nausea

Life, As I Know It, Is About To Change

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.

Nausea Relief Comes From Shocking Place

I 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.

Drug Side Effects Still Taking a Toll

On the surface it seems we have been successful in relegating my case of stage IV renal cell carcinoma (kidney cancer) into acting like a chronic disease. Something like diabetes. Something you can live with and keep at bay with medication. It doesn’t appear to be actively trying to snuff me out and thankfully it also appears that the oral chemotherapy I’m taking daily, although it is making me very nauseated and giving me constant diarrhea, has done a number on at least two tumors on my left adrenal gland. The tumors are gone!

Jill and I met with Dr. Andy Pippas yesterday morning. Except for a slightly elevated billirubin count, my lab work is exceptional. The higher than normal billirubin is a direct result of my taking the Votrient, which is an oral chemotherapy drug called a tyrosine kinase inhibitor. Our discussion with Dr. Pippas went toward the shocking weight loss I’ve experienced — now almost 100 pounds! He looked at my chart and proclaimed that I’d lost about 10 more pounds since I last saw him just 4 weeks ago. He is concerned, as are we, that I’m really starting to lose muscle mass and tone.

We talked about my nausea a lot during this visit, I guess because it has gotten worse over the past month. I am really having a difficult time eating almost everything EXCEPT Vietnamese food. I’m surviving on a dish at Uptown Vietnam Cuisine called hu thieu, which is a pork broth based soup, similar to pho (pronounced /f ?/). It fills me up. It makes it happy and it is a very healthy dish, according to Beth Bussey, my nutritionist. Other than that meal, I am finding it very difficult to eat a single other thing without feeling nauseated. For a former fat foodie, this is really quite difficult to take.

Dr. Pippas prescribed a timed-release patch containing a drug called ondansetron (trade name Zofran), and the idea was for it to provide me with a constant infusion of the drug for a solid week and keep my nausea at bay. I applied the patch yesterday afternoon and so far, I have been nauseated almost every waking moment. I’m not sure if I’m experiencing a “breaking in” period or whether there is something else going on, but I’m at the edge of a dry heave all the time. So far, today hasn’t been much fun.

Dr. Pippas also told me about another product which is a wristband that gently stimulates the median nerve in the wrist and signals the “vomit center” in the brain not to fire. Who knew the brain had a vomit center? I am doing some research on that product now and may add it to my anti-nausea regime to see if we can get me back to a better place.

So, all things considered, I am in a pretty good position right now for someone with stage IV cancer. I’m not in immediate danger of dying. I’m able to enjoy my family and friends. And, even though I have a real intimate relationship with my toilet, I can enjoy and fairly respectable amount of good time during a day. As I see it, things could be a lot worse. If this is all there is, I’m happy to have it.

The other news is that I’m feeling like I might be able to write again and I hope that will translate into my being more communicative in this blog. Time will tell. In the meantime, I hope you have a fabulous Christmas with your family and friends. If you celebrate other holidays at this time of the year, I hope yours is a great one! For all my brother and sister cancer sufferers out there, hang on, there’s a better year coming.

Nothing Like a Warm Toilet Seat

After my last Thursday meeting with Dr. Pippas, we’ve circled back around now and I’m on the full 800mg daily dose of Votrient. As I suspected, my quality of life has taken a noticeable hit. The superficial — and easiest to handle — change is that my eyebrows went stark-white within three weeks on Votrient.

My new hair is snow white as it grows in and white is winning the battle over light brown. Right now, I look like I’ve been coloring my hair, but have decided to give up and stop. There is a one-inch band of pure white hair coming out of my scalp and each successive haircut will reveal more of the white. My women (if you know me, you’re aware of the passel of sister wives it takes to run my life) say they like it. That it gives me a distinctive look. I think it makes me look like Father Time, but it is what it is.

The side effects of the medication that are anything but superficial and are very difficult to manage are the gastrointestinal issues. Nausea and diarrhea are a constant stealthy threat. Stealthy isn’t what you really want with these guys. I’d much rather see them coming so I can be prepared. But no, they just jump right up and bitch slap me at a moment’s notice. Not fun right now. Not fun.

I still can’t taste, although using plastic utensils and taking zinc have made my tastebuds more intermittent than a total loss. There are some things that I still can taste. I’m thankful for that.

Thanks to my brother, Eric, I got to ride along on my first quail hunt last Sunday down in Albany. I went with a borrowed shotgun that I had never fired and I was nervous as hell about what I was supposed to do. We got the safety talk and because of my weakened legs, I was allowed to get out of the buggy and be ready for the first covey rise.

Here’s the scenario: I have determined that my left eye is my master eye. This is probably why I haven’t ever been able to hit anything shooting a right-handed gun. So, I went with a borrowed over and under shotgun, which I shouldered on the left side. The first covey got up and I picked a bird and dropped it with my first shot. I got so excited and nervous, the next four shots were all attempted with the safety on. Let me tell you, that almost never works. You can’t shoot a bird when the gun won’t go off!

I was over-thinking all the safety concerns (if that is possible…I don’t think it is.). Worried about shooting that expensive, beautiful bird dog. Worried about pulling a Dick Cheney and shooting somebody. Worried about looking like a dumb ass in front of my brother and his friends. (I’m pretty sure I blew that one, though, with the four consecutive attempts to fire the gun with the safety on.) I got tired really fast and decided that I’d go out while I was ahead and take my place back in the bird buggy. I think I hit every bird I shot at. One. Technically, the safety-on misfires were called strikes, so I can’t claim I batted a thousand. Let’s just put it this way: I got a quail. I got to experience what a luxury, high-end quail hunts looks and feels like. I got to spend some good time with my brother and some of his best friends. And, If I had had a trunk full of Japanese toilet seats, I could have made some money that day.

I have been wanting to tell this story for months, but have been worried about how it would be taken by the male readers of this blog. So, Sunday, I tried out this story on a dozen or so of the manliest guys I know. They’re all rugged outdoorsmen. They like to cuss, drink, lie about women, shoot guns and grill large chunks of meat. I’m thinking this is the perfect crowd to test drive the Japanese toilet seat story. So I let it fly.

Some background first: I have given my sons some serious advice about how to keep a relationship fresh. There are a couple of bodily functions that should NEVER be shared with your mate. If it is possible to have your toilet in a separate room with a door, than that is what you should always shoot for. Anything that you’d do or any sound that you’d make while sitting on a toilet should be kept there behind that door. As long as you keep this to yourself, your relationship will always have a sense of mystery and have a better chance of being kept fresh for the long haul. This has been my philosophy and my sons will attest to the fact that I’ve counseled them in this regard.

So, let’s move on to the days after my back-to-back back surgeries. I had the excruciatingly embarrassing need for hospital techs to clean me in the bathroom on several occasions while I was still in the hospital recuperating from major back surgery. I couldn’t bend and reach like before the surgery. All I could think about was that someone was going to have to do this for me after I got home. By the time I got home, thankfully, I was able to take care of myself, but the horror that one day I might not be able to just stayed on my mind.

I started investigating Japanese toilets several years ago. They were unbelievably expensive when they first hit my radar. A couple of thousand dollars was the going rate and they were generally a modified, electronic entire toilet. Now, they have been engineered to be an electronic toilet seat that will simply replace the seat on most types of toilets in use today.

Okay, we’re back to Sunday in south Georgia. On a quail buggy with a dozen cussing men. I described in very vivid detail about my Coco toilet seat, what it does, how it does it and how it makes my life more comfortable and more easy and private. I swear if I had had a dozen of them, I would have sold out that day. I don’t know when I’ve been more uncomfortable at the start of a story to have it go so well. The Sunday story at the quail hunt was my warm up for this blog post.

I ordered the Coco 9500R a few months ago and despite my rather unhandiness, I was able to completely install it by myself, including retrofitting the electric wall plug to a GFCI (ground-fault circuit interrupter) plug. It took only about a half-hour to do the wiring and replace the seat on our Toto elongated toilet. I can easily say that this incredible piece of electronic equipment has changed my life. Now, I’m prepared for whatever life throws at me and I can be confident that I’ll be able to maintain my dignity in the bathroom and the mystery in my marriage.

I wasn’t able to find anyone who sells these locally, but if someone steps up and confirms that they sell this seat locally, I’ll give them a special advertising deal in Columbus and the Valley magazine so they can let people know about it.

Please accept my apologies about these blog posts being sparse. This medication has, among other things, rendered me unable to write, at least write to my satisfaction. I’m hoping it’ll begin to turn me loose as my body adjusts to the dosage. I miss writing and from the encouragement I get when I see my great readers, many of you are missing these posts, too.