TP53

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. 

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. 

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. 

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.