The Hits Just Keep on Coming...

I've had spells of dizziness for years.  It's not vertigo where the room spins, it's just a feeling of unsteadiness. I'll have to hold onto something and sit for the rest of the day.  The next morning I'd wake up, and all would be well.  Enter Sunday afternoon.  

I became dizzy Sunday afternoon.  No problem.  It will  be fine tomorrow when I need to go to work.  I woke up Monday and when I slowly stood up, my knees buckled and I fell right back onto the bed.  There was NO WAY I could go to school.  As a teacher, I have to actually be able to walk around the room, manage behaviors, and teach!  When you can't even stand up, you can't be productive as a teacher...full stop.

So Monday I stayed home, and monitored what was happening, praying it would get better so that I could go to school on Tuesday.  I began creating lesson plans, just in case I would need them, but HOPING I wouldn't.  My speech became a little slurry, which was different.  The symptom that scared me the most was that I couldn't read the words on a medicine box, or the directions on how to cook something.  I'm near sighted (can't see far), but I didn't go from that to needing bifocals overnight!  Writing wasn't blurry, but fuzzy and completely unreadable.  

Tuesday morning it was no better.  Figures.  Why not?  I already have so many issues, what's one more? It was time to go the Instacare.  A friend took me.  I had no idea how Instacare could help me, but the symptoms weren't going away.  Maybe there was something they could give me.  Well, what was supposed to be an hour appointment turned into a 3 day fiasco.

After doing the regular initial tests, "squeeze my fingers", "push against my legs", ext.  The doctor had me stand up, keep my legs together, and put arms up to my side.  I began swaying, quite a bit.  The doctor suggested I go to the hospital because they don't have the ability to perform a CT scan.  He was worried that I might have had a mini stroke.  Say WHAT?  A mini stroke?  

Well, why not.  I had breast cancer at 44. Let's just add mini stroke at 47 to the ever growing list of health issues I've had to deal with my entire life.  

The purpose of a CT scan is to detect diseases, infections, tumors, and internal injuries, or to guide biopsies and surgeries.

So the doctor calls the ER, because the Instacare doesn't have that equipment, let's them know we're on our way and off we go to the Riverton Hospital where I've had countless surgeries and physical therapy for back problems!

I check in and they grab a wheel chair for me because the room I'm going to is quite a long walk.  In the end, I was very grateful for the wheel chair.  It took a while for the doctor to come in because, we're in a hospital!  I have the CT scan done, and, surprise; it shows nothing.  It can't see my cerebellum, which is what they needed, making it impossible to determine if I've had a mini stroke or not.  So this test was POINTLESS.  Let's just say I hit my yearly deductible the moment I had that stupid test done.  It was at this point that the doctor tells me to immediately go up to the main hospital where they can do an MRI, and I'll be checking in.  She also told me that I can't go home first to grab a few essentials since they're getting a room for me now and will only hold it for so long.  I can go by ambulance (NO THANK YOU), or Nick can take me.  I'll take door number 2, thank you.  She was also sure to tell me that I should've gone to the ER the minute I felt these symptoms.  Umm...these were normal symptoms, you moron!  Some people just shouldn't be doctors.  

So Nick left work to come and get me since my awesome friend had been with me since about 9AM and by this time it was about 4PM!  

Symptoms of a mini stroke are very similar to those of a full on stroke, which include:

- Weakness or numbness, especially on one side of the body (NO)

- Confusion, trouble speaking, or understanding speech (NO)

- Sudden vision problems; blindness or double vision (YES)

- Dizziness, loss of balance, or difficulty walking (YES)

Apparently these are also a warning signs for a full blown stroke, so this explains the urgency to go straight to the hospital.  The part that irritates me is that none of this was said to me while I was in ANY of the hospitals.  I was just told "mini stroke". 

Once inside my hospital room and in the stupid hospital gown, I sat down and got ready for the long haul.  IV's are put in and many vials of blood are taken to be sent to the lab.  The nurses were very kind.  I was told that I needed an MRI to help determine what was happening.  I reminded them that I have two metal devices, one inside my brain, and the other in my chest that help with my seizures.  I can't have the MRI until those are turned off.  Needless to say, I was NOT happy about them turning these off, but since it was for a good cause, okay.  My Neurologist had already gone home for the day, along with the few people who could turn these off, so the MRI would have to wait until the next day (Wednesday).  I was FINALLY told that I could eat and drink.  Riverton hospital wouldn't let me in the event that surgery was necessary.  And with that, Tuesday ended.

As many of you know, hospital beds suck.  I haven't been overnight in a hospital for over 10 years when my initial RNS device was implanted into my skull.  I can tell you that in those 10 years, the beds haven't improved or become any more comfortable! It's also difficult to sleep through the night since the nurses have to come in and check your vitals every two hours.  They always feel bad about it, but oh well.

Wednesday was a waiting game for someone to come and turn off my devices so that I could have an MRI done.  It was ridiculous.  I was still dizzy, but not as bad as the previous days.  I had an ultrasound of my heart done, since they still wanted to make sure I hadn't had a stroke.  

It took until almost 1PM for my devices to be turned off.  We then had to make sure there would be someone at the hospital who could get them turned back on after the MRI.  I was told that there was a doctor who could help.  A few more hours pass with us again, waiting.  I had asked the nurses to please give me some Valium before the MRI since I was a little more nervous about the test with the devices in my body.  They gave it to me, and off I went.

There is one positive that has come from this:  MRI machines have changed for the better.  It's always been a very claustrophobic event. This is a picture of an older machine.  The mask over your head makes this even more nerve wracking.  Somehow, I've always been able to sleep through these.

As you can see, this is not a fun experience at all!

Now, where it's still claustrophobic, the mask directly over your face is gone.  So much easier!  

Then we needed to wait for the Radiologist and Doctor to look over the MRI to let us know what in the world was going on.  When you are sitting in an uncomfortable hospital bed, having to order room service, (which actually wasn't that bad), and just wanting to go home, the wait takes forever.

Finally, the doctor came in.  She tells us that I have what looks like a cerebral tumor.  Apparently it was on my last MRI in 2016 and she wants me to have another MRI, but this time with contrast, where a dye is pumped into me through my IV and will give the doctor a better look at my veins, tissues, and any inflammation I may have.  I was told that the second MRI would be that night, but it wasn't.  That was the end of Wednesday.

The second MRI was right at 8AM Thursday morning.  I was stunned that it was so early.  Thankfully, it showed that there wasn't a tumor.  It's just a mass that hasn't grown and isn't doing anything.  Nick calls it a planet without a name!  So thankfully, no new brain issues!  

A physical therapist came in to see me and learn a little more about my situation.  She told me something disturbing.  I was told that one of two things could happen.  I could be sent to a facility for three weeks where I would live and have physical therapy 3 to 4 hours a day.  The other option would be for me to go home and then participate in physical therapy.  The "head" physical therapist would be making that decision after he met with me.  I had been pretty good mentally through the past two days, but when she told me this, as soon as she left the room, I completely lost it!  I just started crying.  Suddenly I felt like I was a 90 year woman who couldn't do anything by herself, and was being sent off to a home (I apologize if that offends anyone).

Later that day, the head therapist came to see me.  Using a walker, because there was no way I was doing it on my own, we walked down the hallways to a set of stairs, like the emergency stair well.  After questioning me, they discovered there are stairs in my house, so I was taught a new way of walking down and up the stairs.  I did pretty well, especially with the help of the walker.  I was told that I could go home, which was the greatest thing to hear!  We talked to the doctor and decided to lower one of my medications.  There has been a long standing theory that my meds may be too high.  

So what was the official diagnosis for me:  Vestibular Migraine.  This phrase sounded so familiar to me, and I couldn't figure out why.  Talking to my sister today, I was reminded why.  I was diagnosed with this YEARS ago by my headache doctor, and I even went to physical therapy for it!  It's unfortunate that I had to spend 3 days in the hospital on "stroke watch" just to be diagnosed with something I've already dealt with! 

What are vestibular migraines:

A neurological condition causing recurrent vertigo, dizziness, or imbalance, often without a severe headache.  It is a common cause of episodic vertigo, affecting the inner ear's balance system.  Symptoms, which can last from minutes to days, include nausea, sensitivity to light/sound, and motion sickness.

The last thing that was needed was 90 minutes of a combination of Benadryl and Magnesium to be pumped through my IV.  During that time a representative for a company named Boston Scientific Cardiac Diagnostics came in to talk to us.  Apparently I was leaving the hospital with a heart monitor, even though the ultrasound of my heart was just fine and there was no sign of a stroke.  Absolutely ridiculous.  I realize that this is the hospital covering their butts just in case, but I will have to wear this monitor for 30 days.  It has a "phone" with it that will monitor everything.  It's waterproof, which is good, but it can't be more than 30 feet away from me to gather the information, so it will be inside my pants pocket. Both the phone and the device need to be charged, so the part on my chest actually comes off.  One day into this and I can tell this "phone" doesn't hold a charge very well.  It's also in a ridiculous place.

So that was my chaotic three days.  Along with a heart monitor, I came home with a walker and purchased a shower chair.  I officially feel MUCH, MUCH older than I am.

I'm now off work the next week, and the week after that is Spring Break.  As of now, I'll return to school on April 6th.  I already miss my kids so much!  Wednesday, they did a "Where is Mrs. Toale?" paragraph, and apparently without any help, they said I was in Florida at a Star Wars Convention!  Oh, how I wish.  That is hysterical!

Thanks to everyone who has helped us out since Tuesday.  You are so appreciated!  

HERE'S AN UPDATE:

Well, turns out I didn't even need to use the walker, or the shower chair, which is WONDERFUL!  I have physical therapy I'm starting to help with my balance, and I have an appointment tomorrow with my migraine doctor to find out if I can qualify for a shot that you give yourself once a month to help take away vestibular migraine symptoms.  That would be INCREDIBLE!

Once again, thanks to everyone who helped me out.  Never in a million years did I think I'd have to rely on people this much.  Thank you for all that you've done!

Another Milestone

Well, Thursday I had my first haircut since April of 2022.  I was really nervous going into it, but I finally had enough hair, and it was time to do it.

I went to the same lady who chopped my hair off before I started chemotherapy, so it really was a full circle.  It's funny now, but when I first had my hair cut, I only got emotional when she began to shave my sides off, like in the picture on the top right of the collage.  I hated this so much that Nick helped me shave it that next weekend (bottom left picture).  When she cut my hair this time, my sides were cut short again.  I didn't even care!  I was surprised by how much hair was cut off during this first cut!  I knew it needed to be done to help my hair grow in evenly.

HAIR PROGRESSION

Hair as of January, 2023; about 6 months post chemotherapy:

I'm okay with this cut.  Friday was the first time I went out of the house without a chemotherapy cap on since last April.  I was very nervous doing my hair that morning and found myself getting emotional about it.  I wasn't very confident about my natural hair color, and I just couldn't believe I was using my usual shampoo and conditioner, and putting product in my hair again.  It has been 10 months!  Walking into the school I worried about what people would say.  They all noticed that I wasn't wearing a cap, and thankfully, they all complimented my hair.  My students instantly knew something was different, and loved seeing my hair...they've never seen it!  I even had a random 3rd grader in school, who I don't know, tell me he liked my hair!

This meant that I was now able to pack up my chemotherapy caps.  I've had these two coat racks in my room since April, and found caps that I liked to wear each day.

Here is the wig I bought.  I found out quickly that I didn't like wearing a wig.  It was very tight on my head, and simply uncomfortable.  I would only wear this when I had a job interview, so it served its purpose.

All packed up, including my lumpectomy pillow.

The coat racks are pretty empty now!  I need to figure out what to do with these.  We'll keep at least one in the house.  Maybe the other will go into the basement.  

I'm thrilled that my hair is growing back so quickly.  I'm almost done taking the hair supplement that I've been using since July, and I'm now using my old shampoo and conditioner instead of the specific hair growth wash.

I've been given a prescription for adult acne.  It continues to get worse.  The ridiculous part is that it will take up to THREE MONTHS for this to kick in!  I'm really tired of cancer drugs, chemotherapy drugs, and now menopause screwing with my body.  I didn't have acne like this when I was young, I shouldn't have to be dealing with it now!!

On January 31st it will be a year since I was diagnosed with breast cancer.  Tomorrow is the anniversary of my first mammogram in the mobile unit at my doctor's office.  I've said it before, but I can't stress the importance of NOT having your first mammogram done in a mobile unit.  At the end they tell you they'll probably need you to go to the main hospital for better images anyway, so this is a pointless trip.  It was at this second trip that I was diagnosed.

Looking back at this last year, it went by really fast.  I can't believe it's almost been a year since this all started.  It didn't feel like it was going fast in the middle of it, but you know what I mean!  I look forward to my body continuing to heal from all the poison that was pumped into it.  

The Fallout From Cancer

Almost a year ago my life changed forever.  On January 31, 2022, I was told that I had breast cancer.  After a long battle that included surgery, hair loss, months of pain, harmful chemicals being pushed into my body, undergoing radiation treatments, all the while having to look for a new job, applying for many jobs, and attending stressful interviews, I am done.  I had an ultrasound mammogram done of October 26th and found out on November 2nd that I am officially CANCER FREE!  I can't describe how glad I am that the treatments are over that the cancer is gone.

Where I wish it would've been smooth sailing since becoming cancer free, it has been anything but that.  To help keep the cancer from returning, I now take an anti-estrogen pill that has created some frustrating side effects.  I'm only 44 and I'm in full blown menopause.  It's ridiculous.  I experience multiple hot flashes each day, and have to have access to a fan at school, at home during the day, and at night.  Even though it's winter, and it's freezing outside, I have a fan on.  Unfortunately, due to the age of the building I work in, my classroom is always a balmy 75 degrees, so the fan doesn't bother the kids very much.  I tell them to wear their jackets if it does!!

  

When I first began this medication, it was too strong, making me so tired that I literally couldn't keep my eyes open.  Working at a brand new job, this wasn't the kind of impression I wanted to make, so we had to lower the dose.  That stopped the problem with keeping my eyes open, but continues to make me tired.

The chemotherapy drugs are now out of my system, however, the entire process continues to mess with my body.  I've learned that there is actually something called "Chemo Brain", where your memory is affected.  My neurological issues already screw with my memory, so this is making me look like an idiot.  I've mentioned how the color of my skin has changed on a previous post.  Now another skin issue is happening.  I've never struggled with acne, but I am now...even though I'm in menopause and I've always heard that crap is supposed to stop during that time!  

The scar tissue from my lumpectomy is interesting.  Not only is it larger than I thought it would be, but it's so hard that you'd think I have another tumor, making it uncomfortable based on how I'm laying down.

The most ridiculous, frustrating, embarrassing, time consuming and painful side effects I continue to deal with are my gastrointestinal issues. They make me miserable.  I had to have a colonoscopy to check for problems in my colon because of what I'm dealing with.  Luckily, there is nothing wrong.  It was the most disgusting preparation for a procedure I've ever had to go through, since you are asked to drink a concoction of different nasty products, and you have to drink A LOT of them!  

I want my body back.  I'm tired of "Chemo Brain", being tired all the time, the menopause side effects, and most of all, the gastrointestinal problems.  I've heard that it can take up to a year for your body to completely recover from Chemotherapy.  7 months is a long time to have to continue to deal with these issues.  I've had it.  I believe I've dealt with everything cancer has sent my way without any argument and, on most days, with a smile on my face.  I'm just tapped out.

Okay, there are the bad things.  Sorry if I bummed you out.  Like I've always said, I think it's important to keep this experience real so that not only do I remember it because of my crappy memory, but so that it's available for other people to read in the event that they also develop cancer.  Unfortunately, it's already helping a few people I know.  

I do have good things happening, too!  My hair is regrowing, and it's growing much faster than I thought it would.  I'm using a shampoo and conditioner specifically for hair regrowth, and I take a hair growth supplement.  My hair is growing back much more salt than pepper, and it's definitely growing in with what they call the "Chemotherapy Curl".  It wasn't naturally curly before.  It is right now.  I'm trying to decide whether I'm going to color it like I always have, or keep it its natural color.  I look forward to the day I can pack up all the Chemotherapy caps and hats that I've worn since April.  I have a box ready for them, and I don't think I'll need them much longer.

I'm also finally getting my feet under me at my new job.  It has been a stressful three months as I've learned the new curriculum, and what the school and the district requires of me.  Public schools are very different than charter, and each day I learn more and more.  My administrators have been incredible through this by not only being new, but also being understanding with my health problems.  It has made this part of my life a little easier.

I found an incredible stamping plate, and its theme is cancer.  I look forward to using it in the future, especially next October.

Here's the progression of my hair growth:

August

September

October

November

December

This is the hairstyle I'm thinking about doing.  This is the color my hair is now, and I think it's really cute.  My hair is just about long enough to do this, and then I won't need to wear the caps on my head anymore.

Throughout all of this, I have missed my mom so much.  This is the first medical problem I've had (and I've had MANY) where she hasn't been here.  I like to think that she is proud of me, and how I've dealt with this entire experience.  My memory issues have taken away many memories of her.  If I didn't have pictures, I wouldn't remember what she looked like.  If I didn't happen to have a few recordings of her, I wouldn't remember what she sounded like.  It is a side effect of my neurological issues that has robbed me of so many memories throughout the years.  Important memories that most people take for granted.  NEVER take for granted your memories, good or bad.  

Here's to hoping 2023 is a better year.  It's funny because I've hit my medical deductible within the first 3 months of the year the past 3 years in a row.  It's nice not having to pay for medication and doctor's visits, and to have procedures pretty much paid for!  The "joke" now is, "I wonder what will happen in 2023 to make me reach the deductible"!  It's not really a joke, but I still wonder.  If it's not one thing, it's another.  

Reflections

I had my last radiation treatment yesterday and I'm officially cancer free.  As I sit here this morning, having had a celebratory dinner, (Texas Roadhouse!) I find myself reflecting on the past 7 months.  If you'd like a recap, click HERE for all of my posts about this journey.

You'd think that I'd be screaming from the roof, "I'm cancer free!", but I've found myself feeling very indifferent about this.  I figured this would be the easiest post I'd write concerning this process.  Turns out, I can't quite think of what to say.  Seriously...I really don't know what to say!

Seven months ago I was diagnosed with breast cancer.  I cried and screamed.  I was scared and angry.  I didn't know what was going to happen, or how I was going to make it through this diagnosis.  I lost my hair, my taste buds, and a little weight.  I found myself forced to find another job while continuing through chemotherapy adding even more stress to my life.

I am physically and emotionally exhausted.  My body is still recovering from chemotherapy, and will now begin recovering from radiation treatment.  I will go through a few weeks of pain, redness, and itching.  I just started a new school year at a new school, needing to learn a brand new curriculum and computer system.  Technology and I don't get along very well, and after only two days of school I'm completely overwhelmed and on information overload!  Maybe that is why I'm just not as excited about this.  My brain is busy thinking about too many things!

I am worried about continual side effects, such as "chemo brain" where you have trouble remembering things, fatigue that will now be even worse since radiation is over, and the gastroenterology problems I'm still dealing with.  

I will now have a mammogram every six months to not only monitor the spot where I had cancer, but to make sure the very small mass found in my left breast doesn't grow into cancer.  

I will begin taking anti-estrogen pills to help keep cancer cells from regrowing.  These will continue to push my body into menopause, and continual hot flashes will be a constant in my life.  Since I've been told I'm in the hottest room in the building at school, this will be fun!  Sorry, I'm just not feeling very festive right now.  The usual "laughing it off me" just isn't here right now.  This has COMPLETELY changed my body and life, and I'm pretty sure I will be dealing with the side effects until I'm gone.

On a positive note, my hair is slowly growing back.  It's hard to tell because it's all coming in white.  I can eat food again, and there isn't poison running through my veins.  This experience could've been much worse.  Treatment could've been twice as long, and it could've taken my life.  My bouncy self will return, but right now I have to reserve it for 5th graders 5 days a week, 7.5 hours each day!

I want to thank all of you for your kind words and support throughout the past 7 months.  It has been helpful knowing that there have been so many people rooting for me.

Radiation Therapy: Week One

Now that I've completed my 4 rounds of chemotherapy, I will begin Radiation therapy. If you're not familiar with my story, click HERE to get caught up.

I will go through three weeks of therapy, 5 days a week.  Each session will take about 20 minutes.  Last week I had to have parts of my breast "tattooed" with what was described to me as tags so that the radiologists would know how to line me up on the table each day.  These "tags" were poked into me with a needle.  They will leave permanent "freckles" on my skin.  I have 6 of them, and I can clearly see them.  Just another way for cancer to leave its mark on me!

The radiation machine, which is called a Linear Accelerator, is huge.  I lay on my back with my arms above my head.  There are two small poles that I hold onto and once I'm in position I'm not allowed to move at all.  The machine then moves around me.  For once the machine doesn't get too close to me, so I don't feel claustrophobic. 

While I'm undergoing radiation therapy, there are certain "rules" I need to follow so that I don't further irritate my skin.  I have to use aluminum free deodorant to help avoid skin problems.  They gave me a list of products to choose from.  They also have a preferred list of lotions to use to help keep my skin from peeling and to provide comfort.  I've been told to expect my skin to turn red like a sunburn, and to expect it to hurt.  I've also been told that I can't shave my armpit while undergoing radiation.  Here's to hoping my hair doesn't start growing back there!  Radiation will shrink my remaining breast tissue another 10 - 15%....lovely.  I was hoping to avoid breast reduction surgery on my other breast, but I worry that now it may be needed.  We'll see.

Day 1; 7/26/22

I arrived and changed into a gown.  The radiologists are so nice.  They showed me the lockers where I can put my stuff, and I got ready to be taken back to the machine.  I was asked if there was any music I'd like to listen to since they have Spotify.  I told them 80s music all the way!  

After lining me up and letting me know I can't move until they're done, they started the machine.  I wasn't sure what to expect.  Would I see the actual radiation beams, or something else coming through the machine?  Nope.  What they did have was nice ceiling art to look at while I was on the table.  Something similar to this picture:

This first appointment took about 30 minutes since they needed to take x-rays for comparison later on.  It was really easy, and went quickly.

When I got home, I started to notice that I was feeling warm on my right breast.  I wasn't expecting to feel anything this quickly, so I put on the approved lotion that I bought.  I was also more tender than normal, and it was uncomfortable to lay flat on the bed.  I began wondering if I was going to have to figure out another way to comfortably sleep.  

Day 2; 7/27/22

The appointment only took about 15 minutes from the time I got there until the time I left!  I spent less than 5 minutes on the table.  One song on Spotify didn't even finish!  I wasn't as sore as Day 1, but still warm, so I used the cream again.  I will most likely use that every day.

Day 3 & 4; 7/28 - 7/29/22

I was EXHAUSTED day 3 and 4.  It was like my 2nd round of chemotherapy type of exhaustion, where I couldn't even keep my eyelids open.  I'm wondering if the radiation fatigue that isn't supposed to hit me until after treatment is over is hitting me now.  I was told that the side effects could last for up to a year, and since I'm already experiencing the fatigue, I wouldn't be surprised if this is what happens. 

I finally broke down at home yesterday.  I believe I've handled this very well since my diagnosis in January.  I had surgery in March and recovered quickly.  I shaved my head in preparation for chemotherapy and didn't cry hysterically.  I went through two rounds of chemotherapy while continuing to work, two more over the summer, and I believe I handled chemotherapy like a champ.  I've fought through every disgusting side effect that has been thrown my way, many that I'm still struggling with, and have just kept on going, trying so hard to not complain along the way.  But I've had it.  I'm done.  I want control of my body back.  

I'm stressed about how these new side effects will get in the way of my daily life, and how those I continue to experience will make it even more difficult.  It sounds like the radiation effects are possibly worse than chemotherapy effects!  I go back to work on the 10th.  I have a NEW classroom to completely move into and set up, a NEW curriculum to learn, and a NEW job to fulfill.  I will continue to do what I've always done, and, as Dory says, "Keep on swimming".  It's the only way I know how to keep going.

Here's an incredible performance of New Kids on the Block and New Edition from the American Music Awards from January of this year.