Vein of my Existence

We’ll call her Mary (Not her real name) She was something out of Mr. Rogers neighborhood. She was my nurse today. I had two. A pre-op/post-op nurse and an operating room nurse.

Mary was a great mixture of Miss Rachel and Mr. Rogers, probably more Miss Rachel.

You know what? I’m gonna call her Miss Rachel. And I mean that with utmost respect. She was kind, upbeat and perfect disposition.

Today went well, usually I write my blogs around midnight, but I am writing this now, because at 9:00 pm, the numbing agent is starting to finally wear off and I can feel the irritation and pull now. I had a good go. They said 4-6 hours, I got ten. Then again, I took a two hour nap.

I had a hard time sleeping last night, as you can guess.

I fell asleep around 330 and was up at 5:30. I wasn’t nervous or filled with anxiety, I think I just wanted to get it over.

I had to drive into the city and be there by nine. My sister came with me

When it was time, I was greeted by Miss Rachel, and not just a friendly hello, she smiled widely and hugged me. She took me and my sister back into another waiting and changing room, asked if I needed help undressing. I said no.

Then to an exam room. Where she did the vitals thing, put an IV line in my arm, then cheerfully explained the procedure. She told me that I would get a local and mild sedation, then said in the up voice. “You’ll be awake but not remember the procedure.”

“Does that mean I won’t be sleeping, I can be talking.”

“Yes, but no worries, you won’t remember what you said.”

UG. No. Immediately thoughts from my writer’s mind took off. Would I talk about Beginnings, Frank and Joe. Good God, I mean, I am always thinking about what I am writing. What if I spew out I am planning of destroying Steubenville, and wake up to FBI staring me down.

Um, no. I’ll pass on the sedation, thanks.

She then said if I want they can give me pain medication.

“Will it make me loopy?”

“Possibly.”

“I’ll pass.”

She seriously looked at me and said, “Don’t be a martyr.”

“Oh, I’m not, I just don’t trust what will come out of my mouth. After about 40 minutes in that room I went to the OR. It was like sci fi, the table moved, this machine above me circles me. They painted me with this blue stuff. The tech complimented that I was the easiest vein to find in his career. Cool.

I was awake during the procedure, not sedated. And I still talked the entire time. I could feel the pressure of the procedure, no pain. They told me to pick my port music. I of course picked my favorite country/Cristian singer. They never heard of him. My OR nurse loved his voice and looked him up. She commented, “Wow he’s attractive.”

“Yeah, he’s hot. I met him,” I told her. “But he’s surprisingly skinny, like borderline crackhead skinny. No offence to anyone in the room that may be a crackhead.”

At that point I felt the doctor pause and she laughed loudly.

Damn filter on me again.

Anyhow it finished, I had more problems with laying on that table for an hour. My back hurt for at least an hour.

Leaving the OR, I took off my blue hat and decided to make my hair look crazy for my sister (Reenactment picture),
but Miss Rachel saw me first, looked horrified and was like oh, you poor thing, Let me help you.

She grabbed my arm to escorted me back to the waiting area where she fed me crackers and Pepsi. She said, “Sit here, when you feel steady, get dressed, but not before you feel steady.”

“Ok.”

“When I walk out of here you’re gonna leave aren’t you?”

I just smiled and thanked her.

Now to relax. I’m gonna kick back on my reclining couch,  I was told that was probably for the best so I don’t roll in my sleep. Binge watch From Season 4 and if I fall asleep, so be it. AC is pumping, I’m set up all cozy with pillows and a blanket.

Growing a Pair

 

It was a good day. I had lunch with my aunt and it was nice to spend that time with her, my daughter came too. It took my mind off of things.

Lots of phone calls from the hospital today.

The Port nurse called with questions and instructions. She seemed rather flighty to me.

My oncologist called to discuss next week’s treatments and said, “How about how great those Echo results were.”

My nurse oncologist navigator called to prep me with information for treatment. Apparently, I am going to be there this first time for HOURS.

And then I got the courage to call Steve. He had reached out to me but I just couldn’t talk to him. It was hard. It was Steve. Those of you who know me know how hard that was. He was also co-writer of my new theme song and said he would happily help record it.

I thought a lot about Ron Brown today, my kids’ father. How close we were and of course, how competitive we were. How he was such a huge creative influence in my life.

Today was the day for saying things out of the blue, I told my daughter, “I am going to live longer than your father.”

To which she replied, “Why are you still competing with Dad?”

“Because he’d want it that way. We always competed.  In everything.”

He was fifteen years older than me. That’s my goal at least!

Anyhow, I went to my son’s show tonight. I didn’t do stand up, I was in the mood to just watch. It was wonderful. Strangers, no social anxiety. A friend I’ve known for decades was there he had no idea what was going on with me and it was so awesome to get a hug that wasn’t sympathetic if that makes sense. Glad to see you sort of thing.

I realized tonight that my social anxiety has to do with facing people with my disease.

Family functions, church.

Speaking of church.

I think cancer removed my filter.

Not that I had much of a filter as it was, but now it’s gone. Almost as if I can’t control what comes out of my mouth. We were at church staff meeting and when asked my thoughts on the new, young Associate pastors’ sermon, it just rolled from my mouth in honesty. She looked at me with daggers and shock. I was being honest. I apologized for being blunt. But it was already said.

Before I could stop myself … I just started ranting.

I don’t like that side of me. Maybe subconsciously I am thinking life’s too short to not be honest.

I’m tired. I hope I can get some rest. 6 am comes early. I did write tonight as well.

Tomorrow … port of de insertion. Am I nervous? Heck yeah. I’ll fill you in.

Struggles and Weirdness

 I’m excited I wrote tonight in my newest book.

It’s hard to explain but sometimes I can’t concentrate too much for too long, I am constantly filled with thoughts and worries. You know it’s bad when I don’t spend an hour  a day on food porn. Yeah, that’s a real thing. I love looking at food.

Perhaps now that this latest test is under the belt it will relieve some pressure and stop the worrying.

What will the test show? What is next?

Am I strong. Yes, I am. I have a very matter of fact out look on this whole thing.

This is what it is. This is what I need to do. I am not scared, because I know I am stronger than this disease and so is my God.

Still there’s this new level of anxiety. Like, I was always an extravert. Now I don’t really want to go around too many people.

Birthday parties and family events are hard, especially when confronting people for the first time after diagnosis.

They are all kind and gentle, but they look at me with such pity.

Don’t pity me. I’m not dying, I’m fighting, I’m living.

My fight has just begun. I know this. And all of you will go on this fight with me. Watch me kick some ass. Be my cheerleaders.

I have four awesome kids who lost their dad and twelve amazing grandkids, Tons of friends and my readers … oh my God, I can’t tell you how much you inspire me.  I’m not going anywhere I have graduations to see, weddings to attend and books to write.

However, I can’t get over this social anxiety. This is new to me. When I am home, I’m fine. One on one … good. But bring a ton of people, I just want to run.

I feel like everyone is staring at me. And I haven’t even started looking like the chemo girl.

Tomorrow (Wednesday) I am going to go to my son’s open Mic show. See how I do in a sea of strangers. Who knows, I may even do a stand up set. If I do, I’ll video it so you can see.

Oh, shoot I had my EKG and Echo today. I hardly slept and was up at 6 am, four hours before the test.

I needed to pass this. I need to be strong enough for the Enhertu. And I got the results.

Everything about my heart is normal.

Such great freaking news. I said to my son before the results, ‘Every time I get a test or a scan, something bad pops up’

He said, “You need a W.”

A win.

Yay, the echo was a win.

Wednesday is staff at the church and my son’s show. Let’s see how that goes.

Thursday is my port placement and you will see a video of that. Not the placement but me going in. Unless they let me film, then in that case I will.

Until next time …

Strength from Others

First let me say thank you to all of you who are reading my blog. I honestly feel that as the night winds down I am talking to someone and they are listening.

Today was weird.

I woke up feeling, well, down.

I am woman enough to admit that I am scared about this echocardiogram, because I need my heart to be okay to be able to get this treatment.

I woke up this morning and the first thought that came to my mind was, ‘OMG I have this test tomorrow, what happens if my heart isn’t strong enough?’

It was a weird state of anxiety and panic, I never felt.

I read emails, wrote emails, read the news, everything I could think of not to think about this test. But it was there. Forefront.

This is important. I need to pass this test to get the Enhertu clinical trials.

I asked the oncologist, ‘what if I don’t pass’ to which she replied, we’ll find another way.

This treatment is miraculous. I can’t not pass. I have never woken with panic.

I plan to drink decaf tomorrow and not have my daughter drive me so my heart can relax.

It was a strange day of lots of things going through my mind.

Then I opened the door to leave for errands.

There outside my door was a HUGE box, all around it was marked ‘gift’. It was from a reader, a fan and amazing person, Carla.

The card inside the box held the words I needed to read. Encouragement, strength, you got this.

She sent me a beautiful quilt as you can see by the picture and snacks from Canada.

My anxiety day started to lessen and when I checked my mail box when I got home, there were three cards or support!

It was as if fate and God were telling me to Chill.

I read those cards, those inscriptions, closed my eyes and said a gentle thank you to God.

I know I am going to have bad days. This was one of those not so strong ones, but the moment I got down, I got signs. The cards, the box.

All of them uplifted me.

I’m still terrified about tomorrow, but I also  know, there is nothing I can do to change the outcome of the test.

No caffeine or Allie and her aggressive driving.

It is what it is.

Not in my head

So yesterday I wrote a blog. You may not see it now, I made it private. Basically, the blog was about how me and my siblings reunited after years. How proud my mother would be.

I honestly didn’t think anything was wrong with the blog, I really didn’t, but it bothered one of my siblings and the early morning text telling me about it, prompted me to make it private.

I wasn’t letting it take over my thoughts or make me feel bad, because I didn’t have any ill intentions. I have other things on my mind, it was my blog, my story.

But my story upset someone.

Am I mad about it? Nope. I don’t have time for that.

Will I tell the other siblings about getting the message.

Nope.

I don’t have time for that.

Nor do I want another rift, which we are healing as a family.

Moving on.

Struggles.

So I was thinking about my son’s show this up coming week. Nestled in-between the cardiologist and port placement. I always like to do stand up and I was wondering what song he’d sing for me.

Then in a weird switch of thought, I remembered Beginnings and a song I wrote with my husband at the time, as a Beginnings theme song. I went and found the recording from almost twenty years ago. And the words .. omg, the words are so fitting for what I am facing. Like I wrote my fight song twenty years before my struggle. That’s the name of the song, The Struggle.

If you want to hear it, you can find the original and bad basement version here.

I reached out to my kids. I asked them to redo the song so I can listen to it with each treatment,  Let’s remake this song.

It’s going to be my fight song.

If you don’t want to listen, here are the words.

 

[Verse 1]

So much has happened when I look back now

My heart has pulled it through somehow

Spirit inside of us that strives for life

It gives us strength and will to survive

 

[Chorus]

The struggle will become a fight

Will we beat it me and you

When the darkness becomes a light

Can  it pull us through

We hear voices, they are calling us

Can they be a friend

Do they tell us to quit right now or

Fight it to the end

 

[Verse 2]

Is this real., is that what we face

With hope we can find a place

Together there's more than meets the eye

It takes more than one to keep it alive

 

[Chorus]

And the struggle has become a fight

Will we take it me and you

The darkness of the earth and  sky

Has made us see the truth

And we see what we now must face

We listen as they speak

The voices that are guiding us

Are now within our reach

 

[Bridge]

Hold on

We have so much so much to do

Hold on

We can make it me and you

Together we are strong

 

[Chorus]

And the struggle has become a fight

We beat it me and you

And the darkness of the earth and sky

Has finally pulled us through

And the voices that are calling us

They become our guide

We can move the heavens and the earth

If we all stand side by side

A Ray of Light

 I got some good news. It put me in an immediately good mood. As many of you know I am severely under insured, I was paying $100-$150 every appointment as a co pay.

Wait.

Good Lord, if I am paying that much, how much is the doctor charging.

Anyhow, many people do not know this, fortunately I have a friend who work for the state and told about BCCPT.

According to google - The Breast and Cervical Cancer Treatment Program (BCCTP) is a Medicaid initiative available in all 50 states and Washington D.C. It provides free or low-cost full-scope Medicaid coverage for uninsured or underinsured individuals under age 65 who have been diagnosed with breast or cervical cancer.

It pays for everything. I mean everything, even reconstructive surgery.

I applied. Yesterday phone calls were coming that my insurance wasn’t paying for my port and I would be responsible for the $4000 procedure. My treatments would cover only 40% of the 9,000 per pop chemo. I felt as if I was financially drowning, And then …

An email from the social worker today. I was approved for the BCCPT. I will have full coverage, everything starting July 1^st.

I can not begin to express how happy that made me. I was worried, you know, four appointments in the next week, how was I going to do that co-payment. But apparently, I have to only do the co pay for one, on the 30^th.

It was approved that fast. I uploaded the revised paperwork on Wednesday the social worker submitted Thursday and was excited to tell me I was approved Friday morning. I don’t believe she knows how much this made my day.

So treatment begins July 7^th. A new treatment, once every three weeks. I joined a support group for this new treatment. Most women lose their hair within a week of the first infusion. I'm ready to rock the hairless look.

I plan on getting a buzz cut when it starts to fall out. BUT those of you who watched Schitt’s Creek, I am going to be Moira. I am going to have wigs and name them. Here's a link to her wigs. This is where I come to you. Help me pick out wigs. If I choose a wig you suggest, it will be named after you.

The picture is of me wearing my first Amazon Prime Day wig. I’m calling it Jen.

Let’s all have a great weekend.

Let's get ready to Rumble

 

A funny thing happened on my way to my Radiologist Oncologist appointment.

I missed it.

Not only did I sleep in and wake up ten minutes after the appointment, I wasn’t going to make it on time to the church for staff. Fortunately, it was fine if I stayed home. I called the radiologist scheduling and left a message.

About thirty minutes later they called back. No problem, the doctor was running late anyhow and could I make 11:30.

At that point I was positive I wouldn’t sleep in.

He did call back, it was a video appointment, and he thanked me profusely for being accommodating and switching my appointment.

Oh, sure doc no problem.

I couldn’t help but be distracted by the fact he was in a cage. Not like a dog kennel, but UFC fighting cage. An octagon or maybe a cage used at WWE.

He was seated, back against this fence. Young guy, probably younger than my sons.

Anyhow … as expected, every phone call, every visit to the doctor brings something new.

Apparently, other than the meningioma (Benign tumor) I have two spots of cancer.

He called them miniscule and was certain the Enhertu would eliminate them. He wouldn’t even call me if it wasn’t for the benign one. He doesn’t want to take a chance on it growing because it’s location. And he suggested something called SRS. He said, “One and done.’

Everything is so small even the benign one, but since we don’t know how long I had it or how fast it grows he doesn’t want to take a chance with it. His words, “If it wasn’t there, I would go with the chemo/Enhertu.  So we’ll zap it and hit the other two spots. One and done.”

Those are good words. What are not good words are telling your kids, as casual as possible they found two spots.

“Wait mom, am I hearing this right, you have brain cancer?”

“No, I don’t have brain cancer I have spots from my breast cancer.”

I know they hear ‘brain’ and think of their dad. I keep telling them this is different. I understand their fear.

Speaking of fear.

I have to get another MRI, a precise one because this treatment works in millimeters and the locations have to be precise. It will take fifteen minutes, I am told.

I conveyed my fears about being hit with radiation. In 1988 my dad got radiation and it caused a clot that cause a major stroke. After he stabilized from the stroke, two more treatments a clot hit his lung.

The doctor asked what area my father was treated and then assured me that not only was my area smaller and targeted, but radiation surgery and treatments have gone leaps and bounds since 1988.

I’ll hold on to that.

I won’t have the SRS treatment until after my first infusion. So there’s no urgent rush.

He asked, “Do you have any other questions?”

“Yes. Why does it look like you’re in a UFC Octagon.”

He laughed. “I am training as an MMA fighter.”

Dude, an radiologist Oncologist who likes to kick butt.

I’m all in.