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. 

Monday, March 9, 2015

35

3-10-1980. I've repeated it countless times to identify myself to a doctor or a nurse as they checked the band on my wrist. I'll repeat it in a few weeks when I go in to Dana-Farber for my six-month check-up with Dr. Bunnell, and I'll write it on anything I sign tomorrow because tomorrow is March 10th. My 35th birthday.

At the risk of sounding overly dramatic, I must admit that over the last few weeks, I have welled up with tears every time I've even so much as had a fleeting thought about my birthday. I didn't know why I was so overwhelmed with emotion at the thought of it, probably because I never stopped to actually figure it out. Until today. 

Basking in the balmy 38-degree air en route to the train station after work, I realized something about why my birthday once again has caused me so much mixed emotion: 

In the five weeks after my diagnosis and before the surgery that would reveal if and how far my cancer had spread, I thought a lot about the years I had (or didn't have) ahead of me. I thought about turning 33. I assumed that would happen, even though I knew that triple positive breast cancer is very aggressive. I thought about 34, and to be honest, I figured I would reach that milestone too. Even if it's spread all over, I reasoned, intensive treatment could give me a year-and-a-half more

Then there was 35. Thirty-five was the big one -- the one that I really wondered if I could reach. I had no scientific understanding behind any of it but 35 was the first birthday that I really felt I needed to hope for. So I hoped for it. And now it's here -- March 10, 2015. It feels like a massive accomplishment at the same time that it feels like something that barely deserves a blog post. It feels glorious and terrifying, and fun and torturous, all at once. 

My book, Hope Is a Good Breakfast, opens Part Seven (which is titled, "Birthdays") with the following quote from the one-and-only Bruce Springsteen: 

"The older you get, the more it means."

I whole-heartedly agree with the Boss on this point (and so many others), but let me be clear -- that one additional year from 34 to 35 may just be another 365 days, but to me, it feels like a lifetime more of meaning.

Good night. 

Sunday, March 1, 2015

Ponky

Coming from Boston, if you look left just before you turn onto the main road leading into our suburb, you'll see a staple of the community -- an ice rink known to most of us as "Ponky" (short for Ponkapoag). Like so many families in Canton, Ponky was a second home to us. Brian coached his high school hockey team there and often Teddy and Annabel sat in the scorer's box during practice while I was still at work. Just a few weeks ago, Teddy and his best buddy Liam had a joint 7th birthday party at the rink and we filled the ice with over 60 kids (including the Canton team and Teddy and Liam's youth team). After the younger bulldogs skated with their idols, we all headed upstairs to the room that overlooked the ice for pizza and cake.

While everyone else probably had their most sentimental moments at Ponky down by the ice, being the nerd that I am, my sentimental space was that upstairs room. When Teddy and Annabel were babies and it was a particularly cold night, I watched Brian's games from that warm room. (I remember feeding them bottles that fell out of their mouths when Canton scored and I got excited.) These past few months, during Annabel's learn-to-skate hour every Saturday morning, I would work on my book up in that room and I completed significant amounts of editing in between my waves to Annabel who was shuffling along on the ice below. Even during Brian's games this season, I would sit up there surrounded by a bunch of kids and their Gatorades, AirHeads, and boxes of popcorn. I would type away on my laptop stopping sporadically to watch the game, try to quiet down the kids who ran laps around the space, and high-five the little lunatics when our team scored. I loved that room. I'll miss it. 

*   *   *

Around 7:15 yesterday morning, the roof at Ponky gave way to the mounds of heavy snow that sat atop it. Brian and I heard about the roof collapse not long after it happened and once we saw photos, we started to process it. 

Photos from Canton Fire Department



Our most fundamental reaction was like most others' in town -- we felt (and feel) so grateful. Despite that youth teams were on the ice at the time, they were not standing at the end of the rink where the roof first fell. Thanks to the heroics of the coaches, everyone escaped uninjured. Anyone who knows Ponky and how much time hundreds of kids spend there knows that it's truly a miracle. 

Given a fundraiser Brian and I had attended the night prior (for Canton Youth Hockey nonethless), Teddy and Annabel had slept over with their grandparents in South Boston. When Teddy overheard the news about the rink that morning, he couldn't contain himself. He was hysterical over the phone to us and Brian and I didn't even change out of our pajamas before we hopped in the car to pick them up. 

By the time we got to Southie, Teddy was fine, but on the ride home he started to think about the rink again. He asked us questions and we answered them, clearly not in a way that comforted him considering that this was the scene from the backseat: 

The poor little guy in all his Canton hockey gear, and Annabel copying him.
For the first minute or so of Teddy's hysterical tears, my heart kind of broke. Then once Annabel chimed in and all hell had clearly broken lose, all I could do was laugh and snap a photo. It was so crazy that it was funny.

Still, while Teddy cried and we tried to talk to him, I learned a lot about my little guy. This was my favorite (although perhaps the saddest) part of the conversation: 

Me: "Teddy, think of it this way -- now you might get a brand new rink to skate in one day! How great would that be?!?"

Teddy: "I don't want a new wink! (Sobbing tears...) I want the owd wink va way vat it waaaas!"

Me: "Oh buddy, I know. It's hard." 

Teddy: "I want vem to reep-aow the owd wink! I don't want a new wink!" (More sobbing tears...)

Me: "Okay buddy. It's gonna be okay." 

*   *   *

Today we really didn't talk about the rink. Teddy started crying again when he overheard Brian and I talking about the fact that all of Brian's equipment (even including his whistle) is gone in the rubble, but his tears didn't last too long. Teddy's biggest concern today was about where his "twy-outs" will be for next year's youth hockey teams. Apparently those were set to take place in a few weeks. 

Meanwhile, I've thought a bit about Ponky and the reports that it's a total loss. I've tried to push out the thought that has undoubtedly crept into every Canton parent's head -- what if it had happened just a few hours later? Over a hundred five- and six-year-olds would have been on that ice. Brian's team would have been watching film in the room that was blown through by the impact of the collapse. I try to stop myself because nothing good comes from that line of thinking. And then I realize how much I've learned in the last few years -- how many examples I've seen of life changing in an instant. Of tragic things happening to good people. Of the collapse of what we always just assumed would be standing forever. 

I am one of many who has faced their own sort of collapse, and I'd guess others in that club would agree with some of what I have to say. Because once you've had your world collapse, you know how vulnerable you are -- how vulnerable we all are. You know, not just in your mind, but deep in your gut, that yesterday morning could have been one of the worst tragedies this town has ever seen. 

Here's the crazy thing, though. Once you know about that vulnerability, you likely know about something else too. You know that often, things that once felt completely broken can be repaired. You know that body parts can be reconstructed and tumors can be removed. You know that metastatic cancers can shrink down to specks and that sometimes, hope alone can keep you standing. You know about resilience. 

Yesterday after Ponky collapsed into a mound of snow, rafters, insulation, and banners of championship teams, I was proud of so many people for so many reasons. Tonight I'll end with a thank you to just two of those people, and that's Teddy and Annabel. Because I love my seven-year-old for wanting to repair something that was broken. I love him for not giving up on the wink he woves. And I love my four-year-old little tomboy, who still can barely skate, but who has the heart and wits enough to repeat all day long that "no one was in-juwed at va wink." I love that she knew that was the most important piece of information. And I wanted to hug her and never let go every time she reminded me of it.

Photo by Riley Brown, January 2015

Sunday, February 22, 2015

For Wil

I knew I wanted to go to Bowdoin College the moment I stepped on the campus. It was instinct mostly, but it was a logical decision too. I wanted a small liberal arts school that was close-to-home-but-not-too-close. I wanted a peaceful non-urban setting and an excellent academic program. Bowdoin seemed to be the perfect fit.

Over four years later, I was blessed to graduate from Bowdoin on a gorgeous May morning. It was a special day for so many reasons, including that I had the great honor of delivering a commencement address to the Class of 2002. The 25-pound laptop on which I wrote that speech is long gone but Google lead me to the speech today. It's linked here if you're curious what I thought about life as a 22-year-old.

Since I graduated from Bowdoin, I have only grown closer to the place. In October 2004, Brian proposed to me on the campus quad, and we found out I was pregnant with Teddy the morning before we drove up to our 5-year reunion. Five years and two kids later, we enjoyed a rainy 10-year reunion together with friends (two months after that, I would learn about my cancer). My therapy lady at Dana-Farber also happens to be a Bowdoin grad, and while I asked her to write the Foreward of my book for many more intellectual reasons, I can't deny that I love our common Bowdoin heritage.

There's no doubt I love Bowdoin College and feel immediately bonded to others who went or go there. I know I'm not alone in that sentiment, which is why I know I'm not alone in my sadness at this weekend's tragic loss of a Bowdoin legend, Wil Smith.

I never knew Wil more than to say hello in passing but I have admired him from a distance ever since I met him my freshman year. If you read this article you will know why I (and everyone else who knew Wil) admired him so. There is no doubt -- Wil was a truly remarkable human being.

Wil's passing is so surreal to me. I can't comprehend that a man so full of life could be gone. I can't fathom that someone so strong and so good would be taken from those to whom he gave so much. I can't accept that Olivia will be without her father.

Above all, I feel a sort of anxious anger at the news of Wil's death. I'm anxiously angry that we didn't have the answers Wil needed; that we've been too slow and that cancer has been too fast. I'm anxiously angry that Wil did everything he could to take care of his daughter and still she had to say goodbye. And in a strange way, part of me feels responsible.

I know it's crazy that even a small part of me feels responsible for someone else's passing. I know it's not my fault that Wil or anyone else died from cancer. But for some reason that I can't explain, I feel like I am supposed to help and when someone dies it means that I didn't do my job in time. Of course I'm not a scientist or a doctor so I can't help in those ways. I know that I won't ever find the cure to cancer. But I want to lay every single brick possible along my way so that those who can find the cure actually do. 

*   *   *

In April 2013, on the weekend that Boston went into lockdown, my family and I drove up to Bowdoin so I could speak at the American Cancer Society's Relay for Life event. Sometime after that, a Bowdoin student named Selena emailed me. Selena told me that after hearing me speak, she decided she wanted to dedicate her career to breast cancer research. Obviously I was touched beyond words.

Since then, Selena and I have kept in touch. In fact, we emailed and spoke just this past week. In one of her emails, Selena told me about her last summer internship at a big biotech company. Selena explained:

I worked in the section of the company that does genetic sequencing and I spoke with a lot of people about the newer technology they have coming out and how that will impact the world of cancer research. ... It's unbelievable what will be possible in the next few years. Huge pharmaceutical companies are teaming up with biotech companies to work on genetic analysis and how that can translate to better drugs, treatment, etc. It's incredible.

It is incredible and I don't think Selena could ever understand what that email meant to me -- how much hope it gave me this last week.

Then Wil died and an anxious anger surfaced inside me. I approached my computer tonight to try to dissect that awful feeling. In sitting here, I figured out some of it and it has to do with the commencement speech I wrote in 2002, or better yet, with the cathedral story that I describe at the beginning.

A woman is walking down the street when she comes across three men who are laying brick. 

The woman asks the first man, "What are you doing?" and he replies, "I am laying brick." 

She asks the second man, "What are you doing?" He replies, "I'm building a wall." 

Finally, the woman asks the third man, "What are you doing?" 

"I'm building a cathedral," he answers.

In the end, I know that we must lay brick to build a cathedral. I know that Selena won't cure cancer by herself and I know that even if I won the lottery and gave The Jimmy Fund every penny of my fortune, we still won't necessarialy get there. I know that cancer is complicated and that we can't save everyone. But nevertheless, tonight I want to scream from my ice-dammed rooftop how much I wish we had all the answers and could save everyone; how much I wish that we could have saved Wil.

I know it takes a long time to build a cathedral but that doesn't make the waiting and the building through blizzards any easier. Because when the world loses someone like Wil Smith, I feel like I'm standing outside in the freezing cold amid piles of cracked bricks that the rest of us didn't get assembled in time.

*   *   *

Rest in peace, Wil. In 46 short years you built an awe-inspiring cathedral and because of you, countless men and women are better equipped to build theirs too.