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!

Duke Update

For the past few months I’ve been taking a dose of Ativan at night as I go to bed to help me sleep. As you can imagine, sleep comes hard for a cancer patient. My mind just won’t shut down at night, especially since I don’t have anything I’m excited about reading right now. I recently started watching “Breaking Bad,” the hit AMC television show about a high school chemistry teacher who becomes a methamphetamine cook. Who could possibly go to sleep after watching that!

I’m an idiot. I did some reading on Ativan and it spooked me. These benzodiazepines are extremely addictive and are one of the most abused prescription drugs. Three nights ago I decided that I wanted to stop having to take a sleep aid medication. So, I did. The next day I felt like I was someone else. Edgy and ornery. (I know what you’re thinking. How could I tell?) I hardly slept a wink that night. It was not much better the next night, but last night — ah, last night — I slept like a baby. This was probably a stupid time to try to do this, with all the stress related to the tumors that have invaded my left adrenal gland AND Strainer, my right kidney. The difficulty of the HD-IL2 therapy for which I’ll soon be evaluated is a frightening thing.

I’ve been anxious about the length of time it has taken for the folks at Duke to get back with us, since I was first contacted by Dr. George on August 5 and we’ve been waiting since then. Today, I finally heard from them. I actually got a phone call today to tell me they would call me tomorrow. Looks like I’m on the radar. A blip that is connected to a middle-aged anger ball in Seale, AL. I know my readers have been waiting with me. When we get the call, we’ll be in the car headed for Durham.

Sweet Home Alabama

What I do know:
• I don’t have tumors in my brain.
• I don’t have tumors in my lungs.
• I don’t have tumors in my chest, abdomen or pelvis.
• I love my wife.

What I don’t know:

• I don’t know the outcome of my adrenal tumor biopsy.
• I don’t know whether I’ll be having surgery or going on Tyrosine Kinase Inhibitor (TKI) therapy.

We have spent 11 days and untold thousands of dollars and we really don’t know much more than we knew when we left Seale, Ala. In a fews days(4 or 5) we will have a confirmation on whether or not the adrenal tumor is the third renal cell cancer metastasis. There is better than a 90% chance that it is. Once we have that confirmation, I’ll be having another consultation with new medical oncologist Dr. Lance Pagliaro at M. D. Anderson (probably via email or phone). I’ll also talk to Dr. Andy Pippas at the John B. Amos Cancer Center, Dr. Janice Dutcher at Roosevelt/St. Luke’s in New York City, Dr. Dan George at Duke University Hospital and the members of the kidney cancer forum of acor.org. The question is whether to go the surgery route or the TKI route. That is not a decision we’ll make on our own.

We miss our home. We miss our sons, our family, our friends, our co-workers our church mates and our pets. Tomorrow morning we’ll be heading back that way and we’ll be back home Tuesday or Wednesday. Sweet Home Alabama, here we come!

 

All Saints Story Buoys Cancer-Fighting Spirit

Let me tell you a story.

During my cancer journey, since May 25, 2009, there have been so many people who have done or said just the right thing at the right time to buoy my fighting spirit. One of those things happened a few days ago. I have waited to share this incredible story until it played out. It fully played out during our All Saints Feast Sunday at St. Matthews in-the-Pines Episcopal Church in Seale, Ala.

If you’re familiar with the Episcopal Church calendar, All Saints Day was November 1. We celebrated the day in a very interesting way this past Sunday. The Rev. Donna Gafford, our priest, challenged us all to come to church on Sunday and bring a story about our favorite saint. This saint could be a real saint, or it could be a favorite relative, a pet or a teacher from our past.

I am kind of a church curmudgeon in that I really don’t like to participate in church. I don’t want to do any kind of interpretive dance (Several years ago that happened at our church once. I’m not kidding.) I don’t like to try to stump the priest. (That has happened, too.) I want to go, hear a great sermon, sing some soul-stirring songs, pass the peace and go home. So, I had decided not to participate in the saint discussion.

Jill felt that I was being unreasonable and that I should reconsider my curmudgeonly stance. As you know, I’m still recovering from two back surgeries and food poisoning. Sunday, two weeks ago was the first time in many weeks that I had been to church. So, I was feeling disconnected and really didn’t want to do the saint thing.

Late in the day this past Friday, Jill handed me a package. I was involved in a payroll situation, so I dropped it on my desk without looking at who might have sent it. After I finished my task, I picked up the package and noticed that it was from an old friend, Kate Nerone. We worked together many years ago at Aflac and I have always had great respect for Kate’s sense of humor, her writing ability — and her legs.

Several years ago, Kate joined me for dinner at the old La Grotta restaurant in the basement of a condominium complex on Peachtree in Atlanta. There is a new version of the restaurant in the Holiday Inn Ravinia on the north end of the city. I like the old world feel of the old place, the mustachioed wait staff who speak very little English and their penchant for strong-arming diners into choosing Italian bottled mineral water over Atlanta tap water.

I had arrived early and was sipping on a drink when Kate strutted in, decked out in a low-cut black minidress, ridiculously high heels and fishnet stockings. She stopped the show that night. She has a habit of stopping shows when she walks into a room. I’ll just say that we got snappy, grade-A service that night. It was quite a lovely evening and it was fun to watch Florio trip over himself to serve us.

I ripped open the package. It contained a box, which I tossed onto my desk, and several sheets of paper. I read the sheets in order, because that is just the way I roll. The first sheet was a note from Kate. The other sheets were an Easter meditation she had written a few years ago for her former sister-in-law Amy Nerone, who puts together the meditations each year for the Chattahoochee Valley Episcopal Ministries, an outreach arm of the local Episcopal parishes.

She also included a riveting poem, which her friend Hope Winsborough shared with her. Here’s where the story gets really interesting: Kate mentioned that there was a box in the package. It contained, she said, a St. Michael medal, which her husband carried as a paratrooper in Baghdad, Iraq. She said that it had protected him and that now she wanted me to have it. The medal was being repurposed to protect me from cancer.

By the way, St. Michael is the patron saint of paratroopers, firemen, policemen, drunkards and fools. You all know I don’t wear a uniform or a badge, but I’m glad I made the cut! Jill walked into my office and said, “What did Kate send you?” I held up the medal, which was then and now attached to my car key. She got that wry smile and said, “Well, there’s your saint!”

Fast forward to Sunday. I walked into church with the poem in hand and the St. Michael medal in pocket. When Donna described how we were going to substitute the saint discussions for the sermon, I asked if I could go first. Selfishly, I knew my story was going to blow everyone else out of the water and I wanted the shock and awe effect of a great story to kick off the festivities.

The time came and I went up to the lecturn and delivered my story. I read Kate’s favorite poem and I told our parish about why I was the new owner of the medal. Needless to say, the story killed! The fact that this wonderful story dropped into my lap just over 24 hours from the time I needed it is just so cool.

The icing on the cake was that Karen Rankin’s favorite saint was me! She delivered a tearful thank you to me for being an important part of their life here in Seale. This service that I was dead set against participating in, turned out to be an amazing love fest with sweet sentiments, great food and fellowship under the pines in our little church. This is exactly why I love our church. It is casual, warm and friendly. I leave there each week feeling great and uplifted and during the summer, I get to wear shorts. How cool is that?