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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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.

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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

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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

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Location: home
Mood: busy
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No one ever said it would be this hard

Thank you for setting her apart

Two empty chairs outside NYC restaurant

Alison’s been pretty stoic about everything that’s happened. Every once in a while, though, the gravity of the situation hits her – and us.

After dinner the other day, The Scientist came on and when they got to the part that went:

Tell me you love me
Come back and haunt me

she started to cry.

Her: It’s so sad.
Me: “Come back and haunt me?”
Her: (thinking) Yes, that is sad. I try not to think about things like that. But that’s not the line that makes me so sad. It’s the one that goes, “Nobody said it was easy. No one ever said it would be this hard.” (pause) I can’t believe it’s been so hard.
Me: As long as we have 1% of 1%, we’ll keep trying.
Her: I will. I’ll always fight this.

Years ago, told you that I met a girl and set her apart from everyone else in the world. That’s what happens when you come across something or someone special.

That girl Annabel from my last entry wrote me to tell me that she hosted a fundraiser at her home to help Alison and sent us a – wholly unexpected – check. Below is a picture from the fundraiser. I only personally know one person, Annabel. And Alison knows no one.

But each of these strangers, like so many others, have gone far outta their way to help us.

There are 880,000 words in the English language. And yet there are no words to adequately express my gratitude that, in this past horrifying year, so many people have set Alison apart as well.

Suppose I’ll just have to settle for thank you, as always, however inadequate it feels to me.

Fundraiser for Alison

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Comment faire?

How do we do it?

Alison in hospital

I was terrible French student – no fault of Mrs. Reynolds. Took it mainly because there was a pretty girl in the class. Story of my life, yeah?

When I could actually speak it (and I no longer can), there was one song I enjoyed above all others, the Les Miserables song, Demain.

It starts like this, with the rather inelegant translation, following:

Comment faire
Verrai-je un jour la fin de ce calvaire
Vivrons-nous libres enfin et sans mystère
Sans avoir à trembler sans cesse

How do we do it?
Will I see one day the end of this quest?
Will we finally live free and without mystery?
Without having to constantly be afraid?

And ends like this:

il me faut protéger sa vie
demain nous partons loin d’ici
Demain sera pour tous un lendemain
qui ne peut pas mentir
c’est demain que chancun connaîtra son destin
demain . . . demain . . . demain.

I must protect her life
Tomorrow we go far away from here
Tomorrow will be a new day
that will be the truth
It’s tomorrow that each will know his/her destiny
Tomorrow . . . tomorrow . . . tomorrow.

We came back from the hospital earlier this week. Just like with the other extended emergency room stay, they were unable to figure out why her lab results were so bad.

Also like before, we left because her staying there was just making her worse. The surgery that we were hoping would fix a few things, didn’t. But I’m still glad we did it because, cosmetically, it made her look like the old her. So that’s something positive.

And now, like before and always, we try to figure how how we do everything we need to do to make it to tomorrow.

Me: How are you feeling?
Her: Tired. But glad to be home.
Me: Me too.

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Mood: tired
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One more surgery down, one more cancelled

Just waiting for some improvement

Wife at the hospital surrounded by doctors.

She survived the last surgery a-ok. But, like always, it’s the recovery that eludes us.

She was actually scheduled for surgery eight today but it was cancelled at the last minute again because the doc wanted to give the last surgery a little more time.

The problem is that it’s been over a week and there’s been no change. The last, 7th, surgery was supposed to fix something with her but it didn’t. And this latest surgery was cancelled. So we continue to wait.

She sleeps most of the time. I sit with her most days in the hospital. She hasn’t improved at all so we’re still in the ICU, which is upsetting. Yet she continues to inspire me.

In the meanwhile, the boy has started to crawl. And neither his mother nor I were around to see it. It’s the little things we miss that hurt the most, I think.

Did find a moment to bring him to see his grandparents out in Queens over the weekend. That was the one bright spot in an otherwise dark week.

Dad: He looks just like you when you were a kid.
Me: Thanks.
Dad: So fat. Soooooo fat. Look at those legs!
Me: Thanks, dad.

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Just a cruel tease

Another surgery

Before all this hell
Before all this hell

Me: Can I tell you a joke?
Her: (nods)

Alison’s not doing great. Thought we had made a major turn for the better the other day but it was just a cruel tease.

She’s sleeping all the time again and can’t seem to keep any food down. She lost several pounds that we struggled to put on. The doctors want to operate on her yet again – and the expectation is that it means a minimum of three months that we can’t do any of the treatments we’ve been doing that might have caused some of the cancer shrinkage in the first place.

After a lot of soul searching, we’re back in the hospital at some point this month for surgery number seven.

Would do anything to take this burden from her.

It’s maddening. Every time we think we’re moving forward, we’re reminded of just what a beast this cancer is.

There’s one treatment left that we can still do while we wait for this surgery. It involves her breathing in a medication that burns like hell through a mask. Four times a day. So I try to help her pass the time as best I can.

Me: OK, so a teacher asked her class to make sentences using the word “beans.” One student says, “My father grows beans.” Another said, “I eat beans.” Then teacher turned to a little girl who thought for a second and said: “We’re all human beans.”
Her: (smiles)
Me: Well, if nothing else, you can’t divorce me.
Her: (through mask) I would never.
Me: Good. (quietly) Don’t ever leave me.

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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.

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