Month: May 2016

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personal

60 Minutes Killing Cancer Polio vaccine isn’t an option

Going for the superlative

Spain cookie
TL;DR

Dr. Friedman: The polio vaccine isn’t an option for Alison. Not now. Not in the future.
Me: Thank you, doctor. We’ll continue doing what we’re doing then. I’ll save her, somehow.

———-
Years ago, when Alison and I just started dating:

Me: (struggling with the tip on a check) I’m a clear exception to the stereotype that all Asians are good at math.
Her: (laughing and taking the check) I actually won the Unified Math competition in my school as a kid.
Me: You beat out the Chinese? I don’t believe it.
Her: It’s true.

One of the things I love about Alison is that she never settled for second best. If she did something, she went full bore.

She didn’t just work in a non-profit, she actually flew out to Africa and Asia on the reg to help out.

She didn’t just study Spanish, she got a certificate in fluency and lived in Spain for while.

I could go on.

Unfortunately, this is also true of her cancer. She not only has what is considered the worst type of cancer – a brain cancer – she has a glioblastoma, the deadliest form of brain cancer.

And she not only has a GBM, she has the rarest type, one that passes the corpus collsum. And she not only has the rarest type of the deadliest type, she has the most difficult one to cure, the butterfly glioma.

It’s the one time I wish she didn’t go for the superlative.

When this all first happened, pulled out every favor ever owed to me that had any chance of helping us.

To this end, someone got me in touch with Dr. Henry Friedman, the doctor on the 60 Minutes show Killing Cancer and I spoke to him about potentially getting her the vaccine.

He told me then – and we spoke again two days ago – that because Alison has a butterfly glioma, she would never be able to participate in the vaccine now, or in the foreseeable future.

Obviously, this isn’t what I wanted to hear. But I accept the world as it is, not as I hope it be. But it doesn’t mean I’ll stop looking for a cure.

I just want all of you (very kind and well-meaning) readers to know that it’s not an option and will never be.

Our search continues.

\’

Location: home today, dunno for how long
Mood: scared
Music: I don’t mind. Without you it’s a waste of time

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You’re the hubs

One bite at a time

bed
There’s an old joke that goes:

Q: How do you eat an elephant?
A: One bite at a time.

Think that if I went back in time and saw all that she would have to go through, I woulda crumbled on the spot.

And yet, the dull drip of constant crises in our lives is almost routine now.

Last week was her first Mother’s Day and as well as her birthday.

She spent her birthday by her lonesome getting cut open yet again as we went to the emergency room for the sixth time.

That issue she had in April roared back in a spectacular way – blame myself for trying to keep her from staying yet another spell in the hospital. Perhaps if we just did it then, we wouldn’t be here now.

Wonder if I’m making any good/rational decisions at all. Constantly second guessing myself. There are moments where I wonder if I’ll make it with my sanity – or her’s – intact.

Me: Do you know who I am? Do you know where we are?
Her: (shakes head)

But what else is there to do but go on? And she does, somehow. A bite at a time.

Like I said, there are moments when I cannot believe we will do anything but crash.

But even in those darkest moments, when I sit by her bed and think all hope’s lost, she still manages to pick me up and make me think that we can get in front of this thing somehow. That we’ll make it.

Me: Do you know who I am? Do you know where we are?
Her: Yeah, you’re the hubs. (looking around) I can’t believe we’re here again.

\’

Location: the hospital, yet again. No river to be seen.
Mood: crushed
Music: I think I’m ruined. Didn’t anybody, didn’t anybody tell you?

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My favorite things

May be ok

The kid

For those long time readers of my blog, you know my favorite drink at home is aged rum – on the rocks with a slice of orange, to be specific.

And when I’m out and about, find it hard to resist a daiquiri or an old fashioned with rye.

My favorite foods are chili, gyros, and dumplings. In no particular order.

My favorite place in the world is the pier at Riverside Park. My favorite thing to wear is my yellow leather jacket. My favorite things to do are wrassling, fencing, and cooking. In no particular order.

And up until five months ago, my favorite time of day was 10PM, when I went to bed and chatted with my favorite girl about our respective days.

But for the past five months, my favorite time of day has been 7:30 at night.

Because that’s when I would take a shower in my blue bathroom. And with the running water coming out of the best shower head and an exhaust fan that sounds like a wind turbine, I could lean against the shower wall and weep without my wife or little boy knowing.

For the first two months, it was every night I wasn’t in the hospital. Every goddamn night.

As the weeks wore on, it wasn’t every night, but it was still probably most nights.

But as of last week, my favorite time of day is the morning, when I take Alison out to the living room and she sees the baby wearing her pregnancy necklace and smiles.

And he smiles back at her and laughs. My two favorite people in the world.

For just a moment, I think that everything may be ok.

I wish and wish and wish…

\’

Location: ever at home
Mood: hopeful
Location: 20:00 yest, leaving office hating life
Mood: indescribable
Music: On silver stars I wish and wish and wish (Spotify)

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