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.
After my last Thursday meeting with Dr. Pippas, we’ve circled back around now and I’m on the full 800mg daily dose of Votrient. As I suspected, my quality of life has taken a noticeable hit. The superficial — and easiest to handle — change is that my eyebrows went stark-white within three weeks on Votrient.
My new hair is snow white as it grows in and white is winning the battle over light brown. Right now, I look like I’ve been coloring my hair, but have decided to give up and stop. There is a one-inch band of pure white hair coming out of my scalp and each successive haircut will reveal more of the white. My women (if you know me, you’re aware of the passel of sister wives it takes to run my life) say they like it. That it gives me a distinctive look. I think it makes me look like Father Time, but it is what it is.
The side effects of the medication that are anything but superficial and are very difficult to manage are the gastrointestinal issues. Nausea and diarrhea are a constant stealthy threat. Stealthy isn’t what you really want with these guys. I’d much rather see them coming so I can be prepared. But no, they just jump right up and bitch slap me at a moment’s notice. Not fun right now. Not fun.
I still can’t taste, although using plastic utensils and taking zinc have made my tastebuds more intermittent than a total loss. There are some things that I still can taste. I’m thankful for that.
Thanks to my brother, Eric, I got to ride along on my first quail hunt last Sunday down in Albany. I went with a borrowed shotgun that I had never fired and I was nervous as hell about what I was supposed to do. We got the safety talk and because of my weakened legs, I was allowed to get out of the buggy and be ready for the first covey rise.
Here’s the scenario: I have determined that my left eye is my master eye. This is probably why I haven’t ever been able to hit anything shooting a right-handed gun. So, I went with a borrowed over and under shotgun, which I shouldered on the left side. The first covey got up and I picked a bird and dropped it with my first shot. I got so excited and nervous, the next four shots were all attempted with the safety on. Let me tell you, that almost never works. You can’t shoot a bird when the gun won’t go off!
I was over-thinking all the safety concerns (if that is possible…I don’t think it is.). Worried about shooting that expensive, beautiful bird dog. Worried about pulling a Dick Cheney and shooting somebody. Worried about looking like a dumb ass in front of my brother and his friends. (I’m pretty sure I blew that one, though, with the four consecutive attempts to fire the gun with the safety on.) I got tired really fast and decided that I’d go out while I was ahead and take my place back in the bird buggy. I think I hit every bird I shot at. One. Technically, the safety-on misfires were called strikes, so I can’t claim I batted a thousand. Let’s just put it this way: I got a quail. I got to experience what a luxury, high-end quail hunts looks and feels like. I got to spend some good time with my brother and some of his best friends. And, If I had had a trunk full of Japanese toilet seats, I could have made some money that day.
I have been wanting to tell this story for months, but have been worried about how it would be taken by the male readers of this blog. So, Sunday, I tried out this story on a dozen or so of the manliest guys I know. They’re all rugged outdoorsmen. They like to cuss, drink, lie about women, shoot guns and grill large chunks of meat. I’m thinking this is the perfect crowd to test drive the Japanese toilet seat story. So I let it fly.
Some background first: I have given my sons some serious advice about how to keep a relationship fresh. There are a couple of bodily functions that should NEVER be shared with your mate. If it is possible to have your toilet in a separate room with a door, than that is what you should always shoot for. Anything that you’d do or any sound that you’d make while sitting on a toilet should be kept there behind that door. As long as you keep this to yourself, your relationship will always have a sense of mystery and have a better chance of being kept fresh for the long haul. This has been my philosophy and my sons will attest to the fact that I’ve counseled them in this regard.
So, let’s move on to the days after my back-to-back back surgeries. I had the excruciatingly embarrassing need for hospital techs to clean me in the bathroom on several occasions while I was still in the hospital recuperating from major back surgery. I couldn’t bend and reach like before the surgery. All I could think about was that someone was going to have to do this for me after I got home. By the time I got home, thankfully, I was able to take care of myself, but the horror that one day I might not be able to just stayed on my mind.
I started investigating Japanese toilets several years ago. They were unbelievably expensive when they first hit my radar. A couple of thousand dollars was the going rate and they were generally a modified, electronic entire toilet. Now, they have been engineered to be an electronic toilet seat that will simply replace the seat on most types of toilets in use today.
Okay, we’re back to Sunday in south Georgia. On a quail buggy with a dozen cussing men. I described in very vivid detail about my Coco toilet seat, what it does, how it does it and how it makes my life more comfortable and more easy and private. I swear if I had had a dozen of them, I would have sold out that day. I don’t know when I’ve been more uncomfortable at the start of a story to have it go so well. The Sunday story at the quail hunt was my warm up for this blog post.
I ordered the Coco 9500R a few months ago and despite my rather unhandiness, I was able to completely install it by myself, including retrofitting the electric wall plug to a GFCI (ground-fault circuit interrupter) plug. It took only about a half-hour to do the wiring and replace the seat on our Toto elongated toilet. I can easily say that this incredible piece of electronic equipment has changed my life. Now, I’m prepared for whatever life throws at me and I can be confident that I’ll be able to maintain my dignity in the bathroom and the mystery in my marriage.
I wasn’t able to find anyone who sells these locally, but if someone steps up and confirms that they sell this seat locally, I’ll give them a special advertising deal in Columbus and the Valley magazine so they can let people know about it.
Please accept my apologies about these blog posts being sparse. This medication has, among other things, rendered me unable to write, at least write to my satisfaction. I’m hoping it’ll begin to turn me loose as my body adjusts to the dosage. I miss writing and from the encouragement I get when I see my great readers, many of you are missing these posts, too.
The last time I spent the night in a hospital with a condition that was NOT cancer was back in the 1980s. I sustained an injury to the tendon that controls my left pinky finger. I was at Julene and Andy Buice’s home. Andy had a motorcycle accident several years ago and lost his life — I lost a great friend. Their little house was across Cherokee Avenue from the Columbus Country Club and the driveway was a bridge that crossed over Weracoba Creek.
Even after all the partying we did at that house, not one of us ever ended up in the creek. I did have an accident there one night that ultimately sent me to the hospital for surgery. After visiting a hand specialist at Georgia Baptist Hospital to confer about my condition, we decided to have the surgery done here to reinsert the tendon that had been dislocated when I tripped over Julene and Andy’s sleeping black cat, who also just happened to be sleeping on a black rug. I stepped. The cat hissed and yelped. As I jumped out of the way, my left hand slid down the wall as I tried to gain control of my fall. My little finger hung on the moulding around the door frame and my 160 pounds kept going.
Okay, so I’ve gained a little weight.
After that injury, my left pinky finger kind of flopped in the breeze. I couldn’t hold it tight against my other three fingers. This was such an unusual injury, three orthopaedic surgeons were in the OR with me. The surgery was successful and I spent one night in St. Francis Hospital. As I found out yesterday, being in the hospital is never a boat load of fun. But, being in the hospital with almost anything that is NOT cancer, can be quite fun if you look in just the right places.
Back in the 1980s when I had that finger injury my old friend, Larry Aglialoro, came by to see me and we were the only two people in the room. Larry and I probably have enough on each other to get in deep trouble and I will be taking those stories with me to the grave. I can tell this one, though. Ag was looking out the window and he said, “Mike, there are a bunch of nurses in that building over there.” I had just had a big ol’ IV narcotic pain killer pushed into my vein and true to it’s word, I was feeling no pain.
“Ag, help me get up out of this bed. Come on, I need you to help me get up on that ledge. I’m gonna moon ’em,” I said. I rolled out of the bed, pushed my stand holding a bag of fluids over toward the window. We pushed a chair over to the ledge, Ag gave me a boost and I stood up on the ledge and pressed some ham on the window. I stayed up there long enough to make sure we made eye contact with them and I think one of the young women gave me two thumbs up. In fact, I’m sure of it. The memory of Ag, dressed in a suit and tie, hoisting my half naked, hospital gown clad self up onto that ledge still makes me laugh as I sit here some 35 years later.
I have been sheltering an embarrassing secret for the past couple of years. The sound of the word, goiter, doesn’t roll very easily across my tongue. When I think goiter, I see an Amazonian indian with his dark skin painted white. He has an enormous bow, strung with God knows what and the quiver of four-foot-long arrows are coated with curare. That is exactly was I see in my mind when I think of the word goiter. Hey buddy, is that a goiter on your neck, or are you just glad to see me!
In fact, I can’t believe I’m writing about it now. I used a collection of code words when I referred to it in my talks with Jill. My surgeon, Dr. Mac Molnar, said, “Mike, this is the biggest goiter I’ve ever seen! Probably weighed a couple of pounds. It was the left lobe that had grown down into your chest.”
I knew that I had begun to experience difficulties swallowing and it had become very difficult for me to speak loudly enough to be heard in a noisy room. After hearing how freakishly large this goiter was, I’m really excited for everything to be healed. I suspect that I’ll have a much better quality of life with it gone. It is a shame that they had to send it off to be biopsied. It would have made a great anchor for my fishing kayak.
We’re home from The Medical Center and will be able to sleep in our own bed tonight. All the staff at The Medical Center were fabulous. One hit, almost painless needle sticks and extremely attentive, kind care was delivered to us with smiles and cheerful attitudes. Everyone seemed to have a kick in their step.
Meanwhile, since I’ve now delivered my goiter and since I’ve written about it boldly and without fear, I am putting it behind me and looking forward to an easier life without the difficulties it caused. The past few weeks have been all about my pushing my fears to the front and talking openly about things that are embarrassing for me to talk about.
A few weeks ago we showed up at No Shame Theater with my djembe drum that Jill bought me for my birthday. At the end of that evening I brought shame on myself and my family. Turns out that for some there is shame at what is otherwise a “No Shame” zone. I reached back and started tickling Jill’s ankle with my fingers. I felt her jerk away and I went back in for another grope. Then a hand appeared on mine and snatched my hand out of the way. Yes, I was playing with a strange woman’s leg. Oh my God, our whole table erupted in laughter during a time when we really shouldn’t have been laughing. I’ll never be able to go there again.
The thyroidectomy went very well. I didn’t lose my voice, although I am very hoarse and will likely be for a few days. My calcium levels are spot on, which means Dr. Molnar did a good job preserving parathyroid tissue. I was mostly blissfully out of pain and got visits from two of my sons who live in town. I am 59 years old. My sweet parents were at the hospital at 5:30 a.m. yesterday. Ann and John Venable have never missed a single thing in my life. All those Little League games, football games, school plays, concerts, speeches — they have been right there. They are the sweetest parents that I can imagine anyone having. They have given me a good name, wonderful guidance, unconditional love and encouragement to reach for the stars. Jill and I both have great parents and we are so fortunate to have them close by and solidly in our lives.
I hid the goiter from them too. I was afraid they might shun me if they knew about it. There, now I’ve said the G word out loud. I never want utter that word again.
Sitting in the afterglow of a beautiful day. Headphones on listening to Evening Kitchen by Band of Horses. I can hear our sons Michael and Adam singing this like they did at our last family trip to Splendor Mountain. I’m scanning friends’ photos on facebook with the music in my ears. Families smiling, football games, glasses of wine, empty places in honor of soldiers, sailors, airmen and marines lost in battle or lost to the holidays while deployed, prayers, plates of food, family pets and people napping. Vignettes of other people’s lives. Snippets in others’ time.
Our Thanksgiving prayer today was a circle of 22 people holding hands in our great room, a little churchy for this Episcopalian, but I was just feeling it today. I usually fret over my prayer, but today I just busted it out, sort of in Rick McKnight style. Don’t know if it is what I’m going through with my health or if I just got a drift from my muse or the first ever gathering of all four of our sons for our Thanksgiving meal. This day was good. Thank you God for this day.