My last blog post was April 13. I have tried every day since to gracefully accept the measure of health I can wrestle from a disease process that is for now being held at bay…by a pill a day. Those pills cost my insurance company over $500 a day. The math nearly brings me to my knees.
Thankfully, all my systems are within acceptable limits and the tumor in my spine is being kept stable by a daily 60mg dose of Cabometyx. When I run into friends I haven’t seen in a while, there’s a time warp to connect the sixty-five-old me to a fat profile that, when I last sported it, I was walking the halls of Hardaway High School. If you think that’s weird for you, you should feel it from this side.
Know this, Jill and I appreciate the constant love we feel from every channel of our lives. I never dreamed we’d still be at it ten years after my diagnosis. We are grateful for the gifts we’ve been given and for the legions of family and friends with whom we’ve shared our lives.
We had a perfect Christmas this year. The annual Christmas hayride happened for the first time in three years and I hope we made a few memories. Saturday, on the day of our hayride, a crisp, bluebird day was a perfect backdrop for our ride.
We got some good face time with all the boys and their significant others, our parents, siblings, some nieces and nephews and friends during the Christmas holiday. I think Jill and I had a personal best in the holiday decoration category. Unpacked it, put it up, took it down, packed it up. Back in the barn. Bam!
For the past couple of years, we got a unique perspective of the courtship of our son, Christopher, and his main squeeze, Kathryn Anderson, of the California Andersons. Some few months after they met, Kathryn joined our team at “Columbus and the Valley” and got to witness firsthand, a rare glimpse into what makes her tick that most “parents of the partner” would never get the chance to see.
We are thrilled that Kathryn and Christopher are engaged! Here’s what I’m more excited about: I’ve watched our son blossom with Kathryn at his side. She makes him happy and that makes me happy. She is compassionate about her causes, really smart, protective of her pack, competitive and so much fun to be around.
Having the great pleasure of working with Kathryn and getting to know her organically and we enter our new roles in each others’ lives. I could not be more excited about having Kathryn join our family.
That’s all I’ve got for now. That, and this big ol’ smile.
Decisions Get Tougher
Outside the window an agitated crow is taunting me on this rainy Sunday afternoon. He’s telling me to sit down and write. I just left a Norman Rockwell painting in that other bedroom. There in a comfortable chair, connected to wifi, within earshot of an occasional hiss of tires over the wet county road just to the north, Garth and Bernie are both sleeping, one snoring, on the bed behind me. With the only window in that room at the head of the bed and covered by blinds and curtains, my words seem to be begging for the open spaces outside and better visiblity from another part of our home. So I made my way over to our old bedroom on the warm end of the house and sat down at a desk with a diminished view of our recently-trimmed and freshened up front yard through one of several failed, repurposed windows we used during our renovation over 20 years ago.
Looking through that hazed glass, except for that crow and the occasional car out on the road, everything is rainy Sunday afternoon quiet. This Sunday was not a typical one. I preached at church this morning.
And yes, the walls are still standing.
I volunteered for lay reading duty today and rather than sticking with just my preferred Rite One version of Morning Prayer from the Episcopal Book of Common Prayer, I like to steal a sermon (with attribution, of course), usually from Sermons That Work, and tweak it to suit the lessons of the day and our little parish’s world view and deliver it along with Morning Prayer.
A few days ago, Jill sent me a sermon for Epiphany VI (today in the Episcopal Church) by priest and family friend, Dean Taylor, who is interim rector of Church of Our Savior Episcopal Church in Jacksonville, Fla. I hope Dean will approve of my using his work at St. Matthew in-the-Pines Episcopal Church this morning. I can’t speak for our little band of faithful parishioners, but I left our church this morning feeling pretty good about what Dean called my “seat on the Ferris Wheel.”
Basically, if you’re lucky enough to live a long life, you’re going to spend some of your days at the top of the Ferris Wheel and some at the bottom. Some days you’ll be rising from the bottom, you’ll peak and then take another turn to the downside on the way to the bottom, only to rise again another day. That, folks, is inevitable. The challenge in Dean’s sermon came when he encouraged us to keep our humanity as our fortunes change — to be faithful to our core values both in times of prosperity and in times of great loss. It is important to me, important enough to warrant a significant amount of my time and energy, to try to be an accessible, loving, compassionate, engaged, enthusiastic, grounded man, in spite of the increasing list of physical and emotional limitations with which I have to live.
If you know anything at all about me, sometimes you have to listen to a story to get at some information you’re looking to get. Everywhere I go people encourage me to keep documenting my experiences with cancer. I can’t write as frequently as I once did for some reason. So, when I can coax myself to sit down and lay down some words I have a few things to say. If you’re put off by my verbosity, I get it, but I can’t help it.
I guess every patient has his way of dealing with cancer. I have to know where I’m going and if my path isn’t clear I’ve found that it affects me on almost every level. I have trouble concentrating when I’m untethered to a plan. I am in a dream book club, attended by a loyal cadre of people who I admire for their wit, intelligence and commitment to this region’s well-being. I haven’t been able to read a book for enjoyment in over three years. The right thing to do would be to start going to book club and I expect being around those friends would be good medicine. constant fear and turmoil is unsettling and makes formerly easy tasks more challenging.
There are still unanswered questions left over from our last trip out to M. D. Anderson Cancer Center. I have been researching pieces of information I received in a meeting with Dr. Eric Jonasch and had hoped to have more answers before I wrote this. There will be more information coming as I discover answers. I didn’t ask enough questions in our meeting. Maybe it was because my curious companion, Jill, wasn’t there. I still have access to Dr. Jonasch and have sent him an email that includes the questions I should have asked while I was in his presence last week.
I am thankful that my disease appears to be stable. The tumor in my spine doesn’t appear to be growing and that alone is something to celebrate. This trip was intended to open discussions that will identify and quantify our options in the event that the tumor becomes active again. On our last month’s trip out to Houston to meet with neurosurgeon Dr. Larry Rhines, we heard about a surgical procedure called an en bloc spondylectomy. It is a massive, potentially debilitating surgery and honest to God, hearing that as a possible destination along this trip from hell scared me silent. It marries some of everyone’s most potent fears: pain, temporary mobility issues and possible long-term physical limitations like being able to walk, perform simple bodily functions and the risk of sharply negative changes to lifestyle.
So, we left the last trip with plans to meet with Dr. Jonasch and have him define possible other avenues of treatment in case we have to go down another few miles of active disease dirt road. This was the trip where we had hoped to hear that after a five-year layoff, radiation might be available as a less-invasive, potentially less scary option to beat down active disease. According to Dr. Jonasch and his discussions with top M. D. Anderson radiation oncologists, additional radiation isn’t advisable in my case.
On the surface, that leaves other drug therapies and surgery as my first lines of defense. Bone metastases respond slowly, if at all, to drugs and surgery, as I’ve already explained, is especially frightening and risky. Dr. Jonasch mentioned that we could add immunotherapy as a potential multiplier to my seemingly successful current drug therapy, Cabometyx. That cocktail is what I’m yet to fully understand. I don’t know if we’re talking about a clinical trial or an existing therapy. I don’t know if that treatment is one I could access here or if I’d have to travel to get the therapy. If Jill had been with me, all those questions and likely many more would have been asked and I might know more than I know today.
Being unsure about medical consequences that could so greatly change the outcome of the rest of my days is sobering. It is hard to know how to talk about things that loom so large. This seems like one of the times to just lay it out there and show the immense weight of some of the decisions you have to make when you’re classed as a terminal, stage IV cancer patient. This is the hardest thing I’ve ever had to do. I’ve always been the kind of guy that needs answers — to feel like I’m on the right track. This disease unfortunately doesn’t play that way. Sometimes the fear of the unknown, or even a worse fear of making a costly mistake can mire you in minutiae and rob you of life momentum.
Bringing your best self to bear on that fear and doing what you can to keep moving forward becomes a full time job. It is job that doesn’t make you a dime and costs you real money, discarded organs and flesh. Talk about skin in the game!
There is something about being 65 years old and living almost nine years with a life threatening illness that crystallizes what you’re willing to fight for. I got a couple of clear examples of that on this trip to Houston. Houston is America’s fourth highest populated city. On our recent trips, we’ve seen ugly, car-swollen highways and inviting, interesting city streets that seem to beckon you to stop and explore. Some parts of town seem to have completely gone over to vehicle dependency. Those areas are congested, seemingly soulless and you’re greatest impulse is to get out of there as quickly as possible. Other areas, like the Rice Village neighborhood, move a little more slowly, but provide respite for the eyes and soul. There are many reasons to stop your car, get out, explore and spend money.
There is an important deliberation coming up at Columbus, Georgia City Council this week. I think Will Burgin did a great job in his op-ed piece in today’s Columbus Ledger-Enquirer. We have a once-in-a-generation opportunity to make a decision that shows great restraint and wisdom over a half-mile stretch of 13th Street that bridges the important MidTown and Downtown neighborhoods of our city. We are the only country in the world to have jumped with both feet into an experimental decentralization of our population by moving toward less dense living in the suburbs and away from more dense, pedestrian and alternative transportation friendly living closer to our city centers. It is an experiment that is not mathematically or economically sustainable.
Will does a nice job of explaining this important Tuesday vote. I hope you’ll click on the link in the paragraph above, read Will’s op-ed, and go to MidTown’s blog post about the proposed road diet and make your own determination about the project. Then MOST IMPORTANTLY, get in touch with your city councilor and let them hear from you! Here’s how you can reach your local lawmakers. Don’t sit on the sidelines for such a huge free opportunity from the Georgia Department of Transportation.
I had the completely unexpected pleasure of being seated next to Hardaway High School classmate, Joanie Leech Roberts, last night at the Muscogee County Library Foundation Gala. Joanie and her family moved to Columbus from Rome, Ga. midway of our junior year at Hardaway, when her father’s job with Southern Bell Telephone Company moved them here. The conversation we had as we caught up with what we’ve both been up to since we graduated high school in 1971 made me even more committed to fight for every possible thing that will make this place a more civil, inclusive, prosperous place to live. Author Gayle Tzemach Lemmon’s proclamation from the podium last night that women filling important special operations combat roles has been ignored by ninety-nine percent of our country, makes me wish I had the power to make people get interested in things that are important to our way of life.
In no small way, whether or not we look this GDOT gift horse in the mouth, will make a loud statement about the kind of place in which we want to live. I want to go on record here as saying I want this road diet to happen. I don’t live in Columbus, but we have a business and pay taxes here, and I will be contacting ALL of the city councilors between now and Tuesday morning to let them hear my voice on this important subject. Please join me.
Sorry for the length of this post. I’ll try to do a better job of communicating, but damn, this is getting tough.
408 Hours
This blog was never intended to make a soul feel sorry for me. I started it as a communications channel for friends and family a couple of days before my nephrectomy. Once the surgery was over and I was in throes of sickness, still writing, and people started getting touch with me, something changed about my blog mission.
Cancer is a lonely disease. Even surrounded by families and armies of friends, the patients spend a great deal of time inside their own heads. Any shred of information about something that might make you well, save your life, make you feel better, keep you around, is precious. I have made a bunch of friends, who were that beacon of knowledge and hope for me from when I was a young pup of a cancer patient. I have spoken/written/texted some of them as early as today at lunch. They mean a lot to me.
So, I changed my tune and decided to go ridiculously beyond a communications channel. I wanted to write about living with cancer. God knows more and more people every day are forced to figure that out. It isn’t an easy process and being able to see into the lives of people who are further down the road is a good thing.
I get enough feedback to know this blog has struck a chord with my readers. This is why I write.
Oh what a difference 408 hours make. 408 hours ago I got the news of the spinal tumor. After multiple times of getting this news, the
• Shock and awe
• Sadness
• Fatalism
• Anger
• Research
• Resolve
stages are sped up. And because they take place in such a compressed timeframe, they’re more intense. This time it took me 408 hours. I think my last few blogs posts have borne that out. A half hour ago I was on the phone with Dr. Andy Pippas — the fifth time we’ve spoken today. He joked with me! We laughed and had a little best-friends-over-a-beer banter. Blue Cross Blue Shield of Alabama had an issue with the Cabozantinib prescription. Even though EVERYONE I know in the kidney cancer community, those people in the trenches keeping people alive and thriving, know that this drug is particularly good medicine for RCC patients with bone metastases.
Ain’t nobody got time for that.
My call this afternoon was the good Dr. Pippas recommending that we go back to the horse we know. Yes. I had come to the same conclusion. I’ll be starting Votrient right away. Hello 35-inch waist! And that athletic cut suit I bought from Chancellor’s — the same size I wore when I walked the hallowed halls of Hardaway High School — is waiting in a bag in my closet. I got a haircut today. Emily has never seen me with white hair. I showed her a picture of what lies ahead.
What has snapped me out of my funk? Today it was music. I’m listening to a snappy ’80s Spotify playlist that Jud Richardson posted. Today has been a productive day. I’ve got my emotional legs under me, steeling for the fight and expecting to win. This is such an emotional ride. Every day as I write these posts, I can’t believe where we’ve come from. Wicked turns on a life-sized rollercoaster.
I’m writing it because I have to.
Thank you for the life-affirming displays of love. Thank you for the prayers, calls, the cards, the incredible quotes, the offers for plane rides, Go-Fund-Me accounts. We’re not there. Not saying we won’t get there someday. But it is not today. Damn, I’m beginning to think I might’ve had a good career as a televangelist. I’m also thinking I might need to get Jill to take my computer away from me when I’m in my either of my Sad or Fatalistic stages.
Thank you for following along and we seriously appreciate your prayers and wishes for my health and wellbeing.
Sad Display of Bullying at Last Night’s MCSD Board Meeting
I live in Alabama and I don’t have any children in Columbus public schools. Two of our sons, Michael and Adam, graduated from Hardaway High School, so there’s that. In spite of literally not having a dog in that fight, I remain intensely interested in the health and effectiveness of our Muscogee County School District, because great schools train great future employees and leaders, both being mighty important to our region’s economic development.
After putting my news nose into the wind yesterday, I had a feeling that last night’s Muscogee County School District meeting might be one for the record books, and that I probably should attend and see for myself what I have heard others say about the tone of the meetings.
Jill and I went to the meeting last night. It was my first MCSD school board meeting. I hope that many more of you, whether you have children in the public schools or not, will go and watch that process some time soon.
Jill and I each said one word several times last night on the drive back to Seale and even after we were in bed. “Wow!”
Just “Wow.”
Wow, I can’t believe what I saw and heard there.
“Wow.”
Wow, I can’t believe Frank Myers referred to Superintendent Dr. David Lewis and Chief Operations and Facilities Officer David Goldberg as “You two birds.”
Wow.
How Frank Myers called David Lewis a liar. Out loud — with TV cameras rolling, in spite of the sweet presentation on RESPECT delivered by four children from a local elementary school.
How Myers finger-pointed and ranted about how he was “sick and tired” of this, that and the other and threateningly engaged other members of the board and the MCSD cabinet and then immediately began Facebook postings, writing or shuffling papers, very obviously not caring to hear what the person he was dogging had to say in reply.
A strong memory from my childhood is how I felt when I went to church as a little guy. I knew I was going to leave that church every Sunday feeling depressed. Just down. I went into each Sunday morning session knowing that I was going to be beaten down. I knew I would leave feeling smaller than I did when I walked in. It was such a bad experience that, to this day, I almost get sick to my stomach when I pass by my old church building on Hamilton Road.
That is exactly how I felt as the meeting last night opened with four precious children from Allen Elementary School talking about the efforts they make in their lives to treat others with respect. It was so cute that they held up the letters R-A-O-S (just a slight, old-school technical glitch), and talked about how they SOAR when they treat their classmates with respect. There was no more respect shown from the right side of that dais for the next more than three hours.
Here’s the other thing: Jill and I have gotten to know Karen and David Lewis. They are really fine people. We’ve had dinners with them and have found out just how much they love our community. They’re planning to retire here. The other thing I learned from them is how shocked they are that there is so much anger aimed at our local school board and administration. I really don’t think they’ve ever seen anything like what is going on here.
Beyond the friendship, David Lewis has got the passion, the knowledge and the personality to take our schools to the next level. He deserves the respect of a grateful community. He does not deserve to be called a liar in a public meeting in front of his wife, his cabinet, his board and his employees.
Frank Myers is a schoolyard bully. He’s a tall, imposing guy and his lawyer swagger just accentuates the bluster. Everyone in the room with a bully is wary of him. What is he going to say or do next? When will he point that finger at me about something else he’s “sick and tired” of?
We live in the Deep South, where people are a whole lot of different things, but what we are most is kind. We are genteel. We usually treat even our worst enemy with kindness and respect. Not so at the Muscogee County School Board. Not so when big, bad Frank is in the room.
There was joy in that room last night. People brought their families to see the votes that honored their loved ones with a promotion or a new job. That joy was short-lived as we all dived back into the sludge that was our county’s school board meeting last night.
You know the feeling when you’re walking at night along a stretch of unfamiliar road in a strange town? That feeling like something bad could happen and catch you by surprise? That is exactly what that meeting felt like last night and I am profoundly sad that it has to be that way.
From what I saw and what I have read, Frank Myers wants David Lewis to go back to Florida. My clear sense also tells me that Myers, if he’s allowed to keep his seat on the board, will think exactly the same thing about the next superintendent.
That’s exactly the way all bullies act — until they get the final, verbal ass whipping they deserve. Stirring up people’s feelings just because you like to do it is no excuse for the embarrassing show that Frank Myers put on last night. I think it is safe to say the palpable tension was unhealthy for every person who was in that room.
Hoping it will get better may be too much to ask for, unless Myers’ cavalier attitude about the rules, finds him on the wrong side of one of them and an angry citizenry decides to recall him from office. I think this is a great example of how someone’s passion about something diminishes his ability to act in a civil manner. My momma wouldn’t have put up with it. I’m thinking Frank Myers, like brilliant singer/songwriter Jason Isbell in his song If it Takes a Lifetime says, has “got too far from his raising.”
The Beat of My Life
Riding in to work this morning I was listening to the radio and the Christmas song, “Sleigh Ride,” came on. The strings, brass, woodwinds and percussion swirling in my head like a Colorado snowfall. I became aware that I was playing the percussion parts on the steering wheel. Beat for beat, especially the
“clip, clop
clip, clop
clip, clop
clip, clop
clippity clop
SLAP”…part.
My underarms also began to get moist. I was that 16-year-old boy with moderate adolescent acne on the stage at Hardaway High School, watching George Corradino’s direction, surrounded by my friends, who were also nervous, waiting for their parts to play out.
We had so much fun traveling to football games, marching at Falcons half time, playing drum cadences at Christmas parades, pep rallies and concerts. I didn’t realize at the time that all this fun was giving me a wonderful education. The love of learning music continues to be one of the greatest gifts of my lifetime, right up there with reading.
As I drove this morning, thinking about all the ways music has influenced my life, my relationships, my every waking moment and even a couple of my idiosyncrasies. Especially the one where I pay attention to when my windshield wipers are perfectly on, or off, the beat and the times they leap — just ahead, or lag back ever so slightly from — the beat of the music. If it is raining and I’m in my car, I will most assuredly be thinking about windshield wipers and whatever music happens to be playing.
At Arnold Junior High School Larry Kirkland was my first band director. He was a wild man. Beat me with his baseball bat “esque” paddle. Threw a metal music stand over the heads of the clarinet section onto the wall where my head had been before I hit the deck. Despite his borderline psychotic demand for perfection, there wasn’t a single person in that band that would have hesitated to take a bullet for him. He died of a heart attack while in his 20s.
George Corradino was my band director at Hardaway High School. He was tough, but we weren’t afraid of him. We wanted to do well so as to not disappoint him. Like when you don’t want to disappoint your dad. Mr. Corradino still plays gigs around town and I saw him last night. He is still a handsome man with more talent in his little finger than most people have inside their whole being.
I thought today just how much my life would have gone missing without my music education in our public schools. I’m happy that our newly “PhD-ized” Dr. David Lewis is a musician and feels strongly about the good that comes from music and arts education.
Music gives me goosebumps. Music makes me happy. Music makes me sad. Music makes me angry. Music provides the back beat of my nearly 62 years of life. I owe my love of music and my arguably impeccable sense of rhythm to music education in the Muscogee County Public Schools.