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.

Short Update

 

I’m still learning.

A woman in a group I am in posted to be careful of feeding the nausea. It’s a vicious cycle.

Which, thinking about it, makes sense.

My stomach gets empty, I get a twinge of nausea with the hunger, so like I did with morning sickness, I eat.

Only it doesn’t help, it makes it worse.

I am going to try always nibbling on something. Anything. I need to eat. I’ve been nibbling on Ritz crackers this evening with flat coke.

Yesterday was a good day, except you know, after I ate, then I was sick for a bit. Even with the smallest amount of food.

Today I felt really great. I mean almost myself.

Then I had a very small lunch. And again, it hit me. I have been charting all my symptoms, so next infusion I know what to do and know what’s coming.

Is that possible?

According to people in the support group, things subside by day 10. I’m on day 8. Again, three bad days isn’t bad, I shouldn’t complain, but I am.

Hopefully tomorrow the ‘I feel good’ will last even longer. Mentally, I am still strong. I tell myself that what I am feeling is because the treatment is kicking ass. God’s got this.

I don't think it will be long before my hair goes or really thins out. It's acting very weird and looks odd.

Sorry for the short blog, but wanted to update you.

Maybe someone can explain this daylight savings time law they passed. What does that mean?

Ug ... When You're sick, You're sick

It finally got me down.

Physically I mean.

Sunday morning, I got up. I was fine, it just takes me an hour to feel motivated. I went to work at the church. Went to Starbucks, did my Walmart Grocery order and was fine, I wasn’t hungry, I did force some soup, then I took a nap.

That evening about 7 pm, something was off. Sniffing alcohol wipes didn’t help and I wasn’t feeling well enough to drive to get a frozen coke. Which by the way really do help me.

Around 9ish, I am at my computer and a wave of nausea hit me like I hadn’t had yet.

Next thing I know I am in the bathroom, sitting on a little pink stepping stool and embracing the porcelain throne as if it was a long lost friend.

I felt so sick. I didn’t want to take the Compazine because it makes me tired, I have this fear of vomiting in my sleep. So I held off. I had one Zofran and took it around 11. It worked. Didn’t make me tired. I still wasn’t very hungry, but I ate some soup.

They called in a prescription for me.

How do I feel now twenty-four hours later. Good. Much better. Even different.

A friend asked me if I could feel the chemo in my body. After a brief pause, I answered yes. Because there’s a feeling, an emptiness, almost hollow feeling, a vulnerability, that courses through your veins. It takes strength from you but you know that strength is working elsewhere in the body.

A mixture of pre-stage jitters and hunger.

Sort of like the body is short staffed at a restaurant because all the really strong parts are working elsewhere.

It’s only been a week and I am still figuring this out. Again, hating to beat a dead horse, that CT with oral contrast the day before my first infusion didn’t help.

I am glad I was able to work all week, that I pushed through.

I really, really hope I reached a turning point. It’s horrible knowing you feel good and waiting for the shoe to drop.  It’s coming. It’s coming. It’s here, no matter how mentally strong I was, it caught me.

But as I told my son, if it was the worst day of the cycle, I did pretty darned good.

I’m learning what to do. It’s all new.

I just know I have to take it one step at a time. One day at a time.

Anyone watch the new Little House on the Prairie yet? I’m thinking of watching that. Also, if you comment, no need to sign in, just put your name or initials in the comments unless you want to remain anonymous.

Tired but pushing through

I’m not going to complain or say it was a bad day, because I am sure others in my position on treatment feel far worse.

A slight twinge of nausea here and there. Nothing sniffing alcohol wipes doesn’t help. I’m staying hydrated but I am not getting the small meals thing. I understand why I have to do it, but I am doing it wrong. I don’t eat a lot but sure enough two hours after eating I am tired. Like since yesterday. Bam, body tired. If anyone has ideas for small meals, let me know!

Today I felt fine, went to Trader Joe’s made lunch and two hours later .. tired. I took a nap. Got up and still felt tired. I finished all my church work and uploaded it, wrote in my new book, emptied the dishwasher, did my Duolingo, but the lack of energy is making me feel lazy.

Of course, I haven’t slept through the night since Saturday a week ago.

Plus, I didn’t get my Starbucks today either.

Or, well, you know, it could be the chemo.

I think before I post this, I’ll step outside and walk a little to see if that helps.

It’s 9:45 and I haven’t had dinner, I will though.

Hopefully, I’ll have more energy tomorrow.

Sorry for the short blog, I’m just drained.

**Took a ten minute walk, got some fresh air, feel a little better.

** Edit – It’s now been an hour after my walk, and a cup of Earl Gray later and  feel good, energized.

Trudging On Day 3

 

Here I am writing his from the car, I sent my daughter into the store for me. (Important to note that the time I and writing this and posting are probably hours apart) 

 After another restless night, getting up every two hours for a half hour, feeling fine but unable to sleep. I woke up today still feeling fine but with a feeling of nervous energy. The nurse called to check on me and I told her about the sleepless nights and nervous weird feeling and she told me it was probably from the steroids they gave me. They last three days.

I got a bunch of wig stands and Violet played dress up with some of the wigs, good
and bad and it was almost unfair how freaking good she looked in two of them.

Then I realized why they said eat small meals. I made me and Violet lunch. Jersey Mikes subs and heated up leftover Congee. If you’ve never had it it’s fabulous and the Asian community loves to make it for people under the weather. Their chicken soup. Maybe I shouldn’t have put that hot pepper relish on my sandwich. I made the mistake of being stuffed.

About 5:30 I got hit with a wave of heartburn then suddenly tired. I took a two hour nap!

Physically no sickness yet. Just body exhaustion. Hence why I sent my daughter into the store while I sip on a frozen Coke. I think the steroid is wearing off. But I’m feeling more energy as I write this or perhaps it’s the frozen coke.

Gonna still try to plow through this. But nap as needed and get up and go so I don’t become a slave to my own couch. Filling you in so you know and this helps me track what’s going on with me so I can plan things on my ‘good’ days.

Day Two

 They call it day 2, Day 1 being the day of treatment.  I thought I would share a little chart.

Today I felt good. I let my body tell me if I was going to work or not at the church. I didn’t set an alarm, I was up pretty late, trying to get through Project Hail Mary and sure enough I got up. I had my one cup of coffee allowed during the day and a glass of water.

I’m supposed to drink 64 ounces of non-caffeinated beverages a day. Hey, if that keeps me feeling good, I’ll suffer through that much liquid.

This evening I had some watermelon and it was so refreshing. If anyone has not-too-sweet hydration ideas, please let me know.

As the day progressed I felt better and better. It was nice after two days of pain, horrible pain with that lymph node for it finally to subside.

And yeah, those three days of soup and light sandwiches .. done. I’m starving.

But I have that feeling the shoe is gonna drop.

I’m ready. I have that chart lol. Not that I’ll follow it.

I know it’s silly being worried about work, but I want to work. I am hoping I don’t have to miss any work, but if have a backup if I do.

So, I can’t express enough how incredibly grateful I am for the support gifts that arrived. My friend Katie, who was so instrumental in my getting help, sent me boxes of stuff. 

If you can’t see by the picture, there are tons of comfy socks, caps and beanies, a hot comb, blanket, and wigs, one of them is spectacularly nice. I actually ordered a set of wig stands from Amazon. She had them all in nice boxes, I want to let them hang out and I’ll play with them, give them names and then do a fashion slide show.

Yesterday in the waiting room, I watched women walk in. I really didn’t know what to take with me except for a drink, and figured I’ll figure it out. But every woman that walked in had this big bag, they were all the same size, shape, but different colors. To annoy my daughter, I would whisper, “She has a big bag. Look, another big bag.”

“Yes, mom, I know.” And Allie frantically searched Amazon.

“Another big bag.”

“Yes, Mom, I know. I see.”

“You don’t think they’re internally making fun of me for having a Dollar Tree plastic bag.”

“We’ll get you a big bag like these women.”

And BAM …

Today a box arrives, my friend and longtime reader Marcella, made me a blanket, (Made with love and prayers) and what does she have it in? A big bag! Same size and shape! I was so excited.

It will hold the blanket of the day, socks, bag of chips from Canada, a sandwich, my reiki bag (Also a gift) and drink.

I know, I know it’s a treatment blanket, but I used it when I took a nap today!

I will use each blanket, alternating them each treatment. I am so grateful.

Now to have some protein. Thank God I finally finished Project Hail Mary. It took me Four Days but I pushed through. I needed to see why everyone loved it. I haven’t figured that out yet.

Ah heck, we're off and Running

 

I’m off and running or walking because they didn’t let me move too fast.

Ya know that freaking CT scan did a number on me. The upward position of my arm really hurt and caused it to swell, compression, elevation, nothing worked.

And boy did I complain to the doctor about that procedure. She said since my scan was clean the next one we can do without the drink. Yay.

Back to today, she was explaining everything to me after the exam and pointed to my arm and said, “We expect that to go down when they lymph node swelling does with this.”

It was unpromoted. I didn’t ask. I’ll take it.

Holy Cow in a field of flies …..Was this a long day.

A battle through rush hour to get to the hospital. I check in for bloodwork at 8:36, 9 minutes early. They take me back right on time. Now I know I have to wait for results before I see the doctor and start treatment.

I go back to the doctor 15 minutes early only to find out not all results were in. Okay,

It took another 90 for results because some machine was down.

Finally, back to treatment and they didn’t have comfy chairs so they put me in a bed! What no! My arm. They gave me pillows to prop but I know I have to move.

"Can't I have a chair." I asked.

"We're full, you can wait."

"No."

I got premeds and treatment.

The whole thing was so long because they gave the medication slowly and had 30 min observation intervals. Four hours.

They did serve lunch. Allie got me soup as well.

I was happy to get home. I am planning small meals over the next couple days, they say eat small amounts a lot during the day. That means not skipping breakfast. I am hoping for the best so that I am not flattened by side effects but realistic and strong enough to face them. This blog will help me keep track of when I feel things.

I got my alcohol pads ready to sniff to ease sudden nausea.

I need a video to show you guys the wonderful stuff I have received. Every thing was and is amazing and I started using them.

More tomorrow

Let the chemo begin but first ....

 This blog is a vent.

If you listen closely, you will hear the echoes of me screaming in complete frustration. Another medical test and yet another test no one warned me about.

I’m not talking people I know, I am talking medical professionals.

I had to get a CT scan of my abdomen which completes my body scan.

If you ever have to get a CT of your abdomen with contrast, be forewarned.

No one said anything.

It wasn’t in the details section of my chart.

No mention of ‘get there an hour before your appoint to prep for hell’

Nor did Lynette warn me.

Who is Lynette.

The miserable receptionist that said to me, “You’re having contrast, I’ll get your drinks.”

Wait. What?

“Lemon, Orange or tea flavored,” she asked.

She wasn’t talking coolers.

I chose tea and I’ll never drink McDonald’s Sweet tea or any other sweet tea again.

I knew when she slid open that window she wasn’t there to brighten my day. I knew when I handed her back the information sheet and asked, “I don’t know what this means.” And she replied, “Neither do I.”

Window slam.

I was in trouble.

After she puts the bracelet on me, she brings out two LARGE Styrofoam cups and tells me I have one hour to drink both.

They were huge. A total of forty ounces. When she handed it to me, you would have thought it would be nice for her to say, “Hey by the way in a couple hours, you’re going to have horrible gastrointestinal issues.”

Or.

Even if not Lynette, how about the chick that did my IV. I bitched to her about how bad the drink was.

She could have said something.

Back up. Why did I have to get an IV in my arm when I went through all that to get a port?

Or the CT scan ladies. Who also put that warm weird stuff in my IV.

I was miserable.

It was a miserable day. I have that inflamed and painful lymph node under my arm and holding my arms above my head for fifteen minutes was torturous. For both the lymph node and port side.

No one. No one said a word about the ‘After’.

About ten minutes from home, I started feeling queasy.

I ate a cracker.

Despite the fact I drank a ton of water to flush my system, it still hit me like a ton of bricks.

I thought something was wrong with me, that I was having a bad reaction, so, I did what anyone would do. I Googled and sure enough, thread after thread about it. It’s normal. Some folks were told to take the rest of the day off, some, like me, blindsided.

Finally by seven and after a long nap, I felt better.

It was a scan, a freaking scan. I will take the loud noise of the MRI any day over this.

Dude, why would they schedule something like this the day before Chemo?

When I go in tomorrow and have my doctor’s visit, I am going to tell them about this. And I’ll tell them to let people know it is not a pleasant experience.

I’m pissed because I have Chemo and know my feeling good days will be slim and they took the one day away from me when I was able to feel good and do things.

And didn’t tell me it would suck.

I’m getting ready for tomorrow. I got a large wonton soup for tomorrow and made sandwiches for nibbling and small meals.

It is going to be a long day for the first infusion. They have to monitor me before they send me home.

There was a bright spot to my day. A friend had sent two boxes of stuff for me. I loved it. And I’ll tell you all about it tomorrow. I am going to try to write on my phone while getting treatment. Not sure how that will go.

Thanks for letting me vent.

**UPDATE** just say my scan results. No new cancer in the abdomen or lower region. Another win!

Preparing for the Week

 

Since I don’t work a normal 9-5 job, any time I have to get up early crushes me. Not that I sleep late, but I like to set my own clock rules.

Sunday and Wednesday at church mean that I have to get up early.

Okay two days I can handle. But now, with all these tests, scans and so forth, getting up early because I have to travel into town has become the norm.

I hate it.

It not only adds an extra hour of travel it’s an extra hour earlier I need to get up.

Tomorrow, I have a full body scan at 9:00 am, last one for at least 6 weeks. Yay!

Am I scared? No.

Am I worried that more ‘spots’ will pop up.

Actually no. If they do, they do.

At this point it doesn’t matter because it already  hit my lymph nodes, and with this type of breast cancer, once it does that … boom like shrapnel it’s everywhere. It’s all the same cancer that the treatment will fight. It doesn’t matter here or there, it’s going after it.

Tuesday is my first treatment. 100%  full strength, Extra long. First go.

Am I worried? No.

Am I scared .. yes

What will I face? What is going to happen? Will I have debilitating symptoms like nausea and stuff or will they feel like a minor inconvenience?  I will not know until I undergo the treatment.

One thing I do know is what they told me I can and should not eat during chemo. Number one thing is sushi and raw fish.

Wait. What?

That is the bane of my existence.

So today, Sunday, my daughter took me to my favorite place to eat., a place she works (Thanks discount)

I loaded up on all the things I can’t have during chemo. Oysters, raw fish ….

It was an amazing lunch.

But there it was …

A fun time. A waiter that was clueless. Normalcy. Until it wasn’t. Here’s the video;

Until tomorrow when I really unload it all on you. And by the time I post tomorrow I should know about the scan.

Could I rock this Look?

 

I don’t expect many to read this today or tonight with it being fourth of July. But I thought I’d give an update.

Yesterday, I felt ok. Tad sore with movement. Today I went to get a Starbucks and made the fatal mistake of putting on a bra.

I took it off as soon as I got home. Tomorrow when I work at the church, I’ll shove extra gauze under the strap. I did discover when I changed the bandages that I have a huge bruise on my chest, I would take a picture but that would include my boob and I don’t want to get flagged for granny porn.

It’s about six inches long and four inches wide. I immediately hit doctor google and saw that it was normal to bruise and for it to even spread across the chest.

Other than that I think the stress of everything is making me tired. But I feel good.

I have a scan Monday morning and should be the last scan for 6-8 weeks. Then Tuesday, well we all know what Tuesday is.

As I said at some point, I was reading on the support group for this treatment that many women lose their hair shortly after the first treatment. So of course, I am on the wig journey and I have learned that you get what you pay for.

Two of my Shein wigs (Less than ten bucks each came in) and nothing like the pictures or the reviews! My Jocelyn wig (From, Schitt’s creek) Looks more like Debbie Does Dallas and my Merle (Devil wears Prada style wig) looks like Thelma from Mama’s Family.

The really good wigs are upwards of 400 dollars and some around a grand. My friend Jen said to reach out to the American Cancer society. So Tuesday when I see my oncologist I will get the required prescription for ‘Cranial Prosthesis’. I just want to be ready. I know Michele will come and buzz me but I will have spots. I want to wear different ones and have different personalities.

Another friend who has been there done that with BC, mailed me a box with wigs, caps and scarves, it should be here this week. I am excited. And I promise once I get them all together, I will post pictures of me in these wigs. Including Mama’s Family.

For now, I think I’ll watch some drag queens youtube videos on making a cheap wig look better. If I succeed. I’ll post pictures, if you don’t see pictures, then Mama’s Family Wig was helpless.

EDIT – Epic fail, even tips from the best drag queens can’t help. The only thing that makes this wig look better is a hat.

Vein of my Existence

We’ll call her Mary (Not her real name) She was something out of Mr. Rogers neighborhood. She was my nurse today. I had two. A pre-op/post-op nurse and an operating room nurse.

Mary was a great mixture of Miss Rachel and Mr. Rogers, probably more Miss Rachel.

You know what? I’m gonna call her Miss Rachel. And I mean that with utmost respect. She was kind, upbeat and perfect disposition.

Today went well, usually I write my blogs around midnight, but I am writing this now, because at 9:00 pm, the numbing agent is starting to finally wear off and I can feel the irritation and pull now. I had a good go. They said 4-6 hours, I got ten. Then again, I took a two hour nap.

I had a hard time sleeping last night, as you can guess.

I fell asleep around 330 and was up at 5:30. I wasn’t nervous or filled with anxiety, I think I just wanted to get it over.

I had to drive into the city and be there by nine. My sister came with me

When it was time, I was greeted by Miss Rachel, and not just a friendly hello, she smiled widely and hugged me. She took me and my sister back into another waiting and changing room, asked if I needed help undressing. I said no.

Then to an exam room. Where she did the vitals thing, put an IV line in my arm, then cheerfully explained the procedure. She told me that I would get a local and mild sedation, then said in the up voice. “You’ll be awake but not remember the procedure.”

“Does that mean I won’t be sleeping, I can be talking.”

“Yes, but no worries, you won’t remember what you said.”

UG. No. Immediately thoughts from my writer’s mind took off. Would I talk about Beginnings, Frank and Joe. Good God, I mean, I am always thinking about what I am writing. What if I spew out I am planning of destroying Steubenville, and wake up to FBI staring me down.

Um, no. I’ll pass on the sedation, thanks.

She then said if I want they can give me pain medication.

“Will it make me loopy?”

“Possibly.”

“I’ll pass.”

She seriously looked at me and said, “Don’t be a martyr.”

“Oh, I’m not, I just don’t trust what will come out of my mouth. After about 40 minutes in that room I went to the OR. It was like sci fi, the table moved, this machine above me circles me. They painted me with this blue stuff. The tech complimented that I was the easiest vein to find in his career. Cool.

I was awake during the procedure, not sedated. And I still talked the entire time. I could feel the pressure of the procedure, no pain. They told me to pick my port music. I of course picked my favorite country/Cristian singer. They never heard of him. My OR nurse loved his voice and looked him up. She commented, “Wow he’s attractive.”

“Yeah, he’s hot. I met him,” I told her. “But he’s surprisingly skinny, like borderline crackhead skinny. No offence to anyone in the room that may be a crackhead.”

At that point I felt the doctor pause and she laughed loudly.

Damn filter on me again.

Anyhow it finished, I had more problems with laying on that table for an hour. My back hurt for at least an hour.

Leaving the OR, I took off my blue hat and decided to make my hair look crazy for my sister (Reenactment picture),
but Miss Rachel saw me first, looked horrified and was like oh, you poor thing, Let me help you.

She grabbed my arm to escorted me back to the waiting area where she fed me crackers and Pepsi. She said, “Sit here, when you feel steady, get dressed, but not before you feel steady.”

“Ok.”

“When I walk out of here you’re gonna leave aren’t you?”

I just smiled and thanked her.

Now to relax. I’m gonna kick back on my reclining couch,  I was told that was probably for the best so I don’t roll in my sleep. Binge watch From Season 4 and if I fall asleep, so be it. AC is pumping, I’m set up all cozy with pillows and a blanket.

Growing a Pair

 

It was a good day. I had lunch with my aunt and it was nice to spend that time with her, my daughter came too. It took my mind off of things.

Lots of phone calls from the hospital today.

The Port nurse called with questions and instructions. She seemed rather flighty to me.

My oncologist called to discuss next week’s treatments and said, “How about how great those Echo results were.”

My nurse oncologist navigator called to prep me with information for treatment. Apparently, I am going to be there this first time for HOURS.

And then I got the courage to call Steve. He had reached out to me but I just couldn’t talk to him. It was hard. It was Steve. Those of you who know me know how hard that was. He was also co-writer of my new theme song and said he would happily help record it.

I thought a lot about Ron Brown today, my kids’ father. How close we were and of course, how competitive we were. How he was such a huge creative influence in my life.

Today was the day for saying things out of the blue, I told my daughter, “I am going to live longer than your father.”

To which she replied, “Why are you still competing with Dad?”

“Because he’d want it that way. We always competed.  In everything.”

He was fifteen years older than me. That’s my goal at least!

Anyhow, I went to my son’s show tonight. I didn’t do stand up, I was in the mood to just watch. It was wonderful. Strangers, no social anxiety. A friend I’ve known for decades was there he had no idea what was going on with me and it was so awesome to get a hug that wasn’t sympathetic if that makes sense. Glad to see you sort of thing.

I realized tonight that my social anxiety has to do with facing people with my disease.

Family functions, church.

Speaking of church.

I think cancer removed my filter.

Not that I had much of a filter as it was, but now it’s gone. Almost as if I can’t control what comes out of my mouth. We were at church staff meeting and when asked my thoughts on the new, young Associate pastors’ sermon, it just rolled from my mouth in honesty. She looked at me with daggers and shock. I was being honest. I apologized for being blunt. But it was already said.

Before I could stop myself … I just started ranting.

I don’t like that side of me. Maybe subconsciously I am thinking life’s too short to not be honest.

I’m tired. I hope I can get some rest. 6 am comes early. I did write tonight as well.

Tomorrow … port of de insertion. Am I nervous? Heck yeah. I’ll fill you in.

Struggles and Weirdness

 I’m excited I wrote tonight in my newest book.

It’s hard to explain but sometimes I can’t concentrate too much for too long, I am constantly filled with thoughts and worries. You know it’s bad when I don’t spend an hour  a day on food porn. Yeah, that’s a real thing. I love looking at food.

Perhaps now that this latest test is under the belt it will relieve some pressure and stop the worrying.

What will the test show? What is next?

Am I strong. Yes, I am. I have a very matter of fact out look on this whole thing.

This is what it is. This is what I need to do. I am not scared, because I know I am stronger than this disease and so is my God.

Still there’s this new level of anxiety. Like, I was always an extravert. Now I don’t really want to go around too many people.

Birthday parties and family events are hard, especially when confronting people for the first time after diagnosis.

They are all kind and gentle, but they look at me with such pity.

Don’t pity me. I’m not dying, I’m fighting, I’m living.

My fight has just begun. I know this. And all of you will go on this fight with me. Watch me kick some ass. Be my cheerleaders.

I have four awesome kids who lost their dad and twelve amazing grandkids, Tons of friends and my readers … oh my God, I can’t tell you how much you inspire me.  I’m not going anywhere I have graduations to see, weddings to attend and books to write.

However, I can’t get over this social anxiety. This is new to me. When I am home, I’m fine. One on one … good. But bring a ton of people, I just want to run.

I feel like everyone is staring at me. And I haven’t even started looking like the chemo girl.

Tomorrow (Wednesday) I am going to go to my son’s open Mic show. See how I do in a sea of strangers. Who knows, I may even do a stand up set. If I do, I’ll video it so you can see.

Oh, shoot I had my EKG and Echo today. I hardly slept and was up at 6 am, four hours before the test.

I needed to pass this. I need to be strong enough for the Enhertu. And I got the results.

Everything about my heart is normal.

Such great freaking news. I said to my son before the results, ‘Every time I get a test or a scan, something bad pops up’

He said, “You need a W.”

A win.

Yay, the echo was a win.

Wednesday is staff at the church and my son’s show. Let’s see how that goes.

Thursday is my port placement and you will see a video of that. Not the placement but me going in. Unless they let me film, then in that case I will.

Until next time …

Strength from Others

First let me say thank you to all of you who are reading my blog. I honestly feel that as the night winds down I am talking to someone and they are listening.

Today was weird.

I woke up feeling, well, down.

I am woman enough to admit that I am scared about this echocardiogram, because I need my heart to be okay to be able to get this treatment.

I woke up this morning and the first thought that came to my mind was, ‘OMG I have this test tomorrow, what happens if my heart isn’t strong enough?’

It was a weird state of anxiety and panic, I never felt.

I read emails, wrote emails, read the news, everything I could think of not to think about this test. But it was there. Forefront.

This is important. I need to pass this test to get the Enhertu clinical trials.

I asked the oncologist, ‘what if I don’t pass’ to which she replied, we’ll find another way.

This treatment is miraculous. I can’t not pass. I have never woken with panic.

I plan to drink decaf tomorrow and not have my daughter drive me so my heart can relax.

It was a strange day of lots of things going through my mind.

Then I opened the door to leave for errands.

There outside my door was a HUGE box, all around it was marked ‘gift’. It was from a reader, a fan and amazing person, Carla.

The card inside the box held the words I needed to read. Encouragement, strength, you got this.

She sent me a beautiful quilt as you can see by the picture and snacks from Canada.

My anxiety day started to lessen and when I checked my mail box when I got home, there were three cards or support!

It was as if fate and God were telling me to Chill.

I read those cards, those inscriptions, closed my eyes and said a gentle thank you to God.

I know I am going to have bad days. This was one of those not so strong ones, but the moment I got down, I got signs. The cards, the box.

All of them uplifted me.

I’m still terrified about tomorrow, but I also  know, there is nothing I can do to change the outcome of the test.

No caffeine or Allie and her aggressive driving.

It is what it is.

Not in my head

So yesterday I wrote a blog. You may not see it now, I made it private. Basically, the blog was about how me and my siblings reunited after years. How proud my mother would be.

I honestly didn’t think anything was wrong with the blog, I really didn’t, but it bothered one of my siblings and the early morning text telling me about it, prompted me to make it private.

I wasn’t letting it take over my thoughts or make me feel bad, because I didn’t have any ill intentions. I have other things on my mind, it was my blog, my story.

But my story upset someone.

Am I mad about it? Nope. I don’t have time for that.

Will I tell the other siblings about getting the message.

Nope.

I don’t have time for that.

Nor do I want another rift, which we are healing as a family.

Moving on.

Struggles.

So I was thinking about my son’s show this up coming week. Nestled in-between the cardiologist and port placement. I always like to do stand up and I was wondering what song he’d sing for me.

Then in a weird switch of thought, I remembered Beginnings and a song I wrote with my husband at the time, as a Beginnings theme song. I went and found the recording from almost twenty years ago. And the words .. omg, the words are so fitting for what I am facing. Like I wrote my fight song twenty years before my struggle. That’s the name of the song, The Struggle.

If you want to hear it, you can find the original and bad basement version here.

I reached out to my kids. I asked them to redo the song so I can listen to it with each treatment,  Let’s remake this song.

It’s going to be my fight song.

If you don’t want to listen, here are the words.

 

[Verse 1]

So much has happened when I look back now

My heart has pulled it through somehow

Spirit inside of us that strives for life

It gives us strength and will to survive

 

[Chorus]

The struggle will become a fight

Will we beat it me and you

When the darkness becomes a light

Can  it pull us through

We hear voices, they are calling us

Can they be a friend

Do they tell us to quit right now or

Fight it to the end

 

[Verse 2]

Is this real., is that what we face

With hope we can find a place

Together there's more than meets the eye

It takes more than one to keep it alive

 

[Chorus]

And the struggle has become a fight

Will we take it me and you

The darkness of the earth and  sky

Has made us see the truth

And we see what we now must face

We listen as they speak

The voices that are guiding us

Are now within our reach

 

[Bridge]

Hold on

We have so much so much to do

Hold on

We can make it me and you

Together we are strong

 

[Chorus]

And the struggle has become a fight

We beat it me and you

And the darkness of the earth and sky

Has finally pulled us through

And the voices that are calling us

They become our guide

We can move the heavens and the earth

If we all stand side by side

A Ray of Light

 I got some good news. It put me in an immediately good mood. As many of you know I am severely under insured, I was paying $100-$150 every appointment as a co pay.

Wait.

Good Lord, if I am paying that much, how much is the doctor charging.

Anyhow, many people do not know this, fortunately I have a friend who work for the state and told about BCCPT.

According to google - The Breast and Cervical Cancer Treatment Program (BCCTP) is a Medicaid initiative available in all 50 states and Washington D.C. It provides free or low-cost full-scope Medicaid coverage for uninsured or underinsured individuals under age 65 who have been diagnosed with breast or cervical cancer.

It pays for everything. I mean everything, even reconstructive surgery.

I applied. Yesterday phone calls were coming that my insurance wasn’t paying for my port and I would be responsible for the $4000 procedure. My treatments would cover only 40% of the 9,000 per pop chemo. I felt as if I was financially drowning, And then …

An email from the social worker today. I was approved for the BCCPT. I will have full coverage, everything starting July 1^st.

I can not begin to express how happy that made me. I was worried, you know, four appointments in the next week, how was I going to do that co-payment. But apparently, I have to only do the co pay for one, on the 30^th.

It was approved that fast. I uploaded the revised paperwork on Wednesday the social worker submitted Thursday and was excited to tell me I was approved Friday morning. I don’t believe she knows how much this made my day.

So treatment begins July 7^th. A new treatment, once every three weeks. I joined a support group for this new treatment. Most women lose their hair within a week of the first infusion. I'm ready to rock the hairless look.

I plan on getting a buzz cut when it starts to fall out. BUT those of you who watched Schitt’s Creek, I am going to be Moira. I am going to have wigs and name them. Here's a link to her wigs. This is where I come to you. Help me pick out wigs. If I choose a wig you suggest, it will be named after you.

The picture is of me wearing my first Amazon Prime Day wig. I’m calling it Jen.

Let’s all have a great weekend.

Let's get ready to Rumble

 

A funny thing happened on my way to my Radiologist Oncologist appointment.

I missed it.

Not only did I sleep in and wake up ten minutes after the appointment, I wasn’t going to make it on time to the church for staff. Fortunately, it was fine if I stayed home. I called the radiologist scheduling and left a message.

About thirty minutes later they called back. No problem, the doctor was running late anyhow and could I make 11:30.

At that point I was positive I wouldn’t sleep in.

He did call back, it was a video appointment, and he thanked me profusely for being accommodating and switching my appointment.

Oh, sure doc no problem.

I couldn’t help but be distracted by the fact he was in a cage. Not like a dog kennel, but UFC fighting cage. An octagon or maybe a cage used at WWE.

He was seated, back against this fence. Young guy, probably younger than my sons.

Anyhow … as expected, every phone call, every visit to the doctor brings something new.

Apparently, other than the meningioma (Benign tumor) I have two spots of cancer.

He called them miniscule and was certain the Enhertu would eliminate them. He wouldn’t even call me if it wasn’t for the benign one. He doesn’t want to take a chance on it growing because it’s location. And he suggested something called SRS. He said, “One and done.’

Everything is so small even the benign one, but since we don’t know how long I had it or how fast it grows he doesn’t want to take a chance with it. His words, “If it wasn’t there, I would go with the chemo/Enhertu.  So we’ll zap it and hit the other two spots. One and done.”

Those are good words. What are not good words are telling your kids, as casual as possible they found two spots.

“Wait mom, am I hearing this right, you have brain cancer?”

“No, I don’t have brain cancer I have spots from my breast cancer.”

I know they hear ‘brain’ and think of their dad. I keep telling them this is different. I understand their fear.

Speaking of fear.

I have to get another MRI, a precise one because this treatment works in millimeters and the locations have to be precise. It will take fifteen minutes, I am told.

I conveyed my fears about being hit with radiation. In 1988 my dad got radiation and it caused a clot that cause a major stroke. After he stabilized from the stroke, two more treatments a clot hit his lung.

The doctor asked what area my father was treated and then assured me that not only was my area smaller and targeted, but radiation surgery and treatments have gone leaps and bounds since 1988.

I’ll hold on to that.

I won’t have the SRS treatment until after my first infusion. So there’s no urgent rush.

He asked, “Do you have any other questions?”

“Yes. Why does it look like you’re in a UFC Octagon.”

He laughed. “I am training as an MMA fighter.”

Dude, an radiologist Oncologist who likes to kick butt.

I’m all in.

An Analogy of my Health

 

I couldn’t do it. I couldn’t get my ten day break from doctors, nurses and tests. I have a video appointment with a radiologist oncologist at 8 in the morning. Cha ching more money I have to spend. Whip out that debit card and pay for the doc’s Starbucks. I’m guessing it’s about this thing near my brain or maybe even talk about radiation treatments. I am going to tell him my fear of them. I m scared of radiation. It was the catalyst that killed my father in 1988.  Things are different. I know. But still.

I told my grandson about it and his reply was, “Geez, Nennie, you’re like an old car that finally went to a shop.”

What? OMG. Dude. Perfect Analogy.

That’s what I am. When asked why I avoided doctors for so long, I always said once they found something wrong they find everything.

I am that old car. That faithful car that takes you everywhere. It makes noise, but you turn up the radio. I am the car that passes yearly inspections from a local mechanic who tells you what minimum you need fixed, tires, brakes etc.

But imagine you take me, that old car to Firestone or some dealer …

Suddenly brakes and rotors. Are the least of your concerns.

They start finding everything wrong with your faithful 12 year old car. Everything.

This, this, this and this.

That is where I am at.

Every new test, every doctor, I get some new bad car report.

Only difference is I can’t trade myself in. I have to keep fixing what is wrong and hope that it stays fixed until another part breaks down.

And I haven’t even started the repairs, the list keeps going.

Can you tell I am having a frustrating day?

I am.

The bright spot to my day was a fruit arrangement that arrived. It was colorful, tasty and unexpected from my friend Stacy.

A gift to keep my chin up when I want to look down.

Five.

I will allow myself five down days. This was one. Four to go.

Extra! Extra! Read all about it!

 

Not sure how many of you know this.

I work for a church.

I create the screens that appear during service, I run sound and cameras and livestream. I absolutely love my job there.

It is spiritually fulfilling.

Yesterday was odd, because the congregation learned about my diagnosis. It was in the bulletin, in the prayers for the people, ‘Pray for Jackie.’

Like a little newsboy standing on a corner, hollering, “Extra, extra, read all about it!”

I debated on whether I wanted in there or not, but since I am there all the time, every Sunday I would think people would start to think something was up when I go bald.

My faith in the power of prayer is so great, I want all those voices calling out in prayer, but hey don’t forget others who needs it as well..

I kept it together. Our associate pastor wrote an amazing prayer for me at the service. I wanted to thank her, but I didn’t want to get emotional. I know, I know, tears are not a sign of weakness, but a part of me feels if I can fight them, that’s emotional strength training.

So my oncologist called me today. She had the results of my MRI. She started the conversation saying she had the results, but because her specialties are brain and breast cancer, she wanted to see the scans herself.

I was like, “Oh, gees what now.’

Apparently, unrelated to my cancer, I have a BENIGN small fluid tumor called a grade 1 Meningioma. It’s the size of a peppercorn, 4mm, and not on my brain but on the Menges.  Probably has been growing for years. She is not sure what she wants to do about, so she is consulting with her radiologist. She explained that it wouldn’t be surgery, but rather some sort of target radiation surgery that uses AI to zero in on it and blast the thing. Usually one and done. I don’t understand it, and honestly, I am tired of going down a rabbit hole with Google.

My writer mind kept thinking what if it isn’t a tumor, what if it is a place that all my characters and stories live and it grew because I have so many stories.

That is my update for today, thank you for following along. I love being able to share how I’m feeling. And today, I’m just a tad anxious.

But I am telling myself, ‘Step away from Google’! Algorithms already have my Facebook feed full of breast cancer stuff and wigs.

Talk the Talk

 

I went out today with my friend, Terri. She had things on her mind for me and we visited thrift stores. She knows how much I love the pool but at this point just am not allowed out there without protection, so we went shopping for some things, then went to lunch.

It was a good day.

I listened to her bitch about things and, honestly I loved it.

I also realized today I need to stop the car cancer talk. Not for me but for my daughter. Yes, I know I hid my health from them, carrying it myself but once the truth was out, it was all I talked about. When I picked my daughter up to take her to work today, I said, “I have been dealing with drama. This morning.” When I told her it was filmmaker drama, I saw the twinkle in her eye. Almost as if she was glad to not have to hear cancer talk.

I know in my heart my daughter doesn’t care what I talk about. But for me I need to find something to take the pressure off my kids.

Speaking of pressure and Terri.

Her ex has been dealing with a cancer journey of his own. He reached out to me and really wants to be there.

I told him I was going to have an appointment with one of the oncologists in the practice to get my medical marijuana card.

Now let’s establish, even though I hung out with that crowd, I wasn’t a drug person. It never interested me. But hey why not now? Right?

Terri shows up to pick me up and as I am coming down my apartment steps she is walking up.

Whispering as if the world can hear us, she hands me this small thing and says, “Hide this in your apartment. Go now.”

It was a ‘marijuana pen’ from her ex. A gift until I get what I need. How sweet was that? What made it funny was Terri was scared having it. As if the cops would zone in on her.

I told my son about it, he was like “Be careful. I have one.”

What the heck does that mean?

It was a good day.

Over the last 24 hours a lot of friends came out of the woodwork and were there to help.

I hope they all know I appreciate it. I told them, but I hope they know I meant it.

I have one week. One week free of doctor’s appointments, test, nurses and so forth. One week before everything comes down on me. More tests. The port, and finally treatment.

From the movie, ‘Greatest showman’ and song.

I am brave, I am bruised

I am who I'm meant to be, this is me.

Until tomorrow.

 

FEELING TODAY: Strong

MUSIC: This is me

GOAL: Enjoy the week!.

Logan or Soylent?

 How did I get it so wrong?

Okay so I think I am officially traumatized over my MRI experience, but I will get to that in a minute.

Before … I am overwhelmed with the outpour of love, concern and prayers for me. I mean it. The kindest words have been given to me and more than you realize, I take them to heart. I feel them, they move me, inspire me. I have a list.

Everyone that said, ‘I am here, let me know what I can do’. I will take you up on that. Even if it is to invite you over to have tea and talk.

I saw a classmate in the grocery store, I have known her since fifth grade, the concern in her eyes was real and the embrace she gave me was loving.

I will call her.

Look, I hate to bother anyone but my children and siblings, but they are going to get tired. My daughter Allie keeps driving me everywhere. Dealing with the truths of this horrible disease. I am in it for the long haul, and she and others will need a break.

So be forewarned, if you offered, I will take you up on it. I have that list.

Back to that damn MRI.

I am pretty tough, but like I said previously, I had no idea what I was getting into.

No music? Why?

They told me because I didn’t ask.

I said, “Dude, this is my first MRI, how the hell was I to know it wasn’t automatic.”

I remember putting that mask on, then backing up into the coffin, watching the ceiling art disappear.

Ah, the ceiling art. It was made to look like I was outdoors. Why do they do that when it disappears from sight the second you get sucked into the machine.

What was the purpose of the lovely calming scenario if you can’t see it once in the machine.

At first I made the VITAL error of calling it a scene from Logan’s Run.

But how, me, the apocalypse queen could make that mistake. It wasn’t Logan’s Run it was Soylent Green with my hero Charlton Heston.

The part where elderly watching beautiful visions of the end as they are put to eternal rest.

That’s what I felt when they rolled me in the machine and when I came out.

I got a lot of advice about the next MRI and I am gonna take it.

Getting drunk before hand is probably out of the question.

Maybe I’ll try the weed.

Oh, I have an appointment with a doctor via video to get a medical marijuana card. It’s important to note, I never was a stoner. Drugs were never a thing for me. But hey at this point in my journey, why not?

I think the funniest part of this week was when I went to the oncologist and the social worker came in to discuss finances and ability to pay. She was so impressed that I found, filled out and brought the special Pennsylvania Breast Cancer insurance forms. But she looked at my daughter and told her to ‘Google’ things, because people our age, she said aren’t good with technology. She was cute, I let her go on about elderly and tech, and didn’t tell her people come to me for answers.

Wow. Longer blog than I expected.

Today was a good day. No doctors, no tests, just a normal day. Every day is a day with worrying. What will come next. Today was not that day.

What a gift.

I thank God for the strength and peace.

Tests, Tests, and more Tests

Enhertu.

Look it up. That is what they are aiming for to treat this disease. As long as my echocardiogram comes back good.

Since May 30, my hospital admittance, I have had like two days when I didn’t have to get up early and leave, go to work, or deal with medical.

I am now looking at a stretch of medical freedom. Next appointment June 30th.

I am scared to be tired, scared to say I am tired because it makes people worry. But this is exhausting and I have so much left to come.

I am going to start adding videos to this blog. Maybe when I head into procedures. I know, I know, I have said this before. I mean it though.

I have done a lot of research on this treatment and while the nurses and doctor were confident I won’t lose my hair, it’s gonna happen. Most women do or go 50% bald. 50%? Who wants to have missing patches of hair.

I’ll buzz it and wear a hat or wig.

I’m too old to worry about how I look.

Plus, I have seen Threads and The Day after too many times to want to look like a nuclear war survivor.

Today was my brain MRI. I really, really didn’t want one, especially after Ron (My kids dad) but my oncologist was like, “This is not an option’. Apparently my HER 2 disease often drops some mets on the brain. Great.

She said no worries it will all the same genetic make up that’s in my breast. The treatment will target it.

First ever MRI. No one told me about them. I am typically not a high anxiety person, but this made me crazy. No music, just a loud bunch of noises for twenty minutes, Click-click-bang-bang-buzz. Then another ten minutes with contrast.

If you ever have seen The Strain, I felt like Gus’ mother when she turned. When he put the helmet on his mother.  Then it was like they were rolling me into a coffin. My writer mind kept thinking, what if this is all an illusion and I am in a coffin or being cremated.

Side note. It’s time to watch The Strain again for the eighth time.

If I have to get another MRI, there’s gonna have to be another way. That was horrible.

I really hope my heart is okay. I want to do this treatment. It’s so promising., I have high blood pressure, so suffice to say I am nervous. But that echo comes on the 30^th.

On the good news front, I have been very creative lately.

I finished the ten book compilation which I hope to be out tomorrow, and I wrote a demented children’s book.

These past couple months of worrying, health issues, waiting for appointments have slowed my writing process and as I said, that in turn slowed my income to almost a halt.

A Go Fund me is out of the question. I can work for it. I’d rather earn it. That’s the reason for the compilation. The Children’s book will be a special link. It will be free and if you want you can do the ‘Buy me a Coffee’ thing, if not, I’m cool with giving it for free.

I am so looking forward to the week free of doctors and nurses. I am watching 3 of my grandkids tomorrow. I know, everyone says not to, my friends with best intentions, but I want to.

The ones I am watching can get their own drinks and soon enough, when I start treatment, I will be tired Nennie.

No, wait.

I’m gonna defy the odds. Mind over matter.

I won’t let this bring me down. Yeah, of course, there will be effects that are not fun, but many people push through and keep working, keep going.

I will.

 

FEELING TODAY: I’m alright

MUSIC: Fix you (Cover) Boyce Avenue

GOAL: Write. Name my newest book.