King for a day--or at least an afternoon!

 A couple of housekeeping notes:  First this blog site  now includes a poll.  The last one was regarding the presidential race (thank you to the one person who voted). Whoever voted (Yukon perhaps) is an Obama supporter. 

Please check the latest poll, which asks (my one or two followers) what should be the most important issues in the upcoming election.

On another quick note, as promised in an earlier blog, I found out the result of my scan. The residual tumor does not show up much on the scan, which is great news! If an awake craniotomy plus 24 rounds of chemotherapy can't whip a tumor's ass,  I'll just get a sharper whip.

On to business:  I had a fabulous weekend watching football.  Yes, you read that correctly, I watched football--college football to be exact.

But this wasn't just any game.  It was a game between my alma mater, University of Oregon, and my husband's alma mater, Purdue.  All you need to know about the UO as a learning institution is that the movie Animal House was filmed there.  All you need to know about Purdue is that popcorn king Orville Reddenbacher is an alum.

So like any football fan, I perch in a comfy chair, with a beer. Don't take this the wrong way, but I feel like a man.  I say to my husband, "It's good being a guy isn't it?"  He agrees it has its moments.

Both teams suck, but Purdue takes the early lead, and UO throws a few interceptions. ThenUO's running back decides he has fire in his belly and takes a punt and turns it into a touchdown. On a bad note, UO loses yet another quarterback, I believe to a knee injury.

Still UO wins the game in double overtime! It's a symbolic victory.  I'll take any I can get.

"Everyone needs a Sam."

We've been watching the Lord of The Rings trilogy on DVD.  In the movies, the hero, Frodo, has a loyal friend  named Sam who accompanies him on his quest to destroy the powerful ring. Many times, the power of the ring overwhelms Frodo, and he questions Sam's loyalty.

While watching yesterday ( I can't remember which of the movies), we came upon a scene where Frodo is delirious and lashing out at his friend, Sam.

Sam says,  "Mr. Frodo. It's me.  Your Sam." 

My son has a best friend, also named Sam, which prompted my husband to say, "Everyone needs a Sam," meaning everyone needs a loyal friend.

My boy could have said anything, but true to form he had to sneak in a one-liner:

"Yes," he says, "Sam's are good for your colon."

So, I guess, by my son's pretzel logic, friends help you poop.

In ten years of being his mom, I have yet to figure my son out. I'm open for suggestions.

Seven years later, you have to ask yourself the question: Do I feel safer?

In general I will try not to make this blog political.  As a busy mom with brain cancer, who has a spirited boy, I don't pretend to have a perfect grasp of the issues. However, today I must remember one of the scariest events to happen in my lifetime.

9-11

It's my generation's day that will "live in infamy".  On that day, my son was 3-years-old.  We, along with many other Americans had the "news"on, frankly because the way the day was going, we weren't sure what or who was going to be attacked next. Secondly, I can't speak for others in my immediate family, but at least I wanted to hear what President George W. Bush (remember him?) was going to say. If  you want to remind yourself what he said, it's easy enough to look up on the internet. It was actually a pretty good speech, but it was made seven years ago, and this is today. 

Having such a young son at this time presented a bit of a problem. Despite our best efforts, we couldn't keep him from  seeing the continuous video loop of planes crashing into buildings, and 

people running for their lives.  That's the news business today-- a game of one-upsmanship, and the viewers pay the price.

Anyway, my son's reaction was sad but predictable. He was crashing his toy planes like he saw on TV, and had nightmares.

Off went the TV.

Seven years later, I'm not sure I feel safer.  I believe hatred toward this country has escalated, when immediately following 9-11, the world expressed it's sympathy for the U.S.

Again I'm just a brain tumor mom, but I'm wondering what happened to that sympathy, and what happened the the feeling of unity that many Americans had following the attacks.

Life changed forever after 9-11, yet it seems with the "war on terror" that was ignited by the attacks of that day, we've been living the same nightmare ever since.

Wake me up when September ends.

Communication Breakdown

My computer is maybe 10 feet away from my spouse's. I speak to him in his language:

"I'd like to make a meeting request," I say.

No response.

The meeting I'd like to have is regarding our son, who is drawing unwanted attention from the recess duty teacher today, and, in fact, has been since school started over a week ago.

I continue my exchange of emails with my son's teacher, and almost give up on my husband when ten minutes after my "meeting request" he says:

"So, you wanted to request a meeting dear?"

"If you don't mind, dear," I retort.

"I'm available the next half hour".

So we attempt to have a serious conversation, while he's getting a glass of water, I'm going to the bathroom, and so on. Despite the awkward circumstances the discussion is fruitful.

Skip to dinner:  I'm cooking and get spattered by hot oil.  I yell at the top of my lungs "OOOUCH"!

The man on the couch behind the paper doesn't hear the scream, so I have the following scintillating conversation with myself:

"Gee dear, You all right?"

"Yes, I'm super. Thanks for asking."

"Dinner smells good, dear!"

"Why, thank you, dear."

The couch/paper man all of a sudden comes to life and says something like:

"You know dear, you aren't crazy yet.  At least you aren't arguing with yourself."

Cold comfort. I'm sure that if I were arguing with myself, I'd still lose. I'll see if I have any better luck getting my son to do his homework,  than I did trying to reach couch/paper man.

It's amazing how people can live in the same house and have nothing to say.

Dropping the c-Bomb Part 6

Fast forward to today.  

As of now I am off chemotherapy, but we're watching my head closely with scans and blood tests every three months.

I am thrilled to have this break from chemo.  Sometimes I am told "you didn't have the heavy-duty chemo". It's true that it was convenient to be able to take it at home, and at one point I thought Temodar wasn't "heavy-duty" chemo either.

Until I actually took it.

I mentioned that every once in a while, I have to make a reality check--have a "come to Jesus" meeting with my head. Today was one of those days--MRI day.

MRIs are like being buried alive with Beck music, specifically the following tracks:

"Devil's Haircut", "E-pro" and "Novacane".  This threw me for a loop the first time I had one, but now I'm a Zen Master.  I can almost sleep through the exam.

I can't help but get nervous on MRI day. Today it took longer than usual--more like 45 minutes instead of the standard 30 minutes. As I write this I'm wondering if the test showed scary changes. If it didn't this time, it might next time, or the time after that. All will be revealed in a week when I visit my current oncologist. 

In my more sober moments, I have referred to my tumor as an assassin or stalker, threatening me, but never letting me know when or if it's going to pull the trigger.

So I'll go listen to some Beck.

Dropping the C-Bomb Part 5

Goodness, where are we now! I've been diagnosed with a brain tumor,  have had an awake craniotomy, and undergone rehabilitation due to temporary paralysis.

Although I am out of the hospital, I am nowhere near 100% in any way. We retrofit our house so that for the time being, it's easy for me to shower. We get a handlebar for me to grab onto getting in and out, and a bench of sorts for me to sit on, so I can wash and more or less keep my head above my heart. 

I'm supposed to continue doing physical therapy at home, and go to outpatient occupational therapy.

I think it is about two weeks after I leave the hospital that I go see the surgeon for a follow-up. We're hoping that we will find out how bad my tumor is and what other treatment I will have for it. 

The first thing the surgeon does is ask me how I am.  Duh! Then he asks me to walk for him. As I step with my right, and drag my left a little, he seems impressed with his work. I walk like a 4-foot Frankenstein! I've even got the stitches in my head!

She's Alive!

My husband and sister are present at this post op visit, so they can ask questions, and help remember what he says.  He describes my tumor as "trying" to become malignant.  The biopsy reveals it's an anaplastic oligodendroglioma. Anaplastic means some malignancy was found. Oligodendroglioma refers to the part of my brain that's affected.

 Doctor says that if the tumor has chromosome deletions a.k.a. bad DNA, then it should respond well to a relatively new chemotherapy called Temodar.  The good news about Temodar is that it comes in a capsule.  At this time I figure chemotherapy will be a cakewalk. Doctor also says I will probably need radiation in the future, but not right away.

I think it's when I visit the surgeon that I'm told he thinks he got a 95% resection, meaning he thinks he got 95% of my tumor. Good news. It is near impossible to get all of a tumor, though, which is why I will need therapy and frequent MRI's.

I also visit a neuro-oncologist, and another neurosurgeon to discuss therapy.  It turns out my tumor has the chromosome deletions, and both doctors agree that just the Temodar should do.  

So I start a regimen of 24 cycles of  Temodar five days a month, with monthly blood tests, ironically to see that I'm healthy enough to take my chemo. I also get anti nausea meds. They will come in  handy.

Although I have been advised against it, I look my my tumor on the web, and look up stories of other survivors. I am disturbed by what I read--stories of multiple surgeries--losing basic functions. Statistically, folks with my kind of tumor live an average of 10 years.

This will be the first of many reality checks I will make with my illness. 

Our trip to Umpqua

Three years running, our family has been invited by some dear friends of ours to go camping in yurts near the Umpqua Lighthouse on the Southern Oregon Coast. As camping goes, yurt camping isn't roughing it.  A deluxe yurt has a private bathroom, heat, futons to sleep on, a fridge and a microwave oven.

Despite all of the comforts, one can still enjoy the beauty(and quiet) of the forest.

As I was cooking lunch one day, this wandered by our campsite:

This baby deer wasn't alone.  It was looking for lunch with it's mom and sibling. My son says the Doe gave its babies the deer version of the skunk-eye when she caught them fighting over a huckleberry.

Meantime we were walking distance from a lake. I walked the trail around it almost every morning. We all loved to swimming and kayaking in the water.  My husband tried to get pictures of our son playing on the water, but as you can see he was too far away:

On another positive note, It was my first chemo-free yurt trip. One does not want to be camping even in a yurt, whilst on chemo. It made for a pleasurable unofficial end to summer.

Back to reality.