Thursday, May 30, 2013

“Me and My Mommy Love Each Other”

On the way home from Teddy’s t-ball practice last Saturday morning, Annabel and I were singing along to the radio when Teddy, just done chomping on his nutritious breakfast of Starbursts from the vending machine, yelled a question up to me in the driver’s seat. Mommy, when is your hair going to be wegulah? 

I was stumped, and, I admit, a bit hurt inside. To buy myself some time, I asked him what he meant. When is your hair going to be wegulah? he repeated. OK, fine then. I knew I was cornered.

Do you mean, when is it going to be longer?


I don’t know buddy. It’s growing fast, don’t you think?


You don’t like my hair the way it is now?


How would you like it to look?

How it looked before.

You liked it that way?


Do you think it’s weird that there aren’t lots of other moms with my haircut?


Man, this was hard.

I tried to explain that I really don't mind that I don't look like other moms. I like my hair and I don’t mind if other people don’t like it. But I don't like to hear that you don't like it because you're my bud. 

But the boys in the car said mean things to you about your hair. Damn. Nothing gets by that kid. 

Certainly Teddy didn’t read my blog about being called a terrible name by a car full of boys as I ran down Washington Street back in March, but I know that he overheard me matter-of-factly telling Brian about it.  Now that I think about it, I can see why it stuck in Teddy’s mind – Brian was mad and upset and wanted to do something about it. I told him it was absolutely fine and I explained to Teddy that sometimes people say mean things but as long as we are happy with ourselves, it’s all good. Still, I couldn’t believe that he would be thinking about those stupid boys months after they startled me.

I repeated to Teddy that I wasn’t hurt by those boys yelling something mean to me; that even though they were mean to me, I wasn’t mean to them in return (as if I had the chance to be). He just repeated that he wanted my hair to be regular again.

The whole hair thing has been such an interesting part of this journey. It has meant so little to me, yet, I think, so much to other people. Then again, I know I was in a different position than those people because they could see my hair (or lack thereof) and, aside from the few minutes a day that I see myself in a mirror, I could not. On a deeper level, however, I was relatively unaffected by people's curious stares or repeated glances because all they were seeing on my head was the truth – I had cancer and my medicine killed my hair. If they happened to find that interesting, so be it. I really didn't care.

Now that my hair is back but still short, I’m enjoying the fact that it’s so easy to style in the mornings. I love that it doesn’t get in my way when I exercise and it’s never hanging in my face when I'm at work. It’s just there – plain and simple – and most days, I expect that I’ll keep it short. I think to myself, Why would I want to waste a precious minute on my hair every morning? I'd rather write or read a Clifford book to Annabel one more time. 

Then, some days, I think about how awesome it would feel to grow my hair out long. My hair has come back thick and curly and since I have had thin, straight hair for so many years, a new style sounds fun. But I always seem to end up back at the fact that there are so many things I’d rather spend my time on than my hair.

Enter Teddy and his thoughts on the matter. Do I owe it to him to be “regular”? Are his friends teasing him about his mother with a boyish haircut? Should I protect him from that? Or should this be the first in a long series of lessons about acceptance and diversity? I have no clue.

Last night I didn’t get home until a few hours after the kids went to bed. I stayed late at work for the second of our Writing Saves Lives board meetings and when the kids called my office after school, Teddy asked me why I would be home late. I told him that I had a meeting with a group of my friends and Uncle Sean to talk about writing. He said he wanted to write a story and Brian agreed to help him do so that night. Since Brian is Brian, he followed through on this plan and a few hours later, just before I went into the meeting, I received the following “story” over email. Brian swears that he didn’t give Teddy a prompt and that he didn’t edit a word (apparently Teddy even chose the title). Brian claims that he simply transcribed exactly what the little lad dictated to him.

Aside from the fact that Teddy has grouped several different events (for example, our April trip to Bowdoin and the Memorial Day cookout with our neighbors) into a short span of a few days, his story is otherwise, pretty right on. In fact, if I had to write about some of the happiest times I have had in the last month, my story would look a heck of a lot like his.

“Me and My Mommy Love Each Other”

Mommy and I were playing.

Mommy and I were playing together and then we came inside.  We wanted to do something else, so we went to the bead store.

At the bead store, we bought all different kinds of beads.  Gaga went with us.  We bought blue, pink, green, and orange beads.

We went home and went to a cookout at Max and Penny’s house. I played with Annabel, Max, Declan, Jonathan, and Matthew.

Mommy and I went golfing. When we finished golfing, we went over Gogo and Gaga’s house.  And then we came back home and played basketball.

My mommy is the best basketball player. 

Mommy and I had dinner. Then we had our cookout.  After the cookout (after some of the people left), my friends and I played.  Me, Maggie, Huck, Brendan and Dean played cooking.  And then I went to bed.

The next day, Mommy and I went on vacation to a cookout up in Bowdoin.  Mommy talked up in Bowdoin.  Before we went to our hotel, we went with Gogo and Gaga to lunch.  And then after we went to our lunch, we went to our hotel.  The rooms were very nice.  On Friday night we went to a cookout that Mommy talked in.  We then went back to our hotel and went to sleep.

The next day, me and my Daddy went to a Bowdoin College lacrosse game.  Then we picked up Mommy and went to get some lunch.  Then we went back to our hotel.  The next day we went home.

At home, I played with Huck and I just want to say hi to my friends again. And then we played a lot.

Me and Mommy relaxed after that busy, busy vacation.  And we watched Dinosaur Train because I (Teddy) love Dinosaur Train.  And I love Mommy.

The End

In the end, Teddy's story didn't help me with all of the confusing parenting questions that have popped up recently. But it did help me realize this – as long as I continue to play sports with the kid and keep on bringing him to cookouts, my haircut is a small and irrelevant detail. 

*  *  *

An After-Thought:  I wrote most of this post on the train to work today. When we pulled into South Station, I stepped onto the platform smiling about my adorable little boy. Then I got a text from our wonderful babysitter telling me that Teddy had been a total pain in the ass since I left and he had even convinced Annabel to join in his annoying disobedience (OK, she said it much nicer, but I know that's what she meant). I ended up yelling at Teddy over the phone as I walked to work; tossing out empty threats about losing baseball because I couldn't think of anything else to say and because I was so frigging mad. Anyways, I figured if I was going to mention truth even just once in this post, I had to give a fuller picture of life with a five year old. I am certain that every parent out there knows exactly how "full" that picture can sometimes be. 

Tuesday, May 28, 2013

Vital Passengers

Back in September as Brian, my Mom, and I carefully weighed my different chemotherapy options, I had an appointment with my (now former) PCP "Dr. Thomas" (who also happens to be my Mom and my Dad’s PCP). This was the second time I had seen Dr. Thomas since my diagnosis and I don’t think it was a coincidence that those two appointments were the first and only ones that hadn’t been preceded by a long wait in the waiting room.

As Dr. Thomas washed her hands, she made the usual doctor small talk – How was I recovering from my surgery? How was I sleeping? How was I eating? Prior to breast cancer, Dr. Thomas knew my hypochondrical tendencies and she attributed almost every symptom to stress. I didn’t usually agree, but there was no use arguing with her. That would just stress me out.

At that September appointment, Dr. Thomas asked me about my chemotherapy plans. Her questions, however, were so strange—she already knew so much about the options we were considering, despite that I had never talked to her about them. When I left the exam room, I told my Mom how strange it was that Dr. Thomas knew so much about my three chemo options. She must read my blog, I figured, but that made no sense. How would she ever know about my blog? In fact, I hoped that she didn’t read it because I hadn’t exactly been complimentary of her here. I ended up not worrying about it, mainly because she really didn’t seem like the blog type.

Of course, my Mom figured it out right away. I think your Dad told her, she explained as we left the doctor's office that day. Ah ha. Yes. In an instant, my heart sang and cried at the very same time.

* * *

My Dad and I don’t talk about my cancer. He asks me how I’m doing and he gives me all the love and encouragement that I need, but we quickly move onto to something more interesting like work or the kids. When it comes to playing the role of the “caregiver,” my Dad takes a back seat, not necessarily because he wants to, but more because there’s not any more room up front.

As much as I’ve written about how hard all of this must be on my Mom and Brian as my primary caregivers, I haven’t written enough about how hard it must be on my Dad. He’s in an awkward position—obviously wanting to do anything he can to fix this, but knowing that Brian and my Mom are always there to pick up the pieces before they even fall out of my hands.

Early on in the treatment process, I thought my Dad was in denial about how serious this could be. But the moment I learned of his discussion with Dr. Thomas about my chemo at his own medical appointment—the moment I realized that he knew every last detail we had been weighing—I knew that he wasn’t roaming around the Desert of Denial. Instead, he was suffering through all of this like we were. Seeing cancer up close is hard, but that sure doesn’t mean that seeing it from a distance is any easier.

*  *  *

Almost every time I drive by Walgreen’s with my Mom, she recounts the story of my Dad on the day after my first surgery. Obviously I don’t remember any of this but apparently CVS didn’t have the medications that I needed when my Dad went to pick them up. Little did they know that No was not going to be an answer; not for one of my Dad’s kids. Hours (and several trips up and down Washington Street) later, my Dad had secured the goods. But he didn't need to rush into the house and vent about his pharmacy adventure. He just wanted to rush into the house and hand me my pills.

My Dad is incredible that way. If I ask him for anything—to be at one of the kids’ school events, to drive them somewhere, to babysit them while I work out, to come to Teddy’s t-ball game, to run an errand for me, to join me for a treatment, anything—my Dad always says yes. And then he does it. No questions asked. He is without a doubt one of the most reliable, and generous people I have ever met.

He's also one of the most inspiring. In the midst of my treatment, my Dad (and my brother) started a new company. My Dad is an entrepreneur down to the bone (or artificial joint), and partly, I know why. My Dad is a visionary, a dreamer, a doer. He sees things bigger than I could imagine and then he builds them. He doesn’t consider failure as an option, or if he does, he doesn’t show it. He just powers on towards his vision.

While my Mom’s calendar includes all of my medical appointments, my Dad’s calendar is, I believe, focused on his life long dream—to put his children and his grandchildren through college. He and my Mom already achieved the first part, and despite that we all chose outrageously expensive schools, they somehow made it so that three of us could come out of our undergraduate years without having to worry about loans. I know that wasn’t easy for them. I hope that's part of why my Dad is so proud of it.

It’s not easy to ride in the driver’s seat of a car barreling down the path of cancer treatment. For Brian and my Mom, riding shotgun hasn’t been easy, either. But there are all sorts of different challenges for my Dad, and anyone sitting loyally in the backseat, along that treacherous road. Sometimes they need to be quiet when they want to scream. Sometimes they need to wait while the driver pulls over to a rest stop and cries on someone else’s shoulder. They need to watch to be sure that the exhausted navigators are heading in the right direction, but they can’t always see as clearly out the front window. And they need to be ready, at any moment, to change a tire or trek five miles for gas. Or sometimes, they just need to be the ones to suggest that someone up front turn on the radio.

I hope that these brave and loving passengers know how important they are. I worry that they think that from the backseat, they aren't important, or as important as someone else. But that couldn’t be further from the truth.

Yesterday, my Dad and my brother picked Teddy up and took him golfing while Annabel napped. Both Brian and I wanted to join, but we also saw an opportunity to relax for an hour or maybe even two, so we seized it.

My Mom stopped by while they were golfing and Brian, my Mom, and I sat under the sun in our backyard and sipped cold drinks. The topic of cancer didn’t come up once. It was Heaven.

Yesterday was the perfect example of how vital our passengers really are. Because as I sat there with my Mom and Brian, I thought of my Dad. He made that precious time possible; which meant that even though he wasn’t there with us, really, he was.

Saturday, May 25, 2013


In the last few weeks, I’ve learned something incredible—how much I could care about someone that I barely know. That someone is Ashley Drew. This post, while about me and my family, is also about her and her family.  

* * *

All of our neighbors know that my husband loves his lawn (he says our lawn, but I say his lawn). In the non-winter months, he spends countless hours caring for it; he built a shed to house the many tools and machines involved in its maintenance; and he battles a pretty constant case of poison ivy in order to make sure that the surrounding brush is just right. I admit, when he’s out there with his green thumb, I never really know what he’s doing (except for the mowing…I get that), but I can always see for sure that he has a calculated plan.

I sometimes wonder why Brian loves keeping up the lawn so much. As the parent of two young kids, he may just cherish the quiet escape. But even when given other (rare) chances to escape, he often chooses to work on the lawn. So I think it’s something deeper—perhaps that as a city boy, Brian loves the relatively big piece of land that we are blessed to call our own. He's proud of it, and it looks proud in return.

As much as Brian likes to care for the lawn all by himself, he has also done enough research to discover that TruGreen can come out and do something to the lawn (I have no idea what) for less money that it would take him to do it. So every non-winter month, TruGreen visits and leaves behind a receipt telling Brian to “keep up the good work,” and a little yellow sign of stick people and a dog crossed out by the "No" circle warning people to keep off the grass.

Ever since we moved to our house almost four years ago, Teddy has loved to help Brian mow the lawn with his own little plastic lawnmower. Just like Brian, he puts on ear phones and scoots around behind his Dad.  Sometimes Annabel helps too but she hates loud noises so usually she's just complaining, “Daddy yawn mower too loud!!”

Summer 2012
I have to say, our lawn looks beautiful and that age-old saying about “the grass is always greener” does not apply to me. I love my husband so much that I always think our grass is the greenest, even though I’ve never compared it to anyone else’s.

* * *

This past Wednesday, my Dad picked me up before anyone else in the house was even awake and we drove into Dana-Farber together. We followed my Mom, who still loyally attends every one of my treatments and medical appointments.

It was my Dad’s first time at Dana-Farber’s Yawkey building and I realized how much I have come to love that place by the feeling of pride I had for it as we showed him around. I can't remember the last time that I got a few hours alone with both of my parents and it was wonderful; not even tainted by the focus on my cancer.

Danielle, Dr. Bunnell’s superb P.A., met with us promptly after my vitals were taken. She answered several of my questions that had built up over time. In fact, I had been wrestling with a few of those questions for several months but I had never had the courage to ask them until now. 

It was Ashley and her family who gave me the courage to finally speak up. Recently Ashley’s mother, Joy, wrote about discussions they faced with Ashley's doctors regarding the most horrific of choices. Guided by Joy and Ashley's strength and courage, I decided that it was time for me to set my questions free from the cage of mounting anxiety that they have been living in for far too long. 

After some quality time with Danielle, Dr. Bunnell came in. I was so happy for my Dad to meet the captain of my treatment boat and we all had some good conversation about a wide range of cancer-related topics—body scans, sugar, deodorant, clinical trials. And lawn care. As with most of my questions, these ones were mostly focused on what I can do—or not do—to lower my chances of a recurrence. 

The lawn care part was interesting, especially given that those little yellow stick people signs had been bothering me a lot lately. I asked Dr. Bunnell if we should reconsider the chemicals we put on our lawn. This question lead Dr. Bunnell to an entertaining story about his own lawn care experience (or inexperience), but ultimately, Dr. Bunnell’s message was not that we had to end all chemical use on our lawn. He said that as long as I don’t eat the grass (I don’t), he wouldn’t worry about it. 

When our appointment was over, I texted Brian to tell him that the appointment had gone really well. My husband and my mutual man crush on Dr. Bunnell provides just the humor we need after one of those appointments and so we enjoyed some funny texts about that.

After my infusion and my therapy lady appointment, my Dad and I headed over to the Brigham so I could visit with Joy and Ashley. I spent only about 15 minutes with them in the thoracic ICU, but I will cherish those 15 minutes as long as I live.

Later that day, I told Brian about seeing Ashley and Joy and meeting Ashley’s father. I told him everything that Dr. Bunnell had told me, including the part about the lawn care. He was quiet, like he usually is when I blab on, but I knew that he was listening. 

On Thursday, Ashley underwent her open heart surgery and I headed back to work. After lunch, I had a meeting with Wendy and as I walked over to our meeting place, I checked my Facebook app for the 500th time for news about Ashley. There wasn't anything new, but just then, an email dinged in my Inbox. It was from Brian. All he wrote was this: 

TruGreen Out... Natural Lawn in. Spoke to guy for a while on the phone. All natural, organic treatment of lawns. 

I started crying but pulled myself together by the time I reached Wendy. 

*  *  *

Since that day, I've heard from several people who have tried the organic lawn care that their lawn never looked the same again. None of them meant that in a good way. I relayed this news to Brian because I know how much his green lawn means to him. I warned him that his four years of hard work may be erased in the name of "all-natural." He didn't seem to care in the slightest. 

I don't know if it's cancer or writing or Effexor or what, but sometimes, I have moments of clarity like I have never had before; moments where one single thing makes so much sense that somehow, for that moment, the whole world seems to make sense, too. Brian's Natural Lawn email somehow gave me one of those moments of clarity and ever since then, I've thought about why. I've come up with this. 

Those who are truly blessed are not people who successfully avoid pain. As I wrote earlier this week, no one can do that. Of course, there will be varying degrees of pain that different people must endure, but no one can escape it completely. Those who are truly blessed are not the rich or the beautiful or the ones who live to be 97. 

Those who are truly blessed are surrounded by people who love them with a true, deep, and devoted type of love. They are surrounded by people who would sacrifice for them -- whether that be their green lawn or their son's wedding, or a million big and small things in between. They are surrounded by people who say (or even, just think), I will do anything to make you better, and then go ahead and do it. 

I have been blessed with those people. So has Ashley.

*  *  *

On Wednesday, I also received a huge package in the mail from my cousin, Kirsten. She sent me all-natural house cleaning products. As I said, blessed.

Brian and Teddy, a few hours after I originally published this post. 

Thursday, May 23, 2013

For Ashley

"Through the centuries, we faced down death by daring to hope."

-- Maya Angelou

May all the prayers, skills, hope, and magic be with you today.

Air for Ashley

Tuesday, May 21, 2013

This I Believe

On a Monday night this time last year, I know what I would have been doing after the kids went to bed and I had finished any remaining work for the day—I would have been sitting down with my big bowl of ice cream watching Dancing with the Stars (as long as it didn’t conflict with the Bruins). I used to love that show—the costumes, the music, the personalities, the mysterious romances, the awkward female host, and obviously, the dancing. As I watched, I fell into an alternate universe of beautiful, tan, athletic bodies; where usually, the contestants’ biggest worry was whether they could learn the dances in time to perform that week.

One year later, things have changed a bit. Last night, after the kids went to bed, I sat down to read and to write. I haven’t followed Dancing with the Stars this season or last, and surprisingly, I haven’t missed it.

Yesterday morning on the train I started reading a book that had been recommended to me by more than one person—Emily Rapp’s The Still Point of the Turning World.

As the author explains on page one, “This is a love story, which, like all great love stories, is ultimately a story of loss.” She goes on to explain that on January 10, 2011, she and her husband “received the worst possible news: that our son, Ronan, then nine months old, had Tay-Sachs disease, a rare, progressive and always fatal condition with no treatment and no cure.” I know. This was some heavy reading for a Monday morning, or for any time, really.

To be honest, when I bought the book, I never intended to read it. I had planned on skimming through it quickly to find a particular passage that I had read in a book review that my aunt had mailed to me. In this passage, the author describes how writing helped her through the tragedy of caring for her dying son. I wanted to find this passage to provide supporting evidence for the mission of Writing Saves Lives. On my most superficial level, I wanted to be able to say, “See! I told you so!” But I had absolutely no interest in reading any more of that book. Even the cover made me sad. Why would I ever want to read a book about my worst nightmare—about a parent watching her child die? Why would I ever want to inflict such pain onto myself? I didn’t.

But in the last few days, something changed. A young woman, Ashley, who I met back in November while I was hospitalized at the Brigham started to slip from a bad place into a worse one. Unfortunately, Ashley knows serious medical issues better than anyone. In her short life, she has battled cystic fibrosis, respiratory failure, a double lung transplant, two or even three subsequent strokes, multiple brain surgeries, and so much more in between. Now, Ashley is battling an infection in her heart. From the information I have read on the Facebook blog that her mother (Joy) loyally keeps (entitled, Air for Ashley), I can see that Ashley needs a miracle.

Yesterday morning, immediately after I parked my car in the commuter rail lot, I visited Ashley’s blog. I was stunned by the news that Ashley had to be intubated the night before as her ICU team fought to stabilize her. She awaits open heart surgery this week or next, but the surgery is incredibly risky. From what Joy has written, clearly they have no choice.

I had been carrying Emily Rapp’s book in my work bag for a few days, hoping I’d find the time to locate that particular passage. After I boarded the train with a lump in my throat over Ashley’s news, I decided that the book might actually hold something that I needed. I’m half way through it and I can already see that it holds just that. For instance, it holds this passage:

We all avoid death—we don’t want to see it, talk about it or think about it. But digging into the experience of loss is not only deeply profound but artistically at some points, absolutely electric. People want (and sometimes encourage) the griever to numb it or erase it or at the very least ignore it, and all a writer can think to do is to pull it closer and wrap her arms around it and dig in her fingernails and hang on. “Don’t write if you don’t feel up to it,” people cautioned me when I told them I had started to write about Ronan. But it didn’t matter if I felt “up” to it. It was my responsibility; it was just job. It ordered chaos, focused energy, provided a way of “bearing up” that no period of restfulness could possibly accomplish. In other words, rendering loss was a way of honoring life. I brought my whole self to the page and used my whole heart to consider what I was writing. I let go of my old fears about how my work would be received, how I was or would be received, and just created. There was nowhere to go inside Ronan’s diagnosis, but on the page my mind could move, and I was, for that brief period of time—an hour, four hours, three minutes, five seconds—free. …

When I sat writing with Ronan on the couch, there existed inside this helpless, frantic sadness exquisite moments of pristine happiness and an almost-perfect peace. I propped him against my chest and circled my arms around him to get to the keyboard on my laptop. I stared at him and tickled him and kissed him and wished that my words, anything, could save him. But no, writing would not save Ronan.
But, I thought, it might save me.

I believe, with every cell in my battling body, that writing can saves lives. I believe that it saved mine. I believe that Joy’s words in Ashley’s blog will save others, and that they will save Ashley's courage and kindness -- her story -- for the world to see. I believe that every person has a story and that those stories are worth sharing. I believe that the truth is worth telling.

Last night, I crumbled and told Brian all about Ashley. He had no idea I had stayed in touch with this family, and he had no idea what to say in response to my hysterical tears. I still don’t really know what he was thinking. Probably something like, Why is she putting herself through this? Doesn’t she have enough to worry about? But he let me cry and that was what I needed. Then, I needed to write.

As I wrote, I realized how much my life has changed in a year. TV shows with beautiful dancers have been replaced by books about dying children. I check Facebook not for baby pictures or gossip but to find out what Ashley’s doctors have planned to save her. I draft work emails about complicated legal concepts that feel simple compared to the last email I wrote to my oncologist asking him a question about my cancer.

In the last year, I was shaken to my core (as a new friend much more eloquently put it). Then I looked around and realized that lots of other people have had that happen, too. Now, I often find myself drawn to those people. Even if their stories cause me pain.

I believe that there is absolutely a place for “escape” and when I have more time, I will likely return to watching Dancing with the Stars again. I may even go back to peeking into The Bachelor like I used to every now and then. But cancer has given me insight into an alternate universe where many people suffer great pain (yes, even bigger than not winning the Mirror Ball Trophy or not getting a rose). I believe that we’ll all be jolted into that universe at some point. A stroke, a bomber, a tornado, a terminal illness. The loss of someone we can’t live without. No matter how much we try to avoid it, we’ll all end up in a place from which we feel we can’t escape.

And when we’re there, we will all have to figure out how to cope; how to order our chaos and focus our energy. I write because when I write, a world that felt totally overwhelming starts to feel more manageable. I can see beauty, even if it's dark and sad. I can see light, even if just a glimmer. And I can find truth, even if I can’t find justice.

Thursday, May 16, 2013

Pour Some Sugar on Me

I’ve written before about how much I love weddings. I’ve described the sentimental parts that I enjoy so deeply and the little things that make the event so personal and personable. However, I haven’t yet mentioned the single most fun (and sometimes, ugly) five minutes of almost every wedding for me – when I’m out on the dance floor with my family and friends dancing my heart out to Def Leppard’s Pour Some Sugar on Me.

So let’s talk about sugar, shall we? In doing so, I am going to break one of one of my most important life rules – Don’t bother the rest of the world with stories about your dreams or your diets. In this space, I’ve made a few exceptions about my cancer dreams and today, I’m making an exception about diets.

Let me just get it out there to start – I L-O-V-E love sweets. In fact, I’d call myself a bit of a seasoned expert of all desserts chocolate in my area. Name a restaurant and I will give you the best chocolate dessert on the menu. PF Changs? Great Wall of Chocolate. Joe’s American Bar & Grill? Charles River Pie. One Bistro (one of Brian and my favorite local restaurants)? Chocolate molten cake. Chilis? Skillet chocolate chip cookie. Legal Seafood? Chocolate bon-bons.

Want to know the best kind of cupcake at my favorite bakery in Boston (Sweet)? It’s the one that is basically an undercooked brownie in the shape of a cupcake with whip cream on top. The outside has a soft crisp covering and the inside is just slightly gooey. It’s perfection. As for the “every day” cupcake? Stop and Shop tops Shaw’s and Roche Brothers in my mind. And cookies? Nothing will ever beat Otis Spunkmeyer's buttery pile of sugar and chocolate chips that I used to consume by the dozen in high school. But of course, to each her own cupcake and cookie.

Now that I’m drooling, onto the main part of this story.

Last week, I attended a work meeting with a prominent physician at an academic medical center in the area (let’s call the doctor a“he” and let’s call him “Dr. Domino”). I was there mainly to take notes (yes, I am very important), and for over two hours, I listened and tried to make eyecontact while I typed my little fingertips off.

As Mark and I were packing up to leave the meeting, our conversation with Dr. Domino turned to his research. Dr. Domino knew nothing of my intimate relationship with Sir Can, I mean, Can Cer, and before he took a breath of airlong enough for me to tell him about it, he had already launched into greatdetail about research he has been conducting in the cancer field.

For now, let’s just say that the information hit close to home…like very close to home. As a scientist, Dr. Domino was giddy about a clinical trial that has just begunabroad for a treatment that he believes may reduce breast cancer recurrence rates by 60% for some women. I liked the sound of that but I also had to grapple with the internal commotion that came with the reality that at thisphase in my treatment, one of the seemingly promising main strategies being tested is no longer available to me. So as he listed off statistics about all the women that the study could save, the hair on the back of my neck stood up and the room spun around me a bit. Of course I want all of those women to be saved. But the other sharp edge of that sword is that right now, it must meanthat they’re dying. Well that shits.

In Dr. Domino’s fascinating mini-lecture on his cancer research, he mentioned a patient (not a breast cancer patient) who had defied all odds, stabilized his tumor growth, and survived years when he had been given only months to live. By taking an inexpensive cocktail of drugs and by cutting sugar out of his diet (and maybe, by doing some other things that Dr. Domino didn’t mention), this patientwas controlling his cancer. I froze. Sugar? Did I just find myself back on this topic again?!?

Finally, I was able to work in a little joke about my own condition and I was able to ask Dr. Domino a question that has been festering in my mind since last August – Should I cut sugar out of my diet to help decrease my chance of recurrence? Dr. Domino looked me straight in the eyes and as clear as the fear he probably saw deep in them, he told me, Yes.

“Wow,” was all I was able to muster up in return. But inside, I knew that even before Dr. Domino had tacked on the “s” to “Yes,” I had already decided that me and sugar were about to part ways. For now, at least.

I won’t lie, that meeting shook me to my core. I drove home with my mind firing in a million different directions. I was terrified thinking back to all of the desserts I had consumed since my first surgery. A few months after the tumor was out of my body, as my fear of the cancer subsided, so did my motivation to limit my sugar intake. So almost every night for the past several months, I’ve eaten ¼ of the Edy’s slow-churned ice cream that I wanted (in other words, I wanted the whole container and I limited myself to ¼ of it). As I beat myself up about this, another more rational part of me kicked in. It’s fine. Some ice cream isn’t going to kill me.

On the drive home from that meeting, I talked to Rachel and she was as supportive and understanding as she always is. I told her what I wasgoing to set out to do – end my love affair with sugary foods – and as I did so, I felt something indescribably precious and empowering. I felt control. And hope. And a really strong fire inside.

No doubt cancer has put my control-freakish-ness to the test. One of my most difficult conversations with Dr. Bunnell highlighted this humongous weakness of mine. In my first appointment after I finished chemo, I asked him what I could do to help reduce my chances of my cancer coming back. He told me that exercise has been shown to make a difference, and every morning as I drag my tired butt out of bed, I remember that.

Dr. Bunnell also explained some other obvious things – not to smoke or drink a lot of alcohol. When I asked him about sugar consumption, he shifted up a gear on his super-smart-scientist-information-mobile. I lost him as he sped away with a trail of dust. When he was done talking about somestudy involving diabetic cancer patients (I think), he came back around to me again. Then I asked for the Executive Summary. So it doesn’t matter if I eat sugar? No, he answered.

At the time, I really liked that answer. Because I really love ice cream and cupcakes and Great Walls of Chocolate. I love to lick the frosting out of the container by the spoonful, so I liked that the ChiefMedical Officer at the Dana-Farber Cancer Institute basically told me that I could enjoy all of those delicious things, and since then, I have. Until my conversation with Dr. Domino.

Let me reiterate what I always try to make clear – this blog has never been and will never be one based on science. It’s based on one thingand one thing only – what’s going on in my own wacky mind. And so thisparticular blog is absolutely not anargument that all cancer patients should eliminate sugar from their diet. In all honesty, if I consider Dr. Domino’s advice next to Dr. Bunnell’s, I basically think I have a 50-50 shot of making any difference with this change. But here’s the bottom line – I’m not doing this so much for my body as I am for my mind. As I’ve always said, the mental part of cancer has always been the hardest part for me.

Dr. Domino said that I could call him and he would talk tome about specifically what I should and should not do when it comes to my diet and other practices to reduce my chance of recurrence. I am definitely going to take him up on his offer after we have concluded our work project for him. My first question for him will be whether I need to limit natural sugars (like those in fruits). I’m so curious about that, and I’ll provide an update once I talk to him.

In the meantime, however, I have cut a significant amount of sugar from my diet. And an absolutely amazing thing has happened. I feel better. So much better. Let me explain.

A week without sugar has not made me feel physically cleansed or more energetic or anything like that. In fact, I haven’t noticed much of a difference in the way my body feels. I have, however, noticed a big change in my mental and emotional state. And I’ve figured out why – with this change, I feel in control of something and I love that. I miss that.

If my therapy lady saw this entry, I wonder if she would think that I have taken several steps back; that I am clinging to something I think I can control even though I can’t. That I’ve created an illusion. Maybe I have. But I don’t care. If that illusion makes me feel better, then I’ll take it. Actually, not only will I take it, but I will cherish it. Kind of like I cherish hope.

And so in the end, this musing is not about sugar. It’s about control and hope and power. Every minute, every meal, every time I decide to pass on licking the frosting off a second piece of cake or grabbing a pieceof candy from the secretary’s candy bowl, I feel like I am doing something to help my chances of survival. I know I should be embracing uncertainty. But shouldn’t I also embrace something that I know makes me feel so much better? Even if it’s just an illusion?

Tuesday, May 14, 2013

Good Words: Falling in Love

Tonight, an excerpt from a book that I just ordered on Amazon thanks to a good friend's recommendation.  The book is, Big Questions from Little People and Simple Answers from Great Minds. I enjoyed every line of this answer, especially the P.S.

Oh, and the planet I fell onto? It includes ice and pucks and big smelly bags of sweaty equipment. But it's an awesome planet, proven by the fact that all alone, I wouldn't care much about the Bruins, but on this other planet, I couldn't wait for Teddy and Annabel to wake up this morning so I could tell them that their hometeam won. And watching a come-from-behind victory with my hubby was as good as it gets.

How do we fall in love?
By: Jeanette Winterson

You don’t fall in love like you fall in a hole. You fall like falling through space. It’s like you jump off your own private planet to visit someone else’s planet. And when you get there it all looks different: the flowers, the animals, the colours people wear. It is a big surprise falling in love because you thought you had everything just right on your own planet, and that was true, in a way, but then somebody signalled to you across space and the only way you could visit was to take a giant jump. Away you go, falling into someone else’s orbit and after a while you might decide to pull your two planets together and call it home. And you can bring your dog. Or your cat. Your goldfish, hamster, collection of stones, all your odd socks. (The ones you lost, including the holes, are on the new planet you found.)

And you can bring your friends to visit. And read your favourite stories to each other. And the falling was really the big jump that you had to make to be with someone you don’t want to be without. That’s it.

P.S. You have to be brave.

Ten years ago...little love birds on their first and last cruise. My favorite part of this picture is the pile of food in the background. My second favorite part is Brian's big white forehead. 

Sunday, May 12, 2013

She is here

Friday after work, I walked to North Station instead of South Station. It was a beautiful night, despite that it was supposed to have been raining, and as I walked along Congress Street, I remembered back to exactly one year ago when I walked that very same route to catch the very same train.

I take the train from North Station only once a year -- the Friday before Mother's Day. That's when I head north out of Boston to Winchester Center instead of south to Canton Junction. My Mom picks me up a mile or so from the hospital and we drive up to New Hampshire for our one-night Mother's Day getaway. For the past five years, I have looked forward to that trip like I look forward to Christmas and this year's excited anticipation was no different.

In fact, in most respects, this year's Mother's Day trip wasn't different at all. My Mom and I talked almost all of the way up I-95; we caught up about family and work and anything random that popped into my head. We munched on some snacks, listened to music between topics of conversation, and sat in traffic completely unbothered by it.

My Mom and I chose to explore a different spot this year and we stayed at a beautiful hotel in New Castle, next door to Portsmouth. Our dinner was delicious and we fell asleep early on feathery white pillows, so comfortable and so content. The next morning, after enjoying one of the tastiest breakfast buffets we have ever had, we explored the shops in Portsmouth for hours, just before the rain set in. It was perfect; another little slice of Heaven.

* * * 

Although I never felt like bringing it up as I blabbed away to my Mom on Friday night, the train ride from North Station earlier that evening had not been an easy one. As I sat there for the 18-minute journey, I thought back to same ride exactly one year ago. I was surprised that I could remember what I had read and even what I had been wearing. But then, without being able to reign in my wandering mind, I thought about next year. Would I be on that train again? Will all of this treatment have worked? Will my Mom be OK if it hasn't? And then I started to feel completely overwhelmed, kind of like I felt on my birthday. I realized that despite how far I've come, the future can still be a really scary thing for a cancer patient.

As I felt that fear start to suffocate me, I fought to find peace. Eventually, I did, thanks to friends out there who had absolutely no idea that I was thinking of them; thanks to brave men and women who had no clue that they were rescuing me.

* * * 

I have four friends and several former students who have bravely suffered through the tragic loss of their mother. Of those tragedies, I know very little. Sure, I may know the disease or the circumstances that brought their beloved mothers to an early passing, but I have no idea how my friends felt as they grieved, or how they feel as they continue to try to cope and to heal. All I know is that I have seen men and women continue on, several to raise their own beautiful families with strength and courage and grace, just like I'm certain their moms raised them.

I recently wrote about how angry I get when people abuse what I so desperately want to hold onto -- health, family, time. On Friday's train ride, after I wallowed in my own fear and misery for a few minutes, I realized a huge irony in the way I was behaving. There I was, on my way to New Hampshire with my Mom, and I was letting my fear ruin it. I was letting my fear of next year damage the joy of this year. And right after I had written a blog about living in the moment?!? I felt like such a fraud, and a total spoiled brat for mistreating something that I knew my friends would give almost anything for.

I admit, the scariest thought of the weekend also popped up on that train ride and a few times thereafter. It was the thought that Mother's Day could one day be painful for my children; that they could feel the loss and the grief that my friends may feel while people (like me) spend time with their mom. In those terrible moments, my brave friends once again saved me. I thought of their children and the happiness that those children bring them. Yes, Mother's Day must hurt, but I know they don't let that hurt suffocate other deep joys. And so I shouldn't (and didn't), either.

* * * 

Once I picked myself up from my depths on that train ride, I had almost reached my destination. What to do with a few extra minutes? Check Facebook, obviously. When I did, I came across a photo that my friend, Lauren, had recently posted. It was of a Mother's Day gift that her son had made her at school -- one of those fill-in-the-blank worksheets where the kids had to answer a few questions about their mother and then color all around the text before they cut it into the shape of a flower. My Mom is _____. She likes to ____. Her favorite food is ____. 

The last fill-in-the-blank brought tears to my eyes. The best thing about my Mom is _____. Lauren's little boy had answered: That she is here.

I swear, little kids often find the words that I couldn't find if I sat for hours in search of them. I couldn't stop thinking about that answer. Even as I turned the light off that night, I was still smiling at the clarity that this little boy had brought to me -- that the best thing about my Mom is also that she is here. 

I hope that decades from now my kids can say the same -- that their mother is here. If, however, they can't, I hope they can somehow do what I've watched my inspiring friends do -- miss their mom with grace and courage and never with a weight that holds them back, and lead their lives as if their mother is there. Because she is. And she always will be.

Teddy got just what he wanted for Mother's Day ... a game of baseball in Southie with Daddy, Papa, and Uncle Greg. (Annabel and I sat nearby and read books.) 
Then I got exactly what I wanted ... my exhausted baby girl snuggled with me for almost 10 full minutes. Pure Heaven. 

Thursday, May 9, 2013

Life's Little Instructions (with a twist)

When I was in middle school, my Mom bought me a little paperback book that I have kept by my bedside ever since. It's called Life's Little Instruction Book and it was written by a father to his son. The book is a compilation of 511 "suggestions, observations, and reminders on how to live a happy and rewarding life" (according to the cover).

I love this book, even if I don't necessarily agree with some of the instructions in it (for example, #81: Avoid sarcastic remarks. Yeah, sure, I'll do that... Or #124: Know how to change a tire. Really?!? People still do that?!?). If nothing else, I find it fascinating to see what one parent would want his kid to know; how one person packages up his life experiences and hands them along for his child's benefit.

Of course, I find huge irony in the idea of an instruction book on life. I find that most of the time, no matter how much advice I have gathered or research I have done, my very best learning always seems to come from my own life experiences. A little paperback isn't usually going to cut it. Still, I love the book and the sentiment behind it.

My mother is not one to offer unsolicited advice; I love that about her. While she teaches me so much about life, it never feels like she's giving me instructions. Instead, it feels like she's sitting next to me on my ride; always there to talk, to offer directions, to help me figure out which route is likely the best one. She lets me drive, but she'll take the wheel if I'm not able to.

Despite that my Mom is not the type to draft any sort of list of life instructions, there is so much that she has taught me that I want my own kids to know. And so I arrive at this Mother's Day post.

Below is my version of Life's Little Instruction Book, with a twist. The twist is that these are all instructions that I've learned from my Mom; things that I think she would say if I asked her to sit down and make this list. I compiled these suggestions, observations, and reminders in the mindset that I was telling my own children about what my Mom has taught me. I believe whole-heartedly in almost all of these instructions and where I may not completely agree, I have noted so with an asterisk.

Happy Mother's Day to all the moms out there. I'm certain that your children could make a similarly long list about all that you have taught them. And as I've learned in my 33 years, that list just keeps on growing...

*  *  *

Life's Little Instructions
Inspired by your Grandmother, Anne Michelle Lang

For Teddy and Annabel
Mother's Day 2013

1.  No work meeting is ever so important that you can't interrupt it if you need me.    

2.  Let your spouse do things that make him/her happy even if you don't understand them. 

3.  Don't be afraid to think one thing even if everyone else thinks something else. 

4.  It's never too early to start Christmas shopping. 

5.  You can never have enough containers or blank journals. 

6.  You can never over-label.  

7.  When having a difficult conversation, always think of the other person's perspective. 

8.  Don't be afraid to have really high standards. Then stick to those standards. 

9.  If you see something cute in a gift shop, buy at least five of them.

10.  Always keep a scrapbook.

11.  Test out lots of paint colors and view them in all different sorts of light before you paint the whole wall.

12.  If you don't like new furniture the day after it arrives, it won't ever grow on you.

13.  Always keep an extra pair of glasses.

14.  Bring a big umbrella to the beach.

15.  Always support your kids' interests, even if you aren't at all interested.

16.  Go to the circus.

17.  Go to plays and concerts.

18.  Splurge on the good seats.

19.  Be on time.

20.  Don't settle for mediocre. Especially mediocre doctors.

21.  Buy lots of new books soon after the school year ends.

22.  Don't be afraid to ask questions.

23.  If the computer isn't working, make sure it's on.

24.  Find a good handyman or woman.  If possible, marry him or her.  If not possible, pay them well.

25.  Don't dig up the front lawn until you have a clear plan.

26.  Buy a fake Christmas tree.

27.  Read as much as you possibly can.  Even if the books are "total crap."

28.  Go apple-picking but don't feel obligated to pick apples. 

29.  Find a job near where you live.

30.  Smile and laugh a lot.

31.  Remember that being smart and kind is infinitely more important than being good looking. 

32.  If you throw a party, always have brie, bread, and extra dessert.

33.  When you clean the basement, order Papa Gino's for lunch.

34.  Undercook brownies.

35.  Rare meat is the yummiest.  * I completely disagree. Order your meat well done!

36.  People only hurt themselves when they exercise.  * Exercise anyways.

37.  Beware of mopeds. 

38.  Don't ever ride a motorcycle.

39.  Swear only if you're joking or in traffic. 

40.  Drink responsibly.  If with co-workers, don't drink at all.

41.  Never ever drink and drive.

42.  If you aren't going to check your voicemails, say so on your recording. 

43.  Don't expect to have fun with a newborn. It's utterly boring. 

44.  Treat anyone who watches your kids very, very well.

45.  Go to the movies.

46.  Don't buy clothes that need to be dry cleaned.

47.  Let your kids be themselves.

48.  Listen.

49.  Watch.

50.  Think.

51.  Put on good music and sing when you clean.

52.  Buying fabric counts as quilting.

53.  Support artists.

54.  Watch the Olympics.

55.  Keep up with People Magazine.

56.  Listen to NPR.

57.  Give the garbage men a big Christmas gift.

58.  Draft out the text of a card before you write it for real.

59.  RSVP as instructed.

60.  Embrace a day of cleaning the basement with someone you love.

61.  Buy your kids Legos.

62.  Enter contests you think you'll never win.

63.  Dream big. Really big.

64.  Watch anything written by Aaron Sorkin.

65.  Watch the following movies once a year: A Few Good Men, American President, Dave, Pride and Prejudice. 

66.  Find good excuses to get out of going to the Thanksgiving Day football game.  * Go to the football game. No excuses allowed.

67.  Don't ever eat the outside of a loaf of bread if there's still more of the soft inside to be eaten.

(I took this photo of Annabel in early 2013 when I turned around in the car and noticed that she had done just what her Grandmother would have done -- eaten out the inside of the bagel! Genes are very powerful things!)

68.  Visit the bead store.

69.  Stock up on Diet Coke.  * But drink lots of water!

70.  Try the key lime pie.

71.  Play cards with family.

72.  On work days, get up as late as you can so that you can still get there on time.

73.  Look at people when they're talking to you.

74.  Wear your seatbelt.

75.  Always be thinking about what you could do to help.

76.  Ask for help when you need it.

77.  Tell people when they're doing a great job.

78.  When deciding between sitting by the lake or getting a massage, sit by the lake.

79.  Make homemade oatmeal cookies and chocolate chip cookies.

80.  Be weary of fanatical sports fans.

81  Avoid traffic.

82.  Follow through.

83.  Write things down immediately so you don't forget them.

84.  Sometimes just being there is all that someone really needs.

85.  Make sure you marry someone who is unselfish.

86.  Enjoy vanilla milkshakes from McDonald's.

87.  Always keep your options open.

88.  Revise your writing.

89.  Don't send offensive emails from your phone. It's too easy to mistakenly send it to the wrong person.

90.  Build big shelves in your basement.

91.  You can never have enough Christmas, Halloween, or Easter decorations.

92.  Forgive people that you love.

93.  Always wear comfortable clothes and comfortable shoes.

94.  For Annabel: You don't need a lot of make up. You are already so beautiful.

95.  Add color to your life. 

96.  Always carry a pen. 

97.  Always have someone with you if you are in the hospital. 

98.  Give to Good Will. 

99.  Spoil your kids on Christmas. 

100.  Relax on vacation. 

101.  Know that you're stronger than you could ever even imagine. 

102.  Never forget how loved you are.