Monday, August 27, 2007

Brain Busters (Boosters)

This evening I was gloating to Harley about the mental recognition/intellectual improvements I have made this year (primarily most recently).

There is a great article in the March 26, 2007 issue of Newsweek under "Health for Life" titled "Exercise And the Brain". The article talks about how exercise can help the brain grow new nerve cells . As many of you are aware, I started training for the Seattle marathon in May 2006 and have continued to keep up a fit regimen. As a result, I have found that I have made major improvements most especially in 2007 with my mental concentration and comprehension abilities (which I will discuss in another post).

Now back to my discussion with Harley -
He was telling me of a man whom he met recently who also underwent a very extensive and intense brain surgery (it sounded terrifying actually). He also had been subject to radiation treatments as they tried everything in an effort to treat his brain cancer. After 3 or 4 years and a brain surgery he is in recovery and is an active scuba diver even!

He told Harley how exercise was really important for him in preparing for the surgery and going through the treatments. In addition, he said that working on problem solving math skills was really important in exercising the brain.

Just a couple days ago when feeling proud of myself for gaining back lots of brain function, I had recalled that my area regarding mathematics had been damaged (as it has for many other brain tumor patients). It is an area that I truly have not exercised lately and I was curious if I could gain those skills back or if they had improved also. Thus I found mention of this topic rather intriguing.

For those who have lost vestibular function (like myself) and may also have a vision disturbance (like my oscillopsia) it is very difficult to coordinate the body in ways it did before and to multi-task. So much mental energy is being drawn on and focused toward trying to maintain a sense of balance. Put deafness on top of that too which is another added mental adjustment. It all takes time. Therefore we were problem solving how I could possibly work my mind mathematically while trying to work my body physically in a safe manor as to not insure myself (when doing something physical like running or walking or DRIVING my brain is focused on that one skill of paying attention; if I look off to the side I could lose my balance and fall or drive off the road! - no joke!)

So what Harley thought up was trying it out while lifting weights. The idea is to keep the exercise continuous and not take breaks. When I lift I do this technique by working on an opposing muscle next (moving from biceps to triceps). Seeing as I am sitting and using nautilus equipment I can try to solve a math problem in my head while doing the exercise (I would have a sheet of problems with me). Then before going on to the next exercise I could look to see if my answer was correct.

This evening half way through walking the dogs I decided to give it a try using simple multiplication tables. WOW! LOL It really is hard to concentrate the more intense the workout!

I always walk at a very brisk pace (as evidenced from walking a marathon and completing the 26.2 miles in under 7 hours). Not intentionally, my evening walk was more taxing in that it involved hills and became dark with only street lights when I had the wild idea to try this out. Further, I had the dogs on the leash and I need to mindful when it gets dark that I am not walking in a zigzag pattern throwing me off balance and having periods of pulling the leash and then having slack.

I started mentally going through multiplication tables as I was walking up the big hill. It was still dusk so I could see better and with my balance it is easier going up then coming down. By the time I reached the top the second time it was dark and I got confused. It took me long to figure out 7 times 9, 7 times 8, 8 times 9. I had to really mentally work and break it down to figure these out. It seems the higher numbers of 6, 7, 8, and 9 I had difficulty with and by the time I got half way down the hill I was able to find a system to figure out the answers.

At the bottom of the hill in walking in the flat part of the neighborhood we went to, I decided to move onto a new challenge: Algebra

The Algebra (although very simple equations) I found easier and it was easy after awhile to quickly find the patterns to determine the next numbers. It took me going through a couple equations and plugging in various numbers to realize there was a pattern. This is an area of my brain that has been missing for a couple years so it was nice to be able to recall the old stored information.

My equations were:

x + 2 = y
2x+ 2 = y
2x+ 2n = y
x - 2 = y
2x - 2 = y
2x - 2n = y

I used numbers 1 through 9 or 10 for each of the variables x and n in each equation.

The most difficult was the last equation where I was again walking the rest of the way down the hill to the truck where there was low light. LOL If a neighborhood car came by (bright lights in your face) of course that pretty much eliminated my mathematical problem solving for the moment.

Interesting activity and challenge

New Twist On My Classic Mango Shake

Wow! I have developed a new favorite concoction that just hits the spot!

If you have been reading with me for a couple years you know about my craze and invention of my version of the mango shake I created in 2005. Smoothies and shakes are a real wonder for those of us with NF2 because it is quite common to develop facial paralysis which makes eating a chore and burden. But also many of us NF2ers succumb to swallowing and chewing difficulties. Thus foods that glide nicely down the esophagus and that taste good are a pleasurable delight!

My facial paralysis at first glance is mild now but in December 2004 through 2005 I could not even drink from a glass and spent a year sipping things through a straw. In addition, chewing was hard and I still do have certain swallowing difficulties (why can't they make all vitamins tiny?). Hence the mango shake was born. I think if you go back to the 2005 archive my post title is "Mango Shake" if you are interested in trying my original recipe.

Well I can drink out of a glass now (and have been able to for over a year now). Still, I sure do enjoy the ease, convenience, and texture (ALSO TASTE) of yogurt smoothies or shakes. Often in a hurry I will grab a Danon light and fit smoothie which is an easy meal as it is quick, clean, and no chewing for a long time to consume it!

Here is my new spin and enhancement of the "mango shake":
Now known as the Tropical Fruity Smoothie

1 frozen C & W brand Tropical Smoothie package (it has chunks of yogurt and fruit - pineapple, mango, and maybe banana......Sorry Scott - my brother who is allergic to bananas)

A little bit of 8th continent fat free original soy milk (just enough to cover half the package contents

A little bit of L&A all natural no perservatives pineapple coconut juice (this is expensive and found near the pomegrante and blueberry juices in the organic juice section of the grocery store; I use just a small amount for the flavor)

1/2 cup to a cup of fresh honey dew melon chopped

1/4 to 1/2 of fresh sliced mango

Dethaw (Correction: I mean DEFROST. This a minor example of the complication I now have in usage and recollection of vocabulary words. Brain tumors...gotta love them.) the frozen smoothie package in the microwave for 2 minutes.....Don't fry it! The idea is that it will still be frozen but you just want to soften it enough so it purees in the blender nicely.

From the micro...add the package contents to the blender.

Pour the soy milk over half the package contents in blender.

Now add the pineapple coconut juice (1/4 to 1/3 cup)

Blend together (might want to use the pulse mode so it all gets blended and smoothed together)

Add the chopped melon and sliced mango and blend.


Sunday, August 26, 2007

Surgery Date Scheduled

Well as of this past Friday we have a confirmation of a surgery date. As a bonus I got the date which was my first choice AND in the MORNING ON A MONDAY. This is all good. Why I stress the morning and monday is that according to the article in the July Issue of UW News and World Report (recommended by Marie Drew) it suggests making surgeries in the morning and on Monday or earlier in the week when a doctor is "refreshed".

Thanks mom and dad and aunt Barb and uncle Jason for providing me copies of the issue with the article in it. While I was visiting on the family trip the last week of July, I went through this fantastic coverage to learn everything about having a surgery, choosing a hospital, surgery time and what to know (what happens before and after). This was a GREAT resource!

Thank you so much Marie for informing me about it when I was asking all the NF2 crew members specifics about their surgery experiences. LOL I highlighted the article like mad! It was like I was back in grad school studying the finer points of academia for the purpose of attaining knowledge for discussion, improvement of self skills, and eventually putting things into practice and forming a portfolio.

The facility I have chosen will be the Oregon Health and Science University in Portland, OR and the surgeons will be Dr. Johnny Delashaw and his surgical partner Dr. Sean McMenomy.

A link to OHSU and credentials of Dr. Delashaw are provided in the post title above. (just click on the lighthouse icon).

Interestingly I just added the surgery to my little appointment book. While doing so I noticed that each page has little quotes above (I knew that but had not read or noticed them for awhile). The page for the week of October 22nd has a very fitting and ironic quote which I will share here.

"Man's brain is, after all, the greatest natural resource."
- Karl Brandt

Thursday, August 23, 2007

Where to put the tumors once they are removed?

This is interesting.

I can honestly admit that earlier on in my life I had never thought about donating a tumor as part of my body. Of course everyone who drives a car and gets a new license is faced with the question of being an organ donor but never of donating a mutated part.

I guess I never thought about tumors being in my head that would have to be removed. Well heck they mind as well go to some use and not be wasteful or purposeless that they grew there. I have heard about tumor banks and other NF2 patients donating their tumors for research but I never crossed that bridge before until now. Upon researching funding opportunities and clinical trials for NF, I came upon this thought provoking topic which has my wheels turning. I guess I shall mark that also on my to do list of things that must be taken care of before the surgery.

Monday, August 20, 2007

A very BRIEF update


Sorry to keep you waiting.

We were in Portland last weekend as we had a 3rd appointment (consultation) at the Oregon Health and Science University. It went well. We were actually there a long time. I have a very complicated case. I guess I am just complex and complicated in general. (chuckle)

Upon returning from my family visit the end of July/beginning of August I immediately had consultation appointment #2 at the University of Washington. That one was kind of hairy. Neither Harley or I felt comfortable. We did learn lots of information (things I actually missed as the appointment flowed too fast) and I was fortunately able to review once recieving the captioning notes.

I have yet to go through the notes from Friday. Interestingly, without even giving the doctor in Portland the questions beforehand, he nailed just about a whole page of my questions before I even asked anything! We were really impressed.

So to refresh at this point:

5 opinions from neurosurgeons have been collected
2 surgeons from CA, 2 from Seattle, and 1 from Oregon

Of course there is not a cure so the goal is to address the largest tumor pressing on the brainstem. The idea is to attempt to do the least harm as possible with the hope that I can be restored to my present state.

Even though it is tough and I am doing the best since my last treatment in 2004, surgery is still emminent at this point as I am in a position of walking a tight rope. I have been told it is amazing and miraculous that I have walked a full marathon or am even walking. The idea is to go in as strong as possible so I have a good shot at recovery.

There are other tumors to address and future treatments/surgeries but at this point we are focusing on this big boy that has to be reduced no matter what if I am to have a chance at maintaining where I am and even living.

Oh, and yes there is another big tumor (meningioma) which was one of the tumors to be considered for treatment at the time of radiosurgery. Things did not go according to plan so it was never treated. Therefore, that tumor can be taken out at the same time. It is called a "kissing meningioma" as it is "kissing" or touching the "big boy" vestibular schwannoma which will be debulked.

To eliminate confusion I will paraphrase:

Note: the MRI image is flipped around. The tumors I am having surgery for are on the right side of my head. In the picture however, they are shown on the left side.

The large tumor you see on the film I posted under the title "Want to see my brain?" will be debulked. What that means is that the surgeon will go in and remove what he can without severing the nerves that some of the tumor will be adhered to and without peeling away tumor which has adhered to the brainstem.

So if you are following me, that means part of the tumor will be left behind. It is pretty impossible to remove it fully as these types of tumors like to stick to vital structures and they have a very high chance of growing back.
So yeah, at some point it will most likely regrow (hopefully not too soon and hopefully by then there will be a cure or some less invasive and more viable form of treatment).

The meningioma on the other hand will be removed entirely. Meningiomas are tumors that grow in the lining of the brain and not in the brain matter itself. Think of it as a piece of syran wrap on a hunk of cheese. The tumor is in the syran wrap and not in the cheese.

Alrighty. With the out of town consult I took 2 days from working out and also a lazy day last week. Therefore, I missed 3 days of working out last week!!!! Yesterday we took the dogs on a brisk walk and then it was too late to go to the gym. Today I have to get back on track and play catch up (weights and aerobic/cardiovascular exercise). Therefore I need to get going here and will have to explain things further later.

Have a great week! :o)