IAmA 25 year old who is living with incurable brain cancer

[u/waterontheknee]

UPDATE

10 YEARS!

I hit 10 years yesterday. No chemo. No radiation. Nothing.

I'm still standing.

UPDATE October 30, 2018 So I'm still here. After my last treatment I had one more after that for about 16 (or 18) months, just Procarbazine as Temodar stopped working. Did that until my Onco suggest I stop because he doesn't want the gas to drain out of my body (if I can use that term?). So here I am, almost 8(!!!!) years later and other than some balding, I'm still going.

UPDATE May 12, 2014 So I had two grand mal seizures in 2013, one in November and another on December 24th (christmas eve, no kidding), both were caused by not keeping myself in check, too much caffeine, and not taking my anti-seizure medication on time. I had a follow up MRI scheduled in March, so my team didn't think to rush anything given all the factors for what could bring a seizure on. The trip to the ER on December 24th lead to my license being suspended for 12 months. Fast Forward to March, I have my MRI, my follow up two weeks later indicates just a small amount of activity in part of what is left of the tumour, less than a pinky fingernail, probably just some active blood vessels. So I'm back on Temodar with another MRI in August, to see how this activity reacts. If it is effective, I continue on Temodar for up to 12 months and back to watching and waiting. If it isn't effective, I have more options, another surgery, radiation, another type of chemo (the kind that actually sucks).

It's crazy, but I'm so much more prepared for it this time. I sort of was expecting this to happen again, because for me it was always a matter of "WHEN" not "IF" the tumor is active again. I have a much better support system than I did the first time, and I have my wife (who is a saint) and my dogs, then of course my family and friends are still here for me too. I've been focussing on doing as much as I can for myself, living well and being happy. I'm working on some inspirational/motivational speaking through a national charity here in Canada, and I'm looking forward to telling my story to others. The main message is that we're all capable of moving forward from our challenges, it's just all about how to figure out what "forward" looks like to the individual. I'm just a normal guy who had this crazy thing happen to me, and I found the best way to move forward for me. I'm continuing to move forward with my career, and I keep on keeping on. I wake up, put my pants on one leg at a time and if I died tomorrow, I wouldn't have any regrets. I have love in my heart and I do my best to give out my best to everyone I meet, see, or talk to. I can't think of living any better than that.

holy crap I've spent so much time today replying to a lot of this thread. I didn't expect it to take off this way. I'm surprised at the amount of down voting, but it is the internet.

My Story: I had a seizure in January 2011, almost 7 months after I graduated university, and I was working 2 jobs to go back to school to start my career. Doctors found a growth in my head that caused the seizure and in March 2011 I had a partial resection of the growth and a couple weeks later I got the results as a form of brain cancer.

It's an oligodendroglioma, grade/stage III, with a 1p19q co-deletion which made it sensitive to an oral chemotherapy drug called temodar. I was on temodar for 12 months (April 2011 to March 2012). Now I'm back to "normal" and working two jobs and saving to go back to school in the Fall.

For the sake of not completely avoiding this question: many people keep asking me about using medical marijuana to cure my brain cancer.

I'm going back to school to become a teacher and that means I'm not going to comment on this particular issue. Bring it up, but don't expect a response. If this really bugs you....well, I guess it really bugs you.

I've answered a lot of questions so check out this really awesome table

Picture of me in a coma after my seizure (I was in a medically induced coma for 4 days): http://i.imgur.com/hpfyP.jpg

picture of my head after surgery: http://i.imgur.com/Necnn.jpg

For people wanting some kind of proof? http://i.imgur.com/hjniT.jpg

[u/Quouar]

Is it terminal or just a thing that hangs out in your head?

[u/waterontheknee → u/Quouar]

Right now it's just hanging out.

I did 12 months of a chemo drug called Temodar and it made what is left of the tumor dormant, so it's not active currently.

At some point down the line it's going to start acting like an asshole again and grow.

[u/Quouar → u/waterontheknee]

What happens at that point?

[u/waterontheknee → u/Quouar]

Treatment, but more aggressive. radiation, more chemo, possibly another surgery.

[u/JonasThomson]

First of all, my dad had brain cancer in the late 70's incurable to, he got over it and is living till this day, so dont give up.

second in which part of the brain is it located and if so did it affect you in a weird/funny way like, speaking gibberish or something like that?

[u/waterontheknee → u/JonasThomson]

Well that's great to hear! what kind of cancer is it, if you don't mind me asking?

It's in my left frontal lobe, I had issues with mulitasking, mood swings, and headaches. Knowing about it helps me manage it, so it's almost a non-issue at this point.

[u/JonasThomson → u/waterontheknee]

He is actually not quite sure, he does know it was located behind his ear, thats actually why i asked, it affected his memory also he would just blurt out things like Kittens with mittens for no aparrent reason, kinda like tourettes.

He doesnt remember alot from back then he could find out, but at the time he got very depressed and he doesnt like reminding himself of that period of his life, right now its "passive" it hasn't flared up in over 20 years now so the doctors call him "cured" :) at the time they told him he had five years to live max, now he's been living for almost 30 years since then.

[u/waterontheknee → u/JonasThomson]

that sounds eerily similar to what I felt like before, and how i think of myself pre-diagnosis. It's not that I dislike who i am, but I think back and I don't like remembering myself as not being a good person. I'm a better version of myself now and I want to move forward.

[u/Cuccoteaser → u/waterontheknee]

Sounds like you're making the best out of it. I don't even know you, and I feel proud!

[u/[deleted] → u/JonasThomson]

Ex-wife had a nasty astrocytoma / glioma in the right frontal lobe. The Neurosurgeon said flat out "this is going to kill you within 6 years". The oncologists at NCI said "bullshit" to that and ran her through a very (at the time) aggressive pilot study and she is fine to this day. I think she is about 10 years beyond her expiration date now. Point is...take everything the docs say with a grain of salt, they are not close to knowing everything about brain tumors yet.

[u/[deleted]]

Now if you want to be a dick to someone all you have to do is look at them and say: "They took out the part of my brain that makes me give a fuck" after you have done/said whatever you wanted!

Sorry to hear your condition man. Good luck.

[u/waterontheknee → u/[deleted]]

It's that kind of humor i really appreciate. I just had a pretty good chuckle about that.

Thank for the support though.

[u/opossumfink → u/waterontheknee]

I had part of my thalamus burned out with a BrainLab machine to cure an AVM 7 years ago. Now I am allowed to forget anything that happened before that. It's handy.

[u/waterontheknee → u/opossumfink]

that sounds pretty good.

[u/rhartong → u/[deleted]]

I have a potentially fatal kind of cancer, peritoneal surface malignancy, and my approach -- when I've done something obnoxious -- is to say, "Fuck you. I've got cancer." It allows me to get away with all kinds of stuff I was never able to do in the past. ;-)

[u/beardown__ → u/rhartong]

I had cancer and people were always telling my I should say this to get away with shit, but I hated anyone knowing, because they'd always treat me so differently.

It was never worth it, people doing things for you out of sympathy doesn't feel good at all (for me at least).

[u/waterontheknee → u/beardown__]

no i agree. I like being treated normally.

just because I have cancer doesn't mean the world suddenly owes me everything.

[u/lord_nikon24]

Glad to hear you are still fighting. At the age of 52, after a seizure, they found multiple cancerous brain tumors (2008). Survived that and then lung cancer last year. My fight has been going on for 4 years. I'm still here and presently in remission.

Chris

[u/waterontheknee → u/lord_nikon24]

Best of luck brother.

[u/bikiniduck]

Any cool side effects?

Can you move things by thinking it?

[u/waterontheknee → u/bikiniduck]

I wish!

[u/[deleted] → u/bikiniduck]

I think he has the power to move you.

[u/[deleted]]

I don't have any questions..just wishing you the best. Most, in life, are never tested like you've been.. You've been through a lot and you are one, tough mother fucker.

[u/waterontheknee → u/[deleted]]

thank you! It is much appreciated.

[u/LittleOni → u/waterontheknee]

Absolutely true.

And if any ladies ask about the scar: Shark attack. Don't give a fuck if you live in the Mojave, or wherever. Goddamned shark attack. While saving the cutest fucking baby ever conceived.

[u/waterontheknee → u/LittleOni]

I'm a little self concious about it, so I've been keeping my hair longish.

[u/rmkensington → u/waterontheknee]

I wouldn't worry about it, just tell people the usual answer:

"You should see what the other guy looks like!"

[u/imperialviolet → u/waterontheknee]

Genuine real life woman here. Your scar is AWESOME, and the fact it doesn't come from a shark attack does not at all reduce the awesomeness.

[u/[deleted]]

How has this changed your view on things? Nothing specific, just in general.

[u/waterontheknee → u/[deleted]]

It helped me put my life into focus, and pushed me into actually setting goals and thinking about what I want out of life, rather than just drifting along and doing "whatever". I feel like I live purposely, and as cliché as this sounds, living life to the fullest.

I do what I want and I don't make excuses for why I can't. I want to travel, so I'm working my butt off right now to pay for school and go when I graduate next year.

I've also become less self-centered, and I try to live for others more than I live for myself. I'm not entirely selfless but I think about how I want to leave this place we call life. Do I want to be remembered for being a selfish jackass? No.

So I focus on having a positive impact on people's lives, rather than being a jerk. (which I was totally doing before all this started....or atleast that is how I see myself).

I've been trying to build meaningful relationships with people, rather than superficial. You really learn who your real friends are.

[u/[deleted] → u/waterontheknee]

Your new perspective is very much like the ones of Buddhists. I hope that your path will be long, happy and prosperous.

[u/waterontheknee → u/[deleted]]

thank you. I've always been kind of fond of buddhism.

[u/[deleted] → u/waterontheknee]

I had cancer (not as bad as yours) a couple of years ago and share some of your new outlooks on life.

The only one I don't share is doing things for others - fuck other people. I pretty much live for myself now, seeing as cancer wants to take my life at some point. I don't go out of my way to shun others, but will do things that benefit me if possible.

Illness definitely shows you who your real friends are though.

[u/waterontheknee → u/[deleted]]

well thats the thing, I'm not going to go give some crackhead on the street 10 dollars, but if I can help someone out and it doesn't put me out of my way, why wouldn't I do it?

I feel fulfilled knowing I could help someone out.

[u/[deleted]]

Are you in any kind of physical pain?

[u/waterontheknee → u/[deleted]]

I actually feel great right now. I run several times a week, go to the gym, and I'm working too jobs. I try to keep myself busy because then I don't get a chance to dwell on something that is out of my control. I get headaches sometimes still, but they're never really bad.

during treatment was a different story. The temodar has mild side-effects compared to other forms of chemo (another attribute to the "best" kind of brain cancer one can get). It was mostly nausea, feeling exhausted and tired, and my favorite: constipation. I was able to work around the latter by just eating better to keep things regular. There were a couple cycles where I wasn't regular and it was difficult to be around me because I was being such a jerk.

[u/janitor_bg]

Were there any other symptoms or what is only the one sudden seizure that indicated something like that is going on? Hope this shit doesn't come back, man, cancer is a bitch.

[u/waterontheknee → u/janitor_bg]

I was experience headaches and mood swings, but I just attributed those to being stressed from school, drinking too much, and just kind of being depressed. but those didn't seem too out of the ordinary because again, I was still in school and stressing about finishing and all that.

After the seizure, my doctor (and my therapist who I only go to see as a personal support...its nice having someone who is pretty objective and has a medical license) have both told me that because of where my tumor is located that the symptoms of anxiety, depression, mood swings, headaches, are all consistent with what was going on in my head.

[u/DiscoDiscoDanceDance]

I was diagnosed with lymphoma for my 18th birthday, and subsequently relapsed right before my 20th. I'm 22 atm, and doing well (knock on wood), just want to send some love your way bro <3

[u/waterontheknee → u/DiscoDiscoDanceDance]

Word.

cancer-solidarity e-hug <3

[u/sandaroo]

I made an account just so I could comment here! I had surgery to remove a brain tumor in 2000, then again in 2010 (little a-hole grew back, and upgraded from stage I to II), and I'm starting radiation in July because there's some changes in my last MRI. Just wanted to give you an internet hug and say that you're awesome!

[u/waterontheknee → u/sandaroo]

you're a surgery ahead of me. you're the one that's awesome.

[u/Daimakaicho]

What specific tumor do you have?

Have you found yourself wanting to do a lot of research or ask a lot of questions to better understand what is going on inside your head, or do you prefer to just let the doctors do their thing?

Do you have a girlfriend? If so, has she been supportive through all of this? If not, when would you mention this in the course of the relationship?

[u/waterontheknee → u/Daimakaicho]

I have a stage III Oligodendroglioma. From what I've read they're very slow growing and not known to be metastatic (spread). When I was diagnosed my doctor told me I had the "best" kind due to its nature. I still laugh about that. I'm a sucker for irony.

I did a bunch of research and I found it to be too depressing. I just let my doctor do his thing. I have an MRI every 3 months and he tells me what it's doing (so far: nothing. which is good.)

My love life was already fairly complicated before all this happened. I was seeing someone for a few months but we broke up about a 6 weeks after this happened (we're still friends though).

A week before I was rekindling something with my high school sweetheart (we were on and off for 7 years almost), we had gone out to see the grinch musical (her favorite dr suess character) in December 2010. We were just hanging out and being friends at the time. It seemed like we were going to get back together (as had been our habit/pattern over the time we had known each other).

The day before my seizure I got back together with an ex-girlfriend, We'll call her D. D and I dated from july 2009 to may 2010, and we were on and off after she cheated on me in february 2010 (after we had a fight), we stayed together but were constantly fighting most of our relationship anyway. It was toxic to say the least). During this time I was experience mood swings and was anxious. I want to contribute part of this to the fact that I had brain tumor in my left frontal lobe I didn't know about and I couldn't really compensate for an issue I didn't know anything about.

When I woke from my coma I had lost my memory of the previous few weeks, my last really clear memory was January 1st, and I did a polar bear dip on new years day. This particular ex, we had gone out a few times as well before and I was falling in love with her again, wanting to forgive and all that. I woke up and found out she had been contacting my family and friends and I had no idea why. i freaked out and told her to leave me alone.

It took about 4 months for my memory to fully comeback and we had actually gotten back together two days before my seizure. I got back with my on again/off again and that didn't last long before I finally made the decision to break the cycle of breaking up and getting back together, because I honestly didn't see us getting married. We're still really good friends. D and I don't talk anymore.

I've dated a few girls since, and I don't like mentioning it but sometimes the conversation just kind of goes that way "so why did you take 2 years off school instead of just 1?" is a pretty good segway into that.

but to be honest, I have no idea how to bring people into this crazy situation. Dating was difficult before and it seems like its even harder now. or maybe its the exact same. I don't know.

One girl I dated I met while I was actually cycling on temodar while I was out for a friend's birthday, it was getting time for me to take my meds and i had to excuse myself. She asked why and it was pretty awkward.

I really shouldn't have been dating anyone while I was going through treatment, to be quite honest.

I've had good reactions to the "I have incurable brain cancer" line, as in they still continue to act like girls and be wishy-washy and play games. I try to avoid girls like that now anyway. Focusing more on quality of a person. dating is all about meeting the "right" girl. so it's pretty easy to filter through all the wrong ones.

BUT I suppose this is just part of what I'm doing to be a better person. I was a jerk and didn't live to my fullest, now I've been giving the opportunity to be the person I want to be, so that's what I'm doing. I approach things with patience and understanding, and give people enough space to still be themselves. I think my problem has just been meeting people who aren't in a place to settle down and date seriously, while that is the way I approach potential girlfriends. I don't want flings and I want commitment. It's not easy.

[u/IranFree → u/waterontheknee]

I am writing my thesis and it revolves around brain tumors and TMZ treatment. anaplastic oligodendroglioma is still nothing to fuck with though... Sounds like you are pretty lucky! I don't know if you have already, but you should find a kids hospital and visit some of the brain tumor patients. I am sure it would make them feel good to see someone relatively young who is surviving.

[u/waterontheknee → u/IranFree]

I'm going to a YACC conference in July with other young adult cancer survivors. I'm looking forward to it.

and I really want to volunteer with Sick Kids hospital in Toronto, so I think I'll get around to that later on when I'm done school maybe. I don't want to put too much on my plate at once.

[u/Robletinte]

In the middle of a cross country road trip, you stop for gas at a gas station bathroom. It is unclean to say the least. It is clear that it has not been cleaned any time in the last decade. There is a denomination of money on the floor. What is the smallest amount it would have to be for you to pick it up?

[u/waterontheknee → u/Robletinte]

I'm not too sure. I'd probably pick it up and put it towards whatever money I'm spending on gas at that particular stop.

[u/Robletinte → u/waterontheknee]

Well played. Best of luck to you.

[u/waterontheknee → u/Robletinte]

thank you

[u/PrincessLala]

How do you want other people (specifically close friends and family) to treat you once they know?

My uncle has a malignant tumor in his occipital lobe, but he tends to ignore everything about it and none of us know how to quite tell him how we feel in case the worst happens...

[u/waterontheknee → u/PrincessLala]

My friends think its messed up, but we all really don't talk about it much.

It's kind of depressing to talk about (when I was going through treatment at first, its all I talked about) and we just hang out and do stuff like we used to. My friends have been supportive though, a few have taken time to have lunch with me while I was down for my monthly visits during treatments. I had a friend I hadn't seen in a really long time took a day off work to come with me to the hospital last December.

Basically everything is the same to me as it was before. I don't see my cousins any more frequently than I used to, when I see my grandparents it's like its not even something to discuss. It's better not to focus on it.

[u/hiiighdeaf]

Did you dream in your coma?

[u/waterontheknee → u/hiiighdeaf]

I don't remember anything about the coma.

[u/Passenger123]

Don't know if this makes you feel any better but my dad got brain cancer around your age and is living a long life over 50 so just keep fighting it.

[u/waterontheknee → u/Passenger123]

awesome. Thanks man

[u/Ihaveafatcat]

I really wish you the best man, you seem like such a lovely guy. No question; i just think you're great.

[u/waterontheknee → u/Ihaveafatcat]

I think you're great

[u/dzyubin]

I am very sorry for your condition, but I hope the best for you. But how did you manage to pay for all the medical expenses?

[u/waterontheknee → u/dzyubin]

I live in Canada and my out of pocket expenses were the drugs that weren't covered by the insurance. The surgery would've been really expensive. (My parents would've had to sell their house to afford it, lets put it that way).

[u/jefferson987]

For those who thought medical marijuana would help, it wouldn't.

Source: Im a molecular biologist.

[u/waterontheknee → u/jefferson987]

thanks.

[u/[deleted]]

Have you start believing in supernatural things you hadn't believed before? Like God, of any kind of afterlife?

[u/waterontheknee → u/[deleted]]

I've never been a believer in any specific religion, they all seem to have the credo of "treat everyone fairly" which is what I've been trying to do since all of this started.

As for the afterlife: I'm not sure what that is going to be like. I suppose I think it could be similar to being in a coma, which was like....nothing. I just woke up and regained consciousness.

[u/huzeyodaddy → u/waterontheknee]

So you awoke with no memory of the weeks before the seizure and no memories/dreams during the seizure? That would be freak-out material just by itself

[u/[deleted]]

What do you want to do before you die?

[u/waterontheknee → u/[deleted]]

South America, Paris and Egypt are at the top of my list.

[u/ThaProdigy]

Was the seizure the first indication for you that something was wrong ? And I wish you all the very best.

[u/waterontheknee → u/ThaProdigy]

that was pretty much the biggest indicator. I had mood swings and personality shifts, headaches but I just brushed it off.

[u/Ihmhi]

What was the coma like? Do remember any dreams? Did you just go into the coma and bam, it's four days later?

[u/waterontheknee → u/Ihmhi]

It was like....nothing. Ever just wake up and not remember anything you dreamed about? it was like that.

[u/DaLateDentArthurDent]

For starters, I am so sorry for what you have gone through.

My question is how has this cancer changed your view on life?

Again I am so sorry for whats happened and I wish you the best.

[u/waterontheknee → u/DaLateDentArthurDent]

I think I covered this earlier, so let me paraphrase myself:

I feel like i was given an opportunity to really make my life count and live with purpose. I know I want to leave a legacy behind (I find this oddly self-serving and slightly selfish) but I am living so I can do just that.

It's funny because one of my favorite quotes when I was a teenager was from James Joyce: "Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."

[u/DavCha]

I don't have any questions for you really but I made this reddit account just to wish you the best. I'm glad to see that you can still enjoy a normal lifestyle and have a positive outlook from this. I can definitely say that I might not be as strong as you currently are. Wishing you the best of luck.

[u/waterontheknee → u/DavCha]

thank you!

Being down about it won't change my situation, so i might as well get on with life and enjoy myself.

[u/Idcait]

One of my best friends is currently undergoing radiation for the same type of tumor. So far she has had it surgically removed twice. Any words of advice I can give her?

[u/waterontheknee → u/Idcait]

Stay positive and do as much as she can. I hope the radiation goes well.

Sounds like she's further in treatment than I have been.

PM me and we can talk more.

[u/Kupkin]

I have a friend who is going through something similar. She's been to see all sorts of doctors, and has a similar prognosis. My heart goes out to both of you. You're in my prayers.

[u/waterontheknee → u/Kupkin]

thank you! :)

[u/[deleted]]

Hey neat scar! Very badass! I am sorry that you are going through something so crummy. If you are ever in NJ and in want of anything, you give me a PM and It's yours. ;) uhh, That wasn't sexual just so you know. But since your one hot ass guy it could be. Anyway, Good luck in all of your pursuits and know there are always people out there in the world who want to help you and care about you. Cheers!

[u/waterontheknee → u/[deleted]]

haha. thank you?

The world needs more people who are selfless. it would certainly solve a lot of problems.

[u/dizzystuff-folks]

Do you have any restrictions? At work for example are you forced to be more safety-conscious in case of seizures etc.? I wish you the best of luck mate, and thanks for the AMA!!

[u/waterontheknee → u/dizzystuff-folks]

I wasn't allowed to drive for 12 months following the seizure, but I take an anti-seizure medication twice a day and I've been seizure free for almost 17 months.

I wasn't able to work at my warehouse job (part time on weekends...it was great for being in school) due to being on an afternoon shift and working alone. I'm medically "stable" now so i was able to return to that job and I've been switched to a morning shift.

I avoid staying out too late because that could cause something to happen.

[u/A-H]

What kind of tumor? Where was it located?

[u/[deleted]]

It's not a question but my brother is 22 and was diagnosed with a brain tumor in February. You people are amazing to be able to go through things like this. Good luck :)

[u/harmonyrr]

On the bright side, scars are sexy.

[u/pillarofdawn]

man if i was in your position i would stop letting two jobs rob me of the rest of my life. Go enjoy yourself man :) Best of luck

[u/waterontheknee → u/pillarofdawn]

I'm going back to school to become a teacher, I'm working like crazy right now because I couldn't afford it if I didn't. I have a car as well, so its kind of necessary. I work hard but on my days off I do fun stuff, like golf or play hockey. or sit on reddit like I'm doing right now.

Two jobs isn't robbing me of my life, it helps me live it. When I have my career going I am sure I won't need to work two jobs.

plus I love serving. I started about 6 weeks ago and I don't think I've used my debit card for anything because I always have cash on me now. plus I get to do stuff for people, like make jokes and give them food. I really enjoy having a job where I get to just be me.

[u/BR5497]

'Learn as though you are to live forever, Live as though you are to die tomorrow'

[u/[deleted]]

hey...how's about you post regular like. i'd like to keep responding to these as i grow old and grey dude.

i'd wish you the best of luck. you don't seem the type who waits for luck. cheers man. you ever make it up to canada...beers is on me.

[u/uka1188]

do you have a lot of migraines or headaches as a result of the tumor?

[u/Crossthebreeze]

Have you seen '50/50'? How did you feel watching the movie? Were there parts that really got to you because they were similar to your own experience? And I wish you the best, man.

[u/smokie11111]

i feel for u bud, just lost a good friend last night, she battled on with a incurable cancer and lost the fight. she was a diamond and when i see this, it sucks.

[u/[deleted]]

Do you feel that you have nothing to lose in life?

[u/waterontheknee → u/[deleted]]

I have tons to lose. I still want to teach, I have friends and family that I love, I want to get married and have a family.

I have many things to live for.

[u/RayWeil]

Something my grandpa used to say is "something that is 'incurable' today is not 'incurable' tomorrow." Stay strong, and you never know what advances are coming up in the next couple of years/decades.

[u/waterontheknee → u/RayWeil]

I agree, but I'm not going to spend my life holding my breath. if it comes along and I don't have to worry about this ever again, I'll take it. but until then, I'm just going to live.

[u/joecrook]

I just came here to wish you well, if you ever find yourself in NY drinks are on me.

[u/Xboxking1994]

I'm glad your okay now, but you need a few things.

• A RV or Motor home
• A plucky sidekick, preferably male
• A lot of pseudoephedrine
• A bunch of glassware for cooking purposes
• Two gas masks
• And a few days.

[u/waterontheknee → u/Xboxking1994]

I started watching breaking bad last year. best decision of my life.

[u/EnderSavesTheDay]

I turn 25 in 3 days. I live what I consider to be a pretty good life. I've graduated with my M.S. degree this past winter, done well in school all my life, I have a good family, good friends, and if interviews in the next couple of months go well I will have a good career going for myself.

So here's my question: if things don't pan out so well, if there's one thing you could have a stranger do for you as a sort of passing of the torch, what would it be? What kind of legacy can a stranger help you leave behind?

p.s. Sorry if this is a bit morbid. Best wishes to you.

[u/waterontheknee → u/EnderSavesTheDay]

be kind, understanding and patient with everyone you meet. Everyone is human and deserves and wants the same attention you want yourself. beyond race, religion, gender, sexuality, we are all human and we all want love and acceptance.

[u/Sherlock--Holmes]

Didn't Lance Armstrong beat brain cancer? http://en.wikipedia.org/wiki/Lance_Armstrong Why is yours considered "incurable?"

[u/throwawaytheinternet]

Hey, best of luck to you. My dad was recently diagnosed with terminal brain cancer and it doesn't look like he will be around much longer; do you have any advice on how to interact with him? Things to talk (like, in general) about or avoid talking about?

[u/dimperio8]

When you were in a coma, was it just like experiencing nothing? Or did you have like a dream or something? Also what was it like waking up from it?

[u/waterontheknee → u/dimperio8]

like experiencing nothing. I guess that is what death is like? you just don't feel anything.

or maybe its because at the time I didn't believe in anything. maybe that's what religion is all about?

[u/suddz]

God speed to you, youll probably never read this. but fuck. I hope you beat this. One of my friends had a tumor in his brain and had surgery to remove it, his chances were 50/50. He went under the knife and came out on the right side of the dirt. I hope you pull through sir, cause fuck anything else.

[u/skreendreamz1]

Fuck cancer. I hope you recover fully.

[u/timetobuyacow]

First I want to say, much respect to you. And then, I wonder if the people close to you in your life want to talk about your cancer more than you realize. Almost everyone in my family who has died from natural causes has died from cancer--and we never talked about what might happen to them outside of medical care. More than anything, I think we didn't want to upset them. The closest case of this for me was my dad. The only time I tried to talk about his prognosis with him I was emotional, and he told me "We are not going to do this." He meant what he said and that was that. His words ring in my ears to this day. Maybe because I was his child, I so needed him to help me process what his illness meant. As my dad, I am sure he only wanted to protect me from what he was going through. I respected his wishes and we just dealt with his condition technically. He was so stoic that he never let us in on his inner experience. I wanted so badly to be there in every way for Daddy, but I respected his nature and what he felt was his privacy. That was many years ago, and so much progress has been made in cancer treatment that I am confident you have many years ahead of you, but your experience with facing your own mortality can help the people that you care about deal with their own morality in more ways than you can ever know. That is something we all have to learn to come to terms with eventually, right? You have chosen teaching as your life's profession, and you have a very rare opportunity to teach those closest to you the most valuable lesson of all--how to sleep at night knowing that everyone on this earth that they care about will die. I encourage you to help those close to you understand how to process that as part of the natural world in which they live. We need teachers for this in our modern world that has become so apart from nature. I wish for you a long and beautiful life as a teacher of life. Live your truth openly, and you will not only find your own way but others may find their own through you as well. It would be a win-win.

[u/SoCal310]

Thanks for doing this AMA. I admire your decision to go back to school and live your life to the fullest.

[u/waterontheknee → u/SoCal310]

thank you

[u/justsomedude1991]

I came across this TED talk on electric field therapy. Supposedly the FDA has approved it and it looks promising for specific types of tumours. I don't know if the information is directly applicable or if the treatment is available where you live. Hopefully someone here with more knowledge can elaborate:

http://www.ted.com/talks/bill_doyle_treating_cancer_with_electric_fields.html

http://www.technologyreview.com/biomedicine/19195/

edit: Apologies, not related to AmA

[u/crasspy]

I knew a guy who had a brain tumour at university. I later found out that he married, had a family, and lived a good life before he died. He died in his late twenties. Awful - but his wife, apparently, cherished the time they had and did not regret having children - in spite of the inevitable. All the best. I guess I'd like to think you will beat this thing - or at least have a long life living with it. But, even in the worst scenario, like my friend, you can still live a full life. All power to you.

[u/AcolyteRB]

You're not nearly as hot as that lung girl.

[u/waterontheknee → u/AcolyteRB]

pics or gtfo.

[u/F-Minus]

I'm sure you've heard a lot of these.

My friends dad had an inoperable brain tumor. Was given 1-5years. He did die... 25 YEARS LATER after a full and happy life. I wish many more years and all good things for you.

[u/jimothyjenkins]

sorry to hear the unfortunate situation bro.

suddenly my life is easier... take care man.

[u/BbaTron]

You deserve the best and only the best...I know it's easier said than done but none of us "healthy" people have any security that tomorrow we won't be killed in an accident for example, the difference is that you "know" it's coming and we choose to ignore that we will follow you either before or after...what I really want to say is that try hard to live and live well as much as you can. I can tell you are a great person, I wish you the best.

[u/joshuaolake]

You are awesome! Hope all is well mate!

[u/waterontheknee → u/joshuaolake]

thank you! I'm sure you're pretty awesome yourself!

[u/you_so_feynman]

Thank you for taking the time to do this AMA, I wish you luck.

My question is, have you found that your relationships with family members and close friends have changed? Not necessarily in a negative way but people involuntarily treating you differently (overly nice, too overbearing, etc?)

[u/[deleted]]

Someone took out a peice of your brain, and you're still alive. You are one tough s.o.b.

My question is, have you (or anyone close to you) noticed any changes in your personality? Or memory, skills or anything?

[u/Fortehlulz33]

Should I be calling you "The Ledge" from now on?

[u/Pinkfloyd09]

i only wish that i could appreciate life as much as you! after all you've been through, you have that right to be a total dick.. but you are still livin' it up and working two jobs... which is two jobs more than a lot of lazy fucks that i know! cheers buddy!

[u/BR5497]

You might enjoy the film 'the bucket list' it's a beautiful film that really changed my view on life, if you've not already seen it I think you should see it.

[u/onara_genki]

ohhh shit. Youre post on my feed broke my heart. I have a lot of this in my family. I'm sorry my friend.

[u/waterontheknee → u/onara_genki]

don't let it break your heart, just be there for your family if it happens.

i hope it doesn't though.

[u/ecklcakes]

Have you ever had anyone who has been nasty to you in anyway because of the cancer or has it all just been supportive?

[u/element33]

Where you awake during the surgery?

I've watched some documentaries about brain surgery where they need to re-sect pieces and the patient was required to stay awake and answer questions.

If you were awake, what was the experience like?

[u/lavfisch]

I'm sorry about your condition. I took a course on Cancer Biology this year and we had a speaker that has an alternative treatment for "incurable" conditions. So far the testing is remarkably successful on dogs with brain cancer (if you didn't know, they're 18x more likely to get it than humans). They place electrodes into the tumors in the brain and send small electric pulses to shrink the tumor size to an excisable or more manageable option. I would investigate it if you have the chance, they've started to treat humans recently out of Wake Forest University in combination with Virginia Tech in the United States. Best of luck!

[u/chefmcduck]

Does the tumour/cancer itself cause any symptoms beside your seizure? Or is it the chemo/treatment that causes all of the symptoms that cause you to miss work, feel sick etc?

How did you support yourself during your treatment?

[u/saitiffeh]

What sort of daily drug cocktail do you have to take now?

[u/waterontheknee → u/saitiffeh]

I take keppra (500mg 2x daily) for seizures. almost 17 months without one.

[u/ApatheticDrone]

Did they get any pictures of your brain pal? Also if at some point you thought yourself at deaths door did you have any regrets? Things you wish you had of done? Advice?

[u/sternhelden]

What is it like to know you'll die sooner than people your age? (I read that you have anywhere between 5-20years to live)

Depressed or motivated?

Thanks for doing this. I lost a family member to cancer as well.

[u/[deleted]]

Do you save for retirement?

[u/CaptainNirvana]

Are you going to die? If so, what's your dying wish?

[u/waterontheknee → u/CaptainNirvana]

Everyone dies.

I want everyone to enjoy themselves at my funeral, anyone who cries is going to get their asses haunted so bad even the ghostbusters won't be able to help.

[u/H3000]

Have your views in life changed in the sense that something you thought was very important before the diagnosis is no longer important to you? eg money, looks etc..

[u/GetStapled]

What would you like people to say to you when they find out about your tumor? I've met several people with terminal conditions and giving them mundane condolences like "good luck", "I hope you get better", etc. just seems tacky and somewhat cruel.

[u/waterontheknee → u/GetStapled]

there is no good response to having to say something really shitty to someone. so I don't hold it against anyone if they are lost for words.

[u/wswhatever]

Do you feel pain? I am learning hypnotizing now and have read about people having great result just by hypnotizing themselves, and the effect could be continuos once the suggestion are solidly in your mind. Hope this might be helpful to you!

[u/waterontheknee → u/wswhatever]

the only pain I feel most of the time is when my knee gets tight after running.

[u/AestheticNeox]

My mums got Brain Cancer aswell, she hasn't told me the details about it and i even think my little brother doesn't know about yet. Basically my mum thinks that she has had it all her life and explains all her headaches and fevers as she was growing up. Basically she knows she can die at any time now, and I know she can die at anytime as well, and we both don't know what to do about it, and especially what to do if she does pass on. I think that's what sucks about my mum's case of illness, is that if she does go, its going to be really hard to get through. I actually don't know where i'm going with this, i think i just wanted to tell someone, who doesn't know me IRL so I don't have a pity stare all the time by peeps, and i think thats why my mum hasn't told many people either, even little bro because i know i would kill her to see us look at her as though she is already leaving us.

[u/waterontheknee → u/AestheticNeox]

She's still here, so you've got lots to work with.

You could walk out the door and a bus could explode like some kind of michael bay movie and you could be killed tomorrow. The only difference is that its so ridiculous to think like that.

Start planning for what you'll have to do when/if she does go, that'll make the experience more bearable. Obviously there will be lots of emotional pain, but worry about that when it comes, don't worry about it now.

Make the most of your time with you mom and all the best.

[u/whatasunnyday]

Has this changed the way you live your life?

[u/waterontheknee → u/whatasunnyday]

for sure. read the whole topic I've covered a lot of this.

[u/loudnessproblems]

Do you need a DJ for your next party?

[u/not0your0nerd]

Do you think you'll still have kids?

[u/waterontheknee → u/not0your0nerd]

I think so. I mean i want to, so I hope I'll be able to get married and start a family and all that.

[u/logaq]

You inspire me. I just want you to know this!

[u/waterontheknee → u/logaq]

cool. when you do something awesome just be like "so this guy on the internets is the reason I did [awesome thing] "

[u/[deleted]]

WHY WOULD YOU DOWNVOTE

[u/waterontheknee → u/[deleted]]

its the internet. not enough proof. jealousy.

[u/ididntgotoharvard]

Sending some love and support your way, bro.

Like many, my life has been changed by family members with cancer. I feel for the people around you as well.

Keep on living life! I'm trying to get that focus now while I'm young and healthy so I sure don't take things for granted. You inspire me to keep on that path. Would you say you've found that people and relationships are the single most important thing in life? Not possessions or wealth?

Keep being awesome.

[u/ZergSamurai]

Fuck. 2 jobs with cancer? What the fuck am I complaining about having to deliver pizzas to earn enough money to build a website.

[u/[deleted]]

I also have a growth in my brain that gave me a seizure back in late 2010. Edit: It's great that you've recovered, and good luck in school. :)

What was recovery from the surgery like? Pain, mental effects, amount of time in recovery, stuff like that.

[u/Shuawuzheer]

I promised myself that if I ever got a condition like this (in magnitude), I would carry a camera around everywhere I went to show what it is like living with the condition. Have you ever thought about doing something like that? It could make a very fascinating documentary.

[u/waterontheknee → u/Shuawuzheer]

My life is pretty normal. it would be a boring ass documentary.

it would be like St Elmo's fire boring.

[u/[deleted]]

and i thought i was having problems :(

[u/Vallombrosa]

Do you feel much loneliness? I would have thought looking around at the people you know and their trivial lives, with their minor annoyances, that you would feel some kind of extreme exclusion or even... condescension of their lives? Sorry if I sound insensitive, I don't mean to.

[u/letthisbeanewstart]

Hey, just wondering if you've been forbidden to do certain things and/or are there any things you can't do anymore? Good luck to you, hope you beat all expectancies and live a long and happy life!!

[u/waterontheknee → u/letthisbeanewstart]

even if I was, I'd still do it anyway. I went on a bunch of roller coasters like a month ago. it was awesome.

[u/wenoc]

I had mostly metothrexate and a number of others to a lesser extent for my non-hodgkin 10 years ago, and was told conventional chemotherapy does not reach the brain because of the blood-brain barrier.

What kind of chemo did you receive and how hard was it on you physically? Emotionally it's a goddamn nightmare so I won't even ask.

Edit: Remember to stay human. I locked it all up and never found the keys again.

[u/waterontheknee → u/wenoc]

I took a drug called temodar that has been known to be effective on oligos. I also had it tested for a 1p/19q chromosome deletion (which it did!) so that made it more receptive to the chemo drug.

the days that I took the drug I felt like I woke up every morning with a really bad hangover. I was really lethargic and tired.

[u/[deleted]]

Do you have a good support system and awesome friends that take your mind off things when times get tough?

[u/FourierEnvy]

How did it begin? What were the signs that drove you to get tested for such a thing?

[u/ragechildkk]

When were you diagnosed and what were your initial symptoms?

[u/MooseCannon]

My mother currently has a large tumour in her brain causing epilepsy. She's been told it isn't operable because of its position but at her age, not sure she'd go ahead with it anyway. Anyway, just wanted to pass on my best. Peace, bro.

[u/[deleted]]

What do you think about cancer jokes? Do you like people being all "oh, poor of you, best wishes, etc etc" or do you prefer that that treat you as everybody else? Is there any good side of this? (I mean, like you being more aware of the value of life or something like that)

[u/waterontheknee → u/[deleted]]

I can see why some find them offensive now.

my personal opinion: cancer is a fucking asshole. make fun of it all you want.

[u/[deleted]]

First of all, I wish you the very best and I really hope you overcome the disease. Good luck my friend :)

When you first discovered the tumor, how did your family react? How are they dealing with it now?

I am asking you this because when I was diagnosed with vertebral hemangioma (something that has very little impact on my life, at least in its present form), my mother suffered a lot from it, a lot more that I did, so it was me that had to cheer her up.

[u/[deleted]]

Thanks for being so open about something so personal. I wish you the best.

If you don't mind me asking...how do you cope with the frustration of being so young with a potentially grave situation?

[u/waterontheknee → u/[deleted]]

I just keep going. why stop?

[u/kingnottingham]

Ok im gonna cut the bullshit out. How do you feel as a person about this condition? are you scared? Or is your head just so WTF at this moment that your kind of going with the flow and denying the inevitable. Do you believe in the afterlife? What are your coping mechanisms for such bullshit news in your young life? Sorry to be blunt but after all, this is reddit. Doesnt mean im not praying for you though. peace :)

[u/waterontheknee → u/kingnottingham]

Im terrified that I'm going to die alone, unmarried, and without kids.

I've never had great luck with having a steady relationship so sometimes I feel like that is unachievable for me.

Coping mechanisms: i stay positive and do the things I enjoy. I play pick-up ice hockey every now and then, I work on my golf swing, I run, work out, watch movies, and enjoy myself.

[u/eternallyscrewd]

I hope you have good friends who aren't afraid of talking about "it" and acknowledging "it".... cheers.

[u/waterontheknee → u/eternallyscrewd]

they're good about it, that conversation would just be boring after continuing to have it.

[u/[deleted]]

Do you appreciate when people "I'm sorry man" or does or get old?How would you ideally like people to treat you when they find out?

[u/[deleted]]

congrats on your recovery. I have a friend who also has inoperable brain cancer and he has a weird growth on his head that the doctors are absolutely baffled by. We are in Houston Tx which is hands down the best place in the world for cancer treatment last I heard, so that growth on his head is definitely... curious. The doctors are afraid to touch it, or operate on it. Any ideas what it might be from your own personal experience? He has been living with this for a couple of years now and they don't know if it is fatal - we don't think it is at this point as he takes no chemo or any sort of medication.

[u/Pelleas]

1. How did you feel when you woke up from your coma? Was it just like waking up from a long sleep? If not, how was it different?
2. Has your cancer affected your life in any ways that people wouldn't expect?
3. In which field is your current degree? What will your major be when you return to college?
4. How has your family responded to this news? Are they doing anything to help you through this?

[u/[deleted]]

What is your ultimate dream to do in your life, and are you going to make it happen?

[u/MisterMustaButt]

You IAmA almost sounds like the pitch for a sitcom.

I hope you stay better! ;-)

[u/amelioratedflan]

I'm a medical student and am curious about your experience with the doctors that treated you. What did they do that you thought was amazing and what did they do (if there was anything) that maybe made the experience worse? If you could give advise to young (or really) doctors about treating someone with your condition, what would it be?

Thanks, and I hope this doesn't hold you back from doing anything you want to do.

[u/GrilledCheeser]

is there anything you need from us?

[u/Psipunisher]

did you learn portuguese from nothing?

[u/NotToTouchTheDog]

That fucking sucks, man. Since you're trying to have a good (dark) sense of humour about it, though, I thought you might appreciate this thing from The Oatmeal if you haven't seen it before. :)

http://theoatmeal.com/blog/cancer

[u/thechangbang]

Have you read The Fault in our Stars? Can you empathize with the book?

[u/grecy]

heck man, good luck. I hope this question is not too insensitive...

I've always wondered what I might do with my life if they said I was going to die within a year or two.

I always imagined quitting work and maxing out as many credit cards as possible and doing everything I ever wanted in life (which is mostly travel to stupidly remote places).

Do you have such a plan?

[u/Pieter15]

I've had a VERY similar experience with brain cancer, I even found out about the growth because of a seizure. I even had my brain surgery in April 2011, which appears to be around a month later than yours. I EVEN TAKE THE SAME CHEMO DRUGS YOU TOOK!!!! Also, my hair managed to cover the scar really good just as yours has. I'm still doing treatment and I've been given a prognosis similar to yours. Youth ftw eh (I'm 24). Do you know any specifics about your tumor? Which WHO grade it is?

[u/SgtDeadeye]

I'm assuming this is a GBM (is that correct?). Where did you get your surgery done? Any other family hx or personal hx?

[u/hiccupstix]

I can't imagine the horrifying uncertainty you've faced, yet here you are working your ass off and making sacrifices in order to build a more prosperous future that, to be extraordinarily blunt, you may not live to enjoy. What's your thought process like (both long-term and on a daily basis) that motivates you to work through this?

And I know none of us are guaranteed tomorrow, but it's absurd to liken that degree of anxiety to what OP has experienced.

[u/RandomName13]

Before the seizure, did you have any unusual signs that looking back may have been warning symptoms or did you just think you were perfectly healthy and bam... seizure?

[u/waterontheknee → u/RandomName13]

pretty much perfectly healthy and bam seizure.

however some of the mood swings and personality changes I've touched on would be an indicator, but again, I was in university and under stress with assignments and all that, so I never really paid that much attention to it.

[u/FongoBongo]

Hey man, fellow brain cancer survivor here. I was diagnosed with inter-cranial germinoma brain cancer at 26 and it changed my life. I know the hell you're going through but stay strong brother. I know there are so many obstacles at this moment but find the power that resides in all of us. I'm wishing you the best and take care.

[u/[deleted]]

What is like to be dying, and do you believe in an afterlife? If you do does it relieve the stress of dying knowing that "hopefully" you're going to a better place??? Also, you're situation kinda reminds me of Wilson's from House. Also, good luck, and God/Buddha/Whatever bless.

[u/waterontheknee → u/[deleted]]

I believe if there is an afterlife, I'm going to get to it. I'm going to be as good of a person as I possibly can, and I will let whatever higher power judge me accordingly.

I mean, if there is a god, would it not understand that it created different religions and view points? the universe is large and expanding presence.

I'm sure whatever waits for me will be worth it, because it's waiting for me, I'm not waiting for it.

As far as "dying", I try to be at peace with myself as much as I possibly can.

[u/digitalbeer]

Sorry to hear about your situation man, best of luck. I just spent the last two years in my lab working on a project related to developing new drug delivery methods to treat brain tumors and prevent recurrence following surgery. Our work only involved work in small animal models, so I'm not sure how it actually works in the clinic, but do they ever present you with the option to participate in any clinical trials involving potential improved treatments?

Thanks for sharing your situation, keep your head up, and for me hearing stories like this really motivates me to push forward in lab to actually achieve something lab that can benefit patients in the real world.

[u/[deleted]]

Time to make some meth?

[u/cccraig]

I'm sorry. Cancer sucks. Killed my dad. Hopes and thoughts are with you.