My last blog post was April 13. I have tried every day since to gracefully accept the measure of health I can wrestle from a disease process that is for now being held at bay…by a pill a day. Those pills cost my insurance company over $500 a day. The math nearly brings me to my knees.
Thankfully, all my systems are within acceptable limits and the tumor in my spine is being kept stable by a daily 60mg dose of Cabometyx. When I run into friends I haven’t seen in a while, there’s a time warp to connect the sixty-five-old me to a fat profile that, when I last sported it, I was walking the halls of Hardaway High School. If you think that’s weird for you, you should feel it from this side.
Know this, Jill and I appreciate the constant love we feel from every channel of our lives. I never dreamed we’d still be at it ten years after my diagnosis. We are grateful for the gifts we’ve been given and for the legions of family and friends with whom we’ve shared our lives.
We had a perfect Christmas this year. The annual Christmas hayride happened for the first time in three years and I hope we made a few memories. Saturday, on the day of our hayride, a crisp, bluebird day was a perfect backdrop for our ride.
We got some good face time with all the boys and their significant others, our parents, siblings, some nieces and nephews and friends during the Christmas holiday. I think Jill and I had a personal best in the holiday decoration category. Unpacked it, put it up, took it down, packed it up. Back in the barn. Bam!
For the past couple of years, we got a unique perspective of the courtship of our son, Christopher, and his main squeeze, Kathryn Anderson, of the California Andersons. Some few months after they met, Kathryn joined our team at “Columbus and the Valley” and got to witness firsthand, a rare glimpse into what makes her tick that most “parents of the partner” would never get the chance to see.
We are thrilled that Kathryn and Christopher are engaged! Here’s what I’m more excited about: I’ve watched our son blossom with Kathryn at his side. She makes him happy and that makes me happy. She is compassionate about her causes, really smart, protective of her pack, competitive and so much fun to be around.
Having the great pleasure of working with Kathryn and getting to know her organically and we enter our new roles in each others’ lives. I could not be more excited about having Kathryn join our family.
That’s all I’ve got for now. That, and this big ol’ smile.
Decisions Get Tougher
Outside the window an agitated crow is taunting me on this rainy Sunday afternoon. He’s telling me to sit down and write. I just left a Norman Rockwell painting in that other bedroom. There in a comfortable chair, connected to wifi, within earshot of an occasional hiss of tires over the wet county road just to the north, Garth and Bernie are both sleeping, one snoring, on the bed behind me. With the only window in that room at the head of the bed and covered by blinds and curtains, my words seem to be begging for the open spaces outside and better visiblity from another part of our home. So I made my way over to our old bedroom on the warm end of the house and sat down at a desk with a diminished view of our recently-trimmed and freshened up front yard through one of several failed, repurposed windows we used during our renovation over 20 years ago.
Looking through that hazed glass, except for that crow and the occasional car out on the road, everything is rainy Sunday afternoon quiet. This Sunday was not a typical one. I preached at church this morning.
And yes, the walls are still standing.
I volunteered for lay reading duty today and rather than sticking with just my preferred Rite One version of Morning Prayer from the Episcopal Book of Common Prayer, I like to steal a sermon (with attribution, of course), usually from Sermons That Work, and tweak it to suit the lessons of the day and our little parish’s world view and deliver it along with Morning Prayer.
A few days ago, Jill sent me a sermon for Epiphany VI (today in the Episcopal Church) by priest and family friend, Dean Taylor, who is interim rector of Church of Our Savior Episcopal Church in Jacksonville, Fla. I hope Dean will approve of my using his work at St. Matthew in-the-Pines Episcopal Church this morning. I can’t speak for our little band of faithful parishioners, but I left our church this morning feeling pretty good about what Dean called my “seat on the Ferris Wheel.”
Basically, if you’re lucky enough to live a long life, you’re going to spend some of your days at the top of the Ferris Wheel and some at the bottom. Some days you’ll be rising from the bottom, you’ll peak and then take another turn to the downside on the way to the bottom, only to rise again another day. That, folks, is inevitable. The challenge in Dean’s sermon came when he encouraged us to keep our humanity as our fortunes change — to be faithful to our core values both in times of prosperity and in times of great loss. It is important to me, important enough to warrant a significant amount of my time and energy, to try to be an accessible, loving, compassionate, engaged, enthusiastic, grounded man, in spite of the increasing list of physical and emotional limitations with which I have to live.
If you know anything at all about me, sometimes you have to listen to a story to get at some information you’re looking to get. Everywhere I go people encourage me to keep documenting my experiences with cancer. I can’t write as frequently as I once did for some reason. So, when I can coax myself to sit down and lay down some words I have a few things to say. If you’re put off by my verbosity, I get it, but I can’t help it.
I guess every patient has his way of dealing with cancer. I have to know where I’m going and if my path isn’t clear I’ve found that it affects me on almost every level. I have trouble concentrating when I’m untethered to a plan. I am in a dream book club, attended by a loyal cadre of people who I admire for their wit, intelligence and commitment to this region’s well-being. I haven’t been able to read a book for enjoyment in over three years. The right thing to do would be to start going to book club and I expect being around those friends would be good medicine. constant fear and turmoil is unsettling and makes formerly easy tasks more challenging.
There are still unanswered questions left over from our last trip out to M. D. Anderson Cancer Center. I have been researching pieces of information I received in a meeting with Dr. Eric Jonasch and had hoped to have more answers before I wrote this. There will be more information coming as I discover answers. I didn’t ask enough questions in our meeting. Maybe it was because my curious companion, Jill, wasn’t there. I still have access to Dr. Jonasch and have sent him an email that includes the questions I should have asked while I was in his presence last week.
I am thankful that my disease appears to be stable. The tumor in my spine doesn’t appear to be growing and that alone is something to celebrate. This trip was intended to open discussions that will identify and quantify our options in the event that the tumor becomes active again. On our last month’s trip out to Houston to meet with neurosurgeon Dr. Larry Rhines, we heard about a surgical procedure called an en bloc spondylectomy. It is a massive, potentially debilitating surgery and honest to God, hearing that as a possible destination along this trip from hell scared me silent. It marries some of everyone’s most potent fears: pain, temporary mobility issues and possible long-term physical limitations like being able to walk, perform simple bodily functions and the risk of sharply negative changes to lifestyle.
So, we left the last trip with plans to meet with Dr. Jonasch and have him define possible other avenues of treatment in case we have to go down another few miles of active disease dirt road. This was the trip where we had hoped to hear that after a five-year layoff, radiation might be available as a less-invasive, potentially less scary option to beat down active disease. According to Dr. Jonasch and his discussions with top M. D. Anderson radiation oncologists, additional radiation isn’t advisable in my case.
On the surface, that leaves other drug therapies and surgery as my first lines of defense. Bone metastases respond slowly, if at all, to drugs and surgery, as I’ve already explained, is especially frightening and risky. Dr. Jonasch mentioned that we could add immunotherapy as a potential multiplier to my seemingly successful current drug therapy, Cabometyx. That cocktail is what I’m yet to fully understand. I don’t know if we’re talking about a clinical trial or an existing therapy. I don’t know if that treatment is one I could access here or if I’d have to travel to get the therapy. If Jill had been with me, all those questions and likely many more would have been asked and I might know more than I know today.
Being unsure about medical consequences that could so greatly change the outcome of the rest of my days is sobering. It is hard to know how to talk about things that loom so large. This seems like one of the times to just lay it out there and show the immense weight of some of the decisions you have to make when you’re classed as a terminal, stage IV cancer patient. This is the hardest thing I’ve ever had to do. I’ve always been the kind of guy that needs answers — to feel like I’m on the right track. This disease unfortunately doesn’t play that way. Sometimes the fear of the unknown, or even a worse fear of making a costly mistake can mire you in minutiae and rob you of life momentum.
Bringing your best self to bear on that fear and doing what you can to keep moving forward becomes a full time job. It is job that doesn’t make you a dime and costs you real money, discarded organs and flesh. Talk about skin in the game!
There is something about being 65 years old and living almost nine years with a life threatening illness that crystallizes what you’re willing to fight for. I got a couple of clear examples of that on this trip to Houston. Houston is America’s fourth highest populated city. On our recent trips, we’ve seen ugly, car-swollen highways and inviting, interesting city streets that seem to beckon you to stop and explore. Some parts of town seem to have completely gone over to vehicle dependency. Those areas are congested, seemingly soulless and you’re greatest impulse is to get out of there as quickly as possible. Other areas, like the Rice Village neighborhood, move a little more slowly, but provide respite for the eyes and soul. There are many reasons to stop your car, get out, explore and spend money.
There is an important deliberation coming up at Columbus, Georgia City Council this week. I think Will Burgin did a great job in his op-ed piece in today’s Columbus Ledger-Enquirer. We have a once-in-a-generation opportunity to make a decision that shows great restraint and wisdom over a half-mile stretch of 13th Street that bridges the important MidTown and Downtown neighborhoods of our city. We are the only country in the world to have jumped with both feet into an experimental decentralization of our population by moving toward less dense living in the suburbs and away from more dense, pedestrian and alternative transportation friendly living closer to our city centers. It is an experiment that is not mathematically or economically sustainable.
Will does a nice job of explaining this important Tuesday vote. I hope you’ll click on the link in the paragraph above, read Will’s op-ed, and go to MidTown’s blog post about the proposed road diet and make your own determination about the project. Then MOST IMPORTANTLY, get in touch with your city councilor and let them hear from you! Here’s how you can reach your local lawmakers. Don’t sit on the sidelines for such a huge free opportunity from the Georgia Department of Transportation.
I had the completely unexpected pleasure of being seated next to Hardaway High School classmate, Joanie Leech Roberts, last night at the Muscogee County Library Foundation Gala. Joanie and her family moved to Columbus from Rome, Ga. midway of our junior year at Hardaway, when her father’s job with Southern Bell Telephone Company moved them here. The conversation we had as we caught up with what we’ve both been up to since we graduated high school in 1971 made me even more committed to fight for every possible thing that will make this place a more civil, inclusive, prosperous place to live. Author Gayle Tzemach Lemmon’s proclamation from the podium last night that women filling important special operations combat roles has been ignored by ninety-nine percent of our country, makes me wish I had the power to make people get interested in things that are important to our way of life.
In no small way, whether or not we look this GDOT gift horse in the mouth, will make a loud statement about the kind of place in which we want to live. I want to go on record here as saying I want this road diet to happen. I don’t live in Columbus, but we have a business and pay taxes here, and I will be contacting ALL of the city councilors between now and Tuesday morning to let them hear my voice on this important subject. Please join me.
Sorry for the length of this post. I’ll try to do a better job of communicating, but damn, this is getting tough.
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!
PET CT Update
Any time a cancer patient has a scan that doesn’t see active disease it is a cause for celebration. Because kidney cancer sometimes doesn’t take up the glucose used in the PET CT scan like I had today, it isn’t always the best scan to use alone for kidney cancer patients. In these case of the PET CT scan I had today, it was used in addition to a regular CT scan with contrast, which is the one I had last week. Dr. Pippas hoped it would shed more light on the results of the CT scan from last Wednesday.
The good news is the scan today showed no active disease, which can NOT be a bad thing! We are grateful for this news, but we are also cautious. I still need another spine surgery, I think without doubt. But what about the tumor in my spine? At the very least, we have further confirmation this cancer is lazy. Although it is incurable, it is giving me a chance.
What we will do with this chance is left to be seen. I have a lot of research to do now. We have to get the best possible advice from as many smart people as I can get to weigh in on my difficult case. Then we have to make a decision about next next steps. What I hope for is to be able to have the damage the cancer has done in my spine repaired and to come out of that surgery with a structurally sound back.
I am also hopeful to be able to tolerate the side effects being delivered by the Cabometyx and not develop liver toxicity, which will force me off the drug. Although I’m suffering physically from the effects of the drug, my constitution is strong, and I wanted y’all to know we’ve heard some good news today.
The lesson in this for kidney cancer patients is clear: Just like Winston Churchill says, “never, never, never give up.” Having cancer is a full time job. And the pay sucks.