Columbus and the Valley

Untethered, But Not Unhinged

This post is a stream of consciousness update. Please excuse the lack of my usual attention to the conventions of acceptable language and grammar. I’m banging this one out. Dr. Pippas walked into our exam room this afternoon at about a quarter ’til 6 and we got down to business. I think today was our longest clinical conversation of the entire 8 years of our doctor patient relationship. This brilliant, good man has never disappointed me. He called us late last night with the sole purpose of giving us a night of good rest in advance of our meeting today. He knew a word from him and the better-than-we-thought-it-would-be news about my latest wrasslin’ match with kidney cancer.

We talked for over 40 minutes, not rushed, open to our questions about what we’re dealing with, what courses of action we could see coming, how to beat it again. His usual greeting, a pitch-ascending, “Michael” then he tips his head back, engaging his bifocals to get a sharp look into my eyes. He gets right in there, knowing the eyes are the window to one’s soul. I answered back, “Andrew,” and thanked him for being the kind of physician who calls a worried patient after a brutal day at the office seeing no telling how many other worried people.

I know we’re special to him, too. We have overcome seemingly insurmountable odds together, to date avoiding life-altering, permanent physical debilitation. I’ve had multiple surgeries (left kidney radical nephrectomy, lymph nodes, corpectomy of L2 spinal vertebra, laminectomy (8 weeks later) from L2-L5, thyroidectomy, knee scope, 32 grays of radiation beams and countless hundreds of needle sticks, claustrophobic rides in giant metal tubes, gallons of barium, bucketsful of pharmaceuticals. Yep. I knew early that my job was to stay alive until something that can cure me comes along. Already there are many more drugs than were available in mid-May, 2009. We have choices, based on my case.

I made a decision on June 9, 2009 to write our way through this. Last time I tried to measure my writing output, I was north of 300,000 words. I tried to tell the story the way it went down. From December 5, 2010: “Back From the Snake Pit.”

I wanted to leave electronic breadcrumbs for the ones coming behind me. Kidney Cancer is a tough diagnosis. Faith in God, trust in your medical team, support from your friends, understanding creditors, a rock-solid marriage, children who tested us as parents, but who are always present, and loving, and engaged in our familyness. Those four sons possess characteristics that indicate our every prayer for them to be smart, kind men has been granted. What a blessing it has been to have spent relatively few hours of our lifetime as parents worrying that one of them had gone off the rails and were going down a bad road. Today I realized with complete clarity how much more difficult these last 8 years would have been if one or more of them had gone bad.

“Make good choices.”

My spine is being attacked by an aggressive, fast-growing renal cell carcinoma metastasis in my L1 vertebra. The screw that Dr. Michael Gorum put there on August 19, 2011 during spinal fusion surgery is now embedded in this new tumor. Regardless of what procedure/medication is used to kill the tumor, I will imminently require another spine surgery with longer hardware that can bridge up into my thoracic vertebrae in search of solid bone that will hold a screw. We haven’t met with Dr. Gorum yet, so this is our and Dr. Pippas’ discussion about what will be needed. The tumor has broken through the outer lining of the vertebra and my spine is dangerously unstable at the moment. No horseback riding he says. Don’t fall he says. Some quick decisions need to be made and we need them to be the right decisions. No pressure.

Tomorrow I’ll send several packets of information to several kidney cancer specialists for an independent review and some remarks on how they’d recommend we proceed. Thank you Dena Battle and KCCure. At this moment, I’m not sure where treatment will take place. If we can do it here, we’ll be at Midtown Medical and the John B. Amos Cancer Center. If we need to travel anywhere but outer space, we’ll be traveling. We’ll be praying for the right people to be placed in our path. At this moment, more so than at any other crossroads of my medical life, we will be in a state of complete faith, untethered, but not unhinged. Enveloped in God’s arms with an army behind us.

We’ll see Dr. P in 10 days. The plan will be in place by then. We left Andy’s office today encouraged by his soothing words, his sincere grief for our plight and his heartfelt hope, conveyed in looks, hugs and purposeful touch. I love him for what he has done for me and for our family. I still have both of my parents and I hate cancer for flipping our lives upside down. Jill’s mom, Betty Owens has had to live with losing a son, and because we have sons, I can imagine the emotions that our parents are living with. This isn’t the way it should ever be. It hurts too much. I want to live so that my when my parents leave this world, they will leave it without ever having known what losing a son feels like.

I want this post to speak to Ann and John: Thank you for giving me everything I needed to make it to today. You have given Eric and me a good name, a joyful home, the gift of your strong marriage and spiritual, financial and emotional support in good times and bad times. There will more good times. I’m sure of it.

Jill is by my side. Always. When she grabs my hand will her thumb or mine be on the outside?

Let’s go write our next chapter.

Cancer Flip Book

Thanks to good friend, David Fletcher, I just received 158 pages that chronicle my life with cancer. Jill and I, after consulting with our medical oncologist, Dr. Andrew Pippas, have decided to make the long trek out to Houston, Tex. for a consultation with their genitourinary team. I hope to be able to meet with Dr. Eric Jonasch and Dr. Chris Wood at M. D. Anderson Center.

The medical records department at the John B. Amos Cancer Center has put together the five items that were requested from M.D.A.:
• Latest lab reports
• Radiology reports from day one to current
• Pathology reports from day one to current
• Treatment reports from all procedures
• Last four doctor’s notes from Dr. Pippas

158 pages later, I am holding my cancer life in my hands. Charlotte, the handsome sounding woman on the other end of the phone in Houston in the genitourinary department at M. D. Anderson Center asked me to fax those pages. She says they’ll ponder them in a team setting and either accept our requests for doctors with whom we wish to confer or they will, based on my case, assign us to physicians who can best meet our needs.

So I loaded up the fax machine with the first few pages and stood there, propped up on my elbows and relived the last three years of hell in chronological order, beginning with the diagnosis from Dr. Mike Lake, and then on to paperwork from Dr. Ken Ogan at Emory Healthcare, who was the surgeon who performed the left radical laparoscopic nephrectomy in June, 2009.

A sympathetic wave of nausea struck as I remembered the pain I was in. It was partly physical, but it was mostly emotional pain in my mind’s eye as I headed into surgery a little over three years ago. Like a old school flip book, as the fax machine thumbed the pages into the hopper, I saw an animated, jerky, freeze-framed flashback of what it has been like living with cancer.

I’m a big fan of the Fox Network TV show, “So You Think You Can Dance.” One of the 20 finalists competing for this season’s title is a young man from Duluth, Ga. whose dance specialty is called animation. Here’s a clip: http://www.youtube.com/watch?v=bkTgg-709D4

Watching him dance is like watching an old newsreel at the movies when I was a kid. His eerie moves are like nothing I have ever seen and this herky-jerky feeling I get when I watch him is the way I felt today as those pages slid through the fax and on their way to a place that I hope can heal me.

I’m fairly sure that I’m going to need at least one more surgery. Two days ago I was outside our office talking to my dad when my cellphone rang. “Mike, this is Mac Molnar. Mike Gorum and I are sitting here looking at your CT scans and I want to talk to you,” he said. Basically he told me that he didn’t want to do the surgery and that it made a great deal of sense to go back to the urological surgeon at Emory who did my nephrectomy.

This is what I love about the incredible care I’ve received here in Columbus during my illness. I love a doctor who will tell you that he is not the best person for you for a particular procedure. Mac has operated on me twice. He was the “gateway” general surgeon who got neurosurgeon, Dr. Mike Gorum access to his targeted spot at my spine. That seven-plus hour surgery was intricate and difficult. They did beautiful work in a valiant effort to rid my spine of the tumor that had ravaged it at the L2 vertebra. When Mike realized that he couldn’t completely take the tumor without killing me right there on the table, he stopped and they finished up. These guys are the best at doing huge, difficult surgeries and they also have the balls to say when there is either another surgeon or another type of treatment that needs to be brought to bear.

In my case, Dr. Gorum realized that stereotactic radiosurgery was what I needed to kill the tumor and eight weeks later, after an emergency laminectomy by Mike’s partner, Dr. Marc Goldman, not only was the tumor eradicated from my spine but my legs and my ability to walk were spared. I owe these men and all the caregivers who have touched me a great debt of gratitude for preserving my way of life.

So here we are, three years out from my original diagnosis, nine months from my last back surgery and eight months out from the second stereotactic radiosurgery treatment to my spine. I know I have a 3.9cm tumor on my left adrenal gland that is almost certainly my third round of metastatic disease. In my last post, I shared that I have high hopes for a good outcome from a surgery to remove the offending gland at the hands of just the right surgeon.

I’m really not afraid of this surgery. I believe I have a good chance to move on from it. What I haven’t shared is the thing that I am most afraid of. There has been an apparent simple cyst on my remaining right kidney, Strainer, that seems to have decided to grow. The fact that it is larger worries me. If I find out that I’ve been dealt the worst possible hand and that I have bilateral kidney cancer, then I need to know that sooner than later. I will have to have kidney-sparing surgery at the very least and I don’t even want to ponder what might be the worst outcome of that finding.

Dr. Molnar says that in his estimation, “going in through the front is risky because you’ve already had one big surgery from that angle and things might not be where they’re supposed to be” due to adhesions, scar tissue and the general disturbance of them rooting around looking for suspicious lymph nodes during my Emory surgery. But, he said, going in from the front would give my surgeon the opportunity to “get a look” at Strainer and allow them to biopsy that tissue to find out what we’re dealing with. Going in from the back would be an easier way to get to the adrenal gland, but I would suffer a lengthy recovery period. By doing it that way they’d have to make another incision and basically do two surgeries under one anesthesia to see what is going on with Strainer.

So, we’re packing up for a short in time but long in miles road or plane trip. Charlotte at M.D.A. says that after they get my files, they’ll be able to schedule an appointment after two days of study. That gets me out to Monday. I hope I’ll hear from her on Monday with a date that we can be seen.

I apologize for the length of this post. It is obvious to those of you who are regular readers of this blog that I am scared shitless. I seem to be long-winded when I’m worried, and in spite of my little dose of Celexa, I’m more than a little on edge.

So, what we need right now is more cowbell! Come out tomorrow night, Friday, June 29 at 6 p.m. in the 11oo block of Broadway and join a big bunch of us at https://www.facebook.com/UpTownDrumCircle. It is going to be hot as a two-dollar pistol, but the beat will take you someplace cool! I promise.

 

 

NED Again, Thanks Be to God!

If you read my blog, you have heard my declarations of how damn good it is to be able to get great cancer treatment here at home. You’ve heard me say how much I appreciate the John B. Amos Cancer Center, all the people who work there, and most specially Dr. Andy Pippas and his right hand, Cindy Ivey.

Here’s another story that illustrates just how incredible the care I’ve received here has played out: You all know how important the MRI scan that I received on Tuesday was. It has been five months since my third back surgery (the one Dr. Marc Goldman did that stopped the chronic pain and essentially kept me out of a wheel chair), and about 7 months since Dr. Mike Gorum and Dr. John Cabelka  (and a host of other physicists, technicians and support staff) attempted to kill the renal cell cancer tumor in my spine. This MRI was huge! This is probably the most anxious I’ve been, because a good report would mean I might have a chance at significant, disease-free survival. On the flip, a bad report would signal the beginning of some negatively life changing other procedures or nasty drug side effects and a likely significant shortening of my potential life span.

This is how much I love the care I’m receiving here at the hands of medical professionals who also happen to be my friends. Mike Gorum has a vested interest in my life. He has performed (along with Dr. Mac Molnar) a huge spinal operation on me that culminated in the rebuilding of the vertebral body at L-2. He has watched me suffer with crippling pain and slowly begin to regain my strength and vitality.

Mike was finished with his work on Tuesday, fairly early in the day after a very early start, but he came back to the hospital to be in the room in which the technicians were administering my MRI. He literally watched the scans while they were happening. He sent me a text, “MRI clean.” That evening, Mike and his wife, Tammy, met me at Ride On Bikes and they rode with me for my first bike ride in over a year. I tried to tell them how much it meant to me to have such care and concern at a time when I may have most needed it in my life.

That is what getting treatment at home looks like. These medical professionals are our friends. They live here. They rear their children here. We see them around town at plays, restaurants and music events. If you are asked to support local medical charities, please dig deep. We need a medical school here, we need a new women’s and children’s center like the one being planned at Columbus Regional Healthcare System, we need expanded facilities at St. Francis hospital.

We have taken advantage of seeking second and third opinions (with the urging and blessings of Dr. Pippas), but if at all possible I want to be here for treatments.

I’ll get off my soap box now and tell you what I just read in my MRI report. My spine is in perfect alignment, held in place with two titanium plates and four screws, for which my insurance paid $43,000, if you can believe that! There is no evidence of metastatic disease! There are no soft tissue abnormalities present near my spine! In short, it appears the stereotactic radiosurgery that they didn’t get right at Emory, was administered perfectly here. The tumor in my spine appears to be dead and new bone is growing, thanks in part to the monthly injections of Xgeva, (http://www.xgeva.com/WT.mc_id=GooglePaidSearchBrandXgevaURL&WT.srch=1) a drug that should strengthen my bones and make it more difficult for the establishment of another renal cell metastasis.

Here is a snapshot of the history  with Renal Cell Carcinoma:

Mike Venable

59 years of age

• June 11, 2009 radical left nephrectomy + 12 lymph nodes (1 positive for RCC)

• August, 2009 ASSURE clinical trial (Sutent/Nexavar/Placebo) Ultimately completed trial.

• September, 2010 discovered 2 cm tumor in spine at L-2 and unblinded from trial (Placebo arm, thank God, but I knew that all along)

• October 21, 2010 Biopsy of spine determined the lesion is a metastatic RCC.

• December 2, 2010 Stereotactic Radiosurgery (SRS) at Emory Atlanta (went for for CT simulation on 11/17/2010)

• March, 2010: oncologist says that I’m NED.

• August, 2011: Oncologist says the tumor at L-2 wasn’t completely killed and it is growing again.

• August 19, 2011: Lumbar fusion surgery and fixation with pedicle screws and fusion with bone morphogenic protein at L 1-3.

• Three weeks post surgery, developed severe #10 back pain. Treated with time-release morphine and dilaudid for breakthrough pain.

• Awake at 4:30 a.m. on Saturday, October 8, 2011 and squatted down to remove power plug from wall socket. Complete loss of strength on right side caused me to fall over to my right.

Got to bed and called my neurosurgeon early Saturday morning. He instructed me to get to emergency department immediately. His partner, Dr. Marc Goldman met me and we went immediately to surgery, where he performed a lumbar laminectomy (bilateral inferior L1, complete bilateral L2 and bilateral superior L3). Pain was immediately gone and according to physical therapist, strength can be regained in legs with therapy, which I’m doing now.

• On Monday, October 10, I was moved by ambulance to the John B. Amos Cancer Center, where I was simulated for stereotactic radiosurgery to attempt to kill the tumor in my back. Got food poisoning from bad hotdog on Monday evening, so we delayed SRS until Thursday, October 20. 16-greys of radiation in a single one-hour treatment.

• Scans in December, 2011 show NED. Got second opinion on December 30, 2011 from Dr. Janice Dutcher at Roosevelt Hospital in New York City, NY. She advised to stay course, but would administer HDIL-2, if we wanted to try it.

• Got third opinion from Dr. Dan George at Duke University Hospital on January 11, 2012. He recommended to stay the course and said he was “guardedly optimistic” about my long-term disease-free survival.

• Scans in March, 2012 show NED.

Thank you for all your continued prayers for me and my family. I am a walking, breathing, living example of the power of prayer, good medical treatment and great attitude. Sorry for the length of this post, but I know you want to know about my latest scans.

Peace…

 

At the Fulcrum

Today is the first day of spring, 2012. As the pollen falls and bursting buds imbue the world with color and fragrance, I’m contemplating my future. This is day two of my latest round of scans, the windows into my body and the prognosticators of my chances for survival.

One hour in a clacking, thumping, thrumming MRI machine. One hour, in between bags of fluids force fed into my vein, and then the wait. I think Dr. Mike Gorum, one of my neurosurgeon spinal structural engineers,  is as anxious as I am to see this round of scans. If Mike and John Cabelka have killed this tumor, I have a great chance to live with this cancer diagnosis. If the tumor is still growing, my chances for a good quality of life for the remainder of my life are slim.

The scans today are going to tell that tale. I want to see the end of that tale. If my life was a book, I’d flip over to the end to see how the next few months are going to play out. I plan on this first day of this spring being the first day of my life’s spring. The good news that I’ll get today, or some day soon, will be the bellwether of just how far into the future I’m going to be allowed to get.

I’m not afraid. I feel like the bumper sticker I’ve seen on trucks driven by obvious rednecks: “I ain’t skeered!” I was talking to a cancer “sister” the other day, extolling the virtues of a small dose of an antidepressant — in my case, Celexa — as a vital part of living with cancer. Without noticeable side effects, my edges are rounded. I can walk straight toward this thing that is trying to kill me without fear or trepidation. People tell me I’m brave. They say I’m a shining example of how to live with cancer. I’m just being the only way I know how to be. I think Dr. Pippas’ urging me to take the Celexa has been so important in my overall comfort, despite my awareness that there are malevolent forces at work inside me.

The love of a good wife and good sons and the arms of my community enfold me as I watch the liquid drip into my arm and contemplate the walk down the hall to be slid into that tube of medical magic. Please pray for good news for us today. I have the feeling that this day is my life as a balanced apothecary scale. The right news today would slip enough weight into the “Good” side to tip me toward good life.

It is so good to feel like writing again. Thanks for going with me.

The Young Bull says to the Old Bull…

Friday is the day Dr. Pippas does his administrative work. I don’t know how the man gets everything he has to do…done, even with a Friday to tie up loose ends. Since Friday is his paperwork/research day, I was hoping he’d be able to sandwich in a phone conversation with me about our trip to Durham, NC to see Dr. George.

He returned my call within minutes and I told him Jill and I had heard what nurse friend Sandy Gunnels called a “diametrically opposite” plan of action from the one I had heard from Dr. Janice Dutcher on our visit to see her in New York City. Renowned renal cell specialist, Dr. Dutcher says that HDIL-2 (high-dose interleukin 2) is our next-best course of treatment.

Renowned renal cell specialist Dr. George, at Duke University Hospital, says HDIL-2 is way down the list of things he’d recommend we do right now.  Dr. George was emphatic: “HDIL-2 will not keep this cancer from returning if that is what it wants to do. If you don’t have disease anywhere other than your spine, and if it returns there, you have a better chance of controlling it with a TKI (tyrosine kinase inhibitor). Hands down,” said Dr. George.

Dr. George continued: “HDIL-2 could kill you. It could create a cardiac event. Those things are rare, but possible. What it will do is ravage your body, potentially causing organ damage and positively causing great suffering.” Basically, he doesn’t see any value right now in putting us through this toxic treatment.

As Jill and I sat there and as I realized where our conversation with Dr. George was going, I felt the air leaving my body. The palpable let down of a fight reflex when your attacker has either stood down or walked away. There was an immediate transformation in me from fighter to waiter, and not the kind of waiter that gets a tip for good service. The kind of waiter that sits at a bus stop on a graffiti-covered bench in the cold, waiting for the next mode of transformation (intentional use of wrong word) to move you toward a tangible cancer therapy.

I’m like the old bull in one of my favorite old jokes and the vulture on a great T-shirt: A young bull and an old bull were standing on a hillside looking over a valley pasture of grazing cows. Young bull says to the old bull, “Why don’t we run down the hill and screw one of those cows?” The old bull says, “Why don’t we walk down there and screw all of them.” The vulture on the T-shirt is standing on a limb, high up in a tree, looking extremely vulturish. The caption says, “Patience, my ass, I want to kill something!”

I want a plan. I want it to be as aggressive as I am. I don’t see myself being comfortable waiting. As I said in my last post, I’m locked in a perpetual state of advent.

The really good news is that Drs. Goldman, Gorum and Cabelka and a host of other physicists, pharmacists, physicians, nurses and techs have done great work for me. The tumor is my spine is gone. There is nothing visible anywhere in my body that makes my medical team concerned that my life is being threatened. I can hear you saying, “why don’t you just quit your bitching, go back to your life and be happy you don’t have to take these awful drugs!” The answer to that is, “I know this cancer WAY better than you do. I now how sneaky it can be and I know how quickly it can make you dead if it decides to light up and run.” This knowledge is what makes me restless.

I have talked to Dr. Pippas about a third opinion — a “tie-breaker.” We’re discussing that now and I told Dr. P that I think this next opinion should be made without me in the room. I want to send my records to another RCC specialist and have them weigh in without my large, vocal, demanding personality in the room. Jill thinks my running commentary could have skewed the conversations with Drs. Dutcher and George. She’s probably right. She usually is.

So, for a short time, we’re back to waiting. Dr. George will call me within two weeks and let us know if there is some type of new scan available that is super high-definition with kidney friendly contrast media. That would be great, if we could have some type of super-scan that will once and for all determine if there are any bits of cancer in other areas of soft tissue or anywhere else in my bones. If we have that scan and it comes back negative, I can relax and be OK with another wait.

I will NOT, by God, be standing here flat-footed, doing nothing and be taken down by this cancer. If this bitch wants me, it is going to have to come at me with a bloody mace in one hand, a butcher knife in the other and a mouth full of bloody teeth. If it gets me, I’ll be out of bullets, with no fingernails left. I won’t be sitting in this chair waiting to hear the tap on my front door. You can take that to the bank.