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.

--MIchael

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.

-michael

Cancer and Superstition

I remember watching baseball games on tv as a kid and firmly believing that in order for the Mets to score runs, I needed to sit on the floor. This being the Mets of the late 70s (who were even more abysmal than the Mets of 2013), they needed quality hitters not  superstitious juju to score runs and win games. But that didn't stop me from following the ritual.

A rational mind, I know, would look at superstition and scoff. Show me the scientific proof that a broken mirror produces bad luck, or knocking on wood prevents a jinx from erasing your good fortune. It just doesn't make sense.

Still, here I am with good news about my recent visit with Dr. L and I'm hesitant to write about it. And I know I'm not alone. I know many other survivors who fear that talking about how well they're doing tempts fate too much, almost inviting bad news to follow the good.  

I was reading a story recently about a Parkinson's  patient who confided in his therapist that he was constantly waiting for the other shoe to drop. His therapist told him, "You have Parkinson's. The other shoe dropped a long time ago."

Five years or five months from now, I may have to write a post that talks about how my lymphoma has returned. But that post will happen regardless of what I write today. The more I think of it, the more it seems that avoiding the positive news, or couching the positive in conditionals and wood knocking is giving in to the natural anxiety that comes with a cancer diagnosis. It puts the emphasis on all that can go wrong, instead of what's gone right. 

It's waiting for the other shoe to drop.

So I'll share the good news. After CT scans, bloodwork and an appointment with Dr. L, I remain free and clear. In fact, we are not going to do another scan for a full year. And, on top of that, the Red Sox, my adopted team since the late 80s have clinched the AL East. The Mets, on the other hand, didn't have nearly enough juju this year.

--michael

Just for fun, here's the link to Stevie Wonder's great song, "Superstition"

Is It Strange to Look Forward to a Visit with your Oncologist?

This is my third attempt to post a new entry. I'm tempted to say it's writer's block, but it's not. It's just that the thoughts I've been having are worthy of about a line or two and not a full post, so I'll do what all good bloggers do when they can't connect the dots from idea to idea -- I'll use bullets. 

• I've been looking forward to my upcoming visit to see Dr. L. But then I often find  myself looking forward to my quarterly visits. That seems strange. It's not the Crystal Light flavored contrast agent; or the pre-scan fasting; or the bloodwork. Part of it is that it's an opportunity to be another 3-months clear. As much as I try not to live scan to scan, there's always that mental calendar that's hard to turn off. Each post-chemo visit from now until whenever may carry the anxiety of the lymphoma returning, but it also brings with it the opportunity to have as close as we get to a clean bill of health.

• The other part of the anticipation is because of the way I'm always treated at Dana-Farber when I replace my employee ID with my patient bracelet. There's a feeling of welcome and belonging that permeates the place and for cancer patients who can feel vulnerable and full of a sense of otherness, not to mention just plain sick, this big bear hug of a feeling helps.

• I'm also looking forward to our trip to NY to the Lymphoma Research Foundation's National Education Forum. But I have to admit, it's just odd to be looking forward to attending a forum for cancer patients. As we say, the cancer patient/survivor club is the nicest club that no one ever wants to join. It will be good to hear the latest on lymphoma research and treatment, maybe connect with a few other follicularians (that's my new word for follicular lymphoma survivors) and to get away for a weekend. (If you're going to NY for this event, let me know!) 

• The longer it is between posts, the harder it is to post. 

• I was surprised the other day to feel a passing wave of nausea. But if you believe what you read on the Internet, that's pretty normal even 6 months post-chemo. As a friend of mine said, I shouldn't be surprised given all the chemicals that were pumped through me. It's happened on occasion since treatment finished, but it's manageable and well short of the need for medication to manage it.

• Our less processed life continues. It continues to surprise me with how much artificial stuff is in supposedly good-for-you foods.

• As I introduced myself the other night to my new editing class, I was thinking: I wonder if any of my students Googled me, and if so, what they found. As an adjunct professor, there's not a lot of official info on me on the Emerson web site, but Google is an open book, so to speak. Two or three years ago, it would have been an innocuous search that would have revealed a French chef, and a corporate bio or two or me. Now, it's a different story. Cancer is inexorably part of my identity. It's not what I wanted, but I'm good with it.

--Michael

p.s. - It's taken more than a week between writing and posting. It's just going to be a busy fall, with work, teaching, sports, and other commitments. So while I aim to post more regularly, it may be a quiet blogging fall -- both for writing and reading. So to all my fellow bloggers out there, hope you're doing well.