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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Look for the helpers

Thanks for helping

Bethesda Terrace and Fountain

Went on a kinda roadtrip this past weekend. Was the first time I’d been out of New York City since this entire thing went down with Alison.

We needed a washer/dryer, you see. The laundrymat around the way just closed and having a kid and a sick wife means laundry. Lots of laundry.

A woman was selling her ten-month old set out in NJ but I’d no means of getting to her. So I asked on FB if there was anyone I could hire to move it for me.

A friend-of-a-friend named Phil immediately said he’d pick me and bring me over. A few hours later, was in the car with a relative stranger on the way to another stranger’s house in New Jersey to either pick up a washer/dryer or get stabbed. It was the former, luckily.

Phil helped me haul this monstrosity out of this lady’s house. As we struggled in the rain to get it into Phil’s car, the lady started to cry. She was moving cause she had to, not cause she wanted to and couldn’t take this thing with her.

I told her not to cry, that she’d be ok. She smiled and told me I would be as well. Let’s hope we don’t make liars of each other.

After a slow drive back into the city, Phil and a neighbor helped me haul this thing into my home. Tried stuffing $100 into Phil’s glove compartment but he wouldn’t take it and just took off with a smile and a wave.

Spent the rest of the day moving it into place with the help of some other neighbors and hooking the whole thing up. Was late when it was all over.

Fred Rogers used to tell children that, when they were frightened, to “Look for the helpers.”

Alison’s cancer has been many things, all of which were anxiety producing.

And anxiety is just a fancy word for fear.

But the helpers have made it better – friends, strangers, and family.

You know, this girl named Annabel shows up at my doorstep every Wednesday with some insanely good homemade food she cooks. And a fella named Anthony brings food from his restaurant every Thursday. And then there’s a girl named Kristin comes over a couple of times a week to do PT with Alison. They were strangers to us.

Plus we have friends like Rain, who just built me something to make the washer work better and Alison’s best friend Lacey, who sends someone to watch the kid almost every day.

It’s all been frightening. But the helpers make it less so.

Her: Who was that?
Me: Someone who wanted to help us.
Her: That’s really nice of him.
Me: It is. It really is. Get some rest.


Location: last weekend, the West Side Highway going 10 mph
Mood: slightly less anxious
Music: I fight. Now I’m away
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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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Just a cruel tease

Another surgery

Before all this hell
Before all this hell

Me: Can I tell you a joke?
Her: (nods)

Alison’s not doing great. Thought we had made a major turn for the better the other day but it was just a cruel tease.

She’s sleeping all the time again and can’t seem to keep any food down. She lost several pounds that we struggled to put on. The doctors want to operate on her yet again – and the expectation is that it means a minimum of three months that we can’t do any of the treatments we’ve been doing that might have caused some of the cancer shrinkage in the first place.

After a lot of soul searching, we’re back in the hospital at some point this month for surgery number seven.

Would do anything to take this burden from her.

It’s maddening. Every time we think we’re moving forward, we’re reminded of just what a beast this cancer is.

There’s one treatment left that we can still do while we wait for this surgery. It involves her breathing in a medication that burns like hell through a mask. Four times a day. So I try to help her pass the time as best I can.

Me: OK, so a teacher asked her class to make sentences using the word “beans.” One student says, “My father grows beans.” Another said, “I eat beans.” Then teacher turned to a little girl who thought for a second and said: “We’re all human beans.”
Her: (smiles)
Me: Well, if nothing else, you can’t divorce me.
Her: (through mask) I would never.
Me: Good. (quietly) Don’t ever leave me.


Location: this side of hell
Mood: crushed
Music: it’s not so tragic, if I don’t look down
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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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My grandfather passed

Hard to describe how it feels

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.



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?


Speaking of my gym and helping, another member of my gym, Christopher Vallaro, was arrested for allegedly beating up two Muslim teens on July 2nd outside a mosque. He said that the two teens were trying to grope and rape his girlfriend and he came to her aid.

He was cleared by the police for a hate crime after surrendering and telling his side of the story. I don’t know all the details, but Chris isn’t a racist.

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…

But I digress. I believe Chris. If anyone ever tried to hurt Alison or the kid, I would find myself surrendering myself somewhere. But only after hurling myself into harms way.

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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