Mothers' Day 2016

        Mothers' Day was easier than I expected. I experienced a lot of anticipatory grief in the week leading up to it, but the actual day was pleasant, including a luncheon at church and phone calls from my kids.
       Then yesterday in the shower I listen to WCRB. Cathy Fuller announces "The Moldau" by Smetana. This is one of my very favorites; I played it in the viola section of the New Hampshire Philharmonic back in the early 90s. As the piece begins with gentle flutes and soft pizzicato strings, my happy anticipation immediately turns into grief and hot tears. Music can do that to you.

       The first few weeks of May, two years ago, were some of the bleakest in the leukemia experience. I prefer short blog posts, but there was just too much going on to condense it into a short post. Please share the journey with me.


2 May 2014
Great news: the bone marrow biopsy shows signs of leukemia remission. He has so few bone marrow cells that another, confirming biopsy must be performed in about a week, but we are all hopeful that the process towards a bone marrow transplant can move forward.
3 May 2014
I take a Megabus from Boston down to Secaucus Junction, New Jersey, where my son, Matt, picks me up. He’s going to run a marathon along the Susquehanna River starting in Danville, Pennsylvania, literally the town I was born in (Geisinger Hospital, now a large regional medical center). I plan to walk a half-marathon.
May 3rd is a beautiful spring day and the brisk 13.1 mile walk along the river valley where I was born is a refreshing break from the stress of the past eight weeks. Matt finishes his 26.2 mile run in about 4 hours. I cover half that distance in about the same amount of time. Twice his age, half the distance: I’m proud of my accomplishment.
We drive to Perth Amboy, NJ, where Matt drops me off at my dad’s house. Matt will be in Bethesda with David a few days before me. Jim has taken the Friday night Megabus to visit David, who is in good spirits. Charlotte, Jim's mom, arrives in the afternoon. She comments that David is good at letting people know what he needs. David quips, “Well, yes, I’m the one who is the leukemia patient. I have the trump card.”
A detailed conversation with Dr. Mo clarifies that although attending physicians, fellows, residents, and nurses rotate with dizzying frequency, Dr. Mo is managing David’s case. He is in touch with a bone marrow transplant doctor at Massachusetts General Hospital and is making arrangements for a transfer there as soon as David achieves remission.

May 4, 2014
I go to 10 o’clock Mass with Dad at St. Mary’s Church in Perth Amboy. We have brunch at the Reo Diner in Woodbridge, then drive to Rahway Hospital to visit my brother Michael, who is being treated for a large kidney stone and subsequent infection. Michael is my only younger brother. (I have three older brothers and a younger sister.) He is severely intellectually disabled. As a child he was quite a talker and enjoyed special education classes in public school, but for all of his adult life he’s been unable to talk. He’s asleep when we arrive. I sit with him and my dad, half-watching a Discovery Channel piece on the “United States of Bacon”, in which a loud, obnoxious man goes to different restaurants all over the country, seeking the ultimate bacon delight. The first destination was Chicago, and I assume that place had won first place, but I soon realize the man only deals in superlatives. “You keep using that word. I do not think it means what you think it means.” [Princess Bride]. I love bacon, but this program is over the top in inanity. So I try to ignore the TV and sit next to Mike, gently and impotently rubbing his arm, his crewcut head, his hand. Looking at the PICC line and thinking about my other boy with plastic tubing. My other boy with the bald head, similar to Michael’s crewcut. Mind-numbing. When his lunch arrives, Michael eats voraciously, in contrast to David’s painfully slow hour-long meals with his esophageal pain.

May 5, 2014
I take my dad to a medical consult. He has minor surgery scheduled, but his lab work showed an elevated white blood cell count, so the surgeon insists he see a hematologist. Two months ago I didn’t even know what that was.
As we sit in the waiting room my cell phone rings. It’s Matt. David has a badly infected colon and will have emergency surgery to remove it. I feel torn between my two worlds: my 91-year-old widower-father and my leukemia-patient son. I explain to Matt that I can’t do anything at the moment but will take the next Amtrak train from Metropark, NJ to D.C. when we are done at this appointment.
       Meanwhile, the hematologist concludes that although my dad’s WBC is elevated, his unrelated surgery doesn’t need to be postponed.
When I get Dad home I make a reservation for the 129 Northeast Regional Amtrak train, leaving Metropark at 5:13 p.m. Arriving at the station, the 127 train, scheduled to leave at 4:36 p.m. is sitting on the tracks. I get on, call Amtrak on my cell phone, and change my reservation. Perfect. I didn’t stress myself by making a reservation for the earlier train, but I get on it.
I type in my journal: “David is in major abdominal surgery. His colon is swollen. They will remove his large intestine and hook his small intestine to a bag, which he will wear the rest of his life. Typing this threatens tears. I don’t want to think about it. I don’t want this to be happening. I want WiFi, which isn’t working on this train.”
Matt is with David. The anesthesiologist lets Matt hug David before the surgery.
6:24 p.m. The train passes through low country and across bodies of water. We’re in Maryland, north of Baltimore. The trees are soft and green. I get a little car sick with all the close trees and the swaying of the train. I open a Fresca. I type some more.
“I’m a bit numb. It’s all happening so fast. All of a sudden David’s life has changed again drastically. Removing the colon. Wearing a bag the rest of his life. On top of the chemo-induced sterility, which happened in Korea (and without patient consent, btw), the dangers of chemo, the dangers of killing all his bone marrow before a transplant, the dangers of the transplant, the long recovery. I’ve just got to stumble through this. Lots of people love me and our family and they are praying for us.
Sipping a Fresca. Keep breathing.”

5 May 2014
David's surgery to remove his large intestine lasted about three hours. The cause of the infection is c-diff (clostridium difficile). It’s a common microbe but between David’s low immunity and the competing species in his gut wiped out by antibiotics it has taken over his large intestines.
       Matt remains with David all day May 5, seeing David after the emergency surgery.

6 May 2014
The SICU (Surgical Intensive Care Unit)
I arrive by Amtrak and Metro Red Line around 8:15 p.m. It’s strangely comforting to be far away from home, and on a Red Line. I'm grateful that Matt had prepared me for the change in David. Looking into a brightly lit hospital room I see a pale, other-worldly face with impossibly smooth skin and prominent jaw. Matt had warned me not to come right into the room. In the hallway is a large plastic cabinet full of yellow paper gowns, grey gloves, and stiff blue face masks with thin metal strips to bend against the bridge of the nose.
       Although David stirs and even speaks during the evening, he’s incredulous the next morning when Matt tells him that I had visited.
Next day David is alert, with color in his cheeks. We have a constant stream of medical visitors at the SICU: the surgery team doing rounds, an oncology fellow, the GI team, the infectious disease team, a neurology resident, and nurses and students.

The gowns, gloves, and masks are protection for us and other patients: as David announces, “I’m a bio-hazard.” C-diff is a serious infection; everyone suits up to guard against catching it and spreading it. The foaming hand sanitizer, de rigueur on the 5 West hematology/oncology ward, isn’t effective against C-diff; thorough hand washing is the best defense, to wash away the spores.
David’s respiration rate is high, so he will spend a second night in the SICU, where they monitor him carefully and treat him with extra fluids easily.
Dr. Mo plans to do another bone marrow biopsy Wednesday or Thursday. If the results aren’t good, he will start more therapy immediately.

Tuesday, May 3, 11:55 p.m.

All through this week the email from David I posted last week reverberates in my mind. He was so upbeat, so understatedly funny. Implying that his older sister was adopted because her bone marrow didn’t match his. There was a lot of hard living to go through the next two years. And now, of course, he’s dead.
It’s ten p.m. Tuesday night and I am committed to posting before midnight. Unlike some other weeks, where I start a draft post early in the week, I am starting from scratch right now. The reason is obvious, has been obvious to me for weeks. The week of April 30 to May 6, 2014 was the start of one of the darkest, most painful months of the whole leukemia experience. I just haven’t been able to go back and read and organize the various accounts I have scattered among my Word documents.
I want to process them and write about them, but that hasn’t happened yet this week.

Just today Jaye, our grief counselor at Good Shepherd Hospice, forwarded to me a grief newsletter on the theme of Mothers’ Day and bereavement. One of the articles, on bereaved mothers, made me cry. And I was stunned to realize that although I had thought many times about Mothers’ Day in the past few weeks, NOT ONCE had it occurred to me that this year would be the first one since David had died. Talk about denial. But, since Jaye sent me the newsletter my conscious mind is on notice: May 8, 2016 may be (like 99.99% probability) a difficult day to get through.

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.