I'm (20sM) the youngest person ever diagnosed with pancreatic cancer by the Mayo Clinic by almost 20 years! AMA

I almost forgot to mention, since they took out my entire pancreas, I'm officially a type 1 diabetic now. :/

Hey man! I work in one of the ICUs here. Best of luck on everything.

Just wanted to drop in and say the staff are pulling for you too 😉

Edit: Yeah, I 100% helped take care of you. Small world! Best of luck!

haha it's possible you know me, then! Which one do you work in? Also, major MAJOR props for doing what you do. I have a tremendous amount of respect for the ICU staff. They all seem extremely knowledgeable and well-educated. I have some major trust issues, but I trusted my ICU nurse with my life almost instantly. Dude is awesome! As a matter of fact, you just reminded me that i wanted to write to his supervisor to let them know how i feel.

Im assuming youre on one of the 7th floor icu. There are two. I am guessing you were on the one that I'm not on (as I would recognize you 😉). Unless of course you were only in the icu for a few days, then i just might not have been working!

Haha fair enough! I was up there for a few days last week and a couple days this week due to some bleeding that wasn't stopping. I actually ended up projectile vomiting blood all over while i still had the tube down my throat :/

On my way to do a scan right now and find out if I can leave today! 😀

Yeah! Keep kicking ass! (And doing your walks! Don't be a lump)

Lol I've been walking all over Francis/mary brigh

Hope you can leave! Good luck!

Thank you so much! Just got my last scan done and it was good news! 🙂

I'm having a beer for you tonight! Wooo!

hell yeah! I'll be taking a couple hits tonight, myself ;D

I can tell you I was on the floor with the gentleman waiting for a heart ;p

Okay! That WAS my unit!!! Awesome!

Lol awesome! Small world. Shame you weren't working while I was in ;p

I might have been on the other end of the unit hehehe,

Also possible! Either way, it's pretty awesome :)

Hey, fellow type 1 diabetic here. Just want to let you know that even with all the amazing technology for managing there’s no substitute for being meticulous and keeping good track of your blood sugars. However, managing it gets easier with time. I wish you the best of luck with your recovery and adjusting to the new lifestyle.

I really appreciate it! That's one thing I've got going for me at least. I already read labels a lot and am quite meticulous when it comes to other stuff

Diagnosed with VHL at 26 and had a Whipple procedure that they removed my pancrease. Welcome to the T1D club. I suggest looking into OmniPod 3-day disposable insulin pumps and DexCom G5 CGM (continuous glucose monitor). They make it so much easier to really see how things affect your blood sugar and requires a lot less jabbing with needles and lancets. Assuming you have insurance. If not, scratch that cause they are really expensive. But there are other brands that I just haven't looked into that might be cheaper.

Yup! I'm definitely planning on getting those, but they want me to "prove" that I know how to take care of myself and stuff before I can get the pump/monitor :/

That's true. I think the CGM might be easier to get first. But I can see them wanting to make sure you can (are comfortable with) inject yourself with insulin in case something goes wrong with your pod/pump. And doing the math manually does help you get an idea when to second guess the insulin wizards built into the pumps (no, I don't think I need 4 units of insulin for 1 oreo cookie, try again). The technology that's out there definitely helped me get my head wrapped around diabetes. And if you do go with DexCom, check out NightScout and Clarity and Share/Follow. With Nightscout, I can see my sugars tracked right on my FitBit Ionic watchface (and in a browser on my extra monitor at work). And with Share/Follow, my wife can get an alert if my sugar drops too low and I'm not paying attention because I'm in the zone at work or on my bike with headphones. And Clarity has a lot of great reports to see trends and A1C estimates based on the readings from the DexCom.

PM me if you get approval and are interested in any of this. I can go into details or point you to a few links/communities.

Awesome stuff! I really appreciate you taking the time to write all of this for me. I'll definitely send you a pm when I get the DexCom

Glad to hear that the surgery was successful. Are you going to be given a support animal upon your discharge? If you could have a choice of any animal in the world to be your take home support animal, what would it be? Why is it a sloth?

ahahaha omg this made my morning. Sloths are awesome, but unfortunately i have an awesome cat already. Looking to get a dog soon possibly, though.

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Many two week stays, huh? That sucks to hear, i'm sorry. Why do you have to visit so much?

I've spent most of my time watching netflix/hulu. I originally intended to play my xbox, but I felt so horribly most of the first week that i didn't even want to set it up :/ I also had my girlfriend/fiancé and/or my parents by my side the majority of the time, thankfully. Although, to be fair, i definitely needed some alone time after awhile.

What do you like to do?

So are you considered cured? If not, what is your future treatment plan?

Wishing you the very best in recovery.

I'm considered cured!! :) I'm sure i'll have to get regular exams, though. Also, i'm now a type 1 diabetic, so that's something i'll have to get used to

That’s amazing dude. I’m sorry about the T1D, but hell, that pancreas tried to kill you. You’re better off without that mofo.

Lol well put, m8! Well put

I don’t mean to be rude, but how are the bills stacking up? Are you receiving assistance?

Just curious as to how that all works.

Not rude at all! My nurse told me that it's about $10,000 a night to stay here.. and i've been here almost two weeks!!

Basically, i'm EXTREMELY fortunate to have both a good insurance plan and medical assistance. I honestly feel like i've been paying less to deal with cancer than i did for my kidney stones lol

Wow that is pretty expensive without insurance. Well I’m routing for you dude! Hope they give you lots of bud to smoke!

Haha don't worry, I've got my card! The only problem is that, in Minnesota, our medical marijuana is extremely expensive. It's more worth it to make the trip to a different state :/

Minnesoooota ey? I’m from Illinois and can’t even get a medical card for my severe chronic pain and anxiety.

have you tried getting cancer? xD lmao sorry. My sick sense of humor has definitely helped, though.

Dude don’t worry about it. Dark humor is my shit. Ironically I had a cancerous tumor removed a few months ago. They caught it very early and it was very small, but I never really saw any of the bills. I was lucky enough to have the out-of-pocket costs all paid for by a close friend of mine. It’s funny because only 2 people know about that, now 3 (you’re the 3rd lol). I never told anyone the truth except for my one close friend, an old friend/ex who I told before I found out i was most likely going to be okay. Man I still miss that girl. Sorry, that’s a different story.

Damn, son! Glad to hear you got that cancerous shit cut out of you, too! Honestly, I don't think that's a terrible thing. I mean, why worry everyone if it was small/early/easily treatable, you know? Anyways, I'm sure you miss her, but you don't need her, man! You'll find someone even better.

Thank you for agreeing with me on that. The only thing is, i wouldn’t have told anyone else no matter what. But it’s just so they wouldn’t have to worry.

Yeah I’m coming to realize I don’t need her. The problem is that doesn’t change the fact that is very much like for her to be around. It’s been almost 2 years already. She was ‘the one that got away’ so to speak. Hands down the most amazing girl I’ve ever met. Something went wrong along the way and all of a sudden she’s gone. I never got closure, and I seriously doubt she’d ever feel for me again. As a result, my confidence is pretty much at zero. I literally can’t talk to girls unless they start off the convo and even then I’m awkward as fuck now. If you knew me, you’d know that’s a big change from who I used to be. All my friends say I’ve changed big time since her. They resent her for it too. Honestly, I’m relatively happy but just incredibly lonely. The only good thing is that being on my own has given me a ton of motivation to become financially successful, and I’m well on the way to that.

Sorry I don’t mean to make this about me. I just needed to vent.

Nah, man. No apologies necessary. We all need to vent sometimes and it sucks, but we don't always get the opportunity to do so when it's most important. Anyways, I hate to hear about your confidence being shot as a result of her. I can definitely understand it, but at the same time, fuck it! You've put her on a pedestal and quite frankly, she doesn't deserve to be there.

Have you heard of mindfulness meditation? I think it'd help you out some. Basically, you sit in a comfortable position and breathe. That's it. You focus on the sensation of air entering and leaving your nostrils. I usually count to 10 for each inhale/exhale until i've got a rhythm going. If your mind wanders to her, it's okay. Acknowledge that your mind has wandered, but bring it back to your breath. Start worrying about finances? It's all good, acknowledge it and return to your breath.

It sounds like a bunch of BS, but it helps a lot.

Maybe you should have done more weed and you wouldn't have gotten the cancer...

aha trust me, i tried

My friend qualifies to get medical marijuana (Stage 4 ovarian cancer) but there's only one doctor in the area who's certified to prescribe it. He doesn't take insurance, sees patients like 3 hours a week, charges $350 for the first visit and $250 for each followup, which I believe is monthly. And that's not even counting the fact that she has to then go to the next county over to find a dispensary, and her insurance won't pay for the weed either. So she has a friend who supplies her with what she needs.

Christ, isn't it ridiculous how many silly hoops we need to jump through?

Oh, and i forgot to mention, that doesn't include my chemo/radiation/surgery. literally 10 grand just to stay in a room here!

That’s nuts. It definitely doesn’t cost that much per person to operate the hospital each night. I bet it’s not even half that.

lol right? My father always told me there are two systems you want to avoid at all costs. The judicial system and the healthcare system. Everyone in America knows how messed up our healthcare system is. It's just a matter of them charging insurance as much as they can get away with, while insurance does their best to find any reason not to pay.

Just be best friends already!!!!

Sorry, my girl has claimed that title ;P

2nd best friends then!!!!

Now that's a plan!

How is it dealing with the insurance companies? How much of this is going to be out-of-pocket expenses?

Honestly, i've been such a mess that i haven't been dealing with the insurance companies myself. I've been very fortunate to have my mother deal with them on my behalf. Luckily i have fairly good insurance and medical assistance, so my out-of-pocket expenses should hopefully be a few grand at most

i can tell you that my mother, pharmacist, and doctors have been having a hell of a time dealing with insurance, though. They'll do whatever they can to avoid paying, so i've been trying to jump through all of the hoops as best i can.

That's pretty shitty. GL tho

thank! I appreciate it

Wow. I’m so glad you’re ok. Do you have a family history of cancer? Do they have any idea why it got to you, especially so early?

Unfortunately, i do have a family history of cancer. I was tested for the "cancer gene," however, and it came back negative. Although they did say that it's possible it's genetic and we simply don't have the means to identify the gene, yet.

As far as any idea how i got it, we have none. I'm just extremely grateful i live within a reasonable drive of arguably the best hospital in the world.

Do you mind my asking, before your diagnosis, what were the main foods you were eating? Were they processed etc? Lots of meat? I'm not a crazy vegan or anything, just curious

Lots of the like frozen vegetarian corn dogs/burgers and stuff. Lots of soy products. Lots of vegetables and fruits. Lots of cereal and almond milk. I'm not a huge fan of meat. I'll occasionally eat it begrudgingly, though

Interesting,Do you think your diet had anything to do with the cancer, were you active? Also did you consume a lot of sugar?

I have no idea. My doctors had no idea either. It's EXTREMELY rare to get pancreatic cancer so young. I was fairly active and not a big fan of sugar. My drink of choice is water. Although to be fair, I was a lot less active the last couple years than when I was younger

WoW, that's so odd. Thanks for the replies anyway!

No problem :) I've been enjoying the conversation!

How are you adjusting to managing the diabetes? I imagine it's quite difficult!

luckily i have the nurses to help me get into a routine before i'm home and on my own

Did you ever have acute pancreatitis in the past? Or take really intense medications that affect the pancreas? This is do bizarre to me.

Nope :/ never had anything wrong with my pancreas. My grandma died of pancreatic cancer, but I was told she had the common type, whereas I have the rare type

Well I hope they figure out what happened or at least how to monitor it for your kids/siblings!

Childfree :) but yeah, i'm sure my siblings should get frequent checkups as well

How often do you get to see the support animals? Hope they do you good. Wishing you the best!

You get to see them about twice a week if you'd like. I was super lucky that Remi came to visit when i was kind of down in the dumps :)

Aww. Sounds great. Hang in there; we’re all rooting for you!

Many thanks :) I appreciate it

Have you considered/discussed the possibility of a pancreas transplant, down the road?

Not really. I originally thought they'd only be taking part of my pancreas, but it ended up being necessary to take the whole thing :/

Here's mine: what is (20sM)? 20 years old. Male. Shoveler? Sarcastic? Spiffy?

It just means i'm in my twenties, but not comfortable giving my exact age

Are you seriously trying to be a dick to this guy? O.o

i think he was just legitimately confused lol. It's early

So I'm assuming you have the type of pancreatic cancer that's treatable and curable, as opposed to the vast majority who find out when it's already too late and go quickly. How do you feel about Steve Jobs and his decision to treat his curable cancer with alternative medicine?

I think he fucked up. It's one thing if you don't want to go through all of the bullshit and just accept death, but Steve wanted to live and just went about doing so the wrong way (imo)

Curious person in the medical field. What caused your pancreatic cancer? Or are they unsure?

they're unsure :/ they tested for a gene, but it came back negative.

I work in surgery and was curious, was your procedure open or laparoscopic? How long was the procedure? Do you know if you had just one surgeon or was another assisting? Its my dream to work at Mayo Clinic, glad that you were able to receive the best possible care and wish you a speedy recovery :)

Hey! Thank you for the well wishes. I had two main surgeons working on me. Doctor Truty And Doctor Bower. They had me wide open for ~10 hours. I'm extremely lucky, as they're the only ones who could've done my surgery. The whole reconstructing an artery thing is just amazing to me! I have immense respect and gratitude for my surgeons!

WOW what a story! Would you think about donating it to the 'Periodic Table of Human Elements'?? It's being shaped by human moments of heartbreak, triumph, and bliss like this.

periodicttableofhumanelements.com

Just checked it out! Definitely cool :) I'll have to think about it

No problem. Thanks for replying. Man that’s rough. Seems like you have a real positive outlook though which is awesome! I know what it’s like to live with an affliction after surgery, though not as serious as yours of course. Had brain surgery 6 years ago to remove a huge blood clot that was making me go blind and causing seizures just about everyday. But I still have seizures, vision problems, other health issues and I have to take multiple different meds for the rest of my life. But, could be way worse right? Lol. Good luck with everything 👍

Oh wow! Isn't it funny how we view our own illnesses compared to others? From my perspective, your situation seems way worse! You've got a pretty good outlook yourself, though!

Haha thanks! Maybe it has to do with the fact that when you are living with an illness everyday it kinda becomes the norm and so when we see or hear about other people that have health issues we see how much it actually affects their lives. I think the anxiety about having a seizure in a random unfamiliar place is actually worse than actually having a seizure. It really sucks knowing you could basically go unconscious at any moment with little to no warning. My seizures themselves last only about 10 minutes (although the ensuing headache and usual bad tongue bite last longer). I just look at it with the perspective that things could always be worse.

Yeah, you're definitely right. When you live with an illness for so long, it just becomes the normal thing. It's just like how when you live with chronic pain for years, your idea of what pain is completely shifts

Congrats and beating it!

Do you feel like you dodged a bullet?

On the one hand, yes. I dodged death. On the other hand, I'm getting slapped in the face with diabetes and other side effects :/

Wow you are very brave and strong! Just a few quick question, well maybe not a quick one to answer but was wondering this as soon as I read about your gallbladder and pancreas removed. I know the gallbladder is pretty easy to live without but, what kind of side effects can you expect without a pancreas. Are you going to have to take insulin for the rest of your life? Are you now at a higher risk for diabetes? I hope you recover quickly and fully. Great job on kicking that cancer’s ass!

Sorry i took so long to reply! Busy day. I'm getting out of the hospital in less than an hour :D

I am now a type 1 diabetic. I have to take insulin and creon capsules for the rest of my life :/

First, Mayo is awesome - some of the best surgeons and docs around (we are regulars in the oncology clinics there). Glad they were able to get clear margins for you! Sucks about the type 1 though.

Will you be doing continuing care there? Both oncology and endocrinology?

What rare type of pancreatic cancer was it? Do they feel like this was a curative surgery or is there a likelihood of it returning?

Have you been over to r/diabetes yet?

Seconded, Mayo is beyond awesome! Yes, i'll be doing my continuing care here. I'm not sure what the exact name is for it, but i know like 90% of pancreatic cancer is one type, and i have the other.

I havent hit up /r/diabetes yet

My mom just finished up chemo for pancreatic cancer (she actually had the surgery first because they were lucky enough to find the tumor when it was small enough to operate on). Did you have a different surgery from the Whipple Procedure?

Yeah, i think the difference is that your mother only had the head of her pancreas removed, whereas i had the entire thing taken out.

Why are you afraid to show your face?

because it's unnecessary