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.

DONTATIONS

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.

DONTATIONS

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.

DONTATIONS

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.

DONTATIONS

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.

DONTATIONS

Location: the @#$@##@$@# hospital again
Mood: conflicted
Music: This is the joy that’s seldom spread
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On the aggressive side of aggressive

30 or 12,000?

Alison and the Sea

Me: What’s wrong?
Her: I had a dream, I think, that I had a seizure. Or it really happened. I don’t know. I don’t know what’s real.
Me: Your mind is playing tricks on you.

We live our lives through stories. My hope is that some of my stories stay with you, in some way.

When I was a kid, read about the Mutiny on the Bounty and a portion of that story stayed with me. After Fletcher Christian took over the ship, he tossed Captain Bligh into a small boat. Christian assumed that Bligh would head straight to an island called Tofua, about 30 miles away and, to this end, gave them all five days worth of supplies.

But Bligh had a pretty audacious plan.

He was going to travel 4,000 miles – that’s the 500 miles more than the distance from New York City to London – in an open boat with five days worth of food and water.

Blight and his men were going to make it home or die trying.

So from April 28, 1789 they sailed in open ocean waters, each eating an ounce of food and half-a-cup of water a day. 47 days later, on June 14, 1789, they made it to safe to shore.

It wasn’t until March 14, 1790 that Bligh made it home to England. All told, they traveled 12,000 miles by ship.

With a glioblastoma, the most you can hope for is a few months.

I don’t tell you everything that goes on. Some of it is too horrifying to repeat. Like in this entry, didn’t mention that the doc said something I’ll never forget:

Glioblastomas are aggressive cancers. And her particular glioblastoma is on the aggressive side of aggressive. (pause) If you want to make her comfortable, I’ll do everything I can to help.

As soon as I heard him say that, immediately thought of Bligh. The doc was saying she could only make it the 30 miles to Tofua.

And my next thought was, “F___ that. We’re going home.”

That’s when I decided to start looking for another hospital. Because I didn’t want that kind of help. I didn’t want her comfortable. I wanted her in the fight.

Home is 12,000 miles away. And we have to endure tsunamis and tidal waves to make it there. Yet, we have no choice but to try to make it home.

Even if I have to swim with one arm around her and one arm paddling, I’ll get her home, somehow. It’s my job

And two days ago, we got a lifeline in the form of some hope. But that’s a story for next week. For now, we keep searching for familiar shorelines.

Her: I kept telling myself, “When Logan gets home, it’ll be ok. When Logan gets home, it’ll be ok.”
Me: Well, I’m home. We both are. And it’ll be ok.

Bounty Voyages Map

Should mention that her first doc did an amazing job getting her to where she is now. For that, I’ll always be grateful.

But now things are different. We need someone who is believes she can make it safe to familiar shores.

DONTATIONS

Location: two days ago, the hopsital again
Mood: hopeful again
Music: though the truth may vary, this ship will carry our bodies safe to shore
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My grandfather passed

Hard to describe how it feels

DSCF5492
The thing with this disease of Alison’s is that everything else is filtered through it.

My grandfather just passed. I’d like to comfort my mother and yet I don’t have time to tear away from Alison or the kid to do anything meaningful for her.

He was the last of that generation for me; I have no biological grandparents any more. Despite not seeing him in over a decade, in addition to the sadness, it’s a strange feeling of … loneliness? Not sure how to describe it.

Last saw him on my birthday, April 17th, 2005, 11 years ago, which might explain the pants in the picture below.

Had meant to see him and my grandma again but then I got robbed and had my own cancer scare so I couldn’t.

Couldn’t even go when my grandma passed because I was tied up in court and crap, piecing my life together again.

And the past seven years have been one bit of heartbreak after another. Then Nate was born. And then everything went to hell.

Life gets in the way.

He was 97 and had lived a good long life. I look at Alison and think that she’d have to live another 60 years to equal what he’s lived through. What a thing to think.

Was told that, near the end, he combed his hair. He was getting ready to see his wife again. We do so love our wives in my family.

Speaking of love, grandpa, I always loved you and grandma, even if I couldn’t head home to tell you in person.

You woulda loved to meet the kid. He’s got a grin like grandma’s. I woulda loved for you to meet the kid.

Rest in peace, and tell grandma that I miss her and our late night talks.

imgp0473

DONTATIONS

Location: home, debating whether or not to go to the hospital again
Mood: sad
Music: Monsieur, lay down your burden
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What? You too? I thought that no one but myself…

I wish it was a bus

RadicalMMA ToughMudder Team(c) 2016 Alesya Yelisow

It was 97 degrees on Saturday. Which is the same day that my cousin and about eight other people from my gym ran in the Half Mudder Long Island 2016 Tough Mudder race to raise money for Alison’s care.

It’s a motley group of people. There’s an actor, an appraiser, a chef, and…not really sure what the others do.

Not sure what they do because, in my gym, we all go there to fight. There’s a shared passion for the struggle. I’m not even sure I know everyone’s real name as most people have shorthand or nicknames. The names other call us, the occupations we have, are all left on the doorstep as we enter. All that matters is that you have the same shared passion for the struggle.

CS Lewis once famously said that, Friendship is born at the moment when one man says to another “What! You too? I thought that no one but myself….” It’s born when you meet someone else of your tribe that sees the world in the same way you see it.

It means more than you might imagine for them – or anyone, really – to see my wife and our situation and think, How can I help?

———-

Speaking of my gym and helping, another member of my gym, Christopher Vallaro, was arrested for allegedly beating up two Muslim teens on July 2nd outside a mosque. He said that the two teens were trying to grope and rape his girlfriend and he came to her aid.

He was cleared by the police for a hate crime after surrendering and telling his side of the story. I don’t know all the details, but Chris isn’t a racist.

When this all went down with my wife, my buddy Max – also from my gym – wrote me: If I could stand in the way of the things that are hurting Alison and you and your family nothing would ever touch you. I wish things worked that way.

And that is how I feel. You know the strangest thing that I think of every day?

I wish it was a bus. I wish it was bus racing towards Alison instead of cancer. So I could hurl myself into her and get her out of harm’s way.

How I wish things worked that way.

I wish it was a bus. Or two punk kids. If only…

But I digress. I believe Chris. If anyone ever tried to hurt Alison or the kid, I would find myself surrendering myself somewhere. But only after hurling myself into harms way.

Her: What about you? Are you ok today?
Me: I’m only as good as you are. If you’re ok, I’m ok.

DONTATIONS

Location: still at home, still hoping
Mood: worried
Music: It seems there’s more of us at home.
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Cash Cab-ing Half the Tough Mudder

My first post not (only) about Alison in months

Can’t say things are great where I am. But we’ve had it a lot worse the past year.

So I’ve been able to do a few things for myself, like just read again. It feels weird to have any time to myself.

Speaking of weird, randomly read this page about Reality Show Secrets and realized that the “Cash Cab secret” was my story – well, mine and my buddy, Mas.

See, he was invited to be on a show – we were told – called Show me New York.

Him: Wanna come?
Me: Sure.

The day before, someone called me and asked me about a dozen trivia questions.

Producer: What is the period of violence after the French Revolution called?
Me: The Reign of Terror? (pause) That’s a weird question for a show about the City.
Producer: (laughing) Yes, Reign of Terror. And we just want to measure intelligence. Can you meet the producers in the West Village tomorrow?
Me: What’s the address?

The next day, we met them there and they told us that the taping had been moved to 23rd and Madison and hailed us a cab. After Masa told the driver where we were heading, the driver turned to us and said, “You’re on Cash Cab!”

I immediately exclaimed, “So weird, we’re actually on our way to shoot another television show!”

To which, I’m pretty sure Masa, the host, and all the producers listening in to us collectively rolled their eyes at the same time. This was edited out.

Now, the thing is, I never published that story on the blog, only told my friends – and I’m sure Mas told his friends what and idiot I was – so I’m just curious to know who posted it.

It was almost exactly 10 years ago. At the time of the taping, was still with my ex; we broke up just a month later. Thought my life was over then.

At that moment, didn’t know Alison existed. And Nate wasn’t even a thought. Now they are my whole world.

Funny how life is, yeah?

———-

Speaking of Alison…

My Radical MMA gym buddies Liz, Josh, Donald, Henry, Hassan, Roslyn, and Sawyer, along with Henry, Alesya, and Boreth, are participating in the Half Mudder Long Island 2016 race on July 24th to raise funds for Alison – they’re actually the team that’s raised the fourth largest amount of money.

Honestly cannot say where we would be without the support of so many friends, family, and total strangers. It lets us try to be somehow normal again.

Me: Morning, sunshine! Ready for another day of PT?
Her: (yawning) No…yes?

Donate to Team Alison for the Tough Mudder!
DONTATIONS

Location: still at home, which is a good thing
Mood: conflicted
Music: just want to be, happy again
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Grab your things, I’ve come to take you home

In the hospital again…wait…

Empty Hospital Room

Doctor: I’m discharging her.
Me: Are you sure?

The past year has been a series of horrifying news with a side dish of, “if you act now, here’s some bonus horror.”

  • We go in for stomach pains, find out she has a blood clot and a secondary infection, and she stays in the hospital for 8 days.
  • We go in for a blood transfusion, find out she has pneumonia and dangerously low white blood cells, stay for 10 days. Blood issue is never resolved.
  • We go in for a scalp cut, get a medication which causes her to get a seizure a minute, and she stays in the hospital, essentially for all but five days in May.

So when our doc told us that we had to go in for a fifth surgery, it was rough. Not only would we have to deal with the effects of a fifth surgery, we were certain that there would be some additional misery that would keep us in the hospital twice the expected time.

We checked in on Monday and when they wheeled her away Tuesday morning, I dashed off to my gym for 85 minutes.

When I stepped out, realized that my ringer was off and there were eight missed calls.

They cancelled the surgery.

So on the steps of Penn Station, madly called everyone in the hospital to find out what happened. (As a side note, trying to speak to a human being in a hospital is easier said than done). The surgeon ultimately called me back.

He said that just before starting the surgery, he spoke to Alison and was pleasantly surprised at how responsive she was and how much stronger she looked. So he cancelled the surgery minutes before it was about to happen and told me to come take her home.

I’m not a superstitious man. Still, I’m reluctant to write anything too hopeful. After all, all emotional pain and joy happens in that gap between what you hope and what you actually get.

And yet, I’m slightly more hopeful now. But we can’t stop until the job is done.

Doctor: Yes, 100%. Keep doing what you’re doing and we’ll see her in a month. Take her home, Logan.
Me: I’ll be right there.

DONTATIONS

Location: not in the hospital, thankfully
Mood: hopeful again
Music: My heart going boom boom boom
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