Approaching enlightenment

Monday, March 8th
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For the first time in several months, Tristan and I are home for longer than what usually seems like just enough time to unpack, do the laundry, and pack again. This is the three-week break before Tristan starts Maintenance.

Right now he’s reaching the end, I think, of a nap that has already been three and a half hours long. The cold he developed after the scary fever a week and a half ago lingers on. Tomas and I got it too, but seem to be done with it. Tristan’s last dose of chemo was bigger than ever, the doctor attending in the clinic last Tuesday told me gleefully, “because his numbers have been SOOOO good!!” (Really, I don’t know how they can be so…so chipper about giving chemotherapy to children.) So now he’s pretty run down. Maybe this nap is just what he needs to bounce back.

In celebration of getting done with the gnarly chemos and soon moving onto once-a-month Maintenance, I sat down with my monthly planners and my emails and worked through them to calculate the following magic number: SEVENTEEN. That’s how many trips, since mid-July, Tristan and I made to San Francisco, or how many we made home, depending on how you look at it. Hard to say. That’s 9,393 miles of driving, already adjusted for the first leg down, which happened on a medevac plane. It’s also about 180 hours of driving, much of it pretty quiet and meditative. Huh, no wonder I feel so close to enlightenment…Not really, but truly there was something enjoyable about all that time for just thinking.

Last week Tomas joined us for our trip to San Francisco, and my parents also happened to be down in the city visiting my brother at the same time. Tuesday morning Tomas and I took Tristan to have his bloodwork done at UCSF. The numbers were great. As I mentioned above, this was cause to go ahead with a giant dose of chemo on Wednesday, but it also gave me an excuse to throw caution to the wind and take the kids, at Tomas’ request, to the Cal Academy of Sciences on Tuesday afternoon. Tomas, who has been there before, led Tristan, my mother, and me on a tour. What a spectacular place! I was absolutely besotted by the beautiful stingrays swimming just out of arm’s reach. Tristan was in heaven to finally get out and DO SOMETHING.

Oma treated us to ice cream from a truck after the Cal Academy — the weather was spectacular. My mom, bless ‘er, spent the afternoon with us at Family House and slogged through pages of Tomas’ independent study homework with him. That evening we met Chris and Agi and my father for dinner at a place with outdoor seating on 9th Avenue. At the table, Tristan carefully colored in an owl, all in red. He was adamant that no other colors should taint that piece of art.


On Wednesday morning we had breakfast in Golden Gate Park with my friends Tanya and Kevin, who had just been in Monterey to attach a microtransmitter to a particular hoary bat of interest to the Forest Service (talk about cool work). We kicked a soccer ball around. The sunshine and fresh air were great, but I was already feeling more than a bit of negative anticipation about that afternoon’s clinic visit.

I won’t belabor this part of the story. I’ve already described this scene so many times. So instead I’ll just quote my mom, who came with us. “It was horrible.” Everything took forever, and Tristan went bonkers. There you have it. Recently I discovered that I have online access to some of the doctors’ notes after each visit, and that, over the last couple of clinic visits, Tristan has been labelled with a “Behavioral Problem”. Here’s my favorite part: “Mom handling the problem appropriately but clearly stressed.” You betcha. I’m definitely stressed, and increasingly so as Tristan’s tantrums get worse with each visit. And the thing that kills me is that I get it. I get exactly why he’s going apeshit. There’s the basic, awful stuff like getting a needle stuck into your chest, which he can’t feel but is still a horror show, and having the adhesive tape pulled off of the access needle after each chemo, with does hurt, but that’s not really  it. The thing that drives Tristan nuts is that he is given no choice. He has absolutely no say in what’s going to happen in the end. And he’s too smart to be suckered by the decoy choices he’s given, over many minutes of negotiation, by the nurses: Would you like to sit in this chair, or in that chair? Would you like us to clean your skin with alcohol, or with Betadine? Would you like to play on an iPad, or would you like to watch a movie while we give you your medicine? None of it works. Tristan knows what’s going to happen, and he doesn’t want that gooey numbing cream on this chest or the needle poking into his chest or those tubes hanging off of him for any length of time. The doctors are clearly still wanting to use his port for the monthly clinic chemos, and are hoping that Tristan’s response will be less extreme when we’re coming less frequently. Let’s hope so…but I dunno. He’s one smart cookie.

After we finished at the clinic, and my mom and I were both in tatters, we walked a few blocks from the hospital with the boys to make a brief appearance at the grand opening of the new Family House. They won’t begin housing patients and their families there until the end of this month, but held a party to celebrate the end of the major construction. The Family House staff and the frequent — and permanent — inhabitants of the old Family House have been eagerly awaiting the chance to see the finished building. We were not disappointed. Family House’s fundraising team skillfully found 43 million dollars for the project, and, holy smokes, it’s absolutely amazing. Full of sunlight and donated Pottery Barn furniture, it looks like a boutique hotel. Nobody who stays at Family House is there for fun, so what a treat! Tomas, who craves luxury, was blown away.

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My mother drove home with us on Thursday, as my father had left the city the day before. The drive was not quite so meditative as I was hoping it would be because, for the two hours to Willits, the two grownups were engaged in coaxing Tomas through another pile of homework. Torture, but it got done.

Tomas’ tenth birthday was a three-day affair, with ice cream at school on Friday, a movie and pizza down in town with friends on Saturday, and family champagne and chocolate torte on Sunday evening. From Tomas on turning ten: “It was awesome.” Phew. We passed. Gary and I congratulated each other.

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This Sunday the 13th most of Team Kneeland will be doing either a 10-mile or a 4-mile warm up race — The Foggy Bottom Milk Run — in preparation for our half marathon on May 1st. We’ve had a great response to our initial requests for donations to support The Leukemia & Lymphoma Society and are already more than 50% to our fundraising target. You donate to support cancer research, we run!

http://pages.teamintraining.org/gba/yourway16/agorog

Home until March 21st!

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