VJournal

Donna's Eulogy, with Messages from Martha and Mhizha

2008-08-21T18:15:00.003-05:00

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

2008-08-19T19:25:00.002-05:00

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

2008-08-18T19:49:00.000-05:00

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

2008-08-07T22:10:00.005-05:00

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

2008-08-06T10:29:00.002-05:00

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

2008-07-31T10:01:00.002-05:00

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

2008-07-26T22:44:00.004-05:00

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

2008-07-10T19:10:00.003-05:00

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

2008-07-09T13:32:00.003-05:00

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?

2008-07-09T10:11:00.005-05:00

(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

2008-07-09T06:15:00.004-05:00

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

2008-07-09T00:51:00.002-05:00

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

2008-07-08T02:02:00.002-05:00

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

2008-07-07T07:55:00.002-05:00

"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

2008-07-06T06:45:00.003-05:00

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

2008-07-04T11:09:00.005-05:00

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

2008-07-03T09:09:00.001-05:00

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

2008-07-02T21:11:00.004-05:00

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

2008-06-30T21:14:00.003-05:00

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?

2008-06-27T22:02:00.004-05:00

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

2008-06-26T19:07:00.002-05:00

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

2008-06-25T16:25:00.003-05:00

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

2008-06-23T14:54:00.003-05:00

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

2008-06-22T21:36:00.005-05:00

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!

2008-06-21T07:10:00.005-05:00

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

2008-06-20T09:18:00.003-05:00

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

2008-06-11T16:35:00.003-05:00

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

2008-06-10T11:29:00.001-05:00

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

2008-05-25T12:18:00.003-05:00

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

2008-05-20T15:11:00.002-05:00

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

2008-05-04T09:15:00.004-05:00

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

2008-04-22T20:02:00.003-05:00

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

2008-04-21T10:21:00.002-05:00

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

2008-04-16T13:41:00.003-05:00

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

2008-04-14T09:01:00.002-05:00

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

2008-04-12T09:54:00.002-05:00

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

2008-04-10T06:34:00.002-05:00

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

2008-04-06T14:17:00.002-05:00

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

2008-04-02T12:24:00.002-05:00

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

2008-03-29T15:17:00.004-05:00

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

2008-03-25T10:47:00.002-05:00

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

2008-03-19T15:35:00.004-05:00

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

2008-03-16T18:01:00.005-05:00

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

2008-03-11T17:55:00.003-05:00

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

2008-03-10T17:13:00.007-05:00

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.

2008-02-29T17:51:00.004-06:00

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

2008-02-18T16:41:00.003-06:00

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

2008-02-13T17:07:00.003-06:00

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

2008-02-11T18:45:00.000-06:00

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

2008-02-06T16:21:00.000-06:00

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

2008-02-02T12:40:00.000-06:00

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

2008-01-31T19:15:00.000-06:00

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

2008-01-30T14:35:00.000-06:00

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.

Be Not Afraid

2008-01-26T20:00:00.000-06:00

I've had two conversations today with friends who said they had been afraid to phone me, essentially because they're afraid of my cancer. They did phone nonetheless, thank goodness. I told them both that I'm not afraid, at least not right now. My practice is to stay in this moment, and as I have been doing that, I have noticed that there is no fear in this moment. Sometimes there is grief and sadness. Much of the time there is contentment; sometimes, joy. But there has not been any fear for two or three weeks, I think since about halfway through my first chemotherapy, when I noticed I wasn't throwing up or having any of the other dire consequences I read about in "Chemotherapy and You" and "Radiation and You."

So, friends, be not afraid. I need you in my life, and I want you in my life, and I don't want fear to keep you out, or on my side, to shut you out. In fact, I don't want any negative energy around this illness at all. I'm looking for positive, healing energy, and love, love, love. I'm very much alive. I'm just as much me as ever. And I need my loved ones, worry-free.

Lodat

2008-01-24T21:09:00.000-06:00

Had a moment of panic tonight--the apartment seemed awfully cold as my meditation group was meeting (a group of 2 only tonight, the other regulars being occupied with out of town guests). I checked my digital thermostat, and there was a strange reading: lodat. Nothing happened when I hit the button that changes "program" to "manual." Nothing happened when I hit any button, in fact. Gulp. Given my recent infrastructure hobgoblins, and the temperature outdoors, I thought my furnace was going out. I have an out of town guest myself, from Dallas yet, so she is not acclimated to this weather. Turns out, when I adjusted my glasses and looked at the instructions on the back of the thermostat door, it was telling me "lo bat," for low batteries. I had the requisite double-A's in the house, and the instrux on how to change batteries were crystal clear, so we arrested the dropping temperature at the 67-degree mark, and there was no need to start looking for a hotel that takes cats. The incident showed me, once again, how easy it is for the mind to create problems where none exists. It is now a toasty 71 degrees in here, my cat Sasha is curled up in a comma in her favorite chair, and my friend from Dallas called to say she is heading home with ice cream. All's well that ends well.

My own batteries are beginning to be affected by radiation therapy (today was treatment #13 of 30). I find I get more tired than usual, and that I get tired in a different way. One minute I'm fine, and the next I'm bereft of energy, as though someone had yanked my batteries. It's taking a little longer to recharge, too. A week or two ago a one-hour nap kept me up til after midnight, and sleeping only lightly after that. Today I slept for about 1:20, and I'm pretty sure I'll sleep like a baby the whole night through. That's the only real side effect, other than the rash on my chest and back, for which I saw a dermatologist Tuesday and now have prescription cream and lotion, so it doesn't itch. I'm truly blessed, and I wish you all a warm good night.

Tuesday's Tempo

2008-01-22T20:09:00.000-06:00

Long day today, so just a quickie: Tuesday's Tempo includes a feature story on our "Share the Care" system and photo of yours truly on the first day of chemo, in the company of Francine. The story is by Julie Deardorff, health and fitness reporter, whose blog is now linked to this one.

After radiation therapy, my radiation oncologist sent me to a dermatologist to get the rash on my chest and back checked out. The dermatologist took a precautionary biopsy; he suspects the rash is a reaction to chemo and/or radiation, despite the fact that it started before treatment began. He prescribed two creams, which I will try tonight. In the grand scheme of things, the rash is not a big deal, in my view, but I guess they want to take care of it now, before the effects of treatment start to accumulate.

The upshot was that I spent from 8:30 a.m. to approximately 3 at the hospital today, so I was beat when I got home. After a nap I perked up, and I am now going to veg out in front of the tube for an hour or so (resting up for a strawberry sundae). Good night all.

Steady As She Goes

2008-01-20T08:32:00.000-06:00

It occurred to me that I've been writing interior monologues lately and not providing many specifics on the state of my health. I feel pretty darn good. I have had 9 radiation treatments out of 30 and one round of chemotherapy out of four. My appetite is rapacious. Acupuncture and pills so far have spared me gastro intestinal side efffects like nausea, esophagitis, etc. My energy is pretty good considering that my body is full of toxins. I'm up at 6:30 and have been managing whatever I need to manage -- driving, shopping, socializing, cooking, cleaning -- as long as I get a short nap in the afternoon. I start to fade around 9 or 10, and am usually in bed by 10:30 -- early for the old me, but certainly a reasonable hour for the contemporary me. As a rule I'm sleeping well, with one exception last week that I think was due to an over-long afternoon nap.

So far the most annoying side effect has been a rash that began on my chest and has now spread to my back. Benadryl did nothing for it, hydrocortizone seemed to help, and last week the acupuncturist gave me calendula cream for it, which I have been using since Thursday. In the great scheme of things this is a very minor issue.

I'm taking magnesium supplements now, since my last blood work showed a deficiency. I remain on folic acid, which protects the good tissue from the effects of the chemo.

I've tried out a few yoga classes at Gilda's and found a couple I like. Today I plan to do some yoga at home, given the weather. I feel I'm not getting quite as much exercise as I should be getting, and I need it to build up stamina. The effects of this treatment are cumulative, and they tell me the radiation starts to take its toll somewhere around treatment#10-#15, so we shall see what the coming week brings. For the time being, steady as she goes.

Kanzeon

2008-01-17T20:49:00.000-06:00

Yesterday the Prairie Zen Center in Champaign, IL, began a period of intensive meditation practice, or sesshin (in Japanese). This morning one of the members emailed me: "4:25 AM. Sipping some coffee before I head over for the first morning of sesshin and thinking of you.
Much love....... "

In the Japanese zen tradition, Kanzeon is the Buddha of compassion. She takes the female form and is known in Chinese as Kwan Yin. I have also heard her called White Tara -- I am not sure if this is her Korean name or Tibetan. In the Catholic tradition she is the Blessed Mother. My friend's email was the day's first manifestation of Kanzeon.

To me, the linear accelerator that delivers my radiation therapy is another manifestation of Kanzeon. Years ago in Champaign I learned a Japanese chant to this Buddha of compassion that is very rhythmic and beautiful. I have made it a practice to chant this sutra silently while I'm lying on the accelerator table, as well as many other times during the day. I think of it as the zen Hail Mary. Last weekend when I was meditating over at the Cenacle Retreat House, Taigen Dan Leighton gave me a rough translation of this hymn of praise--in part: "Joyful, pure, eternal. Every morning, Kanzeon. Through the night, Kanzeon."

It took all of human history to create this machine that gathers electrons from the dawn of creation, herds them into shapes that match my tumors, accelerates and hurls them against this cancer that is trying to kill me. Joyful, pure, eternal. Every morning, Kanzeon. Through the night, Kanzeon. Amen.

In Praise of Appetite

2008-01-14T15:03:00.000-06:00

New cancer patients get a lot of scary stuff to read. I have a thick file of booklets and pamphlets for patients that includes "Lung Cancer: Treatment Guidelines for Patients," by the American Cancer Society and National Comprehensive Cancer Network; "Chemotherapy and You," 64 pages from the National Cancer Institute; and "Radiation Therapy and You," also from the NCI.

Then there's my white ring binder from the Robert H. Lurie Comprehensive Cancer Center, with details in Section 4 on Cisplatin and Pemetrexed, the two chemotherapy drugs I'm taking, not to mention Section 5: "Managing the Side Effects of Lung Cancer and Its Treatment." Section 5 contains pithy little paragraphs on a litany of possible side effects, including anemia, breathing problems, bruising or bleeding, constipation, depression, fatigue, hair loss, infection, loss of appetite, mouth sores/gum and throat problems, nausea and vomiting, pain, peripheral neuropathy, radiation fibrosis, sexual and resproductive concerns, and skin problems.

They have to tell you this stuff, but it's disconcerting, to say the least. They're careful to say that not all of these problems happen to everybody, but nonetheless--well, nonetheless.

Anyone who knows me knows I love to eat. So those three little words -- loss of appetite -- have been weighing on me ever since I first dipped into "Chemotherapy and You" two and a half weeks ago. Since then, I have tried to make it a practice to pay attention to every bite I put into my mouth.

Yesterday I went to the Cenacle House on Fullerton for a day of intensive meditation with a zen group headed by Taigen Dan Leighton ( http://ancientdragon.org/) . They served a simple lunch of nicely seasoned stir-fried veggies, tofu and rice pilaf. Heavenly! For dessert there was pineapple (along with a ginger bundt cake), and I do believe that pineapple was one of the best I have ever tasted.

Today when I returned from acupuncture -- hungry, thank God -- there was a message on my machine from Nancy G alerting me to the fact that she had left a container of soup in my front hall. Cooking is so intimate -- you literally put your sense of taste into another's mouth. You nourish. I could taste the love in Nancy's soup.

So this is just a reminder. Savor your appetite. Appreciate every morsel.

Sustenance

2008-01-12T17:46:00.000-06:00

After a mini-break from blogging, I had thought to devote tonight's entry to a tutorial on women and lung cancer. But you are spared, at least for the time being. Instead, I simply wish to acknowledge what deep delight it was to indulge in my first real bath -- not shower -- since all this began.

This was a day of small and large pleasures. "Restorative yoga" at Gilda's. Doing a couple of loads of laundry, changing the sheets. Luxuriating in the tub. Talking with my dear friend John in Northern Ireland, and Judy H upon her return from Greece (and a 6.5 earthquake). Preparing and consuming three delicious, small meals, with a fourth planned for after my return from tonight's outing: Vitalist Theatre's production of David Hare's "The Bay at Nice." This is a little company associated with my alma mater, Knox College. Their production of "Mother Courage" last year was just terrific.

My friend and classmate Leonard Borden observed early on in our conversations about cancer that his liberal arts education was indispensable to his ability to combat and survive the disease (not to mention our health care system). I have always appreciated my Knox education, but never more than now. The support of Knox classmates and professors remains invaluable. So does the intellectual infrastructure I acquired there. It sustains me, and I am deeply grateful.

Day 3: Another Man in My Bathtub

2008-01-10T21:45:00.000-06:00

David P has been a superb captain this week, and is the latest addition to the "Men in My Bathtub" portrait series. Here he is laying down some anti-skid tapes to prevent me from slipping in the tub.

Today he drove me to radiation treatment #3 of 30, followed by acupuncture. Tomorrow radiation moves to the more comfortable hour of 8:30 a.m. If my energy permits, I'll go to yoga at Gilda's Club tomorrow after radiation.

I actually managed to do a little work this afternoon, courtesy of Kym and Giudi, which will help to offset some of the acupuncture and other costs. That's it for tonight. I'm heading in. Love to all.

Breathing Easier

2008-01-09T21:45:00.001-06:00

I sat down to meditate tonight, and it seemed to me I am breathing easier. Whether this is due to the steroids that are coursing through my system, to the chemo, the radiation, to all or none of the above, it's nice, and I'm enjoying it. Those antinausea drugs are working wonders, and I am very grateful.

I thought I would be featuring photos of radiation therapy for your viewing pleasure, but given that I left the house at 6:45 a.m. , I didn't even think about pulling out the camera once I got to Treatment Room A.

I did, however, pull out the camera for Cecelia O'Connell's 92nd birthday celebration tonight at the far more civilized hour of 8:30 p.m. Cece's daughter Mary took the snaps. If John McLarnon is reading this, I hope he takes note. Cece would like to go back to Ireland this summer, and I would like nothing better than to introduce John to Cece. I believe you would enjoy one another immensely.

The O'Connell family had another blessing to celebrate: the birth of Claire Cecelia to Mary's daughter Sarah Bush and her husband Hap Bryant. Born at 11:40 p.m. January 8, Claire Cecelia weighed in at 6 pounds, 15 ounces. A very welcome -- and beautiful -- addition to the family. See for yourself:

And yet two more blessings: Mary's nephew Patrick O'Connell was present at the birthday party. He and his wife Brenda were in a terrible car accident not too long ago. We have all been praying mightily for them, and while Brenda is still mending, it was a joy to see Patrick.

So with these glad tidings, I bid you goodnight. I have radiation again at the crack of dawn. As of Friday we move to 8:15 a.m., and possibly next week to 8:30.

Day One in Pictures

2008-01-08T20:43:00.000-06:00

To embroider on yesterday's theme: I left the house at 7:15 a.m. in company of the indefatigable Giudi W, and did not return until 8-ish in the p.m. So I thought to do a quick blog tonight: Day One in Pictures. Uploading is usually a snap, but tonight, the software forced me to Kodak's web site for an upgrade that took 45 minutes. So Day One In Pictures has not been quick, and we just never know what will happen.

For readers who want the bottom line, today went fine. Chemo is long - a couple of hours of saline and various preparatory (anti-nausea) medicines and electrolytes and whatnot go in through my handy chest port prior to the 2 chemo drugs, one which is infused over 10 minutes, the other over about 2 hours.

Meet Cathy, my oncology nurse. She is emailing this photo to her mother and worried that her mother will wonder why she hasn't had a haircut.

Below you have a view of the patient on Day One, the patient's view,

lunch with Francine, who took over from Giudi at mid-day, and a beautiful horiatiki salad that I enjoyed with Francine at dinner in Greek Town. Thanks to the fact that I'm chock full of steroids, and to the wonders of anti nausea medications, my appetite remains intact.

Following lunch we proceeded to radiation, which took longer than usual

because they had to take a bunch of X rays, and because afterward we schmoozed with the radiation therapist, who I thought had gone home for the day. Coming soon, perhaps as early as tomorrow: Radiation in Pictures. I didn't document radiation today, and now I am retiring, given that I'm leaving the house at 6:45 tomorrow, in company of Captain David P.

Good night all, and many thanks for your kind words and support.

The Night Before

2008-01-07T20:54:00.000-06:00

In 1992, shortly before my first trip to Zimbabwe, I went to the library and took out an album called "The Soul of Mbira." It was recorded by Paul Berliner, an ethnomusicologist from Northwestern University, and featured the traditional music of Zimbabwe, unembellished. Among the musicians was Ephat Mujuru, whose family is now my family. At Bernliner's suggestion, I had written to Ephat and asked if we could collaborate on a book of tales of the Shona people, and he had said yes. So I thought I should try to find out who this man was.

I put that album on the stereo in the late afternoon, and lay down on the living room floor on one of my big comfy pillows to have a listen. I had never heard anything like it. The first time through I didn't quite know what to make of it. The music was repetitive, hypnotic, and very, very strange. It just blew me away. I must have played it through three or four times, and each time I heard a little more, the most subtle variations, very contrapuntal. You have to pay attention to Shona music. It's not for cocktail parties.

I lay there until well after dark, just listening. And I remember thinking: nothing will ever be the same.

Of course, this is true every time we go to sleep: when we wake up, nothing will ever be the same. It's true every time we leave the house or get in the car or meet a new person or read a book or hire a new housekeeper. Or take a breath.

But we like to think we know what's going to happen. We like to think that the important people and things in our life will remain the same.

It's the night before my first chemotherapy infusion and blast of radiation, and I know I don't know what's going to happen. For now, that's just fine. My friend Kate, returned from Colombia, came over with a pot of white bean chili (exactly what I had planned to make for dinner). Laura T joined us and meditated with me for half an hour after Kate left. I'm about to jump in my nice new shower and get ready for whatever lies ahead.

Nothing will ever be the same. But then, nothing ever is.

Bearing the Beams of Love

2008-01-04T21:37:00.001-06:00

My heart is so full tonight I hardly know what or how to write. Here are some ways that love has manifested in my life the past couple of days:

A dear one took me to lunch before leaving for New Hampshire, and then emailed an invitation to Barack's Inaugural Ball on January 19, 2009. I have put it on my calendar.

A friend in Kansas City whose son fought and won a battle with leukemia sent a beautiful paper crane. When her son was sick, she wrote, a friend gave him an antique mobile from China with 1000 paper cranes -- for peace, love and healing. The friend told her son that when he was better he should pass it on to someone else in need of healing, which her son did. "So I am sending one crane for peace, love, and healing," she wrote. "I believe one will be enough."

Buddhist friends in Canada sent a yukata, the Japanese summer cotton kimono, to wear during treatment, along with a generous gift for my Zimbabwe family. Two other people made or promised contributions for the Zimbabweans.

Members of my godmother's family sent notes and prayer cards. I haven't seen them in many years. Cards with Frida Kahlo images came from France and Hyde Park, along with many emails from well wishers. My beloved 93-year-old friend in Northern Ireland, John McLarnon, phoned when I was out.

I'm about to watch the news wrapped in a beautiful handmade quilt, a gift to help me through treatment. My upstairs neighbor offered to make extra food when she cooks for herself and bring it down or freeze it for me. Several more people have volunteered to help out. I'm told the volunteer list now numbers more than 70.

When I was a young English major at Knox, some lines from William Blake wrote themselves on my heart:

And we are put on earth a little space,
That we may learn to bear the beams of love.

I am learning. Slowly. But I am learning.

Start Date Now January 8

2008-01-02T13:26:00.000-06:00

Just got off the phone with a radiation therapy resident, who tells me they want to start Tuesday, January 8. Chemo will be in the morning, radiation at 3 p.m. On Tuesday they will give me a permanent time slot for daily radiation. I want 8:30 a.m. If this is not open, they'll give me the closest available time slot and put me on a waiting list for 8:30. The resident let slip thatthe chief radiation therapist, is out of town and won't be back til Monday. Perhaps this is why I am not starting treatment until next week.

New Start Date: Monday, January 7

2008-01-02T12:00:00.000-06:00

I just got off the phone with the clinical trial director, who tells me I will be starting treatment January 7, not tomorrow. I'm not exactly sure why. Monday when I was reviewing the protocol I noticed it calls for a B12 shot a week before beginning chemo. I emailed the director saying I have not received this shot and asking whether this is a problem. Just now he was vague on the phone as to why I didn't get the shot Dec. 26, when I met with him and the oncology nurse. He told me I will get the shot tomorrow at 11, when I meet with my oncologist, who presumably will make everything clear. I am disappointed, but what can you do.

Zimbabwe on My Mind

2008-01-01T14:35:00.000-06:00

I spent December 2006 in Mbare, the oldest township of Harare, the capital of Zimbabwe. This was my fourth trip to Zimbabwe, and the first where I lived like most Zimbabweans, instead of like a rich American visitor. I stayed with the Timbenawo family, who named their daughter after me, and who have become my family over the years.

In Mbare, it’s summer in December—the rainy season. Early mornings are cool, but the heat and humidity start to build by 10 and continue until huge cumulonimbus clouds release their rain, or until the sun goes down, whichever comes first. When the rain comes, it comes hard, and we put rags under the door. After a bad storm, the water on the streets can reach mid-calf.

I shared an 800-square-foot house with Linford and Martha Timbenawo and their children: Gladys Valjean (my namesake, then aged 8, now 9) and John Davies, now three. The family rented out what used to be their kitchen, so their living space was reduced to maybe 550 square feet. The house heated up like an oven as the day went on.

I shared a bed with Gladys Valjean. She is a mararo—she thrashes in her sleep, hogs the bed, steals the covers. Once I woke up with her hand in my mouth. I love her fiercely. She has the most amazing skin: it glows copper when the sun rises. She can sleep in any position whatsoever. It makes me happy just to look at her.

Just before dawn, the birds would start to sing, then a rooster would crow. Then you would hear the swish-swish of women starting to sweep and clean, and not too long after that, the lady next door would start in. She is the neighborhood alarm clock. Her whole family is very loud.

On Christmas Day 2006, Martha and I started cooking at 7 a.m. on a two-burner hotplate. By 1 p.m. dinner was ready. The extended family ate in two shifts, plates on laps (no dining room or table). Then we danced until after the sun went down. I will never forget it.

Zimbabwe was in bad shape last year, but nothing like this year. There are only 3-4 hours of electricity per day, from roughly midnight to 4 a.m. Any hot-plate cooking or boiling of drinking water must be done then. Last year the inflation rate was maybe 2500 percent. This year it's 24,000 percent and skyrocketing. Linford, the father of the family, has been selling tchotchkies to tourists in Johannesburg, living away from home for several months at a time. He sends money home when he can, and equally important, sends groceries and supplies -- rice, beans, soap --which are very hard to come by in Harare.

He came home for Christmas, and the family has been struggling with decisions about their future. Elections are scheduled for March, and there is likely to be violence in the township where they live, a hotbed of opposition to the regime. One option is to move Martha and the children for a few months to a low-density suburb near Gladys Valjean's school for $100/month rent -- an exorbitant amount for them, but affordable thanks to the generous donations of guests at my Christmas open house, which raised $677 for the Timbenawos. I will match this amount. Many, many thanks to all who contributed.

Another option is to move the whole family to South Africa. To do this, they will have to pay $300US for travel documents for the children, plus the cost of moving. Then there is the question of where and how to educate the children. South Africa is crawling with millions of refugees from Zimbabwe, many of them much more highly skilled than the Timbenawos. Housing and jobs are hard to find, there is a great deal of resentment toward Zimbabweans (and other immigrants) on the part of many South Africans, and the Timbenawos would be far from the support and love of their extended family.

I cannot advise them from here but have told them I will do my best to support whatever decision they reach.

We used to communicate weekly via the grandfather's land line, but that telephone is on the fritz, so communication has become difficult. Text messages are an option, and we also email - but to do so Martha or Linford or both have to go to town to the Internet cafe, a trip that can take half an hour to an hour in a crowded minibus. Often when they get to town the Internet is down, and they have to turn around and try again the next day. I sometimes phone their cell, but it's hard to get through, and hard to hear and understand one another through the static when I do get through.

I have not yet told them about my illness, but I must do it soon. They sent me a text-message yesterday wishing me a happy new year, and I text-messaged back that I would try to phone their cell today. It's 9:30 p.m. in Harare as I write this, usually a good time to reach them -- the network is not so busy at night. I am not going to try to have this conversation on the phone, but I will ask them to check their email as soon as they can, which will force me to write to them. Their last email contained details of rental and passport costs, as well as the news that the headmaster of Gladys Valjean's school has resigned. He has been doing yoeman's labor to keep the school going, and I fear his departure will mean a rapid decline of educational standards, if not the closure of the school itself.

To the donors to my African family, many thanks for your generosity. Your support will help tremendously, whatever the family decides to do, and that, in turn, will help me because I know they will be provided for. Blessings to all for the new year.

Getting Organized

2007-12-30T16:54:00.000-06:00

An infrastructure for supporting this battle is beginning to take shape. My cousin Sarah and I have roughed out a system for tracking/approving/paying bills. Giudi W (blessed be she) and I spent 3-4 hours setting up a filing system. Some of the "Share the Care" captains met this morning and roughed out as much of a system as can be roughed out at this point for the month of January. I won't know my radiation schedule until Jan. 3 at the earliest, and my time slot may change as the month progresses. A patient requests a preferred time, and if/when that time opens up, they slot you in. At the suggestion of the oncology nurse, I'm aiming for 8-8:30 a.m. M-F. Chemo will be once every 22 days, which I think means that my next chemo (after Jan 3) will be Jan 24. Acupuncture will be 2X/week if I can manage the travel; that schedule, too, will depend on the radiation schedule. We're looking at ways to link through this blog to the weekly care schedule and the rotating captains' schedule. Anyway, I'm feeling reasonably well prepared for treatment, and eager to get underway. Anxious, too, of course. But I guess that comes with this territory.

My Birthday in Pictures

2007-12-29T17:20:00.001-06:00

As I write this, a pork tenderloin is roasting in my oven with apples, onions, and fennel, filling my apartment with appetizing smells. I figure I better enjoy my own cooking now, while I still have an appetite, and while I'm trying to bulk up.

I didn't write yesterday for two reasons: first, I left the house for the hospital at 7 a.m. and didn't return til almost 6, by which time I was sorely in need of a nap. Second, after my nap I celebrated my 60th birthday at a beautiful dinner hosted by my beloved friend, neighbor, and colleague Kym Abrams, in the company of a few close friends, whom you can see here, albeit not very well. It was a memorable party, very relaxed, great food, and just what the doctor ordered, you should pardon the expression. But by the time I got home I was ready for bed, not blogging, and so I retired without writing.

What was I doing at the hospital all day? First, getting a baseline CT scan, so that the doctors can see whether and how much the tumor is shrinking once treatment starts. The scan was not precertifed until 10 minutes before I went into the tube. This approach to precertification is apparently common practice at the Robert H.Lurie Comprehensive Cancer Care Center. They tell me it's not uncommon to receive authorization only AFTER the procedure has been performed. I find the practice decidedly disconcerting. On the up side, there was a message on my machine when I returned from the hospital that my chemotherapy has finally been authorized. This is very good news indeed and helps to set my mind at ease.

The second thing I was doing at the hospital was having a port placed in my chest, through which chemotherapy can be infused, and from which blood can be drawn as necessary. This will eliminate the need to puncture me and put a new IV in place every time one is needed. At the end of treatment the port will be removed, and as one nurse explained, everyone in the interventional radiology department will do a little dance. The little round blob in the upper right corner of the X-ray shows the port in position. You cannot see the catheter that extends from the port into an artery that goes to my heart, but there is a catheter nonetheless, and let us all hope it stays where it is supposed to stay and does what it is supposed to do, given the recent plumbing difficulties at home.

For those of you who have been following the plumbing saga, I now have a new shower head, temperature control and faucet, thanks to the good offices of Mary's plumber Bernie, who was cheaper than Tony by several hundred dollars but nonetheless darned expensive. I did not add Bernie to my photographic series titled "Men in My Bathtub," but I DID document the fabulous Ken D at work. He was here until 9 the night before my birthday drywalling and tiling the hole in the wall left by Bernie. Ken pronounced Bernie's work "excellent," and I am immensely relieved, both that Bernie knew what he was doing, and that I can now put the whole episode behind me.

My pork roast is ready, so I will sign off and set the table. Bob S and I will be leaving in an hour to go see Bette Davis in "All About Eve" at the LaSalle Cinema. Do we know how to have a good time or what? Much love, and hearty appetites to you all.

What Stands in the Way Is the Way

2007-12-27T16:59:00.000-06:00

The plumber who was supposed to arrive at 9 this morning arrived at 1:40 p.m. instead. He just finished working, and my friend Ken is now doing the drywall. I am scheduled for a CT scan tomorrow at 7:30 a.m. and cannot find out whether I am precertified. The precert lady at the cancer center went home without responding to the two messages I left for her, and when the Patient Services Rep called Unicare (my insurer) to inquire about my precert, Unicare said they were waiting for additional clinical info from the precert lady. I phoned the director of clinical research, who told me yesterday to call him with any paperwork or administrative problems, but he tells me he doesn't do insurance. I still don't know if I'm even precertified for chemotherapy, but that's another story, and we have til Jan. 3 to sort that out. There's nothing to do but await developments tomorrow. I have canceled my meditation group tonight because of the work that is still underway in my bathroom. But I will meditate alone on a comment by one of our group: What Stands in the Way Is the Way.

Waiting

2007-12-26T13:38:00.001-06:00

As I write this, I am waiting for a plumber. I am also waiting for an attorney to review the consent form for the clinical trial, which the hospital will probably want me to sign when i go see the oncology nurse in two hours. I am also waiting to see if the insurance company will pre-certify the clinical trial.

Regine, the precertification lady from Northwestern Memorial, faxed information on the trial to Unicare, my insurance company, on December 20. I phoned Unicare 12/21 to see if the fax arrived; the customer service rep told me Unicare's reviewing nurse was "in the file" when she (the customer service rep) looked it up on the computer, and because 2 people can't be in the file at the same time there was no way for the rep to check whether the fax had been received. However, the rep told me that since the nurse was in the file, she was probably reviewing the fax, so I could safely assume the fax had been received. Today Regine (the hospital's precert lady) called to say she had checked with Unicare on my precertification, and Unicare had NOT received the fax. So Regine re-faxed, Unicare confirmed receipt of the fax, and now it will take another 72 hours for Unicare to review the contents of the fax. Regine will phone Unicare again tomorrow to see if she can speed up the precertification process. I am supposed to begin radiation therapy January 3. Aargh.

I am also still waiting for forms from my insurance company that will authorize my cousins to run interference with the company on my behalf. I am also waiting to find out how to authorize my cousins to access my medical records. I have one authorization form from Northwestern Memorial Faculty Foundation, through which doctors' bills are processed, but I may need a second authorization form from the hospital itself.

On the bright side, the sun is out, and we had a lovely party Christmas eve. I had a lovely shower and brunch at my friend Francine's on Christmas morning, and dinner with my Oak Park cousins Christmas Day. I hope you all enjoyed the holiday, and that the new year will bring many blessings.

Goodbye Frida. Hello, Plumber?

2007-12-24T15:08:00.000-06:00

I was thinking of canceling the trip to Minneapolis anyway. The restorative power of art (and Frida Kahlo) notwithstanding, the idea of getting to the airport two hours early, schlepping a carry-on bag all over O'Hare, sleeping two nights in a hotel when I'm not sleeping that well in my own bed, and then turning around and going back to O'Hare was rapidly losing appeal. Then Tony the plumber called this morning. His parts-meister has told him that the plan he proposed yesterday is not likely to work, and a better plan is to open up the bathroom wall and replace the entire assembly (shower head, handle, faucet, and drain), to the tune of $1899 (plus the $400 I paid him yesterday) . Tony generously offered to waive the $69.95 dispatch fee again.

This news in hand, I made my first visit to acupuncturist Dr. Fang Lin in Oak Park, at the offices of the famous Charles Lo, M.D., whom Leonard visited prior to his (Leonard's) spontaneous remission 20 years ago. I don't expect Dr. Lin to cure the cancer, but I expect she will help me survive the treatment. She showed me several acupressure points to work on when my hands (and feet, and knees, and elbows) are free, and I like her very much. I will visit her once a week prior to treatment and twice a week during treatment, as long as I'm able to travel.

I'm canceling the trip to Minneapolis in hopes of obtaining additional (and lower) estimates from two reliable plumbers and getting work on the bathroom finished before I start treatment Jan 3. I have a plumber's name from Giudi Weiss, I've left a message with another referral from Ken Davis (who might be in Mexico, Ken isn't sure). If anyone knows a good plumber who is used to working in old buildings like mine, shoot me an email pronto with contact info.

Meanwhile, merry merry and happy happy, and stop by my place anytime today between 3-10. Peace on earth. And love.

Stop by on Christmas Eve

2007-12-23T08:08:00.001-06:00

I will be having my annual Christmas Eve open house December 24, 3-10 p.m. . There will be a pot of Polish mushroom barley soup on the stove, and another pot of soup for vegetarians. Cook your own pierogis, have some ham or kielbasa, and break oplatki with me (if Halina brings it). If we run out of food, we'll order pizza! If you'd like to share the spirit of the season, you're invited to make a contribution to my Zimbabwe families in lieu of a gift to me. I'll match your donations dollar for dollar.

The first (fairly impromptu) meeting of our "share the care" steering committee is happening in a couple of hours. I hope we'll get the beginnings of a system in place for helping out during treatment. As far as I know, radiation starts Jan. 3 at 2:30. I'm meeting Dec. 26 with the oncology nurse (they still haven't told me what time). Presumably after that I'll have a better sense of treatment details.

The broad outline for treatment is 6-7 weeks of radiation M-F, concurrent with two rounds (6 weeks) of chemotherapy. After radiation ends there will be another two rounds of chemo (a round is one week on, two off). So the total time will be about 13 weeks. My oncologist says by Memorial Day I should be back to whatever normal is going to be from here on in.

I should be fairly functional for the first two weeks or so of treatment, then the cumulative effects will begin to take their toll. According to my oncologist, weeks 4-6 are the most difficult. Two friends from out of town are trying to arrange to come stay with me during that period. I may need one more person to stay here for one of those weeks. If you're interested/available, watch this spot for more details on whom to contact (after Christmas).

This may be my last blog entry until after that meeting with the oncology nurse December 26, and possibly until December 30. At the moment I'm planning on spending my December 28 birthday in Minneapolis with my dear friend Mary. The plan is to get on an airplane the evening of the 27th, have a nice brunch on Friday, and spend the day at the Frieda Kahlo exhibit at the Walker Arts Center. We'll have a nice dinner, take in some music or a play, tour the Guthrie the following day, and be back home by 8:30 on the 29th.

I wish you and yours a happy and healthy holiday, filled with love and appreciation for friends and family. Peace.

It's the Little Things

2007-12-22T11:02:00.001-06:00

Meet Tony of Bishop Plumbing, who arrived here around 8:30 this morning and just left. I had to sign a contract with him just to diagnose my problem; Bishop Plumbing's diagnosis fee is $214.75, which doesn't include the cost of fixing whatever problem is diagnosed. Tony waived the $69.95 dispatch fee (lucky me). To diagnose the problem he had to turn off the basement water valves to all three apts. in the building. It seems that a couple of these valves were installed when the building was built, in 1917, and before he would touch them he went into great detail about possible dire side effects of working with them. Sound familiar? Fortunately, none of these dire side effects occurred. I find this hopeful. Tony then removed my faucet, diagnosed the problem as defective O rings in the cartridge. The O-rings in the cartridge are smaller than my finger nail. There are 5 of them, of which one was missing, one was half gone, and I dont remember the rest. Tony's plumber's kit includes 60 different sizes and shapes of O-rings, none of which fit my cartridge properly. Tony observed that replacement O-rings seldom fit cartridges like mine, which are designed so that the entire cartridge has to be replaced, at great expense. He gerry-rigged some replacement O-rings, turned the water back on, and the stream from the faucet is now slightly heavier than it was after Bob left last night. Tony has to order a new cartridge, which will not arrive until Christmas eve at the earliest, possibly not until after Christmas. My cat is delighted. I am not so delighted, but what can you do. The total bill for this little adventure in home maintenance will come to somewhere around $660 (plus whatever it costs for a new wall plate; Tony's parts book didn't feature the wall plate, so he will have to look it up when he gets back to the office). Tony noticed all sorts of other problems with the plumbing in the basement (besides the ancient shut-off valves, which he says if we don't replace them now there will come a time when we'll need to shut off the water and won't be able to). Tony will write up a modest proposal for fixing those.

I will now take a deep breath and turn my attention to making soup for Christmas eve. My friend Nancy Gardner is coming over shortly to help get this party together, and tomorrow morning our "share the care" steering committee meets. Onward.

First tatoos

2007-12-21T22:02:00.000-06:00

This is Virgil. This morning he gave me my first tatoos when I went for my mapping CT scan. The technology is amazing - data from the scan goes directly into a computer, which crunches gazillions of bits and bytes to figure out a plan for delivering maximum burn to the cancer and minimum harm to everything else. The plan then goes to plain-speaking radiation oncologistDr. M, whom we met yesterday, who blesses or refines it as she deems fit. Someone left a message that my treatment will begin January 3 at 2:30. I find this odd, since Jan. 3 is a Thursday, but presumably it will become clear as this unfolds. Given the Christmas holiday, I'm not meeting w. the oncology nurse until 12/26. Presumably at that time she will answer whatever questions I have.

This is the view lo0king up from the bed of the CT scanner, before you go into the tube. Anyway, after the CT scan I had a solemn and definitely chilling talk with the radiology nurse about possible side effects, which I really don't care to go into. As the nurse pointed out, the alternative -- not undergoing radiation therapy-- is even less palatable than potential side effects. When I got home I had a chat with the young pulmonology fellow, the intelligent and compassionate Dr. K, and he assuaged my fears somewhat.

My new housekeeper was supposed to come yesterday but couldn't find my place, so she came again today, and again couldn't find it, so after she phoned I went to pick her up at Potomac and Hoyne. I showed her around the place, gave her a set of keys, and slipped out for a haircut. Upon my return, the drippy bathroom faucet had developed into a waterfall--I don't know what she did when she was cleaning the bathroom, but I couldn't turn off the water. I left two messages for my plumber between noon and 4:30, and finally called my friend Bob S, who arrived within an hour and managed to reduce the flow to a medium trickle. At this writing, a plumber is scheduled to come tomorrow morning.

Here is Bob doing one of many good deeds. Can you tell I'm figuring out how to upload pictures to my blog? Anyway, I am ending the day in much better spirits than this morning.

My Christmas eve open house is on, as far as I know. Come early, stay late (3-11). I was going to try to see an acupuncturist tomorrow, but I have to deal with this plumber first. Maybe Sat. afternoon. I will be meeting with some steering committee members Sunday a.m. to get the ball rolling on organizing all you volunteers. For now, good night and many blessings, and I hope to see you Christmas eve.

Going for the clinical trial

2007-12-20T22:27:00.000-06:00

I've opted for the clinical trial, though I still haven't received precertification from the insurance company. This morning I was summoned to the hospital on an hour's notice to meet with the radiation oncologist, a direct, fairly blunt woman who informed me that the radiation is going to cause impaired lung function, so don't come to her in two years' time complaining that she didn't tell me. I like her nonetheless.

She wants to "map" me right away and made an appointment for a special type of CT scan for 8 tomorrow morning. I told her I wasn't precertified. She said to sit tight and she'd contact the oncology nurse who is allegedly handling precert. A half hour later or so the radiation doc told me I AM precertified, and her minions proceeded to do what they do. When I returned home, I decided to check w. the oncology nurse, who told me I'm certified for CHEMO, not RADIATION. This led to half an hour on the phone w the insurance company, which told me I am NOT certified for chemo, certification is PENDING receipt of clinical info from the hospital and authorization by an insurance nurse. They also told me precertification is NOT required for radiation therapy, despite the fact that last week they told me it IS required.

On the bright side, the hospital faxed the form that allows me to authorize my cousins to access my medical records, so THEY can deal with the insurance company on my behalf. I am still awaiting the forms I requested several days ago from the insurance company that will authorize my cousins to represent me.

I do not yet know when treatment will start, but the sooner the better if you ask me. I can feel this thing progressing.

A Seat at the Table

2007-12-20T03:12:00.000-06:00

A couple of weeks ago, Leonard Borden was telling me about his fight against kidney cancer. He would visualize his white cells as an army of samurai attacking the enemy cancer cells. That imagery wouldn't work for me. I would send a swarm of Polish housekeepers to clean and scrub and vaccum and polish every last cancer cell out of my body.

When I was 17 or 18 and home from college on vacation, my mother, my godmother and I went to visit the matriarchs of my mother's side of the family, a pair of sisters who owned a 2-flat at 2511 N. Springfield. Eugenia Cybulski Abrams came to America from Poland in 1907, at the age of 17, crossing the ocean alone, with no English, and making her way somehow from Philadelphia to relatives in Chicago, among them my mother's mother. Chicago was a real cow town then, with unpaved streets and few amenities. "I lost my shoes in a mud on Chicago Avenue," Eugenia told me once. "It was a much worse life than Europe. But I never made complaint to Europe once."

Eugenia's sister, Eleanor, joined her within a year, hoping to work for a little while, make some money, and then go back to Poland. World War I interfered. The sisters built a life here together. Eugenia worked as a seamstress for Hart, Schaffner and Marks, where she met her husband, Michael Abrams. The couple bought a 6-flat on Cornelia Street, lost it to the Depression, started all over again. Eugenia fought and won a battle with tuberculosis. Her husband Michael went out for a paper one day, was hit by a car and killed. Eleanor moved in, and the two women raised Eugenia's son and daughter together, much the way my mother and godmother raised me. Eleanor worked until the age of 75 making sandwiches for Harding's cafeteria. The sisters grew old and became Busia and Cioc, grandma and auntie, the much-loved heads of our family.

The heart of the sisters' apartment in the two-flat on Springfield was the kitchen at the back of the house, and the heart of the kitchen was an oval formica-topped table, with little flecks of dark and light grey, surrounded by aluminum-tube chairs with red naugahyde seats and backs. That day when my mother, godmother and I went to visit, the sisters must have been in their late seventies, my mother and godmother in their late fifties--my age today. Eugenia's daughter was there, and also a neighbor lady, maybe 90 years old, who sat to my left.

At 17, I was the youngest person in the kitchen by maybe 40 or 45 years. At one point I noticed that every woman there, including me, was sitting straight-backed and alert, hands folded in front of her and resting on the table. There was so much power in the room at that moment it would not have surprised me if the table had started to levitate. I remember wondering if I really belonged there, if I would ever be as strong as these forbears.

Just now I awoke from my first full-fledged night sweat. That kitchen table was at the front and center of my consciousness, all those women strong and clear. I did and do belong among them. I am one of them, and I have earned my seat at the table, and they are with me. I am facing a formidable foe, but I have strong allies, and I can do this. I can prevail.

Long day

2007-12-19T21:05:00.001-06:00

Spent 5 hours at Rush getting a second opinion. Registration was about 2 hours. Short version: the Rush guru says go with Northwestern's clinical trial, on grounds of fewer side effects and potentially much better outcome, even cure. I have some more due diligence to do tomorrow, but that's the direction I'm leaning in. On the bureaucratic front, my insurance company wants info on the clinical trial to present to their review panel of docs/nurses before they will cover it, and I've run into some snags making this happen. Believe I may have been talking to the wrong person, and hope I've now emailed the right person. My oncologist's physician assistant phoned a message saying not to worry about financing the treatment - I left a message saying that I'm reluctant to take on a few hundred thousand in medical bills without knowing what portion, if any, will be covered by my insurance. I'm feeling more hopeful about the clinical side, and figure that eventually the bureaucratic snafus will sort themselves out. Nothing more profound to share tonight; am headed for a nice bubble bath, a half hour on the meditation cushion, and bed. If anyone knows a good health insurance attorney, email me. Love to all.

Condo for rent, Puerto Vallarta, Jan 11-18

2007-12-19T05:10:00.001-06:00

Instead of celebrating my 60th in Mexico with old friends from high school, I'll be in treatment. Which means that our condo is available. Beautiful 2 BR apartment, $250/night, $1750 for the week, sleeps up to 6. If interested, contact Paul Bernholz & Associates, mention Vista del Sol #309 for those dates. Email paul@paulbernholzassoc.com with copy to fran@paulbernholzassoc.com. In US, 310.598.5775, in Puerto Vallarta, 01152.322.225.9106.

Learning curve

2007-12-18T22:09:00.001-06:00

Met w. oncologist at Northwestern, today. She presented two treatment options: one the standard approach to this disease (2 cycles of chemo concurrent with 6-7 wks radiation, possibly followed by 1-2 more cycles of chemo), the other a clinical trial using a different drug but similar schedule (2 cycles chemo concurrent with 6-7 weeks radiation, definitely followed by 2 more cycles of chemo). Tomorrow I get a second opinion from a guru at Rush. Leonard continues to be invaluable as a guide to how to approach decision making and also as a researcher and information source. He may come with us tomorrow to see the second-opinion guru. "Us" is Giudi Wand me. Giudi has been a superb recording secretary. There is a steep learning curve with this stuff, and not much time to climb it, so I'm asking people not to phone for a few days so that I can focus on what I need to focus on. Please don't be offended if I don't get back to you right away. I will get back to you eventually. Love, Valjean

Testing finished. Now, treatment options

2007-12-17T17:47:00.000-06:00

Finished lung function tests today, picked up path slides, 3 path reports, MRI report, pulmonary notes, PET scan report, all for faxing to second-opinion doc. This required visits to 3 floors of the hospital and one office across the street. Minor victory this morning: determined that the radiation oncologist my doc wants me to use is in the Unicare network WITHOUT PHONING UNICARE. Took only 10 minutes and 4 phone calls to (1) doc's office (2) physician billing (3) hospital billing (4) back to physician billing. Meet tomorrow with oncologist to discuss pros/cons of 2 different treatment approaches. Once treatment approach and schedule are set, watch this space to find out whether Christmas Eve open house is on or off (at this writing, it's on, but you never know). Much love.

Winter wonderland

2007-12-16T21:50:00.001-06:00

We had a big snowstorm last night, and this morning when I woke up, there was a winter wonderland outside my office window. I will attempt to upload a photo in a minute. Several long-lost friends have re-emerged, one of the many gifts of this cancer. Have had a too-busy day today, so will not write more. I find I need more quiet time than usual these days. Much love to you all.

Pies from scratch

2007-12-15T14:51:00.000-06:00

I probably buy bananas 2-4 times a week. I like to start my day with a banana and a capuccino, and I often snack on another banana or two during the course of the day. I ran out of bananas last Wednesday, with no chance to get to my local store. Kate G presented me with a bunch, unasked, when she picked me up for my PET scan on Thursday.

So my day today began with a banana from dear Kate. It continued with an offer from my cousin Sarah to help me manage interactions with the insurance company. She has had a lot of experience sorting out claims associated with her son Rob's long illness. Sarah is not the only person to have offered help with this. Three others have come forward, including my graduate school roommate in Kansas City. Now a fourth--I just got off the phone with my cousin Noreen, who also volunteered for the insurance committee. Noreen's son John has had multiple health problems since birth, and Noreen has done a superb job managing his care and his insurance claims.

Today, at the suggestion and in the company of a new friend, Laura S, I visited Gilda's Club-Chicago and decided to become a member. One issue that has concerned me is how to manage the 40+ people who have volunteered to help me as I go through treatment. If we can't figure it out ourselves, Gilda's staff can help us get organized. They also have a monthly networking meeting for people living with lung cancer.

As I look around my house, I see art, books, food, clothes, music and more from loved ones near and far, alive and dead. My life and yours are intertwined in ways known and unknown with billions of other lives. I couldn't write this blog without countless teachers, without the people who mined the uranium that powers the plant that provides the electricity that sends the data, without the immigrant labor that built my apartment, the people who work at the phone company -- you get the idea. As a friend observed recently: "If you want to bake a pie from scratch, first create the universe."

Brain and bones okay

2007-12-14T15:08:00.000-06:00

Dr. P, my pulmonary oncologist from N'western Memorial, just phoned to say preliminary reports of PET scan and MRI of brain say the cancer is confined to my chest. Have a good weekend, everyone. I certainly intend to. xox

Kindness spoken here

2007-12-14T13:45:00.000-06:00

Dave Fiore has been my dentist for more than 20 years - I think I was among his first patients in the early 1980s. His work was cut out for him. The only other dentist I had ever seen was a friend of my mother's from the old Polish neighborhood, who didn't believe in continuing medical education and once told me that flossing could harm my gums. In Dr. Fiore's old office on Halsted Street, there used to be a sign: "Kindness spoken here." Dr. Fiore's hygienist, Amy, is one of my favorite people. I just came back from their office, where I went to get my teeth cleaned ( I don't want to go into treatment with a mouth full of plaque). At the end of my hour, Amy presented me with a card signed by everyone in the place, plus a soft sweater and scarf to keep me comfy to and from treatment. Dave held my hand. We all had a cry and a hug. The universe provides.

Now to track down my pathology slides and path report and the other paperwork I need to bring with me to my second opinion appointment next week. After that I have some reading to do to prepare myself to understand what these docs are talking about. So most likely I will turn off the phones for a while. Please don't feel offended if you're trying to reach me. I will get in touch eventually, but I've been spending hours on the phone every day, and for the next few days I need to focus on getting educated. xoxo

Why we need health care reform

2007-12-13T13:58:00.000-06:00

This is my only chance to write today, so I'll make it quick. Feel good physically, am heading in a couple of hours for my PET scan, which will leave only one more test for Monday (pulmonary function). Am meeting Tuesday at 2:40 with pulmonary oncologist, presumably to get her recommendations. Decided to make appointment today with a lung cancer guru at Rush to obtain a second opinion, and phoned insurance company to inquire whether this was covered. This led to more than half an hour on the phone with Unicare, mostly on hold. The initial customer service rep couldn't find the name of my guru in her system. I asked her to check onN'Western Memorial and Lurie Comprehensive Cancer Care Center, while I had her on the phone, and she said that Northwestern Memorial's contract was canceled August 31. Someone from Unicare told me this the other day, too, though Northwestern assured me there's not a problem. I explained to Unicare that NMH and my docs are all listed as participating providers on the company's web site, and she said the web site is out of date. Since AUGUST? How long does it take to update a web site? I had a mini-meltdown and started working my way up the food chain, and eventually received assurance from a supervisor who identified herself as "Kristi B" that the two institutions are participating providers. Then we turned to the question of the second-opinion guru, who is listed on Unicare's web site. Kristi said she couldn't find him in her system. She told me that it is my responsibility to phone Unicare to verify participating provider status no matter what the web site says. Then she either hung up on me or we were cut off. I suspect Kristi was looking up my guru at Northwestern, not at Rush, but I am rattled and cannot take another half hour on the phone with Unicare right now. I'm sure this will all work out, but these interactions so far have been the most upsetting aspect of this whole experience.

On a brighter note, had some lovely conversations and email exchanges earlier today with family and friends. There is so much love in my life, I am truly blessed.

Brain MRI

2007-12-12T17:32:00.000-06:00

Had an MRI of brain this morning. No big deal - it was like being strapped down at a very bad punk rock concert. Learned I'm not claustrophobic. Tomorrow night, a PET scan. Met a social worker by phone, ordered a reference book through link from Leonard, who continues to be invlauable, got some invoices out. Spent some time on the phone w. my insurance customer care representative. Some docs at Northwestern are in the preferred provider network, some are not. This is going to be fun. Customer care rep couldn't tell me if care provided through Northwestern's Lurie Cancer Center is covered. She needs a tax ID number. I emailed asking for it. Stay tuned. There's a reason they call us "patients."

Team leader: My kind of girl

2007-12-11T19:48:00.000-06:00

Today Giudi Weiss drove me to meet with Dr. P, pulmonary oncologist (lung cancer specialist) . I liked her a lot and feel I am in good hands. She's smart, beautiful, compassionate, a leader in her field, direct but gentle, very human. She will lead my multidisciplinary care team. Tomorrow I get a brain MRI at 11, Thursday a PET scan at 5:15. My dear friend Barbara U, a retired logistical manager, will drive me to the MRI. I've asked her to organize volunteers for when treatment begins. I'll mostly need drivers, also possibly other help, depending on side effects. I am so blessed--I have a four-page list of volunteers already. For the next week the main goal is to get this cancer staged, that is, see if it has moved beyond the chest, and to understand what we're dealing with. Then the team will talk it over and put a treatment plan together, probably a combo of chemo/radiation, but they can't really say til the cancer is staged. I will most likely obtain a second opinion, possibly a third and fourth. At this point it looks like treatment will start right after the holidays. Stay tuned for details on possible side effects, etc. Meanwhile, my job is to bulk up. The good news is I'm going into this in good shape and in reasonably good spirits. People like me seem to do best, so that's a comfort. That's it for tonight--I'm pooped, having spent several hours at the hospital and on the phone getting pre-authorizations and pre-registrations sorted out. Will check in tomorrow after the MRI.

Background

2007-12-10T13:23:00.000-06:00

Friday, Nov. 30, a pain in my chest sent me to Northwestern Memorial Hospital's ER, where a CT chest scan showed a suspicious mass on my right lung. I met with a pulmonologist the following Wednesday, had a biopsy Thursday and on Friday (Dec. 7) received a diagnosis: non small cell lung cancer that has invaded some lymph nodes in the center chest and so cannot be removed surgically. The stage, IIIB, is their best guess to date. I am scheduled for a PET scan 12/17 to see if the cancer is confined to the chest or has spread. Some lung-function tests will also be performed that day. Tuesday, 12/11, at 11 a.m. I will see a lung cancer specialist who comes highly recommended and was one of the docs who wrote the clinical guidelines for treatment of this condition. Northwestern Memorial's tumor board will meet this Wed. a.m. (12/12) to discuss my case and come up with treatment options. Unless they have to wait til after the PET scan, I'm not really sure.

The pain apparently was caused by pneumonia and a partially collapsed lung. The ER gave me some antibiotics, and within 48 hours the pain was no longer an issue.

The universe provides. The night I landed in the ER I was supposed to meet with some classmates from Knox College, including cancer survivor and expert Leonard Bord, who was given a very bad prognosis 20 years ago and is still alive and incredibly helpful todaeny. He has been most generous with his expertise and compassion, and I am blessed to know him.

Last Thursday, the night before the path report came in, my zen meditation group was supposed to meet in my dining room, as we do every Thursday. None of the regulars came, but a brand-new member, who had attended only once before, turned out to be a certified nurse healer. She did a session with me last Thursday night, and another one just now.

I am also blessed, and deeply moved, by the outpouring of love and support that this diagnosis has generated. Thank you all so very, very much. I have prayed to be able to use this experience, whatever it brings, to open my heart and appreciate each moment, breath by breath. I know you hold me in your hearts, as I do you in mine.