I am, of course, terrified at the thought of my own death. But I do not allow myself to get depressed. I don’t curl up in a ball or cry. That would drain precious energy that I need if I’m going to have any chance of survival.
It’s not the first time I’ve refused to give up easily. Before I began chemotherapy for breast cancer six years ago, an acquaintance called to inform me that the mastectomy would be horribly painful and the chemo would leave me so depleted that I wouldn’t be able to move. She said that she was sending me a gift that I would need. A few days later, soft, polka-dot pajamas arrived in the mail along with a note offering her best wishes and telling me to prepare to spend a lot of time in bed.
While I appreciated the gift and the wishes, she couldn’t have been more wrong.
After my breast was removed, I did stay in bed—for two or three days. By the fourth day, I was up and walking outside, eager to get back to the business of life. I’d resolved to ignore my pain and discomfort as best I could and focus on recovery. I couldn’t stand to look at the pajamas, so I gave them away.
This episode has become a running joke in our family. When I received my new diagnosis, Mirek and my children asked, “Should we send you polka-dot pajamas?” Not a chance, I thought.
I have no intention of feeling sorry for myself. Self-pity destroys my composure and sucks up my energy more than anything else.
But I also don’t realize how bad things are about to get.
In mid-March, roughly a month and a half after my neurosurgery, a series of MRIs show new small lesions—areas of abnormal tissue—in several brain regions. They are most likely tumors, although it’s hard to tell from the MRI alone.
Witek, I, Kasia, and Jake go cross-country skiing outside Boston exactly one month after brain surgery to remove the tumor in my occipital cortex.
Dr. Aizer, my radiation oncologist at the Brigham, believes that stereotactic radiosurgery (SRS) is the best option for the tumors. SRS focuses high doses of radiation onto individual tumors with the goal of withering them into oblivion. Another approach is whole-brain radiotherapy, in which the entire brain receives a somewhat lower dose of radiation. But Dr. Aizer says whole-brain radiotherapy is not the best option for melanoma because high doses of radiation are required to kill these particularly aggressive cancer cells. Anyway, I do not want to consider that sort of scorched-earth approach. Radiation is not a benign procedure, after all; its purpose is to kill cells, and it doesn’t discriminate between cancer and healthy cells. The thought of having my whole brain bathed in neuron-destroying radiation horrifies me.
For some patients with advanced brain melanoma and many brain tumors, SRS is not viable—there are just too many sites that would need high-energy radiation. This could lead to dangerous brain tissue damage, which of course worries me very much. Fortunately, at this point I have few enough tumors that the targeted approach of SRS just might work. And so I am strapped onto a gurney with a custom-made facemask to hold my head in place, and we shoot the few small tumors with precise, high-energy radiation beams in the hope that they will wilt into nothingness.
But targeted radiation therapy is not a permanent solution. If new tumors continue to appear—as they clearly are—my brain will soon be riddled with deadly lesions. The doctors will stop the radiation treatment because it will be futile; there is a limit to how much radiation a brain can withstand without permanent damage. The tumors will continue to grow, pressing on my brain and causing swelling in the tight compartment of my skull. Eventually I will fall into a coma, and finally—when the swelling squeezes the brain stem at the bottom of my skull, cutting off my ability to breathe—I will die.
I have to do something dramatic, find something cutting edge that might save my life. Without some sort of novel, more aggressive treatment, I will be dead in a matter of months. My family and I continue to read every new study that’s published in the medical journals. We visit melanoma specialists in Boston, clinicians and researchers, gathering information and analyzing their advice. Secretly, I also hold out hope that my melanoma oncologist, Dr. Hodi at Dana-Farber, will recommend some sort of phenomenal new immunotherapy treatment.
Yet when we next visit Dr. Hodi, whom I have not seen since shortly after my brain surgery, he is solemn upon hearing that I have additional brain tumors. To my disappointment, he says he’s not sure that immunotherapy is right for me at this time. Doctors don’t know yet if it’s successful in treating advanced melanoma in the brain, he explains. I suspected as much from my own research. At the end of the visit, Dr. Hodi mentions the opportunity to join a clinical trial in Boston. But I have doubts about whether to go this route, not least because of the difficulty of participating in a trial so far from home.
We really don’t know what to do next. So we continue our search and visit Dr. Keith Flaherty at Massachusetts General Hospital, a warm and knowledgeable doctor in a bow tie who spends an hour and a half explaining the new treatments for melanoma. Not only is he a specialist in targeted therapy—a promising treatment that targets specific molecules in cancer cells—but he’s an expert in treating specific mutations in melanoma. Despite Dr. Flaherty’s experience with targeted therapy, he suggests that I try immunotherapy first. He tells us about a clinical trial in immunotherapy for patients with melanoma brain tumors that is just about to open at Georgetown’s Lombardi Comprehensive Cancer Center under the direction of a highly regarded oncologist, Dr. Michael Atkins—the same oncologist my breast cancer doctor recommended when my brain tumors were discovered in
