Well she went in the tunnel for the millionth time

Excitable girl they all said

The machine took pictures of her frontal lobe

Excitable girl they all said.

Well she's just an excitable girl..

Woo, Wah Hoo

Woo Hooo

Excitable Girl

Her brain looked like a Polish frank

Excitable girl they all said

So the doc said de-bulk it while she is awake

Excitable girl they all said

Well she's just an excitable girl..

Woo, Wah Hoo

Woo Hooo

Excitable Girl

The gas-passing team warned her to not throw up

Excitable girl they all said

For her head was in pins and all screwed up

Excitable girl they all said

Well she's just an excitable girl..

Woo, Wah Hoo

Woo Hooo

Excitable Girl

After five long days, she tried to walk again

Excitable girl they all said

And they pumped her with steroids til she was insane

Excitable girl they all said.

Well she's just an excitable girl..

Woo, Wah Hoo

Woo Hooo

Excitable Girl

Knives, gamma rays and chemo

I had a grand mal seizure

I fell out of bed

That was how I knew

There was something in my head

I went to a doctor

I took a little risk

He said knives, gamma rays and chemo

Will get me out of this

I'm an innocent bystander

But somehow I got blown

By the storm that is cancer

The tumor seeds have been sown

Gonna hide in Hawaii

A desperate woman

Knives, gamma rays and chemo

Catch me of you can.....

The Toxic Twinkie's Sister

It's official...the tumor's back. Since we called the first one the Toxic Twinkie, we'll call the recurrence The Toxic Twinkie's Sister.

According to the neurosurgeon I saw yesterday, the sister is smaller than the first-born, but recommends another awake craniotomy, followed by chemotherapy and radiation when I'm "feeling better" from the surgery. Really?

I should add that my husband and I got to spend about three hours at Oregon Health and Science University (OHSU). Total time with the doc=maybe 45 minutes.

I'm still consulting with doctors, and honestly, there is not a good time to do what needs to be done. I keep remembering how I was paralyzed following the first surgery (or as the neurosurgeon said, "you were a little weak") so I am anticipating that happening again, which is ironic since the purpose of the surgery is to keep the tumor from paralyzing me permanently.

The chemo the doctor proposes me taking is called Avastin, a drug not approved by the FDA for brain tumors, but still a standard second -tier course of treatment. It is also given on an outpatient basis, but I would not be able to take it at home.

As for radiation...never had it, but it will require daily hospital visits for perhaps six weeks.

I was going to go see my sister-in -law get married, and I was going to go to my 25-year high school reunion.

But I may spend my summer just being sick.

You learn

Something I learned early on my cancer journey is that not everyone dies right away from it. I had thought cancer was an immediate death sentence, so it is a relief to know that it is not. I have lived almost four years with brain cancer.

But I have learned that the threat and the worry doesn't go away. That's what keeps me awake at night: the unknown, the future, the past and today. All remain mysteries for me to solve. Reality is still difficult to face, as difficult as looking in a mirror or taking a step after too many margaritas.

Sadly and selfishly, I have learned to embrace the notion of The End, because I will no longer worry, and I won't be a burden to anyone. If only I could control when The End comes, and tell God, or whoever is listening, that He can take me, but only after my son gets married and gives me grandchildren, only after my husband and I rediscover each other.

Meantime, I'm preparing for a new phase. People will say to me that I don't look sick, because I'm fat, and still have my hair, and I can still tap into what gray matter I have left. But last time I saw my doctor, she suggested that if my scans confirm that my tumor is growing back, it may be time for radiation. I may as well still my head in a microwave.

Okay, not funny. What I'm trying to say is that is when that time comes,I won't be able to fake it anymore. I will look AND act like someone with a damaged brain. Perhaps I should search for a substitute brain. I want to be prepared for the unpredictable.

I will always be thankful for the time I have had between chemo and whatever comes next. It was so nice to be able to go camping, and not feel sick, to get off the couch for longer periods of time. I felt free, almost cured, except for the occasional times when I would babble, or my brain would shut down like a computer. I also gained a new fear of crowds. Maybe fear isn't the right word, discomfort seems like a better one. Crowds get me way overstimulated, and not in a good way. It's hard to avoid them though. I cant stay inside all day, either literally or figuratively. So, I venture out from time to time, and try not to bump into people.

On thing I will never know is what caused my cancer, and why I have lived four years, while some are lucky to live two years. When I was first diagnosed, I asked if there was anything about my lifestyle that could have triggered this. The doctor said "no", but I think the most likely answer is: many things contributed to my cancer, and because I'm not like everyone else, neither is my cancer. It is as unique as I am. Like everyone else, I have no choice but to take what life gives me, and no that life's rules may change at any moment.

The Door

I came home after doing errands. As I pulled up to the house, I discovered that my garage opener didn't work. So I parked the car at the curb, went to the door, and dug through my purse for my house keys. I couldn't find them, and began to feel my blood pressure rise.

Not satisfied that I had looked properly the first time, I looked again, and again. Still no keys. I thought my husband wasn't home, so I called him on his cell phone. Don't ask me what I was thinking, I don't think anymore, just act on instinct. I guess it made sense for me to call him, even if he was an hour away.

No answer on the phone, so I leave a message, the panic still rising in me. I go for a short walk, then call again and leave another message more frantic than the first.

But then I hear something that sounds like it's coming from inside the house. I hear my husband's voice, so I ring the bell.

"Why didn't you go through the garage?" he asks.

"The opener isn't working," I respond.

"I called you. Why didn't you answer?"

"You didn't call me at home."

" I called on your call phone."

"I don't know where my cell phone is, so I didn't hear it."

We find it in a pair of pants on the floor, out of batteries,.

I find my house keys later--in the fridge.

All of these cool ways we have to stay in touch and still we can't seem to reach the ones we live with.

SIGH!

Austin the Epic

It was almost 12 years ago that we (my husband and I) waited at Providence Hospital for our son to be born. His birthmother, a 16-year old girl, was in a dark room, with me and about five of her friends. She was receiving and answering calls until she was 9cm dilated. Weird.

I was in the room, while my husband sat in a waiting area, appropriately enough, reading science fiction. I ran in and out of the room to give him updates.

"Breathe!" a nurse instructed the birthmother.

"You!" she shouts back.

About six hours, and a muscle relaxant later, our birthmother produced Austin the Epic. He had a big head and skinny legs.

Knowing that I was to be the mother of this adopted baby, the nurse handed him to me, after weighing him and recording his ABCAR scores.

"Oh fuck!" I heard the birthmother whisper under her breath.

I moved swiftly to give her her son, but she wouldn't take him from me, so the nurse became the middleman, and sheepishly took Austin the Epic to the girl who just gave birth to him.

I left and started to cry. To say that this is not how I envisioned parenthood is an understatement; anger and sadness instead of happiness.

Eventually Austin the Epic would become our son, but not then. My husband and I were outsiders in the most important event to happen in our lives.

Three days after Austin was born, we were allowed to bring him home. His other mother wanted to have some time with him at the hospital before offering her goodbyes, and we granted her that request.

For the first year of Austin's life, I felt like I was babysitting him. I think I finally felt like his parent the first time he threw up on me. Now I know I'm his parent, because he's 12-years-old, and like any pre-teen, doesn't want to be seen with me.

The Pot Calls the Kettle Black

Almost every Friday, I am part of the Positive Reinforcement Committee at my son's school. What does that mean? Well, it means handing out dog tags, and chains to kids who basically do what they are supposed to do: take responsibility for mistakes, remember homework, be courteous to other students.

When I started doing the job at the beginning of the school year, the kids swarmed me like bees at a honeycomb. Now no-one is interested. The kids have bored of the dog tags. Some may wonder why middle schoolers need positive reinforcement in the first place.

Still I love going, because I get to see the kids, and it takes me back to when I was a kid. I especially enjoy checking out what they wear. On Dress Up Day, for example, plenty of boys dressed in suits...with high tops. Some girls attempted, and failed, to walk in very high heels.

Last week, there was a group of about three girls, and I couldn't tell if they were Amy Winehouse, Lady Gaga, or Madonna wannabes. They all had big hair, big bows in the big hair, and knee-high combat boots. Meanwhile many of the dudes sported High School Musical type male haircuts.

Back to boots, though. Uggs are all the rage. What are Uggs? Ugly boots that are more like slippers. Saw someone wear these with running shorts. Either I'm old, or out of touch, but I wouldn't wear that combination. Having said that, I'm as plain and frumpy as they come, and I never dressed in style, and still don't.

So this is the pot, calling the kettle black.