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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I already promised her

She is my person

Alison McCarthy on the Brooklyn Bridge

My birthdays have sucked lately.

We went in for an emergency MRI on Friday, despite all our plans.

The cancer is growing stronger and bigger while she’s growing weaker and sicker.

And I die a little every minute.

That picture above was taken after my buddy’s wedding years ago. Knew at that moment, she was my person.

That she loves me as deeply as she does is worth more than anything you might imagine. And I love her so. I would do anything to take this from her.

I would do anything.

For those of you that have read me for years, you know I struggle with depression and dark thoughts. I struggle now.

The people in my life know that too. So I called my mom last night.

Her: …and you? Will you be ok?
Me: No. But I’m not going to hurt myself if that’s what you’re asking.
Her: I am.
Me: I have to raise our son. I won’t let him grow up alone.
Her: Promise me.
Me: Mom, I already promised her. 

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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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If only some other country built a Great Wall

Then we’d know how it works out


Still waiting on news with Alison so I thought I’d write yet another political post, which I have rarely done in the past but these are different times.

All this talk about a wall reminds me of something I told you years ago that I’ll retell now.

For thousands of years, China was invaded by the north by:

  • The Xiongnu (aka Attila the Hun) between 133 BC to 89 AD.
  • The Jurchen between 960–1279AD, and they won (!) ruling China for over a century.
  • The Manchus, who invaded from the north and controlled China for over three centuries, 1644 to 1912.

It goes on.

In any case, some bright-eyed fella hit on the idea to build a wall. And for the next 1,800 years, they did just that at the cost of $13 billion to $65 billion. Finishing it at 13,170 miles, which is over five times the distance from NYC to LA.

When it was done, they kept an eye on that wall.

Then in 1839, the Opium Wars started – in the south – by a buncha white dudes. It never entered China’s imagination that (a) white dudes from (b) the south might try to invade. Cause it never happened before.

And guess what, they had no significant army, no significant navy, and no firepower of any consequence for the task to come. Because when you spend all your scratch on something to fix yesterday’s problem, when tomorrow’s problem comes, you’re in a lotta trouble.

The builders of the wall never had the imagination to think they could be invaded from anywhere but the north, and the arrogance to think that if they couldn’t imagine it, no one else could.

China paid for their myopia: Once the new invaders came, they sliced the country up into a buncha little colonies that only started to be sorted out a hundred years  – and millions of dead Chinese – later, with WWII, the Korean War, the Vietnam war, and whatever this insanity is with North Korea.

It’s still being sorted out as China pushes into the South China Sea.

My point is that China trained itself to respond to yesterday’s threat with yesterday’s technology, blowing out its funds while doing it.

A great wall was easily defeated in 1839. 178 years later, a fool is going to try the same thing again, expecting a different result.

 

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Button, Button

Our experience on Obamacare


When I was a kid in the 80s, they brought back The Twilight Zone.

One of the stories, called Button, Button, taught me a valuable lesson about empathy; so much so that it stayed with me for some 30 years.

It was about a couple that was given a box by a stranger. On the box was a button. If they pressed the button, they’d get $200,000 but someone – whom they didn’t know – would die.

After a lotta struggle, the wife ultimately pushes the button. The next day, the stranger returns, gives them $200,000 and takes the box back.

When they ask what happens next, the stranger says that he’ll give the box, and the same offer, to someone else – someone that they don’t know.

No one’s asked me but I’m sure people are wondering: “What are you doing with all the money you’ve raised?” It’s only fair I answer it.

Originally, we weren’t sure how much our original insurance was going to pay towards Alison’s treatment. Her cancer was on the aggressive side of aggressive. The only “lucky” thing about our situation was that we were already on the platinum level of Obamacare, which essentially meant that we pay 10% and insurance pays 90%.

It has been a godsend to us. At last count, Alison’s 2016 cost of care was around $2.8 million dollars. Without the Affordable Care Act, Nathan and I would be bankrupt and Alison would be dead. It’s that simple.

But we’re not and she’s not, thanks to the ACA and everyone’s generosity.

With what’s left of our money, we’re paying for normal expenses – mortgage, food, bills – some experimental drugs, physical and occupational therapy, and exploring future options, like a potential cancer vaccine in Germany.

Mainly, though, we’re saving up to see what happens with the ACA. So we’re watching the news daily to see what unfolds.

Lately, I’ve been reading a lot about #Trump Regrets and how so many people are regretting voting for Trump because they realize that things like their meals and lives are jeopardy.

Yet, it’s hard for me to feel very sorry for them.

It’s like the box. They knew someone would suffer. That someone – like Alison – might die. And they were ok with that, until they realized that the person that would die might be them.

Her: What will they do if they lose their insurance?
Me: They’ll die the same way they lived: Never knowing that when you save someone else, you save yourself. It’s a shame for a million reasons.

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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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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

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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
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One more year

Waiting for the next island

Her: I’m tired of being sick and in pain. What’s the point? To live a few more days?
Me: To stay alive for one more year.

For the past few months, Alison’s been on three treatments to fight this damn thing. Last Monday, we lost all three treatments.

  • One treatment is called Optune and involves an array of magnets that she wears on her head 24/7. It sounds crazy but was just approved in October 2015 to fight her type of cancer.
  • The second is an experimental treatment that’s not approved for her cancer but it’s similar to the treatment that President Carter used. We just started it last week because of her new growth.
  • The third is a highly experimental treatment that’s not approved for any cancer but passed Phase 1 and 2 clinical trials in Brazil. I managed to find a supplier to agree to get me some.

The first two we lost because our insurance changed. The third we lost because FDA rules changed.

It was a difficult Monday, to say the least. Yet, in some ways, Alison seemed relieved. She was tired. Tired of the struggle. Tired of the pain. And I couldn’t blame her.

But later on in the week, Optune told us to appeal the decision and if we did that, they would let us continue to use the device for a fraction of the $21,000 per month it costs (you read that right). So we got that back.

Then our doctor called the insurance company and asked for a waiver for the second treatment. He called us late in the week to come in for another infusion because it had been approved. I’ll update this entry this week if it happens. So that’s back too.

Finally, a young woman I had been corresponding with about the third treatment told me that her husband wasn’t doing well. So she was going to send me two months of the drug. It just arrived.

More on that in another entry as it deserves more than such a brief mention here.

So I told Alison that all I wanted was for her to make another year. Because we didn’t know what the future holds. On Monday, all seemed lost. By Friday, we were back in business.

And, like I said, Optune was just approved October 2015. Who knows what will happen October 2017? We just have to go a little farther.

Me: Remember that story I told you about the 12,000 miles? We just have to keep going until we see another island. I’m just asking you to hang on for a little while longer.
Her: I’m so tired.
Me: Just a little while longer. I’ll be with you the whole time.


My gym sent her those flowers above.

It was the perfect cheery thing for an otherwise un-cheery week.

 

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Location: still adrift, but with new supplies
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My most prideful thing

Thank you

This has been possibly the worst week we’ve had in a while. Which says a lot.

A routine visit to the doctor indicated new growth. So what was supposed to be a quick 30-minute checkup, turned into a five-hour ordeal of needles – it’s always a f___ing boatload of needles – fluids, and drugs.

What’s even crazier is that Alison kept apologizing to me.

She’s so sorry that we had to go through this. So sorry that everything was taking so much time. So sorry that there was so much fear and uncertainty in our lives.

Wanted to give her a hug but couldn’t because there were too many damn wires and tubes everywhere.

I’ve always said that the truth is a powerful thing. It’s comforting to get some truth in a world of lies and half-truths, particularly now.

So, to comfort her, I waited until we were alone to give her a hug and then tell her the purest true thing I could.

Me: Please stop apologizing.
Her: I just feel so bad.
Me: Don’t. Everyone wants their life to mean something. To have some greater purpose. I want you to know that helping you in whatever way I can is the most noble and good thing I’ve ever done in my otherwise meaningless life. I’ve never done anything remotely as important and meaningful as this. It is my most prideful thing. If the high point of my life is that I’ve taken good care of you and the kid, I’d consider my life a complete success. For that, I am deeply, deeply grateful. I love you and the boy more than a fat kid loves cake. Stop apologizing. Thank you for giving me my most prideful thing.
Her: (nodding) Thank you too.

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