Sunday, December 29, 2013

A Flash Mob (Part Two)

I wrote A Flash Mob (Part One) back in November and while I knew I'd write a Part Two, I never knew it would be this until tonight. 

On our first night in Disney World this past November, just a few hours after Brian graciously took the kids back to the hotel room to go to sleep, my family and I wandered around the resort settling ourselves into vacation mode. It was a beautiful night and this first night of vacation felt particularly special.

Earlier in the evening, we had seen a group of young men and women practicing a dance on the lawn and we stopped to watch. We figured it was some sort of dance competition and since I love myself a good dance number, I smiled through their whole routine, so jealous that I couldn't join them (they could, after all, actually dance).

Later that night, as we walked by a few of the women from the group, we stopped to ask them what they had been practicing for. We're generally not that chatty with strangers but it was, after all, Disney World. One of the women explained that a proposal was about to happen. She said that a young guy had arranged for a flash mob to propose to his girlfriend. The couple was supposed to arrive back from dinner any minute. Just as she said that, the couple came strolling down the well-landscaped path. My family and I carried on as if nothing was up but we were giddy with excitement and we're terrible actors.

The young man sat down on a bench with his soon to be fiancé and soon after, the music started. The flash mob began.

It was so cheesy and so darn cute. We immediately joked with Sean, who we figured would propose to Lauren sometime in the next year, that he was totally screwed. I mean seriously, the whole flash mob proposal thing? Pretty impressive. It brought us to tears, anyways.

On Christmas Eve, Sean proposed to Lauren in his own sweet and romantic way. Obviously it did not involve a flash mob. And she said yes.

*  *  *

A month or so ago, a friend of mine posted a quote on Facebook that stuck with me all through the holidays. It was something about how as we get older, the things we want for Christmas are things that can't be bought. Even though my reasons for loving that quote may be different than Jillian's, I couldn't agree more. Sure, I got (and gave) some pretty sweet gifts, but none of them would ever compare to something like getting an amazing sister-in-law, or having my whole family in one room on Christmas morning, or seeing my kids jump up and down screaming in delight, "Santa came! He came!" 

Disney World is a pretty magical place. I'm sure people sit in conference rooms every day cleverly creating that magic and I admit, I'm a total sucker for all of it. But the flash mob didn't come from a conference room. It was just a group of friends who were hired to dance during a marriage proposal. 

One of those friends, amazingly, also happened to be a cancer patient. She was young and bald and beautiful (and I'm not just saying that). Since a few of us were still wearing our "Beat Cancer. Go to Disney." shirts, after the dance was done, she and I got to chatting for a few minutes. She told me that she was in treatment for lymphoma. I told her how beautiful she looked, how I never wore a wig either, and how awesome it was that she was still dancing. 

*  *  *

When my whole family came over on Christmas Eve for dessert and to toast the newly engaged love birds, I was beyond giddy and grateful and just so darn happy for my little brother and his fiancé.

As we all sat around the table eating terrible versions of the delicious cookies that my grandmother used to make (I had no idea "shortening" meant butter), I also got hit hard by a few awful cancer waves. They came when I realized how badly I want to be at my brother's wedding.

Thankfully, without anyone even realizing it, and despite the inadequacies of my little peach pill, I was able to shake away the fear and pain that came with those waves. I didn't think or do anything noteworthy. I just knew that the gathering didn't need a party pooper.

Christmas (or, at least, the relatively non-religious one that me and my family celebrate) reminds me a bit of Disney World. There's definitely magic in the things we carefully plan -- the lights, the meals, the cookies, the songs, the piles of gifts. But there's way more magic in the things that can't be bought, like a young couple in love, or a family laughing at bad cookies, or a flash mob with a girl who looked a bit like I did a year ago. These are things that gave me a priceless gift this Christmas -- a clearer understanding of what it really means to "beat cancer."

Tuesday, December 24, 2013

Good Words: Love

Love is that condition in which the happiness of another person is essential to your own. 
~ Robert A. Heinlein, Stranger in a Strange Land

Merry Christmas and congratulations to my little brother and his new fiancé, two truly wonderful people who know just what Robert Heinlein is talking about. 

Wednesday, December 18, 2013

A Story About Love

Since the first night we brought Teddy and, three years later, Annabel, home from the hospital, Brian and I have tiptoed into the kids' rooms and kissed them goodnight on our way to bed. By that time, they would have been asleep for a few hours, and we would have forgiven (though not forgotten) the sitcom of a bedtime episode from earlier that evening -- the crying and the giggles, the whispering and yelling, questions and answers, requests and responses, commands and coercion. On the upside, the madness of bedtime makes the peace of a sleeping child all the more precious.

I know I'm not the only one who deals with the vortex that is young-kid bedtime and I know I'm not the only one who feels an overwhelming sense of love for my sleeping children when I finally kiss them goodnight. Alone in their crib or their bed, fast asleep in Batman pajamas or Red Sox t-shirts, and huddled among sentimental blankets and stuffed animals (and, in Teddy's case, signed baseballs, picture frames, and Brian's championship hockey ring) they look so innocent and so darn cute. I have often wanted to crawl into bed next to them and hug them all night long. Then I remember the few times I have slept in the same bed with my children and I remember that after a few kicks to my stomach, I regretted my decision to snuggle. So I don't crawl in beside them; I just kiss them, and hold their hand or rub their back and whisper to them how much I love them and how proud I am of them.

On a completely different note, have I mentioned before how much I f%*#ing hate cancer? Well, I do. Tonight I hate it because it is a terrible thief in ways that people close to it often don't even mention. For instance, it's time that I admit that cancer has stolen from me many of those kisses that I used to give Teddy and Annabel before I went to sleep. I'm not proud that I was robbed this way, but I'm ready to confess that I was.

For some context, tonight's confession was inspired by two photographs I saw earlier this week while scrolling through Facebook.

Melanie Tracy Pace / Loft3 Photography
When I saw these side-by-side photos (more linked HERE), I immediately knew that cancer was lurking in the background. I knew that the brutal disease was to blame for the feeling of loss and fear that seemed to reach out from the screen and suffocate me. And so the first few times I saw the images, I rushed past them, never clicking or reading or commenting, and trying so very hard to find a frictionless part of my brain.

There was, however, no avoiding these images. They are incredible, and they deserved to be found, and so people found them and shared them; and shared them some more. As I rushed past the images, I once again realized that I am long past the days of being able to hide in my cancer cocoon. Still, I just wanted to curl up and cry.

Last December, my New Years resolution was not a popular one among my family members. Yes, it was a bit dark, but I was serious about it then and I've been serious about it ever since. I thought back to that resolution today when I thought more about these images and about kissing my kids goodnight.

My resolution was based on this quote:

If, every day, I dare to remember that I am here on loan, that this house, this hillside, these minutes are all leased to me, not given, I will never despair. Despair is for those who expect to live forever. I no longer do.
~ Erica Jong, writer

Almost one year and 166 published blog posts ago, I wrote:

This year, I will dare to remember that I am here on loan, that this house, this hillside, are leased to me. This year, I will not expect to live forever and I'll try to feel less despair in the fact that I won't. I'll try to remember that my minutes are only temporary so I better put them to good use.

In some ways, I've done OK on my resolution, even perhaps, in the "A" range. But in other ways, I'm hovering around a D+. Kissing the kids goodnight is one such place.

Many times this past year, I have purposely passed by my kids' rooms at night. I've neglected to give them one last kiss because I couldn't bear the indescribably awful feeling I'd get in my heart and in my stomach when my overwhelming love for them morphed into cancer fear. So I skipped the trip altogether. Less love, less pain. That was essentially my split-second rationalization.

*  *  *

This morning, as I waited on the train platform, I once again bumped into the photos. I almost lost it then and there. Why were these images so powerful? How could a simple glance at them -- a bride, a groom, a child, a father -- crush me so? I didn't end up crying amidst the Orange Line crowd (there's enough weird stuff going on there). I did, however, decide that I was so upset I may as well click into the link to confirm what I knew was true -- that stupid f$*&ing cancer left this little girl without her mother and this husband without his wife.

The first line told me. Cancer. 31. F*$%. I couldn't read any more. 

I boarded the train in a daze. From Back Bay to State Street, I stood sandwiched between a businessman and a guy who smelled like pot. I don't remember hearing any sounds; I was deep in thought about what I needed to write down about what I had seen and what I was feeling.

By the time I arrived at my office, I had a whole blog planned -- mostly about how hard it is to stay positive when there's such tragedy all around. I planned to write about stubbornness and about how everybody shows up to work or to school or to their own front hallway in so many different states of mind. I didn't get to write it down, but I figured I would do so on the ride home. Don't think about it until then, I told myself.

Well, we all know how "Just don't think about it," goes for me -- it doesn't. I couldn't stop thinking about the family and a few hours later, I found myself back at the images. I needed to know more.

I clicked back into the article and this time, I read beyond the first line. OK, maybe I only had the guts to skim, but still, I skimmed, and once I reached this part, I stopped and read it and reread it.

When he wrote about the experience, Ben said, “Many people have asked me how I felt while doing that photo session. What I want them to know is that this isn’t a story about grief and loss and hurt. Yes, I’ve gone through those emotions and still do but that’s not what I want people to see in these photos. This is a story about love.”

And that's when I arrived back to the nights since my diagnosis that I haven't been able to kiss my sleeping kids goodnight; those nights when I've been so in love with them that I couldn't even stand beside their beds and look at them. I tried to rationalize that it wasn't a big deal, me not going in there; that Brian still went in, that the kids were asleep anyways. But every night that I decided to pass by their open doors and white noise, I knew that cancer had taken something from me.

The photos, as awesome as they are, haven't lead me to any great epiphany. Strength and courage and progress are rarely, if ever, made in any one huge leap. But I do think that the last sentence of that passage taught me something that I needed to know, or at least, to be reminded of.

These photos reminded me that love can be bright and happy and clean, like a bride and groom, or a new house, or a baby girl. Love can also be so strong that it has no other place to go except into a fear that one day, it all could end.

This is where Ben's message becomes so powerful. Obviously his wife can't stand there in the family photo or kiss her daughter goodnight. Cancer destroyed all that. But cancer didn't destroy the love that Ben and his daughter have for their mother. Cancer didn't destroy their strength to stand where she stood and do the things that she did. In fact, cancer only strengthened those things.

Don't get me wrong, I am most certainly not thanking cancer for anything or giving it any credit it does not deserve. And I would never argue that people should (or could) welcome or embrace grief as a comfortable form of love. I just happen to really like Ben's simple message -- that he has experienced grief and loss and hurt, but nevertheless, these photos are a story about love. Ben reminds me of my resolution -- of the reality that I won't always be able to kiss my kids goodnight, and I don't mean because cancer will permanently rob me of that. Rather, my kids will grow up. My time to adore them as my little ones is limited, not necessarily by my cancer, but rather, by the lease that is life.

I admit, it's really (really) hard to see these images, just like since August of 2012, it's been really hard to kiss my sleeping kids goodnight. Thanks, however, to the strength of people like Ben, I'll try my best to take back part of what has been stolen from me; to remember that the frightful feeling of potential loss is born by the reality that I have been blessed with an awesome role in a very precious story about love. 

Tuesday, December 17, 2013

Caution: Falling Ice

My family says I have a revisionist memory. They say that I take times of my life that weren't very good and I remember them as if they were great. I admit, I sometimes do that. But in at least one case, I've also done the opposite -- I've taken a part my life that, in real time, I hadn't consciously recognized as awful and I've come to realize that it was, actually, kind of shitty. That time involved my commute to work.

I never consciously declared that I hated that commute but for a variety of reasons, I did. Those reasons ranged from the gate at the train station parking lot that often malfunctioned, to the fact that those two hours commuting were always my most anxious hours of the day. During that time, I'd often find myself worrying or making mental lists that felt too big to tackle. I'd worry about many things -- terrorism, one of my kids choking on their lunch, falling icicles off office buildings. I looked calm on the outside, and I could even laugh about my nuttiness, but inside, a river of worry flowed through my veins. (Note: one exception -- when my mom picked me up and we commuted home together -- I always loved those rides.)

When I think about the route that I walked, or better yet, ran, from my old office to the train, I want to be sick. Looking back, I can see the tourists and their shopping bags obliviously blocking the way. I can feel my legs burn from taking the stairs two at a time and I can feel my shoulder ache as I held bags of laptops and binders and more binders. I can hear the ding of a new email, likely with another task that needed to be done in short order.

When I made it in time for the train, the adrenaline was pumping so I felt good. But by the time I reached my seat, the anxiety would set in again -- that feeling of being overwhelmed by all I had to accomplish that night, from making the kids lunches to researching a topic I knew nothing about. Countless times I thought to myself, I waste two hours of my life every single day on this stupid commute. And I hate to waste time.

Switching jobs to a firm where I didn't feel like I was breaking out of prison when I left at 5:30pm helped cure a lot of the commuting anxiety. If I missed my train to work, I would just catch the next one and I knew everything would be OK. I found an incredible morning babysitter and started to park in a lot without a malfunctioning gate. Still, I'm wired with good ole God-given anxiety so it never disappeared altogether.

Enter the Little Peach Pill. The Little Peach Pill has become a regular character in this space. As I've explained before, its real name is Effexor and while my oncologist prescribed it to me for anxiety, I have since learned that it’s considered an anti-depressant. Whatever it is, it works. Or better yet, it worked.

The best way I can describe what the Little Peach Pill did for me is to say that it made my brain relatively frictionless. I was still me, so I’d still worry about a plane flying into my office building, but instead of feeling real anxiety about it, the thought would just glide through my brain, as if it effortlessly exited out one of my ears.

The Little Peach Pill helped me a lot. Thoughts of terrorism and school shootings and natural disasters passed in and out and didn't get stuck like they had before. The Little Peach Pill was my friend, helping me find peace at 70%, and most of all, helping me not dwell on each and every pain or unexplained feeling as if it was a recurrence of cancer. But then, a few weeks ago, the Effexor stopped working. Clinically speaking, I'm convinced that it "pooped-out."

I have since learned that Effexor, as well other anti-depressants, can just stop working for reasons that a doctor can't precisely identify. No joke; doctors actually call this the "poop-out effect!" I know that some very reasonable people won’t understand this because even my own husband -- a very reasonable person -- doesn’t get it. But I also know that it’s true. In the last few weeks, my Little Peach Pill became nothing more than a placebo, a co-pay, an extra gulp of water in the morning. The friction returned to my brain and thoughts that had once flowed out of my ears got stuck inside again; like an air hockey puck that can't find the net.

As I wrote about last week, the pain in my neck has been the worst of my worries. I was convinced I felt it. It. A recurrence. The dreaded beginning of the end. It was scary; so very scary that one night last week, I couldn’t stop crying. Poor Brian had no idea what to do or what to say, probably because he likely thought I was long past this sort of a meltdown. But he could tell I was upset, really upset, so he dug out the orange bottle of Ativan, handed me one, and let me cry. Then, he fell asleep. 

A few years ago, I would have been so mad at Brian for falling asleep while I cried all over my pillow. But I've changed that way. The newer me actually thought it was funny (the next morning, of course). Because it was -- the yin and the yang of the two of us. Plus, I felt relieved for the guy -- at least he can turn his brain off. And that's what made me jealous; really, really jealous because Brian, like so many others who don’t have first hand experience with anxiety, can't fully understand what it’s like to have a brain full of so much friction that it just can’t let some thoughts go. These normal folk say things like, “Just don’t think about it.” Seriously now, I love the man, but when Brian says that to me, I want to throw something at his head and scream, “You think I want to think about nuclear attacks and a drunk driver jumping the curb in broad daylight?! Really, I don't!”

I felt a strange sort of loss when I started to realize that my medicine wasn’t working anymore. I also felt that most familiar of feelings -- fright. If my body could adapt to Effexor, does that mean it could also adapt to Herceptin? If my brain cells could eventually overpower the anxiety medication, would the HER2 protein win out over the cancer drugs? The stupid air hockey pucks that wouldn't fall out of my ears frustrated me. They frustrated me mostly because I felt like I was moving backwards.

On my walk to South Station from work yesterday, I walked by at least six different signs that read, “Caution Falling Ice.” After the second one, I immediately had the urge to write. I itched to think more about those signs; to put down on my computer screen why they fascinate me; and why lately, I've felt like there's an icicle dripping vengefully above my head.

As a “cancer survivor,” I feel like I am constantly walking by signs that warn me about falling ice. Should I look up to try to elude the dagger of frozen water? Probably not, as an icicle in the eyeball would certainly be worse than one on the top of my head. Should I walk faster? But the faster pace could lead me to the plummeting icicle that I otherwise wouldn’t have reached had I kept my regular pace. Should I cross the street? No; there’s falling ice over there, too. Plus, I don’t want to let my fear rule me. So I just keep walking and hope for the best. Then I wonder if it would just be better if the signs weren't there at all. If there's nothing I can do about the ice, how exactly do I use caution? And if I'm not cautious, am I foolish, or am I, in fact, enlightened? 

I drafted this post on the train ride home last night, crowded between other passengers with puffy winter coats. During those 30 minutes, I felt an awesome sense of victory, or maybe, even, a tinge of enlightenment.

I'm starting to accept that my Little Peach Pill, the one I was so hesitant to welcome into the cast, may need to be written off of this show. Maybe I'll talk to my doctors about a different medicine or a different dose, but I'm not there yet. Not even close.

Nevertheless, last night's feeling of victory was so very sweet. I realized that even though my Effexor pooped-out on me, my keyboard can still work its magic. And that magic has brought me a newfound love of my commute -- of the two hours every work day to think and breathe and write. Of life.

As I walked by Caution signs on the city sidewalks last night, I thought about those signs, about how, despite them, I didn't get the worry about falling ice stuck in my head. Instead, the worry slid through my brain; as if to make way for thoughts that I could start to type when I found my seat on the train. And rested my hands on my keyboard.

*  *  *

P.S. My conversation with Brian last night:

Me: Bri, when you see one of those "Caution Falling Ice" signs, what goes through your head? 

Brian: Um, nothing. Why? 

Me: Oh, nothing. Just curious. 

Tuesday, December 10, 2013

Good Words: The Day

People observe the colors of a day only at its beginnings and ends, but to me it's quite clear that a day merges through a multitude of shades and intonations with each passing moment. A single hour can consist of thousands of different colors. Waxy yellows, cloud-spot blues. Murky darkness. In my line of work, I make it a point to notice them. 

~ Markus Zusak, The Book Thief

Sunday, December 8, 2013

Truth, Lies, and Flu Shots

Unlike last year when getting my children a flu shot felt like a life-saving measure that had to be taken as soon as possible, this year, I totally procrastinated it. The flu clinics at the pediatrician's office were always during work hours and I didn't want to take a day off from writing or work to take them. After some quick research, I learned that I could their shots administered at a local pharmacy so today after Teddy's hockey game, me and the kids headed there. Brian had his own hockey practice so I psyched myself up and decided to stomach the pain that would be this two-on-one adventure.

I didn't want to ambush them so I introduced the idea when we were halfway home. I had seen a sign at another pharmacy about some national flu vaccination week so without any real details, I ran with it. I told the kids that "everyone" was getting their flu shot this week so I thought we could, too (I know, great way to promote independent thinking, right?!).

"Is Liam getting his shot this week?" Teddy asked, referring to his best buddy.

"I think so, I replied," completely lying.

Annabel then asked about Uncle Sean and Auntie Lauren.

"Yep, them, too," I lied even more. But it didn't matter. They both started to cry. Shit.

Once I could raise my voice over their wails, I took a different tactic. It's not one that I am proud of, but it's a sure bet and being outnumbered, I felt I had no other options.

"OK, so since you guys have been good today, if you want, I can take you to the one pharmacy that I know gives the shots that don't hurt." I did not like the way I felt while I said this, but they both stopped crying and looked at me very interested in hearing more.

I had already done my research and we were headed to the nearest pharmacy to home that administered the shots to kids, but I pretended like I re-routed us after they expressed their deep desire that we go to that particular pharmacy.

I went on to explain that there were some shots that took a long time and hurt a lot but then there were a few others that were really quick and felt only like a small pinch. Teddy told me that pinches hurt, so Annabel repeated that, too. I agreed that yes, pinches sometimes hurt, but we were really lucky to have a pharmacy nearby that could give them the quick version of the flu shot.

As I expected, my strategy was a wild success. As we headed down Route 24, Annabel decided to call the flu shot a "food shot" and once Teddy and I laughed, she didn't let up. We discussed what types of food they wanted in their food shots and I agreed to buy them a sweet treat after their short pinches. We all arrived at the pharmacy in very good spirits.

I like the idea and the cute little rhyme of a "minute clinic" but a more appropriate name today would have been "60-minute clinic." It took what seemed like an eternity to get all of our information into the computer and then wait for the man in a white coat (doctor? nurse? an introduction would have been nice...) to invite us into the little room for the shots.

When we got in there, Annabel completely lost it. Even the PEZ candy she had picked out did nothing to calm her down. She wanted out; just a tad more than I did.

Teddy, however, played it cool. He liked that I was telling the man how brave of a big brother Teddy was and he wanted to fill the role he saw laid out in front of him. When Teddy mentioned something to the man about getting the shot that didn't hurt, I thought I'd have to subtly explain more but the guy wasn't even listening enough to any of us to register Teddy's point. Since tuning out lots of noise is likely a very useful skill for someone who administers flu shots to stranger-children, I didn't judge.

I got Annabel to stop crying by explaining that Teddy would go first. Then I did something really stupid; like gambling-with-the-mortgage type stupid. I told Annabel that if Teddy thought the shot hurt then Annabel wouldn't have to get it. Even as the words left my mouth, I knew I had made a huge mistake.

Teddy, however, was convinced that it wouldn't hurt. That's probably what made me feel the worst because let's be honest, it kind of does, at least to those who don't get poked in the arm every few weeks.

My little guy was so very brave, but when the actual stick stuck, his face turned red and he started to cry. "It hu-wts!" he wailed. Annabel followed. In the midst of the madness, there was a knock on the door. I figured it was a manager wondering if a murder was taking place so I just ignored it. But the knock persisted so despite the chaos, I answered. It was my knight in shining armor...Brian in his coaching gear, straight from practice.

Before we left for Teddy game, I hadn't planned on having the courage to do the flu shots alone so I told Brian we would be home by noon. When I knew we'd be much later, I texted Brian to let him know I was getting the kids their shots. I hadn't said where but my husband is really smart that way. I don't know if I have ever been happier to see him, save maybe, walking down the aisle seven years ago. Teddy calmed down as soon as he was surprised by his dad.

With a newfound strength, we swiftly moved onto Annabel and after physically restraining her, she was poked and we were out. She ate PEZ the whole way home while she repeated to me that she never wants to get a food shot ever again. I kept saying, "OK," which I figured could be (mis)interpreted as my agreeing to never make her do it again. But I stick by the argument that I wasn't lying on that one; "OK" could also just mean, "OK, I heard you, baby girl." I had.

*  *  *

To be honest, I sat down to write tonight to try to find a way to channel my anxiety which you're likely sick of hearing about. Without any relation to the kids' flu shots, today I had some anxious moments. As usual, it was nothing that anyone could ever notice, but it was there as I spent all afternoon feeling my neck. I've felt pressure there for a few days now and I think one of my glands is swollen. Of course, this chucks my mind into those dark "What If" caves, but with the busyness of a weekend day with the kids, I never stayed there for long. However, when Brian gave them a bath and I was downstairs alone, I became so nervous that I decided I will call Dr. Bunnell tomorrow to run this all by him. Then it was back to usual--giving into Teddy's nagging request to use glitter on the Christmas letters, brushing up glitter from all over the house, and pretending that I will use the letters even though I won't because the glitter makes it impossible to read anything.

At bedtime, the kids both complained that their arms hurt when they lay down on them. I told them that happens to me after shots and that it gets better. Luckily, I'm not lying. Their arms will feel better, maybe even tomorrow, unlike my right forearm which hurt for many months after my long second infusion before it just went numb (for good, I assume, since it's still numb today). 

I read an interesting quote on one of the A Word A Day emails this week: "Truth does not change according to our ability to stomach it." A writer, Flannery O'Connor said this, and despite that she died in 1964, it seemed very timely to me today.

I know that right now, I've got a complicated relationship with truth. Even last night, during a rare evening out in high heels, I was reminded of the complexity of that relationship when an acquaintance referenced a relative whose treatment "didn't work" and whose breast cancer then "spread all over." I gave the woman the sympathy she deserved but then I quickly exited the conversation to try to get the hair on my neck to fall back down. I almost broke down in tears then and there, but Brian was smart enough to grab my hand and walk me towards the restrooms. There I realized that I had to get a grip on myself. This was not about an acquaintance saying something she shouldn't have said. We all have a right to tell the truth even to those who can't yet stomach it; whose nightmare may, in fact, be that very truth. The truth is that cancer f-ing sucks. Both this woman and I both know that. 

In the last few weeks, I've had several encounters like this one; breast cancer stories told to me that felt sort of grenades tossed at my psyche. I won't repeat any more of them here because I've made my point with the story above. But at work, in my own house, in Boston, and at a local bar for my high school reunion, I have had out of the blue moments of holy-shitness; moments where I fought to just keep standing. 

When I read the Flannery O'Connor quote earlier this week, I knew that I would write about it at some point. It really reached me. But I had no idea when or how it would become relevant until tonight when I desperately needed my laptop to steady me; when I realized something that's especially hard about being a young cancer patient. 

As kids, we are told so many lies to make us happy (and make us behave, of course). Between Teddy losing his first tooth last week, the Elf on the Shelf, and Santa's near arrival, I can barely keep the lies straight in our house. Truthfully, I'm a bit of a party-pooper in that I don't even fully promote these kid lies, as white as they may be. If Teddy asked me straight up about Santa, I'd be very tempted to tell him what my parents told me -- that there's a "spirit of Santa" but there's no real Santa. And I all but came clean with him on the tooth fairy when he got really scared of the idea of a stranger coming into his room while he slept to take his tooth. "Buddy, if you're scared, daddy or I will take your tooth out from under your pillow. Sometimes kids do get scared of that idea because it is very strange and when that happens, sometimes parents just help the tooth fairy out." He liked that idea and I can totally see why. 

Life moves pretty quick and sometimes it feels like I blinked my eyes and went from a kid hearing about the spirit of Santa to a parent hiding gifts deep in the basement. In what sometimes seems like a heartbeat, I went from a little girl being protected to a protector of my own children. Just like yesterday, I remember screaming at my pediatrician as she tried to vaccinate me and today my daughter did the same while I tried to hold her down.

No one is going to tell me that I need to toughen up when I hear stories like the one I heard last night; I'm surrounded by people that are far too kind and understanding to do that. But the truth is that I do, if only for my own good, and I'm glad that Ms. O'Connor explained it how she did. 

The truth is that is not a promise, at least, not in the sense that cancer won't kill me. The good news is that I've finally realized that beating cancer is not about dying of something else or avoiding the tragic stories of people whose treatment did not cure them. To me, beating cancer has become something different. I can most easily explain it by the ugly yellow rubber bracelet that I couldn't take off even last night when I was dressed up all fancy. I knew it looked awful with my outfit but I couldn't be without it. I couldn't leave behind my tangible (and again, very non-Lance Armstrong-ish) reminder that I always need to try to live strong. Last night in the bathroom stall as I forgot about my stupid make-up and wiped a few tears away, I clung onto that bracelet, so glad that I had worn it.  

I'm pretty sure that I totally botched the flu shot experience for my children today. I probably should have just told them that Yes, it will hurt a bit, it hurt me when I got it, but the pain goes away. They'd have kept crying and the ride to the pharmacy would have been very un-fun. But looking back, a bit more honesty likely would have been the better approach because in the end, I know that Flannery O'Connor is right. No matter what kind of bubble anyone creates around us, we're all going to have to stomach a whole bunch of painful truths. 

You may think this is a post about how mature I've become; about how cancer has taught me to face the truth and accept it. Eh, maybe in small but significant ways some of that has happened. But far more than that, cancer has taught me that it's hard to grow up and stomach the truth; especially the truth that we have so little control over what could happen tomorrow. 

I can't help but end with an awesome irony I discovered today. When I told the kids they could pick out one treat that was less than $5 at the pharmacy, they both picked out a tiny Mickey Mouse snow globe ($3.99!). Of course I bought the two snow globes (and candy) as their prize for being brave. And as I paid for them, I chuckled at the fact that my parents brought me to see Mickey as my prize for being brave, too. Maybe keeping a toe in the innocence of childhood isn't such a bad thing, after all.

Thursday, December 5, 2013

Butterfly Waltz

If ever there was a blog post that needed a preface, it would be this one. But I’ve made a promise not to preface so...onward...

My neighborhood is so much more than just a cluster of houses and I totally love it. I love everything about it, from the sounds of the football and soccer games at the high school field nearby to the tree that I think looks like a firework. I love that my kids walk in and out of our neighbors' houses like they live there, and that other kids do the same to us. I love that the games of baseball at our bus stop have given Teddy a reason to get dressed without me tackling him to the ground and I love that Annabel has already gotten in on the games and the older kids don't mind. I love that prior to moving to our house, a “neighborhood ladies party” to celebrate the holidays would have terrified me, yet just a few days ago I found myself meticulously shopping on Amazon for my grab gift for the upcoming get together. Given the “naughty or nice” theme, Brian's Amazon account is suggesting some pretty ridiculous things since I made my purchases but that's a story for another day.

When my sister comes to visit, she just shakes her head and smiles at all of the friendliness she sees around my neighborhood. Rachel's a city girl since she left our hometown to go to college in Washington DC and she gets a bit thrown off by a place where we help each other chase squirrels out of the house. Rachel says our neighborhood is like a movie, and it is, except that movies are fake and this is real, in an awesome way, at least, for suburban types like me. 

Last week while Brian was on the roof putting up the 38th set of Christmas lights, he saw an ambulance arrive at our neighbor’s house a few doors down. He told me about it later that night and we prayed that everyone was OK.

We barely know the couple that lives in the house, which is to say that we know the kinds of cars they drive and we had spoken with them briefly at our neighborhood block party this past fall. Mostly, we know the couple as the ones who live in “the perfect house.”

“The perfect house” isn’t particularly big—I’d guess it has three or four bedrooms and two baths—but from the outside (and probably the inside, too), it's absolutely immaculate. The man, who I will call “Saul,” was always outside caring for his lawn which, despite my husband’s best efforts, has always been the most manicured lawn on the street. Saul couldn’t have been more than 65 and yet he worked outside like a 20 year old. When a tree in his front yard fell a few years ago, he had the stump removed and a new tree planted within days, and when the plow trucks beat the heck out of his mailbox, he propped up a new one before anyone else’s pile of snow even melted. Despite that I've never really had the chance to get to know Saul or his wife, "Joan," I have always appreciated how nice it is to drive by a house that clearly reflects so much pride and hard work. 

My kids already know about the "perfect house" because it is always the first one in the neighborhood to boast bright Christmas lights and a picture-perfect tree in the front window. This year, before we had even decided on colored lights or white, the perfect house already looked totally perfect. I'd bet part of what got Brian on the roof last weekend despite his fear of heights was the sight of Saul and Joan's house shining in the distance.

But after the ambulance came last weekend, we didn’t see the couple's Christmas lights go back on. I realized that but it didn't really register until we heard the terrible news that Saul had passed away a few days later.

We heard of Saul's death via my neighborhood’s Facebook page, right before we went to bed. We were shocked and saddened, not in the way that deserves any sympathy, but rather, in the way that people feel when they know the deceased and his family only distantly. I lied awake for a while that night, wondering how Saul’s wife would ever find a way to sleep, and realizing once again that we are all so very vulnerable.

Last night as I drove by the perfect house on my way home from work I saw a few cars in the driveway, obviously family members’ who had gathered. My heart sunk at the thought of what was going on inside. And for some reason, I dwelled on the fact that Saul and Joan's Christmas lights were all still off.

*  *  *

Today at work our human resource staff came from the firm’s home office to talk to each of us about our benefits package for next year. I don’t generally enjoy forms, but every year, and particularly this one and last, I find these forms particularly painful. Even as a health care attorney, I still don't fully understand all of the details about the HMO or PPO choices and I hate making decisions on things like short-term disability or life insurance for my children.

The kind HR woman, "Kim," and I moved through my family’s health insurance and dental options quickly because I knew that whatever I had was working so I didn't ask any questions. I just figured, If it ain’t broke…

I paused, however, when I got to the life insurance part. I’ve already written about how I purchased life insurance after Teddy was born. I roughly did the math out back then and purchased enough so that Brian could pay off the house and put two kids through college if I wasn't around to contribute my income. I was healthy (supposedly) so it's not that much out of each paycheck (about $80, to be precise).

Faced with the blue sheet of paper today, however, I wondered if maybe I should purchase more life insurance. When Kim gave me the chart of what $60,000 of additional life insurance would cost (just $2 more per paycheck), I was ready to sign up. But as Kim started to check that box I asked if they would need to do a health screen like I had had when I purchased my main policy. She said yes, and that a nurse would come to my house. I told her to forget it.

“I’d never pass,” I smiled, but inside, that thought terrified me. I decided to forget the additional life insurance and we blew through the rest of the form. I headed back to my office a bit shaken, and with the disappointment that I still can't spot when I'm about to walk into what, at least for me, is a mental land mine. Luckily, I had work to do, so I did it, and when I sat down on the train on my ride home, this post flowed out of my fingertips like water.

The truth is, I have thought about the rest of this post for a while now, but I never felt the compulsion to complete it. This week, however, several factors converged and I can't stop myself.

*  *  *

I know that it's not fun to talk about death and this is not a blog about it. I don't know much about the deep and ever-present grief that I have read about and seen other people experience when they lose someone who was so central to their lives. But I do know about planning and despite that I love the quote, Life is what happens to you while you're busy making other plans, I still like to plan. So this post is about planning. 

I don't usually like to use this space as a soapbox, but tonight, I will. I believe that as adults, we have a responsibility to plan for our death. I don't mean that we need to sit down and plan the music we want played at our funeral (although for me, definitely include "Butterfly Waltz" on the's amazing). I just mean that we need to address issues that, if not addressed, could harm those we love when we're not around anymore. 

The problem is, there is never a good time for these conversations. They aren't easy before one has a reason to have them and I'd imagine they'd be exponentially harder once one did. I can just see the look on Brian's face if, on the dinner date we get with each other about once every six months, I asked him if he'd like to be cremated or not. As if he needs another reason to think I'm nuts. But seriously, as his wife, I should know this. 

I admit, one time, I blurted out two questions to him that were perhaps so wildly inappropriate, at least, considering the time that I blurted them out. We had just exited his Grandma's funeral in South Boston and we were waiting in the car for the procession to head to the cemetery in Dorchester. All of the sudden, I had a question I couldn't contain. I asked Brian, "If you died, would you want a wake?" He laughed at me, hesitated, and answered. Then I asked, "And would you want the services in South Boston (where he grew up) or in Canton?" I honestly had no idea what he would say. But I knew that he should be the one to decide that. So he told me, and we drove on. 

With kids, the responsibility to plan gets even more significant. Did I enjoy sitting down with a lawyer to draft a will? Not especially. Did I enjoy the quirky guy from Prudential who stuck around way too long to discuss life insurance? Definitely not. But I know those are things that my children deserve, and they are things that bring me peace, cancer or no cancer. 

Every person is different and some people may want to do more planning than others. I'm kind of in the middle, meaning, I have some general thoughts, which (of course) I will share. Not to preface, but these things do not necessarily concern cancer. They have to do with the fragility of life and with how much I would want to make a painful time for my family as easy as it could possibly be.  

First, yes, when the time comes, cremate my body. My spirit or soul or whatever that too-big-to-comprehend-thing-that-is-life that makes me me will have moved on, so my body will just be taking up space. And I hate clutter. 

Then, yes, I suppose there will need to be some sort of gathering. I would choose to have it at my church in Canton because that's a beautiful and special space and because I don't want anyone to have to clean the house. People can read a few nice poems, say a few nice words that make me sound better than I really was, and then have some snacks (sweet ones, please). I will not allow family debates about "what she would have wanted." I just want everyone to keep it simple and be together. 

As for my ashes, I'd like them thrown in the ocean at whatever time and spot is easy and convenient for whoever has the horrid job of taking me home in a vase. No one has to make it a big event. Just toss that dust in (not near the shore though, that's gross) and be done with it.

As for carrying on my memory...this is the one and only thing I am adamant about (besides the Butterfly Waltz). Do not, and I mean, do NOT, feel any pressure to have any sort of anything "in memory" of me. No golf tournament (I'd rather everyone focus on the Scott Herr tournament) and no special walk or run (please do the Jimmy Fund Walk instead!). No scholarship funds that my family would have to keep up, no nothing that would make anything more difficult for those I love. 

Of course, I know that for many families, running a golf tournament or a scholarship fund helps them, and these families are truly, Schwartz family?!? (just to name one). If that's the case with my family, swing or fund away. But in all honesty, don't feel obligated to do anything "in memory" of me. 

Don't get lazy, however, because I am most certainly not letting anyone off the hook. I have even bigger things that my loved ones most certainly are obligated to do. They must take care of each other, make time for each other, and not only love each other, but show it. They must laugh and cry together and listen to each other when they fight. They must remain a family; even when lots of shit complicates that. (And as my cousin Tara likes to joke when she talks about her husband not being allowed to remarry if she kicks the bucket, If you don't do what I say, so help me God, I will haunt you like a ghost!) I know, a scholarship fund may just be easier than this whole lovey-dovey listening to each other thing, but this is my list, not yours. 

I know that this post is outside the scope of normal social etiquette. Death is tragic, whether it comes suddenly or whether it is preceded by years of a courageous battle, and I am certainly not making light of that. All I am saying is that I believe we all have an obligation to plan. I know it's not fun or easy and I'm sure more than one person in the room when we bring it up will think we're nuts. But that's OK. I'd rather be nuts with a plan than "normal" without one.

On my ride past the perfect house tonight, I noticed that the Christmas lights were back on. Part of me felt so relieved, and then so selfish that I felt relief over lights despite the grief that huddled inside.

I don't know the first thing about Saul or Joan or about went on inside their perfect house before those lights got flipped on. Joan and her family have every right to keep those lights off or rip them down and stomp on them. We all should let people grieve how they must.

I have no idea what sort of plans Saul had or had not made, whether he had life insurance, whether Joan even needs it. All I know is that I don't want my family struggling more than they need to with my absence. And I don't want them wondering if they should switch the Christmas lights on even if I died the day before. On this point, please forget my "grieve how you must" statement because I'm making my wishes clear. Switch the lights on. Because even though it may not make you feel better, there's a little kid down the road, and maybe even a young mom and dad, who thinks your house looks perfect when it shines so pretty. 

Monday, December 2, 2013

Forgive and Forget

More than a year ago, I wrote about my cousin, Tara. I wrote about how Tara's dream was to be a famous comedian and about how she was working hard to make her dream come true.

I saw Tara this past weekend at a bridal shower in Connecticut for our cousin and his fiancé (who happens to be the current Ironman triathlon world champion!). Tara and I are by no means world champions, but I was thrilled to hear that she is still doing her comedy and she was happy that I am still writing.

As we caught up about her beautiful new baby and watched Annabel try to tag along with her second cousins who didn't really want to be bothered with her, we got to talking about Tara's last comedy show. Tara explained that that show was the first time in over two years of performing that she let herself just be herself. She said it was a huge breakthrough -- that she didn't hold back, didn't worry about what people would think about her comedy or what they would say about her. She made jokes that she knew were wildly inappropriate and she didn't care. Much to her surprise, Tara said that the show was a huge hit.

In the back seat on the trip home, Annabel slept in her carseat next to me while I reflected on my own writing. I hadn't written in over a week despite that thoughts had been swirling in my head as they always do. Of course, time had been a factor as Thanksgiving is particularly busy. But something else had been holding me back and I couldn't put my finger on exactly what it was until Tara told me about her last show. Then I started to wonder, Do I let myself just be myself when I write? Or do I write with too much sensitivity as to what people will think? 

When I sit down to write, it is usually because something is bursting out of me and I feel like if I don't put it down on my computer screen, I may explode. But so often, when my fingers hit the keyboard, I get sucked into writing, or at the very least, planning to write what I have come to call "a pointless preface." 

A pointless preface is a big explanation that is supposed to stop anyone from being offended or upset by, or even afraid of, what I write afterwards. In a pointless preface, I explain that this is only my story, that what I am about to write may not be true for others. I explain that even though I'm about to share something that upsets me, I'm not always (or even often) upset. I remind my family that I'm OK, or I tell my kids (the older version of them who will read this years from now), that I hope they don't mind what I'm about to tell the world about them. 

Typically, when I go back to revise the first draft of a blog post, I end up chopping out the pointless preface. I tell myself that all that prefacing waters down the substance of the piece. But still, I hesitate to hit delete, because pointless or not, I really do mean everything in that explanation. In the end, I just have to hope that the messages are already implicitly present. 

Clearly, however, I am still concerned about all of the issues that lead me to draft pointless prefaces. I would hate it if anything in this blog upset anyone -- from a member of my immediate family to a cancer patient whose name I will never even know. My very conscious desire to never hurt anyone through this space does, however, often give me a bit of a block. Of course, I could just write a blog draft that goes unpublished, and even just yesterday, I did that. But there's something about publishing a piece that keeps me particularly honest; that drives me to more clearly explain, if only to myself, what is going through my head.  

I give you all of this hopefully not pointless preface because I realize now what has caused me a bit of a block in this space for the last few days.

I love Thanksgiving and I figured that a Thanksgiving-themed blog would burst out of my fingertips sometime over the last few days. But it didn't. Other stuff did, but I worried that if I posted about other stuff, people would think I wasn't thankful or that I didn't have a wonderful Thanksgiving, and that couldn't be further from the truth. Hence, the preface.

So here's the last pointless preface I will (hopefully) ever write.

Yes, I had the most wonderful Thanksgiving and when I go back to work tomorrow and say that, not a single ounce of me will be lying. But what I feel compelled to write about here, what has been swirling in my mind for the last week has nothing to do with Thanksgiving. It has to do with betrayal.

*  *  *

This time last year, I was the sickest I have ever been. The day after Thanksgiving, I came down with a terrible fever and I was admitted to the hospital where I learned that the chemo I had received there just ten days prior had killed all of my functioning white blood cells. I can't remember ever feeling so sick or so tired. 

A friend of mine recently wrote an amazing blog in which she referenced her conditioned response to a particular song. That blog helped me this weekend as particular sights and sounds triggered memories of how sick I felt one year ago. I remember the day after Thanksgiving last year, lying in my healing chair, shivering despite my four blankets, while Brian used this strange little gun to try to get the broken Christmas lights to work again. The As Seen on TV gadget made a loud clicking sound and when I heard that sound again this year, I felt sick to my stomach. Thanks to Kate's blog, I reminded myself of the power of conditioned responses. I'm not sick, I told myself, I just have very vivid memories of being sick. There's no denying it, I really do. 

I think these memories are part of why I have woken up these past few days with more anxiety than my little peach pill can seem to handle. Since I had the silly writer's block referenced above, I did the next best thing for my anxiety -- I ran. 

Before the sun rose on Thanksgiving morning, I found myself at the track where the crowds would gather a few hours later to cheer on their hometown team (Brian insisted that I not run on the street since so many people drink the night before Thanksgiving -- see, the closet worrier!). It was so peaceful at the track and while I ran, I forgot about counting laps so that I could try to figure out why I've been particularly anxious lately. I figured out that it has to do with trust and betrayal. 

I've never read The Hunger Games but I recently found a quote from that book that really resonates with me. Suzanne Collins wrote:

“For there to be betrayal, there would have to have been trust first.”

Before I was diagnosed with cancer, I generally trusted my body. Of course, I was slightly hypochondriacal, which means that I didn't completely trust it, but so many of my ills had turned out not to be cancer that I trusted the lump in my breast would yield the same result. Only it didn't. Instead, my body betrayed me.

I've wondered why all of the sudden, the betrayal that happened almost 16 months ago is causing such significant emotions in me now. Shouldn't I be over it already?!? Maybe I should; I have no idea the timeline on healing after a cancer diagnosis. But what I do know is that I think I discovered why betrayal has been on my mind so much lately. It's because I've started to trust my body again. 

Which brings me back to the quote, with which I agree completely. The problem is that it puts cancer patients like me in a bit of a bind. On the one hand, we can learn to trust our bodies again, have faith in their ability (teamed with the treatment, of course) to stop the cancer from recurring. But that approach risks betrayal; the ultimate betrayal. Cancer patients, particularly, I think, younger ones, have all tasted betrayal. Since it tastes so indescribably awful, it's hard to learn to trust again.

So the betrayed could do what I sometimes find myself doing -- we could distrust. What does distrust look like? It looks totally normal to the outside world. It looks like me opening my deodorant, even though inside I fear that when I reach under my arm, I will feel a lump and spend the rest of my day undergoing tests for the recurrence we have fought so hard to elude. It looks like a man feeling his neck for anything abnormal or a woman taking an aspirin and praying that it makes her headache go away. It looks like nothing, but it feels like a very heavy burden.

I'm not "prefacing" when I say that even when I have those moments of distrust, those fleeting moments of doubt, I am able to return to the trust and the faith I have developed that my treatment worked; that the HER2 protein is no longer able to make the cancer return under my arm, in my neck or my brain, or anywhere else; that I will not be betrayed that way again. Of course, none of us know what tomorrow will bring, but life seems to be better when, nevertheless, we trust that it will be bright. 

I have never taken such good care of my body, and that is happily considering the massive quantities of dessert I consumed over the past week. I have never been so healthy in the way that I approach food or sleep or exercise. It's not because I want to look a certain way. It's because I want to trust the body that betrayed me once before. I want to forgive the brutal disease that, for reasons I will never know, grew in my left breast. I want to forgive cancer, even if I'm never be able to forget it.