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?

COMPLICATIONS... October 28, 2014

Ride home.

We left the hospital and headed for Bes' car. I was in a wheelchair being pushed to the car and I noticed my eye was getting worse again. The swelling was starting to come back even more. I had asked the nurse that was pushing me out if I should be worried about my eye. He said that its normal to have a little more swelling as you leave because I'm now off steroids which made a lot of sense. The steroids helped keep the swelling down. I took his word for it and off we went.

 Its about 40 minutes to Bes' house. During the ride, I'm starting to feel worse and worse. My eye is getting more swollen. I just sit in the back with my eyes closed.  I CANNOT wait to get there.

When we get back to the house, I am feeling so bad that I go upstairs and strait to bed. I don't even take the shower. I didn't eat either. Later, my mom brought food up to me. I ate and then tried to go back to sleep. I kept taking my pain meds, but it wasn't getting any better.

Getting worse, not better.

At 6 a.m., I text my mom in the other room and told her we needed to go back to the hospital.

No more waiting around. Something isn't right.

I should not be feeling this bad, six days out of surgery, when I had never felt this bad any of the days prior. My face was so swollen. It was spreading to my other eye and it was also going down my neck and past my collarbone. I can't even explain how I felt. Never I have a felt this way in my life.

Once we got a hold of one of the NPs she said we can head in to Dr. Kassam's office.  My eyes are closed the whole ride. I can't wait to get back to the hospital. I have a sweatshirt on and the hood is over my head.  I'm put in a wheelchair and we go to the elevator to get up to the doctor's office.

The elevator took FOREVER!

Then, we got lost. The doctor's clinic is being remodeled, so he was on a completely different floor. By the time we got to the clinic I was gonna lose it. I was so miserable. First, the nurse came in to see me and took my vitals. I had a bit of a temperature and I was relieved. I felt like that meant something was wrong and they wouldn't just send me home.

The most horrific photo of myself. 

Feeling horrible and never looked worse in my life. 

Amazed that you can go from 

looking like this to normal again. 

The body is amazing. 

Knock me out, do anything! I am in so much pain!

Doctor Kassam came in, he took one look at me and said readmit her.

Thank the Lord!

I'm brought back down to the neuro-ICU. My room was still open, so I was put back in there. They hooked me up to steroids, antibiotics and pain meds right away.

After an hour or two, I started feeling much better.  Dr. Kassam came in to check on me a little bit later. Afterwards, outside of my room, he was talking to another doctor. He told him that something wasn't right and his "spidey-senses" were kicking in. He wanted to bring me back into the OR in the morning and see whats going on. I was okay with that because I just wanted relief.

I was in his hands and at this point I felt like he was the only person able to save me.

Surgery #2! October 23 2014

Alright...surgery day!

We had the same routine as last time. Went down to Milwaukee and stayed at my Aunt's house. The night before surgery I had different tests done...MRI, blood work, all the pre-surgery stuff. I had to do my normal shower with the same soap scrub as I had used the time before. This time though, there was no hair to wash! I went to bed in my clean sheets and pajamas. In the morning I showered again and then I put on some clean clothes. Off to the hospital we went.

Our before surgery pic

I went though the same check in.  Weight, blood pressure, pregnancy test, scrub down with the wipes and put a gown on. She asked all the same crazy questions. I was hooked up to an IV again. This time, I told them we have a hard time getting the IV's in. By now I've figured out that the IV's used for surgeries are bigger and that's why they have a hard time getting them in my veins. I get an IV for dye injections during MRIs and we never have a problem getting those in. I also have my chemo port too. That is used for my IV's sometimes and it makes things easier because then my arms aren't full of IVs. The lady from the neurology team came and hooked up the wires to my arms, legs and chest again.

Then it was time to wait for the operating team to come and get me.

The nurses were the same ones I had the surgery before! All so nice. Usually, I get wheeled up to a waiting room just outside the OR as they do the final prep in the room before they are ready for me. It usually doesn't take too long and they give me some sort of med to start relaxing me.

In I go- to the operating room again, and now that I know the drill, it makes things a lot easier. I hop from the bed I'm on, onto the operating table. Untie the back of my gown. Put my head in the little cradle. This time, the anesthesiologist gave me the calming med, but I stayed alert a bit longer. I was chatting with all the nurses for a while. One nurse, I found out, vacations in the same town as I in Florida! I had a gas mask on, too. This is when I took a few deep breaths and out I went...

The ICU

...I woke and was back in my room. The neuro-ICU was a nice big room and one wall was made of glass and it had big curtains to cover it if I wanted.

I was groggy, of course. Could barely open my eyes. But my throat felt much better this time after surgery. I didn't have such a dry mouth and my stomach was feeling okay. My incision was covered with gauze. I had two tubes coming out of it and at the end of the tubes there were little bulbs. The bulbs were squeezed and it would suck out excess fluid. It didn't hurt at all, but I could feel pressure and hear fluid moving around as it happened.

I also had a 5 inch fat graft on my stomach. The fat was used to fill in areas of my brain. I had a muscle in my head flipped around to fill in areas where the tumor was, too. My mouth had a hard time opening. I didn't know going into it, but my jaw was taken apart to remove the tumor and put back together with titanium. The area around my eye was also put back together with titanium. They had to remove tumor from my jaw area, near my eye and nasal cavity. All was removed except for a little bit on my carotid artery. They couldn't risk getting any closer to the artery. My eye and right side of my face was getting more and more swollen by the minute. The eye was also turning black and blue. A few hours after surgery I couldn't see out of that eye, it was completely swollen shut. I looked horrible!

After surgery, before the
swelling kicked in

When it came time for me to eat, I struggled. The entire right side in my mouth was numb. I couldn't feel food in there and my teeth did not line up right in my mouth anymore. My jaw was a lot looser then it used to be.  I started eating only on the left side. I had to chew very slow. And the food needed to be soft because my jaw wasn't strong enough to bite down and my mouth only opened a little bit. It was a whole new learning process for me.

After surgery

That night, as I was trying to sleep (only on my back and on an incline) the right side of my face was going crazy. The feelings were so intense I thought it was hurting. The nurse was giving me pain meds for it, but that wasn't doing anything to help it. The next day when my NP came in I explained it to her. The only way I could explain it was that my face was going crazy. It felt like it was moving on that side. She said "kind of like spiders crawling on it?" Yes! That's exactly it. It feels like the tingles when your foot falls asleep and  spiders were crawling all over it. The reason for all of this is my trigeminal nerve was cut. The trigeminal nerve branches off from near your ear through the entire side of your face. Since it was cut, the nerves are trying to heal and that's why I had the crazy feelings and it takes time for that to go away. I was put on a med that were going to help my nerves calm down, but it was going to take a few days to start working. That was probably the hardest thing to deal with in the beginning. It was so intense that at times I could do nothing, but lay there and close my eyes. Or try to sleep to pass the time until the pills kicked in.

After it started opening 

The black and blue eye along with the drain tubes

I was also very worried about my eye. It was SO big and swollen, I didn't see how it was ever going to go back to normal. It was completely shut for a few days and then it slowly started opening. Each day it opened a drop more but it was still big and swollen along with that side of my face.  The doctors and NP's knew I was so worried about it so they sent in an eye doctor to take a look at it. He also believed that over time it would get better. I sure hoped so! The black and blue started to leave and my eye was turning pink. It was opening more around day 4 or 5 but the lid was still huge and dry. Eyelids are such delicate skin that I couldn't see how being so stretched and dry was any good for it.

How could it possibly look normal again someday?

I had double vision when I tried to see out of it so it was much easier to keep it closed for now. I was so homely looking!! There was nothing cute about my face. LOL!

People wanted to be coming to visit me but unless I was close to them I really didn't feel comfortable having them in there. I know I looked scary and the world didn't need to see me like that!

Fat graft on my stomach

After a day, the gauze was taken off so that the incision on my head could get air. The gauze was held down with little staples. The top was no problem getting the staples out, my head is numb so I can't feel it. The side near my ear ,I could feel, and the staples weren't fun coming out!

I also had gauze on the fat graft on my stomach. So the staples had to come out of there too! I wish the gauze had tape on it and not staples.  The nurses did a great job, but one was stuck on my stomach. The nurses kept working on it and no one could get it out. It was hurting, too! My NP came in shortly after to check on me and she got it out in no time.

I had little scabs all over my head. I was told, once they open you up, the scalp is pulled forward and pinned to your forehead to keep it out of the way as they work. The skull bone removed is called a bone flap. They then put it back in place with some screws after the surgery is over.

A few days after surgery

 The drain tubes came out after a few days. I was really nervous about them being pulled out. I asked for a mirror so I could watch as they pulled them out. I liked watching as things happened so I could be prepared.  When the first one came out, I didn't even feel it! The next one, as they pulled it out, was getting stuck on a stitch. Since my head was numb, it didn't hurt. I could just tell it was stuck. After a little bit of working on it, they got it out. Now the two holes where the tubes were need to be stapled shut. I had two staples put in each hole. I was nervous for this part again and a nurse asked me to hold her hand while another put the staples in.

I could hear the staples crunching as they went into my skull but no pain at all! The joys of a numb head!!

The first morning after surgery, I was asked to get out of bed. They wanted me to get up and try to walk. The ICU is a big circle. All of the rooms were along the outside with glass windows. The center of the room was the nurses station. I walked a little ways down the room. In the other rooms I saw patients that were completely out with tubes down their throat. I didn't see anyone else in there alert like me. I had a hard time seeing, though, because of my swollen eye, so  I didn't go far.

But at least I was up and at it.

My nurse had told me that if I felt like people were staring at me (which I did, but I figured it was because I looked like shit) it's because it's not common to see a patient walking in the neuro-ICU. So, the fact that I was up walking around was amazing to them. I had asked what most people were in there for. She said a lot had brain injuries. Some from strokes, tumors or accidents. It was really sad to see them. Some were young and others old. The younger people were definitely the hardest to see.

The day of surgery I had the catheter in. After that, there was a toilet in my room that swung out from under the sink. But I wasn't allowed to leave my bed without a nurse being there. My bed had an alarm on it. So, to use the toilet I needed to call the nurse and she had to stay in the room with me.

It was hard for me to accept not having my privacy. The only other option I had was going to the bathroom on the other side of the ICU.

So that is where I went!

I called my nurse, we unhooked all the machines, she walked with me to the bathroom and then stood on the outside of the door while I used it. I was not allowed to lock the door, though. One nurse I had, she would not let me go in there by myself. She insisted that she had to be with me.

That was in the morning and it put her on my bad list for the rest of the day! I could not wait until shift change.

I had so many nurses and almost all were great. A few I became really close with and many of them I had numerous times while I was there. It was always a nice surprise when they would walk in and I saw I would be spending another day with them.

I never was able to shower in the ICU. They don't have any in there. I had cleansing wipes that I'd use. I had a lot of the yellowish orange antibacterial scrub all over me still. Dried blood, too. It felt great to get that off. I also put a bit of mascara on my good eye and chapstick on.  It helped me feel a little more like myself.

Having no hair, a huge incision across my head and a swollen face...I definitely felt I looked nothing like my normal self.

After five days in the hospital, I was cleared by the physical therapist, occupational therapist and speech therapist. My eye swelling was getting better and all of my scans were looking good. They told me I was able to leave later that day.

It was exciting, but it felt so crazy knowing I was able to get out of the hospital already! I had to stay in Milwaukee for about a week. I had more appointments to be there for and needed to be near the hospital just in case we had a problem. So, about 5 o'clock that day, I put my clothes on for the first time in five days, wrapped a scarf loosely around my head and away we went!

I couldn't wait to get back to Bes' house and take a shower!

My brother took this photo. I covered my bad eye, but you could tell things were looking up! Leaving in a day!

Post-Chemo MRI and the next step in 'The Process' - September 23, 2014

After a few rounds of chemo, I went back for an MRI to see the progress being made.

I didn't have headaches anymore so I knew it was doing something! I was excited to see where we were at. I had the MRI and then we went to Dr. Kassam's office to hear the results.

The chemo did nothing. The tumor actually grew!

How frustrating is this? I lost my hair and felt like shit for weeks and it was All. For. Nothing!

The photo on the left is after chemo and on the right is before. You can see that it has grown larger

We are now stopping the chemo and going in for surgery. This time it is going to be a craniotomy. I was being opened up from the bottom of one ear to the top of the other. I had no hair so we didn't have to worry about it being shaved.  But since I was still weak from the chemo I needed to wait four weeks to gain some strength before having the surgery.

October 23 we are heading into surgery.

In Mackinac Island

At the Packer game!

In the mean time, I got to go home and have fun and feel good for a while. During this time I went to Mackinac Island, to a Packer game and a good friend came to town. 

I was prepared to come home after surgery feeling and looking like crap. So, I got my kids' snow gear bought for the year. I also got their Halloween costumes ready. I had a halloween party that I wanted to go to if I was feeling okay so I bought a costume with a fancy face mask so if I had a swollen eye, I can at least hide it. I've been looking at photos of people after craniotomies and a lot of them had a puffy eye. Some had bruising. Others didn't look so bad. Crossing my fingers I don't look horrible after it either!

The kids were going to be staying with my Aunt Marcia while my parents were with me down in Milwaukee.

I'd be gone about a week again.

Losing My Hair...

I knew my hair was going to go.

My nice long hair

The idea didn't really scare me. I was prepared for it.

The first week after chemo was fine. I noticed no difference. About 4 days into the second week after chemo, I started seeing more hair around me. Then, I would run my fingers through my hair and I would have a lot more in my hands then normal.

Each day got worse.

Cut many inches off and starting to thin out

I cut many inches off it just to start the process of it being gone. I bleached it lighter too. Then, it got extremely bad.

I had hair EVERYWHERE.

My pillow was covered. My clothes were too. I couldn't touch my hair or it would fall out. Definitely was not going to brush it. And to wash it would be horrible. One day when I was at work, I looked in the mirror behind me and all I could see was my scalp at the top of the back of my head. That was the day I decided it was time to shave it off. I was sick of having hair everywhere and it looked horrible. My wig came in that day so it was perfect timing.

That night, I had to bring the kids to their dad's. Afterwards, I had a friend shave my hair.

Last picture of me with my hair

Shaved!

I thought maybe I'd cry as it fell off.

But, oddly I felt relieved when my hair was gone. I was free from the falling hair. My wig was perfect for me. And it felt good on my head. I had spent many days researching wigs and spent a few hundred dollars on it. I wanted one that was real hair and looked nice. Especially when doing hair as my job, I wasn't going to walk into the salon with a fake looking wig on! My friend and I were staying at a hotel that night so I was perfect timing to try out the wig. No one knew me there so I felt comfortable wearing it.

After we used a razor and shaved it to nothing

My wig!

It felt so weird being bald! I had a hat on a lot because my head would be cold! Even sleeping at night I usually had one on. I wasn't scared to show people, but I wasn't going to walk around bald either. I wore a wrap sometimes, but I would notice a lot of people staring at me so for the most part when I was out in public, my wig was on.

And sometimes I wore a scarf.

Sometimes I wore a hat and hood

The hair on my entire body stopped growing. Now know what it's like for a bald guy to take a shower! Literally two minutes! Scrub your body and get out. Haha! It was really nice! I would do my makeup, throw on my wig, and out the door I went! I always made sure my makeup was on point because the chemo took the color out of me so I needed my makeup to brighten me up. Keep me healthy looking.

And help me forget the fact that I was bald.

A lot of people lose their eyebrows and/or eyelashes. I lost neither, which was amazing. I felt lucky for that!

But, 4 months after I finished chemo, I lost my eyelashes and my body hair slowed down. Once my eyelashes were out, they started growing back and so did my body hair. Every 3 to 4 months this cycle happens.  It has made me realize that even though I'm not on chemo anymore, some part of it is still in my system.

My hair started growing back about 2 months after my last round of chemo. It was exciting to see brown on my white bald head! Slowly, but surly, it was coming back!

My first time being out in public around people I know with my wig. Labor Day weekend.

Port. First Day of Chemo...and the Next Two Weeks Aug. 13 2014

My chemo route is a lot different then what most people have.

It is 5 days straight of chemo in the hospital. I was getting 3 different kinds and they were hooked up to an IV. One was only an hour, one was 5 hours and the other was 24/7 the whole time I was in the hospital.

So my mom and I stayed in Appleton at my brothers the night before, and the next morning I went into surgery for the medi-port to be put in.

A medi-port is a heart shaped object that sits in your chest with tubes connected to veins. It makes getting chemo and meds easier. Blood can also be drawn from it. I was nervous for this surgery because I was not going to be completely out for it. It went a lot better then I thought though. A lot of people doze off during this surgery, but I was so worried about feeling something that I stayed alert. I was in an operating room, my head was facing the left and a sheet was covering my face. I had a tiny hole I could look out of. I didn't feel anything after the IV was in and the numbing shots were given. I had one incision where the port was, and another on my collarbone.

After, I was sent to my room on the 12 floor in the "tower." The room was big and looked nice. A bit later, nurses came in all decked out in plastic outfits and gloves, and they hooked me up to my first chemo.

Here we go, lets puts some poison in my veins.

In the hospital, I never felt too bad. Some food sounded good and some sounded gross. Any time that something sounded good my mom would go out and get it. Certain foods I had while getting chemo where great, but I never want to have it again. The thought made me want to puke. Take Noodles and Co for instance. We had one across the road from the hospital and I LOVE pasta. I couldn't wait to get food from there.  My mom brought me some fettuccine alfredo one day. It was good, but when I was done, I never wanted to hear the name Noodles and Co again! Still haven't ate there since. I was nauseous at times, but they had some good meds to keep that at bay.

So antsy.

I was so antsy in there though! I was restless and puffy feeling and I couldn't wait to get out and go home. I wasn't allowed to leave that floor except for going up the the garden. To get to the garden, we would go up to the top floor and there was an indoor and outdoor garden.  It was beautiful! There were so many plants and flowers. My mom always tried to get me up there. She wanted to get me out of my room and walking. I went a few times, but I was satisfied with sitting in my bed. Some days I would be so crabby towards her. I was going crazy!

Taking a walk in the garden

I had a few different visitors. My brother and his girlfriend, Alyssa, came with such nice gifts. My cousin and her mom. My aunt, uncle, and cousins. It was so nice of everyone to come. 

I know it was hard too. What do we talk about?

I'm hooked up to chemo.

I have cancer in my head.

Last IV hooked up for that round!

The last morning in there, I was by myself and got up to go to the bathroom. I walked into the bathroom and I had a dizzy feeling, kind of like when you get up too quickly. Usually, I just close my eyes for a second, and then it passes.

This time though, I woke up from my IV beeping and I was sprawled across the toilet. I passed out!

First time for me.

I then went to the bathroom and crawled back into bed. I didn't tell anyone because I didn't want this to cause a longer stay in the hospital for me.  I was lucky I didn't hit my head or get hurt in anyway.

I was desperate to get home. It was late in the day by the time my last chemo ended, but I begged my mom to drive straight home so I could sleep in my own bed.

And that is what we did. I think it was a little after midnight when we got home. I wanted McDonalds on the way and it was delicious. I could tell the taste was a bit off, but I didn't think much of it.

The next day I felt okay. I was weak, but food sounded good so I ate a lot. The taste was still off a bit, but I tried to ignore that. I couldn't stand in one place. I would get sick to my stomach and get the dizzy feeling again.

By the next day, I felt like shit. Pure shit.

I was weak, tired, sweaty or freezing, and my mouth hurt. I had a hard time eating anything. I had to find soft, cold things to eat. And nothing tasted normal.  My aunt came over to give me a shot to help boost my white blood cells.  I slept a lot the next 5 days. I was constantly thirsty too. Two days later I had to go to the doctors to get my vitals checked and a blood draw to make sure things were okay. I did tell my doctor that my mouth was hurting so she gave me two meds to swish in my mouth. One of them had litocaine in it and that makes my mouth numb for a little bit and I tried to eat as much as I could in that little time! I was good at taking my nausea pills so I didn't have much of an upset stomach at all.

The reason I had a lot of mouth problems is because hair, nails and taste buds have a quick turnover of cells. They are the first thing to be affected by the chemo. My mouth hurting was a side affect of the drug I was on 24/7 while in the hospital, so it is not surprising that it affected me so much.

I always needed to be sitting or laying. If I was standing, I needed to be moving around. I just felt weak, gross and like I was going to pass out.  I went to church one weekend, and I couldn't even stand during that! I had to keep sitting down and I just felt stupid doing that.

The next 6 days were the same. Painful mouth and throat, only soft cold foods being ate, and a lot of sleeping. I now had to be very careful about not getting sick. We had moved Shaya to her bedroom because I didn't feel it was good for us to be in the same room. I also stopped sharing anything with anyone and and I wasn't kissing the kids on the lips anymore. I laid with Shaya every night until she feel asleep, but I didn't let her breath on me while I was in there. She had to be turned the other way. It was sad, but they both understood that I could get sick easy and would need to be in the hospital again. I did not get sick at all during that time. Focusing on not sharing anything with anyone, I believe made a big difference.

My wonderful family had a spaghetti fundraiser for me and I was not allowed to be there either. The fair was going on and the kids had to go with other people. Shaya was in gymnastics while I was going through chemo and it took all my energy to go and sit there for the hour she was at it. My friend was over working on my sauna many different days, so I sat in a chair outside and watched that being worked on.

Once the 6 days were over, I woke up the next day and I was feeling great. It was like a flip of a switch! I had another week of feeling good until I would be back in the hospital for another round.

I would go into work for a few days that week, and eat as much food as I possibly could!