Columbus and the Valley

Thanks for the Birthday Wishes!

We slept in, I got to see Star Wars, I found out that our cat, Gracie, CAN get off the roof of our house all by herself (we rescued her with a ladder yesterday) and I got to have three meals with my beautiful wife. All that was great! In addition to all of that greatness, I have had an incredible walk back through my 63 years — or at least the ones I can remember. I have spent a great deal of time this afternoon reading over 700 emails, Facebook posts, text messages. What a trip!

As I read each birthday wish, I conjured up that person’s face, remembered how I know them and I tried to savor the memory of the significance they’ve played in my life. Among them were people I’ve known since first grade at Britt David Elementary, the first girl I ever seriously kissed, friends from my old neighborhood, people with whom I’ve worked, neighbors in Huntsville, Ala. and Wichita, Kan., a doctor who saved my life, another doctor who is helping keep me alive and all four of my fantastic sons. I’ve been sung to by my sweet parents and dear friends Marquette and Rick McKnight and Laurel and Fred Blackwell. It was a very, very special birthday and I want to thank everyone who stopped for a moment in their day to take the time to make my day enjoyable beyond belief.

 

If Your Central Gateway Ain’t Happy, Ain’t Nobody Happy

We had a very, very long day yesterday on the return trip from Duke. We stopped in Greenville for lunch, which is almost exactly half way home. We were at a great little restaurant called The Bohemian Cafe. Really terrific sandwiches and an attached old-time record shop with thousands of vinyl albums and a smattering of CDs, too. After lunch we stopped at a gas station right across the street to fill up and that is where things went south.

As we pulled into the filling station, I felt a very noticeable bump and it seemed that my entire car just went flat. Gone was the leopard-like, perfectly-tuned, solid stance that makes our 2004 Mercedes E500 so much fun to drive. Instead, she felt listless and unstable, much like the busted up old man who was driving her. Sometimes these cars have a mind of their own, so we filled up the tank and restarted, hoping things would be back to normal for the remainder of the trip. Didn’t happen.

I pulled out my iPhone and used my favorite app, Poynt. We called a local Mercedes dealership and got David Knutti, the service manager on the phone. He suggested a couple of things that we might try to reset the car and those didn’t work. Thankfully, the dealership was only three miles up the road we were on, so we limped to the dealership and winced at each change of gears (up and down) when the car bumped like it was about to come apart.

I got out of the car first, and like my car, I limped over to the desk to greet David. I filled out some paperwork and David went over with my smart key to gather some information. Jill told me later that when he got into the car with her, she pulled the cancer card to try to garner some extra punch for our appeal to get back onto the road. It worked, because in a few minutes, David popped back into the waiting room and informed us that our central gateway was busted, that they had one in stock and for less than $500, including parts and labor, they could install it and get us back on the interstate. That was good news (except for the $500 part).

He told us that the central gateway is about a 4″ square box that handles the plethora of electrical communications between the brakes, engine, transmission, traction system and suspension. So, when it went out, the entire car felt listless and disconnected. My car has 175,000 miles on it. Technically, she is well-cared-for teenager in terms of how long these cars can run, but with us being on the road so much, I want her to run right every time we crank her up. If this breakdown had happened out in the middle of nowhere, we would have been alright, but the day would even have been longer. Thanks to David, we were in and out of the dealership in under two hours.

The other piece of good news, is that while we were waiting, we got a call from someone I’m going to get to know very well over the next few months. Cindy Simonson, Dr. Michael Morse’s nurse practitioner in the HD-IL2 program, called and told us that they had made room for us to begin the therapy on Labor Day, instead of the following day. So, we’ll be leaving again on Sunday for the 1,150-mile roundtrip to Duke University Hospital to begin the ugly next chapter of this cancer journey.

The Monday start will likely have us coming back home next Saturday to begin the recovery process in advance of the return on Monday, September 17 for the B part of round one. This weekend, we’ll be gathering newly purchased extra-fat clothes to accomodate my dramatic first-round weight gain. I’m expected to gain 20-40 pounds of water weight during that first week of therapy. The weight will drop off pretty quickly, but I’ve got to take some big boy clothes to travel home in. The other things we’ll be taking are lotions, movies and TV shows on DVDs, a few pictures of our family to inspire me and a load of my dad’s semi-world-famous peanut brittle to share with our Duke family of  healthcare professionals. I had actually already built of a stash of brittle in my office to take with us. I heard on Facebook that our office peanut brittle thief, Marquette McKnight, has very slightly diminished that stash in an afternoon sugar fix fit.

We appreciate all the notes of encouragement! Jill and I read the posts together at night as we put on our armor for the next day of battle. Going into this next phase of treatment girded by all the support from our friends and family is exactly what we need.

HD-IL2 For One, Please

We are here in Durham, NC at a Springhill Suites hotel waiting to leave for our first Duke lab work and an appointment with medical oncologist and kidney cancer specialist, Dr. Dan George. One of our sons, Nicholas, is keeping the home fires burning. Callie Sprague (and, of course, Marquette McKnight) are taking care of things at the office, so we can fully and calmly (or, as calmly I can get — which isn’t too calm, let’s be honest) evaluate the things we’ll be told after blood work and a couple of pulmonary function tests.

Here’s what I want to hear: “Mr. Venable, the cancer that has recurred in your adrenal gland and in your right kidney is not growing fast. You are a candidate for HD-IL2 therapy and we’ll start your therapy either Monday or Tuesday of next week.”

As I sit here writing this post, I’m reminded of how I felt late in May, 2009 when I was first diagnosed with renal cell carcinoma. I had a 5% chance of surviving for 5 years, according to the 10-year-old data I was reading on the internet. I was on edge, scared to death and terrified about what my future was going to be like.

Here, three and one-half years later, after some very painful and temporarily debilitating back surgery, we have great hope in the therapy that I’ll find out tomorrow whether I’ll be able to take. There are also other tyrosine kinase inhibitor drugs that have come online that weren’t there when my diagnosis first occurred. This cancer is one of the ones where your goal is to survive long enough to live your way into new therapy options that might be able to afford a cure. I’m working on that as gracefully as I know how.

Despite the gruesome few months we have ahead if we’re fortunate to be able to challenge HD-IL2, I am not afraid and I am somewhat morbidly curious to personally experience what I’ve spent so much time reading about. Damn, how I’d love to be one of those lucky people who will post videos and write stories about the fact that they were a “complete responder.” I’ve already crafted a few turns of phrase to describe symptoms of the treatment. I visualize myself being there on the other side of this therapy, with a broken body but with the spirit of a warrior.

I can see myself on my front porch in Seale, with a still beautiful wife, an old dog and a gathering of children at my feet, all jockeying for a space to put a hand on Dixie’s graying head. I’m hearing he sounds of little boy and girl giggles at the prospect of a tractor ride through the woods. We’ll cut a cold watermelon when we get back to the house.

These images and more are at the forefront of my mind. They are not on the back burner. I don’t have time for any back-burner thought. We are willing this to happen in the most intense sort of way. As I prepare to leave the hotel and start the next phase of this journey, please see what I have just described in your mind for a few moments. Wish that for us and maybe, just maybe, it will be so.

Some of the posts that are to come are going to be technical, if we get accepted into the HD-IL2 therapy. If I get to do this like I plan, there may be multiple posts on some days. They will likely be short, so if you’re a subscriber, I hope I won’t bug you with multiple emails during the day. But that is why you subscribed, to get notifications of posts.

It is time to shower and put on my game face. We’re outta here!

Hoping TKI Delivers TKO

Just when you thought it was safe to go back in the water….

I got a call from a physician’s assistant in Dr. Lance Pagliaro’s office today. She is part of the team that is responsible for my care at M. D. Anderson Cancer Center. She, along with Dr. Pagliaro and Dr. Christopher Wood as well as a host of pathologists, radiologists and other “ists,” all work in tandem within the genitourinary oncology clinic.

She informed me that the M. D. Anderson radiologists’ reading of the CT scan that I had done at The Medical Center in June showed that in addition to the left adrenal metastasis (which has been confirmed to be renal cell carcinoma), I also have two small nodules on the upper pole of Strainer, my remaining kidney. That is not what I wanted to hear, but this news confirms that the time has come for me to take one of the tyrosine kinase inhibitors (TKIs) that I have not wanted to have to take.

I have enjoyed a good quality of life during most of the just over three years since the diagnosis of renal cell cancer in May of 2009. These drugs are very potent (an oral chemotherapy is the closest description I can muster) and can wreak havoc with a body. Depending on which one I choose, I’ll likely have to deal with some significant side effects. The hope is that I’ll respond well to the drug and that these three existing tumors will shrink and allow the inevitable surgery to be done sooner and be more successful.

I will discuss my decision with Dr. Pippas here at the John B. Amos Cancer Center who continues to oversee my case. We continue to be confident that we’ve made good decisions throughout this cancer journey and as we prayerfully consider this decision, we plan on making the right one.

I’m guessing the therapy will begin soon, so if I’m off my game the next time we talk, I hope you’ll cut me some slack. By the way, the doctor said I should definitely not vacuum, take out the garbage, empty the dishwasher or cut the grass. I have also been told that I should continue to pester Marquette McKnight, as her only (and also faux) brother.

Raise Your Glass

Besides getting to have dinner with our good friends, the evening is the closest thing we’ve had to a “normal” date night in a very long time. If I closed my eyes and dreamed last night, I could see myself completely well and out of danger from cancer. We laughed a lot, told stories and bathed in the comfortable glow that can only come from deep, real friendship.
I got delegated the official wine orderer for the night, so I did the right thing — I called Faye Simmons over and tapped into her extensive knowledge of all things grape. Faye is a certified sommelier and she really knows wine. She’s particularly knowledgeable about the wines in her cellar.
Here’s what I ordered: “Faye, I want a bold, jammy pinot noir that costs $40 or less.” She brought out a Praxis California pinot noir that was exactly perfect. Jill ordered a beet salad, Marquette ordered a cheese board, Rick ordered pork and I got chicken piccata. We all chose the small plate option, since we had been nibbling earlier at the reception.
The food was excellent and paired well with the wine. Meritage is a local jewel. We have precious few great fine dining spots in our area and these good people need our business. I would consider it a personal favor if you would pick a date and go out to dinner at one of the Meritage rooms.
In addition to being a loyal advertiser in our magazines, Faye has spent many years doing the work to certify as a sommelier, so that she can bring added value to her diners. She has poured her heart, soul and checkbook into her business and the dining experience there is really special. Please go, and let Faye know that I asked you to support Meritage.
The Praxis pinot noir was so memorable that I asked Faye if I could take home the empty bottle to add to my collection of special bottles. I want to remember what it feels like to be on a date with the most beautiful girl at the party. I want to be able to conjure that warm glow and forget cancer. It really was a nice night.
So, I dropped the bottle in my back seat and headed home. I had an early morning this morning. I shot photos for one of our publications at the Children’s Miracle Network at The Medical Center’s Reindeer Run. When I parked my car, I went into one of the rear doors to get a camera out of a jacket pocket and knocked the empty wine bottle out onto the street. It clanged, rattled and rolled toward the curb and landed just behind my front, left tire. I got down on my knees and retrieved it and before I got up, I raised my eyes just far enough to make solid eye contact with a Columbus Police Department policeman on a Harley Davidson motorcycle who was tasked with closing the road for the race.
He didn’t say anything with his mouth, but with a shake of his head, he said volumes about what he thought might be going on over on my side of the street. I got a chuckle over that one.
So, in tribute to Meritage and the great night we had last night, listen to Pink’s song, “Raise Your Glass.” It is a great anthem to good times with a beautiful wife and friends.