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I Want a Little Bit of Everything

I finally figured out to easily embed media files into my blog posts. I like the way this is looking, as you can either skip the file altogether, listen to it while you read the post or come back to it later. This song is by a new folk rock/indie rock band named Dawes. The song is called “A Little Bit of Everything.” I really like it. Sort of Jackson Browne. Sort of Wallflowers. At least those great performers come to mind when I hear this new music. If you want to listen now, you know what to do.

When you are first diagnosed with cancer, shock is the first order of business. When they start sticking you with needles and you begin to see the bills roll, the “awe” starts to kick in. As you becomes a seasoned warrior, you start to get angry about just how much time, money, opportunity, energy and actual tissue you have lost to this damn disease. In my last post, I reported that an adrenal ablation treatment, although hugely successful, shit-canned another of my organs. Killed it. Rendered it useless. Cooked it with microwaves. Between the adrenal gland, an entire disc in my spine, my left kidney, 12 lymph nodes and my thyroid, I’m running with a few less organs than the good Lord saw fit to give me at birth.

So here I am, almost exactly 5 and a half years into life with renal cell carcinoma, when the Internet said I’d have only a five percent chance to be here, I find myself in a situation where I want just a little bit more of everything, and this song resonates with me.

Here are the lyrics to the song:

“A Little Bit Of Everything”

With his back against the San Francisco traffic
On the bridges side that faces towards the jail
Setting out to join a demographic
He hoists his first leg up over the railAnd a phone call is made, police cars show up quickly
The sergeant slams his passenger door
He says, “Hey son why don’t you talk through this with me?
Just tell me what you’re doing it for””Oh, it’s a little bit of everything
It’s the mountains, it’s the fog
It’s the news at six o’clock
It’s the death of my first dog””It’s the angels up above me
It’s the song that they don’t sing
It’s a little bit of everything”

An older man stands in a buffet line
He is smiling and holding out his plate
And the further he looks back into his timeline
That hard road always had led him to today

And making up for when his bright future had left him
Making up for the fact that his only son is gone
And letting everything out once, his server asks him
“Have you figured out yet, what it is you want?”

I want a little bit of everything
The biscuits and the beans
Whatever helps me to forget about
The things that brought me to my knees

So pile on those mashed potatoes
And an extra chicken wing
I’m having a little bit of everything

Somewhere a pretty girl is writing invitations
To a wedding she has scheduled for the fall
Her man says, “Baby, can I make an observation?
You don’t seem to be having any fun at all”

She said, “You just worry about
Your groomsmen and your shirt-size
And rest assured that this is making me feel good”
I think that love is so much easier than you realize
If you can give yourself to someone, then you should

‘Cause it’s a little bit of everything
The way you choke, the way you ache
It is waking up before you
So I can watch you as you wake

So in the day in late September
It’s not some stupid little ring
I’m giving a little bit of everything

Oh, it’s a little bit of everything
It’s the matador and the bull
It’s the suggested daily dosage
It is the red moon when it’s full

All these psychics and these doctors
They’re all right and they’re all wrong
It’s like trying to make out every word
When they should simply hum along

It’s not some message written in the dark
Or some truth that no one’s seen
It’s a little bit of everything

****************************************

As we prepare for our eldest son’s wedding a little later this month. I realized that Michael is giving Janice “A Little Bit of Everything.” Marriage is way more than the ring.

The joining of their two lives has made me look back on my life and my vows to Jill. Living with cancer has made me want so much more — time, experience, travel, dinners, breakfasts, quick glances when someone in the room says something we both find funny or poignant, grandchildren, walks on the beach, pillow talk, time with our children, time with our parents, time with our friends, time with our pets, the smell of our pine forest, garden dirt, cold drinks in July, the occasional snow ball fight, a-n-y-t-h-i-n-g that gives me more face time with the people I love. That is what I want. And, we’re fighting like crazy to make it happen.


New Appreciation for the Microwave

Please accept my apology for leaving you all hanging. The pressures of helping to run a business, keeping up with all of the landscaping I’m responsible for (especially with diminished physical capability) and the sheer joy of returning to life have had me blocked beyond belief. Under normal circumstances, my brain lights up when I touch the keys on my MacBook Pro. Much like me, my “S” key is beginning to show some wear. Am I living my life too safely? Command-S is the keyboard command to save. Caution has been at the very front of my consciousness AC. After Cancer.

FullSizeRender

In the last post I described the adrenal microwave ablation procedure performed by Dr. Nishant DeQuadros and his team and anesthesiologist, Dr. Mark Pinosky. In order to assure us that no heart muscle damage or other cardiac damage had occurred with the 300/200 blood pressure spike during the procedure, Dr. DeQuadros ordered a full cardiac workup. Echocardiogram, treadmill test and lab reports later, the good news is that I suffered no damage from the spike in blood pressure.

So, all that was left was a follow up scan called an arterial phase CT scan with contrast. I had that scan done last Thursday, October 2 and was happy to have been able to have an immediate consultation with Dr. DeQuadros after the scan.

During that meeting he told us that he was looking for a short list of things (margin around tumor and adrenal gland, margin around pancreas and color (degree of dark shading) of fat layer around the site of the ablation) that would indicate how successful the procedure had been. He scored a trifecta with excellent skills, a great team and an anesthesiologist who reached for and got his hands on exactly the right mix of medications and mad skills to keep me from either cardiac arrest or stroke while the procedure was being completed under very scary and trying circumstances.

The tumor appears to be dead. The adrenal gland has been banished to a growing ash heap of my internal organs. Pitched into the black ether of my insides. A perfect gut shot, suitable for TV replay on The Medical Channel (if there is such a thing). My joints ache. I don’t move as well as I used to. My hair appears to be holding on, but irrevocably grey. Parts of my feet are numb. I get completely freaked out sometimes by a phantom pain, worrying that something is knocking on my cancer door again.

In spite of all this stuff, I could be arguably NED again, for more times now than I can remember. If I could live with all of these and maybe even a few more encumbrances for another 30 years, I’d take it and run! Chances are, we haven’t seen the last of this ugly disease. I’m ready for the son of a bitch, if it decides to come at me again.

Meanwhile, I will get to witness the marriage of our eldest son on October 25, wish my father a happy birthday on October 23 and get tuned up for my favorite holiday when we host another Thanksgiving Day dinner. With just a few modifications, life could really be good for us next year.


Microwave Ablation Completed Despite Blood Pressure Spike

Heartbeat ECG. Volumetric concept. VectorI have two new best friends as of this past Thursday. Dr. Nishant deQuadros and Dr. Mark Pinosky.

Nishant is an interventional radiologist. He’s young, engaging, handsome, articulate and well trained. Here’s where he was trained:

Henry Ford Hospital/Wayne State University
Residency, Radiology, 2006–2011

Brown University
Fellowship, Vascular and Interventional Radiology, 2011–2012

Case Western Reserve University School of Medicine
Class of 2006

Mark is an anesthesiologist. I took an instant liking to him as he talked. He seemed focused and knowledgeable and because he is chief of the anesthesia group at Columbus Regional Health and is responsible for several offices in other states. He spent quite a bit of time with me before the procedure I had on Thursday morning, explaining what types of things they’re preparing for in a microwave ablation of a renal cell tumor in my left adrenal gland. He is board certified and licensed in several states. Here’s where he was trained:

Medical University of South Carolina
Class of 1989

Internship and Residency
Georgetown University Hospital

Thank God in heaven that my world intersected with these great doctors at just the right time. If not for them by my side on my case Thursday morning things would be very different in my world today. If I had a world at all.

Let me take you back through our decisions that led us to deciding to undergo microwave ablation to remove the renal cell metastasis in my left adrenal gland this past Thursday: My CT scan from July 22 showed that a tumor in my left adrenal gland had started growing again 23 months after I started a drug, Votrient, that kept the tumor at bay. I took the terrible drug for 15 months and stopped it in January of this year, after it became apparent that the drug might kill me. It robbed me of my dark hair, 100 pounds of my flesh, my taste buds, my favorable vomit streak and visited upon me some other even more awful things that I’ll spare you from reading.

Dr. Pippas said at the meeting after the scan that he felt a surgical option might be the route we should take. I visited with Dr. Andy Roddenberry at St. Francis Hospital and he gave us a good understanding of how serious this surgery would be: Open incision of 10″, 6 days in the hospital and a full six weeks of recovery. A lot of pain and a real solid blow to my already compromised immune system.

A few days later, after a lot of thought, Andy Pippas called me on the phone and said he had a change of heart about the direction he had advised me to take. He felt that a big surgery shouldn’t be done at this point. It was better to find a less invasive procedure that could take out the tumor, not negatively affect my immune system and still leave us with surgery as a next step if we needed it later.

About that same time, Dr. Granville Batte called me and told me about Dr. deQuadros and his skills as an interventional radiologist. All my research told me that this young doctor had the chops to do this procedure. That he was highly skilled and he was the right person to choose to do the procedure. We went to see him and Jill and I both felt like I was in good hands with him. So we scheduled the procedure for Thursday, August 28 at Midtown Medical Center.

I had never met Mark Pinosky until Thursday morning, when he appeared at my bedside to discuss my case prior to surgery. I’m thankful he was there and all his excellent training was brought to bear to save my life when my adrenal gland sent my blood pressure into the stratosphere right in the middle of the ablation procedure.

The CT-guided microwave ablation takes place in a CT suite, not in a surgical suite. I was placed face down in the CT machine and Dr. deQuadros used the CT to guide a needle-like probe into the tumor. In a discussion on Friday morning in his follow up visit after the procedure, he told me that he needed a four-minute burn to kill the tumor. He said he inserted the probe into the adrenal gland and started the burn.

My adrenal gland did what it does and ramped up my blood pressure and the procedure had to be stopped multiple times while efforts were underway to drive my blood pressure down. Dr. deQuadros ran a central line into a vessel behind my knee that gave them beat by beat access to my heart.

They were able to deal with blood pressures that went as high as 300/200, the corresponding bottoms that would have followed with the introduction of powerful drugs to drive my blood pressure down, and still get the procedure completed. Both of these great doctors have promised me some time to talk about the procedure for inclusion in this blog. I want to be sure to capture my thoughts and the thoughts of the doctors about this promising minimally-invasive way to deal with RCC mets in the adrenal gland.

I’m writing this from memory and from audio recordings of my talk with doctors after the procedure, so I’ll likely revisit this after I have a clearer view of how the procedure unfolded. But, regardless of my description, the medical talent with me in that room on Thursday was brought to bear on a difficult situation to what will likely be a good outcome. So thankful to my God, my medical team, my family and my prayer warriors.

Needless to say, I’ll be in my pew this morning at St. Matthews in-the-Pines Episcopal Church. I have much to be thankful for. Please excuse this rambling post. I wanted to get something out and I don’t think I’ve been as articulate as I try to be in this space. Just wanted everyone to know that I’m OK and hopeful about what lies ahead.

 


Going Home

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.


Missed Opportunity

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.


Eight Months

metal and wood figureThese past eight months have been like heaven on earth. Eight months without vomiting. Eight months without diarrhea. Eight months of razor-sharp taste buds. Eight months of date nights with Jill. Eight months of normalcy. Eight months of cancer on the back burner. Eight months without taking a medication that costs $10,000 per month. Eight months of sunshine without being afraid of burning my skin. Eight months of the occasional taste of beer. Or wine. Or bourbon. Eight months of being able to tell people I’m doing well and eight months to thank them for their continued love and concern. Eight months of being able to work, think and contribute to our publishing company.

July 23 was the day we had a follow up appointment with Dr. Pippas to get the results of the CT scan we had the day before. What had looked like another good, stable scan took a screaming left turn when Dr. P’s eyes took in the slice that showed my left adrenal gland. We both saw the lump at the same time.

Three years ago, a discovery like this would have set me on my ear.  But, these last three years have turned me into a tough sonofabitch. Yeah, I got a lump in my throat about the same size as that tumor. Yes, I could feel the dampness in the pits of my arms. Even before I knew what needed to happen next, I knew that when cancer’s in the house, ain’t nothing good comin’ from it.

Then Dr. Pippas did what he does best. He pushed back in his chair and we talked. With a waiting room full of patients, we talked. With treatment rooms full of patients, we talked. He gave Jill and me as much time as we needed to get our heads around the fact that some drugging, some cutting, some irradiating or some other, yet unknown medical torture, was about to visited onto our family in general and onto me specifically. He gave us time to see this new challenge from every angle while we were still in the room with him and able to ask questions of the leader of our medical dream team.

Dr. Pippas said he thought surgery was my best option. “Local disease requires a local treatment. Systemic disease requires systemic treatment,” Andy would always say. So we planned to scan again in five weeks time to see if the tumor was moving fast or hanging back, growing slowly like my disease has pretty much always done. We left his office feeling like a surgery to take out the adrenal gland would be a piece of cake. Probably a robotic, laparoscopic kind of thing that I would get over quickly and get behind me.

I made a decision to consult with Dr. Andy Roddenberry at St. Francis Hospital. He is a young surgeon. Full of promise and not full of himself, which made me instantly like him. I wasn’t real thrilled with what he told me, though. Dr. Roddenberry is a skilled surgeon and after a good bit of discussion, he concluded that if we wanted him to perform the surgery, he would begin the procedure hoping for a minimally invasive operation, but we needed to know the surgery would likely not be able to be completed that way.

There is considerable scar tissue left over from the massive nephrectomy that cost me my left kidney, twelve lymph nodes and a lot of digging around looking for cancer. Additionally, the organs in my body have recognized that there is some stuff missing now that used to be there and they’ve wiggled around and taken up that space in my abdomen. So, scarring, colon, pancreas and a mass of arteries and veins are all congregated in that area, as well as a vascular renal cell tumor that is very much like a 2cm bubble of blood inside the thinnest tissue paper you can imagine. The surgery has been described to me like a person trying to pick up a balloon full of blood with razor sharp pins. One prick of that bubble and I’ve got cancer cells released all over my body and my prognosis suddenly would take a big turn for the worse.

That surgery, if it turned into an open procedure, would land me five to six days in the hospital and would require about a six-week recovery. UGH! I’ve been doing research. Asking questions of people I felt might have answers. We have been fearful of a surgical option because of my weakened immune system. Andy Roddenberry explained the concerns of surgery with a weak immune system better than I have ever heard it explained.

I know this post is getting long, but I’m on a roll now and you can just close your tablet and go to bed if you’re tired of me.

Here’s what Andy Roddenberry said. “Chances are that you have small clumps of cancer cells in other places in your body. Your immune system is standing guard over them and keeping them in check. Then, you get a big 10″ incision across your belly and suddenly those immune system guard cells leave their post and race over to the site of the incision to help your body heal. The cancer cells are left alone and they have the chance to begin to grow unchecked.” That makes a hell of a lot of sense to me. Suddenly, surgery isn’t such an elegant solution to my problem.

A couple of weeks after our meeting with Andy Roddenberry, I got a call from a radiologist friend of mine who suggested that we take a look at microwave ablation as a course of action. We met with a young interventional radiologist at Midtown Medical Center named Dr. Nishant deQuadros. Much like Dr. Roddenberry, Dr. deQuadros took us through our options in a calm, thorough discussion. We left his office feeling good about him and interested in the possibility of a minimally invasive option to remove this tumor.

In the meantime, last Friday I got a phone call from Dr. Pippas. He wanted to discuss our last office visit and his comments about surgery being my best option. After a great deal of thought, he said he wanted me to look at another option than surgery. He felt surgery would be better left as a next step, after a less invasive attempt to remove the lesion.

So, we’ve listened to all of these experts and have come to a decision. We’ve made plans to go the microwave ablation route this coming Thursday, August 28. The plan is for me to spend one day in the hospital and if all goes well, I’ll be back at work on Monday, September 2. I’m nervous, not so much about the procedure, but that this disease might be about to kick it up a notch. I have enjoyed these last eight months and I want to keep living just like that — free.

So, don’t give up on me. Keep the prayers coming and pray that the microwave ablation is a success and that it kills the only remaining disease within my body.

Now, let’s go kick cancer’s ass for the seventh time!

1) nephrectomy, 2) metastasis in spine, 3) radiosurgery in spine, 4) metastasis in spine #2, 5) radiosurgery in spine #2, 6) chemotherapy, 7) microwave ablation

 


Things are Looking Up

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.


Circle of Life

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!

 

 

 

 


Happy to Report Some Good News

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.


Nausea Relief Comes From Shocking Place

nometex-device-202x300I wanted to step back and talk about a shocking new discovery to help me with this chemotherapy-induced nausea that I was introduced to by Dr. Andy Pippas. It is literally a “shocking” find and it is providing me with some real relief at a time when I have needed it the most. After 15 months on Votrient, the nausea, vomiting and my inability to eat has robbed me of energy and left me with a feeling of hopelessness and malaise. On edge. Out of sorts and just irritable. Ask Jill, she’ll tell you.

Dr. Pippas has seen what nausea looks like on the face of a patient. In fact, ALL the patients in his care who are receiving some kind of chemotherapy are probably dealing with some level of nausea if not every day, then certainly around the days when they have some kind of chemotherapeutic infusion. These drugs are very potent and they use their ability to disrupt some kind of pathway to try to keep the cancer cells confused about what good cancer cells do — kill their host.

So, Andy looked at me in his office a fews days ago and said, “You need Nometex.” And he used his thumb and index finger on his wrist like he was adjusting a watch band as he said it. I remember thinking, “Surely he isn’t talking about one of those magnetic bracelets. He better hope that is not the case! I will make giving him hell my next job if that is what he is suggesting.” I love Andy Pippas, but if he needs his chops busted, I’m just the guy to do it. Old age and cancer definitely diminish the effectiveness of a robust, verbal governor. Thankfully, Andy wasn’t trying to slip some kind of snake oil band onto my wrist. He was, in fact, talking about what has turned out to provide me shocking relief from my nausea.

I listened to Dr. Pippas explain the Nometex medical device. He explained that it is a drug-free, non-invasive prescription therapy with no drug interaction complications. The device is designed to be recommended to patients whose nausea and vomiting have NOT been controlled with standard anti-emetic regimens. I knew that my Zofran, Phenergan, Marinol therapies were missing the mark because a person who isn’t nauseated, doesn’t sleep with a vomit bucket on the floor beside the bed. And more often than not, the first hint that I’m sick happens as I first wake up, sometimes in the middle of the night out of dead sleep. The smell of food cooking makes me sick. The thought of eating meat makes me sick. The other things that make me sick are a mystery until they happen. It is almost like air, sometimes, makes me sick. Go figure!

We were told that the device requires a doctor’s prescription and that they weren’t sure how our insurance would treat it and that it would cost, before insurance, between $150 and $180 to get it. I started doing a mental calculation of recent co-pays, colored by my realization that we’ve just come through a lovely holiday that required that we spend some money on gifts for our friends and family, so I really wasn’t interested in forking over that much money for something I wasn’t sure would work.

I’m a writer, for goodness sake, I thought. I’ll just get in touch with the Nometex folks and see if I can get one of them to try out. Then I can give it a good trial and write about my experiences with this new anti-nausea therapy. So that is what I did. Out of complete transparency, I want to disclose that I have received a complimentary sample of the device and have been trying it out for several days during the worst of the nausea I’ve experienced since the cancer diagnosis.

Let me tell you how this thing works: First, let me tell you that it DOES work for me. If I feel nausea coming on, I fish the bracelet out of my pocket, put a drop of gel on the inside of my right wrist and strap the bracelet on in just the right spot, so that the median nerve responds to the light shock it receives every four seconds. The shock goes right up through the palm of my hand and out between my “bird” finger and my ring finger. I guess that must be why they call it the median nerve. It is right in the middle of your hand.

What is supposed to happen inside your body is that the median nerve triggers the “vomit center” of the brain via the vagus nerve. This gentle pulsing stimulation seems to work to disrupt that nausea reflex when I wear the bracelet and have it turned on. And, the best part, is that it works in less than five minutes. It quickly makes the nausea go away!

I will ask Dr. Pippas for a prescription for the Nometex device next time I’m in his office. Now that I know it works for me, I won’t want to be without one in my pocket should the need arise. The other thing I found out during my research of the Nometex device is that patients who have pacemakers should take care to make sure they follow directions for the proper use of the device.