Before 29 year-old Jenna Benn even knew her exact diagnosis, she was already thinking about life after cancer. Knowing that someday having a family would be part of her plan, she enrolled in the Fertility Preservation Program at the Robert H. Lurie Comprehensive Cancer Center shortly before beginning treatment.
Six months later, Benn is finishing her treatment for Grey Zone Lymphoma, a rare type of blood cancer, training for a half-marathon, and reflecting on her experience. In advance of the Cancer Center’s Survivors’ Celebration and Walk, she shared her inspirational story with us.
How did you get directed to the fertility preservation program at Northwestern?
It’s kind of a funny story. My friend, Bonnie Rochman, is a journalist for Time magazine. Her beat is health, and [she] focuses a lot on women’s health issues. It was on her radar immediately, [but] she initially [held back] on mentioning it to me, just because of the shock and awe of being diagnosed that I had to deal with. She had done a whole article on Northwestern’s program, so she knew all about it, who to contact, etc. As soon as I was open to hearing other things aside from my diagnosis, it moved very fast. I actually had a meeting with them before I even met with my oncologist, before I even knew, specifically, what my exact disease was, even before I had my biopsy done.
It allowed me to feel like I could be proactive in the process. There was a lot of waiting, in terms of staging, figuring out exactly what kind of disease I had, so it made me feel like I had an element of control. I knew that I had cancer; they had found a mass. They thought that it was Hodgkin’s, [but] they weren’t 100 percent sure. That was enough for me to say, “I need to think about life after cancer.” It wasn’t really an option to think about the other stuff.
Why was fertility preservation so important to you?
I’ve always wanted to be a mother. It [has] always [been] a high priority for me to have a family, and the idea of having that robbed from me was, to me, probably the most devastating part of it. So when I knew that there were options for me, I jumped on that. There wasn’t a question.
I think it was a blessing too that I had the time to go through it, that my cancer wasn’t so advanced that I had to immediately start treatment. I was really lucky in that regard, and I know that a lot of people are not in that position, and have to start [treatment] right away.
And the truth is too that I didn’t know how bad my fertility was going to be affected. That’s not something that I think people really talk about. I know that my family and friends [were] really surprised by the fact that chemotherapy affects your fertility, and that I’m going to go through menopause earlier.
I think it really affected my fight, because I had taken these measures to ensure that I would be able to bring life into the world. I think that helped me fight a lot harder while I was in treatment.
I read on your blog that you’re planning to run the half-marathon in October with Team in Training, which benefits the Leukemia and Lymphoma Society (LLS). Have you always been a runner?
No, no. I hated running, up until I got cancer. You couldn’t have paid me to run. I think the most I [would run] was a mile, and it took a lot of motivation to get me to do that. I was always a dancer, did a little bit of boxing, but dance was my thing.
But running has been really therapeutic. I don’t know why I became attracted to it, or why I all of the sudden got on the treadmill, but now it’s become a thing that I do for every round of chemo. It’s a time for me to process what’s going on – a time for me to cut myself off from technology and the world around me and really process what’s happening. It’s also a time for me to feel really connected to my body. It’s a pretty miraculous thing, to go from not being able to get out of bed, or not manage a flight of stairs, and then two days later to be able to run seven miles. I’m just in constant awe of my body and its changes.
To back up a little bit, I have a couple of friends who immediately signed up with Team in Training as a way to sort of honor what I was going through, and dedicate their run to me. So it put it on my radar. When I started to realize that I was really enjoying running, I started upping how much I was doing. I thought, “If I can do six, I can do 13.” And if I’m doing this with so much poison in my body, I can do this a couple of months when I’m feeling good.
I also feel really indebted to LLS – they founded the drug that is essentially saving my life. I raised almost $7000 in a week – that’s awesome. I’m hoping by the end of it to raise $18K.
Do you have any advice for young people going through a similar diagnosis and treatment?
You have to figure out ways to hold on to your spirit – that’s the most important part. The disease takes so much from you, physically and emotionally, so figuring out what makes you happy, what makes you who you really are, and holding on to that [is really important]. Throughout treatment, I was so scared that I was going to lose my voice – [my voice] being representative of who I am. The external stuff has changed – from losing hair to losing weight, skin changes – you go through so many physical changes, that all you have to hold on to is internal. For me, it’s been about being able to write, to continue writing. And dancing for me has been so therapeutic. I’ve always loved to dance, but I love to dance in a very different way right now. I have to do it – I have to. It makes me so happy, and it’s so a part of me.
I’ve been thinking a lot about this too: The way I’ve chosen to fight this disease is very much like how I’ve chosen to live. When you get a diagnosis of cancer, you’re not suddenly going to start fighting differently than how you’ve chosen to live your life. If you’re positive person, you’re going to tackle this with positivity. If you’re a negative person, it’s going to become magnified. The person that you are becomes magnified at a time when you feel like you’re losing who you are. It’s a very strange phenomenon, I guess.
Creating a system of support is also key in many ways. Not everyone has the luxury of having their parents and family and friends [with them]. I think there are a lot of people who have to battle this disease alone. There are a lot of organizations out there that offer support. For me, Imerman Angels has been just a lifesaver – it’s one-on-one cancer support. You’re matched with someone who has your specific disease, age, etc. I was matched with an incredible survivor – Ethan Zohn. He was actually on the show Survivor. He won Survivor Africa. We had the same, rare type of the disease. Mine’s a little different from his, but neither of us have straight-up Hodgkin’s.
That’s the other part too: I have Grey Zone lymphoma, which is really rare. When you’re diagnosed with cancer, and you have a rare type, it can feel very isolating. All you want to do is talk to someone who has gone through that kind of diagnosis. Just yesterday I connected with someone who is my age who has it. He’s 29, lives in Maryland, and has been in remission for about a year now. And he is also training for a marathon, so I’m really excited to talk with him about his approach.
You’re also participating in the Cancer Survivors’ Celebration and Walk in June. Why are events like this important to you?
The disease itself is really isolating. Even with the amount of support that I’ve had – and I’ve had absolutely the most tremendous support system, from my medical team, to family, to friends, to strangers who have come out of the woodwork to be supportive – at the end of the day, it’s a very private battle. And there’s something to be said about being in touch with other survivors who have experienced that. You have an immediate connection with them. I feel like now I have my close friends who have been there throughout, and this whole “survivor world” of people I haven’t known for as long, but I feel like I’ve known for my whole life.
When you’ve gone through the trenches and you’ve been through this kind of profound experience, there is just this connection that exists between you, and a level of intimacy that is immediately established and hard to replicate. It’s also hard to explain. So I think that participating in this kind of walk will be a celebration of life, a celebration of survivorship, and that means a lot of different things. For me, it’s on the heels of the end of my treatment, and it’s another huge milestone for me. Being able to participate in this walk as a survivor who has finished treatment – it will feel like crossing that finish line, in a way.
To learn more about the Robert H. Lurie Comprehensive Cancer Center's Survivors’ Celebration and Walk on Sunday June 5, visit their website.