Friday, September 7th
We’re done! Yesterday afternoon Tristan had his final chemo at UCSF. With the five us all there, as well as my whole family, and our lovely hospital social worker (there for us on her day off), and many of our doctors and nurses, and our favorite medical assistant, Tristan happily and confidently rang the bell that signifies the end of treatment.
In the days leading up this event, in long, run-on sentences, Tristan excitedly told lots of people – the clerk at the Discovery Museum, a shoe saleswoman, and others – that he would soon ring the bell at UCSF because he had leukemia and he’d been in treatment for a long time but he’d soon have his last chemo and then he’d be done with treatment. When Gary and I asked him, so what makes you excited and happy about being done and ringing the bell?, Tristan replied, “I don’t really know! I’m just excited!” I really think it sort of felt like graduating from pre-school: pre-school wasn’t horrible, it was actually pretty fun, but it’s exciting to move on. He doesn’t really know anything else anyway – he doesn’t remember a time when he didn’t have leukemia and wasn’t making trips to UCSF with me. To him, it felt like a graduation, not like the end of a prison sentence filled with torture and suffering.
I wish I could say the whole trip south went off with out a hitch. Of course it didn’t. On Tuesday, the day before we drove down to the city, a massively-long wide load trailer heading up the tight curves of Kneeland Road (almost a geometric impossibility) screechingly grazed the metal treads of the humungous digger it was carrying along the left side of my car while I headed downhill. In a turnout, the trucker and I resolved the unfortunate incident most civilly (he’ll straight-up pay) while his lead truck guys duck-taped various frayed, loose pieces of my car back together again. With a chunk missing from its left front end, my car made it to soccer practice and home again, but Gary and I decided it might be pushing our luck to drive it down to SF. The kids are, of course, thrilled with the minivan we rented for the trip.
Tomas suggested before the trip that in San Francisco we try to do our favorite things, things that have become traditions over the last three and a half years. Although Chris is now back from Budapest and his place was available, staying a night at Family House seemed important. I wanted to share with some of our favorite Family House staff that this was Tristan’s last treatment at the clinic and have a celebratory night there. We arrived in the evening, settled in, and headed over to the food court for dinner and a pitcher of sangria. The kids love that place, and, after they finished eating their fries and nuggets, Tristan and Phoebe made themselves comfortable in a group of complete strangers sitting around one of the fire pits. They chatted with two gorgeous young Asian women, almost sat in the lap of a medical student who was trying in vain to study a textbook, and handed out marshmallow sticks to the crowd. Gary, Tomas, and I watched them for a long time while we ate our Vietnamese barbequed pork, laughing and wondering when their charm would wear thin. Eventually I intervened when Tristan began to climb on top of the metal cage closing in the fire pit. Seemed like a good time to step in. Back at Family House, Tomas, Gary, and I finished a Mission Impossible movie we had started a day before, while Phoebe and Tristan watched some kids’ garbage on Netflix. Good fun for everyone.
On Thursday morning we hit the Aquarium of the Bay, one of our favorite San Francisco destinations. Tristan petted sharks, Phoebe fell in love with a chinchilla (no idea why there was a chinchilla in an Aquarium), Gary loved the jellyfish, and Tomas liked the otters. My favorites are the baby stingrays, who sometimes poke their puppy-like heads out of the water for a good look at you.
From the Aquarium, it was straight to the children’s hospital for a pre-chemo lunch. During lunch and on our way to the clinic, I ran into: a nurse I know from the OR, a single mom who likes to tell me about her teenage daughters; Angel, the receptionist for the OR who is unbelievably kind and always tells me what a wonderful mother I am (she hasn’t heard me yell at the kids); and Kristina, the mom of Ivan, a young man who’s long been engaged in a battle with leukemia. Years ago, at Family House, Kristina fed me wonderful enchiladas topped with a fabulous smoky salsa that her husband had made. It was touching to feel like I was running into friends right and left in the hospital.
Upstairs in the clinic, there was a buzz in the air. The receptionist, who’s usually grumpy as hell, said cheerfully, “I understand it’s a special day today!” Our appointment was with Dr Sabnis, our primary doctor at UCSF and my absolute favorite. Sporting a hip bow tie, he gave me a big hug and congratulations, and he told me he remembered clearly the night Tristan and I arrived. I do, too. He signed off on Tristan’s chemo, and we went through the usual routine: the chemo nurse assigned to Tristan had trouble getting draw from a vein in Tristan’s hand, so she went to find Stella, the Russian nurse who never fails to get flow right away. Stella didn’t fail us this time either, and Tristan played on an iPad throughout the whole thing. And then we were done, and it was time to call in the rest of the family, and to page Dr Sabnis and Evans the medial assistant and Jenee the social worker, for the bell ringing.
At the other end of the hallway, near the bell, doctors and nurses and other staff assembled, holding up a big sign of congratulations that they had made for Tristan. In his “No regrets” t-shirt, he marched straight down the hallway with us in tow, and without ado, he grabbed the rope hanging from the bell and gave it a good yank. The crowd gave him a huge cheer, and there were hugs and thanks and good wishes all around.
We reassembled with my family at Chris’ near Ocean Beach, played a little soccer on the turf fields near his place, and made our way to our ultimate destination: the Chinese restaurant where Tristan could partake in roast duck. Chris did a fabulous job ordering pea greens and green beans and beef noodles and hot and sour soup and wonton soup and a lot of other stuff, and we all ate until we could eat no more. Back at Chris’ we toasted with moonshine palinka Chris had just smuggled back from Hungary, and then we all fell into bed.
Today we went with Nikki and Oma to the Cal Academy (another site on our Favorites list), then lunched at the Beach Chalet (Favorites, as well). Tonight Uncle Chris is making gulyas, which Tristan loves.
How do I feel? I don’t know yet. Silence on the radar. I’m not sad. I’m not elated. I guess I’m wondering what comes next.
I do know that my life is much richer than it was three and a half years ago. I have met truckloads of incredible people, some warriors, some guardian angels. Susan (Noah’s mom); radiant Bianca (of the double lung transplant); Della (who forty years ago had two children develop leukemia in sequence); Coco (who patiently and skillfully henna-ed the whole smooth canvas of her daughter’s bald skull) – all warriors. Anna (Family House staff who, as a child, lived in the old FH for years while her older brother fought acute myeloid leukemia); Ilana (our outpatient nurse, who answers emails 24/7); Jenee (our social worker, who promised me at the beginning that she’d be there to see Tristan ring the bell, and who started a different job today) – our guardian angels. Actually, lots of the angels got there via being warriors; Jenee lost a leg to bone cancer in her teens, and then had ovarian cancer in her thirties, and Anna earned warrior status when she was the bone marrow donor for her brother. Maybe, if I’ve learned something from these folks, whatever comes next involves a bit of warrior and a bit of guardian. Still working on it…