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.

I'm excited

Because my son is wearing pants to school, instead of shorts. A great transformation has occurred, overnight it seems.

One day he's wearing shorts and dirty shirts in 40-degree weather, and the next, he's wearing pants, a hoodie and shoes that aren't crocs. And if that weren't enough, he's showering AND washing his hair (and rinsing everyday). He also has discovered the wonders of using a messenger to carry his stuff. Before, he just carried several 2-inch binders, and a box of writing utensils in his arms.

I know the reason for this change, and I don't want to embarrass him. I'm just having a blast seeing him go through the stages of growing up.

Reelin' In the Years--

I wasn't expecting it, but I experienced a big emotional tsunami looking through my old yearbooks last weekend. All of our books remain in boxes in our crawlspace, and I needed to find a particular one that we'll read in my book group. While doing so, I found said yearbooks, and got the urge to pull them out and even read autographs my classmates were kind enough to give.

The pictures struck me first--once young kids, now middle-age adults. Some are grandparents now. Others are dead. More on that in a bit.

One picture that I loved then, and still do, shows a little 7th Grade boy eating a corn dog, whilst listening to music on 1980s-standard headphones, ignoring the buddies on either side of him.That boy is now a man with 16 years of experience at Intel.

As I flipped through more pictures, I came upon some of a friend(Christina) I made in

Kindergarten about 37 years ago. We remained friends through junior high and high school

She died of leukemia our Junior year, as did two other kids. She played on the volleyball team,

so there were many of her with her fellow athletes. What got me emotional was reading her

words to me. Her nickname for me was "spot" because I'm short. We went to separate schools

Freshman year. In many of her notes, she thanked me for my long-term friendship.

While her comments made me sad, others made me laugh at the adolescent goofiness that

produced them. Here are some of the better ones:

• Let me be the first to sign your crack!
• I hope you stay sweet!
• Thanks for your help on the Africa crossword puzzle ( don't think I could do that now).
• Next year, keep your hands off my french fries!
• Hey Eden, I'm writing in pink again this year.

It also made me laugh to see what I had done to the yearbooks, including sketching some

mustaches on girls that scared me, or writing "bitch" on their pictures. Again, adolescent

stupidity. I also made note of the boys I thought were cute, but will always be worshipped

from a distance.

And then when I finished looking through the books, I got on Facebook and discovered that

the 26th anniversary of Christina's passing was near.

How coincidental that I had just been thinking about her.