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 ShoeI love her. And the family we have.
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.
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
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