Wednesday, November 11th
Last night over dinner Gary and I shared a very hot pepper, picked from our garden just before the first frost two nights ago. That led to reminiscing about what we agree might have been for us the greatest of life’s small pleasures. Yep, we’re pretty sure was ubi goreng (fried cassava) dipped in simple sambal made from mashed up chilis, MSG, salt, and maybe a little sugar, accompanied by scalding hot coffee, Indonesian style with the grounds at the bottom of the cup. Ok, and sometimes that was followed by a clove cigarette, bummed off of one of our field assistants, but I swear that was just a short phase.
Context is important. Although I’m sure I’d enjoy this tasty snack right now, it was particularly buoying given our circumstances at the time, which rank undeniably as the most miserable ones I’ve lived in. Gary and I were grad students, and were on Karimata Island, famed for being a cauldron of dengue and malaria, about 14 hours by slow boat from the coast of southwestern Borneo. The rainy season had just set in so we were permanently soggy and beginning to mold from head to toe. The crew of villagers we had hired to help carry our equipment up to our high elevation field site had been deliberately misled, by the villager who recruited them on our behalf, into thinking they were being hired for the long-term. In anger, they held an all-night rager and ate all of our supplies before departing. So, we were on a diet of rice and Indomie (Indonesia’s version of Ramen). To top it off, we were living in a cave. A dark, damp cave. It had seemed like a good idea at the time, rather than setting up a big tarp to live under, as at our last site. That sentiment was short-lived, and the cave ambiance quickly turned from new and interesting to dreary and depressing.
So, there you have it: we were wet, living in a cave, and eating only rice and ramen. Then one of our field assistants went on a cigarette run, which pretty much involved a full day of hiking down the mountain to and from the nearest village, which didn’t have much more to offer than cigarettes, rice, and ramen…and, thankfully, chilis and cassava root. Andi showed back up with the extra supplies, and one wet rainy afternoon, we all sat in our cave dipping fried ubi into hot sambal, sipping sweet coffee, telling silly jokes, and pretty much 100% enjoying the moment.
Last weekend, I had my 44th birthday, and was fortunate to be home. On that day, too, I got to enjoy one of life’s small pleasures. It was Tomas’ gift to me, an amazing birthday present. After breakfast, he took his brother and sister upstairs to play so that Gary and I could peacefully drink our coffee together. (That never happens. Peaceful coffee drinking.) Tomas played with his younger siblings in their rooms for almost two hours. When they finally came down, Tristan dressed as a pirate and Phoebe as a doctor, Tomas said, “Did I do good, Mom?” It was so sweet, a real kindness. And the quiet time with Gary ranked as high as the fried cassava-spicy sambal-cave combo.
Our most recent trip to San Francisco, on which Phoebe accompanied Tristan and me, was last Sunday through Wednesday. It was a fabulous trip, and so great to have Phoebe along. We drove south Sunday morning and visited our new friends — a family with a three and a half year-old son who has leukemia — at their home in Mill Valley on Sunday afternoon. It was a great visit! Tristan and Noah disappeared into the Noah’s room and played happily for hours, Tristan dressed at Batman and Noah dressed as Spiderman. Phoebe played with Noah’s big sister Maizie. I talked with Noah’s mom and dad, and with the steady flow of the Mom’s sisters and in-laws and nephews and neighborhood kids who dropped in for a Sunday afternoon visit. It was such a pleasure, and I am SO happy to have met another family with whom I can connect over this new life, this life with leukemia and chemo and neutrophils.
We spent Sunday night at Family House. Phoebe was in heaven when she discovered the huge collection of Halloween costumes that had been donated in the previous days. She sighed a big happy sigh and said, “Mom, I LOVE Family House.” She got to keep a beautiful bride costume, and Tristan happily accumulated another fireman outfit. We delivered the clothing, blankets, and books I had brought for the family from Arkansas. I was sad to see they didn’t look so enthusiastic and hopeful as they had on my previous visit. Their premature son in the hospital is doing well, but UCSF plans to transfer him back to the children’s hospital from which he came…back in Arkansas. Back to the same old, same old. They seemed to be trying to make the best of it though, saying it would be better to be near family back there.
Monday morning we had a surprise invitation to move over to my brother Chris’ place, as Chris and Agi didn’t have any tenants in their other units and Phoebe’s foundation-shaking foot stomps wouldn’t drive anyone (other than us) to madness. We met Agi for a beautiful walk in the Golden Gate Park botanical gardens and then lunch in the sunshine at a restaurant with sidewalk tables, after which we moved our things to the empty apartment below Chris and Agi’s. My father arrived that evening, as part of our plan to return Chris’ Prius and drive back home with him. We ended up have a fun, loud, fabulous dinner with all of us there.
Tuesday we had a slow morning and, about noon, the kids and I drove to the clinic at UCSF. Phoebe was a fantastic companion, and Tristan was ecstatic to have her there with him. I took them for lunch in the hospital cafeteria, which is quite good, and they were GREAT. Phoebe spent a long time pushing in all the chairs at the table when we were done, making sure they were neat. Then up to the clinic, where Phoebe played with Tristan in the waiting room, met the doctors and nurses and social worker we see on each visit, and watched unflinchingly as Tristan had his port accessed and was given his chemo. It was great to have her there, and the clinic staff appeared to be bending over backwards to make things smooth for us after my tantrum last week. Phoebe is going to present a photo journal of her visit to her class at school later this week.
That night we had another big loud dinner at Chris’, this time joined by my friend Kinari. Kinari, who is a doctor, made my father extremely happy by engaging him in a long conversation about state of American medical practice, in all its over-prescribing and over-radiating, a topic on which he has blogged and raged, raged and blogged. They saw eye-to-eye on the whole thing. It was fun to watch the exchange.
Wednesday the kids and I drove home together with Nagypapa. The trip was smooth. And now we’ve been home a whole week, and won’t leave again until this Monday. It’s been a good, long time at home. I’ve been running alone and with friends and with Otis the dog on top of our mountain, with Tristan in town. I took Tristan, in a mask, to our school’s Fall Carnival with the rest of the family. At the carnival, Noni showed her usual golden touch by winning every prize she dropped a ticket on, and Tomas won by auction admission to a winter soccer skills academy.
The days at home also included a birthday celebration with Oma and Nagypapa, complete with firetruck birthday cake (maybe this has gone overboard); Nagypapa explaining the New Yorker cartoons to Tristan (he has a sophisticated sense of humor for a three year-old); and the kids’ final soccer game of the season (Tomas had multiple goals and a few terrific kicks right to the mouth of the goal).
Tristan has been happy to be home and seems pretty strong. His appetite is up and down. We’ll do his labs again on Friday.