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.

An Analogy of my Health

 

I couldn’t do it. I couldn’t get my ten day break from doctors, nurses and tests. I have a video appointment with a radiologist oncologist at 8 in the morning. Cha ching more money I have to spend. Whip out that debit card and pay for the doc’s Starbucks. I’m guessing it’s about this thing near my brain or maybe even talk about radiation treatments. I am going to tell him my fear of them. I m scared of radiation. It was the catalyst that killed my father in 1988.  Things are different. I know. But still.

I told my grandson about it and his reply was, “Geez, Nennie, you’re like an old car that finally went to a shop.”

What? OMG. Dude. Perfect Analogy.

That’s what I am. When asked why I avoided doctors for so long, I always said once they found something wrong they find everything.

I am that old car. That faithful car that takes you everywhere. It makes noise, but you turn up the radio. I am the car that passes yearly inspections from a local mechanic who tells you what minimum you need fixed, tires, brakes etc.

But imagine you take me, that old car to Firestone or some dealer …

Suddenly brakes and rotors. Are the least of your concerns.

They start finding everything wrong with your faithful 12 year old car. Everything.

This, this, this and this.

That is where I am at.

Every new test, every doctor, I get some new bad car report.

Only difference is I can’t trade myself in. I have to keep fixing what is wrong and hope that it stays fixed until another part breaks down.

And I haven’t even started the repairs, the list keeps going.

Can you tell I am having a frustrating day?

I am.

The bright spot to my day was a fruit arrangement that arrived. It was colorful, tasty and unexpected from my friend Stacy.

A gift to keep my chin up when I want to look down.

Five.

I will allow myself five down days. This was one. Four to go.

Extra! Extra! Read all about it!

 

Not sure how many of you know this.

I work for a church.

I create the screens that appear during service, I run sound and cameras and livestream. I absolutely love my job there.

It is spiritually fulfilling.

Yesterday was odd, because the congregation learned about my diagnosis. It was in the bulletin, in the prayers for the people, ‘Pray for Jackie.’

Like a little newsboy standing on a corner, hollering, “Extra, extra, read all about it!”

I debated on whether I wanted in there or not, but since I am there all the time, every Sunday I would think people would start to think something was up when I go bald.

My faith in the power of prayer is so great, I want all those voices calling out in prayer, but hey don’t forget others who needs it as well..

I kept it together. Our associate pastor wrote an amazing prayer for me at the service. I wanted to thank her, but I didn’t want to get emotional. I know, I know, tears are not a sign of weakness, but a part of me feels if I can fight them, that’s emotional strength training.

So my oncologist called me today. She had the results of my MRI. She started the conversation saying she had the results, but because her specialties are brain and breast cancer, she wanted to see the scans herself.

I was like, “Oh, gees what now.’

Apparently, unrelated to my cancer, I have a BENIGN small fluid tumor called a grade 1 Meningioma. It’s the size of a peppercorn, 4mm, and not on my brain but on the Menges.  Probably has been growing for years. She is not sure what she wants to do about, so she is consulting with her radiologist. She explained that it wouldn’t be surgery, but rather some sort of target radiation surgery that uses AI to zero in on it and blast the thing. Usually one and done. I don’t understand it, and honestly, I am tired of going down a rabbit hole with Google.

My writer mind kept thinking what if it isn’t a tumor, what if it is a place that all my characters and stories live and it grew because I have so many stories.

That is my update for today, thank you for following along. I love being able to share how I’m feeling. And today, I’m just a tad anxious.

But I am telling myself, ‘Step away from Google’! Algorithms already have my Facebook feed full of breast cancer stuff and wigs.