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.