My So-Called Thermonuclear Life

The other destructive elements of my life

World War II bomber in NYC
When the first atomic bomb was dropped on Hiroshima and Nagasaki, over 129,000 people were killed in moments.

I’ve met lots of people throughout the years that think that the technology of mass destruction stopped in 1945; that when we talk of nuclear weapons, we’re talking about the types of weapons that we used in World War II – 70 years ago. Unfortunately, that’s so terrifyingly far from the truth that it’s laughable. The bombs that killed those 129,000 people are now just tiny cogs in current thermonuclear weapons.

In fact, current thermonuclear bombs use the atomic bomb technology as just a trigger. See that image there where it says “fission bomb?” That’s an atomic bomb within a thermonuclear bomb.

Thermonuclear bomb

Think of a flintlock pistol; the atomic bomb would be equal to that tiny spark that the flint makes versus the bullet.

The situation with Alison is a thermonuclear bomb in my life. Yet I have two other things that are happening in my life that, individually, would be atomic bombs.

Each one of these three things has changed the course of my life forever. Each of these things would take up the entirety of this blog if not for Alison’s situation.

The thing is, this blog has always been my story. Always tried to respect the wishes of people that didn’t want to be part of it. So I can’t tell you the other two stories that take up the other 2/3s of my time, energy, and emotion.

You probably wouldn’t believe me if I told you anyway. Because I’m not sure I believe it.

And I just received some soul-destroying atomic news about one of the other stories this week.

Me: Did it…did it go well?
Her: (long pause) No. The doctor said there was nothing he could do.
Me: So what now?
Her: We wait. (sighing) And hope.
Me: That’s all I do these days.
Her: Don’t break. Your son needs you.
Me: He’s the only reason I don’t break.

Boom.

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Location: a very dark place
Mood: destroyed
Music: life is hard. It’s misery from the start. It’s dull and slow and painful.
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Stay, Gold

Stay Gold

Gold Statue
My dad told me a story once of a man who had a block of gold. He buried it in his yard and would dig it up periodically to admire it before burying it again.

One day, someone stole it and the man was inconsolable. But his friends told him to paint a rock gold and look at that. Because he didn’t use the gold, there really wasn’t a difference between a piece of gold and rock painted gold.

The moral of the story was that money has value only when it’s used properly. But I always thought it a weird story – the man knew what was real gold and what was paint.

Ended up bringing my wife to the emergency room again this past week. Was hoping to avoid it but we didn’t have a choice.

I’ll simply say that this time, I didn’t collapse to my knees but it was still pretty horrible. Waiting to find out more information and the waiting is excruciating.

I’m a lawyer, amongst other things. Not a doctor nor a nurse. I’m not qualified to do much of what I’m actively doing now. But I’m also an auto-didactic.

And the thing I need to figure out is how to save my family. Amazingly, Alison is not the only person in my life with a life-threatening aggressive cancer. In fact, there are three people I love in my life with life-threatening illnesses.

All of which seem to be reaching their nadir at once.

I think I’m of above-average intelligence. Figure most people think the same about themselves.

Yet, what’s the point of all the intelligence in the world if I cannot use to save my family? It’s like that guy with the piece of gold – all my intelligence is useless if I can’t use for the only thing that I care about in this rotten world.

Ever read The Outsiders? There was a kid there named Ponyboy that read a poem called Nothing Gold Can Stay.

So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

His friend Johnny implored him to “stay gold” in a world that’ll hollow out anything of value in you.

In my tin life, my family is only thing of any real value and they are all suffering. The only thing I want is for them to somehow stay.

I have to figure out a way to make that happen.

 

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Location: heading to the east side
Mood: weak
Music: I want it real. Run away with me now
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1,000 times an hour

Promises made, promises broken

Watercolor view of the UES, NY,

Nurse: Do you have her password?

Without getting too deep into it, the past week has been the most difficult week at home since November. And we’ve had some awful weeks in the past three months.

My insomnia makes this surreal experience all the more surreal. What little is in color is watercolored and runs together before fading to grey again.

The doc wants us to bring her back to the hospital but she was so distraught and confused the last two times that I feel it’ll only be worse a third time.

Ultimately, I have to make that decision and it is to keep her at home, however difficult that is.

Marriage is such an odd thing. You meet a stranger one night and, a little while later, you become family. To the point where I make decisions for her instead of her own parents, who have been totally supportive of all the choices I’ve made.

I have tremendous respect for them. Her mom is about the nicest person I know and her father – a war hero – is someone I would like to call a friend regardless of the reason why.

We got married five years ago this month. I told them I would always keep her safe.

I’m failing that promise right now. Keep thinking there must be something else I can do.

But there isn’t. There’s only the waiting.

The last time we were in the hospital, the nurse wanted to make sure I was family so she asked for the password I gave them when I admitted her.

It’s the same three words I’ve been saying 1,000 times an hour, every waking hour, since the beginning of November.

Me: Yes. It’s: “Please be ok.”

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Location: hell
Mood: struggling
Music: Skies turn to the usual grey
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Heavier than when I left

My thoughts are never far

Subway Station at Bowling Green NYC

Me: I’m off to the gym.
Her: (nods)

Wish I could give you good news about Alison and the rest of us but I can’t. New and unexpected miniature disasters visit us regularly, each one with it’s own particular set of grief and crazy.

It’s exhausting.

Haven’t been able to go fence, even though it’s around the corner, cause classes are only at night.

Did manage to get to my other gym this week, after not going for over a month.

While it’s not around the corner, it’s also not that far from me. Grab my gym bag, which never has much in it – mouthguard, clean clothes, water, and maybe my keys – and 18 minutes or so and I’m there.

It’s strange being back there. The older guys know better than to ask how I’m doing but newer people want to know details of my horror story, which I understand from a morbid curiosity point of view, but I go to forget my problems, not relate them.

Still, I try to focus on being there but it’s hard. My thoughts are never far from her. 90 minutes later, I’m done and start heading back home.

Even though the distance is the same, and my bag should be lighter since I drank the water and am wearing the clothes, instead home seems forever away.

And I struggle with a bag that seems even heavier than when I left.

Me: (cheerily) Hey beautiful, I’m back.
Her: (nods)

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Location: snowy NYC
Mood: struggling
Music: minor catastrophes bring me to my knees
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My job is to kill things that need to be killed

Giving us time

Redeemer Church in the Upper West Side
Years ago…

Her: Logan!
Me: (running over) What?!
Her: Spider. Kill it!
Me: Wait, what? Why?
Her: Your job here is to kill things.
Me: …that need to be killed. Spiders are our friends. (turning to spider) Arentcha, little guy?

Friends keep asking if they can stop by and take me out for a spot of rum or maybe bring me out to eat. They feel I need a break. Probably do.

The thing with me is that I have an addictive personality. It’s related to my insomnia, as I can’t turn off my mind.

Now, I feel that every moment of my time has to be spent finding a way of killing this monster that’s entered our lives.

I don’t go to the gym. Don’t cook. Don’t even have time to work.

Instead, I spend my time researching ways people somehow beat this cancer. The largest percentage of my time is wading through pages of medical jargon and separating the crackpot solutions from the things that actually have some science behind it.

All the while, hoping to find something that might lead us home. To our old mundane lives, with our old mundane problems.

Her: Kill it, Logan!
Me: Nope. I’m gonna name him, Hubert.

A Day For Alison

Regarding cooking, I rarely cook these days because my church has been sending us a jaw-dropping amount of ketogenic food – we’re on a ketogenic diet partly because of a well-researched podcast a female gym buddy sent me.

And the food has been organized by an amazing woman I met for the first time at my buddy Bobby’s memorial. She checks in on us regularly, as do many members of my church.

There’s even a fundraiser happening at the end of this month in New Jersey.

Information, donations, and time. These are the most valuable things to us right now, with time being the most valuable.

We just need more time.

 

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Location: home, of course
Mood: reasearch-y
Music: One minute I held the key, next the walls were closed on me
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Felicitous

All emotional pain and joy is the same

Snow covered bicycle in NYC

For everyone that shared my letter to Vice President Joe Biden, thank you. I’m hoping that it will find its way to him somehow. And if you’ve not shared it, please consider doing so?

Alison finished her radiation and chemotherapy this week. The standard route is six weeks but ours was only three because the surgeon took out so much of the tumor.

Doctor: In some ways, her collapsing was felicitous. Because the surgeon did a beautiful job cleaning up the tumor. And we can also reduce the number of treatments.

I agree. If nothing else, not sure Alison would have been able to finish a full six weeks of chemo and radiation. The toll of just three weeks – both mentally and physically – is shocking. The last day of radiation and chemo was…difficult. And now, we wait.

Waiting is always its own special hell. Because we form expectations of what might happen: too high an expectation and you’re dashed when reality falls short; too low, and you spend more time in anxiety and distress than necessary.

My whole life, I’ve always wondered the meaning of Hope being the last thing to escape Pandora’s Box.

Was Hope last out of the box because it’s the one bulwark against all of the evil of the world? Or was Hope last because is it the worst of the worst?

Because all emotional pain and joy happens in that gap between what you hope and what you actually get.

  • If you expect to make $20,000 a year and you make $100,000, that $80,000 gap is joy.
  • If you expect to make $100,000 a year and you make $20,000, that $80,000 gap is pain.

For us, we remain hopeful. And we wait to find out what is felicitous and what is not.

Her: (waking) What do we have to do today?
Me: Rest.

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Location: with our son
Mood: hoping
Music: Hold on, I feel like you could shine
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A letter to Joe Biden

Two questions for the Vice-President

Alison McCarthy

A boy walks across the beach, throwing starfish back into the sea.

Old man: What are you doing?
Boy: (flings a starfish into the sea) Saving starfish from drying up on the beach.
Old man: (laughing) What’s the point? There are millions of starfish dying on beaches. Throwing one back won’t matter.
Boy: (picks up another starfish)

————-

Dear Mr. Vice President;

My wife and I were deeply touched and saddened when we heard of your son’s passing, because we often remarked how unfair your life had already been. How you’ve managed your grief so well, I cannot fathom.

I write to ask that you help spare my family the grief and anguish that your family had to bear both those times.

My wife, Alison, and I have struggled for years to have a family. We suffered several losses in the past few years. That alone would be enough to break someone but my wife persevered. You would like her because, like you, she does not quit.

We were finally blessed with our son Nathan on November 3rd, 2015. But on November 8th, just five days later, she had a seizure and was rushed to the hospital. After a biopsy, we found out she had an incurable, aggressive brain cancer. I believe it was the same brain cancer that took Beau from you: A glioblastoma (GBM).

Since that day, I’ve done nothing but research the disease and help my wife. And in that time, in less than a month and a half, she’s had a total of three brain surgeries.

As you know, glioblastoma has an almost 100% death rate with a near 100% recurrence rate. Yet after over 50 years of research, little has changed: median survival is only an abysmal 14.6 months – in the past 15 years, there’s been almost no progress in survival rate.

Brain tumors are the leading cause of cancer-related deaths in children under 14, and the second leading cause of cancer-related deaths in children under 20.

14,000 Americans are stricken with it each year, each with names and families. Names like Brittany Maynard, Lauren Hill, Theodore Kennedy, Beau Biden, and Alison McCarthy. Families like yours and mine.

We learned we had this insidious disease the same month you attended the GBM AGILE Reception. There, Dr. Anna Barker said the problem is clear – outdated FDA rules that were never meant to deal with aggressive terminal illnesses:

“Randomized clinical trials [the current standard clinical trials] are 70 years old…what other technology doesn’t change in 70 years? … Meanwhile, cancer biology is moving at light speed and potential treatments have to wait in the queue.”1

Thousands are dying each year while these outdated rules stand in the way of potentially life-saving research and everyone knows it, because we treat brain cancer like an infectious disease. We think that there should be one cure (eg, penicillin) for one disease (eg, strep throat).

But GBM is not strep throat. It is closest to AIDS, when it first arrived, in that it is terminal and terminal very quickly. And time is a luxury GBM patients do not have.

Here’s what an FDA trial requires, of which every step is an excruciating hurdle for a GBM patient:

Phase 1 – Examines the safety of a product in a very small group of healthy volunteers or patients to determine appropriate dose ranges. (20-80 patients)

But: A patient with a GBM is, by definition, not healthy. My wife is not eligible for any clinical trial right now because she is not healthy enough for one.

Phase 2 – Evaluates the safety and efficacy of the product at a pre-determined dose in comparison to the standard care treatment (100-300 patients)

But: This means half the patients don’t have access to a drug that might help them and, for someone with a one-year life span, if that dose is wrong, there is no second chance to get it right – because that’s not the purpose of a clinical trials.

Phase 3 – Tests the product in double-blind comparison to the standard care treatment with a large and diverse population to determine efficacy and usage guidelines (1000-3000 patients)

But: Because GBM is rare, these patients are not to be found. Moreover, double-blind means that half the patients, again, are on placebos.

This is why in the past 15 years, there have only been four advancements in GBM therapy: Optune (2015), Avastin (2009), Temodar (2005), and Gliadel wafers (2002).

The outcome is so consistently dire, we cannot afford to deal with each treatment option via FDA rules, which have a real-world cost of over 2.5 billion US dollars per trial.

The cost, coupled with the requirements, make it easy to see why only four advancements happened in the past 14 years.

People think – in fact our doctor thinks – that the Hippocratic Oath says, “First do no harm.” This is false.

In fact, the Hippocratic Oath does not say that. It does, however, say “I will apply, for the benefit of the sick, all measures which are required.”

Similarly, researchers are held the standard of the Declaration of Helsinki which expressly states that “concern for the interests of the subject must always prevail over the interests of science and society.”

Here is my first question: Can we honestly say that the FDA regulations in place now for GBM aren’t in violation of those oaths?

The rules are not there to save patients, but to aid science. A laudable goal, but one directly in conflict to these sworn oaths.

This is precisely why Larry Kramer wrote in the NY Times about AIDS decades ago, stating that “Double-blind (placebo) studies were not designed for terminal illnesses in mind. … It’s genocide by neglect.

My second question is equally simple: If there is credible evidence that a treatment may improve both progression free survival and/or overall survival, and GBM has an almost 100% death rate with a near 100% recurrence rate, why would we not afford a patient every bit of chance possible?

For example, Valcyte is a medication for HIV use but has been shown to have some effect on GBM. However, “it is not standard practice to prescribe medications that have not been vetted through appropriately designed phase II trials.” This, despite the fact that the drug is well-tolerated and has minimal risk.2

Similar to HIV treatment, gonorrhea, combination therapies are the only hope for a cancer as deadly and insidious as glioblastomas.

Yet FDA rules are designed for monotherapies – again, treating this terminal illness like a mere infectious disease.

Dr. Emil Freireich, one of the three doctors that promulgated combination therapy to cure leukemia, is on record saying, “Would the things we did in 1960 be possible today? The answer is unequivocally capital N, capital O, no. … Reforming regulation is the most important thing we can do.”

– https://vimeo.com/119006145 at 1:04:13

ACT-UP transformed AIDS from a death sentence to a chronic condition through by-passing the FDA and creating a drug cocktail, a combination therapy of current drugs to deal with a terminal disease.

To this date, there has never been an FDA randomized Phase 3 trial for the AIDS cocktail. This is totally due to political will.

“If AIDS patients demanded direct access to drugs and treatments, should cancer patients with terminal illnesses not also make similar demands?”

The Emperor of All Maladies: A Biography of Cancer, pg 310

Everything we knew and read of Beau Biden confirms your statement that he was the finest man you have ever known.

My wife has been heartbroken, not because she has to go through this, but because my son and I have to go through it. For this and countless other reasons, she’s the finest human being I have ever known.

Your grandchildren deserved every chance – however minute – to grow old with their father, to remain on top of the mountain. My son is only some 70 days old as of this writing. He deserves to know his mother, just like every child deserves to know his or her parent.

We must hold doctors and clinicians to their oaths and put patients first, not science and rules. Instead of these onerous rules, doctors and their patients should, together, be allowed to simply weigh the benefits against the risks.

I ask for GBM patients what the AIDS activists demanded for their loved ones, when faced with a terminal illness, as delineated more thoroughly here:

  1. Shorten the drug approval process.
  2. Eliminate double-blind placebo trials – this is the height of cruelty.
  3. Include people from all affected populations at all stages of GBM in clinical trials – currently there is a clear distinction between “new” and “recurrent” patients.
    • Why on earth is that? Beau and Alison should have had access to everything the moment they found out they had a GBM.
  4. Medicaid and private health insurance must be made to pay for experimental therapies. This is critical with the passage of the ACA.
  5. Doctors must inform patients of any and all clinical trials that a patient may be eligible for.
    • Currently, patients must learn that clinical trials even exist on their own. Then they must research to see if they are eligible for them, also independently.
  6. The FDA must support a goal of keeping patients – that is keeping people – alive, rather than furthering science.

Curing cancer – especially this cancer – is not a moonshot because we’re lacking the knowledge, sir, it’s a moonshot because we’re lacking the political will to change regulation.

Please help me save my wife, Mr. Vice-President, and all those waiting for a cure for this horrible cancer. We don’t have much time.

Please #SaveAlison.

Logan Lo

 

————-

Boy: (shrugging and flinging the starfish into the sea) It matters to this one.

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Location: home with my family
Mood: determined
Music: Together we could break this trap
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You fight for that 1%

I don’t accept it

Logan and Alison in Bermuda

Her: (crying)
Me: (awaking anxiously) Are you alright?
Her: I thought I died.

The night terrors have slowed down but haven’t stopped. But for better or worse they’re happening at home because Alison came home this week.

She’d been in the hospital for over a month. When she went in, the kid was just over 32 days old. He’s now more than twice that age and over twice as big.

When she first got home, she couldn’t look at him. Not long, anyway. She’d start to cry. Because he reminds her of what she’s missed out on. What she’s lost.

In some ways, that perfectly encapsulates what’s happened in the last two months.

The women that gave birth to him is not the woman here now. The woman that gave birth to him was a normal weight, with long blond hair, and an easy laugh. She was doing pregnancy work-out videos in the weeks leading to delivery.

Now, she’s only 100 pounds. Bald. With a foot-long scar encircling her head and another six-inch scar going from the top of her head to the base of her neck. She rarely smiles, let alone laughs.

And she sits in a wheelchair. She has little use of her left side. She’s a shadow of the person she was.

But I hope. I hope there’s some way she can be that person again. I believe she can be that person again.

In my gym, we get yelled at a lot. It’s not a place for the soft.

And we each get yelled at for specific things. For example, I get yelled at for accepting what’s called a “pass.”

Coach: Don’t accept it, don’t accept that pass!
Me: He was 99% passed!
Coach: (angrily) That means 1% not passed! 99 is not 100! You fight for that 1%. You don’t give up until it’s done. You’re not done at 99%! (kicks me)

And so it is here.

I don’t accept it: The prognosis. The statistics. This life. I refuse to accept any of it. Not for her, not for me.

Whatever the percentage we have, I refuse to accept it. We’ll fight until it’s done, whenever that may come.

Me: You didn’t. You’re still here. And you’re gonna be keep being here as long as you keep fighting, ok?
Her: OK.
Me: Go back to sleep. I’ll be here the whole time.

12510411_10153743014581877_1751352215977495639_n
My gym is holding a fundraiser for Alison – this is the fourth or fifth one.

I’m so grateful that I have them supporting us. I’d have gone full raving without them.

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Location: Home. There’s no place like it.
Mood: f__ this thing
Music: But I have the skill, yeah I have the will
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I’m all by myself

Four words and 50 stories

Weill Cornell Christmas Lobby 2015

There’s little sadder than being the only person in a hospital on Christmas.

———-

Me: (picking up phone, anxious) Alison?
Her: (panicked) Where are you!? Where am I!?

Of all the Adam Sandler/Drew Barrymore films, the one I’ve enjoyed most is 50 First Dates.

In it, Barrymore’s character can’t retain recent memories and only remembers things in her distant past, and Sandler’s character has to repeatedly “meet” her again and again. In the end, he records a video – on VHS cassette no less – to remind her of everything the two of them had gone through together.

So let me tell you about our first Christmas as a family…

I woke up and made a cuppa joe before I was going to make my way to the hospital. But then my phone rings and I look down to see it’s Alison. It’s the first time she’s called me in months since this happened so I anxiously answered.

She didn’t remember anything happened and was terrified. Minutes later, I’m in a taxi, rushing across town. She calls again.

Her: (scared) Where are you?
Me: I’m in a car, I’ll be there in 10 minutes.
Her: Hurry. Please. (pause, quieter) I’m all by myself.

In life, there are words that chill you to your core. “Your wife has cancer” were four such words. “I’m all by myself” were four others.

So I said to her what I’ve always thought are the four sweetest words in the English language: I’m on my way.

The cab stopped at a red before the hospital, so I flew out the door and ran up the stairs to her room, still on the phone.

Me: (panting) I’m on the second floor, I’ll be right there…

When I arrived, she turned to me with the same panicked look in her eyes that she had a month ago, when I told her the four words the doctor said to me. Telling her then was one of the hardest things I’ve ever had to do.

Then I realized I had to do it all over again.

So I steadied myself, gulped down some air, and sat down next to her bed.

Me: Honey…

And I saw the look again. Could go a lifetime, never see that look again, and it’d still be too soon.

Dunno how doctors regularly give bad news. Where do they find the strength to tell someone that that their lives are in grave jeopardy on the regular? Do they drink every night at their desk?

Me: …he said you might not wake up. But you did. Then he said you might be permanently damaged…
Her: (horrified)
Me: …but you’re not. And then another doctor said he had to open you again and said you might not come back, but you did. This cancer has been wanting to kill you but you just won’t let it.

Somewhere along the line, the alarms that were going off because of her rapid heartbeat, stopped ringing. And she started breathing normally again. Her voice became stronger.

Her: I can’t believe this is my life.
Me: (sighing) This woman once said, You don’t have a right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding. It’s a ___ hand, but you’ve been playing the hell out of them. We’re all so proud of you.

Then I took her phone and explained everything a third time – this time via a recording on her phone. And I titled it: WATCH ME!

Told her that if she woke up again and didn’t know where she was, she could watch that and wait for me. Because I would always be on my way.

Her: (quietly) I want to get going and beat this.
Me: That’s my girl. (nodding) That’s my tough girl…

Screen Shot 2015-12-25

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Location: A different room in the same hospital, looking at the same river
Mood: humbled
Music: Don’t stop, no, I’ll never give up
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