Nightwing

I’m determined never to be “here” again, but I’m still unsure how to do that. I doubt taking June out of the calendar is feasible and prior to cancer, it was a month I loved. So taking down June is not a solution.

But the status quo is not either.

I do not accept this.

I will not be here again. 

I have come to the conclusion that I live a “1% life.” I live in the 1% of probabilities both good and bad. My odds of being eaten by a wild bear are somehow more than yours. I somehow will defy those odds, but the opposite is also true. I will win the lottery more likely than you too. I have more tragedies than the common person, but also I’m also the luckiest too.

I’ve come to just accept this and I’ve got ample evidence to back up this claim. 1% life it is.

So my life will be a ride for sure. The first 42 have been something.

BUT BUT.

If I am going to have all these “tragedies” and FEEL all of them so deeply (empath), than it is ONLY fair that I get to FEEL the highs. The incredible moments when life just hugs you. When everything just lines up and you feel bigger than just your life. 

That is only fair. Why can I feel all of your pain but not the love recently?

So THIS can’t happen again as lately I can’t not feel the highs that my brain acknowledges exist. In June I can only feel the lows. 

Example: Benno’s birthday. Logical self- AMAZING! I mean the best. He was in his happy place and we were scouting a site for Benno’s bar-mitzvah. Here is a video of Benno, Steve, Jacob, and a friend watching planes land from a pool! How cool is that. But yet, I watched it, but couldn’t feel it. All I could feel was panic, fear, and sadness.

This is not fair. 

So this cannot happen again. 

I will spend this entire year fighting for June. I will reclaim this month as soon as I can feel it again.

Nightwing,

Today is a day to remember and each one of you should feel proud of your role. Without you, we would not be here today.

Three years ago, Steve and I were hearing our options, which were slim. We had gotten Jacob’s diagnosis only 10 days prior and we were still practicing its words. “Neuroblastoma,” “highrisk,” “chemo,” “radiation,” tumors wrapped around aortas.” 

It was a scary time, but this guy always kept it cool. Even learning how to pronounce neuroblastoma before his mama could. 

Here is a picture exactly three years ago today.

And if someone that day told me that three years to this very day, I would be taking this picture, I would have never believed you.

Jacob is on this bus, going to sleepaway camp. All his own idea. Big brother has no interest, none of his friends are going. This is all him.  While I almost vomited out of nerves for him, he just boarded that bus with a stride of confidence. He knows not a sole there. Nor has an older brother to learn from, he just walks right in. 

We continue to be in awe of this boy. And I know that this miracle today of Jacob being with us and even going to sleepaway camp is a WE thing. 

We did this. 

Without your prayers, your support, and love, none of us including Jacob, would be where we are today. 

​​ ​​

I’ve gained 10 pounds. I weighed myself. Something I never do, but when you attempt to put on pants for the first time in weeks and none of them fit, you probably have a problem. So I went to verify it. 

It really should not be a surprise to anyone, especially this one. I could have calculated the weight gain myself, no scale required just a calculator. I believe I’ve consumed an extra 2,500 calories of cookies a day, right before bed. 

Eating until I feel sick is a new comfort. It makes the pain shift. Instead of feeling anxious and sad, I get a terrible stomach ache. And I just keep eating through it. The pain welcomed, and the vehicle to the pain?  Comforting. 

I’ve been here before. Never gaining this much! This is a new record. And I don’t recall this being a huge part of the first two cycles. I’ve never seen a number like this before on the scale, but when you are on round three, you just give in. You feel so hopeless. That even though it’s “over” it’s never “over.” That you are trapped not by cancer, which you thought was the true villain, but by your own body. You feel like you never walked out of the hospital at all.  That you have been running in place for the past 3 years. Running and going nowhere. That you are back to square zero. 

Now I know in my head I’m not living this nightmare anymore, but can someone tell my body that?

So I went for a walk and I’m going to quit the cookies…or at least try.

LOG:

• Morning missies are constant. It gets better during the evening. 

• Taking some days between treatments to see if the spacing effect matters as I’m not responding as one would have hoped. 

• Today is Benno’s 11th birthday. Special day planned that I hope I can enjoy

“Clean slate.”

“Let’s start afresh.”

Just like the word “again,” this is the stupidest concept I’ve ever heard. Cognitively speaking there is no such thing as a clean slate. Nope. That is not how the brain works. Unlike a whiteboard, you can’t just wipe it clean. It has memories, while they may be faulty, they exist to help you.

We use the past to inform our future. It is an evolutionary advantage that has a lot to do with our species surviving for so long. Some say even more powerful of an adaption than that opposable thumb. Being able to remember the past allows us to make informed choices about the future.  Not going to eat those berries again! I remember being really sick last time.

For most of my life, I’ve had people close to me asking for a “clean slate.” Or not asking at all, just pretending that none of it happened. Just pretending that the last 4 days of screaming and crying didn’t happen and never speak about it again. As a child, I welcomed this clean slate. A clean slate sounded wonderful. Anything to make the present stop and the adults around me promised each time it would be truly clean. But it never was, because a clean slate is not real. 

A clean slate does not exist. 

A clean slate is Santa Claus.

I wish I could say for those believers that this concept serves them. That they get presents from Santa even. That the clean slate allows bliss. An ignorant bliss. But I have enough evidence to say that is anything but the case. Instead it’s just the same movie over and over. The same misery over and over. The same “surprises.” The same berries that made them sick. 

Just noting here to remember. When someone asks for a “clean slate” know that is the biggest bunch of bullshit ever. 

I found a unicorn. A giver of light. Thank you tiktok algorithm. 

I found an empath sister, Elyse Meyers.

Dear Elyse,

I have such respect for you. I am new to this anxiety disorder world. I did not grow up anxious. If anything the opposite. The first one to jump. The first one to travel the world without an itinerary. The first one to say “yes.” So this feeling is very new. 

I recognize that you have grown up like this. I really can’t imagine, but the fact that you have used your stories to help others laugh and know they aren’t alone, I thank you. And now that I’ve watched basically every video you have ever made, I am in such of awe of you.

You make me laugh. You are an amazing comedian.

You make me feel not alone. You are a natural storyteller.

Just like I try to do on this blog, but you are so much braver. I hide behind paper, you let the world see your face. 

Just sharing your name for my followers who may be looking for more people like this who share their stories to understand their own. 

Follow her on TikTok (if you aren’t already) . Trust me on this one.

@elysemeyers

 I mean who wrote this (New Knowns)? 

You do have to give it to her, she has a perspective. I mean this one is my favorite. 

What a hopeful optimism and a zoomed-out perspective on life. She sees beauty. She sees some sort of meaning in the chaos. I marvel at her. Truly. I get why you are friends with me. However, I also can read these and feel so sad for her. I vacillate between envy and embarrassment for her. 

Envious of her bravery and positivity. The writing isn’t terrible either. I don’t think I’ve ever considered myself a poet and don’t recall ever writing a poem since the 6th-grade poetry unit so thats cool. 

But then within seconds, I’m so embarrassed and sad for her. 

I mean does she work for hallmark?  Talk about cognitive reframing.* I mean she can really make lemonade, no lemons for that gal and feels hard to live up to. 

Question: Was that first blog annoying when you read it? I have personally been offended by it. I offended myself. I bet I offended some of you. A perfectly good response to “New Knowns” could be: I get it I don’t have a child with cancer, but Covid fucking blows. No, I’m not re-imagining the future, I’m just trying to survive the present. Fair reaction. 

My reaction is more… get your head out of your ass, hey Ms. Optimism, here are some of the New Knowns for ya. You were right there will be new knowns!

• Roe Vs. Wade is going to be overturned
• Ukraine was invaded (yes…that just happened. No I did not expect that. It was not “to be expected”) 
• You will have these crippling depression cycles and the strongest theory going is they are caused by the month of “June.” I mean…that is the stupidest thing I’ve ever heard, but yet every year here you are. 
• You have a cookie addiction, like legit.
• Homelessness in NYC quadropoled over night. 
• School shootings only continue, no longer a “rare moment in time,” but rather a “known”

New knowns. There you go. 

*Cognitive reframing: Reading a lot about that. The Dali Lama is quite a remarkable example of this. I enjoyed the documentary on Joy from Desmond Tutu and the Dali Lama. I have had the honor of meeting Desmond Tutu. May he rest in peace. He is a real hero of mine. 

Woke up feeling okay.

Now normally I would never write this down. This took courage. I am so scared that I’m going to jinx it!

Today I did NOT wake up with the morning missies. My legs worked like normal too. I rolled out of bed and stood up without the chronic stiffness/ pain.  I haven’t cried today or been reduced to a defeat-like sadness. 

This is welcomed, but not expected news. I feel hopeful, but yet don’t want to get my hopes to get too high. 

LOG:

Monday, June 20th- woke up feeling better.

Empath. 

This word intrigues me. 

I’ve now read several definitions of the word “empath” that I would rate from semi-scientific to spiritual acid.  Due to the vast variety of opinions on this word, I cannot use it without some formal declaration of its meaning.  In the absence of any accepted reputable source and its relative “youth” in the world having only entered our vernacular in 1960’s, I feel best to give it my own definition.

Empath.

(n). A person who feels everything.

Use in a sentence: As an empath, I care deeply about everything. I feel for others and never want to hurt. 

Epitimology: It’s first official ues of the word (although its history dates much earlier to the Greeks) was by a Scottish author in 1956 in the book “The Empath.” The story was about paranormal empathetic beings, called empaths. Sadly they were used by the government to exploit workers in the end, maybe that is the future for these people… But in general the term was used to describe a person that had emotional telephay. 

However, this science fiction version of empath is not what I speak of. My definition, does not have people communicating with their minds. They can’t tell that person to turn left without speaking, no I don’t believe that is what defines an empath. It is rather the feeling of other’s emotions rather they like it or not.

Feeling like if it was happening to them. 

This can be a real gift. Empaths get to feel all the emotions in a room. At a celebration, wow, you feel all the love. However, like with everything it is a double edged sword. When an empath witnesses horror, they feel all the pain. They usually are creators from equations to art. 

And for a while in human history, being an empath was a real evolutionary advantage. As many of our greatest thinkers are empaths. Empaths are natural observers giving them the ability to invest, see patterns, etc. Empaths were the fittest, they were useful, successful, and popular. I use fittest in the evolutionary biology and psychology sense of the word. People are drawn to empaths, making them find a mate easier, therefore more likely to pass along their genes to others.

An empath has a natural curiosity, and therefore, usually good learners (unless they have a learning disorder, which is also common in empaths).They like to please as they very much feel your emotions and don’t want to harm them and want to feel the praise back as they can feel that too. Since they feel so deeply, they love even harder. They want to feel that love and work hard to get it.

However, empaths are being challenged in the modern age. With the acceleration of technology allowing empaths to feel and see so much more at a more rapid rate, they are in an emotional turmoil. I would go so far to declare that being an empath is no longer an advantage nor are they fittest in this mordern word. It will be interesting to see if empaths become less over the next hundred years. If this type of human goes extinct as the modern world.

I believe I’m an empath. I also know Im not alone. I’ve met those that follow after me, empath children. I’m an aunt to more than one. 

And I don’t wish this path on them. It can feel isolating feeling so much that others don’t.

Maybe we need an empath support group. 

The “morning missies” 

Definition: 

Morning missies: (n) a description of an ailment in the body that does not develop, but one wakes up with. Symptoms include feelings of dread, tightness in the legs and chest, and sadness, such sadness.

Etymology: Modern English, entered the vernacular in June 2021.

Use in a sentence: Abby has the morning missies.

Log: The first day of Morning Missies, June 19th. 

Morning Missies were present in both other cycles, but only was given an official name in cycle two. I have no recollection as to when they started last cycles as I didn’t write about it. I also have zero trust in my memory about it.

Up until now, I’ve been sad in the morning. But the sadness started lighter, and if anything it only got worse over the day. However, they are back, but if I remember these burn off slowly, only getting better at night. So maybe a good sign. 

Note: Don’t try to calculate average duration ( average time length of a cycle) as each cycle “starts” at a way different part of the cycle. Meaning, it takes a bit before I knew what was happening/ and accurately document it. The first time I had no fucking clue what was happening. Jacob was out of living in the hospital, it was June 2020. I mean there was June 9th, and we were navigating a world with Covid and a child just in remission, BUT I was not living in the hospital nor having to deal with hammers falling from the sky. Nope. Not dealing with any of that. 

Things were good. Steve and I felt like this was going to be our summer. We had arrived, a year late, but we were there, Montauk and we had plans to sail. Nantucket of course was on the list! Steve was just in heaven. Here we all are living at sea with the best sunset views in the world. Look what we did. We are all living together on the boat in Montauk masks and all.

But I remember looking at Montauk and how beautiful it is and being so sad, and that was so strange. I was surrounded by everyone I loved and I was sad. Something like this had never happened prior to that day. Being sad for no reason and in physical pain. 

However, this time, cycle 3, I was freaking on it. Proactive. I knew exactly the feeling and jumped into action. I knew what it was. I Could name it. Had that going for me. 

Summary: Hate the morning missies. But maybe good? Maybe I’m near the end?

If I ever become a comedian I have my opening liner.

How do you know if you’re clinically depressed? You cry through your ketamine treatment. (Cue drums and laugh soundtrack)

Yes. I cried through the whole thing. How is that even possible?!

I mean dude, that is depressing.  Even a pain reliever pumping through your veins can’t make you less sad. 

But wait: I am not calling it yet. It is not harmful. By means no means is it making me sadder. So not ready to call this treatment. There is about a 70% chance considering my profile (age, etc) and symptoms that this will work for me. Those are the best odds I’ve ever been given. Jacob nor Steve had those odds. I’ll take it. 

I just assumed, which I don’t think is a crazy assumption, that for at least the 90 min infusion I would not feel the pain. But nope. I sit there looking at the peach walls. Thinking sad thoughts and crying. 

And for the record!!! I am trying so hard. I really want to feel better AND I’m a damn good student. I like to learn. I will do exactly as you say nurses. I will be your best patient, which I’ve been informed I am. 

The nurses are quite amazed by my willingness to not only give my arm and not move an inch while they put needles into it, but also let them prick me 4x to find a vein, each time really having to dig in there. If anything I apologize. I warn them in advance. This is not a nurse thing this is a me thing. I have the smallest veins in human history. Any time I’ve tried to give blood, or had to give blood, its been an issue.

The up side? Junkie does not seem to ever be in my future. 

The nurses told me to listen to happy music. I listened to happy music, but it made me sad. 

And then I looked at myself in the clinic and said, “what the fuck has happened to me? Look at me? How can I allow this to happen? This is not okay. This is not cool. This is where someone draws the line. I’m literally in a clinic getting drugs pumped into my body. Where did life turn south for me? How can I make sure I’m never here again?”

That made me really sad.

So I pressed the button. Yes, you get a button. 

It was the first time I’ve used it. 

And I know when I’m low because you know exactly what I did next? 

I apologized to those nurses.

I apologized that I’m not doing it right. 

That ketamine doesn’t work for me or that they should know it will take a fucking horse tranquilizer clearly to help me and I’m sorry for that. I’m sorry that I am fucking this up too.

I make it clear to them that I will do whatever it is to feel better.

And I am really trying. I told them that I took off this week. I mean not really, but lots of meetings were canceled and it was light week for me. I rambled all of this to the nurse who was so kind.

She told me there is no way to do it wrong and that I am doing everything right. That you can’t fail at this. I listened as the tears ran down my face as there are no words that can make me feel not like a failure. I failed Callie. I failed my children. Look at me…badges laying in a hospital bed. I’ve failed myself. If this isn’t failure, what is?

LOG RECORD:

1. Yes you can cry during ketamine treatment, which would logically seem impossible, but depression is depression
2. Inflammation is terrible, sinuses are affected this round
3. Four infusions and not feeling better
4. Binge eating (thats new)