Boil

June 30, 2009

When I opened facebook this morning, I learned that a colleague of mine, Jeff Conant, had died from infection complications after his first chemo treatment for ALL. Shock, despair for his family (who I don't know too well, except from sitting in Viking stadium together when Davis and his son, Scotty, played JV soccer together), and sadness followed in rapid succession. The fast boil didn't come until a couple of hours later, when my feeder reader sent me this blog entry from the Wall Street Journal's blog on health and the business of health by Shirley Wang:

Amid much discussion around comparative effectiveness of medical treatments and whether cost should be a factor in treatment decisions, a new article in the Journal of the National Cancer Institute estimates it would cost $440 billion to extend life by one year for the 550,000 Americans who die annually of cancer, reports the WSJ.

The authors, from the National Cancer Institute and National Institutes of Health, say that 90% of cancer drugs approved in the past four years cost more than $20,000 for 12 weeks worth of treatment.

Some drugs have limited upsides, and these shouldn’t be developed unless they will cost patients less than $20,000 for a standard course, they say. Two more recommendations from the authors: doctors shouldn’t prescribe cancer medicines for non-approved purposes, and new medicines with marginal benefits shouldn’t be used for those with advanced cancer.

(continued here)

If you have someone special who has died from cancer, re-read this last paragraph. Then scream. I'll have to think about what we should do after we scream. Any suggestions?

Love

June 26, 2009

Every time I look at the lanyards made by Erin's friends, I fall in love (click for a close up!).


Who wouldn't? They reflect a collective spirit of devotion, creativity, and sheer camaraderie of effort that boggles my mind.

Today we held the fourth lanyard making party of the summer. We are building inventory. I was prepared to give the greatest-distance-traveled award today to Lara and Hans for driving over from The Woodlands to participate (more than an hour, but less than two hours away).

When they first arrived, no one else was here and it was 3+ o'clock. I hadn't extended specific invitations, so I had no clue if anyone else would show up. I wondered if the energy behind the lanyards had petered out, and how I would explain that to someone who had gone out of there way to be there.

Before too long Jackson, my faithful friend, and Douglas arrived, with Shirlene. At least, I thought, we'd get a little done. It didn't have to be like the other weeks where we would have fifteen, twenty, or even more people crowding the house. We'd each have our own space and our own work tray and make beautiful bead creations.

Soon after, I found myself screaming in excitement. The entire Benson girl group from Fort Worth (sorry, Lara, you no longer win the prize for furthest traveled. New award goes to Ellen, Clayton Sue, Charlotte, and Clarke from Fort Worth. . .check the map you non-Texans. . .this is definitely a three plus hour drive for beading) arrived at the back door.

Then Anja and Tommy, Beverly, Colton, and Weston , Patti and Aaron, Mary Ann and Jesse came in ready to get after it.

I can't really explain the lanyard sessions. None of us are artists. Some are craftier than others. But it becomes more than that. This is absolutely grassroots. I have no control over the final product. . .and no matter what I have thought of each lanyard that someone has produced--perfect or shall I say less than perfect in my eyes--someone has fallen in love with it and said "that one's for me!" (There's probably a metaphor here, but I'm too tired to figure it out.) If only Erin made lanyards or if only I made lanyards, the range of creations would be so much smaller. If only I bought beads, the range of styles and colors would be so much narrower.

Instead, each week, I cast my bread upon the water. I invite anyone who want to come, and I let them have at it. I put out a few snacks and get some wire ready. A fewer hours later, as folks gather up to leave, I have more snacks than when I started with, even though everyone has eaten heartily. The lanyard board brims with inventory that replaces the lanyards shipped the previous week, and then some. I have more beads than when we started. My heart is fuller.

Earlier this week, Tracy called and asked if she wanted me to take lanyards up to the Children's Neruoblastoma Cancer Foundation Conference to sell. I don't know if anyone there would want one, but if we could somehow activate the energy, creativity, shared design, silly and serious conversations, excitement, friendship, and love that went into each one, they would be very popular.

See you next Friday for beads and love.

Kick

June 24, 2009

(Friday, June 28 UPDATE: Thank you so much for responding to my request for information about health insurance issues. Unbelievably, I have had 94 responses in the last ten days. Woohoo! I have heard from the very satisfied and from those who have run into stumbling blocks and hurdles along the way. One hundred is not a magical number, BUT I sure would like to hit that and beyond. So, if you haven't found the time to drop me a line on the surveymonkey, I'd would appreciate hearing from you. Those of you in Texas don't want to go outside in the 106 degree heat anyway, and the rest of you may need to put off doing your chores for a few more minutes. Clicking on the link to the left will take you to the five question prompt.)

Most of you probably live somewhere convenient, by which I mean, if you need something you walk, ride, or drive to a store and buy it. Even when I get over the true fact that I find in-person, brick-and-mortar shopping as therapeutic as a jellyfish tentacle wrap, I must face up to living in a townish-sized city whose primary demographic target is twenty-five to thirty years younger, and way hipper than me.

Walter will tell you that my solution is to wait for him to buy things for me. His most recent evidence would be our trip to Gander Mountain on Sunday to buy a pair of Keen's.
These hot little mamas replace (under duress) the Nike water sandals that have kept my toes cool and given me an incredibly stylish mid-foot tan for years. When the plastic guy that holds the heel strap split ten days ago, I tried just switching into my soccer flats--too hot and too much trouble. I tried going barefoot more--too much of a tenderfoot. I then solved the problem by using a sturdy paperclip to re-attach the strap to the shoe. Ta Da! Solving the problem, however, caused a secondary problem: Walter thought I looked, hmmm, shall we say, unpresentable and not incredibly professorial. (Note: I was going to use the term looked like a "Culhane," which is a word that Walter's family uses to describe hick-like behaviour and appearance, but when I googled Culhane to see how to spell it and what it really meant I decided prudence was a better course and that Culhane wasn't the best descriptor in this case.)

So, off to the store he swept me, and now I'm presentable and possibly a tad professorial (at least like a summertime, outdoor active professor). They certainly made it easier to jet outside this morning to chase the recalcitrant and unruly goats out of the backyard.

Which brings us to "kick."

Not really. We actually have to go back to my first paragraph about shopping to get to kick. Quite some time ago (months, maybe years), I signed up for a free internet service called iGive (this button is clickable).
The premise was that if I shopped at my usual internet stores like Lands End, L.L. Bean, or LEGOS (just to name some of the Ls), but went to those sites through the iGive portal, the stores would donate some percentage (usually between 1 and 4%) of any purchase I made to the charitable cause of my choice. . .like the Children's Neuroblastoma Research Foundation. I did the logical thing: signed up and promptly forgot about it.

Last week, I needed to order a dozen new soccer balls because the Mystic '97 move up to size 5 this year. Since our local stores would carry either inferior balls or way expensive balls, I went online to a better options: soccer.com. Not, by the way, entering through iGive.

A couple of days later an email from Betty at iGive somehow cleared my spam filter. I read that soccer.com would have donated 2.8% of my soccer balls purchase to CNCF AND given me free shipping. Then I kicked myself.

Let me give this to you straight. This was not gratuitous shopping. I needed these balls. I was definitely going to buy them from soccer.com. If I had taken the simple extra step of going to this page:

http://www.igive.com/shop/merchants.cfm?sort=name

and scrolled down to click on soccer.com, I could have helped CNCF out. I need to do this every time I shop online (see paragraph 1 above where I confess that I'd rather shop online than go near a store). There are 732 different merchant currently participating (click for the full list) currently, and not just Jim Bob's Bait Shop.


To shop and qualify for a donation, you must be logged in as an iGive.com member and you must reach the store through iGive.com or iSearchiGive.com.

Want to join and start shifting some money towards CNCF? Click this button, sign up, choose CNCF (or some other great and worthy charity), and then don't act like me: remember to log in at iGive before shopping.

Did you notice I updated the Davhee Repore? It's Wordless Wednesday over there, but over here I can tell you her name is EVI, and she's Davis's friend.

Beading on Friday, same Bead Time, same Bead Place, same Bead Channel.

Reflect

June 22, 2009

First, thank you for all the many responses to Erin's health insurance questionnaire (the link is at the left if you haven't taken the time yet). I have learned much and am learning more everyday. Please continue to share with your friends that I would like to hear their stories.

Now, on with what you come here for. . .

What would you conclude if you saw a bunny leaning up against the kayak parked on your deck?

Me too. I would assume she was a borderline delinquent, moments away from shoving the boat onto the lake and heading out for a joyride. She should appreciate that I turned her away from a life of crime that begins with boredom, and is quickly followed by the thought that "no one would really miss the boat if I took it for a spin around the lake." Left to its natural conclusion, the quick spin would have begat a chase scene worthy of a Bruce Willis movie and ultimately would have ended in Grand Theft Kayak charges.

She should also appreciate that I noticed her before Willie did.

In addition to having a bad bunny on the premises, I had a particularly bad bag of garbage that did me wrong, not once, but twice this weekend. I don't want to mislead you into thinking I chose "bad" because the bag had a similar, criminal personality as the bunny. It wasn't even "bad" in a nasty smelling or split-open-at-the seam way.

No, the bag of garbage was bad because it it caused me grief: first by distracting me on Friday night so that I didn't see the cat before Willie did. He caught me unaware, lunged for the cat, and ended up pulling me on my back across my mom's caliche driveway (NOTE: though either would be bad, do not confuse caliche with caliente). Luckily(?), only clothed body parts contacted the gravel, rendering my favorite cantelope-colored shirt hole-y (Holy?), but avoiding significant blood spilling. I subsequently managed to get the bag into the garbage lock up with the rest of the neighborhood garbage, only to have to go dumpster diving for it on Sunday morning in search of a Lowe's receipt that Walter needed. Very rarely does a bag of garbage bring so much to a relationship.

If you come here for light-hearted merriment, this is the point you should click the "back arrow" button on your screen.



You may or may not know The Treachery of Images, which is the painting pictured here.

You may or may not know its artist, Rene Magritte.

You may or may not read French (translation: This is not a pipe.)

Magritte was not purposefully obtuse. He wanted to make the point that his painting represents a pipe. No matter how real it looks, you can not stuff it and smoke it.

By the same token, Ceci n'est pas Erin et ceci n'est pas un avocado.

For me that is the most difficult hurdle to healing: the omnipresent realization that nothing I have, nothing I have saved, no remnant nor relic of Erin's life is Erin.

Given that unchangeable reality, I fall back on my only option: I find comfort in the essence of Erin and choose to appreciate what I had and still have rather than what I lost. This, my friends, is not like an afternoon in the park (either with Seurat or Carl).

Erin sent me a gift for her birthday. During the last fused glass workshop, she conspired with Jimmie Homburg and Janice Sahm to design a special fused-glass piece for me (I think as a mother's Day gift, but it didn't get done in time for that). This was something they could not fire in the "redneck" kiln in the church's microwave. It had to be taken to a real glass maker's shop a hundred miles from here. This photo doesn't do justice to its subtlety and beauty. It has texture that you can't see here and uses diachroic glass that gives it a particularly luminescent sheen. The way it's strung lets it hang exactly on top of my heart.

Remind

June 18, 2009

I know that you don't actually need reminders, but just in case you know someone who does:

1. You can still drop off food or beads for the Food and Bead Drive at First United Methodist Church in Bryan (506 E 28th St) tomorrow (Friday) afternoon (1:00-4:00).
2. You are all invited to the weekly lanyard workshop at my house at 3:00 tomorrow (Friday) afternoon.
3. There is still time to fill out your Erin's Health Insurance Survey. I know that a lot of your who read this page don't think I am talking to you when I ask for your help with this survey--your kids are healthy, you don't have kids, your kids left home long enough ago that you no longer fear the boomerang, you are perfectly happy with your insurance, you think that I just looking for complainers--but I am talking to you. Please consider taking three to five minutes to click and answer. Click Here to take the survey

This afternoon I received some of the digital images from Erin's cookbook photo shoot. I guess that's my reminder to make guacamole and mandarin orange cheesecake on Saturday.

Deputize

June 15, 2009

Honestly, I should choose "party" as the post title this afternoon, since I hosted three parties over the weekend. We had another fantastic beading party last Friday. Thanks Nico, Toni, Sandy, Devon, Sam, Lisa, Jesse, Jackson, Douglas, Colton, Aaron, Sarah, Beverly, and Patti, for expanding the lanyard, necklace, and eyeglasses chain collection! Hopefully, you'll come back this week and work some more.

Once I had worn their fingers to a nub, the evening party started, and what goes on at Leisure Lake at the after-party party has to stay at Leisure Lake. Suffice it to say, that most of the parents had a much better time not beading than their kiddos did beading.

Saturday night, we had an undisclosed-but-important-milestone birthday party for my mother. Kat and the beautiful Emma provided much of the liveliness, and by judicious use of candles, we didn't burn the house down. I can't tell you how fortunate I feel to have my mother as my friend and neighbor and how honored I was to throw her a party.


Despite the fun, I must have your serious attention for the rest of the post. If you have not lived in a well for large stretches of the past month, you know that lawmakers are finally getting down to the business of discussing (and hopefully acting on) health care. I have taken an unpaid position in Chet Edwards office for the summer researching health care insurance reform--in particular, the effect having or not having health insurance has on families that are dealing with diseases (interpret this broadly: it could mean rare or common illness and chronic or catastrophic illness, or accidents that require treatment).

Of all the things the Buengers had to worry about during the almost seven years that Erin was sick, insurance was not one of them. We never had to stretch the medicine that kept her from vomiting everywhere during chemo because we could only afford a limited number of doses. We never had to forego treatment or delay tests because a bureaucrat thought she knew something her doctors didn't. We never, ever made decisions about her health based on whether something was covered and something else wasn't. We didn't have to choose between paying our phone bill and our insurance premium. We didn't have to stay in jobs that stunk, or risk losing what coverage we had.

We were damned fortunate.

Having insurance didn't save Erin's life, but it sure made all the days before she died a lot easier and more enjoyable.

I would like to deputize each of you to help me collect information.

Let's start with some simple questions:

1. How does having or not having insurance affect your ability to get care?
2. How does having or not having insurance affect the rest of your family life--what trade offs do you have to make?
3. How does your child's illness and the availability of insurance affect your job status? Did you keep or lose your job? Did you have difficulty changing jobs?
4. What else would a reasonably informed person want to know about life style changes you had to make?
5. What changes to health care would help your family the most?

Please. No, let me try again. PLEASE help me.

How?

Send your answers to these question to me at ebuenger@suddenlink.net (NB: Mea culpa, I originally posted the wrong e-mail address. the one in red is correct. It is Erin's e-mail. I am doing this for her because she could never stand the thought that sick children didn't get care.). You do not need to give me your personal information, although I would love to know your zip code. After you have e-mailed me, do one more teeny, tiny thing:

Ask your friends and relatives and facebook compadres and website followers and neighbors and pew sharers to do the same.

This is as serious as I have ever been about any request of you. This isn't political. I don't have a horse in this race in the sense that I am pushing a particular reform. I just want to know what it's like. If you have had a great experience (with or without insurance), let me know. If it has sucked for you, let me know. Let me know what works and what's broken.

Consider yourself deputized. Spread the word.

Verbs Abound

June 13, 2009

The road trip didn't feel like vacation, probably on purpose. It doesn't yet seem quite right to vacation without Erin. So, I framed it in a utilitarian way. We needed to take Ruby to New York. On the way, we needed to pick up Davis. I had a little business to take care of in Washington (more on that next week), so it made sense to kill two birds with one stone. The sidetrip to Niagara was vacation-esque, but a three-hour layover does not make a holiday.

We played the license plate game, but clearly needed more skill on the team, because despite driving 3300 miles we did not collect all fifty states. In fact, we didn't even collect the lower forty-eight. Missing: Delaware, Vermont, and a whole slew of states from west of the Mississippi, although we did bag Idaho early on, which gave me hope that we would win.

One thing I noticed was how clean the roadsides were. I grew up when you always saw litter by the highway as you drove, no matter where you went. This commercial resonates in my memory:



Now, when you drive cross country, very little trash catches your eye. In Texas (and I think nationwide) this has been the result of a variety of initiatives, but mainly public awareness campaigns and voluntary efforts. We have "Don't Mess with Texas" and "Adopt-a-Highway" programs, and I have to say that these efforts have been remarkably effective, which makes driving all the more enjoyable. I have always thought that the highway litter problem is analogous to a variety of other issues: If everyone actually picked up their own mess, there wouldn't be any mess. I preach this to my students, so they don't leave soda cans, water bottles, and discarded newspapers junking up the room I where I teach.

Unfortunately, this personal responsibility argument does not apply across the board. Children with cancer will not recover just because they or even their families act responsibly. While we have a large number of people creating public awareness about pediatric cancer, and an even larger number of people voluntarily making donations and raising money to help, it is not a problem that will be solved by a good ad campaign and a cadre of volunteers. Its going to take a bigger, more far-reaching effort and a boatload of money.

Beyond this scree, verbs abound around here. I get almost daily reports of people who take Erin's inspiration to add verbs to their repertoire. Laura started riding her bike to work; Brooke climbed and marched and climbed some more; Becky has added reading to her daily life. I love hearing these stories and am trying to figure out a way to let people post when they adopt a verb.

The lanyard workshop idea has fully blossomed. For locals, this means that you come out to the house on Fridays at 3:00 to make lanyards and socialize. We had fifteen folks for the first one and a bigger crowd than that yesterday. Erin's Dream Lanyards (and eyeglass chains, necklaces, and coming soon, matching earrings) allow Erin's friends to keep her dream of finding a cure for neuroblastoma going. The makers also think it's a great way to remember Erin, and many of them have been adding a green bead to their creation to give each one the "Erin touch." I have a few outstanding orders (Sarah, do you have a color preference? Patti, it took me a while, but I finally figured out how to do a Rennaissance-style one for Brooke.), but mainly we are accumulating inventory for back-to-school. In the meantime, if you find you can not exist another day without one, please let me know, and I can set you up. ALSO, if you ordered one at some point, and I have overlooked you, please let me know, and I will fix that problem!

Next week, Erin will miss Creative Arts Camps at First United Methodist in Bryan. This fantastic program was always one of the highlights of Erin's summer. In her absence this year, the group will hold a food drive for the Brazos Food Pantry and also a "bead drive" for Erin's Dream Lanyards.

Erin is also missing Mo Ranch camp this week. Clayton Sue, Charlotte, Clarke, and Elle will have to keep her spot warm on the ropes course, the horse trails, and in the river.

Doggie Boarding

June 10, 2009

Call the ACLU.

Alert the International Red Cross.

Find me the website for the Geneva Convention.

Walter and I returned from our meanderings late last night and faced what someone in the prior presidential administration might euphemistically call extreme salutations or perhaps even harsh felicitations.

You see, Walter and I had been subjected to stress positions for fifteen hours (I don't know what else you would call being confined to a small space with no room to straighten your legs or stand). When we walked into the house, Willie and Teddy made us lie down in the middle of the floor. Then they slurped and licked our faces non-stop. I think the most hardened detainees can handle thirty seconds of water boarding before completely succumbing to the overwhelming sense of drowning. I didn't last seven seconds of doggie boarding before I started promising them steak tartar three times a day (or six if they wanted) and their own feather mattresses to sleep on and destroy. Who really knows the actual safe flow rate and volume of doggie spit so that the recipient doesn't drown?

To make sure we were completely compliant, they followed the lickfest with some rapid tail whipping (Willie's specialty), a barrage of jumping, circle-running, and furniture climbing to disorient us, and finished by planting themselves on our chests to immobilize us for more.

I guess there are worse things than being held prisoner by your dogs.

Random Walk (see footnote 1 below)

June 8, 2009

America is wonderful.  Yesterday, Walter and I were holding hands and strolling along the paths at Niagara Falls (both in America and in Canada).  Today, I'm about to quaff the last beer of vacation in Bowling Green, Kentucky.  The Eisenhower Interstate System:  what a great use of taxpayer money!

Here's a confession, when I come across a vacation entry on other people's websites (you know. . .on the first day we . . .then we. . .after that. . .), I barely skim them.  I know, someone has had the vacation of a lifetime, seen exotic and memorable things, and wants to tell me all about it.  Well, I'm going to assume everyone else is just like me, so for your benefit, I'm going to skip the details and give you a small random walk through our last eight days. . .you know the parts that would catch your eye if you skimmed the more detailed version.

• I saw an empty helicopter propped on the lip of a ridge right above highway 81 when I drove through Virginia.  It made me say HMM.
• Fifty-one minutes into the trip on the first day (that's how long it took for me to remember that I forgot my lap desk so that I could write thank you notes when it was Walter's turn to drive)
• Did you know you have to pay 50 cents to get back into the US from Canada?  I didn't and neither did the nice woman from the midwest, who had crossed the pedestrian bridge to take a picture without her purse.
• West Texas does not have a monopoly on wind generators.  We saw a wind farm in New York.
• If you choose your accommodations wisely in Erie, Pennsylvania, you never have to go outside (to eat, visit friends in other hotels, or spend the day at the local water park).  This would be handy if you planned to stay in the country's 13th snowiest city in the winter.
• You can wonder aimlessly around the Pentagon after dark without arousing suspicion if it is raining such a gully washer that even the MPs aren't on patrol.  Do not try that in dry weather or daylight.
• It is impossible for me to choose a favorite character from the new Star Trek movie, and I am only a little disappointed that rain scratched our soccer watching plans. 
• Yet again, the Buenger family agreed to meet at a restaurant that had closed down (no, we are not hungry idiots.  As has happened innumerable times before, we chose the restaurant and discovered its defunct-ness only after we arrived).

I'm told that the Let's Do It! Mission Weekend was a terrific success.  Thank you Tammy Raulerson for enlightening everyone about pediatric cancer, and thanks to all the participants for their good work.  

Walter and I still have miles to go before we can cuddle up the dogs.  By Wednesday, we'll all be doing the happy dance together.

(footnote 1:  Click here for the mathematical explanation of random walk)

Eat

June 4, 2009

Having a large Raffi collection even when supplemented by Sharon, Lois, and Bram and Trout Fishing in America, is overrated.  Nineteen years ago I made my first purchase of children's music to play in the car:  Raffi's More Singable Songs for the Very Young, that started with "Six Little Ducks" and finished with "New River Train."  That move eventually led to an almost complete abdication of control over drive-time listening.

Even after the kids didn't need "children's music" per se, they had grown used to choosing, and so I listened to The Beach Boys, The Beatles, Jerry Jeff Walker, Warren Zevon, Pink Floyd, and Paul Simon, ad nauseum.  Not bad choices in and of themselves.  As you can tell, I had some influence over their tastes, yet I wasn't the one who called the shots. . .ever.

Now my van has Sirius Radio with twelve preset stations:

1. The Sixties on Six
2. The Seventies on Seven
3. Classic Vinyl
4. Classic Rewind
5. Deep Tracks (lesser known cuts of better known artists)
6. The Spectrum (my effort to keep up with a bigger variety of music and artists)
7. The Coffeehouse (acoustic and singer/songwriters)
8. Margaritaville (totally relaxed with an attitude)
9. Outlaw Country (because I live in Texas)

and three news stations:

1. POTUS (politics)
2. CNN
3. BBC

I cycle among the twelve and can always find something decent to listen to.  In fact, one day recently (I can't remember whether it was last week or sometime this week as I crossed northern Louisiana, northern Mississippi, or northern Alabama--believe me those miles are all a blur), I was listening to Press Room on POTUS, waiting for Robert Gibbs (not an original Bee Gee) to come on and do his daily press briefing from The White House.  As I waited, listening to the filler drivel, the show host suddenly switched to breaking news:  live coverage of President Barack Obama ordering hamburgers for himself and the reporters that went with him at THE FIVE GUYS hamburger joint.  He paid for it himself:  80 bucks worth of burgers and fries.

Guess what we saw when we pulled up to our hotel yesterday?  Across the street from our Courtyard Marriott was Five Guys .  Guess what I had for dinner tonight:  a cheeseburger and fries, just like our President, except he had his with mustard, tomatoes, and jalapeno peppers, and I had mine with mayonnaise, tomatoes, lettuce, and pickles.