Columbus and the Valley

The Day My Tears Came Back

In an effort to continue to drop digital insight (for my brothers and sisters in the kidney cancer club) about my methodical return from the pits of hell, there is more to report. All of it is good. We spent a nice, long doctor visit yesterday with Dr. Raj Alappan, my nephrologist. Strainer (for those who don’t know, my remaining kidney, which was named in an online contest on my blog) continues to improve. All my numbers relating to GFR, glomerular filtration rate; creatinine; blood pressure; A1C and all other issues with Strainer are either stable, improved or in the case of one important indicator, dramatically improved. Those visits with doctors to receive results from labs, scans or tests are full of tension that just takes a while to slough off.

Yesterday was a good day.

A little over a month ago, I mentioned that I intended to wean myself off the 20mg of Celexa I have been taking daily for almost six years. So it began — I took 10mg for two weeks and 5mg for two weeks and I was free of any daily dose six days ago. I can testify about newly-found clarity, sharpening senses, a greater enjoyment of my work and the ability to feel, without those feelings being filtered through a Celexa scrim.

The returning ability to take a full-frontal emotion head-on was tested today. I continue to get comments every day about my blog post “Sad Display of Bullying at Last Night’s MCSD Board Meeting.” During my conversation with every single one of these folks, I have asked them if they’ve ever been bullied. The ones who have, get a certain look in their eye. The become smaller. They still feel the sting of the encounter, even if it happened a long time ago. Even if it happened in 1958 in the bathroom of East Highlands Elementary School. I grew up on 20th Street, in East Highlands, until my maternal grandparents were both killed in a car crash near Chattsworth, Ga. My family moved into their home on Britt David Road, in front of the Columbus Metropolitan Airport, where my parents still live.

I will never forget the sound of that door being slammed open against the wall and how  my kindergarten five-year-old self felt when I was confronted by a covey of sweaty sixth graders. They pushed me around. They threatened me. They frightened me. My recollection of the incident included somehow having my mom come to school to discuss what I had been through. She’ll likely weigh in on her remembrance, if that story was even worthy of being remembered. Telling the story now makes me sound like a little sniveling wimp but I won’t forget it as long as I have a memory.

An aside: Monday, September 14 at 6 p.m. will be the next regularly scheduled MCSD board meeting. That will be a great opportunity for you to go to a board meeting and show your support for our board, Superintendent Dr. David Lewis, his cabinet and all the educators and employees of our public school system. 

Today at my Wednesday Rotary Club of Columbus meeting, the Muscogee Educational Excellence Foundation (MEEF) Teacher of the Year Sheryl Green was our speaker. Her well-written, emotional, powerfully delivered speech was one of the best Rotary speeches of my 18 years of Rotary. Most of the people at my table wiped up tears, as Sheryl talked about her Jordan High School misfit soccer team. Her stories were tear jerkers, full of the love of a great educator and broken, hard young students, many of whom didn’t hear the words, “I love you.” Ever.

Except when their coach look them in their eyes and told them just that. “I love you.” Some responded and others turned a deaf ear because they weren’t taught how to hear and accept those words.

I didn’t know what to do about myself with tears coming out of all four corners of my eyes. If you get the chance to hear or read Sheryl Green (she has a column every Wednesday in the Columbus Ledger-Enquirer), run toward her. She has a powerful story to tell and she is damn good at telling it.

Back at the office after Rotary, I took a look at my Facebook account and saw a request for prayers for Shannon Burgess, the daughter of a childhood friend of mine, Linda Parks Smith. Shannon is out at M. D. Anderson Cancer Center in Houston, Tex. in the fight of her life. I touched my keyboard and felt the tears flow for the second time today. I wanted Linda and Shannon to know that I was sending my love to them as only a survivor can experience and give. Something about talking to others in a cancer fight makes my memories rise up. I feel so connected to them and so many others who are in all the stages of cancer from recently-diagnosed to tough battle scarred cancer veterans. Sliding back into a conversation that dredged up some of the bad times was a deeply emotional experience for me today. Please remember Shannon and Linda and their families in your prayers. They need them right now.

The tears got next to me. Enough to wonder if I’m emotionally stable enough to do without the medicine. I suspect all cancer survivors are left with their own demons to deal with. Mine were a healthy depth from the surface, in light of the exceedingly tender subjects that I have been a part of seeing, hearing and experiencing today.

Today was a good day.

 

Cancer Flip Book

Thanks to good friend, David Fletcher, I just received 158 pages that chronicle my life with cancer. Jill and I, after consulting with our medical oncologist, Dr. Andrew Pippas, have decided to make the long trek out to Houston, Tex. for a consultation with their genitourinary team. I hope to be able to meet with Dr. Eric Jonasch and Dr. Chris Wood at M. D. Anderson Center.

The medical records department at the John B. Amos Cancer Center has put together the five items that were requested from M.D.A.:
• Latest lab reports
• Radiology reports from day one to current
• Pathology reports from day one to current
• Treatment reports from all procedures
• Last four doctor’s notes from Dr. Pippas

158 pages later, I am holding my cancer life in my hands. Charlotte, the handsome sounding woman on the other end of the phone in Houston in the genitourinary department at M. D. Anderson Center asked me to fax those pages. She says they’ll ponder them in a team setting and either accept our requests for doctors with whom we wish to confer or they will, based on my case, assign us to physicians who can best meet our needs.

So I loaded up the fax machine with the first few pages and stood there, propped up on my elbows and relived the last three years of hell in chronological order, beginning with the diagnosis from Dr. Mike Lake, and then on to paperwork from Dr. Ken Ogan at Emory Healthcare, who was the surgeon who performed the left radical laparoscopic nephrectomy in June, 2009.

A sympathetic wave of nausea struck as I remembered the pain I was in. It was partly physical, but it was mostly emotional pain in my mind’s eye as I headed into surgery a little over three years ago. Like a old school flip book, as the fax machine thumbed the pages into the hopper, I saw an animated, jerky, freeze-framed flashback of what it has been like living with cancer.

I’m a big fan of the Fox Network TV show, “So You Think You Can Dance.” One of the 20 finalists competing for this season’s title is a young man from Duluth, Ga. whose dance specialty is called animation. Here’s a clip: http://www.youtube.com/watch?v=bkTgg-709D4

Watching him dance is like watching an old newsreel at the movies when I was a kid. His eerie moves are like nothing I have ever seen and this herky-jerky feeling I get when I watch him is the way I felt today as those pages slid through the fax and on their way to a place that I hope can heal me.

I’m fairly sure that I’m going to need at least one more surgery. Two days ago I was outside our office talking to my dad when my cellphone rang. “Mike, this is Mac Molnar. Mike Gorum and I are sitting here looking at your CT scans and I want to talk to you,” he said. Basically he told me that he didn’t want to do the surgery and that it made a great deal of sense to go back to the urological surgeon at Emory who did my nephrectomy.

This is what I love about the incredible care I’ve received here in Columbus during my illness. I love a doctor who will tell you that he is not the best person for you for a particular procedure. Mac has operated on me twice. He was the “gateway” general surgeon who got neurosurgeon, Dr. Mike Gorum access to his targeted spot at my spine. That seven-plus hour surgery was intricate and difficult. They did beautiful work in a valiant effort to rid my spine of the tumor that had ravaged it at the L2 vertebra. When Mike realized that he couldn’t completely take the tumor without killing me right there on the table, he stopped and they finished up. These guys are the best at doing huge, difficult surgeries and they also have the balls to say when there is either another surgeon or another type of treatment that needs to be brought to bear.

In my case, Dr. Gorum realized that stereotactic radiosurgery was what I needed to kill the tumor and eight weeks later, after an emergency laminectomy by Mike’s partner, Dr. Marc Goldman, not only was the tumor eradicated from my spine but my legs and my ability to walk were spared. I owe these men and all the caregivers who have touched me a great debt of gratitude for preserving my way of life.

So here we are, three years out from my original diagnosis, nine months from my last back surgery and eight months out from the second stereotactic radiosurgery treatment to my spine. I know I have a 3.9cm tumor on my left adrenal gland that is almost certainly my third round of metastatic disease. In my last post, I shared that I have high hopes for a good outcome from a surgery to remove the offending gland at the hands of just the right surgeon.

I’m really not afraid of this surgery. I believe I have a good chance to move on from it. What I haven’t shared is the thing that I am most afraid of. There has been an apparent simple cyst on my remaining right kidney, Strainer, that seems to have decided to grow. The fact that it is larger worries me. If I find out that I’ve been dealt the worst possible hand and that I have bilateral kidney cancer, then I need to know that sooner than later. I will have to have kidney-sparing surgery at the very least and I don’t even want to ponder what might be the worst outcome of that finding.

Dr. Molnar says that in his estimation, “going in through the front is risky because you’ve already had one big surgery from that angle and things might not be where they’re supposed to be” due to adhesions, scar tissue and the general disturbance of them rooting around looking for suspicious lymph nodes during my Emory surgery. But, he said, going in from the front would give my surgeon the opportunity to “get a look” at Strainer and allow them to biopsy that tissue to find out what we’re dealing with. Going in from the back would be an easier way to get to the adrenal gland, but I would suffer a lengthy recovery period. By doing it that way they’d have to make another incision and basically do two surgeries under one anesthesia to see what is going on with Strainer.

So, we’re packing up for a short in time but long in miles road or plane trip. Charlotte at M.D.A. says that after they get my files, they’ll be able to schedule an appointment after two days of study. That gets me out to Monday. I hope I’ll hear from her on Monday with a date that we can be seen.

I apologize for the length of this post. It is obvious to those of you who are regular readers of this blog that I am scared shitless. I seem to be long-winded when I’m worried, and in spite of my little dose of Celexa, I’m more than a little on edge.

So, what we need right now is more cowbell! Come out tomorrow night, Friday, June 29 at 6 p.m. in the 11oo block of Broadway and join a big bunch of us at https://www.facebook.com/UpTownDrumCircle. It is going to be hot as a two-dollar pistol, but the beat will take you someplace cool! I promise.

 

 

At the Fulcrum

Today is the first day of spring, 2012. As the pollen falls and bursting buds imbue the world with color and fragrance, I’m contemplating my future. This is day two of my latest round of scans, the windows into my body and the prognosticators of my chances for survival.

One hour in a clacking, thumping, thrumming MRI machine. One hour, in between bags of fluids force fed into my vein, and then the wait. I think Dr. Mike Gorum, one of my neurosurgeon spinal structural engineers,  is as anxious as I am to see this round of scans. If Mike and John Cabelka have killed this tumor, I have a great chance to live with this cancer diagnosis. If the tumor is still growing, my chances for a good quality of life for the remainder of my life are slim.

The scans today are going to tell that tale. I want to see the end of that tale. If my life was a book, I’d flip over to the end to see how the next few months are going to play out. I plan on this first day of this spring being the first day of my life’s spring. The good news that I’ll get today, or some day soon, will be the bellwether of just how far into the future I’m going to be allowed to get.

I’m not afraid. I feel like the bumper sticker I’ve seen on trucks driven by obvious rednecks: “I ain’t skeered!” I was talking to a cancer “sister” the other day, extolling the virtues of a small dose of an antidepressant — in my case, Celexa — as a vital part of living with cancer. Without noticeable side effects, my edges are rounded. I can walk straight toward this thing that is trying to kill me without fear or trepidation. People tell me I’m brave. They say I’m a shining example of how to live with cancer. I’m just being the only way I know how to be. I think Dr. Pippas’ urging me to take the Celexa has been so important in my overall comfort, despite my awareness that there are malevolent forces at work inside me.

The love of a good wife and good sons and the arms of my community enfold me as I watch the liquid drip into my arm and contemplate the walk down the hall to be slid into that tube of medical magic. Please pray for good news for us today. I have the feeling that this day is my life as a balanced apothecary scale. The right news today would slip enough weight into the “Good” side to tip me toward good life.

It is so good to feel like writing again. Thanks for going with me.

There’s a Hole in Daddy’s Arm

I’m in the infusion suite at the John B. Amos Cancer Center. Sirius Deep Tracks channel coming through my headphones, needle in my arm pumping fluids in advance of tomorrow’s MRI with contrast. I’m in my favorite spot in the southeastern corner of the room. I guess it is my writing spot, because when I’m here, in spite of all the carnage that is taking place around me, I’m immersed in music and inundated with words.

This MRI is one of the regularly scheduled ones. Nothing alarming going on in the chest/abdomen/pelvis zone that I know about. In the interim between my last stream of posts and today, I’ve had a thyroid biopsy and am scheduled to get the results next week. I’m holding onto hope that this is a benign situation. Nobody deserves to be pounced upon by two different cancers. But even if it is bad news, thyroid cancer is kindergarten compared to renal cell cancer. I’m truly not worried about it. Maybe it is the celexa. Maybe it is my battle-hardened badassness. Or, maybe I’m just stupid.

I have really gotten tough minded about cancer. I feel badly about my response to a longtime, good friend’s admission to me that he is facing early-diagnosed prostate cancer. I remember thinking, “that ain’t shit, brother!” But, thankfully, I tempered my response to something like, “Well, that’s a good one to get if you gotta have one,” or something like that. That was insensitive, at best, and really downright rude. ANY cancer is scary, unwanted and threatening to someone who just got the diagnosis. I intend to try to soften my crusty, cancer-scarred exterior when I’m talking to cancer newbies from this point forward. I should have provided a soft shoulder and a dose of hope for a good outcome. I’d like to put that one on rewind. The one I likely offended reads this blog. This serves as my apology to him and to his beautiful wife. The older I get, the more apologies I find I have to make. I hope I’m around long enough to irritate many more people. I find a sincere apology can go a long way toward mending fences and sustaining long-lasting frindships.

I’ll be writing about the upcoming MRI results and the feedback from Dr. Leichter about my thyroid situation. I’m looking for good news from both of those tests. I’m energized with spring in the air and the prospects of getting back on my bicycle and getting back onto the water in a kayak.

If you’re a regular reader of this blog, you know about my interest in drum circles. I have started a facebook page that I hope is going to help us draw a crowd for the launching of a drum circle in UpTown Columbus. Please take a look, like the page, and get ready to shake something, even it is just your backside. Here is the facebook page: https://www.facebook.com/CSGDrumCircle

 

 

What a Difference a Day Makes!

What a difference a day makes! My surgical wounds are coming along beautifully, I got to spend an hour or so at the office yesterday and I got many hours of blissful sleep last night. The sleep was deep, healthful and pain-free. Nothing short of spectacular!

Have you ever been to Bed, Bath and Beyond? Jill and I took a short shopping trip there yesterday to see if we could find me a new pillow situation. Wow, do they have options!  My good friends and my wife have joked recently about my rather wacky pillow requirements during my nightly rest. Until yesterday, I have slept with a carefully thought out combination of 5 pillows, one of which to Jill’s consternation was covered with a pillow sham.

With three under my head, one to wrap my arms around, one fluffy one between my legs and also the cpap mask, you can just imagine how difficult every turn used to me for me in our bed. If you add incisions, back pain, insomnia and post-surgical weakness to the equation, my nightly sleep machinations have almost required a slide rule.

Yesterday, some of that changed. Last night I slept like a dead man with only one pillow under my head. I still clutched one and had two between my knees, but I’m going back to BB&B some time this weekend and I plan to be an only 3 pillow guy by Monday night. I think some of what has been driving my insomnia over the past fews days was this complicated pillow regimen. How many of you are hiding weird quirks with pillows or some other OCD tendencies? The older we get, the odder we get. Although I got an early start and I’ve decided to tell stories about my quirks. I’m taking one for the team, folks. I’m betting you’re feeling like you’re not a nutty as you once thought. Ol’ Mike Venable, now he’s really a nut!

I was able to determine that Dr. Dan George is still practicing at Duke in spite of the difficult time Dr. Pippas seems to have had getting in touch with him. Noreen McClain is a childhood friend of mine, who married Chick Lockerman, a high school mate from Hardaway High. She is a clinical research coordinator at Duke Eye and if we should happen to need to go to Duke for treatment, it will be nice to have people we know there for a support network.

When Dr. Gorum came to talk to my family after my surgery, I was still mostly unconscious. And since I haven’t had a post-surgery follow up with either Dr. Gorum or Dr. Pippas, I am blissfully ignorant of the particulars of any immediate concerns about where cancer remains in my body and what might be done to rid me of it. My job right now is to heal and get my strength back. We’ll meet with the docs next week and start making plans for future treatment options.

The other thing that I’m happy to report, especially to my office mates who saw me kind of down-in-the-mouth yesterday, is that the addition of the 10 mg dose of Celexa has reached a level in my system that is giving me a much clearer head. I’m frankly astonished at how my anxiety level has dropped. I feel perfectly normal, no nausea and the insomnia seems to be under control. I’m just feeling better inside my own skin. Honestly, I haven’t felt this good since the day before Dr. Mike Lake told me I had cancer.

Today, I’m working on drinking plenty of water, walking around inside the house and outside with our dog, Dixie. Today, I feel like I’m on the mend. Today, I’m watching football games and smiling a lot. It feels good to smile.

Go Dawgs!