Radiation: Making the mask & beginning treatment.

Posted on by ashleyms27

radiation maskThis Green mask was my radiation mask. The appointment where this is made, was one of the weirdest ones. Not even the actual radiation was as weird as having the mask made. First they do a ct to make sure you are in the correct position, I think they had to move me around a couple times. They warn you that this is a material that is going to be super hot, they dunk it in SUPER burning hot water, it softens it so it will mold around your face. It really was hot, I wanted to rip it off my face. They said I had to hold perfectly still for a certain amount of time.

Basically they give you this card you scan when you check in for radiation, it shows your name on a big monitor. It says what room your treatment is in, and it lights up and makes a “bing” noise when your room is ready for you. That first treatment I was nervous, when they finally had it be my turn a nurse came out and said normally I would just go find the dressing room and get into the gown. The nurse shows me where the dressing rooms are, I had to take my shirt and bra off but could leave on my underwear, pants, and socks. I do that, and they tell me my room is right around the corner and to sit on a chair in the hallway and they will call my name when they are ready.

My mind was racing sitting in that chair. I wondered what this was going to feel like. Was this going to hurt? I read that some people absolutely hate radiation. Was I going to be able to hold still? What if they hit something important with radiation instead? Logically I knew these people knew what they were doing, but anxiety will do that to you.

“ASHLEY?” a young radiation tech called out.

I stood up shook her hand they showed me where to put the key to my dressing room locker. The room has a very thick door which shuts it off from being connected to the outside world haha. felt like a cave.

They inform me that they will be locking me into the table using the black knobs all around the mask. This is to ensure that the radiation will hit the correct place and to help keep me in the correct position. So they ask me my first and last name and date of birth. thats how they make sure you are the correct person. They then tell me to lay down, and my head rests on this plastic headrest. its pretty uncomfortable.

they lock me in and tell me today will take a bit longer as they have to do a “run through” to make sure im in the correct spot. normally they do check but this is like doing a fake treatment before the real one. That went fine, they said I was in a great spot, and also they can communicate with me over an intercom. They are in a separate room where they control the machine.

“alright ashley, we are about to begin. Great job holding still so far”

Theres a loud beeping noise of the machine i could feel warmth on my head where the radiation was going. I got the WORST like metal or chemical like taste in my mouth. I focused on breathing. I remember feeling happy when it was over. WOW, this isn’t horrible. the worst part was the long drive from my house to downtown chicago.

I saw the doctor after and we talked about my experience, if it was good and how I was feeling being on chemotherapy pill and radiation. Luckily no nausea so far!

 

Have a good wednesday, hope to be posting again at the end of the week 🙂

Ashley

Me vs Cancer the beginning

Posted on by ashleyms27

Hey happy Friday!!!!!

Let’s get back into it, so I learned it was cancer and we met with the nurse from the chemo doctor and the actual chemo doctor. He informed me I’d be taking Temozolomide. It would be in pill form, and I’d take it every single day one pill a day while I did radiation. Then a month after radiation ends I’d be taking them once a month for about six months. Didn’t sound too horrible. I was more nervous about radiation. Getting the chemo pills was fun though they had to be ordered by a special pharmacy and delivered to me. Haha that was fun. So intimidating as well.

We also met with the radiation doctor and he is SO NICE. Like literally one of the nicest people I have met. He told me I would come back another day and have the mask made but that it would be Monday-Friday for 6.5 weeks. That would be a lot of driving was my thought. We wondered if we should switch to a hospital closer for treatment but the chemo doctor told us they’d have to completely hand my case over, I couldn’t just get treatment closer to my home. We decided to stay with the doctors downtown and my dad and Arthur were going to take turns driving me downtown.

On April 25th 2018 I had my staples removed. I remember it not hurting as bad as I thought it would. But I had one suture start to pop out of the incision on my head! The nurse removing the stitches pulled it out and said sometimes that happens, that usually they dissolve but when they don’t our body pushes them out. So weird. That wasn’t the only time, I think I had four or five pop out eventually!!

She pulled them out for me and I think one or two fell out on their own.

Next post will be about when the radiation mask was made. I even have a pic of it :0

Please follow my blog if you haven’t already! Give my post a like and a shout out if you can !!

Have a great weekend,

Ashley

Getting home from surgery

Posted on by ashleyms27

Happy Monday!

My weekend was super busy, Chase (my son) had a cough and runny nose and only had a half day day on Friday, so I kept him home from school. We had a mommy & chase day and I took him to see the Lego Movie 2 at the theater. We loved that movie!! and then chase by Sunday was THROWING UP. SO he’s home from school today, and I have been cleaning the house and doing laundry.

Sorry about the many days without posting!!

Back to my cancer story..SO i had been released back home. Still bandaged up. I Don’t have a lot of memories of the first few weeks following surgery (hole in my brain guys haha). I remember getting home and seeing a welcome home mommy sign made by my kids. I remember feeling very happy seeing the sign. I immediately went to bed. My mom and hubby will tell you my energy was very low. They would have to wake me up so I would drink some water or eat something or take medicine. I was taking medicine about 3 times a day. My mom would be home all day with be because at the time my youngest, Aria, was not in school yet. My mom would come lay in my bed with me and we would watch TV. She said my language was still pretty limited. I would only respond with one or two word answers. She made sure to talk to me though, so thanks mom 🙂

Again my memory is not great of this time frame but most of my memory is how helpful my hubby and my parents and my bestie Kelly were with everything.

I had to go downtown and have everything looked at about 2 weeks post surgery and make sure it all looked good.

The main nurse for Dr Chandler took off my bandages and we got a look at how my staples looked and some care instruction for my staples.

Doctor came in and told me they did the biopsy on my tumor and to their surprise it was a grade three anaplastic astrocytoma. It was cancerous.

Now if you don’t know about how they rate brain tumors it is different from other cancers. Grade 1 & 2 are benign brain tumors while grade 3 & 4 are cancerous brain tumors.

My doctor said it was barely a grade 3, they must’ve caught it very very early. My emotions were sort of gone at this point like i said, I was still so tired and so out of it. Not my normal self. I just remember saying “okay”.

My husband didn’t seem scared to me he seemed tough. Only recently did he confide to me that he was scared out of his mind when they told me the news.

They informed us that I would be doing radiation and chemotherapy.

Now my son had only seen me with bandages on, and I was going to come home with a bunch of staples on my head. My mom talked to chase about what I would look like. He asked to see a picture, which my hubby sent over to her. He had a tough reaction, but it was smart of him to ask to see because I had no idea he even noticed it at all when I got home.

staples

I was now on a whole new journey, not just recovery, but beating cancer.

 

Ashley

Surgery & Recovery

Posted on by ashleyms27

Happy Hump Dayyyyy! Wednesday for people who don’t know…but hard to imagine anyone doesn’t haha.

so back to my surgery story! I figured I would ask my mom and my husband to write a little about what that day was like for them!

First up, my mother, Patricia:

It’s hard for me to put into words my emotions the day of Ashley’s surgery. Trying to sleep the night before was impossible, my baby is having her brain cut !! Until this night I think I had tucked that reality away. I chose to focus on how to help my daughter by taking care of her children and home . This was my way of avoiding the terror and heartache I had inside. Ashley was so brave and strong so we all had to be too!!

We ( Dave, Ryan, Kelly and myself )got into the car that morning to head to the city, not much talking was happening. What sticks in my head is that when we finally got to go back by them, she was so calm and had that sweet smile I have been blessed to see for so many years.

Ashley & Arthur had such strength that day at that moment.

We decided to go get food in us while she was taken back and the process of putting her under was happening. We could then be back at the waiting area before they started. So many many hours of waiting was ahead . We all spread out but would check in with each other. Dave did lots of walking, I was unusually still and didn’t want to talk much. I was receiving lots of texts of people praying for my girl. My mind was still but racing if that makes sense. I felt as though I was holding my breath!! You could see the strain in all our faces. I was thinking one thought on repeat since her surgery was scheduled…” please don’t take another child from us !” Please don’t take Ashley from her brother, husband, children , family and best friend!! The surgery took longer than they told us so now I am in a panic! It was so very late at this point so Dave said to me “ we have to go get some sleep “ Mary ( Arthur’s mom ) had to go back to work the next morning which meant I needed to be there for the kids by 8 ish that morning. I had to try to sleep but all I wanted was to see my baby!! Ryan told me he would text me updates as he was staying with Arthur . I told myself that Ashley needed me to make things go smoothly for her babies so I had to suck it up and leave. I have never wanted to be in two places at once so bad in my life!! What a strong and beautiful soul My daughter is…. she went through so very much that day and a long road was waiting for her

Second, my hubby, Arthur:

The day of the surgery was a long grueling day. We had to get over to the hospital first thing in the morning, yet she wouldn’t be having surgery until 3pm. For me, it was probably the longest day of my life. The waiting was a killer but I at least had family there to keep me company. I used work to try to distract me when she finally went back for surgery. The surgery itself was faster then I expected. She was done in about three hours. Dr Chandler came out in his scrubs to update us and ensured us everything went as planned. By this time it was around 6pm… but it wouldn’t be until after midnight when her brother Ryan and I finally got to see her. She took a long time to come out of anesthesia, and that wait was miserable. Stuck in a waiting room with a lot of other family’s waiting to hear about their loved one. The phone who’d ring, and someone would answer but it was always an update about someone else. Eventually her parents had to leave as it was getting so late. Ryan and I ended up being the only ones left for some time. When we finally got the call to go to her room, of course we went to the wrong one, in the other building. So we had to walk all the way to the other side up some elevators. When I finally got to see her it really set in for me just how crazy the surgery was. Before it never fully felt real. But seeing her all bandages up, a tube of brain fluid leaking out the side of her head into a bladder, the realness hit in full force. She was still out cold. Ryan and I sat and stared at her for awhile before realizing she wasn’t waking up anytime soon, so we walked across the street to the hotel and passed out. Longest day of my life. Easily the scariest

It is so interesting for me to hear how that day was for them. Everyone is so focused on the patient that the family can have a hard time dealing with what they were going through because they want to be strong for the patient. Also, to clarify my surgery was done by 6pm it took three hours, my mom didn’t realize I was done at six. They were just waiting for anesthesia to wear off. It took a long time! It really helped having my family around me and of course my best friend, Kelly, to help me feel strong going into surgery.

post surgery

So I barely remember much of the next two ish days.

I remember just being really tired and my family trying to make me drink water and eat food. I slept so much especially the first two days. I didn’t realize I had a tube coming out of my head to help drain the fluids. Probably for the best, because I probably would’ve been scared.

Then Friday they whisked me back to surgery again, I was so out of it I didn’t know really what was going on. My husband didn’t even know where they were taking me. He had to run around trying to find out where I was. I remember laying in the room before surgery and arthur came in and gave me a kiss. The surgery was to seal up the cut they made in my ear canal to help with drainage. I don’t remember much after that. Next thing I knew I was back in my hospital room.

So with brain surgery, the swelling gets pulled down by gravity.

post second surgery

I barely talked much while recovering in the hospital. I wouldn’t get released until Monday. I had a speech evaluation because I was barely talking at all. If i did it was a “yes” or “no”. A lot of the time, I would just give a thumbs up. I remember her asking me to name farm animals, and having trouble getting to five.

I didn’t understand how bad it looked at the time, like I said it was like I was in a dream. I just was so tired, and so out of it.

I remember family coming to visit me in the hospital, specifically my Uncle John and my Aunt Yvette. I remember a friend coming to see me who lived downtown. I was so happy to feel supported. I remember missing my kids so much, but being so tired that I couldn’t cry. I felt so happy that I would get to see them again, but missed them so much it hurt.

There was a Cubs game on, and I am a huge baseball fan. My mom said I was so “blank” that she was worried my personality or abilities were gone. I can’t remember the exact play but something good happened for the cubs, and I didn’t cheer, but I raised my fist in the air excitedly. This moment gave my parents and hubby hope that I was myself in there still.

I wish I could tell you how I felt in the hospital more, but after brain surgery your brain is operating so slowly and memory is foggy. I knew I was going to be okay.

My favorite memory is walking around with my IV and holding onto arthurs arm. They wanted me to work up to three laps around the floor.

Also, when I was discharged from the hospital, my hubby and I couldn’t find our car in the parking garage and we walked around so much before we could find the car. haha i remember thinking “oh no, this is not happening” thankfully we found our car just fine haha.

 

until next time,

ashley

Surgery

Posted on by ashleyms27

Hey! Happy Monday guys!!

I want you to know I am probably going to have set days that I post after I get through my cancer story of the past year. Also, that all of my posts wont always be about cancer. I will vary the topics!

SO where we left off was learning that I would be having surgery to remove a benign brain tumor. I woke up nervous but not scared that morning. We had to leave pretty early in the day to head downtown. I had to have a MRI done and couldn’t eat anything since dinner the night before.

I remember getting in the gown and hospital socks and and almost shaking. Probably from hunger a little bit, but also from nerves. This older woman sat across from me, and as I have social anxiety sometimes I try to avoid talking with random people. I looked away from her, but she still said, “Hi, How are you?” and I said “I’m doing okay, how are you?” She told me about her medical history, more than I wanted to know, but her demeanor was so nice and calming. I didn’t feel as nervous while talking to her. I opened up to her about my upcoming surgery for later that day and she had such encouraging things to say. She said that I seemed very strong, and that I could get through this. A nurse came in the waiting area, and called out my name. The woman sitting by me wished me luck and said she would pray for me.

I wish she knew how much help she was for me that day. I don’t think I would have gone into surgery as calm as I did, without here help.

MRI was pretty boring, then they led me to a hospital room in the surgery ward. I had to hang out there until they were ready to take me back for surgery. My husband was there with me. My mother in law was so helpful to watch my two kids so my parents could come up and see me before surgery. Also, my best friend since I was like 13 (known her since probably 11 though!) came downtown to see me and sit with my family while I was in surgery.

Nurses Came in and out checking vitals and having me get in a new gown (one from the surgery ward). Various doctors came in preparing me for what was going to happen.

I had little circles placed on various spots on my head. (Shown in picture)

I asked my husband to take my picture, I wanted him to document this experience. Again, feeling like surgery wasn’t the only hurdle I would be facing.

My parents and brother and my best friend all gave me a hug. They told me they loved me, and that they would see me after.

When the nurse came in, Arthur (my hubby) kissed me and said things I don’t remember specifically. Definitely that he loved me.

I remember feeling calm as they rolled me into the surgical room. I met all the nurses who would be in the room/assisting with the procedure. They moved me onto the surgical table. Much of this is a blur.

I remember the huge tv screens. It said my name on them. I felt so nervous at this point. The time was coming. THIS could be my last conscious moment. I started wondering about the kids. Thankfully this is when they put the breathing mask on me to administer my anesthesia. They had me take a few deep breaths, and count backwards from twenty.

and that is when I think I blacked out by 12.

 

Ashleypre surgery

Dr Chandler

Posted on by ashleyms27

Hey everybody!!

So I heard great feedback from my last post and I am so happy to hear people are enjoying it!

So my next big piece of my cancer journey was getting to the diagnosis of a brain tumor.

Dr. Chandler reviewed my previous ct scan and mri and spinal tap from the hospital stay. He asked me questions about my symptoms. He recommended we do a specialized mri, that would tell him if it indeed was a tumor.

So when I go back to do the mri downtown for him, I was shaking with nerves. I again had the negative feeling of dread and knowing something was wrong. So this mri they gave me headphones and asked me what music I wanted to listen to. I believe I said Aerosmith but they told me they couldn’t do artists it had to be like a genre or something like that. So I said classic rock. It helped calm me down a little.

This mri last TWO HOURS. Waaaay longer than the regular mri. It was difficult to hold still for that long. Towards the end I reallllly had to pee. We saw the doctor immediately after.

You get taken to this room that isn’t like a normal room you go in at the doctors. It has a couch, business cards for cancer doctors. I was NERVOUS. It felt like hours in that room waiting for the doctor to come in and talk to us. The doctor came in and sat down and I knew it wasn’t good news. He said “so Ashley the mri showed that what they saw was indeed a tumor. But it’s not lighting up like a cancerous tumor would. It’s in a dead space on the left side of your brain and I would like to do surgery as soon as possible to remove it.”

I of course asked if it was necessary, he assured me it was. I had read up on benign brain tumors and usually people wait it out to see if it grows. But he was against that.

And we got it on the books for April 11th 2018 (I wanted to wait until after my daughters birthday which is April 2nd to do the surgery in case the worst happened)

I walked out of this appointment feeling validated that something was wrong, but hopeful that the doctor was right and that it wasn’t cancer.

Until it turned out that he was wrong.

Stay tuned,

Ashley

MRI & Spinal Tap

Posted on by ashleyms27

Hey again!

So, some feedback I received about my cancer post was that I should delve more into specific parts of my cancer/brain tumor story and not just make it “info, info, info”. I should tell you about my feelings and experiences more in depth.

I completely agree, thanks babe (my hubby lovingly gave me this advice, little sh** hahaha).

So like I said, towards the end of 2017 I was starting to miss work more often 1) to go to doctor appointments. End of 2017, I learned that I have Rosacea. Rosacea is a skin condition, that makes my cheeks very very red. Sometimes it looks worse than others. This diagnosis from the Dermatologist is what ruled out lupus aside from the Rheumatologist not seeing the evidence she needed to diagnose me with lupus. 2) I was getting sick very often with colds, and pretty much whatever went around in my classroom. (I taught in the 2.5-3 year old classroom) 3) I have two kids and my youngest was going to the daycare I worked at & and my mom helped me a lot when my kids got sick to watch them so I didn’t have to miss work, but if she was sick or busy and my kids needed to be home and my husband who makes more than me cant miss work usually, then I stayed home. I always put my family first, and it hurt me with work.

So understandably, my directors literally gave me a note at my review that said “less absences”. Which, let me clarify, yes it sucked, but they need somebody who will not miss often. My coteacher,  RARELY missed a day. We don’t really have substitutes like public schools do, so it takes a lot of shifting around when a teacher is absent.

SO, in January 2018 when I went to the ER and was admitted overnight and taken by ambulance to a hospital I had to miss at least one day.

I get to the hospital and they take me to the room, not too long after they take me to the mri. Let me tell you, if you haven’t had an MRI, they are crazy!!!!

It feels like they are taking you and putting you in a space tube. Or a coffin. Normally, places will give you headphones because the machine is very loud. They only gave me little earplugs and had the table go right into the “tube”. It also reminded me of being in a coffin, just laying there in the confined space.

Worst part, when they do a brain mri, you have to keep your head completely still. Lucky for me, I did not have a cough and didn’t sneeze (that mri at least).  This MRI took about an hour, and without music its HORRIBLE.

Like I said, sssssssssuuuuuuuuuuper LOUD.

I mean like rock concert standing right by the amps loud. less enjoyable sounds. One of them literally sounded like a fire alarm. It went on for so long that I actually felt panicked like I was being left to burn in the MRI machine.

Also, halfway through they take you out and inject through IV contrast dye. It gives you a weird taste in your mouth. I say it reminds me of pennies. Yes, I am a weirdo who has licked a penny as a child haha.

My brain thinks super fast, my brain never stops going when I am awake. Especially being a person with anxiety!

My thoughts went straight to wondering why someone my age could maybe have MS or a tumor. I felt more like it would be a tumor (which is weird because it was!), and had to hold off tears because I was scared out of my mind. I had images of my kids crying at my funeral, and my husband having to tell them what happened. Dark dark shit.

I was so happy to go back to the hospital room when the mri was over! They tell me that they still see the inflammation on the left side of my brain and that sometime in the morning I would have a spinal tap.

The next day, the nurse gives me medicine, i believe it was a blood thinner, and i didn’t realize that she wasn’t supposed to give that to me. They said now my spinal tap couldn’t be done until the next day to allow the medicine to get out of my system. I was pissed, there goes another work day. That day was extremely boring, I decided to take a shower, in the creepy shower in a hallway. it was strange the nurse had to be in the hall waiting for me, I had to shower with my iv fluids still going. I felt so much better after my shower. I basically slept, was texting and chilling on my phone the whole time.

The actual spinal tap is FREAKING TERRIFYING. I have had two epidurals before during child birth, but that was injecting in medicine not taking out the spinal fluid. I had heard you get a terrible headache afterwards too. I had to control my breathing to where my spine was not moving, i was so uncomfortable. I felt the poke and you have to hold completely still. luckily it goes pretty fast.

I get wheeled back to the hospital room laying completely flat. My best friend came to the hospital to sit with me and if they  sent me home she would drive me home.

This is where shit gets real. Its about two hours, the nurse comes in says im being discharged that my spinal tap was normal. My head was pounding and I was nauseous. I tried telling them to give me more time to lay down before they sent me home. They refused said, that they were moving up a patient being admitted into my spot. They forced me up into a wheelchair and i was legit CRYING, the nurse didnt even try to comfort me. The ride home was horrible because every teensy little bump from the car hurt my head.

I had NO answer. They told me to follow up with a neurologist in a couple weeks, and that I was fine.

 

I also had to miss two more days of work because the doctor said I should try to lay down as much as I can.

 

More to come!

 

Ashley

My cancer story!

Posted on by ashleyms27

So, yes I HAD cancer!

So starting around 22, I started getting realllllly bad migraines. I couldn’t function when they hit me. I would cry from the pain and no medication would help. I mainly started to get them around my cycle which I was told that was pretty common. By 2017, I was a mom of two, working as a daycare teacher, exhausted. I thought my busy life might be the cause but sought out help from doctors. I was told it might be lupus by my primary care doctors and I then was told nope by a rheumatologist. So I was frustrated. I felt like I was losing control of my life.

So I got what I thought might be a flu bug in January 2018. Went to the er because I was having trouble keeping anything down. The nurse asked about my headache and if I get them a lot. I told them about it and the doctor recommended a CT scan of my head just because I had never had one done. My husband was furious, he thought it was unnecessary because I was there for the flu!

I understood that but told him it couldn’t hurt to check it out. So I went and had that done. I got nervous when the doctor came in and sat on the little doctor stool. She told me I was being admitted and had to take an ambulance (the er I went to isn’t in a hospital, it’s a medical building but not a hospital). I immediately asked why, and she looked at my husband and I and said “it’s no big deal, it’s probably nothing. Your CT scan showed what looks like inflammation on the left side of your brain. We want you to get an mri and have them watch over you tonight.” I had a gut feeling that this was a big deal.

When I got my mri done, the results showed the same as the CT. They weren’t sure but they wanted me to get a spinal tap done. So they said the next day I would have that done. Doctors reassured me there was no way this was a tumor. They wanted to rule out ms. They do the spinal tap (which SUCKS by the way!) and I laid flat for two hours. They came in said I was normal and LITERALLY forced me out of my room to go home. I felt horrible my head was POUNDING and I felt something wasn’t right. They said to follow up with a neurologist.

So about two weeks later I do another mri, and he reassured me again that there was no way this was a tumor and to redo the mri in a few months. I decided to read the mri report when I was at home later and I saw it said that it being a tumor was a possibility. I decided to look for a neurosurgeon who would do further testing to either confirm or deny my previous results. I live in the suburbs and so I found a doctor in downtown chicago. They did a mri that was specialized in some way that they could tell if it was ms a tumor or just inflammation. It confirmed that it was a tumor. They were sure it was benign. So we scheduled the surgery to have it removed, lucky for me it was in what the doc called a “dead space” (fun word choice dude lol). I’ll make another post about the surgery, but they biopsied what they removed. At a follow up appointment about two weeks after surgery, I was still pretty out of it, I was told that my tumor was indeed cancer. It was a grade three anaplastic astrocytoma.

That’s where my cancer journey began.

Ashley

My name is Ashley

Posted on by ashleyms27

Hey there *waves awkwardly*

My name is Ashley. I used to love to write. Ive had a couple different blogs that just never stuck with me. Id write a few posts and my friends and family loved them but I never felt inspired. I missed the days of when I was a kid writing in my journals; usually stories about my american girl dolls. or in middle school and high school writing poetry and even starting a fictional story I would hope could turn into a novel some day.

fast forward to 2019. I am 27 years old, married, and have two kids. I have fought brain cancer. I have fought anxiety and depression most of my life.

SPOILER ALERT: I am done with chemo and my MRIs have been looking good. so that has inspired me to start this blog and really exercise my brain with writing like I used to.

 

This is just the beginning. Ill talk about various topics about motherhood, anxiety, cancer, marriage, friendships, working out, healthy eating, etc.

 

hope youll stick around!!!

 

Sincerely,

Ashley