Boots Among the Pine Needles

Two years ago

On Thursday, July 30, 2015, David was discharged from Lunder 10 at Mass. General, his last in-patient experience. Because he was a 27-year-old young adult and therefore an atypical hospice patient, (hospice, like leukemia, is overwhelmingly an old person’s experience), Good Shepherd Hospice accepted David as a patient while he continued active treatment at MGH to keep the leukemia at bay, receiving blood transfusions and continuing to take the chemo drug, hydroxyurea. I planned to continue driving him to Cox Clinic twice a week, though actually, we only went there two more times. The Lunder 10 discharge was scheduled for 11 a.m., but in true hospital-time fashion, we weren’t cleared to go until 4 p.m. Meanwhile, the hospice nurse, Luis, and a social worker, Robert, waited in our driveway until their shift ended. They went home and later in the evening a night nurse visited and we took delivery on some IV morphine cassettes.

A few days before David was discharged, my friends, Sarah and Birgit, helped me thoroughly clean the dining room in anticipation of David’s homecoming. A medical supply company delivered a hospital bed, tray table, oxygen concentrator, portable oxygen tanks, and a suction machine (to clear throat secretions. Gratefully, I never had to use it.) Moving the dining room chairs to the basement and replacing them with the medical equipment, and taking the leaves out of our antique oak table to convert it for sickroom duty, all made his imminent death more real, though nothing could really prepare us.

David appreciated not having to climb up and down stairs: the microwave and drink supplies were now in the next room. Our couch was just on the other side of his bed, so he could come in and watch a movie with us. I don’t remember if he ever did.

I spent at least three hours studying the procedure for giving David sterile dextrose water by IV. I read and re-read the instructions, made myself a spreadsheet with detailed and thorough, step-by-step instructions, reviewed and edited it over and over again. And still I was nervous every time I did it.

R’el brought two-year-old Andrew up from NYC for a four-day visit. Xiomara was due to have their baby any day, so she and Peter had to stay close to home. David enjoyed seeing his curly-haired nephew and Andrew reciprocated by being sweet and adorable.

David spent the rest of his time napping and reading The Economist magazine and Woman Warrior by Maxine Hong Kingston, our family book group selection. He did live long enough for the discussion, but didn't talk much or maybe not at all; because of his terrible throat pain he avoided talking.

And so we quietly prepared for the inevitable.

8 August 2017

Jim and I are at Zion’s Camp in Raymond, New Hampshire. Originally owned by the Boy Scouts, our church bought it about 15 years ago and converted it into a regional Young Women’s Camp. With a waterfront on the shores of Lake Onway (having spent many years as a Girls’ Camp waterfront director, I appreciate a well-appointed boathouse and swimming area), a large dining room with a commercial-grade kitchen, both rustic and electrified cabins, an archery range with girl-size bows, and a rifle range with girl-sized rifles, it’s much different from my Girls’ Camp experience in Sharon, Vermont, thirty years ago, where we camped in tents, cooked over fires, and did crafts beneath large blue tarps in the rain.

I haven’t been camping in years, and it is bringing back fond memories of hiking in the woods, roasting marshmallows over a campfire, and swimming in lakes or the ocean.

As I walk through the woods and look down at my old sneakers, a vivid memory of my old hiking boots comes to mind.

On November 5, 1995, I went psychotically manic. I was extremely paranoid and agitated. My whole personality changed: Jim didn’t recognize me and asked some friends to take me to their house, away from our children. After some time in the local emergency room, I was transferred by ambulance to a locked psychiatric unit at Waltham Hospital (more on this in future posts).

By summer, I had weathered an intense bout of bipolar depression. R’els Young Women’s leader invited me along to help on a two-day canoeing trip down the Saco River in New Hampshire. I was thrilled.

We rented canoes in the White Mountains and paddled all day, setting up camp along the river in the evening. After supper, I walked into the woods alone. As I breathed the pine-fresh air, I watched my boots crunching the long, bronze pine needles in the dry, sandy soil. I smiled. I was back. Back from the dead, practically. Back in the land of the living, watching my brown hiking boots tramp among the pine tree roots.

"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.

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.

Decitabine Failure

Two Years Ago

On March 19, 2015, exactly one year after David called me from Korea to say he had leukemia, decitabine, the gentle chemo drug that was keeping the white blood cell counts down, stopped working, dramatically. His counts doubled in three days. So, he went back on hydroxyurea, that old workhorse of a drug, which doesn’t cure leukemia but temporarily keeps the bloodstream cell count down and symptoms at bay.

March 19, 2017

I’ve been putting off writing this blog post. When I finally got down to work today, I realized that not only was Sunday, March 19, the third anniversary of David’s phone call, it was the second anniversary of the keen disappointment of decitabine failing. I've had this experience before: I struggle to sit down and write a blog post. Once I finally get started, I find that some significant and painful setback occurred exactly two years before. It surprises me every time, though my sub-conscious seems acutely aware of it, or why would I avoid writing?

On Sunday, my friend Carri drove me to our church meeting in Cambridge. “How are you doing, Mary?” I have a hard time identifying how I'm doing. I function well; I'm busy and happy. But always there, just below the surface, is the knowledge that David is dead. Yes, I believe he continues as a distinct personality in the spirit world. Yes, I believe I'll see him again, healthy and perfect in body and mind. But mortality feels very long. He still isn't living a normal young adult life. He still isn't going to come home for a visit or make the summer retreat, when our family will spend a week together in August. It's sad; it just is.

Advent

Two years ago

Jim, David, and I drive to New Jersey for my dad’s funeral. I plan to stay on with my siblings to start emptying the house my parents lived in for 29 years. After Jim and David leave, I realize that all of my belongings are still in the trunk of the car: my laptop, my clothes, my wallet, even my psych meds. Lucky for me Maggie’s husband John is a doctor. We go to Walgreens and he writes me a prescription to tide me over till I get back home. I spend the week wearing my dad’s purple shirt, cargo pants, and a belt.
         The packing up is bittersweet. We fill box after box of Mom's books. When we think we've packed up the last of them I open a cupboard in the attic and call down, "More books!" Murder mysteries I'm sure she hadn't read for fifty years.

On December 10th, David’s WBC count is the lowest of the past two months: 3.84. The hydroxyurea, that old workhorse of a drug, brought the count down from 95 to under 4 in just 7 days.
        David wants us to have our traditional Advent suppers. Since 1998, we've invited old friends each of the four Sundays before Christmas. David becomes a little girl magnet. Two sweet five-year-olds snuggle close to him as we gather in the family room to read Christmas scriptures and sing carols.

Advent 2016

I struggle to prepare for Advent each week this year. My friend Cami comes over after she puts her one-year-old down for her afternoon nap and we set the tables together.
The Compassionate Friends, a support group for bereaved parents, grandparents, and siblings, holds its annual candle-lighting on Sunday, December 11th. I invite my family, far and near, to light a candle for an hour at 7 p.m. local time. In New York, our sweet little granddaughter immediately blows it out.

Maple Butter candle for David

Jim lights ours: a two-wick scented candle in a jar. I sit in a wooden chair next to the couch where David sat last year with those adoring little girls. I can’t sing the first few carols: my throat constricts. But I'm prepared: I have a dish towel to catch the tears.

(If you lit a candle for David, leave me a comment, please.)

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.

Quiet Saturday at Home

            Well, the actual discharge time from Lunder 1024 on Thursday was 4 p.m., five hours past the 11 a.m. stated departure time. While we waited at the hospital, David’s new hospice nurse, Luis, was waiting in our driveway along with the social worker, Robert. Their shifts ended, so they went home before we arrived at our house. Martin, the night nurse, came instead, and around 9 p.m. a driver from Pelham Pharmacy dropped off the IV-morphine cassettes.

            Luis and Robert returned Friday morning. Luis watched me set up the one liter bag of dextrose water to David’s IV line. I was pretty nervous; it went well, slow but well. The infusion nurse who trained me at Lunder on Thursday, gave me a ‘cheat sheet’ with step-by-step instructions, which I used. I assured Luis I could do the disconnection when the four-hour infusion was complete.

            This morning the weekend nurse, Lisa, arrived at 1 p.m. to walk me through the set-up. I had spent over an hour typing the instructions into a spreadsheet to help me understand the steps and rehearse them in my mind. The actual set-up went well, but I asked Lisa to come by Sunday just to bolster my confidence and refine my technique. After she left I spent more time fine-tuning my spreadsheet, printing it, and putting it in a sheet protector. (I love sheet protectors.)

            Flash back to Monday (or was it Tuesday?), which feels like two weeks ago: my friends Sarah and Birgit came over and helped me dust and sweep the house, and prepare the dining room for the delivery of the hospital bed and equipment. The old oak table that I grew up with has removable leaves; we took them out and changed the rectangular table with seating for 12 to a small square table. All the leaves and the dining room chairs made their way down to the basement for safe keeping.

Wednesday we took delivery on the hospital bed, tray table, oxygen concentrator, portable oxygen tanks, and a suction machine (to clear throat secretions). Thursday we arrived home around 5 p.m.

            Turning the dining room into David’s bedroom, complete with hospital bed and all the trimmings, makes hospice very much more real. It’s sobering. He appreciates not having to climb the stairs to his bedroom each evening. He can go to the kitchen to microwave warm milk or sit on the couch in the family room and watch a movie with us.

            R’el was able to take Thursday and Friday off and brought two-year-old Andrew up from the Bronx for a four-day visit. Andrew is a brave little soldier and has handled his first overnight away from home and his parents with aplomb. Andrew’s mom Xiomara is nine months pregnant, so she and Peter have to stay at home close to the hospital until after the baby is born. David enjoys seeing his curly-haired nephew. Matt flew in late Friday night; he’ll stay till Monday.

            It’s been a quiet day. David still has a cough, and has very little energy, but he’s home and fairly comfortable. He’s reading Woman Warrior by Maxine Hong Kingston (our current family book group selection) and The ubiquitous Economist.

            Thus ends Day Two of hospice.

Discharged from Lunder 1024

We’re at Lunder 1024. David is resting, I am on my laptop (obviously). We’re waiting for the infusion person to come and set up David’s morphine pump in preparation for his discharge, which was scheduled for 11 a.m. It’s 1:53 p.m. now. ‘Hospital time’ is the mode of the day.

            During this past hospitalization a new plan went into effect. We changed to Good Shepherd Hospice. Since David’s is an unusual case, being 27 years old rather than 70 or 80 or 90, they will allow him to keep receiving active treatment at Cox to keep the leukemia at bay. Mostly that means platelets to avoid uncontrollable bleeding and hydroxyurea, which slows the growth of the leukemic white blood cells. So, we’ll continue the twice-weekly appointments, just like we’ve had for most of the past 14 months. It’s become a familiar drill: blood draw, complete blood count, including percentage blasts (the leukemic cells) and absolute neutrophils (the infection-fighting white blood cells; David’s counts has been zero for months.), possibly transfusions of platelets and red blood cells, then a converation and check-up with either Dr. Fathi or one of the nurse practioners, Judy Foster or Meghan Bergeron.

            Our hope is that David can hold on until Annie returns from China on August 10. Through the miracle of technology she is able to video-call David and will do that in the interim. Of course, as has been the case for over a year, we can’t predict from day-to-day what will happen. That’s true for all of us, really, but the probability of death is much higher for David.

            I feel calm at the moment. I’m a little nervous about training on all the treatments. As I learned from a social worker back in December, when David’s white blood cell count rose to an alarming 95, hospice is not what most people picture: 90% of the care is done by the family care-givers. The hospice personnel are on call 24/7 by phone and in an emergency can talk us through whatever we need to do until the triage nurse arrives, which should be within an hour, but the immediate crisis, if it comes, will be ours to deal with initially. I’ve had eight months to digest that information; I’m as ready as I can be.

Home again, home again, jiggetty jog.