Just months after moving to Paris to start her first full-time job, Suleika Jaouad was diagnosed with cancer — acute myeloid leukemia. Like many who face life-threatening illnesses in their 20s, she is coping with a dwindling sense of independence — increasingly relying on her parents for care — while simultaneously dealing with the very adult issues of mortality, infertility and disease.
Jaouad is chronicling her experiences with cancer for the New York Times Well blog in a column called "Life, Interrupted." "Cancer, she writes, "has forced me to pause my life at a time when my peers are just beginning theirs."
She talks with NPR's Neal Conan about the unique challenges that come along with facing a life-threatening illness in your 20s.
On what makes having cancer in your 20s unique
"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 things that you've spent your life and certainly your college career working toward. ...
"What I wasn't prepared for were the medical challenges that face young adults with cancer, specifically fertility in my case. ... 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."
On making decisions about her fertility at 22
"We had a debate with my doctors and my family as to if it was OK for me to delay my treatments and if [future fertility] 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. ... 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. ... 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."
On the "social awkwardness" of cancer
"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. ... 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 it took me a few months, until I saw ... a childhood friend of mine who'd been diagnosed with stage three 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.' "
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