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Comment faire?

How do we do it?

Alison in hospital

I was terrible French student – no fault of Mrs. Reynolds. Took it mainly because there was a pretty girl in the class. Story of my life, yeah?

When I could actually speak it (and I no longer can), there was one song I enjoyed above all others, the Les Miserables song, Demain.

It starts like this, with the rather inelegant translation, following:

Comment faire
Verrai-je un jour la fin de ce calvaire
Vivrons-nous libres enfin et sans mystère
Sans avoir à trembler sans cesse

How do we do it?
Will I see one day the end of this quest?
Will we finally live free and without mystery?
Without having to constantly be afraid?

And ends like this:

il me faut protéger sa vie
demain nous partons loin d’ici
Demain sera pour tous un lendemain
qui ne peut pas mentir
c’est demain que chancun connaîtra son destin
demain . . . demain . . . demain.

I must protect her life
Tomorrow we go far away from here
Tomorrow will be a new day
that will be the truth
It’s tomorrow that each will know his/her destiny
Tomorrow . . . tomorrow . . . tomorrow.

We came back from the hospital earlier this week. Just like with the other extended emergency room stay, they were unable to figure out why her lab results were so bad.

Also like before, we left because her staying there was just making her worse. The surgery that we were hoping would fix a few things, didn’t. But I’m still glad we did it because, cosmetically, it made her look like the old her. So that’s something positive.

And now, like before and always, we try to figure how how we do everything we need to do to make it to tomorrow.

Me: How are you feeling?
Her: Tired. But glad to be home.
Me: Me too.

\’

Location: home, after two weeks
Mood: tired
Music: mon sang se glace dans mes veines

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One more surgery down, one more cancelled

Just waiting for some improvement

Wife at the hospital surrounded by doctors.

She survived the last surgery a-ok. But, like always, it’s the recovery that eludes us.

She was actually scheduled for surgery eight today but it was cancelled at the last minute again because the doc wanted to give the last surgery a little more time.

The problem is that it’s been over a week and there’s been no change. The last, 7th, surgery was supposed to fix something with her but it didn’t. And this latest surgery was cancelled. So we continue to wait.

She sleeps most of the time. I sit with her most days in the hospital. She hasn’t improved at all so we’re still in the ICU, which is upsetting. Yet she continues to inspire me.

In the meanwhile, the boy has started to crawl. And neither his mother nor I were around to see it. It’s the little things we miss that hurt the most, I think.

Did find a moment to bring him to see his grandparents out in Queens over the weekend. That was the one bright spot in an otherwise dark week.

Dad: He looks just like you when you were a kid.
Me: Thanks.
Dad: So fat. Soooooo fat. Look at those legs!
Me: Thanks, dad.

\’

Location: her bedside
Mood: weathered
Music: Command me to be well

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Dreaming of a Holiday in Spain

Surgery seven

Admission Ticket for The Met
She went to the ER for the eleventh time last week and has been there ever since.

Yesterday, she had a surgery to replace the titanium mesh that was put on way back in Dec to replace her skull. Essentially, it was failing, causing her to have a lot of nausea and more weight loss.

The mesh was always supposed to be temporary; when Alison collapsed, she was only an hour from death. They had to remove her skull to keep the pressure from killing her. The mesh was put in place so that she didn’t have to have the further indignity of having to wear a helmet all the time.

But she didn’t look like her. It looked as if someone had taken a swing at her with a baseball bat. In time, we all got used to it but I did think that, if nothing else, after this surgery, it would be nice to see more of the old her.

Couldn’t handle the thought of her going through yet another surgery so I walked outta the hospital and ended up at the Met.

The last time I was there, was single, childless, and not sleeping. Now, I’m married, with a kid, and not sleeping.

And the last museum I went to was with Alison.

Sighed, shelled out a few bucks for a ticket, and kinda just walked around in a daze.

Arms and Armor at the Met

Ended up at the Arms and Armor section. Never told you exactly what type of fencing I do, did I?

It’s Filipino fencing with a dash of Spanish rapier and dagger. Thought about our last trip to Spain. We always said that we’d take a trip to Toledo in Spain, the home of Spain’s greatest swordsmiths.

As you see, everything reminded me of her so I left and walked back. Didn’t get a call about the operation so I assumed that no news was good news.

Suit of Armor at the Met

When I got back, they told me that the operation was a success although that old blood issue has cropped up again with another new issue.

They’re going to keep her for a while to make sure that everything is ok. Of course, this means that I can’t do any of the experimental cancer treatments we’ve been doing.

So we wait. Like always.

And I dream of a holiday in Spain with her and my son.

\’

Location: not Spain
Mood: worried
Music: we could simply pack our bags and catch a plane to Barcelona ’cause this city’s a drag

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On the aggressive side of aggressive

30 or 12,000?

Alison and the Sea

Me: What’s wrong?
Her: I had a dream, I think, that I had a seizure. Or it really happened. I don’t know. I don’t know what’s real.
Me: Your mind is playing tricks on you.

We live our lives through stories. My hope is that some of my stories stay with you, in some way.

When I was a kid, read about the Mutiny on the Bounty and a portion of that story stayed with me. After Fletcher Christian took over the ship, he tossed Captain Bligh into a small boat. Christian assumed that Bligh would head straight to an island called Tofua, about 30 miles away and, to this end, gave them all five days worth of supplies.

But Bligh had a pretty audacious plan.

He was going to travel 4,000 miles – that’s the 500 miles more than the distance from New York City to London – in an open boat with five days worth of food and water.

Blight and his men were going to make it home or die trying.

So from April 28, 1789 they sailed in open ocean waters, each eating an ounce of food and half-a-cup of water a day. 47 days later, on June 14, 1789, they made it to safe to shore.

It wasn’t until March 14, 1790 that Bligh made it home to England. All told, they traveled 12,000 miles by ship.

With a glioblastoma, the most you can hope for is a few months.

I don’t tell you everything that goes on. Some of it is too horrifying to repeat. Like in this entry, didn’t mention that the doc said something I’ll never forget:

Glioblastomas are aggressive cancers. And her particular glioblastoma is on the aggressive side of aggressive. (pause) If you want to make her comfortable, I’ll do everything I can to help.

As soon as I heard him say that, immediately thought of Bligh. The doc was saying she could only make it the 30 miles to Tofua.

And my next thought was, “F___ that. We’re going home.”

That’s when I decided to start looking for another hospital. Because I didn’t want that kind of help. I didn’t want her comfortable. I wanted her in the fight.

Home is 12,000 miles away. And we have to endure tsunamis and tidal waves to make it there. Yet, we have no choice but to try to make it home.

Even if I have to swim with one arm around her and one arm paddling, I’ll get her home, somehow. It’s my job

And two days ago, we got a lifeline in the form of some hope. But that’s a story for next week. For now, we keep searching for familiar shorelines.

Her: I kept telling myself, “When Logan gets home, it’ll be ok. When Logan gets home, it’ll be ok.”
Me: Well, I’m home. We both are. And it’ll be ok.

Bounty Voyages Map

Should mention that her first doc did an amazing job getting her to where she is now. For that, I’ll always be grateful.

But now things are different. We need someone who is believes she can make it safe to familiar shores.

\’

Location: two days ago, the hopsital again
Mood: hopeful again
Music: though the truth may vary, this ship will carry our bodies safe to shore

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My grandfather passed

Hard to describe how it feels

DSCF5492
The thing with this disease of Alison’s is that everything else is filtered through it.

My grandfather just passed. I’d like to comfort my mother and yet I don’t have time to tear away from Alison or the kid to do anything meaningful for her.

He was the last of that generation for me; I have no biological grandparents any more. Despite not seeing him in over a decade, in addition to the sadness, it’s a strange feeling of … loneliness? Not sure how to describe it.

Last saw him on my birthday, April 17th, 2005, 11 years ago, which might explain the pants in the picture below.

Had meant to see him and my grandma again but then I got robbed and had my own cancer scare so I couldn’t.

Couldn’t even go when my grandma passed because I was tied up in court and crap, piecing my life together again.

And the past seven years have been one bit of heartbreak after another. Then Nate was born. And then everything went to hell.

Life gets in the way.

He was 97 and had lived a good long life. I look at Alison and think that she’d have to live another 60 years to equal what he’s lived through. What a thing to think.

Was told that, near the end, he combed his hair. He was getting ready to see his wife again. We do so love our wives in my family.

Speaking of love, grandpa, I always loved you and grandma, even if I couldn’t head home to tell you in person.

You woulda loved to meet the kid. He’s got a grin like grandma’s. I woulda loved for you to meet the kid.

Rest in peace, and tell grandma that I miss her and our late night talks.

imgp0473

\’

Location: home, debating whether or not to go to the hospital again
Mood: sad
Music: Monsieur, lay down your burden

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What? You too? I thought that no one but myself…

I wish it was a bus

RadicalMMA ToughMudder Team(c) 2016 Alesya Yelisow

It was 97 degrees on Saturday. Which is the same day that my cousin and about eight other people from my gym ran in the Half Mudder Long Island 2016 Tough Mudder race to raise money for Alison’s care.

It’s a motley group of people. There’s an actor, an appraiser, a chef, and…not really sure what the others do.

Not sure what they do because, in my gym, we all go there to fight. There’s a shared passion for the struggle. I’m not even sure I know everyone’s real name as most people have shorthand or nicknames. The names other call us, the occupations we have, are all left on the doorstep as we enter. All that matters is that you have the same shared passion for the struggle.

CS Lewis once famously said that, Friendship is born at the moment when one man says to another “What! You too? I thought that no one but myself….” It’s born when you meet someone else of your tribe that sees the world in the same way you see it.

It means more than you might imagine for them – or anyone, really – to see my wife and our situation and think, How can I help?

———-

When this all went down with my wife, my buddy Max – also from my gym – wrote me: If I could stand in the way of the things that are hurting Alison and you and your family nothing would ever touch you. I wish things worked that way.

And that is how I feel. You know the strangest thing that I think of every day?

I wish it was a bus. I wish it was bus racing towards Alison instead of cancer. So I could hurl myself into her and get her out of harm’s way.

How I wish things worked that way.

I wish it was a bus. Or two punk kids. If only…

Her: What about you? Are you ok today?
Me: I’m only as good as you are. If you’re ok, I’m ok.

Location: still at home, still hoping
Mood: worried
Music: It seems there’s more of us at home.

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Awesome

My wife inspires me

Alison and the kid

Me: How are you feeling?
Her: Tired. But a little better.

The traditional definition of “awesome” is “inspiring great admiration and awe.” It’s something that fills you with awe and humbles you.

John Glenn – the first American to orbit the Earth and the fifth person in the history of the world to go to space – would probably say that his wife is awesome.

They’d known each other since they were children and during that time, she had an 85% stuttering disability – meaning that 85% of the times that she tried to speak, she couldn’t.

The person Glenn knew wasn’t the person the world knew and vice versa.

It wasn’t until she was 53 that she could speak normally. Which means that for 53 years, she struggled to do things that we take for granted. I can see why Glenn would consider his companion his hero; that she would keep trying when all seemed hopeless.

53 years is a long time.

So it is with me and Alison. I don’t think I will ever do anything that compares to what she’s been doing to beat this thing. Frankly, I don’t want to.

She’s stronger now than she’s been in seven months. She’s doing things that are awesome in the truest sense of the word: What she does fills me with awe.

Her: I want to stand again.
Me: I think you will. If you keep working as hard as you’ve been, you will.

\’

Location: not in the hospital, thankfully
Mood: hopeful
Music: could sit for hours finding new ways to be awed each minute

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Dear Son… 001

Beautiful and terrible things

Me and the kid

Dear Son;

As I write this, you are almost seven months old. I feel guilty that your Grandma McCarthy has been taking the most care of you because I need to focus on your mama.

But you’re always laughing, so I assume that you’re generally happy and oblivious to the terrible things around us. That’s actually why I’m writing you.

A fellow New Yorker – of which you are a proud member – named Frederick Buechner once said, “Here is the world. Beautiful and terrible things will happen. Don’t be afraid.”

(I will quote things to you a lot because I think other people say things far more eloquently than your pop can; you’ll have to learn to deal).

What Buechner said is true, with this caveat: The terrible and beautiful are often intertwined.

By all metrics, your mother should have died on December 10th, when you were just a month old. I say this terrible thing as plainly as I can.

But equally plainly, I tell you: Your mother came back an hour from death – crippled and half-blind – because she couldn’t bear being away from us. From you.

She came back with a titanium mesh where her skull once was. So when I tell you that she is made of titanium, I mean that both figuratively and literally.

She fights every day to see you and hopes to hold you again, like she did when you were born. She wants to see you sit, stand, walk, and run.

She wants to see you become you.

You know, on December 10th, you hadn’t yet learned how to laugh or smile? I think she came back to experience that.

Kid, that is love like I’ve never seen before. If that’s not beautiful, I dunno what is.

This letter is late, sorry. I’d meant to write it months ago but life got in the way. You’ll find that the life’s terrible things get in the way of your plans and dreams.

It’s the nature of the world to whittle you down to nothingness. One day it will win. We accept that in our family. But we fight the world every step of the way because we will not go quietly.

We struggle and scuffle until we’re breathless and weak. Life demands struggle.

Our family motto is a pictograph of a blade in a heart – we survive things that would kill other people. We survive.15207350313_c43e87a6b6_c

Know that the terrible things will come. But so will the beautiful things. They go hand-in-hand.

Your mother is the most beautiful thing that has come into my life and she came with this terrible thing. Neither of us knew. I would not change a thing, except maybe bring her to the hospital the day we met to get rid of this damn cancer. And buy more shares of Facebook. (Always invest your money – that’s another letter for another time).

I will love your mother until the day I die. You as well.

In any case, son: Here is the world. The price you pay to be here is to endure the terrible. So we pay our fare and we take our seat, come what may.

Don’t be afraid. Because you are our son and there is titanium in your blood.

Love,

Pop

Dear Son… 001
Dear Son… 002: Wait and wish
Dear Son… 003: Rain happens
Dear Son… 004: Understanding is gold
Dear Son… 005: Language is telepathy

 

Location: home, after almost a month in the hospital again
Mood: tired
Music: it was then that I knew only a full house gonna make it through

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You’re the hubs

One bite at a time

bed
There’s an old joke that goes:

Q: How do you eat an elephant?
A: One bite at a time.

Think that if I went back in time and saw all that she would have to go through, I woulda crumbled on the spot.

And yet, the dull drip of constant crises in our lives is almost routine now.

Last week was her first Mother’s Day and as well as her birthday.

She spent her birthday by her lonesome getting cut open yet again as we went to the emergency room for the sixth time.

That issue she had in April roared back in a spectacular way – blame myself for trying to keep her from staying yet another spell in the hospital. Perhaps if we just did it then, we wouldn’t be here now.

Wonder if I’m making any good/rational decisions at all. Constantly second guessing myself. There are moments where I wonder if I’ll make it with my sanity – or her’s – intact.

Me: Do you know who I am? Do you know where we are?
Her: (shakes head)

But what else is there to do but go on? And she does, somehow. A bite at a time.

Like I said, there are moments when I cannot believe we will do anything but crash.

But even in those darkest moments, when I sit by her bed and think all hope’s lost, she still manages to pick me up and make me think that we can get in front of this thing somehow. That we’ll make it.

Me: Do you know who I am? Do you know where we are?
Her: Yeah, you’re the hubs. (looking around) I can’t believe we’re here again.

\’

Location: the hospital, yet again. No river to be seen.
Mood: crushed
Music: I think I’m ruined. Didn’t anybody, didn’t anybody tell you?

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My favorite things

May be ok

The kid

For those long time readers of my blog, you know my favorite drink at home is aged rum – on the rocks with a slice of orange, to be specific.

And when I’m out and about, find it hard to resist a daiquiri or an old fashioned with rye.

My favorite foods are chili, gyros, and dumplings. In no particular order.

My favorite place in the world is the pier at Riverside Park. My favorite thing to wear is my yellow leather jacket. My favorite things to do are wrassling, fencing, and cooking. In no particular order.

And up until five months ago, my favorite time of day was 10PM, when I went to bed and chatted with my favorite girl about our respective days.

But for the past five months, my favorite time of day has been 7:30 at night.

Because that’s when I would take a shower in my blue bathroom. And with the running water coming out of the best shower head and an exhaust fan that sounds like a wind turbine, I could lean against the shower wall and weep without my wife or little boy knowing.

For the first two months, it was every night I wasn’t in the hospital. Every goddamn night.

As the weeks wore on, it wasn’t every night, but it was still probably most nights.

But as of last week, my favorite time of day is the morning, when I take Alison out to the living room and she sees the baby wearing her pregnancy necklace and smiles.

And he smiles back at her and laughs. My two favorite people in the world.

For just a moment, I think that everything may be ok.

I wish and wish and wish…

\’

Location: ever at home
Mood: hopeful
Location: 20:00 yest, leaving office hating life
Mood: indescribable
Music: On silver stars I wish and wish and wish (Spotify)

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