Tests, Tests, and more Tests

Enhertu.

Look it up. That is what they are aiming for to treat this disease. As long as my echocardiogram comes back good.

Since May 30, my hospital admittance, I have had like two days when I didn’t have to get up early and leave, go to work, or deal with medical.

I am now looking at a stretch of medical freedom. Next appointment June 30th.

I am scared to be tired, scared to say I am tired because it makes people worry. But this is exhausting and I have so much left to come.

I am going to start adding videos to this blog. Maybe when I head into procedures. I know, I know, I have said this before. I mean it though.

I have done a lot of research on this treatment and while the nurses and doctor were confident I won’t lose my hair, it’s gonna happen. Most women do or go 50% bald. 50%? Who wants to have missing patches of hair.

I’ll buzz it and wear a hat or wig.

I’m too old to worry about how I look.

Plus, I have seen Threads and The Day after too many times to want to look like a nuclear war survivor.

Today was my brain MRI. I really, really didn’t want one, especially after Ron (My kids dad) but my oncologist was like, “This is not an option’. Apparently my HER 2 disease often drops some mets on the brain. Great.

She said no worries it will all the same genetic make up that’s in my breast. The treatment will target it.

First ever MRI. No one told me about them. I am typically not a high anxiety person, but this made me crazy. No music, just a loud bunch of noises for twenty minutes, Click-click-bang-bang-buzz. Then another ten minutes with contrast.

If you ever have seen The Strain, I felt like Gus’ mother when she turned. When he put the helmet on his mother.  Then it was like they were rolling me into a coffin. My writer mind kept thinking, what if this is all an illusion and I am in a coffin or being cremated.

Side note. It’s time to watch The Strain again for the eighth time.

If I have to get another MRI, there’s gonna have to be another way. That was horrible.

I really hope my heart is okay. I want to do this treatment. It’s so promising., I have high blood pressure, so suffice to say I am nervous. But that echo comes on the 30^th.

On the good news front, I have been very creative lately.

I finished the ten book compilation which I hope to be out tomorrow, and I wrote a demented children’s book.

These past couple months of worrying, health issues, waiting for appointments have slowed my writing process and as I said, that in turn slowed my income to almost a halt.

A Go Fund me is out of the question. I can work for it. I’d rather earn it. That’s the reason for the compilation. The Children’s book will be a special link. It will be free and if you want you can do the ‘Buy me a Coffee’ thing, if not, I’m cool with giving it for free.

I am so looking forward to the week free of doctors and nurses. I am watching 3 of my grandkids tomorrow. I know, everyone says not to, my friends with best intentions, but I want to.

The ones I am watching can get their own drinks and soon enough, when I start treatment, I will be tired Nennie.

No, wait.

I’m gonna defy the odds. Mind over matter.

I won’t let this bring me down. Yeah, of course, there will be effects that are not fun, but many people push through and keep working, keep going.

I will.

 

FEELING TODAY: I’m alright

MUSIC: Fix you (Cover) Boyce Avenue

GOAL: Write. Name my newest book.

Hope, Faith and Fight

 I went to the oncologist today. I got answers.

I’ll be okay. There is a treatment plan.

Before I get into it.

Stage four is not a death sentence. Let’s establish that. Maybe in 1990 or even 2000 it was. That was long before gene targeted chemo came about.

Just to educate, because I know I needed educated. I was still in that 1988 mindset.

Stage 1 – Localized Tumor

Stage 2 – Tumor reached tissues and surrounding areas.

Stage 3 – Tumor spread to Lymph Nodes.

Stage 4 – Tumor spread to lymph nodes and decided to sprinkle itself all about the body.

I have a Hormonal Positive cancer. HER2+ Stage 4.

It sprinkled itself, and I don’t mean that lightly. Most of the places the mets (As they call them) are small. The positive outlook to this and yes there is a positive, is that it is hormonal. Many clinical trials have been done.

I asked the oncologist, “Are there any trials?”

To which she replied, “I am glad you asked.”

She proceeded to tell me about a clinical trial that started five years ago and it specific for my type of cancer. The way she described it to me is this therapy goes into the blood stream, divides up and targets those hormonal cancer cells. Hitting them, destroying them, shrinking them, eliminating them. I may be on this for a long while.

It’s important to note that she was positive. She never once mentioned a ‘Timeline’ or how long I had, she called it a disease, not cancer, that we had to get under control.

I go every three weeks. This isn’t as brutal as regular Chemo because it is hormonal gene specific. I have 60% chance of keeping my hair. My navigating nurse told me, thinner and shorter hair tend to not fall out. The weight is not pulling it. So she suggested I keep it short like it is now. (Michele if you’re reading this, we need to stay on top)

I’m still  gonna be ready for wigs. Funny ones too.

How am I? I’m fine. I feel relieved and positive. I physically felt a heaviness to my body before this appointment. That’s gone.

God has this. God has me.

He gave me a sign.

I work for a church and have to go in two days a week. Wednesday and Sunday.

They told me today that Day 1 and 2 of treatment I will feel fine. Day 3 and 4 I will not, but will start feeling better by day 5. Then two weeks of good and start all over again until after 4 treatments and my body gets used to it.

I then was told my Chemo would be on a Tuesday every time. Meaning I should feel fine Wednesday and Better by Sunday. How’s that for a sign. God wants me to show up for work!

Honestly, I am not doomed, nor do I feel it.

I’m a fighter and pledge to fight. For my family, friends and readers.

I don’t feel sick, I feel strong and I just ask keep the prayers coming. I believe they help and work!

 

No song today but I will say, I feel confident!

Preparing and Waiting

 So here we are. 48 hours from finding my fate of treatment. That is a heavy load to carry, emotionally. The worry is a lot. I’ve done a lot of praying and I know it is, what it is and nothing I can do to change the past on the future.

I wonder if Tuesday is the day I will cry about it. I haven’t yet. The tears I have shed have been tears of being touched by the outpour of love and support of others and the moments when I think about how I am never going to be able to afford the care to get well.

Hopefully, I’ll get approved for the supplement.

I don’t mean to be such a Debbie Downer, I am trying to keep these blogs hopeful and light, but I want everyone to know what I am feeling and going through.

Eventually I will do some video reels.

I don’t know what Tuesday will bring. I stopped checking my app to see if biopsy results are in. If they were I am sure I would google and put myself in a state. I’ll let the doctor tell me.

I am giving it to God to handle my fear of finding out that there’s nothing they can do.

My friend, Katie assured me there will be a plan of action. I pray that all the stories I hear about the advancement of treatments are true.

I know I’m rambling and rattling my emotions. I am sure these blogs will get more intense

Today was a good day. I mean it really was. I worked at the church and it was candidate Sunday. Meaning they found a permanent pastor and the mystery pastor came today to preach. This person was invigorating and the energy in the church was amazing.

Again, a goal. the New Pastor starts in July and I am so excited to work with them. I love having goals.

So many people have been so kind offering help. I plan on taking people up on that. I really do, so if you offered don’t be surprised if I call.

As for now, at the time of penning this … I need a nap!

 

FEELING TODAY: Worried but Good

MUSIC: Brave by Sara Bareilles

GOAL: Format the Broken Compilation

Best of the Breast

 

The countdown is on until I see my oncologist on Tuesday. A slew of situations and things she will say rush through my mind, most of them not good. I find myself googling far too much. This week was a  doozy.

PCP appointments, nurses coming to my home, and that rash that turned into a sore, then turned into a wound after the hospital got done digging in there, now has me going to wound care. Did I mention I have to wear a ridiculous compression bra 23/7. I get one hour off.

More cultures and tests this week. All of the results come in Tuesday.

Tuesday. Tuesday. Tuesday. UG. Like a monster truck commercial.

I will say this …. The doctor and nurses at wound care were the most encouraging and gave me success stories of women who were far worse than me.

What I have is more common than women know. They told me this, and I met a woman in a breast cancer support group (I’ll call her Martha) who posted pictures of her journey with the same thing.

I was glad to see her pictures before and after. Her journey was eight years ago.

I did decide that after all this, after treatments, like Martha I’m cutting off the girls. They were never really big and right now they serve no purpose. I don’t foresee anyone wanting to fondle them in the near future. Nor do I want them to.

I look for inspiration anywhere I can find it.

But I have to stop because I am driving myself nuts. So yesterday I started focusing heavily on creativity.

I finished a chapter in my newest book, whittling away skillfully toward an end. YAY.

I started putting together the compilation called, Broken: Ten Complete Novels of the End of the World.

And I wrote two songs.

Music has always been pretty easy for me, coming up with lyrics and a melody.

Laying down tracks as well. Heck, I won Best Music in three short films.

Working on the tracks to make them perfect and then my kids’ dad, Ron would totally redo it. I can’t really get upset about that, the one song he did, won best music in another film of mine.

Anyhow. I found a bible verses and used them to inspire the lyrics to each song. Used my keyboard to write the melody and rough chords then cheated … I uploaded my rough music and lyrics into a music AI app. Okay, okay, don’t hate me. I’m not releasing the songs. I did it so I could get an idea and give it to my son to play with and he can record. I live in an apartment, it’s not feasible at one in the morning to play music.

My grandson came into my room and yelled at me for using it. But it sounds cool.

And I did write the words and melody. I’m being creative. I’m focusing. More tonight as well.

But first…. time to turn the tater tots.

FEELING: Inspired and Creative
SONG: One of the new ones I wrote
GOALS: Finish the Compiliation

Tough Day

Yesterday was tough. Not physically. It was more of a reality tough deal.. It wasn't my sickness but everything leading up to it. I realized that I have been so focused on everything the last few months I have nothing self published coming out. That is my main income

That combined with the fact I am severely underinsured just hit me hard yesterday

I hope I can get approved for this breast cancer special insurance through the state because mine won’t cut it. I got it through marketplace

People are quick to ask if u need help, but I don’t want to go there. My best solution albeit delayed 60 days with Amazon pay, is to get work out there.

Instead of rushing to finish the new book, before releasing it, I’m gonna do another budget compilation

They help. If I can get some people to buy it then in. 30 days I’ll attempt to do a book bub and get the boost I need

Yesterday was tough as I paid another copayment but today I have a plan

FEELING TODAY: Fighting

MUSIC: Honey, Honey pie (no significant reason other than it’s playing on the Speaker in the waiting room)

GOALS: get the compilation together

Step by Step

After the first doctor and her lack of professional reaction, it was really awesome to see a PCP that was so chilled and laid back.

I needed that. I am now mentally preparing for what Tuesday at the oncologist will bring.

What a difference a week makes? Right?

I am questioning myself. Is what I portrayed as a wall of strength real or a front.

I’ll find out.

I am a woman of tremendous faith, I always have been and more so the last decade. I believe. I believe in a higher power, God or whatever name you give that power. I am inspired and moved when I watch the foundation of belief and see people so moved that I feel their faith.

Music videos showing this have given me strength.

A week has passed since I was told I have cancer.

A week of shock, never denial. Things are settling.

This is tough. I have successfully avoided googling things and honestly I don’t want to.

Today at the church staff meeting, the pastor prayed for me, she broke down and cried.

My God, the people that care about me.

I have yet to cry. I got a twinge of misty eyed at her prayer, and it took a lot not to cry, but I wanted her to see I was strong.

Because I am.

The prayer however moved me, it moved me because I felt the prayer. I can’t explain it.

When my grandmother was ill, she called me and said, “Jackie, I firmly believe you have a direct line to God and he hears your prayers. So pray for me.”

I carried that with me.

At this point in this juncture, my prayer line is sorted of muted. I feel it. It’s up to others to pray and I know they are. When you tell me you are praying, I am so grateful, I can’t express how grateful I am.

The power of prayer is phenomenal.

It’s what I got right now. It’s what I hold on to.

So I know this blog post is slightly a downer, it’s not because I have given up, it’s because I understand the reality now.

I also understand the reality of kindness.

Wow. How each act recently has moved me.

My brother and sister have made me meals for the next couple weeks. Pop in microwave and go. And they are awesome meals.

My sister and niece both in healthcare come to my home to check on me.

I received a box of items from a reader of my work that will help me as I journey forward.

My former pastor called me to have coffee. We met it was wonderful.

And my friend Michelle couldn’t bare me having a super cuts haircut and came over yesterday to make my short cut look awesome …. As short lived as it is.

I am doing everything one step at a time, One day at a time.

I keep telling myself I got this.

I do.

 

FEELING TODAY: Tough sort of.

MUSIC: Shout to the Lord

GOAL: Make pickles because I love them (Done)

Hands Down

 

One of the things I wanted to do with this blog was not just make it about my medical journey but by mental state., My whole point of this is for those who do not know me, you can travel along.

Today I was tired. I don’t know if it is a mental thing or physical. Because I had a doctor’s appointment I woke up super early because the in home nurse was coming.

Okay so why is my nurse male?

He’s nice and all but it still shocks me.

This totally is messing with my routine. I am not used to people coming into my home, I didn’t ask for it, but now I am stuck.

My nurse is nice, he really is. But I have a sister and niece in healthcare who could do the same. Anyhow, he came, I got ready and went to the doctors.

It was a normal PCP visit.

Years ago, when my insurance was the bomb, I had a PCP.  After losing insurance I replied on video doctors. They ordered blood work, x-rays and medication.

After being released from the hospital they asked if I wanted my information sent to the PCP I had years ago.

Sure, why not.

I am glad I did.

Walking in there today was calm and a blessing. He was so chill and laid back I had forgotten why I went to him years ago in the first place.

We really didn’t talk about the cancer, he mentioned that was for my oncologist appointment next week. He talked about me keeping healthy.

I felt good after the appointment, but in the back of my mind I knew the oncologist thing was coming up. Am I nervous? Absolutely.

After the appointment today me and my daughter went and got sushi. It was a super nice lunch.

I got Saki. The sushi lunch came with soup, but I knew I wasn’t going to eat it all so I put some in a Saki shot glass and sipped.

Listen, this is a boring blog today. I know. I did try to write. I want to finish this current book so I can get to Beginnings where I know I will feel relaxed. Maybe it is timing. Maybe I am supposed to go to Beginnings when I mentally need it most.

All I know right now is this all sucks.

It sucks.

I am keeping it together as best as I can. I am pulling strength from friends, people that have been where I am and most of all, God.

There are people I have spoken to that have undoubtedly given my strength and have been delivering hard truths about what I have to face.

I know I am a strong woman.

Today though was a tough day. I don’t know why. Nothing unusual happened, I just didn’t feel as strong, Maybe the  shock is wearing off.

 

FEELING TODAY: Teetering.

MUSIC: Higher by Toby Lightman

GOAL: Write 1000 words tomorrow.