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…..

 

Still On Hold

I just got home this afternoon from spending the early part of the weekend with my brother, Eric, at his hunting lease south of Albany, Ga. I went by The Medical Center lab on Thursday morning to get my blood work done and then headed out of town to see Eric. On the way down there I got a call from Dr. Michael Morse’s physician’s assistent, Cindy Simonson. She said, “Mike, your creatinine is still at 2.3. Dr. Morse is saying no to any further HD-IL2 therapy. So, you’re on hold for coming back on Sunday and I’ll let you know what comes next.”

So, I decided to go see my brother and do what we do best….laugh. I have laughed my guts out all weekend long and I haven’t given cancer a single thought. So, we’re not going to Duke tomorrow and I don’t have a single idea what is going to happen next. I’m sure we’ll be bringing in a nephrologist for consultation. And, I’m sure I’ll be talking to Dr. Pippas, Dr. George and Dr. Morse about next options. I guess they’ll scan me anyway to see if the first half of the HD-IL2 therapy, though abbreviated, did me any good.

I really hope the creatinine is going to settle back down. If it doesn’t, we’ve really got some tough ground ahead. Not being able to use contract media for scans might just be the most scary change we’ll have to make. If I can’t stand the contrast, all of my future scans won’t be worth much. They’ll be trying to manage a scary disease with blinders on. I don’t know the answers to any of these questions at this point. I’m just speculating and I won’t know the score until we have some of these medical consultations.

Sorry for the short post. I wanted to bring everyone up to speed and I want to go talk to my wife. I’ve missed her.

Hoping TKI Delivers TKO

Just when you thought it was safe to go back in the water….

I got a call from a physician’s assistant in Dr. Lance Pagliaro’s office today. She is part of the team that is responsible for my care at M. D. Anderson Cancer Center. She, along with Dr. Pagliaro and Dr. Christopher Wood as well as a host of pathologists, radiologists and other “ists,” all work in tandem within the genitourinary oncology clinic.

She informed me that the M. D. Anderson radiologists’ reading of the CT scan that I had done at The Medical Center in June showed that in addition to the left adrenal metastasis (which has been confirmed to be renal cell carcinoma), I also have two small nodules on the upper pole of Strainer, my remaining kidney. That is not what I wanted to hear, but this news confirms that the time has come for me to take one of the tyrosine kinase inhibitors (TKIs) that I have not wanted to have to take.

I have enjoyed a good quality of life during most of the just over three years since the diagnosis of renal cell cancer in May of 2009. These drugs are very potent (an oral chemotherapy is the closest description I can muster) and can wreak havoc with a body. Depending on which one I choose, I’ll likely have to deal with some significant side effects. The hope is that I’ll respond well to the drug and that these three existing tumors will shrink and allow the inevitable surgery to be done sooner and be more successful.

I will discuss my decision with Dr. Pippas here at the John B. Amos Cancer Center who continues to oversee my case. We continue to be confident that we’ve made good decisions throughout this cancer journey and as we prayerfully consider this decision, we plan on making the right one.

I’m guessing the therapy will begin soon, so if I’m off my game the next time we talk, I hope you’ll cut me some slack. By the way, the doctor said I should definitely not vacuum, take out the garbage, empty the dishwasher or cut the grass. I have also been told that I should continue to pester Marquette McKnight, as her only (and also faux) brother.

The Sign Said, “No Goitering!”

The last time I spent the night in a hospital with a condition that was NOT cancer was back in the 1980s. I sustained an injury to the tendon that controls my left pinky finger. I was at Julene and Andy Buice’s home. Andy had a motorcycle accident several years ago and lost his life —  I lost a great friend. Their little house was across Cherokee Avenue from the Columbus Country Club and the driveway was a bridge that crossed over Weracoba Creek.

Even after all the partying we did at that house, not one of us ever ended up in the creek. I did have an accident there one night that ultimately sent me to the hospital for surgery. After visiting a hand specialist at Georgia Baptist Hospital to confer about my condition, we decided to have the surgery done here to reinsert the tendon that had been dislocated when I tripped over Julene and Andy’s sleeping black cat, who also just happened to be sleeping on a black rug. I stepped. The cat hissed and yelped. As I jumped out of the way, my left hand slid down the wall as I tried to gain control of my fall. My little finger hung on the moulding around the door frame and my 160 pounds kept going.

Okay, so I’ve gained a little weight.

After that injury, my left pinky finger kind of flopped in the breeze. I couldn’t hold it tight against my other three fingers. This was such an unusual injury, three orthopaedic surgeons were in the OR with me. The surgery was successful and I spent one night in St. Francis Hospital. As I found out yesterday, being in the hospital is never a boat load of fun. But, being in the hospital with almost anything that is NOT cancer, can be quite fun if you look in just the right places.

Back in the 1980s when I had that finger injury my old friend, Larry Aglialoro, came by to see me and we were the only two people in the room. Larry and I probably have enough on each other to get in deep trouble and I will be taking those stories with me to the grave. I can tell this one, though. Ag was looking out the window and he said, “Mike, there are a bunch of nurses in that building over there.” I had just had a big ol’ IV narcotic pain killer pushed into my vein and true to it’s word, I was feeling no pain.

“Ag, help me get up out of this bed. Come on, I need you to help me get up on that ledge. I’m gonna moon ’em,” I said. I rolled out of the bed, pushed my stand holding a bag of fluids over toward the window. We pushed a chair over to the ledge, Ag gave me a boost and I stood up on the ledge and pressed some ham on the window. I stayed up there long enough to make sure we made eye contact with them and I think one of the young women gave me two thumbs up. In fact, I’m sure of it. The memory of Ag, dressed in a suit and tie, hoisting my half naked, hospital gown clad self up onto that ledge still makes me laugh as I sit here some 35 years later.

I have been sheltering an embarrassing secret for the past couple of years. The sound of the word, goiter, doesn’t roll very easily across my tongue. When I think goiter, I see an Amazonian indian with his dark skin painted white. He has an enormous bow, strung with God knows what and the quiver of four-foot-long arrows are coated with curare. That is exactly was I see in my mind when I think of the word goiter. Hey buddy, is that a goiter on your neck, or are you just glad to see me!

In fact, I can’t believe I’m writing about it now. I used a collection of code words when I referred to it in my talks with Jill. My surgeon, Dr. Mac Molnar, said, “Mike, this is the biggest goiter I’ve ever seen! Probably weighed a couple of pounds. It was the left lobe that had grown down into your chest.”

I knew that I had begun to experience difficulties swallowing and it had become very difficult for me to speak loudly enough to be heard in a noisy room. After hearing how freakishly large this goiter was, I’m really excited for everything to be healed. I suspect that I’ll have a much better quality of life with it gone. It is a shame that they had to send it off to be biopsied. It would have made a great anchor for my fishing kayak.

We’re home from The Medical Center and will be able to sleep in our own bed tonight. All the staff at The Medical Center were fabulous. One hit, almost painless needle sticks and extremely attentive, kind care was delivered to us with smiles and cheerful attitudes. Everyone seemed to have a kick in their step.

Meanwhile, since I’ve now delivered my goiter and since I’ve written about it boldly and without fear, I am putting it behind me and looking forward to an easier life without the difficulties it caused. The past few weeks have been all about my pushing my fears to the front and talking openly about things that are embarrassing for me to talk about.

A few weeks ago we showed up at No Shame Theater with my djembe drum that Jill bought me for my birthday. At the end of that evening I brought shame on myself and my family. Turns out that for some there is shame at what is otherwise a “No Shame” zone. I reached back and started tickling Jill’s ankle with my fingers. I felt her jerk away and I went back in for another grope. Then a hand appeared on mine and snatched my hand out of the way. Yes, I was playing with a strange woman’s leg. Oh my God, our whole table erupted in laughter during a time when we really shouldn’t have been laughing. I’ll never be able to go there again.

The thyroidectomy went very well. I didn’t lose my voice, although I am very hoarse and will likely be for a few days. My calcium levels are spot on, which means Dr. Molnar did a good job preserving parathyroid tissue. I was mostly blissfully out of pain and got visits from two of my sons who live in town. I am 59 years old. My sweet parents were at the hospital at 5:30 a.m. yesterday. Ann and John Venable have never missed a single thing in my life. All those Little League games, football games, school plays, concerts, speeches — they have been right there. They are the sweetest parents that I can imagine anyone having. They have given me a good name, wonderful guidance, unconditional love and encouragement to reach for the stars. Jill and I both have great parents and we are so fortunate to have them close by and solidly in our lives.

I hid the goiter from them too. I was afraid they might shun me if they knew about it. There, now I’ve said the G word out loud. I never want utter that word again.

It Took a Village (Repost)

FYI: This is a repost of my last blog post that many of you didn’t get a chance to read before our hosting company (justhost.com) dropped the ball and left our website inaccessible. They have also said they don’t have a backup after Nov. 23, which means my last two posts have disappeared into nowhere, along with all the great comments we’ve received from many of you. Starting on Monday, we’ll be looking for another hosting company. Here is my latest post:

Oncologists, neurosurgeons, radiation oncologists, family doctors, nephrologists, nurses, techs, physicists, engineers, pharmacists, insurance companies, church family, immediate and extended family and a hoard of friends numbered seemingly like the sands on the seashore — individually, in prayer groups, on renal cell internet forums and on the street. This is my village.

As just a sneak peak at what I have to tell you tonight, I messaged Dr. Mike Gorum late this afternoon to thank him for his good work (good work, that in concert with his partner Dr. Marc Goldman, likely kept me from writing this message in a wheelchair instead of my comfortable leather chair). He said the most un-brain-surgeon-like thing: “You don’t need to thank me, you need to thank a bunch of physicists, engineers and other doctors that work behind this scenes. I just stand out there and take all the credit.”

After the rather curt dismissal we received when we went for follow up at Emory University Hospital in late summer, we began to assemble our village here in Columbus. Drs. Andy Pippas, Mike Gorum, Marc Goldman, Clark Gillett, John Cabelka, Doug Ciuba, Raj Alappan and a host of their PAs, nurses, techs, engineers, physicists, pharmacists and all the advice and drugs they rendered and prescribed. Also, the John B. Amos Cancer Center, The Medical Center, Hughston Hospital and Atlanta Falcons Physical Therapy.

My love fest with our village started from the moment I announced that I had been diagnosed with kidney cancer. It crescendoed on March 19 of this year at the American Cancer Society’s Crystal Ball, where I was this year’s honoree. That was one of the greatest nights of my life. It was very much like being able to attend your own funeral while you are still alive (minus the DJ, band, silent auction, liquor and dancing).

Having cancer sucks, but getting the drop-to-your-knees-and-cry benefit of learning how much you’re loved by your community is a gift that will keep giving until I draw my very last breath. It has been life-changing for me and my family. If you don’t already know how much I love all of you and how much we appreciate each gesture of concern and encouragement, let me be very clear. Our village has healed us, sustained us, fed us — physically and spiritually — cried with us and shouted for joy with us and this has been what has sustained us through dark hours of pain, fear and suffering.

I spent all day yesterday at the JBACC getting fluids. Went back this morning at 7:30 and they stuck another needle in my right arm and kept on pumping. We reported to The Medical Center a little after 10, where they checked my creatinine (1.8, not great, but not bad enough to keep them from using contrast media to enhance the scan), fed me another cup of delicious barium and slid me onto the CT scanner table.

Then it was back to JBACC for an after-scan flush of another bag of fluids to protect Strainer (in case you don’t know, Strainer is the name of my right, remaining kidney). I texted Dr. Pippas’ nurse to let her know that I was in the cancer center, and that it sure would be nice to be able to get some feedback from Dr. P about my scan.

She texted me back and basically said, “Come on down.” Only, it was really up….to the 3rd floor where the team of top-notch medical oncologists ply their profession. So, Jill and I headed on up, signed in, got triaged and settled in to get this very important call to come in to see the doctor.

We were called and made our way back to a treatment room to wait to see Dr. Pippas. After a few minutes, I could hear him dragging my rather voluminous chart out of the door pocket and could see the door handle turning, signaling the imminent delivery of the news we’ve been to anxious to hear.

After a few formalities and the typical barrage of questions from my favorite mad scientist, he opened the three-inch-thick folder and drew out two sheets of paper that represented the salient facts gleaned from the scan that I had had only a few hours earlier.

“This scan is completely clear. There are no metastases in your lungs, abdomen or pelvic area,” was how Dr. Pippas characterized the information. Hallelujah! This is going to be a great Christmas.

In my yesterday post, I outlined two possible outcomes of this scan. This was the one we were hoping and praying for. No Evidence of Disease. NOW, the wolf is still at the door. We will have another MRI scan in about two weeks to determine once and for all that the stereotactic radiosurgery has effectively killed the tumor in my spine.

The MRI could also see if there are any other small soft tissue tumors in that general area. The bottom line is that we (our medical village) still thinks we need to pursue some type of systemic therapy to go after any other cancer cells that might be floating around inside of my body.

Today I heard from a representative from Dr. Janice Dutcher’s office in New York. I have already heard from Dr. Dan George at Duke. After we get the MRI results in mid-December and correspond with those two docs via email and/or phone, we’ll know whether the HDIL-2 systemic therapy is feasible and if so, will schedule it either in New York or at Duke. For all sorts of reasons, I am adamant, and Dr. Pippas agrees that I am not going to settle for any kind of tyrosine kinase inhibitor (read it and weep: http://www.ncbi.nlm.nih.gov/pubmed/19689244) before I know without any doubt that HDIL-2 therapy is completely off the table for me.

So we press on. Happy for the gift of this news so that we can brush cancer aside and enjoy this advent season, watchful, hopeful with the scent of Fraser fir (named for the Scottish botanist John Fraser) in our nostrils.

I am not cured. The chances are high that this cancer will come back. We will remain vigilant, hopeful and keep a fresh can of whupass handy if we need it. For now, we are blissful! I can concentrate on getting back the strength I’ve lost and try to figure out how to properly thank my village for standing by us for the past two and a half years. This time has changed me.

I didn’t intend for this to be a thousand-word post. In fact, when I finish this sentence, it is at 1,104 words. I will shut up, now.

Goodnight!