Columbus and the Valley

Update on Cabometyx and Side Effects

Tom Clancy books open like a flashbang, they settle into 1000 pages of character development that feed straight into a jaw-dropping final chapter. If this cancer I’m so grateful to be able to live with was a Tom Clancy book, I would be in the character development phase. My Episcopalian peeps know it as the Green Season, the Catholics call it ordinary time. My altar is green. I am between tests and procedures, much like the Church is between major feasts, the altar is always green from the Monday after Pentecost through the Saturday before the First Sunday of Advent.

I’m so fortunate to be taking Cabometyx, a hope-inspiring, relatively new drug. I am 35 days into Cabo and the side effects are beginning to lay claim to pieces of my life, my body and my mind.

My last Green Season was my fifteen months with Votrient. It made me as well as I’ve been since I was diagnosed and as sick as a the bad end of a four-day drunk. So, I know about the Green Season. I know about the low times when you’re waiting to know if the poison you’re pumping into your body is killing its target cells. The time before the scan. The time between the big events.

Like I said, “My altar is green.”

People who have to take these drugs know that there are specific side effects that the drug may elicit in patients. Those side effects are outlined in the drug literature in a usually long list. In my mind, it is a lottery. Everybody gets a ticket, or maybe multiple tickets if you have certain medical proclivities (an easy to upset stomach, a quick gag reflex….etc.). Mother Nature reaches into the tickets and she pulls out the side effects with which you’ll be afflicted. Mwahaha! Man plans — God laughs.

Before I write another word: Despite the hard fact that TKI drugs and Mother Nature have visited me with diarrhea, vomiting, nausea, dry skin, bleached hair, dizziness, painful blisters on my feet, sensitive hands, insomnia, compromised taste buds, an aversion to meat, epic weight loss, loss of my finger nail cuticles, white circles around my eyes, temporary liver issues, elevated blood pressure, exposure to scan contrast media and dyes and other generally awful things — I am nowhere near giving up. I have too much to live for during what should be my most fantastic phase of life. An incredible life mate, four equally wonderful sons, Jill’s mom, both my parents, companion animals, church mates, friends, work colleagues, music, art, watching Columbus, Georgia thrive and become a great second-tier city. All these things add up to me wanting as normal an existence as I can muster.

So, I’m studying, asking questions and consulting with Dr. Pippas to make sure we continue to make great choices about how to treat this disease. I met with Dr. Pippas this afternoon to discuss my latest lab results. The numbers that we’re most concerned about relate to how my liver is managing the drug therapy. Today, despite my liver enzymes being in a stable place, my bilirubin is higher than Andy would like it to be. I’m slightly jaundiced and because of that, we’re going to have to make some adjustments to my dosage of Cabometyx. Andy is doing research and will make a recommendation in a day or so. This is something I had to do during my 15 months with Votrient. More than once.

My scans have been set for Tuesday, May 23. This scan will tell the tale about how I respond to Cabometyx. I’m hopeful — extremely hopeful — that we’ll see significant shrinkage of the spinal tumor, enough that surgery and radiation is possible. If that is the case, we’ll be making plans for being seen by Dr. Carlos Bagley and Dr. Robert Timmerman at University of Texas Southwestern Medical Center in Dallas. This is the neurosurgical/radiation oncology team that has risen to the top of my research as the best place for us to go. Thanks to Susan Poteat for providing input into that decision.

We continue to feel like we’ve made the right choices all along this long eight-year season of cancer. I am confident that I’ll still be bitching about how long we’ve had to deal with this in 2025 when it will have been 6 years of this. From my lips to God’s ears.

As things become more clear, I’ll share them here. From the bottom of my heart, thank you for reading this blog, being concerned about my wellbeing, and for showing love and care to me and my family.

 

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?