A Woman's Journey From Cancer Diagnosis To 'Professional Patient'
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."
Find other stories in the Living Cancer series at WNYC.org.
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.
Barry Josephson (from left), Dixie Josephson, Dr. Skip Granai at Women and Infants Hospital in Providence, R.I., in September.
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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Transcript
AUDIE CORNISH, HOST:
Advances in cancer treatments have turned some forms of the disease into a chronic condition, allowing patients to live longer lives. This the focus of today's story in our series Living Cancer, produced with member station WNYC. Even when treatment is successful, patients often face years of protracted therapy and complications, and that can take a toll on them and their families. Reporter Paige Cowett recently spent time with a woman in Rhode Island. She has faced many of these challenges after a diagnosis of ovarian cancer 15 years ago.
PAIGE COWETT, BYLINE: In 2000, Dixie Josephson was diagnosed with stage-four ovarian cancer. And ever since, she's been a regular at the Women and Infants Hospital in Providence, R.I.
DIXIE JOSEPHSON: OK, ready. I'm here for an appointment, and I don't ever feel good when I come in for that. It's scary, and it's depressing.
COWETT: Even so, Dixie can't help but be vibrant, and she laughs when she tells me her age, 71.
D. JOSEPHSON: I don't believe that to be accurate. Someone made a mistake. (Laughter).
COWETT: A generation ago, she might not have lasted with metastatic cancer for more than a couple years, but Dixie has been going in for these appointments for 15 years.
D. JOSEPHSON: But by the time I get upstairs, I - you know, I'm OK. I mean I pretend to be OK or I am OK. I'm not sure which.
COWETT: She's endured a lot - an incredibly invasive debulking surgery where they removed both ovaries and fallopian tubes and then 14 chemo regimens and two rounds of radiation - treatments that control the cancer for a while, and she'll get to go off the chemo for months, maybe a year at a time, but eventually the cancer wakes back up and starts growing again. The disease is kept at bay, but it's never gone.
D. JOSEPHSON: I don't explain my story to very many people. Lots of people don't want to know.
COWETT: Which means that for 15 years, she's been a cancer patient undercover.
D. JOSEPHSON: People weren't quite sure how to take because I looked OK. Once I got used to using makeup for eyebrows and eyelashes and wigs, they said, wow, you look great. You know, I do look fine, but I happen to be really sick.
COWETT: It's not the story we're used to hearing. She didn't beat her cancer after intense treatment, and she didn't fight it but quickly succumb. It's a third kind of story. Dixie has been living with chronic cancer for all these years, and it's taken a huge toll.
D. JOSEPHSON: So it seems like I have a doctor for every body part.
COWETT: She has a severe neuropathy, chronic fatigue.
D. JOSEPHSON: I had to lose almost all my teeth.
COWETT: And has to be on blood thinners.
D. JOSEPHSON: I developed diabetes. I got skin cancer.
COWETT: And it's meant that she doesn't drive, and had to stop working as a social worker, a job she loved.
D. JOSEPHSON: Everything I used to do has been totally limited to, really, being a patient. That's what I am - a professional patient.
COWETT: Her husband, Barry, has been with her the whole time, to every single chemo appointment for 15 years.
BARRY JOSEPHSON: I don't remember before. This has, you know, been my life.
COWETT: People ask him, how could you do it?
B. JOSEPHSON: We're going to be married five - 50 years - 550 years, and I would rather be with my wife sick than with anybody else well. I mean, she's got a verve and an energy and a love. She sees life in a way that makes it color rather than black and white for me.
COWETT: Last summer after a long holiday from chemo, Dixie and Barry got bad news. The cancer had woken up again.
D. JOSEPHSON: I absolutely experienced rage for the very first time ever in all the years. I was so angry. I was swearing like a sailor. I just couldn't believe it was coming back into my life.
BETSY RICCI: Hello, hello.
D. JOSEPHSON: Who could it be? How are you?
RICCI: Good to see you.
D. JOSEPHSON: Always good to see you.
RICCI: Thank you. You look fabulous.
D. JOSEPHSON: Thank you. I love your hair.
COWETT: Since the cancer started up again, it means she's back at the cancer center with her nurse practitioner, Betsy Ricci, and her doctor, Skip Granai, a team she's been with since the very beginning. They are so close, they celebrated Dixie's 70th birthday together last year.
RICCI: How are you feeling?
D. JOSEPHSON: I feel pretty good...
RICCI: Wonderful.
D. JOSEPHSON: ...Except for the anxiety I always feel.
RICCI: Yup.
D. JOSEPHSON: I got up this morning, and I was not cheerful. (Laughter).
COWETT: Dixie went back on Hexalin, an oral chemotherapy drug she was on for about a year and a half back in 2006.
RICCI: We feel that the oral chemotherapy is working. How we're monitoring that is with the CA 125 blood test, which dropped significantly after the first cycle, and this past time it stayed stable. And it was two points different.
D. JOSEPHSON: I know, but it's so depressing.
RICCI: Yes.
D. JOSEPHSON: It's ridiculous it's only two points different. When I heard it went up two points, I didn't like it.
RICCI: Yes. We can say things are stable. The cancer is...
D. JOSEPHSON: Yes, and I know that intellectually.
RICCI: Yes. But emotionally...
D. JOSEPHSON: Right.
RICCI: You're the one hearing that the blood test changed by two points.
D. JOSEPHSON: Right.
RICCI: And it's perfectly...
D. JOSEPHSON: Usually I know that it's nothing, but I just want to know that it'll work.
RICCI: Yes.
SKIP GRANAI: We're into uncharted waters now. Would we do it six times? Some people would stay on it longer than that.
COWETT: Doctor Skip Granai.
GRANAI: There are many instances where treating it like a chronic disease creates the outcome that Dixie is experiencing.
COWETT: The outcome being, she's alive 15 years after she was first diagnosed. Granai is the one who's guided Dixie through treatment decisions all these years, like how long to stay on the chemo and when to give it a rest.
GRANAI: There has been a lot of scientific progress in the treatment of cancer. It kind of gets, sometimes, obscured by the fact that we always hope for more.
D. JOSEPHSON: I know you don't like this, but I honestly believe you saved my life. Oh, stop. Don't even laugh.
GRANAI: Well, I appreciate those words, and it's not false modesty to say that you're wrong. Some of this is science, but then sooner or later, we run out of scientific answers. And that's when it gets a little bit individual, subjective, uncertain. Ultimately, there is a - there will come a point where there isn't any information, and then people have to make their best choices.
COWETT: Choices that Barry and Dixie know that so many others don't get to make. They feel lucky. In the years since her diagnosis, both of their sons, Braden and Mark, got married and four grandchildren were born, but it's been a struggle for the whole family to support Dixie for what has become a marathon, not just a sprint.
D. JOSEPHSON: It's extremely difficult for them to be with me because they cannot bear seeing me the way I am, even though I said I look good. I do. But they know how bad it really is.
MARK JOSEPHSON: You can't function for 15 years with every six months going into alert mode. You just can't physically and emotionally do that.
COWETT: This is Mark, the younger of her two sons.
M. JOSEPHSON: My mom really is one of the smartest, funniest people I've ever met - whip smart, brilliant sense of humor. I aspire to have that special personality and qualities that my mom has. Those are harder to see now, but she's my mom. And as bad and as tough as it is to have a mom with this kind of chronic cancer for as long as she's had it, like, I have a mom. I'm really lucky and really happy that my mom is around, whereas if she was diagnosed 20 years ago, she might not be.
COWETT: Now every time Dixie sees the oncologist, she's faced with a choice about whether to keep saying yes to treatment. So I asked her.
Under what circumstances would you stop trying to treat the cancer?
D. JOSEPHSON: That's really what my brother wanted to know. At what point would I say no? And it would be the point where it was pretty hopeless, 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 - I said, don't you dare pull the plug on me too fast - OK? - 'cause you never know (laughter) who's going to wake up or not.
COWETT: Dixie told me she'd keep going with the treatments as long as there's hope and as long as she's able to enjoy herself and all the people in her life. For NPR News, I'm Paige Cowett in Providence, R.I.
CORNISH: Our series is produced with WNYC and with "Ken Burns Presents Cancer: The Emperor Of All Maladies." It airs on PBS stations starting next week. Transcript provided by NPR, Copyright NPR.
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