Sunday, September 29, 2013

The Footprints of My Faith

I know that I haven't written much in this space lately, but I've still been writing every single day. Over the last few weeks, any spare moment I could find I spent working on the speech or the sermon or the-whatever-you-want-to-call-it that I gave at my Unitarian Universalist church this morning.

A few months ago, our Minister asked me to speak and since this month's theme was faith, I conveniently arrived at that topic at a time when I was already thinking a lot about it. I have written about faith before, but even since then, the concept had further evolved for me.

I thought I would share what I wrote and spoke about, mostly because the process of writing it was one of the most challenging, and yet the most fulfilling experiences of my life.

This week I will write about the remarkable experience I had delivering this speech. It's yet another story of how, for me, this world can feel overwhelmingly sad and overwhelmingly beautiful almost simultaneously. 

*  *  * 

Thank you so much for inviting me to speak today. I really do consider it a great honor to be standing up here and I haven’t taken lightly the responsibility to try to say something that is worth your time.

I wanted to start today with a poem with which most of you are likely familiar. It's called "Footprints" and while the original version may date back to 1880, the author of this later version is Mary Stevenson.

One night I had a dream—
I dreamed I was walking along the beach with the Lord
and across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints,
one belonged to me and the other to the Lord.

When the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
there was only one set of footprints.
I also noticed that it happened at the very lowest
and saddest times in my life.

This really bothered me and I questioned the Lord about it.
“Lord, you said that once I decided to follow you,
you would walk with me all the way,
but I have noticed that during the most troublesome times in my life
there is only one set of footprints.
“I don't understand why in times when I needed you most,
you should leave me.”

The Lord replied, “My precious, precious child,
I love you and I would never, never leave you
during your times of trial and suffering.
“When you saw only one set of footprints,
it was then that I carried you.”

I’ve been taught to always give a compliment before a criticism so here’s my compliment about this poem—I like that it addresses one of the key elements of what it means to be human; that is, it addresses how we cope with difficult times in our lives.

I am certain that each one of you here today could share a remarkable story of how you dealt with a troublesome time in your life. Despite that I will be hogging the mike with my story, I know full well that your stories are worth our time, too. Those stories are especially relevant to the theme of this month’s services because, in the end, they are often stories about faith.

* * *

So where does the story of my young faith begin? It probably begins when I was born and my mother held me for the first time. But starting there would make this story really long so let’s fast forward to the juicy part.

On August 8, 2012, just five days after I first felt a lump in my left breast, I was diagnosed with breast cancer. I cried and I shook on the ultrasound table while the radiologist took several biopsies of the tumor and of the 4-inch-in-diameter blanket of cancer on top of it. He tried to comfort me with words like “treatable” and “best care in the world.” But in my mental disarray, I only had one question for him.

“Will I see my kids grow up?” I blurted out, perhaps more than once. He said yes, but he sure didn’t sound very convincing.

In the weeks that followed, I learned that there were different kinds of breast cancer and that I happened to have an aggressive kind – one they call “triple positive” based on the fact that it is receptive to hormones and that it carries with it a protein called “HER2.” Although I didn’t fully comprehend it at the time, HER2+ breast cancers had pretty much been a death sentence until a new drug called Herceptin came onto the market in 2005.

A cancer diagnosis really isn’t fun, but waiting for the surgery to extract the cancer and determine how far it has spread is nothing short of torture. For five weeks, I waited for my double mastectomy and for pathologists to test my lymph nodes. I vividly remember moments in those weeks when I felt like my fears would suffocate me; when I struggled to do the most basic things one needs to do to survive – like eat, sleep, and breathe.

I admit – at that time of my life, I would have loved to believe in a God like the one in the Footprints poem – one that could have picked me up and carried me. Heck, I’d have even have gotten him a wagon and he could have pulled me. But like Paul Tillich, who Buffy quoted last week, I don’t believe that God “is a being that can act in time and space and affect the course of events like any other being in the universe.” I didn’t believe that God gave me cancer and I didn’t believe that He could take it away.

In the past year, I’ve come to believe that there is a big difference between religion and faith. Anyone can have a religion. But faith is something that needs to be sculpted and cared for. Religion can be taught and practiced. But faith needs to be earned, and felt, and protected.

Prior to getting cancer, I had a religion but I hadn’t yet started to really shape my faith. I think that was because I had never really felt a reason to. And because having faith takes hard work.

One of the many things I love about being a UU is that we are encouraged to analyze our faith. We are not served one story, one answer, one way of looking at something. We’re not told to sit back while someone or some being metaphorically carries us. We’re encouraged to examine different religions and different concepts of faith. We speak in terms of love and peace and truth and service and when we mention God, we’re welcome to define that construct however we wish, or, we’re welcome to reject it all together.

There’s a character that I recently saw in a movie who I think would like UU beliefs. His name is Pi Patel and the movie was Life of Pi. I highly recommend it, so I won’t give anything away except to recount one part that I loved.

When Pi was a young boy, he decided that he wanted to learn about and practice different religions. Later, as an adult, Pi had a conversation with a reporter. It went like this:

Reporter: So, you’re a Christian, and a Muslim.Adult Pi Patel: And a Hindu of course.
Reporter: And a Jew, I suppose?
Adult Pi Patel: Well, I do teach a course on Kabbalah at the university. And why not? Faith is a house with many rooms.
Reporter: But no room for doubt?
Adult Pi Patel: Oh plenty, on every floor. Doubt is useful, it keeps faith a living thing. After all, you cannot know the strength of your faith until it has been tested.

After my cancer diagnosis, I doubted a lot of things, like whether I would live to be 34 and whether my one-year-old daughter and our four-year-old son would remember me when they got older. I doubted my cells, and whether my body and my mind could survive what they were about to endure. In those dark times, without even realizing it, I had started to build my house of faith.

As many of you already know, my house of faith includes a blog. I write because it helps me work through scattered thoughts that I can’t really grasp until I sit down and play with them on my computer screen. Early on, my blog gave me something to do when I was up at three in the morning and scared out of my mind. It gave me a place to start to sculpt what I really believe in. And it became my assurance, or perhaps, my insurance, that if something happened to me, my kids and their kids could still know who I was. Writing was and continues to be my daily sanctuary.

Immediately after my diagnosis, the foundation of my faith was, in all honesty, modern medicine. I know that some people speak of science as the opposite of faith. But I don’t see it that way. If faith is trust in something that can’t be seen and has no proof, then it makes sense that I would need to have faith in science and in the people who have dedicated themselves to it. After all, I’ll never know more about cancer than my oncologist does and I can’t wake up each morning and see if I have cancer growing in my body. I can’t feel what the Herceptin is hopefully doing to save my cells from forming a new tumor; and, like any human being, I have no proof that anything I hope for in the future will actually happen, save that the sun will rise the next day.

I realize now that this past year, I built my house of faith on the belief that the best modern medicine, at the fingertips of smart, kind, and dedicated people, could save me from cancer.

But I didn’t stop there, as Pi Patel implies we shouldn’t. I started to add on rooms, because even though a solid foundation is key, most of us don’t usually want to live in the basement.

Mostly thanks to the amazing people who surrounded me throughout my life, or even just during certain parts of it, and who taught me and cared about me and who gave me books and articles and songs and countless other gifts and stories that, after my diagnosis, inspired me to think and to write, I was able to add on to, and then even decorate, my house of faith. For instance, I added on a room for music, and I wandered there when no other room could help me. I distinctly remember coping with some very difficult minutes by my simply repeating over and over the lyrics to Bruce Springsteen’s “Waitin’ on a Sunny Day.”

I also added on a room for education, because I have faith that education is the beginning of all progress in the world – whether it be medical, social, political, or economic.

Five weeks after my first surgery, I began chemotherapy. I had been pretty terrified of the chemo for a while, but by the time it rolled around, I felt surprising peace about it. My faith felt like it stood on some solid ground and after my first chemo treatment went smoothly, I felt like I was in a bit of a beating-cancer groove.

Then came Halloween, the day of my second treatment. Much to my surprise, I had an anaphylactic reaction to one of my chemotherapy drugs. It was a truly terrifying experience for me and perhaps more so, for my mother and my husband who witnessed it. I left Dana-Farber that day having received my Herceptin, but not its key chemotherapy partners. And I left having to digest the reality that I was deathly allergic to the drugs that were supposed to save me.

That was a Wednesday. The next Sunday I sat right over there and I listened to Buffy speak about courage. I cried when our chorus sang because they’re so darn good that their music makes it impossible for me to suppress my suppressed emotions. In this place that typically brings me such peace, I was scared out of my mind. The foundation of my faith felt cracked.

The weeks that followed were some of the hardest of my life. I worried that my cancer was regrouping while I waited for answers from the allergists who had been added to my oncology team. I worried that my treatment plan, one that had been carefully crafted in clinical trials that I trusted so deeply, had been altered to my devastating detriment.

In those weeks, I nervously paced and even dragged myself around the rooms of my house of faith. Again, it would have been nice to have believed in a God who could have carried me. But instead, with the help of my family and friends, I found a way to stand on my own two feet and repair the cracks in my faith. Maybe I would need a new treatment plan, but if so, I came to trust that it, too, would work.

Two weeks later, I was back on track receiving my chemotherapy through a desensitization process in the ICU at Brigham & Women’s Hospital. By the end of 2012, after a few other bumps in the road, I had finished my chemotherapy regimen. I have continued with my Herceptin infusions and I have just one Herceptin treatment left before my year of infusions is complete.

Even over a year later, however, cancer is still almost always on my mind. So I’ve continued to decorate the rooms of my house of faith with beliefs that I have formed in all sorts of different places – from within the walls of this sanctuary, to hospital rooms and infusion suites. I’ve shaped my faith over my kitchen sink as my nose bled and I’ve shaped it in the car with my mom driving to and from my treatments. I’ve shaped it while apple picking, while watching my son play baseball, and while watching my daughter take care of her dolls. And in writing this speech, I realized that if I believed that there was a God who would carry me, I would have missed discovering my own deeper faith.

Now, don’t get me wrong – I do not judge or question someone else who believes that their God can carry them through difficult times. My whole point is that every person needs to discover his or her own faith. It’s just that I wasn’t raised to believe that someone or some God would carry me. Rather, I was raised to trust and to see in practice that I would be surrounded by love and support and encouragement while I figured out how to walk on my own. That is the same message that I want to give my children.

And that’s why I love Pi Patel’s concept of faith. Because I don’t believe that I can sit in one room, no matter how sacred it is, and find all the answers that I need. I’m claustrophobic in real life and I’m claustrophobic about my faith, too. I need to be able to build onto it, knock part of it down when it’s not working, and decorate it with all sorts of unique ideas from all different places.

As I wrap this up, there is one last room of my faith that I want to tell you about. Some of you, particularly, my family, may think this room is dark, but really, it may be the brightest one of all.

OK, I admit, there’s a bit of a dark hallway leading up to this room. That dark hallway whispers to me what I have come to learn in the past few years—that life can change in the blink of an eye—by feeling a lump or driving down the highway or watching marathoners cross a finish line. I have learned that even without cancer, we are all vulnerable and our tomorrow is never guaranteed. So gradually, I have built an awesome room at the end of that dark hallway that is based on my faith in human resiliency.

In that room, that I need to visit only rarely, I have faith that I married the most wonderful man and that he could raise our kids without me if he had to. I have faith that there is someone else out there who would love him like I do, and whom he would love, if I couldn’t be here.

I have faith in the relationships that we have helped our children form with their aunts and uncles and grandparents, and with each other. I have faith that the awesome women in Annabel’s life would teach her how to be strong and independent, and that they would help her pack for college and plan her wedding if I can’t.

I have faith that my son will love baseball and hockey and do his homework even if I’m not there to watch him. I have faith that my family would still put gifts under the Christmas tree and blow out candles on birthday cakes, and even that Brian would learn to wipe the countertops and clean out the fridge if I didn't. And I have faith that even though they would be really sad, if my cancer did return, my family would eventually find peace in the fact that we were all so lucky to have had the time together that we did.

Lest I mislead you, let me be clear that I do sincerely believe in God and I’m thankful for a religion that lets me define that concept how I wish to. Last week Buffy quoted Paul Tillich again when he said, “The name of the infinite and inexhaustible depth and ground of our being is God.” Cancer stinks, but it did give me a lot of really incredible things. It helped me scratch the surface of the depth of my being, which I guess means that it introduced me to God.

I think of my God as a sort of spirit that pervades the house of my faith. That God hasn’t picked me up and carried me through my cancer journey. But that God did help me build a house of faith with lots of different rooms and lots of different kinds of footprints. Including, even in the most troublesome of times, my own.

*  *  *
PS -- Tonight at bath time, Teddy left these lovely little footprints on the bathmat thanks to the dirt that had collected in his crocs after a day spent playing hockey, apple-picking, and playing baseball (the church part didn't add to the mess, I don't think).  Still enjoying my 70% rule (and my Effexor), I have to say, those footprints couldn't have been timed any better to make me smile. 

Monday, September 23, 2013

Good Words: Music

The best music is essentially there to provide you something to face the world with. 
~ Bruce Springsteen

Wednesday, September 18, 2013


As I write this, both of my kids are upstairs hysterically crying. Annabel is screaming for her pacifier because we followed the directions of her dental hygienist, "Miss Nancy," and took it away from her. (From upstairs -- "I wannit! I wannit! I wannit!" Gasp for air ... Repeat.) Actually, today Miss Nancy suggested that Annabel "send the binkies to the Binky Fairy" so the pacifiers are sitting in an envelope in the mailbox right now. Annabel gets to choose a special gift tomorrow in exchange for her shipment to the Passie Fairy. She told us that she wants "Batman pajamas and a Superman squirty thing." I hope Brian is able to find those at Target.

To be honest, despite Miss Nancy's advice, we weren't planning this adventure to happen tonight. We figured we'd try it out in a week or two but Annabel being Annabel, she was totally psyched about mailing the passies out today, especially after she decided that the Passie Fairy knows Santa Claus. So we went with it. Unfortunately, now we're too far in to turn back.

As if Annabel's wailing isn't heart-breaking enough, Teddy is bawling, too. "I feel weally weally bad fo herw," he tells me between sobs. "I'm so sad because she's sad." I hug him and tell him what a sweet kid he is, but that doesn't help him at all.

Brian is sitting at the top of the stairs, just outside Annabel's bedroom door, intercepting her every time she tries to escape. I keep making return trips up to try to convince Teddy that Annabel is OK. On my last trip, I thought I had him in a good place when I told him that we would just give Annabel the passie if she got really upset. I figured that even though I couldn't back-pedal with Annabel, I could still pack-pedal with him. "But she's alweady weally upset," he argued. Dammit. He got me

*  *  *

Today Brian and I played in the Scott M. Herr Memorial Golf Tournament. There are very, very few things for which I would miss that tournament, and a surgery to remove my cancer happens to be one of them. So last year, Brian and I were absent for this very special event while a surgical team removed my breast tissue and reconstructed my chest. 

A day or two after my surgery, I remember Brian telling me that Scott's father and our dear friend, Joe, had mentioned our absence to the crowd that gathered for the after-golf festivities. We heard that Joe had explained why we couldn't be there, and that he had asked everyone to say a prayer for me. I already knew that Joe and his wife, Linda, were two of the nicest people I had ever met, but it's a genuinely special couple who thinks about their sons' former hockey coach's wife on the day of their youngest child's memorial golf tournament. And there's no doubt, this family is genuinely special.

*  *  *

Scott Herr wore the number five as a hockey player and as a baseball player at Canton High School, and given how much love there is for Scott and his family, it's no surprise that the number five has come to be a very powerful symbol of his legacy. Over the last few years, Joe and Linda have shared some truly unbelievable stories about how the number five has popped up in their lives (my favorite one involves the sun shining through the trees). Their stories give me the chills and as unbelievable as they are, I believe them completely. Maybe that's because, like so many people in and around Canton, I have my own stories about the number five. Tonight, I want to share just one.

A few months ago, I was having a tough Saturday. I thought I felt something foreign inside my chest and my anxiety was mounting. Teddy was outside with Brian and Annabel was napping. I wasn't in the mood to write so I decided to do the next best thing that helps my anxiety -- I decided to exercise. 

I drafted out a workout for myself on paper, since that's the best way I've found to not do too much or too little. I pressed Shuffle on my iPod and I made my way through the workout until I was lying on a folded up beach towel on my screened-in porch doing sit-ups. As I counted by tens in my head, Garth Brooks's "The Dance" came on over the speaker. Instead of clicking passed the song like I probably should have done, I did the opposite -- I listened to the lyrics closer than I ever had. And I completely lost it.

"The Dance" 
By: Garth Brooks

Looking back on the memory of
The dance we shared 'neath the stars above
For a moment all the world was right
How could I have known that you'd ever say goodbye?

And now I'm glad I didn't know
The way it all would end, the way it all would go
Our lives are better left to chance
I could have missed the pain, but I'd have had to miss the dance

Holding you, I held everything
For a moment, wasn't I a king?
But if I'd only known how the king would fall
Hey, who's to say? You know I might have changed it all

And now I'm glad I didn't know
The way it all would end, the way it all would go
Our lives are better left to chance
I could have missed the pain, but I'd have had to miss the dance

Yes my life is better left to chance
I could have missed the pain, but I'd have had to miss the dance

I know, I'm such a cheesy wimp. I mean We Bought a Zoo can send me into a crying fit but country music?!? Seriously? I hate to admit it but yes, seriously, these lyrics got me that day and I couldn't stop crying. No more sit-ups; just me, lying on my porch with tears streaming down my face, thinking of how much I hoped that my family would share Garth's sentiment if my cancer returned. Wishing more than anything that they would find a way to believe that the time we got to spend together was worth the pain of losing me. I was so terribly upset.

When the song was over, I sat up to try to collect myself. Then I saw something on the porch floor just in front of where I was sitting. I crawled forward to see what it was. It was a sticker. There were no other stickers, and still to this day I have absolutely no idea where this one came from. But, I swear to you (on Annabel's passie), it was a little gold #5. 

All I could do was smile and look up to the sky. Because I don't care what atheists or agnostics or anyone else says. I believe in the human spirit and I believe that it lives on after death. While I don't see any reason that Scott's spirit would waste any time or energy on me, I nevertheless will forever cherish the magic of that moment. 

*  *  *

My headache remains, but 80 minutes later, it's quiet upstairs. Brian just checked in on Annabel. He said she's sucking her thumb. And as for Teddy...tonight I realized something about him -- no matter how much he may look like Brian, he's an awful lot like me. 

Tuesday, September 17, 2013

Good Words: For Scott

Remember kid, there's heroes and there's legends. Heroes get remembered but legends never die.
~ "The Sand Lot" 

Thursday, September 12, 2013

Platelet Tuesday

When Susan arrived to pick me up at my house last Tuesday morning just after 9am, she peeled into my driveway on two wheels (OK, maybe three).

"I drive fast, I walk fast, and I talk fast," she declared as I climbed in.

"That's OK. My mom usually drives me in so I'm used to crazy drivers," I responded, fastening my seatbelt.

"I swear a lot too," Susan cautioned.

"I don't mind in the slightest," I assured her. And we were off.

I met Susan earlier this year when I sold her a piece of furniture through my town's yard sale page on Facebook. It was only the second time I had participated in the virtual trading game and when Susan showed up at my house, I thought to myself, This lady must think I'm nuts -- I'm bald and sick-looking and so happy to help load a bed frame into her truck. But Susan didn't act like she thought I was nuts and she didn't look at my thin layer of fluffy new hair as if it were strange.

When Susan friended me on Facebook soon after, I didn't think she was nuts either, despite that I had never anticipated becoming friends with anyone via the Canton Yard Sale Facebook page. I instinctively liked this woman, and even though she was pretty much a stranger, I felt comfortable pressing Confirm to her Friend Request.

After that, Susan started following this blog and I started seeing her status pop up on my News Feed. I could tell that we shared some important opinions, especially after she published a photo of a protestor holding a sign that said, "Even if being gay was a choice, so what? People choose to be assholes and they can get married." That one, and others like it, made me laugh.

I also quickly liked Susan because she was a loyal platelet donor at the Dana-Farber / Brigham & Women's Kraft Family Blood Donor Center. I just assumed that donating platelets was something she had always done. Then, when Susan tagged me in a post and referenced my mom's Call to Arms, I thought to myself, There's no way she's doing all this because of that!?

It turns out, however, that Susan's dedication to donating platelets was inspired by my mom's request for people to visit Dana-Farber to donate platelets in my name for our birthdays earlier this year. I couldn't believe Susan's generosity then or now.

I also couldn't think of any way to thank her. So I decided that I would join Susan for one of her donations so that I could get to know her better and write about her; my way of showing my utmost appreciation for all she was doing for cancer patients at the institution I love. This is that post.

On Tuesday, I learned a lot about platelet donations, mostly from Susan, who claimed that she didn't know anything. But Susan knew a lot, including that Tums help donors when their tongue gets tingly and that the centrifuge machine makes a different noise when it is returning blood into the donor's body as compared to when it is drawing his or her blood out. I sat next to that machine for a few hours on Tuesday as Susan and I chatted about everything from our families to our jobs to the fact that nothing embarrasses her except clapping in church. She was hysterical.

One would think that a woman with two children, a husband, and four different jobs to juggle would have little time to donate platelets, never mind, to do so every other Tuesday. Indeed, Susan has every reason to declare, like most of us do, that she doesn't have the time for it. Instead, Susan tells her boss when it's "Platelet Tuesday" and that she cannot do anything until she has donated her bag or two of platelets. Susan is not a lady you mess with, and I'm almost certain that her bosses already know that.

Susan chooses to donate at Dana-Farber because they are in constant need of platelets and because the platelets are almost immediately used right then and there. I never had to have a platelet transfusion, but when my chemotherapy caused me terrible nosebleeds and persistent bloody gums, Dr. Bunnell instructed me to come in to have my platelet count tested. My platelet count was good enough, which meant that my blood would clot properly and stop my nose and my gums from continuing to bleed. Other patients aren't so lucky and so they need a bag or two of platelets like the ones that Susan has donated since February. Without those platelets, an already complicated situation would become a heck of a lot worse.

The shortage of platelets at Dana-Farber is very real, especially considering the volume of patients undergoing chemotherapy there. Since platelets cannot be frozen and are good for only five days after donation, the shortage is particularly severe during holiday weeks and times of severe weather. Also, relatively few people take the time to donate platelets, and even fewer do so on a recurring basis. Donating blood is just easier, people think, and in many ways, they are right.

On Tuesday, I saw with my own eyes that platelet donation is time-consuming, though not drastically so. The timing varies depending on people's blood flow and ratio of platelets, which they test in the first few minutes of the donation. Susan's donation was set take 103 minutes according to the computer attached to the centrifuge machine (pictured here).

Of course, adding on a 10-15 minute screening appointment and the commute, Susan spent her whole morning at the Kraft Family Blood Donor Center. In fact, around 12:15, I had to leave to hop on the Green Line to work, and when I left, Susan was still in her chair squeezing the little red ball that they gave her to keep the blood flow in her arm up to speed. I don't want to downplay or exaggerate the time commitment, but in the end, four to five hours every other week is significant, to almost all of us, including Susan.

"I don't have money to give, but I can give this," Susan explained, "so I do." Even better, she encourages her friends and family to come with her. There's a Wall of Champions in the Kraft donor center, covered in photos of the most loyal donors. I have a feeling that Susan will be on that wall one day.

Susan is a special lady, and I love that she grew up in the neighborhood that I now live in. That just feels like good karma. Plus, she introduced me as a "cancer survivor" to all of the nurses that she knew by first name in the donor center, and I loved how confident she sounded when she said that.

I also loved that Susan protected me like a mom would. When one of the nurses remarked that I was "so young" to have breast cancer, then started talking about a TV program she saw about the increased incidence of breast cancer in young women, Susan immediately put her hand up towards the nurse and instructed her, "Stop! Don't scare her!" The nurse covered her mouth and didn't say anything more. When another nurse went to heat up a warm pack in the small microwave that was right next to me, Susan told me to move away while the microwave was on. The rational part of me doubts that a microwave could cause a recurrence of my cancer, but I can't explain the comfort I felt knowing that I wasn't the only one with another part of my brain that thinks it could.

Susan's parents raised nine children, so clearly heroism runs in the family. Her mother survived bladder cancer and breast cancer, but leukemia finally took her life several years ago. Now, Susan's father is very ill and just before I left her on Tuesday, she was texting with her family members about how they were going to coordinate with hospice to take care of him. I know that Susan had a hundred things to do that day, and as I ran out to work, Susan was still sitting in her chair as the big machine took out her blood, spun off the platelets, and returned the blood back to her. But Susan never complained, because it was Platelet Tuesday. And on Platelet Tuesday, along with swear words, broken speed limits, and an excessive amount of Tums, Susan makes the time to save lives. She gives something that no factory can produce and no medicine can replace. It's what she can do. So every other Tuesday at 10am, she does it.

If you or anyone you know may be interested in donating blood or platelets at Dana-Farber / Brigham & Women's Kraft Family Blood Donor Center, please call 617-632-3206 or email  A staff member will get back to you and you too could become a champion to cancer patients in need of your platelets. 

I took this photo on Tuesday night when I was back at Dana-Farber for a meeting. It's hanging in a hallway of the Dana building.  I don't have the words to explain what a photo like this, and the handwritten note above, means to a "cancer survivor" like Susan says that I am. I love this photo because I share Jack's sentiment of thanks for so many people, including, obviously, for Susan. 

Wednesday, September 11, 2013

Never Forget

One year ago tomorrow was my Checkmate Day; the day that my cancer was extracted from my body, the day that I was finally able to start fighting back. While I was keenly aware of my diagnosis anniversary as it approached, this one seemed to surface out of no where. That small realization -- that I will not always see this year as a reflection of last -- feels like a gigantic and unexpected victory. 

Of course, today is still a powerful anniversary, not in my cancer battle, but in our nation's history. I have never written about 9/11 but tonight, I want to. To be honest, I never expected that, either. 

*  *  *

Until this past month, I wasn't aware of the significant hype surrounding the first day of kindergarten, more so for the parents than the kids, perhaps. All that hype made me smile, but truthfully, I wasn't feeling the nostalgia, the anxiety, or the sadness that it seemed like other parents were feeling (can you say, Effexor?). Even Brian was having a tough time with the thought of Teddy going off to kindergarten, particularly, he told me, with the thought of Teddy trying to buy his lunch in a cafeteria full of kids that were bigger than him. I just laughed at this and told him that Teddy would be just fine. 

I realized how much I am like my mother when I didn't feel much emotion about my oldest's fast-approaching "first day." I had dropped Teddy off at day care since he was a few months old so it wasn't like this was the first time that he and I would spend our days apart. 

Perhaps because I hadn't built it up in my head as one of my grand visions, getting Teddy ready for kindergarten this past Monday morning was wonderfully precious. He was nervous, which was not only adorable, but it also meant that he wasn't feeling confident enough to be a pain in the a$$. That, in turn meant that he actually got dressed, ate his breakfast, and put his shoes on when I asked him to. Talk about firsts. 

When we heard the bus humming down the street, I saw Teddy jump up and down a few times. Then he climbed up the bus stairs, and was gone before I even knew what had happened. 

Immediately after the bus pulled away, Annabel was hysterical. “Teddyyyyy!!!" she screamed with elephant tears streaming down her face. "Whe-a did he go? I want him come baack!! Teddyyyy!! Come back!!!” she wailed in Brian’s arms. 

Brian quickly handed our screaming child to me so that he could rush to school. My mom had stopped by to see the action so she and I were left alone to console Annabel. My mom’s more the Oh, you're just fi-ine type, which I admit, can be very useful (see above), but sometimes I’m a bit more "granola-crunchy," as she likes to say. I've gathered that "granola-crunchy" is a term she made up, and I'm pretty sure that she uses it to mean that I explain things to my kids when she believes that "Oh, you're just fi-ine" would suffice. 

“He’ll be back later today; he just went to school,” I explained to Annabel as she continued to sob. "Did you want to be here when he gets off the bus?" I asked her. But she was too upset to answer. 

Brian was upstairs changing Annabel when Teddy’s bus pulled up to drop him off later that afternoon. When Annabel heard me yell, “Buh-us!” she leapt out of Brian’s arms before he even had a chance to hand her a clean shirt. As I walked down the driveway to meet Teddy, I turned around to see a tiny bolt of skinny whiteness and Lightning McQueen pajama pants flash by me.

“Teddy! Teddy! Ted! Ted! Ted!” she squeaked in the purest form of excitement I have ever seen. She was so happy to see him that she literally couldn’t get his full name out. 

The remaining kids on the bus looked out their windows in utter confusion, trying to figure out why this kid was half naked and why she was so excited. Their faces were priceless, as was the little scene I saw when I turned around. My two kids were standing in the driveway hugging each other.

“I love you, Ted,” Annabel declared.

Teddy let out a smile even though I think he was trying not to.

“Love you, Boo,” he replied. 

I will love that story as long as I live, and even more so on days like today when our two little cherubs bickered for most of the morning.  

*  *  *

Like many people young and old, I remember September 11, 2001 as if it were yesterday. My memories are not like a story that flows gracefully from one scene to the next. Rather, they are like short video clips set to slow motion. I remember so many of those clips, from just after 9am on 9/11 and through the days, weeks, and months afterwards. But there's only one of those clips that I want to write about tonight.

On the morning of 9/11/01, I was a senior at Bowdoin College, sitting in a class that I can't even remember. In fact, I really don't remember much about what I first heard or how I heard it. I just remember leaving class and thinking that the sky was so blue. I remember feeling like it was far too beautiful of a day for something horrible to happen. 

After that, my memories get blurry -- I got a ride back home from one of Brian's friends who knew lots of people in New York. I remember sitting there trying to think of everyone that I knew in New York and praying (yes, praying) that they were all safe. Then I remember watching the news from behind my hands. Brian was there with me by that point and I remember being so thankful that he could watch what I was not able to. And then I remember that kicked-in-the-gut feeling that my entire world was on the verge of ending. That thought came when I heard something about a plane near Washington, DC, possibly, heading for the White House.  

My slow motion video clip stops there. It freezes on the carpet that covered the stairs in me and my friends' apartment. I remember sitting on those stairs, fixated on that carpet. And I remembering thinking about my sister and realizing that if anything ever happened to her, I didn't know how I'd ever get up from there. 

On 9/11/2001, my sister was a student at The George Washington University. Having visited her several times, I knew how close to the White House she lived and worked and went to class. And so I remember that carpet through my shaking hands, and the newscasters' repeated frantic reports of a plane or even planes targeting our nation's capitol, and flashes of my sister's face. Twelve years ago today, tears streamed down my face as the thought of losing my sister terrorized me. 

This week I am reminded of one of the most precious gifts in the world -- the love for and from a brother or a sister. In the most tragic of ways, I remember that love every time I think of 9/11. I remember how relieved I was when I finally heard that Rachel was OK and, weeks later, when I finally started to trust that no other planes were going to be taken. I cannot even fathom what others have endured if they were not blessed with the news that I received. Even now, 12 years later, I cannot comprehend that thousands of brothers and sisters lost a brother or a sister that day. 

We are very blessed who have loved, and been loved by, a sibling. Even though on most days I remember that, on 9/11, I never forget it. 

Sunday, September 8, 2013

Ready, Set, Let Go

Last Wednesday as Herceptin flowed into my IV, my Mom and I looked at our calendars. We were curious how many more infusion treatments I will have at Dana-Farber. We remembered that my first chemotherapy and Herceptin infusion had taken place on October 10, 2012. So we knew that the one year course of treatment was almost complete. 

By our estimation, I have two infusions left -- the penultimate one on September 25th and the last-and-final on October 16th. There may be one more, considering the almost two-week delay I experienced after my allergic reaction, but we doubt it, and we do have zero medical degrees between the two of us. Dr. Bunnell, the one who actually knows what he's talking about, will tell us my schedule at my next appointment, although if I really wanted to know now, I could just call him. 

*  *  *

A few months ago, I had a chance to sit down for lunch with a young woman who I will call "Carrie." Carrie had been a patient at Dana-Farber 13 years ago, and while so much of my lunch with her was wonderfully memorable, there's one thing that she said that I will never forget. 

We had got to talking about how much we love Dana-Farber and how much that institution gave to us. We talked about how safe and secure we feel when we're there, which is crazy given that at first, I didn't think any place on Earth could have been scarier. 

Carrie told me that the first few times she visited Dana-Farber for scans after her treatment was complete, she wanted the scans to reveal cancer. Not a lot of cancer, and definitely something that they could fix, she explained. But if they found cancer, I could keep on being treated there, and I would be safer with them watching over me. 

I laughed with Carrie about this, not because I thought she was nuts, but because I so sincerely understood how hard it is to let go of the place and the people that saved your life. 

*  *  *

Teddy and I visited Dana-Farber together today so that we could walk the three-mile route of the Jimmy Fund Walk with other patients and their families. A DJ was blasting great music on Jimmy Fund Way and I enjoyed embarrassing Teddy with my goofy dancing (the goofy part is not necessarily purposeful). He played games along Brookline Avenue while I munched on the popcorn and ice cream that he asked me to hold. When I first walked into the Yawkey Center two Augusts ago, I never could have imagined that one year later I'd be dancing and eating ice cream in the very same place. And I certainly never imaged that my son would be smiling with me there, having successfully thrown beans bags into the holes of a wooden box. 

Today's walk was nothing short of magical. Sure, Teddy didn't want to hold my hand (after all, he is starting kindergarten tomorrow), but he was always keenly aware of where I was and he seemed so proud and satisfied when he asked me a question to which I actually knew the answer (or so he thought). For example, "Who paints the yellow lines on the street?" "Why are there people at Fenway if the Red Sox are in New York?" "Why was I born at the same hospital that you and Daddy were born at?" I had to think on my feet, literally!

Teddy doesn't just like to ask questions; he also likes to tell me a thing or two about a thing or two. So he told me about Fenway Park and about why the Green Line was sometimes above ground and sometimes below ground. He showed me the general direction of "the place where Papa bought his new caw," and he insisted that I take photos of him in front of the Citgo sign. As we walked alongside people who had literally just walked over 24 miles (we had walked one), Teddy informed me that we had walked a weally weally long way. That kid totally cracks me up. 

Speaking of cracking me up, just last week I was cleaning the living room while the kids watched, critiqued, and continued to add to the mess. As I repositioned my healing chair from the horizontal position that the kids often maneuver it into, I scolded them. "Please do not play with this chair because you are going to break it!" 

Teddy had an immediate response.

"Well, Mom, you don't have bweast cancew anymow so we don't even need your chairw." He could see that I certainly wasn't going to argue with that. But he couldn't see that my heart had basically just melted inside.

*  *  *

I know how crazy this may sound, but just like Carrie wasn't embarrassed to admit her truths, I can't be embarrassed to admit mine. 

My truth is that while every fiber in my body wants to be cured, part of me is also afraid of being without the people, the medicine, and the institution that cured me. Part of me is terrified, and maybe even oddly nostalgic, to admit that I no longer need my healing chair even though I so desperately do not want to need my healing chair ever again.  

I was strangely proud to check-in at the registration table today as a current patient of Dana-Farber. But I realize now that mixed in with that pride is a huge amount of comfort. At Dana-Farber, I know that I'm in the very best hands. So maybe it's only natural that I wouldn't want those hands to let me go. 

I recently learned that half of Dana-Farber's work is pure research. I had no idea. I also had no idea that for the past 25 years, thousands of people have walked the Jimmy Fund Walk to raise money for the institution that saved my life -- for the research and the clinical care that I hope and pray has cured my cancer. 

When I check in at the Jimmy Fund Walk next year, I will still be a patient of Dana-Farber. But, if I am lucky, I will be a much more distant patient. While that distance scares me, I realized tonight that it will still allow me to walk every September so that the Jimmy Fund and Dana-Farber can continue to save lives.

That distance will also not deprive me of my right to wear the pin that I wore as I walked today; one that boasted, "I'm Living Proof." Yes, I am, and so were the children and teenagers, young parents and elderly people that walked alongside me. Even as my patient relationship with Dana-Farber changes, I hope that I always feel pride and comfort in knowing that I'm proof of the success of cutting edge research and world class clinical care. And Teddy, who has already declared that he wants to walk again next year, will always be proof of how important all of that really is.

Getting ready to walk...

Saturday, September 7, 2013

Good Words: Life of Pi

Brian and I watched Life of Pi tonight while I folded four loads of laundry. That movie was much to think about, and unbelievable characters and imagery. I had to post my favorite dialogue:

Writer: So, you're a Christian, and a Muslim?

Adult Pi Patel: And a Hindu of course.

Writer: And a Jew, I suppose?

Adult Pi Patel: Well, I do teach a course on Kabbalah at the university. And why not? Faith is a house with many rooms.

Writer: But no room for doubt?

Adult Pi Patel: Oh plenty, on every floor. Doubt is useful, it keeps faith a living thing. After all, you cannot know the strength of your faith until it has been tested.

Tuesday, September 3, 2013

Dare Not Linger

Until a few weeks ago, I had never heard of a HeLa cell and I had only vaguely heard of Henrietta Lacks. Really, I only knew enough to know that Henrietta Lacks was an African-American woman and that there was a book about her. Clearly I had missed the fanfare of Rebecca Skloot's bestseller, The Immortal Life of Henrietta Lacks, when it was first published in 2009.

This past week, while vacationing with my family, I read that book cover to cover, sometimes in suspense, sometimes in amazement, and a few times, with sheer, selfish terror.

In those pages that are now crinkled and covered with random notes, I learned about Henrietta Lacks -- how her great-grandfather was a white plantation owner and her great-grandmother, a slave. How she died from a horrifically aggressive form of cervical cancer back in 1951, when she was only 31 years old, not long after giving birth to her fifth child. I learned about Mrs. Lacks's family and some of what they have endured in the last half century. And I learned about a very dark part of our nation's history; terrible things that black people, the mentally disabled, and other vulnerable populations were forced to sacrifice in the name of science.

This past week, between trips to play mini-golf and jump on trampolines, and between diving for things that sunk to the bottom of the pool and playing Pictionary, I also learned about the precious cells that came from Mrs. Lacks's tumor.

Henrietta Lacks's cancer cells, taken by Johns Hopkins doctors for experimentation without her permission (though legally) back in February 1951, grow in cell culture in the most remarkable of ways -- where other cells die, these multiplied, and continue to multiply, by the millions, billions, trillions. Ms. Skloot explains one estimate of their quantity -- that if we could weigh all of the HeLa cells ever grown, the scale would show 50 million metric tons. It sounds kind of miraculous to me, and it may well be, even considering the scientific explanations of why these particular cells behave this way.

Most everyone who knows about HeLa cells appears to agree -- these cells have fueled the most significant scientific discoveries of the last six decades. Despite that they are cancer cells, HeLa cells apparently behave enough like healthy cells to allow scientists to test the effects of countless variables including HIV, space travel, exposure to nuclear energy, and chemicals for medicine or food. HeLa cells are still used in thousands of laboratories around the world.

In this post, however, I won't pretend to be a scientist and I won't recount much more of the story of Henrietta Lacks, her life or her death, her family, her doctors, or the intense bioethical, philosophical, and even economic controversy surrounding the use of her cells and their genome. The book, and recent news articles (including this one), do some of that.

I also won't write about what this book has meant to me professionally, even though I asked my mom to borrow her copy only because it was relevant to work I am doing in my job as a health care attorney. I could write a whole post on my colleagues and friends who introduced me to this book and about their undeniable care and concern for my well-being as I process it, but I won't do that either.

I won't even write about my opinions on the dark history that the book uncovered for me -- issues related to race, scientific development, truth, and justice.

Today, I will take on a single perspective and I will write about what this book means to me as a cancer patient.

First, a caveat. The last thing I ever want to do is infect anyone else with thoughts from my crazy mind. I've thought a lot about whether this post could inadvertently do that. It's kind of like when you hear a buzzing sound and you ask your friend, "Do you hear that buzzing sound?"

"Well, now I do, thanks," your friend replies sarcastically. Yeah, I don't want that to happen. If you don't hear the crazy, I don't want to point it out to you, but I definitely hear it, and in case you do too, maybe knowing that we're in it together will help both of us. Anyways, that's my fair warning.

*  *  *

About one year before I knew about Henrietta Lacks's immortal cancer cells, I knew about my own hopefully mortal cancer cells. I knew that they had formed a four-inch-in-diameter blanket of doom over my left breast (that was the ductal carcinoma in situ, or "DCIS") and that they had formed an invasive tumor beneath that blanket (the invasive ductal carcinoma, or "holy shit").

I also knew that the tumor carried with it the HER2 protein which, prior to the relatively new drug, Herceptin, would almost certainly have killed me, maybe even by now, for all I know. I was keenly aware of how much Dana-Farber, my doctors, and my family and friends were doing to save my life. I even knew that the chemotherapy drug, Taxotere, was key to my recovery, despite that it and I didn't exactly get along. But I had no idea that Henrietta Lacks deserved credit for saving my life, too.

Well, she does. Because on page 139, I learned that scientists used Henrietta Lacks's cells to test and develop chemotherapy drugs, including Taxol, which is in the same family of medication as Taxotere, my reluctant Ally. On page 142, I learned that HeLa cells played a significant role in creating "the first monoclonal antibodies, special proteins later used to create cancer therapies like Herceptin." And on page 234, Ms. Skloot explained that a young cancer researcher had used HeLa cells to develop the process known as fluorescence in situ hybridization ("FISH"). On August 18, 2012, I wrote about how the FISH process helped diagnose my cancer as HER2+.

Amazingly, all of that is only related to what I know about my own cancer treatment. I haven't even recounted the role that the HeLa cells played in fighting polio and hemorrhagic fever and countless other diseases from which I have been spared.

No doubt, on the most superficial and yet the deepest level, I owe Henrietta Lacks one gigantic Thank You. I wonder if she would have wanted that. If so, I wish I could have given it to her.

This week, as I read about cancer research, cell behavior, and the tragic death of a young mother, I couldn't help but have a queasy stomach sometimes. I knew I should have skipped the part about how aggressive Mrs. Lacks's cancer was -- about how when they performed an autopsy on her, they found tumors "like pearls" everywhere. (You hear that buzzing?) I'll never forget Chapter 5's title, "Blackness Be Spreadin All Inside," based on Mrs. Lacks's explanation to her cousins of what she felt in her body. But like the drivers who cause curiosity traffic at the scene of an accident, I couldn't turn away. Maybe it was because I'd been in my own accident, so I had a sick curiosity in somebody else's. Or maybe it was because I believe that Mrs. Lacks deserves me to read about her.

Last week was my favorite week of the year because all of my immediate family lived under the same roof. None of that was ruined by my reading this book. But of course, I've felt a lot of cancer since learning about HeLa cells -- ugly pearls in my head, my chest, my neck, and under my arm. I had a few nightmares that I was experiencing some of what Mrs. Lacks had experienced; that I needed to plan for my own demise but I didn't have enough time to do it.

I know that writing this is going to make some of the kindest people I know feel guilty; like they lead me into the darkness of those horrible thoughts. But they didn't. In fact, if they feel guilty, then I'll feel guilty about their guilt and then we're all in a hole. Truthfully, if I read this book prior to my diagnosis, I'm sure I would have felt tumors and had nightmares just the same. That's how my mind has always worked. Getting cancer just gave it a particularly narrow focus of things to worry about.

The good news is that nowadays, my queasiness and my craziness always subsides. Maybe that's thanks to my firmed-up hope muscles, my more experienced inner fighter, or simply, my Effexor. Or, at least last week, I can thank my brother, who distracted me every time I got up from reading in my outdoor chair with the fear of being thrown into the pool fully clothed.

Anyways, right now, I don't feel any tumors. At least, I don't think I do...but something buzzing?

Seriously, though, The Immortal Life of Henrietta Lacks showed me once again that I've come a long way since our last August vacation, when I cried after I inadvertently glanced at the Jimmy Fund Telethon on TV. Reading a book about cancer cells was, in a way, an enormous personal victory and I am sincerely grateful for it.

But that book did something even more for me. It gave me focus. Not focus on tumors or even on cancer, but focus on the importance of research. On the need to find a cure.

To best explain this new focus, I need to make a confession. Early on after my diagnosis, I would sometimes glance at the cover of a newspaper, maybe in a stack at a convenience store or on a countertop somewhere, and I'd hold my breath, praying that by some miracle, the headline would read something like, Cancer Cure Discovered. I wouldn't be disappointed when it didn't say that, mostly because I knew I was being ridiculous and because these thoughts were all so fleeting anyways. But I often found myself coming back to the very conscious hope that one day, there would be a cure to what I had first thought of as an inevitably fatal disease, for me and for anyone else with my "bad luck."

Then I learned about my treatment regimen and about Herceptin. I came to understand that modern medicine would give me overwhelmingly good odds, the hope for a long life, and the belief, albeit sometimes an unsteady one, that I am cured.

Now, I feel lucky beyond words to have gotten a kind of cancer that had been studied for decades and for which doctors can not only do something, but can bet that that something will actually work. I often feel completely spoiled that my story (knock on wood) appears to be such a successful one.

However, with any peak comes a valley and even from my awesome summer vacation, I remembered the valley that far too many patients and their families have been dragged through. These are people like Henrietta Lacks and Mary and Ashley and the families they left behind to grieve. These are babies, children, teenagers, and adults, inflicted with a disease or a version of a disease for which we do not yet have a cure. I won't lie -- sometimes I wonder why I get to live when they don't. Then I remember that "Why" is often the most difficult question in the world. How, on the other hand, is something over which I have a bit of control.

On the morning before my double mastectomy, I wrote a blog that I later came to despise (I despised only my own writing; obviously I still cherished Nelson Mandela's words). In fact, I even started to draft a post about how dumb my thoughts from that blog really were. I wondered to myself -- How could I have been so stupid as to think there would be one clear morning when I would wake up and declare triumphantly, I am cancer free! It's just not that simple. Cancer is a stealth invader.

Still, something brought me back to that blog today. I re-read Nelson Mandela's words:

I have walked that long road to freedom. I have tried not to falter; I have made missteps along the way. But I have discovered the secret that after climbing a great hill, one only finds that there are many more hills to climb. I have taken a moment here to rest, to steal a view of the glorious vista that surrounds me, to look back on the distance I have come. But I can rest only for a moment, for with freedom come responsibilities, and I dare not linger, for my long walk is not yet ended.

As far as I know, I have been blessed with a cure to my cancer. I know that with that freedom comes responsibilities. I don't really know what those responsibilities are just yet, or what I will choose them to be. But I know two things with great clarity, the second one thanks largely to the Henrietta Lacks book. First, I know that writing can help some of us cope, and second, that research can lead us all to cures. Yes, writing saves lives, but that's still metaphoric. Research does it for real.

I don't look at newspaper headlines like I used to a year ago, although I do believe, in part because of Henrietta Lacks and her cells, that we will find a cure to all types of cancer, and to cystic fibrosis, ALS, AIDS, Alzheimer's, and other deadly diseases. I know, however, that my belief, even if shared by them, can't comfort Mary's children or Ashley's parents in their time of grief. Which is precisely why we dare not linger. We have a long walk ahead.

This post is dedicated to everyone walking in this Sunday's Boston Marathon Jimmy Fund Walk. And to Kate and Andy, who continue to help me on my walk, even though they are far too humble to believe that.