I’ve been wrasslin’ with myself for the past few weeks about this blog. If you are a regular reader of my blog, you know that the number of posts I make is inversely proportional to my general state of health. If I am sick and scared, I write. So, in these darker times of my life, my writing is selfish. I write because I need to write. To cope. To push away that creeping fear that is crawling up the various parts of my body that have been left numb and tingly from surgery, drugs and radiation.
When I’m feeling well, I get back to my life and my writing is harder to come by. And, I’m busy at work. We’re launching a new digital magazine this fall that is for and about Georgia’s Fraternal Order of Police members. Building a new publication from the ground up is really exciting!
This is my conundrum: I know that a few thousand people have closely followed my journey with cancer. When I don’t write, I know people miss hearing from me. I feel like I’m being selfish again. I am sitting in an infusion chair at JBACC with a needle in my arm, hydrating and preparing for CT scans of chest, abdomen and pelvis tomorrow. Being here, surrounded by stuck figures, it is hard not to think about the disease that has made our lives so difficult for the past five years.
My “God-is-choosing-my-next-adventure” story has taken a decidedly upward turn. We are now six months out from the decision to stop taking Votrient, the drug that is helping to save my life. Continuing to take the 800mg daily dose had become impossible to deal with. The drug healed me (for now) but was making me sicker than the cancer.
My tumors are gone. I’m able to eat and have gained back 60 of the 100 pounds I lost. I was able to go whitewater rafting this past Saturday and I am able to think clearly without pain and without those heavy-handed cancer drugs. Wednesday is the day when I’ll know if we’re still NED (No Evidence of Disease).
If you’re one of those that wants to see more regular posts, please forgive me for not writing. I’m hoping that I’ll be able to write less about cancer and more about our business growing and going. That would make me very happy.
The past couple of weeks have a circle of life kind of time out here in Seale, Ala. I spent quite a bit of time during the past few days working on a speech that I delivered to my Rotary club on Wednesday, I folded down the screen on my MacBook Pro Saturday morning and stepped out into a Chamber of Commerce kind of day. Breezy, cool, dry air filtered through a canopy of trees in fresh, full leaf against an impossibly blue sky. The grass needed to be mowed and I needed some solitary time with my thoughts to ponder the difficult task of telling the story of my five year tug of war with kidney cancer in just 20 minutes in the presence of 250 or 300 of my fellow Rotarians.
Izzy, our Golden, and I walked down to the barn for me to get the mower and for her to dance circles around me, snap her teeth and crowd my legs with her body, itching to get as many square inches of her bulk against as much of my legs as is geometrically possible. She’s a low tech, high touch creature. When she’s really happy, she leaps around and loudly clicks her upper and lower jaws together. I’ve never seen a dog do that. Her lips are curled back and her teeth are bared in what, to the casual observer would appear to be a bit of aggressive dog face. That look, only for a second, interrupts her usual open, wide-eyed, grinning self.
I unlocked the door to the barn and took a right into my shop. There was a fertilizer spreader tipped against the mower and when I moved it out of the way there was a dark, still 4 and a half foot rat snake curled up in the shadow. He or she took a leisurely slide and eased its body into a small diamond-shaped hole in the metal tread of a ramp I use to roll heavy things into the bed of my pickup truck. The snake’s head was small enough to get her moving through the hole, but the mass of its body stopped moving forward when it became larger than the inner dimensions of the grate.
I gently picked up her tail and her underbelly, on my side of the grate, to see if I could pull her out. She was calm, but I could feel the rhythmic ripple of her muscles trying to propel her through the grate on the side where her head was. I laid her back on the concrete floor and as I reached up to remove my sunglasses, a rotten smell assaulted my nostrils as my hands passed. I left her, called up Izzy and we headed back to the house for me to wash my hands and to get a pair of work gloves out of the garage. I’ve been around a few snakes and I don’t remember them smelling bad. This one smelled like she had been rolling in road kill.
She could not have been happy about me pulling her backwards out of the hole, against the grain of her dark brown scales, but she let me pull her out. I could hear the scales clicking against the steel of the grate as she gave in to the sensation of being pulled. Although I’m skeeved out by snakes, I’m drawn to their elegance. Efficient, understated movement. Smooth, usually scent-free skin.
My plan was to catch her right behind her head just before she was completely free from the hole in the grate. It didn’t turn out that way, because once most of body was free, she back-peddled on her own and her head quickly joined her tail on my side of the grate. So, I had a hold of her just ahead of her midway point. She seemed to appreciate me pulling her free, tongue flicking and moving slow. We walked out of the barn and I gave Izzy the Sit/Stay command. Izzy dropped down onto her haunches and watched me walk with the snake until she lost sight of us around the corner of the barn. I left the snake at the edge of the woods fifty yards south of where I found her and headed back to the barn, where Izzy still sat waiting for me to free her from her command to stay. What an awesome dog!
This past Saturday, I spent some much-needed time on my tractor bush hogging a field. The grass needed to be cut and I needed some thinking time with the muffled thrumming of the diesel engine coming through, diminished by 15 decibels by ear protection I wear when I’m on the tractor. On a westerly pass, a huge turtle moved out of the 10″ tall bahiagrass and into a mowed strip. Thankfully, I saw her and stopped the tractor, picked her up and took her back to the woods, safely out of the mowing zone.
Last night as we drove onto our property after an evening out with the McKnights, our headlights lit up a beautiful gray fox out under the pecan trees. What a cool thing to see.
On another note, I know it has been a while since I’ve posted about my cancer journey. I was the guest speaker at the Rotary Club of Columbus last week. Our son, Nicholas Riddle, was there and used my iPhone to video Marquette McKnight’s introduction and my speech. The video has been uploaded to my YouTube account page and is in two parts.
I continue to thrive after I stopped taking Votrient, at Dr. Pippas’ recommendation. My hair is returning to the color brown. I have gained back some of the 100 pounds I lost and I’m sleeping like a baby. Hallelujah!
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.
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.
“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.
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.
Four and a half years ago, I received a dire diagnosis. Renal cell carcinoma. Kidney cancer. I opened my internet browser and found out just how dire — I had a five percent chance of being alive in five years. I saw my life pass before my eyes. My beautiful sons. My parents, my friends, my pets. Oh God, my sweet Jill. I didn’t want to leave them. How would I ever start the process of dying? When someone tells you that death has come knocking, you just never know how you’ll react. Much like, I’m sure, that warrior’s realization that the only thing between them and an angry enemy is the grit and determination they can conjure as they plan their attack. I’ll admit, I didn’t know what the hell to do. So, I did the only thing I knew how to do. I wrote — a lot. Prior to this post, the words I’ve written and those that have been written back to me fill up over 400 8.5″ by 11″ single-spaced pages! I was, and continue to be, scared to death.
At my first visit with local hematologist/medical oncologist, Dr. Andrew Pippas at the John B. Amos Cancer Center, he cautioned me to be aware that the internet would likely deliver an outdated view of my prognosis. He assured me that there were new drugs coming online and he looked right into my eyes and said, “You’re not going to die any time soon.”
Since that office visit well over four years ago, Dr. Pippas and I have had many ups and downs. We have argued. I have even refused at least one treatment course he wanted me to begin. Our relationship has been one of give and take. Despite any differences we’ve had, what Dr. Pippas has never wavered from, is his position as the most solid, wonderful leader of my medical team. We’ve sought opinions from the best RCC doctors on the planet in New York City, at Duke University Hospital in North Carolina and at cancer mecca, M. D. Anderson Cancer Center in Houston, Tex. I have also relied on the testimony from a cadre of RCC patients, some of whom are still alive and others who have, despite the best efforts of the best doctors in the country, have gone on to their greater rewards and have left pain and suffering as well as their loving friends and families behind.
Those of you who are regular readers of this blog know that if I am posting, I am likely in a frightened state. That I have not posted much lately is a sign of good things in our lives. Yes, I’ve lost 90 pounds. That is good. Good for Strainer, my remaining kidney. Good for my body’s processes. Great for my creatinine level. Great for my blood pressure. Great for Chancellor’s Mens Store, because not a single item of clothing I own, including shoes, underwear, pants and shirts fit me. Only my socks and hats fit me. I have managed to cobble together a manageable skinny wardrobe that I am not embarrassed to be seen in out on the street, gratefully discovering that really expensive “stretchy” jeans are now a luxury that I will never be without.
So, the good news is that this cancer, for the moment, is not trying to kill me. Sadly though, the Votrient that I’m taking 800 mgs. a day of, is whipping my ass. Votrient has taken the pigment from my hair. All of it. Votrient has given me chronic, daily diarrhea. Votrient makes me throw up. Out of the blue and without much warning. In addition to the original site of this cancer in my left kidney and in at least one lymph node near that kidney, I have endured metastases in my spine at L2. Two back surgeries, two rounds of stereotactic radiosurgery (radiation) have beaten those metastases back.
Last year, doctors discovered other mets in my left adrenal gland and possibly in my right kidney. The Votrient was begun, according to superstar surgeon, Dr. Christopher Wood at M. D. Anderson, to “see if it will make these tumors smaller in advance of another surgery to remove the adrenal gland.” That was a year ago. Despite making me skinny, washed out and pale and always in a gastrointestinal turmoil, I found out yesterday that Votrient is working for me. When I say “working,” I mean working like a son of a bitch! After reading my scans yesterday, Dr. Pippas told me that my tumors are gone. I am by no means cured. But what I am is alive, still among my loved ones and fairly well able to enjoy life. I’ll take that for now.
I am still in research mode. There is a new clinical trial at Johns Hopkins in Baltimore that delivers a combination of two new drugs and it is showing mind-blowing response rates among RCC patients. The bad news is that the tumors will have to return in order for me to qualify to enter that trial. With cancer, there is always bad news sprinkled in the with little good news you hear. I’ll keep looking for that magic bullet. I’ll keep taking Votrient. I’ll keep loving my awesome family. I’ll keep hugging my pets. I’ll continue to bathe in the gentle love coming from our huge cadre of friends.
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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. 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 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.
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 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 Dr. Gupta’s article, 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.
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 doctor’s 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.
Jill says I’m obsessed with my hair. That I talk about it every day. Sometimes several times a day. It is just so interesting to me, I guess, that I’m seeing such changes in my hair over such a short period of time. And, it is not only my hair that is doing some weird stuff.
I have no cuticles on my fingernails. The cuticles have receded and sort of folded in on themselves, creating a little trough at the bottom of each of my fingernails. I tried looking in there. Nothing really going on, it appears.
Dr. Pippas put me back up to the full 800mg dosage of Votrient, starting on January 17. So, for about six weeks, I’ve been getting adjusted to the side effects. The mornings are tough. I’m most nauseated in the mornings and then in waves during the day. With my tastebuds out of commission, I’m eating much less and have enjoyed a hard-fought 30-pound weight loss. I expect to keep dropping a few pounds here and there, because I just don’t enjoy eating right now.
I want Jamie Keating to know that I’m dying to come to Epic for dinner. I know he’s been wondering why he hasn’t seen our faces in his new place. When foie gras tastes like Alcoa aluminum foil, it doesn’t make sense to eat foie gras.
I’m ready to talk about the pink elephant in the room. For over five weeks now there have been no new posts to my blog. Speaking of epic, I’m in middle of what I hope is the end of an epic writer’s block. There is so much going on in my life that I just haven’t been able to get my mind clear to write. In the midst of all this cancer stuff, I had an event in my left eye that sent me to see local retina specialist, Dr. Nicholas Mayfield, at West Georgia Eye Care Center. Thankfully the tiny leak of blood in my eye didn’t rise to the level of retinal tear. I still see floaters and my eyesight seems to have changed to the extent that my reading glasses aren’t so helpful, further impacting my comfort in using my laptop and making me less able to be in the mood to write.
But I finally have some good news to tell, so I’m powering through the blockade to tell it. The Votrient is working for me. The formerly 4cm tumor that is in my left adrenal gland is now just under 2cm! That is about a 50% reduction in the length of the tumor and equates to nearly a 75% reduction in volume. Dr. Pippas is thrilled with these results. Naturally, so are we. I guess the broken tongue, having to sleep with a vomit bucket next to the bed, white hair and diarrhea have begun to pay off.
Here’s what Dr. Pippas says. He feels like the Votrient will give me at least 18 months to two years of disease control. The Xgeva, the monthly injection that I take to keep a metastasis from setting up in my bones, and the Votrient will buy me some time while we wait for something that could give us a cure to come along. It is not the best existence, but the discomfort the drugs have brought into my life is WAY better than runaway disease. By a mile!
I am trying to reinvigorate my desire to write. Please be patient with me and continue to keep our family in your prayers.