IAmA 25 year old who is living with incurable brain cancer
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
It's that kind of humor i really appreciate. I just had a pretty good chuckle about that.
Thank for the support though.
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.
that sounds pretty good.
Wait, what are we talking about?
[–]opossumfink 24 points 34 minutes ago 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.
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. ;-)
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).
no i agree. I like being treated normally.
just because I have cancer doesn't mean the world suddenly owes me everything.
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.
thank you! It is much appreciated.
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.
I'm a little self concious about it, so I've been keeping my hair longish.
I wouldn't worry about it, just tell people the usual answer:
"You should see what the other guy looks like!"
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.
GIRLS ON THE INTERNET?
Why would you be self conscious about it? girls LOVE battle wounds. I have some massive scars on my body. The most prominent being on my shoulder. Usually when we are playing that game "What do you love about me" the scars are on the top of the list.
I'm still not 100% comfortable talking about it IRL.
Is it terminal or just a thing that hangs out in your head?
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.
What happens at that point?
Treatment, but more aggressive. radiation, more chemo, possibly another surgery.
I'm sorry to hear that. My mom is on the tail end of battling breast cancer. What is your expected life expectancy? Awesome scar though!!! I bet you can pull some ladies with it :)
life expectancy varies. Being young and having a good reaction to the treatment I could have anywhere from 5-20 years. i met a guy who is a 19 year survivor and he had just started his temodar treatments. I guess I am kind of approaching this with the attitude of "if I make it to 40 I'm going to be the happiest 40 year old ever"!
The scar actually is barely noticable now. My hair has grown in and I haven't cut it short in over a year. You can't even tell I had my head cut open (unless you feel the area where they went in. there is a slight depression on the left side of my skull above my left eye/forehead).
All the best to your mom for her battle. There has been loads of advancements in breast cancer treatment so I hope it goes well!
I am reminded of a quote by one of the Gods of Reddit, "Everybody dies, Tracey. Somebody's carrying a bullet for you right now and doesn't even know it. The trick is to die of old age before it finds you."
I wish everyone had your kind of optimism. Stay strong, hang tight and, more importantly, live.
I'd rather die an optimist than live in misery.
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?
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.
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.
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.
Sounds like you're making the best out of it. I don't even know you, and I feel proud!
Any cool side effects?
Can you move things by thinking it?
How has this changed your view on things? Nothing specific, just in general.
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.
Your new perspective is very much like the ones of Buddhists. I hope that your path will be long, happy and prosperous.
thank you. I've always been kind of fond of buddhism.
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.
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.
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?
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.
Well played. Best of luck to you.
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.
Best of luck brother.
I got lucky and didn't have an IV Cocktail, which from what I've read and heard from others, is like having glass shoved through your veins.
My advice is to just be as supportive as you can and take every day as it comes. some days are really crappy, some days can be great. bad moments in life pass so don't let them linger, focus on the positive.
I feel like a cliche machine right now.
Best of luck!
Are you in any kind of physical pain?
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.
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!
you're a surgery ahead of me. you're the one that's awesome.
For those who thought medical marijuana would help, it wouldn't.
Source: Im a molecular biologist.
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.
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.
So have the symptoms of anxiety, depression, mood swings etc kind of been alleviated by the treatment, or are they still lingering?
Every so often I'll have a mini-anxiety attack, or feel overwhelmed and get flustered and want to just walk right out of the situation I'm in. Mother's day at the restaurant I work at was like that, very busy, and it got so confusing. I got a bit flustered, took 5 minutes to myself and got back out there.
depression lingers when I think "oh I have brain cancer and don't have a serious girlfriend! i'm going to die alone" and then I realize that I'm only 25 and don't have my career going yet, so really.....why am I worrying about something that I'm not even ready for yet?
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?
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.
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.
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.
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
cancer-solidarity e-hug <3
Have you start believing in supernatural things you hadn't believed before? Like God, of any kind of afterlife?
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.
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...
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.
I really wish you the best man, you seem like such a lovely guy. No question; i just think you're great.
I think you're great
Did you dream in your coma?
I don't remember anything about the coma.
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.
awesome. Thanks man
What do you want to do before you die?
South America, Paris and Egypt are at the top of my list.
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!
haha. thank you?
The world needs more people who are selfless. it would certainly solve a lot of problems.
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?
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).
how did you feel about the guy who faked brain cancer for attention/money on reddit a few months ago?
but seriously: some people are just dicks and nothing bad will ever happen to them. It's a very unfortunate fact of life.
Karma will catch up, it always does.
Was the seizure the first indication for you that something was wrong ? And I wish you all the very best.
that was pretty much the biggest indicator. I had mood swings and personality shifts, headaches but I just brushed it off.
What was the coma like? Do remember any dreams? Did you just go into the coma and bam, it's four days later?
It was like....nothing. Ever just wake up and not remember anything you dreamed about? it was like that.
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.
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."
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?
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.
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.
thank you! :)
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.
Being down about it won't change my situation, so i might as well get on with life and enjoy myself.
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!!
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.
I had an MRI and they found a growth/spot on my brain while I was in the coma. They had to do a biopsy to figure what it was, but because my tumor was in a good location for surgery, they figured they might as well go in and take out as much as they possibly could because it shouldn't have been there in the first place. they later comfirmed what it was.
and it was pretty much like that. i went to bed one night, the next time i woke up I was in the hospital 4 days, almost 5 days later.
There are so many things that could go wrong with your brain, I would suggest maybe going in and getting some opinions on it.
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
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.
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.
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.
Do you feel that you have nothing to lose in life?
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.
Do you have a job that provides benefits? I can imagine your treatments are quite costly, especially if there are travel fees involved (unless you already live by a decent cancer treatment center).
How do you feel about ObamaCare?
I don't live in the US, but socialized medicare should be standard in every country in the world. Human life shouldn't have a dollar cost associated with it. It's a selfish way to live if you think you shouldn't pay for other people's welfare through taxes. I would hate to get sick and not be able to afford it.
not working sucked, and money was super tight. I come from a lower middle-class family, we don't have a lot of money, but we never went without anything.
Obama care is a step in the right direction. Look at Britain though, as conservative as they can be, any politician over there would be an idiot to make cuts to the NHS (National Health Service)
Living in Canada makes me so happy.
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.
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