Thursday, December 31, 2009

Goodbye to the "zeros"!

Tomorrow begins a new decade. To ring it in, I would like to review why in my opinion 2000-2009 sucked:

An American Idiot president was elected (twice). My mind is still boggling about that one. Okay so maybe George W. Bush seemed like an Everyman, someone you would want to have a beer with, but it turns out, more qualifications are needed to be president. He answered an awful attack on our country by arguably being the World's Bully, while seeming to ignore a natural disaster at home.

That tactic didn't work in my opinion..

I must add, however, that those progressives who elected our current president, thinking there would be change, have a long wait ahead.

The zeros marked the evolution of seizure girl to tumor girl. After carrying a lump in my head since at least 1999, I found out in 2006 that the lump is a special, malignant one, forcing a risky brain surgery that changed me forever. That same year my father-in-law, and my parents' best friends died. Stress! You betcha!

The gift that keeps on giving from the zeros has to be the Great Recession. My husband was laid off from his job along with other remote employees. Yes, hiring remote employees apparently is no longer a cost-cutting measure. Having one person do the work of three, IS.

On the positive side, the decade ended with me reconnecting with my estranged grandmother on my father's side. She passed away this year, but it was great to get to know her.

So I'm excited for 2010 to get here. I'm hopeful my husband will get a job, that I will continue to live with what's left of my brain, and go to my 25th high school reunion and marvel at how old I am.

Monday, December 21, 2009

I had another post ready to publish, but today we got some potentially discouraging news on the job front. Let me bring you up to date: I have a brain tumor, for which I had surgery that by a doctor's definition, left me temporarily physically disabled, and permanently cognitively disabled. Meanwhile my husband lost his job and his benefits in July. He's had leads, but no offers for new work. When he was first laid off, I thought about getting a "real" job, but was advised not to, due to my condition.

I would be okay with this, if there were light on the horizon, but it's near year end, and there is none--yet. So what exactly should I do? Nothing is not an option. I'm on the government waiting list for jobs for people who are disabled, but government moves slow.

Bottom line--I can't wait and do nothing.

Christmas memories.

There are so many. When I was younger my cousins would come over to my house on Christmas Eve, for a present exchange. I would have a chance to play with my "twin" cousin Jennifer. I call her my twin cousin, because for awhile, we looked alike.
One Christmas, my mother handcrafted toy kitchen cabinets for my sister and me. Another year, she handcrafted jigsaw puzzles based on Peanuts comics.
I was annoying and greedy about Christmas, telling my mom (and dad) what I wanted six months in advance. Because of this, one year mom gave me the silent treatment until I understood the error of my ways, in time for Christmas.
Another Christmas I remember well was one where times were tight in our house. I can't remember the reason, but instead of buying wrapping paper, we blanketed gifts in butcher paper, and made festive designs on them.
My dad's estranged father contacted us out of the blue one year, and visited with us. As it
happened, he ended up helping to pay for my trip to Germany, but sadly, died shortly after re-
connecting with my dad.
My folks used to get together with family friends, the Helzers and the Nehrings for a
Christmas party. Later, when my sister and I got older, we were allowed to come too.
The Helzers hosted the party and it was always a blast. Sharon Helzer, my mom's best friend
would have the best spread of food and decorations. Her husband, Richard was in charge of
the tree and music. Richard was legendary for his brawn, and was able to wrestle the biggest,
and most beautiful tree into the Helzer home. The Helzer house WAS Christmas. While the
"grown-ups" visited, my sister and I enjoyed the company of the Helzer and Nehring kids I
miss that for a variety of reasons, the party is no longer part of our Christmas tradition, but it
remains a very treasured memory.
Now I have new traditions and a child of my own. My in-laws usually come from Chicago,
and I host a potluck dinner, after which presents are opened. My body is usually ready to get
back to normal after over-indulging the week between Christmas and New Year's Day.
But it's not New Year's Day yet.

Saturday, December 19, 2009

Dear Former Co-workers.

Hello former co-workers. I want you to know that I enjoyed you're camaraderie when we were together. I hope now that you know that I have brain cancer, and probably had the beginnings of it when we worked together, that you will excuse, or at least understand, what you may have perceived as a lack of competence. You and I both gave our blood sweat and tears, and you'll probably never know how hard it was for me to come to work, day after day, and leave an empty shell of myself.

I was brought up by my dad to not be dependent on anyone else for my sustenance, so it pains me to be "too stupid to work." If you think I'm being hard on myself, ask yourself if YOU'D hire me. I think you wouldn't.

So I have one favor to ask. Assuming you read this blog, please tell me (but don't lie) if you think my contributions were valuable to the places we worked together. Doing so will help me to be at peace with the idea that I'm too stupid to work.

Thanks.

Friday, December 18, 2009

Austin on "dress-up" day.


Today, my son informs me it's dress-up day at school, then shows me this ensamble:







I think the science goggles make the outfit. Oh yeah, and the crocks. I told him, he might attract unwanted attention. He just said, "That's the point" and added the goggles would keep the rain out of his eyes. As of this writing, I have not heard how his day went.

Wednesday, December 16, 2009

Don Pardo? Tell her what she's won for Christmas...a new toilet!

A plumber came with a new toilet for downstairs...Nothing says Merry Christmas like that. My husband says it's "craptastic". Reason for the toilet? The old one couldn't handle poop. Why? Not sure. It seems like we were bleeding money on the plumber last year at this time. Is it the house, or us?

Mostly us. Somehow, getting a working toilet for downstairs turned into getting other projects done, such as replacing a faucet and water heater. Big bucks!

Makes me wonder what we'll need the plumber for next Christmas. Stay tuned.

Meantime I'll be armed with a plunger and a snake, afraid to use them, for fear of gagging.

Tuesday, December 15, 2009

meltdown

I have been feeling good lately, but today I turned into a wind-up toy.

The day got started with poop, which spelled backwards, is still poop. I'll spare the details, but it took five shots with a plunger and a snake to return my son's bathroom to working condition. Poop is the gift that keeps on giving.

This got me thinking about Christmas. Why? Because the toilet downstairs doesn't work either. It hasn't since the Sewage Spill of 2009. And my mother in law will be staying in our basement when she comes, so we need a working toilet.

Then I got to thinking about the Christmas dinner menu, and shopping for it. My mother and sister are bringing main dishes, which will be great. Bruce the decider is a good cook, but hasn't in awhile, so I usually do it, and he cleans up afterward.

I asked him, since he has veto power in our house, what he had in mind for our contribution to the holiday meal. He said side dishes and dessert. For some reason, I chose today to nail down some particulars. I'm already making a salad. He says he wants a "starch", sweet potatoes, a veggie dish and three pies.

Starch is covered. Rice. Sweet potatoes? Pulled a recipe from the net. Veggie dish? It's ten days until the Big Day, but I start flying through the cookbooks, and finally land on a recipe for Ratatouille, a vegetable casserole. Three pies?! Do we really need that many? Yes, he says, we do, as there will be eleven people, so again, I go surfing the net and flying through cookbooks, and decide on pumpkin, lemon, and we'll buy and apple.

Maybe I'm just using my bad brain as a crutch, but I became overwhelmed by thinking of the ingredients I need to buy, trying to avoid other shoppers, since I have a new aversion to big crowds. As this happens, I work up to a five-star fuss, about an event I'm co-producing 10 days from now! So typical of me.

I finally calmed down, but it took some doing. This is a wonderful, but crazy time.


Wednesday, December 9, 2009

Hair

another piece from the writing group.

Everyone asked if I would keep my hair.
I wondered if they would have to shave my head to open it.
What happened surprised us all. They(doctors) did not have to shave my head, and I did not lose my hair to chemotherapy.

I had always been a hairy girl. My mother called me "Cousin It". If you don't know what cousin it is, watch old episodes of the Adams Family. He's the 3-foot monster that's nothing but hair.

Anyway, as a kid I had thick blond hair. Mom used to spend hours brushing it after my bath, and I would yell at her for pulling too hard to get out the never-ending tangles. Finally she got tired of this, and demanded I get my hair cut.

"But mom, " I cried. "It will make me look like a boy!"

"My hair is short. Does that make me a boy?" mom asked.

Good question. I caved and agreed to getting a "Dutch Boy" haircut, which today would be called a "bob".

I eventually grew my hair out again, and got a perm. My sister said I looked like a Chia Pet, and I did.

When it was time to look for my first job, my team of advisers suggested I get a "pixie" or some other short and professional haircut. I got the job, but I didn't want to discuss a serious topic with my hairdresser, or she'd just keep cutting.

I like to get my hair highlighted because is gives shine and color to it. But after brain surgery, I had to wait, I think six weeks, before getting it cut, let alone highlighted. And there is some debate about whether coloring hair contributes to brain tumors. When my doctor said it was okay to do anything I wanted to my hair, I did.

Now hair isn't about cancer. It's about money. Times are tight, so I can't justify spending $62 for a haircut. I recently to a place where I got a $30 cut. I think I'll grow it out for as long as I can stand it. I don't like my hair in my face, and I don't want to look like Cousin It.


Sunday, December 6, 2009

In the Christmas spirit

Come the first of the year, the Jones family begins its journey to the poor house, but I feel more in the Christmas spirit then ever. The husband, not so much, because he gets a high from material things.

We were having a conversation about what to get our son. Bruce suggests getting him a Play Station. I say no to this for a variety of reasons: He has a Wii, and a bunch of games to go with it, including Rock Band, plus has the best computer in the house that he is on way too much. In short, the boy has enough electronics. Austin himself has said he wants nerf toys, but my husband insists on getting one, and sometimes two, big ticket items. And if he can't than Christmas isn't fun for him.

Well the husband is still without work, and I am disabled, so this year we are going to have to get by with enjoying food, family and friends.

I, for one, am fine with that.

Wednesday, December 2, 2009

Media Vultures

Media Vultures. That's what comedian Bill Maher called media outlets in reference to coverage of a recent scandal involving a sports star. The sports star collided his car with a hydrant and telephone pole, and somehow it's linked to his cheating on his wife. The sports star hasn't helped matters by not talking to police and releasing statements that only add to the mystery surrounding this accident. For its part, the police have ended their investigation and charged the sports star with reckless driving. But the media have continued to run photos of Sport Star's alleged mistresses, transcripts of racy text messages, emails and the like.

As a former media vulture, this story has caught my attention, because it has made me think back to what I was taught about newsworthiness. This story fits one of the criteria in that involves a famous person. In all others it fails. In the end, all the media scrutiny may force Sports Start go public with his affairs, with his wife at his side, and possibly lose his star power, not because of his age, not because of his performance, but because he's imperfect. It's not news, it's gossip.

Meanwhile, another recent story for which the media were criticized involved a search and rescue that ended up being a hoax. The story goes like this: A Colorado family caused a media frenzy and search and rescue operation, when it was reported that their young son had been carried away in a makeshift balloon. I would argue the news outlets had reason to cover the story in its beginning stages, because airing the story could possibly aid in finding the missing boy. Problem was, the boy never left home. Once that was learned, the media still covered the story heavily, and given the circumstances I feel in this case it was justified. As the story unfolded it became evident that "Balloon Boy's" parents were reality show wanna-bes, and they were exposed as arguably unfit parents, and criminally fraudulent, by causing multiple agencies to activate for no reason. The story opened up a societal debate on our culture's thirst for fame, and what creepy lengths some will go to get it.

So it is a fine line between what IS news, and what is just gossip. In the new world of Internet and 24-hour news, there is more pressure than ever to get the story first, if not right. And the more sensational the better. The sports star's story is about bringing down a man who until now has had a stellar reputation. But as one blogger noted, if the public wants to put him under the microscope, instead of stirring the turds of his private life, they should perhaps look at his business interests instead.

The Balloon Boy story, on the other hand, started as a legitimate news story, that ended up getting bigger.

Neither of these stories was worthy of the resources devoted to them. There are many stories more important, but I think the sports story should be left alone, and that we should continue to learn from the Balloon Boy story.


Thursday, November 26, 2009

Thanksgiving Memories

When I was a little girl, I didn't like turkey, so I ate peanut butter sandwiches and sang the Johnny Appleseed song with my extended family. I hated that song!


As an adolescent, I still didn't like turkey, but I remember listening to Alice's Restaurant with my family, the smell of mom's pies wafting through the house.

As a young woman, I learned to like turkey, but I worked most Thanksgivings in TV news, so would try to squeeze family before or after my shift.

Now I contribute a dish to our family potluck and offer a toast to the holiday, family and friends.

Tuesday, November 24, 2009

The artificial woman--pt 12 The Useless Uterus

The fact that Rainbow couldn't have children the way normal women do did not stop her from wanting to be a parent. She often wondered how she should bring up the subject of her infertility to boyfriends. Was it a first date conversation? No, perhaps not even a third date conversation. But she couldn't avoid telling her secret to the man who would become her husband.

Frankly she was surprised that anyone asked to marry her. Oh yes, she had boyfriends, but the low self-esteem cloud poured on Rainbow, which made her a handful just to date, let alone consider marrying. Reason? She could never get enough attention.

Plus, Rainbow thought that love was only for those who look good. Perhaps it was because of her failure to let go of the prank James and Scott played on her in high school. They had reinforced her notion that she was some kind of joke, an outcast, because of her appearance.

So she was suspicious when she was introduced to this giant who worked with her sister Lynn. When the giant called Rainbow for a date, she thought he was really trying to get to her sister. Rainbow and The Giant shared similar tastes in music and film. And The Giant was smart.

For three years they dated, two of them living together, when The Giant proposed. After three years of dating, it wasn't entirely unexpected. The timing of the proposal was awkward, during the 11 o'clock news. Afterward, Rainbow called her sister and her parents to share the news, waking them up.

About two years after Rainbow and The Giant got married, the subject of children came up. The Giant knew that Rainbow was a barren-ess, but he hadn't wanted children anyway at first. Seeing the joy that children had brought their friends changed their minds, though. They began to consider their options.

One option was Rainbow carrying The Giant's baby via a donor egg and in-vitro fertilization. Rainbow's doctor confirmed that she, in fact, had one, and that it was healthy enough to carry a baby. However, the cost would be about $8000 a try, plus Rainbow's family had concerns that her hypertension would result in a life-threatening pregnancy.

With the in-vitro idea put to bed, Rainbow and The Giant pursued adoption. Both of them had heard of open adoption, whereby birth parents choose the adoptive parents and maintain contact with each other after birth. The idea sounded good for the child, since he or she would have a way to contact his or her birth family, and good for the birth parents, because they would have some control over their child's future.

At the same time Rainbow and The Giant began adoption proceedings. Rainbow's sister was pregnant with her first(and only) baby. The news filled Rainbow with excitement and jealousy. Didn't nature intend all women to bear children, if they chose? The clouds of low-self esteem rained feelings of imperfection on Rainbow again, because she couldn't do something her sister could.

This was Rainbow's problem, though.

Finally, after two years of waiting, and about $12,000, Rainbow and the Giant became parents through open adoption. The road to becoming parents was a bumpy one, as they had to depend on an emotional young woman to give up her baby. Yes, her baby.

She almost didn't. She had approached other potential parents, but in the end Rainbow and the Giant were blessed with a son. At first Rainbow felt more like she was her son's babysitter than his mother. That changed the first time he threw up on her.

By this time, Rainbow was in her 30s, and had been on hormones a little more than half her life. One of the perks of the hormones was that just like a normal woman, she got a period, sometimes two every month. Those times she'd be blessed with multiple periods interfered with her work, what with having to to to the bathroom to "change".

She consulted doctors.

One did a pap smear, which was abnormal, because of the abnormal bleeding. Another doctor did an endometreal biopsy, which was sort of like having her uterus and sucked through a straw. A third doctor ordered an ultrasound, and depending on the result would follow up with a hysterectomy or ablation, a burning of the uterine wall. The ultrasound showed no cysts or otherwise suspicious growths, so ablation it was.

It was an outpatient procedure that took about two hours. The doctor came to Rainbow as she was waking up and told her, "Good news! We were able to burn the lining of your uterus with a hot balloon."

Say, that is good news, Rainbow thought.

To this day, Rainbow is thankful that her uterus is intact, but she doesn't have periods.




I'm not sick

When I went to the brain tumor support group last time, I stated that I consider myself sick, because my cancer is not gone. Even my doctor has told me that I'm not out of the woods.

Two things happened after I did this. First, a man next to me with the same kind of tumor as I said he was surprised that I consider myself sick, because I look "good". Second, another man who has a a grade 4 glioblastoma said that despite his surgeries, and his current treatment, he does NOT consider himself sick.

I was humbled by the second man, because every time I "go there"-- feeling upset about the deficits I do have, I need to remember to have a positive attitude, a can-do attitude, like he has.

So the facilitator of the discussion tells me to tell myself I'm not sick, except for my brain tumor of course.

What a relief.

I truly am confused, because it's strange having a life-threatening illness that isn't obvious. I don't look sick. I'm far from emaciated, and I have my hair. Therefore to the outside world, perhaps I'm not sick.

Still my deficits are real to me, whether they are tumor related or not, and whether or not they are obvious to anyone else.

Saturday, November 14, 2009

Sweet Home Alabama?


So, at this point there is about a 75 percent chance that we will be moving to Alabama, because my husband has a hot job lead there. The funny thing is, it's for an Oregon company. Anyway I'm a Pacific Northwest girl all the way, so if we do move, I will have to make some adjustments. In anticipation of these, I am making an Alabama List, a list of things I might want to learn, or do, before I go:

  1. Melt my Neil Young CDs, because a Southern Man don't need him 'round anyhow;
  2. Grow my Lynard Skynard collection, because they sing "Sweet Home Alabama";
  3. Ask for Coke, even if I want a Pepsi;
  4. Practice hurricane evacuation procedures;
  5. Lean to like iced tea;
  6. Learn to like grits instead of potatoes;
  7. Learn to screen in our porch if we have one wherever we live there;
  8. Try catfish;
  9. Teach my husband to like Gulf shrimp;
  10. Never say, "Hey you guys!"
  11. Wear nicer clothes;
  12. Get bigger hair;
  13. Go to church?
  14. Find a good cancer hospital;
  15. Learn to say, "I'll just die if I don't get that recipe."
I don't want to move. Oregon is home and my family is here. There is a part of me that hopes my husband does not get this job, but sometimes are choices are made for us.

Friday, November 13, 2009

The Journey So Far

A writing sample from my writing group of cancer patients:

Rainbow was a feisty girl-opinionated, passionate and stubborn. When she was in First Grade, she played hooky from school, because she didn't like the vinyl jumper her mom dressed her in.

The school called and told her mother to pick her up. When Rainbow got home, she admitted she wasn't really sick. Her mom yelled, "Goddammit Rainbow! I'm going to send you back to school!"
She didn't follow-up on the threat.

This same obstinate behavior travelled with Rainbow into her 20s. It gave her the energy to work 60 hours a week at a very tense job in TV news. Back then, Rainbow could hear a million voices and respond to them all.

At 32 the lights began flickering out. Rainbow collapsed while going to retrieve a bottle for her baby son, and was never the same after that. The energy for working 60-hour work weeks, and fussing over clothes was GONE. No one thought they would miss her sassiness, but sassy beats being a zombie, which is what Rainbow felt like after this first seizure.

At age 39, the Big Bomb was dropped. Rainbow found out she had brain cancer.

"This explains a lot," she thought. "It explains why I'm so moody, and why I cant find my belly button, even with MapQuest."

"So when am I going to die?" she asked the doctor.

"I don't know," the doctor said. And even if he did know, he wasn't going to say, for fear of being wrong.

Rainbow had the moldy part of her brain removed, but couldn't walk or use her left side afterward. The obstinate Rainbow came back however, and learned to walk again, and flip her husband off, with her bad hand!

Now at 43, there are many things Rainbow can't do. She must riddle her house with post-it notes to remember. She cannot listen to a million voices and respond to them all. She does not feel good about herself, even though there is an excuse for her incompetence.

No one thought feisty Rainbow would turn into Tumor Girl.

"New Normal" are the words often used to describe how we must adapt after a life-changing event. Rainbow hates the "New Normal" and wants the old one back.

Small things are a struggle now. Making dinner seems to take all day. She needs to nap in the afternoon, and wonders how she will continue this journey.


Wednesday, November 11, 2009

My Sister

My sister Marie was born November 7, 1964, meaning a few days ago, she turned 45. The main thing I want to say about my sister is that I have always looked up to her. Although jealousy is a poisonous emotion, I am jealous of her. There, I said it.

At the same time, I give my sister many thanks. Thanks for finding our estranged grandma. Thanks for helping me find the best doctor to remove my tumor. Thanks for letting me take her boyfriend to my prom. Thanks for letting me hang out with her friends. I could go on and on.

I wonder where she gets it--her intelligence and beauty. They usually don't go together. I literally can't think of anything she CAN'T do. And this is where the jealousy comes in, because I can think of many things I can't do. It's just a fact.

My favorite memory of my sister is of her making forts out of branches in our pasture, back when we lived in Hillsboro. We spent a lot of time in the pasture, riding the ponies, feeding the ponies, and going to the far ends our property to see what adventures lay outside of it.

She has always tried to protect me, but we are both stubborn, so I don't always follow her advice.

But I DO listen. Happy Birthday Month Marie!

Wednesday, November 4, 2009

the artificial woman--pt. 11 The Sleazy Guy

So Rainbow completed college and earned a BA in Journalism. The Family, always looking out for her, warned her that she wouldn't make any money in this field, but Rainbow loved it and thought that eventually love would lead to making a living. Sister Lynn adopted Rainbow's post-graduate job search as a Project, helping her write the perfect resume, getting the perfect haircut, and shopping for the perfect clothes. Rainbow had nothing at all to do with her job search, except contacting a broadcast professional, for whom she interned, and shortly afterward was hired as a radio talk show producer, working at the same station as her former mentor.

The station didn't know what it wanted to do with itself. The hosts varied, from men who wore $500 suits and had trophy wives, to stage actors, to women who wanted to prove they could be just as disgusting as the men. It seemed the station wanted to be a shock radio station. Rainbow took her job as producer seriously, finding obscure stories in the news, and attempting to find the right people to come on air and talk about current events. Before her first day, she had made contact with the spokespersons for City Hall, the school district, the police bureau and the like. The host she was assigned to work for was impressed. She made friends with the wacky diverse group of people who put the shows on the air.

The first person she met was the Sleazy Guy. SG showed her around the building and introduced her to other co-workers. SG had the looks of a young Richard Nixon, and the voice of Jerry Lewis, the comedian. Her co-workers included JP, the new producer for the morning show, who had a wicked sense of humor, and a head full of brilliant ideas. The morning show host was a woman who was abrasive to her support staff, and looked and sounded like a witch. And then there was Gary, who had a desk next to JP. Gary produced the mid-morning show, hosted by a man who was on his fourth wife and chain smoked. Gary held up very well under this pressure, and would eventually become the staff Executive Producer.

The host Rainbow worked for liked her but not for very long. Mr Bill had the afternoon drive time slot. Rainbow erroneously thought it was her job to research topics for his show and book guests. She would listen and talk to the news staff about the stories they were reporting, and try to plan a show based on that day's news. Instead Mr. Bill would come in five minutes before his show, saying he had watched C-SPAN all morning, and he was going to talk about Social Security. He felt uncomfortable discussing topics that were of interest to a younger demographic. He always liked to brag that he didn't need a producer. Eventually he would get his wish.

Sometimes the Sleazy Guy would be working in the booth with Rainbow while Mr. Bill's show was on the air. Rainbow screened the calls so Mr. Bill would know who he was talking to, and what prompted the listener to call in. Sometimes the listener would wait the whole show on the telephone, not get on the air, and yell at Rainbow, not knowing she didn't control Mr. Bill.
During the three hours Mr. Bill was on the air, Sleazy Guy would comment on Rainbow's butt or the butt of the newswoman in the next booth, referring to her as "barnyard butt".

More than once, he said in his Jerry Lewis voice, "When are we going to have sex Yebdog?"
Once, he came up behind her and slapped her on her "barnyard butt" to which she responded, "Hi, Sleazy Guy!"

Another Sleazy Guy picked up Rainbow in front of everyone, including the boss, and kissed her. This one eventually got fired, at least in part, because of this behavior.

These advances offended Rainbow, but at the same time, she interpreted these as some sign that she was attractive, and not the pariah she was back when Scott and James were harassing her in high school.

Eventually everyone at the station got fired. POOF!

To find another job, Rainbow executed a similar approach to the one which helped her land her first one.Folks at the local CBS affiliate were desperate, and hired her as a desk assistant. This meant she did whatever she was told to do, which in the beginning meant making beat calls to local police and fire agencies, running the TelePrompTer for the anchors, or putting tapes in machines to record news feeds. Because television news happens even on weekends and holidays, she was promoted to associate producer/writer and sometime assignment desk editor at such times when no one else wanted to work weekends or holidays.

The first time she produced a newscast was Thanksgiving. It was baptism by fire, but the suits tried to make her feel good about it.


"We think you're great, so we're going to have you work on a holiday," they'd say.

"Congratulations on this new opportunity," they'd continue.

"Don't be panic stricken, you'll have help," they'd conclude.

Somehow at this new job, the Sleazy Guy reappeared, only transfigured and more powerful.

"Yebdog, I'm jealous of your boyfriends." She didn't have time for any. She was working over 60 hours a week.

"I love it when you stand on the chair." The Sleazy Guy was making reference to the fact Rainbow had to stand on a chair to scrawl the days assignments on a white board.

But again, this talk didn't matter. She took it as a backwards compliment, and believed it when she was told she was busting her butt working because her competence was appreciated.

She realized her assumption was false when she actually applied for a show she wanted to work on and was denied.

Just like any other setback, Rainbow took this personally, and had little confidence to move forward. Soon though she would take on the hardest job of her life--parenthood--something an artificial woman can't do effectively while working 60 hours a week, weekends and holidays.







Thursday, October 29, 2009

My Pity Party

Maybe I need to secretly up the dose of my "I don't care" pills, maybe it's the change in season, but I'm not in the best frame of mind. The following unrelated events have been nagging at me lately:

  • I've been more forgetful: Some would say not to worry--that it is just because of my age, and it happens to everybody, or "at least you have an excuse." But I do worry, because of my cancer. When I have a "brain fart", it reminds me that I am disabled, and like everyone else, I'd rather forget that. But today, I forgot an appointment. Yesterday (Wednesday) I thought was Thursday. My Friday volunteer job has been maxing what brain I have left. I would like some small sign of competence, but I don't have it (competence). I should continue to be grateful I have an excuse (for my lack of competence), and grateful I'm not dead yet, which brings me to my next point.

  • My husband lost his job, and doesn't know what he's going to do: He's not feeling competent either, and I remain very frustrated at my inability to help him. He applied for a job at Dell, and is considering a change in career from Software Manager to Financial Adviser, but right now is having too much self doubt. Not good when I'm in that space too.

  • I have a pre-teen with a "tude": On top of everything else over which I have no control, there is my son, a smart boy who wants to be just like his dad, and like his dad, thinks he knows everything. I'm not supposed to parent him, you know, do things like tell him to wear a coat, pick up his room, which resembles the contents of my head. I'm supposed to wake him up, so he can do the homework he should have done the night before. Some decisions I make about him are vetoed. For example, my husband and I both wanted him to go to grandma's funeral, but at the last minute, husband decided that Austin didn't have anything appropriate to wear, so dropped him off at school instead. But I'm digressing.

  • I'm having too many thoughts about death: Watching my grandma fight death made me think about how I want to die. Of course I don't have control over the circumstances of my passing. In all probability it will be from my tumor, but back to grandma. Despite having faith and being told by her favorite priest that she is okay in God's eyes, and despite the fact she lived for 95 years, she didn't want to go. It got me to thinking: Do I want to slowly deteriorate, or would it be best to die suddenly, like in a car crash? Will my passing be made any easier for me or those I leave behind, if I become a person of faith? After watching my grandma, I would have to say my answer to the first question is that I would rather die suddenly than the way I most likely will die, and regarding the second question, faith didn't seem to help my grandma. Also the notion of my husband or son having to feed me, change me, remember my appointments, and so on scares me. I wonder if it scares them?
  • What it all boils down to: I don't know but at 42, I'm going through a transition in my life, and I will be happy again when I've made it through--made peace with my illness, and the uncertainty and depression it can bring.

Sunday, October 25, 2009

labels and disables

There are days I don't feel sick, where I feel like I have a full-functioning brain, but then my brain just stops, even while I'm doing my volunteer job. Brain just says, "Stick me with a fork. I'm done!" It can't process any more stimuli, and switches to impulse power.

The sad part is, mine may be the best brain we have in the house, and we need a better one. Husband is unemployed and can't get off the computer, I have officially earned the label of "disabled", because I went and got brain cancer. Son is an eleven-old-boy, and is making the most of his time to be selfish, and dependent, and as such has no interest in becoming more independent.

I recently asked my husband to tell me when it's time to worry (about not having work, insurance, my cancer, our son, or anything). He lives in his own world, and seems very happy there. He must know something I don't, and I wish that blind faith over to me. My little family seems to be treating the unemployment issue like it did my cancer: It's not a problem yet, and therefore not worth thinking about. I do wish I could support my family with my idiot brain, but I can't.

These are scary times. I just hope they don't get scarier.

Saturday, October 17, 2009

DEBT

This is a piece I wrote from a writing group I just joined. Members of the group picked a word and wrote what came to mind. My word was "debt". Here's what I wrote:

Owe too much money
Have the recession blues.
Where has all the money gone?
Did it go to good use?

Do we need what we have?
Do we have what we want?
Do we have enough?
Yes, we probably do.

When did money become so important?
Can we ever pay back what we owe?
Some things don't have a price tag.
Those that mean the most.

Will the World come to an end?
Is this debt like a tsunami
Drowning me and carrying me away?
Can we ever pay back what we owe?
Can we ever stop thinking of what we are owed?

Can we ever stop saying, "I want, I want?"
And instead start saying,
"There is enough. I am content."
Yes, we probably can..Someday.

Does debt matter when there are other important issues?
Disease.
Famine.
War.

Not Really.

D= DOLLAR
E=EVERYTHING
B=BUY
T=TOYS

Time to give up material things and perhaps pursue more spiritual goals.
Can you do that?
You have to now!
You are in debt!

Pay the Piper.
He won't wait.


Because Just Because

GV's favorite song. We sung it together every time I saw her! Sometimes twice. RIP.

GV, I hardly knew you.

Grandma passed away this past Wednesday, and I have to say I feel grief and relief. Grief because I hardly knew her, or any of my grandparents for that matter. Relief, because she is no longer fighting a losing battle to stay alive.

I do wish I had known her better, and I wouldn't have known her at all if not for my sister, who found her using the Internet. During the time I had with her, we did enjoy singing together, playing word games and even talking politics. Grandma was pretty progressive. She was very pleased to see Obama win the presidency, for example. I don't know why, but I was surprised that she had any political opinions. I was raised to believe that grandma was ignorant, but she had more intelligence and creativity than she was given credit for.

I find it curious that all of her four children are estranged from her. Only they know what GV did to alienate herself from them. Being a grandma requires different qualifications than being a mother, I guess. It is likely none of them will be present at her funeral this week.

I will always believe that she lived so long (to age 95) hoping that she could mend fences with them. She never will, sadly.

Wednesday, October 14, 2009

GV update

For about two weeks now, I have been watching grandma (my dad's mother) die. These final days do not appear to be the spiritual wonder that she perhaps hoped they would be. In fact, just a few days ago, she declared to her priest, "I don't want to die!"

As of today, she is peeing blood, due to kidney failure. She is on oxygen, but is struggling to breathe. Her breath smells like poo. Her mouth is open and her eyes closed. It's hard to tell if she knows that I am there, but a hospice nurse did tell me that she thought grandma can still hear.

Since she doesn't want to go, she's fighting, and the fact she's a woman of faith is not easing her final journey. I wonder what she is fighting for. Perhaps she would like to mend fences with her four estranged children. It's clear though that her faith is not getting her through this. She may not be suffering, but if she is, she can no longer communicate it.

She has to meet her maker on her own terms, but if I were her, I would not want to live in the state she's living.

Sunday, October 11, 2009

Mason and the teacher

When I went to the last brain tumor support group meeting, I thought the guest speaker was going to talk about Social Security Disability benefits. Instead he was an attorney who specializes in the rights of the disabled, and knew little about Social Security or Washington law. Very unfortunate for our Washington brain tumor patients.

But I'm babbling, and I'm not even talking. Before the speaker was to perform his well-rehearsed power-point presentation, the moderator of the group asked all of us to tell him our experiences with Social Security.

When it came time for one man to speak, his voiced quivered as he noted that he used to be a "Vice President for Mitsubishi," but now has "only two good hours (a day)." Wouldn't it be nice, if one didn't need his brain.

In contrast, another lady who is a teacher, is struggling to keep up with the demands of her job, and she is worried what her employer may do about it. She has too much on her plate: a new marriage, a new baby, going to school, being a teacher. She's trying to "prove" that her brain tumor isn't affecting her.

But how can it not? One of the hardest things to do as a brain tumor patient is to admit he or she is disabled, if not physically, then cognitively, even if the difficulties are hard to notice. It was an easy call for me to make when I was taking chemotherapy. I felt flu-like symptoms all of the time it seemed like. With my husband being out of work, and my being off chemo, I had this fantasy of going back to work, and got a reality blast during an informational interview, at which everything that could go wrong--did. The interviewer was late. I was tired and ergo was not articulate. I used to be an employers wet dream. I would work long hours, cover others' shifts, and I was competent enough. Really I was.

But that was yesterday, and this is TODAY! And today is my DAY! To do what, I'm not sure.


Tuesday, September 29, 2009

Trying to close the door on Grim who has come to talk about the reaping

Grandma was way out of it today. She can't eat without help, and doesn't know what she wants when she has help. She is being kept comfortable, but near as I can tell will basically starve and dehydrate to death. I try to feed her and she gags. I give her drink and she says it's burning her throat. It's hard to watch, but death happens to us all, and there is no pretty way to get it done.

I think the best we as people can hope for is to not leave too much unfinished business. Sadly my grandma has bad blood between herself and her four kids that probably won't be made good before she dies--unfinished business. I would not have gotten to know her had my sister not looked her up. I am glad I have had the chance to be with this grandma. I didn't have that opportunity with my other grandparents.


Friday, September 25, 2009

Musings about health care from a frequent flyer.

The current debate over healthcare reform hits home for me because I'm a frequent flyer, and soon the healthcare my husband get through his company will dry out. I believe his company is paying Cobra until December. Husband is laid off as you may remember, and I'm not fit for dog meat.
Having been in need of our state of the art healthcare system, I've have had a few revelations:

  • Doctors do a lot of guessing and don't get much time with patients, all to the patient's detriment;
  • It appears (at least in my case) that getting routine checkups makes no difference as to one's long-term health (see above observation);
  • It is problematic that health care is a "benefit" of one's employment, especially in our current recession;
  • As such, not everyone who needs government assistance is a freeloader;

In reviewing my ten-year journey with brain tumor symptoms, tests and the like, I feel like I received quality care only from my surgeon and the oncologist and nurse practitioner who handled my care after my tumor was diagnosed in 2006. I will always question what in the world happened between 1999 and 2006 that fell through the medical cracks. I had more than one scan, more than one trip to the emergency room in that period and no one knew what was wrong with me, but acted like they did. And we have the best health care system? Really?

Thursday, September 24, 2009

notes on life in eden

Happy belated to my brother in law, Nick Schiller, MD. Doctor Schiller turned 45 yesterday, and doesn't look a day over 40. What's most lovable about the doctor is that he is willing to do anything for money, including taking me to the prom, as a favor to my sister. That's one of my proudest moments--having a paid escort to the prom.
Grandma has taken a turn for the worse, and is now receiving hospice care. She has fluid in her lungs that isn't treatable. I've been going to see her everyday, as if that can somehow stop the inevitable. It can't.
I will soon be busier with my volunteer activities with school starting. I also become connected to a newly formed non-profit called the Turner Syndrome Foundation of Oregon, and an hoping to do some work for it. And I have also joined a writing group for cancer survivors that I hope will improve my blog's content, and keep me out of trouble.


Tuesday, September 22, 2009

moving forward?

So I've been advised not to look for work. My husband is out of work, but is "networking" in an attempt to change that. If only the attempt was enough, but it is not. We can only go so long with this uncertainly. We're scared, especially since I have my illness, and our health insurance situation is in flux.

We tried to have a family conversation about it last night, but the son got upset at the notion that we won't be able to do things like go out to dinner, and buy him $40 books or games anytime he wants.

I thought we had used up our bad stuff quota in 2006, when Bruce's dad died, two good family friends died, and I got diagnosed with a brain tumor, but once again I was woefully in error. It's our time again.

So borrowing a line that I think belonged to Bette Davis, I'm going to have some chocolate; it's going to be a bumpy night.

Monday, September 14, 2009

Portland Brain Tumor Walk 2009


Here are some pictures.. I was very pleased at the turnout (about 800), and I had some special guests join me this year:

My son and husband.




crabby son

son and nephew Simon

Tumor Girl


Finishing the walk!

Sunday, September 13, 2009

The Search is Over

I will henceforth not look for paying work again. This despite the fact my husband and I are both unemployed, with a child, and I have a chronic illness. It's a bad idea.

Today begins a new unhappy era. The only solution I can see to this current problem is that I teach my son and husband to live in shit, which I am able to do.

I'd like to help him but I can't. Due to circumstances beyond my control, I've been rendered useless. You can ask the experts, if you don't believe me.

Oh sure, there's government help. We should all use it and suck our pride up.

And the government just loves to provide quality, inexpensive healthcare too.

I'm so glad I've given up the stupid notion of working and ignored my instinct to try to help my family in its time of need.

Monday, September 7, 2009

Dear Brain

You have failed me for the last time. You fool me into thinking that you'll actually work for me, and then when I least expect it, you make me lose my way, babble like an idiot, and do random things...anything except what I'm supposed to be doing.

So okay you win. I will use you sparingly as thanks for your not completely leaving me. At one time you were able to get me through a 60 hour work week, help me maintain three part-time jobs, and earn the nickname "bulldog" from my co-workers. Remember that? I don't. Not anymore.

I appreciate anything you can give me, anytime you are willing to provide. I will try not to ask too much of you in the future.

Love,
Your Host

Thursday, August 20, 2009

What's been happenin'




It has been awhile since I have posted. We have been traveling, despite the fact that just prior to our travels, my husband got laid-off.

The reason we traveled anyway: we had already planned and paid for these trips. At least that's our story. Planning to go on a long trip can be stressful in the best of circumstances, but I had a lump in my stomach about going while we are months away from being what I call "sick-oed". Of course Michael Moore made the movie "SICKO!" but I've changed the word from a noun to a verb. "Sick-oed" is when someone is a layoff or catastrophic illness away from having huge bills that can't be paid.

Of course my husband got a "package", but come December, we may be without insurance. We're thinking somehow we'll come away from this unscathed.

To circle back to the point: My husband thought of this trip as the vacation he had earned and waited for all year. Eventually, I would too, but at first, the notion of "vacation" didn't seem right.

Before we left I had my regular check of my head. Here is the lovely picture:



The black part to the lower left of this image represents where my tumor was resected. We were happy to hear that this picture compares favorably with those from my last scan.

First stop on our trip--Chicago. My husband grew up in the suburbs, and his sister and mother
still live there. As luck would have it, our nephew in Oregon just happened to be performing in a Second City comedy camp there, so we enjoyed watching him do improv and sketch comedy with other 12-year-old boys. They all put on a very enjoyable show. Sadly we don't have video of it.

We visited some of our favorite places there, including the Museum of Science and industry. My husband likes the train layout.

We also visited the Oriental Museum, because our son has gained an new interested in ancient Mesopotamia. He wants to learn to read and write Sumerian, because in his words, "no one will know if I spell anything wrong." By the way the Oriental Museum is near Hyde Park, where President Obama lived (before going to the White House).

We also saw my mother-in-law who lives in the suburb of Schaumburg, Illinois. We went with her to a Lego museum, like Legoland in San Diego, on a smaller scale. I couldn't get good pictures there. My hand wasn't steady enough. But I got a good one of Einstein, who was working as a greeter.
By the way, flying sucks! Also by the way, we flew United.

On the second leg of our trip, we left Number One Son with his aunts and flew to Las Vegas, so my husband could be best man and his college roommate's wedding. Turns out, Vegas is feeling the economic pinch too, so we were able to stay at the Belagio for a (relatively) good price. Bruce got some nice shots of the fountain.
Our first full day there, we took a bus to Hoover Dam, an impressive piece of work, and man-made wonder.

That night we saw performance artists Penn and Teller. It was there I was struck by the fact that folks actually bring their children to Vegas! Someone's 8-year-old boy was called on stage. Luckily the show was mostly PG-13.

We saw another show that wasn't, however. It was called "Jubilee" and it was an old-style Vegas titty show. I laughed because it was like watching the end of a Mel Brooks movie. It occurred to me as I was watching it--my boobs are too big to be a showgirl, and some of the showgirls were more like showgrandmas.

Our favorite show we saw in Vegas was LOVE, a Cirque Du Soleil extravaganza set to Beatles music. LOVED IT! Of course, I'm a fan so that helps. The music was mixed in an interesting way, and outtakes from some of the most popular Beatles songs, such as "Strawberry Fields," were played. We also saw the famous underwater Cirque piece called "O". We liked LOVE better.

The primary purpose of our detour to Vegas was to attend a wedding, and if one wants a quick wedding, Vegas performs them. It's the wedding capital of the US. The wedding was a very small affair, about 20 minutes long. The party was shuffled into a chapel after the prior couple finished, then was shuffled out for pictures at the gazebo and paperwork in the chapel office. I didn't get good pictures of the wedding, so I won't post any. Next time I will remember not to breathe while trying to take a photograph.

Yes we did gamble, but not much, and we didn't lose money.

A quick mention of Fremont Street in downtown Vegas. It's hyped for the light show, but if you go, I would suggest being under 30.

While we were at one end of the U.S., our son was at the other, in Kentucky's Mammoth Cave Park, camping. He said he liked it but the pictures tell a different story. He did like a hill of moss-covered rocks, dubbed the "Slip and Die" by his fellow child companions.


The family was gone a total of 10 days. Too long in my book. I'm glad to be home, at least for awhile.



Thursday, July 23, 2009

Mad World

I'm posting the lyrics to a song by Tears for Fears, because is sums up my feelings at this moment:


All around me are familiar faces
Worn out places, worn out faces
Bright and early for their daily races
Goin' nowhere, goin' nowhere
Their tears are fillin' up their glasses
No expression, no expression
Hide my head I want to drown my sorrow
No tomorrow, no tomorrow

And I find it kind of funny
I find it kind of sad
The dreams in which I'm dyin'
Are the best I've ever had
I find it hard to tell you
'Cause I find it hard to take
When people run in circles
It's a very, very
Mad world, mad world
Mad world, mad world

Children waitin' for the day they feel good
Happy birthday, happy birthday
Made to feel the way that every child should
Sits and listen, sits and listen
Went to school and I was very nervous
No one knew me, no one knew me
Hello teacher tell me what's my lesson?
Look right through me, look right through me

And I find it kind of funny
I find it kind of sad
The dreams in which I'm dyin'
Are the best I've ever had
I find it hard to tell you
'Cause I find it hard to take
When people run in circles
It's a very, very
Mad world, mad world
Mad world, mad world

And I find it kind of funny
I find it kind of sad
The dreams in which I'm dyin'
Are the best I've ever had
I find it hard to tell you
'Cause I find it hard to take
When people run in circles
It's a very, very
Mad world, mad world
Mad world, mad world
A raunchy young world
Mad world

Sunday, July 19, 2009

The Recession Blues.

Did I get a B.A.
Or was it just a bare ass
Did you get a B.S.
Or was it just bullshit
It don't matter what you learned anymore
Your skills aren't needed, so were showing you the door
That's the recession blues
Your company don't make enough money so start singing
The recession blues

Without a job
I hope you don't get ill
have a heart attack or cancer
because if you do, you'll have to foot the whole bill
That's the recession blues
You have no insurance but have the
recession blues
You'll die before you see a doctor, so sing
The recession blues

All these houses going up
with no one in them
All these going out of business sales
and no one to sell them
People holding signs saying
"will work for free"
Me. I'm on the street corner singing
now sing it with me
I've got the recession blues
hubby just got laid off
I have the recession blues
He has them too
We never thought this would happen
It could happen to you
Don't get the recession blues

Thursday, July 16, 2009

the artificial woman-pt 9

Off Rainbow went to the big bad world of college without so much as roller skating with a boy. University overwhelmed her on so many different levels. She might as well have been a bug on the wall of the big classrooms she sat in as a Freshman. And professors doled out homework as if theirs was the only class she had.

She had nothing but time on her hands to study interesting topics like Western Civilization, Literature and other classes that would prepare her for her major--Journalism. But where were the boys? Or men? Something in between? This topic had become perhaps too important to Rainbow, because of her lack of experience. Not that she was out to cause trouble, but there was a small part of her that wanted to have something to talk about in the metaphorical locker-room.

One afternoon, Rainbow and Lynn, her sister who was also her roommate, went to pick up Lynn's friend Ned to carpool home for the weekend. Ned's friend John actually spoke to Rainbow with unusual enthusiasm. But was John like James and Scott from high school and just playing some kind of joke? Rainbow pretended not to care.

Eventually Ned told Rainbow that John "liked" her. There was that word again-liked. Rainbow didn't believe Ned.

But then John called. He said he had bugged Ned for the number. Rainbow still thought this must all be a joke; Even that Ned and Lynn were putting John up to this to get Rainbow out of their hair.

It wasn't. John invited Rainbow out. But Rainbow found out that John had a girlfriend going to another school. Still he persisted to the point where Lynn gave Rainbow a talk about the dangers of HIV, and called the parents about John and Rainbow, as if there were actually news to report on that front. Rainbow had to tell her parents that she hadn't "done anything". She would "do something" between her birth and age 42, but at that time(age 18) had not.

Rainbow joined the only conservative paper on the very liberal University of Oregon campus. It was there that she met her first love Duane. He was a typical young redneck who hunted and liked to make farting noises, but Rainbow forgave him these quirks(for awhile) because he paid her attention. This was until she went to visit him over Summer Break, and she became disgusted with his hobby if shooting the raccoons that got into the dog food dish. Again. Redneck. Redder than blood.

Sad how the heart can blind one to what is straight ahead.

Other guys graced Rainbow with their attentions, if not genuine affections, Will the Drunk, Frank the Stoner. They all made Duane the Redneck look good.

Then she graduated college and left that world behind too.



Wednesday, July 8, 2009

The Artificial Woman-pt.8 --crimes and misdemeanors

It was hinted at in grade school, but when Rainbow entered middle school, it became evident that being a short and pudgy girl is a crime. She certainly didn't represent the only child in history to be picked upon, but she took negative comments to heart. If enough of her classmates implied that short+ pudgy=ugly, then that's how Rainbow thought of herself.

For example, as a 7th grader, Rainbow was waiting quietly outside a classroom, when Mr. and Miss Powercouple sauntered by. Mr got his face right into her space and oinked like a pig, causing Mrs. to burst out in laughter (what a cool boyfriend, teasing the little underclass Fat Girl). This event represented one of the most important lessons she would learn--Rainbow=pig=unfit to go out in public. And middle school (junior high) was just beginning.

Rainbow actually feared a little bit for her safety at one point, when she opened her locker and found a note, which contained an especially unflattering picture of a Fat Girl. The note read:

Dear Rainbow,

You are so fat! Why don't you stop eating and go on a diet. We understand it's hard, you can't help yourself. You're fat.

I'd watch yourself Rainbow. We know you walk home, and tomorrow we will beat you up. Gonna cry now?

The same day she got the letter, Rainbow walked home without incident. She was mostly disturbed that her privacy had been violated. Rainbow told her parents, and told a school counselor who she thought might be behind the cruel note. After that no more notes. Rainbow still wonders if her suspicions were correct.

Then in high school, without provocation, a boy named Scott, who sat by Rainbow in science class, told her to remain behind, because his friend James allegedly wanted to ask her out. Although she knew Scott (and James) were joking, they persisted. They played the same joke on another Fat Girl, too. One wonders if Scott and James would have found their jokes so amusing, had they known that Rainbow was born with her appearance, just like anyone else.

While it seemed everyone else was enjoying "normal" teen activities like dances, boyfriends or girlfriends, parties, and the like, Rainbow watched from the sidelines from her "abnormal" world. She learned that there is such a thing as attracting attention for all of the wrong reasons.

One summer, Rainbow tried eating no more than 1200 calories a day. Alba 77 shakes counted as meals, and it was not uncommon for her to eat ice cubes. Meanwhile, she followed an exercise program her cousin found in Reader's Digest. This program included rowing for about 30 minutes, running in place, sit-ups and push-ups.

At last, her final year of high school, Rainbow came back looking "normal" for the first time in her life. Classmates noticed that she had lost weight, and folks who would never give her the time of day, were now pretending that they liked her all along. It turns out Rainbow was wrong about the notion that being too thin, and wearing makeup were the keys to getting the attention from the opposite sex she so desperately wanted.

When it came time form the Senior Prom, Rainbow invited, and was rejected by two different
boys. Feeling sorry for her, her family paid Rainbow's sister's boyfriend to take her. It would
take college for boys/men to find her. No one at college was aware of her Fat Girl history.

Wednesday, July 1, 2009

What They Put Up, After They Paved Paradise

As of this writing, there are now four business set to open at The Village on Scholls Ferry, the strip mall at the bottom of the hill on which we live. I complained in an earlier post about the strip mall, and at least one of my complaints remains--it's location.

In what I believe is a misguided attempt to ease congestion around the mall, developers have done just the opposite, creating a very narrow roundabout, at which nearly no one yields, and school buses struggle to navigate.

However, in the interest of "research", I visited one of the first shops to open there, a nail salon called Moda. Here were the positives about my experience:
  • I could walk there.
  • I sat in a chair that massaged my back as my toes were being scrubbed and painted.
  • Getting both a pedicure and manicure there was cheaper than where I usually go.
  • The staff was friendly and did a good job.
Possible negatives:
  • The place wasn't that busy when I went, and nail salons seem a dime a dozen, so I don't know if Moda will stay afloat, or if it's presence will help the property values of the neighboring cluster of houses.
  • If the business does succeed, there still is the issue of congestion and noise, and how that might affect the neighboring homes.
I suspect that those who live nearby will be happy when the mall is fully operational. For now there is a lot of construction noise, and not much business yet.

Next, I plan to try the coffee shop at the "village".

The Artificial Woman- Pt. 7-doctor! doctor!

Tests needed to be performed on Rainbow to see of she had any of the heart or kidney problems associated with TS. She would also need hormones to become a woman. Otherwise, she would simply age rapidly, looking like a child.

To check the state of her heart and kidneys, Rainbow underwent an ultrasound. Doctors looked for "horseshoe" shaped kidneys, any abnormalities in her heart, and any possible sex organs. The test was surprisingly unpleasant, mostly because she had to be full to the brim with water, but not pee, in order to get good pictures. This would have been okay, if not for the fact Rainbow was VERY ticklish. The sliding of the camera over her greased body seemed like torture.

Midway through the test, Rainbow was granted permission to empty her bladder, about half-way. Then back to business.

Thankfully, the ultrasound did not show any abnormalities with her kidneys. Her heart looked normal, too, except for being oddly shaped. It also further confirmed that she had no ovaries. Her uterus (if she had one) didn't show up very well. An ob-gyn would check that out.

Turner Syndrome is rare enough that it is difficult to find a doctor who knows how to factor that into treatment. When it came time to see a gynecologist who would prescribe Rainbow's hormones, he was used to doling them to menopausal women, and not 13-year-old girls.

Similarly, as a 13-year-old, Rainbow was not prepared to be poked and prodded by hands and scissor-shaped instruments. A nurse was present as the doctor examined her thoroughly and set up a regimen of pills to help her get her boobs and period. Strangely, Rainbow was looking forward to this, erroneously thinking that once the pills kicked in, she would look more "normal" like her sister. The pills could only do so much, though. And Rainbow left the doctor's office feeling violated.

After about a month of taking the hormones, "Aunt Flow" arrived, and Rainbow's mom, Kay, proudly announced this news to Bob, who proceeded to make inappropriate jokes to his daughter, thinking that he was somehow being encouraging.

Eventually Rainbow would wise-up to the absolute pointlessness of bleeding every month, but at the time, her life as an artificial woman was just beginning.

up next: school days-crimes and misdemeanors



Monday, June 29, 2009

The Artificial Woman-pt. 6--The real girl becomes an artificial woman

The fact that Rainbow was different from other girls was not lost on her family doctor--a country doctor with a hunch.

By the time Rainbow had turned 13, she still had not even started puberty--no growth spurt, no menstrual cycle, no breasts, no anything that would be of any interest to a boy going through puberty. These facts combined with Rainbow's puffiness, bad eyesight, constellation of moles over her body, and overall physical anomalies gave her doctor pause.

Without explaining why, he ran a blood test during a routine checkup. Rainbow's fear of all things with needles had not subsided, still she submitted to the mystery blood test.

When the results of the Mystery Test were in, the doctor called Rainbow's parents and asked them to come in for a chat, sans their daughter.

Not liking the unknown, Rainbow fussed and tried to determine what was so wrong with her that her doctor had to have a private conversation with her parents. When her parents came home they told her: A blood test called a karaotype revealed a rare genetic disorder called Turner Syndrome, and as a result, among other things, Rainbow would not be able to bear children, and would need to take pills (hormones) to gain "secondary sexual characteristics".

"But mom and dad," she said, "I like guys."

Rainbow's mom, a nurse, broke it down for her. "Secondary sexual characteristics are what make you a woman on the outside," she explained.

As to the what and why of the condition, Rainbow studied a booklet given to her parents called, Good Things Come in Small Packages. On the cover, was a sketch of a girl who had a very similar shape to Rainbow--short, soft shoulders, puffy hands and feet with arms sticking out. The book said that about 1/2000 girls have TS. In general, girls with TS have 45 chromosomes instead of the standard 46. Being only 13, not all of it sank in. Thankfully, the book had a question and answer section:
  • Are girls with TS retarded? Answer: no more than anyone else (whatever that means);
  • Are girls with TS promiscuous? Answer: no (presumably this question was asked because nothing says, "pork away pal!" like a girl who can't get pregnant);
And the book went on about some of the potential health problems associated with Turner Syndrome, including heart and kidney defects. There were two options available to Rainbow and her parents for treating TS and helping her get her boobs, period and maybe even height. The boobs and period could be covered by taking a mix of estrogen and progesterone for most of the month, at the end of which, a period (monthly visitor/horror, Aunt Flow) would appear, and Rainbow could experience the joys of being "on the rag".

It turns out these hormones would add some inches, but not many to her height. In order for Rainbow to grow to a "normal" height, the doctors offered up the idea of taking male hormones (androgens).

All of this confused Rainbow, so her parents took the lead and decided "yes" to the period and boob hormones, and "no" to the male hormones, as they could endow Rainbow with male secondary characteristics, such as a deep voice and facial hair, that wouldn't go away.

And all of this was shocking, but the part of the TS news that bothered Rainbow the most was the fact she would never bear children. She thought that's what all girls grow up to be--mothers--all girls except for her.

up next: ultrasound and a visit to the "crotch browser".

Friday, June 26, 2009

The Artificial Woman-pt.5 (eating=balloon belly)

As far as Rainbow's performance in school was concerned, her academic prowess was overshadowed by her behavior, and apparent lack of motor skills. For example, even though she was consistently reading above grade level, she didn't have good comprehension of what she read, according to her report cards. Her teachers also commented on how sloppy her writing was, and how she bothered other students, and how other students bothered her. "Her feelings get hurt too easily," was a popular refrain.

Yes, indeed they did, especially when she started to eat "people food".

Big mistake!

For the longest time, Rainbow ate nothing but cereal and toast. This had to change once she started school. Her first love was peanut butter, so her mom first made her peanut butter crackers, and then peanut butter sandwiches for lunch. She refused to eat "hot" lunch, though. In fact, one time in 3rd grade when the teacher made Rainbow eat her warmed-over canned spinach, she threw it up.

The teacher never made her eat spinach after that.

Rainbow's parents were happy when she would eat, since she normally wasn't interested in food. They didn't mind when she had seconds of burgers, pizza, spaghetti and the like.

But Rainbow wasn't growing, so she gained weight, starting at age 10, when she should have started growing up, and not out.

As kids will do, they noticed Rainbow's explosion in size. Frankly it was hard not to notice her. She was shorter than her classmates, wore glasses that could have substituted for binoculars, and was turning pudgy. Both boys and girls called her "balloon belly".

This is not to say Rainbow didn't have friends. She provided much entertainment due to her lack of impulse control, talking out of turn, making jokes. She was "funny". Plus, even in elementary school, some boys were starting to "like" girls. If Rainbow befriended a girl a boy liked, she became a conduit between her friend, and the boy who liked her friend. Often Rainbow "liked" the boy who "liked" her friend, but she was happy for whatever attention she could get.

Case and point: In 3rd Grade, there was a boy named Scott. Scott liked Rainbow's friend Julie. He asked for Rainbow's number, so he could ask her questions about Julie. This might have offended other girls, but it thrilled Rainbow. Just by virtue of being Julie's friend, Rainbow earned a kiss on the hand and cheek from her favorite boy in class. It didn't matter that it was Julie he "liked".

Rainbow was giddy. She came home after school the day Scott kissed her, and unlocked the door to her house with one try. Kissing a boy had evidently released some courage and confidence. Throughout grade school Rainbow would worship the ground Scott walked on. Scott would worship the ground her friends walked on. Still, she would do anything to try to impress him, including running down the hall so fast, she fell, chipped her teeth and split her lip. Yes, you could compare Rainbow to Olive in Little Miss Sunshine, both in looks and spunk.

But the older she got, the more she, and everyone it seemed, noticed she wasn't like her friends, and the the more her spunk dwindled.



Tuesday, June 23, 2009

The Artificial Woman-pt. 4

It was sometime in First Grade that Rainbow needed surgery on her ears. This was discovered after several visits to an ear, nose and throat specialist, where her mom would talk with the doctor, and she would sit there with eyes glazed, looking at charts on the wall, and complicated machines.

She did however manage to hear the word "surgery" and went into panic mode, much to her mom's annoyance, as once Rainbow was in a panic, she didn't get out.

It was explained to Rainbow that because of her frequent ear infections, doctors were going to put in tubes to help fluid drain from the ears. And while they were at it they would take out her adenoids, with the goal of preventing further bad infections. Too many infections would cause hearing loss.

She stayed overnight at the hospital in a room with a boy who was even more afraid than she. A nurse came by taking dinner orders. Rainbow's dad was there and ordered toast for her. Her mother was in nursing school and couldn't make it.

When the toast came, Rainbow deemed it too dark, plus it was cut in half. She selfishly brushed it aside.

Throughout the night a stream of nurses came in, taking vitals. Rainbow didn't sleep well anyway, but it seemed like the nurses would arrive just as she was finally about to drift off.

Then, the next morning, surgery time--a shot in the butt and a foul-smelling mask and Rainbow was on her way to la-la land. She woke up unable to swallow without pain. Orange juice was requested and denied, but a Popsicle provided much needed relief.

Rainbow was surprised at how long the pain lasted. When she got home from the hospital, she immediately asked for toast.

Then she tried to swallow. Not easy, in fact, impossible with her throat dry, swollen and painful. She also had to keep her ears from getting water in them. Her mom washed Rainbow's hair in the sink, being careful to avoid the ears.

All told, she maybe missed a week of school because of the surgery and recovery. Whilst away, her classmates had made get well cards for her, and her teacher had finished her art project--an ashtray with a smiley face.

No doctor it seemed even knew about Turner Syndrome, let alone think Rainbow's problems with her eyes and ears were related to it.

Until she turned 13.



Monday, June 22, 2009

The Artificial Woman-pt. 3

Rainbow slept little. In the summer she'd wake at the crack of dawn, hit the backyard swings, and turn a portable radio WAY UP.

Too bad her parents slept with their window open.

She knew every song from the am radio, such as Marvin Gaye's "What's Going On", and "Never Can Say Goodbye", by the Jackson Five. Rainbow listened and swung happily, as ponies in the pasture chased each other, and crop dusters swooped overhead.

In the evening Rainbow would listen to her father's albums. She didn't have much choice. He played his music loud too.

He would put on Led Zeppelin II, and quiz Rainbow about the song.

"Kool-Aid," she say, thinking the words to "Whole Lotta Love" were, "You need Kool-aid."

And so began Rainbow's retention of all things trivial, which lasted until 2006, when she had to have part of her brain removed.

Because she wanted to be so much like her older sister, she was excited about going to elementary school at Mooberry Elementary in Hillsboro.

Rainbow's favorite activities included swinging at recess and playing instruments. She had a hard time with arts and crafts for some reason. Fortunately Rainbow made some friends, some of whom remained her friends through High School.

So Kindergarten went well. At that age it's okay to be a little wild and crazy. Plus it doesn't last a whole day.

But First Grade was another matter. Two problems existed because of Rainbow's unique personality.
  • At that time, she didn't eat anything but toast and cereal (and the toast had to be white and spongy, and NOT cut; cereal had to be Cheerios);
  • Thinking she was at the height of elementary school fashion, Rainbow HAD to wear patten-leather shoes, and would almost miss the bus, because she had to stop and brush the smallest speck of dust off of them.
So Kay, Rainbow's mom, suggested this may be a problem, since toast was not offered as part of the school lunch program.

As a matter of fact, Rainbow went on a hunger strike and won. Kay ruled that Rainbow could have toast once a day, and milk, but otherwise would have to eat "people food".

So Rainbow had her one meal of toast and drank milk whenever she wanted, but did not eat "people food".

She would eventually eat "people food," but would discover that eating had a natural consequence.