Columbus and the Valley

Cancer Treatment Enters New Phase

I-10 is no picnic. Especially with miles and miles of construction, steady rain, cold temps, fog and dim-witted drivers who somehow still don’t know that if people would just use the left lane to pass and then get back over to the right, everyone would be able to travel at their preferred speed and no one would be held up. I am an assertive, patient highway driver, but I swear to God, if I had a rocket launcher on the front of my Lexus, I would have initiated several launch sequences to take out left laners during our recent trip across half the country to Houston’s M. D. Anderson Cancer Center.

We have officially entered into a new phase of my eight-and-a-half-year dustup with kidney cancer. Let me catch you up on my treatment timeline and then I’ll tell you what we heard out in Houston.

June 11, 2009 Radical left nephrectomy + 12 lymph nodes
August, 2009 Started ASSURE clinical trial
September, 2010 Discovered 2 centimeter tumor in spine at L2, unblinded from trial
October, 2010 Biopsy shows tumor is renal cell cancer metastasis
December, 2010 Stereotactic radiosurgery of spine at Emory University Hospital
August, 2011 Spinal tumor not dead and growing again
August 19, 2011 Lumbar fusion surgery at L1-L3 at Midtown Medical in Columbus
October 8, 2011 Emergency lumbar laminectomy surgery at Midtown Medical
October 20, 2011 Stereotactic radiosurgery at John B. Amos Cancer Center
October 26, 2011 Started monthly Xgeva injections to strengthen spinal bones
June 21, 2012 Discovered 3.9cm tumor on left adrenal gland
July, 2012 13-day trip to M. D. Anderson Cancer Center for evaluation
• Brain MRI, bone scan, chest x-ray, CT scans of chest, abdomen and pelvis, biopsy of adrenal tumor confirms RCC
September 3, 2012 Started High-Dose Interleukin 2 therapy at Duke University
Hospital
September 8, 2012 Washed out of HD-IL2 therapy, due to creatinine spike
November 13, 2012 Started taking 800mg daily dose of Votrient
July, 2013 Scans show 90% reduction in adrenal tumor, have lost 80 pounds
January 14, 2014 Have lost 100 pounds, liver toxicity, have to stop Votrient
July 22, 2014 CT scan shows left adrenal tumor growing again
August 28, 2014 Microwave ablation of adrenal tumor with complications due to
300/200 blood pressure spike during procedure
September 4, 2014 Saw cardiologist in Columbus to confirm no heart damage
March 6, 2017 CT of chest, abdomen and pelvis discovered spinal met is growing
again
April 6, 2017 Started taking 60mg daily dose of Cabometyx which is shrinking tumor
June 1, 2017 Had first phone discussion with Prof. Dr. Michael Staehler, an RCC
specialist in Munich, Germany
January 9, 2018 Traveled to M. D. Anderson Cancer Center to meet with Dr. Larry Rhines, neurosurgeon.

Several months ago we were introduced to Prof. Dr. Michael Staehler, one of the top kidney cancer specialists in Europe through Dena Battle, president of KCCure, a national kidney cancer research foundation. If you’ve been a regular reader of my blog, you know that our lives have intersected with Dena’s throughout our eight-and-a-half year war with RCC. Dena connected us with her colleague, Dr. Staehler and he has been on a mission to assist us (without compensation or any kind of formal arrangement) in finding the right neurosurgeon with whom to consult. He settled upon Dr. Rhines and we went to see him last week after completing another MRI of my lumbar spine out in Houston.

Dr. Staehler has been incredibly responsive to our situation by hand picking Dr. Rhines, visiting with him on a recent trip from Munich to Houston and even reviewing over eight years worth of scans from my case file! Dr. Rhines only found out during our initial discussion that Dr. Staehler had never met us and that I am not officially his patient. He was blown away and commented that he’d never quite seen anything like that — a doctor of Dr. Staehler’s stature taking such a keen interest in the case of someone whom he had never even met. I’m sad that we missed seeing Dr. Staehler by only a few hours in Houston. I hope we can make that meeting happen sometime soon.

Dr. Staehler has shared my scans with colleagues of his in Munich and collectively, they felt we have a chance to surgically remove this tumor from my spine and possibly change the direction of this cancer with a “curative” surgery. I used the quotes because kidney cancer is an incurable disease today. This monster surgery would only cure me to the extent that it might render me NED (No Evidence of Disease) without scans seeing any evidence of disease outside of this area of my spine. My job is to try to stay alive long enough for something that could cure me to be developed. Your contributions to KCCure might help with this.

Dr. Rhines realized early in our initial meeting that Jill and I are well-educated as patient and caregiver, so he didn’t mince his words. He spoke in shocking word pictures of the risk, complexity and totality of an en bloc spondylectomy surgery. He described in vivid detail that this surgery would be disfiguring and would likely leave me even more profoundly physically limited than I am today. Dr. Rhines explained that these huge surgeries have been done to a greater degree in Europe because countries in Europe have lagged behind the United States in radiation oncology and drug therapy. So, they did these large surgeries because that was the only hope of keeping people alive in the absence of less-invasive curative radiation and drug therapy.

The en bloc spondylectomy would include the harvesting of bone from one of my legs for use in aiding my spine to heal from the surgery. This video link is of Dr. Rhines performing the operation. He told us that most of these procedures in the United States are done on patients with primary bone tumors, not on people like me with metastatic disease in the bone from another primary tumor site. Here’s why: If you recall from my timeline above, in addition to the initial nephrectomy, I’ve had two large spine surgeries and two 16-gray rounds of stereotactic radiosurgery and the microwave ablation adrenalectomy. There will be significant scarring and structural turmoil inside me from all that activity over the past nine years of being treated for cancer. Dr. Rhines described the extreme challenges standing in the way of us getting a perfect outcome from a surgery like this. He told us frankly that he would rather find other options for us that would be less invasive and dangerous. Since it has been many years since I had any radiation to my spine, that might be able to to happen. There is also immunotherapy that we haven’t tried.

Where does that leave us? Dr. Mike Gorum’s initial 2012 spine surgery continues to be structurally sound, in spite of the sad fact that the formerly solid bone where one of the titanium screws Mike installed is screwed into what is now, new tumor tissue. With the en bloc spondylectomy being such a difficult procedure in light of scarring from the former surgical activity and radiation, Dr. Rhines thinks we should consult with a new M. D. Anderson team to augment my local care. Jill and I agree that if I’m going to have a chance at any kind of normal life, we have to pull out all the stops and cover every possible angle to find the right procedures and the right people and technology to deliver them.

Dr. Andy Pippas continues to encourage us to explore our vast kidney cancer network to try to find exactly the right procedures, drug therapies and specialists to keep ahead of this disease. Andy will continue to quarterback this growing team of medical professionals going forward. We have an initial meeting with renowned kidney cancer medical oncologist, Dr. Eric Jonasch, at M. D. Anderson Cancer Center on Monday, February 5 and will likely be referred to radiation oncologist, Dr. Amol Ghia, to see if additional radiation could be used to knock down this tumor.

I really liked the way Dr. Rhines described what needs to happen going forward. He discussed our consulting with these new specialists in concert with the addition of regular MRIs so that we can monitor our thankfully stable current situation for microscopic changes. If those changes come, and we see the tumor beginning to grow again, in his words, “We’ll see who’s up.” If it is radiation, then Dr. Ghia will run with the ball, or if it is drug related, then Drs. Pippas and Jonasch will be up. If it is neurosurgery, then Dr. Rhines would take it.

At the very least, we’ll come out of this recent skirmish with a solid plan. I speak from experience, that cancer patients like it when they can see a plan. It adds a level of direction to the usual chaos of living with cancer. Despite my increasingly limiting physical condition, my mind is on fire with possibilities and my medical dream team continues to pull rabbits out of hats to keep us ahead of this disease. We left Houston tired, but encouraged that we still have dry powder for future firefights.

We continue to be thankful for the John B. Amos Cancer Center and with this latest trip out to M. D. Anderson, I am more sure than ever that it is imperative for everyone with a spare nickel to give it to the Columbus Regional Health Foundation’s efforts which are underway to renovate and update our wonderful local cancer center. Click on the link and use the drop down menu to designate your gift to the John B. Amos Cancer Center.

Because of the nature of kidney cancer and its difficulty to treat, I’m committed to continuing to write extensively about our efforts to survive and live with this disease. This disease is one of the ones that demands the patient to pay attention and be educated on their condition. I’m trying to do my part to help others with that. These posts are long, technical and can be pretty boring for the rest of you. For a patient, a post like this can really help them see what is ahead and how to attack that scary future. Being smart and responsive can go a long way toward assuring that patient even gets the chance to have a future.

Jill and I appreciate the support we’ve received from our family, friends and our life network. We feel your presence in our lives every day, especially when we are in the trenches dealing with something new like we are now. I am spending a good bit of time doing research, scheduling doctor visits and procedures and overseeing plans to update our home to accommodate our changing needs, so please be patient with me if you feel like I haven’t responded quickly enough to your inquiry. I started this blog as my main line of communication and when things are swirling, something like this is the only sane way for me to try to stay in touch with the beautiful people who are interested in my wellbeing.

 

My Flesh and Blood Plays Red Rocks Tonight

The surely epic bucket list item I won’t get the chance to check off today has finally lost enough pain for me to talk about it. Tonight I would have stood on hallowed concert ground in Morrison, CO with all four of our sons and Michael’s wife, Janice Rice Venable, one of my dearest childhood friends, Craig Hospital Occupational Therapist Perry Ann Williams, and her husband retired landscape architect, Keith Gartin; Principal Architect and Senior Partner Sam Andras, of 2WR Architects, his spouse, educator Victoria Andras, and a host of their friends, band mates, lighting and sound professionals and advisors.

Today we all would have watched our son, Adam Venable/Obeah, perform with Daily Bread as they open for Pretty Lights on the Red Rocks stage. If you know about Red Rocks, you can likely conjure my deep loss for having to miss it tonight. If you don’t know Red Rocks, think Carnegie Hall and and I’ll conjure my deep loss for having to miss this tonight. I’ve had to unwind a 12-day walkabout while in the midst of enduring 2 surgeries, a CT scan, an MRI, some sweet Jesus pain and chronic nausea and vomiting. Thanks to my medical team, everything on that list has been fixed or alleviated. But without time on my side and the sensibility of putting the importance of my health first, tonight, my best hope is to be able to live stream the show, if they can figure how to send it.

Adam, I hope you leave a raw, bloody piece of your soul on that important stage tonight. That it comes from a place so deep that it shocks people to know you kept things like that in there. You have worked hard for this and you deserve your hard work and dedication to make an audience swoon. I will be joined with your spirit in the Colorado breeze. I could not possibly be prouder of you, son, and your brothers and that sold out show will watch the virtual walls come down in the foothills tonight. Now go out there and kill!

 

Tales from the Food Desert

I am a seasoned cancer patient. Something I never wanted to be. I am able to withstand painful needle sticks without fear. Something I never wanted to be able to do. I am engaged in a fight to live and to enjoy a robust life. Something I never wanted to have to deal with.

I feel the urge to talk about what I’m feeling today. I’m not phishing for pity, just telling it like it is. Sometimes it helps me in a big way to see a real account of the incredible privilege it is to be able to live with cancer, as opposed to it taking you down quickly. Without any doubt, the pain and suffering with which I, and therefore my family and friends, deal with because of this disease and the powerful medications I take, the gift of living that I’ve been afforded is a great victory.

So, let’s talk about positives: If you’re following, you know I had a CT with contrast of chest, abdomen and pelvis yesterday. The radiologist read the scan and so did Dr. Andrew Pippas. They read the scan. I read the report. We are all a bit flummoxed about this disease process. So, Dr. Pippas has ordered a PET CT, which is a nuclear scan to detect active disease. That should give my medical team enough additional information to be able to make recommendations about future treatment.

I’ll have the PET CT this Friday, May 26 at 1:45. What we hope to see is that the areas where we have concerns — my spine from L1-L3 and the spinal canal, and my remaining kidney which has a lesion that we’ve watched for 8 years, are not exhibiting active disease. That place on my remaining kidney is changing, based on the introduction of Cabozantinib, the drug I’ve been taking for about seven weeks. Changing into what, we don’t know at the moment.

I’ll share what we learn from the PET CT over the coming weekend. I hope we’ll have a more definite idea of what is happening and what we’re going to do about it.

My biggest issue in the quality of life department is that I’m hoarse as hell. 20% of the people who take CABO get extreme hoarseness as a side effect. I definitely am one of those 20%. Also, I’m dealing with some hand/foot syndrome. I have blisters on both of my feet and walking is difficult and painful. I’ve lost right at 60 pounds now and eating continues to be challenging. Also, my blood pressure is elevated and we’re concerned about that. High blood pressure is very dangerous to me because I only have the one kidney. This is a tough road we’re on right now.

Having all of my readers with us in spirit along the way has been a wonderful gift to Jill and me. I hope I can keep on track with posts as information becomes available. Thank you for your concerns. Thank you for your prayers. Thank you for your kindnesses. We could not be more grateful for all of you.

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.

Pork Rinds at a Bar Mitzvah?

First of all, a big thank you to the angel who provided flight time for us today. What got accomplished in exactly 11.5 hours would have taken two whole days and more energy and expense than we had to throw at it right here at the holidays.

Despite the great flying accommodations, it was still a very stressful day, and we are exhausted from all the stress and conversation. Roosevelt Hospital is well over 100 years old, located in the Hell’s Kitchen area of lower Manhattan on 10th Avenue at 55th Street in New York City. Funny story: Our cab fare from the airport to the hospital was $102. The return trip cost us $56. Go figure! Guess which trip was made in a yellow car? By the way, it was a 20-minute drive. I’m in the wrong business!

I had completed all my new patient paperwork and sent them to Dr. Dutcher’s office a couple of weeks ago, so the check-in process was a breeze. The people we encountered at Roosevelt were extremely nice and helpful. When we got off the elevator on the 11th floor, we must have looked like a package of pork rinds at a bar mitzvah. A guy walked up to us wearing a welcoming smile and with his arms extended out to his sides, palms facing us, said, “Baby, or cancer?” Both the maternity stuff and the oncology stuff are on the 11th floor. As we approached the check-in office for Dr. Dutcher, we ran into the same smiling guy who engaged us in another upbeat exchange of words. He was such a great ambassador for the hospital. He seemed to enjoy his work and honestly, I don’t know what his job is, beyond making Alabama people feel comfortable in a strange place.

Before I get to what you really want to hear, I want to tell you another story about the elevators. There is a “Sabbath Elevator” at Roosevelt. During the sabbath and on Jewish holidays that elevator is programmed to stop at every floor, no matter who is on it or where they’re wanting to get off. I know that strict observers of the Jewish faith can’t turn on lights on sabbaths and holidays. Now, I know they’re also not supposed to press elevator buttons. It is interesting being in a big city surrounded by so many people who are different from you. Interesting and fascinating.

By the way Gayla and Sandy, we were two blocks from the Columbus Circle Mall, which is next door to the Time Warner building. It is three gargantuan floors of every kind of shop, restaurant and boutique you can imagine. I thought of you both when we walked through those revolving doors looking for a place to lunch. I know you two could have done to damage to your Visa cards in that place!

We checked in and while we were sitting there waiting, Dr. Dutcher walked in. I said, “I know that face! Hello Dr. Dutcher.” She said, “You must be Mike.” She only scheduled four appointments today, so it was easy to know them by name. We only waited for about five minutes before we were escorted to a consultation room.

I promised video. I have about an hour of video of our meeting, but I won’t be able to post it until tomorrow. First of all, I don’t know how to post it, and I’m just too tired to fiddle with it tonight. That will give me something to figure out tomorrow.

That reminds me of one of our most cherished family stories, and my son Michael is going to kill me for this. When he was five years old, he came roaring into our great room like a house on fire. I was sitting there watching TV and he ran right up to my recliner and said, “Dad, does your penis get big sometime?”

OMG, this was it, I thought. This is the time when I’m not supposed to lie. I’m supposed to answer the little guy directly. Nothing more, nothing less. Just answer the question. So, I did. “Yes,” I said — hoping that was the end of it — and he’d go on back to, Lord only knows, what he was doing. He didn’t. He continued, “Is it cause you’ve been fiddling with it?”

“No,” I said. What the hell, I wasn’t going to go THERE with a five-year-old. “Okay,” he said and roared back out of the room. I was thinking, “Well, alrighty then, that went better than expected.”

But I digress.

Dr. Dutcher came into the room and Jill and we over the renal cell carcinoma history, all my medications, surgeries and procedures. One at a time, she popped in the two disks I had mailed her containing the images from the recent CT and MRI scans. After much discussion and many questions from her and from us, she has agreed that the HDIL-2 procedure is the next best step for us.

I will outline her protocols in my tomorrow post, but we determined that it really doesn’t make sense for me to have this therapy in New York. Dr. Dutcher is very familiar with Dr. Dan George and Dr. Andy Pippas, my oncologist, is a Duke colleague of Dr. George’s. Duke is the place we need to be. Dr. Dutcher said there were three facilities that she would recommend that are nearer to us. One of them isn’t in Atlanta. So, we’ll be making a drive up to Durham as soon as I can get an appointment and have a talk with Dr. George. If we are satisfied that he will be agressive enough, and if I can pass the physical testing that will be done to assure that I’ll be able to withstand the therapy, we’ll likely do this at Duke University Hospital.

Dr. Dutcher says that about 30% of people respond to the HDIL-2 therapy. Respond means that the tumors in their bodies shrink more than 50%. Seven to ten percent are complete responders. Those are the lucky ones where the disease disappears and stays gone. I want to be a complete responder.

I want to be able to live much, much longer and continue to be able to embarrass my children. Sorry, Michael, you are a beautiful man. You were a beautiful child. And, that was a beautiful story. It just needed to be told.

This was a good day. HDIL-2 is a good option for us. It is one that could cure me. Even with the side effects that we know it will bring, I’m ready to take it on. The sooner, the better.