Tuesday, April 30, 2013

Good Words: A Song

"A bird doesn't sing because it has an answer, it sings because it has a song."
-- Maya Angelou

Sunday, April 28, 2013

An Evening for Bridget

I know that I write a lot about fear. I guess that theme kind of comes with the territory in a blog born from a cancer diagnosis. Over a month ago, I wrote a whole blog about the different kinds of fear that cancer has so graciously hurled, or slyly placed, at my mental doorstep.

As I wrote the Fear and Snow blog -- literally, as I was typing it -- I received a group email from Maggie inviting me to a fundraiser at which she was going to be speaking. I admit, when I glanced over a few key words (breast cancer, tragically, lost her battle, 35 years old) I felt like I had fallen through the ice upon which I so softly tread.

I didn't hesitate to purchase tickets for Brian and I to attend the event because, of course, we wanted to support Maggie and hang out with our wonderful mutual friends. When I went to order the tickets, I reread the title of the event -- An Evening for Bridget. I paid, and diverted my eyes away from any more information. I couldn't bear to see the photos of this 35 year old breast cancer victim.

Brian's parents kindly agreed to have us all sleep over in South Boston for the night. They would watch the kids and we would enjoy a night out just about 10 minutes away. The event is at the Seaport Hotel, I told them, so this will be perfect. 

It turns out that diverting your eyes away from information about an event -- like the location -- isn't such a good idea. I had us headed to the Seaport when in fact everyone was gathered at the Boston Harbor Hotel. Nonetheless, on a stunningly beautiful Boston evening, we arrived at the event with some of the nicest people we know.

I quickly learned much more about the purpose of the event -- to raise money for the Young and Strong program lead by Dr. Ann Partridge (Maggie's oncologist) from Dana-Farber. The program focuses on issues faced by women diagnosed with breast cancer while under the age of 40. Despite getting a little nauseous when I inadvertently came across a pamphlet discussing the new study about the 10-year Tamoxifen regimen that I am now on, I was really enjoying the night. I was so happy and honored to meet Maggie's family, Dr. Partridge, and even Kelly Tuthill who MC-ed the event.

(Side note. When I got to talking with Kelly Tuthill on my way to load up on the mac-and-cheese I had been eyeing all night, Brian started up a conversation with her husband. Completely oblivious as to who Kelly was, Brian threw out the generic, So, where are you guys from? Kelly's husband kindly answered that they were from the area; that his wife was the MC of the night and a six-year breast cancer survivor. Brian thought that was great, but still didn't put two and two -- or even one and one -- together until I explained it all to him afterwards. This charming obliviousness was topped by Maggie's story from her speech of her PCP telling her that her tumor was malignant. When Maggie told the crowd that her husband didn't know what "malignant" meant, there was a roar of laughter at Drew's expense. It's always fun to pick on the guys, especially because they're such good sports about it.)

Anyways, I was so excited when it was finally time to hear Maggie speak. I was so sincerely proud of her.

After Kelly Tuthill graciously opened the stage, Bridget's husband, Steve, approached the microphone. A very tall and handsome man, Steve held his youngest daughter, Chloe, in his arms. The way that Chloe clung to her dad was just the way that Annabel would cling to Brian. Chloe was wearing an adorable flowered dress and I'm sure that Annabel would insist on a Bruins, Red Sox, or Patriots jersey, but still, their mannerisms and their soft, light hair were eerily similar.

As you can imagine, I lost it. Aside from the We Bought a Zoo night, the August night in Falmouth, or one or two other breakdowns, I don't think the tears have ever flowed like they did as I watched Steve hold his little girl and talk about Bridget.

I didn't look around because I thought that would just draw attention to myself, but I'm pretty sure that my tears were inappropriate. Selfishly, however, I wasn't even in a mental state to care. I couldn't collect myself. As the photos of this beautiful woman, wife, and mother flashed on the screen behind her husband, I could do nothing to stop the waterfall. I didn't have a tissue so the tears just fell down my cheeks, down my chin, and onto the floor that I was hoping would continue to hold me up. At one point, I whispered to Brian that I may have to go. He said that was fine, that we could go, which is maybe why I decided to stay -- because when I contemplated actually leaving, I remembered why I had come -- to hear Maggie speak. I can do this, I told myself, and despite that I realized how totally self-centered I was being, I couldn't do much more than try to stand up straight and not sob uncontrollably.

If you don't want to hear more about why I was crying, please don't read anymore. If you do, you may want to grab some tissues so that your shirt doesn't look like my red dress did after the speakers were all done -- covered in tears and make-up and maybe a few boogers.

Bridget's story is an absolutely devastating one. With no family history and no warning signs, she was diagnosed with Stage IV breast cancer at age 35. She and Steve already had one beautiful daughter and Bridget was about halfway through her pregnancy with their second. One of Bridget's close friends from Boston College told me last night, By the time they found it, it was everywhere.

Bridget's doctors tried some chemo, hoping for a miracle, but when the chemo destroyed the placenta, they had to take the baby. Chloe was born an "extreme premie" -- just over one pound, and the photo of Bridget in her hospital bed beaming at her tiny new baby was incredible; it was gut-wrenchingly awful and indescribably beautiful, at the very same time. Now that I think of it, I'd describe last night, and maybe my whole battle with cancer, in the very same way.

There is so much more I could say about last night -- about Maggie's inspiring speech and Dr. Partridge's Young and Strong program. About Bridget and her devout faith. About how it felt to get out on the dance floor after shedding so many tears. I will write about about these topics one day, but I'm just not there yet.

To be honest, I sat down here today a bit disappointed in myself when I realized that this blog wasn't going to be about the amazing people who inspire me. I mean seriously, as I stood there sobbing, Maggie waited to deliver a speech about her own breast cancer journey. In fact, Maggie approached the podium just after Dr. Partridge informed the audience of the tragic news that the woman who spoke at this event last year had died just a few weeks prior. Talk about a blow to the gut. As I wiped my nose on Brian's suit coat, trying to hide behind him as if the horror of this news and Bridget's story would lessen, Maggie gathered herself and spoke with grace, humor, and purpose. I guess it's good to have friends much stronger than you are. Except, of course, that you're left to wonder why they hang out with you.

Because right now, I can do nothing more than try to process what absolutely crushed me last night; an emotion that I may not even be able to describe. It was like a bonfire of anger, fear, hope, gratefulness. Reluctant acceptance, and helpless denial. That fire was sparked by feelings of cruel injustice and feelings of sheer amazement at the resiliency all around. It burned at the sight of Bridget's little girl clinging to her father; at the thought of Steve tucking his girls into bed that night. At all of this happening without the woman whose smile lit up every photograph.

Bridget died just three months after she was diagnosed. She never even got to hold Chloe and she saw her youngest child only twice. As I fell asleep last night, listening for planes approaching Logan Airport, I kept coming back to how lucky I am. Because if I had found my cancer when I was 35, I know it would have been far too late.

As I watched Bridget's husband up on the stage last night, as strong as I know Brian would be, I realized that as much as I cherish my time on this Earth, and Lord, trust me, I do, it's not the thought of losing that time that devastates me. What devastates me is what that loss would mean to my family. I guess last night it all hit me that while Bridget was the victim of a horrible disease, it's those that love her -- those that survive -- that are the victims, too.

Doesn't this picture tell a thousand words? What strength and conviction.
Katie, Maggie, me, and Sara. These are some strong and fabulous ladies!

Friday, April 26, 2013

Good Tunes: Terry's Song

While sitting at my desk just now, this hidden track from the Boss's Magic album came on through my little office speaker. I had completely forgotten about this song and was immediately thrust back over five years ago, sitting with my new baby boy.

I used to sing this song to the newborn little Teddy when I was feeding him and rocking him to sleep. I know that part of it is based around loss and death, but I didn't dwell on that part. I just loved telling this new little thing how special he was.

I'll post Annabel's song soon. That's a John Denver one and I love that one too.

"Terry's Song"

By: Bruce Springsteen

Well they built the Titanic to be one of a kind, 
but many ships have ruled the seas
They built the Eiffel Tower to stand alone, 
but they could build another if they please
Taj Mahal, the pyramids of Egypt, are unique I suppose
But when they built you, brother, they broke the mold

Now the world is filled with many wonders under the passing sun
And sometimes something comes along 
and you know it's for sure the only one
The Mona Lisa, the David, the Sistine Chapel, Jesus, Mary, and Joe
And when they built you, brother, they broke the mold

When they built you, brother, they turned dust into gold
When they built you, brother, they broke the mold

They say you can't take it with you, but I think that they're wrong
'Cause all I know is I woke up this morning, and something big was gone
Gone into that dark ether where you're still young and hard and cold
Just like when they built you, brother, they broke the mold

[harmonica bridge]

Now your death is upon us and we'll return your ashes to the earth
And I know you'll take comfort in knowing 

you've been roundly blessed and cursed
But love is a power greater than death, 

just like the songs and stories told
And when she built you, brother, she broke the mold

That attitude's a power stronger than death, 

alive and burning her stone cold
When they built you, brother

[harmonica bridge]

Thursday, April 25, 2013

Curative Intent

This morning, like every workday morning, I exited the commuter rail at Back Bay station to switch over to the Orange Line. The Orange Line is always busy and today was no exception. When the train pulled up to the platform, it was full. A small group of people exited each car, moving through a tunnel of people waiting to take their spot. I'm always at the very back of that tunnel, usually thinking about something ridiculous, like how awesome it would be if everyone high-fived each other as they switched places -- kind of like the starting five players on a basketball team high-five their teammates when they are announced before a game.

This morning, after the people-tunnel dissolved, I tried to squeeze myself onto the train. Aaaand, I failed, surprised by the doors that literally snapped closed in my face. Excellent. At least they didn’t hit my boobs, I thought to myself, still curious as to the strength of my implants. (On my first day back to work after my second surgery, I had an unfortunate incident with the small sliding doors at the T ticket entrance. It hurt, and it taught me to always put my arm up to lead the way through the jumpy sliders.)

When I realized that I had failed to board, I looked around and laughed. Of the over 100 or so people who had tried to board that subway train, I was the only one who hadn’t successfully pushed my way on. Part of me was mad, another part embarrassed, and another part, totally amused.

Not more than a second later, a friend of mine that I haven't seen in far too long walked over to me. I’ll call this friend “Angela.” Angela had just gotten off the train on the other side of the tracks. We hugged, and we laughed about the fact that I was the only one left on the platform as the train pulled away. 

Angela is a breast cancer survivor, seven years out. Angela and I got to talking, actually, about “Betsy” whom we both know. The sick feeling returned and even though I admitted that feeling to Angela, it didn't go away. Then Angela told me this story.

Recently, Angela had gone to her doctor for her annual mammogram. She was telling the rad tech about Betsy and about how hard it has been for her to see Betsy battle her breast cancer recurrence. The rad tech replied, “Well, you know that you’re never really cured. It’s just in remission.” My bowl of Cheerios almost came up as fast as it had gone down. 

In the end, it was wonderful to see Angela today. But I'm sure we both left each other in a similar state -- grateful for how lucky we've been and for the people that have helped us through it; fearful that that stupid mammogram lady could be right.

Now let me be clear, there are unbelievable nurses, doctors, PAs, and rad techs out there and I have written about several of them. But this particular post is not about these great people. This post is about the toxic ones; the ones like that awful rad tech. 

When I arrived at my office this morning, I wanted to break down in tears at the thought that I may be fooled by the thought of a cure. I was even willing to break my rule about not crying in front of people at work (alone in the bathroom is fine). 

In the end, I didn't cry in front of anyone or even in the bathroom alone, not because I was strong, but because I had work that I needed to do. After promising myself that I could break down after my work was done, I sat down at my desk and did my job. Now I realize that this morning, that job rescued me. 

A fellow blogger recently wrote a post about his experience with a toxic nurse. I loved this post. I'm sure that every person who has spent a lot of time getting medical treatment could share a similar story about a crappy clinician. I'm sure that each story would break my heart, too, because many patients (like me) are incredibly vulnerable. And to vulnerable people, any medical person as thoughtless as these ones are absolutely poisonous.

Now that I sit in the comfort of my own healing chair and type out these thoughts, I feel differently than I felt this morning. Tonight I don't feel sick at all. Instead, I just feel mad.

I wish I could meet that rad tech. I wish I could tell her what her fly comment meant to Angela and to me. I wish I could explain to her how crushing it feels for cancer patients to hear anything but that everything is going to be OK.

Then I wish I could tell her that she’s absolutely freaking wrong. Because she is. I’ve seen it with my own eyes and heard it with my own ears. The piece of paper that the chemo nurse uses to check my name, my birthday, and my infusion dosages -- it says “curative intent,” and I know that thousands of other patients' papers say that, too. 

I'd also tell that woman what Dr. Bunnell says at the end of every appointment -- I think you're going to be fine, he tells me (OK, I have to ask him to say it, but still, he does). I'd tell her what I know about cures -- what Dr. Bunnell told me the night back in August when he told me that my cancer was HER2+: HER2+ cancer may be the first type of cancer that we cure. C-U-R-E. Cure. I want to repeat that word over and over and tell her what Dr. Bunnell has said many times (unsolicited, in fact) -- "We're going for the cure."

Of course, I am fully aware that one’s intent does not always indicate the outcome. No cancer patient needs to be reminded of what that word could mean. But shame on that lady for questioning the possibility of a cure. Shame on her for taking someone’s hope and dashing it; taking a woman's future and doubting it. 

I admit, in most ways, it's not my natural instinct to push onto a train or to fight against a comment that feels so devastating to me. I'm certain that today wasn't the last time that I'll be left alone on the Orange Line platform or hear an opinion about cancer and want to bawl my eyes out. But I also know that like all patients with serious illnesses, I need to focus on the positive; surround myself with people and messages that give me hope and strength. Like my Dad told me early on, I need to get mad, and fight. Because there is a cure and I join thousands of women who are going for it. Oh, and to that rad tech out there, I want you to know that even if there weren't a cure, or even if my cancer (Heaven forbid) does come back, I'd still try to tell myself every morning -- I'm going for it. No matter what you say.

*  *  *

P.S. A wonderful woman from Canton shared this image with me and I had to pass it along. Thanks Susan! 

Wednesday, April 24, 2013

Writing Saves Lives -- The First Board Meeting

​"To be a person is to have a story to tell." 
-- Isak Dinesen

Last night, the newly organized board of directors of Writing Saves Lives, Inc. gathered for its first meeting. To say that I had been looking forward to this night would be an understatement. I had been thinking about it for weeks and finally the day arrived when the idea that had come to me a few months ago would finally be set into motion. I’m not ashamed of my nerdiness so I’ll admit it – I was giddy.

I really wanted the meeting to go well so I planned things out carefully in my head. I wanted the wonderful people I had asked to join the board to feel comfortable with each other and be excited about what we had all come together to do. I had very high expectations for this meeting. Very high. And amazingly, somehow, what happened in those two hours was even better than I had expected.

Last night, in a conference room in Boston, six people sat together around a table and talked about writing and about all the good that it can do. We talked about how so many of us have gotten away from long-form writing. We write Facebook posts, Tweets, texts, and emails. We write for work, not for pleasure. We don’t even write full words anymore but rather we have developed a whole language of short-form abbreviations. We write, but not really.

(BTW...quick short-form story...A few years ago, a Ropes & Gray associate (who I didn't know) mistakenly hit “Reply All” to an email from one of his friends. The friend had written a mass email informing everyone that he was leaving the firm. In reference to the fact that the associate was staying at the firm, the associate wrote, “FML.” I won’t lie – mistaken Reply All emails kind of fascinate me and once I figured out what "FML" meant, I laughed. Hard. Then I felt bad. Poor guy.)

Anyways, last night's meeting was awesome. These board members are awesome; just the kind of people you'd want to work with, never mind, hang out with. And our mission is something I believe in with all my heart. To encourage writing and promote literacy. That's what Writing Saves Lives is going to do. How will it do that? We're not quite sure just yet. But we have lots of ideas and lots of energy and we can't wait to spread our love of writing to others who may benefit from it. 

At 9pm, after the meeting, I ran back to my office and passed Mark who was back at his desk. Mark kindly agreed to be a mentor to the board and I couldn't imagine a better person to play that role. As I rushed by and thanked him, he smiled and shook his head as if he were impressed by the meeting we had just wrapped up. You guys are building something, he said. And it's going to be great. Really great. I definitely think so. But boy, did it feel good to hear that someone else thinks so, too. 

*  *  *

Writing Saves Lives, Inc. is a Massachusetts nonprofit corporation that I conceived of once I realized what writing had done for me on my cancer journey. The organization's website can be found HERE.

As one of Writing Saves Lives' first efforts, I will be leading a writing workshop that begins one week from tonight. We have a few more open spots so for anyone in the Boston area who may be interested in attending, please click HERE. The workshop will be held at the Canton Public Library.

This was Annabel taking notes on the copy of my speech from last week's Relay for Life. My favorite part of the photo is that, like always, she has her sneakers on the wrong feet.

Monday, April 22, 2013

A Shadow Fell

I've accumulated several unfinished blogs this past week; scattered thoughts I typed out in hopes that the world would make a bit more sense once those thoughts formed sentences and those sentences formed paragraphs. But the sentences were crap, the paragraphs fit together as well as Teddy's little Legos fit together with Annabel's big ones, and as the week went on, the world seemed to get more and more confusing. Finally, today, I found something to hold onto.

As my Mom and I sat in the waiting room at my last treatment, I stared at the TV perched above us. Despite Dana-Farber's relatively short waiting times, I've stared at those TVs for a combined time of over several hours and in those hours, I've learned that Dana-Farber offers lots of different classes, workshops, support groups, and conferences to patients and their families. The programs look interesting but I was never interested in attending any of them. People in cancer cocoons don't do that. But a few weeks ago, a little light from the TV shown into my cocoon. There was a writing workshop entitled, "From Blog to Memoir," and it was being held on a Monday. I could do this, I thought to myself.

So today, after the craziness of getting the kids back to school, and after a little James snuggle and a work call, I drove into Dana-Farber. When I got there, it felt strange and victorious to bypass the line where I usually receive my patient bracelet and my little yellow GPS badge.

I grabbed some lunch before the workshop and as I sat in the cafeteria inhaling my food, I noticed a familiar face. I had met this man who I will call "Jack" at the Relay for Life up in Maine just a few days ago. We had spoken for only five or ten minutes that night, but I never forget a face. Jack looked a bit startled when I said hello and reminded him of how we met. Then he felt badly that he hadn't placed me as quickly as I had placed him. Jack, his wife, and I chatted for a while about the news that Jack had just received -- that he will soon need a stem cell transplant. Sheesh. Not exactly easy news to digest along with lunch and since I wasn't even hungry after we talked, I'm sure Jack wasn't either. I had to refocus a bit after the stem cell transplant talk -- remind myself of Jack's circle -- and I did so while waiting for the elevator down to the workshop.

The leader of the program was an English professor from Boston College (I'll call her "Professor Bee"). Professor Bee was amazing -- one of those people who was born to teach; born to make her students more thoughtful, more observant, lighter, better.   

Professor Bee's agenda was simple. We started with introductions. I was already fascinated after we made our first trip around the table. What an eclectic group we were. I never thought that having cancer could be so secondary to a trip to Dana-Farber but sitting in the Yawkey building today, it hit me that even though we all had a history of cancer, we weren't just people with cancer. Rather, we were people with a pen or a laptop and a story to tell.   

With introductions complete, Professor Bee handed out a poem and a writing prompt. Thoughtfully, she had considered the tragic events of last week and the poem she chose gave me the chills: 

Any Case

By: Wislawa Szymborska
Translated from the Polish by Grazyna Drabik and Sharon Olds

It could have happened.
It had to happen.
It happened earlier. Later.
Closer. Farther away.
It happened, but not to you.

You survived because you were first.
You survived because you were last.
Because alone. Because the others.
Because on the left. Because on the right.
Because it was raining. Because it was sunny.
Because a shadow fell.

Luckily there was a forest.
Luckily there were no trees.
Luckily a rail, a hook, a beam, a brake,
A frame, a turn, an inch, a second.
Luckily a straw was floating on the water.

Thanks to, thus, in spite of, and yet.
What would have happened if a hand, a leg,
One step, a hair away?

So you are here? Straight from that moment still suspended?
The net's mesh was tight, but you? through the mesh?
I can't stop wondering at it, can't be silent enough.
How quickly your heart is beating in me.

In her writing prompt that followed, Professor Bee asked us to consider the "it could haves" that have loomed large for us. I dove into that topic like it was a pool on a hot summer day -- I couldn't wait to be immersed in all of the relief that it had to offer. 

After the workshop ended, I waited in the valet area with over a dozen people who all looked so much sicker than me. As I crossed over Longwood Ave., I noticed all of the news trucks in front of Beth Israel Deaconess Medical Center, where the surviving marathon bomber remains in serious condition. It was surreal to me that he was just across the street from our little writing group; from the stories we shared of the pain he caused.

At 2:50pm, I was stopped at the last traffic light before I reached our house. It was exactly one week after the marathon bombings so the radio went silent for one minute to remember the victims. That was a very powerful minute for me, and likely, for many others. 

In that minute, I thought more about the Szymborska poem. I considered how close we all come to tragedy even if we're lucky enough to elude it. I realized that sometimes, for better or for worse, we recognize how close we came. Other times we have no idea that we just brushed shoulders with the devil.

The poem that Professor Bee introduced to us today reminded me of the Serenity Prayer that I've heard several times before, mostly at funerals of family members. I've often thought about this prayer in terms of lots of things that scare me.

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.

Terrorism, like cancer, is a wild beast. I wish I knew what I could do to be sure that me and my loved ones, and any innocent person for that matter, are first or last, or right or left, or wherever we have to be in order to be safe. But wild beasts don't let you plan that way.

And so I don't know what I think of the Serenity Prayer. Part of me likes it. Another part of me wonders if I will ever really find the wisdom to know the difference between what I can change and what I cannot. Because lately, life, and perhaps more so, death, seems to be a lot more about whether a shadow fell, paired with the really confusing question of whether I have any power to change that. 

Saturday, April 20, 2013

Kid Quotes: The Blog

I haven't written a Kid Quotes post in a while but I am still laughing about a conversation from last week so I wanted to get it down on paper (so to speak).

Last Saturday, Teddy had his best bud, Liam, over for some knee hockey, baseball, Wii -- the usual. During Annabel's nap, I decided to take the two amigos to get some ice cream at Crescent Ridge (aka, Question Ridge), mainly because they really are so much fun to hang out with and also because I was totally craving some ice cream. 

When I was buckling the two boys into the back seat, here's how the conversation went (almost word for word).

Me: Liam, I can't believe you are already starting to read! That's amazing. You are such a smart guy. 

Liam: Fanks. 

Teddy: Wiam, do you read my mom's bwog? 

Liam: No. 

Teddy: Does your mom read my mom's bwog? 

Liam: I don't know. But she runs and walks a lot.  

Yes, it did.

Yesterday morning, Brian and I did one of the most challenging things that we choose to do as parents -- we packed up the kids and headed out of town on a family vacation. OK, "vacation" may be a bit of a stretch, but we haven't been away in a while, so two nights in a bed and breakfast near Bowdoin felt worthy of the title, despite that the kids were already whining to get out of the car just a few exits up Route 128.

Apparently I have learned nothing from my five short years of parenting because yesterday morning, I asked Teddy and Annabel to help us pack up their stuff. Dumb, dumb, dumb. It didn't take long for Teddy to pack about 35 of his 50 stuffed animals and all of the pajamas and Red Sox gear he owns. Once I was done re-packing the little lad, I went downstairs and found a pile of toys by the door that he insisted we bring. I had no idea that a Rob Gronkowski mask and the game of Twister (which he has never played) were necessary for a family vacation, but apparently they are. Nevertheless, I thought it was sweet that he had also included Annabel's doll carriage and her "bee-bee's dia-pa bag." 

Annabel, meanwhile, was busy "helping" by putting on as many pairs of Teddy's underwear as physically possible (which, by the way, is seven pairs).

I felt like I could have used the FBI's help in negotiating with my children about what they could and could not bring on our short trip, but eventually, we all made it into the car and we were off. 

Teddy and Annabel both love music and before we even pulled out of our street, they had both lodged their first song request -- Bruce Springsteen's Death to My Hometown. Totally random, I know, but recently, this has been their favorite tune. 

Since Brian introduced the song to them over a year ago, he's sung the lyrics with a slight revision -- "Death to my hometown" always became "Gift to my hometown." Even when the song comes on while I'm alone, I still find myself singing the revised version.  

As we exited Canton for our trip yesterday, Teddy informed me that in fact, I was singing the words incorrectly. "Mom, did you know that the words are really death to my hometown?" Wow. Yes, I did know that. And yesterday morning, as Boston took shelter from the wrath of the marathon bombing suspect, I couldn't believe how timely Teddy's clarification happened to be. 

*  *  *

The real reason we were headed up to Bowdoin was so that we could attend the college's Relay for Life event sponsored by the American Cancer Society. A few months ago, two incredible Bowdoin students who were busy organizing the fundraiser found my blog. When they asked me to speak to the participants to launch the event, I accepted with great honor. 

My parents joined us on our trip and we enjoyed a wonderful day with them yesterday despite that our hearts were heavy for Boston and we constantly checked the news for any updates on the city we love. All day, we realized how lucky we were to be able to escape to Maine while others had to hunker down in fear or put their lives on the line to protect and defend. 

After I gave my speech, the cancer survivors all gathered on the track for the first lap of the Relay -- the "survivor lap." Teddy wanted to join me and of course I welcomed him to, despite that I was ambivalent about having him associated with this particular group. 

Before we started our survivor lap, we each got a medal. To a five-year-old, a medal is a medal, and so with the same ambivalence, I let him wear mine. I told him it was because he helped me so much while I got my cancer medicine. I don't know why I felt like I needed to clarify (to cancer) that my son was not one of its targets, but I did.

Coming up to Bowdoin to speak about cancer was a strange and wonderful thing. The place was so wonderfully familiar, the topic so terribly familiar, and the combination of the two so odd and foreign. I met incredible people, and I'll write about them one day. Tonight, however, I'll keep it simple, because as Teddy keeps reminding us (as he asks us for soda and treats and to play catch again), we are on vacation.

At one moment during the survivor lap last night, I remember thinking to myself, Am I seriously a cancer survivor? Sometimes I really do pause for a moment and consider, Did that really just happen? Then I need to remind myself that, yes, it did.

Last night after the kids to sleep, my family and I watched the news in the living room of the B&B (or rather, the "home-tel" as Annabel calls it). As I watched the footage, I had the same thought again -- Did that really just happen? Yes, it did, and for the victims, their loved ones, and the thousands of people who were far too close to this mess, I am so very sorry. 

Thursday, April 18, 2013

Good Words: Boston

We may be momentarily knocked off our feet but we'll pick ourselves up. We'll keep going. We will finish the race....This doesn’t stop us. And that’s what you’ve taught us, Boston. That’s what you’ve reminded us — to push on, to persevere, to not grow weary, to not get faint even when it hurts. Even when our heart aches, we summon the strength that maybe we didn't even know we had and we carry on; we finish the race. We finish the race because of who we are and we do that because we know that somewhere around the bend, a stranger has a cup of water. Around the bend, somebody’s there to boost our spirits. On that toughest mile, just when we think we’ve hit a wall, someone will be there to cheer us on and pick us up if we fall."  

-- President Barack Obama, April 18, 2013, Boston, Massachusetts

Wednesday, April 17, 2013


On Marathon Monday, I had an 11:30 appointment with a dermatologist. A few weeks ago, I had noticed a tiny mark on my arm that was an odd blackish-blue color. Given my all-to-close relationship with cancer, and the fact that I often seem to fall into very small percentages, I figured I should get it checked out.

Just as I felt going into my mammogram (in the very same building), I went into this appointment confident that nothing was wrong. I was just being extra careful and the doctor would take a quick peek at my arm before he would tell me that it was nothing. But that’s not what he said. Instead, he wanted to biopsy this tiny mark. I joked with him that the whole biopsy thing made me kind of nervous. “My last biopsy in this place didn’t go so well,” I told him.

“Oh, why? What happened?” he responded.

“Ah, I had cancer,” I laughed back. He didn’t think it was funny, and he was probably right.

So the doctor numbed up the spot and dug a little hole into my arm. He kept asking me if I was OK as he poked me. Trust me, I told him, This is nothing. Then I worried that I had insulted him.

When he was done, he told me that he would call me in two to five days with the results. I asked the doctor what we would do if this turned out to be cancer. He said it would be treatable. I had heard that line before, down one floor, in the radiology department. But I wasn't even worried about skin cancer. I was worried about something worse.

When I got home around 12:30 and told Brian about the biopsy, I think he shrunk a few inches right in front of my eyes. I’m sure it’s fine, I told him. He said it was unlikely that it was cancer. But inside, I was terrified and I could tell that Brian was, too. I wondered if this was it – this was the first small sign that the Herceptin hadn’t been able to block the HER2 protein from killing me. Then came the bombings. I never wanted all of Boston to join me in my uncertainty and my fear of death, but all of the sudden, it felt like they had.

This morning, the dermatologist called to tell me that I do not have skin cancer. It was a benign mole known as a “blue mole” or something weird like that, and it’s all gone now. I felt like the weight of the world had been lifted off my shoulders, at least, on the cancer front. I think my Mom and Brian felt the same way, too (I hadn’t burdened anyone else with this adventure). My Mom cried when I interrupted her in a meeting to tell her the good news and when I got home from work tonight, Brian looked a few inches taller.

Tuesday, April 16, 2013

The Finish Line

I am honored to have my thoughts included on the Providence Journal blog today.

My heart aches for all of the innocent people wounded and killed in Boston yesterday, and for the devastated families by their side. My spirit is lifted by the efforts of dedicated medical staff, brave law enforcement personnel, and every single person who is working around the clock to find out who could do something so cruel and cowardly.

No matter what we hear in the next week or month or year, I will never understand.

*  *  *

Here are some of my favorite photos I ever took of Boston, last July just before Rachel's wedding.

And this one was from a few weeks after that...the opposite view!

Monday, April 15, 2013

Baseball in Boston

Just after the Red Sox game ended this afternoon, I wrote the following blog. As I was re-reading it in preparation to hit "Publish," I saw the horrible news of the tragedy at the Boston Marathon. This light-hearted blog about my son's love of baseball felt totally misplaced so I saved it with a whole bunch of other unpublished posts. I figured that I'd never publish it. 

Since then, like so many others all over the world, I checked on my loved ones in Boston and I heard the amazing stories of strength and courage displayed by those at the scene of the blasts. People's cruelty never ceases to amaze me, but people's goodness always seems to amaze me more.  

Since the end of the Red Sox game, I also spent precious time with my family, I ran, and I wrote another piece about my feelings on today's tragedy. Like usual, writing was my therapy tonight and I don't know what I'd do without it.  

I'll probably publish that post at some point. But tonight, for some reason, I want to post the baseball one. 

I've sat here for a while trying to figure out why that is, wondering if somehow I'm being disrespectful of the victims by publishing this post and not the other one. In the end, I think this post may actually be the more appropriate one because it represents a significant part of today -- the pure innocence of people, especially young people, who truly love Boston and all that it stands for. 

*  *  *

A few weeks ago, Teddy got his uniform for his town t-ball team -- a pair of grey baseball pants, red socks that are so big they pretty much reach his little butt, and a red Angels shirt with "Read Custom Soils" and #9 on the back. He's taken the #9 shirt off a few times since then -- to take a bath. Yep, it's baseball season and Teddy is obsessed.

He starts his mornings by coming downstairs, turning on the Apple TV and clicking over to the MLB Highlights button. He proceeds to watch the highlight reels of each of the prior day's games, mostly concerned with the outcome of the Red Sox and the Angels games. Since the Angels apparently stink lately, he chooses to repeat the highlights of the few games that they've won. I think he knows the clips by heart.

When the highlights are over, he usually finds his glove and starts tossing a tennis ball into it. Last week, he wanted a little more excitement, and while I was running out the door to catch my train, he asked me what he could throw the ball against. There weren't many options so I told him he could throw the ball off the door to the garage after I left. As I got into my car, I smiled at the sound of the tennis ball bouncing against the door. 

Yesterday, Teddy and Brian went to the Red Sox game. Teddy had been so looking forward to the game (and the train ride) and he had been studying the Red Sox line-up in preparation. Brian said he was great, until the 6th inning (in the middle of a potential no-hitter) when Teddy decided that he "wanted to do something fun." Seriously? It turns out what he meant was that he had had enough of watching baseball. Now he wanted to play. I totally get that. On the train ride home, Clay Bucholtz gave up a hit and when I texted that to Brian, he felt much better about having to leave early. 

When they got home, Teddy and Brian played over an hour of baseball outside. This morning, Teddy got his Papa to play another few hours with him. From inside, I repeatedly heard the sound of the ball hitting the side of the house or the roof. I'll give it to him -- he can hit the ball even as Paul has started to turn up the heat on his pitches. It also totally cracks me up that Teddy likes to chew his gum while he plays, and that he has a little batter's box routine that he's developing. It's the small things, I guess.  

Today, when Teddy finally came inside, the Red Sox game was on so we sat down on the sofa to watch together. Despite that I had had the game on in the background for a while, flipping between it and the Boston Marathon, I hadn't noticed until Teddy pointed it out that all of the players were wearing number 42. He asked me why that was and so we ended up talking about Jackie Robinson for a bit. I told him about how brave Jackie Robinson was to play even when people were mean to him. Teddy got really concerned about that and I worried that I had told him too much. So we just talked about how great it was that everyone was wearing #42 to honor this great person. 

We sat in silence for a few minutes and then Teddy said, "He's like Scott Herr." My heart melted and I told Teddy he was exactly right. At the time, I was so taken aback, and so curious as to exactly why Teddy had drawn the connection, that I didn't think of anything else to say to him. If I could go back, I'd tell him that Scott Herr and Jackie Robinson were very similar in some ways; for instance, they both loved baseball and they both were such good people that they will always be remembered. 

The Red Sox pulled off a great win in the bottom of the 9th and we cheered and high-fived while Teddy reminded me that Mike Napoli had a big hit the day before, too. Sounded good to me. And I'm glad I now know who Mike Napoli is.

If only his world could always remain this simple...
*  *  *

I love you, Boston, and I pray for everyone affected by today's despicable acts. 

Thursday, April 11, 2013


A few days ago, two different friends of mine sent me an LA Times article that's been making the rounds -- “How not to say the wrong thing.” This article made me chuckle in agreement and it made me cringe in horror at dumb things I’m sure I’ve said in the past. I figured I’d write about this piece at some point, and although I didn’t expect it to be today, today was precisely when this article really hit home for me.

This morning I heard some crushing news -- that a woman I know (let’s call her “Betsy”) was recently diagnosed with a breast cancer recurrence. I don’t know Betsy or her story well, but when I heard the news, my heart sunk into my stomach and I felt the room around me darken and spin. I mentally retreated into my own self-centered little space, desperate to resurrect my cancer cocoon, crawl into it, and curl up in the corner. Unfortunately, it was too late for that. So I just tried to breathe, to keep my stomach steady, and to coax my mind back to a stable place. I succeeded into the first two efforts – the breathing and the not puking – but I think I failed on the last part because an hour or so later, I was still completely rattled.

Earlier this week, I wrote about how I’ve compared myself to other cancer patients. I’m not proud of it, but I’m not ashamed of it either. As Kristin explained to me, it’s a natural thing to do.

Similarly, maybe it was only natural for me to feel like my legs couldn't hold me up after I heard Betsy’s news today. I can’t deny my instinctual, self-centered response, despite that I am pretty ashamed of the self-centered part of it.

So here’s why friends are so important -- because they forward articles like the one that Lauren and Michelle forwarded me earlier this week. This morning, as I tried to find where the ground had fallen to, I got back to thinking about that LA Times piece.

When I first read the article, I hadn’t interpreted the ring assignment literally; I didn’t think that someone would ever actually draw the rings and write people's names in them. Even today I didn’t draw anything on paper, but I thought through a simple drawing, gradually envisioning it on an imaginary piece of paper. Betsy was written in the middle.

Where was I on this sheet of paper, you may ask. I wasn’t even on the page…I was somewhere on the ceiling above the page, or somewhere else distant like that. In other words, neither Betsy nor her friends and family need me to comfort in because in her current battle, I feel confident that Betsy has lots of rings of wonderful people around her.

What my pretend piece of paper helped me to see was that I had confused things. I don't necessarily think that I said anything wrong (even though I could barely form clear sentences about it), but I was definitely thinking all sorts of mixed up things.

For instance, I had put myself in the inner circle with Betsy. Even worse, I may have tried to bump Betsy out of her own circle. Yes, I admit that when my face went pale at the news today, a whole bunch of that emotion was not about Betsy. It was about me. About my family. My kids. My future or the lack thereof.

And that’s why this article is so brilliant. It centered me by reminding me that despite my own cancer, I’m not the center of every cancer battle. 

Sure, sometimes all of our rings will clash and bump and overlap with other people’s rings, especially when those rings formed from the same, or a similar reason. But still, everyone deserves to be at the center of his or her own ring and even in my silence, it was dangerous and wrong to try to squeeze myself into Betsy's space.

A fellow blogger who I’ve referenced before wrote something months ago that I’ve never forgotten. About other cancer patients, Michael wrote that sometimes he wanted "to assert that their cancer is not my cancer.” These words have helped me a great deal, especially today. Because today as I tried to calm myself down, I told myself that Betsy's cancer was not my cancer. At first, I meant that in a superficial way -- that just because her cancer recurred doesn't mean that mine will. 

But a while later, as I thought more about those words, I realized that I had come to understand them in a deeper, more significant way -- if we take on another person's cancer as our own, we make it impossible to form the outer rings of comfort and support for the person who needs that most. 

Wednesday, April 10, 2013

The Right Regret

Today's Herceptin flowed like water into my IV, and that never stops feeling miraculous to me. That infusion feels so remarkable not only because I can't believe that such a life-saving drug could feel so painless, but also because I still can't believe how quick the treatments seem compared to my desensitization chemo days. It's truly wonderful progress. 

After my treatment, I worked from home, spent some quality time with my eye doctor (blog forthcoming), and got a few precious minutes snuggling with baby James. When Brian got home from work, we had 45 minutes to spare before we had to go pick up the kids. I told him he was going for a run with me. And so we ran. One week out from surgery, that was pretty wonderful progress, too. 

As I dragged Brian around "the loop" (kidding, husband), I was thoroughly impressed by the human body's ability to physically heal. 

Even Brian was pretty amazed by it, but before I let him give my healing powers too many kudos, I clued him in on a harsh reality -- as fast as I am able to physically heal, on the emotional end, I'm slow as molasses. So I told Brian about my time with my therapy lady today. As usual, it was by far the most exhausting part of my treatment (and even more exhausting than that run!).  

I had my agenda for my 50 minutes with Dr. Fasciano all planned out. But somehow, Dr. Fasciano has a subtle and productive way of working through my planned agenda and getting to what really needs to be discussed. After about 30 minutes, we got there. It was definitely not where I had planned to be -- back at the topic of having babies, or better yet, not having babies. I cried. It hurt.

At the beginning, I was repetitive in what I said to Dr. Fasciano. Then I dove into some territory I hadn't covered with her (or anyone) yet. I told her a lot of detail about Brian and my appointment with the fertility doctor, way back in August. That meeting took place less than one week after I was diagnosed and I'm pretty sure it was the worst appointment with a doctor that I've ever had.

Here's why I love Dr. Fasciano. First, she listened to what I told her, like she always does. But more importantly, there was something different about the way she responded to this new information. In her own calm and collected way, she got pissed. 

Dr. Fasciano was upset that a doctor had behaved the way that this doctor had behaved to us. She told me that she thought I should write a letter to the doctor -- not a therapeutic kind of letter, but one that I would actually send. Huh. I never thought about that. Maybe I will write that letter one day. No doubt, I've got things to say. 

But I'm not there just yet, and Dr. Fasciano didn't make me feel like I should be. Instead, she said those words that have comforted me before -- that this is a loss and that it's OK for us to feel that way. 

She also asked me a really interesting question; something like, If you could go back, would you have made a different decision? To be honest, I don't really know how I answered that question this morning. My edit button was off and since the tissue box that's usually on the side table was nowhere to be found, I became focused on wiping the tears from my eyes before they fell all over the place. What I know for sure is that when I was done, I felt tired. And somehow, I felt better. 

Now that I have some time to think about it, I realize that for the first time in my life, if I could go back and make a different decision, I probably would. I would allow a fertility doctor (definitely not this terrible one) to pump me with hormones, harvest my eggs, and freeze them so that one day down the line, Brian and I could have more biological kids. But that's what they call "regret," right? Yuck. I never wanted any regret. 

The thing is, that if I could go back, I would only make a different decision if I knew what I know now; if I knew that in fact my cancer hadn't spread yet, that the Tamoxifen would be a 10-year course, not just five; if I knew that one day, I'd see beyond the terrible darkness that comes with a cancer diagnosis. But we didn't know all of that then. There's really no way that we could have. 

So we did what felt right at the time. We put my health first -- no additional hormones that could fuel my hormone-receptive cancer; nothing that could push a dangerous cell beyond where it had already gone. We played a very scary situation safe. I'll never regret that. And I'll be forever grateful that I found myself a guy that insisted on protecting me. 

Arthur Miller once said, “Maybe all one can do is hope to end up with the right regrets.” I love that. Because even though I may have regret, I've found some peace in believing that it's definitely the right kind. 

Monday, April 8, 2013

Stages of Comparison

Tonight, I'm turning back to my "10 Things I've Learned From Cancer" list that I first posted a few weeks ago. I've got some things to say about #3.

Number 3 on the list is not the original #3. Number 3 changed a few days ago when something hit me square in the fuzzy brain and I panicked that my list had neglected a lesson as important as this one. As soon as I could, I logged in to edit the post. I changed the old #3 (People with cancer don't always know a lot about their cancer.) to the new #3 (Be very careful when comparing cancer stories.). When I made this edit, I kind of felt like I was changing an answer on the SAT or the bar exam after the proctor had announced, Pencils down. My anxiety quickly subsided, however, when I realized that maaaybe two people would notice that I had made the change (and I'm likely one of them). Everyone else probably read the first sentence of this post and thought, That list again? I thought we were done with that. But like I tell a waitress when she tries to take my plate away too early, Nope, sorry, I'm still working on that. 

3. Be very careful when comparing cancer stories.

This past Saturday, Teddy and I drove into Dana-Farber. My therapy lady had invited me to provide a patient's perspective at a workshop that she was leading at a conference for young adults with cancer. Since my surgery was just days before, I told her I'd play it by ear, but when I woke up on Saturday able to see clearly, I was ready to get out of the house even if it meant driving into my favorite cancer center. 

I probably wouldn't have ended up going if Teddy hadn't wanted to come too, but he was excited to drive into Boston (I told him we'd take the windy road) and he was curious about the place I go every few weeks for my medicine. I thought it was the perfect chance to make this crazy part of my life seem normal to him. 

On the drive in, I had some precious time with my little guy. We talked a lot about baseball and we sang to some of his favorite tunes (he loves himself some Lady Gaga). In one of my favorite moments, Teddy asked me if Keegan's mom was going to be at the meeting. Keegan is the three-year-old son of my friend, Kristin, and I'm almost certain that even at three, this adorable little tyke is a key part of Teddy's comfort with my cancer. Obviously I don't know what's going through my son's head, but I think consciously or subconsciously, there could be something like this -- If my mom isn't the only mom who has breast cancer then breast cancer is OK. I could definitely be wrong about this, but I feel pretty confident that I'm not totally off-base. 

Teddy's question made me realize that when it comes to cancer, I may be a lot like my five-year-old son. Here's why. Interestingly, it has a lot to do with both #3s. 

This past Saturday, I wrote that I'm working to put cancer in my rearview mirror, and that as I drive away from it, in many ways, it's getting clearer. Maybe I have a sick need to revisit some dark times, maybe I think that if I make sense of those times then I can tuck them away for good, or maybe this story just popped in my head because it connects so perfectly to the #3s on my list. I don't know. Nonetheless, I feel compelled to write about a terrible night that I had back in September. 

I don't remember the exact date and I've never even drafted an unpublished blog about this night. I do remember, however, that it came in the throes of the chemotherapy-decision-making time -- that week or so after Dr. Bunnell had presented us with different options for treatment, but before we had made our final decision to go with Option #2. We were still celebrating the news that the cancer hadn't spread to my lymph nodes, but I was still haunted by Dr. Bunnell's drawing of the HER2 protein attacking a healthy cell. 

It was just before October (breast cancer awareness month) and Kristin posted something on Facebook about her breast cancer story. Selfishly, I remember very little of what she wrote in that post except for one thing, and I remember that thing as clear as the day -- Kristin wrote that she had Stage 1 breast cancer. 

Let me confess -- I have never told Kristin about this night and I am not proud of what I am about to write. But this is the truth and I've found that putting the truth out there, however ugly it is, somehow, helps. 

When I read that word (Stage) and that number (1), I burst out into quiet, uncontrollable tears. 

So here's where the old #3 comes in. After my surgery, I figured that Dr. Bunnell would tell me the stage of my cancer as if it were the most important number that had ever been revealed to me; that he may even hold up the number like Bruno Tonioli announces his Dancing with the Stars score (without the triumphant other fist, of course). But it turned out that Dr. Bunnell never told me the number and I sure as heck wasn't going to look at my pathology report. That would just be fuel for future nightmares and I didn't need any more of that. 

I did, however, remember Dr. Bunnell explaining that I had a "Grade 2 tumor" and me being medically trained as I am (I took a liberal-artsy bio class my freshman year at Bowdoin), I figured that meant I had Stage 2 breast cancer. 

Here's where the acting like a five-year-old, as well as my new #3, comes in. When I thought that Kristin had a lesser stage cancer than I did, I completely freaked. Like completely. Freaked. 

Of course, I didn't want her cancer to be Stage 2 also, but I had never thought through what it would feel like to have it worse than the person whose path I was following. Did this mean that our paths would diverge? Did this mean that she would be fine and I would not? That her kids would have a mother and mine would not? I couldn't control my tears. 

Somehow (mainly because I think she has a magical power), my Mom called as I sat at my computer bawling my eyes out. I remember relocating to my healing chair as I wailed to her in incomplete sentences that she somehow pieced together. Brian had also joined me, having come downstairs after my quiet cries had turned to hysterical ones. 

I wept to the two of them that maybe I should go with Option #3. I compared Kristin's treatment to my own options. If her's is Stage 1 and mine is Stage 2, I should at least get what she had! Maybe Dr. Bunnell didn't tell me the stage because he knew I would totally lose it. I don't even remember most of the other stuff I said that night as my boogers and tears fell all over the phone. I was so confused and so, so scared. 

As my wailing started to get repetitive, Brian got up. I heard him rummaging through papers and clicking away at the computer. About five minutes later, he appeared in front of me to explain his argument that my cancer was, in fact, Stage 1. I love my husband, not only because he has the courage to Google, but because he knows me enough to know exactly what to Google and when to Google it. 

Here's the funny thing -- I still am not certain of what stage my cancer is was (hence, the old #3). I feel pretty confident that Brian wasn't making up stuff that night way back when, mainly because he sounded really sure of what he said and I don't think he could have come up with all of that medical jargon in such a short time (and while he listened to me have a mental breakdown in the background). I guess I always figured that people with cancer know everything about their condition. But not fraidy-cats like me. We don't know squat. 

So, for my new #3 -- be careful when comparing cancer stories. On the one hand, survivor stories give me my most powerful doses of hope and inspiration. But there's another (very sharp) edge to that sword. 

Of course, I worry what Kristin will think when she reads this post. Being the most kind and selfless person that she is, I worry that she will think she did something that hurt me. Of course, that couldn't be further from the truth. 

The truth is, that at some point in telling my story, I have probably sent someone else into a tailspin like the one I experienced last September. It probably didn't have to do with the stage of my cancer, but there could have been so many other things. Please know that if I caused any pain, I did it with the amount of mal-intent that Kristin had in that Facebook post -- less than nil

So here's where I'll leave off on this ever-so-lengthy #3 on my list. Often, I don't mind comparing myself to others and I think that healthy competition is a really good thing. I don't believe in eliminating class rank in high schools and I like it when youth sports award first, second, and third places. But cancer is different. Cancer isn't about not getting a ribbon. It's about not getting a next birthday. And that's pretty freaking terrifying. No matter what the stage. 

Saturday, April 6, 2013

The Rearview Mirror

Bad eyesight -- really bad eyesight -- runs in my family. My Mom passed it down to me and to my sister, and some of the most embarrassing photos of us as kids are the ones with our terrible glasses. (Seriously, Mom, how did you let us out of the house like this?!?)

Me and Rachel, 1992.
Brian has always loved to make fun of how blind I am. His favorite trick in college was to steal my glasses and hide them while I wandered around feeling surfaces for where they could be. Often, he was wearing them. He got such a kick out of me looking straight at his blurry figure telling him what a jerk he was, all while my glasses sat just above his mean little grin.

* * * 

This morning when I woke up and put my glasses on, I could see. Halle-freaking-lujah because since my surgery, even with my glasses on or my contacts in, everything has been annoyingly blurry. Over the last few days, my ability to see long distances improved, but still, I couldn’t read anything up close unless I took my glasses off and moved the text an inch from my face.

At first, my blurry vision didn’t really bother me. I remembered that the same thing had happened after my first surgery and I had faith that it would improve in a few days. I wasn’t even aggravated when I wrote my last blog post on the night of my surgery. Hunched over in my healing chair, I typed with one hand while holding my small laptop up to my face with the other. I was sore, but satisfied that I found a way to work around it.

A day later, however, I had lost my patience. Not being able to write or read was definitely the worst part, but not being able to exercise or shower, pick up my kids, drive, or pretty much, do anything productive, turned me into a total grouch. 

The whole time I was in a bad mood, I knew how ridiculous I was being. I knew I should be thankful that I was already wanting to do all of these things, not inhibited by fear associated with cancer. I knew how lucky I was. But none of that seemed to help and eventually, I just let myself wallow in my own grouchiness. Since no one but me noticed, I figured it didn’t really matter.

Wednesday's reconstructive surgery was, in a physical sense, much easier than I thought it was going to be. I wasn't itchy or nauseous after the surgery and compared to the double mastectomy, the pain was amazingly bearable. In fact, I stopped taking the pain medication after just one day because I couldn’t stand how confused it made me. Now, just three days later, I don't even need Tylenol to keep the pain in check as long as I don’t rely on muscles that shouldn’t be relied on yet.

Emotionally, however, the last few days were harder than I had expected. I’ve tried to figure out why that is, and I’ve come up with this. 

I have been blessed with a very linear battle with cancer – diagnosis, surgery, recovery, treatment, recovery. I’ve taken huge steps forward with every move and those big steps forward fit my personality well. 

My reconstruction was certainly another huge step forward, but in the last few days, it didn’t always feel that way. Instead, these last few days felt like an unwanted flashback to a world that I had already moved far beyond. 

Obviously, I'll never forget the world of being a cancer patient, but as I've written about before, I've seen that the human mind has an incredible ability to adapt. In the past few months, I had adapted out of the world of intensive cancer treatment -- not so much forgotten about the crappy parts of it, but rather, replaced those concerns with much better ones (like, how are we going to get Annabel to wear her own clothes and not Teddy's?). 

After this surgery, however, I was reminded of some of those crappy parts. For example, I was reminded that medication makes my brain very fuzzy and that apparently, in that fuzzy state, I can carry on full conversations that I don't recall hours later. For a total control freak, that fuzziness means terrible uneasiness, too.

These last few days were, literally, very blurry, but they were a metaphoric blur, too. I had to really think about what day of the week it was and as I dozed in and out of short naps, I had to determine if my surgery had already happened or if I was still prepping for it. I had very bad and very vivid dreams, the worst one I've ever had, torturing me last night. With those dreams, with my surgeon's instructions to take it easy, and with my focus again on my own healing, I was thrust back into a world that I had been very happy to leave behind.

Way back on January 15th, an anonymous reader posted this comment on a blog post. I have thought about these words at least a thousand times since:

Your blog has been a new place with familiar feelings for me. I am an 8 year survivor of stage 3 (briefly bumped to stage 4... long story). We are informed by mortality rate pies that do not reflect the amazing progress we have made with this disease. When I was first diagnosed I asked a friend, a survivor, if there was ever a day, an hour, a moment, that she did not think about cancer. She was 10 years out and she said "months go by." I couldn't believe it. It took some time for that to be true. You will grow old. You don't have to be more grateful than anyone else for the privilege. Be proud of your brave fight and allow it to get smaller and smaller in the rear view mirror.

You are so alive, your writing reflects that. I think the instinct is to try to appreciate each moment (bald, with mouth sores and nosebleeds... and the constant threat of your own mortality...hah). Allow for the greater possibility of your own survival. Live as if.... isn't that how it was before? Being wrong then didn't change that. The quality of your life returns when you can embrace the probability, just as you did before diagnosis, that you will be a grey haired old granny.
I have every confidence that you will prosper.
I am now, very recently...a granny.

This comment gave me such hope, at a time that I really needed a fresh dose of hope. You will grow old, she wrote. I can't begin to explain what those words meant to me, from a Stage 4 breast cancer survivor nonetheless.

This comment also made me think, for the very first time, that one day my mind could be free of the running cancer commentary that so burdened it; that one day, for a whole day, I wouldn't even think about the stupid disease. Just like this woman had said, I didn't believe it would ever really happen, but I felt such hope at the thought that maybe, it could.

If someone had asked me before my last surgery if I had yet put cancer in my rearview mirror, I would have said no. I would have told that someone that cancer's big a$$ was still planted in my passenger seat (and worse, that it refused to put its seatbelt on so the put-your-seatbelt-on alarm was still relentlessly dinging).

But my last few grouchy, blurry days made one thing a bit more clear. I had, in fact, started to drive away from cancer. Sure, it had a quick chance to rear its ugly head again, but that chance is over. Now, if I look back, I can once again see cancer getting smaller and smaller in my rearview mirror (and, in many good ways, clearer and clearer). If I look to the side, or to my back seat, I can see my family and friends still with me on this crazy ride. If I look down, I can see my new silicone implants. And if I look forward, I can see myself. Not only do I have hair, but...even better...it's grey!

Dr. Chun's markings indicated her intent to move my boobs in and up in the upcoming surgery. I didn't really have an opinion on the matter, probably because my first Ativan in months had already taken me to a relaxed, happy place. Thanks, Dr. Chun! You're a total star. 

Wednesday, April 3, 2013

"The Power of Vulnerability"

Today's surgery went perfectly, both physically and emotionally. I drifted off to sleep before the nurses rolled me into the operating room and when I woke up in the recovery room over two hours later, I felt like a split second had passed. I can only hope that every woman who faces this type of reconstructive surgery has as smooth of a ride as I did today.

Moving on from the medical update, let's turn to something far more interesting...

Last night, I watched this VIDEO that an incredible woman (an old friend, who I'll call "Claire") sent to me. I don't know Claire very well, but after we spoke over the phone for a half-an-hour last week, I learned so much about her. I learned that Claire faced an ultimate tragedy and yet, she has so humbly had the courage and the strength to carry on with remarkable unselfishness, grace, and perspective. I know that's a long list of adjectives, but trust me, it still doesn't do Claire justice. 

(Please Note: If you'd prefer to read my favorite excerpts of the talk, please see below. The full transcript can be found beneath the video on the webpage linked again here.)

From speaking with Claire, I also learned that she and I cope with difficulty in very similar ways. So when Claire emailed me the link to the video, I watched it -- all 20 minutes of it -- and I didn't even multi-task in the meantime (a real rarity for me). As Claire had predicted, I found this video to be fascinating, smart, and so right on.

In a later post, I want to try to apply Dr. Brown's concepts to my own life -- before, during, and after cancer. For now, however, I need to grab a pain killer and go lie down. My new boobs may look nice under my sexy Velcro surgical bra, but my chest still feels raw and sore.

To Be Continued...

*  *  *

Excerpts from Brene Brown's TED Talk 

(Full transcript can be found at video link)

...And shame is really easily understood as the fear of disconnection: Is there something about me that, if other people know it or see it, that I won't be worthy of connection? ... What underpinned this shame, this "I'm not good enough," -- which we all know that feeling: "I'm not blank enough. I'm not thin enough, rich enough, beautiful enough, smart enough, promoted enough." The thing that underpinned this was excruciating vulnerability, this idea of, in order for connection to happen, we have to allow ourselves to be seen, really seen.  ...

I roughly took the people I interviewed and divided them into people who really have a sense of worthiness -- that's what this comes down to, a sense of worthiness -- they have a strong sense of love and belonging -- and folks who struggle for it, and folks who are always wondering if they're good enough. There was only one variable that separated the people who have a strong sense of love and belonging and the people who really struggle for it. And that was, the people who have a strong sense of love and belonging believe they're worthy of love and belonging. That's it. They believe they're worthy. [Emphasis added.] ...

Courage, the original definition of courage, when it first came into the English language -- it's from the Latin word cor, meaning heart -- and the original definition was to tell the story of who you are with your whole heart. And so these folks had, very simply, the courage to be imperfect. They had the compassion to be kind to themselves first and then to others, because, as it turns out, we can't practice compassion with other people if we can't treat ourselves kindly. And the last was they had connection, and -- this was the hard part -- as a result of authenticity, they were willing to let go of who they thought they should be in order to be who they were, which you have to absolutely do that for connection.

The other thing that they had in common was this: They fully embraced vulnerability. They believed that what made them vulnerable made them beautiful. They didn't talk about vulnerability being comfortable, nor did they really talk about it being excruciating -- as I had heard it earlier in the shame interviewing. They just talked about it being necessary. They talked about the willingness to say, "I love you" first, the willingness to do something where there are no guarantees, the willingness to breathe through waiting for the doctor to call after your mammogram. They're willing to invest in a relationship that may or may not work out. They thought this was fundamental.  ...

And I know that vulnerability is the core of shame and fear and our struggle for worthiness, but it appears that it's also the birthplace of joy, of creativity, of belonging, of love.  ...

And we perfect, most dangerously, our children. Let me tell you what we think about children. They're hardwired for struggle when they get here. And when you hold those perfect little babies in your hand, our job is not to say, "Look at her, she's perfect. My job is just to keep her perfect -- make sure she makes the tennis team by fifth grade and Yale by seventh grade." That's not our job. Our job is to look and say, "You know what? You're imperfect, and you're wired for struggle, but you are worthy of love and belonging." That's our job. 

But there's another way, and I'll leave you with this. This is what I have found: to let ourselves be seen, deeply seen, vulnerably seen; to love with our whole hearts, even though there's no guarantee -- and that's really hard, and I can tell you as a parent, that's excruciatingly difficult -- to practice gratitude and joy in those moments of terror, when we're wondering, "Can I love you this much? Can I believe in this this passionately? Can I be this fierce about this?" just to be able to stop and, instead of catastrophizing what might happen, to say, "I'm just so grateful, because to feel this vulnerable means I'm alive." And the last, which I think is probably the most important, is to believe that we're enough. Because when we work from a place, I believe, that says, "I'm enough," then we stop screaming and start listening, we're kinder and gentler to the people around us, and we're kinder and gentler to ourselves.

Monday, April 1, 2013

The New Normal

I love Brian’s extended family for many different reasons. I especially love their holiday gatherings in South Boston because those times highlight their loyalty to each other, their sense of humor, and their impressive ability to consume awesome amounts of appetizers (plates, napkins, and utensils not required, or even suggested). Yesterday, I was reminded of all of these things, and of another reason that I love Brian’s extended family. That reason involves soda.

Even before I was diagnosed, I had cut back on drinking soda despite that I really, really love it. I can imagine the taste of an ice-cold Coke now and in my mind, no other drink beats it. I admit, however, that after Brian de-rusted his putter by leaving it in a bowl of Coke, I was slightly horrified. So I made soda a treat, not an everyday thing.

After I was diagnosed, I stayed away from soda altogether because of the sugar content (apparently there's a lot) and because of my fear that the sugar would feed my tumor. Post-surgery, however, I went back to having a soda every now and then when I craved it. Yesterday was one of those times.

Now that I think about it, I wasn’t so much treating myself to a glass of soda at Brian’s family’s Easter gathering, as I was merely surrendering to the sugar gods. I had already consumed so much candy, donuts, muffins, and banana bread in the last few days that one glass of soda wasn’t going to make an ounce of difference in my cancer battle.

So I added some ice to a cup and poured myself some Diet Coke (Diet, obviously, because the half a block of cheddar cheese I was trying to wash down may as well be fractionally offset by diet soda).

I swallowed the soda and there it was -- a flat, stale taste with which I was so keenly familiar.

Brians' cousin, Taryn, was standing in front of me as I gulped. She blogs too, and today, without either of us knowing that the other was doing it, we both wrote about the experience. Since Taryn's description was so much better than mine, I deleted my summary and replaced it with this link to Taryn's blog:

Taryn's Life of a Paper Doll Blog.

As Taryn explained, this is the first Easter without Grandma Kosta. It was also the first Easter without Brian’s great-uncle, Pete. Pete died less than two weeks ago. Like Grandma Kosta, he was blessed with over 80 good years, but unlike Grandma, his death was very sudden, and thus, especially hard for his wife and daughter.

Grandma lived on the first floor of a triple decker. Brian’s parents live on the two floors above her. They have worked hard in the past weeks cleaning up Grandma’s space. I took a quick peek in there yesterday. It was strange and sad to see it so empty.

This Easter, we all gathered upstairs instead of at Grandma's place. Without Grandma and Pete, I was worried that our gathering would be strange and sad, like the empty apartment. But it wasn’t, which is the main reason why I love Brian’s family so much.

The Kosta/Tracey/Antoniou/Foley/Shuman clan is, in spite of anything, fun, funny, loud, sarcastic, and (even though it doesn't always sound like it from a distance) incredibly kind. Grandma was the head of that clan and Pete was a much quieter, though equally as important, leader. Even though their absence was undoubtedly felt, no one let it completely darken the day. Probably because that’s exactly how Grandma and Pete would have wanted it.

When Grandma died, I wondered what would happen on Easter. Given that Pete’s funeral was less than a week ago, I thought maybe people would want to skip the holiday. But that’s not what happened. Brian's family is much more resilient, and loving, than that. It's inspiring.

* * *

Tomorrow at 1pm I will step out of a business lunch at a nice Boston restaurant and call the Faulkner for my Wednesday surgery time. If I weren't going through this, I wouldn't understand why there needs to be another surgery and why it will happen now. So I'll talk about that for a minute.

This second surgery was always planned for after chemo (obviously I couldn't heal properly while on chemo). On Wednesday, Dr. Chun (my plastic surgeon) will reopen the long incision across each of my breasts. She will remove the temporary tissue expanders that she had gradually inflated with saline since she implanted them back in September. Then she will place silicone implants where the expanders used to be and sew me back up. It's probably more complicated than that, but I'm pretty sure I don't want to know any more detail.

I take that back. I did have one question for Dr. Chun at our last meeting -- Have you ever opened someone up for this surgery and found more cancer? 

"Never," she answered. And that was that.

Dr. Chun said my recovery time should be about a week. I have my next treatment in a week, so I hope to beat that estimation. In fact, I plan to be back at work on Monday.

A few weeks ago, my Mom and I spent a long morning at the hospital for several pre-op appointments. I answered the same questions I answered in the pre-op appointments before my double mastectomy -- my entire health history, in which I essentially answer "no" to every question until we hit cancer. I didn't have much to add since last time, except for my newly discovered allergy to Taxotere. Fortunately, (fingers crossed) my Taxotere days are behind me.

At my March pre-op appointments, I realized how far I've come since the meetings from last September. Back then, that day was a glimmer of light in a very dark time. But this time, I wasn't scared at all. I was mainly just focused on enjoying a precious few hours with my Mom before skirting around Boston traffic to get to work at a reasonable hour of the morning.

*  *  *

In writing this post, I realized that cancer has opened my eyes to the sheer resiliency of the human race. From the small things like the taste of expired soda (I'm sort of kidding) to the really big things like battling a life-threatening disease or losing a loved one (not kidding at all), people have an unbelievable ability to adapt and, somehow, to carry on. I'm not saying that the adjustment is easy or fast, or that life will ever be the way it was before. It isn't and it won't.

What I am saying though, is best explained by one of the bravest people I know. Sarah, who has battled brain cancer with more grace and goodness than I could ever dream possible, recently wrote to me about her "new normal." I love that phrase because I, too, feel like I've found a new normal. Most of the time, I'm really grateful for it.

Knowing my new normal, I'll probably roll up to Faulkner on Wednesday with my stomach growling and my fingers crossed that the anesthesia doesn't make me sick. I'll likely also be pissed that I have to lie around for a few days while I heal (unless I can find a way to hold James without terrible pain...then I may enjoy these couple of days). After all the prep and placement of IVs, etc., Dr. Chun will draw on my chest with a Sharpie while I make some dumb joke about the boob job I never expected. Finally, I'll hit Play on my Kick Cancer's Ass playlist. And I'll drift off to sleep.

Yeah, yeah, yeah. I know. But I'm glad I found a plastic surgeon who really wants to try.