I’m here

Our first date, revisited


We went on our first date together almost nine years ago today.

Went on other dates that week, but I don’t remember them. I remember Alison’s in particular because she was late.

She emailed me to tell me she was going to be late because she was working to get a generator for a village in Africa – which wasn’t an excuse I’d ever heard before.

She worked at Helen Keller, you see. She spent almost her entire professional career trying to help other people.

She set herself apart from the beginning.

With her education, she coulda gone anywhere. But instead she worked long hours for little pay trying to help others. She was always flying to Africa or Washington to try and make a difference.

She made such a difference in my life as well.

Just one of a million reasons why the world and I are better because she was in it.

That night…

Her: Hey, I’m here.
Me: (laughing) You were getting a generator?
Her: Yes – I was waiting for the donor to confirm.
Me: Did you get it?
Her: (beaming) Yep!
Me: Great, let’s drink to that.
Her: You’ll drink to anything.
Me: (nodding) This is true.

Last week…

Me: (waking up in the dark) Are you ok?
Her: (weakly opens and closes her right hand)
Me: (takes her right hand and sits beside her) I’m here.
Her: (squeezes my hand)
Me: I’m here.
Her: (squeezes my hand again)

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Location: at the foot of her bed
Mood: numb
Music: Don’t like reality, it’s way too clear to me
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Fancy meeting you here

It was supposed to be someone else

When I ran into my wife outside years ago and asked if I could take her picture.

Years ago…

Her: (smiling) Hey!
Me: Hey, pretty lady! Fancy meeting you here.

Every once in a while, I’ll see someone that looks a little like Alison walking outside. She was always perfectly put together.

Some of the happiest moments in my entire life was when I bumped into her and she’d smile the most beautiful smile at me.

That that will never happen again is enough to make me cry in a subway station by my lonesome. It’s so goddamn painful.


Alison’s been sleeping all day and night. She’s only awake for a few minutes a day now.

On the other hand, I’ve not been getting any sleep. The unfairness of it all keeps me up.

The thing is that horrifies me is what should horrify you: It wasn’t supposed to be us.

It’s never supposed to be us. It’s always supposed to be someone else.

  • I wanted three kids, she wanted two.
  • I wanted to stay in Manhattan, she wanted to live with green grass and shade.

That was pretty much the extent of our major disagreements.

We were supposed to have time to work those things out, to have a life together. She was supposed to finally be able to have her own family.

She was athletic. She ran almost every day. Played soccer for years. She ate healthfully. Took care of herself. Didn’t smoke. Rarely drank.

It’s never supposed to be us.

It’s always supposed to be someone else.

And now – like that story Button, Button – we’ve become your someone else.

Me: (quietly, by her bed) Hey, pretty lady. Fancy meeting you here.
Her: …
Me: (nodding)

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Location: at the foot of her bed
Mood: still broken
Music: been searching a long time for someone exactly like you
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Mother’s Day 2017

Thank you Mrs. McCarthy


Went to yet another hospital ER room this past weekend – and it wasn’t even for Alison. One of my other two atomic bombs went off again.

This was on top of another indescribable weekend. There’s not much to do but bear it.

I’d like to say that this was Alison’s second Mother’s Day as a mother but it really wasn’t. She barely registered anything.

Bought her this card months ago, hoping to give it to her. Never got a chance to. Doesn’t make it any less true though.

Alison is nothing if not extra-ordinary. Sometimes, though, I wish she was just ordinary. Perhaps then, she’d be able to stay with me.

I’d give anything if she could just stay.

Speaking of extra-ordinary – I haven’t really mentioned it because I try to keep as much of the lives of those around me as private as possible – I’d be remiss if I didn’t tell you that, during the past 18 months, Alison’s mother has been here with me almost every single day and night to take care of her and the kid.

She came here with four days worth of clothes right when Alison gave birth so that she could help out for the first few days. And then everything went to hell.

And she just stayed. There is no way that I could have possibly taken care of Alison and Nate without her. And she has been far stronger than I, which humbles me.

Whereas my pain is deep, I cannot imagine the pain of a mother watching his/her child go through what Alison has gone through. Wouldn’t want to. But she has, somehow. Stoically.

Alison’s parents are a major reason I married her.

Cause, when you marry someone, you don’t just marry them, you marry their family. And these are people I’m truly honored to call family.

Despite my losing so much money and being as old and broken as I am, they have never been anything but wonderful to me.

While this may reflect badly on their own parenting skills, I’ll take what I can get.

When Alison and I got married, I promised them that she would be safe. Part of why I’m so heartbroken is because I feel I’ve failed them. Yet they never say anything negative about anything I’ve done, even though I constantly doubt every decision I’ve made.

Alison’s mother asked if I would keep them in Nate’s life in the future, a question I found very strange.

Me: Are you serious? You’re the only family he’s known for the past 18 months.
Her mother: Things change over time.
Me: (shaking head) I want Nate to know his mother. By knowing you two, he’ll know her. That’s what she’d want. That’s what I want.

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Location: at the foot of her bed
Mood: so very broken
Music: I’m fragile. I try not to be
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Alison Music: Her Diamonds

Can’t take no more


Essentially, the entirety of this song lays out what last month has been like.

Can usually make it to the part that goes: “She tried her best and now she can’t win” before I have to stop playing it.

Everything we do now, we do with the goals of (a) providing Alison some comfort and (b) fulfilling what she would want most if she couldn’t make it.

For the latter, it’s to make sure that Nate is going to be ok.

As I mentioned to you in the last entry, between the theft, the fertility treatments, and the past 18 months of expenses, the donations you’ve provided for her will also help me raise him the way she would have wanted.

That’s all we can do now.

She’s been sleeping almost all day these days. So we – her mother and I – sit and wait with her.

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Location: at the foot of her bed
Mood: dazed
Music: I sit down and I cry too, but don’t let her see
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Cary, Carey, Kari

Some more of the story

A shocking number of my friends and family have never met Alison, or met her only once.

We gave a million reasons why. But the whole story starts like this: A decade ago, a family friend stole my life savings.

When I met Alison, was still struggling to get my life back together again. But she loved me anyway.

She could have had anyone and she chose me.

That’s part of why I was so busy. Was trying to make back 30 years of savings first. But she was busy too.

After we got married, we immediately tried to start a family. And failed. Repeatedly.

Ultimately, we went to several specialists and spent a huge chunk of our savings, including what I had saved up since the theft, trying to have a kid.

She was essentially pregnant for four years straight. And she lost six pregnancies. Six.

People are often crushed with one. You cannot imagine the heartache that comes with six. In a row.

Four were miscarriages. Two were ectopics. If a miscarriage is traumatic, an ectopic is devastating. With an ectopic, you’re in the horrifying position of praying for a miscarriage.

This is after sticking herself with needles every single goddamn night for years.

But it got worse. As I said in an entry I wrote about our very last loss, there’s always room for more down. That loss almost destroyed us because we heard a strong heartbeat only to lose it a few days later.

And the close friend in this entry was Alison. She had to have surgery due to another failed pregnancy.

Whenever we did go out, people would inevitably ask, “Are you planning on having kids?” And what do you say to that? When she actually was pregnant and she didn’t drink, people would always ask annoying questions.

We were tired of it all. So we either turned down all invitations or she just stayed home and I went out. This was for four years.

It’s funny but I have three good friends named Cary, Carey, and Kari; one has never met her and the others only met her once or twice in a all these years.

We never told anyone. Because we just kept hoping that someday, we’d have a family.

When she finally gave birth to Nate, we thought it was over. All the heartbreak, fear, dashed hopes, and loneliness. What we got instead was much, much worse. So much worse than our worst nightmares.

She deserved so much better than this. Her birthday is in a few days.

You wanna know the craziest thing? That’s not even everything. There’s more. But I don’t even think our story up to now is believable.

Her: We were finally supposed to get a good Christmas.
Me: (quietly) I know. I’m so sorry.

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Location: at the foot of her bed
Mood: Guess
Music: Go to the ends of the Earth for you
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Are you a religious man?

I’d rather it be the other way around

New York City church
Alison’s more confused and vomiting constantly. We decided to keep her home for as long as possible.

Oddly, ran into someone from the hospital the other day while I was out running an errand.

Him: Mr. McCarthy, how is your wife?
Me: The same. (thinking) Worse.
Him: (pause) I’m sorry. We talk about you two, you know.
Me: You’re all surprised she’s still alive.
Him: (sighing) Yes, that’s true. But also that you both keep fighting.
Me: She keeps fighting. I’m just support staff.
Him: I’ve been doing this over 20 years. Seen a lot of men just put their wives into hospice and move on.
Me: Why would anyone marry anyone if they weren’t in for the full deal?
Him: I dunno, people do. (later) Are you a religious man?
Me: Once thought about being a pastor. A fleeting thought. But I went to and volunteered for church for years.
Him: So you believe in God. You have that to lean on.
Me: I do believe in God, this is true. (pause) I just don’t think he likes my family very much.
Him: (long pause) I don’t know what to say about that.
Me: Nothing to say. My wife’s not even the only one dying. I had two others in my family with terminal illnesses. And that’s not even everything.
Him: (sighing) It’s like Job. (hopefully) He survived.
Me: Yeah. His family didn’t. I’d rather it be other way around. I’m sure he woulda too.

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Location: with my family
Mood: gutted
Music: Stay alive, here we go
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A distinction without a difference

Living in willful ignorance

Hospital Scheduling Woman: April or May?

We had some more bad news a month ago. Didn’t tell you about it because we needed to process it all.

They found yet another spot on her MRI. The doc told us to wait and see if it’s actually cancer or if it’s the treatments doing their thing.

For those of you keeping score, that’s four spots of cancer: Two confirmed from the original cancer, one from January, and this new one they found last month.

We had the option of another MRI this past Monday but we decided to wait until May.

There are a number of things that the people that know me in real life hear me constantly say.

Such as: That’s a distinction without a difference.

This is a both a legal term and a logical fallacy where someone points something out that has no bearing on the issue at hand.

For example, right now, everyone’s talking about the United Airlines passenger that was violently dragged off a plane.

Now some news outlets are saying he had a criminal past. But this is a distinction without a difference; it has no bearing on the fact that he was violently dragged off a plane.

Suppose that’s another post for another time.

Getting back to our situation, I’m always anxious these days. I wanna know what’s going on in Alison’s head. Literally.

Yet, knowing – at this point – is worse than not knowing.

Because we might change course when we should give all the things we’re doing time to work.

And, really, we don’t have too many options right now. Knowing if it’s more cancer won’t change the job that needs to be done. So we wait and hope.

Me: May.
Hospital Scheduling Woman: OK. (pause) Are you sure?
Me: No. But that’s a distinction without a difference. We’ll come in May.

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Location: Anxiety City
Mood: anxious
Music: Every one a tragedy
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Dead reckoning

Fools and fanatics


Going back to my maritime analogy, when the nights were cloudy and sailors didn’t have stars to figure out where they were going, they used deductive reasoning to essentially say:

If I know I was there on Tuesday traveling X knots per hour, and today is Wednesday, then I must be here.

They didn’t call this deductive reasoning, though, they called it deductive reckoning, which was shortened to ded reckoning, which morphed into dead reckoning.

And it’s apt cause the problem with dead reckoning is accumulating error: If I’m wrong about any assumption, that error is magnified the further you travel in time and space. You think you’re heading to safe shores and instead you’re adrift, thousands of miles off course.

We got good news last Monday that was taken away from us on Friday – the doc missed something. Our good news never ends up being good for very long.

So we’re back to trying to figure out what to do next.

Which means that I stay up at night, thinking of all our possible pasts, trying to determine the cascading consequences of my actions. Or inaction.

This fella named Bertrand Russell said that, “The whole problem with the world is that fools and fanatics are always so certain of themselves, and wiser people so full of doubts.”

Not that I’m so wise, but it’s come to this, where I’m envious of fools and their ability to sleep. But that’s for me to deal with.

Her: Are you ok?
Me: Of course. You’re home. The kid is walking. And I had a gyro for lunch. What else could a fella want?
Her: (teasing) Me to be cancer free?
Me: Well, there is that.

 


 

Many thanks again to my friends Ricky and Kathy, who – with their friends and mine – managed to raise $12,000 for Alison with their dinner fundraiser.

Thank goodness for the good souls.

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Location: off to the gym to try and forget for a bit
Mood: tired
Music: Thank goodness for the good souls that make life better
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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.

 

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Location: Home again
Mood: cautiously hopeful
Music: say honestly you won’t give up on me, and I shall believe
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Whales, squid, China, and monsters

May you never see monsters

Display of sperm whale and giant squid battling in the Museum of Natural History

This blogger wrote an interesting fact about giant squid, which are monsters that average about 42 feet in length. Their biggest enemy is the sperm whale, another monster that averages 52 feet in length.

Giant squid are considered commonplace in the oceans yet if you go to wikipedia, there’re almost no pictures. Because none have ever been caught alive. They’ve almost never been seen, even though they’re, evidently, all over the place.

  • There are 360,000 sperm whales.
  • Assume one eats one giant squid a month, that’s 360,000 giant squid eaten each month.
  • That’s 12,000 eaten each day. (360,000/30=12,000)
  • That’s 500 each hour. (12,000/24=500)
  • That’s 8.3 eaten each minute. (500/60=8.3)
  • That’s about one every 7 seconds.

One a month is a really conservative figure: if it’s one per week, that number jumps to one squid being eaten every  1.7 seconds. But scientists, examining the bellies of caught sperm whales, think even that is too low.

They think that they’re eating between 3-8 per day. If that’s the case, as the blogger noted, that means that there are over 3 million – over 3.6 million, really – of these life-and-death battles between these two giant monsters happening every day.

Hold that thought.

You know, years ago when I worked in China, I remember telling this young executive that I needed to call my parents to give them my opinion on a second family car to replace my mom’s old one.

Him: (rolling eyes) You’re telling me that your family has two cars? Each of your parents have a car?
Me: (puzzled) Yeah, it’s pretty common. Most families have two cars. I have a car too.
Him: (scoffing) You have THREE cars?! That’s impossible. (sarcastically) Everyone in America must be a millionaire then.

Speaking of China, when my sister was there teaching English, she said that some parents wanted their kids pulled from class because they didn’t want their kids learning English from a Chinese person.

Her: (confused) But I grew up in America. It’s my first language.
Them: (ignoring her) No, I want my children learning from an American.
Her: But I’m an American!

Not to pick on just China, just recently, I told a relative that I didn’t eat for three months as a teenager and lost about 60 pounds. She too scoffed that it was impossible.

Was thinking about alla these stories the other day as Alison strapped a five-pound weight onto her weak leg and managed to lift it ten times, which is something that, if you knew what she has been through, is as impossible to me as those stories above were to those people.

There are people are fighting these impossible and monstrous battles every day; while it’s commonplace to them, it’s alien to us. Alison struggles to stand, to eat, to have any semblance of a normal life.

It’s something that one can’t fully comprehend unless one has experienced it.

And good god, I hope you never do. I hope you never battle monsters and I hope you never experience the hell that is a stage four cancer. I hope you never experience all-too-possible impossible horror.

That’s my Christmas wish to you: May you never see monsters.

Me: Can you do one more?
Her: I’ll try.

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Location: in front of two five-pound weights
Mood: hoping
Music: I’m always pretty happy when I’m just kicking back with you
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