Breathing Easier

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

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

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

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

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

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

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.