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.

Trying to get Normal

 I miss drinking.

It wasn’t just the taste of sipping bourbon, I never got drunk, I just enjoyed it. It was part of my lifestyle as a writer. Sitting at night, sipping a drink. Doing a shot when I crossed a word count threshold. 

It was a running joke in my family.

Not that I don’t have permission to sip an occasional libation from my doctor, I do. But the one thing I loved now tastes horrible.

Metallic and peppery. Even in the tiniest of sips.

I am a salty savory person, but as of lately, sugary gets rid of the nausea.

Speaking of which, someone commented mints. I tried one today after eating a half muffin at work, to hopefully feign off sickness … it worked.

I like to write these blogs at the same time every night, it gives me a sense of how I am feeling and progressing each day.

Thank you. I got some fabulous gifts in the mail from Jamie and Karen. Jaime sent beautiful scarves and inspirational gifts, a beautiful breast cancer bracelet. Karen sent me what felt like an eight-pound box filled with assorted mints and ChapStick! Wait, maybe it was her that said about the mints.

Anyhow the odd gift or rather odd timing of a Karen gift was the multiple mini packs of Kleenex. I picked them up at the Amazon hub around one in the afternoon. Two hours later my nose is feeling weird. Strange pulling pains, and  then it started to run (Sorry for the TMI). I’m not sick. But that twingy pain. I tried to get a good look in the mirror (Nose and mouth sores are common on this treatment) And lo and behold, my nose is running because I lost a lot of my nose hairs. They have thinned out. I think I have some left, but my nostrils look awfully bare. WTH? I thought the hair on my head would go first. I now have this pack of Kleenex in my pocket.

The true test of odd hair loss will be if those eight hairs on my right leg stop growing. Yeah, you read that right. Menopause gifted me with the ability to not have to shave every day.

Today was a good day, physically and emotionally. I got up, thought, ‘wow, I feel actually pretty good’, I had a little cottage cheese and with my pack o crackers and orange juice I went to work. A coworker made homemade blueberry muffins and I had half there and half when I got home. I also had a whole sandwich a couple hours later, but I took my time eating it. I cut it in fours and nibbled over the course of a half hour or so.

Tonight might be a different tale but I really hope this is a sign I am turning a corner into feel better days ahead before next treatment.