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.

Talk the Talk

 

I went out today with my friend, Terri. She had things on her mind for me and we visited thrift stores. She knows how much I love the pool but at this point just am not allowed out there without protection, so we went shopping for some things, then went to lunch.

It was a good day.

I listened to her bitch about things and, honestly I loved it.

I also realized today I need to stop the car cancer talk. Not for me but for my daughter. Yes, I know I hid my health from them, carrying it myself but once the truth was out, it was all I talked about. When I picked my daughter up to take her to work today, I said, “I have been dealing with drama. This morning.” When I told her it was filmmaker drama, I saw the twinkle in her eye. Almost as if she was glad to not have to hear cancer talk.

I know in my heart my daughter doesn’t care what I talk about. But for me I need to find something to take the pressure off my kids.

Speaking of pressure and Terri.

Her ex has been dealing with a cancer journey of his own. He reached out to me and really wants to be there.

I told him I was going to have an appointment with one of the oncologists in the practice to get my medical marijuana card.

Now let’s establish, even though I hung out with that crowd, I wasn’t a drug person. It never interested me. But hey why not now? Right?

Terri shows up to pick me up and as I am coming down my apartment steps she is walking up.

Whispering as if the world can hear us, she hands me this small thing and says, “Hide this in your apartment. Go now.”

It was a ‘marijuana pen’ from her ex. A gift until I get what I need. How sweet was that? What made it funny was Terri was scared having it. As if the cops would zone in on her.

I told my son about it, he was like “Be careful. I have one.”

What the heck does that mean?

It was a good day.

Over the last 24 hours a lot of friends came out of the woodwork and were there to help.

I hope they all know I appreciate it. I told them, but I hope they know I meant it.

I have one week. One week free of doctor’s appointments, test, nurses and so forth. One week before everything comes down on me. More tests. The port, and finally treatment.

From the movie, ‘Greatest showman’ and song.

I am brave, I am bruised

I am who I'm meant to be, this is me.

Until tomorrow.

 

FEELING TODAY: Strong

MUSIC: This is me

GOAL: Enjoy the week!.

Logan or Soylent?

 How did I get it so wrong?

Okay so I think I am officially traumatized over my MRI experience, but I will get to that in a minute.

Before … I am overwhelmed with the outpour of love, concern and prayers for me. I mean it. The kindest words have been given to me and more than you realize, I take them to heart. I feel them, they move me, inspire me. I have a list.

Everyone that said, ‘I am here, let me know what I can do’. I will take you up on that. Even if it is to invite you over to have tea and talk.

I saw a classmate in the grocery store, I have known her since fifth grade, the concern in her eyes was real and the embrace she gave me was loving.

I will call her.

Look, I hate to bother anyone but my children and siblings, but they are going to get tired. My daughter Allie keeps driving me everywhere. Dealing with the truths of this horrible disease. I am in it for the long haul, and she and others will need a break.

So be forewarned, if you offered, I will take you up on it. I have that list.

Back to that damn MRI.

I am pretty tough, but like I said previously, I had no idea what I was getting into.

No music? Why?

They told me because I didn’t ask.

I said, “Dude, this is my first MRI, how the hell was I to know it wasn’t automatic.”

I remember putting that mask on, then backing up into the coffin, watching the ceiling art disappear.

Ah, the ceiling art. It was made to look like I was outdoors. Why do they do that when it disappears from sight the second you get sucked into the machine.

What was the purpose of the lovely calming scenario if you can’t see it once in the machine.

At first I made the VITAL error of calling it a scene from Logan’s Run.

But how, me, the apocalypse queen could make that mistake. It wasn’t Logan’s Run it was Soylent Green with my hero Charlton Heston.

The part where elderly watching beautiful visions of the end as they are put to eternal rest.

That’s what I felt when they rolled me in the machine and when I came out.

I got a lot of advice about the next MRI and I am gonna take it.

Getting drunk before hand is probably out of the question.

Maybe I’ll try the weed.

Oh, I have an appointment with a doctor via video to get a medical marijuana card. It’s important to note, I never was a stoner. Drugs were never a thing for me. But hey at this point in my journey, why not?

I think the funniest part of this week was when I went to the oncologist and the social worker came in to discuss finances and ability to pay. She was so impressed that I found, filled out and brought the special Pennsylvania Breast Cancer insurance forms. But she looked at my daughter and told her to ‘Google’ things, because people our age, she said aren’t good with technology. She was cute, I let her go on about elderly and tech, and didn’t tell her people come to me for answers.

Wow. Longer blog than I expected.

Today was a good day. No doctors, no tests, just a normal day. Every day is a day with worrying. What will come next. Today was not that day.

What a gift.

I thank God for the strength and peace.

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.

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

Mathy and the Hospital Stay

 Yeah, I kinda knew what was happening, I’d be stupid not to. Before I lighten things up, let’s get the heavy stuff over and done with.

Telling my kids was hard, but I raised some tough kids. I told them before I went to the doctor and told them every step and hour, I was there. My daughters were with me. My sons wanted to be, but I wanted it to be a girl thing.  What was harder? Making phone calls after I got out of the hospital. Calling one of my best friends of over 50 years, hearing her silence. Calling my friend who just kicked cancer’s ass and hearing him. My friend John I just felt how broken he was feeling. My baby brother, my siblings. That was hard because I knew what I was telling them would hurt and I hate hurting people.

Okay, heavy stuff done.

So, okay, women’s hospital. Someone needs to tell me why all the women that work at the Women’s hospital are so nice  and the men seem so … I don’t know distant. Their bedside manner, while good was not as warm and fuzzy as the women I encountered.

At the ER they put me through a battery of testing and scans. Oh by the way I was in Hypertension crisis, but that stopped almost immediately. That was nervousness.

I had prepared, I knew I was getting admitted and I packed a bag. My girls went to the car to get it while I was waiting to be brought to the room and then they went up. I got a text from my daughter.

‘Oh Mommy, they gave you a suite!’

Seriously? I have piss poor insurance, how did I get a suite. Maybe someone was a fan … nah.

Room was huge when I got there (See pic).

It wasn’t a suite. It was a bariatric room. A room designed for very large people. I weighed in at 121 at the hospital.

I felt like Goldie Locks. The bed was huge and the chairs wide. The toilet? We won’t talk about how big that was. I nearly fell through. What the hell. Maybe I didn’t weight 121.

Again, Goldie Locks. The bed wasn’t an option. It was too big and squishy so I opted for the chair and I put pillows in it.

Whenever the doctor came in, he was like, “Where’s the patient?” I had to raise my hand for him to see me in the chair.

We had great conversations. We talked about me being a writer. He, like many people had this look of ‘everyone’s a writer’ sort of thing.

I had a heart monitor, oxy pulse, BP cuff, I couldn’t move and finally I was like, “Look, Dude, can you take this off, I’m fine.”

He was cute. Could have been my son so I will refrain from calling him hot.

He looked at the readings and said, “Yeah, I’m confident you’re not gonna go into heart failure in the middle of the night. Let’s take all that off.”

Freedom.

They were never able to find me after that.

My tablet wouldn’t connect, I was stuck either watching TV or wandering, so I wandered.

I met the woman across the hall in the other bariatric room. I’ll call her Mathy but that’s not her name, it sounds like it.

She barely fit in that bed and I felt sorry for her. I asked her if there was anything she needed. She said she saw my daughters bringing me pizza and asked if I had any left. Of course, so I gave it to her.

Later that night the nurse said, “Please don’t feed Mathy’.

I asked if that was the same as ‘Please don’t feed the bears.’

She replied, “Yes, she is not very nice.’

We’re not giving her treats because she’s not nice or health reasons?

It wasn’t health reasons. My attitude was like if maybe we’re nice to her she’ll be nice to others. I don’t know why she was in that room, I never asked, but it was the breast cancer floor.

I met others while there, and I realized no one had my attitude. I wanted to help, to maybe let my attitude be contagious. Smile at them. But attitudes aren’t contagious, they can only come from within.

My oncologist searched fifteen minutes for me only to find that I was at the duck pond. I apologized and she said, “Don’t. It makes me happy that I had to look for you.”

That is where I am at.

After my biopsies, attractive doc was in my room. He said, “I’d like to keep you another day or two and do another scan.”

I asked, “Is that going to help me?”

“No, it helps me.”

“Sorry I don’t care about that. I care about my mental well being. I’ll do outpatient.”

And then he said, “Fine, I’ll send you home.”

But before he released me he told me that he and a collogue were looking at my webpage and were thoroughly impressed and talking about which books of mine they wanted to read.

Wanna know why that’s cool? If they read my work, they’ll know me better. A part of me feels if thery know me, they'll work harder.

Until tomorrow …

 

FEELING TODAY: Strong and Witty, needing Frank.

MUSIC: God can use a Broken Man by Jason Crabb

GOAL: Clean out my freezer for the meal prep my sister and brother did. (DONE)

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.