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.

Jellystone Park

The Hazen-Johnstons are having their annual Summer Retreat this week. We’ve just spent four days at Jellystone Park Camping Resort and will spend the remainder of the week at home with our children, spouses, and grandchildren.

Check back next week.

Ejection Fraction

Two Years Ago

Friday, August 15th, David has an echocardiogram (an ultrasound of the heart). His ejection fraction (EF), the percentage of blood that is ejected from the heart chamber at each heartbeat, is 43%. That’s an improvement from the end of May, but not the 58% expected in a 26-year-old Army medic. Daunorubicin, one of the very toxic chemo drugs David was given at Walter Reed, probably caused the heart damage. David’s been on heart medicine since his first echocardiogram at the end of May, when the EF was 36%. All spring he walked stooped over, like an 85-year-old heart patient.

            Dr. Amir Fathi, the 'leukemia doctor', spends a long time discussing David’s situation with the three of us. It’s very serious that the leukemia has returned. Because of David’s young age, Dr. Fathi will consider aggressive treatments and investigate clinical trials and see if David qualifies for any of them. The heart damage may disqualify him.

            Many months ago, before the leukemia, we rented a vacation house on the Long Island Sound, in Clinton, Connecticut, for our week-long Summer Retreat with our children (and grandchild!). We’ll drive there tomorrow. David can’t be out in public, but he can ride in a car and be with family in the house and yard.

August 12, 2016

For David’s first death anniversary Jim and I get up early and visit his grave. The grass has grown in and matches the color of the lawn; there's a freshly-dug grave nearby.

With temperatures forecast for the 90s, we close up our house against the heat, retreat into Jim’s office coachhouse, and turn the air conditioning on. During the day, five different friends bring flowers. In the afternoon my friend, Cami, helps me move David’s bed into the girls’ old room and reattach it as the top of a bunkbed. I set up a double bed in David’s room in preparation for our Summer Retreat next week. Although we’ve moved David’s bed, I will always call it ‘David’s room’. I’ve hung a photo of him on the wall: the portrait of him looking ‘extremely presentable’ at Peter’s and Xiomara’s wedding in 2011. Matt had it printed on glass as a gift to us; Annie held it for our family wedding pictures in June.

Oh, and just to make the day memorable, we discover a skunk sleeping under our kitchen porch. I leave the gate open and do internet research on skunks. According to the CDC (Centers for Disease Control and Prevention) they are one of the five "wild reservoirs of rabies", but this critter doesn't seem rabid. They rarely spray unless very frightened and cornered. Somewhat comforting, but what if this skunk didn't get the memo?
By nightfall the skunk has left. I move the extra recycling bins, the ones the skunk was napping behind, into the basement and hope the area doesn't become its den.

And thus begins our second year.

Blasts Are Back

Two Years Ago

               On Thursday, August 7, 2014, I post in my blog: it's Day 51 of the 100-day quarantine. That Sunday, Day 54, someone at church, (I'm grateful I don't remember who it was, so I harbor no ill will towards anyone specifically), tells me to cheer up: we're more than halfway through.

               On Tuesday, August 12th, the blood work looks good: the white blood cell count has risen from 2 to 3.7. But that evening the transplant doctor, Dr. Chen, phones after hours (always a bad sign). 30% of the cells are leukemic blasts. (Spoiler alert: exactly one year later, to the day, David will be dead.)

August 9, 2016

Dreary, slow morning. Mourning. I’m not conscious of thinking about David as I wake up. Even when I think, “oh, this is grief”, it’s diffuse. It seems like the flu, like a physical illness that has no emotional cause; it just is.
       Yesterday I added David’s obituary to FamilySearch, the online family history website, as well as his May 6, 2011 photo, taken at Peter’s and Xiomara’s NYC wedding, where he pronounced himself “extremely presentable”. When I get on my computer this morning, there’s his face, smiling directly at me. I have to close the file; he looks too alive.

Last evening someone asked me, “How are you doing?” I sense that she doesn’t really want an emotional weather report; she has major concerns of her own. But I decide to give voice to my feelings, or at least my situation. “Well, David’s death anniversary is this Friday.” She says she’s sorry, and I’m sure she is, but I feel awkward, revealing my wounds.

August 1st, I go to a Compassionate Friends support group. In July, just before David’s 11th monthiversary, I google grief support groups. When I see that they meet only once a month, I’m relieved: they won’t expect me to be ‘over it’ after the first year.

The small group is intimate and comforting. There’s a range of experience. (I won’t give specifics, since all that is said in the meeting is confidential, but suffice to say, there are parents who aren’t ‘over it’ years after the death and feel no shame in that. Really, how do you get over a life cut short?)
        I had read, in the grief literature the Good Shepherd Hospice has sent over the months, that there is a desire to speak the loved one’s name, tell his story. I haven’t felt the urge around other people, but it feels good to tell some of our story as a man across the wide table pushes the box of tissues across to me.

Today I take the T to Harvard Square and have lunch at Uno with my good friend, Anna. It’s only 90 degrees (it’s been a hot summer), so I walk home. Not a half marathon, but 9 miles. The bike path is primarily leafy and pleasant and I remember to bring a kitchen towel to wipe my face from time to time. Good honest sweat.

            Humorous postscript: I email my family to be sure and quote David accurately. Yes, he pronounced himself extremely presentable back in 2011. Matt writes: "While we're on the subject of funny things Dvu said, I believe he described the marrow biopsy as "the worst pain in America."  You had a blog entry last month  with it as "the worst pain in the world," which it may well have been, but David was not one to talk up his pain, yes? [ed. note: July 13, Eleven Months In]

            Point taken, Matt. Edit made.

Rollercoasters

Two Years Ago

We flew back home on July 30, 2014, from our Montana-Idaho trip.

From my blog:
It’s been a good trip and we are grateful David is doing well enough to be on his own. Thank you to our friends in Massachusetts for visiting him, taking the sacrament on Sundays, and driving him to doctors’ appointments.
And thank you to all our Western family who have expressed their love and support, and have kept us in their prayers.

Last of July, First of August, 2016

On July 22 I drive to the Good Shepherd Hospice in Newton, about 20 minutes away. Jaye, the grief counselor there, listens with empathy and gives wise counsel. Nine years ago her mother died,in her 50s. Jaye knows about grief first hand.
I pour out my heart to her and she listens. Then she gives me an analogy: the first year of grief is like a roller coaster ride in the dark. It can be scary, terrifying at times, but once you are on it there’s no getting off in the middle. You can’t see far ahead of you, you just have to endure it as it comes. During the second year, you’re on the same ride, but parts have a familiarity to them. From time to time the bottom may still drop out, but you’ve survived this ride before, so it’s easier the second time around. As the years pass, the roller coaster never goes completely away, but you may choose to get off for a while. A jarring experience or memory may unexpectedly pull you back onto it, as intense as ever, but later you can get off again.


Day-to-day I’m calm and I certainly manage. I’m certainly feeling an anticipatory dread as the days rise towards August 12th. Will it be as bad as I fear, the next drop? I’ll let you know in ten days.