Wednesday, August 27, 2008

puppy love

Soon it will be time for my son to go back to school, and he would be dreading it like most kids, except for one motivator, the current love of his life, the "hottest" girl in school (his words). We'll call the girl "J".

Sometime last school year, my son told me he liked "J" in the "puberty" way.

Before the school year was out, his whole class knew that he liked "J" in the "puberty" way. He was asked by some classmates how he felt about her, and he chose to be painfully truthful, going so far as to explain to other classmates what "puberty" is.

My son will be going into the 5th Grade, so that makes him an expert on such things.

"J" to her credit was not mortified by this, she knows my son dances to his own beat, and she keeps reminding him how young they are.

What am I supposed to do when my son really goes through puberty? I suppose I can have my husband give him a talk on the facts of life, but he's still learning a few of them himself.

Flying First Class

My boy loves his toys--until he loses them. 

About five days ago, he ordered a pack of "Batman" themes miniature action figure for a game called "Heroclix".  Of course, ever since he ordered them, I've been  hearing things like:

"What day is it?"
"Is it here yet?"
"Can I go get the mail?"

By the way, the shipping was more than the action figures, but no matter, my son paid for it with his allowance.

After much (im)patience on his part, it arrives today.  He opens the package and says:

"I got the Riddler. He's rare!"
"I got a flying thing.  He's awesome"

He was hoping his package would come today, so he could take its contents with us this weekend when we go yurt camping near the Southern Oregon Coast. 

He says: "They're going first class..a.k.a...I'm going to put them in a special bin that doesn't have too many things in it."

A.k.a.: Son's a little excited, and I'm glad...a.k.a. mom,

At least until he loses his new toys at the yurts, and blames me.

Tuesday, August 26, 2008

2008- an open letter to politicians

Dear Politician:

As a citizen of this fabulous country I would like you to hear my voice, while I still have one.
I want authenticity from my politicians. I don't want you to kiss my butt, tell me I'm cute, or that my son is cute, just to get elected. No more bait and switch.
I don't care about your personal life, or anyone else's, but if something unsavory comes up about your past, don't try to cover it up, or blame those who found out about it. Grow a spine and own up to it--you know--part of that authenticity thing.
Furthermore, I don't care about your sex, race, or religion.  You have yours. I have mine.
By the way, I don't wear an American flag pin, but I have been known to fly the flag.  Am I a patriot? Do I love this country enough for you?
Please don't spy on me.  I look like hell naked, and my phone calls aren't that interesting, unless you like hearing me say, "Hi, just checking in!"
I believe our current President has turned lemonade into lemons, and diamonds into coal. 
If you think he's the best President ever, or even a good one, my husband wants what you're smoking.
If you think there isn't a problem with our nation's health care, you can pay my next $41,000 surgery bill, or $2000 a month for chemotherapy. Of course, I shouldn't gripe, my husband has insurance--as long as he stays employed. No pressure, though.
My son goes to public school, where his teacher is overworked, and he is tested to death.
He does well on his tests, but these tests show nothing about what he's learning, or what his potential is. Please improve the public school system.  We pay for it.
Finally, remember, you work for me.  This is my government as much as it is yours. 
Sincerely yours,

Eden Jones

Monday, August 25, 2008

Dropping the C-Bomb Part 4

I'm transported from one Portland (Oregon) hospital to another for intensive rehabilitation.
I have a daily schedule of therapies, including A.D.L (assisted daily living), speech therapy,
physical therapy, recreational therapy and occupational therapy.

A.D.L. is so I can learn to get dressed, brush my teeth (and hair), and even (heaven forbid) wash up.

Speech therapy, in my case, doesn't involve speaking so much as doing puzzles and mazes, and games like seeing how many words I can come up with that start with the letter "f". 

Lets see how I do--words that start with "f":
and let's not forget the f-word that shall not be spelled in full--f--k.

Physical therapy is just that--physical activity to build up my weak left side. In the beginning, I can't do much, so I do things like sit in a chair and move my arms, lay on a table and move my legs. I even get on a makeshift exercise bike.  

At recreational therapy, I get practice having fun in my altered state. For example, I tell the therapist I play keyboard and guitar. The next day, I am provided with a keyboard.  At one point I will join others on my floor on a "field trip" to lunch.  Our goal, is to make sure we get correct change back, and find our own way back to our rooms.

Occupational therapy helps me re-learn other essential activities like making Mac and Cheese and doing laundry. Most importantly, I practice carrying a laundry basket while going up and down the stairs.

I do this every day for a week that seems like a month.

There is some debate as to how well therapy is working.  A social worker for a brief period talks about getting me a full-time caregiver.

Perhaps hearing this talk helps me turn things around.  As if by magic, I find myself able to walk without help. I'm walking laps outside the hospital.

It's not magic, though, that makes this possible.  I attribute my achievements to the fact the swelling in my head is going down, thanks to steroids.

Did I mention steroids suck!?!

After more than two weeks total in  the hospital,  I get released from the kookoos nest.

Now the fun really begins.

What I want to do when I grow up

The best conversations with kids happen in the car. Example:  I was driving my son and his friend to a laser tag place.  My son, still on his B.O.C. (Blue Oyster Cult) kick assumes his friend will want to hear them too.

I turn B.O.C. down when I hear the following exchange:

Son:  You know what I want to be when I grow up. Okay, either an Olympic fencer, Olympic fencing coach, or somebody who runs a D&D (Dungeons and Dragons) shop. What do you want to be when you grow up?

Friend responds: I want to be either a policeman, a pilot or a Tae Kwon Do master.

Me:  You want to be a pirate?

Friend:  No, a pilot-- or a policeman or a Tae Kwon Do master.

By the way, they both agree that they like the B.O.C. song E.T.I (Extra Terrestrial Intelligence).  

It figures.

Saturday, August 23, 2008

My list of torture songs

 In an earlier post I mentioned songs my son has sung at least 100 times too many.
 I promised that when my brain stopped hurting, I would come up with a list. It's not so much a list of songs I  hate, so much as a list of artists that make me wish I were at the dentist getting a root canal:

  1. Primus (one of their discs is called Sailing on a Sea of Cheese--need I say more)
  2. some Frank Zappa (talented musician and composer, but on his live records talks too much)
  3. Helmet (just plain old-fashioned deep hurting)
  4. some Blue Oyster Cult (sorry husband and son --Buck Dharma rocks, but I do fear the reaper)
  5. Butthole Surfers ('nuff said)
I may add to this list later. To the two readers out there--feel free to pelt me with rocks and garbage or otherwise offer your comments.  

Just for the halibut

I was looking in the mirror as I was performing my morning absolutions--brushing my teeth--drying my hair, and so on, when I thought to myself, my face looks like a halibut's. Moreover, people's faces can probably be categorized into two basic types--halibut or grouper.

I tried to find some pictures of halibut (and grouper) to illustrate my point, but none that I found showed the heads very well. So I will try to describe how these fish look.  

A halibut is a big and ugly fish (but good eating).  I saw some up close and personal when I visited an aquarium. Its eyes are lopsided, with one looking forward, and the other on the side of its head, causing the fish to tip to the side.

The grouper appears to have sad looking eyes and a weak jaw.

I have a lazy eye, so I can look at people with one eye, and use the other to view my surroundings. Brain surgery no doubt has exacerbated this problem. All in all, I'd say that makes me a halibut. My husband I'd say leans more toward the grouper.

I guess that makes my son a seafood platter.

Thursday, August 21, 2008

Dropping the C-Bomb Part 3

After surgery, some of my friends and family came to my room in Intensive Care. When I saw them I couldn't help but cry; although, I'm not sure if I cried because I  was happy to survive surgery or because I was worried about the future.

I was given a Popsicle and almost immediately threw it up. As I did, I could hear fluid in my head and feel pressure like my head was an egg about to crack.

At some point, the surgeon came in. Among other things, he asked me to grip his fingers with my hands, and then push down on his hands with my feet.

I couldn't. My left side was worthless.  This didn't bother me until I tried to reach for my water bottle in the middle of the night.  I probably didn't even know there was a problem until then.

I don't believe the doctor was expecting this. I wasn't either. I thought the purpose of the awake craniotomy was to minimize such complications such as paralysis. Come to find out, some of my family wondered if I would walk again.

For about five days, I was given my maintenance meds, steroids for swelling, and morphine for pain. Because I couldn't walk, assistance was needed when I needed to go the the bathroom. One has to check one's modesty at the door of a hospital.

Note: Steroids suck. They make you look like a blowfish, and they keep you up all night!

Things weren't improving enough, so I was sent to another hospital, where I received  intensive rehabilitation.

At this juncture, I still don't know anything about the tumor the doctor resected,  such as whether it's malignant, or what kind of tumor it is. But I can tell I lost a big piece of my mind.

Would I permanently lose use of my left side? It would take a while, but we would get our answer.

I'll sue!

We had to discipline our son last night.  We had told him we wanted him to pick up his many things that he'd strewn about the house--said that if he didn't, we'd help--by putting things in garbage bags. Our plan was not to throw them away but keep them until he can "earn" them back.

Today he wants some of the things in the garbage bags. I said "no", and  that if he wants them, maybe he should treat them with more respect.  This is when he starts his protest:

"Dad shouldn't have made me pick them up.  He didn't give me a chance to pick them up!"
"I can sue you and dad for stealing my property!"
"I can sue the government for not giving kids enough rights!"
 I told him--"Well, good luck with that."

It's hard out there for a boy, but it's also hard out there for a parent.

Wednesday, August 20, 2008

I'm not lost. I just don't know where I am!

I'm driving home from the brain tumor support group meeting. My goal is to get from  there to the gym where I need to pick up my son from Tae Kwon Do class. I think I know a short cut, so I take it. I start my trip at 5:30 p.m.  I need to get to the gym by 6:45.  It should take me 20 minutes. 

About 30 minutes into my drive I have an epiphany:  I screwed up.  What could have been a short cut has been extended, due to the hugest of brain farts. I don't get to the gym until 6:40!

Such is the life of someone who has had her brain fried--deep fried to a crackly crunch.

Although to be fair  to myself, I had a similar episode before I knew about my tumor. I got lost trying to get somewhere, and my first impulse was to call my husband and scream "Where am I!"

I don't know where I am, but I know what I am--a lost little girl.

Tuesday, August 19, 2008

Leroy Sievers R.I.P

I first became aware of Leroy Sievers, when I watched the Discovery Channel documentary Living with Cancer, which aired May 2007.

Leroy Sievers spent many years as a journalist, some of them as Executive Producer of Nightline.

In recent years, he is perhaps best known for his podcasts on NPR, and his blog "My Cancer".

Like many others I would read Sievers's blog over a strong cup of coffee, first thing in the morning.  When I performed that morning ritual yesterday, there was bad news--Sievers had lost his 2 1/2 -year battle. 

What I liked about the blog, is that it addressed  cancer and death head-on, but at the same time Sievers loved writing about days where he didn't feel like he was in the "cancer world".

He will be missed, and even if NPR continues with the "My Cancer" blog, I don't think anyone can bring the frankness and humanity to it that Sievers did.

Monday, August 18, 2008

This is the song that gets on everybody's nerves

Time for another list. This one is inspired by my adventures with my son and his friends. My son, by the way, loves that he is the star of most of my posts. 

It seems whenever I'm taking him and his friends somewhere, singing erupts from the back seat.
No surprise there.  It's the songs, though, that make these outings "special".

One of my son's favorite songs goes:
This is the song that gets on every body's nerves
every body's nerves
 and this is how it goes.
Repeat until mom's blood pressure reaches stroke level. He likes to sing that one like William Shatner doing "Lucy in the Sky with Diamonds".

Son saw me writing this and wanted to correct me.  His favorite song is from his (current) favorite cartoon Chowder.  It goes something like this:

Spinning, spinning, spinning
everything is spinning.
Swirling, swirling, swirling
everything is swirling.
Whirling, whirling, whirling
swirling is whirling.

So you have to ask yourself the question: Would you rather hear a song sung like William Shatner on Quaaludes, or would you rather hear a song sung over and over again for 30-40 minutes? I'm lucky, I get both!

Which brings me to the list: What songs absolutely torture you?

 I'll be thinking of mine after my brain stops hurting.

Sunday, August 17, 2008

Thing One and Thing Two

 My son is a sturdy boy. His interests include tae kwon do and fencing.  He has a green belt in the former.  Being a young martial artist has given him rather big biceps for a 10-year-old.  He's very proud of them.  He's named them "Thing One" and "Thing Two" after the troublemakers in The Cat in the Hat. 

He was introducing  "Thing One" and "Thing Two" to his friend. His friend starts playing with the fleshy parts of his own arms and says, "This is Thing Three and Thing Four."

I couldn't clearly see  what they were doing, but the banter continued, each of them pointing to something (perhaps a body part) and calling it "Thing Five", "Thing Six", and so on.

Saturday, August 16, 2008

No Canadians Here!

As I'm writing this, it's hard to hear, my husband is playing "Wide Spread Panic" with the amps at 11 (see Spinal Tap).

Have you ever tried to take a child someplace he/she thinks he/she doesn't want to go? Many of us have.

Horror of horrors! We did the unthinkable and asked our son to accompany us to a family birthday party.

Before the party: "Who's going to be there?" "Will there be munchkins?'

Munchkin by the way is his term for any child younger than he is. I also should add that both me and my son are 4'10" on a good day.

I commit a parental error and tell him that his cousin will be there. I'll get to why this was an error later

On the way to the party, son says: "Will there be any Canadians there?"


He's been saying things like that lately. My guess is it has to do with the fact he takes the Weird Al song "Canadian Idiot" (parody of the song "American Idiot) a little too seriously.

We get to the party, and his cousin doesn't show up. Cousin is at the beach with his dad and grandma. Apparently the parental error on my part was that I did not know this, and yet, told 
him he would have his cousin to hang out with.

His cousin wasn't there, but neither were any Canadians.  Hard to tell though.  No one was wearing an American flag pin.

Dropping the C-Bomb Part 2

After the doctor told me I had a brain tumor, I thought, "That's all she wrote. Time to say goodbye to everyone." I asked the doctor if I would live to see my son graduate. He said he couldn't say and referred me to an oncologist.

Sometimes a crisis can pull families together.  My sister worked hastily to find the best doctor she could to evaluate my case.  In the meantime, she suggested I gather the many pictures that had been taken of my head.

This is when things started happening in a hurry.  I consulted a neurosurgeon who had done back surgery on my husband, while my sister had found the name of another neurosurgeon.

Note: I have found out that not all neurosurgeons specialize in brain surgery.

The two neurosurgeons agreed on a few points. One was that my tumor had been growing in my head since Sputnik (look it up). In other words, it had been growing a long time. The other thing they seemed to agree on was that I hadn't had a stroke.  It was the tumor that caused me to pass out in public.

They also agreed that the surgeon my sister found was one of the best in the business, so I consulted him. The surgeon was very confident in himself. That confidence can come across as arrogance, but you want arrogance from someone who is going to play with your head.

He said I was "strong enough" for an awake craniotomy.  He explained other options, such as watching and waiting, but he said that with me being awake (for part of the procedure) he could remove more of the tumor.

My tumor has a name.  It grew to 7 x 5 x 4 centimeters, and so was dubbed the "toxic twinkie", as it was about the size of the loathsome sponge cake. It (and what's left of it) resides in my right frontal lobe.

We scheduled the awake craniotomy to resect the toxic twinkie.  In an awake craniotomy, a patient is not awake the whole time, but at some point, is awakened  so that he/she can  respond to commands as the brain is probed.  So during surgery, I was asked to move my arms and legs, and answer some basic questions.  I truly felt like an "airhead".  Given the fact my head was cracked open, I did have a headache.  I think the whole procedure took five to six hours. I like so say that it was like a bad Star Trek episode without the Star Trek.

We arrived at the hospital at about 6 a.m. I was in a holding pattern for a few hours, while anesthesiologists and nurses visited briefly and left.  During this time, I was having second thoughts about this awake brain surgery thing, especially when the anesthesiologists kept reminding me that I would be awake, but would need to hold very still.  

When I was asked if anesthesia made me nauseous, I said "yes".  The anesthesiology team said, "You need to tell us if you need to get sick, so we can tip the bed over."

How comforting. Valium was requested to take the edge off, but denied as I needed to be on top of my game to assist during surgery.

It turns out, I didn't sick during surgery (that happened afterwards). However there were some surprises in store.

Friday, August 15, 2008

"I fart in your general direction!"

Memo to parents: don't let your 10-year-old boys watch Monty Python.  My husband and  I felt we hadn't corrupted our boy enough by subjecting him to "our" music, so we had to up the ante'
and let him watch Monty Python and the Holy Grail. Every once in a while as a parent you need to remember that your child may not interpret the same material in the same way you do.

But I digress.  As it turns out, our son's watching of the movie coincided with a fencing camp, at which he was known to say "I fart in your general direction" to both opponents and coaches, while patting his head like crazy(at least he wasn't farting). That's my boy!  If you don't know what I'm talking about, watch The Holy Grail, and pay special attention to the "French taunter". I wonder if John Cleese, who plays the taunter is my son's birthfather?

By the way, Monty Python rank way up there in my book. I have hours of enjoyment with my immediate and extended family quoting classic lines.
Time for me to "run away" while banging coconuts together.

Thursday, August 14, 2008

Dropping the C-Bomb

I believe I mentioned in my introduction that I am a two-year survivor of brain cancer.  Actually my (mis)adventures with brain cancer started when my son was a baby in 1999. I was going to get him a bottle and I felt faint. I could feel my eyes rolling back into my head and my body was collapsing, but there was nothing I could do about it.  My husband says I was going 'gak', sort of like the Martians in the Tim Burton movie "Mars Attacks".

I blacked out, and when I came out of it, the paramedics were overhead, asking me if I knew where I was. I didn't.  At least not right away. Normally, my husband can sleep through a tornado, but as luck would have it, he was awake and had called 911 to rescue my sorry ass.

And so began my first of several ER visits over the years. I had a CT scan.  That was the easy part. The hard part was that all anyone could tell me was that my scan was abnormal.

After an MRI and more tests, I was told that I had had a stroke, and put on anti-seizure medication and blood thinners, and was not allowed to drive for a period of time. Eventually, after going about a year with no seizures, the silly fools let me drive again!.

Shortly after that, my next episode happened. My son was in the car with me and I crashed it.  He rode in the ambulance with me to the ER, where my mom picked him up and my husband waited.  I remember he was into these action figures called "Rescue Heroes" and so he had a good time chatting up the paramedics.

To say I was scared shitless is an understatement. Again tests were performed. Straws were grasped at as "experts" tried to puzzle me out.  Some said my potassium was low. Again there was that anomaly in my head. Again I was sent home.  Again I lost my driving privilege. Again the seizure meds.

Then in 2006 this scenario played out again, but with a difference.   I started going "gak" in my sleep, fell out of bed, went to hospital, had blood work done, and was sent home. Over the course of a month, I had three seizures, despite being on anti-seizure medicine.

Okay, we're now past being scared shitless. We want answers! Now! So I go see a doctor who looks at my chart and says "Let's do an MRI, It's been a few years since you had one." I'm thinking, "Yes, let's do that."

The next day, I hear the doctor wants to see me in person.  My worst fears are realized.  He tells me I have a brain tumor. 

Handel vs. Buck Dharma

I'm off to a guitar lesson.  I am learning classical guitar hoping to find my inner rock star. I have been trying to learn a Handel piece and it has been the stuff of nightmares.  Meanwhile, my son, once again, wanted to hear Blue Oyster Cult on the way home from a friend's house. That's where the Buck Dharma part of this post's title comes in.  Dharma is the lead guitarist (and a damn good one) for BOC.  On my son's BOC playlist tonight--  E.T.I (extra terrestrial intelligence), Don't Fear the Reaper, and This ain't the Summer of Love.

Back from my guitar lesson. No surprises.  I suck. Wonder how "Godzilla" sounds on the acoustic guitar?

Funeral Songs

Here's a fun but sick little game to play. Ever think about what songs you'd like to have played at your funeral or remembrance?  Having a life-threatening illness, I have gone there.  If thinking like that is too morbid for you, then you can play a different way and just try to come up with your favorite five songs.  

Anyway here's my "funeral" list:

"Good Riddance" by Green Day
"The Grouch" also by Green Day
"Wildflowers" by Tom Petty
"Time After Time" by Cyndi Lauper
"Always Look on the Bright Side of Life" by Monty Python.

What's on your list?

Allow me to introduce myself

My name is Eden Jones. I am a 41-year-old mother of an adopted son, and by the way, I happen to be a 2-year brain cancer survivor.  I am starting this blog because I have been annoying friends and family with various writings about what my pre-teen son has been doing lately, and I figured why not annoy the whole blogosphere. 

To get you up to speed, my emails have been about how my 10-year-old son insists he's going through puberty, and how his musical tastes have graduated from the "SpongeBob" movie soundtrack to Blue Oyster Cult, his dad's favorite band ever!

Unfortunately (or fortunately depending on your point of view) I cannot share those writings with you, so I will share my latest which is more about the brain tumor side of my life.

I got to thinking that me and singer Amy Winehouse have a lot in common.  We've both been to rehab.  After my brain surgery, I went to rehab to learn to walk and think again, and Amy Winehouse--well--she also went to rehab to learn to walk and think again.  I think my stint at rehab was more successful. 

With this in mind, I took her lyrics to "Rehab" and bastardized them:

They tried to make me go to rehab but I said 'no, no, no'

Yes I can talk, and when I can walk you'll know, know, know, know

I ain't got a brain, and everybody thinks I'm insane

They tried to make me go to rehab but I won't go, go, go.

I'd rather be home with “Freaks and Geeks”

I ain't got two and a half weeks

Cause there's nothing

There's nothing you can teach me

now that my brain has been severely tweaked.

I didn't get a lot in class

But I know my doctor is an ass.

They tried to make me go to rehab but I said 'no, no, no'

Yes I can talk and when I can walk  you'll know, know, know

I ain't got a brain, and everybody thinks I'm insane.

They tried to make me go to rehab, but I won't go, go, go

The doctor  said 'why do you think you here'

I said “because I'm having seizures”

I'm gonna, I'm gonna lose my marbles

so I always keep my chemo near.

He said 'I just think your depressed,

take this morphine and then rest.

They tried to make me go to rehab but I said 'no, no, no'

Yes I can talk, and when I can walk you'll know, know, know, know

I ain't got a brain, and everybody thinks I'm insane

They tried to make me go to rehab but I won't go, go, go.

I don't ever want surgery again

This lump in my head is not a friend

Now that I have lived two years

Everyone thinks I'm on the mend

It's not just my mind

that makes things  so hard to find.

They tried to make me go to rehab but I said 'no, no, no'

Yes I can talk and when I can walk  you'll know, know, know

I ain't got a brain, and everybody thinks I'm insane.

They tried to make me go to rehab, but I won't go, go, go

I'm assuming that anyone reading this post knows who(or what) Amy Winehouse is.  For anyone who wants to see or hear the actual song that I destroyed.  You can find  a video for it on "YouTube".

Here's the link: