Yookini, anyone? Saturday, September 5th

As humans, we must be unique among animals in the overwhelming emotional complexity we experience. Our emotional survival depends on adjusting our expectations as new surprises unfold from day to day or year to year. Those who fail to do that end up crippled in some way or another.

Many of my women friends, other moms, have written to me or told me, in response to my communications about Tristan’s journey of the past six weeks, that they’re in awe of my strength, or of how well our family is holding things together. Of course, under similar circumstances, they would do exactly the same. They would adjust their expectations and they would not be crippled by the experience. They would negotiate happiness.

It’s stunning how one does it — negotiate happiness with oneself — so automatically, almost dumbly. A few weeks ago I was looking forward to a long-delayed vacation to Baja that Gary and I were planning, had already bought tickets for. Now, I’m looking forward to having Tristan being done with lumbar punctures next week for six weeks. Yay! Only one more lumbar puncture this month! I’m not being sarcastic. Really, that’s something that makes me happy. Even a toddler can make similar adjustments. Yesterday Tristan asked me how many days we’d spend back at Family House when we go back this coming week. Two or three, I said. He responded, “One would be good, Mommy. I want it to be one.” I told him it had to be at least two. He smiled, satisfied.. “Otay Mommy. Two is otay.” He was happy that it was two days, not three. Negotiating happiness.

But sometimes you do hit a bump, and it’s harder to re-gauge your happiness and set new targets and expectations. You just feel sad for a while. Thursday I felt sad all day. I don’t know exactly what set it off, but it sort of settled heavily on me when I dropped Tomas and Phoebe at school, my first time up to the school this school year. I was looking forward to meeting Tomas’ new teacher, saying hi to Phoebe’s teacher, and seeing friends who would be there dropping off their kids. When we arrived and Phoebe and I went inside to hang her backpack in her cubby, all of the bigger girls came to give me hugs. They were so sweet, and so grown up. Not one of them said anything about Tristan or asked about anything. They weren’t giggly or silly. They just came up, one by one, to hug me. So sweet. Suddenly I was fighting back tears. Same thing meeting Tomas’ wonderful new teacher — fighting back tears again. And again chatting with Phoebe’s teacher. I think I just realized how much I miss being here at home, and how much I love our mountaintop community, and how much it hurts to not really be here and part of the kids’ schooling and social life. And it’s brisk and Fall has come early and that’s just kind of a bummer.

And then, Thursday evening, I was okay again. I found new things to look forward to. I made risotto and roast chicken breast for dinner. I fed the three kids before Gary got home. Tomas, as always, ate well. He always makes me feel good about my cooking. Tristan tucked into the chicken. Phoebe had before her a bowl of white rice. Phoebe would happily subsist on white rice, and is sustained and nourished by the healthy peanutbutter we coaxingly feed her by the spoonful and the almond flour Gary surreptitiously mixes into her hot cereal. But, at Thursday’s dinner, Phoebe said suddenly, “Mommy, can I have some chicken? I remember, I like chicken.” OMG. I almost fell over. She ended up eating two big helpings. It’s been years. So, now I’m looking forward to…maybe?…dare I say it?…Phoebe coming out of her starvation protest (against what, not sure). I’m looking forward to finding things she’ll eat and teaching her to love food again like she did when she was a baby. Boy she was a good eater.

It’s been good to be home. Tristan is having a ball with his siblings. Each afternoon, Wednesday-Thursday-Friday, we walked up our ¼-mile long drive with the stroller and the dogs to meet the school bus. On Friday, Tristan walked the whole driveway on his own two feet, there and back, dressed as a Mongolian warrior. He was terrific.

 

Early Monday we’ll head back to San Francisco for Tristan’s lumbar puncture and chemo on Tuesday. Tuesday will be tough. As good as UCSF is, I consider it a major systems failure when they schedule a two year-old for an OR procedure at 3pm, no food or drink after midnight the night before. This is hard enough as it is — that is simply cruel. I plan to give anyone who’ll listen, and even those who won’t — doctors, nurses, anesthesiologists, OR cleaning staff — an earful.

On a lighter note — you won’t believe this — I went to Safeway in Eureka on Thursday to stock our shelves and…you guessed it…the firetruck was there and the firemen were shopping. I think that makes it the last four times I’ve been to the grocery store. These are really powerful data. I think I’m almost ready to publish the support for my hypothesis that firefighters love to cook. Still looking into which respected journal is the right medium for this earth-shattering work.

Tristan calls his illness “yookini”. Phoebe’s got it right now, but initially she called it, “zuchinia” Yookini sounds like a good cocktail to me, a personalized martini maybe?  Zuchinia is probably Phoebe’s worst nightmare given her aversion to green things, so it’s fitting for a scary disease, I guess.

Boy superhero flies from OR in cape, sans mask; Tuesday, September 8th

Tristan is in the OR, for his intrathecal (spinal) chemo. I’m waiting to be called….and now I’ve been called, so now I’m waiting by his bed for him to sleep off the anesthetic. His superhero cape, and belt are at the end of his bed, folded neatly and placed there by one of the OR nurses. He’s still wearing the cuffs.

He was an amazing trooper today, despite the no food/no drink order since last night. He was in a good mood, and funny, and upbeat. We watched movies in bed after we woke up this morning — I was happy for the distraction and the means to kill time without seeing food or smelling food or thinking about food. Then we went for a run. Then Tristan played in the playroom while I showered, changed, and packed up for the hospital. He put on his new (real) fire helmet, this one supplied by the Lancaster PA fire department. It’s so heavy, it makes his head fall over to one side, but he said he was thankful for the goggles when we went outside into the hot sun. “Mom, they keep the sun out of my eyes and keep fire out of the firemen’s eyes when they fight fires!”

We walked over to a nearby fire station to see if we could have a quick visit before heading to the children’s hospital, but nobody answered our buzzes — must have been out on a call. Tristan fell asleep in the car on the way to the hospital, and we arrived at parking lot early, so he finished his nap in the car with the AC on full blast (did I mention that it’s HOT in SF?) while I cleaned out my inbox on my phone.

Shortly after one we went in, and even the wait was smooth until we started to put on Tristan’s superhero gear and realized Mommy had forgotten the mask. I tried to fashion one out of a surgical mask by ripping eyeholes into it and putting it over Tristan’s eyes, rather than over his mouth. That failed, and that’s when my boy finally cracked. Three pm, no food in about 18 hours, and Mommy forgot the superhero mask and then totally failed to make a creative replacement. That would break anyone. Luckily the tantrum was interrupted by the team — attending doctor, resident, nurses, anesthesiologist — who were full steam ahead and ready to go. And that was that. Tristan is a rockstar.

Now we’re back at Family House and Tristan is tucking into a slice of pepperoni pizza and a bag of pirate booty. He’s feeling good. A moment ago he was flying around the playroom in his superhero costume (with mask). Just 15 minutes after he opened his eyes in the OR recovery room, and the nurse gave us the usual bit about keeping him quiet for the rest of the day, and how he’s likely be exhausted, and how I should be careful not letting him do anything that requires coordination…just 15 minutes after all that, he insisted on walking out of recovery on his own feet to get a chocolate chip cookie at the cafe on the ground floor. We were discharged, headed for the cafe, and ran into the attending doctor who had just overseen Tristan’s procedure. The man was stunned. Absolutely floored. “I have to say,” he said, “I’m impressed.” None of us would have been walking like Tristan the Two Year-Old just 15 minutes after waking from general anesthesia, not to mention the lumbar puncture. I explained that his post-procedure tantrum about not having a cookie at the bedside produced a significant pulse of adrenaline that washed the remaining anesthetic from Tristan’s system. The doctor nodded in agreement. “I see,” he said.

Tomorrow we’re heading back to Kneeland, and this time for almost two weeks. During this period, Tristan will continue a daily, oral chemo. When we return to the city, he’ll be done with Consolidation and will begin the Interim Maintenance phase of his treatment. That will consist of IV chemo every ten days for two months — so we’ll get a full week at home between trips to San Francisco. I’m looking forward to seeing family and friends and getting to be a part of Tomas and Phoebe’s school and homework routines.