Faith

In my last blog post of 2012, I wrote about what my sister and I call "Sunday night feeling." You know, it's that terrible feeling that everything fun in life is over and never to be had again.

When I was little, every now and then, my Sunday night feeling escalated to a whole new level. Now I realize it was probably a classic case of pretty serious anxiety, but at the time, I thought it was just me. I remember the feeling of helpless fear; of being so overwhelmed that I didn't know how I'd ever make it to the next minute.

Usually it was thoughts about death that worked me up into this terrible tizzy. I was petrified that my parents were going to die and the thought of losing them suffocated me like a dark, heavy tarp being thrown over my head. I could lie still in my bed, but in my head I was thrashing around under the tarp, trying to figure out why and how and what I should do next; what I could do next. I remember thinking, What if this awful feeling never goes away? But miraculously, it always did, and the next morning, I thought that the worried girl from the night before was a bit of a lunatic.

I remember one of these terrible nights as if it were yesterday. I remember being so embarrassed to tell my parents what I was feeling, so while my Dad watched TV and my Mom read, I asked them a bunch of questions instead. I had probably done the same thing the week before and the week before that. I remember framing my questions in terms of natural disasters, another thing I feared far more than was healthy. Could we ever had a tornado here? A tidal wave? How do you know that it wouldn't wipe away our whole house? Or you? 

As a parent myself, now I see the situation so differently than I had before. Now I realize that my parents were probably just trying to decompress after a weekend full of entertaining three young kids. I'm sure they didn't want any deep questions from an anxiety-ridden third-grader. They just wanted to rest.

But my parents are amazing so they reassured me. Tornados and tidal waves don't come to Canton, Massachusetts. We will be fine. We're not going anywhere. 

I went away, wishing I was satisfied. But I wasn't, and I remember coming back sometime later. I will never forget what my mother told me.

She said something like, Even if we did die, you would be fine. Human beings are amazingly resilient and they bounce back. You would be OK. 

As a parent with a child who asks 30 questions before bed, and 50 questions on nights that we're especially exhausted, I realize that my poor mother was probably just sick of the questions and sick of her more conventional answers not getting me anywhere.

But at the time, her answer absolutely shocked me. How could she even reference death with such nonchalance? Especially the death of the two people that were the center of my entire universe? And how could she ever think that I would be OK if something happened to them? I knew I wouldn't ever be OK, and that was that. 

* * * 

When one is forced to enter the "kingdom of the sick," he or she meets new people there. I've met new and wonderful people there, or at the very least, I've heard their stories. 

For instance, I heard Bridget's story and I've followed Ashley's as if she was my own cousin. Mary, who I knew before my own cancer, became a friend on a whole new level after it, and I still can't believe that I got to be with her at Dana-Farber for her last treatment. As I think about these three tiny women with enormous spirits, I quickly realize something they all have in common. They were (or are) deeply religious. 

Talking about religion for me is about as comfortable as putting on a pair of Spanx after a Chinese food buffet. Things don't exactly slide into place. But that doesn't mean that I don't think about it (religion, not Chinese food buffets) often, because I do. Especially now that I have learned about how much it appears to have helped, and continue to help, women that I look up to as so truly remarkable.  

But let me be clear -- this post is not about religion. There's no way I'm ready to take on such a weighty topic. This post is, however, about faith. Since I learned that an aggressive form of cancer was silently invading my body, I have not come to be more religious. But I absolutely have become a person of real faith. 

My cancer journey has taught me that everyone has, or will have, times when they feel so desperate and scared and helpless that they don't believe they can carry the weight of their own mind or body from one second to the next. When that happens, the only thing to do is surrender. Some people surrender to their God and they ask their God to carry them. From what I've seen, He has. 

As I said goodbye to Mary for the last time, I couldn't stop crying. I am so embarrassed to admit it, but at that moment, Mary, unable to even sit up, comforted me. She told me that she trusted God. I could literally feel the peace that her God had brought her. Part of me was so relieved. Another small part was jealous. Still, I cried like a fool.  

Lately, as I've battled through some dark times in my own head (I still think every little pain is cancer), I've reminded myself of my own faith. It's not conventional, but it's very real. 

I have faith in people. I have faith that they have studied hard to learn about cell biology and that their advances with proteins and antibodies will save my life. I have faith in the teachers who taught them and the books that they read. I have faith that progress is being made every day. 

I have faith that the good ultimately outweighs the bad, even though sometimes we may feel like the scales are tipped in the wrong direction. I have faith in the generosity of our loved ones and of complete strangers and of the many people somewhere in between.  

I have faith in my doctors, and in the colleagues with whom they discussed my case. I have faith in the laws that they follow. I have faith in the beams that hold up the Yawkey building because I've seen the names spray painted on them and I've seen the love that went into those letters. 

I have faith in my family. I have faith in their resiliency, because I've seen their strength; I've seen them fall, and pull themselves back up again. And I've seen such unbelievable resiliency in other families -- in Bridget's family, and in Todd's -- that I believe even more deeply in what my own family is capable of. 

I have faith in the music and the literature that carried me through some of my darkest moments. I have faith in friendship -- old and new and undiscovered. 

I have faith in love. And I don't believe that it comes along only once (no matter how much Brian hates when I suggest that he would (and should) find someone else if Heaven forbid...). 

I have faith in myself -- in my own resiliency; in my body that, for so long, I felt had betrayed me. I have faith in my own mind that has trudged back from the corners of caves to find light again. 

And I have faith in miracles. I believe that things happen that we can't explain -- magic -- that may be influenced by something or someone so big (or so small?), so complex (or so simple?) that we could never begin to comprehend it. 

I have my doubts, and those times are hard. But I always seem to find a way to bring myself back to my faith in these people and these things -- in the world's absolute beauty, and in my belief that what my Mom told me years ago really is true; that even if my worst nightmare were to come true, everything, everyone that I love really would be OK. Because in spite of it all, human beings really are amazingly resilient. I have the deepest faith in that.

Anniversaries

During the toughest part of my treatment last winter, I booked a three-night stay at the Spruce Point Inn for July 4th weekend of 2013. At the time, the medical bills were rolling in by the dozens, but I went for it anyways thanks to the gift certificates to the Inn that we had accumulated from several of our friends, family, and colleagues. Plus, Spruce Point had sent us a free two-night stay after they learned about my cancer, so we had every reason to splurge without really splurging. 

Despite the Ativan, steroids, Benadryl, and chemo, I vividly remember unwrapping those gift certificates several months ago. I remember crying; partly because I hoped to a higher being that I would be well enough to go back to that place Brian and I had been married, but mostly because I could not believe that people we knew could be so thoughtful and so generous to send us back to one of our favorite places on Earth.

Those good people probably never knew it, but the gift certificates were more than just converted money. Many times, they were the distraction I needed to get from one moment to the next. I remember being keeled over the kitchen sink during one of my gushing chemo nosebleeds, trying to fend off a panic attack with thoughts of sitting by the salt water pool with my husband that upcoming July. When I began this blog post the day before yesterday, I sat by that very pool.

 

Not counting hospital stays or a handful of overnight trips to a wedding, Brian and I have not been away together since before Teddy was born. We talked about this Spruce Point getaway every day for the past few months—about how incredible it would be to play tennis or run together, eat gluttonous desserts (sugar included), and sleep through the night. I started packing a few weeks ago.

Then, the week before our trip, we both got really nervous. We felt guilty for leaving the kids and we worried that we would miss them too much to enjoy it. Brian, the frugal and sensible one, even took Teddy and Annabel to the toy store a few days before we left and let them each pick any toy they wanted. It was their “Nana-Papa-vacation toy,” and Brian’s attempt to spend away his own guilt. I eased my own mind by deciding that if we missed them too much, we would just drive back and get them.

It turns out that we aren’t the loyal guilt-ridden parents we thought we were. Not a minute after Nana and Papa drove away for the weekend with the kids tucked happily into the back seat, we both exclaimed, Freeeee-dom, and we were off.

Brian on our first day away: "We should have done this five years ago!"

For the next three days, we were guilt-free and giddy with joy and appreciation as we lounged around paradise. We kept singing Frank Sinatra’s "Heaven," or better yet, just the first line -- "Heaven, I'm in Heaven..." When I heard a kid crying or complaining, I turned to Brian, smiled, and asserted, "Not my problem." Seriously, the only problem we had at Spruce Point for those three sunny days was not being able to decide what to order off the menu of the world’s most delicious food. And sometimes I needed to reposition my lounge chair so that I remained in the shade. 

There's something about sitting by a pool that overlooks the ocean, and jumping into cool water after a hot run, and lingering after dinner not worried about how the kids behaved for a babysitter; something so peaceful, that it has the power to, well, cure cancer. Because in the last 11 months, I have never had three days where I thought so little about that stupid disease. 

*  *  *

We didn’t make any plans for our three days in Maine, except for one. I wanted to visit the church where we got married, so I called the church office a few weeks ago to see if there would be a good time for us to swing by. When I learned that the reverend who had married us still lead the church, I asked if it would be possible for us to say hello to her. It was, so we made it a date and Friday afternoon, Brian and I interrupted our poolside reading with a trip to see the lovely woman who had married us back on July 8, 2006. 

In catching up about the last seven years, the topic of my cancer surfaced. Then, the topic of the reverend’s son’s cancer surfaced, too. It turned out Brian and I weren’t the only ones who had been shocked by a cancer diagnosis since the summer of 2006.

Six years after finishing a grueling treatment regimen, the reverend’s thirty-year-old son is doing great. Still, she cried twice when she spoke about him—first, when she spoke about the incredible support and the treatment her son received and second, when she spoke about his five year anniversary.

I thought about my Mom when the reverend teared up the first time—about how the reverend and my mother were strangers to each other, yet they had something so huge in common—the experience of having watched their kids, who weren’t really kids at all, battle cancer. And I knew they were very similar because they both tear up not at the thought of cancer's cruel ways, but at all the good that people displayed in the face of it.

When the reverend spoke about five years, I gulped back my own tears. I knew what that anniversary meant to this mother, her son, and hundreds of other people who had held them up along the way. And I felt a tinge of what that anniversary would (will) feel like for me. 

On the way out, Brian and I took some pictures in the same spots we had been photographed seven years ago. And yes, the diminished amounts of hair have been noted.  

  

Having celebrated our freedom, I mean, our anniversary for three straight days, we both totally forgot that today was our "real" anniversary. Both exhausted from too much relaxing, we put away groceries, packed Teddy's Kids' Camp bag, and obeyed Annabel's growing list of morning orders. I have a doctor's appointment later, and thanks to me volunteering him, Brian has spent the day fulfilling our family's four hours of contribution to Teddy's camp (Happy Anniversary?!?). That means that Brian has been making kangaroos out of milk cartons while sweating through his clothes. He just texted me a photo of his newest kangaroo, along with a Happy Anniversary caption. Yes, the no-kid kind of vacation romance sure is fun. Like really fun. But the regular ole crazy kids kind of romance is pretty awesome, too. 

What I Hope for You

Don’t worry about the size of your ring.

Keep your wedding in a healthy perspective. 

If possible, live with the person before you marry him or her.

These are just a few of the several ideas I came up with a few nights ago as I sat snuggled between two strangers in a middle seat of the commuter train. 

I was bursting to write a lighter post, not only because so much of what I've written lately has been heavy, but also because Brian and my fast-approaching wedding anniversary had me thinking a lot about love and marriage (they go together like a horse and carriage...love and marriage...).  

So I thought I'd write down a few pieces of advice for my kids—small thoughts for them to consider as they grow up andexperience love and heartbreak and all of the complexities in between.

I made a list, but it wasn't making me feel alive like my writing usually does, and by the time my train pulled into Canton Junction, I blatantly didn't like the way it sounded. Sure, if my kids followed my list of advice, they may be spared some future pain or, if they were lucky, years from now they may more quickly find a happier reality. But being human, especially when it comes to love, seems more about feeling a whole bunch of different emotions, figuring out what to do with them, and becoming more of who you want to be along the way. In other words, what good would it be to tell my daughternot to care about the size of her ring? Those words were empty, and could onlybe filled by my teaching her why carats don’t really matter; how she would be so much more fulfilled if she focused on something else. (Please note: There is one exception to this don't-care-about-the-ring rule and she knows who she is. Her ring does matter to her, but in the most sincere, sweet, and healthy of ways. And, she has an awesome ring.)

In the end, that list of love advice just wasn't me. Still, I want to write about what Ihope for my kids when it comes to love and, if they so choose, marriage. So here goes.

*  *  *

 For My Kids...

What I Hope for You

Your Dad and I had planned that he would join me for myHerceptin treatment this past Wednesday morning. We arranged your fabulous babysitter to come early and when we tucked you in bed the night before, we told you that we would see you a few hours after you woke up. Yep, your parents had a date at Dana-Farber so I gave your Grandmom the day off—her first one in almost a year of appointments and infusions.

Then, Tuesday night after Teddy's bedtime questions about the Red Sox and I-love-you-so-much-s finally ceased, your Dad and I got into a huge fight. For afew minutes, we yelled and swore and scoffed at each other’s snide comments. Itwas not exactly how either of us were hoping to start our weddinganniversary weekend.

As you know, your Dad and I don’t fight often, but we’re human, and marriedfor seven years, so every now and then, we have a bad night. We make a conscious effort not to fight in front of you, so you may be wondering why I would decide to air this dirty laundry to the world, especially in a post about love and marriage. Ironically, it's because I want you to know what I reallythink about those topics.

I was so mad at your father a few nights ago that I wished he wouldhave slept on the sofa. But he went to bed before I did so I had to suck it up andsleep next to him. I struggled to fall asleep (like you, Teddy) and as I noticed how soundly he was sleeping (like you, Annabel), I got even more mad at him. 

The next morning, after several of Annabel's I-can-climb-out-of-my-crib-now nighttime visits, I rolled over and told your Dad that I wanted to go to my infusion alone. At that moment, I really did want that. More importantly, however, I wanted to show myself, and him, that I could do that. All alone, I could walk into that building that once scared me so much and I could sit in that chemo infusion suite surrounded by empty chairs and I could be strong and content. Alone and alive. Plus, I have a blog, so without bending my right arm (which causes the IV machine to beep in extreme discontent), I could use my laptop to dump on your father for the whole world to see (kidding on that last part). 

Which brings me to the first thing that I hope for you when it comes to love—that in theend, if you find yourself alone, either by your making or someone else's, you will figure out a way to be strong and content. Alone and alive. I know, it doesn't sound all that romantic, but really it is. Because I hope that above all, you love yourself. Not in a snobby or egotistical way, or in a way that brings you stubborn loneliness, but in a way full of healthy confidence, forgiveness, and above all, respect. 

Which brings me back to last Wednesday morning when Teddy was still snuggled among his 55 stuffed animals and Annabel was still patting her blankie. I left the house that morning alone, calm and collected,with my bag and my earphones and the confidence to get my infusion alone.I knew my Mom would pinch hit if I had called her but I didn’t want that. Atthat moment, I wanted to do it  all by myself. Ironically, despitethat she’s always there for me, in the end, I know my Mom wanted to raise her kids to be able to do just that. 

Despite that he was equally as angry at me, as I filled my car's empty gas tank just down the street from our house, your Dad called me and asked (begged) me to come back. I had absolutely no intention of turning around, but forsome reason, I did.

Me and your Dad didn’t say a word to each other the whole ride into Boston. In fact, aside from me giving him my omlet order, we didn't talk during my infusion either. Your Dad just read his little magazine and I thought about my love and marriage blog as my life-saving Herceptin dripped intomy veins.

Your Dad and I made up, as we always do when finally he admits he was wrong (kidding). But we spent a solid day pretending that we liked each other in front of you two. 

Which brings me to my other hope for both of you when it comes to love and marriage. I hope that while you could be happy alone, that ultimately, you find someone to walk, skip, and sometimes, trudge through life with. I hope that you find someone who, even when you don't like her, you know that you love her very deeply. I hope you find someone like your Dad, who wouldn't ever let me be alone for something even slightly painful or scary. Because you know you found the right person when you're so mad at him that you don't even look at him when he tries to talk to you, but inside, you're so very grateful that he's still sitting next to you.

*  *  *

One final thing. When I gave the Preview version of this blog post to Brian to read before I published it, I asked him if he was OK with what I wrote. He was absolutely OK with it, and insisted that I write whatever I feel I need to write (though he also insisted that he hadn't fallen asleep before me on Tuesday night). Which reminds me; I forgot to say one thing about love—try to find someone who will support you when you do the crazy things in life that, for some reason you can't even explain, you really feel you need to do. 

Good Words: Americans

I believe that there lives a burning desire in the most sequestered private heart of every American, a desire to belong to a great country. I believe that every citizen wants to stand on the world stage and represent a noble country where the mighty do not always crush the weak and the dream of a democracy is not the sole possession of the strong. 

~ Maya Angelou, from Letter to My Daughter

As Big as the Sky

Teddy absolutely hates when he thinks that something is gone forever. This tendency makes golfing really hard, because any lost ball is a mini-tragedy. Uncle Sean, his frequent golf partner, has been working on this with him, trying to teach him that it’s OK to lose a golf ball. Sean said he’s made some progress, but I can tell Teddy’s got a long way to go. Part of me thinks that we should buy some of those biodegradable golf balls and drive a bunch of them into the ocean; that maybe he could be purged of his anxiety. Then again, maybe we would have planted the seed of a terrible nightmare. Yeah, forget that idea.

On Saturday, after Mary’s funeral, Sean had just come off a 3-hour video game binge with Teddy when we got to talking about the Aaron Hernandez jersey swap. I told Sean that we were going to take the Patriots Pro Shop up on their offer to exchange Teddy’s jersey. The #81 replica was one of Teddy’s big gifts last Christmas; an effort to ease his pain over the injury to his favorite player (Rob Gronkowski).

When Teddy overheard Sean and I talking about the jersey swap, he lost it. I don’t want you to take my Aaron Hernandez jersey, he wailed in hysterical tears. To calm him down, I told him I wouldn’t, that we would talk about it. I knew that was just a temporary fix, however, and that in the end, if he pushed, I'd have to explain to him that he'd never be able to wear that jersey ever again.

* * *

I didn't think a lot about Mary's funeral until I was on my way there Saturday morning. I would have prepared myself on the run I had planned a few hours before, but once I had my sneakers on, Annabel begged me not to go. Obviously, I didn't. Instead, around 7am, I took her for a short walk around the neighborhood in her umbrella stroller (I've given up on the jogger with its persistant flat tires and vicious pull to the right). Annabel alerted me to every "bow-d" or "skwa-wel" she saw and I tried to keep up my level of enthusiasm. We strolled down the main road for just a few minutes of our loop, and when Annabel asked me why there were no "caws," I explained to her that she should sleep later.

Mary was a devout Catholic. In fact, part of why she moved to the United States was because Catholicism was not well tolerated by the communist government in Vietnam. I'm not Catholic, although lots of my family and friends are. Through them, I’ve been to several Catholic weddings, funerals, and way back in high school, even a Christmas Eve mass.

I have to admit that Catholic churches intimidate me a bit. When I’m there, I feel some fluctuating combination of foreign, curious, uneducated, and rude, especially when people recite prayers that I don't know, when I botch a peace-be-with-you handshake, or when almost everyone but me touches their face with their thumb in response to a cue I have never figured out. But when it's time to listen to what the priest is preaching, I listen. It’s as if I’m a hungry, though very picky eater—every sentence that is tossed out to me is food for me to dissect and inspect; to digest if I decide it's something that I want to be a part of me.

Nina, her brother (who I will call “Ty”), and their father, were all at the back of the church when I entered Saturday morning. I was able to hug them and give them my sympathies before I took my seat. Ty’s hug was strong, kind of what I’d expect from a teenage boy who just lost his mother and was trying so hard to be a man about it. Nina’s embrace, on the other hand, was so desperately weak, as if she needed someone to hold her up. She probably did.

The service was almost an hour and a half long, which made it the longest mass I have ever attended. Except for a two-minute Thank You from Mary’s uncle, it was entirely in Vietnamese.

I’ve heard before that when a person loses a sense, his or her other senses sharpen, as if to try to compensate. At Mary's funeral, I came to believe that that may actually be true.

For the first few minutes of the tribute to Mary, I wished for one of those little ear pieces that they use at the U.N., or even some kind person to whisper the main ideas in my ear. I’d have paid money for subtitles, but I realized quickly that I wasn't going to understand a word of Mary's funeral.

I’d be giving myself way too much credit if I claimed that I consciously decided to “make the best of it” because I wasn’t really in the mood for that. Rather, I so desperately wanted to hear how the priest tried to explain this tragedy to a church full of grieving people. I wanted to understand how he could make sense of the fact that Mary’s beautiful photo sat atop a small wooden box, her body so wounded by cancer that an open casket was not even an option. I wanted some food to fill my starving stomach and some comfort to ease my aching heart. I know, it sounds so selfish of me. I could pretend that I watched Mary’s family the whole time to see how they were doing from their inner circle. But I didn’t. Instead, I mostly stared at Mary’s gorgeous smile in a big gold frame.

Still, I listened, just not to words. As the choir sang, I thought to myself that I have never heard music more beautiful. It wasn't solemn, even though it had every right to be. It was bold and humble; reverent and strong; sympathetic and hopeful. It was, well, just like Mary.

I watched the priest pace at the front of the stage, trying to comfort people that he seemed to know. His tone fluctuated from one posing delicate questions to one posing possible answers. After I gave up wondering what those answers may have been, I merely felt comfort in watching this man who seemed, so sincerely, to want to help.

And I saw cameras—two video cameras and one digital zoom. The Vietnamese cameramen recorded everything as I have only seen done by wedding photographers. I was so fascinated by this; by a culture that would, in a way, embrace a funeral as a life experience. I wondered who would ever go back and watch that video, and why they would do so. I had so much respect for a family that would choose to memorialize a significant event despite how tragic it felt to them. The act of doing so felt so very honest.

In the end, Mary's funeral was one of the most spiritual experiences of my life. I can't even rightfully explain it, but there was something surreal and awesomely powerful about those few hours of Vietnamese prayer and song in the midst of an otherwise totally regular and fun-filled weekend.

On the way home, I clicked past a radio station that was talking about the Aaron Hernandez jersey swap; about how the ex-football star was essentially being erased. All of the sudden, what had felt so tragically unfair to me a few days before felt so very different—not necessarily right, but somewhat more just.  

I realized that I will erase my son's memory of Aaron Hernandez by getting rid of an over-priced shirt. But my kids will always know about Mary. One day, I'm sure they'll understand that most of the world's greatest heros never got a jersey with their name on the back. They just had kids. And they loved those kids more than anything, or, as I now tell Teddy and Annabel, they loved them as big as the sky....all the way up to Heaven.