And up until five months ago, my favorite time of day was 10PM, when I went to bed and chatted with my favorite girl about our respective days.
But for the past five months, my favorite time of day has been 7:30 at night.
Because that’s when I would take a shower in my blue bathroom. And with the running water and an exhaust fan that sounds like a wind turbine, I could lean against the shower wall and weep without my wife or little boy knowing.
For the first two months, it was every night I wasn’t in the hospital. Every goddamn night.
As the weeks wore on, it wasn’t every night, but it was still probably most nights.
But as of last week, my favorite time of day is the morning, when I take Alison out to the living room and she sees the baby and smiles.
And he smiles back at her and laughs. My two favorite people in the world.
For just a moment, I think that everything may be ok.
Whenever I’m gone from this blog for a while these days, you can assume it’s because something crazy is happening and I’m too busy to update. This past week was no exception.
We had to go to the hospital on Sunday – which happened to be my birthday – yet again, for both an MRI as well as a new issue that cropped up. After a good deal of negotiations back-and-forth, I managed to avoid our being admitted to the ER for a sixth time. We ended up making it home at 8PM that night.
But then we had some good(ish) news. Her MRI reading came back late – really late – the following day. No new growth. So, while that’s not the outstanding news of shrinkage, it’s far, far better than growth. And what’s more, this is no growth while she’s essentially not had any treatment since January 25th.
Perhaps the best thing is that the old Alison has been making more and more appearances at home. She smiles at the baby and at us, watches TV from time-to-time, and engages us in normal conversation.
Her: (looking at baby) There’s my sweet boy. Me: He’s getting big – he wears 6-9 month old outfits at 5 months. All he wants to do is eat. Her: (laughing) Well, he is your son.
It’s the most hopeful we’ve been in a while.
Because of all the turmoil, I’ve not been to the gym but I still regularly speak to my coach there. He was one of the first people I mentioned this to because of all the fundraising he and the gym has done. And because he’s a source of great comfort for me.
Me: Finally, some good news. It’s not great news but it’s definitely not bad/horrific news. We were certain that, after three months of her being in and out of the hospital, it would be bad. Even her doc prepped us for that. Him: I’m so happy for you. Still in the game with a fighting chance. That’s all you need.
She’s still in the game. We’re still in the fight.
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.
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.
Had a conversation with three friends over the week. Told one of them that I didn’t want any visitors in the hospital but I suppose some friends never listen.
Him: I’m outside, just meet up with me. There’s a bar around the corner. Me: OK.
For the sake of clarity and brevity, I’m going to combine these three conversations into one.
Him: How’re you two holding up? Me: Same. Terribly. They’re cutting her open again right now. (breaking down) She’s fighting for her life and all I can do is watch. Him: That’s your job. Your job is watch over her. Me: My job is take care of her, and I’m just doing a craptastic one. Him: (scoffing) You think most guys’d do what you do? Me: Maybe. But I’m also wallowing in self-pity. (pause) I’m never gonna get over this, no matter how it goes. I’ll never be normal again. My boy’ll never be normal. It’s so damn selfish, I know, but that’s what I think. Him: I’d think that too. Look, I don’t know what would happen if my wife got sick – and I never wanna think about that – but I’d like to think I’d do exactly what you did. Me: What if I cursed her? (pause) I wonder if I shoulda let her go the day she collapsed. Saved her from all this. Him: If you did that, you and I would be in another bar with you wondering, “Should I have tried to save her?” Look, when my mom passed, I kept wondering if there was more I could have done to save her. Even now, think about that weekly. Here, at least, you know you’ve done everything. Me: What if it’s not enough? Him: You’ll never know unless you do it. (motioning to the bartender) Another drink? Me: (shaking head) Gotta get back. I can’t even self-medicate. Him: (laughing) You will at some point. I’ll help. That you never need to worry about.
We left the hospital last week. She had pneumonia, a blood clot in her leg, and an unknown blood issue that they couldn’t resolve. Since they couldn’t treat the last one, I just asked them to release us.
It’s par for course for this damn disease. Everything is an unknown in an unknown. It’s just hell.
Sorry again for the radio silence. We’re back in the hospital. We can’t seem to catch a break.
We went to the hospital for something relatively routine but the next thing you know, we’re in the ER for the fifth time in as many months. 13 hours of tests later they say that they have to hold her overnight.
Then overnight turns into five days. And counting.
There’s something wrong with her – above and beyond what they already know is wrong with her. What’s scary is that they don’t know what’s wrong.
Don’t really have the right words to try and express how I feel. Somehow she keeps pushing forward; I don’t know how she does it. In many ways, I feel as if I’m following her lead.
Think that even the hospital feels some pity for us. The last time we were here, we were in a cramped shared room. This time, she got a private corner suite overlooking the same river. No rhyme or reason.
We’re certainly not complaining about the nice treatment, but we’re not really able to enjoy it in any meaningful way.
What we really want is answers and clarity. The two things we can’t seem to actually get.
And so we sit here in a sun-drenched corner room in the east side of town, yet completely in the dark.
Doctor: I’m sorry. We’re still trying to understand this. Me: You’re no closer? Doctor: (shakes head)
Me: Can you do one more set of exercises? Her: I’m so tired.
Cooper Union is a private science and art focused college here in the City that’s miraculously granted each admitted student a full-tuition scholarship since it was founded in 1859. That’s changed slightly in the past few years but it’s still impressive.
The fact is that donations have kept the school afloat for all this time and enabled it to not just provide amazing things to its students, but the world as well – they have Nobel Prize winners, Fulbright Scholars, and countless other notable alumni who benefited from this generosity.
And generosity seems to be everywhere around us, particularly this past weekend, when Alison’s relatives got together along with her high school friends and had a fundraiser for Alison, which raised far more money than we imagined.
Because of Alison’s trip to the emergency room last week, we weren’t able to go but watching it unfold on Facebook was another humbling and moving thing for us.
The fact is that people donate to places and things like Cooper Union because they think that their money will help, not just the place being donated to, but others as well.
Alison spent almost her entire career working to help others in the world of non-profit. I feel that part of the reason we’ve had good luck with fund-raising is because she’s positively touched so many people. It’s part of why I love her so. I want her back in the world, helping it along.
As for me, I don’t know if I contribute much beyond random musings and trivia. For example, the thing that I always found most interesting about Cooper Union is that the building was built 1853 and it was built with elevator shafts.
But safety elevators weren’t invented until 1857. The reason that Cooper Union built elevator shafts four years before they were invented was because the builders were confident that someone would eventually figure out how to build a safety elevator. They planned today for their tomorrow.
Every day, I push Alison to try to get stronger. She’s weak from the pregnancy, three brain surgeries, three emergency room visits, infections, radiation, and chemo. I should really leave her alone.
But I can’t. I won’t.
Because, like those elevator shafts, I feel that we’ll figure this out eventually and she’ll need to be strong for the struggle ahead. We need to prepare for tomorrow because I hope that tomorrow comes.
With so many people helping us, I think we can get to eventually, eventually. We owe it to everyone to keep struggling.
Me: Just one more set? Her: OK.
I wanted to take a moment to thank Marybeth W. Madlinger, Meghan McCarthy, and Heather Nerwinski for all their help with the fundraiser this past weekend.
Below are local vendors that donated time, goods, and services to the event so if you’re at all interested in any of them, please click below for more information.
Thanks again to everyone to went and have continued to support us since this whole hell started.
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.
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.
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.
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.
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.