IamA Childhood Cancer Survivor and Part-Time Pirate AMA!

How are the benefits as a part-time pirate compared to full-time? I'm looking into the field, not sure I want to walk the plank yet.

It's like an Internship, but they have to pick you, and if they don't...you'll end up walking the plank.

My daughter is currently going through treatment for leukemia (she is in remission) and I'm trying to be there as best I can for her. She is 6. Is there anything you would have wanted your parents to know at that time that would have helped you more while going through treatment? What can I do to make it easier on her?

Visit her, she may not ask for you to visit but she wants you to be there.

Like this?

Something like that.

I hope that you get a million karmas, too.

So do I! :3

Hello fellow one eyed person! I lost usage of my left Eye thanks to retinal detachment.

Nice to see a fellow Monocularist! Now may I ask a question?

How's your driving?

State won't let me. I took 4 out of 6 hours of driving with a tester and he was like "There was no way..."

Oh damn. Is your other eye ok?

I get 20/50 in it. and I can see so its okay.

20/40 here. I'll need some -1 Glasses.

Or just wear a monocle and look like boss.

Just need to find someone who does that...

here is a site for prescription monocles. Ask and you shall receive.

I love you, now get back to work!

Not a question. Just sayin', you could totally rock the monocle look.

I have.

A monocole and a patch?!...well doesn't this picture have everything awesome in it! This is cool.

Don't forget the top hat!

This is the best picture ever! my question, do you have a girlfriend/boyfriend? Are you in school now? Sorry, I feel like these are such personal questions! :)

No and yes.

[deleted]

Oh?

This is the most amazing picutre I have seen on reddit in a long while.

Ha, thanks. It's really all the photographer's work.

Awesome pic! Now be a pirate!

Oh, that'll come soon enough.

What do you want to be when you grow up? What would you tell an 11 year old that's about to go through a similar thing?

I've had hair in my mouth that tastes like shit, too- but I'm dating classier girls now.

I want to be a Biomedical Engineer.

Now, that's a hard question. I guess I'd tell them never to give up, never to look down, and always try to make the best of everyday.

I wish you nothing but the best!

I think you are a fine example of what a human should be!

I wish you nothing but the best, to you tooo!

I think OP is a pretty amazing guy. i admit, i snooped out his history.

Check out his bio, it's a great read

Should I link that in the main part then?

Do you still get hairs in your mouth?

Yup. Ever since that faithful late summer day in 2011 I've been growing them.

Where did that flap originate from that it has hair growth like that?

My thigh.

Posting in epic AMA just to let my grandchildren know that.

Put it in the time capsule!

How did you feel (emotionally) after the surgery? And congratulations :) I'm so happy for you!!

I was mad, after all that I was mad, I was mad at god that he didn't save my eye. Mostly because I had this idea of mind over matter, that if I thought I would survive, I would survive; That if I would keep my eye, I would keep my eye.

sorry to hear that :( How do you feel about that now?

I've made amends with God now. I will let him take me on the path he's taking me on.

This post is incredibly genuine. My mom died of a brain tumor when I was a kid and this sums it up exactly for me. OP you're are credit to mankind, not only that but you're bringing monacles and eye patches back.

not only that but you're bringing monacles and eye patches back

AT THE SAME TIME!

It's incredible to me that you're able to maintain your faith through the things you've been through. That's a testament to your strength of will. Did you grow up in a religious household or did you adopt religion later in life?

My father is Irish Catholic and my mother is Protestant. I grew up going to Mass until the cancer, and then went during remission to a regular christian church. I've kinda made my own religion in my head...

tell us about being a part-time pirate. also what do you think about medical/recreational use of marijuana?

edit: words

I basically just lollygag, and I don't really get paided...

I feel like the Medicinal use of Marijuana is perfectly fine, but the recreational use, when used before the brain is fully developed is NOT okay. Marijuana can stunt to growth of the frontal lobe of the brain.

Phone dead Noooo!

faith always comes up with something like this, and it seems you've come to a point of hard-earned peace with this experience up until now. what can you tell me that would help me to be there for a friend in a situation like this?

Just make sure he/she isn't lonely.

Don't care for AMA's but you've got an absolutely radical personality from your /r/wtf comments, man, so good on ya.

Thank you Captain Long Jons!

Did you have a consistent oncology unit you went to? Do you ever go see them? I bet some of the nurses would like to hear how you're doing.

I went to UCSF for most of the time, and since I go there for check-ups I visit them ever so often.

What was the worst part of treatment? Chemo, surgery or radiation??

Apples to Oranges tbh, but it did get worse over the years.

Hey I don't have a question for you, But i thought i'd thank you for being you. Its not easy to do what you do. Then to show others your heroics and let them pick the mind of you. I always wish i had a bit of Dr.Seus but damn it. if he isn't you. I hope this rhyme is friendly inviting and warm much like you. I felt like i shouldn't smile at all you've been threw but i just couldn't help it. Maybe because i often dream of being a pirate one without any shoes. That way every time I get a splinter i am reminded to be as tough as you!

Wow, I really like it, it's even better rapped out loud.

You said that you had some possible upcoming surgeries to replace the jaw bone and for a prosthetic eye. What do you feel are the benefits and the drawbacks?

You also mentioned pain in your jaw; is it a constant pain or intermittent?

The prostethic eye will cost a shitload, that's the only drawback.

The jaw bone's drawbacks, would be that, first of all, it is a surgery, and second of all, those pains. Those pains are weir. We can't figure out what they are; nerve, muscle, or phantom pains. The only thing that helps is if I put pressure on it, but if I placed the jawbone in the flap I wouldn't be able to do that anymore.

Do you chew food normally? From the picture it looks as if you only have about half of a functioning mandible and maxilla (same side)? Did I see correctly?

Harder food is harder too eat. I just chew on that one side with those teeth.

How was/is school and how has your social life been affected? Have you thought about how this can benefit you in your career or how you can help others (i.e. how can you make this an empowering point in your life)?

I was out for the end of 6th grade, beginning of 7th grade, the whole of 8th grade, the last of 9th grade, and the beginning of 10th grade. It didn't really matter too much to me until Freshman year, since I begun it with a few new friends and a few old ones, but once I took that year out my friends made new friends, and I had to make new friends, since I was put a year back. With this new mouth speaking is difficult, or rather it's hard to understand me.

I don't think I can answer your second question.

Will you be able to have kids in the future? If so, is the type of cancer you had hereditary? Also, what is your favourite thing to do to pass the time?

Props to you for having such an awesome outlook on life! There needs to be more people like you in the world :)

Uhh...I don't know about the status of that. I had an experimental chemotherapy that may or may not make you fertile. Kinda, I have a rare disease that causes early giantism, and may lead to cancer during puberty.

I liek Vidya Gaems.

How tall are you, if you don't mind me asking?

Nearly 6' 1". I was 5' 7" or so when the cancer appeared. I really should be taller but I bet the chemotherapy and radiation slowed it down.

What's your favorite food?

Also, you seem like an amazing person, thank you for posting this!

Simple Answer. Pizza.

May I ask how you eat it?

Like any other person with only half a jaw would eat it. With the half the jaw they have. I've been doing it for awhile though, since the tumor made it hard to eat on that side.

Do you see yourself marrying and/or having kids in the future? I wish you the best in whatever you do and I admire your attitude.

I hope to have a wife and children.

What type of cancer did you have?

This is actually a bit of "idk" topic. It was first diagnosed as Rhabdomyosarcoma, then as undifferentiated Sarcoma, and then Hardvard got it's hands on it last and called it a "Malignant Triton Tumor".

Dude you are an inspiration! I hope you are feeling better. I have undiagnosed but suspected MS and it really sucks to have this shitty auto immune disease hanging over my head all the time but It's people like you that show me not to be scared. You have the best attitude and the best sense of humor. As a 23 year old, it is always humbling when I meet someone younger than me that I can learn a thing or two from. I wish you the best!

23 years old? That's awful. My aunt (Who's at least twice your age) has MS, it's getting progressively worse, but she's hanging in there, like I know you will.

What is the life expectancy after such a surgery?

I really don't know. I think it was more about making to the surgery, as I was in hospice before it. The only problem would be the flap not being accepted by the body.

Are there anymore surgeries planned for the future? Like plastic surgery or the removal of the hair. Moreover, is there any way you could regain the vision in your eye?

First off, yes. My surgeon wants to do some adjustments to the flap, like fix the drooping lip and put a jaw bone in there. I'm actually going into Biomedical Engineering to create a bionic eye.

You're all, 'I can fix me. I am the tools, I am the technology!' So cool. :)

"I am the experiment!"

DUDE COOL! I'm a junior undergrad studying bioengineering at UCSD and researching retinal prosthetics. Not exactly a bionic eye, since they mainly treat degenerative retinal disorders and kind of work as a connection between neurons that are already there, but kind of close! I'm sure a lot of the technology would overlap, and it's the absolute coolest biomedical technology that's out there, in my opinion, and a lot of research is going into it. Electrical nerve stimulation is where it's at.

Well I think we could start from the optic nerve, since that is the main part...yadda yadda yadda...

Any idea what the different between biomedical engineering and bioengineering is? I hear UCSD has a great program.

What song goes through your head when you pillage and rape when your a pirate

"You are a pirate!"

Also various songs from Alemaster.

Is piracy more difficult in regards to today's economy? If you have a talking parrot, do they tax you as if he is also a person?

Yeah, they'll tax you if some Caribbean voodoo witch turns him into a Parrot.

What's your favorite game?

One? Screw that I'll pick a bunch.

• Skyrim
• Legend of Zelda: OoT
• Pokemon Emerald
• Age of Empires 2
• Warframe
• Borderlands 1/2

I like you. Let's be internet friends.

Deal!

Yes! Now with the most bad ass of part time pirates at my side, we shall rule the world!

Omg. How'd you know of my secret plot? It's secret!

Dont worry. You'll be the bad ass pirate/evil genius, and I'm the loyal minion. Your secret is safe with me, e-buddy!

But what's your theme?

Duh. Pirate wench.

Score!

Love all of those, you should try out the pokemon emerald randomizer!

What system do you mainly play on?

I've become a PC gamer as of the late but I do still play my 3DS from time to time.

Nice, if you ever want to play some games on steam or the 3DS with someone, I'll play! All my friends left to play WoW. :(

:O Add me! My Steam name is Cavalier.

Oh man there's so many, here's a link to my page, add me when you get a chance haha.

http://steamcommunity.com/id/AllMightyFuze/

Look up Bartholomew the Fearless.

So glad to see OoT on this list. By far my favorite game.

I got to play the OoT 3D version before I lost my eye. Beautiful.

I'm sorry if this comes across as ignorant or rude, but I'm curious. Your hair looks thin in your pictures, kind of like it's receding. Is that left over from the chemo? Or just genetics? Or maybe actually it's just the way the photos are taken, I can't tell really.

I lost all my hair, it grew back somehow a year ago, it's thin but I love it.

I can imagine! I never knew that hair stayed thin even after chemo had stopped. You're not only a strong person, you're a really cool and down to earth guy. Best of luck to you!

Well it's the radiation too.

what exactly do you do as a pirate ?

Steal, loot, pillage, drink, sword fight, search for booty.

Have you ever pulled one of the hairs by accident, while eating?

Nope.

Does it bother you to have the hair in your mouth?

Do others irl make fun of you for it?

How old are you now?

Are you going to get it repaired?

No, no, 17, now I will.

Young people fighting cancer were my inspiration during my battles with it. I would go in for my treatments and it seemed to coincide with this one kids schedule, she was 7 and always had a smile or giggle for me.

My question is this, how did you get to be so awesome?

Awesomeness is obtained by doing awesome things.

How did you go about not thinking about the future all the time? Like how did you not dwell on the idea that this cancer might very well end your life without any warning?

I didn't. I lived day-by-day.

Wow this is an incredible story. Life must have been tough.

My questions are: 1) what do you do for a living? 2) do you smoke marijuana? 3) are you in a deep financial hole because of this surgery? 4) are you seriously only 18 years of age? 5) what are your plans for the future? 6) how is life now?

1. I'm a student
2. No
3. Uhh...I feel like it but idk
4. Yes, I'll be 18 this summer
5. Community College>B.S.>M.S.
6. Different.

What do you plan on studying?

Biomedical Engineering.

What college of choice for bachelors?

UC Davis or UC Irvine

You should also check out UCSD. They have one of the best biomedical engineering programs in the country. ( BME grad)

I thought they just had Bioengineering....que the college student who is majoring in Bioengineering

I got my BS in bioengineering at UCSD and MS in biomedical engineering at UCLA. I would say that the names are pretty synonymous. The UCSD program was much more competitive though. In any case, I would recommend getting as much industry work experience as possible while going through school. As much as companies like grads with good grades, they all prefer someone with experience or someone who has had an internship with them.

What would you recommend for BS/MS in the Bay Area?

What's your educational situation been like? How do other students respond to your condition/appearance?

I think it might be different situation at my school since it's fairly small but it's fine.

Hey there, thanks for doing this AMA. I am wondering how people treat you knowing you are a cancer patient and are different from the norm? Society can be harsh sometimes.

Yeah, it doesn't look like cancer, most thing it was a car accident. But then again, does anyone really ever know why someone lost a limb or they're sick?

How much would you say that your medical issues have influenced you to study biomedical engineering? What do you hope to achieve?

Also out of curiosity, has the loss of your eye affected your depth perception?

Sorry for my bad English, it's been a long time since school and I shan't be making any corrctions

Alot, robots/cyborgs take up the rest of the influence.

Yes. No 3D for OP.

OP, you're pretty fly for a one-eyed guy.

I think I just wanted to ask about how your folks were/weren't able to help you navigate the illness and the obviously challenging life alterations that came with it.

My daughter has a sebaceous nevii patch (basically nothing, in comparison, I'm totally aware) on her left brow, and although the doctors said not to worry they also suggested keeping watch.

I think about her wellbeing a lot, and I'd love to hear that you got the support you needed, or at least can use the experience to share what you think should happen should I ever have to help her adjust to not having the easy path on her face space.

My mother was great support, my siblings up until the end. My dad didn't know to deal with something like that. We didn't have much extended family but we had a lot of friends.

who is the best superhero of these: spiderman, batman or jesus?

Superman.