The foundation

The cracks were always there, but some didn’t even know they existed. As why would one look down when walking? What is there to see there? The views are forward or upwards towards the sky. Spending time looking at the ground doesn’t seem a worthy pursuit and could be quite dangerous.

Heads up! Not down.

As you may see things you don’t want to see or worse you may learn that the foundation is breaking, a very inconvenient truth.

How do you fix the foundation with a house already standing upon it?

However, COVID made every person do just that. When all of our sudden our world looked like a snow globe, of chaos swirling, we all looked to steady ourselves. We fell to all fours just to make sure the ground was still there. But when we all looked down, some sighed with relief while others gasped in horror as they fell.

There was nothing there to break their fall.

Inequity in this country is not new, but just became more fatal as some of us found no foundation to fall onto while others had fields.

Inequity is the hallmark of the COVID experience. The haves and have nots. 

It is time to look down. It is time to fix the foundation. 

Last day of immunotherapy

Today was Jacob’s last infusion of immunotherapy. The last day of writhing  pain. The last day of fevers of 105 and late night hospital visits. The last. 

 I am smiling ear to ear through this mask. I honestly never thought this day would come. It always felt so out of reach. Chemo, surgery, more chemo, then immunotherapy. The clock was set for a year, we went over that, but here we are.

Here we are. 

Here we are. 

What’s next? 


November Rain

This post was inspired by someone asking me if I felt safe living in NYC as we are here this week. I actually feel VERY safe in NYC. Everyone here takes safety seriously. Masks are everywhere and New York is strong.

But, no I don’t want to live in the city next year. Not because of the virus.

I’m not returning because of the high chance of rain.


The forecast looks stormy. It is a slow brew maybe not worth our attention as it seems so far away in this new “now,” but I’m calling it, November rain.

You can already see the drops forming. 

You can hear it even in the air. You can hear the thunder. Just listen. You won’t see the lightning behind it until November, but this will be a storm that will hit the entire nation. All 50 states will see rain. The streets will flood. Flood with people that is.  A nation will take to the streets.

Still dealing with a health pandemic, we will become even more unstable as as the lightning being thrown down is coming right from the top.

No, not the sky.

That light comes from the Oval Office.

Trump is already setting the stage to discredit an election that has not even happened. He sees the economy. He sees his approval rating on the virus. He understands the polls, and he has made it clear that he is going no where.

Already being bold enough to say something that no other democtratic candidate in our country has ever said.

Mr. Trump will you accept election results? “We shall see.”

We shall see?! 

Shivers, because we have enough information to “see” and the forecast is calling for rain. The droplets have already started falling. Us city folk blindly turn an eye thinking that it must be from the air conditioning units above our heads as we can’t imagine that we could feel a storm months away, but no the storm has started. It is here now.

We even got hit by hail yesterday. Trump said we should delay the election. Again manipulating facts to suit his agenda. While everything is “great” and “schools can safely reopen” he is now shouting danger when it comes to the election. All of a sudden the president is worried about our safety.

And the attack on mail in ballots, which the data shows is not real, is ramping up.

Lightening bolts are there, they just haven’t reached the ground…yet.

 “It will be a great embarrassment to the USA. Delay the Election until people can properly, securely and safely vote???” Trump tweeted. “Mail-In Ballots will lead to MASSIVE electoral fraud and a RIGGED 2020 Election.” 

So we are in for November rain.

Instead of a country built on democratic principles we will fall even farther in not just the world’s image but our own.  And people from both sides will take to the streets. This time Trump’s base will begin to riot as they have a narrative of being cheated. Sides colliding in the streets. BOOM. BANG. THUNDER.

I fear the November rain.

PTSD therapy

New therapy to combat PTSD that is helping me, this one I invented by accident. 

But warning cancer moms and dads and any trauma survivor, this is not doctor approved.

New therapy: Helping others with your exact trauma.

Oddly, talking to recently diagnosed parents going through diagnosis (which is the worst part) is helping me walk through my own. Today I spoke to two recently diagnosed parents. I spoke to one as his child received his round of induction chemo. I saw him say “I don’t feel good” as he moaned next to his bucket. That pink bucket that I have littered to this day around my house as this is the “party” bag of a hospital stay. Vomit buckets are free of charge.   And I listened to the parents’ concern about not eating and saw the fear in their eyes as they watched their child grow sicker right in front of them.

Honestly this may be the most sadistic therapy, because in those moments I had to relive and recount Jacob’s cancer story to help inform the parents.

However, I had to speak about the trauma with hope, positivity and love. I spoke about our family’s trauma with a positive perspective due to audience. This process forced me to look at my own memories with the knowledge of the today. It forced me to re- categorize those moments of complete fear about tomorrow with knowledge of many tomorrows that followed.

And it allowed me to be useful. It allowed the trauma to not be in vain. That it can be used to do good. That the knowledge I gained through my research and experience, can help others who walk a few steps behind.

So I can’t fully endorse this treatment like drugs and EMDR as it is a bit of a sadistic mind fuck as you watch a child and parent go through trauma, it is a bit traumatic (not going to lie). But it’s oddly helping. 

A riddle, can you solve it?


I am an influencer of people’s futures

I am thought of as a knowledge giver, but think of myself as a knowledge facilitator

I love what I do

I never have the same day twice , ever

I am a mover, it is rare to see me sitting

I am in charge of a multitude of individually unique objects that are most prized possessions, some even call them  “priceless”

I am a ethics and moral commissioner that holds court several times a day to rule on disputes

I am a disciplinarian

I am a planner, it is essential to my success and more importantly the people I care for

I am an entertainer whose skill is judged by the amount of eyes on me at one time

I am compensated monetarily to the equivalent of an executive assistant, construction worker, and correctional officer

I am a diligent paper worker and it has become more and more prevalent to my success

I am a master of standards that I did not help write

I am resourceful, I find ways to squeeze every penny, and even my own to be able to do my job

I am famous for my patience

I’m a multitasker, even though my field does not believe that multitasking is a real thing 

I am most likely in debt to student loans

I am a master digestor that can eat in 10 minutes while standing everyday

I’m a bladder controller. I pee at times that fit into my blocked schedule

And more recently…

I’m a defensive warrior. Some of us have even been trained to shoot guns and some legislators want us all to know how to shoot guns. 

And now I’m a participant of a live experiment that puts my health and others at potential risk.


Answer: teacher.

I’m sorry if this post pisses people off. I’m sorry if this is not a convenient truth, but listening to the ignorance of friends of mine who go on and on how kids don’t get sick and there is zero excuse to not open schools, is ignorant.

Maybe you need to be a principal of a school to understand that your responsibility is not just to the kids, but also, the teachers in your care. Or maybe you need to have two family members almost die to value life. 

But please just recognize the adults in the building too. That’s all I ask. Just think about if you would do their job right now. Some schools are able to open. Each school is unique in its student body, location (some can hold classes outside), etc and that there is no one size fits all. But to get angry at the teachers that are holding up the process is unfair. And to not think of them is selfish.

And while I’m on this rant…When governors say stupid things like “if we can open Walmart, we can open schools” my blood boils. Unlike Walmart, we have 100x the density and not the billions of capital to draw on to meet safety standards. We also can’t kick out our “customers” for not socially distancing or pulling down a mask. This is not a fair analogy and belittles the complexity of the schools.

Recently I’ve been zooming in/reading transcripts of public school meetings/ union meetings where teachers are sharing concerns. Each concern is so unique. Every time I hear something I never thought of.  One young teacher spoke so eloquently about her concern of hurting her students. She rents an apartment with several young adults and she can’t control where they go and what they do. Is she putting her students and families at risk? She can’t guarantee that she won’t get infected and spread to her students and ultimately their families. Last year she had a child in remission from cancer. She is now on anxiety medications to deal with her anxiety about the fall. Wow! That is an issue I never thought of! We keep talking about the older teachers health concerns, but the younger teachers also have unique fears/ issues.

And a school employs 100’s of these people. 100’s of different narratives. And already a job of sacrifice that is exhausting and hard, we add lab rat.

And people point to the data, you know I like data. We can study Israel. We can study Korea.  We can study Denmark. We can study countries that have successfully opened schools, but none of them had the infection rates that the US has. None of them opened without a national plan. And if the baseball league is struggling with what I thought was a well thought out plan with adults, who in theory, can live by the rules imposed for their safety, how can we confidently say opening schools are safe? 

We can’t.

And there is data on the other side to make us worry. The NYTimes reported over 6,000 cases linked to college campuses, the few that were operating, over the pandemic. Schools have the potential to be super spreaders. Children may not get sick, but the adults at home and the adults who sacrifice everyday for their learning are.

Let’s support our teachers. Not see them as the enemy.

Go teacher unions GO!

Jacob’s blog, year 2100

What if Jacob had a blog? Would the below be a post 100 years from now?

Not a sci fi fan, but oddly this is what poured out of me today.


I first experienced the world poisoning me at 5 years old. At the age of five, I was diagnosed with a rare pediatric cancer, which I had no genetic markers for. Instead the world around me produced a tumor with tentacles that wrapped around major arteries in my body, the ones that sustain life. So my first brush with the world and its environment threatening my species was at five, but I didn’t understand it until I was closer to seven.

Like many of you I was a young child during the pandemic of 2020. Where mankind as a whole got a taste of the story that only fossils can tell. It was not until 2020 that I understood that the world with simple pleasures like playgrounds and ipads could also be life threatening. Both threatening in different ways.

But it wasn’t until I was much older that I learned that the world was just ticking as usual, continuing its evolutionary march of change. 

The march of progress.

The march of evolution.

The exact rally cry of humans. Onwards! Progress! Innovate! Build! But they didn’t understand that the world does not revolve around them. They would have to revolve around the world.

The time of reckoning of the human species came as oddly a surprise. Even with the knowledge of so many species before them with museums dedicated to their fossils. One would think they saw this coming especially since we knew that we had brought extinction to species ourselves. That simple things like cutting down trees can bring down an entire animal that existed prior to our time.

Humans, however, believed they were immune. They forgot that they too need air, water, and are surrounded by microbes that can invade the body. They thought they were bigger than the world. 

They had some good reason to believe this. The human species has been remarkable. I’m proud to be one of them. Skyscrapers 100’s of stories high, self driving cars, labs full of miracles in bottles. They had a good track record too of fixing the “unfixable.” Polio, measles, etc.  But it was that exact narrative that blinded them. Hubris was not lacking. They felt invincible.

And when the numbers did not appease the narrative of their success which often meant bigger, faster, brighter, richer, they were ignored or suppressed. There were indicators everywhere. Like pediatric cancer soaring and the climate boiling, but we kept moving, shouting the exact words that ironically the earth had for us, PROGRESS! Onwards!

Evolution never stops.

It was only my generation that had 20/20. We saw the blip. We saw the pattern.

But unlike others species, we didn’t take extinction lightly and continued to fight. We had the ability to learn and that is what we did, we adopted. We mutated. We mutated with our inventions. We became one with them.

I remember my first mutation. A Mask. Just a simple cloth allowed our species to survive for a bit. It wasn’t a big deal to me. It was the adults and young adults who had issues. It was them that couldn’t adapt, but us kids did fine. The mutations that followed happened quickly. By 15 I had a special suit to help with the smog so I could leave the pod houses safely. Humans had finally learned that the air was causing cancer. By 20 I had a device that swept the wifi away from my brain as I worked. 

And now at 102, I continue to adapt. I continue to live, just now in a new body. I love my new body. See below. That’s my consciousness in there. Still Jacob, just new digs. Look at my moves!

I sometimes feel sad for my parents. I miss them. They were of the “last generation” as they have been now coined. The last generation to die.

I wish they could see the new world my generation has created. One where there is no race. One where there is no haves and have nots. One where everyone can slam dunk a basketball and no need for cars, I can run to California if I so wanted to.

I think my dad would really love it.

And I have found joy here, because that is how us humans are wired. We find a new normal and build within it to find peace.

We march onwards.

We progress!

But we now understand who is leading who. The world leads, the new humans follow.

Not just a new normal, a new joy

It’s a hospital week for Jacob. We are back in the city for Jacob’s last round of immunotherapy in his protocol. We did it.

Yesterday was the dreaded COVID test. I didn’t tell him about it until he asked, which was inevitable. 

“What are we doing at the hospital? Am I getting accessed?”

“No. Not today. We will be fast. Just a test.”

But he is one not to be tricked that easily. He knows the drill.

“I’m getting the nose swab for COVID aren’t I?”

“Yes.” I’m ready for it. I even get ready to cover my ears for the scream. Screaming is Jacob’s favorite parent torture technique.

“Ugh. It’s my least favorite.” And then back to his ipad.

That was it, but I knew better. And I start thinking about the bribes I can use when we get there as due to COVID I go alone and if he doesn’t walk…without Steve it is hard for me to carry him.

He walks in perfectly. Chatting away. I then find out that there is only one nurse available for his test. On average we have had three to hold him down or calm him down for the late anger that sets in. I know I’m in for it. How will this work?

But he sits down. He tells the nurse that he wants to count to 40 as that is his mom’s age (thanks Jacob…not everyone needs to know this). And I go to hold him down. I grab his arms. And he stops counting. 

“Mom just don’t hold me down okay? Promise me you will not grab me. Just hold my hand.”

I promise. And just like that he lets them do the test. He doesn’t recoil. He doesn’t scream and he stays perfectly still so they can get the other nostril.

I’m still bracing ready for the freak out, but Jacob’s says. “I’m getting better right, mom? I just wasn’t used to it like I wasn’t used to being accessed before. I just needed to do it a few times. It isn’t so bad. They should invent a way to do most nostrils at the same time. Maybe dad and I can make something!”

I share this story to remember it, but also there is a lesson here.

We tend to overlook the resilience of children. We tend to think for them. Putting our anxiety and our “knowns” on them, but it’s us adults who have the harder time adapting. We want our norm and even force the now to meet its expectation in our minds. We want control and we fear this new reality for our children. 

We worry. I guess that is our job.

We worry about their mental state during these crazy times. We worry about their academics. We worry about their socialization. Worried what message these masks give them. And the list of worries continues. 

But remember, children are adaptable and flexible and they will be alright. They will find not just a new normal, but joy and happiness in that normal.

And adding this video for a specific cancer dad right now. A cancer dad who just had their child diagnosed in this craziness. Who can only have one parent at the hospital during a time when your world is so shaken you need your partner more than ever. Who begins the “being accessed” experience. Two large needles going into your child’s chest. As you can imagine this is anyone’s worse nightmare. Natural response is to protect the body. A natural reflex is to scream, cry, and push away that needle. But look cancer dad! Look at Jacob now!

He is at peace.  He is in his new normal. He is not scarred for life. Your child will get there too. I know it seems unimaginable, but it will happen. With you every step of the way.

EMDR Update

2 steps forward, 1 leap back.

That is how the PTSD experience has felt so far. I had about 4 consecutive good days. I was ready to declare victory. Drugs win! I don’t need therapy, just a good dose of drugs. Or so I wished… but the crippling body feeling came back a few days ago and hasn’t gone away. Obviously, I’m very naive about this whole process. Or maybe just too wishful like Trump that it will all “just go away with the humidity.”

So today was my first EMDR session. EMDR helps deal with the original trauma moment when your brain was not functioning normally due to its natural fight/flight response. It helps reorganize the traumatic memory with the prefrontal cortex activated. 

I had to pick a memory that causes pain to start with. I picked Steve’s cancer. I thought that would be easier than Jacob’s. A good place to start. The practitioner asked me to think about the first moment I can remember regarding Steve’s cancer. I oddly didn’t think of the time when I first found out. When Steve first said “they found something big in my lung,” but it was the moment I said those words myself. 

I was on the phone with my mother and told her “they found something and it’s big.” And I remember the silence on the other end. My mother, not being one to not have something to say, was silent. It was brief silence, but I remember the silence. This was bad. I recall I was alone in my closet, a place where I was hoping kids couldn’t find me, and I remember realizing that this could be the end. And I sat in that closet. I didn’t go to Steve to comfort him. I can’t say I was wife of the year. I just sat in a closet and said to myself “they found something.” 

And then through the session other memories came up. Just popping. Like the call I got during Steve’s surgery telling me they want to take more of his lung than we discussed. Looking for my approval. Steve, of course, had thought of this possibility and spoke to me prior. He was very clear, take as much as they can. And then I felt such fear. Such fear. How would I live without Steve? I couldn’t even answer a question without knowing his answer in the back of my head. That feeling came back as real as if it was happening. That feeling of unpreparedness. Of inadequateness. 

And quickly then I recalled another moment that I’ve forgotten. After surgery we had a scare where Steve started not breathing well. Nurses flew in. Doctors. Alarms. He was transferred to intensive care. The whole time only thinking, “I need to get Steve’s parents here now! What if this was it? They are in New Jersey!”

I haven’t thought about any of this in over a year. There has been no space with Jacob’s cancer. There was no “post” to this trauma as it blended straight into another. 

But today I am starting this hard work. I can’t pretend this is fun. I am just telling the truth as many have reached out asking what EMDR is like. Well…it’s tough and today I’m teary and tired. It brings out things that you have forgotten, but I guess really haven’t. BUT I’m sticking with it.

Anything to be able to feel lighter in this body that has me captive.

I’m thinking of you, checking in 😘

Trauma vs. stress

That has been my big question recently. How do you know something is traumatic? How do you know if you have suffered a traumatic experience? 

Trauma happens when a person is confronted with a concept/ experience that is so foreign, it can’t be registered logically. It is something you can’t reason. It is something that has no previous example that you can draw from to inform next steps or calm the mind. And for that exact reason your body immediately goes into fight or flight. 

Examples can be as extreme as a car crash, being raped, or just as foreign, learning that your child with constipation really has cancer all over his body. But it can also be smaller.  It can be really anything that is foreign to you. It is subjective by nature. When these foreign experiences happen adrenaline starts pumping in your body. This hormonal shift limits the function of your prefrontal cortex. We can see this in MRI studies. The prefrontal cortex shuts down. It is postulated that this happens because this is an evolutionary advantage, no thinking is helpful, no time to reason, Run Forest Run!!! 

Now with the prefrontal cortex offline, the memories of this experience are not stored like normal memories. And therefore are not even retrieved and triggered like normal memories. Often they are disjointed and not whole memories at all. This explains why victims of trauma often can not recall entire hours of an experience. And don’t forget the physical energy these moments produce, adrenaline in the end is just an energy.  That energy just sits in the body for most modern traumas. Bombs exploding around you and in a bomb shelter? There is nothing you can physically do. Child being pumped with chemo? You sit in a chair and watch, still, non-moving. If interested in learning more about this energy I really recommend “The Body Keeps the Score” by Dr. Bessel Van der Kolk. Of all the books on this topic, this has been my favorite.

So using this definition of trauma, I realized something. You are all most likely experiencing trauma. Really the world is. This pandemic is 100% outside of our normal experience. There is nothing to compare to. Nothing. The news is scary and the isolation is real. Having kids to entertain all day long when you are going through trauma on top of it all too. And we know that uncertainty is the number one most anxiety proving emotion. So not only are you having trauma, you also are experiencing anxiety as tomorrow is so unknown. 

Oddly, I escaped this COVID trauma. Fearing the world making someone sick has been my norm. I have been scrubbing hands and sanitizing surfaces for over a year. Having my children out of school and lack of certainty of what tomorrow will bring (and at times questioning if there will be one) has been my norm. Nothing has changed from my day to day. But it has for the majority of you, if not all. 

And I want to be there as you have for me.

I have an idea on what we can all do. How we can all help. It started a few days ago.

I went to New York City to clean out the apartment as we contemplate renting it. We still don’t know what the fall will bring, but going back to New York City feels out of reach right now for our particular COVID circumstances. When going through drawers, I found a stash of “cancer artifacts.” It was letters, small tokens, etc. from you. All gifts from people reaching out throughout this year. I spent time touching each of them and rereading them. I could remember where I was when I received each one. And I can’t even begin to explain what they all meant. It was a moment when someone took the time to take pen to paper and buy a real stamp and put it in the mail to say that they care about us. Someone in their stressful life, took time to think of Jacob and me. It made me feel less alone.

I decided right then that I was going to write to all of these people and return the favor. But I couldn’t do it. The idea of writing and putting words in envelopes and getting to a mailbox in this COVID world felt too consuming. When would I do this? So I took the easy way out and just texted around 20 people. Total cop out. I can’t even pretend I took the time to write them unique messages. I wrote them all the same thing. I honestly felt pretty bad about it.

But the responses to just a simple text saying “I’m thinking of you” have been incredible and so well received. So thankful for the text. One oddly, though, was a bit complicated of an exchange, she was confused why I would hold on to such a little thing. Truly. It was belittling the way she made me feel about her letter. How maybe I was reading into our relationship. Why would I keep such a thing she asked me. And when I informed her that in my cleaning I still kept it, I think I heard her laugh.

How silly I must sound.

And it dawned on me.

I don’t think people understand the feeling of trauma and isolation. And I don’t think people understand how important feeling valued is. This is not just a teacher thing, this is an ALL of us thing. And this is something we all need to be aware of right now. That everyone around you is experiencing trauma and just needs some acknowledgement. That even a simple text can really brighten someone’s day and make them feel less alone. People don’t realize the power they have to give people the basic human rights they need for survival: food, water, shelter, and love (perceived value). 

So today I am starting a text campaign. I hope since I’m writing about it it doesn’t come off as disingenuous if you receive one. I am going to text 5 people a day to just check in. Just a “thinking of you” text.

I only share because I thought maybe you would want to join me. As most likely every person you know is experiencing trauma right now. Every person including you would appreciate feeling thought of, because no matter how rich/poor/happy/sad you are, we all are in a place of extreme upheaval and uncertainty.

The good news regarding this trauma is that it is a shared one. Unlike other traumas where it can be harder to reach out as you question if it is “your place.” This is all of our place.

So basically this is just one long text to all of Nightwing to acknowledge that you too are going through trauma and…

“I’m thinking of you. Just checking in😘”

The Ride

Yesterday we rode. We rode with the wind at our backs and adventured. No plans just the road. “Advenutring” as I call it, has always been my favorite drug of choice.  I discovered this drug at 19 years old when on Semester At Sea.

Always an overthinker. I would be worried about the next test or paper in school. Going in thinking I would fail, even though I was a straight A student. Or even overthinking friendships. Always super sensitive I would overthink what people thought of me. Full of anxiety about not being good enough or liked enough. 

But yet, drop me off in a country where I don’t speak a word of their language nor know my way around, I was full of confidence and felt right at home.  Being lost feels like being found. Truly. I feel my best when lost. 

So strange. I know.

But it is addicting.

It still is. I can’t help smiling thinking about some of my favorite adventures. Ones where you may end up in a field in the middle of no where in Russia making friends for a lifetime. Or randomly taking over a karaoke bar in China and become the Spice Girls for a night.  So many memories that were never supposed to happen. Never did I go into the night thinking I should travel to a rave in Russia with no idea how I will get home. Nope! That would be a terrible and dangerous plan. 

That’s the best part about adventuring! You are never off plan. There were no expectations to miss or exceed. Adventuring has no agenda.

Just the ride. 

Just the ride.

So yesterday, we got on a bike and we went adventuring. 

And as I sat there holding on to the back of the moped, I thought a lot about the “ride” of life. How in a million years I could never have predicted this ride. Even “knowns” like we will live in New York City. Or “knowns” that had a lot of evidence to claim as fact like “Benno isn’t a beach person” (and here he is surfing!), have all been disproven. Knowns like “my child will go to school like I did.” POOF. GONE. The things I thought I could plan, all gone.

So I guess it all is a ride. 

I don’t need to adventure far, it’s right here. Life. Everyday. A ride.

And I started to laugh in my head, GET ME OFF THIS RIDE! Can I get my money back? Is there a more calm ride option? Kiddie rides? Lazy river sounds my speed! But I took a second and thought about the entire decade. I took the birds eye view and I can’t believe I’m going to say this…I really can’t.

Maybe the ride is not that bad. 

I’m not saying I wished for the ride that includes two rare cancers and incredible stress and pain, but if I really zoom out, I see all the gifts of this ride. 

Or better said, this ride has a track. It seems so arbitrary but maye it has a path. Not mine to decide, that is for sure. But maybe every turn is a destination to be lost in. To then be found. 

Here is one of the places we decided to get lost in yesterday.

Shack we found! YUM
The mask plus the bike helmet makes a bad ass adventure look. Jump suits are always a plus!

So for this decade, I’m going to trust the ride. Less questioning. Less planning (that is for sure in these COVID times), just riding with a belief that there is a track under this ride. That there is a purpose that maybe we just can’t see.

Trust the ride.