Sham El Nessim

Since we'll be traveling, we're going to entirely miss Easter this year and I'm a little blue about it. No egg hunts, no egg dying, no delicious Easter candy. I was feeling pretty down until I talked with my dad and he informed me that the day we arrive in Cairo happens to be Egyptian Easter! Well, not really Easter but a national Egyptian holiday called Sham El Nessim (or the Smelling of the Zephyr) which celebrates the beginning of Spring.

From Wikipedia:

In his book, Manners and Customs of the Modern Egyptians, Edward William Lane wrote in 1834:

A custom termed 'Shemm en-Nessem' (or the Smelling of the Zephyr) is observed on the first day of the Khamaseen. Early in the morning of this day, many persons, especially women, break an onion, and smell it; and in the course of the forenoon many of the citizens of Cairo ride or walk a little way into the country, or go in boats, generally northward, to take the air, or, as they term it, smell the air, which on that day they believe to have a wonderfully beneficial effect. The greater number dine in the country or on the river. This year they were treated with a violent hot wind, accompanied by clouds of dust, instead of the neseem; but considerable numbers, notwithstanding, went out to 'smell' it.

Also From Wikipedia:

The modern Sham el-Nessim is celebrated by both Christians and Muslims, so it is considered a national festival, rather than a religious one. The main features of the festival are:

• People spend all day out picnicking in any space of green, public gardens, on the Nile, or at the zoo.
• Traditional food eaten on this day consists mainly of Feseekh (a salted Grey Mullet), lettuce, scallions or green onions, tirmis or Lupini Beans, and colored boiled eggs.

So while you're enjoying delicious ham and Cadbury Mini Eggs, I will be out sniffing the refreshing Cairo air and dining on salted Grey Mullet. Jealous much? Yeah, I thought so.

Wishing you a Happy Easter, a Happy Sham El Nessim, a Happy Vernal Equinox and a Happy General Conference Weekend. May your air smell beneficial and your fish taste salty!

Patently Absurd?

Last May, the American Civil Liberties Union and the Public Patent Foundation filed suit against Myriad Genetics, charging that their patent on the BRCA genes was unconstitutional. Also last May (not knowing that I do, in fact, carry the gene), I asked Clark to write a little bit about his thoughts on the case. I'll sum it up for you- patents are good, money from patents make the discovery of genes like BRCA possible and cancer is bad. Oh and this case will probably go away.

Well, it turns out the case didn't go away and yesterday a federal court nullified Myriad's patents. The whole 156-page ruling can be found here and here are some links to the analysis of the decision written by people who know more about it than me. If Clark weren't busy at trial in Washington, I'd probably bug him to write another guest post. This will have to do for now:

New York Times: Judge Invalidates Human Gene Patent

NPR: Federal Judge Rules Against Patents on Human Genes

Newsweek: In Surprise Ruling, Court Declares Two Gene Patents Invalid

Los Angeles Times: Breast Cancer Gene Can't be Patented, Federal Court Rules

I'm not going to pretend to have any understanding of the legal implications of this ruling, but I do have a few concerns as a BRCA carrier.

If the ruling stands, a lot can change. It's likely that the test will be more readily available and perhaps cheaper. Right now, Myriad holds a monopoly on testing for the deleterious mutations in these genes. If you test positive and want a second opinion, tough luck. Also, in the absence of competition, Myriad charges $3000 for the screening tests. What these articles don't mention is that insurance will often cover the cost of the test (if you have a family member who carries the gene) and often research facilities such as the Huntsman Institute in Salt Lake City and the Arizona Cancer Center will test you for free or for a much smaller fee. I haven't come across anyone who has actually paid $3000 to have the test.

I'm all for bringing the cost of the test down- it's the readily available part that scares me. Will the quality of the test go down? Will the test be made available to people who don't need it? Will women demand to be tested so "they can have insurance pay for their boob job?" (Yeah, someone actually approached me about that one. I told her I would personally pay for her boob job if it meant I didn't have to have this gene.)

Are Primary Care Providers (who might start performing the test out of their offices) qualified to prepare you for the impact of a positive result? My answer is a resounding NO. Genetic counseling is essential and ought to be required for anyone seeking to understand their genetic predisposition to a disease. I shudder to think of unqualified doctors testing women and sending them off to make important life and boob altering decisions without really knowing the facts.

It's not clear yet what effects this ruling will have on the future of genetic testing. I'm really hoping that it might open the avenues for further research on the BRCA gene and spur advancement in the prevention of hereditary cancers. One thing I repeatedly hear from my doctors is that science is always moving forward and things will be different in ten years. Whichever way the ruling eventually falls (I'm assuming that Myriad is going to appeal the decision), I really hope that's true.

**I ended up bugging Clark anyways and here are his two cents**

I would only add this link to a patent blog that I follow. It cites the most interesting language in the opinion and notes that this thing is likely to be reversed by the Federal Circuit (the appeals court for patent issues). None of the patent people I know can imagine the Federal Circuit invalidating gene patents - especially not under this kind of rationale. I can't really see the Supreme Court upholding it either. In my opinion, this is the kind of crap that gets churned out when English majors issue patent decisions. A lot of the judges on the Supreme Court are English majors, though, so we'll see what happens.

The Travel Bug

I'm going to let you in on a little secret...

I'm kind of a homebody.

I like the comfort of my own home and my own things. Life is easier when my kids can sleep in their own beds and play with their own toys. Life is easier with my car, my washing machine and my DVR. So why am I going halfway around the world to hang out in a third world country?!

Because it's going to be awesome. And because it's good to get out of your comfort zone. And because I miss my dad. And because by the time I was Booker's age, I had already lived in three countries and Booker has only ever been to Mexico (Nogales- which doesn't even count.)

And lastly because Clark has a trial in Washington D.C. which is going to take him away from us for several weeks and I don't want to sit at home without him. So off to Cairo we go.

I'm going to let you in on another little secret...

I'm terrified.

Not about being in Cairo, but about getting to Cairo. I hate traveling with my kids. My Boys + Traveling = Waves of Vomit. It's not like they're actually sick, but for some reason as soon as we cross that state line/check into that hotel/unload that luggage, they release giant waves of vomit. When faced with something unfamiliar, they always resort to the same thing- barfarama. The must get it from their mom.

And that's just domestic travel. I'm not sure how they'll react when they're faced with over 15 hours of flying and jet lag. I imagine it will involve more than just vomit. I'll be sure to pack some extra pairs of underwear. Maybe some nose plugs and ear plugs for the passengers seated next to us. And valium. For the entire plane. But not the pilot. Lots and lots of valium.

I've been so focused on getting to Cairo, that I haven't thought at all about what we want to do once we're there. We're going to stop in D.C for a few days to hang out with Clark. So dear readers, with one day in Washington D.C. and two kids under four, what should we do and see? And for those who have been to Cairo, what was your favorite thing to do and see there?

Wish us luck!

Monkey See, Monkey Do

The Tueller Sibs

I've been thinking a lot about my siblings lately. I feel really lucky to know them and I think you ought to know them too.

Marie- My older sister, more commonly known as Aunt Rie Rie. She lives in Arizona but I won't tell you where, you might try and stalk her (yes, she's that cool.) She came here by accident. Actually, she came here to get sober. She went to the same treatment center as Heather Locklear and Oprah. But she's way hotter than Heather Locklear and way cooler than Oprah (who wanted to get sober from over-eating and not drugs & alcohol.) I won't tell you much about that because that's a story you ought to hear from her. It's a good one with a happy ending. Ask her sometime, she'll tell you. She might even invite you to come to an AA meeting with her and if you do go, be prepared to be mobbed by her adoring fans. She has huge fan club all over the world. Her latest adoring fan? This tiny growing fetus...

This fetus loves my sister because she fought long and hard to make both her body and mind strong and clean. I love my sister too. Did I mention that she has a Master's degree in psychology and really good taste in music? Seriously, don't try and stalk her. She took a self-defense class last year.

David- My oldest younger brother, more commonly known as Yaya's Husband. David has made lots of really smart decisions in his life. He decided to serve a mission for his church in Nashville, TN. He decided to study Computer Engineering at my alma mater. But his best decision ever was to marry Yaya. I used to say that David was my favorite brother, but now Yaya is my favorite so I'm not sure what to say. Maybe I should stop with the favorites.

When David was younger, my mom thought he was learning disabled (she also thought Danny had rabies and I was going to be dyslexic because I went to an Arabic preschool. Let's just say, her instincts were never quite right.) David was just a quiet kid. It's pretty clear to us now that he is quite intelligent. He's learning Japanese for goodness sake so their kids can be bilingual. Plus, there's no way Yaya would settle for someone who isn't as smart as her.

Daniel- My middle younger brother, also known as the one I don't like to talk much about because it kinda hurts. Danny turned 18 one week ago. I didn't do a birthday tribute like last year because like I said, it kinda hurts. Danny has graduated from a youth program to a young adult program where he has little bit more freedom. He's interested in music and wants to put out an album. A few weeks ago, he asked me to come up with some album art. He described in detail what he wanted and this is what I came up with...

But being the lame older sister that I am, I sent him two images and told him he ought to consider this one instead...

Despite his dark exterior, Danny has a big heart and a good sense of humor. I love him immensely.

Christian- My youngest brother, also known as the baby of the family. Although he's no baby. He's endured a lot being the last one out of the nest but he's pretty well adjusted. He's my favorite. Not my favorite brother, just my favorite human being. Chris makes friends wherever he is, whether it's Cairo, Egypt (where he currently lives) or Provo, Utah (where he spent a year living with my mom while my dad was in Baghdad.) He's a global social butterfly. Want proof?

This is a random photo I stole from Chris' facebook profile from his trip to the Philippines last week. It's pretty typical of Chris- he's a ladies' man, he's a man's man. He's everybody's man because he's easy going, he's kind and he's the type of guy you want to call your friend. He'll give you the shirt off your back. He probably did in this photo. He was in the Philippines working at an orphanage. There's probably a little Filipino orphan walking around with my brother's shirt on and feeling super cool for having known Chris. For awhile there, Chris and I had a little competition going to see who could get the most facebook friends. He's blown me out of the water. In fact, if you're still reading at this point, you should facebook friend him. He'd love that. I don't care who you are, just tell him Margaret sent you.

Fighting Chance

Remember how I was concerned that cancer doctors wouldn't want to see me? Well, nothing could be father from the truth. Since starting the whole cancer screening process, I've had a WHOLE team of doctors assigned to me... a breast oncologist, a gynecological oncologist, a high risk specialist, a genetic counselor and a social worker. They tried to assign me a nutritionist too but I had to draw the line somewhere. They've poked me, prodded me (you don't want to know where), magnetized me and inquired after every little breast/ovary detail you could imagine. And still they want more! I feel like I've got a doctor's appointment every other week. And I'm a healthy person. I've got doctors clamoring over my breasts and ovaries and they're as healthy as can be (my breast and ovaries, not the doctors, although they're probably healthy too.) I can't imagine what it'd be like if I actually had cancer. Not true, I can imagine what it's like. Thanks for finding out, Mom so I don't have to.

I'm not complaining. I hope it doesn't come across that way. Just pointing out how strange it all seems. Is this a good use of time and effort for these highly specialized doctors? If I didn't have health insurance, would I be willing to pay $3000 out of pocket for an MRI that I know is going to come back clean? Every six months? Am I abusing the healthcare system? Am I crazy for wanting more kids? For keeping my ovaries for a few more years? Or am I crazy for not getting pregnant right away? As Clark put it the other day...

Clark: There's no reason to hurry. I mean, really, it's just our youth wasting away while your breasts and ovaries plot to kill you. :)

me: oh no you dih int

(Aren't you glad to know we plan for our future children over google chat?)

Or is it even worse than that? Am I crazy (selfish) for bringing my own genetically deleterious children into the world and not adopting? Is it better to just not know I carry this gene?* These are the questions that haunt me just when I begin to feel okay about everything.

Now I realize this is rather personal stuff (my grandma is probably horrified.)** On the list of things you shouldn't put on the world wide web, your baby-growing-bits and your babies probably rank pretty high. But ever since since I joined this little BRCA world, I've found great comfort in reading the blogs of other women like me. Unfortunately for me, most of them are pretty heavy on prophylactic surgery and light on preventative screening. Which isn't to say I'm not considering surgery down the road. I'm just not there yet. So in the meantime, maybe I can offer up my voice to those who have settled on screening for now, to those who still have children in their futures and to those who have a love/hate relationship with their breasts & ovaries.

And now for something completely different. Just kidding, it's related and humorous.

Check it out:

Confronting an overwhelming genetic predisposition for breast cancer, a comedy writer makes the ultimate choice. Amy Cohen is the author of the New York Times bestselling memoir, The Late Bloomers Revolution.

*The answer is no.

** Love you, grandma!

Old Tucson with Mama De

Sometimes I secretly rejoice when I forget my camera on family outings. Unfortunately for me, I remembered it last weekend when we took my mom to Old Tucson Studios. Which is fine, Old Tucson is basically a giant excuse to take fun, cheesy pictures. Like one of Clark, Booker and Ike posing as the Three Amigos. Classic. Or one of Booker drinking a sarsaparilla at the pulpit of the Old Chapel. Or several of Ike looking confused and/or embarrassed to be seen with us. Fun times.

Slideshow here.