Columbus and the Valley

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.

 

Untethered, But Not Unhinged

This post is a stream of consciousness update. Please excuse the lack of my usual attention to the conventions of acceptable language and grammar. I’m banging this one out. Dr. Pippas walked into our exam room this afternoon at about a quarter ’til 6 and we got down to business. I think today was our longest clinical conversation of the entire 8 years of our doctor patient relationship. This brilliant, good man has never disappointed me. He called us late last night with the sole purpose of giving us a night of good rest in advance of our meeting today. He knew a word from him and the better-than-we-thought-it-would-be news about my latest wrasslin’ match with kidney cancer.

We talked for over 40 minutes, not rushed, open to our questions about what we’re dealing with, what courses of action we could see coming, how to beat it again. His usual greeting, a pitch-ascending, “Michael” then he tips his head back, engaging his bifocals to get a sharp look into my eyes. He gets right in there, knowing the eyes are the window to one’s soul. I answered back, “Andrew,” and thanked him for being the kind of physician who calls a worried patient after a brutal day at the office seeing no telling how many other worried people.

I know we’re special to him, too. We have overcome seemingly insurmountable odds together, to date avoiding life-altering, permanent physical debilitation. I’ve had multiple surgeries (left kidney radical nephrectomy, lymph nodes, corpectomy of L2 spinal vertebra, laminectomy (8 weeks later) from L2-L5, thyroidectomy, knee scope, 32 grays of radiation beams and countless hundreds of needle sticks, claustrophobic rides in giant metal tubes, gallons of barium, bucketsful of pharmaceuticals. Yep. I knew early that my job was to stay alive until something that can cure me comes along. Already there are many more drugs than were available in mid-May, 2009. We have choices, based on my case.

I made a decision on June 9, 2009 to write our way through this. Last time I tried to measure my writing output, I was north of 300,000 words. I tried to tell the story the way it went down. From December 5, 2010: “Back From the Snake Pit.”

I wanted to leave electronic breadcrumbs for the ones coming behind me. Kidney Cancer is a tough diagnosis. Faith in God, trust in your medical team, support from your friends, understanding creditors, a rock-solid marriage, children who tested us as parents, but who are always present, and loving, and engaged in our familyness. Those four sons possess characteristics that indicate our every prayer for them to be smart, kind men has been granted. What a blessing it has been to have spent relatively few hours of our lifetime as parents worrying that one of them had gone off the rails and were going down a bad road. Today I realized with complete clarity how much more difficult these last 8 years would have been if one or more of them had gone bad.

“Make good choices.”

My spine is being attacked by an aggressive, fast-growing renal cell carcinoma metastasis in my L1 vertebra. The screw that Dr. Michael Gorum put there on August 19, 2011 during spinal fusion surgery is now embedded in this new tumor. Regardless of what procedure/medication is used to kill the tumor, I will imminently require another spine surgery with longer hardware that can bridge up into my thoracic vertebrae in search of solid bone that will hold a screw. We haven’t met with Dr. Gorum yet, so this is our and Dr. Pippas’ discussion about what will be needed. The tumor has broken through the outer lining of the vertebra and my spine is dangerously unstable at the moment. No horseback riding he says. Don’t fall he says. Some quick decisions need to be made and we need them to be the right decisions. No pressure.

Tomorrow I’ll send several packets of information to several kidney cancer specialists for an independent review and some remarks on how they’d recommend we proceed. Thank you Dena Battle and KCCure. At this moment, I’m not sure where treatment will take place. If we can do it here, we’ll be at Midtown Medical and the John B. Amos Cancer Center. If we need to travel anywhere but outer space, we’ll be traveling. We’ll be praying for the right people to be placed in our path. At this moment, more so than at any other crossroads of my medical life, we will be in a state of complete faith, untethered, but not unhinged. Enveloped in God’s arms with an army behind us.

We’ll see Dr. P in 10 days. The plan will be in place by then. We left Andy’s office today encouraged by his soothing words, his sincere grief for our plight and his heartfelt hope, conveyed in looks, hugs and purposeful touch. I love him for what he has done for me and for our family. I still have both of my parents and I hate cancer for flipping our lives upside down. Jill’s mom, Betty Owens has had to live with losing a son, and because we have sons, I can imagine the emotions that our parents are living with. This isn’t the way it should ever be. It hurts too much. I want to live so that my when my parents leave this world, they will leave it without ever having known what losing a son feels like.

I want this post to speak to Ann and John: Thank you for giving me everything I needed to make it to today. You have given Eric and me a good name, a joyful home, the gift of your strong marriage and spiritual, financial and emotional support in good times and bad times. There will more good times. I’m sure of it.

Jill is by my side. Always. When she grabs my hand will her thumb or mine be on the outside?

Let’s go write our next chapter.

My Middle Initial is M.

Cancer patients don’t fare well when they’re running without a plan. I’m running. And, at this moment, there is no plan. I have a new renal cell cancer metastasis in my spine at L-2. This is the worst possible place for a new metastasis, because it is likely that I have maxed out the amount of radiation I can have at that place on my spine. After all, my middle initial is M., which surely must stand for Murphy, as in Murphy’s Law: “Anything that can go wrong, will go wrong, and at the worst possible time.”

Dr. Pippas has scheduled a nuclear bone scan which will be done this Friday. It will show whether there are any other bone metastases in my body. This coming Tuesday, March 14, I will have a CT scan of the chest, abdomen and pelvis with contrast to determine if there are any soft tissue mets anywhere.

Once these files are in hand, we’ll meet with Dr. Pippas on Wednesday of next week to discuss options. In addition to Dr. Pippas’ input, one of our angels has arranged to have my files reviewed by some world-class renal cell cancer physicians both in Europe and around the United States to see what they deem is the appropriate next steps for us to take. We’ll take all this information, along with our conference with Dr. Pippas and Jill and I will make decisions about what is next.

Right now, there are way more questions than answers. We intend to flip that around just as soon as is humanly possible. Primary RCC tumors can grow at about a centimeter per year. Metastatic disease can grow at the rate of a centimeter per month! There is not much room for error and NO TIME to screw around making a decision. We’ve got to make the perfect call, and put a plan in place right now.

Jill and I just got back in the office from a long walk through downtown Columbus. Collecting our thoughts, expressing our love and commitment to each other, even in the face of fear and anxiety about what lies ahead. On this day, International Women’s Day, I am so grateful to be bathed in the love of an incredible spouse, a wonderful mother-in-law and a lion of a mother.

We expect some rough days ahead and I’m asking in advance for your prayers and supplications on our behalf. Our sons are in our foxhole along with a solid team of medical professionals and an army of thousands of supporters and prayer partners. With all this, we surely can’t lose this battle now. If you’ve been a regular reader of this blog, you know that increased fear equals increased blogs posts. I invite you to come along. This blog is as real as it gets when it comes to kidney cancer. I’ll try to stay up to date with posts about what is going on. This is the best way for us to communicate with friends near and far.

Angels Are Part of the Magic, and Today I Need the Magic

If you’ve never had cancer, you likely won’t be able to appreciate why this day in early February was so special for me. If you’re lucky, you get to live with cancer. And, if you’ve been one of the lucky ones, you’re living among angels, because angels are part of the magic, they make the stars align, they put you in front of just the right physicians and caregivers, maybe the only ones who know what to do to help you live.

Several weeks ago, Jill and I met one of our angels.

If you know us, you know our story. If you’re new to my blog, there are a couple hundred thousand words here going back to June 10, 2009 when I had my first encounter with renal cell carcinoma (kidney cancer or RCC). Very shortly after my diagnosis, Susan Poteat reached out to me after I posted a plea for help on an email LISTSERV named acor.org, now called smartpatients.com. I had done enough research to know this cancer was rare and dangerous and I desperately wanted information that might help me live.

Susan is a locum tenens medical physicist. Locum tenens means “to hold the place for, to substitute for.” So, she travels to a clinic or hospital that has a medical physicist shortage for one reason or another and fills in for them on a contract basis until the person returns or the job is filled. She works in radiation oncology, with oncologists, surgeons and technicians watching over the numbers, radiation dosages, the patients internal organs, metabolic rates and blood flow.

In addition to her sparkling intelligence, she has a servant’s heart for people with RCC because her medical physicist husband, Gary, is also a renal cell cancer patient. Susan has been there for me more times than I can count over the past eight years since cancer came. For eight years, we have talked on the phone, emailed and texted, with information flowing in only one direction — toward me. We have talked when I was afraid I was going to die and when I was flying high from a stint of “normal,” those days when cancer seemed to be leaving me alone. She has been a great listener, a steady source of good, useful information and a beacon of light during days that were sometimes so dark I couldn’t see the end of my nose.

I started writing this post a few weeks ago, the day after we met Susan and Gary for lunch here in Columbus during our visit. I put it aside, to come back to and information I just received today made me get this back out and finish the post. Because today, I found out that I have another metastasis in my spine. That is really all I know at this point. More questions than answers. Is the spine the only place where I have active disease? Is it is the same place as last time? What about my lungs? My brain? Are there mets there, too? Do I go back to systemic therapy? Is radiation alone going to do it, or can I even have more radiation at the site where there is active disease?

I’ll know the answers to all these questions and many more when I have definitive CT and bone scans. And, when I get those answers, I’ll be posting about what we found. I’ve known for eight years that there was a high probability that this day would come. Knowing the day has arrived is still just as shocking as I thought it might be. Not so much fear, at this point. Just anger, and that might not be a bad thing. I know all the prayers and support we’ve received have served us well these past eight years, and with this post, I’m looking you right in the eyes and asking for their continuance.

We will, once we know what we’re dealing with, run straight at it. That’s the way we roll around here. I’m expecting this to be another milestone which we’ll conquer. In the meantime, I’m going to be busy staying busy.