Storm King

Phil said, “we’re living Einstein’s theory of relativity…time changes based on perspective.” One day last week, shattered, he’d swept me off the floor and had taken me out for a walk. We realized we are in a spaceship: we exercise, eat, watch movies, drive the ship a little, tend tomato plants, play music, cook, write, go on hikes (it’s a big spaceship)… Because we move at the speed of light, it seems like nothing much changes within our ship. We grow beards—Phil, me, Killian, Cally, the cat (the dog already has one)…and only when friends and relatives make contact, and seeing their beards grey, do we realize how different the passing of time has been for them. They talk about plans. It’s hard to imagine how we can possibly reconcile the differences in time. We decline plans. This upsets some people, adding worry lines to their grey-bearded faces. We think about putting a sign on our door that reads, “no grey-bearded, sad or worried faces allowed,” but realize it would only mystify those entering an already mystifying situation.

When Killian feels well, we feel like we have time, the same kind of time everyone else is keeping. When he doesn’t feel well, time conflates. There are hours in a day now when we keep the same time as the rest of the world, not days in a week.

Sometimes Killian animates—most often for visitors. He decided, suddenly, he was well enough to go to Storm King Sunday. We walked Maya Lin’s Wave Field. We watched Cally run the waves, arms outstretched, using momentum from down to run up, making like a bobbing sailboat. They fought in the car on the way home, then they slept, leaning on each other for the rest of the ride. If the slice of that day were all you saw, you might not understand how things have changed.

Nice Peace

I’m watching Killian play the jazz standard Guilty with Phil on the porch. Yesterday, Killian flexed his forearm for the first time in a month and said, “it doesn’t hurt when I do this.” As the sun lowers, that’s his 2nd day with no pain “in months and months.” My guess is, the radiation to the arm has kicked in and has killed enough of the encroaching bone disease to put an end to the pain there. We are drinking in the peace, gulping it actually. Though many exciting things are happening with Killian’s music project, he was thrilled most for Cally today. They are so dear, and their relationship is such a gift for Phil and me. One year ago, she began asking the editor of the local bi-weekly, the Olive Press, if she could take over the Kids’ Page. This column has been written by another girl for maybe four years or more, and Cally had VERY strong ideas about what she’d like to do with it. The editor of the paper told her to start with letters to the editor. So, one year and lots of letters later, he contacted her to say she had the column! AND, though she has a real deadline, she gets paid! She says her first purchase will be a Sham-Wow. She emailed the editor, “I feel like I will stick with this forever… this is something I can really call my own.” Here’s her first column (if you’re local, pick up this week’s Olive Press OR Phoenicia Times and look at the back page (prime newspaper real estate, by the way…)

The Death of Try-it Tuesday

Last year, we had this lunch thing called Try-It Tuesday. It was supposed to make us like more kinds of foods. Some kids won’t even eat chicken patties, and Try-It Tuesdays were mostly about expanding our palates toward veggies. They would have ratatouille (like the movie), steamed broccoli, asparagus, and this really cool chickpea salad. I thought the Try -It Tuesday was most often good. I think I was the only one that liked the chickpea salad though. Probably a quarter of the kids in my school liked Try-It Tuesday food.

This year, we haven’t had Try-It Tuesday at all. The population of kids liking Try-It Tuesday was going down. My mom said they should start Vegan Wednesday, but I completely disagree. I told her kids would be upset by this, and that it would break their tiny, minimized, non-food-tasting hearts. But, I miss Try-It Tuesdays.

I would love it if we could grow veggies at school. We could take care of them, and it could be our responsibility. That would be so awesome! If the lunch ladies used the veggies we grew, I think kids would eat more kinds of veggies. It would taste fresher, and be more interesting because it would be what we grew. My brother said the Green Committee at the High School was talking about this. Editor, maybe you could ask your readers if they want to help me start a vegetable garden at Bennett. If they do, maybe they could contact Holly Heppner, who is working on the garden and wants to do vegetables too. I think if we make food with our hearts, the chances are the food will taste better.

C-a-l-l-y!!!!!! (Mansfield, 3rd Grader)

Town of Olive

Thursday, in the gray and wet and cold, a 16 year old in Killian’s school named Max left his home just after a near sunless dawn, went to the Ashokan Reservoir, at a dividing weir called the Lemon Squeeze, and hurled his body off the bridge. He paused long enough to phone the police and tell them what he was about to do. Then, a moment later, ended his life. His parents have no closure. There are days when I think there is no such thing as closure. Then, I imagine there is a book being written, called The Town of Olive, and all the stories in it become inspirational life lessons for millions around the world, and people find true comfort in the wisdoms of this book. I imagine this town called Olive as a later day epicenter of human struggles directly informed by our ebb from or flow toward the divine. God, in this book, wants us to find each other and to love one another. But, we’re the ones, we people of the town of Olive, who make these stories a really good read—a potboiler. Max ripped out the pages of his story before it was finished. The other stories change too, because of these ripped out pages. Some of the changed stories get edited out because they are not inspirational—stories about bitterness, regret, too much drinking, being stuck… And, some become the best stories in the book.

That same day, Killian went to school at 11:00 a.m., after having a bad morning with pain. He’d done so much morphine and was so worn out by the pain (as well as the final radiation treatment for the disease in his arm), that he wasn’t sure he could make it through school. We went to a café, and after tea and a tart he said he thought he’d like to go. When he got to school at least a hundred kids were wearing blue shirts that read, “Team Killian” on the front, and “Just Appreciating Life” on the back. A girl named Gabriel, inspired by Killian, made the shirts. The project is, as I understand it, an expression of recent positive changes in her life, a new direction for her. The counselor at the school phoned me a couple of hours later to say that she had spoken with Killian about Max and that he seemed upset, saying to her, “it’s not fair.” I asked if it seemed as if I should come get him, and she didn’t think so. By the end of the school day, the parking lot was ridiculously full, cars parked every which way. All the parents felt they needed to be there for their sons and daughters. I, myself, had turned down several offers to pick up Killian to insinuate my car there. Nobody was “thinking green.” Killian got in the car and told me about the t-shirts, saying, “I felt the love, I did, but it was so weird that it was on the same day Max committed suicide—this message in everyone’s face.” I told him that the counselor had phoned me. He said, “why would she phone you?” I said, “because you seemed a little upset when she spoke to you.” Killian’s face screwed up all perplexed, “I didn’t speak to a counselor today.” I let it go. His perceptions have been changing. My new prayer is for his perceptions not to stress him out or upset him

Happy Mothers' Day

Killian wasn't quite up to the ukulele lesson today. He did go out and see his friends' band (named "Tell Him I'm Ugly" -- VERY funny name, right?). Cally went with Phil (and the Girl Scouts) to see the circus. I stayed around in the house in an unshakable funk. I'm having an issue with Mother's Day this year. I don't have anything against its commercial inception, n0r is it an annual let down. Mom's Day is usually a bit of fun for me. This year, I just feel like I resent the whole idea. I reckon that makes it a good time to get out of self reflection.

Here's to my mom--I would not be me with any other mother (so, thanks and a very happy Mother's Day to you). I want to recognize the loss of the grand dame of the North and the grand dame of the South. Here's to Phil's grandmother and my grandmother who both passed away this year. We could attend neither funerals nor memorial services for either moms of moms, but we feel the firm foundation of their blended dynasties guiding us. Here's to Phil's mom. Marlene would be pleased with her daughter's growth and would bask in the joy of her engagement. Here's to all the other inspirational moms I know and look to daily for guidance. Have a great day.

A Shot in the Arm

My BFF mentioned that maybe Killian could get radiation in Kingston (only 30 miles away). I checked out a facility affiliated with Vassar there, but they initially said they didn’t treat children. I pushed—only had to a little—and Dr. Tapen agreed to treat Killian. She fit him in today, did the simulation today, and will do the first treatment tomorrow on Killian’s arm. She’ll do a fairly high dose, so there only needs to be a total of five treatments. All in all…a good day I’d say.

Tomorrow, after treatment, Killian will head into the recording studio with Ralph to sing on the only song not finished. The aim is to have all mixes finalized and sent for mastering by early next week. Soooooo close. After studio work, I drive Killian to NYC for the consult about a possible nerve block. I will drive happily, knowing that I don’t have to do that two-hour drive every day for three weeks. The hope with the nerve block and the radiation is that Killian will be able to play ukulele again. He’s out of commission right now. However, Killian will still give his Saturday morning lesson to the Ladies Who Uke. This week, we work on Fools Rush In and Goodnight Irene. He told me OOOO Child is too hard for me yet. "Yet," he said.

Back and Forth

Monday, we headed in for tests, tests and more tests in anticipation of starting a new clinical trial. On the way in, he had a pain crisis. We pulled over and administered morphine. This put Killian into an emotional nosedive because the source of the pain was his knee—new terror. Once tests were over, he had a long consultation with Dr. G. about the trial. He has been ambivalent about any chemo, and the conversation started in that context. After saying he believed there was cancer in his knee, he asked Dr. G. “what about what’s in my lung?” She said, “there’s a spot like this,” putting forefinger to thumb tip making the O.K. sign. I was thinking when I worked at Disney World we were told to never make this gesture—it means f___ you in Brazil or somewhere…. At this point, he said he wanted the drug, a Phase II antibody that seems like it might be promising for many sarcoma patients.

Today we did the two-hour drive into NYC to start the antibody (an IGF-R inhibitor). When we got there, Dr. G. said the scans done Monday revealed that some cancer had infiltrated his skull and was close enough to the brain to make him ineligible for the trial. We won't be looking at anymore trials now because this development pretty much universally disqualifies him for relevant trials.

I expected Killian to despair, rage, or at very least exhibit signs of depression. He didn’t even flinch. Not even a little. Almost casually, he asked if he could get some radiation on his arm so he could keep playing ukulele. Dr. G. said she would try to arrange him getting some this week. We’re already scheduled to be back in NYC Friday to consult with a pain guy about a nerve block to his arm.

We’re closer to a deal with the record company to get Killian’s music out to the world. We listened to a couple of songs today and I told Killian, “I’ve never recorded anything I felt was really finished. These songs are so good that I really can’t think of a single little thing I would change.” He took that in—along with the music and the moment, “yeah, it’s good….”