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.
At the end of the first article, we were about to visit the Cleveland Clinic. We did that, seeing an oncologist on the Friday before Thanksgiving and a surgeon the following Monday. The oncologist advised us, after reviewing a number of the films we had brought with us in CD form, that the kidney cancer, having recurred, would now be considered systemic and that the surgical cure we were hoping for – like the operation I had done in February 2008 to remove my left kidney – was not a viable option, at least not at this point, if ever. He said that it would make sense for me to go on one of the new “wonder drugs” which had been approved by the Food & Drug Administration (FDA) in recent years specifically to treat advanced renal cell carcinoma, or to participate in a clinical trial. He noted that I could have the systemic drug treatment regimen administered by the Cleveland Clinic or have it done at home in Denver at the University of Colorado (CU) Medical Center.
It was not the most encouraging medical visit I had ever been on, and it made for a long and stressful weekend in Cleveland as we awaited my appointment with the surgeon on Monday. But the wait did leave us free to visit the Rock & Roll Hall of Fame over the weekend. We only had about three hours, way too short to do the place justice, but enough to give us a tantalizing taste.
My wife and daughter were mesmerized by the Elvis exhibit, featuring a giant-screen version of the King’s first comeback concert, the one in Las Vegas. When I was finally able to drag them away, we wandered into the new Beatles exhibit, which featured every album the world’s most influential band ever released, with the boys and George Martin providing background information about each one. I was so entranced that I sat on a bench and spent an hour and a half listening to the back story of every album from “Please Please Me” to “Let it Be.” It was great!
But I digress, as usual. Early Monday afternoon we were back at the Cleveland Clinic, waiting to see the surgeon. Our appointment was for 1:20 but he was running late, and then later. His nurses and assistants did the usual checks, like blood pressure and heart rate, as well as some blood tests and other procedures. One hour passed, and then two, as we sat around growing increasingly nervous. I had made our flight arrangements so that we would depart Cleveland’s Hopkins International Airport at 6:40 that evening, thinking we would make it with several hours to spare. At 3:30 or so I found one of the nurses and conveyed our logistical concerns. The doctor walked in at about 3:45. We liked him from the start – he exuded interest and friendliness and projected an air of quiet confidence. And well he should; his credentials were stunningly impressive.
Although the oncologist had told us that surgery wasn’t a viable option one kidney cancer had gone systemic, the surgeon said he would not rule it out at all but wanted me to undergo two or three cycles of systemic drug therapy at the CU Medical Center, and then would see me again. And, sure enough, his office recently made a follow-up appointment with me for February 21.
Because I had elected, with the approval of the Cleveland Clinic physicians, to have my systemic drug treatment overseen at the CU Hospital, with a long-time colleague of theirs whom they strongly endorsed, there was some additional waiting involved. It was the beginning of the Thanksgiving week and the doctor didn’t have an appointment available until Tuesday afternoon December 4. As luck would have it, all of the specialists in urologic oncology meet every Tuesday morning to review and discuss new cases, and to make treatment recommendations. So, we had to wait an excruciating additional week to find out what drug or combination of drugs the doctor and his colleagues were going to recommend for me.
On the afternoon of December 12, the doctor called to tell me that he and the other specialists were recommending that I take Pazopanib, one of the powerful new drugs which have been approved by the FDA in recent years to fight renal cell carcinoma. MayoClinic.com says that “Pazopanib interferes with the growth of cancer cells, which are eventually destroyed.” Another medical website notes that the drug works “by attaching to certain receptors on cancer cells and cells in blood vessel walls and blocking the action of the protein kinases. This stops the signals that tell the cancer cells to grow and multiply. It also stops blood vessels growing into the tumor. This reduces the tumor’s blood supply and with it, its supply of oxygen and nutrients. Both of these effects stop the tumor from growing.”
The doctors and the pharmacist advised us that patients taking Pazopanib could experience a wide variety of side effects, some of them serious. Accordingly, they had me do a series of blood tests, an ECG, etc., to establish a baseline before I started taking the drug. Everything came out normal except my heart rate, which was low enough after years of running and working out on a regular basis that it kept setting off an alarm in the measuring device.
They will have me retake those tests every two weeks and will measure them against the baseline test results. The first such update was done on December 31 and the second one took place a bit early on January 10. The test results were all normal, and I have experienced no side effects as a result of taking Pazopanib. After 90 days, I will have a CT scan done to see how well the drug is doing its job. I’ll have no way of knowing for sure until then how effectively the drug is fighting the cancer cells, but I am confident that it is doing its job. I don’t look sick or feel sick, and soon I hope and expect to not be sick.
I have remained asymptomatic and have felt well enough to not only continue doing the training and course development work I had been doing, but also to accept a new, part-time temporary consulting job in employee & labor relations with the Bureau of Reclamation. I wasn’t looking for work at the time, but the agency made me an offer that was too good to refuse and has treated me extraordinarily well, having provided me with the opportunity to telework one day a week and whenever I don’t feel like going to the office. That hasn’t happened yet, and I don’t anticipate that it will, but it is very nice to have that flexibility just in case. And the folks I work with graciously accepted the fact that I had training commitments when I was offered the assignment and are willing to let me work around them.
I got the job offer after being recommended by former Human Resources colleagues with the Bureau of Land Management, to whom I am deeply indebted in that our medical expenses are clearly going up, and it will be helpful to bring in some additional income. Training assignments often pay quite well, but are more sporadic than consulting work, and there is something very comforting about having a paycheck deposited electronically in my checking account every two weeks.
On Sunday, December 16, I returned to the football field after an eight or nine week absence. My teammates, a number of whom I’ve been playing with for 24 years or more, were really happy to see me, and I was twice as pleased to see and be back with them, if only for one week. I was not in football shape but played well enough not to embarrass myself and we all joked with and ribbed each other just like old times. Now that I’m on the Pazopanib, I’m not supposed to engage in activities in which I could get bruised, since I could have trouble stopping any bleeding, and there is also the risk of a blood clot. But this was one day before I started on the drug regimen, and words are inadequate to describe what a joyous day it was. And adding to my bliss was the feeling that I was giving the cancer a one-finger salute and making it clear that I’m planning to beat it again. And as soon as I’m off the drug I will be back on the field again, as well as on the ski slopes.
Meanwhile, one thing I can do is run on the beach, so we’ll be spending a couple of weeks on Maui hanging with human and cetacean friends.
Am I afraid? Damn straight! “Cancer” is one of the more terrifying words in the English language and “advanced cancer” multiplies the anxiety level by a power of 10. But I’m more determined than fearful, and, as I’ve told my friends, I hope to beat the cancer so fast that my recovery makes The Journal of the American Medical Association, or at least Sports Illustrated.
Among the lessons I have learned so far is that, as Dr. David Agus pointed out in his book, The End of Illness, we have to be “fierce advocates for our health.” He further opined that your doctor is your partner in health care, not your friend, and that you need to do your own research and ask your medical providers any question that is on your mind.
Dr. Agus cited the example of Lance Armstrong, the now-disgraced seven-time winner of the Tour de France, who, in the spring of 1996, was told to go home and spend time with family after it was determined that his testicular cancer had spread to his brain, lungs, and abdomen. All of his doctors agreed that death was looming. But rather than accept that bleak fate, Armstrong conducted relentless personal research, found a three-month clinical trial in Indianapolis, and was put on a drug that was derived from platinum. Thirty months after Armstrong started taking the drug, he was pronounced cancer-free.
Dr. Agus went on to say that there were at least two lessons to be learned from Armstrong’s experience: 1) When it comes to “ailments such as cancer, prevention and early detection are the keys to survival”; and 2) Rather than “accepting defeat or the common clinical wisdom at the time, Armstrong educated himself and became his own advocate to find a personalized approach – albeit a desperate one- that had the potential to change his health outcome. It saved his life.”
It is also, I believe, critically important to have a strong network of support, which I am very fortunate to have in terms of family, friends and associates. A remarkable number of people keep up with me on a regular basis to see how I am doing, including people I worked with as long ago as the early 1970s. And many FedSmith.com readers whom I don’t know personally have contacted me directly, offering support, prayers, and, in a number of cases, medical stories of their own, including a particularly resilient woman who is a three-time survivor of cancer. Numerous friends have offered to transport me to and from medical appointments, to run errands, and to be there any time I feel the need to talk, curse, scream, etc. So far, I have not needed any help, but I have been greatly touched by all of the offers and encouraging words, and I may actually need the proffered help somewhere down the line.
I would strongly encourage any readers who are dealing with their own serious medical issues to keep a positive attitude, to take the best possible care of themselves, and to find the best medical providers in the specialties with which they are dealing. It is easy to “Google” within seconds an absolutely astonishing amount of medical information. I found by checking the U.S. News & World Report’s annual survey of the best hospitals in the U.S. that the Cleveland Clinic was number one in urology and nephrology, ahead of even the Mayo Clinic and the M.D. Anderson Cancer Clinic. And many big cities, such as Denver, publish annual lists of the best doctors in a wide variety of specialties. There are so many exciting new developments in the medical field, such as new and improved drugs, that whatever illness a reader may have, chances are good that treatment options for it are expanding all the time.
I’ll continue documenting my medical adventures as long as FedSmith.com is willing to publish them, and will share as much information with readers as possible about what I have learned and will learn from them.