Dusan was right. And I'm fresh out of pudding.

One for me, and one for my homies.

Picture it: Sarasota, summer 1987.  Our hair is huge, our income is 100% discretionary, and our only rule besides "stick together" is "don't get caught."  Elizabeth's parents foolishly decide to head to Europe for  a few weeks, leaving 16 year-old her - and by extension, Hope and me - at home alone.  Those of you who secretly call John Hughes your personal lord and savior know what happens next, right?  Elizabeth promptly installs Hope in the spare bedroom; I make frequent guest appearances; and most of our classmates end up at Elizabeth's house for a classy soirée.  You know how I know it was classy?  Because I was the one chugging the cold duck straight from the bottle (and there's a reason you only ever do that once).


Anyway, the good times are rolling, the hot tub is turning weird colors, and it looks like someone is heating up a carton of pour-a-quiche in the microwave (as one does). Elizabeth, Hope, and I are debating exactly how to deal with the police when they inevitably arrive (and they do), when Dusan wanders over.


Dusan is of Korean descent, incredibly smart, a musical genius, rather tall, not someone we usually run with, and ALLEGEDLY a fan of the Mary Jane.  He is normally mellow, but tonight - daaaaamn.  His eyes are doing that pinwheel-y thing that Bugs Bunny's eyes do when he takes one to the melon, thanks to Daffy's shenanigans.

Not actually Dusan.

Dusan oozes coolness - and just a tiny bit of condescension - as he leans in to the three of us and says, "You know, guys... I never said it was gonna be easy."  He waits a beat, then asks us to open his pudding cup (in all fairness, they're tricky under the most lucid of circumstances).  We oblige, and he ambles off, mumbling "This is the BEST pudding..."  


Hope, Elizabeth, and I are stunned into silence.  What the hell is he talking about?  When did he tell us this?  Is he even more ALLEGEDLY stoned than we thought?  Or is he a prophet?  And where did he get that pudding?  Is there any more? And really, what ARE we going to do when the cops show up?

Why yes,  as a matter of fact, I DO own the road.

Fast forward to fall 2011, and it looks like our pal was a
prophet.  It is not easy - life in general, yes, but more specifically, living with cancer in our family.  And that makes ME not easy to live with, and that's why I have been off the radar for a while.  For the last several weeks there has literally been nothing that anyone could say that was the right thing.   And when I am like that, I cannot stand to think that I am going to bite off some dear friend's head for saying the wrong thing, so I have just made myself scarce.

I know what you're thinking.  "*I* would have known what to say.  You could have let me know what was going on."  No.  No, I couldn't.   I assure you, no matter what you were going to say, it was going to be the wrong thing.  Ask me how Nathan's doing, and you're an insensitive jerk for not allowing me to have a life outside my son with cancer.  Ask me about anything else, and you are an insensitive jerk for not asking me about my son with cancer.  Tell me how strong I am and how you can't imagine how I manage, and you are an insensitive jerk for not realizing that I am not managing, that I am a hot under-medicated mess.  Tell me that God never gives us more than we can handle, and you are an insensitive jerk with shitty glib theology.  Tell me how lucky I am that Nathan is doing so well and how so many parents don't get the kind of good news we have gotten, and you are an insensitive jerk for turning suffering into a competition.  Tell me how awful it must be to have a kid with cancer, and you are an insensitive jerk for ignoring all those parents who don't get the kind of good news we've gotten.  Tell me that it could be worse, and you are an insensitive jerk for minimizing the pain and horror and grief and anxiety and fear, both high- and low-grade, that we have lived with since he was diagnosed in March 2006. And God and John Hughes help you should you decide to give me advice, because that will be a bridge way the hell too far.

In short, you cannot win.  Because I just want this to be over.  I do not want to be strengthened by my struggles or admired for my positive attitude.  I do not want to be an inspiration to anyone anywhere. I don't want to be "that family" any more.  I am not a good sport.  I am a tired, ungrateful wretch, and I want my life back.

Would be a one-of-a-kind tramp stamp.

Which is right up there with "oompa-loompa" and "date with the guy who played Tuco on Breaking Bad" (don't judge) on the List of Things I Deserve But Am Unlikely To Receive Sometime Soon.  My time in Camp Suck-It-Up is half over, sort of.  Nathan will finish chemo in July 2012 (screw the Mayans), and we will for sure pack up and vacate the cabin ASAP, but I suspect that no one checks out without commemorative camper tattoos.  


Nathan will continue to have MRIs every 6 months for the rest of his life, and we will continue to hold our breath and wait for the doctor's follow-up call.  And the odds are that he'll have further NF-related complications at some point, and that we will be shattered all over again.

So, why did I climb out of the hole and back in your face?  Because I taught my 5th graders last week that we have to be willing to unpack some yucky places in ourselves in order to connect with the characters in the books we read as well as the ones we encounter in real life.  Because when I mentioned that I could think of one of those yucky places right off the bat, a very wise 10 year-old looked dead at me and said, "Maybe you should write about it."  And because I may be a lot of things, but a bullshitter is not one of them, in the classroom or anywhere else. 

So, no. I am not getting what I want.  Probably not ever.  But I am learning to live honestly with what I have - ungraciously, kicking and screaming, pudding-free, and with my meds clutched in my hot sweaty hand.  Bless your heart for putting up with me.

Love you -

MA

Are we there yet?

I was diagnosed with ADD about 12 years ago.  Not ADHD, mind you.  There is no hyperactivity component whatsoever, just a attention system that is out of whack.  And I think this is why I am an incredibly useful person in an acute crisis situation. Funerals are my specialty.  I cowboy up, I do what has to be done, I do not cry, I am goal-oriented - I dare say I am Cylon-esque in my focus.  I can be Wonder Woman successfully for about a month, and then I am ready for something else. Long haul?  Yeah, not so much.

Guess what?  A month of this crap was up a month ago.  I'm not so useful anymore.  I'm damn sure not as entertaining.  I am bitter and angry and tired and hateful and SO ready for this to be over.  If self-pity were an Olympic sport, I could medal for the USA.  I am in control of absolutely nothing, and I hate that.  And if one more person tells me that God only sends us what we can handle and that He knows what big shoulders I have, I am going to point out in no uncertain terms that She has me confused with someone else - I am the one with the big ASS.

Nathan is struggling.  Here's what I unloaded on Hope via email yesterday:

N had a horrible day at chemo yesterday - Dan called me at 10:30, and they were both wrecks.  First off, N had lost just over 3 pounds in a week.  Then, his port was blocked, so they had to stick his finger for the blood draw, and he was dehydrated, so that was awful.  Then he showed them the enormous canker sore inside his mouth, and they scraped it for a tissue sample to make sure it's not the cold sore type of herpes - TWICE.  Then while they did the physical exam, they noticed that not only does his left eyelid not close all the way anymore due to the tumor, his eyes were pink and gunky, so they diagnosed pinkeye.  He had cried three times by the time Dan called me. 

As it turns out, it's not herpes, the pinkeye antibiotic is working, and N is learning to drink water like I drink Diet Coke.

It just sucks right now, and I HATE telling you all that because you all have been some every kind of wonderful, and we get tangible and intangible reminders of your love and concern and support every week, and I need to focus on all the good that has come out of this.  It's just that lately, I have not been able to do that.  I am considering putting up posters around town that say "Have you seen my sh*t?  'Cause I have lost it.  Call 1-800-THIS-SUX."

This poster is pretty awesome, too.

I think I need to have dinner with some friends.  Maybe Ben and Jerry or Big Olaf.

Man down. Send help.

Nathan is losing his hair.

You know how something can be right in front of your face, and you still don't see it?  I have been not seeing this development for a couple of weeks, and yesterday, I couldn't not-see it anymore.  More to the point, neither could Nathan.

It was a rough, rough, rough, rough night.

For a chemo patient, hair loss is an unmistakable sign of your other-ness.  You're not like everyone else who is healthy.  You're different, very obviously so.  And for a chemo patient in middle school, being different can be a fate worse than death.  This is what is weighing most heavily on our boy's mind, the fear that he will be a target for mean kids.

As a teacher, I know that some of those mean kids also feel different or ugly or left out or just plain wrong.  They try to cope by drawing attention to others whose brokenness is more visible.  "If everyone is looking at that kid," they figure, "they're not looking at me and at everything that is wrong with me."  And as a teacher, I feel for them.  Middle school sucks, their brains are not fully formed, they are trapped in a hurricane of hormones, their families don't understand them, yadda yadda yadda.

BUT.

As a mom, if some mean kids picks on MY kid?  I hope God has mercy on them, because I sure as hell won't.

So, this is one of the hard days.  Rationally, I know that the staff at Nathan's school is going to do everything possible to ease his way during this part of the journey.  I know that he has good friends who are his friends, no matter what.  I  know that, given the chance, most kids will rise to the occasion and do the right thing and treat his balding melon as no big deal.  But I am still scared, and so is Nathan.  So,  I'm doubling up on my prayers and asking Jon Jetton to watch over my boy - he walked this walk, and many of you walked it with him.  I'm asking for the rough places to be made plain.

And if they're not, I may be back to ask for bail money.