Ah heck, we're off and Running

 

I’m off and running or walking because they didn’t let me move too fast.

Ya know that freaking CT scan did a number on me. The upward position of my arm really hurt and caused it to swell, compression, elevation, nothing worked.

And boy did I complain to the doctor about that procedure. She said since my scan was clean the next one we can do without the drink. Yay.

Back to today, she was explaining everything to me after the exam and pointed to my arm and said, “We expect that to go down when they lymph node swelling does with this.”

It was unpromoted. I didn’t ask. I’ll take it.

Holy Cow in a field of flies …..Was this a long day.

A battle through rush hour to get to the hospital. I check in for bloodwork at 8:36, 9 minutes early. They take me back right on time. Now I know I have to wait for results before I see the doctor and start treatment.

I go back to the doctor 15 minutes early only to find out not all results were in. Okay,

It took another 90 for results because some machine was down.

Finally, back to treatment and they didn’t have comfy chairs so they put me in a bed! What no! My arm. They gave me pillows to prop but I know I have to move.

"Can't I have a chair." I asked.

"We're full, you can wait."

"No."

I got premeds and treatment.

The whole thing was so long because they gave the medication slowly and had 30 min observation intervals. Four hours.

They did serve lunch. Allie got me soup as well.

I was happy to get home. I am planning small meals over the next couple days, they say eat small amounts a lot during the day. That means not skipping breakfast. I am hoping for the best so that I am not flattened by side effects but realistic and strong enough to face them. This blog will help me keep track of when I feel things.

I got my alcohol pads ready to sniff to ease sudden nausea.

I need a video to show you guys the wonderful stuff I have received. Every thing was and is amazing and I started using them.

More tomorrow

Let the chemo begin but first ....

 This blog is a vent.

If you listen closely, you will hear the echoes of me screaming in complete frustration. Another medical test and yet another test no one warned me about.

I’m not talking people I know, I am talking medical professionals.

I had to get a CT scan of my abdomen which completes my body scan.

If you ever have to get a CT of your abdomen with contrast, be forewarned.

No one said anything.

It wasn’t in the details section of my chart.

No mention of ‘get there an hour before your appoint to prep for hell’

Nor did Lynette warn me.

Who is Lynette.

The miserable receptionist that said to me, “You’re having contrast, I’ll get your drinks.”

Wait. What?

“Lemon, Orange or tea flavored,” she asked.

She wasn’t talking coolers.

I chose tea and I’ll never drink McDonald’s Sweet tea or any other sweet tea again.

I knew when she slid open that window she wasn’t there to brighten my day. I knew when I handed her back the information sheet and asked, “I don’t know what this means.” And she replied, “Neither do I.”

Window slam.

I was in trouble.

After she puts the bracelet on me, she brings out two LARGE Styrofoam cups and tells me I have one hour to drink both.

They were huge. A total of forty ounces. When she handed it to me, you would have thought it would be nice for her to say, “Hey by the way in a couple hours, you’re going to have horrible gastrointestinal issues.”

Or.

Even if not Lynette, how about the chick that did my IV. I bitched to her about how bad the drink was.

She could have said something.

Back up. Why did I have to get an IV in my arm when I went through all that to get a port?

Or the CT scan ladies. Who also put that warm weird stuff in my IV.

I was miserable.

It was a miserable day. I have that inflamed and painful lymph node under my arm and holding my arms above my head for fifteen minutes was torturous. For both the lymph node and port side.

No one. No one said a word about the ‘After’.

About ten minutes from home, I started feeling queasy.

I ate a cracker.

Despite the fact I drank a ton of water to flush my system, it still hit me like a ton of bricks.

I thought something was wrong with me, that I was having a bad reaction, so, I did what anyone would do. I Googled and sure enough, thread after thread about it. It’s normal. Some folks were told to take the rest of the day off, some, like me, blindsided.

Finally by seven and after a long nap, I felt better.

It was a scan, a freaking scan. I will take the loud noise of the MRI any day over this.

Dude, why would they schedule something like this the day before Chemo?

When I go in tomorrow and have my doctor’s visit, I am going to tell them about this. And I’ll tell them to let people know it is not a pleasant experience.

I’m pissed because I have Chemo and know my feeling good days will be slim and they took the one day away from me when I was able to feel good and do things.

And didn’t tell me it would suck.

I’m getting ready for tomorrow. I got a large wonton soup for tomorrow and made sandwiches for nibbling and small meals.

It is going to be a long day for the first infusion. They have to monitor me before they send me home.

There was a bright spot to my day. A friend had sent two boxes of stuff for me. I loved it. And I’ll tell you all about it tomorrow. I am going to try to write on my phone while getting treatment. Not sure how that will go.

Thanks for letting me vent.

**UPDATE** just say my scan results. No new cancer in the abdomen or lower region. Another win!

Preparing for the Week

 

Since I don’t work a normal 9-5 job, any time I have to get up early crushes me. Not that I sleep late, but I like to set my own clock rules.

Sunday and Wednesday at church mean that I have to get up early.

Okay two days I can handle. But now, with all these tests, scans and so forth, getting up early because I have to travel into town has become the norm.

I hate it.

It not only adds an extra hour of travel it’s an extra hour earlier I need to get up.

Tomorrow, I have a full body scan at 9:00 am, last one for at least 6 weeks. Yay!

Am I scared? No.

Am I worried that more ‘spots’ will pop up.

Actually no. If they do, they do.

At this point it doesn’t matter because it already  hit my lymph nodes, and with this type of breast cancer, once it does that … boom like shrapnel it’s everywhere. It’s all the same cancer that the treatment will fight. It doesn’t matter here or there, it’s going after it.

Tuesday is my first treatment. 100%  full strength, Extra long. First go.

Am I worried? No.

Am I scared .. yes

What will I face? What is going to happen? Will I have debilitating symptoms like nausea and stuff or will they feel like a minor inconvenience?  I will not know until I undergo the treatment.

One thing I do know is what they told me I can and should not eat during chemo. Number one thing is sushi and raw fish.

Wait. What?

That is the bane of my existence.

So today, Sunday, my daughter took me to my favorite place to eat., a place she works (Thanks discount)

I loaded up on all the things I can’t have during chemo. Oysters, raw fish ….

It was an amazing lunch.

But there it was …

A fun time. A waiter that was clueless. Normalcy. Until it wasn’t. Here’s the video;

Until tomorrow when I really unload it all on you. And by the time I post tomorrow I should know about the scan.

Could I rock this Look?

 

I don’t expect many to read this today or tonight with it being fourth of July. But I thought I’d give an update.

Yesterday, I felt ok. Tad sore with movement. Today I went to get a Starbucks and made the fatal mistake of putting on a bra.

I took it off as soon as I got home. Tomorrow when I work at the church, I’ll shove extra gauze under the strap. I did discover when I changed the bandages that I have a huge bruise on my chest, I would take a picture but that would include my boob and I don’t want to get flagged for granny porn.

It’s about six inches long and four inches wide. I immediately hit doctor google and saw that it was normal to bruise and for it to even spread across the chest.

Other than that I think the stress of everything is making me tired. But I feel good.

I have a scan Monday morning and should be the last scan for 6-8 weeks. Then Tuesday, well we all know what Tuesday is.

As I said at some point, I was reading on the support group for this treatment that many women lose their hair shortly after the first treatment. So of course, I am on the wig journey and I have learned that you get what you pay for.

Two of my Shein wigs (Less than ten bucks each came in) and nothing like the pictures or the reviews! My Jocelyn wig (From, Schitt’s creek) Looks more like Debbie Does Dallas and my Merle (Devil wears Prada style wig) looks like Thelma from Mama’s Family.

The really good wigs are upwards of 400 dollars and some around a grand. My friend Jen said to reach out to the American Cancer society. So Tuesday when I see my oncologist I will get the required prescription for ‘Cranial Prosthesis’. I just want to be ready. I know Michele will come and buzz me but I will have spots. I want to wear different ones and have different personalities.

Another friend who has been there done that with BC, mailed me a box with wigs, caps and scarves, it should be here this week. I am excited. And I promise once I get them all together, I will post pictures of me in these wigs. Including Mama’s Family.

For now, I think I’ll watch some drag queens youtube videos on making a cheap wig look better. If I succeed. I’ll post pictures, if you don’t see pictures, then Mama’s Family Wig was helpless.

EDIT – Epic fail, even tips from the best drag queens can’t help. The only thing that makes this wig look better is a hat.

Vein of my Existence

We’ll call her Mary (Not her real name) She was something out of Mr. Rogers neighborhood. She was my nurse today. I had two. A pre-op/post-op nurse and an operating room nurse.

Mary was a great mixture of Miss Rachel and Mr. Rogers, probably more Miss Rachel.

You know what? I’m gonna call her Miss Rachel. And I mean that with utmost respect. She was kind, upbeat and perfect disposition.

Today went well, usually I write my blogs around midnight, but I am writing this now, because at 9:00 pm, the numbing agent is starting to finally wear off and I can feel the irritation and pull now. I had a good go. They said 4-6 hours, I got ten. Then again, I took a two hour nap.

I had a hard time sleeping last night, as you can guess.

I fell asleep around 330 and was up at 5:30. I wasn’t nervous or filled with anxiety, I think I just wanted to get it over.

I had to drive into the city and be there by nine. My sister came with me

When it was time, I was greeted by Miss Rachel, and not just a friendly hello, she smiled widely and hugged me. She took me and my sister back into another waiting and changing room, asked if I needed help undressing. I said no.

Then to an exam room. Where she did the vitals thing, put an IV line in my arm, then cheerfully explained the procedure. She told me that I would get a local and mild sedation, then said in the up voice. “You’ll be awake but not remember the procedure.”

“Does that mean I won’t be sleeping, I can be talking.”

“Yes, but no worries, you won’t remember what you said.”

UG. No. Immediately thoughts from my writer’s mind took off. Would I talk about Beginnings, Frank and Joe. Good God, I mean, I am always thinking about what I am writing. What if I spew out I am planning of destroying Steubenville, and wake up to FBI staring me down.

Um, no. I’ll pass on the sedation, thanks.

She then said if I want they can give me pain medication.

“Will it make me loopy?”

“Possibly.”

“I’ll pass.”

She seriously looked at me and said, “Don’t be a martyr.”

“Oh, I’m not, I just don’t trust what will come out of my mouth. After about 40 minutes in that room I went to the OR. It was like sci fi, the table moved, this machine above me circles me. They painted me with this blue stuff. The tech complimented that I was the easiest vein to find in his career. Cool.

I was awake during the procedure, not sedated. And I still talked the entire time. I could feel the pressure of the procedure, no pain. They told me to pick my port music. I of course picked my favorite country/Cristian singer. They never heard of him. My OR nurse loved his voice and looked him up. She commented, “Wow he’s attractive.”

“Yeah, he’s hot. I met him,” I told her. “But he’s surprisingly skinny, like borderline crackhead skinny. No offence to anyone in the room that may be a crackhead.”

At that point I felt the doctor pause and she laughed loudly.

Damn filter on me again.

Anyhow it finished, I had more problems with laying on that table for an hour. My back hurt for at least an hour.

Leaving the OR, I took off my blue hat and decided to make my hair look crazy for my sister (Reenactment picture),
but Miss Rachel saw me first, looked horrified and was like oh, you poor thing, Let me help you.

She grabbed my arm to escorted me back to the waiting area where she fed me crackers and Pepsi. She said, “Sit here, when you feel steady, get dressed, but not before you feel steady.”

“Ok.”

“When I walk out of here you’re gonna leave aren’t you?”

I just smiled and thanked her.

Now to relax. I’m gonna kick back on my reclining couch,  I was told that was probably for the best so I don’t roll in my sleep. Binge watch From Season 4 and if I fall asleep, so be it. AC is pumping, I’m set up all cozy with pillows and a blanket.

Growing a Pair

 

It was a good day. I had lunch with my aunt and it was nice to spend that time with her, my daughter came too. It took my mind off of things.

Lots of phone calls from the hospital today.

The Port nurse called with questions and instructions. She seemed rather flighty to me.

My oncologist called to discuss next week’s treatments and said, “How about how great those Echo results were.”

My nurse oncologist navigator called to prep me with information for treatment. Apparently, I am going to be there this first time for HOURS.

And then I got the courage to call Steve. He had reached out to me but I just couldn’t talk to him. It was hard. It was Steve. Those of you who know me know how hard that was. He was also co-writer of my new theme song and said he would happily help record it.

I thought a lot about Ron Brown today, my kids’ father. How close we were and of course, how competitive we were. How he was such a huge creative influence in my life.

Today was the day for saying things out of the blue, I told my daughter, “I am going to live longer than your father.”

To which she replied, “Why are you still competing with Dad?”

“Because he’d want it that way. We always competed.  In everything.”

He was fifteen years older than me. That’s my goal at least!

Anyhow, I went to my son’s show tonight. I didn’t do stand up, I was in the mood to just watch. It was wonderful. Strangers, no social anxiety. A friend I’ve known for decades was there he had no idea what was going on with me and it was so awesome to get a hug that wasn’t sympathetic if that makes sense. Glad to see you sort of thing.

I realized tonight that my social anxiety has to do with facing people with my disease.

Family functions, church.

Speaking of church.

I think cancer removed my filter.

Not that I had much of a filter as it was, but now it’s gone. Almost as if I can’t control what comes out of my mouth. We were at church staff meeting and when asked my thoughts on the new, young Associate pastors’ sermon, it just rolled from my mouth in honesty. She looked at me with daggers and shock. I was being honest. I apologized for being blunt. But it was already said.

Before I could stop myself … I just started ranting.

I don’t like that side of me. Maybe subconsciously I am thinking life’s too short to not be honest.

I’m tired. I hope I can get some rest. 6 am comes early. I did write tonight as well.

Tomorrow … port of de insertion. Am I nervous? Heck yeah. I’ll fill you in.

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 …