“It can work,” Dr. Atkins promises. “Absolutely, I have seen it work.”
We cling to his confidence. He seems so certain.
I will have four treatments, one every three weeks, starting on April 16—just two weeks away. But first, I need to jump through a few more hoops, including a dentist’s appointment, to make sure I don’t have any pressing dental problems, and a series of blood tests. Most important, I need another brain MRI, to make sure I have no brain tumors besides the ones that have already been radiated. If there are any new brain tumors, I can’t join the clinical trial, at least not right away.
This trial is not for patients with active, untreated brain tumors, Dr. Atkins tells me. He doesn’t explain further, but later, in reading the scientific literature, I learn that it’s essential that there are no active tumors, meaning ones that haven’t yet been radiated. Active brain tumors subjected to immunotherapy can become inflamed, and the patient may suffer serious brain swelling, which can be deadly. At this early phase in the clinical trial, when not much is known about the response of active brain tumors to immunotherapy, it’s just too dangerous to try this treatment on anyone with tumors that are still growing.
We drive home, elated and hopeful. As we pass the supermarket construction site, I realize I am desperate to see it completed. I cut a silent deal with my brain, begging it to keep any new tumors at bay so I can get the immunotherapy infusions—my best shot at survival, and perhaps my only one.
Stay clean, stay clean, I tell it. It’s our only hope.
A week later, a few days before the trial is to begin, I lie as still as a corpse for the most important MRI ever. I’m deeply anxious about what it might show, terrified that my last chance for life will be snatched away.
The next day, I get a phone call at work. It’s the nurse from Dr. Atkins’s office.
“What did the MRI show? Any new tumors? Is everything okay?”
“Yeah, it’s okay,” she says, her tone less excited than I think it should be. “We’ll see you on April sixteenth.”
I am ecstatic.
I undergo a full-body CT scan, a requirement before starting the trial, and it shows three small tumors in my lung. But we aren’t alarmed. Tumors in the rest of the body are to be expected with metastatic melanoma, since melanoma cells traveling in the bloodstream often invade other organs. These lung tumors are less dangerous and easier to treat than brain tumors, and the immunotherapy will likely kill them. Even if they initially swell due to the treatment, they won’t cause the same devastation as inflamed tumors in the brain, so their presence does not disqualify me from the clinical trial. Mirek and I are thrilled to get that news.
But Lance Armstrong’s advice rings loudly. I decide to get a second opinion on the new MRI of my brain. I really like and feel a connection with Dr. Aizer, the radiation oncologist in Boston. So I e-mail him, tell him about our recent trip to Hawaii, mention that I’m about to enter the clinical immunotherapy trial, and ask if he’ll review the MRI.
He writes back to say that he’s glad I’m so physically active. “I wish more of my patients could do even a tenth of what you routinely do from an activity perspective,” he says. He adds that he thinks the combination-drug immunotherapy “sounds like a great initial plan.” He says he is happy to review my MRI and future scans. I FedEx him a CD of the MRI.
A couple of days later, on Wednesday, April 15, I’m at the hospital very early in the morning for a blood test, my last remaining pretrial exam. If everything is in order, as I’m sure it will be, I’ll be cleared for the first immunotherapy infusion, which is scheduled for tomorrow.
At 6:22 a.m., I get an e-mail from Dr. Aizer.
Hi, Dr. Lipska, Do you have a moment to touch base over the phone today by chance? I want to check in with you. Best, Ayal
This kind of e-mail can’t be good. I step outside to call him. The cherry trees are in full blossom, white clouds are rolling by in the blue sky, and it’s so early that the sun is throwing long shadows across the lawn. I shiver from the cold and worry.
“Dr. Lipska, I am so sorry,” he tells me. “I see new tumors in your brain. They are very small but you should get them radiated before immunotherapy.”
I can’t believe what he’s saying.
“No, I can’t, I can’t wait!” I insist. “I’m going in for my first infusion tomorrow! There’s no time for radiation—they’ll kick me out of the trial! Dr. Atkins says I’m fine. He doesn’t see anything on the scan. Are you sure?”
“The tumors are very small. They could easily be missed, but they’re definitely there,” he says. “One is in the frontal cortex, where it could be dangerous for your intellect and cognition, as you know so well, Dr. Lipska. You really should get them treated before you start immunotherapy.”
“I can’t!” I repeat. “They will kick me out of the protocol!”
For half an hour, he tries to convince me to get radiation. He repeats that the tumor in the frontal cortex could be especially problematic. Without radiation, it will almost certainly grow, and, if subjected to immunotherapy, it could also become inflamed, causing my brain to swell uncontrollably. It could quickly begin to seriously damage all the highest functions of my mind: my ability to think and remember, to express emotion, to understand language. In short, it could cut off all the things that make me human. If it causes too much swelling, it could even kill me.
“But of course, another
