Columbus and the Valley

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…

 

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.

A Cause For Celebration

After several days of scanxiety in advance of my Tuesday of this week MRI and CT scans, I have been given the results. I had an 11 a.m. appointment with Dr. Andy Pippas this morning and this is how it went: I got checked in, paid my office co-pay, donated a couple of vials of blood and settled in to wait to see the doctor. The waiting room was uncrowded and quiet today, so it didn’t take long to get in.

They called us back and we were escorted to a treatment room. When Dr. P came in, he greeted us and sat down to review my chart. Based on what happened the last time I saw him, the fact that he stayed on his side of the room and didn’t roll his chair over so that he could take hold of my hand was a good sign. He started reading and commented along the way. “The tumor site in your spine is unchanged. Your chest, lungs, abdomen and pelvis are clear. Mumble, mumble, snarky, lake, cityscape, beemer, hot dog, silver coin, hopscotch, pink elephant…..Mike, you are NED,” you get the point — I had checked out because I had heard all I needed to…..DID YOU SAY, NED?

Yes, he said it. No Evidence of Disease. And he continued: “Mike, the biology of your disease doesn’t seem to be agressive. You went 18 months until there was a recurrence and it was only a single site. Your creatinine level is great and everything is looking good. Spend some time getting back into shape. Work on the parts of your life that you can control.” We are so thrilled to hear this news!

On March 19 I am the honoree for the 2011 American Cancer Society Crystal Ball, presented by the Columbus Regional John B. Amos Cancer Center. I would greatly appreciate it if you would either make a donation to the ACS, buy a ticket to the ball, buy a ticket to the Fire and Ice after party or become a sponsor of the event. Here’s how you can do it: http://www.acscrystalball.org

This is really not about me. I have a great health insurance policy, an assertive personality and great medical connections. This ball and the money it will raise is about all the folks who don’t have this kind of access. I’m just the guy they picked to carry the flag this year. We’d love to have a huge fund raising year, and honestly we’re not there yet. Last minute checks, credit card donations or sponsorships would be so much appreciated. If you’re on the fence about supporting the Crystal Ball, I’m hoping this will convince you that you’re really needed this year.

And, if you decide to come out for the party, we’ve got a hell of lot of good stuff to celebrate after the news I just got today. So, y’all come!

Please Join us at the 2011 ACS Crystal Ball

Times are tough, but I hope we’re coming out of the Great Recession and that folks are beginning to be able to breathe again. I know a thing or two about tough times. The past couple of years have been character builders for me and my family. What a horribly bad time for Jill and me to be partners in a small publishing business! Then there’s that cancer thing — the thing I wouldn’t wish on my worst enemy. Actually, cancer is my worst enemy. So, I guess I would wish cancer on my worst enemy. Cancer, I hope you get cancer!

So, let’s talk about cancer. Take a look around you. Cancer is everywhere. It is as simple as that. It is partially a function of my age, but also of the time in which we live. Every gathering, every party, almost every conversation is partially taken up with a discussion of who has been recently diagnosed with, died from or licked cancer. Our cancer centers are full of sad patients and their sad caregivers. What can we possibly do to turn this death ship around?

One thing that we can all do is support organizations like the American Cancer Society. The ACS is a massive support machine for people like me and others who are living with cancer. I have been chosen as this year’s honoree for the American Cancer Society Crystal Ball. The ball, which is presented by the Columbus Regional Healthcare System’s John B. Amos Cancer Center, takes place on Saturday, March 19 at the RiverMill Event Center.

It is going to be a hell of a party! Drinks, dinner, dancing and a great silent auction, and the evening will be topped off with a Fire and Ice after party, catering to a younger professional set. I set a goal early on in the process to make this year’s Crystal Ball the biggest one yet, but the economy has made the fund-raising a challenge.

Please look at your budgets and find a way to help us fight this disease. Your sponsorships, table reservations, silent auction purchases and contributions will go a long way to keep the help and information flowing to families who need the support of the ACS. Check out http://www.acscrystalball.org, the website for this year’s event and plan on coming out on March 19 to celebrate a successful fund-raising campaign.