Give It a Day

The events in our life require emotional digestion... so to speak.

What happens in the heat of the big moments such as births, deaths, weddings, funerals, baptisms, graduations, reunions, holiday gatherings, and so on and so forth appear a certain way with a particular set of emotional perceptions.

The day following these big moments is a day of reflection. This is where the "digestion" takes place. All the elements of the event mixed together in memory, rehashed, recycled, tumbled through conversation, video and photographs. Over the next 24 hours, the event subdues, emotions settle, and the final recollection is stored for future story telling as "How it truly was..."

I needed a day to reflect on the trip to Boston. I needed to digest it all.

I dared not write so immediately. Initially, I felt like I had been shot out of a pin ball machine.

But why? What was it about this trip that left me feeling so battered? I gave it a day to think about.

This morning I had my answer.

This trip to Boston had a cumulative effect of the entire ordeal, the journey of one year and 2 weeks.  The new developments though not entirely huge in and of them selves were but a piece that sits upon a tower.

Our game of Jenga is getting tall...but it isn't a game is it?

After the day of digestion...and a good night of sleep...I feel renewed strength.

The journey, quite long now, is the same as always,
one day at a time. Today is the day we have, I am ever so grateful for that.

Stay tuned for more about the Boston trip.

Please Come To Boston : Take #7

In Search of Surgical Clearance and hopefully a whole bunch of answers.

He's a Cutie, see?... What QTc?

Baseline EKG

As part of the protocol to take Tasigna, Mando had to have a baseline EKG BEFORE starting this chemo drug.

Mando also had to have an EKG at 2 weeks after starting Tasigna. He had that yesterday.

Mando will have to have EKG's every 3 months while he is on this drug. Mando hopes to be on the drug indefinitely.

The reason for the EKG is to look at the QTc...to watch out for a prolonged QT interval.

Yeah, that's that Cardiac lingo I was talking about...It's all Greek to me. ( Can I still say that? I apologize if that's offensive. )

Yesterday during Mando's appointment we discussed Mando's baseline EKG.

His QTc was ALREADY prolonged.

WHAT THE HELL? YOU HAVE GOT TO BE KIDDING ME? What NEXT?

2 week follow up EKG

I have not heard back about yesterdays EKG yet.

We'll go for an echocardiogram in two weeks. They will take a look inside Mando's heart.

 I am certain they will see a heart of gold.  My Father had an enlarged heart. They said it was because he was an athlete. I knew better. I expect  Mando's to be equally huge.

Matters of the HEART

 I AM A NURSE.

Not just any kind of nurse, I am a psychiatric nurse...to the core. I take pride in that. I never planned on becoming a nurse. It is by far NOT my first career. I have no idea if will be my last Life is strange like that.

When I was beginning nursing school the instructor asked for the students to raise their hands for which field they should wish to follow, Critical Care, Labor and Delivery, Operating Room, Pediatrics, and so on and so forth.  The hands went up. When Psychiatric was mentioned I shot my hand up right quick and my rear end lifted a little out of my seat, as if I wouldn't get noticed out of all the others. I noticed a strange hush. I thought I heard one person giggle, so I looked around, my class.
No one else raised their hands.

I was alarmed. I let out a gasp and said "REALLY PEOPLE?!! JUST ME??? I THOUGHT EVERYONE WANTED TO BE A PSYCH NURSE??? Well, I'll be damned." They laughed, and so it was. I graduated and was employed right off the get go as a Psychiatric nurse and remains so to this day. It is my passion.

The field that bewilders me most, that remains beyond my comprehension is Cardiac. I am in awe of the cardiac nurse. I simply can't grasp it, never could. To me, a broken heart is, well the loss of one's love or purpose or pet. That sort of thing. A longing, an emptiness, a feeling of despair or regret or hopelessness about the fracture in one heart of hearts.

To the Cardiac nurse, it has something to do with atriums and ventricles, sa nodes and QRS complexes... oy vey. I mean I get it, but I don't GET IT  get it. It's difficult.

I have an abundance of admiration for the Cardiac nurse.

In my personal life, the heart is a spiritual vessel. It takes a beating...and keeps beating. sometimes it needs a great deal of healing. I keep rose quartz near my heart chakra at all times. Some people would think that qualifies me for needing a psychiatric nurse more than being one. My personal beliefs have nothing to do with clinical practice.

Often when I meet Mando's new doctors. They quickly come around to the part where they say "So I hear you're a nurse."

I always answer the same "I AM A MOTHER FIRST, nurse second. The mother part is the part you need to worry about."

What does this post really have to do with Mando?

HIS EKG...to be continued

Taking Ownership

Mando reviewing his blood work with Dr. Maria, his favorite oncologist.

Of the multitude of things that have surprised me much one stands out above them all as most unexpected

It was NOT Mando's ability to endure pain. Mando has known nothing but pain ever since the day he was born. It is quite normal for him.While I can not bear to see him in pain he can not bear the same of me. His endurance keeps my tears at bay and that makes him happy. At least I suspect that is how it works.

Likewise, it is NOT how Mando inspires others. Mando has also had this gift since he was a wee babe. His inspiration has something to do with his energy, his eyes, his smile, his essence. It's just Mando. It's nothing new.

No, what truly SURPRISES me is how Mando has taken ownership of his condition. Mando takes his chemotherapy on his own. He sets his alarm for his doses, He manages his fasting. Mando tells me when it is time to order refills. Mando also asks all of his doctors' relevant questions. Mando continually deepens his understanding of how his body works and how it could work better.

Given Mando's brain injury and developmental delay that might surprise anyone.  Mando puts 110% of himself into everything he does. He gives more than he has. He does it of his own free will. He is self-motivated.

Mando is not self-taught, however.  That's where we come in.

 As Mando continues to learn about his  various conditions we manage to teach him an ever expanding pool of knowledge without once having to use using the  C WORD,

OH NO,  NOT THAT  C WORD. That's my favorite word. We use that all the time.

The OTHER C WORD,  the SIX LETTER C WORD...NOT COOKIE, BUT THAT'S GOOD ENOUGH FOR ME!

Do Mando's Feel Pain?

My father, also Normando, called Mando by his mother spent a portion of his life feeling pain for a living. Or did he feel it? As a boxer, he exchanged plenty of punches to his fellow pugilist bout after bout but never said  "ouch".

My mother became suspicious of his ability to endure discomfort, One summer day my father was sitting on the floor watching TV. He had a sunburn. My Mom snuck up behind him and gave him a slap on the back. Sure enough, my Dad finally yelled "OUCH!What did you did you do that for?"

"I was just testing, I thought maybe you didn't have feelings. I guess I was wrong."

I am glad my Dad let her live. So I am here today and so is his namesake, Mando.

Normando Rubio

Today we went to his oncology appointment in Albany a day early. I thought it best to not try to go to this appointment on the same day as Boston. Batman wouldn't let me borrow his car and my broom only seats one.

We started off at the lab. Time to draw the monthly PCR and routine bloodwork. We'll see if the new chemo has budged the BCR-ABLE in the right direction. On this, we pray.

Seldom do we ever have to wait at the lab. Today there was another child ahead of us already with the phlebotomist. The child was screaming and crying and carrying on.

My heart broke for this little guy.  I started to cry. I forget how scary all this must be to kids. Mando makes it all seem so easy.

It's supposed to hurt?

Mando was in shock. It had never occurred to him to react to the various tests and interventions he goes through.

The little guy's parents seem to handle his tears well. Better than I could from the waiting room. I could do all I could to keep myself from running in the room.

Normando Mason

I wonder if it is not an accident but by grand design, we are put together on this journey in life, to compliment one another's strengths and weaknesses.

If so I am grateful for Mando being so strong for me. I couldn't survive if it were any other way.

When I tell him about his strength he says "Well, of course, look who I'm named after."

C IS for Cookie but it is NOT TIME for Cookie

I just came home from work and was greeted by Mando excited to hear about my day.  In an effort to make my transition home more comfortable Mando, always the gentleman, offered me a drink.

''Mom, would you like a can of seltzer or ginger ale?

"Oh I would love a lemon seltzer but they're in the downstairs fridge, do you mind?"

"Not at all" Mando smiled and bounced off but not before grabbing a soft chocolate chip cookie and taking a big bite to kick off our evening social.

Mando made it as far as the kitchen when he yelled back "Mom, what time is it?"

"9:30. Relax you've got another half an hour until your chemo."

"Mom...I ate a cookie"

"Yeah, I know, so wha... oh no... well I guess meds are at 11:30 tonight."

My Mom protested "For just a cookie?!!" (That's a grandma for ya)

""Yes, for just a cookie, He has to fast 2hours before and 1 hour after each dose no exceptions"

                             You can have your cookies but you can't eat em too

Luckily none of this bothered Mando in the least. He brought me my seltzer with a smile and knew the later med time means more time he can play PS4 with Mercury.

Who can sleep through this thunderstorm anyway?

Catharsis

"I know what you're going through Ma, I've been there before. It's like you hurt SOOO MUCH that you can't feel anything at all"

My daughter Alyssa was on the phone as she spoke these words. I had spoken with her many times since I returned from Boston and perhaps she had said them before, I don't know. I believe she was deliberately trying to shake me out of the stupor I was in. I was stuck in some form of robotic mother mode.

This time as I heard her say those words it was as if she had put a screwdriver in a lid of a can of fresh vacuum sealed paint. I was the can of paint.

"Oh, Alyssa...." I could say no more. I just sobbed. And sobbed. And sobbed.

"Oh, Mommy I know. I'll be right over" Alyssa hung up.

Alyssa arrived 20 minutes later with a  St  Jude prayer candle and inspirational
bookmark for me. She brought her four children for Mando. Nothing in this entire world makes Mando happier than other children.