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

Thursday, August 21, 2014


I started writing this post in early July but I've gotten so out of posting that the act of taking the next step from write it to post it has taken forever. I'm not sure what's keeping me from stepping over the threshold but here I go. But first a few vacation photos from a week up on Lake Winnipesauke in New Hampshire.
The view of the lake from the screened in porch
The view from the dock (with the boys lounging on the rocks)

Good beer. Good book. Good vacation.  

And now on with the regularly scheduled post...
The ever-present dilemma I have with this blog is one I suspect most cancer patient/bloggers have: In the ongoing battle to keep cancer on the back shelf, out of reach, and out of mind, to blog about cancer feels a bit like losing. It feels like a daily admission that I have it. That no matter how good I feel, no matter how happy the dream of day-to-day life seems, I'm going to wake up soon. 

But... to not blog feels like I'm squandering an opportunity to connect and to share, and an equally important chance to process and to heal.

So after a two-month or so absence, some thoughts:

June 30th came. June 30th went. I forgot something. It was my third canciversrary -- three years since initial diagnosis. And although I had this vague suspicion as the day approached that it had some significance, I didn't notice it until I started writing this post. 

I take that as progress.

My recent quarterly visit was as uneventful as they come. It's now more than 18 months since my clean scan and with each day, the vision of my chemo regimen grows fainter in my rear-view mirror. Yet, cancer remains all but an obsession with me. Working at a cancer center probably doesn't help in that regard.

For years, the notion of getting cancer seemed about as far afield as winning the lottery -- perhaps even more distant. It just couldn't happen. But now that it did, I feel like nothing - a second cancer? is out of the question. Each passing discomfort, from indigestion to eczema seems like a sign of a lurking tumor -- just waiting for the diagnosis. Not just my good old follicular lymphoma ramping up, but the precursor to other more ominous cancers. 

It's not logical. But once you uncork the bottle of potential illnesses, once your mind learns that the routine doctor's visit, routine blood test, routine biopsy can lead to a not-so-routine diagnosis -- it's hard to unlearn it, and to remember that there can be things wrong with your body that have nothing to do with cancer.

As anyone with a chronic disease knows, keeping your imagination in check can be a relentless battle.

One of my favorite bloggers, Glennon Melton at Momastery wrote this post after Robin Williams' death.

Her take on how people with mental illness process events such as WIlliams' death hit me smack in the face. Yes, I thought as I read it, this is how cancer survivors feel when someone famous or not famous, for that matter dies from cancer. We get that it's not our cancer. It's not our particular case. But we're reminded of our mortality.

* * * * *
At times I'll come across an old email from Carolyn, printed out and stored away in a folder with spreadsheets and other notes. Carolyn edited the Dana-Farber blog before I did and beyond that bond of transition, we worked together on other projects. I'd like to  say we shared a similar sense of humor but she was much funnier than I am. Her email trail reminds me of that, and as my eyes scan the words, my ears hear her bemused tone. 

Carolyn died in April. She was 45.

Her cancer was different than mine. Much different. And, as I do whenever I hear of sad cancer news, I try to create that diagnostic distance. It's not my cancer, I say over and over again. I'm not sure what I'll do when I hear the news of someone who has died from follicular lymphoma.

Cancer science is an ongoing process of understanding and discovery. It's an exciting time with new treatments and potential approaches in the news every day. But to read about advances in this cancer and that one, is exponentially more frustrating than it is exciting when you see people your age dying from the disease, and you wonder whether discoveries will come about in time for you. 

They didn't for Carolyn. 

Her blog, Writing about Eating, which she wrote under the name LimeyG, lives on for now. It was because of her that I ate chocolate with bacon (good) and a fried grasshopper (crunchy).  More importantly, she inspired me and still does to blog better and more often. I miss her voice. I miss her.

Please take a read, particularly this postI'll end by quoting from her blog.

In lieu of flowers, Carolyn has asked that you go have an excellent glass of champagne; tell your family how much you love them; buy yourself a book you've been meaning to read; do one nice, small thing for a stranger.