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.

\’

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.

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.

\’

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.

\’

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.

\’

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 Nickel & 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.

 

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.

\’

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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Daring Greatly

Looking for a way out

Columbus Circle Subway Station NYC

Her: Should we do it?
Me: We might not get it. It might not work. It also might hurt you and set us back. But if it does work, it’ll give you the best shot at a normal life. 
Her: And if it doesn’t?

We had a quiet Thanksgiving. Her mom and sister were here.

Didn’t really enjoy it as much as I could have because a month earlier, got a bill for $802.12 from a hospital. Was fighting it when the hospital turned around and submitted a bill for $96,662.80 to us just before the holidays. Something else to battle.

Then again, if I had known they’d change it from $802.12 to $96,662.80, maybe I’d have just paid it.

On somewhat related note, we had another MRI this past week. Her scans are stable again; unchanged from September.

While this is good news, just like the last time, was hoping for shrinkage.

If you’ve never seen an MRI, cancer shines like a white neon light, against a background of grey. It’s unmistakable.

As always, those two bits of cancer lit up. Also as always, felt that gnawing fear in my belly.

Here’s the thing, the alternative of stability could have easily been growth. And these are much smaller bits versus the grapefruit-sized tumor in her head initially.

We’ve been doing some pretty highly experimental stuff for the past year, which might explain why the scans are stable. Now I’m pushing for her to try some even more potent stuff.

Every decision, wonder if it’s the right one and I wonder if I’ll regret not being content with what we have. The $802.12 versus the $96,662.80. Tofua versus London.

But only for a moment. We have to push against this damn thing because it’s always pushing against us.

Years ago, wrote about Teddy Roosevelt who said to always try because the person that tries:

at the worst, if he fails, at least he fails while daring, at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly,

If there’s anything she does, she tries. She dares, greatly. F__k this thing.

Me: Then we’ll find another way.
Her: (thinking) I want to try.
Me: (nodding) I knew you would. Thank you.

———-

One of my other atomic bombs went off.

I’d really like 2016 to be over already.

\’

Location: waiting for the dentist
Mood: struggling
Music: It kissed your scalp and caressed your brain
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It’s been a year; here’s what happened that night

Searching for NED

Alison pregnant

As I write this, Alison sits outside talking to the baby.

A year ago around this time, she and I excitedly hopped a cab to the hospital a few blocks away to have our first child. This was after years of disappointments. That’s a picture of her above just before the big day.

Didn’t tell you all about her being pregnant because we’d been disappointed, oh, so many times.

Words can’t really describe how it felt during that time. To say that we were excited and happy doesn’t really doesn’t do justice to amount of joy we had.

Nate’s birth was, thankfully, quiet and uneventful. But Alison was…off.

She was clumsy, which has always been my role in the relationship. She was never clumsy. But we all just attributed it to her being a first time mother.

Five short days later, she said simply, “Something’s wrong” and collapsed, shaking into a terrifying full seizure.

The ambulance came and took her away to the exact same hospital that we were just at to give birth to Nate. I went with her. After several anxious hours in the ER, the doctor said that her blood looked “great.” We breathed a sign of relief.

But, there’s something on your CAT scan.

To this day, dunno why he didn’t lead with that.

A few anxiety and tear filled days later, another young doctor pulled me into his room and he pulled up her MRIs.

Even as a lay person, I immediately knew something was wrong. The cancer looked as it were half her brain.

Me: Is she dying?
Doctor: (coughing) Well…we’re all dying, aren’t we?

I wanted to punch him in his cowardly face. We weren’t getting the most emotionally intelligent doctors here. It didn’t matter anyway. I knew the moment I saw the picture. We only had a few months.

Got up and walked over and somehow told her what it was. She didn’t believe me at first. It must be some mistake, she said. But it wasn’t.

Words can’t really describe how it felt during that time. To say that we were anxious and terrified really doesn’t do justice to the amount of heartbreak we had.

Unbelievably, I had to repeat the process several gut-wrenching times over the next few months.

Dunno how much time I spent with her. Could have been an hour. Could have been thirty.

Then I told her that I had to go to the bathroom. Walked out the door and asked a nurse where the nearest one was.

Out the door to the right, and then another right. It’ll be on your left.

Thanked her, made a right, another right, and stepped into the bathroom on the left. Walked into the stall, and sat there by myself and said, “What the f___?”

Dunno how much time I spent there. Could have been a minute. Could have been thirty.

Afterward, got up, walked over to the sink, and told myself that I could do this. That she could do this. Splashed cold water on myself to make sure it wasn’t all a bad dream and I needed to wake up. It wasn’t. Repeated it just in case.

Nope, still in this goddamn hospital. So I went out, made a right, then a left, and then sat with her for another week in that goddamn hospital.

Alison cried every hour after that. I cried every night. At the time, it was the worst period of my life. Didn’t realize that there could be – and was – far worse to come. Said it before, there’s always more room for down (and the link before this comment is to an entry where we lost yet another baby).

Yet things have somehow improved, slightly. At least to the point where Alison is stable, for now. For some, this would be enough but it’s not for me. Like Bligh, I want us to go home.

Wish we could go back into time before she was brittle, or to the future, to see how she and the boy are.

Brain cancer is something so deadly that, unlike other cancers, there’s no such thing as remission. Instead, the best you can hope for is something they call NED: No Evidence of Disease.

We’re not there. There’re two small pieces of tumor still in her head. Like bullet fragments inching towards her soul. I’ll never sleep soundly again until they’re gone. Until we see NED. Even then, I’ll always be uneasy.

But the doctors didn’t think that she was going to last more than a few months. So we’re slightly hopeful.

And, as I’ve done throughout my life, I’ll struggle with whether or not the hope is a good or bad thing. And we wait for NED.

Her: (a year ago today, crying) Will I die?
Me: I won’t lie to you; it’s not good. But I won’t let you. Be strong, ok? We got a kid now. He needs you.
Her: (through tears) It’s not fair. I only had a few days with him.
Me: You’re right, it’s not fair. But you’ll get more days. I promise. I’ll do whatever it takes for you to get more days.

Nate just a few seconds old

\’

Location: home, waiting for more tests
Mood: pensive
Music: build time machines to go and get us back, back before we were brittle
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Halloween 2016

Alison and the kid say Hello again

Me, Alison, and the kid
The last time I posted a pic of Alison, all hell broke loose a few days later. But we can’t live in fear, can we?

Me: The past few days have been pretty good, all things considered…
Her: That’s good to hear.
Me: …so don’t screw it up.

———-

A year ago, around this time, Alison was close to nine months pregnant and super excited for this (2016) Halloween to happen. I remember that we discussed all the possible things we might do.

She never thought then, of course, that she’d be battling for her life for most of 2016.

Man, who’d ever think such a thing?

Anywho, woke her up yesterday and showed her the kid as Batman and she smiled. Alison’s mother and I put her in a Batgirl shirt and I put on a Nightwing shirt, for those of you that know what that means.

Then we took the picture you see above.

Her best friend stopped by, unexpectedly, as well so they chatted like old times.

It wasn’t the Halloween we had hoped for last year. But it wasn’t all bad. Any day she’s happy’s a good day.

Her: (laughing) I’ll do my best.

Batman hears a call for help

Commissioner Gordon: What is it?
Batman: Danger, Commissioner. Danger. (leaps)

The kid, sleeping

Commissioner: Did you just fall down?
Batman: ….No

\’

Location: home
Mood: busy
Music: there’s nothing else in our lives so critical, as this little home
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