Wednesday, June 29, 2016

a good day

Yesterday was a long day.
It started at 7:30 and continued through a 10:30 pm grocery shopping experience and culminated with both girls, the dog and myself huddled in bed with insomnia until 12:30.

But that's OK - because today was fairly wonderful.

Rico gets to come home tomorrow. He gets a bit more independent each day.
Yoda took a trip to the zoo with one of her kindergarten friends - the first one she's seen all summer - and pet a tarantula.

Punk got a shout out from his boss at work for being the one counselor who keeps the kids having fun even when they have to do boring things like walk through the hall.
Kooka's ever-so-adorable boyfriend made her a belated birthday picnic lunch at the arb and gave her a gift of photos he's collected since they first met in 4th grade. (Yoda's future boyfriends - take note. Actually - Punk take note. This kid's setting the bar pretty high).
Scrappy got a haircut - and a chance to see Rico for the first time in over three weeks. I'm not sure who was more excited.





But there was just one part that was so perfect that Rico and I just sat in his room, with tears on our cheeks and no words between us.

I came home last night to a large wrapped gift. There was a card on top and it said, "From the kids to the adults - open together."



So today, I toted over to Rico's place so we could check it out.
The backstory on this gift is that whenever anyone in our family leaves home for an extended period of time, they take a little tin coffee can called "the box of love" with them. It has notes from our family, little trinkets from home - stuff like that.

The card attached to this big box said, "We know our lives have been so crazy lately, but we love you both so much, and we can't believe that even with all we're going through you still make sure we have everything we need, and are always here for us. You're the best - Yoda, Kooka, and Punk."

Basically we started crying right then, and said in tandem, "OMG, who cares what's in the box, that was the best present of all."

But it got better.


Inside were notes, letters, trinkets, things the kids had made to help us pass the time during doctor appointments. It was even more love.


More love was in that box.

Surely there must be a shortage of it somewhere, because it seems like we've been getting more than our fair share of it lately.

moving along

A full day at Mayo yesterday - three surgeons, a trip to prosthetics and a pathology report.

The sarcoma was 9 cm by 5 cm by 5 cm. The margins were narrow, but clear.

All surgeons agreed that he could ditch the immobilizer, which didn't seem to be helping much anyway, and instead sent him to have a specialty brace made.

With this new development, he'll get to leave the care center and come home - hopefully tomorrow.

There are pros and cons to this.

Pro - He's home.
Con - We have stairs. Not just upstairs downstairs, but "oh you'd like to actually get into the house?" stairs.

Pro - Family dinners.
Con - He's the better cook.

Pro - Night time snuggles.
Con - We are both so terrified that somebody might actually touch that leg, that we may well need Trump construction to come in and build some sort of impenetrable wall right down the middle. So, yeah, no snuggles, but at least we can binge-watch Netflix together.

Saturday, June 25, 2016

irony

The irony of last summer's events versus June 2016 have not escaped me.

For those who don't know, I spent the beginning of last summer battling an adrenaline depletion caused by my own anxiety, which until May of last year, I thought was completely normal.

It's not.
I mean, it was for me, but it's not how other people function.
Thank God, because it always felt like this:



Even when I acted like this:



But, I digress.
I spent last June learning to meditate, going for long walks, cutting out caffeine, trying yoga, limiting screen time for all of us, trying more organic foods, playing the ukulele, and reminding my brain that worrying wouldn't solve anything, that the world is a good place, that not every bruise was a blood clot, not every fever was cancer.

Took a good four months, but eventually I got the hang of it.

Yeah, this is the $#!+ that Alanis Morissette writes songs about - don't you think?

Oh - that fever was cancer? My bad.
And that bruise is a clot? Well, I'll be damned.
Long walks - we don't get farther than the nurses station.
Limiting screen time? Yoda spent so much time on my phone she figured out how to post her own Instagram, edit videos, and navigate our car to Rochester and back.

On the flip side, the practice did some good, the world is still a good place, and I don't want to walk anywhere without Rico anyway, so I guess we'll be ok.

Friday, June 24, 2016

today

After an emergency trip to the ER - which sounds redundant, but seeing as we asked three different people if we should go get it checked out, all of whom said he was safe for the moment, but that we should double check with the surgeon,  and since the surgeon couldn't get back to us until everything else was closed -we're not sure what to call it. He constituted it as an emergency - we certainly assumed it was one, but maybe not - nobody is really sure anyway.

After an ultrasound and a super strength dilaudid, the ER department ascertained that Rico does not likely have a clot. There is a possibility of infection, but right now it seems that what Rico has is a "seroma".

Don't google it.
Seriously.
Don't.
Since you're probably going to now, at least make sure your image search is off.

Wikepedia says a seroma is a pocket of clear, serous fluid that can develop in the body after surgery. That's all you need to know - unless you're weird like that - then go ahead . . . .

And if you like that kind of stuff - here's Yoda's allergic reaction to a baby mosquito:


And my possibly broken hand from clapping too hard:

Both of which are completely adorable compared to googling "seroma."
You've been warned.



Thursday, June 23, 2016

the adventure continues

A weirdly growing lump.

Fever.

Sweats.

Probably a trip back to Mayo.

Wish us luck.

Wednesday, June 22, 2016

uno, dos, tres




The three musketeers.
Three amigos.
Three stooges.

Whatever it is we call these guys, Rico is at his best when they are together. Frank, Eric and Rico have been hanging out since the 7th grade. They usually spend a summer vacation together and this year, summer vacation is at the nursing home.



They've been here cooking, giving our kids rides, helping him get out of bed and into his wheelchair. They've adjusted his leg brace, hunted down nurses, kept him company through hours of laying in a hospital bed.



We should all be this lucky.







the worst thing




I thought the worst thing had already happened. But I was wrong.

I thought maybe it was the radiation burns, or the surgery, or the second surgery, or having to move into a nursing home. But it wasn't any of those things. As a matter of fact, the worst thing didn't even happen to Rico. It didn't even happen to me. It happened to Gladys.

The day after Rico moved into the care center for rehab, two ladies were admitted for long term care - this was their new home.

I ran into the first one as I was bringing sandwiches in for a family dinner. She'd wheeled her way out to atrium all alone. "Can you help me find my car?" she asked.
I couldn't.
Not that it mattered. Before I could answer, a PCA came to swoop her back to her room. "I need to get to my car," she shouted. "I need to go home."
"No," the PCA reminded her, "you live here now."
"No, please no."
"Yes. Yes, you do."
That was not the worst thing.

I continued toward Rico's wing, where we were sitting down to a family dinner. He was surrounded by love - three kids, his wife, his two childhood BFF's who'd come from Florida and New York, and Punk's girlfriend. He had home cooked food, good conversation, and most important, he was weaned enough from medication that he could enjoy it. That was not the worst thing either - it was probably the best.

The worst part came as I was taking things back to the car.

A woman we'll call Gladys, was sitting in her wheelchair next to the nurses station. "I need help. Somebody help me! Please!" Her voice was frail, but she could still muster a good shout. It was late, and the nurses were making rounds with medication. There was no one to hear her.
"Can I help you?" I asked.
"I need the boss of this place, are you the boss?"
"No, I don't even work here, but I'll help you if I can. What do you need."
"I need to find the person in charge here, because I need to find my way h-h-home."
I knew where we were headed with this, so I just knelt next to her. She took my hand and I asked her, "Where is home?"
Tears fell from her eyes, she looked into mine and said, "I don't know."
We were quiet for a minute before she tugged on my hand and said, "I know people think I'm crazy, but I'm not. I just want to go home. I don't belong here. Do you belong here?"
"No. No I don't."

The nurse came by and offered to wheel her to the TV, but it didn't stop the tears. The nurse explained that her daughters dropped her off that morning that she was going to stay there a while. She told me where her room was and I took her in. Gladys showed me pictures of her family we talked for a while. I didn't want to leave her, she didn't want to let go of my hand. But eventually we said goodbye.

When I left for the night, Gladys was back at the nurses station, just sitting. She was so sad, so lost so scared. It was the worst thing.

Seeing someone's heart break is the worst thing.
The worst.


- Posted using BlogPress from my iPad

Saturday, June 18, 2016

different

Everyone keeps telling us how great it must be to be on "this side of the surgery."

It's not.
Not really.
"Great" isn't a word I'd use to describe it.

I might use the word "relieved" - in hearing the best sarcoma surgeon in the world say, "clear margins."
But there is the terror of hearing, "well, what we can see."

I might use the phrase "less anxious" - about the surgical process now that it's over, but there is always concern about infection, the drains, and rehabilitation.

I could say it was a "tender" moment to tell our kids that Rico was awake and asking about them. But there is some sadness in watching Yoda curl up in wheelchairs to pass the time, or to have her spending sweet summer days in the car, or ordering from the hospital cafeteria. It's her new normal, and will be for a while.



But by far, the least "great" part is leaving Mayo.
Rico said it himself, "Mayo is the Marriott of hospitals. Nothing else really compares."

Least of all a nursing home.

Maybe it's because it's the weekend. Maybe it's because we were planning on something else and were told last minute they didn't take Mayo patients, maybe it's because Mayo spoiled us for everything else - the people, the facilities, the attention to detail, it's as perfect as a hospital stay can be. Needless to say, a nursing facility is well, different.

No need to go into too many details, but I will say that the one nurse who took it upon herself to "wean Rico from his pain meds" two days after his last surgery, and mere hours after his transport from Mayo, without Rico's consent OR a doctor's order, had Rico going full New York on her. As you can imagine, he got his medication.

But he also got a personal delivery of fresh cinnamon rolls and garlic rolls from Crack of Dawn bakery - because those guys are the best. Nobody, tried to wean him from those - even though they're better than oxycodone.




Thursday, June 16, 2016

magic


Ever since my kids could talk they have asked, "Is magic real?"
I always say yes.
Because it is true.
This is how I know:



The week has been a blur. Between me teaching camp, running to Mayo and working on choreography for a summer show, Punk is also working as a counselor for two camps - theater and YMCA, Kooka is likewise working at theater camp and spending her nights at rehearsals for a summer production of Grease. Yoda has spent her first week as a day-camper and will be making her theatrical debut as a statue of Aphrodite - Greek Goddess of Beauty, as well as a short cameo in the River of Death.


Her summer reading log actually says "Methodist Hospital cafeteria menu - 15 minutes."  Reading in the car makes her sick, and it was either the room service menu or a three year old copy of Reader's Digest. She went with the food.

Last night we got home around 12:30 am.

And poof - there was magically a fresh, homemade strawberry pie in my refrigerator. I did not put it there. My kids did not put it there. Nobody in our house made that pie. We weren't even in the house when it happened.

Today - I left for three hours and abracadabra - when I came back there was pasta, homemade sauce, french bread and parmesan on my counter - and it was still warm!

While I was with Rico for surgery on Tuesday, all three of my kids got home from camp in a torrential rainstorm without getting wet.

FREAKING MAGIC!

The dog's been fed. The computer's been fixed. My kid was asleep in her own bed when I came home. There is ice cream in my fridge. Our peanut butter keeps refilling like the hanukkah lamp. My kitchen is clean. There was a coupon for free pizza in my mailbox. Rico laughed.



It's just magic.
We can't see the love, but it's there, and it makes the impossible happen.
So yeah - magic is real. And we're so lucky to live around so many magical people.

Rico's feeling a little bit of magic today too. There's been some progress. Most of the IV's are out - so is the pain pump - so is the antibiotic drip. We're glad he's unhooked, it means he'll get to leave his unit.

That's all good.
But then the nurses start asking questions:

"Do you have parents living nearby."
"Define 'living'?"

"Nearby siblings?"
"No."

"Anyone that can help you with 24-hour nursing care?"
"What exactly does that entail?"

"Well, lifting him out bed without allowing him to bend at the waist, rotating him every three hours, taking care of stitches, things like that."
"I can barely lift myself out of bed these days. I'm actually supposed to completely lift him up - not just sit him up or help carry him, but do it like I'm at a fifth grade sleep over - like 'light as a feather stiff as a board'? How is that even possible? It took five of us to do it the other day."
"Well you might need a helper."
"I have a five-year-old and a pomapoo with me at all times. I'm doubting their credentials. And as far as rotating - if we accidentally kick each other in our sleep does that count?  Plus I don't even know what taking care of stitches means - like didn't somebody already take care of that? What more could be left to do? I'm slightly terrified that the job isn't quite finished - is that really a home-based project?"

Nurses - much like bees and dogs, can smell fear. In light of this, we decide that a short term care unit would be best for the time being. She asks how we would like to transport him. Again, this seems outside of my current skill set. He's only allowed a 40° flex at the waist  - so even if I wanted to, the only way I could transport him is to roll down the passenger side window, tie a red flag to his foot and load him in through the back like a two by four from Home Depot. Given a choice between the two, we decide that an ambulance is the best course of action.

So tomorrow he will move - not sure exactly when - but at least we know how. And "poof" just like magic - there will be physical therapists, and hugs, and comfy blankets and all sorts of good things surrounding him. And hopefully the hallways will be a little shorter than Mayo's, so Yoda doesn't have to bring her own set of wheels to walk through them.

Tuesday, June 14, 2016

Looking for good



You can see the dejection in his eyes. The cyclical fevers are still there, so are the night sweats. Three to six surgeons enter his room each day and we always ask. It's the big question - the only question - yet a thousand questions.

Did we get this thing? Is it possible we never even found the problem? Is it possible that we just stumbled across this cancer in our search for a needle in a haystack? Is the needle still there? Is it possible that we are in the exact same position we were in November, but now we've got 8-inch zipper stitches in his stomach and a hole in his leg?

All three surgeons give us the verbal equivalent of a collective shoulder shrug. They don't say no - but they don't say yes. They say, "Let's just keep watching it."

When we heard the phrase "clear margins" it wasn't like we were ready to believe the nightmare we'd been living this past year was over, but I think we allowed ourselves the possibility of imagining that we'd wake up from it. Now It feels like we're back in limbo.

But still, we look for the good in the day.

Anesthesia Erik popped in for a visit - just because he was wondering if we were ok.

Nurse Karl was there too. Though he wasn't there in official capacity. Karl and I go way way back to Bible camp counselor days. He kept me company for two hours, where our constant chatter helped Rico maintain a blissful sleep.

Rico got to sit on the edge of the bed today. It took four of us to help him, but he did it.

Lori and Chris came over to our house, made dinner, sat down to the table with our kids, and made sure there were leftovers when I got home.

The neighbors made dinner last night, (and the night before), hosted sleepovers, made us fresh chocolate chip cookies, drove Punk to work, and fixed Rico's computer.

Kooka cleaned our kitchen spotlessly.

The tornado warnings stopped so I could make it home in peace. Some things are still good.





thanks

He laughs when I read him the last blog post - smiles when I read him your notes. There are pieces of him coming back.

There is a clot in his drain. PT stops by later today. He's signed himself up for every possible clinical study offered so he can help other people find answers . He always lets the student nurses do the work so they can learn - sometimes that means the procedure is slower, but he's not going anywhere soon.

He's smiling, and man do I love that smile.

We are so grateful to all of you who keep stepping in to help our family so I can be here with him. Thanks.




- Posted using BlogPress from my iPad

Monday, June 13, 2016

the weird

He knows the drugs are messing with him.

All told he's been under hard anesthesia for 10 of the past 70 hours. Throw in a pain pump and epidural and well, we can't blame him for falling asleep midsentence.

Our conversations last about five seconds, are mostly one sided, and go like this:
"I love you."
Snore.
"Are you still here?"
Snore.
"I would talk to you more, but my thoughts are too long and you are too slow."
Snore.
"I know I'm making no sense."
Snore.
"Hey are you ready? Let's leave."
Snore.
"Can I eat? I can? Ok, I want pasta, some pears and a big big BIG cup of - get me the f#*! out of here."
Snore.

But even though I am "slow", Rico still has his moments of brilliance:

"You know how people hire like Batman and princesses for kids parties? I was thinking that some kids aren't into that stuff, some kids are into business."

"They are? You know kids like that?"

"Yeah. I'm gonna have a meeting with this guy and we're gonna start a company and I'm gonna go to parties as 'Business Man!'"

"Wow that's a pretty narrow niche market."

"No, lots of kids like business more than superheroes. And we probably won't hire out on Sundays."

"Good idea."



I'm not sure this crazy room helps.

The bed is one of those big-old traction beds with a full frame and a trapeze hanging from one end. There's always something beeping. The building outside his window is made of mirrors, so you're never really sure where the sun is. The toilet looks like this:






It feels like this:






Oh, and if you're like me and always try to flush hospital toilets with your knee or foot, you have to do this:






Even through his psychedelic journey, he knows you guys are here. Between sleeps he says, "You are a very lucky person. We are very lucky. Because so many people love us. We are so lucky."

He is right. The only thing that would make us luckier is if one of you could throw your third grader a "tax audit birthday party" next Saturday - we know a guy . . .

today

At least we were warned.
The first thing I saw from Rico this morning was a text: call me as soon as you can.

I did, but he was tired, and I wanted to make sure I got the whole scoop, so I called the nurse. His fevers were spiking to 103, they needed to operate on him as soon as possible to clean up a hematoma however, they couldn't operate until they gave him a blood transfusion. After doing all of the math, the nurse said the earliest they could operate would be 4pm.

Rico and I made the decision for me to stay with the kids through lunch. That way I could get a start on theater camp this week, make sure all three kids were set for tonight, and sneak in a birthday lunch with Punk (and his delightful girlfriend who happens to share his birthday).































We were just finishing cake when I get a call from Mayo. It's my contact nurse, Lori.

"I'm so sorry," she says, "I never thought I'd be calling you. . ."

No. No. No. No.
Not now.
Not ever.
But especially not now.

". . . again. I thought he was done the first time. It's so crazy he's back in here."

Lori, you're great, but let's work on your delivery.

Turns out, his transfusion took less time than they thought, and they grabbed an O.R. as soon as it was available. It also seems that it was not a hematoma after all. It was a build up of fluid from the operation. The surgeon tells me that's good. I don't know why, but he WAS just working on the Dahli Lama or the Pope or Khloe Kardashian or whatever the other day, so I assume he knows his stuff.

I make sure the kids are set - we really do have incredible neighbors - and jump in the car. He was just rolling into the room. He is so foggy, so disoriented, but I fed him some fresh ravioli, and he was excited to find Shark Tank on TV - some things never change.












- Posted using BlogPress from my iPad



wth

Let's just get this out of the way:
Orlando.
What the actual hell?

How can somebody hate humanity that much?

It's particularly difficult for me to understand right now, seeing as how it's taken a Kentucky baptist, a Mexican immigrant, two Muslims, an Asian mountain climber, a Heterosexual Canadian, a Lutheran pastor's kid, and a lesbian from Ely all working together in one room to save Rico's life.

Forget "live and let live" - these guys are "live and help live" no matter who you are, where you're from, what you've done (stop me before I write an entire Backstreet Boys song here).

How can some people see so much to destroy, while others see so much worth saving?

I don't get it. And unfortunately, my favorite discussion partner is in a drug induced stupor from his second (surprise!) surgery.

Everybody deserves love like this guy has surrounding him. Thank you for sharing yours with us.








not great

Things could be better.

A hemotoma in his surgical site - which requires another surgery.

Fever to 103.

Hemoglobin is low - which requires a blood transfusion.

And apparently his computer which works remotely so somebody can take care of his work stuff while he's away, has completely shut down.

I don't remember ever being this tired. He probably doesn't either.

Happy birthday Punk.


Sunday, June 12, 2016

lucid


People have been asking lately, "Is he lucid?"

The answer isn't easy.

The phentanol plays tricks on his brain. Sometimes he sees things, sometimes he hears things, sometimes he thinks it's time to leave. Like when he looked at me today and said, "Should we go now?"

But then he looks me in the eye and says, "Yeah, I know how messed up that is. I also thought it was tomorrow already, and could swear there was somebody in my room earlier who couldn't possibly be here."

So, he's not always lucid, but he knows he isn't, and I guess that means he is.
Basically he can fall asleep mid-sentence, fall into a dream instantly and when he wakes up, it's hard for him to keep track of awake vs asleep.

If I'm being totally honest - it's getting hard for me too.



Yoda and I drove to Rochester today. She made him card, had lunch in his room, brought him a painting from our neighbor.

He told me to take a picture of them for the blog. I'm not one for pointing a camera at somebody who doesn't feel well, but he said I should take one, so I did.




He still has a fever - 102 degrees. No less than five medical professionals have told us this is common after surgery, but we're leery. We've had to advocate for him all year, push for tests, ask for scans. It was me who suggested he had congestive heart failure on his fifth trip to Mayo (the one where they realized I was right and ambulanced him out of the doctor's office). We trust the doctors, but they are human, they have several patients. I have one. This one patient is my life.




Saturday, June 11, 2016

best laid plans

To the moon and back.

It's how much I love him. Probably even more. Yoda tells me that somebody she loves very much said this to her on Friday, so when I see this in the gift shop, I take a picture for her.

The love around us is so big. Then why do I feel so incredibly small and helpless?

Leaving him is always the worst.

It's not that I can administer IV's, or call in an order for new meds, or even get a doctor into his room. I am basically useless except for kissing his head, and rubbing his feet, and reminding him to wear his squeezy socks so he won't get clots, and ordering a little more food than he thinks he'll eat just in case we get lucky.

Today is extra difficult. He tells me to go home. Our kids need me too. I know he is right, but, still it seems wrong.




Will he fall asleep without his oxygen tube in?
Is his head just half a degree warmer than when I kissed it earlier?
Will he actually finish that protein shake?


Yes.
Yes.
No.


Against my better judgement, we decide that I should go home to check on our kids. I'll bring them back in the morning for a visit. He tells me to bring a game. I smile because I don't know who he thinks he's kidding - he can't even sit up high enough to read a book, how he thinks he'll participate in charades, or Pictionary or even poker is beyond me.

There are always quiet tears when I leave - sometimes him - always me. Today is no different. But when I kiss his head it is warm. He tells me it's only because they lowered his body temperature intentionally yesterday - 95 degrees - he just seems warmer. So I drive home, but instantly wish I hadn't.

I'm home for two hours when I get the call. A rising fever, increased pain. I'm worried about infection. Rico is worried about the same thing he's worried about for 8 months - the thing that started it all - "a tumor fever" they called it. He is in good hands tonight - but I wish he were in mine.

Nothing is ever as easy as it seems - even when you have a super surgeon.


five days
















The reconstructive surgeon couldn't make it back to see us today. The resident says he's in surgery. A surgery he can't talk about, but that we will certainly hear about on the news in a week. "It's big," he says. "Very big."

Right now everything big is in this room as far as I'm concerned.

There are four IV's dripping into him and another four taking things out.

Bed rest has been ordered for five days.

Days.

He can't sit still for five minutes - five days sounds impossible for him. At the same time, he doesn't look like he's ready to bolt down the hallway anytime soon. He does have a TV to keep him occupied and a little breathing apparatus, where he can practice inhaling. That should keep him busy until he hyperventilates and passes out.

We were treated a slideshow of the operation today - all the way down to the bone. We won't be sharing those pictures - you're welcome.

The sarcoma surgeon stopped in. Right now his lungs are clear and his leg is too, but if it comes back it is almost always the lungs that get hit, so they will scan him in three months and keep scanning, keep watching.

I think we will always be watching.
Always.

Thanks for your love and support. Since he's flat on his back for five days, he can't even read a book or an iPad, but I read to him, and he knows you love him.



- Posted using BlogPress from my iPad




Friday, June 10, 2016

Clear margins.

It means that the radiation hit the right target. They got it out with room to spare - well, maybe.

They did have to peel it from his bone, so they will have to monitor that area carefully, but they got the rest. Sounds like the best surgeon in the world may really be all that.

Rico had to have a piece of stomach muscle removed to replace what they took out. He's got six drains, lots of stitches, significant pain and an epidural.

Nurse Ben: Sounds like everything went really well.
Me:Yeah from what I can tell. What about that bone peeling business? I didn't quite catch all that.
Nurse Ben: Yeah, me neither. He likes to talk over people's heads, but he really is the best guy at his job.
Me: That's what I hear.
Nurse Ben: No I mean it. He's not the best in the area, or the best in Minnesota, or the best in the country. He's the best in the WORLD. The whole world. He's got an ego, but if he says they got it - they got it.

So Ben and I are choosing optimism tonight. Optimism, sleep and pain management.

He's in rough shape, but at least tonight, we have better odds.



Location:two words

really?

The sky is black here. Like nearly pitch black.
Because nothing makes seven hours and counting of sarcoma surgery more fun than tornado warnings.


third wheel

I still don't have details, but I do know that whatever it was that's been trying to crush our dreams has been removed, blasted with a ray gun, and is being examined in a room far away from us. Which means for the first time in about a year, I will get to hug Rico without that awkward third wheel killing our mojo.

Still a few hours left to put him back together again, bit we're cool with that. At least I am. I'm just assuming he's not arguing either.


- Posted using BlogPress from my iPad

noon

Nurse Lori is my go-to for the day. She checks in on Rico's room and checks back with me. We had a six am prep time and an eight am surgery scheduled. Her first report was that surgery didn't actually start until 11.

I feel bad about this, mostly because neither of us were very happy when they wheeled him away at 9:15. If I'd known he was going to be scared and loney for another two hours, I probably would've pulled some sort of "I Love Lucy"-type stunt, dressed like a Russian surgeon and followed him in there.

Everything I've ever been afraid of these past few months is just one floor below me, but everything I've been wishing for is there too. He is absolutely my favorite part of life. I can't wait for his to get better.

The guy in the lone pullout chair just bequeathed it to me since his sister's hip replacement is done. There's a Starbucks across the street. I think I finally got Yoda off of Instagram. So far so good with the surgery - they're on hour two of trying to get that effer off of his bone - and they say he's doing great. But they're serving rattatouie (or however you spell it) in the cafeteria for lunch. Oh well - four out of five ain't bad.

this morning

It was an early morning.

We woke up at 4 to make sure Rico had time for a shower with his full anti-bacterial scrub.  I'm not sure why that was necessary, seeing as no less than 12 people were maneuvering, shaving and doodling with Sharpie on his leg. It's not like they pulled that marker out of a jar of alchohol or anything, it was just laying around. I'm all for good intentions, but why bother showering not once - but twice, with anti-bacterial soap, if the pre-op room isn't even using the same sterilization procedures as a 1940's barber shop?

I don't know if we should be thrilled or freaked out about his surgeon. Everybody who works here says his name in hushed tones. When Rico's leg didn't get autographed properly, there was a whole lot of side eye, and people muttering, "My god he's gonna have that resident's head - it's gonna be a bad day." Apparently he's a big deal - supposedly the best in the country based on his surgies and inventions. I know nothing about this guy, but I do know that all the side-eye in the world won't stand up to my crappy review on Yelp! if he messes this up.

My two favorire people are Jim, the guy who made me a breakfast omelet, and added extra cheese because he said anybody up this early needs extra cheese, and Erik, the anesthesiology resident (and former Ole) who was the only person to look me straight in the eye and take personal responsibility, saying, "I'm gonna take great care of him." Nurse Jo gets a shout out for bringing us both warm blankets and hugs, and reminding me to go visit Jim the omelet guy.

So now we wait - and wait. First they remove the bad stuff, then they get out their light sabers or whatever it is they use to zap any remaining cells, then they go get some better skin from somewhere else and make a patch with it. It could be four hours - it could be eight.


Oh - and sweet baby Jesus - under the ever-watchful eye of her half-sleeping siblings, Yoda has somehow learned to post and comment on Instagram. I barely have cell service but when it did kick in I was served with a duck-faced selfie of my five-year old slathered in makeup she mined from our dance recital bag. Throw in a few shots of her pillow, some  American Girl jewelry, heaven knows how many comments on random photos. I am sooooooo sorry.

Thursday, June 9, 2016

final countdown

Less than 24 hours. Less than 18 until I kiss him goodbye for the day.  At this time tomorrow the surgeons will be saving Rico's life. We are grateful and terrified and sad and happy and everything we can possibly feel all at once.

According to his pre-op appointment, there is good news and less good news.

Good: The MRI shows that it appears the margins are solidly clean, and that the radiation shrunk the tumor by about 2 centimeters. This still leaves something the size of a deck of cards in his leg, but we'll take shrinkage over growth any day.

Less good: It has not shrunk away from the bone, and they can't see that area as well. Plus they may have to cut some nerves just to get to it, so we don't know what that means - and none of the three highly skilled surgeons knows what it means either - until they get in there.

He will not be at St. Mary's this time around, but is expected to be at Mayo for a couple of weeks minimum. We will update here as much as possible. Rico will not be reachable by phone for at least a few days.

Thank you all for following us on this journey. Your notes, your jokes, your love makes this whole thing less lonely and less scary.


Monday, June 6, 2016

school

I have always had a flipped perception of public school.

I entered kindergarten reading chapter books and able to make change for a five. Mrs. Zander didn't have to teach me that, my parents already had.

Maybe that's why we gave so much thought to putting Yoda into kindergarten this year. She didn't need to learn to read, or count to 100. But there was so much she didn't know, so much we couldn't teach her.

Which was why our search was so frustrating. Everywhere we looked, everyone we spoke to rambled on about pedagogy and test scores and reading levels.

Reading levels.
Where else in life does this even matter? Don't we all just even out eventually? Has anyone ever lost a job because, "Well, I'm sorry Mr. S., we'd love to hire you but you're 34, and you're only reading at a 28 year-old level."

Test scores?
Unless we're taste testing cafeteria pizza, we couldn't possibly have cared less.

Oh, you have a doctorate? That's great, so did my chemistry professor and I don't want him teaching my five year-old.

So it was with some trepidation that we finally visited our neighborhood school. The principal gave us a pass to one of the kindergarten rooms. We saw the kids writing in journals, creating art, reading out loud to each other - normal kindergarten stuff.

We watched, we waited, and then we asked, "Our kid is shy, she's quiet. She's smart, but you may never know it because she probably won't talk to you. What do you do for somebody who struggles like that?"

The teacher smiled and we prepared ourselves to hear something about the programs available through the school psychologist or what pedagogy she was likely to employ based on the latest in-service program she'd attended.

"Well," she said, "that does happen sometimes. And when it does, I will love her. Just love her. Just the way she is."

It's what we hoped, what we dreamed, what we wished was true, but what we'd given up on hearing. Our kid needed to learn to count to 1000. She also needed to learn her sight words, and all 50 states, but most of all, our kid needed to learn to trust people, to love another adult, to know that the world is a good place full of humans who will like you - even love you - for exactly who you are.

It's exactly what she learned this year. It's what she needed most of all. She needed the hugs doled out at the end of the day. She needed permission to make mistakes and laugh at them. She needed to know it was ok to ask questions.

She needed love, and it's a damn shame there isn't a standardized test to measure how much a teacher's heart can change a kid's life - it's the only measure of a kindergarten teacher that really counts.




- Posted using BlogPress from my iPad

three days


We really thought we'd be done by now. Regardless of what the doctors said to us, somewhere in the back of our minds, we thought we'd be on the early half of this ride.

When we heard that surgery would be 3-10 weeks after radiation, we really didn't think we'd have to hold out for 8. But here we are.

The kids will be out of school for one day. Forget establishing a schedule, we'll barely have time to lock the doors and throw them $20 for Dominos. But we have wonderful neighbors and very kind friends who reassure us that they can look out for the kids for at least a week before they farm them out to a family of wolves.

But even with that support, everything feels wrong. People have asked how we are staying so positive amidst this. The short answer is that we have no reason not to be, and there is no point wallowing in what could be. But the long answer is that it would be a disservice to everyone who's battled this, and a gross untruth to pretend that this ride has been smooth.

We are sad. More frequently now. Sometimes we just lock eyes, no words, just tears. We have the same fears the same love and sometimes they transcend our limited vocabulary.

There is pain. Most days he gets through, but he is hurting - always.

I watch him sleep and just pray. Pray that everything goes well, pray that he feels how much he is loved, pray that our kids know how much he loves them even when he can't be with them. Mostly I pray that he can be happy - that's what I pray for most of all.




- Posted using BlogPress from my iPad

Friday, June 3, 2016

lately

We've been rolling like gangbusters lately.

What does that even mean - "gangbusters"? Who knows - but whatever it is, we've been doing it.

End of year concerts, recitals, awards programs, field trips, grad parties - throw in sarcoma surgery and our own kid's birthdays - and it's all kindsa crazy over here.

But right now our time seems short, precious. We're caught on a tightwire of wanting to cram everything in before we leave for Mayo, and just trying to savor the here and now.

We've been doing our best to try to spend a little time with each of the kids alone.

In between doctor visits for Punk (don't ask - nobody knows - probably the same deca-syllabic disease his uncle battled all through college, and never got answers for either. Don't worry my brother is still very much alive and was completely capable of running a seven minute mile when he took Punk doorbell ditching at the hotel last summer, so clearly there was no lasting damage) annnnyway, we did manage to sneak in an early birthday present for Punk - a trip to see Book of Mormon, which he's been begging to see since seventh grade. Lest you think we're those incredibly moral people, who  didn't think he could handle it - he'd downloaded the music and had the entire score memorized before he turned 13 - there wasn't much he didn't know (or hadn't imagined). It's just that - shows are expensive, we wanted it to count as a gift. We're thrifty like that. Plus once you get past the swearing, explosive diarrhea, and maggots - the end message is sort of nice - nice enough that believe it or not, the Mormon church signed off on the whole show.


For Kooka is was lunch at MOA and a manicure. She's pretty easy in that regard - a little time at Forever 21, some gelato, free cheese samples and trying all the lip gloss samples NYX has to offer, and she called it a good day.

Child three is another story. Every day is special when you're 5, and Yoda's favorite special thing is the public library. It's cheaper than a Broadway show OR a manicure, so we'd feel pretty guilty denying the kid her wish. But still . . . .

The library.
The bane of my existence.
The library.

Don't get me wrong - I'm not anti-literacy. Our library is newly renovated, and right next door to a lovely little cupcake shop that gets more of my money than it should. This library was my best friend with the other two  - 200 books about dinosaurs - check. Every obscure Wizard of Oz book ever written - check. All of the dog-eared Calvin and Hobbes books ever released - check. The other kids liked normal stuff - dragons, unicorns, mummies, poop jokes. This whole scene would be fine if she were anything like the other two.

But she's not.
Every time, evvvvvery freaking time, she drags me to the arts and craft section. Stained glass, tree-houses, make-your own scented playdough with just 26 everyday organic ingredients, plus the urine of a free-range mountain lion. That place is a nightmare.

At first I thought we could just check out the books, look at the pictures, and imagine what it would be like to make our own Amish-style candles or macrame pillowcases.

But no.

It begins before the book is even cracked open. "Oooooh - can we make this TODAY?!"

"No honey. We don't have the parts to reassemble an antique diesel engine."

"Oh - oh - oh, but we could stop at NAPA on the way home - pleeeeeeeaaaase. I've always wanted to assemble an engine."

"No you haven't."

"That's because there wasn't a book to show me hooooow. But now that I know how, it'll be easy."

Lord - save me.

I can literally hear my blood pressure increasing with my to-do list as we scan each book:

Beep - we're outside painting rocks to look like owls.

Beep - we're sewing doll pajamas.

Beep - we're raising monarch butterflies.


Beep - we're buying a box of dry ice.

Beep - we're gathering bark from the arboretum to create our own fairy houses.

Beep - we're making organic lipgloss.

Beep - we're covered in feathers and splatter paint.

Beep - we're hand crafting our own wallets out of felt.


The last one was today's adventure. She/we did a nice job. It's just the perfect size for a few dollars, and a new little something she acquired last week.

Her very own $*@!-ing library card.

Thursday, June 2, 2016

uncertain

When Rico first got his diagnosis so many people asked,
"What do you need?"
"How can we help?"

We weren't sure, and truthfully, didn't need much except time to adjust, time to process, time to figure out treatment. But people came to our rescue anyway - with food, cards, prayers, hugs. It was glorious and heartwarming. we felt completely undeserving but so so grateful..

Of course once again we find ourselves in the thick of things beginning next week. Now is when we really need help, and as much as none of us is good at asking for it, we really have no choice right now.

With Rico's surgery being rescheduled, we find our kids needing rides to camps, to jobs, back home, and heaven knows where else. We may also need some overnight help occasionally as well.  The truth is - we're still not sure what we need, but we do know that life will feel like juggling cats while walking on a bed of hot coals.

What is the best way to plan for uncertainty?
We're all a little uncertain about that.