Celebrate Teri's life - open house 9/17

Come celebrate Teri’s life – her open house

Saturday, September 17^th, 2011

4 pm to 7 pm

Appetizers and dessert, pictures and paintings

311 E. Erie #318 (Downtown Milwaukee – 3^rd ward)

Phone:  414.763.9447

No formal program

No black, colors only

No shoes – can bring sox or slippers

Be prepared to write a comment

Help us extend the invitation to:

Neighbors, Milwaukee Montessori, Children’s Hosp Volunteers, Froedtert BMT Staff, Froedtert 4NT Staff, Life Clinic, Gan Bei Club, Cancer Center Lab, Day Hospital Staff, BMT Physicians, Mandel, Milwaukee Art Museum, MCW Pediatric GI staff, Training Directors, Asian Pacific American Medical Studnet Assoc, Organization of Chinese Americans, Cardinal Bernadine School (Chicago), Unitarian Church, UW Madison Pediatrics

Vestiges and messages … Jack is changing … Poem & song ... Cards & flowers

Teri’s vestiges and messages

I have decided to remove all the medical paraphernalia but leave Teri’s belongings and her many signs up for the time being.  They are comforting and surprising.

I leave them with you as a glimpse into her microcosm.  Family oriented.  Kids oriented.  Courageous.  Inspirational.  Supportive. Organized.  Committed to rehabilitation and getting through this. 

Bedroom

Picture:       Teri’s siblings, nieces, nephews and their spouses and children

Our immediate family at the BMT lounge

Tony’s (brother) entire family

Anita (sister) with the two of us in hospital

Jack as newborn & at 7 months  ‘PoPo you are my sunshine!’

Picture of a seagull and prayer from Terri Lin (sister)

12 woodcut block prints of the Chinese Zodiac by Tomie Arai, artist spouse of Legan

Teri’s notes:  B put in night time eyedrops, massage feet

In bed exercises: 1) tummy tuck, exhale & lift up tummy 10X3,  2) leg lifts and hold 10X3,  3) squeeze bladder area and hold 10 seconds

Thanks to Jens letter, we are going to clarify some things about the “Awake Wake”  The idea came from a story from Chicken Soup for the Soul when  I said I wish [I could hear] what people say about me at my wake.  Therefore the name came about from Lois, Teri’s matron of Honor, to have an event called an “Awake Wake”.

Above Teri’s head:  Refluah Shlemah = Complete Recovery (from Becca)

Bathroom

Picture:       8X10 of Jack with a huge smile at 7 months

Calendar:    Entries up through 8/31 (Lois leaves), 2 days before she died

Note:          Saturday 18^th June 2010  Epiphany:  I will be alright.  Love surrounds me and music fills my ears

Cartoon:      A monster “You don’t own me”

Kitchen

Pictures:      4 pictures of Rachel’s baby shower in Columbus with Rachel and

Mom, Gourmet Club, Asian Womyn’s Book Club, Columbus International Program

Mia, Teri’s Montessori tutee in Chicago

Ben with 2^nd cousin Darien

Drawings:    From Kyler, Sandy’s grandson

Note:           Tai Chi, walk, stretch calves, meditate, yoga, cut photos

Dialysis:     List for 2^nd to last:  2 pillows, 2 white blankets, iPad, cell phone, apple with peanut butter

Froedtert:  Contact numbers for clinic
Nutrition:   Allogeneic bone marrow transplant guidelines for nutrition at home

Recliner

Many cards

Instructions on turning on TV

Exercises:    In chair arm lifts, pull ups balance and leg strength, in bed Leg Lifts

Desk

Many pictures of children – her own, friends’ children, former students, bluebird, her mother and my mother

Pictures:      Kill Bill Cancer (Uma Thurmond)

                   Ben climbing on a snowy incline in Yosemite

Invictus:      “I am the captain of my fate, I am the master of my soul.”

Birth:           Jack Li Cullivan born October 29, 2010

Counter

Note:           B set up 2 hours every Sunday to study for boards

Front door

Pictures:      8X10 Jack at six weeks, smiling

                   8X10 Jack at 7 months, smiling ‘Hi Po Po & Gong Gong, I love you’

Jack is changing

While crawling, climbing, reaching, pulling Jack was here last week, he broke new developmental ground.

He ate for the first time:  strawberries, tofu, stick rice, soba noodles and 1000 year old Chinese eggs (pi dan).

He learned gong xi (congratulations) hands clasped shaking them up and down – he will even do it while skyping with me.  He also learned a hand rolling over hand motion (like football referee illegal motion) always when he has a broad smile since he finds it so much fun to get everyone else acting like monkeys.

Rachel’s going to teach him some sign language.  I think he’s ready.

Poem for B and song for Teri

You can shed tears that she is gone

Or you can smile because she has lived.

You can close your eyes and pray that she’ll come back

Or you can open your eyes and see all she’s left.

Your heart can be empty because you can’t see her

Or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday

Or you can be happy for tomorrow because of yesterday

You can remember her and only that she’s gone

Or you can cherish her memory and let it live on.

You can cry and close your mind, be empty and turn your back

Or you can do what she’d want:  smile open your eyes, love and go on.

- David Harkins (sent by Susan & A.J. Columbus)

Something in the way she moves

There’s something in the way she moves

Or looks my way or calls my name

That seems to leave this troubled world behind

And if I’m feeling down and blue

Or troubled by some foolish game

She always seems to make me change my mind

It isn’t what she’s got to say

Or how she thinks or where she’s been

To me the words are nice the way they sound

I like to hear them best that way

It doesn’t matter what they mean

She says them mostly just to calm me down

Refrain

And I feel fine any time she’s around me now

She’s around me now, just about all the time

And if I’m well you can tell she’s been with me now,

She’s been with me now, quite a long, long time,

And I feel fine.

Every now and then the things I lean on lose their meaning

And I find myself careening

Into places where I shouldn’t let me go

She has the power to go where no one can find me

And to silently remind me

Of the happiness and good times that I know

- James Taylor  (I was listening to this yesterday and it captures us.)


Friends and flowers

Friends stop by.  I continue to find useful places for Teri’s excess supplies – Milwaukee Center for Independence.  Harriet and Colin bring a complete gourmet meal of figs/pine nuts/carmelized onion pizza appetizer, miso wild black cod (prime rib of fish), and chocolate cake + Graeters raspberry/chocolate.  Cholesterol city.

Flowers and cards come in thoughtful droves.  Teri would have loved them.  I notice they are addressed to me and the family.  

From the top:  Paul and Robert (neighbors), Grace, Jim & Mia; (Chicago);  Biblio's (colleagues), GI & Hepatology (colleagues) .

By the numbers, the kids and I

Teri hospital, hospital-free, and good days.

Pardon my numbers.

Teri’s illness from diagnosis to death lasted 570 days or nearly 19 months.  She was hospitalized for 253 (8½ months) and treated at the Day Hospital, BMT Clinic, lab or in Hospice Care for 111 days (nearly 4 months).  That is, on average she rested at home only 1 out of 3 full days.  I estimate that she only had 54 ‘good days’ not in the hospital or Day Hospital, relatively pain free, feeling and acting like her usual self.  Of the 199 days following transplant, I believe she only had 3 good days.

Teri talked consistently about her poor quality of life post-transplant.  But it is also apparent that she had poor quantity of life as well.

Rachel

Rachel spent a lot of time with talking with her Mom, talking, aiding and massaging her and becoming even closer.  She felt it very important that she be here during Mom’s final days. When queried, Teri reassured Rachel that she already is a great mom.  Rachel provided solace to me in Teri’s final hours. 

Rachel follows in Teri organized foot steps.  While she was here, she juggled Jack (still breast feeds some), shopped and prepared our family meals, cleaned and organized Mom’s belongings, demedicalized our home, meanwhile kept on her training schedule for an upcoming half marathon. 

For those unfamiliar with her aerobic exploits, she has completed 4 Ironwoman triathlons (2.4 mile swim, 112 mile bike and 26.2 mile run), dropping an hour off her personal best last time.  So this half marathon is a jog in the park.

Ben

Although Ben did not return in time to see his Mom one last time, he had a chance to say goodbye the previous weekend when Teri was still coherent.  Perhaps that was better.

Interestingly, he has absorbed more of his Mom’s life philosophy than Rachel or I.  He says it is in part due to how much time they spent together working through his childhood issues with alopecia totalis.  When we talk, he asks, what would Mom advise?  He talks to me specifically about ‘letting go’.  He asks me, ‘what do you want to do next?’  Given my single minded focus on Teri for 19 months and infrequent feeling about a positive outcome, I draw a blank.  However, it is warm feeling to be counseled and challenged by a mature progeny. 

He studied very intensely throughout the weekend.  He asked me to quiz him on the chemical structures of the 20 amino acids.  He does well.  He says he already feels behind … it is week one.  I say that is a permanent state of feeling in school but one that he will bear well.

B

I am trying to grieve and deal with the practical aftermath.  Today I saw the psychologist that both Teri and I started with when she first became ill.  I an relieved that the guilty feelings of relief and a taste of freedom after 19 months (taking a walk with Ben) are normal.  She says that level of stress was so intense that I became numb in order to cope with the many vicissitudes.  I acknowledge it.  So many nights of not knowing whether she would survive.  So many months of unrelenting cascade or complications like crashing waves with short-lived lulls in the troughs.  Living on the edge.  So I do feel some relief.

I deliver about $6,000 of unused medications to the pharmacy for destruction (especially posaconazole).  Once medications have left the pharmacy, by law it can no longer can be used, even if sealed and unopened.  Some police departments will also accept and destroy unused medications, especially narcotics which the pharmacies cannot accept.

I pass by some of Teri’s favorite people in the Cancer Center the lobby receptionist, BMT Clinic receptionist, and the lab technician who took extra special care of Teri’s PICC line and skin around it.  We both tear up and give a hug.  One asks for a picture taken of her together with Teri.

I was driving watching the clouds in a sea of blue, something Teri would do, and I began to sob spontaneously.

Aftermath

Calls and e-mails arrive from family, friends and colleagues, local, national and international.

Flowers arrive.  One from our neighbor was delivered by Teri’s friend-owner in the neighborhood, who didn’t know until the order came.  She was balling and speechless at the door.

The obituary written by Rachel appeared in the Sunday paper.

http://www.borgwardtfuneral.com/dm20/en_US/locations/48/4857/index.page

The house is suffused with Teri’s colors and objects.  I see them everywhere. 

I discover Teri’s notes every where, even inside drawers, to remind me to do something.  I’m overcome when Rachel finds a sweater Teri knitted for Ben’s first born.  I’m overcome again when I find a present for Rachel and John’s anniversary in December 2011.

Jack leaves his finger prints all over the doors, appliances and baby footprints all over floors.

Rachel departs today and it is sad to see all that positive energy drive away.  We are planning my next visit for Jack’s birthday.

We do several things in Teri’s memory.

- Rachel, John, Ben and I play Quiddler Teri’s recent favorite game, a card-based cross between boggle and scrabble.

- Ben & I go for a 25 mile bike ride.  It is my usual Sunday morning moving meditation.  It is a beautiful morning.  The sky is clear, the air crisp and the waters of Lack Michigan almost Caribbean azure.  We meditate at a Grant Park beach.

- I take my father and Ben for a lobster dinner at St. Paul’s seafood market, Teri’s favorite meal, and one which I took many of our family supporters to. 

Raindrops from Teri

I feel Teri’s continued presence. 

Neighbors and friends have reassured me I’m not crazy and related personal stories of similar experiences with a lost loved one.  That is helpful.

BMT Day +199 Teri’s transition

Teri’s transition

By now, many of you know.

Our Teri died shortly before 2 am this morning in her own bed, in her special condo, on her own terms. 

She was not conscious and not in pain.  She tried to get a drink but spilled it on her self.  I had planned to stay up repeatedly the last three nights, but she seemed to stabilize her breathing pattern, so I tried to sleep. 

Beforehand, I have a long talk to her.  Then, I fall asleep.  Thinking that she would hold on until Ben returned this evening.  Mostly we have said what needed to be said at a time when she was responsive.

Rachel and I together and separately touch her and stroke her body gently.  We also hold each other.  We know it is the inexorable outcome but still cannot believe it has come to be. 

The hospice nurse comes to pronounce her and the funeral home arrives afterwards to remove her body.  I walk with her enshrouded body to their vehicle.

Before they leave, they make the bed as if to remove all impressions of her bed bound form.  It shocks me and seems to instantaneously erase the hospital environment that I’ve gotten so accustomed to.  But then the wheel chair, commode, medications, dressing supplies … are still in evidence.

It is empty without her.

She is at peace.  She is no longer suffering.  She has gone to a good place.

We are not ready.

Two pictures

Rachel picked out two pictures of her mother that we want to leave you with. 

The first is a pre-leukemia picture, taken at Rachel's wedding two months before she was diagnosed, and is the most recent photo from her well period,  It depicts her penchant for spontaneous fun where she was showing how to juggle three clementines at once.  She then got us all to play roulette together as a family and we beat the house!

.

The second is a post-leukemia photograph taken at Rachel and John’s place in Columbus, after achieving her second remission, a mere 10 aays or so before her transplant.  It shows her feeling good, acting herself, full of positive energy, and holding her beloved Jack who was #1 on her hit parade.

At some point, for those who could not attend the A-wake, we would like to create a photomontage of Teri’s life.

I call many family and friends.  Many call me.  I choke up repeatedly.  I tell my father who was very philosophical and says, “We are alone.”  Which is not true true, we have Jack …

I exercise briefly.

I drive to the funeral home and sign papers for her cremation.

Rachel, John, Jack and I go for a long walk on the River Walk along the Milwaukee River.

Rachel and I sort and organize five large bags of unused medical supplies, from depends, drugs, IV supplies, dressings, wraps … trying to find homes for these extras.  We return the oxygen generator, oxygen tank, IV pump, wheel chair, and commode to the supplier.

Ben arrives home.  He is doing OK.

Manu and Anjali bring an Indian supper of lentils, paneer, shrimp and cucumber/yogurt.  We have rhubarb-strawberry pie, Teri’s favorite, with vanilla ice cream. 

Raindrops from Teri

You may think I’m nuts.

After a short sleep I awake to find the sun bright in the east, the skies a deep hue of blue with a few scattered clouds, none overhead. 

All of a sudden, I felt sprinkling.  It continues.  I look for someone watering flowers on the balcony above me.  No one.

Teri and I are crazy about water, swimming in it every day in Columbus, living adjacent to the Milwaukee River, and snorkeling in it wherever possible in Caribbean locales. 

I believe Teri is sprinkling droplets on me to let me know she is up there, doing all right. 

It reminds me a little bit of Black Elk, the Ogala Sioux holy man, who summons a solitary rain cloud to drench him as he speaks to the heavens.  Not exactly, but good enough for me.

BMT Day +198 Asleep

Asleep

Today, Teri is mostly asleep, but arousable.  She asks to sit up and does so briefly with Rachel and I supporting her.  We have to change her in bed.  Unfortunately, she is passing a lot of blood.  She does not respond to our queries about whether she is having pain.  The hospice nurse and aide ask us to respond to nonverbal clues and to administer pain medicine whenever she grimaces or moans.  We increase the doses of narcotics.  We are learning the ropes in this new world.

Teri’s bright spots today were:  1) a brief smile when Jack climbed into our bed,  2) one smile of recognition to me,  and  3) recognition and hug for Dr. H. who came to see her. 

Teri had asked me to call Dr. H. to see if he would come so that she could say goodbye.  He originally planned to come several nights ago, but I had just put her to sleep early as she requested.  In hindsight, it would have been better for him to come then, since she could still carry on a conversation.

Dr. H. assessed her briefly and confirmed that she was severely uremic (accumulation of urea nitrogen from lack of renal excretion) that lead to a acidosis (too much acid) and Kussmaul (periodic) breathing.  Given the continuation of bleeding from the GI tract (probably uremic gastritis), her hemoglobin (red cells count) was probably in the range of 5-6 (40% of normal). 

I show Dr. H. the photographic collage of her pre-leukemia life, her youth, her family, her friends, her adventures, her travels.  I tell him about the living wake that he couldn’t make and what others said about Teri.  He tells me he saw those qualities in her.  I tell him that one of the few upsides of her cancer was acquiring a new BMT family, as much as she hated being in the hospital.  He said that family feeling was reciprocated and that everywhere staff ask him about Teri’s final progress.

We rehashed the course of her illness.  Teri was cured of cancer!  She kicked butt, successfully!  But, she couldn’t tolerate the mismatched transplant with a marginal number of stem cells that led to a marginal numbers of lymphocytes (also insufficiently armed and targeted) to fight off the viruses.  She developed innumerable complications, as Dr. H. acknowledged and Teri herself realized, and simply couldn’t get over the hump and regain her energy, semblance of her former physical self, and her moxie.  He reiterated, “She had one of the toughest cases I’ve ever encountered.”

Rachel, John and baby Jack

It has been great to have all three here.  Jack has added to the cycle of life.  He has provided his effervescent smile and boundless energy to the laden emotional proceedings.  He has bonded with his great grand pa over a 90 year age span.  Rachel has contributed her super organizational skills and judgment to meals, to who visits, to what is appropriate.  Today she was vacuuming with Jack in the front pack while organizing the kitchen and doing laundry.  She has taken the opportunity to communicate the important things to Teri that kids either don’t have a chance or don’t choose to.  John has been a rock amidst the turmoil providing low key support and balance to the household.

                                                                          

Donna brought freshly made sorbet, Elena brought pizza and Sandy sat with Teri while we ate.  

My father stood and addressed Teri but didn't get a response.

Hospice

Choosing hospice wasn’t a facile choice but one which Teri made thoughtfully and courageously.  As I watch to reality of which she is now experiencing, it is not an easy or as quick a course to traverse as one might imagine.  As Rachel and I try to provide support for mobility, bodily function, pain management and especially, watching the rapid loss of functional capacity and of the spouse and mother that we knew ... it is not easy for us either.  But we must support Teri in her decision, as hard as that is, and relieve her discomfort in her final days. 

Somehow, I find solace in sharing this vigil.

Leaving comments for Teri

Hi--this is Jennifer, Teri's niece.  Uncle B asked me to help explain how folks can leave comments on this blog, so here are some detailed instructions.

First, you need to click on the "comments" link that follows the end of a post (it is highlighted in red and indicates how many people have left a comment).  When you click on it, a white "Post a Comment" box pops up and you can write your comment.  Then, you need to select a profile--who you will "Comment as"-- there is a pull-down menu, indicated by two small arrows, one going up and one going down.  The very last one is "anonymous"--which means you don't have to have any of the accounts listed in the pull down menu to leave a comment--you can simply choose "anonymous."  After you click "post comment" another box asking you to enter in a series of letters will appear--this prevents spammers from infiltrating the comment sections of the blog.

Hopefully this is clear--but if someone is running into problems, feel free to email me at hojennifer@earthlink.net.  Finally, I thought I'd leave a photo of me and my aunt Teri from the early, early 70s--it's one of my favorite photos.