Friday, October 30, 2015

Skeleton Earrings

About a month ago, I visited my PCP for an annual check-up. I pulled into the parking lot of the building where I was diagnosed just over three years ago. I looked right, to the section of the lot where I had parked that fateful August day back in 2012. I have avoided that part of the parking lot ever since. In fact, I even considered finding a new primary care doctor because of the awful memories I had made in that building.

That morning of my check-up, however, something came over me. I very rare swear, but as I pulled into the parking lot, I decided to turn into a spot just next to the spot I had parked on August 8, 2012 when the radiologist told me I had cancer. "F#&k that," I said out loud to myself. By "that," I think I meant cancer.

It was a small victory, parking in the dreaded section of the lot that I had so avoided for three years. But it was a victory nonetheless.

Today, I had a similar victory. Ever since Halloween day 2012, I have refused to wear anything that I had been wearing that day. I gave away the clothes I had worn, and I was spooked by the homemade skeleton earrings that had accompanied by newly bald head. Without any real thought, I assumed those earrings were bad luck or had bad vibes or were ... something bad. Actually, I don't really know what I thought. I just associated those skeleton earrings with the day that I learned I was deathly allergic to my chemotherapy, and that was not a fun day.

This morning, however, as I reached into my jewelry box, I decided I wanted to wear those skeleton earrings. Sure, the last day I wore them I knocked on death's doorstep, but...well, "F&*k that," I whispered to myself as I put them in my ears.

Tonight as I changed out of my clothes and into my pajamas (at 5:30pm), I got to thinking about those earrings, and Halloween, and even that silly parking spot. And with a whole different attitude, and a little smile, I may even have looked in the mirror and said, "F*@k that," to myself. And really, I very rarely swear.

*   *   *

I barely remember the last time I wrote in my blog. This must be the longest stretch I've ever gone without it. The reasons for my blogging absence boil down to two very simple ones -- (1) every ounce of my energy I have poured into my new teaching job, and (2) I have never been so fulfilled. Granted, there have been some tough times -- a few dark spots when I was convinced that certain pain I felt was my cancer back with a vengeance, and a few sleepless nights wondering if I should begin on medication to shut down my ovaries as another way to lower my risk of recurrence. But all in all, life has never been so good.

With that very last statement (which I deleted thrice and added back each time), comes a bombardment of guilt. Because while I have been blessed to remain cancer-free (I think) and pursue my dream to write and teach, I know that so many other cancer survivors are not as fortunate. In fact, it feels like in the last few months I have heard countless stories about cancer's most relentless nature. Dear friends of mine continue to battle its wrath. And so I admit that I feel guilty. Guilty for my own luck, my own health, and my own healing. It's a whole different kind of "survivor's guilt," I guess.

At the same time, the truth is that "healing" after a cancer diagnosis is not the linear process that everyone wishes it would be. The path is more akin to the footprints of a child lost in the woods. And for someone who has to face cancer more than once, I can't even imagine what it's like.

*   *   *

There are a few things I try never to say to any cancer patient. "You'll be okay,"* is one of them. Because how do I know? I don't, despite that I live in a culture that likes to make false promises. But none of us know what the next minute will bring. I no longer find that reality depressing or pessimistic. I just know it's reality. Honest. True. Life. (*Please note that stories about people who have beat cancer are different and still very helpful.)

What I do want to tell cancer patients takes more than four little words (or three if you count the contraction). Well, maybe what I want to say is short, too, but it comes from a place of significant thought, I promise. I want to tell them, "You are here now. Please know that. You are. Here. Now." I want to tell them that there is so much light and so much life after a cancer diagnosis, despite the number of sunrises that follow. I want to tell them that there will be bumps -- big ones -- and there may even be some moments when you feel like you ran face first into a brick wall. I know that's how I felt three years ago on Halloween. But I also know that today, without any plan to do so and anyone else even knowing (until this blog, of course), I had a small victory that involved a ridiculous pair of homemade earrings. Skeletons earrings that have survived in my jewelry box for three years.

I see now that healing, like hope and like pain, comes in all shapes and sizes. And I see now that small victories -- like parking spots, earrings, and the quiet whisper to oneself, "F&*k that" -- are victories nonetheless. 

Monday, September 7, 2015

Cancer Changes Everything

It's been a while since I sought respite here in the wee hours of morning, and that realization helps me see how far I've come. Then again, it is 3:00AM (on the dot), and my fear has lead me to my key board. I take my place here tonight (this morning?) to state for the record that sometimes it feels like cancer changes everything.

The fear that has me physically shaking has to do with my seven-year-old, Teddy -- the most active (and awesome) little boy I'll ever know. On Saturday night, Teddy got sick. I knew something was wrong the moment I looked at him. He had just played flag football and according to his coach, he completely crashed afterwards. When I saw him, he was pale and he wanted to sit with me rather than play with his friends so I knew something was really wrong. We sat together for a while, both of us sick to our stomach, though for different reasons.

A short while later, he said he felt better so he went off to play. But not long after, he was back and asking to lie down on the sofa. He did, and fell asleep, only to wake up to the need to barf all over the place.

Since then, Brian has barely left his side. The poor little guy has thrown up nine times (he kept count). His temperature has hovered around 100 degrees and he has done nothing but sleep and ask us when he is going to feel better. Whenever he asks that I assure him that he could feel better the next time he wakes up and I tell him that I wish I could take all his sickness away and put it in my own stomach. It's truly heartbreaking to watch your little kid be sick.

It's also absolutely terrifying. On top of the constant puking and the fever, Teddy has been complaining about a headache. Every time he says it, I want to puke, too.

I admit, before my own cancer I would have worried about my sick son. But I just don't think my mind would have gone to the dark places it has gone now -- to crushing thoughts about leukemia and other childhood cancers. But perhaps as evidence of a tinge of my own post-traumatic stress, that's precisely where it seems to have landed. At least, this morning.

*   *   *

This past week, as I started my new teaching job and thought to myself at least twice every single minute, "I am the luckiest person in the whole entire world," I even threw cancer a few silent "Thank yous." I never would have had the guts to quit the law and return to teaching if it wasn't for cancer. Or even forget guts -- I never would have had the insight that lead me to the realization that that is what, deep down, I really wanted to do.

But right now, as poor Teddy sweats in my spot in bed next to Brian and I lie awake, shivering, downstairs on the sofa, I want to spit at cancer and take back any hint of Thanks I ever gave to it. Because at this very moment, it feels like cancer changes everything. After cancer, a headache is no longer just a headache. After cancer, a lump is no longer just a lump. After cancer, the Intruder has an awful way of reminding us of his potential presence.

And so I lie awake and listen...hoping and praying with all my might that the heat coming from my son's skinny little body has absolutely nothing to do with that beast. I lie awake hoping and praying that the sickness I feel isn't just worry, but rather a stomach bug that will prove to me that Teddy is sick in a "normal" contagious sort of way. Because sometimes after cancer, nothing feels normal -- both in the miraculously good ways that I found in my classroom last week, and in terrifyingly bad ways that torment me when I see my son sick.

Monday, August 31, 2015

Laundry, Lady Bugs, and Lint

I am really good about making sure clean laundry is available to my family but I kind of suck at folding the clean clothes and putting them away. For the last few days, three baskets of clean laundry has lingered around our kitchen table as the kids fetched their favorite clothes and faded bathing suits out of them.

Last night before the kids went to bed, in an effort to ease them back into the reality that summer is ending and structure and responsibility are on the horizon, I decided that we would all fold the laundry together and finally put it away. Teddy and Annabel saw it as a way to stay up later so they agreed to help. It went swimmingly. For the first 90 seconds.

Then I found a lady bug.

It was odd, I admit. The lady bug looked perfectly fine, stuck to the inside of a new black t-shirt that I had just purchased on sale (apparently I missed the "dry flat" instruction so what was once a medium is now an extra small...oops).

Anyways, I remarked about the lady bug to Teddy and Annabel and, perhaps seeing a chance for an even further delay to bedtime, they appeared interested. I tried to pick the lady bug off the shirt to bring it outside but the little shiny bug fell to the floor. Clearly the thing was dead. D-e-a-d. Dead.

All of the sudden, Annabel lost it. She started to wail, "Is he ever going to be not dead? But once he's dead he won't ever be alive again!!! Fings that die don't ever be alive again." Her tears looked so enormous on her tan little face.

At first, I pretty much ignored her. I had a goal: finish the damn laundry before bed. So I told her something about heaven and figured she'd move on with me. She didn't.

She kept crying and I could almost see the thoughts in her head. Thoughts about permanence. About something or someone being gone. Forever. As I let her emotions seep into mine, I could feel my heart start to feel heavy. Sad and scared and heavy.

Annabel kept on asking me whether someone who dies will ever "get not dead again." I had no freaking idea what to say. Still folding and trying not to make a big deal about it, I tried to tell her something about a person's spirit remaining alive. But she didn't understand, probably because I didn't make much 4-year-old sense. I stopped folding.

I picked up my daughter and sat down with her on a big chair in our living room. I hugged her. I told her that sometimes I have thoughts like she was having and those thoughts are so hard. I agreed that it is really yucky to think about someone you love being gone. She settled down a bit.

Still stumped as to how to deal with the sobbing, I went back to fundamentals. My own adult fundamentals, I admit, but it was all I could think of. I told her, "Oh, my Boo," (that's our nickname for her) "Let's not think about years from now. Let's just think about this moment. And at this moment I'm here and you're here and Daddy is here and Teddy is here." She immediately retorted with something about one day us "getting dead" and how sad that would be. She's so darn persistent. And so darn right.

The heaviness in my heart grew heavier.

I held her tight and said I understood her but that sometimes when it's scary to look ahead, we just need to think about what we have at this very moment. I repeated to her that I understood and that I get sad when I think about those things too. I told her that she was brave to talk about it with us because that's hard to do. She cried a little more and may have even started to recognize this conversation as a tactic to further delay bedtime (I don't think it started out that way, but still...). So I shut that door, thank you very much, and carried her upstairs to brush her teeth. A few jokes about Daddy's belly button lint and she was giggling again. Thank goodness for Daddy's belly button lint.

In the end, I have no idea if I made things better or worse for my Boo last night. I just know that as I sang George Michael's "Faith" to her at bedtime, she was smiling. Thank goodness for George Michael too, I guess.

Now if only someone would put away that folded laundry at the top of my stairs. Nah. I'd rather just write about it.

(To be continued...Because Teddy's mind is always going, too...)

*   *   *

For those looking for more information about speaking to children about cancer and death, check out these recent pieces that I really appreciated. 

Boston Globe Article by Kristi Palma, "Talking to young children about death" (I hesitate to include this one because upon re-reading it, I realize that I failed on several pieces of the advice!)

Tuesday, August 4, 2015

Zone Three

Apparently lightening struck the Providence line commuter rail track this morning which means big delays. So I sit on a bench at the station waiting for a train to work and reflecting on the 11 years I have commuted into Boston...

*   *   *

Before I went in to have both of my breasts removed, a weird sort of nesting thing came over me. I wanted to make sure that our house was in order while I was away, which made sense I suppose. But there were a few twigs in my nest with which I became obsessed and those small pieces didn't make much sense at all. One involved my family's coins. In our kitchen junk drawer, we had accumulated a sandwich-bag full of coins and I was set on cashing them in. Granted, this was at a time when doctor appointments and surgery-related preparations took up the bulk of most days, so I have no idea why this mattered to me so much, but it did. 

I had long since given up the exercise of rolling coins so the solution was a simple one. I just had to get to the Coin Star machine at my local supermarket. The machine would take 10% off the top but I didn't mind. I just wanted those coins gone. 

The problem was that every time I tried to get to the Coin Star machine during the week before my surgery, something got in my way. So my bag of coins sat in my car, waiting as impatiently to be cashed in as I waited for my breasts to be removed.

I will never forget a day or two before my surgery when we were out and I told my mom about my coins. I presented it jokingly but she knows me enough to know that deep down, I was serious. 

Of course, she drove me straight to the Coin Star machine and I felt an odd sense of relief as I walked away with a ticket worth about $50. It was probably 0.03% the cost of my surgery. 

I don't know if it's true for others who have gone through a traumatic time, but I have arrived at a few other fixations throughout my cancer experience, most as seemingly insignificant as the bag of coins. I feel the need to write about one more of those now, as I sit still waiting for a train to work. I want to write about my monthly commuter rail passes. 

*   *   *

I have commuted into Boston since 2004. For the first four of those years, I made the trek for law school, driving in on the expressway three or sometimes four nights a week after work for my classes. The traffic was atrocious if I left any later than 4:45 PM but if I left before then I could make my first class that started at six (and maybe even down a grilled cheese from the cafeteria beforehand).

Once I got my first lawyer job, I switched to riding the commuter rail into the city. It always seemed to be an eventful journey, mostly since I had to get Teddy to day care by 7:45 and he has never been easy at getting ready to go anywhere. 

When everything goes smoothly, the commute to and from my office is one hour door-to-door each way. I hated that hour so much at first, as anxiety plagued me. But life experience (plus Effexor) has helped me a lot and I have come to not only accept the reality of a commute but even enjoy it some of the time (not including last winter!). 

After I arrived at my new firm four years ago, I started to get my Zone Three train passes every month. It was my ticket into the city. When a new month rolled around, the previous month's pass was rendered useless and while I like to throw away anything unpurposeful, for some reason I let these train passes pile up. I couldn't let them go.

Every month when I put the new pass into my bag, I had a flash of overwhelming gratefulness and anxiety. I would think things like, I'm still here. Another month cancer free. But will I get a pass next month? Or will something crazy happen, related to cancer or not, that will make this month's pass the last one? It was such a strange obsession and I still don't fully understand the root of it.

What I do know is that my July 2015 pass is the last monthly pass I will buy for a while, or maybe even forever. While I still have to work these first two weeks of August before I begin teaching after that, I decided to forgo the August pass and buy a 10-ride pass on my phone. In fact, since I began this post, I boarded the late train and just flashed the conductor the mTicket app. Activate ticket.

I had no idea where I was going with this post when I started. But as the train pulls into Hyde Park station, just a few stops away from South Station where I will depart, I have found a bit of clarity. 

The truth is that cancer or no cancer, none of us know what the next month will bring, or even the next moment. In fact, in the minute before I sat down on the bench at the train station this morning, I heard about a young mother who lost her husband unexpectedly just weeks after she underwent a double mastectomy for breast cancer. I can't even comprehend it. Or maybe, a tiny, tiny part of me can. And my heart breaks. 

The last three years have taught me so much, including that anything can happen to any of us no matter how good we are or how hard we work. Next month's train pass is never a given. For so long, that thought has terrified me. But in a crazy twist, that thought brings me an odd sense of hope this morning. Because tragedy hits all of us at one time or another. But in the last three years, I have seen countless stories of people who have continued on in the face of those tragedies. They have lived strong when doing so seemed absolutely impossible. 

The hope that churns in me now is supported by the fact that I sit wedged in the corner of a crowded train with hundreds of commuters who are likely late and frustrated, but who neverthless appear calm and patient. It is supported by the fact that I don't have an August train pass, but not because my cancer came back. I don't have an August train pass because I chose not to have one. I chose, instead, to have my own classroom again -- an honest-to-goodness dream-come-true. And believe it or not, that classroom, and that dream, is walking-distance from my house. 

*   *   *

Last stop. South Station. Have a great day, everyone. 

Wednesday, July 1, 2015

Scared of Not Being Scared

I hate to repeat myself and I hate to write blogs that I know are mediocore (at best), but tonight I'm going to do both of those things. In a vacation house full of sleeping people I love, I am wide awake, not only because I was the last one to wake up this morning, but because I'm scared. Yes, I'm scared. Scared for the same reason that I've written about countless times before. Scared that I have cancer in me.

I know the story is getting old, which is why I really don't talk about it with anyone anymore. But this is the space that is always willing to listen. It is the space where I can admit -- despite the redundancy of it all -- that my anxiety once again appears to be buliding as I near the anniversary of my diagnosis.

I thought a lot about this fear and anxiety today in a quiet 20 minutes I had alone kyacking on a lake in Maine. During that precious time, something clicked for me. An epiphany of understanding. A moment when I realized that I'm actually scared of not being scared.

The truth is that in the past few months, I've been relatively not scared of my cancer coming back. I've been particularly busy, which helps, and while there have been blips, overall, I've felt good both mentally and physically. The most valuable proof of this progress is in the fact that during the past few months, I've thought a lot about the future -- even the long-term one -- without anxiously doubting that I will be blessed with it.

Then, the summer arrived. I love the summer. But it also happens to be the season that I still associate with the scariest time of my life. Yes, those memories still weigh heavy with pain.

Today's realization was so simple yet so truly significant. I am scared to not be scared. I'm scared of that fact that I started to let my guard down. I'm scared that I started to feel free again -- free of the burden of cancer. Because the last time I felt free like that was right before I was jolted by the news that I sometimes still cannot fully comprehend.

Out on the kyack today, cruising across the glassy, gorgeous lake, I wondered about the dangers of feeling free. Am I setting myself up for another awful shock? Are these pains I feel in my chest and my neck something gravely significant -- the dreaded nightmare that "it's back"?!? It's come back in so many others, so why wouldn't it come back in me? These thoughts haunt me. Then I hate myself for thinking such negative things. And I wonder if my chest hurts because of the kyacking.

This blog is D+ material but I'm going to publish it anyways. I'm going to publish it because no one ever told me that there could come a time when I become scared of not being scared. But since that's happening to me, perhaps it's happening to others. And even if it's not, I'm sure others nearing their cancer-versary would agree -- it can be such a difficult and complicated time, and hearing others admit that is sometimes all you need to feel like the heavy burden is just a little bit lighter and easier to handle.

Thursday, June 25, 2015

That Fire

I'm one of those A-type-first-child personalities who grew up feeling like it was absolutely necessary to be good at everything I did. I honestly didn't feel any external pressure, but rather, a heavy sort of internal pressure to make everyone happy, to get s&*t done, to succeed. And generally, I did. It may not have come easy to me but I worked hard, really hard, and my teachers--and later, my bosses--had good things to say.

Until last year.

Last year, I got my first negative review at work. It was a few months after I had decided that I was leaving the law to go back to teaching, but still, it stung. Or maybe more than stung. Okay, it hurt.

It hurt for several reasons, including the one reason I want to write about tonight -- it hurt because it was so unbelievably and undeniably true. The oh-so-true part of the feedback was that I get "easily distracted." To be honest, I remain stubborn in my opinion that I did every assignment I was asked to do within the time frame that I was asked to do it, but I concede that the feedback is 110% accurate. And I couldn't be more thankful for having received it.

The truth is, that with the exception of my pro bono immigration work, I have never not been distracted at my lawyer-jobs. When I started at Ropes & Gray, I was distracted by my seven-month old and by trying to maintain a healthy marriage through the turbulent time of transitioning to a demanding and unpredictable schedule. I was distracted by things as small as lunch and snacks to things as significant as my grandmother being ill and dying before my eyes. I was distracted by Scott's passing and by far too many other tragic deaths that followed. I was distracted by an infant who had a never-ending ear infection and who projectile vomited on countless rides to day care. I was distracted by family struggles and celebrations, and by trying to help other people through tough times. I was distracted by wanting to always talk to my office-mate who I loved (and drove nuts), and I was distracted by the realization that when it came down to it, I hated the professional life I had created for myself. I hated the motion-sickness that plagued me on the cab-rides home from the office after midnight and I hated the absolutely awful exit gate in the lower parking lot of the Route 128 train station which often failed to open at the most inconvenient times and thus made me wonder if one day I would just drive straight through it in protest (I confirmed last week that it's still broken). Most of all, I hated that the work day (and night) made me feel like I was dying inside. Like the fire I used to have in me was gone.

Once I moved to a so-much-more-humane law firm culture, I was still distracted, then by a baby girl who I loved as much as I loved her older brother, which I never thought could be possible. I was distracted by books and even by a little bit of exercise. I was distracted by the news that I hadn't followed in years and by wide-awake dreams I started to have again. I convinced myself that everything was good again--that I could succeed as a lawyer in this new place. But deep down, I think I knew I was pretending. Then, on August 8, 2012, I became so distracted by an out-of-the-blue cancer diagnosis that I barely knew what day of the week it was or what planet I lived on.

I tried to fake it at first (not even consciously realizing that I was faking anything). I returned to the office after my first chemo infusion convinced that I would try to work--at least part-time--through my treatment. But then I was allergic to the Taxotere and had my world flipped upside down again. After that, I tended towards far-too-few white blood cells and each chemo round felt like an extremely dangerous adventure. I gave up all my corporate work and focused only on Wendy's asylum case. I couldn't find it in myself to focus on any other work beyond that. I should have known then--if not five years before--that I was wasting away in a place that I didn't belong. I was dying inside, perhaps too literally for it to even be an ironic thing to say. But I was also coming alive.

*   *   *

I read the following quote in a book recently:

Since I have been open and honest with myself and with others about what makes me come alive, I have heard the most remarkable things from people--mostly dreams they have...things they would do, "if only..." If only... I love hearing those stories. Even if part of me is sad when I hear them prefaced the way they always are. The way I used to preface things.

I know now that I have always been a distracted lawyer. But I also know that this morning, I almost missed both of my train stops while finishing Of Mice and Men (I started it Monday). The entire world melted away as I circled vocabulary words and particularly-gripping passages that I can't wait to discuss with my high school English classes. I felt so deeply alive. Cancer was completely pushed out of my mind. It was amazing.

I will take a six-figure pay-cut when I leave the legal profession and return to teaching. It will be okay because Brian and I will work hard to ensure that it is. Plus, excess money, while lovely, has never made either of us feel alive. Ultimately I know that I will never review a contract or sit on a corporate conference call without a million other thoughts or ideas popping into my head and begging me to play with them. But I know that I will walk into my classroom every morning focused on what I'm there to do...teach kids about literature and history. And more importantly, help them try to discover what makes them come alive. Because Howard Thurman is so right about what our world really needs--lawyers who aren't distracted by the paint on the wall, and teachers who pack up their classrooms in June with a fire in their belly about coming back in the fall. I so miss that fire....and I so should have been working in the 45 minutes that it took to write this....

Tuesday, June 2, 2015

The Brave Ones

Today I find myself feeling heart-broken over the news that a young man from my hometown died of a drug overdose last night. I knew this young man only well enough that we would say hello in passing in the school hallways or around town. I can still hear him calling me "Miss Talbot," and I can see him bowing his head with a sort of charming respect, probably because I knew (and adored) his older brother. I remember the last time I saw his mother—how proud she was telling me about her new job that she loved, how proud I was of her for being so strong even after she lost her husband to cancer.

I should be clear—this is not a blog about my hometown’s most recent victim of drugs. I don’t know enough about the victim, or about drugs, to write that piece. This is simply a musing of my sad and numb heart.

Since I made the decision to go back to teaching high school students, I have been following the news on the opiate epidemic in our area. I’ve read several articles, one as recent as yesterday, about families who have lost a loved one to heroin. Today I found myself rereading one such piece.

Over a month ago, I read an article in my local paper about the growing opiate epidemic. Three individuals were interviewed in the article. One gave his name.

When I read this article back in March, I recognized the name immediately, and could even visualize Mike B. in my classroom. I remembered where he sat and what his hand-writing looked like. I remembered his spirit and his never-hidden smile. I remembered his kind soul. When I read Mike’s admissions about his use of drugs, my heart sank. How could this happen? How could someone so sweet get mixed up in something so bad? I was asking these questions rhetorically but also because I wanted the answers.

In the article, Mike talked about losing his younger brother to a drug overdose in 2013. He talked about his own addiction and the pain it caused others. He explained that he had been drug-free for over one year now, although the rest of the story was still an ugly one. Jail. Psychiatric facilities. Guilt over his brother's death.

After I read the article, I wrote to Mike. I told him how brave he was. How proud I was of him for sharing his story. I wondered if I would be as brave as he was if my story of struggle wasn't such a socially acceptable one.  I honestly don't know.

I think that most people like a good cancer-survival story (especially one about breast cancer), and for that reason, I'm not brave for telling my story. But I will tell you who is brave. The brave ones are the people who write about issues that make people squirm—people who write about being transgender, or depressed, or bipolar. People with metastatic disease or rare diseases that nobody knows anything about. People who write about cancers that involve the rectum instead of the breast. People who write about complicated racial and social issues. People who write about suicide, or drug addiction, or failures that they haven’t yet reconciled. People who write about stories that don’t have a clear beginning, middle, and end.

Don’t get me wrong, I am deeply proud of my blog and my book. Those represent my story and in a way, they are living beings to me. But I don’t think I’m brave for sharing them. By sharing my writing, I get only good things in return—emails and texts with words of great support and kindness, interviews with amazing people, invitations to speak and receive awards. But the ones who share the “uglier” stories—stories about heroin addiction, for instance—they risk attaching themselves to a potentially hurtful stigma. A parent brave enough to talk about his or her child’s drug addiction risks judgment (“What did they do wrong that made him become a drug addict?” Answer: In many cases, nothing.). A young ex-addict courageous enough to share his story risks people turning the other way—both on the street and in his life. Even I admit, part of me is scared of people who get mixed up in drugs.

Right now I feel heartbroken for a young man’s family who will need to bury their son, brother, and friend before he had a chance to live his life. I feel overwhelmed by a drug epidemic that is killing our youth, or at best, limiting their potential and their happiness. I feel scared for my own children and for the students I will teach next year. And then there’s that pride and appreciation I feel for people like Mike. People who have pulled themselves up from life's depths and found the courage to talk openly about a problem as ugly as drug addiction. Clearly those stories can’t save everyone, or even most people who fall, or jump, or tiptoe into the deadly grasp of drugs. Those stories can't comfort families who have lost a loved one, or families who know they are in the turbulence that will likely lead to that loss. But those stories are the only place I find hope in tragic moments like this one. Because I don’t know what it’s like to try opiates for the first time or become addicted to them. But I believe that the people who can best lead our communities to the bottom of this seemingly boundless problem are those who do. And those who have the strength and the courage to have an honest conversation about it.

Rest in Peace, M.A. 

Wednesday, May 20, 2015

Proud Mom

I love watching my son play baseball. I love watching because he loves loves playing. As I stand there swatting bugs away and watching him make great plays in the field or make a big hit, of course I'm proud. But it's funny--I mean it when I say that the pride isn't rooted in the fact that he's a pretty good little player. It's rooted in his passion and his love of the game. It's rooted in the fact that he genuinely wants to see his teammates do well. It begins with the fact that despite some blips, deep down, I know that he's a nice kid. I'm so very proud of that.

*   *   *

Last night Brian had a hockey thing so I was alone with the kids. I had recently heard that a woman in my town (who I will call "Maria") had been diagnosed with breast cancer and I wanted to visit her to drop off a card and a book (the card which contained the caveat that I never assume the book will help, but it was worth a shot). I had known Maria years ago but our paths hadn't crossed for a long time.

Teddy took his usual sweet time getting into the car and my next door neighbor was surely horrified at how I yelled at Teddy (for the 20th time) to put the basketball down and get in the frigging car. He did so on the 28th time I asked. Once I calmed down from the whirlwind of getting home from work, wolfing down dinner, and buckling the kids up for our short trip, I started to wonder if I was wrong to bring the kids on this sort of a visit.

I told the kids why we were going to visit Maria--that she was dealing with cancer and that I wanted to bring her a card to tell her that I was thinking about her. They asked me about how I knew Maria and I told them.

With the kids in tow, I made my way up to the front door. When Maria opened the door, she almost immediately started to cry. I had the most vivid flashback of myself doing the exact same thing when I was at the stage she is -- a stage that still includes so many unknowns. Teddy and Annabel stood behind me as I hugged Maria. Through her tears, she asked me if she was going to be okay and I assured her she would. I couldn't see my kids but I knew that they were watching.

I hadn't expected Maria to want to talk to me but she did, so we talked, probably for a solid 30 minutes. Meanwhile, my kids played together like angels on Maria's front lawn.

Now, I love my kids, but I would definitely peg them as of the "high maintanence" variety. They don't typically just entertain themselves, and if they do, it's not usually in a calm and peaceful way. But for those 30 minutes, they did just that. They were perfect.

When we got into the car, I thanked them for being so good. "Why was your friend crying?" Teddy asked me, very concerned.

"Because she has breast cancer and when you first learn that you have cancer it's very scary."

"Were you scared?" he asked.

"Yes, I was. And sometimes I still am. But I also know that I got very good medicines and I'm very lucky for that."

Then we drove on to a nearby field and played some catch.

During that catch, I thought about how well Teddy can throw and catch the baseball. But that wasn't why I felt an overwhelming sense of pride in him. I felt an overwhelming sense of pride because as much of a nudge as he can sometimes be, he also recognizes immediately when someone is in pain. And I can tell it hurts him to see someone suffer.

I can't be certain of it, but I'm pretty sure that Teddy will never forget watching me hug Maria on her front step as she cried into my shoulder. And I'm pretty sure that Teddy was on his very best behavior for the rest of the night because he knew that by doing so, he would help someone in pain. That is what makes me burst with pride for my son. Because while a great catch or a big hit are fun, in the end, it's kindness that really matters.

Wednesday, May 13, 2015

Hope, Panic, and Preparation

For the past 16 days I have been fine. I haven't worried much about Elaine calling with news on my genetics testing. After all, she said it would be "two to four weeks" before I got the results back. I've been around the medical world long enough to know that rarely (if ever) does anything come back earlier than expected so for the first two weeks after April 27, I successfully put the issue out of my mind. I went about my business as usual, which lately, has been so wonderfully unusual. I've worked hard on the book launch and on my job search, somehow finding time for the job that actually pays me. I've watched Teddy play baseball and lacrosse and taken Annabel to gymnastics. I got a precious two nights away for Mother's Day with my mom, aunt Helen, and cousin Kirsten. And none of it has been ruined by the dread of hearing whether my TP53 gene, or any other gene for that matter, held a mutation that led me to get breast cancer at such an unusually young age.

Last night my mom thoughtfully acknowledged how hard it must be to wait. But I had to admit that it wasn't that hard because it really hadn't been. Until this afternoon.

This afternoon, something hit me and whatever-it-was almost brought me to tears while I tried to work on a project that really needed my attention. I think it started with the realization that it could be any day now that "Unknown" or "Blocked" rings me with the news. As I tried to collect myself and get back to work, I ended up taking a short break to figure out what the heck I was feeling and why all of a sudden I was feeling it.

In those minutes of deep thought--the kind that makes everything else in the world fade to the background--I realized something that I had never comprehended so deeply before. Ironically, it had to do with hope--a concept I pretend I know a lot about. I realized that balancing hope and acceptance is an extremely difficult thing to do.

The truth is that today, I panicked. I panicked that I wasn't ready; that if the news came today that I had a genetic mutation that predisposed me (and perhaps even my children) to cancer, that I wouldn't be prepared. Because I'm not prepared. And I really like to be.

That's one thing that's so hard about hope. If you hope for something, it's hard to also prepare yourself to accept the reality of the outcome-gone-bad. So while I have been hiding from that reality or hoping that the news comes back "good," I haven't at all prepared myself for the reality that today or tomorrow or the next day, my life could take another violent turn (the kind that gives you serious whiplash). Then again, how does one prepare for those types of turns? How do we brace ourselves for bad news while hoping for the best? It's not an easy thing to do, and in the midst of all of the blessings and excitement swirling in my life right now, I panicked today at the thought that I have completely failed to do it.

Friday, May 1, 2015


Since last September, I have been working off-site at a client who happens to be located in Boston's Longwood Medical Area. This temporary change of work location has made getting to medical appointments and other meetings at Dana-Farber very convenient, if we forget this past winter, of course.

Yesterday after work, I set out for Ruggles station to catch my train home. I had a quick errand to do on the way so I left a few minutes early. (I had been in touch with Connie Britton's publicists begging her to autograph a "Hope is" sign for the book launch party and I needed to FedEx another package to them since they hadn't received the first or the second one I sent.) I dropped the package into the nearby FedEx box and made my way to Huntington Avenue.

Eager to check up on my dad who recently injured himself, I untangled my earphones and dialed Family on my phone. My mom gave me the update as I walked -- not great news for my dad but not tragically awful. I walked across a side street that emptied out onto Huntington and then, a few seconds later, I heard a loud SCREECH and a dreadfully loud BOOM. I turned around to see a red SUV flip and tumble onto its roof just feet from the sidewalk. In that split second, I instinctively thought something like, "Wow, that car flipped over so easily!" It was such a strange initial gut reaction.

Not a second later, adrenaline rushed and I ran over to the car, as did several other people in the vicinity. I could see the passenger suspended, clearly buckled in to his inverted seat. I immediately told my mom that I was fine, that there had been a terrible accident close by, that I had to go. I hung up and called 911 while a few good samaritans talked to the young male passenger and then began to try to help get him out of the mangled vehicle.

Within seconds of hanging up with the 911 operator, sirens sounded. I couldn't help but just back up and stare at the most surreal scene of the sidewalk I had just crossed. I felt like a ghost. I didn't want to look but I did, desperate to see where the driver had landed, as he wasn't suspended in a seatbelt like the passenger had been.

When I finally saw another person (who I think was the driver), I felt sick to my stomach. He was lying still on the floor of the SUV (i.e., the roof) in the back seat. There was nothing I could do -- nothing anyone could do -- as the sirens got closer and the police cars zoomed up the wrong side of Huntington Avenue.

I decided to continue on, stunned and shaken and completely helpless. I called my mom back to make sure she knew I was okay. Then I just kept walking, shocked, once again, by how vulnerable we all are as we crawl like babies around this crazy planet.

*   *   *

I wrote the prior paragraphs this morning. I have been working on the paragraphs below, however, all week; unable to make any progress on them not for lack of trying, but for lack of clarity in my own head. For some reason, however, the commute home yesterday made me want to, or perhaps need to finish what I had started.

*   *   *

When it comes to my cancer treatment, there are still a few things I'm yet to do -- "loose ends," if you will. The first one I'll probably leave undone forever. That would be completing the final step of my breast reconstruction process -- yes, nipples. I don't have them and while I figured that at some point I'd get them tattooed on, or stuck on, or whatever-ed on, I really don't care enough to make the time for whatever it would take to do that. I'm fine with the robotic look of my chest and the only other person that sees them doesn't seem to mind, either.

Another loose end, however, needs to be addressed. It involves genetic testing. 

Back in August 2012, I wrote a blog on this issue. I realized then and realize even more now that perhaps the scariest thought that cancer has induced in me is that I passed a genetic defect down to my children which could cause them to be at a high risk of cancer, perhaps even childhood cancers. I can barely type that sentence without tearing up.

When I met with Dr. Bunnell for my most recent six-month appointment, I asked him about genetic testing. I didn't remember exactly what I had done two years ago but I had heard something about genetic testing at a Patient and Family Advisory Council meeting and I wanted to get things straight.

Dr. Bunnell scrolled through my electronic health record (and scrolled and scrolled...) and finally reached a letter I had apparently received in August 2012. He printed it out and handed it to me. I don't have a single ounce of recollection of the letter, but given the Ativan I was sucking down at the time, I'm not surprised.

After some discussion, Dr. Bunnell recommended that I pursue further genetic testing. He explained that given how rare it is to develop my type of breast cancer at my age, it would be useful to check for genetic mutations that could lead to other types of cancer. If such mutations exist, I would get frequent screens (for example, colonoscopies) and maybe pursue further surgeries (including perhaps a hysterectomy). Fun stuff.

My appointment with the genetic counselor was scheduled for 8AM this past Monday. Brian and I drove in together, hit a ton of traffic, and were 20 minutes late. I almost started to cry on the way in but I couldn't tell if it was because I hate being late for important things, or because I was so anxious about the appointment, or because I was so sad that April vacation was over. It was probably a combination of all three, but I held it together.

The genetic counselor, Elaine, was excellent. She was the same person I had seen at the end of the very first day I visited Dana-Farber, but I didn't remember her in the slightest. Nevertheless, she was kind and clear and empathetic. She explained stuff about genes and about what they would look for if I pursued the possible testing. She answered my questions and didn't push me into anything. I appreciated that, and her, even if I couldn't find it in myself to look grateful.

The main issue we discussed at that appointment involved the "TP53" gene (often referred to as "P53"). According to the sheet Elaine printed out for us, "The TP53 gene is associated with Li-Fraumeni syndrome (LFS)." Basically, if they find an alteration in my TP53 gene, I have LFS, and that's not good.

The sheet explains, "Not everyone who has an altered gene will develop cancer." But a few lines later it reads, "Men and women with an altered TP53 gene have about a 90% chance of developing various forms of cancer, especially cancers of the soft tissue and bone (sarcomas), brain tumors, adrenocortical tumors, and acute leukemias." That emphasis around "about a 90%" was on the sheet -- I sure as hell didn't add it myself.

Later facts on the sheet are equally as terrifying -- "Women with an altered TP53 gene have a high risk of developing breast cancer, often at unusually young ages (prior to age 40) as compared to other women with breast cancer." Well that sucks.

What sucked even more was this -- "Both men and women carrying an alteration in the TP53 gene have a 50% (1 in 2) chance of passing it on to their children," and this, "In about 7-20% of people with LFS, the alteration in the TP53 gene is not inherited from their parents, but instead occurs as a new genetic change in that person." Well F*&K.

I burst out crying to Elaine when she brought up testing our kids if the results show I have an altered TP53 gene. I can't even fathom how awful that would be. I told her that Brian and I had decided not to get them tested even if I have LFS until there was something we could do to help them. Elaine explained that that time had come. She explained that the last few years have produced data showing that full-body MRIs for children with LFS can help detect cancer early and treat it more effectively. I couldn't even look at her after she said this. More tears.

A minute later, I got it together and told Elaine, "Let's do it."

She explained that if it's not the right time we didn't have to do it now.

"It's the right time," I told her, outwardly confident but inwardly terrified.

A short time later, they drew a vial of my blood, put a sticker on it, and sent it off to be tested. As I write this, I wonder if a lab somewhere has already begun to analyze my genetic code for defects.

*   *   *

Nowadays, I don't think too much about why I got cancer, just like I don't walk down the Boston sidewalk worried that a freak accident could flip an SUV on top of me. But every now and then, it happens -- a car flips or a paper about TP53 falls into my lap. And I stare -- scared, helpless, and uncomfortably grateful -- even though I really just want to look away. 

Sunday, April 12, 2015

When I grow up

I used to be a teacher. In fact, I knew I wanted to be a teacher when I was in kindergarten. My sister Rachel, just a year younger than me, was my very first student. She grew up dutifully humoring me in "my classroom" (a makeshift area of our basement) where I taught her everything I had learned in school that day. I'd like to attribute her true genius and great professional success to me but I know it wasn't that. She was born brilliant.

When I was in college, I never brainstormed about what I wanted to do when I graduated. I just knew that I was going to be a teacher. I neglected to open envelopes about Rhodes Scholarships and Fulbright opportunities because they would only sidetrack me from what I wanted more than anything in the world to do -- have my own classroom and teach in it.

My official teaching career began with professors at Bowdoin who I wanted to be like -- both personally and professionally -- and then with a mentor teacher who is one of the most successful people I've ever met. Hank Ogilby teaches Social Studies at Freeport High School in Maine. He is far too humble to know it, never mind admit it, but I know for a fact that he makes the world a better place every single day. He's another person I want to be like.

When I got my first teaching job, I felt like a dream of mine had come true. I was only 22 years old when I took a job at my alma mater. I didn't take a job there because it was the high school I had graduated from but rather because I honestly believed it was the best teaching opportunity. More than that, it felt instinctively right. 

I've written in this blog and in my book about how and why I left teaching to become a lawyer. For countless different reasons, I will never consider that decision a mistake. Nevertheless, I am ready for my career to continue to evolve, this time away from the law. While I still plan to remain a member of the Massachusetts bar and take asylum cases before the immigration court, I am planning a shift in my "day job." Because I can't think of any way I'd rather spend my days than in a classroom talking about books and writing with high-school students. 

*   *   *

A month or so ago, it came time for me to draft the "About the Author" page of my book. That one paragraph took me over two hours to write and another hour to edit. I had written an entire book about myself but when it came time to summarize who I was into a paragraph, I had absolutely no idea what to say. Sure, at that very moment (and this one), I was officially a lawyer working for a law firm. But I had a dream taking shape in my head. I ended up explaining:
That first sentence was what had stumped me. I was nervous about being so honest, but I eased my mind with the most important test that I run all of my writing through before I publish it -- "Is it true?" Yes, it was true. I am a lawyer who aspires to be a teacher. 

*   *   *

Last week I applied to two jobs that start this fall -- both teaching English & Language Arts in a public high school. In the cover letter of one, I described the job as my dream job. It really is. And if cancer has taught me anything, it has taught me that it's okay to admit a dream and have a sense of urgency about it.  

I get a kick out of the many people who think that I am going back to teaching because I will have more time with my kids or have my summers off. As much as I love my kids and the summer, neither one of those reasons were a motivation for the change, mostly because in my current job I see my kids every morning and every night and we have wonderful summers together. One thing I wish more people knew about teachers is that most of the best ones never even considered summers off when they decided to enter the profession. Oh, and most of them take second or third jobs -- and summer jobs -- to make ends meet. 

In a way, this post has been almost one year in the making as it was last summer when I decided that I wanted to go back to teaching. I remember the exact morning it all began. It was the morning that I learned that my friend Meghan's breast cancer had metastasized to her lymph nodes and her bones. That morning changed me. 

For one, Meghan's news made me face the reality more than ever before that my cancer also could come back. I didn't talk about it then and I rarely talk about it now, but I know in my gut it's true. I also know that if my cancer does recur, I want to face it while already in pursuit of those most important things I want to accomplish in my lifetime. And I knew that morning last summer that my dream wasn't to be a corporate health care lawyer. Honestly, it never had been. 

One summer afternoon while talking to my mom about my realization, I told her that I wanted to make a change; that as great as my workplace was, I still felt unfulfilled at the end of the day. She patiently listed dozens of lawyer jobs for me to consider. But every one of them left me feeling empty inside. Until we got to teaching. 

"How about teaching the law?" she suggested. 

"Hell no!" I replied. "I don't like law students!" I was partly joking, partly not. 

"How about teaching high-school kids again?" she asked. I hadn't even considered it. I figured that for financial reasons, I couldn't consider it. But my heart immediately welled up with the excitement and fullness that I remembered from years ago when I received rosters of my new classes, or Xeroxed a quiz, or started a new lesson, or wrote on the whiteboard, or saw a concept click with a student (I could go on). I knew it then. As clear as the summer day. I wanted to be a teacher. 

Of course, the frilly thoughts of "following your dreams" are soon followed by reality. In that reality, I loved the people I worked with and they had been so good to me through my illness and treatment. I felt a sense of duty to stay at the firm and somehow "repay" them. In addition, I had a pro bono immigration case that I had to finish and that case wasn't scheduled to be heard in court until April 3, 2015. I couldn't leave until my client was granted asylum in the United States. The week before last, that happened. 

Perhaps unsurprisingly, one of the harshest realities of leaving the law for education is a financial one. To better understand the financial implications of my decision, I did the sensible thing -- I downloaded a terrifying app called "Home Budget." One sleepless night last summer, I plugged in all of our family's expenses (gulp) as well as two teaching salaries (Brian's real one and my dreamed up one). There were a lot (like, a lot) of red numbers on that screen and at one point in the wee hours of the morning, I almost cried. But I plugged in a second job for myself and then a third. I even caved to the sad reality that if I made this leap, we couldn't afford to adopt a child any time soon. Eventually however, I had faith that with a lot of hard work, it could be done. I could be a teacher again. And in the summers -- between outings with Brian and the kids -- I could continue to pursue my other dream. I would write. 

Since I'm on the awkward and uneasy topic of money, I thought this would be a good time to explain that I never ever want my book to be tainted by financial motivations and I have never (and hopefully will never) think of my book as a way to make money. I didn't even think to enter potential royalties into the dream-crushing-home-budget app. 

I do, however, believe very deeply in the power of the book's message -- that hope really is a good breakfast, but that we have a lot of work to do before dinner. Because while hope is one of the most powerful gifts I have ever received, there is so much progress to be made in so many different fields -- from environmentalism to medicine to politics to education. That work cannot be fueled by hope alone. Indeed, I believe now more than ever that such work must be fueled by people who feel in their heart and soul that they were meant to contribute something to that particular space. And then, when the time is right (and perhaps scarily uncomfortable), they take a leap of faith. Because when I grow up, I want to be a teacher. And cancer, it turns out, helped me grow up. 

Monday, April 6, 2015

The Book -- Now Available!

Talk about a dream
Try to make it real

~ Bruce Springsteen

After two and a half years of writing and editing, 
my book is now available!

Click HERE to purchase your copy. 

Saturday, April 4, 2015

Erica's Heart

I love the story of how I met Erica Shea, although until now I have shared it with only a few people. It was the Saturday after this past Halloween and I was in the mood to purge stuff from my house. It's an urge I get often -- to simplify and, like my friend Katie says, prove that less is more. Anyways, I figured it was time to get rid of the kids' old Halloween costumes. I had been saving them in hopes that one day we successfully adopt a third child but I figured that by the time that happens, it would just be easier to buy him or her a new costume.

I laid out the costumes on my living room floor, took pictures of them, and posted them to my town's yard sale page on Facebook. Almost immediately, a young woman named Erica Shea commented and said that she wanted all of the costumes.

I recognized Erica's name because I had followed her story through the town newspaper. She was a fellow cancer survivor and I had been so taken by her story that several months prior I had shared an article about her on Facebook and begged people to become organ donors.

Erica had been diagnosed with Hodgkin's lymphoma when she was just 22 years old. As a result of her aggressive chemotherapy regimen and, four years later, a complicated pregnancy, Erica fell into heart failure. In December 2013, Erica was placed in a medically induced coma after she was diagnosed with sepsis -- a critical condition that can precede organ failure. Erica underwent open heart surgery in January 2014 so that doctors could insert a ventricular-assist device (LVAD) that would support Erica's heart function and blood flow. At that time, Erica was also placed on the transplant list. For the last 16 months, she has desperately awaited a new heart.

In the meantime, life has not been easy for Erica or her husband (Dave). Erica has been in an out of the hospital for countless different reasons while Dave has worked as many overtime hours as possible to bring home enough money for Erica's medications and everything else their family needs. Erica wants to work but given all of her medical appointments and limitations, it's next to impossible. So Erica has done all she can to use her photography skills to help her family. (In fact, I hired Erica to take the "author photo" for the back of my book not only because she's great at what she does, but because I wanted Erica's name on the cover.)

One of Erica's hospitalizations occurred over this past Halloween. Erica was stuck at Tufts Medical Center while other moms and dads took their kids out trick-or-treating. The nurses at Tufts arranged a very sweet version of trick-or-treating for Erica's son (Ryder), but as Erica said, it just wasn't the same.

As she and I exchanged messages on November 1, 2014 about how I could get her our old costumes, I finally told Erica that I knew her story, that I prayed for her (in my own way), and that I was so sorry cancer had done this to her. Erica maintained the most positive attitude about everything. In fact, she seemed giddy as she told me that wanted all the costumes because she was going to try to make up the holiday she missed by dressing up with Ryder in the week ahead. I loved her energy and the fact that she wasn't going to let the holiday pass without celebration. I just wished so badly that she could have the trick-or-treating part with her three-year-old. Even I got that on my most awful Halloween.

The trickier part, however, was that Erica was scheduled for more tests that upcoming Tuesday and bad results on those tests would mean another hospitalization. There was a small window -- Monday night -- and I had an idea.

I explained to Erica that Brian and I had somehow landed a house in what I am convinced is one of the most generous neighborhoods on earth. I asked her, "If we could arrange for another Halloween, would you want to take Ryder around?" As much as I wanted to do this for Erica's family, I expected her to say No. But Erica did the best thing ever -- she said Yes! And just like that, with one Facebook post to my neighborhood page, over twenty houses near mine redid Halloween for a three-year-old they didn't even know.

When I got home from work on Monday November 3rd, Brian had the kids dressed up in costume again. Teddy was a hockey player and Annabel was wearing her PawPatrol Ryder sweatshirt (Brian had made her a little badge, too). Dressing up as Ryder from her then-favorite TV show was her idea after she learned that Erica's son was also named Ryder. I just loved that.

The next hour or so was one of the most precious hours of my life. I had the pleasure of pushing Erica's wheelchair while Dave took Ryder up to my neighbors' front doors. As I stood back and watched this amazing group of people make Halloween again, I was in awe of the goodness in the world. Not only did my neighbors fill the candy bowls again, but they gave Erica hugs and cards and best wishes. One of my neighbors who had taken down her Halloween decorations put them back up again. Others put on Halloween t-shirts and costumes. I can't lie -- it was kind of magical.

Since that awesome November Halloween, Erica and I have kept in touch. But why do I tell her story now, you may ask. Because I feel helpless and this is the place I turn when I feel that way.

*   *   *

In order to do everything he could to help his family, Dave worked hard last year. He earns $19 per hour as a carpenter and earned around $50,000. Much of what he brought home went straight to caring for Erica, but the Massachusetts health insurance program didn't seem to care. Because today Erica learned that on April 30, 2015, because Dave earned slightly more than the qualifying number, she will lose her current health insurance coverage. With a lapse in coverage would come the most devastating blow -- Erica would be removed from the heart transplant list. 

There are other options for Erica, as she explained to me when we spoke today. But those options are simply not viable. She could get onto a health plan through Dave's work but it will cost them $600 per week, which would be Dave's entire paycheck. Erica is ready to go to work to help, and she has explored working on an assembly line in a factory. But as I told her last week, I cannot fathom her doing that job with the LVAD pack, shortness of breath, and all of the other crap she has to endure. There has to be another way. 

Let me be clear that this post is not an "ask" for anything. I do not ever want to use this space for favors. Instead, this post is about awareness and about hope. 

I want people to know that the brutal effects of cancer don't end when cancer goes away. The medications used today, while often effective, can be extremely harsh. They can leave people like Erica with a heart that no longer pumps enough to keep her alive. We need to do better and I am so hopeful that great scientists and doctors are in labs and hospitals right now trying to do just that. Unfortunately for Erica, however, the damage is done. 

Erica's story is also a great example of why I named my book what I did. Perhaps better than anyone, Erica knows what it means to have hope. But on April 30th, no matter how much hope the whole world may have for Erica, she will lose her place in line for a heart if she is dropped from MassHealth without any other insurance. We have to do something more. I wish I knew what that was, but I don't. So I'll do what I know to do. I'll write. 

Over text today, Erica told me something I may never forget. She said that her illness has never made her feel helpless -- "not cancer or heart failure." "But," she explained, "feeling like all my fighting was for nothing if they are going to cancel my insurance is so discouraging." It sure as hell must be. 

I wish my neighborhood could help solve Erica's health insurance problem as easily as we threw together another Halloween. But unfortunately we can't. I guess all we can do is pass along Erica's story to anyone who may be able to help Erica navigate the health insurance system through this nightmare. Because she cannot lose her place in line for a new heart. Ryder's next Halloween with his mom depends on it. 

Erica after having internal defibrillator placed -- June 2013

Ryder Shea
Pre-op for LVAD surgery

Right before surgery to place the LVAD 

Erica and Dave -- May 2014

Full Circle (Like an Easter Egg)

I woke up early this morning to run with a dear friend but it's absolutely pouring outside (with bouts of thunder and lightening) so we postponed our date and I sat down at my computer instead. I needed that run to sweat out some crazy with someone who gets it, but the respite I find here will help too.

Later this morning we are scheduled to hold the third annual egg hunt at our house. We have over 1,500 pieces of candy to distribute to dozens of little ones who will arrive with empty baskets, and we even shoveled snow off the lawn to make it more amenable to the event. Me and the kids went to sleep last night giddy about it (Brian's slightly more mature) and since my invitation specified that we will hold the egg hunt regardless of rain, snow, or mud, I figured it was a go no matter what. As I typed that last sentence, thunder rumbled in the distance.

*   *   *

Sometime after the egg hunt today, I will upload the final draft of my book to the publisher for printing. Last night, as I sat with the proof of Hope Is a Good Breakfast on the sofa, I almost started to cry. I can't explain it, and I never ever expected to feel this way, but I'm terribly ambivalent about parting with that final draft. I get a lump in my throat just thinking about it.

Once the kids were asleep last night, I finally got up the guts to tell Brian out of the blue, "I'm sad it's going to be done." He knew I was talking about my book. And he understood. It was so helpful that he understood because I can't even articulate it.

I've sat here a while between that last paragraph and this one. I've thought about so many things -- how the book began in the very seat I sit in now, also in the wee hours of the morning. I've thought about incredible events of this past week, including a huge win for an awe-inspiring asylum client in court yesterday, a meeting with amazing cancer researchers in a lab at Dana-Farber, two dear friends landing the jobs of their dreams, selling out of 400 tickets to the book launch party, and even receiving an autographed hope message from Donald Trump. I've thought about the thunder and the lightening outside and what we'll decide about the egg hunt. I've thought about ditching this blog to give a few sections of the book a final read. And I've thought about getting cereal because I'm hungry. When I started this blog, I'd sit here hungry too, but I knew I could never stomach breakfast.

It may sound conceited to say that I love something I made. But I love my book in ways I can't even explain. I love my friend who took the cover photo in the minutes after my head shave. I love that two other incredible people designed the cover and took my author photo. I cherish the friends I've made while editing the text and while planning the party to launch it. I love the people I wrote about and the experiences they gave me. And I am eternally grateful for every person, dollar, and decision that made it possible for me to live long enough to write it.

I don't know what will happen with that book, much like I have no idea if the thunder and lightening will stop so we can have our egg hunt. I do know, however, that at this very moment, I have found comfort in the quote that I chose to open Part One of the book:

There will come a time when you believe everything is finished. 
That will be the beginning. 
(Louis L'Amour)

Over a year ago when I chose that quote for the opening of the first part, I conceived of it in a completely different context. But this morning, as my husband and two beautiful kids sleep upstairs, and as the rain falls lighter outside than it fell when I started this post, I feel great peace in those words. Because today, after some form of an egg hunt somewhere, my book will be finished. And an awesome adventure will begin.

Wednesday, March 18, 2015

Colds and Connections

Yesterday when I was done reading this recent New York Times article by Suleika Jaouad titled "Lost in Transition After Cancer," an odd feeling remained in the pit of my stomach. I couldn't identify the feeling and I didn't even take any conscious time to think about it. I agreed with basically everything Ms. Jaouad had written but it wasn't a feeling of connection or even one of sympathy. It was an uncomfortable feeling that made me feel icky inside and it wasn't until today that I recognized what the feeling was. It was jealousy. 

* * *

I returned to the article this morning before I left for a doctor's appointment and again while I sat in my primary care physician's office waiting for my name to be called. I had booked an appointment this morning after two days and nights of a cough that made my chest hurt and my worry gauge almost explode. More-than-halfway convinced that my lungs were riddled with tumors, I decided I needed someone to take a listen and a look. Knowing how terrified I was, my mom came with me.

It's embarrassing for me to even admit that. That at 35 years old, I need my mom to come with me to get a cough checked out. But I was so scared that it would happen again -- that I would be alone at Dedham Medical Associates receiving the news that I had cancer. I needed her there with me and she knew that without me even having to so much as hint at it.

When you first pull into the lot of the DMA medical building, you have the option to turn right into a separate parking lot. It felt like my mom was slowing down to turn into that lot and I almost panicked. She had no idea that on August 8, 2012, while a radiologist told me I had cancer, my car sat parked in that lot on the right. My mom didn't know that I sat in my car in that lot when I called my colleague Mark and told him that I likely had breast cancer and wouldn't be coming to work that day. Thank goodness I didn't need to bring all of that up because my mom never ended up turning into the lot on the right and instead parked in the front of the building. I felt like I had dodged a bullet. (Sensitive much?)

As I walked up to the entrance, I decided something. I didn't want to visit this building ever again. It was full of too many bad memories and emotions. I announced to my mom while we sat in the waiting room that I hated that place. That I wanted to switch to a doctor in a different building so I would never need to come there again. She said she understood.

As I mentioned before, while I waited to be called back to see the doctor, I returned to the article by Suleika Jaouad. I reread the following passage more than once:

It took me a long time to be able to say I was a cancer patient. Then, for a long time, I was only that: A cancer patient. Now that I’m done with my treatment, I’m struggling to figure out who I am. On paper, I am better: I no longer have cancer, and with every passing day I’m getting stronger. The constant flood of doctor’s appointments, blood tests and phone calls from concerned family and friends have trickled to a slow drip. But off paper, I feel far from being a healthy 26-year-old woman.

My disease has left countless invisible imprints in its wake: infertility, premature menopause, a thyroid condition, chronic fatigue and a weakened immune system that sends me to the emergency room on a regular basis. And that’s just the short list. Then there are the demons of depression and the fears of relapse that sneak into my head just when I think I’ve gotten a grip. The rattle of a cough in my chest. A strange bruise on the back of my leg. A missed call from my oncologist. Each of these triggers rips me out of my fragile, new reality leaving me to wonder: What happens if the cancer comes back? Will I ever feel normal again? And most daunting of all, how do I move forward with my life?

"The rattle of a cough in my chest." I think that's the line that made the jealousy give way to the connection. 

I started to unpack this in my mind between being weighed and allowing the nurse to take my vitals. I realized why I felt jealousy towards Ms. Jaouad when I first read her article. It was because I felt like she was infringing on who I am. I know, it's ridiculous and self-centered but it's true -- I felt something like, I'm the young woman who writes about cancer! You can't be that too, especially because you do it way better than I do! Oh, and you're gorgeous. Urgh. 

When I let go of that yucky feeling and reminded myself that it's a damn good thing that I don't have a monopoly on writing about the cancer experience, I was able to feel comfort by Ms. Jaouad's words. It was a deep, sincere comfort for which I am now so very grateful. 

*   *   *

As the nurse (who I will call "Annie") prepped me for the doctor, she asked me what I had come in for. 

"A cough," I explained trying not to cough. Then the room started to spin and before I knew it I was crying and telling her how scared I was. That I was just two and a half years out of a cancer diagnosis and I was terrified that the cough was something so much worse. 

All of a sudden, Annie's demeanor changed. She told me that she understood. That she had breast cancer more than 20 years ago. She hugged me and agreed that it was so scary but that I would be okay. I cried more, not out of fear so much anymore, but because all of the sudden, I felt hope -- hope that not only could I survive this appointment but that I could live to say "I had cancer 20 years ago."

Annie and I talked a while longer. She told me that her twin sister and also her other sister had breast cancer over 20 years ago. That they were all doing fine. She asked me what treatment I received and when I got to the Herceptin part, she lit up. "Herceptin is an amazing drug," she exclaimed. Annie's sister was HER2+ like me and Annie clearly knew the significance of Herceptin. It's strange how immediately connected I feel to people who understand that. 

Once I was able to collect myself, I tried to tell Annie what her kindness had meant to me. But I don't think it's really possible to articulate that. Hope is too powerful of a gift. 

*   *   *

My PCP came in a few minutes after Annie left. Dr. K was brilliant. Empathetic, compassionate, honest, and kind (in a way like she really means it, too). She looked at my eyes, nose, and throat. She listened to my heart and my lungs and she felt my glands. Dr. K asked me lots of questions and I felt comforted by those. Ultimately, she told me that Sudafed would likely do the trick. Basically, I have a cold. 

I know I've written some version of this post about 12 times before. I know that none of those pieces have been as eloquent as Ms. Jaouad's article and I know now that that's okay. Unfortunately, lots of people get cancer and fortunately, many of those people write about it. I think some of my jealousy towards Ms. Jaouad stems from the fact that I, too, am still trying to figure out who I am after cancer. 

*   *   *

As I left the doctor's office today, I decided that I'm not going to switch to a new doctor. I want to say Hi to Annie next time I'm there and I'd be foolish to leave a doctor who cares the way that Dr. K does. 

In the end, I can get over what the bricks and the tar of that medical building remind me of. I can even dispose of jealousy once I recognize it. And this is all a very good thing. Because human connection is one of the most hopeful things out there. 

Monday, March 16, 2015

"Stop at Nothing"

The proof of my book has arrived and I can't begin to explain what it feels like to hold it. Every morning I cherish my time on the train to give it one last round of edits and every night I sit with it on the sofa and do the same.

While I work on my book, Brian often watches documentaries -- many of which are about something to do with sports. Last week he started to watch Stop at Nothing: The Lance Armstrong Story. Little can distract me while I work on my book but that documentary proved to be one thing that could. About 20 minutes into the film, I gave up trying to focus on my book and over the course of a few evenings, Brian and I finished watching the film.  

I still can't fully articulate my reaction to the documentary, although I am clear about a few emotions that surfaced in me after I learned more about Lance Armstrong. Those include utter disappointment, anger, and frustration. In fact, there was some archival footage of Lance Armstrong that made me want to throw something at his disgustingly arrogant talking head. 

There is so much about the Lance Armstrong story that frustrates and upsets me including the brazen lies, the win-at-any-cost attitude towards sport, and the way that he destroyed (or tried to destroy) anyone who questioned him. But the parts that hurt me most were those that involved Lance Armstrong's references to himself as someone who gives cancer patients hope. It feels like pure betrayal.

Anyone who has followed the Facebook page of my book knows that I have been more than a bit focused on the concept of hope lately. The book's title (Hope Is a Good Breakfast) lead me to wonder about how others conceive of this most important gift and so I've gathered many perspectives on the question. I have been floored by the responses received from so many different people including former students, friends with metastatic disease, professional athletes, Emmy-winning journalists, and brave men who lost multiple family members in Hurricane Katrina. These responses have made me smile and cry, and feel more inspired than ever before. They have been heartfelt and honest. They have been everything that Lance Armstrong is not. 

*   *   *

This morning on the train I happened to reach the chapter of my book that describes why I still wear my yellow Live Strong bracelet despite my disgust with Lance Armstrong. That chapter was born from a blog I wrote on the subject in October 2012. I couldn't help but notice the huge irony in the fact that just this morning, I had taken my bracelet off for the first time since just before I wrote that blog. 

Taking my bracelet off now didn't mean that I had left the Live Strong message behind because this past Christmas, my sister gave me a beautitful bracelet engraved with "Live Strong." I've worn her gift ever since, but I wasn't ready to let go of the yellow rubber bracelet until this morning. 

I have to admit that Stop at Nothing made me so disgusted with Lance Armstrong that even the explanation I provide in that earlier blog and in my book about what the yellow bracelet means to me can't separate me enough from the fact that it was Lance Armstrong who made that bracelet popular enough that I found it. 

*   *   *

I've written before about the work I do to help people obtain asylum in the United States. I am working on two such cases now, with one that will go before the immigration court in just a few weeks. Like all of my prior clients, this one (who I will call "Ella") has been through hell. If sent back to her home country, there's a very good chance that she would be seriously harmed or even killed. 

Last week I sat with Ella over a burrito after an intense meeting during which my fantastic colleague and I prepared her for the upcoming hearing. I had been waiting for the right moment to give her a gift and I had finally found it. So I handed Ella her very own Live Strong bracelet. 

Ella didn't know any background on the bracelet so I told her a little bit about what those two words meant to me (I didn't even need to mention cancer). She loved the bracelet and the meeting we had a week later was one of our very best. Ella was stronger than I had ever seen her and afterward when I asked her half-jokingly what had gotten into her, she explained with a smile, "I moost leev st-rong," she explained, so truly proud of herself.

*   *   *

I'm in the proofing stage of the book and so I wonder if I should even bother revising the whole chapter about the yellow bracelet based on a development from this week. I think I just may have to leave that discussion for the sequel. 

In the meantime, I'm blessed to be able to turn back to this space for some respite. For some venting about Lance and some reflection on Ella. 

In the end, I finally may be done with my own yellow bracelet. Thanks to my sister, I have the Live Strong message tangibly with me even when I ditch that piece of plastic. Still, I have to find a way to make peace with the frustration and disappointment that rises up in me when I think of what Lance Armstrong did to so many people, including his teammates, investigative journalists, young athletes, and cancer patients. I have to find a way to fully separate Lance Armstrong from two words that mean so much to me. I wasn't sure I could do it until I wrote this post and more importantly, until Ella found her way into it. Because Ella doesn't know a thing about Lance Armstrong and perhaps never will. Yet those two words gave her the courage to recall and explain some of the worst experiences of her life with strength and clarity that I had never before seen in her. And so I stumble upon some clarity that I never expected to find by drafting a short post about a documentary I just watched. That clarity is born from that fact that although Ella's body is scarred, distorted, and wracked by constant pain due to the hell she has endured, she has lived and will continue to live stronger than Lance Armstrong ever has, or likely ever will.