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.

Memorial Day 2015 and 2017

Two Years Ago

On Memorial Day, May 25, David returned to Lunder 10. He hadn’t eaten anything for several days and was dehydrated and terribly nauseated. He had no appetite and severe pain in his throat. Dana, our favorite Lunder nurse, who works weekends and holidays, started IV saline and some Ativan, which is very effective for nausea as well as anxiety and insomnia. (I took it briefly during and after my psychiatric hospitalization in 1995). The Ativan knocked him out minutes after it started flowing into his vein.

The infusion room was full, so Dana had set us up in the patient and visitor lounge and taped a "Lounge Closed" sign on the door. It reminded me of May 2014, late in our time at Walter Reed. One night, after David had been there about two months, he couldn’t sleep. We walked down the hall to a lounge and he lay down on the couch. “This feels so good!” he said. The sweet nurse on duty let us stay, even though it was against procedure to have a leukemia patient with a minimal immune system sleep in the lounge. Such a simple pleasure, to get out of bed and nap on a green vinyl couch.

As Dana worked, she said, “I’m trying to keep him out of the emergency department.” She succeeded. Later that day he moved into room 1092.

The next morning, Dr. Fathi discontinued the MEK 162/BYL 719 clinical trial. The drugs weren't lowering the white blood cell count and were probably causing the throat pain, nausea, and lack of appetite. Another failed attempt.

Also on Tuesday, they took a chest x-ray to investigate his hoarse cough and discovered pneumonia. Later, a CT scan showed a large consolidation (not a good thing) in the upper right lung and little dots scattered throughout the lungs.

The previous Friday, R’el, Peter, Xiomara, and Andrew had driven up from NYC for the holiday weekend. Two-year-old Andrew had decided to enjoy his Uncle David’s company, even when his mother wasn’t in the room.

On Saturday, we watched a Captain America movie,Winter Soldier. R’el synchronized the start of the movie with Matt in Chicago and at our house R’el, Peter, and David sat at their laptops (as did Matt in Chicago) and messaged commentary as the movie progressed. David commented afterwards that he missed a bit of the action while typing and reading comments.

Memorial Day 2017

For the second year in a row, Jim and I drove to Charleston, South Carolina, to stay with Jim’s sister Mary and family and attend performances at Spoleto USA. Today we saw Geoff Nuttall and friends in a chamber music concert, including the Mendelssohn Piano Trio in C minor, opus 66.

I wrote about transformative music back in November. It’s an experience I have over and over again. The piano trio players performed with energy and passion. I’m grateful to share the earth with such talented, dedicated human beings.

Also, for the second year in a row, we didn’t visit David’s grave for Memorial Day: we drove to Charleston instead. I was at the cemetery a few weeks ago and straightened the flags flanking his headstone. The grass over his grave is lush and green; my lawn should look so good.

Happy Memorial Day

Right after David was buried, I thought I’d visit the cemetery once a week. It felt disloyal not to. But now I don’t feel the need to go so often, though with the warmer weather, I’ll probably make the 2 ¼ mile walk on the bike path more often.

Anniversaries in May

Two years ago

Because the current experimental drugs can cause eye damage, David has an appointment at the ophthalmologist. The office is about six blocks away from MGH and parking is non-existent, so I find myself pushing his wheelchair down the sidewalks of Boston. What a comical pair: a grey-haired woman pushing a grown man in a blue-and-chrome MGH-issue wheelchair.

David is severely anemic and has very little energy or appetite. On May 18th, he stops taking the hydroxyurea to start another cycle of the clinical trial of MEK 162/BYL 719.

Mid-May 2017

As I research my journal and blog for what was happening 2 years ago, 3 years ago hovers in the background. At first I think the reluctance to ‘get to work’is writer’s block or plain laziness. But, just as in March, with its third anniversary of learning of David’s illness and second anniversary of the failure of decitabine, May is fraught with significance. May 2014 was the darkest time of his early illness; he came very close to dying. By May 2015, we lived day-by-day, conscious that David’s life was drawing to a close.

Last week, Jim and I  drove south. We visited my younger brother, Mike, who is severely physically and intellectually disabled and lives in a group home in New Jersey. I pushed his wheelchair (another wheelchair) to a nearby garden center to buy tomato and pepper plants, basil, tomato cages, and a watering can. The garden plot in their backyard is tilled and fertilized and ready for plants.

        Besides seeing our NYC kids and grandkids, we spent several hours at the Metropolitan Museum of Art. (What do you think: does the Metropolitan Opera or Museum have a stronger claim to the moniker, “The MET”?). Among the many treasures, we saw "Washington Crossing the Delaware", which reminds us of the excellent David Hackett Fisher book, Washington's Crossing. 







         The painting is huge: 12 feet tall and 21 feet wide. The golden frame, a reproduction based on a photo by Matthew Brady, is over-the-top patriotic, with an eagle, stars, and flags and spears.

Driving home, we left Interstate 84 and roamed the Connecticut countryside.

         In Torrington, we discover the Ritz Café, a few booths and tables surrounded by a shop full of vintage clothes, hats, and jewelry, clocks and chandeliers. The clock-repairman waits tables in his spare time, maintaining the Torrington clockworks heritage.

Only a Matter of Time

Two years ago

May 9th David’s white blood cell count was 53.54 (very high), two days later it was down to 29.68, and by May 14, WBC was 6.92. Certainly the hydroxyurea was responsible for some of the drop, but we hoped the experimental drugs, MEK 162 and BYL 719, were contributing as well.

But, even if the drugs were keeping the white counts down, it was only a matter of time before nothing will work. On May 13th, to prepare myself, I walked around the block to the Douglass Funeral Home. I needed to know what a funeral would cost. A few days later, I went to DeVitos in Arlington. We’ve attended several viewings there over the years. They were a little cheaper (I’m always cost-comparing), but more importantly, I just felt an emotional connection.

Mothers’ Day 2017

Mothers’ Day was always problematic for my mom. I never discussed it with her, but I inherited an ambivalence towards it. At Compassionate Friends, Elizabeth mentioned that it can be a hard holiday. That hadn't occurred to me, at least not recently. I tried not to panic myself into a hard time.

Sunday evening we attended the Joseph Smith the Prophet oratorio by Rob Gardner. Our Cambridge Stake production had a 40 piece orchestra, with about 80 teenagers and adults in the chorus. The talent and testimony were energizing.

Next day we drove to New Jersey and then the Bronx, where I'm typing this now, well after midnight.

Still Processing

Two years ago

Monday, May 4, was a very long day at the clinic. David started a new clinical trial of two experimental drugs, MEK-162 and BYL-719. They had given good results on solid tumors; this study was to see if they would have a similar effect on leukemic cells.
Except for the day of the bone marrow biopsy and initial blood draws, David could stay on hydroxyurea, which had become his only defense against uncontrolled growth of the blood cancer.

Early May 2017

Spring is coming slowly this year. We’ve had a few days of hot, summery weather, but now it’s back to 50-60 during the day, 39 at night.

I went to Compassionate Friends last Monday evening. We were in Florence, Italy, last month, so I missed it. I arrived first, after the facilitators, Elizabeth and Chris. I recounted our trip: the perfect AirBNB Jim found, the architecture, art, food, gelato. Eventually three more parents arrived and the conversation wove around many everyday topics, including death and loss. Mostly I listened quietly.

I thought of my Florence report as ‘my turn’, but 15 minutes before the end, Elizabeth turned to me and said she wanted to give me time. I didn’t know what to say, didn't really know how I felt, but plunged in. The pain isn’t debilitating; I function perfectly well. When a smell or sound or sight awakens the grief around other people, I’m anxious to not break down and sob while wishing I knew how to express my sadness more openly.

        I’m shocked when I hear myself say, “It will be two years in August.” It’s been less than two years? How can that be?

The other night I listened to Krista Tippet’s podcast interview with Sheryl Sandberg and Adam Grant. Sheryl’s 47-year-old husband, Dave, (there’s that name), died while on vacation in 2015. Adam is a psychologist and close friend who has helped Sheryl and her children after Dave's sudden death. Sheryl and Adam have written a book and started a non-profit, Option B,  "to help people build resilence and find meaning in the face of adversity." One video on the website addresses ‘the elephant in the room’, how hard it is to talk about grief.

Sheryl has realized that people often say nothing in the face of grief because they fear reminding the grief-stricken friend of her loss. That's not possible: grief is timeless; it doesn't go away. Life goes on; joy returns; but it's always there as well.

        I listened to this podcast alone, then played it for Jim last night. Afterwards we sat quietly. It's good to just sit.

Yes, speaking David's name, acknowledging the grief, doesn’t make it worse. David would have turned 30 this year. That haunted me in January, I've grown used to the idea.

The grass grows green.

David Moment

Two Years Ago

April 2015 was a tough month. David contracted a staph infection in his blood and spent ten days back at Lunder in MGH. Because of the infection, they removed the port in his chest, that wonderful device that for the past year had allowed the nurses to draw blood twice a week (and at least daily when inpatient) and deliver transfusions easily. In its place, he got IV tubes that dangled out of his arm all of the time. But by April 28th, David was looking good. We had a whirlwind visit from Sam and his fiancée (now wife) Savannah and her sister, Emma. The next day David developed pain in his arm. Ultrasounds. Blood clots. Blood thinners. Platelets to combat the bleeding risk from the blood thinners. Then his WBC count doubled in two days, so he had to go back on the hydroxyurea and couldn’t start a new clinical trial.

End of April 2017

I feel so normal. It worries me; yet again I wonder, am I doing this grief thing right? The other day I opened a container of antiseptic wipes and the smell put me right back in 2015 and the incessant  bleaching, hand-washing, heating food to 165 degrees. But it didn’t cause a ‘grief attack’. Many months ago, when I was feeling grief as an attack, capable of doubling me over, my therapist gently quizzed me, “You think of it as an attack?”" Smelling the antiseptic, I realized I had re-framed: it was a ‘David moment’ for me, not a debilitating attack.