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Andrew Pippas at the John B. Amos Cancer Center, he cautioned me to be aware that the internet would likely deliver an outdated view of my prognosis.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.
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.
I’m so hungry. Like a desperate man roaming in the desert, I’m conjuring perfectly plated dishes of my favorite foods in hallucinatory flashes. Last night I stormed the kitchen. With pure love in my heart, I built a handcrafted fra diavolo sauce. Crushed garlic, San Marzano tomatoes, Vidalia onion, extra virgin olive oil, salt, pepper, red pepper flakes and the tiniest pinch of sugar, simmered just so. Al dente spaghetti noodles bathed in the sauce welcomed my fork, and as I twisted up a steaming bite I recalled the thousand or so other times I’ve had this dish and hoped this one would be no different.
Thankfully, I had only given myself a small portion. My memory will have to do, as the flavor I had expected — in fact, longed for — was cast aside by the shredded, slightly sweet aluminum foil taste that lurks at my every bite. Our Golden Retriever smiled at me. Her taste buds seem just right. In our meeting on Thursday with Dr. Pippas, when we were talking about my experience with Votrient, we discussed the departure of my sense of taste. He chuckled as he said, with my complete understanding and concurrence, that it wouldn’t be all bad if I were to lose 30 or 40 pounds. I get that. Not eating when you can’t taste is turning out to be easier than not eating when your taste is spot on. I’m a half-full glass kind of guy.
Our meeting with Dr. P was good. My labs looks good, especially the creatinine number. It has finally dropped back to very near the baseline that I had prior to the Duke HD-IL2 adventure. Still locked out of HD-IL2 as a treatment option, the door could be open again for CT scans with contrast if I’m in a life-threatening situation and we really need the sharper scan. He has kicked my Votrient dose up a notch to 600mg per day. When my next shipment of the meds arrive, I’ll go to three 200mg pills per day. As my body adjusts to the medication, I’m hopeful that side effects will remain tolerable.
The other news is that I spent parts of Wednesday, Thursday and Friday at West Georgia Eye Care Center. Christmas night I starting seeing flashes in my eyes and developed floaters in my left eye. Two trips to see an ophthalmologist there and then the third day to see retina specialist, Dr. Nicholas Mayfield, to thankfully rule out a retinal tear. I’ve had some bleeding in my eye, but unless something else drastic happens, the floaters should subside (or my brain will adjust so that they aren’t as annoying) and I should be fine. I had a good experience at WGECC and I feel like I received excellent care.
I hope you all had a great Christmas (or whatever else you celebrate at this time of the year) and that 2013 will be a good year for all of us. I could use a good year. What about you?
This song from The Shins’ album, “Port of Morrow” just has my number right now. It is speaking to me ’cause I’m just a bit messed up right now. I really wish there was a way to post music on this blog. All my research says there isn’t a way to do it. But, do yourself a favor and go listen to this record. Every cut is great, but this one really speaks to me.
“It’s Only Life”
Dyed in the wool, you’ve been cornered by a natural desire.
You want to hop along with the giddy throng through life.
But how will you learn to steer when you’re grinding all your gears?
You’ve been talking for hours. You say, “Time will wash every tower to the sea.”
And now you’ve got this worry in your heart.
Well I guess it’s only life, it’s only natural.
We all spend a little while going down the rabbit hole.
The things they taught you, they’re lining up to haunt you.
You got your back against the wall. I call you on the telephone, won’t you pick up the receiver?
I’ve been down the very road you’re walking now.
It doesn’t have to be so dark and lonesome.
It takes a while but we can figure this thing out And turn it back around.
You used to be such a lion.
Before you got into all this crying on my lap.
Back when you thought I’d never get this far.
But did you really think I’d shut an open door?
The future’s calling and Imma answer her.
The wheels in motion, I never drank your potion.
And I know it breaks your heart.
Open up your parachute, something’s gotta stop the free fall.
I’ve been down the very road you’re walking now.
It doesn’t have to be so dark and lonesome.
It takes a while but we can figure this thing out
And turn it back around.
Let me catch you up. We’re getting ready for Christmas, just like everyone else. I descended into yet another quiet blog period. This cancer has stolen from me and I’m upset about it. Christmas isn’t even close to my favorite holiday. Take that, throw in my epic case of writer’s block and sprinkle on a large effing dose of destroyed taste buds and somewhere in the bottom of that misery soup is where you will find my attitude. I don’t like that I’m at this place during the Christmas holiday, but being able to be around our family has been so good.
I had a nice dinner with Nick last night at Chef Lee’s. My hope that I’d be able to taste some bold Asian flavor didn’t pan out. I didn’t let my frustration with my broken taste keep me from having a great, easy conversation with my son. We sat and talked about his new iPhone 5, cats, cars, his mother, his friends, my friends….etc. I love all our boys, but I particularly like it when I can get them one-on-one for a quiet chat like we had last night.
I’ve pretty much given up on Facebook, except for a few sporadic posts and photos. If you’re one of my 2,500 or so friends, you’ve seen pictures of the latest addition to our family, Zoey. I’ve been a bit a bastard about there being any inside animals in our family. I successfully defended that position while the boys lived at home, but Jill made her mind up that she wanted a new kitten and when Zoey moved in, I gave up. Who could not love this little baby’s face?
Zoey has delivered a good measure of good medicine to me during a time when I have most needed it. There is something magical about a purring kitten, especially when they look right into your eyes like she does into mine, that can bring real healing to a broken body or a broken spirit. She has been that healer for Jill and Jill must have known that I needed her, too. Despite the fact that she is wrecking our house and has created chaos that would piss off the pope, I have fully bought Jill’s story that Zoey will settle down and become the cat that we’ve always dreamed of. The jury is still way out on this one, but I’m hopeful that will happen because I swear I love this little Tasmanian devil.
I have been showered with every kind of sock monkey that you can imagine! Friends have sent, delivered or mailed sock monkeys of every size, color and style. In addition to the monkeys, I’ve got sock monkey shoes and a sock monkey hat. We love them. They’re in my office and on our Christmas tree. The represent to me the love of our friends and my hope for more healthy days.
I hope your holidays are everything you need them to be. Give and receive love like this will be your last Christmas.
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!
After taking yesterday’s 800 mg dose of Votrient, I’m exactly half-way through the first month. After the early scare of high blood pressure headaches, another blood pressure control medication was added and I seem to have leveled off to reasonable numbers. No headaches and not checks in the mirror to make sure the top of my head is still connected. Among the list of potential side effects, I continued to struggle with a few. None is, alone, a deal killer, but hurled around inside a mosh pit with them all pulling at you at the same time has me out of sorts for a great portion of every day.
Fifteen days in on Votrient, here are my issues in order of their importance:
• low-grade diarrhea
• nausea (I stayed on ready in church on Sunday. I never can tell when I’ll need to jump up and head for the bushes)
• Loss of appetite (No so much that I don’t want to eat, but that everything is beginning to taste the same. So I eat less.
This is bound to be good for my fat ass.)
• Back pain has returned. Not the epic, crippling back pain that I experienced after the two back surgeries I had in the
late summer/fall of 2010, but something less severe and less defined. So ill-defined that I can’t distinguish
between a cramp or a pain episode. I’m getting some bodacious cramps in my back, my legs, my feet and in my
abdomen. Those kind of cramps that set you on a gyrating attempt to find that one place that makes them stop. I
look pretty stupid, but generally I can bump and grind my way to relief. (I think there used to be more of that
going on down on Victory Drive.)
• My hair, which is already generously sprinkled with salt and pepper, is becoming a little less accommodating, which
means it is likely beginning the highly-predicted slide to “mostly salt.”
I’m struggling a bit with my overall sense of well-being. The back pain makes it difficult to start to move from a lying or sitting position. I’ve started to look like an old man who has to hop around a bit to get his universal joint in gear after standing up from a sitting or lying position. I don’t particularly like this, but it is has become my new reality.
With my 800mg dose today, I’m five days into my first month of oral tyrosine kinase inhibitor, Votrient. Thursday afternoon, I was driving down the road near the John B. Amos Cancer Center and because I just didn’t feel right, I whipped in to see if I could get someone to check my blood pressure.
Nurse Tammy delivered this reading to Dr. Pippas and he wanted to see me. Hypertension is a common side effect of Votrient. But with one kidney, I can’t really afford to allow my blood pressure to rise unchecked. Dr. Pippas called my nephrologist, Dr. Raj Alappan, and they decided to prescribe 5 mg of Norvasc to try to control my blood pressure.
I absolutely hate to have to add another daily drug, but I’ve got to try to remain in control of my body’s systems and not allow any of them to tilt out of control. The risk of having a chronic disease like kidney cancer is to keep things as balanced as possible and to try to maintain a healthy immune system. If one major system tips, then the whole thing can spiral out of control and I’d be in trouble.
The other interesting thing Dr. Pippas said to me on Thursday is that Votrient would likely cause some changes in my fingernails. That has begun to happen. The nail beds look a bit different than normal and there is a slightly red rainbow-shaped stripe on each of my nails just above the nail bed. Some of them also have a little indentation right above that red stripe.
I’ve experienced the most highly-predicted side effect of these drugs. Diarrhea (I never know how to spell this word. I always have to look it up.). Thursday and Friday, I had excruciating headaches, probably due to the elevated blood pressure. My headaches have subsided, but yesterday and today I’ve had some nausea to deal with.
All this sounds uncomfortable, and it is, but all-in-all I think if we can control my blood pressure, I should be able to get through this. I just feel pretty lousy all the time.
I’m going to be soon and I’m planning on tomorrow being a better day. I’m going to shoot photos at Columbus Regional Medical Foundation’s Gingerbread Jubilee tomorrow at the RiverMill Event Centre. If you’ve never been to that event, you wouldn’t believe the amount of pandemonium that can ensue when you’re in the presence of several hundred children who are hopped up on sugar.
The kids will be having an absolute blast. So will the photographer. It is the parents who will look like they’ve been whipped. Such a fun event!