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.

Easter

Two years ago

April 2015 was rough. I was still reeling from the devastating disappointment of the decitabine failing, when David started a clinical trial of the experimental drug CPI-0610. Yeah, so experimental they hadn’t even given it a proper name. We spent the first day of the trial in the clinic for 8 hours: 4 EKGs and 8 blood draws.

CPI-0610 was so new the manufacturer was only making it in 25 mg pills, so David had to swallow 12 large capsules each morning.

On Sunday, April 26, we all went to dinner at the Bements. David played with little Eli; he was always very gentle and relaxed around young children. Eli loved him; they developed quite a rapport.

Easter 2017

What with our trip to Italy and getting ready for Patriots’ Day (we park between 40 and 60 cars on our acre lot, I bake six large breakfast casseroles, and we host a breakfast for all comers (usually between 100 and 150 people)), I didn’t take time to think much about Easter. The Easter program at church was lovely; I sang in the choir. Sixteen-year-old Bella, a young woman who moved here from Brazil with her family a year ago, gave a sweet talk.

The Friday after Easter, I happened upon a journal entry I wrote a year ago. At the time, I was in great pain. And then a well-meaning friend greeted me on Easter Sunday: “Oh, Mary, this must be the happiest Easter for you, knowing that David will be resurrected.” No, it wasn’t; it just plain hurt. Badly.

So this year, without planning it consciously, I let Easter slip away without much fanfare. I’m not in deep anguish, but I don’t feel like celebrating. I trust that next year I’ll have healed even more. For now, I’ll accept that the past two Easters has been hard holy days.

The Enchanted April

Two years ago

In March and April, David’s health remained stable as he started a new clinical trial. Jim and I had hoped to take a Midwest road trip with him, since he couldn't fly with his low (nigh non-existent) immune system. But he couldn’t even stay away from the clinic for more than 5 days, so we flew to Chicago and spent the week with Charlotte and Matt, while, Annie flew to Boston and took a shorter road trip with David to NYC to visit R’el, Peter, Xiomara, and sweet 3-year-old Andrew.

Matt was working for Wabash College in central Indiana and planned to move there, so we looked at apartments with him, then drove to Columbus, Indiana. Jim’s first real job after his MBA was in the finance department at Cummins Engine Company. We moved there when R’el was a week old and left four years later, 7 weeks before Matt was born. In between, our Hoosier baby, Peter, was born.

It was wonderful to see our old friends, including R’els and Peter’s babysitter, Loretta. In those energetic days, I would strap Peter to my front and wheel R’el in the stroller to Loretta’s house, then walk to the Boys and Girls Club for lap swimming.

Enchanted April 2017

We’re not forgetting David, but I’m sure he’d want us to experience life and not dwell in debilitating grief. It’s hard not to feel guilty enjoying things he can’t enjoy, but that doesn’t make a lot of sense. When I die I will want my loved ones to appreciate and enjoy the life they have still to live.

Jim and I have been planning for a year to go to Italy with Jim’s brother, Jeff, and his wife, Nelly. Because Nelly’s school vacation conflicted with our Patriots’ Day plans, we flew to Florence six days before they did, then spent five days together. Then we flew home while they took a train to the Italian coast.

I felt like I’d fallen into the movie (and book) Enchanted April (based on the book, The Enchanted April, by Elizabeth von Arnim). I highly recommend both. It’s set in a medieval Italian castle, not Florence, but wisteria blooming in April connects their story and ours. Lottie and Rose dream of Italy while enduring a cold and rainy March in London; we looked forward to Italy as it snowed April 1st in New England. We all dreamed of wisteria: that flowering vine that spills over tall walls, delicate sprays of fragrant lavender blooms shaped like airy clusters of grapes.

Our time in Florence was like a honeymoon. (Maybe I’ll tell you more sometime about our real honeymoon. It was definitely shoestring.) I’ll leave the descriptions of the Duomo and Uffizzi to the myriad excellent guidebooks; everything they say is true.

Jim found our lodging on AirBNB several months ago. It was perfect: an efficiency apartment on the top floor of a building of apartments and two small hotels. Overlooking a courtyard, it was quiet and peaceful.

During the day, the front door was propped open. As we walked down the four flights of stairs (there was an elevator, but I took the stairs often to burn off some of the calories of all those gelatos and lasagnas), we became aware of a dull roar, gradually increasing until we stepped out into a bustling river of pedestrians, flowing in both directions from morning until late at night. Three blocks north was the Cathedral of Santa Maria del Fiore (the Duomo),

 six blocks south was the Palazzo Vecchio (Old Palace), built in 1299 and still the seat of local government, with the mayor’s office and the City Council.


I’ve never really understood the love of Italy: my people are from northern Europe: Germany and England and Ireland. But Florence disarmed me. The sunshine, the food (have I mentioned gelato?), the art and architecture. At first I was disoriented, confusing north and south and uncertain of my way. But by the end I walked with confidence in the neighborhood, surrounded by over two thousand years of history.

Gelato

I have two goals while in Italy, besides the obvious ones of enjoying our vacation (I am quite capable of having a miserable time in a beautiful place) and absorbing the sights and sounds and culture of Florence and Venice. The goals are to eat gelato every day and not to gain weight. Those may seem contradictory, but so far they’ve been complementary. I’ve thoroughly enjoyed each of my meals and knowing that I have a gelato in store helps me eat sparingly. And I love the tiny spoons the shops provide; they help me savor every small bite.

One of my fond memories of visiting Florence in 2001 with our six kids (then aged 10 to 20), was eating gelato frequently. It’s easy to do: in the tourist areas there are gelaterias in all directions. I’m not a connoisseur, but I enjoy the intense flavor and creamy texture.

There’s also a wonderful visual feast at many of the gelatarias. The gelato is presented in glass cases next to the sidewalk: creamy swirled mountains of brilliant red, yellow, orange, cream: strawberry, cherry, raspberry, mango, orange, lemon, coconut, hazelnut, and caramel. I eschew the blue raspberry and cotton candy ones.

By the second day I had failed in my goal: We arrived Monday and I had cherry gelato, but Tuesday I took my eye off the ball and didn’t think about it until after 11 p.m.: they had all closed. I learned my lesson! I ate gelato twice on Saturday, since we usually don’t buy things on Sunday, our Sabbath. Monday and Tuesday I was back on track.

We’ve attended concerts nearly every night. Opera soloists, and on Saturday night, a wonderfully skilled violinist play Vivaldi’s Four Seasons with a chamber orchestra. Jim and I realized with a shock that we had never heard it played live. It makes a huge difference. For years we had a cassette recording which included a poem in Italian at the end. Turns out Vivaldi's work is based on an Italian poem. Who knew?

Monday night (concerts usually start around 9 p.m.) we heard a young orchestra play a Romance by Sibelius and Mozart’s Symfonia Concertante for violin and viola. The violinist struck us as looking very Renaissance-Italian. He was a powerful leader of the piece. The concert concluded with Mozart’s Symphony 40, which I played in the Arlington Philharmonic once.

Afterwards, on our stroll back to the apartment, we stopped in Piazza della Repubblica to listen to a singing guitarist. We’ve seen him three times now. He sings very romantic Italian songs. Last Monday a young crowd had gathered on the piazza and there was dancing. Every day last week the crowds were mostly young adults; we think it must have been university spring break. This night the crowd was small and older.