Living Strong

It was a little over seven years ago, in May 2004, when Melanie had her first cancer surgery, and while I was not aware of it at the time, that is also the month when Lance Armstrong and Nike put their heads together to begin an ad campaign that perhaps gave many cancer survivors a new way to view their cancer. Collapsing two words into one that says it all Livestrong. Attempting to take away the cancer = death analogy that so many of us have long carried, the new word resonated in the imagination—a place that can lead to envisioning a new way out of the old. Reminding cancer survivors, their family, and friends, and the world that cancer is something that today millions live with AND that living is the operative word. While still a killer, many cancers have been tamed; others even eliminated.  Hearing that new word Livestrong made so much sense to me then and now.

 Melanie was the first one to procure one, but very quickly Chris and I acquired them and bought some for Justin and Farracy. Without any discussion we wore them daily. It was a way to silently stand with Melanie in the scary face of metastasized cancer In fact, maybe it was not having to say anything that helped the most. We could wear them with no explanation or second-guessing on our part and the way they became ubiquitous made it easy.  It seemed that the world was poised stand in solidarity with those who affected by the disease with a myriad of faces.

Selling for just one dollar each, Lance and Nike set the ambitious goal of raising $25.1 million dollars. Who would a have imagined that a plastic bracelet that no grown person would be caught wearing a few weeks before, would reach their target goal in six months? Becoming the instant rage, they were almost impossible to get your hands on.  While known to think big, even Lance must have been as shocked by the chord he struck in the American psyche—perhaps as shocked as he was several years earlier to discover that he had won a fight against the testicular cancer that had metastasized to his brain and lung.  But Lance is a man of audacious goals; that is the kind of guy he is so perhaps he was not surprised at all.

Since 2004 I have pretty much worn the bracelet continuously. It became a talisman. In those earliest years, when I felt helpless to do anything to help Melanie, serving as a visible reminder that I too needed to Livestrong—for her as well as for myself. After she was able to move out of our home and lived on her own, it made me feel closer to her—present without hovering (which I so desperately wanted to do). And when she was in the woods or at sea for 40 days, I think I somehow believed that by wearing it, she would have a sign and know that I was standing with her. Yes, there was a lot of magical thinking going on, but it helped.

Wearing that bracelet also helped me know I was not alone in standing with a loved one with cancer. Glimpsing a bit of yellow under the cuff of a shirt or blazing out on someone else’s bare arm reminded me that Melanie is not alone in this fight nor is her family. And I am not alone. There are others—others who are trying to live their lives with dignity, meaning strength, and cancer. Seeing that bracelet on others served to make me more compassionate. While never knowing whether the wearer was a cancer survivor or someone who loved one, my heart reached out to them—made me see them in a way I might not have otherwise. For every wearer, that childish bracelet points to a hidden pain in the life of another, and seeing it, I pause, and honor, and stand with that pain. It has brought me deeper friendships.

Lately I have been considering taking it off. At Melanie’s and Ben’s wedding it was conspicuously absent. No one there, least of all Melanie, needed to be reminded that living strong was part of the celebration. It is such a part of how she has chosen to live her life in spite of cancer.  With Ben bringing to their life such great love and strength of his own, living strong is just part of who they are.

Melanie has taught me much not just about how to live strong with cancer but about how to live, period. For all of us, the bracelet has been one of those outward signs of what has become an inward strength and grace. Hmmm…sounds awfully familiar. A little plastic bracelet sacrament—blessing those who wear it. And perhaps like many sacraments, eventually, those visible signs become internalized—lived out in the world. The water of baptism dries off and the baby is loved into a new life.

When I began writing I thought I would be writing about taking my yellow bracelet off, but now? I am just not so sure. So at least for today I will wear it remembering what it has taken for my daughter to learn to live with cancer. And I will wear it for all those whose lives are troubled by cancer; for those living strong with it and all who love them. I will wear it for those struggling just to get through the next hour, or day, or the treatment. I wear it for those who have lost a loved one to the ravages of cancer. I will live it as a reminder that none of us fights this battle alone. LIVESTRONG…

Always a Daughter

It has been thirty-three years, and two hundred and fifty-six days since I became a mom but it took a while to sink in that I would always be one—no matter what. When Justin and Melanie were young, it was a no-brainer. As soon as Justin was born, it was clear that no matter how many siblings might join him, I was marked for life with another pulse beating in my veins. I don’t think it was just the fact that they literally used my body for an incubator because I know too many moms whose children came in other ways who feel that lifetime bond.

It wasn’t until much later as Justin and Melanie moved out into the world that I began to wonder if that bond is broken by distance or by simply growing into a new life. The separation that came with college definitely got my attention as I wondered if that was it. Did their distance mean that I was less of a mom? Had I lost them forever? Copious tears flowed and I felt like a barren cliché.  Proud and happy for them and the excitement that came with their voices, I was totally miserable and yes if I am honest, afraid. Afraid that something had ben irrevocably severed.

It took awhile, but gradually that fear was replace with the realization that no matter how far away my kids might roam, I would always be a mom—specifically their mom. The bond built on laughter, tears, sickness, vacations, fights and boredom, fires and faith was and is real. Over the years, there have been moments in time when the motherhood connection even deepened. When Justin married, that bond with him remained, and yes, widened to include Farr. And watching my son hold his minutes old child broke my heart open with joy.  On the other hand, Melanie’s cancer brought her back home in a way that I do not wish on anyone. And yet… And yet…I learned that walking with her through her cancer journey bonded us closer together. As a mom, I wanted to take that cancer from her and would have willingly assumed it for her if that were possible. While cancer can bring a family to its’ knees, ripping them apart, it seems to me that more often from that kneeling position a family can learn to stand again, supporting each other in ways they might not have comprehended before.

The mom musing really began this week on a last minute trip to visit my mom in North Carolina when I belatedly realized that she was going for Homecoming at my grandmother’s tiny country church outside Bedford, Va. –a pilgrimage I have made with her several times in the last few years.  In this little church –St. Thomas Episcopal Church—my great grandmother worshipped with her five children. It was where my grandmother was married, where my great aunts and uncles worshiped until they died, and where my great aunt (and Godmother) played the organ with enthusiasm as she belted out hymns well into her eighties—her screechy voice hugely embarrassing to me as a child.

That little church means a lot in my mom’s family. Near the homestead that housed my great grandparents who had immigrated from their native England, it was the spiritual center of their lives; it is where my ancestors are buried. In that space, I felt my matriarchs looking over my should, whispering in my ear reminding me that I come from a long line of mom’s who gave life to their children.  With the shiny hard wooden pews digging uncomfortably into my back, I could picture my great grandmother's darting looks at her row of four squirming girls and tiny son, and feel her angst sending her girls one by one to England for months at a time to visits with Big and Little Granny at her childhood home.

In that tiny church, I could only imagine the pride of my Granny as her son graduated from Annapolis and the heartbreak as he head to the South Pacific commanding troops landing on bloodied beaches; the love of her daughters and their families. Though long dead, for a moment it was almost like she was right next to me, her cool skin next to mine, her strength, fierce determination, wicked sense of humor, and faith holding me still.  

And sitting beside me on Sunday was my mom, who has lost her grandparents, parents, brother, sister and perhaps most crushingly, her husband of forty-nine years now struggling with dimming eyesight.  While she might never express it (that is not her way) I know, too, that she has suffered with her children living so far away. The woman who lived most of her life only blocks from her own mother, now copes with a son in New Mexico and a daughter in Boston. She has agonized as Melanie dealt with cancer and as I struggled as a mom to cope. And she has longed to watch her grandchildren grow up as her mother and her mother’s mother did. 

Last Sunday, perhaps for the first time, I had a glimpse of the long line of strong mothers who came before me--those who fixed cuts and bruises and nagged their children; those who smiled with joy at their children’s and their children’s children’s lives; those who silently wept for them and prayed daily for their lives and who for the most part would be puzzled at my vocation as a priest in their beloved church. Sitting with them,  I was, I am, filled with gratitude--gratitude for their blood flowing through my veins. Even more I am grateful for the blood, and strength, and courage of generations flowing the body of my daughter.

Summer Family

As summer has been dwindling down, restlessness has set in. Wanting to hold onto the warmth a bit longer, the cooler evenings warn that is not to be. It has generally been a pretty spectacular season of boating as well as deepening friendships in our little corner of the world on at the marina reminding me that family can be  made in many different ways.  D Dock is the quirky community we inhabit for six months a year. Beginning in April or May, week after week, we show up in various configurations; some to stay aboard for days on end, while the rest of us congregate on long weekends. Impromptu parties and potluck dinners organically evolve as the sun sets behind the Zakim Bridge. Invariably there are gaps on the dock each week as one friend or another departs on an adventure for days or weeks and like a temporary tooth crown, a visitor is plopped in to fill the gap. But no boat pulls into or out of D dock without extra hands and a welcoming face to handle lines.

Each year, friendships of years are renewed and relative newbies like we are (7 years in various slips on D dock does not begin to constitute an old timer) are invited into the scene. Birthdays are celebrated, wedding pictures are ohhed and ahhed over, and we grieve with those who lose a friend or relative. Melanie's check-ups are watched over, and the pictures of the California clan are admired. Cheery sendoffs are shouted as some head to high school or college reunions . We know the status of children, and grandchildren, and parents we may never see in person. But when we do, their stories come back from the accumulation of lazy afternoons sharing food, drink, and conversation on the back of a boat.

Through the summer, D dock is a moveable feast—literally. On a Friday night someone suggests an overnight trip to a nearby harbor; before you know it, a scouting party is on their way, setting up a new camp with different scenery.  With sailboats leaving early, power boaters always dock first to help with lines on each arrival. A Sunday afternoon may find dock boats tucked behind a Boston Harbor Island rafted together as folks scamper over gunnels moving from boat to boat passing food or drinks on the way.

And in the meantime, problems are solved, or at least discussed at length—politics, the economy, the Red Sox, families, friends, books, planets and stars and oh yes, the Red Sox.  When a mechanical problem crops up, (and they crop up often on boats) men converge while a few women cheer from the sidelines as the problem is diagnosed. Tools are shared and our resident mechanic extraordinaire Rick is put into service. In fact, no task is too small to receive advice, encouragement, or extra hands.  Food, food, endless food is consumed and potlucks can form with the tiniest hint.

Of course, we all have other lives but D dock is a place we can leave that all behind or bring it if we wish.  But while I love this summer community, it makes me miss my family so far away. I would like to for them to know these friends who, for the most part, they have met only briefly. It makes me hunger for those days when my grandparents lived a block away and I could run back and forth—knowing their home as well as I knew my own. Even with Skype video chatting, every few months in not often enough to see our children and grandchildren—to have the regular easy flow and exchanges that seem to happen in our summer world on the dock.

Too soon, boats will gradually leave taking their crew to their far flung homes  around Boston. (With the exception of our October Sky friends who will come back next summer with months of adventure to share.) Sprinkled with a few gatherings in the months to come, we will be Facebook friends for winter and early spring until we converge again. Still, at least for now, we have a few more weeks to savor our time together, and I have time to book those flights for a California Halloween.

 Just a few of the fam

A poem for today.

On the day after September 11 when I am feeling saturated with images and memories, this came across my computer from the Writer's Almanac. It feels like something I need to share.

The Word

by Tony Hoagland

Down near the bottom
of the crossed-out list
of things you have to do today,




and "broccoli," you find

that you have penciled "sunlight."

between "green thread"


Resting on the page, the word

is beautiful. It touches you

as if you had a friend




and sunlight were a present
he had sent from someplace distant

as this morning—to cheer you up,




and to remind you that,

among your duties, pleasure

is a thing



that also needs accomplishing.

Do you remember?

that time and light are kinds



of love, and love

is no less practical

than a coffee grinder



or a safe spare tire?

Tomorrow you may be utterly

without a clue,



but today you get a telegram

from the heart in exile,

proclaiming that the kingdom



still exists,

the king and queen alive, 

still speaking to their children,



—to any one among them

who can find the time

to sit out in the sun and listen.

"The Word" by Tony Hoagland, from Sweet Ruin. © University of Wisconsin Press, 1992. buy now

We're back...

As you might imagine given the weather chatter, our fabulous two week adventure on the water turned into a lovely four days on Martha’s Vineyard and now a staycation as we prepare Angel Fish for what we are hoping is a hyped up storm. There is a flurry of activity at our marina. While in a very good location in Boston Harbor, it is probably not in ideal condition to deal with the best-case scenario of 3-5 foot storm surge and big winds. (The worst case is higher). So, those eating out dollars have gone to more fenders and lines, and there is much wait and see for the next few days.

Still, there will be a celebratory dinner out as today Chris and I celebrate our thirty-ninth wedding anniversary.  It was a typical hot muggy August Chapel Hill day when we tied the knot—not all that different from our weather today. We headed to the beach for the following week with no storm then to deter our fun. I have often wondered what my twenty-three year old self expected life to look like in the years to come but honestly, I have never been one to project out far into the future. Other than being fairly certain that children would be part of the picture (thankfully in due course, Justin and Melanie came along) the rest just developed year by year as we moved and changed careers, made friends, keeping some and losing others from time, distance or lack of effort (the last being the ones that hold the most regret.)

Our lives have been shaped by conscious choices and random events. There was a time when we both worked in the public sector and the winds of politics dictated where we might live. Grants came through or didn’t, children were born, new opportunities opened for Chris, and my mid-life encounter with God changed the course of our family’s life as well. With the addition of in-laws and grandkids, my life, and our life as a family, has become deeper and richer than any I might have imagined those thirty-nine years ago. 

But it was not always easy; no life ever is. The hurricanes in our lives have bonded us as much, if not more, than the joyful times. There were fires and deaths of parent and loved ones, and the natural order of children growing up, leaving the nest, shifting the balance at home making for big adjustments all around. And there has been cancer. When everyone has been in a state of panic over the coming of Irene I keep thinking well, it’s not cancer, or a heart attack, or diabetes, or any one of a number of scary and life threatening diseases. (Remembering working in Biloxi. MI after Katrina, please know, I am not trying to minimize the destruction, pain, and havoc as people will have their lives turned upside down.)

It is just my perspective; I lost my dad to cancer way too early, and to have a child diagnosed with cancer is far scarier than having our house burn in 1989. Then we lost “things”—yes, almost all our things—but things could be replaced. Even while watching a smoldering home, I knew we were lucky. We had our family; that was what mattered most then and now.

So while Chris and I have had our hurricanes and as we prepare for another, I find myself filled with gratitude for the life we share. (Grateful for Justin and Melanie, Farracy and Ben, Jackson and Cooper and for my mom still lively at 86 as well as those family and friends who enrich our lives daily.) After all, a vacation, is a vacation, is a vacation and there will be more. So, no matter where we are Happy Anniversary, H. I love you and here’s to 39 more…H.B.

Out and about for a while

On these last two weeks of August, Chris and I have decided to make the most of Angel Fish time. We're headed on the high seas--well, we hope not too high--and will be back for Labor Day weekend. In the mean time, Melanie is out for eight day with the women of Grace Church and some day I hope to join that crowd as they hit the mountains. All that said, I seriously doubt there will be any posts but probably much food for the soul and maybe eventual posts.
Peace of the running wave to you all
Susan

P.S But I will miss our Boston views.

So why does it feel like this?

Check. Done. One more cancer exam for Melanie is now history and as far as we know it was pretty great. (Blood test results won’t come for another week.) Still, she had her scan and Chris and I made it to NY in time to see her walk out of that with a tired smile on her face. (Maybe a bit too much partying the night before at her friends’ Mark and Myna’s wedding.) Dr. T has moved his office and is now only a couple of blocks from where she get scans so we had time to catch up, hear about the wedding and her time with old CC friend, Kristin and grab a bite to eat.

Dr. T’s new digs are a vast improvement from the old ones; eight doctors share a space that is quieter and much less crowded. Melanie and I occupied the usual one hour wait with a word game on the IPad—an early anniversary present from my hubby. She was called in, and after showing him a picture from the wedding (Yes, I do carry some at all times—along with pictures of the grands.) ;the visit was short and very sweet. Melanie’s scan was stable with just one little tumor hanging underneath the scar from three surgeries seven years ago, but it is long and so thin he’s willing to let it just stay unless something else grows with it. But the big news came when he said, “Well, why don’t you come back in a year.” Satisfying words, since we have been making this trek twice a year for seven years, and for the past two years that trek has meant a cross-country flight for Melanie. As I have said, her cancer grows slowly so since last year’s surgery to remove two tumors, nothing new has appeared.

Almost as exciting as the news of a year free of tests was seeing Dr. T’s face when we asked about his research. Beaming he said that he is having excellent results with a pill that might very well help Melanie in the future. It was the first time we have seen such enthusiasm and hope for something new. Melanie happens to fall into a relatively small number of thyroid cancer patients that has stopped responding to radioactive iodine treatments—the treatment du jour for most papillary thyroid patients.   Along with several other doctors, Dr. T’s has found a pill, which if taken a month in advance of radioactive iodine treatments has shown to allow 50% of patients like Melanie to once again have the treatment work effectively. In other words, down the road, he believes she might well be a candidate. This is exactly what we (and so many others) have hoped for—a new possibility where none previously existed. It is what every cancer patient and every one who loves them dreams of.

So I should be ecstatic, right? Chris and the rest of my family are. The messages on my Face Book page abound with cheers, hurray’s and blessings, and believe me, I AM grateful and happy. Still I have been in a foul mood since returning home and it took a while to figure out what is going on.

I think I am feeling a bit like Melanie as we left dr. T’s office when she said quietly, “It’s great news, but I just want to be able to have a party.”

“What kind of party I ask,” fully knowing the answer.

“A ‘My Cancer is Gone Party.’”

And there it is. More than almost anything in the world, that is precisely the party I want to be able to throw for my daughter. I want to have a party with cake and balloons and bubbles. I want to never have to celebrate another cancerversary with Melanie. I want to take those Livestrong bracelets that her father and I faithfully wear and bury them in the woods or toss them out to sea. I want no more scans or trips to the doctors or wondering when the next shoe will drop.

But that is not going to happen any time soon. Melanie knows it and I know it, too and that my friends, is just kind of an awful reality to live with. It stinks and it is part of her life and the lives of those who love her.  The good news is that we can all live with that. Her life is strong and vital and her cancer has made her more of both those things. She should not have to cheer because she can put off the inevitable for a year. She is allowed a moment of regret and sadness once in a while. And so am I.

I would worry for her if she lived her life in that space of regret, but I know she does not live there, any more than I do. Way deep down, we both know that she is lucky in her cancer journey. There are so many whose cancers are more debilitating—whose treatments are devastatingly painful and frequent. I feel such gratitude for excellent medical care she receives and for the abundant love that surrounds her on this journey, and I know she does as well. And I have seen my daughter flourish with spirit; grasping life and giving life to others. That is who she is as much as what she does.

But to my daughter (as well as anyone else dealing with this nasty disease), it is ok to be mad, or sad , or just generally pissed off once in a while, and I may join you in that space, too.  Only remember, just as we danced the night away not that long ago as you and Ben became husband and wife, there WILL be parties—many parties to come. That is a promise.