Blithely Passing Gas Stations

Two years ago, day thirteen

Our sister-in-law, Michelle and her two youngest: Brigham and Charlie, visit June 29th. David lived with them, in Wayne, PA, a suburb of Philly, when he volunteered for City Year, before his mission. We really appreciate them coming for one last visit before the big move to Washington State. We sit on our deck, soaking in the perfect New England evening.

2016
We spend the Johnston family reunion with Jim’s family, including Michelle, Brig, and Charlie. I stay the next week to visit two nieces, a Hazen cousin, and a cousin of my dad, (my first cousin, once removed, if you’re genealogically-minded).

Sunday, June 26th, after church and lunch, I head for Moscow, Idaho, to stay with Jenn’s sister Michelle, her husband, Will, and little 20-month-old Chloe (a.k.a. Clover.) It’s an inspiring drive over the evergreen Cascade Mountains and then 100 miles of desert: sage brush and the occasional stand of sage-colored trees. Taking Washington State Route 26 eastbound, I pass, in blissful ignorance, a gas station at mile 2 and spend mile 50 through 102 wondering if AAA works in the wilds of central Washington. There's a sign for gasoline around mile 50, but it states the hours: Monday through Saturday. I imagine pulling in and sleeping in the car till Monday morning. Around mile 102, I spot a white minivan with a young mother tending her infant at a primitive rest stop (No water, just two outhouses). “Do you live around here?” “Well, in Pullman.” “Is there a gas station open anywhere near?” “Yes, in Colfax, if you have a credit or debit card." When I pull into it, I’ve still got a quarter tankful of gas, but I’m relieved to fill it up. Colfax, Washington is just 25 miles from Moscow, Idaho, but I'm taking no more chances.

Reminds me of our 1995 cross-country trip. (15,900 miles, 48 states, 1 Mexican state, and 3 Canadian provinces). In South Dakota I blithely pass a gas station; I still have several gallons of gas in the car. We drive through miles of sparsely populated reservation and I, silently stressing, try not to convey my ever-increasing anxiety to my six children (ages 4-14). Am I going to strand us all in the wilderness? I finally give up, turn the minivan and tent trailer around, backtrack, and roll into that same gas station, practically on fumes. East Coast assumptions can get you in trouble in the West.

Boring Days Then, Evergreen State Now

Two Years Ago

Starting June 17, the day after David’s stem cell transplant, I drive him to Cox, the outpatient leukemia clinic, twice a week. Each time, they draw blood, count his white and red blood cells, and his platelets (which have clotting agents to stop bleeding), and measure his blood level of tacrolimus, an immunosuppressive drug given to prevent David’s residual immune system from attacking Sam’s stem cells. At home, David injects himself with neupogen to boost those stem cells’ production.

2016
I spend a lovely two days with Kathleen in Ballard, Washington, which was originally an independent town (much like Hyde Park, south of Chicago). Now it’s northwestern Seattle. It has a charming downtown and we lunch at an excellent Mexican restaurant. I buy bandaids for my chin.

Thursday, June 16th, I pick up Peter, Xiomara, Andrew, and little Victoria, at the SEA-TAC airport and head for the rental vacation house on Lake Sawyer in Black Diamond. Friday we visit the Museum of Glass in Tacoma and tour the Seattle Underground on Saturday. There are some cloudy days, but that’s what we expect in the Northwest, right? We take turns cooking for 26: I ambitiously plan to make a Cook's Illustrated chicken parmesan recipe; it goes well. Since I cut my chin in Sacramento, I don’t swim in the lake.

After the reunion, Jim goes back to work in Lexington while I stay in Sammamish to visit relatives. I head back to Tacoma to see my niece, Jenn, where we visit a playground, for her two boys, and then a sandwich shop for lunch. Nine-year-old Paxton blows me away with his knowledge of the Revolutionary War. He even knows about the Fortification of Dorchester Heights, when Henry Knox dragged 60 tons of cannons and other guns from Ticonderoga over 200 miles to Dorchester Heights, overlooking the Boston Harbor and the occupying British army and navy.

        Friday, June 24th, after walking David's and Michelle's dog, Bo, I head for the eastern shore of Lake Sammamish and walk 13.82 miles in 4 hours and 8 minutes. My half-marathon (13.1 miles) time was 3:55.

Stem Cell Transplant Then

Two Years Ago

Sam flies back to Utah the day after David’s transplant, after we have watched the anticlimactic delivery of his stem cells via IV to David. Sam has a job for the summer with a small startup company. R’el graduates from her psychiatry residency at the University of Connecticut Medical Center in Farmington, just west of Hartford. We attend a wedding reception for Ryan and Mie at the Old Manse, which Nathaniel Hawthorne and his new bride Sophia Amelia Peabody rented when they were first married in 1842.

Day One, Day Two, Day Three of the hundred day post-transplant quarantine. I become a “Kitchen Nazi”. I decline offers of meals from loving friends. I focus a lot of energy on keeping the kitchen clean and the food safe, measuring the temperature of all meat (even cold cuts) and cooked food (165° or above), soaking the washed dishes in bleach, and spraying down the kitchen counters with a bleach solution frequently. It’s what I can do to combat the helplessness.

2016

The wedding of Annie and Shawn, which I announced in last week’s post, happens in the Provo City Center Temple. My wedding hope for them is expressed by the letter Nathaniel Hawthorne wrote to his sister Louisa, shortly after he and Sophia married:

“We are as happy as people can be, without making themselves ridiculous, and might be even happier; but, as a matter of taste, we choose to stop short at this point.” A year later, Nathaniel writes to his wife, Sophia, “We were never so happy as now—never such wide capacity for happiness, yet overflowing with all that the day and every moment brings to us. Methinks this birth-day of our married life is like a cape, which we have now doubled and find a more infinite ocean of love stretching out before us.”

Two days after Annie’s and Shawn’s wedding Jim drops me off at the Salt Lake City Amtrak train tracks at 10 p.m. I wander around, looking for the promised waiting area, and finally stop in at the Greyhound bus station, where a security guard directs me to the small Amtrak waiting room.

The California Zephyr is two hours late. At 2 a.m. I board and settle into my seat, which is a lot roomier than economy airplane seats. No one sits next to me, so I can spread out a little. I sleep about five hours, waking up several times. When I wake up the sun is well up; my sleep mask is very effective. A group of Mennonites are behind me in the coach car; they speak a language that sounds Scandinavian. At Winnemucca, Nevada, I have time to step out on the platform; a Mennonite woman and man run to the end of the long, concrete platform. The conductor is annoyed, thinking they will delay the train. Nearly half the passengers on the platform smoke. Back on the train many of the passengers sleep through the stop. I spend several hours in the observation car and hear the story of the ill-fated Donner party as we pass Donner Lake in the Sierra Nevada Mountains.

We arrive in Sacramento, California, around 4:30 p.m., about two hours late. I cut across a parking lot to get to Old Sacramento. I trip over a parking berm and cut my chin and scrape my knees—blood everywhere. Dazed, I stumble into a restaurant and a helpful bartender  rescues me with a bunch of paper napkins to staunch the bleeding. I wander the wooden sidewalks, past shops of old-time photographers, ice cream shops and tattoo parlors, and a riverboat dock, all the while firmly pressing the napkins to my chin. The man at the hot dog storefront notices my plight and offers two small bandaids. Then I walk to the California state capitol and enjoy the botanical garden.

At 1 a.m. I board the Seattle-bound Coast Starlight.

Next morning I head to the observation car at 7:00 a.m. I spend the day typing on my laptop and listening to a naturalist and a historian narrate our trip through Oregon and Washington. We stop on a siding in front of a bog and watch yellow-headed blackbirds dart among the rushes as a freight train passes us. Crater Lake is too far away to see, but there is fresh snow on the evergreens as we pass over the Cascade Mountains, which is delightful.

We arrive in Seattle an hour early and I take my first Uber ride, to my college friend’s, Kathleen’s, house. We talk late into the evening, as the room slowly darkens; we bask in our renewed friendship in the dusk, which lingers past 10 p.m.

Wedding Plans

Our daughter Annie is getting married tomorrow in the Provo City Center Temple in Utah.

            In December 2010, a fire destroyed all but the outer walls of the historic Provo Tabernacle.




The temple was constructed inside those walls and dedicated on March 20, 2016. Annie and Shawn will be married there less than three months later.                            

Jim’s cousin, Mark, and his wife, Lynne, are generously hosting us and helping tremendously with the preparations and reception, which will be at the Springville Art Museum. Cyrus Dallin, who sculpted the Angel Moroni on the main steeple of the Salt Lake City Temple as well as Appeal to the Great Spirit in front of the Boston Museum of Fine Art, was born and raised in Springville, Utah, south of Salt Lake City. Dallin spent his adult life in Arlington, MA, where he had a sculpture studio. We live about 4 miles away, both from his studio and the replica Angel Moroni statue on the Boston Temple.

Two years ago

The first week in June, 2014, our son Sam, a 10-out-of-10 HLA (Human Leukocyte Antigen) match and therefore David’s stem cell donor, takes a few days off work in Utah and spends them at Mass. General as they harvest stem cells. The procedure is much like a platelet donation: Sam sits quietly while a needle in a vein in his arm removes his whole blood. A machine separates out the stem cells (which can mature into any type of blood cell), and then Sam’s blood, sans stem cells, is returned into a vein in his other arm. They freeze the cells, to preserve them before the transplant. After the procedure, we meet for lunch at the food court at Mass. General.

The results of an echocardiogram explain why David walks slowly and bent over: he has the heart of an 80-year-old cardiology patient: the chemo drug, daunirubicin, damaged his heart badly. In addition, he could have died from the C-diff (clostridium difficile) infection he contracted in the hospital. As it was, he had emergency surgery to remove his large intestine. Clearly hospitals are dangerous places for him.

So, when his transplant doctor, Dr. Yi-Bin Chen, asks David if he’d like to go home the day after the transplant, of course David lights up. After my initial elation, I’m more subdued: coming right home feel like the booby prize. They won’t administer radiation or more chemo to eradicate most of the leukemic cells before the transplant, as is the standard procedure. That treatment might just kill him. And since he won’t be badly weakened by any additional chemo and radiation, he can immediately go home, a much safer place than the hospital has been for him. There are no easy decisions.

Memorial Days

Memorial Day Weekend 2016
We spend four days in Charleston, South Carolina, visiting Jim’s sister’s family (John and Mary, Sierra and Jenna) and taking in the Spoleto USA Music Festival while getting to know Charleston with its charming 'single houses' with side porch piazzas, its bay views, and its picturesque streets.



The first landmark driving into Charleston is the airport exit sign, which reminds us both that the last time we saw David healthy was when we dropped him off at said airport on January 2, 2014, after a post-Christmas visit to John and Mary. At the curb Jim signed David’s copy of the Family Letters 2006-2011 book Jim wrote. Just a prosaic airport drop-off. David was headed back to Fort Hood Army Base in Texas. I didn’t know I was supposed to watch him carefully, soak in that last bit of Army -Medic health.
We soak up three days of concerts and theater in downtown Charleston: modern dance, chamber music, orchestra, choir, and The Importance of Being Earnest. Monday we walk about a mile to a Westminster Choir concert at the Cathedral of St. Luke and St. Paul. On the way back to downtown it rains and I walk under a large colorful umbrella. Stopped at a traffic light, a man taps my arm and points down at the puddley sidewalk. A small American flag on a stick lies abandoned on the ground. I don’t know if he thinks I had carelessly dropped it, but out of respect I pick it up: my private Memorial Day observance. I hadn’t planned ahead to decorate David’s grave, but that evening our Bishop emails a picture of his thoughtful observance:

Memorial Day Weekend 2014
Four days after I pack my carry-on bag and camp out in David’s hospital room, we're medevacked to Hanscom Airport near Boston (and four miles from our house). After the excitement of the leukemia remission news and the dramatic airlift, we discover that the doctors at MGH (Massachusetts General Hospital) have no intention of doing anything over the Memorial Day weekend. It's a let-down.
But the important thing is that David is home and on his way towards a bone marrow transplant.

Five Springs 2014

May 24, 2016

Yes, many days are easier than six months ago or even three months ago. Matt runs his 27th marathon in New Paltz, NY. Peter also runs a marathon; R’el and Xiomara run half marathons; I walk a half. Jim lets the little ones sleep in (race starts at 6:00 a.m.), then brings them to the fairground.
The race organizers are conservative in their course marking: the course is well over the required 26.219 miles. My Runkeeper GPS registers 14.23 miles. Is there such a thing as an ultra-half marathon?
I sleep well that night, but feel low the next morning. It’s another first: a family gathering for a marathon race with no possibility of David joining in.

Five Springs 2014

2014 is the year of five springs. Leaving Lexington with its bare trees of March, we drive into the warm spring of Maryland. One evening I walk for miles among the pink clouds of cherry blossoms, which ring the Washington Monument, line the Tidal Basin, and surround the Jefferson Monument.
In mid-April I return to Lexington to prepare for Patriots Day, throwing me back into early spring, with the trees just beginning to bud. Then we fly to Utah, somewhere in between Maryland and Massachusetts in the springtime calendar.
My early May half marathon along the Susquehanna River in Danville, PA has the trees in full leaf and lilacs blooming. May 5th I’m back in Bethesda with azaleas in pink and red and white. I enjoy moving among these springtimes.
Five springs, and David experiences none of them, stuck in a hospital room for nine and a half weeks, experiencing appendicitis and an appendectomy, two rounds of harsh chemo, retinal bleeding, esophageal pain, slurred speech, an infected colon and colostomy, and 30 pounds of weight loss. He transforms from a healthy Army medic to a thin leukemia patient.

On Monday, May 19, 2014, I drive our black Hyundai to Steve’s and Maria’s house. From March 26 to May 19 I commute daily to Walter Reed in that car, but that evening I do laundry, pack all my clothes, and walk back to Walter Reed, determined not to leave the hospital until David and I are medevaced to Massachusetts. I am told that the plane might leave without me and that if I am allowed on board I can only take a purse with me. I go into survival mode, afraid they will leave without me. I hardly leave the fifth floor, sleeping on the pull-out couch in David’s room.

One night we walk down the corridor with his wheeled IV stand to a family lounge. He sits on the green vinyl couch and I return to his room for his pillow. The night nurse finds us and looks nervous: it's obviously against regulations to let a leukemia patient with low immunity sleep in the lounge. She kindly lets him sleep and I promise to stay awake and keep watch over him. What a simple pleasure, to nap on a green vinyl couch: the first sleep in nine weeks out of his hospital bed.

Hospital Life, Two Years Ago

May 16, 2016
Outside my home office window the maple trees and flowering quinces are leafing out and the sun is shining. I plan to walk to my piano lesson three miles away. Today is going to be a good day.

One day last week, I pulled a disinfecting wipe out of the plastic cylindrical package. The scent yanks me into the past, caring for David, wiping down surfaces, bleaching dishes.

May 7-20, 2014

With all he has been through in the past 8 weeks, David retains his deep compassion. An inexperienced student removes his nose tube a few days after surgery. I quickly look away as I see David’s eyes open wider than I thought anatomically possible. As soon as it’s over, David asks the student: “Was that your first time?” The student rather sheepishly admits it is. “It didn’t hurt at all. It was weird, but it didn’t hurt.”

Drinking a glass of water as Dr. Mo talks with him, David asks, “Do you know how good a glass of water tastes?” Such gratitude and serenity as he savors each sip.

I walk the deserted indoor courtyard of Walter Reed’s outpatient building, cell phone pressed to my ear, crying my fears to Jim. Jim responses, “It’s sad; it doesn’t have to be scary.” That becomes my mantra.

  Three vials of cerebrospinal fluid are removed via lumbar puncture, to determine whether or not the leukemia has spread to the fluid. I didn't know white blood cells could do that. It's an anxious twenty-four hours, but the next day’s results show no leukemia in the fluid. In addition, the most recent bone marrow biopsy shows remission; the transplant can move ahead. We’ll be going home soon.

For the first time in seven weeks, David goes outside. I wheel him up to the hospital's 7th floor roof garden. Fresh air and sunshine. We stay about 10 minutes, sitting in the late afternoon shade of the building, surrounded by potted plants and trees. David soaks it in.

I am learning to interpret David’s slurred speech. I’ve become his voice: most of the medical staff can’t understand him. In the privacy of his room we hold hands, sometimes to comfort me, sometimes to comfort him. At his request I sleep two nights on the green vinyl couch in his room, awakened by the noisy 6 a.m. visit from the surgery team.

On May 17th a speech therapist visits. The exercises improve his speech a bit. Next day his speech is suddenly perfectly clear and the leg tremors are gone. David didn't practice that much; probably the Flagyl is finally out of his system. Unfortunately his vision is still impaired and reading, one of his favorite activities, is a chore. I stay overnight again. David appreciates it. It's a simple life, for both of us.