Struggles and Weirdness

 I’m excited I wrote tonight in my newest book.

It’s hard to explain but sometimes I can’t concentrate too much for too long, I am constantly filled with thoughts and worries. You know it’s bad when I don’t spend an hour  a day on food porn. Yeah, that’s a real thing. I love looking at food.

Perhaps now that this latest test is under the belt it will relieve some pressure and stop the worrying.

What will the test show? What is next?

Am I strong. Yes, I am. I have a very matter of fact out look on this whole thing.

This is what it is. This is what I need to do. I am not scared, because I know I am stronger than this disease and so is my God.

Still there’s this new level of anxiety. Like, I was always an extravert. Now I don’t really want to go around too many people.

Birthday parties and family events are hard, especially when confronting people for the first time after diagnosis.

They are all kind and gentle, but they look at me with such pity.

Don’t pity me. I’m not dying, I’m fighting, I’m living.

My fight has just begun. I know this. And all of you will go on this fight with me. Watch me kick some ass. Be my cheerleaders.

I have four awesome kids who lost their dad and twelve amazing grandkids, Tons of friends and my readers … oh my God, I can’t tell you how much you inspire me.  I’m not going anywhere I have graduations to see, weddings to attend and books to write.

However, I can’t get over this social anxiety. This is new to me. When I am home, I’m fine. One on one … good. But bring a ton of people, I just want to run.

I feel like everyone is staring at me. And I haven’t even started looking like the chemo girl.

Tomorrow (Wednesday) I am going to go to my son’s open Mic show. See how I do in a sea of strangers. Who knows, I may even do a stand up set. If I do, I’ll video it so you can see.

Oh, shoot I had my EKG and Echo today. I hardly slept and was up at 6 am, four hours before the test.

I needed to pass this. I need to be strong enough for the Enhertu. And I got the results.

Everything about my heart is normal.

Such great freaking news. I said to my son before the results, ‘Every time I get a test or a scan, something bad pops up’

He said, “You need a W.”

A win.

Yay, the echo was a win.

Wednesday is staff at the church and my son’s show. Let’s see how that goes.

Thursday is my port placement and you will see a video of that. Not the placement but me going in. Unless they let me film, then in that case I will.

Until next time …

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.

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.

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.