Sunday, September 30, 2012

Octobers

If you've turned on your TV or radio, or left your house any time in the last month, you probably already know that October is breast cancer awareness month. In prior Octobers, I remember being amazed by the efforts of so many individuals, non-profits, and businesses to raise awareness about this disease. I remember my town's high school soccer team wearing pink socks during games, NFL quarterbacks wiping their sweat on pink towels, friends asking for pledges for charity walks, and retail sales people offering me discounts in exchange for a donation. As I handed over my relatively small contributions, I remember thinking how lucky I was to not have breast cancer. And I hate the disease even more when I realize that in fact, at least during the most recent Octobers, the awful disease lurked inside of me, probably laughing an evil chuckle when it heard me think otherwise. 

Indeed, in October, breast cancer seems to be everywhere we turn. Of course, I only need to look down to see the effects of breast cancer, and that worried sick feeling is usually just a short thought away, if it isn't already in the pit of my stomach. Plus, I'm scheduled start chemo this Wednesday, October 3rd, and I'm guessing the side effects of that will give me a constant reminder of this dreaded disease. (With ambivalence, I am hoping I can start my treatments this week. However, I have been having a slight problem with the incision on my left breast and if it doesn't heal properly before then, Dr. Chun said I'll need to delay the chemo one week. My body may not be able to heal itself once the chemo starts so I need to go into this all scabbed up.)

Like chemo, I have some ambivalence about this October. On the one hand, it scares me. I feel like I have built a little cancer cocoon around myself -- I know what helps me and I know what brings me to dark places. For instance, I am still terrified to learn other breast cancer stories unless they are stories of wild success. Otherwise, along with the grief I feel for that family, at best, my mind will just stash that story away and one night or early morning, find it again, only to twist it into some tragic one for me. It's still hard for me to know that my cancer is more aggressive than other people's, because I start to wonder what side of a statistic I could fall. Then I just end up feeling like the most awful person in the world, and wondering if some higher being is ready to punish me for thinking of human beings on sides of a statistic (a statistic that I don't even know, by the way).

I knew I wasn't ready to talk to other women about their breast cancer but nonetheless, I engaged a conversation in the bathroom at Dana Farber last week. A middle-aged woman was washing her hands next to me, and clearly her hair was just growing back after chemo. I told her that it looked great because it did. She thanked me proceeded to tell me that she'd lost it twice, since that's how many times her cancer had returned. I wanted to run back in the stall and vomit at the thought that I could have to go through this all over again, and next time without the hope for a cure. Still, I smiled, dried my hands, and wrapped up that conversation. And I realized, I'm not ready for some things just yet.

It's probably no surprise that I am also enormously sensitive to any story about someone dying from cancer. And it's not something that's easy to avoid. Again, I feel so selfish trying to keep stories that are otherwise so important out of my little cocoon, but I just can't handle them right now. So in this selfish sense, October's going to be a tough one. Because I have to find a way to hear the words, "in memory of," and not have that split second of wondering if my name will one day complete that sentence.

So with that thought, I think we need a little pick-me-up, and the beauty of how far I've come in the last few months is that I really can pick myself up from those dark places. Sometimes, I can even let bad thoughts just pass right through my brain, never registering long enough to bring me into darkness. I have no idea if that's the effect of medication, but I'd like to think it's partly me. If it is the medication, we can't thank Zoloft, either. Now we'll need to thank Effexor. Dr. Bunnell switched me over last week. Something about a study (that apparently has been largely debunked) that Zoloft can somehow interfere with Tamoxifen. I couldn't really follow all he was saying, but I loved that even after he had already spent over an hour with us, he still pulled out the foot rest of the exam table to put his feet up and tell us all about it. And most of all I loved that even though he thought the risk of staying on the Zoloft was as small as "a spit in the ocean," he wasn't going to take the chance. Add him to the growing list of my life-saving heros.

Like usual, I've gotten off track, but back to October. Yes, I'm scared of it. But I'm also so sincerely excited and grateful for it. Because I honestly believe that Octobers saved my life.

I'm so predictable, but you know I need to insert a story. This one may even sound repetitive to anyone who attended the Bowdoin College graduation in 2002, because I spoke about it then. (Somehow I won the speech-writing contest and got to speak at graduation.) My Mom told me this story, and despite that we have no idea if it originated from any real event, we love it nonetheless:

A woman is walking down the street when she comes across three men who are laying brick. The woman asks the first man, "What are you doing?" and he replies, "I am laying brick." She asks the second man, "What are you doing?" He replies, "I'm building a wall." Finally, the woman asks the third man, "What are you doing?" "I'm building a cathedral," he answers.

I don't do any medical research in my little cocoon, but from what I have gathered from information I have not been able to avoid, Herceptin will save my life. Dr. Bunnell has explained to me that I got my type of cancer at the "right time," and I don't have to read between the lines to understand that if I had been diagnosed with this cancer a decade ago, I probably wouldn't have made it. That's why my Mom "prays to the Herceptin gods" every night.

I often send up a prayer to the Herceptin gods, too. But I spend more time thinking about bricks and cathedrals. I think about the scientists in a lab somewhere working on a complex theory about a protein, or a cell, or something else I could barely understand. I think about the high school biology students who will decide, I want to be a cancer doctor. These people have worked so hard and will work so hard, often feeling like they are laying brick. People like me may be a distant thought to them. But they are not a distant thought to me. Often, those nameless, faceless individuals are exactly who I think of when I kiss my kids goodnight.

Lately, I also think about Octobers. Because to me, one step at a breast cancer charity walk is not just a foot on the pavement. It's my daughter's fourth birthday. A pink sock at a soccer game is not just a change in uniform. It's my son's first at bat in little league. Tom Brady's sweat on a pink towel is not just cute. It's the champagne toast Brian and I will enjoy at the Spruce Point Inn on our 10th wedding anniversary. Every dollar that is handed over at Ann Taylor this October is another shopping trip I'll get with my Mom or my sister. And every second of attention that is paid to breast cancer this month is one more second that women like me will enjoy with the ones we love.

You may think that this October's steps and socks and dollars and time are just bricks. But trust me, they are not. They are breathtaking cathedrals, and over the last few decades, I didn't even know that so many people were busy building them. Now, for all that hard work in labs, and classrooms, and behind-the-scenes of charity events (among so many other places), I can only say, Thank You. And I mean those two words with every single cancer-free cell in my healing little body.

Friday, September 28, 2012

Dreams

My cousin, Tara, and I have a lot in common, besides just our first name. We both have two kids and a husband who we adore, and who, even in our craziest times, somehow love us back. We both have jobs outside of the house, and we both try to keep things in the house put together, even though we often feel like we're falling somewhat short of that. But regardless of our shortfalls, we both appreciate every day and we try to live life to the fullest.

Tara and I are different, too. One of the biggest differences in our daily lives is that Tara plays a huge role in caring for her mother, my aunt. Along with her two sisters (my other fabulous cousins), Tara does everything for her mother, including bathing her and keeping her company on days that my aunt is not at her "day care" (as Tara calls it). This is not easy -- it's a full time job, but my cousins would never speak of it that way. Without expecting even a thank you, they care for my aunt, day in and day out, because they love their mother, and each other.

One of our other biggest differences can best be seen at family parties. Tara is hilarious, and her stories make me laugh so hard my face hurts. Once she gets going, a crowd typically gathers around her and we all just listen and laugh as Tara entertains us with stories that make the most simple topics (like a real estate closing or buffalo wings) absolutely hysterical. I, meanwhile, enjoy family parties best if I can just sit back (or run around after my kids) watching and listening to all of the fun around me. I'd just flush and stumble over my words if someone expected me to entertain an entire table.

I really didn't know Tara very well before Annabel was born. I mean, I'd known her since I could remember, but I've come to realize that sometimes it's our very own family members we spend the least time really getting to know, and I hadn't spent enough time building a real friendship with my own cousin. Until one day in March of 2011.

I was on maternity leave with Annabel and after getting her kids off to school, Tara came to visit. We got to talking at my kitchen table and somehow the conversation led to me asking her, "So what's your dream?" I have absolutely no idea where this question came from because I don't think I've ever asked it in conversation before (although I wonder it with every person I meet). I want to be famous, she replied immediately. I was so taken aback that she had an answer to this question, never mind that she had it so quickly and so confidently. I may have let out a chuckle to express my surprise, but when I looked in her eyes, and at her face that had (for once) become very serious, I knew she wasn't kidding. So we talked more about this dream -- what she wanted to do to be famous. Tara wanted to entertain people. We kept going. We brainstormed ways she could do that and at one point, we decided to form our own business based around Tara's talent of making people laugh.

For the next few weeks, we brainstormed ideas about our new business. When my new baby napped, I researched all sorts of issues related to women who start small businesses. I caught the entrepreneurial bug -- that feeling of pure excitement that we could create something, bring it to others, and have it really mean something to those people.

Gradually, Tara and I realized that however we dressed it up, our whole concept was fundamentally based on Tara's ability to entertain. So one day I asked her if she would ever just get up in front of a crowd to do stand-up comedy. Forget our business ideas, the bottom line was that Tara was funny, and she needed nothing more than a mic to share her talents with the world. No way, she replied to my stand-up idea. She could entertain when seated at a table with others, when she could feed off of them, but she couldn't stand up alone and carry the show, she claimed. I fought her on this one. But she was adamant that stand-up comedy was not something for her.

Later on I talked to my Mom about this, because it bothered me that Tara was selling herself short. My Mom suggested that Tara take a class, like improv or stand-up comedy. I relayed the message, and watched Tara's eyes grow wide. Not more than a few days later, she had signed herself up for an improv class in Boston.

Tara faithfully attended her classes, with the constant support of her loyal husband who backed her even though it meant long stretches of her absence. We would talk every week about her classes and it was clear that Tara was the star pupil. I wasn't surprised in the slightest.

With the improv class under her belt, Tara decided to try the stand-up class. When she told me this, I reminded her of her own past words that she could never do stand-up, just to remind her how far she had come. Somehow between the hectic schedules of her two young boys, her job, her responsibilities to her mother, and countless other commitments, Tara plowed through almost every class this comedy school had to offer.

Now Tara has started to perform in all sorts of venues -- from local bars, to large charity benefits, to party cruises out of Boston Harbor. Instead of a gift-opening session at my sister's bridal shower, Tara performed a comedy routine about love and marriage, and she played host of the "Nearly Wed Game," which she named and designed based on the Dating Game. She had us all in tears of laughter, and Rachel and Matt will never forget the fun of trying to answer random questions about each other. Needless to say, Tara has worked so hard to hone her talents and it's all paying off. Tara is well on her way to her dream, and I couldn't be more proud of her.

Of course, through all of this, Tara didn't let me off the hook on my own dreams. But back in March 2011, I didn't have a dream to blurt out like she did. I was working 75-80 hour weeks before I went out on maternity leave and the closest thing I had to a hobby or a dream was a good night's sleep. Still, I gave it some thought, and finally I told Tara that my dream was to write. Not the quit-my-job-to-write-a-novel kind of write, but just write. Something, sometime.

Since Tara was doing everything to pursue her dream, I thought I should do the same. So I bought a desk. If I had a desk, I would write, I thought. Ha. We got a new computer for Christmas (my parents' way to encourage me to start writing, I think). I bought books on publishing my first book. And for this reason and others, I left big law for a firm I love; for a place where my co-workers have more time to enjoy outside passions.

But even with all that, the words were not pouring onto paper or my keyboard. As a small step, I entered a poem in my town's writing contest, and I won third place for my age group. (I told you it was a small step.)

Meanwhile, as I beamed with pride when I heard of Tara's successes with her comedy, I'd always return to the disappointment in myself that I was doing nothing for my little writing dream.

Some people think that everything happens for a reason. I respect that belief and hope it gives those people comfort. But personally, I don't really think that way. Rather, I think that life happens and we have an infinite number of ways that we can choose to react to the good things and the bad. Sometimes, with real tragedy, we just have to find a way to keep going. I have never experienced this type of tragedy with an immediate family member and those people who have are an inspiration to me, because I can't imagine the strength it takes to just keep going.

Most times, however, we can see something as a barrier or we can see it as an opportunity. As a student, we can doze off in class under the excuse that the teacher is boring. Or we can commit ourself to thinking and learning everything possible, even if the teacher should be better (and he or she should be better). At work, we can complain about our bosses or our hours or our benefits. Or we can have difficult conversations to try to improve the issue, and move on when that's not possible. We can blame someone else for a bad situation, or we can try to figure out our role in it, own some responsibility, and start to problem solve. "Everything happens for a reason" makes me think I am a pawn waiting for things to happen to me. Instead, I'd like to think that I will shape my own life and my own happiness based on how I choose to react to those things in my control, and most of all, to the many things out of it.

I started writing when I was diagnosed with cancer. Not because of any dream, but because I had something I wanted to say and it made me feel better. I don't think God made me sick so that I'd get moving on my dream to write. But I do think that I was given an opportunity. Maybe it was from God, or some higher being. Or maybe it just "bad luck," as Dr. Bunnell answered when I asked him how I got this. I have no idea, and that's not what really matters anyways. What matters is that as much as I hate so much of what has come along with my diagnosis, I've chosen to consider it as something more than just bad luck. Because in a crazy way, and without me even realizing it until now, cancer has made a dream of mine come true.

***

If you'd like to learn more about my cousin Tara Young, you can go to her website HERE or follow her YouTube channel HERE. She has a few videos up now, and I believe more are coming soon. (And fair warning, these wouldn't be rated PG. Tara always makes me think I need to lighten up on my more prudish ways.) 

Thursday, September 27, 2012

"Goodnight iPad"

I recently found this book in hardcover and got a kick out of it. Probably because Brian, Teddy, and I could recite Goodnight Moon in our sleep, and because Teddy and Annabel are already fighting over who can play with the iPad.

Tonight I'm exhausted, having today returned to a somewhat "normal" schedule of running myself to the ground. So, on this short note, goodnight gadgets. And goodnight moon.


Wednesday, September 26, 2012

My Allies

Some of my very fondest childhood memories were shaped at Atlantic Beach in Amagansett, Long Island, a beautiful stretch of sand and ocean surf, just a few miles from my Grandparents' house. As I young girl, I learned to play in the waves -- body surf, boogie board, empty my bathing suit of sand when no one was looking. My Dad, my siblings, my cousins, my uncles, and I would all play out there in the waves for hours. I remember the feeling of taking a deep breath before I dove under a breaking wave. After the strong rush of water above me, I would surface. We'd play, I'd dive under again, and I'd surface again, until we all decided it was time to ride a wave in for our "summer sandwich," Snickers bars, and other snacks at the Beach Hut. 

***

After this morning's appointment with Dr. Bunnell, we have a plan. I love plans, so I'm feeling great.

As Brian, my Mom, and I sat in the exam room waiting for Dr. Bunnell, I cried. It was one of those holy-shit-I-can't-believe-I'm-here cries. Tears that screamed, I can't believe I need to make these awful decisions. Tears that asked, How did this happen? How will I get through it? My cry only lasted about half a minute, then that was done, and when Dr. Bunnell came in, it was down to business. 

The tumor board came back essentially split on Option #1 and #2 (the least agressive and the middle-of-the-road aggressive options). Dr. Bunnell explained that one oncologist favored the most aggressive Option #3, but even that doctor also liked the sound of #1. So Dr. Bunnell felt very confident about Option #2. It's an aggressive approach, to meet (and beat) my aggressive type of cancer, but it's not the kitchen sink approach. Perhaps best of all, this option does not carry with it the cardiac risk in Option #3, and it's 12 weeks versus 24. The bottom line is that Dr. Bunnell believes that the most aggressive drugs would not provide me (and again, I am only talking about me) any real added benefit, while just creating more risks. 

I've been thinking about the William Deresiewicz passage I included in my "Solitude in Friendship" post. The one about being patient with an issue, considering it from all angles, outlasting my impulses. I think I've done that here, and I'm proud of it. My initial impulse was to go with the most aggressive Option #3. But after hearing from a board of the best doctors in the world, and after considering Dr. Bunnell's most expert and thoughtful opinion, I have absolute faith that Option #2 is the best one for me. And I won't look back. 

So this time next week, I will have completed my first chemotherapy infusion. It will be a three and a half hour infusion. I'll get one drug for one hour, the next for another hour, and the Herceptin for ninety minutes. Dr. Bunnell explained that they will monitor everything especially carefully on the first infusion, as most allergic reactions happen immediately. Every three weeks, I will come in for the next infusion. That's only four infusions over the course of the 12 weeks. Very manageable, if you ask me. The Herceptin infusions will continue every three weeks for an additional year. I like this plan. Because I really can see the road ahead of me.

Dr. Bunnell said I will lose my hair about two weeks after my first treatment. He explained that when it starts to fall out, it will fall out fast. I don't want to see that happen, so I'll shave my head the weekend after this one, just to be sure that I don't. To be sure that I beat the cancer to the punch. 

Yesterday as my Mom and I waited in Dr. Chun's office, I made some joke about chemo being poison. My Mom stopped me and said I can't ever think of it or speak of it that way. "It's not poison, it's life-saving chemicals," she said. So I renamed the chemo drugs -- now, they are my "Allies," my new little army, and I'm ready to welcome them inside my body. I wasn't ready before, and I wrote about last Friday night being one of the scariest of my life as I lay awake thinking of the drugs that would soon destroy parts of me. I shook at the thought of a poison killing my hair, dulling my skin, stealing my energy and my ability to fight a simple cold. But as usual, my Mom, and Brian, and the team at Dana Farber can make everything better. Tonight, I feel blessed for my Allies, and I'm ready for them to go to work on the enemy. 

On the night before my big appointment with Dr. Bunnel last week, I quoted from "The Best Exotic Marigold Hotel." Today, I realized the relevance of another quote from that movie. Evelyn was definitely not talking about chemo when she said this, but for me, it's perfect for this stage of my journey: 

It’s like a wave. Resist and you’ll be knocked over. Dive into it and you’ll come out the other side.

As I transitioned out of "surgery phase," and into "chemo phase," I've been scared of poison. I've resisted it, and I've been knocked over. But today, I named my Allies, and I'm ready to dive into this wave. I have no doubt I'll come out the other side, and even if it's without my hair, it's going to be with my whole life ahead of me. Oh yeah, and with an awesome set of new boobs.

***

P.S. I love this song, and thought it was a great addition to this post. I should also clarify that despite the "This is War" title, when it comes to real war, the album is actually about peace.


Tuesday, September 25, 2012

Inflation

At the risk of sounding like a bragging snob, this entry is about my pretty awesome new boobs. If you're not in the mood for boob-talk, check in again tomorrow. First thing in the morning, we will meet with Dr. Bunnell about the advice of the tumor board. And we will likely come to a decision about which chemo option will be best for me. So tomorrow's blog will be a bit more intellectual than this one. Because tonight's entry is just about boobs. 

I think there are two reasons why my boobs look so surprisingly good just about two weeks after they were removed and replaced. First, Dr. Chun is an incredible plastic surgeon. Seriously, she's amazing, not only because of the pure skill she possesses, but even more because she is so humble and kind to have said to me today that I'm the one doing the hard work. Emotionally, maybe. But physically, I didn't do anything but lie there unconscious while she worked her magic. For that magic, she's one of my heros. 

Not to downplay Dr. Chun's work, but the second reason why my boobs look so surprisingly good is definitely that they looked so bad before, they could only go up (literally). It's a crazy thing what having children did to my boobs (and I can only guess I'm not the only one) -- they got so big when I was pregnant and (being tortured by) breastfeeding, then they got so small afterwards, that they just kind of sagged there begging for some pep. Well, today came the pep. Let me explain. 

This afternoon when I entered the exam room in Dr. Chun's office for my third plastic surgery appointment since my mastectomies, I found the following set-up on the counter-top:


Hum, I thought. And how exactly is that going to work? I know I don't talk about clinical stuff much here, but this appointment was beyond fascinating, so I thought I'd share. 

After Dr. Nakhlis (another one of my heros) removed all my breast tissue, including my cancerous tumor, Dr. Chun stepped in. Through a large horizontal incision across each empty breast, Dr. Chun inserted a sort of little pocket, called a tissue expander, and she inflated it a bit. I guess the idea is that the tissue needs to be expanded slowly rather than all at one time, so the process to build the new breasts is a gradual one. 

Today was the next step. After examining the incisions, Dr. Chun took that little blue tool from the counter and began to run it across the top of my new right boob. A little magnet in the middle swung back and forth. When she hit a particular point, almost in the top-center of my boob, the magnet hung perfectly straight. Dr. Chun had found the "port" of the tissue expander. This was the entry point. Next, she took one of those huge syringes and stuck the thick needle on the end of it into the port. No joke, that was it; eerily similar to the hand-held pump I used to inflate Teddy's basketball. The large needle obviously didn't hurt since it entered where my original flesh no longer exists, but it felt strange -- kind of like a distant pain that my brain thought it would feel but couldn't. Then Dr. Chun just pushed on the syringe as saline filled the little pocket. Very slowly, I watched my boob grow. It was by no means drastic, but there before my very eyes it happened. Same thing on the left, and we were done. Un-freaking-believable. 

I see Dr. Chun again in two weeks so she can check my incisions once more and, if I so wish, inflate me some more. I think I'll stop here though. Don't want to get greedy. 

When my chemo is finished, I will return to Dr. Chun for a day surgery during which she will enter through the same incisions to replace the tissue expanders with the silicone implants. Once the scars heal once more, I can decide on nipples. They told me that "nipple preservation" was an option but I said to Hell with those sucky things. If I want nipples, I will sit back as they are painlessly tattooed onto me. Ah, modern art. 

Just a few days ago, I built up the courage to stand in front of the mirror without my shirt on. From a bit of a distance, I couldn't really see the relatively enormous, and still somewhat raw, scars. I could just see the shape of my new breasts, and it was flat-out remarkable. Terrifying, shocking, unbelievable, and yet wonderfully remarkable. Because in a crazy way, I've never felt so proud of my own body. It has nothing to do with the pretty awesome shape of my fake boobs, because those are just little pockets full of saline. Rather, it had everything to do with my realization that I have come so far since my saggy left boob was squished into the mammogram machine. I've come so far since the radiologist handed me the phone number for the new cancer patient line. Come so far and learned so much. Including that the human body is a truly remarkable thing, even when it needs a little tweaking. Or better yet, especially when it needs a little tweaking. 

Monday, September 24, 2012

Solitude and Friendship

On my first day of being alone, I didn't spend more than five minutes by myself. I spent almost all of the day with Lauren, or as she's known in our house, "Auntie Lauren," Sean's most lovely girlfriend, who came to visit me. We hung out all day, sometimes in comfortable silence, but mostly in fun, light, and sometimes therapeutically-more-serious conversation.

Before Lauren's visit, my Mom and I caught up over the phone about some issues about my chemo options. And after Lauren left, I answered a call from my Aunt Helen who was not so inconspicuously calling to check up on me. After the kids got home, we all enjoyed a fabulous dinner with Brianne, Seamus, and ... Baby Mehigan (who apparently likes a bit of lasagna).  Yep, I'm going to be an auntie!!! I've known since the week I was diagnosed, and the little lime-sized blessing in my best friend's stomach has been a constant source of beaming light through these difficult weeks. I can't wait to hold that baby and tell him how much he meant to me from the moment I knew he existed. (I think it's a boy -- then again, my gender instincts were wrong on both of my own kids, so it's probably a girl. Either way, I already love that little one with all my might.)

Now the house has grown quiet as Brian starts to correct papers and Teddy reluctantly surrenders to sleep (very reluctantly -- after 30 minutes of quiet, he just yelled down to me, "Mommy, how do you spell your name?" I wish I were joking. "T-A-R-A," by the way.).

After reading last night's blog, a good friend sent me an article about solitude. Actually, it's a script of a speech made to the plebe (i.e., first year) class at West Point back in 2009 by literary critic and author William Deresiewicz, and it's about way more than solitude. It's about leadership, character, and to me, self-improvement. On this first day of my effort to learn to be better when I'm by myself, I read it while Lauren sat on the sofa a few feet from me and my healing chair.

Relative to my blogs, the speech (linked HERE) is long, and many of you may not want to take the time to read it. I never meant this blog to feel like a homework message board. But in my humble opinion, the time spent reading it, and more importantly, reflecting upon it, would be well worth it, even if you don't agree with all it has to say.

I could take any paragraph of this speech and write a post about it. For me, it's that rich. But I'll be selective, at least for now, and choose just two passages on which to reflect tonight. Here's the first:

Multitasking, in short, is not only not thinking, it impairs your ability to think. Thinking means concentrating on one thing long enough to develop an idea about it. Not learning other people’s ideas, or memorizing a body of information, however much those may sometimes be useful. Developing your own ideas. In short, thinking for yourself. You simply cannot do that in bursts of 20 seconds at a time, constantly interrupted by Facebook messages or Twitter tweets, or fiddling with your iPod, or watching something on YouTube.

I find for myself that my first thought is never my best thought. My first thought is always someone else’s; it’s always what I’ve already heard about the subject, always the conventional wisdom. It’s only by concentrating, sticking to the question, being patient, letting all the parts of my mind come into play, that I arrive at an original idea. By giving my brain a chance to make associations, draw connections, take me by surprise. And often even that idea doesn’t turn out to be very good. I need time to think about it, too, to make mistakes and recognize them, to make false starts and correct them, to outlast my impulses, to defeat my desire to declare the job done and move on to the next thing.


I'm a multitasker, and before I read this article, I considered it a strength. However, now that I actually think about it, I often do things in bursts of 20 seconds, and I am constantly fiddling with something -- my iPhone, iPad, laptop, Facebook, email, TV. Just as I typed this, I heard three consecutive pings of a new email as it hit three separate devices. And now I sit here fighting the urge to check who it's from. Heck, I give up. (Back now, it was just the President writing again, and inviting me to dinner, again.) Darn, I suck.

Where was I? Right, I'm a multitasker. And today I started to question whether in fact, this could be a weakness that needs some immediate attention. I admit, it's definitely a weakness in the kitchen -- Brian and I have had many laughs over the fact that I honestly can't stay focused long enough to twirl lettuce in the salad spinner. Really, I can't. I'll find that the cabinet with the spinner needs to be cleaned or the countertop is sticky and the sponge stash under the sink need to be restocked. Then I'm out in the garage at the BJ's stash of sponges thinking about how to best fill the space where that old file cabinet once sat. When I get back, without the sponge, Brian's already spun and finished the salad. 

At work, I'm much better (thank goodness since I bill by the hour!). There, I can take a task and focus on it for a good chunk of time. I love the feeling of getting lost in thought and surfacing an hour later. I think Mr. Deresiewicz would be proud of me in those hours. 

But the kitchen and my office are two ends of the spectrum. It's everything in between that I feel I need to work on -- from the time I spend with my kids to this very blog entry. Am I outlasting my impulse to check my email when Annabel and I are building a Lego tower or coloring a picture? Not always. But I should. Even the President should wait for that precious time. And so this passage has made me stop to think, to reassess, to try to be better. That's why I think it's such a good message -- because I'm pretty sure that's just what it intended that I do. 

The other passage I wanted to call out may at first appear to be a way of justifying my day of constant company. But it's not that. 

So solitude can mean introspection, it can mean the concentration of focused work, and it can mean sustained reading. All of these help you to know yourself better. But there’s one more thing I’m going to include as a form of solitude, and it will seem counterintuitive: friendship. Of course friendship is the opposite of solitude; it means being with other people. But I’m talking about one kind of friendship in particular, the deep friendship of intimate conversation. Long, uninterrupted talk with one other person. Not Skyping with three people and texting with two others at the same time while you hang out in a friend’s room listening to music and studying. That’s what Emerson meant when he said that “the soul environs itself with friends, that it may enter into a grander self-acquaintance or solitude.” 

Introspection means talking to yourself, and one of the best ways of talking to yourself is by talking to another person. One other person you can trust, one other person to whom you can unfold your soul. One other person you feel safe enough with to allow you to acknowledge things—to acknowledge things to yourself—that you otherwise can’t. Doubts you aren’t supposed to have, questions you aren’t supposed to ask. Feelings or opinions that would get you laughed at by the group or reprimanded by the authorities. 

Last night I felt like I was wimping out when I jumped at Lauren's offer to come visit me, especially after I just hit "Publish" on my blog about being alone. And I admit that today I was excited to answer the phone when I saw my Mom's and my aunt's number on caller ID. Finally, before dinner, I was thrilled to see Brianne and Seamus walk through the door. But ultimately I don't think I was wimping out by enjoying the company of these wonderful people. Rather, I think I was just blessed with a day of true friendship. 

Sunday, September 23, 2012

Alone with Me

In my mind, tonight officially marks the end of the "surgery phase" of my battle with cancer. My sister headed back to Virginia today, Brian goes back to work tomorrow, and despite that my Mom is going to try to be there every moment that she can, I know that she has constant work responsibilities that need her attention. My drains are out and I have taken a shower. And yes, the shower was incredible. But it was so strange too. When I turned to face the warm water, I was reminded that I have no feeling in my chest. Just numbness, and some lingering pain. It was a very odd and slightly disconcerting sensation (or lack of sensation), but I'm sure I'll get used to it.

Today we figured out the logistics of the upcoming mornings. I still can't lift anything over 10 pounds and although I don't really know what that means when I go to lift something, I know that Annabel weighs about 30. Typically, Brian would be gone before the kids wake up, and I'm used to the craziness of packing lunches, feeding them breakfast, getting them dressed, buckling them into the car, and dropping them off at school, all with an eye to the clock so I don't miss my train to work. (That all sounds far too simple when I summarize it in one sentence, but anyone who's done this routine knows that it's a flat out miracle when it gets accomplished each day. My favorite part is the tackle-to-the-carpet I have perfected on my children in an effort to put on (or put back on) some article of clothing.) Right now, however, I can't lift Annabel out of her crib, into her high-chair, or into her car seat, and I sure as heck can't tackle anyone.

With the help of my amazing father-in-law, Paul, who would literally drive to the end of the Earth for us (luckily, he's only in Southie, but with traffic lately, it may as well be the end of the Earth), my family, my better-than-the-best neighbors, and Rena (Brianne's mom), I'm certain we will make the mornings work until I can lift and drive again. It's a new phase in this journey, and I'm going to need to adjust to it.

I'm planning on starting to ease back into work once I have the hang of the chemo, which I hope will be in six weeks or so. But that still leaves me several weeks in between, and likely many days afterwards. During that time, once the kids are at school, I'm often going to find myself alone. I've never had that time alone without work that needed to be done because I've always had a full-time job outside of the house (or been on maternity leave with a new baby). Some people may think this time alone without any real responsibility sounds fabulous, and I may have thought the same a few months ago. But now, faced with returning to an empty house rather than a crowded commuter train, I'm very apprehensive, and I realize a crazy truth -- that I'm scared of being alone with myself.

I'm not going to lie, it was that very thought of aloneness that made me start to take my Zoloft. My doctor had given it to me weeks ago, explaining that many people take an anti-depressant while being treated for cancer. But I hate pills, hate the thought that I'd need to rely on them to feel better, hate that some foreign substance will be toying with my emotions, even if it's in an effort to straighten them out. Nonetheless, on Friday I took my first half-pill.

I know when my mother reads this she is going to try to make sure I am never left alone for a moment, because she'll do anything to spare me pain. Honestly, she's so good, she could probably find a way to make that happen. But the truth is that I need to have that time because I need to figure out how to deal with it. I want to be unafraid of time alone with my own brain, even if it's especially wacky these days. And so, through this entry that began with absolutely no planned purpose, I think I have come to one.

My goal in the next few months is to find a way to enjoy my own company. It sounds like such a strange thing, but it's clear as day to me now. I need to learn to enjoy, or at the very least not dread, my time alone. Despite how much I love company, I don't want to always need to rely on other people to provide a distraction away from thoughts I otherwise can't control. I want to be able to find some peace when those dark thoughts rear their ugly head, and enjoy the company of others as it naturally comes.

Mr. Badoian had a quote in his room -- "You are who you are when no one is watching." I know who I am when people are watching. Now I need to learn more about who I am when they aren't. I'm ready for this, because I really hope (and actually, even tend to think) that I'm going to like who I find.

Saturday, September 22, 2012

Little Wonders

Last night was a tough one. I woke up around 3:45, sore on my front side, and after taking my Advil, I couldn't get back to sleep. It was awful. Despite my very own written words of just this week about optimism and my inner fighter, I was paralyzed with fear. Before my diagnosis, I'd never been so scared that I could literally feel the hair on the back of my neck stand up. But that's happened several times of late, and it happened last night.

The source of my terror was as clear as the shape of the ceiling fan that I examined for hours -- it was the chemotherapy that I will begin the week after next. At first, I thought of chemo as the relatively easy part that would follow the part that terrified me the most -- the surgery that would reveal how far the evil cancer had invaded my body. But now that the surgery is passed, I'm face to face with chemotherapy, and it no longer feels like an easy part of anything. The reality of it hit me this morning, and it hit me hard

Early morning bouts of terror fueled many of my past entries. But this morning, even my blog couldn't help. I was so frightened of life and of death, I couldn't even get up out of my chair to get my laptop. 

After tossing and turning for over an hour (in a purely metaphoric way, since I still can't come close to physically tossing and turning), I reached for my phone which was close by. I decided I would respond to an incredible email I had received the day before from a most thoughtful and reflective husband and father who also lives in Canton (let's call him "Jim," since I hate to make private conversations public without permission). 

In his email, which meant more to me that I could ever express, Jim told me about the song, "Little Wonders," by Rob Thomas. Jim copied the lyrics into the email for me (see below), and I immediately fell in love with the message of the song. 

"Little Wonders" by Rob Thomas




Let it go,
Let it roll right off your shoulder
Don't you know
The hardest part is over
Let it in,
Let your clarity define you
In the end
We will only just remember how it feels

Our lives are made
In these small hours
These little wonders,
These twists & turns of fate
Time falls away,
But these small hours,
These small hours still remain

Let it slide,
Let your troubles fall behind you
Let it shine
Until you feel it all around you
And I don't mind
If it's me you need to turn to
We'll get by,
It's the heart that really matters in the end

Our lives are made
In these small hours
These little wonders,
These twists & turns of fate
Time falls away,
But these small hours,
These small hours still remain

All of my regret
Will wash away somehow
But I cannot forget
The way I feel right now

In these small hours
These little wonders
These twists & turns of fate
These twists & turns of fate
Time falls away but these small hours
These small hours, still remain,
Still remain
These little wonders
These twists & turns of fate
Time falls away
But these small hours
These little wonders still remain


"The hardest part is over." "Let your clarity define you." "In the end we will only just remember how it feels." These words resonated in my core. 

Jim also identified the real key to this song (in a much more eloquent way than I ever could) -- that the most cherished parts of life, those "little wonders," are made in the "small hours," not the grand ones. 

I thought about this song a lot today -- as I watched Teddy run in circles at his youth soccer practice, as I watched Annabel flip around on the bouncy house at the fabulous Ricky Shannon Field Day, as I watched my neighbors all gather for our annual block party, and, at bedtime, as I heard Annabel start to learn to count (you say "one," she says "two"; you say "eight," she says "nine-ten"). I enjoyed these small hours with all of my heart. So much, it hurt. 

In the end, I will only just remember how terrified I felt early this morning. But the small hours of today, those little wonders, will still remain. Thank you, Jim, for making that all so clear to me. And for reminding me to let my clarity, not my times of fear and angst and confusion, define me. 

Friday, September 21, 2012

Mr. Badoian

Most people who live in Canton, Massachusetts know of Mr. Badoian. Just the name invokes a sort of "hail to a legend" spirit in my town, and in most circles that involve high school math.

Mr. Badoian is 84 years old and has taught math for 58 years (if my math is correct). He was my math teacher when I was in high school. And if you go to the end of the math hallway at Canton High School today -- which appropriately now bears his name -- you'll still find him in his classroom. No joke; I found him there last week (at 3:30, mind you, and school gets out at around 2). 

I'll never forget our homework assignment on the first night of freshman year math. It's possibly the same assignment this year's class had to complete -- we had to memorize our perfect squares from 1-50 (you know, 1x1, 2x2, all the way up to 50x50). I can't remember if Mr. Badoian quizzed us on those squares the day after or not. I would guess that he didn't formally quiz us. Instead, I bet he just called on a student as the need for a perfect square arose. Because after only one class, Mr. Badoian had already established such respect that most of us, even as puny little freshmen, would rather have been right in that scenario than get an "A" on any quiz. 

Mr. Badoian's testing techniques were unique -- he never announced tests. His philosophy was that we should prepare every night as if a test awaited us the next day; why would we postpone real understanding until the night before an announced exam? So we knew there was a test when we walked into his room and white papers, blank-side-up, lay on our desks. (It was a favorite before-class joke (when Mr. Badoian wasn't yet in the room, of course) to put a blank piece of paper on the first desk you saw when you entered the room. Of course, I fell for it every time. Gosh we were nerds, and I loved it.)

Mr. Badoian also graded like no one else. A "zero" was a perfect score; that meant you had no points taken off. It took me years to earn my first zero, and I sometimes wonder if by that point, Mr. Badoian just felt like he needed to humor me. Nah, he was far too honorable for that, but surely the test was a relatively easy one. I was always the slowest one in the class. (Yes, Michael Bower, admittedly slower than you.) But I worked hard in that class, and I will forever be proud to be able to say that Mr. Badoian was my teacher. 

Less than a year ago, when I decided to leave my job at a big law firm, I found myself self-reflecting, and I wrote Mr. Badoian a letter thanking him for all he'd taught me. For teaching me the real meaning of attacking a problem and working through it; the real meaning of hard work and preparation. 

I have already written about the walk I took last week (I still can't believe that was only last week), the day before my surgery. Like all of my stories, I couldn't cover everything in that one, and I left out what happened at the end of my walk (and, even on this second time around, I'm going to need to leave out something else that one day, I'm sure I'll share).

We live right near the high school and at the end of my walk, as I passed the school with only 20 minutes to spare before I needed to pick the kids up from school, I found myself oddly drawn in. I haven't visited CHS after school since I left teaching years ago. But something came over me. And I needed to find Mr. Badoian. 

As I mentioned above, I found him, seated at his desk reviewing the work of an eager (and appropriately terrified) student at his shoulder. I had no idea why I was there, and neither did he. I told him that I just wanted to say hi, but then I started to cry, and that seemed very odd, so I also ended up telling him about my impending surgery. He hugged me, and his hearing aid buzzed through the long embrace. He said "I'll pray for you, because that's what I do." I had no idea Mr. Badoian was a praying man. But I liked it, because every mortal listens to and follows the orders of Mr. Badoian. So hopefully God does too.

I decided to write about Mr. Badoian today because I'm still puzzled by my compulsion of last week. Why, on the day before my surgery, did I need to see Mr. Badoian, of all people? 

I wrote the preceding part of the entry before dawn this morning, and since then, I have reflected on this question.

(I have also completed the echocardiogram, and that shit huuuuuur-rrrrt. Turns out an "Echo" is an ultrasound of your heart, and ultrasounds only work if the rad tech pushes down with the gooey wand. Also turns out my heart is basically under my left boob. With a raw set of boobs, that 20 minutes may have taken years off my life even though cancer itself will not. Luckily, that appointment was followed by a lovely one with the nurse (or maybe she was a P.A.) at Dr. Chun's office who removed my last two drains. Two deep breaths, and those suckers were out. I need to wait 24 hours to shower and the countdown has begun!)

Anyways, I have thought a lot about this Mr. Badoian puzzle today, and Brian and I talked about it as we enjoyed the benefits of the HOV lane this morning (despite that I should be wired to complain about Boston traffic, I just love whoever came up with the idea of an HOV lane). So here's where I landed.

I think that there are a lot of people who like a good fight, a good challenge, a good chance to prove I can do that, even though it may not be so obvious at the time. Those people do all sorts of things -- they practice law, practice sports, practice medicine. They climb mountains, scuba dive, take a Zumba class, or walk for charity. They start their own businesses, do crossword puzzles, learn to play an instrument. They teach, they coach, they write, and they do math problems. They take up running when they are born with no legs, and they learn to play baseball when they are born with no arms. Some of the very funniest stand up on stage and make us laugh. Some of the very brightest try to find life-saving discoveries. And some of the very bravest, and the most unselfish, join the military.

Of course, no one chooses misfortune, just as I sure as heck didn't choose to get cancer. But nonetheless, those fights are shoved in our laps and we're forced to react. We're forced to take the problem, dissect it, and hand over our answer.

I think this is why I wanted to see Mr. Badoian that day. I think it's exactly why on that walk the day before my surgery, I thought about my Dad and his quest to get me to feel mad that I got cancer. Because even though this is most certainly not the fight I wanted, it's the fight I was given. And even though solving math problems in high school may not be as hard as beating cancer, those math problems helped shape the fighter in me.

Lately lots of people have said things to me that make me think they question their inner fighter. They say things along the lines of, I wouldn't have the strength you have. Please know that you would. Because at some point in your life, I bet you've been blessed to know a Mr. Badoian; someone who pushed you to do things you never thought you could, someone who, day-in-and-day-out, pursues excellence for your greater good. Those people give us a powerful resiliency and a sheer stubbornness that come in really handy, whether you're taking an unannounced math test or lying on your stitched-up side, gritting your teeth through an Echo nine days after a double mastectomy. 

Thursday, September 20, 2012

Anonymous Strength

Today I didn't talk to a single doctor. I was supposed to go in for some sort of heart test (a "MUGA"?) to prepare for chemo but my insurance company would only cover an echocardiogram, and that got rescheduled for tomorrow. (Dr. Bunnell said the "Echo" test was fine.) So Brian and I went out to breakfast instead. It was wonderful.

It was also strange, as I realized for the first time since my diagnosis that doctor appointments have come to be the events that shape my day. When Brian and I got back from breakfast, we walked into a quiet house, since the kids were at school. And we laughed at the fact that we had no idea what to do.

Brian had to get some school work done, so I do what I always do when I feel task-less. I cleaned. Of course, Brian kept telling me to sit down, and baiting me with the fact that I will only get my drains out tomorrow if the output in them is small (activity makes it go up). So I stopped cleaning. When I was done.

After a short nap, I ended up convincing Brian to go for a quick shopping trip at an outdoor shopping center because it is a gloriously beautiful day. I also needed to get out of the house. I had started to think bad thoughts and needed to clear my mind.

(This is how twisted my mind can get -- I started to wonder if maybe Dr. Bunnell was not that interested in my lymph nodes because in fact they are not the big issue. Since the HER2 protein was, again, his focus in yesterday's meeting, I started to think bad thoughts about that pesky protein. Urgh.)

When we were shopping, I had another yucky emotion -- jealousy. As I walked by women, I started to think of how jealous I was of their cancer-less boobs. I started to feel sorry for myself.

On the way home from shopping I came clean with Brian about my dark thoughts of earlier (not the jealousy part since he'd understandably scoff at that). I told him it's scary to me that I feel like my life is riding on one drug. It scares me that just a few years ago, before that drug, I may not have made it. Brian replied that if he had been of draft age during Vietnam, he may not have made it too. But I was born when I was born and they have the drug, and I'll be fine. If only my mind had an ounce of his clarity.

After that, as Brian returned to his school work, I returned to the second thing I do when I feel task-less -- Facebook. There, I found this "Other" category that held a message that had been sent to me on September 1. It was from an anonymous reader who told me she had been following my blog. Her family is dealing with what I can only describe as a struggle far and beyond my own, mainly because it involves an infant.

I feel terrible that I only now found this message, as it was one that should have been returned immediately. But I also can't believe that I found it today. Because it was exactly what I needed to slap myself across the face to remind myself of how lucky I am. To remind myself that people out there have more courage and strength and resolve than I could ever dream of, and here I am feeling sorry for myself because they actually have a drug to help me!?! What, do I need a plethora of options of life-saving drugs? Only yesterday I was complaining about options. I was starting to sound like a brat.

I know that the anonymous reader meant absolutely nothing but kindness with her message. I am certain she never, ever intended it as a wake-up call to me to appreciate all of the good news and good fortune that I have been given. But I know that today, her message was just that. I needed to be reminded that scattered all over this planet are people that could teach me a thing or two about hope and strength and miracles. And remind me that pessimism and jealousy are a complete waste of time.

Wednesday, September 19, 2012

Options

I barely slept a wink last night. Oddly, I wasn't up the whole night worrying, either. Sure, I worried a bit, but for the most part I just couldn't sleep (not that the itching on the site of my tubes or the howling winds helped that). I watched a whole bunch of "House Hunters International," a few "Love It or List It" episodes, Friends, some infomercials, and then by 4:30AM, the local news came on. I was so excited that others were joining my awakeness that I watched that for a bit. I never realized that the first 20 minutes of the local news tell all before the same stories get repeated for the rest of the morning. When the repetition began, I moved to my desk to do random things like fill out the "Make a Plate" order and return shipping form for the plates that Teddy and I made last night (each additional plate is $11.95, seriously?!?!). Then I started to get ready for today's appointments.

We left the house at 6:45 this morning and returned at 2PM so needless to say, an afternoon nap was in order. Brian and I both got in a solid hour and a half of heavy sleep before he picked up the kids.  

So, you may be waiting for the big "reveal" -- the "final answer" as to whether the cancer spread into my lymph nodes. Trust me, I understand because that's all that was on my mind when Dr. Bunnell entered my exam room this morning. But it was clear from the start of the conversation that he wasn't focused on the lymph nodes. He was focused on the chemo options. Looking back, this was a great lesson in communication because it's hard to have a conversation click when two parties are starting from two totally different vantage points. (An interesting parallel to how you may kindly be thinking, Why are we talking about "Make a Plates" before lymph nodes?)

Gradually, we got there. Dr. Bunnell confirmed that my cancer had not spread to my lymph nodes, and even better, the pathology showed no evidence of it in the vessels that surround my lymph nodes. Obviously this was great news. 

But I feel like this space has become so much more than news on my own condition. I would hate it if my personal situation in any way frustrated someone out there who received different news, especially, "bad news." Even though that frustration would be totally understandable (I myself have felt it, had anticipated it this week, and will likely experience more of it along this journey), that frustration is still swimming in a sea of hope. Because what I have learned is that at Dana Farber, they always have a plan. 

I am blessed that my plan has a solid start off the blocks. Still, HER2+ cancers involve a protein that can do some serious damage, so even though the tumor is gone, we're not done yet. (Dr. Bunnell drew a picture of a cell and explained lots of smart science stuff. As much as I loved my Biology classes  (especially the one in high school when we got to make a cake in the shape of a cell -- yum!), I have a new aversion to talking about cells so I'm not going to recount any of that information here. But if you're interested, get yourself into the oncology field...kind and brilliant people are always welcome!) 

With the 1.2 centimeter (grade II of III) tumor out of my body, we now need to make sure that no cancer cells slipped through undetected. That's what the chemo is for. Then we need to make sure that that HER2 protein does not work its devilish way on cells in my body, and the Herceptin will target and halt the protein's evil efforts. 

So we talked for over an hour about my options. Truthfully, I didn't think I'd have options. I thought the doctor would come in and tell me what's next. But as Dr. Bunnell explained, because the pathology was so good, we have some choices to make. 

Essentially, for me, there are three chemo regimens from which we can choose. (And I should note my understanding that each patient is treated as a unique individual so by no means do I mean this information to have blanket application to anyone else.) "Option 1" is the least aggressive, Option 3 the most aggressive, and Option 2 is, no surprise, a middle ground. We talked a lot about the different drugs involved in these chemo regimens as well as related clinical trials, past studies, and side effects. My initial reaction was that I wanted Option 3 -- aggressive as we can be, all the way, take no prisoners. But Dr. Bunnell explained that Option 3 has some drawbacks. First, it involves a drug that can cause heart damage (congestive heart failure) (the drug begins with "A," but I don't remember it nor do I want to investigate the precise name). Also, this regimen is 24 weeks long whereas the others are only 12 weeks. It's the most toxic, which means it kills cancer, but it would take quite a toll on my body too.  

So we moved to Option 2. I think I'm most likely to end up at this one. This option involves 12 weeks of chemo, plus one year of Herceptin, plus five years of Tamoxifen. Heart damage is much less of an issue. The side effects are the ones you'd expect -- fatigue, hair loss, nausea, plus some really scary ones that Dr. Bunnell explained that he has to disclose, despite their remote nature (including that form of leukemia that Robin Roberts contracted after her cancer treatment, and for which today she received a bone marrow transplant). 

As with most chemo regimens, on this one, my white blood cell count will plummet. To really low. Which means that any sort of infection -- a sore throat, a cough, a cold, a cut that doesn't heal well -- needs to be handled with extreme caution. Dr. Bunnell said that if I get a fever of 100.5 or above, I page him immediately, no matter what time of day. If it persists for more than an hour, he will send us to the emergency room and I will likely be admitted for a few days so they can give me the power to fight what my body will be ill-equipped to handle. Sounds like fun. (Also proves Dr. Bunnell's unwavering commitment to his patients!) So I stopped at CVS between appointments and got my flu shot. Dr. Bunnell said that everyone around me should also get their flu shot. I immediately felt guilty for the year I forget to get one. I never knew how much it could effect some other less fortunate person. 

In the course of the conversation, I asked a question that brought with it a tough answer. I asked Dr. Bunnell, if we go with Option 1 or 2, and my cancer comes back, can we reserve Option 3? It doesn't work that way, he explained. If my cancer comes back, it's not curable. They can treat it, and prolong my life, but our shot at a cure is now. This was the hardest news to digest, but it's the truth, and I appreciate that he gave me that. 

In the end, Dr. Bunnell seemed frustrated (in a calm and collected way) that he honestly didn't know which chemo regimen would be best. He admitted that he wish it were a simple answer, but that I was lucky to even be able to have this conversation. He seems to be tending towards Option 2, which is probably why I am too. But talk about impressive, here's how we left it....

On Tuesday afternoons, the oncologists and other team members meet at Dana Farber for their "Tumor Board" (not sure if that's the colloquial name in which case my caps may seem silly). Anyways, Dr. Bunnell wants to present my case to the Board/board next Tuesday and see what his colleagues have to say. So next Wednesday, we meet with him again to make the final decision on which route we'll choose. Given how quickly I have healed from my surgery, I will start chemo the week after that. 

After this appointment, we met with Dr. Karen Fasciano, the incredible psychologist (and fellow Bowdoin grad) who saved me from my depths following the debacle with Dr. Funt. Brian loved her as much as I had. She helped us process and again assured us that she'll be here for us through this journey.  

Then, after a quick catch-up and hug from a lovely former colleague who is now an attorney at Dana Farber, we headed over to the Faulkner to Dr. Chun's office. I got two of my four tubes removed, which means I can fit the remaining ones in my pocket and (hold your applause) ... wear a regular shirt! (No more of the same one shirt with the special pockets for the drains, as much as I appreciated that convenience.) I hope to get the remaining two tubes out on Friday which means I can shower on Saturday morning. I plan to shower 'til the hot water runs out...sorry Mother Earth, but conserving water is not on my agenda this weekend. 

No doubt, today was a good day. Do I feel relieved and elated? Not really. No doubt, I feel blessed, as I only need to wait for our car in the valet room at Dana Farber to know how lucky I really am. But today left me with more of a mixed feeling. Because today was more real life. And in life, we need to assess our options, use our brains and our instincts, and make tough decisions. In life, there are no absolutes; we'll never know our future. As the quote from last night reminds us, we can celebrate change, but today reminds me that uncertainly is scary, too. Still, I believe in that quote, because today my Mom, Brian, and I got up and we did our best, as did so many others at Dana Farber and beyond. And that's also something to be celebrated, because at least for myself, it's something I feel I can control.  

Tuesday, September 18, 2012

Good Words Before a Big Day

Tomorrow is a big day. At 8AM, we meet with Dr. Bunnell at Dana Farber to discuss the pathology results from my surgery. Of all appointments, this one tells all...OK, maybe not all (I've come to realize there are few absolutes with this disease) but a whole-heck-of-a-lot. As you can imagine, emotions can run wild before an appointment like this one. I thought the best medicine would be a night with my hubby, not a night with me typing away on my blog, so I'm keeping this one short.

First, a great quote from just a few minutes ago.  While we were putting Teddy to bed, Brian was explaining to Teddy why Brian is mad at me and why he was yelling at me tonight -- mainly because I keep lifting things and doing things that the doctor told me not to do. (Does Brian really expect me to be home after five days and not clean something?) Teddy's response: "Daddy, stop yelling at Mommy. She can do anything she wants. And she's not lifting things. She's only carrying things." 

Second, an even better quote, this one from a movie that we watched this afternoon -- "The Best Exotic Marigold Hotel." It's been a long while since I stayed awake for a whole movie, and this one was worth it. To me, this quote says it all, and it's especially sweet because the words come from the character (Evelyn's) blog:

The only real failure is the failure to try, and the measure of success is how we cope with disappointment, as we always must.  We came here and we tried, all of us in our different ways. ... We get up in the morning, we do our best. Nothing else matters.  

...

But it's also true that the person who risks nothing, does nothing, has nothing. All we know about the future is that it will be different. But perhaps what we fear is that it will be the same. So we must celebrate the changes. Because as someone once said, "Everything will be alright in the end, because if it's not alright then trust me, it's not yet the end."

Hospital Montage Song

Brian did a great job writing about our hospital stay that (I can't believe) was almost one full week ago. I've got lots to add from the patient perspective and will do so soon, but I wanted to share a song that pretty much sums up how everyone at the hospital treated us, and judging from what I've heard from so many others, how they treat all of their patients. You may remember this song from watching the Olympics (especially women's gymnastics). Not sure how much it fit that context, but it definitely fits this one. On my "Kick Cancer's Ass" playlist, this was Kirsten's contribution.


Monday, September 17, 2012

My Second Family

After I posted yesterday’s blog I basically passed out. I was absolutely exhausted, nauseous, and burning up. Most of all, I was frustrated. Rachel had typed it out from my dictation (my own human “Dragon”), I read it over just once, and still, I could barely pull it off. Pathetic, I thought. After a two-hour nap, I cautiously ate a piece of toast for dinner, and then began to dread what I thought would be a sleepless night. A few old “Friends” episodes later, I nodded off. Then, it happened…I slept through the night! Brian said our celebration over this achievement officially proved my newborn baby status. It really was like the first night that our kids slept through the night (yes, Teddy was 14 months old when that happened)…when I woke up and it was light out, and I was confused, shocked, and totally excited.

Last night, since my Mom has a terrible cold (poor thing, she just keeps saying, "I just hope you dont get it"), Rachel kindly volunteered to play night nurse. She stayed next to me and woke me for my nausea medicine when the time came. I remember her handing me a pill in the middle of the night and saying, “Take this then go right back to sleep.” And I did.  Then she stayed half awake all night making sure I didn’t need anything. She's so truly good to me, and not only because I know how much she loves her sleep.  

This was already enough to totally make my day, but it only got better from there. Last night, in an effort to do anything that would stop the nausea, I stopped all meds except the antibiotic, Advil, the anti-nausea medicine, and the stool softener.  That meant no more narcotics and no more Ativan.  I still haven’t taken either in over a day.  Finally, I feel like myself again -- I know what day it is, I’m no longer repeating myself, and I can remember if I talked to someone this morning rather than asking whether I have talked to that person since my surgery. More importantly, I am happy and hopeful and hungry! Today, it’s official -- I turned a corner.  

It felt so good to feel good, I didn’t even know what to do with myself.  So after Brian emptied my drains and gave me a "sponge bath" (see below) we went out to lunch.  It was 11AM and we were the first customers at Joe’s. I couldn’t eat much, but it didn’t stop me from ordering half the menu. It was delicious and even though we had to scarf it down to make it back in time for the visit from the home health nurse, it was one of the best lunches I’ve ever had. 

(Oh, while Brian was giving me the “sponge bath” (i.e., wiping me down with a wash cloth while I shivered in the cold with my tubes and drains laying on the bathroom counter top), I came up with my own quote that’s parallel to one I have previously posted – “The measure of a husband is not whether he pampers you on your honeymoon, but whether he pampers you after a major surgery.”)

After the nurse’s visit, we enjoyed a quick visit from Brianne’s mom, Rena, who brought over some delicious homemade chicken soup.  We all slurped down a bowl right away – it’s that good.  Rena has fed me since I met Brianne 18 years ago, and she does it all without ever expecting so much as a thank you. More than that, she's been a part of every milestone in my life since I was 14. She's a truly remarkable wife and mom and second mom, and I don't know if she has any idea of that fact.  

Then we enjoyed some time with my cousins who stopped by to catch up. Brian was at Kyle and Susan's wedding with me and my family almost 12 years ago and since then, we have watched our kids start to grow up together. I know they'd agree -- there's something so totally cool about that. Then, still high on the feeling of no-more-nausea, I decided to go with Brian to pick the kids up from school. With my trusty pillow under the seatbelt chest strap, we headed to school, me feeling like I hadn’t seen the two of them in months. When they saw me, they both let out a gleeful little shriek.  Teddy was so gentle and cautious, and Annabel was the exact opposite.  “Mama Up!” she kept yelling at me, stomping her feet when she realized she wasn't going to get what she wanted. It was a bit of a scene (too bad she weighs more than ten pounds...much more), but Teddy’s teachers completely understood and we all exchanged our hugs before we headed out.

The next three hours proved to me two important things I’ve known for years – that young kids are exhausting and that I really do have the best best friend I could ever ask for.  While Brian was playing baseball in the back with Teddy (no surprise, Teddy insisted), I tried to watch Annabel on my own. That proved impossible, and I realized that at almost the exact moment that Brianne pulled in the driveway to drop off dinner.

I don’t know how she does it, but Brianne always shows up at the exact moment that I need someone most. And there she was, as Annabel was climbing up and down chairs in the playroom, while I wondered if I should be there to catch her if she fell. I couldn’t decide what would be worse – her falling or me catching her.  I know it sounds so selfish, but at this stage, she really is much tougher than I am.  Luckily, I didn’t have to decide because there was Brianne, with a hot plate on top of her makeshift potholders -- a folded up Budlight box and a Westwood High School athletic t-shirt. How could you not love Brianne?   

While the girls colored pictures and played games, including Annabel’s favorite game of running down the driveway into the street, Teddy practiced his hitting and Brian practiced his patience.  Finally, we released Brianne, and enjoyed our homemade dinner (made by Brianne’s cousin, Lynne…sooooo delicious!). 

After baths, iPad (Annabel officially can play more games on the “iPee” than I can), and Cat and the Hat, it was bedtime. Teddy struggled with the idea that I needed to sleep away from home one more night. I had to explain to him that we had to move "my chair" to our house before I could sleep there.  He told me to move the chair tonight.  I lied, and said I’d try to.

And then again, I returned to wondering what we would ever do without Brianne and her family. About a week after my diagnosis, Brianne stopped by. We were hanging out when the nurse from my health insurance company called. Brianne overhead my side of the conversation when the nurse asked me if I had a good recliner to sleep in after my surgery – I said I didn’t. 

A few days later, Brianne and Seamus gave me the ultimate gift – the recliner in which I sit now, and in which I have sat for the majority of the time since my surgery.  They had collected money from Brianne’s family and together, they all bought me my “healing chair.”  And so I have healed – because she’s always one step ahead of me and what I need. 

So I arrive again at the question I keep coming back to -- how does anyone get through this process without a family as fabulous as mine?  And if there’s any proof of how lucky I am – I have two fabulous families.  Seriously, I feel like I should share.  Because really, I’m just spoiled rotten, and I didn't even need to turn any corners to know that.   

Sunday, September 16, 2012

My Backscratchers

I’m not even sure where to start; it seems like so long since I last wrote. Thanks to Brian, you’re caught up on my surgery, and on the mighty team of angels at Faulkner Hospital. And you’re caught up on the news that the pathologist in the OR found my sentinel node to be negative. Brian already discussed the indescribable victory that this news was for us. I can only say that I still feel like the luckiest woman in the world to have received it. On Wednesday, we meet with Dr. Bunnell (my oncologist) to discuss the final pathology results and my continuing treatment plan. We were told there is a very small chance that additional testing could still reveal cancer in that node, but we are betting on the odds on this one, and celebrating that the surgery itself really couldn’t have gone any better.

Since then each day has blurred into the next and I often have to ask what day it is. Today, I am told that it is Sunday, and even though I was able to type the first paragraph on my own, I have since laid back on my recliner and let my sister Rachel take over, as my nausea has become somewhat debilitating. The nausea is what has kept me from writing earlier today and what caused several calls to the on-call doctor to switch up some medications that might be causing it. Luckily, the nausea only set in last night. Before then, I had other issues that kept me from writing (aside from not knowing what day it was). The biggest problem proved to be my blurry vision, and I mean blurry even with my glasses on. Thank goodness that has improved, but for the last few days I could see long distances or read something two inches from my eyes, but very little in between. Therefore, typing on my computer was not an option. The chest pain has remained relatively under control, except for when I got a little too ambitious about backing off the pain meds. But surprise, two other things caused the most pain of all. First, there were the pains in my stomach that I remember from my previous surgeries – gas pains. When Annabel was a baby, every time she sneezed she would fart. Let’s just say I was wishing for a sneeze attack that never came. Damn, that would have felt good. Eventually, the sharp-as-a-knife gas pains subsided, and my stomach felt huge relief. Then there was throat pain, which I am guessing was caused by a combination of heartburn and irritation from the breathing tube used during surgery. That hurt too; kind of a lot.

But last night was definitely the worst. The nausea came in a relentless wave. Luckily for Brian, I was able to wait for him to arrive this afternoon before I threw up in a bucket he was holding. Then I fell asleep while he watched the Patriots on mute. Apparently they lost.

My Mom continues to be my rock through the nights, keeping a notebook of all my medications, and getting up with me every few hours like I was a newborn baby. I have basically resorted to newborn baby status, as the primary concern of those around me is how much I eat, sleep, and go to the bathroom (although in my current state, I don't have the cute factor that newborn babies have that make their otherwise exhausting and disgusting behaviors tolerable).

The hardest part of all is that I haven’t seen Annabel since I dropped her off at school Wednesday morning, and only saw Teddy for an exhausting five minutes when he stopped by on Friday. They are both doing so well with all the care from Brian and our relatives that I don’t want to rock the boat for my own selfish reasons. Brian and I decided that tomorrow if I am feeling up to it I will go home for an hour before their bedtime and sit with Annabel while she has her bottle and read Teddy a bedtime story. Then I will return to my recliner at my parents’ house and assume the pathetic looking state in which I currently lie.

As for some other details you might be wondering about, Dr. Chun (my plastic surgeon) was very proud of her accomplishments in the surgery, and was able to add volume to the tissue expanders right away. So oddly enough, it still looks like I have boobs, albeit very small ones. There are no nipples (those get tattooed on later), just two big horizontal incisions all stitched and bandaged up. Who knew? Not me, and even now when I look at them I fluctuate between amazement and incredulity.

I have four drains stitched into my sides and Brian has become quite the nurse at “stripping them” and emptying them. This means that he pulls out all the blood, tissue, and fluid from the long tubes before he empties the bulbs and measures the contents. (Yes, pretty much the least sexy context for the word "stripping" you could ever imagine.) As soon as the output is small enough, the drains can come out and I can take a shower. Until then, shampoos in the kitchen sink will do. Aside from the loving support that surrounds me, the one constant in the last few days has been my trusty backscratcher. I am not sure the precise cause, probably the anesthesia, but I have never been so itchy in my life, and my backscratcher is with me at all moments (I sleep with it in hand). Of course, when the backscratcher is not enough, there is always someone nearby to relieve my itch. Lucky them.

Brian joked in his blog that I thought the night we had in the hospital together was romantic. Yes, we do need to get out more. But nonetheless, I still claim that the time that I have gotten to spend with my family and friends as I lie in this recliner healing is very precious time for which I am forever grateful. Poor them, they probably just wish I could take a shower.

Friday, September 14, 2012

"Thank You For What You Do"

The following is the third installment of Brian's guest posting on TBCTRFSCIW.  Tara read the first two and has not fired him yet.

“Thank you for what you do.”

Basking in the utter bliss of the good news we received from Dr. Nakhlis a few days ago, I totally forgot that Anne kept repeating that line over and over to the surgeon in the midst of her own excitement. She was not just saying “Thank you for helping my daughter,” but rather “Thank you for choosing the profession you did. Thank you for making a difference in the lives of cancer patients. Thank you for dedicating your life to fighting this dreaded disease.” I want to extend that thank you to everyone at the Faulkner Hospital who helped us get through Round 1.

Tara’s recovery has been even better than expected so far. What started off as a three-foot walk to the wall about eight hours after her surgery quickly escalated to a victory lap up and down the seventh floor hallway of the Faulkner only hours later. I held her hand while she walked, and I watched Tara get stronger as the staff smiled and provided words of encouragement. Tara is the veteran of two C-sections, so this was her third major surgery. As an observer to all three recoveries, I am still amazed by the quantity and quality of the health care providers that have helped her along the way. And yesterday was no different.

[Although, I do have one recommendation for all hospitals, not just Faulkner. When doctors lead in a team of eager interns and medical students for observations of patients, knock on the door first and send one person in to evaluate the situation and provide a “heads up.” We were both awoken early in the morning yesterday to an army of six people with clipboards and lab coats, standing over us. It was quite disconcerting.  In my confused and sleepy state, I thought I awoke reincarnated as a lab rat. Then, I got my bearings, realized I was drooling, and was embarrassed.]

After my last blog post, I braced myself for what I thought was going to be a long night at the hospital. I was wrong. Digi, our nurse, provided both comfort and care for us the entire night. She helped with the pain and (what was even worse) the uncontrollable itching Tara was dealing with. Digi was tough though. She wouldn’t let us scratch. When we were alone, Tara would ask me to scratch her back, and I would respond, “But Digi said not to!” Then, I would quickly fulfill her request, nervously staring at the door like I was robbing a bank, waiting for the cops to come in and bust me. She was wonderful though. Digi helped us get through what could have been a really difficult night. In fact, Tara called our night together “romantic.” We seriously need to get out more. Post-double mastectomy resolution: Take wife out on more dates so she doesn’t think a night together in the hospital is romantic. But, I guess in some ways, it was romantic.

Yesterday ended up being Tara’s last in the hospital. It seemed like a revolving door of smiles entering our room. Dr. Nakhlis had to don her cape and fly out to the West Coast, so her colleague stopped by in the morning to reassure us of the good news from the day before. The uber-gifted Dr. Chun soon followed to check up on us and remind us that everything went great. Our new nurse Jenny removed the IVs and tubes, and Tara (literally) slept through her visit from the super-nice physical therapist, mumbling that she was listening from time to time. The therapist was supposed to review exercises with my wife, but instead she just reviewed them with me... I felt kind of silly when she made me put my hands behind my head and “do the butterfly.”  During the morning, Tara and I got a chance to spend some time together, and she told me about all the wonderful people that I never got a chance to meet who were in the operating room with her. She may have been disoriented and unconscious during the surgery, but she was deeply appreciative of the support from those people in that room, and so am I.

When Tara’s siblings arrived, I gave my wife a kiss goodbye to head home and pick up the kids from school. The aunties and “uncohs” did a tremendous job watching the kiddos while we were at the hospital (the Shuman children were outnumbered 4 to 2, and I STILL feared for the sanity of the adults who took care of them). But, I selfishly wanted to see the kids, hang out with them, feed them dinner, and put them to bed. As I walked down the hallway of the 7th floor and watched nurses, PCAs, and doctors hard at work, Anne’s words suddenly came back to me. These people dedicate their lives to making people healthier. They chose their profession. They make a difference. And they made a difference for my wife.

Tara was discharged later in the evening and it was home to her parents’ house for the first phase of her recovery. We figured that it would be safer that way, given the two little monsters at our house. Teddy cried last night for his mom. He hasn’t seen her since Wednesday morning, so the little guy was “Mommy-sick.” Instead, we grabbed all the pictures of Mommy from his room, brought them to bed, and sang “the Mommy song.” It’s basically me just making up words about him and Tara… and I don’t do requests, so don’t ask me to sing it. A few cries from the room followed and then it was off to sleep. I got a chance to hang out with my drugged up wife last night for a bit, but she slept most of the time. Fine by me. She was "home" at her parents and doing well.

Right now, it’s another beautiful morning to round out a beautiful week. I dropped the kids off at school and made a beeline for Tara’s recovery house. I ran upstairs, opened the door to her parents’ room and of course, Tara was up and walking. Incredibly well, might I add. I looked at her and smiled, noticing something in her hand. Yup, it was a back scratcher. It has become her new favorite toy. She even itches her nose with it and falls asleep with it in her hand, which come to think of it, is not safe and I will take it from her now.

The most important thing is that Tara is home, doing well, and on the road to recovery. Her family and I are now her caregivers, and thankfully, we are well prepared after our time at Faulkner Hospital. So, on behalf of Tara and all of her family, I want to take a moment to tell all the doctors, nurses, PCAs, therapists, and staff at Faulkner, “Thank you for what you do.”