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.
A Nagging Cough
I woke up a few days ago with a bit of a cough, a scratchy throat, and some congestion.
Perhaps this was the beginnings of a summer cold, I thought, or the aftermath of a fun weekend with friends. I wasn’t sure. Or perhaps it had something to do with chemo the next day–you know, those anticipatory symptoms I’ve previously described.
But these weren’t normal chemo symptoms. Oh, to be sure, my voice comes and goes at times, and I do have a coughing day here and there. But not typically.
Later in the day, I was running a slight fever. That was odd, because I’m usually a degree or so under.
As chemo day arrived, all the symptoms were gone, except the cough, which had grown worse. That was bad because they won’t let you do chemo when you’re sick. But my numbers were all normal, so, yea, I received the poisons once more, for the 37th time!
The cough seemed to bother some of my chemo neighbors though. I kept waking up the woman beside me, a pancreatic cancer sufferer, and the wife of another patient kept giving me this look that said, “I hope you don’t have the swine flu!”
Cough suppressants helped a little, but not much. By nightfall, back at home, I was coughing consistently, once or twice every minute. Today, things are not better, but worse.
This freaks me out a bit, to tell you the truth, because I have developed lung cancer this year. Indeed, during my last visit to the doctor, I was informed that the lesions in my lungs had grown slightly during the last three month stretch, despite receiving five chemo treatments.
“The liver’s what’s going to get you,” a doctor once advised. When asked what dying of liver cancer is typically like, I was told that it wasn’t the worst way to go, at least as far as cancer is concerned. Patients usually get weaker and weaker, sleep more and more, then eventually slip into a coma.
I’ve never asked, but from my life’s experiences, I get the sense that death by lung cancer isn’t very pretty. And this is probably even more true for someone like me who has claustrophobic tendencies. (By the way, if you have experience in this death-by-lung-cancer area, I really don’t want to know about it.)
It’s ironic. When I go the see the doctors about my latest scans, I sometimes worry that the liver cancer will have improved while the lung cancer will have gotten much worse. For if anything, I don’t want to be suddenly told, “The lungs are what’s going to get you.”
It’s like going to the race track and worrying that your horse, which is in the lead, has miscalculated the end of the race and will soon be passed by the underdog.
Or something paranoid like that.
I Read the News Today, Oh Boy!
We opened our newspapers this week (or, perhaps, turned on the TV to the morning or evening news) and were greeted by another awful story. A man named George Sodini entered a Pittsburgh aerobics class, took out a gun and began randomly firing upon a group of defenseless women, none of whom he apparently knew. He killed three before turning the gun on himself.
I find stories like this, well, disturbing and tragic of course. But I also find them ironic. For here is a healthy man of 48 who decided that life was not worth it, that murder and suicide was the answer. Meanwhile, my health is completely whacked out, and I’m searching for anything that will increase my numbered days.
Sodini’s tragic and troubled story is not about me in any way, shape or form. But I can’t help but wonder about that gulf between our two lives, how he came to such a desperate point while I have not. What causes one house to stand and the other to fall?
It seems like the best answer to that question is loneliness, for Sodini’s chilling blog and videos have described an isolated life. Sodini hadn’t had a meaningful dating relationship in decades. And friends did not play a significant role in his life either, as far as I can tell. On most nights, he apparently came home to an empty house and spent the night alone.
I don’t want to judge George Sodini. Others will do that, rather relentlessly I’m afraid. And I’m sure additional frightening facts will come out and help explain some of the reasons why he acted as he did. He was quite possibly mentally ill. To be sure, not all lonely people take such drastic measures.
But I do want to want to formulate a healthy response to that story by being thankful for the relationships in my life and for all those people that have helped me keep my head on my shoulders. For terminal cancer is a lonely road, and I don’t know where I’d be without family and friends.
First and foremost, I’m thankful for LeAnn, the best wife in the world (or at least one who’s tied with many others for first place). With someone like LeAnn at your side, almost anyone could find their way through.
I’m also thankful for my family, extended family, and in-laws. They’re always trying to find some way to make life a bit easier.
And then I’m thankful for my great group of friends. For if there’s one thing I can point to in my life that has made the biggest difference whenever times have gotten tough, it has been my friends.
“Make new friends, but keep the old,” advises an old song. “One is silver and the other’s gold.”
I’ve always taken that advice quite seriously. In high school, I surrounded myself with as many friends as possible. In college, I formed new friendships, first in the dorms, then in my fraternity, and then with many others, including of course LeAnn. After that it was law school friends, neighbors, friends in my church and community, and work friends. Lately it’s been writing friends, poets, and people who have read something I’ve written.
“Never trade away a friend,” I tell my kids. “Life is hard and you’re going to need as many as you can get.” I’m not sure they fully understand how earnest I am when I say that, how strongly I believe that friends are the key to happiness. But I keep saying it anyway.
My family has had a couple of hard years, and this summer has been particularly difficult. But our friends have rallied and helped us stay on course. In June some friends threw a party for me at the fabulous home of a high school friend, who now lives in OKC. It was a great night of eating, drinking, catching up, and renewing some old relationships that had drifted a bit over the years.
The next month another group of friends held a similar event, dubbed Jimfest, in Bartlesville. Again, it was a great evening of visiting and seeing friends, many of whom I hadn’t seen in quite a while. We laughed, told stories, sang, and had some meaningful exchanges. What a great memory!
And just last night I gathered with some of my closest college buddies and their families for a swim party at our house. One friend flew in from California. Another was in from Singapore. Others drove from Texas and Kansas. Some traveled fewer miles, from Tulsa, Edmond, Stillwater, and Norman.
As they left, I found myself getting choked up, for my health is bad and you just never know. I wanted to tell them so many things, about they’ve played such a big role in making this a wonderful life, despite the challenges we face. About how much I love and appreciate them. About how proud I am to have known them and to have had them in my life.
But I couldn’t. It was too hard, and I’m a crybaby.
So I’m telling them now.
All About Eyebrows
I’ve been thinking a lot about eyebrows lately.
Yeah, I know. Too much time on my hand.
I guess girls think about eyebrows a lot more than I ever have. They’re always messing with ‘em, it seems. Plucking ‘em, smearing cream on, laser removal.
But eyebrows don’t usually don’t make it high up on a guy’s list of concerns. Nose hair? Yes. Back Hair? Oh yeah. But eyebrows? So long as we don’t have a unibrow, they are rather easily forgotten.
My only real run-in with eyebrows over the first 44 years of my life concerned a few wild hairs that grow in mine. And boy do I mean wild.
One of these hairs in my right eyebrow is crazy long. About every couple of months from the age of 15 to 44, I’d notice it was on a personal journey again, snaking its disgusting way up my forehead or trying to say hello to an eyelash. I’d grab the durn thing between thumb and forefinger and yank it out, causing tears to burst forth from my eyes every time. That sucker was so strong that it might take me four or five tries to have a successful extraction.
“Don’t yank your eyebrows out like that,” Mom would say. “It causes brain damage.”
My left eyebrow wasn’t home to “the King,” but it did have several copycats that also tried to express themselves every few months. My right eyebrow had one of these pretenders too.
God, how I hated those four or five wild hairs. I couldn’t get rid of them. Like that obnoxious rattle coming from beneath one’s car, they followed me everywhere. And plucking them only seemed to make them worse, stronger, thicker. I eventually had no choice but to switch to trimming, knowing I’d been defeated.
At the age of 45, after weeks and weeks of chemo, the hairs on my body began weakening. The thinnest hairs, like those on my fingers and toes, were the first to say adios. Next it was the hair on my arms and legs. Then, my underarm hairs hit the road. Eventually, those thick curls on my head couldn’t take it anymore. They turned a dead grayish color then fell to the floor.
Now, only the strongest hairs have survived. My beard. Some of the tougher strands on my head and chest. Those troubling ear hairs, which seem to have an odd sense of humor.
And, yes, those four or five “wild hairs” in my eyebrows are still with me, showing no sign of weakening. They’ve joined a few never-say-die survivors to form two jagged brows that look more like a row of rooftops than eye decor.
The good thing is that those suckers are still so long I can do a comb-over and shape them into whatever form of eyebrow I desire.
A Further Word about the Beads
Even though my latest CT scan, conducted at MD Anderson Cancer Center in Houston on July 21, indicated that the sirtex procedure (the radioactive beads or fibers) I had five weeks earlier in Bartlesville had not reduced the tumors in my liver to any significant degree, that’s not necessarily the final verdict.
My doctor in Houston indicated there could still be some positive results, although he expected any such results would likely be minimal at this point. And my doctor in Bartlesville says the common protocol is to do a PET scan at twelve weeks in order to determine what the final results are.
Right now, I’m six weeks out, which is only halfway there. So I guess we’ll have to wait awhile longer, hoping the next scans are a little more encouraging.
That being said, I’m in bed right now, recuperating from my 36th chemotherapy session this last Monday. (That’s right, 36th!) My nausea has been good, but the drugs have really sapped my strength. And for right now, continued chemo seems to be the only option I have.
Please Keep Reading!
While the Oklahoman has decided not to continue running the “Life is Real” series in its newspaper edition anymore (except perhaps to run one of my blog entries from time to time), they are continuing the online version. So I hope you will stick with me and keep reading the blog entries online or on my own website, where I’ll be posting them too.
I know I haven’t been posting as much lately, but that’s been due in large part to a busy summer schedule and the medical procedures I had in the last month, which completely knocked the wind out of my sails. Plus, I’ve had a lot of personal issues to work through.
But now that I’m feeling a little bit better and know where things stand with the paper, I’m going to do my best to post regularly, three to four times a week. I still feel as though I have a lot to say. And by the steady stream of letters I receive to the blog, my website, and via email, I believe that a fair number of people have been listening.
So please keep reading! Please respond to those blog entries that connect with you in some way. Share your own stories too. They add depth and meaning and perspective to my posts. And please share the entries with your friends, at least those friends who are open to them.
The Drive Home
It’s a beautiful day in July, and I’m driving home on I-35, just north of the Oklahoma/Texas border. The sun will set in an hour or so, but the summer sky is already preparing for an incredible sunset, as the remnants of rain clouds are setting up shop on the Western horizon.
My fifteen year old son Ford is driving with me. We’ve spent the last four days together with my wife LeAnn in Houston. There, I had my quarterly and thoroughly nerve-wracking medical checkup at M.D. Anderson Cancer Center. We’ve received “the news” from my doctors, and now we’re headed for home, after putting LeAnn on a plane to Denver. She has a conference there and will join us in Norman in a few days.
Ford has been a pretty good sport about this trip and the inconvenience it has put on his summer vacation. He understands that the sorry state of my health takes precedence, at times, over almost everything, even friends and Frisbee golf. He has come to learn over the last eight years that Houston is regular part of our lives, like good books and breakfast cereal.
Ford’s sitting in the passenger’s seat now and picking out songs for us to listen to on the car stereo, which is plugged into his iPod. He’s good at this. For the most part, we like the same type of music, and he knows how to find a song to match our mood. He makes his choice, cranks up the volume, and we sing out loud together.
It doesn’t get much better than this. A gorgeous sunset. Wonderful music. And a father and son driving the open road, singing, doing their best to harmonize.
Fortunately, Ford doesn’t see the tears welling up in my eyes. Thankfully, he doesn’t know how sad I am right now. Happy, yes, for this money-can’t-buy father and son moment. But sad too. Woefully sad. For the news in Houston was not good, and my future seems cloudier now than ever.
How many times have I been to this place, where a doctor steps into a small waiting room and delivers devastating news? At least a dozen, I’d venture to guess.
Let’s see… there was that time when a doctor told me the pea-sized bump on my arm was not nothing–my previous diagnosis–but instead “worrisome.” Then there was the time they confirmed it was actually a very rare and aggressive form of cancer that would require surgery and radiation.
That’s twice.
After that there was the time when they told me that cancer had returned in my arm and that the surgery and radiation I had recently endured had been unsuccessful. One year later, after another surgery and radiation procedure, I received the same bad news again. And then I hit the trifecta the next year, when they told me that cancer had wrapped around my nerve and that it was time to say goodbye to my arm.
That’s five times, if I’m counting right.
Three years later, a doctor walked in and told me my cancer had spread to my liver and lungs and that I had little time left. A week later he revised that diagnosis. This was actually a whole new type of cancer that had originated in my colon before spreading to my liver, but not my lungs. There were more options available, but it was still terminal.
That’s seven.
After chemotherapy commenced, I was given the joyous news that treatments had obliterated all the tumors in my liver. However, a couple of weeks later, I was informed this was not the case at all, that the tumors were alive and well, thank-you. Tests then revealed a certain acne causing drug was very promising for my situation. But after months of treatments, I was told it had not really helped me, but the acne part had worked.
That’s nine.
We then installed a titanium pump in my stomach in order to direct higher doses of chemo into my liver. This was a long-shot, but most people who did the treatment saw at least some positive results. I didn’t. Instead, the liver lesions stayed the same, and now there did seem to be growth in my lungs.
Ten. Eleven.
Last month, a new possibility emerged. Injecting radioactive beads into my liver through an artery in the groin. After thirty days, we would hopefully see marked reduction of the liver tumors, possibly even complete destruction.
Which brings us to this morning. That’s when my doctor entered the tiny waiting room and informed me that the radiation procedure I had endured had had little or no effect on the cancer in my liver. However, the tumors in my lungs had grown slightly while I was off of chemo for the surgery.
Twelve. The dirty dozen.
Whew!
So here I am, driving with my son, trying my best to forget that the little times like these will not last forever. I look into the sky and marvel at the incomprehensible splendor of an Oklahoma sunset. I listen to the music and am amazed at the creativity involved in certain songs.
But I don’t look at Ford, for I don’t want him to know I’m crying.
A Slippery Slope
I’ve been struggling during the last few weeks to regain my strength and “feel good.”
Normally, chemo knocks me down for three or four days and I’m ”dead in bed,” trying to eat and drink and get my energy back. This is followed by a couple of so-so days, when I’ll feel good for stretches, then suddenly bad. But after that, I normally start feeling pretty good again.
Eight good days, two so-so days, four bad days. That’s been the normal routine.
Not the greatest way to live, but doable. More good days than bad, after all.
After the radiation procedure last month, however, my energy was noticeably down. The radiation would remain in me and be detectable for thirty days, which means it only ended yesterday. And radiation does have this way of sapping one’s energy. Plus, during this time I’ve had chemo twice.
As a result, I’ve only had about six or seven good days during the last thirty, less than one good week out of the last month.
The hope, of course, is that this is a temporary setback; that we did the radiation procedure, sirtex, with the hope that it would buy me more time. Good time. I’ll find out the answer to that question next week when I’m in Houston.
But it has given me a rather scary glimpse into my possible future. That is, what it’s like when a terminally ill patient crosses over that slippery slope of hope and begins having more bad days than good.
Can’t say I’m a big fan.
Truth is, it’s much easier to keep a positive attitude when you’re still having more good days than bad. It’s definitely worth it, to trade four bad days for eight good ones and a couple of in betweens. But when you start trading three bad days for one good day, yikes!
I catch myself talking about how crappy I feel all the time. (No one likes being around people like that.) Rather than tackling some projects that need some resolution, I find myself in a chair watching bad TV. Instead of writing, one of my very favorite things to do, I procrastinate or curl up in bed.
Anyway, I’m now thirty one days outside of radiation, and three days past chemo. In a couple of days, I hope to be feeling good again. Just in time to head to Houston for big news.
What Happens Now?
Now that the sirtex procedure (that is, the radioactive spheres they injected into my liver) is over, people have been asking when I’ll find out “if it worked.”
As I understand it, it takes about 30 days for these little spheres, or beads, to do their thing. The radioactive half-life is about 60 hours, which means that right now the radioactivity is already about 1/32nd of what it once. By day 30, the radioactivity will essentially be gone.
At that point, i.e., in the latter part of July, I’ll be heading to Houston once again. I’ll do the scans, give the blood, speak with the doctors and find out where we stand. Did the spheres improve the status of my liver? What happened with the lungs in the meantime? Are there any other areas of concern?
Stay tuned for the answer to these and other questions on the next episode of One Life to Liver.
Good Riddance!
At the end of 2007, just after I was diagnosed as “terminal,” the city of Norman began a major road construction project on NW 36th Street, the main road that leads to the housing edition where I live.
The project was supposed to be done in November of 2008, I believe, for I remember the signs saying something to that effect. However, not knowing whether or not I would make it to November of 2008, I was a little miffed. It didn’t seem fair that I would have to deal with the nuisance of road construction for the remainder of my days.
A year came and went, and I was still alive, somehow. But the road construction was still alive too, and thriving. There seemed to be no end in sight.
As 2009 rolled around, I couldn’t help but wonder which of us would outlast the other. Would I live longer than the road construction project or would my funeral procession be driving through gravel and orange cones?
These are the crazy little mind games one plays when facing death.
In mid January things were looking pretty grim for me, as a long-shot medical procedure failed to give the hoped-for results and cancer spread from my liver to lungs. Meanwhile the road construction seemed to be nowhere close to being completed. Arrgghhh!!!
But then, lo and behold, the tide started turning. I made it to mid April with no further progression of the disease. Meanwhile, several phases of the road construction suddenly ended. I had a real shot, it seems.
This week, after recuperating from another surgery, I finally had sufficient energy to head to work. And what to my wondering eyes should appear? Four brand new lanes and real sidewalks, my dear.
Eureka! I’d done it. I had lived longer than that mile of nonstop traffic, tractors, gravel, and dust.
I was thrilled.
Until I hit I-35. Road construction is due to be completed on that project in June of 2010.
I wonder…
