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.