Christmas chemo

Limbo, Monday, October 12th

This morning, before she went to school, Phoebe changed Tristan’s diaper and got him dressed. It’s not the first time. A few weeks ago, when I came back inside after feeding and mucking the horses, Phoebe called out to me, “Mom, Mom! Tristan did a poo and I changed his diaper!” My joy that my five year-old daughter was helping out was, regrettably, overshadowed by fear that she was exposed to Tristan’s chemo poo. “Oh, wow…but did you…?” I began to respond. Phoebe cut me off. “Don’t worry Mom, I put gloves on.” Of course she did. Why should I be surprised that my tiny daughter not only took the initiative to change her brother’s poopy diaper, but also thought carefully to put on latex exam gloves because she understands that her brother’s poo and pee have dangerous medicine in them? Yesterday, when I asked her for a hug because I was sad about an argument I had with Tomas, she skipped over to a couch, patted the seat next to her, said, “Come on over here, Mom,” and then have me a big hug. In addition, she’s been giving Tristan his weekend antibiotics, a prophylactic against a respiratory infection dangerous to kids on chemo. What a great kid, and emerging as a caregiver. (Yep, I’m leaving out the other stuff, like her two massive tantrums yesterday, the first about the boys being mean to her, the second about lunch. We have all that, too.)

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Tristan and I are in limbo. Friday morning we had his labs run at St. Joe’s in Eureka and found that he was neutropenic, meaning his neutrophils were very low, meaning his immune system had become dangerously compromised, probably because on top of the chemo, he has had the mysterious not-chicken-pox virus. Guess that explains why he’s been so tired and fussy. As such, our trip south today for his chemo at UCSF tomorrow is up in the air. We had to have his labs drawn again this morning, and are waiting for the results, suitcases packed and in the car.

Because of Tristan’s neutropenia, during the past week home we didn’t invite anyone to visit and I abandoned trips to the grocery store with him. We watched carefully for fever, which would have won us another hospital stay, no thank you. Despite being unwell, Tristan still managed to have lots of fun. At one point, I sent our outpatient nurse a photo of Tristan standing atop a huge stump, firing a bow and arrow. The picture was meant to convey how well Tristan was doing and what beautiful, healthy surroundings he’s in. Instead the nurse responded with horror, “Is that a bow and arrow? Be careful!” So, rather than communicating to her what a lucky kid Tristan is to be in such a healthy setting, I managed to give her the impression that Tristan is allowed to climb to dangerous heights and play with lethal weapons, unattended and unsupervised. Good job, Mom.

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It’s absolutely gorgeous fall in Kneeland, warm and breezy and sunny. This past week I’ve been running from our house up the the kids’ school, which gives me a chance to see our place from above, which I love. We also made a trip to our favorite swimming hole on the Mad River with my friend Tanya. It was too cool for a dip, but Tristan got into the age old sport of skipping stones. And, finally, there was the requisite fire station visit, during which Tristan got to admire Humboldt County’s longest fire truck.

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…And the nurse just called with Tristan’s numbers. Oh, to be three and superhero strong and able to snap back like a rubber band! His ANC is now 1400, which means he’s got plenty of neutrophils, which means his immune system is up and running again. His platelets are at 481,000 and his hemoglobin is at 12, high enough for playing with lethal weapons on a tall tree stump. We’re hopping in the car and we’re off to SF for tomorrow’s appointment in the clinic…

Delayed gratification & lumbar acupuncture therapy, Wednesday, October 14th

I’m reeling, having just learned from our outpatient nurse that Tristan’s treatment schedule for the next phase of chemo, forebodingly called Delayed Intensification, will involve a full month or more in San Francisco from mid-December to mid-January, with extra bonuses of chemo on Christmas Eve and New Years Eve. I knew it was going to be bad, but I’m sad to see just how bad. But, chemo doesn’t stop for the holidays, and I get it. I mean, this is war…Though I seem to remember from those Erich Maria Remarque books that WWI soldiers in the trenches did declare a short ceasefire for Christmas…Maybe that’s outdated. No ceasefires this year. Christmas chemo. Champagne and caviar and chemo. Ok, so I’m pissed, too. So, now I work through the sadness and the anger and start planning for Christmas in the city.

Tristan and I made it back today in record time from his chemo appointment at UCSF yesterday. He slept from Santa Rosa to the base of our mountain — four hours. He’s feelin’ good!

We had a good, short trip down south, staying overnight in Ukiah Monday night with our good friends Peter and Laurel. Tristan collected hundreds of acorns with Laurel and sorted them into different ziplock bags based on size and color. He clearly has a future in some kind of botanical taxonomy and classification…or he’s just kind of obsessive like his mama..who happens also to like taxonomy and classification.

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Tuesday morning we drove the rest of the way to the city, and went straight to the hospital for his appointment. The appointment was relatively smooth, made more so by a gigantic box of muffins and chocolates given to Tristan by Evan the Nurse. After the chemo, we drove to Family House, unloaded the car, did the parking dance, and went out to dinner at a small Korean restaurant with my friend Kinari. Tristan drank orange Fanta with dinner — chemo compensation. I have no problem with that. I had a large Korean beer. I deserved it.

We’re home for a week, and in the hospital again next Thursday for IV chemo and for an OR procedure — chemo via lumbar puncture. Couldn’t they come up with a gentler word for that? I mean, really, “puncture”?? Someone needs to help people in the medical profession with terminology. I volunteer. For reasonable hourly consulting wages, I will provide friendlier, more agreeable, less terrifying alternatives for “puncture” and “delayed intensification”. Lumbar spa acupuncture therapy? Delayed gratification? Don’t those sound better?

I’m hoping to see lots of friends during this week home and to do lots of runs. Friends, call me. I promise to be light and comical. Maybe.

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