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.

The cleaning frenzy

This morning I found myself digging deep into one of our kitchen cabinets, examining items--sorting, throwing, saving-- before scrubbing it down. While not something I do often, when the mood hits, watch out. With daytime T.V. background noise (no, not the stock market) I threw away a half eaten box of cookies so rich I could not bring myself to indulge in them. Then there was a baggie of some chocolate candy left over from my best daughter-in-law in the world’s visit in May. (Not that I don’t have my private stash hidden in another place.) Stale partial bags of nuts and some rock hard raisin pebbles that had seen better days—gone. After the spray-down with the all-natural cleaner, it was neat, almost empty and awaiting a Whole Foods run.

Feeling virtuous, I began to wonder what brought on this sudden urge to clean. Usually the impulse comes during a transition—a change of season, a child moving out, finishing one of my interim ministry calls. Perhaps I was just feeling the let down from the departure of my BFF, Sue, and her husband who had visited for a week. Missing her terribly with her life now based in Florida and mine in Boston could easily have triggered a need to put order into unsettled part of my life.

Then it hit me; the check-up. Next Monday we are meeting Melanie in New York for her next visit at Sloan Kettering Hospital. If there is one thing I have learned over the last seven years, it is that the week preceeding a check-up for Melanie is fraught with emotional landmines lurking about. Without realizing why, I get moody and a bit testy.  Like a summer storm cloud gradually forming on the horizon, I am barely aware of its existence until it gets closer.  Without even realizing it, I find myself reaching for an umbrella or even foul weather gear just in case.  

Maybe it goes back to thinking if I only I had been more observant, noticing those clouds forming nine or ten years ago I would have seen the tsunami bearing down on Melanie and protected her. (Doctors have told us that given her advance stage when diagnosed, her cancer had been growing for at least eight years)  If caught earlier, she might have been spared a lifetime of monitoring and treatment. Most days those regrets stay hidden like those rock raisins in my cabinet, but just when it seems I have disposed of them once and for all, they resurface triggering some pretty unproductive thinking.

 

So while excited to see Melanie for the first time since her wedding, it means facing (again) this love/ hate relationship with her check-ups.  Always hoping for the “good news” scenario--no changes in scans and steady blood work--for seven years we have been making this trek with fingers crossed and varying luck.

You might have noticed I keep using the word “we” because that is one of the ways we have chosen to support Melanie. When it comes to cancer, Melanie moves with an entourage. As her parents and her brother and SIL, it is a promise we made her seven years ago, and it is one that Ben has embraced with such love it brings tears to my eyes. Although it is Melanie’s life and body impacted, she does not do cancer alone.

After so many years she, and we, know the drill well. Melanie flies to NY while Chris and I hop the Acela from Boston. Melanie and I each carry trusty little notebooks, listing her blood numbers for the past seven years This weekend Melanie is attending the wedding of a high school friend first, so for us it will be a turn around trip as she is anxious to get home to fabulous Ben before heading to the wilderness later next week.  The first part of the day Melanie will spend running from place to place getting whatever scan has been ordered  (an ultrasound and every year or so a CT scan), checking with the business office to update her new name, and grabbing lunch before heading to the Sloan on the Upper East Side.

Entering Dr. T’s office is always a bit of a shock—the waiting room bursting with thirty or more mostly silent older folks in various stages of health-- a sober reminder that this is generally not a young person’s disease. Even though thyroid cancer is the fastest growing cancer in young women, we rarely encounter another patient under fifty. It is not a place my vibrant daughter should belong—yet she does. Although Dr. T runs a pretty tight ship, the wait feels tediously long,

When called, Melanie leads the entourage to the barren examination room— for years, the same one--with a window overlooking a park across the street. Again we wait. The rest of the appointment is teaching hospital routine with first a research fellow asking questions about medications and Melanie’s general health—much of the same material Dr. T will cover when he comes in.  Sometimes information is pick up in that session, but our real questions wait for Dr. T who appears a few moments later carrying the results of her scan and a smile that lights up the room no matter what he is holding in his hand. Besides the fact that he is a first rate doctor, his demeanor, attention to Melanie, agility with any question we have, and hearty laugh remind us that Melanie is in the most capable, caring hands possible. This is the man who tells her each visit that it is her job to live life, and his to tell her when she needs to take a moment to deal with her cancer.

In so many respects, she is lucky. She has choices and resources unavailable to far too many cancer survivors, and unlike many other cancers, even though hers is metastatic, thyroid cancer grows and spreads slowly. Once initially treated, there is generally not the urgency to treat found in many cancers; Melanie can plans the timing if treatment is required.

The initial chitchat delays the news we really are anxious to hear. Is there anything new on the scan? The other news involving a blood marker must wait for ten days-- a huge disadvantage to not living locally, since the test takes a week to ten days to process. Questions are asked and answered; then it is all over.  Perhaps twenty minutes has elapsed with the doctor. All that is left is for Melanie to make her next appointment, get blood drawn, and for us to put our head’s together reconstructing the nuances of any new information we might have gleaned and asking each other if we heard the same things. It is amazing how often that is not the case.

It is all surreal. No matter what has been learned, only twenty minutes have lapsed. That is it. Too soon it is time to leave each other. Hugging, squeezing extra tight for good measure, we will say goodbye with storm clouds or crystal clear skies following us even as we go in opposite directions. Home again, her life and ours will resume, hopefully with my kitchen cabinets, save one, remaining in their familiar disarray for a bit longer.

 

Be safe...

A couple of weeks ago, I got a call from Melanie—short and sweet-- as is the custom when she is at a base camp for Outward Bound. “ Mom, can you call me back on this land line?” (Why is it that OB bases are never in a place that has cell service? Dumb question, I know; that’s the point. Wilderness.)  Calling her back, she told me she was leaving the next day and would be back in five or six days.  As part of being Course Director for two groups already in the field, she needed to meet up with them: hike in, find each group, check in with staff, then reverse that trip. She would be leaving at noon the following day, hike until dark, sleep out under the stars, then hike for another eight hours before meeting up with the group. Innocently asking who would be her hiking partner, she stated that it would be a solo trip.

Okay, I have to tell you that for me, that is just a scary scenario. Hiking alone, in the dark, carrying sixty pounds, trudging for miles with a map and compass. Like I said, “scary” is the nicest words I could use to describe such a venture. When asked if she was worried about this solo part of her job, Melanie said, “Mom, I’ll have a sat. phone.” “Well”, I thought to myself, “ I am sure the bears will be completely aware of that.” For a person who finds the wilderness daunting and yes, a bit terrifying, her joy in this activity is a mystery. Just walking my dogs through our local trails at the nature preserve, I have the urge to bring breadcrumbs (or my trusty daughter) to lead me back to my car. Every fork resembles the one that I thought I remembered from my last hike, but I’m just not sure. But that is my “stuff” so I mumble a simple “Be safe”-- words I have learned to use to “let” her go. (As if I had any choice.)

All this got me thinking about how on earth she got this brave (reckless) and smart (totally stupid), to attempt such an endeavor. In fact, how did either of my children get to the point that they are doing such incredibly difficult and taxing things with their lives?

(Justin’s childhood passion for epic stories, over the years developed into a career in the video game industry. (Thank you George Lucas!) Now as Game Director in the last throes of a two-year production cycle, he works sixteen-hour days, seven days a week while being husband and dad to two rambunctious boys. His story is it’s own and one that deserves another blog entirely but being Always a Mom, he is never forgotten. )

With Melanie, the desire to be on the go started early-- the younger sister keeping up with everyone, especially her big brother.  Appearing fearless from an early age despite more than her share of childhood illnesses, jumping, climbing (as a two year old, dancing on the kitchen table when my back was turned), and skiing morphed into tumbling, and hurling her body with abandon when she discovered gymnastics at age four. Tenacious, she was daring and bold, determined to be her own person.

But it was at age fourteen when invited on a wilderness-backpacking trip that she discovered a world that sustains her even today. After climbing mountains in the Cascades, the returning to her suburban existence paled to the mystery she discovered in the mountains. Struggling up rugged mountain passes life was vibrant.  From the peaks-- miraculous. Except for 2004 when cancer treatment was in its’ earliest and most virulent form, each summer since she has spent significant time hiking, rock climbing, kayaking, trekking up and down hillsides breathing passion and expectancy into her in the same way that stories energize and give Justin life.

Eventually there was work leading trips, but it is an industry that is seasonal, challenging, exhausting and largely without benefits. Why does she do it? While she is the best person to answer that (Mels want to give it a shot?); it is hard for me to comprehend that drive to take on a life filled with risks and hardship.  

Then I remember the sound of her voice when she emerges from the woods and, I “get it”.  Maybe the first time that happened was in the summer of 2005, a year after her cancer diagnosis and surgery.  Melanie was scheduled to co-lead a fourteen-day trip in the Pacific Northwest. Having watched her struggle for a year with her energy, I was not at all sure she was up to the physical demands and I was worried. After flying west, she took up residence in my thoughts as we vacationed on our boat. One muggy Saturday after she had been gone a week, Chris and I sprawled on a lawn listening to music in at the Newport Jazz Festival, when my cell phone rang. It was number that had far too many digits and I almost ignored it, but picking it up, I heard Melanie’s voice clear and strong, “Hi Mama!!” Knowing my concern, her wise co-leader, our friend Bill Harper, had let Melanie sneak off with the satellite phone to call and say all was well. But she did not have to tell me that; I could hear it in the strength and tenor of her voice. There was a revived of hope and joy I had not heard for months. (A week later calling the Harper’s home I was told she had been sleeping for eighteen hours.)

Even having sapped all her energy, that trip healed far more than it drained her.

Perhaps for the first time I began to comprehend how much working in the wilderness can be life giving. Living in, and being a student of, the wild, builds courage and wisdom; doing it with others teaches cooperation and mutual interdependence—something it seems our world could use a bit of right now. Interacting with at risk youth, Melanie has also seen how the experience impacts young hearts, minds, and actions as students come to find an inner resolve they might never have suspected was in them. Standing with youth as they find direction, hope, and perhaps even a new place in the world seems to be worth the exhaustion and lack of steady income.

I was not surprised when several years ago she announced an epiphany that had come to her. She wanted to take other young adults cancer survivors into the wilderness, and she set out to find a place to do that. An Internet search confirmed her suspicion that few such opportunities exist. But then she found a newly forming nonprofit called True North Treks. If you haven’t done so before, please look at their website (www.truenorthtreks.org) and some of the amazing folks who are part of this organization. In a few weeks along with several colleagues, Melanie will be leading the second True North Treks trip, this time on the Olympic Peninsula.

Now I hear Melanie tell me of some adventure and as scary as that might be to me, I have come to deeply appreciate that this is part of who she is and a gift she gives others. So while I may wonder where she got it, I am glad for her and for the world that she did.

P.S. And today I say my “Be safe” prayers for all who are “out” right now (including my son-in-law, Ben).