War (hunh), What is it Good For?

I keep thinking of that one line from Country Joe & the Fish, “and it’s one, two, three, what are we fightin’ for?” The rest of the song doesn’t fit—pointless violence, wasted lives… But that one line is in my head.

Killian casually mentioned this morning that more cancer is in his other arm—the one not radiated—and he feels like he’s losing function of it. We continue to dress the large wound on his face, which is a constant challenge as it continues to grow—these days, within the day. He’s developed a pressure sore on his very tiny butt, breathing is more labored, a tooth is falling out…but this is what happens with someone who is very ill, who has been very ill for a long time, who continues to fight.

Cat was outside, urging Moses “do your business, already!!” It was raining, and Moses would rather explode with held-in waste than go out in the rain. He hates water. Killian asked, “why is he so stupid that way?” Not meaning to compare him to a dog, but doing so anyway, I reminded Killian of his own fear of water when he was but a lad. I had to carry him through puddles, and he usually cried during baths. Coming home in the rain from pre-school once, I was carrying him over a large puddle, and in a panic he scurried up my body into a choke hold on my neck screaming, “I’m drowning, I’m drowning!” His response to this tale, “at least I knew when to pee.” We then got into a discussion about the possibility of past lives. “I’m not a Buddhist, I don’t think,” he said. “I don’t consider freedom from choice a higher state. I don’t think having choices is suffering.” Killian has been talking to chaplains from all sorts of religions lately. “I do think there might be something to reincarnation…just not sure about the rest.” More song lyrics in my head: “Freedom’s just another word for nothing left to lose.” And then I start thinking about Janis Joplin and the 40th anniversary of Woodstock coming up. And then I think about how consistently in my head the song “Rudolph the Red Nose Reindeer” has been lately...

He's sorting it out. I'm in a gerbil cage.

Updates

I feel the energy of collective grief. It's like being sandwiched between two sets of chests, silent-listening to muffled hearts beating in my ears. It's comforting, but I have no idea what to do with it except listen and breath.

Everyone wants us to tell them what we'd like, what we need, what they can do... I love the love, but can't say, can't decide, can't answer. I can say I look forward to brushing my teeth--that I can decide. My teeth need to be brushed, we have a routine, me and my teeth. We're in sync. I'm so sorry I'm so out of sync with everyone else.

Updates. That's a misnomer if ever I heard one. We have nothing "up" to report and god only knows what date it is today. Killian's body is failing him a bit more every day. There isn't much else to say about that.

I think I'll have something uplifting to announce SOON about Killian's album, the Killian Mansfield Pavilion or the Killian Mansfield Foundation. Hang in there folks.

Back Home

We’re headed home this evening. Killian just finished his third course of radiation and his back should feel somewhat better soon—maybe by next week. We’ll go home to a different set up. He asked for a hospital bed, as it’s almost impossible to get comfortable unless he can change positions easily throughout the night. The delivery guy came this afternoon, and I understand from Cat that the bed's been delivered. Jim and Sharon Sofranko came over to move the TV down to his room so he can get lost in movies, games, whatever. Jim hooked our TV up so we could watch movies, play video games or watch TV with a simple press of the remote. Ingenious. Setting this up has eluded the Mansfields and our relations for three+ years—since we acquired this very TV set. If electronic divertissements were life sustaining, we’d be rooted out by natural selection, while the Sofranko clan thrived.

The other set up is that Killian will have a unit hooked up to his port to deliver a steady stream of intravenous meds. That’s fine, as long as there are no acute incidences of pain (which is like saying we can do without a toilet as long there are no incidences of urination). The medication he prefers for breakthrough pain can’t (by law) be dispensed intravenously by me—a nurse must do it. We don’t get a round-the-clock nurse. Not sure we want one anyway. Apparently, there’s no issue whatsoever (by law) if I accidentally overdose him with an oral opiate solution. They just don’t want me accidentally overdosing him intravenously. I add that to the long list of health care mysteries that elude me. I suppose he'll be fine with the oral solution.

Last night, a lot of anger played in my head. Phil says he gets waves of it about “the healthcare system.” I get waves of it about various subjects: people who have recently hurt me, people who hurt me in the past, raccoons…pretty much in that order last night. Today I did played the angry hospital scene (remember Shirley McLain in Terms of Endearment?) I’d no sooner taken a breath from that nonsense, when I found myself going off on an anger dump about meds (see above). I realize, though, after weeks of predominant sadness—being sad robs you of your response mechanisms. We need adrenaline at the ready. We’re taking our boy home and we’re on our toes.
#@$* raccoons!

Home Away From

We checked into Benedictine Hospital yesterday, as we were unable to manage Killian’s pain at home. A spot near mid-spine sent Killian into a wheel chair last week. He kept asking people to poke their fingers down deep in a certain spot to relieve the pain. Once, when I had my thumb in up to the knuckle, I felt something I suspected was disease. Little Jack Horner from hell. Josh (acupuncturist) thought so too when he came over to work on Killian. Frankly, I think Killian knew all along it was disease. However, when the spot was confirmed as more cancer this morning he was very, very upset. He said, “I feel stupid that I just keep hoping.” But, not even a half hour later he was laughing about something. A tipsy guy was giving stupid answers on Cash Cab. It’s clear the preservation of hope is his life force. He disconnects from what is happening in his body so he can wring enjoyment out of every moment possible. The disease on his spine eroded bone. There’s a fracture. His back is broken, and he’s laughing because the Cash Cab drunk couldn’t remember the word “kibbutz.” It’s infectious.

We have the most beautiful view we’ve ever had in a hospital. Killian’s drifting in and out, but says “wake me when the stars are out.” Last night he had quite a bit a bleeding, and it looks like it’s starting again. As usual, we’re able to manage it with Yunan Baiyo. That, and the remarkable clotting power of his otherwise healthy young body. They let us use Yunan Baiyo here without the docs freaking out. We’re on the hospice floor, and they pretty much let you do anything short of a keg party here.

The plan is 3 days of radiation to the spine. The first was today. It’s conceivable we could go home by the weekend—depends on how well the pain is managed

FIDDLE & DANCE

Dominica, our social worker from Hospice, says, “Killian is drinking VERY deeply from the cup of life.” It’s been a comforting phrase for us and helps steer a positive perspective throughout the more difficult moments. Sometimes, however, I get an image in my head of Pooh, struggling so hard to extract honey bits from the bottom of the jar that he gets stuck. Pooh was too witless to feel embarrassed, or angry, or frustrated about being stuck: he felt “bothered.” In contrast, Killian struggles with many feelings—from sadness to intense anger—because his body leaves him stuck. But he keeps drinking….deeply drinking.

This week Killian attended the Ashokan Fiddle & Dance Western Swing Week camp. To characterize the culture of this group is not easy—they run the gamut from good ole’ boy Texans and college professors to Red Hat women and precocious kids. What they have in common is guts. Each year, for a vacation, campers brave considerable wetness (being the first of the Fiddle & Dance sessions of the season, they’re subject to the most seasonably-incessant rain the Catskills can dish out), and overcome ego obstacles as they expand past their comfort zones to learn new dances or songs (in front of their children, and their girlfriends and strangers no less!) So, they got guts. Lots.

Ashokan is a rustic camp and not meant, in any way, to accommodate seriously ill people (much less children). I gave Jay and Molly and select people a heads-up about what condition Killian is in, fully anticipating that his being at camp might be too much and they’d ask us to reconsider. They didn’t. I told them I would be at camp with Killian, and that he would likely only be there a few hours each day. I said I would be armed with all the medical equipment we use at home and ready for anything that might happen (which is abstractly true). I suggested I give a heads-up and reassurance to all the campers at their first gathering. Jay wondered how this might hit the newbie campers. After a few seconds, he decided that communities form in support of all members at these camps—regardless of their strengths or weaknesses. Heart-filled guts.

I did a little talk at the first gathering, but then (at Killian’s request) kept a low profile at camp. I described my role as Geisha Mom (walk 10 feet behind, with eyes cast down and try not to be seen using the cell), but really I was kept mercifully busy the rest of the time volunteering in the office. Killian went to camp all but one day, and made it most of the way through the culminating evening performance—wherein he performed with 3 groups. Highlights of the week, according to Killian, included learning the basics of minstrel/pre-civil war style banjo, seeing Katie, Max, Lilly, Ava and the gang again, ukestra, the Django band, and jamming with Robert and Matt.

The moment of moments was suggested by one of the campers. Jay came to Phil and me before the final Root Night show and asked how we would feel about them naming the performance pavilion the “Killian Mansfield Pavilion.” Both of us welled and were beyond touched. We reached for one another to hold each other up. Jay asked if it was O.K. if he announced it that night during Root Night—wondering how Killian might feel. Phil was sure Killian would love it. We both went from tears to laughter when we realized how the rhyme would rule—that it would be called “Killian Pavilion” regardless. And, that’s just how Jay announced it. After the announcement, a surprised Killian said, “It’s so sweet, so sweet, and means so much.”

Jay, Molly, all the Western and Swing Week folk lifted our boy’s spirits in a way only they could. Killian made me stop at one point when I was walking him to a class and said, “this place is incredibly special: you swim in music as you walk, you eat and sleep in amazing music… and it just makes all this beauty here more beautiful.” The Ashokan Foundation is preserving this slice of heaven. The main structures have to be torn down and rebuilt in the next two years. The Killian Pavilion, along with some of the historical buildings will be the only structures staying the same. Here’s a link to a film about what’s happening at Ashokan Center. We’d love it if we could give back—even a little—of what this place (and its stewards) have given Killian and us. If you want to help, please make a donation in Killian’s name to the Ashokan Foundation. When you get an email confirmation, return the email and let the folks at Ashokan you made the donation in Killian’s name.