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!
Cancer patients don’t fare well when they’re running without a plan. I’m running. And, at this moment, there is no plan. I have a new renal cell cancer metastasis in my spine at L-2. This is the worst possible place for a new metastasis, because it is likely that I have maxed out the amount of radiation I can have at that place on my spine. After all, my middle initial is M., which surely must stand for Murphy, as in Murphy’s Law: “Anything that can go wrong, will go wrong, and at the worst possible time.”
Dr. Pippas has scheduled a nuclear bone scan which will be done this Friday. It will show whether there are any other bone metastases in my body. This coming Tuesday, March 14, I will have a CT scan of the chest, abdomen and pelvis with contrast to determine if there are any soft tissue mets anywhere.
Once these files are in hand, we’ll meet with Dr. Pippas on Wednesday of next week to discuss options. In addition to Dr. Pippas’ input, one of our angels has arranged to have my files reviewed by some world-class renal cell cancer physicians both in Europe and around the United States to see what they deem is the appropriate next steps for us to take. We’ll take all this information, along with our conference with Dr. Pippas and Jill and I will make decisions about what is next.
Right now, there are way more questions than answers. We intend to flip that around just as soon as is humanly possible. Primary RCC tumors can grow at about a centimeter per year. Metastatic disease can grow at the rate of a centimeter per month! There is not much room for error and NO TIME to screw around making a decision. We’ve got to make the perfect call, and put a plan in place right now.
Jill and I just got back in the office from a long walk through downtown Columbus. Collecting our thoughts, expressing our love and commitment to each other, even in the face of fear and anxiety about what lies ahead. On this day, International Women’s Day, I am so grateful to be bathed in the love of an incredible spouse, a wonderful mother-in-law and a lion of a mother.
We expect some rough days ahead and I’m asking in advance for your prayers and supplications on our behalf. Our sons are in our foxhole along with a solid team of medical professionals and an army of thousands of supporters and prayer partners. With all this, we surely can’t lose this battle now. If you’ve been a regular reader of this blog, you know that increased fear equals increased blogs posts. I invite you to come along. This blog is as real as it gets when it comes to kidney cancer. I’ll try to stay up to date with posts about what is going on. This is the best way for us to communicate with friends near and far.
If you’ve never had cancer, you likely won’t be able to appreciate why this day in early February was so special for me. If you’re lucky, you get to live with cancer. And, if you’ve been one of the lucky ones, you’re living among angels, because angels are part of the magic, they make the stars align, they put you in front of just the right physicians and caregivers, maybe the only ones who know what to do to help you live.
Several weeks ago, Jill and I met one of our angels.
If you know us, you know our story. If you’re new to my blog, there are a couple hundred thousand words here going back to June 10, 2009 when I had my first encounter with renal cell carcinoma (kidney cancer or RCC). Very shortly after my diagnosis, Susan Poteat reached out to me after I posted a plea for help on an email LISTSERV named acor.org, now called smartpatients.com. I had done enough research to know this cancer was rare and dangerous and I desperately wanted information that might help me live.
Susan is a locum tenens medical physicist. Locum tenens means “to hold the place for, to substitute for.” So, she travels to a clinic or hospital that has a medical physicist shortage for one reason or another and fills in for them on a contract basis until the person returns or the job is filled. She works in radiation oncology, with oncologists, surgeons and technicians watching over the numbers, radiation dosages, the patients internal organs, metabolic rates and blood flow.
In addition to her sparkling intelligence, she has a servant’s heart for people with RCC because her medical physicist husband, Gary, is also a renal cell cancer patient. Susan has been there for me more times than I can count over the past eight years since cancer came. For eight years, we have talked on the phone, emailed and texted, with information flowing in only one direction — toward me. We have talked when I was afraid I was going to die and when I was flying high from a stint of “normal,” those days when cancer seemed to be leaving me alone. She has been a great listener, a steady source of good, useful information and a beacon of light during days that were sometimes so dark I couldn’t see the end of my nose.
I started writing this post a few weeks ago, the day after we met Susan and Gary for lunch here in Columbus during our visit. I put it aside, to come back to and information I just received today made me get this back out and finish the post. Because today, I found out that I have another metastasis in my spine. That is really all I know at this point. More questions than answers. Is the spine the only place where I have active disease? Is it is the same place as last time? What about my lungs? My brain? Are there mets there, too? Do I go back to systemic therapy? Is radiation alone going to do it, or can I even have more radiation at the site where there is active disease?
I’ll know the answers to all these questions and many more when I have definitive CT and bone scans. And, when I get those answers, I’ll be posting about what we found. I’ve known for eight years that there was a high probability that this day would come. Knowing the day has arrived is still just as shocking as I thought it might be. Not so much fear, at this point. Just anger, and that might not be a bad thing. I know all the prayers and support we’ve received have served us well these past eight years, and with this post, I’m looking you right in the eyes and asking for their continuance.
We will, once we know what we’re dealing with, run straight at it. That’s the way we roll around here. I’m expecting this to be another milestone which we’ll conquer. In the meantime, I’m going to be busy staying busy.
Saturday night in downtown Columbus was a perfect night for me. We have been trying for what seems like years to get dear friends, Doctors Janie and Danny King from Eufaula, Ala., to shoehorn us into their busy, busy schedules and come to Columbus for an evening of dinner and entertainment. These guys are really busy with their internal medicine family practice and a robust list of Eufaula social obligations. We love being with them and Saturday night was a perfect storm of perfect for me.
Even though they have been to Columbus many times over the years, they aren’t familiar with Columbus neighborhoods and many of the newest amenities that are coming online in our fair city. Until Saturday, Danny hasn’t even seen the inside of the Bill Heard Theatre at RiverCenter for the Performing Arts. My absolutely favorite thing to do is to get my hands on someone who isn’t familiar with Columbus. I get to regale them with stories of the people and places of our area, the public/private partnerships that have shaped our landscape, our river, the beauty of MidTown, the new west bank jewels in Phenix City, new restaurants, the longest continually-performing symphony orchestra in America, our hotels and venues, downtown shopping and the promise of many more great things to come.
The Piano Men show with our Columbus Symphony Orchestra was so damn good. I sang along and chair danced my way through the two and a half hour long show. The CSO provided the perfect backdrop to the timeless music of Billy Joel and Elton John, performed flawlessly by a Canadian dude, a couple of side men and a local sax player they added to the show for a few numbers. If CSO conductor George Del Gobbo was put off by having to play an evening of pop music, he didn’t show it. He hammed it up with the Piano Men performers and seemed to be having a great time. Doing shows like this makes our symphony so much more approachable by folks that aren’t so much into classical symphonic music and I think these shows help people connect with this hugely important cultural resource.
We ran into Chamber President and Chief Executive Officer Brian Anderson, his wife Heather and his sister, Whitney, from Charleston, S.C. twice during the evening. They had as much fun as we did, it seems, despite last night’s chilly and blustery weather. I was a little bit disappointed that the streets of downtown weren’t quite as busy as a usual Saturday night. Broadway is a vibrant, exciting place to be on most weekends.
Way to go, Columbus! Our Eufaula friends were wowed by what they saw here on Saturday. I’m sure this is a scenario shared by many who come here for a visit and fall in love with this bend in the river. I’d call this a Chamber of Commerce kind of night. Wouldn’t you, Brian?
I am proud to be known as a community supporter. Our jobs as magazine publishers mean we get to be out in the community in a big way. Shows at local entertainment venues, theater, public meetings to discuss changes in our community, news conferences, town hall meetings on various topics, educational conferences, Chamber of Commerce strategy sessions, downtown activities and any other activity that we feel we can support by a generous portion of our time, talent and the pages of our magazines. Because of the exposure our jobs bring, Jill and I are fortunate to almost always get a seat at the table.
What saddens me as we move through our lives is the shocking lack of depth among the numbers and types of people who show up when there is a job to be done. Because we go to so many things during the year, we have a well-educated perspective on the others in those rooms.
Let’s start with voting. With political unrest at unprecedented levels, one would think that folks would come in droves to the ONLY place where they have a real voice — the polls. Not so. I spoke a few days ago with Muscogee County Election Director Nancy Boren and asked her to send me some Muscogee County voter turnout data. With General Elections bringing out less than 50% of registered voters and Primary Elections turning out less than 20% of registered voters, these are sad commentaries on just how much residents of Muscogee County really care about who gets into office.
Even though this is the most telling symptom of public apathy, it goes much further. Recently Jill and I attended a public meeting put on by the Community Foundation of the Chattahoochee Valley and the PATH Foundation, an Atlanta consulting group that designs and implements green space/cycling/skating/running/walking solutions for cities.
A major effort was expended to get people there and the size of the crowd was disappointing. In a recent issue of the Ledger-Enquirer it was announced that city council had unanimously voted to accept the PATH Foundation’s designs for 25+ miles of trails that will tie into the RiverWalk and other existing trails in our city. PLEASE TAKE SOME TIME AND LOOK OVER THIS 40+ PAGE DESIGN PLAN. If this doesn’t excite you, it is highly likely you can’t fog a mirror.
Find something about Columbus that you love and get plugged in. If you don’t know how to make contact with the right person, send me an email and I’ll help. Use social media to put yourself out there. There is a cause out there that just might match your philanthropic interest. Or there might be a need that you have the passion and resources to fill. If everyone will use their time and talent we’ll be way further down the road to perfection than we are today. Pitch in, people! Here’s a great way to start: Like the Friends of Columbus River Link Facebook community page!