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.

 

Time to Grab the Go Bag

I’ve been quiet here since August. I know you’ve noticed.

I need to talk and I hope you’ll listen.

We’re at the end of another holiday season “they” said I wouldn’t get, another birthday just passed they said I’d never see. These moments would have knocked me down when I was a cancer boy. When I toddled through the early days — a wobbly-legged cancer foal — one of these big, important days would come around and I’d fairly spend the day all weepy, with a mind that just wouldn’t stand up on its own. I drew such incredible strength then, as I do today, from Jill’s touch, from the ever-present and ever-strong cloud of witnesses who have walked with us every step of the way. As I look at my reflection today, I am strong in ways and in places where I didn’t even know I had a place.

Strength is good. Especially now.

When cancer comes for you, you have to grab everything you can carry, throw on some clothes and snatch your go bag off the table as you fly out the door. You’ve gotta be light on your feet. Being a cancer patient is a full-time job. It requires study. Although I understand that some patients don’t want to have an opinion about their condition or care, it is my deep conviction that only a fool would relegate 100% of the responsibility for their condition and care to any single other person, even a well-trained doctor. To have a shot at surviving, a patient must be proficient in math, be a good negotiator, be organized and be able to speak insurance. You also need a patient, loving mate and a faith family.

What you need more than anything else is a keen sense of your own body, a strong curiosity about science and medicine and a snarling — almost rabid — ferocity to live.

I recently lost a friend who possessed every one of the qualities of a stellar cancer patient, but who still lost her fight. To know that you can be in the game, in as good shape as possible, rested, nourished, aware and yet still have something unforeseen take you down, that, ladies and gentlemen is a solid testimony for living every day like you are dying.

We leave in a few days on another medical vacation because I’m one of the lucky ones. One of the very lucky few kidney cancer patients who has cobbled together a way to “live” with it. In a recent visit with Dr. Andy Pippas, we talked about all the decisions we’ve made together. About how hard some of them were, and about how fortunate we’ve been to have made mostly the right calls over this almost nine years of living with cancer.

I have an astonishing network. Astonishing because of the wonder, through social media and new technology, of having so many robust relationships with people who I have never met face to face. The physician Jill and I are going out to M. D. Anderson Cancer Center to meet was chosen for our case by an angel doctor who took an interest in us. Professor Dr. Michael Staehler has never met me, yet he’s reviewed my entire medical history with RCC and has discussed my case with with Dr. Lawrence Rhines at M. D. Anderson Cancer Center. Dr. Staehler runs one of the world’s premiere kidney cancer clinics in Munich, Germany and he took an interest in my case because one of our kidney cancer mentors asked him to help us.

We are hopeful that Cabometyx has shrunk the tumor in my spine enough to allow a skilled neurosurgical team to remove the tumor and repair the damage caused by kidney cancer. It is my most prayerful hope that we’ll get this kind of feedback from Dr. Rhines, after he has a chance to meet me, and review whatever tests he feels he needs to make an educated diagnosis of the situation.

If you’ve been a follower of this blog, you know that in times of trouble I write to help get myself through it. So, with trouble ahead they’ll likely be a few thousand words to go along with it. I ask that you also continue to pray for all of your friends, and not just those of us with a dangerous illness. Part of the reason I write is to give folks a glimpse of what it is like to have to negotiate the dark waters of a cancer diagnosis. I hope that you’ve also been able to see the beauty that lies in the clear fact that if you’re open to love and a connection with your fellow life travelers, almost indescribable joy usually follows the pain. I’ve found that when I focus too much on the pain, the joy passes me by.

I have an MRI scan scheduled for 6:15 p.m. CST on Wednesday and we meet with Dr. Rhines on 1/11 at 11 a.m. Depending on what we hear, we’ll at least have a solid idea about how effectively I’m responding to Cabo and whether we’re still on a good track to mitigate this issues in my spine.

One of the attributes of a good cancer patient is a chameleon-like ability to remake yourself each time your physical being forces you to become something different. I am unable to do anything physical right now, so I have spent the past eight months learning how to trade stock options.

I have found a local teacher, someone who has taught me how to read stock charts, about the Fibonacci sequence and how it relates to stock price fluctuations, about how to establish my own trading rules and follow them and how to utilize the stocks that Jill and I already have in our Roth and traditional IRAs to, with relatively low risk buy and sell puts and calls to make additional income as we near retirement.

I’m not going to say much more about stock options right now but trust me, there is much, much more coming from me on this topic. There is a limit on how much of your assets you can place into your Individual Retirement Account each year. But there is no limit on how much you can earn on the money you’ve put there. I have found a better way to grow that money in our lives. And, because only a tiny percentage of the people I’ve engaged in conversation about this subject during the past eight months knew anything about it, I’m going to make it my mission over the near future to make sure everyone within the sound of my voice and who is interested, gets a good, solid education on what surely must be one of the financial world’s most closely-guarded skill sets.

If you think you’re going to be interested in hearing more about how to trade stock options to generate additional income go ahead and pick up a copy of the book, “Understanding Options,” by Michael Sincere and read it. I was asked to read the book before I attended a two-day weekend training class here in Columbus to learn the basics of options trading. Prepare to be challenged, and intellectually stimulated!

 

 

Life, As I Know It, Is About To Change

When you have a relatively rare disease, the size of your network is of the utmost importance. Renal cell carcinoma is a rare cancer and a top medical oncologist in a community clinic setting like we have here in Columbus might see less than 10 cases of RCC per year. I just hung up from a 20-minute telephone conversation with Dr. Michael Kaehler, an RCC specialist in Munich, Germany who sees over a thousand cases of RCC every year. Dena Battle, president of KCCure, a recently launched national kidney cancer foundation with a goal of promoting research and patient care for those of us with this disease, was able to get Dr. Kaehler to convene a group of neurosurgeons and radiation oncologists in Munich to review my case.

My phone conversation with him this morning was both exciting and terrifying. The most terrifying thing I learned is that this tumor is considerably larger than we had thought. At over 10 centimeters in length, it spans my spine at L1-L3 and it is growing around my spinal nerves. More toward the exciting end of the informational spectrum is finding out that although my back is literally against the wall, there is hope for me. He sees a combination of surgery and Cyberknife (radiation) that can be brought to bear to keep the tumor in check and keep my “tumor burden” in a manageable state over time.

The first order of business for me is that I have to begin taking another TKI (tyrosine kinase inhibitor) drug (oral chemotherapy). I was a strong responder to Votrient, the drug that turned my hair white and caused me to lose 100 pounds, but it also shrunk the tumors in my spine and in my adrenal gland. IF (and this is a big if) Cabozantinib, the new drug I’ll be taking shrinks my spinal tumor, we’ll attempt to keep it at bay by using a combination of surgery and Cyberknife to keep it in check. At some point, if the tumor continues to encroach upon my spinal nerves, then I’ll have to have a surgery called a dorsal vertebrectomy to give my spinal nerves more room through my spinal canal.

Knowing what I know about what life is like while taking a TKI drug, I’m going to eat everything that I love over the next few days, because once the drug takes hold of me, my tongue will be turned into a one-trick pony and will only taste aluminum. Everything from my heavenly lasagne to a big juicy medium rare steak will only have one taste — aluminum. I will be nauseated and will experience diarrhea on a daily basis and it will take every bit of restraint I have to be fun to be around. That is my goal, however, because I believe that my attitude has contributed mightily to the fact that I’m still alive. Attitude, along with a loving God, loyal friends, an incredible family and a mountain of prayers.

The rest of my life, however long it turns out to be, will be a study in divine intervention, medical science and perseverance. The only part of this I can control is the perseverance, and making sure I am able to be seen by doctors who know my condition and have the mad skills to attempt to defeat it, regardless of where in the world we have to go to see them. I don’t know how we’ll afford all of this. We have great insurance, but insurance doesn’t cover trips to Germany, if we end up having to go there. We’ve made it this far, with our small business resources and faith. I don’t expect that to change going forward.