Hope in the face of long odds

In my job, I write about cancer and the research surrounding it almost every day. I use descriptors like hope, potential, breakthrough, sometimes even cure, to describe the Hutchinson Center’s work. We don’t toss around such positive language lightly. If anything, cancer researchers are the most guarded optimists I’ve ever met. So when they say a new treatment or approach holds promise, I pay attention and share their enthusiasm.

After interviewing many researchers making such amazing strides, I’d like to believe we’re getting this cancer cure business wrapped up, that an end to all of the suffering associated with malignancies is at hand. But a few hours last week reminded me that cancer remains a formidable foe.

I sat in with my sister-in-law, Jenny, and her husband as they tried to wrap their heads around treatment alternatives with a Seattle Cancer Care Alliance oncologist. Jenny, an ebullient and creative 57-year-old with a wry sense of humor, was diagnosed with an aggressive form of multiple myeloma last fall. There is no cure for this cancer of the blood plasma cells.

Until recently, Jenny’s myeloma was responding well to chemotherapy, and as chemo goes, it wasn’t too bad—she didn’t lose her hair or feel particularly sick, just fatigued. But her cancer has what the doctor termed “bad players,” chromosomal abnormalities associated with a poor prognosis. While this type of myeloma can be reined in for a time, it comes roaring back again and again until treatment options are exhausted.

All three of us took notes in a vain attempt to make sense of the bleak news, medical lingo and unfavorable odds. But despite the slightly greater distance I have from this situation and my long experience in interviewing people and carefully recording what they say, even I didn’t capture the conversation perfectly. It’s hard to absorb, despair and question simultaneously.

The bottle of hand sanitizer and box of Kleenex in the middle of the table seemed to speak of the near future: guard against infection and guard your optimism—we’ve got a bumpy, uncertain road ahead. The world is an unsafe place without an immune system. Tears may not solve anything, but they’re awfully hard to hold back when all you want to do is live.

We talked with the doctor for over three hours (can you even imagine three hours of face time with a doctor nowadays?). She gave Jenny two options. If the goal is to live for today with as few side effects as possible, Jenny could have an autologous transplant (a transplant of her own stem cells, harvested when they’re as cancer-free as possible) and maintenance chemotherapy. The odds of her being disease-free in five years with this route? Zero. If her aim was for many more tomorrows, the recommended treatment is an autologous transplant followed by a reduced intensity allogeneic transplant (using cells from an unrelated donor) and maintenance chemotherapy. About 20 percent to 25 percent of patients in the latter group are cancer-free in five years.

Long odds. Tough, grueling treatments. Complete disruption of everyday life. The strong possibility of fevers, infections, and that the donor cells will fight Jenny’s cells, a common transplant side effect called graft-vs.-host disease that can have lethal consequences or affect long-term quality of life.

Throughout the overwhelming afternoon, I was amazed at my sister-in-law’s strength. Her lower lip trembled occasionally, but she kept asking questions, kept looking for some reassurances to cling to.

As we said goodbye that evening, Jenny said, “What do I tell people when they ask how it went in Seattle? What’s my sound bite?” I replied, “Well, I think you tell people, ‘The odds are tough, but I’m not a statistic. I’m an individual and I’m going to fight this the best I can.’”

I felt privileged to be part of such a difficult and intimate doctor-patient conversation. I am honored to be a small, supportive presence in the murky waters of disease and the limits of medicine. I am heartened by the knowledge that our docs do transplants better than anywhere else in the world.

But it was sobering to remember that as far as we’ve come in battling cancer, we have so very far to go. It’s why research, clinical trials and participants in such trials are so critical. There are so many questions to answer, so many opportunities to do it better, to increase odds. To offer hope for cancer-free futures.

By Colleen Steelquist
Quest science writer