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.

 

 

 

Time to Grab the Go Bag

I’ve been quiet here since August. I know you’ve noticed.

I need to talk and I hope you’ll listen.

We’re at the end of another holiday season “they” said I wouldn’t get, another birthday just passed they said I’d never see. These moments would have knocked me down when I was a cancer boy. When I toddled through the early days — a wobbly-legged cancer foal — one of these big, important days would come around and I’d fairly spend the day all weepy, with a mind that just wouldn’t stand up on its own. I drew such incredible strength then, as I do today, from Jill’s touch, from the ever-present and ever-strong cloud of witnesses who have walked with us every step of the way. As I look at my reflection today, I am strong in ways and in places where I didn’t even know I had a place.

Strength is good. Especially now.

When cancer comes for you, you have to grab everything you can carry, throw on some clothes and snatch your go bag off the table as you fly out the door. You’ve gotta be light on your feet. Being a cancer patient is a full-time job. It requires study. Although I understand that some patients don’t want to have an opinion about their condition or care, it is my deep conviction that only a fool would relegate 100% of the responsibility for their condition and care to any single other person, even a well-trained doctor. To have a shot at surviving, a patient must be proficient in math, be a good negotiator, be organized and be able to speak insurance. You also need a patient, loving mate and a faith family.

What you need more than anything else is a keen sense of your own body, a strong curiosity about science and medicine and a snarling — almost rabid — ferocity to live.

I recently lost a friend who possessed every one of the qualities of a stellar cancer patient, but who still lost her fight. To know that you can be in the game, in as good shape as possible, rested, nourished, aware and yet still have something unforeseen take you down, that, ladies and gentlemen is a solid testimony for living every day like you are dying.

We leave in a few days on another medical vacation because I’m one of the lucky ones. One of the very lucky few kidney cancer patients who has cobbled together a way to “live” with it. In a recent visit with Dr. Andy Pippas, we talked about all the decisions we’ve made together. About how hard some of them were, and about how fortunate we’ve been to have made mostly the right calls over this almost nine years of living with cancer.

I have an astonishing network. Astonishing because of the wonder, through social media and new technology, of having so many robust relationships with people who I have never met face to face. The physician Jill and I are going out to M. D. Anderson Cancer Center to meet was chosen for our case by an angel doctor who took an interest in us. Professor Dr. Michael Staehler has never met me, yet he’s reviewed my entire medical history with RCC and has discussed my case with with Dr. Lawrence Rhines at M. D. Anderson Cancer Center. Dr. Staehler runs one of the world’s premiere kidney cancer clinics in Munich, Germany and he took an interest in my case because one of our kidney cancer mentors asked him to help us.

We are hopeful that Cabometyx has shrunk the tumor in my spine enough to allow a skilled neurosurgical team to remove the tumor and repair the damage caused by kidney cancer. It is my most prayerful hope that we’ll get this kind of feedback from Dr. Rhines, after he has a chance to meet me, and review whatever tests he feels he needs to make an educated diagnosis of the situation.

If you’ve been a follower of this blog, you know that in times of trouble I write to help get myself through it. So, with trouble ahead they’ll likely be a few thousand words to go along with it. I ask that you also continue to pray for all of your friends, and not just those of us with a dangerous illness. Part of the reason I write is to give folks a glimpse of what it is like to have to negotiate the dark waters of a cancer diagnosis. I hope that you’ve also been able to see the beauty that lies in the clear fact that if you’re open to love and a connection with your fellow life travelers, almost indescribable joy usually follows the pain. I’ve found that when I focus too much on the pain, the joy passes me by.

I have an MRI scan scheduled for 6:15 p.m. CST on Wednesday and we meet with Dr. Rhines on 1/11 at 11 a.m. Depending on what we hear, we’ll at least have a solid idea about how effectively I’m responding to Cabo and whether we’re still on a good track to mitigate this issues in my spine.

One of the attributes of a good cancer patient is a chameleon-like ability to remake yourself each time your physical being forces you to become something different. I am unable to do anything physical right now, so I have spent the past eight months learning how to trade stock options.

I have found a local teacher, someone who has taught me how to read stock charts, about the Fibonacci sequence and how it relates to stock price fluctuations, about how to establish my own trading rules and follow them and how to utilize the stocks that Jill and I already have in our Roth and traditional IRAs to, with relatively low risk buy and sell puts and calls to make additional income as we near retirement.

I’m not going to say much more about stock options right now but trust me, there is much, much more coming from me on this topic. There is a limit on how much of your assets you can place into your Individual Retirement Account each year. But there is no limit on how much you can earn on the money you’ve put there. I have found a better way to grow that money in our lives. And, because only a tiny percentage of the people I’ve engaged in conversation about this subject during the past eight months knew anything about it, I’m going to make it my mission over the near future to make sure everyone within the sound of my voice and who is interested, gets a good, solid education on what surely must be one of the financial world’s most closely-guarded skill sets.

If you think you’re going to be interested in hearing more about how to trade stock options to generate additional income go ahead and pick up a copy of the book, “Understanding Options,” by Michael Sincere and read it. I was asked to read the book before I attended a two-day weekend training class here in Columbus to learn the basics of options trading. Prepare to be challenged, and intellectually stimulated!

 

 

My Flesh and Blood Plays Red Rocks Tonight

The surely epic bucket list item I won’t get the chance to check off today has finally lost enough pain for me to talk about it. Tonight I would have stood on hallowed concert ground in Morrison, CO with all four of our sons and Michael’s wife, Janice Rice Venable, one of my dearest childhood friends, Craig Hospital Occupational Therapist Perry Ann Williams, and her husband retired landscape architect, Keith Gartin; Principal Architect and Senior Partner Sam Andras, of 2WR Architects, his spouse, educator Victoria Andras, and a host of their friends, band mates, lighting and sound professionals and advisors.

Today we all would have watched our son, Adam Venable/Obeah, perform with Daily Bread as they open for Pretty Lights on the Red Rocks stage. If you know about Red Rocks, you can likely conjure my deep loss for having to miss it tonight. If you don’t know Red Rocks, think Carnegie Hall and and I’ll conjure my deep loss for having to miss this tonight. I’ve had to unwind a 12-day walkabout while in the midst of enduring 2 surgeries, a CT scan, an MRI, some sweet Jesus pain and chronic nausea and vomiting. Thanks to my medical team, everything on that list has been fixed or alleviated. But without time on my side and the sensibility of putting the importance of my health first, tonight, my best hope is to be able to live stream the show, if they can figure how to send it.

Adam, I hope you leave a raw, bloody piece of your soul on that important stage tonight. That it comes from a place so deep that it shocks people to know you kept things like that in there. You have worked hard for this and you deserve your hard work and dedication to make an audience swoon. I will be joined with your spirit in the Colorado breeze. I could not possibly be prouder of you, son, and your brothers and that sold out show will watch the virtual walls come down in the foothills tonight. Now go out there and kill!

 

PET CT Update

Any time a cancer patient has a scan that doesn’t see active disease it is a cause for celebration. Because kidney cancer sometimes doesn’t take up the glucose used in the PET CT scan like I had today, it isn’t always the best scan to use alone for kidney cancer patients. In these case of the PET CT scan I had today, it was used in addition to a regular CT scan with contrast, which is the one I had last week. Dr. Pippas hoped it would shed more light on the results of the CT scan from last Wednesday.

The good news is the scan today showed no active disease, which can NOT be a bad thing! We are grateful for this news, but we are also cautious. I still need another spine surgery, I think without doubt. But what about the tumor in my spine? At the very least, we have further confirmation this cancer is lazy. Although it is incurable, it is giving me a chance.

What we will do with this chance is left to be seen. I have a lot of research to do now. We have to get the best possible advice from as many smart people as I can get to weigh in on my difficult case. Then we have to make a decision about next next steps. What I hope for is to be able to have the damage the cancer has done in my spine repaired and to come out of that surgery with a structurally sound back.

I am also hopeful to be able to tolerate the side effects being delivered by the Cabometyx and not develop liver toxicity, which will force me off the drug. Although I’m suffering physically from the effects of the drug, my constitution is strong, and I wanted y’all to know we’ve heard some good news today.

The lesson in this for kidney cancer patients is clear: Just like Winston Churchill says, “never, never, never give up.” Having cancer is a full time job. And the pay sucks.

Tales from the Food Desert

I am a seasoned cancer patient. Something I never wanted to be. I am able to withstand painful needle sticks without fear. Something I never wanted to be able to do. I am engaged in a fight to live and to enjoy a robust life. Something I never wanted to have to deal with.

I feel the urge to talk about what I’m feeling today. I’m not phishing for pity, just telling it like it is. Sometimes it helps me in a big way to see a real account of the incredible privilege it is to be able to live with cancer, as opposed to it taking you down quickly. Without any doubt, the pain and suffering with which I, and therefore my family and friends, deal with because of this disease and the powerful medications I take, the gift of living that I’ve been afforded is a great victory.

So, let’s talk about positives: If you’re following, you know I had a CT with contrast of chest, abdomen and pelvis yesterday. The radiologist read the scan and so did Dr. Andrew Pippas. They read the scan. I read the report. We are all a bit flummoxed about this disease process. So, Dr. Pippas has ordered a PET CT, which is a nuclear scan to detect active disease. That should give my medical team enough additional information to be able to make recommendations about future treatment.

I’ll have the PET CT this Friday, May 26 at 1:45. What we hope to see is that the areas where we have concerns — my spine from L1-L3 and the spinal canal, and my remaining kidney which has a lesion that we’ve watched for 8 years, are not exhibiting active disease. That place on my remaining kidney is changing, based on the introduction of Cabozantinib, the drug I’ve been taking for about seven weeks. Changing into what, we don’t know at the moment.

I’ll share what we learn from the PET CT over the coming weekend. I hope we’ll have a more definite idea of what is happening and what we’re going to do about it.

My biggest issue in the quality of life department is that I’m hoarse as hell. 20% of the people who take CABO get extreme hoarseness as a side effect. I definitely am one of those 20%. Also, I’m dealing with some hand/foot syndrome. I have blisters on both of my feet and walking is difficult and painful. I’ve lost right at 60 pounds now and eating continues to be challenging. Also, my blood pressure is elevated and we’re concerned about that. High blood pressure is very dangerous to me because I only have the one kidney. This is a tough road we’re on right now.

Having all of my readers with us in spirit along the way has been a wonderful gift to Jill and me. I hope I can keep on track with posts as information becomes available. Thank you for your concerns. Thank you for your prayers. Thank you for your kindnesses. We could not be more grateful for all of you.