In this issue, you’ll find heroes among us and house of heroes, and our story of the publishing legacy.
August
Ideas, Please!
One of the most difficult things about living with cancer — if you’re one of the lucky ones who get to call themselves a survivor for a season — is getting comfortable with reaching out to people for help when the disease starts to take things from you. The sad fact that I have to carry around a tumor in my spine severely limits me from almost every physical activity that requires me to lift more than about 30 pounds. And, I’m beginning to come to grips with the realization that my range of motion has been profoundly impacted. I have weakness and touchiness in my core that turns what used to be easy tasks into productions requiring me devise new ways to bathe, dress and walk around that don’t make me bend over, squat down or do much physical work.
Jill and I live in Seale, Ala. and it takes us about 20 minutes to drive home from our offices in downtown Columbus. Our drive home is super quick and mostly four lanes to within less than a mile from our property. Despite the quickness and ease of getting her from anywhere in Columbus, we just can’t find the perfect someone we need to help us care for and maintain our home place.
We have a dependable person who cuts our lawn, edges, blows off hard surfaces and keeps our fence line clear and trimmed. I want very much to find someone who can do things like the following:
• Be dependable and deserving of our trust
• Keep leaves and debris off our roof
• Clean out gutters
• Keep flower beds weeded and freshly mulched with pine straw
(twice a year)
• Replace light bulbs on house and barn outside and inside
• Keep trees and shrubs trimmed and limbed up
• Spray for mosquitos two to three times during warm months
• Possibly do some bush hogging
• Keep firewood stocked and stacked
• Other gardening that we might need to have done
I have great power tools, a tractor, pickup truck and trailer, and ATV which I could make available for someone’s use. I’d love to find someone we could trust with executing our task list and charging us a fair price.
I know finding someone will be next to impossible, once the spring season arrives. Please share this post and keep us in mind if you hear of someone we might want to consider. I’ve made at least two other attempts to find someone who could fit our needs. I found that I wasn’t able to connect with anyone on a long-term basis.That was during a time in my life when I was attempting to do a good part of these jobs. The time for me to try to keep doing that is over.
We have to keep looking until we can find the right solution to this situation.
Thanks for listening, for your continued prayers and supplications on behalf of our family and a big thanks in advance to whomever is sitting there right now with the perfect solution for us. I am best reached at my email address: mike@columbusandthevalley.com. Thanks for helping us!
Sgt. Stubby Teaches Us About Love and Commitment
Call me crazy if you want to, but I see God in the eyes of my companion animals. I am a regular at our little St. Matthews in-the-Pines Episcopal Church and I like how going there makes me feel inside. I love my little church family and how we’re always there for each other in times of need, but there is something very spiritual that I get when Izzy or Bernie or Elvis or Garth or Joey (and a host of departed animal angels whose earthly remains are buried on our property) look me in the eye. I know they look to me to provide for them and to protect them and I am more than willing and capable of doing that.
I have too many stories I could tell about uncharacteristic things they’ve done during efforts to soothe or minister to me to think they were just random acts. Like the time one of our cats slept on my feet (when he’d never done it before) on the night one of our pack mates died and I was grieving so hard I didn’t think I’d see another day. I believe animals know when we’re hurting, or sad, or happy or in need of love. And, if you’ve shown them love and compassion, they’ll give it right back.
Then Stubby came along.
Jill and I were pressed into service about a year ago in our roles as ultimate cheerleaders for this town. A group of people from Ireland and maybe Paris (not sure where all they came from) were coming to Columbus to join some folks from Fun Academy Motion Pictures (Columbus’ own animation film company) and our job was to provide some local color to help them fall in love with this place that we already hold dear.
++++++SINCE ALL THE CONCERNED PARTIES AT FUN ACADEMY STUDIOS ARE BUSY LAUNCHING THEIR FIRST MOVIE, I AM WRITING THIS FROM MY MEMORIES OF THE CONVERSATIONS AND OBSERVATIONS DURING THE PAST YEAR. IT ISN’T PRACTICAL FOR ME TO ASK FOR INTERVIEWS AT THIS CRITICAL TIME IN THEIR FIRST PROJECT’S LIFE.++++++
I’ve had so many things I wanted to say about the Sgt. Stubby project, but with the exception of a ridiculous number of Facebook postings, I’ve held back until this day, because what I have to say and how moviegoers respond to #StubbyMovie will to a great degree depend on what happens in the film industry in Columbus, Georgia.
Here’s what I know:
From that very first time we met Richard Lanni, Laurent Rodon and the others they brought to Columbus in the early days of this project, I was hopeful that something really incredible was about to happen. There were discussions of the Technicolor company possibly having a presence here, of an international animation event happening one day in Columbus, of Fun Academy Studios hiring between 300-500 highly-paid animators (some might be trained at Columbus State University) and that they might be working in 25,000-30,000 square feet of downtown Columbus office space. At the time of these meetings, California was still the number one movie producing state in America. Now, things have changed. Now the #1-in-the-world Georgia film industry is a $10,000,000,000 juggernaut and there is a little statistic I want you to know about: Of the 25 highest grossing films of all time in every category, 21 of them have been animated films!
Animation doesn’t depend on the weather, the temperature or temperamental actors. I don’t know a lot of things, but a concoction of the things I do know about the potential of this industry being a new and extremely important addition to the Columbus region’s economic development activities really got my attention.
The planets will have to align to make that happen. BUT HERE IS THE NUT OF THIS ENTIRE BLOG POST: Nothing will happen unless everyone who has a voice raises it to support this Sgt. Stubby movie. The fact that I see this as a potential multi-million dollar industry in my town is the reason you’ve seen my very active Facebook Stubby posts. If I can influence people to buy movie tickets and tell their friends, I will have done my part to participate in what could be a huge contributor in the success of Columbus, Georgia going forward.
That brings us to a couple of weeks ago, when Jill and I joined a few people from here at Sgt. Stubby’s world premiere in Los Angeles. We got to watch children see the film. We got to hear their comments and we got to meet people who have the chops to weigh in on just how good the movie is, both on the content side and the creativity side. People LOVE Sgt. Stubby!
This is all exciting and thought provoking on so many levels. But for me, the clear facts that this rescued dog bonded with a human and braved things that no one should ever have to see to guard and protect his human and those whom his human loved almost instantly brings me to tears. There is something about my cancer situation and the closeness that I share with my companion animal pack that makes me deeply reverent of the bond that we have with our pets.
This film explores those human/animal bonds in such a cool way. And, in this 100th anniversary year of Fort Benning, the 100th anniversary of World War One and the deep convictions of animal shelters to rescue deserving animals, the Sgt. Stubby film has a shot to be a break out film.
My desire for the film industry being a success here is driving my passion to share this story. I hope you will join me, raise your voices and help us get people to pay to see this film.
Will you join me?
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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.