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.
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.
There’s more, but you get the point: By any metric, this was a craptastic holiday.
Having said that, the truth is that it was still better – considerably – than Christmas last year.
Last year, she was in the hospital and we didn’t know if she’d make it a week. She also didn’t remember much. I had to tell her that she had cancer, over and over again. It was a fresh new hell each time.
This year, she was with me, her family, and the baby. And at night, she felt better enough to hang out with all of us for a few hours.
This blogger wrote an interesting fact about giant squid, which are monsters that average about 42 feet in length. Their biggest enemy is the sperm whale, another monster that averages 52 feet in length.
Giant squid are considered commonplace in the oceans yet if you go to wikipedia, there’re almost no pictures. Because none have ever been caught alive. They’ve almost never been seen, even though they’re, evidently, all over the place.
There are 360,000 sperm whales.
Assume one eats one giant squid a month, that’s 360,000 giant squid eaten each month.
That’s 12,000 eaten each day. (360,000/30=12,000)
That’s 500 each hour. (12,000/24=500)
That’s 8.3 eaten each minute. (500/60=8.3)
That’s about one every 7 seconds.
One a month is a really conservative figure: if it’s one per week, that number jumps to one squid being eaten every 1.7 seconds. But scientists, examining the bellies of caught sperm whales, think even that is too low.
They think that they’re eating between 3-8 per day. If that’s the case, as the blogger noted, that means that there are over 3 million – over 3.6 million, really – of these life-and-death battles between these two giant monsters happening every day.
Hold that thought.
You know, years ago when I worked in China, I remember telling this young executive that I needed to call my parents to give them my opinion on a second family car to replace my mom’s old one.
Him: (rolling eyes) You’re telling me that your family has two cars? Each of your parents have a car? Me: (puzzled) Yeah, it’s pretty common. Most families have two cars. I have a car too. Him: (scoffing) You have THREE cars?! That’s impossible. (sarcastically) Everyone in America must be a millionaire then.
Speaking of China, when my sister was there teaching English, she said that some parents wanted their kids pulled from class because they didn’t want their kids learning English from a Chinese person.
Her: (confused) But I grew up in America. It’s my first language. Them: (ignoring her) No, I want my children learning from an American. Her: But I’m an American!
Not to pick on just China, just recently, I told a relative that I didn’t eat for three months as a teenager and lost about 60 pounds. She too scoffed that it was impossible.
Was thinking about alla these stories the other day as Alison strapped a five-pound weight onto her weak leg and managed to lift it ten times, which is something that, if you knew what she has been through, is as impossible to me as those stories above were to those people.
There are people are fighting these impossible and monstrous battles every day; while it’s commonplace to them, it’s alien to us. Alison struggles to stand, to eat, to have any semblance of a normal life.
It’s something that one can’t fully comprehend unless one has experienced it.
And good god, I hope you never do. I hope you never battle monsters and I hope you never experience the hell that is a stage four cancer. I hope you never experience all-too-possible impossible horror.
That’s my Christmas wish to you: May you never see monsters.
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.
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.
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.
Commissioner Gordon: What is it? Batman: Danger, Commissioner. Danger. (leaps)
Commissioner: Did you just fall down? Batman: ….No
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:
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.