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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.

 

 

 

February 11, 2018 | Tagged With: bone metastases, Book of Common Prayer, Cabometyx, Church of Our Savior Episcopal Church, Columbus Georgia, Columbus Ledger-Enquirer, Dean Taylor, Downtown Columbus, Dr. Eric Jonasch, Dr. Larry Rhines, en bloc spondylectomy, Gayle Tzemach Lemmon, Georgia Department of Transportation, Hardaway High School, Houston Texas, Jacksonville Florida, Jill Tigner, Joanie Leech Roberts, M. D. Anderson Cancer Center, Midtown Columbus, Muscogee County Library Foundation, Norman Rockwell, Rice Village, Sermons That Work, St. Matthews in-the-Pines Episcopal Church, Will Burgin| Filed Under: Community, kidney cancer, renal cell carcinoma | 7 Comments

Update on Cabometyx and Side Effects

Tom Clancy books open like a flashbang, they settle into 1000 pages of character development that feed straight into a jaw-dropping final chapter. If this cancer I’m so grateful to be able to live with was a Tom Clancy book, I would be in the character development phase. My Episcopalian peeps know it as the Green Season, the Catholics call it ordinary time. My altar is green. I am between tests and procedures, much like the Church is between major feasts, the altar is always green from the Monday after Pentecost through the Saturday before the First Sunday of Advent.

I’m so fortunate to be taking Cabometyx, a hope-inspiring, relatively new drug. I am 35 days into Cabo and the side effects are beginning to lay claim to pieces of my life, my body and my mind.

My last Green Season was my fifteen months with Votrient. It made me as well as I’ve been since I was diagnosed and as sick as a the bad end of a four-day drunk. So, I know about the Green Season. I know about the low times when you’re waiting to know if the poison you’re pumping into your body is killing its target cells. The time before the scan. The time between the big events.

Like I said, “My altar is green.”

People who have to take these drugs know that there are specific side effects that the drug may elicit in patients. Those side effects are outlined in the drug literature in a usually long list. In my mind, it is a lottery. Everybody gets a ticket, or maybe multiple tickets if you have certain medical proclivities (an easy to upset stomach, a quick gag reflex….etc.). Mother Nature reaches into the tickets and she pulls out the side effects with which you’ll be afflicted. Mwahaha! Man plans — God laughs.

Before I write another word: Despite the hard fact that TKI drugs and Mother Nature have visited me with diarrhea, vomiting, nausea, dry skin, bleached hair, dizziness, painful blisters on my feet, sensitive hands, insomnia, compromised taste buds, an aversion to meat, epic weight loss, loss of my finger nail cuticles, white circles around my eyes, temporary liver issues, elevated blood pressure, exposure to scan contrast media and dyes and other generally awful things — I am nowhere near giving up. I have too much to live for during what should be my most fantastic phase of life. An incredible life mate, four equally wonderful sons, Jill’s mom, both my parents, companion animals, church mates, friends, work colleagues, music, art, watching Columbus, Georgia thrive and become a great second-tier city. All these things add up to me wanting as normal an existence as I can muster.

So, I’m studying, asking questions and consulting with Dr. Pippas to make sure we continue to make great choices about how to treat this disease. I met with Dr. Pippas this afternoon to discuss my latest lab results. The numbers that we’re most concerned about relate to how my liver is managing the drug therapy. Today, despite my liver enzymes being in a stable place, my bilirubin is higher than Andy would like it to be. I’m slightly jaundiced and because of that, we’re going to have to make some adjustments to my dosage of Cabometyx. Andy is doing research and will make a recommendation in a day or so. This is something I had to do during my 15 months with Votrient. More than once.

My scans have been set for Tuesday, May 23. This scan will tell the tale about how I respond to Cabometyx. I’m hopeful — extremely hopeful — that we’ll see significant shrinkage of the spinal tumor, enough that surgery and radiation is possible. If that is the case, we’ll be making plans for being seen by Dr. Carlos Bagley and Dr. Robert Timmerman at University of Texas Southwestern Medical Center in Dallas. This is the neurosurgical/radiation oncology team that has risen to the top of my research as the best place for us to go. Thanks to Susan Poteat for providing input into that decision.

We continue to feel like we’ve made the right choices all along this long eight-year season of cancer. I am confident that I’ll still be bitching about how long we’ve had to deal with this in 2025 when it will have been 6 years of this. From my lips to God’s ears.

As things become more clear, I’ll share them here. From the bottom of my heart, thank you for reading this blog, being concerned about my wellbeing, and for showing love and care to me and my family.

 

May 11, 2017 | Tagged With: Advent, Cabometyx, Catholic Church, Columbus Georgia, Dallas Texas, Dr. Andrew Pippas, Dr. Carlos Bagley, Dr. Robert Timmerman, Episcopal Church, flashbang, Green Season, Jill Tigner, Mother Nature, Pentecose, TKI Drugs, Tom Clancy, University of Texas Southwestern Medical Center, Votrient| Filed Under: kidney cancer, renal cell carcinoma, Uncategorized | 27 Comments

Nothing Happens Until a Sale is Made

Knox-pestThis is a sales success story — one I can’t wait to tell. It needs be told because the sales transaction is at the epicenter of what keeps our world on its axis. That spark, sizzling on dry tinder, catches up and a nice little fire just happens right in front of your face. The sales guy knows exactly what to say. He’s sharp. He’s got kind eyes and gets a meaningful conversation underway without delay. His time is valuable and he acknowledges that ours is, too.

This was a perfectly executed three-minute cold call. During my career I’ve made so many of those kinds of calls and they are mighty difficult — unless you’re Rod Spain. Rod is an account executive at Knox Pest Control, a new Columbus and the Valley advertiser.

Rod had just a few moments to get me and I’m not an easy get. Ask Jill or anyone else at 214 10th Street. I apparently have a sold case of Resting Bitch Face. That, and a sharp dismissal of a different, much less well-executed cold call have been witnessed by most of my office mates. Sometimes it is abrupt, but I figure that’s better than dancing around when the thing isn’t going to go anywhere anyway.

Then came Rod.

He said just the right things. I’ll admit I provided moist, dark soil on which a seed could land, but he was smart to recognize a glimmer of need in my eyes. In an instant, he was back in my office, sitting in a chair opposite my desk and my chair. In short order, he determined that I am related by marriage to my brother-in-law, Marshall Myers, and I felt like we made a professional connection. He has a great gift and the cool thing is that gift springs from his goodness. I like to be around people who have a light that comes from somewhere down deep. Those people are rare.

We have commercial real estate in downtown Columbus and it is my responsibility to keep it running by handling leases, rent payments and arranging for repairs and maintenance on buildings and landscapes. Termite inspections and treatments are part of that, and Rod Spain sells termite services for a local company. Not only did I get a fair price for the services that would be rendered, we were able to do business with a locally-owned company and we got to meet Rod Spain.

Once we signed the agreement, Rod gave us a clear outline of his timeline for the services they’d provide. He communicated with me often and Knox showed up on time and got it done. I left that sales experience with a sense that good business was done and I got a bonus by an inspiring salesman.

We’re in the middle of a financial transaction that involves a piece of property we own in Phenix City and we need a termite letter on that property as a part of the transaction. Guess who I called? Yep.

Rod doesn’t handle Phenix City accounts, so he passed me off to the right guy. The right guy didn’t call me, and several days later I reached back out to Rod, because I know him to be laser focused on my experience as a customer of Knox Pest Control. “I will make sure this gets done,” he said. I reminded him of my extremely short deadline and he came by our office today with the results of his inspection, less than 24 hours after he made his commitment to get the job done.

Turns out we have a small issue that needs attention and Rod has made another promise to get it done within our time constraints. Rod, I hope you get the chance to read this. Your commitment to excellence in your chosen profession and the stellar representation of your employer have secured my future loyalty to Knox Pest Control.

Nothing happens until a sale is made.

 

May 13, 2016 | Tagged With: Columbus and the Valley magazine, Columbus Georgia, Jill Tigner, Knox Pest Control, Phenix City Alabama, Resting Bitch Face, Rod Spain, sales, termites| Filed Under: Uncategorized | 1 Comment

Action Nashville

As I looked around the Nashville, Tenn. rooms, buses and sidewalks we inhabited yesterday, something struck me: We are an interesting group. From twenty-somethings to those with white hair on the fringes of their pates like me. Among us are bankers, insurance people, journalists, public servants, politicians, public relations professionals, arts mavens, real estate folks, retailers, shopkeepers, restauranteurs — you get the idea. We’re a walking, intellectually-seething microcosm of of Greater Columbus, Georgia, all willing to give up three full days of our business lives and even willing to pay for the opportunity to do it.

This is exactly what a Chicago attorney, Paul P. Harris, was aiming for when on February 23, 1905 his passion for bringing together the best and brightest of his day resulted in the creation of the Rotary Club of Chicago. Today, the 1.2 million-member organization has, among many other things, effectively wiped polio from the map. They’ve done it by carefully selecting a multidisciplinary group of thinkers and problem solvers to bring to bear their minds and energy to solve the problems of the day.

Back to Nashville. Yesterday, we sat in groups while the people responsible for implementing and successfully delivering Nashville’s stellar growth and reputation were paraded before us to tell their stories of their best practices. The Nashville of today was birthed from a Wall Street Journal article many years ago that basically said Nashville didn’t have what it took to be a great Southern city. A series of meetings from a wide swath of the Nashvillians of that day decided they were going to do something about that sad WSJ commentary. Now, six five-year plans later, Nashville is at or near the top in every indicator category and couldn’t possibly be doing more to hone her shiny Music City moniker. So far, the people who have addressed us have all hit on the same talking points. This jewel of a city has been carefully constructed by thoughtful, engaged citizens whose plans are being manifested in what we are seeing on this trip.

During the past few weeks, I have been fortunate to have attended discussions about the creation of a minimum grid of roads and paths to connect the neighborhoods of Columbus. One of the slides NYC’s Gehl Studios showed compared Columbus’ growth over the past few decades with cities like Huntsville, Ala., Savannah, Ga., Athens, Ga. and a couple of others I can’t recall as I sit here in my hotel room at 5 a.m. writing this post. Columbus’ trend line is flat among a sea of rising lines representing these other cities.

Then yesterday, during Bill Murphy’s presentation about the Columbus Chamber’s Regional Prosperity Initiative, there was that shocking statistic: Columbus’s net jobs gain over the past 35 years is ZERO. Look around. We’ve got Aflac, TSYS, Synovus and all the power those huge corporations have brought to our city. Yet, and despite of all the fabulous strides we’ve made on the riverfront, all the streetscape renovations, all the retail, new restaurants that have come online, we haven’t made any headway in 35 years!

What is or are the reasons? Is it poverty? Is it our tax structure? That we’re not on a major interstate highway? Have we been spending too much time trying to lure the wrong business entities? Is a great local retailer on Broadway worth more than we think to our local economy? Is that honking, huge big-box retailer spewing smoke and mirrors that make us think they’re more important to our city than they really are?

The high-energy buzz that I have around me on this trip to Nashville says this group and the spinoffs that will occur when we get back home tells me this group wants to know the answers to these and other questions. I’m so excited to be a part of it. #iclcnashville #iclc2015

 

 

October 1, 2015 | Tagged With: #iclc2015, #iclcnashville, Bill Murphy, Columbus Georgia, Gehl Studios, Greater Columbus Georgia Chamber of Commerce, Huntsville AL, Nashville, Paul Harris, Rotary, Rotary Club of Columbus Georgia| Filed Under: Uncategorized | 6 Comments

RiverTown is a Must See

Allen Levi is bringing back a three-night run of RiverTown to our lovely Springer Theater on March 24, 25 and 26. The music from this album is, hands down, some of my favorite music. It reminds me what makes our bend in the river such a great place to live and rear our children. The lyrics are sweet, the music is hopeful and the fact that it is about my favorite place on earth makes these tunes so special to me. “Pieces of the Past” is probably my favorite song of the bunch. I’m listening to the album now and I’m flooded with sweet memories of my childhood. I won’t miss this show and if you love this community as much as I do, you need to get your tickets now. We need to pack the Springer for this show. Bring some people who are new to town. The show will jump start what I know will become their lifetime love of the Chattahoochee Valley.

My brother and I grew up on Britt David Road right at the end of the exit from the old Columbus airport. I spent hundreds of hours lying on my back in thigh high fields of red clover on the expansive front lawn of the airport with the earth end of a piece of kite string wound around my fingers. We shagged golf balls out in that field with our baseball gloves, hot off the face of my father’s driver. We’d snag them out of the air until his shag bag was empty and Eric and I would take turns running a bag full of balls back so dad could send them back our way.

We camped out in the woods that are now Windsor Park and we spent so many Saturday mornings up in the control tower with the men who guided in the tail dragging Southern Airways DC-3s. My daddy gave me an intense love for soldiers and the airport is where we met many of them during my childhood years. Dad would walk through the airport and find people who weren’t able to make it home for the holidays. They had dinner with us. He’d figure out which ones didn’t have cab fare and he’d load up our car with the young soldiers and take them out to Ft. Benning. Allen’s song, “Last Part of America” makes me cry every time I hear it. If Allen includes that song in his show, I’ll be the guy wiping his eyes with a handkerchief. Just ignore me, but do not miss this show!

Here is a link to the Springer Opera House website: http://www.springeroperahouse.org/plaintext/home/home.aspx

The link to purchase tickets is on that home page. Ticket prices range from $15 – $25 and I hope you’ll round up some friends and go. The last time this show was performed in town was in the late 90s and I’m one who thinks it should be an annual event. Keep in mind that I have never seen the show. I am basing my strong feelings on just the music that I hear coming out of my Macbook Pro laptop right now. I am really looking forward to seeing and hearing Allen Levi tell the good stories of my hometown.

February 20, 2011 | Tagged With: Allen Levi, Britt David Road, Chattahoochee Valley, Columbus Georgia, Columbus Metropolitan Airport, DC-3, Ft. Benning, John Venable, RiverTown, Southern Airways, Springer Opera House| Filed Under: Uncategorized | 2 Comments

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