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.
Tuesday, January 31, 2017
Tuesday, January 24, 2017
Points of Light
Two Years Ago
January 23, 2015: David’s white blood cell count is very low: 3.42. Of these, 23% are leukemic blasts. [Spoiler alert: the percentage blasts will never be that low again.] Semi-weekly clinic appointments populate our weeks.
From my blog, January 19:
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.”
Mid-January 2017
This past week I’ve felt, at times, slow-moving and irritable. When I experience these feelings, I fear that it isn’t grief, but the dark side of manic-depression returning. (Like Richard Dreyfuss, I prefer ‘manic depression’ over ‘bipolar’. So descriptive of my actual experience.)
Since David’s death, and after my parents' deaths,I often facilitate the newcomers support group at DBSA-Boston (Depression Bipolar Support Alliance). I explain that for me, there is a distinct difference between grief and depression. I’ve been trying to come up with an analogy. Here's my latest attempt: it’s like the difference between a broken arm and a bone infection. They both can cause pain and swelling, but the etiologies are different and the conditions require different treatments.
When I am actively grieving, it hurts; I double over in pain. Grief is intense feeling; depression is a deadening, an emptiness I can’t fill.
So, am I getting depressed? I hope not. I’ve been stable for several years and I’ve gotten used to it. The prospect of going down into those depths frightens me.
But today I feel energetic and hopeful. It’s laundry day again, (it’s always laundry day on Tuesday, same day as my blog post), and laundry is a very satisfying activity, with a concrete and visible positive result.
Saturday evening, at 5 p.m., Jim took me for a spin in his new car. It was still light out; a welcome change from a few weeks ago when darkness fell at 4:30. We tooled down Lincoln St. and into the quiet town of Lincoln as dusk fell. Returning home, we drove around the block to survey our house from all sides in the dark. Jim bought replacement window-candle bulbs this year: LEDs. They are energy-efficient and will last a long time. They are also dimmer than the old incandescent ones and I wanted to see them from my neighbors' vantage. Their dim light looks more like real candles, little points of light in the winter night.
January 23, 2015: David’s white blood cell count is very low: 3.42. Of these, 23% are leukemic blasts. [Spoiler alert: the percentage blasts will never be that low again.] Semi-weekly clinic appointments populate our weeks.
From my blog, January 19:
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.”
Mid-January 2017
This past week I’ve felt, at times, slow-moving and irritable. When I experience these feelings, I fear that it isn’t grief, but the dark side of manic-depression returning. (Like Richard Dreyfuss, I prefer ‘manic depression’ over ‘bipolar’. So descriptive of my actual experience.)
Since David’s death, and after my parents' deaths,I often facilitate the newcomers support group at DBSA-Boston (Depression Bipolar Support Alliance). I explain that for me, there is a distinct difference between grief and depression. I’ve been trying to come up with an analogy. Here's my latest attempt: it’s like the difference between a broken arm and a bone infection. They both can cause pain and swelling, but the etiologies are different and the conditions require different treatments.
When I am actively grieving, it hurts; I double over in pain. Grief is intense feeling; depression is a deadening, an emptiness I can’t fill.
So, am I getting depressed? I hope not. I’ve been stable for several years and I’ve gotten used to it. The prospect of going down into those depths frightens me.
But today I feel energetic and hopeful. It’s laundry day again, (it’s always laundry day on Tuesday, same day as my blog post), and laundry is a very satisfying activity, with a concrete and visible positive result.
Saturday evening, at 5 p.m., Jim took me for a spin in his new car. It was still light out; a welcome change from a few weeks ago when darkness fell at 4:30. We tooled down Lincoln St. and into the quiet town of Lincoln as dusk fell. Returning home, we drove around the block to survey our house from all sides in the dark. Jim bought replacement window-candle bulbs this year: LEDs. They are energy-efficient and will last a long time. They are also dimmer than the old incandescent ones and I wanted to see them from my neighbors' vantage. Their dim light looks more like real candles, little points of light in the winter night.
Tuesday, January 17, 2017
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?
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?
Wednesday, January 11, 2017
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?
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?
Wednesday, January 4, 2017
"Ring Out, Wild Bells"
Two years ago
New Year’s Eve, 2014, Matt drove David down to Manhattan to spend the holiday with all the siblings at R’els Manhattan apartment. Some went in costume to the midnight 4-mile run through Central Park.
New Year 2017
As I wrote last week, we had a lovely and quiet Christmas. The anticipation was hard; the actual experience sweet.
And then, on New Year’s Day, at the beginning of the closing hymn in sacrament meeting at church, I was in tears. I mouthed the words for half a verse, then gave up and concentrated on not completely breaking down.
The trigger? My favorite New Year’s hymn, “Ring Out, Wild Bells”. (the only one I know of). Every year, on the first Sunday in January, we sing it at church. It has beautiful, hopeful words and fun-to-sing harmonies, ending with a Picardy third. (For those of you that don't have Wikipedia handy, a Picardy third is a major (happy) chord at the end of a piece in a minor (sad) key.) It’s very satisfying to sing in four-part harmony.
“Ring out, wild bells, to the wild sky…The year is dying, in the night; ring out wild bells, and let him die.
“Ring in the valiant men and free, the larger heart, the kindlier hand. Ring out the darkness in the land...”
Later, as I wonder why that hymn hit me so hard (Jim calls them ‘David moments’), I realize that the dying year, 2016, was the first full year of David being dead. 2017 begins as the second full year. There’s one fewer valiant men, a missing heart, a kind hand stilled. Not only that, but he would have turned 30 this year.
New Year’s is not a holiday I think much about. This grief reaction feels like slamming straight into a brick wall I hadn't seen. I anticipated Christmas preparations would be hard; singing “Ring Out Wild Bells” blind-sided me.
Later, after dessert at our Weekly Gathering dinner (every Sunday we have dinner for about 20 guests), Jim gathers everyone into the family room for some singing. As I sit down, he starts to sing “Ring Out, Wild Bells”. Surprisingly, I can sing with gusto and enjoy the wonderful Picardy third at the end. Note to self: sing “Ring Out, Wild Bells” throughout the year, as exposure therapy.
New Year’s Eve, 2014, Matt drove David down to Manhattan to spend the holiday with all the siblings at R’els Manhattan apartment. Some went in costume to the midnight 4-mile run through Central Park.
New Year 2017
As I wrote last week, we had a lovely and quiet Christmas. The anticipation was hard; the actual experience sweet.
And then, on New Year’s Day, at the beginning of the closing hymn in sacrament meeting at church, I was in tears. I mouthed the words for half a verse, then gave up and concentrated on not completely breaking down.
The trigger? My favorite New Year’s hymn, “Ring Out, Wild Bells”. (the only one I know of). Every year, on the first Sunday in January, we sing it at church. It has beautiful, hopeful words and fun-to-sing harmonies, ending with a Picardy third. (For those of you that don't have Wikipedia handy, a Picardy third is a major (happy) chord at the end of a piece in a minor (sad) key.) It’s very satisfying to sing in four-part harmony.
“Ring out, wild bells, to the wild sky…The year is dying, in the night; ring out wild bells, and let him die.
“Ring in the valiant men and free, the larger heart, the kindlier hand. Ring out the darkness in the land...”
Later, as I wonder why that hymn hit me so hard (Jim calls them ‘David moments’), I realize that the dying year, 2016, was the first full year of David being dead. 2017 begins as the second full year. There’s one fewer valiant men, a missing heart, a kind hand stilled. Not only that, but he would have turned 30 this year.
New Year’s is not a holiday I think much about. This grief reaction feels like slamming straight into a brick wall I hadn't seen. I anticipated Christmas preparations would be hard; singing “Ring Out Wild Bells” blind-sided me.
Later, after dessert at our Weekly Gathering dinner (every Sunday we have dinner for about 20 guests), Jim gathers everyone into the family room for some singing. As I sit down, he starts to sing “Ring Out, Wild Bells”. Surprisingly, I can sing with gusto and enjoy the wonderful Picardy third at the end. Note to self: sing “Ring Out, Wild Bells” throughout the year, as exposure therapy.
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