Sunday, February 1, 2015

Happy Chemoversary

I've had this day circled in my mental calendar for a while now. 

Two years since my last chemo.
Me, two years ago, celebrating
the end of chemo
 The deal with follicular NHL as we all know is that it comes back, sometimes quickly, sometimes years from initial treatment. I'd like to be in that latter category, thank you very much. In fact, I'd be fine to be an outlier. For some cancers, there's a statistical significance to how far out you are from chemo. I'm not sure that applies as much to indolent lymphomas such as fNHL but it still feels good for the visions of chemo to fade further away in the rear view mirror.

And while I'm not much for artificial milestones and there's nothing really differentiating this Sunday from any other (save a big football game in a couple hours),  getting to two years post-chemo and still feeling good -- well it felt like some hill that I needed to climb.

Nothing has changed, except that I now will only see my oncologist  twice a year, instead of quarterly. But having crossed the threshold seemed at least worthy of marking here, and with my most consistent health affirmation -- a nice winter's run along my favorite local route.

That accomplished earlier today, it would be a nice cap to have a Super Bowl victory too. But whatever happens in tonight's game, it's still a good day.


Sunday, January 25, 2015

A Break From Cancer

Hello blog world. It's been a while since I posted. It seems that the further I go between posts, the harder it is to get over that inertia and post one. So here are some thoughts that have been bubbling up over the last couple months. 

Within a  year or so after I started working at Dana-Farber, a colleague of mine left. She was a cancer survivor who had been there for a long time and, as she said, she needed a break from cancer. I get it now. 

Beyond the challenge of having reduced tolerance for anything less than maximum effort on the part of my colleagues, working at a cancer center means I'm surrounded by cancer news. 

Often sad news. 

Between reading this beautiful blog and the sad but inevitable news of sportscaster Stuart Scott, I've been thinking a lot about mortality. Not mine, necessarily. Just mortality, in general, and how it can envelop us, particularly those of us who work for a cancer center. 

News that a patient we know has died often seeps in to our offices, filling the cracks between meetings and in-box messages, hovering over our department like Eliot's yellow fog and slowly settling heavily on our hearts. 

When I read the blog post that Jesi's mother wrote about Bringing Jesi Home, I'd been following her story and I could feel her family's loss through my screen -- could feel it so much that it hurt. 

And I thought of all of these beautiful patients we hear of --  people we've met through emails and conversations, through interviews and photo shoots, through videos and tv appearances.  Kids like Avalanna and Rayquan and Karina and Jesi, and now Fernando, who I mentioned a year or so ago.  They're  graciously shared their stories for us, with us. And if we're feeling this pain; what grief must their families and friends possess? 

It leaves me feeling utterly, utterly powerless. I truly believe that we're doing great things here, and at many cancer centers. But the foundation for new cancer treatments isn't being built in my office. And in fact, tThe connection between what I do and affecting some change in cancer mortality is beyond tenuous.

But if I'm going to pursue my editorial career at a cancer center, it seems like I have only two choices. Give up and go home; or redouble my efforts and remember that through our work, we can make a difference. 

We can share information and stories, that at least in some small way helps cancer patients or their families. And by talking regularly about these topics, by raising the volume of the cancer conversation, we can bring a little more attention to cancer research and discovery, we can ever-so-slightly help advance the cause.

This is the only rallying cry I can raise when the news hits us hard.  It's one I hope everyone working at any cancer center shares. 

Tuesday, October 7, 2014

It's Still Working: 7 Observations After a Clean CT Scan

Back in December 2012, after three rounds of chemo, I had CT scans to gauge the efficacy of the treatment. Were the prescribed drugs having the desired effect? The answer was yes.  And now, nearly two years since that first good scan, I'm happy to say that my latest scans are clean and stable.

  • Today's scans were uneventful -- which is how you want to describe your  medical appointments and plane trips. Three  scans today (pelvis and abdomen, chest, neck, if you're scoring at home) and there was nothing unusual to report.
  • A clean scan is great news, but it doesn't feel like a celebratory kind of thing; in fact, it doesn't feel like a thing at all. It just feels like the way it should be.  
  • The quarterly appointment is a bit of an odd thing, the appointment. By the time, I'm meeting with Dr. L, all the poking and prodding is over. I've had my bloodwork and scans, she's reviewed them with radiologists and consulted my labs. So beyond talking with Dr. L about ibrutinib vs. idelalisib -- two new lymphoma drugs -- most of our appointment was spent discussing Twitter and the Disney show Dog With a Blog (our kids like it.) 
  • I always feel like I'm incognito on appointment day. In the place and buildings that are so reflexively known to me, where I roam freely through the back hallways and shortcuts, where I meet with doctors and scientists as a fellow employee, the moment I swap my employee ID for my patient bracelet, I feel a little out of place.
  • A cancer waiting room is no place for a healthy person. 
  • I didn't realize until driving home the other night how much cancer stole my identity. I've written here many times how the challenge is always to not let cancer define me; it is now an inexorable part of me, but it isn't the sum of who I am. Still, the very idea of having to go to a medical oncologist regularly, it deprives me of the notion I had of myself as the kind of person who doesn't get sick.
  • Now, nearly two years clean, so to speak, I'm beginning to get the faintest glimpse, like a wispy memory of a dream that you can't quite remember, of an identity not dominated by cancer. Now that's something to celebrate.

Tuesday, September 9, 2014

See you on the soccer field (or blog)

If you're looking for me the next two months I'll be at a soccer field. Hopefully with coffee.  And an iPad.  I'll be blogging about that at