Let’s break it all down…down…..down (think echo, here). I’m speaking to you right now from the bottom of a single, deep, oddly-misshapen taste bud from one side or the other of my tongue. The soft, shiny tissue looks innocent enough from this close proximity, but we all know there’s lightening waitin’ to be unleashed if that fat old man takes a shine to dressing somebody down.
During a short nap, I had this snippet of a dream. I have this similar dream when I get into a rare dream state and I’m not feeling well. I am always a minimized version of myself, left to look up at a Texas-sized lanscape. Cancer makes me feel small, especially that I’m having such a difficult time doing any damn thing. My joints, by God, hurt! I know I’m a tough guy, but living through 40 months in some sort of daily measurable physical pain really does wear on a body.
The odd dreams in naps notwithstanding, my whole body is a mess right now. I can’t taste anything specific. I, in fact, can taste everything and everything tastes like everything else. Sweet. There is no savory for me at the present. Salt is sweet. Chocolate is even sweeter, but in a weird off-putting way. For a guy who can taste the razor-thin nuances between different types of grassy flavors in a sauvignon blanc, being sentenced to a one-taste-fits-all universally bland sweet flavor profile is pretty much awful.
As you know, I haven’t posted in a while, and I’m sorry about that. I have been nauseated almost constantly since I started on the 800mg dose of Votrient, a powerful tyrosine kinase inhibitor (oral chemotherapy) drug I have been taking since Tuesday, November 13.
I went to see my primary medical oncologist, Dr. Andrew Pippas, on Thursday, November 29 for a follow up visit to see how I was taking to the new medication. Andy reached over and unwrapped a tongue depressor and looked back in my direction. “I don’t think that’s a very good idea,” I said. “If you’re having a burning sensation in your mouth, I need to see what is going on,” he said.
“Then you had better give me a barf bag,” I said. I palmed the barf bag and he went in. I felt like Mr. Ed for a short while. Dr. P was on the fringes. “Well, your teeth look great,” he said as he rolled my tongue around, dangerously near my very shallow vomit trigger.
Then he went deep, and so did I. After about ten minutes of hurling, we were able to resume our conversation. He looked at me with compassion, even though he was easily the cause of my having to add yet another tick mark to my ridiculously short vomit streak. A good vomit streak (or the lack of vomiting for a time, technically) is hard to come by when cancer is in your life.
At the end of that appointment, Dr. Pippas cut my daily 800mg dosage of Votrient in half, with the intention of ramping me back up to the full dosage over some period of time if my body will adjust. In addition to the all-encompassing nausea, fatigue was a major side effect at the full dosage. I slept a lot, long nights and naps during the day and still awakened feeling like I could just curl back up and sleep some more. People say to listen to your body. Mine was telling me to sleep. So that is what I did.
So, with Dr. Pippas telling me to skip the entire dose on the 29th and to begin on November 30 with a 400mg dose, I am now six days into the reduced dosage. Yes, I feel more like myself. Yes, I’m able to hold food down. Yes, my tongue feels more like a tongue than a studded, metal hacky sack.
But, it is still a daily struggle, mainly with my not feeling like doing much. Sadly, one of the the things that I just not felt like doing is writing. I know that I have a huge, loyal following of this blog and those people want to know what is going on with me. I have commiserated with others who are on some kind of medical journey and who also blog about the struggle between just getting some information out and being able to write something you feel good about people reading. Something you’d be proud of, so to speak. Too many times I’ve had to just sit down and take that journalistic dose of castor oil and bang something out when I had much rather be entranced with some piece of good music and have my heart flow through my fingers as they dance across my MacBook Pro’s keyboard. Lately there has been too much “castor oil” gagging and not enough flowing.
Maybe this downward dosing (which I just confirmed on the phone with Dr. Pippas’ office will be in place until at least Dec. 27, when we return to see him) will allow me to extend my vomit streak through the Christmas holiday. Then we’ll look toward the new year (my 60th) with an idea of how to proceed.
With the ramping down of nausea, I’m hoping for a ramping up of blog activity. If that turns out to be, then there’ll be more to follow. In the meantime, I hope you had a great Thanksgiving and are thick into the planning for your Christmas holiday. Merry Christmas, Mr. Herlihy!
See you soon!
Debbie & David Harrell says
Thanks for posting. Stay strong and remember what you are shooting for at the end. Hope you can have some sweet dreams. Gotta love Dr Pippas.
Doug Sumrell says
I admire you so much my friend. Your inner strength is amazing
You have a Merry Christmas!
Doug
Gloria Dodds says
On those days when you had rather be doing something besides writing, DO IT! We’ll still be here waiting to hear what is going on when you WANT to write something worthy of your talent. In the meantime, just listen to your body and comply with its wishes. Enjoy your family during this great Christmas season.
ron says
Hang tough, baby! I kept looking for the studs on the hacky sack…
Love you, man
Gracie Allmond says
Mike,
God is using you through your sickness to inspire others. I hope your strength, appetite, passion for writing and life increases this week and throughout the month.
I’ll be lifting you up in my daily prayers.
Gracie
Patti Trotter says
Thanks for letting us know how you are doing, Mike. I have been wondering. I think about you everyday and pray for you, Jill, Michael, Adam, Ann and John….Eric, too. You are such an inspiration to so many. I wish I could do something to make it easier.
Wanda Farish says
All I can say is that I am praying for you. My Christmas wish for you is God’s speed in healing.
Eddie and Nancy Reid says
You are a wonderful person, Mike, God doesn’t make many like you,when He gives you victory over this physically and mentally draining time you are going through, you will be a stronger and more wonderful person than you are now. We will all give Him thanks and praise for his blessings on you. We love you.
Prayers always,
Eddie and Nancy
Kate Nerone says
I have felt sorry & sad for so many of your physical ordeals these past few yrs., Mike. They have been myriad & challenging & often downright gruesome. I applaud your willingness to be brutally honest about them, even at the risk of making your readers cringe. Never spare us the details. There is something about witnessing your truth-telling that binds us to you & to each other. Even when you are silent, I guarantee you, all of us feel you in our lives. I hope you can feel us right back. And if I may be as forthright as you have been, I got a different kind of pissed off when I read about this drug screwing w/your sense of taste. I felt a Shakespearean rant rise in me “Is there to be NO justice for this man? That he may be denied the comfort of his WINE?” Damn, I pray at least chocolate comes back for the holidays. xoxo Kate
Doug says
Hello, Mike. I am starting Votrient tomorrow (400 mg) in hopes of denying any renal cell carcinoma metastasis from finding lodging in my brain. I’ve had a craniectomy and four stereotactic radiosurgeries to remove five brain mets so far. The hope is that any future met will be discouraged, especially any that happens to land on a spot that can’t be surgically removed or zapped out. How have you dealt with fatigue? Frequent naps? I am at liberty to take them, but would rather do something more constructive with my limited time on earth. And even more concerning, what have you taken for nausea? I had Zofran at the time of my nephrectomy and went into a kind of shock–trembling, strong anxiety, not a pleasant experience. And as for eating, does everything taste “normal” or more like a tin can (to say nothing of more revolting objects.) When I was on Sutent, my sense of taste went quickly and my pancreas went into overdrive. I eventually had to stop it, with something like an allergic reaction to it. All of the above is just me thinking out loud. More important, most important, is that you are able to write so powerfully, giving inspiration to those of us who are on the same journey…. Thank you so much, Mike. With sincere best wishes, Doug in Plattsburgh, NY
Sally Whitt says
Mike,
I hate it that the side effects have been so bad. I pass by your childhood home on airport thruway every day and always lift you up in
prayer when I see your house. I pray that this new dose will do the trick and then you can ramp up to the 800mg dose. Keep running the race with your eye on the prize! Merry Christmas to you and your family!
Bebe Bahnsen says
Well, hell, Mike. I wrote you a light note a few minutes ago and now find this post saying you’re having another rough time. I am so sorry.
I hope Dr. Pippas will forgive us for laughing at his plight when you were in his office, but you are very funny, even when very sick! We need your wit and humor. We need you!
Bebe Bahnsen says
Who is Mr. Herlihy?
Patty Branch says
Mike I am sorry that you have been so nauseated and fatigued. I can truly say That is the worst! You can not function at all! I know that! I hope the reduction of your meds helps you have a wonderful Christmas!!!! You and Jill are always in my thoughts and prayers! Much love to you both! You are so strong! Keep fighting!
Carol Ann says
I never really know what to say. I’m sure you don’t need to hear that my heart aches for you. But
it does.
I hope with every purging, you are closer to ridding your body of this evil cancer.
You are a great man. My prayers go up daily for you and Jill.
Betsy Lawrence says
Feeling for you and hoping you will get better soon! Love to you and Jill!
Laurel and Fred says
Thank you for writing, Mike. When you are silent, we are so concerned… and don’t know how to pray for you two. We sure do love you both!
Jim Irvin says
Glad you’re not having to “hug the john” so much anymore. Merry Chrismas to you and all of your family.
Margie Ivey says
So sorry and I hope it all improves and you have a wonderful Christmas. Thanks for keeping us posted.