Respite Then, Respite Now

Two years ago

On September 19, 2014, Jim and I drive to Perrysburg, Ohio, south of Toledo, in one day: a twelve-hour drive. Jim’s cousin, Bryan, marries his fiancée in her parents’ backyard. It’s a lovely wedding, and a chance to catch up with Jim’s aunt and uncle and some cousins. The trip provides a welcome respite from the routine at home of carefully preparing food, bleaching dishes, and driving into Boston for clinic visits at least twice a week. David stays home: several friends are on call to help him if needed. I walk to the historic downtown from our motel; it's a charming riverfront town which once was a ship-building center and a busy port, before Great Lakes ships became too large to navigate the Maumee River.
On the way home we stop in Northumberland, Pennsylvania, where I was born and spent my childhood until age nine. Across the Susquehanna River is Sunbury, where my older brothers and I attended St. Michael’s school. Jim and I stay overnight in the Edison Hotel in Sunbury. Back in 1883, Thomas Edison oversaw the building of a power plant there, and on the Fourth of July, he threw the switch to light up the entrance of the City Hotel (now named for Edison), while residents cheered and a brass band played.
The Edison Hotel hasn’t been updated much since 1883. In my overactive imagination I conjure up fantastic midnight disaster scenarios, so I carefully check the lock on the door and hope the other guests and desk clerk are trustworthy. The mattress is saggy, but I’m glad to say I’ve stayed at the Edison Hotel, after those childhood years of driving by the facade.

Early fall 2016

Jim and I spend six days fulfilling my longtime dream of driving all of US Route 1. In January we drove south to Key West and slept on a sailboat in the harbor. This week we travel northward, from Boston to Fort Kent, Maine. (I’ll fill in more travel details later this week.) July, August, and September were intensely painful, anticipating and then living through the first anniversaries, especially of David’s death (August 12) and burial (September 12). Although we had planned the northern road trip months ago, before these emotionally trying months reared their heads, the timing is perfect. I take off my grieving mother mantel and thoroughly enjoy driving through New Hampshire and Maine, with two short jaunts into New Brunswick, Canada.

Northbound on US Route 1

Last winter Jim accompanied me to fulfill the first part of a long-time dream: driving the length of US Route 1, which goes from Fort Kent, Maine, on the northern border with Canada, to Key West, Florida, the southernmost town in the Continental United States, 90 miles from Cuba.
See Route 1, Day Eight: Key West!

Tonight we’re in Wells, Maine. We left home at 1:20 p.m., drove down Storrow Drive to the Mass Pike, got on Route 1/I-93 and headed north. We stopped in Portsmouth, New Hampshire, for dinner: Jim got some restaurant suggestions from a friend who lives there. From the restaurant deck we could see The Strategic Harmony, a freighter from Singapore. After dinner we walked down the street for a closer look. Two huge cranes were unloading…sand from Chile. Unexpected.

Before we got to the restaurant we found a coffee shop/used book store, browsed for a while and bought about seven books. We’re incorrigible book buyers.

As dusk fell we bought gas in York, Maine and Jim worked his internet magic. First night’s stay: Coast Village Inn, a modest motel with a good deal on Expedia.

Some Dates Are Forever Changed

Two Years Ago

August 25, 2014. David is admitted to the MGH leukemia unit, for high-dose cytarabine. He receives 2 grams of the chemo drug every 12 hours for 6 days. At that high a dose, there is a risk of cerebellum damage: loss of fine motor movement, balance, and the ability to walk and control posture. I’m torn between the hope of a cure and the terror of the dangers. My son might never be able to walk again. For four days he is very sick, unable to eat, and just lies in a fetal position on the bed.

September 3, 2014. David insists on leaving the hospital. The nurse practitioner urges him to stay. With his extremely low immunity, she wants him in the hospital with immediate access to IV antibiotics. She is confident he’ll be back, stating that cleanliness won’t abate the greatest threat: bacteria in his own gut.
I beam with pride as I follow David; he strides out of the unit, determined to live his own life and go home.

I write in my blog that day:

            For my part, I thoroughly cleaned the house. It may not matter much, but it is the one thing I have control of. Annie told me of a very difficult time on her Taiwan mission. Everything was hard. So, she stood by her air conditioning thermostat and switched it on and off. On and off. She could control that: on and off. For me it’s cleaning and food safety. I can do that.

Two Years Later

We have observed David’s death anniversary, August 12, visiting his gravesite and then peacefully working on our computers in Jim’s air conditioned office, with an amusing distraction from a skunk trying to take up residence under our kitchen porch.

Now, in early September, I find myself occasionally doubled over in emotional pain when I’m alone. Every time I listen to “It’s Quiet Uptown”, a song of intense grief in the musical Hamilton,  I have to sit down and sob. Once I start to cry just hearing the opening bars of the musical.
It’s not all dreariness. To an observer I’m sure I look normal; I’m high functioning; I laugh; I enjoy things. But my identity as a grieving mother lurks just below the surface, even a year later. It always will.

All through September the anniversary of David’s burial, a year ago on September 12, looms large for me. We had expected the UMass Medical School to keep David’s body for many months, up to two years, and were stunned and unprepared when we received a phone call on August 31, saying that they had finished the research and were ready to return his body. Arranging a burial date and choosing a coffin was very hard.


This year, on Monday, September 12, I spend the day alone, puttering around the house, dusting and sweeping, photographing Peter and Xiomara’s car for their eBay sale, practicing the piano for the first time in nearly two months, and writing. As with the death anniversary, the actual day is less painful than the anticipation, but plenty painful nonetheless.

Tender Memories and a Twofer Open House

Two Years Ago: Mid-August 2014

Still reeling from the August 12th news of the failure of David’s stem cell transplant, on which all our hopes had been pinned, we travel to a rental house on the Long Island Sound in Clinton, Connecticut for our annual “Summer Retreat” week with our children. Although David is neutropenic, with practically no immune system, it is safe for him to ride in the car and stay inside at the rental house.

In midweek Jim, David, and I drive back to MGH in Boston for a medical appointment. Sam tags along to visit with his longtime friend, Kyle. He comes in with us briefly to use the MGH internet network: the internet at our rental house is unreliable. Dr. Chen, the transplant doctor, sticks his head in. He’s surprised to see Sam, who lives in Utah, and says that there is a possible treatment, “donor lymphocyte infusion”. Similar to the original stem cell transplant, part of Sam’s blood will be harvested, but to collect white blood cells (lymphocytes) this time, not stem cells. Three units are harvested and frozen. After the proposed cytarabine chemo, when David’s own white cell count (including the leukemic ones) is at its lowest point, Sam’s lymphocytes will be infused into David, with the hope that they will identify the leukemic cells as foreign and kill them.

2016
My laptop’s screensaver is a slide show: when the computer is idle for one minute, the display shows all my photos, in random order. I enjoy watching them pass before my eyes. In fact, it’s tempting to stop working right now, long enough to start up the show.

One of my favorite photos is of David sitting on the floor at our Connecticut rental house. Andrew is in front of him and David is playing the doting uncle, though a little skeptical of Andrew’s sincerity. David is so present, so in the moment with his one-year-old nephew.
And David looks good. His beard is full, his frame no longer skeletal, his wry smile, well, wry. He’s gained 30 pounds from his low, though he’s still light at 6’1” and 170 lbs. Jim’s in the background, working on his laptop.

I’ve avoided working on this blog post for the past three weeks. August 2014 was an incredibly painful time after five months of intense stress. Dr. Fathi put David’s situation in dire terms. “If you were an older man, we’d be done now,” he says after David’s stem cell transplant failed. “But since you’re young, we can try some things”: toxic, maximum-strength, conventional chemotherapy and possibly clinical trials, if his heart damage doesn’t disqualify him.

And now, two years later, the painful realization that August 12, which was burned into my memory then, as an important date in the ongoing narrative, will now also be the yearly observance of the end of his mortal story.

I had anticipated with a mixture of joy and dread our 'Summer Retreat' this year. It would fall so soon after his first death anniversary, and awaken bittersweet memories of his last reunion. Then he had a minimal immune system and was quarantined. But he was alive and there was hope.

At the end of our Summer Retreat 2016 we hold a double open house. Sam and Savannah (Savam) were married last year, June 2, in the Bountiful Temple in Utah, when David was sick, unable to travel, and not expected to survive. I worried that David would die on their wedding day. Of course we didn’t plan an open house at our house that August. Instead of an open house, we held visiting hours at our home on August 16, just before David’s funeral at our church. There was no viewing; his body was at the U-Mass Medical School about to become a subject in a research project.

Annie and Shawn (Annli Shawston) were married June 10 of this year. With our leukemic son no longer alive,  we plan a summer party for both couples, a twofer.

It's a wonderful evening. For the first time, the ultra-thrifty (cheap, penny-pinching?) Johnstons hire a caterer. Xiomara arranges summery bouquets; R’el takes pictures. The weather invites us to spill out onto the deck to enjoy the perfect New England evening. The caterers turn the ‘fruit and cheese platter’ into a multi-level fruit and cheese creation, complete with cascading Concord grapes. A bright spot in a month of tender memories, a chance to share the joy of our newly married children with old friends.