Veterans Day 2016

Two years ago

Except for a few family trips, David has not gone anywhere but his twice weekly appointment at Mass General. It’s been five months since the transplant, five months of avoiding public places. David still has a minimal immune system, that's not going to change, but I ask Dr. Fathi if he can at least go to church. David starts attending, wearing a face mask. One Sunday a visitor comes up to us. I expect him to say something sympathetic, but he looks at David suspiciously and obviously wonders if he has Ebola.

Veterans Day 2016

Jim and I walk to Lexington Center, arriving moments before the Veterans Day parade steps off. (We usually jog the last few blocks, since we never leave home early.) We shake hands with Bill Mix, a longtime Minuteman who started the William Diamond Jr. Fife and Drum Corps. (Annie and Sam joined at its inception in 2002.) On this glorious bright autumn day we walk alongside the high school band as they march down Mass Ave.
Mr. Jeffrey Leonard, long-time band director Coordinator of Performing Arts for the Lexington Public Schools, steps aside for a moment to tell us that the chorus risers are in. They were purchased in part with a donation from David’s insurance money.
The parade winds around the Lexington Battlegreen, then heads back down Mass. Ave to Cary Hall. The program starts at the eleventh hour of the eleventh day of the eleventh month: the 98th anniversary of the Armistice that ended World War I. The police color guard posts the colors; the veterans of each branch of the military stand as the high school band plays their respective service song. Two Vietnam vets speak as part of the 50th anniversary commemoration. They remind us that they did not come home to a hero’s welcome, but faced public anger and bitterness.

As another speaker, Gina Johnson, is introduced, I realize that she made a pencil drawing of David from a photo. We received the original drawing. For her volunteer mission, Operation Home Ties she draws a “memory portrait” of each fallen serviceman and woman with ties to Massachusetts; she posts a copy on her travelling tribute wall.

We hadn’t noticed it, but in the foyer is a large display, about 8 feet tall and 30 feet long, of penciled portraits. After the program, we view the wall and find a small copy of the same line drawing that  hangs on my office wall. We walk over to Gina and show her David’s picture. Through my tears I’m able to thank her for her thoughtful service to us.

Transformative Music

Two years ago

On October 23, 2014, David starts a ‘phase one clinical trial’ of cabozantinib. He takes a pill each morning and we go to MGH twice a week for bloodwork. For the first two weeks, David is allowed to take hydroxyurea, a standard workhorse of a drug (first synthesized in 1869). It doesn’t act on the bone marrow, where the leukemic cells are produced; it just keeps the white blood cell count low.
We drove to New York a few weeks ago, visiting Peter, Xiomara, and little one-year-old Andrew, R’el, and my dad. R’els Oratorio Society of New York performed Haydn’s The Creation. His depiction of the creation of light radiates splendor.

From my blog:

David was happy and talkative. Saturday morning, he carried Andrew from the apartment to the car a few blocks away. Sunday, he walked to church (8 blocks) and back (E. 95th St. to E. 87th St.). He just sounded like the old David, sparring with Peter, saying interesting, intelligent things. I savor it.


First week of November 2016

Sunday morning, November 6, radically changes Jim’s and my life. Jim is called to be a counselor in the Cambridge MA Stake. The Cambridge Stake consists of thirteen congregations. We don’t know all that his new role will entail, but it will include counseling with individual stake members and leaders as well as administrative duties. We do know it will be a spiritual stretch for us, and a great blessing in our lives.

Last night, Jim, four of our friends, and I shared an evening with 2600 others at a concert by the Boston Philharmonic Youth Orchestra at Boston Symphony Hall. According to Wikipedia, Symphony Hall is one of the top three concert halls in the world. The shoebox design creates an unparalleled acoustical experience.

The young players, all under 22 years old, play with fire, intense energy, and passion. Benjamin Zander is a force of nature; he inspires his musicians to musical heights I’ve never heard before. (Watch his 21-minute-long TED talk, "The Transformative Power of Classical Music".

The crowning jewel of the concert is the Sibelius Violin Concerto, played by Mo Yang, a young Korean violinist. For nearly 40 minutes, his every move holds us captive.

I love listening to classical music recordings, but I’m not sure I can ever listen to this concerto on a recording again. I don’t want the whole body experience of last night to be overlaid with anything else.

New Calculus

Two years ago

Early November 2014

On October 15th, Dr. Fathi states that once the conventional treatments stop working, David will probably die within two months. I live with a new calculus to my life: every week that the treatments keep the leukemia at bay pushes back that two month deadline.

Approaching my 60th birthday

I’ve successfully navigated writing about the toughest week of David’s illness, mid-October and the pronouncement, 'infinitesimal'. (When he died was tougher, but then his illness was over.) Now begins the remembrance of living week by week, blood test by blood test.

I haven’t had any gut-wrenching pulls into intense grief since that sunny day on an Arlington sidewalk two weeks ago. I do often wake up with a diffuse anxiety. I don’t even try to tease it out: does it matter whether the grief of David’s illness and death is 30% of my pain or 80%? I don't think so.

I had a wonderful evening last Tuesday. Twice a month I host a women’s writing group. Sometimes I’m the only one attending. The first few times that happened, I took it very personally: Nobody Likes Me, Everybody Hates Me. My Bryn Mawr friend, Stacie, taught me that song when I was feeling sorry for myself, forty years ago. (Yes, I just counted them on my fingers: exactly forty.). Now I’m at peace about it. When no one else comes, I sit down and write by myself. If one other person comes, we have a cozy tête-á-tête. Three of us changes the dynamic: not better or worse, just different. I show up every time; often another friend or two joins me.

          On Tuesday, Jennifer came for the first time, with her adorable six-month-old. She worked on the story of her daughter's birth; I worked on my blog. We wrote separately for a while, then read aloud to each other. Her insight improved my post. We promised to keep writing and meet again next month.

The Romance of Route 62

Two years ago

There’s no news this week. Dr. Fathi is researching clinical trials that David might qualify to join. We continue to drive along the Charles River on Storrow Drive to Mass General every Monday and Thursday. I know every manhole cover along the scenic parkway.
His white blood cell count says it all. On October 6, David’s WBC count is a very low 2.2: only 2.6% are leukemic blasts. By October 26, the WBC count is 15.5: 65% are blasts. Likelihood of a cure: infinitesimal.

Late October 2016

          The stressful month-long anticipation approaching the second anniversary of Dr. Fathi's pronouncement, "infinitesimal", melts away and Jim and I enjoy two autumnal outings this week.

Hartford Temple

Wednesday, we go to the open house of the Hartford Connecticut Temple (The Church of Jesus Christ of Latter-day Saints). The drive west on the Mass Pike and Interstate 84 is glorious; trees of flame-orange, yellow, and red, dazzling in the bright sunlight; a new vista over every hill. After our tour we stop for lunch at the Elbow Room--an American Joint restaurant in West Hartford. The day is fine and the rooftop dining is open. Fondly we remember the many visits to R'els during the four years of her psychiatry residency here.

Route 1 last month, what next?

On Friday we take a central Massachusetts foliage trip. Rain threatens, but we press on. I’ve planned our trip: Massachusetts Route 62 all the way to its western terminus at Barre, east of the Quabbin Reservoir, in central Massachusetts. I’ve great affection for Route 62. It intersects our street just 3 miles north of our house. In the road atlas it wends its way through small towns and countryside. The actual experience is enchanting. Each town has a white-steepled church along one side of a neatly-kept common.

October in Central Massachusetts

At Barre we walk into the folksy Colonel Isaac Barre Gift Shop. Wooden signs with whimsical sayings,

My favorite saying in the Barre gift shop

home decorating items, candles, knick-knacks, and old books. A wall-size historical map of Barre illustrates the mansions of prosperous, nineteenth-century Barre. We chat with the shopkeeper, who loves the small-town living. In the back of the store garments wrapped in plastic hang on a long rack. She explains: the shop used to be a dry cleaners. Now she accept clothes during the day and a van takes them to the next town every evening. Sometimes a customer comes in after the pick up, but before the driver has left town. The shopkeeper takes the clothes and puts them in the back of the van. There are apartments above the shop and sometimes someone will call her: the cell phone coverage is spotty and he needs to get a message to his wife at home. She runs upstairs with the message. Mayberry R.F.D. right here in New England.

Our last stop is Petersham. Another white church, another town green with granite war memorials.  We wander into the Memorial Library, another throwback to an earlier era. Behind the circulation desk is a huge marble slab honoring its citizen-soldiers of the Civil War. Across the green is a small monument, marking where Shays' Rebellion (1786-1787) ended.

Shays' Rebellion plaque in Petersham

I've only seen these signs in New England

          We wander north and drive back on Route 2, stopping at a roadside farm stand in Concord for a pumpkin and some local apples.

Total distance: 143.3 miles. Total driving time: 4 hours, 4 minutes.

That evening I see 'James Madison', in frock coat and wig, discuss the contentious political climate around 1800, not unlike today. Much as I love the Broadway musical Hamilton, I realize Lin-Manuel doesn’t do him justice. Madison, an articulate, genteel, and refined Virginian gently chides us for the rough, even rude character of the citizens of Massachusetts. But he graciously spends the evening enlightening our minds.

Ambushed by Grief

Two years ago

            Jim, David, and I sit in a small windowless room.Dr. Fathi says there is no known treatment likely to cure the leukemia: David’s chances of survival are “infinitesimal”. He speaks of keeping patients alive for a certain event: a child’s graduation or a wedding, for example.

A few days later David sends an email to our families:

            “You should probably sit down again. My doctor concludes that my chances of recovering from leukemia are extremely low. I probably have on the order of a few months left to live. I am unsure what to think of this. I definitely haven't been overwhelmed by negative thoughts at this news, which is good.
I love you all
David”

Mid-October 2016

Disclaimer: I want to emphasize that what I write here is not the majority of my experience. 95% of the time I function well. I laugh; I learn; I enjoy beauty. I go for walks; I brush my teeth. The grief attacks are short-lived, but brutal.

I walk down the sidewalk, away from my writing coach's apartment, enjoying the perfectly blue October sky, sunshine on my hair and face. In the sky to the north, I hear the faint beat of helicopter blades. In a quarter of a microsecond, several memories flood in. Last week, as I researched for my blog post, I had watched a YouTube video of a short section of Mr. Holland’s Opus. As Mr. Holland describes Beethoven’s experience as a deaf composer to his music appreciation class, the second movement of Beethoven's 7th Symphony  plays on the phonograph. Mr. Holland is silently processing the recent news that his own young son is deaf and will never be able to hear music.
          In the last few seconds of this YouTube selection, the sound of beating helicopter blades is heard. I know the movie well: the beats segue into scenes of the raging Vietnam war and then the military funeral of a former student. I hadn’t thought about this scene for years. Since then, I’ve been in a cemetery with a flag-draped coffin. Two cemeteries. Three coffins: my Navy veteran mom in 2013, my Navy veteran dad in 2014, and of course David in 2015. I’ve heard taps, played in a rain-soaked cemetery in December, wafting through a September fog; I’ve watched earnest young men in uniform fold the coffin-sized flag. I’ve been handed a flag for safekeeping by an earnest Army sergeant, so moved he couldn’t express himself.

So, here I am in Arlington, ambushed by grief. Again.

Well of Grief, Revisited

Two years ago

              I know it's very bad news when Faye, the office manager at Cox Clinic, calls to schedule an echocardiogram for David. The only reason they would need to know the health of his heart (which was damaged last March with the chemo drug, daunorubicin), would be if the latest treatment has failed. His low EJ (ejection fraction: a measurement of heart function) might disqualify him for a clinical trial. And you only go to a phase one clinical trial if the conventional treatments have failed.

              The bone marrow biopsy of October 6^th reveals that 16% of the white blood cells are leukemic. So, the maddening waiting of last week, when 'nothing' happened, is over. Jim, David, and I will meet with Dr. Fathi, the leukemia doctor on Wednesday, October 15.

Columbus Day Weekend 2016

              Saturday we hold a successful second annual blood drive in memory of David. Over fifty people come.

              I spend several hours on Friday, baking cupcakes and conference cookies for the donors. They are a big hit, especially among the bloodmobile staff. Out of the five dozen I baked, we return home with just two.

              Sunday morning I wake up with a headache and general achiness. Is it an illness? Is it a somatic reaction to grief, triggered by the blood drive? Does it matter?

              Am I grieving right? I know there’s no 'right' way, but I can’t even tell if I’m grieving. I guess by definition I am; I’m living through a loss, a loss that those who are experiencing it say you never get over.

              What does that mean, to get over? I’ll always be a mother who lost a son. The latest trigger, just this morning: Jim copies me on an email he sends to an old friend, who wasn’t able to make it to our August open house for Annie and Shawn and Sam and Savannah. He writes, “The open house went well. It came at the end of a week when all five children were with us…” The ‘all five’ stops me cold. I have resolved to continue to tell people I have six children (and then mix it up if they ask where they all are, so that it’s not obvious I’m only getting to five). Over the course of our August week together I am often reminded that five is the maximum number of children possibly present.

I revisit David Whyte’s poem, “The Well of Grief”:

Those who will not slip beneath

the still surface on the well of grief

turning downward through its black water

to the place we cannot breathe

will never know the source from which we drink,

the secret water, cold and clear,

not find in the darkness glimmering

the small round coins

thrown by those who wished for something else

              I was greatly touched by it when I first read it, exactly a year ago this month. When I search for it in my blog posts, I see that as I pondered it, I listened to Leonard Slatkin conducting Samuel Barber’s Adagio for Strings. Today I listen again, as I write, reaching for that sacred place where feelings are raw and real.

              I feel Whyte’s poem so much deeper than a year ago. Then, it spoke to my heart, without words, but I didn’t know how to turn downward through the water, more importantly, didn’t know if I wanted to deliberately swim down. Would I go so deep that I couldn’t get back up to the surface to breathe?

              And what are those coins he speaks of? I only guessed, a year ago. Now I feel like I understand better. I've come to the painful realization, over this past year, that I had never really understood people who were grieving. I'm pained by my lack of empathy. Now I've entered the club who throw small round coins down wells.

              This grief is a journey. And much like a drive on a rambling road through New England woods, I can only see a few yards beyond me. I can look at someone else’s map and imagine what lies ahead, but I can’t know until I am on the road, tomorrow, a month from now, five years from now.

              Jim and I watch a Doc Martin TV show. There’s a scene where Bert, usually flip and cocky, experiences great sorrow. He sits in his truck at the side of a country lane, weeping quietly. That’s how I feel.

              And now, YouTube has automatically started a a different, somber piece, Tomas Albinoni’s Adagio. Music opens the heart. When the Albinoni finishes, I search for Beethoven’s second movement of the Eroica Symphony, the Funeral March. And what about the Beethoven Mr. Holland plays to his music class while processing the deafness of his son? Second movement of Beethoven’s 7^th. The tears flow. I don’t need a map for today; I’m right here.

Happy Birthday, David

Two years ago

              My therapist, also a David, points out that my answer to his question, “What’s happening?” (“Nothing”) is great news after the roller coaster of the past six months. But the waiting is exhausting. The bone marrow biopsy after the high-dose cytarabine chemo shows persistent leukemic cells, but Dr. Chen is optimistic that Sam’s lymphocytes (white blood cells), harvested in August and infused on September 11th, will attack the leukemic cells. We wait and see.

              David celebrates his birthday by making a lemon meringue pie to share at the clinic. The nurses ask, “Oh, did you do something special for your birthday?” His answer is non-committal. Not much excitement in his present life.

Early October 2016

              I’m a day late with my blog. My project of simultaneously blogging our story from two years ago and the present day reality is harder than I anticipated. Looking back on our struggles to keep hope alive, looking back with the knowledge that nothing will stop the freight train that is David’s death; facing those memories is daunting.

              Instead of working on my blog yesterday, I spend over two hours briskly walking the Minuteman bike path to Davis Square, where I meet with my excellent psychiatric nurse practitioner. I've scheduled my semi-annual visits for April and October, giving me two easy opportunities for long walks. It's cold and threatens rain, but my body soon warms up and I'm glad I left my windbreaker at home. After the appointment, I eschew the convenient public transit T and walk home in a bright and sunny,  quintessential New England fall day. Five hours in total, 16 ½ miles. As for the blog, truthfully, I have had all week to work on it; yesterday was just the final day of a week of procrastination.

              Yesterday was either David’s 29^th birthday or the day to remember that he’ll never turn 29. Was it a 'good' day? What does that even mean? I don't cry much; I'm grateful for the thoughtful emails we receive. I meditate on my walk, then listen to podcasts. In the evening we have a video-conference call with our children for our monthly family book group. Afterwards Jim and I do some family accounting. Nothing special, just everyday life, tinged with sorrow.