From one Brain Tumor patient to another...

Rest in Peace Senator Kennedy

May your next journey take you to a place where there is no longer pain, where you are bathed in love and become one with everything.

*****

All is good in my part, no known symptoms. Going to see if I can change the date of my next MRI so that it is moved up a couple of weeks, during my Spring Break rather than during a work day.

It's been over a month since my last update. All is well. School's out for summer!

We returned from a fantastic trip to Washington, DC last week. It was my first time. Yes, we went to the Holocaust Museum. No, we were not there when the horrible shooting happened.

One thing that is of interest to this blog is this picture from the Museum of Natural History:
( Read more... )

It's a picture of a skull that underwent a craniotomy. Not for a brain tumor though. The skull flap and structures that hold it together are similar in theory to the ones in my head.

*****

In other news, my wife's aunt, has been undergoing some neurological issues. I'm not entirely sure what the diagnosi are, but she just underwent brain surgery and is doing well. Thank goodness what a relief. We were worried and of course there are still some questions.

My 8th MRI in 3 years has shown no change since last year. This is a relief since I had been very worried about regrowth.

My original MRI appointment was changed to this morning. The MRI went smoothly although I realized how crappy radio is in the morning. I should have picked NPR, but I picked whatever music station just happened to come to my mind when they asked. Out of the maybe 45 minutes I was in the tube, I think I only listened to about 5 songs. The rest was commercials and the DJ's talking. The best song was the new Kelly Clarkson one which actually went to the beat of the MRI machine.

The feeling I have is that of relief, but also I feel like I've been gifted another year of life. Like I won't have to worry again until next Spring.

There is so much I wanted to do this coming summer and fall, that treating a tumor would have thrown a big wrench into our plans. This June, Sara and I are going to Washington, DC. It will be my first time. This July, I'm going to a Harry Potter Convention in San Francisco. In September we're going to a friend's wedding in Chicago. In November I'm going to a Wizard Rock festival thing in Missouri.

April 6th is coming up and that will be my 3rd anniversary of brain surgery.

On April 7th I'll have my next MRI at Creighton.

On April 8th, I'll spend the day pacing back and forth wearing a worry groove into the hardwood floors.

On April 9th, I'll have an appointment with a neurosurgeon to look at the results of my MRI.

I'm worried because I've been more aware of errors in coordination and minor headaches. It's not that they've been increasing, just that I notice them more and think, "Oh no it's growing back!"

Sorry for no January update, but rest assured, things are pretty good.

The neurologist I met with in December said that I didn't need to see an neuro-oncologist at this point. I could, but the neuro-onc at Creighton wouldn't recommend any new treatments for me.

Sometimes though I worry that Dubya is growing back. Like the other day I tried to put two contact lenses in one eye by accident. It turns out that you CAN put two contact lenses on one eye, but you won't see very well out of either eye. *L* I also left the coffee maker on a few weeks ago. No disasters, but I did end up buying a new coffee maker with an auto-shut off feature for a completely different reason. I also sometimes worry because of things like my handwriting where I'll write my signature slightly differently, or when I'm typing I notice more typos, or I'll walk into a room with a purpose but forget what it was.

These are probably normal "brain farts" that happen when you are closer to 40 than 30. Still though for someone surviving a brain tumor, it can be scary.

Next MRI scan in April.

In other news, as a lot of you know our beloved Dollie passed away last December. We have yet to get another dog to keep Stella company. It's been hard because we have very specific requirements, but patience will always make things better.

The school year has been okay. This group of students have tested my patience and have made it more work than fun. But that's why I get paid so much as a teacher and have such awesome benefits. *L*

Sara's business at http://www.mantofev.com is going well. She got a fancy brand new computer. Just when you thought your computer was fast enough, they come out with a faster one. It's so fast that it does everything before Sara even knows she wants to do something.

Our house still doesn't have a new roof. The wind/hail storm in June caused hail damage and our insurance company approved a new roof for us. However everyone else in the midwest needed a new roof too so the shingles we wanted weren't there. So we'll have to wait for spring. Lucikly for us, there haven't been any known leaks or further damage. *knock on wood*

This summer we are hoping to go to Washington DC and I'm hoping to go to San Francisco to a Harry Potter convention.

Happy Holidays Everyone!

Had a routine neurology appointment today. Nothing unusual to report. I was concerned that the new neurologist would want me to do another sleeping EEG to see if I should restart taking Keppra. However I was given the blessing to continue being Keppra free.

I will also call her next week to see what she thinks about seeing a neuro-oncologist given that I've never actually seen one.

Yes, I've actually SEEN an neuro-oncologist because my vision is fine. Just not had an appointment with one.

*****

In other brain tumor news. Congratulations to Arianna who had a successful second surgery. I hope that she continues to recover and have a long and thriving survival phase.

Another November has come and almost gone.

On the 15th, there was a Brain Tumor Conference here in Omaha. I attended the morning session and learned some new things. With knowledge comes hope, but it also sometimes brings worry. I learned at that meeting that my brain tumor support group lost one of its regular members. It was a sad reminder that there is no real cure for what we have, it's a lifelong battle.

The Conference brought up some questions and doubts about my own treatment. There's division among researchers as to how to best treat my type of tumor after surgery. After my surgery there was still 10-20% of the tumor which we are watching. There's the approach that says, "Attack it with radiation and/or chemo." With the argument that that remaining tumor is a timebomb just waiting to regrow.

However we went with the wait and see approach with the two fold argument that attacking it with radiation or chemo may do more damage to my brain that having it just sit there dormant. Plus there's the concept of de-differentiation where if you use radiation or chemo you may even cause it to regrow in a more aggressive or deadly form. And no matter what you attack it with, our medicine and technology won't be able to get 100% of it because there will still be microscopic cells all over the place.

So I sit here often wondering if I should be doing something more.

On the 20th, I turned 36. It was a great birthday. My wife took me to have some sushi and then I went and saw the Whomping Willows. Later that weekend I went to Ames to enjoy more wizard rock.

We had a different but special Thanksgiving. We went to have supper at my mother-in-law's and then later dessert at my wife's aunt's house in Council Bluffs.

I've been off of Keppra for just over 3 weeks now and I feel fine.

There was nothing really wrong with Keppra. No known side effects for me, not that expensive, convienient...

However there wasn't enough evidence for me to think I still needed to take it. Plus, although not expensive, it was still 40 dollars a month I could spend on other things.

*****

Tommorrow, 10/25 is Tumors Suck Day. Organized by the Mass Kickers, it's a day to raise awareness for cancer in young adults. Here are some facts that they posted:

1. Cancer incidence in young adults has doubled over the past 20 years
2. 70,000 people ages 15-39 are diagnosed with cancer each year
3. Young adults with cancer have lower survival rates with respect to the geriatric and pediatric populations


Go here for more details: http://www.masskickers.com

Had an appointment with a neurosurgeon today. It was scheduled 6 months ago just to check in on basic neurological functions.

All is good on the outside. I have an MRI in April to check on the inside.

The interesting thing is that I've had so many neurological exams that it's becoming routine.

The funny part is that he made me put my hands up and put my fingers to my thumbs several times. Sort of like how the "chicken dance" begins. It's a good thing that I'm not a neurologist because I'd have people doing the chicken dance and the macarena as part of the exam.

For the last few weeks I've been following the story of Arianna E. of Omaha and Arizona who was diagnosed with a brain tumor just before starting her senior year of high school. A co-worker told me about her as they are members of the same church.

Arianna underwent a similar surgery and the pathology report came back with the same type of tumor I have...astrocytoma II. The surgery went well, however she's still experiencing some mobility issues. They were not able to get all of the tumor and so they are deciding on another surgery or other treatment options.

It amazes me that a person more than half my age had to undergo the same thing. It's also a reminder that brain tumors can affect all people regardless of age and gender.

Best wishes to Arianna and her family. My hope is that she returns to school soon and is able to enjoy that last great year in high school. Here is her CaringBridge website:

http://www.caringbridge.org/visit/ariannaelnes