Happy Birthday, Victoria!

Two years ago

Monday, August 3, 2015, David’s white blood cell count had risen from 1 to 8.29, concerning but still low. But the Thursday blood draw showed the counts had risen to 130. For an older person, that would be lethal. With a 27-year-old who had been Army-fit just 17 months ago, it was impossible to know how long he had, but I pressed Dr. Fathi: he told me he didn’t expect David to live more than a few days. People sometimes complain that doctors predict outcomes and are wrong; I was very grateful for his best guess.
Sam arrived Saturday from California; he hadn’t seen David since April. Matt had accepted a job offer at the admissions department of Clark University in Worcester, less than an hour away from us. So, he put most of his belongings in storage in Chicago and drove home, arriving Saturday afternoon.
Friday night Jim slept on the floor next to David’s bed; Saturday Sam slept on the couch nearby. David alternated between sleeping and lying quietly awake, reading The Economist magazine in snatches and sipping warmed honey water. For weeks he’d had throat pain; now he complained of hip pain, probably a result of lying still too long. Martin, the weekend hospice nurse, didn’t expect it to go away.
Annie arrived home from Beijing Monday night, August 9th.


David’s last days were sacred and intensely sad. I am so grateful we were able to provide a peaceful place for him to die.

August 12, 2017

Victoria was born 40 minutes after David died.  Approaching the second anniversary of David’s death, and Victoria’s second birthday, I was ready to make August 12th a celebration of Victoria’s life and October 4th (David’s birthday in 1987) a celebration of David’s. We plan to hold an annual blood drive for MGH in his memory on the second Saturday in October. (Let me know if you're available.)

Since Victoria’s birthday fell on a Saturday this year, we spent the day at the Bronx Zoo. We picked Matt up in Worcester and found street parking just outside the zoo. (It was because Xiomara was in the car: she's the parking space queen.) At the children’s zoo, Victoria proved fearless as she enthusiastically held out her hand to let the sheep and donkeys fed directly from her hand. A mother chided her six-year-old daughter, "See, that little girl isn’t afraid." I felt sorry for the older girl.

At a picnic table we ate Xiomara’s chicken salad, finishing off with some (very tasty and gourmet) vanilla cupcakes I made. Then we watched the sea lion feeding and show. By closing time I was tuckered out: I had only gotten 5 hours of sleep (anticipation insomnia).

The early evening was harder. We visited my younger brother, Mike, in a hospital in Paterson, New Jersey. A kidney infection had caused extremely low blood pressure (79 over 54).

Mike is severely intellectually disabled. As a child he learned to walk and talk, recite the alphabet, and feed and dress himself. But at age 13, his epilepsy got out of control and he went into a state of constant seizure. When he stabilized, he was never the same. For many years now, he has been wheelchair-bound and unable to speak or do most ADLs (activities of daily living).

It was hard to see Mike in a hospital bed with various tubes entering his body. I wonder what he thought, how he was handling the unfamiliar environment and strangers doing strange and sometimes painful things to him.

The visit brought back memories from May of 2014: while I was in Pennsylvania to walk a half-marathon and then visited my dad in New Jersey, David got a C-diff infection and almost died. The surgeons removed his bowels. When I returned to him in Bethesda, I was confronted with a horrible sight: my son unconscious in a SICU bed, his face smooth, beardless, and ghostly white, his body seemingly lifeless. Just two days before, I had visited Mike, who was in a hospital in New Jersey that same week. The impact of seeing first my little brother and then my son unconscious, with tubes in their bodies, and very sick, pained my heart. Would either of them recover? Would David ever be the same?
Except for his death, that was the lowest time in our 17-month experience with David’s leukemia.

When we returned home Saturday night, there was a bouquet of flowers on the porch from some thoughtful friends and a sympathy card in the mail. The next day another dear friend gave me a hug. I don’t need everyone to remember our loss: life moves on. But it feels good when one or two do.

I was glad the hospital visit was after Victoria’s birthday party. Sunday morning I woke up and cried, but I have experienced healing: I didn’t fall into a gaping chasm.

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.

Last Hospital Stay

Two years ago

Friday, July 24, 2015, David was admitted inpatient to Lunder 10 for belly pain. He was weak and thin: six feet tall and 135 pounds. Over the next eight days, I posted to my blog five times. Matt and I spent time with David in the hospital; Matt decided to postpone his return to Chicago; R’el called from NYC; Annie called from China. In the hospital, the doctors identified the source of the belly pain and with a simple, five-minute procedure the blockage was cleared. With the belly pain gone, David’s throat pain came back, full-force, so Matt and I slept in David’s hospital room overnight.

Meanwhile, Jim spent a few well-deserved days in Shelley and Blackfoot, Idaho, enjoying the fruits of a huge, two-year labor of love: the Alan and Mary Cannon Family Reunion. Alan and Mary Cannon were Jim’s mom’s parents. 168 people enjoyed the weekend, including our Sam and Savannah from California, Jim’s mom, aunts and uncles, and three generations of cousins.

Late July 2017

I’ve had much calmer emotional weather this week. Reading a few lines from Melissa Dalton-Bradford’s On Loss and Living Onward last week pulled me right back into the intense grief. But it didn’t last. I am in a much different place, a better place, than two years ago. The intense, double-over-in-pain attacks haven't happened for a while. When I cry, I feel really sad, but the feeling dissipates.

Re-reading the late July blog posts from two years ago is painful. So many hopes that died. For example, in the hospital, David had a clear, juice-like version of the protein drink Ensure. Desperately wanting him to get nourishment, we ordered a case of it online. By the time it arrived, the window of opportunity had closed: he never took a sip.

Today I walked 14 miles on the Minuteman Bike Path with my friend Susanne. The sky was blue and the trees lining the path the mature green of early August. In 25 days I’m going to walk the Mesa Falls Half Marathon in the Caribou-Targhee National Forest near Ashton, Idaho, not far from Yellowstone.There’s a coupon for a free huckleberry milkshake waiting for me at the finish line.

Mucositis

Two years ago

Another first: on July 21, 2015, David doesn’t walk into Cox Clinic; I park at the Fruit St. Garage and wheel him in on a borrowed wheelchair. (Thank you, Deb Butler!) He doesn’t bring his laptop, just the most recent issue of The Economist. He hasn’t eaten in several days (a ‘last time’ we didn’t notice: his last meal), just sips of warm milk and honey water. All day long he coughs about every 10 minutes and his throat pain is 8 out of 10. Dr. Fathi thinks the leukemia is causing the painful inflammation.

Second Half of July 2017

I spent some time with my old blogs this week, preparing this post. Two years ago, David had less than 3 weeks to live. We lived day-to-day, not knowing when he would die, how he would die, where he would die. Dr. Fathi warned me that final-stage leukemia could cause a patient to bleed to death. Would that happen as I drove him home from MGH on Storrow Drive? Would Annie make it home from Beijing before David died?

It’s painful to sort through the blog posts of the final three weeks. I weep, overcome by acute pain, trying to process those final days.

Yesterday I woke up to rain falling outside my bedroom window. Usually this is the hottest week of the summer, but the temperature was only 59 degrees. I decided to read the ‘living onward’ chapters in Melissa Dalton-Bradford’s book On Loss and Living Onward. Now that David’s death is almost two years ago, I thought I was ready to re-read her thoughts on the next phase. But as I glanced at a bookmarked page, comparing grief to the feeling of physical drowning, it all came rushing back, the wrenchingly intense sorrow. I turned to Jim and cried in his arms.

In my journal last November I asked myself, “what is the balance between acknowledging, accepting, and fully experiencing strong emotion and moving on? Is misery always self-imposed?” At this point, I’m living onward, functioning well, but right now, July 2017, the grief is close to the surface. I want to feel, want to acknowledge the loss, experience the grief, not pretend it’s not there. I've lost my son. That's not going away.

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.