Surgery day and the first few after - May 1st 2017

The night before surgery is finally here! The routine is the same as all the other surgeries - wash with a special soap, sleep in clean clothes and clean sheets, shower again with the soap in the morning. I had no problem falling asleep that night. We had to be up at 3:50 to shower and get ready to leave.  Before we knew it, it was 4:40 and out the door we went!

The soap. Prepackaged- a sponge on one side,
 scrubbies on the other and a blue little
 pick to get under your nails.

Off we go to the hospital!

When we got to the hospital I was brought back right away to get prepped. They took my weight, did a pee test, listened to my heart. Then they gave me a gown to put on and wipes I needed to scrub down with first. I never like these wipes. They are warm which feels good, but instantly my skin feels sticky and cool. BRRR! I get the gown on, hop in bed and the nurse brings me a warm blanket to put on.  She asked me all kinds of questions and then it was time for the IV. I told her, the big IV's don't go in so easily for me. She said there was a note of that in my file! First she wrapped my arms in warm towels to help get my veins to pop. Then it was go time. She got it on the first try!! I was relieved and I think she was too.

The lovely wipes. One
for each arm, leg, 
stomach and back.

My parents were brought back around now and a neuro team that hooks up a bunch of wires to me were in the room too. A few minutes later Dr Corsten came in, put an X on my right side and said he would see me soon in surgery. The anesthesiologist walked in and introduce himself and explained that he would be there with me the entire time. Then two cute nurses came in with pink hairnets on, and said it's time to go! She handed me my blue hairnet, said she should have brought a pink! I laughed and said the blue will be just fine!

Our pic before surgery that we always take!

We strolled into the operating room, I moved from my bed to the operating table, nurses introduced themselves to me, an oxygen mask was put on my face and I was out. That was by far the quickest I have ever been out. Next thing you know, the anesthesiologist was trying to wake me up. At that point, it is so hard to open my eyes. I mumble something to him and that is all I remember. I was moved to a recovery area for a while and then brought back to my room. I remember looking at the clock, it was 2PM. I also remember sleeping and waking myself up from snoring! All of a sudden after a few hours of that, I was finally feeling awake. Sometimes this is when I get nauseous. Or have a super dry mouth. This time I had neither. I felt very good, just tired.

When I was brought back to
my room after surgery

Shortly after this nurses came in to ask me questions and sign a paper. I needed help from my parents answering them because I was still so groggy! Then a PT came in and wanted me to get up and go for a walk. I was thinking this is way too soon! I assumed we would be doing all of that the next day! But I wasn't going to tell her no, so we did it. My parents and bro went down to the cafeteria while I did this. My legs were weak and shaky. I had to stand while she put a belt on me, took a seat to rest for a minute after that and then got up to do the walk. We did one circle around the ICU. I was tired but I did great and passed with flying colors! :) She had a few questions for me and after that she said I was cleared by PT and OT.

That first night I also had an MRI done. I fell asleep during it which can be very rare in an MRI because they are so loud! I usually have padding on each side of my head so I don't move at all but with all of the fresh stitches we decided against it. It is hard to stay perfectly still while sleeping! I did my best and the tech said he did not need to redo any of the scans, that means I was still enough throughout it all!

So I just thought I had a pill stuck in my throat... but now I'm not sure if I did. Ha. Does that make sense?! My speech therapist came in each day with different foods and would watch and feel as I swallow.  She started with clear liquids then thicker liquids and then something hard. She would have me use a straw, spoon and/or nothing. They wanted to make sure everything was working properly and I was using the right tubes for the right things! Well just now, I took the pill and I felt like it was lodged sideways. I was drinking my water but that didn't help so my nurse got me applesauce. Maybe the thicker liquid would push it down. Well, here I am ten minutes later, and still feel the same way. But it's confusing because the pill would have disintegrated by now right?! Hmmmm. I wasn't worried about it because it was just a pill, but it shows me that I need to be very careful on what I do eat.... just in case that decides to happen again! I think the increase of swelling on my neck is pushing on it so it makes swallowing more difficult right now..

This was the other morning in the hospital. Since then I have had many problems with my throat but I am now kind of used to it. Every time I swallow my throat feels weird. Like something hard or scratchy is in it. Sometimes it gets so dry that I feel like I can't swallow! And now before I take a pill I make sure to swallow a lot of water first to get everything moving correctly. This morning when I woke, my voice is barely here. Everything is weak. But my swelling is at it's worst right now, so every day ahead it should start improving and hopefully the throat issues will subside. And that I get my voice back soon!! How can I yell for my Mom without a voice!?!? Haha

The swelling started near my eye, and
worked its way down my neck.

The last evening in the hospital:

I'm kind of crabby right now. Tired because I can only sleep an hour or so at a time and I went too long without my pain meds so now I'm hurting. I was counting on my favorite medication, dilaudid, which is given through an IV so it kicks in right away. But the plan right now is that I'm leaving the hospital tomorrow so I need to only be on oral meds that I can take at home. To make sure I can manage the pain on my own. I totally get it, but I'm frustrated about it too. Oral meds can take quite a while to start controlling the pain.

My face is getting more swollen by the minute so my eye is closing more and more. Makes seeing hard. Dr Kassam said no steroids (which would help with swelling) because it increases your risk of an infection. And because of the nerve being messed with, my eye isn't working how it should right now. It blinks slowly, and does not shut all the way. So it's either dry or watery and it's blurry. Sometimes when I close my eyes, I put my finger over it to hold it down. I am one of those scary people with an eye part open while I sleep!

The right side of my lips -top and bottom- do not work right now. Will they someday? We hope so. Is it guaranteed? No. So that's a scary thought. I might not have a normal smile ever again. Even a little improvement would be okay. But right now it is VERY dramatic. Makes talking hard, eating hard, I can't drink unless I have a straw. I can't even lick my lips! Everything feels foreign to me. I try to make it move, but it just won't. I can't flair my right nostril either! Or move that cheek or eyebrow. I try to, and it feels like I am, but when I look in a mirror, it is not moving. Nothing is moving.

My crooked smile.  #8 is the parotid gland that was
 removed and #5 is the nerve that
had the most damage done to it. 

Everything I eat is on the left side. And yes before this surgery I was only eating on that side, but my lips were not numb before. So I can't suck on a straw on the right side, or use a spoon or fork on that side. I can't drink out of a cup because it'll pour down my face. No hard foods, because that causes pain in my jaw. It's a whole new world of getting used to.

Yes, over time parts of this will improve. But it's hard being in the moment and believing that will happen.

I have over 50 stitches in my head. My neck is very tender from stitches and the tube. I had the tube removed earlier and that didn't hurt at all but it is sore now!  My ear is draining blood, we aren't sure why, but just watching it for now. The lobe of that ear is numb and will forever be that way. But that I don't care about! Kent jokes that I can now get many piercings in that ear and not even feel it. Haha. True story, but I think I'll pass. Lol

The tube being removed. One stitch is holding it in place.

The tube once removed.
That whole thing was inside me.

My head has a lot of crusty blood spots on it and that is from being pinned into a holder for surgery. It kept my head pinned in the same place so there was no movement going on at all. Some of these spots are tender and others do not hurt at all. My hair is hard and nasty, must be blood and antibiotic cleansing soap. I plan to take a shower later, but that takes a lot of energy! So I am waiting until I feel up to it. I can wash my hair with baby shampoo. The stitches can get wet, but only from water pouring down on it. No soaking or rubbing that area at all. When I get out I can dab it softly with a towel to dry it.

My hair is pink from blood

I have two IVs and a blood pressure cuff. An oxygen monitor on my finger and 6 cords connected to my chest to watch my heart rate. I had a catheter during surgery but removed shortly after and a little catheter in my wrist to get my blood pressure and to draw blood from it during surgery whenever needed. My legs have the cuff things on them to keep blood clots from happening. The sticky fiducials were removed, but the marker circles were still on my face. A few of the fiducials I found in my hair! I have little scabs and dried blood everywhere on my face!  I have bruises all over my arms from the IVs and blood draws. I definitely look like a warrior! Haha.

Heart monitor cords on my chest

Oxygen on finger, IV on my wrist.

Bruised wrist from all the pokes.

IV in upper arm, bandage over wrist that had catheter in it.

Surgery went great and doctor Kassam was super happy about it. He removed it all! We have had zero talk of radiation or chemo yet but I'm hoping we can save that for a different time if needed down the road.  After surgery my Mom asked him if this was going to keep coming back and Dr Kassam said he didn't know, but that he isn't going anywhere. He will be here to help us. Today he came in to check on me and held my hand the entire time while he explained our story to someone who didn't know it. He has a special place in his heart for me! I feel so lucky about that. And every room he puts me in, is brand new and huge. This whole unit was made for him and his patients.  I couldn't be treated any better.  Everyone is truly great.

The neuro ICU has glass walls so the
nurses can see their patients.

Dr Corsten came in today too. He said Dr Kassam did an amazing job removing the tumor in a very complicated area. Dr Corsten removed the margin around the tumor and it all came back clean!  He explained that we did not need to use the thigh muscle because there was a muscle in my neck he was able to flip around and use. He thinks it will be enough to fill the area in, but that is something we will see over time. Once the swelling goes down we can make a decision about how it looks.  He explained that the lower facial nerve that moves my face had to be stretched really far to make room for Dr Kassam to do his job. They did not cut it which is great but this nerve doesn't like to be messed with at all so it isn't liking that it was stretched out. He said the upper portion, near my eye and nose, is going to slowly come back. Which nerves can take weeks to heal. But the lower area, near my mouth may not. All I can do is pray, pray, pray, that there is some improvement over time.

My mandible (your lower jaw bone) was removed to get to the tumor, a bigger portion than they had thought needed to be permanently removed. They added pieces of titanium to put it back together.

My parotid gland was also removed. I haven't got a lot of information on this yet, but it is a major salivary gland. There is another on the other side and smaller ones throughout the mouth area too.

When nurses and/or doctors come in, they comment on how they love seeing our happy room. We are all just sitting around chatting. I have heard this every time we are in the ICU.  My case is different.  We look happy, and are happy. The other rooms have stroke patients or another neuro problem and most are asleep with breathing tubes in.  It looks like we are the lucky ones, which we are, but at the same time, I am in here because I'm fighting a deadly disease. Where the others may one day heal from their problem. Hmmm.

It sounds like I am leaving tomorrow. Dr Kassam wants me out of here so I don't get an infection! He thinks the chance of getting one in here are much more than me being at home. We will go back to Peggy's and stay there. I have my own room, it's comfortable and her house is beautiful. Plus being there my mom has a partner. I do a lot of sleeping the first week after so I like her to have someone to keep her company. I know my Mom is worried the whole time, she tries to stay calm for me but I can see it is hard for her! She does great checking in on me and being my maid! My Dad had to go back home today. Kent was also here for the night so it was great seeing him! Both my Aunt Liza and Jaclyn and my Moms cousin have came by to visit too! There is talk of my baby bro Brendan coming to see us in a few days which would be awesome because he has not been home since Christmas!

 Kenny can be quite entertaining! Haha

Next Tuesday we will see Dr Kassam, and if all looks good we will get to come home! And then in a week we will be back down to get my stitches removed.

The worst part should be over, and the healing should start now!