The surely epic bucket list item I won’t get the chance to check off today has finally lost enough pain for me to talk about it. Tonight I would have stood on hallowed concert ground in Morrison, CO with all four of our sons and Michael’s wife, Janice Rice Venable, one of my dearest childhood friends, Craig Hospital Occupational Therapist Perry Ann Williams, and her husband retired landscape architect, Keith Gartin; Principal Architect and Senior Partner Sam Andras, of 2WR Architects, his spouse, educator Victoria Andras, and a host of their friends, band mates, lighting and sound professionals and advisors.
Today we all would have watched our son, Adam Venable/Obeah, perform with Daily Bread as they open for Pretty Lights on the Red Rocks stage. If you know about Red Rocks, you can likely conjure my deep loss for having to miss it tonight. If you don’t know Red Rocks, think Carnegie Hall and and I’ll conjure my deep loss for having to miss this tonight. I’ve had to unwind a 12-day walkabout while in the midst of enduring 2 surgeries, a CT scan, an MRI, some sweet Jesus pain and chronic nausea and vomiting. Thanks to my medical team, everything on that list has been fixed or alleviated. But without time on my side and the sensibility of putting the importance of my health first, tonight, my best hope is to be able to live stream the show, if they can figure how to send it.
Adam, I hope you leave a raw, bloody piece of your soul on that important stage tonight. That it comes from a place so deep that it shocks people to know you kept things like that in there. You have worked hard for this and you deserve your hard work and dedication to make an audience swoon. I will be joined with your spirit in the Colorado breeze. I could not possibly be prouder of you, son, and your brothers and that sold out show will watch the virtual walls come down in the foothills tonight. Now go out there and kill!
Jill and I met with Dr. Pippas and my latest CT scans this week. We heard some good news: looks like my scans are stable. And, we heard some scary news: my colon and my gallbladder are both extremely inflamed, painful and uncomfortable, probably due to several months of daily 60-milligram doses of Cabometyx, a powerful tyrosine kinase inhibitor cancer drug. I am weighing in at around 180 pounds, 80 pounds short of where I was when I took my first dose. I can’t eat. I throw up several times every day. Diarrhea is a daily occurrence and I am scared to death that the tumor in my spine is going to bust loose on me again and do what it can to take my legs from me.
So, that’s what is going on in my world. It is frightening as hell and I wouldn’t wish this on my worst enemy. But, you know me, and my attitude is strong. I pray every day for healing for myself and others who are in this damned boat with me. Specifically, this is what I’m praying for: I need this tumor to get small enough to make the way clear for me to have spine stabilizing surgery and also radiation. I’m sending these latest scans to Dallas, Tex. to the University of Texas Southwestern Medical Center to be reviewed by a surgery/radiation team. I’m also sending them to Munich, Germany to Dr. Michael Kaehler, a renowned kidney cancer surgeon who has taken me on — thanks be to God.
I haven’t posted in quite a while, so I am letting all my readers know that I’m still kicking. I hope you will give me some room as I try to work my way through these latest trials and tribulations. My zest for communication has worn thin. I know it will return, and I hope you’ll join me when it does.
Any time a cancer patient has a scan that doesn’t see active disease it is a cause for celebration. Because kidney cancer sometimes doesn’t take up the glucose used in the PET CT scan like I had today, it isn’t always the best scan to use alone for kidney cancer patients. In these case of the PET CT scan I had today, it was used in addition to a regular CT scan with contrast, which is the one I had last week. Dr. Pippas hoped it would shed more light on the results of the CT scan from last Wednesday.
The good news is the scan today showed no active disease, which can NOT be a bad thing! We are grateful for this news, but we are also cautious. I still need another spine surgery, I think without doubt. But what about the tumor in my spine? At the very least, we have further confirmation this cancer is lazy. Although it is incurable, it is giving me a chance.
What we will do with this chance is left to be seen. I have a lot of research to do now. We have to get the best possible advice from as many smart people as I can get to weigh in on my difficult case. Then we have to make a decision about next next steps. What I hope for is to be able to have the damage the cancer has done in my spine repaired and to come out of that surgery with a structurally sound back.
I am also hopeful to be able to tolerate the side effects being delivered by the Cabometyx and not develop liver toxicity, which will force me off the drug. Although I’m suffering physically from the effects of the drug, my constitution is strong, and I wanted y’all to know we’ve heard some good news today.
The lesson in this for kidney cancer patients is clear: Just like Winston Churchill says, “never, never, never give up.” Having cancer is a full time job. And the pay sucks.
I’ve had a PET CT once before during this past eight years, but it has been a while since that happened. A smiling Tiffany met us in the Midtown Medical Center Radiology Department waiting room to summon me back for the scan. She casually asked me whether I’d had much to eat today, and it sounded like she knew about my eating issues and I still didn’t see what she was getting at.
I told her I had eaten a small service of a couple of different vegetables for lunch. “When did you eat?” she asked. “About 45 minutes ago,” I said as she did a 180 and headed back to the waiting room. “This was supposed to be fasting?” I asked.
I didn’t think these nuclear scans required fasting, so I blew this one. We had to leave and we rescheduled the PET CT for Tuesday early afternoon. Damn! Totally my fault. Should have thought to ask.
Just wanted to post a brief post and let my readers know that we’ve had to push until Tuesday.
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.