Updates from Laurel & Angie (email sent 2/28/11)

Barbara has asked me to post onto her blog several emails I've sent to my own list of Barbara 'fans' over the past month. Here's #4 ... Laurel

I've had the joy to 'hang out' with Barbara (and Van) some this weekend. She embarked on two outings, the highpoint of which was an all-Bach organ concert by Jim Welch at the Santa Clara Mission yesterday. (Jim is an old family friend, even knew Barbara's dad, who was also an organist.) "It filled my soul, reminded me of who I am and what is needed here."

Barbara is increasingly uncomfortable and is experiencing some pain. She says that, if you want to visit, she'd enjoy your bringing some favorite prose or poetry to read to her, or your favorite classical music to listen to with her. She says "I LOVE being introduced to new music! I am learning to the end."

It's also fine to just visit, this was just an idea she wanted me to communicate. Barbara & Van could also use some LIGHT, SMALL meals (unless freezable in small portions, in which case larger quantities are OK). They have tremendously appreciated and enjoyed the many, many gifts of food over the past weeks.

One more thing: we have been 'on her case' about apologizing for being a nuisance. I have her explicit permission to 'blow her cover' on this--we can all unite in not letting her get away with apologizing, as we universally consider it a privilege and honor to be able to help her and Van in any way we can.

SCHEDULE-WISE: Please call after 9am and before 9pm; home phone number is best: 650-328-1932. Reminder that daughter Betsy will be visiting from Minnesota this Thursday noon through Sunday noon.

I also wanted to pass on Angie Chen's comments, which I do with her permission (from an email she sent Feb 21):

"Based on my experience, I wanted to cast a different light and expand on Barbara's condition: she is living wonderfully and fully in her process and has been remarkably active. Not many of my former cancer patients on hospice have had the opportunity to actually take advantage of the full spectrum of being on hospice. She is really preparing to die. Most folks just--die. Many Buddhist teachers mention that most of us never really prepare for death, but the only thing certain in life is death! As we are all dying from the moment of birth, just at different rates and trajectories.

Barbara is doing very well. She is living so deeply. Soaking it all in!

With the chemotherapy discontinued and demands of work reduced, as well as with the miracle drug called oxygen, her energy is very good given the aggressiveness of her disease.

The amount of morphine she is using is minimal and her mind is alert and clear.

She has mentioned that she welcomes calls and will let people know when she is tired... I wanted to emphasize the more engaged parts of Barbara at this time rather than the often associated cloistered parts of hospice."

In praise of hospice (email sent 2/15/11)

Barbara has asked me to post onto her blog several emails I've sent to my own list of Barbara 'fans' over the past month. Here's #3 ... Laurel

Barbara and Van have fully embraced hospice care; they have provided her with oxygen, and morphine, as needed. If you want to read something that will help you understand how she is feeling about her current adventure, she highly recommends these resources:

(1) "Letting Go", Atul Gawande, a wonderful article from The New Yorker 8-2-10 issue. Van & Barbara have this on their kitchen table and refer to it often. Among other things, it discusses in detail how hospice care enhances not only the quality but often the duration of one's life.

(2) "Dying Well," Dr. Ira Byock, both the book and the website: http://www.dyingwell.org/

Barbara says, to all those who are asking what you can do & how you can help, "The time is going to come... You're all in my life for a reason; you all have your own specialness." She is closing down her practice, though still having meetings with clients, including today!

Schedule-wise, daughter Betsey is coming for 2 visits in the next month, so that will not be the best time to call or visit:
Betsey and grandkids Joe and Jessie will be here Thurs-Sun Feb 17-20.
Betsey will visit again without the kids March 3-6.

Move to hospice (email sent 2/4/11)

Barbara has asked me to post onto her blog several emails I've sent to my own list of Barbara 'fans' over the past month. Here's the second one.... Laurel

Barbara has decided, together with Van and her terrific medical team at Kaiser, to change her treatment approach from chemotherapy to hospice. The chemo has lost efficacy, and stronger chemo would have increasingly bad side effects, without significant probability of success. Kaiser's hospice services will come in Saturday to help with setup; Sunday she and Van will hang out with family and watch the Super Bowl :)

She wants us to understand several key points:
• Hospice is a treatment, and it actually has the same goal as the chemo has had. That goal is to extend the quality of her life as much as possible, and especially to keep her as comfortable as possible. They are just changing the approach toward achieving that goal. As Barbara says, she's known for a long time that curing her cancer was not the goal.
• Hospice doesn't mean that she feels she has very limited time left, so she doesn't want everyone to panic. She just wants to change treatments. Barbara understands that tremendous strides have been made in the past 10 years in pain management, and she sees this as a positive change. "Exciting new adventure" is what she called it!

More delightful and comforting words from Barbara: "Reassurances have taken away all the tension. I have decided to surrender. This is going to be the most wonderful 6 months."

Will keep you posted.....
Laurel

Home from ER (email sent 2/2/11)

Barbara has asked me to post onto her blog several emails I've sent to my own list of Barbara 'fans' over the past month. Here's the first one.... Laurel

I had a lovely visit with Barbara this morning in her bedroom--she is in remarkably good spirits--to hear her describe her 12+ hours in the Kaiser emergency room yesterday, you'd almost think she'd had a day at the spa!! Her actual words: "It was just heavenly to lie there. The people were amazing--the nurses, the CAT scan people, the new people when they changed shifts. And that ER doctor (Dr. Lyn Aborn), oh my gosh..." She was eating well throughout, with the staff bringing her turkey sandwiches with bean salad, and Van bringing wonderful won ton soup from the little café downstairs later.

CAT scan results showed more aggressive tumor growth than hoped for at this stage, but not spread to the brain, which was a big concern. Barbara is making plans for where to place the hospital bed, and was going to be talking with her oncologist today, hoping to move her next appointment earlier than the Feb 14th date she currently has.

She came home late last night, as soon as the 2 units of transfusions were done being administered. She continues to say that everything is falling into place perfectly.Van has canceled Barbara's client appointments for the time being.

If you get this message forwarded to you and want to be added to my email list, please let me know. I'll keep you posted as I hear more news.

Serious Business

“Don’t worry, be happy"

--Bobby Ferrin

The process is intensifying. After the first sequence of chemo, we went to Palm Desert for our annual family holiday vacation. I had a few very manageable side effects, as well as a respite from the chemo process. We returned in time for my next infusion on Dec. 27^th. Experienced chemo survivors have told me that the intensity is cumulative, so I’m not surprised that I am feeling more limited after this week. Kathy said it’s a fatigue like nothing she’d ever experienced, and I’m just beginning to understand what she means. So far, it’s strictly physical, though. What I’m experiencing is in the body – the spirit remains entirely willing and open to all the new revelations. One after another, what were only concepts in my mind are manifesting as veritable realities that I experience in my body, spirit and soul. I am recognizing just how powerful is my need to control, all the while thinking that I was learning to let go. Well, I was, ever so slowly, but more able to talk about it than to enact it. Now, even though, much of the time, I still have a choice, I am discovering that it is much easier to let go, and let others take over. Most surprising to me is the new-found freedom and joy in the surrender. Whatever the fear was that underlies my need to be in charge, it is gone, replaced by the sweetest experience of relationships that I have ever had.

Our Palm Desert holiday was everything I have ever wanted from a family gathering. Not laboring under some requirement that I be at the center of the action released me to be a playful participant in the activities as they evolved without interference. Only once did I try to make something happen. It did not go well, convincing me not to try that again! Van and I had four delicious days with gorgeous weather, just the two of us. Peter and Denise, Holden and Courtney (son, grandson and their S.O.’s) joined us for a week, which overlapped for four days with Elizabeth, Joe and Jesse (daughter and her children), and son John. I had packed a few decorations and suggested that if anyone wanted a tree, I’d be up for it. The outcome was the loveliest of trees, provided by Peter and Denise, with help from Courtney and me. We did have rain - an opportunity for games and movies and working the 1000 piece jigsaw puzzle provided by Holden and Courtney. Every day, rain or shine, started for me with the hot tub jets soothing a painful spot on my back, followed by a therapeutic, body-stretching swim in the warm, warm pool. Three pleasant days later, Elizabeth, Joe, Jesse, Van and I headed home.

For the first time, an inner voice is beginning to question, “will this be the last time I will go to Palm Desert…trim a Christmas Tree…buy face powder…or moisturizer?” So far, any discomfort that I experience has not masked the aliveness, curiousity, appreciation that I so keenly feel. As never before, I understand what Mary Oliver means when she writes:

When Death Comes

When death comes

like the hungry bear in autumn

when death comes and takes all the bright coins from his purse

to buy me, and snaps his purse shut;

when death comes

like the measle-pox;

when death comes

like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering;

what is it going to be like, that cottage of darkness?

And therefore I look upon everything

as a brotherhood and a sisterhood,

and I look upon time as no more than an idea,

and I consider eternity as another possibility,

and I think of each life as a flower, as common

as a field daisy, and as singular,

and each name a comfortable music in the mouth

tending as all music does, toward silence,

and each body a lion of courage, and something

precious to the earth.

When it's over, I want to say: all my life

I was a bride married to amazement.

I was a bridegroom, taking the world into my arms.

When it's over, I don't want to wonder

if I have made of my life something particular, and real.

I don't want to find myself sighing and frightened

or full of argument.

I don't want to end up simply having visited this world.

A New Chapter

“Life is either a daring adventure or nothing at all” - Helen Keller

So far, my life continues to feel like an adventure, even with the mounting challenges. Tomorrow I begin a round of chemotherapy. I had hoped to avoid this treatment but am now finding myself curious about what it will mean, how I will experience it and what changes, inner and outer, it may necessitate. Already, as I learn more about my nutritional needs, I have made changes in my eating habits and am better informed about nutrition generally. For some time, I haven't felt much like eating, although when offered food that someone else has prepared, I'm hungry. For the moment it seems that eating is not the problem, cooking is. When Carol said she was preparing a turkey breast, could she bring one over to us, without hesitation I gratefully accepted the offer. That is new behavior – my midwestern upbringing, a control issue or just a habit has always required much protest whenever someone offered their help.

When one part of a system changes, the whole system is altered as a result. That is what has happened to the system that is me. As I continue to accept, without resistance, the abundant and generous offerings of food and assistance, my experience of myself is changing. While the creaks and twinges in my body may be associated with the process of aging and exercising less, I am noticing the adjustment my body is having to make as ancient tensions are releasing. I know from my study of psychology that our defenses must resolve slowly lest the exposed vulnerability be too tender to endure the experience of pain. It would not surprise me if, similarly, there is discomfort in the body as the long standing patterns of holding slowly let go. The pain is in balance, though, with an ease in relating to the outer and an absence of worry. The welcoming of these gifts of food, time, loving attention and support with thanks instead of protest, validate my belief in the mutuality of the process of giving – that people really mean it when they thank me in return for receiving their offerings with an open heart. I am not surprised since I know that my service to others benefits me perhaps more than it does those I serve.

I have never felt more connected to my fellow humans. I am now sitting in the chemotherapy suite, a long room with several reclining chairs stretched along the windowed wall. My chair is tucked in a corner, facing the windows, where I can see the tops of autumn-colored trees against the blue sky. Across from me is a very fit-looking young man, working on his laptop with his earphones in place, hooked to the machine which is infusing him with whatever drugs his disease requires. I will probably refrain from asking him what brings him here, although I am curious. There are many young people here, some my age, and some in between. I, too, have my laptop, earphones, and books, and, maybe most appealing, the opportunity for a nap! I'll be here a few hours, at least two, maybe four. I will come back in a week for a second infusion, then there will be a week off. This sequence will repeat four times, interrupted once for my annual trip to Palm Springs, with the blessings of my doctor.

I have been writing this post over a week's time now, having arrived at the Saturday before my second Monday infusion. I am propped in my bed, writing on my laptop in bed, another “first.” So far, my spirits are not impacted by the chemo, but I do feel less energetic physically. Laurel just brought lunch, gave Van instructions for preparing it, and came up to visit me, in my bed. At this point, working from my bed is a luxury, rather than a confinement; learning how to be active and rest at the same time – so many new experiences.

My cancer will not be cured, but the healing continues and deepens.

Another Round

Quoting from Mark Vonnegut (son of Kurt) in his new memoir,

"My father gave me the gifts of being able to pay attention to my inner narration no matter how tedious the damn thing could be at times and also the knowledge that creating something, be it music or a painting or a poem or a short story, was a way out of wherever you were and a way to find out what the hell happens next and not just have it be the same old thing."

When I read this, I knew why blogging has become so important to me. Caught up in the busyness and demands of my life, I have not been giving myself any creative time lately, and it's beginning to take its toll. I am becoming increasingly aware of Francoise (the harpsichord) sitting in silent rebuke and of the lament of my inner voices growing more insistent. It's been over a month since my last report, and, while my inner psychic responses are holding steady, the cancer is not. I'm well into another round of radiation, targeting a tumor in the subcutaneous layer of my right side just below the rib; and also a tumor on the pelvis which is beginning to invade the cortex of the bone. Except for being able to see the lump on my right side, I experience nothing from these presences. If I hadn't seen them on the scan, I might think it was all a hoax.

As with my previous radiation treatments, I have no side effects, except for an adjustment to a new routine. My body's natural alarm is 7AM but, to be ready every day for a 7:30 radiation treatment, a biological clock change was necessary. It has become a part of the adventure, to be awake and out in the darkness with the other early risers, something warm in the to-go cup and music playing that I have been wanting to hear. I've learned to go to bed earlier, and I'm hoping that after the treatments are over, I can maintain this schedule as a way to regain the lost creative time – an unexpected gift from the radiation.

Nevertheless, I have not felt a lack of creative spirit since life itself seems so creative to me now. At the end of September, I turned 79, beginning my 80th year. In fact, by Chinese reckoning I am 80, since in China you are one year old on the day of your birth. Van woke me up on my birthday with a youtube concert of “our songs,” songs from the days of our courtship and early marriage, evoking the sweetness and depth of 60 years of memories. Steve and Laurel created a CD of the concert for us, inspiring us to try dancing again!

I am surprised and delighted these days by the joy I am experiencing with my friends and family. The big events - the births, marriages, deaths - and the simple shared moments –a hug, a conversation, a concert, a meal. To the hundred years of blessings that our home holds in the being of its structure, was added this month the joyful family shower for beloved cousins, Natalie and Eric, expecting their first baby in early November; and the exquisitely touching wedding for Angie, Tenzin, and baby Loden, particularly meaningful because I had been deputized to perform the lovely ceremony created by them.

Also this month, The Stanford community, our neighborhood, and friends and family came together to remember Nelee Langmuir, our friend and neighbor who died in August. Nelee held a salon, attended by the coming and going of many, many friends, during the days she was dying. Conversation, food, and wine flowed, as Nelee flowed in and out of alertness. Her services were held this month in Stanford Memorial Church, another structure of more than a hundred years, holding a rich store of blessed memories for me and thousands of others. How fortunate I am to have this model as a guide for my future!

No less meaningful for me are Robert's hug on a Sunday morning; Laurel's sharing of her time, talent, and hospitality; Frank's friendship and shared appreciation of Philharmonia; Jim's treating me to personal organ concerts; Faith's constant and comforting presence in my life - only a glimpse into the riches nourishing me from the people in my life. I am very grateful.