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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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

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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
Music: there’s nothing else in our lives so critical, as this little home
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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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Location: home, making food
Mood: sick
Music: You don’t know how lovely you are
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Look for the helpers

Thanks for helping

Bethesda Terrace and Fountain

Went on a kinda roadtrip this past weekend. Was the first time I’d been out of New York City since this entire thing went down with Alison.

We needed a washer/dryer, you see. The laundrymat around the way just closed and having a kid and a sick wife means laundry. Lots of laundry.

A woman was selling her ten-month old set out in NJ but I’d no means of getting to her. So I asked on FB if there was anyone I could hire to move it for me.

A friend-of-a-friend named Phil immediately said he’d pick me and bring me over. A few hours later, was in the car with a relative stranger on the way to another stranger’s house in New Jersey to either pick up a washer/dryer or get stabbed. It was the former, luckily.

Phil helped me haul this monstrosity out of this lady’s house. As we struggled in the rain to get it into Phil’s car, the lady started to cry. She was moving cause she had to, not cause she wanted to and couldn’t take this thing with her.

I told her not to cry, that she’d be ok. She smiled and told me I would be as well. Let’s hope we don’t make liars of each other.

After a slow drive back into the city, Phil and a neighbor helped me haul this thing into my home. Tried stuffing $100 into Phil’s glove compartment but he wouldn’t take it and just took off with a smile and a wave.

Spent the rest of the day moving it into place with the help of some other neighbors and hooking the whole thing up. Was late when it was all over.

Fred Rogers used to tell children that, when they were frightened, to “Look for the helpers.”

Alison’s cancer has been many things, all of which were anxiety producing.

And anxiety is just a fancy word for fear.

But the helpers have made it better – friends, strangers, and family.

You know, this girl named Annabel shows up at my doorstep every Wednesday with some insanely good homemade food she cooks. And a fella named Anthony brings food from his restaurant every Thursday. And then there’s a girl named Kristin comes over a couple of times a week to do PT with Alison. They were strangers to us.

Plus we have friends like Rain, who just built me something to make the washer work better and Alison’s best friend Lacey, who sends someone to watch the kid almost every day.

It’s all been frightening. But the helpers make it less so.

Her: Who was that?
Me: Someone who wanted to help us.
Her: That’s really nice of him.
Me: It is. It really is. Get some rest.

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Location: last weekend, the West Side Highway going 10 mph
Mood: slightly less anxious
Music: I fight. Now I’m away
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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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Location: home, after two weeks
Mood: tired
Music: mon sang se glace dans mes veines
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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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Location: her bedside
Mood: weathered
Music: Command me to be well
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Dreaming of a Holiday in Spain

Surgery seven

Admission Ticket for The Met
She went to the ER for the eleventh time last week and has been there ever since.

Yesterday, she had a surgery to replace the titanium mesh that was put on way back in Dec to replace her skull. Essentially, it was failing, causing her to have a lot of nausea and more weight loss.

The mesh was always supposed to be temporary; when Alison collapsed, she was only an hour from death. They had to remove her skull to keep the pressure from killing her. The mesh was put in place so that she didn’t have to have the further indignity of having to wear a helmet all the time.

But she didn’t look like her. It looked as if someone had taken a swing at her with a baseball bat. In time, we all got used to it but I did think that, if nothing else, after this surgery, it would be nice to see more of the old her.

Couldn’t handle the thought of her going through yet another surgery so I walked outta the hospital and ended up at the Met.

The last time I was there, was single, childless, and not sleeping. Now, I’m married, with a kid, and not sleeping.

And the last museum I went to was with Alison.

Sighed, shelled out a few bucks for a ticket, and kinda just walked around in a daze.

Arms and Armor at the Met

Ended up at the Arms and Armor section. Never told you exactly what type of fencing I do, did I?

It’s Filipino fencing with a dash of Spanish rapier and dagger. Thought about our last trip to Spain. We always said that we’d take a trip to Toledo in Spain, the home of Spain’s greatest swordsmiths.

As you see, everything reminded me of her so I left and walked back. Didn’t get a call about the operation so I assumed that no news was good news.

Suit of Armor at the Met

When I got back, they told me that the operation was a success although that old blood issue has cropped up again with another new issue.

They’re going to keep her for a while to make sure that everything is ok. Of course, this means that I can’t do any of the experimental cancer treatments we’ve been doing.

So we wait. Like always.

And I dream of a holiday in Spain with her and my son.

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Location: not Spain
Mood: worried
Music: we could simply pack our bags and catch a plane to Barcelona ’cause this city’s a drag
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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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Location: this side of hell
Mood: crushed
Music: it’s not so tragic, if I don’t look down
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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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Location: the @#$@##@$@# hospital again
Mood: conflicted
Music: This is the joy that’s seldom spread
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