Apr 26th 2017 by mishaamerika • 7 Questions • 70 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!
How did you feel the first time they confirmed you had brain cancer?
Lied to. Confused. Empty. At the beginning, they stressed that I had a "non-cancerous" "benign" tumor. Many months after surgery I remember having conversations with my oncologists with each of them clearly stating: "You have brain cancer. Period. End of story." Originally they were a bit vague and beat around the bush with the big C word until I really started to ask questions.
This freaks me out. I had a doctor tell me they wouldn't cut me open for a cyst because they're sure it's not cancer, but there's no way to test without surgically removing, so I just trusted their word and I'm figuring i'm not part of the 2%.
In the beginning did you feel like they might be wrong about the benign diagnosis or did you just accept and trust their word?
I mean, regardless: benign tumors grow and cancerous tumors grow. It was the size of a tangerine, and as it grows it would've started to push on my motor functioning, so either way, it was necessary to remove.
Understood. If it's not too much to ask, can you still answer - did you ever question the initial diagnosis? Or did you simply not have time to (too much happening too quickly, overwhelming enough as it was)
Well I an MRI done and they found an abnormal brain scan, and they found a large mass of "bad-tissue". While we didn't know what type it was, due to the location and size, it needed to be removed. The actual type of tumor cells would only later be determined by the pathologist.
Has the tumor affected your cognitive function and if so, how?
It has GREATLY affected my cognition. As some of us may know, our frontal lobe is primarily used for executive functioning skills like problem solving, planning, organizing and making decisions.
When I came out of the hospital I was severely impaired cognitively. I could have all of the ingredients for a salad laid out in front of me including the salad bowl ingredients and knife, and I would be very slow and practically unable to make a salad due to the amount of choices it took. How many tomatoes? Onions? I couldn't do it. I couldn't make coffee from a drip-coffee machine. I mean, I could, but it was impossibly and frustratingly difficult. I couldn't understand basic children's movies like Finding Nemo. I would get utterly confused where I was, what I was doing places, why I was there, and felt completely out of it.
I would say it took around maybe 10 months to start to really see what I would call noticeable improvements. Presently I am back doing what I did before: troubleshooting/maintaining computers/servers etc. I was on a huge cocktail of drugs and have slowly weaned off of most of them except my anti-epileptic drug.
That must have been really frustrating, to say the least. I'm glad you're doing well now, that's really awesome :)
Thanks :) I don't like to get too ahead of myself when I think that I am doing much better, because in the past, it was usually only for a brief period of time. This time I think I am much better and won't bounce back. Let's all hope, right :)?
What symptoms made you go to the doctor? And, what are the best ways to support someone who may be going through something similar?
Thank you! I wish you the best of luck.
After staying awake lengthy periods of time, when trying to fall asleep my body would feel this almost electric shock throughout the body, which always put me standing and in panic. I got an EEG test but they did not detect seizure activity so nothing was thought of it. We postponed the MRI for probably 6 months. I began to start feeling pretty nausea in the morning and in general, but attributed it to other things like quitting smoking and studying at a university.
My wife advised me to get the MRI, so eventually we did. The next day when I was on-site fixing a modem, I got a call from the epilepsy group that they needed to see me that afternoon. We then scheduled the surgery for about two weeks later. Those were very long weeks.
I would say the best way to support a friend going through something like this is by being as patient, supportive, and tolerant as you can be :).
Hi, thank you for sharing your story.
Before your diagnosis, did you partake in any vices? Have you given them up?
Before my diagnosis I used to smoke a lot of cigarettes and weed, and now I only smoke weed. So yes.