Sunday, November 22nd
Not sure what it’s preparing me for, but I feel like I’m in some kind of hardcore special ops boot camp. Chemo Camp. I have no idea what special ops training is really like, so this is all based on a superficial image formed by catching bits and pieces of bad fictional movies. But, in my training, instead of a curriculum involving having my head immersed in water, sleep deprivation, crawling miles through thick mud, carrying a massive log for hours, and being tossed into a pool with my limbs bound, instead of all that, my phases of training involve being one-on-one with a three year-old on massive doses of steroids, catering day after day to his mood swings and binge eating; being required to starve my son for 18 hours at a time, time after time, before trips to the OR; forcibly holding his steroid-raging little body while nurses access his port; and sitting to the side while poisons are pumped through this body. It’s horrible. Maybe I’ll come out of this, to borrow a Drew Barrymore line from one of my most favorite films ever, with the heart of a rhino. (From Charlie’s Angels — I have such sophisticated taste).
I’ll definitely come out of this with a healthy cancer-free Tristan. That’s the big prize. But that doesn’t mean that Chemo Camp doesn’t totally suck.
There is, on the other hand, a good side to this all. Aside from the couple of days before leaving home each time, during which I’m uncontrollably sad about leaving the rest of the family and our animals and our place, I look forward to these trips with Tristan. I look forward to having special time with him. I look forward to having a break from the work of home. I look forward to seeing friends and family who live in San Francisco. And, strangely, I look forward to seeing our favorite doctors and nurses and friends at the hospital and clinic. At the beginning of this crazy adventure back in July, I hadn’t anticipated that one outcome of all this would be that Tristan and I would have our own, separate life in the city, one that we can enjoy on some level. To my horror, I just learned from a friend with a psychology background that, not only is this common for parents of pediatric patients, it’s also one manifestation of Stockholm Syndrome, best known for the instance in which hostages become emotionally attached to their captors. Great. Somebody please find me a good therapist. Still, syndrome or not, it’s nice to have a positive side to being away from home so much. I’ll take it.
This past week we had two appointments at the clinic. On Tuesday, after a trip to the OR for a lumbar puncture, Tristan began Delayed Intensification and received his first doxorubicin. He’ll get it again the next two Tuesdays in a row. Getting a new chemo is always stressful, as I don’t know if Tristan will have an allergic reaction or some other awful response, and this particular drug is known to cause heart failure, though usually at higher doses than what Tristan is getting. It’s the reason Tristan will need to have an EKG every five years for…dunno how long. Friday he got his second chemo with peg asparaginase. He had received this drug before in July, on Day 4 of his treatment, but I think I was so out of it that I didn’t understand much about it. Well, yesterday in the clinic there was a nervous crackle in the air when the nurse came in to begin prepping Tristan. Turns out 50% of patients have an allergic reaction to peg, and it doesn’t matter if they had no reaction during the earlier dose. The reaction may be just hives, but maybe something much worse. So, the metal tray that’s rolled in with the chemo in its specially sealed DANGER CHEMO DRUG bag also carries epinephrine. You know, just in case you need it. I cried while the nurse sat bedside for half an hour to check Tristan’s vitals and look at his skin. The whole clinic visit took five hours. Needless to say, Tristan did not have a reaction. He’s fine.
Also with the start of Delayed Intensification, Tristan began steroids again, this time on a truly monstrous dosage. Fortunately this time around it’s not for 28 days straight, but rather for two week long pulses with a week off in between. He’s definitely showing all of the side effects, flipping between furious frustration and manic babbling. This morning he rambled about his delicious hard-boiled egg. We have met Gary and the bigger kids for a weekend at a hot springs halfway between San Francisco and home. The other guests at the B&B thought his enthusiasm about hard-boiled eggs was adorable. I declined to explain that his cuteness is steroid-induced.
It’s good to be here with the rest of the family. We have a cottage with a kitchen and (yay!) no TV. Gary showed up with a blender and a bag of limes, and made us fantastic margaritas last night. He cooked burgers and mac and cheese and rice and anything else anybody wanted while I read books on the couch with the kids. The weekend was designed especially with Tomas, who loves to be in the lap of luxury, in mind, so it was a bummer when he erupted in hives after soaking in the mineral hot bath. But we scrounged some Benedryl from the owners and his skin has returned to its mocha perfection. We just returned from a beautiful hike through chaparral and into a streamside pepperwood forest, where we saw red-bellied newts and an enormous dead rattlesnake. We were stunned that all three of our kids walked the whole way, with only a minor complaint now and then. I don’t know how Tristan did it — he could not walk all the way back to our cottage from breakfast this morning. Must have been the beautiful setting, the special walking sticks Tomas found for everyone, and the good moods all around.
Tomorrow Tristan and I will return to the city for another chemo appointment on Tuesday, and Gary will drive back home with Tomas and Phoebe. I’m happy that we’ll be home before Thanksgiving and will celebrate with family.