Sunday, May 23, 2010

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


Saturday, May 15, 2010

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.....

Saturday, May 8, 2010

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.

Sunday, May 2, 2010

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!