Columbus and the Valley

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

 

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…