BMT Day +197 Waning moments, movie titles, e-mails and discovery

Waning moments

It is excruciating to watch.  A loved one, declining in physical function and  mentally day by day.  From a vibrant, energetic, intelligent, intensely caring and fiercely independent woman.  Teri can only take a few steps.  She can’t sit up without support.  She now spends most of the time in bed. 

It bothers me that she continues to have so much suffering at the very end.  Unfortunately, Teri continues to have significant abdominal pain.  I call the palliative care physician and we up the narcotic doses.  She also has GI bleeding, from both the lower and upper ends this morning and is likely anemic. 

She has a vacant stare and her mind seems displaced.  Yet, she still has a few moments of marked lucidity.  She can still smile transiently when she spies Jack crawling towards her on the bed.  An occasional warm smile can break through her hollowed and glassy eyes.  Last night, her breathing was periodic.  She woke up hourly, uncomfortable, unsettled.   She tells me ‘you have a heart of gold’.   Will that be her last testament to me?

Rachel and I lie next to her today.  We sit by her bedside for hours or check on her every few minutes.

Movie themes

Teri and I are movie buffs.  Ben put 7 musicals on her new iPad and she watched them all, finishing Fiddler on the Roof at home after discharge.  She’s now too weak to watch anymore.

One of my musings is what her saga would be in movie titles. 

                                                  

Beauty and the Beast – Teri said no way, at least after I excised my scraggly ‘full’ beard from residency and fellowship … I was so proud that I could, as an Asian, grow one, that I couldn’t bear to shave it for years.

Million Dollar Baby – Teri has been a fighter, standing and taking too much punishment, but not yielding.  Indeed, her marrow is from a newborn babe.  And, her paid medical bills are nearing that dollar mark.

Love Story – in some ways it is a contemporary reprise of the theme of love and tragic leukemia some 41 years after Eric Segal’s novel replete with relapse, remission, superbug infection, bone marrow transplant, intractable viral infections, multiple complications – a dramatically medically prolonged demise – instead of a quick one in the neoplastic dark ages.

Mother Teresa documentary - just kidding.

E-mails from you

Mark Ray & Memee’s son (Hilo HI) – a personal cheer

T – totally different from anyone else I know

E – enthusiasm, energy and educating

R – relaxed, reassuring, resilience

I =  inspirational

Becky college friend (NJ) – to Rachel and Ben

Your mother was a girlfriend and spiritual sister to us, before she became your mother, and always stayed true to the right course to take.  She still knows best and we still follow her lead.

Catherine Asian Womyn’s Book Club – she remind us that Teri started:

-          Asian Womyn’s Book Club ? 15 years running

-          Annual summer picnic meeting for investment club

-          Annual 4^th of July swim party

Reiko Asian Womyn’s Club (Columbus, OH)

You have the gift of kindness.  You are not afraid to be different.  When I become critical of myself I can ask “what would Teri say?”

Jeanine (niece) San Diego, CA

I will miss your laugh and sense of humor, but most of all I will miss your love.  I still feel it every single day when I look around my house and see little notes or gifts that you have sent us over the years.  You were always so thoughtful and I am so glad my children got to know you and love you as much as I do.  You are love to me.

Rhonda gourmet club (Columbus, OH) – phone conversation yesterday

You are totally surrounded by love.  Only a special person like you could generate that much love.

Peg gourmet club (Columbus, OH) – stanzas of a poem

This journey through B's blog

Which in the end,

When you remove the medical technicalities

Has been a love story. [Not just a horrific cancer story. I guess that is true. A revelation. B]

A journey’s end

By gathering us together to celebrate you

Demonstrating strength, grace, and courage

To take the last steps alone

Yes secure in knowing that

Both your hope and love for us survived

Discovery

With your humorous anecdotes, poignant remembrances, penned poems and heart felt thoughts on how Teri affected you, many of you are helping me discover the many scented essences of Teri in a way that would otherwise be impossible for me.

                                                                                        

Thank you.

BMT Day +197 Thank yous

Thank yous and apologies

Both Teri and I would like to thank all of those who came to her “Awake Wake’.  

We would like to thank all of those who were invited but could only attend as they replied, in spirit. 

We would like to apologize to those we wanted to invite but couldn’t due to logistics and space.

We would like to apologize to those who wanted to call and visit both locally and from out of town.  Teri’s awake hours and functioning have declined rapidly making timing difficult.  She requested that we close her circle to the immediate family and a few visitors. 

More photos from the 'Awake Wake'

We share some more photos from her living ‘awake’ wake.

 Photo from the Celebration program – Sonny & Cher look, 1977 thereabouts 

Dean (Madison)

Becky (NJ), Lois (NY) Master of Ceremonies and sister Terri (CA)

Paul (Madison) – fellow peds resident with B, pianist, proposed home white coat ceremony

Rachel & Mom

Ben & Mom

Jack & Po Po (mother’s side grandmother)

Jack with inquiring gaze

Judy with daughter Meleah (IA), budding cello virtuoso

Phyllis (niece IA) – pianist, mother of Meleah budding piano virtuoso as well (but not a Tiger mother)

Ron – from Columbus, now Milwaukee, husband of Kari Suzuki teacher of Rachel and Ben

Manu – my new chief of peds GI here

Jack and Popo (maternal side g'mother)

Tony & Martha (Milwaukee) – have provided constant Chinese food for Teri, my father & I

Sharing a mother-daughter laugh

Becky (NJ) – college friend “Teri emitted feelings of love and truth as she talks to you, as if you were the only in the room.”

Donna from Froedtert – recounted how Teri’s singing outloud with her iPod while walking on the ward impacted the cancer ward culture

Memee (Madison) – B’s mentor, friend, 1^st pediatrician, called Teri ‘her 2^nd daughter’

Fresh flowers (for the first time in many moons) & mingling

Anna (Madison) spouse of Kok Peng – fellow peds resident “Teri was my role model”

B & Teri

Best friend Steve Master of White Coat Ceremony (Madison) – fellow peds resident

Jack participating by beating the drum

Teri puts white coat on Ben

Jody, Elena, Paul (Milwaukee) – brought natural (Jody) and freshly prepared food (Elena) for Teri... Elena and Teri put signs in their respective pediatric and hospital windows facing each other across the street:  "WBC 2.4"  "Teri kick butt"  "Jack is coming"  "Jack is here"
 

Memee and Ray – UW faculty mentors, great friends, and their kids/grandkids also great friends  Advice to Ben "Remember you don't know anything, you're starting out at the bottom of the totem pole - be humble!"

Siblings – Tony (CA), Anita (CA) and Terri Lin (CA) – tremendous help for over 8 weeks throughout her illness on site, bone marrow drives off site …

Mary and Steve (Madison) - 40+ vacations together pre-kids, with kids, post-kids ...

BMT Day +195 Winding down

Winding down

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.

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.

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.

Celebration of Teri’s Life

 Friday August 26th, 2011

  (Bridesmaid for Lois's wedding, age 30, pregnant with Rachel - one of the only pictures by herself.)

Teri viewing a collage of her life, family and friends

PROGRAM

Welcome – Lois (college classmate)

 White Coat Ceremony – Steve (best friend, fellow resident)

·        Introduction

·        Reading – Steve

·        Comments – Ben

·        Teri’s lesson – B 

·        Hippocratic Oath - Ben and physicians

·        Comments - Kok Peng (fellow resident above) and Ray Chun (mentor to B)

·        Putting on the White Coat – Teri and B

Love Story:  How We Met, Reading vows  – Teri and B

 “You’ve Got a Friend” by James Taylor – B (sang and played guitar at their wedding) and Group (Ruthanne & Kok Peng)

  
Sharing stores with Teri (Memee, mentor and Rachel and Ben's 1st pediatrician)

 Musical Interlude - Meleah (cello) accompanied by mother Phyllis (Teri's niece)

 Sharing more stories with Teri  (Mary, spouse of Steve)

 “Take My Hand Precious Lord”, “Amazing Grace”  Phyllis (piano, voice)

Musical Selections from “Fiddler on the Roof” “Matchmaker, matchmaker”, “Sunrise, Sunset - Paul Grossberg (fellow resident)

 Closing - Prayer Psalm 23 – Lois

 Other pictures

 Becky (NJ), Lois (NY), Paul (WI), John (Rachel's husband)

Sandy (neighbor)

4 generations of Li's - Chu-tsing (91), Jack and Rachel

S

Note:

We somehow pulled this 'Awake Wake' together with the help of Steve, Kok Peng, Paul, and Lois in a 24 hour period.  As we watched Teri's energy level decline, we decided to move it from Sunday morning to Friday evening in order that she be as present as possible.  Despite the extremely short notice, forty-four family and close friends attended.

Because Ben returned home and was unable to participate in his white coat ceremony in Michigan, Paul suggested we do a personalized one here that Teri could attend (as she had intended to do).  The family and Teri were all profoundly moved by this suggestion.  It worked out beautifully and Teri and I got to put the white coat on him!  Interestingly, there were 9 faculty physicians (including my former chief Colin and current one Manu) here who were able to read the Hippocratic oath along with Ben ... that may have been more than attended the formal ceremony in Michigan.

It was a moving event full of personal warmth, heart warming memories, life's lessons, and cracking voices and shed tears.  Nineteen family and friends shared their recollections.  I learned even more about how Teri had touched others' lives through being uniquely 'present' for them, for valuing relationships above all else, for loving all kids (especially babies) not only her own, for her fearlessness and strength in the face of authority and cancer, and for being totally unconditionally accepting of others, and for having an infectious joie de vivre and sense of fun.  We know many of you were here in spirit with us.  Thank you the many thoughts that you have expressed in writing that reflect her impact on your lives.  We have read them to her.  She appreciates and is overwhelmed by them.

BMT Day +191 More goodbyes

 Wednesday was another day of goodbyes.

Lois – a college classmate from NY – recorded the events on her last day in the Froedtert Hospital below.

Many hospital staff came to Teri’s room to say goodbye and encourage her, but who in turn were encouraged by her.  After the fourth visitor I realized that I was witnessing a very special interaction between Teri & her “caretakers” in how they nurtured each other and I began to take notes.

Goodbyes from hospital staff

1. Don the nurse came in at 6:30 am to help her to the bathroom, etc. and to wish her well.  He specifically wanted to say goodbye to her before he finished his shift.  Teri asked about his fiancé and finding the right one, and you could see that they connected as friends as well.  He said that Teri was blessed to have found her soulmate.  She wished him well.

2. Michael the PA’s first words to Teri was that she had fought the ‘good fight’ and that he has seen many, many transplant patients, but none that fought like her.  He told her he admired her courage and she told him to continue his good work in caring for others.

3. Teri & I started to watch “Fiddler on the Roof” when Dr. W. (psychology) & Dr. M. (palliative care) asked how Teri was doing.  She said that she was in a good place.  Dr. M. said that he remembered that Teri’s first words to him were “Get me home!” and said “Home is a good place to be”.  Dr. W. said that she uses the beginning of “Fiddler on the Roof” to illustrate that each person’s “schemes, plans, ideals, traditions” determine their behaviors.  Teri thanked each for their outstanding care, for making her cancer life more bearable. Dr. M. thanked her for her kind and warm words, which doctors don’t hear too often.

4. Sandy, social worker, knew that Teri was special when they first met and gave Teri a plaque that epitomized her: “Courage is found in small quiet voices”.  Comparing Teri to her own mother, she said that Teri had a “people’s soul” that connects to everyone she encounters.  Sandy said was sorry that Teri couldn’t continue, but that she had lived a good life, raising 2 wonderful children as a testament.  Most say that “the more you live life, the harder it is to let go”, but Sandy differed, and felt that people who don’t live their lives well, have regrets and want more time to accomplish things they didn’t do.  But Teri embraced life.  Sandy thanked her for letting her in.  Teri said she appreciated the great work that Sandy did and to continue on.

5. Rabbi M. said that when people first meet him, sometimes he doesn’t get a positive response.  But Teri always was so warm and welcoming that he felt accepted.  He wanted to know why she decided to have palliative care.

Her rationale

She explained that it was such a prolonged journey, jumping from one misery to another.  It was not an easy decision, but one she had been thinking about thought for a while.  She was very tired.  The team had tried all different approaches, but each seemed either not to work or lead to another complication.  At the end of 18 months, she didn’t seem to be getting better.  She didn’t have any quality of life.  She was totally dependent on machines and transfusions.

Rabbi M. wanted to know what he could do to help bring her the peace she sought.  Noting that she gave it her all, he said he admired her strength and fortitude.  Teri said that she didn’t like to talk about herself. 

The rabbi shared a story from “Chicken Soup for the Soul’ about a person who said that “I would like to have my wake when I’m alive.”  All of a sudden an epiphany.  Teri said she wanted to have an “Awake Wake” [coined by Lois] and invite family and close friends to celebrate Teri’s life with her.  Telling another story about Pres. Truman planning his funeral, said ‘It sounds so wonderful, I wish I could be there.”  We have scheduled that impromptu event on Friday.

He said “God blessed you with a good, sweet, nurturing soul, the love of a good husband and children and grandson, Jack.  I admire your fight, your love of life and how you embrace it to engender more life.”  He sang Psalm 92 in Yiddish and quoted in English: “it is good to praise the Lord and make music to your name, O Most High, to proclaim your love in the morning and your faithfulness at night.”

6. Dr. B., oncologist, said that Teri was radiating peace and comfort, for the first time in many months She said that she had courage to face each disease, intervention and complication head on, never backing off, shaking her fist, yet always joyful, in her journey, showing signs of grace and strength.  She said Teri had touched many lives in very significant ways.  She said it was a privilege and honor to get to know Teri, that she will treasure her goodness, gentleness, deep honor, that she will hold her in her heart.

Addressing B, she said she rarely sees a man so deeply in love with his wife in all the best ways, respectful, struggling together, a perfect match (Teri said like in “Fiddler” song “Matchmaker, Matchmaker”).  She asked how B & Teri met, which Teri described in detail, even their wedding day.  She gives B a hug.  

B also said that at MCW, as a staff member, he thought he could advocate for the best care for Teri, but instead Teri, in her own unique connected approach had opened many doors for herself, bonding with staff at every level.  Teri said that she developed a whole new family.  Dr. B. said, “Godspeed, I wish you love, laughter, tears with people you love.  Every chance encounter you get to know and care about others and they in turn care about you.  Spirituality is connectedness – you exemplify that in the way you reach out to others.”

7. Dr. R., attending physician, said that he had observed Teri’s entire course and where she is now, and understands that her decision is right for her.  While others may wonder why she isn’t still pushing onward, she needs to be where she wants to be.  He said that it was an honor to know and work with her.  He said that he loves his job because of people like her.  Teri encourages him to keep up the great effort.

8. Two of the environmental services ladies came in to say good bye and that they will miss her

 As we wheeled Teri through the length of the ward, we were swept through by a torrent of tears from environmental services, technicians, and nurses.

What an intense day of farewells.

Later, after returning home from the Froedtert Hospital for the last time, grandson Jack, Rachel, John. arrive.

Brother Tony and sister Terri arrive from Hayward on Wed and Thu.  Terri, Teri and Tony above.