Here I sit, finally back home, in my leather chair and completely exhausted. We stopped by the office for a few hours late this afternoon to get some pressing things done. I made a few phone calls, mostly to family, but I made one very special phone call to my friend (not my doctor at the present) Dr. John Cabelka. I’ll get to that in a moment.
I feel the need to post this to bring some closure to the events of the past several weeks, since we learned of my kidney cancer spinal metastasis on October 11. I was talking to Callie Sprague, one of my office mates this afternoon about the extreme pressure Jill and I have been under since we learned my cancer had returned. In my research I have found that a primary renal cell cancer tumor grows at the rate of about one centimeter per year. My four-centimeter tumor had likely been growing for three to four years.
A renal cell metastasis, however, can grow up to 3 centimeters per month! I saw the August 25th CT scan, where nothing was visible with the naked eye in the L-2 vertebral body. I also saw the October 4 scan where the then 2-centimeter tumor was clearly visible. I have been a ball of nerves since that day. Frightened, demanding that my medical team move as quickly as possible to get this thing out of me.
I made my own appointments, called in every possible friend who had influence at Emory and cussed and yelled my way onto a radiation oncology table on Thursday, December 2. It took nine weeks from the day I was told about the metastasis in my spine and the tumor has already been present for, at the very least, six weeks before that, for a total of 15 weeks, or almost four months of possible out-of-control growth.
I want to say here and be clear, Dr. Andy Pippas, Dr. Raj Alappan and Dr. Glen Vahjen, my team of doctors in Columbus, made themselves completely available and took phone calls from my Emory radiation oncologist in Atlanta, Dr. Liza Stapleford. She remarked to me on more than one occasion that she was so impressed with the care I have received here and the speed at which these wonderful medical professionals have responded to her needs for information on my case.
Jill and I have been aware all along that we were running a race against this cancer. Despite my best efforts to put on a happy face, I have been grinding like a maniac to get to the procedure that finally happened yesterday, although thanks to what our friend, Dianne Henry called better living through chemistry, bits and pieces of the past couple of days aren’t exactly clear to me right now.
Cancer is maddening. It is as simple as that. And it is especially maddening if you are smart and assertive. Medicine moves like molasses. I don’t. If I happened to be one of those people who concurred with every opinion of all my doctors, didn’t question them and didn’t push them, I really don’t know where I’d be right now.
Renal cell carcinoma is a different animal. It is not easily understood by any medical professional who doesn’t treat a LOT of it. It is a sneaky autoimmune disease that likes to metastasize to the brain, bones and/or lungs. If these metastases get ahead of you and out of control this cancer will kill you deader than hell. So, I’m pretty touchy about this right now. I hope I’m newly NED (no evidence of disease) — again. I hope that tumor in my spine was murdered yesterday with a whopping 16 grays of radiation in a single dose. I hope that Dr. Pippas and I will be able to agree on a scanning regimen that will make sure that we, just like this time, found the offending tumor in a timely enough manner to deal with it while it was just a single metastatic event.
Dr. Pippas wants to see me just as soon as I can get in to see him, now that I’ve had the radiosurgery. I love Andy Pippas. I really do love him. He has touched me and my family in so many ways as we’ve walked this awful journey. I promise you that he does not have an ego, when it comes to my care. He is a team player who is completely in this for what is best for me and my family. One cannot ask for more than that from his doctor. I have been a demanding lunatic during some phases of my treatment and it looks like my ranting will continue.
I will be in his office soon, but at his suggestion, we will also be making an appointment with an RCC specialist to assist us with my ongoing care. I have five in mind right now: Dr. Janice Dutcher at Roosevelt Hospital in Midtown Manhattan New York, Dr. Dan George at Duke University Hospital in Durham, NC, Dr. Robert Figlin of Los Angeles’ Cedars-Sinai Cancer Center, Dr. Robert Motzer of Memorial Sloan Kettering in New York and a doctor at M. D. Anderson, whose name I don’t know yet. Whichever of these great renal cell cancer specialists we choose will bring to the table the experiences they’ve gleaned treating hundreds of cases of RCC. With only 50,000 cases of RCC per year in this country, it is rare to find someone who sees more than five to 10 cases per year of this disease.
John Cabelka is my hero right now. Even though I am not his patient, he is my friend. He has born the brunt of most of my acerbic rants during this past 4 months. I never, ever thought I’d have to utilize radiation therapy for this cancer. Most of my early research told me that RCC didn’t respond to radiation. RCC mets do, but since I never planned to have to deal with this cancer after my successful June 11, 2009 surgery, I was flat-footed and stupid when it came to radiation.
I called on John Cabelka to give me a high-intensity education. He stepped up and we traded a flurry of emails and telephone calls. Early on, I thought I had overstepped my bounds and lashed out at him for sending me an email that I thought sounded like “medical bullshit” and that he was patronizing me and not answering my questions like a friend would answer a friend. Not only did I not run him off, he drew his verbal sword and we went at it. I will forever be grateful to him for being a good friend and a great doctor to me. I was able to get this “best practices” treatment because of the knowledge I got from Dr. John Cabelka. And the best news is we’ll have this “Star Wars” radiation therapy here at the John B. Amos Cancer Center in a few short months. When I talked to John this evening he said, “Mike, I wish you could see the smile that is on my face right now. This is what makes me glad I chose to be a doctor.” I said, “John, I wish you could see the tears in my eye right now. I will always be grateful to you for what you taught me over these past few weeks.”
For the first time in 15 weeks, I will sleep tonight without worry. Jill and I and our great team of physicians have fought this thing out and we have done our collective best. We will revel in another victory against this disease. Beginning tomorrow, I will be making plans to take the next step because I will not let this disease get ahead of me. I will not. It will not sneak up on me. If it comes, I will be watching it come up the road and will be waiting with the proper weapon when it gets within my grasp.
When I walked into the treatment room at Emory Midtown, I walked in with my autographed T-shirt and my journal. I showed them to every single one of the people who laid a hand on me. (At least I think I did. The 2 mgs. of Xanax probably prevented me from really even knowing how many people I saw that day.) Let’s just say here that I really did show them to all those people. I wanted them to know that the guy there were tormenting is loved by many. I felt all that love this week. It will go with me for the rest of my life and I am so grateful for it.
I know that during our quarterly board meeting on Thursday, my fellow board members of the Community Foundation of the Chattahoochee Valley were praying for me during the time I was lying on that treatment table. Friends of many faiths have been lifting up our names at their churches and in their homes. My Rotary club has responded with prayers and good wishes for my recovery. Members of our Episcopal parish of St. Matthews in-the-Pines in Seale and our sweet, sweet office mates have been solidly with us during this phase of our journey. I love all my sister wives at the office. Don’t act like you haven’t heard this story!
Betsy Covington asked me on the phone this afternoon when I called her to see how the CFCV board meeting went, “What are you going to blog about now that this cancer scare is behind you?” I promise there will be other content coming, but all of this is so fresh right now. Eventually, I will put this down. But, judging from the enormous amount of traffic to read this blog, there are people all over America and in England, Spain, Estonia and a few other countries who are interested in what is going on with me and my family. If you’ll keep reading, I’ll keep writing. Every word I write will help someone else who is about to take a terrified first step with kidney cancer.