February 2020- Nov results and scans to come

Hello! :) It’s been a while. Time to get you updated on my last scan and what’s to come. 

My last scan was just before Thanksgiving. This time I had Kent, Alyssa and the babe with me! We stayed at Alyssa’s  aunt’s house and everything was great! I had been on my oils, herbs and chemo meds. After having good results at the last scan, I was excited to hear how these ones went!  Unfortunately there was growth in the brain, including a new spot trying to start. The lungs though, were great. No growth. I also had a PET scan, which it had been two years since my last. Luckily, no new areas to watch. It was hard to hear about my head scan though because I had been so hopeful, and that seems to happen often. I go in hoping and expecting one answer and I hear another. Sometimes it works the opposite though! I may go in expecting bad, and I hear good. I guess that’s what I’m hoping for this time around. I’m expecting not so great news, but maybe I’ll be surprised. 

These crack me up (Kind of)- I’m getting
Injected w something that needs
To be in a metal container and
The techs are decked out in
Protective gear. 

Took little breaks to feed and change. 

So nice having her to cuddle

Kent worked on the ride

Little hunny gettin burped

At the last scan they talked to me about starting radiation again. This one is called proton radiation and it only effects the bad cells and not the good. But it’s also 6 weeks long, not offered around here anywhere and most people still end up with a feeding tube. That tells me that it is not any less intense on your body. Detroit and Mayo are the closest.  I really wasn’t up for doing that just yet.  The last round was horrible, took MONTHS after for my mouth to heal, and I still have major issues thanks to radiation. I also have a new problem with the left side of my jaw hurting when I eat or sleep. I can’t get in a position that doesn’t hurt my jaw. I can’t open my mouth much without it hurting. And any time I bite down on something, it hurts. I think it’s due to my jaw being so uneven and the right side is titanium. So is the left just worn out from overcompensating or is there a new growth? 

So these past 3 months, I’ve been on top of all my meds - Didn’t skip any chemo, took a few oils differently then last time ( I had read that some cancer areas, you need to get your dose differently and mine was one of those kinds),  stayed on my herbal supplements, etc... I am hoping that this helped slow any from growing. If I need to look into radiation again, then fine. But I wanted one last chance to see if there was any change. 

Oh, and some other news I got a while back, Dr Kassam is no longer at my hospital. We don’t know yet where he went, and I’m sure he has a non compete to follow. I keep googling his name, but so far no results. I’m okay without him while I don’t need surgery, but if the day comes that I do - I want Dr Kassam. So we will keep looking and see....a few days after that, my Grandma died.  It was definitely a tough time! And this was right around my last scans too. 

When I was 22 months old, I had a brain tumor removed. Luckily at that time it wasn’t cancer. I had an MRI when they first came out, and the doc said surgery was like a piece of cake! (I recently found some photos that I thought I’d share.) My great Grandma brought up that surgery until the day she died at 94. She would talk about how scary it was, and what a miracle it turned out to be.  I went back for scans until I was about 12. I had an MRI but also a test where they glued wires to my head and I needed to sleep during that. I struggled napping always so I remember my dad would take me to a midnight movie, then wake me early to go get doughnuts. That helped me fall asleep! After that, since they had all been clear, I was good to go. I think, everyone should be able to get a yearly scan though. Wouldn’t so many things be caught sooner?! Maybe I would have caught mine before it got too far, maybe I wouldn’t be struggling all these years.  Just some food for thought... (is that how you even say it? Lol) 

I love this pic 

I had a nice swollen eye back then too!

My cute shaved head 😂

I’ve just been exhausted. Life is tiring. Looking beyond the cancer, I’m def blessed. I have a job I love, awesome kids, amazing family and friends. But the cancer puts a big damper on everything. I’m happy and sad at the same time. Taking down the Christmas tree, I’m thinking to myself - will I be here to put it up next year? Watching my sons last hockey game (he has one more but of course I’ll miss it due to my scans) - will I be here to watch him play next year?  I don’t tell people these thoughts, but I have one similar to these - almost every day.  I wish I could pause everything, focus on my health for a few months, (I’d do the radiation, find holistic approaches, focus on everything I put into my body, etc.) then hit play again. But I can’t. I have a house to run and kids to take care of. And of course any chance I have to be with them, I am. 

My sweet and awesome Mom and I head down in the morning.  She just retired a couple weeks ago and as she said - “I have nothing going on, that’s what’s wonderful about the retiree life.”  I’m ready for it to be over with. My anxiety has been crazy the past 3 weeks waiting for them.  I tell myself that it’s all good, but my body knows different...  I’m ready to hear if there was change, ready to hear about their thoughts on radiation. I have a trip I want to plan in May, I have girls asking about prom hair, but won’t let myself book anything until I have answers..

So here we are, just killin time for one last day, then I’ll get the scans tomorrow, and on Tuesday,  the answers I’ve been waiting for. And hopefully good news. 

My Gram and I 

Two days before my next surgery - May 29, 2017

Tomorrow I leave for my next surgery. I need to pack for the kids and I still but with the last surgery being so close, I think it'll be pretty easy to remember what to pack.  Some bags didn't even get unpacked! And last time I packed everything that I needed - there wasn't anything that I wish I had brought but didn't. So now, I just have to remember to pack the same things as I did last! Haha

I am not sure how I feel about having this surgery. Part of me is ready to get it done and hopefully not have to worry about surgery again for a LONG time. I've become very used to hospital stays and recoveries so I don't mind that I have to have another. But, then the other part of me, wishes I didn't need to go in for another surgery. I wish I could just keep the healing process going.  This means I will be taking a few steps backwards..

 I am definitely not healed but I can camouflage it to a point now.  My incision is looking great and the pain is going down. The swelling is a lot less. My cheek is a drop puffy still but my doctor said it is going to look a little "chubby" for a while until the muscle settles into its spot.

One of the few times I left home

 My eye still does not close and that is hard to deal with.  It is blurry all the time. It makes a lot of things difficult! Driving, reading, watching a show and just looking around! I am constantly trying to clear it but it's impossible to do since it doesn't close. I have to be very careful wiping it also because I might scratch it. And looking at me, you can see when I blink that that eye is slow and does not close all the way.  I am very self conscious about closing my eyes! Sometimes I forget that it doesn't close all the way and people can see it isn't closed even though my eyes both feel closed to me. I had a massage the other week and I kept my eyes open the whole time. Haha. I wasn't gonna lay there with one eye open.

 I have a lot of 'nerve pain' on my neck and chin. It feels more like pins and needles but it's a constant feeling. Last time I was on a medication that helped with the nerve pain but I have decided to try and go without it this time. It is a very hard med to ween off of and I don't want to deal with that again.

The incision on my neck is tight. Every time that I turn I can feel it pulling and if I keep moving my head too much it gets sore. I can't have anything touching it either or it starts to hurt and feel uncomfortable.  A t-shirt even bothers it. So I usually always have a tank top on.

What a difference two
weeks can make!

Scabs are gone!

And then there is the right side of my face. I can move my cheek a LITTLE bit! That is the first progress of movement I have seen. It started about a week ago (two weeks out of surgery), and it moves a bit more now than it did then. No eyebrow or lips moving yet. If I make a small smile with my mouth closed, the right side moves up a little. I am not sure if it is the lip muscle moving or the cheek muscle that is pulling it up. If I pucker my lips, or try to smile, it doesn't work yet.  And that is the only movement I've got at this moment.

Trying to pucker my lips.
Right is doing nothing. As you can
 see the right eyebrow is down too.

The two things that I wish most, is that my eye would start closing and that my lips would start working. Out of those two, I'd pick my lips. I still need to use a straw to drink. And I need a fork for anything I eat. I tried to eat a piece of pizza the other night without one and I bit my lip pretty hard. So back to the fork I went! A few days later I tried to eat a burger and bit my lip again. Giving up on that for a little while! I'll stick to the fork. I am starting to talk better, the first few weeks, some words were hard to get out because I couldn't get my lips to help me pronounce them right. Smiling is another problem. I can't do it and look normal. If I do try to, I use one hand to cover the side that isn't smiling! ugh.

Hiding the crooked smile. Haha

I did a lot of sleeping in the first two weeks. Now, I am having a problem falling asleep at night. So it is late when I do and then I want to be sleeping in. Some days I take a nap and others I don't. But now when I do, I make sure it is earlier in the day so maybe I can fall asleep at a decent time. I know going in for this next surgery I will be back to sleeping a lot so I won't have to deal with the sleep problems for a few weeks again.

I have gone out in public a few times. It feels good to get makeup on and get out of the house, but I can only handle a few hours at a time. My body is tired and my neck is usually hurting after that. I end up doing a lot of talking with people which gets hard for my mouth, and I seem to move around to the point that my neck gets sore. And, it isn't warm here yet so I have a jacket on and that is rubbing on my neck! Not to mention that just standing anywhere for a little while is tiring for me. Now is when I would start doing yoga, or being more active around the house to try and work up some energy but with surgery around the corner I really don't see the point.

My ear is still a problem too. I don't mind that the whole thing is numb, but it feels heavy on my head. And it is still completely blocked. No hearing out of it what so ever.  I think overtime the hearing should still improve. Sleeping on that ear feels very strange too so I usually stay away from that side.

What I have heard about this next surgery, it sounds like Dr Kassam doesn't need to open my neck up again. That is a relief for me. The head surgeries are easier to recover from.  I hope that going in for this surgery, doesn't bring all of these healing nerves back to the beginning of the healing stage. This neck surgery is by far worse then the other surgeries. (Minus the infection surgery).

In a previous post I had brought up that the corner of the titanium plate behind my ear hurts. Since I will  be opened up for surgery anyway,  I'm going to ask my doctor if he can fix that area. I think if the corner is bent in a little, cut off or just filed down - the pain would go away. Sounds like a simple fix to me, right!?! It still hurts to sleep on that side, wear a hat or headband.

My parents and I will head down Tuesday morning and at 4PM that day I have a CT with the fiducials again. And then Wednesday morning I need to be at the hospital for 5AM and surgery is 6:30. Same as the last one which the time worked out perfect for me. I like going in so early, I don't have to sit around at all waiting until its time to get to the hospital. I feel like the prep time flies by and before I know it, I am in the operating room and going into lala land!

My cousins Ali and Maren have set up a meal delivery for me. It is very convenient the first few weeks out of surgery. The site is called Take them a meal (.com) and the password is 0521. I had to make very few grocery runs (usually had someone else run for me since I can't drive for a few weeks after surgery) and I had to put zero thought into what I was feeding the kids! It was super nice and made things a lot easier for me! I would have the table set and the food ready to go when the kids got home off the bus. We would eat right away and talk about their day. It was great!

My birthday was a week ago, I wasn't up for going out to dinner but we went to my parents and ordered pizza. It was prefect and all that I needed this year!

Birthday Dinner

The past few days have been a little rough for me. I am prepared for surgery and all. I know I need to go in again and then that is it for a while. (We hope).  But I am just struggling with this slow recovery process. The facial nerves that don't move at all are an adjustment. I am a patient person but this takes SO much patience! In a week, the improvement I see is very little.  The thought of going back to work and struggling to have a conversation with my clients isn't appealing. The energy that I don't have is hard too. How am I going to stand all day?!? I know I will start out with just a few hours a day, a few days a week. But it still seems a bit overwhelming. And when I am tried, the muscles in my face slack even more and it makes my mouth and eye more obvious that they aren't working right. I did take another 6 weeks off from work for this surgery so hopefully by the end of that, I am feeling up to it!

And that sums up the recovery process so far! Tomorrow we are onto the next Milwaukee run. Hopefully I am gone just about a week.  And then it is officially time to heal, heal, heal!

It is time to check out of the hospital!!

Well the day is finally here! 38 days later!

Can you tell how happy
I am to have this on?

I left that evening and I was going to my aunts house to stay for a few more weeks to finish up my IV antibiotics and I still had many appointments and radiation to do before I left the area. I was nervous leaving, but my Aunt Liza only lived a few minutes from the hospital, so that made me feel a bit better.

The famous helmet.
How have they not come up
with something smaller
and easier to hide?!

It was time to face the dreaded helmet.

I felt so stupid wearing it. But I just kept telling myself that I knew no one there. And I didn't care about my aunt seeing me with it on. I did not wear it in the house. Only when we would be driving and in the beginning, I'd wear it shopping or eating out. My aunt was worried about me not having it on because I was in her hands at that moment. Luckily, I had a jacket that my mom brought down for me with a huge hood on it, so I could hide the helmet underneath it.

(When I came down in October it was still nice out. I had no jacket, just a sweatshirt and I had flip flops on. Its the middle of December now and snow is on the ground!)

Leaving the hospital!
Wheelchair and a helmet.

Eventually, I would take the helmet off when we would walk into a restaurant. My aunt didn't love that idea, but I wasn't gonna walk in with it on! I'd wear it in the car, and she would find a close parking spot so I would take it off right before walking in. I had to be careful because it was winter, but Milwaukee didn't have a lot of snow.

My first day out!
Makeup, my wig and helmet on!

My aunt had an office that became my room. I slept late everyday. Got up to hook up a new IV and then would go back to sleep. I would sometimes go hangout on the couch and watch a show or movie. I'd find something to eat. Then I'd go back to sleep! This was my routine many days. One day we eventually decided to venture out to lunch and shop a bit. Christmas was right around the corner and I had shopping  to do still. In the hospital I had ordered a lot of it though and had it sent home. That was a good time killer for me!

The last of the stitches are out!

I finally took my first shower.  6 weeks without one!!! My port wasn't hooked up to the IV so I didn't need to have that covered. And my head was now allowed to get wet, I had stitches still but I could just dab them after to dry them. The only thing I needed to cover was my Picc line on my arm. I used saran wrap and it worked pretty well. I'd still try to keep it out of the water as much as possible though. An infection could set in if it got too wet so I was terrified! Showering was exhausting! It was a lot of work for me and the second I got out I needed to go take a nap. As time went on the showers got a little bit easier.

The scar down my right
side is very thick from
being opened 4 times.

One appointment I had was to remove more of the stitches on my head. It was so not fun to get them out. The nurses kinda had to dig to get them out. It was a huge relief when we were done. There were a few still left that they could not get but they would make their way out on their own.

I celebrated the day that I hooked up my last IV! It felt so freeing knowing that I didn't need anymore of that. Every 8 hours I needed a new one hooked up.

My bag of antibiotics 

(To hook up the antibiotics I had to clean the tip of my IV with an antiseptic wipe, then use a syringe of sodium chloride to flush it, and then hook the antibiotic up. After it was done, usually about an hour, I unhook it, clean the tip, flush it again and wait until I need to hook up another.)

The nurse came the next day and removed the Picc line. As she pulled it out, I was amazed at how long the tiny tube inside me was! Like, over a foot long! I had no clue it was like that.  I could finally take a shower without covering up part of my body!

The last thing left was to get radiation. Luckily, we had decided to do the Cyber knife treatment. It is one couple hour dose of radiation instead of going in for ten minutes daily for 6 weeks! If I needed the 6 week radiation, we were trying to figure out where I'd go to do it. I would either have to travel 2 hours each day. Or I could go live with my brother in Appleton and go to the hospital right there.  We stopped worrying about that and decided we would make a decision when the time came. Turns out we didn't have to decide!

My mask. I was asked
if I wanted to keep it,
but I said toss it away!

So, a day before radiation, I had to go in and get my mask made. It's a sheet of hard plastic that gets dipped into hot water. The water makes it soft and then its laid over my face and pinned to the metal bed I was laying on. I had to stay like that for a while until the mask hardened. This mask is to keep my face in the exact same place the entire time I get radiation. It is a very precise machine and it needs to enter certain areas only. The mask is kind of used like a map.

Another plus to getting the cyber knife, is that I would end up using less radiation then if I had the 6 week radiation. Your body can only have so much radiation in a lifetime and by getting less, that gives me more radiation to use in the future if needed.

I could leave right after getting radiation and head to home sweet home! My dad was going to come down and we would head out the next morning!

The morning I was supposed to get radiation, the machine was not working! Ahhhhh! Why does this have to happen! They said they would call me once its running and they would get me in. I kept my dad posted because I didn't want him to leave work to come down and then not be able to go home. Luckily, later that day it was up and running! We decided my sweet Dad would come down the next morning, grab me and turn around and head home! Being a truck driver and not minding driving, it was nothing for him to make the long trip in such little time.

The cyber knife machine

When I got into the radiation room, they asked if I wanted to play music from my phone. Any kind I wanted I could have. I decided to pass. I would just lay there and probably pass out anyway! They had me wear comfy clothes, and gave me a med to help me relax. They then hooked up my mask.

There was no moving for me the next hour and a half! The machine was quiet. It moved around above my head, but that was all that it did. My jaw started to hurt after a while because it was being pressed on by the mask, but I just pushed through it because I knew it was gonna be over eventually.

When I was done, my face had marks all over it from the mask being so tight on it! They said I may have a headache later, and some people get a bit of swelling on their brain from it. I definitely had a headache the rest of that day. I took some pain meds and slept. When I woke later that night I did feel quite a bit better.

The next morning, my dad was there at 10AM! We packed up the car, I had acquired a lot of things while there! Went down the a duffel bag and left with multiple bags! My dad wasn't making me wear the helmet for the drive. It was going to be so many hours in the car that it wouldn't be comfortable. We hit some snow along the way though so I threw it on at that point.

Finally home with my babies!

That night when I got back, my mom had me sleep at their house. I wanted to go home, but she was insisting so I gave in. My kids had slept somewhere else that night. My brother brought me home the next day and the kids were brought to me after school! It was an amazing feeling to be back home and have my kids with me! Christmas was 3 days away. I had the kids for two nights and then they went to their dads. I was sad that I didn't have them, but it was probably good because I got to rest a lot then.

Christmas with my family.
As you can see, I still have
a lot of facial swelling

In the past year, the kids had gotten so good at letting me rest. We hung out in my room a lot. Shaya would always ask me to play babies with her, even if I didn't want to, she would demand that I do! And one day, after being sick for quite some time she told me she was gonna go play babies while I nap. It was kind of sad realizing that she knew she better not ask me to play and to let me rest. I am so lucky to have such good kids. Rease is a great helper around the house. He helps his sister out a lot and helps with the pets too.  I was grateful that the kids were old enough to understand that I was sick and being away or napping is what I had to do and not what I chose.

Christmas with my kids was a few days later, but we had such a good time! We were very spoiled that year. Our electric company, UPPCO, chooses a family every year to buy gifts for, and they chose us. We had the gifts from my nurses, too. We were amazed and so grateful for everything that we got. I loved that the kids were being spoiled. They deserved it for sticking through such a hard year with me.

 Left is before chemo,
middle is after,
and right is after surgery and radiation!

My next surgery to put the titanium plate in was set for May. In the meantime, I was to take it easy and recover. I felt like I was looking better, but looking back at it, I still had a lot of swelling that needed to go down.  I had a checkup a month after I got back and it showed that the radiation had helped to shrink the piece of tumor left by my carotid artery! We were all so happy with that news! I started going back to work at the end of March. I would do only 3 hour shifts 2 or 3 days a week. I was so tired when the shift was over. My body was not used to being on my feet all day.

Easter morning in Florida.
The beginning of no wig or hat!!

We took a vacation with all of my family to Florida in April. Almost everyone in my immediate family was there. We had such a great time!

May was approaching really fast. I was very excited to get the plate in but, of course, super nervous about another infection setting in. I was wearing my helmet sometimes. Usually only when I would drive. I always joked that I was going to paint it and put a pair of goggles on it so it looked like I was heading to the ski hill. The area where the plate was going is soft. There is scalp, and then brain. You could see my brain pulsing through my skin. It didn't feel weird, but it was the reality that my brain was right there and not protected at all. I was worried that flying may be hard to do with the pressure being built up, but I couldn't tell a difference. And going through metal detectors, everyone thought that they would go off as I went through, but I don't have metal in my body just titanium and that doesn't go off when going through!

All of my family that was in Florida with us!

I was still on my meds. One was a seizure med that I had been on since last May and the other was the med to help calm the nerves in my face. I still could feel my face being crazy, but it wasn't nearly as bad as it had been.  My mouth was still numb on the right side and same with my lip. There were some other numb areas on the right side of my face, especially one near my chin, but other areas were getting a little better!

Eating was hard but I had gotten more used to it. My jaw was still off from being put back together with titanium. Because of the numbness in there, it hurt to chew on the right side. To this day, I only chew on the left said and will probably have to do that forever. My mouth doesn't open very wide either, so certain foods are hard to eat. Especially anything really crunchy! (Corn on the cob is out of the question. I cut it off and eat it with a fork.) Foods that are really cold, like ice cream, hurt because my nerves are so sensitive. Taking my pills everyday, sometimes I'd think I had swallowed them, but they would be sitting in my cheek on the right side and I had no idea until a horrible taste started in my mouth and then I'd look in the mirror and see the pill still sitting there.

I kept progress photos of my hair.
The top left is in September,
top right is beginning of November,
bottom left is December and
bottom right is February after I colored it brown.

Since the sinus surgery, I noticed that my taste wasn't as good as it used to be, but I didn't sneeze nearly as often as I had before. I couldn't tell that my breathing was any better though either.   Before my October surgery, I felt like I had a bad smell inside my nose and it was always really stuffy. I had to blow my nose so many times in one day.  My snot was always green. When I woke from that surgery, I could instantly tell that I could breath better and the smell was gone. My doctor said that it was being caused by the tumor. He had cleaned everything out from the inside and it felt and smelled so much better!

As my hair was growing back, I started to have fun with it! When it was about 2 inches long I colored it to my level of brown but a much warmer and prettier color! I got bored of that fairly quickly and decided to be a blonde! I eventually got extensions put in on the right side to help hide the area where I didn't have a skull. It was sunk in a little bit and I felt like it was so obviously looking that something was wrong. So when my hair was short, I never wore it without at least having a hat on. If I didn't have a hat on, then I had my wig on. But when I was getting close to head to Florida I knew I had to do something because it'd be too hot to wear a wig or hat down there! So the extensions gave me more of a style and they also cover up the side I didn't want people to see.

This is in the end of February
when I colored it blonde.

I was nervous to go without a hat or wig, I had one on my head for 7 months by this time! I knew Florida was a good time to venture off without one though since I'd again be somewhere that I didn't know people except for my family. The amount of curl in my hair was insane! I've always had curly hair, but more of a wave. Between my natural curls and the chemo curls, I had the tightest curls! When I got to Florida, it took a few days of styling to understand what I needed to do. I had never had hair that short in my life! But thankfully, the stylist in me figured it out! I felt naked and weird the first day with no hat on. But each day got easier and easier for me.

The rest of my hospital time. End of November - beginning of December

Thankfully, that was the last surgery I had during this hospital stay.

My eye never did get swollen again. It slowly kept going down and returning to 'somewhat' normal. I started to put a little more makeup on some days. I still didn't get up and walk around very much.

yum yum!

Every now and then, I figured I should probably clean up. So, I would go into the bathroom, use bath towels to wash up and since my hair was starting to grow back, I'd sit on the toilet and shave my legs! My skin was so dry from being in the hospital, though, I hated getting it wet! I was so itchy and constantly loading on the lotion. I was allowed to take a shower if I wanted to, but I would need to have a baggy on my head to keep it from getting wet, a baggy on my arm to cover my Picc line, and also a baggy on my chest to keep my port from being wet.

How the hell do you take a shower with all that needing to be out of the water?

Definitely sounded like too much work to me. Plus I wasn't in there to impress anybody!

My parents came on weekends to see me. Usually, they couldn't come together. My dad came on his own once. I like to think we had a good time visiting. But it was always so boring in there! I felt like I should be entertaining these people that came to see me, but I couldn't.  I slept a lot. We would talk about news from back home.

Loved being able to see them

On the weekend of Thanksgiving, they brought the kids down with them. It was great to have everyone with me. My brother Kent was there too. My mom made a lot of food and we bought the rest at Boston Market. Everything was awesome! We played a lot of board games. Eventually, I would get really tired and need a nap so my parents would take my kids somewhere fun so I could rest for a while.

Kent is the best
Brother and Uncle ever!
So patient and fun for the kids

This time when the kids came to visit, I wasn't in the ICU, so it wasn't as scary for them. The halls were normal, with a bunch of closed rooms. They also knew what I was looking like, much better then the last time they saw me. I had been face timing them often, also. They were just happy to see me this time! They both were crying when they had to say goodbye. It was so hard because we didn't have a date that I'd be home. We couldn't say "I'll be home in ____ sleeps!"

The talk of me being able to leave was starting to come up. I was torn. I became so comfy in my room, eating, sleeping and watching shows, that I didn't feel the rush to get out of there anymore.

It became my safe place. I felt comfortable there. I had my routine and my nurses that I got to know so well.

But at the same time, getting out of the hospital meant one step closer to being able to go home to my kids. The kids were doing okay without me though. They were also in a routine at my parents house. As much as I hated to be away from them, I liked being able to see that they were doing okay without me there. If something happened to me, they would survive...

My set up.
Shaya let me take her blanket
 in the beginning and
I kept it with me the whole time.

As I mentioned in an earlier post, I was told that I'd be wearing a helmet when I left the hospital. I absolutely dreaded that so I always pushed the thought out of my head. My mom would bring it up sometimes, but I'd tell her that they haven't said anything about it to me since the beginning. The fact that they let me walk around my room without one was actually surprising to me but I was not going to question it!

I actually had a nurse one day in the ICU that when he found out I didn't have part of my skull, he freaked out and absolutely would not let me out of my bed. He had to make all kinds of calls before believing that I didn't have a helmet yet but was allowed to get up. He could not believe it and thought it was unheard of.  Finally he let me up, but only to use the toilet in my room. With him in there. (Thankfully I never had him again.)

 Eventually though, the day came that my NP came in the room with the helmet. I took one look at it and wanted to run away. Hell no. There is no way I am going to wear that thing! It looked like a legit helmet without a face mask. She didn't make me wear it, so I threw it in a corner and never looked at it again. But in the back of my mind, I kept thinking that the day I leave here, I need to have it on my head.

I noticed that I was weak and got tired really quick whenever I got up to walk. I was losing all of my muscle. At one point a nurse weighed me (every couple days I was weighed on my bed) and I was down to a weight that I don't remember ever seeing. Not even in middle school.  I had a hard time believing it was true though. I could tell I was a bit skinnier, but not to that point. I always made sure I ate a decent amount each day, but its hard to be super hungry when all you're doing is sitting in a bed every day!

Each night I was still being woke up to get my vitals taken. They were good about letting me go 4 hours so I could get a good chunk of sleep at a time. The nurses would bring me water all the time and every now and then I'd ask for a pop as a treat!  Some stayed in the room and chatted with me for a bit. I hated saying goodbye because there was a chance that I wouldn't have some of these nurses again before I left.

I still had a few weeks of the IV antibiotics. The hospital got it all worked out so that the antibiotics got delivered to my aunt's house a couple times a week and a nurse would come in every few days to get my vitals and clean my Picc line for me. I was now okay with this and I was fine with staying at my aunt's for a while after I got out.

Throughout this whole time in the hospital, I had many MRIs. To the point that I lost track on how many I have had. I got to know the whole crew down there pretty well too. One guy, I see to this day and he remembers every time we were together. I was always wheeled in my bed down a few floors for the MRIs.

Sometimes, I felt and looked so awful that I just wanted to hide under my blanket. I'd just stare at the ceiling.  I was that person being pushed down a hospital hall that people look at with that sad face and are so thankful that it isn't them in my position.

Once and awhile, I'd have to wait in the MRI office with the techs before my machine was ready for me and I'd usually just curl up and close my eyes so I didn't need to make eye contact with anyone.

I had no hair, a swollen face, black and blue closed eye, stitches everywhere, and machines hooked up to me.

Besides the red toes that my aunt painted for me, you couldn't even tell I was a girl.

I like being able to see all of my old nurses and doctors now that I have hair again, no stitches and a non swollen face.

It's like saying, "Hello. This is me. You saw me at the worst time of my life."

Days in Hospital After Surgery #1

I was only in the hospital for two days. I thought that is quite amazing to have brain surgery and be out so soon.

I had very little pain. Tiny bit of numbness on the right roof of my mouth and a drop on my lower right lip. But that I could live with and was told over time it would probably improve.

Another side affect I was told about before surgery, is that my right eye was no longer going to cry. Going in through my nose was going to mess something up on the inside that made tears. My eye might get dried out a little easier and I'll just have to have eye drops on hand if needed. So far though, I couldn't tell a difference at all.

I am also not a crier.

The photo below, was a Sunday morning when I planned to meet my dad at church, I woke up too late to go. And for some reason, it really bothered me.

Maybe I just needed a good cry! I don't know.

I had to document my first cry with tears! The right has none flowing!

The only thing that had me worried the entire time was before leaving the hospital I was going to have tubes and cotton pulled out of my nose. I'm not sure why, but I was more nervous for this than anything else! I still had a strip of gauze taped to my nose to help keep any dripping blood from going anywhere.

So, the time came to get everything removed from my nose.  One of Dr Kassam's nurse practitioners came in. (He has 4 of them and they are all amazing. One is "assigned" to me, but I've gotten to know them all well.)

*My mom had to leave the room because she couldn't watch. My mom doesn't like the gory details about my surgeries.  Anything that she thinks is going to cause me pain she doesn't want to witness. My dad on the other hand, find things cool and interesting like me. Dr Kassam gives me the basic details on a surgery they did to me, but Dr. Corsten gives me a lot more details on what went on and I love hearing all of it! I find it all so interesting and amazing. So my Dad stuck with me in the room while the NP went to work.*

First she removed the tubes. That was nothing. I didn't even feel them come out.

Next, it's the sponge things. Ugh. This was disgusting. It felt like water was being shot up my nose and blood started pouring out everywhere. The sponges were 4 inches long and the whole thing was in my nose!

She let me take a little breather and hold a cloth up to catch the blood. I could feel it running down my throat. Then it was time to do the other side.

Here we go...same thing. Maybe a drop better because now I knew what to expect.

I sat with a few cloths for a while till the blood slowed down. I've never had a nose bleed so this was pretty strange for me. Next, I grabbed a mirror to take a look at me nose. It looked perfect. Well, as perfect as my nose is gonna look! But there was no swelling or anything! My Dad and I were shocked! Besides walking around with a box of kleenex to dab the dripping blood, no one would have any idea I just had surgery.

I was given orders that I can not lift anything over ten pounds, no bending over, no exercise, nothing that can cause pressure on my head. I also was to try not to sneeze or cough. The sneezing I was worried about because I felt like I usually sneezed many times a day! I luckily had no problems with this. It was weeks before I sneezed for the first time and it went great! No pain at all.

Tubes and sponges about to come out!

  

Here they are..

                                                                         Survived removal!

besides the little bit of crusted blood on my nose, you can not tell I just had surgery on it!