Saturday, February 27, 2016

us

Love.

This house is so full of love, and the worst part is that it just keeps spilling out in tears.  Every piece of this home is us - there is no me, there is no him, it is just us, always us. The couch is us, the colors on the walls are us, the shampoo is us, the pictures are us, the drawer knobs are us, the music playing in the background is us - our family, our sanctuary, our place to be together.

But I am not very happy with part of us right now - the part that is supposed to be strong for the part who is sick.  One of us is a quietly hysterical mess, 90% of the time.

It's not an exaggeration. I just keep praying that both of us can be strong.

It's why I can't write much right now. We have a full week of appointments and consultations, but until then, until we know what "us" is facing, everything - even the drawer knobs - hurts.

Thursday, February 25, 2016

what we need

There are several people asking what we need.  We are so grateful for it, but so confused that we don't even know. We need everything and nothing all at once.

Today Yoda dressed as Hermione Granger from Harry Potter. It was "favorite book character" day at school. She was also recognized at a school-wide assembly for being a great reader. Rico was there to see it. Last time we were Skyping him from ICU - but today he was there. We needed that.



Yesterday a photographer asked Kooka to model some dance shots for her. I saw Kooka's first real smile in days when she saw the photos. We needed that too.





Today someone told me that her mother has the same thing Rico's got and has been doing fine for years. We really needed that.

Somebody else told me that they dreamed he was strong and healthy, so that's what they were imagining. We certainly needed that.

Yoda's kindergarten teacher gave her a ride home from school today, which made Yoda feel like the queen of kindergarten. Lord knows she needed that.

I guess that what we really need right now is positivity. We don't have enough answers yet, so it is easy to get dragged into the mire, and attempting to climb out can seem futile when we have no idea what's in store for us.  I know there will be days, weeks, months when we need stuff. Real stuff, hard stuff, and difficult as it is for us, we will likely have to ask for it. But right now, right this minute we just need some happy. It's what we need most of all.

Wednesday, February 24, 2016

tuesday

I remember Rico's first visit to Mayo. I kept thinking that if they told us the worst, I was going to pass out right there. I thought that there was no way I could hold it together.

We meet with the surgeon on Tuesday, and now it seems that he could not possibly tell us anything worse than we've already imagined.

People say it will be better when we have some definitive answers.

I hope so, because crying every five minutes is exhausting.

Tuesday, February 23, 2016

so this is fun

Ladies and gentleman, let's welcome our good friend General Anxiety Disorder to the party.

Because, hey ain't no way to get your house party lit like a portable EKG.

UG.

It's no secret I have general anxiety disorder. Also no secret that I am sort of becoming pretty good at dealing with it. I know when to meditate, know when to exercise, know when to do my 6-4-8 breathing, without medicine - it's been life changing, truly.

But last night was hard.

Hearing Rico's diagnosis, reliving my own five-year-old life when we told Yoda, sharing the news with the big kids - it was just a bit much - but I was pretty sure we had this.

"Not so fast, young lady," says premature ventricular contractions.

PVC is just a freaking fantastic little sidekick when paired with anxiety. PVC means the electrical impulses to my heart do not fire at the same time. My heart stops it's usual rhythm, and then catches up to itself. It feels like is a heart attack - several tiny heart attacks all in a row. I've known about it for a few years - it got me ambulanced out of Disneyworld once.

It isn't dangerous, but in an effort to help me keep it even, I get to wear this little robot device for 48 hours straight. So if you see me looking like hell, with red eyes, unshowered, with a small computer protruding from my bra strap, you should probably just do the right thing for both of us. Avoid eye contact, keep your head down, pretend we never saw each other, and next week we can start all over.

how I'm dealing with life right now



Monday, February 22, 2016

it wasn't it

It wasn't what I'd hoped.

It wasn't what any of us hoped.

And it's not lymphoma either.

It is an intramuscular pleomorphic soft cell sarcoma.

We found out this morning, and told our kids this evening.

Yoda knows that daddy has cancer. She knows that cancer is a tough illness and sometimes it makes you sicker before you get better. She knows that some people talk about cancer like it's scary, but we are not doing that, because daddy has lots of doctors to help him and even more people to love him.

The big kids know what we know. I'm sure they have their own fears, their own thoughts, but for now we just share hugs and tears and encouragement. Because the only remedy for this - for any of this - is to fear less and love more. It's the only way through the storm.

when it rains





When it rains, it pours.

But that doesn't necessarily mean it's a $#!+ storm. Some of the stuff that's cascading down on us is good.

One of Punk's favorite people in the world wrote and directed her first play, and cast him in the lead. Seeing him as Facebook, the slightly arrogant facilitator of group therapy for social media apps, definitely made our week better.
Also, Kooka took it upon herself to make us a meal of Midwest tapas this weekend, and it was glorious.


Per my last post, both Rico and I smell better than we ever have - a mix of citrusy, salty, beachy something.

But perhaps the best part was our Saturday surprise. Punk had recently won both a gold and silver key for two pieces of art his teacher entered into the state scholastic contest. Apparently there were approximately 4,500 entries. About 300 were chosen as gold key winners and selected to hang in the art gallery for a few weeks. Silver key winners were also recognized via screen shots of their work. On Saturday, Punk and I attended a ritzy awards ceremony at the Weissmans Center in Minneapolis.

They had just finished handing out all of the gold keys, and the ceremony was basically over. There was just one speaker left, a woman from the MN College of Art and Design. She stepped to the podium and said she had just one award to give out, that she wanted to recognize one special student.

And you know at this point I'm just like, "Yeah, make it quick sweets, 'cuz I've got two hungry kids, a sick husband and a play to get to tonight." But then she called my kid's name. (Of course my second thought was, "Y'all best stay seated, this is important.")

She proceeds to tell him that he has been chosen to receive a full scholarship to their three-week college summer program. His tuition is free, his food is free, his dorm is free, his verrrrrrry freaking expensive art supplies are free, and the three college credits he gets for going - also free.




To say we were surprised is an understatement. He didn't know, his teachers didn't know, I wasn't even supposed to be there that day, but my workshop had been cancelled, so clearly I didn't know. It was a magnificent surprise for all of us. She came and spoke to him afterward about his art, and told him he was selected because of his techniques, but also because he had created completely original art and characters, which is exactly what he loves to do. He was in shock, I was jumping up and down, his teachers didn't even know what to say. (Full credit to Mrs. h though, who was the one who said, "Hey Punk, we're entering those WW2 characters," and saw his potential.

I'm just going to assume the rest of our week will go just as well. Like today. I'm sure the fact that nobody from Mayo has been able to give us results yet, (even though we knooooooowwww they're finished) is just some kind of anomaly. I'm sure nobody's called because they realized it's nothing. The radiation guys are like, "Whoa, our bad, O'Halloran, smudged his peanut butter fingers on the lens again - you're all good."

I'm sure that's it.



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Sunday, February 21, 2016

what hope looks like (and probably smells like)




When.

It is the word that keeps me going.

Since this journey began nearly six months ago, Rico has always said, "When I am better, when this part is over, we will go back to the ocean. We will just be us."

There are so many reasons that it has to be the ocean. For me, a California kid, it feels like home -safe and warm and rhythmic. The gulf coast is the place where we held hands, rescuing conches and watching dolphins jump in the surf, the place where we rung in our first new year's together, the place where he and Punk first bonded over body surfing, where he and Yoda built bug houses and found huge starfish, where he and Kooka spent hours trying to master tandem "surfing". And of course, it is the last place that he really seemed like himself - where he got excited about fresh oranges, had a smart ass remark for anyone who gave him grief (just ask the lady who stole all of the sunbrellas), where we watched him drop into the drink fifty times trying to master the stand up paddle board.

When.

When he is better we will go to the ocean. We will just hold hands and listen to the waves and everything will feel right again.

Because right now nothing feels right.

But it's funny how full of love this world is. It's funny how some people seem to know just what you need exactly when you need it.

My very best friend all throughout school was Jodi. She's funny, talented and smart, (like she's Hermione and I'm the Ron Weasley - not an exaggeration. Hell I might have even been the house elf, I don't even know. Suffice it to say, she's an all-around good chick). My school year scrapbooks are filled with notes in her familiar loopy handwriting, folded up into tiny origami triangles, boxes or fortune teller shapes.

So when I saw that same handwriting on a package from the Texas coast, I had no doubt who it was from, but I couldn't imagine the why, or how it would make me feel.

It was a box full of beach.

When I opened it, the whole house burst into sunshine, sand and salt and I burst into tears.

Maybe it was the smell of the homemade soaps. Maybe it was the poem her sister Wendy wrote, the starfish pottery ornament J made, the dragonfly charm, the coloring books for Yoda, the dance quote (which is likely how she recalls my sweet dance moves), the little glass beach sandal or all of the handwritten notes explaining the meaning behind each gift. The entire box felt like hope.

It felt like WHEN.

I took the little flip-flop and strung it on a chain. It is glass - negligible grains of sand held together by the test of fire. It is fragile, it is beautiful, and most important, it is real. So for now, I am wearing hope on a string. It is real, it is beautiful and it is always calling out to me . . .

When.
When.
When.




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Friday, February 19, 2016

things I am grateful for

1) Seeing Punk on stage.

2) Watching Kooka dance - boy can she turn.

3) The feel of Yoda's small arms wrapped around my neck.

4) When Rico eats.

5) His hand, warm in mine when he falls asleep.

6) Re-reading Harry Potter.

7) Hot vanilla tea.

8) Dance class.

9) Archie comics (but mostly Betty and Veronica).

10) Love. It seems like the world is full of it.


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Location:things i am grateful for

Wednesday, February 17, 2016

Tuesday, February 16, 2016

well $h!+

A baseball is about 8 centimeters in diameter.

It's the exact same size as what they found in Rico this week.

So we have a few answers, but dammit they were not the ones we wanted.

They'll biopsy it tomorrow, but for now, his physician at Mayo says he's 99.9% certain it's intramuscular lymphoma.

We've tried to keep pretty quiet about it, mostly because we know everyone has stuff in their life, partly because we have no definitive diagnosis, and a tiny bit because we just aren't ready to hear the rest of the world talk to us in that same high pitched voice that the oncology receptionist used when she said, "I am so, so sorry."

We're not ready for sorry.

Monday, February 15, 2016

update

Rico is back at Mayo.
We're grateful the place exists, but still a little frustrated.

Today he is in for a PET scan.  He's having a fair amount of trouble eating, and they suspect he may have some type of blockage, so they are making plans for how to best deal with/diagnose that.

On the upside:

Valentines day was wonderful. Homemade valentines, the wall of love, pizza roses and cupcakes.

Punk's show opens this weekend, and his work will be presented at an art museum in Minneapolis the same day.

Kooka came home with another 4.0, and starts rehearsal on her play this weekend.

And Yoda is special person of the week at her school, which means Scrappy and I get to make a guest appearance in the kindergarten room.

Wednesday, February 10, 2016

false hope

Sometimes nothing feels like something.

At least that's how it was for the past 10 days. There weren't many big changes, but there was something that felt like hope living here.

Now I am not so sure.

The past few days have been trickier than most and we are heading back to Mayo for a PET scan. Radioactive something or other followed by 3 hours of waiting for results you are terrified to hear.

Just breathe.

Tuesday, February 9, 2016

truth

I recorded this conversation when Punk and Kooka were very small. I think about it often. I think it's what love feels like:

He is ankle deep in the river.  She is sitting on the edge – looking at all of the treasures in the water – oyster shells, pink pebbles, tiny minnows. And the conversation goes like this. This is what the truth sounds like:
“It’s OK – just jump in.”
“I am scared.”
“It seems scary but it isn’t.  Not really.”
“But it is a big jump and I don’t know what is in there.”
He comes closer and takes her hands in his.  “Alright K, do you want your life to be an adventure?”
“Yes – I really do.”
“Then you can’t just sit on the cliff.  If you want to have a great adventure you can’t be afraid that you will get muddy, or wet – because you will.  You just have to accept that you are going to get little cuts and scratches – and they hurt a little but it goes away.  You will get grass stains K – and bug bites.  But that is what an adventure is about.  Are you sure you want an adventure?”
“Yes I am sure.”
“Then jump in.”
“Will you jump too?”
“I am already in silly – I am just waiting for you.”
And I hope they feel that way about all adventures – not just the one in the woods

Thursday, February 4, 2016

snow days and stuff

Not much time, but enough for an update:
Two snow days = 3 kids in heaven.
Yoda practiced her bridges and went on a valentine writing binge.
 Kooka spent hours on the piano and making fancy cocoas





















Punk invited Yoda in to his "studio" to draw.



















As for Rico - just yesterday he said he couldn't explain it, but something is different. We don't dare even think about what that means. He is down to only four naps a day. The night sweats are diminished. The fevers are still there. The fatigue persists.

I just go to work and get lost in the dance.


Thanks for the love. We'll keep you posted.


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