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.