Wigging Out

 It started with a Google search. Actually, it started with a text from a friend telling me about the wig salon. Then I googled because I swore they were appointment only.

I reached out to ask what the price range was because I didn’t want to waste their time. They were affordable, within range enough where I would have to break out a credit card, but then the owner sent me to Hair Peace Charities and with only a few questions, they sent the shop money for a wig. All I had to do was pick one out.

My daughter and I went there. They had a lot of wigs, I tried a bunch on, but the one I got just screamed at me.

“Hey, this is the same wig that the woman at chemo has!”

Same wig, different color. I admire that wig every time I see her, the woman was always made up and looking fabulous.

I always told my other daughter I couldn’t afford that wig. I knew it was a wig not because it looked wiggy but because, hey we’re in chemo. Just a guess.

There it was. On my head.

It looked so natural on the forehead but it was too long for me. My daughter whipped out a picture of me with longer bobbed hair and the shop owner fixed it.

If you didn’t see it on my Facebook post, here it is.

My son called to tell me he thought I posted a picture from 2003.

Now in the picture it looks really good. In person I think it has a hint of wiggy, but enough for people to know. To care?

I don’t plan on wearing it all the time. Only if I go out somewhere or an event. I want it to last. But it really isn’t a matter of just putting it on. It needs adjusted and played with.

First I have to get used to it. I read a bunch of tips that I need to start at home, learn how to make it look good then gradually go out.

I won’t wear it to chemo, no need there.

It really is a vanity thing, one I never thought would happen to me.

I know I am gonna feel like people are staring, just like I feel like they stare now when I go out with one of my caps. It took me a while to get used to wearing caps, so I’ll get used to this.

The owner of the shop even gave me a headband to wear under my ball cap wig so it doesn’t itch for the days I want to just throw and go.

I think the wig looks good, enough where I look like my old self and not the poster child for sickness.

But even with my baldness, patches of buzzed fuzz hair poking up here and there, all of this is part of my combat uniform and I am in a battle.

A Man Named Gene

 Not sure how long this post will be. But I wanted to share how my weekend has been going. Last you heard, I was pretty miserable. Physically. Yesterday (Saturday) I started feeling better from the mild flu like symptoms and decided, you know what? Sunday is Day 6, the start to my sick days, so I am making the best of the day. Pastor Matt gave me Sunday off, Saturday I went to the church and prepped the sound booth for my substitute. Then knowing Aiden, my oldest grandson needed a haircut for school and I need a protein packed Starbucks. I picked him up.

Look I am going to be honest, since being bald and wearing a cap, I don’t like going in any place where people know me Including Starbucks. I’ll go to another one, not my regular. I figured Aiden was with me, I’ll just send him in to pick it up.

I sent him a text and this was his response. How sweet is he.

Off we went, forgetting … that not only do I suffer from bald headed social anxiety now but my grandson suffers from severe social awkwardness.

What a pair. We pull into Starbucks and he says he would go in with me. UG. I took a deep breath and told him ‘I got this’, ran in and got my drink from the counter.

I got in the car. Proud of myself for braving the store. Took a sip, it didn’t taste right.

Damn Chemo taste.

“Who’s Gene?” he asked.

That’s when I realized I grabbed the wrong drink. Which wouldn’t have been a big deal but Aiden thought it was the most hysterical thing that poor Gene is probably in Starbucks looking for his drink and was pissed at me. I wasn’t going back in so I went through the drive thru. He went on and on about this guy Gene and how I took his drink.

Okay it was funny and you had to be there.

It was a good day. Today, day 6, I am being proactive. I took my anti nausea meds this morning and then a full dose eight hours later. So far, so good. I guess it helps now that I am taking the right amount. I found out I should have been taking 8mg not 4. I am hoping it makes a difference.

Fingers crossed that CT scan comes back good tomorrow.

A lesser Day

 It’s been a few days, I know.

I had that CT which I have no idea how that went because results aren’t in. They’re looking for inflammation of the lungs because this treatment can cause it. I'm thinking positively because if I had that condition, they would have been spotted. Who know.

But surprising me was the bone treatment that they added to my chemo. I thought I’d skate through those ‘flu like symptoms’, but last night I started to feel it and then today, I felt like I got hit by a truck. Delayed symptoms, but it only lasted half a day. Nothing compared to nausea.

I wanted to go to the pool today and even tried, but I don’t know if it was anxiety or me just immediately feeling bad there, but it didn’t work out. I stayed like twenty minutes.

Today was not a good mental day and I rarely have bad ones. I'll allow myself this one. Just getting inside my own head as a writer. I am writing but the truth is, I am not publishing, which means I am not making money. I make some, not a lot. The new releases keep me relevant and keep me above water.

But the truth is, even if I were publishing like I was, I wouldn’t have this special insurance; there are income guidelines for it. Even though they are higher than state guidelines, it’s not much higher and it’s still low by standards.

Problem is when I had regular insurance, I was paying so much out of pocket that any extra income was going to those bills.

I’ll figure it out. I know I need this special insurance and I am grateful for it.

Just a sad state we live in that when you’re sick, you’re poor either way. Either from not having income so you can qualify for special insurance or paying out of pocket.

A catch 22.

I’m probably in this mental state because it’s supposed to be a green day. I color code my symptoms/days spread sheet and this day, both cycles were green (Good) but today was a yellow day. At least it's not a red day.

Tomorrow will be a better day and our new pastor told me to take Sunday off this week to rest. I spent tonight focusing on my church work and updating the website. Which actually helped.

Focus on something else other than feeling bad.

48 Hour Film Project can’t come fast enough. It’s in a few weeks.

I’m guessing the ups and downs are normal, I just usually don’t have mental down days. I’ll turn it around. I’m almost finished with this new book and then I am off to Beginnings where I will be in my happy place!

Updates and News

 

This is sort of long, but a catch up and I hope worth reading for you.

I don’t know what caused the mindset change,  I have been a pretty positive person about this disease and outcome. Maybe not the symptoms or the out of control testing and locations …. But today, I went in differently.

It all started with Elvis socks my grandson got me to wear to chemo. On Sunday I decided if I were wearing the socks then I would show, then I just added to the outfit. You know what? I’m not normal, let’s do this up bright and out there. I thought. I called my son, Noah for eccentric help.

The outfit changed my whole attitude. People looked at me wondering if I just didn’t have a fashion sense or maybe not all there.

I didn’t want to be like the other women in the waiting room. Sad and quiet, looking lost or looking for a fight. Which apparently a fight broke out over Price is Right while I was getting examined.

Positive and bright like my outfit. Not to mention my naked Sam and Dean Supernatural Pillow.

Although taking a view inhales of my Medical Marijuana probably didn’t hurt my positive attitude. The nurses and aides all commented on my outfit with a smile, saying, ‘look at you.  All fancy today.’

My friend Mike is going through Chemo and he posted a pic of him watching TV from the chemo cubical. I was bound and determined to find it. I did. Food Network was my choice.

My daughter Allie was with me, I know she thought I was extra. Telling me to talk quieter about the chefs on Food Network and she asked me , “Mom were you singing Elvis with a nurse’s aide in the back?”

“I was.”

“Okay, that’s what I thought. When the fight broke out the nurse said she was going back to the happy patient and singing Elvis again. I wondered if that was you.”

Who else. I made people smile and laugh today. That made me happy.

The positive grew. While my weight was down, so was my blood pressure … it was normal.

I saw my oncologist, sweet little thing that looks at me as if she just is trying to understand me. She was truly worried and wanted to help with the symptoms.

She knew I was concerned about adding that bone medicine and confident I could handle it. I told her ‘Fine, I got that brain surgery you guilted me into.’

Then she got the brightest smile, grabbed my hand and said, “And I am so, so happy you did that. It was the right thing to do. Now … for your severe symptoms….are you still drinking?”

“No. Yes. But micro sips and not like I was. I’m no longer a Hemingway functioning alcoholic.”

That made her pause. She said she wants to put me on a pill to take at night, three days before the bad week and all the way through. I was like, ‘wait, isn’t this a med that they prescribe as an antipsychotic?’

“Yes,” she replied. “But it’s a very low dose. A quarter of what is usually prescribed.”

“I’m a writer, I’m afraid it will mess with my brain.”

“I highly doubt it will quell any thoughts that go on in your brain.’

Meaning?….. Fine. Give the subscription.

Then she told me. She doesn’t want to lessen the dose because of symptoms. Not yet.

Why? Sharing time for all of you following.

My tumor markers went down between the first and second treatment.

Upon physical examination, my underarm lymph nodes are much smaller, the swelling in my arm has decreased drastically, and the tumor in my breast is significantly smaller.

“The cancer,” she said. “Is dying off and retreating causing the shrinkage and healing. We are on the right path, a steady trajectory to what we want to see.”

Well, hell, side effects be damned, if this is working, I’ll deal. I went into the chemo room with a renewed fight. I’m fighting this bad boy. I named my breast tumor Negan. Because  Negan will eventually get defeated.

Now, of course, they took blood today and I am worried that my markers will go back up. She said the physical tests say a lot. I’ll hold on to that and have a deep convo with God tonight about keeping this path going. If you have a little prayer list, I’d appreciate the name drop on it.

As for next treatment, I’m thinking Ace Ventura.

Pre Round Three

 

Well I am full of piss and vinegar tonight, ready to talk to my oncology team about how badly this treatment was for me. However, like my daughter said, there were also a lot of factors that may have contributed to my feeling poorly so much. The bad long day with all the walking in the middle of a sick day, plus, ya know brain surgery.

I have my own ideas on what is causing so much sickness and why it is so late in the day that it hits me. I did my research and one of the side effects is the delayed digestion of food. Which makes sense, if it is taking too long to digest I’m gonna feel sick.

I’m thinking, just to try, maybe some pureed foods during my sick week. Who knows.

I have to conquer this. I feel too many good things changing in my body that tells me this is working. Maybe it’s a ‘Suck it up Buttercup’ sort of thing.

I’m tougher than this.

Treatment 3. Which makes me closer to Avengers Doomsday and 48 Hour Film Project which I am doing in September.

They are wanting to add another treatment for my bones to keep them strong. The only issue is, the first time is tough, so more side effects.

Great.

I am in need of really boring shows that are so boring, I can fall asleep while watching. The pre-med steroids make me not sleep. So if you have watched anything that put you out like a light, let me know.

Tomorrow I am going to treatment as a fashion icon. I plan on doing my make up (Thank you Margaret for the lipstick collection) and my outfit, well …. We’ll save that for pictures tomorrow. Let’s just say Elvis and a naked Sam and Dean from Supernatural will be part of it.

Here’s to a good treatment day tomorrow and here we go again. Prayers this round is better.

Brain Surgery

 Technically … I had brain surgery. Albeit Non-invasive, it was still called brain surgery. I got zapped today. They are confident it is a one and done, they gave me my mask. Which I left in my daughter’s car and my granddaughter found and played with.

My poor daughter had to drive me today. It wasn’t too bad because it was at noon. There was one point of check in, I gave my name and they said to go on down.

Down where.

UG. We made it. The waiting room was empty. They took me about twenty minutes late.

Was it hard? In hindsight no. While it was happening, it drove me nuts. I couldn’t move and that mask was tight against my face. I have never been one to lay on my back flat, I was tense so you can imagine my muscles were a bit sore. No immediate after
effects, but they can be delayed for about a week. Great. I have chemo next week.

It was the longest twenty minutes. I had them play music and I counted songs (After praying) And when I heard Phil Wickham’s Amazing Grace, I knew that was 5:33. A quarter of my treatment. I could do it. I swear though, I could see the beam in my brain. Eyes closed I kept seeing this purple sequence. I worried I was going blind.

I asked the tech if the beam was purple and she said, ‘No, a few flashes of white light’.

Hmm.

Anyhow … After, we made an adventure of it. There was a street vendor hot

dog cart and we had to stop. I never had a street hot dog. I made her wait in the long line, then I noticed a man, eating a hot dog in the park by me, He was giving money to a guy. The guy took his shirt off.

He offered money to the other guy, who refused. Then the man eating the hot dog took pictures of the man without a shirt. I of course, had to take a picture of the man taking a picture of the man without a shirt.

I sent it to my other daughter who informed me the shirtless man was

watching me.

“Were you being inconspicuous?” my daughter asked.

“No. If the guy is gonna take his shirt off in the middle of a park for money from a man eating a hot dog, he’s fair game.”

The wait was long but the hot dog was the best I have ever had. No kidding. My first street hot dog didn’t disappoint.

While I am happy that my next scan is not in the city, I will miss the excitement of that hot dog cart.

Take a bite ...

It is scary how good I felt today. I can’t explain that.

I don’t know if it’s because I was feeling so bad or I just feel really good.

And I ate!

A few months ago, before all this cancer stuff, I was at Heisler’s Market (A small mom and poo grocer with an incredible deli) and they had taste testing day. They gave samples of this sandwich, which was amazing.

A week or so later, I went to the store and asked the guy what was on the sandwich and he helped me get everything I needed.

Today I felt the need for this sandwich, went to the market, got the Deli Air fryer Turkey, Wisconsin cheddar, red onion, boors head honey mustard and the store’s everything bagel sour dough bread. I made the sandwich, topped it with lettuce and tomato and as a side has their homemade cucumber salad.

I ate every bite. I was stuffed. Couldn’t move. But didn’t get sick. Maybe that is why I feel so good. Food will do that to you.

I went to my son’s show tonight, wore my cap and pixie wiglet. It worked but got so itchy It was an emotional night. There was a span of time, a few years that my son was hard to handle.

It broke my heart to watch him go down that path but despite how much I tried, begged, prayed, and cried, he had to find his way out. It was a very hard road. Those who know me know that.

I joined a support group during that time and all the mothers listened to a song called, ‘Hate me’. I started listening to it because it gave me hope that one day my son would be like the guy who wrote that song for his own mother. Free of the demons. That one day I would stop worrying that the ‘phone call’ would come.

He knew I listened to it.

Tonight, years later, my son sang me that song. With all I am going through, I believe it was his way of saying, “Mom, you can stop worrying.”

He’s got a wonderful woman in his life, four years ago he got full and sole custody of his daughter. I’m proud of him.

I’m proud of all my kids, they do so much for me. I feel bad for leaning on them so much right now. A part of me believes that wouldn’t want it any other way.

Okay … so tomorrow is the one and done laser zap. I’ll take some pictures. If you think of it, I would really appreciate your thoughts and prayers.

Off to eat. It feels good to have an appetite again.

Pretty in Pink

 

What a freaking hell week. Now, honestly, during the day I was fine. Really. Maybe a touch of nausea in the morning, but it went away, I’d do my errands and even for the most part was eating  lunch daily. Not a lot. A small lunch. Crackers in between. Then the sun goes down, I am sick.

It makes absolutely no sense.

Nothing works. Maybe a hit of the vape I have, but that doesn’t last long at all. And I can’t hit it constantly.

Three bites of food and I am done. The only thing I can eat more of is salad and that’s like playing Russian Roulette right now.

Anyhow, like Barry Manilow sang, “I made it through the rain,” I sing, “I made it through the week.”

It will all be worth it. I believe it.

Yesterday and today have been good, so I have no doubt I am on the upswing of things. I have been wearing a cap around the house, not because I don’t want to rock the bald, but because my grandson likes it cold, and actually I like it cold too but damn if my bald head doesn’t make me colder.

Oh, oh, my other grandson is here tonight. I think I’ll put the purple pixie on and see if they notice.

You know, Sunday, I went to work at the church. I felt fine once I got there and continued on with my day. Took a great nap (This is all coming to a point, I promise). Finished off my edits for my publisher,  I went to the store, even picked my daughter up at work that night. BUT, when I went to get on my PJs I realized my shirt was on backwards. Noticeably backwards. I wore it all day like that and not a single person said a thing to me. I’m wondering if people were just being nice. “Oh, she probably has chemo brain, let’s not embarrass her.”

Crazy.

Anyhow, back on track. Feeling better. I do plan on talking to my Onc team about how harsh this cycle was.

Now to put on that purple wig.

*EDIT* I walked in the room with the wig, my oldest grandson just stared and my 10 year old grandson was like, “That looks good on you.” Hmm, maybe I'll get violet to adjust it and wear it to lunch with Terri on Saturday.

Rough Week and Random Thoughts

This has been a rough week. I think I jinxed myself when I told people on Sunday that I was handling it better than I did the last time.

I really feel I would have bounced back had I not had that horrible day on Wednesday. I mean, Tuesday I was fine. I ate a McDonald’s breakfast burrito and didn’t feel ill.

I am down ten pounds so I have to feel better enough to eat calories.

Nothing this week tasted good. Except that burrito.

Then tonight, I was really craving Applebee’s chicken wontons. I go to order … they’re sold out.

Seriously.

The first food all week that I craved and couldn’t get it.

Just a miserable week that I plan on making better.

I have fallen behind on everything. Hopefully I’ll catch up on my writing and edits for my publisher this weekend.

I did however find two books in my vault that I never published.

I may work on them as well.

So this week, I decided to jot down random thoughts I had, thought I’d share them with you…

While I am not feeling my best I still drive locally but I am left to wonder when I give someone a ride, What part of “I’ll drive you but I’m not feeling 100%” do people not get? Just because I’m sitting in the car waiting on you doesn’t mean you can take forever in the store.

I think I am going to have to nix that.

What does it mean when people say I look good? I mean, do I look bad and they are trying to make me feel better? I don’t mind them telling me I look good.  But I wonder.

Having cancer makes you read other people’s Facebook posts from a different perspective.

 It’s not like I read it and think, ‘wow you’re nail broke, try cancer’. No, it’s like I really read and think about what they post. Other people’s dilemmas take my mind off things.

 Recipe reels all look good when I can’t eat them.

 And finally …. Do people who post ‘prayers needed” and don’t give a reason think their reason isn’t good enough for prayers so they don’t say why?

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

Visitors

 

A different type of post.

Non cancer.

Just a weird experience post.

First let me start by saying, like most people I respect all religions and those who follow them.

That being said, excuse me for being tickled pink when two young Mormon boys approached me this evening.

They were so adorable.

Both young and handsome, both wearing glasses, white button-down shirt, a tie, name tag and both had on a knitted vest in this weather.

I needed to run to the Dollar General real fast for dishwasher soap. As I came down the stairs from my apartment, small garbage bag in hand,  they smiled, I smiled and nodded, then they asked, “Do you know Earl (Not real name).”

“Young Earl or old Earl,” I asked.

“Old.”

“Oh, yeah, he moved about three weeks ago.”

“That makes sense,” Simon (Learned from the name tag) said. “He is from our church and we haven’t heard from him.”

I conveyed how nice it was that they checked up on him.

And then I stepped outside.

They followed me.

“Have you heard of The Church of Jesus Christ of Latter-day Saints?”

“Who hasn’t?” I replied.

“That’s our church,” Simon said, then held up this black book. “Have you read The Book of Mormon.”

I told him I had, it was like twenty years ago when I was reading about all religions.

Then weirdly he said, “You were probably really cute back then.”

“I was hot,” I told them. “I’m a cute old lady now, but was hot back then.” I dumped my garbage.

“Would you ever consider stopping by our church?”

I looked at him and told him, “Honey, every Sunday I am busy. I work for a church.”

Then he was like, “So you go to church to make money.”

I looked at him seriously and told him. Money has nothing to do with it. It’s where I need to be, what I believe in and God and I are tight right now, working on something.

He nodded graciously and then asked, “Do you think we’d get in trouble if we hung around this complex, knocked on some doors.”

“No,” I told him.

“Do you know what building might be a good one to start at?”

Never one to exclude those I love, I thought about my Aunt Dot who lives in my complex and I told them about some sweet older lady who might be happy to talk to them. I sent them her way.

Although she may never make me homemade gnocchi again.

Diet and a Good Day

 

Today was a good day.

Other than randomly waking up at six in the morning to vomit. Not sure where that came from but I felt better after.

Actually I do know where it came from.

I meticulously have been keeping a diary of what I eat and if I have any aftereffects like nausea.

I couldn’t figure out why there are some days after lunch I feel full and horrible no matter how small of a meal it is, and some days I feel fine.

I had left over pasta for lunch, which had me feeling blah. Then a sloppy Joe for dinner.

Then there were days when food didn’t bother me at all. Like when I went to lunch with Terri.

What was the difference? I went into my food diary and looked at what I ate and how I felt and it looked like common denominator on making me feel bad seemed to be following meals with carbs/gluten. Bread, pasta. Although I did have fresh homemade pasta my aunt made, that didn’t make me sick.

Processed.

So today I had Thai soup (Tom Kha) no carbs and chicken lettuce wraps – no lettuce. (Too scared lol)

No problem, no sickening fullness.

I mean it could be where I am in the chemo cycle, then it may not. I am gonna try a few gluten free, lo carb days. Scratch that. I am still trying to figure it all out.

Anyhow I went to the doctor today. Wound care.

If many of you recall, I had that rash that turned into a wound and got worse. It’s been a struggle mentally and physically.

Watching it get worse. It went from tiny to big. I mean, it opened up so fast before treatment, before I saw a doctor, I don’t know why I expected it to stop getting worse because I went to a doctor.

Well, today the wound care doctor told me it is healing and on a great path. He pointed to the wound and said, “This is how you can tell Chemo is working. Keep up the good work.”

I felt so good. So hopeful.

I had to share the good news. Small step to victory.

I am embracing this day. It was a good one. Gave me pep in my step and not feeling sick was a gift. Yay. Hopefully I’ll stay this way until the next treatment.

going .... going ....

 

A funny thing happened on the way to Starbucks with my daughter … my hair fell out.

Okay, so it wasn’t that dramatic as if every hair on my hair dropped off. But it was jarring.

I was chatting to her about how my scalp has been itchy and my hair wasn’t normal. My friend Michelle was coming over after Starbucks to trim my pixie, and when I ran my fingers through my hair … poof. It was a like a freaking cloud of hair exploded from my head, got caught in the wind of the air conditioning and floated around like a cloud.

Thirty minutes beforehand I showered and washed my hair, I didn’t see any hair, but my daughter sheepishly told me, after a whoa,  ‘yeah, ma, it’s thinned out in the back.’

Michelle did a good job, but when she was leaving my house she told me to call her any time and she’ll be over with the clippers. She also did a really nice job shaping, thinning and trimming my hat wig.

My hair has thinned out even more tonight than it was this afternoon. I made sure I wore a hat while cooking.

I don’t know why this is bothering me so much. My hair hasn’t been a part of what defines me in a long time. I knew this could happen, I am just shocked that it did. And admittedly a little sad.

Everyone in that support group said those who lost their hair did so the week before the next treatment. Yep. Right on schedule.

They said some low percentage loses their hair on this. What I think they left out was the remaining percentage loses volume and goes thin. Having to buzz cut.

So this time next week I’ll be rocking the Eleven from Stranger Things look.

The pic posted is of the cut Michelle gave me today.

I have lots of beautiful scarves and hats. Maybe with this insurance I’ll go get some new glasses

A huge part of me feels really bad for my family that they have to see me without hair. That I’ll look weak. It’s bad enough they know I have cancer, now they have to see the physical signs. I dread walking in the stores and people staring.

My daughter asked, “Do you stare at people that look like they have cancer.”

“No,” I told her. “But I stare at the people who stare at them.”

I made myself a painkiller this afternoon and vegged to a movie, ‘Cold Storage’ I highly recommend it.

Tonight I’ll write and focus on how I can do better with eating in the afternoon. I can’t eat a lot and when I try, I get stuffed and sick.

I feel like I am on Ozempic or whatever that thing is called.

Over the Top

 

Hope all of you had a great weekend.

I felt fine, but tired. Not sure why, I have to try to hydrate even more. That has to be it.

Today I saw my PCP, lost some weight close to 8 pounds, but my blood pressure dropped.

I have been doing BP readings in the evening and noticed last week it started to lower.

I have always had high blood pressure, even with medication. When I was in the hospital I was in hypertension crisis.

Every appointment it has been consistently high.

But now it is not. He took me off of one of my medications.

So I will keep an eye on it.

Last week I had an appointment for an MRI again. Another brain one because they wanted to use the one at the cancer center. The ‘good’ machine. Why aren’t they all good? They said they may want to radiate that non cancerous thing in my head which would need to be done within 48 hours of the MRI.

I really don’t want radiation on something non-cancerous. I have read up on it. I canceled it and asked to reschedule in a couple weeks. MRI only. One, I just need to know how a chemo cycle is going to go without all these appointments and having contrast shot into my body. Two, they are doing major construction getting into town so an hour drive is now 90 mins.

They said, “Someone from scheduling will call you back.”

No one did. I went in this afternoon, into the app to check in for my PCP and there were two appointments for Wednesday. One for consultation and the other for MRI. The appointments are 3 hours apart, with the consultation being first. Which means, timeline wise, I have to leave at 9 and won’t get home until after 6. Yeah. No.

I checked my phone for missed messages … nothing.

They just scheduled without checking if the dates were okay. No, no they aren’t. So, they think because I have cancer my entire life is sitting around waiting for them to tell me where to go next?

Now I have to call tomorrow and reschedule.

It just irritates me.

I get it they want to double check what’s in my head, but that entire ordeal a few weeks back was a waste. Why didn’t I just go to the good MRI in the first place.

A part of me feels because I qualified for that special ‘pay for all breast cancer insurance’ that they are just taking advantage of it. Had I had my other insurance, I am pretty sure it wouldn’t have authorized another MRI so close.

Plus, okay, I have another reason.

The night before my first treatment, I woke up in a panic. Total anxiety. I literally had to pray my way back to sleep.

See my father died young. I kept a diary back then.

I am superstitious and had the coincidences and I wanted to cancel the MRI and radiation.

My father was diagnosed with cancer on June 7, 1988. (I was diagnosed on June 2^nd)

My father started treatment on July 6. (I started July 7)

My father had a massive stroke on July 16 from complications from treatment. I thankfully surpassed that nine day mark and my BP has gone down.

They started treatment again on my dad and ten days later, again, adverse reaction to the treatment, my father passed away August 2 1988,

I passed the stroke time line. I just want to pass my father’s timeline. I know things have changed in forty years, but I can recall as I approached my 48^th Birthday, being nervous until I turned 48 and outlived my dad. This is sort of the same thing.

Okay I am done being miserable about it. On a brighter note, Avenger’s Doomsday come out in a few months, the trailer was released. I am a huge Avengers fan.

Countdown is on.

7 treatments until Avengers!

Chasing Normalcy

 

I debated on whether I would write a blog, simply because it would boring.

But I know so many of you care how I am doing.

Yesterday, today really good days. I do believe I have turned the corner and will look at brighter days ahead until, well, next treatment.

I suffered today in a search for normalcy.

Life has been weird, understandably

My friend Terri invited me to go out to lunch and I thought, you know what? Why not. I was feeling good.

I stepped on the scale today and I am down eight pounds since I started treatment. I was bound and determined I was going to eat.

Light food. Tasty.

I got a cocktail. It’s called a painkiller. I didn’t even see what was in it, I ordered it. Wow, was it good and I couldn’t even taste the booze, which is good because every booze I try burns. A 400 calorie drink with pineapple juice, OJ, cream of coconut and rum.

Yeah, awesome. I am going to try to make one at home.

I ordered pot stickers and an Ahi Tuna Salad.

Terri asked, “Should you be eating that Ahi tuna?” And I was like if I can eat it and it tastes good, yes.

Everything popped and tasted so good. Then I realized that everything I had was sweet. The pot stickers had a ginger dipping sauce and the salad had a banana ginger dressing. I ate what I could and filled up fast, but I did have some more when I got home.

Three hours … not sick. Yay me!

So I got my medical marijuana card and excitedly had my ‘consultation’ with the pharmacist and hurriedly went to the medical marijuana store. I didn’t know what to get.

I went in and expected something else. Instead I am greeted with a woman wearing scrubs and stepped into a waiting room that looked like an Urgent Care.

Carpenter’s Music played over the speakers.

Such a feelin's comin' over me. There is wonder in 'most ev'ry thing I see

How eerily surreal.

I thought wow this is really clinical, until I was called to the back to meet with the bud master, or bud tender and this girl looked more of a stoner than my son.

She helped me get some stuff. I still haven’t tried it. No reason, I’m feeling pretty good.

Sorry for the boring blog!

Blinded by the Light

 It was the craziest thing today. Those of you in the northeast know what I am talking about.

The smoke from the Canadian wildfires has drifted downward and now we’re covered and in a heatwave.

Early this afternoon it wasn’t bad.

But hours later, my daughter needed a ride to work and I was like, ‘Sure, I feel good.’ And I stepped outside, you can smell the plastic and burning smell; it was beyond hazy and hot. 99 to be exact.

I drove over to get her and I was fine. However, after we got to the main road I thought something was wrong with my brain.

Suddenly I was thrust into a wasteland, a post apocalypse wasteland. It was surreal.

The sky was white, not blue, white. The sun was shining oddly like a winter sun in the snow and reflecting off the smoke. The roads looked white.

Hazy, white.

I was in an overexposed world. Had I had time to stop I would have gotten sunglasses.

It played eye tricks on me to the point I worried that something was wrong with my brain.

I was like, “Roni, is this me or it is like an optical illusion out here.”

“It’s not you.”

“Whew.”

However, when I took the side streets, the ones treelined with black top things got better. They keep going on about air quality but no one tells you how this is like post nuclear war and plays havoc on your retina.

I’ll not be repeating the driving tomorrow. Not without really good sunglasses.

So why did I leave the house in a heatwave with poor air quality? I felt good, really good today. I wanted a sub. I just wished I would have thought about the hot ham on there. Like bourbon, it burned my throat. I did manage to eat half of a half. Hey, it’s eating.

My grandson wanted homemade spaghetti and meatballs and I managed to dip bread in the sauce and nibble all day.

One day at a time for me.

Here’s hoping tomorrow is like today.

I still have church work to do. I should do it tonight because I feel ‘up’, but I am going to think positive that tomorrow I can get it done.

One thing I do need to do is adjust my own schedule to match up with my new biological schedule.

I’m a night owl, but the last couple months have slowly taken that away and have me up super early and tired early as well. I am not used to writing in the morning, but I have to start. And I have to listen to my body.

Tired?

Go to bed, if it is a reasonable bed time.