If it's not one thing

 

As you can tell no glam day. Violet went to a friend’s after school especially since finding out my Ramen Now machine didn’t show up.

Jokes on her, it showed up this weekend. But I did try it and make it. The teens are gonna love it, me, I think it takes as long as making it on the stove.

I’ll let her have a go at it after school.

Special shout out to Pam for the super fun socks she gave me. I am so excited to wear them to treatment.

Speaking of which ….

Friday late afternoon I get a call from my doctor, that CT scan I had three weeks earlier to check for Pneumonitis the results came back. Pneumonitis is a worrisome thing that can happen with this treatment.

Since we didn’t hear anything, we assumed everything was good. The scan showed very early signs of it. Now they haven’t given me anything for it except instructions to call if I get a worsening cough, shortness of breath, and or fever. Until then they’re gonna let the pulmonary doctor decide whether we pause treatment until it clears up, lower the dose or keep going. I see her in a week.

I don’t want to pause this treatment. As sick as it makes me, I know it is working.

I have to put my faith in God that He will guide me to what’s best.

But I do have to let my care team know I developed a cold. I felt out of sorts today and when I got home and rested after church, took a nap, I woke up feeling like a sinus infection has set in.

Great. What’s normal for everyone else, I have to call a doctor about.

I will not be a happy camper if this lands me in the hospital. From what I see on the support group I am in, they are quick to throw you in a hospital bed.

So if you think about it, can you toss prayer my way?

On a brighter note, this is day 6. Usually my appetite is gone and I am feeling nauseous. Today I am keeping it at bay and even eating.

Feed a cold, starve a fever. I don’t have a fever.

I’d rather eat with a cold, then feel pathetic with nausea.

I’ll keep you updated.

Glam Tram and Impulses

 

I tried. I tried to be a ray of sunshine yesterday at treatment. My cool Wonder Woman socks, complete with cape made everyone smile. I am now in a crazy sock contest with the one aide, so I have to step up my game and really get crazy. If you see any, send me a link.

I should have known it was gonna be a long day. The waiting room was packed and they didn’t call me back for my 9 am bloodwork until 930, then I sat and waited another twenty minutes for the draw. My clinical exam was on time, but I didn’t go back to be hooked up until 11 and then treatment didn’t start until noon.

Why? There’s no chemo on Labor Day so they were double booked. It was crazy, but my mood stayed good until they told me my magnesium was low and they had to add an hour to my time to get a bag of magnesium. I didn’t want the treatment and it took my Physician’s assistant and navigator nurse to tag team me on why I did need it. Okay, okay, I got it. Suffice to say, I didn’t get home until almost five pm.

My nap was a good one. I didn’t get one there. My son was with me and I was enjoying his company, plus I was talking to so many people.

I was okay until that mag bag and then I just wanted to go home. I have to get this magnesium up. My doctor said no supplements so I have to do it all with food. Putting on a big pot of collards tomorrow.

Anyhow, I get my scans in a month and we’ll be able to see internally how the treatment is going. Externally the palpable lumps have shrunk and I had a routine CT scan to check for inflammation from the treatment. It looked good, showed the lymph nodes in my sternum had gone down and the effects of smoking are reversing.

Tomorrow my granddaughter is gonna glam me up, so be ready. She asked if she could, She’s 16 and said total transformation, so who knows what that means. There will be pictures.

Oh, yeah, one more thing. That Glam up request came after I asked her if she’d make a product video for me. If you were wondering why that picture is there, I had an impulse buy after seeing it on facebook. I shouldn’t have. Money is so tight, but I treated myself with easy payments. It arrives tomorrow, the Ramen Now. And when I uploaded a video review to their site, they send a link to get a case of ramen from around the world free.

I asked Violet to do the video and in exchange I get a glam. Whatever that means.

Peachy Keen

 

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

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

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

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

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

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

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

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

Green is a good day.

Yellow means I had issues but rolled with it.

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

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

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

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

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

I will keep everyone posted.

Infuriated is an Understatement

 

If you saw my FB post today I am livid.

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

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

Get rid of it.

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

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

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

 

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

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

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

Rough Week

 

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

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

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

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

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

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

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

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

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

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

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

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

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

Wigging Out

 It started with a Google search. Actually, it started with a text from a friend telling me about the wig salon. Then I googled because I swore they were appointment only.

I reached out to ask what the price range was because I didn’t want to waste their time. They were affordable, within range enough where I would have to break out a credit card, but then the owner sent me to Hair Peace Charities and with only a few questions, they sent the shop money for a wig. All I had to do was pick one out.

My daughter and I went there. They had a lot of wigs, I tried a bunch on, but the one I got just screamed at me.

“Hey, this is the same wig that the woman at chemo has!”

Same wig, different color. I admire that wig every time I see her, the woman was always made up and looking fabulous.

I always told my other daughter I couldn’t afford that wig. I knew it was a wig not because it looked wiggy but because, hey we’re in chemo. Just a guess.

There it was. On my head.

It looked so natural on the forehead but it was too long for me. My daughter whipped out a picture of me with longer bobbed hair and the shop owner fixed it.

If you didn’t see it on my Facebook post, here it is.

My son called to tell me he thought I posted a picture from 2003.

Now in the picture it looks really good. In person I think it has a hint of wiggy, but enough for people to know. To care?

I don’t plan on wearing it all the time. Only if I go out somewhere or an event. I want it to last. But it really isn’t a matter of just putting it on. It needs adjusted and played with.

First I have to get used to it. I read a bunch of tips that I need to start at home, learn how to make it look good then gradually go out.

I won’t wear it to chemo, no need there.

It really is a vanity thing, one I never thought would happen to me.

I know I am gonna feel like people are staring, just like I feel like they stare now when I go out with one of my caps. It took me a while to get used to wearing caps, so I’ll get used to this.

The owner of the shop even gave me a headband to wear under my ball cap wig so it doesn’t itch for the days I want to just throw and go.

I think the wig looks good, enough where I look like my old self and not the poster child for sickness.

But even with my baldness, patches of buzzed fuzz hair poking up here and there, all of this is part of my combat uniform and I am in a battle.

A Man Named Gene

 Not sure how long this post will be. But I wanted to share how my weekend has been going. Last you heard, I was pretty miserable. Physically. Yesterday (Saturday) I started feeling better from the mild flu like symptoms and decided, you know what? Sunday is Day 6, the start to my sick days, so I am making the best of the day. Pastor Matt gave me Sunday off, Saturday I went to the church and prepped the sound booth for my substitute. Then knowing Aiden, my oldest grandson needed a haircut for school and I need a protein packed Starbucks. I picked him up.

Look I am going to be honest, since being bald and wearing a cap, I don’t like going in any place where people know me Including Starbucks. I’ll go to another one, not my regular. I figured Aiden was with me, I’ll just send him in to pick it up.

I sent him a text and this was his response. How sweet is he.

Off we went, forgetting … that not only do I suffer from bald headed social anxiety now but my grandson suffers from severe social awkwardness.

What a pair. We pull into Starbucks and he says he would go in with me. UG. I took a deep breath and told him ‘I got this’, ran in and got my drink from the counter.

I got in the car. Proud of myself for braving the store. Took a sip, it didn’t taste right.

Damn Chemo taste.

“Who’s Gene?” he asked.

That’s when I realized I grabbed the wrong drink. Which wouldn’t have been a big deal but Aiden thought it was the most hysterical thing that poor Gene is probably in Starbucks looking for his drink and was pissed at me. I wasn’t going back in so I went through the drive thru. He went on and on about this guy Gene and how I took his drink.

Okay it was funny and you had to be there.

It was a good day. Today, day 6, I am being proactive. I took my anti nausea meds this morning and then a full dose eight hours later. So far, so good. I guess it helps now that I am taking the right amount. I found out I should have been taking 8mg not 4. I am hoping it makes a difference.

Fingers crossed that CT scan comes back good tomorrow.

A lesser Day

 It’s been a few days, I know.

I had that CT which I have no idea how that went because results aren’t in. They’re looking for inflammation of the lungs because this treatment can cause it. I'm thinking positively because if I had that condition, they would have been spotted. Who know.

But surprising me was the bone treatment that they added to my chemo. I thought I’d skate through those ‘flu like symptoms’, but last night I started to feel it and then today, I felt like I got hit by a truck. Delayed symptoms, but it only lasted half a day. Nothing compared to nausea.

I wanted to go to the pool today and even tried, but I don’t know if it was anxiety or me just immediately feeling bad there, but it didn’t work out. I stayed like twenty minutes.

Today was not a good mental day and I rarely have bad ones. I'll allow myself this one. Just getting inside my own head as a writer. I am writing but the truth is, I am not publishing, which means I am not making money. I make some, not a lot. The new releases keep me relevant and keep me above water.

But the truth is, even if I were publishing like I was, I wouldn’t have this special insurance; there are income guidelines for it. Even though they are higher than state guidelines, it’s not much higher and it’s still low by standards.

Problem is when I had regular insurance, I was paying so much out of pocket that any extra income was going to those bills.

I’ll figure it out. I know I need this special insurance and I am grateful for it.

Just a sad state we live in that when you’re sick, you’re poor either way. Either from not having income so you can qualify for special insurance or paying out of pocket.

A catch 22.

I’m probably in this mental state because it’s supposed to be a green day. I color code my symptoms/days spread sheet and this day, both cycles were green (Good) but today was a yellow day. At least it's not a red day.

Tomorrow will be a better day and our new pastor told me to take Sunday off this week to rest. I spent tonight focusing on my church work and updating the website. Which actually helped.

Focus on something else other than feeling bad.

48 Hour Film Project can’t come fast enough. It’s in a few weeks.

I’m guessing the ups and downs are normal, I just usually don’t have mental down days. I’ll turn it around. I’m almost finished with this new book and then I am off to Beginnings where I will be in my happy place!

Updates and News

 

This is sort of long, but a catch up and I hope worth reading for you.

I don’t know what caused the mindset change,  I have been a pretty positive person about this disease and outcome. Maybe not the symptoms or the out of control testing and locations …. But today, I went in differently.

It all started with Elvis socks my grandson got me to wear to chemo. On Sunday I decided if I were wearing the socks then I would show, then I just added to the outfit. You know what? I’m not normal, let’s do this up bright and out there. I thought. I called my son, Noah for eccentric help.

The outfit changed my whole attitude. People looked at me wondering if I just didn’t have a fashion sense or maybe not all there.

I didn’t want to be like the other women in the waiting room. Sad and quiet, looking lost or looking for a fight. Which apparently a fight broke out over Price is Right while I was getting examined.

Positive and bright like my outfit. Not to mention my naked Sam and Dean Supernatural Pillow.

Although taking a view inhales of my Medical Marijuana probably didn’t hurt my positive attitude. The nurses and aides all commented on my outfit with a smile, saying, ‘look at you.  All fancy today.’

My friend Mike is going through Chemo and he posted a pic of him watching TV from the chemo cubical. I was bound and determined to find it. I did. Food Network was my choice.

My daughter Allie was with me, I know she thought I was extra. Telling me to talk quieter about the chefs on Food Network and she asked me , “Mom were you singing Elvis with a nurse’s aide in the back?”

“I was.”

“Okay, that’s what I thought. When the fight broke out the nurse said she was going back to the happy patient and singing Elvis again. I wondered if that was you.”

Who else. I made people smile and laugh today. That made me happy.

The positive grew. While my weight was down, so was my blood pressure … it was normal.

I saw my oncologist, sweet little thing that looks at me as if she just is trying to understand me. She was truly worried and wanted to help with the symptoms.

She knew I was concerned about adding that bone medicine and confident I could handle it. I told her ‘Fine, I got that brain surgery you guilted me into.’

Then she got the brightest smile, grabbed my hand and said, “And I am so, so happy you did that. It was the right thing to do. Now … for your severe symptoms….are you still drinking?”

“No. Yes. But micro sips and not like I was. I’m no longer a Hemingway functioning alcoholic.”

That made her pause. She said she wants to put me on a pill to take at night, three days before the bad week and all the way through. I was like, ‘wait, isn’t this a med that they prescribe as an antipsychotic?’

“Yes,” she replied. “But it’s a very low dose. A quarter of what is usually prescribed.”

“I’m a writer, I’m afraid it will mess with my brain.”

“I highly doubt it will quell any thoughts that go on in your brain.’

Meaning?….. Fine. Give the subscription.

Then she told me. She doesn’t want to lessen the dose because of symptoms. Not yet.

Why? Sharing time for all of you following.

My tumor markers went down between the first and second treatment.

Upon physical examination, my underarm lymph nodes are much smaller, the swelling in my arm has decreased drastically, and the tumor in my breast is significantly smaller.

“The cancer,” she said. “Is dying off and retreating causing the shrinkage and healing. We are on the right path, a steady trajectory to what we want to see.”

Well, hell, side effects be damned, if this is working, I’ll deal. I went into the chemo room with a renewed fight. I’m fighting this bad boy. I named my breast tumor Negan. Because  Negan will eventually get defeated.

Now, of course, they took blood today and I am worried that my markers will go back up. She said the physical tests say a lot. I’ll hold on to that and have a deep convo with God tonight about keeping this path going. If you have a little prayer list, I’d appreciate the name drop on it.

As for next treatment, I’m thinking Ace Ventura.

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.

Day Six Strikes Again

I know I have been absent this weekend. Just didn’t want to bore you with mundane stuff.

Did the transfusion work? Hard to say. I was still sick last night, Day Six in the evening, same as last cycle. Not as sick as I was last time. And I did pretty good today, again, until this evening. Now I am tired, not hungry but am gonna try to force myself to eat something. I did have broth today and some egg custard (Thanks to Nancy from church).

I am charging my medical marijuana pen. I don’t utilize it enough, but I think I’ll try it tonight to build an appetite.

Maybe some toast with apple butter.

Honestly, more than nausea it’s just tiredness. I don’t want to do anything.

Last night, I sat with my phone and wrote so that was something.

I have three appointment all on Wednesday. MRI, radiologist, then PT. The first two are across the river on the far side of town, the PT is close to home.

I just hate having to go into town. It’s a long drive during rush hour and I have to find someone to take me because I’m not supposed to drive too far on my medication. Which means I have to inconvenience someone to drive me.

Trying to do that now, have maybe my son drop me off and my daughter come and get me.

Really, I wish I didn’t have to do this.

It means getting up at six in the morning when I am already so tired. I just keep telling myself it’s only a few days out of three weeks and I have to endure this because it’s working.

I did however look at my chemo schedule and saw 48 Hour Film Fest is the weekend before a treatment. Meaning that should be a ‘feel good’ weekend, so I signed up. Those of you who know me, know I do it every year, so I am gonna do this.

Those of you who don’t know what that is. It’s where you go on a Friday, get your genre, required elements and make a short film, turning it in within 48 hours.

Should be fun.

Fun.

Fun for me would be eating a giant dish of pasta without worry of getting sick.

Okay I’m complaining. Just know it’s more so about these appointments this week.

Most of the time, in the day I feel good. I haven’ missed work at the church.

I am grateful that God has me. And just so you know, every time someone tells me they’re praying for me, it means a lot.

So I am going to end this boring update.

Just wanted to keep you all in the loop!

Hydration Infusion

 

I am so glad I kept track of everything that first cycle. It’s a spreadsheet. I look at each day last cycle to see how I felt, what to avoid eating.

It’s been a challenge to change my eating habits. But I am trying. Small meals frequently. I’ve been snacking a lot, healthy snacks. But the dreaded ‘sick’ days are coming.

I did get some new stuff from the Medical Marijuana store, a tincture.

So far, I feel I am one step ahead of this game. Last time I recall even blogging that I was exhausted on this day (Day four).

Maybe it was the hydration infusion I had today. I don’t know. I am not exhausted, but I’ll take it one day at a time.

I went to a local infusion center instead of going all the way into town. It was weird. Not as comfy as the Woman’s Hospital, and the chairs didn’t recline. How do you have an infusion center without reclining chairs.

No one was permitted back there with me either.

Oh, well, not sure I will do that again unless it makes that big of a difference in my chart of symptoms.

Not much happening …. Have to go get the ‘good’ MRI next week, which still irritates me that I have to do this again.

As I said before, if I had regular insurance it would not be approved.

Short blog tonight, just wanted to update you and let you know I am still here fighting and grateful for all of you!

Bam Bam and the Amazon Truck

 

Funny thing happened … and I’ll get to it in a minute.

Had a good day. Although last night I couldn’t sleep. I am pretty sure it was the steroids they pumped into me. But I was fine with it. It was actually nice not to be tired.

My son and Daughter in law covered for me at the church and VBS.

Special shout out to Margaret L for the wonderful gift box she sent me. It was amazing.

Okay onward., So, like my book, Heaven Shall Fall has been out for a while, and I included it in my recent compilation and forgot there was a note at the end saying that there was an original version that I completely changed, and if anyone wanted a copy reach out. No one ever has.

Not gonna lie, since I haven’t had any self published new releases money has been tight. Especially since my savings took a hit before I got that cool new medical coverage. I was never rich to begin with but this …eh, I’ll get through it. I have bigger things to worry about.

I want to rely on my gifts to make a living. I hope during this all I don’t become irrelevant and no one wants to read me anymore.

Trying to think of ways to utilize my backlog, asking God to show me a way. I get two, not one, two emails yesterday asking for the original version of Heaven Shall Fall.

I go into my archives of files pre 2003. And there it is.

Then it hit me. What if I put together a compilation of my pre 2000 works that I totally rewrote.

Just until this new release comes out next month. It may or may not work, but people may be interested.

While looking through those files, I found books I never published, and my very first manuscript written when I was 14. ‘They will Destroy Us.’ I had scanned it back in 2007. It’s horrendous, and typed up on different types of paper thrown in a notebook.

2007 was the scan date, heck that was before anyone on Kindle was even writing apocalypse fiction.

So I am gonna see what I can do. Just need to figure out if I put it on Amazon or another site for people to get. Maybe the older books will inspire people to look into my backlog. Or be curious and say, ‘Hey I liked this book, what was different?’

Um, swearing and sex in the older versions. Boy did I clean up.

I spent this afternoon starting it. And am resolved to finish my humorous autobiography about  what shaped my writing. I will not include the cancer in there. The book is already half finished. I always occasionally write a chapter. But I think I’ll finish it.

I will get back on track. Just life, you know, throws a curveball and you got to figure out how to hit it out of the park eventually.

Update on my head, I am still losing hair, I expect to be a shiny bald head here soon. I am thinking of going to get temporary tattoos, I’m thinking Bam Bam Bigalow style.

Anyhow last, the funny thing that happened today.

I went to get my daughter today for a coffee run and pick up the Walmart order. I always pull straight into her driveway, then back up, swinging to my left into the parking pad then turn to pull straight out.

It’s an everyday thing. Today different. She gets in. I reverse, BAM. Good thing I was driving slow.

I stopped on impact. I said out loud, “What did I hit?” Thinking my son in law left something in the driveway. I look in the mirror, all I see is blue.  it’s an amazon truck.

Apparently he stealthy pulled in the parking pad and I never saw him.

In my defense neither did my daughter.

The driver was in the doorway, thankfully I didn’t hit him. No damage to either vehicle.

I got out of the car and told him, “Sorry, Chemo brain.”

He laughed and said no worries I am not filing a report over this.

We all had a good laugh.

At Starbucks a UPS truck was behind me as I was backing up, I did not hit him.

Second Round - 6 more until Avengers

 

Short blog. Just wanted to update you.

Day one, infusion number two. It went smoother and I wasn’t there nearly as long. It went from 90 minutes for Enhertu to 30 minutes. I still had 30 minutes premeds and another 30 of another chemo therapy before Enhertu. I wasn’t as exhausting as the first time when I was there for 6 hours.

I feel good, not tired today. Although I did take a 90 minute nap.

For some reason I had this nervous excitement. It was so prevalent my oncologist even stated I wasn’t my normal calm self. I told her about it.

She told me from my notes and what I told her, that I am doing well.

Although both her and my physician assistant commented on how my ‘wound’ was looking so much better and the swelling under my arm (Lymph nodes) had reduced.

All encouraging.

Bring on the next hit, let’s take this baby down a few more notches.

My chemo nurse said I have a good head for the bald look and told me from what she has seen, this treatment of Chemo is different with hair loss. It’s like the shock of it causes the loss but it grows back fast. She told me not to be surprised.

I hope the diary I kept helps me get through this round easier, plus I have hydration scheduled for Friday.

According to my diary, today through Friday afternoon food tastes normal and nothing bothered me. I am planning accordingly for the rest of the week.

So we’ll see.

I did however finish (Thank goodness) Sweet Magnolias. Season four was torture, like paying a punishment I didn’t deserve. Season five was better. I still skipped over the mushy stuff.

For some reason it went into The Resident. Now that is a good show.

Off to write a little then relax.

Thanks for reading!

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.