Exactly at this moment a year ago, I was placed in an ER room after the PA informed me what the CT scan revealed. Still feels surreal.
It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
John's Discussions
Radiation Therapy Mask
4 Replies
Here's my mask that was made today for radiation therapy. Final preparations are being made as the scans (MRI and CT simulation) needed are now both taken care of. Therapy should start in a week or…Continue
Started this discussion. Last reply by John Nov 19, 2011.
What to do while waiting for surgery?
3 Replies
So after meeting with the the various doctors at UCLA, I've decided to go ahead and have the open biopsy. It is scheduled for August 4 so will come up pretty soon. In the meantime, there are various…Continue
Started this discussion. Last reply by Todd Koonce Jul 30, 2011.
Did I have a seizure?
4 Replies
I am not sure if I had a mini seizure this afternoon. I was at work walking down the hallway and all of a sudden I began to feel lightheaded and lost my balance just for a split moment. I got to my…Continue
Started this discussion. Last reply by John Jun 4, 2011.
John's Page
Latest Activity
John commented on maria toscano's blog post 'thoughts on aphasia and existentialism'
You're right, we are in a way forced to deal with our own mortality and question existence in general in ways that others don't. The glass menagerie that is the concept of functional denial gets shattered and we're left picking…
John commented on maria toscano's blog post 'thoughts on aphasia and existentialism'
Interesting that you bring up the topic of existentialism. Since being diagnosed last year, I've been going through what feels like an existential exercise (i.e., what am I doing here, why am I here, what is this place, how do I exist or rather…
John commented on maria toscano's blog post 'some additional info.'
I'll be crossing my fingers for you as well.
John left a comment for sheila taney
I'll be thinking of you tomorrow Sheila. I'm sure you know already, but don't be afraid to ask all the questions you have.
MRI shows slight tumor shrinkage! However, increasing my Keppra dosage to 3000 mg because of the breakthroughs that are still occuring.
Status posted by John
John left a comment for sandra armstrong
Really? Couldn't tell... :) Welcome
John replied to Beth Rosenthal's discussion 'IJB Get Healthy 2012 Challenge'
Great to hear Beth. Keep it up!
Profile Information
- Who are you?
- Survivor
- What type of tumor do/did you have?
- Grade II oligoastrocytoma in the right medial temporal parietal lobe and basal ganglia of the corpus callosum.
- What kind of info do you want from this site?
- Support, treatment options, recovery, reading other people's experiences...
- What state or country are you located in?
- California
- How did you find itsjustbenign.org? Please be as specific as possible.
- web search
John's Blog
10/17 MRI and Meeting Follow-up
So today’s MRI indicates that my tumor is stable. I guess this basically means little to no growth. I am really relieved, however, in meeting with my neuro-onco, I have decided to start with radiation therapy as soon as possible. I had been given a choice of a high dose chemo treatment (first week of every month for the next 1 to 2 years), radiation therapy, or wait and watch. I realize there's still a very long road ahead. Of course open biopsy had only removed what tumor tissue that could…
ContinuePosted on October 18, 2011 at 12:35am — 6 Comments
UCLA
So last Wednesday, I had my first meeting with UCLA. I met with a Dr. Pleninger from the neurology department. We went over my scans and she spent time explaining to me what we were looking at and things she was looking out for. She first focused on my "splenium" lesion. She said that based on my history, my EEG, and what she saw on the MRI scans, that the lesion is nothing more than a random spot in my brain and that it's most likely nothing more. She said that my case doesn't fit with…
ContinuePosted on June 21, 2011 at 3:30pm
post-biopsy follow up
In April, I had my first follow-up MRI. Unfortunately, I had to go with another neurosurgeon as I found out that my original neurosurgeon is not within my insurance provider network. The first neurologist I ended up seeing to get the results of my follow-up MRI to see if anything's changed did not work out unfortunately. So I made an appointment to see another neurosurgeon whom I met last week. For this first follow-up the best news would be that the temporal-parietal lesion has not grown…
ContinuePosted on May 30, 2011 at 1:40am — 6 Comments
my story
Hi, my name is John. Back in February of this year (2011), I had a bad case of the stomach flu of all things that started on a Tuesday. It was bad, but the symptoms I felt were rather typical (body aches, headache, and of course diarrhea). However after the second day, my headaches went from run-of-the-mill to as if lightning bolts were going off in my head. I ended up first seeing my family physician and eventually went to the ER that Friday when my headaches didn't dissipate even after my…
ContinuePosted on May 30, 2011 at 12:45am
Comment Wall (9 comments)
- At 3:42pm on February 21, 2012,
Becky said… How are things going?
- At 11:32pm on February 14, 2012,
Amanda said…
- Hi John! Congrats on your tumor-versary! Do something (even if it's something small/silly) to celebrate you!!!!!
- At 4:49pm on February 5, 2012,
Ann Manzi said…
Hey John, Love seeing your mask of courage and you got something I didn't; a diploma......I just left the room ringing the bell for the end to this lag of the journey. Wishing you the very best and keep in touch.ann manzi
- At 6:39pm on August 3, 2011,
Amanda said…
- Hi John! I will keep you in my prayers tomorrow! Hope everything goes well! Keep us posted! I know I say this to everyone but remember that you are stronger and more resilient than you even know!
- At 1:55pm on June 16, 2011,
Becky said…
- How was UCLA?
- At 2:54pm on June 4, 2011,
Becky said…
It's not really sore all of the time. Sometimes I can feel some pain, though. I wonder if the weather has anything to do with it. When I'm cold, I tend to tense up, so I think it just irks the muscle and healing nerves a little bit.
I don't think it was so much the biopsy that was hard, but the area being biopsied. My BT is in my thalamus, which deals with sensation and tons of other stuff. After the biopsy, I couldn't feel part of my right leg from the knee down. That eventually went away though, pretty quickly, too. By the time I was discharged, all I couldn't feel was part of my foot. I thought it was really interesting because it showed how the brain really does control the other side of the body; surgery on left side, lost feeling on the right. As much as this whole process has been scary, I've really taken a liking to neuroscience and the brain. I find it all very fascinating.
- At 12:43am on June 3, 2011,
Becky said…
I had a stereotactic frameless biopsy. It was image-based. I had an MRI beforehand with these "fruit loop" stickers on my head/face and then they used those stickers to line up everything, so they kind of had a map. The bone that was drilled out now has a titanium plate covering. Is that the kind of biopsy you had?
I still have soreness. It's on the left side of my head. The whole area was numb for a long time, I can only now feel everything a year later. The part where the nerves were healing was so annoying because it would get itchy, but the nerves couldn't detect that I was itching it!
Have you started any medicines after surgery that could cause those side effects? Like for seizures? I have some short-term memory issues, but I think my seizure medicine can cause problems with that.
- At 5:49pm on June 2, 2011,
Becky said…
- From what I've seen from your posts, you had your biopsy sometime in Feb, right? It took me a long time to recover, too. I had mine in May of 2010. I had a very hard time with stairs afterwards. Didn't start using stairs "normally" until almost 4 months after the surgery. But by that point, I had been on chemo for 3 1/2 months, so stairs were too tiring to deal with. I'm still recovering, though I think mostly from chemo now and not so much the surgery anymore. What effects are you seeing from after your biopsy?
- At 11:17am on May 28, 2011,
Beth Rosenthal said… - Hello John and thanks for joining. I started this site because I had such difficulty finding benign brain tumor survivors, like myself. I'm a long term survivor (but have many side-effects): diagnosed in 1985 at age 11. Besides connecting with survivors, we can exchange medical info, get support, etc. There is a Q & A with a neurosurgeon and a nutritionist under the Resources tab. Also there are many different groups such as religious discussions, migraines, seizures, depression and anxiety, etc. It's Just Benign now has its own store. All proceeds help maintain this website. So if you shop online, please shop through our "store" tab link. There are over 20 stores. Thanks again for joining. Feel free to contact me with any questions or concerns.
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