Peachy Keen

 

Wow, I have been bad with blogging! Last I blogged I was angry. I got over that. My son in law isn’t speaking to me lol. That doesn’t bother me.

So tomorrow is treatment four and two months since my first treatment.

As all of you know, my hair started thinning, I cut it short and then it kinda splotchily disappeared and I buzzed it. I buzzed it with hope that it was it. Well with the exception of the weird sideburns I have happening, I have like only ten percent of my buzzed hair remaining so I’m pretty bald.

Today … I showed my daughter and she confirmed, I have peach fuzz. Gosh, I hope it stays just on my head, I read horror stories of women getting it on their face too.

It’s white, but I googled and most peach fuzz starts out white or colorless. Unlike traditional chemo, this treatment is gene targeted so after your body adjusts, ‘supposedly’ the hair will grow back even if you are still in treatment.

Of course, these same experts said ‘supposedly’ I wouldn’t go bald, but here I am. While I still have most of my eyebrows and I no longer have to shave my legs, my right arm pit refuses to stop growing hair.

I am excited and nervous to see what tomorrow brings. I am praying my tumor markers went down. And I am confident I didn’t lose the weight I had the previous three treatments.

I keep a dairy of symptoms and color code the days.

Green is a good day.

Yellow means I had issues but rolled with it.

Red means the couch was calling me and I had very little energy.

Last treatment I had 11 red days, this time I had only four. But I did have more yellow days. I blame those on the sudden onset of acid reflux that I hope I have under control. Plus this last cycle I took my meds before I needed them.

This next cycle, so far, I am having nothing added to treatment so I will get to feel how it really effects me.

Tomorrow my son, Drew takes me to chemo, this will be interesting. Every kid of mine brings a different vibe. This is his first time taking me to treatment.

I have my wonder woman socks ready to wear (Thanks Katie) and I plan to be upbeat, positive and a tiny ray of sunshine for those working tomorrow.

I will keep everyone posted.

Infuriated is an Understatement

 

If you saw my FB post today I am livid.

Let me give you the background story. The background is not the source of my anger. FYI

 A year ago my son in law brings home a dog. He swore he got it from a coworker, who got it from a pound. She wasn’t cute or good and the pound thing was a lie. How do I know? Because the dog got pregnant. My daughter didn’t want the dog, never did, and told him to get rid of it. It’s been a fight. The dog is a terror. Won’t train and chews everything.

Get rid of it.

He swore and swore he had a home for it and was working on it. Now the dog is impregnated again. My daughter is furious and told him the dog goes or she does. My daughter’s best friend who happens to be married to my son in laws brother, got wind of it, and messaged him gently, telling him with all my daughter has going on, get rid of the dog.

She was nice about the way she said it. I saw the text. Well, he wasn’t having her tell him and came at the best friend hard. Like he was personally offended.

Now, the source of my infuriation. This is a screenshot of a text her sent her.

 

There’s a lot that pissed me off. They are run ragged? He’s run ragged? I see him once every other week and that’s when I drive him to the store because he doesn’t have a license. I’m not too sick to ask for that, am I? No one cooks for me, waits on me hand and foot. Brings me a water when I’m too sick to move from the couch. I’m alone. I take care of myself.

My daughter, not him, helps me with errands during the day. But I still drive there. And to use me as his excuse. To argue with her and his defense is my cancer card? How dare he? How dare he not only say I’m dying but call me the ‘F****g mother.’ This text is like his pity party Facebook posts. Disgusting. I told my daughter all of this. Maybe I’m over reacting. But damn it, I needed to vent.

Again, to repeat my Facebook post, no one dealing with cancer is dying. We’re trying hard to beat it. To say I am dying ….and to do so as a point of argument to make his sister in law feel bad. What a piece of work.

Rough Week

 

I know. I know. I make it look easy. Actually I don’t. Sometimes I feel like a big baby. Constantly complaining, making my way to the couch because some days, sitting on my reclining couch is the only thing that makes me feel better.

Week two sucks. Even though my daughter insists I can’t really come up with an average until I had four treatments, I can pretty much say with assurance, week two sucks.

Week one is when I get treatment. Usually I am good, a bit hyped from steroids. But once they wear off, the danger zone begins.

This cycle I took preemptive anti nausea, It really helped to keep it away, it didn’t help increase my appetite though.

 I thought I was doing better, then day eight, start of week two, despite meds, my energy drained and along came the queasiness,

Now I’m not sick 24/7. It comes in waves and usually lasts hours. The previous two cycles I got hit in the evening. Now it’s hitting me in the afternoon, by four pm, I am struggling.

I know my lack of food is a big part of the problem. It’s easier to say, ‘try to eat’ than it is to eat. I am living off ritz crackers, applesauce, pudding and broth, while getting calories from sucking on mints and ginger chews.

Yesterday was a good day, I mean I felt really good and ate. But today ….

I keep telling myself I am coming out of the second week It will get better.

But I wanted to explain why there hasn’t been a blog this week. I decided that when my body was feeling like it was against a wall, I was going to listen to it and relax.

It’s not just the chemo fighting the disease my body is hard at work and I need to remember that.

I am trying to stay positive and for the most part I think I am. I mean, I still get up and go out for Starbucks and errands, I haven’t changed my daily routine. Sometimes that routine just wears me out.

I hate complaining. I also have to accept my life has totally changed and it’s a roller coaster now.

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.