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One of the major developments in cancer treatment is a crop of new drugs that — for some patients — shows miraculous results.
But because the long-term prognosis with these new medications is still not clear, even after going into remission patients can be on an emotional roller coaster.
Lisa Geller of Bath, Maine, knows that well.
"I went from being at the lowest of lows to sort of the highest of highs. And that's very jarring," says the 43-year-old, who grew up in Needham.
"I went from being at the lowest of lows to sort of the highest of highs. And that's very jarring."Lisa Geller
Geller's cancer journey started in 2010. After going into remission from two bouts of Hodgkin's lymphoma, she was diagnosed with endometrial cancer that spread in her pelvis. She exhausted her treatment options with chemotherapy, radiation and surgery.
"My parents said that I was fading away," Geller recalls. "I was telling them where I wanted to be buried and what I wanted to happen with my dog, and trying to figure out how I could give them all my passcodes."
That was last May.
In June, Geller's oncologist took a leap and started her on an immunotherapy drug that's FDA-approved for a few types of cancer, but not endometrial cancer. The pharmaceutical company is paying for her treatments, which Geller says would cost about $150,000 a year out of pocket.
When Geller started getting the infusions, she had multiple tumors. "And about six weeks in, I had an exam and the doctor said they're 30 percent gone. And they literally melted away. I think in September I had a scan, and my scan came out clear."
She was stunned.
"As soon as they told me I was OK, I wanted to go out and knock the world out," Geller says. "I was ready to take the world on."
Geller had been seeing Dr. Vicki Jackson, the chief of palliative care at Massachusetts General Hospital, for help navigating life with cancer -- including pain, medication side effects, and emotional ramifications. Now she returned, cancer-free, for a session with Jackson -- and got a reality check.
"It was a reality that was much needed for me to live with, when I get a cold it's not just like anybody getting a cold, or I have to watch myself carefully. And I also have to anticipate ups and downs in my every day life," Geller explains. "So while I work — I'm a teacher, and, you know, I still have to say, 'OK, some days I can't do things everybody else does.' Vicki was really good at saying, 'Bring it back in a little bit.' "
We met with Geller and Jackson together at MGH. Here are some highlights from that conversation.
Jackson on her approach to working with Geller
"I would say there's nothing I'd love more than to see Lisa have really long-term response to this drug ... I also know, having done this work for nearly 15 years, that even when you're doing well, living with the uncertainty of what the future holds is real. And to not give voice to that actually makes it harder for people. How do we hope that this lasts for a really long time and give voice to those very natural worries, what if the medication stops working? This was such dramatic response, that it's remarkable and it's unsettling, and it makes thinking about the future, I think, really, really challenging."
Jackson on having a "box" in which to put different emotions
"Sort of open the box, let's talk about these uncertainties a little bit, those worries, give voice to them, and close the box back up. And then just think, 'What's the next trip you want to plan? Where do you want to go? ... What do I do with this time, and what does living meaningfully look like for me?' "
On adapting to life back at work and adjusting expectations
Geller: "The whole idea of compartmentalizing and what I could handle when I was back at work, and what boundaries I needed to draw, and the idea of taking care of myself. I take on a lot, and I want to do a lot. And I think I remember you saying, 'Now your high functioning is different. You're still very high functioning, but it's not maybe at the spot where you were before.' "
Jackson: "And I think why that feels so important is I'd never want you to feel like you'd failed in some way because you weren't functioning the way you did pre-cancer, because it's different now. But that doesn't mean that it's still not absolutely in the game and knocking it out of the park. But being able to help adjust those expectations and to be kind to yourself in the moment, because this is a new normal."
On managing emotional low points
Geller: "Sometimes when I'm alone and I feel alone about something, I just think there is no one out there that understands what I've really been through. One of the things cancer patients get a lot of is, 'Oh you're so strong, you're so resilient, you've got a lot of grit.' And you just want to be like, 'You have no idea.' To go to those dark places and be in that place is like nothing you could ever imagine. And then have a miracle. I hate being called a miracle, because I feel like it places a big burden. But it's unbelievable to me what my life has become."
Jackson: "I think what I love in hearing — Lisa, hearing you talk about — is you have managed to so beautifully live almost with a foot in both worlds — in a world of knowing that there is uncertainty, and that this feels like a miracle, but that you can control what you can control. And we're hoping this goes for a really long time and that we are there for you when these worries come up, because that's natural and normal. And if this treatment stops working the way it is now, we're going to figure that out too."
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This segment aired on January 30, 2017.