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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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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Dear Nate… 001

Beautiful and terrible things

Me and the kid

Dear Nate;

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, Nate. Because you are our son and there is titanium in your blood.

Love,

Pop

 

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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60 Minutes Killing Cancer Polio vaccine isn’t an option

Going for the superlative

Spain cookie
TL;DR

Dr. Friedman: The polio vaccine isn’t an option for Alison. Not now. Not in the future.
Me: Thank you, doctor. We’ll continue doing what we’re doing then. I’ll save her, somehow.

———-
Years ago, when Alison and I just started dating:

Me: (struggling with the tip on a check) I’m a clear exception to the stereotype that all Asians are good at math.
Her: (laughing and taking the check) I actually won the Unified Math competition in my school as a kid.
Me: You beat out the Chinese? I don’t believe it.
Her: It’s true.

One of the things I love about Alison is that she never settled for second best. If she did something, she went full bore.

She didn’t just work in a non-profit, she actually flew out to Africa and Asia on the reg to help out.

She didn’t just study Spanish, she got a certificate in fluency and lived in Spain for while.

I could go on.

Unfortunately, this is also true of her cancer. She not only has what is considered the worst type of cancer – a brain cancer – she has a glioblastoma, the deadliest form of brain cancer.

And she not only has a GBM, she has the rarest type, one that passes the corpus collsum. And she not only has the rarest type of the deadliest type, she has the most difficult one to cure, the butterfly glioma.

It’s the one time I wish she didn’t go for the superlative.

When this all first happened, pulled out every favor ever owed to me that had any chance of helping us.

To this end, someone got me in touch with Dr. Henry Friedman, the doctor on the 60 Minutes show Killing Cancer and I spoke to him about potentially getting her the vaccine.

He told me then – and we spoke again two days ago – that because Alison has a butterfly glioma, she would never be able to participate in the vaccine now, or in the foreseeable future.

Obviously, this isn’t what I wanted to hear. But I accept the world as it is, not as I hope it be. But it doesn’t mean I’ll stop looking for a cure.

I just want all of you (very kind and well-meaning) readers to know that it’s not an option and will never be.

Our search continues.

\’

Location: home today, dunno for how long
Mood: scared
Music: I don’t mind. Without you it’s a waste of time

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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 So-Called Thermonuclear Life

The other destructive elements of my life

World War II bomber in NYC
When the first atomic bomb was dropped on Hiroshima and Nagasaki, over 129,000 people were killed in moments.

I’ve met lots of people throughout the years that think that the technology of mass destruction stopped in 1945; that when we talk of nuclear weapons, we’re talking about the types of weapons that we used in World War II – 70 years ago. Unfortunately, that’s so terrifyingly far from the truth that it’s laughable. The bombs that killed those 129,000 people are now just tiny cogs in current thermonuclear weapons.

In fact, current thermonuclear bombs use the atomic bomb technology as just a trigger. See that image there where it says “fission bomb?” That’s an atomic bomb within a thermonuclear bomb.

Thermonuclear bomb

Think of a flintlock pistol; the atomic bomb would be equal to that tiny spark that the flint makes versus the bullet.

The situation with Alison is a thermonuclear bomb in my life. Yet I have two other things that are happening in my life that, individually, would be atomic bombs.

Each one of these three things has changed the course of my life forever. Each of these things would take up the entirety of this blog if not for Alison’s situation.

The thing is, this blog has always been my story. Always tried to respect the wishes of people that didn’t want to be part of it. So I can’t tell you the other two stories that take up the other 2/3s of my time, energy, and emotion.

You probably wouldn’t believe me if I told you anyway. Because I’m not sure I believe it.

And I just received some soul-destroying atomic news about one of the other stories this week.

Me: Did it…did it go well?
Her: (long pause) No. The doctor said there was nothing he could do.
Me: So what now?
Her: We wait. (sighing) And hope.
Me: That’s all I do these days.
Her: Don’t break. Your son needs you.
Me: He’s the only reason I don’t break.

Boom.

\’

Location: a very dark place
Mood: destroyed
Music: life is hard. It’s misery from the start. It’s dull and slow and painful.

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Stay, Gold

Stay Gold

Gold Statue
My dad told me a story once of a man who had a block of gold. He buried it in his yard and would dig it up periodically to admire it before burying it again.

One day, someone stole it and the man was inconsolable. But his friends told him to paint a rock gold and look at that. Because he didn’t use the gold, there really wasn’t a difference between a piece of gold and rock painted gold.

The moral of the story was that money has value only when it’s used properly. But I always thought it a weird story – the man knew what was real gold and what was paint.

Ended up bringing my wife to the emergency room again this past week. Was hoping to avoid it but we didn’t have a choice.

I’ll simply say that this time, I didn’t collapse to my knees but it was still pretty horrible. Waiting to find out more information and the waiting is excruciating.

I’m a lawyer, amongst other things. Not a doctor nor a nurse. I’m not qualified to do much of what I’m actively doing now. But I’m also an auto-didactic.

And the thing I need to figure out is how to save my family. Amazingly, Alison is not the only person in my life with a life-threatening aggressive cancer. In fact, there are three people I love in my life with life-threatening illnesses.

All of which seem to be reaching their nadir at once.

I think I’m of above-average intelligence. Figure most people think the same about themselves.

Yet, what’s the point of all the intelligence in the world if I cannot use to save my family? It’s like that guy with the piece of gold – all my intelligence is useless if I can’t use for the only thing that I care about in this rotten world.

Ever read The Outsiders? There was a kid there named Ponyboy that read a poem called Nothing Gold Can Stay.

So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

His friend Johnny implored him to “stay gold” in a world that’ll hollow out anything of value in you.

In my tin life, my family is only thing of any real value and they are all suffering. The only thing I want is for them to somehow stay.

I have to figure out a way to make that happen.

 

\’

Location: heading to the east side
Mood: weak
Music: I want it real. Run away with me now

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1,000 times an hour

Promises made, promises broken

Watercolor view of the UES, NY,

Nurse: Do you have her password?

Without getting too deep into it, the past week has been the most difficult week at home since November. And we’ve had some awful weeks in the past three months.

My insomnia makes this surreal experience all the more surreal. What little is in color is watercolored and runs together before fading to grey again.

The doc wants us to bring her back to the hospital but she was so distraught and confused the last two times that I feel it’ll only be worse a third time.

Ultimately, I have to make that decision and it is to keep her at home, however difficult that is.

Marriage is such an odd thing. You meet a stranger one night and, a little while later, you become family. To the point where I make decisions for her instead of her own parents, who have been totally supportive of all the choices I’ve made.

I have tremendous respect for them. Her mom is about the nicest person I know and her father – a war hero – is someone I would like to call a friend regardless of the reason why.

We got married five years ago this month. I told them I would always keep her safe.

I’m failing that promise right now. Keep thinking there must be something else I can do.

But there isn’t. There’s only the waiting.

The last time we were in the hospital, the nurse wanted to make sure I was family so she asked for the password I gave them when I admitted her.

It’s the same three words I’ve been saying 1,000 times an hour, every waking hour, since the beginning of November.

Me: Yes. It’s: “Please be ok.”

\’

Location: hell
Mood: struggling
Music: Skies turn to the usual grey

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Heavier than when I left

My thoughts are never far

Subway Station at Bowling Green NYC

Me: I’m off to the gym.
Her: (nods)

Wish I could give you good news about Alison and the rest of us but I can’t. New and unexpected miniature disasters visit us regularly, each one with it’s own particular set of grief and crazy.

It’s exhausting.

Haven’t been able to go fence, even though it’s around the corner, cause classes are only at night.

Did manage to get to my other gym this week, after not going for over a month.

While it’s not around the corner, it’s also not that far from me. Grab my gym bag, which never has much in it – mouthguard, clean clothes, water, and maybe my keys – and 18 minutes or so and I’m there.

It’s strange being back there. The older guys know better than to ask how I’m doing but newer people want to know details of my horror story, which I understand from a morbid curiosity point of view, but I go to forget my problems, not relate them.

Still, I try to focus on being there but it’s hard. My thoughts are never far from her. 90 minutes later, I’m done and start heading back home.

Even though the distance is the same, and my bag should be lighter since I drank the water and am wearing the clothes, instead home seems forever away.

And I struggle with a bag that seems even heavier than when I left.

Me: (cheerily) Hey beautiful, I’m back.
Her: (nods)

\’

Location: snowy NYC
Mood: struggling
Music: minor catastrophes bring me to my knees

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My job is to kill things that need to be killed

Giving us time

Redeemer Church in the Upper West Side
Years ago…

Her: Logan!
Me: (running over) What?!
Her: Spider. Kill it!
Me: Wait, what? Why?
Her: Your job here is to kill things.
Me: …that need to be killed. Spiders are our friends. (turning to spider) Arentcha, little guy?

Friends keep asking if they can stop by and take me out for a spot of rum or maybe bring me out to eat. They feel I need a break. Probably do.

The thing with me is that I have an addictive personality. It’s related to my insomnia, as I can’t turn off my mind.

Now, I feel that every moment of my time has to be spent finding a way of killing this monster that’s entered our lives.

I don’t go to the gym. Don’t cook. Don’t even have time to work.

Instead, I spend my time researching ways people somehow beat this cancer. The largest percentage of my time is wading through pages of medical jargon and separating the crackpot solutions from the things that actually have some science behind it.

All the while, hoping to find something that might lead us home. To our old mundane lives, with our old mundane problems.

Her: Kill it, Logan!
Me: Nope. I’m gonna name him, Hubert.

A Day For Alison

Regarding cooking, I rarely cook these days because my church has been sending us a jaw-dropping amount of ketogenic food – we’re on a ketogenic diet partly because of a well-researched podcast a female gym buddy sent me.

And the food has been organized by an amazing woman I met for the first time at my buddy Bobby’s memorial. She checks in on us regularly, as do many members of my church.

There’s even a fundraiser happening at the end of this month in New Jersey.

Information, donations, and time. These are the most valuable things to us right now, with time being the most valuable.

We just need more time.

 

\’

Location: home, of course
Mood: reasearch-y
Music: One minute I held the key, next the walls were closed on me

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