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.