Jamie Reno

I want to take a quick break from ASCO and EHA to write about Jamie Reno, who died in April. 

I used to write about some people as Lymphoma Rock Stars -- people who did great things for the Lymphoma community, whether they were doctors, researchers, patients, or something else. Jamie was a Lymphoma Rock Star.

I didn't find out he had died until a couple of days ago. Jamie was a long-time journalist, and his most recent job was as editor of Breaking Cancer News, which I wrote about a couple of years ago.  The folks at BCN sent out an email to their mailing list, with a really nice tribute to him, two months after he had died. From what I can tell, his family wanted to keep things kind of quiet, and there wasn't much about it online. I looked at the Living with Follicular Lymphoma Facebook page to see if there was any news there, but there wasn't. There was nothing on the discussion board/support group that helped me so much 18 years ago. I thought maybe some old-timers there might have heard something. But there wasn't anything.

I'm not criticizing the family's decision in any way. As patients, we deal with our cancer in the way that makes most sense to us. And as family's, we mourn our loved ones in the way that makes most sense. I've been in the unfortunate position to have to decide how to mourn both of my parents' deaths from cancer. 

But at the same time, Jamie Reno really was a Lymphoma Rock Star, and I feel like there should be something said about that. I never met him, didn't know him, but he was definitely a presence in my life as a Follicular Lymphoma patient.

In 2008, when I was diagnosed, if you googled Follicular Lymphoma, one of the first things that came up was Jamie Reno's book Hope Begins in the Dark. It's a collection of 50 stories from Lymphoma patients and survivors. He was a life-long journalist, writing for Newsweek for 23 years, and winning a National Magazine Award as part of the Newsweek team that wrote about 9-11. He was a cancer survivor himself. He was diagnosed with an aggressive form of FL when he was 34, and went through CHOP. He was in remission for over 2 years, and when it came back, he tried Bexxar, a RadioImmunoTherapy. It gave him 28 years of remission. At some point, he left Newsweek and devoted himself to writing about cancer. In addition to Hope Begins in the Dark, he also wrote a book called Snowman on the Pitcher's Mound, about a 10 year old boy whose mom is diagnosed with cancer. The mom character's experience with cancer kind of parallels Jamie Reno's experience with relapsing and receiving RIT.

He was a musician, too, managed to get some great musicians to play on a CD that he put out.  

With all of the stories he helped to tell about cancer, it seems like his needs to be told to the people who haven't heard it before.

Death is always hard. Even the death of someone we never met can break of a small piece of us.

But maybe that little piece that is gone can be replaced by hope. That was certainly a message that Jamie Reno seemed to want to pass along. The email that I got from Breaking Cancer News talked about how much he emphasized the "good news" about cancer -- breakthroughs in treatment, positive stories about survival and courage, and the importance of hope.

The title of his book, "hope begins in the dark," echoes a quote from the writer Anne Lamott. I honestly don't know if she said it first, or if it came from somewhere else, but here's what she said: "Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up."

That's a fitting message for cancer patients, and especially for those of us living with Follicular Lymphoma, who do plenty of watching and waiting and working and not giving up.

Our stories matter. As I said, much of my FL experience had Jamie Reno's story lingering over it, in very good ways. It always helps to have a model, someone who has been there and has done OK, someone who has been in the dark and found a way out.

I try to be that for other FL patients. Now you know why.