The Journey No One Chooses
Navigating the blind turns of cancer treatmentby Gary Scudder | Features, Spring 2011 | Comments | Print |
This article and the accompanying sidebars discuss cancer from the perspective of two patients—Professor Gary Scudder and alumnus Michael Oyler—and a caregiver, student Sarah Burfitt. All three express gratitude for the help and encouragement they have received from Owen’s close-knit community, and they hope their stories provide solace for others facing similar journeys.
Imagine going to see your dermatologist and leaving her office knowing you have several swollen lymph nodes. That is exactly what happened to me in early August 2009. I was told “run, don’t walk” to my primary care physician, which I did—the dermatologist’s office even called to make sure I had followed their directions. My physician quickly ordered a CT scan, and it verified that my numerous swollen lymph nodes were likely a sign of some form of lymphoma. It actually took 20 more days until we had the final diagnosis: aggressive stage IV mantle cell non-Hodgkin’s lymphoma.
When any cancer is diagnosed, the words “stage IV” and “aggressive” are not what you want to hear and serve to raise anxiety levels to new highs. Immediately my mind jumped to scary questions like “How long do I have to live?,” “Is this kind of cancer curable?,” and so on. These questions and fears became an everyday part of my life for the next nine months.
At the beginning of September, my wife, Marti, and I met with our hematologist/oncologist at Vanderbilt University Medical Center for the first time. He spent almost two hours explaining my particular disease and his treatment plan: six 21-day cycles of intense chemotherapy. In addition, at the end of these six treatments, I would be having a stem cell transplant, which would renew my immune system with cancer-free stem cells. My chemo regime showed great promise in clinical trials—which, incidentally, weren’t completed at the National Institutes for Health until last month.
During my first month of treatment, it was necessary to identify possible stem cell donors. If I was in total remission, I would be able to use my own stem cells, but if not, a matched donor would be necessary. Transplant recipients have a fatality rate of 15 percent or more, so this was a very anxious time for us. Both of my sisters were tested to see if either was a match and could be a donor. We were overjoyed when the call came that my younger sister was a perfect match! This was the first really encouraging piece of news on our journey.
Thankfully I was spared the extensive side effects of chemo during my treatments. I believe one of the major reasons why was prayer. Yes, I had to deal with low blood counts, increased risk of infection, fatigue and other issues. I also ended up in the hospital twice during my stem cell transplant, going in both times late at night for high fevers. But overall I had little nausea, and my symptoms were not as bad as they could have been.
My first post-chemo scans were not until Nov. 23, or 11 weeks after the start of my treatment. We teach Owen students in our operations courses about managing waiting times and reducing anxiety, but I must admit it was very difficult to wait a week for the results. I felt like I had started a class, so to speak, when I was diagnosed back in August and there had been no feedback on my progress until those tests. It was as if all the weight was on the final exam.
On Nov. 30 we received news that most of my scans were clear, but there was one final result needed before I could be declared “squeaky clean.” My nurse practitioner had told me not to expect anything until the next day, but during her drive home she received the great news that my final scan was clean and called me from her car.
Having determined that I was in total remission, we proceeded with the stem cell collection and transplant. I was thankful that I was able to use my own cells and not those of my sister. The transplant occurred in March after two more rounds of chemo and a final, more intense round to kill my existing immune system. This last one was the hardest to tolerate, but we knew it was necessary for my future health.
As I write this, I have been in remission for more than a year, but doctors do not use the term “cured” for this disease. I am instead “cancer-free” and taking little medicine—a miraculous outcome given where I started in August 2009. I finally came back to Owen full time at the start of the 2010–11 school year, after missing an entire year for my treatments.
Every type of cancer is treated with its own protocol, but the journey for every patient and caregiver has similar highs, and especially lows. The hardest part for me was waiting for and receiving the initial diagnosis. Another low came when the doctor told me about the treatment. I had gone into the meeting with expectations of spending one day every three or four weeks receiving chemo (very typical for lymphoma patients), not four days in the hospital every three weeks. It also took a major change of mindset to adjust to the length of the treatment. There is no such thing as instant gratification when you get chemo—you can’t pay for a next-day cure!
I felt like I had started a class when I was diagnosed and there had been no feedback on my progress until those [post-chemo scans]. It was as if all the weight was on the final exam.
How did I cope throughout the process? It took a lot of support of family, friends, our church, colleagues and the medical community. In particular, my wife and I relied on our Christian faith and took solace in the stories of the many folks who had taken this journey before us.
We want to thank everyone for the outpouring of love we have received. Many of you visited me while I was in the hospital, sent notes through CaringBridge, mailed cards, gave me rides to my semiweekly appointments, and brought us wonderful meals. We were well cared for by the Owen community, including current and past students, faculty and staff. Alums visited from as far away as California and Montana. Another alum sent me a hat to cover my bald head. (Speaking of bald heads, it has been interesting to observe how many men starting chemo are really concerned about losing their hair!)
In addition, I would be remiss not to express our overwhelming gratitude to the Vanderbilt nursing staff on 11 North, and my nurses and doctors in the hematology and stem cell transplant clinic. My care was exceptional!
Finally a special thanks is due to Dean Jim Bradford for his continuous support during this trying season of our lives. He kept me updated on major initiatives during the year, so when I returned to the faculty full time in June 2010, I was still knowledgeable about various aspects of the school.
A fellow mantle cell “journeyer” once wrote to me about blind turns in the cancer treatment process—we know the turns are coming but have no foreknowledge of what is around the corner. Hebrews 11:1 says, “Now faith is being sure of what we hope for and certain of what we do not see.” The first set of scans, the results of the stem cell donor testing, my semiweekly blood tests, my reactions to my treatments—many areas of our journey were filled with these blind turns. We received favorable news at each turn, but that is not guaranteed.
Trials like this change one’s perspectives on what is important in life. People become more important, daily tasks much less so. Trials are used to strengthen us for future trials and enable us to assist others who are suffering. My wife and I are already reaching out to several others making this journey (including Michael and Sarah, who wrote the accompanying sidebars). Please continue to keep us in your thoughts and prayers in the coming months as we pray for a durable remission—one that lasts five, 10 or even 20 years!
Gary Scudder is the Justin Potter Professor of Operations Management and the Faculty Director of International Programs.
photo credit: Joe Howell