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…
Post Surgery
I’m resting at a hotel in Bartlesville, a day after having radioactive spheres injected into my liver.
The surgery was done by Dr. Coldwell, a Dallas surgeon who comes to Bartlesville one week out of every month, primarily to do this particular surgery on people like me. He’s an extremely nice man, and it’s clear the hospital staff loves him. He is one of the country’s leading experts on this particular procedure, which is quick, but rather tricky.
I arrived in my old hometown on Monday night. Can’t claim to have been in a good mood, however. I was pretty down, really, for me, and I spent the time alone, reflecting on everything that’s messed up in my life.
After this pity party, I tried to get some decent sleep, for I was due to arrive early at Jane Phillips Memorial Hospital on Tuesday at 6:30 a.m. This is the same hospital where two of my sisters were born, by the way, and it’s about a mile from the house where I grew up.
On Tuesday I would have a “pre-procedure” with the actual procedure to follow the next day. For the pre-procedure, Dr. Coldwell would inject a dye into my liver to make sure the radioactive spheres would not travel to my stomach, which would cause an ulcer, or my lungs, which could kill me.
As I left my hotel room, a thunderstorm was brewing up. The sky was green, churning and swirling, and I expected the tornado sirens to go off at any moment. This was fairly ironic, for my fascination with all things weather began in 1980, when I watched from my bedroom window as a tornado dropped down upon Bartlesville and then lifted right over Jane Phillips Memorial.
I made it to the hospital, of course, and ran inside just as the rain began pelting down. Before too long I was chatting with Linda, a kind nurse who also had colon cancer that spread to her liver. She’s had a liver resection and seems to have beaten it, for now, but we spoke a lot about the ongoing emotional battles people like us face.
They soon wheeled me into the surgery room and gave me a drug “margarita” through my port. The drugs would prevent me feeling pain, but would not knock me out entirely. Two nurses, age 29 and 45, were helping with the procedure. One brought out a trusty electric razor and began shaving my groin, while the other assisted by adjusting my gown from time to time while speaking to me about her back surgery. Yikes!
I got fairly loopy at some point, apparently, and began reciting poetry. I’m a total wimp when it comes to medication, so I slept through most of the procedure.
Everything went well, I’m told, and I was dismissed from the hospital at about noon. My parents picked me up and we went out to eat at Outlaw’s Chophouse, a nice restaurant owned by my old high school buddy, Rhonda Bailey Parnell and her husband Dave Parnell. Then I went back to the hotel and crashed.
My family arrived late in the afternoon. We went to Dink’s Barbeque, our favorite Bartlesville restaurant, then caught a movie.
On Wednesday, it was the same procedure all over again, except this time they injected the radioactive spheres, rather than the dye, and the nurses shaved the left side of my groin rather than the right. I didn’t recite any poetry this time, to my knowledge. Instead we chatted about movies and restaurants.
I left the hospital in the middle afternoon and went back to the hotel. My family headed back to Norman, for they had appointments. I crashed hard and woke up hours later, feeling fairly miserable. My chest was sore and bloated, so I sat in bed trying to drink something and feel better. But this didn’t help much.
A group of my old Bartlesville friends were gathering that night. Jim Bishop, who was the best man in my wedding, and his wife Melissa were staying at the home of our good friends, the Harrisons. Dana Brock Cross and Jennifer Williams McKissick were there too, and the Tucker’s daughter Kim would arrive after an OK Mozart event she was attending. They wanted me to come over if I was up to it, but I was feeling pretty lousy.
So I had a choice to make. I could sit in my room and feel lousy or I could go join my friends, feeling lousy but making a memory. For me, a decision like that is a no brainer, for friendship is about 80% of what matters in this world. I joined my friends, and I’m really glad I did.
Gearing Up
Another surgery, less than two days from now, and I’m trying to get geared up for it, whatever that means.
Pumped $33.00 worth of gas into my vehicle. Declined the car wash.
Went to the bank and got a little spending money for the road, just enough for some Dink’s Barbeque, some hotel snacks, and tip money for nurses.
Packed my suitcase. Remembered my toothbrush and jammies this time. Brought four changes of clothing and an extra pair of underwear. (Things happen. Better to be safe than sorry.)
Picked out three books, because I always overestimate how much reading I’m going to do.
Brought some poems to edit, because nothing improves one’s poetry like some good old-fashioned radiation.
Deprived myself of just enough sleep so I would have a headache all day.
Received last second details from “Cindy” at the hospital. Wrote ‘em down. Left ‘em on my desk at work.
Printed out my living will.
Put my favorite CD in the car, with songs from Elvis Costello, REM, David Bowie, the Kinks, the Clash, etc. Oh yeah, and Dancing Queen by Abba. Just kidding… maybe.
Said a little prayer, then got in my car and headed out, trying to stay cautiously optimistic.
Seasons in the Sun
I’ve always had a special place in my heart for Seasons in the Sun, that ultra-cheesy seventies tune by Terry Jacks. (The song was actually a remake of an old Belgian song, written by Jacques Brel. The English lyrics were by beat poet Rod McKuen.)
In my hopelessly mixed up world, certain songs are so incredibly bad that they’re actually rather good. It’s difficult to explain how this works, but it seems to take a weird combination of catchy pop music, horrible lyrics, bad taste, drippy sentimentality, and unapologetic sincerity for a song to make this delightful leap from bad to good.
Maybe it was just the times, but many seventies songs fall into this category. Convoy. I Think I Love You. Kung Fu Fighting. Dancing Queen. Torn Between Two Lovers. Rhinestone Cowboy.The Night Chicago Died.
The list goes on and on. King Tut. The Streak. Y.M.C.A. Telephone Line.
Curiously, some bad seventies songs were never quite able to rise above their inexplicable awfulness. They were bad then and they just stay bad, forever. Songs like Disco Duck, The White Night, Having my Baby, You Light Up my Life, Love Will Keep us Together, Escape, Muskrat Love, Reunited, and I Write the Songs. (By the way, as a general rule, all songs by Air Supply, Andy Gibb, Hall and Oates, Helen Reddy, and Barry Manilow fall into this category.)
Speaking of Andy Gibb, the string of pop hits by his famous brothers, the Bee Gees, are not so easy to categorize. Anything pre-Saturday Night Fever is potentially on the hurt-so-good list, songs like Fanny be Tender, Nights on Broadway, and I Started a Joke. But anything after Saturday Night Fever is pretty much bad. Tragedy and Too Much Heaven, for instance.
And what of the songs on the Saturday Night Fever soundtrack? Well, they are forever on the bubble, it seems. We could debate their worth into infinity.
One of the best ways to move over from the bad list to the so-bad-it’s-good list is to actually have someone die in the song. That’s why songs like Billy Don’t be a Hero, Run Joey Run, The Night the Lights Went out in Georgia, and Rocky all qualify without any great argument. I’ll even throw The Blind Man in the Bleachers in, although it’s a little shaky. Even Copacabana, a Barry Manilow song, sneaks in under this exception.
Seasons in the Sunis probably the greatest of all the cheeseball seventies song, especially those dealing with death. It is wonderfully catchy, weepy, and, well, awful. I love it! It is pure pop music, yet it deals straightforwardly, almost happily, with one of the toughest subjects of all. It contains some of the worst lyrics and in-your-face sentimentality of all time. And yet, it can, at times, seem almost wise, even profound. (”but the wine and the song like the seasons have all gone.”) The really good bad ones have this sneaky tendency.
In the song, the songwriter is dying. We don’t know why, because he never tells us. The only hint we have is that “it’s hard to die, when all the birds are singin’ in the sky, now that the spring is in the air” repeated thrice, which, if I’m not mistaken means our tragic protagonist won’t be seeing summer.
So from the outset Seasons in the Sun requires listeners to suspend disbelief and just accept the fact that our hero is a dead man walking. We can argue about alternative therapies, magic potions, medical trials or prayer all we want, but this would be beside the point.
Interestingly, the singer chooses three people to whom he would like to say a final farewell. Why three? Well, this is pop music, after all, and a three minute song has no more room for goodbyes.
The first goodbye is bestowed upon the protagonist’s “trusted friend,” a person he had known since the two were “nine or ten.” We don’t know if this trusted friend is male or female or whether their friendship ever moved beyond that point to something more scandal-worthy, but there are certainly a variety of interesting interpretations. Be that as it may, the pair had apparently sewn their wild oats together, for beyond climbing hills and trees (these are possible metaphors, by the way), they had ”learned of love and ABCs” (but hopefully not in that order). Later, we get a bit more of the picture, when the protagonist admits the pair had shared physical and emotional pain (”skinned our hearts and skinned our knees”), before parting with a not-so-random observation that “pretty girls are everywhere,” even as he is about to die. Ouch! No matter what interpretation you take, that hurts.
After saying goodbye to his trusted friend, the protagonist moves on to “Papa,” with the emphasis on syllable two rather than syllable one. Our dying hero has a lot of guilt and regret pertaining to his father, apparently, for he immediately asks Papa to pray for him, before describing himself as the “black sheep of the family.” Papa had tried in vain to teach our protagonist right from wrong it seems, but like the Prodigal Son our young man had chosen “wine and song” instead. It’s possible, then, that he is dying of liver failure, but that’s only conjecture. However, if true, it might explain the rather cruel suggestion our hero makes when he tells Papa to revisit his death over and over each time he sees a small child, for they at least are unspoiled and have not succumbed to the enticements of the grape.
We move on then to our third goodbye, which is saved for “Michelle, my little one.” Michelle could be a girlfriend or she could be a daughter. We’re not entirely sure, but for purposes of the song it doesn’t really matter. (By the way, I refuse to examine those lingering Alice in Wonderland theories that keep surfacing. Have you no shame?) Michelle, whoever she was, reportedly gave our hero love and helped him “find the sun,” which is pop music code for overcoming clinical depression. Indeed “every time” our hero was down, Michelle would apparently appear out of thin air and help him get his feet “back on the ground.” I guess it is possible, then, that Michelle is a guardian angel, a fairy godmother, a wood nymph, or a licensed psychiatrist, but my gut says she’s a girlfriend with a rather small frame.
Anyway, beyond all this silliness, Seasons in the Sun asks a very probing question, the only one that has any relevance to this series: If you were dying who would your trusted friend, Papa, and Michelle be?
Financial Ruin
NBC broadcast a report this morning about the extraordinary costs associated with cancer care.
The report discussed how often a cancer diagnosis can lead a family to bankruptcy, even when that family has good insurance. Supposedly 100,000 new bankruptcies are filed each year as a result of a cancer diagnosis.
For those without decent insurance, the situation is even more grim. For them, a cancer diagnosis usually leads to financial ruin or, quite frequently, death, as they forego much needed medical treatments.
We can certainly relate. As a lawyer for the state of Oklahoma, I have very good insurance. So when cancer struck at the age of 37, I assumed my insurance would give me all, or at least most, of the protection I needed.
Unfortunately, my cancer was extremely rare and aggressive, and there were no local experts for my disease. A regional cancer treatment center, like M.D. Anderson, in Houston was my best hope.
Thankfully, my insurance reps agreed to treat M.D. Anderson as “in network,” so that my treatments are processed at the same rates as they would be had they been incurred in Oklahoma, thus saving me thousands and thousands of dollars.
But that’s not the end of the story. Insurance doesn’t cover the costs associated with going back and forth to Houston. And so, when I head down to Houston for treatments or consultations or exams, all the travel costs are mine. That includes airplane tickets, gasoline, rental cars, meals, hotel bills, parking, and any “entertainment” we may decide upon to keep ourselves from going crazy. These costs can add up quickly, especially when you must head to Houston four to eight times a year.
So when cancer first struck in 2001, our savings took a big hit, to put it mildly. Before long we were charging the bulk of our trips to Houston to credit cards. When those balances became too large, we took out a second mortgage. And then, when the credit cards started escalating again, we sold our house, using the equity to pay off old bills.
When my latest bout with stage 4 cancer began, we were so exasperated by the thought of facing this same scenario again–that is, mounting credit card debt and the associated financial strain–that I actually considered giving up. That is, to let the disease run its course and just die, rather than leaving my wife and children with huge debts, for the likelihood was that I would die anyway.
But some dear friends, Kay and Ron Mercer, stepped in and set up a family/medical account with a local bank. Whenever LeAnn participated in a run, the Mercers sent out letters to friends, telling them about the account and requesting donations.
That account has saved us. For even though we have good insurance, the medical account has provided that extra cushion we need whenever insurance has paid all it is required to pay. As a result, our credit cards balances are stable, and we have at least some sense of financial normalcy.
We are lucky to have friends like the Mercers, and others, people who see a need and then step in to help. We are truly blessed by their acts of kindness and by those of you who have contributed to that fund or helped in some other meaningful way. We thank God for you and pray that we can grow in wisdom and empathy as a result.
Surgery Upcoming
Another surgery in my future, currently scheduled for June 16th. I’ve quit counting how many surgeries I’ve had, but I’ll attempt a quick recount here.
It’s not pretty.
Had my stomach pumped twice as a kid for eating medicine that tasted like candy.
Tonsillectomy as a kid.
Won’t count the rabies shots, which hurt like hell, or the warts I had burned off my foot, which hurt even worse.
Two shoulder surgeries in high school, the result of a football injury.
Three knee surgeries, the aftermath of a lawyer’s league basketball game.
Five surgeries on my right arm, including the, gulp, amputation. God, I hate that word.
And then, those breast implants. No wait, I decided against those.
A surgery to install a port for chemo.
A surgery to install the titanium pump and remove my gall bladder.
And now, the new surgery, which is apparently my 16th!
It’s called sert, and it involves injecting radioactive spheres from an artery in my leg into the tumors in my liver. It’s sort of like those radioactive beads they give to prostate cancer patients. Here, the radiation is fairly low, but concentrated in the tumors themselves. It’s an outpatient procedure that only takes about an hour. Will likely make me nauseated for a couple of days, but no worse than chemo. And the outlook seems fairly promising.
So say a prayer for me, if you pray, or send out good thoughts if you don’t. I plan to keep fighting this thing.
Anniversaries
Just in from vacation, a time of much needed relaxation after one of the craziest months of my life. My family spent five days on the beach, where I read five books and wrote as much as I could. Oh yeah, I also ate about a pound of guacamole each day.
On May 31, I was out on the beach, writing, when I suddenly remembered it was my anniversary.
We have so many anniversaries. First and foremost, we have wedding anniversaries; my twenty-second is coming up in July. My parents just had their fiftieth. We also have work anniversaries. I will have worked at the Oklahoma Court of Criminal Appeals for twelve years this November, and in July I’ll begin my fourteenth year as a worker for the state of Oklahoma, knock on wood. Birthdays are an anniversary of sort. I’ve had 45 of those.
There are anniversaries related to the time we first met someone or went on a date, anniversaries of how long we’ve lived in a certain city or house, and anniversaries of a big event in our lives, like graduation from high school or, for me, the publication of my first book (November 2006, by the way).
Not all anniversaries are happy ones. Each April my family grieves on the anniversary of my sister’s tragic death from a car accident. There are many anniversaries like this. September 11. The anniversary of the Oklahoma City bombing. I had a dear friend write to me a few days ago about her anniversary as a widow, her husband having suddenly died eleven years earlier.
Cancer patients often have more anniversaries than they can shake a stick at. I just “celebrated” making it twenty months since being diagnosed with stage four liver cancer. In September it will have been five years since my arm was taken. (Please, spare me the “give me ten” jokes.)
And on May 31, 2009, while sitting on a Mexican beach, I became an eight year cancer survivor. That is, it had been eight years since I first discovered something was not quite right with the triceps muscle of my right arm. A lot has happened since then, more highs and lows than I could have ever imagined. But, even though I’m receiving chemo as we speak, I’m still ticking and hoping to see many more anniversaries, whether they be anniversaries of triumphs or tragedies.
