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.
I am a seasoned cancer patient. Something I never wanted to be. I am able to withstand painful needle sticks without fear. Something I never wanted to be able to do. I am engaged in a fight to live and to enjoy a robust life. Something I never wanted to have to deal with.
I feel the urge to talk about what I’m feeling today. I’m not phishing for pity, just telling it like it is. Sometimes it helps me in a big way to see a real account of the incredible privilege it is to be able to live with cancer, as opposed to it taking you down quickly. Without any doubt, the pain and suffering with which I, and therefore my family and friends, deal with because of this disease and the powerful medications I take, the gift of living that I’ve been afforded is a great victory.
So, let’s talk about positives: If you’re following, you know I had a CT with contrast of chest, abdomen and pelvis yesterday. The radiologist read the scan and so did Dr. Andrew Pippas. They read the scan. I read the report. We are all a bit flummoxed about this disease process. So, Dr. Pippas has ordered a PET CT, which is a nuclear scan to detect active disease. That should give my medical team enough additional information to be able to make recommendations about future treatment.
I’ll have the PET CT this Friday, May 26 at 1:45. What we hope to see is that the areas where we have concerns — my spine from L1-L3 and the spinal canal, and my remaining kidney which has a lesion that we’ve watched for 8 years, are not exhibiting active disease. That place on my remaining kidney is changing, based on the introduction of Cabozantinib, the drug I’ve been taking for about seven weeks. Changing into what, we don’t know at the moment.
I’ll share what we learn from the PET CT over the coming weekend. I hope we’ll have a more definite idea of what is happening and what we’re going to do about it.
My biggest issue in the quality of life department is that I’m hoarse as hell. 20% of the people who take CABO get extreme hoarseness as a side effect. I definitely am one of those 20%. Also, I’m dealing with some hand/foot syndrome. I have blisters on both of my feet and walking is difficult and painful. I’ve lost right at 60 pounds now and eating continues to be challenging. Also, my blood pressure is elevated and we’re concerned about that. High blood pressure is very dangerous to me because I only have the one kidney. This is a tough road we’re on right now.
Having all of my readers with us in spirit along the way has been a wonderful gift to Jill and me. I hope I can keep on track with posts as information becomes available. Thank you for your concerns. Thank you for your prayers. Thank you for your kindnesses. We could not be more grateful for all of you.