I’ve been caught up in a swirling mass of indecision. Frozen in place. Can’t write. Can’t focus. Afraid to look forward. Unwilling to look back. Hung up in the now. It took a dead man with a saxophone to shake me loose. Driving along this morning, heading into town to meet with Dr. Pippas to find out his recommendation for a much-dreaded tyrosine kinase inhibitor medication, I was listening to the Classic Rewind channel on Sirius/XM satellite radio.
Violins and piano — I cranked up the volume until it hurt. Crystal clear highs delivered by tweeters, solid chest thumps from the big woofer that stretches across the back deck of my car and those strains so familiar from Bruce Springsteen and the E Street Band’s, 1975 album, Born to Run. Gooseflesh popped up on my arms. Then Clarence Clemons and his wailing sax delivered the iconic Jungleland solo and it all broke loose. Like a boot off my neck.
I felt my shoulders drop and the tension drain out of my face.
“The poets down here don’t write nothing at all. They just stand back and let it all be.”
My mojo was coming back, compliments of Clarence Clemons, God bless his soul.
Where did I leave you last? Oh yeah, screw Lance Armstrong — blah, blah, blah. And, I was to have scans again in mid-October. There’s been some new and not so good news since my last post. My creatinine levels have deteriorated from a stable 1.8 baseline to a baseline of about 2.3. This will preclude me from having any more CT scans with contrast (unless we’re in a life or death situation and simply must have the contrast). This is going to strongly, negatively impact our ability to clearly see what is going on inside my body in the future.
There is a new radiology group at The Medical Center and I’ve had the great pleasure of meeting the doctor who will be overseeing my case. He’s got a great name. One that I’d like to steal as the name of a character in my novel, if that ever happens. Virginia gentleman, Dr. W. Granville Batte, is a flatwater kayaker and a skeet shooter. I’m looking forward to introducing him to my kayaking buddies. He read my scans and through Dr. Pippas reported that they are stable. That is good news. What we’ve been able to accomplish is to live with this cancer as a chronic disease, not a life-threatening one. It is incurable and if it decides to turn it up a notch, it will kill me. But right now, it is stable and although it presents a challenge, I am able to live with it.
After a consultation with Dr. Dan George and Dr. Andrew Pippas, we’ve decided to take the Votrient route. Pazopanib is the drug name and it was approved for use against kidney cancer in April of this year. Although it is not the most potent of the drugs I could use, it is decidedly more kidney friendly and has a more manageable side effects profile. If you click on the drug name, the information about the drug will open in a new window. Most of the side effects won’t be visible to those around me, hopefully. What will likely happen that will be noticeable is that my hair will begin, very shortly, to turn completely white. Unlike some of the other choices we could have made, this drug isn’t supposed to destroy taste buds. These drugs are very powerful tyrosine kinase inhibitors and though they won’t deliver a cure, they can certainly prolong my life.
So, once we get all the financial implications of our co-pay for Votrient settled (this drug costs north of $100,000 per year), I’ll start taking the medication in a few days to a few weeks.
I’m sorry for the long dry spell. I haven’t been able to write and I’m just glad I was in the right place at the right time this morning for The Big Man to jolt me out of my writing reverie. This blog is a tribute to musicians of every stripe. Just how much good music does in the world is underrated.
Rest in peace, Big Man…..
Carol Ann says
You and Jill are in our thoughts and prayers, always.
Cathy Williams says
It is a beautiful thing!!
Sandy says
Hi Mike, my husband Chuck has been taking Votrient since March. He was already snow white from sutent which failed us. His biggest SE wirh V has been stomach issues. Spends lots if time in the bathroom. So much so that doc has reduced dose to 600 mg. This has been a lot easier for him to tolerate and as of last scans WE HAVE SHRINKAGE! Next scans this month and we’re hoping to hear those words again. Praying for the same results for you! If you ever want to talk to him he’d LOVE to talk to someone going on this little trip with him :). Just let me know and I’ll send along our no to talk or text.
Sandy Gunnels says
Cool – now you can give Andy a run for his money for the “cool sexy dude with the white hair” title! Love that you’re back writing. Love ya & praying without ceasing!
Donna says
Mike,
Was wondering how you were..I’ve been on votrient for a year now. Dare I say all scans since have been shrinkage. I take 800mg everyday. I wake up & take them & go back to sleep to try to minimize side effects. Works for me pretty well. Stage IV ccrcc.
Good Luck,
Donna
Margie Ivey says
Glad to see you post again. I’ve looked for it everyday. Also glad there’s more options and I think white hair will look great on you.
Patty Branch says
Hey Mike! Glad you are back! Sounds like good news! Everything stable and a new drug that could shrink the tumors! Keep listening to the music and take Abigail breath! You and Jill are always in my thoughts and prayers! Love Patty
P.S you and I were in the wrong business! 100,000 for your new treatment. 35,000 a year for my new Lupus drug in addition to the huge price of meds we already take. We should have been drug execs!
Sandra & Bill Henry says
Had missed your writing and glad you’re back through the magic of music! Prayers continue for good reports with the new drug, renewed vigor, and lots of peace for you and Jill.
Marianne says
Keeping fingers crossed the Votriemt kicks some ass! Pardon my French…
Anne Schaeffer says
Hey Mike, Like those above I am glad you are writing again. You and Jill are in our thoughts and prayers here in Eufaula. Good news about the new drug! You will look good with white hair!
Willa Ogletree says
Hey Mike,
It’s wonderful to hear that something as good as music got you back to yourself. Music is the one thing we can always trust to lift us up. The one thing that we all have in common. And is great to relieve tension and stress.
You will need to post a picture of yourself, when the hair turns white. It will be wild if the treatment that I am about to start for my bladder cancer does the same. It is called BCG, originally used for people with TB.
I am so glad that there is still something that they can do for you. You just can’t keep a good man down.
Jim and I are keeping you in our prayers. Please take care and as soon as you can write us another blog. Enjoy being able to hear your voice while reading them.
Take Care My Goood Friend, God Bless You.
Love to you and your family
Candy says
Hey Mike!
So good to see you the other night. You look amazing. Keep the faith my friend. The journey is long, the road hard but worth the fight. Praying for you always.
Sue B. White says
Love you!!!
Cathy Alford says
It’s great to see you writing again. Once I see your post, it takes priority on my reading list. Can I just say I tell Spud routinely that white hair is distinguished on a man and I’m certain it will just further compliment you as a distinguished man.
Encouraging and positive thoughts to you,
Cathy
Brenda French says
What’s the latest on the Columbus drumming circle? I recommended one for the service men and women with PTSD in the Richmond area.
Patti Trotter says
I’ve been missing you, Mike. Glad to see you back. We prayed for you last night at church, and I am continually lifting you, Jill, your boys, and John and Ann up in prayer. Quite frankly, I think you will be very handsome with white hair!
Grandin says
We men all have that insane need to squirrel away in a cave every now and then and just stare at the wall! The beautiful thing is that God will only let us do that for so long before he sends an angel to prod us back into action!!! Yours was Clarence!!! Glad you are back! By the way white hair sounds cool to me!!!
Love you man and you continue to be covered in prayer!!!
Grandin
Connie Jackson says
MUSIC TRANSPORTS!
I have that cd and I always crank it up. You’re right – that is one wailing sax!!
White hair? Not quite as good as my “silver” tresses:), but I know you’ll wear it well.
Always sending you two positive energy,
Connie
Becca Wiggins says
Hang in there, Mike. Sock Monkeys United!
David Fletcher says
Mike,
Two things…one for you, one for Jill. First, you are right about Dr Batte, W. Granville Batte (read as if you are James Bond), an awesome addittion to our team as well as yours. Hell, don’t just use his cool name in your novel, use his persona. He is intelligent,caring,kind and quirky. He reminds me of a gentler you.
For Jill, I hope you enjoy sleeping with a man that will surely look like Richard Gere.
Love you both. Keep the faith!
Bob Ludwig says
Thanks for the update. Knowing you are writing your own music is a prayer answered. Like everyone else on your follow list, may you find a friendly and smooth path with this next approach. I have always thought the “whites” are still better than the “balds” for the follicly challenged.
Debby Payne says
Mike – Your words paint a picture better than any painting I’ve ever seen. Hope you continue to feel the urge to write. Always keeping you and Jill in my prayers.