The Good Book

"

Some Day, This Pain Will Be Useful To You..."

-Deanna of Walking Dead, Quoting Ovitz

To help the sufferers, to assist the survivors.

Pray4Jason-  The Book

Release Date Summer 2017

Knut The Polar Bear

I found this article which helps go into detail about Anti-NMDA Receptor Encephalitis. It goes into the technicality of the disease and shows pictures. It gets clinical to the point that your eyes may cross but if you really want to understand the disease - pay attention.

Knut The Polar Bear had ANTI-NMDA Receptor Encephalitis

Apparently Knut the polar bear had it and it caused him to drown. A polar bear who swims everyday drowned because of this disease. Let that sink in a little - and use your imagination as to what this disease can do to humans. The disease itself has not killed anyone yet. People have died because of all the complications that come up from the disease.

Fatigued

I haven't slept much the last few days. A lot is going on. Procedure was delayed again. I am upset and frustrated and there is nothing I can do. With the right last name I doubt I would be going through this. He was supposed to have this procedure done last Thursday but apparently that department is the busiest in the hospital. Jason was not considered an emergency. Here is sat in bed for another 5 days to try to be

Today You Don't Scare Me

The moss has grown to the point where The Invasion Of the Body Snatchers is almost complete. The difference between them and me remains that I am emotionally invested here. But my poker face is back today. I don't well up and cry when they tell me all the scary things they propose to cut or implant or inject with. I am not letting them see me cry today. Today I will not appear compromised and emotionally unstable because today - although on little sleep I feel sound. I feel able and I feel completely with it mentally - in the bizarre universe that is this prestigious hospital.
I am terrified.
The tremble is real and my insides are racing with anxiety that makes me wonder how I am still able to walk and talk. My words to them are deliberate and in a tone where theirs change depending on the way they wish to attempt to sway me.


I am making one decision today. The decision to agree to allow him to rest.
Once we clear the complications we will be gold.




Dear God,
By your stripes he shall be healed.
Amen.

Turning The Page on GoodBye

As my husband would say every time he realizes I have not written in a while, "not writing to them is like leaving them with their ass hanging in the wind."


I could not help myself. I am from NY and sometimes we need a NY minute. The PTSD is strong and I am wading through it.


Jason is coming home.


Today.


Reread that and let it soak in and then you will understand why I needed a NY minute. The recovery I promised has come. There is still therapy and mental deficits we need to watch for. He could have any number of issues now, ADD/ADHD/Dyslexia. We are getting him therapy to search these out and know if they are something permanent or temporary or if they exist in him at all.


The PRAY4JASON Book is coming Summer 2017 to help all of those with this damning disease and offer help and support on what to do and how to do it.


Jason is amazing. He is talking, and doing everything he always did. He was wheeled in to Blythedale Children's Hospital with a breathing tube and on a ventilator. Today he is walking out carrying his bag on his back.


Every day he takes my breath away. I can still close my eyes and take myself back to the day when I had no idea if I would ever see him again. The real Jason. The Jason that is telling me now that for the last 16 months I skated on his allowance.


There are not enough Thank you's in the world to express the love and gratitude I have for all of you: my beautiful caring readers. You have donated to his page, brought me food, sent me cards, wrote me letters, left your comments, and most movingly prayed. You prayed so hard for me to have back my boy - and you have no idea what that has meant to me. You were the strength that carried me at times when I was weak. Jason has made a complete turn around through the Grace of God and the strength and persistence of those that love him.


I gave my usual early morning call today Blythedale, to check on Bruce Banner. I cried with Amy on the phone. I realized today saying goodbye to everyone at Blyethdale is going to be super, super hard. I am going to miss so many wonderful men and women who took care of Jason and helped him under some of the most strained circumstances.


Jason w/  his second mom "NURSE JEAN" and his Fearless Nurses Aide "Diana"

. Preparing my eyes for all of the expected leakage. But I will spare you all that drama on this forum. This is the end. The last entry in the campaign to PRAY4JASON.


Amy, one of the amazing nurses at Blythedale told me she said goodbye to Jason just a few minutes before my call,
"Jason take care of your mom. She never gave up on you",she said between sniffles.


It made me cry, and I guess her words, as emotionally charged as they are, are the best ones for this moment:
That is how I am ending this blog.
Never Give Up.

God's Time

The day started, like most days of the last 16 months. As I stir in the morning to wakefulness I begin thanking God. I thank him for the morning, my life, my family, my health and I begin to beg for Jason. Even diagnosed with cancer, Jason's health is who I beg for. Everyday no matter what. I ask God to keep his healing hand on him because I already know that God's work is being done.

Jason text me. Then he called me. He wanted his bank card.

"Mom, I don't know where my bank card is. I think my social is..."

I sort of sat there. Frozen.

Up until this point, Jason has been coherent, but ADD. He has a thought and in the course of a sentence would lose"it" or change the subject.

He called the bank and understoodthe verification process and he needed help.

He talked to me for a while and every thought was cohesive and made sense. He was deliberate and thoughtful. Calm and collected in purpose.

It happened like they said. The doctors warned me this day would come. Coherency turned on like a light switch.

I told him I had to go. I heard it in his voice. His speech pattern and the tone.

For the first time in 16 months i just had a conversation with Jason. My pre-NMDARE Jason.

I needed to stop talking to him because the emotion was erupting like lava thru the crack this disease gave me a long time ago. I was happy, I was sad. I was relieved. 

I could hear the doctors in my head. "The psychiatric  part is one of the last things to go."

"It could happen just like that! Where one day he is just back."

This is it. After all this time. It is really over.

I was anxious. I wanted to scream. I had this feeling coming over me, that I havent felt in a long time.

I was so panicked I forgot to breathe

When The River Was Deep...

It has been a minute. I needed as much for a lot of reasons. The Good, The Bad and The Ugly all rolled into one until Good prevailed. As I sit here typing with tears in my eyes and a knot in my throat.

"Like a warrior that fights

And wins the battle
I know the taste of victory
Though I went through some nights
Consumed by the shadows

And was crippled emotionally
Somehow I made it through the heartace
I escaped
I found my way out of the darkness, kept my faith
Kept my faith

And the river was deep I didn't falter
When the mountain was high
I still believed
When the valley was low
It didn't stop me
I knew you were waiting

Knew you were waiting for me
With and endless desire
I kept on searching
Sure in time our eyes would meet
And like the bridge is on fire

The hurt is over
One touch and you set me free
I don't regret a single moment

Looking back...when I think of all those disappointments, I just laugh.

I just laugh!!!"

-Aretha Franklin and George Michael "i knew you were waiting for me"

Jason is taking his meds by mouth.

The G tube will be out soon.

Jason wants to come home.

Aretha Franklin and George Michael sang a song that sums up every emotion right now:

"I knew you were waiting for me..."

I trusted God when my son was unrecognizable. I refused to "trust what I see" and I trusted in God.

I trusted what I believed. I believe in HIM.

When the valley was low. He didn't falter. Neither did I.

When the mountain was high, I still believed.

I always knew in my heart of hearts. My son, the boy I raised, the boy who just text me if I could bring him some milk- "was waiting for me..."

I Left My Aviators

This is how much I don't think of me. When I was only thinking of Jason, my aviators were always at the collar of my shirt. Waiting for any moment of eye leakage or the emotion that rides my face when I don't know it. I can hide my scowl, upset, and worried looks. But of course. The dam must have broken and I moved a notch on the grief scale.

I read something today and I cried. I cried a long over due release of emotion and 34 minutes later I wasn't completely finished but I needed to board a train and make it into work. 

I needed to move on.

But I left my fucking aviators

Because God is Good All The Time

Praise God for all of his favor.

Test of Patience

Jason is having a setback. Please pray. Don't just say he is in your prayers. Please mean it. Have the dialogue with God. When the chorus of prayers started, he heard you. I need him to hear you. I need you to be loud.

Please.

Welcome To The Abyss

It's endless.

It is.

From daily life to scheduling doctor's appointments for the best specialists for not one but two very distinct diseases. I want to be Negan-like ruthless in my pursuit of scans and second opinions and doctors that can help Jason and now help me.

But I find myself more like Rick. 

I am tired.

I have a second opinion weeks away with one of the best. I worry what the cancer is doing inside me until that time. Worrying is praying for something you don't want. So I convince myself that I am not worried. I am just overly conscious. Conscious that a foreign item I have no control over has Insidously housed itself inside me. I have to be patient in finding the exact way to take control of it.

Cancer doesn't hurt. That's a fucking lie. Pain is what started my investigation that found it. 

I have check-ups for babies and my self and the husband and all these extra scans that will make me glow in the dark eventually. I am hyper sensitive on both ends of the spectrum because I can't move on the grief scale from anger.

I am grateful to God for the revelation of what I carry. I am grateful for the help and everything I received to help Jason make it this far in recovery and I pray so hard for more, to finally get him carried over the threshold to conquering this crazy ass disease he has.

Even with all my gratitude for every blessing - I am so angry.

I just don't know who I am mad at.

Sore Loser

We stepped back a little. Jason's Hallucinations are up. Nothing horrible, (yet). A gentler, calmer hallucination. The problem is, a step back puts us all at edge and less at ease. We have seen the other side. We are all terrified of going there. Hallucinations are usually the precursor to a more ominous Jason.

In other news...

I have a chance at saving my kidney. Laparoscopic. See usually at this part I would say I am already fucked you can't be more fucked -but apparently you can. I can live on half a kidney if need be, and so far I have a spare. If I remove this entirely and something forms in the other that is where the "more fucked" option comes in. So at this point I am making every effort to save it.

But the terror doesn't come in that. The terror I have right now is going offline. Not being able to be there should this ominous warning from Jason's psyche produce something more. No one in this world loves Jason as much as I do. No one in this world could understand.

Thinking about him going full hulk and needing the hospital to subdue him the only way they possibly can with cops and sending him out to a hospital that I cannot run to is killing me more than any cancer could. Thankfully we have not come to this. But I need to make every effort not to.

I usually do this unmedicated. But now I need the meds. Now that fucking crack in my psyche is oozing and my poker face has eyes that glisten uncontrollably. I still don't cry, but I definitely can't hide the emotion as well as I once could.

It's a lot to hold in. Imagine holding back a tidal wave with a screen door...

You got me. You got me good. You blindsided me while I was in the middle of a war with my son and reminded me I am mere Mortal. I always thought Jason was my Achilles heel, but apparently I have  another. 

There are many levels of pain, and when you think you reach your threshold, you get reminded there are more.

If you ask me my programmed response is "I'm ok" The second response "I am alive"

I can't admit that I am actually a mess in the middle of two wars: one for the life of my son and now for my own life.

I am in no way shape or form prepared to lose either. 

Party All The Time

Jason called me from the hospital last night at 10pm. He was dressed and letting me know he was going to "the party". Hallucinations holding on a bit too tightly that he is still in college and chasing girls. Not in an in-patient facility with A Gtube. He dressed himself in street clothes and was getting ready to hit them streets.

Me: Jason you can't go I told you, it's Wednesday. 

Jason: so I don't have class tomorrow.

Me: I said no.

Jason: what do you mean I am 18! You are so annoying! (Click)

He wouldn't answer my calls after that and turns out The CNA was able to talk him out of it.

I relayed the conversation to Carmelo and we both kind of laughed. I squinted my eyes at the ceiling:

"THIS AND CANCER Bruh?!"

Dayum.

Dark Sense Of Humor

"Worrying is like praying for something you  DON'T WANT To Happen."

Best advice In The FREE FUCKING WORLD.

A Post That Has Nothing To Do With Jason...

I think "What?" Is the most annoying question. It's infinite in answers. You never say it because you didn't hear what someone said. You heard them. Just what they said caught you off guard. It knocked wind out of you or punched you in the chin and you did not expect it. What could be the start of any number of confusing things someone wants to know and no matter how many ways explained can still cannot comprehend the answer to.

I have been sick recently. One of those things you can't seem to brush off forcing me to go to the doctor. I don't have time to wipe my ass in peace much less find time for a doctor for me. I have Jason, a husband and two little ones who need so Much I will cut my left arm off and feed it to them before I take a morsel of food to my own lips. What makes you think that a pain or cough of my own would have me scrounge up enough time for me to go to a doctor?

But I digress. I did. While searching for one thing. They mistakenly and thankfully found another. RCC. Renal Cell Carcinoma. Newly diagnosed, still wading through the water to figure out- the whys and the wherefores- but it leads me back to the opening of this post:

What?

I like doctors who are direct. Hurt my feelings in a business tone outright. This way I'll expect it and not be hurt further later.

What?

I have (3) kids at home. I don't have time for Renal Cell Carcinoma!

How the fuck did I get that?

What?

I called 3 of my oldest friends. After I told each of them they all ended the call by telling me they loved me....And I was able to bullshit about it. Like a normal person, pissed about the day- but I'm pissed about my life...

- so like going thru all this shit does it means I am God's favorite? Like its Jesus, Job then me?

- like can I take knee? I am really tired and sweaty from playing and I would

Love to just take a knee and step out of the game for a minute... Ya know?

- my son get's a rare brain disease that is 90% towards only attacking girls, fights for his life for a year now and by the way I got cancer...

This blog is like church to me. I come here when I feel bad or sad and writing stuff sometimes makes it better. I don't read comments. Not looking for advice. Just not holding it in...sometimes...because I just...can't...cry...anymore...

These words are my tears...

Jason is getting better. And the world goes round. 

You Have No Idea What You Can Do For OThers

This is the Star of Daredevil the TV Show with Jason. Jason has been ridiculously happy all day...Thank you so much!

Radio Silent

On the 1 year anniversary of something you usually celebrate. When you think of an anniversary you imagine there should be some sort of joy. Right? Yesterday I preferred radio silence. I didn't post because I was searching for Zen and absorbing life as it is now. Jason text me and he facetimed and I had to end the calls quickly because he is so much like "MY Jason" that I want to burst into tears and wail. He is playing Xbox and asking for money, and asking for clothes and doing every pain in the ass thing Jason circa 2015 did before he got sick. Yet in my mind's eye Jason all plugged up in ICU was just yesterday and I am afraid. I am afraid to accept this and be happy because what if I wake up and it isn't real?

So I am doing what I know how. Walking dead style. Getting up and doing what is expected of me. Not really knowing how, but understanding why. Work, babies, school, home and taking it one day at a time. Being a consistent drone about real life. The only way to live right now is to be   For lack of a better term: mechanical. Maybe one day this NEW normal will be normal and the shock of acceptance will have faded away and I will just live and love my old/new Jason.

It's really all I can do right now. It's all I can handle.

Close To The Vest

The tears can't come anymore. It is almost like the faucet broke. The emotion is so deep it starts with a rumble deep within that culminates into a shake. My heart goes off beat, that's how strong the vibration is. My eyes can't focus. The rumble is too close to my ears. I read Dr. Vargas' s note and my eyes glazed over. I was blinded for a moment.

Tomorrow makes 1 year since this started. 1 whole fucking year. A year not being able to breathe. A year of drowning. A year of begging and pleading. A year of tests and scuffles. A year of blood. A year of sweat. A year of tears. On the 3 Hundredth and Sixty Fourth Day God loosened his grip on my throat and let me breathe. The air filled my lungs as if for the first time in my life, filling every pocket, every bubble. Giving me a relief so powerful I can only shake. She gave me news, I have waited to hear for Three Hundred and Sixty Four Days. News they always promised me would come but never came. News that has been close, but never, ever here...

Fantastic news 1 Day before the birth day of this fucking spawn of hell disease:

Jason's titers...

Jason's blood...

Jason's behavior are finally all in alignment.

Jason disease is on its way down. Lower than it has ever been. Jason is getting better.

The Cosmos And All Its Wonder

There is so much I don't say. As I put the book together I wonder if that is the place to release it or not. Jason has the lowest levels he has had since the disease started. He's pseudo Jason still, not quite Jason circa pre Oct 18, 2015 not exactly Bizzarro Jason of July 2016. Instead he is this calmer and gentler Jason that is trying really hard to get back to normal.

He is eating. Loving homemade meals and having helpings of seconds and thirds. Still with a Gtube in his stomach and taking meds that way. He finally stopped yanking it out. Finally not having too many cursing episodes and thankfully no hitting. The nurses were a little hesitant as some of the old rotated into new schedules with him but now they see. He can be given a little trust to stay human at the very least.

Thank you God for all of your Grace.these days I never thought I would see. My heartfelt gratitude for all those who have prayed for this time to come.

The Beatings Will Continue Until Moral Improves

I remember the heading of this post from a vacation I took. I always thought that's where my parents got it from. Now I think maybe that should be the NMDARE moral. We are back for round 2 of Retuximab. We will continue with chemo until the disease is beaten back into submission. This time it was in an infusion center. Everything about this visit went so smoothly I still think I dreamed it. We got their by ambulance, was put in a small private room, got the transfusion and left. No incident. Jason was calm the entire time. I ordered him His favorite Spanish food and I got him a special treat. He asked for a haircut and coincidently my hairdresser is in the neighborhood. I made a phone call and got a local barber to come to the hospital and give Jason a fresh haircut. He looked amazing.Thank you God for all of your blessings. Please I beg you to allow them to continue.