Ug ... When You're sick, You're sick

It finally got me down.

Physically I mean.

Sunday morning, I got up. I was fine, it just takes me an hour to feel motivated. I went to work at the church. Went to Starbucks, did my Walmart Grocery order and was fine, I wasn’t hungry, I did force some soup, then I took a nap.

That evening about 7 pm, something was off. Sniffing alcohol wipes didn’t help and I wasn’t feeling well enough to drive to get a frozen coke. Which by the way really do help me.

Around 9ish, I am at my computer and a wave of nausea hit me like I hadn’t had yet.

Next thing I know I am in the bathroom, sitting on a little pink stepping stool and embracing the porcelain throne as if it was a long lost friend.

I felt so sick. I didn’t want to take the Compazine because it makes me tired, I have this fear of vomiting in my sleep. So I held off. I had one Zofran and took it around 11. It worked. Didn’t make me tired. I still wasn’t very hungry, but I ate some soup.

They called in a prescription for me.

How do I feel now twenty-four hours later. Good. Much better. Even different.

A friend asked me if I could feel the chemo in my body. After a brief pause, I answered yes. Because there’s a feeling, an emptiness, almost hollow feeling, a vulnerability, that courses through your veins. It takes strength from you but you know that strength is working elsewhere in the body.

A mixture of pre-stage jitters and hunger.

Sort of like the body is short staffed at a restaurant because all the really strong parts are working elsewhere.

It’s only been a week and I am still figuring this out. Again, hating to beat a dead horse, that CT with oral contrast the day before my first infusion didn’t help.

I am glad I was able to work all week, that I pushed through.

I really, really hope I reached a turning point. It’s horrible knowing you feel good and waiting for the shoe to drop.  It’s coming. It’s coming. It’s here, no matter how mentally strong I was, it caught me.

But as I told my son, if it was the worst day of the cycle, I did pretty darned good.

I’m learning what to do. It’s all new.

I just know I have to take it one step at a time. One day at a time.

Anyone watch the new Little House on the Prairie yet? I’m thinking of watching that. Also, if you comment, no need to sign in, just put your name or initials in the comments unless you want to remain anonymous.

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.

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

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

My Journey Begun

So, here we are.
Funny how writing has been hard for me these past couple months and now, the first thing that flows is about this stupid health crisis.

So how did I get here. How in this modern age of medicine did I, an intelligent woman, let it get to this point?

Oh. Yeah if you’re reading this is not knowing what’s going on. I have cancer.

Did I see it coming? Yep.

So before I begin the journey of beating this, let’s start with the journey of my ignorance.

FYI this entire journal journey will include how I am feeling, what my song is and goals.

Back to my story.

When Ron (My kids dad) was sick and at the end, I found the tiniest little lumps. Lumps are easy for me to find because I don’t have breast fat. Well I did when I was heavy.

Anyhow, back story, I have had over the years 5 surgeries on my left breast and lymph nodes. All BENIGN tumors and cysts, so when this one popped up, I didn’t think anything about it.

It went away after a few months. Yay. What?

Ok, so it didn’t go away, somehow like a freaking parasite it burrowed itself into my breast tissue. A few months later again, a rash appeared. Now I bathe, wash, never really thought it was that bad until well … it got bad. Then I faced the fact I didn’t have health insurance.

Now everyone is saying that shouldn’t have mattered. But it did to me. I’m a writer, money and income is not guaranteed and my kids just lost their dad.

I would get help. I knew I needed to. Finally during enrollment for open healthcare I was able to get a plan and then it was activated in February, and wading through Easter, I sought how I could get help. Nearest appointment was six weeks out. In the meantime, my writing was replaced with thoughts about this journey. And finally, when my underarm started to swell, I knew and I called place after place getting in quicker/ But not fast enough. Damn it I have a battle, but I never shied away from a fight.

Other than hiding my condition I hid it from my kids. I told them before the appointment.

And the journey began ….. tomorrow, the first step in getting help.

 

FEELING TODAY: Confident

MUSIC: Warriors by Imagine Dragons

GOAL: Finish the chapter in my latest book.