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!
This post is a stream of consciousness update. Please excuse the lack of my usual attention to the conventions of acceptable language and grammar. I’m banging this one out. Dr. Pippas walked into our exam room this afternoon at about a quarter ’til 6 and we got down to business. I think today was our longest clinical conversation of the entire 8 years of our doctor patient relationship. This brilliant, good man has never disappointed me. He called us late last night with the sole purpose of giving us a night of good rest in advance of our meeting today. He knew a word from him and the better-than-we-thought-it-would-be news about my latest wrasslin’ match with kidney cancer.
We talked for over 40 minutes, not rushed, open to our questions about what we’re dealing with, what courses of action we could see coming, how to beat it again. His usual greeting, a pitch-ascending, “Michael” then he tips his head back, engaging his bifocals to get a sharp look into my eyes. He gets right in there, knowing the eyes are the window to one’s soul. I answered back, “Andrew,” and thanked him for being the kind of physician who calls a worried patient after a brutal day at the office seeing no telling how many other worried people.
I know we’re special to him, too. We have overcome seemingly insurmountable odds together, to date avoiding life-altering, permanent physical debilitation. I’ve had multiple surgeries (left kidney radical nephrectomy, lymph nodes, corpectomy of L2 spinal vertebra, laminectomy (8 weeks later) from L2-L5, thyroidectomy, knee scope, 32 grays of radiation beams and countless hundreds of needle sticks, claustrophobic rides in giant metal tubes, gallons of barium, bucketsful of pharmaceuticals. Yep. I knew early that my job was to stay alive until something that can cure me comes along. Already there are many more drugs than were available in mid-May, 2009. We have choices, based on my case.
I made a decision on June 9, 2009 to write our way through this. Last time I tried to measure my writing output, I was north of 300,000 words. I tried to tell the story the way it went down. From December 5, 2010: “Back From the Snake Pit.”
I wanted to leave electronic breadcrumbs for the ones coming behind me. Kidney Cancer is a tough diagnosis. Faith in God, trust in your medical team, support from your friends, understanding creditors, a rock-solid marriage, children who tested us as parents, but who are always present, and loving, and engaged in our familyness. Those four sons possess characteristics that indicate our every prayer for them to be smart, kind men has been granted. What a blessing it has been to have spent relatively few hours of our lifetime as parents worrying that one of them had gone off the rails and were going down a bad road. Today I realized with complete clarity how much more difficult these last 8 years would have been if one or more of them had gone bad.
“Make good choices.”
My spine is being attacked by an aggressive, fast-growing renal cell carcinoma metastasis in my L1 vertebra. The screw that Dr. Michael Gorum put there on August 19, 2011 during spinal fusion surgery is now embedded in this new tumor. Regardless of what procedure/medication is used to kill the tumor, I will imminently require another spine surgery with longer hardware that can bridge up into my thoracic vertebrae in search of solid bone that will hold a screw. We haven’t met with Dr. Gorum yet, so this is our and Dr. Pippas’ discussion about what will be needed. The tumor has broken through the outer lining of the vertebra and my spine is dangerously unstable at the moment. No horseback riding he says. Don’t fall he says. Some quick decisions need to be made and we need them to be the right decisions. No pressure.
Tomorrow I’ll send several packets of information to several kidney cancer specialists for an independent review and some remarks on how they’d recommend we proceed. Thank you Dena Battle and KCCure. At this moment, I’m not sure where treatment will take place. If we can do it here, we’ll be at Midtown Medical and the John B. Amos Cancer Center. If we need to travel anywhere but outer space, we’ll be traveling. We’ll be praying for the right people to be placed in our path. At this moment, more so than at any other crossroads of my medical life, we will be in a state of complete faith, untethered, but not unhinged. Enveloped in God’s arms with an army behind us.
We’ll see Dr. P in 10 days. The plan will be in place by then. We left Andy’s office today encouraged by his soothing words, his sincere grief for our plight and his heartfelt hope, conveyed in looks, hugs and purposeful touch. I love him for what he has done for me and for our family. I still have both of my parents and I hate cancer for flipping our lives upside down. Jill’s mom, Betty Owens has had to live with losing a son, and because we have sons, I can imagine the emotions that our parents are living with. This isn’t the way it should ever be. It hurts too much. I want to live so that my when my parents leave this world, they will leave it without ever having known what losing a son feels like.
I want this post to speak to Ann and John: Thank you for giving me everything I needed to make it to today. You have given Eric and me a good name, a joyful home, the gift of your strong marriage and spiritual, financial and emotional support in good times and bad times. There will more good times. I’m sure of it.
Jill is by my side. Always. When she grabs my hand will her thumb or mine be on the outside?
Let’s go write our next chapter.
I live in Alabama and I don’t have any children in Columbus public schools. Two of our sons, Michael and Adam, graduated from Hardaway High School, so there’s that. In spite of literally not having a dog in that fight, I remain intensely interested in the health and effectiveness of our Muscogee County School District, because great schools train great future employees and leaders, both being mighty important to our region’s economic development.
After putting my news nose into the wind yesterday, I had a feeling that last night’s Muscogee County School District meeting might be one for the record books, and that I probably should attend and see for myself what I have heard others say about the tone of the meetings.
Jill and I went to the meeting last night. It was my first MCSD school board meeting. I hope that many more of you, whether you have children in the public schools or not, will go and watch that process some time soon.
Jill and I each said one word several times last night on the drive back to Seale and even after we were in bed. “Wow!”
Wow, I can’t believe what I saw and heard there.
Wow, I can’t believe Frank Myers referred to Superintendent Dr. David Lewis and Chief Operations and Facilities Officer David Goldberg as “You two birds.”
How Frank Myers called David Lewis a liar. Out loud — with TV cameras rolling, in spite of the sweet presentation on RESPECT delivered by four children from a local elementary school.
How Myers finger-pointed and ranted about how he was “sick and tired” of this, that and the other and threateningly engaged other members of the board and the MCSD cabinet and then immediately began Facebook postings, writing or shuffling papers, very obviously not caring to hear what the person he was dogging had to say in reply.
A strong memory from my childhood is how I felt when I went to church as a little guy. I knew I was going to leave that church every Sunday feeling depressed. Just down. I went into each Sunday morning session knowing that I was going to be beaten down. I knew I would leave feeling smaller than I did when I walked in. It was such a bad experience that, to this day, I almost get sick to my stomach when I pass by my old church building on Hamilton Road.
That is exactly how I felt as the meeting last night opened with four precious children from Allen Elementary School talking about the efforts they make in their lives to treat others with respect. It was so cute that they held up the letters R-A-O-S (just a slight, old-school technical glitch), and talked about how they SOAR when they treat their classmates with respect. There was no more respect shown from the right side of that dais for the next more than three hours.
Here’s the other thing: Jill and I have gotten to know Karen and David Lewis. They are really fine people. We’ve had dinners with them and have found out just how much they love our community. They’re planning to retire here. The other thing I learned from them is how shocked they are that there is so much anger aimed at our local school board and administration. I really don’t think they’ve ever seen anything like what is going on here.
Beyond the friendship, David Lewis has got the passion, the knowledge and the personality to take our schools to the next level. He deserves the respect of a grateful community. He does not deserve to be called a liar in a public meeting in front of his wife, his cabinet, his board and his employees.
Frank Myers is a schoolyard bully. He’s a tall, imposing guy and his lawyer swagger just accentuates the bluster. Everyone in the room with a bully is wary of him. What is he going to say or do next? When will he point that finger at me about something else he’s “sick and tired” of?
We live in the Deep South, where people are a whole lot of different things, but what we are most is kind. We are genteel. We usually treat even our worst enemy with kindness and respect. Not so at the Muscogee County School Board. Not so when big, bad Frank is in the room.
There was joy in that room last night. People brought their families to see the votes that honored their loved ones with a promotion or a new job. That joy was short-lived as we all dived back into the sludge that was our county’s school board meeting last night.
You know the feeling when you’re walking at night along a stretch of unfamiliar road in a strange town? That feeling like something bad could happen and catch you by surprise? That is exactly what that meeting felt like last night and I am profoundly sad that it has to be that way.
From what I saw and what I have read, Frank Myers wants David Lewis to go back to Florida. My clear sense also tells me that Myers, if he’s allowed to keep his seat on the board, will think exactly the same thing about the next superintendent.
That’s exactly the way all bullies act — until they get the final, verbal ass whipping they deserve. Stirring up people’s feelings just because you like to do it is no excuse for the embarrassing show that Frank Myers put on last night. I think it is safe to say the palpable tension was unhealthy for every person who was in that room.
Hoping it will get better may be too much to ask for, unless Myers’ cavalier attitude about the rules, finds him on the wrong side of one of them and an angry citizenry decides to recall him from office. I think this is a great example of how someone’s passion about something diminishes his ability to act in a civil manner. My momma wouldn’t have put up with it. I’m thinking Frank Myers, like brilliant singer/songwriter Jason Isbell in his song If it Takes a Lifetime says, has “got too far from his raising.”
What I have learned in the past 6+ years since a deadly, incurable renal cell cancer diagnosis in May, 2009 is not to lose hope. Something to hope for. Someone to love. Something to do. I’ve heard Mr. Bill Turner use these words as a prescription for a happy life. This mantra is working for me and I suspect it will for others, too. At the date of diagnosis — that Monday in my office with the door closed, close to my office speaker phone on the credenza with the person I love most in life sitting on my lap, I remember thinking how sad I would be if my life ended without getting to see our sons get married, without experiencing the joy of having a grandchild, without getting to grow old with Jill, having my parents deal with the loss of a child (no one should have to find out how that feels) and oddly, not being able to see downtown Columbus and Phenix City become something really great.
This October, our son Michael will celebrate his first year of marriage to Janice Rice. Someone to love. Hope springs eternal! All four of our sons are gainfully employed, doing what they love and self-sufficient.
I have remained hopeful, when even the act of thinking hopeful thoughts was painful. When I lost 100 pounds, due to the bone-rattling ills of taking a powerful, oral chemotherapy drug, I tried to find joy in regaining a youthful, thin body. The act of clothes-shopping became fun again. Skinny jeans.
Now that I’ve regained every single one of the 100 pounds that I lost, I realize that without the imminent fear of death at my door, I can go about trying to lose weight like a normal person. Cutting down on calories, walking and exercising when I can. Something to do. And, I can hope that skinny jeans might be in the plans for me again. Hopeful. My doctors haven’t confirmed my suspicions that the extra weight I was carrying at diagnosis might have greatly contributed to my survival. I’m working on getting the weight off, or at least stabilized, but if the worst happens, I’ll have my “winter weight” onboard to steel me against the 8th round with this damned disease.
Someone to love. Jill Tigner loves cats. One of the greatest lessons I have learned in life was taught to me by Jill: “You’ve just got to love a cat.” This past weekend, we added a beautiful Russian Blue named Gracie to our pack. Walking through PAWS Humane on Saturday, looking for that perfect spark in the eyes of so many beautiful felines, THE ONE we thought we’d choose, based on the PAWS website, didn’t make the cut. Gracie’s green eyes lit up every time I walked into her room. She bounded up the structure several times to get “eye-level” with me. A little head bump, a low, rumbling purr. All signs that she wanted us to pick her. Something to hope for.
I remain stubbornly hopeful about my body’s ability to fight off this disease. I remain stubbornly, hopelessly in love with Jill Tigner. I remain firmly plugged into life — working to tell people’s stories through our magazines. For all my brothers and sisters who are fighting cancer, find something to hope for, someone to love and something to do. Stay hopeful and positive. Wake up every day and ask yourself what you can do to deal the cancer another blow. Find a way to rob cancer of its ability to shout you down.
And, if everything feels like it is falling down around you, look into the eyes of a shelter pet, take her home and work through this thing together.
I finally figured out to easily embed media files into my blog posts. I like the way this is looking, as you can either skip the file altogether, listen to it while you read the post or come back to it later. This song is by a new folk rock/indie rock band named Dawes. The song is called “A Little Bit of Everything.” I really like it. Sort of Jackson Browne. Sort of Wallflowers. At least those great performers come to mind when I hear this new music. If you want to listen now, you know what to do.
When you are first diagnosed with cancer, shock is the first order of business. When they start sticking you with needles and you begin to see the bills roll, the “awe” starts to kick in. As you becomes a seasoned warrior, you start to get angry about just how much time, money, opportunity, energy and actual tissue you have lost to this damn disease. In my last post, I reported that an adrenal ablation treatment, although hugely successful, shit-canned another of my organs. Killed it. Rendered it useless. Cooked it with microwaves. Between the adrenal gland, an entire disc in my spine, my left kidney, 12 lymph nodes and my thyroid, I’m running with a few less organs than the good Lord saw fit to give me at birth.
So here I am, almost exactly 5 and a half years into life with renal cell carcinoma, when the Internet said I’d have only a five percent chance to be here, I find myself in a situation where I want just a little bit more of everything, and this song resonates with me.
Here are the lyrics to the song:
“A Little Bit Of Everything”
On the bridges side that faces towards the jail
Setting out to join a demographic
He hoists his first leg up over the railAnd a phone call is made, police cars show up quickly
The sergeant slams his passenger door
He says, “Hey son why don’t you talk through this with me?
Just tell me what you’re doing it for””Oh, it’s a little bit of everything
It’s the mountains, it’s the fog
It’s the news at six o’clock
It’s the death of my first dog””It’s the angels up above me
It’s the song that they don’t sing
It’s a little bit of everything”
An older man stands in a buffet line
He is smiling and holding out his plate
And the further he looks back into his timeline
That hard road always had led him to today
And making up for when his bright future had left him
Making up for the fact that his only son is gone
And letting everything out once, his server asks him
“Have you figured out yet, what it is you want?”
I want a little bit of everything
The biscuits and the beans
Whatever helps me to forget about
The things that brought me to my knees
So pile on those mashed potatoes
And an extra chicken wing
I’m having a little bit of everything
Somewhere a pretty girl is writing invitations
To a wedding she has scheduled for the fall
Her man says, “Baby, can I make an observation?
You don’t seem to be having any fun at all”
She said, “You just worry about
Your groomsmen and your shirt-size
And rest assured that this is making me feel good”
I think that love is so much easier than you realize
If you can give yourself to someone, then you should
‘Cause it’s a little bit of everything
The way you choke, the way you ache
It is waking up before you
So I can watch you as you wake
So in the day in late September
It’s not some stupid little ring
I’m giving a little bit of everything
Oh, it’s a little bit of everything
It’s the matador and the bull
It’s the suggested daily dosage
It is the red moon when it’s full
All these psychics and these doctors
They’re all right and they’re all wrong
It’s like trying to make out every word
When they should simply hum along
It’s not some message written in the dark
Or some truth that no one’s seen
It’s a little bit of everything
As we prepare for our eldest son’s wedding a little later this month. I realized that Michael is giving Janice “A Little Bit of Everything.” Marriage is way more than the ring.
The joining of their two lives has made me look back on my life and my vows to Jill. Living with cancer has made me want so much more — time, experience, travel, dinners, breakfasts, quick glances when someone in the room says something we both find funny or poignant, grandchildren, walks on the beach, pillow talk, time with our children, time with our parents, time with our friends, time with our pets, the smell of our pine forest, garden dirt, cold drinks in July, the occasional snow ball fight, a-n-y-t-h-i-n-g that gives me more face time with the people I love. That is what I want. And, we’re fighting like crazy to make it happen.