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.

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!

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.

Open and Public

 

My grandson just turned seventeen, he’s my oldest. I was young when I learned I was going to be a grandmother, but he came at a time in my life when I needed hope. I always said he saved me. He lives with me and is a tremendous gift. He drives me nuts and argues with me, but he saved my life once and I have no doubt, holding on to him will save me again.

I was talking to him about my Negan picture battling the cancer cells and I mentioned making a picture of having the Avengers do the same. Create pictures to give me encouragement.  He just looked at me and was like, “Why?”.

He said, “Nana, your heroes are in Beginnings. They pulled you through your writing, why not have them be your heroes pulling you through this.”

He is right. I love and live Beginnings.

Frank is my hero. So I decided, even though it’s AI, to use my Beginnings characters to create images of them being there for me.

And with his words I am inspired. I want to finish this current book I am writing and get back to Beginnings. I love being there, writing it, it is my happy place and God knows I need it.

I know it sounds silly to some. A fictional world, my imagining them being there for me. But after 35 books, they are real to me.

I need them.

Today was my first day back at working at the church. I told the pastor not to make it public (My diagnosis) but she could let the prayer team know. I didn’t know how many people were on the prayer team until I got there this morning and so many people came up to me, hugged me. Surprisingly, I kept it together.

I felt their strength and love.

Ya know … and anyone that reads my writing knows this, I am a person of great faith.

God has this.

It was a tough day. Not that I had doubt, but emotionally, I hate that I am making people sad. I am that person that likes to make people laugh and smile. I’m not doing that lately.

I’m gonna change that. I have to change that. For me and for everyone else.

I’m not going anywhere. I just have a fight.

Tomorrow I have an appointment with my PCP. One I haven’t seen in years. (Thanks US healthcare system).

It’s the first of many appointments coming my way.

I may do a video!

FEELING TODAY: I'm okay

MUSIC: Soon you'll Get Better by Taylor Swift

GOAL: Get my ass moving and finish this book

Getting Help

 

Here I am day two of the journaling. In ‘timeline’ perspective I haven’t caught up to today. June 4. I figure this post and one more will catch us up.

I promised myself that I would keep this journal one 100% honest. No downplaying or leaving anything out. Tell the truth and do what I do best, make it entertaining.

If you read my work, follow me, then you know of everything I write, I love Beginnings. I love it dearly.

Everyone always assumed I put myself and personality as Ellen. The truth is, I am Joe.

Oddly enough, I gave Joe cancer in Book 15. It’s important to note that I am on Book 35 and Joe is still alive. The big difference is Joe was really originally filled with a lot of doom and gloom and this is my end feeling.

I am not.

So backing up. I had this problem. It wasn’t like I was living this ‘I feel healthy’ life, and go to the doctor and was godsmacked by the diagnosis of cancer.

I was living the ‘I feel healthy’ life, but it wasn’t an invisible thing. It literally was becoming more visible by the day. This rash to sore started getting bad. I held off. My bad. Can’t change that now. But by the time I had insurance and was able to start looking for help it was bad. Other things started happening that confirmed what I knew.

The hardest part of this journey? Telling my kids. I not only had to tell them I was hiding this medical condition but tell them I was certain it was cancer. They just lost their dad. I felt selfish and guilty. Each of them handled it in their own way and I have the greatest kids. That was tough. Telling my closest friends and siblings was harder because I had to hear the hurt in their voices. I told them after I got out of the hospital.

Insurance is funny, I just can’t go to a breast specialist I had to go to a doctor. Unfortunately I didn’t have one and ended up with a newbie, who literally was floored when I walked in her office and she looked at the sore on my breast. It led me to believe it was horrendous. OMG the way she reacted, like trying to hide fear while watching a movie on a plane. She sent me immediately to the ER. It was bad but, as I was assured by the ER doc, not like I played it out to be. Excuse me, I just had a doctor freak out. How was I supposed to think.

I knew what it was. When they did scans and just before they told me, I told them.

They loved my attitude and it was not a fake. I had lived with the knowledge of what my body was telling me for months. So it wasn’t a shock.

This is reality.

I got this.

I really do. And when people offer prayers. Heck yeah, I love it because I believe in the power of prayer. I work for a church. I want the prayer line to heaven to be o congested with requests for me that Jesus throws up his hands and says, “Tell these people I’m on it. She works for a church, we already have her in.”

I started my fight. Even before the Chemo. I envision mini Negan’s in my blood, swinging his barbed wire bat and hitting the  cancer cells.

Tomorrow the story of my hospital stay. I promise it won’t be depressing. Oh my goodness, the woman in the room across the hall!

 

FEELING TODAY: Confident and Good

MUSIC: Living Hope by Phil Wickham

GOAL: Watch an episode of The Studio