Thursday, July 31, 2014

A Hangout

When I was diagnosed with cancer one year and 51 weeks ago, I had no interest in speaking with anyone in a similar situation. In fact, not only was I disinterested in the idea, but I was completely repulsed by it. I knew there were support groups at Dana-Farber and elsewhere for young adults with cancer but I wouldn't have gone to one for a million dollars. Even months later, when I learned that those support groups had helped men and women whose opinion I valued dearly, I maybe would have entertained the idea for a million dollars, but I probably still wouldn't have attended a meeting. I didn't want to hear anyone’s cancer story; not on the internet or in a book or in a conference room with trays of cookies. What if my cancer was more deadly than the woman's sitting next to me? What if a story was too sad for me to handle? Or, worst of all, what if a story ended badly? I couldn't deal with any of it. So I stayed away.

There were, however, certain stories that I did want to hear, or better yet, that I needed to hear to power my hope muscles. I craved stories of cures. Perflect plots. Happy endings.

That seems like such a long time ago. 

*   *   *

Yesterday during an extended lunch break, I participated in my first “Google Hangout.” It was an event sponsored by Dana-Farber’s Young Adult Program and lead by my therapy lady, Dr. Karen Fasciano. There were six young adult cancer survivors including myself and the other individuals whose Twitter handles and blogs are beautifully laid out in Bret Hoekema's most recent blog linked HERE.

I hadn’t thought much about the event leading up to it, but I haven’t stopped thinking about it ever since.

You know that Maya Angelou quote that I’ve included here at least twice before? The one about how people will forget what you did and what you said but they will never forget how you made them feel? That’s a great quote for yesterday.

Although I tried to take a few notes to write down all of the brilliant insight this group of young adults provided, I eventually gave up. Because I found myself nodding and agreeing with almost every single point that was shared. I found myself in awe of these men and women’s eloquence, honesty, and strength. Of the passion they so clearly have for life.

Throughout the program, I had this feeling inside me that is difficult to describe. I’d label it, “connection,” if I had to pick a word. It was an awkward thing because, at least in this case, it was a mix of joy, relief, anxiety, sadness, fear, purpose, and hope. And I don’t include any of those words without powerful examples in my mind to back up each of them.

Yesterday’s program taught me several things, including how differently I feel around other young adult cancer patients now as compared to the several months after my diagnosis. I am no longer repulsed by their stories, but rather, drawn to these individuals like long lost friends. I thought about that more after we all hung up. Why did I feel so connected to these people?

Now, I know partly why. Because they get it. What’s “it?” you may ask. To be honest, I don’t really know. Maybe "it" is about expecting life then, all of the sudden and for no explainable reason, facing death. Maybe "it" involves reluctant acceptance, or paralyzing desperation, or heart-throbbing hope. Or maybe "it" is about the realization that if we are open only to the perfect story, then we will miss lots of real-life stories that are better, way better, despite when the ending may come.

Hanging out, if only virtually, with young adults who get it was a true gift. And even if I don't get what "it" is, that's okay. Because I bet they do.

Saturday, July 26, 2014

The Third Law of Motion

This time last year, August 8th loomed in the distance like a big scary monster. That first anniversary of my diagnosis felt huge; like make-me-choke-up-the-second-I-thought-about-it huge.

This upcoming August 8th is, in most ways, so much smaller. I’m sure that if I thought about it, I could make it into something much bigger—the abominable snowman, perhaps—but it would be just that—imagined. At my core, I don’t have overwhelming apprehension (or pride) for the anniversary like I did last year.

The truth is, however, that my fear and apprehension has been diverted to a different place this year. This year, it’s wrapped up in my thoughts for the women I know battling metastatic disease. It’s wrapped up in my anger and angst that such good and young people like Kristin, Meghan, "Monica," Marisa (who you may not know yet), and countless others have to endure what they have to endure. It’s not about a date anymore. It’s about that “M” word.

Isaac Newton’s third law of motion tells us that every action has an equal but opposite reaction. Life as a cancer survivor may prove that principle as well as any science experiment ever could, for me at least. For example, I could take last weekend.

Brian, the kids, and I had been looking forward to last weekend for months. My future sister-in-law’s family was hosting an engagement party for their "little girl" and her fiancé (my brother). It would be held at a house on the beach that Lauren’s step-father essentially built with his bare hands. We were all so excited that we bought new outfits (Teddy, a shirt with a collar and Annabel, a dress to substitute for her Batman t-shirt). Our kids absolutely adore Sean and Lauren so needless to say, this was going to be an event.

Lauren's family (and Lauren, of course) are amazing; just the kind of family I would wish for my brother to marry into. Her family focuses on all the right things—they work hard but they have a vibrant life outside of their jobs; they smile a lot, laugh a lot, and don’t take each other too seriously. Most of all, they love each other with a tangible sort of love, and they live their lives untainted by ugly things like greed, image, or jealousy. It’s an awesome thing, and I was so excited to celebrate the engagement of two people that I love so much.

The party was everything we had anticipated and more. We took our shoes off on the lawn and in the sand, we drank cold soda and sangria, danced and sang, ate lots of pasta and chocolate, and enjoyed each other’s company in the most sincere and relaxed sort of way. It was precious, the kind of precious that you want to bottle up and carry around with you forever.

An extra sweet part of the day for me was that I didn’t think about cancer almost at all. It was such a welcome and unexpected respite. I just took photos, lots of photos, and soaked up the summer night.

That was the “action.” The truly beautiful action.

The next day, came the reaction.

Granted, before cancer, I would have had the blues after a night as special as Lauren and Sean's engagement party. But cancer changed those blues into something different. It's not so much a sadness anymore as it is a desperate ache for more. More gatherings of the people I love. More singing 4 Non Blondes on the porch. More time.

I know myself enough to know what I can do to make tough times easier, so after the party, I put my sneakers and some exercise clothes by the door of our hotel room. I planned to get up before anyone else woke and go for a run. Running tempers my anxiety and heartache like few other things can and I knew it was a good idea to start the day off with some endorphins flowing.

But plans are just plans. I woke up at 8am (very late in the world of parents with young kids) and by that time, I had missed my running window. So I lay in bed next to Annabel who looked as beautiful as ever. And I felt love so deep that it hurt.

After enjoying a breakfast buffet that was big enough to feed a small army, we headed home. For the first part of the ride up I-95, all was good. Teddy, Brian, and I continued our game of word association and Teddy recited the string of about 70 words that we had put together the day before. We were quite impressed. World, countries, United States, Boston… No doubt, the kid has a good memory, and we laughed at every fourth word that was somehow associated with bums or boogers (Annabel loves her potty talk and we were in the mood to laugh about it so we did).

We stopped to do some shopping and when we got back into the car, for some reason, the reaction hit. I felt tired and my back felt sore. I thought I felt cancer in my neck. It was a serious Red Alert. I tried to fight the fear and I did, externally at least. No one would have suspected a thing until I did something I rarely ever do—I fell asleep. I basically worked myself into such a mental frenzy that I resorted to my meditation techniques to calm myself down. All I do is pay attention to my breath going in and out of my body and low and behold, I dozed off doing that.

When we got home, I woke up feeling frazzled. I hate the feeling of waking up from a nap, which is part of why I never do it. Our house was a mess, Teddy and Brian were leaving for a trip the next day, and I was feeling lost.

A bike ride with Annabel helped, as did a run with Brian after I tricked my parents into watching the kids. I cried behind my sunglasses for most of our run, but it felt good to get it out; to tell Brian how shaken and upset I was about Meghan’s news, how hard it was for me to hear that someone I was so sure had been cured, had not. I don’t remember much else that I sobbed on that loop, but I remember one thing so vividly because it was as if I discovered something as the words exited my mouth. Now that I’m not running or crying, I think I may be able to explain it a bit better than I wailed to Brian last Sunday night.

If there is one way that cancer has changed me most, I know what it would be. I don’t take anything for granted. I know, that sounds so cliché, but I would bet that most people who have faced a terminal illness know what I’m talking about, and that it's on a level that is indescribably more deep than a cliché. I really don’t take anything for granted anymore. Sure, I know the sun will rise tomorrow, but I know now that it doesn't necessarily rise for any one person.

Which is why, I think, the reactions are so strong after something like my brother’s engagement party. Because I want to be at Sean and Lauren’s wedding so much that I can taste the tears that start to form when I think about it.

This is one of those blogs that I may or may not publish, and if I do, I will worry that I upset someone. But everything I’ve said is the truth and in the end, I still believe that the truth does more good than harm. And the truth is that the most painfully precious consequence to having a truly wonderful life is that I so desperately want to keep living it.

Me and my brother.
Teddy kind of enjoyed the bruschetta...

So much for the new white shirt!

After I took photos of Sean and Lauren, Sean snapped this one of all of us.

Friday, July 18, 2014

A Sad Welcome

Has anyone been brave enough to follow the news lately? To be honest, I haven't, although it's obviously impossible to avoid hearing about the awful shit that is happening out there. When I was a teacher, I followed the news like it was my job, probably because I felt like it was. I taught World History and one of our longest units was the Israeli-Palestinian confict. I knew my history of that region like the back of my twenty-something hand. I'm rusty on it now, but if there's one thing I do remember is that the issues are centuries old, engrained in people at a celluar level, and complicated beyond belief. 

I'm not proud to admit that these days, my knowledge of world news comes largely from social media, John Oliver, or I know, it's very provincial of me. But for a second, I want to explain. 

In the last few days, I have seen several Facebook posts and Twitter tweets, and even heard comments on the street and on the train along the lines of "the world being on the brink of disaster." When I hear comments like this, an ugly voice inside me says something, well, really ugly. And it always says the same thing. 

"Welcome to my world." 

I am aware of how selfish and stupid it may sound for me to compare my life to the lives of people in war-torn parts of the world. In most ways, the comparison is completely ridiculous. Nevertheless, I feel compelled to write about my ugly voice because sometimes even ugly voices need to be heard. 

I recently learned via a Facebook post by a woman I very much admire that in Israel, people subscribe to a "Red Alert" app on their phone. The app warns them of where bombs are being sent so that they have time to take shelter. Apparently the Red Alert is so active that if you have it on and try to sleep at night, you'll be up every hour. It's tragic beyond words and I cannot begin to imagine how scary that is for people there. 

Or maybe, just maybe, a little tiny part of me can. 

Because often, when I feel a pain, any pain, it's like my own little Red Alert. Is this it? I wonder. Is this the pain that will kill me? And then, my craziness overpowers my anxiety medication and for a minute or two, my world falls into disaster. I start to think about how I would tell people, what I would do, what I would write, and how I'd ever pull myself together. In those few minutes, my whole world teeters on the brink of destruction; my own tiny (and huge), insignificant (yet so very significant) world comes under attack. And I desperately try to find shelter.

So next time that I hear someone say that they feel like the world is about to fall apart, I'm going to try to silence my ugly voice's "Welcome to my world." Instead, I'll try to get my kinder voice to speak up. But what should she say? Wait, I know. 

Maybe she'll say something like, "Welcome to our world." How very sad. 

Thursday, July 17, 2014

Ringing the Bell

A few months ago, my frend, Mike, forwarded me a commencement address delivered by Naval Admiral William H. McRaven at the University of Texas at Austin. Admiral McRaven served our nation as a Navy SEAL, and in some brilliant ways, he weaved together ten things he learned in Navy SEAL training with advice to the graduating class of his alma mater.

For example, here is the last one, which particularly fascinates me:

Finally, in SEAL training there is a bell. A brass bell that hangs in the center of the compound for all the students to see.

All you have to do to quit—is ring the bell. Ring the bell and you no longer have to wake up at 5 o’clock. Ring the bell and you no longer have to do the freezing cold swims.

Ring the bell and you no longer have to do the runs, the obstacle course, the PT—and you no longer have to endure the hardships of training.

Just ring the bell.

If you want to change the world don’t ever, ever ring the bell.

Mike, himself a graduate of the Naval Academy (and MIT's business school, and an Iraq War veteran, sheesh, I know) kindly remarked in his email to me that in my battle with cancer, I never “rang the bell.” Since then, I sporadically worked on a blog about Adm. McRaven's point. But for some reason, I couldn’t finish the piece. Until today.

This morning I came upon a totally unrelated speech, ESPN sportscaster Stuart Scott's acceptance speech for the Jimmy V Award at the ESPYs last night. Some of the words I found there became the missing puzzle piece to the unfinished blog:

When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live. So live. Live. Fight like hell. And when you get too tired to fight then lay down and rest and let someone else fight for you.

This was the piece I needed to finish the blog about ringing the bell. So, on the way to work this morning, I finally finished one of my many elusive blogs.

As my train pulled into South Station, I closed my laptop and vowed to proofread and publish the blog on my way home. I picked up my bag feeling empowered and purposeful. And grateful that writing still makes me feel that way.

As I stepped off the train full of spirit, I heard the ding of a new text.

I read it, and almost collapsed. It was from my friend, Meghan, a young mother of three, a breast cancer survivor, and a truly beautiful person inside and out. Teddy and her eldest son went to day care together when they were babies and although we didn't know each other then, I heard Meghan's name many times after my diagnosis; at least 15 people told me that I "had to meet Meghan M-." We didn't meet until months later, at a We Beat Cancer event. I'll never forget Meghan greeting me that night with her bright smile, and a gift. The gift was a bracelet engraved with "Hero," and I cried at her kindness when I opened it. Still to this day, I wear that bracelet all the time.

I'm sure you can guess what came next. In the most delicate of ways, Meghan told me the awful truth that her cancer had returned. I read the dreaded "M" word through my tears as I traveled with the current of the commuter crowd off of the train platform. Metastatic. Lymph nodes. Bones. I couldn't breathe, couldn't stop ugly-crying, and didn't even think about who could see me or what they thought.

When the crowd broke up, I walked into South Station unsure of what to do. An empty metal table appeared before me and I collapsed at it, bent over, and bawled my eyes out. It felt like Valentine's Day all over again; the same indescribably awful feeling of knowing that someone so good was going through something so bad. The same helpless feeling of knowing that there is really nothing I can do to help. And the same terrified feeling that I could be next. To be honest, I can't say that the emotions came in that order, although I'd like to think that they did. Eventually, they all just swirled around together and revealed themselves as mascara-tainted tears all over my work dress.  

When I caught my breath, I called Brian. It was camp drop-off time so I didn't reach him. I called my mom at work and as usual, her compassion gave me the strength I needed to (eventually) stop crying and continue on my walk to my office.

Brian called me back a few minutes later and when I told him the news, I completely lost the fragile composure I had gathered in the train station. Brian said he would come pick me up but I refused. I knew that no matter where I was today, the reality would still be there. The sadness, the helplessness, the fear. The fucking cancer. 

So what about the blog that I finished this morning before I knew about Meghan? Some of it's here, but most of it changed. Nevertheless, in the end, both Adm. McRaven's message and Stuart Scott's message still felt very fitting for shaping my feelings tonight.

*   *   *

Immediately upon reading Mike’s email back in May, I had an instinctive reaction, and one that I'm guessing Kristin and Meghan and anyone else who has ever fought cancer would understand—if there was a bell that I could have rung after my diagnosis to make cancer go away, trust me, I would have rung it. I would have rung it so long and so hard that someone would have had to call the cops to pry me away from it. But there's more to it than that, as Mike most certainly understood.

In the end, I don't completely agree with Admiral McRaven’s point that one should never ring the bell, at least not in all aspects of life. Sometimes I actually think it’s good to ring the bell, and maybe even ring the shit out of it. The hardest part, I think, is trying to distinguish the times when we should ring the bell and the times we should stay clear away from it, no matter what magnetic forces we feel are trying to pull us in.

This issue is particularly interesting when we consider our younger generations' inclination to speed. Constant communication. Immediate responses. Instant gratification. While some may portray that as a bad thing, I don’t necessarily think that it has to be. But I think that it most certainly will be if we’re not all careful. Very careful. Because the thing about speed and constant and immediate and instant is that some of the best things in life simply cannot be attained that way. I think that some of the best things in life—discovery, loyalty, love, trust, generosity, pride, and hope—can only be given and received with great patience. Dedication. Time. And failure. Lots of failure. I wonder if we teach our kids, or each other, enough about those things.

Lately, I’ve been talking to Teddy about failure. I don’t know exactly why, but several times recently, I’ve found myself doing it. It’s  mostly been in the context of the book that I am trying (and failing) to get published. In fact, just this morning, Teddy woke up and the first thing he asked me was, “Does anyone want your book yet?” Granted, the Red Sox didn’t play last night and typically his first question is whether they won or lost, but still, I was touched.

“Nope, not yet, buddy, but I’m still trying," I replied. I didn’t feel an ounce of disappointment in the “nope, not yet” part, but I felt a whole lot of pride in the “but I’m still trying” part. Then I decided to take a later train so we could watch baseball highlights together (repeats). We didn’t talk anymore about failure this morning, but tonight I’m thinking back to longer conversations he and I had on the topic. For instance, I’ve told him that maybe no one will ever want to publish my book. He was sad, but I didn’t feel the need to fight that completely. Within reason, I think that kids should be allowed time to feel sad and disappointed and they should learn how to talk about it. Only then can they learn how to deal with it productively. Still, my book isn't something Teddy needs to be sad about because, as I explained to him, I could publish the book myself even if no one else wanted to publish it. He seemed to like that idea, although he likes the idea of buying it in a bookstore more. (I do, too.)  Still, I want Teddy to see that sometimes, we fail in other people’s eyes but not in our own. In a six-year-old kind of way, I think he's starting to pick that up.

So, let me be clear. I don’t plan to ring the bell when it comes to publishing my book, particularly after Meghan told me that my writing has helped her. But publishing it will take time. And time is not something I take for granted. Especially not tonight.

Which brings me to my last point. 

Meghan reached out to me this morning to tell me about her recurrance and to ask if she and Kristin could connect. Tonight, I find myself humbled by the strength that it must have taken Meghan to do that; the strength to say, I'm going to fight this, and I'm going to need help. I want to teach my kids what Meghan, by her very actions, is teaching hers (and me). That it will be a long and lonely life if we try to fight alone; that life is so much better if we live for the right reasons and in the right manner, and if, when necessary, we fight like hell and live some more. I want my kids to be stubborn and strong, but I also want them to know that it's okay to lie down when we've fought and we're tired. That doesn't mean we have rung the bell or quit or failed. It means that we have the strength and courage to let someone else fight for us. 

Ultimately, I want my kids to meet people in their lives as good and smart and strong as the people in my life (both my every-day life and my every-now-and-then life). People like Mike and Meghan and my mom. I want my kids to have the courage to do what Stuart Scott says to do and what Meghan did today. To live strong and fight gracefully. And to see that when you fight for others when they're tired, others will fight like hell for you when you are. 

*  *  *

Note: Meghan gave me permission to share her story. Tonight she told me that if there's any way she or her story can help others, then she "is an open book." I believe deeply in the power of an open book. I think the world is a better place when we all know more about people like Meghan. 

Good Words: Fighting and Resting

"When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live. So live. Live. Fight like hell. And when you get too tired to fight then lay down and rest and let someone else fight for you." 
-- Stuart Scott

Watch Stuart Scott's inspiring Jimmy V Award acceptance speech HERE.

Monday, July 7, 2014

Our First Meeting

Annabel fell asleep in the car on the way to our very first meeting at the adoption agency. She almost always wakes up happy even if she’s still exhausted so although we felt badly waking her up, we weren’t worried about her being crazy as a result. As I pulled open the door to the building, Annabel asked in her tiny, tired voice if we would “bring the baby home with us today.”

“No, baby girl. It will take a long time to get a baby and maybe we won’t even get one, but it will all be okay.” I believe that so sincerely.

We brought the kids to the first meeting not as any statement of family unity, but rather, because we like having them with us. Plus, there was really no harm in bringing them along. Teddy loves feeling included, particularly in things he knows are important, and I wanted this to all seem as natural to him as possible.

A few weeks ago, when Brian had the kids in the car without me, Teddy asked Brian out of nowhere, “Daddy, why can’t Mommy have any more babies?” I had already told him why and he never forgets a thing, but he had every right to hear it from someone else, too.

“Because she takes a medicine that makes it so that she can’t have babies,” Brian explained just like I had. Brian said he seemed satisfied. I was surprised, because when Teddy and I had the impromptu conversation a few weeks earlier, he had pushed me a bit.

“When do you finish taking the medicine?” he had asked me.

“In nine years,” I answered.

“So could you just have a baby then?”

“Maybe, but in nine years, you will be 15 years old and wouldn’t it be more fun for you to have a little brother or sister now when you’re young, too?”

“Yeah,” he answered, still thinking about it. Clearly he has picked up that adoption isn't the traditional route, but I love that he's getting comfortable with it, nonetheless.

* * *

Our meeting last week at the adoption agency was wonderfully smooth. “Sue,” the coordinator for parents hoping to adopt domestically, was lovely, and we had a hockey connection so we knew some of the same people.

We had come to decide on domestic adoption because we heard from several sources that international adoption with a cancer diagnosis is next to impossible. We hadn’t anticipated that (in fact, I had assumed just the opposite), but when it came down to it, domestic or international didn’t make much of a difference to us, so we easily shifted to the domestic path.

As the kids colored, played, and asked for water, Sue explained to us the process for domestic adoption. First, we fill out an application. We did that as the rain poured down on July 4th, and it was nothing more than basic demographics and a few bigger decisions (Would you consider adopting a child with special needs? Would you consider adopting a sibling group or twins?) The applicable fee is just about $300, and that gets us in the system.

Next, we will be matched with a social worker who will help us through the “home study.” I had a vision of a home study being just that – a study of our home to determine if we were qualified to be parents. But Sue explained that it’s not “a white glove test.” She explained that the social worker will walk around the whole house but not in order to find something wrong with it. Rather, she will see if our house is prepared for children and if for some reason it wasn’t, she would coach us as to what to do. The home study process takes several months, and five or six meetings with the social worker, some of which will include members of our extended family.

During the home study, we will also fill out massive amounts of paper work. Brian and I will each need to write an “autobiography” about ourselves so that the social worker can more easily get to know us. Then we will do everything from fingerprints to FBI clearances. Sue explained it as time consuming but not difficult. It's how the agency gets to know us so they can find the best match possible with a birth mother.

If our home study is “approved,” we enter into the phase where Sue will conduct “outreach” in order to get our family’s profile out to birth mothers in states where the agency has professional relationships. Apparently in the Southern states, birth mothers who are contemplating adoption visit attorney’s offices, while up here, birth mothers go through adoption agencies. The agency has relationships in several states all over the country so that they can try to introduce us to women who have decided to put their unborn baby up for adoption.

What I liked most about the agency is that they have birth mother liaisons who provide support to the birth mothers during and after their pregnancy. It means a lot to me that birth mothers are cared for by the agency to the extent that it’s possible. I honestly think that any woman who chooses to have a baby and put it up for adoption is strong and brave beyond words.

Sue also explained that birth mothers will get to know our family through a “profile” that we will create. Basically, this is a photo book about our family, our house, our hobbies, and what we have to offer a child. We literally make this book, run color copies off at Kinkos, and hope that a birth mother picks it up and wants to give her baby to us. It’s nuts, and incredible, all at the same time.

If Sue finds us a potential “match,” she will call and give us basic information about the mother and the unborn baby—perhaps the mother’s age, race, state of residency, and due date. Brian and I decide if it sounds like a good fit for us and if so, we agree to have our profile presented to birth mother, or if she has already seen it, then we agree to learn more. And so the “match” goes.

Of course, there was the lingering question...

My friend, “Jane,” who adopted her third child after beating breast cancer the first time (she more recently beat it again), had already told me about the cancer piece of this puzzle so I wasn’t all that worried. Still, I wanted to hear it straight from Sue. When Teddy was out of the room getting water, I asked her.  “How would my cancer affect this process?”

Sue’s answer was just as Jane had prepped me. I will need a note from my oncologist stating that I have a “normal life expectancy.” Normal life expectancy.

There sure is a whole lot of a whole lot packed into those three words.

To be continued…