Columbus and the Valley

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.

 

“Why I Changed My Mind About Weed”

I’m in a weird place. I have lost almost 75 pounds since mid-November, 2012. On average, almost two pounds per week for every single one of the weeks that have passed since I took my first dose of Votrient, an oral chemotherapy. Jill and I are going to a wedding on Saturday and until yesterday, when I picked up a new suit from Chancellor’s Men’s Wear, I didn’t have a single suit, sport coat or tuxedo that I could wear. I’ll admit that when I was younger, I was a major clothes horse. I was reminded of that yesterday when Roger Stinson handed me my new suit pants and sent me into the tiny freezer — which is the infamous Chancellor’s changing room — and I emerged and had him slip on the new suit coat. The feel of a new suit of clothes that REALLY fits is a thrilling thing! I have worn fat clothes for so many years that the complete and utter thrill I got seeing myself in that incredible suit made me want to dance. Roger turned me down though.

This rampant weight loss is hammered home all during the day, as I witness people looking me right in the eyes and knowing that they don’t recognize me. Today at the Chamber Lunch and Learn, our office mates went to support Helena Coates of Media, Marketing and More! as she was today’s presenter. I haven’t been to any Chamber events lately, so I saw a good number of people there that I haven’t seen in months and months. Kat Cannella was one of the folks who I spoke to who didn’t have a clue who I was. She came over at the end of Helena’s presentation and we talked about my shocking weight loss and the loss of my hair color. I look very different, and Lord knows, I sure feel different.

The act of eating, finding things I can eat, the timing of meals and the difficulty of keeping food down are consuming larger amounts of attention in every one of my days. For instance, the very nice luncheon that was prepared for the Chamber event didn’t include a single item that I could eat. So, I sat with my peeps while they ate and after I dropped them back at the office, I visited Freeze Frame on Broadway and ate a nice cup of my favorite swirled orange/vanilla frozen yogurt with toasted almonds. It filled me up and made me smile all at the same time. Some days I just can’t eat. The very thought of putting something in my mouth makes me want to heave. For someone who has spent hours in a kitchen preparing the perfect meal for guests, running a competitive barbecue cooking team, organizing wine tastings and being something of a self-proclaimed talking head on food/wine pairings, the fact that I am having such a difficult time getting nourishment and stanching a precipitous slide in my body weight is just a shocking thing.

My doctors are concerned, my wife is concerned, my mother is concerned and I’ll admit, lately I’m really starting to get worried about where this might be going. Cachexia is the official medical term for this wasting away of one’s body/muscle mass. My skin has become very thin, my muscles are atrophying and the worry about whether or not I can eat is causing stress that I didn’t anticipate. Although becoming empty will almost always make me sick, sometimes the indecision over what or whether I can eat keeps me from doing what I know I have to do and just put something in my stomach.

I’ve reported in this blog that Dr. Andy Pippas prescribed Marinol, which is a man-made version of the active drug that is in cannabis, tetrahydrocannabinol. My prescription contained 30 pills with instructions to take up to two per day. I’m about three weeks into the prescription and although I have suffered from some level of food trauma every day, I have only taken about half of the number of pills prescribed for the 30-day period. I’m not sure why I would be given 30 twice-per-day pills and be expected to have them last for 30 days, other than maybe this was a test firing to see if the pills work for me when testing for drugs. The Marinol does work to some degree, although the appetite stimulation part of the expected drug action seems less than adequate. It does seem to help with the nausea, but it hasn’t done much to make me want to eat.

The Marinol doesn’t work as well as the real thing. Back when I started taking the Votrient, someone brought me a marijuana laced chewable. It was a four-dose chunk of chocolate that tasted like a Tootsie Roll. I was warned that if I hadn’t partaken of any pot recently (and, I hadn’t) that I should be cautious and maybe treat it like an eight-dose item. What I realized right away is that my nausea dissipated in about 15 minutes and that I was definitely more inclined to eat. So, not only did I want to eat, but I was more likely to keep what I ate down. If some combination of Marinol and the occasional dose of self-prescribed medical marijuana or  can stop this weight loss and allow me to develop enough strength to begin some kind of exercise, then I might have a chance to actually be able to become fairly healthy again in spite of living with a deadly, incurable stage IV cancer. The info on www.sacredkratom.com/ about this is clear, the hard chemicals we use as medicine are often more damaging than they should be.

It is the side effects of the chemo — diarrhea, vomiting, weakness, numbness in extremities, dizzyness and lack of strength that make some people give up. “I just can’t deal with this anymore!” Finding something that will restore as much of a normal life as possible in combination with a great wife, incredible children, an awesome family, good church friends, kind co-workers and a good network that give cancer patients the continued ability and will to fight the disease that is trying to kill them.

Today I read an article written by CNN Chief Medical Correspondent Dr. Sanjay Gupta. The piece, “Why I Changed My Mind About Weed,” was interesting. There is apparently way more data than was originally thought to back up the notion that not only is marijuana, aside from its recreational activities, is not highly addictive, but it is also quite helpful for many medical issues without most of the side effects that come with powerful narcotics and other classes of drugs. According to the cannavapos twitter, citizens in some 20 states and the District of Columbia have ratified some form of legislation that makes marijuana available for medical applications. It is time for this to happen on a much broader scale. Cancer patients who avail themselves of a tried and true, natural form of relief from their misery should not have to feel like criminals! If this discussion makes you uncomfortable, I’m sorry. This will not be the last you hear from me about this.

Tumors Continue to Shrink

The last time I posted was March 8, 2013. I’m sorry for that. That is one thing about cancer that no one can prepare you for — you are never really ever right in the head again. I know, “How can you tell?” I know many of you are asking that question right now. Because of my transparency (at least until March 8) my open-book life has left open for all to see that I am, on a good day, not that right.

He ain’t right.

I love that we live in a place where you can say that about someone (or yourself) and people know what you’re talking about. A hell of a lot of water has gone under our family’s collective bridge since March 8. We lost two dear members of our family animal pack. Our Golden Retriever, Dixie, was killed by a logging truck and I buried her badly ruined body. I cried a gallon of tears standing there with a bag of lime and a shovel. By myself, because I wanted no one else to have to see the carnage that was once a beloved member of our family. That same week, Azrael (Azzy), who lived on our farm for at least 15 years up and left. She likely want off to die. Cats will do that. They want to spare the ones they love the trauma of their departure.

If you’ve noticed a tender spot in our latest issue of Columbus and the Valley on our stance on rescuing animals, you’d be right. We have recently rescued a beautiful five-year-old Golden Retriever we named Izzy and a big orange male cat named Garth. These new guys have joined our other inside cat, Zoey, and our only remaining outside cat, Furry Football, and the pack is back whole again. I lost the battle of having indoor cats. I thought (I just thought) I didn’t want them living inside. Jill was of the other opinion. She won that battle, but oh, so did I! The delicious goodness of being able to hug a sweet cat and to have them purr and look at you just like you were the one who hung the moon is therapeutic beyond any possible measure. Physical pain can absolutely melt away and emotional pain is soothed as if real medicine just kicked in. There is real healing in the eyes of a pet. In case you didn’t know that, you know it now.

That animal has chosen you to be its human. They are all in. They’re job is to be your best cheerleader. They’re unfailingly in your corner. Well, at least the dog is that way. I’ve really confirmed over the past few months that we actually work for the cats. They used to rule the world and they’ve never forgotten it. But believe me, if you don’t want your heart invaded, if you don’t really want to fall completely in love with a purring pair of eyes (and the occasional claw) don’t give a cat an inch! They are incredible animals, easy to keep, and impossible not to love, if you get to know them. For those of you who either don’t like or don’t know cats, you’re not living to your full potential. I hope one day you’ll come around and know what the rest of us fully-evolved people know.

One more thing about rescue animals. During this sad time of loss and subsequent discovery, Jill and I had the opportunity to visit on several occasions our Columbus Animal Care and Control Center. Wow, is all I can say! The people there are dedicated, kind and attentive. The animals are well fed, well cared for, clean and loved. I can’t say enough good things about our experience in adopting Izzy. Please use them if you’re thinking about getting an animal. But be warned, sit on your hands for at least one trip out there on Milgen Road. There are some sweet faces out there and they’re all saying, “please take me home!”

Now, for what you came here for, here is my belated health update. My last post (March 8) I reported that the daily 800mg Votrient dose was working. The almost 4cm tumor on my left adrenal gland had shrunk by about 50%. And two small tumors in Strainer (my remaining right kidney) were less noticeable. During our visit with Dr. Andy Pippas at the John B. Amos Cancer Center, he let us know that my scans of last week showed continued, significant shrinkage of the lesions. The adrenal nodule is only about 5-10% of its original size and the two small spots on Strainer are almost entirely gone! So, the white hair, vomiting, lack of appetite, sensitivity to the sun, itchy skin and chronic diarrhea now seem to be a small price to pay for stabilizing this cancer, giving me more life to share with my family and friends and more time to make my mark on a place that I love.

I have lost a frightening amount of weight. About 70 pounds, representing over 26% of my body weight, has come off due to the lack of appetite and my inability to keep food down. I’m meeting with Beth Bussey, a wonderful nutritionist at the JBACC, and we’re plotting to find foods I can eat that I can properly digest. The big thing is my appetite. I would slap the smile off Jim Morpeth’s face for a Country’s barbecue sandwich! But, I wouldn’t be able to eat it without an almost immediate refund. Recently, we stopped by the new Meritage on First Avenue in UpTown for lunch. Chef Ashley Simmons Parsi-Graciani goes to great lengths to whip me up a vegetarian delight that hits my sweet spot (whatever that happens to be in that given moment). More often than not, when I finally sit down to eat, the nausea sets in and I just can’t bear the thought of putting something in my mouth. It is really frustrating, and the dramatic slide of my weight is becoming a concern to my caregivers.

It is a shame that marijuana is an illegal substance. I left my marijuana doctor office today with a prescription for Marinol (http://www.marinol.com/). This is a synthetic rendering of THC, the active ingredient in marijuana. It should banish nausea and also stimulate my appetite. We’ll see. It is shameful that there is a naturally growing herb that could bring relief to people who are suffering with cancer, aids, glaucoma and other serious chronic conditions, and that we can’t legally acquire it. Boy, I never thought I’d be putting myself out there to be an advocate for legalizing marijuana. But I’m there, folks. It just makes me angry that this good medicine is out there, but I can’t have it. I’m not expecting to see much public feedback on this one, but I’m curious about what people think about my comments here on this volatile subject.

I’m going to weigh in here on another volatile subject. At least, some of the local media and the nutbags — the regular 20 or so posters — who have tried and convicted MY DOCTOR, Dr. Andy Pippas for a alleged boatload of billing infractions. I know the media has a job to do. I do that same job every day. But, I really don’t like the tone that so many people have taken against a man who has lengthened lives and provided healing to thousands. I had him look me in the eye today and tell me exactly what I needed to hear to expend whatever personal energy I can to be a loud, proud member of Team Pippas. I am walking around today because of his great care and the care of the members of his John B. Amos Cancer Center team. I’ll be happy to talk to anyone about my experiences under his care. But if you want to engage me and just run him down, I’ll cut you off at the knees.

I hope to be able to keep a steady writing pace. There is much good going on in our lives and it makes me happy to be able to share it. I’ve said a lot in this post. There’s more where that came from.