Pretzel mom

Sunday, December 13th

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“Mom! Mom! I washed my hair!” Tristan told me proudly the other night as Oma was getting him out of the bathtub. “Good job, Sweetpea!” I responded with exaggerated enthusiasm. I looked at Tristan’s bald head, wondering what he thinks he washed. I guess last week’s buzz cut was a good call. He seems to have made the transition from hirsute to cue ball pretty smoothly. Or simply without an awareness.

Tristan and I went to St Joe’s Friday to have his labs done. The results were to decide if we headed to the city today or not to begin another round of chemo tomorrow…but instead they ended up extending the limbo. Tristan’s ANC (neutrophil count), came back at 600, much higher than expected but lot quite the 750 needed for the go-ahead. The concern at 600 was that this might represent a number temporarily and falsely elevated by the course of steroids that Tristan just finished a few days ago, but that is still in his bloodstream. So, we needed to do his blood counts again this morning. Suitcases packed and in the car, we waited in Eureka til just after noon for the results.

This was a good exercise in adjusting expectations. Flexibility required.

And…we’ll be home for another five days. Tristan’s neutrophil count fell again as the steroids cleared from his system. The big, bad side of this is that it means the intensive phase of treatment we’re in will be over later, rather than sooner. But there are many more points on the good side: I can do some Christmas shopping this week; I can help Tomas get his costume together for the school play; I don’t have to speed back from the city on Thursday afternoon to make it to the play; I can enjoy with the kids the big snow we are having; Tristan’s chemo will not fall on Christmas and will be finished (for this intensive phase) by New Years; and on Christmas he’ll probably still be feeling pretty good. (His counts are expected to fall dramatically just after the last day of chemo in this phase.) You can see, I’m working on adjusting my expectations. If flexibility in expectations has a physical manifestation, I’ll be a yoga guru by the end of this, able to twist my body into the shape of a pretzel. Let’s hope so.

Tristan is a chunky monkey again after his second week of steroids, plus another week of still riding their appetite-increasing effects. This time around, he developed an obsessive taste for linguine, chicken broth, and chevre spread on orange cheddar rice crackers. Breakfast. Lunch. Dinner. Had to be to the same each time, and each item had to be served in a different dish — nothing touching.

Tomas has been sleeping on a fold-out mattress in Tristan’s and Phoebe’s room since Tristan’s hair fell out a week ago. I think seeing his little brother go bald kind of hit him. Maybe it was the first tangible indication to him that this thing with Tristan is real. I’m glad he wants to sleep next to his siblings. I feel like he’s watching out for his brother. He hasn’t actually verbalized any of this, but that what I think is going on.

We set up a Christmas tree yesterday, a small one, as we expect to be in the city for Christmas. Too small for the number of ornaments we have. By the time we were done, we had only used a fraction of the decorations we have, and the tree looked as though it had caught in its branches a ton of flotsam that had streamed by it. It is the messiest Christmas tree I have ever seen. I love it.

The snow is so beautiful. The weather built up for days and days, with incredible winds that shook our house and brought down a big pepperwood tree, and lashing rain that came in under the doors. Finally, early this morning, the rain turned into gigantic snowflakes that accumulated quickly into a few inches of snow. Tomas lost no time in pulling out the sleds and strapping on a pair of skis. Phoebe was a pink wonder from head to toe in the snow while Tomas stood below her on the slope to make sure she didn’t zoom away into the woods. Tristan rapidly decided he hated the cold and wasn’t interested in playing in the snow. Maybe if the snow keeps up over the next few days he’ll change his mind — a benefit of staying here this week.

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