Columbus and the Valley

RIP Clarence Clemons

I’ve been caught up in a swirling mass of indecision. Frozen in place. Can’t write. Can’t focus. Afraid to look forward. Unwilling to look back. Hung up in the now. It took a dead man with a saxophone to shake me loose. Driving along this morning, heading into town to meet with Dr. Pippas to find out his recommendation for a much-dreaded tyrosine kinase inhibitor medication, I was listening to the Classic Rewind channel on Sirius/XM satellite radio.

Violins and piano — I cranked up the volume until it hurt. Crystal clear highs delivered by tweeters, solid chest thumps from the big woofer that stretches across the back deck of my car and those strains so familiar from Bruce Springsteen and the E Street Band’s, 1975 album, Born to Run. Gooseflesh popped up on my arms. Then Clarence Clemons and his wailing sax delivered the iconic Jungleland solo and it all broke loose. Like a boot off my neck.

I felt my shoulders drop and the tension drain out of my face.

“The poets down here don’t write nothing at all. They just stand back and let it all be.”

My mojo was coming back, compliments of Clarence Clemons, God bless his soul.

Where did I leave you last? Oh yeah, screw Lance Armstrong — blah, blah, blah. And, I was to have scans again in mid-October. There’s been some new and not so good news since my last post. My creatinine levels have deteriorated from a stable 1.8 baseline to a baseline of about 2.3. This will preclude me from having any more CT scans with contrast (unless we’re in a life or death situation and simply must have the contrast). This is going to strongly, negatively impact our ability to clearly see what is going on inside my body in the future.

There is a new radiology group at The Medical Center and I’ve had the great pleasure of meeting the doctor who will be overseeing my case. He’s got a great name. One that I’d like to steal as the name of a character in my novel, if that ever happens. Virginia gentleman, Dr. W. Granville Batte, is a flatwater kayaker and a skeet shooter. I’m looking forward to introducing him to my kayaking buddies. He read my scans and through Dr. Pippas reported that they are stable. That is good news. What we’ve been able to accomplish is to live with this cancer as a chronic disease, not a life-threatening one. It is incurable and if it decides to turn it up a notch, it will kill me. But right now, it is stable and although it presents a challenge, I am able to live with it.

After a consultation with Dr. Dan George and Dr. Andrew Pippas, we’ve decided to take the Votrient route. Pazopanib is the drug name and it was approved for use against kidney cancer in April of this year. Although it is not the most potent of the drugs I could use, it is decidedly more kidney friendly and has a more manageable side effects profile. If you click on the drug name, the information about the drug will open in a new window. Most of the side effects won’t be visible to those around me, hopefully. What will likely happen that will be noticeable is that my hair will begin, very shortly, to turn completely white. Unlike some of the other choices we could have made, this drug isn’t supposed to destroy taste buds. These drugs are very powerful tyrosine kinase inhibitors and though they won’t deliver a cure, they can certainly prolong my life.

So, once we get all the financial implications of our co-pay for Votrient settled (this drug costs north of $100,000 per year), I’ll start taking the medication in a few days to a few weeks.

I’m sorry for the long dry spell. I haven’t been able to write and I’m just glad I was in the right place at the right time this morning for The Big Man to jolt me out of my writing reverie. This blog is a tribute to musicians of every stripe. Just how much good music does in the world is underrated.

Rest in peace, Big Man…..

 

There’s a Hole in Daddy’s Arm

I’m in the infusion suite at the John B. Amos Cancer Center. Sirius Deep Tracks channel coming through my headphones, needle in my arm pumping fluids in advance of tomorrow’s MRI with contrast. I’m in my favorite spot in the southeastern corner of the room. I guess it is my writing spot, because when I’m here, in spite of all the carnage that is taking place around me, I’m immersed in music and inundated with words.

This MRI is one of the regularly scheduled ones. Nothing alarming going on in the chest/abdomen/pelvis zone that I know about. In the interim between my last stream of posts and today, I’ve had a thyroid biopsy and am scheduled to get the results next week. I’m holding onto hope that this is a benign situation. Nobody deserves to be pounced upon by two different cancers. But even if it is bad news, thyroid cancer is kindergarten compared to renal cell cancer. I’m truly not worried about it. Maybe it is the celexa. Maybe it is my battle-hardened badassness. Or, maybe I’m just stupid.

I have really gotten tough minded about cancer. I feel badly about my response to a longtime, good friend’s admission to me that he is facing early-diagnosed prostate cancer. I remember thinking, “that ain’t shit, brother!” But, thankfully, I tempered my response to something like, “Well, that’s a good one to get if you gotta have one,” or something like that. That was insensitive, at best, and really downright rude. ANY cancer is scary, unwanted and threatening to someone who just got the diagnosis. I intend to try to soften my crusty, cancer-scarred exterior when I’m talking to cancer newbies from this point forward. I should have provided a soft shoulder and a dose of hope for a good outcome. I’d like to put that one on rewind. The one I likely offended reads this blog. This serves as my apology to him and to his beautiful wife. The older I get, the more apologies I find I have to make. I hope I’m around long enough to irritate many more people. I find a sincere apology can go a long way toward mending fences and sustaining long-lasting frindships.

I’ll be writing about the upcoming MRI results and the feedback from Dr. Leichter about my thyroid situation. I’m looking for good news from both of those tests. I’m energized with spring in the air and the prospects of getting back on my bicycle and getting back onto the water in a kayak.

If you’re a regular reader of this blog, you know about my interest in drum circles. I have started a facebook page that I hope is going to help us draw a crowd for the launching of a drum circle in UpTown Columbus. Please take a look, like the page, and get ready to shake something, even it is just your backside. Here is the facebook page: https://www.facebook.com/CSGDrumCircle

 

 

My Sock Monkey is Fierce!

I got the phone call we were looking for yesterday from Dr. Pippas. He has managed to work with Dr. Dan George at Duke University Hospital to get our consultation appointment moved up a full two weeks! The new appointment time is 1:30 p.m. on Wednesday, January 11.

I have filled out all my new patient forms online (how nice to have them digital!) and have submitted them to the doctor’s office. The scheduling person, Stephanie, wasn’t able to answer all my questions about what might happen while we’re there. Will there be blood work? Will there be scans? Will I take a treadmill stress test? I don’t know the answers to these questions, so I will be packing Xanax, just in case they decide to slide me into a tube, either feet- or face-first.

Getting this appointment moved up is HUGE for me. I have been a basket case, although a calm one. The way my mind works is that once I have made it up regarding a particular course of action, I simply cannot sit around and wait for things to happen. I want to go NOW. The tone of my phone calls to Dr. Pippas’ office has been, frankly, more intense as I have made them. I think I have been somewhat of a pest, but we have a small business to run and the possibility of the first vacation we’ve taken in a long, long time scheduled, too. We need to keep the business running and we want to be able to take this Caribbean vacation with two couples of our best friends.

I am thinking, “If we could get this ball rolling, we can do the therapy, I’ll have time to get over it and we can still make the Water Island trip.” That really wasn’t practical, given the time some of this stuff takes. So, with the great gift of an earlier consultation appointment with Dr. George, we’ll be able to learn all we need to know about whether I’ll qualify for the treatment, what we have to do to prepare for it, get out the April magazine and still make our trip. Then, if Duke’s scheduling will permit, we’ll start the treatment as shortly after March 5 as we can.

With the usual one week on and two weeks off and one week back on scenario, by mid-May I should be cancer free, ready to hug my family and friends, golf, fish, kayak and continue to look for ways to embarrass my children. If I make it through to the healthy conclusion of HDIL-2 that I envision attaining, my next point of focus will be to urge the appropriate parties to produce us a grandchild.

None of our sons are married. Some are more seriously dating than others. We’d appreciate them getting things done in the right order and all that – but damn it, I want a grandchild!

When the HDIL-2 purges me of cancer, I also intend to write about other things in the blog than kidney cancer. There is so much more than I can write about! My head is completely stuffed with some useful things to impart and also some useless drivel that only weird people would want to read. Since I have quite a few weird readers, they’ll be happy with those writings, I’m sure.

Jill and I are reading now, trying to prepare for the HDIL-2 treatment. We won’t know which of the awful potential side effects will bother me. But we have to assume they all will, and be ready with the proper clothing, shoes, lotions, diversions and drugs to counteract them.

One of my favorite tree-hugger, animals-are-people-too people, Callie Sprague, has convinced me to use visualization so that my mind will condition my body to find and kill these cancer cells. What I may not have said about this particular cancer and the HDIL-2 therapy is interesting. The very toxic drip that they’ll mainline into my heart every 6 hours doesn’t kill cancer. It is designed to ramp up your immune system and allow it to literally rise up and kill the cancer cells, no matter where they are in your body.

If you’re a regular reader of this blog, you know that Kate Nerone gave me a sock monkey after reading one of my posts in which I referred to this lovable sock-skinned creature. Until that monkey ripped the face off that woman in Stamford, Conn., I would have never considered a monkey as my preferred mascot in an ass-whipping competition. Something with a more fierce reputation, like a honey badger, would surely be a better talisman for my upcoming battle.

Thanks to Kate, I have a sock monkey in hand. Last time I checked my office, there was not a honey badger in sight, so I will be taking my sock monkey with me for all the HDIL-2 treatments. The monkey’s name is Robert Charles (R.C.) Killer. He’s a seasoned killer, so tortured by renal cells as a baby monkey that he’s developed a lethal hatred for them. A lifetime of bullying by renal cells has hardened him into a single-minded killer. Killing RCC is his only past-time. Uninhibited by hobbies, he has devoted his entire life to killing RC cells within my body.

Sock monkeys mate for life. The bonding begins as they’re packed for shipping to their new mate. As Kate boxed Killer to send him on his way, the brief stretch of darkness and the incessant jarring as the package made its way to me only served to make him a more lethal killing machine. There is nothing more deadly than a pissed off sock monkey!

When Killer arrived on my desk, I could feel the pent up energy that lay under that packing tape and cardboard. As I ripped the packing material, I had the sense that whatever was inside was doing its job to get out. I could feel the strength of the limbs and claws scratching their way out in order to release the creature into my arms.

Killer has been patiently waiting for me to utilize his particular brand of killing skills. He has perched on a piece of furniture in my office with a cocky look that says to visitors, “Yes, I know I look cute, but I can rip your face off in an instant and show no remorse! Go ahead, try me.” Honestly, I feel much more secure in my office just knowing that Killer is standing guard.

He was excited to know that I have a real mission for him that will utilize his considerable skills for something more than guarding a magazine publisher’s office. The typical visitor to my office is a fairly non-threatening person. They’re generally not scary, except for the occasional redheaded public relations person who comes by from time to time. Killer is beside himself with just the right amount of swagger and professional pride at the knowledge that he’s about to go up against his most dangerous opponent yet. Renal cell cancer is deadly, unpredictable and sneaky, but Killer has been trained for this day.

JIll, Killer and I are ready to go to Duke to hear Dr. George’s plan for our future in this next phase of our battle with kidney cancer. Some people will likely make fun of me for carrying Killer. They just better hope I don’t turn him loose on them.

What Killer, what did you say? “Kidney cancer is my bitch!” Well alrighty then. Let’s go to Duke!

Waiting Game

On Thursday morning at 5 a.m., Jill and I rolled out of our driveway. I was in the passenger seat, like a reluctant Miss Daisy, heading for the Hughston Hospital for the second biopsy of my L-2 vertebral body in 8 days. This one was quite a bit more difficult than the first. [Read more…]