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, spoke to was Dr. Henry Friedman, the doctor on the 60 Minutes show Killing Cancer 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
 Subscribe!
Like this post? Tell someone about it by clicking a button below.

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.

DONTATIONS

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?
 Subscribe!
Like this post? Tell someone about it by clicking a button below.

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 chiligyros, 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 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 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…

 

DONTATIONS

Location: ever at home
Mood: hopeful
Music: On silver stars, I wish and wish and wish
 Subscribe!
Like this post? Tell someone about it by clicking a button below.

She’s still in the game

Still in the fight

Chad Hernandez
Whenever I’m gone from this blog for a while these days, you can assume it’s because something crazy is happening and I’m too busy to update. This past week was no exception.

We had to go to the hospital on Sunday – which happened to be my birthday – yet again, for both an MRI as well as a new issue that cropped up. After a good deal of negotiations back-and-forth, I managed to avoid our being admitted to the ER for a sixth time. We ended up making it home at 8PM that night.

But then we had some good(ish) news. Her MRI reading came back late – really late – the following day. No new growth. So, while that’s not the outstanding news of shrinkage, it’s far, far better than growth. And what’s more, this is no growth while she’s essentially not had any treatment since January 25th.

Perhaps the best thing is that the old Alison has been making more and more appearances at home. She smiles at the baby and at us, watches TV from time-to-time, and engages us in normal conversation.

Her: (looking at baby) There’s my sweet boy.
Me: He’s getting big – he wears 6-9 month old outfits at 5 months. All he wants to do is eat.
Her: (laughing) Well, he is your son.

It’s the most hopeful we’ve been in a while.

Because of all the turmoil, I’ve not been to the gym but I still regularly speak to my coach there. He was one of the first people I mentioned this to because of all the fundraising he and the gym has done. And because he’s a source of great comfort for me.

Me: Finally, some good news. It’s not great news but it’s definitely not bad/horrific news. We were certain that, after three months of her being in and out of the hospital, it would be bad. Even her doc prepped us for that.
Him: I’m so happy for you. Still in the game with a fighting chance. That’s all you need.

She’s still in the game. We’re still in the fight.


DONTATIONS

Location: on a sunny street in Manhattan
Mood: cautiously hopeful
Music: If you can hold on, hold on
 Subscribe!
Like this post? Tell someone about it by clicking a button below.

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.

DONTATIONS

Location: a very dark place
Mood: destroyed
Music: life is hard. It’s misery from the start. It’s dull and slow and painful.
 Subscribe!
Like this post? Tell someone about it by clicking a button below.

I’ve missed you so much

Your American Boy

It’s been five months since we started on this nightmare. It honestly doesn’t feel that long. The constant string of emergencies and sleepless nights make it just seem like one long, hellish, week.

Think one of the worst parts of it all is that the woman I knew has left. In her place is someone that I love no differently, but isn’t the woman I once knew.

This woman is always tired, scared, and confused. Perhaps worst of all, she’s silent. She can speak, she just doesn’t, choosing instead to stare out into the world but not take part in it.

It’s lonely when we’re together.

For those of you that have read this blog for a while, this is a far cry from the clever and confident woman I once knew.

Actually, what I just wrote – that I love her no differently – isn’t quite true. In some ways I love this version of her even more.

Because I feel I need to take care of her, something I never felt before when it came to the woman she once was.

Said many times that we value things that are rare. Once in a very rare while, the old Alison will come back and visit us, if only for a fleeting moment. That too makes me love her all that much more.

A song came on one day when I was giving her lunch. It was American Boy by Estelle, a song I referenced years ago before I met her.

Despite the fact that I have no singing voice, at all, to speak of, I sang a bit of it as I stood up to clear off the table.

Take me on a trip, I’d like to go some day
Take me to New York, I’d love to see LA
I really want to come kick it with you

And then I heard a familiar voice I’d not heard in a while sing:

You’ll be my American boy…

Me: (turning around quickly) Alison? Alison? Do remember this song?!
Her: (nods, turns away)
Me: (quietly) We’ve missed you so much.
Her: …
Me: Ah. (trailing) Yes. I’ll be your American boy…

DONTATIONS

Location: nowhere
Mood: broken
Music: Could you be my love, my love?
 Subscribe!
Like this post? Tell someone about it by clicking a button below.

Conversations with friends outside a hospital

Can’t even self-medicate

Rum on the rocks

Had a conversation with three friends over the week. Told one of them that I didn’t want any visitors in the hospital but I suppose some friends never listen.

Him: I’m outside, just meet up with me. There’s a bar around the corner.
Me: OK.

For the sake of clarity and brevity, I’m going to combine these three conversations into one.

Him: How’re you two holding up?
Me: Same. Terribly. They’re cutting her open again right now. (breaking down) She’s fighting for her life and all I can do is watch.
Him: That’s your job. Your job is watch over her.
Me: My job is take care of her, and I’m just doing a craptastic one.
Him: (scoffing) You think most guys’d do what you do?
Me: Maybe. But I’m also wallowing in self-pity. (pause) I’m never gonna get over this, no matter how it goes. I’ll never be normal again. My boy’ll never be normal. It’s so damn selfish, I know, but that’s what I think.
Him: I’d think that too. Look, I don’t know what would happen if my wife got sick – and I never wanna think about that – but I’d like to think I’d do exactly what you did.
Me: What if I cursed her? (pause) I wonder if I shoulda let her go the day she collapsed. Saved her from all this.
Him: If you did that, you and I would be in another bar with you wondering, “Should I have tried to save her?” Look, when my mom passed, I kept wondering if there was more I could have done to save her. Even now, think about that weekly. Here, at least, you know you’ve done everything.
Me: What if it’s not enough?
Him: You’ll never know unless you do it. (motioning to the bartender) Another drink?
Me: (shaking head) Gotta get back. I can’t even self-medicate.
Him: (laughing) You will at some point. I’ll help. That you never need to worry about.

———-

We left the hospital last week. She had pneumonia, a blood clot in her leg, and an unknown blood issue that they couldn’t resolve. Since they couldn’t treat the last one, I just asked them to release us.

It’s par for course for this damn disease. Everything is an unknown in an unknown. It’s just hell.

DONTATIONS

Location: home again, but for how long?
Mood: gutted
Music: I’m fragile – I try not to be
 Subscribe!
Like this post? Tell someone about it by clicking a button below.

Completely in the dark

We can’t catch a break

Hospital Suite in Weil Cornell

Me: Doctor, do you have any new information?

Sorry again for the radio silence. We’re back in the hospital. We can’t seem to catch a break.

We went to the hospital for something relatively routine but the next thing you know, we’re in the ER for the fifth time in as many months. 13 hours of tests later they say that they have to hold her overnight.

Then overnight turns into five days. And counting.

There’s something wrong with her – above and beyond what they already know is wrong with her. What’s scary is that they don’t know what’s wrong.

Don’t really have the right words to try and express how I feel. Somehow she keeps pushing forward; I don’t know how she does it. In many ways, I feel as if I’m following her lead.

Think that even the hospital feels some pity for us. The last time we were here, we were in a cramped shared room. This time, she got a private corner suite overlooking the same river. No rhyme or reason.

We’re certainly not complaining about the nice treatment, but we’re not really able to enjoy it in any meaningful way.

What we really want is answers and clarity. The two things we can’t seem to actually get.

And so we sit here in a sun-drenched corner room in the east side of town, yet completely in the dark.

Doctor: I’m sorry. We’re still trying to understand this.
Me: You’re no closer?
Doctor: (shakes head)

DONTATIONS

Location: A beautiful room that we’d rather not be in
Mood: indescribably worried
Music: I hear in my mind. All of this music and it breaks my heart
 Subscribe!
Like this post? Tell someone about it by clicking a button below.

When tomorrow comes

Eventually, eventually

Capture
Cooper Union, John Hejduk. c. 1971.

Me: Can you do one more set of exercises?
Her: I’m so tired.

Cooper Union is a private science and art focused college here in the City that’s miraculously granted each admitted student a full-tuition scholarship since it was founded in 1859. That’s changed slightly in the past few years but it’s still impressive.

The fact is that donations have kept the school afloat for all this time and enabled it to not just provide amazing things to its students, but the world as well – they have Nobel Prize winners, Fulbright Scholars, and countless other notable alumni who benefited from this generosity.

And generosity seems to be everywhere around us, particularly this past weekend, when Alison’s relatives got together along with her high school 1friends and had a fundraiser for Alison, which raised far more money than we imagined.

Because of Alison’s trip to the emergency room last week, we weren’t able to go but watching it unfold on Facebook was another humbling and moving thing for us.

The fact is that people donate to places and things like Cooper Union because they think that their money will help, not just the place being donated to, but others as well.

Alison spent almost her entire career working to help others in the world of non-profit. I feel that part of the reason we’ve had good luck with fund-raising is because she’s positively touched so many people. It’s part of why I love her so. I want her back in the world, helping it along.

As for me, I don’t know if I contribute much beyond random musings and trivia. For example, the thing that I always found most interesting about Cooper Union is that the building was built 1853 and it was built with elevator shafts.

But safety elevators weren’t invented until 1857. The reason that Cooper Union built elevator shafts four years before they were invented was because the builders were confident that someone would eventually figure out how to build a safety elevator. They planned today for their tomorrow.

Every day, I push Alison to try to get stronger. She’s weak from the pregnancy, three brain surgeries, three emergency room visits, infections, radiation, and chemo. I should really leave her alone.

But I can’t. I won’t.

Because, like those elevator shafts, I feel that we’ll figure this out eventually and she’ll need to be strong for the struggle ahead. We need to prepare for tomorrow because I hope that tomorrow comes.

With so many people helping us, I think we can get to eventually, eventually. We owe it to everyone to keep struggling.

Me: Just one more set?
Her: OK.

2
Pampered Chef helps make stress-free meals; they’re donating 20% of sales to Alison via this link.

I wanted to take a moment to thank Marybeth W. Madlinger, Meghan McCarthy, and Heather Nerwinski for all their help with the fundraiser this past weekend.

Below are local vendors that donated time, goods, and services to the event so if you’re at all interested in any of them, please click below for more information.

Younique cosmetics and skincare is donating 15% of all sales to Alison via this link until 2016.03.04.

 

5
Jamberry nail wraps is donating 15% of all sales to Alison via this link if you mention Alison.

 

6
Em’s Pens is donating a portion of sales if you mention Alison when you order here.

 

4

 

Thanks again to everyone to went and have continued to support us since this whole hell started.

 

DONTATIONS

Location: home, of course
Mood: cautiously hopeful
Music: feeling very small underneath the universe
 Subscribe!
Like this post? Tell someone about it by clicking a button below.

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.

 

DONTATIONS

Location: heading to the east side
Mood: weak
Music: I want it real. Run away with me now
 Subscribe!
Like this post? Tell someone about it by clicking a button below.