End of April

End of April 2016

As I stated in this blog, Easter Sunday (March 27) was painfully difficult for me this year. What I didn’t state then was that the day I wrote that post I started the following week’s entry, “Well, this week was better.” It wasn’t.
Last Friday (April 22) I had my biweekly therapist appointment. I’m still struggling with the persistent idea I have that recovery from grief should be linear, that every week will bring a lessening of the pain. It’s just not so. I have happy times, I’m functioning, but when the hurt comes it is as intense and debilitating as ever.
I recognized going into it that Patriots’ Day would be hard, stirring up memories of the past two holidays. On Patriots’ Day 2014 we were in Massachusetts and David was at Walter Reed, recovering from an appendectomy and dealing with chemo effects. Patriots’ Day 2015 saw him at home, 10 months after the failed bone marrow transplant. My therapist, also a David, pointed out to me that Patriots’ Day was also hard because it was a family gathering with David missing. R’el, Peter and Xiomara and little Andrew and Victoria, and Annie, all the way from Idaho, were here to cheer Matt on at the Boston Marathon. Four kids in Massachusetts, one in California working, and one dead. Odd, that I didn’t consciously recognize that connection. A hospice mailing talked about ‘grief police’. That’s people who think it’s time to ‘get over it’ and move along. My most unsympathetic grief policing comes from within. I need friends who can remind me that this isn’t something to ‘get over’; it’s something to live with.

End of April 2014

With our niece’s wedding in Utah successfully attended, my latest crisis is over. David seems stable and the report from Bethesda is that there’s not need to rush back. However, I feel drained, limp with exhaustion. I expected to take long walks every day in Utah: didn’t happen. (It hardly ever does when I travel, why do I keep expecting it?) I sleep long, with many dreams floating just below the surface as I wake enervated.

David’s second round of chemo concluded Thursday evening, April 24. He sounds good on the phone. And his email on April 29 is downright chipper:

Results are in and Sam is a perfect match as a bone marrow donor. Results for other siblings are still pending, except for Reutron who definitely is not a match. R'el, do you want me to help you start a vicious rumor that you were adopted?
I've talked to Sam tonight to let him know. He's fine with letting everyone know, so this is bloggable.
Everything is now dependent on how the leukemia fared under the second round of chemo. If the second round accomplished its proper effect, the transplant could happen in six weeks. Otherwise it would be further down the road. That's about as much we know now.

Patriots' Day 2014 and 2016

                                 

Women and children tend to the wounded

2016 photo by Maggie Lee

Patriots' Day 2016

It’s Tuesday, the day after Patriots' Day. Peter, Xiomara, and their kids leave for home, then Annie spends hours cleaning the house: sweeping floors, removing masking tape arrows from the floor (used to indicate traffic flow for our Patriots’ Day breakfast yesterday morning), vacuuming. I start washing the bedding from our house guests (my sister, Maggie, daughters R’el and Annie, Boston Marathon runner Matt (he did it!), and Peter and Xiomara and kids), who all came to celebrate Patriots’ Day (a state holiday in Massachusetts and Maine, commemorating the Battles of Lexington and Concord on April 19, 1775) and to cheer Matt on.
 Monday was challenging for marathon running: sunny and in the 70s. Matt’s ideal is cloudy and in the 40s. A little rain isn’t bad, much better than blue skies and sun. It’s not too late to donate to the Leukemia and Lymphoma Society in support of Matt’s marathon effort http://pages.teamintraining.org/ma/boston16/mjohnston. His goal is $26,218.75 (get it?).

I was grateful for my family’s support in preparing for our big Patriots’ Day breakfast. It was hard to muster the energy required preparing for our first Patriots' Day without David. Even without consciously focusing the painful memories surrounding the past two Aprils, when David was so sick, they weigh on me. But everyone pitches in and helps tremendously.
        Jim and the Arlington Ward Boy Scouts park 49 cars in our yard, with no car blocked. After the Battle of Lexington reenactment at 5:30 a.m. we feed about 125 people.
R’el and Matt leave Monday evening; Maggie and Peter, Xiomara, and kids leave early Tuesday afternoon. Annie cleans and organizes for hours, so my typical post-event letdown is gradual and gentle.

Patriots’ Day 2014                      

We have a successful Patriots’ Day in Lexington. David’s still inpatient at Wrenmimic (Walter Reed). The doctors sedate him and put a camera down his throat to discover the cause of his extreme esophageal pain: viral infection. An anti-viral eases the pain. His vision is still quite poor from the retinal bleeding, so he can’t read on his computer easily.
Monday evening we talk to David on the phone. Jim asks him if we should go to Utah the next day for our niece’s wedding. He doesn’t say ‘Don’t go’, but also is obviously not enthusiastic about our trip. We decide to go.
While flying to Utah on Tuesday, April 22, I feel my heartstrings stretch taut again. One end is attached to a military hospital room in Bethesda, Maryland. It’s not as painful as the day in South Station in Boston, but pain doesn’t have to be a ‘10’ to hurt. For two days I live on edge: will I need to return to Bethesda before the wedding in Salt Lake City? How will I know? The morning of the wedding I relax; if I have to cut my trip short at least I've attended the wedding. Back in Maryland David’s bishop visits David and reports that there is no need for us to rush back: David is feeling better.
The day after the wedding we drive with Sam to Brigham Young University, where he is a junior. The BYU Museum of Art has a special exhibit of religious art. For a donation I receive a beautiful portrait of the Savior, which I later frame and display. Next Tuesday, April 29, we fly back to Massachusetts.

Walking among Pink Clouds

10 April 2016
My days are a mix of useful busyness and sorrow. As happened when David was sick for those seventeen months, stabs of anguish find me at unexpected moments.
Our church choir rehearses for the Lexington Interfaith Choral Festival. I’m fine, and then I face ‘No more a stranger nor a guest, but like a child at home’, from My Shepherd Will Supply My Need. The intensity and suddenness of the tears undoes me. My face contorts. My voice shakes. How will I make it through the actual performance?
As I drive to the Festival, a plan develops. Alone in the car, I sing the phrase over and over, loudly and with conviction. As the phrase becomes familiar and I experience singing it without my throat constricting and my face crumpling I gain confidence, which sees me through the day.

10 April 2014
I walk among pink clouds today. After a day at Wrenmimic (Walter Reed) I take the Metro to downtown D.C. I walk several miles, past Smithsonian buildings and around the Washington Monument. At dusk I skirt the Tidal Basin and stop at the Jefferson Memorial. All along the way, as I look up at the soft pink petals of the cherry blossoms I am transported into an enchanting pastel heaven.

I’ve never been to Washington during Cherry Tree Festival. For many years we visited Steve and Maria for spring school vacation week, but always too late for the blossoms. This year I savor a magical evening of delicate beauty.



11 April 2014
Happy Birthday, Sam!
David has his third bone marrow biopsy to ascertain whether or not the first round of chemotherapy has put the leukemia into remission. We’ll know the results in a week.
From my blog:
I’ve got Megabus tickets to return to Lexington Monday evening, April 14th, barring another appendectomy: highly unlikely, since I’m 85% certain that even David was only issued one appendix. Jim and I hope to host our annual Patriots' Day breakfast, with a little help from our friends.

12 April 2014
David’s beard starts to fall out. The chemo is so harsh he has to cover the toilet before flushing; even his urine is toxic. His esophagus is raw; eating a meal takes over an hour, each swallow painful.

14 April 2014
At 7:30 a.m. my brother Steve drops me off at the Medical Center Metro station across from WrenMimic and by 8:40 a.m. I am sitting just behind the driver on a Megabus bound for Boston. We’ll travel via Philly and Secaucus, NJ. I spend the day reading book group books on my new Kindle: Some Buried Caesar by Rex Stout (my selection for our family book group) and The Ocean at the End of the Lane by Neil Gaiman (my women's Relief Society’s book group selection). They are novels, light, easy reading, perfect for a long bus ride. However, as the bus approached South Station in Boston, my heart starts to ache. Waiting for my luggage to be lifted down from the storage bin, the tears start, and I weep as I pull the big black roller-bag into South Station and toward the T. I get through the turnstile, then become lost looking for the outbound Red Line train platform. I take an elevator, but it brings me to the Silver Line. The only escalator I see is going in the wrong direction, so I lug the heavy suitcase up the stairs. My nose is running, but I have no tissues; in short, I’m a crying mess. My heartstring is stretching between my body in Boston and Bethesda, Maryland. It’s taut and about to snap.

Snow Day This Year, Appendicitis Back Then

April Fools' Day

                                           My lovely purple hyacinth three days later.

5 Apr 2016
The light snow of Sunday is followed by a stormy Monday. It snows all day and the distinctive sound of a pickup truck with a snowplow blade on front rolls up our driveway twice. I take a snow day and postpone my piano lesson. It's peaceful to stay home all day while the snow falls.

2 Apr 2014
One week at Walter Reed Military Medical Center (I hold a contest to find a good nickname for WRMMC; humor helps in dark circumstances. Matt wins with a bona fide word: Wrenmimic, a small decoy shaped like a small bird.) David remains in good spirits. He walks laps around the ward halls, pushing the ubiquitous IV stand. I have times of sadness and tears, but mostly I remain calm and serene. I sleep well, literally essential to my sanity since I have bipolar disorder.

3 Apr 2014
David is tolerating the chemo very well. His white blood count is down, as hoped. His beard is getting downright bushy. On Tuesday he wrote:
We have won. Prior to today I was growing the beard betting that nobody was going to call me out on it [he’s an active-duty soldier, remember], and I was correct. But as of today, I am officially forbidden from shaving. ha. Also I'm more than halfway through the first round of chemo and the beard is showing its true mettle.
7 Apr 2014
We learn more from the bone marrow biopsy: David’s AML sub-type is FLT3-ITD. His chromosomes are normal, but there is a gene mutation that is driving the leukemia process. The five year survival rate is 5%. Basically, his bone marrow is producing too many immature white blood cells, which are crowding out his healthy blood cells, both white and red.
David is officially neutropenic: because of the chemotherapy he has too few white blood cells to protect against infection. He wears a yellow mask whenever he leaves the room.
8 Apr 2014
Late last night David developed appendicitis and had emergency surgery. When I arrive at Wrenmimic I ask the oncologist, “Any news?”
“He no longer has an appendix.”
I planned to take a train back to Boston this morning. Since I don't yet have internet access at the hospital, my sister-in-law, Maria, cancels the Amtrak tickets for me. Instead of travelling home I walk six miles.

A Spring Snow

April Fools' Day and my purple hyacinth was in bloom:

Two days later, New England is a winter wonderland again. Blue skies, dazzling white snow, and bright green grass underneath.

We spent the afternoon watching the LDS General Conference satellite broadcast at the Belmont Chapel.