“In an essay titled “A View From the Front Line,” Jencks described her experience with cancer as like being woken up mid-flight on a jumbo jet and then thrown out with a parachute into a foreign landscape without a map:
“There you are, the future patient, quietly progressing with other passengers toward a distant destination when, astonishingly (Why me?) a large hole opens in the floor next to you. People in white coats appear, help you into a parachute and — no time to think — out you go.
“You descend. You hit the ground…But where is the enemy? What is the enemy? What is it up to?…No road. No compass. No map. No training. Is there something you should know and don’t?
“The white coats are far, far away, strapping others into their parachutes. Occasionally they wave but, even if you ask them, they don’t know the answers. They are up there in the jumbo, involved with parachutes, not map-making.”
Siddhartha Mukherjee, The Emperor of All Maladies
I had a meeting with my favorite white coat, Dr. Andy Pippas, yesterday afternoon. After a couple of times waking up from a sound sleep with a splitting headache and the sensation that I’m seeing my blood pulsing in my field of vision and the steady, precipitous dropping of my weight — I realized I might have a problem. The results of my weigh in this morning showed I have now officially lost 100 pounds. Vomiting has become an almost daily occurrence. My cancer drug, Votrient, is whittling the list of foods I can eat down like a runaway buzz saw. The most pressing issue is that my blood pressure has decided to hop onto the front car of the roller coaster and it is click, click, clicking upward. WTF!
My white coat pointed his finger at me.
He really didn’t, but that steady, Greek (……a guess) gaze through those ultra cool glasses Dr. Pippas wears as he said, “Mike, you’ve got to stop taking Votrient immediately. You need to stop for two weeks, beginning today. Your body needs to reset. Then we’ll see.” He went on to tell me that most who take this drug get about six or seven months of a reprieve from their marching kidney cancer. I have been taking the drug for almost 15 months and my body is telling me that it needs a break.
Think: 2″ thick USDA prime ribeye steak.
I did. Almost my very first thought.
My last scans were clear. The adrenal tumor is gone. But, the ground that has been gained has been paid for with muscle tissue, nausea and fatigue.
Jill is a stunning soldier and I love her.
That was six days ago. I have discontinued taking the Votrient, despite it keeping me alive and despite the fact that the medication has shrunk my adrenal gland tumor completely! Don’t think I am doing this without some extreme concern. It isn’t easy to ignore a medication that didn’t “bring me to the dance,” but damn sure has kept me alive and healthy enough to be at the dance within earshot of the jukebox! So, yes, I am beginning to feel better. Yes, I am throwing up less and diarrhea is less of an issue than it was a little over a week ago. But, at what cost? Am I opening the door for the cancer to rekindle and mount another assault on my body? Unfortunately, I don’t know the answer to these questions and neither does anyone else. So, we’re going to mind my favorite white coat and lay off the Votrient for a total of two weeks. Then I’ll be back in Dr. Pippas’ office asking some questions about what we do next.
Meanwhile, I still can’t fathom eating that steak. I still can’t eat much of anything and according to my friends, “I’m the perfect look for that guy in a Viagra commercial.” I’m thin, I’m white haired and doggone it, I must look like I suffer from erectile dysfunction and already exploring what are risks of using a penis pump on myself.
Patti Trotter says
Mike, I don’t know what to say except that you continue to be an inspiration to me. I lift you up to God every day….for a miracle, and also lately, for your eating problems and weight loss to cease. Hang in there, friend. Love you!
Bill Plock says
I will continue to pray for you my friend! I know that, if it’s possible, your cancer wished that it hadn’t picked this battle with you. Your mindset, your determination, and Jill’s love for you will continue to keep you on a course to victory! Dr. Pippas is the most intelligent man that I have ever known, and as he has with me, he will go to any lengths necessary to help you win. God bless you Mike!
Carter Seaton says
I’m thankful the drug got you this far and that you didn’t lose your sense of humor along with the 100 pounds. Hang tuff, Mike. You’ll beat this sucker yet.
Tripp wade says
Mike,we are praying for you to get past this phase in your battle! I hope your appetite will return soon and you will once again enjoy a great steak. Thank you for posting today and sharing with your friends. I could not help but LOL at some of your comments. Stay the course my friend we are going to whip this. And oh by the away,, when you are ready for that steak I’ll buy and be more than happy to eat one with you !!!
Carol Wingard says
Hey Mike,
WTF? Indeed! The unknown keeps coming, as I guess it always will in your journey, as well as for all of us who have reached a certain age. But, your battle with cancer has been truly shitty. Hate to use profanity (sort of)–I just cannot think of a better word. I so admire your initiative, determination, and perseverance. Every time I read your posts, I am struck by your raw courage and your funny honesty. My main reason for responding today is to comment on the erectile dysfunction commercial thing. I am sure your friends meant that, with your distinguished white hair and slim figure, you resemble the good-looking guys who are in the commercials. You look sexy (sorry, Jill), and not…hmmm…incapacitated.
Carol
Kate Nerone says
You cross my mind most days, either a fleeting image or an echo of your husky laugh. A few words that have made me ponder or smile, or both. Reading this took a little chunk out of me, I must say. I hope your two weeks ends w/something you can grab onto, even if it isn’t a map. Sending love. xo
Priscilla Ivey says
Mike, I never have met you, but I have kept up with you thru Margie Ivey, who is mysister-in-law. You and I were going thru Chemo about the same time. Hearing all that you were going thru made me as scared. Dr. Pippas was my Dr. also and I k.ew that if anyone could get us thru this, it was him. I didn’t have as hard a time as you, but you were an inspiration for me. Thanks, and I hope you continue to get better by the day. Priscilla Ivey Oh, I have colon retrum cancer and going thru y my 5th year. Also had breast cancer in2008 and colon retrum in 2009.
Helena says
You are my hero!
Sherry Wade says
Praying that these two weeks will be restorative for you. Then you, Jill, and your wonderful doctor will map out the continuing plan for keeping you, not only in the dance, but also enjoying being there. You have a lot of dance partners who love you!
Mike Owen says
You and Jill are inspirations. I’d love to grill you a ribeye when you feel up to it.
Margie Ivey says
We’re hoping and praying that the meds made cancer not want anything else to do with you. Looking forward to hearing about that prime rib dinner.
Callie says
I can’t begin to imagine the fatigue that comes from wandering mapless through unfamiliar terrain for months and years on end. If it were me, there would be MUCH more whining, many breakdowns, and heaping helpings of Eeyore woe-is-me mentality. All your emotional strength and mental fortitude is impressive, especially from a guy who once had a meltdown at a restaurant over Windows products. =)
I say to friends and family all the time how amazed and thrilled I am at how well you continue to live despite your challenges. I have no map to offer you, but I can offer my certainty that your tenacity and resilience will lead you through the very long life Dr. Pippas predicted for you.
Hugs and love,
Callie
Betsy Lawrence says
We are thinking and praying for you daily! Y’all are amazing to me!
Love
Betsy
Pat Daniel says
Well, that was a surprise to hear. Don’t know why God has brought you to this particular point, but trust that he has you in the palm of his hands. We keep you in our thoughts and, always, in our daily prayers. I’m know the break from Votrient will give you a much needed rest and hope that it soothes not just your unhappy tummy, but also your soul.
sandi hortman says
Mike, you don’t know me but you have talked to my husband, Bill, a fellow parachutist. He was taken off Votrient much, much sooner than you and is doing very well with Dr. Pippas’ recommendation of Inlyta. The side effects are much milder, his hair has returned to its black color, and the first MRI showed substantial shrinkage of his liver tumors.
I’m not a medical doctor, of course, but just offer this to say that Dr. Pippas has many options up that proverbial sleeve of his and I know he will lead you to just the one designed for your situation.
So Keep the Faith, my blog friend. Bill enjoyed a huge ribeye (finally) just the other night!
Peace,
Sandi
nancy schmidt says
My husband is also suffering from kidney and lungs cancer…He took 2 yrs votrient then for 3 months inlyta. To find out if it really works we did CT control and today i called our onkologist to find out if Inlyta does work…..I can’t stop crying to hear from the doctor that Inlyta doesn’t work at all, so he will stop prescribing my husband this drug….what should i do??? i can’t stop crying all day long of worries about my husband….I do not know what to do now…Anybody knows the effect from TORISEL???
Katie says
New to votrient. Can anyone help me? 313 269 6697. Call me. Feeling all type of ways. Anybody call me
gary w sheets says
Mike, I am in the same boat as you. I found that taking a Probiotic (a friendly Bifidobacteria concentrate) helps my intestinal immune system while taking PAZOPANIB. Fewer side effects. Keep up the good fight. Gary Sheets
Myrtle Beach SC
Linda says
Hi my husband Terry has kidney cancer spread to lungs just had 2months on Pazopanib Dr has told him to stop it now to let his problems heal he has very sore feet caused by the drug very painful to walk. Anyone else had this problem and what was the outcome? His white blood cell count is low to He hopes to go back on Pazopanib