The Kindness of Many

I wanted to write a blog of appreciation and let’s start with that. I was talking to my daughter about the kindness of others during this time and said to her, “I want to do a blog about things people can do for those who live alone and going through chemo.” Then I thought I don’t want anyone to think this is a shout out for people to do this for me. I just think the unique things people have done have made a difference. As I started the list I was floored by it all, so if you know someone, please be inspired by what so many have done for me.

Here’s the list I compiled.

Homemade pudding and custard that hit the spot when nothing else did.

Soups and casseroles in the freezer, single serving take out and heat.

Mac n cheese that feeds me and my grandson for days

An adult beverage that is needed when no one else was brave enough to bring me one.

Taking out my garbage when you pop by.

Uncluttering the chemo mess in the kitchen.

A visit and talk.

Shaving my head even though it was just as hard for you.

Random texts asking how I am.

Fixing something that maintenance keeps screwing up.

Praying for me. This means so much.

Not being afraid to walk up to me and ask how I am. You’d be amazed how many people that know me are uncomfortable with me (That’s okay)

Doing my floors for me every Sunday before Chemo

Making me hats and/or sending them. Trust me I know who made and sent each one and I think of you and thank you as I put it on.

Blankets! I use everyone I get! I feel your warmth.

The cards, the cards that come with words of hope and prayer.

The hard candy that relieves nausea

The messages that are so encouraging for strength.

Not giving up on me.

Caring, genuinely caring.

It’s a huge list but one that I wanted to share because everyone has really made a difference in this journey that is far from over. The kindness of others keeps me going and has been amazing for my mental health. Thank you.

Life's Little Encouragments

The most exciting feeling happened when I typed the words The End yesterday. I finished a book. Now I know, that’s nothing new for me but this time it was a milestone. Before my diagnosis, when waiting for my appointments, my mind and heart were full and focusing was hard. But I did what I could and finished my projects for my publisher.

In April I started a book and stopped. May I started another. This time whittling through and then came the diagnosis and my life turned upside down. Hospitals, doctors, tests, treatment that crushed my body and more times than I would admit or show, my spirit.

Through it all I did not spend one day in bed. I got up and showered and went out somewhere. I continued my work at the church. But writing was hard. My left hand sucked with neuropathy and swelling from lymphedema. Physically and mentally I worried I’d never be the writer I was.

Slowly with treatment my arm swelling started to go and over the last couple treatments I regained control of my hand again. I woke up and looked at the calendar and decided I was taking my life back. I spent enough time letting cancer live in my head and body, my head and mind was mine.

The week of 48 Hours film fest, I decided even if sick, I would be me. Sure I’d take it easy if need be. And I did the festival. Then I went to my vault. I found a screenplay and decided it would make a good book. It was the motivation I needed. I finished the book in 4 weeks and it felt amazing. My kickstarter was a success and I got the cover and secured an editor. To top it off the scans were good. Still waiting to speak to my doctor but the results were so promising it pushed me even more. I will finish the other book but I am going to Beginnings. That series is me. Sorry for the long blog. I plan on a Facebook live Q and A during chemo for my new releases that come out on Tuesday and to let you see what it’s like. Fingers crossed the oncologist confirms the results I read on the scans.

I hope if you can, you'll join me Tuesday. It will be on my main FB page and I am thinking 12:30 EST. Hard to pinpoint a time when you go in there.

What Tomorrow Brings

 The title of this blog is actually a title of one of my books. But it fits. I am so excited about this hat my daughter made for me (Finally) I hope to have a collection of them, but I’ll have hair by the time I wait for her to make another one. One of my readers on FB said they’d make me one. I am super excited. I think this works for me.

I do have that great wig and I wore it our the other day. It didn’t feel right and felt like it was just resting on my head like a helmet. It seemed to be puffing out more than photos I posted. Despite combing it and using the taming spray. Then I realized, ‘the band’. I was wearing a band to keep it in place better, and my head is so small, that it made it kind of (For lack of a better word) Levitate from my head. Today I put it on without the band, and while I need to be careful of slippage, it looked so much better and felt better. EXCEPT … it is too shiny when I am out in the sun. I saw my reflection and it was just shimmering. I washed it with baby shampoo today, I saw on line to do that. It is still wet but already looks better.

I’m excited for my birthday coming up. On Saturday, Terri and I are going to my all time favorite place to eat, Mitchell’s. Because this is my I AM month,  Saturday for dinner I am going to be confident. I am going to be wearing make up and something other than a tee shirt and jeans. I am … excited to do that.

My daughter reminded me the other day that I have worn wigs in the past. IN particularly last Mother’s Day when I dressed incognito to meet my son. Sort of a pay back. See Pics. I played the part the wig made me feel, and she told me if I feel uncomfortable play the part of my wig.

It will be Moira! Enough said.

IAM … also confident that I am not losing weight this cycle. This bad week (Knock on wood) has not been so bad and I have not lost my appetite. My friend Jack brought me some awesome mac and cheese, Paul from church brought soup. Oh, and Jack also brought me some amazing pickle moonshine. It did take my daughter to say to me, “Whoa Ma, not a whole shot. It’s 200 proof” Thanks, Jack, I can’t wait to tackle that pickle in there.

Tomorrow well, what does tomorrow bring … scan day. Am I nervous? More than I care to admit. But I am putting all faith in God that he has this and has a plan. But if you think of me around 11 am EST send some good vibes and prayers my way.

And that’s all. Hope everyone is have a great week.

Svanxiety

 A friend reached out today to check on me because I haven’t been posting much on Facebook. She was the second person in two days to do that. Then I realized, wow I haven’t. Not because something is wrong but because as a writer, I just don’t want to bore you with the same information.

Oh, no, I am nauseous.

Wow, I feel great.

Damn it I am so hungry!

Those sort of things.

I’ve been dealing with treatment and wondering though, am I getting used to the nausea or is it getting better?

I probably am just building up a tolerance.

I’m still freaking bald, well, I have peach fuzz that’s white. I asked my daughter do I have a scalp condition or is that white peach fuzz.

She said it’s very white peach fuzz.

Hey if it grows in enough to cover my head I’ll take it.

In the meantime I have been practicing my wig wearing for the cooler temperatures.

I do get my scans on Friday and I am nervous. They call it scanxiety for a reason. It causes anxiety. I want badly for the scans to be stable or reduced but a part of me is scared. I have to keep my faith in God and all those praying for me.

One thing positive …. Which is another reason I haven’t been on much. I have been writing. The new book is almost done. I stopped writing the one that was slacking and dragging and moved to one that motivates me to finish. Plus, once I finish, I can get back to my Beginnings Series.

If I don’t write … I get bored so easily. I realized that tonight. Not feeling well enough to cook, which I always loved to do and not quite able to focus enough to work.

I’ll get there tonight and write some more. It’s been so helpful mentally.

One thing I am going to do, that I never did before, is I am going to do a kickstarter. A small one to do the cover for the new book. Being that I have had very little income, paying for a professional cover hard. I’ll do it, but I am hoping my kickstarter will work.

Hey, if Clive Barker can ask for 1.5 million, I can see if I can get $500. If it works, great, if not, the book will still come out.

Another goal for myself that I need.

I appreciate everyone worrying about me.

I am glad I have that and the prayers!

Cylce 5 - Day 1 - Thinness

 I think, or one would think I would have this down pat. I slept in today, not sure why I thought I could wake up up 7:45. Maybe I was thinking about working church. Anyhow, made it on time.

I looked mighty fancy and made a lot of people smile! Treatment went well, fast and easy.

This is me getting into my daughters car lol

Allie wasn't ready for they way I was dressed!

I was watching Food Network and got so caught up, I yelled out, “Jet, come on!” (Jet Tila)

My nurse, Jen thought I was yelling for her and hurried to me. I have to be more careful. Apparently no one watches the TVs

It went well. My weight dropped again. Down to 106. My oncologist isn’t concerned because she said my body is using all the energy to fight so I am burning calories.

I made the decision. Since I did that editing project, I was going to try something. There is a gourmet high calorie meal service that does gourmet puree delivery. It’s not expensive, same price as a doordash meal that I’ll never finish.

Now, I am positive that they won’t be good. But my problem seems to be on Days 6-12, I don’t eat because after 3 bites, I’m full or nauseous.

Unless it’s an applesauce cup or yogurt then I can eat the whole thing. But that’s not a lot of calories.

These meals aren’t much bigger than an applesauce cup and average 500 calories.

It's worth a shot. Hey, if I can finish 4 ounces of applesauce surely I can finish 4 ounces of pureed chicken parm. And they are designed for people who have digestive issues and or on Chemo, too. It won’t be the only thing I eat. The catch line is food is medicine.

For now I am taking advantage that while hopped up on steroids and other pre-chemo meds, I am going to eat!

I would like to add this. If I could feel this way every day, I would be so much better. Why can’t I get the same pre-meds during this cycle say Day 7?

Updating finally, right?

 

Long time no blog, right?

It’s been busy and well, of course, I was getting over the bronchitis. Feeling so much better. I wish I had more strength, I just wear out so easily.

A friend and reader Bobbi, told me not to overdo it.

Guess what?

I did. It’s okay. I need to start feeling normal again. I work at the church and writing like a mad woman felt good and this weekend I did the 48 hour film fest. I was back to doing what I love. Filmmaking and creating.

Make a movie in 48 hours starting Friday night with  writing it and then filming on Saturday.

Did I look awesome. Heck no. I rocked the bald and baseball cap and baggy comfy clothes. I actually looked like my grandfather.

That’s not an exaggeration. My friend Matt, took pictures and asked if he could post them. I told sure. I thought he was so sweet, but you know what. As unattractive as I am right now, this is what cancer looks like you're you aren't letting it win.

I had a ton of help tho so I wasn’t carrying it alone, but still it was a lot but I am proud that I did it. Man, my filmmaker buddies are the best.

My daughter said the good thing was all of us on the team are older so we’ll want to get done to take a nap.

 I had the energy mentally but physically, I guess being a chemo lazy lump for months didn’t help. My legs were sore yesterday and I still had church work to do as well.

The shoot was fun and it went so well.

I went to work today and  now as I write this,  I am so tired. I had a late lunch and devoured a cheeseburger. Not sure I can eat right now. I just feel blah. I know most of that is from doing too much.

So I am going to take tonight, rest and relax, tomorrow I will get back on the writing horse plus I took on a freelance editing project to make some extra money.

Then, well, we all know what Tuesday is.

We start again.

Until Next blog!

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?