Columbus and the Valley

Mr. Herlihy

Let’s break it all down…down…..down (think echo, here). I’m speaking to you right now from the bottom of a single, deep, oddly-misshapen taste bud from one side or the other of my tongue. The soft, shiny tissue looks innocent enough from this close proximity, but we all know there’s lightening waitin’ to be unleashed if that fat old man takes a shine to dressing somebody down.

During a short nap, I had this snippet of a dream. I have this similar dream when I get into a rare dream state and I’m not feeling well. I am always a minimized version of myself, left to look up at a Texas-sized lanscape. Cancer makes me feel small, especially that I’m having such a difficult time doing any damn thing. My joints, by God, hurt! I know I’m a tough guy, but living through 40 months in some sort of daily measurable physical pain really does wear on a body.

The odd dreams in naps notwithstanding, my whole body is a mess right now. I can’t taste anything specific. I, in fact, can taste everything and everything tastes like everything else. Sweet. There is no savory for me at the present. Salt is sweet. Chocolate is even sweeter, but in a weird off-putting way. For a guy who can taste the razor-thin nuances between different types of grassy flavors in a sauvignon blanc, being sentenced to a one-taste-fits-all universally bland sweet flavor profile is pretty much awful.

As you know, I haven’t posted in a while, and I’m sorry about that. I have been nauseated almost constantly since I started on the 800mg dose of Votrient, a powerful tyrosine kinase inhibitor (oral chemotherapy) drug I have been taking since Tuesday, November 13.

I went to see my primary medical oncologist, Dr. Andrew Pippas, on Thursday, November 29 for a follow up visit to see how I was taking to the new medication. Andy reached over and unwrapped a tongue depressor and looked back in my direction. “I don’t think that’s a very good idea,” I said. “If you’re having a burning sensation in your mouth, I need to see what is going on,” he said.

“Then you had better give me a barf bag,” I said. I palmed the barf bag and he went in. I felt like Mr. Ed for a short while.  Dr. P was on the fringes. “Well, your teeth look great,” he said as he rolled my tongue around, dangerously near my very shallow vomit trigger.

Then he went deep, and so did I. After about ten minutes of hurling, we were able to resume our conversation. He looked at me with compassion, even though he was easily  the cause of my having to add yet another tick mark to my ridiculously short vomit streak. A good vomit streak (or the lack of vomiting for a time, technically) is hard to come by when cancer is in your life.

At the end of that appointment, Dr. Pippas cut my daily 800mg dosage of Votrient in half, with the intention of ramping me back up to the full dosage over some period of time if my body will adjust. In addition to the all-encompassing nausea, fatigue was a major side effect at the full dosage. I slept a lot, long nights and naps during the day and still awakened feeling like I could just curl back up and sleep some more. People say to listen to your body. Mine was telling me to sleep. So that is what I did.

So, with Dr. Pippas telling me to skip the entire dose on the 29th and to begin on November 30 with a 400mg dose, I am now six days into the reduced dosage. Yes, I feel more like myself. Yes, I’m able to hold food down. Yes, my tongue feels more like a tongue than a studded, metal hacky sack.

But, it is still a daily struggle, mainly with my not feeling like doing much. Sadly, one of the the things that I just not felt like doing is writing. I know that I have a huge, loyal following of this blog and those people want to know what is going on with me. I have commiserated with others who are on some kind of medical journey and who also blog about the struggle between just getting some information out and being able to write something you feel good about people reading. Something you’d be proud of, so to speak. Too many times I’ve had to just sit down and take that journalistic dose of castor oil and bang something out when I had much rather be entranced with some piece of good music and have my heart flow through my fingers as they dance across my MacBook Pro’s keyboard. Lately there has been too much “castor oil” gagging and not enough flowing.

Maybe this downward dosing (which I just confirmed on the phone with Dr. Pippas’ office will be in place until at least Dec. 27, when we return to see him) will allow me to extend my vomit streak through the Christmas holiday. Then we’ll look toward the new year (my 60th) with an idea of how to proceed.

With the ramping down of nausea, I’m hoping for a ramping up of blog activity. If that turns out to be, then there’ll be more to follow. In the meantime, I hope you had a great Thanksgiving and are thick into the planning for your Christmas holiday. Merry Christmas, Mr. Herlihy!

See you soon!

Thank You, Carlton Motorcars, Inc.

Wednesday of last week was the day we got to go back home from our tiring initial appointments and diagnostic testing at the Duke Clinic in Durham, NC. The plan was to go up there and meet with Dr. Dan George and Dr. Mike Morse to be evaluated for HD-IL2 therapy. We were able to do what we went there to do and was pronounced healthy enough to be able to survive the therapy.

Needle sticks, a stress echo test and some high-anxiety meetings with the doctors made for a couple of tired travelers. We pulled out on Wednesday morning, excited about getting back home to our own bed and to our family and friends. We fired up the car and put it into the wind, thinking we might be heading into some possible rain that hurricane Isaac might be slinging around. The rain didn’t materialize, but something worse sure did.

Jill and I are not into chain restaurants when we’re in a new place. She did some research on the Yelp app on her iPhone and we picked The Bohemian Cafe in Greenville, SC, which is almost exactly half way home. We got to the restaurant at about 2 p.m. for a late lunch. After a great lunch, we shopped for a few minutes in a vintage vinyl record store which is conveniently accessed through the restaurant.

All that was left for us to do before we got back on the road for the last half of the trip was to gas up. Like I said in my last post, just as we were turning into the gas station, a couple of jolts that felt like the transmission was coming apart set me on edge. By then it was about 3 p.m. and I made a phone call to Carlton Motorcars, Inc., Greenville’s Mercedes dealership, which was thankfully only 2.8 miles up Laurens Road from the gas station.

I got David Knutti on the phone in the dealership’s service department. He very professionally gave me a couple of things that I could try that might reset the vehicle’s electrical system and make the problem go away, if it was only an issue that a reset could fix. I told him that we would try those, but that if that failed, we’d be up there to see him.

Sure enough, the quick fixes didn’t work, so we limped up the road, bumping and grinding all the way. Normally my trusty, 8-year-old Mercedes E500 is still so exciting to drive. She is heavy and solid, but is so nimble to the touch. She begs for speed and the faster you go, the more she seems to like it. But, whatever was ailing her made her listless and flat. I was sad about it in a way.

So we rolled into Carlton Motorcars service area, which is in a separate building from the sales end of things. I got out of the car and asked for David. A smart, thin, glasses-wearing man put out his hand to shake and I could see the “it is 3:25 on Wednesday before a holiday weekend and we’ve been slammed” look in his face. I mean, how could he help that? It was true! I filled out some paperwork and he palmed my smartkey and headed over to the car to get what he needed there.

As he got out of the car and turned back my way, the magic started to happen. He had the look of a man who wanted to do something nice for two tired travelers. He escorted us to the nicely appointed, very clean waiting area and offered us snacks and drinks. I eyed the big, stainless steel, high-tech looking coffee machine and walked over to check it out. There were two bean hoppers on top that would, on command, grind either caffeine-free or regular coffee beans. Then, you could select how large a cup you wanted. This is a perfect coffee situation. Since I like my coffee bold, I chose the smaller cup option and hit the button. Less than a minute later, I had a perfect cup of hot coffee. That is a cool machine (I use the word “cool” with permission from Jimmy Elder).

Twenty minutes later, David came back into the waiting area and told us two good things. We found out what was wrong with the car and that they had the part that could provide a fix. Not only did they get us out of there in less than a total of two hours, I got two phone calls on Friday to follow up on their work. One of the calls was from David Knutti. I told good friend, Bill Becker, about the experience that we had a Carlton Motorcars and he did such a Bill Becker kind of thing: He wrote an email to David Knutti and told him that he had served his good friends in a great time of need and the he appreciated how well we were treated.

Usually, when something great like this happens you tell a few friends. I decided to tell a few thousand friends via this blog post, on Facebook and Twitter. That is the kind of customer service that is so hard to find in this online internet world. David, I got the owner’s name from you in order to write her a letter. I decided to handle this in a different way. Please share this blog post with Heather Carlton and tell her you could use a raise in pay. You are a great ambassador for her business.

I’m packing right after I finish this blog post. We’ll be pulling out in the morning for another 8-hour drive to Durham. Some time on Monday afternoon, they’ll insert the picc line in which the drug aldesleukin will be dripped into my heart. Later, at 6 p.m., they’ll turn the switch for the 15-minute infusion of the drug that will likely turn me every which way but loose. Then, every 8 hours they’ll drip in some more until I physically can’t take it anymore. The goal is to take 14 doses, but with my diminished kidney function, it is fairly unlikely that I’ll make that number.

We’ll be in a step-down unit that functions like an intensive care room in terms of the ultra-high level of scrutiny I’ll have. Jill will be allowed to stay with me and unless the rapture happens, she’ll be constantly by my side. One of my best high school friends, Richard Barrett, has told me that he wants to come up to Duke from his home in Greenville and tag out with Jill to give her some respite. You might recall that he did this for us after my drug addled first radiation treatment at Emory back in December of 2010. I still don’t know what I said to him that afternoon.

Needless to say, I wouldn’t just let anyone see me in the sad shape that I’ll be in next week. But I’ve already babbled incoherently to Richard once, so we’ll appreciate his visit one day next week to give Jill a break (if she’ll take it). By the way, other than Richard, I do not want or expect any visitors while we’re going through this treatment. Even though I’m not a particularly vain guy, I will be at my lifelong worst next week, and I really don’t want to be seen as the amorphous, slobbering blob that I’ll likely be.

I just got a call from Sea-Daddy Neal Pope. A sea-daddy is an affectionate term for an older Marine that takes a younger man under his wing to show him the ropes. Despite the glorious performances Neal has delivered in a courtroom, he also knows medical adversity the likes of which are not known by many. Here’s what he told me: “Son, the stadium is full and they just handed you the football. It is all on you now.” Tomorrow, we go. Monday evening is when I and the drugs will be darting through the defending roadblocks caused by the cancer cells that want to bring me down. Your prayers are appreciated as we begin this difficult journey.

I also want to send out a tribute to an old friend, Terry Thomas, who is facing difficult days with melanoma. He has been a warrior for our country and he is facing an enemy he can’t see right now. Please join me and pray for him, too, as well as all the others who are living with cancer.

The Sign Said, “No Goitering!”

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.

Come on 2011!

Here’s the deal: I could use some improvement in the general outlook of my health, my luck and my bank account. I have relied on people I love dearly to provide us with the traditional New Year’s Day meal. You know, the greens, blackeyed peas and hog jowl that are supposed to bring you health, wealth and luck during the upcoming year. I’m thinking that maybe the dear, sweet people who have cooked for me over the past few years might just be a little short in the mojo department.

I might be sick, unlucky and broke, but I’ve got some damn fine mojo! So, this year I’m cooking my own New Year’s Day feast. Collard greens, swimming in fat, blackeyed peas (also swimming in fat), fried hog jowl (ridiculously surrounded by fat) and a famous Tigner family favorite called spoon bread, which is served with the fried hog jowl and fabulous tomato gravy.

I’m busting out a feast with my most intense culinary mojo that is designed to alter the course of my future. Besides a horrendous infusion of fat grams, our meal will infuse us with visions of health, wealth and utter happiness and luck. This is my story and I’m sticking to it!

2010 can kiss my ass!

May the good Lord bless me, my family and all my friends in the new year. OK, Lord, you can also bless my enemies, except for cancer. Don’t bless cancer.

Swing Weight

October 23 is an important day for me. Firstly, it is my fantastic father’s birthday, and it is a big one. Although I’ve said it before — he’s still a 35-year-old in my mind’s eye. But I told my mom that if she’s planning a birthday party for dad, she better plan to have it before his birthday, because on that day, I’ll be embarking on the most physical challenge of my life. A big bunch of us will be shoving off from Rotary Park on the morning of the 23rd of October in kayaks on a mission to paddle our way to the Gulf of Mexico. More about that later…

I got into a kayak for the first time on the evening of April 28th, 2010. Keep in mind, this is after I had committed to do this two-week kayak expedition in October. I am not a great swimmer (I could save myself in a pinch), I’m epically claustrophobic and I don’t have great balance (probably because I’m a little top-heavy). These three liabilities would seem to fly in the face of reason for choosing kayaking as an activity. I’ve chosen to do this as an visible, physical symbol of my intentions of beating cancer. I’m paddling, Jill and I are regulars at the new John Thayer YMCA, I’m eating right and I’ve learned how to safely execute a wet exit from a overturned kayak.

Let me tell what I have learned about kayaking. First of all, it is a blast! Imagine floating along under the light of a full moon with a group of friends. It is quiet, except for the sounds of wildlife and the sultry slurp of paddle strokes. The best way to see nature is in a kayak. The other thing you need to know is that there are many, many decisions to make if you want to take up the hobby. Here are a few: sit-on-top or sit-in kayak, length of the kayak, type of personal flotation device, what kind of paddling you’ll be doing, types of paddling clothing to consider and ways to transport your boat to the ramp — just to name a few. The one big decision I didn’t mention here is your choice of paddle. On a trip like the one I’ll be going on this fall, the choice of a paddle will likely be my most critical decision. Here’s why: An active sea kayaker will execute between 2,000 and 4,000 strokes per hour. If a paddler puts in an 8-hour paddling day, those numbers will yield a total of 16,000 – 32,000 strokes.

There are paddles make with wood, aluminum or fiberglass that can weigh up to 40 ounces. Then, there are those gorgeous, sleek, perfectly weighted paddles made out of carbon fiber. The Epic Relaxed Touring paddle weighs in at an incredible 22 ounces. Imagine the difference between swinging 22 ounces and hefting 40 ounces over the course of an 8-hour paddling day in the midst of a two-week, 265-mile river adventure! The paddle, which I don’t yet own, will be the subject of future posts to this blog. By the way, there are even more decisions to be made just concerning the paddle. Straight shaft or bent, what weight, what material and what length?

My point here is to do your research. Access the Chattahoochee Paddling Club’s Yahoo Group page: http://groups.yahoo.com/group/ChattahoocheePaddlingClub/ and request to join so you can see the high level at which local paddlers communicate and recreate with each other. There is a lot more coming on this blog at we approach our departure date in October. Come back often!