14 Apr My Cancer Diary, Volume VI
Dear Friends and Family,
The cheery clarion of sun wakes us up most mornings these days and lingers well past dinnertime, though chilly showers still puddle the ground and keep our coats and mittens close by. But the pear tree across the street has just erupted into full blossom, our own private promise that spring is here to enliven us again.
Those blossoms have come to signal another yearly milestone for me. Four years ago tonight, Linda and I ventured across the street from our apartment in Manhattan. Then, as now, we mazed our way through a protracted, nine-month ordeal, full of doctor’s offices, endless tests, and the occasional outburst of anxiety. Then, as now, one of us was just being allowed up from three months in bed with the occasional foray onto the couch. And then, as now, we had counted the minutes until the arrival of spring. That night we sat in a neighborhood Italian restaurant, ordered flatbread pizza and our first glass of wine in months, and simply enjoyed being out of the house. What I most remember from that evening was looking into Linda’s eyes and thinking, “She’s ready.”
It was April 14, 2005. The next day she would give birth to our daughters.
We tell time around our house by the girls’ birthday (and trust me: it comes up hourly, no matter the season!), and this year is no different. After nine-and-a-half months, twenty-nine nights in the hospital, one hundred visits to the doctor, a thousand pills, and several thirty-pound swings of weight, my chemotherapy has come to an end. I’m done. As promised, the last several rounds were challenging, as my body got weaker and the cumulative side effects worse. The short-term pain in my leg became intense with each dosage. And by the end, as I waited for the results of the final blood test that would either send me back into the hospital or absolve me from any more visits to the clinic, I was holding my breath. “Your numbers are great,” the nurse reported in a call. “You don’t have to come tomorrow.” I put down the receiver and broke down on the couch.
I arrived at this day with some trepidation. On the one hand, the daily assault on my body that began last July has finally ended. On the other hand, we are no longer actively attacking the problem. We have given my body the best treatment it can receive, and we have either killed the cancer cells that were likely circulating in my blood, or we have not. And we have no way of knowing. (For this reason I will get multiple scans every four months for the foreseeable future.) In the final weeks I begged my doctors to give me more chemotherapy if they thought it would help. The kids who more commonly get this disease are given more. But my doctors felt the possible benefits did not outweigh the considerable down sides and declared me finished. Suddenly time, which since last summer had been completely dictated by the relentless schedule of treatment, would become my own again, both a welcome and an unnerving development.
With the few weeks that have passed, my appetite, my energy, and even my hair have begun to return. (I had an inkling of hair in January, but like those sucker February daffodils that are wiped out by late-season snow, my fuzz quickly got its comeuppance. I am disheartened to report that my hair seems to be returning with bald spots in place, a cruel Groundhog Day curse to relive the arrival of middle age.) And in perhaps the most vivid parallel with pregnancy, my mind has already begun to erase the unpleasant memories. So before my own brainwashing is complete, let me close this chapter of my Lost Year by saying what I said to Linda that final night of chemo: “May you live to a ripe-old age, kiss goodnight the ones you love, and die peacefully in your sleep, rather than go through what I just went through.”
One unabashedly positive outcome of the end of chemo is that the full healing of my surgically repaired leg, which was impeded by the chemotherapy, can finally begin. As Dr. Healey said to me recently, “The clock starts now.” The reason is that until the bone fully fuses with the prosthesis, I must remain on crutches and limit the weight I put on my left leg. Nearly four months after my surgery, I am making considerable progress with my mobility. I now stand in the shower, bend over to put on my shoes and socks, and take short, crutch-aided walks in the neighborhood. Many times I look down at my leg and feel it’s a miracle it’s still there.
But there are other times when I am nearly overwhelmed by the dead weight I am dragging around and the long road I have to endure. The big picture is that one needs three muscles to walk — the calf, hamstring, and glutes – and all of mine are basically fine. I have three principle problems: limited flexibility in my ankle; restricted bending of my knee; and the loss of one-third of my quad. These alternately make sitting, walking, sleeping, driving, and making peanut-butter-and-jelly sandwiches challenging. (My wife reports that I somehow have enough mobility to remove dishes from the cupboard but not enough to place them in the dishwasher.)
I have begun physical therapy and my team is bullish on my recovery. Last week I was on an exercise bike; yesterday I was walking in a pool. But the process – call it phase four of our war – will extend for at least a year. I’ve been joking that physical therapy means taking it one grunt at a time. Or, as Dr. Healey vividly said of the chorus of aarghs and ughs that comprise a normal session, “In PT, we measure progress in decibels.”
But how about those birthday girls? How are they doing? Back in January I lay awake one night feeling that my protracted stay in the hospital following surgery and subsequent bed rest at home had left me somewhat estranged from the girls. Today, after three straight months around the house and over a month of crutching up and down the stairs, those memories seem happily remote. Tybee and Eden are barreling into their fourth birthday (or maybe I should say careening on their brand-new, “big-girl bikes” with training wheels) as feisty, sensitive, cheery, talkative, and imaginative little pre-teens – oops, little girls. They have weathered an enormous amount of irregularity in recent months, and they have done so with grace and good humor.
I am pleased to report that their color palette has tiptoed beyond purple and pink – Eden has added blue and green; Tybee has added chocolate. Ballet has been augmented with swimming. The washing of hair and the brushing of teeth now often pass without U.N. intervention. But their minds most ignite and their giggles most endear when they are making-up fantasy games with their imaginary friends, spontaneously inventing verses to a song, or chuckling through a rhyming game at dinner. I knew I had to re-calibrate my view of them when I recently found myself talking about “Terrific Tuesdays” and “Wonderful Wednesdays.” “What kind of words are those?” Tybee asked. “They’re a kind of rhyme,” I said. “But rhymes sound the same,” Eden corrected me. I gulped, saw my future flash before my eyes, and proceeded to explain the meaning of “alliteration” … to three-year-olds! I, of course, had to look up how to spell it, but by the next day they no longer did. Eden and Tybee may not yet have to do homework, but we do just to keep up with them!
And yes, there are differences between the two. Eden is the bolder dancer, the boundary tester, and the seeker of the spotlight. Tybee is the speedier reader, the more beauty conscious, and the melodramatic singer-songwriter. Tybee also appears to be the Internationalist of the two, snarfing up all the German and French books she can get her hands on and insisting that Linda teach her Hindi after a recent stint in India. Eden, by contrast, is the America Firster. Recently Tybee was quizzing me about why I say “I love you” so much. “It’s the special language of Daddies,” I said. “Would you like to know how to count to ten in ‘Daddy?’” Then I began to say, “‘I love you. I love you. I love you…’” all the way up to ten. Not missing a beat, Tybee announced, “Do you know how to count to ten in ‘Tybee’?” Then off she went on her own string of “I love yous.” Eden was having none of it. “Would you like to know how to count to ten in ‘Eden’?” she asked. “One. Two. Three. Four….”
Above all, if you had told me last summer we could get through the brunt of my treatment with only a handful of awkward moments with the girls, I would have wept at the chance. Today, I see that they may even have learned how to be a bit more sensitive, an ounce more caring, a dose more compassionate as a result of their experience with me. They run to embrace the girl with an amputated leg on the playground. They spot the rabbit with the crutches tucked away in the back of the children’s book illustration. They promise to take care of each other the minute one manifests even the slightest sniffle and have invented a special cheer to make any medicine they must take go down.
A month or so ago I made my first outing with the girls since the surgery in late December. Linda’s Mom and I took them for pizza a few blocks away. After dinner, the girls were holding Grandma DeeDee’s hands as we rounded the corner for home. I was bringing up the rear, a block behind, when Tybee suddenly broke away from her grandmother, came sprinting back to me, and offered to help with my crutches. “I love you, Daddy,” she said. A few days later Eden woke up in the middle of the night and came to my side of the bed and told me about some monster or nightmare or little girl fright. She came into my arms for a cuddle and then I persuaded her to let me walk her back to her room. As I got out of bed, she reached to hand me my crutches. If I could cling to one memory from this last year, it would be me and my daughter, walking down a darkened hall a little after four in the morning, with five little fingers grasping the spongy handle underneath my hand. The crutch at that moment melted from my arm as it was supporting her instead. I, of course, didn’t need it anymore. I was walking on air.
Us. I mentioned earlier that we tell time by the girlies’ birthday. What I meant was that for Linda and me, April 15th has always been not just about them, but about us, too. That first year it was about Linda making it through the shoals of a high-risk pregnancy, enduring the setbacks of bed rest, and prevailing through the ordeal of giving birth to two six-pound babies within thirty-two minutes of each other. Then it became about surviving our own ineptitude and maneuvering through the Herculean challenges of taking care of two babies when we didn’t how to take care of one – and still managing to emerge speaking to each other. Then it became about the weaning, the potty training, the picky-eating – the toddler two-step of terribles and tantrums that we had to traverse in tandem.
And then came this year.
And we made it through that, too.
When Linda was pregnant, every night before going to sleep we had a little poem we would recite to the girls. We both had lines; I’ll put Linda’s lines in italics.
Daddy loves you.
Daddy loves your Mommy.
Your Mommy loves your Daddy.
Your Mommy loves you.
You love each other.
You’re still individuals.
You’re still individuals.
Then we added a kind of countdown clock – our way of encouraging them to say in Mommy’s tummy for thirty-six weeks, full-term for twins.
You’ve been in Mommy’s tummy 24 weeks…
Stay in Mommy’s tummy 12 more weeks!
This poem became so meaningful that it was the first thing I uttered to Tybee and Eden on the night they were born – my attempt to calm their tears and dim the din as they made their way into an unfamiliar world. For months afterwards, when we put the girls to bed, we repeated our poem and reversed our ticking clock, beginning to log time upwards. Nowadays, we recite this poem only once a year, on their birthday, and we will do so again tomorrow night before they go to sleep. They will probably ignore us, or beseech us to read another real poem, or begin the nightly delaying tactics: “Mommy, you forgot my water.” “Daddy will you sit with us for a few minutes?” “Is tomorrow a skirt day or a dress day?” But we will persevere, put our arms around each other, and start crying before we reach the end.
Because this birthday marks another singular time. These days, when we catch each other’s eye as we dart between some ringing phone and some overboiling pot, when one of our daughters says the most absurd, charming thing, when we hear that lullaby that once drove us batty but now makes us nostalgic, or when one of our arms reaches across the bed in the middle of the night and strokes a shoulder or patch of skin, for the first time in what seems like a very long time, we don’t think only of losing one another. We allow ourselves the flicker of a thought that maybe we have endured the worst. Maybe we’ll get another year. Or maybe many more.
So on what is widely regarded as one of the most dreaded days in America – April 15th – we hope you’ll take a moment and smile at this special milestone for us, be a crutch for someone you know who may be hurting, and reach out an arm to someone you love and mark the simple miracle of another year.
And sometime this spring, when a tree near you is blossoming, please, take a walk for me.