Thursday, April 27, 2017

Pondering Superpowers

I love to ponder the BIG questions.

I’m made of stardust. That guy huddled in the corner of the building with poop stains on his pants is too.

I’m connected through time in an unbroken line from the first life form that zinged into existence.

What are the odds that I'm sitting here, in this exact point in the spacetime continuum, wearing these clothes with these freckles on my nose?

Did bacteria cultivate "higher" life forms as mobile housing units?

How many times have the water molecules I’ve just sipped passed through another lifeform?

Do snakes creep themselves out too?

If I could choose a superpower what would it be?

Today, I ponder superpowers.

Why, invisibility of course—hands down. Or are they up? You don’t know because I’m invisible…muhuhahahaha...

Seriously, Amy? Not flying? Not ice, fire, super-strength, command of the Force, weather, shape-shifting, breathing underwater, speaking with animals?

Those powers would be awesome too. I could use the Force to keep my dog off the neighbor’s lawn. I could use my laser vision to vaporize her poop. I could shapeshift into a monkey to get my kid’s kite out of the tree. I’ve always wondered what a raven has to say. Flying—so awesome.

Invisibility wins it all though.

When I’m in the store in my scrubby clothes, carrying a basketful of tampons and chocolate bars, and I see the cute boy from high-school, all grown up with his lovely family. Boom-invisible.

Charley and I go to a Cubs game at Wrigley Field. What's that odd flattening of the grass out in Center Field? Is it a micro-wind? Nope, that’s me rolling around. I’d probably watch the game perched on the dugout. Might sneak in the locker room right before game-time to hear Maddon giving the guys the game strategy.

At a concert, I’m on the stage rocking out! Am I naked? Maybe…

Long line for the Ladies' Room and the Men's Room is empty? Invisible.

Next time I go fishing in the ultra clear Mckenzie or Metolious? Invisible.

I’d get some amazing wildlife photography.

Step out of the shower and there’s no towel and all the windows are open. Invisible.

Shower at the campground. Invisible.

Changing from swimsuit to clothes at the swimming hole. Invisible.

Out for a run and see a creeper being creepy. Invisible.

Out on a long run and nature calls. Invisible.

All of high-school. Invisible.

Kids are playing together peacefully and don’t want to break the spell but need to cross the room. Invisible.

A pristine lake that begs to be skinny-dipped in that also happens to be surrounded by a packed campground. Invisible.

Think of the pranks and shenanigans invisibility would facilitate! No one would be safe! Muhuhahaha!

Ah! To be able to move through the world and this life in complete confidence and anonymity whenever I so choose. The things I could experience. The truths to discover. The fun to be had!

So yeah, invisibility wins it all.

Conversely, it would also be awesome to be able to dial up my visibility when I want to be noticed. I’m open for a shot on the basketball court—see me! I lose my kids in the store—see me! I spot an old friend across the field—see me! When my girls are on stage and they’re looking for me in the crowd—here I am! Pick me, ooh ooh, pick me!


Amy. Oh, hi. I didn't see you there…


What superpower would you choose?


Wednesday, March 8, 2017

Hair Day - An Inside Look at My Outward Appearance

On my way home from a doctor appointment, I sailed through light traffic. I had no other obligations and plenty of time before my girls get off the school bus, so I took an early exit and decided to see if I could get my eyebrows done and my hair cut. It had been about six months since my last haircut and I was looking shaggy. Charley and I have a fancy dinner next weekend, and it would be nice to be less shaggy.

But I don’t wanna.

I gave myself a pep-talk, “I’ll just pop in, and if there's no wait time then I’ll just do it. Get it done. If there’s a wait, then I’m off the hook.”

OK. I can do this.

I go in and the stylist is elbows deep in a young woman’s long hair applying something thick and noxious.

Yes! Colorings take forever, she won’t be able to help me.

She greeted me and called for reinforcements. A woman with long brown hair, about my age, emerged from a secret door in the back somewhere and asked me what I wanted to have done.

Darn.

“A brow wax and cut please—if you have time.”

“I’m booked up all day, but I can fit you in right now.”

Ug. Perfect timing. 

I sat in a chair she indicated and she played with my overgrown locks while I scrunched my reflection's face. She asked me what I’d like. I’ve always handled that question poorly. I’ve always wanted the stylist to say, "I know exactly what you need." And just do that. I don’t care. Like really. I don’t even know what style looks best on a 39-year-old woman with an oversized forehead. So as usual, I loft a few half-sentences out there, “A trim? Maybe long layers? A bob cut?” If you were reading a list of peeves as written by a stylist, I’m sure my response would top the list.

I don’t know, just make me look better than I do now. I’m not a fashionable person. You are. Save me from myself.

We settled on a trim.

We headed over to the washing station and I put my neck in the guillotine lunette and she prepped to wash my hair. The same hair I washed three hours ago in the shower.

“Will you have time to do my brows today too?”

“Oh, yes. Maybe I should do that first.”

“Oh, good idea.” For some reason, they always go for the hair first and then back to the sink afterward for the brows. It's faster if they do it when I'm already there. Fast = good.

The stylist was not chatty, and my thoughts turned inward.

I’ve always resented being groomed.

Thanks Karla. ♥
I like having been groomed, but I have resisted the process for as long as I can remember. As a kid, I was usually allowed to run feral, but on school days, and for church and holidays, grooming was inflicted upon me by my step-mom, Karla. In my elementary school years, my step-sister and I sat on chairs in the kitchen. Karla would then lift our hair from behind the chair and set to work. My hair was very long and fine and she brushed it with snarls that matched those in my hair, all the while cursing my rubber neck. Then Karla parted my hair down the middle and put it in pig-tails. The kind that the boys in line behind me would use as horse reigns and snap them with a, "Hyah!" On fancy days, she tied in ribbons.

I endured it all in stoic silence. At least that’s how I remember it. Today I’m certain I was as whiny, loud, and obnoxious about the procedure as my girls are when I brush their hair. Must be a Karmic circle thing. I know I’m just as snarly as Karla was about it. I ask them daily, in all earnestness, "Can we just cut it off?"

Looking back, I'm eternally grateful for Karla’s ministrations. My social position in school was precarious enough as a gingery mouth-breather. I didn't need all that topped off with chronic bedhead.

The stylist's breath is heavy on my face as she applies warm wax. She presses on a small cloth strip.

Brrrring! Brrring!

“I’ll be right back.”

She talks on the phone and flips through the appointment book. I lie on my lunette, experimentally raising my eyebrows to watch the shadow of the cloth strip flash up and down.

Zip!

Now we’re cooking.

Before
Warm wax, strip, zip. Examine. Adjust. Repeat. Tweeze. Tweeze some more. Breathe in my face. Ignore her tummy rumble. Zip. Tweeze. Done. Whew.

The stylist hands me a mirror. Ah yes, much better. My wild Scottish eyebrows have been tamed.

After
During my awkward teen years, one of my dad's girlfriends once told me, “Amy, one of these days I’m going to pin you down and pluck your eyebrows.”

I was mystified. Was something wrong with my eyebrows? Had she asked me before and I refused?

I was interested in ways of looking less awkward. Had she showed me what a difference it would have made in my overall appearance, I would have gone willingly—no pinning required.

Still in the guillotine lunette, next came the hair washing... Soap and scrub. More soap. More scrubbing. Like a lot of scrubbing. More scrubbing. I begin to wonder if my scalp is bloody.

Rinse.

Process repeat for the conditioner.

Rinse.

Some kind of leave-in conditioner is applied

The toweling is as vigorous as the scrubbing and pulled hairs send zings down my nerve pathways: a ping into my shoulder, a ping into mid-back. Nerves are weird.

As a youngster, we had to take baths two kids at a time. There were four of us (me, my brother, Reed; step-brother, Lew; and step-sister, Regina) and if we wanted to be finished with the baths before Rapture, some sharing was necessary. Bathtime was playtime of course, but at some unspoken point, it became a race to the finish. There were always two towels available; one being more desirable than the other. The challenge was to transition from play to washing without tipping off my bathmate. I had to be cool, smooth, unhurried, then boom! "Huh, guess I’m all done. Oh look, I think I’ll use this towel."

I rarely succeeded, and if skipping a step was necessary to win, I was ratted out, “Amy didn’t use soooap!”

“The point of taking a bath is getting clean. Get back in there and wash!...with soap!”

No honor among thieves—or kids.

Smaller towels were better for wrapping your hair anyway… And we girls always did. We turned ourselves upside down, laid the towel over the nape of our necks and with a wrap, twist, flip, the wet-hair turban was applied.

The stylist moved me and my wet be-towelled head back to the hair cutting chair facing a mirror.

As she squeezed the stray molecules of water from my hair, I felt a surge of gratitude that she wasn’t chatty. I’m fairly quiet, so chatty stylists will fill the vacuum with endless stories, anecdotes; oftentimes incredibly personal stuff. They will sometimes get so involved in their stories, they’ll stop working altogether for the benefit of gesticulating or pacing around as they speak.

The combing done, she twisted some of my hair up and fixed it with a clip. She combed some of it straight and began to cut. Yay! She is exceptionally nice. She is meticulous as well. Hair is important to women...well, not all women. Once I went to a barber shop thinking, barber shops are for guys so they’ll be fast. Nope, it was worse, the woman who helped me did a great job on my hair but was super chatty. My kids were taller by the time I got home. I once tried to convince Charley to trim my hair. He wouldn’t do it.

My permed chick-mullet.  You should
have seen me first thing in the morning.
Karla cut our hair for us at home and did a really nice job. She was fast. She was not chatty. Then years later my dad traded services with a woman, Leilani, who worked at the local hair shop. He’d take her brothers on a drift boat trip down the river, she’d cut me and my brother’s hair. She never asked me what I wanted, she just took the modern style and applied it to me. I had perms. (They never lasted over a week.) I had a chick-mullet. I had a permed-chick-mullet.

In my uber self-conscious teen years, I decided that I no longer wanted stylish hair, I wanted long hair and bangs. They blended in better with the wood paneling at my high-school. So, I stopped going to Leilani, and instead, I went to the mall SuperCuts 50 miles away “in town” for trims and a little shaping once or twice a year…

Sometimes my bestie and I would just trim each other's hair.


The hairstyle that I wore throughout high school.
I call it wood panel camouflage cut.
My stylist was done cutting and handed me a mirror. I pretended to look it over carefully as she swiveled the chair around. We are both happy. I’m ready to bolt out of my seat for the door.

Then she pulls out the blow dryer. I open my mouth to protest, but then I think, ah what the heck, I’ve been here this long, a quick blow-dry and my hair will be nice and sleek all day.

I should have protested. She dried my hair layer by layer by layer.

Maybe I just need one of these.
The blow-drying still going on, I can’t help but keep watching the clock and thinking of all the other ways I wish I was spending this precious kids-at-school time.

The dryer clicked off. Done. Finally!

Then some pomade. Mmmm smells nice. I have to “hold still” for another few moments while she gets some Freeze hairspray. I get sprayed. My hair feels plasticky.

Done. HOOORRRAY! I pop out of my seat at little too fast and hand her my apron and thank her. I really do look better. 

She rings me up and I’m so grateful to be free (and I feel slightly guilty for my internal ranting), so I add a generous tip to my bill. She says, "Thanks. I really appreciate that."

I said, “You’re welcome.” and internally added, And I’m so glad to be out of here

Less shaggy, right?
I close the door to my pickup and shake the hairspray bonds free and my hair feels silky and sleek.

I go about my day. The kids get home. Charley gets home. I go for a run. We have dinner. Charley and I exchange days, I tell him about my doctor appointment and mention that I got my hair cut.

“Oh, I’m sorry. I didn’t even notice.”

Charley looks genuinely abashed.

“That’s OK. It’s no big deal.”






Hugging Uncle John wearing Karla's pigtails.  



Tuesday, December 27, 2016

Genomics Revisited the Quest for my BRCA

Rosalind Franklin: the scientist who used
X-ray diffraction images to reveal 
the structure of DNA.
My first foray into exploring my genome was through the Genographic Project. Instead of whetting my curiosity, it lit it on fire. I’ve been reading articles and books, and I dream of one day visiting some of these places. (Read More)

My second peek into my genome was for practical purposes. I needed to know whether or not my boobs are going to try to kill me—a question that has haunted me since adolescence. My mom and her mother were both diagnosed with breast cancer in their early forties. My mom was an only child, as was my grandmother. I have no sisters…so 100% of my maternal, female relatives have had breast cancer. Small sampling group, but still—100%.

Breast cancer before menopause is particularly indicative of a genetic issue. There are two well-known genes related to breast cancer BRCA1 and BRCA2 (BReast CAncer). These two genes contain instructions for building proteins that repair or kill cells with damaged DNA in the tissues of the breasts and ovaries. Mutated genes produce weird proteins that can't carry out their jobs properly. If cancer cells appear, they are more likely to grow unchecked.

According to Cancer.gov, 55-65% of women with mutated BRCA1 genes will develop breast cancer by age 70, and/or 39% will develop ovarian cancer by age 70.  The BRCA2 odds are better at 45 percent for breast cancer and 11-17 percent for ovarian cancer by age 70.  (Source)
BRCA1 Protein
Got any damaged cell DNA
for me to repair?
(Wikipedia)

These are all odds. It's all ifs and percent risks—not a diagnosis.

OK. BRCA genes don't cause cancer. I get it.

My doctors and I have discussed genetic testing in depth since I'm approaching the age my mom and grandma were when they got sick. I was on board with the testing, so my doctor sent in a referral and told me where to call.

I put in a call.  A pleasant voice from the Genetic Testing Department of my local hospital explained that prior to being tested, I would meet with a genetic counselor who would chart my family history, and explain to me how genetic testing works. That part costs $250.

Oh, wow, um, OK, go on.

Then I would be tested by a certified lab costing somewhere between $2,000-$5,000.

WTF—a $3,000 price range? Is there a wheel to spin? Wow, OK.

To get the results, I would be required to meet with my assigned genetic counselor for another $150 to explain the implications of my results.

Pleasant Voice Lady asked if I would like to schedule my first counseling session.

I think I'm going to check with my insurance company first.

So I did, and Annoyed Voice Man said, “Nope.”

See! It's right there. Just tell me what it says!
WTF! For $150, science told me that I have Inuit ancestors from Siberia, and that 1.1% of my genome is Neanderthal in origin, but it's going to cost me upwards of $5,000 to find out if two well-known genes can do their job!? Maybe...

Knowing this information already existed due to my participation in the Genographic Project, I went on a quest to get to it. The FDA boob-blocked me the whole way. The Genographic Project referred me to myFamilyTree.com, who is their partner in the project. I transferred my results and looked into the health information they provide. Here is a list: What are Factoid tests? What will I learn?

No cancer results? What? They can tell me if I have the Warrior Gene but not the state of my BRCA1 or BRCA2? I emailed and asked, they said they replied the FDA prohibits them from giving medical advice. Since when is information synonymous with advice? Doesn't advice imply guidance? I don't want advice; I want data.

Humph.

Next on my list was 23andMe. They provide genetic health reports too. They can tell me if I carry the gene for Cystic Fibrosis, but again, no BRCA1 or BRCA2. I emailed them to make sure I didn't miss it, and they also replied that the FDA prohibits them from giving medical advice.

Grrr!

I found a few more services, Ancestry.com, and myHeritage.com…FDA says NOPE!

I called bullshit.  In June of 2013, the Supreme Court ruled that naturally occurring genes could not be patented, meaning testing for a specific gene couldn't be patented either. Score one for the old guys in robes! This should have led to a rapid drop in the price of genetic testing, but that's not what happened.  The FDA made sure of that.

This led to a FaceBook vent about the injustice of the FDA protecting the monetary interests of those in the medical profession by withholding information that belongs to ME about MY DNA that is a part of MY BODY. Worse, they are blocking this information under the pretext that the average person is too stupid to understand that a defective gene is not a diagnosis and might do something rash… Like what, get a back alley breast removal? Apparently, only the wealthy deserve to know, whereas us plebeians should just get sick and die and decrease the surplus population. (Apologies to Dickens.)

A reply to my FB post from a caring friend brought me back from Angry Injustice Town. Being involved in a medical field, my friend offered some insights and did some substantial research into the topic. During which, she found Color Genomics. Color is a new online genetic testing service that circumvented the FDA blockade by having an in-house doctor order the test, review the results, and offer counseling services.  All of which is included in the $250 price tag. The FDA still blustered when Color launched their service, but had no way to further derail their mission: “Half of the women who carry mutations of these genes don't have the family history that would allow them to get tested,” says Gil. [Color CEO] “This information can help everybody, not just the select few who can pay for it or have insurance coverage.” (Source Article)

As it happened to be Breast Cancer Awareness month, Color was offering a $25 discount. The genetic test would return results about my BRCA genes and 28 other genes known to be associated with hereditary cancers, e.g., melanoma, colo-rectal, and stomach. Here's a full list, 30-Gene Test for Hereditary Cancer Risk, which includes many lesser known genes related to breast cancer as well.

The whole package was less than what was required for my first counseling session!

I ordered the test and submitted my doctors' contact information so they would receive a copy of the results. The box arrived, I followed the directions and popped it back in the mailbox. A few days later, an email arrived stating that the test was received and would be analyzed. Then a week or so later the results were in. Before I even had a chance to log in to see them, my OB/GYN doctor called me to let me know he had received the results. Happy news—my BRCA genes were fine! I logged in and took a look, all 30 genes are happy and productive.

OK. Wow. That was easy and awesome.  This test saved me three doctor appointments and somewhere between two and five thousands dollars.

So Amy, what were you going to do if the test reported a mutation?

Excellent question! My plan was to share that information with my doctors and do what they told me to do, then go home and fix dinner for the family.

I needed to know.

I'm not totally off the cancerous hook. My family history component of cancer is still there. At first, I wondered how something related to family history wouldn't be revealed in my DNA. Then after some reflection, I reasoned that 3.3 billion base pairs is...well…a lot. And we are only starting to understand our genome—there are infinite ways the genes could play against each other. Also, there is a nurture component; if I mimic behaviors that led to my mom's cancer, I elevate my risk factors. So based on my mom and grandma's cancer alone, I will need to continue getting mammograms et. al. even though I am not yet 40 years old. Fine with me. Momentary discomfort is better than being dead.

Also, since all females get two X chromosomes, one from each parent, I have a 50-50 chance of passing a bad one onto my girls, even though it didn't express for me. Luckily they get an X chromosome from their dad too, giving them a 25% risk of inheriting a faulty gene from me. (If I even have one, the only way for me to know would be to test my mom.) When they are grown, it'll be worthwhile for them to get tested too.

To the CEOs of Color:
Thanks Gil.
Thanks Laraki.
You guys rock.


Further Reading:

Press about Color:

Genetics - BreastCancer.org
Excellent breakdown of the genes associated with breast cancer and how they function.

BRCA1 and BRCA2: Cancer Risk and Genetic Testing - Cancer.Gov