Wednesday, October 31, 2012

Happy Halloweens

I've mentioned the steroids previously, but the day before, the day of, and the day after my chemotherapy infusion, I take four pills of powerful steroids to ensure that none of the fluid I will receive collects in places that it shouldn't (like my lungs or my brain). It's a remarkable medicine, like they all are, but this one is funny because it makes me absolutely wired.

An hour ago, I woke up ready to go downstairs and do 30 minutes on the elliptical in the basement (I would have much rather walked outside, but I could hear the rain falling in sheets). I was so proud of myself for sleeping the whole night before my second round of chemo without any Ativan. In all honesty, I'm not at all nervous for today so I didn't feel like I needed the Ativan even though I felt completely entitled to it. My alarm clock is only two feet away from my head but I can't read it until I put my glasses on. When I did, I was shocked to see that it wasn't 6AM like I thought it was. It was only 2:02. Huh.

I could tell there was no way that I was going to be able to fall back asleep. But I gave it a shot for about 45 minutes. Then I quit and came downstairs to write and get some work done. (Exercising feels inhuman at this hour, steroids or not.) So here I am. Not really in need of writing as therapy for emotional distress, but rather, in need of it as something to occupy my overactive mind and body for some of the next three hours until my kids wake up. And in want of it because I've started to think of this space more and more like a public diary, even a memoir if you will, on those days when I don't feel like I need it to be my therapy.

Since I have nothing particular to write about and my stomach is growling, I'll go grab a bowl of cereal (with my organic milk, sigh) and hopefully come back with an idea. ...

My first proof that it really is far too early came when I opened the dishwasher to grab a clean bowl and the dishes were still hot. Oh well. Tonight I'll be sure to take an Ativan.

As I crunched my sugar-less Grape Nuts in the near darkness of my living room (lit only by the strings of ghost and pumpkin lights hung across the mantle), I thought about the day ahead. Since it's Halloween, I got to thinking about that.

Like most kids, I loved Halloween. The first Halloween I remember I was probably only about five or six. It must have been one of my last Halloweens in Duxbury, because we lived there at the time, and we moved to Canton when I was seven. That Halloween, I decided I wanted to be a ballerina. I think Rachel was an astronaut. Thinking back, it was a funny choice of mine because I never did ballet, I never cared for princesses, and that was the last girly costume I wore until I hit college (and those girly costumes had a different flavor). Lots of embarrassing family photos adorn my parents' house of later Halloweens with me dressed as a football player (I wore my Dad's BC game shirt) or a washing machine (Rachel was the dryer).

On Halloween, my parents would get home early from work and we would carve the pumpkins. I always loved playing with the gooey insides and threatening to put it on my Dad or Rachel or Sean's shoulder (I think my Mom was already hiding in the other room with her book by this point -- she's a reluctant Halloween-er).

Once the pumpkins were lit and the newspaper full of goo was emptied into the trash, it was time for trick-or-treating. On that ballerina Halloween, I remember my parents trying to convince me to put on a warm coat or pants over my leotard, tutu, and tights. But that would have totally ruined my costume so I refused. They tried again, but I was more stubborn than they were. That, or my parents had a better technique -- they let me go out without a jacket and see for myself. So I did, and a few houses later I was begging for anything to keep me warm. My Dad had quietly stashed my coat in the red wagon that he used to wheel us around, and costume or no costume, I put that thing on and zipped it up tight. Of course, I was still cold and I'm sure my Dad dealt patiently with my complaining. He was always so good like that. And he was, and still is, so much of why I love Halloween.

When I got older, and Halloween was no longer about my Dad pulling us around in the red wagon, I wasn't such a fan. In middle school, I wished I could just disappear for the night. I was too old to be a kid but too young not to be. It made me so sad to see kids egg a house or even toilet paper it, and I worried that someone would fall off a ladder trying to clean up the mess. Back to that far-too-heightened sensitivity again. Oh well. Part of me hopes Teddy throws a few eggs or wastes a few cans of shaving cream when he's in middle school. Only on the street of course, and never on anyone's house or in someone's eyes. Sure, that all sounds likely.

By college, I dealt with Halloween, too shy to enjoy wearing skimpy costumes, but too wrapped up in college culture not to. Now that I've got these fancy new boobs, however, I may be singing a different tune next year. I'm kidding. Kind of.

Anyways, I started to love Halloween again when Teddy was two. I tried to love it the two Halloweens before that, but the poor kid hated Halloween as a baby. I guess I can't blame him. It is kind of odd to have perfect strangers dressed in costume ringing the doorbell for candy.

But when Teddy was two and three, we were settled into our wonderful new neighborhood and Teddy (and Brian and I) had grown close with neighbors that we all adore. Brian volunteered to stay home and pass out candy and the last two years, one of my siblings joined me and Teddy for the trick-or-treating adventure. When Teddy was two, Rachel was in town, and last year, Sean kept me company. I remember those nights so clearly, and loved every (OK, almost every) moment of them. I could have done without the moments of physically forcing Teddy to wear his jacket. You'd think I would have learned, huh? Because that kid is hot-blooded, and a few doors down, he was sweating and begging me to hold his coat. Serves me right for not learning from my Mom and Dad's parenting techniques.

Eventually, we joined a huge group of neighbors and their kids and walked around our perfect-Halloween-sized neighborhood. Rachel, and later Sean, and I laughed as Teddy tried (and failed) to keep up with the group. He'd always be the last one to the door, typically having tripped at some point on the way. We'd help gather the candy that fell from his bag and I'm sure he left a little trail of Kit-Kats and Reese's Peanut Butter cups that we missed in the dark. Then we'd stand back and watch him wait for his turn to fill his bag. The first time I watched this, and even the second, I found it to be such a remarkable thing. I was watching Teddy become independent, or at least, more independent, and it kind of melted my heart.

I've dropped my kids off at full-time day care since they were little babies, so I'm not really one to get all emotional at the sight of my kids doing their own thing without me. I've heard Moms say it's hard when their kids aren't sad to see them go, but in all honesty, I've never felt that way. The relatively few instances when my kids have yelled for me at drop-offs, I've had to fight back the tears and the impulse to run back in and scoop them up. Typically, however, drop-offs are very smooth, and every time they are, I'm nothing but elated, thankful for their great teachers, and even a tad proud of myself and Brian for finding a school where the kids would be so happy.

But watching Teddy run ahead without me on Halloween was powerful for me. He didn't really want me for company, or at least, not for primary company. He wanted his friends. At first I tried to make conversation as we walked between houses -- What kind of candy did you get, buddy? But he didn't know and didn't care. He was just trying to keep up with the group whose legs moved much faster than his did. So I quit trying, and just became the person that held the parts of his costume that he disassembled as he heated up. I cherished the sibling bonding time and I enjoyed peeking in neighbors' houses to see what the insides looked like. All the while, I watched my son from a distance. And as I watched him be very cautious of any scary Halloween decoration, and as I listened to him mimic the happy screams of the group when they happy-screamed, I loved him so much.

This year, Teddy decided to be a pirate. Since Annabel is going through a phase where she constantly wants to take her clothes off (I really hope that ends before she reaches elementary school, and it better darn well be over by high school), we thought our best shot at her costume was whatever costume Teddy wore, so in theory, she'll be a pirate too. We went to a Halloween party last Friday night and all we got on her were the pants, so I'm not expecting much. But being costume-less and shoeless didn't stop her from spinning around, shaking her hips, and bouncing her shoulders up and down to the DJ's music, alone in the middle of the dance floor last Friday. So costume or no costume, she's got the spirit, and she loves herself a piece of candy.

The last few years, I've dressed up in theme with whatever Teddy chose. Last year, he was Woody from Toy Story and I was Jessie. This year, I have my modest pirate costume ready. If I purchased the women's pirate costume from iParty I certainly would have been able to flaunt my new boobs, and most other parts of my body, but I don't think tonight's post-chemo neighborhood Halloween party is really the time or the place for that. So I went with a big long and messy red-haired wig and last night, per Brianne's good idea, I added dark beads and feathers to it. I have a pirate scarf, eye patch, hook, and a jacket, which will definitely be more fitting for the occasion.

Brianne and Seamus are coming over tonight to see the kids and pass out candy while Brian and I take the kids out. Did I mention yet that they are the best? I can't wait for their little one to join the fun next year. And it's not the steroids talking when I say that that thought makes me want to jump out of my seat with excitement.

It's a neat thing watching our kids become more independent. Annabel won't even let us help her get dressed or put her shoes on anymore. I can do it! she yells, and then she flips on her jacket or puts her "snee-coes" on the wrong feet. But I don't dare switch around her shoes or fix her jacket when it's upside down, because if she put them on that way, that's how she wants them. So I let her be. Just like my parents did with my tiny ballerina costume on a frigid night, I'll wait for her to figure it out for herself.

A few days after my first chemo treatment, I asked my Mom what she thought of it. It went great, huh? She agreed that it had. I told her that I hadn't been scared but asked her if she had been. She paused, smiled, and said something like, Well, I did have to watch my kid get chemotherapy. Good point. And that can't be easy. I've said it several times to different people, but I'll say it again for the record. A lot of the time, I think it's easier being the patient than being the loved one of the patient. I can't even imagine watching any family member or friend, or (gulp and shiver) one of my children go through this. In fact, the most oddly comforting thought I have about my chemo is (knock on wood) that I'm not driving Teddy or Annabel in for treatment. Because I know what it feels like when they stick me with the IV, when my Allies start to flow into my veins, and when the symptoms set in after that. I know I can bear them and I know I will win. But I don't know how I'd handle watching someone I love bear this burden.

Meanwhile, my loved ones need to do just that. They are forced to sit back and watch me keep up and keep going. I'm sure they feel like I do when I watch Teddy run full speed down the grassy hill of a neighbor's house after he collected his Halloween candy. I desperately want to be right by his side to hold his hand so he doesn't fall. Or I want him to be clad in full hockey pads, helmet and all. (Every year I try to get him to be a hockey player for just this reason!) But every year that he chooses to be something that doesn't involve full padding and a helmet, I need to just stand by, warn him if I see danger, and be there to help him pick up his candy when he falls. Then I need to watch him run ahead again without me. And I need to appreciate the joy in that sight. Because it really is one of life's "little wonders."

Yesterday when I was in the shower, my stubbles of hair started to fall out in large clumps. I knew it was coming because it's time, and because for days it would come out with the slightest little pull. At first, I started to cry at the handfuls of hair. I yelled for Brian to pause the Wii game he was playing with the kids and come up (Annabel is quickly figuring out that her remote control doesn't do anything, and she's not happy about it). He saw my hair in my hands, and assured me that it will all be OK. I know it will, I told him, and he gave me a kiss. But when he went back downstairs, I cried a bit more. Then I remembered so much of what I have written about. That I am who I am when no one's watching. When I'm not in Monique's salon surrounded by my family and friends. When I'm not posing for photos that the whole world can see. I remembered that this period of my life will be over soon. That the medicine is working. That I need to be strong for other people, not just myself. And I quickly pulled it together.

In the next day or two I will likely be really bald, not GI Jane bald. To others, I may not look tough or strong or athletic with that hairdo, or lack thereof. Many people, especially strangers, will probably just think I look like a sick cancer patient. But I promise you, even if my stomach, chest, feet, mouth, or breast is hurting, or even if I just got over a terrible nosebleed, I don't usually feel like a sick cancer patient. I feel like a strong and healing fighter; a healthy mother, wife, sister, friend, and daughter. I'm grateful and I'm proud, for so many things, including for the fact that I'm no longer afraid of the time that I must spend by myself. In fact, I've kind of come to love it. I've got a few hours to go before the kids wake up, we get them ready for school, and we leave for Dana-Farber, and I've got much that I still want to do (OK, that must partly be the steroids talking). Either way, I no longer feel alone even if I am. Because being in the shower with my hair in my palms was sad, but it was bearable. And even though I sometimes need to run ahead without holding anyone's hand, I'm certain that if I fall, someone will be there to help me pick up my candy.

(PS -- After re-reading this entry and realizing its length, I think a better title would be "Halloween Blog on Steroids.")
Halloween 2011.

My Lil' Matey, 2012. 

Annabel and Uncle Sean at Annabel's classroom Halloween party.

Tuesday, October 30, 2012

Someone Else's Shoes

My junior year in high school, I had Mr. Carta for English. At the end of every week, no matter what else was going on in class, Mr. Carta required us to turn in a “writing sample.” This continuous assignment was my most favorite (although the presentation that Brianne and I did on the JFK assassination for Mr. Healy’s U.S. History class would share the top spot). I loved writing samples because they had no rules. We could write a poem, a short story, a rap, a chapter of a novel, or anything else we could think of. We could write about any topic, in any time period, with any voice. After a few weeks of Mr. Carta’s class, I had so many writing samples built up that I could have just stopped there and turned one in every week for the rest of the year. But I didn’t stop writing. Because even back then, although I didn't know it, writing was my therapy.

I kept a binder of all of my high school writing samples, and this past winter when I was searching for inspiration for a town writing contest that I had decided to enter, I returned to that binder. As I flipped through, I was somewhat impressed by my 17-year-old self, but much more than that, I was, at least at first, horrified by her. As I combed through poem after poem of really depressing stuff, I thought to myself, My goodness, I’m surprised Mr. Carta didn’t have me committed to a teenage mental institution!

Almost every poem I wrote in high school was about some horrific or totally depressing real or fictitious event. I wrote about plane crashes, the atomic bomb, mental illness, poverty, and bullies. Goodness gracious. In one of my favorite poems, a son and his father converse about the father pushing the son far too hard to succeed. In another poem, a girl suffers over what she perceives as her own horrendous ugliness. Mr. Carta probably thought these were based in some reality of my own suffering. But they weren't. They were just my way to process so much of the world that I perceived and didn't understand. Those parts of the world that concerned me.

I distinctly remember sitting in my bedroom crying as I wrote about these Debbie Downer topics. Once I finished my writing, I’d typically head out to gymnastics, swimming, or basketball practice, or Brianne and Rachel and I would get together and find something to laugh about. And I’d be just fine. I never dwelled in sadness. I just needed to get my overflowing emotions down on paper. Put them in a safe place. Writing samples were that safe place. Just like this space is now.

Even before high school, I was extremely sensitive, perhaps too sensitive. I remember when my Mom and I went shopping, I would feel so sad for any sales person who stood in an empty store. As a young girl, I would get so upset with worry that that person was lonely and I would be so relieved if my Mom bought something. Perhaps many of the storekeepers didn’t even care that their store wasn’t drawing in customers. But for some reason, I really did.

Brian understands me, because he’s the same way. Even today if we go into a family-owned restaurant and it’s too quiet, we both get blue. We worry that that restaurant is someone’s life dream and that that someone is crunching numbers worried that he or she won’t be able to make ends meet. I’m proud to have this sort of empathy and compassion, and thankful to my parents for somehow very subtly instilling it in me. But at the same time, it can be emotionally draining and physically exhausting. Sometimes I just wish Brian and I could enjoy our Thai food without worrying about a stranger's life dream.

I honestly never dreamed that I’d get cancer. But for a long time, I’ve worried about being hit by a drunk driver. (Man, this post just keeps getting cheerier and cheerier, huh?) So when I flipped through that high school writing binder and found a poem that I wrote about drunk driving, I decided I would re-draft it for the writing contest. For weeks, I worked on the poem almost every day on the train to and from Boston. I ended up re-writing the whole thing. Just for kicks, here it is:

A Chance

Old bulb flickers
Above the street
A city on
The edge of sleep
Windows locked
Stories high
Thick heat rises
Babies cry

Streetlight dies
The night is old
A mother’s hopes
Long been sold
Life a battle
Day by day
Children wander
Beast and prey
Heavy burdens
Anchor dreams
Sudden ends
No good means

On a curb
A lonely street
A child tries
To dodge the heat
Sits and wonders
Looking down
What lies beyond
The haunted town

And while a daring
Young mind soars
A father gulps down
Just one more
Cold dry glass
Eases sorrow
Fills a space
Long been hollow
Laughs and stumbles
Keys in fist
Engine roars
Through sewer mist

A mother drifts
’Til silence breaks
Rubber burns
A dreaded fate
Shadows gasp
A shallow breath
Not surprised
By sudden death
Now trapped beneath
An empty soul
Now filled with grief

Where light was dead
It flickers on
Where silence lead
The sirens’ song
Where everything’s
A shade of grey
Rarely clear
Who’s beast or prey
A child born
With much to give
Ends up begging
Just to live
On a curb
A lonely street
Hopes and dreams
So incomplete
A mother wakes
As blue lights dance
A child dies
Without a chance

When I shared this poem with my Mom and my sister, they both joked about me needing to write about something happy (yes, they complimented it too). I laughed it off, slightly embarrassed that I’d come up with something so depressing. Especially because I’m such a happy person. 

I invented the characters and the events of that poem. But the context is real, and I think about these things all the time – poverty, race, parenthood, education, hope, opportunity, drinking and driving. These issues concern me and writing about them helped.

My poem won third prize in the writing contest, even though for all I know there were only three entries. Teddy and I went to the public library one night to hear all of the winners read their work. We ate chocolate chip cookies in the back and when it was my turn to read, Teddy came up to the front of the room with me. At first, I thought I shouldn’t read about death in front of him. But I watched his body language closely that night and he was far too concerned with everything else in the room to really care about what I said. (Who am I kidding -- he rarely listens to me in public.)

I wrote the poem to be read on paper and not to be read aloud so I wasn't crazy about reading it in public. Plus, I was so happy to be at the event that I tried hard to dull my cheery tone to fit the somber tone of the poem, but I think I failed at that too. When I was done, an older woman sitting next to me asked me in a very low sympathetic voice if I lost a child and I said thank goodness I hadn’t. Teddy and I scooted out quickly after that because it was already far past his bedtime.

I thought a lot about that woman’s question that night. Today, I’m still thinking about it. Because her question has a lot to do with empathy and compassion, and those things have been on my mind lately.

Perhaps to my own detriment, I can’t help but put myself in someone else’s shoes. But in the last few months, I’ve spent so much time writing about my own shoes, that I haven’t thought enough about the shoes on my readers' feet. I’m sure every person reading this now has his or her own unique story; his or her own unique reason for reading what I write. In the last few days, I have had conversations with two different young moms who read what I write and in both cases, I saw something very raw and very real – I saw empathy and compassion. And I saw fear.

I’ve written a lot about my own fears. But I haven’t thought enough about the fear that I may be causing in others. I never, ever intended to do that. And I’m so dumb for only catching onto this now. Of course my story would scare the daylights out of any young mom, or anyone else for that matter. Maybe it's because there’s nothing to explain how this happened to me. I wish I could tell you that I used to add BPA drops to my cereal or that I drank milk from my own personal cow that I pumped with extra powerful hormones. Maybe my story would be less scary if I smoked or had a family history of cancer. If I did anything that could explain how I got this dreaded disease. But I didn’t. And that may be part of why my fear becomes yours. 

The fear I saw in the eyes of two friends made me want to hug them and tell them not to worry, that they will never get this. That my story is just what I have to bear, and they don't. But I have no idea who will get this and who won’t. As Bruce says, “Tomorrow never knows.” So all I can do is write to them that the empathy that I saw in their eyes that day speaks the world to me. It tells me that they have spent time imagining life in my shoes, and that tells me that they are deeply compassionate, good people. It tells me that they have people in their lives that they love more than anything else; that they could never bear to lose. And that tells me they are wonderfully blessed. 

I didn't express any of that to either of these two friends when I spoke to them last week. But I do think I squeaked out in some rambling way what I truly believe -- that they would handle it all just fine if they ever, Heaven forbid, needed to. Because they would. And they'd amaze me with their strength and grace, I'm sure.

It’s not easy to stand in someone else’s shoes, especially when those shoes are trudging down a rocky path. It’d be way easier if we never even bothered to try. But without empathy, we would live in solitude. And solitude would definitely be boring. And lonely. So as one of my favorite movie characters once said, “I’d rather feel too much than not at all.” Yes, that’s from Bandits. Funny movie, especially when it’s time to give my far-too-serious brain a little break.

Monday, October 29, 2012


Teddy is busy building a fort with every pillow and blanket in the house (see below). Annabel is stringing together little Thomas trains by their magnets, frustrated when the magnets reject each other, and learning that a quick flip of one will make them stick. Brian is vacuuming out Annabel's baseboards so that they stop clanging and waking her up in the middle of the night when the heat turns on. Every iPad, iPhone, and iMac in the house is fully charged and I dug the candle box out from the basement. Hopefully Sandy will spare us all, but Teddy got his Wii fix in this morning, just in case.

Last year as we braced for Hurricane Irene, I worried that a tree would fall on the house. One did fall, a big one, right between the house and Brian's shed. It was sad to see a beautiful healthy tree fall, but we were thankful that it fell in a perfect spot. This year, I still worry about the swaying trees, but I'm also thinking about chemo. 

My second treatment is scheduled for this Wednesday, Halloween. Annabel has a costume party in her classroom that morning, and since Brian will join me at Dana-Farber, we will both have to miss it. Sean will join Annabel and the other moms and dads at the party. At first, it made my heart ache to think that I'd miss her party for my infusion. But I have come around to being fine with it. I'll be there for our neighborhood party and trick-or-treating at night and Annabel is so lucky to have her Uncle Sean, and even others who would have backed up Sean if he couldn't make it. She will love his company and I will welcome my Allies once again, this time thinking about Annabel's beaming smile when she sees Un-coe Sean enter her classroom. 

As I've explained before, I haven't been great about following the news from my cancer cocoon. But since I heard about this hurricane, I've watched the weather closely. Because I don't want anything to get in the way of my appointments on Wednesday. I got so scared thinking that something could, because I really feel like I need those medicines. Oddly enough, I really feel like I need them because in the last few days, I have felt good. No nausea, no hot flashes, no heart burn, and even my embarrassing issues have cleared themselves up (thanks to Senokot-S). I've gotten used to my screwy taste buds and my tongue feeling like sandpaper. But as the symptoms have subsided, a crazy thing has happened. I've started to miss them. 

I remember a similar thing happened when I was pregnant -- when I didn't feel well, I wished that I would. Then when I felt better, I worried that something went wrong. At least when I didn't feel well, I knew I was still pregnant. 

Now, as my chemo symptoms have improved, I worry that the medicine has finished its job. I worry that the cancer could be regrouping. I'm almost certain the chemo drugs are not addicting, but in the way, they kind of are for me. Because now I want more of them. To be sure that the cancer is dead and if it's not all dead yet, to give it no chance to multiply. 

It looks like the storm will pass through by tomorrow and my appointments first thing Wednesday morning will stay on schedule. Given that Dana-Farber is in Boston, they've obviously dealt with bad weather before and I'm guessing that a few days of delay on the chemo wouldn't be a big deal anyways. But still, I like schedules and staying on track. I like to think I'm in control of this thing.

I've heard power in our area is starting to go out, so I better hit "Publish" before I lose this entry. Then I better go think of things to do with my kids that don't involve electricity. Yikes. That should be interesting. Especially since my go-to distraction when they get really crazy is a TV show or the iPad. Plus, if we lose power for long enough to drain my laptop battery, my therapy will have to turn from a keyboard to a pen and paper. If that happens, at least I'll be guaranteed access to power on Wednesday from an infusion suite at Dana-Farber. 

I thought I'd sign off with this quote that I found on A Word A Day a few weeks ago. It reminds me that I should be able to think of something to do as Sandy passes through. Even if I can't use anything that starts with an "i". 

Millions long for immortality who do not know what to do with themselves on a rainy Sunday afternoon.  -- Susan Ertz, author (1894-1985) 

Teddy's "hurricane fort." Aptly named, since it kind of makes it look like a hurricane hit. 

Saturday, October 27, 2012

Team Canton

A few weeks ago, Brian showed me a video made recently at my alma mater, Canton High School. I watched it in pure delight (and you can too by clicking here). Created by some incredibly talented students (including director, Daniel Sheehy) and one of Canton’s most dedicated teachers, Ed McDonough, this video has stirred up lots of great energy in my town, and rightfully so. It screams, or rather, it sings, of teamwork and school spirit, and I know I’m not the only CHS graduate who watched it (and watched it again) overflowing with bulldog pride.

Now that I think about it, it’s amazing how much of my life has been connected to Canton High School. Not only did I love my four years there as a student, but after I graduated from college, I returned to CHS to teach social studies, and I did so for five wonderful years. Anyone who has read this blog before certainly knows how much I loved my very first job. But while I was loving life as a teacher, Brian was not as lucky. After college, he took a consulting job. He was great at it, but when I went to visit him for lunch on a Jewish holiday that I had off from school, I knew that something wasn’t right. As we sat at a picnic table outside of his huge office complex in Waltham, I saw that he wasn’t where he was meant to be. We laughed about it, but it was kind of sad. Brian’s not a complainer so he hadn’t said much, but it was clear that he was lost there. His heart just wasn’t in the business world.

In 2003, the junior varsity boys hockey coach position opened up at CHS and I threw the idea out to Brian that he should apply. He said there was no way he could make it work with his job in Waltham. I disagreed, and Brian kept an open mind. Eventually, we crafted a plan that he took to his boss. He would leave Waltham for hockey practice in Canton then after practice he would drive back to Waltham to stay late and make up for the time he was away. Shockingly, his boss agreed, and Brian accepted his first coaching job. I think he spent more money on gas that year than he made coaching but it didn’t matter. When I went to his JV games, I saw what was missing outside that Waltham office park. I saw a fire in his eyes. And it was meant to be.

Since then, Canton High School hockey has been a huge part of our lives. We have met so many wonderful people through the sport, from players to parents to fans to the recreation department guys who groom the rink. Now, hockey season is also Teddy’s favorite time of year. He loves nothing more than lining up outside of the locker room and pounding his fist with the kids’ gloves as they take the ice after each period. I’m sure Annabel will line up beside him this season and pump her little fist against their smelly gloves. I can't wait.

* * * 

A few weeks ago, I took Teddy into visit Brian in his classroom at another high school dear to our hearts, Westwood High School. One of Brian’s colleagues, Linda, came down to visit. Since I was diagnosed, Linda had become a legend in my mind. She battled back from Stage 3B breast cancer and dealt with a grueling treatment regimen, far worse than mine. She has been to hell and back, and even though I had never met her, she inspired me every day since I learned about her back in August.

That day at Westwood High, Linda and I stood in the quiet hallway and talked about family and boobs and chemo and all of the fun things that come with it. It felt so good to talk to someone who knew how uncomfortable my mouth felt and how scary it was to stare down this enemy. Linda said many things to me that day that I recall often, including this. As we were talking about all of the good that comes out of this dreaded disease, Linda said, We’re so lucky – we basically get to live through our own funeral. People tell you what you mean to them; they tell you how much they care. I spent way too much time in the first few weeks after my diagnosis thinking about my own funeral, and it wasn’t a good thing. But I was thinking about all the wrong parts. Because Linda was right – it is unbelievable to see all of the people that care.

Still, funerals are sad. So here’s how I’d describe the indescribable silver lining that comes with this disease. I’d describe it by the Lip Dub video.

It all hit me today as I sat on a yoga mat doing yoga for the second time in my life (I think I tried it once before many years ago, but I can’t even remember when and where – I just remember that it was way too hard, I hated that I felt so inflexible, and I quit really early). But this was a whole different experience. Forget quitting early. I wished it would never end, and I’ve vowed to learn more.

As I sat there on my mat (admittedly disobeying the instruction to close my eyes), I looked around. It was as if I was walking through a Lip Dub video of my life. Special people from almost every stage of my 32 years were there, focusing on their breathing and their yoga pose. I won’t even try to name all of you, but I hope you know who you are. Friends with whom I went to elementary school, parents of students I tutored, former students I taught at CHS, my colleagues from Ropes, class of ’98 and other high school friends, former basketball and swimming and softball teammates, former coaches, relatives of Brian’s hockey players, friends from First Parish (my church), Bowdoin buddies and their fabulous spouses, Westwood High School friends, Brianne and her family, and of course, my family (and regrettably, I'm sure I'm still missing people). Michelle, who couldn’t have done a better job leading the yoga class today, is the older sister of one of my very first and longest-lasting friends in Canton, Kara, and I remember Michelle babysitting me and my siblings when we were in elementary school. These people shaped my life, and I fought back the tears of utter appreciation as I sat there surrounded by all of them. Then I did yoga, and it was awesome. Just over six weeks ago, I had my breasts removed and replaced. And there I was, able to stretch and lunge and squat. My goodness, it felt good, even if I still need to build up my upper body strength and flexibility to attempt the downward dog.

I’m guessing that many students who stood in the hallways of that Lip Dub video don’t yet fully understand the goodness and the strength and the energy of this town. In some ways, I hope they never know, because oftentimes it takes a tragedy or a serious illness to see it, and I certainly don’t wish that upon anyone. But I do hope that they take comfort in knowing that if they ever need it, those people who line the hallways next to them will come to their rescue. Just like they came to mine.

Last night, I talked about silver linings. Here’s one more. Kara and Brianne joined the incredible team from the We Beat Cancer organization to put together today’s event for me and my family. And part of that group was another CHS classmate of mine, Kate. Kate and I knew each other in high school but we weren’t really close. We were involved in different sports and our paths never crossed enough. I have only seen Kate a few times since we graduated from high school. It would make sense for Kate to do what she did for a close friend. But not necessarily for me. Nonetheless, she took a leading role in planning this event for my benefit. I can only hope that I would have done the same if the roles were reversed, but I worry that I wouldn’t have been so good. I will be forever grateful to Kate, Kara, Michelle, We Beat Cancer, Brianne, and everyone else who organized my very own Lip Dub video today. Who filled the gym with people from all stages of my life and made my heart sing and dance.

If you’re a student at CHS today, I don’t mean to lecture you with this last paragraph. I know I’m not a teacher anymore. But I just want to tell you something that I’ve recently learned. That Lip Dub video isn’t just a video that gave you a reason to miss a class or two. And Canton High School isn’t just a place you’ll spend four years. It’s so much more than that. Because standing next to you in that video or in another hallway a few choruses away are people like Kate and Kara, who you may not see for years, but who would nonetheless help lift you up if you ever fell down. Because that person a few bleachers over at the rally is someone who would care, and even weep, if something ever happened to you. This town is a special place full of best friends, old friends, new friends, and future friends. And in the end, there’s nothing better than gathering in a gym with those people and just being. All. Together.

* * * 

Photos finally added below. Yet again, words could never express my thanks.

Friday, October 26, 2012

Silver Lining

I have posted these lyrics before but in joyous anticipation of seeing so many friends tomorrow morning, I wanted to post them one more time. They are from the John Mayer song, "The Heart of Life."

You know, it's nothing new
Bad news never had good timing
Then, circle of your friends
Will defend the silver lining

My cancer cloud has had a silver lining like I couldn't ever begin to explain thanks to the circle of my friends and family who defended it when I didn't have the strength to, and who continue to defend it with me now that I do. I can't wait to see some of that circle for yoga tomorrow! 

Thursday, October 25, 2012


Back in August, Brianne bought me the famous yellow Livestrong bracelet, as well as a Livestrong sweatshirt and several t-shirts (including my favorite Battle Mode shirt that I wore to Faulkner for my surgery and to Dana-Farber for my first day of chemo). I have worn all of my Livestrong gear with pride since then. In fact, I didn’t take the bracelet off except on the day of my surgery. Until this week.

From my cancer cocoon, I admit that I haven’t been great at following the news. But still, I have heard bits and pieces of the never-ending saga with Lance Armstrong and doping. This week, I heard that he stepped down as Chairman of the Livestrong Foundation and that Nike, whose symbol covers lots of Livestrong gear, ended its relationship with him. When I heard that, I thought that the bracelet had way too much of a mess attached to it. I don't know all of the details about the doping scandal, but I was mad at Lance Armstrong for what I did know. Sure, his cancer survival story was still very inspiring, but it was just too tainted, and I wanted a bit of distance between myself and my Livestrong bracelet. So I took it off and put it in my jewelry box. But right away, I really missed it.

Then yesterday I read a recent article by Bill Saporito published in Time magazine (linked here). The following paragraph changed my thinking:

Livestrong is about hope. And as anyone who has ever been given that terrible diagnosis knows, people who have cancer need to have hope. Desperately. For me, the yellow band symbolized it in ways I couldn’t quite fathom, but the attraction was instant. It connected me to the more than one million Americans who would get cancer that year, and every year since. …

I admit that at this point in my journey, I'm not looking to be connected to a large cancer community. I love the community I have now and it never feels like I have enough time with those friends and family. But I know exactly what Mr. Saporito, himself a cancer survivor, was talking about when he talked about hope. Especially with that word, “desperately.” When I put that Livestrong bracelet on for the first time, it was at a point in my life when I desperately needed hope. It was at a time when I knew that my cancer was aggressive, but I didn’t know how far it had spread. When I thought that I might be too sick to enjoy my kids’ next few birthdays, and that I may not even see the ones after that. "Desperately needing hope" was an understatement. Many moments during that time, I just tried to breathe and eat and stand up straight. But somehow, that little yellow bracelet helped. Those two words helped.

Live. Strong. Those words helped me arrive at the mantra that I still repeat every day, especially in those moments when I feel completely overwhelmed by fear and uncertainty – I am here now. Live. They helped me last Sunday when I was hunched over the kitchen sink praying for my nose to stop bleeding. Strong. In those moments, I’m not thinking about Lance Armstrong. I’m not thinking about any cycling titles or doping allegations. I’m thinking about the fact that at that moment, I am very alive. At that moment, I'm flexing every hope muscle I have to try to be strong.

After I read that Time magazine article, I went back upstairs and put my bracelet back on my wrist. And since then, I’ve thought a lot about it. Here’s what I’ve decided.

So many of us wear symbols on our bodies, our clothes, our bags, or whatever. We think we know what other people's symbols mean, but so often, we don't. Does that pink ribbon mean she's a survivor? Does it mean she lost her mother to breast cancer? Does that green number 5 bracelet mean that kid thinks about Scotty as much as I do? Does that yellow ribbon mean her husband is serving abroad? Does that Livestrong bracelet mean he has cancer? Most of the time, I have no idea. But I constantly fight the urge to boil down those symbols to something simple. I constantly have to remind myself that in reality, each one of those symbols tells a long and complex story unique to each person who is wearing it.

My Livestrong bracelet is not about Lance Armstrong. In fact, it's not even just about cancer. For me, that yellow bracelet is about people who stand up in the face of adversity and decide nothing’s going to keep them down. Sometimes those people are athletes, but for me, a lot of the time, they're not.

I put my Livestrong bracelet back on for people like Brendan Burke. I never even had the pleasure of meeting Brendan, and Brendan did not have cancer. But years after his tragic death, Brendan continues to inspire me. I met Brendan's older sister, Katie, when we were in high school and we have remained friends ever since. Katie sat with me for hours one August afternoon shortly following my diagnosis. For most of the time, we caught up about brainless fun stuff. But we also talked about Brendan and cancer and fear and pain. 

I would be a fool to try to sum up Brendan’s life here because there’s no way I could do it justice. A few articles, including this one by ESPN journalist John Buccigross start to scratch the surface of this incredible young man, but I think it’s probably impossible (especially for someone outside of his family) to give Brendan’s courage and strength its due. Brendan lived strong, and after his passing, his legacy and his remarkable family continue to live strong. Brendan left this world a better place in so many ways, including by being the first to stand up in the hockey community and say he was gay. Katie supported Brendan from the day he was born and when I first met her, we bonded over how much we loved our siblings. I don't know how I'd go on if I lost my brother. But Katie does, and she does so with grace and kindness like no other. Katie lives strong.  So I wear my bracelet for Katie and for Brendan.

I wear my bracelet for these nine students who lived strong by risking their lives so that black and white students could sit side by side in a classroom.

And I wear my bracelet for women like Gabby Giffords who literally fought for her life when news stations had already announced her death; who encouraged her husband to follow his dreams back into space despite that she was still recovering from a gunshot wound to the head.

It's easy to get selfish in my cancer cocoon. To start to think that the universe revolves around my battle. When that happens, my Livestrong bracelet reminds me that the universe is much bigger than my individual fight. It reminds me of my friend and her brother who changed the lives of athletes and fans everywhere by saying that gay people can play too. It reminds me of people in history who brought about great change by walking into a school or refusing to get up from a seat on the bus. It reminds me of people who fight for their lives even when others already thought of them as dead.  These people live strong and they inspire me to try to do the same. They are why I wear my yellow bracelet.  

Wednesday, October 24, 2012

Meeting Maggie

Early in the evening on the night of August 8, 2012, I called a friend of mine to tell her what the radiologist told me – that I had breast cancer. The only people outside of my family that knew at that point were Brianne, Seamus, and Mark and I wasn’t ready to tell anyone else until we had the official biopsy results. But for some reason, I wanted to call Sara and talk to her.

Sara and I met back in 2006 at the wedding of a mutual friend. I’ll never forget when her now husband and our Bowdoin friend, Mike, introduced me to her as we waited for the shuttle to pick us up from the ceremony and take us to the reception. Somehow, we got on the topic of Sara’s brother who was bravely battling leukemia (recently, his doctors told him he is cured -- hallelujah!). I remember immediately thinking about how amazing Sara's brother must be to battle that enemy, and how strong Sara and her family must be to be able to function and provide support while someone they loved so dearly fought for his life. And I remember thinking, I need to become friends with this girl. Luckily, I did.

Sara is the mother of two beautiful kids and an oncology nurse in Boston. She is also one of the most caring people I’ve ever met. I don’t even know what I said to her that terrible night although I remember precisely where I was sitting (our porch) and what I was staring at (the wood floor planks) when I said it. And I remember how Sara responded when I told her. Oh my goodness, my friend Maggie is going through the same thing.

Sara told me that Maggie gradated from Bowdoin four years after I did. That makes her 28 years old. She married her Bowdoin boyfriend, just like I did, too. Sara went on to tell me about Maggie’s diagnosis and treatment. She said she could put me in touch with Maggie and I said that would be great. But at the time I was just trying to be nice. I knew I wasn’t ready to talk to anyone who was also dealing with this nightmare. I could barely comprehend my own living hell.

A few weeks before my first chemo appointment, Sara sent both Maggie and I an email so that we could have each other’s contact information. Still, I wasn’t ready, and I didn’t do anything with the email. Neither did Maggie, so we continued to be little more than names on an email to each other.

* * * 

I was so tired the night after my first chemotherapy treatment that I wrote very little about it. I thought the photos told enough of the story for the time being. That was quite a day though and now, exactly two weeks and lots of strange side effects later, I have the time to reflect.

Driving into Dana-Farber on October 10th, I wasn’t scared. I was still so relieved to have gotten the green light the day before because a second week of delay would have been awful. OK, maybe deep down I was a little scared, but I had convinced myself that it would be better for everyone, including myself, if I held it together. As I wrote about in my post from the night before my first treatment, that day wasn’t about me anymore, and for all of those other fighters and will-be fighters out there, I wanted to be strong. And to my own delight and surprise, I was.

Like usual, however, I didn’t do it alone. My Mom, Brian, and Sean were there every step of the way. Brian held my left hand as the nurse inserted what felt like a pretty big IV needle into a vein in my right arm. The nurse explained that she couldn’t numb the area despite the size of the needle. Pain at the site of the IV would be the first indication that my body was responding badly to the chemo drugs, so they needed to preserve my ability to feel it.

Literally armed with the IV -- the entry gate for my Allies -- we then moved back up to the ninth floor of the Yawkey building (known affectionately as, “Yawkey 9”). As we waited in line to check back into the floor, I noticed two girls, or I guess I should say two women, a few patients behind us. I spotted them right away because they were about my age, and I rarely see that there. Whenever I am at Dana-Farber, I always feel like one of the youngest patients. I also spotted them because they were both gorgeous. Especially the woman with very short, post-chemo hair. I wondered about her story. And despite that very few people may believe this, I swear to you, I had a gut instinct that this woman was Maggie.

We sat down to wait for our appointment with Dr. Bunnell, and after the women checked in for their appointment, they sat down nearby. After they got up to go into the infusion suite, I told my Mom that for some reason, I thought that girl was the “Maggie” that Sara had told me about. I had absolutely no reason to think it – I didn’t know the first thing about what Maggie looked like. My Mom looked stunned as she said that she heard the name Maggie while they were sitting there. No way, I said as chills ran down my spine. It couldn't be. So I texted Sara. I asked her what Maggie looked like, and by Sara’s response, I thought this really could be her. Sara then texted Maggie to ask her if she was at Dana-Farber that day. She was.

Through our little triangle of text messages, Sara told me the number of the infusion space where Maggie sat. She told me Maggie wanted me to come visit. When it was time for me to go back to the infusion suite to be weighed and prepped, the nurse told me that Maggie asked for me to come by her room. You’ll be taking her chair when she’s done, the nurse told me. Unreal, I thought to myself.

It also turns out that Maggie and I have, I mean, had, the same type of "triple positive" cancer and we are receiving the same drug regimen. Maggie is done with her chemo and is now onto the Herceptin-only infusion that I too will continue every three weeks for a year once my chemo is done.

Maggie and I only met that one time and we have exchanged a few emails since then. Despite that I barely know her, I’m confident about going out on a limb to say that this woman is someone special. Sitting in that chair, she glowed. In the first few minutes we met, I felt like I’d known her for years. We talked about our cancer and our treatment, but we didn’t dwell on it. We also talked about the nurse practitioner exam that she was studying for and would take the week after (she passed!). We talked about my kids. We joked about boobs and baldness and she told me she would bring me all of the headscarves she used to wear. And when we realized that we’re on the same three-week infusion cycle, we were elated. This wouldn’t be the only time we would bump into each other on Yawkey 9, and we made a date to meet up on Halloween and on the day before Thanksgiving (assuming we both stay on track, which now I so desperately hope I do).

When Maggie was done, I watched the nurse unhook her life-saving Allies. And like I thought years ago about Sara, I thought to myself, I need to become friends with this girl. After the nurses cleaned the room, I took Maggie’s chair to receive my own Allies. I still can’t even believe that’s a true story, but really, it is.

I don’t think Maggie could ever know what seeing her in that chair did for me that day. She’s so modest, she’d probably say she did nothing. But that couldn’t be further from the truth. Maggie was my guiding light that day, and I'm guessing will continue to be as I move through my treatment. Because of her strength, I was strong. Because of her smile, I smiled too. No doubt Maggie put so much good karma in that infusion chair, that anyone who occupied it next would have benefitted. I was so blessed to be that person, and I hope I left the same good karma for whoever came after me. 

Since then, Maggie and I became "Facebook friends." As I told Maggie, I'm not much of a Facebook stalker and I have never thought to visit someone's "page" when I became "friends" with them. But I was so curious about Maggie that I did think to find her "Photos" section and click through it. (I even saw that we both named our wedding tables after places on the Bowdoin campus. Seriously!?!) And as I also told Maggie, I teared up as I clicked through her photos. Because Maggie is stunningly beautiful, and she was even more so when she was bald than when she had long dirty blond hair. Those photos showed Maggie loving life through her treatment -- dancing at weddings, hanging out at backyard barbecues, laughing while friends kissed her hairless head. The photos also showed when Maggie's hair started to come back. I cried because those photos told a story of such resilience. And even though Maggie's hair changed as I clicked on, her eyes and her smile never did. In fact, I think they got even brighter.  

I marveled at Maggie's grace and her humor that day at Dana-Farber and in all of her emails since. I am inspired by how she powered through her nurse practitioner program during her treatment, by how friendly she had become with her infusion nurse, and by her positive energy and her optimism. Seeing her in that chair, I just knew that everything was going to be fine. For both of us. 

Monday, October 22, 2012


One of my most favorite lessons when I taught World History went like this (I admit up front, I found this idea in a book – I only wish I was this creative!):

When the students settled down, I would tell them that before we got started on the day's lesson, I wanted to have a brief discussion about a new grading system that I was seriously considering implementing in my classroom. I wanted some quick feedback from them, then we'd get onto the day's business. Here’s how the new system would work: after every test, I would take all of the individual grades and average them. Every student would receive the average grade as his or her final grade, essentially eliminating individual grades and replacing them with a single group grade. The kids would immediately react, and I would say, "OK, OK, if you want to talk more about this, let me just write some of this down." I would make two columns on the board -- Advantages and Disadvantages of the new system -- and we would brainstorm answers for the columns. Sometimes I felt badly that I was tricking them and I even got nervous about my acting skills. Ultimately, however, it was worth it because the conversation was beyond fascinating.

Usually the majority of the class hated the idea of the new grading system. There were always a few students (no surprise, usually the ones who got good grades) who led the charge against the system. I always had to be very careful that no one made any personal insults (e.g., “Billy will drag us all down!”) and luckily, I never remember it turning to that. But when the Advantages side looked much shorter than the other, I asked the class to really push themselves to consider this other side. Not that they had to believe it, but I wanted them to think about it.

At the time, I was an evening student at Suffolk Law School. Three nights a week, I would drive into Boston for class. I remember one night, shortly before I was planning to give this lesson, that I was stopped at a red night near Government Center. A homeless woman was standing on the side of the road begging for change in a coffee cup. She did not look well. And she was pregnant. When I needed to push the grading system conversation forward a bit, I described the sight of the pregnant homeless woman for my students. I asked them to think about that unborn baby. Would that baby have all of the opportunity, or food, or shelter that they did? Did that child deserve some help? When the child reached high school, would she deserve to be in a classroom with other students invested in helping her because those students' grades relied on her success? Did it matter that he didn’t have a place to do his homework because he was lucky if he even found a bed to sleep in? Did she deserve to be graded the same way as a fellow student whose parents could afford hours of private tutoring? I told my students that I was playing devil’s advocate and that I was not trying to convince them one way or the other. I was almost completely honest when I made that last claim. But my students probably knew me enough to know that in my heart, I felt for that unborn child, and unfortunately, the conversation didn’t usually have much of a debate flavor after that.

Finally, I would explain that we just debated the advantages and disadvantages of communism. I would note that we could have had the same discussion about restaurant wait staff pooling tips. Having worked as a waitress for years, both at places that pooled tips and places that did not, I knew that too would be a similarly fascinating conversation. Then I would assure the class that we would not be changing our grading system. A collective sigh usually fell over the class – always my proof that our children are raised capitalist at heart.

In a different time, or a different part of the world, I’d fear for my safety after posting about the lesson above. Even now, I worry that I could offend some people, and for the record, I do not support or promote communism. But I do love the debate that it conjures up. Because that debate makes us think about our values, and ultimately, our commitment to other people that we may not even know.

* * *

Yesterday afternoon, out of absolutely no where, I got a terrible nosebleed. Thank goodness, Teddy was visiting my parents at the time, having needed a change of scenery to a different sofa. (His foot was much better but we were trying to keep him off of it for one more day. Today he played over an hour of street hockey with the neighbors so I guess he’s fine. Relief.)

When Annabel saw the blood, she immediately went into the freezer and got me “Bumble Bee,” our little soft ice pack shaped like a bee that we use almost every other day for the kids when they bump themselves. “Mama boo boo,” she repeated over and over. I’m OK, baby girl, just a little boo boo on my nose.

Record that clip for my Oscar campaign because despite my light-hearted tone, I was terrified. The blood poured out, and then came what I thought for more than a second could have been part of my brain (yes, I’m joking, but what the heck was it?!?). Brian was scared too, and after consulting the trusty symptoms sheets, he said we needed to page Dr. Bunnell if it didn’t stop. When it was still gushing a few minutes later, we used the pager number for the first time. Even though it was a Sunday afternoon, I didn’t feel guilty. I was too scared for any other emotion.

Dr. Bunnell called back within three minutes. Seriously, that guy is amazing. He spent about fifteen minutes on the phone with me, asking me dozens of questions. While we were talking, the bleeding stopped. He told me everything would be fine but given the nosebleed and my answers to some of his questions (e.g., Yes, my gums bleed too...) I needed to come in in the morning to have my platelets checked. Dr. Bunnell wanted to be sure that my platelet count wasn't so low that my blood wouldn’t clot properly. He assured me that it was likely just fine, but like usual, he wasn't taking any chances.

Of course, my Mom rearranged her busy workday and drove me in to Dana-Farber first thing this morning. As always, Brian was so upset he couldn't come. But I knew if the results called for any follow-up, he'd be there right away. 

The lab was totally packed, even more than usual, and the waiting room felt like we were all anxious to board a 747 that was late to arrive to the gate. After over an hour, one of the many lab techs finally called “Tara S.” Once I got back to the lab, I waited another 20 minutes or so because the technicians’ handheld devices were not printing the vial labels properly, which was precisely what was holding everything up. The nurse was so apologetic about the long wait, and I assured her that I didn't mind at all. I really didn't. My Mom and I were having a fine time chatting in the waiting room (and joking about the mob scene), and plus, I didn’t really have anywhere else I needed to be (except home watching the second episode of Homeland, Season One…I watched the pilot last night and Wow, it was good).

Very soon after the nurse drew my platelets on the second floor of the Yawkey building, I was called into an exam room up on ninth floor (the breast oncology floor). Danielle, Dr. Bunnell’s wonderful PA, came in to see me not long after that. She told me my platelets were fine. I was so relieved. She went on to explain some of the science behind it and by her tone, I started to think there was bad news coming. I had to interrupt and ask, “So is there a ‘but’ coming here?” “No,” she laughed, and I encouraged her to continue. But to be honest, I was too distracted by my feeling of relief to listen much more. 

I learned over these last few days that platelet transfusions and blood transfusions are not all that rare for chemo patients whose blood counts get too low. I’ve thought a lot about this and mentally prepared myself for one. And in that process, I came back to that discussion I had with my classes years ago.

As my Mom and I drove in today, I asked her if they could give me the blood of someone I know if I needed a transfusion. I was so weird-ed out by the idea of getting the blood of a perfect stranger. I’m not at all scared that it’s infected or anything like that – I completely trust that it is not. It’s just that I thought it would be so weird to have a stranger’s blood running through my veins. I felt I’d be less of me and more of someone I didn't even know.

But as I thought about this more tonight, I have completely changed my mind. In the end, I don’t think receiving someone else's blood would be weird at all. I think it would absolutely incredible. Because it's amazing to think that a perfect stranger took time out of his or her day to donate blood, to give something that can’t be produced in a factory (at least I don’t think it can) to someone he or she will never meet. For nothing in return. (I've given blood a handful of times before, but never religiously like one of my good friends, David, who is a wonderfully dedicated donor.)

Then my mind wandered even more. It wandered onto organ donation. From the day I got my very first driver's license, I have been proud of the little “Organ Donor” stamp that it bears. I sure don't like to think about a tragic end, but I sure do like the idea that my decision to donate my organs could turn that tragedy into someone else's greatest triumph. I don’t mean this post to be a plea for others to get the same stamp, or an appeal for readers to donate blood. I know there are plenty of legitimate reasons why people choose not to do these things. Rather, I mean this as a huge Thank You to the people that can do it, choose to, and take the time to carry it out.

I always worked really hard so that I could get good grades. My parents gave me everything I needed, and more, to succeed. If I was presented with that new grading system back in high school, I probably would have had an internal panic attack (unless it was in Mr. Badoian’s class, in which case I would have welcomed it). No, cancer has not made me a communist. (For proof, the one time that we did not valet park at Dana-Farber (Brian’s idea, not mine), we drove through what had to be the physicians’ parking section. The cars were niiiii-ice. And Brian said it best – “They deserve every nice thing they have and more.” I agree completely.) 

Trust me, I want people to have huge incentives to discover cures for cancer and every other disease.  While I sincerely hope those incentives are driven by more than just money, I am fine with the reality that money helps motivate most of us, albeit to varying degrees. So while cancer has changed me, it has not turned me to communism. Cancer has, however, made me think more and more about the people who have or will donate all of the important things that I, and countless others, may now need. I know that people don’t donate blood or get that organ stamp ever knowing the name or the face or the family of the person whose life they may save one day. But trust me, those people are out there. And we are eternally grateful.

Sunday, October 21, 2012

Limps and Lumps

I felt my tumor for the first time on Friday August 3, 2012. That night, Brian had his annual Canton High School hockey alumni barbecue. One of Brian's fellow coaches, and one of his closest friends, Corey, came to our house for the event. Corey brought his adorable little two year old, Keegan. When I gave Corey a hug to welcome him, I asked him the first question I always ask him -- How's Kristin doing? Kristin is Corey's lovely wife, and one of our dear friends. Back in August, she was a few weeks into her chemotherapy treatment for her breast cancer, so we had been thinking of her often. Corey gave me a quick update and I realized it had been far too long since I'd seen Kristin. Over an hour later, we decided that Teddy and I would drive Keegan home so we could visit with Kristin and meet Keegan's new baby sister, Emma, one of the most beautiful babies I have ever seen. This way, Corey could spend some relaxing time with Brian and their former players and Kristin and I could have a few minutes to catch up.

I remember driving over to Kristin and Corey's house. Keegan was so adorable chatting in the back with Teddy. Up front, I listened and smiled, while I worried that it would be strange to see Kristin bald. I had not seen her that way yet. I hoped I could fake a positive reaction if in fact it made me really sad. I assume that's what some people are thinking about me now.

When I saw Kristin with her pink scarf on her head, it wasn't strange or sad at all. Without an ounce of make-up, she looked gorgeous. We chatted, and watched the boys play together. We talked about her treatment, and as she always does, she totally downplayed her own strength and courage. I tried to remind her how incredible she is, but she's too modest and humble to really see it.

Every Friday afternoon after wrapping up her kindergarten classes, Kristin drives into Dana-Farber for her chemo. She has four treatments left. I don't know how she does it all, especially with a two year old and a newborn, and with almost no other family in the immediate area. She is one of the strongest people I know. When I left Kristin and Corey's house on August 3, I remember feeling so thankful to call such a remarkable woman my friend, and every day since, I've felt the same way.

After the "hockey guys" (as Teddy calls them) left the alumni barbecue that night, Brian and I watched our Tivo-ed Olympics. And for the first time, I felt my breasts for cancer.

I felt the lump in my left breast almost immediately. It wasn't absolutely obvious, but what I felt in the left one I did not feel in the right. I asked Brian what he thought. He didn't like what he felt (insert joke about small saggy boobs) and told me I should make an appointment to have it checked out.

That Monday morning, I called my primary care physician (let's call her Dr. Thomas). Dr. Thomas was on vacation that week so I scheduled an appointment with another physician for that Friday. On Monday night, while again watching the Olympics, I sat there feeling the lump. I got more nervous, and so did Brian. So on Tuesday morning, I called the doctor again and asked for an appointment that afternoon. Brian came with me to my 2PM appointment, and that is the day I discussed in my very first blog entry. We left the doctor's office on Tuesday thinking I had a benign cyst. The next day, the radiologist told me he saw cancer.

I have always been somewhat of a hypochondriac, and a strange one at that. I usually assume the worst (for example, a headache must be a brain tumor), but I don't rush to the doctor with my symptoms. I just torture myself internally and usually, the symptoms subside. In the instances when they haven't, I reluctantly carved out a morning to visit Dr. Thomas. Inevitably, Dr. Thomas would be an hour late and then I would wait in the exam room for another half hour. My blood would be boiling by the time she came in to examine me, mostly because I would have missed the commuter train that I had planned to take to work. I'd already be irritable because I would have stayed up extra late the night before to get work done that I knew I wouldn't be able to do that morning. But I'd still be nice when she came in because I needed her help. (By the way, Dr. Bunnell usually keeps us waiting for a short time. I am completely forgiving of that, however, because he spends such quality time with me that I know he's late because he's probably doing the same with another patient. I can't say the same for Dr. Thomas, so I just get mad.)

Usually, Dr. Thomas attributed my condition to stress. I would try to tell her that I wasn't stressed. She would nod. It never felt very productive and we never really clicked. But I usually left feeling better that I got whatever it was checked out. If it was something serious, she would have found it, I would tell myself.

Last November, I had a yearly physical with Dr. Thomas. She did a breast exam. She never felt a tumor, and I am not implying that she should have. My cousin who is a physician said you can't feel a tumor less than 1 centimeter in diameter. Mine was 1.2 centimeters when Dr. Nakhlis removed it, so perhaps it wasn't big enough to feel last November. Still, it's unsettling.

In my first appointment with Dr. Bunnell, he mentioned that breast exams are no longer recommended. At the time, I didn't ask any questions. Brian, my Mom, and I talked about this on the way home that day. It didn't make any sense to us. At a later appointment, my Mom returned to the topic. How could breast exams not be recommended? Doesn't Tara's story prove they should be? In a nutshell, Dr. Bunnell explained that a study showed that breast exams don't increase survival rates. Instead, they cause women lots of anxiety and false alarms. Dr. Bunnell said that was his official answer. But he continued to explain that in his opinion, if a woman can do exams without causing herself anxiety, if she can become familiar with how her breasts feel so that she could notice any changes, then he thinks it's not a bad idea. When I told him that I found my tumor on my first self exam, he told me that was unbelievable. I just smiled, because no matter how unbelievable, I knew it was true. A miracle. And most of all, a life-saving gift from Kristin.

I sometimes think my hypochondria helped to save my life, too. But in a way, that's made it worse. Especially since the genetic counselor told us that I may carry a gene that could cause childhood cancers in my kids. Talk about unsettling. So yesterday morning when Teddy woke up unable to walk on his right foot, it's no surprise where my mind went. Inside, I was a wreck. Despite that we had planned to go to the rink for a skate-a-thon to support my fight, and that I was planning to visit with my fabulous neighbors before they headed out to the Susan G. Komen Race for a Cure wearing "Team Tara" shirts, we took the first urgent care appointment we could get.

At that appointment, we met the best pediatrician I have ever seen in action. For the first time, my kids both laughed in the exam room (they usually are screaming and crying before the doctor even enters). Dr. Midura told us that Teddy has Severs Disease. The word "disease" makes it sound a lot worse than it is. Essentially, it's bad heel pain in growing and very active kids. Motrin and rest should make the little guy feel better. It was so sad to see Teddy literally crawl and crab-walk around the house, unable to put any weight on his foot. But this morning, he walked slowly from his room to ours, and told us that it's feeling better. Thank goodness.

Yesterday I also decided to switch the kids' regular pediatrician to Dr. Midura. The kids' doctor was fine, but when I called him about a month ago to tell him about my diagnosis and to ask him to just keep it in the back of his mind, he could barely have a normal conversation. He couldn't even find it in himself to say, "I'm so sorry to hear that." It was awkward and I was not impressed. In a completely different experience, as we were getting Teddy's shoes back on at the appointment yesterday, I told Dr. Midura that I'm a bit paranoid lately. She looked me in the eye and said, "You don't have to say anymore." I knew she understood. She went on to talk about bone tumors and leukemia in kids and told me that if his pain doesn't subside, we should definitely bring him back. Despite using those words I dreaded most, she comforted me. And she even hugged me when we left. She was wonderful.

Now that I've seen firsthand how great doctors can be, I'm done with mediocre and awkward conversations. I'm going to find a new PCP for myself, and we're switching the kids to Dr. Midura. No more feeling guilty that I may hurt someone's feelings. I'm done with that too.

I felt so much better with Teddy's Severs diagnosis. Until dinner time. As Teddy ate his grilled cheese, we examined his foot again. And we noticed a faint layer of blue on it. My heart jumped to my throat. I grabbed the phone and ran up to our bedroom to place a call to the on-call doctor. I could barely breathe I was so nervous.

When I went back downstairs, Brian was sitting next to Teddy on the couch with a wet paper towel. He rubbed Teddy's foot and showed me the towel. It was blue. My heart returned to its place in my chest. We laughed, and looked across the living room floor to the hockey dry erase board and blue marker that Teddy had been using as he played with his Hockey Guys earlier in the day. I called the on-call line back again and cancelled my request. The woman laughed at me when I explained it was only marker. I'm a little paranoid lately, I explained. She had no idea why, but that's OK. Because all that really matters is our little ones are healthy. And so are we.

*  *  *

I am so hesitant to use this space as a way to thank people for their never-ending generosity because there is no way I could do everyone and every thing justice. Nonetheless, I want to thank everyone who skated, baked, walked, and supported us in so many ways yesterday. You are our angels and we are forever grateful. 

I loved these photos from the skate-a-thon and thought I would share.