That she loves me as deeply as she does is worth more than anything you might imagine. And I love her so. I would do anything to take this from her.
I would do anything.
For those of you that have read me for years, you know I struggle with depression and dark thoughts. I struggle now.
The people in my life know that too. So I called my mom last night.
Her: …and you? Will you be ok? Me: No. But I’m not going to hurt myself if that’s what you’re asking. Her: I am. Me: I have to raise our son. I won’t let him grow up alone. Her: Promise me. Me: Mom, I already promised her.
Still waiting on news with Alison so I thought I’d write yet another political post, which I have rarely done in the past but these are different times.
All this talk about a wall reminds me of something I told you years ago that I’ll retell now.
For thousands of years, China was invaded by the north by:
The Xiongnu (aka Attila the Hun) between 133 BC to 89 AD.
The Jurchen between 960–1279AD, and they won (!) ruling China for over a century.
The Manchus, who invaded from the north and controlled China for over three centuries, 1644 to 1912.
It goes on.
In any case, some bright-eyed fella hit on the idea to build a wall. And for the next 1,800 years, they did just that at the cost of $13 billion to $65 billion. Finishing it at 13,170 miles, which is over five times the distance from NYC to LA.
When it was done, they kept an eye on that wall.
Then in 1839, the Opium Wars started – in the south – by a buncha white dudes. It never entered China’s imagination that (a) white dudes from (b) the south might try to invade. Cause it never happened before.
And guess what, they had no significant army, no significant navy, and no firepower of any consequence for the task to come. Because when you spend all your scratch on something to fix yesterday’s problem, when tomorrow’s problem comes, you’re in a lotta trouble.
The builders of the wall never had the imagination to think they could be invaded from anywhere but the north, and the arrogance to think that if they couldn’t imagine it, no one else could.
China paid for their myopia: Once the new invaders came, they sliced the country up into a buncha little colonies that only started to be sorted out a hundred years – and millions of dead Chinese – later, with WWII, the Korean War, the Vietnam war, and whatever this insanity is with North Korea.
When I was a kid in the 80s, they brought back The Twilight Zone.
One of the stories, called Button, Button, taught me a valuable lesson about empathy; so much so that it stayed with me for some 30 years.
It was about a couple that was given a box by a stranger. On the box was a button. If they pressed the button, they’d get $200,000 but someone – whom they didn’t know – would die.
After a lotta struggle, the wife ultimately pushes the button. The next day, the stranger returns, gives them $200,000 and takes the box back.
When they ask what happens next, the stranger says that he’ll give the box, and the same offer, to someone else – someone that they don’t know.
No one’s asked me but I’m sure people are wondering: “What are you doing with all the money you’ve raised?” It’s only fair I answer it.
Originally, we weren’t sure how much our original insurance was going to pay towards Alison’s treatment. Her cancer was on the aggressive side of aggressive. The only “lucky” thing about our situation was that we were already on the platinum level of Obamacare, which essentially meant that we pay 10% and insurance pays 90%.
It has been a godsend to us. At last count, Alison’s 2016 cost of care was around $2.8 million dollars. Without the Affordable Care Act, Nathan and I would be bankrupt and Alison would be dead. It’s that simple.
But we’re not and she’s not, thanks to the ACA and everyone’s generosity.
With what’s left of our money, we’re paying for normal expenses – mortgage, food, bills – some experimental drugs, physical and occupational therapy, and exploring future options, like a potential cancer vaccine in Germany.
Mainly, though, we’re saving up to see what happens with the ACA. So we’re watching the news daily to see what unfolds.
Lately, I’ve been reading a lot about #Trump Regrets and how so many people are regretting voting for Trump because they realize that things like their meals and lives are jeopardy.
Yet, it’s hard for me to feel very sorry for them.
It’s like the box. They knew someone would suffer. That someone – like Alison – might die. And they were ok with that, until they realized that the person that would die might be them.
Her: What will they do if they lose their insurance? Me: They’ll die the same way they lived: Never knowing that when you save someone else, you save yourself. It’s a shame for a million reasons.
Going back to my maritime analogy, when the nights were cloudy and sailors didn’t have stars to figure out where they were going, they used deductive reasoning to essentially say:
If I know I was there on Tuesday traveling X knots per hour, and today is Wednesday, then I must be here.
They didn’t call this deductive reasoning, though, they called it deductive reckoning, which was shortened to ded reckoning, which morphed into dead reckoning.
And it’s apt cause the problem with dead reckoning is accumulating error: If I’m wrong about any assumption, that error is magnified the further you travel in time and space. You think you’re heading to safe shores and instead you’re adrift, thousands of miles off course.
We got good news last Monday that was taken away from us on Friday – the doc missed something. Our good news never ends up being good for very long.
So we’re back to trying to figure out what to do next.
Which means that I stay up at night, thinking of all our possible pasts, trying to determine the cascading consequences of my actions. Or inaction.
This fella named Bertrand Russell said that, “The whole problem with the world is that fools and fanatics are always so certain of themselves, and wiser people so full of doubts.”
Not that I’m so wise, but it’s come to this, where I’m envious of fools and their ability to sleep. But that’s for me to deal with.
Her: Are you ok? Me: Of course. You’re home. The kid is walking. And I had a gyro for lunch. What else could a fella want? Her: (teasing) Me to be cancer free? Me: Well, there is that.
Many thanks again to my friends Ricky and Kathy, who – with their friends and mine – managed to raise $12,000 for Alison with their dinner fundraiser.
In it, several scientists found a simple 15-minute test given to 3-5 year olds that later turned out to be the single biggest determinant of a child’s success in the world – more than IQ, education, wealth, or anything else.
The test went like this:
A child was led into a room, empty of everything but their favorite food, like a marshmallow, on a table.
The child was told that he or she could have the marshmallow now OR
Wait 15 minutes and they could have two of them.
The children were tracked for several years and the researchers found that those that waited that extra 15 minutes did better at pretty much everything, versus the ones that would simply eat the marshmallow as soon as the researchers left.
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.
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.
This has been possibly the worst week we’ve had in a while. Which says a lot.
A routine visit to the doctor indicated new growth. So what was supposed to be a quick 30-minute checkup, turned into a five-hour ordeal of needles – it’s always a f___ing boatload of needles – fluids, and drugs.
What’s even crazier is that Alison kept apologizing to me.
She’s so sorry that we had to go through this. So sorry that everything was taking so much time. So sorry that there was so much fear and uncertainty in our lives.
Wanted to give her a hug but couldn’t because there were too many damn wires and tubes everywhere.
So, to comfort her, I waited until we were alone to give her a hug and then tell her the purest true thing I could.
Me: Please stop apologizing. Her: I just feel so bad. Me: Don’t. Everyone wants their life to mean something. To have some greater purpose. I want you to know that helping you in whatever way I can is the most noble and good thing I’ve ever done in my otherwise meaningless life. I’ve never done anything remotely as important and meaningful as this. It is my most prideful thing. If the high point of my life is that I’ve taken good care of you and the kid, I’d consider my life a complete success. For that, I am deeply, deeply grateful. I love you and the boy more than a fat kid loves cake. Stop apologizing. Thank you for giving me my most prideful thing. Her: (nodding) Thank you too.
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.