Tuesday, March 31, 2009

I'm Not This Rob Ryan Either



...but if you're in NYC and like this sort of thing, by all means drop in.

Tuesday, March 24, 2009

It's Not Like We've Forgotten

It's not like we've forgotten. Reminders abound. Fergus says his leg hurts and Lauren and I give each other a look. Fergus gets a fever and we worry about his immune system. Fergus says he has a burning sensation along his side and we think it might be shingles.

Lauren has trouble sleeping for long periods. We get edgy. We snap about the little things. And we study his 8-week blood counts like tea leaves, looking for warning signs, or subtle trends. And while we accept the kindness and reassurance of the peedonk staff, we partly wonder if they wonder, too, like maybe they've seen it before but they know there's no point in speculating about relapse until it actually occurs--occurs in an obvious, scientifically verifiable way.

I have not mentioned Fergus' leukemia on this web log since mid-December. But even though he's almost 2 years off-treatment, it's here with us still, and reminders of its presence come often--in news stories about power lines, in inaccuracies our children are taught about their immune systems, in the songs that pass over us, or the seasons that remind us of diagnosis or induction or D.I. or whatever.

I was going to write here about the singer Sufjan Stevens, whose oddly wide-eyed pop songs have intrigued me for a long time. But he is also one of those artists whose records I have never gotten around to buying. I just wasn't sure. So there I am the other day, listening to "Pandora" internet radio, when a Sufjan Stevens song starts playing. It catches my ear a bit. I check the title, and I'm amused to see it is called "Casimir Pulaski Day" (from the album "Illinois").

And then, there it is in the lyrics of the song, The Reminder:

Golden rod and the 4-H stone
The things I brought you
When I found out you had cancer of the bone

Your father cried on the telephone
And he drove his car to the Navy yard
Just to prove that he was sorry

This morning on Facebook Lauren posted an eloquent description of how we live these days, of the ongoing--if sometimes muffled--fear we live with, and how it gets muddled in with everything else. I share it here:

The Other Shoe

Fergus is now 21 months off-treatment for acute lymphoblastic leukemia. He is doing great; growing taller, getting stronger, attending school, and developing crushes on girls. He sees a therapist to work through some anger issues. Rob and I are in therapy too; both together and individually, working hard to make sense of the last 5 years. Norah is thriving, loving school and challenging herself every day. We are well.

Before I even had a child diagnosed with cancer, people (usually people who loved me) often noted I was one of those “other shoe” kinds of people. My vigilance and ability to imagine and worry over any number of future scenarios caused my friends to accuse me of always waiting for that other shoe to drop. A few years ago, I searched for the origin of that expression, and found this:

“Its source would seem to be the following story. A man comes in late at night to a lodging house, rather the worse for wear. He sits on his bed, drags one shoe off and drops it on the floor. Guiltily remembering everyone around him trying to sleep, he takes the other one off much more carefully and quietly puts in on the floor. He then finishes undressing and gets into bed. Just as he is drifting off to sleep, a shout comes from the man in the room below: ‘Well, drop the other one then! I can’t sleep, waiting for you to drop the other shoe!’ This may come from music hall or vaudeville, though it would seem that nobody has been able to tie it down more precisely.”

That idea haunts me these days. We survived 2.5 years of Fergus’ chemotherapy, and now almost 2 years of no chemotherapy. I have had my moments of worry, and many more moments of joy and gratitude. When we passed the 18 month off chemo mark, I felt a great sense of relief as I realized the time between 15 and 18 months had loomed in my mind as “likely relapse” time. Come January, I was distracted from any leukemia fears as Fergus turned 9 and I struggled to adjust to sending my children to school, after years of homeschooling. Life has been rich with new found friends and the exciting experiences brought by school. And I am suddenly a basket case. In therapy recently, I confessed to the awful fear that I was somehow looking for Fergus to relapse, inviting relapse into our lives. My therapist helped me understand that I was so sure the other shoe was going to drop that I just wanted to get it over with. One friend suggested I was standing around with an anvil hanging over my head, waiting for it to fall. If I felt certain it was going to fall, then of course I felt like begging it to just fall and be done with it. When really I’d rather it not fall at all. Never. Ever.

I remember when Fergus was first diagnosed that we handled everything amazingly well. Yet at each new stage, as the “hard part” ended I would struggle emotionally. I have seen this pattern repeated with my friends in the pediatric cancer world. The battles and the hardest times bring out the strength in parents; the more “relaxed” times allow us to fall apart. Finishing that first awful month of induction and finally hearing the word remission—that brought tears of exhaustion more than joy. Entering the relatively easy phase of maintenance brought the awareness of how much farther we had to go. The end of chemotherapy did bring joy and celebration, but also renewed fears of relapse. I wonder if somehow this transition into the world of school is triggering this new round of fears. So much has changed for us with this simple decision. We have a lovely new community; the children are thriving and happy; we have a family identity beyond childhood cancer. Amidst all this joy, my heart seizes with fear and my breathing is shallow. If we move on, and I let go of leukemia and focus on the future without cancer, will the disease come back, the other shoe drop? Back in April, 2007, Rob wrote about relapse and shoes on his blog. Check it out if you can:

http://rryan.blog.uvm.edu/2007/04/

The thing is, I am not a crazy sad person. Despite what I write, we have been experiencing mostly joy in our life without cancer for a while now. I am not always afraid. In addition, these past six weeks have given me some semi-concrete reasons for my fears. For the first time since treatment ended, Fergus had a blood value flagged as low, back on February 4th. His hematocrit was just a touch below normal. The doctor part of me knew this was not a problem. Other values were all fine, right where they’d been. The mother part of me fretted. Then Fergus had two days of unexplained leg pain, which went away as mysteriously as it arrived. Then he was hit by one of the local nasty end-of-winter viruses. It got us all, but only he had a fever for six days. Then he went on antibiotics for strep throat, and lost his appetite. Innocuous enough events, but similar to how things were in the two months prior to his diagnosis. He has a weird rash on his arms. He is having trouble sleeping, and is therefore tired and cranky at home (though perhaps not at school). He looks pale to me, despite his tendency to rosy-cheekedness (even that statement evokes the memory of our pediatrician saying, “I’m not worried about the anemia. It must have been a mistake—he doesn’t look anemic, does he?” That was about ten days before he was diagnosed.) Because of the weird symptoms and the lower hematocrit, I very much wanted to check his counts before his eight-week appointment came, particularly because I will be in Tucson during that appointment. So I consulted the nurses, trying to make sure we left enough time after the last illness for his counts to be unaffected by a virus. We got those counts last Thursday, the 19th. Norah’s sixth birthday. But I needed too much from those counts. I needed them to fluctuate up some, enough to both reassure me about current worries and serve as a lesson to me that values could dip, I could see “symptoms,” and yet six weeks later, everything could be fine.

I didn’t get what I needed. Oh, his counts were good, as the nurse reported. As a single off-chemotherapy CBC, all was well. Only a parent following trends, a mother in the grip of worry, could find cause for concern. And I did. His hematocrit is not higher; in fact it dropped a tiny bit. His other values are still normal, but his hemoglobin is lower now than it has been since treatment ended (he runs between 12.4 and 13, and was 11.9 on Thursday). His neutrophil count is still normal, but at 2950 it matches the lowest mark it hit since chemo ended. Nothing is really wrong, and yet I am mired in fear.

I know the way out of the fear, and I’m slowly getting there. We have a plan. His oncology check up is on April 2nd, and his annual physical is April 7th. Two good examinations with two people I trust. We probably won’t check counts—too soon—but I will take advantage of April vacation at the end of the month and get counts then, rather than waiting for the next official time at the end of May. Plans help me gain control of my fear. The other thing that helps with my fear, perhaps oddly enough, is remembering that we all walk around under shoes; under anvils even. The difference for pediatric cancer families (or any family that has weathered a life-threatening crisis) is that we know the name on one of those shoes. We know the identity of one of our threats. But we’re really not that different; none of us know what next month will bring. With a little more work, I might bring my heart and head around to the fact that as of today, Fergus is still cancer free, and his greatest concern is how I honk the horn at the girl he admires.
I love her. And the family we have.

The Sufjan Stevens record is already in the mail.

Casimir Pulaski Day

Golden rod and the 4-H stone
The things I brought you
When I found out you had cancer of the bone

Your father cried on the telephone
And he drove his car to the Navy yard
Just to prove that he was sorry

In the morning through the window shade
When the light pressed up against your shoulder blade
I could see what you were reading

Oh the glory that the lord has made
And the complications you could do without
When I kissed you on the mouth

Tuesday night at the bible study
We lift our hands and pray over your body
But nothing ever happens

I remember at Michael's house
In the living room when you kissed my neck
And I almost touched your blouse

In the morning at the top of the stairs
When your father found out what we did that night
And you told me you were scared

Oh the glory when you ran outside
With your shirt tucked in and your shoes untied
And you told me not to follow you

Sunday night when I cleaned the house
I find the card where you wrote it out
With the pictures of your mother

On the floor at the great divide
With my shirt tucked in and my shoes untied
I am crying in the bathroom

In the morning when you finally go
And the nurse runs in with her head hung low
And the cardinal hits the window

In the morning in the winter shade
On the first of March on the holiday
I thought I saw you breathing

Oh the glory that the lord has made
And the complications when I see his face
In the morning in the window

Oh the glory when he took our place
But he took my shoulders and he shook my face
And he takes and he takes and he takes

Sunday, March 22, 2009

Sap Run Song

Sounds of Spring in Vermont (sap buckets in our side yard).









Light, Mud, Sap, Snow (Spring)

Friday, March 20, 2009

Thursday, March 19, 2009

From the Vermont Same-Sex Marriage Open Forum

My favorite twitter post from last night's same-sex marraige discussion at the Vermont statehouse:

"...and you know that same-sex relationships are different because?...band camp?"

http://twitter.com/jason_pelletier

Tuesday, March 17, 2009

Irish Poem While Driving

After dropping the kids off at school this morning I happened to listen to The Writer's Almanac on NPR, which today featured a well known poem by W.B. Yeats called "Adam's Curse".

While I wouldn't normally think that poetry and driving were compatible, as I bumped over the County Road this morning I heard this poem anew, so to speak, and it struck me again what a great poet Yeats was. Of particular note was his comparison of the moon to a shell:

A moon, worn as if it had been a shell
Washed by time's waters as they rose and fell
About the stars and broke in days and years.
...but there's a lot going on in the poem, and there's durn near something for everyone there:

We sat together at one summer's end,
That beautiful mild woman, your close friend,
And you and I, and talked of poetry.
I said, 'A line will take us hours maybe;
Yet if it does not seem a moment's thought,

Our stitching and unstitching has been naught.
Better go down upon your marrow-bones
And scrub a kitchen pavement, or break stones
Like an old pauper, in all kinds of weather;
For to articulate sweet sounds together
Is to work harder than all these, and yet
Be thought an idler by the noisy set
Of bankers, schoolmasters, and clergymen
The martyrs call the world.'

And thereupon
That beautiful mild woman for whose sake
There's many a one shall find out all heartache
On finding that her voice is sweet and low
Replied, 'To be born woman is to know—
Although they do not talk of it at school—
That we must labour to be beautiful.'

I said, 'It's certain there is no fine thing
Since Adam's fall but needs much labouring.
There have been lovers who thought love should be
So much compounded of high courtesy
That they would sigh and quote with learned looks
Precedents out of beautiful old books;
Yet now it seems an idle trade enough.'

We sat grown quiet at the name of love;
We saw the last embers of daylight die,
And in the trembling blue-green of the sky
A moon, worn as if it had been a shell
Washed by time's waters as they rose and fell
About the stars and broke in days and years.

I had a thought for no one's but your ears:
That you were beautiful, and that I strove
To love you in the old high way of love;
That it had all seemed happy, and yet we'd grown
As weary-hearted as that hollow moon.

--"Adam's Curse" by William Butler Yeats. Public domain.

Happy Saint Patrick's Day.



(The poem starts at about 2 minutes)

Saturday, March 14, 2009

Ticking From Potterville

We've started a bit of a Harry Potter kick here, lately. Ergo, this is our favorite song of the week. This one goes out to Svenja, just because.

Thursday, March 12, 2009

Windy Night at the Sugar House

This picture does not begin to do justice to this scene. Smoke, steam, sparks. Neighbors making syrup.

My New Friend

...I'm so cool.

Wednesday, March 11, 2009

Localvore Lunch

There I was, lapping up a perfect work-from-home lunch of thick and yummy french toast made with a rustic loaf of bread, looking at the sap buckets on the trees across the road, when it occurred to me that I had inadvertently prepared quite a "localvore" lunch:

The bread came from East Hardwick (28 miles away by car).
The milk was processed in Barre (9 miles away).
The eggs came from some friends' hens (2.5 miles away).
The syrup came from Templeton farm, two houses south of here (.5 a mile away).

Yum. Templeton Farm, By Tim Seaver:



Monday, March 9, 2009

Gymnasticobirthdaygirl


Party Day (Edit)
(Thanks Jennifer!)
Even though her birthday isn't for more than a week, Norah had her birthday party this weekend at a local gymnastics gym, joined by friends from baby playgroup, her public-school preschool class, the homeschooling community, Maple Hill Farmschool, the Vermont childhood leukemia community, and her new friends at River Rock School. It was fun!

Sunday, March 8, 2009

First Run

Today was pretty much my first real run in 2009--four miles around Sodom Pond with a brief stop at a sugarhouse where the some of the locals were boiling down the second batch of the season.

Yesterday and today were definitely Mud Season. But snow is due tomorrow.

I'm supposed to run 13 miles as part of a relay team at the end of May. Figure I better get to it.

Saturday, March 7, 2009

The Boots

Artwork by Karen Green, David Foster Wallace's wife; his boots.

"Maybe dullness is associated with psychic pain, because something that's dull or opaque fails to provide enough stimulation to distract people from some other, deeper type of pain that is always there, if only in an ambient low-level way, and which most of us spend nearly all our time and energy trying to distract ourselves from." -David Foster Wallace

Friday, March 6, 2009

One Thing Twitter is Good For

Getting (creepily mundane?) daily weather updates from David Lynch.

Father Son Chat

Nine-year-old boy: "Do you know what I do to make the girls at school laugh?"

His father: "No, what?"

Boy: "Well, so far it hasn't worked."

Father: "Okay, but what do you do?"

Boy: "I fall down on the floor and I say, 'I meant to do that!'"

Father: "And what do the girls do?"

Boy: "They just look at me. And then they go back to talking."

New Friends in Interesting Places



I guess this is the sort of thing that happens when you use twitter to follow the CA supreme court debate over Prop 8?

UPDATE: Actually, Same Sex Kiss Day seems kind of fun. It's April 15, 2009, happening mostly at a Starbucks (?) near you--not that finding a Starbucks is as easy in Vermont as it is everywhere else.

Thursday, March 5, 2009

F45th Record Club Shortlist


Mulling over my 2-song submission to the upcoming False 45th Record Club Meeting. I should be working--you know, because I'm at work. But my psyche totally scrambled today, though. Maybe I should just go home.

Submission deadline is Sunday. Much could change between now and then. For example, "Al Bowlley's In Heaven" is sounding awfully timely.....

Wednesday, March 4, 2009

Monday, March 2, 2009

DF Wallace Ephemera



Briefly, because I'm working. The New Yorker has just uploaded a couple scanned manuscript pages from an unfinished David Foster Wallace Novel. The marginalia, the marginalia. Mr. Wallace killed himself in September.


More here.

Sunday, March 1, 2009

Snow Dog

For those of you who don't know him, meet Teague.