Friday, June 28, 2013

In Peace

At the beginning of the week, I knew that Julia was about to die. She was no longer able to eat and was essentially comatose. I selfishly wondered how her family would tell me; via an email or a text message, I figured, since that’s how we usually communicate.

Yesterday morning, I texted Julia's daughter, "Nina," to tell her that I was thinking of her, her mom, and the rest of their family; that this must be a terrible time for them and I was so sorry. Nina texted me back a few minutes later to thank me. Then she told me when and where the wake and funeral would be.

For some reason, I was shocked. Despite that I anticipated this news since the day I met Julia two years ago, the real thing felt like a devastating surprise. I wondered if Nina and her family felt the same way and I prayed that they didn't.

*  *  * 

Two nights ago, thanks to the idea from an awesome new friend and fellow blogger, I spent some time writing about bucket lists. Actually, I'm me, so I hadn't actually reached the bucket list part of the bucket list blog. But after several drastic changes of direction, I finally had an idea of where I was headed.

When I started brainstorming about bucket lists, my gut told me that a bucket list wasn't really my kind of thing. Then I thought more about it. I wrote and I deleted and I wrote some more. I remembered a book I had read a few years back, when I was on maternity leave with Annabel and trying to figure out what I wanted to do with my professional life which, at the time, was mostly miserable. The book was called, Creating Your Best Life, and something made me dig it out of my basement Wednesday night.

Turns out that the first chapter was all about bucket lists. My subconscious may have remembered that part, but otherwise, I had totally forgotten it, probably because back then a bucket list was as foreign an idea to me as cancer. But I had remembered the main message told over a few hundred pages -- Write down your goals and you will be better able to achieve them. And when you achieve goals, you are happier. I got the point, and a few months later on the train home from work, I made a list.

It wasn't a bucket list. It was just a plan for the next few years -- when I would have my third kid (summer 2013), when I would leave Ropes & Gray (January 2015), how much money we'd have saved by each milestone (a hell of a lot more than we have saved now). My list is in a folder in a file cabinet in my basement. Laughing at me.

Nevertheless, by the end of my writing hour on Wednesday night, I had decided that I should draft a new list -- places I want to go, things I want to see. I had no idea how we'd ever afford these things, but I'd dream about them anyways. It wasn't a cancer thing. It was just a fun thing.    

Cancer, however, did make me hesitant to put the list down on physical or virtual paper. I worried that if my cancer returned and I never made it through my list, my family would find it one day when they were cleaning out my things and be crushed that I had dreams left unfulfilled. So the list was dangerous, even if it included the most important caveat -- that these things were just gravy, small items on a silly list, because I had already been given almost all of life's greatest gifts. So, in my usual roundabout way, I wrote about how I was going to make a mental bucket list. 

Yesterday, however, the news of Julia's death changed me. All of the sudden, the idea of a bucket list, even a mental one, made me feel guilty, spoiled, and totally misguided. I was back to my gut reaction -- no bucket list for me; just day to day appreciation of the simple things.

Surprisingly, the whirlwind of emotion I had over Julia's death had very little to do with my breast cancer. I just wanted to scream for Julia and her motherless children. Staring out my office window at Boston Harbor, I became a bit irrational. For some reason, I wanted to take all of my anger out on Aaron Hernandez. I know, it's the most ridiculous and random reaction, isn't it?!? But for some reason, after I learned of Julia's death, I blamed the ex-NFL star for all that was wrong in the world. Why did he get to walk on this Earth and Julia didn't? Why was he strong and healthy enough to shoot people and Julia was dead? I know, I'm mostly just nuts, but as I broke my no-crying-at-work rule in the privacy of my own office, I was just so mad that someone so good was taken so early.  

A few minutes later, after I collected myself and realized that Aaron Hernandez and Julia weren't exactly related issues, I was just sad. So very sad. Julia never got to make a bucket list of adventures and travel destinations. She wasn't even well enough to go to Nina's high school graduation, and I know how much that had meant to her. My heart ached; physically ached. I've felt that sort of ache only a few other times in my life and in those times it was under similar circumstances -- someone so good and so innocent being taken far too early. 

I tried to work, and somehow, I pulled myself together to actually get things done. But when I left work, my heart still felt broken. 

On my commute home, I just thought about stuff. I thought about what I could write, because that's come to be the way that I organize my most confusing thoughts and emotions. But I had no independent clarity; no words of wisdom; no idea of how I could ever make this f-ing awful situation somehow seem, at least a tiny bit, right.

Now I realize, it's not right, it never will be, and I shouldn't even bother searching for anything to argue otherwise. 

But last night, as I waited on the platform at Back Bay, I returned to the stream of text messages between me and Nina, as if seeing her words could somehow comfort me. I knew I was a fool to expect someone in an inner circle to help me in my outer circle, but I was desperate for something.

As I mentioned above, Nina's first message back to me yesterday included logistics about the wake and the funeral. But in my shock that Julia was gone, I had glossed over Nina's last sentence. My Mom left in peace, she had written.  

At first, I internally scoffed at that. She didn't leave in peace, I thought. No one could die from cancer in peace.

Then I thought more about Julia. I thought about how organized, calm, and brave she was when my amazing colleague, Liz, and I first met her; how she always smiled, even when she was crying. I remembered how she had come into the small office at the back of the health clinic in Dorchester with a small Hello Kitty notebook full of her most perfect Vietnamese penmanship. How she had documents in worn but well-cared for envelopes. I remembered the first time she removed her wig in front of pre-cancer me -- how free and sick I thought she looked, and how scared I felt. I remembered how Julia sat with us for hours, a tiny woman on a really big mission.

What she wanted was simple, albeit, almost impossible -- she wanted the father of her children to be here with them when she died. No bucket lists. No skydiving. No sleeping in satin sheets. Julia just wanted to be sure that her children had their dad; that they wouldn't be alone when she departed. Then, she could die in peace. 

Julia's children were not alone yesterday morning at 7:19am when Julia passed. Their father was with them. I felt an ounce of comfort when I remembered that.

Nonetheless, I am a long way away from finding peace with Julia's passing. But it's not all about me, now, is it? Just because I think it's so tragically unfair doesn't mean that Julia hadn't found peace. In fact, deep down, I honestly believe that she had. 

In the end, my gut instinct was right -- at least right now, I'm not a bucket list kind of person. I'm more like Julia. I don't need to travel the world or bungee jump or finish a marathon. I just need to know that my family would be OK if, Heaven forbid, anything ever happened to me. In the end, I really just want to leave in peace. Whatever that may mean at the time. 

And finally, since Julia's story may never be told anywhere except the pages of this blog, there's one last thing I want to mention. Julia's name is not Julia. It's Mary. 

Tuesday, June 25, 2013

Thoughts on the River

I don't sail, but I do watch TV. The other night, Brian pressed Play on a 60 Minutes Sports episode about these crazy things-that-resemble-sailboats and despite that I have no particular interest in boating, I was fascinated.

Apparently there is a big sailing race called America's Cup (or the America's Cup?). I know absolutely nothing about it except for what I saw on the 60 Minutes episode. Where I grew up, sports involved a stick or a ball or maybe even a pool, but definitely not a multi-million boat. I'm not saying that sailing isn't a sport, because it most certainly appears to be; I'm just saying that it's not my kind of sport. But 60 Minutes gets me every time.

America's Cup begins in July and lasts through September. During those summer months, San Francisco Bay plays host to boats from all over the world. Four of those boats are really special. It's not clear how much these really special boats cost, although I’m pretty sure I remember a 60 Minutes interviewee claiming that it was upwards of $100 million. Here's a photo of the Team USA boat (or Team Oracle boat? I don’t get it, but the sponsorship stuff kind of makes me want to barf):


Anyways, these boats have wings; literally, like airplane wings, and the tallest wing is 13 stories high. Like most things with wings, these things fly. I don't think sailors use "miles per hour" but 60 Minutes was kind enough to convert the units for us land-dwellers. Apparently these boats go about 55 miles per hour, and almost literally, they blow any other type of boat straight out of the water.

Here's the problem (aside from the fact that this billionaires’ hobby could feed millions of starving people) -- there's very little room for error. Just last October, the Oracle boat flipped and broke into pieces. It was eventually dragged to shore and rebuilt, although that effort took four months of 80-hour work-weeks by 24 expert boatbuilders (hence, the $100 million estimate).

People claim this new sport (or new version of an old sport) is the NASCAR of sailing. It certainly has the speed and the danger that comes with NASCAR (not that that’s my kind of sport, either). Just last month, a British Olympic medalist, Andrew Simpson, was killed with the Artemis team boat capsized in San Francisco Bay. Simpson’s death provoked more questions as to whether the sport has gone too far. And that is what has me still thinking about this 60 Minutes episode over a week later -- the concept of "too far." What is “too far”? As Americans, I don't think we're usually bred to know.

* * *

Last week, I went back to the binders that Rachel remade for me a few Christmases ago. I pulled out the Africa binder and flipped to the divider marked, Imperialism. I immediately found what I had been looking for -- a photocopy of what had clearly been two wet pages of The Poisonwood Bible. I love that book, and the excerpt I posted last week is one of my favorite excerpts within its hundreds of rich and brilliant pages.

I used to love to read this excerpt with my Modern World History classes. My students would share their first impressions and I'd point out my favorite parts, which was pretty much the whole thing. I especially love this line:

If only a river could go uncrossed, and whatever lay on the other side could live as pleased, unwitnessed and unchanged.

During this lesson, my students and I would discuss the concept of progress. What is progress? Is it always good? What were some examples of how progress can sometimes bite back? How ironic given my last post.

Now more than ever, I appreciate progress. Progress made Herceptin and Herceptin is saving my life. Progress taught doctors how to remove an appendix when it bursts, and I thank God for that because Rachel had her appendix removed through emergency surgery on Sunday morning. I don’t go an hour without being appreciative of these steps forward.

As I emerge more fully from my cancer cocoon, I’m looking around and trying to decide what my role will be in the breast cancer world. Ninety-eight percent of me wants to help make more progress towards curing breast cancer and supporting anyone who is forced to deal with the terrible disease.

The remaining 2% of me is selfish and scared. It wishes I could just be cured and move on; that I could find a way to stay sheltered from any more pain that comes from a world full of cancer.

Establishing a new role in any significant effort is rarely easy and when that effort is deeply personal, it's even harder. So I've thought a lot about where my place will be. Should I wear pink and walk to raise money every year? Should I talk to patients at Dana-Farber, or better yet, should I listen to them? Or should I just keep writing? Do I owe anything to those who will come after me and if so, how much? These aren't easy questions and I would guess that any grateful cancer patient grapples with them at some point.

Obviously writing has been one of the key sails (or wings) on my life boat these past eleven months. So I figured I should start there. A few months ago, I copied all of my blog posts into a Word document. It was over 600 pages long, single-spaced. I wrote an introduction and I cried when I returned to certain corners of my memory. For a few weeks, I lightly edited, fooled around with fonts, and fell asleep at night thinking of a title (I still don't have one that I love). I started to think that a book was being born, or at least, conceived. Then, I thought some more.

My mind returned to the Poisonwood Bible passage about crossing rivers. In fact, the very night that I typed out those words happened to be the night that Brian clicked onto the 60 Minutes episode about the world’s fastest sailboats.

Recently, I have been thinking a lot more about what I ultimately want to come of this blabbering blog. Of course, I want my kids to one day see it, and thanks to my dear friend, Lynne, I already have three pink binders (and counting) to show them.

As for sharing it with others, I have been trying to decide if I want to dedicate hundreds of hours to an effort to turn these blabberings into something that an agent and a publisher may want to support. I’m certainly not comparing that work to rebuilding the Oracle boat, but there are two powerful similarities – they both require seemingly countless man-, I mean, woman-hours, and neither of them would be a sure bet of making any real progress.

This past hot summer Monday, the kids were home, Brian had work, and it was my day "off" (in quotes because I honestly believe that staying home with kids is more work than working).  That day, I didn’t make any progress on any potential book – no query letter drafted, no edits made to the “All Text” document of my collected blog entries, no following up on any leads to try to make a book actually happen.

Instead, Teddy, Annabel, and Teddy’s best bud, Liam, and I spent the morning at a small lake in a neighboring town. The beach is small and scattered with leaves and rocks. The dock is a bit rusty and even at $6 for the group of us, there was no line of people waiting to get in. It was perfect.


After we dragged what felt like half the universe out of the car, the kids kicked off their Crocs and we spent a few hours in the water. The kids jumped off the dock as I told them what to yell before they went under (“Your favorite Red Sox player!” “Who will win the Bruins game tonight!”). It was Heaven, even considering the typical turbulence of trying to get my kids to leave a place they love. 


All of this has really made me wonder – Where is my place as a breast cancer survivor? Do I have anything that I should share and if so, what would I sacrifice to put it out there? 

Let's talk hypotheticals. Let’s just say that hundreds upon hundreds of hours of drafting and editing and, let’s be honest, flat out begging and a stroke of miraculous luck, yields me a book deal. Then what? What will be on the other side of that river? I have absolutely no idea. 

I guess, from the small amount I’ve heard and read of author's lives, there could be a book tour. But I don’t want to be in a hotel by myself on a book tour. I want to be at the lake with my kids (and Liam, of course). I want to be sitting on our screened in porch on a Saturday night with my husband and I want the usual chaos of a Sunday night dinner at my parents’ house.

So maybe making this blog into a book is taking it too far. Maybe that river should go uncrossed and whatever lay on the other side should live unwitnessed and unchanged. I know, it’s so wholly un-American to think this way – to stop and say, I’m happy with what I've done; I don’t need to do more, be better, go faster. 

Then I wonder, Would someone else be better if I crossed that river? Is there a young woman on that other bank that could benefit from something I've been through? I’m not saying that I could rescue anyone from cancer’s suffocating pain because I certainly can't. But could my story make someone else feel less alone in this fight and in its aftermath? Would sharing my experiences beyond the blogosphere make me feel that way? Or am I as foolish as the Portuguese -- thinking, if only subtly, that I could help others when really, they already understand things far better than I ever will? 

It's hard to leave a great river uncrossed and I'm pretty sure that we risk regret either way. So all I can do is rely on what I know for sure -- first, that I'm not going to try to cross any great river until I know exactly why I'm doing it. And second, I won't go anywhere if my family can't come with me. 

Friday, June 21, 2013

Terrible Terrorist

Cancer is a terrible, terrible terrorist and it’s really starting to piss me off.

I think I feel it. Everywhere. Cancer in my back and my chest, my arms and my legs, and even…in my ear.

I haven’t felt great in a few days. Besides a sore back, it's nothing but fatigue and a bit of nausea. But of course, I have spent way too much time worrying about why. Which is probably just the reason that I am tired and nauseous. Damn you, stupid cancer.

Yesterday, Teddy puked three times – once in Brian’s classroom, then in Subway, then in Brian’s ear when Brian was at the dentist. Teddy’s a really funny sick kid because aside from the puking, you’d never know he was sick (he gets that from me, not from his father). Sadly, Teddy’s puking has been a source of comfort for me these last two days. I know, what kind of mother says that?!? The terrorized kind; the kind that needs to blame aches and nausea and fatigue on something besides a recurrence of cancer.

A few nights ago, for the first time in months, I took an Ativan to get my brain to shut off from the I feel cancer thoughts. I was caught in one of those brief but horrible downward spirals – where my mind is a tornado of thoughts about my kids wondering where I went and my husband with an empty pillow next to him (although he’s such a cutie I’d bet it wouldn’t be empty for long (wink wink)).

Yep, it’s been a tough week in my crazy head which was catapulted into confusion by my minor back injury, I am sure. So tonight I’m writing about survivor mode. Not survival mode; that was before. Survivor mode. And let me say right up front, survivor mode is so much harder than I ever had anticipated.

Anticipation is a funny thing, though. Recently I found myself wondering, Why didn’t someone tell me this phase would be so hard? What, is this a little cancer secret that everyone wanted to keep? I guess I was looking for someone to blame. Then I answered my own question – Did I really want Dr. Bunnell to have warned me back in September, “You think this part is hard? Just wait for about six months after chemo when you don’t feel well. Just wait until you see how much that’s going to suck!” Yeah, I wouldn’t so much have appreciated that. It’s kind of like why few of us bother telling a tired pregnant woman, Just wait lady; it’s only downhill from here. One day at a time, right?

Anyways, I am not claiming that survival mode was easy. Diagnosis, surgery, and chemo were tough, but, like most things, their greatest weakness was their greatest strength. They required full out Battle Mode. And so I battled. But what the Hell kind of mode does this phase require? Forget-About-It Mode? Yeah, I wish it were that easy.

I know I shouldn’t complain. I know how blessed I am that Herceptin has given me the chances it’s given me. But when I can’t explain a pain or I feel carsick just sitting at my desk, I can’t help but wonder if it’s happening; the it that terrorizes me. Then what? Should I call Dr. Bunnell? What would he say? Would there be tests? I cannot even imagine how scary a CT-scan would be right now. Waiting to see if it's there. Actually, I can imagine it, which is why this is all so very hard.

(More on yesterday's Poisonwood Bible passage soon. I just had to get this off my reconstructed chest.)

Thursday, June 20, 2013

Good Words: The River

Tonight, my most favorite excerpt from one of my most favorite books, The Poisonwood Bible. More to come on this soon...

"Leah Price"
By: Barbara Kingsolver

"Once upon a time," Anatole says in the dark, and I close my eyes and fly away on his stories. ... Usually we start with five hundred years ago, when the Portuguese came poking the nose of their little wooden ship into the mouth of the Congo River. Anatole peers from side to side, pantomiming Portuguese astonishment.

"What did they see?" I always ask, though I already know. They saw Africans. Men and women black as night, strolling in bright sunlight along the riverbanks. But not naked--just the opposite! They wore hats, soft boots, and more layers of exotic skirts and tunics than would seem bearable in the climate. This is the truth. I've seen the drawings published by those first adventurers after they hurried back home to Europe. They reported that the Africans lived like kings, even wearing the fabrics of royalty: velvet, damask, and brocade. Their report was only off by a hair: the Kongo people made remarkable textiles by beating the fibrous bark of certain trees, or weaving thread from the raffia palm. ... There was no written language, but an oral tradition so ardent that when the Catholic fathers fixed letters to the words of Kikongo, its poetry and stories poured into print with the force of a flood. The priests were dismayed to learn the Kongo already had their own Bible. They'd known it by heart for hundreds of years. 

Impressed as they were with the Kingdom of the Kongo, the Europeans were dismayed to find no commodity of agriculture here. All food was consumed very near to where it was grown. And so no cities, no giant plantations, and no roads necessary for transporting produce from one to the other. The kingdom was held together by thousands of miles of footpaths crossing the forest, with suspension bridges of woven vines swinging quietly over the rivers. ... Sometimes, when I have relapses of my old demon, I lie in the crook of his arm and he comforts me this way, talking to me all night long to stave off the bad dreams. ...

Now they are walking home, Beene. With baskets of palm nuts and orchids from the forest. They're singing. 

Songs about what? 

Oh, everything. the colors of a fish. And how well behaved their children would be if they were all made of wax. 

I laugh. Who are they? How many? 

Just a woman and a man on the path. They are married. 

And their troublesome children aren't with them? 

Not yet. They have only been married one week. 

Oh, I see. So they're holding hands. Of course. 

What does it look like there? 

They are close to the river, in a forest that has never been cut down. These trees are a thousand years old. ...

But down on the path where we are, it's dark? 

A nice darkness. The kind your eyes grow to like. It's raining, but the branches are so thick that only a little mist comes down. ...

What happens when we come to the river? 

We'll cross it of course. 

I laugh. As easy as that! And what if the ferry is stuck without a battery on the other side? 

In the Kingdom of Kongo, Beene, no batteries. No trucks, no roads. They declined to invent the wheel because it looked nothing like trouble in this mud. For crossing the river they have bridges that stretch from one great greenheart tree to another on the opposite bank. 

I can see this couple. I know they're real, that they really lived. ...

"But what if it's a huge river," I asked him once -- "like the Congo, which is much broader than the reach of any vine?"

"This is simple," he said. "Such a river should not be crossed." 

If only a river could go uncrossed, and whatever lay on the other side could live as pleased, unwitnessed and unchanged. But it didn't happen that way. The Portuguese peered through the trees and saw that the well-dressed, articulate Kongo did not buy or sell or transport their crops, but merely lived in place and ate what they had, like the beasts of the forest. In spite of poetry and beautiful clothes, such people were surely not fully human -- were primitive; that's a word the Portuguese must have used, to salve their conscience for what was to come. ...

Tuesday, June 18, 2013

Unpublished Status

I joined Facebook relatively late. For years, I had proudly and stubbornly declared, I'm not on Facebook, not because I had anything against it, but just because I figured I didn't need anything else in my life that would take up time.

When I was on maternity leave with Annabel, however, I had more time, lightened up a bit, and decided that Facebook sounded kind of interesting.

At first, I was completely overwhelmed. I had only about 25 "friends," including several people that I hadn't heard from in years. While this new social space was great in many ways, it was also so very strange. With the click of a button, I could peek into the lives of people I barely knew and they could peek back at me. It weirded me out, but it absolutely intrigued me at the same time.

At first, Brian was totally against joining Facebook and he couldn't believe that I had converted to the dark side. He's a private person, often uninterested in sharing his "status" with me, never mind with the rest of the world, and he doesn't waste a second of any day. But it turns out that Facebook can distract even the most purposeful of people because one day soon after I joined, I caught Brian scrolling through my News Feed. I gave him a hard time and we had a good laugh about it. Then I convinced him to get his own account. He did, although he very rarely checks it.

Since then, Facebook has absolutely fascinated me; for so many different reasons. On a high note, it's been an incredible way to connect and reconnect with people whose path otherwise doesn't cross mine very often. I may not see those people, but I care about them, and it's nice to know how they're doing.

On a low note, in some of my weak times, I get pissed that Facebook has the ability to make me feel like total crap. I'll see photos from paradise and be jealous that other couples somehow find time to fly away on vacation together. I'll see snapshots of kids' elaborate birthday parties or afternoons with their moms in the park and I worry that I'm not giving my kids all that they are giving their's.

Then there are times when I'm just downright confused. For instance, I don't feel right offering my condolences for a family death over Facebook, but I don't feel right ignoring that news, either. I feel like an awful person scrolling over a photo of a little kid who beat cancer, but sometimes I just don't want to think about that.

Other times, a Facebook comment on a blog or on a photo fills me with pride and joy. And yet other times, Facebook draws me in and then leaves me feeling empty. I can't even really explain why.

*  *  *

A few weeks ago, I sent off a book proposal and some sample writing to a literary agent to inquire about the possibility of getting published. When I didn't hear back for so long, I figured that I never would. I decided I needed to cast a much wider net so just yesterday morning, on a trip with the kids, Brianne, and James to Barnes & Noble for summer books, I escaped for five minutes and found a book on writing query letters and finding an agent. I was so excited to get back to work on this little dream of mine. 

Yesterday was a beautiful day and at dinnertime, Brian and I took the kids to a picnic at the elementary school that Teddy will attend next fall. The kids climbed and slid and emptied wood chips from their Crocs for a while until the skies quickly darkened and we saw lightening in the distance. It was time to go home. 

By the time we got home, it looked like night. We shut the windows, turned on the AC, and tried to calm Teddy's nervous questions about thunder and lightening.  

The kids settled down and I checked my email. I was shocked to see a response from the agent. She wasn't interested in my work, and given that, I was so impressed that she took the time to write an incredibly thoughtful, honest, and helpful email that offered a few opening lines of encouragement and then a few paragraphs of constructive criticism, advice, and information from her own experience. I have to think a lot more about what she said, but last night, I was totally up for the challenge. 

This morning, I woke up like I usually do -- early -- and ready to start my day with the one thing that Dr. Bunnell says will reduce my chance of recurrence (exercise). Walking down the stairs, however, I tweaked my back and I felt an onslaught of pain. I could barely walk. 

When I crawled back in bed (literally), I was terrified. Was a tumor at the root of this injury? Could it happen this suddenly? I felt that hair-raising, paralyzing type of fear that I have been happy to have distanced myself from for a while now. Brian took care of me and repeated that I had thrown my back out. Seventy three percent of me believes him. 

Since I can barely walk, my entire day's plan was completely derailed. No CrossFit, no train, no office, no picking up my kids, no playing in the neighborhood (no cooking, but that's every day). Instead, I was back to faking for Teddy and Annabel that I feel fine, because they worry when I don't. In fact, Annabel arrived to my bedside this morning with her icepack bumble bee and I was so frustrated that I couldn't scoop her up and hug her for being so sweet. 

I haven't posted a blog since last Thursday. That doesn't mean I haven't written one, because I have; it's just one of those that has remained in the Unpublished category. Today, that category has me thinking. 

It has me wondering about why I continue to publish here, and why I want to be a published author at all. I know why I write -- because I need to -- but I have been thinking more and more about why I allow/want/need others to see what I write (aside from my kids who I will gift all of this to one day). Does it have to do with the validation that Oprah spoke about? Why does it matter to me if people "Like" or just "like" what I write (because it does)? Should I bother turning parts of this blog into a book? If I do, for whom would I be doing that? For what? Would it all become less pure? Less real? Less me? 

Last night after the kids went to bed, I completely broke my sugar pact (as I have several times in the last few weeks). Brianne and I, both kid- and husband-free, grabbed a frozen yogurt together. I topped mine with chocolate sauce, whip cream, and Oreos and savored every bite. When we got back to our house, we noticed the spectacular rainbow, then the double rainbow. I took about fifty photos, and, judging from Facebook, so did everyone else across the state.   

As my family knows, I am kind of obsessed with rainbows. As cliche as it may be, I just can't get over how beautiful and totally unreal they are and so I get a little bit excited when I see one. A few years ago, Brian found this YouTube video and told me that it reminds him of me. I laugh to the point of tears every time I watch this ridiculous clip and think of Brian comparing me to this nutcase.  (Warning: 30 seconds of this video is plenty. You'll never get back the other few minutes of your life!)

Anyways, last night when Brianne and I got home, Teddy was (no surprise), still awake. Brian was getting ready to watch the Bruins game and since he had been listening to Teddy yell down from his bedroom for an hour, Brian was understandably frustrated. 

I was refreshed, so I went up. Teddy, on the verge of tears, told me that he didn't understand why it was light out. When I went to bed it was dark out and now it's light out. He was really confused and since I was powered by an hour away and a great dessert, I had the patience to kiss him and hug him and explain why it had been so dark an hour earlier and why it was light again now, despite that it was past eight o'clock.  

Then I did something that the how-to-put-your-kid-to-sleep books would most certainly frown upon. I asked Teddy if he wanted to get up and see the rainbow. He's Teddy, so he'd get out of bed to  look at the pavement if I suggested it. So we stood there, peering through his shades, staring up at the rainbow. And no, we did not sound like the crazy camper in the video (although I am still laughing about that). We were just quiet for a few seconds, until Teddy started asking me why Uncle Seamus's truck was at the house. Time for bed buddy, and after a few more fits, he was asleep. 

Later last night, I scrolled through Facebook. Rainbows and the Bruins scattered my News Feed. 

Now, as I lay uncomfortably in my healing chair, I admit that I feel lost. I'm alone in the house, I can barely move, and I don't have work that is pressing at this very moment. And, I admit, I'm deflated about the agent's critiques that were, really, truly, 100% right. 

I sit wondering about my back and my blog. What am I when I can barely even get up and walk? Why, yesterday, was I so determined and today, I'm totally deflated? 

I don't have answers. 

So I keep thinking. And I keep writing. 

And I realize that these days, Facebook, tweets, blogs, texts (and, likely, programs I don't even know about) allow us up-to-the-minute information about each other's lives. These outlets let us all share our cheers for the Bruins, and our pictures of paradise, kid parties, and rainbows. Sometimes that news feed fills us up and sometimes, it drains us. 

There is so much of my journey, and likely, your's, that has gone unpublished. Maybe, sometimes, that's a good thing. Because behind each of those rainbow pictures yesterday, I wonder how many people really saw that rainbow -- not through the camera lens on an iPhone; not with Instagram filters to burst the color; not with plans to post to Facebook. I'm certainly no example because I really didn't. Instead, I clicked and snapped and wondered how I could work one of the photos into a blog.

But then, I whispered to Teddy to get up and I showed him the rainbow. That's when I saw it. And nothing -- not a photo or a blog or a Facebook post -- could ever explain the magic in that moment. Published or unpublished.

[Insert your own rainbow photo here.

*  *  *

Click HERE for a fabulous and relevant New York Times Op Ed ("I Know What You Think of Me") that I found after I published this post. 

Thursday, June 13, 2013

A True Story

I have an absolutely abysmal sense of direction. Almost every workday morning, I try a mental exercise in hopes that I could one day improve this dysfunctional part of my brain. As the elevator in my office building makes its short climb up to the 16th floor, I try to figure out which way I should walk when the doors open. Years later, I still only get it right about half of the time. I know I shouldn’t be surprised by my failing score, especially considering that when I walk out of a store, public restroom, or restaurant, I often can’t figure out from which direction I came. So I just walk confidently one way or the other and I quickly figure out if a U-turn is necessary (more than half the time, it is).

Brian likes to say that my brain melts when it gets near the part of the south shore where Route 128, I-95, and I-93 all join together or overlap or something that’s really confusing. I admit, my mind does feel like it’s melting when I’m in this vicinity. Despite that I have driven on those roads for twenty five years, at least once every month, I merge onto the wrong highway before I realize that I’m headed in the wrong direction. My family gets a kick out of it, and I chuckle along with them. But I won’t lie—it drives me absolutely nuts that my brain just will not work right when it comes to direction. I get so mad that no matter how much I try, no matter how much I think about it or don’t think about it, no matter how much I listen when Brian or my Mom tries to explain it to me, when I’m stopped at a light trying to figure out which direction to go, my brain turns to a frustrated pile of mush.

*  *  *

Yesterday after my Herceptin infusion, I met with Dr. Fasciano. I had arrived at that appointment with something very specific to talk about with her—what she thought about me accepting an invitation to be a member of Dana-Farber’s Patient and Family Advisory Council. I had some concerns about whether I was mentally ready for a role on the council and I wanted to my therapy lady’s honest and educated opinion before I committed to something I couldn’t handle. 

I had absolutely no plans to talk about anything else in those valuable 50 minutes. But I should have remembered that plans have a very fluid meaning for most people visiting the Yawkey building.  

A short time into our conversation, I was staring out the window, trying to see through my tears. I was, once again, unsuccessfully trying to catch those tears before they fell and I was, once again, talking about the child or children that Brian and I will never have. 

Yesterday morning, I cried to Dr. Fasciano about how frustrated I was with this issue, despite that I had never before consciously realized my frustration. Sadness, yes. Anger, yes. But frustration? This was a new realization. I told Dr. Fasciano that I felt like I wasn’t getting anywhere with this "grief"; that it still popped up when I least expected it to, and that it still hurt. A lot. I’m just so frustrated, I repeated to her. I think she got the point.

I anticipated what Dr. Fasciano was going to say. She had said it to me several times before. Grief is a process. You need to let yourself grieve this loss. Because it is a loss. I listened, from a distance. Every other time my therapy lady has said this, I’ve thought the very same thing—How do I grieve the loss of something that I never had? Despite that Dr. Fasciano told me that Brian and I had every right to feel this way, I still wondered if that was true. Part of me felt like I was doing something wrong for grieving a child that was never even conceived.

But as Dr. Fasciano talked, my mind drifted both into and away from what she was saying. It drifted to several random thoughts that somehow, despite their angles of terrible tragedy, brought me some odd and indescribable peace. I thought about how sometimes when I run, I run through the cemetery. I stop at Scott’s grave and at a nearby bench dedicated to a precious baby girl who lived a bold and beautiful life that lasted only about one day. I have written several unpublished pieces about my time in that cemetery, never having successfully figured out why I go there, or even more strangely, why I've found peace there.

As Dr. Fasciano continued on, a quote I had read in a recent A Word A Day, came to me again. All of the sudden, I felt an overwhelming sense of clarity.

Some stories are true that never happened.

Finally, I understood. My time in that cemetery wasn’t some strange secret I have been keeping. It was just my time to grieve. Because cancer took something from me and my family. And that baby was a true story. Even though he or she never happened.

* * *

On the way home from Dana-Farber yesterday, my Mom and I stopped to do a quick errand at a shopping mall. I had to use the restroom so I walked down one of those long and spooky mall hallways towards the ladies room. At the end of the hallway there was a sign lit up in one of those bright advertising frames. The sign said, "You are closer to saving a child than you think." I don't necessarily believe in signs, but this literally was a sign, so I think I will let myself believe in it...

Wednesday, June 12, 2013

Good Words: Stories

Some stories are true that never happened. 
~ Elie Wiesel

To be continued...

Sunday, June 9, 2013

Kid Question: Why are Mommys and Daddys so brave?

This week I am excited for the third of the writing workshops that I have been leading as part of Writing Saves Lives. The upcoming writing prompt is based on a book that I referenced in an earlier blog.  I've now read most of the questions and answers in this compilation and they are fabulous -- smart, witty, informative, simple, yet wonderfully complex.

After reading these kid questions and adult answers, I had an itch to write my own. The question I wanted to answer was this -- "Why are Mommys and Daddys so brave?" It came from a conversation I had with Teddy last summer. During a thunderstorm he asked me if I was afraid of thunder and lightening when I was a "wittow kid." I told him that I was (and really, I was!). Then I started to wonder why I wasn't afraid of it anymore. I still don't really know, but writing this piece helped me understand it a bit better.

Why are Mommys and Daddys so brave?  

Mommys and Daddys are brave because they love you. Being brave is a funny thing; it doesn’t mean that you’re not scared. Everyone gets scared, even Mommys, Daddys, pets, and superheroes. Maybe they don’t get scared about things like thunder or lightning or going to bed without a light on. But they still get scared every now and then; just about Mommy, Daddy, pet, or superhero stuff.

Being brave means that you care more about something else than you care about being scared. Mommys and Daddys always care more about you than they care about being scared, so they end up being strong and brave. Just for you. You're pretty special, huh?

The good news is that being brave gets easier as you get older. For example, the first time you go on a sailboat, you may be scared that it’s going to tip over (I was really scared of that when I was little -- just ask my family who had to listen to me scream!). But once I went on the sailboat a few times and it didn't tip over, and once I watched lots of other sailboats in the water and saw that they didn't tip over, I realized that I didn't need to be scared. Instead, I could just sit back and enjoy sailing on the beautiful ocean.

But being brave isn’t just about not acting scared. Being brave is also about being smart, and Mommys and Daddys are smart. They are always thinking about what’s best for you. For instance, it’s not smart to swim during a thunderstorm, is it? It’s not brave to do that; it’s just dangerous and wrong.

Mommys and Daddys know this funny secret – that sometimes, being scared is a good thing! Because sometimes, being scared can keep you safe. For instance, if your friends decide to say or do something that could hurt someone or hurt you, maybe you get scared to join them. That scared feeling inside is telling you to be safe and think about what your Mommy and Daddy have taught you. It’s not brave to say or do something that could hurt someone, just like it's not safe to swim during a thunderstorm. It’s brave to do what you know is right. And if for some reason you have done something wrong, it's brave to be honest about it. Your Mommy and Daddy have already learned all of these lessons because a long, long time ago (before there were even iPhones, but after the dinosaurs) they were kids just like you.

Being brave takes practice and hard work, and I bet that your Mommy and Daddy work very hard for you! They take you new places and teach you how to do new things, like swim or ride bikes or play music. Mommys and Daddys didn’t always know how to do these things and they may have been scared when they first learned how to. But they worked hard and practiced and they got better and better. Being brave is just like learning to ride a bike – the more you do it, the better you get at it, and even if you fall off, you can get back on again. Since Mommys and Daddys are older than you, they’ve had more time to practice being brave (and riding bikes). So they’ve gotten really good at it.

Like I explained at the beginning, Mommys and Daddys are brave because they love you. And when you love someone, you help them learn to ride bikes or swim or play music. When you love someone, you also let them go off and explore the world. It takes a lot of bravery for a Mommy or a Daddy to let you go off and explore the world. So it’s lucky they’ve had lots of practice while you were little. Learning how to be brave.

Friday, June 7, 2013

Rain or Shine

Around this time of year, a lot of people seem to be watching weather reports. I can hear them now -- principals and college deans trying to decide if graduation ceremonies need to be moved indoors; high school girls wondering if the rain will ruin their up-dos for prom; athletes hoping their game doesn't get postponed, teachers hoping their field day does; party planners kicking themselves for not renting a tent; awesome families hoping that their annual softball tournament for their loved one isn't a washout.

I don't usually bother to check the weather forecast, but this week, I have been curiously peeking at tomorrow night's projections. Because tomorrow night, Teddy and I will travel to the one and only Fenway Park to watch the Boston Red Sox take on the Los Angeles Angels.

*  *  *

Earlier this week, a colleague of mine was selling two reasonably priced grandstand tickets for Saturday night's game. The moment I read Angels in his group email, I hit Reply. 

Teddy knows almost all of the players on the Angels' roster, as he loyally follows the professionals who wear the same uniform as his Little League team. He even told me the other day that Mike Napoli used to play for the Angels. I Googled it. He was right. It wasn't a stretch to assume that Teddy would love to see his favorite two clubs play one another; he can't wait.

Teddy and I are perfect baseball game companions. We both silently adore the initial sight of the park and the sound of the national anthem. Then we quickly get excited about the many different snack options. We're both totally convinced that we're going to catch a foul ball (we have never even come close), we would rather that the strangers seated around us not bother to make small talk, we love the jumbotron, and we're both ready to go home by the end of the 6th inning regardless of the score.

The only real differences in Teddy and my feelings about a Red Sox game are that I am far less fascinated by the Green Line ride to and fro, I don't need my ice cream to come in a mini plastic baseball helmet for $5 extra dollars (a regular cup is fine), and I couldn't name half of the Red Sox players that Teddy could. In the end though, we both end up in the very same place -- exhausted, full, and in agreement that we had the time of our lives.

Me and Teddy at his very first Red Sox game almost exactly one year ago. 
I've been watching the forecast this week because at first, I wasn't so excited about sitting in the cold hard rain to watch a baseball game. For me, so much of the joy of Fenway is getting a chance to sit outside with an awesome view of Boston. I didn't really want me and Teddy to be huddled under a poncho.

So I got to thinking about weather, and plans, and weather changing those plans.

My thoughts here have evolved largely because of this quote I came across thanks to Professor Bee who mentioned it at a writing workshop at Dana-Farber this week. In her 1978 book, Illness as Metaphor, Susan Sontag described illness as follows:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

I agree with the quote's implication that many of us consciously or subconsciously group people into a "sick" or a "healthy" bucket rather than thinking of ourselves as people who move fluidly between two worlds. I definitely make these oversimplified buckets and even when I do, I feel strange about it. Just yesterday I referenced the time "before I got sick." As I said it, I knew how wrong it sounded. Cancer's just not that simple. Because while the tumor was hiding and growing aggressively inside me, I never even felt sick. I had absolutely no idea that it was there. Finding the cancer and getting treated for it were what made me feel sick. And feel better. See how strange it is? 

Susan Sontag's explanation helps me understand my place in, and in between, these two kingdoms. Prior to August 8, 2012, I never would have imagined myself living in the kingdom of the sick, no matter how hypochondriacal I am. But now, I realize that no one, including me, can fully avoid that dark kingdom. At some point, we will all identify ourselves as citizens of "that other place." Unfortunately, some people live in the kingdom of the sick much longer than they live in the kingdom of the well and I hope that modern medicine can improve that terrible imbalance. Some people live deep in the dark kingdom, while others roam around the outer borders. In other cases, one only knows the dark kingdom and none of the lighter one; those are the most rare and tragic of cases. The vast majority of us, however, will be lucky enough to be dual citizens.

Once we learn of our dual citizenship, life changes a bit, or at least, mine sure did. 

For instance, let's consider my lead up to tomorrow night's baseball game. Here's what I've been thinking. 

I don't want it to rain for me and Teddy's big night out. I want everything to be perfect for him. For me. A great game. A big win. Clear, warm air. 

So I watch the forecast. But it's New England, and forecasts can change quickly. So I wonder, What's the point? 

I decide just to hope for the best. To plan, gently, for the worst. I remember that I can't avoid the rain, just like I can't avoid the kingdom of the sick. 

I want as many innings as I can get sitting out in the clear summer air at Fenway Park. But even if I only get one inning, huddled under a poncho with my little guy as he teaches me the names, positions, and numbers of all of the Angels and Red Sox players, that's pretty awesome too. So I'll take the one inning in the rain. And I'll cherish it forever. Because sometimes, life in the kingdom of the sick can be even more awesome than life in the kingdom of the well. 

*  *  *

As if tomorrow couldn't get any better for the little lad, first thing in the morning he will throw out the first pitch of the 11th Annual Todd J. Schwartz Softball Classic. We are honored that the incredible Schwartz family thought of us and we can't wait to be there with them tomorrow. For Todd. Rain or shine. 

Annabel, also loving her sweet snacks, and sporting her Angels and Red Sox gear. 

Sox Game Photo Update
(Posted Sunday June 8th)

No surprise, most people on the T didn't know what to make of Teddy's outfit.   

He was exhausted after two hours, which in baseball these days is only the mid-point of the game.  He talked to me the whole way home, though.  It was amazing.  

Wednesday, June 5, 2013


I applied to Harvard as a senior in high school and, come to think of it, five years later when I decided to go to law school. I got rejected both times. Truthfully, I was totally OK with each of those thin envelopes with the Harvard seal and my name on it.

My colleague, mentor, and friend, Mark is a double Harvard alumn, having received two acceptance letters to my two rejections. Last Tuesday at lunch, Mark mentioned that he had an extra ticket to the afternoon portion of that Thursday's Harvard commencement at which Oprah Winfrey would deliver the keynote address. I nearly jumped out of my seat and yelped something like, Yes, pick me, pick me!!! Mark, playfully stunned at my enthusiasm, asked, So you want to go?

Ah, YE-SSSS!!??!!! I exclaimed. And so I went to Harvard, not as a student or as an alumn, but as a very dedicated fan of Ms. Oprah Gail Winfrey.

* * *

When Oprah ended her show two years ago, I, like millions of others, lost one of my main sources of information, inspiration, and entertainment. I threw a party so that I could watch the very last episode with some of my favorite people (five guests count as a "party," right?!?). Brian mocked me by taping a number 25 to his back, but I didn't mind because I know that deep down, he loves Oprah, too.

Brian, almost exactly two years ago.
Brianne, Seamus, Rena, Elise (Brianne's younger sister), and my Mom were all good sports about my emotional gathering despite that their level of Oprah-love varied greatly. Rena even came dressed in costume and threw out little toy cars from the big padded boobs inside her dress while exclaiming, You get a car! You get a car! For Brianne and Seamus, the last Oprah episode was their first and, for the most part, they kept their criticisms to themselves. Everyone left with a party favor – a CD of all of my favorite songs associated with Oprah. Onto the discs I burned Tina Turner’s The Best (remember the 50th birthday bash?), along with Lady GaGa’s You and I (performed for Oprah atop a giant high heel shoe), and ... I digress.

Last Thursday, with the help of some very generous friends, I was able to secure two seats in the third row on the jam-packed Harvard Yard (my Mom, another huge fan, ended up rearranging her work schedule at the last minute and taking Mark's fourth ticket that had freed up). I guarded our seats for two solid hours and when I spotted Oprah for the first time, I couldn't believe she was actually a real-life human being, even though I had always loved her so much because that's just what I thought she was.

I think I caught Oprah looking at me. (I wish!)
My husband would willingly attest to the fact that my unconditional love for someone does not necessarily spare him or her from my honest feedback or constructive criticism. And so, while you may expect me to write about how Oprah made my inner light shine, I have a much different critique of her Harvard commencement speech.

Oprah’s speech was, above all, safe. I interpreted her main messages to the 2013 Harvard graduates as follows:

1. Everyone will fail at some point. Learn from those failures.

2. Follow your inner spirit and do whatever makes you feel alive.

3. Give to others and you will significantly enrich your life.

4. Know that all human beings are connected by our common need for validation.

Aside from #4, I thought the other three themes were quite ordinary and a bit overdone in the world of commencement speeches. Oprah could have rescued these messages from their mundaneness had she fleshed them out with great stories, but most of Oprah's stories were, in my mind, mediocre.

Oprah opened with an anecdote about receiving President Faust’s invitation to speak via a telephone call one year ago. The call came at a time when Oprah’s newborn network was failing. Oprah admitted that she was upset about this failure, even “embarrassed.” She wondered why President Faust would ever have asked her to speak to Harvard graduates at a time when she was clearly not successful.

Nevertheless, Oprah accepted President Faust’s invitation and vowed to turn the network around by the time she came to Cambridge to speak. According to Oprah, she did just that, although the academic in me wanted a footnote of data for proof. The crowd applauded this success story and since my right hand was occupied by video taping her on my iPhone, I clapped my left hand against my leg. But my heart wasn’t so much feeling it.

I liked the theme of following your inner passion, but again, I thought that the personal details were a bit lacking. The "giving back" details were better, and no one can (or should) deny Oprah’s goodwill.

Oprah depicted her "need for validation" point by explaining that in the 35,000 interviews that she has conducted in her career, she found that when the cameras shut off, every interviewee (even Beyonce, who, by the way, was sitting just yards away from me) always asked the same thing—“Was that OK?”

I agree that all people need validation—to feel accepted, valued, appreciated. I figure that’s why there’s no “Dislike” button on Facebook—we all just want to be “Liked” and to receive a comment of great praise—Your kids are so cute! You look so beautiful! Love that sarcastic quote about motherhood! I wish I had that plate of food in front of meI understand this as much as anyone, and I can't deny that I crave the comments that people post in response to one of my blogs. Everyone wants to be seen and heard.

Just yesterday, however, as I distracted Mark from work, we both arrived at a realization about an irony in Oprah's commencement messages. She had clearly defined her own success based on her ratings. She (deservedly) bragged the fact that the Oprah show held the number one position in its time slot for 23 straight years. Oprah decided not to share what failure or success at the Oprah Winfrey Network really meant, although she implied that ratings told all. But I wanted more. I don't care about ratings. In my opinion, some of the very best shows never "succeeded" (Studio 60 on the Sunset Strip?!?), and despite Two and a Half Men's popularity, I don't consider it successful.

Since then, I've thought a lot about the meaning of failure and of success; of mistakes and of what makes me feel alive. As Mark and I talked yesterday, we realized that while Oprah preached to graduates to follow their inner light, she implicitly (or even explicitly) explained that at least in the past few years, she measured much of her success by TV audiences' acceptance or rejection of her work. Perhaps she is so rich because part of her does care about those literal measures of success.

But part of me thinks a much more interesting message would be that in a way, ratings don't always matter. Yes, we all need validation, but does it always matter how many "Likes" we get? Perhaps the young man with homophobic friends who posts words of acceptance doesn't get a single "Like." But his post is so much more meaningful than any "well-liked" blog I may write and distribute to my accepting friends.

I think a more interesting speech would involve Oprah asking the audience to think about the meaning of failure and of success. Does one "succeed" merely because he or she earned a degree from Harvard? Not to downplay the accomplishment, but I don't necessarily think so. Are the graduates who cross the stage more successful than the janitor who mops it or the facilities people who fold it up? Depends a heck of a lot on where each of them started, and with what level of honesty and integrity he or she walks, mops, or folds, now, doesn't it? Does one fail because few people like what they do? Is this blog a success because I write it? Because you are reading it? If a tree falls in the woods and no one hears it, does it make a sound? (Joking on that last one, although I admit, I do have internal debates about this question.)

When I worked as an attorney in a humungous corporate law firm, I often grappled with the meaning of success. Was I successful if I billed 2,400 hours in a year? Was the actual work behind each hour what mattered? If I didn't meet my prescribed "target" but I got home to sing a song to my kids every night before they want to bed, was I a failure? Was an hour at lunch with friends in the cafeteria time "wasted"? I never thought so, but often, I felt like the culture wanted me to.

In the world of cancer, these concepts take on a whole new meaning. Does one "win" because he or she beats cancer? Have I "lost" if I don't? What if my treatment can never actually "checkmate" my cancer? If Herceptin fails me, is it still an unquestionable success? I'll answer that last one -- Yes, or, as my Dad often asks playfully to such obvious questions, Does a bear shit in the woods?!

Yesterday, as Mark reflected on his own experience battling HIV decades ago when there were few drugs to treat it, I told him about something I have been grappling with -- Is acceptance of my cancer a surrender to it? Can one accept something and fight it at the same time? 

Mark told me that years ago, he had these same questions. In the end, he felt that his disease would run its course, whatever that course may be, and his goal was simply to "stay in possession of himself" along the way. Stay in possession of myself. I love that.

In fact, I'd like to have heard Oprah talk a bit more about the turbulent parts of her journey. Sure, we all applauded at her statement that she turned her network around. But I'm far more interested in how and why.

I'll always love Oprah, no matter how I may critique this or any other commencement address. I believe that she is deeply good and honest and sincere. She made a career out of telling people's stories and shedding light on topics and angles of reality that few others had ever uncovered. She built homes and schools and inspired generations. She put thousands of men and women through college and made others believe that that path was possible. She broke down barriers of gender, race, body image, and personal relationships. She gave people hope, and even if she's not your cup of tea, you've got to give her credit for that.

After almost a week of Oprah reflection, however, I've come to an unexpected realization. Most often, our greatest teachers are not the ones that draw audiences by the thousands (see below). I don't need to sit for two hours to save a seat to hear my greatest teachers speak to me. I just have to call my parents, talk to my husband, or visit the office next door. Finally, I've realized that yes, Mark has two degrees from Harvard. But in my mind, those are the smallest of his many significant life successes.

Harvard Yard -- May 30, 2013

Saturday, June 1, 2013


Sometimes I feel like a pretty experienced cancer patient. Despite months in a cancer cocoon, I’ve picked up a decent amount of medical lingo and I can rattle off the names of several chemotherapy drugs like they’re my phone number. I know the ins and outs of the Dana-Farber parking lot and the “Dining Pavilion” (if you look for “Cafeteria” on the directory board, you won’t find it). I know just when to put my arm out for the Yawkey 9 check-in person to tape the ID bracelet around my wrist, and even given my terrible sense of direction, I can move between Dana-Farber, Brigham & Women’s Hospital, and the Shapiro Cardiovascular Center with ease.

But then there are times when I feel like I don’t know crap about crap. That happened a few weeks ago. Someone asked me about “my most recent scans.” Hum. What scans? I thought to myself. Had I had scans? 

Sometimes when I try to think of the month or even the year, I blank out for a moment or two. That happened pre-cancer too, (although less so, pre-kids), so I’ll continue to blame the kids and not the cancer. But even so, when faced with the scans question, I had to stop and think if I was missing something. A few thoughtful seconds later, I had convinced myself that my gut reaction was correct – I had not had any “recent scans.” I admitted that I had absolutely no idea why.

Obviously, this made me think...Why don’t I get scanned? If, Heaven forbid, I fall in the small percentage of people for whom Herceptin doesn’t work, wouldn’t it be good for them to find the tumor that could be growing in my chest wall or my brain or wherever as early as possible? Maybe they wait until after the year of Herceptin to starting the scanning? I wondered about this, but didn’t know if I really wanted an answer. (My rule with my doctors is not unlike my rule with high school students or even clients—I don’t typically ask questions that I may not want the answer to.)

Last week, however, I woman-ed up, asked Danielle why I don’t get scanned, then braced myself for the answer (no, I didn't have my hands over my ears although I thought about it). She explained that for patients like me, there is no difference in life expectancy if they find the metastasized tumor early, through a scan, or later, because I end up feeling something that flags it. She stressed that they hope to have gotten all of the cancer cells with the chemo and that Herceptin does the rest. Danielle explained that many people have one or more odd growths somewhere inside their body and while those masses are not necessarily dangerous, for a cancer patient, they would cause much anxiety and likely, unnecessary biopsies. We also don’t want to expose you to anything that could increase the possibility of a recurrence when there's no data to show that it's useful, she concluded.

As much as I valued my cancer cocoon where I would never have asked a question like this, I have to admit, it felt oddly liberating (although still dreadfully uncomfortable) to know the truth.

But there’s another piece of the truth that I want to share; a much better one. At the end of my appointment with Dr. Bunnell, my Dad said something in his enthusiastically optimistic tone about how far they have come in the last five or ten years. Like me, I think he wanted to hear some good news to wrap up the appointment. Dr. Bunnell agreed with my Dad. He said that Herceptin has changed his entire career—that prior to it, he had to tell HER2+ breast cancer patients that he was "so sorry." Obviously I've known that the protein had previously been considered a death sentence but unwittingly imagining Dr. Bunnell delivering that news to me and my family in a windowless exam room brought a flash of horror. Luckily, I kept listening.

Dr. Bunnell went on to say something that, like so many things my doctors tell me, I have repeated in my head countless times since. He said that he believes that HER2+ breast cancer will be the first type of cancer that “we cure.” That sounded as awesome last week as it sounded the first time I heard it back in August in the same telephone call when Dr. Bunnell he told me that my cancer was HER2+. But he wasn’t done and this time, he added something that I don't remember from back in August (although back then, I may have just not understood its importance). He continued, “And that’s in the metastatic state.” I froze and the hair on the back of my neck stood up.

I started to cry—one of the happiest, most hopeful cries I have ever cried. So if this comes back, you may be able to do something? 

We would do something, he assured me. 

Of course, I know that that “something” wouldn’t necessarily get me to my kids’ high school graduation or to meet my grandchildren, but I know exactly what it would get me. It would get me the hope of being able to be there despite that the cancer had spread. And no matter how much I write or what words I choose, there is absolutely no way I could ever explain the electric feeling of hope that Dr. Bunnell's words gave me last Wednesday morning and many times since.

* * *

In a small apartment in Dorchester, Julia is living her last days. A constant flow of morphine makes her very drowsy. Her memory, and her ability to lift her hands or feet is almost completely gone. When her daughter, who I'll call “Nina,” texted me a photo of the two of them on Nina's high school graduation day the week before last, I saw that Julia’s face was so bloated that she looked like an entirely different person. But still, she was smiling.

About a year and a half ago, as my colleague and I worked with Julia to plan for her children’s future without their mother, she had already defied all odds. I remember Julia saying that she wanted to live long enough for Nina to graduate from high school. But at the time, that was a year and a half away. That's impossible, I thought to myself while I said something out loud that conveyed a positive and hopeful message. Now, I'm embarrassed that I doubted Julia.

From incredible individuals like Julia and Ashley, I have learned that brave mothers and daughters, fathers and sons, and wives and husbands will fight for the ones they love. They will defy all odds to survive for their daughter’s high school graduation or their brother’s wedding. They will dare to hope when so many others, despite their sincere well-wishes, are, secretly, grappling with what they see as an imminent demise.

In her book, The Still Point of the Turning World, Emily Rapp explains:

Most disturbing of all is a common reaction that is rarely questioned: what people view as the “tragedies” of others makes them feel better about themselves. If somebody else has it worse than you, you can walk around feeling lucky for a few minutes. In the weeks following Ronan’s diagnosis it upset me to think that Ronan and I had no purpose at all in this world other than to serve as reflections for situations other people feared. 

While I don’t question or judge the fact that the author felt this way (and had every right to feel this way), I have to admit that I do not share her sentiment. That doesn't make me better or worse -- it just makes my feelings and my perspective different. Personally, I don’t think that people generally see “the tragedies of others” and "feel better about themselves." Seeing Julia die of breast cancer doesn’t make me feel "better" about my potential cure. It makes me sad and mad that she doesn't get what I have. Seeing Ashley fight through risky surgery after risky surgery does not make me feel good in even the most minute of ways. It makes me wish that she could have gone home and healed like I did. These women are not "reflections for situations" that I fear. Do I fear those situations? Absolutely. But to say they are “reflections” implies that I care about these people only because I care about myself and that’s just not true. I think people, in general, are better than that.

In all honesty, if me having cancer makes someone feel better, I’m glad. I really mean that. I hope it makes a father leave work in time to kiss his kids goodnight when otherwise, he may have stayed late and missed them. I hope it makes an aunt or uncle visit with a niece or nephew even though it is extremely inconvenient to do so. I hope that it gives someone the feeling of being truly valued when he or she donates platelets for the first time or joins the bone marrow registry. I hope that my story makes a woman -- young or old -- celebrate when her mammogram or biopsy comes back negative. I hope that my life makes some other person love his or her life a little more, not because I'm a reflection of anything, but maybe just because he or she more clearly and peacefully understands that every person's time on Earth is precious. And the most precious of things are usually finite.