Columbus and the Valley

Voice of the Valley

A Columbus and the Valley Magazine Blog

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!

 

 

Hope Is In the House

 

We said goodbye to John Robertson Kinnett at First Presbyterian Church this morning. That beautiful room was filled by a great collection of people and I particularly enjoyed seeing Claire Kinnett Tate, Bright Kinnett Wright, Frazer Kinnett, Jean Kinnett Oliver, John Robertson (“Bob”) Kinnett, III, and Josephine (“Jodie”) Kinnett Klumpenhower and their cadre of young people, all with that very strong family resemblance. My memories of the Kinnett family were when the six siblings were small children. My father worked for many years at Kinnett Dairies and because of the Kinnett’s emphasis on family, I got some priceless time with my father during many hot summers in rural Georgia. My daddy drove ice cream trucks and milk trucks through the sun blanched region around Columbus.

He would nudge me out of a deep sleep in the early morning, well before the sun and we’d go to breakfast. The smell of coffee and bacon, a cold glass of Kinnett Dairies milk and hours and miles in an open-sided dairy truck, weaving a trail in and out of shady gravel parking lots, and under the boughs of giant oaks. Dad would read the order sheet, and we’d spring out of the truck and into the frosty cloud of supercooled air coming through from a place every boy should get the chance to explore.

He taught me how to pull the orders, stack them on the hand truck and then came the best part. I got to watch him interact with all kinds of people. Large and small grocery store owners and proprietors, convenience stores clerks, school cafeteria workers, restauranteurs and every kind of curb and vegetable market clerk and he never met a stranger. He didn’t know any of their names, but he could and did tell me stories about them. Then, we’d roll back into the dairy in the afternoon and go up the stairs and into the business office, where my left handed dad would absolutely smoke a manual calculator and hand-draw big gothic looking letters and numbers as he checked up for the route. He always took great pride in his job at the dairy and I am thankful for the strong influence John Kinnett had on my family’s sense of family.

This morning, my mom, Ann, met me at the Columbus and the Valley offices and we walked to the church. After the visitation, we walked on north and west from the church to Uptown Vietnam Cuisine where I successfully connected someone I love to something I love. The wonton soup there has coaxed my taste buds into full flower and it was fun watching mom enjoy the dish so much while being frustrated by how best to deliver it to her mouth. You know from the way that soup smells that it is hardwired to hit the ahh center of your brain. Everyone has their own style of eating it. I like to watch people who have obviously spent their entire lives using chopsticks. Mom and I had a nice day together and it is pretty special being as old I am and being able to share a meal and several hours with the person who brought you into the world almost 65 years ago.

My surgical wounds are healing, the antibiotic is returning health to my gut and reports from my latest scans and lab work are encouraging. My kidney function is high, the holes in my spine that kidney cancer had devoured are being replaced by recalcified bone and I appear to be on a trajectory to be able to have surgical/radiological intervention to stabilize my spine and be returned at some point to more robust health.

I’ve been used to hearing bad news for the whole of my recent history — Eight. And. A. Half. Years. Interspersed in these months there are pockets where, despite your physical limitations, you get delicious slices of the summer peach of the cancer timeline. No drugs. Diminished side effects. The total eclipsing of your newest, clothes horse, food-centered normal over the hot, angry ogre of chronic disease, just at that moment when you can take off the protective glasses and bask in the golden glow of a 360-degree sunset. I feel total, open-armed thankfulness for this day and a warmth radiating from my bones that only hope can ignite. Fear is cold, but easily driven out when hope is in the house.

 

Find Your Music

I’m going to be okay because music has come back into my life. Until tonight I haven’t felt the hair stand up on my neck when I was listening to music. I haven’t been listening to music. My rhythms were not tight drum backbeats, they were of the sinus variety. Medical, not melodic with hospital smells stamping their not-soon-to-be-forgotten signature on what were formerly inoffensive packaged goods. There are soap and tissue smells that will instantly cause my gorge to rise. It takes months for that to go away. No matter how great the care, hospital stays just set a body back.

Riding in my car into a low sun with the volume at 49 makes me feel alive and hopeful. That I still remember every drum lick and lyric anchors me in the here and feels like order. I carefully apply a news governor on content. My life is about magical experiences with people I love and I am not affected a whit by anything ignorant or mean. I won’t let it rain on this blue sky. I only have time for joy.

Listen to me. It is much easier to be happy under these conditions. If you choose to do it another way, go ahead on, but don’t turn around and expect to see me standing knee deep in that shit with you.

I reconnected with a friend today. He’s got a friend with a fresh diagnosis. The fear of that news can be crippling and how you respond to it can have spectacular outcomes in your life. I do what I can every day to try to squeeze my spectacular into a north facing green arrow. A righteous Fibonacci Queen buy trigger. Apparently music comes with the trigger. I want that young man to know cancer will give you more than it takes. If you’re lucky. And, young brother, I’m living proof that you can make your own luck. But you have to learn to want it. Look into the eyes of the person you love the most and vow to do what makes you the happiest for as long as you’ve got to do it. Then put one foot in front of the other until you walk yourself into a place where smiles take zero effort.

Find your music. Look for joy. It is blatant when you’re looking for it. I’m seeing it almost on demand. We put our next magazine to bed today. Next stop is a monster Heidelberg press under the Duck’s steady gaze. I can’t wait for you to see it.

The Eagles are coming to Atlanta. Vince Gill in that mix has got to be unforgettable.

 

 

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!

 

I’m Still Here

Jill and I met with Dr. Pippas and my latest CT scans this week. We heard some good news: looks like my scans are stable. And, we heard some scary news: my colon and my gallbladder are both extremely inflamed, painful and uncomfortable, probably due to several months of daily 60-milligram doses of Cabometyx, a powerful tyrosine kinase inhibitor cancer drug. I am weighing in at around 180 pounds, 80 pounds short of where I was when I took my first dose. I can’t eat. I throw up several times every day. Diarrhea is a daily occurrence and I am scared to death that the tumor in my spine is going to bust loose on me again and do what it can to take my legs from me.

So, that’s what is going on in my world. It is frightening as hell and I wouldn’t wish this on my worst enemy. But, you know me, and my attitude is strong. I pray every day for healing for myself and others who are in this damned boat with me. Specifically, this is what I’m praying for: I need this tumor to get small enough to make the way clear for me to have spine stabilizing surgery and also radiation. I’m sending these latest scans to Dallas, Tex. to the University of Texas Southwestern Medical Center to be reviewed by a surgery/radiation team. I’m also sending them to Munich, Germany to Dr. Michael Kaehler, a renowned kidney cancer surgeon who has taken me on — thanks be to God.

I haven’t posted in quite a while, so I am letting all my readers know that I’m still kicking. I hope you will give me some room as I try to work my way through these latest trials and tribulations. My zest for communication has worn thin. I know it will return, and I hope you’ll join me when it does.