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.