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.