Alternative Therapies
Last October, just after we were told my chances of surviving the Stage IV cancer that was attacking my body were less than slim, I sent a note to friends that said I was now ready to consider alternative therapies. After all, the medical options were becoming limited.
“Bring on the crazies,” I wrote, tongue-in-cheek. “I’m now ready for dandelion therapy, for a steaming bowl of rare herb soup, for that secret pill doctors ‘don’t want us to know about.’ I’m now ready to dance the hulabebang naked at midnight in the light of a full moon at Stonehenge, to rub cocoa butter on my chest in the desert sun, to shower in holy water from a distant artesian well, to eat fig leaves from Argentina. Shoot, I’ll even listen to what Dr. Phil has to say, so long as it doesn’t conflict with Dr. Seuss.”
If this brought on laughter, as intended, I cannot say. But it sure brought out the crazies, my intentionally ambiguous term for way-out-there ideas from possibly way-out-there people.
In the weeks after that entry appeared on my website (www.jimchastain.com), I’ve been given so many alternative therapy suggestions it would make your head spin. Secret teas. Strange herbs. Oxygen treatments (breathing is apparently not enough). Fermented wheat germ extract. A creamy soup. A cancer-killing mushroom from Japan.
“Man believes eating plankton stopped his cancer,” touts one ad I was sent. In the photo accompanying that ad, you see a picture of a guy who looks like the sort of guy who would believe plankton stopped his cancer. His testimony, like so many others of this type, demonizes doctors and their chemotherapies and radiation treatments. They only made his condition get worse, the man proclaims. But when he took a nutritional supplement containing marine phytoplankton, “the highest quality plankton available,” his terminal lung cancer vastly improved, he says. He urges readers to “contact these guys” because something that works so well shouldn’t be “kept secret.”
At the bottom of the ad is a rather ironic disclaimer indicating that the miracle pills are not FDA approved, are not intended to treat or cure any disease, and that no scientific evidence supports the claims made. I wonder what Plankton man thought about that.
“Cancer is a fungus,” proclaims one group, so you must fight it with baking soda, blended with a certain type of water or, even better, pure maple syrup. Something about the chemical reaction in baking soda and maple syrup is doggone miraculous. (”I suspect you know this, but cancer isn’t a fungus,” one of my oncologists quipped.)
One note I received speaks of a nutritional combo that Pfizer allegedly studied, found effective, but turned down because they couldn’t make any money on it. All you do is purchase this particular “super oxidizer” and an herb from the Amazon that is supposedly 10,000 times more powerful than chemo, and, voila, life is good.
I’m not making this stuff up.
One suggestion came from a forwarded email. As it always goes with suggestions like this, somebody knew somebody else who went to church with somebody who knew a doctor who was receiving an experimental therapy to battle his Stage IV brain cancer. The results had been, supposedly, miraculous. I was given the doctor’s contact info, so I could schedule a “consult.”
After I failed to immediately respond to the email (due in large part to the fact that I was still recovering from the bad news I’d been given), I received a note from the doctor himself, who confirmed that he had been given little chance to live, but had been responding positively to an FDA approved product. (A visit to that product’s website, by the way, confirmed that is in fact approved by the FDA–as a nutritional supplement, but not, unfortunately, as a treatment for any stage of cancer, especially stage IV).
The doctor had scheduled me for a meeting with the doctor who administers this nutritional miracle cocktail (it isn’t a drug). You might think this doctor who was holding the cure for cancer would be working at some prestigious cancer clinic in Spain or some famous hospital’s lab. But no, he was a g.p. who shared office space in Bethany.
Should I stay or should I go? That was the obvious question. Without some crazy long shot like this, my chances of survival were approximately zero. Of course the odds might be the same if I went and chose to take this stuff they were offering. But who knows? What did I have to lose?
This is the continuing mind game that is stage IV cancer.
Going against my normally skeptical approach to anything that’s too good to be true, I scheduled the consult, the thought being that this was simply more information, another option to consider. I decided to go it alone, however, because I was embarrassed by my decision and I was unwilling to ask a friend or family member to join me on this pie-in-the-sky excursion.
My consult was scheduled for 5:30 p.m., i.e., after normal business hours, which was rather odd, I thought. It was raining as I left, natch, and the sky was as dark and gloomy as my own brooding mood. I followed the directions I had received to a commercial district in Bethany, the sort of place where you’re more likely to find hardware stores and used car lots than a medical clinic.
Be that as it may, I finally located the place, which was one of those buildings that houses a variety of businesses. In order to find the doctor, I had to walk through a pharmacy and be granted admission through a locked door.
I was greeted by an exuberant doctor’s assistant, who introduced herself, then handed me a bunch of paperwork. (They had waived the normal consult fee, incidentally, because I had been referred to them by the doctor I did not know.) The paperwork consisted of a series of CYA disclaimers and legal boilerplate, the gist of which was that this treatment was not FDA approved for cancer, that it could result in all sorts of problems, including death, that my insurance would probably not pay for it, and that I would be on the hook for the bill.
I’m a lawyer, so these papers did not surprise me. They were a bit bold, however, and receiving them up front did not produce a calming effect.
I was then ushered into a rather shabby private room, not unlike most of the g.p. rooms I’d seen during my forty-five years. I had consulted with some of the best doctors in the world in an effort to rid myself of cancer, but here I was in Bethany meeting with what seemed, at the time, the equivalent of a witch doctor.
The doctor entered a few minutes later. He didn’t really look like a doctor, in my opinion. To me he looked more like a used car salesman or perhaps the “local pro” at a small town golf course. We shook hands, and he introduced himself. He had a certain nervousness about him, and he appeared unwilling to look me in the eyes.
“So Mr. Chastain,” he began. “You’re probably asking yourself what a general practitioner here in a little town like Bethany can offer you that a world famous cancer institute like MD Anderson cannot.”
Yes I was.
He proceeded to lay out his treatment plan, an FDA approved nutritional supplement infused intravenously three times a week, along with vitamin therapy (omega 3 and vitamin D3), and a strict diet. The treatments could be given in addition to my normal chemotherapy treatments or in place thereof, should I decide to forego those standard treatments.
He could make me no promises, however. The treatments, which he only gave to stage IV people like me, completely failed one third of the time, he said. Another one third went into a sort of holding pattern, while another one third showed dramatic reductions in the cancer, some to the point of total remission. (These stats are similar to the ones you get when using standard chemotherapy, one of my doctors later told me.)
But he could show me no official studies to back those numbers up. In fact, he couldn’t show me any evidence of how this product had ever been used to fight cancer or had helped anyone in my situation. There was, instead, a lot of hearsay and innuendo. A study was “about to happen” here or there. “Call this Doctor,” he said. “He’s gotten some great results, which have been documented.” “Go to this website, it has some stuff about some tests that were done in Arizona.”
“Do your due diligence,” he encouraged, before telling me how someone had gotten into trouble with the FDA by making unsubstantiated claims about the product.
“So how much are we talking?” I asked, bluntly. For that was the bottom line, wasn’t it? These alternative therapies generally come with a rather steep price tag.
The answer was $7,500 for a six week cycle, and two cycles were to be expected. So 15k, about the cost of a new car.
“That’s a lot less than one chemo treatment,” he told me. Yes, that was true, but chemo was covered by insurance.
“Think about it,” he said. “Let me know if you want to proceed. At the very least, this stuff will help you feel better.” He then introduced me to another smiling assistant, who was the licensed dietician and infusion specialist.
After that, we parted ways. And I drove home crying.
Chemo Today
I’m sitting in bed, having endured another round of chemo today in Oklahoma City. I’m barely hanging on. I have zero energy, my brain is fogged up (as Ray Davies might say), my stomach is churning, and I’m on the verge of barfing.
But I had a brief moment of semi-okayness, so I checked my email. Some wonderful notes were in there, and they cheered me up, despite how crappy I feel. I heard from two of my best friends, one who was best man in my wedding and another who is on the short list of the kindest, most giving people I know. A family who doesn’t know me, but knows LeAnn, wrote to praise her. A friend from college wrote to encourage me and to tell me how this series had helped her reconnect with someone dear. My sister sent some good news. Someone I don’t know offered a small act of kindness. Someone else wrote about Maddye. And I heard from a writer friend who wrote a moving note about making memories.
Chemo days are not the best ones for making memories. I’m challenged by my own words to remember that life is real and to do your best to make a memory every day.
But I’ve done pretty good with this today. For today my wife drove me through a sleet and ice storm so we could get chemo over with. And today I reminded my son of a song he started the other day, but never finished. He started working on it again and it has great potential. And today I received the notes I’ve mentioned, which were memories for me and hopefully for those who sent them.
Houston Poem
So here’s a new one I wrote last week in Houston.
Spring in Your Step
There’s still good news to be had,
at times, now and again, here and there.
We’d forgotten this or stopped believing.
Good news was just a novel we’d once read.
Yet there it was, free for the taking
and we weren’t sure whether to reach over
and pick it up, for it might just be
a mine waiting to blow up in our faces.
The news was only good, not great.
I hadn’t been healed. Yes, the tumors
hadn’t grown, but they were not gone.
There was still little hope of survival.
You take such news gladly though,
knowing how much worse things
might have been, knowing that you
will likely see the trees bud once more.
The Calm After the Storm
Following our rather stressful trip to M.D. Anderson last week, I’ve spent the last few days in quiet reflection. I began by finishing up the last of four blog entries I’d been writing about my family (please go back and read them if you have the chance). But then I went into contemplative mode, pondering what had just happened.
The news from Houston could have been awful. I shudder to even think about how bad it might have been; it’s so unhealthy to let the mind go there.
But instead, much to my surprise, the news turned out to be pretty good. Although the tumors hadn’t shrunk in the last three months (during which I received five more chemo treatments, a total of twenty-five since this nightmare began), they hadn’t grown either. The treatments I had endured kept the cancer at bay, for a time at least. This can only last for so long, but for now my body is holding its own.
Of course our two-day trip to Houston was much more than just having tests and awaiting results. There were travel arrangements to make (this time we flew), hotels and restaurants from which to choose, and transportation options to consider. The Oklahoman team was there, and we had to coordinate their coverage with an M.D. Anderson publicist. In addition, representatives from the hospital’s survivorship group wanted to meet with us, because their magazine is doing a story on me.
And then there were the complicating stresses. LeAnn spent a lot of her time on the phone attempting to work through numerous crises back home. Maddye, our high school senior who plans on going to Oklahoma State next year, was enrolling in a math class at OU in order to make next year a little easier. My wife wanted so much to be there to help Maddye through that process (you know how difficult finding your way around a college campus can be), but alas she was stuck in Houston with me. Then Maddye got sick. That meant getting medicine to her and finding a way for Ford to get home from school.
This is how it is for LeAnn. When she goes with me to Houston, responsibilities back home are always calling. When she stays home, she can’t help but worry about me, miles away. It’s a lose/lose situation.
So even with good news, it was an exhausting trip, both mentally and physically. I was glad, upon our return, to see the kids, along with our dog Gracie and our fat cat Ginger. I was thrilled to climb into my own bed, turn on the tv, and fall to sleep. I was thankful to wake up to a good cup of coffee and the Today Show.
This was the beginning of the calm after the storm. A time when you quietly consider what has just passed, knowing that you were lucky, knowing that another storm will soon be heading your way.
Ford
Ford was only seven when I was first diagnosed with cancer. At the time he was still involved with sports–soccer, basketball, baseball. But soon after the bad news came our way, Ford picked up a guitar. After that, sports were done. He never looked back.
I’m not saying my illness had anything to do with Ford’s decision to choose music over muscle. But I’m not saying it didn’t either. Ford is a creative soul, that’s for sure, and cancer had little to do with that. But adversity can surely take creativity on great new adventures, and Ford has seen more adversity than most kids I know.
When he was only eight or nine, Ford formed the band Refuje. He began writing songs for the band soon afterward, and he sang and played guitar too. The band often surprised people by their mature sound. Thinking they were hearing a college band, strangers would stop and ask, “How old are those kids?” “Ten,” we’d say, or “eleven,” while watching their jaws drop.
Refuje was together for five years, longer than most bands, and it was an incredible ride. Ford and his three bandmates played some of the state’s best gigs: Dfest, Opening Night, Toby Keith’s, The Opolis, Festival of the Arts, the Norman Music Festival, Midsummer Night’s Fair, etc. They shared the stage with some great bands, and they were on t.v. and radio numerous times. At the peak of their popularity, they were averaging a gig a week and were flown to Hollywood to audition for The Next Great American Band television show. (Thankfully, they didn’t make the show.)
Ever wonder why so many bands break up? There’s a good reason: it’s incredibly hard to keep a band together, something like maintaining four simultaneous marriages. Refuje finally gave up the ghost in July of 2008.
Since that time, Ford has recorded “If I Leave,” his own solo EP (six songs) at Bell Labs Recording Studio in Norman. He had an amazing group of musicians join him on that project, including Allan Vest of the Starlight Mints, Matt Duckworth of Stardeath and White Dwarfs, Dave Spindle of the Rounders, and Trent Bell of the Chainsaw Kittens. Ford wrote the songs, sang the lead vocals, and played guitar on the record, which has been praised by music critics from the Fort Worth Star Telegram, The Oklahoma Gazette, and The Norman Transcript.
These are amazing accomplishments for someone who has yet to turn fifteen. But I think I’m even more amazed at what Ford has done in the last three months, in the time after we were told that I am a terminal case and that there is little or no hope for recovery.
My family was still in a state of shock over that news, which hit in October 2008, when Ford disappeared into his room. This is not uncommon, because Ford requires more than his share of alone time. He heads off regularly to his bedroom to write songs. Writing music seems to be his way of processing life, just as writing poetry is mine.
But on this particular occasion, Ford was “missing from us” for longer than usual–several days in fact. We’d hear him in his room or upstairs strumming the guitar, banging the drums, trying out a new bass line, singing. This is good, I thought. He’s working through these trying times.
On the third day, when I returned home from who knows where, Ford met me at the door. He was a bit perkier than he had been lately, anxious to let me in on some big news.
“Dad,” he said. “I’ve been working on some new songs.”
“Oh really?” I said, as if this was new information.
“Yeah. I’m in a really good writing groove right now. Anyway, I’ve recorded the new ones, and I’ve been working real hard on the mixes.”
Whenever Ford writes a new song (at least one he likes), he immediately records it and saves it to his computer. The recordings used to be guitar and vocals only, but lately he’d been using his computer to do full mixes of some of his favorites. The songs would include backing vocals, a cool bass line, a catchy drum beat, and at times, keyboards, harmonica, synthesizer, or tambourine. Mixing (that is, blending the vocals and instruments so they sound the best) is difficult work, but Ford had been getting better at it lately.
“After that, I put the new songs and a few of my best mixes of other songs and burned them on to a CD, seven altogether. Want to go here them?”
“Sure,” I said. This is our favorite and most regular father/son activity. Ford records a new song, burns it onto a CD, then we grab a Pepsi and drive around town, listening to his latest creation. I’m always amazed when I hear the birth of a new song.
As I listened to Ford’s first homemade CD, which he calls “Night Mumbling,” I had to fight to keep myself composed. Many of the songs had lyrics, a line or two here or there, that were clearly about our family’s crappy situation. (”forget all of my troubles now,” “one by one you know we’re gonna die,” “the things I feel inside won’t go away.”) Overall, the songs weren’t “about me.” Rather, they were about living a stressful, complicated life, which for Ford includes having a very sick father.
The songs were catchy. The lyrics were good. The instruments, which were all performed by Ford, sounded great. And the mixes were much better than Ford have ever done before. I told him I loved it.
“I was thinking… maybe I could get some blank CD sleeves and markers and make a cover and back for the CD. Then I could sell ‘em for something like, uh, five bucks. What do you think?”
“Sounds like a great idea to me,” I said.
“Do you think you could sell any?” he asked.
“Probably,” I said. “I know I’d buy one.”
Ford and LeAnn went that night and bought all the supplies, and by morning I had the first three copies of “Night Mumbling” in my hand. Each had been elaborately decorated with Ford’s own artwork. It took him about thirty minutes to create each one. I headed off to work that day, promising Ford I would do my best to sell the CDs.
I met with two friends that day, and each of them asked me if there was anything they could do for my family.
“Yes,” I said. “How would you like to make a young boy happy?”
I proceeded to tell them the story of how Ford had thrown positive energy at our family’s grief by using his pain to create a brand new CD. I told them how much work he’d put into it, not the least of which was the art he’d painstakingly drawn by hand.
One of my friends bought four copies. The other bought two.
“What should we do with it?” they asked.
“Listen to it, or pass it along to someone you know who likes indie rock. Or you might just put one in the safety box, because if Ford ever ‘makes it’ in music, these will be worth a fortune.”
When I got home that night, Ford happened to be out front, taking out the trash as per his mother’s directive. His demeanor was noticeably sulky, as if he had a black cloud overhead, following him everywhere.
“Hey, I sold six CDs today,” I announced.
“Cool,” he said in a rather unimpressed way. He thought I was talking about his studio EP, “If I Leave,” not his new creation. (Proceeds from his studio EP went into the bank to pay LeAnn and I back for the money we’d sunk into that project. So Ford rarely got excited about those sales.)
“Did you sell any copies of my homemade CD?” he asked.
“Yes,” I said. “Six.” Then I handed him thirty bucks.
He seemed confused. “But I only gave you three,” he reminded me.
“Yes,” I said. ”So you need to go make me three more right away.”
At that moment a smile broke across Ford’s face that I’ll never forget. It was a smile that seemed much lighter than his normal smile, as though some heavy burden had been lifted from his shoulders. It was the smile of an artist, one who suddenly realizes that his hard work might actually payoff or that someone out there believes he has something worthwhile to offer.
Maddye
Soon after our daughter Madison was born, people began stopping LeAnn and me to tell us how unbelievably adorable she was. I say this not as a matter of pride, but as a matter of fact. It happened all the time.
“Oh my,” they’d say. “That’s the cutest baby I’ve ever seen.” Or words to that effect. These weren’t friends, mind you, but complete strangers we’d pass at the mall or grocery store.
It was something about her big eyes, tiny voice, interesting hair, and one-of-a-kind personality that did it, especially a bit later, when she was one or two. Madison would look at you with those eyes and then say something uniquely Madison-like in that little voice of hers, and it was all over. She’d hung the moon, it seemed.
Later, when she was a bit older, but no less cute, I was asked to come up with an Indian name that suited her. Dances with Wolves was a big movie of that era, so it had become trendy for a time (but perhaps politically incorrect) to decide what name was the right fit for those in your family.
“Full of life,” I said. For with Madison, no specific characteristic stood out. It was the overall package that made her who she was, something about her positive spirit and gung-ho approach to life. Madison was the opposite of melancholic. She was joyous, happy-go-lucky, fun.
During elementary school we noticed something else about her, something that played right into that full of life personality. Madison couldn’t stand it when stories had unhappy endings. She didn’t like it when people suffered. It just didn’t seem right.
I read to her a lot back then, and, as a film critic, she saw more than her fair share of movies. So I saw this reaction time after time. If a book or movie did not end “as it should,” it was a failure in her eyes. For life was good, not bad.
When cancer descended upon our family, Madison was only ten. I’m not exactly sure how hard it hit her, but it must have had some impact, to suddenly discover that her dad and her family were not infallible. Her world-view must have adjusted, however slightly.
But you wouldn’t know this by watching her. While others in the family might get down from time to time, Madison would have none of it. “You’re going to be fine,” she’d say while smiling, humming a happy tune.
Madison is one of those people who doesn’t dwell on the what-ifs when things are going wrong. Instead, she expects things to work out. I’m not sure if she adheres to a “power of positive thinking” belief-system, but in a practical way that’s who she is.
But then, year after year, it was bad news, worse news, awful news. Life has a funny way of surprising you like that. So you think that’s how it is, do you? someone seems to be asking behind the scenes. Well then, let’s see what you think about this! BAM!
During the last year, after they told me I had stage four cancer with little hope of survival, I’ve noticed a few more adjustments in Madison, now Maddye. She gives me long hugs, the kind that can change your mood from bad to good. She comes to me, not infrequently, and curls up on my lap, just as she did when she was that adorable big-eyed baby, and she simply holds on. She apologizes quicker than she might with a dad living under the seventy-year plan. And she tells me she loves me before going to bed each night.
One day, when I was feeling particularly awful, sick as a dog from chemo, Maddye surprised me by taking my hand and saying, “Dad. You don’t have to do this. If the medicine’s making you feel too sick, you can stop taking it. It’s okay.” Like those lousy movies from her childhood, she couldn’t stand to see me suffer.
“No, I’m fine,” I told her. “I want to be here with you for as long as I possibly can. So if that means being sick for a few days every other week, then that’s okay.” She thought about my answer for a few seconds and seemed satisfied.
It’s strange how a spontaneous conversation like that can become so big. Because a few days later, she tells me this story, right out of the blue.
“Hey Dad. I was in class today, and our teacher asked us this question,” she said. “Get this. She asked what we would do if someone in our family was extremely sick and going to die and wanted us to give him a pill that would make him die, so he wouldn’t have to suffer anymore.”
“Oh my gosh,” I said, or perhaps something a little stronger.
“I know,” Maddye said. “Awkward. So a bunch of the kids in my class are saying that they wouldn’t do it, that’s it’s wrong, that it’s not up to us to decide when someone should die, stuff like that.”
“So what’d you say?” I asked, not sure if I wanted to know.
“Well, I stayed quiet. But everyone kept giving the same answer. So I finally raised my hand and told them that I’d do it. I told them you’re very sick, dying from cancer, and how I’d told you that if the medicine and chemotherapy was making you too sick that you should stop doing it. And then I told them how you’d said it was worth it to keep taking the medicine and be sick sometimes if it helped you live longer.”
Meanwhile, as Maddye spoke, my heart was beating like a heavy metal band’s drums.
She continued: “So I said that if you asked me to give you a pill, then you must really be suffering, because you wouldn’t stop taking the medicine before when it was making you sick. So I told them if you asked me that I’d know that it was really bad and I’d give it to you.”
“Gosh Maddye, what did everyone say?” I asked, trying to maintain control.
“After I said that, everyone was completely quiet. No one said a word. But after class a bunch of them came up and told me they were sorry about my dad.”
There she was, happy-go-lucky Maddye, so beautiful, so full of life, having to think about making one of the hardest calls of all. She was so grown up now, a high school senior, heading off to college next year, and I was so proud of her.
A few days later, our family was thinking about going to see one of the holiday films. When LeAnn mentioned Marley and Me, I hesitated. “I don’t know,” I said. “Maddye might not like it. I heard a rumor that the ending is ’sad’.”
Funny. I was still trying to protect her from the imperfect world out there, that place that can be so big, so scary, so sad. Meanwhile, Maddye had moved beyond that dream into the real world, where someone, every day, has to decide whether or not to pull the plug.
LeAnn
I met my wife LeAnn while we were attending college at Oklahoma State University. She was a sophomore, and I was a junior. We had both signed up to be part of Varsity Review, which is a singing and dancing show, and her sorority (Chi Omega) was paired up with my fraternity (Delta Tau Delta). I was there to meet girls, and she was there, I assume, to meet guys, bond with girls in her house, and have fun.
I asked her out a couple of months later when the opportunity arose. She hesitated at first (her friends said I “wasn’t her type”), but she eventually agreed. Our first date was for coffee in March of 1985, almost twenty-four years ago. We began dating steadily a few months later. During my senior year, we were inseparable.
Upon completing my degree, I was accepted into law school at the University of Oklahoma. LeAnn still had one year to go. So I headed off to Norman, while she stayed behind in Stillwater. This “long-distance” relationship (a one hour and fifteen minute drive) was tough, but it only lasted one semester. I asked her to marry me during Christmas break, December, 1986, and, incredibly, she said yes.
LeAnn joined me in Norman after Christmas. She completed her degree by doing her student teaching at Norman High. That semester she lived in an apartment with our friends Polly and Shellie. We married in the summer, on July 25, 1987, and have lived in Norman ever since. I was twenty three years old at the time, and LeAnn was twenty-two.
We spent the remainder of our twenties like most other young marrieds do: getting used to married life; completing our education (I received my law degree in 1989, while LeAnn obtained her Master’s Degree in Mathematics at OU that same year, earning straight A’s); scrambling to find jobs; getting established in our community; and starting a family. Our daughter Maddye was born in 1991, and Ford was born three years later, in 1994.
As we hit our thirties, LeAnn and I were still living a fairly normal life. It was a crazy time, of course, as we were busy raising kids while balancing marriage, work, friendships, church, and our personal interests. I was working as a lawyer at various places and attempting to establish myself as a writer. LeAnn was multitasking, as wives/mothers tend to do. In addition to her mom responsibilities and volunteer duties, she taught night classes at several different colleges. And she worked for a time at a church, organizing women’s book studies.
But while we were in our middle thirties, during the hustle and bustle of life, cancer came and knocked on our door. I was thirty-seven years old. LeAnn was only thirty-six, which is way too young to be suddenly thrust into a new role, the wife of a seriously ill husband.
I have described those early years and how they affected me in my memoir, I Survived Cancer, but Never Won the Tour de France. But as with practically everyone who steps into the unenviable role of caretaker, LeAnn’s story is lesser known.
It would be nearly impossible for me to tell you that story. I’m too close to it, to be honest, and I’m pretty sure LeAnn wouldn’t want me to anyway. But I can tell you this: it’s as heroic as any story I know, much more so than mine.
I can give you a brief sketch of LeAnn, however. That is, I can tell you about some of her best qualities and a few of her primary interests, the stuff that helps make her the incredible person she is.
In addition to being easy on the eyes, LeAnn is smart. She’s hardworking and tough. She’s adventurous and fun. She’s generous and kind-hearted. She loves people deeply. She’s a devoted wife and a wonderful mom. She’s my best friend and has been for nearly a quarter of a century. I don’t know who or where I would be without her.
LeAnn enjoys book clubs, for she reads dozens of books each year. She’s genuinely interested in other cultures. She’s a certified scuba diver and loves to go diving in Mexico. She’s the Math Counts coach at her middle school, and her team is one of the best in the state. She’s also a runner, having completed her first half marathon last year.
And as for the cancer years, those years that have stretched from her mid-thirties to the age of forty-three, well, what can I say? She’s been severely tested, that’s for sure. No one steps into a marriage expecting to deal with the kinds of issues LeAnn has had to deal with at such a young age. In addition to all the craziness that comes with being a mother, teacher, friend, and human being with dreams of her own, LeAnn has had to drop everything in her life, time after time, in order to help me.
It’s a lonely, thankless job, being the “caretaker,” a job that’s so big and exhausting and overlooked that it’s nearly impossible to describe it in words. The best I can do is to give you a sense of it from a poem I wrote in 2007.
The Caretaker
If I told you how many needles
they’ve stuck in me
in the name of making me well
you’d probably never believe it.
If I told you of the drugs
I’ve ingested or the poisons
they’ve pumped through my veins,
you’d wonder if it was possible.
If I told you of the radiation
that had seeped through my body,
via x-rays, scans and “therapies,”
you’d call me a monster.
If I told you of the surgeries
I’ve endured and the scars I wear,
you might question God
or, more likely, your faith.
If I detailed the vomiting, the bills,
and how often I’ve been told,
“I’m sorry, it’s cancer,”
you’d call me a hopeless cause.
If I told you of the conversations
I’ve had with my wife, my kids,
my parents, family and friends,
you’d walk away.
If I told you these things,
if I counted them all up
and then disclosed the final tally
you’d give me up
because life wouldn’t make sense anymore.
So I’ll keep all the counting to myself,
because I need you to hang in there
with me, playing that major
or minor role in the screenplay.
But if you wanted to know more,
if you somehow convinced me
to reveal the things I’ve seen,
to divulge those horrible numbers,
and then if you needed confirmation,
you could fact-check with my wife,
who witnessed and endured
these same things.
She brought the cold rags
for my forehead, the pans
to throw up in, the pills
I was to take with my meals.
She bandaged my wounds,
emptied my drains,
made impossible phone calls
and arrangements for the kids.
She cried over the bills,
set up impractical payment plans,
drove me to my appointments
and slept by my hospital bed.
Ask her. She’ll tell you.
She was the one who remained
ever-so-patient when people asked,
“So how’s Jim?”
Family
Two years ago my memoir, I Survived Cancer, but Never Won the Tour de France, was first published.
In the book, which is kind of a common man’s introduction/guide to the absolute craziness that is cancer, I included poems between each chapter. The poems were written during the thick of the battle. One of those poems is a favorite of mine, but it is also one of my most difficult. During the few times I have tried to read it out loud to audiences, I have choked up every time.
Anyway, for what it’s worth, here it is.
family
four will be
three
three will be
two
two will be
one
three bury
one
two bury
two
one buries
three
cruel world where
four
can’t just be
four
and always be
four
That’s a pretty painful poem, because almost all of us have experienced it in some way, and all of us will experience it eventually. That is, the loss of someone in our immediate family. My family, growing up, consisted of six of us: dad, mom, my three sisters, and me. We lost my sister Karyn to a car accident at the age of twenty. So six has become five. If I leave, five will become four.
My other family (the one in which I’m the husband and father) consists of four people: my wife LeAnn, my seventeen year old daughter Maddye, and my fourteen year old son Ford. I wrote the poem “family” while thinking of them, along with my own mortality and the loss of my sister.
It is sad when one of us has to leave. But it may be even sadder for those left behind, especially for that last person, the one who buries all the rest of his or her family.
Although this “Life is Real” series has primarily been about me up to this point, I want you to know that there are three others who are just as much a part of the story as I am. They are, in fact, up to their necks in it. Those people are, of course, LeAnn, Maddye, and Ford. They are my inner circle, the three people I love the most in the world.
Over the next week, I will be writing a tribute to each of them. I want to show you a glimpse of the incredible people that they are. And I want you to know that they too are doing their best to find hope and meaning and guidance during these difficult days.
Walking the Dog
So yesterday was the big day: the day The Oklahoman formally launched its stories about my family and me in the newspaper.
Yes, we’ve been blogging in this “Life is Real” series for well over a month now, and many people started reading weeks ago. But the internet’s not for everyone, so yesterday was officially the “big day.” For on that day the story was due to appear on the front cover of the paper, and many thousands of readers would decide for the first time whether or not my story was something they were interested in.
You might be wondering how that made me feel. How does it feel to have a third party (Ken Raymond) reflect on your life after many weeks of careful observation and then report his thoughts to a great many others who don’t know you from Adam?
Well, I felt a little queasy, to be honest. Oh, I wasn’t nervous about how the story would be told or received, mind you-that was out of my hand(s). I would instead liken it to those college days when grades are due to be released. The work was done. The grades were due and beyond anyone’s control. And although you think everything will probably turn out fine, sometimes it’s just a little easier not to think about it.
Listen. I believe in what we’re doing here, and I know Ken’s a seasoned writer who’s more than up to the task. Nevertheless, it’s a little intimidating to read what an unbiased third party thinks about your life. Plus, even after all these years of dealing with and writing about cancer, I still find it difficult, at times, to look at what the disease has reduced me to.
Fortunately, I didn’t have to face the story right away. I had a poetry reading in Tulsa on Saturday, so my wife and I spent the night there at the Warren Doubletree. I awoke on Sunday morning to a hotel full of Tulsa Worlds and USA Todays, but virtually free of other newspapers. Plus, my computer was back home in Norman, so I had no ability to read the story online.
I suppose we could’ve found an Oklahoman in Tulsa if we’d really wanted. But instead of heading to the nearest 7-Eleven, LeAnn and I drove to the Blue Dome Diner for a fabulous breakfast. (The French toast rocks, by the way.) After that, we carefully avoided all newspaper-selling stores and drove home.
We arrived in Norman sometime after one p.m., and within minutes the newspaper was staring us in the face. I picked it up, flipped through the photos, and then went to the back bedroom for a nap without reading a word. I awoke an hour later. Rested, I again fought off the urge to read what had been written about me and went to walk the dog.
As my golden retriever Gracie could tell you (if she wasn’t a dog), I’m not the best dog-owner in the world, at least when it comes to taking her out on walks. A couple of years ago, I was much better, walking three miles a day, four days a week, with Gracie and my friend Dave. But I fell out of the habit, and the latest cancer diagnosis made returning to such walks difficult. My fatigue always seemed to take precedence over Gracie’s need for a walk, despite how much I love her and despite all the guilt I’ve recently experienced after watching Marley and Me.
Poor dog, even she was suffering as a result of my cancer.
Anyway, you know I’m procrastinating about something when I suddenly announce that I’m taking Gracie out for a walk. But walk we did.
It was a beautiful, glorious day, especially for January. Fifty-five degrees, sunny, no wind. Gracie and I walked over to a nearby park. There, I took off her leash, and she ran back and forth in the happy-go-lucky way dogs do, as if we had no problems, as if we owned the world. I breathed in the crisp air and considered my surroundings. Some children were playing on the swings nearby. It hadn’t been too long ago when my own kids were out there on the playground. Time passes so fast.
After awhile, I called Gracie back over and put her leash back on. I patted her on the head and told her what a great dog she is. I told I was lucky to have her, that I didn’t know how a person made it through cancer without a dog like her, always happy, always ready and willing to give as much time as was needed. She licked my hand in response, and I told her how much I love her.
Then we turned and headed back home. There was a newspaper story waiting. It was time to return to the real world.
Hair Prayer
Here’s a poem I wrote some time ago that goes pretty well with my last blog entry, ”The Chess Match.”
Hair Prayer
Hair, my hair,
it used to grow
most everywhere,
like there, and there!
But now, my hair,
is something that
is fairly rare.
Alas, despair!
Ah yes, my hair,
is disappearing
in the air.
I swear. I swear!
My share of hair
is best described
as thin and spare
without the flair.
And worse, new hair
is popping up
where once was bare
and that’s not fair!
And so my prayer
if you don’t mind,
as if you care,
is that the hair
this clown must wear
will somehow take
my heartfelt dare
and then repair
and that whene’er
I walk about
that you won’t stare
at my bad hair.
