Monday, January 26, 2009

Deviant Octobpus

The first thing Killian asked me when he woke this morning was, "what's the definition of 'deviant?" I told him a, "a pervert," but then remembered that it's also someone who goes outside the accepted norm of behavior. Later in the morning, when he was waiting for radiation, he drew this squid (see sidebar), with a smoking cigarette in each tentacle. I asked him why the squid was smoking. He said, "it helps him get around." "Like a social crutch?" I asked, "Or, do you mean locomotively get around?" "I don't know... Social crutch I guess." Our conversations have often been about rebellion, or being an outsider these days. I'm so old now, though. It can't be any fun to have these discussions with me. Thank the stars we'll see a real, live teenager tonight. Max and his mom are taking us out for a yay-radiation-is-over dinner. Tomorrow is the last day. Hot diggety dog!

Friday, January 23, 2009

Six String Uke

John Pizzarelli visited Killian - arranged through Hole in the Wall Gang Camp, but more through John, who actually really checks in to see how campers are doing. When he called to arrange a time at McDonald House to see Killian, I mentioned Killian's obsession with ukulele. John said he would bring a rare six string uke. Killian was thrilled that he was coming to visit. We'd just listened to "Rhode Island" on the radio. He was skeptical about "this six string uke..." "I think he might have meant an octave guitar or something. You sure he said that mom? A six string uke: it's a guitar if it has six strings..." John was charming. And, it proved to be a ukulele after all. Two of the strings have double strings. The lowest note is doubled by the octave above, and the highest string is similarly doubled. Killian says, "it gives it more ooomph." John loaned him the instrument. I can't believe he did, but he did. Since then, Killian has not put it down. "Pinball Wizard" sound particularly amazing on it!

John was telling us about a tour he was doing next week, and said that the first leg began in Wilmington, NC. I told him that I would be down there around that time. Killian got really excited about the idea of going... I contacted Dr. G. It's a tough call, but clearly mine and Phil's to make. Anything and everything could happen. However, he hasn't had bleeding or pain crises in a while. I have all the drugs any emergency room would have to deal with pain and bleeding. Whatever....with Phil's support, I'm taking Killian and Moses down to NC. It'll be a quick down and up, as I don't want him to be far from his hospital for too long. My mother will be visiting up here, so she can help drive down. We'll stop briefly by the farm and then head down to Wilmington. Quite the adventure. 

Friday, January 16, 2009

Marking Days

Unless the radiation machine breaks down (which has been known to happen), Killian finishes treatment on Jan. 27. That's also seven days into our new president, the first day after the Chinese New Year. My year, and Phil's year, and Barack Obama's according to the Chinese - the year of the ox. With Killian feeling so much better, freshness in the air, and the "miracle on the Hudson" that occurred yesterday, I feel a bit heady. 155 people in a plane dropped out of the sky when the plane's engines suddenly stopped AND THEY'RE STILL ALIVE. Heroes arose. It wasn't all luck. For a second there, I wanted to believe the pilot was just competent -- that any pilot would know how to do this, and I could be safe boarding any plane. Even if that's so (and it's a stretch of an argument to make because what that pilot did was amazing), there are the ferry drivers. Those guys weren't trained for that. Honor the heroes. Honor the everyday heroes too. Whether someone is risking life or limb, or risking reputation or red cent. The Mansfields know so much about the reputation-or-red-cent heroes. They keep fishing us out, propping us up, making sure we go on. 

Thursday, January 15, 2009

Likes People...

Killian has always preferred the company of people. It may be the din he was raised in. He's a fantastic contributor to the familial noise too. By extension, he zones in on people trying to disconnect from society. He's slightly obsessed with people who withdraw and targets them by including them in his life. I remember when we moved from Manhattan to the Bronx, we'd been living with a musician named Richard. Though Richard did on occasion babysit Killian, I would not say that they were particularly bonded. Richard kept to himself. When we moved, Killian was completely fixed on the idea of frequently visiting him. It felt like an odd request to me, but I tried to honor it. We tried to call Richard. We left notes. Richard did not return our calls or respond to our notes. At one point, I told Killian that I thought Richard had new people, and maybe someday he might respond to our calls and notes. Killian pleaded that we needed to keep trying to contact him, saying, "I want him to be family because I think he might not have anyone." Killian's latest target is Mike, the shuttle driver at McDonald House. 

Mike the shuttle driver is pretty much an asshole. He disconnects from people, sending a message through each casual encounter that he trusts no one. Mike talks on his cell phone (yes, while driving) about music. He talks with some authority and apparent knowledge of rap and hip hop. One day, a rapper came on the radio. Killian told me that the guy was great, but that he wasn't popular anymore. Killian couldn't remember his name and asked Mike who he was. Mike gave Killian the stink-eye through the rear view, and snapped, "I dunno!" He said it as if he were saying, "why would I know?" and as annoyed as if Killian had asked him where to get some watermelon and fried chicken. The next day, Killian said, "you  like music, right?" Again, defensively, Mike said, "why?" "Well, I like music. It seems like you do too. I listen to and play all kinds of music...the music just has to mean something to me." Mike told Killian that he was a producer. Killian kept working on Mike until he finally got a copy of one of Mike's CDs. The slow thaw of Killian's magic has started...

Tuesday, January 13, 2009

The Tooth Will Out

Youch! Sorry to post such a bad pun, but I'm slightly giddy and puns slip out when I'm gay. Yes, gay. Merry, bright as a daisy, and happy-go-lucky too. The oral surgeon took Killian's molar out. He extracted a half inch bulb of necrotic tumor tissue with the molar too. Prior to removing the molar, he had to pull the top of the tooth out from where it had embedded in his tongue. Killian yelped a bit at this, and I'm sure I reacted to his pain. The surgeon asked me to leave when he did the procedure. I did not resist. Killian was visibly shaking when the dental doc was done. Though he was on Novacaine and not in pain, it was a fairly traumatic event. And though he was blanched, pulsating and shaky, he kept saying, "I feel so good that it's out." Bleeding was minimal.

Friday, January 9, 2009

Happy to see a dentist?

Phil's mom used to say that she would be offended if Phil or Amanda married a dentist. I've observed that she's not alone in her hatred of dentists. Many people have dentistphobia. Killian is fortunate in that he's always had GREAT (not just good) dentists. The hope is that his dentist charm shines on. Killian has a consult set up with an oral surgeon next Tues. We pray, pray, pray this guy yanks this offensive molar out. Killian says that an intense amount of necrotic tissue is in his mouth. It's conceivable that as there is much tissue falling out, perhaps that damn tooth will come with it. Enough already.

Dressing changes for the hole in his cheek are getting more difficult, as the tape has to be peeled off radiated, burned skin. No one has yet invented tape that sticks but doesn't stick. There's a serious need for levitating bandages. Better yet: bandages that absorb and then disintegrate into thin air. 

We'll be in the Catskills this weekend. Killian is really excited about getting into the recording studio with Ralph and friends. That, petting his cat and dog, maybe seeing some friends... that is living.

Tuesday, January 6, 2009

Uptown, Downtown, All Over Town

Killian told me yesterday, when I'd projected he'd be having a crash from the steroid he'd been weaned off any moment, that he was sure the crash would instead be today. Right again he was - the guy knows his body.  He woke up so blue and lethargic, I barely got him out of bed, much less downtown to Beth Israel. He saw Lou Harrison today, who suggested that we really needed to see someone other than him about the hole in Killians' cheek and the tooth that's embedded in his mouth tumor. That tooth has become a big problem. It's also trying to embed itself in his tongue. So, after Killian's treatment we cabbed uptown (thanks to all who donated cab money: it's been a strategic blessing) to Columbia Pres. Dr. G. took a culture from the hole, as well as some blood and examined Killian in preparation for finding an oral surgeon and a surgical consult about that cheek hole. It was a long, inconclusive day. The kind of day that just had to happen and we just have to believe that it will make another day more efficient. 

Not everything about the day was unpleasant or taxing. Killian's steroid-crash blues seemed to vanish like a wind change when he saw "his ladies" (Elena, Christina, Alexa, Diane... at Integrative Therapies). And, though Markus had come to do a museum, or art, or something fun with Killian, I know Killian was pleased that Markus was able to come along for the ride as we were sucked into the vortex of hospital time. Cat waited in the neighborhood of Columbia Pres. - also at the mercy of hospital time - and then she and Markus joined us for a movie back at McDonald House. Pineapple Express. They hated the movie. Good Friends....

Friday, January 2, 2009

New Year's Eve and Day

Breon and Liam came to visit New Year's Eve. It was snowy and lovely as we walked the City. In one month, Liam has changed more than any human I've ever seen change in a month. Even Killian (but maybe that's because you see the people you live with differently). Liam's a real teenager now -- no foolin' around.  I couldn't help but notice that he may have gained the 14 pounds Killian has lost. 

Mark from Candle Cafe brought some New Year's Eve nutrition and party favors. There was a party at the McDonald House. Cally won some Toys R Us gift cards for winning the dance contest, which she clearly put her heart into. Though we Mansfields love a party, we are not known as late night party-goers. Yet again, we did not make it to midnight. 

New Year's day, Killian, Phil and Cally went to Toys R Us (to dispense with aforementioned gift card, which apparently was burning a hole in Cally's pocket) in Times Square. Though they witnessed the residue of the previous-night's world party, it did not hold the same fascination for them as it always did for me when I worked in that area. I loved all the sewers lined with confetti and the QUIET: so unusual for Times Square. They walked about a good part of the day and Killian required only one dose of morphine. Same today. He's doing really well. We expect a quiet weekend, but he's still fragile enough that we'll stay in the City.

He's begun to work on the album again.