Columbus and the Valley

Happy to Report Some Good News

I don’t know quite where to start. So, let’s do the uncharacteristic thing and just get right to the point and maybe that will spare those of you who’re not interested in my usual stories, incessant details and dramatic setups. After all, life is short and sometimes it just makes sense to eat the dessert first — especially if you’re suddenly able to taste it!

This past Thursday afternoon, Jill and I met with Dr. Andy Pippas at the John B. Amos Cancer Center here in Columbus, Ga. The previous week, I had submitted to yet another painless blood draw at the hands of the one of the fabulous phlebotomists in the lab there at JBACC. I was hydrated, also during that week, and had CT scans (with contrast) of my chest, abdomen and pelvis. Just two weeks before that, I met with Dr. Raj Alappan, my nephrologist. The point is that I had fresh labs, scans and updated reporting from the person who is helping us watch over Strainer, my only remaining kidney. All of my systems have been checked and the news we got on Thursday was current and as accurate as modern medicine can make it.

Dr. Pippas gave us the news that we’ve been hoping to hear after living through 15 months of raging hell. “Mike, at this moment you are cancer free.”

He said it, despite the fact you’ll not hear me say it. I prefer NED, no evidence of disease. Not sure why, other than NED seems less provocative. A little more humble as I stand in front of the open curtain staring up at the feet of the “All Powerful Cancer,” complete with flashing lights and smoke. I’m sure as hell not the Cowardly Lion. Despite my fears, I have not been any kind of a coward through this thing. But I’m a little superstitious and just not a fan of appearing too cocky in the presence of something that has the power to kill me or strike me down.

All that said, I appear to have been hugely and wonderfully responsive to Votrient, the powerful tyrosine kinase inhibitor drug I have been taking for the past 15 months. My adrenal tumor is gone. The apparent tumors in my right kidney are gone. The tumors in my spine are gone. I have no tumors in my lungs or in my brain (the places kidney cancer cells love to invade).

Looks like the loss of a hundred pounds, the loss of the cuticles around my fingernails, the loss of ALL the pigmentation in my body hair, the chronic daily diarrhea, the almost daily vomiting, the maddening itching of my skin, the inability to taste food, the ever-present brain fog and some peripheral neuropathy in my feet were all worth enduring to get the news we got from Dr. Pippas on Thursday. We are thrilled at this wonderful news and  extremely grateful to our medical team, our prayer warriors, our friends, our church family, our family and all the legions of people who are concerned about us and who have found so many ways to let us know that they care. This is epic good news!

I asked Dr. Pippas, “What do we do now?” “The good news is you’ve got a couple of options,” he said.  (This may get a little tedious, but this blog is about what it is like to LIVE with cancer, so I’m going to take some time to let you into my thought process. You’re welcome to read as much as you can stand.) Here are my options: Since I am now almost at a month off Votrient, we can go back on a “maintenance” dose of 200mg daily to try to extend the reprieve from actively growing cancer. That isn’t a great option, because as I tapered off the drug back in January, I was actually as sick on the 200mg dose as I had been on the full 800mg dosage. Why would I want to do that? Well, I don’t.

The next option is that I can stay off the Votrient and be extra vigilant with CT scans every three months for up to a year and reevaluate again at the end of the year. This is a better option, because the prevailing wisdom (although this wisdom is only anecdotal, as there isn’t any real data to support it) is that for people like me who are excellent responders to the medication, there is every reason to believe we’ll respond just as strongly when and if the medicine is restarted. Andy strongly cautioned me about a couple of things if we choose this option. Although my taste buds have blissfully re-awakened, I have to keep my weight down. My daily routine needs to embrace a spartan diet, mostly vegetarian, with an occasional splurge to keep from going crazy. He wants me to keep my weight at or near where it is today. He also wants me to add back as much exercise as I can stand. Bike riding is a definite. I also need to be lifting some light weights and walking. I’ll need to get myself motivated to get this done. Plus, I’m still really weak from the pounding my body has taken over the past 15 months.

Dr. Pippas is in communication with our medical oncologist at Duke, Dr. Dan George, who is familiar with my case. I’m also making contact with Dr. Hans Hammers (through a friend) at Johns Hopkins in Baltimore who is a world-class kidney cancer specialist. When we get those pieces of feedback, we’ll sit down with Dr. Pippas and make up our minds about what we want to do. My guess is that we’ll likely choose the second option and stay off the Votrient and remain hyper-vigilant going forward and hope and pray the cancer will leave me the hell alone.

I feel like a new man right now. I feel my strength coming back. Next time you see me, take a look at my eyebrows. My hair is beginning the process of growing back in with color. If I get to stay off the drug, the pigment will come back into my hair and it will grow back in some darker shade. Maybe it will be straighter, or curlier. We don’t really know what to expect. I’m just happy to begin to see some hope that my daily prayers of being able to get old with my Jill, see our sons find love and hold a grandchild or ten are looking better. Thanks be to God!

Thanks to all of you who are following our progress. If you know of anyone who is struggling with cancer, especially with a kidney cancer diagnosis, please forward a link to this blog to them. Those of us who are living with cancer need to see that the news doesn’t always have to be bad. Although, it damn sure feels like it sometime.

Nausea Relief Comes From Shocking Place

nometex-device-202x300I wanted to step back and talk about a shocking new discovery to help me with this chemotherapy-induced nausea that I was introduced to by Dr. Andy Pippas. It is literally a “shocking” find and it is providing me with some real relief at a time when I have needed it the most. After 15 months on Votrient, the nausea, vomiting and my inability to eat has robbed me of energy and left me with a feeling of hopelessness and malaise. On edge. Out of sorts and just irritable. Ask Jill, she’ll tell you.

Dr. Pippas has seen what nausea looks like on the face of a patient. In fact, ALL the patients in his care who are receiving some kind of chemotherapy are probably dealing with some level of nausea if not every day, then certainly around the days when they have some kind of chemotherapeutic infusion. These drugs are very potent and they use their ability to disrupt some kind of pathway to try to keep the cancer cells confused about what good cancer cells do — kill their host.

So, Andy looked at me in his office a fews days ago and said, “You need Nometex.” And he used his thumb and index finger on his wrist like he was adjusting a watch band as he said it. I remember thinking, “Surely he isn’t talking about one of those magnetic bracelets. He better hope that is not the case! I will make giving him hell my next job if that is what he is suggesting.” I love Andy Pippas, but if he needs his chops busted, I’m just the guy to do it. Old age and cancer definitely diminish the effectiveness of a robust, verbal governor. Thankfully, Andy wasn’t trying to slip some kind of snake oil band onto my wrist. He was, in fact, talking about what has turned out to provide me shocking relief from my nausea.

I listened to Dr. Pippas explain the Nometex medical device. He explained that it is a drug-free, non-invasive prescription therapy with no drug interaction complications. The device is designed to be recommended to patients whose nausea and vomiting have NOT been controlled with standard anti-emetic regimens. I knew that my Zofran, Phenergan, Marinol therapies were missing the mark because a person who isn’t nauseated, doesn’t sleep with a vomit bucket on the floor beside the bed. And more often than not, the first hint that I’m sick happens as I first wake up, sometimes in the middle of the night out of dead sleep. The smell of food cooking makes me sick. The thought of eating meat makes me sick. The other things that make me sick are a mystery until they happen. It is almost like air, sometimes, makes me sick. Go figure!

We were told that the device requires a doctor’s prescription and that they weren’t sure how our insurance would treat it and that it would cost, before insurance, between $150 and $180 to get it. I started doing a mental calculation of recent co-pays, colored by my realization that we’ve just come through a lovely holiday that required that we spend some money on gifts for our friends and family, so I really wasn’t interested in forking over that much money for something I wasn’t sure would work.

I’m a writer, for goodness sake, I thought. I’ll just get in touch with the Nometex folks and see if I can get one of them to try out. Then I can give it a good trial and write about my experiences with this new anti-nausea therapy. So that is what I did. Out of complete transparency, I want to disclose that I have received a complimentary sample of the device and have been trying it out for several days during the worst of the nausea I’ve experienced since the cancer diagnosis.

Let me tell you how this thing works: First, let me tell you that it DOES work for me. If I feel nausea coming on, I fish the bracelet out of my pocket, put a drop of gel on the inside of my right wrist and strap the bracelet on in just the right spot, so that the median nerve responds to the light shock it receives every four seconds. The shock goes right up through the palm of my hand and out between my “bird” finger and my ring finger. I guess that must be why they call it the median nerve. It is right in the middle of your hand.

What is supposed to happen inside your body is that the median nerve triggers the “vomit center” of the brain via the vagus nerve. This gentle pulsing stimulation seems to work to disrupt that nausea reflex when I wear the bracelet and have it turned on. And, the best part, is that it works in less than five minutes. It quickly makes the nausea go away!

I will ask Dr. Pippas for a prescription for the Nometex device next time I’m in his office. Now that I know it works for me, I won’t want to be without one in my pocket should the need arise. The other thing I found out during my research of the Nometex device is that patients who have pacemakers should take care to make sure they follow directions for the proper use of the device.

 

Have to Stop Taking Votrient

“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.

 

Mr. Herlihy

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!