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.
Tuesday, August 23, 2016
Tuesday, August 16, 2016
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.
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.
Tuesday, August 9, 2016
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]
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]
Wednesday, August 3, 2016
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.
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.
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