Columbus and the Valley

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.

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.

 

408 Hours

This blog was never intended to make a soul feel sorry for me. I started it as a communications channel for friends and family a couple of days before my nephrectomy. Once the surgery was over and I was in throes of sickness, still writing, and people started getting touch with me, something changed about my blog mission.

Cancer is a lonely disease. Even surrounded by families and armies of friends, the patients spend a great deal of time inside their own heads. Any shred of information about something that might make you well, save your life, make you feel better, keep you around, is precious. I have made a bunch of friends, who were that beacon of knowledge and hope for me from when I was a young pup of a cancer patient. I have spoken/written/texted some of them as early as today at lunch. They mean a lot to me.

So, I changed my tune and decided to go ridiculously beyond a communications channel. I wanted to write about living with cancer. God knows more and more people every day are forced to figure that out. It isn’t an easy process and being able to see into the lives of people who are further down the road is a good thing.

I get enough feedback to know this blog has struck a chord with my readers. This is why I write.

Oh what a difference 408 hours make. 408 hours ago I got the news of the spinal tumor. After multiple times of getting this news, the

• Shock and awe

• Sadness

• Fatalism

• Anger

• Research

• Resolve

stages are sped up. And because they take place in such a compressed timeframe, they’re more intense. This time it took me 408 hours. I think my last few blogs posts have borne that out. A half hour ago I was on the phone with Dr. Andy Pippas — the fifth time we’ve spoken today. He joked with me! We laughed and had a little best-friends-over-a-beer banter. Blue Cross Blue Shield of Alabama had an issue with the Cabozantinib prescription. Even though EVERYONE I know in the kidney cancer community, those people in the trenches keeping people alive and thriving, know that this drug is particularly good medicine for RCC patients with bone metastases.

Ain’t nobody got time for that.

My call this afternoon was the good Dr. Pippas recommending that we go back to the horse we know. Yes. I had come to the same conclusion. I’ll be starting Votrient right away. Hello 35-inch waist! And that athletic cut suit I bought from Chancellor’s — the same size I wore when I walked the hallowed halls of Hardaway High School — is waiting in a bag in my closet. I got a haircut today. Emily has never seen me with white hair. I showed her a picture of what lies ahead.

What has snapped me out of my funk? Today it was music. I’m listening to a snappy ’80s Spotify playlist that Jud Richardson posted. Today has been a productive day. I’ve got my emotional legs under me, steeling for the fight and expecting to win. This is such an emotional ride. Every day as I write these posts, I can’t believe where we’ve come from. Wicked turns on a life-sized rollercoaster.

I’m writing it because I have to.

Thank you for the life-affirming displays of love. Thank you for the prayers, calls, the cards, the incredible quotes, the offers for plane rides, Go-Fund-Me accounts. We’re not there. Not saying we won’t get there someday. But it is not today. Damn, I’m beginning to think I might’ve had a good career as a televangelist. I’m also thinking I might need to get Jill to take my computer away from me when I’m in my either of my Sad or Fatalistic stages.

Thank you for following along and we seriously appreciate your prayers and wishes for my health and wellbeing.

Life, As I Know It, Is About To Change

When you have a relatively rare disease, the size of your network is of the utmost importance. Renal cell carcinoma is a rare cancer and a top medical oncologist in a community clinic setting like we have here in Columbus might see less than 10 cases of RCC per year. I just hung up from a 20-minute telephone conversation with Dr. Michael Kaehler, an RCC specialist in Munich, Germany who sees over a thousand cases of RCC every year. Dena Battle, president of KCCure, a recently launched national kidney cancer foundation with a goal of promoting research and patient care for those of us with this disease, was able to get Dr. Kaehler to convene a group of neurosurgeons and radiation oncologists in Munich to review my case.

My phone conversation with him this morning was both exciting and terrifying. The most terrifying thing I learned is that this tumor is considerably larger than we had thought. At over 10 centimeters in length, it spans my spine at L1-L3 and it is growing around my spinal nerves. More toward the exciting end of the informational spectrum is finding out that although my back is literally against the wall, there is hope for me. He sees a combination of surgery and Cyberknife (radiation) that can be brought to bear to keep the tumor in check and keep my “tumor burden” in a manageable state over time.

The first order of business for me is that I have to begin taking another TKI (tyrosine kinase inhibitor) drug (oral chemotherapy). I was a strong responder to Votrient, the drug that turned my hair white and caused me to lose 100 pounds, but it also shrunk the tumors in my spine and in my adrenal gland. IF (and this is a big if) Cabozantinib, the new drug I’ll be taking shrinks my spinal tumor, we’ll attempt to keep it at bay by using a combination of surgery and Cyberknife to keep it in check. At some point, if the tumor continues to encroach upon my spinal nerves, then I’ll have to have a surgery called a dorsal vertebrectomy to give my spinal nerves more room through my spinal canal.

Knowing what I know about what life is like while taking a TKI drug, I’m going to eat everything that I love over the next few days, because once the drug takes hold of me, my tongue will be turned into a one-trick pony and will only taste aluminum. Everything from my heavenly lasagne to a big juicy medium rare steak will only have one taste — aluminum. I will be nauseated and will experience diarrhea on a daily basis and it will take every bit of restraint I have to be fun to be around. That is my goal, however, because I believe that my attitude has contributed mightily to the fact that I’m still alive. Attitude, along with a loving God, loyal friends, an incredible family and a mountain of prayers.

The rest of my life, however long it turns out to be, will be a study in divine intervention, medical science and perseverance. The only part of this I can control is the perseverance, and making sure I am able to be seen by doctors who know my condition and have the mad skills to attempt to defeat it, regardless of where in the world we have to go to see them. I don’t know how we’ll afford all of this. We have great insurance, but insurance doesn’t cover trips to Germany, if we end up having to go there. We’ve made it this far, with our small business resources and faith. I don’t expect that to change going forward.