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!