NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan in Washington. At 22, Suleika Jaouad headed off to Paris to start her first full-time job and a life filled with promise. Just a few months later, illness forced her to return to New York to learn she had cancer, a form called acute myeloid leukemia. Cancer is never welcome at any time of life, but the onset of a life-threatening disease in the 20s presents a unique set of challenges.
Cancer, Suleika Jaouad writes in The New York Times, has forced me to pause my life at a time when my peers are just beginning theirs. She lives with a dwindling sense of independence, increasingly reliant on her parents, while she faces questions about fertility and of course about mortality.
If this is your story, call and tell us what we don't know. Our number, 800-989-8255. Email us, email@example.com. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION. Later in the program, Chinese activist Bob Fu on blind Chinese dissident Chen Guangcheng and his own story of exile.
But first, Suleika Jaouad joins us from our bureau in New York. She chronicles her experiences with cancer on The New York Times Well blog in a column called "Life, Interrupted," and it's good of you to come in today.
SULEIKA JAOUAD: Thank you, and happy to be here.
CONAN: And how are you doing?
JAOUAD: I'm doing well. I just got out of the hospital on Monday after a minor setback, and I'm feeling stronger every day.
CONAN: Minor - as I understand it, it's just a cold, but when you don't have much of an immune system because of all the chemotherapy, that can be pretty dangerous.
JAOUAD: That's right. And transplant patients, after their procedure is over, have to take pretty extreme precautions for up to a year after the initial transplant, including wearing gloves and face masks in public, not eating out and mostly staying indoors for the first few months.
CONAN: Well, we'll privately send you an email, a list of the employees at the New York bureau to avoid.
In the meantime, I wanted to ask you, there was such a sharp difference in the two flights that you describe, the first one going off to Paris, your parents wishing you well, and that new dawn of adulthood.
JAOUAD: That's right. I graduated from college in June, 2010, and a month or two later, I left for Paris to start my first job out of college. And, you know, it was a time of hope and excitement. I had just gotten my first apartment. I was thrilled to be in France and really excited to embark on this new phase of my life.
And about four or five months after I arrived in Paris, I started feeling increasingly tired. And I'd find myself sitting at work, wondering if there was a place in the office that I could find to take a nap, and after a few weeks of this, my symptoms only worsened, and I started getting infections, everything from kidney infections to respiratory infections, which landed me in the hospital for a week and in and out of the emergency room.
But because of my age and because at the time my blood count didn't seem too abnormal, my doctors decided to send me back home to the U.S. for a month, with orders to rest, and a diagnosis of something called burnout syndrome, which is a very French diagnosis that doesn't exist in the U.S.
So I went home in April of 2011 with the intention of spending a few weeks at home and spending time with my parents, whom I hadn't seen since I'd left for Paris, but really without having any inkling that there was anything more serious going on.
And it was only after I came home, and I started feeling even more sick, that I began to worry that there was something seriously wrong.
CONAN: You looked up your symptoms on various websites, and one of the words that popped up was cancer.
JAOUAD: That's right. I typed my symptoms into Google, which is something doctors caution you not to do, and I found, among the hundreds of possible diagnoses, the word leukemia caught my eye. And I remember calling my boyfriend, Seamus, in Paris, and saying I think I have leukemia. And of course his response was that's totally ridiculous. You know, people look up their symptoms online all the time and find all sorts of catastrophic results and, you know, and there's absolutely no basis for you.
CONAN: Well, he was totally right, but sadly so were you.
JAOUAD: Right, unfortunately. And it was about a week later that I went in to see the hematologist that I'd been seeing for about a month, and he had decided to refer me to an infectious disease specialist and thought that there wasn't much more he could do for me but decided to do a precautionary bone marrow test. And, you know, he told me I'm doing this merely as a precaution because other doctors will ask you if you've had a bone marrow biopsy, and I just want you to be able to tell them that, yes, you have and that it was clear.
So I did the bone marrow biopsy but really did not expect to hear anything significant from him with regards to the results.
CONAN: But then the hammer dropped, and that is when world changed.
JAOUAD: That's right. I was on my way to New York City with my mother, and we were on the Amtrak train from Upstate New York, and a nurse called my mother's cell phone, and she said we have the results, and we found something. We can't tell you what it is, but you need to return immediately. And my mother said, you know, well, we're just arriving to New York. Can we come back in later this afternoon? And she said no, you have to turn around right away and come back. And that's when we knew that something was seriously wrong.
And it was certainly the longest train ride back of my life.
CONAN: Amtrak has its problems, but that wasn't one of them.
CONAN: You have been careful to write in your blog, in The New York Times, that of course a lot of people have terrible diseases and your terrible disease is no worse than a lot of other people's, but there are special circumstances that you wrote about of having this disease in your 20s, at that moment of that blossoming moment.
JAOUAD: Right. I think for young adults, having cancer presents a unique set of challenges, specifically because it's a period in your life where everything is about establishing your independence. You know, everything is about trying to make it on your own two feet, trying to live independently from your parents. And unfortunately with the onset of a life-threatening illness, you know, those circumstances take away a lot of those goals or take away a lot of those things that you've spent your life and certainly your college career working towards.
So the first thing for me was realizing that I wasn't back home just for a vacation but that I was going to be there, living in my childhood bedroom, and that I was never going back to Paris and that I would have to ask friends to pack up all of my belongings and send them to me and that I wouldn't be able to return to work or do any of the, quote-unquote, "normal things" that people do when they've just graduated from college.
What I wasn't prepared for were the medical challenges that face young adults with cancer, specifically fertility in my case. That was the biggest issue that came up, and it came up right away. I received my diagnosis. No one mentioned fertility to me, but a few days later, as I was once again Googling information about my disease, I realized that the chemotherapy treatments that I was scheduled to receive in one week were most likely going to make me infertile.
And that came to me as a huge shock. Cancer didn't have to be permanent; in my case, I'm lucky that my cancer is curable, but infertility was. And it was the first time I realized that cancer wasn't just something seasonal, it wasn't something that was going to pass with the summer. It was something that was going to change my life forever.
CONAN: We're talking with Suleika Jaouad about the unique challenges of facing a life-threatening disease in her 20s. If this is your story, give us a call, 800-989-8255. Email us, firstname.lastname@example.org. And let's get Cathy(ph) on the line, Cathy's calling us from Portland.
CONAN: Hi, Cathy.
CATHY: On the other side of dealing with a life-threatening illness, my husband had a stroke at 27, back in 2010.
CONAN: I'm so sorry.
CATHY: And he - it took hours to figure out, you know, even what it was because they're like at 27, you don't have a stroke. So they were adamant it was drug overdose. And I'm like no, it's not. And so it's been about a year and a half now, and he is on complete disability. He can't use the right side of his body. But thankfully, he has all of his memories and whatnot.
And the stroke was actually caused by dissected carotid arteries in the front of his neck, which are now completely blocked. So the only blood flow is getting to his brain from the back of the neck. And so in addition to the stroke, we have to deal with the possibility that he could have another, or one could completely be blocked again, and so, you know, he's 29 now, and we're - can't buy a house because if he dies I don't want to have to try and worry about planning a funeral and selling the house and all of this.
And we have a three-year-old daughter who chances are the three of us will never get to go to Disney World or any of that. And it, you know, it completely changes all of your plans and your dreams for the future when we got married back in 2005.
CATHY: Yeah, so I just want to say your point about misdiagnosis is a really good one because I think it's something that cancer patients, but just young adults in general facing life-threatening conditions struggle with. I know that in my experience, I was diagnosed, like I said, with burnout syndrome initially, and when I returned to the U.S., and I explained to my doctors that I was feeling extremely tired, and doctors suggested that I was depressed, and it was incredibly frustrating, and it felt like in retrospect...
(Unintelligible) listening to you.
JAOUAD: In retrospect, it was difficult for doctors to understand or - it seemed like doctors didn't want to consider cancer a possibility because I was an otherwise perfectly healthy 22-year-old girl, and why put her through a bone marrow biopsy.
CONAN: Cathy, we wish you and your family the best of luck.
CATHY: Thank you very much.
CONAN: Thanks very much for your call. We're talking with Suleika Jaouad, who is chronicling her journey with leukemia for The New York Times. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
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CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. Our guest today, Suleika Jaouad, wrote in The New York Times: Being a young adult with cancer can make a person feel like a misfit. I'm usually the youngest patient on the floor, she wrote. In fact, I'm the youngest person my doctor has ever treated with this disease.
Where cancer is concerned, it's safe to say there's no such thing as good timing, but having a life-threatening illness in your 20s carries a special set of psychological and social challenges. It defies our very definition of what ought to be. Youth and health are supposed to be synonymous.
She's sharing her experiences with cancer on the Well blog at The New York Times. We've posted a link to her columns, "Life, Interrupted," at our website. Go to npr.org. Click on TALK OF THE NATION. And if this is your story, call and tell us what don't we know, 800-989-8255. Email email@example.com. And again you can go to the website, npr.org, and click on TALK OF THE NATION.
Let's get another caller in, this is Seth, and Seth calling from Little Rock.
CONAN: Hi, Seth.
JAOUAD: Hi, Seth.
SETH: I just wanted to say, just listening to your story, it's almost like you've been reading my mind. I was diagnosed with stage 4 Hodgkin's lymphoma in November of 2011, and I was a month to the day from completing my master's degree at George Washington University. And just hearing your story, it's really hitting home for me.
I had to leave school. I came back here to Arkansas to undergo chemotherapy, actually finished my treatment this past Friday, and hopefully I'm just going to start to get back on with my life, I hope.
CONAN: How are you feeling, Seth?
SETH: I feel - today it's a pretty good day. You know, it's been a really rough six months, and I think the hardest thing has just been watching all of my peers, you know, graduate with their degrees and go off and get jobs and things. I - just like your caller, I was actually working an internship in Brazil when I started to get sick, and one of the first things I did when I got back to America was go to the doctor.
I had a lump, and they said oh, it's just a lymph node. You'll be fine in a few weeks. And a few months later, it was stage 4 cancer. So...
CONAN: Stage 4 is awfully serious, Seth.
SETH: Yeah, it was advanced. I had large tumors in my chest, under my shoulder. It had spread throughout my lungs and into my bone marrow.
CONAN: What's the prognosis?
SETH: The prognosis, well, I guess I just finished chemotherapy on Friday, after six months. I'm going to have a six-week break. They're going to test me again, do another PET scan. But we're pretty sure that after that six-week break, I'll be cancer-free.
CONAN: Well, that's great, congratulations with that. I mean, premature perhaps but congratulations. Nevertheless, that moment of seeing your life go up in smoke, that's got to be stunning.
SETH: Yeah, the thing that's really the biggest - the hardest thing for me is just now, you know, hopefully this is over for me. But I still feel like I don't know how to pick up where I left off, almost. I'm actually graduating Friday with my master's finally, and I don't know - I feel like I've lost a lot of momentum, you know, that most people my age have in life, and I don't know how quite to get it back, I guess.
CONAN: Suleika Jaouad, you've got to have some sympathy here.
JAOUAD: Yeah, I can really empathize with that. I think for a long time for me, it felt like my life was on pause, and I was hoping that as soon as I was better, I'd be able to go back to where I was and pick up exactly where I left off. And when my first treatment didn't work at all, I started to realize that I kind of - that my life wasn't going to go back to normal, and if and when I get better, things were always going to be different and that I needed to make the best of that and to start living my life now, even though I was sick, without waiting for the day that, you know, I had a clear bone marrow biopsy result and could be declared in remission.
So I can really understand that. And congratulations on your graduation.
SETH: Thank you.
CONAN: Good luck, Seth.
SETH: Thanks so much.
CONAN: In fact, you wrote about a new birth, in a way, the day you did have that bone marrow transplant.
JAOUAD: That's right. The bone marrow transplant is often considered a rebirth. The day of the transplant is called Day Zero. They actually also call it your second birthday. Some people celebrate it. I have to say, though, the actual transplant is pretty anticlimactic. It's just a bag of stem cells hanging from an IV that go into your arm. So it's really no different to a blood transfusion. I was expecting something much more dramatic.
CONAN: Your brother was your donor.
JAOUAD: That's right, my younger brother Adam, who's also graduating this weekend from college, was my donor. So in some ways, we were both graduating to new stages in our lives.
CONAN: Well, we wish him the best, and congratulations on his graduation. Here's an email question we have from Kate in Centennial, Colorado: Was it possible for you to have your eggs harvested before the cancer treatment? Was this mentioned as a possibility by your doctors?
JAOUAD: So it wasn't brought up by my doctors. Like I mentioned, I found out that my treatments were going to make me infertile online, and - but when I brought it up with my doctors, they were willing to discuss it. I think for some cancer patients, time is of the essence. So fertility treatments isn't a possibility if they have to move straight into surgery or into their chemotherapy treatments.
So we had a debate with my doctors and my family as to if it was OK for me to delay my treatments and if this was something that was really important to me, which at the age of 22 is a really difficult question to answer. Of course, I've kind of always assumed that someday I would have a family, but children really weren't on my mind at the time.
So it was awkward territory, to put it lightly. And my boyfriend, who my parents had never met until two days after my diagnosis, flew in from Paris.
CONAN: Talking about awkward, yes.
JAOUAD: Right, and we had to decide between freezing embryos, which is the more successful option, has a higher rate of success, and freezing eggs. So talk about awkward dinner conversations. I had to decide with my parents and my boyfriend if I wanted to fertilize my eggs with his sperm or just choose my own eggs.
So this is a decision that I didn't have very long to make.
CONAN: You couldn't wait until Thanksgiving to bring this up at the table, right.
JAOUAD: Right, right, and so yeah, not to mention that it's an unconventional topic to bring up, you know, in the first six months of meeting someone. And we actually decided on the embryos, but a social worker at the fertility clinic advised me against it for legal reasons and future, you know, obstacles that could arise.
So in the end I actually did go with the eggs. I'm happy to say I have about 10 eggs somewhere in a freezer in Midtown Manhattan. So I don't know if that's comforting, or I'm not sure. But I guess it's something that I'll deal with when I'm ready to. But I feel very fortunate to have had the opportunity to even undergo the fertility treatments. I know a lot of cancer patients either aren't informed by their doctors of the possibility of doing fertility treatments or don't have time to do so. So I feel very lucky.
CONAN: Let's go next to Dan, Dan with us from Birmingham.
DAN: Yes, I just turned on the radio, and I heard somebody telling my story from about 18 years ago, when I was 21 years old and diagnosed with a rare form of Ewing's sarcoma. And it was just - it brought back an absolute flood of memories and emotions and particularly thinking about how, you know, one man went into Sloan-Kettering, and another guy came completely out a completely different person and just trying to - at first wanting to integrate myself back into the - you know, kind of take up where I'd left off.
You know, I'd left school, gone back to New York and then came back to school to finish off, and, you know, my friends didn't really know what to do. I mean, it was a concept of having a life-threatening disease of that magnitude that they didn't really know how to cope with. And, you know, unfortunately, you know, the true friends kind of stick with you, and the other ones just sort of fall to the wayside.
But it leaves you kind of hanging and twisting in the wind, and I think, you know, all this time later that really the one reality is that the - you really can't pick up your life from where you were. You have to kind of reinvent your life and, you know, make the most of the time that's given to you coming out of the end of this.
But it was just, it was absolutely uncanny. It completely caught me off-guard when I get on the car and turn on NPR, and I'm listening to this story, and it's absolutely the exact - almost the exact same sort of social and personal and overall overwhelming circumstances.
CONAN: Well, Dan, I guess the best part is this was 18 years ago.
DAN: Yes, it was.
CONAN: Yeah, it was interesting, Suleika Jaouad, in one of your blogs, you describe how you reacted when a friend of yours in college came down with testicular cancer.
JAOUAD: That's right. So I think, for me, the social awkwardness of cancer is something that really caught me off guard. I was, you know, prepared by the nurses for the side effects of the chemotherapy, et cetera. But no one talked to me about how it was going to affect my friendships and how this is going to change my life socially.
And I think another aspect of being a young adult with cancer is that most of your friends, hopefully, you know, have never had to experience life-threatening illnesses themselves. I certainly, amongst my friends from college, was the first and the only person to have been diagnosed with cancer and have had a bone marrow transplant. So a lot of my friends had no idea how to respond and found it really difficult not just to find the right words, but sometimes to find any words at all.
And I was shocked to discover that although many of my friends were truly wonderful and supportive, some suddenly became distant or weren't present at all when I was diagnosed. And for my first month or two in the hospital, I felt really angry and really hurt, and I didn't quite know how to interpret their reactions. And at the time I understood them as, you know, maybe they don't care, maybe they're too busy, et cetera, et cetera.
And it took me a few months - until I saw this friend of mine from - a childhood friend of mine who'd been diagnosed with Stage III testicular cancer when I had been 18 years old and a freshman in college - to realize why it is that some people react so strangely to a cancer diagnosis. And in seeing this friend, I remembered my own reaction, and I remembered feeling so afraid when he called me and shared his diagnosis with me.
And following that phone call, I, you know, I sat down and tried to compose an email, and I just didn't feel like I had the right words. I couldn't find the perfect word, so I said nothing. And I wasn't there for him at all during his cancer treatment. And I tried to remember that, and it's helped me forgive and understand the reactions of certain friends in my life and to realize that generally it's not that people don't care. It's that they're afraid or that they don't know what to say.
But one thing I've learned to tell my friends is that you don't have to find the perfect words, but you do have to say something. And I think one of the highlights of this year has been apologizing to my friend with testicular cancer. He understood, and he said I know that you understand now, and was very understanding.
CONAN: Dan, thanks very much. You're clear now?
DAN: I am, yeah, 18 years.
DAN: Thank you.
CONAN: We're talking with Suleika Jaouad, who's chronicling her journey with leukemia for The New York Times in a weekly column called Life Interrupted on The New York Times Well blog. You're listening to TALK OF THE NATION from NPR News.
Daniel is on the line, Daniel calling us from Charlottesville.
DANIEL: Yeah. I just wanted to, first of all, send my best wishes to your guest. Her story had so many parallels to the history that my wife had. Actually, she was a French national that came to United States in '81. And after 10 years she had a recurrence of ovarian cancer. And I think the thing that stands out in my mind and memory is just the implosion of self that she went through when she was beginning her chemotherapy treatment. You know, the loss of her hair (unintelligible) many of the physical side effects just absolutely crushed her in terms of her feeling of femininity and, you know, her - just her self-image. It was truly devastating.
And the journey that your guest has been on is pretty remarkable, and it's probably a good occasion to recognize the advances that have been made, because my wife at the time began a chemotherapy regimen and she had autologous bone marrow transplant. And at least for the ovarian cancer that she had, it turned out to be, I guess, invalidated as a - an effective course of treatment. So in any case, I wish her the best of luck, and it sounds like she's got a bright future ahead of her, and she's been through quite a personal journey.
CONAN: Daniel, from the tone of your voice and from what we know about ovarian cancer, it sounds like your wife didn't make it.
DANIEL: I'm sorry?
CONAN: It sounds like your wife didn't make it.
DANIEL: She didn't. She had her first cancer when she was 16, then had a complete hysterectomy, and she was in remission for about 16 years. And then when it came back, she had a bone marrow transplant, and that basically bought her about a year of additional time. But it just - when it came back, it was just too aggressive. And I don't know. The chemo regimens just were extremely experimental. She went back to France, where she had her original oncologist. They did everything they could. It's just (unintelligible).
CONAN: A terrible disease. We're so sorry for your loss, Daniel.
DANIEL: Oh, well, thank you.
CONAN: Suleika Jaouad, we just have a few seconds left. Are you facing mortality at this point?
JAOUAD: It's certainly something that I think about, that I try to talk openly about with my family. I wouldn't say it's something that I fixate on. I feel very hopeful for the future. But I've definitely been humbled by everything that I've been through. I don't think of myself as invincible or immortal anymore.
CONAN: I'll bet you'll get back to Paris.
JAOUAD: I hope so.
CONAN: Suleika Jaouad, thank you so much. And I know that all of those responding to your blog and those who've listened to you on the radio today have a new understanding. Appreciate it.
JAOUAD: Thank you so much. It's an honor to be here.
CONAN: Thank you very much. Suleika Jaouad joined us from our bureau in New York. Her weekly column, Life Interrupted, runs Thursdays on The New Times Well blog. Stay with us. When we come back, Chinese activist Bob Fu will be us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.