Monday, October 28, 2013

Cancer: My Distant Relative

When I was first diagnosed, cancer was so intimately involved in my life it essentially moved into my house, shared a room, consumed our resources. It was a member of the immediate family, always present and always on my mind.

Over the two plus years since diagnosis, though, I've been able to create a little distance. Even when I was undergoing chemo, it felt like cancer had moved away a bit -- to perhaps the position of an extended family member who I might think of often, but only visit occasionally.

Then, after treatment ended, cancer became more a family relative, who I still think of often -- if not quite as often -- and only visit infrequently. Which brings me to where I am today: If cancer were part of my family, it would be a distant relative -- one I know exists but don't plan on visiting any time soon.

That's good progress

But eventually, I'd love for cancer to be that distant relative I didn't even know I had.


Friday, October 4, 2013

5 Things I Learned at the Lymphoma Conference

Friday evening. Sipping a glass of wine with Stacy in a conference ballroom in Brooklyn, NY. We've just met Scott and Joanne, Burt and Kathleen. We get to chatting and there's an instant connection as lo and behold, Scott and Burt are also follicular lymphoma patients/survivors. But I suppose that's a bit expected. After all, wer'e in Brooklyn for the Lymphoma Research Foundation's 18th National Educational Forum. Over the course of a 2.5 days, we heard presentations from some of the country's leading lymphoma doctors and researchers. It was a wealth of information and a lot to take in. But I'm glad to have gone, and grateful to LRF and the dozens of doctors who participated.

My running route on Saturday morning: Across the Brooklyn Bridge at sunrise

Here's what I learned

1. There's abundance of life after cancer. That's a quote from Kelly Payne who gave a short speech about her survivorship story. And it's not that I related to her story. Different disease. Different treatment. Different prognosis. But there's was a palpable sense of hope and optimism throughout the conference -- not just from the oncologists who seem to view this as a boon time in terms of lymphoma drugs being developed --  but also from the patients. At first blush, you'd think a room full of 500 patients and their families would be depressing -- people desperately searching for an answer to their cancer question, for a rope to grasp. But that wasn't the vibe at all. It was living proof of the progress being made, and of the resiliency of individuals. 

2. Cats can have vitamin c deficiency. And apparently, that can cause leukemia in felines. Or so said one participant. No, she wasn't a doctor. Yes, she wanted to know if she should take vitamin C supplements.

3. I'm in the right place. It's so important to have a good, trusting relationship with your oncologist. Different oncologists have different approaches. And what works for you may not work for me. But the combination of Dr. L (who happened to co-chair this national forum) and the support of Dana-Farber is right for me. The combination of research knowledge and lymphoma expertise, responsiveness and approachability, and compassion and kindness may be one of the reasons I look forward to my quarterly visits. It's comforting, too, to know that the resources of one of the world's leading cancer centers is behind her (and me).

4. Cure. Long-term remission. Quality of Life. It doesn't matter what you call it. The drugs being developed now - idelesalib, ibrutinib among others -- promise to usher in a new era in lymphoma care that was first promised with the introduction of rituximab in 1997. 

5. Lymphomaniacs only. When we sat down at a table at Friday evening's networking reception, Scott's first question was: "Are you lymphomaniacs?" Right then, we knew it'd be a good weekend.