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MedicalI am a 26 year old father with brain cancer. - AMA!

Apr 27th 2017 by mishaamerika • 16 Questions • 94 Points

I am a 26 year old father that has brain cancer. I had a tangerine-sized grade II oligoastrocytoma tumor removed 14 months ago from my right-frontal lobe. I completed one month of radiation treatment, and took the oral chemotherapy drug Temodar on a cycle for 5 months. Since January 1st, I have completed all of my treatments, and I will continue to get regular MRIs every 6 months - AMA!

PROOF: 1) Here is me about to get radiated.. http://imgur.com/gsz5XdC

2) Me with my hair mostly gone after radiated.. https://imgur.com/a/4yuk0 (at the MN Medical Cannabis dispensary LeafLine)

3) My 5K Run/Walk Sponsorship fundraiser for Brain Tumors research link: https://www.wizathon.com/walktoendbraintumors-mn/?p=display&action=participant_Page&id=39046 )))))))))))))! (PS Feel free to donate money to brain cancer research here, ::wink::)

Let's do this! EDIT SOME MORE PHOTOS

One of first MRI post-op I saw(It got worse in other ones, but obv this still looks bad): http://imgur.com/a/Y98Yk

angle 2: http://imgur.com/a/QQYuy

My radiation mask: http://imgur.com/a/Q8kBG

MY SKULL STAPLED SHUT(Somewhat graphic, beware): http://imgur.com/a/3THl4

Q:

Hey dude , how are you? I just wish you good luck and that everything works out for you and your family.

A:

Thanks) Well, now I am much better than the first 12 months. I saw very minimal cognitive improvement initially, and only started to get significantly better after I stopped taking Trazodone. I would feel like shit everyday. I couldn't do basic things like make a salad of breakfast, so my wife pretty much had to take care of me and our daughter at the same time. I couldn't focus very much at all. Couldn't drive for several months. Went to parks a lot. It was a very very long recovery, at least from my perspective. But things I feel are genuinely getting better now: I have much less physical pain/uncomfort and my mental condition has improved noticeably :) Thanks :)


Q:

Yes, please.

A:

http://imgur.com/a/3THl4 :O I also have some crazy MRI shots around I can try to dig up where it looks like HUGE part of brain is missing


Q:

So what does "completed treatment" mean as far as your condition goes? Are you on the mend?

What was the worst case scenario your doctors gave you at the start? Life expectancy?

A:

Completed treatment meaning, for the time being until we see any "excitation", I will not be taking chemotherapy or be doing radiation. The problem is, usually younger people respond better to the treatment, but because they are younger, they therefore have a higher likelihood of having it return as younger people live longer, obviously.

The doctors have no idea. Last I talked to my radiation oncologist he said (and I should've clarified if he meant life expectancy or if/when it returns) 5-15 years. These two numbers have put me in a lot of confusion..


Q:

What are the biggest changes in your lifestyle for future planning? For you and your family. Do you feel you need to sell crystal meth like walter white from breaking bad to guarantee your family will manage? This is just an example mind you, but are there drastic changes you've made since being diagnosed?

A:

Biggest change I would say would be mid-long term planing. The hardest question we are facing with right now is if we should have another child. We have to ask the hard questions like if it's a good idea due to my health.

I suppose my short-term planning has changed more than my long-term planning. I try not to plan much more than a year ahead, but focus much more on the current day and the now. Sounds cliche. Yuup.. :)


Q:

Do your children have a higher risk of brain cancer? Also, I watched Gattica last night, I liked that movie growing up. It isn't really relevant but if you could genetically alter your childs genes to not have the illnesses and complications that we all can have, would you do it?

A:

I have asked this with my oncologists and I have not gotten a firm answer. I think they don't know, but in general, - no. We did preserve some before chemotherapy and this can be an option. We have still been told to wait at least 6 months post stopping chemo to avoid risks. I have been told that chemotherapy can affect your fertility, so this is generally more the issue I believe.


Q:

Well, I would say don't let this stop you from having more children. 5 years or 15, possibility of your children having cancer or not. Sometimes we get dealt a rotten hand, but that still has a chance. As long as you're in the game, there's no telling what the outcome will be. Your brain may be buggered but your heart is golden. Stay strong.

A:

Thanks )


Q:

Thanks for doing this AMA and the best of luck.

Did you notice any changes to your personality or moods after being diagnosed and after the various treatments you had?

A:

Well, I was severely depressed for probably 8 months at least. I have become more direct and serious, I have noticed this. I think I have always been a kind person but I self-evaluate myself even more now due to the situation. I feel sometimes as if I am given too many "discounts", if this makes sense.


Q:

How has your outlook on life changed? I mean I would just give up and be sullen, but you look pretty happy in that photo. Also how has it affected you physically?

A:

I truly do live in the moment now. I was close enough to death that I see it much more clearly than most 26 year olds. I did pretty much give up during the hospital (I attempted to kill myself in the hospital), because my cognition was so terrible. Physically... well... I have been taking stool softeners and laxatives for almost a year and a half? Physically in general I am weaker, but I can still do most of what I did before :).


Q:

Whats your Biggest goal in life/ Bucket list?

A:

I mean.... single goal? Pretty hard. Hm.. my daughter graduate? Marry? Her kids? Ok I'll just name some. Go to Vegas. Saint Petersburg. Go to an European ITG2 tournament. Be successful (this last one is boring, sorry) :)


Q:

Are you creating some sort of documentation of your experience. Journal, videos, voice recording, etc.?

A:

Not really. I'm sure everything that happened in the hospital is still logged, that was an extremely intensely horrifying experience. 22 days of... torture it seemed.

I did bitch a lot about my physical symptoms and mental symptoms to many people over facebook, so that's actually where I go when I want to look for timestamps of when things happened and how I was feeling at the time (I was rather obsessively suicidal for at least 8 months) :|


Q:

Understandable, though I'd like to suggest you perhaps consider taking the time to either write, or create a video recording of your thoughts and in a way speaking to your children in case something were to turn for the worse. It may also be quite cathartic along with creating something of personal value for your family should you pass. I think it's a good form of art therapy as well to combat depression and suicidal thoughts, a way to express. You can say how you feel and really anything you need to say from that intense experience.

A:

Pretty soon after I got out of the hospital I bought a 64GB iPhone 6 and we have made hundreds of videos of us with our daughter. This is our log for us and our daughter, essentially. She loves to rewatch them :))


Q:

Why were you not sleeping for such long periods of time?

A:

Researching random shit on the internet, video games, trying to learn/speak Russian, I get involved in things obsessively and can't sleep if I don't feel that I have had enough completion or "closure of thought".


Q:

I saw a comment asking about radiation and that mask that they make out of vax. Don't you feel claustrophobic/get scared when your head isn't able to move? I mean I would freak out.

Edit: Do you enjoy winter sports? Like snowboarding or skiing.

A:

There is a very very small mm that your head is able to move, and it latches down pretty good. The whole procedure is pretty short, so the whole time I am just thinking about my stillness.


Q:

Thanks for answering!

A:

One of first MRI post-op I saw(It got worse in other ones, but obv this still looks bad): http://imgur.com/a/Y98Yk

angle 2: http://imgur.com/a/QQYuy

My radiation mask: http://imgur.com/a/Q8kBG

My staples (Somewhat graphic, beware): http://imgur.com/a/3THl4


Q:

Might have been answered already, what symptom made you go to the hospital? When did you notice something was wrong?

A:

I was essentially having seizures when trying to go to bed.


Q:

Have you ever thought about medical marijuana?

A:

Yes, I am on the MN cannabis program, and also smoke plant pretty much daily. It helps immensely.