It was just about a year ago when Well readers first met Suleika Jaouad, who at 22 was facing a cancer diagnosis and a potentially lifesaving bone marrow transplant. Her first column "Life, Interrupted: Facing Cancer in Your 20s," captivated readers and transformed Ms. Jaouad from an unknown writer to a national advocate for young people with cancer.
Although Ms. Jaouad is now cancer-free, she is still undergoing a yearlong chemotherapy regimen. She recently took some time to talk about her writing schedule, the challenges of being a "cancerlebrity," and a new love in her life, Oscar, a rescue dog. Here's our conversation.
Q.
Can you start by giving us an update on your health and treatment?
A.
I just celebrated my first post-transplant anniversary, which was really exciting. I have mixed emotions about it, because the same day I celebrated my "transplanniversary," which is what I call it, I had to go into chemo that morning. As much progress as I've made and as grateful as I feel to be here today, cancer is still part of my day-to-day life in a big way.
Q.
Where are you in treatment right now?
A.
I've completed eight cycles of chemotherapy since my transplant. I have about four more left. I'm beginning to see the light at the end of the tunnel. I'm kind of up and down. Because these treatments are cumulative, I have been feeling more and more exhausted by them. Luckily, I have only about four more, and then it looks like I'll be done, hopefully forever.
Q.
Looking back, you've had so much professional success in the past year with your writing. Is it hard to reconcile that your success coincided with having cancer?
A.
It's confusing sometimes. I don't consider cancer a gift by any means. I've seen it take people's lives, and the toll it's taken on my life and my family. As with any difficult experience, there is always a silver lining. The biggest silver lining for me has been not only finding my voice as a writer, but having an opportunity to know my audience, hear their stories and learn from them. During my transplant, the highlight each week for me was reading the comments section of "Life, Interrupted." Receiving that support was unlike anything else I've ever experienced. Hearing from other people who have gone through what I've gone through but were many years out from it – it was so inspiring and continues to be. On a professional note, it was exciting to me to see my name in print, to have my first byline during the very same week that I was going in for a life-threatening procedure. It gave me hope for the future and hope that one day I might be able to be a writer without the cancer as my main message.
Q.
How do you feel about being a "cancerlebrity"? Did you ever expect that writing about your cancer would create so many new opportunities?
A.
It's been a strange feeling. When I first started writing these columns, I was completely bedridden. For the first few months I was in isolation and couldn't leave my room or go to public spaces. It was only when I got well enough to walk around that I realized just how public my story had become. I was sitting in a coffee shop and the barista came over to me — this healthy, normal-looking 20-something, and she said, "Oh, you're that girl who writes the 'Life, Interrupted' column." She didn't have a cancer history, but she could relate to the life-interrupted message and found inspiration in that. That's happened to me several times since then, and every time it takes me by surprise. It's been incredible for me to meet so many new people in the cancer community and outside of it. Some of my best friends today are young women who are living with cancer whom I met through Twitter or Facebook or the comments section of my column.
Q.
What are some of the other opportunities that writing the column has created for you?
A.
One thing I've enjoyed has been doing the video series and doing other television and public speaking. That's something I never thought I'd be doing particularly because I had horrible stage fright. For me to stand up in front of 1,000 people and share my story and talk about advocacy or blogging and social media was something I never dreamed of doing. It's been very empowering to face that fear head-on. Now a lot of what I do is travel around and speak at colleges and hospitals. Next week I go to Las Vegas for a young adult cancer conference. I'll be speaking there and hosting a workshop called "Healing Through Writing." Then I'm off to London – it will be my first time abroad since I got sick in Paris two years ago. I'll be speaking at a blood cancer gala, and I'm very excited.
Q.
Lately, you have not been writing your column as frequently as in the beginning. Readers often worry this means you are not doing well. Do you have a response to that?
A.
I think post-bone marrow transplant complications are quite common. I did struggle with a minor case of graft-versus-host disease. And recently, I had to have a new port catheter placed into my chest because my veins had become difficult to access. It was a minor procedure, but it did put me out of commission for a little while. And as anyone who has done chemotherapy can tell you, the exhaustion doesn't come just the week of chemotherapy but most often the week after, when side effects start to take effect. I guess I would say that over all I'm doing really well, as well as can be expected, but because of the additional year of chemotherapy I had to do after my transplant I have been very fatigued and unable to write at times.
Q.
But when you are feeling well, aren't you also incredibly busy?
A.
Yes, that's part of it, too. I think the thing that helps me the most is seizing those moments when I'm well and trying to make the most of them whether it's writing a column or traveling to host a young adults cancer symposium. I really try to stay as busy as possible. My way of coping with my disease has been to constantly try and look for those silver linings and, when I find one, to make the most of it.
Q.
You have such a large following on Well. Is there a way for readers to catch up with you between columns?
A.
I'm constantly posting updates through my Twitter, Facebook pageand Instagram. For those who want more regular updates for what's going on medically with me or otherwise, they are welcome to look there.
Q.
In your videos and column, you have shared moments in your relationship with your boyfriend, Seamus McKiernan, whom you had known only a short time before your diagnosis. How is he doing now?
A.
Everything is really great. We're living together with our dog, trying to find a new normal. I think that's something I'd like to write about – what does that expression mean? I think as a cancer patient, when you transition into that survivorship period it can be difficult. For me it's been hard to know what's the next step, where do I go from here. We've been trying to figure that out together. So much of our relationship has been dominated by disease; we are both looking forward to moving on with our lives. Seamus recently started "Generation Why" a platform for other young adults to blog about their cancer. I feel really grateful to him for doing that because not only has he stood by me for all of this, but he's taken time out of his workday to offer other young patients the chance to share their stories publicly. He's seen how much writing has helped me, and he has found a way to give that gift to other young people.
Q.
You also wrote about how cancer interrupted the last year of collegefor your brother, who was your bone marrow donor. What is he up to now?
A.
My brother is doing really well. He's in the Dominican Republic studying Spanish and working odd jobs. He hopes to enroll in the Peace Corps. I think all of this has been very difficult for him as my donor. He's felt a lot of responsibility in regards to how I'm doing, so I think it's a really nice feeling for him to know I'm well enough that he can travel and leave the country without worrying about how I'm doing.
Q.
With your personal health and life now so public, do you have a way to escape the constant focus on cancer that your column brings?
A.
It can be too much cancer, 24/7, all the time. I've started drawing a lot and painting, which is something I did a lot growing up because my mother is an artist. I find a lot of pleasure and comfort in doing things that are completely unrelated to writing or speaking. It's also been so incredible to adopt Oscar, my rescue dog. I'm able to take walks with him, which is something I wouldn't have necessarily done on my own. It's a distraction that's set in stone four or five times a day. That's been really wonderful.
Q.
I know you have thought about writing a book. Are you still considering that?
A.
I am working on a book proposal. That's the next step for me. I'm hoping to write about my relationship with Seamus. I'd like this book to be a coming-of-age love story. Cancer is part of that story, but not necessarily the focus of it. I'm hoping to call it "Life, Interrupted," but instead of focusing so much on the interruptions, I'd like to focus on the "Life" part of the title.
http://well.blogs.nytimes.com/2013/04/18/life-interrupted-a-chat-with-suleika/
