Mucositis

Two years ago

Another first: on July 21, 2015, David doesn’t walk into Cox Clinic; I park at the Fruit St. Garage and wheel him in on a borrowed wheelchair. (Thank you, Deb Butler!) He doesn’t bring his laptop, just the most recent issue of The Economist. He hasn’t eaten in several days (a ‘last time’ we didn’t notice: his last meal), just sips of warm milk and honey water. All day long he coughs about every 10 minutes and his throat pain is 8 out of 10. Dr. Fathi thinks the leukemia is causing the painful inflammation.

Second Half of July 2017

I spent some time with my old blogs this week, preparing this post. Two years ago, David had less than 3 weeks to live. We lived day-to-day, not knowing when he would die, how he would die, where he would die. Dr. Fathi warned me that final-stage leukemia could cause a patient to bleed to death. Would that happen as I drove him home from MGH on Storrow Drive? Would Annie make it home from Beijing before David died?

It’s painful to sort through the blog posts of the final three weeks. I weep, overcome by acute pain, trying to process those final days.

Yesterday I woke up to rain falling outside my bedroom window. Usually this is the hottest week of the summer, but the temperature was only 59 degrees. I decided to read the ‘living onward’ chapters in Melissa Dalton-Bradford’s book On Loss and Living Onward. Now that David’s death is almost two years ago, I thought I was ready to re-read her thoughts on the next phase. But as I glanced at a bookmarked page, comparing grief to the feeling of physical drowning, it all came rushing back, the wrenchingly intense sorrow. I turned to Jim and cried in his arms.

In my journal last November I asked myself, “what is the balance between acknowledging, accepting, and fully experiencing strong emotion and moving on? Is misery always self-imposed?” At this point, I’m living onward, functioning well, but right now, July 2017, the grief is close to the surface. I want to feel, want to acknowledge the loss, experience the grief, not pretend it’s not there. I've lost my son. That's not going away.

Three Julys

Two years ago

We continue to live day-to-day. David has severe throat pain and can't eat or drink anything but warm honey water, getting weaker daily.

Rockport 2017

Jim and I spent two days in Rockport on Cape Ann, (the other Cape), at a charming AirBNB. I had a ‘German Shepherd' hot dog at Top Dog (befitting the Hot Dog Queen of the East) and in the evening we heard David Deveau  in a piano trio concert.
Saturday we stopped in Gloucester for lunch at the Blackburn building, now housing the restaurant Halibut Point. Howard Blackburn was a Nova Scotian fisherman whose rowboat was separated from the main fishing vessel; he bailed and rowed for five days in the frigid open sea and survived by letting his fingers freeze in a curled position so he could keep rowing. Although he lost all his fingers and parts of both thumbs, years later he sailed solo across the Atlantic, twice (two times), setting time records.

Like the underground Lost River in Indiana, I can feel a quiet current of grief  beneath my day-to-day enjoyments. The memories of Julys past: 2014 with a cautiously tentative hope as we inched toward the 100-day mark after the stem cell transplant, 2015 as David got weaker and stopped eating, and 2016 with the anticipation of the first anniversary of his death.

Now, when I plan to work on my blog, the weight of those Julys make it difficult to start. So far I’ve been able to keep my pledge to blog every week. I appreciate you reading it.

"Our Look Over the Brink"

Two years ago

July 2nd, David woke at 7:00 a.m. coughing heavily, consistently bringing up small amounts of blood. When our friend who lives on the third floor went downstairs on her way to work, David asked her to get him help. She came up and knocked on our bedroom door. Jim went to talk with David, who was waiting for an ambulance. Jim rode with David to Mass General. David’s sense of humor shone through: when the paramedics transferred him to the emergency department hospital bed, he said, “The hospital certainly has nicer beds than you do.”
He had nearly constant coughing, with blood, then got an hour of relief. When the coughing started again, there was more blood than before. An ENT (ear, nose, and throat) doctor came and probed with a camera via his nostrils. The ENT doctor’s best guess became that the blood was coming from his lungs and was related to the two-month-old pneumonia. The next diagnostic step would be a bronchoscopy, with sedation and intubation to maintain the airway, hoping to locate the source of the bleeding.
About this time, Dr. Fathi, David’s main oncologist, came by. He gently suggested to Jim and David that a bronchoscopy was a possibly irreversible step toward being permanently intubated and in the intensive care unit until the end of life. David vetoed the bronchoscopy.
With the decision not to do the bronchoscopy, , David was allowed for the first time all day to drink. He said over and over how good the ginger ale tasted. Then he fell into a restful sleep sitting up in his hospital bed.

Later that afternoon, David was transferred to Room 2004 of Phillips House: MGH’s deluxe hospital accomodations, since Lunder 10, the leukemia unit, was full. Phillips feels like luxury condominiums, with beautiful dark woodwork and high-end wooden doors. Each tastefully appointed private room includes a flat-screen satellite TV, and they serve specially prepared meals. David’s room had a glorious view of Beacon Hill and downtown Boston.

Jim emailed our kids, with the subject line “Our Look over the Brink.” He chronicled David’s day: the end of David’s life felt very near. His pneumonia couldn’t be cured; he had internal bleeding; and the leukemia was barely being kept in check by increasingly high doses of hydroxyurea. He was also steadily losing weight.

From the start of his illness, 15 months earlier, David didn’t want to talk about death, pain, his feelings, or his wishes for his end-of-life. However, in the hospital, he talked to Jim about his funeral, saying that he wanted nobody to feel pressure to travel long distances for it. He said he was glad that his younger sister Annie had gone to China to study that summer and that he didn’t think she should come back for his funeral. He wasn't in denial; he had thought carefully about these things.

July 4, 2017

On the fourth of July this year, the founder of a RSS service (which compiles summaries of blogs) commented on my blog that his reviewers had named my blog one of the “top 50 leukemia blogs.” I googled the service: ‘Is this legit?’ Although I found a favorable PCmag review, I also found a Better Business Bureau rating of ‘F’ and numerous complaints about hijacking email contact lists and spamming invitations to join the service at $24 a year.
I clicked through and found my blog (which was truly listed as #10), but since I couldn’t read it without providing my email address, that's as far as I went: I’m not taking any chances. So, just so you know, according to one (perhaps shady) RSS website, I’m #10!

Continuing to browse the web, I googled Leukemia blogs. Mine did not come up. But the search brought back memories of David’s illness, with websites describing the types of leukemia, survival rates, and answering questions like, ‘What’s it like to have leukemia?’, ‘What do you die of?’ and describing‘What happens immediately after death.’ These aren’t pressing questions any more. I just wish the answers had been different.

Step Three

Two Years Ago

        On July 2nd, 2015, I read step 3 in the LDS version of the 12 steps:

“Decide to turn our will and our lives over to the care of God the Eternal Father, and His Son, Jesus Christ.”

Then I wrote in my journal:

I need to stop being “consumed with feelings of fear, discouragement, and despair.” It's going to be hard.


July 4th, 2017

Jim and I took a whirlwind trip, starting with a church youth conference in Palmyra, NY (site of the founding of the LDS church) on Thursday, a six-hour drive to NYC Friday afternoon, the Mormon Arts Center Festival at Riverside Church Friday evening and Saturday, a delightful supper at Kitchenette Uptown with our NYC kids and grandkids, and ending with the 4-hour drive home Saturday night.

I thoroughly enjoyed the trip and am thoroughly enjoying being home.

Last night, July 3rd, our evening walk turned into watching the excellent and entertaining town fireworks (always scheduled early so as not to conflict with the big Boston Pops concert and fireworks on the 4th). Afterwards we took the long way home to avoid the throngs on the sidewalks of Worthen Road.

July 2nd, I went with Jim to church at the Kendall Square stake center. While he attended the Spanish-speaking congregation, I went to the English-speaking Cambridge 2nd ward, since I only understand about 5% (generous estimate) of Spanish-language meetings. It was Fast and Testimony Meeting, when anyone in the congregation can stand at the pulpit and speak briefly. I spoke of manic depression and David’s illness and death. Afterwards, a young man approached me to say that he remembered David. He and another young man were in the University Ward with David, back in 2010. It was heart-warming to hear their memories of David. Most of their cohort have finished their schooling and moved away years ago. Even in our home ward, there are few left who ever knew David before he was a leukemia patient.

As I considered this, I emailed Peter’s wife, Xiomara, asking when she met David. She sent a sweet email, listing the many times she had been with David over the years. The first time was about eight or nine years ago, at R'els Brooklyn apartment. David had returned from his mission and he and Jim and I had driven down for a visit. Xiomara happened to visit R'el that same day.

        She has a very good memory; I appreciate it.