Columbus and the Valley

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.

 

 

 

Angels Are Part of the Magic, and Today I Need the Magic

If you’ve never had cancer, you likely won’t be able to appreciate why this day in early February was so special for me. If you’re lucky, you get to live with cancer. And, if you’ve been one of the lucky ones, you’re living among angels, because angels are part of the magic, they make the stars align, they put you in front of just the right physicians and caregivers, maybe the only ones who know what to do to help you live.

Several weeks ago, Jill and I met one of our angels.

If you know us, you know our story. If you’re new to my blog, there are a couple hundred thousand words here going back to June 10, 2009 when I had my first encounter with renal cell carcinoma (kidney cancer or RCC). Very shortly after my diagnosis, Susan Poteat reached out to me after I posted a plea for help on an email LISTSERV named acor.org, now called smartpatients.com. I had done enough research to know this cancer was rare and dangerous and I desperately wanted information that might help me live.

Susan is a locum tenens medical physicist. Locum tenens means “to hold the place for, to substitute for.” So, she travels to a clinic or hospital that has a medical physicist shortage for one reason or another and fills in for them on a contract basis until the person returns or the job is filled. She works in radiation oncology, with oncologists, surgeons and technicians watching over the numbers, radiation dosages, the patients internal organs, metabolic rates and blood flow.

In addition to her sparkling intelligence, she has a servant’s heart for people with RCC because her medical physicist husband, Gary, is also a renal cell cancer patient. Susan has been there for me more times than I can count over the past eight years since cancer came. For eight years, we have talked on the phone, emailed and texted, with information flowing in only one direction — toward me. We have talked when I was afraid I was going to die and when I was flying high from a stint of “normal,” those days when cancer seemed to be leaving me alone. She has been a great listener, a steady source of good, useful information and a beacon of light during days that were sometimes so dark I couldn’t see the end of my nose.

I started writing this post a few weeks ago, the day after we met Susan and Gary for lunch here in Columbus during our visit. I put it aside, to come back to and information I just received today made me get this back out and finish the post. Because today, I found out that I have another metastasis in my spine. That is really all I know at this point. More questions than answers. Is the spine the only place where I have active disease? Is it is the same place as last time? What about my lungs? My brain? Are there mets there, too? Do I go back to systemic therapy? Is radiation alone going to do it, or can I even have more radiation at the site where there is active disease?

I’ll know the answers to all these questions and many more when I have definitive CT and bone scans. And, when I get those answers, I’ll be posting about what we found. I’ve known for eight years that there was a high probability that this day would come. Knowing the day has arrived is still just as shocking as I thought it might be. Not so much fear, at this point. Just anger, and that might not be a bad thing. I know all the prayers and support we’ve received have served us well these past eight years, and with this post, I’m looking you right in the eyes and asking for their continuance.

We will, once we know what we’re dealing with, run straight at it. That’s the way we roll around here. I’m expecting this to be another milestone which we’ll conquer. In the meantime, I’m going to be busy staying busy.

 

Music Leads the Way During Christmas Season

Music is a huge part of my life. Always has been. At almost 64 years of age, I find music is the frame upon which I hang the events of my life. I might not remember that the event happened in 1989, but I remember with startling clarity hearing Rick James’ “Superfreak” in my ears, sitting on the ski lift next to Harold Hampton as we laughed about a sign encouraging people to attend a “Diamond Cutter” workshop that afternoon. That was back in the days when I could’ve hosted a diamond cutter workshop several times a day. (Women friends, ask your husband why this is something to celebrate.)

Through the highs and lows of my life, music was there for solace or a lyrical high five. I spend a lot of time in the car by myself, as Jill and I take separate cars to work every day. I’m in the driver’s seat with my thoughts and my music — LOUD — sometime with gooseflesh on my arms, and sometime with tears dropping off my chin onto my shirt. The result is that the music firmly grounds me onto that place in my memory when that song was playing and something significant was going on. The slice of time is front and center and whatever emotion was present then is present here again at 70 miles-per-hour and it is a remarkable treasure, there in that fleeting moment and then gone, until I play that song again.

In this Christmas season, now my third one on truly gifted time — time that medical statisticians said I wouldn’t get — I’m awash in gratefulness, and trying desperately not to give in to the fear that still haunts me every day.  Will it come back? Will it come for me again? How can I ever go back again to that pain, to that place where everything tastes like aluminum foil, where sleep comes in fits and starts and fear is overwhelming? 

I have attempted to try to write what this feels like: Me getting my life back while so many others are still in their dark place, having to undergo so many procedures, scans, needle sticks, tests and not being sure of their next day. Yes, I still have my share of all those awful things, but mine are sauced with a healthy helping of real hope. I think this is survivor guilt, just like a soldier feels when he comes home from war while others died on the field of battle. Part of me wants to celebrate, part of me wants to sit quietly in shame as my brothers and sisters continue to wither from their marching disease processes.

Despite my lingering PTSD, and the apparently permanent fear and loathing I have had tattooed onto my brain, I am so sincerely thankful for all that I have, mostly for my family and friends and for my cancer relationships. I walk through each day with the eyes of a child, soaking in beauty and goodness in large measure. My heart sings with gratitude, led by the songs on my radio. So, listen to my songs of 2016 in this Spotify playlist, and think of every person you know who needs to be encouraged, to feel love, to find warmth, to be hugged, to be fed.

Hear my gratitude for so many who have encouraged me, loved me, hugged me and fed me. Merry Christmas.

Downtown Columbus Didn’t Disappoint

Saturday night in downtown Columbus was a perfect night for me. We have been trying for what seems like years to get dear friends, Doctors Janie and Danny King from Eufaula, Ala., to shoehorn us into their busy, busy schedules and come to Columbus for an evening of dinner and entertainment. These guys are really busy with their internal medicine family practice and a robust list of Eufaula social obligations. We love being with them and Saturday night was a perfect storm of perfect for me.

Even though they have been to Columbus many times over the years, they aren’t familiar with Columbus neighborhoods and many of the newest amenities that are coming online in our fair city. Until Saturday, Danny hasn’t even seen the inside of the Bill Heard Theatre at RiverCenter for the Performing Arts. My absolutely favorite thing to do is to get my hands on someone who isn’t familiar with Columbus. I get to regale them with stories of the people and places of our area, the public/private partnerships that have shaped our landscape, our river, the beauty of MidTown, the new west bank jewels in Phenix City, new restaurants, the longest continually-performing symphony orchestra in America, our hotels and venues, downtown shopping and the promise of many more great things to come.

The Piano Men show with our Columbus Symphony Orchestra was so damn good. I sang along and chair danced my way through the two and a half hour long show. The CSO provided the perfect backdrop to the timeless music of Billy Joel and Elton John, performed flawlessly by a Canadian dude, a couple of side men and a local sax player they added to the show for a few numbers. If CSO conductor George Del Gobbo was put off by having to play an evening of pop music, he didn’t show it. He hammed it up with the Piano Men performers and seemed to be having a great time. Doing shows like this makes our symphony so much more approachable by folks that aren’t so much into classical symphonic music and I think these shows help people connect with this hugely important cultural resource.

We ran into Chamber President and Chief Executive Officer Brian Anderson, his wife Heather and his sister, Whitney, from Charleston, S.C. twice during the evening. They had as much fun as we did, it seems, despite last night’s chilly and blustery weather. I was a little bit disappointed that the streets of downtown weren’t quite as busy as a usual Saturday night. Broadway is a vibrant, exciting place to be on most weekends.

Way to go, Columbus! Our Eufaula friends were wowed by what they saw here on Saturday. I’m sure this is a scenario shared by many who come here for a visit and fall in love with this bend in the river. I’d call this a Chamber of Commerce kind of night. Wouldn’t you, Brian?

Just Shut Up and Park!

I had the pleasure of attending a brainstorming session put on by Uptown Columbus to spin ideas on how to make our incredible downtown even better. My breakout group discussed marketing and communication. Oddly enough, the subject of parking in downtown kept bubbling up. It seems that the perception is that we don’t have enough parking in the downtown area.

Last night I had dinner at Chili Thai with an old friend from Hardaway High School. Glenn Dyer, who owns the restaurant with his wife,Rachanee Wareesri, came by our table with his bitch du jour (if you know Glenn, you’ll so get this). He started talking about how a lack of downtown parking had negatively affected his business. He specifically mentioned a party of 20 who got up and left because half of their party had not been able to find a parking place.

Waaa!

I looked up at him with a mouthful of those incomparable noodles and said, “Were they a bunch of big, fat old people?” He looked at me like I had a horn growing out of my head, and told me that no, they were young, active, healthy-looking people. I’m really confused by this. There is no parking problem downtown! What there is is an apparent unwillingness by our citizenry to grab a cherry parking spot in one of our many downtown parking garages and walk a couple of blocks to their destination.

Are you ready for the real parking story? Here it is: There are 1,616 on-street parking spaces from Bay Avenue to 3rd Avenue and from 9th Street to 13th Street in the city center. And, there are approximately 2,000 public spaces available in the Trade Center, RiverCenter, Front Avenue (W. C. Bradley), CB&T and Synovus parking decks. There is parking galore in downtown Columbus, Georgia! You have just got to be willing to get out and walk for a couple of blocks. A couple of blocks is a fun, healthful walk in our beautiful city. In any big city and in most small cities, parking is a real, real issue.

Several weeks ago, two of our sons, their mates and I went out to Denver for a long weekend. We went out every night and damn, that’s a town with a parking problem! Every little neighborhood has storefronts that are filled with galleries, shops, restaurants and bars and the only parking that is available is on-street parking and there’s very little of that. You’ve got to park and hump your way to your destination and when you get there, there is a crowd and a line to get in. Denver is positively alive and squirming with fun things to see and do, and people out there just accept that finding an up-close parking space is more difficult than winning the lottery. So, you park where you can and you walk. And walk. And walk, to get there.

Downtown Columbus is on a roll. We’re on the way to having a place that I’ve been dreaming about. Bustling with stellar, locally-owned restaurants supplied by local farmers, fun places to hang out, drink (responsibly) and party, interesting entertainment venues and museums and a diversity of languages, cultures and faces. All of this good stuff, surrounded by enough parking (if you’re not a lazy slob) to choke a horse. (Before you start throwing rocks at me, there is every opportunity, if you’re elderly, disabled or otherwise encumbered, to have a handicapped space available or to have someone — a purple people greeter — assist you with packages or a heavy load).

Growing takes guts and commitment. Part of that growth is changing our collective attitude about parking at the door of your destination. Those days are over. And well, they should be. Because next door, down the street and across the street from your destination are a bunch of other really cool places to see and things to do. This is the main reason why mainstreets are so fine. Unlike the concrete jungles of the suburbs, our lovely downtown is a cool, fun place to just BE. Get out and walk around, greet the people you see, get a plate of those awesome Drunken Noodles and revel in the goodness of one of our greatest public spaces.

Right in the middle of the writing of this blog post, Jill and I had the pleasure of an hour-long meeting Brian Anderson, our new Chamber of Commerce president and CEO. We have an incredible Chamber and I believe Brian has the experience and vision to lead by partnering with the area’s large corporations and by once and for all showing the smaller companies, which make up 80% of our community’s businesses, that a strong Chamber can create a rising tide that will allow us all to float upward. We had a refreshing, energetic conversation. Just the way I like it!