Easter

Two years ago

April 2015 was rough. I was still reeling from the devastating disappointment of the decitabine failing, when David started a clinical trial of the experimental drug CPI-0610. Yeah, so experimental they hadn’t even given it a proper name. We spent the first day of the trial in the clinic for 8 hours: 4 EKGs and 8 blood draws.

CPI-0610 was so new the manufacturer was only making it in 25 mg pills, so David had to swallow 12 large capsules each morning.

On Sunday, April 26, we all went to dinner at the Bements. David played with little Eli; he was always very gentle and relaxed around young children. Eli loved him; they developed quite a rapport.

Easter 2017

What with our trip to Italy and getting ready for Patriots’ Day (we park between 40 and 60 cars on our acre lot, I bake six large breakfast casseroles, and we host a breakfast for all comers (usually between 100 and 150 people)), I didn’t take time to think much about Easter. The Easter program at church was lovely; I sang in the choir. Sixteen-year-old Bella, a young woman who moved here from Brazil with her family a year ago, gave a sweet talk.

The Friday after Easter, I happened upon a journal entry I wrote a year ago. At the time, I was in great pain. And then a well-meaning friend greeted me on Easter Sunday: “Oh, Mary, this must be the happiest Easter for you, knowing that David will be resurrected.” No, it wasn’t; it just plain hurt. Badly.

So this year, without planning it consciously, I let Easter slip away without much fanfare. I’m not in deep anguish, but I don’t feel like celebrating. I trust that next year I’ll have healed even more. For now, I’ll accept that the past two Easters has been hard holy days.

Decitabine Revisited

Two Years Ago
March 2015

A few more thoughts about decitabine, which stopped working in mid-March 2015.

I knew something was terribly wrong when Faye, the receptionist at Mass General, called to schedule an echocardiogram for David. His heart had been badly damaged by the initial two rounds of chemo at Walter Reed, in the spring of 2014. Since then he hadn’t qualified for clinical trials because of his poor heart ejection fraction. The only possible reason for Dr. Fathi to request a new echocardiogram would be that the decitabine had stopped working and he hoped David would now qualify for a clinical trial.

In December of 2014, Sam emailed to report that the national “Be the Match Bone Marrow Registry” had contacted him. Long before David's leukemia, Sam had done the cheek swab at a booth on campus at Brigham Young University. Now he had been matched with a patient in need of a stem cell transplant. Sam wanted to help, but his first priority was David. If there was any chance David would need Sam’s stem cells, Sam didn’t want to jeopardize that.
I asked Dr. Chen and it came out that he had requested a search of the registry on David’s behalf. Sam showed up as a match, naturally. The only match, in fact. That’s when we learned that Dr. Fathi hoped the decitabine would bring David’s leukemia into remission. If that happened, they wanted to move quickly with a fresh stem cell transplant. Dr. Fathi said, “I don’t want to get your hopes up, but here I am, getting your hopes up.”

That was December. The decitabine continued to control David’s white blood cell count for three months, but when those counts started going up in mid-March, we knew it had only been working on the bloodstream cells, not the cancerous cells in the bone marrow factory.

So, as I said in last week’s post, March 19th is a doubly difficult day. In 2014 we learned David had leukemia. In 2015, we learned that the latest hope had been dashed. We all had hoped: our family, the doctors. It was a bitter disappointment.

End of March 2017

I’m enjoying the afterglow of my visit to Riverdale two weeks ago. We had a cozy snow day on Tuesday, March 14, and on Wednesday Andrew (nearly 4), Victoria (1 ½), and I spent the day together. The best moment was when Victoria returned from an afternoon doctor’s appointment. She came into the apartment and ran to me, arms outstretched, smiling. My heart sang.

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.

Ambiguity

Two Years Ago

For five days, Feb 23 through 27, David and I went to MGH every day for his fourth round of decitabine infusions. At the low dosage he received, decitabine is not technically a chemotherapy. Rather than kill leukemic blood cells (and healthy blood, hair, and gut cells as collateral damage), the hope is that it will reactivate the tumor suppression genes in individual cells.

Last day of February 2017

Jim and I had a stay-cation last week. Monday, we went to Springfield, in Central Massachusetts, to see James and Laneth Dick.  Back in New Jersey, circa 1977, James Dick was my bishop. Now they are on a six-month mission. We spent the afternoon together and had lunch at The Student Prince, an iconic German restaurant in downtown Springfield that opened its doors in 1935, and nearly closed in 2014. Jim discovered it years ago, when he had a client in the city. We've been there a few times, including once with R'el: that night I got the sampler platter of game meat.

Wednesday, we went to the Isabella Stewart Gardner Museum. For a new program, called “Up Close”, they installed a single painting, The Annunciation, by Piermatteo d’Amelia (15th century Italian), in a room by itself, with explanatory text on the wall. The piece is beautiful, and moving. In the far corner of the room, a flat screen TV played an 11-minute video: Bill Viola’s Emergence.

I found the video disturbing. An older and younger woman lean against a large marble box, filled with water. After several slow motion minutes of watching the grief-stricken women, a dark-haired head begins to emerge and the water starts to spill out over the edge. The younger woman looks up in amazement. The older woman finally feels the spilling water and looks up. Slowly a chalk-white motionless man with closed eyes rises out of the water, which continually flows out. The women gently pull him out of the water and lay him on the ground. The younger woman takes a long, flowing cloth, and lays it on top of the still, seemingly lifeless figure. She rests her head on his chest while the older woman cradles his head in her lap.

It bothered me, a lot, since it seemed focused on death, while The Annunciation depicts one of the most joyful events in history, the prophecy by the Angel Gabriel that Jesus will be born to Mary. On the wall behind the flat screen, a small print of a fresco, Cristo in Pieta by Masolino da Panicale depicts Mary and the Apostle John laying Jesus in a tomb. The box in Emergence is similar, and the Pieta was the initial inspiration to Viola.

Of course, subconsiously (why do I so often not recognize these things?) the images brought up memories of David’s last night, a year and a half ago. For days after watching that video, I felt a familiar, physical ache. It seemed so disconnected, unattached to thought, that I wondered if it was bipolar depression. Now I know it was not depression, because it didn't last.

Watching a YouTube video about the making of Emergence, I understand more of Bill Viola’s vision. He had seen the 15th-century fresco by Masolini, but didn't do anything with it immediately. When he did get back to the idea, he took the image, removed the historical context, and explored, through very slow motion photography, emotional aspects. As some Getty educational material suggests, “the emphasis becomes...the viewer’s individual response.” Over the past week, it certainly has evoked a response in me.

At first, I thought Viola was reworking Jesus’ story. But learning more, I gained more appreciation of his art. He seeks ambiguity: has the young man drowned or are the women midwives to a sort of birth? Is the water a deathtrap or life-sustaining amniotic fluid? How does this scene relate to the experience of the mother of Jesus and her grief the day of his death? Viola, for me, has achieved what every artist must strive for, a work that stays with me, that moves me to examine my experience in a new way and consider it in a larger context of the human experience.

Psalm 22

Two Years Ago

End of January 2015

David starts his second 5-day round of decitabine infusion. It’s a fairly gentle chemotherapy; his beard continues to grow and he looks good. Decitabine is slow-acting, so we wait and hope it is attacking the leukemia factory in the bone marrow.

Last week of January 2017

A few weeks ago I listened to a episode of On Being, with Krista Tippet, a podcast I subscribe to. She interviewed Eugene Peterson and discussed his book, The Message: The Bible in Contemporary Language. I was gut-wrenched by his Psalm 22. In the King James version, which I am very familiar with, the psalm begins:

My God, my God, why hast thou forsaken me?
Why art thou so far from helping me, and from the words of my roaring?

Peterson's translation:

God, God . . . my God!
Why did you dump me
miles from nowhere?
Doubled up with pain, I call to God
all the day long. No answer. Nothing.
I keep at it all night, tossing and turning.”

The emotion is raw and powerful.

Today’s the last day of the first month of 2017. After a rocky start, I decided to take it easy and start my New Year on February 2nd, Groundhog Day. (Bill Murray’s movie may be my all-time favorite, which is saying something from a woman who can't ever decide: peach? blueberry? strawberry? I want all of them!) That movie is deeply spiritual to me.

So what does it mean to me, to start my new year? I’ve spent a month thinking about what I do and what I want to do. I’m grappling with the big question: how do I choose what to do among so many good, wholesome, and worthwhile activities?

I think it will be a long-term project.

Your 'Why'

Two years ago
David’s white blood cell count continues to be low, though the percentage that are leukemic blasts goes up: from 5% to 16%. Every Monday and Thursday I take Storrow Drive to MGH for lab work while we wait to see if the decitabine therapy will work.

Mid-January 2017
Jim shows me a Michael Jr. video, where he explains that "when you know your ‘why’ you have options on what your ‘what’ can be." Watch this to hear “Amazing Grace” illustrate his point.

What’s your ‘why’ this month?

New Year, Week Two

Two years ago

On December 1, David began a round of decitabine chemotherapy. He had an infusion daily for five days, then a month off to let his blood counts recover.
Then, on January 2, David began a second round. He had some nausea and fatigue, but his red blood cell and platelet counts remained relatively stable. After the five days of infusion, he took three weeks off while his blood counts recovered.

New Year, Week Two

Friday afternoon, my therapist asked me for clarification: does the grief feel like an attack?
Yes, I feel ambushed. But what if I called them 'David moments', like Jim does? Grief hurts, but perhaps I can experience it differently.

Monday, I went to The Compassionate Friends meeting in Concord. Each person there has lost a son or daughter to death. It's a club no one wants to join. I told of my pain in trying to sing “Ring Out Wild Bells” the day before. Since my therapist's question on Friday, I’ve started re-framing. Yes, it’s the start of the second whole year without David. But it’s also the start of a new year of my life.

Matt spent the weekend with us before his big trip to Hawai'i with R'el. Now they've been in all 50 states. Next weekend they'll run a marathon on Maui: her third, his twenty-ninth. Unfortunately for him, his early Sunday flight was cancelled due to the big snowstorm on Saturday, however, we enjoyed his company for an extra day and a half. Monday morning we had a great discussion about anxiety and choice and enjoying life. Today both Jim and I feel differently about our day, more conscious of taking charge and making deliberate choices. I did little things: conquered the mare's nest of cords under our bed, laundered our clothes, played the piano.
I’m taking it slow: I made no dramatic resolution on January 1st, didn't promise myself to never miss a day of exercise or to read a book every two weeks. I'm gently considering how to live my life more fully. Can I appreciate the great gift of life I have?

No More Decitabine

                   Our optimism about the decitabine took a nosedive today. Although David went through the fourth round without hydroxyurea, today the white blood cell counts are up again: from 8.93 last Thursday to 18.39 on Monday and a whopping 46.07 today. Yes, we’re back to doubling in 3 days. He’ll take 2 gram/day of hydroxyurea again and discuss clinical trial options on Monday. The hydroxyurea can keep the white blood counts low in the short term, but since it doesn’t attack the leukemia factory in the bone marrow, it can’t cure the leukemia.

He had another echocardiogram today: his heart’s poor ejection fraction barred him from certain clinical trials back in August. We hope he has recovered sufficiently to be eligible for a trial now, since the conventional treatments have not been effective in achieving remission.

He also had a bone marrow biopsy today. It was originally scheduled to assess the effect of the decitabine, but based on the blood draws we can see it isn’t working at this point. The clinical trials require biopsies to assess eligibility, so Judy took extra samples for those. We’ll get the preliminary results on Monday, as well as the echocardiogram results.

Jim and I are planning a trip to the Midwest starting 28 March. Originally we envisioned a road trip so that David could come, but he can’t be away from MGH for more than 5 days, so we’ll fly, see Annie in Madison, and Matt and Charlotte in Chicago. If Matt can arrange his schedule, we’ll drive to Wabash College in Crawfordsville, northwest of Indianapolis, where Matt is an admissions officer.

Date of Blood Draw (CBC)	White Blood Cell Count	% Blasts in circulation	Absolute Neutrophils	Hematocrit (red blood cells)
13-Feb-15	3.53	31.0%	0.39	19.40
19-Feb-15	5.89	30.0%	0.47	22.40
23-Feb-15	10.02	25.5%	1.60	21.20
26-Feb-15	9.97	53.0%	1.20	18.20
2-Mar-15	5.48	32.4%	0.51	24.40
5-Mar-15	4.09	28.6%	0.97	22.90
9-Mar-15	5.40	30.3%	1.14	20.40
12-Mar-15	8.93	60.0%	0.54	26.10
16-Mar-15	18.39	56.0%	1.84	23.60
19-Mar-15	46.07	67.0%	4.15	21.20

Decitabine: Hypomethylating Agent

            We saw Dr. Fathi yesterday. David asked him: since the decitabine seems to be effective, would he have chosen it as the initial treatment. He said no: the 7-3 cytarabine/daunorubicin regimen that David started nearly a year ago at Walter Reed is the standard first-line treatment for someone of David’s age with AML (acute myeloid leukemia). Over the whole population it has a remission rate of about 70%. And David did achieve remission from it, it just relapsed. Decitabine therapy has a remission rate of 40% or less. So, based on statistics, which is all we have to go on, the treatment choice was reasonable. Of course, for each individual patient, the remission rate is either zero or 100 percent.

            The current decitabine infusion therapy isn’t technically chemotherapy. At high doses, decitabine can be used as chemotherapy, with the goal of killing leukemic cells (and healthy blood, hair, and gut cells as collateral damage). But at this lower dose, it’s a “hypomethylating agent”. The theory is that the decitabine can reactivate tumor suppression genes in individual cells (cool, huh?) and thus allow the leukemic blasts to mature into healthy cells.

For five days, February 23 through 27, we went to Cox 1 each day for the fourth round of decitabine infusion therapy. The next bone marrow biopsy, probably in about three weeks, will indicate how well the decitabine is working. It will also show the status of the various mutations involved. The bone marrow has its own ecology, like a garden. David has multiple mutations of his white blood cells, like a garden with a variety of weeds. If you pull out one type of weed, there’s the danger that another, existing weed will invade the newly cleared area. Unfortunately, we don’t know how to pull out all the weeds at the same time or speed the spread of beneficial plants.

And speaking of gardens, today we had a thaw: 40 degree weather and puddles in our driveway. Still plenty of snow, but in March there’s always hope of spring.

Last week we had some excitement. My idyllic afternoon dishwashing was interrupted by a sudden crash and breaking glass. My first thought was that a giant icicle (we have several) had hit our bay window. But the staircase landing was full of glass and snow, no ice. Looking through the shattered window, we saw a 12 foot piece of our gutter forming an upside-down V in a snowbank. Roof snow had melted and refrozen into a heavy ice dam on top of the gutter. The ice was probably a few hundred pounds. The weight had broken the gutter in two and sent one piece careening to the ground, bashing the window on its descent. The remaining partial gutter, also full of heavy ice, hung directly over the power line to our house. A contractor friend came to the rescue and successfully removed the gutter. He also gave us some insulating foam board to cover the window until we can get it repaired. Was someone talking about gardens?

Icicyles and Snowdrifts

            The snow has stopped here in Lexington. Our acre lot is a dramatic landscape of huge icicles, peaked, windswept drifts, low-lying tree trunks deep in snow, and circular wells carved out around other trees. The red of Sam’s Ford is completely gone on three sides; the North Wind has blown away some of the snow on the garden side.

            David continues to look good. He’s got a beard worthy of a mountain man and was able to visit Manhattan last weekend.

            His counts look good: the white blood cell count has stayed below 4 for 9 days, down from 9.13. The blast percentage is 42%, not great: normal is below 5%. He had a transfusion of red blood cells Friday, but doesn’t have to return to Cox 1 until Wednesday this week.

            For an hour a day, from 28 January to 1 February, David had his third course of five decitabine infusions. We hope the low WBC counts are at least partially caused by the decitabine. (The hydroxyurea certainly accounts for at least some of the dip.)

At the end of this 28 day cycle (5 days of decitabine, 23 days off), the nurse practitioner will do yet another bone marrow biopsy, to see whether the decitabine is attacking the leukemic blasts in the bone marrow itself. The marrow is the leukemia factory; we’re hoping the decitabine is scoring direct hits there. We’ll know in about two weeks if it’s making any headway.

Date of Blood Draw (CBC)	White Blood Cell Count	% Blasts in circu-lation	Hematocrit (red blood cells)	Platelets	Absolute Neutro- phils
5-Jan-15	2.16	6.0%	25.60	39.00	0.17
8-Jan-15	1.58	4.0%	22.10	39.00	0.16
12-Jan-15	1.04	4.7%	22.40	40.00	0.12
15-Jan-15	1.40	16.0%	22.40	38.00	0.03
19-Jan-15	2.29	22.0%	23.70	29.00	0.05
23-Jan-15	3.42	23.0%	23.80	36.00	0.34
28-Jan-15	9.46	49.0%	22.90	58.00	1.51
30-Jan-15	11.80	30.8%	20.90	78.00	1.30
1-Feb-15	9.13		23.60	66.00
4-Feb-15	3.39	42.0%	23.10	39.00	0.41
13-Feb-15	3.53	pending	19.40	49.00	Pending

Quiet As Falling Snow

            I haven’t posted for nearly a month, because there’s been no news: no blood transfusions, no sudden rise in white blood cell counts. A blessed, quiet month.

            We’ve had a lot of snow. Jim and I actually got out of Boston one Sunday evening, just ahead of one of the storms, and came back during another. We spent that first week of February in temperate San Francisco, staying with our niece Carla and her husband Daniel and visiting Ted and Kathy Perry. They are famous in our family history, cheerfully lending Jim their car so he could drive 33 miles from Princeton to Westfield for a first date with Mary Hazen.

            We visited the giant redwoods in Muir Woods in Marin County, and spent five days touring San Francisco: the obligatory cable car ride and a fun morning tooling around in a little go car (a glorified three wheeled motorcycle with GPS-triggered commentary), Dungeness crab on Fisherman’s Wharf, and even the Walt Disney Family Museum. Matt gave us the special edition boxed set of Mary Poppins and Saving Mr. Banks, so I’m on a Walt Disney kick.

            Matt visited David while we were gone and they had a whirlwind trip to Manhattan to see R’el. The trip ended with the three of them stuck in the snow of our driveway, after a harrowing drive home. They got the car unstuck and picked us up early Sunday morning. By Monday night my arm ached so from shoveling that I couldn’t sleep.

            I’m writing this from 205 Water St., Perth Amboy, NJ, my parents’ home since 1985. The Salvation Army truck drivers came today and nearly emptied the house: 3 recliners, futon, cabinets, tables, desks, and chairs. I said goodbye to the dining room set that’s older than me, and the loveseats I lay on as a baby. Mom had them upholstered 40 years ago, but they look brand-new, crisp and spotless. Luckily the driver couldn’t take the old metal student’s desk or the white resin porch chair (with the notice on the back written in Sharpie: “Stolen from 205 Water St.” Perhaps it did deter a would-be thief.) So, here I sit, at an old grammar school desk as dusk falls, watching Staten Island fade beyond the Arthur Kill and the rather lurid yellow Barge Restaurant sign glowing, half hidden by a sycamore tree. The white and pink Christmas cacti are blooming in the front bay window; the orchid is way past its prime. Mom and Dad loved this view for 29 years. I’ll miss it too.

The Ordinariness of One Pretty Good Day after Another

              The outpatient clinic on Cox 1 was closed for MLK Day, so we went to Lunder 10 for the requisite semi-weekly labs. The counts continue to look good; no need for a transfusion today. David stopped taking hydroxyurea several days ago, so it appears that the decitabine is effectively lowering the white blood cell count.

            Here are the numbers:

Date of Blood Draw (CBC)	White Blood Cell Count	Percentage Blasts in circulation	Absolute Neutrophils	Hematocrit (red blood cells	Platelets
5-Jan-15	2.16	6.0%	0.17	25.60	39.00
8-Jan-15	1.58	4.0%	0.16	22.10	39.00
12-Jan-15	1.04	4.7%	0.12	22.40	40.00
15-Jan-15	1.40	16.0%	0.03	22.40	38.00
19-Jan-15	2.29	pending	pending	23.70	29.00

            So, we continue trying to remember to appreciate each uneventful day. As Jim wrote in his summary of the past year: “Except for a few days of severe intestinal pain just before Christmas, the past five weeks have been the best since March. Mary, David, and I each seek in our own way to deal with the prospect of imminent death mixed with the ordinariness of one pretty good day after another.”

Happy Little Christmas

            6 January 2015: Epiphany, the day to celebrate the wise men from the east finding the young child, Jesus, and presenting him with gold, and frankincense, and myrrh.

            December was rough. After watching David’s white blood counts rise, to 90, 91, and 95 (very bad news) in the first week of December, he was admitted to Lunder 10, inpatient, on December 19^th, with severe abdominal pain: enteritis, or inflammation of the intestine. He was discharged on Wednesday, 24 December, in time for Christmas. And for 27 hours on December 27-28, all of our progeny were together in Lexington.

            New Year’s Eve, Matt drove David down to Manhattan to spend the holiday with all their siblings at R’els Manhattan apartment. Some went to Central Park for the midnight 4-mile run.

            On Friday, 2 January, David began the second round of decitabine chemotherapy. It’s caused some nausea and fatigue. His hematocrit (red blood cells) and platelet counts are relatively stable; the white blood cell count is low, which is great news. He finished his fifth and final infusion today and will take 3 weeks off while his blood counts recover.

            Here are the blood counts. For now, the goal is very low WBC.

Date of Blood Draw (CBC)	White Blood Cell Count	Percentage Blasts in circulation	Absolute Neutrophils
19-Dec-14	35.24	68.0%	1.40
20-Dec-14	27.57	55.8%	0.96
23-Dec-14	12.83	55.0%	0.38
24-Dec-14	7.99	23.4%	0.36
28-Dec-14	2.91	32.4%	0.10
31-Dec-14	2.56	7.6%	0.00
2-Jan-15	2.56	18.0%	0.13
5-Jan-15	2.16	6.0%	0.17