Report for March 30th

Report for March 30th (or 79.5 + 4, according to Betsy Gifford's dating suggestion): holding steady here.

Update from Van for Sun Mar 27

It's Sunday morning, March 27 as I write this. "Renaissance" is not precisely the right word, but for the last few days, it feels something like that. There have been longer and longer periods of lucidity, engagement, and expressions of that loving, positive spirit Barbara so embodies. Very little pain or other discomfort. Even some slight return of appetite and the sweet feel of flavor on her tongue. She's slept well the last two nights and naps during the day, but often, when apparently asleep, she's hearing almost everything we say, opening her eyes and murmuring, "No, you're not remembering that right."

The formidable Laurel (webmaster for this blog, and much else beside) calculated that yesterday, March 26, was exactly Barbara's 79.5 birthday, a factoid none of the rest of us would have ever thought to calculate. A lovely, lively birthday party ensued--eight of us and Barbara beaming at the center. The pictures don't say it all but they say a lot. In additional serendipity, one of our dearest, oldest friends, Paul Ivory, called from Australia, and the edges of long separation were drawn once again closer together. Her harpsichord teacher, Kathy Perl, will play for her later today.

Update from Van for Wednesday 3/23

It's mid-morning of March 23, and I haven't posted for a couple of days. Barbara remains in the holding pattern of recent days--comfortable and composed most of the time, drowsy or sleeping a good deal, lucid and present when she's awake. Each day has also had its moments of low vitality when she and we thought the end might be imminent, but then she sleeps, opens her eyes, smiles, and talks to us.

Update from Van for Saturday 3/19/11

Today's landscape was very similar to that the of the last few: concerns early in the day about why she can't seem finally to let go; then dear friends, members of the extended family; music, laughter, and of course tears. For much of the day, Barbara was amazingly responsive and on point. Now, late Saturday evening, she's resting quietly.

PLEASE NOTE: Unless there are significant changes, I may not blog every day. If a day, or even two, is missing, know that we are all still here, much as before. When there are important changes, I will let you know (thanks to Laurel) by blog and email.

Update from Van for Friday 3/18/11

The vigil continues. The day began with another walk to the edge and then back again. The rest of the day was one of serenity and pain-free alertness, interspersed with pleasant naps, music, reading aloud. She smiled a lot, softly and gently. She's beautiful.

Update from Van 3/17/11

We're all still here. Her sister Portia brought helium balloons in various shades of green, in honor of St. Patrick. Likewise, Joanie left a shamrock with tiny flowers. Having got rid of the snakes, the good Saint should have gone after cancer. Once again, Barbara seemed to herself and to us very close to the end. She spoke several times of wanting to let go, even asking--once only--if she could be given something to overcome consciousness. And once again, she seems to have retreated from that edge. How far and for how long, no one can say. On the basis of vital signs and lucidity, Angie guesses that a day or two--or even longer--is possible. So is death at any time; meanwhile she waits calmly and without pain in its anteroom. Eros is resisting thanatos and, though thanatos will ultimately prevail, eros is no pushover.

Update from Van 3/17/11

Yesterday (March 16) was a fairly calm, mellow day. Having John and Betsey here is deeply comforting to Barbara and deeply helpful to me--in so many ways on so many levels. There were more visitors, but appropriately fewer than the day before. Her sister Portia was here all day and into the evening. At one point, Barbara said softly to me, "I should be leaving, but I can't let go--I just can't." And then, the line of the day: Portia was sitting at her bedside, working a crossword puzzle. I came in and asked how things were going. Portia said, "Well, she got three words that had me stumped." They were (1) the French word for soul (âme), (2) Beethoven's only opera (Fidelio), and (3) a 19th century violin virtuoso (Paganini). "Wow", I said, thoroughly impressed, "that's terrific!" Barbara smiled that small smile of hers and,ˆ with just a little slurring, said, "Van didn't marry no dummy." Laughter ensued.

Update from Van 3/16/11

Barbara approached the edge yesterday (Tuesday), then drew back. She awoke with the sense that very little time was left to her, and with joy that most of the family was here, but she was deeply concerned that Betsey might not arrive in time. Hospice helped us see to her general physical comfort, and Betsey was able to book an earlier flight, which Barbara Toothman generously met, but still she did not arrive until late evening. Meanwhile, many family and friends came by for varying lengths of time, to say hello and, perhaps, goodbye. Music was played, food was consumed. Tears and laughter. Pictures were taken. March 15 was also our son John's birthday, so his wife Susan brought a cake with candles. More pictures were taken. If a moment can be filled with a sense of profound impending loss and, at the same time, a feeling of celebration and love, then this was that moment. Betsey arrived, and Barbara's heart was eased.

After everyone left, she slept comfortably, if episodically, and this morning, she seems almost as though the brinkmanship of yesterday never happened. She's relaxed and awake, sometimes completely lucid, sometimes kind of dreamy and drifty, not in pain we can't control. More music and laughter. Some who could not come yesterday will come today. Kathy Perl, her harpsichord teacher plans to play for her today, a special one-on-one house concert. It is not without prescience that Barbara's blog is called "what wants to happen." Stay tuned, in tune.

Joyful visit from baby Loden

I think perhaps the highpoint of Barbara's day so far was a visit by Loden (of course she was also happy to see his parents, Tenzin & Angie). Barbara sat up, lit up, and was clearly delighted! "Such an adorable baby, baby, baby....." She held Loden's hand, and was very happy.

Laurel

Family Together

Barbara is weaker today (but pain management better). Family will be there all day to help, in overlapping rotations--Van, sons John and Peter, daughters-in-law Susan & Denise, and Elizabeth (arriving tonight from MN).

Laurel

Rough day Sunday

Barbara had a rough day yesterday, and a rough night. Van is asking hospice to help with better pain management; they will be there at 2pm today. Son Peter and Denise got back from Hawaii late last night after a long day of travel. Today will not be a good day to call or visit. We hope meds are adjusted and things are more stable tomorrow.

Laurel

Your love is carrying me

Here is the view from Barbara's bed; beloved family friend Jeff is visiting this weekend from Seattle. The bouquets of spring flowers are gorgeous; we sorted out her bedside table so she could enjoy them even more.

4 days since our last post…. I told Barbara that some of you had been asking for more frequent updates and are checking her blog every day for posts. In her own words… “How can I tell you how much you all mean to me? I love you all so much! Your love is present in this room, carrying me, one day at a time, sometimes one minute at a time.”

After it seemed we’d been talking for perhaps too long, I asked if we might be overdoing it—she said “We’re going to overdo it all the way!” Barbara says she is a little “loopy [from the meds] and extremely happy.”

Visits, meals & gratitude

Barbara’s hospital bed arrived Thursday and, after some technical support to work out mechanical problems, is now fully functional, positioned right in front of the big living room picture window. Barbara calls the bed her new ‘toy’, and says she is having fun playing with it. It is helping her stay more comfortable as she enjoys the view of their beautiful almost-spring garden. This weekend, as she moved from the bed to her chair and looked around the living room, she commented, “I’m having the best time, soaking it all in—all the things we’ve collected over the years.” The biggest challenge right now is finding the right balance between managing pain, nausea, appetite, and digestion, and that’s what hospice has such expertise in.

Thanks to loving help from Helen & Alissa, Barbara has closed her practice, though she was still having phone sessions with clients through Thursday.

Many of you who live locally have been asking about bringing meals, visiting etc. With input from Barbara, Van, and Betsey (who just left Sunday to return home to Minnesota after a wonderful 3-day visit), we’ve come up with some guidelines. Most importantly, please call Van to schedule, preferably same day or day before, as he needs to coordinate with visits from numerous hospice services, most of which are also finalized same day. Van's phone numbers:
home 650-328-1932
cell 650-248-8002

VISITS - Visits of about a half hour are welcome, probably no more than two or three in any one day, spaced to give Barbara time to rest. Please call before you come, either on the home phone (650 328-1932) or on Van's cell (650 248-8002)--though Van acknowledges that he's not always on top of cell phone technology. On days when she’s not feeling well, they may ask you to come at another time. Along with conversation, she would enjoy being read to. She’s keeping a book or two, including some poetry, by her bedside, so you don’t need to bring a reading, unless there is something special you’d like to share. As always, Barbara is finding the teachable moment, and recommends Final Gifts, which is one of the books by her bed.

MEALS – Please also call if you want to bring some food. It’s OK to knock on the door and say hi when you come by, or to just leave a package on the front porch. Please use containers that can be recycled or composted and don’t need to be returned. Light, nourishing , easily swallowed foods are best, in small-to-medium amounts. Soups with broth are very good. Although Barbara often enjoys what she eats, she doesn't have much appetite these days. Freezables can be a bit larger if you wish.

Barbara and Van deeply appreciate your loving concern and support—past, present, and prospective. They thank you from the bottom of their hearts.

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.