Dixie Josephson was 56 when she was diagnosed with metastatic ovarian cancer. She's 71 now, but the cancer is still with her.
Josephson's story is one shared by other fortunate cancer patients. Advances in treatment mean that more people like Josephson can live longer with their disease. Still, the five-year survival rate for metastatic ovarian cancer is 27 percent, putting Josephson in the minority.
And the treatments that have extended her life have also taken a toll on her and her family.
"OK, ready," she says during a visit to Women and Infants Hospital in Providence, R.I. "I'm here for an appointment. and I don't ever feel good when I come in for that. It's scary and depressing."
Her oncologist, Skip Granai, says of Josephson's treatment, "We're into uncharted waters now." He has overseen her care for the past 15 years.
Over that time, Josephson has had to make a lot of choices about how aggressively to treat her cancer. She's had surgery to remove her reproductive organs, endured 14 chemotherapy regimens and undergone two rounds of radiation.
The chemotherapy led to chronic fatigue and severe nerve pain. She lost her teeth due to infection and developed diabetes. After suffering a pulmonary embolism, she takes blood thinners to prevent another life-threatening blood clot.
"Everything I used to do has been totally limited to really being a patient," she says. "That's what I am: a professional patient."
Yet, she remains vibrant, even though this summer, after a year-and-a-half-long break from chemotherapy, Josephson got bad news: The cancer had returned and needed to be treated again.
In June, Josephson resumed chemotherapy, for the 15th time in as many years. "I absolutely experienced rage for the very first time ever in all the years," she says. "I was so angry, I was swearing like a sailor. I just couldn't believe it was coming back into my life."
Josephson knows that she's lucky to have had the choice to keep treating her cancer, even while enduring the assault on her body. Choosing to treat the cancer has meant that she has gotten to see both of her sons, Braden and Mark, get married, and four grandchildren have been born. In December, she celebrated her 50th anniversary with her husband, Barry.
The ups and downs have been hard on the family. "You can't function for 15 years with every six months, going into alert mode. You just can't physically and emotionally do that," says Mark, Josephson's younger son.
Both sons are grateful their mother has been able to be around for so long, but they have struggled with how to be supportive during what has become a marathon of treatment.
Her oncologist takes the long view. "There has been a lot of scientific progress in the treatment of cancer," Granai says. "It kind of gets sometimes obscured by the fact that we all always hope for more."
Josephson's is not the story of a cancer patient who beats cancer after intense treatment or the story of a patient who fights but quickly succumbs to the disease.
Hers is a third kind of story of a patient and family struggling to cope with cancer for the long term. It's a story that more and more families will struggle with as more and more patients survive and manage their cancer as a chronic disease.
When would Josephson decline treatment? "It would be at the point where it was pretty hopeless," she says. "But I haven't gotten to that point yet at all, not in my mind and not in reality. And I've discussed it with the kids, and I said, 'Don't you dare pull the plug on me too fast.' "
Our series is produced with member station WNYC, and with Ken Burns Presents: Cancer: The Emperor of All Maladies, which will air on PBS starting March 30. Check your local listings for broadcast times.
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