Editor’s Note: It is with considerable sadness that we publish the last articles from Steve Oppermann. Steve passed away on December 22, 2013 after a long fight with his illness as he has described in his articles. Steve was a longtime federal employee who worked in the Human Resources field for many years. He chose 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.
The most recent article about my medical condition was published in FedSmith.com on July 24, 2013. I had just been diagnosed as having multiple lesions in my brain, disqualifying me from participating in a new Bristol-Myers Squibb (BMS) clinical trial of two drugs, one of which had already been approved by the Food & Drug Administration (FDA). The other had not yet been approved by the FDA but that was the intention of BMS in carrying out this clinical trial.
My brain had so much trouble processing even basic information during subsequent travel to Washington, D.C., and Monterey, California, in back-to-back weeks, that I was more than willing to listen to the recommendations of the University of Colorado Hospital radiological oncologist. But when he suggested that my brain be “flooded” with radiation for 10 straight business days, and told us about the possible adverse effects of such treatment on one’s cognitive abilities, we said we’d like to hear about other options. He then spoke on my behalf to the head of the Gamma Knife radiation unit, suggesting that I be given the opportunity to participate in that course of treatment instead. He said that while Gamma Knife treatments have been used primarily in melanoma cases, kidney cancer is closely related.
I’m still not terribly clear about how the Gamma Knife process itself goes, since I’m legally blind without my contact lenses or glasses, and the medical staff did not want me to wear either of those visual aids during the procedures. My glasses wouldn’t fit under what I call the “oversized metal birdcage” and any problems my contact lenses caused during the procedure could have been disruptive. So, I know that I was placed into a CT scan-like machine but that’s about all I can say for sure, aside from the fact that I had experienced marks and temporary soreness in areas on both sides of my forehead and at the back of my head, just below each ear.
After the first treatment, I had a pretty major headache, undoubtedly due in large part to my ongoing, albeit unsuccessful, struggle to escape from the metal cage to which my head was “chained” when I felt particularly uncomfortable. The medical staff adjusted the painkilling medication for the remaining two treatments so effectively that I had no further headaches. And it probably helped that I no longer tried to yank my head loose from the “chains.” During the mornings, the staff would measure the number, size and behavior of lesions in my brain for 2 to 2 ½ hours. In the afternoons, they would typically administer the Gamma Knife radiation treatments for three hours or more.
By coincidence, my friends and business partners John Jones, Carrolle Rushford and I had been conducting training on the Americans with Disabilities Act Amendments Act (ADAAA). A couple of areas related to the ADAAA which we covered to a significant extent in all of our training sessions were Traumatic Brain Injury (TBI) and Post Traumatic Stress Disorder (PTSD). My best guess in my own situation was that I was suffering from a version of TBI. I wasn’t dealing with external trauma to my brain; mine was courtesy of my recurrent kidney cancer.
There were many times during my so-called brain injury that I felt as if I had been cast adrift in a vast ocean with no clue as to how to get to shore. For example, in the supermarket where I normally shop, I picked up my groceries and went to the self-checkout lane, where I had to input my “alternative ID,” which is simply my home phone number. I could not come up with it and had to have one of the cashiers help me check out. It was at once a scary and humiliating experience.
People who know me have seen my mind wander when I was completely healthy, but family members and friends could tell that this was well beyond even my normal forgetfulness.
A week or so after the second Gamma Knife treatment, I developed a significant fever as well as an ongoing headache. That combination, plus the fact that my new anti-cancer drug had left me virtually unable to taste and smell food, caused me to drop 15 pounds within two weeks.
I hate to admit it, but I may well have contributed to my sudden illness by having failed to get a bad molar on the lower right side of my jaw removed when it was brought to my attention by a new dentist several years ago. I am fearful of dentists, and I am cheap, a potentially deadly combination. When I saw how much the dentist’s “care plan” would cost (the plan was aptly named, since I could see that I would be helping to care for the dentist and his family for some time) and could honestly claim that my tooth wasn’t hurting at the time, I declined to have the work done. That decision came back to haunt me in spades when my previously silent molar suddenly started screaming at me.
The doctors could not let me continue with the Gamma Knife treatments until I had the infected molar removed, so I had to have “emergency” dental treatment. The two women who combined efforts to take out my bad molar were not just extremely proficient but also funny and entertaining. And they made it possible for me not to have to postpone a Gamma Knife appointment, which was a big deal.
After missing a week of working out at the YMCA due to the fever I had contracted, I was able to resume at least some of my workout schedule. In light of my brain lesions, the oncologist suggested that I walk instead of running my usual mile and hitting the heavy bag. It has not been easy for me, psychologically, but I was determined to stay in the best physical condition possible. So, I now spend 10 minutes pedaling hard on the stationary bike, then walk a fast mile on the track that looks over the gym, and work out with weights.
Aside from my sudden weight loss and the ongoing problems associated with my lack of ability to smell and taste many foods, I quickly began to feel better as soon as the fever departed. My medical visits remained substantially the same and included my oncologist or members of his staff every 2-4 weeks and, blood tests.
As I recovered from the Gamma Knife treatments and the high fever, I continued to receive great support from family, friends, business associates, and FedSmith.com readers as well as a large number of remarkably skilled medical professionals. And I could not have asked for better treatment than I have received from Bureau of Reclamation management in general and from the Human Resources office in particular.
That takes me up to mid-September, when a routine CT scan to monitor the performance of my anti-cancer drug (chemotherapy in pill form) disclosed that I had a blood clot in each lung. Within minutes after we got home from the scan at the hospital, I received a call from an oncologist conveying that information and stressing that I needed to come back to the hospital right away and check in at the emergency room (ER). Because blood clots apparently reach the lungs via the legs (I didn’t know that), they did a test on both legs. My right leg was fine, as I expected, but the technician spotted clots under my left knee and on down through my calf. I was skeptical but she showed me the clots on a screen while she was focusing on them.
I was immediately assigned to a hospital room as an in-patient. By the time the medical staff was done with me, I had been in the hospital for 3 ½ days, an all-time record.
I will continue the saga from there in the next chapter.