Her: I’m tired of being sick and in pain. What’s the point? To live a few more days? Me: To stay alive for one more year.
For the past few months, Alison’s been on three treatments to fight this damn thing. Last Monday, we lost all three treatments.
One treatment is called Optune and involves an array of magnets that she wears on her head 24/7. It sounds crazy but was just approved in October 2015 to fight her type of cancer.
The second is an experimental treatment that’s not approved for her cancer but it’s similar to the treatment that President Carter used. We just started it last week because of her new growth.
The third is a highly experimental treatment that’s not approved for any cancer but passed Phase 1 and 2 clinical trials in Brazil. I managed to find a supplier to agree to get me some.
The first two we lost because our insurance changed. The third we lost because FDA rules changed.
It was a difficult Monday, to say the least. Yet, in some ways, Alison seemed relieved. She was tired. Tired of the struggle. Tired of the pain. And I couldn’t blame her.
But later on in the week, Optune told us to appeal the decision and if we did that, they would let us continue to use the device for a fraction of the $21,000 per month it costs (you read that right). So we got that back.
Then our doctor called the insurance company and asked for a waiver for the second treatment. He called us late in the week to come in for another infusion because it had been approved. I’ll update this entry this week if it happens. So that’s back too.
Finally, a young woman I had been corresponding with about the third treatment told me that her husband wasn’t doing well. So she was going to send me two months of the drug. It just arrived.
More on that in another entry as it deserves more than such a brief mention here.
So I told Alison that all I wanted was for her to make another year. Because we didn’t know what the future holds. On Monday, all seemed lost. By Friday, we were back in business.
And, like I said, Optune was just approved October 2015. Who knows what will happen October 2017? We just have to go a little farther.
Me: Remember that story I told you about the 12,000 miles? We just have to keep going until we see another island. I’m just asking you to hang on for a little while longer. Her: I’m so tired. Me: Just a little while longer. I’ll be with you the whole time.
My gym sent her those flowers above.
It was the perfect cheery thing for an otherwise un-cheery week.
Mariko and Rene Dreifuss
Rene is the owner of the gym, my dear friend, and my instructor; Mariko is his talented wife who designs all the cool images for these fundraisers. If you’re at all interested in starting something new and (very) physically and mentally challenging, consider signing up at Radical MMA and supporting these two lovely people, who spend so much time supporting Alison and me. As an added bonus, you can always watch Rene abuse me on the mats, which he does with alarming regularity.
She ran in the Tough Mudder last year with the others for Alison. I always feel bad for the guy that thinks he’ll take it easy on her because she’s a girl. Then again, it’s very entertaining.
Balaji Sudhakar Subramani
It’s a good thing he’s part of the gym, because when he and I are both there, I think that Rene is torn as to whom to abuse, which gives me a 50/50 shot at a reprieve from something called The Japanese.
He’s my other main coach in the gym and the guy in this picture. We call him “Damn Chad” because, he’s so good that, at some point rolling with him, you’ll inevitably say “Damn, Chad – what just happened?”
Donald Trainor and Drew Cotton
I put them together because they both had their own personal fundraisers for Alison, for which I am very grateful, and because my relationship with each of them is much like the video below, but with less explosives and more choking.
Liz isn’t rolling because of work, but not for lack of trying. She was the one that organized the Tough Mudder for Alison, which meant so much to us. An artist by trade – she has some work in a show this Sunday – I told her that most of my legal clients were artists; obviously, she has a lawyer for life.
Jeff is another 40-something but he’s much, much, much better than I. He was one of the first people that I spoke to about Alison. He got me in touch with a survivor of brain cancer, which was a lifeline at the time as that was some hope when we needed it the most.
A chef by trade, he also ran in the Tough Mudder for Alison and first turned me on to the wonders of turmeric. If it wasn’t for our current situation, I’m fairly certain I’d be irritating him by showing up where he works for food.
Laura N. Benítez
Laura used to work around the corner from my pad. I told her that we would grab coffee before/after class one day but then she up and moved to California for a new adventure. Ah, to be young and carefree and studying how to choke people. I’m glad she’s back if only for a bit and to roll for Alison.
He’s a fellow tech that also happens to be the gym’s unofficial dietitian. When Alison dropped to her lowest weight, he gave me some invaluable ideas to get her stable. I still consult with him now for eating tips and terrible puns.
She’s one of the people in our gym that I think might go pro one of these days. Looking forward to that and being her agent. I expect the standard 10%.
Miguel is the other 40-something in a school of 20-somethings. While he’s an actor from Spain, I believe we think the exact same thing every time we leave the mat: “Man, this is gonna hurt tomorrow.”
He was actually a student at my fencing class but, with a background in wrasslin, told him Radical might be a better fit. Years later, he’s much better than I. How I hate him.
Half-man is one of the top athletes in our gym. He’s also ridiculously tall, handsome, kind, and intelligent with a wife who’s beautiful both inside and outside. How I hate him as well.
A fellow Cornell-grad who prevents me from saying that I’m the best Cornell grad fighter there.
My cousin, whom I love and am very proud of for being the badass she is. I resent that she is younger, arguably stronger, and more attractive than me.
Is an actor and one of main training partners. I think he could be a pretty good fighter if he devoted himself to it but I won’t encourage him because his mom, an actress herself (who was in a small film back in the day) sent Alison $5,000 for the Tough Mudder and I think she’d be mad at me if I did.
We took a train together once and he stayed on well past his stop to tell me more about the woman he was dating at the time. Wasn’t too surprised when they got hitched: You wanna marry someone who forgets to get off a train because he’s telling someone else how great you are.
Is an example of a small world; he actually knew my cousin Roslyn even before he started there. I don’t see much of him but am touched he still volunteered for this.
As irritated as I am with Half-Man, it’s doubly true for Ji as he’s all those things and Chinese. Here’s him being taller and younger than me at ComicCon a few years back.
Finally a quick thanks to Henry Cho, and Jonathan Chan who can’t roll but have already agreed to sponsor others, and Philip Chen, whom I told you about previously. I just heard that Farouk Araki, whom I don’t know very well, is also rolling for Alison – and that’s why this is so cool. People helping others just because…
The kindest thing you can do for someone is to value greatly what they value greatly. I value nothing greater than Alison and the kid.
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.
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.
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.
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.
Had a rare bit of downtime and coorporating weather so I saw my friend Claire for dinner the other night and then went out with my friend Bryson to celebrate his wife’s birthday.
Don’t actually get to catch up with people in RL all that often; partly because we’re all busy and partly because FB and other social networks are kinda like “keeping up, lite.” We get the curated highlights that people want to share and, for the most part, that’s often good enough.
But it’s nice seeing people when I can. Claire is staying here in The City from California because of her fella and Bryson is, as always, the same guy I knew back in college but with two kids now.
It’s nice seeing how your friends’ stories unfold.
On a different note entirely, I’ve been trying to get more into Instagram.
My main issue with using is that I don’t generally like how pictures from phones come out. But here are the highlights of what I’ve done recently – follow me!
Spring in NYC and Bryant Park.
#Cloudy day in #NYC and autumn leaf bag bear downtown is unhappy.
Nighttime falls in the #UWS in #NYC. The #DINKYs and #YUPPIES grow restless.
It’s #spring and sunny in #NYC but still cold enough to freeze you solid.
She has an cool series about what people pack when they travel and she interviewed me back when.
Think it’s interesting because I find what I pack to be rather mundane but everyone else seems to be much more compelling – suppose that’s just how it is. Things are always more interesting on the other side.
In any case, take a look and leave a comment or two.
Right now, I’m on an email list filled with names I’ve not seen in years.
Some people are heading down to the funeral, some are sending flowers. My friends and I are sending an arrangement.
Can’t really imagine what his parents are going through. Don’t want to. When I heard he died, after the initial shock wore off, I thought of my own parents. I’d never want them to have to go through that.
What a thing to bear.
I wish I did actually give him a call. Or he gave me one. Or we did run into each other like people do here.
Life gets in the way. That is, until it gets out of the way.
What you think makes you better is not what you think
Me: My shoulder and leg are killing me today. Her: I married you the day you broke. Me: No backies.
There’s a massive “historic” snowstorm that’s supposed to hit my area today and it’s already started as I’m writing this.
I was supposed to have gone out to Long Island for a seminar but just got the cancellation notice late last night. Just as well since I dunno how I was gonna make it back in the snow, especially since my injuries aren’t healing like I wanted them to.
My buddy Bryson stopped by the other day and we grabbed a coffee around the way. We chatted about getting older, injuries, kids, mortgages and the sky blue repair company. Stuff old men talk about over coffee.
Speaking of kids, when I was a kid, I remembered a story about a greek doctor – maybe Asclepius – who cured people that had lethargy with this magic soup.
Centuries later, scientists recreated the ingredients of the soup and didn’t see anything particularly noteworthy about it.
But they then realized that he cooked the soup in an iron pot, creating an iron rich soup for people withe anemia. The cure had nothing to do with the ingredients of the soup itself, rather the vessel it was cooked in.
There’s a related story with how this one dude came up with an idea to cure Cambodians of anemia with a lucky fish made of iron cooked in soup. They wouldn’t do something as simple as put a piece of iron in their soup until it was shaped like something they recognized.
Getting back to my buddy, we talked about how most people think they have to be ready for having kids or a mortgage, but I think it’s the opposite of that: Getting kids or a mortgage makes you ready for kids or a mortgage.
Suppose that’s another post for another day.
Right now, my circumstances say I gotta run out into this snowy environment. Maybe I’ll take some pics.
Was on the edge of a cold for a few days but the body decided to just take it all the way there yesterday.
It’s probably just as well, I need to just spend a few days resting the shoulder, which is still wonky.
Unfortunately, had to wake up this morning an cancel meetings I had lined up for the rest of the week.
As a byproduct of my being 41, a number of my clients these days were originally friends of mine. This leads to some interesting conversations.
Me: Can we reschedule for next Monday, 10AM? Him: Can’t that’s prime bathroom time. Me: (laughing) I’ve never had to reschedule a meeting because of … prime bathroom time. Him: …that you know about! Me: Can I use this in my blog? Him: Sure, just don’t use my name. Me: OK, Jon (not his real name…or is it?)
The key to life, I think, is to take the comedy you come across in life and enjoy it.
Which seems harder and harder these days, seeing as there seems to be so much unspeakable evil in the world.