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Thank You, Carlton Motorcars, Inc.

Wednesday of last week was the day we got to go back home from our tiring initial appointments and diagnostic testing at the Duke Clinic in Durham, NC. The plan was to go up there and meet with Dr. Dan George and Dr. Mike Morse to be evaluated for HD-IL2 therapy. We were able to do what we went there to do and was pronounced healthy enough to be able to survive the therapy.

Needle sticks, a stress echo test and some high-anxiety meetings with the doctors made for a couple of tired travelers. We pulled out on Wednesday morning, excited about getting back home to our own bed and to our family and friends. We fired up the car and put it into the wind, thinking we might be heading into some possible rain that hurricane Isaac might be slinging around. The rain didn’t materialize, but something worse sure did.

Jill and I are not into chain restaurants when we’re in a new place. She did some research on the Yelp app on her iPhone and we picked The Bohemian Cafe in Greenville, SC, which is almost exactly half way home. We got to the restaurant at about 2 p.m. for a late lunch. After a great lunch, we shopped for a few minutes in a vintage vinyl record store which is conveniently accessed through the restaurant.

All that was left for us to do before we got back on the road for the last half of the trip was to gas up. Like I said in my last post, just as we were turning into the gas station, a couple of jolts that felt like the transmission was coming apart set me on edge. By then it was about 3 p.m. and I made a phone call to Carlton Motorcars, Inc., Greenville’s Mercedes dealership, which was thankfully only 2.8 miles up Laurens Road from the gas station.

I got David Knutti on the phone in the dealership’s service department. He very professionally gave me a couple of things that I could try that might reset the vehicle’s electrical system and make the problem go away, if it was only an issue that a reset could fix. I told him that we would try those, but that if that failed, we’d be up there to see him.

Sure enough, the quick fixes didn’t work, so we limped up the road, bumping and grinding all the way. Normally my trusty, 8-year-old Mercedes E500 is still so exciting to drive. She is heavy and solid, but is so nimble to the touch. She begs for speed and the faster you go, the more she seems to like it. But, whatever was ailing her made her listless and flat. I was sad about it in a way.

So we rolled into Carlton Motorcars service area, which is in a separate building from the sales end of things. I got out of the car and asked for David. A smart, thin, glasses-wearing man put out his hand to shake and I could see the “it is 3:25 on Wednesday before a holiday weekend and we’ve been slammed” look in his face. I mean, how could he help that? It was true! I filled out some paperwork and he palmed my smartkey and headed over to the car to get what he needed there.

As he got out of the car and turned back my way, the magic started to happen. He had the look of a man who wanted to do something nice for two tired travelers. He escorted us to the nicely appointed, very clean waiting area and offered us snacks and drinks. I eyed the big, stainless steel, high-tech looking coffee machine and walked over to check it out. There were two bean hoppers on top that would, on command, grind either caffeine-free or regular coffee beans. Then, you could select how large a cup you wanted. This is a perfect coffee situation. Since I like my coffee bold, I chose the smaller cup option and hit the button. Less than a minute later, I had a perfect cup of hot coffee. That is a cool machine (I use the word “cool” with permission from Jimmy Elder).

Twenty minutes later, David came back into the waiting area and told us two good things. We found out what was wrong with the car and that they had the part that could provide a fix. Not only did they get us out of there in less than a total of two hours, I got two phone calls on Friday to follow up on their work. One of the calls was from David Knutti. I told good friend, Bill Becker, about the experience that we had a Carlton Motorcars and he did such a Bill Becker kind of thing: He wrote an email to David Knutti and told him that he had served his good friends in a great time of need and the he appreciated how well we were treated.

Usually, when something great like this happens you tell a few friends. I decided to tell a few thousand friends via this blog post, on Facebook and Twitter. That is the kind of customer service that is so hard to find in this online internet world. David, I got the owner’s name from you in order to write her a letter. I decided to handle this in a different way. Please share this blog post with Heather Carlton and tell her you could use a raise in pay. You are a great ambassador for her business.

I’m packing right after I finish this blog post. We’ll be pulling out in the morning for another 8-hour drive to Durham. Some time on Monday afternoon, they’ll insert the picc line in which the drug aldesleukin will be dripped into my heart. Later, at 6 p.m., they’ll turn the switch for the 15-minute infusion of the drug that will likely turn me every which way but loose. Then, every 8 hours they’ll drip in some more until I physically can’t take it anymore. The goal is to take 14 doses, but with my diminished kidney function, it is fairly unlikely that I’ll make that number.

We’ll be in a step-down unit that functions like an intensive care room in terms of the ultra-high level of scrutiny I’ll have. Jill will be allowed to stay with me and unless the rapture happens, she’ll be constantly by my side. One of my best high school friends, Richard Barrett, has told me that he wants to come up to Duke from his home in Greenville and tag out with Jill to give her some respite. You might recall that he did this for us after my drug addled first radiation treatment at Emory back in December of 2010. I still don’t know what I said to him that afternoon.

Needless to say, I wouldn’t just let anyone see me in the sad shape that I’ll be in next week. But I’ve already babbled incoherently to Richard once, so we’ll appreciate his visit one day next week to give Jill a break (if she’ll take it). By the way, other than Richard, I do not want or expect any visitors while we’re going through this treatment. Even though I’m not a particularly vain guy, I will be at my lifelong worst next week, and I really don’t want to be seen as the amorphous, slobbering blob that I’ll likely be.

I just got a call from Sea-Daddy Neal Pope. A sea-daddy is an affectionate term for an older Marine that takes a younger man under his wing to show him the ropes. Despite the glorious performances Neal has delivered in a courtroom, he also knows medical adversity the likes of which are not known by many. Here’s what he told me: “Son, the stadium is full and they just handed you the football. It is all on you now.” Tomorrow, we go. Monday evening is when I and the drugs will be darting through the defending roadblocks caused by the cancer cells that want to bring me down. Your prayers are appreciated as we begin this difficult journey.

I also want to send out a tribute to an old friend, Terry Thomas, who is facing difficult days with melanoma. He has been a warrior for our country and he is facing an enemy he can’t see right now. Please join me and pray for him, too, as well as all the others who are living with cancer.

September 1, 2012 | Tagged With: aldesleukin, Bill Becker, cancer, Carlton Motorcars Inc., David Knutti, Dr. Dan George, Dr. Mike Morse, Duke Clinic, Durham NC, Emory University Hospital, Greenville SC, HD IL2, Hurricane Isaac, Jill Tigner, JImmy Elder, kidney function, Marine, Mercedes, Neal Pope, renal cell cancer, Richard Barrett, sea daddy, Terry Thomas, The Bohemian Cafe| Filed Under: Community, kidney cancer | 11 Comments

Dr. Chris Wood’s Speech

On the right is an excerpt from a speech Dr. Chris Wood delivered at a Kidney Cancer  Association Patient Conference. This is a text excerpt from the last few moments of his speech that specifically deals with my situation, a recurrence in the renal fossa. I’m very encouraged by what I read here and by the remainder of his speech.

He is certainly the gold standard for robotic surgery to aggressively confront metastatic recurrence of renal cell cancer. I have also attached information about him. He is the doctor we’d like to be able to see at M. D. Anderson, along with Genitourinary Medical Oncologist Dr. Eric Jonasch

I am in the process of working with the John B. Amos Cancer Center to collect records to send out to M. D. Anderson Center. We are shooting for an appointment within the next two weeks.

If you’re interested in seeing Dr. Wood’s entire speech here is a link:

http://www.youtube.com/watch?v=Ns7qDbn_0_E&feature=player_embedded&list=PLCD4CBA38CA4AC271#!

Dr. Chris Wood:

http://faculty.mdanderson.org/Christopher_Wood/Default.asp?SNID=1980221595

Dr. Eric Jonasch

http://faculty.mdanderson.org/Eric_Jonasch/

 

June 26, 2012 | Tagged With: Dr. Chris Wood, Dr. Eric Jonasch, John B. Amos Cancer Center, KCA Patient Conference, M. D. Anderson Center, renal cell cancer, renal fossa| Filed Under: kidney cancer | 3 Comments

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…

 

March 22, 2012 | Tagged With: Cindy Ivey, Columbus Regional Healthcare System, Dr. Andrew Pippas, Dr. John Cabelka, Dr. Mac Molnar, Dr. Marc Goldman, Dr. Mike Gorum, John B. Amos Cancer Center, metastsis, MRI, renal cell cancer, Ride on Bikes, St. Francis Hospital, Xgeva| Filed Under: kidney cancer | 47 Comments

Amen and Goodnight

We just got back to the hotel from a long, really nice dinner at Table 16 in Greensboro, NC. It was a date! It was a date! Out of town, a couple in a different town, sharing a bottle of wine and two different fish dishes. A nice ending to an exhausting day.

I’ve decided to talk to God tonight. I don’t mind if you listen in. In fact, I want you to listen in and know what is in the back corner of my heart.

Dear God, we have tried to be all you would have us be since cancer came to visit us almost three years ago. We have helped raise $150,000 for the American Cancer Society and received the incredible gift of feeling the love of our community on one of the greatest nights of my life.

I have peddled a bicycle, worn makeup and posed for pictures and video for billboards, print ads and television commercials for the John B. Amos Cancer Center and Columbus Regional Healthcare System. We have written over 140,000 words, first on our Care Pages and then on this blog so that we can leave a very easily findable trail of crumbs for the kidney cancer patients who are visited by this disease after me.

We have bared our souls, discussed bowel movements, explained our fears and discussed medications, procedures and even videos of me getting shrink wrapped for a stereotactic radiation treatment. There isn’t a single thing that has happened to us that we’ve held back on. It is all out there — the good, the bad and the ugly. Our local doctors, PAs, nurses and techs have not failed us. We have received exceptional care. We left Columbus because it is time to seek care from a renal cell cancer specialist.

We didn’t hear what we came to Duke to hear today. Jill and I are in a “Damn the torpedoes! Full speed ahead” place. Dr. Dan George….not so much. The tumor that was in my spine is gone. The CT scans and MRIs confirm this. We came expecting to be offered high-dose interleukin 2 therapy, a brutal systemic therapy, which could cure me of this cancer. A 7% chance. A chance we were willing to take, in spite of the horrific side effects and stress on my body and on Jill’s soul from having to witness it.

Lord, I don’t like indecision. You know I like to lead, follow or get out of the way. I’m not good at waiting, even though I know that it is not my will, but yours, Lord, that will be done. I’m afraid of this tumor coming back in my spine. I’m afraid of my legs being taken away. Dr. George was emphatic today that HDIL-2 won’t keep this cancer from returning. He says the cancer in my body needs to declare itself. He feels that we need to continue to watch. We’re living in a constant state of cancer advent.

I asked about PET scans, or any other cutting edge scans that might not be available in the Columbus area. Dr. George will call us inside of two weeks to discuss those options, if they exist.

The good work that has been done by our caregivers at home may have healed me. It is entirely possible that this cancer is gone permanently. If you’ll grant me a wish, Lord, I’d really like this to be the case. In the meantime, we’ll continue to wait, and pray from cancer advent. We’ll continue the scans, the hydration and the needle sticks.

I won’t give up on you, if you won’t give up on me.

Oh, one more thing. Please get us back to Alabama safely.

Amen, and goodnight.

January 11, 2012 | Tagged With: Alabama, American Cancer Society, bicycle, Columbus GA, Columbus Regional Healthcare System, CT, Dr. Dan George, Duke University Hospital, God, Greensboro NC, John B. Amos Cancer Center, MRI, PET scan, renal cell cancer, Table 16| Filed Under: kidney cancer | 29 Comments

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!

January 7, 2012 | Tagged With: Callie Sprague, Caribbean, Dr. Andrew Pippas, Dr. Dan George, Duke University Hospital, fishing, golf, HDIl-2, Jill Tigner, Kate Nerone, kayak, renal cell cancer, sock monkey, Stamford CT, Water Island USVI, Xanax| Filed Under: kidney cancer | 27 Comments

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