By the Lake

Tonight Brian went to scout a game so I invited my Mom over for dinner. Obviously neither of us were going to cook anything (that'd just be silly), so my Mom graciously picked us up some sandwiches on her way home from work.

After the kids went to bed, we enjoyed our matching turkey and swiss cheese subs and broccoli cheddar soup. We chatted a bit, and in a round about way that would be pointless to recount, my Mom ended up telling me something I never knew before. She told me that her favorite blogs that I write are ones in which I talk about fun things. I'm pretty sure this was a nice way for her to say that she likes the ones that don't talk about cancer. Fair enough. Unfortunately for her, however, I know there aren't many of those.

I started a blog on the train home tonight that I'll finish sometime soon. It's going to be a humongous downer for my Mom though because it's, well, a lot about cancer. So I'll save that one for another day and for the next 15 minutes, I'll thank my Mom for a tasty dinner by writing about something way more fun than "Young with Cancer." I'll write about Mother's Day.

When Teddy was just a few months old, I decided that me and my Mom needed some time together. We had gotten so little of it since Teddy was born and I was feeling distant -- not really distant, but more distant than we had ever been before. I proposed the idea of going away for a night together for Mother's Day and so that's just what we did. We drove up to Meredith, New Hampshire, home of Keepsake Quilting, a gigantic quilting store.

Now let me be clear, my mother and I are not quilters. A while back, we pretended that we were and somehow we stitched together a few very basic quilts (maybe, just maybe, my Mom hired someone to sew the back onto her quilt -- but don't tell anyone). Even our pretending didn't last long, however, because that hobby requires a lot of time and patience. Unfortunately, neither time nor patience is in abundance for my Mom or I. So we just buy fabric instead. And there's no better place to buy fabric than Keepsake Quilting. Keepsake is to quilters what the Container Store is to organizers. I'm sure you get the point.

My Mom must have procured enough fabric for a hundred quilts, and I'm not even exaggerating. It's fun having that much fabric because the colors are gorgeous and lots of fabric means lots of trips to the Container Store to buy different boxes in which to store all of it. Then it means lots of labels because obviously the boxes need to be labeled by color. I'll never forget when my Mom labeled a drawer of fabric "Mystery Colors."  Mystery Colors? I had a good laugh about that one. What in the world was she talking about? We'll probably never know.

For the past four years, my Mom and I have driven up to New Hampshire after work on the Friday of Mother's Day weekend. I look forward to that trip more than I could ever explain. I take the train from North Station to Winchester and she picks me up at the train station near her hospital. She's usually purchased some yummy treat and we snack a bit on the way up while trying to preserve our appetites for our dinner.

Once we get to New Hampshire, we checkin at our hotel, which for the last three years has been Church Landing. Church Landing is part of the Inn at Mill Falls and it's one of the coziest, most comfortable places I've ever stayed. There's always a fire snapping in the fireplace and the wooden beams everywhere whisper Lake Winnipesaukee sweeter than anything else could.

We take our time to wander down to dinner because, well, this is one of the only times in the year that we can take our time to wander anywhere. Over dinner, we talk about nothing and about everything and it's perfect.

After dinner, we head to our room, wonderfully full, and we watch some stupid TV or putz around on our laptops. Then we sleep in one of the most comfortable beds ever made. We wake up sometime after eight the next morning and with two young kids, that pretty much feels like noon. It's incredible.

I think it was our second trip up to Church Landing that we got ambitious on Saturday morning and decided to visit the spa at the hotel. We got facials and massages -- the second time in my life I got either. The massage could have been nice, I think, had the massage lady not lathered each of us up with some horrid oil that smelled like potpourri and felt terribly greasy. We had already checked out of our room so I couldn't go back and shower despite that I felt like I had just been dropped in a dunk tank of extra virgin olive oil. We always shop for a while before we head home and that Saturday afternoon, I avoided my reflection in any mirror we passed because I didn't want to see that I looked like I hadn't bathed in months.

The year after, and the year after that, we nixed the spa and did something far, far more relaxing. We sat here:

The last two years as we sat in these chairs by the lake, it would have been impossible to make the temperature, the air, or the sun feel any more perfect. I believe in Heaven, and I believe that part of it looks and feels just like this.

Must See News Clip

This morning while I was receiving my Herceptin, Maggie came by my infusion suite to say hello. I still can't believe that she is a nurse practitioner at the very place where she was treated for her own cancer. Talk about sheer strength and resiliency -- she's amazing.

When Maggie left, my infusion nurse, Karen (who was also Maggie's infusion nurse), asked me if I saw Maggie on the news last night. No! I exclaimed, And she's in so much trouble for not telling me about it!

Well, this is what Maggie gets for trying to hide information from a girl and her blog (wink, wink).

I admit, this video is a bit outside of my cancer cocoon (i.e., some of the information scares the crap out of me). But if Maggie can be brave enough to be in the video, I should at the very least be brave enough to watch it -- even if I only have one eye open. Because even with that one eye open, I am slowly starting to see how important it is to raise awareness among young women about this disease.

CLICK HERE TO SEE MAGGIE ON THE NEWS

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Yesterday's New York Times also included an article about breast cancer incidence in young women. I won't lie, the hair on the back of my neck is standing up over a particular sentence in here that I will not repeat. It's absolutely terrifying though and I'm jumping back into my cocoon now. If you're like me and don't want to know this stuff, do not click into the article. For you brave ones out there, you can click HERE.

Finally, for any of you who want to keep clicking (or just end on a brighter note), here's a quick link to a prior entry, Meeting Maggie.

Just Do It

I’ve been reading a book by Anne Lamott called Bird by Bird: Some Instructions on Writing and Life. I love writing, and, come to think of it, I love life a lot too, so it's probably no surprise that I'm thoroughly enjoying this book.

Last week, I Googled the author's name because I needed a visual of this woman who was making me laugh and learn so much. My Google search lead me to where Google searches most often lead me -- to Wikipedia. There, I found this quote by Anne Lamott: 

I try to write the books I would love to come upon, that are honest, concerned with real lives, human hearts, spiritual transformation, families, secrets, wonder, craziness—and that can make me laugh. When I am reading a book like this, I feel rich and profoundly relieved to be in the presence of someone who will share the truth with me, and throw the lights on a little, and I try to write these kinds of books. Books, for me, are medicine.

Even though I haven't written any books yet, I so deeply agree with what she says here.  

In one chapter of Bird by Bird, Anne Lamott gives advice about creating great fictional characters. She compares characters to trees and even though that may sound corny when I explain it, it was great when she did: 

When you write about your characters, we want to know all about their leaves and colors and growth. But we also want to know who they are when stripped of the surface show. So if you want to get to know your characters, you have to hang out with them long enough to see beyond all the things they aren't. ... 

Dying people can teach us this most directly. Often the attributes that define them drop away -- the hair, the shape, the skills, the cleverness. And then it turns out that the packaging is not who that person has really been all along. Without the package, another sort of beauty shines through. For instance, on a retail-therapy outing ten days before she died, my friend Pammy discovered that she could no long write her name on checks, and she turned to me and said, "What is the point of being alive when you can't even sign checks?" ...

One the first anniversary of her death, I visited a memorial garden at the radiation clinic where she had been treated, and discovered that someone had planted a yew tree there in her honor. ... Near the yew were tall flowering bushes -- some kind of poppy, perhaps. But almost all of the petals had fallen off, so mostly I just saw a thousand tangled stems growing skyward. Then I realized that the stems were actually connected, and that they bore seeds that would flower again in the spring. 

That's how real life works, in our daily lives as well as in the convalescent home and even at the deathbed, and this is what good writing allows us to notice sometimes. You can see the underlying essence only when you strip away the busyness, and then some surprising connections appear. 

*  *  * 

Tonight I want to ponder a question that I’ve asked myself several times lately, mostly when I'm walking to the train (in a future post, I'm likely to discuss why this question comes to mind on those walks). Anyways, the question is a simple one -- How has cancer really changed me? Truthfully, I don’t know, which is precisely why I want to write about it.

The first thing that I realize when I go to answer this question is how little I've hung out with pre-cancer me. I thought about this when I read the passage about fictional characters above. It's kind of pathetic to think that I've sat around thinking about other people's character -- or even fake characters' characters -- more than I've thought about my own. Well, there's one way that cancer has changed me -- I've hung out with myself a lot more. Mainly, I hang out with myself when I write, and thankfully, nine times out of 10, I don't end up totally hating the company. 

I don't have any sort of science background, but as I approached this question, I found myself considering concepts that I remembered from my high school science labs -- concepts that involve variables and constants, cause and effect. After some time just sitting and thinking, my mind wandered to this. 

In 2011, my friend Hannah and I were both associates at Ropes & Gray. One early September morning, we joined our client, Wendy, for a master calendar hearing in front of an immigration judge at the John F. Kennedy Federal Building in Boston (I've already written about Wendy several times before, including at the link HERE and HERE).  

Hannah is a litigator while I'm a pretend-lawyer – you know, the corporate type. For this reason, and for the fact that Hannah was more experienced, and well, a heck of a lot smarter, we designated her as the “primary attorney” on Wendy’s case. I was really happy to have the primary attorney box checked off on Hannah’s representation form and not on mine because I was scared enough just being in that courtroom, never mind having primary responsibility for the life of a woman I really cared about.

A master calendar hearing involves the judge plowing through several cases – upwards of a dozen, or maybe even more, in the morning session alone. As we waited for Wendy's case to be called, Hannah and I sat in the back of the small and crowded courtroom. I was so nervous that I felt sick to my stomach, and my legs felt weak.

When the judge finally called us up, there were only two seats at the table on the lefthand side of the courtroom (the Department of Homeland Security attorney sat on the right side). Obviously those seats were for Hannah and Wendy. I stood behind them, hoping that no one could see me shaking.

Wendy's hearing that day lasted for no more than five minutes. Hannah was brilliant, just as I knew she would be, and I didn’t screw up the one sentence that I had to say – “My name is Tara Shuman and I am representing Ms. ___ pro bono, Your Honor.” Phew!

Towards the end of our five minutes, the judge assigned us the date for Wendy’s merits hearing – the full-day chance to prove her asylum claim. February 5, 2013. Ultimately, that would be the day that the judge granted Wendy asylum, and the chance to build a new life here in the United States. It would also be my first official day back at work from my six month medical leave. But I'm getting ahead of myself -- or just repeating myself -- I'm not sure. Anyways, at the end of those five minutes back in September 2011, I felt like I had run a marathon, which I'd imagine would be really exhausting, and hurt my knees. It always amazes me how physically draining it is to be nervous.

I’ve already written much about how this story unfolded – that in 2012, Hannah and I both left Ropes to join other law firms – that Hannah had resigned from the case when she left Ropes but joined again after I was diagnosed so that she could help me and the new Ropes & Gray associate navigate unfamiliar waters.

When Hannah left Ropes, I was next in line in terms of experience on Wendy's case. So when I filled out a new representation form for the court, I became Wendy’s primary attorney. When I checked that box months before my diagnosis, it terrified me. I had no idea how I would ever find the courage to lead Wendy through that hearing in February 2013.

Then came cancer. After my diagnosis, I backed off of several commitments that meant a lot to me, including work I was doing for Teddy and Annabel’s school, which I loved. But I knew that I had to get focused on beating cancer.

Even in my darkest days of last August when I reduced my responsibilities down to the bare bones, I knew I wouldn’t quit on Wendy's case. I couldn't quit. She had been to Hell and back and in my mind, even complicated cancer treatment was not a reason to step away. Still, I didn't feel comfortable forging ahead powered by so much sheer stubbornness. I needed to know that Wendy would be OK even if I wasn't, and once Hannah joined us again, I knew that Wendy's case would be handled by the best.

Starting after my first chemo, except for a few complicated weeks (like the one I spent in the hospital), we met with Wendy almost every week. We prepared and prepared and prepared. And without me even realizing it, all of my fear about Wendy's hearing was disappearing. 

I remember the night before we headed to court. I stayed up late to go over all of my notes, and then I took those notes to bed to review them one more time. I set two different alarm clocks for 5am so that even a freak alarm clock malfunction would not cause me to be late. But notes and alarm clocks are boring. More importantly, something happened that night that really surprised me, and made me think that maybe cancer really had changed me. What happened? It was simple -- I wasn't scared at all. 

That night, I had no doubt in my mind about how I would perform the next day. I don't mean that I knew that Wendy would be granted asylum, because to be honest, I had no idea what the outcome would be. I didn't know how Wendy would do on the stand, either, (we had some trouble during a few practice sessions), and I didn't know how the judge or the government attorney would behave. But I didn't think about all of those things. I just remember thinking -- I know exactly what I will do. I wasn't thinking about what I should do or could do or really, really wanted to do. My mind was focused on the will do, and the next day, I did what I believed I would do. 

I'll never know if the difference in my confidence and my courage from September 2011 to February 2013 had anything to do with cancer. Part of me thinks that it does. But not necessarily in the way that I'd have originally thought. 

I don't think that cancer necessarily gave me something that I didn't have before (aside from all of those dandy side effects including the infections that I have been enjoying along my eye lids again as my eye lashes struggle to regrow). But I do think that cancer did something like what Anne Lamott was talking about in her book above. 

For me, cancer stripped away some of the busyness in my mind. Sure, it added some other busyness, too, and I've written about that (the drinking water analogy comes to mind). More so, however, cancer made me stop focusing on what I should do or could do, shouldn't do or couldn't do. It made me move beyond the point of declaring what I really, really want to do. And cancer made me just do it. 

I love Anne Lamott's tangled branches analogy because it fits me now -- cancer didn't necessarily untangle every little tangled thing in my life. I wish I could say that little things don't bother me anymore but I'm human and they do. (For proof, last night as Brian and I were going to bed, I told him that I was having anxiety about the silliest thing. Some papers had fallen behind the drawer of my file cabinet so that every time I opened the drawer, I heard the papers crinkle. I tried to extract the paper but I failed. So at 11pm, Brian went downstairs to ease my ridiculous anxiety. With a screwdriver and some tongs, he removed the papers and made my file drawer crinkle free. He's my hero. And I'm a huge pain in the ass.) 

Anyways, I'm still tangled sometimes. But other times, cancer has helped me strip away the busyness and see with great clarity something that was there before, just covered up. It helped me stand up and advocate, it helped me write, and it helped me create an idea that I have been building piece by piece every day. 

I love Adidas sneakers and I'll choose them over Nike brand for the rest of my life. Nevertheless, I'll always cherish Nike's famous slogan. Just do it. OK. I will. 

*  *  * 

Tomorrow is a Herceptin and therapy lady day. I worked on Monday instead of Wednesday this week since tomorrow, I'll be busy at Dana-Farber until lunchtime. After lunch, I'll head home and Sean is going to help me with some work for Writing Saves Lives. I've made some great progress on my idea these past few weeks and I'll provide an update -- as well as an opportunity for you to get involved -- very soon. Please stay tuned!

Lucky Water

Having cancer can complicate something as simple as drinking water. Please, let me explain.

Before I got cancer, here were my basic thoughts when I drank a glass of water:

I’m thirsty. I think I’ll have some water. Gulp. 

Now, after cancer, here’s a bit of what’s going through my head when I drink a glass of water: 

I’m thirsty. I think I’ll have some water. I can’t have tap water though because there could definitely be some sort of mineral or metal residue or chemical in there that could ignite another tumor. Are there any bottles of water left? Oh, but wait, what if that water bottle was in a hot water bottle delivery truck and the plastic melted just enough to put some sort of plastic carcinogen into the water? That would be bad. But they must make sure that doesn’t happen. Could they really air condition the backs of trucks? Ah, yes, that’s called a fridge. Right. But I bet they don’t put the water bottles in refrigerators...

How about just a Nalgene bottle? If it says “BPA free” it must be OK. Or is it those recycle numbers on the bottom that matter? Darn, I can’t remember which numbers were safe and which aren’t. OK, I’ll just use that metal bottle that Brian brought home from a golf tournament last year. "Made in China." Huh. Are they as thoughtful about cancer in China as they are here? I have no idea...

Alright, glass! Yes, that must be the safest way to go; as long as the soap from the dishwasher can’t cause cancer (note to self to get organic soap). I’ll just fill up my glass from the big blue bottle that they deliver to our house every month. Crap. Those bottles are recycled. And I got some silly email from Poland Spring last month about how they meticulously check those bottles before they recycle them because some people use the bottles for things like gasoline. Gasoline? What?!? I never even thought about those bottles being recycled, never mind that there could have been gasoline in them. Then again, I’d taste the gasoline, wouldn’t I? I hope so, because gasoline is sure to cause me cancer. Oh sweet Jesus. I’m thirsty. Gulp. Chemicals? Metal? Plastic? Soap? Gasoline? Nope. Just tastes like water. 

[Note: I wrote the above paragraphs on the train to work this morning. Before lunch, I scrolled a bit through my Facebook News Feed and I came across a post from Dana-Farber about men getting breast cancer from water at some camp. Obviously, I jumped back in my cancer cocoon and didn't read any more. But I honestly could not believe that that article popped up on a day that I had already begun to draft a blog about cancer and water. I guess it's kind of funny; in one of those really not-funny-at-all kinds of ways.]

* * * 

Ever since Dr. Bunnell told me that my cancer was simply bad luck, I’ve thought about those two words an awful lot. Bad luck. Does this mean that now that the cancer’s gone, my luck button is reset again? Would I need to have a second totally separate bout of bad luck for it to return? Or am I predisposed to the stupid disease so that my luck button doesn’t ever get a full reset? Urgh. Brain! Shut off!!! But it won’t. My brain’s like Annabel’s Furby (or “Shurby” as she calls it) -- it has no Off button and sometimes I want to lock it in the dark bathroom so it shuts up. 

Last Friday night, I found myself at Foxwoods for the second time in my life. This was so not me, not only because I’m too cheap to gamble (aside from a lottery ticket every now and then), but mostly because I’m not exactly the spontaneous type (unless you call unplanned trips to the hospital spontaneous). Sean had convinced Mom to go to the resort casino for a night to extend her birth-week celebration and at the last minute, I decided to join them. Of course, Brian was the best and encouraged me to go. It helped that he’s working on some hockey video that has him drooling over his keyboard for countless hours so I thought I’d sieze the day. Carpe Diem, right? I just Googled it -- it means, "the enjoyment of the pleasures of the moment without concern for the future." Yes, precisely.

Friday after work, my Mom, Sean, Lauren, and I headed down I-95 a bit giddy for our adventure. We each had some cash set aside to burn. I chose to cap my kindling at just under the amount of money that I take home for one day of work. I thought it would be reasonable to lose that in exchange for a great night out with my family.

Sean and Mom love playing Blackjack. They don’t do it often, or (sorry guys) particularly well, but they have a blast. After they went to Las Vegas last year for a work conference, I heard all about their success at the Blackjack tables. I had to see their luck in person, so I put on the tightest, shortest skirt I own (not sure why) and headed out to the casino with my family (scandalous, huh?).

Sean was, as usual, the most thoughtful brother and son and he set out on finding me (the cancer patient) and my Mom (the asthematic) the smoke-free casino. We walked to the end of the Earth before we got there, despite that along way my Mom and I insisted that the regular casinos were fine. Maybe Sean knows me enough to know where my crazy mind had already headed – down the dark route of, What could second-hand smoke do to me? I envisioned the smoke traveling to my chest wall and turning one little cell bad. Funny, I don’t think anyone else at Foxwoods was having similar thoughts as their cigarette ashes nearly fell into their laps.

The smoke-free casino was a bit of a misnomer. “Smoke-diminished-ever-so-slightly casino” would have been more appropriate but there probably wasn’t enough space on the sign for that. We all decided it wasn’t worth it and we headed back to the more manageable smoke-allowed casino at the MGM Grand Hotel where we were staying. In the end, I decided that I wasn’t going to let smoke ruin the night and I did something that I’m getting better and better at – I put the dark thoughts out of my head and decided to just enjoy myself.

After a fabulous dinner (chicken parm, bread, and chocolate tart), we hit the Blackjack tables.

I don't think I've ever played Blackjack before. I spent the first few rounds trying to add up numbers in my head after the dealer dealt her last cards. I was ashamed at how weak my math skills had become – another worry that I likely shared with, well, no one. Finally, I gave up trying to figure out if the numbers added to more or less than 21 and after each hand, I just waited to see if the dealer took my chips or added more to my pile. Most of the time, she took them.

Despite that we all lost every dime we had allocated to the night, we had such a great time. We shared the table with a small group of guys – twenty-somethings from South Boston who had come to Foxwoods to make some money on a Friday night. I’m not sure what they thought of a mother and her grown children who had clearly come down to Foxwoods comfortable with the fact that they would lose everything that they put on the table.

One take away from the night is that I hate slot machines. At the slots, I just sat alone, hitting a button and feeling like an idiot that I couldn’t even tell if a certain line of images was a winner or a loser. I decided $20 was enough to lose there. I’d rather lose the rest of my money while having some laughs with my family. So Blackjack it was for the rest of the night.

The main topic of conversation at our Blackjack table was how unlucky we all were. Yep, pretty much from start to finish, the dealer absolutely crushed each one of us. Of course, she didn’t enjoy it either because us losing surely meant less tips for her, but she hung in with us nonetheless. She told me about “the book” and what it recommended on each move. At one point, however, she surrendered her teacher role and admitted that there was nothing she could do for any of us; luck just wasn't in our favor that night.

It was true -- our luck was so bad that at one point, a middle-aged man wandered over to our table to join the game. He stayed for two minutes then, without a word, got up and walked away. Apparently he saw that the needle of the table's luck gauge was dead at zero and he felt it best to bolt. Smart guy because the needle never really moved.

By 2am, we knew that we should have been tired, but we weren’t. At all. Sean said it was the oxygen that they pumped into the air that made us feel like it was noon. Whatever it was, they should pump it into the vents of America’s office buildings (as long as it doesn’t cause cancer); we’d be sure to lap China and the rest of the world in productivity within months.

Last night, I sat down to write a piece about luck. The Oscars were on – the awkward-conversations-on-the-red-carpet part – and I got distracted. First, it was by how short Kristin Chenoweth looked next to everyone else. Second, it was by Robin Roberts.

When I first saw Robin Roberts in her stunning blue dress, my eyes were immediately drawn to her arms. They looked thin – too thin, or maybe not – and I wondered if she lost weight because of worry like I had (although my arms sure as heck never looked as athletic as hers!). I tried to see if she had any visible bruises along her veins, although I realized that if she had, she had probably used make-up or a tip to the camera man to cover them up. I tried to decide if she looked sick or healthy, but I ended up stumped on that one. Ultimately, I decided that I'd describe her as looking completely triumphant. And this was all while the TV was on mute.

Last Friday, before we hit the road for Foxwoods, Sean and I had a few minutes at my parents’ house. We were standing around the kitchen while we waited for Lauren to get home from work. I grabbed a People magazine (my Mom loves her People magazine). It was the one with Robin Roberts on the cover. I knew I shouldn’t turn to her story, but my hands flipped the pages there nonetheless. 

I had one question about Robin Roberts that I needed an answer to – How long after her treatment for cancer did she get MDS (the type of leukemia that I understand is caused by chemotherapy)? I skimmed the pages and saw that she had been treated for breast cancer in 2007. 

"Breast cancer?!?" I exclaimed. 

"Yeah, what did you think she had?" Sean replied. 

"I don’t know but I didn’t know it was breast cancer," I answered, with that pit in my stomach that I remember all too well from last summer and fall.

I started rambling out loud, something about how I couldn't believe that it wasn’t until five years later that she learned of her second type of cancer. To stop my rambling, Sean took the magazine from me. He started to skim the article and I knew he was looking for something that would make me feel better. He didn’t find anything, probably because he knows me well enough to know that once I get into a certain mental zone, I can twist almost anything into something dark. A minute later he declared that we weren’t worrying about cancer – we were going to Foxwoods. And so we did just that.

I haven’t worked up the courage to watch anything about Robin Roberts although I know there have been some quality pieces produced lately. I will watch them one day, but not quite yet. Because while I feel that she is an incredible example of sheer beauty, strength, grace, and intelligence, she still represents a reality that scares me to death (eek, bad analogy); someone who had some bad luck that caused some more bad luck. Breast cancer then cancer from the cancer treatment? I mean, come on. Doesn’t this poor woman, and so many other MDS patients like her, deserve a break?

So for now, I’ll stay at a safe distance from her story – a distance that is close enough to see that Robin Roberts may have had some bad luck, but ultimately, she had some great luck, too. She found a bone marrow donor, she underwent successful treatment for her breast cancer and her MDS, and she's back to work. Come to think of it, maybe that's a lot less about luck than it is about hard work. Because Robin Roberts fought until she won, and even though that's not a great strategy for a casino, it's really helpful in a fight against cancer.

*  *  * 

If my cancer was based on something that I did, or, Heaven forbid, something that I am doing, I wish more than anything that I could know what that thing is. If it’s plastic water bottles, I'll boycott them forever, and start a worldwide campaign for everyone to join me. If it’s dishwasher soap, I’ll eat off dirty plates and shout from the hilltops for everyone else to do the same. But there’s a good chance I’ll never know exactly what caused my cancer. So that leaves me here blabbering on about luck and about my complicated relationship with it.

In the end, I'll never understand luck. I'll never believe that "things happen for a reason," either. Instead, I'll go on believing that things happen -- for some reason or for none at all -- and how we react to those things determines how the next moment of our life will unfold. In other words, it's not so much the good luck or the bad, but rather, what we do with it when it's plopped in our laps, or thrown in our face, or kicked at our boob when we're not looking. 

Tonight Brian had a late practice so I put the kids to bed on my own. After Teddy and I tucked Annabel under her Blankie and gave her the kisses and hugs that she demanded, we headed into Teddy's room to read a book. All of the sudden, Annabel burst into tears and since that's very rare, I went right in to see what was the matter. "I need some water," she told me. I laughed out loud and headed to the bathroom. As I filled a plastic Mickey Mouse cup with tap water, I thought to myself how lucky I am to be here to pour my baby girl her water. Then I prayed that Disney just wouldn't be so cruel as to make a cup that causes cancer. Finally, as I watched Annabel take a sip, I realized how much I hope that she never has to think about the water that she drinks. Gulp. Gulp. Good night. 

Short Entry -- Short Hair

I've been writing tonight but nothing's really coming together. It's probably because the Oscars are distracting me and Teddy's been yelling down to us for an hour and fifteen minutes. So I'll just roll with it, publish a photo, and sign off. 

So how about this fabulous haircut!?! I'm loving it and will just go on pretending that I don't need Charlize Theron's face to pull it off. 

 

Good Words: Trouble

"One trouble with trouble is that is usually starts out like fun."

-- Ann Landers

Matching Marrow

When my sister, Rachel, and I were kids, we told each other that if one of us ever got cancer, the other one would shave her head. Thinking back, it was a really odd conversation to have had, but Rachel and I have had, and continue to have, all sorts of odd conversations. Just for the record, I think that the oddest conversations we've ever had took place when we waitressed on Long Island together in college. Neither one of us has ever been good at being bored and at the beginning of a shift when things were slow, we'd stand around together trying to keep ourselves entertained. We used to joke about how miserable we'd be if we had to waitress for the rest of our lives (no offense to waitresses -- it just wouldn't be a good fit for us long term; me because I hate unhappy people telling me what to do and Rachel because she doesn't like to stand up for too long).

In these slow times, Rachel would keep me laughing by asking me hypothetical questions that usually started with, "Would you rather be a Lobster Roll waitress for the rest of your life or ___?" Then she'd insert some ridiculous ending and I'd have to decide. I'll never forget one option that had me howling with laughter -- "Would you rather be a Lobster Roll waitress for the rest of your life or have three boobs?" At the time, I chose three boobs. Good choice, especially now that I found an awesome plastic surgeon.

Where was I? Right, Rachel and my pact to shave our heads. So, here's one small reason why I absolutely love my sister -- when I went bald from my chemo, Rachel didn't shave her head. Instead, she told me that I looked beautiful, though was honest and straightforward about her opinion that I looked better with hair than without. Then she told me there was no way she was shaving her head, despite our decades old pact, because she'd "look like a pumpkin" with no hair. She wouldn't look like a pumpkin, but that made me laugh. On her next visit to Boston, Rachel showed up with hair extensions. No joke, she did, not for any other reason but that she wanted her hair to look fuller. And it did. In fact, it looked incredible, and I told her that in all sincerity.

Annabel reminds me, and a lot of people in my family, of Rachel. They really are so similar in the way that they march to the beat of their own quirky, fabulous little drummer. For instance, this was Annabel tonight:

Yep, that's just how she wanted things. Rachel's the same way. She doesn't care what people think -- she knows who she is and what she wants and she's not afraid to speak her mind. I love her spunk and I love that Annabel has it too.

Unfortunately, Annabel doesn't get to see Rachel very often and when Rachel comes to visit, Annabel isn't usually nice to her at first. Part of me thinks that Annabel is punishing Rachel for living far away.

Last Monday afternoon, Rachel visited. Annabel gave her a total 'tude at first. But it turned out they just needed a few minutes alone, because when I gave them that, I ended up finding them both dancing to the Gangnam Style YouTube video together -- pumping their fists in dorky unison.

Rachel really is so wonderfully refreshing. Where I can default to being serious and no fun at all, Rachel defaults to a good time. She has this term she made up to describe people whose presence makes a situation better; more meaningful, more fun. She calls those people "value added." Rachel is value added. She can make a lazy afternoon come alive with a silly dance, and everyone's happier because of it.

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The first thing I did when I got to my office this morning was dial the number that my Mom posted in her Call to Arms entry. The Sean fellow that my Mom mentioned picked up, and he really was as nice as she'd described. I explained to Sean why I was calling -- that I was curious about the bone marrow registry. He gave me the number of the National Marrow Donor Program (NMDP) that is affiliated with Dana-Farber (866-875-3324) and we talked for a few minutes about the program.

Within 20 minutes of leaving a message for the NMDP, a kind woman called me back. She sounded excited to have a new donor. I had to break the bad news to her that I had an important question first, one that could put me out of contention. I told her about my cancer. She responded that, unfortunately, I would need to be "deferred" from the program. In other contexts, I understood deferred to mean delayed. Was this what deferred meant in this context too? I asked the woman if she meant that I could never donate my bone marrow. She said that was correct -- anyone who has received chemotherapy or radiation can never donate bone marrow, for your good, and for the good of a potential recipient.

When I hung up the phone, I felt rejected. Like my bone marrow wasn't good enough (because it wasn't). Then I remembered that getting on the bone marrow registry was not about me feeling good or bad about myself. It was about sick people finding the life saving match that they need.

Still, I felt like damaged goods. To make myself feel better, feel useful, I decided that I'd try to find one person that would get him or herself onto the registry to fill the theoretical spot that I couldn't stand in. I didn't know how I'd do this but I decided not to use my blog for that purpose. I don't enjoy being preached to about the same thing over and over and I didn't want this blog to start to feel that way. Then I put the issue in the back of my mind because I had to get to work.

When I sat down to write this blog tonight, I started my first paragraph with the news that I was, in fact, correct in my initial instinct that people don't want my blood, platelets, or bone marrow (although Sean did confirm that I can donate blood and platelets in five years). As I was writing, with no real idea where I was headed (like usual), I got an email from Rachel. She was writing about the bone marrow registry.

It was clear from her email that Rachel had done her research. She told me facts I never knew -- for instance, that the cheek swab gets a person in the bone marrow donor registry but only one in 540 people in the registry will ever be a match, and thus, be asked to actually make the donation. Then she told me that she just signed up for the bone marrow registry. She told me that she never would have done it if it weren't for me. I told her that I never would have thought of it if it weren't for Mom.

Rachel and I pretty much never talk about my cancer but tonight when I called to give her the heads up that she'd be featured in this blog, we talked for a few minutes about it. I asked her if she'd be OK with me writing about our pact. She said, Of course, as long as you don't make me sound like a big jerk. I don't think I could do that because she isn't ever a big jerk.

The truth is that Rachel shaving her head wouldn't have helped me. If it would have, I know Rachel would have shown up on August 8th with no hair. I can see how the gesture could help others, but the whole hair thing just isn't a big part of this journey for me. Rachel shaving her hair off would have been needless drama for both of us and we definitely don't need needless drama right now.

I love my sister because she adds value where value needs to be added. When we were kids, we must have thought that matching shaved heads would prove how much we love each other. But now we're older and it turns out I don't mind being bald and Rachel likes her hair extensions. It also turns out that Rachel, even from Virginia, still has the uncanny ability to know what I'm thinking. The only thing that could have made me feel better after I heard that I could never donate my marrow was to find someone else who could. Thanks to Rachel, I didn't even have to go looking.

A wonderful Canton mother that I met through Brian's hockey team left a poignant comment on my Frank blog today. Until reading it, I had no idea that bone marrow transplantation will hit her family so close to home. I also had no idea that siblings have a 50% chance of being a perfect match for each other. I hope I never need Rachel's bone marrow, but I'm thrilled to know that if someone else does, she is ready for them. And I can't help but smile at the fact that her marrow may be identical to mine.

Frank

I think that cancer patients are kind of like pregnant women, and guys in the weightlifting section of the gym -- we try to be subtle about checking each other out, but we check each other out nonetheless. At first, when I found myself doing it, I thought I was the only one. I'd be in the elevator or in a waiting area at Dana-Farber and I'd find myself trying to see which person in a dually-hair-covered couple was wearing the patient bracelet or the little yellow clip-on device that tracks the patient's location in the building. Is he the one with cancer or is she? Boy, she looks great if she's the sick one! Other times, I'd find myself peeking over at someone trying to decide if her hair was coming in or going out, and if she was a breast cancer patient like me. Of course my curiosity was pointless and probably immature, but I was OK with that.

The funny thing is that other people can't help it, either. In fact, judging by the looks I get when I'm at Dana-Farber (and even more so, when I'm not there), I think I throw people off a bit. My build is still somewhat athletic (if my stomach is covered up -- which of course it always is) and I don't think most people are used to seeing someone that looks healthy also look like they have cancer. But I don't mind the stares, because I'm busy giving my own right back.

When I spoke with Dr. Bunnell's office this morning to schedule my labs, I chose the last appointment they had so that I could get as much work done in my office as possible. My Mom picked me up at 4:15 and we were at my 4:40 appointment right on time. When we walked into the waiting area of the lab, we were shocked that it was completely empty. There was literally not another patient in sight despite that dozens of people usually pack that room. What, did they find a cure to cancer or something? I wondered. Unfortunately, they hadn't. 

It took no more than five minutes for the nurse to draw my labs and I was done. They would call me in 30 minutes to tell me the results. We headed down to "P1" to turn in the valet ticket that we had only just received. We set a personal record for the speediest medical appointment yet -- proven by the fact that the cost of the parking was $0. 

As we waited for the valet people to retrieve our car, I noticed a fellow patient in the waiting area. I did my subtle staring-like glances while pretending that I was busy thinking of something else. The first thing I noticed was that this man was thin. Really thin. He had a thick head of straight hair, mostly brown, with some streaks of white. I couldn't tell how old he was, mostly because I couldn't decide if it was age or sickness that had worn out his face. If I had to guess, though, I'd peg him at around 45. Forty-five, but thanks to cancer, looking more like 60. I never caught this man's name, but I'll call him Frank because he looked like a Frank to me. He never got mine either, and I wonder what name he'd call me if he had to choose one. Sarah? Yeah, maybe I look like a Sarah. 

Anyways, the valet guys were clearly having trouble finding or retrieving our car so we continued to wait. I could feel Frank looking at me but I figured he was just checking out my cancer situation, like I was checking out his. When Frank spoke to me, I was surprised because I wasn't used to moving beyond awkward stares. 

When Frank spoke, I noticed that his teeth were a bit rotted. Maybe 50, then, I decided. Frank excused himself, then asked me if I shaved my head before my hair fell out or if I let it fall out on its own. He explained that he is undergoing a bone marrow transplant on March 8th and that he will get heavy doses of chemotherapy as part of his treatment. He was trying to decide what to do about his hair. 

I told Frank that I had shaved mine and that it worked well for me; that I would have found it really hard to see my hair fall out in big clumps. Frank listened closely to my answers, but there were definitely two layers of our conversation. The first layer was the one on the surface -- the words we were saying to one another. But it was the second layer of the conversation, the invisible one, that meant even more. 

My Mom felt that second layer too and we talked about it when we got in the car. We both noticed that more than anything, Frank wanted someone to talk to. He had come to Dana-Farber alone, but I don't think that he wanted to be that way. That made me sad, as it always has. 

At the same time, I was totally amazed by Frank. After he mentioned that he would be getting a bone marrow transplant, I congratulated him on having found a match. What great news, I remarked, and Frank agreed. I asked him if the match was a relative. No, it's a stranger, he explained. In fact, Frank's brother was only a 4/6 match while this perfect stranger was a 6/6. Frank described seeing the chart comparing him with his donor match and he said they were identical. Un-freaking-believable. We talked about how amazing it is that a perfect stranger will give his or her bone marrow to Frank in just a few weeks. Frank explained that he would "be in a pine box without it." I love boxes, but I really hate thinking about ones made of pine. 

Our car arrived just after Frank's did. He and I shook hands and wished each other the best. I'll be thinking of Frank on March 8th. 

On the ride home, Danielle called to tell me that my platelets looked fine. I was enormously relieved. If I needed platelets now, I figured it could be a problem that would linger until my Herceptin is done in October. But after speaking with Frank, I wasn't going to complain because even platelet transfusions through October seemed simple compared to a bone marrow transplant. 

I'm certain that I'll never see Frank again and he'll never read this blog. But those five minutes my Mom and I had with him will stay with me forever. Frank's tangible appreciation for a stranger's bone marrow will stay with me forever. 

At first, I thought that I should excuse myself from donor registries, not so much because I'd been through enough, but because I figured that I probably didn't have anything that other people would want. That's silly, though, because it's only me playing doctor again. For all I know, my bone marrow is just fine and could save someone one day. So tomorrow, I'll call Sean at Dana-Farber and see if my bone marrow would make the cut. I know that my boobs are as fake as they come, but maybe -- hopefully -- everything else is still good for the taking. 

Relax

Today, after four days of the inside of my mouth bleeding every time I eat or brush my teeth, I decided to send a message to Dr. Bunnell's office. At this stage, I'm not sure if I should contact my PCP for stuff like this, or call my oncology team. Since I want to rule out any cancer-related reasons for this development, I opted for the group that could make those calls the fastest.

An hour or so later, Danielle responded and told me that my mouth troubles could be some residual effect of the chemo. To be honest, I don't really believe her because I feel like the chemo has been out of my system for weeks now, but I often think that I know more than my doctors and I always end up being wrong.

Either way, Danielle wants me to come into Dana-Farber tomorrow to have my platelets checked. I know, you're going to think I'm making this up -- like it's some pathetic ploy to get you to take my mother up on her platelet donation offer. Trust me, I couldn't make this up if I tried. I guess that's what I get for writing about my "sacred" time at Dana-Farber -- another unplanned trip there.

I'm eight weeks out of my last chemo treatment and two weeks out of my last Herceptin infusion. Aside from the lingering pain in my right arm along the still-bruised vein, my symptoms have been non-existent. I can feel my fingers and my toes, I'm not nauseous or achey, and I haven't had a nosebleed since January. Seriously, I feel great.

My hair is coming in fast and 50% of the time, that fuzz feels like soft proof of my sweet victory. Forty-five percent of the time, I don't really care about my hair one way or the other, 3% of the time I think that I'll miss having hair (or no hair) that was so easy to care for, and the last 2% of the time, I have bad thoughts. In those 2% moments, I have thoughts as dumb as -- If my hair can grow back this fast, does that mean that cancer can too? I hate my brain sometimes.

My hair eight weeks after my last chemo infusion.

Since I'm on the physical update theme, I'll run with it and spend a few paragraphs giving Maggie credit for two things that, back in January, she told me may happen to me after my chemo was done. First, she told me that my eyebrows could still fall out. I didn't think mine would fall out at that point if they hadn't already but low and behold, she was absolutely right. A few weeks ago, I noticed a dramatic change in my eyebrows as they faded away. I still have some semblance of eyebrows, but they're pretty weak. My eyebrow powder has become my favorite item of make-up although I don't brush it on every day (apparently I can't spare that 60 seconds every morning). I realize it must be strange for people to see me with eyebrows one day and without them the next but I like to keeping people guessing.

The second thing that Maggie told me about happened to me last Friday. Wendy had come into my office so that we could walk over to the federal building for an appointment regarding her employment authorization documents. On our way back to my office, we passed by a group of men outside the New England Center for Homeless Veterans. There were about five or six men standing in a loose group smoking their cigarettes. When Wendy and I walked by, one of the men -- a middle-aged black man -- yelled in my direction, "Hey, I like your haircut!" I turned to look behind me but no one was there. "I'm talking to you!" he said smiling at me. "I like your haircut!" he repeated, eyebrows raised, as if I should have caught it the first time. I had a split second flashback to Maggie telling me that when her hair started to grow back, black men would often tell her that they liked her "haircut." Then I started laughing -- one of those laughs that you just wish the other person was there with you to enjoy. The compliments didn't stop there, as a few other men -- each of them black too -- remarked on my haircut. I won't lie; I loved those compliments.

Of course I told Wendy the whole story about what Maggie had told me and why I got such a kick out of the mens' comments. She laughed with me and let me take a second to text Maggie. Then she told me that in Africa, my haircut would be totally normal. No one would even think you are sick, she explained. Neat.

Onto another topic. I have a general rule that talking about body weight is absolutely pointless. But I do want to mention something about it in this physical update context. In the few months after I was diagnosed, I lost weight -- over 15 pounds. I lost weight mainly because I was too sick-to-my-stomach with worry to eat enough, but also because I started to avoid sugar in order to starve the tumor and it turns out that if you don't eat sugar, you can't eat lots of yummy fattening treats.

If someone asked me before cancer if I'd like to lose 15 pounds I'd have said yes. But once it happened that way, I hated it. I felt sick and frail and not myself. Aside from the 60 pounds that I gained when I had Teddy (yes, 60, that wasn't a misprint), and the 45 I gained with Annabel (at least keeping me lighter than my husband), I have always been a pretty consistent weight. Dipping too far below that made me feel like I was losing part of myself. It scared me.

Now that I've gained most of that weight back, I feel good. I feel like myself; like how I should be. I write this now just in case someone out there ever shares the worry that I had after my diagnosis that I'd never be able to eat like a normal person ever again. Rest assured, I'm right back to trying to resist my fourth piece of pizza because really, three should be enough.

Lastly, I've watched a funny thing happen to my fingernails. I could be making stuff up, but it seems as though chemo put a sort of dent in each of my fingernails around the same time. It looks like this:

I have slowly watched the dent move up my nails and I figure it's a few weeks away from being gone altogether. I couldn't care less about my nails and I'm sure you couldn't either, but my dented little fingers keep typing anyways. Like this story that they seemingly want to spell out ...

On our honeymoon, I got my first and last pedicure. It was in a windowless room so I was already feeling claustrophobic and fidgety by the time I sat down. A young woman came over and I tried hard not to find it strange that she was touching my feet. I tried to make conversation to distract both of us. After five minutes of me painfully trying to keep up that conversation, the lady handed me a magazine and told me to relax (with a Please shut up tone rather than a Please enjoy yourself tone). I told her that I wasn't good at relaxing. She just made one of those Humf fake laughing sounds and I could tell that we were as bonded as we were ever going to be. After that experience, I deemed myself no good at pedicures.

Since we've covered the physical update, we may as well move to the mental one. I could sum that up pretty easily by describing what goes on in my head every time I see blood on my napkin. Goodness no! I must have gotten that type of cancer that you can get from chemo. It's OK though. Robin Roberts got it and she looks great. I'll just need some bone marrow. Gosh I hope I can find a match. Rachel's got to be a match right? I know, it's crazy, but it's the truth.

Today I told my Mom about my crazy thoughts, which was a really selfish thing to do because it was her birthday. But I was a bit too worried to care about being selfish, which stinks. Anyways, a while later, my Mom called my office back. She told me that she had done something we never ever used to do. She Googled my symptoms. I couldn't believe that she garnered that bravery, and I remarked on that before I even heard what she found out.

It turns out that my Mom found a patient board that included lots of different comments about women's mouths bleeding while they were on Herceptin. Excellent news! Wait -- talk about selfish -- that didn't come out right, but you know what I mean.

This is a tough stage for me because I attribute any little pain, or any little feeling out of the ordinary, to be cancer. Headache? Cancer. Tickle on my numb boob? Cancer. Hair growing back? Cancer. Urgh. Cancer really can be a terrible terrorist.

You know me enough to know there's no way I'm ending a blog with a sentence like the previous one. That's just bad karma. So instead, I'll emphasize my favorite part of this story...

Today I wrote out my Mom's birthday card. Among other things, I told her that she is the strongest and bravest woman I'll ever know. She really is, for lots of reasons. But today, it's because she found the courage (that I still don't have) to enter some search terms into Google and scroll through the results. Those results put my mind at ease.

Of course, Google can't do it all, so my Mom will still find a way to join me at Dana-Farber tomorrow for my platelet check. We'll sit together in multiple waiting rooms and she'll patiently listen to me as I blab away about something -- probably Teddy or Annabel or Writing Saves Lives. I'm so lucky to have her. And I'm so grateful to know that she'll never hand me a magazine and tell me to relax. Because I think she knows that me blabbing to her is the best form of relaxation I'll ever find.

Additional Call on "Call to Arms"

If any of you amazing platelet donors out there would be willing to write a short guest blog about your experience, that would be excellent!  Please leave me a comment below or send me an email at tarashuman@mac.com.  Thank you all for even considering this life saving donation!

Call to Arms

Tomorrow is my Mom’s birthday. Some time ago I asked her what she wanted for her birthday, and besides the obvious, “An instantaneous cure for cancer,” she said, “I would like you to post something on your blog.”

I had absolutely no idea what she wanted to post or why. Of course, I agreed, but I got her a gift too -- a silly little art figure made out of old tin cans. I know, it sounds odd (and it is) but we found it at an art show a few months ago and it's really cute.  

This morning my Mom emailed me the paragraphs below and asked that I post them. She even came up with the nifty title on her own. I was very impressed!

After I read her text, I was speechless. An hour later, all I can say is this...

Birthdays have quickly taken on a much deeper meaning for me -- my kids' birthdays, my parents', others', my own. Before cancer, they seemed mostly about meals, cakes, balloons, and gifts; about to-do lists and a few fun hours of a family party. Now, they're still about those things because those things are still delicious and so much fun. But now, birthdays are also about something much more -- something kind of sacred. 

Another thing that has become kind of sacred to me is my time at the Dana-Farber Cancer Institute. I know that sounds odd, because it's not a place you'd think that I would like to go. You're right -- I don't necessarily like to go there. But every third Wednesday when I go there for my infusion (with my Mom), I'm so grateful to be there with her, and with such hope and faith that I will be cured. I will forever credit that place with saving my life, and I am thrilled that my Mom's idea could bring some of you to a place that means so much to me. 

(Also, I wrote a bit about donors back in October in a blog linked HERE. It's so weird, and neat, to read this post months later. Little did I know what adventures were still in store!) 

So now, for once, I'm going to shut up and let someone else talk. Happy Birthday, Mom ... Here is your post.

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Call to Arms

Written by Anne Lang

Over the past seven months the question and answer I heard the most is, “And your birthdate?” Tara’s response, “3-10-1980.” Typically before, during, or after this exchange I would be reading one of Dana-Farber’s publications. One magazine covered the story of a Dorchester resident, Eric Hall. Mr. Hall has donated blood platelets 24 times a year for over 27 years. He has just made his 583rd donation. Yep, you read that right! And then another publication commented about how Dana-Farber had a shortage of blood platelets. And then those two thoughts -- Tara’s birthday in March and Dana-Farber’s need for blood platelets -- fused. What more meaningful gift could we give Tara than a blood platelet donation for a cancer patient in need.

So, I called the Blood Platelet Donation Center and I spoke to the most helpful and caring Dana-Farber staff member, Sean. And Sean said he would be more than glad to help orchestrate donations in Tara’s honor. For those of you who would be first time donors, Sean would do about a ten minute pre-screening over the telephone to make sure that you are eligible to donate. Then if you are good to go, Sean will schedule you for an appointment to donate. First time donors can only give during the following hours: 7:30 a.m. to 4:00 p.m. Monday through Thursday and 7:30 a.m. through 11 a.m. Friday. Typically the Donation Center can only take about 2 first time donors at a time. It takes about an hour and a half to two hours to donate (think of Eric Hall). The donation center is located at Dana-Farber on the first floor of the Jimmy Fund building at 35 Binney Street.

If you are interested in making a blood platelet donation here is what I suggest. Find a buddy to go with you (that it will make it way more fun), and then call Sean at 617-632-2249, let him know you would like to make a donation in Tara’s honor and the process will be set in motion. Sean said there is a lot of availability beginning March 13 so you should be able to get a time that works for you. For those of you who are reading this blog and live out of state, you could contact your local cancer hospital and make a donation there. I know the hospital would be ever so grateful.

Thank you for giving this life saving birthday present.

Eric Hall -- master platelet donor!

Another Angle

About a month ago, Brian and I took the commuter rail into Tufts Medical Center to visit his Grandma. I've mentioned this trip in a deeper context, but this time I mention it in a really light one. Because riding the train with me, Brian looked like a lost little pup at my heels.

I have an atrocious sense of direction so I'm used to Brian leading the way when we go anywhere. Next to him, I don't look like a lost pup, so much as a loyal one. But this day, it became immediately apparent that I was in charge. If I hadn't been there, Brian certainly would have gotten himself to Tufts, but it just would have taken him longer and he would have looked a lot more confused. 

On this trip together, I realized that without even knowing it, my years of commuting into Boston have taught me lots of little tricks about that ride. For instance, I know the rush hour schedule by heart, I know which trains stop on which platform, and I know that sometimes, when the trains are late, it's best to wait atop the catwalk so as to leave open the option of catching the late train on one platform or the next train on a different one. I've learned where to stand on the platform depending on where I'm getting off (if Back Bay, I board the train at the back, if South Station, at the front), and how to connect to the Orange or the Red Line, or no line if the weather is nice. The ParkMobile app totally changed my life and the Where's My Rail app, while not always totally accurate, is pretty useful, too.

Teddy and Annabel are relatively seasoned commuters and they both love the train. When I returned from maternity leave with Annabel, it was the beginning of June. Teddy's school had already let out, and Brian's wasn't done for a few weeks. Luckily, Ropes provided "back-up day care" -- you know, so that our kids were never an excuse to miss work. Just kidding, sort of. But seriously, it was a great benefit and the Bright Horizons on Stuart Street in Boston is incredible.

So for a few weeks, Teddy, Annabel, and I rode the commuter train into Back Bay together. Teddy, being Teddy, wasn't going to let his schedule get switched up that easily so we strategically couched those few weeks in terms of summer camp. I called it, "Boston camp," and Teddy, surprisingly, ate that up. So with my work bag, Teddy's bag, Annabel's pre-made formula bottles for the day, and probably about 30 pounds of other crap, we trucked into Boston together on the train. Annabel snuggled in the Ergo against my chest and Teddy held my hand because despite that he loved the adventure, it still made him a bit nervous. Sometimes I felt guilty that I liked that side effect of his nervousness so much. 

Commuters like me quickly learn the personalities of the conductors based on how they collect tickets and instruct passengers to board the train. I marvel at the conductors who say a sincere Thank You every time a passenger flashes a Charlie Card or hands over a pass to be hole-punched because that's a heck of a lot of sincere Thank Yous in a day. I also wonder about the grumpier-looking conductors that don't say a word when they come around. Are they really as miserable as they look? 

The conductor in charge of the last few passenger cars of the 8:01 train from Canton Junction isn't ever grumpy. In fact, he seems amazingly content in his work. Every morning, I look forward to him announce when the train pulls in -- "Quiet cah to your left, party cah to your right." I smile every time. 

Last week, on the train back from Boston, our conductor was one of the seemingly unhappy ones. When he came around to take our tickets, he asked the young girl sitting next to me where she was headed. 

"Uh, Providence," she replied. 

"This train doesn't go to Providence. Get off at 128," the conductor told her, barely pausing by our row, and clearly sending the message that she wasn't going to get any more help from him. Her nervousness was palpable. 

I dug through my bag for my paper train schedule. Despite the MBTA apps, the paper schedule is the best when it comes to these types of situations. 

I showed the girl the schedule and we worked out what she needed to do to get to Providence. It was a bit confusing because the next Providence train didn't stop at 128 and the next few trains that did stop there only went to Stoughton. This young college kid clearly didn't know the area so I explained to her the layout of 128 station and where she could sit and wait for the next Providence train. She got off the train still nervous and a bit upset, but definitely less nervous and less upset than she had been when the conductor pointed out her mistake. 

A few days after that, another young passenger close by made a similar, but in my mind a bit less understandable, mistake -- she got on the wrong line altogether. I'm always a bit surprised when people do this, because the trains are pretty well marked and the conductors yell or say over the intercom, "Train to Stoughton," or "Train to Providence," about 20 times while the passengers are boarding. But I'm not judging, because I do lots of stupid things that must make people wonder. 

Anyways, although I had overheard her problem, this girl wasn't sitting next to me. We were in the same row, but I was on the left side of the train and she was on the right, with an aisle and another passenger between us. As the befuddled passenger tapped around her phone trying to find answers, I glanced over to see if the passenger between us was going to help her. She didn't. She just continued with a game on her phone. 

I learned a lot about myself in those next five minutes. 

I started to get anxious. Should I lean over and offer to help this girl? Am I being nosey and annoying if I do? I could easily just show her the paper schedule and explain to her how she could get herself back to South Station to connect to the right train. That would probably really help her out. But how could I get her attention? That will be awkward. Maybe I'll just sit tight. No, she looks upset. I'll say something.

If I was sitting next to her, I wouldn't have hesitated to help, but I felt like the passenger between us was the assigned teacher for that ride, so to speak, and I would be breaking the unwritten rules of the commuter train by leaning over to play substitute. 

As the train neared 128, I decided, What the Hell? I leaned over and asked her if she needed help. She said she was trying to get to Middleboro and she got on the wrong train (so, I'll call this girl, "Middleboro"). The girl between us looked up, as if her role as teacher had just dawned on her (maybe it had), and she joined our conversation. 

In the end, I didn't help Middleboro much at all. Rather, the girl between us explained to Middleboro what she should do, where she she wait, when the next train would come. Middleboro got off the train at 128 just like my Providence-bound (or not bound) friend had -- nervous and a bit upset, but less so, because someone had helped her out.

These five minutes are another small angle of the birth of my Writing Saves Lives idea. 

I sometimes think that I have the most trouble writing about (and even more so, talking about) the things that I understand with the most clarity. For instance, I'll never forget over a decade ago when I had to plan my answer for upcoming job interviews about why I wanted to be a teacher. I couldn't explain it because I just knew it; knew it with every bone in my body. There was so much clarity and certainty in my reasons that I didn't even really consciously know them. 

Those five minutes on the train, so many years later, helped me understand it a bit more, though. Maybe some people see it as nosey or bossy or annoying, but I can't help it -- if my life has given me some bit of experience or information that I think could help someone else -- could make them feel something good or great, or could make their ride just a bit easier -- I can't sit still until I at least offer up the opportunity for those "someone elses" to have that good stuff, too. I remember it so clearly when I was teaching -- if I found a photo or a story or a history lesson that fascinated me, I could barely sleep at night in eager anticipation of sharing it with my students the next day.

At the same time, I don't like to force things because I know only some people will appreciate them. Luckily, I'm actually fine when people think my ideas are dumb as long as they're relatively nice about it. Because sometimes my ideas are really dumb. But other times, I believe in them so much that even if others think they're stupid, I don't care at all. I'm going ahead anyways.

Last week, that girl sitting between me and Middleboro taught me something else, too. At first, I was pretty mad that she could just sit there with her stupid game and not lend this girl a hand. I subconsciously labeled her a selfish jerk. But it wasn't that simple and my judgment was pointless, and probably, wrong. After this girl noticed that Middleboro needed help, she helped her way more than I did. 

As most of you already know, this space has been as much a part of my treatment, my coping, and my healing as the powerful medicines that have been pumped into my veins. Part of me thinks I've learned a few things through this space that could somehow help others -- and I don't mean only others with cancer. In fact, I don't want this next step to necessarily be about cancer at all. In the end, I'm also not aiming for others to start a blog (although they may) or take pictures of their boobs (that could get weird fast). There are all sorts of creative ways this could go.

Ultimately, I truly believe that writing could help some people -- all over the world -- even if, like me, they never fancied themselves a writer. That writing doesn't have to be serious or deep, and it definitely does not need to be (and hopefully will not be) motivated by something like cancer. Instead, I want this effort to be motivated by self-worth, love, and a whole lot of fun energy. With that, Writing Saves Lives could help people see that something like cancer isn't what defines us. Rather, it's the tiny little moments in our lives that teach us, and others, about who we really are; and I mean moments as tiny as sitting in the same row as someone who got on the wrong train.

A Few Feet of Vision

After my last Herceptin infusion, I met with Dr. Fasciano. I’ve started to call her “my therapy lady" because I really don't know what else to call her. Calling her "my therapist" makes me sound like I have a lot more money than I do, and truthfully, insurance somehow covers these appointments. I also have always assumed that people go to their therapist to dip their feet into a problem, wade in slowly and carefully. But poor Karen; I don't dip or wade or enter into our meetings slowly or gracefully like I see in the movies. I try to, but I think Karen has this spell over me so that when I see her, it's more like the end of a game of Connect Four. 

 

Have you ever played that game? My kids haven’t, but they’ve dropped the little yellow and red chips into the blue fence thing a thousand times. At the end of the game, once all the pieces are lined up in the holder, you release the bottom and all of the pieces fall into a mess on the table. There's no slow or neat way to do it, at least, not that I know of. 

That’s me with Karen. I walk into the consultation room on Dana-Farber's Yawkey 9 with all of my pieces lined up. Those pieces aren't necessarily in order, but at least they're in place. But when Karen shuts the door and sits down, I feel like someone released the little lever on my mind and a million little pieces fall into a messy heap at her feet.

Talking to Karen is so liberating because I don’t feel like I need an edit button with her. I can dump any thought on her, no matter how dark or scary, and I don't have to worry that it's is going to make her sad or fearful, or that it will keep her up at night like it may keep me. I don’t need to worry that she’ll worry.

Of course, this doesn’t mean that Karen doesn’t have feelings because I know that she does. It’s just that I'm sure (unfortunately) that Karen has had so many pieces dumped, placed, or even thrown at her feet in those consult rooms at Dana-Farber that my pieces won’t cause any particular effect. I would be so awful at doing what she does. Five minutes in, I'd be sobbing and my brave patients would be counseling me.

Anyways, last time I met with Karen, I think I know what she was thinking about ten minutes into the appointment. Listen, girl. If you’d ever just stop talking, I think I could help you. But I couldn’t stop talking. I told her about Teddy and some trouble he’d been causing at school. I told her about Grandma Kosta and Brian and his eulogy and all that Brian’s mom had done for her. I talked and talked, as if no one would ever listen to me ever again.

The time before that also included a heck of a lot of Tara talking, but I cried some too. That day, I dumped a whole lot of heavy and confused pieces into the pile -- I told her about how scared I still was sometimes, and about how hard I thought it was to come out of the crux of my treatment. What's so great about Karen is that she doesn't try to connect all the pieces back up in 50 minutes. Instead, it's like she tries to look at just one or two of the pieces, and tries to find the right place for those few pieces so that ultimately, they can all line up better.

In our second to last meeting, I told Karen about my writing; about how much it means to me. I can’t remember if she asked me why it means so much or if by that point, I was literally asking myself questions and answering them. Either way, I remember exactly what I told her. Because if I die, my kids will know me. It wasn't the only reason, for sure, but it's what I first blurted out with that edit button shut off. It's a total bummer of a thought, I know. But that was me for the first 20 minutes of that therapy lady session -- being a total bummer.

I’ve written before about how this blog is like a sort of life insurance policy for me; a way of having an ounce of control over a universe that is uncontrollable. Every time I hit Save on a blog, or better yet, when I Publish, a little part of me gets pressed into stone -- just like those dinosaur fossils that Dr. Scott the Paleontologist teaches us about every morning when we watch Dinosaur Train. Those fossils make me feel better. Ironically, they make me feel alive. They save my life. Both literally and figuratively.

This is where the idea that I wrote about earlier this week begins -- at the concept that writing saves lives. I know it may sound depressing when I put it in this context, but that context is just one of the many angles of this prism, and I'll write about others soon enough. Ultimately, I promise that the concept is a joyful, fun, and very uplifting one. 

Writing Saves Lives. It's my vision and small pieces of that vision are becoming clearer and clearer every day. Like Anne Lamott wrote in the last quote I shared -- I can't see more than a few feet in front of me. But that's OK. Because I really do see and hear and feel those few feet. And they look bright, sound beautiful, and feel absolutely awesome. 

Good Words: Destinations

E. L. Doctorow once said that "writing a novel is like driving a car at night. You can only see as far as your headlights, but you can make the whole trip that way." You don't have to see where you're going, you don't have to see your destination or everything you will pass along the way. You just have to see two or three feet ahead of you. That is right up there with the best advice about writing, or life, I have ever heard.

-- Anne Lamott (in her book Bird by Bird)

An Idea is Born

This morning as my commuter train pulled into Ruggles station, I had an idea. Not just any idea. But an idea that has my heart bursting with excitement. (Now feels like a great time for that 20 questions game.)

As the train emptied a bit and continued onto Back Bay, my mind was buzzing, faster and faster. I felt like Jerry Maguire, although I wasn't doing handstands in my underwear (weak joke -- will only make sense to those who have watched the movie as many times as I have, which is probably no one; regardless, Tom Cruise in his underwear is never a totally wasted thought). Back to the story...my mind was buzzing. Classroom? Where? No, at people's houses. No. Definitely classroom.

I don't remember exiting the train, but I do remember watching my boots as I doubled up the steps at Back Bay and doubled down another set to catch the Orange Line. It would last one year. No, we would want to be done by Christmas. Yep, done by Christmas would be perfect. Then the next one would start in the New Year.  

As the subway chugged along, I itched for a pad of paper or a computer screen -- a place to scribble the thoughts that were bubbling over in my mind. Could I find five people in the area that would be interested in my idea? Well, my Mom, Brianne, and Lauren make three. Yeah, I think I could find two more.

I'm surprised I didn't miss my State Street stop because I wasn't paying attention to anything besides that idea that had begun to take shape. 

By the time I got to my office, the idea had become a vision -- a real-life, I-could-actually-do-this type of vision. Forget that; rather, it had quickly become an I-need-to-do-this type of vision.

I checked to see if a certain website was available to launch my vision. It was. I bought it -- $12.99 -- annually for five years. I love that the idea doesn't even need a website -- it's not a money-making venture -- but Sean taught me that every legitimate idea deserves at least a website.

Dr. Bunnell told me that if I can be cancer-free for five years, the probability of recurrence drops significantly. Five years. Interesting.

And so today, a little dream was born. Tonight, I need to get working on it, and of course, my blogosphere friends will be the first to know all the details. In fact, if you so choose, you may be part of it. So stay tuned. I guess Valentine's Day is a day for conceiving. Ideas I mean. Sheesh, where's your mind today?

Happy Birthday Hockey Game

I learned to love hockey not so much by the reflexive property (a = a) but rather, by the transitive property (if a = b and b = c, then a = c). In other words, I love Brian and Teddy; Brian and Teddy love hockey; so therefore, I have come to love hockey, too.

Growing up in Canton, I always knew that people in this town thought that hockey was a pretty big deal. Some of my high school friends played and Brianne and I had fun going to games and cheering them on. But we both enjoyed playing our own basketball games way more, and it didn't matter to us that our crowd was one-tenth the size of the crowds at the hockey games (there was only a boy's team at the time).

When I met Brian in college, he was trying out for the hockey team. I remember how excited he was when he made it, because unlike most of the players at Bowdoin, Brian hadn't been recruited to play. When we started dating in our sophomore year, I felt obligated to go to the games. Don't get me wrong, the games were really fun -- it's just that I wasn't much fun at all. I usually wished I could watch his games on TV from the comfort of my dorm room (while I studied) but technology then wasn't what it is now. So instead, I joined the rowdy crowd in my own nerdy not rowdy way.

Our sophomore year, Brian scored his first goal. After the game, he asked me if I saw it and I told him that I had -- that it was a really great goal. Later that season I came clean on my terrible lie -- that I hadn't actually gone to the game, and therefore never actually saw the goal; that I used the time to study instead, so that I could have my work done before he freed up.

Turns out my little white hockey lies didn't stop there. When Teddy asks me after his Mighty Mite "games" if I saw his goal, I always tell him that I did -- that it was a great goal -- even though in reality, I can barely ever even pick him out of the crowd of little kids in the same uniforms. I don't feel too badly about this because I'm sure Brian will use similar little lies if Annabel ever does gymnastics or swims like I did. Did you see me stick my back-walkover on the beam, Daddy? she'll ask him after a gymnastics meet. Brian will reply something like, Yes, I did -- that was a great stick! But in his head, he'll be fishing through old Summer Olympics footage to try to figure out what the "beam" is.

*  *  *

Today, Teddy turned five. I thought about him all day; about this milestone for him, and, selfishly, for me. 

Last weekend, we joined one of our favorite families for a Providence Bruins game. It was Teddy's main birthday gift and he loved it -- that, and a new hockey bag with his name on it. Since the weekend's snowstorm pushed Brian's Saturday night game to tonight, we celebrated Teddy's birthday (again) at home last night for his favorite meal (aside from dinosaur chicken nuggets). Teddy ate four tacos and would have had another one if one was available. Still, I wanted to do something special for him on his real birthday so when Sean agreed to watch Annabel, I decided I could take Teddy to Brian's game. 

We don't usually go to away games, especially ones during the week, so this was a special treat. Teddy was so excited, and like me, he fought any feeling of tiredness. But truthfully, I think I was way more excited than he was (though probably equally as tired). A whole trip alone with my birthday boy?!? I couldn't wait. 

We chatted most of the way to the game -- he asked me lots of random things. When we passed the train station he asked me if I was taking the train to work again. I told him I was and I showed him the big pile of snow that the MBTA had assembled in the middle of the parking lot. He asked me when my hair would all be back in. Random question, I thought. Soon, I told him, then I returned a question to his court. Do you like me better with hair or without hair? With hair, he replied. Fair enough. 

When we got to the rink, he sat beside me. I don't know if it was that he was exhausted or if he has already figured out that I don't have the first clue about hockey, but for whatever reason, he was so quiet during the game. I tried to make some conversation but he just wanted to watch. For three straight periods, we sat beside each other and watched the game. I didn't need to chase Annabel around or make sure that she didn't fall through the bleachers. I didn't need to mingle with anyone, respond to emails, or check Facebook. I just sat next to my little five year old and watched a hockey game. 

Every now and then, I couldn't resist a bit of communication so I'd ask him which player had which number. In all honesty, I was trying to learn, and since Teddy knows almost every player's number, he was better than a paper roster. 

If I could really have my way, he would have sat on my lap for the game and let me hug and kiss him. But Teddy is not that type of kid at all. He likes his personal space so I left some between us. Of course, I snuck in a few hugs when I could, which is another reason why I loved when Canton scored a goal -- my son smiled and acknowledged me. 

While I sat there next to Teddy, I thought again about "stopping." And I realized this -- writing is my stopping. I knew as I sat there that I wanted to write about that game because I want Teddy to know one day what tonight meant to me; how much I loved a few hours alone with him in one of his and his Dad's most favorite places on Earth (a hockey rink). When I start to think about writing, I stop. I see everything, hear everything, smell, and taste, and feel everything. So I did that tonight. I never recommend the smelling part in a hockey rink, and the feeling part can be a bit chilly, but the sights and sounds are awesome. And most of all, sitting in silence next to my little guy was awesome. 

Obviously I'm no [insert name of hockey sportscaster -- I've got nothin']. But I thought Brian's team looked great tonight and both Teddy and Brian agreed. It was the first full game I've watched in a long time, and it was so much fun. The kids looked fast, smart, stubborn, and scrappy. I like those traits.  

Most of all though, those high school kids are so darn nice. They treat Teddy like their little brother, and for an oldest child, I know what that means. 

After every period, Teddy runs over to Brian and gives him a big hug. Then he waits while Brian talks to the team. When they take the ice again, Teddy (and usually the other coaches' kids) lineup to pump fists with the players. Those taps of sweaty gloves against Teddy's little fist mean the world to him, and so, by the transitive property again, they mean the world to me.   

I may not be able to find the puck on the ice half of the time I'm watching a game, but I sure did enjoy tonight. Teddy can go on thinking that me taking him to the game was a gift from me to him. But really, it was a gift from him to me. 

"I'll smile for a photo with my Daddy!"

"But with Mommy?!? Really!?!"

Now for the serious business...

Game time.

Next day addition:  As if Annabel knew the hockey fun that she missed last night, this morning she picked out this outfit. Maybe gymnastics or basketball doesn't stand a chance.