Hell Day

 

Horrible day.

And I am pretty sure I was the worst patient ever. My mood is usually pretty good. But today I reached my end. Clearly, none of these scheduling people have an understanding of what someone feels like going through chemo and which days are not good.

This was the day from hell.

The only appointment I was supposed to have was my PT appointment with a lymphedema specialist for my arm. Then they added an MRI. The good MRI.

Follow up with radiologist oncologist.

Then they added another appointment … a neurologist.

The whole reason for it was because the original MRI showed a fluid filled benign thing (The name escapes me now) and a small spot they were unsure of. Tiny.

It appears the small spot is a met. A speck of cancer. Very small. It is the same size as it was on the previous MRI, so it didn’t get bigger. That’s a good thing.

The radiologist oncologist said usually they grow and more would appear and in his words, “The treatment is doing its job. But ….”

They want to do something called Stereotactic radiosurgery. A one and done procedure where a tiny beam pin points the spot. They will  not be touching the benign spot.

He is confident that it will be gone after the procedure.

Good God.

That’s the medical update. Here is my day.

After getting up ungodly early, I had my daughter drop me off at the MRI figuring it was going to be a long day and my son would pick me up.

Directions say enter the building, take the elevator. What the directions didn’t say was it was a long walk through the hospital on the opposite side of the building.

The MRI wasn’t as bad as the first one. They blocked a lot of the noise and it took only ten minutes.

After, I asked the MRI people where the doctor’s office was. They asked, “Are you okay to walk?”

Sure. They failed to see it was in another part of the campus, through winding hallways across a walking bridge. It took me fifteen minutes to walk there.

I put on nearly 2000 steps.

At that appointment I let them have it. I was like ‘Do you realize how far of a walk it is for someone having chemo symptoms of fatigue and nausea?”

I was not a happy camper.

After the radiologist I saw the neurologist, then I had to get a CT scan to map where they’d do the treatment and they made this mask for my face.

For one treatment.

They placed this wet mesh thing over my face until it hardened. I get to keep it when I am done. I think I’ll do a zombie mask.

After, they came out with an appointment card that read, ‘6:15 am’, I told them take that card and find another time.

Seriously, do they think no one has a life? Just give them any appointment.

Finally, 4 hours later, I am leaving to go to my PT.

I was exhausted, dehydrated and still had an hour drive. Thankfully the PT was near home. But there was some mix up and my appointment was delayed almost an hour.

I’m still miserable and haven’t been able to eat.

I did take a long nap. Hoping at some point this evening, I’ll feel better.

Sorry for venting.

Day Six Strikes Again

I know I have been absent this weekend. Just didn’t want to bore you with mundane stuff.

Did the transfusion work? Hard to say. I was still sick last night, Day Six in the evening, same as last cycle. Not as sick as I was last time. And I did pretty good today, again, until this evening. Now I am tired, not hungry but am gonna try to force myself to eat something. I did have broth today and some egg custard (Thanks to Nancy from church).

I am charging my medical marijuana pen. I don’t utilize it enough, but I think I’ll try it tonight to build an appetite.

Maybe some toast with apple butter.

Honestly, more than nausea it’s just tiredness. I don’t want to do anything.

Last night, I sat with my phone and wrote so that was something.

I have three appointment all on Wednesday. MRI, radiologist, then PT. The first two are across the river on the far side of town, the PT is close to home.

I just hate having to go into town. It’s a long drive during rush hour and I have to find someone to take me because I’m not supposed to drive too far on my medication. Which means I have to inconvenience someone to drive me.

Trying to do that now, have maybe my son drop me off and my daughter come and get me.

Really, I wish I didn’t have to do this.

It means getting up at six in the morning when I am already so tired. I just keep telling myself it’s only a few days out of three weeks and I have to endure this because it’s working.

I did however look at my chemo schedule and saw 48 Hour Film Fest is the weekend before a treatment. Meaning that should be a ‘feel good’ weekend, so I signed up. Those of you who know me, know I do it every year, so I am gonna do this.

Those of you who don’t know what that is. It’s where you go on a Friday, get your genre, required elements and make a short film, turning it in within 48 hours.

Should be fun.

Fun.

Fun for me would be eating a giant dish of pasta without worry of getting sick.

Okay I’m complaining. Just know it’s more so about these appointments this week.

Most of the time, in the day I feel good. I haven’ missed work at the church.

I am grateful that God has me. And just so you know, every time someone tells me they’re praying for me, it means a lot.

So I am going to end this boring update.

Just wanted to keep you all in the loop!

Hydration Infusion

 

I am so glad I kept track of everything that first cycle. It’s a spreadsheet. I look at each day last cycle to see how I felt, what to avoid eating.

It’s been a challenge to change my eating habits. But I am trying. Small meals frequently. I’ve been snacking a lot, healthy snacks. But the dreaded ‘sick’ days are coming.

I did get some new stuff from the Medical Marijuana store, a tincture.

So far, I feel I am one step ahead of this game. Last time I recall even blogging that I was exhausted on this day (Day four).

Maybe it was the hydration infusion I had today. I don’t know. I am not exhausted, but I’ll take it one day at a time.

I went to a local infusion center instead of going all the way into town. It was weird. Not as comfy as the Woman’s Hospital, and the chairs didn’t recline. How do you have an infusion center without reclining chairs.

No one was permitted back there with me either.

Oh, well, not sure I will do that again unless it makes that big of a difference in my chart of symptoms.

Not much happening …. Have to go get the ‘good’ MRI next week, which still irritates me that I have to do this again.

As I said before, if I had regular insurance it would not be approved.

Short blog tonight, just wanted to update you and let you know I am still here fighting and grateful for all of you!

Bam Bam and the Amazon Truck

 

Funny thing happened … and I’ll get to it in a minute.

Had a good day. Although last night I couldn’t sleep. I am pretty sure it was the steroids they pumped into me. But I was fine with it. It was actually nice not to be tired.

My son and Daughter in law covered for me at the church and VBS.

Special shout out to Margaret L for the wonderful gift box she sent me. It was amazing.

Okay onward., So, like my book, Heaven Shall Fall has been out for a while, and I included it in my recent compilation and forgot there was a note at the end saying that there was an original version that I completely changed, and if anyone wanted a copy reach out. No one ever has.

Not gonna lie, since I haven’t had any self published new releases money has been tight. Especially since my savings took a hit before I got that cool new medical coverage. I was never rich to begin with but this …eh, I’ll get through it. I have bigger things to worry about.

I want to rely on my gifts to make a living. I hope during this all I don’t become irrelevant and no one wants to read me anymore.

Trying to think of ways to utilize my backlog, asking God to show me a way. I get two, not one, two emails yesterday asking for the original version of Heaven Shall Fall.

I go into my archives of files pre 2003. And there it is.

Then it hit me. What if I put together a compilation of my pre 2000 works that I totally rewrote.

Just until this new release comes out next month. It may or may not work, but people may be interested.

While looking through those files, I found books I never published, and my very first manuscript written when I was 14. ‘They will Destroy Us.’ I had scanned it back in 2007. It’s horrendous, and typed up on different types of paper thrown in a notebook.

2007 was the scan date, heck that was before anyone on Kindle was even writing apocalypse fiction.

So I am gonna see what I can do. Just need to figure out if I put it on Amazon or another site for people to get. Maybe the older books will inspire people to look into my backlog. Or be curious and say, ‘Hey I liked this book, what was different?’

Um, swearing and sex in the older versions. Boy did I clean up.

I spent this afternoon starting it. And am resolved to finish my humorous autobiography about  what shaped my writing. I will not include the cancer in there. The book is already half finished. I always occasionally write a chapter. But I think I’ll finish it.

I will get back on track. Just life, you know, throws a curveball and you got to figure out how to hit it out of the park eventually.

Update on my head, I am still losing hair, I expect to be a shiny bald head here soon. I am thinking of going to get temporary tattoos, I’m thinking Bam Bam Bigalow style.

Anyhow last, the funny thing that happened today.

I went to get my daughter today for a coffee run and pick up the Walmart order. I always pull straight into her driveway, then back up, swinging to my left into the parking pad then turn to pull straight out.

It’s an everyday thing. Today different. She gets in. I reverse, BAM. Good thing I was driving slow.

I stopped on impact. I said out loud, “What did I hit?” Thinking my son in law left something in the driveway. I look in the mirror, all I see is blue.  it’s an amazon truck.

Apparently he stealthy pulled in the parking pad and I never saw him.

In my defense neither did my daughter.

The driver was in the doorway, thankfully I didn’t hit him. No damage to either vehicle.

I got out of the car and told him, “Sorry, Chemo brain.”

He laughed and said no worries I am not filing a report over this.

We all had a good laugh.

At Starbucks a UPS truck was behind me as I was backing up, I did not hit him.

Second Round - 6 more until Avengers

 

Short blog. Just wanted to update you.

Day one, infusion number two. It went smoother and I wasn’t there nearly as long. It went from 90 minutes for Enhertu to 30 minutes. I still had 30 minutes premeds and another 30 of another chemo therapy before Enhertu. I wasn’t as exhausting as the first time when I was there for 6 hours.

I feel good, not tired today. Although I did take a 90 minute nap.

For some reason I had this nervous excitement. It was so prevalent my oncologist even stated I wasn’t my normal calm self. I told her about it.

She told me from my notes and what I told her, that I am doing well.

Although both her and my physician assistant commented on how my ‘wound’ was looking so much better and the swelling under my arm (Lymph nodes) had reduced.

All encouraging.

Bring on the next hit, let’s take this baby down a few more notches.

My chemo nurse said I have a good head for the bald look and told me from what she has seen, this treatment of Chemo is different with hair loss. It’s like the shock of it causes the loss but it grows back fast. She told me not to be surprised.

I hope the diary I kept helps me get through this round easier, plus I have hydration scheduled for Friday.

According to my diary, today through Friday afternoon food tastes normal and nothing bothered me. I am planning accordingly for the rest of the week.

So we’ll see.

I did however finish (Thank goodness) Sweet Magnolias. Season four was torture, like paying a punishment I didn’t deserve. Season five was better. I still skipped over the mushy stuff.

For some reason it went into The Resident. Now that is a good show.

Off to write a little then relax.

Thanks for reading!

Pick my Look

 On the eve of my second infusion, I am nervous. I am hoping it goes well. In fact I am kind of hoping it goes better and I am stronger and ready for it. Last time I was already weakened from the CT scan with oral contrast that played havoc on my system.

This time my oldest son is taking me to Chemo, he’s a character, it should be interesting.

Can I just throw this out there?

I really appreciate you following this blog. I love reading the comments, they are so encouraging.

Yesterday was a strange day. Half my hair fell out before church and I made the conscious decision to remove the rest. I sported, even if it was only for several hours, the look I didn’t want to spot.

That ‘desperate trying to keep my hair as my scalp shows through’

This afternoon my halo wigs came. Fringe wiglets that you wear under hats or scarves.

So tonight, I played around with different looks.

I went to the store tonight with my ball cap wig (The one from earlier) it drove me nuts. It was itchy, heavy and hot. I whipped it off the second I got back in the car.

My oldest grandson said to me, “Nen, you need to just go with it. This is who you are now, just take off the wig and hat and just don’t worry.’

Man, I love that boy.

But I played around tonight. Thought I’d ask your opinion on which look I should rock when.

I have already decided that for work at the church, I’m just gonna rock the bald. I love my church family. No one there is gonna judge or stare.

When I go to doctors or chemo … bald look.

But what about functions?

When I am filming a short?

Lunch with friends.

Rock the bald or something else. Right now I don’t know what works for me. I know I am not fond of looking like the cancer patient with a scarf thing. But I thought I’d get your opinion.

My daughter tells me that whatever I choose I need to feel comfortable with it.

Ok, let’s face it I am not the most feminine person, so I did buy some lipstick.

Here are the looks.

What do you think?

If you were going out to hang out with me, which look would you feel suits me best. I know, I look old in these pics, ignore that. Weight loss is causing loose skin. Here they are.

 

Bald is beautiful

 

Baseball cap with halo bub

 

Scarf look

 

Cap with halo pixie wig

 

Wig

 

Bret Michaels Rock star look.

Down the Drain

As I have been saying for days, going … going …

So I really wanted to hold on to my hair for the memorial jam for Ron. I got up and sang (I’ll include the link at the bottom if you want to take a peak)

Every day I woke up a bit more of my scalp was shining through.

Hold on. Hold on. Just until Sunday. I really don’t know why it was important. I have been suffering social anxiety since my diagnosis. I did not have that today. It was more self consciousness about my appearance.

I was doing good and then I showered this morning before I went to work at the church. Washing my hair, my hands were covered with hair. When I got out of the shower, it was all over the tub.

It was a shock when I looked in the mirror and not really a good look. I added some gel but it wasn’t working. I became that look I didn’t want … a nuclear war survivor or someone from the cast of The Day After.

I messaged Michelle my hairdresser and told her it was time. It had to go.

My look at church didn’t matter much, but for the memorial jam it did. I grabbed a ball cap a friend sent that said, ‘Chemo Hair, I don’t care’ and went to the jam.

To my surprise Michelle showed up with Joe, I was happy to see them. And she brought clippers and a cape.

I took off my cap for the song, let the hairs fly, sang and after we shaved it off.

While some people wouldn’t call it my shining grandmother moment, I shaved it in front of 6 of my grandkids. I figured let them see it go instead of being shocked when they see it off.

This is a screen shot of my youngest while it was getting done!

So that is my update! Getting ready for round two.

If you want to see the shaved head video it’s on my FB page, and here’s where you can catch a glimpse of my singing Stevie Nicks with my sons and old bandmates. CLICK HERE