Columbus and the Valley

Time to Grab the Go Bag

I’ve been quiet here since August. I know you’ve noticed.

I need to talk and I hope you’ll listen.

We’re at the end of another holiday season “they” said I wouldn’t get, another birthday just passed they said I’d never see. These moments would have knocked me down when I was a cancer boy. When I toddled through the early days — a wobbly-legged cancer foal — one of these big, important days would come around and I’d fairly spend the day all weepy, with a mind that just wouldn’t stand up on its own. I drew such incredible strength then, as I do today, from Jill’s touch, from the ever-present and ever-strong cloud of witnesses who have walked with us every step of the way. As I look at my reflection today, I am strong in ways and in places where I didn’t even know I had a place.

Strength is good. Especially now.

When cancer comes for you, you have to grab everything you can carry, throw on some clothes and snatch your go bag off the table as you fly out the door. You’ve gotta be light on your feet. Being a cancer patient is a full-time job. It requires study. Although I understand that some patients don’t want to have an opinion about their condition or care, it is my deep conviction that only a fool would relegate 100% of the responsibility for their condition and care to any single other person, even a well-trained doctor. To have a shot at surviving, a patient must be proficient in math, be a good negotiator, be organized and be able to speak insurance. You also need a patient, loving mate and a faith family.

What you need more than anything else is a keen sense of your own body, a strong curiosity about science and medicine and a snarling — almost rabid — ferocity to live.

I recently lost a friend who possessed every one of the qualities of a stellar cancer patient, but who still lost her fight. To know that you can be in the game, in as good shape as possible, rested, nourished, aware and yet still have something unforeseen take you down, that, ladies and gentlemen is a solid testimony for living every day like you are dying.

We leave in a few days on another medical vacation because I’m one of the lucky ones. One of the very lucky few kidney cancer patients who has cobbled together a way to “live” with it. In a recent visit with Dr. Andy Pippas, we talked about all the decisions we’ve made together. About how hard some of them were, and about how fortunate we’ve been to have made mostly the right calls over this almost nine years of living with cancer.

I have an astonishing network. Astonishing because of the wonder, through social media and new technology, of having so many robust relationships with people who I have never met face to face. The physician Jill and I are going out to M. D. Anderson Cancer Center to meet was chosen for our case by an angel doctor who took an interest in us. Professor Dr. Michael Staehler has never met me, yet he’s reviewed my entire medical history with RCC and has discussed my case with with Dr. Lawrence Rhines at M. D. Anderson Cancer Center. Dr. Staehler runs one of the world’s premiere kidney cancer clinics in Munich, Germany and he took an interest in my case because one of our kidney cancer mentors asked him to help us.

We are hopeful that Cabometyx has shrunk the tumor in my spine enough to allow a skilled neurosurgical team to remove the tumor and repair the damage caused by kidney cancer. It is my most prayerful hope that we’ll get this kind of feedback from Dr. Rhines, after he has a chance to meet me, and review whatever tests he feels he needs to make an educated diagnosis of the situation.

If you’ve been a follower of this blog, you know that in times of trouble I write to help get myself through it. So, with trouble ahead they’ll likely be a few thousand words to go along with it. I ask that you also continue to pray for all of your friends, and not just those of us with a dangerous illness. Part of the reason I write is to give folks a glimpse of what it is like to have to negotiate the dark waters of a cancer diagnosis. I hope that you’ve also been able to see the beauty that lies in the clear fact that if you’re open to love and a connection with your fellow life travelers, almost indescribable joy usually follows the pain. I’ve found that when I focus too much on the pain, the joy passes me by.

I have an MRI scan scheduled for 6:15 p.m. CST on Wednesday and we meet with Dr. Rhines on 1/11 at 11 a.m. Depending on what we hear, we’ll at least have a solid idea about how effectively I’m responding to Cabo and whether we’re still on a good track to mitigate this issues in my spine.

One of the attributes of a good cancer patient is a chameleon-like ability to remake yourself each time your physical being forces you to become something different. I am unable to do anything physical right now, so I have spent the past eight months learning how to trade stock options.

I have found a local teacher, someone who has taught me how to read stock charts, about the Fibonacci sequence and how it relates to stock price fluctuations, about how to establish my own trading rules and follow them and how to utilize the stocks that Jill and I already have in our Roth and traditional IRAs to, with relatively low risk buy and sell puts and calls to make additional income as we near retirement.

I’m not going to say much more about stock options right now but trust me, there is much, much more coming from me on this topic. There is a limit on how much of your assets you can place into your Individual Retirement Account each year. But there is no limit on how much you can earn on the money you’ve put there. I have found a better way to grow that money in our lives. And, because only a tiny percentage of the people I’ve engaged in conversation about this subject during the past eight months knew anything about it, I’m going to make it my mission over the near future to make sure everyone within the sound of my voice and who is interested, gets a good, solid education on what surely must be one of the financial world’s most closely-guarded skill sets.

If you think you’re going to be interested in hearing more about how to trade stock options to generate additional income go ahead and pick up a copy of the book, “Understanding Options,” by Michael Sincere and read it. I was asked to read the book before I attended a two-day weekend training class here in Columbus to learn the basics of options trading. Prepare to be challenged, and intellectually stimulated!

 

 

PET CT Update

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.

Tales from the Food Desert

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.

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.

 

Cabozantinib Arrives Tomorrow

This is a short note to let my readers know that the drug that has the best chance of making a dent in this spine tumor, Cabozantinib, arrives via overnight shipping tomorrow! I will begin taking a 60mg daily dose of this powerful drug and we’re hoping that it will begin to kill the tumor in my spine and pave the way for me to be able to get better. Whether or not, a smaller tumor would make it possible for another spine surgery to remove the screw from the tumor and restabilize my spine, is still up in the air. We will likely go soon to University of Texas Southwestern Medical Center in Dallas for a surgical/radiation consultation, so that they’ll be onboard with my case in the event surgery/radiation becomes a viable option.

I know that there are side effects with all of these drugs and this is one I haven’t taken before, so like we’ve done so many times before, we’ll be Star Trekking it. Going boldly where we’ve never been before. Based on my research, the combination of this promising drug, Cabozantinib, and a solid surgical/radiation plan will provide our best hope for me to return to health. I have purposefully avoided the list of side effects of this drug. I’m sure it’s not pretty. Please bear with me in the upcoming days and weeks. I’m sure there’ll be some physical changes like hair color and weight loss. I’m sure there’ll be some GI issues, too, so don’t stand too close. I may throw up on your shoes.

We are thankful that Dr. Pippas was able to make my case with Blue Cross Blue Shield of Alabama and we’re getting a shot at this drug. It has shown remarkable results in a lot of folks with kidney cancer. While I’m being thankful, let me say again how much Jill and I and our family appreciate all the love, cards, encouragement and concern as we embark on yet another chapter in a our lives, living with cancer.