Goodbye

Nurse Mary was spot on. Around 9:40, Thursday, August 20, Killian quietly slipped away. We knew and didn’t know it was coming. We were just hanging out with him—mom, dad and Killian. Phil happened to be holding his hand, and I happened to be playing ukulele and singing “Tonight You Belong To Me.” I was missing Killian on the harmony, and we were wondering if we could stay up all night. I think Killian decided we wouldn’t last.

We asked Cally how she wanted to be told when her brother died. She said that she wanted us to tell her when we were all together and to tell her “that Killian is somewhere where he doesn’t have cancer on his face and doesn’t hurt and can listen to all the iTunes he wants without paying.” She also said, “I want him to visit in my dreams.” From Hamlet: “To sleep: perchance to dream: ay, there’s the rub. For in that sleep of death what dreams may come when we have shuffled off this mortal coil.” At the same time Killian slipped away downstairs, Cally had awoken and come to Cat saying, “I feel awful, just awful… I woke up because this light was flashing in my eyes and now I just feel awful.” We told her that Killian passed away. She said she wanted to see him and ran downstairs, before we had a chance to say anything. When she saw him, she cried a bit. Eventually we went upstairs and put her in our bed. We told her that it was pretty obvious that Killian had visited her in her dream—just as she’d asked. She went right to sleep, with a smile on her face.

There’s a peace in his passing, though we know it precedes a lifetime of sorrow. However, we are determined to provide Cally with just as much laughter and love as there has always been in our home. There will be a public procession from St. Augustine’s Chapel in West Shokan to Bushkill Cemetary on September 13. Help bear witness to our commitment to joy—bring drums, ukuleles, whatever you can walk and play, and learn the tune “Blessed” by Brett Dennen.

I’m packing up the blog now. Thanks for comments: all were appreciated and provided us with grace. And please, keep spreading the word about Killian's Foundation http://www.killianmansfield.org and his album SOMEWHERE ELSE. Goodbye.

Last few days

August 16, 2009
Killian was semi-cognizant for 30 seconds, two times today, at which point he asked us to look up the definition of “sperm.” As I read it, he said, “yeah, zygote, that’s what I was thinking,” and went non-responsive. Hours later, he says (after struggling for a memory of a name for quite some time), “Ed came by and said he knows I’m bedridden, but wants to take me somewhere.” We haven’t seen Ed in months, but it does not seem strange that Killian gets a virtual visit from him. We said, “sure, you can go with Ed.”
August 18, 2009
Feel like I’m losing everything. Fought with BFF about choosing the date for Killian’s memorial. She wasn’t ready for it. Disagreement is too much, and all I can think is that I’m losing everything—my best friend, my dog’s affection, my ability to drive, my heart, my soul. After a half hour of wailing, I hear Dominca’s voice in my head telling me, “you’re not losing everything…you’re losing your son.”
August 19, 2009
Ed phones. We talk about what Killian said. Ed says, “I don’t know about all that…but I did have something I’d like to say to Killian. Please tell him ‘you did it’ for me. He took quite a load for this life and not only did it, but inspired a lot people in the process.” I get off the phone and tell Killian this. Everything else I’ve told him, about moving on, about there being a better place, about all of us being o.k., about him being o.k…. none of it resonates. “You did it” does. I get what Nurse Mary says will probably be the last verbal response. Killian, barely audible, says, “can you fix my eyes?” I say, “no, baby. I can’t fix your eyes. I can’t fix any of this.” His forehead furrows slightly in distress. I say, “but you do have the most beautiful eyes.” Always with the comedy, just like his father, Killian bats his eyelashes. I say, “I love you,” he mouths the same.
August 20, 2009
I describe the activities of the night, the breathing, the whatnot to Nurse Mary. “Just so I’m clear, here, this is what you people call “active dying, right?” Nurse Mary says, “yes. It won’t be long,”

More album news

The local paper did a story on Killian’s album, and the reporter asked about my blog. Some people are very private—suffer in silence. I don’t know that Phil or I made a conscience decision to hang it all out there, but we’ve definitely not been private. We had the store, we lived in the store, people saw our children in their pajamas, and Phil and me “fresh” out of bed at 6 am. I started the blog in this vein, but also for practical reasons—too many individual contacts lapsed in the desperate search for a cure. At this point, though, baring it all in writing feels like the trail of breadcrumbs left behind so I can find myself again.

I get glimmers of a sort of sad that I know I’ll be swimming in soon. Now, I’m just wading in and out when there’s quiet. Other times, I’m loudly crazy. My coffee maker stopped working, spilling almost two quarts of granulated coffee water all over the kitchen counter. So desperate for coffee was I, that I tried the whole thing again (“maybe it’s not really broken, I think I didn’t grind enough…yeah…”) And again, the testy machine belched massive amounts of liquid all over my counter and floor, prompting a stream of expletives, ridiculous blame-seeking and a hurled stick of butter, followed by a long sob session and muttering about everything falling to pieces. BFF Breon called during the sobbing. I ratchet up more sobbing into the phone, telling her everything’s falling to pieces, “…and I have a terrible, terrible temperament!” Why she’s my best friend: “yes, you do honey, but I love you and I know you won’t sit around in self pity but will be the survivor I know you are and make a list of those things that are driving you crazy, get some help with those things, and get a new coffee machine.”

Phil’s so present for us, so loving, so funny. I can’t see where his ouchy is, what this is doing to him. Send love, prayers, thoughts, pink-healing light, or virtual vitamins to him. Here’s the article that reporter did about Killian in our local paper, the Woodstock Times.

"Let the Children Boogie!"

We got up early this morning--by that I mean early for people who don't sleep much throughout the night, but not school-in-session-early. Killian was psyched about going on the Don Imus Show. He'd heard that Mr. Imus was going to have kids dealing with cancer in his studio and knew that Imus, himself, is dealing with cancer. He just wanted to ask them if any of them had had acupuncture. In anticipation that few had, he wanted to just say "don't be afraid of the needles--it helps." Those couple of sentences were hard for him. He's got no air, the tumor in his mouth obstructs speech, and he can't hear out of his left ear because of the tumor there. But he had metered that question and that statement and figured out he could say that much. What he does to speak is to press with two fingers on the tumor near the ear, he can hear and speak a little better. But, just as he was preparing to go on, he realized if he did that, he wouldn't be able to hold the phone (as he can't lift his other arm at all now). This realization hit him about 15 minutes before the show. He spent about 30 seconds being really upset, then shifted into making sure mom and dad were prepared to represent.

Phil and I got in most of what he and Cat wanted us to cover. Honestly, Imus was great and covered what we didn't. As instructed, I asked the kids in his studio and Mr. Imus if they'd ever had acupuncture. A couple had, and Imus said he had but that he "didn't really feel anything." I suppressed the smart ass in me that wanted to ask if he'd ever had sensitivity issues, and made Killian's point. I'd really like to meet Deirdre Imus. I like the work she's doing through her Environmental Center for Pediatric Oncology.

Response from Imus has already been huge. Thank you Mr. Imus. Somewhere Else is climbing up the Amazon list, and with that comes increased visibility. We've launched our "velocity campaign" (I think Cat made this phrase up, but I like it). We're hoping everyone will buy through Amazon TODAY. Go here, BUY NOW, "let the children boogie!"

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!