Last Week in Houston
The latest trip to Houston was much like the one I had three months ago. Tests on day one. Rest on day two. Then a tense time of visiting with the doctor on day three.
I flew out Monday morning. Took the shuttle to M.D. Anderson’s Mayes Clinic and had blood work, followed by a chest x-ray. After that, I had to down two bottles of banana flavored barium before my CT scan. Disgusting. Meanwhile, I finished the book I’ve been reading, a memoir called The Glass Castle.
Back in the CT scan room, I had an IV put in, before taking on the always fun task of changing into the CT scan scrubs, not the easiest thing to do when you have one arm. The pants, you see, have to be tied at the waist so they don’t fall down while walking to the scan room. But I’m not particularly good at tying things. Oh, I can git-r-done, eventually, using a combination of hand, teeth, and awkward positions, but it takes forever and looks idiotic.
Then it was heading into the scan room, where I had the honor of meeting the woman who was getting ready to insert a hose up my butt. Awkward.
The scans only took about ten to fifteen minutes. Then it was back to the dressing area, where the IV was taken out and I put my civilian clothes back on.
A twenty dollar cab ride to my hotel followed. Upon arriving in my room, I rested and recovered from the barium, iodine contrast, and violation of my “region.” My appetite returned at some point, and I walked over to a nearby shopping area, where I bought a new journal, poetry book, and some take out sushi. I returned to my room, ate, and worked on a few poems.
LeAnn joined me on Tuesday, arriving at about ten a.m. in a rental car. We ate a late breakfast, then relaxed a bit at the hotel pool. I sat in the shade, of course, and wrote poetry. That’s what I do at pools. After that it was movie time and dinner at a cool restaurant.
The next day, we met with Dr. Kopetz, perhaps the nicest guy in the world, although the competition is tough between him and my other doctor, Dr. Curley. Dr. Kopetz gave us the good news, that the tumors hadn’t grown in the last three months, that he was “encouraged” by my scans, and that they were trying to come up with a plan for whenever this chemo regimen eventually stops being effective.
We flew home later that day and reentered the real world.
The Current Plan – Revised & Revised Again
Nothing’s ever easy, it seems.
My current plan, as described in my last post, was to fly to Houston next Monday, get tests done, then fly out that same day and have them call me with the results. Well, M.D. Anderson said no to that plan. They don’t do CT scans without a follow-up visit with an oncologist. I asked for an exception. After all, I’ve been going there for eight years. But they said it was hospital policy.
I’m not griping. As a lawyer, I’m sure it’s some legal policy, or perhaps a business decision made long ago. But regardless, it complicates my already already overly complicated life. For I’m having a shaky week due to chemo. Then, once I recover, it will be three days in Houston for tests and getting “the news.” Then it’s back home with a strong possibility of chemo the next week.
That’s almost three weeks out of commission!
Meanwhile, it’s crunch time around here. My wife is doing testing for her students at school. Maddye’s 18th birthday is this week, and we’ve also got prom and senioritis to maneuver around. Ford is playing at the Norman Music Festival, so there are practices all the time. And the kids have a lot of homework.
Anyway, MD Anderson agreed to move my tests to Tuesday, rather than Monday, making it two days away rather than three. But they gave me this news as I was having chemo, and I couldn’t speak to my wife about it until later on that night. By the time we’d discussed it, decided she would join me, and changed my flights, that Tuesday appointment slot was gone.
So it’s back to three days away. I’ll leave Monday and have tests. LeAnn will fly out on Tuesday. We’ll both see the doctor on Wednesday, then fly back.
Oh yeah, by the time I switched my flights back to Monday, I was outside the seven-day window. So the flight was going to cost another $100. But when I explained it all to Southwest Airlines, they honored my original ticket price.
Whew!
The Current Plan
Here’s the latest plan, revised time after time as I try to figure out how to prolong my days (and relationships and paycheck) for as long as possible while not chasing after a fictitious pot of gold at the end of some unreachable rainbow.
Tomorrow I will have chemo once again. God, it’s getting old, this relentless poison they’ve been dripping into me for a year and a half. I hate it so much, and yet I know I would already be dead without it.
After that I will recover for a couple of days, trying to eat and drink whenever possible without throwing up, attempting to walk here and there whenever I can summon up the strength.
I want to regain my strength, for on Saturday, April 18, my daughter Maddye turns 18! It’s crazy that it has been eighteen years since that unbelievable day when she was delivered at Baptist Hospital. (During the afternoon of that same day, I’ll also be doing a poetry reading with five poet friends at the Edmond Library. If you’ve never heard me read, please come. I’d love to see you.)
Two days later, I’ll fly to Houston to have new tests done at M.D. Anderson. It has been three months, incredibly, since that time shown on the video when LeAnn and I went down south and learned that my cancer had stabilized. I hope to get that same news again (and would love to hear something even better), although bad news is quite possible too. Either way, I’m not hanging around this time to find out, there’s simply too much going on for a three day trip to Texas. I’ll take the news by telephone and hope to be pleasantly surprised once more.
Following that, we’ll just have to wait and see…
Close Calls
Sometimes, when the reality of my diagnosis hits me hard, I can’t help but feeling gypped out of time that I “deserve.”
But then those dark thoughts are tempered by others. Like the miracle that any of us are ever born in the first place. So many things have to be just right for a birth to occur. It’s the longest of long shots, really, a matter of timing, chance, physics, biology, spontaneous events, random decisions, and about a gazillion other things.
And then to think that such a long shot had to occur to every single person in our ancestry in order for you or I to be sitting here is a bit mind boggling.
Here’s another thought that hits me when I begin to feel cheated out of time: not too long ago, only a few hundred years back, no one expected to live as long as I have. To make it to forty was incredible. Indeed, there are places on this earth where famine and disease are prevalent and where folks would take a 45 year lifespan in a heartbeat. That would be a very good deal.
And then, I can’t help but think of those I’ve known who checked out before the age of 45. Tom T. Charley. Karyn. Donya. Marti. Sherrie. Their names float around in memories, as if waiting for someone to recall their lives.
But the main reason I have for knowing that time has not ripped me off is the memory of close calls I’ve had in my life. For the truth is, I’m living on borrowed time. I’m lucky to be here at all.
On two separate occasions, when I was too little to know any better, I ingested an alarming amount of medicine that tasted a bit too much like candy. (I guess I had a sweet tooth.) As a result my parents had to rush me to the emergency room twice to have my stomach pumped.
Another time my bed caught on fire after I’d brought a lamp under the blankets to read. The book was boring, I guess, so I fell asleep. My mom saved me that time.
Another time I got hit by a car while riding my bike to elementary school. And I’ve already told the story about how I used to climb to the very top of the tallest tree in my neighborhood. Had the branch snapped, it would’ve been all over.
As a teenager, I came up with this crazy idea to attempt to body surf through a flooded drain. My friends would hold my hands and lower me down to the drain, which was actually under the creek’s water. When I squeezed their hands, they would let go, and the force of the water would blast me through the drain to the other side, where other friends were waiting to grab me before I was thrust upon rocks further down the creek.
In high school and college, there were two knife incidents. The first occurred at a high school party when someone who was apparently stoned tried to kill me after I’d replaced his Lynyrd Skynyrd record with the Saturday Night Fever soundtrack as a joke. He didn’t think it was funny and was soon chasing me with a weapon. Friends rushed in and saved me. A few years later, in college, my future brother-in-law tried to break up a domestic dispute outside some apartments as we were walking toward Eskimo Joes. The angry boyfriend pulled a knife and had my future in-law cornered. I jumped on the guy from behind, holding his weapon-bearing hand, while somehow sucessfully talking him out of the murder.
Whew!
There were three car incidents. The first happened in high school when I was driving too fast to negotiate a turn, ran up a curb, and just missed a tree. The second time, a friend was driving and wanted to demonstrate how fast his car would go. At 115, the road veered ever so slightly, and I could feel the car beginning to slide. It somehow didn’t, but I knew we’d had a close call when I saw that my friend’s face was white as a ghost.
The third happened when a friend was driving a group of young marrieds home from a gathering in Norman. He was turning west onto Highway 9 (a notoriously dangerous two lane stretch) from a residential area, out in the Lake Thunderbird area. There were no cars coming from the east, i.e., our left, so he should’ve been free to turn into the highway’s westbound lane. But he hadn’t thought to look right, where an eastbound car was passing another. Thankfully, there was a bit of shoulder he’d turned onto, and we had the nearest of near catastrophic misses. (I won’t get into the boating incident we had with him a few years later.)
So you see, I’ve cheated death over and over again. I’m lucky to be here at all. Each day is truly a miracle and a gift.
Don’t Take My Grief Away From Me
After my sister Karyn died in a car accident in April of 1992, I found myself in a dark place like none other I had ever known. Hardly an hour passed when my little sister wasn’t on my mind. I was down and depressed. I teared up every day, sometimes sobbing for long stretches of time. I had motivation problems. Sleep was no longer a guarantee.
This lasted weeks upon weeks, and I didn’t know what to do about it.
At some point I recalled that a fellow named Doug Manning had spoken at our church about this issue. Manning used to be a pastor, but now he held himself out as a “grief specialist.” In fact, over the years, he had become a nationally recognized expert in this strange field.
I recalled that Manning had spoken on the subject of grief one Sunday, long before Karyn died. I’d forgotten a good chunk of what he’d said I’m afraid, as I had no grieving experience affecting me at the time. But I did recall this: Doug Manning was real; he was compassionate; he was funny (and that means a lot to me); and he had written a book on the subject of grieving. Being a big believer in the power of books, I hoped Manning might be able to help me out of my funk.
That is how I came to purchase and then read Don’t Take My Grief Away From Me in the summer of 1992. And boy am I glad I did.
Some books speak to us because the author seems to be reading our souls. Others tell a great story that thrills us to no end. Others are beautifully written by someone with a unique voice. Others remind us of some person, place, or event we hold near to our hearts.
Other books come at the exact right time, hitting upon an important subject just when we needed it most. That was what happened when I read Don’t Take My Grief Away From Me. The book was speaking my language, addressing issues that had been sloshing around in my mind and driving me crazy. I didn’t know what was “normal” when one was grieving. I knew nothing about the stages of grief. I wasn’t prepared for the cruel things people would say in an attempt to help. And I certainly didn’t know about how others would expect me to “get over it” way before I was ready.
Manning’s book addresses these issues and many others, based upon his many years of assisting grieving families. It is a short read, approximately 125 pages, but it is packed with valuable insights and information.
Over the years I have sent copies of the book to various people who were dealing with grief. You never know if they read the book and found it as helpful as I did. But that’s not the point, of course.
Whenever tragedy strikes someone close to us, we often feel powerless and are unsure about how we could possibly help. A book is a great gift in these situations. Instead of saying, “please let me know if there’s anything I can do,” you simply hand them the book and say “I’ve been thinking about you.”
You can obtain a copy of Don’t Take My Grief Away From Me and other books by Doug Manning at www.insightbooks.com .
Shaved! (photo by John Clanton)
The Jim Chastain Preservation Society
One of the more difficult (and panic-inducing) aspects of dealing with terminal illness, at least for me, is the desire to preserve the stories from my life. The clock is ticking, as they say, so I know that if I don’t write down this story or that from my past those stories will essentially die with me.
We preserve the memories and stories in our lives in various ways. Photography. Videos. Scrap-booking. Word of mouth. And some do it through writing.
This desire, to tell and preserve stories, has been a driving force in my life for many years. When I was a kid, I used to pretend my life was a movie and the whole world was watching. That may sound self-centered, but as I recall it was just a kid’s game of make believe. To keep the “movie” from being too boring, I had to crank up the action. That is, I tried to incorporate as much conflict, adventure and humor into my daily routine as possible. (No wonder I’ve had such a crazy life.)
Perhaps it’s not surprising, then, that I became infatuated with books and movies as I grew older, for the power of story in the great novels and films is hard to deny. I read dozens of books each year as a kid, and I watched hundreds of movies. I’ve probably read The Chronicles of Narnia seven or eight times. I recall how thrilled I was when HBO was hooked up to my bedroom in high school. In college I took a job at a video store, and my nickname became “Mr. Movie.” Later, I began reviewing films for several newspapers, and I even wrote a couple of screenplays. Several true life stories from my childhood made their way into those scripts and are thus preserved forever, at least if anyone ever buys them and turns them into a film.
The desire to tell and preserve stories also played a big part in my interest in poetry, for poetry is a great vehicle for storytelling. Poems can be purely fictional, but they can also be entirely true. But perhaps most often, they are a blend of fiction and nonfiction, using both to reach a larger underlying truth.
When writing poems, I love to insert a memory or two from my life, for in so doing I know those memories will last a bit longer than I will. And during poetry readings, I enjoy telling the stories behind the poems whenever I can, i.e., how a series of seemingly random events led to the creation of something brand new.
The desire to tell and preserve stories was also the driving force behind my cancer memoir, I Survived Cancer But Never Won the Tour de France. Some absolutely crazy things happened to me during my initial five-year battle with cancer, and I wanted to share them. These were stories that went beyond the standard “here’s what happened when Jim had cancer.” They were hilarious, outrageous, and sad, all rolled up together. I wanted to preserve those stories and thereby show what living with cancer is really like. And in telling those stories, I was also able to insert numerous other memories from my life along the way.
Of course now that I’m “dying,” this desire to tell and preserve the stories from my life is stronger than ever. Not all of them, of course, for I’m surely not that interesting. But I’d love for the best ones to survive. Besides, I want my kids to remember me. I want my friends and family to recall the good ole days and the person I once was. And like so many others, I want the world to remember, at least for a little while, that I was here.
And so, after my grim diagnosis, I completed a list of 500 of the strongest memories from my life. I’m not exactly sure what I’m going to do with that list, but I’m going to try to preserve as many of those stories as I can, through various means.
I’m working diligently on a new memoir, I Survived an Amputation But Never Became the Bionic Man. Like my first book, it will combine essays and poetry in an attempt to capture some truly crazy moments from the handicapped portion of my life. If I finish it, I’ll be able to cross those memories off the list.
I’m also working on a new poetry book, which I hope to have finished by the end of the summer. I’m going through all my poems, and those that preserve memories will be given special attention. Plus, I’m writing new poems all the time.
I hope to capture other stories from my past on video or simply by sharing them with others through email or a phone call. (I’ve already posted some on facebook and my website, under the label “16 random facts about Jim”.)
But beyond all those hopes and dreams, I am fortunate to have this Life is Real series, which has enabled me to capture and preserve so many stories, thoughts and memories from my life and to reconnect with dozens of people I have known. So many have written me notes about a certain event from our past, some escapade we shared, some trouble we found ourselves in, some laughs we shared. Some of those memories even I had forgotten, but now they are preserved once more.
Perhaps someday someone will turn these essays into a book. Perhaps not. But either way, I’d like to think that at least some of the stories I’ve shared have been preserved, at least for awhile, through laughter, tears, new discoveries, rekindled memories, and the reminder to live now while you can.
Poetry Month
April is poetry month.
For many of you, the word poetry has negative connotations. You may recall that teacher in high school who made you study the romantic poets, write a paper over Whitman’s Leaves of Grass, decipher Shakespeare, or write your own sonnet. Or you may have been to a poetry reading that was somewhat miserable. Or you may have read some contemporary poetry in a magazine that was difficult or, well, incomprehensible.
I feel your pain. But I also want to encourage you to give poetry another chance. For poetry, like anything worthwhile, takes practice. You don’t dive right into Shakespeare, just like you don’t dive into the deep end when learning to swim.
I started my journey with Dr. Seuss and Shel Silverstein. You couldn’t have two greater teachers. Before long, it was Robert Frost, Emily Dickinson, Poe. As far as contemporary poets go, you can’t go wrong by starting off with Billy Collins or Ted Kooser. Another route is by reading poetic songwriters like Bob Dylan or Tom Waits.
Poetry readings are often hard to take, but sometimes they soar. You’ve just got to find the right one. By the same token, contemporary poetry is often deliberately difficult, but if you find a poet you love, poetry can be a tried and true friend.
I often speak about how similar poetry is to prayer, at least to me. The Psalms are ancient poem/songs that range from praise to utter despair. When you write a poem, you’re often getting down to the nitty gritty, what life’s really all about, where it hurts, how it thrills. Prayer is like that too.
But I especially love how poems can tell stories and preserve memories. In this series, I’ve often mentioned how I try to make at least one memory a day–how I feel like I’ve failed when an entire day has gone by without one memorable thing happening.
But thanks to poetry, I’ve been able to preserve some memories that I would have surely forgotten otherwise. Sometimes they’re funny, sometimes they’re sad. Sometimes they’re beautiful, sometimes they’re bad.
Whoops.
Here’s one from my first poetry book. The story behind the poem is that my poetry buddy Nathan Brown and I were heading to the Woody Guthrie Folk Festival in Okemah a couple years ago. We were taking the scenic route and had taken a wrong turn, somehow. Nathan, who was driving, turned the car around, and then we saw a hitchhiker.
Upon seeing him, I immediately called out, “I’ve got the poem!” (When two poets are together and see something odd, you’ve got to be the first one to call out and claim creative ownership.)
The result was this poem, which, in addition to preserving a funny memory, has become one of my most popular poems at readings.
Note to an Oklahoma Hitchhiker
For starters, you might
try putting on a shirt.
No sane person’s gonna let
some bare-chested, beer
bellied, man-boobed Bubba
into their brand new SUV.
Besides, bare feet are
pretty much a deal killer
when you’re out here
looking for a ride,
no questions asked.
And while we’re at it,
that gallon of milk you were
chugging out there on I-40
in the 100 degree heat
was so peculiar and troubling
that I’ve placed you
at the bottom of my list
of potential hitchhikers
I’d ever pick up if I were a
“pick up hitchhiker” kind
of guy. Water or Gatorade?
No problemo. But milk?
That’s just wrong.
Tag, You’re It!
So it was chemo yesterday, and I’m in bed right now recuperating.
My brain is in a fog as I write. It’s kind of like having a hangover, I hear, or going without sleep for two days. The words are there, somewhere, but it takes a little longer to locate them and put them into what we’ve come to know as sentences.
Anyway, since I am down today, why don’t you guys take over?
What’s going on in your world?
What do you think about this series? Too sad? Too funny? Just right?
Is it helpful or completely pointless?
Are you following from somewhere far, far away?
Any great stories to share from our past?
Even if you’re not “creative” or a writer, just drop a quick note. Something fun. Something interesting. Something you’ve been meaning to say, but haven’t yet. If those are too personal, you can always send them to my website, www.jimchastain.com .
So come on, let’s see how many people are reading out there. It’ll be fun.
