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.
In a fit of irritation, I wrote on social media a few months back that if people really cared about Alison, they would make sure Trump didn’t get into office.
Relatives that supported Trump irritated me the most so I had to block several of them just so any future family gatherings wouldn’t be ridic awkward.
I was pretty shocked at some of the vitriol I received from this. For example, this lawyer I’ve never met in my life named Jason Zhou called me “disgusting” for discussing Alison’s sickness and politics.
Human decency aside, I’m surprised at how little people seem to understand just how government works.
People have been asking me how our New Year’s Eve went. Everyone was in bed by 9PM. Me? I welcomed in the new year reading about how Republicans were planning to try to gut Obamacare within the first few months of office.
My gym is having yet another fundraiser for Alison – I think this might count as the sixth or seventh (more on that this week).
My coach asked me how much I would need for basic living and all the treatments I am hoping for. That’s a difficult question to answer. If our insurance stays in place, perhaps as little as $60,000 a year, “little” being a relative term. If it doesn’t, even without any new surgeries, we’re looking at well over half-a-million dollars.
The truth is, if we lost Obamacare, I’d simply have to return to work. The main issues are two-fold:
We’d have to hire a caretaker for Alison until she gets stronger, and
She’s still unable to walk and use her left arm – so we’d also have to hire a PT coach.
I have the option to go back to work if I have to, millions don’t.
Several articles came out recently where people that voted for Trump didn’t take him seriously when he said he’d repeal Obamacare. My first question is: Why would they take that risk?
In any case, we start 2017 slightly better than we started 2016, but with new worries. And we’ve had enough worries for a lifetime.
Her: I wish I could go back to work. Me: Someday you will. Her: What if we lose our insurance? Me: I’ll think of something. I’m always thinking of stuff.
As a break from my usual tales of woe, lemme tell you some stories.
In sixth grade, the girl I had a crush on wore a shirt that said GO GO. Had no idea what it was about but, of course, I had to find out. No internet meant asking the popular kids, who just rolled their eyes because I never heard about WHAM!
Got my hands on a tape of them and I thought that they were ok. They were no Beatles but not altogether terrible.
And here’s why it matters to me that he just died: It was honestly, the first time I really thought that the trajectory of my life might be different than it was. That even though I was a fat and lonely son of immigrants that wore glasses and couldn’t get a girl to talk to me, that it didn’t always have to be that way.
So I kept listening to him, impressed that he wrote and produced almost all of what he sang.
That girl that I had a crush on and I grew up together so that, when Faith came out, we were pretty good friends. By then, I’d decided that George was the coolest guy in the world. I bought shiny aviator glasses like he wore in the video. Because that’s what kids do.
The crush girl told me I looked like a bug. Told her that if it was good enough for George, it was good enough for me. He was old news, she said – but not to me.
Listened to I Knew You Were Waiting by George Michael and Aretha Franklin as I wrote my college essay. It was one of the few songs he didn’t write but that didn’t matter that much to me.
Discussing music, my first freshman writing teacher said George wasn’t that great. He was no Beatle and, to her, somewhat terrible. I said she should give it a chance. She gave me a B+ instead.
It was always Waiting for that Day from that’s meant the most to me. Don’t think he ever even released a video for it but there’s a part that goes:
I just sit here on this mountain thinking to myself You’re a fool boy Why don’t you go down Find somebody Find somebody else My memory serves me far too well
It dovetails nicely with a Chinese story I told you once about a man who sat on a mountain waiting sixty years for a flower to bloom as penance for betraying the woman he loved.
Suppose we’re all waiting for someone and someday. I heard that the man George loved the most in his life died just six months after he met him, which I always thought was terribly sad. His mom passed from cancer when he was just 34.
That’s the thing with tragedy, it gives you depth, but at such a price.
Maybe that’s why the songs I loved from him the most were about waiting and longing, two things I knew well growing up and, unfortunately, even now.
As it turns out, the person that I was waiting for in my mountain of brick and mortar was Alison. I wait for her still.
But I digress. Rumor has it that he died overweight and alone. That really bothers me. Perhaps it’s because that’s how I imagined I’d be now when I was a kid.
I could go on for a while. Just lemme say: George, you were the soundtrack to my childhood and you gave me hope that my life might be different for the better. And it was. In some ways, it still is, and others, far worse than I could have imagined.
Thanks for the hope, man. As for me, I hope you find the love the next life that eluded you in this one.
Me: I think my very favorite song from him is I Knew You Were Waiting for Me. Her: I don’t like that song. Me: How are we married?!
Crap, Debbie Reynolds died also. It’s like all the little bits of my childhood are determined to go before the year’s out.
This song sums up my thoughts as to her:
Here’s to 2017; let’s hope its better for everyone.
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.