6 month check-up Sept 20, 2016

Here we go again!

My Mom and I drove down the night before to my brothers apartment in Appleton. We went to our favorite restaurant, Carmella's. It's an amazing italian place. Go there if you haven't been!

After dinner we did a little shopping, and then went back to Kent's. He did some of my yoga poses with me, and I did some of his workouts with him! Felt good after being in the car for four hours and stuffing our self with food!

The next morning we headed to Milwaukee. We went straight to the hospital, found a parking spot near the top of the ramp and I got checked in for the MRI.

Back in the gown!

These pants crack me up!!
One size fits all!

I got brought back pretty fast, changed into my gown, waited only a few minutes and the guy I've had multiple times came to get me. We joked about all we have been through together. He then put a small IV in, took some blood to make sure everything was good for the MRI.

Then, into the machine I went.

It was a new machine with a little different set up, but overall was very similar. My MRI's are on a specific machine that takes very thin, detailed slices. I was tired going in, I think I napped but it is so loud in there it's hard to tell! I do have earplugs in, and padding pushed against my ears so it helps to muffle the sound.

The MRI was an hour and fifteen minutes. With about 20 minutes left he comes in and puts a dye in the IV, then we finish it up!

Once finished, I change back into my clothes and go find my mom. She usually goes out for a walk, and also gets some shopping in! We met my Aunt Liza for lunch. It was so hot that day so we went to an outdoor place to eat. It was probably the warmest weather I will feel for a long time!

Walking the skywalk

After that it was time to get back to the hospital for the results. This is when it all starts to hit me!

Will life go on the way it is or is everything going to get turned upside down again.

We walked the skywalk one more time. Up to the 6 floor we went.

Answers! We want answers!

When we got called back to the room, we waited about ten minutes...it felt like an hour!

My mom and I are both doing her breathing thing.

We are staring at the computer.

I'm getting antsy.

I wanted to get up and dance or something! Ahhhhh!!!

This is the worst moment of the trip always.

We hear the door opening up...in walks Dr. Kassam! He had a big smile on his face and gave my mom and I a hug. He introduced us to a new NP that was starting there. He had previously lived somewhere else and worked in the neuro-unit.  Two nurses that I've had before were also in the room with us.

First, Dr Kassam opens up my file on the computer, and starts explaining to the new NP our history together. He shows him a picture of the beginning, and is pulling up a picture from now.

(My mom and I are both thinking, "Whats the news!! How does the MRI look???" but we don't want to interrupt him either.)

He tells the NP how he was supposed to be going to Vienna to give a speech to 600 people, but cancelled it at the last minute to stay back with me during my infection time. Then he says, "By the way, your scan looks AWESOME!"

My mom and I have a huge sigh of relief!! Praise the Lord!!

We look at the scans, they look great. I ask him about the area we are watching and he said there is no change it all. And that they aren't sure if its cancer, or just muscle used to fill in that area. It could also be scar tissue from radiation.

On the left you see the white beast,
on the right, you don't!

He said, "I'm sorry, but I do want you back in 6 months".

I said that is perfect.

I just finished telling my MRI tech that I like the six months. A year is too long to go without one. I need the peace of mind and reassurance that everything is looking good still. And, if something ever did start to grow, I want to catch it sooner rather than later.

Then, Dr. Kassam is out the door. He had to get to his next patient. I was so happy we were able to see him, though, because at the last six month appointment he was in a meeting and couldn't see me.

We are then ready to go! The lady checking us out said I looked great and that she has been there since the beginning and saw me through every stage.

Then the appt is made! March 17, 2017.

Seems so far away, but before we know it, it'll be here!

Once we find the car - had to walk a bit and take the elevator a few different times, we got lost -  we realize we did not ask about my sinus issue or the corner of the plate sticking out! We were too happy about the news and had a one track mind. Haha!

I can see my ENT here at home though for my sinus problems, and I will wait until my next appt to talk about the plate unless it bothers me too much in the mean time.

Our schedule for these appointments are great, this time of year right now is beautiful and in March the weather is usually decent. At least the farther we get from home it is! With all the trips we have taken, there has never been a storm that we had to get though. Lots of heavy winds, a few hard down pours and fog, but we can handle that.

One time, my Mom and I had gotten great news, hopped in the car to head home and we were so excited that we were literally pulling out of town and the low gas light came on. We looked at each other and burst out laughing. We had forgotten to get gas!! Luckily there was a gas station not too far down the road!

Another time, when I had just finished a round of chemo, we got a flat tire on the FREEWAY! Thankfully, nothing crazy happened and we only had to drive a little distance and found a gas station with an oil lube and they took care of it for us.

And another time, I was driving late one night after the foundation dinner with Dr. Kassam, it was dark, the road was full of construction and all of a sudden right in front of me was a hard, plastic cylinder. I tried to swerve and miss it, but it was too late. It made a huge loud noise, I was all worked up about it, but everything seemed fine on the car - no lights turned on and it felt fine- so I kept driving. Half an hour down the road I could hear a weird noise. We turned the radio off and I asked my mom if she saw anything out the side mirror.

Bes' house is straight out of a magazine 

She did.

Something was flapping in the wind. OMG! So I pull off onto the first exit I see. Pull over to the side of the road and jump out to take a look.  Sure enough, the plastic trim that goes along the inside of the wheel well, is dangling! So here we are, in dresses, in the middle of nowhere, using our phone flashlight and trying to push that piece back into place! It's funny to think about now, but that night, it was not funny at all!! We were just driving back to Kent's and in the morning he got it pushed back into place for us.  A piece is still missing from then, but you can't tell at all unless you know what you're looking for.

Georgous!

The night after the test, we stayed at Bes' house again. As I have said before, its gorgeous, inside and outside. And it's on a lake. We went to dinner with my two Aunts and Bes. Of course we did some more shopping too! Bes made us an amazing breakfast the next morning, and then we hit the road!

This doesn't do the outside justice

My mom and I don't realize it at the time, but the week or two before my MRI, we are very stressed. My body wants to get all anxious, but I keep pushing it to the side and telling myself all is going to be okay.

I ignore that I want to freak out.

I pretend that I'm cool and not worried about it.

That night after the results, I slept the best I have in weeks! Eight hours with only waking one time!

I can breath easier. I am in a happier mood and I feel like the fog has lifted!

There is nothing to complain about in life.

The little things that I let myself get down about, don't bother me anymore.

Life is good.

Well rested after a good nights sleep!

August 2016

I am now waiting for my next MRI.

We are 3 weeks out and I was a lot less anxious this time.

But I am now ready for it. I have two bridal styles on separate weekends, and the kids start school, so I know the time will go by fast.

I need that reassurance that everything is still good. I also need to see my ENT, Dr. Corsten. I have had constant sinus infections for six months. I've tried two different antibiotics, but it's never gone for long. I always end up with side affects from the antibiotics too, so I'd prefer to hold off until I can see him before trying anything else.

My sinus details are gross, but I'm gonna talk about it anyway!

I constantly have a smell inside my nose, and at least once I week, usually 2 or 3 times, it's hard for me to breath and I can feel something back there, but it won't come out. It must mess with my nerves because it causes a zap and zing feeling to all the nerves on the right side of my face.

Eventually, I feel something break away in my sinus cavity and it starts to go down my throat. I spit it out onto a kleenex and its a hard, super dark green blob. It's gross. (But kinda cool in a weird way?) I think it all builds up back there and can't fit out of my nostrils, so down my throat it goes. I don't ever swallow it because I want to see what it looks like and I'm sure it's not good to be in my system anyway.

Sometimes I take pictures of it! Okay, most of the time. Every time.

For doctors to see. For my friend to see that finds it all fascinating. For my kids to see and make disgusting faces at it. Haha. Iv'e tried to show my mom, but she will NOT look at it. My dad did once, but that was enough for him. My friend Amanda, who finds it fascinating, gets a pic of every one. Sometimes even a FaceTime of it if its a really good one! (Hahahaha!) Got to find the fun in it right? Don't worry, I wont show you all a picture of it! It's not even gross to me anymore because I've been seeing it for months now. I hope we get this figured out at my next appointment. It'd be nice to not feel like I have a sinus infection 24/7.

I am now working six hour shifts, four days a week. Some days I need to work an extra hour or two. I am totally exhausted after those shifts. It's okay if it's every now and then, but definitely not an every day thing for me. When I am at work though, I work hard. I make use of every minute I am there. I usually do two colors at once, or an extra haircut during a color. I work like crazy for the six hours to get eight hours worth of clients in.

I still have all the numb areas I have talked about before. Nothing has improved since then. So, I think that where I am at, is where I will always be.

I've accepted that.

I was much worse in the beginning, so I'm thankful to be beyond that point. But I really wish it could have gotten better then where I am. I get self conscious about my eye. The shape is not the same as the other and the bone structure (titanium) around that eye is a little different then the other too. I know, for some stranger walking down the street, they would have no idea anything is wrong. But, of course, everyone is their worst critic, right? My vision in that eye isn't great either. I can't look out the corner of that eye or I see double. I do have glasses that I sometimes wear and they help for distance.  My lower right lip is a problem too. It doesn't like to move too much. And if I'm tired, that eye and lip, are even worse looking then when I am energized.

Not that I am ever REALLY that energized. I am always tired. I think it is a combination of being a mom (that's exhausting right there!), but also from all the brain surgeries, the chemo, and radiation, too. They say it can take over a year to heal from brain surgery. I can't help but wonder what having five brain surgeries in less then a year can do to someones energy. I hear from a lot of people who have had chemo and/or radiation that they are tired, too.

I have the sore spot behind my ear still too. That will never go away because its a corner of the titanium. I am going to bring it up to my doctor at my next appointment. I wish it wasn't there. But, I'm thinking the only thing that can be done is if they opened me up where it sticks out, and sanded or cut that corner off. I don't think my doctors will go for that...but one can hope! It would be worth it to me.

Eating is still the same. I only eat on the left side due to the right side being numb. I still bite my lip a lot, but I'm much better at taking pills. I don't usually have one sitting in my cheek! My jaw is so loose that I clench my teeth shut at night when I sleep. If I don't do that, then my jaw is pushed to the right and I woke up super sore. But clenching my teeth sometimes causes a headache and its not good for me teeth either! I try hard to sleep on my back but sometimes that just isn't comfortable!

I am lucky that I didn't have many side affects from the brain surgeries. Some people lose their memory, others their speech, some need to learn to walk again. I, luckily, had very little of any of these. I notice sometimes I draw a blank when trying to think of a word or someones name that I know.  More so then before. I know that this is normal for everyone! But they say people have 'chemo-brain' for a while afterwards. It could be from that. It could be from surgeries.

zero extensions! Finally all mine!

Towards the end of June, I was finally able to take out my extensions! My hair had grown enough on the right side to blend in with the rest. I keep cutting it because I actually like the short hair and I wanted everything to catch up so if I do decide to grow it out, there aren't any short areas. My bangs are getting there. They take longer to grow then the rest of my hair though. I have had wigs or extensions for 20 months!

And I am now free of everything! :)

When I was going through chemo, I could not stand in one spot without wanting to pass out. Doing my makeup and messing with my wig made me very tired or sick feeling and I had to keep taking breaks. So, I decided to buy a vanity for my room. To this day, I am in love with it. I make my coffee in the morning, and go sit at my station to do my hair and makeup. I think after looking so scary in the hospital, I enjoy sitting there doing my makeup and hair each day. I have a 'normal' looking face to put it on, and I actually have hair to style.

I think trying to look put together helps me to feel..."okay" everyday.

And I keep playing with my hair color, too. I now look at it as hair that can always grow back. So I shaved the underneath. I keep cutting the length. I try different colors. Which I would never do with my long hair.

Don't get me wrong, I miss my long hair.

But I don't think it actually has to do with the length of my hair. It has to do with the healthy and worry free person I was before I had cancer.

I will never be that girl again.

Yes, I am the same person that I was before...but now I worry each day that my cancer will start growing. I see things differently then before (more for the better). I do what makes me happy. I always say, as long as I am happy, and my kids are healthy and happy, nothing else matters.

I am so tired though.

Will I have a future with my kids?
Will I ever get married again or have babies?
Is it even smart for me to think of having any more children?
That is just more loved ones to leave the day I die.
Will I find that person that is willing to go into a relationship with someone who has cancer?

I know that anyone can die on any given day. But I feel like it is hanging over my head much for then it is for a healthy person.

The unknown is scary.

I know everyone has it..but I feel like mine is pretty extreme. I try not to think of it, and just live day by day...

...but it crosses my mind often.

Below are my worry free, long hair, 'normal' face days.

(I am super picky about my photos now though! 

Since having the surgeries, I usually cut out my bad side in pictures. 

Unless its a photo that is far away then I don't mind. 

But I always have to see the picture and a lot of times 

I ask to take another because I don't approve of it.)

This photo is days before
finding out about the mass

November 2015 to March 2016 Swelling, Yoga, Anxious, MRI

What happens in Vegas....

I had always said that in the Fall of 2015, if I was doing good and not needing any surgeries, I wanted to take a trip to Vegas with any girlfriends that wanted to come.

We had a lot of fun!

So, in the beginning of December, off we went! 2 of my girls from home, Crystal and Amanda, came with me. My friend Catherine, that lives in California, met us there. We had a blast and decided its something we want to try and do every single year! Not necessarily just girls, but a Vegas getaway with whoever wants to come! We will see if this happens...

Crystal and I had our phones stolen out of our cross-body purses that we were WEARING. The worst part of that, for me, is I lost a lot of photos from my surgeries. I think most of the important ones were saved, but not all of them were on my iCloud.

Yoga!

My next MRI isn't until March. It's been great not having any appointments or surgeries. I am starting to work more, too. I went back to work in July after my May surgery. I was only doing three days a week and 3 hour days. My body could not handle anymore. In October of that year I started doing yoga at least 6 days a week. I could tell my body was getting stronger. I bumped it up to 4 hours a day and then 5. A few weeks into doing yoga, my swelling at my temple went away! I really do believe yoga had to do with it. Yoga is good for your lymphatic system. I think just getting all the juices flowing inside of me helped to move the fluid around and spread through my body. I hadn't been so excited about something in a long time! I could part my hair in different spots now, wear my hair back off my face.  It was a huge relief for me.

Going in for the MRI

By January, I was getting anxious for the next MRI. I had not gone six months without one and I was ready now for the next. I knew time would go by fast so I tried to be patient waiting for it. When March finally came I was more then ready for it!

I went in for the MRI, and then walked the crosswalk once again. We were called back into the room, where we wait for the doctor. It is not an examining room. It's a room with a table that is flat against the wall, and rounded with chairs around it.

Staring at the computer...
waiting for results

There is a big computer there for the scans to be pulled up on. My mom and I sit there and stare at the blank computer. She does her breathing and I just sit.

Here we go again, that life changing moment.

So happy after good results!

The radiologist walks in and instantly tells us everything looks perfect! Then she pulls up the scan to show us. There is a little white cloud  around the area we are watching but she said that is from the radiation and its nothing to worry about.

I had asked if Dr Kassam was busy or could I say "hi" to him, but he was in a meeting. They tried to get him out, but he couldn't do it.

Dr. Rovin knew I was ready by four months for the MRI and asked if I wanted to schedule my next for four months out...or do six months and if I feel the need to come sooner I can just call. I chose the latter option since I knew I could change it if I want, plus I had now gone six months and there was no change.

We are actually at 14 months without a change! January 2015 is the first MRI after radiation and there hasn't been a change since then. September 2016 is the next time I will be seeing them!

After getting the result, we were sitting on a bench contacting our loved ones and I could see in Dr Kassam's waiting room, there was a guy with a helmet it on just like mine.

I wanted to go in there and reach out to him and tell him I had been there.

And you will get past this hard time in your life.

Summer 2015 to October 2015...Lumbar Puncture. Skin Cancer. T-tube.

My summer was pretty uneventful. I recovered from my surgery very fast. I wore headbands and wraps every single day to cover where my hair had been shaved. It was slowly growing, though!

I had to go back in the beginning of June to have a test to make sure I didn't have a cerebral fluid leak. My nose was draining clear fluids and I also had a fluid spot of swelling on my right temple that came a few weeks after the surgery. A CSF leak is a leak of brain fluid coming from the dura layer of the brain. When the titanium went in, the dura may have been punctured and brain fluid leaking out.

For the test,  I was laying on my stomach on a table with an x-ray machine above me. I had a lumbar puncture done (needle in my spine) and a dye injected. The table was then tilted so my head was lower then my feet and some x-rays were taken to see where the dye was going. I had to stay in the hospital for a few hours after to make sure I wasn't reacting to having the lumbar puncture done.

Dr. Kassam and I

The next day, we were told that everything looked great! There was no leak and the swelling on my temple would eventually "soak up" and go away. I also asked while there about a pointy spot I had behind my ear. It hurt to the touch, hurt when I had a headband on and hurt to lay on! Turns out that is a corner of the titanium plate. Since all was good, we got to head home! I had to miss the kids last day of school during this stay.

On August 25, I was invited by my doctor to a fundraising dinner. He invited a few of his patients and another doctor, that was attending, did the same. They both were going to speak at it. It was a fun time! My Mom came with me, we got to dress up and eat some delicious food! My doctor ended up sitting at my table right next to me too. We got to make small talk, and he got to see me all dressed up with makeup on and my hair done. He has only seen me at my worst, or in a hospital gown! I was really happy that we got to go and lucked out that he sat next to me too.

In the beginning of September I had a little pink spot on my forehead just under my hairline looked at. I had it for over a  year now, and it wasn't going away. It was a bit raised and was shiny like a scar. This was the only thing on my body that reacted when I was getting chemo. It scabbed up, but then was back after the scab fell off. So, since the past crazy year was over, I decided to have it looked at. (Along with catching up at the dentist and eye doctors.)  My doctor sent me to a surgeon here in town. He removed it and had it tested. A week later, I came back to have the stitches out and sure enough, it was basil cell carcinoma! Are you kidding me? He said after everything I had been through, he wasn't going to go back and remove more. We are just going to watch the area and see if it grows back. Had I not had a brain tumor, this would have been a lot scarier to me then it was.

On September 15th, I had a check up. This included an MRI to check out how the titanium plate looked and to see if there has been any change to the area where a bit of tumor was left.

I also still had the fluid swelled area near my temple. I was getting really frustrated with this because I finally had a normal shaped head after hiding it for 6 months, but I still have this and I had to keep hiding it. They said they were going to take a look at it this time. I felt like it'd be so easy to put a needle in it and suck out the fluid. I'd joke that I was gonna take a knife, and put a little slit in it to drain it. (Yes, I was that DESPERATE!) I was also getting my port removed the next day if my MRI looked good. I was really excited about this whole appointment!

So, I had my MRI, walked the crosswalk over to my doctor's office, and waited a few minutes for him to come in. This is when I get nervous. My mom does her heavy breathing. Whatever my doctor has to say when he comes in can be a life changing thing for us! We finally feel like life is getting back on track. Things aren't 'normal,' but we are trying to make it that way.

Dr Kassam walked in, and instantly told us all looks great! His radiologist showed us the scan pictures and everything looked so good. The little area is still there, but no changes have happened.

Yippeeeee!

Chemo port is comin out tomorrow! Now, the swelling? Dr Rovin, who helped put the plate in, decided that we should do nothing to the fluid. Let it be. It will eventually go away on its own. This made me sad. I had tears in my eyes. My mom was talking for me saying its okay and we understand. I had a hard time understanding because I didn't want it there anymore! I'v'e hid things on my head for over a year now! I want to stop hiding!

Before it was removed and after

The next day, I came back to have my port out. It was exciting, but I was also kind of sad to see it go. The port saved me from having IV's so many times. My entire hospital stay, I had the port being used to pump meds or antibiotics.  I'd have even more IV's in my arm if it wasn't for that. It would be nice not having a bump on my chest where it was though. Shay would try to sit on my lap and I'd have to shift her all the time so she wasn't laying against my port. The port is a sign of having cancer, so it being removed, is a big step in the right direction.

I wasn't put out for this surgery. Just sedated a little and a lot of numbing shots and pain meds given to me through an IV as they removed it. I get nervous for the surgeries that I'm awake for! Luckily, I felt nothing after the numbing shots. I had internal stitches and a lot of glue on the outside. I could not pick the glue off. I needed to wait for it to go away on its own. Once the numbing wore off, it was a bit painful, but after a few days it was much better. Even now, when I push on the area where it was, it hurts a little, I'm not sure what the reason for that is. It was very discolored for a while but it's returning to a normal color now.

Now that that was all taken care of, I do not need to come back for an MRI for six months.

Six months!

I have 6 months of living 'normal' life. Whether the tumor is growing or not, I will have no idea. The sound of this is great! I am also allowed to slowly ween off of my medications now. The first time in 15 months I will not be on a pill every day.

After my October surgeries, I noticed that my hearing wasn't very good anymore and eventually my ear tube fell out. So this time, we were putting a T-tube in.  It is more permanent then the other tube I had in.  This 'surgery' was done in Marquette and my friend Amanda brought me. I wasn't out very long for this, less then an hour. Then we did some shopping and eating before heading home! I could instantly start hearing better again too!

Pinned hair, no headband!

My hair was finally long enough in front to pin or twist into a bobby pin. I no longer needed to wear a headband! It was such an awesome feeling to be done with the wigs, head wraps, hoods, headbands. I still have extensions on the right side to cover the awful swelling, though.

I had heard from so many people about how strong I was, and such a good spirit I had going through everything. I loved hearing that and believe that I was. Going through the surgeries, I really was doing what I had to make it through. I didn't see any reason to have a negative attitude, what good would that do me?

It wasn't until summer time that I started having a hard time. I think now that things have calmed down, it was all really hitting me. I have cancer. I had a horrible infection that could have killed me. I have many uncomfortable face problems. I am exhausted. I always try to look at the best in everything, the infection didn't kill me. My cancer isn't growing at the moment. My face problems could be SO much worse then they are. For having a titanium jaw, eye and right side of my skull, I look pretty normal!

But I am human and, like anyone, I get down about these things. I have days that I don't want to get out of bed. Life is so busy and tiring. I wish I had someone to take care of me. But that is not the case. I am a mom and I have two kids to make a living for and take care of.  My kids are definitely what keep me going every day.

Thank God for them.

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."