I’m waiting for a cardiac consultation before we can leave the intensive care unit to go home. I’m fine after the microwave ablation and my medical team here at Midtown Medical Center did a great job in spite of what turned out to be very dangerous circumstances during the procedure. I will write about this at length in a few days. For now, and since I’m typing on my iPhone, I wanted to thank everyone for prayers and concerns. May God bless you all for all those prayers.
In the spirit of complete transparency, I need to mention something at the top of this post: I am working on a new digital magazine publication for the Georgia Fraternal Order of Police. For the past several weeks I have been immersed in all kinds of things about law enforcement officers — LEOs. I have spent a great deal of time talking with members of the Georgia FOP who wear badges from either police, sheriff, marshall, campus police, military police, customs, corrections, CIA, FBI, ATF or homeland security.
Some of the stories we are targeting for future publications seem so much more important right now as our country has been watching the turmoil in Ferguson, MO and how that turmoil is spreading out from there to larger cities with large blocks of people who aren’t white Americans. There has been a great deal of discussion of the use of military gear and BDU-type uniforms, and whether or not to use vest cams to protect both the alleged perpetrator and the LEO involved in a dust up.
That has nothing more to do with this post than to give you a look into my mind over these past few weeks that culminated with the thing that happened out in our parking lot on Friday afternoon. I am really upset about it. I’m upset because I did something that my head told me to do, but my heart was tugging me in the other direction. Here I sit on Sunday afternoon looking back on my weekend and I’m sad that I might have missed an opportunity, and instead I might have perpetuated another stereotypical profiling episode that just didn’t have to happen.
I got a call on my cell phone late in the day on Friday and was notified about a group of young black men in our parking lot. The caller said they looked like they were just hanging around and might be up to no good. I grabbed my sunglasses and walked out our office front door and around the building so I could check them out. I made a pass by them on the way to do something I dreamed up so I could get a good look at them and try to determine whether or not I should approach them and inquire about what they were doing there.
A couple of them were shirtless and they were kind of lounging up against a car that I didn’t recognize and the other one was sitting on a parking bumper watching me. My heart told me that they were probably waiting on someone who was doing business with one of our tenants. My head told me to engage them and see if I could detect some kind of threat. As the property owner of that corner of our block, I have a responsibility to keep the place safe, well maintained and well lit.
So, this white boy, against the alarms ringing in my head that were telling me these kids were just waiting on their mother, who was probably inside paying off a short term cash loan from one of my tenants and the reason they weren’t in the damn car is because it was hot as the hubs of hell out there on that asphalt. But no, I didn’t process that and walk on.
“Hey guys, you waiting on someone?” I said.
“Nuhuh,” mumbled the disgusted looking one with the reddish tips on his hair. “Someone in there?” I gestured at the loan company building. He mumbled something else that I couldn’t understand and I swear to God I could hear what he was thinking: “Listen you white asshole. My mother is inside paying a bill. Me and my boys are just too hot to sit in that car so we’re waiting here in your damn parking lot in the shade. You got a problem with that!!?!”
I am so sorry that I didn’t do what my heart wanted me to do: I should have gone over and sat down next to that angry looking young man and talked to him about what has been on my heart since this latest racial flash fire has boiled up in our country’s streets. I wish I could go back and ask him if he’d be willing to talk to me about my fears about about the anger that is boiling up around us and about his righteous indignation at feeling like he’s always got to explain himself.
I cannot imagine what it must feel like to be a young African American male and to see the look of mistrust or downright fear in people’s eyes as they are looking at you. If I looked up in my rearview mirror and saw blue lights and heard the click, click, click of boots walking up toward my car window, I would probably injure myself getting into whatever position the LEO told me to get into. Whether or not I was doing something wrong, my first thought would be, “Okay, I know how this is supposed to work. If I do what they say to do, everyone will be safe and if I’m guilty, I’ll have to pay for what I did. If I’m innocent, they system will take care of determining my innocence and I’ll go on back to my life.
That young black man that sees that same splatter of blue lights is bringing a whole different set of thoughts as he decides what he wants to do. I can’t put my head there, because I’m a white man who has never been subjected to any type of racial profiling. I’ve never had to explain to anyone why I was walking, sitting, standing, driving or doing a single damn thing. I can’t imagine how that must feel.
I know one thing, black men need to help rear their children. I have so many African American friends who are just like me except for the color of their skin. They are married to great women, they are terrific fathers to their children. Their children are educated, law-abiding citizens who are contributing to all the good things going on in our country.
Are these young black men who d0n’t have a father at home, imprinting on people at school or out in the streets who are not good, law-abiding citizens? Is this where that thuggish behavior comes from?
It should be obvious by now as you read this rambling column, that I have absolutely nothing I can contribute to this ugly situation. I am, however, going to look for every opportunity to engage with people and try to talk about these perceptions we have about people simply because of the color of their skin. There should never be a reason why someone should fear or feel anger toward someone they don’t even know.
To those young men in my parking lot on Friday, I am so sorry that I didn’t treat you like a human. I am so sorry that I didn’t offer you a bottle of water and a place to sit where it is cool while you waited for whomever you were waiting on. I am just so sorry I didn’t lead with my heart.
Now, let’s look at the other side of this. Let’s say you are a hairdresser and the newest thing in video games is a game where the people holding the controllers are racking up points bludgeoning you with tire tools or shooting you right in the middle of your well-coiffed forehead. And, they get extra points if your recently blown-off skull lands in that dumpster in the alley.
When an LEO comes upon a law being broken, his or her main job is to control the situation. Get people on the ground, while watching others standing around and might be involved with the perpetrator. They’ve got to watch for weapons, call for backup, watch the crowd, protect themselves and the innocents around them. That job is almost impossible, even if everyone is completely doing what they’re told to do.
Now, what if that perp decides he’s innocent and isn’t about to do what that cop just told him to do? Chaos happens. We see this now almost around the clock on TV. LEOs have one of the most difficult jobs on earth and that job is getting tougher by the day.
May God continue to bless the people whose job it is to keep us safe and protect the rule of law. May God also bless those whose tough upbringing hasn’t given them the proper tools to live safely in this world. I don’t have any answers here. All I have to offer is a hopeful prayer that we can figure this out.
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.
Thanks for using this blog to stay connected with us. Please share it.