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.

DONTATIONS

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 home shores.

DONTATIONS

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

DONTATIONS

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.

DONTATIONS

Location: still at home, still hoping
Mood: worried
Music: It seems there’s more of us at home.
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Cash Cab-ing Half the Tough Mudder

My first post not (only) about Alison in months

Can’t say things are great where I am. But we’ve had it a lot worse the past year.

So I’ve been able to do a few things for myself, like just read again. It feels weird to have any time to myself.

Speaking of weird, randomly read this page about Reality Show Secrets and realized that the “Cash Cab secret” was my story – well, mine and my buddy, Mas.

See, he was invited to be on a show – we were told – called Show me New York.

Him: Wanna come?
Me: Sure.

The day before, someone called me and asked me about a dozen trivia questions.

Producer: What is the period of violence after the French Revolution called?
Me: The Reign of Terror? (pause) That’s a weird question for a show about the City.
Producer: (laughing) Yes, Reign of Terror. And we just want to measure intelligence. Can you meet the producers in the West Village tomorrow?
Me: What’s the address?

The next day, we met them there and they told us that the taping had been moved to 23rd and Madison and hailed us a cab. After Masa told the driver where we were heading, the driver turned to us and said, “You’re on Cash Cab!”

I immediately exclaimed, “So weird, we’re actually on our way to shoot another television show!”

To which, I’m pretty sure Masa, the host, and all the producers listening in to us collectively rolled their eyes at the same time. This was edited out.

Now, the thing is, I never published that story on the blog, only told my friends – and I’m sure Mas told his friends what and idiot I was – so I’m just curious to know who posted it.

It was almost exactly 10 years ago. At the time of the taping, was still with my ex; we broke up just a month later. Thought my life was over then.

At that moment, didn’t know Alison existed. And Nate wasn’t even a thought. Now they are my whole world.

Funny how life is, yeah?

———-

Speaking of Alison…

My Radical MMA gym buddies Liz, Josh, Donald, Henry, Hassan, Roslyn, and Sawyer, along with Henry, Alesya, and Boreth, are participating in the Half Mudder Long Island 2016 race on July 24th to raise funds for Alison – they’re actually the team that’s raised the fourth largest amount of money.

Honestly cannot say where we would be without the support of so many friends, family, and total strangers. It lets us try to be somehow normal again.

Me: Morning, sunshine! Ready for another day of PT?
Her: (yawning) No…yes?

Donate to Team Alison for the Tough Mudder!
DONTATIONS

Location: still at home, which is a good thing
Mood: conflicted
Music: just want to be, happy again
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Grab your things, I’ve come to take you home

In the hospital again…wait…

Empty Hospital Room

Doctor: I’m discharging her.
Me: Are you sure?

The past year has been a series of horrifying news with a side dish of, “if you act now, here’s some bonus horror.”

  • We go in for stomach pains, find out she has a blood clot and a secondary infection, and she stays in the hospital for 8 days.
  • We go in for a blood transfusion, find out she has pneumonia and dangerously low white blood cells, stay for 10 days. Blood issue is never resolved.
  • We go in for a scalp cut, get a medication which causes her to get a seizure a minute, and she stays in the hospital, essentially for all but five days in May.

So when our doc told us that we had to go in for a fifth surgery, it was rough. Not only would we have to deal with the effects of a fifth surgery, we were certain that there would be some additional misery that would keep us in the hospital twice the expected time.

We checked in on Monday and when they wheeled her away Tuesday morning, I dashed off to my gym for 85 minutes.

When I stepped out, realized that my ringer was off and there were eight missed calls.

They cancelled the surgery.

So on the steps of Penn Station, madly called everyone in the hospital to find out what happened. (As a side note, trying to speak to a human being in a hospital is easier said than done). The surgeon ultimately called me back.

He said that just before starting the surgery, he spoke to Alison and was pleasantly surprised at how responsive she was and how much stronger she looked. So he cancelled the surgery minutes before it was about to happen and told me to come take her home.

I’m not a superstitious man. Still, I’m reluctant to write anything too hopeful. After all, all emotional pain and joy happens in that gap between what you hope and what you actually get.

And yet, I’m slightly more hopeful now. But we can’t stop until the job is done.

Doctor: Yes, 100%. Keep doing what you’re doing and we’ll see her in a month. Take her home, Logan.
Me: I’ll be right there.

DONTATIONS

Location: not in the hospital, thankfully
Mood: hopeful again
Music: My heart going boom boom boom
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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.

DONTATIONS

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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Hoping for good changes to come

She’s gaining weight

Desserts in New York City

Me: You know, if you wanted to lose weight after pregnancy, there are better ways than getting cancer.
Her: I’ll keep that in mind for next time.

Spent my first Father’s Day without the kid as he was with his grandparents. It’s fine, because I needed to focus on Alison.

Didn’t tell you about last month because I didn’t wanna just give you bad news after bad news after bad news.

Basically, she was out of the hospital only five days for May. We’ll leave it at that.

Still, in the past two weeks, she’s made more strides towards strength and health than she has in the last two months. Mainly because she’s more consistently clear-headed and understands (a) the gravity of the situation and (b) what she needs to do to fight this thing.

To that end, she’s been eating more and gaining weight. She lost a staggering amount of weight after December. We’re talking close to 35% of her total body weight. But she’s up 15 pounds from her low. And with that additional weight, comes more strength and clarity.

She’s been unable to consistently move her left leg and arm since she lost the weight but now there’s small but clear movement.

We’re hoping it’s the start of good changes to come. We’ll need that strength for when tomorrow comes.

Her: (at 4AM) I’m hungry.
Me: (groggily) I’ll get you something to eat.

DONTATIONS

Location: home, after almost a month in the hospital again
Mood: tired
Music: like a baby fast asleep in this dangerous world
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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

DONTATIONS

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.

DONTATIONS

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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