Melt's avatar

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.

janbb's avatar

Sending lots of love!

canidmajor's avatar

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

flutherother's avatar

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

chyna's avatar

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

Kardamom's avatar

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 : )

LuckyGuy's avatar

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!

ARE_you_kidding_me's avatar

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

Dutchess_III's avatar

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

Hawaii_Jake's avatar

Malama pono, John.

johnpowell's avatar

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.

Hawaii_Jake's avatar

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

Dutchess_III's avatar

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.

johnpowell's avatar

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.

Patty_Melt's avatar

It’s a way to go.
Eventually it would be collateral.

Dutchess_III's avatar

Hey…just pay $25 a month on the bill, or whatever, and your credit will be fine. I have had do to that more than once. They credit companies just want to see regular, steady payments. They don’t care how much they are.

MrGrimm888's avatar

You might could get away with paying even less. I would try.

Unbelievable, that anyone would be expected to pay that. Why not just say it costs $1,000,000,000 per treatment?... The government should be all over the pharmaceutical companies, for that. Pathetic…

JLeslie's avatar

$1,364 is less than 10%, which means to me it doesn’t really cost the $28,982, because usually insurance is at least a 10% copay. The billing is such a scam. Does it say how much your insurance paid? Something like the price is $28,982, but because of your wonderful insurance it was lowered to $7,500 and your part is $1,364?

It would be interesting to ask what the self pay price is.

Not that I expect you to go to any trouble dissecting this, you have enough to deal with. One of these days I’m going to do a podcast about healthcare billing and fraud. It’s so upsetting.

I really think you are an amazing man @johnpowell. The time you have taken to share your experience has really touched a lot of people, and I believe it is helping a lot of people also.

MrGrimm888's avatar

So basically, another type of cancer, is the American health care system.

cookieman's avatar

I’m just glad to hear you’re doing a bit better. ((HUGS))

rebbel's avatar

In case I ever have to deal with a potential deadly disease I hope I could be as strong and positive as I feel you are.
Admiration is too weak a word to describe what I feel for your fighting spirit.

Kudos, and beat that motherfucker!

johnpowell's avatar

Just made a new order for feeding tube supplies. Hopefully my last order.

NEW TEETH ON THE 11th!!

chyna's avatar

Fantastic! You’ve got this!

ARE_you_kidding_me's avatar

Taco Bell on the horizon

Kardamom's avatar

New choppers and a burrito supreme are coming your way : )

johnpowell's avatar

Taco Bell might be going a bit hard as a introduction back into solid food. I will probably start with something easy like a chicken strip basket from DQ.

cookieman's avatar

Yaay. Some pearly whites.

Mimishu1995's avatar

Let’s raise some glasses!

Dutchess_III's avatar

That’s some good news @johnpowell!

tedibear's avatar

Excellent!

wildpotato's avatar

John, you’re an amazing person.

@everyone – I second the Gofundme idea for out-of-pocket costs; would be honored to chip in some. Would this be ok with you, @johnpowell?

johnpowell's avatar

Welp.. This morning one of my greatest fears came true. I accidentally pulled out the feeding tube. For those that don’t know the contraption looks like this.

A tube that is about 10 inches long hangs out of my stomach. There is a ballon at the end (in your stomach) that you fill with water. Here it is. The yellow part is where you use a syringe to inflate the ballon.

The bags I put the slurry in has about a 8 foot tube that connects to the bag to the tube coming out of my stomach.

So this morning I had just finished a feeding and went into the bathroom to unplug everything. I stepped on the loop of tube that hangs down and next thing I know the tube that normally hangs out of my stomach is on the bathroom floor. I panic and grab some gauze to cover the hole. Then I run upstairs to see if anyone is home that can drive me to the hospital. Nobody is home.

The thing is the hole closes up pretty fast. You have about a hour to get the tube back in there. We live about 30 minutes from the hospital so even if someone was here and was able to drive it might be cutting it close.

Still in a bit of shock I think about just leaving the tube out since most of what I eat now is orally. But dentures are still a few months away so I decide to just try and put the tube back in myself. MY WORST FEAR…

So I just try shoving it in. Doesn’t work. Then I notice the ballon is partially inflated so I grab a syringe and pull the water in it out. I had never done that before. I was told to never mess with the ballon. But can’t really mess it up more. So I got about 2ml of water out of the ballon.

Then I try shoving the thing back in. It took a bit more force than I was comfortable with but it went in. But I was worried since I wasn’t sure it actually went in my stomach. I thought that maybe it had slipped between my skin and my stomach. Like horizontal drilling when drilling for oil. But then I struck soy gold. I had never put the plug back in the tube. So I feel a lot of warm all over my feet and on my pants. My breakfast is pouring all over floor. At least I got the tube back in my stomach. I put the plug back in and stop the leaking. Then I try filling the ballon which seemed to have worked.

Somehow in the middle of all this I managed to text my sisters kid. While waiting for them to get home I call Interventional Radiology since they are the one that put the tube in. They want me to come in to get the tube replaced. And I was a bit concerned since I didn’t really think about hygiene. The tube fell on my bathroom floor and I just shoved it in my stomach. Wasn’t sure if I would need antibiotics or anything.

It took them about five minutes to put in a new tube. The guy said I was first person he had ever seen that put the tube back in themself. And yeah, when he put the tube back in he used a ton of lube. Lube makes it slide right in. And he said not to worry about germs.

He also said that the tube needed to be replaced anyway. The ballon had just naturally deflated. When it came out it looked more like a kidney bean than a beach ball.

Yeah, not exactly how I planned on spending my day.

But other than that doing pretty good.

Dutchess_III's avatar

Wow. Way to stay calm! Awesome.

chyna's avatar

You were great in an emergency! Glad you had it together.

cookieman's avatar

Holy cow! It’s like an episode of M*A*S*H and you were Hawkeye out in the field.

Very brave sir. Very brave.

LuckyGuy's avatar

Oh man! I can’t tell you how many times I winced as I was reading. When I got to the part where you were trying to push it in I was silently screaming: “Lube it, JP! Lube it!!!” It sounds like you handled it well, though.

“Soy gold” :-) It’s clear you haven’t lost your sense of humor!

rebbel's avatar

I think I would’ve passed out…..
Good on you to stay calm enough to act.

JLeslie's avatar

You’re amazing. I think I would have called an ambulance, but who knows, in the situation I might have just cried. I would probably be paranoid about an infection, but now I know your doctor wasn’t concerned. I think everything you have shared on this Q will help a lot of people.

Tropical_Willie's avatar

Way to stay focused !

raum's avatar

Jesus. I felt panicked just reading that. Way to stay calm, JP. Glad you got to Radiology and they said it was okay.

MrGrimm888's avatar

One thing I have learned from this, is JP, is a bad mother fucker. You can do this.

Patty_Melt's avatar

How is your health otherwise? I mean, your strength, stamina, side effects.
Do you have restrictions you find difficult?
You have been through quite a lot. Your strength of resolve is awesome, to do that and not knowing what the outcome might be. Stunning.

flutherother's avatar

Glad to hear you’re doing good, but I think I’ll maybe skip breakfast as well this morning.

JLeslie's avatar

How are you doing now? Did everything stay ok with the feeding tube now that it’s been a couple of days since the “event”?

johnpowell's avatar

Yeah. The tube is doing well. I played basketball for about a hour this morning and it held up. I do have this mesh thing the radiologist gave me that I wear that holds the tube in place for whenever I do any exercise.

Oh, and I quit smoking on the 3rd of last month. So that has been interesting.

JLeslie's avatar

Wow! Over a month smoke free. That’s never easy. Have you stopped craving it? Did you quit cold turkey? Or you’re still giving yourself nicotine somehow?

MrGrimm888's avatar

Get it JP. Beat this shit. My money, is on you….

cookieman's avatar

Even more impressive!! I’m glad to hear you quit smoking.

Patty_Melt's avatar

You are like a Viking!

johnpowell's avatar

@JLeslie :: It is a two pronged approach. In the past I have tried those e-cig things. Didn’t work for me. And I have tried the patch. Also didn’t work. Keep in mind I have been smoking a pack a day since I was seventeen. I was out on my porch in the rain when the radiation was at its worst and I couldn’t even swallow water trying to smoke even though I couldn’t inhale.

So I decided to try both at the same time. Success. I bought a mid-range vape thing. It is between a Juul and one of those crazy ones that shoots out a forest fires worth of smoke. And I also use the patch.

The vape takes care of the hand stuff and the fun of blowing out smoke. And the patch covers the nicotine.

One thing about the vape vs smoking is when I went through the trouble to go upstairs and put on slippers and light up a smoke is I had invested so much effort into smoking I would smoke the whole fucking thing. And I am also a cheap bastard. I would smoke more than I really wanted just because each puff is a nickle and nobody every got rich putting nickles in the ashtray. If there were five drags left on the smoke I would finish it even though I felt “full”. With the vape I can just take a couple puffs here and there. No need to smoke more than needed since nothing is being wasted.

And the patch. I bought a new box about a week ago (box lasts 14 days). About two days into the box I noticed that I had the same patch on for a few days. I had been pretty religious about putting on a new patch every 24 hours. I am now cutting them in half and riding them until they fall off. This box is probably my last. I might start cutting them in quarters. But less patch hasn’t meant more vaping. I was worried about that so I am paying attention.

But really, between the two quitting has been tolerable. And my fingernails aren’t nasty anymore. If you are looking to quit I would suggest it. I have even hit the point where I am waiting for the bus and someone will pull out a smoke and light up and I roll my eyes and think, “learn some self-control, garbage-human”.

I don’t need to be perfect, just better.

JLeslie's avatar

@johnpowell That’s great that you found a system for you. I don’t smoke, but your story makes me think of when I overeat, because the food in my fridge might be on its last day, or because it’s just there in front of me. The food is my poison, no different than cigarettes in my mind. Where I live it is almost completely smoke free. When we see or smell a cigarette it stands out it’s so unusual. Even in our outdoor areas in our town squares where the shopping and restaurants are people aren’t even allowed to smoke the ecigs or vaping. I think people basically confine it to their back yards. I don’t know anyone who smokes here.

My aunt loved to smoke. She used to say she was tired of feeling like a criminal everywhere she goes now. I remember her freaking out about them changing the laws not allowing smoking on planes back in the day. She told me completely seriously that she might not be able to go to Europe again because of it.

Funny story. A friend of friend was trying to quit and had the patch. My friend and the one quitting are driving in the car, and they both light up. While smoking, on the radio the person talking says how dangerous it is to smoke and have the patch on at the same time. They looked at each other, and she peeled the patch right off. Lol. I don’t know if she ever actually quit.

I don’t want to derail too much. This Q is so good. I’m always so glad to see you check in and update us. This Q goes down in fluther history as one of the best Q’s ever in my mind.

Kardamom's avatar

Wow!!! You performed your own miracle, and had a magnificent story to tell about it!

I smell a book and movie deal!

Just so glad to hear that you are OK <3

tinyfaery's avatar

Holy shite. I think my mouth was gaping the whole time I read that. You are such a strong person, JP.

Dutchess_III's avatar

@JP, you are over the hump now. If you ever feel like lighting up again…don’t. Just walk away. I am a thousand times proud of you in so many ways.

johnpowell's avatar

Oh yeah, I think I am officially a ex-smoker. Absolutely no desire to start again. I actually had a pack with three in it on my desk until last Monday. I found it easier to quit with them just staring at me all day. There is a mental thing that makes it easier if you choose not have something over not being able to have something.

But my sisters kids had a house party on Monday and Claire asked if I had a smoke and at first I said “no” and told her about how I quit, because I wanted to brag and make her feel bad for smoking. Then I gave her the three on my desk.

And I am pretty much off the patch. I’m still on the box I bought at the beginning of the month and still have four left. I don’t plan on buying another box. I would rather spend the forty bucks on lumber.

Patty_Melt's avatar

You are amazing!!!!!!

I wish I had willpower like that.
Cigarettes have been with me 40 years. No person has stuck with me nearly so long. I can’t see me walking away.

I am genuinely impressed.

johnpowell's avatar

I was partially motivated by reading about Dog the Bounty Hunters wife dying. I have never seen the show but I know of it. And it is safe to say that I am not impressed by what I do know of them. But:

“The 51-year-old announced in 2017 that she’d been diagnosed with stage II throat cancer, but was cancer free by December of that year. The cancer returned last November—after which she underwent aggressive chemo and fought valiantly to maintain normalcy in her life”

There was that in a perfect storm of other stuff like trying to eat more, started exercising, and treating myself to this beauty.

johnpowell's avatar

And I totally get it. I’m not trying to convince anyone to quit.

But to any readers, if you are thinking of starting, or just did, please stop while it is easy.

It didn’t really click until I first saw the radiologist and he scheduled a PET scan. He said something like, “We can figure out a treatment plan once we get the results. If it just in the mouth and neck some radiation and chemo should work. If it has spread we are looking at making you comfortable.”

So after that I gave death some thoughts. And more thoughts when five months later it came back that it had spread to my liver. Thank god for not having kids, that would have changed my outlook for the worse.

But my point is.. I have hopefully thought about death and been closer to it than most here. And you can pry the chicken nuggets and ranch from my cold dead hands. Somethings are worth losing a few years over.

Mimishu1995's avatar

@johnpowell So you are saying that the cancer has spread to your liver?

Oh God…

johnpowell's avatar

It had. I already had radiation on the liver. That happened back in May-ish. It was caught really early and was just a small spot. Just five radiation treatments, not even enough to burn the skin.

MrGrimm888's avatar

Thank God.

Mimishu1995's avatar

@John yeah, thank God. I would consider it a warning shot for everyone.

Glad you are ok though :)

XOIIO's avatar

@johnpowell man, you need to kick this habit already, sheesh.

Jokes aside glad to hear things are going good.

chyna's avatar

Hi John! Do you care to give us an update? I’ve been thinking about you.

johnpowell's avatar

STILL ALIVE…

Get teeth on Thursday!!! It has been so long I am afraid I forgot how to time chewing and swallowing.

I realized how bad this could be the other day when I asked my sister how to eat rice. I used to eat a lot of rice and I couldn’t remember if people chew rice or just swallow it. I had my teeth pulled on the 12th of Oct last year. So it is just over a year of this goddamn motherfucking nightmare. It feels like it has been a decade.

I had been using the radiologist and oncologist as my general practitioner for the last year. Ear infection, make a appointment with the radiologist that costs 500 a hour. He has been a great sport about this.

But I finally got a GP. Her name is Nancy and she thought I should get a flu shot.

I don’t ever remember getting a flu shot since I used to hate needles. But she gave me one. And WTF.. It wasn’t even pinch, absurd I was ever scared of that. Try getting chemo for 8 weeks where it feels like they are pumping thick fire into your arm. I used to have the upmost respect for vaginal childbirth. The window has shifted and, meh, I could do it.

I had a dry run done with the dentures. They were essentially the finished product in form. But still needed to be shipped off to be made out of the final materials. The good news is they really kicked off my saliva production. I think the glands still work, but without teeth and chewing they just aren’t stimulated. So hopefully eating will be easier if I can get the juices flowing.

I had a uncomfortable back and forth with the dentist where, for some reason, I said people that say to just drink water between every bite don’t get that it is like jerking off with water vs. spit. A very different experience.

See you folks later!

rebbel's avatar

Lol, the jerking analogy :-)
Happy chewing!

canidmajor's avatar

Yay, teeth!

johnpowell's avatar

My mouth was in rough shape and it was difficult to eat for months before I had my teeth out. My last meal before teeth removal was Papa Murphys take and bake since if undercooked it was soft enough to not hurt. I had to cut it into tiny bites and strategically place them in my mouth.

Part of me wants to enter the solid food world the same way I went out. Family size cheese with extra sauce.

My sister is lactose intolerant so it would make up for the year of taco nights the monster has had upstairs while I poured formula into my feeding tube smelling dreams.

Dutchess_III's avatar

Pullin for Thursday to hurry up and get here!

johnpowell's avatar

Funny thing is my teeth are already done. They were done last week. But my dentist has been on vacation so I have to wait to get them.

tinyfaery's avatar

Yay teeth!

chyna's avatar

What will be your first meal

JLeslie's avatar

I’m so excited for you. I think you will be really glad to get your dentures in. It changes your face even when your mouth is closed.

LuckyGuy's avatar

Congrats! You’ll be looking like a movie star!

I’m going to buy stock in Taco Bell in anticipation of sudden increase in sales.

Dutchess_III's avatar

Taco Bell, I bet @chyna.

Hawaii_Jake's avatar

I never thought I would be so happy for someone getting teeth. Hooray for jp!

Dutchess_III's avatar

I never thought I’d be so happy for someone to get Taco Bell!
3 days.

Kardamom's avatar

Yo quiero Taco Bell : )

I hope your new choppers work well, and that you get to eat what you want.

Patty_Melt's avatar

https://youtu.be/5fz6XkWGpwQ
Chewing with dentures will at first hurt your gums. They will feel bruised after chewing things like tortilla chips, or steak. You will be happier with burgers, baked potato, beans, and such.
Some people get frustrated with the bruised feeling and quit wearing their teeth most of the time. If you just stick to it, eventually the gums toughen up, and you’ll be able to eat anything.

About rice, sure you can swallow it, but your stomach would take offense. You are best to chew everything except pudding and smashed tators.

I’m glad you finally get choppers.

Dutchess_III's avatar

Oh crap! It’s Thursday!!!

johnpowell's avatar

GOT TEETH..

They are weird. It feels like my mouth is full. Even drinking is difficult with them in. So I think I am going to give it a few days before trying to eat with them. And I am going to take it easy (I did get supplies).

But the good news is I am making a ton of saliva with them in. And I took them out about a hour ago and I am still producing saliva. So this is pretty awesome considering I have had a permanently dry mouth for the last ten months. And Patty, even if they hurt a bit it is worth it to keep them in for the extra saliva. I hate having a dry mouth.

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

rebbel's avatar

Congrats!

chyna's avatar

Congratulations! They are pretty!

flutherother's avatar

Congratulations! The light at the end of the tunnel was those teeth shining in the dark.

Dutchess_III's avatar

Love your Fluther shirt!!

raum's avatar

Whoohoo!
Happy Dentures Day!!

Hawaii_Jake's avatar

Look at them choppers! Ho’omaikai!

cookieman's avatar

Congo-Chompers!!

Dutchess_III's avatar

Congo Rat Chompers!

tinyfaery's avatar

I had a very Beetlejuice moment there. Congrats.

Mimishu1995's avatar

What will you do to celebrate this? :)

MrGrimm888's avatar

Nice job JP.

cookieman's avatar

I may have missed this in the details, but any gold teeth in those new choppers? Maybe and embedded, jeweled jelly fish?

johnpowell's avatar

NO BLING..

But I was digging through my phone looking for a picture of our rabbit “Commander Bun-Bun” to post in the pet in your living space question. I couldn’t find any pictures and can’t be bothered to walk upstairs and take one. Bun-Bun doesn’t live in a cage. Just a floppy eared five pound rabbit roaming around the house with the five cats and two dogs. It uses the litter-box the cats use.

But while I was looking for the pic I found a selfie from months ago and it kinda blew me away. So I took a current one and put them side-by-side.

I’m still really skinny. But holy shit

edit: And that tan on my neck isn’t from the sun.. I live in a basement in Oregon. That is from radiation. Permanent tan. Imagine what it did to the inside of my mouth. Raw hamburger mouth.

Dutchess_III's avatar

So you’ve put on some weight. That’s good. And I am so glad you are still with us.
Is your mouth going to start healing?

johnpowell's avatar

Mouth is in good shape. It doesn’t hurt anymore.

But there are problems. My gums are permanently numb and sweet stuff still tastes bad. I have accepted that chocolate will never actually be good again. At peak “radiation/chemo fucked my taste buds” chocolate tasted like eating the oil from a 20 year old lawn mower. Now it is simply a different flavor. Not good, but not bad. I don’t go out of my way to buy chocolate like I used too.

But I used to not like spicy food. Now I love it. Once I get used to the dentures and can eat with them I am going give some curry a whirl.

cookieman's avatar

Really glad to see you put on some weight.

johnpowell's avatar

I should make a dating app for people with feeding tubes. I could be a hundredaire.

MrGrimm888's avatar

I’m just glad you’re still with us JP.

Hawaii_Jake's avatar

John, thanks for sharing.

Kardamom's avatar

John’s gots teefs <3

Now that you like spicy flavors, you can squirt 10 packets of hot sauce onto your Taco Bell burrito supreme!!!

Cupcake's avatar

Thanks for the update – congrats on the teeth and weight gain! Looking good!!!

MrGrimm888's avatar

You should try some extra spicy boiled crawfish. They may be hard to come buy in your area. But they are GREAT.
They’re an intimidating food. It looks like a bug. But, when properly done, they’re amazing.

Pull the tail off. Squeeze /pray the meat out. Then eat the tail, while sucking the “head.” I eat the little claw meat too. It makes my eye’s water, and my nose run. But my god, they are fucking great.

Fried, or blackened alligator tail, is also great.

There’s always fried catfish, with lots of hot sauce. I HIGHLY recommend these things. As a spicy food lover…

Patty_Melt's avatar

Ima boop yer tummy button…
see if you giggle like the Pillsbury doughboy.

BOOP!

johnpowell's avatar

THIS DUDE GOT A CAT

Hello Apollo.

And yeah.. Pillowcases are in the wash. And the pillows have blood stains on them from when I got my teeth out. If my sister would give me a ride to IKEA I would get new pillows.

Patty_Melt's avatar

Pretty cat!
She looks opinionated.

Dutchess_III's avatar

Pretty cat! She matches the bedding. :D

johnpowell's avatar

THIS CLOSE TO BEING A REGISTERED SEX-OFFENDER!!!

I had to go to the dentist this morning to get some grinding done on the dentures to fit better.

I don’t make mouth-moisture anymore so I need to take a drink every few minutes. This means I need to pee a lot.

And I needed to pee while I was walking to the dentist. It was urgent, like piss-pants urgent.

A cop thought I was being weird as I navigated down to the creek to pee. There were no other places to pee.. This part of town doesn’t open until 10am.

Lets just say cops are not thrilled when you open your jacket and try to show them your feeding tube and explain why you have to pee every ten minutes. If I was a black kid that undid his jacket and lifted up his hoodie to show them my chest I would be so fucking dead right now.

Down by the creek is where I talked to the police.

https://i.imgur.com/9sIpeyG.jpg

Way down there. The followed me. It wasn’t like they were rolling by and saw me.

Patty_Melt's avatar

Cops don’t comprehend medical issues. They shoot down deaf people for not responding when orders are shouted at them to get on the ground. Epileptics die cuffed, blah blah blah.

I’m glad you are okay. So sorry you got pulled over for not wanting to wet yourself.
I would have asked them if they were trying to peek. That’s how lippy I can be.

MrGrimm888's avatar

Yeah, that is bullshit. When nature calls, you have to answer.

When my dog was just a puppy, I put her in a pet carrier. It was plastic, with a plastic handle.

Back then, I lived out in “the country.” One night, I was driving home, about 3AM. I was on a long dark road, about 15 minutes from home, when I was struck by the need to poop, like right away. I drove over 110 mph, to get home faster. I got home, in about 5 minutes. I was almost going to shit myself. I grabbed my dog’s carrier, and ran to my door. On the way, the damn plastic handle broke, sending my poor Wanda flying. Her carrier cashed onto the ground, barrel roled, and I just said “I love you baby, but I’ll be back. I had to leave her, and get to the bathroom. I just BARELY made it. A few minutes later, I went back outside, to find her carrier upside down. She was ok, but I felt so bad about the situation. But I had to go BAD. I give credit to my ass cheeks. They held together. I seriously thought about shitting on the side of the road. But I didn’t want to get in trouble. The road was frequently patrolled by police, was basically swamp land. I had to make an executive decision. Poop on the side of the swampy road, at 3AM, or get home somehow…

It’s fucked up. But I did what I did. Being an animal, with little control over what randomly happens to your body, is what it is…

Dutchess_III's avatar

My throat hurts and now I’m scared shitless!

johnpowell's avatar

Well. I went to the ER on Sunday night.

I went to change the gauze on the feeding tube. I pulled the old gauze off and blood started pouring out of the stoma.

I freaked the fuck out. And ran upstairs and woke everyone up to get someone to drive me to the ER. My sister drove.

My worry here was that if there is blood on the outside there might be lots of blood on the inside pouring into my stomach. I started feeling faint.

So I get to the ER and realize people in there know fuck-all about feeding tubes.

But after triage it was going to be a four hour wait. But since I was getting immunotherapy they wanted to get me out of the lobby fast. Especially with that Chinese thing going around.

So the only place they had to put me was a “psych room”. I was being told this I was being walked to the room and thought it would be cool. White walls and a bed. Sounds like my bedroom. And I felt good since it was one step closer to seeing a doctor.

OMFG.. These rooms are no joke. Every surface was concrete and there was a big metal door. Since I was not having a bad PCP trip the door was left open. There was a light that was impenetrable, a camera, and a vent. And the vent was so loud since you are basically in a cinder block cube and they need to move air. I have poor hearing and I found it uncomfortably loud.

There is no way this room helps people calm down. They must be doing massive sedation in here. Needles are the new padded rooms.

But the balloon in my feeding tube had slowly deflated. And it slipped between my stomach and “belly skin” and it just ripped the shit out of everything in the process causing the bleeding. Still massively uncomfortable. But in the AM I gong to interventional radiation to get everything checked and have the tube replaced.

And ER doctors know nothing about feeding tubes. I was embarrassed for them.

My six hours in the ER probably cost someone 15K.. LOL NHS

rebbel's avatar

I hope you are doing better right now.

johnpowell's avatar

Things are still tender. But in 129 minutes I have an appt to get things looked at and have the tube replaced. It is a pretty fast procedure. It takes about 15 minutes and it doesn’t hurt. But I will still take a lorazepam first. Because I love the benzos..

chyna's avatar

Sorry if I’m asking something you already covered, but if so, I missed it. I thought you already had your feeding tube out and were able to eat?

Dutchess_III's avatar

Yeah! Did you get your Taco Bell?

Kardamom's avatar

Oh dear. This is very upsetting. Especially because you have revealed what a lot of us have worried about, in the back of our minds, that often, in ERs, there is no expertise. They’re just moving bodies.

johnpowell's avatar

On the brightside I would bet they rarely deal with feeding tubes. If you have a heart attack or get shot I am sure they know their shit.

But there was basic stuff that I would think everyone that is a M.D. would know. Like how much fluid should go in the balloon, and for that matter what the balloon is. And the answer to how much liquid is 8cc. And I think if they felt I was in danger they could have had someone there quickly that could help.

And I can eat orally. The thing is I am limited to what I can eat. So I still use the tube since the formula is “nutritionally complete”. Once I can eat a apple or broccoli I will get the tube out. Until then I will keep it in so I know I am getting a “balanced” diet.

And it is nice to toss 8oz of formula, 8oz of milk, and a few scoops of protein powder in a bag and plug that shit in. Look ma, eating breakfast without hands and I am doing my morning email routine.

Dutchess_III's avatar

…Can you put beer in that bag??!!

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