(in short dated snippets. there are many thoughts, journal scribbles, voice notes and such. but the dynamic nature of things no longer allows me a period of time to let the thoughts flow, not even the evenings. update through 3/13)
Week of 2/14 (referring to weeks starting with Mondays).
Her mental status is most affected after a week or so past the last bisphosphanate infusion; and the hepatic encephalopathy is surely also slowing creeping in. And so on the day just prior to the next infusion, I felt a lot of emotional pain watching the neurological dips start to take some agency from her. Such as being locked out of accounts after mistyping 2FA codes and such. Because of self-awareness around her mental status changes, she is both hesitant yet eager for an upcoming trip we hope to take to the coast.
~~~
Week of 2/21
Managed a trip to the OR coast. It took some planning, meds timing, hospital infusion timing, all sorts of logistics around hospices (which are region bound), and friends’ support to make happen. And of course the love, care and support of the Andakers. From early days of being climbing partners, to friendship, to family trips. From Annie getting to read to the little ones in Hawaii, to now them in turn teaching her a new game. However short, it was a wonderful last trip for her to have, filled with beautiful sunsets. Very grateful for this time with each other and the friendship that enabled it.
The week continued…
You could call the trip “in the nick of time”. A decline (the standard word used) began soon after. We got back from the trip for her Friday infusion. And then chilled the rest of that day, a moment for her to revisit and houseclean social media.
The next morning, the little skin prick where her port was de-accessed from the day before never fully dried/clot. Blood was splotched all over her pajamas and the sheets. And her nose started bleeding too. Both took a while to stop. Our liver happens to play the central role in the synthesis of our blood coagulation/clotting factors.
It was also this weekend that she had her first uncontrolled fall. We were lucky. It was on carpet, her instincts had her somehow do a gentle sprawl. Missing the bedside table corner, she got out of that event unhurt sans a small carpet burn on one knee. No more falls since and hopefully just no more. Motion detectors and security cameras now play a surprising alternate role.
And on Sunday morning, among other questions, she awoke to ask what was the direction of breakfast, N, S, E or W. Changes.
Despite all this, she is still peaceful when she naps.
~~~
Week of 2/28
A week of up and down changes, a week of learning, the first of hard days.
Let us sandwich some good stuff shall we? The love, care and support showered upon her and I does not cease. We are so grateful. Remote work from our home while I take the car to service, being available to receive medical deliveries while we are out to infusion, the “meal train”, the good milk teas, the sending of house cleaners, the late night doctor chats, teenagers handling yard work, combo of lunch and fixing of leaky dishwasher line, the many texts providing specific offers of help, the Amazon arrivals of useful functional things, the solution solvers, domain experts, the photo memories, the craft makers of something special for the future, the morning coffee deliveries. There are those in life who are okay with discomfort; to still see, listen, hear and step up as things in life get hard outside our immediate bubble. We are grateful that so many of you are part of the crew caring about her. More on this, a captured interaction of hers. Also appreciating the poor quality saves from the home security cameras actively detecting motion.
To lessen the physical load of going up and down the stairs, the homecare bed (“hospital bed”) makes its appearance in the living room. We had tried to decide between different locations and eventually went with being by the fireplace, diagonal, with a view to the change of seasons out the other side of the bed.
We alternate between day naps here, or on the couch, with nights back up in the bedroom. The nursing aide also comes to walk me through the efficient process of doing a seated or lying down bed bath after I called hospice needing help, professing that my attempts were clearly very sub optimal. We have our old wedding party photo up on the fireplace mantel. Last week, while one of the groomsmen, Ernest, was here and asked the “how” question in support and encouragement, my answer was simple. It was he that gave food for thought the year Annie and I were married. “Love, is a commitment.”
The buildup of fluid in the abdomen, ascites, continues, stretching the skin like an accelerated pregnancy. Uncomfortable. The neurological effects of encephalopathy start to take hold a bit more. Asterixis, causing drops of the wrist begins manifesting. And boy, adaptive/assistive tools and technologies only scratch the surface of what can be done. I am deeply respectful of people with challenges that have to navigate such everyday of their lives. She starts seeing grids in the ceiling in the mornings, and words not longer connect like they use to. And the first of hard nights, this one of constant diarrhea and vomit. We had some good chats while catching our breaths between bouts. The next morning’s message to me as I awoke was certain; the hard days are here. We can still strive for comfort, peace, love.
Now, there are still always moments. The good ones. One night, she simply held my face at night. And we managed a walk around the block.
And one last game of wordle. The encephalopathy causing alphabet reversals, and asterixis causing finger keyboard targeting issues. And yet, she solves it.
~~~
Week of 3/7
The week she drifts away from us to a serene place and back to us.
It kicks off with a chat with her childhood buddy, still dear friends to this day.
Of course, the infusion of love again does not stop whilst she is here. My fellow solution brainstormers both last week and this have been at it. Iterating methods of toothbrush use, figuring out good ways to add double handles to tumblers and soup mugs, the girl group stuffing tampons into noses for nosebleed-tampon sizing tests, improving bed hair washing basins, and more. I’m really glad for climbing equipment. And of course food requests like dim sum, taiwanese. And food surprises like japanese crown melon
We watched what would likely be her last move/tv show. She had requested Anita (2021), about a Hong Kong singer in the past and her journey till cancer.
Then the hard sleep-little nights, two in a row. The uncontrolled incontinence caused by the sweet indigestible sugar to cause multiple bowel movements to help with hepatic encephalopathy. We had previously talked through this. When it got to a point of discomfort, it will no longer be worthwhile to keep taking this medication. The second night layered on the nose bleeds. (Liver makes the clotting factors). Double whammy. We did have one moment of hilarity. In my haste to optimize the changing, cleaning, lotioning, and sanitizing between assisting with the simultaneous dual events, she became hyper alert and warned me that if I continued, I would get poop on my head. It was good laughter for a second near sleepless night. Exhausted the next day, it marked the transition to sleeping the nights downstairs. The transition was abrupt and I was not as prepared for the split up and down dual use. It took one disorganized morning of sleeping pad to the side, morning laundry on the couch, half lotions upstairs, half downstairs, to shake me back to restaging things.
We did make it to her infusion at the clinic. Though it was somehow evident to us that this would be her last. It was also the first time she used the wheelchair vs walking. The music therapist came by as she lay there during the infusion and acoustically played some songs. Music invigorates her and her feet and hands tapped to gentle rhythm. I teared up once, and so did her nurse(s). I won’t list the lyrics, but they all felt meaningful. You’ve got a friend (Carole E King), Lean on Me, Stand by Me, You are my sunshine.
The week also included her final haircut. She had mused about having one and a wash. So I had the privilege to do her final haircut. Going for a pixie, ended with more a slight bob perhaps since a pixie would need more styling. Also likely the last time she made it to the master bathroom upstairs, where we used the shower chair; she sat, I washed her hair. Phoebe was here helping out, tidying up the haircut remnants and the rest of the “bedroom/living” downstairs. While in the shower, Annie asked why she deserved Erick and Phoebe’s help; and that of all of you. She has always just been that quiet stable soul of a sister to everyone, as written and said sentiments reflect. After we managed to make it down the stairs, they had their moment. This is but one captured moment of the love many have showered upon her; and the love she has loved you with. Authenticity. Genuineness, openness, being present and engaged, to see who each other are. The likes of harvard business review would say being a chameleon is more successful in a professional career, with true to selfers having more times being questioned about their ability from revealed vulnerability. We lean towards Brene Brown’s thoughts more. It’s too hard to prevent spill between work and real life. We have but one real life. Authenticity is enriching. Though I also do tend more to being overtly blunt, but her, she lives it constantly in her serene nature. Some pics below by Phoebe.
And… another rough night. This time we tried to be a little more prepared. She sits on the commode top enhanced throne in the bathroom, I sit on the floor just outside on a cushion. Just the two of us, so bathroom door left open. Might as well make it bathroom visitation romance. Lights dimmed, jazz music plays, we talk about old younger college days going to Jazz Alley (does that place still exist?).
Her diet now swings between a rather liquid one and random requests of happy comfort foods.
Oh, then I scald my hand one night and despite sleepiness and encephalopathy, she just asks for my hand and blows on it.
~~~
At the end of the week, she awoke from her afternoon nap and her eyes look at mine for awhile. Her eyes jaundiced, yet calm. She then shared she had been resting, waking, and sleeping at a place that was serene. “Utterly serene. Peaceful and comfortable, a place with no troubles.” This is a signal. A suitable one I suppose, given her name means serene. She asks me to play music with her. We started with Eric Clapton’s Wonderful Tonight, then she sang along to Ed Sheeran’s Perfect together; then Death Cab for Cutie’s I Will Follow You Into The Dark and ended with Ed Sheeran’s How Would You Feel.
~~~
The view outside for her is the beginning of the spring blossoms. Eighteen years ago this week, she received her breast cancer diagnosis. I can’t describe what the place at the end of her journey will look like. I do know now that it is serene. And I miss her all the more already.
~~~
Death is our friend precisely because it brings us into absolute and passionate presence with all that is here, that is natural, that is love ~ Rilke