It feels like I’m drowning

This year can’t end soon enough. I can’t get rid of Curie soon enough. I can’t end chemo soon enough. I can’t stop these monthly oncology check-ins soon enough. I can’t stop having MRIs soon enough. I can’t stop having seizures and the neurologist can’t stop playing with my medication. When is enough, enough? No one has an answer for that. I’m drowning in bills, medical bills, medication bills, and bills on top of bills, just when I was getting on top of things, this tumor came in like a literal wrecking ball. Curie’s bill came in and I was like WHOOA take her back. No one asked for that $3,584.45 bill.

The only thing keeping me going through this week of chemo is my birthday celebration on Sunday.

I can’t believe I’ll be 36 on Monday.

I’m drowning in writing this blog. Trying to keep everyone updated on my health, and it’s draining what little energy I have after work. I started this entry at the beginning of the month, knowing that it would be my last one for a while. I have used this as an outlet for my emotions and to cope with how I am doing and handling life with cancer, but I just can not do it anymore. It’s becoming a chore trying to keep it up. I want to, I need to find another way, I need to find others that I can relate to that are dealing with and living with cancer the same way I am. Trying to go on about their days like it is just another normal day, but it is no longer normal it will never be normal again. I made myself believe it would be normal last time, and it was normal — after I got better and stopped having my seizures I lived for 6 normal years. I won’t ever be normal again.

So I’m going to find cancer groups that I can join and hopefully get through this year, and find the support I need to live the rest of my life with cancer because even if I do beat it again, go into remission. It will always be a part of me.

Mental Health Matters
I Matter
This month is Brain Cancer Awareness Month

all donations go directly to my medical bills
https://www.gofundme.com/f/spectacularslicer
Venmo: sliceslicebaby182
Cashapp: $slicearita

Drum Roll… Introducing Curie

That’s what I’ve named my Optune device. (It’s a reference to a character in Fallout4)

I’ve struggled with writing this blog update, not because I don’t have the words to write, but because of the energy exhausted from dealing with Curie on a daily bases. I do not know how I will handle 6 months of this.. well 5 months now.

I sleep, eat, and half shower with her — she is electric so I detach from her main body and coil up the wires and wear a shower cap. I have it always on for nearly 24 hours, it is recommended to be worn for 18 hrs but if the arrays are on there already why not just keep them on and carry the bag around. The arrays get changed out every 2/3 days on ‘A’ days and every 3/4 days on ‘B’ days. The preference on the length of each day is the matter of ‘A’ days being down further on my forehead and that is just annoying and gets oily since I can’t wash that part of my face. ‘B’ days I could wear forever and I have worn nearly for a week, but hair growth and all, that needs to be shaved back down to have the arrays working right.
‘A’ days and ‘B’ days have other differences too. If ‘A’ day is further on my forehead that means it is further up my head in the back, and in front of the right ear, on ‘B’ days its the opposite, further off my forehead but back down my head nearly to my neck and in front of my left ear. I have four array pads. They all alternate on ‘A’ and ‘B’ days.

The only major side effect from Curie is that at night sometimes the arrays get hot, like so hot that my head is on fire. I radiate heat on my own, my feather pillows hold the heat, so that does NOT help this situation. My husband calls me his little radiator. So I’ve never been one to sleep with a fan and now I’ve made my husband share his. I’ve also traded out my feather pillow for cooling gel pillows for the time being. I also have a small desk fan that I haven’t used in a while, that I set up on my bedside table.z

I start my next round of chemo THIS WEEK, (tonight) my 5th. I went to see my oncologist to get some blood work done chat, and schedule my next appointment and put in another MRI referral. I’ll also be away all this week but I have it down to a pretty good science now, take an antinausea pill with the rest of my medication, and then an hour after that, chemo, then go to bed. At any point after that, I’ll just take lorazepam to help keep my nausea away. Also, I’ll have the best two nurses one could ask for, my favorite god puppies. We will just cuddle the nights away, repeat for 5 days.

That is how my days go, I work from home, I sometimes walk the trail, I go to a lot of doctor’s appointments, sleep, and repeat. Pretty boring I’d say. A long way from my social butterfly days, just thinking about those I get exhausted. Good memories and good times.

I found an IG account after I bought stickers from her Etsy shop — she speaks my cancer language. (ohyouresotough)

Last week I went to visit my neurosurgeon, just so he can check on my scar, and get cleared that unless something shows up on a scan we don’t need to see each other again. So I took a selfie with this model of a brain, and hoped to not see him again.

Thank you again to all those that have donated to my gofundme account, every donation goes directly to a credit card that I have just for medical-related “purchases” visits and medications are the monthly troubles, but big purchases have been MRIs, and the surgery is already set up on a payment plan but those payments are placed on this credit card.

GoFundMe: https://www.gofundme.com/f/spectacularslicer
Venmo: sliceslicebaby182
Cashapp: $slicearita

I cry — and cancer sucks

My emotions are a roller coaster lately, even more so than a woman can be. I hear you shaking your head in agreement fellow women and I know you are snickering and probably face-palming about it fellow men that have to deal with us.

I will be feeling happy and then sadness will wash over me and sometimes I don’t cry but more times than not, big alligator tears fall. I started this blog entry back on the 11th of January. I didn’t get far. I wrote about my 2nd week of chemo, and it being my 2nd day of that round. Now it’s a week after my 3rd round of chemo, and probably the best round yet.

There isn’t much to say, I’m just trying to survive day to day. I get tired easily, not up to doing activities EVERY day, because if I do a lot one day — then I’m out for the next day maybe even two depending on how big the event was the day before. I’ve had to slow my life down tremendously and right there is my biggest problem, issue, the thing I get sad about the most and cry most often about. I miss the life I once had. I’m afraid I’ll never get back to that. The first time around the driving force behind me getting through it all, was derby. Then I was working so much with a schedule that was never the same week to week. Oh, retail life (I kinda miss it tho) then 2020 hit, and now I’m just too far away and sick again. (insert more tears) So I think it’s just time to leave Roller Derby, the Savannah Derby Devils, and Daisy SliceHer in another life.

That was hard to write. I’ve known it for a long time, and have told many people but writing it, seems so much more definite and permanent.

World Cancer Day was February 4th — didn’t know that until my longtime bestie from middle school, Amanda T. posted about it on her social media. So thank you Amanda.

I’m not dead yet, so that is why I’m posting, even tho if you are a friend on any of my socials you know that, but to those that are following/subscribed to this blog that may not know. HI, (waves) I’m still here 🙂

shout out to OHYOURESOTOUGH on Etsy for making alot stickers/keychains/magnets I’ve recently purchased to keep my spirits up. (https://www.etsy.com/search?q=ohyouresotough&ref=auto-1&as_prefix=ohyour)


gofundme: https://www.gofundme.com/f/spectacularslicer
venmo: sliceslicebaby182
cashapp: $slicearita

been 8 years of my life….

I know it’s been a while since I updated you all. My life has been full of waiting for the next doctor’s appointment to see what they want the next doctor to say and then looping back to the first one, etc. Sprinkle in a dozen or so minor seizures and that’s what my last month and a half has looked like.

I had a few changes with my medications, increase, decrease, change this one stay on that one. That made my body go into overdrive mode. I had 7 seizures in the month of November. All were very minor and lasted less than 30 seconds. Still scary but they could be worse and have been way worse before. So far in December I’ve had 4.

I saw my Neurosurgeon on the 14th of November and he gave me the clear. His job was done. So onto my Oncologist, Radiologist, and Neurologist to see what they all have to say, I also roped in another Oncologist virtually, from Peidmont in Altanta.

I’ve been having my visits with my Neurologist virtually but at the end of the month I go in person for them to do blood work and just see how physically I’m doing,.

I had an MRI on December 2nd but wouldn’t find out the results until the following week when I met with the Dr.

He found that there is still a reoccurrence. No surprise, I mean it’s a brain they can’t get it ALL out. I wouldn’t be me, I would just be a shell of myself.

I don’t recall when I met with the Dr. from Peidmont but she was telling me that for having this kind of tumor I’m in the best shape to have medication that is proven to work. There were not any clinical trials that would do me better than the course of action she and the rest of my medical team wants to take.
I met with her before I had the follow-up with my Radiologist to go over my MRI and she recommended that I take chemo to start and she would send a note over to my Onogolsist, she said she would note to my Radiologist the same thing.

So when I met with my Radiologist he agreed that I would start with chemo only, instead of doing both chemo and radiation, like I did last time. We are not taking radiation completely off the table but we want to see how chemo is going to work for now.

So then it was on to the Oncologist, and my chemo medication. I’m taking them orally again, but on a much higher dose. 250mg more than before, and only for 5 days. (Today is the last day!) Then I go back in 3 weeks and get another round.

Let me tell you, this round of chemo has me all kinds of feeling like every cancer patient. I have puked (only the first night) and felt nauseous every day.

My brain fog is real, and I know there is much more to include in this update but I’m at a loss for words.

MRI Pictures: The arrow in the 2nd picture is pointing to the recurrence

If you would like to financially assist me you can go to my go fund me page: https://www.gofundme.com/f/spectacularslicer
which was made by my bestie, Block. It talks about getting my a spect scan for my 35th birthday which was back in May. I did get the spect scan and now I have other medical bills.


Venmo: sliceslicebaby182
Cashapp: $slicearita

Post Op — 32 days

It’s been 32 days since the removal of my 2nd brain tumor, yeah it wasn’t scar tissue like we were all hoping.

I’ve been quiet about what my doctors have told me, but currently, I don’t have any more answers since meeting with 3 out of 4.

The neurosurgeon’s job is done, so he gave it over to my oncologist, who I met with yesterday, the same one as before. We both agreed that this time around, it would be in my best interest to go to someone who has everyday experience with brain tumors, so he sent in a referral to Piedmont Hospital in Atlanta, they have a small yet only dedicated brain tumors team. Duke in NC and Mayo Clinic in FL are 2 other choices I was given in this area.

I’m giving myself the best chance to live a longer life.

We know that we do not want to follow the same thing we did last time. We talked about chemo and radiation again, but not going the same route, doing a different kind of chemo and seeing what my radiologist has to say. So that is why my oncologist sent in a referral also to my radiologist. The only one I haven’t met with this time around.

I know I look to the bright side of things, and everything that is told to me, not only regarding this but in everyday complaints. I find the good in it or want to see the decent side of everyone and every situation.

Yesterday and today showed me that I can’t keep doing that. It only causes me more pain in the end. My light is dimming and I don’t know how to get it back. I’ve cried 100,000 more tears than before.

Going into this round with the knowledge I’ve gained from 8- 9 years ago. I don’t have anything to keep me going. I kept myself cheerful after the surgery and the 2 days in ICU because I was cautious but hopeful.

This “reoccurrence” is uglier than the first one, which I knew IF it came back it would be, but to actually be going through it now — I was naive and looking to the bright side the first time around.

As a “more aggressive appearance” more like a glioblastoma. The previous time was a low grade (grade 2) this one presented itself as a grade 4. The funny thing about brains is that you need them. So you can’t take out just the tumor and an additional 4 inches around without losing functions. This is why they tend to reoccur.

So to summarize:

– The tumor was back, but removed it came back from pathology as a grade 4.
– We are not sure which post op treatment route we are going this time, definitely not rushing into anything post-surgery as quickly as we did last time because that resulted in complications with my healing and recovery.
– I’m going to see a specialist out of town that works WITH brain tumors on a daily basis, possibly seeing about clinical trial opportunities
– Working with MORE doctors to try see the best way to keep me alive and tumor-free for longer
– I’m working with my neurologist to be weaned off my Keppra but still taking Lamictal, generic name Lamotrigine

I think this post answers all the questions my readers may have, but don’t hesitate to send me a facebook message, text (if you have my number), or comment here. I’m overwhelmed talking about it and repeating it to everyone, that is one reason I like to do this blog, but it also helps me express my feelings and maybe find it will find its way to others that are struggling.

I’m most days emotionally exhausted. I may project a happy outside but inside its not been like that for a very long time.

And to end this on a lighter note and I like this kind of stuff: *WARNING* graphic picture below:
This is not just an image of my brain (CT, MRI, SPECT) but the actual brain and tumor.

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Please put me in a medically induced coma.

I feel like I have another blog entry with that title. It’s the title from a song that I’ve had on my playlist for years, but today it hits differently. (I’ll add it to the bottom of this blog, artist: carolesdaughter)

A follow-up to my previous post (and this is why I typically DO NOT write them the day of a seizure) I had ANOTHER one, 5 hours later. 😦 Same amount of time, and everything.

I’ve been good since then, and work keeps my mind busy and NOT thinking about what is going/not going to happen next week. I also have been able to go to the gym a couple of times with the neighbor bestie — and THAT WORK OUT HIGH … oh how I’ve missed it. Sure I have stuff to work out with at home, but do I use it? Not as often as I should, but GOING TO THE GYM — can’t describe the feeling unless you feel it too — you know what I mean.

But, let me be real with you guys for a minute.

I’m ok, not ok about this surgery next week. I’m an emotional mess (more than usual, lol) and I am making jokes more than normal to keep control of the continuous waterfall coming out of my eyes.

Going into this surgery — I’m aware of what COULD happen. Last time, I was SO OUT OF MY MIND (literally) that I didn’t know, or was aware of what was going on around me.

This will be the last blog entry for a while, because I do not KNOW what is going to happen to me next week and I’ve got to keep my peace about me. I may not respond to texts, snaps, FB messages, IG comments, or TikToks as much as I have — and please do not be offended. I’m going to take a much needed social media break so I can focus on my mental health to prep for this surgery and recover.

SEND POSITIVE THOUGHTS, JUJU, and GLITTER my way whenever you have a spare moment.

Friends have asked if they can visit me like last time, but honestly, I’m not sure how long I will be there this time. Could be just a few days, could be a week or more.

My fella, Daniel and my Momma: Barbara will be able to answer those answers when we know.

As promised:

Love and Fairie Dust,
SLICER ❤

5 weeks 5 days

Pretty much right on schedule. Just a few days shy of right on the money. I predicted it would be the week of 9/4-9/10 and today it’s 9/12. The last couple have been 5 weeks and 2 or 4 days. So being 5 weeks and 5 days is not awful. Predictable. WHY tho? A great mystery. This one lasted less than 2 minutes and I was standing the whole time. The only thing that I can find positive about these last couple of seizures — is that I’m not passing out, and I’m completely aware of myself the whole time.

Nearly a week to the day of my surgery as well. Surgery is next Tuesday (9/20) and I sorta wish it was tomorrow.

The last time I had a neurologist appointment was on 8/31 and that was A WEEK away from exactly 5 weeks since my last seizure. So we were talking about it and she said IF I do just take another 25mg of Lamotrigine (which is on hand already) and just keep taking that for a week, 2 x a day, and MAKE SURE I CALL THE OFFICE, well of course I’m going to call. I always call. I may have to get up to 200mg of Lamotrigine (or more, due to bodies metabolizing medication differently) before I can be weened off 750mg of Keppra. All of course this could take a different turn depending on how my surgery goes.

I’m not ok. I’m ok — but not if that makes sense. Everyone is so positive for me, and I know last time I had so much positivity about it, but right now. I don’t know.

How do I tell you this….

I could just make it quick — like: Hey, I’m having (another) surgery.

Or I can go into detail about it being my fear realized and the rollercoaster of emotions I have been on since Monday (8/29) at my Neuro Surgeon follow-up regarding my SPECT scan.

Because the roller coaster ride I’ve been on is NOT fun.

I knew it was a possibility, and ideally, that is what should happen. I don’t have a fear of the surgery itself, because frankly — been there done that before. I’m just afraid of what they will find. We don’t know if it’s the tumor regrowing or if it’s just scar tissue. No test can tell us for sure. So I have to go under the careful hands of Dr. Reames again on 9/20. He will take a biopsy and from there we will know more, and build a game plan based on his findings.

“Brain tumor survivors: don’t become hopelessly discouraged if you are experiencing deficits. You are in a war and you are bound to have a few battle wounds.” ~ Rachel Grady

I’ve been keeping my emotions balled up inside of me all week and just couldn’t bring myself to write this blog to update you all. I cried and slept all day Monday.

I had a follow-up on Wednesday with my neurologist and so far we are not going to make any changes to my medication. I have been instructed to add an additional 25mg if I experience another seizure next week. (9/4-9/10) is my estimated timeframe for another seizure, at least if these every 5 weeks and some odd days hold up true. I’m better aware of it, instead of catching me off guard.

We are trying to ween me OFF (750mg) Keppra and onto (up to possibly 200mg but currently at 150mg) Lamotrigine [la-MOE-tri-jeen].

I wish I could tell you more regarding the surgery itself, but honestly, I don’t know.
What I do know is I’ll stay with my parents again, and have my Mom take me to my appointment(s). From there I do not know how long I’ll be in the hospital. That is all TBA.

Daniel will have to stay at our home to care for our small farm of animals, ( >.<) and continue to work. I would like to just take a moment to share on this “farm” because they bring me great joy! You all know about Mister Carlito, he’s my lova boi, my coworker, shadow, and adventure buddy. I will MISS him terribly. My two beautiful kitties, Geno and Sassafras. But recently we added, a long-term foster named Millie — she’s a solid black cat, and a Betta fish named “Thin White Duke” he’s a platinum white male with the most beautiful tail.

Working from home, and being isolated from the outside world, due to rain and not being able to drive. I need this joy.


Now to share the test results from my SPECT scan on 8/8/2022

Study Result:

Impression

Interval increase in regions of nodular enhancement along the resection cavity with the largest area of nodularity measuring 2.4 x 1.9 cm, previously 1.2 x 1.1 cm with interval increase rCBV on perfusion at this location. These findings are concerning
for recurrence.

The attending radiologist has reviewed all images, agrees with the interpretation, and provided appropriate supervision for this exam.

Interpreted By: Christopher Burns 8/8/2022 1:29 PM Electronically signed by: Andreas Schilling, MD 8/8/2022 2:00 PM

Narrative

MSAV1914201

HISTORY:
Malignant neoplasm of frontal lobe of brain (CMS-HCC)

MRI BRAIN SPECTROSCOPY W WO CONTRAST

COMPARISON:
MRI brain on 11/15/2021 and multiple additional priors

TECHNIQUE: Multiplanar multisequence MRI of the brain with and without intravenous contrast, spectroscopy obtained.

FINDINGS:
Postsurgical changes of left frontal craniotomy and mass resection. Interval increase in regions of nodular enhancement along the resection cavity. The largest region of nodularity measures 2.4 x 1.9 cm, previously 1.2 x 1.1 cm with interval increase
rCBV on perfusion. Lactate peak noted on spectroscopy suggesting some internal necrosis.

Interval increase in associated vasogenic edema. No mass effect or midline shift. Similar hemosiderin deposition along the resection cavity. Imaging does not however demonstrate significant rCBV.

Diffusion imaging shows no hyperacute, acute, or early subacute infarction.

There is no extra-axial fluid collection.

The ventricles are normal in size.

Flow voids of the larger intracranial vessels are present.

Paranasal sinuses and mastoid air cells are predominantly clear.

Marrow signal pattern is within normal limits.

Mild increase in lactate peak on spectroscopy.

Update 2.0

A week ago, I had my SPECT scan. I’m so thankful that the tech caught that I was scheduled for this on a Sunday, which they can do “normal” MRI’s on the weekend, but this is something more involved. Same machine, but needs to have more direct involvement with a Doctor. So she was able to get me in the very next day. Which by our lucky stars, was tooooooooo perfectly. I was already off but Daniel was also off on Monday, which is not usually the case.

I have received the results. I won’t share them here until after I meet with my Neuro Surgeon on the 29th. I did have a follow-up with my Neurologist on the 10th. They did look at them, and even tho there isn’t a definite tumor — what is going on in my brain is not “normal” and it’s reacting in these seizures. They didn’t want to make any changes to my medication until I have my visit with my Neuro Surgeon.

I do have a solid 150 mg pill now for the newest “skittle” to my daily routine. Which is so much nicer than having to take 6 of those tiny pills.

We call all of my daily pills skittles. (Daniel and I call them skittles, wish they taste like them tho!)
So I got a weekly pill organizer that is a different color for each day. So now I can “taste the rainbow” HAHAHAHA!

I’ll share it one day here… I think it is amazing. I can just take one day out at a time and if we go out before my AM dose, or stay out late for my PM dose I just have it there with me. I set it once a week and I’m set for the rest of the week. Saving time!

This was a quick update, I have had a few of you reach out, and thank you for being so concerned about my health. You are all the best!!!

As for those that are having their own struggles, remember you can do this. You are stronger than you think you are.