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.
Debbie Seeley says
You are 100,000% correct in that your attitude has gotten you this far. Keep standing tall and beat the holy s*** out of this bastard that insists on trying to rob you of your beautiful life. We are all here for you my friend! Love and prayers to you, Jill and your lovely family!
Susan Chriss says
Mike, my thoughts and prayers are with you. I know first hand about this deadly disease and what it does to a love one. Hang tough!
Bebe Bahnsen says
Mike, I am glad you spoke to the doctors in Germany. I know you fight a difficult battle and I deeply hope this next fight will be as successful as the others.
paula acton says
Mike–I’ve thought of this Camus quote every time I’ve read your recent posts: “In the midst of tears, I found there was, within me, an invincible smile. In the midst of chaos, I found there was, within me, an invincible calm. I realized, through it all, that…In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.”
You’ve got an “invincible summer” within you Mike, along with a tribe of prayer warriors–keep pushing back! Hugs, love and prayers to you and Jill.
Dale Stutchman says
Mike,.
We will keep you in our thoughts and prayers. Keep on fighting and God be with you and yours.
Marianne says
Good luck Mike! Chin up! And God bless Dena!
Rose Maree Ogle says
Mike, I just want you to know that I have enjoyed reading your columns for years and now I appreciate and enjoy reading your diary as you proceed with health care. It’s so honest and easy to understand. And, it’s rare to have someone share this information about learning, searching, making decisions in a personal way. Thanks
Wanda Farish says
Every time I read one of these posts, our first-grade class comes to mind. Sometimes, I long to be that care free again! Keep climbing, Mike. You will be the one who rises above and stomps this
disease!
Susan Wiggins says
Mike, once again I’m glad you have a plan (even knowing the negatives) and the potential opportunity to whip this thing again though surgery and radiation and the prayers of your legion of family and friends. If you get a little crabby along the way, I think we can all cut you some slack about that. Don’t worry about getting to Germany. Let me know when you and Jill are ready to go and we will get you there on the next flight out! You are my hero in more ways than one! Love you and Jill to pieces!
John Adams says
Prayers continuing and following each step of your journey from two special groups here in Birmingham! The gift you are is mighty and provides strength to many others fighting medical issues – similar and very different from your own. Love and care for you and Jill and your family in the days ahead! SHALOM
Fred C Fussell says
Mike, our very best thoughts and highest hopes are with you. We are on your side.
Thanks so much for being such a tough and intelligent patient, and for informing your friends as you move through this. Your strength strengthens us all, every one of us. Best to Jill.
Fred
Lisa Kelly says
Wow, Germany….. shows how small the world actually is… Great you have those resources to fall back on.
Will keep on praying, praying, praying.
Betsy Covington says
I love reading all the other folks’ comments, ’cause it reminds me what a loyal and fierce army you have surrounding you & Jill. It’s incredible — and a credit to your perseverance — that you’ve assembled such an A+++ medical team so quickly. This next part may not be fun, but I have faith that you will prevail. Wear your t-shirt & remember how much we all love you.
Cindi Ludwig says
Mike,
I just read this to Bob and we both have a host of thoughts and feelings. Please know we admire your preserverence, your ridiculously positive attitude, your faith, and your willingness to write about what you’re going through. We love you and with hundreds of others we hold you close in prayer.
Cindy Godwin says
Never stop fighting! You and Jill are in my daily prayers. As we said in southern Germany,
“Gruss Gott”!
Karen Spears Zacharias says
Mike: I sit in quiet reverence alongside you and Jill.
Richard Nurnberg says
Mike and Jill,
I hate that you have this fight on your hands, but I admire your fighting spirit and Amy and I know that you will prevail, Invictus!
Mint Flowers says
Oh Mike, prayers have been sent endlessly as you continue this fight. You are so real and amazing. We will all help you and Jill get to Germany, just say the word. Lots of love.
Tripp Wade says
Mike, you have a plan now. Have faith in your doctors and God. Your friends and family will be with you on this journey. You can do this.
If ever in need of someone to help you keep the faith we are here and ready to help! Cancer sucks and there no two ways around it. Fight it and win !!!
You are a winner my friend.
John Tongret says
Mike,
I often wonder about the value of my prayers. Regardless, I continue in the hope my prayers somehow fit into God’s plan. That said, I will continue with my prayers for you and Jill. Let me know if I can help in any way. Keep the faith and perseverance.
Ruth Martin says
Stay strong and steady Mike. Your Savior Jesus Christ has your back…..literally.
Tom Butler says
Mike, Marilyn and I send our love and encouragement as you grapple with the demon and search for a cure. From the comments above, your circle of friends and supporters feel the same. Our best thoughts to Jill as well.
Patsy Dean says
Mike, keep your strong will to fight this horrible disease! You and Jill have the faith and the fight to beat this. Our prayers are with you and I believe it goes without saying that if the time comes for you to go to Germany or anywhere else you need to go, all of Columbus will work together to get y’all there! We love you guys.
Steve and Patsy
Pat Daniel says
It is good to know where you are in this process, so our prayers can follow you. Steve and I have both of you in those prayers every day.
Cherry Kersey says
I am a member of God’s army. And I march into battle with prayers for you Mike. May you be overcome with his peace and remain in that state until this battle is won.
Tom and Liz Kendrickt says
Mike, you’ve already “been there done that”
And you know the durn stuff worlks. Go for it and let us know if you need soup delivered, or any
Thing that may suite your palate.
When will you begin?
Susan Cheney says
We are all so honored to be part of this battle in what ever way you need us. Prayers, fund raising, love…what ever is needed.
Robert B. Simpson says
Mike, you set a terrific example for all of us when we have to fight our own battles, especially when they are battles we’ve fought before and had hoped we’d won for good. I am awed by your strength and determination. My most earnest prayers are offered for you.
Geri M. Davis says
I sit in silent prayer….silence doesn’t mean there is nothing to say…it only means I can’t find the words that need to be said….I know that you and HE can do this.
Charles Tigner says
I love you bro.
Callie says
Keep a positive attitude, by all means, but hell’s bells, Mike, if a multi-met cancer survivor with tin foil for a tongue and a galloping intestinal tract can’t get cranky, then who can?!? Kathryn, the sales team and I can keep CVM and VP on track, so you and Jill just go wherever whenever you need to go to knock this tumor out. And you know Beth … just tell her how many ads she has to sell for you to get to Germany and you can go ahead and reserve your flight!!! I love you two more than you know and I am sending you every ounce of strength, health, love and comfort I can possibly muster. Fight on! Fight on, my dear, sweet and ornery friend!!
Kim Farmer says
Wow, another fight….another win. You and Jill are in my prayers. There are 1000’s of prayer warriors at my church and I have added you to that prayer list. If anyone can beat this, I have faith you will be a winner. Daily love and prayers your way.
Bobby & Mary Dixon says
Mike, you are in our prayers and thoughts always. God bless you!