Editor’s note: Steve Oppermann is a retired federal employee and author for FedSmith.com. He has chosen to share this personal story in the hope that it will both inspire and help others who may be facing their own battles with serious medical issues.
That Mark Knopfler (Dire Straits) lyric has pretty much summarized my last few months. The computerized tomography (CT scan) I had done at the Cleveland Clinic on February 25 showed that my advanced kidney cancer was “stable.” This type of CT scan is explained, courtesy of the Mayo Clinic, as “creating cross-sectional images of the bones and soft tissues inside a patient’s body.”
Virtually sneering at the cancer’s apparently feeble efforts to take down my aging body, I ran in the new 1.5 mile “sprint” at Denver’s Cherry Creek Sneak on April 28, finishing in what I considered to be a respectable time. I played touch football into May before tweaking my left iliotibial (IT) band, a body part I didn’t previously even know I had.
My bus from the Denver Federal Center had arrived at the 10K Bolder Boulder at 6:30 on the morning of the Memorial Day race. The sun already seemed to be blazing out of the Boulder sky by the time my “wave” went off at 7:19. Unless someone had tampered with the mileage/kilometer markers along the way, the distance was still 6.2 miles, but I could have sworn it was considerably longer this time. If not, why was I so tired? I did think about quitting, more than once, and my worst-ever time would have done a turtle proud, but somehow I willed myself across the finish line.
Just when I was getting more comfortable taking batting practice with my Louisville Slugger, I was mugged and the bat was ripped out of my hands. My CT scan on June 3rd showed that the drug had shrunk some of the cancer cells but that more of them had increased in size, albeit by small amounts. The radiologist stated in his report that on balance the disease had progressed, which was not what we were hoping to hear.
Even the cancer terminology seemed backwards. When people come down with any of a wide variety of illnesses or are recovering from surgery, family, friends and co-workers often inquire about the progress they are making toward getting well.
With cancer, many tests are designed to check on the progress of the disease. Progress is thus viewed, at least by me, as a negative thing – meaning that the cancer has progressed, which is to say it has gotten worse.
We were surprised and disappointed at the newest CT results, particularly since I had continued to feel so well, without symptoms or side effects other than fatigue.
When we first met with the oncologist and the surgeon at the Cleveland Clinic in November 2012, I would have been glad to enter a clinical trial once I learned that my kidney cancer from early 2008 had returned and had gone systemic. At that point, though, there was no clinical trial for which I qualified.
Once Pazopanib, the cancer drug I had been placed on, started to fail in my case, I was suddenly qualified for a clinical trial, since the drug I had been on had now failed to stop the cancer from progressing, if only by a small margin. On the positive side, there are new drugs and new therapies being introduced and tested all the time. One of the “tricks” is to find a medication or combination of therapies which work for you or simply allow you to live long enough to be around for the next great breakthrough. Many of today’s most effective drugs against systemic renal cell carcinoma, for example, have only been around for a relatively short time.
This particular clinical trial was designed to test two Bristol-Meyers-Squibb drugs, one of which had already been approved by the Federal Food and Drug Administration; the other one would have been considered experimental. The determination as to which participants were to receive what drug would be made randomly, about three days in advance.
Two clinical researchers here at the University of Colorado and at the Cleveland Clinic both favored my participation in the Bristol-Myers-Squib experiment. A third clinical researcher at the University of Colorado Hospital felt that I could have continued to take Pazopanib, since he did not see much evidence of disease progression.
I signed up for the Bristol-Myers-Squib clinical trial without being sure I was actually going to be able to participate, since half of the participants would be drawn from each of the two groups of participants. Our “incentive” was that we had great confidence in Doctors Jorge Garcia and Michael Glode at the Cleveland Clinic and the University of Colorado Hospital, respectively. We were equally impressed with Dr. Thomas Flaig, also of the CU Hospital. I took all of the blood tests while I was at the hospital, since they were prerequisites for participation.
My last appointment was for a brain scan that was likely to be approved in two weeks. If a scan showed that there was any trace of cancer in the brain, a candidate’s participation would be ruled out, at least for the time being. I had a brain scan in or about last November and it had come out clean, which I expected to happen again this time.
I was going to joke with the radiologists as usual, letting them know that I was paying them good money for that test and that I thought the least they could do is to keep searching until they had found some evidence of a brain.
But I was surprised to hear from Dr. Flaig early that day. He had specifically called me at home rather than from his office that afternoon, since he knew I would be leaving for Washington, D.C. the next morning for the balance of the week. Drs. Glode and Garcia had expected me to pass the lab test, but that didn’t happen. In fact, I was found to have 50 lesions in my brain!
I was so shocked about the lab results I had received from Dr. Flaig that I couldn’t even let my wife know that I had received them that night and would then promptly be flying out for the rest of the week. By the time I got back to Denver on Friday, my wife and daughter had arranged for us to meet with University of Colorado radiological specialist Arthur Liu, M.D., to explain the procedure.
During that meeting a full-brain flood of radiation was recommended over a 10-day period. So we left the doctor’s office in a bit of a shock but felt we didn’t have much of a choice. We left Denver early Sunday morning for Monterey, California. As we landed in San Francisco I was experiencing a bit of what can be explained as a “brain fog,” with more than a bit of cognitive confusion. That pretty much lasted on and off throughout our time in northern California and is still part of my daily life at the moment, although it has eased considerably since I started taking the new medication. Dr. Liu explained that this condition can be caused by lesions in the brain.
Because the changes in our plans had taken place so abruptly, with no more than a day to adjust to another new plan, which would be a Gamma Knife treatment, Dr. Liu wisely advised us not to cancel our planned eight-day visit to Monterey while the CU medical team worked out a new plan for us.
I plan to develop additional articles on my medical condition in the near future, particularly since I feel have gained a bit of recent insight into what can happen when part of someone’s brain suddenly decides to play “hide & seek” with its ostensible owner.
(Author’s note: Family and friends, on learning that I had unexpectedly developed brain lesions, had pushed me to allow us to participate in a “Caring Bridge.” I agreed to do so only because of the incredible goodwill and support demonstrated by my family, friends, FedSmith.com readers, etc. Brain lesions aren’t necessarily developments to be cherished, but I am very optimistic about my upcoming participation in Gamma Knife Radiosurgery starting at the University of Colorado on July 17)