A Ray of Light

 I got some good news. It put me in an immediately good mood. As many of you know I am severely under insured, I was paying $100-$150 every appointment as a co pay.

Wait.

Good Lord, if I am paying that much, how much is the doctor charging.

Anyhow, many people do not know this, fortunately I have a friend who work for the state and told about BCCPT.

According to google - The Breast and Cervical Cancer Treatment Program (BCCTP) is a Medicaid initiative available in all 50 states and Washington D.C. It provides free or low-cost full-scope Medicaid coverage for uninsured or underinsured individuals under age 65 who have been diagnosed with breast or cervical cancer.

It pays for everything. I mean everything, even reconstructive surgery.

I applied. Yesterday phone calls were coming that my insurance wasn’t paying for my port and I would be responsible for the $4000 procedure. My treatments would cover only 40% of the 9,000 per pop chemo. I felt as if I was financially drowning, And then …

An email from the social worker today. I was approved for the BCCPT. I will have full coverage, everything starting July 1^st.

I can not begin to express how happy that made me. I was worried, you know, four appointments in the next week, how was I going to do that co-payment. But apparently, I have to only do the co pay for one, on the 30^th.

It was approved that fast. I uploaded the revised paperwork on Wednesday the social worker submitted Thursday and was excited to tell me I was approved Friday morning. I don’t believe she knows how much this made my day.

So treatment begins July 7^th. A new treatment, once every three weeks. I joined a support group for this new treatment. Most women lose their hair within a week of the first infusion. I'm ready to rock the hairless look.

I plan on getting a buzz cut when it starts to fall out. BUT those of you who watched Schitt’s Creek, I am going to be Moira. I am going to have wigs and name them. Here's a link to her wigs. This is where I come to you. Help me pick out wigs. If I choose a wig you suggest, it will be named after you.

The picture is of me wearing my first Amazon Prime Day wig. I’m calling it Jen.

Let’s all have a great weekend.

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.