Could I rock this Look?

 

I don’t expect many to read this today or tonight with it being fourth of July. But I thought I’d give an update.

Yesterday, I felt ok. Tad sore with movement. Today I went to get a Starbucks and made the fatal mistake of putting on a bra.

I took it off as soon as I got home. Tomorrow when I work at the church, I’ll shove extra gauze under the strap. I did discover when I changed the bandages that I have a huge bruise on my chest, I would take a picture but that would include my boob and I don’t want to get flagged for granny porn.

It’s about six inches long and four inches wide. I immediately hit doctor google and saw that it was normal to bruise and for it to even spread across the chest.

Other than that I think the stress of everything is making me tired. But I feel good.

I have a scan Monday morning and should be the last scan for 6-8 weeks. Then Tuesday, well we all know what Tuesday is.

As I said at some point, I was reading on the support group for this treatment that many women lose their hair shortly after the first treatment. So of course, I am on the wig journey and I have learned that you get what you pay for.

Two of my Shein wigs (Less than ten bucks each came in) and nothing like the pictures or the reviews! My Jocelyn wig (From, Schitt’s creek) Looks more like Debbie Does Dallas and my Merle (Devil wears Prada style wig) looks like Thelma from Mama’s Family.

The really good wigs are upwards of 400 dollars and some around a grand. My friend Jen said to reach out to the American Cancer society. So Tuesday when I see my oncologist I will get the required prescription for ‘Cranial Prosthesis’. I just want to be ready. I know Michele will come and buzz me but I will have spots. I want to wear different ones and have different personalities.

Another friend who has been there done that with BC, mailed me a box with wigs, caps and scarves, it should be here this week. I am excited. And I promise once I get them all together, I will post pictures of me in these wigs. Including Mama’s Family.

For now, I think I’ll watch some drag queens youtube videos on making a cheap wig look better. If I succeed. I’ll post pictures, if you don’t see pictures, then Mama’s Family Wig was helpless.

EDIT – Epic fail, even tips from the best drag queens can’t help. The only thing that makes this wig look better is a hat.

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.

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!

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