Columbus and the Valley

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!

My Sock Monkey is Fierce!

I got the phone call we were looking for yesterday from Dr. Pippas. He has managed to work with Dr. Dan George at Duke University Hospital to get our consultation appointment moved up a full two weeks! The new appointment time is 1:30 p.m. on Wednesday, January 11.

I have filled out all my new patient forms online (how nice to have them digital!) and have submitted them to the doctor’s office. The scheduling person, Stephanie, wasn’t able to answer all my questions about what might happen while we’re there. Will there be blood work? Will there be scans? Will I take a treadmill stress test? I don’t know the answers to these questions, so I will be packing Xanax, just in case they decide to slide me into a tube, either feet- or face-first.

Getting this appointment moved up is HUGE for me. I have been a basket case, although a calm one. The way my mind works is that once I have made it up regarding a particular course of action, I simply cannot sit around and wait for things to happen. I want to go NOW. The tone of my phone calls to Dr. Pippas’ office has been, frankly, more intense as I have made them. I think I have been somewhat of a pest, but we have a small business to run and the possibility of the first vacation we’ve taken in a long, long time scheduled, too. We need to keep the business running and we want to be able to take this Caribbean vacation with two couples of our best friends.

I am thinking, “If we could get this ball rolling, we can do the therapy, I’ll have time to get over it and we can still make the Water Island trip.” That really wasn’t practical, given the time some of this stuff takes. So, with the great gift of an earlier consultation appointment with Dr. George, we’ll be able to learn all we need to know about whether I’ll qualify for the treatment, what we have to do to prepare for it, get out the April magazine and still make our trip. Then, if Duke’s scheduling will permit, we’ll start the treatment as shortly after March 5 as we can.

With the usual one week on and two weeks off and one week back on scenario, by mid-May I should be cancer free, ready to hug my family and friends, golf, fish, kayak and continue to look for ways to embarrass my children. If I make it through to the healthy conclusion of HDIL-2 that I envision attaining, my next point of focus will be to urge the appropriate parties to produce us a grandchild.

None of our sons are married. Some are more seriously dating than others. We’d appreciate them getting things done in the right order and all that – but damn it, I want a grandchild!

When the HDIL-2 purges me of cancer, I also intend to write about other things in the blog than kidney cancer. There is so much more than I can write about! My head is completely stuffed with some useful things to impart and also some useless drivel that only weird people would want to read. Since I have quite a few weird readers, they’ll be happy with those writings, I’m sure.

Jill and I are reading now, trying to prepare for the HDIL-2 treatment. We won’t know which of the awful potential side effects will bother me. But we have to assume they all will, and be ready with the proper clothing, shoes, lotions, diversions and drugs to counteract them.

One of my favorite tree-hugger, animals-are-people-too people, Callie Sprague, has convinced me to use visualization so that my mind will condition my body to find and kill these cancer cells. What I may not have said about this particular cancer and the HDIL-2 therapy is interesting. The very toxic drip that they’ll mainline into my heart every 6 hours doesn’t kill cancer. It is designed to ramp up your immune system and allow it to literally rise up and kill the cancer cells, no matter where they are in your body.

If you’re a regular reader of this blog, you know that Kate Nerone gave me a sock monkey after reading one of my posts in which I referred to this lovable sock-skinned creature. Until that monkey ripped the face off that woman in Stamford, Conn., I would have never considered a monkey as my preferred mascot in an ass-whipping competition. Something with a more fierce reputation, like a honey badger, would surely be a better talisman for my upcoming battle.

Thanks to Kate, I have a sock monkey in hand. Last time I checked my office, there was not a honey badger in sight, so I will be taking my sock monkey with me for all the HDIL-2 treatments. The monkey’s name is Robert Charles (R.C.) Killer. He’s a seasoned killer, so tortured by renal cells as a baby monkey that he’s developed a lethal hatred for them. A lifetime of bullying by renal cells has hardened him into a single-minded killer. Killing RCC is his only past-time. Uninhibited by hobbies, he has devoted his entire life to killing RC cells within my body.

Sock monkeys mate for life. The bonding begins as they’re packed for shipping to their new mate. As Kate boxed Killer to send him on his way, the brief stretch of darkness and the incessant jarring as the package made its way to me only served to make him a more lethal killing machine. There is nothing more deadly than a pissed off sock monkey!

When Killer arrived on my desk, I could feel the pent up energy that lay under that packing tape and cardboard. As I ripped the packing material, I had the sense that whatever was inside was doing its job to get out. I could feel the strength of the limbs and claws scratching their way out in order to release the creature into my arms.

Killer has been patiently waiting for me to utilize his particular brand of killing skills. He has perched on a piece of furniture in my office with a cocky look that says to visitors, “Yes, I know I look cute, but I can rip your face off in an instant and show no remorse! Go ahead, try me.” Honestly, I feel much more secure in my office just knowing that Killer is standing guard.

He was excited to know that I have a real mission for him that will utilize his considerable skills for something more than guarding a magazine publisher’s office. The typical visitor to my office is a fairly non-threatening person. They’re generally not scary, except for the occasional redheaded public relations person who comes by from time to time. Killer is beside himself with just the right amount of swagger and professional pride at the knowledge that he’s about to go up against his most dangerous opponent yet. Renal cell cancer is deadly, unpredictable and sneaky, but Killer has been trained for this day.

JIll, Killer and I are ready to go to Duke to hear Dr. George’s plan for our future in this next phase of our battle with kidney cancer. Some people will likely make fun of me for carrying Killer. They just better hope I don’t turn him loose on them.

What Killer, what did you say? “Kidney cancer is my bitch!” Well alrighty then. Let’s go to Duke!

Round Two is Over

Here I sit, finally back home, in my leather chair and completely exhausted. We stopped by the office for a few hours late this afternoon to get some pressing things done. I made a few phone calls, mostly to family, but I made one very special phone call to my friend (not my doctor at the present) Dr. John Cabelka. I’ll get to that in a moment. [Read more…]

Five Million Words Escaped Me

Women supposedly speak about 20,000 words per day, a number that is exactly 13,000 more words than the average man speaks during that same day. That means around about 160,000 words are spoken in our office each day by the eight women who are here every day. Another 80,000 are spoken by four other women who are close to me, but are not office mates. So, how in the hell did 12 women speaking a total of 240,000 words per day over a three-week period (which would yield just over 5 million words) keep one single word from getting to me about the fantastically sweet surprise that they, in cahoots with you, delivered to me at lunchtime today.

I knew this was not going to be a typical office lunch today for two reasons: It seemed to be planned days in advance and Rick McKnight, organist and Kiddie clothier extraordinaire, Betsy Covington and Ellen Brooks from the Community Foundation of the Chattahoochee Valley and Cyndy Cerbin from the National Infantry Museum were present. We took advantage of this glorious blue-bird-sky day to have lunch outside on the Houlihan’s patio under two large umbrellas. We ordered drinks and food and eloquent Betsy called us to order. She really did! She does that at Rotary every Wednesday and she’s quite good at it.

She said that the assembled group (Julie Chandler, Callie Sprague, Jenn Apffel, Cyndy Cerbin, Ellen Brooks, Rick McKnight, Betsy Covington, Marquette McKnight, Shelley Dean, Helena Coates) had been talking about the concerns I had blogged about — the one about going for treatment at Emory where I wouldn’t be among friends. My greatest fear has been going outside the comfort zone, surrounded by my friends/healthcare professionals here in Columbus. Betsy continued by saying that the group at the table, with some help from our computer consultant, Gerrit DeWitt, had initiated a three-week campaign to gather my army of supporters to send messages of encouragement to be placed in a journal and signatures on a T-shirt so that anyone who saw me coming at Emory would know I was there along with what Sherrie Watkins called my “traveling Verizon network.”

Betsy handed me a gift bag that contained the fruits of all this labor. First, a colorful T-shirt that says “I am strong, hell of a writer, amazing, beloved, mighty warrior, determined, heroic, courageous, prepared for battle, foul-mouthed follower of God! Secondly, a cd from Rick containing an organ-accompanied choral rendition of the poem “Fight the Good Fight.” And, a journal with photographs, handwritten messages and printed emails from dozens of my friends and regular readers of this blog. I’m speechless — but I have managed to cobble this post together to say thanks to these wonderful friends who joined Jill and me for lunch today and the hundreds of others, like you, who read this blog and are following us on our journey.

I expected this post to be the one that let all of you know about my next trip to Emory to set up the SRS, but I am still waiting to hear about the consultation between Drs. Stapleford and Hadjapanayis about the viability of SRS as a treatment for this spinal metastasis of my kidney cancer. Honestly, I know they’re busy up there, but going into a weekend with questions unanswered just sucks. My blood pressure has responded with a predictable upward trend line that I’m beating back into submission with a new medication.

This post is a big ol’ thank you for the This-is-Your-Life moment I had at your hands at lunch today. If this is a taste of what next March 19 at the American Cancer Society’s 2011 Crystal Ball is going to be like, I’m not sure I can take it. People, let me tell you, I’m smiling like Woodstock right now. Getting to feel the love of all the people who love you while you’re still alive and kicking is impossibly wonderful. I’m moved beyond words and Jill and I are most thankful for this gesture of kindness and support.

I’ll post again as soon as I get the call I’m so anxiously awaiting.

Quiet Period

My last post was April 21. Today is May 31. I apologize for the apparent lack of respect for my readers. A lot has happened since my last post. Most of it you wouldn’t care about. That is, for me, the exciting part. There aren’t any ghastly, life-changing or interesting medical situations to report. When you’re a cancer survivor that’s what you hope for — mundane, just-like-everyone-else days without needle sticks, blood draws and face time with people in white coats. I hope you’ll respect that I just needed some time to forget about medical things like making co-payments, filling prescriptions and lining up tests and procedures. Thanks be to God, I am now winding down my participation in the ASSURE clinical trial (end of 7th of 9 rounds) and my scans are on an every 6-month schedule. The down time has been good for me and for my family. It has felt good to put down the moments of sheer terror and replace them with a few hours of medical boredom. Medical boredom would suit the hell out of me for the remainder of what I plan to be a long, long life. I hope God has that same plan for me. I love it when a plan comes together.

During this down time, I have remained focused on getting back into shape. I still follow a mostly vegetarian diet and Jill and I have joined our fantastic new YMCA and have participated in a number of exercise classes. Yoga, spin, body pump, Zumba and turbo kick classes have been interesting and exhausting. My weight is down about 25 pounds from where I began on 12/31/09 and it is holding steady and dropping very slowly (which is what my nutritionist and my nephrologist want).

I was in the office one day and my phone rang. My friend and coffee guru, John Woodward, was on the other end of the line and he said, “I’ve got something to tell you that I think you’ll be interested in.” That phone call has spawned a new hobby, a big, after-cancer physical challenge and another thing for all my sister-wives at work (Jill, Marquette, Helena and Callie) to nag me about. I’m training for a once-in-a-lifetime two-week river adventure that will begin on my father’s birthday this fall. I, along with 30-ish other people will be paddling from Columbus to the Gulf of Mexico in sea kayaks. We’ll go down the Chattahoochee River, through 2 sets of locks into the Apalachicola River and right out into the Gulf of Mexico. This is exactly what I needed to provide me with a physical goal to really get back into shape.

I accepted the challenge before I had ever even set foot in a kayak. I have now been out 4 times and am getting accustomed to paddling and being inside one of these sleek, tippy boats. In case you didn’t know, the Chattahoochee Paddling Club is a well oiled machine. The club has 40 or 50 members and has a great Yahoo Groups website, a full calendar and holds interesting meetings that teach people about the wonders of kayaking. Here is a link to the club’s website. You can go there and see what is available for people with an interest in paddling.

http://groups.yahoo.com/group/ChattahoocheePaddlingClub/

Last Saturday, the club sponsored a Strokes class, which was a 4-hour training session on the various strokes a kayaker needs to have in his/her arsenal. This Saturday is the Safety/Rescue class where the all-important means to rescue oneself will be taught — and I hope learned. The people whom I’ve met are some of the nicest people I’ve ever met. Having them in my life has added a wonderful new dimension to a life already busting at the seams with good friends. I’m looking forward to the trip and the opportunity to showcase some of the wonders of the river system in Columbus and the Valley magazine. More later on this subject.

One of the added benefits of this trip will be an opportunity to do some bonding with a new acquaintance, Gary Bayer, who is also the husband of Jill’s cousin, Jane Bayer. Jane is newly employed at the National Infantry Museum and Gary is a clinical psychologist. They recently moved here from Memphis and are busy putting their roots back into Chattahoochee Valley soil. Gary is an interesting guy and is all about a trip like this. He is a resourceful adventurer and is a lot of fun to be around. I know we’re going to have a ball on this trip. I also have found a mobile battery for my cpap machine, so it looks like the rest of the campers on the trip will be able to hear a snake sneaking up on them.

Again, thanks for bearing with me during a brief, but much-needed quiet time. There will be a lot to tell as I prepare my mind and body for a 265-mile paddling adventure. I’ll be blogging my way along the trip. Should make for some interesting blog posts. The best news is that there will also be some incredible photography to go along with my writings, because local photographer, Mike Culpepper, is also planning to go along for most, if not all, of the trip! I can’t wait to see what his accomplished, photographic eyes will see.