Donna's Eulogy, with Messages from Martha and Mhizha

Sixteen years ago I went to work in Zimbabwe for a few months on a strategic plan for the Zimbabwe YMCA. Valjean decided it would be a great adventure to visit me for six weeks. In typical Valjean fashion she set about networking to cook up some work she could do in Zimbabwe so she could write off the trip as a business expense. Her plan, as it emerged, was to help me write the plan for the Zimbabwe YMCA and to record the stories of a Shona storyteller and musician (through whom she meet her African family) with the idea that someday she might turn them into children’s books.

I had been in Zimbabwe for a couple of months when Valjean arrived. I had had some time to process the great beauty and many contradictions of Africa and Africans. Valjean stayed in my apartment with me and we shared a bedroom. At night I would be exhausted from working all day and she would want to talk well into the night, processing what she had experienced that day. About a week after she arrived, I was just drifting off to sleep and Valjean bounded up in bed, turned on the light, flung her arms open and yelled “Zimbabwe exclamation point.” “Zimbabwe exclamation point what?” I asked. She replied that was the name of the store she could open on Milwaukee Avenue to sell the things Zimbabweans were making to help them make a decent living.

Although Valjean never opened Zimbabwe! she also never stopped scheming of ways to help the people she met in Zimbabwe. I wasn’t a bit surprised when Giudi found a container of Zimbabwean crafts in Valjean’s garage that she had yet to sell.

All of us know of her African family and the money she raised to help support them. Martha Timbenawo, the mother of her African family, has asked me to read this to you on her behalf.

Firstly I greet you all family and friends of aunty Val. I’m Martha. I knew aunty Val for about 12 years. Aunty took me as her daughter, she always said you are my African daughter, l took aunty as my mother I have really lost a mother and a good friend. Aunty Val loved me and my family very much, sometimes when aunty Val comes I asked myself that aunty Val travelling half way across the world to see us you know she really had true love, when she came to Zimbabwe we lived with her in Mbare its a high density suburb I thought she would say I want to stay in a hotel but she would say I will stay with you here in this house.

What we ate she ate also, she did not even complain aunty Val was full of love. I’m going to miss her. I’ve a daughter and aunty gave her name, she is 9 she will be turning 10 on the 20 of August, she likes to read and write stories she is following aunty footsteps please remember that there’s young Valjean in Zimbabwe.

I want to take this opportunity to thank you all for the support you gave to aunty Val. I really thank you all. I love you all from the bottom of my heart.

The former director of the Zimbabwe YMCA, Mhizha Edmund Chifamba, who became Valjean’s good friend and Shona (the main tribal language in Zimbabwe) teacher wrote this:

“I met Valjean through you almost 16 years ago. Both of you became my very dear friends. Over the years Valjean was always there for me. When I arrived in Chicago from Canada, Valjean was there at the airport to meet me. When I looked for jobs, she helped me with her writing skills to put my resume together, she would say "You are writing for Americans baby." She taught me how to live alone in the West and to navigate my life out of loneliness. The most important thing she taught me was how to network and to be positive. This was always mired in humor, quick wittedness and kindness. Our friendship developed over the years to a level where she counseled me on life issues in America and I guided her on how to be part of her African family. We shared how to read in between lines about American politics and she always consulted me on African political and cultural issues. She was an avid reader and I emulated her for this attribute. We liked some of the same music and good food. I relied on her as a friend. I miss her a lot. I will not be able in words to thank her sufficiently for her friendship, except to say may her soul rest in peace, until we meet again. Valjean learnt quickly one of the Shona profound sayings, "Ndiyani anoziva nzira dzaMwari?" - "Who knows God's ways, but God Himself ?" She repeated this quite often. I know some of what She meant.”

Valjean’s commitment was unwavering and her love felt intensely half way around the world. In addition to this commitment and love and our travel adventures large and small, when I think of Valjean I think of all the great dinners we shared together. From stir-fried caterpillars in Africa to countless dinners as neighbors in Chicago. Many were in restaurants, but the best was when she would call and tell me she had decided to cook. I would arrive at her place tired after work to delicious smells and I would feel so grateful and well taken care of.

I think of her commitment to make the world a better place – from her days as a “video revolutionary” to her work with Freeze Frame to the work she did with the organization I work for, the Delta Institute. Valjean was always happiest at work when she was using her considerable talents to write “deathless prose” about something she cared about. The last piece she wrote for us was called “The World You Wish For, We Work For.” I think that this aptly describes Valjean as well because the world you wish for she worked for.

Finally I think of her commitment to spiritual growth – her meditation practice and how she evolved over the years we were friends to take life in stride and to see all of life’s challenges as “an opportunity to practice.”

Periodically throughout our friendship Valjean would announce that she was back on her “body of a goddess campaign.” As I thought about Valjean’s life I realized that she was really on a much larger campaign – she was really on a “life of a goddess campaign.”

In my opinion, it was a stellar campaign.

~ Donna Ducharme

Mary's Eulogy

To borrow a line from EB White and his classic Charlotte’s Web, “It is not often that someone comes along who is a true friend and a good writer. Valjean was both.”

She was my friend, but when I first met her I was looking for a writer. Denise Zaccardi gave me her name, and she showed up in my office, this classy, feisty, brainy, beautiful woman. She wrote a piece for me called “Sustainable Manufacturing,” back in 1988 when nobody had ever heard the word “sustainable.” She told me later that she had no idea what we were talking about, but she was a pro, she could write anything she put her mind to.

She wrote all kinds of things, in her near-forty years as a writer: children’s books, marketing copy, radio scripts, reports for nonprofits with complicated names like Center for Neighborhood Technology and even more complicated agendas that she managed to explain in simple, compelling terms.

Much of her best work she did in partnership with the wonderful designer Kym Abrams. Every so often, I would find on my desk a book with a bold fresh look, arresting copy, and clear compelling messages, and I would think: Valjean and Kym, at it again, and find their credits on the inside back cover.

Her writing was like the woman herself: smart, stylish, no-nonsense, spare, honest, clean, beautiful. It’s hard work; she made it look easy.

So from that initial work together we became friends, and later almost like sisters. We shared that old Catholic background, and she came to church with me sometimes, here at St Gertrude’s, or other places. Like many people here, and in Africa, and elsewhere, I became part of her circle, and she became part of my family, attending my children’s weddings, visiting my mother, welcoming my granddaughter.

Three summers ago, she and I took a trip to Ireland, in search of her own family, the family her father James McLenighan left behind when he emigrated to America as a little boy. It was a magical trip, and I suspect she has told most of you the stories. She found the township where the McLenighans came from; she found the church where her grandparents were married, the graves of distant cousins, the records of the land they farmed. Most important, she found a whole new set of friends and family, and became part of their lives. That same gift of friendship she shared with all of us, and with the family in Africa, and with people all over this country, she brought back to the Irish countryside her father had left a century before.

As she became sick, she used her writing, that wonderful blog, to share with her friends and family what she was going through: her hopes, her determination, her pain, her acceptance, her love.

A few days after her death, I got a call John McLarnan, Valjean’s great friend over in Ireland, who celebrated his 94th birthday last Wednesday and whom Valjean and I had planned to visit next week. His words speak for me and I know for all of us: “When you’ve been given a gift, you have to say thank you. And it was a gift to have known her.” Thank you, Valjean.

~ Mary O'Connell

Franny's Eulogy

My parents gave me an older sister. The nuns at the Immaculata High School gave me a younger one. Her name was Valerie Jean McLenighan.

The only child of Wanda and James Mclenighan, Valjean was raised by her devoted mother who recognized early on that she was an extraordinary child. She received a scholarship to a private elementary school, skipped several grades, and entered high school at the age of eleven. That’s when I first met Valjean, almost fifty years ago. She had so many qualities that immediately drew me to her that it’s difficult to know where to begin.

There was her enormous love of learning. Although she figured out many clever ways to get out of study hall for more interesting activities, she often said that it never even occurred to her to cut a class. She devoured her studies, and it showed. She always focused on the goal—and pursued it with a passion, as long as it didn’t hurt anyone in the process.

There was her straightforward, unpretentious manner. Even back in high school, she meant what she said and said what she meant—without hesitation. Her strength and courage to stand up to anyone . . . Even the nuns, when she would question a doctrine—were impressive to witness.

Her creativity was unique, whether it was writing for the school newspaper, starring in one of the high school’s many plays, or being a cheerleader . . . Yes, that’s right. Valjean was a cheerleader—not your typical cheerleader, but rather one who wrote her own cheers to the tune of Peggy Lee songs and other jazz standards. She had a sophisticated appreciation and love for music even back then.

She visited me once at college, and I remember her kindness when she went out of her way to include a very shy roommate in our weekend plans. Inclusiveness was the name of Valjean’s game. She had a knack of making people feel special—letting them know that she truly cared about them.

She loved children. I don’t know who had more fun crawling around on all fours . . . Valjean or my kids. That love would be shared with the children of many of her other friends and demonstrated years later with her African family’s little Valjean and John Davies.

While some of her friends were raising families, Valjean was raising people’s consciousness of social issues that were having profound effects on many. Valjean truly made a difference.

Over the years, Valjean and I took about a dozen vacations together. And the one constant memory of our travels that remains most vivid is the laughter. I think I’ll miss her sense of humor most of all.

Valjean had a practical nature, and she couldn’t help speaking out against inequities, both large and small.

On a high school trip to new york, she ordered a snack from the hotel’s room service, and when it was delivered, along with the bill, Valjean immediately got on the phone and asked to speak to the catering manager. She said that she had never heard of such outrageous prices for a small bowl of chips and a few glasses of lemonade.

Another time, when she had just returned from one of her trips to Africa, we went to the movies, and when we bought some popcorn, she said to the kid behind the counter, “My African family could live for months on what we just paid for this popcorn.”

And when her picture was taken swimming with the dolphins in Puerta Vallarta on her final trip just a few months ago, she said “Eight dollars for a picture is obscene.”

Yet although she had been taught at an early age to be practical—even frugal—her generosity toward others was unparalleled.

We were coming out of one of her favorite Italian restaurants one night with our leftovers, when a homeless woman approached us and said she was hungry. We gave the woman our doggie bags, but Valjean did more: she touched the woman’s arm and said, “God bless.” And as we walked away, Valjean turned to me and said, “Damn, i was looking forward to having that fetuccini for lunch tomorrow.”

Her spirit of generosity continued . . . Even through her final months, and it was humbling to observe. When she was admitted to Northwestern hospital, she expressed concern about the long trips that many of her friends and family had to make to see her. When her doctors suggested hospice at Lincoln Park Hospital, her very first question was, “How much is the parking fee for visitors over there?” And on the second to her last day of life, when she was surrounded by her friends and family, I stood leaning over her, holding her hand, talking to her, and she looked up at me and said, “Sit down Franny, you’re going to hurt your back.”

She touched so many during her lifetime . . . Not just family and friends, but the guy selling streetwise on the corner, the incarcerated, the homeless, those plagued by afflictions and addictions, disadvantaged families both here and thousands of miles away. She felt it was her responsibility to reach out to them—to ease their pain—and to try to make the world a better place for them and for all of us. That was the heart and soul of valjean . . . The heart that I suspect will live on in ours forever and the soul that we’ll all join someday.

So let’s thank Valjean for being in our lives— for her love, her laughter, her strength, for always caring and for leaving her mark on our world. And although her death leaves an enormous void, let’s try to fill it with the many beautiful memories that she left behind.

~ Francine Friedman

Party Time - RSVP to Join Us

To Valjean's many friends and family: Please join us directly after the memorial Mass to celebrate Valjean with a reception at Piper Hall at Loyola University.

Date: Saturday, August 16

Time: 2-6 PM

Place: Piper Hall, a two-story building on Loyola’s Lake Shore Campus in the Edgewater neighborhood. The building is immediately behind (north of) the Loyola University sign, at the corner where northbound Sheridan Road turns west in front of the University.

Easy parking is available for $6 in the University’s parking garage. Or try your luck at street parking.

Are you coming? Please let us know by August 13.

The best way is through a comment on the blog. Simply click on the word "comments" under this blog entry and you'll see a box to enter your comment. Let us know how many people you're speaking for. Choose an identity ("anonymous" is fine; you can always identify yourself in the comment box if you wish); then click on "publish your comment."

Directions from St. Gertrude's church (1420 W. Granville)

- Go east on Granville, cross Broadway and Winthrop and turn left (north) on Kenmore. If you hope to find street parking, start looking here; you are now within two blocks of the university.

- Continue north on Kenmore,cross Rosemont, and continue through the light at Sheridan and Kenmore to enter the Loyola campus. If you have riders in your car you can drop them off at this point and they can walk east (towards the lake) to Piper Hall (on the lake at Sheridan.)

- To park in the garage, turn left as the entry drive curves. Continue straight and you will come to the entry gate for Loyola U parking.

- To walk back to Piper Hall, simply head toward the lake on the entry drive or Sheridan Road.

If you need a ride, just ask. You can also catch the #151 or 155 bus, or walk (it's less than a mile).

If you get lost, you can call Mark McKelvey at 773/220-2815. No rescue dogs will be sent, but you will get an ear full of sympathy.

Memorial Mass and Party, August 16

At last! The memorial Mass for Valjean will be held Saturday, August 16, at 1:00 pm, at St. Gertrude's church, 1420 W. Granville (at Glenwood). Parking is available just north of the church, off Glenwood.

A fabulous party will follow, at a location to be disclosed very soon.

The Empty Guest Room

This is Stan Vernon and Tom Fischer writing from Portland, OR.

Valjean has been much on our minds this week: she was supposed to be here now, a five-day visit we were all looking forward to. Tom and I haven’t lived in Chicago for 20 years, but we kept in touch with VJ and would see her on her occasional trips to Boston, where we then lived, and our occasional trips to Chicago. Her first trip to Portland was intended to be not just our first reunion with her in several years but a real celebration: she booked the trip in the spring when the prognosis looked promising. Her ashes were buried the day before she was to have arrived.

We were going to make her a present of a children’s book, the proceeds of which go to help the children of AIDS victims in Zimbabwe. Now we will keep the book as a reminder of our dear friend who touched so many lives here and abroad. We raised a glass to Valjean on the day of her death and have raised several more since. In the Anglicized version of the old Scottish toast:

“Here’s to you. Who’s like you? Nobody.”

Resting Places

On Friday we buried the ashes of Valjean and her mother, Wanda, in a single grave at St. Adalbert's cemetery on Milwaukee Avenue. Family and close friends were there to say goodbye, to mourn our loss, and to recall the many facets of Valjean's life and the impact she had on us and others. How absurd that she should now be in the ground. That she should not be. (She, of course, would say that I am the one being absurd: "We all have to get off the conveyor belt.")

It's a lovely spot, should you care to visit, away from the road, open to the sky but surrounded by trees. Surrounded, too, by many graves, old and new, with markers and, farther back, monuments, most of them bearing Polish names. Several of Wanda's relatives (Gawel) are there, in another section of the cemetery. Mary has ordered a simple marker for the two of them.

On another note entirely: Many people have asked about Sasha, Valjean's cat. She is now the proud owner of a new keeper, Sharon Kelly, in a veritable feline palace above the Kelly sisters' yarn shop, Arcadia. (Location, location, location.) Sharon -- a gifted caretaker -- reports that Sasha has taken contented ownership of the place, where she has a private bedroom and bathroom, an 80-foot run from one end of the apartment to the other, and many nooks and crannies for naps and cat-like solitude. A steady supply of high-quality and novelty yarn awaits her for many years to come.

To Be Read with a Brogue

Mary had a call today from Valjean's "Irish boyfriend" (pictured). She offers his words as a gift to all of us:


It was a gift to have known her.

I’ve rung everybody she met here, or gone and talked to them. People can’t believe it. She made so many friends here. She would go into people’s houses and talk to them – one man said, she made you so comfortable, talking to her. Young people, old people, children, it didn’t matter, she just was so natural, she would come into your house and sit down and talk to you.

She loved to have fun. Sometimes it amazed me, how she kept up the pace -- she would just keep going, eating, visiting people – only once or twice did she go back to the guest house for a bit of a rest.

She said she would come back for my 95th birthday. I said Valjean, that’s a long way off. I said, Valjean, if I were sick, I wouldn’t want you to see me like that. And she looked in my eyes and said, John, if I were sick I wouldn’t want you to see me either. Little did I imagine that Valjean would be in heaven before me.

We said goodbye, I said no tears now, just hugs and kisses. She said she would come back this year, I know you were coming too. You were a good friend to her, you and your mum, she loved you. She made so many friends – and that family in Africa too, the little girl, Valjean… We’re all praying for her – not that she needs the prayers, she’s in heaven sure, someone like her.

I had to call because, if you’ve been given a gift, you have to say thank you. And she was a gift.

Services for Valjean

From Champaign, Elihu Smith sends the following message to Valjean's friends:
We are planning to have a service celebrating Valjean's life and death at the Prairie Zen Center; tentatively this will be at the end of the July retreat, Sunday, July 27, at 11:00 AM. Valjean asked me to have this service when I visited with her in Chicago last week.

Please be comforted and healed in your grieving.

From Mary O'Connell:
We are currently working on arrangements for Chicago services for Valjean. The basic plan, following her wishes, is to have her cremated and then have a memorial Mass and reception/party later. Details will be posted here; and please be in touch if you are interested in helping arrange a party to celebrate her life.

Back Porch Anyone?

(from Mark McKelvey)
If you read nothing else of this – go to paragraph four below re: a get together today, Wednesday, July 9th.

Hi everyone - Kate and Francine, I just got your phone messages and send our love to everyone with a broken heart. When I left last PM I didn't know what to hope but did focus on a good passage and I'm sure Val got that. There was certainly a wonderful crowd of friends gathered to say good-bye! Thank you Kate, again, for making sure we were all properly lit. Valjean would have particularly appreciated that thoughtful touch as those bright lights can be so unforgiving.
I'm so glad Judith was there at the end. Could one of you forward this to her as I don’t believe she is on this email?

I know that acceptance comes after the anger and we'll all get to that but for now Edna St. Vincent Millay sums it up pretty well -
"Gently they go, the beautiful,
the tender, the kind;
Quietly they go, the intelligent,
the witty, the brave.
I know. But I do not approve
and I am not resigned."

I also know that everyone's exhausted and needing their quiet - and that we'll all gather later to celebrate our dear friend.

But - like Val I’m Irish and I feel a strong need to share time today in celebrating Val and having a good cry. If anyone's interested in joining in (please come!) I’ll be sitting on her back porch/stairs as of about 5PM today. I just talked to Kate and she’ll be there. Val’s back porch is the closest I can think to get to her – wanted to go to the hospice this AM but you’re all gone and the bed’s empty and I can’t bear that thought. I know Val will be with us looking out over the back yard so I’ll be there around 5/5:30PM and will bring some drinks and a cooler. We can get a pizza, if we want, from Leona’s and I may even bring some Irish tunes. Bring a Kleenex and your favorite stories. God knows Valjean helped create enough of them! Francine – Giudi – Kate and Mary – could someone please bring the swimming-with-the-dolphins photo? That’s a must.

Valjean and I sat on her porch when we lost our dear friend David 14 years ago next month. We sat in the sun and had a good cry. We'd celebrated David's birthday in early August and then he and Mike went to Traverse City to see David's family and David took ill and died there. Val, Betsy and I'd talked about going up to see him but it was too late. After we got the call from Mike I went to Val's and we sat on her back porch and had a wonderful pity party. She and I'd sort of set up a network of care for David and Mike, though nowhere near as sophisticated as the one set up this year for Val! Betsy and I were going to California the next day and thought about canceling and going with Val to the Traverse City funeral but she said David would say "go - go - go" re: our long-planned trip, and we did. Val promised to remember and share every detail of the Trav City trip and didn’t fail us. When we called from the west coast after she came back one of the first things she said was that "the comfort food was really good"!! I thought of that last PM when Francine or someone brought in the pecan sandies. The comfort food was really good!

Hope to see you later today.

Valerie Jean McLenighan 12/28/47 to 7/9/08

Valjean died this morning around 2:30. Judith Conaway was with her, so she did not go alone.

Valjean's body will be cremated. Her life will be celebrated on a date to be determined. Keep watching this space.

(Kate is kindly posting this for me because my internet connection is down- Giudi)

Letting Go

Tuesday morning I received a call from hospice that there had been a significant change in Valjean's condition. When I arrived, around 10 am, she was in the state in which she has remained for the past 14 hours or more: unresponsive, taking difficult breaths at long intervals -- about 10 seconds apart by the time I left, around midnight. Many of her close friends gathered around and spoke lovingly to her; some read or sang or prayed. We recalled for her the good times we had enjoyed together -- and they were legion! Could she really have taken so many trips, with so many of us? When did she work?

The nurses say she could hear us, and I hope they're right. We assured her it was OK to go, that everything was taken care of and that we would be alright. But her body continues, working every muscle in her chest, back, and shoulders to take those labored breaths. I hope this is a short night.

Getting Ahead of Ourselves

We were so encouraged by Valjean's oxygen accomplishments on Sunday that it was terribly disappointing to see her on Monday: very weak and pale, sleeping fitfully much of the day, and breathing with enormous difficulty, even with the mask. Still, glimpses of the girl we love shone through as she opened her eyes and smiled at visitors, practically purred at Laura's massage, cracked a joke or two, and at one point burst into not-quite-identifiable song.

It's not clear whether this apparent setback is due to the change in medications, too much time on low oxygen (overreaching with the cannula), or simply the progression of the disease. Probably a combination of them all; we are complex creatures, and never more so than when we're ill. We hope for better news tomorrow.

Anticipation

"Looking forward" isn't something you'd normally associate with hospice, but as long as you're realistic about the boundaries, it's sometimes possible. Valjean is beginning to look forward to going home -- still in hospice care, of course -- hopefully this week.

On Sunday she took an important step in that direction: she received her oxygen through a nasal cannula (a plastic tube with forked outlet) instead of a mask. And last night she slept with the cannula instead of the bi-pap. She may go back to the mask today, at least for a while, but being able to tolerate the cannula could make things easier for her at home, possibly even allowing us to wheel her onto her back porch to enjoy that beautiful garden. Mary will set the search for 24-hour nursing care in motion today.

The New Chemical Regime

Valjean's meds have been changed -- from dilaudid, with its peaks and valleys, to a longer-lasting morphine -- to keep her on a more even keel. That means she tires more quickly, sleeps more, and says she feels somewhat hazy when she's awake.

Her own condition, plus the cramped hospice environment, lead me to suggest a (voluntary) change in visitor behavior: Please keep your visit short, and be alert to her energy level; it's more difficult now for her to ask people to leave, so she's counting on you. Keep the number of visitors in her room to no more than two or three; if there are already people in her room when you arrive, there's a very nice family room and a kitchen at the end of the hall where you can hang out.

We're in the process now of looking for 24-hour home care so VJ can have more pleasant and familiar surroundings. The doctor has suggested we get an LPN because of the complexity of her needs, though he says the right CNA might also do. If you've had experience, good or bad, with any local agencies or caregivers, please let us know with a comment on the blog.

Thanks for keeping up with Valjean's progress.

Boogie-town

Years ago, Valjean started thinking about what her old age might be like. No placid retirement village or assisted living facility for her. She would gather a group of compatible friends, and together they would buy a large, cheap building in an underdeveloped neighborhood -- I think she imagined Englewood at the time -- renovate it, and create Boogie-town, a community where she could keep on dancing, talking, and gettin' down all night.

Seasons Hospice is no Boogie-town. It's a quiet environment, with clean floors, freshly painted walls, tolerable food, and very nice staff; it looks like she's being well cared for. But the rooms are small, with few amenities, and she has a roommate who seems barely there (and who I hope is not bothered by VJ's visitors). It's not a place you'd really choose to spend your final weeks, if you had a choice.

Valjean may have a choice. The medical director, Dr. Amin, saw her this morning, and Mary talked with him afterwards. He told her they would try to maintain Valjean at an oxygen level and medications that would make possible a transition to home, maybe next week. He said that because of the complexity of managing her symptoms, home hospice would send a nurse daily rather then 3 times a week, and she would also need 24-hour care, possibly from a nurse (LPN or RN) rather than a home aide. He repeated what Ken had told us a few days ago: if Valjean does go home, there is always the option of returning to inpatient care if needed.

Dr. Amin said one other thing that I debated whether or not to put on the blog, but I think it's important. He said that her big issue now is anxiety. Hospice is doing what they can to manage this with medications, especially to make sure she doesn't experience "air hunger." What her friends can do is be as supportive as possible. And part of that is starting to let her go.

Turning on a Dime

The USS Northwestern has turned on a dime. Valjean is being transferred to Seasons Hospice (at Lincoln Park Hospital) today. Time is uncertain. Check back for updates.

Step by Step

On Tuesday Valjean took the first steps toward hospice care, meeting with Ken, a nurse from Seasons Hospice. He struck us as an empathetic man, experienced and knowledgeable in his field. He made it clear that home and inpatient hospice are both feasible for VJ, that they are not mutually exclusive, and that neither is an irrevocable choice -- she may move from one to another, as her needs change. No one is pushing her precipitously toward a decision, and we may look into other hospices as well, but I left the discussion feeling significantly more positive about Valjean's options.

Wednesday brought many visitors...after I had left, so I rely here on Kate's report. Among them was Elihu, Valjean's Zen teacher from Champagne, who left her in what Kate describes as "a very placid yet positive, almost joyful mood." Her friends Steve and Lilly also arrived from Canada -- but before they were able to see VJ, Lilly was admitted to the USS Northwestern with a badly infected finger. ("Couldn't they wheel her in here and we can have a pajama party?" asked Valjean.)

I had left Valjean this morning when the physical therapist came in -- I assumed to move her legs around a bit. Would that I had stayed! The grapevine now informs me that in fact the PT got her to stand up and take a couple of steps. Small and stumbling though they were, this may bring her one step closer to home.

Three Trees on the Balcony

Valjean took the midnight special last night -- OK, it was only 10:30 -- and is now comfortably ensconced in the Palliative Care Unit on the 16th floor of the new Prentice building at Northwestern. This morning I watched her devour French toast, pay a couple of bills, and try to comb her hair under the elastic band of her oxygen mask -- each act a moment to cherish.

She has a fabulous view of the lake, from which I expect she'll be able to see the regatta on Wednesday and, if we can twist the bed around a bit, the fireworks on Thursday. But those are future events, and what the-girl-who-lives-in-the-moment focused on was the sight of three trees growing on the unprotected balcony of a high-rise to the northeast.

Mary was present later in the day for a meeting with Korey, the unit's social worker. Korey told VJ and Mary that of all the options we had discussed, three (skilled nursing facility, L-TAC, and the Rehab Institute's cancer program) are not appropriate for various reasons. A fourth, home hospice, may not be feasible because of her acute oxygen needs. The fifth is inpatient hospice.

Korey recommended Seasons Hospice at Lincoln Park Hospital, because it's good and because it's flexible: they accept patients for a variety of reasons -- including acute symptom management (her severe shortness of breath) as well as end-of-life. Thus it might be a place she could go and stay till the end. She very much doesn't want to move.

Mary and Kate went there this afternoon, separately, to check it out. It's on one floor of a 1970s building -- the old Grant Hospital, I believe -- and the rooms are small but clean. It would be a major change from the spacious and modern accommodations of the past few weeks, "institutional" in a very different way, but both of our intrepid reporters had good encounters with the staff.

Someone from Seasons will come to the hospital on Tuesday to evaluate whether Valjean meets their criteria. There remains the question of whether they meet hers. At least two of us will be at this meeting for support. Do not call us trees.

How Can I Miss You if You Won't Go Away?

It's too bad this blog doesn't come with a soundtrack, or I'd post a rendition of Valjean's singing -- still strong, but not improved by 6 or 7 months of lung disease. The prologue:

As we feared, Dr. Patel, the oncologist, confirmed that it is not only pneumonia and radiation pneumonitis but cancer that is thriving in and around Valjean's lungs. She has started her on Tarceva, which should shrink the tumor and have some palliative effects, but is not meant to be curative. Still, Patel said she thinks Valjean could look ahead as long as three months or, if she responds particularly well to the Tarceva, even more. Valjean's response: "Three months? My friends will be saying [and she sings] 'How can I miss you if you won't go away?'"

We had a visit from the Palliative Care liaison, and it looks like Valjean will be moved there on Monday. Kate and I checked it out and gave it our seal of approval: fabulous views, big screen TV, internet access, fold-out bed in the patient rooms, an exercycle in the family lounge, very friendly and accommodating staff. I think Valjean will like it, though she's become quite attached to life in the ICU. What's not to like? "I have a room with a great view. People wait on me hand and foot. And my friends come in and shower me with love. The food could be better." (Not a lot you can do with Ensure and jello.)

We will use the week in Palliative Care(and the PC social worker) to weigh the options for next steps. We've learned that inpatient hospice is reserved for the last 2 weeks of life, so we'll be trying to learn more about long-term acute care hospitals, home hospice (combined with a 24-hour hired home health aide), and possibly a cancer program at the Rehabilitation Institute of Chicago.

Launching Pad

Valjean and I (this is still Giudi) spoke this afternoon with Dr. Preodor from Palliative Care and learned that PC is meant for very short-term stays, usually 5 to 7 days. For a longer stay, should recovery not be in the cards, she would probably need to go to an inpatient hospice, which we will look into. ("I thought I'd go to Palliative Care and that would be the end of it," said VJ. "Apparently not.")

But it sounds like PC might be a good launching pad to inpatient hospice or other next steps. They have a social worker on the floor who can help find an appropriate place, get whatever pre-certification is required and so on. (Valjean has been waiting three days since her request to have a social worker visit her in the ICU.)

We were told that Dr. Patel, her oncologist, "is on board with" palliative care. But we have not heard from Patel herself that there are no options for treating the cancer. That meeting is scheduled for tomorrow.

No Weasly Answers

On Tuesday evening Valjean, Mary (her medical power-of-attorney) and I had another frank talk with Dr. Sporn, the pulmonologist. This time the discussion was not in an emergency situation, and VJ was in prime interview mode, posing carefully considered questions and giving no quarter to weasly answers. She's given me permission to be frank on the blog as well.

Dr. Sporn described Valjean's condition as having plateaued, with no significant change since last Friday. While there remains some hope of turning around the acute problem -- apparently severe pneumonia -- he said that the longer she remains on this plateau, the smaller the odds of her recovery. If her condition worsens and she goes on a ventilator, he said, there is no chance it will turn around. In addition, the fluid around her lungs (malignant pleural effusion), which continues building up even as it's drained, indicates a more advanced state of cancer.

Valjean was loud and clear: "I'm not going on the ventilator." So while Dr. Sporn said there's no risk in trying one more course of antibiotics, and Valjean agreed, she also asked for and received a DNR (Do Not Resuscitate) order, which would prohibit an emergency intubation.

Sporn thinks that if she's really improving, it should become more clear-cut over the next several days. As I write this, she's supposed to be having another CT to see if they can detect any changes, for good or for ill. Meanwhile, we discussed options such as long-term acute care (if it looks like there's a chance for improvement over a longer period of time), hospice (at home, which Sporn agrees is not really viable, given her need for breathing assistance), and palliative care, a kind of in-hospital hospice, at Northwestern, where the treatment goal would be comfort rather than recovery. Valjean and Sporn agreed that this sounds like the best option, barring recovery. We hope to meet with the palliative care team tomorrow afternoon, to learn more about the program.

I know it's difficult not to know what's happening. I'll continue to update the blog as soon as I can, whenever there are new developments.

Holding Steady...Still Having Fun

Valjean has had a slew of visitors over the past few days, napping in between, and -- social creature that she is -- thoroughly enjoyed seeing everyone. (Too bad none of them play pinochle.) She's in good spirits, though her medical condition is essentially unchanged since Friday. In the words of today's attending doc [the incongruously named Michael Moore]: You still have a very severe pneumonia.

This morning, because the tube they'd inserted in her pleural cavity on Friday wasn't draining well, the interventional radiologist injected a clot-buster, which did get things moving. This should make her breathing easier, though the first effect is increased pain, which they're very good at dealing with. (As Valjean says, "better living through chemistry.")

Longer term... well, it's still very uncertain. The doctors have said that improvement is possible, but it's likely to be very slow, and a nursing home may be in her future. Valjean is giving clear and careful thought to all possibilities and choices the future may bring. She asked to have a social worker come up to talk about insurance issues, so she's still very much in charge. And she's adamant about one thing: "I'm still having fun."

Her Inner Dolphin

Valjean asked me to post some photos from her recent trip to Puerto Vallarta, where she spent some time with Franny (left?) and Nancy (right?) getting in touch with her inner dolphin.

Good Progress!

Update from Giudi

Those of us who had been with Valjean on Thursday were overjoyed to see her on Friday. The meds seem to have kicked in with gusto, and she's breathing much more easily, using a lighter oxygen mask some of the time, and speaking up in no uncertain terms to the docs and system that allowed her to get to the point she was at when she was admitted. She's hungry, but not yet allowed to eat anything more substantial than jello.

In the afternoon she underwent a procedure to insert a small tube to drain the fluid that's around her lungs, though that's a relatively minor part of the acute problem.

She had several visitors Friday, and it visibly lifted her spirits. So, close friends, if you have a few minutes to drop by in the next few days, Valjean says you are welcome: Northwestern Memorial, Feinberg Bldg, Room 907. This is the medical ICU. Visits should be short and quiet, no flowers. In particular, try not to let Valjean talk much (yeah, right...); she needs to conserve all her energy for breathing. The phone in her room is turned off, but you can call the main hospital number, 312.926.2000, if you want to make sure she's still in that room.

Back to the USS Northwestern

This is Giudi, with a report based on notes from Kate Green.

Valjean was admitted to Northwestern Memorial again on June 18, with severe breathing difficulty. The next morning they transferred her to the ICU and put her on a BiPAP machine, which pumps oxygen through a tightly fitting face mask, similar to the C-PAP that’s used for sleep apnea. With that support, she was able to undergo a CT scan.

That scan, upon which we pinned so many diagnostic hopes, was inconclusive. It did show that there was not much fluid in the pleura (hence nothing to drain to make her more comfortable). But there is a large "white-out" area in the right lung, which could be due to 1) bacterial pneumonia, 2) radiation-induced pneumonia, 3) an "aggressive clone" of cancer cells (the oncologist thinks this is unlikely), or 4) a combination of the above. In any case, she has only a small portion of lung working. She’s receiving antibiotics to treat #1, steroids for #2. Bronchoscopy (to retrieve samples of fluid and tissue) might clarify the diagnosis, but she couldn’t cannot tolerate such an invasive procedure without more breathing support: intubation and a ventilator.

After frank discussions with docs and friends, Valjean has agreed to intubation, if her breathing worsens, in order to give the meds a chance to work and, we hope, resolve the acute situation. If the treatment is successful in turning around whatever is going on in her lungs and she becomes able to breathe on her own, the ventilator will be removed; if not, we will honor Valjean's wishes for removal of the tube. The docs have been respectful, informative, compassionate. Friends with medical power-of-attorney are standing by.

Sounds pretty grim....but Valjean is still Valjean. When the pulmonologist arrived and asked how she was, she replied (muffled by the 02 mask), "not my perky best." After the consult with the oncologist and pulmonologist re: the CT scan, "Don't they know what the white stuff is? What are we paying these people for?"

When we left tonight (6/19) they had raised the pressure on the BiPAP and Valjean was breathing a bit easier. She was alert, hungry (only sips of water or juice are allowed), apparently stable, and watching Law and Order.

Valjean sends her love.

Back from Mexico

Little did I dream when I left for Mexico May 23 that I would end up spending as much time in the hospital upon my return as I did south of the border. I left on a Tuesday and felt fine (although it was at the crack of dawn), but by Saturday was becoming short of breath with any type of exertion. I attributed it to the heat and humidity, and possibly to the pollution in Puerto Vallarta, but it got worse every day, and by Tuesday, June 3, when we were to fly home, just rolling my carryon from my bedroom to the front ot the apartment made me feel completely winded. I needed wheelchairs to get through the airports in Puerto Vallarta, Mexico City, and O'Hare.

My downstairs neighbor helped me with my luggage, and I barely made it up the two flights of stairs to my apartment. I phoned the pulmonology night line at Northwestern Mem. Hospital, and someone phoned me back 15 minutes later telling me to come directly to the ER. So at 10 p.m., having eaten nothing but airport and airplane food all day, I grabbed a 6-inch subway on the way down to the ER, driven by my intrepid and very helpful neighbor. It was a strange night in Chicago, spooky and extremely foggy, but we eventually found the ER entrance and by 2 a.m. or so I was being wheeled up to a fantastic corner room on the 15th floor of the new Prentice Women's Hospital. Floors 14-16 are dedicated to oncology patients. I had a very bad night the rest of the night, and the following morning they drained a liter of fluid from my lungs. Considerably more fluid remained, but it can't be drained too quickly or the lung does something bad, I forget what. I think maybe Thursday they did a procedure called something like pleurecentesis, which was to stick three catheters into the space between the lungs and the chest wall and drain the fluid. When they tested the fluid, they found metastatic cancer cells. They theorize that last winter, when I was diagnosed, there was a sprinkling of malignant cells in the pleura, like a sugar coating, that didn't show up on the images. Those cells grew and started emitting fluid, and the rest is history. Ultimately they drained 4 liters from my pleura, and then did a procedure that essentially glues the lung back into place in the chest wall so that fluid won't be able to build up there in the future. I came home this afternoon to a huge pile of snail mail, hundreds of emails, and a house with no food. My friends have been wonderful, however, and someone's bringing dinner over tonight--the lovely Nancy Gardner, who's a great cook.

The plan is to recover from these procedures, gain back some strength, and get a CT scan in a couple of weeks to see whats happening inside my lungs. A secondary issue is tissue damage caused by radiation treatment, which was depositing some fluid inside the lungs, not beyond them in the pleura. The treatment for radiation pneumonitis is massive doses of steroids, so they're going to put that off for a while and hope that now that the fluid has been drained the inflammation will calm down.

Now I really feel like a lung cancer patient, I'll tell you. They sent me home with a couple of oxygen tanks, and a home care company will bring a home oxygen machine over tonight between 6-9. I was supposed to have been discharged last night, but the doc who examined me just before I was to leave was concerned about swelling in my legs and ordered another test that couldn't be performed until this morning. The Doppler study showed there is, in fact, a blood clot in my right calf, so i will have to give myself shots of blood thinnner twice a day.

Fortunately, my antidepressants starting kicking in whhile I was in Mexico, so my mental health is reasonably good, considering wht's going on. That's it for now. I'll write again tomorrow with details of Mexico trip. xox

Update by Proxy

This is Giudi, reporting in for Valjean at her request.

Our friend had a nice time in Mexico, including swimming with the dolphins (I'm sure she'll have a photo up here eventually), but became very short of breath the last few days. Came home, went straight to the ER, and was admitted to the USS Northwestern, where they removed about 4 liters of fluid from her lungs. On Friday she had a "minimally-invasive" surgical procedure to reattach her left lung to the chest wall. She expects to be released sometime this week, and will be back on the blog when she's up to it. We all hope that will be soon.

Feeling Better

Spent Wednesday night through Saturday after breakfast at my zen center in Champaign, which calmed my mind considerably. I think also the Effexor (antidepressant) is beginning to kick in. Anxiety still licks around the corners, but I have Lorazepam for that, so I am actually looking forward to my trip to Mexico. I'll be leaving early Tuesday morning, returning the following Tuesday evening, June 3. A couple of friends have told me that I am beginning to seem like my old self, and I will say that I am starting to feel better, although I do believe my old self will never be the same. The therapist I saw last week observed that I am moving from acute illness into the chronic illness phase (although my zen teacher warns against believing the label "chronic illness.") The fact remains that I am going to have to live with the idea that the illness can reappear at any time, and with the practice of getting CT scans every three months to see what's happening and determine if anything has changed. This will take time, I realize. I am also going to have to go back to work soon, as I'm living on savings. I'm already doing a little work, but I'm not up to full capacity. Finally, I have to get stronger. I haven't been to a gym in months, although I have been walking and going to yoga, but not regularly. Your ongoing expressions of support, concern, love and compassion, in all their various forms, are of great support and comfort. Many thanks.

Still Struggling

Don't worry, I haven't done myself in, but I'm still struggling with anxiety and depression. Am on Lorazepam for anxiety, which helps, and Effexor for an antidepressant, which hasn't yet kicked in full force. I've had two sessions with a Ph.D. psychotherapist, who tells me he doesn't think I need a psychiatrist, that he and my primary care doctor should be able to manage me medically. I am trying to keep busy and active, and will be heading down to Champaign tomorrow for a few days of a zen intensive retreat, returning Saturday after breakfast. I will be leaving Tuesday, May 27, for Mexico, returning June 3, so don't worry if I don't blog again before June. Thanks to everyone for your expressions of love and concern. They mean a lot to me.

Breather

Since my last blog I've been on an emotional roller coaster, dealing with very intense experiences of depression and, more recently, anxiety, and trying to find professional resources to help me with these. My insurance plan has virtually no coverage for mental health: 12 sessions per year at $30/session, as long as it's with an M.D. in a hospital setting. I located a talk therapist with the Chicago Center for Family Health, a man who specializes in chronic illness and has had a lot of experience with cancer patients. I can see him for $60/session, which seems steep, since I'm living on savings, but in reality is quite reasonable these days. The earliest I can see him is May 15, which, when I'm in the tunnel, seems like an eternity, but today, when I'm not in the tunnel, seems do-able.

I have an appointment with my primary care doctor Tuesday to talk about medication for this biochemical nightmare. Working with my internist is a stopgap measure until I can locate a psycho-pharmacologist with an institution that charges on a sliding scale fee basis, but I really think there is as large biochemical component to what I have been experiencing. I can feel the anxiety and depression coming on in my innards; it's gut wrenching and agonizing.

My oncologist's physician assistant tells me it's very normal for people to sink into depression following treatment. All my resources were marshalled to get through treatment, and it was a very active time: radiation 5 days a week for six weeks, chemotherapy every three weeks, and then just trying to get through the aftermath of chemotherapy. But now there's nothing to do but watch and wait, and plenty of time for the demons to arise. Two cancer survivor friends of mine have pointed out to me that cancer changes one; Thursday morning I awoke in a cold sweat, face to face with fear of death. It's quite debilitating: every cell in your body contracts, your bowels twist, your heart pounds, and the aftermath stays with you for hours. There's a heaviness, lack of interest in anything that usually engages you, slight nausea.

I have been trying to be very gentle with myself, and to make sure that I'm getting some exercise every day, and to eat right and spend lots of time with friends and loved ones. Structuring my time seems to be key. So, friends and loved ones, call me, and let's put something on the calendar.

Shrinkage

The CT scan showed that all that remains of the tumors are a couple of tiny blips. These are most likely scar tissue, but they might be cancer cells. This is the best possible outcome anyone could have hoped for: "excellent," in the words of my plain-spoken radiation oncologist. The official report won't be ready until tomorrow, but I saw the photos.

I am teary eyed as I type this. I think I am structured for delayed reaction - at the time I saw the pix I was pretty numb, in fact all day until just a few minutes ago I've been pretty numb. In fact I've been pretty numb, or else teary, for weeks now. For this reason I have been referred to a psychologist. Apparently it is quite normal for patients to be depressed at this stage of the game, the "Now what" phase. The active fight against the cancer is over; now and for the next two years I will get a scan every three months and watch to see if there's any change. They say most people need help with this transition, so I am going to go ahead and see if any of these psychologists is in my insurance plan, and then take it from there.

In short, the word for today is "shrinkage."

Monday Morning

Roughly 24 hours from now I'll be discussing results of my CT scan with my oncologist. Am trying to fend off anxiety about this. After all, I'll be getting CT scans every three months for the next two years, according to the protocol for the clinical trial in which I am participating. Am going to pull out my meditation cushion and sit myself down for half an hour, but just thought I'd check in with you beforehand. I'm feeling a little stronger each day, though still fighting a running battle with the blues. I guess that's natural, but it feels really strange. Will write again tomorrow, when there's something more concrete to report. Love to all.

Through the Cracks

My oncology nurse told me someone would call me to follow up after my last chemotherapy (April 1). It seemed odd to me that no one had scheduled a CT scan or any follow up by now, so I phoned the USS Northwestern to talk to my oncologist's physician assistant. She informed me that the protocol for the clinical trial I am in calls for a CT scan three weeks after my last chemo, which means next Tuesday, April 22. She seemed surprised that this had not been scheduled.

Just received a call from the "patient care" person who will be scheduling these appointments for me. Tune in next week for results of scan, which I guess will determine what, if anything, happens next. My understanding is that they expect to see shrinkage in the tumors, along with residual scar tissue, and that we will practice "watchful waiting" to see if there's any growth in the scar tissue, which would indicate that it is cancerous. Seems to me at some point I should get an MRI and PET scan, too, but they didn't mention anything about that, so I will ask next Tuesday. The cancer I have likes to metastasize, and two favorite sites are the brain and the bones. The MRI and PET scan, I believe, looks for cancer in those places. The protocol calls for follow up blood tests and CTs of the chest every three months for two years.

I am slowly beginning to feel better, that is, I guess, to recover from the side effects of chemotherapy. I sure hope I won't need any more of that stuff. It is not fun.

Feeling Better

Day 13 after my last chemo and I woke up feeling somewhat better. Will be heading to the acupuncturist shortly but just wanted to thank all those who checked in with me over the weekend and helped to keep my spirits up. I'm hoping in another week to be more fully back in the game. Meanwhile I just have to persevere through this period of feeling constantly jet-lagged. The good news is that I seem to get a few hours' respite in the mornings, and the jet-lagged or hungover feeling doesn't kick in til around 11 or so. In short, I'm heading into the new week in somewhat better spirits. Love to all.

Impatient Patient

Eleven days after my final chemo, and I'm growing impatient. I'm in the stage where I feel hungover or jet-lagged all the time, and it feels like I've been here for months. Which, in a way, I have. Although of course it's always just today. Just now. The battle is to just stay in the moment, and see that whatever thoughts I have about my condition are just thoughts, opinions. And to take every opportunity to get out of my head. Saint Bob S. is coming over at noon today to help me remove my storm windows, a task that needs to be accomplished by Monday, when the condo association's window washers will arrive. Afterward Kate and I are going to the movies, perhaps with Bob in tow, we'll see. As for the rest of the weekend, it will unfold as it will, and I will get better, albeit more slowly than I would like. I still haven't heard from the pulmonary rehab lady about alternatives to the program at Rehab Institute of Chicago. Next week I guess I will start to track some down myself. One good reminder is that, whatever I think of the cumulative side effects of chemotherapy and radiation, without this treatment I probably would be dead by now.

In My Dreams

I'm once again weaning myself from Lorazepam at night, and dreams the last few nights have been big and in technicolor. Tuesday I dreamed I was in the depths of despair; in the dream, my friend Allan helped to talk me out of it, and when I awoke I was restored to sanity. The psychological arena is the big battleground right now; that seems to be where the effects of chemotherapy manifest most strongly. The chemo robs me of interest in things that ordinarily fascinate.

Last night I had two work dreams. In one I was in a sort of work camp. My job was to cook and clean. I had a landing and set of stairs to wash, and a huge tub of meat to form into burgers. First I found a desk and some writing paper, and I was extremely happy to immerse myself in story telling. I had to tear myself away from the writing to do the other work, but the point was that I was writing and enjoying it, something that has felt like it would never happen again. I can't tell you how comforting that was.

The second dream last night was more about aesthetics and the sociology of aesthetics. I was with some extremely sophisticated people, involved in very sophisticated projects they described in annoying polysyllabic terms that meant nothing to anyone but themselves - jargon. To one of them I found myself saying "B*sh*t. Simple, descriptive language is the most effective. Just say what you mean straightforwardly." The rest of the dream was devoted to observing the posturing of the various other participants in the dream, and wondering what I was doing there. This dream, too, comforted me greatly, and made me feel like eventually I will be myself again.

The chemo makes me feel as though I am occupying a skin that belongs to someone else. It's one thing to know intellectually that I will eventually feel more like myself; but in the dreams, I DID feel and behave like myself. I had another dream maybe about a week ago in which I was at the end of a long, picaraesque adventure, and I could see that what seemed very serious and heavy at the time was in fact quite funny. I awoke smiling.

So here's to another day. For me: hydration this morning, acupuncture this afternoon. And for you? Smiles, I hope, and plenty of them.

Into the Tunnel

Hi, everyone. Have been enjoying this nice weather since my last chemo on Tuesday and feeling pretty good, but now feel myself heading into the tunnel. Am down to my last half-steroid, and when that wears off, side effects tend to kick in. So with my last few hours I'm heading over to Kate's back yard to enjoy the spring. I expect to feel the side effects most acutely for the next week or two, then should slowly start to return to full strength. Spent time with Mark and Betsy in their backyard yesterday afternoon, topped by a lovely salmon dinner. Thank God for you, my friends, and for spring. Love, Valjean

Last Round of Chemo

Spent 9:30-5:30 at the hospital yesterday peppering my oncologist's Physician's Assistant with questions, getting blood drawn, waiting through a 1-hour backup to get chemotherapy, sitting on an IV drip for 4+ hours, then going down to the film department to pick up a copy of my last CT scan (3/10). Brother Bob S. accompanied me throughout, unfailingly good humored and patient as a saint. I am bouyed by waves of support from him and all those who called me the night before, sent cards and good wishes, including my 93 year old friend from Northern Ireland, John McLarnon.

I went to bed last night about 10:30 and decided not to set my alarm; the upshot was I slept til almost 10:30, which I apparently needed to do. I am back on Lorazepam, being chock full of steroids once more; will wean myself off steroids by the weekend, then begin to wean from Lorazepam early next week. I am scheduled to go in for rehydration tomorrow morning, and possibly again next Tuesday -- whatever it takes to minimize the side effects that dragged me down after the last round of chemo.

Next steps: there will be a CT scan at the end of April to see what's happening with the tumors. They expect to see shrinkage and scar tissue, and there probably will be no way to determine whether the spots are scar tissue or tumor other than to watch and wait. Another CT scan in three more months may tell something or not. So this is my big opportunity to rest in the unknown, which in reality is what all of us are resting in all the time, whether or not we are aware of it or acknowledge it.

Meanwhile my travel plans are shaping up nicely: Mexico in May, Portland and Seattle in July, Ireland and Greece in August-September. I hope to start working again in May and June, since I'm running out of the receivables from last year that have supported me so far this year. Looks like there are three possible assignments, and if these pan out, they should keep me going for a while.

On the pulmonary rehab front, I'm still in negotiations with the Rehab Institute of Chicago. I wiggled my foot back in the door, trying to persuade them to let me take the classes but not the physical therapy, which I believe I can mostly do myself. It involves strength training and breathing exercises, and there's a great deal of info available on the web about this. Another Plan B option is to investigate pulmonary rehab programs at other facilities that don't bill it as physical therapy, but as something else that my insurance will cover. In short, I'm not worried about it too much right now, I'm sure something will pan out.

Meanwhile the sun is out and the weather is warming, and I'm going to take the opportunity to enjoy a walk through my neighborhood and look for more signs of spring. In my backyard tulips, hyacinths, crocuses are all struggling to make an appearance. Inside the apartment, the last of the lilies is pouring forth a lovely scent, and an amarylis is blooming nicely, in company with a Christmas cactus Kate brought over.

I'm feeling blessed and relieved right now that the last treatment has been received, and all I have to do is allow healing -- create the conditions in which it can occur -- just like watering and fertilizing flowers, and ensuring them adequate sun.

Temporarily Normal

This morning was the first morning I woke up feeling more or less normal in weeks. I went to a children's play with my friend Kym and her four-year-old boys: James and the Giant Peach. Shortly I will go to a grown-up movie with Kate and Bob, something about Miss Pettigrew, with Frances McDormand, one of my favorite actresses.

Last night I went out to dinner to celebrate Francine's birthday; even though we left the house early -- 6 p.m. -- I was pooped by the time I got home and asleep by 9. So my energy still is not what I would like, but I have much to be grateful for. I want to remember this weekend NEXT weekend, when I should be in recovery from my fourth, and final, chemotherapy treatment, scheduled for this coming Tuesday. I expect I'll be out of it for two to three weeks, then slowly wend my way back to full strength.

My doctor told me I should be recovered fully by the end of May; my nurse says it will be more like the end of June. Let's hope the doctor is closer to the mark, but in any event it will be what it will be. I approach this Tuesday with mixed feelings of dread and relief that this is the last round, and I appreciate the fact that there's a war going on in my chest between the cancer and all the chemo-radiation I have undergone to try to combat it. I haven't done as much during the last three months as I thought I would while I was off work, but I give myself permission to heal. Please keep me in your thoughts and prayers as I head into the home stretch, and many thanks to all of you for your love and support.

Signs of Resurrection

I've been slowly crawling back to normal after round 3 of chemo March 11, and am feeling more or less civilized these days. Mornings are fine, afternoons are okay, but I start to flag by late afternoon/early evening. Nonetheless, this is much better than last week, and I intend to enjoy the coming week, given that round 4--my final chemotherapy--is scheduled for April 1.

Since chemo started I've been taking Lorazepam at night, both to control nausea and to aid in sleep. My acupuncturist suggested that I try to wean myself from it, because patients tend to become dependent on it to sleep. I checked with the U.S.S. Northwestern, and they concurred that it would be okay to get off the drug. They said not to nap more than half an hour during the day, in order to sleep better at night. Last week I cut back to half a tab at night, and then for the last couple of nights I've been Lorazepam-free, but waking up every couple of hours, and sleeping restlessly. My body will probably adjust in a few days, but meanwhile, I'm sure the restless sleep is contributing to flagging evenings.

I need to keep reminding myself that this, too, shall pass--the last round of chemo took a bite out of my spirits as well as my energy level, and served up a heavy portion of grief and sorrow. The lack of sleep is probably aggravating these feelings. In self-defense I have been making travel plans for a week in Mexico in May, a week in the Pacific Northwest in late July, and a trip to Ireland and Greece in late August-September. I have found this to be an effective antidote, as is every ray of sunshine that manages to make it through this largely overcast early spring.

I was supposed to start a pulmonary rehab program April 4, but yesterday I received a call from the Rehab Institute of Chicago to the effect that my insurance won't cover $200/session for 16 sessions of physical therapy, so I'm now in negotiations to resolve that dilemma. I'm trying to talk my way into the classes, which are free, in hopes that I can just do the PT at home. The therapist seemed to indicate yesterday that this was a reasonable solution, and she's supposed to phone today to discuss the matter further.

My friend Ryan, the certified nurse healer, is back from a two-month tour of the American Southwest and Mexico, so I will resume treatment sessions with her tomorrow afternoon. I find these sessions tremendously restorative and am looking forward to them.

On an Easter Sunday walk through the neighborhood with Patty and Dave, we saw a yard full of crocuses just started to poke their little green heads through the detritus of winter. I am hanging on to this vision with all my might, and hope that you, too, are noticing signs of resurrection.

Last Day of Winter

Since last Friday or so, when the steroids from my March 11 chemo started wearing off, I have felt pretty much like one continuous bad hangover. My cousin Prince Phil took me for a blood draw yesterday to see if I was dehydrated or missing magnesium or whatever, and the numbers showed all as it should be -- in fact, better than expected. The nurse said this was just what Round 3 of chemo feels like. She offered to have me come in today to be hooked up to IV rehydration and electrolytes, but I woke up this morning feeling better, thank heavens, and have actually felt civilized for much of the day.

During the dark days I didn't want to read, or do much of anything except watch TV. Those of you who know me well know that my TV is a tiny (maybe 14-inch) Sony Trinitron that dates from the late 1970s or early 1980s. The antenna is stuck on with silly putty. I keep it in a low cabinet in the living room and, not being a cable subscriber, really don't watch it much. But when all one wants to do is watch TV, one needs a better setup.

I DO intend to enter the 21st century with a flat screen and cable, as soon as I figure out my redecorating scheme, and where I want the new TV to go. But meanwhile, yesterday as I was channel surfing through Judge Judy and Dr. Phil (you KNOW I was not feeling well), I decided at a minimimum to bring the TV out into daylight and up to a reasonable height, meaning I needed a TV table on wheels.

Enter Laura S. this morning, who whisked me off to Target. Not only did she help me find, purchase and schlep the table, she also helped me assemble it. The results are as pictured, and I am thrilled. Not only that, I haven't even watched it yet, a sign of my improved health and spirits. Many thanks, Laura.

On another up note, my car is back in my possession, thanks to Scott J. , who hauled me through rush hour traffic on Milwaukee Avenue last night to go fetch it before the shop closed at 6.

As I write this, the sun is shining on my back porch, my cat Sasha has found the perfect spot for enjoying it, and my house is full of the scent of half a dozen lillies that have opened in the past 2-3 days, just in time for the last day of winter. Yesterday I considered throwing them out, despite their beauty, because the scent was so pervasive, and I was so sick. The radio says today is the last day of winter. Tomorrow is the vernal equinox. Today I appreciate the lilies, and though I'm not back to my perky best, I'm grateful for the improvement. Let that be a lesson to me, if not to you.

Rough weekend

The good news is that my car isn't totaled. It will be in the shop next week, but the repair bill came in just under the Blue Book value, so I don't have to add car shopping to my to-do list. Good thing, too. My treatments are beginning to catch up to me, and I've had a very low-energy weekend. I anticipate the next two days will be rocky as the steroids wear off, but after that, with luck, I'll revivify. I remember my mother saying to me once: "I know what a flower feels like when it starts to wilt." Now I do, too.

Good News, Sad News

Greetings, all. The CT scan showed the lymph nodes in my left chest are now within normal size. The big mass in my right lung has shrunk by a third and turns out to be two smaller masses. These results are very good, according to my oncologist. The docs are really not looking for shrinkage at this point, as the radiation will continue to kill the cancer for another three months, and today's chemo and one more treatment April 1 will continue to do their work. My oncologist says I am her healthiest stage III patient. I am satisfied with these results to date and think they are quite promising.

I go back in a week for a blood draw to look for any adverse side effects from today's chemo, and I'm to phone if I develop any symptoms before March 18 (the blood draw). Meanwhile I have yoga tomorrow morning, dinner with Kate and a friend from Halifax, Nova Scotia tomorrow evening, acupuncture Thursday morning, and Thursday afternoon at the collision shop getting my car damage estimated and repairs begun (unless they tell me the car is totaled, given that it's a '96). Friday morning, another yoga class, followed by a visit with a friend from Ohio.

I did have some very sad news yesterday, that my beloved Shakespeare professor, William E. Brady, died at home in Galesburg the evening of March 9. He was a gifted teacher with a large capacity for life, and I grieve his passing. Please keep him and his family in your thoughts and prayers.

Signs of the Times

I've been meaning to blog for days, but keep getting interrupted. First, I wanted to share some signage that I have been admiring on the way back from acupuncture for the past several weeks. These two signs are of a genre that is fast disappearing in the U.S., or at least around Chicago, or at least around neighborhoods I commonly travel through in Chicago, but I've seen this style in Zimbabwe and I remember also seeing it in Tanzania. I pass these Chicago stores heading east on Augusta from Oak Park, when I can't deal with the expressway and decide to take the scenic route home. For your viewing pleasure, the M&M Food Mart and the One Stop One Shop. The Coca Cola logo in particular has a Tanzanian feel to it, I think.

Anyway, I've been interrupted by bad things happening with respect to my car. No one has been hurt, but many hours have been spent dealing with the consequences, first, of locking my keys in the car last Monday while gassing up on the way back from acupuncture; second, thieves who broke into our garage in the early hours of Saturday morning and stole my car radio/stereo and garage door opener; and, three, an accident that happened earlier today, my fault, in which I rear ended a window washing truck. We were heading west on Ontario, near State Street, toward the I-94 Xway. I was in the middle lane, behind a window washing truck, looking for an opportunity to change to the right lane. I saw it, seized it, and was looking over my right shoulder to make sure my blind spot was clear when the guy in front of me stopped suddenly. My left headlight hit his right bumper. The rest you can see for yourself in Exhibit C, to the left and below.

No one was hurt, but I had to go to the police station, I was late for acupuncture, and when I was home I had to spend quality time on the phone with Geico to report the accident and make an appointment with their certified repair shop for Thursday afternoon. So I will shove another afternoon down the same black hole that gobbled up last Saturday afternoon and last Monday afternoon my other two car-related mishaps.

On the health front, I had a CT scan this a.m., no results yet, and my port flushed and my blood labs drawn, so I am all ready for chemotherapy tomorrow at 8:30. I will post results of the CT scan as soon as I have them. Now I'm headed off for a nap. Good evening, all.

I'm Here. I'm Fine. Just Puttering About and Being Lazy.

I guess it's been a while -- too long -- since I've written here. I had a guest from out of town, Christine, a friend from college, and we were busy running around and doing stuff from last Friday to Wednesday morning, when I drove her to the airport. Then yesterday I slept a lot and just felt lazy, and had a bit of a go-round with feelings of nausea, but nothing worth writing about. It has come to my attention, however, that when I don't write, some of my dear readers get worried that there's something wrong with me. Fear not. I am fine -- sleeping more than usual, but other than that, A-OK. It has been hard to get a rhythm established now that I'm not having radiation every Monday through Friday morning. I have a break until March 10, when I get a CT scan to see what those tumors have been up to while I've been getting treatment. I also will spend a couple of hours getting my port flushed on March 10, and getting my labs drawn. Looks like pulmonary rehab will start on or about April 1, and involve classes every Tuesday and Friday. Right now I've cut back on acupuncture to Mondays only, but I will resume acupuncture twice a week once chemotherapy starts again, March 11. I meet with a pulmonologist March 6, and sometime in there I will also go to the orthotics people to get my custom orthotics fitted. The plantar fasciitis has just about disappeared, but the object of the game, and the custom orthotics, is not to have it reappear. I will be starting a knitting project sometime in the next day or two. Other than that, just visiting with friends, cooking, doing physical therapy for my foot, meditating, thinking good thoughts, and occasionally doing a good deed, or at least trying to do no harm. I'm wondering whether I would have more energy and less nausea if I went back to acupuncture twice a week. I have an appointment Monday and will talk with Dr. Lin (first name: Fang. Don't you love it?). Meanwhile, have a good weekend, everyone, and don't worry about me. Be happy! Love, Valjean

Goodbye Radiation Therapy, Hello Pulmonary Rehab

Today I had my last radiation treatment. I am apparently the poster child for people who do well on it. The radiation oncologist asked me if I'd be willing to talk to other patients, and the radiation nurse, as I was leaving, looked like she was sending her firstborn off to her first day of school. Except for needing more sleep than usual, I have had few, if any, of the other side effects that so weirded me out when I read about them in "Radiation Therapy and You." One more reason -- and reminder -- to stay in the moment. And to promise myself not to write things like "Radiation Therapy and You," should such a job offer cross my threshold. And not to listen when doctors like my radiation oncologist, who is prone to hyperbole, say things like: "By the time you're finished, you're going to want to put a bullet in my head." I have no such impulses, although I did try to suggest to her the other day that she might want to consider toning down her rhetoric.

What's next? A three to four week break, with no treatment of any kind, followed by two more chemotherapies beginning either March 11 or March 18. I'll find out tomorrow, when I get my labs done. The next rounds of chemo will be 22 days apart, meaning I will finish up treatment at the end of April. I will get a CT scan before my next chemo, and I am also supposed to see my pulmonologist, although I can't get an appointment until March 6. Finally, I am to enroll in pulmonary rehab. After three phone calls to the U.S.S. Northwestern to try to do so, I was told my pulmonologist needs to send an Rx, notes, and results from my last pulmonary function test to the pulmonary rehab therapist. So I left yet another message; it's almost impossible to talk to an actual person first time out of the chute.

For those of you who haven't seen me in a while, I still have a full head of hair, although it might be thinner than it used to be, and it's definitely grayer. It strikes me as odd how many people inquire about this -- men as well as women.

Today I am somewhat lethargic, possibly due to separation anxiety, or possibly because I might have overdone it yesterday, when I felt so good I didn't even take a nap, or seem to need one. Instead, thanks to my generous friend Nancy G., I took in a matinee performance of "Dolly West's Kitchen," by Frank McGuinness at Timeline Theatre, upstairs at the Wellington Avenue Church (the basement of which was the scene of the founding of Chicago Women in Publishing back in the early seventies). It's a good play by a good company, and I highly recommend it. It's set in County Donegal's Inishowen Peninsula, one of my favorite places, and deftly interweaves some complicated family dynamics with an examination of the Irish Republic's neutrality during World War II and two Irish-American romances, one involving a pair of gay soldiers.

I will sign off now, because it's time to phone in my symptoms to the computerized service that's testing whether tele-reporting of symptoms is more effective than simply telling your doctor what's going on. Modern medicine!

A Gift

This cancer has brought many gifts, not least of which has been reconnecting with old friends. One of these, Doug Wilson, was my professor at Knox. I studied American poetry with him, and also took a seminar on Whitman's "Leaves of Grass" and the poetry of Wallace Stevens, surely one of the best classes of my college career. In January I had the pleasure of dining with Doug and his wife, along with classmate Bill Barnhart and his wife Kate, at the Chicago Literary Club, where Doug gave a talk based on research for his latest book, "Lincoln's Sword." We had a conversation about the value of a liberal arts education, especially literature, in coping with life's challenges. Afterward, he sent me the following, which I pass along as a gift to you: W. H. Auden's Preface to his long poem "The Sea and the Mirror: A Commentary on Shakespeare's The Tempest."

Says Doug: "This is Auden's ars poetica, a brilliant and inexhaustible poem about art and how it relates to life, science, and the great imponderables. In a way, they are all summed up in this Preface, the last part of which you may recognize as being woven from severaI of Shakespeare's key lines. So here it is:"

Preface
(The State Manager to the Critics)

The aged catch their breath,
For the nonchalant couple go
Waltzing across the tightrope
As if there were no death
Or hope of falling down;
The wounded cry as the clown
Doubles his meaning, and O
How the dear little children laugh
When the drums roll and the lovely
Lady is sawn in half.

O what authority gives
Existence its surprise?
Science is happy to answer
That the ghosts who haunt our lives
Are handy with mirrors and wire,
That song and sugar and fire,
Courage and come-hither eyes
Have a genius for taking pains.
But how does one think up a habit?
Our wonder, our terror remains.

Art opens the fishiest eye
To the Flesh and the Devil who heat
The Chamber of Temptation
Where heroes roar and die.
We are wet with sympathy now;
Thanks for the evening; but how
Shall we satisfy when we meet,
Between Shall-I and I-Will,
The lion’s mouth whose hunger
No metaphors can fill?

Well, who in his own back yard
Has not opened his heart to the smiling
Secret he cannot quote?
Which goes to show that the Bard
Was sober when he wrote
That this world of fact we love
Is unsubstantial stuff:
All the rest is silence
On the other side of the wall;
And the silence ripeness,
And the ripeness all.

Acupuncture

Several people have asked me about acupuncture, so I thought I would show you what it looks like. Here is me on the table, with a tummy full of needles. Mostly they don't hurt going in, although occasionally one does. Today Dr. Lin put a needle in my calf, and it felt like I had just been cattle-prodded. Whatever had been blocked in there unblocked with a vengeance. In Chinese medicinal theory, to oversimplify, the body's energy, or "chi," travels along 12 main routes, or meridians. Illness results from blockage along these routes; the needles unblock blocked energy, allowing the chi to flow, and the body's yin and yang, male and female, dark and light forces to rebalance and come into harmony.


The meridians are associated with various organs: lungs, liver, spleen, kidney, large intestine, and so on. Needles are inserted at various points to address specific issues. Today, for example, Dr. Lin placed a total of 22 needles at various points: a couple on my head to boost energy; one in each crook of the elbow and at various points along the inner arms for the lungs; some around the tummy to control constipation and nausea.

I don't think the acupuncture will cure my cancer, but I do believe that it is helping me survive the treatment. I go twice a week to the office in Oak Park, which is more convenient to my apartment than the one on Michigan Avenue, with its attendant parking hassles.

I had a good day today, great energy all morning, I actually felt very close to normal. Had a lovely nap from 2-4, and the rest of the afternoon tried to make a dent in the endless pile of paperwork that doesn't stop just because I have cancer: filed receipts, returned phone calls, paid a few bills. My upstairs neighbor stopped by with some frozen squash and lemon grass soup, which I will have for lunch tomorrow. My appetite remains voracious, I am happy to report.

Good News, Bad News

Am emerging from a couple of foggy, foggy days. Monday was radiation, acupuncture, and this stunning view from my back porch. The plantar fasciitis is coming along slowly, thanks to aggressive home PT and all the kind suggestions from fellow sufferers. But by Monday afternoon I was dragging, and on Tuesday morning I woke up queasy, depleted, and decidedly sore-footed. After radiation, went up to get my blood drawn, and labs showed that I was dehydrated and low on magnesium, something you don't want to become, I assure you. So they popped in an IV and sat me down for a couple of hours for some fluids, magnesium, antinausea meds, and dexamethasone, my new best friend. Then I limped across the street to the dermatologist's to have the stitches removed from my biopsy, by which time I was reduced to tears. The good news is that the biopsy showed the rash was nothing more serious than inflamed hair follicles, and it's well on its way to disappearing. Inflamed hair follicles on my CHEST? What are hair follicles doing there?

More bad news is that I had to go into the hospital again today for 4 more hours of magnesium infusion. The good news is I feel a WHOLE lot better than yesterday. Appetite's fine, nausea's under control, and although I have to be on a bland diet for another couple of days, I should be AOK by Saturday or Sunday. They tell me I can reasonably expect more of the same, if not worse, after my next two chemos, so I guess the honeymoon's over. But for today, all's well that ends well. Speaking of which, I endedTuesday watching "Harold and Maude," thanks to Netflix. If you haven't seen it lately, I highly recommend it. That, too, reduced me to tears, but the good kind.

Gaetano has been a prince, his self-portrait notwithstanding. He has been here since Sunday, extraordinarily helpful, kind, and very, very funny. He was great kibitzing with the radiation therapist, bringing lunch when I was being re-magnesiumed, patiently waiting through hours of acupuncture, IV infusions, bureacratic snafus, cooking beautiful dinners, shopping, tidying up, knowing when to be quiet, and just what to say when he wasn't, and generally a joy to have around. Bless you, my prince!

Fasciitistas

In the last 36 hours I have discovered the following people have all had plantar fasciitis: my upstairs neighbor, friends Bob and Ken, Nancy's sister Sue, Leonard B, my meditation teacher's wife, probably one or two others who have escaped my aging memory. They have offered various bits of advice (freeze a water bottle and roll your foot over it; write the alphabet with your toe before getting out of bed; pull your toes back to stretch your calf when driving long distances). Yesterday I iced my afflicted foot four or five times, did two rounds of PT at home, and gulped ibuprofen as prescribed. The upshot was that I could get dressed this morning without a cane - progress! So thanks, fellow fasciitistas!

Plantar Fasciitis

Last Tuesday a.m. (chemotherapy day) I awoke with an intense pain in the bottom of my left foot that required me to use a cane to get dressed. About ten minutes before my cousin Phil (blessed be he) arrived to drive me to the hospital, it eased enough for me to lose the cane and get to the hospital just leaning on Phil. It got better as the day went on, we did the chemo, and then went out to dinner. After dinner, I stood up and the excruciating pain was back.

Long story short, today I was diagnosed with plantar fasciitis, an inflammation of a strip of tissue at the bottom of the foot. Some chemotherapy drugs cause the plantar fascia to tighten up during the night, and then when you take your first step in the morning, you injure it. So that's probably what happened to me. Treatment is to stay off it as much as possible, ice it, ibuprofen it, and do some exercises at home. If those don't work, PT. The handout from the foot doc says symptoms should stop "after several weeks." We'll see.

I never was fond of fasciists.

Boxes within Boxes

What started my current train of thought was a little round box of tiny pebbles of ocean-smoothed bottle glass from Hawaii given to me for my last birthday by friends Ken and Linda. This box was contained in another box of beechwood and inlaid mother of pearl, a reproduction of a IV-Vth century Egyptian piece, from the period when Egyptian life moved from Pharaonic to Arabesque. Marked by geometric, sometimes curved patterns, the new style made its way into art forms from building decorations to jewelry--and onto my bathroom windowsill, where it now holds the pedestrian little proxibrushes used to prevent bacteria from doing too much damage to my receding gums.

Right around my birthday, Francine presented me with a small box of rocks, this handmade of paper, with a handpainted lid and beaded handle. It was made and given to Francine to give to me by a woman named Barbara, whom I've never met, but to whom Francine told the story of my cancer, and who was moved. Francine and our friend Lynn were asked to pick some stones for me from Barbara's extensive collection. The largest is a Chinese flourite, a defending stone. Three smaller ones are garnets, to be given to people who have touched one's life. There's a blue topaz, all about calming and healing, and a moonstone, representing the Divine Feminine (Kanzeon again: see January 17).

I started thinking about how old these stones are, and how long it took the ocean to wash that bottle glass smooth on the Hawaii beach, and how interconnected we all are, and everything is throughout space and time, and the beauty of it all. Then I looked around my place and noticed all the other decorative boxes in my possession, some of which came into my family before I was born.

There's a wooden, wood-burned, hand-painted box that holds two decks of pinochle cards. On the bottom it's signed "Sofia Lanius, October 1944." There's a gorgeous silver cigarette box, intricately carved with Mayan decorations, complete with matching (and monogrammed) lighter and ashtray, from my parents' 1945-1947 stay in El Salvador, where I was conceived. There's a black laquered cigarette box brought by my father from Okinawa, where he was doing something mysterious for the U.S. government in the early 50s, sinking deeper into alcoholism, but always thoughtful, with a good eye for craftsmanship and beauty. Cigarettes and playing cards -- the McLenighans were a fun couple, until they weren't.

In my bedroom, two more wooden boxes from the El Salvador days or earlier, both beautifully covered with paper in Art Nouveau style, one holding a couple of decks of cards for bridge, another holding some silver jewelry. A handpainted oval papier mache box from Nepal, given to my mother by one of the attorneys in her office, which now contains seeds from a plant that my upstairs neighbor Michael, may he rest in peace, called "Snow on the Mountain." A handmade box from Kate holds my most frequently used jewelry; finally, two ceramic boxes from Mexico, one inherited from my beloved friend Dorothy Tollifson, who died at the age of 95 holding my hand.

In my living room there's a rectangular wooden game box with a wooden handle, presented to me by my Zimbabwe family on the trip when I first met little Gladys Valjean, then a delightful 4 years old. The box closes with a little strip of leather that slips over a tiny nail. Inside the bottom and the lid are 32 egg-carton like depressions, where 62 seeds are dispersed according to rules I never understood. The object is for one player to move all his seeds to the other side by capturing oppponent seeds--again, according to rules I never mastered but having something to do with leaving three seeds in a cup at any given time. It's a game of strategy, not unlike Go, and Martha (Gladys Valjean's mother) is very good at it.

These days probably the most important box in the house is my box of 28 pill boxes. This, too, is the Buddha, another manifestation of Kanzeon. It is industrial plastic, with seven columns, one for each day of the week, and four rows, two yellow (for morning and noon pills) and two blue (for evening and bedtime). This is hands down the least attractive box in the house, but it's functional and durable, and what can you do. It holds the chemicals that are trying to save my life, and I am grateful, if not aesthetically satisfied.