Saturday, July 30, 2016

that's my boy

Tonight was Punk's gallery show. He's finished a semester of college in just three weeks, and blessedly, was given a full ride to do so.

And while we're grateful for that, I didn't realize exactly how grateful I would be until we got to the gallery.

Because imagine paying $4,000 and coming to this show to see your daughter's comic of her attempting to kill her own mother.

Or the one about the teenage girl using chopped up body parts to fertilize her rose garden.

What the actual hell???

I mean if you're seriously contemplating poisoning your own mother simply because she asked you to turn off a video game, maybe you should just keep that $#!+ to yourself. Or better yet - see somebody about that.

There were plenty of other lovely things on display, but of course I was partial to one.

Punk's work, was pure Punk. Among his work-in-progress gallery/graded pieces(they weren't allowed to color or erase):a two-page story about a deer dealing with the guilt of being tricked into eating a cheeseburger; a three-pager about a very Rico-esque super-hero who decides that villains have more fun;


and a four page piece that harkened back to his pre-school days.

It was my favorite because it was full of his heart. Between his decade-long obsession with all thing Oz, his desire to stand-up for the underdog, and his struggle to hold onto magic as he grew up. All at once it broke my heart and made me so proud to be his mother - so grateful to share this life with him.
















Forget about the praise he got from his professors. Forget about the way people stop to linger over his work. Forget about the mess that is his dorm room.

"I'm your friend, that's who I am. Come on, I'll walk you home."

That's who my kid is.

That's my favorite part.

hmmm

Well, Rico's knee has been bothering him - more than it should be at this point. Another MRI led to the discovery of a torn meniscus. For somebody like you or me - no big whoo - we go for a day surgery, they sand it off/vacuum it up/whatever. But for Rico it feel like starting over. He is hopeful that the pain and swelling will just go away without surgery - but who knows.

He gets around slowly, but relatively steadily with a walker, but his quadricep refuses to fire which means his right leg can bear weight - but isn't good for much else - like propelling itsself forward - sort of like if you had to balance half of your body on a baseball bat - its better than nothing - but we wouldn't say no to something better.

We just keep calm and carry on for now - it's sort of our motto.

The rest of life has been wonderful and busy, but without much time for updates.

We are still so grateful for all of you. We are so lucky to have such beautiful humans in our lives.

Sunday, July 24, 2016

pictures


Because there is not time for much else.

Six was a good day for Yoda. Birthday lunch at the "fancy" Mexican place - where she loves only the rice and beans.



A homemade cake from Kooka and I.


Two more monarch eggs in the garden that she gets to hatch.

But of course the best part was the "very scary - but in a good way" surprise when the whole cast of Grease surprised her with a birthday serenade, featuring Danny on bended knee with an ice cream cake and Sandy with a hand-painted t-shirt.
video




A visit to Punk, who is being forced to draw still-lifes which goes against everything he stands for.



And despite the fact that he is being coerced into drawing plants, he certainly hasn't been forced to EAT a single one, judging by the photos he sends of his dinners.



Rico drove for the first time in about two months today -one small step for Rico one giant leap for my nerves. I'd feel better if I thought he could actually feel his leg. Back to the doctor tomorrow - we'll see what he thinks.

Wednesday, July 20, 2016

birthdays and barfing dogs

Birthday parties are a big deal at our house.

Huge.

Massive.

We've had four year-olds with pick-axes, a mine full of gems, a mine car cake and a full-scale food fight in the backyard. We've locked everyone's father in handcuffs in the backyard and made the kids hunt for keys in a haystack to rescue them. We've given mystery maps with nothing but coordinates to figure out where the four-day road trip is taking us.

Birthdays are a big deal.

Not that I'm over compensating for my lack of childhood or anything . . .

So when Yoda told me she didn't want a birthday party this year, I was a little crushed.

Maybe a lot.

Partly because I see the anxiety that eats this kid alive on a daily basis, and I didn't want her to miss out on life because of it, and partly because, now what I am supposed to do with the 14 hand whittled wands she was sure we'd need for her Harry Potter soiree when she started planning it in February.

Ug.

After a few late night talks, she finally decided that yes, a birthday party would be ok. But no theme - just classic birthday. And could it please be at Chuck E. Cheese?

Against everything we believe in, against allllllllllllll of our better judgement, we said yes.

Which - next to salvaging that walker from my grandma - was the smartest move we'd made all year.

Allow me to tell you why.

After a 7 am trip to Mayo, (where we spend approximately six hours to find a sock.
A tie-dye sock that takes 2 weighlifters, a hydrolic lift and a Tibetan shamman to get onto Rico's leg - but a sock nonetheless), we made our way back home. We spend a few hours making cupcakes and cards for Yoda's party, getting dinner ready for Rico, and writing notes for rehearsal before we took off for the theater. After a four-hour practice, I bring the girls home and Yoda immediately notices it.

I watch her tiptoe over something in the kitchen, shouting "Scrappy barfed."

Barfed.

What's a little dog barf?

Especially in light of what we've been through lately.

But saying "Scrappy barfed" is like calling the Titanic a canoe.

"Barfed" just doesn't do it justice.

Imagine dinner plates full of chocolate pudding placed in various points around your home. Now imagine that the plates are paper. Now imagine that the pudding is made of freaking acid and has completely dissolved the damn plates, and there is just warm, regurgitated chocolate pudding all over the house. Four plates in the kitchen, one in the foyer, one on the couch, one on the beanbag, three in the living room, one in my bed room, and three all over the bed - where Rico continues to sleep like Goldilocks.

How does that even happen? Who sleeps so hard that an animal can be standing over you disemboweling itself right on the pillow next to you and you don't even flinch?

Needless to say we woke him up to ask, but the barffest just continued.

Yoda stood there with her little mouth squished up, petting him, asking, "Is he going to die?"

The better question would have been, "How is he still alive?"  Because he'd certainly spewed out more than he could possibly hold. Rico, still snuggled under his partially puked on comforter called the vet.




An hour later, Kooka and I have driven 40 miles to the animal ER. (Yes, there is such a thing - no, I never thought I'd be there either).  Turns out Scrappy had ingested copious amounts of chocolate. We know this because the vets kept smelling it and telling us how nice the aroma was.  (Furthermore, they suspect it was intentional poisoning outside, because it was more than any normal person would keep in a house).  After a very close call, and $500, we got to take him home at 3:00 am.

And THAT is why I don't hate Chuck E. Cheese.



Because no matter how terrifying those animatronics are, no matter how much Yoda hated having to don goggles in the ticket tornado - it was still better than 6 kids running around in our chocolate-scented-vomit infused home while our dog convulsed on the doorstep.

Which should probably be their next slogan.





(Just for your peace of mind - the dog is OK. And the cleaners are on their way)









Saturday, July 16, 2016

rico



Quick update from Rico:
I am not a man with great patience. So even though they told me it would take six months to a year for full recovery, I am frustrated that I am not out there riding my bike at five weeks. Recovery is going pretty well other than some issues with edema and chronic pain. All drains have now been removed and the plastic surgeons say that my incision sites are works of art and are very proud of themselves. Though I think they look kind of grotesque, I will admit that the healing is going quite well. I am still using a walker to get around, and getting down the stairs takes more supervision and assitance than most people give a toddler - but we make it work.

Putting  aside  all that yucky stuff, I am such a lucky man to have a wife who is giving me a complete foot treatment right now, even though she says right in the middle of it that she's concerned that one of my "leper toes" might fall off in her hand.  

TMI?  

Maybe. But seriously, without her and all she does for me this would be so much worse. As difficult as this is for the entire family, her commitment to them and to my recovery is incredible. Thank you my love, you are my best.

Friday, July 15, 2016

2016

I'm throwing down my official nomination for President. He's worked hard for my vote, brings people together, has no suspicious deaths linked to him, and isn't an a-hole.



Plus in cool vs. cooler - he's the only one that can give that Canadian Prime minister a run for his money.



Am I wrong?



hi ho hi ho

Back to Rochester we go.

You'd think that a 10 am appointment to have somebody show you how to put on an ace bandage would be no big deal - especially since I am the queen of sprained ankles. (Don't take my word for it, ask Rico - or better yet ask the Mayo doctor who looked at my wrapping job and said it was "awesome - really wonderful - superb actually". Yeah she did. And she didn't even have to demonstrate, I just did it.)

So you'd plan for your 10 am appointment. You'd leave at 8 in the morning, making sure you had a babysitter until 2:00 - because my god, how long can it take to confirm that my 8th grade first aid training still stands? You'd think six hours should be sufficient.

And that friends, is where your whole plan would go to hell.

Because here 10 am, means at least 10:15, which is when they "room" you. At 10:30 the doctor may (or may not) come in. When they do, you realize that while you have a very competent PA, it is not the surgeon you had an appointment with because he is busy, well, surgeoning. And because Rico's case is rare, of course there are things that only said surgeon could address. So after an examination, the PA attempts to call the surgeon, but of course he's repairing the spleen of the Queen of England or something, so he can't get back to us until after surgery, which will be another two hours.

But we can't leave the room to have lunch, because if by chance he's free, (He won't be, this guy never sleeps - it's inhuman how hard he works) we don't want to miss him. So you sit in the exam room, half disrobed, freezing, waiting. About an hour and a half later, PA returns saying the surgeon's not coming after all, but she's sending you for an ultrasound, just to check things out.

It's 1:30. Your ultrasound can't be scheduled until 2:45. And the whole thing starts again. But now your babysitter is gone. (Thank heavens for fairy godfathers who step in at a moments notice.) But P.S. you need to come back to Mayo on Monday because this place is so big that you can't even wheel to the other office before they close.

We really are grateful for the care Rico is getting. It really is the best. But it's very easy to see how people, how whole families can just "become" the disease.

Because cancer is a health suck, and an energy suck, and a happiness suck and a time suck.

Because today it took 8 hours for us to go to Rochester so I could put on Rico's ace bandage and we could pick up a prescription.

Because every minute of every day is spent fighting the good fight.

But he's worth it.
So worth it.

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Sunday, July 10, 2016

college

Today I took my oldest kid to college. Sure it's only for three weeks, but there's something about leaving your kid in his own apartment in the middle of Minneapolis that screams, "Hey mom, you're obsolete."

Still, we're excited for him. He's been drawing obsessively since he was two. A full scholarship, living away from home, being at this school, plus college credits for drawing comics is everything we wished for this kid, well almost.

We're all about the self sufficiency, the chance to explore a new career, time spent focusing on his passions, that's all good stuff. But as we wandered through the college student's exhibits, we found stuff like this:






Allow me to translate the fine print. It says, "Please take a bee and glue it to the blanket."

What?
The?
Hell?

Here's the blanket:






I'm not usually judgy about art. You wanna charge somebody four thousand dollars for a blank canvas? That's cool. You like covering your body in cheese-wiz while interpretive dancing? More power to you. You wanna play the timpani with your butt cheeks? Whatever floats your boat.

But this - this one's weird. I'm not sure I want my nearly independent kid thinking this is a viable option, because there are at least three things wrong with this scenario.

1) Using dead animals as art or decoration is just gross. It is. Yeah I know there are people out there who are gonna point out that skeleton we hang in our yard every Halloween. Yep, we do that, but it's plastic, it's not like I've got my great-great grandpa on display out there. And don't even bother with the whole, "Paper is made of dead trees, so technically all visual art is murderous." Move along Buddha. We get it, but I'm living in the real world here. Paper is not the same as dead bugs - it's not.

And let's be clear, by the time Punk and I showed up to the party, there were no whole bees left - just antennas, wings, stingers, and little unidentifiable bee crunchies. Those adorable pink tweezers she supplied made quick work of the fragile exoskeletons. I guess we should just be grateful her medium wasn't tarantulas. Or kittens.

2) Where do you even get supplies for a project like this? Assuming she didn't go out and kill 500 defenseless honeybees of her own volition, where did they all come from? They don't sell that $#!+ at Michaels. Not that I've been looking, but surely I would've noticed an endcap marked "Entomology" or "Animal Carcases".

All of this for the sake of a blanket that nobody - I repeat - NOBODY - will ever use. You could offer this thing to a shivering Sherpa on Mount Everest and he'd be like, "Yeah, no thanks, I'll just accept the warm embrace of death." If Kooka woke up to this thing covering her, she'd likely burn the house down just to escape the memory. Who the hell is this blanket for?!! And why are there two? This one is covered in houseflies. Is she unveiling a new line at Pottery Barn? Who thought this was a good idea?





3) Third - and this one is by far the most important - she didn't even do the assignment! She just assumed the rest of us would just finish up bedazzling her little quilt with bee parts. Really? Is this good pedagogy? If Punk sets out a piece of tag board and some markers with the directive, "Draw a comic book for me", is that legit? If so, I'll be starting my own gallery comprised of a washing machine and five tubs of dirty clothes; an oven with two twenties on top directing the audience to go purchase and prepare me a dish of chicken enchiladas and raspberry cupcakes; and a bottle of 409 with directions to my house.

Here's hoping Punk sticks to what he's good at - sarcasm and superheroes. Fingers crossed.




Saturday, July 9, 2016

the word

A year ago I signed on to choreograph a summer theater production.

Not just any production - the production of my dreams - the musical that I have been obsessed with for as long as I have been roller skating in my garage - way back when I lived in California and looked like this:






It's Grease.

Even as a six-year old, I would've given up that ice cream lunch box to get to choreograph this show. I mean short of setting me in charge of Joseph with the real-life Donny Osmond, or bringing Michael Jackson back from the dead to do the Wiz, or maybe rewind Olivia Newton John and Gene Kelly to give me a shot at Xanadu, this is the one.
Grease is the word.

When the show was confirmed last year, I was beyond excited.

Of course, then all hell broke loose - but like that's ever stopped us from barreling on against our better judgement. . . .

Anyway, despite running on a steady diet of lunchables and minimal sleep, despite the fact that I know I am not as focused as I want to be,  I'm glad we're there.

Our little theater is a magical place.

Kooka helps me choreograph and teach. She built a staircase with a miter saw today. She's hanging out with college kids - life is good for her.

Yoda is living the dream. She's up until 10 every night, spends most of her free time stalking Danny and Sandy and sometimes coerces them into taking selfies with her.

When she gets bored, she reads the script or wanders through the aisles singing showtunes to herself. When she gets really bored, she comes to tell me who in the cast could be doing a better job. (Oh yes she does).

Even Punk, and Rico, and Punk's girlfriend Zoe will be making cameos. With Rico still in bed, Punk headed off to a college art program and Zoe moving to another town (we're already crying about that part), none of them could actually participate in the show. However, the three of them snuggled up in our bed today and recorded voice-overs for the drive-in scene, where they will play, the hero, the werewolf, Sheila, and the mad scientist.

Spending our nights with such beautiful, talented people, makes our life a whole lot sweeter. I'm pretty much over the lunchables though.

one month

It's been one month tomorrow since the surgery.

There are good things happening and completely disheartening things happening.

The pulmonologist called him a rock star. He said that his lungs are cleared up and nobody knows why - but that he no longer classifies as someone who has pulmonary hypertention.


But "Not so fast," says the oncologist. Although the surgeon says the margins were clear, and the guy who put the Dalai Lama back together says the repair work looks beautiful, the oncologist - who is the only dude we really care about at this point says,


He says things like:
 "People think we know, but we don't really know anything."
"When it comes back."
"You technically could be a candidate for chemo if you'd like, but the risk of infection, heart damage and serious side effects is 4-9 percent, which completely negates the 3-7 percent chance that it would do you any good at all."

Thanks oncology. We get it - it's your job - but throw us a bone.

We do however have the good fortune of living across the street from a pair of doctors. Among the plethora of things they have done for us including feeding our kids, driving our kids, taking care of the dog, making deliveries to Mayo, perhaps the single most important thing they do is ask us about all of our visits, focus on the positive aspects and say, "That sounds like good news."

Which is all we need to hear.

We have google - we know the odds, we can read between the lines - they either got it, or they didn't. Just don't keep kicking us in the face with the "what if's?"

Because quite frankly, his leg could be on damn fire, and if Dr. J across the street looks at it and says, "Heat therapy is really good for circulation" - we're gonna take that information and and run with it.

Well - walk with it.

Well - maybe like shuffle with it.

Well - probably more like grab the walker and hope to heaven nobody left any legos on the floor and maybe get to the front porch with it.



Wednesday, July 6, 2016

the post I almost didn't write

Someone said to me not too long ago, "Your blog is unfair. It makes everything about cancer seem fun and lighthearted, and it's not."

True dat.
It's not.

My deepest apologies if it comes off like that.  But we spend enough time wallowing in the crap, and most times there is no need to rehash it here.

So I'll be clear - this isn't fun.

Yesterday was especially "not fun". Like the kind of day that makes you doubt your existence "not fun". The kind of "not fun" where you realize it's been 9 months since you spoke to another adult about anything but recovery times and diagnosis and medicine dosages. The sort of "not fun" that makes you realize your five year old has spent more of this summer in medical centers than she has outside.  The kind of "not fun" that leaves you wondering how it can be that you're older kids are asleep before you even get home. The type of "not fun" that leaves us staring off into space because right now the words that would come out are things we've heard a hundred times or thing we don't want to say.

Nothing about the power being out for 5 hours and the oxygen machine going off was "lighthearted". Nothing about a three hour commute every other day is "fun".
Nothing about the alarm being set every two hours for meds is "exciting".
Nothing about not sleeping - because quite frankly, there ain't time -  is an "adventure."

It's just life.
It just "is".

So we have to make it OK.

Between the pills and the pain, and the boredom and the frustration, we do what we can.

We do fireworks in the driveway, because we can't navigate a walker across any other terrain.

 

We let Rico use an entire can of whipped cream however he damn well pleases, because hey - at least his arms still work properly.

 

We watch eggs turn into caterpillars, turn into chrysalises, turn into monarchs, because clearly we'll be here when they hatch.



















We don't run dance camp, but we let the bendy cousins show off their skills in the basement, and the less bendy ones give it a shot.

Though they have their own mad skills:
We create stuff, even in the dark - because, well - we've gotten quite used to that.
















We hang out with pirates, and stragglers, and friends real and imaginary - because we'll soak up all of the love we can get.
















We learn to blow bubbles and tie our shoes and count pills. We wish upon stars, and wish for better days, for new adventures, new dreams, new things to think about.


We live, because this life is what we make it.
But no, it is not "fun" it is not what we wished for, not what we'd wish on anybody.
It just "is"..
And we just keep on.



Saturday, July 2, 2016

home




It's like dumb and dumber go to med school.

How much Lyrica are you supposed to take?
One.
But there are two in a pouch.
Oh, then two.
Then what is this other stuff next to it?
What color is it?
Purple.
I don't take anything purple.
Are you sure? Should you be taking the purple stuff?
I don't even know what that is - why do we have that?

Do we put those Ted hose on now?
No, no I think they come off. No, wait maybe on.

Don't even ask about assembling the wheelchair.

But as predicted - we are complete pros with Netflix



- Posted using BlogPress from my iPad