A Change of Seasons
This week we experienced another change of seasons as summer suddenly turned into autumn. The change wasn’t all that noticeable, however, at least here in Oklahoma, where we’d just experienced a rather mild August and a nice beginning to September with plenty of rain.
I love fall though. The days are pleasant and mild. The nights start getting cooler. The wind dies down. The leaves begin changing colors, as if God is out there painting them all.
The movies start getting better. The new TV season begins. And college football somehow makes everyone believe, once again, that their team has a shot at a championship… at least for a week or two.
Despite my love for autumn, it doesn’t seem to care much for me. September has been a particularly cruel month for my family over the years. I won’t get into it here, but I can say that I’ve often identified with that Green Day song, “Wake Me Up When September Ends.”
And despite my love for fall, I must admit that I hate to say goodbye to summer. Nine months is a long time for a person like me, who may never see another summer day.
“Hey, whatever happened to the cup half full?” I’m sure you want to ask.
I know, I know. But the longer I get into this, the harder it is to watch the seasons change.
Five Years Ago
It was five years ago, September 21, 2004, when doctors had to amputate my right arm.
It was a grim time, as I recall, and I mentioned that I’d probably never be able to write about it. It seemed too dark, too personal, too sad.
However, a friend of mine named Joe, who is wheelchair bound, predicted I would eventually write about it. According to him, I would eventually accept it, laugh about it, and start making morbid jokes about those events.
I guess he was right, for I’m currently finishing up my manuscript for a new book. It’s about becoming suddenly handicapped after 40 years.
The title? Well, I have two working titles, and I’m undecided which is the better choice. The first title is I Survived an Amputation, but Never Became the Bionic Man. And the second is A Farewell to Arm.
Which title do you prefer?
At a Loss for Words
This is much harder than I ever anticipated, this living with a terminal illness. And I anticipated it would be extremely hard.
We live an almost surreal existence. Every other week, I have chemo. For three days afterward, I have no energy. Every two months or so, I’m off to Houston to be tested at M.D. Anderson. And each couple of days, we hear that somebody else has died of cancer. Ted Kennedy, Patrick Swayze, Henry Gibson, Myles Brand.
Some are hidden away, where they won’t be seen by the public. Others become yellow, gaunt, and wrinkled, growing old before our eyes.
I mention this to my wife. “Let’s not talk about,” she says. And I know she’s right. Why talk about such ugly things?
Meanwhile, “normal” life, which can be exceptionally hard all by itself, goes on. There’s a job to hold down, so we can maintain our insurance, pay the bills, and keep my daughter in school. I’m trying to finish two books. I’m a husband, a father, a son, a brother, a friend. There are chores to be done. And there are tough decisions to be made.
With life, one day things seem to be fine. Then the next day it’s utter chaos.
And here, on the “Life is Real” blog, I’m challenged to comment on it all, to describe what life on this side is like, maybe even make a little bit of sense along the way–often when I’m utterly perplexed, without energy, struggling with hope and chemo brain.
I don’t always know what to say. Often, I’m at a complete loss for words.
I do know, however, that people are depressed enough without me helping them along. So I search for silver linings, the positive spin, funny anecdotes, the cup half full.
That’s the better road, I think, trying to keep smiling. I opt for the reality PC (personal computer) rather than the reality TV approach, where people tune in to “Jon and Kate Plus Eight,” hoping to watch another family go down in flames.
Who’s Encouraging Whom?
I was invited to speak at a cancer survivor’s conference last weekend in Houston. It was the “Living Fully With, Through, and Beyond Cancer” conference, put on by M.D. Anderson Cancer Center and the Anderson Network. I was a breakout session leader amidst a group of well-credentialed speakers, most of whom had ”M.D.” following their names.
My topic? Writing Through the Hard Times. I spoke about how my cancer memoir (”I Survived Cancer but Never Won the Tour de France“) came to be written and how I was able to get it published despite many obstacles. I also shared some poetry from my books and spoke about the stories behind a lot of my health-related poems.
My goal was to encourage the audience. For I was well aware that when a person gets cancer, he or she is confronted by the reality of their mortality. They often become reflective about life, and, as a result, so many want to share their stories. So I hoped to encourage them to share those stories in whatever way they could, through writing or otherwise.
My talk was well received, but as it so often happens, I was the one who found myself being encouraged. For part of my talk involved telling the audience about my current situation, my stage four cancer and poor prognosis.
Person after person approached me in the hours after my talk. They told me stories of how they had been told they had weeks to live, but were still here years later. They told me about all of their surgeries, chemo sessions, and experimental treatments, and many of them had been at it a lot longer than me.
“Never give up,” they would say, smiling, with wisdom and tears in their eyes.
It had been a difficult week, to put it mildly, another doozy in the annals of a crappy year. I had entered the conference hoping and praying that I could just hold it all together. But by sharing my story and listening to theirs, I found enough strength to make it through once again.
Eighteen Years Ago
So we’ve finally sent our first child off to college, and as a result I can’t help but think how fast those eighteen years went by. It doesn’t seem that long ago when it all began, back in the spring of 1991.
Back then, LeAnn started having contractions in the middle of the night. We were professionals though, having been through birthing classes at Baptist Hospital. And so, as recent graduates of that distinguished program, we didn’t panic. Our suitcases were already packed and waiting by the door. We knew all the latest Lamaze techniques. Plus, the contractions were twelve minutes apart. We’d been taught that the contractions had to be five to six minutes apart before it was time to head to the hospital. This could be false labor, after all.
When the labor pains stayed at the same rate for a couple of hours, I eventually got dressed and headed to work at my law firm in downtown Oklahoma City. We knew what we were doing. There was plenty of time.
Going to work that day was no easy feat. I had recently blown out my knee in a lawyer’s league basketball game. This was no minor injury. The doctor (fortunately one of the best orthopedic sports injury surgeons in the country) said it looked like I’d been in a car accident. Both my ACL and MCL had been torn through. I had a lot of cartilage and miniscus damage and my knee cap was broken. It was now a month post surgery, but I was still hobbling around on crutches, unsure if I would ever walk without a limp again.
Because I’d missed a lot of work, I couldn’t let these possibly false labor pains cost me another sick day.
But at work I couldn’t concentrate. I called LeAnn every hour, just to make sure she was okay.
“So? How far apart are they now?” I’d ask.
“Oh, about nine minutes, sometimes longer,” LeAnn would reply.
“Guess I’ll stick around then.”
By two p.m. I’d endured as much as I could, so I drove the twenty miles back to Norman. We had no cell phones, of course, which meant I was out of communication for at least thirty minutes. I’m pretty sure I made it home in record time.
When I arrived at home, all was well. The contractions were still eight minutes apart. So LeAnn and I decided to do some physical activity to help things progress. As I remember, we walked a bit and pulled weeds in the front yard.
When the contractions were a steady seven minutes, we decided we might as well head to the hospital. After all we’d already been at this for half a day, and it would be getting dark soon. Plus, every now and then, a contraction would be really severe, so we figured things were progressing. By the time we’d make it to the hospital, a forty minute drive, we assumed the contractions would be five or six minutes apart.
On the way to the hospital, the pain really kicked in. I remember the worst contraction hit as we were on the exit ramp from I-35 to I-240. LeAnn cried out and I had to slow down. Meanwhile I was wondering if we had waited too long. (Every time I’ve been on that exit ramp since, I’ve remembered that moment.)
We made it to the hospital while it was still light outside. As I checked us in, they wheeled LeAnn up to the new maternity ward. I hobbled along a few minutes later, still using my crutches.
Unfortunately, when the nurses checked, we weren’t even close to where we needed to be for delivery. The pains were coming and going, and for a time we thought they were going to send us home. We walked up and down the hospital halls, hoping the situation would improve.
By ten p.m., the contractions were pretty steady and five minutes apart. So it looked like things were a go. Unfortunately, our doctor was out of town and wouldn’t be there for the delivery. We would have to make it with her partner.
It had already been seventeen hours. The pains were getting severe, and LeAnn was hoping that she had progressed to the point that she could have an epidural. But the answer was always no.
LeAnn was exhausted, but so was I. After all, I’d been on crutches for weeks and wasn’t ready for so much time on my feet. Meanwhile my role as “cheerleader” had been reduced to designated fanner. LeAnn was burning up, and the only way she could get any relief was if I fanned her directly in the face. I would fan with one hand until it started cramping, then I’d shift to the other hand. Back and forth. Hour after hour.
At some point, sometime well after midnight, I called LeAnn’s mom in to help with all this fanning business. She took over my job, and I literally passed out on a bed next to LeAnn. (She never lets me forget this, even though I only slept for fifteen minutes or so.)
It was a crazy long night. We passed the twenty four hour period, with contractions steady at two or three minutes apart. But we still hadn’t progressed enough for the epidural, and the nurses told us we might be looking at a Ceasarian section. This was discouraging news to say the least.
Fortunately, everything changed as the sun rose. The epidural was finally administered, the doctor was called in, and as the nine o’clock hour rolled around it was time.
How do you describe the birth of your first child? It is a miracle, like nothing else you have ever experienced. It will make you believe that anything is possible.
As our baby was delivered, we learned, for the first time, that she was a baby girl. We named her Madison, and I cut the chord.
Afterward, I went out to the waiting room to tell the grandparents the great news. But I got choked up, and couldn’t say a thing. I went back in and composed myself, then came out and gave them the good news.
That night, a nurse brought Madison into our room. LeAnn was asleep, so the nurse brought her over to me. I took her into my arms, and she slept cuddled up beside me.
That was eighteen years ago. I was just a twenty-seven year old kid, about to begin the ride of my life.
Off to College
So we’ve just come back from California after taking Maddye to college.
It was that pinnacle moment parents hope for and dread: when their oldest child heads off to try to make it on their own.
After 18 plus years of sheer craziness–diapers, colic, doctor’s offices, vaccinations, birthday parties, bedtime, bicycles, scraped knees, lost teeth, best friends, former best friends, teachers, hair cuts, braces, holidays, sleepovers, sibling rivalry, camps, middle school, sports teams, boyfriends, high school, distancing from parents, driver’s ed, first car, first wreck, prom, missing curfew, graduation, and that turbulent post-graduation summer–it suddenly comes to an end.
Last week, we had four in the house. Now there’s just three.
It was an emotional week, and I found myself spontaneously sobbing from time to time, just thinking about how far away Maddye would be from us. It shook us all up, I think, from grandparents to little brothers, but it was particularly hard for me to say goodbye. Even one semester is a long time when you have health like mine.
As we were in Maddye’s new room about to say goodbye, I was reminded of that time when Maddye was just a toddler, perhaps a year and a half old. It was “parents night out” at church, a monthly event when the church provided free childcare so parents could have a little break, otherwise known as “date night.”
We had left Maddye with grandparents before, but we had never left her for the whole night with anyone else. LeAnn was getting ready, so she asked me to run Maddye over to the church, then come back and pick her up.
When we arrived at the church, I picked Maddye up in my arms and carried her over to the building where parents night out would be taking place. Upon entering the room, the first thing I noticed was that it was loud. Extremely loud. Obnoxiously loud.
I saw that several other children had already arrived, and their ages were pretty spread out. There was an infant and another toddler or two, all confined to a holding area in the center of the room. Outside of this holding area, however, there were several other kids, some in the 4 to 5 year range, and several much older than that. These groups were chasing each other around the room, throwing balls, yelling all the while.
I counted more than ten kids, but there were only two workers. It was early, however, so more workers were probably on the way. But that was something I really couldn’t bank on.
As I handed Maddye over to the worker who was in the holding area, Maddye gave me this look I’ll never forget. She had the biggest eyes, you see, and big crocodile tears were forming there. Her chin was quivering, and she looked truly scared. She held out her arms and cried, “Daddy, don’t go!”
I told her it was okay, that we would be back in just a little while. But she didn’t believe me. She just kept holding her arms out and crying.
This shook me up rather badly, I’m afraid, but I managed to turn and walk away. But just as I was leaving the room, two more kids were brought in, making the kid-to-worker ratio even worse.
I stopped and turned around. There was Maddye, in the midst of all that noise, noise, noise, noise, holding her arms out to me, crying, begging me to take her back home.
I arrived at home ten minutes later, holding Maddye in my arms. “I couldn’t do it,” I confessed to LeAnn, who just shook her head. “You’re such a softie,” she said.
Seventeen years later, standing in a dorm room in Santa Cruz California, I’m halfway wishing it would all happen once again. That just as I’m about to leave Maddye would hold out her arms to me and say, “Daddy, don’t go!” And then I would swoop her up and return to Never Never Land.
Of course I don’t really want that. I want Maddye to live her life, to spread her wings and fly. I want her to believe in herself, to be confident, not scared.
Truth is, this time it’s me who’s scared. This time I’m the one with the tears in my eyes and the quivering chin. This time it’s me who is about to look at her and say, “Maddye, don’t go!”
But I don’t, of course. Instead, I give her the longest hug I can, then, fighting off the tears, I turn and walk away.
Death Be Not Proud
Senator Ted Kennedy died last night, they’ve announced, and discussions have already started about his legacy. While I’m not a Kennedy expert, his passing does remind me of a great poem and book.
In his famous sonnet, “Death be Not Proud,” poet John Donne argues that Death should not take pride in itself or its power, because it is, itself, a slave to fate and chance and the whims of kings and desperate men. Plus, who are Death’s closest companions? Poison, war, and sickness, to name three. How fun can that be? And Death may be mimicked by other means, say the effects of a poppy or a “charm,” like hypnosis perhaps.
And finally, in the end, Donne argues, Death itself dies when we awake in eternity.
It’s an excellent poem, no doubt, and something we should all read and think about, if given the chance.
But for a real battle between Death and Life, one that borrows its title from Donne’s sonnet, you should pick up Death Be Not Proud, the inspiring memoir by John Gunther.
It’s a short, devastating book. I read it last year, and, man, did it mess me up. But in a good way, you know. The way only sad books and movies can.
In the memoir, Gunther chronicles the incredible fight both he and his teenage son Johnny put up when sixteen year old Johnny is diagnosed, like Kennedy, with a highly aggressive brain tumor. The book brings Donne’s poem to life, as Death, the ultimate villain, strives to snuff out a promising life, a loving family, and joy, perhaps forever. Meanwhile, Johnny, who is a smart, talented, and funny kid, and his resourceful father struggle to stay one step ahead of Death, hoping to somehow outwit or outwill it at a time (the nineteen forties) when cancer resources and medical options were few.
The battle lasts seventeen months, before Death seemingly calls out a triumphant, “checkmate.” But wait, not so fast. For Gunther, in writing the book, captures another way in which Death may be defeated: through story. That is, by capturing the story of a determined and loving father doing all he can possibly do to save his child. And by capturing the story of a young man courageously fighting off agony and despair and physical illness.
It may sound grim, but Death Be Not Proud, despite all the sadness, is a hopeful, inspiring book. For although Death won the battle, the Gunthers won the war. Sixty years later, John Gunther’s story lives on, a portrait of parental love, that special love that fights on despite heartbreaking challenges. And Johnny Gunther’s story lives on too. It is a narrative of that lonely battle so many cancer patients fight, a battle against not only a killer disease, but also against emotions, as they must watch those closest to them hurting.
We are all writing a story, by our actions, decisions, and words. And Death should not be proud, for where is its victory in regard to a life well lived?
The Telephone Call
It had been a long, emotional day of tests at M.D. Anderson Cancer Center.
First blood work. Then a chest x-ray. Next, I had to gulp down two large bottles of banana-flavored barium contrast. Then an IV was inserted, followed by a chest CT scan. And to top it all off, a lot of waiting with nervous people.
Test days can be hard for anyone, but I think it’s especially difficult for one-armed people like me. There’s lot of changing clothes, putting on this, carrying that, i.e, tasks that I’m not particularly good at. It’s stressful, and matters of privacy aren’t the hospital’s primary concern.
Anyway, I’d managed to get through it once again, and I was standing downstairs in the lobby, waiting for my wife and son to pick me up in the car. They’d been out shopping while I did the lab rat thing.
As I was standing there waiting, a family walked up and took their place on a nearby sofa. A man of 60 years or so then took out his cell phone and made a call.
“Hey. It’s me… Yeah, we just got through visiting with the doctor… Get this. It’s good news. They couldn’t find any cancer on the scans…. That’s right. Mama won’t have to do any chemo for the next two months. Then we’ll come back and check her again.”
As I listened to this call, I found myself thinking about how much I’d give for news like that. Two months without chemo? That sounded like heaven. I mean, really. Sixty days without chemo sounded about as good as it gets.
I had been having chemo every two or three week for 22 months. I’d already endured 35 rounds of the stuff, only taking breaks for surgery or a few days of vacation.
I nearly lost it, standing there, considering what my life had become and the relentless nature of my chemo regimen. It had surely prolonged my life, and some of my greatest memories had resulted. But it was grueling all the same, and there was no end in sight.
This is where I live, hating chemo and loving it too. Happy some days, sad on others. Trying to tell you readers out there, as best I can, to go live your life, without sounding preachy or melodramatic.
Upcoming Cancer Survivor’s Conference
On September 10-12, 2009, M.D. Anderson Cancer Center will be holding its 21st annual “Living With, Through, and Beyond Cancer” Conference at the Marriott Westchase in Houston. The Conference is open to anyone whose life has been touched by cancer, including cancer patients, family members, caregivers, and practitioners.
The keynote speaker will be Hoda Kotb, a cancer survivor and co-anchor of NBC’s Today Show. Ms. Kotb will be speaking at 10:45 a.m. on Saturday morning, September 12.
The Conference will include several wellness workshops, like massage, Tai Chi, and aromatherapy. Plus there will be numerous breakout sessions with a variety of speakers talking about such issues as fear of recurrence, caregiver’s feelings, diet, and health insurance.
I’ll be leading a breakout session on Friday September 11 from 11 a.m to 12:30 pm. My topic will be ”Writing Your Way Through the Hard Times,” and I’ll be reading from my cancer memoir, poetry books, and at least one essay from this Life is Real series.
If your life has been touched by cancer or if you live anywhere in the Houston area, I’d love to see you at the Conference!
Registration is $75 and includes several meals. Go to www.mdanderson.org for more information.
On Sunday, a Confession
From time to time, perhaps six times a year, I’m asked to speak at a church service. Sometimes people ask me to speak about poetry. Sometimes they ask me to address my experiences with cancer. Sometimes I’m asked to reflect on the “spiritual side” of dealing with serious illness.
This morning it was my pleasure to speak at Unity Church in Norman. I spoke about the similarities between poetry and prayer, and my son Ford joined me to do a couple of songs.
It was a good morning. A bit warm outside, perhaps, but after being cooped up inside all week recovering from chemo and a virus, I’m not going to complain about too much sunshine.
Anyway, during the service, the congregation sang several worship songs, some that I knew and some that I didn’t. This reminded me of my days growing up in a Baptist Church, singing all those old hymns. Over the years I probably sang every hymn in the Baptist Hymnal at least two dozen times. Some, like ‘Just As I Am,” “At the Cross,” and “Amazing Grace,” I probably sang well over a hundred times.
And then I remembered how my friends and I would always change the words in the songs in order to make each other laugh. It wasn’t exactly sacrilegious, we were just kids for crying out loud, but it wasn’t the holiest thing I’ve ever done either.
“Bringing in the sheaves” (whatever a sheave is) became “bringing in the cheese.” “Softly and tenderly, Jesus is calling,” became “softly and tenderly, pizza is calling.” ”Go tell it on the mountain,” became “go smell it on the mountain.” And “oh how he loves you and me” became “oh how he loves to eat meat.”
I guess we were hungry when we wrote a lot of these.
After the service, as I was driving home, I began thinking about my talk that day and how I got started writing poetry. And then, somewhat ironically, it dawned on me that a lot of my earliest work began there in the pews of that Baptist Church I attended, rewriting words to those old hymns.
”It is swell, with my goat,” I’d whisper into my sister’s ear, rewriting the words to “It is Well with my Soul.” And as she started giggling, I’d sing out loud, “It is swell, it is swell, with my goat!”
Okay, well at least now I’ve confessed.
