CureClimb 2008

Until We Meet Again....

2008-09-13T11:06:00.001-04:00

It's time to put this site on hiatus, pending another climb or another climber. Until that time, my even more random this-and-that can be found at Memory Pebble.

I certainly have not forgotten the mountain....

Camp Schurman (Resting Up)

2008-09-05T10:46:00.001-04:00

Camp Schurman (Resting Up)

2008-09-05T10:38:00.000-04:00

Camp Schurman (Resting Up)

2008-09-05T10:09:00.000-04:00

On to Camp Schurman

2008-08-05T08:44:00.000-04:00

After dropping from Camp Curtis to the Emmons glacier (circumventing and stepping over crevasses for the first time), we followed the Montanans up to Camp Schurman. Along the way, it started to snow....

After some unpleasant standing around in the wet snowfall, we pitched our tents and settled in. This would be home for the next few days.

Bob and Rob's camp:

John's camp:

We tried to be perky and glad. But the truth is, it was a hard, hard day.

Brief Rest at Camp Curtis

2008-08-02T10:37:00.000-04:00

After the endless climb up the Interglacier, it was great to look over the far side of the ridge to look down on the flowing, crevassed Emmons glacier.

Looking back down the ridge: John, Bob, the Camp Curtis tent sites, Mount Ruth, and the lower Emmons. We had ascended the Interglacier from the left.

Conquer Childhood Cancer Act to Become Law

2008-07-30T12:09:00.002-04:00

From the CureSearch Blog, Tuesday, July 29, 2008:

We did it! YOU did it! After years of relentless effort by so many in the childhood cancer community, including thousands of Congressional visits, and tens of thousands of letters, calls and emails to our nation’s leaders, the Caroline Pryce Walker Conquer Childhood Cancer Act has become law! You, the nation’s “champions for a cure,” deserve so much credit for this remarkable achievement.

Full story here.

Camp Curtis: Brief Rest

2008-07-30T02:14:00.000-04:00

Between Glacier Basin Camp and Camp Schurman lies bare-bones Camp Curtis (not that anyone was camped there), on the ridge above Glacier Basin and the Emmons Glacier beyond. We stopped here briefly before dropping down to the Emmons and then climbing up to Camp Schurman.

These guys were Montanans, on their way to Camp Schurman and beyond, and we graciously allowed them to pass us by at this point. "We're dumb," they said, "But we're good at carrying stuff."

The mountain waited in the clouds.

Climbing the Interglacier

2008-07-30T00:19:00.000-04:00

Urgh.

Well, Bob was still smiling.

More Urgh.

Moraine, Glacier Basin

2008-07-29T23:57:00.001-04:00

After waking on Day Two, we left Glacier Basin Camp and headed up into Glacier Basin proper, leaving behind the evergreen trees to hike up the moraine seen below, climb some relatively gentle snowfields, then roping up to climb the Interglacier itself--a long trudge with 60-pound packs--to the ridge that connects Steamboat Prow to Mount Ruth.

Sunday Evening at Glacier Basin Camp

2008-07-10T18:20:00.004-04:00

Little Tahoma:

Rainier behind the ridge:

Looking Fresh and Happy

2008-07-10T18:14:00.004-04:00

...on the way to Glacier Basin Camp.

I was already grimacing after the first mile or two carrying that 60-lb pack. Why did these guys look so chipper?

See all our pictures (and a couple of videos) here.

Glimpse of the Mountain

2008-07-08T14:08:00.003-04:00

On the trail to Glacier Basin Camp, where we spent the first night, we caught a glimpse of Rainier (hanging glaciers at the top of the Willis Wall), roughly 9,000 vertical feet above us.

See all our pictures (and a couple of videos) here.

Sample Rainier Pictures: Happy and Innocent

2008-07-08T08:56:00.003-04:00

Rob, Bob, and John leave the parking lot before the easy stroll up Mt. Rainier. Sixty-pound packs merely add to the joy.

See all our pictures (and a couple of videos) here.

Closer to Sea Level

2008-07-04T19:12:00.003-04:00

I knew climbing Mount Rainier would be hard. But jeez.

Thank you to everyone who donated for the cause, prayed for us, lit candles for us, gave us talismen of strength and union. Surreal as it seems at this point, we made it to the top.

Then we simply had to find the strength to get back down.

I'm still kind of speechless about it all, but will write some words about this adventure when I can. Many, many pictures are on the way too. Best. -R

Bob and Rob on the Summit

2008-06-30T13:24:00.002-04:00

On the summit, after 8 hours of climbing. Four hours of down-climbing to come....

Photo by John.

(More Pictures soon)

Climb Note

2008-06-28T00:05:00.002-04:00

Plaque at Camp Schurman, elevation ~9600 ft:

Into a cloud sea far below
I lonely watched the red sun go.
Then turning, miracle of glad surprise
Enchanted saw the full moon rise.

-G. E. Schurman

...Which is another way of saying:

Made it to the summit Thursday, 6/26, at 10:30AM, after 8 hours of climbing.

Egad.

Rough Itinerary

2008-06-18T10:22:00.009-04:00

Here's a quick and dirty itinerary. The summit attempt will most like be made either Wednesday or Thursday. But Tuesday or Friday are also possibilities. A lot depends on the weather. Map images below can be seen larger by clicking on them.

-(Rob Flies to Seattle Thursday 6/19)
-Sunday afternoon (6/22): Drive to mountain, hike from White River Ranger Station (4400') to Glacier Basin (6,000').
-Monday (6/23): rope up and climb the Inter Glacier from Glacier Basin, over the South side of Steamboat Prow (at 9,000'), drop down to the Emmons Glacier, climb to Camp Schurman (9,500'), where we'll spend the night Monday. Note that the Camp Curtis "campground" noted on the map is actually not much more than a rocky area on the southern ridge of Steamboat prow.
-Tuesday (6/24): Climb a few hundred vertical feet to a spot on the glacier called Emmons Flats. This crude (and not very flat) location will be our base camp for the rest of the journey. Most likely we will spend Tuesday practicing rescue techniques, strategizing, and getting used to the altitude.
-Summit attempt(s) will be up-and-back from Emmons flats, probably leaving camp at 1AM or 2AM. It will take an estimated 7-9 hours to reach the summit, 3-4 hours to descend back to camp. A LONG day.
-One web site describes the route this way: "From Emmons Flats, ascend the glacier to "the Corridor," a prominent glacial feature that rises higher than the rest of the Emmons. Access the Corridor from 10,000 ft to 10,300 ft depending on the year. The Corridor tops out at 11,200 ft. At this point, the route becomes steeper (30 to 40 degrees) and will take a variety of directions depending on the year, glacier movement and snowfall. It is not uncommon to traverse over on the Winthrop and ascend its shoulder to the Bergschrund. This crevasse is the usually the highest on the mountain and may involve down climbing and belays to cross. Frequently it can be circumnavigated however there have been times when climbers traversed around to the Disappointment Clever route. Access the crater rim at 14,250 ft. It's a short southwesterly walk from here to the true summit and climber register."

The Mountain is Out (Again)

2008-06-17T15:31:00.009-04:00

Click above image for (much) larger version (Flickr photo by Stephbu).

To have a look at the general view of our climbing route from Camp Schurman at Steamboat Prow to the summit, GO HERE and hold your mouse over the image to display landmarks.

Years ago (when The Kingdome still existed), Seattleite Bruce Barcott wrote an homage to Mount Rainier that tried to capture its mystique. I'm not sure that it does, completely, but it comes close (excerpt):

When it rises like a misshapen moon over downtown Seattle, the mountain entrances me, arrests my attention, and rouses my imagination; it makes me weave on wet highways.

On early mornings Rainier wakes above siesta-rate motels on Highway 99, above the waterfront's dromedary cranes and the grey dimple of the Kingdome, above the Space Needle and the Columbia Tower and Tokyo-bound 747s and everything that lives and everything that doesn't, as far as the eye can see. Rainier wakes higher than most of the air we breathe. The sight of it has nearly killed me. More than once its spell has been broken by the headlights of an oncoming car bearing down on my southbound self speeding along the northbound lane. The mountain never appears in the same place with the same face twice. It possesses a Cheshire talent for appearing and disappearing at will. From the highest hill it may lie shrouded in mist, only to show itself an hour later from the middle of Puget Sound. People who have lived in the Pacific Northwest all their lives still stop and stare when Rainier reveals itself. The moment crackles with the thrill of Nature being caught unaware, like seeing an eagle snatch a sockeye from the Sound. On clear winter days the Olympic and Cascade mountains flank the trough of Puget Sound like a fence of whitecapped waves. We've got mountains like Iowa's got flat. And yet the local vernacular admits only one "Mountain," and when Rainier rises we tell each other, "The Mountain is out." Mount Rainier is at once the most public symbol of the Pacific Northwest and its most sacred private icon. A friend once disclosed that she says a prayer whenever she sees it. A stranger I met on its high southern flank told me, "You must love this mountain as much as I do," but his reverent tone of voice told me I couldn't. Lou Whittaker, who has climbed Rainier more than one hundred fifty times, told me about returning home from a Himalayan expedition and catching sight of the mountain and feeling it snap his breath clean away.

Like rain and rivers and trees, the mountain is a continuous presence in our lives, but in our psychological landscape it occupies a place separate and greater than the forests and falling water. We look at Rainier and feel love for a mountain, if such a thing is possible. The mountain inspires in us a feeling akin to spiritual awe: reverence, adoration, humility. We look at Rainier and regard the vastness of God; yet we look at it and claim it as our own. This strange relationship we have with the mountain is romantic, uninformed, even presumptuous. Rainier is a mountain few of us know.

"The Mountain is Out," By Bruce Barcott (complete version)

[Flickr photo by mraaronmorris]

Today's Normal

2008-06-15T16:52:00.000-04:00

I've been thinking a lot lately about what "normal" used to be in our lives, and how it compares to today's normal.

To say something I've said before: Fergus' treatment was relatively straightforward and free of "complications" (as they are euphemistically called). And the worst part of the last 11 months (off treatment) has been the paranoia and neuroses that sometimes creep in to life. All in all, though, this has been relatively smooth sailing. Today's normal is certainly not the same as pre-leukemia normal, but we've done okay. And we are grateful that the last 11 months have been "event-free" (to use another cancer-world euphemism).

I was touched recently by a Listserv posting by a mother whose son finished treatment for Neuroblastoma several years ago. You can tell their road has been hard, even post-treatment, but there is grace in their approach to life now, and I am grateful for their example. At the same time, it's telling that nearly a decade after her son finished treatment, she turns to other cancer families to partake of "the aftertaste of treatment." It's a reminder of the war-like nature of cancer treatment; when it's over, we all gather at the VFW hall for a cheap drink and a smoke. And commiserate with the ones who understand.

I'll quote Mary Beth's post in its entirety (with her permission):

To: PED-ONC-SURVIVORS@LISTSERV.ACOR.ORG
Sent: Thu, 5 Jun 2008 7:12 am
Subject: Re: [PED-ONC-SURV] Life after treatment ??

Good Morning Fran,

I also wanted to share my congrats because it is
such a miracle to get to that point one is "off
treatment." My son is a neuroblastoma survivor and
we had so many side effect issues once he was off
treatment, that treatment simply adjusted to those
things. It took two years before those symptoms
subsided. Or maybe I should say "settled out." We
have lasting effects. He has mod-to-severe hearing
loss, he has only one kidney, he still only eats a
very bland diet. He experiences horrible migraine
clusters. That is the way it is - our normal. Off
treatment for us was eight years ago. Josh's body
has changed, has matured, and the chemo shows its
effects. He's entered puberty early. New thyroid
concerns have revealed themselves. His hearing loss
has become active again and he is losing slightly
more hearing. These types of side effects are both
a trumpet and a whisper to me. They are issues that
seem unfair to a sweet boy who already has endured
so much. And he is mature enough to be angry,
depressed, frustrated with it all. He is a young
boy trying to make sense of all that is happening to
him. And the emotions sometimes become intense.
But.....it is all a whisper to the sweet melody of
living with him. Back in treatment, our onc told us
not to worry about side effects as one has to be
alive to have them. And we are gifted this
incredible miracle of still having Josh with us. He
is a light in this world who has some incredible
living to do. And he does it, with the wisdom that
seems to be of someone 80. His spirituality, his
maturity, his sensitivity, his idealism is
mesmerizing. He inspires adults that we know who
battle their own medical issues, and roots them on
saying "If I can do it, so can you!" Life is
sharper after treatment, more intense, more
brilliant. We treasure it all: the blues of the
sky, the butterflys, the fireflies, the soccer games
the time on the beach with friends. Cancer took
with it the worries/concerns/anxiety of normal life
with it. It has left us with a strong connection to
what living is really all about. For better or for
worse. The aches of treatment for me haven't
disappeared, but they are packed away and only
resurrect once in awhile. But they are softened by
the wonder of today and what the day's glory will
bring.

It is lists such as this one that I find the added
peace of being with those who understand. My
friends and family are a wonderful support, but for
them so much of this is behind them. It is this
group that understands the aftertaste of treatment.

Wishing your granddaughter and your family healing
for all you have endured, and good health for many
years to come.

Mary Beth
Mother of Josh, 1/99 dx NBIII, 8/99 NED to present!

Emmons Route Report: June 12

2008-06-15T10:16:00.005-04:00

Despite the recent heavy snows, it sounds like the Emmons Route is in good shape, according to the climbing rangers. An excerpt:

"The storm passed and the climbers came out. Over the past few days, the weather turned out to be exceptional. Climbing Rangers climbed the Emmons route on Thursday finding the conditions to be great cramponing with some wind loaded slabs, all of the slabs were easy to avoid and had actually filled in some of the crevasses that were starting to yawn open 2 weeks ago....Overall the Emmons is in excellent shape with great climbing all the way to the summit. With high pressure moving in this week now is a great time to climb."

Happy father's day.

The F45RC1 Mount Rainier Playlist

2008-06-14T21:15:00.004-04:00

Living outside of Montpelier, Vermont (with young children) is not conducive to hearing a lot of great new music.

Confession: I say this as I listen to "Classic Rock" radio right now (What is this song? I know it but I can't place it: an instrumental by...Styx or the Electric Light Orchestra?)

Oh! Now they're playing Cheap Trick's "I Want you to Want Me," which can't help but bring a smile to my face. Cheap Trick--with drumwork by one of the best fake-names in rock and roll: Bun E. Carlos.

Erp, even my digressions have digressions.

The point is, you have to work around here to hear any unfamiliar music or even to meet some unfamiliar people. It's a problem.

One solution to this problem is the so-called False 45th Record Club, which basically works like this:

Readers of a locally-written music blog (most of whom are strangers to one another) submit a couple of songs they'd like to share, and these get randomly compiled into a playlist which gets unveiled (and heard) a few days later in the upstairs bar of a local restaurant, at the first meeting of the False 45th Record Club.

And sure, it was a little awkward at first; I didn't know anyone there, unless you count the librarian who used to read the kids books at storytime when Gus was two. But it ended up being a good time. I met some interesting folks, heard some good music, and saw a guy do an impression of my accordion teacher--true small town stuff. Thanks to Brian for cooking the whole thing up (and for the commemorative CDs). I'm looking forward to the next meeting, tentatively scheduled for September.

And with that, I bring you the CureClimb 2008 theme music, courtesy of F45 Record Club #1 (my submissions were songs #11 and #36):

Tour of Our Route: July 2007

2008-06-13T18:12:00.010-04:00

For those of you with a lot of time on your hands, you can get a good sense for our route up the mountain (White River Campground > Glacier Basin > Inter-Glacier > Camp Schurman > Emmons Flats > Summit) by starting here...and clicking through the next (and next and next) image in the "photostream" (and no, I don't know these people). In other words, when you get to the starting picture ("And We're Off"), click the area I've circled in red on this little snippet (and so on):

Sunrise at 12,000 Feet

2008-06-13T15:43:00.006-04:00

Stumbled across this view of sunrise from the Emmons glacier on Mount Rainier. Little Tahoma in the background. Lovely. Many thanks to Jake at MountainWorld Productions for use of the image.

Here we come. Soon enough.

Childhood Cancer Act Passes Through US House of Representatives

2008-06-12T14:52:00.003-04:00

This just came in from the folks at CureSearch:

Dear Friends:

A great day in the fight to conquer childhood cancer, our legislation just passed the U.S. House! The final vote tally was 416-0.

Please post and disseminate as far and wide as you can. We at CureSearch are grateful to our wonderful grassroots community for spreading this wonderful news!

The more awareness we do now, the easier we will make it for passage in the Senate.

Here is the CureSearch press release:

CureSearch Praises Passage of the
“Caroline Pryce Walker Conquer Childhood Cancer Act”
in U.S. House of Representatives

Children with Cancer and their Families to Benefit from Landmark Legislation

June 12, 2008 (Bethesda, MD) – CureSearch National Childhood Cancer Foundation salutes the United States House of Representatives for passage of H.R. 1553, the “Caroline Pryce Walker Conquer Childhood Cancer Act,” which promises to significantly increase federal investment into childhood cancer research.

During markup of the legislation, the bill was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in memory of Caroline Pryce Walker, daughter of Congresswoman Deborah Pryce (R-OH), who succumbed to neuroblastoma in 1999 at age nine.

The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatments and research for children with cancer and their families.

“For far too long, children suffering from pediatric cancer have gotten short shrift on federal resources,” said Pryce, original author of this groundbreaking legislation.

“The bill we passed today dramatically expands federal investment into childhood cancer research and education, and will make an historic difference in the lives of the more than 12,000 children who will be diagnosed with cancer each year. A nation with our resources, our scientists, our committed doctors and oncologists, and our inherent and insuppressible fighting spirit can and should do more to put an end to so much suffering.”

Congressman Chris Van Hollen (D-MD), one of the original co-sponsors of the Carolyn Walker Pryce Conquer Childhood Cancer Act, stated that conquering childhood cancer has transcended partisan politics, and addresses a critical national issue that is finally receiving the attention it deserves.

“I am pleased that the House passed this important legislation, which will bring us one step closer to eradicating pediatric cancer,” said Van Hollen. “This bill will enhance and expand pediatric cancer research activities at the National Institutes of Health, establish a pediatric cancer registry, and increase informational and educational outreach efforts to patients and families affected by pediatric cancer. No child should have to experience and suffer the effects of cancer, and no parent should have to see their child suffer.”

CureSearch supports the life-saving research of the Children’s Oncology Group, the world’s premier cancer research collaborative. Treating 90% of children with cancer, the Children’s Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children’s and university hospitals across North America.

"The Caroline Pryce Walker Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer,” noted Gregory Reaman, MD, Chair of the Children’s Oncology Group. “Only research cures childhood cancer. On behalf of my colleagues in the Children’s Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our Congressional leaders.”

“On behalf of CureSearch, we applaud the steadfast leadership of Representatives Chris Van Hollen and Deborah Pryce and their colleagues in the House who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority,” said Stacy Pagos Haller, Executive Director, CureSearch.

Companion legislation in the United States Senate (S.911), sponsored by Senator Jack Reed (D-RI), cleared the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously in November, 2007. The Senate version of the Conquer Childhood Cancer Act currently has 63 co-sponsors; a full Senate floor vote on the bill is expected this summer.
# # #

About CureSearch

CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children’s Oncology Group (COG), the world’s premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,000 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.

You're not the Only One

2008-06-10T18:30:00.006-04:00

Hey, it looks like I have a short piece in a (quasi-homemade) compilation of blog writing, "You're Not The Only One."

See the description I wrote back in February.

My thing was a relapse-fear thing. So you know, buy one. Because everyone loves that sort of thing.

Proceeds support War Child.

Thanks to Angus for the tip.

This Week's Poster Boy?

2008-06-10T09:22:00.003-04:00

Have a look.

I've never been a poster boy before. Are there higher standards I have to live by now? Do I have to stop swearing so effing much?

Will PosterBoyHood change Rob Ryan?

Forecast: 7 Below Zero (F) + 45 MPH Winds....

2008-06-09T18:29:00.001-04:00

...I don't even WANT to know what the wind chill factor comes to....

...HEAVY SNOW WARNING IN EFFECT FROM 6 PM THIS EVENING TO 8 AM
PDT TUESDAY...

.MONDAY...RAIN AND SNOW. SNOW LEVEL 6000 FEET. 
.MONDAY NIGHT...RAIN AND SNOW SHOWERS...HEAVY AT TIMES. UP TO 15
INCHES ACCUMULATION. SNOW LEVEL LOWERING TO 2500 FEET BY MIDNIGHT.
.TUESDAY...SHOWERS. TOTAL SNOW ACCUMULATION 6 TO 20 INCHES. SNOW
LEVEL 3500 FEET. 
.TUESDAY NIGHT...MOSTLY CLOUDY WITH A CHANCE OF SHOWERS. SNOW
LEVEL 5500 FEET. 
.WEDNESDAY...MOSTLY CLOUDY WITH A CHANCE OF SHOWERS. SNOW LEVEL
7000 FEET. 

&&
TEMPERATURE AND WIND FORECASTS FOR SELECTED LOCATIONS.

                       MON    MON    TUE    TUE    WED  
                            NIGHT         NIGHT        

SUMMIT   (14411 FT)      7     -6      6      8     10
                      W 51  NW 45  NW 39   N 30   N 28

I take it back: It's NOT Simply There

2008-06-08T10:36:00.000-04:00

I've been mulling over the excerpt I posted the other day from the Boston Globe, in which Judy Foreman wrote:

"Fight, Ted, fight!"

This mantra, chanted over and over to give moral support to Senator Edward M. Kennedy as he faces brain cancer, drives me nuts. The caring behind it is wonderful; the metaphor is not.

Cancer is not a football game. It's more of an involuntary dance with a partner you didn't choose, more judo than battlefield warfare....

It calls to mind Susan Sontag's book-length essay, "Illness as Metaphor," in which she argued that cancer--like tuberculosis in the 19th century--too often serves as a metaphor to explain outward ills of the world and inward failings of the person. To quote from our dear anonymous friends at Wikipedia:

Sontag shows how both diseases have become associated with personal psychological traits. In particular she demonstrates how the metaphors and terms used to describe both syndromes lead to an association between repressed passion and the physical disease itself. She notes the peculiar reversal that "With the modern diseases (once TB, now cancer), the romantic idea that the disease expresses the character is invariably extended to assert that the character causes the disease – because it has not expressed itself. Passion moves inward, striking and blighting the deepest cellular recesses."

The Judy Foreman piece had resonance, probably, because to chant "Fight! Fight! Fight!" at Ted Kennedy and his newfound brain cancer seems so over-simplistic, naive, and ultimately self-serving. And, you know, you get a certain amount of this from the world at large when you become "a cancer family": the naivete, the sentiment that serves the teller more than the receiver, the ill-conceived advice, even the simple blameless not-knowing-what-to-say of it all. I say all this knowing that I could say harsher things, and yet even these may have overstepped, broken the contract that insists on careful civility--on both sides, really; the cancered and the cancer-free. But I digress.

Resonance.

On the other hand, how can something like cancer--so difficult to get your head around when it happens to someone you love, so mysterious in its causes and outcomes--how can it not take on aspects of metaphor? I mean, look at this Mount Rainier climb: the whole thing is a metaphor. Indeed, even as Judy Foreman argues that cancer is not a metaphor, that "it's simply there," she uses metaphor to try to explain cancer's true nature: it's not warfare, it's judo, it's an involuntary dance with a partner you didn't choose.

Metaphor, like some poetry, reveals its truth by misdirection or sleight of hand, and sometimes it reveals a deeper truth in doing so. And as we dance around the elusive truths of cancer we're trying to uncover (or simply describe) something about it that can't be uncovered directly. But yelling "fight! Fight! Fight!"???? More than anything, this metaphor fails because it doesn't do justice to the complexity of cancer. We're all trying understand the nature of cancer, and to know how to respond to it. But it's clearly not a football game, and chanting at it is simply inane.

So is "climbing it," for that matter. And calling this blog "Cureclimb" is, in itself, kind of inane. We are not going to cure cancer by climbing Mount Rainier. But as a personal act (by the father of a leukemia kid), this climb "works" for me, metaphorically speaking. And I am grateful to everyone who has chimed in with words of support, donations, advice, whatever. One climb will not cure cancer. But hopefully we'll get there, eventually, and cancer can stop carrying all this metaphorical baggage around. A disease, or a set of diseases; preventable, treatable, survivable. THEN it will simply be there.

Rainier Backcountry Trails and Backcountry Report: 6/5

2008-06-07T09:42:00.002-04:00

Be prepared for winter conditions. Check avalanche and weather conditions prior to your visit to the backcountry.
NOTE: As of June 2, 2008, there is about 11.5 feet of snow on the ground at Paradise (elev. 5,420 feet). The park received heavy snows this winter and spring with approximately 900 inches of snow at this point. This could lead to a late-lingering snowpack that may well affect the early hiking season in that it will make navigating early season hikes quite challenging. Avalanche danger will be a concern in early season as well.

Crevasse Rescue Training: The Bob Report

2008-06-06T08:02:00.007-04:00

Last weekend, Bob headed up to Mt. Rainier for more alpine training. Here's his report (image: Mount Rainier Cam, June 1, 2008):

Crevasse training was way cool, downright chilly in fact. Michele and the kids came down with me and spent the night. We went to Northwest Trek on Saturday and saw all the wild animals there. That was fun. We went up and hiked around some at Longmire and watched the pools bubble up. I had to carry the sleeping Henry - the boy refused to nap earlier - and now he couldn't keep his eyes open to check out the deer munching about. Not as heavy as our packs will be, nor as steep of a trail, but a start.

I was better dressed this time with lightweight nylon pants that the legs zip off to make shorts. Didn't do that, too cold and not a speck of blue sky. I was concerned that I would be underdressed, not so. Our guide was in a hurry to get up to where we could practice and I was soon sweating like an overworked peasant farmer. Plenty warm, shed the hat on the way and I remembered to put the hat back on when we got up to the precipice at about 6600 feet. I still need to figure out a sweat management system to keep my glasses from fogging up and becoming useless. Even remembered to reapply sunscreen frequently and happily my head didn't fry.

Before we took the bus up to Paradise, we spent an hour practicing knots, prussic, overhand, figure eights, clove hitch, etc.. At the precipice we started out building ERNST (Equalized, Redundant, No slack, Secure, & Timely) anchoring systems, dead men buried in the snow, stakes driven in, lashed together with rope and carabineers (scratch your nose, don't pick it...).

We then broke up into teams of three with one of us falling over the edge and the other two arresting our fall and rigging up the ropes to pull us up to safety. Single pulley, Z pulley, all pretty cool stuff. A little head scratching trying to remember which end of the rope to pull on after running it through pulleys and such and not let the pour sod dangling over the edge down any more. Realized that I need some more toys and chunks of rope so that I can practice pulling furniture around the house.

The weather was not quite miserable, but it was blowing, raining, and sleeting intermittently. Visibility started out at about 100 yards on the way up and shrunk to about 10 yards on the way down which led to an interesting trip down the mountain. We dropped into a bowl a bit prematurely and had to hike back up to get a better track down to Paradise. It was eerily quiet as we scrambled along trying hard not to lose sight of the person in front of us. We all made it safely back to the bus and made it back to RMI.

Back at RMI they had ropes hanging from the rafters and we practiced climbing up the rope using prussic slings. Felt a bit like Bond, James Bond (and Jim Whittaker) when he used his shoe laces to climb. Henry was cheering me on yelling "Yes! Dad, Did it!" as I rang the bell - that made the whole thing worthwhile, that and the big high five he gave me.

...To which JohntheClimbingMentor replied:

Wow-sounds great, Bob. Rob can regale you with our Vermont version of same, dangling from the warm and dry fly grid 30 feet over the Hyde Park Opera House stage. Thought I'd lost Rob in the lobby for a minute or two, but eventually we did manage to make it out the front door....

Hyde Park Opera House:

Emmons Route Report: June 3

2008-06-05T17:53:00.006-04:00

(Compare this Emmons report to this grizzly Liberty Ridge route report from Mid-May...this is a route John is interested in--not for Rob and Bob!)

The trail from White river campground to glacier basin has patchy snow coverage until your about 1/2 mile past Sherwood forest then it becomes consistent snow all the way to the glacier. There was a slide this winter that may provide some route finding issues before you enter Sherwood forest. If you follow the yellow caution flagging to this slide, continue straight across climbing through some of the debris you will soon find the trail into the forest. The route from camp Curtis to Schurman is very straight forward, but crevasse hazard still exists.

After the road to White River campground opened last Friday,> many people came up to take advantage of the warm sunny weather. There were a good number of parties up also trying to make the first ascent of the Emmons in 2008... .One party over the weekend reached a high point of 14,000 until one of their members took a crevasse fall and they decided to turn around, thankfully the climber was uninjured.

The route from Schurman is mostly in early season conditions. There is a large crevasse climbers will have to negotiate at the top of the corridor. From that point the route continues right onto a nice open slope, around another set of crevasses, continuing to the right crossing the bergschrund and finally toward the summit. Most parties have not had trouble ascending the route but seem to become confused in their descent, winding up in places they would rather not be. Wands could be helpful in route finding but remember to remove all the wands you place. Stay tuned for further info and photos to arrive soon. Rangers climbed to 13,000 on Thursday the 29th, conditions were unconsolidated powder with little to no crust. As the mountain warms up things will start to consolidate, until then expect post holing conditions. On the upside the skiing is fabulous on the Emmons.

(Source)

Meet the Team: JohnTheClimbingMentor

2008-06-05T13:39:00.004-04:00

Vermonter John Dunn, our mentor and informal climbing guide on this trip, lives in a lovely old house at the foot of Mount Mansfield, where he services his ancient car, tinkers in the barn, taps maple trees, wields a chainsaw, and does things like take his tractor apart and put it back together (he does that in the barn, not in the lovely old house). For his next impossibly old car I think he's planning on one that runs on vegetable oil.

An emergency room doctor by trade (where he once treated a "body packer" with $1.5 million worth of heroin, um, onboard), John loves the theater, and he is quite active in the Lamoille County Players, who perform in the old Hyde Park (Vermont) Opera House: acting, set building, and direction. He's also appearing in an upcoming film by local acting/farming hero George Woodard.

John has a good deal of rock-climbing and mountaineering experience (happily), and when I asked what his scariest mountaineering moment was, he nonchalantly said:

Caught in small avalanche during winter traverse of Colorado's Ten Mile Range late 1970's. Carried a couple hundred yards or so, banged up but nothing serious.

And his wife said this:

I'm not sure for him but the time I recall vividly was rock-climbing together in the foothills of Denver. He was leading a climbing pitch and developed his classic migraine headache. His syndrome includes losing his vision for a period of time before the onset of the headache. I had to stand on that cliff wall and wait for his vision to return before he was able to belay me up to the stand....

--A statement that gives me the willies. Classic migraine headache? Syndrome? Losing his vision for a period of time? These are phrases that should not be bunched so closely together, especially in the context of standing on a cliff wall and waiting for his vision to return. Yikes.

I asked, "And why climb with Rob and Bob? Is it true we're just counterweights in case of a crevasse fall?"

To which the answers were:

John: Why climb with Rob and Bob? It's fun to watch them. Just kidding! Seriously, it's very satisfying to share in someone else's discovery of the joys of mountaineering, and I love Mt. Rainier. And yes, you will make good counterweights and human bridges for my glorious and successful ascent...

Linda: I don't think of you as counterweights for crevasse falls because you guys will probably go first. That means that you will be the ones to fall into the crevasse. That's ok because he will be more likely able to rescue you than the other way around.....

I guess Bob and I should be reassured by these answers(?)

Luckily, as I say, he has a lot of experience (which should help compensate for his tendency toward sudden blindness). And I think we're in good hands. His major climbs include:

Nepal: Chulu East (about 21,000')
Europe: Mont Blanc, La Dent du Requin
New Zealand: Aoraki/Mt. Cook
Mexico: Orizaba (18,000'), El Popo (17,000'), Izta (17.000')
US: Denali (20,320), Mt. Rainier, Grand Teton, Long's Peak, Half Dome, Mt. Mansfield, etc.

(images of some of these peaks below)

New Normal Old Normal

2008-06-03T10:13:00.006-04:00

It was so hard at first to get Fergus' oral chemotherapy into him. Nausea plus nasty-tasting drugs do not make for a happy mix. Dexamethasone syrup made him vomit, and mostly he hated all the other syrups too. But we found an old mortar and pestle in the back of a kitchen cabinet and, with trial and error, we figured out just what drug had to be ground up and mixed with what flavor yogurt (or whatever) in order to get the stuff into him. Finally, somehow, he learned how to swallow pills--sometimes as many as 9 at a time. And as often as 3 times a day we would come to him with a handful (or a dixiecupful) of pills and a glass of water. He'd pop them into his mouth with just a glance and swallow them down.

Another day, another x milligrams of toxic chemicals.

I swear, even today I could walk up to him with a glass of water and get him to swallow anything remotely pill-shaped. Small pebbles. LEGOs. Cat food nuggets. Diamonds.

Not that I've tried any of these tricks. Or own any diamonds.

But there are times when the sheer routine of such moments--putting chemotherapy into your child, holding him still while someone sticks a needle into his chest, recording in a notebook every medication given, every bowel movement done, every variation in body temperature--can be shocking.

As Isabel's mom wrote this week:

Tonight was just the same as ever, nothing out of the ordinary. But, that’s what got me. Our “ordinary”. I stood there, washing the syringe and realized that my daughter hasn’t complained about taking the medications each and every night in over a year. She simply takes it and takes it and takes it. It’s not normal. It’s not okay. It’s not fine. It’s scary and upsetting....

So very true. After treatment ends, a different, better kind of normal starts to take over. But, I think, never completely.

About the Marathon

2008-05-31T09:01:00.007-04:00

By the way, the marathon went much better than I thought (or feared) it would (maybe this bodes well for the Rainier climb?). My time was about 4:20. I never even felt any tightness in my IT Band. And while my legs did start to cramp up a bit after the dreaded "Assault on Battery" at mile 15, by slowing down a bit it never progressed to the wrenching-and-stumbling pain that it did at the Cape Cod marathon. For this I should probably thank Michael Quinn, who paced us well throughout the race, and maybe to the massive doses of "NUUN" that I ingested in the last few days before the race.

Once again, I was the only marathoner running in cutoff khaki pants with pleats.

The day's miracle, however, went to the third runner in our group, Peter Newberry, whose training program maxed out with a 12-mile run, fell behind Michael and I at about mile 6, and was pretty much left for dead, but somehow still finished the marathon about an hour after we did. We were standing around the finish area wondering about all the ambulance sirens when Lauren spotted him crossing the finish line. Amazing.

It's Simply There

2008-05-29T16:33:00.001-04:00

In the May 26th Boston Globe, health writer Judy Foreman reacts to the (particularly American?) reaction that some people have to cancer news (excerpt):

HEALTH SENSE
'Fighting' isn't how you deal with cancer

By Judy Foreman | May 26, 2008

Fight, Ted, fight!"

This mantra, chanted over and over to give moral support to Senator Edward M. Kennedy as he faces brain cancer, drives me nuts. The caring behind it is wonderful; the metaphor is not.

Cancer is not a football game. It's more of an involuntary dance with a partner you didn't choose, more judo than battlefield warfare.

It's not that I think that Ted Kennedy should sail quietly off into the sunset with the word "ACCEPTANCE" emblazoned on his shirt. Certainly not yet. I think he should, and no doubt will, muster his considerable intellectual, emotional, spiritual, political, financial, familial, and social power to deal with his cancer on all fronts.

And when the time to die comes, as it clearly will someday for him, just like the rest of us, that too can be faced with grace, not guns. I've seen a dear friend do it. I've seen my mother do it. I've seen my husband do it.

The fighting metaphor is insidious because it subtly and not so subtly implies that if you fight, you can "win." And if you don't fight hard enough, you "lose" and are therefore a "loser." In truth, cancer doesn't care whether you fight or not, whether you win or not. It's simply there, just like all the other horrible, debilitating, scary, painful, life-wrecking chronic diseases that millions of Americans deal with every day.

This fighting thing is so American, isn't it? We think of the world as populated by good guys and bad guys. We believe so naively in our power to triumph over adversity, not just as a moral value but as a life-saver. We think a "good attitude" improves survival, while pessimism begets failure and death. But studies show that, while optimism may feel better than pessimism, it rarely, if ever, affects outcome.

And that's a good thing, not a bad one, because it takes away the guilt of feeling so responsible for everything -- the mistaken belief that we have more control over our fate than we actually do....

Our Story: Take Two (Lauren's 9/2007 Radio Interview)

2008-05-28T22:30:00.004-04:00

My wife Lauren is far more articulate than I am. End of story. This is as good a time as ever to let her have her say.

Please have a listen to this 9/19/2007 interview she gave to Vermont Public Radio's Mitch Wertleib (MP3 version), starting with the question, "How did you feel when you first learned that your son had leukemia?"

On a related note, if you're in the U.S., please urge your elected representatives to support the Conquer Childhood Cancer Act of 2008. You can write them a letter about it here. The act, which provides specific funding for childhood cancer research, is currently under consideration by both the House and the Senate.

1979 To 1997

2008-05-27T07:59:00.006-04:00

Here's another non-sequitur for my loyal readers. Almost 30 years ago a man named Jamie Livingston started taking Polaroid pictures, one per day, and saving them. My friend Svenja, who knew Jamie Livingston well, is in quite a few of these pictures.

Sometimes incidental, sometimes carefully composed, these images capture intimate moments in time. Looking through them is voyeuristic, sometimes kitschy, and often resonant for anyone who lived through the period 1979 to 1997.

Ultimately these pictures are haunting.

Jamie's Polaroids have been on the web for awhile, but a couple of days ago they were also "discovered" by an online writer for "mental_floss" magazine, who wrote a short piece about his discovery (with sample photos) a couple of days ago. An excerpt:

"Yesterday I came across a slightly mysterious website — a collection of Polaroids, one per day, from March 31, 1979 through October 25, 1997. There’s no author listed, no contact info, and no other indication as to where these came from. So, naturally, I started looking through the photos. I was stunned by what I found...."

Jamie Livingston died of cancer on October 25, 1997; it was his 41st birthday.

First 2008 Report From the Emmons Route

2008-05-26T23:43:00.003-04:00

Here's the first climbing report I've seen this year for our planned route up Mt. Rainier (White River Campground > Glacier Basin > Camp Schurman > Emmons Glacier > Summit)(Source: Mt Rainier Climbing Rangers):

Emmons/Winthrop Glacier approach: May 24th, 2008

The road to White River is still not open due to the large amounts of snow removal required this year, and as a result the approach to east side routes has become very long. Parties should allow between 6 and 10 hours just getting to Glacier basin. (See road conditions for current information)

Although the Glacier Basin trail is still covered by multiple feet of snow in most places, this allows fairly easy travel with skis since most of the fallen trees and streams are still under the snowpack. Expect conditions to change quickly as the weather warms and the snow continues to melt. There have been a few parties hiking in but there is no real boot track to follow, so be prepared to do some route finding on the way in. There is some bright yellow flagging in some less obvious areas of the trail, but much of the route is unflagged.

The route up the Inter Glacier to Camp Schurman is very direct right now with only one visible crevasse. The skiing in this area is excellent and with the longer approach people could have a less crowded wilderness experience if they are willing to work a little harder.

Let's hope they get that road plowed between now and June 22nd. These pictures of road clearing efforts this Spring at Cayuse Pass (a few miles from our access road) will give you some idea of what they're up against.

Marathon Results (Sunday 5/25)

2008-05-25T08:00:00.003-04:00

Sunday's Vermont City Marathon starts at 8AM. For those of you curious to see if I survive, race results will be available here sometime after the race is over.

Incidentally: Jon Lester

2008-05-20T16:40:00.003-04:00

Three hurrahs for Red Sox pitcher Jon Lester, who not only went to my friend Marj's high school in Tacoma, Washington (West of Mt. Rainier), but who came back from an August 2006 Lymphoma diagnosis to win Game 4 of the 2007 World Series and, last night, pitch a no-hitter against the Kansas City Royals.

Is there a Jon Lester bobblehead? If so, I should take it up the mountain.

Did I Mention...

2008-05-20T15:39:00.005-04:00

...that I have shingles? Yee haw.

Can I reiterate, also, that I'm running a marathon in 5 days?

Let's see: Shingles + Marathon = what???

Pain? Damage? Glares from strangers in the showers?

(For some reason I seem to get those glares all the time anyway.)

I hope there aren't any lasting ramifications. A month from now I'll be headed West.

The Bob Mountain Report

2008-05-20T08:56:00.004-04:00

Mt Rainier from Paradise Rd, 5/15/08
Photo by © jdm_photo - Jeff McCrory

Bob spent the other day on the Southern flank of Mt. Rainier, near Paradise, learning how to slide down a mountain (and self-arrest with an ice ax). Here's his report:

Freezing level today was around 15,000 feet. At 5,000 feet, at Paradise, it was a scorcher. In the sixties somewhere and I wasn’t properly dressed. Ended up shedding my hat on the way up. Big mistake. Top of my head is tender to the touch, face and neck (liberally applied SPF 30 with zinc oxide) are bright red. Nice raccoon eyes. Gortex is good for sliding, but not for general wear. I’ll be shopping for better pants to wear up.

It felt good, however, to be up on the hill and practicing. I liked the notion of a steady measured pace heading up and down. Goes against my nature (evidenced by the knee episode) of just powering through, but does make the whole process seem more doable. Sliding down the hill was fun and doing the arrests was a great way to cool off, especially since I forgot to zip up the sides of my pants the first time town.

Two weeks and I go back up and see if I can learn how to pull Rob out of a crevasse (or be pulled out myself).

It's worth noting that in Vermont yesterday the freezing level was around 1500 feet (not 15,000 feet), with new snow on the hilltops....

It's also worth noting that this is today's view from Paradise:

Late Night Leg Pain Blues: A Short Annotated History

2008-05-10T22:27:00.011-04:00

When it first crops up, leukemia can present itself in all sorts of ways. Physical tiredness or lethargy. Bruising. Cuts that don't heal. Fevers. Deep bone and joint pain.

A month or more before Fergus was diagnosed (the timeline is murky) he claimed one day that his legs no longer worked. He was 4 years old. I remember him crawling from the car to the front door that afternoon, and sliding around the hardwood floors of our house that evening before bed. Somehow (and I wince when I admit this) I chalked it up to something like melodrama, or the side-effects of a very active imagination. The next day he seemed fine.

And yet a few weeks later it happened again, this time when Lauren took him and Norah to a science museum for the afternoon, and he spent the day wheeled around in a stroller.

By then, or soon after then, there were other warning signs too--illness, appendicitis-like stomach pain, unexplained anemia. It's a long story.

The day he was diagnosed, though, he was essentially free of symptoms. No fever. No aches or pains. That afternoon, our world turned upside down by the 20-ton thud of that word--leukemia--dropping into our lives, we lobbied successfully to take Fergus home for the night, to regroup before checking our little boy into the hospital for treatment.

That night, the bone pain returned for Fergus, deep and awful. We were awake all night, with Fergus begging us again and again to make the pain go away. We could not.

Fergus is 8 years old now. He has been off-treatment for almost 11 months. Lauren noticed him limping a little this morning, and asked him about it. He said something about stubbing his toe last night when the babysitter was here, or of twisting his foot somehow. He wasn't very specific. Lauren and I looked at each other briefly, then moved on. Then late this afternoon he said something about his other leg hurting too, but he couldn't really point to the exact source of the pain. Again, he wasn't very forthcoming when we asked about it. Lauren looked at his foot, but couldn't isolate any painful spots.

Fergus left the room to go about his business (getting ready for bed or whatever), and Lauren and I stood there in the kitchen looking into each others eyes. A small smile (wry? wan?) passed between us. We are so fucking powerless before this disease. Are these just the normal pains of an 8 year old boy re-learning how to run and jump and dance? Or is this the relapse, the cancer coming back? We have no way of knowing for sure.

I mean, what can you do? You shrug, sort of. Or smile that war-zone smile. And stand in the kitchen and hug.

This is supposed to be the easy part, you know? Shit, this is the easy part. And yet, the smallest of things (like--oh god--the smell of the hospital cafeteria yesterday, as Lauren and I walked by on the way to an appointment of hers), the smallest of things can trigger these emotions, put us on high alert, remind us again that we are still on the leukemia-family side of the fence.

Look, Fergus is probably fine. As far as we know (knock wood, cross your fingers, praise the deity of your choice) he could be done with cancer, and cancer done with him. There are so many other kids who are struggling with relapse, or complications, or worse. Honestly, we've had it pretty easy. We are the lucky ones. And yet, this is still Life During Wartime, and we can't just relax into our lives.

Elsewhere, kids have died this week of cancer. Lots of kids--someone else could give you a number; not me. Other little boys or girls have just been diagnosed, and their families are reeling, their parents near passing out (as I was) at their child's bedside. And children all over the world lie in hospital beds, or visit their local clinics, and toxic agents are passed into their stomachs, their veins, their spinal fluid. It's a crude approach in a lot of ways, but it's the only thing that they know to do. It needs study, refinement, more study, breakthroughs large and small.

Obviously, there are a lot of problems in the world. But please consider throwing your ten bucks at this one.

I'm just saying.

Non Sequitur in Yellow and Brown

2008-05-09T09:17:00.003-04:00

For Angus.

Day 2 And Beyond

2008-05-07T22:19:00.001-04:00

Abstract art? No, just Day 2 of our climb.

View Larger Map

Of Piglets

2008-05-06T09:30:00.005-04:00

As some of you know, my office-mate Pam inadvertently adopted a piglet (Maya) last week, and Pam had her in the office most of the week, bottle-feeding her, keeping her warm, bathing her, encouraging her to use the computer. A very charming little pig.

Unfortunately, Maya was the runt of the litter, rejected by her mom, and her health took a turn over the weekend. She died on Saturday. We'll miss her.

Last Long Run Sunday....

2008-05-03T18:18:00.008-04:00

Tomorrow is my last pre-marathon long run--a twenty-miler. To try to avoid too much misery, I've mapped out a relatively level route this time:

http://www.usatf.org/routes/view.asp?rID=211174

Total elevation gain = 939 feet
Elevation change--ups plus downs = 1880 feet

The last time I ran 20 miles (closer to my house):

Total levation gain = 2580 feet
Elevation change = 5157 feet

On the other hand, the weather will be doing its best to promote a different kind of misery:

Sunday: Rain, mainly before 2pm. Patchy fog before 2pm. High near 53. South wind around 7 mph. Chance of precipitation is 90%. New rainfall amounts between a quarter and half of an inch possible.

UPDATE: It's still not easy to run 20 miles (and I definitely won't be breaking any personal records with this marathon), but this run went much better than the last 20-miler. Almost no walking. Almost no "IT Band" pain.

Today's Mt. Rainier High-Camp Weather

2008-04-29T18:43:00.004-04:00

WINDY

Weather readings from Camp Muir, roughly 4,300 feet below the summit (our high camp will be at Camp Schurman, but the elevations are equivalent):


        4-29-2008
          Northwest Weather and Avalanche Center
          Camp Muir, Mt Rainier National Park, Washington
          Data also courtesy Mt Rainier National Park
          
          Wind sensors unheated and may rime
          Wind direction likely out

            MM/DD   Hour   Temp     RH   Wind   Wind   Wind   Wind
                     PST      F      %    Min    Avg    Max    Dir
                         10100' 10100' 10100' 10100' 10100' 10100'
          --------------------------------------------------------
             4 28   1500     19     96     29     42     56    353
             4 28   1600     20     97     27     33     48    353
             4 28   1700     17     96     25     40     50    353
             4 28   1800     17     95     26     35     41    353
             4 28   1900     18     96     22     27     33    353
             4 28   2000     17     95     25     29     33    353
             4 28   2100     15     95     24     31     37    353
             4 28   2200     15     95     24     31     42    353
             4 28   2300     14     95     23     33     42    353
             4 29      0     12     93     26     39     50    353
             4 29    100      9     92     29     38     47    353
             4 29    200      6     92     16     26     38    353
             4 29    300      7     91     16     24     32    353
             4 29    400      7     91     10     19     28    353
             4 29    500      6     91     13     22     32    353
             4 29    600      7     91     15     21     33    353
             4 29    700      8     91     13     22     30    353
             4 29    800      9     91      8     18     28    353
             4 29    900     10     91     11     17     25    353
             4 29   1000     11     91     10     19     26    353
             4 29   1100     13     91     10     15     20    353
             4 29   1200     13     91      7     15     25    353
             4 29   1300     14     92      8     14     21    353
             4 29   1400     14     92      1     10     16    353

Musical/Political Interlude

2008-04-26T09:47:00.004-04:00

Enough with the tribulations of getting in shape, and of climbing mountains, and fighting cancer, at least for awhile. I need a break.

In some ways this is nostalgic, because Billy Bragg is so 1988, but hey.

This song, "Waiting for the Great Leap Forwards," has been updated all along by Mr. Bragg when he plays it live--updated to fit the current social or political climate or simply to add a joke or twist the lyrics around playfully. He's a good guy, and 20 years later, this song, like any good folk song, still has some relevance. Performed here at SXSW in Austin, TX, March 2008. Original lyrics below.

Billy Bragg plays at the Moore Theater in Seattle on June 6 and Club Soda in Montreal on June 18.

Waiting for the Great Leap Forwards (1988)

It may have been Camelot for Jack and Jacqueline
But on the Che Guevara highway filling up with gasoline
Fidel Castro's brother spies a rich lady who's crying
Over luxury's disappointment
So he walks over and he's trying
To sympathise with her but he thinks that he should warn her
That the Third World is just around the corner

In the Soviet Union a scientist is blinded
By the resumption of nuclear testing and he is reminded
That Dr Robert Oppenheimer's optimism fell
At the first hurdle

In the Cheese Pavilion and the only noise I hear
Is the sound of someone stacking chairs
And mopping up spilt beer
And someone asking questions and basking in the light
Of the fifteen fame filled minutes of the fanzine writer

Mixing Pop and Politics he asks me what the use is
I offer him embarrassment and my usual excuses
While looking down the corridor
Out to where the van is waiting
I'm looking for the Great Leap Forwards

Jumble sales are organised and pamphlets have been posted
Even after closing time there's still parties to be hosted
You can be active with the activists
Or sleep in with the sleepers
While you're waiting for the Great Leap Forwards

One leap forward, two leaps back
Will politics get me the sack?

Here comes the future and you can't run from it
If you've got a blacklist I want to be on it

It's a mighty long way down rock 'n roll
From Top of the Pops to drawing the dole

If no one seems to understand
Start your own revolution and cut out the middleman

In a perfect world we'd all sing in tune
But this is reality so give me some room

So join the struggle while you may
The Revolution is just a T-shirt away
Waiting for the Great Leap Forwards

Long Run Sunday: Twenty Miles of Running on Empty

2008-04-20T14:35:00.008-04:00

Flickr image by phil.thuma

Today--after 13 weeks of ramping-up--was the first of two 20-mile training runs I'm scheduled to do between now and the Vermont City Marathon at the end of May.

Urp.

It was not easy. Of course.

But really, it was not easy. Especially when it came to the rolling hills that are pretty inescapable around here.

The hills became harder and harder as I went on, until even the puniest of hills (hillocks? hillettes? gentle inclines?) were basically impossible to run. At any rate, my brain could not convince my legs to get up off their asses and trot.

You have to admit, though, some of these hills are pretty mountainous (actual cross-section of my route):

The whole thing took four hours. Which pretty much means I need to scale back my expectations of this marathon. As in: maybe I should just be glad to finish?

Two Trials

2008-04-18T08:41:00.003-04:00

We're wishing Maine's Emily LeVan the best of luck at Sunday's Olympic marathon trials in Boston.

More importantly, congratulations are in order for her daughter Maddie--who is in treatment for leukemia--for finishing "Delayed Intensification". Even though she has a good distance to go, "D.I." is kind of like Heartbreak Hill; all that's left is the long, arduous "coast" to the finish.

(Two Trials)

(Gone to the Squirrels)

2008-04-10T20:38:00.003-04:00

This is definitely off-topic.

However: to give some context for what will follow, I've long been a (relatively) confident father--confident that I have spent significant time with my children, and that they love and respect me, and that (in all but a few respects) my kids know me as a true sharer of their care.

But maybe this was hubris all along, because I suddenly feel unable to control (manage, steer, cajole, bribe) these people, and my days are careening between relative calm and throw-up-your-hands powerlessness.

They've got me outnumbered.

Lauren is away for a few days, which means a lot of quality time with my kids.

Okay, so far it means all of my waking hours have been with the kids (and most of the sleeping ones too, since I inadvertently spent last night--fully dressed, like some passed-out college student--in a Norah's little bunk bed, after cuddling her to sleep).

(Come to think of it, I might have fallen asleep before she did.)

This period finds Norah being particularly willful, and I fear I've lost all control--of her, of him, of the whole daily shebang. To whit:

-Yesterday while making dinner I came outside to find that the kids had punctured a can of orange paint, and that Norah had smeared it all over her forearms and hands, and that Fergus was very carefully turning the driveway into an homage to Jackson Pollack.

-After foolishly helping Norah onto the roof of our woodshed this morning (did she charm me into it? What was I thinking?), she climbed onto the peak of the adjoining garage (20 feet high?) and taunted me, refusing to come down.

-At the end of gymnastics class this morning I had to literally dive into the bottomless pit of foam to drag my kids out. The dive was fun. The dragging out: not so much.

-After taking them for maple creamies this afternoon, I chastised Norah for squishing her nice shoes over and over into the deep mud in the parking area, and in response she climbed in the car, threw gravel at my head, and got mud all over the back of my seat.

-Tonight while I made dinner, Norah scavenged in the cupboards while I wasn't paying attention and scattered trails of Grape Nuts and peanuts (in the shell) from the front porch, into the living room, and down the hall to her bedroom. How she did this without my noticing I have no idea. I mean, it's not like I was making anything exotic for dinner. We're talking turkey burgers with macaroni and cheese. When I asked her what she was up to, she said she was luring squirrels into the house.

"What are you going to do with these squirrels?" I asked, as she counted a long row of peanuts on the living room floor.

"Put them in my room," she said, matter-of-factly.

"To do what?" I asked.

"Help me make it pretty," she said, as if it was all but obvious. She got to the end of the row. "I'm hoping to get forty-eight in the house."

"One for every peanut?"

"Yes," she said.

"Forty-seven," said Fergus, cracking open a peanut at the other end of the row.

She then set to work naming all of the squirrels, and writing their names down in careful/jubilant 5-year-old handwriting. Fourteen was as far as she got tonight:

1. Nuttkin
2. Knockout
3. Squeaksqueak
4. Goforit
5. Mutts
6. Beat
7. Seashell
8. Daffodil
9. Sailboat
10. Crab
11. Fishwish
12. Island
13. Sea
14. Castles

Presumably she'll be naming the rest of them tomorrow. And, you know, I'll be doing a lot of careful breathing exercises.

Coming Your Way, June 22

2008-04-09T20:08:00.004-04:00

Dex-Pulse Anniversaries (Long Post)

2008-04-06T14:16:00.011-04:00

Last night I was looking at some photos from a year ago, curious to see how much snow we had last April compared to this year. And I realized that yesterday was the one-year anniversary of Fergus' last dose (ever?) of the steroid dexamethasone. Twelve weeks later, he was officially "Off Treatment". There were few things Lauren and I hated worse than the steroid "pulses" that were part of his treatment protocol. I mean, certainly some of the other chemicals we put into Fergus were more scary, and may have had more lasting effects. But the steroids were odious, and brought chaos and emotional upheaval into our lives. Here is his last dose of dexamethasone, April 5, 2007:

I never really captured the full awfulness of those dex pulses, which lasted as long as three weeks, during which time we were kept very busy managing his intense food cravings, and borderline craziness (some kids literally exhibit psychotic symptoms during long steroid pulses). In his last year of treatment Fergus had a one-week pulse of dexamethasone every 12 weeks. I tried to document one of these weeks, back in April of 2006, and I've included extended excerpts here. But we were "saved" from some of the more intense steroid effects that week, since Gus had some other things going on (intense, post-spinal headaches). But these notes still capture something of what life can be like with leukemia in the house--even at 18 months into treatment, when things had become relatively routine.

Dex Week: Introduction (4/2006)

In the current stage of Fergus' treatment ("Intensive Continuation", research protocol "POG 9905"), every twelve weeks he gets IV vincristine (a chemo drug), goes under anesthesia, gets methotrexate injected into his spinal column, spinal fluids are drawn to look for abnormal cells, and he starts a week of the steroid dexamethasone. You'd think the worst part for us would be the anesthesia, or the spinal tap. But it's the dex that we dread.

The affects of dex are a little different each time, but for Gus they can include:

Red cheeks.
"Moon face".
Distended belly.
Emotional volatility.
Higher pitch to his voice.
Insatiable appetite, and very specific cravings.
Night time teeth grinding (intense enough that we can hear it in the next room).
Thinking that is rather obsessive, a little strange.
Hair that feels dirty all the time, even right after a bath.
Afternoon exaustion.
Night time waking.
Early rising.
With extended dex treatment he can develop an unpleasant, "chemical" smell.
His drawings become more herky-jerky, and filled with elaborate (but hard to discern) detail.

Symptoms start slowly, subtly at first, but can become pretty severe by the end of the week (we used to have longer periods of dex, which were awful). We've also realized over the last few dex rounds that there is a period of several days after the dex ends that are also very hard for Gus, when he is moody, tired, and sad.

This week Fergus had his spinal on Wednesday afternoon, and we started the dex that evening with dinner. He gets 3 mg, twice a day.

Here is what 3 weeks of dex can do to our boy (March 2005):

(cringe)

Dex Week: Day 1 (4/2006)

The emotional affects of the dex seem to be hitting quickly this time. Lauren says he was all over the map today: manic, weepy, furious. While driving to Burlington today, some minor slight led to Fergus hitting Norah in the face, twice, hard, while she was trapped in her car seat. Also, when he was mad at Lauren for something, he hit a storm window with a long pole, breaking it (I'm not sure he realized it would break).

This week could be a doozy.
Dex Week: Day 2 (4/2006)

His cheeks have gotten red, in the dexamethasone way, and a little puffy. His moods were a little volatile today, but they mostly corresponded to a headache that came and went during the day, even after some Tylenol (Ped-Onc said it was okay to give). He also reported a stomach ache for awhile (which he blamed me for, since I was pushing fluids to ease his headache).

Is the headache a chemo side effect or is it a side effect of the spinal? I don't think he's ever had a post-spinal headache before.
Dex Week: Day 3 (4/2006)

As the kids watch a video this morning, I hear keening coming from the den: Fergus' headache is back. A half hour passes and it seems to be gone again. In another half hour, it's back again, and he's lying sideways on the couch, close to tears.

While we had assumed that any post-spinal (or "Lumbar Puncture") headache would occur more or less right after the procedure, I found some info at Columbia University that indicates it can take a few days before onset:

"The onset of PLPH (Post Lumbar Puncture Headache) is usually within 24 to 48 hours after dural puncture but may be delayed as long as 12 days. Symptoms are usually self-limited. With conservative management 50 percent of headaches resolve spontaneously within four days, 75 percent within seven days, and 95 percent within six weeks. The longest reported PLPH lasted 19 months. Early onset of headache after LP correlates with a worse prognosis."

As I write this, Gus is working on LEGOs, but in pain again, saying "Who can help me?" I'll get him some Tylenol, but it didn't help much yesterday...how do I explain that he's mostly just going to have to wait it out?

He keens again and says, "I can't calm down, Daddy. All the pain that is building up inside is making me make those sounds." It's hard to know how much his reaction is amplified by the dex.

I push him to drink more water and right away he says, "It's not helping, Daddy!" And yet, ten minutes later, he's lying on the couch, giggling at a muppet video. Lying down like this may feel better to him, as bed rest is one of the recommended steps for ameliorating symptoms, the horizontal position reducing the "persistent leakage of cerebrospinal fluid (CSF) from the puncture site."
Urgh.
Dex Week: Day 3 (Addendum) (4/2006)

Glimmers of food cravings to come? Yesterday he had two apples at lunch time, which is unusual for him, and tonight had seconds of applesauce with dinner, in addition to a small cup of yogurt with dexamethasone and Zantac ground up in it, which he called his second dessert. Usually the cravings run more to spagetti and meatballs.

But more telling for me was that he finished a large dinner (and the above desserts), sat back and moaned (not with delight but something more like anguish) that he couldn't eat any more... then, not five minutes later, when Norah began eating a small half-cup of icecream for dessert, he declared that he was "starving" and had to have what Norah was having.

We had to re-configure our bedtime medication ritual--nightly Mercaptopurine, or "6MP", on an empty stomach--and negotiate with him so he could have a small cup of icecream.

He was asleep an hour later, before Norah even made it into bed. He nearly fell asleep as I read to him ""The Book About Moomin, Mymble, and Little My."

We'll have to wake him for the 6MP (and hope that his dex-brain doesn't spring to life when we do).
Dex Week: Day 4 (4/2006)

A tiring day that saw Fergus' headaches becoming less frequent (I actually spelled that word "freakwent" the first time, which probably means something), Norah complaining a lot about her own phantom illnesses and then getting the last laugh by throwing up at the grocery store deli counter.

And here I thought she just wanted attention.

It also saw Fergus alternating between sweetness and senseless fury, and on two different occassions screaming over and over, "I wish I'd never been born!" Well, buddy, we're glad you were, so enough already.

No food cravings to speak of. Still a fair amount of high-pitched keening when his head hurt.

Three days of Dex to go.
Dex Week: Day 5 (4/2006)

I'm at work today. Here are a couple of status reports from Lauren:

Morning, via online chat:

9:10 AM me: How's everyone?
9:11 AM Lauren: ok; no headaches yet; some volatilty..."Nobody loves me; I wish I'd never been born"...both were up at 6:15, so will be tired later. He's mad at me for not being able to show him the video you made last night.

Afternoon, via phone:

At 3PM Lauren called me from the car with an update. Both kids were mad at her because a thrift store she promised to take them to happens to be closed on Mondays. As she told me about this, in the background, Fergus announced:

I have five rules for you, Lauren:
I have no toys.
I’m never going back to that store.
We will lose our house.
The roads will be destroyed.
All the houses will be blown up.

My six-year-old nihilist.
Dex Week: Day 6 (4/2006)

I was home with the kids today (a usual thing on Tuesdays), and things went relatively smoothly. Fergus was somewhat emotional, but also quite sweet at times.

No headaches (and Lauren says he had none yesterday either). He spent a good amount of time working on drawings, with recurrent themes based on LEGO robots or a bad guy from a Muppet movie called Doc Hopper (I think he has a chain of restaurants specializing in fried frog legs, much to Kermit's chagrin).

The dex may be wearing him out a bit...this afternoon while the three of us played outside, he eventually said he was tired, and went inside to watch a video. Maybe the exaustion of the dex is muting the volatility. While there were glimmers of the dex kid who can't get enough of a certain food, I still wouldn't say he was dex-obsessing about particular foods, and it is still possible to dissuade him from endless "refills" of fries, or whatever, especially once the food in question is gone (whereas when he's full-blow dex-boy you can tell him that there is no more spagetti and meatballs and it won't matter...it will come up again and again until you relent and make another batch of noodles and sauce).

He created a delightful 10 or 12 page booklet today called "The Book of Scary Stuff," with pictures and text. Sample scary stuff includes: "Walking bushes are the most frightening thing in the world," "a giant turkey that is mad with a dinosaur tail," "killer crocs they live in swamps they kill," and (speaking of Doc Hopper) "Doc Hooper (sic) rips off the legs of frogs to make french fried frog legs." Ooooh, gives me the willies just to think about it.

Yesterday, which was perhaps an angrier day, Gus wrote this letter (to his twin friends) on a computer at Lauren's clinic:

"To luke this is an
Emergency note for you
& libby a laser
cannon just fired
lasers at the space
station do something
quickly before they
burn down the town.
Signed fergus"

Tomorrow: the last day of Dex.

Oh, and we made it to the thrift store today, despite yesterday's dire warnings from Fergus. He was delighted to come home with three dollars worth of plastic breakfast food. Norah came home with some groovy purple pants.
Dex Week: Day 7 (4/2006)

Gus was up early (5:30AM), which is fairly typical of Dex: fitful sleep, buzzing brain, late afternoon exaustion. When I left for work at 6:15, he was sitting with Ocho (one of the cats), watching a video. No big deal. His last dose of dex was just 2 hours away.

After work, at about 7:15PM, I met Gus and his Mom and sister at a local pizza place, where they had met up with our friend Sarah and her daughter (who is Gus' age).

He was a different kid.

He even looked different: his face was suddenly round, his cheeks bright red. This is the face that all kids on steroids eventually get, such that there can be more of a family resemblance between dex kids than there is between the kids and their parents. It's unnerving.

When I got to the table, he was sprawled on the bench. "Hello down there, Daddy," he said. Minutes later, as I ate the one leftover piece of pizza, his obvious exaustion was replaced by (or overridden by) manic energy. Luckily the restaurant was nearly empty, because soon he was prancing around between the tables, calling out, "Let the show begin!" or, "Now ladies and gentlemen, it's time for the Two Girls Rock and Roll Show!" or "It's time for the 'Brother and Sister Smack Show!" Thankfully, this last show was not about hitting each other, but about slapping your own thighs to make drum sounds and then dancing along to the beat (Sarah was the only one willing to do this with Gus in the middle of the restaurant...Lauren probably would have done it, but she was away from the table at the time).

But in spite of his excited emcee performance, Gus was also very quick to get upset if we didn't all do as he directed us to do, or if Sarah took a picture with him in it (she was trying to get a good picture for a newspaper story about Lauren's triathlon training).

Lauren said that before I got to the restaurant, there was a moment when Sarah's daughter wanted to use a certain green crayon to draw with, and Gus could not stand it, and wailed, and then yelled at the top of his lungs (in the restaurant, mind you) the familiar refrain from this week, "I wish I was never born!"

We got out of there fairly quickly, before things got too ugly. Outside, along the railroad tracks, he directed us in elaborate, manically-contrived stories that we had to act out, and if we strayed from whatever script he had in his head he screamed. E.g. he announced we should all sing railroad songs, and when Sarah's daughter obliged, he kept yelling, "Stop! Stop! Stop!" and it later turned out that he wanted us to sing "I've been working on the railroad" and nothing else. Then there were awful tears when we started talking about going home, and when Sarah and Co. actually did go home, he was furious, and stormed off down the railroad tracks.

I mean--wow.

So let's all cheer for this picture: no more dex:

Long Run Sunday Pain Report Redux

2008-04-06T13:50:00.007-04:00

Aside from getting ready for the Mt. Rainier climb, I'm also trying to get ready for the Vermont City Marathon at the end of May. This means that Sundays are usually set aside for long runs, like today's 18-miler. It was a lovely morning for a run, and below-freezing overnight so the dirt roads were not too sloppy. And suddenly the air is full of birdsong we haven't heard in six months, the angry chirrups of hungry robins, and the creaky-screen-door sound of red wing blackbirds--birds that winter south of here. Sure signs of spring (even if I can still climb onto the roof from the snow piles next to the house). It was great to be able to run on the roads again, after months of icy conditions, and I should have been a happy little running-sprite, relaxed and taking my time, joyous at the change of seasons.

But man, what a lousy run.

Every little hill set me to walking, and by mile 16 or 17 I was pretty much spent. Leaden, dizzy, hungry, and unable to will myself to run any more. By the time I got home (3 hrs and 43 minutes after I started), Lauren and the kids were literally heading off in the car to look for me. Am I too focused on Rainier to give running its due?

Special Thanks...

2008-04-05T11:00:00.005-04:00

...to all of Bob and Michele's friends who have donated and/or sent us good vibes over the past few weeks:

Michael and Mary
Paul and Nancy
Shannon
Mike
Darlene
Lisa
Kelly
Karen
Laura
Adam
Jen D.
And probably some others!

You guys...rock. And, you know, you're really nice.

Like I Said, It's Sugar Time in Vermont

2008-04-01T17:00:00.004-04:00

...And when we're minding the sap run at our house, some of us (Fergus) dress in snow pants, gloves, and winter coats. Some of us (me, myself, I) dress in Carharts and a long-sleeve T-shirt from the carcinogenic T-shirt factory (that's an inside joke).

Some of us, however, celebrate spring (and 45 degree temperatures) in style: apparently maple sugar time is also tutu time on the Center Road, if you're Norah.

Over the snowfields, in the woods, down the road, fog was rising from the snow, and as Norah scampered down the muddy road to get to a few more sap buckets, I told her to be careful, because a little girl in a tutu blends in with the fog, and the cars and trucks might not see her right away. A few minutes later she asked for help getting down from a snow bank. "I'm like the fog," she said, by way of explanation. Indeed.

Our Story: Take One

2008-03-30T09:28:00.006-04:00

Fergus is doing great these days.

The story of Fergus' diagnosis, treatment, and its reverberations through our life can be told a hundred different ways. Leukemia is so large, elephantine, that it's impossible to capture the whole thing from one angle. You have to come at it again and again from different angles, so you end up with something less like a narrative and more like a mosaic or pastiche, or like a cubist portrait.

When you put all the pieces together you get something that approaches our story, but still doesn't fully convey its essence. And even though some of our friends and family probably mumble under their breath, "Enough with the leukemia talk already," we're still trying to figure out what hit us on November 29, 2004 (Diagnosis Day), and how it has changed/is changing/will change our lives.

So here's one part of the mosaic, this time not even written by me or Lauren. It's a story published in our local paper last fall, written by one of its editors, Susan Allen (and thanks, Sue, for letting us re-post the text here). I'll try to come at this from different angles in the future, but this is a fine start:

Article published Sep 17, 2007
Leukemia hasn't daunted 7-year-old Fergus Ryan

By Susan Allen, Barre-Montpelier Times Argus editor

EAST MONTPELIER – Seven-year-old Fergus Ryan has pulled off the greatest magic trick of his young life.

After being diagnosed with acute lymphoblastic leukemia in December 2004, and spending more than two years undergoing chemotherapy, endless trips to Fletcher Allen Health Care, 18 spinal taps and 3,656 pills of one kind or another – he smiles, jokes and looks like any boy next door.

It's magical.

"Want to see a magic trick?" he asked last week, racing through the dining room of his family's East Montpelier home, hunting for a white gift wrap bow that's part of his act. The curly bow "magically" turns into a tight tied bow while the viewer's eyes are closed.

"Where'd you learn that trick?" he is asked.

"From Marko," he replies, referring to central Vermont's Marko the Magician who performed at Fergus' party to celebrate his last chemotherapy treatment on June 27, 2007. One of his anesthesiologists was also a magician, his mother Lauren notes.

Lauren Quinn, a veterinarian at Onion River Animal Hospital in Montpelier, recalls the ordeal of discovering that her son was facing a fight for his life.

The first signs appeared in October 2004, while attending a wedding outside Vermont when he experienced a fever and stomach pain. The third day, when the symptoms continued, she and husband Rob took Fergus to a pediatrician, who conducted blood tests and found everything normal except some anemia.

Back home in Vermont, Fergus continued to bounce from healthy and happy to complaining about pain and spiking an occasional fever. One day he began crawling because of pain in one leg; he toured the Montshire Museum that day in a stroller and experienced significant pain on the ride home.

Tests showed his white blood cell count normal, but Fergus' doctor advised Lauren to take the boy to a hematogolist (blood specialist) at Fletcher Allen Health Care about the anemia.

"I had a weird feeling about this," she recalled of that visit on Nov. 29, 2004.

The hematologist ran tests, then left the room to review X-rays and blood slides. He took a long time returning, and Lauren and Rob "assumed he was really busy being with sick kids."

"He came back and we knew right away … he said I really hate to tell you this …" The diagnosis was leukemia, Lauren said. "I remember feeling kind of cold. I just felt icy."

Lauren didn't cry for four days. Instead, she shifted into action, calling a doctor at Dana Farber Cancer Center in Boston to talk about treatment options and going online to research the disease. That night she cuddled Fergus, thinking about how his life would change the following day when he was admitted for chemotherapy and officially became a "sick child."

"I thought, 'He's so healthy and normal. What if I just put him in the car and drive away?'" she recalled.

Fergus was diagnosed on Nov. 29, admitted for his first hospital stay on Nov. 30, and started chemotherapy on Dec. 1. That's been his life off and on until June 27 of this year, when he received his last treatment.

"The first time I cried was four days into it," Lauren said. The boy was anxious about the spinal taps and blood draws; he cried but held still throughout his medical ordeals. At the end of the one session, when he was allowed to choose a "prize" for himself, he instead picked a little pink doll to give to his 18-month-old sister Norah.

Lauren Quinn finally broke down.

The couple spent the next 2-1/2 years alternating work schedules, child care, and trips to the hospital (where they brought a lamp and quilts from his room at home to make him more comfortable during his stays). Friends brought meals to the family three nights a week.

Fergus remained healthy looking, but steroids that were part of the treatment wreaked havoc on his emotions. He'd laugh hysterically, then sob. He had food cravings – many kids in this situation crave salty junk food such as chips, but Fergus craved spaghetti and meatballs. His hair thinned and the curls grew coarser, but he didn't go bald, Lauren said.

The treatments were an ordeal.

"Fergus did get a port placed under his skin for all of his chemo," Lauren explained in an e-mail. "It was a central line down toward his heart. To access it, the skin was numbed and a needle was pushed through the skin into this little rubber diaphragm. Fergus dreaded port accesses for most of treatment, and needed a lot of help holding still. By the end he was a pro, and could sit nervously while the needle went in. He claimed he always felt it."

The couple found the experience "a huge challenge," but learned to communicate better and deal with the stress.

"We had to be more tender because we each grieved differently," Lauren said.

Every Sunday, she said, after Fergus had returned from a hospital stay, they'd put on fun music and the whole family would dance for half an hour just to reconnect and burn off the tension.

The family's health insurance covered most of the expenses, which Lauren said was a relief because many families have to fret about the bills during a child's illness, adding to their burden.

Lauren's brother who lives in Seattle wanted to help in some way, and began running in triathlons to raise money for the fight against childhood cancer. Lauren was inspired and she, too, began training for the 2006 Team in Training triathlon (visit www.teamintraining.org for information) in Memphis – and raised $21,000 toward the effort.

Lauren and Fergus took another important step forward in the fight against childhood cancer by traveling to Washington, D.C., in June to attend a national rally for federal funding for the fight against childhood cancer and passage of the Conquer Childhood Cancer Act. Families came from across the country to tell their personal stories of cancer; they asked to meet with their congressional members of staffers.

Lauren and Fergus were the only two from Vermont – and they met personally with Rep. Peter Welch (whose wife died of cancer) and Sen. Bernie Sanders, who signed onto the cancer bill that very day. They also met with a Leahy staffer. Lauren learned last week that Welch and Leahy, too, signed onto the legislation.

Lauren said that in 1967, only 5 percent of children with leukemia survived; now 85 percent can survive. But that figure has leveled off and families are hoping to move research and survival rates forward.

Today Fergus is in long-term remission and doing well. Lauren and Rob worry about a relapse, and confess to occasionally stressing every time the boy – or even his sister – complains of leg pain.

"Every now and then something will happen and I'll get that feeling of being punched in the stomach," she said.

While the experience has been an ordeal, Lauren said there has been a positive side to Fergus' fight.

"It's enhanced our enjoyment of each other and our appreciation of the small daily pleasures," she said. "We will have these moments, the kids are laughing, and Rob and I find each other looking at each other and thinking, 'This is a great moment.'"

Recently she was sitting in the yard looking at the view and imagined Fergus walking up, home from college or his life away, and having a beer and sharing the view.

"I burst into tears because I so desperately want that to happen," she said. But, she reminded herself, "Nobody has that guarantee." Even for cancer-free families, life is a gamble.

"It's been an incredibly hard two years, but on the other hand it's been a delightfully wonderful life with our children for two-and-a-half years," Lauren said. "We've had a good time and we've really enjoyed each other, and we still do. We're more focused on the present."

Lauren said that recently Fergus was watching a video on cancer and looked away as the announcer talked about those who have died of the disease.

"Will I be a survivor?" he asked his mother.

She replied, "You already are."

Tomorrow: Training Climb Two

2008-03-29T11:39:00.007-04:00

Tomorrow afternoon, JohntheClimbinggMentor and I are meeting at Vermont's Smuggler's Notch (basically a pass on the shoulder of Mount Mansfield) to do some more training: crampons, ice axes, and ropes. We're approaching from opposite sides of the Notch, climbing up the closed-in-winter part of the road (highlighted in yellow).

...If I'm going to stay on track with my training for the May 25th Vermont City Marathon, I also have to run 17 miles tomorrow.

Somehow.

Glissading down a snowfield with an ice axe in my hand sounds like more fun.

For the Record, It's Sugar Time in Vermont

2008-03-28T20:32:00.006-04:00

Photo appropriated from JDS at False 45th.

I (Still) Keep Seeing This Shape

2008-03-27T21:20:00.004-04:00

Have I mentioned that we've had a lot of snow this winter in Vermont? Two and a half weeks ago I alluded to a haunting sense of Rainier-ish familiarity I was getting from all these piles of snow. The feeling hasn't gone away.

Even though this looks fake, this is my view out the back door these days. I swear Mount Rainier is stalking me.

Meet the Team: Dancing Bob

2008-03-25T15:41:00.008-04:00

Currently there are three members of our climbing team: Rob, Bob, and John. Here's a brief intro to the guy my kids call Dancing Bob.

I've known Bob for years and years, and a close look at our past accomplishments will tell you something about how prepared to climb Mt. Rainier we are:

-We worked as a team in the late 1980's to create the wondrous Sputnik-like party treat known far and wide as "Cantelope-and-Carrots."
-Celebrated Bob's 30th birthday by flinging ourselves into a Canadian abyss with nothing but a stretchy cord wrapped around our ankles.
-Worked as part of a small team in the mid 1990's to curate what was then known as the Thursday Evening Drinking Club at Seattle's Virginia Inn. Wrote A.E. Housman poems on the bathroom wall (c.f. "Terrence this is Stupid Stuff").
-Successfully summited Vermont's Bald Hill (vertical rise approximately 200 feet), Summer 2003, despite occasional clouds of black flies, exposed roots and stones on the climbing route, small children in tow, and fierce summit winds of 5 to 10 MPH.

Known for his joviality (except when he's hungry) and perseverance, when Bob was shown an image of the Mt. Rainier climbing route, he said:

"HOLY F%&*, IT’S STRAIGHT G*& D^%$ UP!"

When confronted with the list of possible things to pack for the climb, this paragon of fortitude responded:

"There it is - the poop bags - my biggest concern, having to take a dump at 14,000 feet."

I mean, never mind the fierce and unpredictable weather, or the hidden crevasses, or the altitude sickness, or the fact that people, you know, occasionally die on Mount Rainier (sorry Michele and Lauren). Bob has other worries.

"…it’s just that you get up before dawn, start hiking up this huge ice cube, then it’s six-ish and well, time to go. . . ."

Recently, about training for the climb, he was more succinct:

"My legs hurt."

All in all, he'll be a reliable counterweight comrade to have on the line when I fall into that bottomless crevasse. Thanks for doing this Bob!

I've Been Seeing This Shape...

2008-03-11T22:38:00.007-04:00

Lately I feel like the Richard Dreyfuss character in "Close Encounters of the Third Kind":

"I know this sounds crazy, but ever since yesterday on the road, I've been seeing this shape. Shaving cream, pillows...Dammit! I know this. I know what this is! This means something. This is important."

Except this is the shape I keep seeing:

In the Right Light You Look Like Shackleton

2008-03-09T14:40:00.009-04:00

Doctors played your dosage like a card-trick.
Scrabbled down the hallways yelling "Yahtzee!"

One of the small pleasures about Vermont in the wintertime, if you're trying to get in shape, is the long hours spent running on a treadmill. Sure, it's tedious. But it's also at least sort of meditative and, for me, provides an opportunity to drown out the awful Quiet Riot and Guns n' Roses that they play at the gym with an iPod and some newfound music of my own.

Sometimes this means elaborate, embarrassing, time-consuming Rock and Roll Fantasies—the highschool talent show revenge fantasy, the peculiar dream of busking on a Montpelier street corner with my accordion and a handful of Billy Bragg songs. But also it means I have a chance to give a close listen to new musical discoveries and/or music that my kids would never abide on the stereo at home. One of these new pleasures, for me, is a Canadian band called The Weakerthans.

And, okay, they're somewhat derivative, musically, but they're also word-heavy, and playful and literate, which can distract from the hamster-wheel effect of treadmill running (and from the aforementioned embarrassing fantasy scenarios). There's the song inspired by a Martin Amis novel, the song that imagines a 20^th century explorer dining with Michel Foucault ("I must say that in the right light you look like Shackleton"), and the plea from a cat to its owner:

Why don't you ever want to play? I'm tired of this piece of string.
You sleep as much as I do now, and you don't eat much of anything.
I don't know who you're talking to—I made a search through every room,
But all I found was dust that moved in shadows of the afternoon.
And listen, about those bitter songs you sing?
They're not helping anything;
They won't make you strong.

A wise cat, but even so, a bitter song can sometimes resonate a bit. And an (uncharacteristically) somber song called "(Hospital Vespers)" gets me thinking of the early days of Fergus' diagnosis, of the fear and helplessness of watching your little boy lie there in the hospital bed while you wait for the orderly to take him down for a bone marrow tap, or an infusion of toxic chemicals into his spine.

Doctors played your dosage like a card-trick.
Scrabbled down the hallways yelling "Yahtzee!"
I brought books on Hopper and the Arctic,
Something called "The Politics of Lonely,"
A toothbrush and a quick-pick with the plus.
You tried not to roll your sunken eyes, and
Said, "Hey can you help me, I can't reach it."
Pointed at the camera in the ceiling.
I climbed up, blocked it so they couldn't see.
Turned to find you out of bed, and kneeling.
Before the nurses came, took you away,
I stood there on a chair and watched you pray

Personal convictions aside, I'm not, as they say, a Prayin' Man. But strange situations can take you in strange directions. I've been thinking a lot lately about how parenthood, and uprooting, and homeschooling, and my child's leukemia have changed my life, and it seems busier and more fractured than ever. In fact, just this morning, Lauren said she felt like we have a dozen things all hanging by the barest of threads right now. She and I seem to talk most thoroughly by email, and the only time I have for inwardness are the times stolen away from my family—an hour at the gym, or an afternoon (so rare) climbing a mountain.

Last week Lauren sent me an article about a husband and wife who both initiated affairs while their young daughter struggled with a mysterious set of symptoms. Lauren wasn't trying to "tell me something" ominous with that article, but it resonated for us both nonetheless:

I think the hardest part of having a child with special issues is the need for comfort. Julie and I could do anything, face any tough issue that came up, if only we could escape that world every now and then. Perhaps we all need to have someone on the outside to make that escape with, someone who's not there with us.

To complicate our feeling of helplessness, we had no definitive answer to face, no medical diagnosis stating "This is what's wrong with your child, and here's what you need to accomplish in order to fix it." There were only unanswered questions and frustrations, and when we looked at each other, I guess what we saw was someone who didn't feel one bit of sympathy for the other. I'm in the same boat, we seemed to say. Don't look to me for any answers.

This feeling of giving nearly all that you have to give in order to keep your kid alive, to vouchsafe his journey back to health--this is the part that resonates. But if we can't turn to the closest of others for answers, for support and nourishment, what is the safe direction to turn? Outward or inward? And if it's inward, how do we carve out the quiet moment to delve into that inwardness?

These thoughts were with me this week when I encountered a radio interview between host Krista Tippett and Irish poet John O'Donohue on a show called "Speaking of Faith." And again, I find myself making connections—possibly spurious ones, I know—between what he says here and the pop songs and the articles, the themes that keep washing into my waking life. An excerpt:

John O'Donohue: You see, I think that one of the huge difficulties in modern life is the way time has become the enemy.

Krista Tippett: Time is a bully; we are captive to it.

JO: Totally. Seven out of every ten people who turn up in a doctor's surgery are suffering from something stress related. Now, there are big psychological tomes written on stress. But for me, philosophically, stress is a perverted relationship to time. So that rather than being a subject of your own time, you have become its target, and victim. And time has become routine. So that at the end of the day you probably haven't had a true moment for yourself, you know, to relax in, and just be. Because you know the way in this country there are all the different zones—I think there are these zones within us as well. There's surface time, which is really rapid-fire Ferrari time--

KT: --And over structured.

JO: Yeah, over structured-like, and stolen from you, thieved all the time. And then if you slip down…like Dan Siegel, my friend, has this lovely meditation, you know, you imagine the surface of the ocean is all restless, and then you slip down, deep below the surface, where it's still, and where things move slow. And what I love in this regard is my old friend, Meister Eckhart, the 14^th century mystic--

KT: --Right. German mystic.

JO: German mystic. And one day I read in him, and he said, "There is a place in the soul—there's a place in the soul that neither time nor space, nor no created thing can touch." And I really thought that was amazing. And if you cash it out, what it means is, that your identity is not equivalent to your biography, and that there is a place in you where you have never been wounded, where there is still a sureness in you, where there is a seamlessness in you, and where there is a confidence and tranquility in you. And I think the intention of prayer, and spirituality, and love is now and again to visit that kind of inner sanctuary.

Where do these connections lead me? To prayer? I don't know. Maybe to difficulty--and the still, sure place on the other side of difficulty(?) Biography is not identity, but maybe it's the tool we use to make the journey from here to there.

--If that is not utter nonsense to say.

...Oh, you're very sweet;
Thank you for the flowers and the book by Derrida,
But I must be getting back to dear Antarctica.
Say, do you have a ship and a dozen able men that maybe you could lend me?
Oh Antarctica.

Audio of the John O'Donohue interview (MP3, 53 minutes). Mr. O'Donohue died in January of this year.

Training Climb One

2008-03-08T09:39:00.006-05:00

Okay, I wouldn't exactly call it a "climb". Vermont's distinctive Camel's Hump is more of a hike. But we DID use ice axes on the way up and even, for a short stretch, crampons. Mostly we slogged along in snowshoes. But JohnTheClimbingMentor and I appeared to have the mountain to ourselves. It was a beautiful day, with hazy views from New York to New Hampshire. And a great opportunity to learn a few things about mountaineering stuff. Thanks John. And thanks heaps to Sarah for hanging out with Fergus and Norah so I could have this opportunity. When you add it all up, our debt to Sarah and Todd is enormous. Thanks.

Another Father's Lament

2008-03-06T17:02:00.010-05:00

Thanks to Angus for noting this piece on his weblog.

What follows are not my words--and I don't agree with some of the implications here--but Darren Gowen lost his daughter to leukemia in 1999, and his pain is clear.

So. An admonition: pain into action.

"Lessons Learned"
By Darren Gowen
Published September 8, 1999 in the Free Lance Star, Fredericksburg, Virginia

IF I SEE, HEAR, OR READ one more thing about breast cancer, I'm just gonna throw up," she said as we stood at the microwave in the visitors' lounge watching chicken reheat. It was late in the evening and quiet on the hospital's pediatric inpatient floor.

We were sharing a respite from our children's cancer treatments. Her son had osteosarcoma, a bone cancer. Evidence of his four-year battle included a missing leg and a shiny bald head, the result of surgery and chemotherapy to counter the cancer's every move.

My daughter had leukemia, a condition that had relapsed following a bone-marrow transplant. Bald too, she had difficulty walking, and had recently been informed that her treatment had failed and that she would not live to see the millennium.

If given a choice, parents would gladly choose for themselves to have cancer over their children. But cancer never gives them such a choice.

I've been thinking about the woman's words. The television and print-media blitz on breast and prostate cancer is a mixed blessing. The focus on detecting such cancers provides a needed community service to the extent it motivates individuals to contribute time and money to cancer organizations. Also, breast and prostate cancer are relatively common among adults. Over the last decade, for instance, the incidence of breast cancer ranged between 76 and 123 per 100,000 women. The mortality rate was 27 per 100,000.

But cancer is entangled in politics and corporate greed. Government agency budgeteers take advantage of politicians' pandering by spiking their proposals with much-needed requests for cancer research funds. Meanwhile, to boost profits, drug companies invest heavily in advertising and lobbying to influence the political funding process.

Like the mother of the boy with osteosarcoma, I do not appreciate this frenzy over adult cancers. I acknowledge bias, having recently lost a child to leukemia. Yet I wonder: To what extent does the emphasis on breast and prostate cancer hamper the detection and treatment of other cancers? Do the extra dollars going toward breast- and prostate-cancer research pull away dollars that might otherwise fund studies of other cancers?

The National Cancer Institute's proposed budget for the coming fiscal year indicates a clear emphasis on breast and prostate cancer. At the institute's Web site, I ran a word count on "breast" and "prostate" and got a large total. However, "child," "pediatric," "leukemia," or any other term connected to childhood cancer only sporadically showed up in the mammoth site.

The incidence of childhood cancer is 14.1 per 100,000. Although the mortality rate for children with cancer has decreased by 42 percent in the last two decades, cancer's incidence has increased 10 percent. For black children, the increase is 14 percent.

Particular childhood cancer rates have seen higher increases: soft tissue sarcoma and brain cancer, 25 percent; acute lymphoblastic leukemia, 20 percent. Though it appears that the incidence and mortality rates for childhood cancer are small next to cancers among adults, if analyzed in terms of lost years of life, childhood cancer is much more devastating to society.

The average age of mortality for adults with cancer is 50, which represents a loss of more than 20 years of life per adult. In contrast, a child who dies from cancer loses 60 to 65 years of life.

This incalculable loss, however, is not immutable if we understand that research on childhood cancer is often successfully applied to adult cancer. Cancer scientist John Lazslo calls childhood leukemia a "stalking horse for other cancers." When childhood leukemia is cured, he says, cures for the rest will soon follow.

The first cancer clinical trials involved children with leukemia. Children with cancer are usually otherwise healthy and can tolerate greater drug intensity than adults. Each child that has participated in a clinical trial to test a new treatment but succumbed to cancer has bestowed a precious gift--improved treatments--on those, including adults, later diagnosed with cancer.

Much of the early development of bone-marrow transplantation targeted children with immune-deficiency diseases and other causes of bone-marrow failure. Since then, both adults and children with leukemia and other cancers have received bone-marrow transplants.

Some important discoveries about the molecular biology of cancer have originated in pediatric studies. The study of the rare pediatric eye cancer retinoblastoma led to the landmark discovery of the first human cancer gene. The absence of this particular tumor-suppressor gene leads to several adult cancers--including prostate cancer.

The first applications of gene therapy in children with brain cancer and neuroblastoma, a cancer of the central nervous system, are under way at a children's hospital, and eventually will have adult applications.

Our daughter participated in the first comprehensive trial of an immunotoxin. The side effects from the experimental therapy were devastating, and the eventual result was not positive. But we know of several children who are alive today because of it. Treatments using immunotoxins will soon help adults with cancer and AIDS.

Children with cancer have given a tremendous gift to adults with cancer. Are we adults so generous?"

Source: http://home.att.net/~gowfam/lessons.htm

Vermont Town Meeting Day Propaganda

2008-03-04T08:35:00.005-05:00

Since it's town meeting day here in Vermont, here is a gentle political digression:

The kids made this stuff at a recent "Kids for Obama" event at Barre's L.A.C.E. There was a microphone for kids to chime in with their political thoughts, ad-lib song performances, or whatever. Fergus gave a speech that he wrote in the car on the way over:

The crowd (of 8 or 10 other kids and their parents) went wild.

Apparently, Obama wants this for America:

Long Run Sunday (AKA "Long Run Sunday Pain Report")

2008-03-02T07:46:00.004-05:00

Well, I ran 10k on the treadmill yesterday, and my aching back isn't any more aching--and my tendency lately toward waves of queasiness has not gotten any more wavy. So I'm going to try a long run, on a route I'm calling the Snow Hill Nine-Miler (since the hardest part is an extended hill on Snow Hill Road).

The roads are covered with snow, it's 16 degrees (F) with happy little flurries coming down. It won't be fast. But it might be fun. Or it might be kind of endless. We'll see.

So the run is done, and here's the report:

Even though the roads were not "icy", they were mostly covered with loose snow, which meant a little bit of slip underfoot with each push-off--kind of like running nine miles on loose sand. I didn't exactly break any speed records.
I had to walk several times, especially on the hills, which seemed particularly daunting today. Still recovering from that virus, I suppose.
I very quickly felt tightness in my right knee, which became more and more distracting along the route. This is most likely an ITB issue that I need to stay on top of--probably with the help of a physical therapist.
Dismayingly, after about 7 miles my left calf started cramping up intermittently, in that sudden way that makes you stumble and almost fall. This is the sort of thing that started up around mile-20 on the only marathon I've done. I'm going to blame this on The Virus, too, but I also wonder if I should be taking some supplements or something to maintain my, um, electrolytes.
The good news is, I did the nine miles, and I'm I'm not (yet?) hobbling around like a broken man.

The Viewer's Platform

2008-03-01T10:18:00.006-05:00

I just learned that Lauren and the kids (who have been on the fence about coming to Seattle during the climb) might have a chance to house-sit here:

It's a recent remodel in the Wallingford neighborhood. The views from upstairs include this...

...And This.....

...which will be a great way for Lauren and the kids to keep tabs on me (this is basically a view of our climbing route, albeit from 65 miles away), but DANG, it's going to be hard to leave this house to hunker down on the side of a glacier. Maybe I should just stay in Seattle and LOOK at the mountain?

This Looks More Like a Descent....

2008-02-29T16:11:00.006-05:00

The punishment for Mystic-Leg-Press Hubris, apparently, is back pain. Two days after impressing myself with my own leg strength at the gym, I tweaked my back badly enough (moving a bed) that I've only been able to work out twice in the last two weeks (my house has also been plagued by a nasty, lingering, flu-like virus, which we've all had to one degree or another).

All of these things are making me cranky.

It's not like I'm running out of time to train for the Rainier climb. But I'm also training for the Vermont City Marathon (my second marathon), which is at the end of May--about a month before the climb. And I'm kind of assuming that the marathon training will do a lot to get me ready for Rainier.

But this is Week 6 of an 18-week marathon training program, and I'm supposed to be building my weekly mileage from 24 miles to 44 miles.

So far, I'm going backwards. Planned mileage in parentheses.

Week 1 actual mileage: 12 (24)
Week 2 actual mileage: 22 (25)
Week 3 actual mileage: 11 (22)
Week 4 actual mileage: 10 (29)
Week 5 actual mileage: 9 (30)
Week 6 actual mileage: 0 (26)

It makes for a sad picture:

Alien Presidents: The Card Game

2008-02-26T15:04:00.006-05:00

Sorry to disappoint my many fans of high-altitude adventure and/or everyday life-threatening illness, but this post has nothing to do with mountain climbing and nothing to do with childhood cancer. But it does have something to do with the charm of eight-year-old minds.

Today Fergus decided to create a card game called "Alien Presidents". Not only did he make up the rules (such as they are) but he created each card from scratch and did all the scoring (thus earning us a modicum of homeschooling points).

I won't go into all the details, but basically each player picks two cards at a time, each of which has a certain number of points associated with it: add up the points on your two cards, compare your points to those of the other players, and the person with the most points wins that round. Then everyone discards (or "disgorges," as Fergus sometimes says) one card, and picks a new card for the next round.

Each card features an "alien" version of current US political figures, and discards go either into a "Graveyard" stack or an "Evolution" stack. When we played it, we always discarded to the Graveyard. It's worth noting, however, that when all players ran out of new cards to pick, we were free to pick them from the Graveyard--a process that seemed eerily familiar when I pulled the Dick Cheney card out of the stack.

I have no idea how the "Evolution" stack might work.

Here are the "stats" from some of the cards, if you want to create your own deck (each one features a drawing of the "alien" in question, but you'll have to imagine those):

Name: BARACK OBAMA
Points: 54
Spaceship: SITH RIDE
Planet: SITH
Species: SQAKE

Name: DICK CHAINIE
Points: 105
Spaceship: ZARTRON
Planet: WEIRDO
Species: INSECTOPUS

Name: GEORGE BUSH
Points: 93
Spaceship: ZOK DEATH SLOOP
Planet: DIGPLOOM
Species: ROBOID

Name: KARL ROVE
Points: 82
Spaceship: SNAIL STRIKER
Planet: QUORG2
Species: SNY ("Snee")

Name: JOHN MCANE
Points: 71
Spaceship: QUORGETIC BOUNDER
Planet: QUORG
Species: FLYCTOPUS

Name: CONDELISA RICE
Points: 69
Spaceship: FANTASY SHOOTER
Planet: ZOKK
Species: FRIZARD

Name: HILARY CLITON
Points: 15
Spaceship: SIXSIX ENSOCKER
Planet: SIXSIX
Species: ROBONITE

At one point during our game, Fergus eyed the Graveyard and said, "I'll discharge George Bush as waste." And look, I'm not one to launch into political commentary in forums like this one, but....

Oh, it hardly seems necessary, does it?

Alien Presidents (C)
Age: 8 and Up
Teaches: Second-grade addition (with "regrouping"), not to mention contempt for U.S. politics.

"Late Effects"

2008-02-23T19:30:00.002-05:00

From a recent article in Newsweek:

Childhood cancer is not the killer it once was. Seventy-five percent of kids diagnosed with it go on to have long lives. But survival comes at a cost: two thirds of patients suffer from lingering effects, sometimes from the disease but more often from the medicines that cured it. "Childhood therapy is often stronger than adult therapy," says Dr. Robert Hayashi, a pediatrician at St. Louis Children's Hospital. "That can wreak damage on a growing body." Radiation and chemotherapy may stunt physical and mental development. Survivors may find themselves unable to concentrate for more than a few minutes, or exhausted by the smallest tasks. Time is also known to work against them. "As these patients get older," says Hayashi, "they start to show symptoms that may have been silent for years."

First you spend three years keeping your kid alive; then you spend the rest of your life worrying about him. Full article here.

"You're Not The Only One"

2008-02-22T10:45:00.008-05:00

Now this is interesting.

"Peach" has cooked up a groovy blog-writing / book-publishing / fund-raising hybrid thing that's kind of fun. Check it out.

Has anything happened to you?

Well, yeah, of course it has. So write about it already, and send it to Peach. The deadline is February 29th.

If you're lucky, it will become part of a book, the proceeds of which will go to support War Child, an organization that...

"...works with children affected by war in Afghanistan, Iraq, Democratic Republic of Congo and Uganda. Our work with former child soldiers, children in prison and children living and working on the streets gives them support, protection and opportunities. To make sure we provide them with what they need we involve them directly in all our decision making."

Your submission does not need to relate to any of the themes that spin off of this kind of work. Mine, rather predictably, was a blog post I made (elsewhere) last spring about Fergus' leukemia and the fear of relapse:

Wet Shoes, Dropping Shoes

We had a wet snowfall yesterday, and as I left the gym. picking my way to the car through the slush, I started thinking about the end of treatment, and how Lauren and I will live with the possibility of relapse.

In short (because it was a short walk to the car), it comes down to what may be a minor distinction:

Lauren will spend the time waiting expectantly for the Other Shoe to drop. I think there is some comfort for her, or self- protection anyway, in holding onto a sense of inevitability about bad events, as if they are the flip side to the many good events in her life. I won't say this is some sense of a higher power at work in her life; it could simply be a sense about the sheer chance of bell curves. But it's a powerful, semi-inevitable power at work.

I, on the other hand, will fear relapse pretty much all the time, but if it happens I don't think I will feel any larger forces at work, not even chance. The earth will just fall out from under me--because of the specific, terrifying actuality of relapse. And then we'll move on and do whatever needs to be done.

These comparisons (accurate or inaccurate as they may be) washed through my mind as I got out my keys and unlocked the car. I'm not sure where they came from; I guess they are always there, and they simply bubble up when there aren't a lot of distractions around.

Then it hit me, as it sometimes does, like something half-forgotten: You have a child with cancer. It's an astounding, surreal thing to feel all over again. Your son has leukemia.

Re-absorbing or re-feeling that truth quickly discombobulated everything I had been thinking.

The truth is, I don't know how I'll feel when he goes off treatment, as we sit around waiting for something to (not) happen. Cancer is so big, so hard to get your head around, that it's hard not to think of larger forces at work. Or anyway, of forces that work mysteriously, with little predictability. I don't know if the forces are part of the fabric of the universe or just part of the fabric of my son's bone marrow. But the shoe will dangle. And it will be out of our hands.

Posted by robbo on April 13, 2007 2:05 PM

But this is just what I had lying around. SURELY YOU CAN DO BETTER. So go ahead.

Thank you so much to Angus for pointing this project out.

ALMOST a New Tent...

2008-02-22T07:15:00.006-05:00

I don't think I've ever bid on any eBay item before, but I ALMOST became the proud owner of a 4-season North Face tent the other evening ("no holes but no poles").

Unfortunately, I was out-bid at the last minute, as I slept, by my new nemesis, "Goretexsteve."

Sorry, you were outbid. This item sold to gortexsteve for US $198.25.

Damn You, Goretexsteve.

Correlation, Causation, Chemicals, Congress, Cancer

2008-02-16T13:17:00.015-05:00

You might know her as Don Imus' wife.

Pause.

But Deirdre Imus is also deeply involved with the Imus Ranch for Kids With Cancer and, near as I can tell, someone who is convinced that health begins with a relatively chemical-free life. Today she is celebrating International Childhood Cancer Day with an article about chemicals, cancer and political will, over at the Huffington Post.

I'm not totally convinced by her chemical absolutism, but is it rather shocking to read this:

In 1976 Congress passed the Toxic Substance Control Act (TSCA) with the goal of protecting the public and the environment from the harm caused by toxic chemicals. Three decades later, most of the 80,000 chemicals used in commercial products today have never been evaluated for safety by the Environmental Protection Agency (EPA).

And this:

In 1998, the PBS series Frontline aired a story, "Fooling Mother Nature," about toxic chemicals and their affect on humans. Dr. Christopher DeRosa, a director at the Agency for Toxic Substances and Disease Registry (ATSDR) stated the obvious. "If you start to look at all the data together, you start to see a convergence", said Dr. DeRosa. "It is time for public health action...we may not have a smoking gun, but there are bullets all over the floor."

Even more shocking to me (despite the small sample size), is the cord blood study that she refers to, the Executive Summary of which says:

In a study spearheaded by the Environmental Working Group (EWG) in collaboration with Commonweal, researchers at two major laboratories found an average of 200 industrial chemicals and pollutants in umbilical cord blood from 10 babies born in August and September of 2004 in U.S. hospitals. Tests revealed a total of 287 chemicals in the group. The umbilical cord blood of these 10 children, collected by Red Cross after the cord was cut, harbored pesticides, consumer product ingredients, and wastes from burning coal, gasoline, and garbage.

This study represents the first reported cord blood tests for 261 of the targeted chemicals and the first reported detections in cord blood for 209 compounds. Among them are eight perfluorochemicals used as stain and oil repellants in fast food packaging, clothes and textiles — including the Teflon chemical PFOA, recently characterized as a likely human carcinogen by the EPA's Science Advisory Board — dozens of widely used brominated flame retardants and their toxic by-products; and numerous pesticides.

Look, I don't know what caused my son's leukemia. Recent research on twins seems to indicate a two-stage cause: an initial genetic predisposition (perhaps created very early after egg fertilization) and a later environmental "trigger" that sets off the uncontrolled growth of the leukemic cells.

We have wondered about that environmental trigger.

Was it something in the soil where he used to play "Bob the Builder"? Our house at the time was near an old smokestack....what sort of chemicals would a woolen mill spew into the air? And how long would they linger in the soil?

Then there was the T-Shirt-dying warehouse across the street. Foul smells would sometimes emerge from that place, and strange colored smoke that stained their own roof red.

Happily, we've moved from that town.

We've concluded, though, that the most likely cause was the flu that Fergus came down with 10 months before he was diagnosed. I had never seen him so sick. In fact, he looked so bad that (embarrassingly enough) I took his picture.

It was Christmas, 2003. He was three years old. By the following November, he was a boy with leukemia.

But there's no way of knowing if this was the trigger. In fact, I think we had avoided giving Fergus a flu shot that year because, well, three years old just seemed too young to be injected with whatever it is that comes inside those hypodermic needles.

But if we had given a flu shot that year, would we be wondering whether the shot had been the triggering event?

...Or was it some other, more subtle, trigger--like maybe exposure to of one of those 80,000 untested chemicals that Deirdre Imus talks about?

Frankly, we'll never know. For Fergus, it's too late to matter. For other kids, though? It means all the world. And the bullets are all over the floor.

Clueless Shopping

2008-02-15T17:14:00.013-05:00

Among my many deficits when it comes to climbing real mountains is a nearly complete lack of equipment. I have some nice, heavyweight Merrell boots (and they're in remarkably "like new!" condition) that I bought fifteen or twenty years ago, but JohnTheClimbingMentor says they are not really stiff enough to wear with crampons and, oh, I might end up with a touch of frostbite. And, as my brother-in-law will attest, my little tent (a state of the art lightweight tent in 1977) has such a foul smell that, when he borrowed it back in 2000, campers in adjoining campsites were making jokes about it.

This was in Michigan, where smell is no laughing matter.

And then there's the question of sunglasses.

From what JohnTheClimbingMentor says, spending time on a glacier at 14,000 feet without special mountaineering glasses is asking for a fine case of snow blindness. This is not always a good thing when you're walking around on icy inclines somewhere up in the jet stream, surrounded by bottomless crevasses.

In fact, the intensity of ultraviolet rays increases 5% for every 1,000 vertical feet of elevation gain. So, you know, I'm convinced.

So I get my eyes examined, by a real eye doctor, and I start shopping for "real" mountaineering glasses, ideally ones that I can later use when I'm, you know, turning the compost pile and stuff. So now I've narrowed it down to two fashion choices: the Denali and the Zermat.

The denali says: modern fellow, reads a little non-fiction, hopes to drive a Miata one day.

The Zermat (which sounds like the Swiss town of Zermatt, one of my father's most memorable ski destinations) says: retro fellow, James Joyce on the mountaintop, hopes to eat pemmican and whale blubber one day, prefers "Touching the Void" to "Into the Wild," uses archaic diction about modern subjects ("I brook no quarrel with Thom Yorke's approach to popular music"), hopes to own a vintage pickup truck one day.

Guess which one I'm leaning toward?

Mystic Leg-Press Breakthrough

2008-02-14T10:17:00.004-05:00

Just a week ago my standard leg-press weight was 170 lbs. But at the gym last night I had some sort of mystic leg-press breakthrough, and suddenly I am leg-pressing 230 lbs.

Maybe my legs are nervous about this climb too?

Vermont Winter = Rainier Summer?

2008-02-12T16:39:00.001-05:00

It's been a relatively mild winter here in Vermont, thought we're having a bit of a cold snap at the moment. It was three degrees (F) yesterday morning when I got up. Still, that's not all that cold for a morning in early February (in Vermont)--but cold enough.

The thing is, the wind was coming up, and by the time I got off the bus in Burlington the wind was gusting to 30 MPH. That brings a wind chill of about twenty degrees below zero.

It was a looong 12 minute walk to my office in that wind.

My face hurt. It just plain hurt.

The wind made me grimace, and I had to remind myself to pull my lips back over my teeth because they hurt too. And I worried, irrationally, that they would shatter into little bits, like safety glass.

Man.

I know it will be June when I'm up on Rainier, but doesn't it get weather like this? Even in June? I mean, doesn't it basically stick up into the jet stream?

All I can find right now is a current forecast for the Rainier summit…it says the low tonight on the summit will be minus 13, with 44 mile-an-hour winds. That's a wind chill of minus 50 degrees.

It's no walk to the office.

The Mountain is Out

2008-02-05T08:50:00.001-05:00

I woke up today to someone shaking my foot, vigorously. And again.

What? What?

It's my wife, and she's whispering forcefully: "Get up."

It's 6AM. One of my days to stay home with the kids.

I stumble out of the bedroom and she's waiting for me in the hallway, an anxious look on her face. I think: what is it? A death in the family? Has one of the leukemia kids relapsed? Is our son okay? Or is it just something online about the presidential race?

In fact it has snowed overnight, the roads are not really plowed yet, and the car is stuck at the bottom of the hill. She could call AAA for a tow, but she thought I might want to give it a try. We live in Vermont, after all--we're not supposed to call AAA. A half hour later I'm home with the car, and Lauren has given up plans to go work out at the gym.

And at this point you're thinking: What does this have to do with climbing Mount Rainier?

Well, there are a lot of reasons I want to make this climb, but one of them has to do with childhood cancer.

And while our 8-year-old son completed his leukemia treatment (2-1/2 years worth) in June of 2007, even still we live with its threat. Its presence has woven itself into our lives. We wake up with it. It hangs over us like--well, like Mt. Rainier hangs over the Seattle area on those clear days when they say:

The mountain is out.

An early awakening, a look on a spouse's face, a boy with a fever, a phone call from our son's clinic--these little moments are filled with awful possibility.

I don't want to overdramatize, but I hope we (all) can get out from under this mountain some day. Until then, it's waiting to be climbed.

Another Long-Run Sunday

2008-02-03T11:42:00.001-05:00

Sundays are "long-run" days for those of us training to survive marathons and mountain climbs. Today's goal: a nine-mile run through the idylls of rural Vermont. Today's actuality: A nine-mile run/walk (1 hr and 41 minutes) featuring slippery roads, a light snowfall, worrisome knee pain, and troublesome hills. I did learn that running with a water bottle in hand when it's 27 degrees outside has some advantages: instead of the water getting warmer and warmer with every mile, it gets colder and more refreshing. Happily, it never quite froze. I guess this bodes well for the refreshing quality of Mt. Rainier drinking water.

Because It’s There

2008-02-02T11:46:00.001-05:00

Look, we've got a mountain to climb, but…

Bergschrund?

Serac?

On Belay?

I've got a lot to bloody learn.

Current Donations

2008-01-01T14:59:00.017-05:00

Thanks to all for supporting CureSearch National Childhood Cancer Research Foundation!

Donate Here....

[DONATE]

Or Here...

Please consider dropping me a line (baseballpajamas [AT] gmail [DOT] com) or leaving a comment on this site when you do, just to let me know (and so you can get your props). Thanks!

For the record, CureSearch is (quote) exempt from U.S. Federal income taxes under Section 501(c)(3) of the Internal Revenue Code and your donation is tax deductible to the extent provided by law (unquote).

Secure donations are facilitated by "SixDegrees.Org" and the "Network for Good".

SMALL PRINT and other donation info HERE
(includes donation info for the online-skittish)

Donating Online: The Small Print

2008-01-01T10:25:00.003-05:00

I'm teaming up with an organization called Network for Good/SixDegrees to facilitate online donations to Curesearch NCCF.This organization tries to minimize the "overhead" associated with charitable giving by streamlining the transactions involved (i.e. by focusing on electronic transactions). Network for Good uses industry-leading Secure Sockets Layer (SSL) technology to keep your personal information as secure as possible.

Online donations are simplest via credit card or Paypal (if you have a Paypal account), but you can also make an "online checking" donation by entering some key information from one of your checks. However, due to the higher processing fees associated with online checking donations (that are ultimately incurred by the charity), the minimum donation amount for this method of donation is significantly higher (see below).

If you want to avoid the whole online thing and mail a check:

Info about donating by phone, mail, or FAX is here. Note that donating this way will not add it to the donation tally for the Mt. Rainier climb, but it still accomplishes the main thing, which is supporting the cause. If you do this, leave us a comment here so that we can give you the thanks you deserve.

Donating online through Network for Good does require that you "register" online with them. But their privacy policy makes it clear that they "will never sell, trade or rent your personal information to other individuals or companies." In other words, you won't be flooded with junk mail and spam after you donate through them.

Here is more about donating this way (taken directly from the Network for Good website (as of March 2008):

How do I make a donation?

Making a donation on Network for Good is easy. Network for Good's web site features a Giving Cart - a "shopping cart" that enables you to make a single donation or multiple donations to a variety of nonprofit organizations all in one visit. You will be asked to create a Profile for future giving, as a way for you to save your contact information and to store your donation history for future reference.

To make a donation, you first need to find an organization you want to support in the GuideStar database. To do this, go to the Donate section, and use the search tools provided; you may search by keyword, location, or organization name.

Once you identify an organization that you would like to support, click the Donate Now button. On the following page, enter the information requested, including the donation amount, your donation preferences, your donation designation (optional), and your donation dedication (optional). When completed, click the Add to Giving Cart button.

On the next page, you will see your Giving Cart, which lists your donations. On this page, you may Change your donations, or Remove them from the Giving Cart. From this page, you may click to Make Another Donation or you can click Continue to proceed to check out. By clicking Make Another Donation, you will return to the Donate section, where you can conduct another search for a charity, and add the donation to your Giving Cart.

Once you proceed to check out, you will be prompted to sign in to Network for Good. If you are a returning donor, enter your e-mail address and password and click Sign In. If you are a new donor, simply enter your e-mail address and click Continue.
Enter your billing information, as requested, and click Continue. On the following page, review your donation and billing information. If any of it is incorrect, click Change. If it is correct, click Complete Donation.

How does the money get to the organization of my choice?

Network for Good works through VeriSign to get payments from your credit card, PayPal, and/or bank accounts. If the charity you recommended has provided its electronic funds transfer (EFT) information to Network for Good, your donation will be electronically transmitted through our secure servers to the charity's bank account. If the charity has not provided EFT information, Network for Good will mail a check directly to the charity. Donations are sent to charities on the 15th of each month.

How does the Network for Good Giving System work?

Once you locate a charity that you would like to give to, click the Donate Now button and follow the step-by-step instructions provided. When you make a donation through the Network for Good Giving System, you can be certain that your charitable donation is 100% tax deductible and the organization of choice is a legitimate charity that is recognized by the Internal Revenue Service and in good standing.

Network for Good will confirm that your recommended charity is eligible to receive tax-deductible contributions and will process and distribute your donation to the charity you have selected.

As required by the Internal Revenue Service ("IRS"), Network for Good has exclusive legal control over any donation processed on our website. In the rare event that a charity you have recommended does not satisfy Network for Good's criteria for receiving donations (i.e., it has been classified by the IRS as a disqualified supporting organization, it cannot or does not accept donations, is not recognized by the IRS as a public charity, or is not in good standing with federal and state regulators), Network for Good will select an alternate charity to receive your donation funds.

Like any tax-deductible charitable contribution, any contribution using the Network for Good Giving System cannot be canceled or returned once it has been completed.
Network for Good, in technical terms, is treated as a "donor-advised fund," a 501(c)(3) organization that collects contributions from donors and distributes such contributions to 501(c)(3) organizations in good standing with the IRS recommended by you, the donor.

Network for Good will never refuse to distribute a contribution to a valid public charity recognized by the IRS because of philosophical differences or charitable preferences.

Is there a minimum/maximum donation amount?

For credit card/PayPal donations, the minimum donation amount is $10. For online check donations, the minimum donation is $200 since the fee for check transactions is $10. Online checks are a economical decision for higher dollar donations.

The maximum donation amount for PayPal is $10,000 and for credit cards it is $99,999. The maximum check donation is $25,000 per transaction and $50,000 per donor in the same day.

How is my check accepted over the Internet?

An Internet-based check transaction is similar to a paper check transaction except that Internet checks are processed electronically using the Automated Clearing House (ACH) system that banks use for electronic deposits and payments. This requires that you enter the numbers imprinted on the bottom of your paper check which are the bank routing (ABA) number and bank account number (combined they are also known as the MICR numbers, which stands for magnetic ink character recognition). Our check provider, TeleCheck, converts this information into an electronic item and then processes it through the ACH.

The fee for processing an online check donation is $10 for a single donation, or $5 per donation if multiple gifts are added to the giving cart. We require a minimum $200 for online check donations to make this option cost-effective for the recipient organization.

How will my checking account information be stored?

Your checking account information will not be stored with Network for Good and is only used for processing your donation. Your information is also used by TeleCheck for the purposes of processing your online check and anonymously retained for use in their positive and negative check database. At this time, Network for Good also does not offer recurring donations, but we hope to offer this functionality in the near future.

Why is the processing cost different for credit card donations and online check donations?

For credit card transactions, Network for Good is charged a variable percentage of the transaction by Visa, MasterCard, American Express, and Discover in addition to flat per transaction fees. For online checks, Network for Good is only charged flat per transaction fees, although these flat fees are considerably higher than through credit cards. Donors can choose to add or deduct the 4.75% of credit card transaction. The fees for online checks are automatically deducted; $10 for transactions containing 1 donation and $5 per donation for transactions containing more than 1 donation. Online checks are recommended for higher dollar donations.
Network for Good does not profit from fees.

Electing to contribute directly to a charity (through their own website) does not mean that you avoid paying processing fees; all charities incur fees with processing donations. Network for Good is explicit in explaining the fees and we give you the opportunity to cover them within the transaction. Even when you do not elect to cover the processing fee, using our website still saves your favorite charity money because our processing fees are extremely low. Many charities have to pay more to credit card companies.

Are the fees to process check donations the same as credit card/PayPal donations?

No, the fees for online check processing are a flat fee regardless of the size of your donation(s). For transactions containing 1 donation the cost is $10. For transactions contains more than 1 donation (if you are giving to more than one charity in your shopping cart) the cost is $5 per donation. These costs are deducted from your donation before it is paid to the recipient.

How do I locate the routing/account number on my check?

The routing number is always a 9 digit number and usually located between the symbols on your check. The account number is between 10 and 15 numbers and is usually located before the symbol on your check. Neither of these numbers includes your check number.

How will an Internet check transaction appear on my bank statement?

A complete description of the transaction will be included in your bank statement. This description will include most, if not all, of the following information: check number, merchant name, settlement date and check amount. This information appears on your statement where other electronic payments (such as direct payroll deposits and ATM transactions) are listed.

CureClimb 2008

Until We Meet Again....

Camp Schurman (Resting Up)

Camp Schurman (Resting Up)

Camp Schurman (Resting Up)

On to Camp Schurman

Brief Rest at Camp Curtis

Conquer Childhood Cancer Act to Become Law

Camp Curtis: Brief Rest

Climbing the Interglacier

Moraine, Glacier Basin

Sunday Evening at Glacier Basin Camp

Looking Fresh and Happy

Glimpse of the Mountain

Sample Rainier Pictures: Happy and Innocent

Closer to Sea Level

Bob and Rob on the Summit

Climb Note

Rough Itinerary

The Mountain is Out (Again)

Today's Normal

Emmons Route Report: June 12

The F45RC1 Mount Rainier Playlist

Tour of Our Route: July 2007

Sunrise at 12,000 Feet

Childhood Cancer Act Passes Through US House of Representatives

CureSearch Praises Passage of the “Caroline Pryce Walker Conquer Childhood Cancer Act” in U.S. House of Representatives

You're not the Only One

This Week's Poster Boy?

Forecast: 7 Below Zero (F) + 45 MPH Winds....

I take it back: It's NOT Simply There

Rainier Backcountry Trails and Backcountry Report: 6/5

Crevasse Rescue Training: The Bob Report

Emmons Route Report: June 3

Meet the Team: JohnTheClimbingMentor

New Normal Old Normal

About the Marathon

It's Simply There

Our Story: Take Two (Lauren's 9/2007 Radio Interview)

1979 To 1997

First 2008 Report From the Emmons Route

Marathon Results (Sunday 5/25)

Incidentally: Jon Lester

Did I Mention...

The Bob Mountain Report

Late Night Leg Pain Blues: A Short Annotated History

Non Sequitur in Yellow and Brown

Day 2 And Beyond

Of Piglets

Last Long Run Sunday....

Today's Mt. Rainier High-Camp Weather

Musical/Political Interlude

Long Run Sunday: Twenty Miles of Running on Empty

Two Trials

(Gone to the Squirrels)

Coming Your Way, June 22

Dex-Pulse Anniversaries (Long Post)

Dex Week: Introduction (4/2006)

Dex Week: Day 1 (4/2006)

Dex Week: Day 2 (4/2006)

Dex Week: Day 3 (4/2006)

Dex Week: Day 3 (Addendum) (4/2006)

Dex Week: Day 4 (4/2006)

Dex Week: Day 5 (4/2006)

Dex Week: Day 6 (4/2006)

Dex Week: Day 7 (4/2006)

Long Run Sunday Pain Report Redux

Special Thanks...

Like I Said, It's Sugar Time in Vermont

Our Story: Take One

Tomorrow: Training Climb Two

For the Record, It's Sugar Time in Vermont

I (Still) Keep Seeing This Shape

Meet the Team: Dancing Bob

I've Been Seeing This Shape...

In the Right Light You Look Like Shackleton

Training Climb One

Another Father's Lament

Vermont Town Meeting Day Propaganda

Long Run Sunday (AKA "Long Run Sunday Pain Report")

CureSearch Praises Passage of the
“Caroline Pryce Walker Conquer Childhood Cancer Act”
in U.S. House of Representatives