Arrangements: Funeral, Repast, Shiva, Donations (No Flowers, Please), and Housing

Kirby’s funeral will begin at 2 pm on Thursday, 2 February, graveside at Congressional Cemetery, 1801 E St. S.E., Washington, DC.

For anyone planning to come and possibly not familiar with Jewish funeral and burial customs you should be warned. The Jewish tradition dictates her coffin be the most plain pine box with no nails or metal fasteners. After it is lowered into the grave, anyone wishing to may shovel dirt into the grave , the community assisting in the burial.

Since Congressional is an old urban cemetery her grave will be excavated to twelve feet to allow a subsequent interment. Her coffin will be lowered by a backhoe. We think Kirby the engineer would approve.

After the funeral we would like to invite you to a potluck repast and Shiva service at St. Monica and St. James Parish Hall, 222 8th St. N.E., Washington, D.C.20002.

It is our hope that we can all eat and drink in celebration of our Kirby.

We will have the traditional afternoon service (Mincha) with recitation of the Mourner’s Kaddish at about 4:30 pm. If you would like to write, read, or share reminiscences, stories etc. etc. about Kirby we’ll have an “open mike” after the Mincha…

Judith is requesting for herself no hugs and no sympathy. It is all of that loving kindness that makes her weep, so please restrain.

Contributions/donations
We have all felt so hideously helpless through Kirby’s illness and suffering. But if you would like to make a contribution in her name to honor her truncated life here are some institutions that meant a lot to her:

AFS
One Whitehall Street, 2nd Floor
New York, NY 10004—2109
http://www.afsusa.org
212-479-1158

(Kirby spent six months in Ghana as an AFS exchange student her junior year of high school and ever after Africa “had a piece of my heart.” She totally believed in the AFS mission of building world peace through cultural exchange.)

Temple Micah Building Fund
2829 Wisconsin Avenue NW
Washington, DC 20007

http://www.templemicah.org/fundraising/donate-to-micah-fund/donate-fun

Temple Micah was her first and last spiritual home. It is the institution that shaped her deep Jewish identity.

Capen House
The Topsfield Historical Society
P.O.Box 323
Topsfield, Ma 01983
http://www.topsfieldhistory.org

(As many of you may, or may not, have known, Kirby’s surname of Capen was matrilineal: Judith’s surname. All Capens in the United States today are descended from a single Capen immigrant who arrived in the American colonies in the 1600s so if you ever meet anyone surnamed Capen: you’re meeting a distant relative of Kirby’s. Say hi for her.)

(Historic) Congressional Cemetery
1801 E Street SE
Washington, DC 20003-2417
http://www.congressionalcemetery.org/

(Kirby will be interred at the Historic Congressional Cemetery, blocks from where she grew up and an easy bike ride for her Capitol Hill community.)

Picker Engineering Program
Smith College
Ford Hall
100 Green Street
Northampton, MA 01063
(413) 585-7000
http://www.science.smith.edu/departments/Engin/

(Smith College was an extraordinary time for Kirby. Many of you probably knew she had a significant language-based learning disability that made academics incredibly difficult for her yet which, even by the fourth grade, she considered an integral part of herself, helping shape her. So integral, in fact, that when asked if she would wish it away she, always an old soul, said no. Math and science were disciplines she could conquer through hard work. Lots of it. Thus engineering, indeed requiring a lot of hard work. But Smith College, housing the first engineering program exclusively for women and from which she was one of the first graduating classes, was a home of her heart.)

Housing
If you are coming in from out of town and need a place to stay, a number of our friends and neighbors have offered lodging. Please let Robert know at Weinstein.48@gmail.com and he will see what he can do.

It’s Over

At 2:48 pm today. She flew away.

 

We love you all and are so grateful for all the love you have shown her and us during this horrible time.

But we would like to ask to be left absolutely alone until the funeral (which we anticipate for Thursday.)

No phone calls please. No food now: plan to bring food to her pot luck repast after the funeral. And bring memories and reminiscences.

Details to follow.

 

Dying

By Judith

When they sent her home to die, she was in apparent renal failure and we were told, “Hours or days.”

Then her kidneys came back, she stopped vomiting, her lips got some color. She seemed comfortable.

That was two weeks ago. The Hospice doc came by on Thursday and we asked her if maybe Kirby’s young bone marrow might be returning? She said that takes 30 to 60 days. Can’t not think about the !@#$%^&* cancer that grows so fast.

The Hospice doc said days or weeks.

She is pretty much asleep all the time, with rousings. The base level of pain IV pain med is now 10 times what it was in the hospital. She is vomiting again after a ten day break…

Our days (and nights) follow the medication schedule: 6 am, 9 am, 12 noon, 3 pm, 6 pm, 9 pm, and 12 midnight. The Hospice people keep adding meds but administering them is increasingly sporadic with the renewed vomiting…K continues to be a trouper: opening her mouth to receive liquid med.

R is a genius at getting her to eat a little. A slice of cucumber and a potato chip (!) yesterday. A couple of bites of Pomegranate Blueberry sherbet. A spoonful of five peas. But mostly her intake is liquid: juices and water.

We continue to hold her hand. Sit by her and stare at her and weep. Robert continues to clear and clean the kitchen counters. Judith continues to string cranes. Jean makes coffee and adheres to the many house rules (recycle early and often, keep the kitchen sink clear…)

And things change. Here’s what I wrote just six days ago:

  • Dying was the 800 gorilla in the room for the last four months. Now it is out   in the open and there is much weeping…
  • But I, who wept for four months in terror of that monkey, now look at her and think about the resurgence of her kidneys and her young bone marrow and her heart rate reduced to a normal speed and her excellent blood pressure and I can’t help but wonder. Maybe she needed a break from vomiting.
  • Maybe the last two chemo cycles with their four agents (irenotecan, taxol, carboplatin, and avastin actually delivered a punch to those !@#$%^&* tumors. Maybe she drowses 23 hours a day because she’s doped to the eyebrows…
  • But the docs, the nurses, and now the hospice people tell us (over and over) it’s different for everyone. Maybe. Don’t know.
  • So I must rely on my feelings (she’s just doesn’t SEEM like she’s dying, except for the fact of course she sleeps a lot. But maybe that’s the drugs…) and delusional thinking, which is much nicer than embracing death.

But now: the vomiting returned, to be whack-a-moled back down with increased drug doses. Hospice added another three drugs. She seems to be wandering in space and time, the occasional space-y comment her contribution to conversation.

The journey continues but we are all tiring.

Kodesh

By Robert

When my mother died in 1994, we sat Shiva for 6 days. At some point Owen, 5 years old, said to Joel’s mother on the phone, “Nanny died and we have been having a party ever since.”

This past weekend we were overwhelmed, in the best sort of way, by a flood of Kirby’s friends from all her walks of life. Burgundy Farm Country Day School first through third grade; CHDS, fourth through eighth grade; School Without Walls (SWW), high school; Smith, Engineering, Morrow House, Hillel, signing table; PowerCon; New York City; Capitol Hill; Temple Micah; and blood relatives. (With overlaps: Smith/NYC, CHDS/Capitol Hill, Temple Micah/Capitol Hill etc. etc.

Our neighbors opened their houses and hosted Kirby’s visitors, we filled beds on A Street and 9th Street. P, B and J played guitars and harp all day Saturday, filling the house with music. We ate, we drank, we washed dishes and cleaned up then started all over again. People came to Kirby’s bedside as individuals and in groups, singing to her, reading poetry to her, telling stories, reminiscing, showing her pictures, praying for her, crying, and sometimes just holding her hand as she appeared to sleep. We shared Shabbat dinner and Havdalah (end of Sabbath) services together, surrounding Kirby and embracing each other as we recited the prayers and performed the rituals.

As the Rabbi was leaving I shared my observation and concern that it was like an awake wake. Was this the right thing to be doing? He replied:

“The two words are
“Kodesh and chol
“This is the Havdalah prayer—we separate kodesh (holy) from chol (ordinary).
“The Hebrew word chol, besides meaning ordinary\secular\profane—also means sand. Sand is what flows right through your fingers. No grain of sand sticks to any other. This is chol—a totally unconnected world.
“Kodesh is the opposite—Kodesh is cleaving together—adhering—community. This is why the Hebrew word for marriage is Kiddushin—the married couple is bound together in the most unique way. Kodesh\holiness is in community.”

Kirby recently described herself as a networker, a connector, someone who brings others together. She has brought us all together in a community of holiness.

More Cranes

Cranes keep arriving. Now some have messages about how they might help her fly away… (one with her name on it was recently tucked into the Western Wall: maybe a direct line…)

The images of her in flight are so much better than any others associated with this current phase. Wings to fly with.

Cousin C included inscriptions on the wings “Shalom” and Psalm 91:4 “He will shelter you with his wings.”

This is additional to other notes on cranes:
“This is my first one.”
And MANY wishes for getting well.
Some signatures.
“Kirby rules, Love C—“
Lots of love on and in the cranes.

Cousin C’s shipment included a photo of 25 sand cranes in flight.

And the decorated cranes come: hand-drawn patterns on the paper, hearts, stars, abstract designs drawn on the cranes after folding.

The oldest crane arrived: made of salvaged granite (a very old stone) from the Community Forklift.

Yesterday, during Shabbat and with the house filled with her peer group of 20-somethings more cranes were folded and strung.

People who have struggled to master crane-folding have succeeded and are sending cranes along.

Sometimes cranes arrive strung (and no apologies are needed EVER for either cranes or stringing); sometimes they arrive as singletons with a card; and they’ve arrived by the boxful.

People ask how many there are:
We have counted the cranes several times, make a note of totals, lose the note…

I found one bag with this count on it:
19 oct
Kit 850
Front 1150
Entry vest 100
+ 50
(For a total of 2150 in October if my arithmetic serves)

The count as of yesterday, 22 January, Saturday:

Kit w/K 1900
Vestibule 100
Curtain 1700
Upstairs 1058
June 1000

totaling 5758 not counting unstrung cranes and not counting cranes given away: four strings so far to people at the chiropractor, two strings to Ro’s ailing granny, regular singletons to Z—-, a Nats crane to Rabbi D—even though he’s a Sox fan, strings and singletons to nurses and caregivers (a pink string to the nurses of the cancer floor at WHC in October, Breast Cancer Awareness month…) I don’t think the gifts of cranes diminishes their power on the magical thinking front, but probably enhances.

The birds began as magical thinking based on a children’s book and a Japanese tradition and have, I think, evolved into a form of therapy and a way to channel worry and hope for so very many people.

Where there’s life there’s hope. (And this in spite of the “no platitudes” rule around this house: we really need truth from this particular platitude.)

Maybe since we’ve gone so far beyond the requisite 1000 we have enough credit for the miracle. We’ll hope. This morning (Monday) Robert was musing about the next wish. What should it be?

Speedy recovery? (I thought I could deal with just “recovery” even if it wasn’t speedy.)
Able to walk again?
Cured; 100% cancer-free? (he thought that might be pushing the power of the wishes, asking for too much.)
Back to work? (In spite of the Calvinist work ethic that drives us in this house I thought work could be further down the list, below alive.)

We don’t have to wish for vomit-free: she’s now been SIX days without vomiting…

Anyway, I think we’ll work on the next wish.

Settling In to the Next/Current Phase (Thursday) and fyi to visitors…

by Judith

According to our count, this might be Phase/Stage 6 in this odyssey. (Not sure that’s the right word but WTF).

Now we’re settling into another phase, new routines: home hospice.

And we ARE settling in.

The pain is now running pretty typically at about a 3 on the 1 to 10 scale. (The 15s on the 1 to 10 scale were the worst.) We now have 60 hours without a vomit: the longest vomit-free period since mid-September.

Her kidneys have apparently returned to work after striking. (I say apparently since all we have to go on is urine production: which we have. Hurray.)

She seems comfortable but she is sleeping close to 24 hours a day, although today she had about an hour and a half of relatively awake time.

She actually ate a couple of bites of Cousin M’s decadent chocolate cake tonight while K— was here. K— said she’d have a sliver, too, since it seemed rude not to join her eating the cake.

I, myself, have graduated from magical thinking to full-fledged, possibly, delusional thinking. Kidneys back; young bone marrow: time for the miracle. (Cousin C’s note said, “We (Cousin C and two dear friends, also nurses) three and more are daily praying for a total cure…we all have seen miracles; we all have seen cures.”)

It’s about hope. Things look dark but we are treasuring all the moments. Someone is with her 24/7. We continue to cope: with the kindnesses of family, friends, and even strangers, which mostly makes us cry.

O is coming home tomorrow from Cincinnati. Friends coming from Vermont, Boston, NYC, Cancun, LA and Switzerland. Neighbors have opened their homes to host Kirby’s guests. When she was coming out of her most recent procedure at GW hospital to have her stents redone Kirby said, “This is happening really fast. I didn’t have a chance to say good bye…”, but it looks like she is getting that chance now, and is looking forward to it. She knows you are coming to see her.

Our darling Kirby rouses from where ever she is spending most of her time now and thanks people for coming. She thanks Robert and me regularly. And we thank you all. Cranes, prayers, visits, gin, food, caring, EVERYTHING…

Visitors fyi: you should know she drowses and drifts. Looks great (her eyebrows have come back, v. dark…) but mostly her mouth is open for breathing. All this mouth breathing has dried out her vocal cords, we postulate, so when she speaks it is in a high squeaky voice…she also drifts in and out of lucidity.

Sometimes, the Kirb we all know and love surfaces…

Sometimes she makes hacking phlegm-y noises; sometimes suddenly calls out.

If she knew, she might be embarrassed but we’re not, occupying the embarrassment free zone. Just love her.

Revised Visitor Policy

Earlier today Kirby’s pain was still not well controlled so she issued the “no visitor” edict.
It is now rescinded. She just wants everyone to know that she is not entertaining. She cannot be her usual caring style.
Don’t expect a lot of conversation from her but it’s a chance for a final, mostly one sided, set of reminiscences. A chance to tell her you love her.
Even when she’s drifting she can hear even though sometimes the output wires are a bit crossed. (She looks good. Great hair do. Nice filled out face, maybe attributable to the steroids. Still has those gorgeous big blue eyes.)
I’ve been telling her the tears are for her, not for us (we want her to think that WE will be ok. She needs not to worry about US). The tears are for the raw deal she got. For her being cheated. For the injustice of this happening to her. And for her pain, discomfort, losses…
We had a really excellent visit from Rabbi Dan who sang a bunch of those favorite, oft-heard Hebrew songs to her. Then JH visited and sang some more. Bring what you can: a song, a story, a hand holding. And we should probably keep most visits shortish: 30 minutes or less.
All of this remains work in progress and subject to change with no notice. It’s new to us all here: we’re amateurs so be patient with us, too.

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