Columbus and the Valley

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.

 

 

New News and We’re Houston Bound

We just returned to the office after our scan follow up with Dr. Pippas. As soon as he walked in and gave us that look, I knew it was on. I have another “lesion” to deal with, this time on the left adrenal gland, near the site of my total left nephrectomy in June of 2009. It is likely a metastasis from the original renal cell carcinoma and it has doubled in size over the last year and is a 3.9 cm mass.

Dr. Pippas has reiterated on a number of occasions, including today, that this (not in general, but the one I have) cancer is a fairly indolent disease. Jill and I decided today that we’re going to schedule a trip to Houston to M. D. Anderson for a consult to determine what is the next best option. Based on our discussions today with Dr. Pippas, we could have surgery to remove the left adrenal gland or maybe radiation to kill the tumor.

We have scheduled an appointment with Dr. Mac Molnar (he’s already been body spelunking inside of me twice) if a surgery is what we choose. Thankfully, we have some great local general surgeons here in the Columbus area.

Honestly, I am caught off guard with the adrenal gland issue. I have spent a great deal of time researching bone mets and the possibility of a recurrence in my lungs, so I’ve “read up” on those. Looks like I’ve got some work to do to understand the issues with a metastasis in the adrenal gland. I’m up for it.

This post is short because I’m gathering documents and making the calls I need to make to family to let them know what is going on. I will be at the drum circle on Friday night beating my drum like there’s no tomorrow. If you want to stop by, there will be plenty of stuff to beat, shake or otherwise get you into the groove. Please continue thinking of us in your prayers, as well as all the others who are dealing with this damn disease.

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.

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…

 

To Hell and Back

First of all, let me say at the top of this post that with the passing of T. Sam Rawls, the sun will have to work harder to light this world. The loss of Sam’s bright light of goodness, wit and character will create a sense of community sadness that will be hard to get past. Jacquie, Jill and I are holding you in our hearts and praying for your peace and comfort in the loss of your loving mate and one of this community’s best friends.

I have been pretty quiet for the past few days because I feel like I’ve been to hell and back and just haven’t felt like communicating. Despite Jill’s most glorious-to-date warrior bride caregiver performance, visits from my sweet mom and having my fabulous Uncle Johnny and Aunt Nelda here to help keep an eye on me, I have been one miserable SOB.

In addition to large-scale pain mostly from the very long incision on my right side, the addition of a new medication has left me completely unable to sleep. The first two nights on the medication I was only able to get about three hours of sleep and I’ve been so exhausted. Dr. Pippas counseled with me and suggested we add a short-term SSRI (selective serotonin reuptake inhibitor), to help me keep my mind more calm and release some of the pressure cooker anxiety of feeling like something major is about to happen with this cancer, but not knowing exactly what or when it was coming.

We chose a small dose of Celexa. It is to be taken at night and requires a few days or even weeks to fully work. I’m three days in now and after a couple of really horrible completely sleepless nights, I’m beginning to get my legs back under me. I have a feeling this medication is going to be very helpful for me, as I am a fidgety, compulsive dude. Everyone who knows me knows that. I’m hoping for a more calm mind, because we’ve got to make some tough decisions ahead. I want to be clear-headed and razor-sharp when it comes time to pull the trigger.

The thing that cancer patients most hate to see happen, happened to me this morning. I got up to make a pot of coffee and checked my Blackberry. The light was blinking and I could see there had been a voicemail from the phone number that belongs to the John B. Amos Cancer Center.

I wonder if cancer docs really know the instant fear and dread that the mere sight of that phone message light can cause in those of us who are living with cancer. Even if I finally get to beat this thing down for good, I will still quake at the sight of a message from 706-320-8700.

Dr. Pippas wants me to heal from the lumbar spine surgery and his call was simply to let me know that he hasn’t been able to get in contact with Dr. Dan George at Duke to schedule a consultation. So, our Thursday afternoon appointment with Dr. Pippas has been postponed, either until I’ve recovered from my surgery or he’s been able to get in touch with Dr. George and it is time to start making plans.

I’m thankful for my surgeons, Dr. Mike Gorum and Dr. Mac Molnar, who assisted with the thoracic part of the procedure and Dr. Pippas. I hope I’m exactly where I need to be, two weeks after a surgery like this and that I’ll continue to improved and be able to be strong for whatever comes.