Surgery for the Titanium plate! May 2015

So it is time for the plate to go in! I am looking forward to it so much! I am also full of fear that an infection may set in...

We had to leave two days early to head to Milwaukee. Both parents were with me and the night we got there I had to go to the hospital for an MRI. The next day, I had blood work and meetings with my doctors. When I came for an MRI a few months prior, I was looking at the business cards as I checked in. One caught my eye: Dr Rovin! Dr. Kassam had finally talked my Marquette doctor into come to work with him! So this surgery, was going to be done by Dr. Rovin. My surgery was scheduled for 10 a.m. the next day.

During the meeting the doctors moved it down to 1p.m. I didn't love that idea, because I like to be able to wake up and go straight to the hospital. Keep in mind,  I can't eat or drink anything beforehand. I warned my parents that I may be a crabby bitch the next day! Obviously, there is nothing I can do about it, though. So, off we went with my soap scrub for my shower process that night and the next morning.

I had to take out my extensions for the surgery and they were going to shave the front of my head. I had asked the doctors at the meeting how much they were planning to shave so I had an idea of what to expect when I woke from surgery. They said from the top of the left side of my head, down to my ear on the right. And it would be about 2 inches thick. I made sure to ask them if they could shave as little as possible and they agreed and understood! I was finally getting my hair to a length I could work with and now it was getting messed up! I had plans to wear a lot of headbands and I cut a strip off of many of my scarves to tie on my head to help keep it covered. I would put the extensions back in also so the side that was shaved was hiding under the hair.

The day of surgery, I woke pretty late. Luckily, that killed a lot of time! I took my shower, and watched a show. Before I knew it, it was time to go! I didn't even have time to get crabby! Haha.

Off the the 3rd floor same-day surgery unit. I get checked in, get asked all the questions, and get my port hooked up so I didn't need to use an IV. It was hard for the nurse to access it (a certain size needle goes in and a sticky gauze is put over it), but after trying a few different size needles, she eventually got it. Then it was time to wait for them to take me into surgery.

My brother Kent from Appleton came to town, so he was in the check-in room with my parents and I. My mom's cousin was there also! She had come a few other times to be with my mom during surgery too.
We seemed to be waiting for quite a long time to be brought back. I was starting to get antsy. A nurse eventually came in and she told us that the doctors were in a surgery that was taking much longer then they thought.

So we were just waiting.

I was getting crabbier and crabbier!

We were in this small room with a curtain for the wall. There wasn't enough room for my crew to sit in there with me. And I was starving!

Around 6 o'clock the nurse came back in and told me that the surgery was coming to an end but the doctors think that we should move mine to the next day.

Fine. Just get me some food please!

I was told I can go home for the night or get checked into a room. I picked to stay because I was already prepared for surgery, my port was accessed, I was checked in and I wouldn't need to do any of that the next day if I stayed there.

I had to wait a bit longer for my room to be ready and during that time my dad went out and got food. My mom's cousin had brought brownies, so I ate a few of those and my mom also went to the cafeteria and got me something little to eat. I was not so crabby anymore! They told me surgery would be late morning and I would text my family to keep them posted on when I was going in.

Right after surgery they had the
incision covered. (And stapled to my head again)

Once in my room, my family left and I went to sleep. I was full and tired. The next morning, when I woke up, I watched show after show to pass time. Before I knew it, it was noon and I still had no word of when I was going in. My parents and brother eventually came. My brother is great at trying to cheer me up and keep me busy and entertained. Finally, a nurse came in and told me it was time to go!

Into surgery I went. It was only a couple hours and everything went great. I had a harder time waking from the anesthesia. I was very nauseous and threw up a few times. My nurse was one of my favorite ones that I had when I was in the ICU for my long stay.  A few days after I had thanked her for being a rockstar at taking care of me and I apologized for being such a mess! I was lucky to have her because shortly after that she started school to be an NP and was taking some time off of work!

This surgery was probably the most painful one for me. The brain itself does not feel pain. It has no pain receptors. But the scalp does. The titanium plate was put in above the brain, right under the scalp. My eye was starting to swell again. That poor eye has been through so much! I am amazed it still works. I had blood and antiseptic in my hair and all over my face. My head was shaved exactly how they explained it would be. There was a spot right behind my ear that was really painful, but I wasn't sure why it was in that area.

The drain tube was removed from
the top of my head and two staples were put in.

It was such a relief that my brain was now protected! My mom liked to joke that "she can now sleep at night." I don't think it was much of a joke though! I was very limited at what I could do during that time.

 I'd go to my brother and son's hockey games and have to sit up very high and keep my eye on the puck. I did not go to a single Tech game, and the only high school games I went to were playoffs at the SDC. I know my Dad told my brother (who was sitting next to me) to be on the look out for me, and of course a puck came flying in my direction! My brother instantly threw himself in front of me! Haha. Gotta love him. One hit and I'd be a goner!

 I never went out during that time either. I obviously wasn't going to go out drinking, but even sitting at the bar, someone's elbow could hit me, or my chair get knocked by a drunk or someone fighting and I could hit my head. It wasn't a chance that I was going to take.

Sometimes I'd be rough housing with Rease and my dad would say "take it easy Val, remember you don't have a skull." Sometimes I'd say, "yeah, yeah, I'm fine." But I understood where they were coming from!

The helmet could be burned! I could have had a separate party just for this. I never wanted to see that thing again!

My birthday dinner

I only was staying in the hospital two nights after the surgery. My friend Meagan was driving up from Florida and she stopped in to be with me for a few hours. It was so awesome to see her!

I was so afraid of an infection setting in! The doctors reassured us that everything looked great and I was good to go. We were only going to my Mom's friend's house at the lake, so we would still be close by.  It rained the next few days so we didn't do very much. I slept a lot. My eye was getting better every day! It was amazing to see how quick I was recovering from this surgery.

My brothers graduation.

My birthday was the end of this week and my brothers graduation from high school was the day after. I did not plan on doing anything for either of them because I knew I'd look horrible for both. But now I was rethinking that.

I had a doctors appointment a few days later and we got the clear to head home! I ended up going to dinner with my family on my birthday and to my brother's graduation! His party was scheduled a few weeks out so that if we had any complications, we had time to get back.

I needed to go back to the hospital in another week to have my stitches removed. I was not looking forward to getting them out since it hurt all the other times!  My friend Joanne came with me and we made a night out of it. We shopped, ate, and relaxed! The stitches were hard to get out be we got most of them!  Now it was time to heal and no appointment needed for 3 months!! The craziness was now coming to an end!

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."

Surgery #4 - November 18, 2014

Here we go again!

Once I was back in my
room from surgery

This surgery should be pretty short. I was back in the operating room and what are the chances...I end up with the same set of nurses again! I think its pretty crazy. There are many nurses that work in the operating rooms and I always had the same ones.

My hair growth and the scar
once the stitches were out

I wasn't out for too long for this surgery. Maybe an hour or two. When I awoke, I was in the post-surgery recovery room.

Dr. Kassam came in and saw me shortly after. He said I could either go back to the ICU or I could stay in the recovery room for about 5 hours, so I have a constant eye on me, then could go back to my room.

I chose the latter.

This surgery was a bit more painful then the others. I had more feeling on the right side of my head then the top, so I could feel this one. They also put a new drain tube in on the side and that was the pain I was feeling.

The top of my head was looking great, though, and the stitches were out!

The new incision and penrose drain

My mom had just left two days before. I know it was hard for her not being there, but I was okay!

My two aunts were waiting for me when I got out of this surgery. I was on strong pain meds and in and out of sleeping for hours. Eventually, I was able to leave the post-surgery recovery room and be brought back to my room.

Fluid leaking from the penrose

I was happy to be back there. It had become my home away from home! I was starting to feel less and less crazy about needing to get out of there. The hospital had become my safe place. After a few weeks of having no problems, here I was back in surgery. This had helped me realize that I needed to be here.

When I was more alert the doctor came to my room and told me they had removed all the fluid that was inside. It was probably from the muscle and tissues that were healing. They took out the last penrose drain and put a new one in much closer to where the leak was so if fluid was trying to build up again, it had a way to drain out. The doctor said everything was looking good inside and healing well.

But, I was worried about my eye AGAIN. It was just starting to get back to a semi-normal look and now it was going to be disturbed from surgery once again.

I made it out of the ICU!

I left the ICU and moved to the neuro-unit on the sixth floor. At the end of the hall, were two rooms that were bigger then the rest.

They called them 'suites.'

A doctor that used to be there had them for his patients. I was lucky enough to end up in one of those! The room was nice and had a lot of space compared to the other ones. I now had to get used to different nurses. And on the ICU floor, each nurse has two patients. So if I rang for my nurse she was in my room very quickly. On the regular neuro floor, the nurses had five or so patients, so I could sometimes be waiting longer to hear from them.

As the swelling went down,
the area without skull
became easier to see

Luckily, on this floor I did not need to be hooked up to anything! (Besides my IV antibiotics. Those are 24/7.) And I had a bathroom with a shower in my room! I was allowed to get up whenever I wanted. No alarm on my bed! They also encouraged me to walk the halls. I did not do that too often. My mom would bug me a lot to do it. She was worried I wasn't getting out of bed often enough. Sometimes she would bribe me to go for a walk! I still had my vitals taken every couple hours, but that I could handle! Not having a million cords hooked up to me was SO nice! I was still in the hospital, but I felt like a free women!

The hospital food was only okay. I was getting really sick of it by now.

(My nurses told me about a secret menu, made for patients that are there a long period of time, that I could choose from. I used that a lot! There was a small pizza, grilled cheese, breakfast, and chicken strips on it.)

One day, I was eating a wrap (off the regular menu), I looked down and the wrap was full of blood! I had bit the numb side of my lip. This is now a regular for me. I accidentally bite it often, usually I can catch myself before I bite too hard on it though. (A year later and that lip hasn't improved at all and I don't think it will. They say nerves can take a year to heal. Maybe even longer, but that area has had no improvement at all so I don't think it ever will. I'm still on the nerve med and it has helped so much! I can feel the tingly sensation but its nothing like it was right after surgery. I notice as I get tired throughout the the day, the nerves feel worse.)

Amanda and Stacy!

My friends Stacy and Amanda came to see me for a night! It was great! They brought sushi and cute cupcakes. We had such a good time hanging out and catching up on life. It was amazing seeing people from home!

I had another friend, Joanne, that kept trying to come down and see me, but we never knew when I was having a surgery or leaving the hospital because we were pretty much on a day to day basis. Jo did so much at home for me, though! She was taking care of my house, she put up my Christmas tree and decorated for me. She would take the kids on the weekend to give my aunt a break. I couldn't have appreciated her more. She was doing these things out of the goodness of her heart. Not because I asked her.

Between my brother, Joanne and Amanda they were taking care of my dog. I am so lucky to have these people in my life that were so willing to help me. I got so many cards and gift baskets from people I know all around the world. I loved getting mail and it was so touching that people would go out of their way for me.

The nurses on this floor were amazing also! They would offer to bring me things when they came in the next morning. They also got together and wrote a huge list of their favorite shows because I was running out of ideas on what to watch next! I was home just in time for Christmas and they got gifts for my kids and I! Some days I didn't have my favorite nurses, but they would still come in and visit with me when they got a chance. It's crazy to think of all the relationships made in the hospital. I got to know all of my doctors and NP's much more then I would have if things had gone as planned. And I can't say there is a single one that I disliked. I was so lucky to have found this team of people.

I had a lady that would come talk to me about the IV antibiotic and figure out information on where I would be staying once I was out of the hospital. A nurse would have to come see me to take vitals, clean the picc line and deliver the antibiotics every few days.

I told her I was going to be going home.

She wasn't sure if that was going to work because it was so far away and if the weather caused the antibiotics to not get there...and she also didn't work with nurses at home either. I was almost freaking out at her.

There was no way I was staying in Milwaukee until I was off these antibiotics!

I was going home.

My poor eyelashes!

I had kids at home that needed their mom. I was still so antsy in the hospital. I was going crazy and crabby so often because I hated being stuck there. Its been over 3 weeks! Any time this lady came in, I didn't like our conversations. My mood went sour whenever I saw her. (And she was too chipper for me.  Haha.)

And here I thought
I was lookin great!
From where I was, yes,
but still so swollen.

My eye was doing so much better now. It still wasn't open all the way, but I could now see out of it and all the weird colors were gone. I still has some swelling on that side too but not nearly like it was the first two weeks. And my hair was growing more and more! One day my eyelashes started falling out. Like many at a time even if I barely touched them. I hated that it was happening, I love my eyelashes,  but I figured between all the surgeries and meds I was on, something was causing it.

After the dressing was removed,
before a new was put on. 

One thing I learned from one of my early surgeries is that the tape they use to hold the IV's down hurts when they remove it! After that, I started shaving my arms before going in so when they pulled the tape off it was painless. I get red really easy and I had tape all over me. Especially the Picc and Port. They both had their "dressing" changed every few days and the tape was thick and strong so no bacteria made its way in. Uggghh!

My mom was still here with me, but I was bugging her to go home. Luckily, her work was great and she was able to take time off to be with me. Here and there, she did work on her computer in my room.

My kids had been staying at my Aunts house this entire time! A week stay turned into a month! But they got into a routine and I think the kids really enjoyed being there. My cousins took my kids on as their siblings. Jill would do Shaya's hair. They all helped them with their homework. It was so great of them! My mom wanted to be with me and I completely understand how she wanted to be with her child. But I was okay there by myself. I had people around to come visit me and all I really did was sleep or watch shows. And I really wanted her to go home and be with my kids. And let my Aunt have a break! She finally decided that she would.

The weekend she left my cousin Alicia came to visit me from Detroit. It was SO nice to see her and spend time with her. It was like a change of scenery!  We did nothing but talk and eat the whole time!

My sweet cousin Alicia

One day while she was there I noticed the area around my stitches on the right side was more swollen then it had been.  Every now and then I would wipe a drip of liquid off my chin. At first I thought it was drool because I was doing that a lot from having the numb lip!! (There were times I'd wake from a nap and have a wet spot on my pillow. Or I'd be sitting with my head tilted and on my chin, going down my neck I'd feel drool! Food would be on my face and I wouldn't even know!) Finally, I realized that it was dripping from the incision. And then all of a sudden later that day, I had a constant stream coming down my face from it! I got a kick out of it and was saving every piece of gauze I used to catch it to show the nurse when she came in. It was a light reddish yellow color. Of course, it had me a bit nervous also because things finally seemed under control...but now we have a new problem.

All the fluid that came out

We taped me up so
I didn't have to keep holding
something on it, also check out my eye!

My stitches were also due to come out and I was worried about that because there were SO many across my head! I've never had a good experience with stitches. They always hurt coming out for me. (Later, I found out that I heal quickly, which is a good thing but not when it came to stitches!) They almost have to dig them out because I start healing over them.

My doctor came and saw me early Monday morning and decided we needed to go back into surgery that day! Luckily I only took a few bites of my french toast and then once I found that out I stopped eating and drinking. He also said he would take out the rest of my stitches while I was under and I absolutely loved the idea of that!

The next two weeks

Over the next two weeks I had many scans to check on fluid around my brain. I'm a pro at MRIs by this point!

My freshly painted toes.

I spent my days in bed. Every now and then my nurse would like me to get up and sit in my chair. I would for a little bit, but I preferred my bed. I watched Netflix and Hulu or slept. My mom was still here with me and her friend Bes came often. She would bring in the food she made.

My two aunts that live in Milwaukee would come visit, too. One night my Aunt Liza gave me a pedicure. It was so nice to have painted toes! During my time in the hospital I found out that she had breast cancer. She had surgery and all is well now. She was a couple months behind me on the chemo, hair loss and everything else that goes along with it! Its nice having someone else to talk to about things that most haven't been through.

The new Picc line.

I also had a picc line put in. My chemo port was being used and I had an IV in my arm.

I either needed more IV's or could get a picc line put in.

I chose that instead.

It goes in your upper arm and to get it put in was pretty painless. A nurse that has a full time job of putting picc lines in came to my room with an ultrasound machine and a rolling drawer with a lot of supplies. He had to sanitize the area and hooked my chest up to a bunch of wires to watch my heart rate. I had to keep my head to the left as he worked on my right arm.  He said he has done this so many times he almost has it perfected to no pain for me.

I first got a numbing shot. It stings for a short minute and then its numb. He used the ultrasound machine to find the vein he was going to hook it up to. He started putting it in and during the process he would keep giving me numbing shots before the one prior would wear off. Before I knew it, he was done and the picc was being used.

A drain tube, penrose drain
and hair starting to grow!

In the ICU, I was always hooked up to a heart monitor. I had the sticky wires all over my chest at all times. I also had a blood pressure cuff on at all times. If everything was on track the blood pressure machine only went off once an hour, so I would slip it off in between and set my alarm to get it on in time for the next time I needed my blood pressure taken.  I had an oxygen monitor on my finger. This drove me nuts. It was hooked to a cord and made it hard to do anything without getting tangled up. I had the leg cuffs on too. They kept me from getting blood clots in my legs since I wasn't moving much. I wore them sometimes and took then off at times too. My legs would get itchy from having them on!

So add the picc line, IV, and my port hooked up...I was attached to so many things! To go to the bathroom was a process because most of the cords had to be disconnected and the IV machine had to come with me.

Fluid that comes out of drain tube.
Emptied and measured daily

I had new drain tubes in my head again and also had a soft rubber tube. That one is called a penrose. After a little while, I had the two big drain tubes removed. No problems this time getting them out. Staples put in place again too. The entire top of my head was now numb so that helped a lot with them messing with it because I couldn't feel anything up there. The side was still more tender though.

Every day, my NP would come in and remove the gauze, look at my incision and we would discuss anything on my mind. She would ask what our goals are today. If there were any questions I had, she would get the answers for me. She was great! And she was having a baby so we would discuss that often, too.

Swelling is getting better.
Eye still swollen

 Like I said in a previous post, I became close with some of my nurses. One of my nurses, when she walked in for the first time one day, she looked at me and said, "why don't we have you sit in your chair, eat your breakfast and then I will get you towels, warm soapy water and a new gown to wear."  The thought didn't sound appealing at all, but after I did it, I'd feel a million times better.

She could tell by looking at me that I needed a pick-me-up.

Another nurse, she was there one day when I had an MRI and depending on the results would mean if I needed another surgery. We were so anxious waiting for the results. I couldn't eat anything that day just in case I was going back in. When the results were in, the nurse came with the news. She told us that I didn't have to have surgery and she had tears in her eyes! It was so sweet to see how involved they get.  It was always such an emotional roller coaster for everyone.

 It was hard to get a good nights sleep because the nurse had to come in and do a neuro exam every two hours. After about two weeks in there they would let me go 4 hours during the night. I would usually get up and use the bathroom and get some more pain meds and try to fall back to sleep. Some nights I had to watch a show or go on my phone for a while before I could fall asleep again.

Was so happy to see my kids!

Always hid that bad eye in photos!

 My kids were able to come visit me while I was in here. It was hard for them the first time they saw me.

They had to walk through the ICU seeing all of the other patients before getting to my room and then they had to see me with a swollen eye and wrapped head.

After they did some crying, they were okay and we had fun visiting with each other. They came and went from the hospital over the next day before they had to go back home.

About two weeks after surgery, I noticed when the gauze came off I had a brown head! It was so exciting to see my hair was finally coming back. Each day it seems like so much more. After a few weeks in the ICU, we seemed to have things under control. I was told I could move to 6KLM. It was the neuro floor.  I liked the idea of that, but would miss my nurses on the ICU floor.

Making progress!

Surgery #3 October 29

After surgery and no skull bone. 
Hard to tell its gone in this photo 
because I still had so much swelling.

Back into surgery I go.

It's later in the day that I have this one. I'm trying to be patient, but I just want to get knocked out and feel better.

This surgery was very different then the other ones. You have previously read the shower routine I go through before entering the operating room.

This time, it's been 6 days since I've taken a shower.

One bonus, since having chemo, I still have no hair on my body! But, as I was getting onto the operating table (with the same nurses AGAIN!), I told them I was sorry and I am embarrassed that I haven't taken a shower in 6 days!

The one nurse said, "Oh honey, you have nothing to worry about! You have no idea what we see on this table!"

We laughed and into la-la land I went.

When I woke, I was back in my room and my head was wrapped in gauze. I was already feeling better and my swelling was down. My right side and eye were, of course, still swollen. My poor eye. Its probably so damaged by now. But at this point all I cared about was going to the bathroom (no catheter for this surgery) and I wanted food. I had to use a bed pan and its the weirdest thing ever. Trying to go to the bathroom while laying in a bed is almost impossible to do. It just doesn't feel right! They won't let me get out of bed yet though. I had to go so bad that I accomplished it. Haha.

My Mom and Bes ordered me all kinds of food from the restaurant down the road. It was eggs, hash browns, crepes, soup and fruit! Keep in mind, I'm still only eating soft things. And every bite is super slow and I need to make sure that I concentrate on making sure my teeth line up right. Eating is now a long, slow process for me.

I needed blood transfusions
after all of my surgeries.

The doctor came in and explained to me that he found an infection on my skull bone. The only thing they could do was remove my skull.

Yes, you read that right.

My skull bone was removed. The area removed was from above my ear, to the top of my head. And from my eyebrow over to the back of the side of my head. The doctor was worried that he was going to have to remove my eye.

(Holy shit!) I'm very lucky that he didn't have to.

After this surgery, like my last two surgeries, I  needed to have a couple units of blood transfused. I am now to be on an IV antibiotic for six weeks. (Six weeks? I sure hope I'll be able to do that from home.) In the beginning, I was on a few different ones until the infection was tested and they knew what to use to treat it.

Swollen but not as bad as before.
Look at that eye!
The swelling had taken
over my other eye, too.

I was going to be without a piece of my skull for six months. They were not going to do it anytime sooner because they wanted to make sure I would not get another infection from surgery. I was to wear a helmet in the mean time.

A helmet?

I did not like the idea of that AT ALL. What does this helmet look like?

I was going to be a hermit for the next six months and do nothing if that's what I'm wearing.  My mom would almost get mad when I would say I'm not going anywhere. Not even to a grocery. But, unless you're the one that's supposed to have this helmet on your head at all times, I don't think you'd understand. People stare. It looks like you have something wrong. And you stand out in a way that you absolutely do not want to.

This was the hardest, most emotional day in my life...

The closest I have been to death.

I have an infection in my brain.

I'm on antibiotics for so long.

And I have no skull bone.

I am exhausted and sad. What the hell is happening?