Three Julys

Two years ago

We continue to live day-to-day. David has severe throat pain and can't eat or drink anything but warm honey water, getting weaker daily.

Rockport 2017

Jim and I spent two days in Rockport on Cape Ann, (the other Cape), at a charming AirBNB. I had a ‘German Shepherd' hot dog at Top Dog (befitting the Hot Dog Queen of the East) and in the evening we heard David Deveau  in a piano trio concert.
Saturday we stopped in Gloucester for lunch at the Blackburn building, now housing the restaurant Halibut Point. Howard Blackburn was a Nova Scotian fisherman whose rowboat was separated from the main fishing vessel; he bailed and rowed for five days in the frigid open sea and survived by letting his fingers freeze in a curled position so he could keep rowing. Although he lost all his fingers and parts of both thumbs, years later he sailed solo across the Atlantic, twice (two times), setting time records.

Like the underground Lost River in Indiana, I can feel a quiet current of grief  beneath my day-to-day enjoyments. The memories of Julys past: 2014 with a cautiously tentative hope as we inched toward the 100-day mark after the stem cell transplant, 2015 as David got weaker and stopped eating, and 2016 with the anticipation of the first anniversary of his death.

Now, when I plan to work on my blog, the weight of those Julys make it difficult to start. So far I’ve been able to keep my pledge to blog every week. I appreciate you reading it.

"Our Look Over the Brink"

Two years ago

July 2nd, David woke at 7:00 a.m. coughing heavily, consistently bringing up small amounts of blood. When our friend who lives on the third floor went downstairs on her way to work, David asked her to get him help. She came up and knocked on our bedroom door. Jim went to talk with David, who was waiting for an ambulance. Jim rode with David to Mass General. David’s sense of humor shone through: when the paramedics transferred him to the emergency department hospital bed, he said, “The hospital certainly has nicer beds than you do.”
He had nearly constant coughing, with blood, then got an hour of relief. When the coughing started again, there was more blood than before. An ENT (ear, nose, and throat) doctor came and probed with a camera via his nostrils. The ENT doctor’s best guess became that the blood was coming from his lungs and was related to the two-month-old pneumonia. The next diagnostic step would be a bronchoscopy, with sedation and intubation to maintain the airway, hoping to locate the source of the bleeding.
About this time, Dr. Fathi, David’s main oncologist, came by. He gently suggested to Jim and David that a bronchoscopy was a possibly irreversible step toward being permanently intubated and in the intensive care unit until the end of life. David vetoed the bronchoscopy.
With the decision not to do the bronchoscopy, , David was allowed for the first time all day to drink. He said over and over how good the ginger ale tasted. Then he fell into a restful sleep sitting up in his hospital bed.

Later that afternoon, David was transferred to Room 2004 of Phillips House: MGH’s deluxe hospital accomodations, since Lunder 10, the leukemia unit, was full. Phillips feels like luxury condominiums, with beautiful dark woodwork and high-end wooden doors. Each tastefully appointed private room includes a flat-screen satellite TV, and they serve specially prepared meals. David’s room had a glorious view of Beacon Hill and downtown Boston.

Jim emailed our kids, with the subject line “Our Look over the Brink.” He chronicled David’s day: the end of David’s life felt very near. His pneumonia couldn’t be cured; he had internal bleeding; and the leukemia was barely being kept in check by increasingly high doses of hydroxyurea. He was also steadily losing weight.

From the start of his illness, 15 months earlier, David didn’t want to talk about death, pain, his feelings, or his wishes for his end-of-life. However, in the hospital, he talked to Jim about his funeral, saying that he wanted nobody to feel pressure to travel long distances for it. He said he was glad that his younger sister Annie had gone to China to study that summer and that he didn’t think she should come back for his funeral. He wasn't in denial; he had thought carefully about these things.

July 4, 2017

On the fourth of July this year, the founder of a RSS service (which compiles summaries of blogs) commented on my blog that his reviewers had named my blog one of the “top 50 leukemia blogs.” I googled the service: ‘Is this legit?’ Although I found a favorable PCmag review, I also found a Better Business Bureau rating of ‘F’ and numerous complaints about hijacking email contact lists and spamming invitations to join the service at $24 a year.
I clicked through and found my blog (which was truly listed as #10), but since I couldn’t read it without providing my email address, that's as far as I went: I’m not taking any chances. So, just so you know, according to one (perhaps shady) RSS website, I’m #10!

Continuing to browse the web, I googled Leukemia blogs. Mine did not come up. But the search brought back memories of David’s illness, with websites describing the types of leukemia, survival rates, and answering questions like, ‘What’s it like to have leukemia?’, ‘What do you die of?’ and describing‘What happens immediately after death.’ These aren’t pressing questions any more. I just wish the answers had been different.

Step Three

Two Years Ago

        On July 2nd, 2015, I read step 3 in the LDS version of the 12 steps:

“Decide to turn our will and our lives over to the care of God the Eternal Father, and His Son, Jesus Christ.”

Then I wrote in my journal:

I need to stop being “consumed with feelings of fear, discouragement, and despair.” It's going to be hard.


July 4th, 2017

Jim and I took a whirlwind trip, starting with a church youth conference in Palmyra, NY (site of the founding of the LDS church) on Thursday, a six-hour drive to NYC Friday afternoon, the Mormon Arts Center Festival at Riverside Church Friday evening and Saturday, a delightful supper at Kitchenette Uptown with our NYC kids and grandkids, and ending with the 4-hour drive home Saturday night.

I thoroughly enjoyed the trip and am thoroughly enjoying being home.

Last night, July 3rd, our evening walk turned into watching the excellent and entertaining town fireworks (always scheduled early so as not to conflict with the big Boston Pops concert and fireworks on the 4th). Afterwards we took the long way home to avoid the throngs on the sidewalks of Worthen Road.

July 2nd, I went with Jim to church at the Kendall Square stake center. While he attended the Spanish-speaking congregation, I went to the English-speaking Cambridge 2nd ward, since I only understand about 5% (generous estimate) of Spanish-language meetings. It was Fast and Testimony Meeting, when anyone in the congregation can stand at the pulpit and speak briefly. I spoke of manic depression and David’s illness and death. Afterwards, a young man approached me to say that he remembered David. He and another young man were in the University Ward with David, back in 2010. It was heart-warming to hear their memories of David. Most of their cohort have finished their schooling and moved away years ago. Even in our home ward, there are few left who ever knew David before he was a leukemia patient.

As I considered this, I emailed Peter’s wife, Xiomara, asking when she met David. She sent a sweet email, listing the many times she had been with David over the years. The first time was about eight or nine years ago, at R'els Brooklyn apartment. David had returned from his mission and he and Jim and I had driven down for a visit. Xiomara happened to visit R'el that same day.

        She has a very good memory; I appreciate it.

House of Mourning

Two years ago

     For Christmas R'el gave me a long weekend in New York City, where she lives. I bought a roundtrip ticket on a double-decker Megabus, reserving the top front seat, for $26. I spent six days in Manhattan with R'el; my sister Maggie flew in from southern California.

     We got half-price tickets to the Off-Broadway show STOMP after we didn’t win the ticket lottery for Wicked and headed downtown. Before the show we had hot dogs and tropical-fruit drinks at the Papaya King. (Maggie is the Hot Dog Queen of the West; I’m the Hot Dog Queen of the East. We prefer hot dogs to steak.)

     I clocked over 18,000 steps (6 miles and more) on each of three different days. The morning of Maggie’s return flight, she and I walked to Randall’s Island and to the top of the pedestrian bridge alongside I-278 that Matt had told us about, enjoying great views of the NYC skyline to the southwest and Long Island to the northeast.

Solstice 2017

I drove to New Jersey and New York, a circuit I used to do monthly when my dad was alive and before David got sick. Saw my brother Mike, who’s severely intellectually and physically disabled, and spent time with Peter, Xiomara, and grandkids Andrew and Victoria. They live 4 blocks from a great playground that has a big concrete sprinkler area for running around and getting wet. So, Wednesday I played Oma (German for Gramma) and bought the kids squirt guns and water sandals. Then we took the bus to the Bronx Zoo. Walking home from the bus stop, a cheery bike bell rang: it was Peter, coming home from work. When he heard about the shopping expedition he remarked, “I guess it’s true what they say about grandparents.” Yes, I was never a big spender with my own children. One of the perks of being an Oma: I don’t have to worry about feeding eight people and sending six of them to college.

On the drive home, I listened to a Freakonomics podcast. When that ended, I told the phone to open a podcast, and it randomly selected a Moth Radio Hour piece I had listened to previously and saved. The House of Mourning , is a true story, experienced and told by Kate Braestrup, a game warden chaplain in Maine. It’s about family members wanting to see and touch the dead bodies of their loved ones recovered after drownings or fatal accidents in the wilds of Maine. It’s all about the desire we have to tend to the bodies of our loved ones, as a final physical act of love. I started to sob, right there on I-84 north of Hartford, blinking to keep my eyes clear enough to see the road. We live onward, but that memory of the perspiration slowly evaporating off the scalp remains, and will always remain, with us.

Music and Tears

Two years ago

I attended our Arlington Ward Spring Sing, an annual tradition when the ward choir, small groups, and soloists come together and present an evening of light, entertaining music. Nearly every year since we moved into the ward in 1992 I’ve sung in the choir, but when David got sick I took a leave-of-absence. In March of 2015 I was in Bethesda full-time. When I got back home, I cried every time I tried to sing a  hymn, so I didn't rejoin choir.

At the Spring Sing, in 2015, I made the mistake of sitting in the front row of the chapel. I quietly wept through the entire program. Afterwards, I apologized to my friend and fellow alto, Kimberly. She said she just wished she could do something for me to ease the pain.

June 2017

I came back to the choir last fall. I’ve had a few tearful moments, when a lyric or a harmony would tug at my heart, but mostly I’ve just been normal. Two weeks ago, I agreed to be the chorister at Sacrament Meeting, standing in front of the congregation, directing the hymns. One or two catches of the throat, but mostly relaxed and confident, glad to share my talents again.

Gardening and Hand Bells

Two years ago

June 9, I drove David to Jamaica Plain campus of the Veterans Administration Healthcare System, about a 40-minute drive. I didn't know why we had to go into Boston; there’s a VA hospital 10 minutes away, in Bedford. But I braved Boston traffic, parked in the VA garage, and we waited patiently in a dark, drab corridor on the third floor of a large medical office building. When we finally went into the social worker, she also couldn’t understand why we were there; the excursion was a complete waste of time. At least the parking was free.

On June 11th, the blood tests showed that in just 3 days the percentage leukemic blasts in David’s bloodstream had risen from 79% to 89% and the white blood cell count had more than doubled, manifesting in his low energy level. We had a frank discussion with Dr. Fathi and a conversation with a hospital social worker about hospice.

I re-read Being Mortal: Medicine and What Matters in the End by Atul Gawande, an articulate and thoughtful Boston-based surgeon who discusses how current American medicine fails to realistically deal with end-of-life issues. I went into this new phase with eyes wide open, or so I thought. How does one prepare for the unimaginable.

Early June 2017

I opened the online newsletter of TCF (The Compassionate Friends), the club no one wants to join. Unexpectedly, I read his name, “David Johnston”: the newsletter had a list of August death anniversaries. As evening fell, I sat at my desk, listening to hand bell Youtube videos, writing and weeping in the gentle glow of my laptop.

Two years ago I did no gardening: I was paranoid about microorganisms in the soil. Last year I didn't have the ambition. I'm glad I didn't: I'm often inconsistent with watering and with the drought, any new plants would have shriveled and died. As it was, I almost lost my perennial rhubarb from my neglect. When I finally looked at them in August, they were languishing and limp. This year, after debating all spring, I bought tomatoes and basil and petunias. But it was cold and rainy while we were in Charleston; they hardly grew. My rhubarb, however, is glorious. I bottled 7 pints of cranberry rhubarb jam.

Another glorious thing in my life right now is hand bells. I mentioned this in February: a new friend of mine owns his grandmother’s hand bell set. She, Margaret Shurcliff, brought English hand bells to America in 1902. At this point, our intrepid little hand bell choir is really just messing about. That's a quote from a favorite book of mine, The Wind in the Willows: Rat asserts to Mole, "Believe me, my young friend, there is nothing — absolutely nothing — half so much worth doing as simply messing about in boats." I feel the same way about hand bells. The feeling of power, flicking my wrist and producing a huge ringing sound: there is nothing like it.

If you didn't watch it in February, check out Eui Gon Kim's solo. And Kevin Mazimas Ko, who plays six bells at once!

Start with Spoleto, end at a Motel 6

Two years ago

June 2nd, 2014, our youngest, Sam, and Savannah Eccles got married in the LDS temple in Bountiful, Utah. Back in Massachusetts, David was recovering from pneumonia in the hospital, but Matt took the train from Chicago to Boston and brought David home. Annie flew to Utah from Beijing; she was on a summer study abroad in Tianjin, China. The wedding was lovely and some of us spent the time between the ceremony and the wedding dinner at Nielsen's Frozen Custard stand.

When we returned home June 3rd, David was in a good mood, though weakened by the pneumonia. He was chagrined when Matt beat him at the board game “Ticket to Ride”. His throat pain and nausea were gone: probably they were caused by the clinical trial drugs.

Spoleto USA 2017

For the second year Jim and I drove down to Charleston, South Carolina, to attend concerts at the Spoleto USA Music Festival and again we stayed with Jim’s sister Mary and her husband John. Mary showed us some of the impressive memoirs she has helped produce. We visited John’s lab and observed barnacle larvae under a microscope. They are crustaceans; I didn’t know that. John is the world’s expert on sea turtle barnacles and always cheerfully answers any questions we have about the natural world in all its complexity.

We immersed ourselves in five days of 17-day festival: Mahler’s 4th Symphony, Tschaikovsky’s opera, Eugene Onegin, string quartets and piano trios. The most unusual show was "While I Have the Floor", a tap dancing memoir by Ayodele Casel. Like her, Jim and I love Fred Astaire and Ginger Rogers; like her, we’ve watched Top Hat and Swing Time dozens of times. Here's a sample of her thought-provoking show.

For our 38th anniversary, we stayed overnight at a Motel 6 in Roanoke Rapids, North Carolina, on our drive back home, reminiscent of the years when staying at a cheap motel was a big step up from camping or sleeping on relatives’ floors.