Dear Nate… 002: Wait and wish

The Stanford marshmallow experiment

Father and son

Dear Nate;

As I write this, you are almost sixteen months old. I still feel guilty that your Grandma McCarthy has been taking the most care of you because I am still focused on your mama.

So many people write me asking about her these days. They’re waiting for some news. We are as well. We wait to see if we have more monsters to fight. We wait and wish.

For now, we pretend we’re a normal family raising you.

On that note, I learned something in college that stayed with me all these years called The Stanford marshmallow experiment.

In it, several scientists found a simple 15-minute test given to 3-5 year olds that later turned out to be the single biggest determinant of a child’s success in the world – more than IQ, education, wealth, or anything else.

The test went like this:

  1. A child was led into a room, empty of everything but their favorite food, like a marshmallow, on a table.
  2. The child was told that he or she could have the marshmallow now OR
  3. Wait 15 minutes and they could have two of them.

The children were tracked for several years and the researchers found that those that waited that extra 15 minutes did better at pretty much everything, versus the ones that would simply eat the marshmallow as soon as the researchers left.

A book I love called The Count of Monte Cristo ends with this line:

All human wisdom is contained in these two words – “Wait and Hope”

I wish so many things for you. Suppose all fathers do. But what I wish most for you is not wealth, intelligence, health, or any of these things.

What I wish for you is that you are patient and optimistic. If you are these two things, all those other things will follow and so much more.

This writer named Bernard Malamud once said that, Life is a tragedy full of joy.

If all human wisdom is contained in the verbs: Wait and Hope, then the essence of life is contained in the nouns: Tragedy and Joy.

Tragedy will come, that you can count on. I wish it weren’t so. After all, it’s the nature of the world to whittle you down to nothingness.

But joy always comes again, I promise. You just have to be patient.

We have so much tragedy, yes. But we also have so much joy because we have you. You are our greatest joy.

Always wait and hope, Nate. Because joy always comes again.

Love,

Pop

\’

Location: Still at home, waiting.
Mood: anxious but patient
Music: Just sit down, take it slowly. You’re still young, that’s your fault
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Lovely, dark and deep, but we have promises to keep

There’s no way out but through


We ended up getting our second treatment this last Monday. Took three times longer than we had expected but I was thrilled to be there.

Looks like we’re back on track. For now, at least.

I spoke to a cancer researcher last week too. He said that Alison was the longest lived butterfly glioma patient he’s ever heard of. It’s a dubious distinction, and still not enough for us.

On that note, had numerous friends and relatives ask if she can get a break: Can’t she just have a few months without swallowing 30 pills a day, without having needles stuck in her every week, without wearing a helmet of magnets 24/7, without inhaling an astringent four times a day?

The short answer is no.

Because they don’t become friends with other glioblastoma patients and caregivers. They don’t have to hear: We put David in hospice this week. Jessica had three new tumors on her last scan. Maddie passed away today.

It’s tough to hear because you hope everyone else can pull through. You hope your loved one can pull through.

But the truth is a powerful thing. The truth is, most people are dead from this damn thing within 18 months. And most of those people are people that can walk and use their arms. People that had 100% of their cancer removed. People that went to the best cancer centers in the world.

Most people start off far better than Alison and still died.

If there’s any way at all for her to survive this, it’s because she doesn’t stop until the job is done.

It’s like that old Robert Frost poem:

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

No one goes 12,000 miles if they can go 30 unless they feel they have no other choice.

We don’t have a choice. No one with a glioblastoma really does. There’s no way out but through.


Some college friends of mine are throwing Alison a fundraiser dinner at Nickle & Dinner on March 2nd, 2017.

So if you’re hungry and in the NYC area looking for a bite a eat, hopefully you can stop by. Ask for Kathy or Ricky, two dear friends of mine.

As for us, we’d love to go. But we can’t, cause we have monsters to fight.

 

\’

Location: Home again
Mood: cautiously hopeful
Music: say honestly you won’t give up on me, and I shall believe
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Daring Greatly

Looking for a way out

Columbus Circle Subway Station NYC

Her: Should we do it?
Me: We might not get it. It might not work. It also might hurt you and set us back. But if it does work, it’ll give you the best shot at a normal life. 
Her: And if it doesn’t?

We had a quiet Thanksgiving. Her mom and sister were here.

Didn’t really enjoy it as much as I could have because a month earlier, got a bill for $802.12 from a hospital. Was fighting it when the hospital turned around and submitted a bill for $96,662.80 to us just before the holidays. Something else to battle.

Then again, if I had known they’d change it from $802.12 to $96,662.80, maybe I’d have just paid it.

On somewhat related note, we had another MRI this past week. Her scans are stable again; unchanged from September.

While this is good news, just like the last time, was hoping for shrinkage.

If you’ve never seen an MRI, cancer shines like a white neon light, against a background of grey. It’s unmistakable.

As always, those two bits of cancer lit up. Also as always, felt that gnawing fear in my belly.

Here’s the thing, the alternative of stability could have easily been growth. And these are much smaller bits versus the grapefruit-sized tumor in her head initially.

We’ve been doing some pretty highly experimental stuff for the past year, which might explain why the scans are stable. Now I’m pushing for her to try some even more potent stuff.

Every decision, wonder if it’s the right one and I wonder if I’ll regret not being content with what we have. The $802.12 versus the $96,662.80. Tofua versus London.

But only for a moment. We have to push against this damn thing because it’s always pushing against us.

Years ago, wrote about Teddy Roosevelt who said to always try because the person that tries:

at the worst, if he fails, at least he fails while daring, at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly,

If there’s anything she does, she tries. She dares, greatly. F__k this thing.

Me: Then we’ll find another way.
Her: (thinking) I want to try.
Me: (nodding) I knew you would. Thank you.

———-

One of my other atomic bombs went off.

I’d really like 2016 to be over already.

\’

Location: waiting for the dentist
Mood: struggling
Music: It kissed your scalp and caressed your brain
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Halloween 2016

Alison and the kid say Hello again

Me, Alison, and the kid
The last time I posted a pic of Alison, all hell broke loose a few days later. But we can’t live in fear, can we?

Me: The past few days have been pretty good, all things considered…
Her: That’s good to hear.
Me: …so don’t screw it up.

———-

A year ago, around this time, Alison was close to nine months pregnant and super excited for this (2016) Halloween to happen. I remember that we discussed all the possible things we might do.

She never thought then, of course, that she’d be battling for her life for most of 2016.

Man, who’d ever think such a thing?

Anywho, woke her up yesterday and showed her the kid as Batman and she smiled. Alison’s mother and I put her in a Batgirl shirt and I put on a Nightwing shirt, for those of you that know what that means.

Then we took the picture you see above.

Her best friend stopped by, unexpectedly, as well so they chatted like old times.

It wasn’t the Halloween we had hoped for last year. But it wasn’t all bad. Any day she’s happy’s a good day.

Her: (laughing) I’ll do my best.

Batman hears a call for help

Commissioner Gordon: What is it?
Batman: Danger, Commissioner. Danger. (leaps)

The kid, sleeping

Commissioner: Did you just fall down?
Batman: ….No

\’

Location: home
Mood: busy
Music: there’s nothing else in our lives so critical, as this little home
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No one ever said it would be this hard

Thank you for setting her apart

Two empty chairs outside NYC restaurant

Alison’s been pretty stoic about everything that’s happened. Every once in a while, though, the gravity of the situation hits her – and us.

After dinner the other day, The Scientist came on and when they got to the part that went:

Tell me you love me
Come back and haunt me

she started to cry.

Her: It’s so sad.
Me: “Come back and haunt me?”
Her: (thinking) Yes, that is sad. I try not to think about things like that. But that’s not the line that makes me so sad. It’s the one that goes, “Nobody said it was easy. No one ever said it would be this hard.” (pause) I can’t believe it’s been so hard.
Me: As long as we have 1% of 1%, we’ll keep trying.
Her: I will. I’ll always fight this.

Years ago, told you that I met a girl and set her apart from everyone else in the world. That’s what happens when you come across something or someone special.

That girl Annabel from my last entry wrote me to tell me that she hosted a fundraiser at her home to help Alison and sent us a – wholly unexpected – check. Below is a picture from the fundraiser. I only personally know one person, Annabel. And Alison knows no one.

But each of these strangers, like so many others, have gone far outta their way to help us.

There are 880,000 words in the English language. And yet there are no words to adequately express my gratitude that, in this past horrifying year, so many people have set Alison apart as well.

Suppose I’ll just have to settle for thank you, as always, however inadequate it feels to me.

Fundraiser for Alison

\’

Location: home, making food
Mood: sick
Music: You don’t know how lovely you are
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We never get a good week

Good news for a change…but wait…

Back in the ER again
Originally wanted to share some pretty good news with you.

Alison’s original tumor was huge. What was removed was the size of a grapefruit and that only represented about 80% of it. The fact she was walking around symptom-free for so long is a miracle in-and-of itself.

The remaining 20% was dealt with via radiation and chemo and after all that, that huge single mass was divided up into four discrete areas of tumor.

In the last MRI last week, two were not to be seen – which means that:

  1.  technical error happened two months ago and there never were those two spots of tumor to begin with,
  2. a technical error happened last week and the tumors were missed, or,
  3. those two spots disappeared.

Of course, both 1 or 3 would be ideal for us. But we won’t know for months.

The other two spots of tumor are large.

The most dangerous one, in the middle of her head, is unchanged. And that’s actually pretty good news because she’s not had any meaningful treatment since January.

And now for what was the best part: The other known piece of tumor has shrunk.

Why that is, is anyone’s guess. Perhaps it’s the insane things I make her do. Perhaps it’s the lingering effects of the radiation. Perhaps it’s a combination of the two. We don’t know.

Actually, this would normally be astoundingly good news, but for us – for her – it’s never just good news. We always get a side dish of: “But wait…”

Last night, we were in the ER again – the 10th time in 10 months – because she’s acting the way she did earlier in the year: Sleeping all the time, out-of-it, and very nauseated.

Why that is, is anyone’s guess as well.

After a night of tests, they couldn’t figure out why, and they also noticed that her bloods are bad again. This time, however, I insisted we go home rather than spend another week in a hospital with people poking and prodding her only to not be able to figure anything out again. So late last night, brought her home.

The short theory is that the surgery we didn’t get in July, we shoulda gotten.

It’s never so straightforward, is it? Figuring out what is felicitous and what isn’t.

A month ago, I was thrilled they let her go home and skip that surgery.

Now, I’m not so sure. I’m not sure of anything these days. Except that I have to, somehow, find a way to get my family home. Somehow.

\’

Location: the @#$@##@$@# hospital again
Mood: conflicted
Music: This is the joy that’s seldom spread
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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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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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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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