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…

 

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.

 

It is Time to Fly

We have our first appointment with a renal cell cancer specialist on December 30 at noon. Dr. Janice Dutcher is at Roosevelt Hospital on 10th Avenue in New York City. Here’s some info on her: http://www.docnet.org/physicians/phys_bios.aspx?phys_id=12541

I have known of her since my diagnosis, because of her incredible reputation among the couple of thousand kidney cancer patients with whom I correspond daily on acor.org. She is one the world’s authorities on the high-dose interleukin-2 (HDIL-2) treatment that I will likely take as a next line of therapy. I have exhausted my possibilities with radiation therapy at the offending spot in my spine. According to Dr. John Cabelka, my radiation oncologist, when disease progression is proven in a spot in the spine that has previously been treated twice with radiosurgery, there can be no more radiation treatments applied in that are.

Dr. Pippas has told me that any further surgeries to my spine will likely end in my paralysis. I’ve asked Dr. Gorum about this, but I haven’t heard his emphatic opinion yet. Whatever his response, it is becoming much more critical that this tumor be stopped. Systemic therapy is the next best path for me. And the sooner, the better.

Jill and I are flying to New York City on December 30 for a consultation with Dr. Dutcher. The big determining factors about HDIL-2 is whether I’m fit enough to weather the treatment. Dr. Pippas thinks that I will be able to take it on. My guess, is that if Dr. Dutcher blesses this therapy for me, we’ll likely have it administered at Duke University Hospital with Dr. Dan George, whom Dr. Pippas knows well. In fact, Dr. Pippas has consulted with Dr. George throughout the time he has treated my RCC.

So, the journey continues. We are hopeful that HDIL-2 is exactly what I need at this moment. My prayer is to be among those in the small percentage who are cured by HDIL-2. I intend to bring it when the time comes. Although, I will be completely out of it most of the time, I know Jill will be by my side and watching over me. She is an indescribably perfect mate. And when I’m sick and down, she turns into some kind of warrior monster. I’ve seen it happen. She is the mother lion whose family you had better not f&#k with.

I’m completely terrified of this next treatment. I’m seeking the advice of the best doctors in the world and their nurses, techs and staffers will also be world-class. I’m so thankful that Jill will be beside me. I’m guessing that the actual treatments will begin early in January. We’ll know more when we talk to Dr. Dutcher and Dr. George.

In this Christmas/Hanukkah season, Jill and I and our children and families want you all to know how much we appreciate all your love and kindnesses while we battle this cancer. I have chosen to open my life to the readers of this blog. It is apparent that everyone within the sound of my voice is going to have to deal with cancer. Either in person or within their family or circle of close friends. I don’t wish this on anyone, but if my words bring solace, strength or a sense of direction for a single person, then all of the effort I’ve taken to communicate my feelings will be worth it.

It Took a Village (Repost)

FYI: This is a repost of my last blog post that many of you didn’t get a chance to read before our hosting company (justhost.com) dropped the ball and left our website inaccessible. They have also said they don’t have a backup after Nov. 23, which means my last two posts have disappeared into nowhere, along with all the great comments we’ve received from many of you. Starting on Monday, we’ll be looking for another hosting company. Here is my latest post:

Oncologists, neurosurgeons, radiation oncologists, family doctors, nephrologists, nurses, techs, physicists, engineers, pharmacists, insurance companies, church family, immediate and extended family and a hoard of friends numbered seemingly like the sands on the seashore — individually, in prayer groups, on renal cell internet forums and on the street. This is my village.

As just a sneak peak at what I have to tell you tonight, I messaged Dr. Mike Gorum late this afternoon to thank him for his good work (good work, that in concert with his partner Dr. Marc Goldman, likely kept me from writing this message in a wheelchair instead of my comfortable leather chair). He said the most un-brain-surgeon-like thing: “You don’t need to thank me, you need to thank a bunch of physicists, engineers and other doctors that work behind this scenes. I just stand out there and take all the credit.”

After the rather curt dismissal we received when we went for follow up at Emory University Hospital in late summer, we began to assemble our village here in Columbus. Drs. Andy Pippas, Mike Gorum, Marc Goldman, Clark Gillett, John Cabelka, Doug Ciuba, Raj Alappan and a host of their PAs, nurses, techs, engineers, physicists, pharmacists and all the advice and drugs they rendered and prescribed. Also, the John B. Amos Cancer Center, The Medical Center, Hughston Hospital and Atlanta Falcons Physical Therapy.

My love fest with our village started from the moment I announced that I had been diagnosed with kidney cancer. It crescendoed on March 19 of this year at the American Cancer Society’s Crystal Ball, where I was this year’s honoree. That was one of the greatest nights of my life. It was very much like being able to attend your own funeral while you are still alive (minus the DJ, band, silent auction, liquor and dancing).

Having cancer sucks, but getting the drop-to-your-knees-and-cry benefit of learning how much you’re loved by your community is a gift that will keep giving until I draw my very last breath. It has been life-changing for me and my family. If you don’t already know how much I love all of you and how much we appreciate each gesture of concern and encouragement, let me be very clear. Our village has healed us, sustained us, fed us — physically and spiritually — cried with us and shouted for joy with us and this has been what has sustained us through dark hours of pain, fear and suffering.

I spent all day yesterday at the JBACC getting fluids. Went back this morning at 7:30 and they stuck another needle in my right arm and kept on pumping. We reported to The Medical Center a little after 10, where they checked my creatinine (1.8, not great, but not bad enough to keep them from using contrast media to enhance the scan), fed me another cup of delicious barium and slid me onto the CT scanner table.

Then it was back to JBACC for an after-scan flush of another bag of fluids to protect Strainer (in case you don’t know, Strainer is the name of my right, remaining kidney). I texted Dr. Pippas’ nurse to let her know that I was in the cancer center, and that it sure would be nice to be able to get some feedback from Dr. P about my scan.

She texted me back and basically said, “Come on down.” Only, it was really up….to the 3rd floor where the team of top-notch medical oncologists ply their profession. So, Jill and I headed on up, signed in, got triaged and settled in to get this very important call to come in to see the doctor.

We were called and made our way back to a treatment room to wait to see Dr. Pippas. After a few minutes, I could hear him dragging my rather voluminous chart out of the door pocket and could see the door handle turning, signaling the imminent delivery of the news we’ve been to anxious to hear.

After a few formalities and the typical barrage of questions from my favorite mad scientist, he opened the three-inch-thick folder and drew out two sheets of paper that represented the salient facts gleaned from the scan that I had had only a few hours earlier.

“This scan is completely clear. There are no metastases in your lungs, abdomen or pelvic area,” was how Dr. Pippas characterized the information. Hallelujah! This is going to be a great Christmas.

In my yesterday post, I outlined two possible outcomes of this scan. This was the one we were hoping and praying for. No Evidence of Disease. NOW, the wolf is still at the door. We will have another MRI scan in about two weeks to determine once and for all that the stereotactic radiosurgery has effectively killed the tumor in my spine.

The MRI could also see if there are any other small soft tissue tumors in that general area. The bottom line is that we (our medical village) still thinks we need to pursue some type of systemic therapy to go after any other cancer cells that might be floating around inside of my body.

Today I heard from a representative from Dr. Janice Dutcher’s office in New York. I have already heard from Dr. Dan George at Duke. After we get the MRI results in mid-December and correspond with those two docs via email and/or phone, we’ll know whether the HDIL-2 systemic therapy is feasible and if so, will schedule it either in New York or at Duke. For all sorts of reasons, I am adamant, and Dr. Pippas agrees that I am not going to settle for any kind of tyrosine kinase inhibitor (read it and weep: http://www.ncbi.nlm.nih.gov/pubmed/19689244) before I know without any doubt that HDIL-2 therapy is completely off the table for me.

So we press on. Happy for the gift of this news so that we can brush cancer aside and enjoy this advent season, watchful, hopeful with the scent of Fraser fir (named for the Scottish botanist John Fraser) in our nostrils.

I am not cured. The chances are high that this cancer will come back. We will remain vigilant, hopeful and keep a fresh can of whupass handy if we need it. For now, we are blissful! I can concentrate on getting back the strength I’ve lost and try to figure out how to properly thank my village for standing by us for the past two and a half years. This time has changed me.

I didn’t intend for this to be a thousand-word post. In fact, when I finish this sentence, it is at 1,104 words. I will shut up, now.

Goodnight!