One day at a time, literally.
Teri is remarkably lucid, given her rising blood level of waste products that she can’t excrete without kidneys or hemodialysis.
Teri is winding down. Her energy level is low, she sleeps much of the day. Her schedule is simple as she spends most of the time in bed except for breakfast and supper. In the morning, it takes me more than an hour to sponge bathe her, rewrap her legs, and dress her.
She walks more slowly with greater effort. She eats very small amounts of food. Despite making anything she wants, e.g. soba, bowtie pasta, congee with 1000 year old eggs, nothing tastes good. We reduce her dietary NaCl and KCl since she no longer has kidneys to eliminate salts – watermelon juice is one casualty. She is having more bleeding from her nose, GI tract, kidneys and bladder due to dysfunctional platelets. Her pain is reasonably well controlled on two narcotics, fentanyl and oxycodone.
Every time she walks, she gazes intently at her shelves of collected children’s books etc., as if for the last time. It stimulates her to think of something. She reminds Rachel of gifts that she wants to give. She instructs Rachel to take out all of her rings and describes the precise origin and history of each.
Teri asks for Rachel and Ben to come in to bed with her, one on each side. They talk, cry, cuddle. It is touching to see them intertwined. Teri is the calm one, dispensing love and last minute advice.
She reaches out to me and caresses me gently. I feel weakness of her body but the strength of her intent. We replay our timeworn intimate game, “I love you more.” “No, I love you more.”
We read cards and e-mails to her. She doesn’t have energy to read the blog.
I can tell she is tired to her core.
I can tell she is tired to her core.
Family and Friends
Tony left on Saturday. Terri flew on Sunday, Anita and Henry drove on Sunday. Phyllis (niece), Judy and Meleah left on Saturday.
Rachel, John and little Jack are staying! Jack crawls, cruises and pulls on anything with a handle or pushes any button. He takes watching. He can imitate us and do ‘gongxi’ (two hands clasped moving up and down – meaning in Chinese ‘congratulations’) and downward dog type yoga burrowing his head down and butt held up high. His constant good nature and wide smile keeps Teri going.
David, son of Steve and Mary, came to see Teri. He's a 4th year medical student.
David, son of Steve and Mary, came to see Teri. He's a 4th year medical student.
Lois (college friend) stayed. In between cooking and shopping, she redoes her Chinese Planning Council Queens School-Aged Day Care (200 students) budget based on 3.6% reduction in NYC funding. What everyone has to juggle. Winnie flew in from SF on Sunday and brings culinary creativity that included soba with seaweed and shrimp and Japanese cold sesame spinach. Elena brings cheesecake.
More on her rationale
Teri explained to her sister that although she had considered ending therapy for some time, the tipping point was dialysis.
I asked her if the major factor for stopping was constant pain, disability and loss of autonomy, or the effect on the family, she told me today that it was 99% pain and discomfort.
A sweet note from Liz (daughter of Cindy and John in Columbus)
She thanks Teri for many things including: 1) for teaching her to use chopsticks at age 7 by using training chopsticks that has led to a lifelong obsession with using chopsticks at every meal, American or Asian, 2) for teaching her about potstickers (Teri’s signature comfort food) recalling the many trays of individually (‘yet different like snowflakes’) wrapped dumplings atop our kitchen table, and 3) for teaching her that strength can sometimes mean giving in but not giving up.
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