First Few Days Back Home

Over the next few days, everything was too loud for me! After a year of having muffled hearing I had to get used to "normal" hearing. 

('Normal' is going to be something I seem to use a lot in this. What was 'normal' is no longer my normal, but its what I always try to get back to. For my kids sake...for myself. I was happy were I was in life. I just wanted to go back to that 'normal' life of mine. But it's a struggle. I want to go back to what was my normal, but normal isn't normal anymore.)

People chewed too loud. 
My car made weird noises I had never heard. 
At the gas station, trucks that went by with trailers were too loud. 
My kids talked to loud. 
I was constantly telling them to "talk quieter, close your mouth when chewing, drink slower so I don't have to hear it." 

I wanted to plug my ears! 

The first time I tried driving was horrible. I felt kinda dizzy, and my reaction time seemed like it was off...so after the first day trying (9 days out) I didn't drive again for a few more days. Then, I became comfortable with short drives.

I hated having to rely on people to bring the kids and I everywhere. I've always been an independent person and to rely on others seems foreign to me. There were so many people willing to help, that wasn't the problem, but it was just odd for me.


Things were going okay though. I'd been taking a lot of naps and bringing my box of kleenex everywhere I go. I still had no taste and I was worry that it was gone for good!

(Oh...and 2 days into being home, my cat decided to have four kittens on my bed next to me while I napped! You have no idea how entertaining this was!! Haha.  My kids and I loved having the kittens! They were so cute and fun. All were given to good homes too!)

My favorite! She was a blonde! haha

All four kittens- blonde,orange and two gray

They were so darn cute when they were teeny!!

Biopsy results day. 6 days after surgery

Ok. Today is quite nerve wracking. 

So many answers. I'm so excited to see the doctor, but also scared. 

Do I have cancer (praying to God every day that I don't) or do I not have cancer? Meds after this or surgery again? Surgery through my nose or my skull? Going home tonight or do I still need to stay here?

I don't mind any of those options besides the cancer. 

My babies need me. I am their life support. The 3 of us are very close. Shaya sleeps in my room most nights still. She also showers with me most days. (Lol.) We have our own little ways and routines.  Rease is my little partner. He is the man of the house!

My tumor seems to be in too difficult of a spot to remove it all. Many nerves (hense the numb face) and my carotid artery are right there. So it can't be cancer.  It needs to be something that some medication or radiation can get rid of...and we can call it a day!

We all know that whatever comes my way I am going to deal with...but I like to think that I am not giving cancer the chance to happen. 

Say a prayer,  wish me luck,  do a little dance. Whatever it is you do for good vibes, I need them today!

Update: so as my mom and I pulled into the hospital and drove up and down the entire parking garage to finally find a spot, I  get a call from my doctor's nurse saying the results aren't in.  Boo...not happy. We are scheduled for Tuesday at 12:30 now. 

We went inside to use the bathroom and decided to go to my doctors clinic office and make sure it was okay for me to drive the 6 hours home. In there the lady contacted the nurse and she said yes she hasn't changed her mind since I've talked to her a bit ago. Ok, I understand that but do you know how far home is from here?!  I told my mom 'lets just go home.' I was a bit upset with the nurses attitude toward us. 

Off we went and as we walked through the cross-walk that separates the clinic from the hospital, we ran into Dr. Kassam! I was so happy to see him! He told us it was okay to go home. He said the biopsy went out for more extensive testing.  

What the heck does that mean? Not sure what it is? They know its cancer and want to figure out more about it? 

Ugh. Great. 

Nothing like waiting at least 5 more days. So, we headed home, but at least we had the peace of mind that Dr. Kassam said it was okay to go.

First 6 days after surgery #1

We stayed at my moms friend Bes' house, about 30 minutes outside Milwaukee. My doctor thought heading home Sunday (which was our plan) was too soon. He asked us to stay until Wednesday when we had our next appt with him.

Bes' house is THE perfect house to recuperate at. She has a big beautiful home on a lake. Her 3 kids are graduated and living elsewhere so my Mom and I got the upstairs to ourselves. Bes is an awesome cook and she made so many amazing meals. The downside to that was my taste was going to be gone for a few weeks so everything I ate looked amazing, but I actually couldn't taste it.  My nose was still bleeding and would be for a few weeks too. It's a bit like having a runny nose, but with blood instead. I always had my box of kleenex with me!

Still sporting the gauze at bed time! I didn't want blood all over the pillows.

Kleenex and water everywhere I go

Day 4: I've been itching to feel a bit "normal" so my mom's friend's daughter took me to the nail salon.  I got my fingers polished and a pedicure. After we went for a quick round through Marshall's because it was next door.  

Holy cow. I am  exhausted. 

As in, seeing double-weird sensations-feel like the numbness in my face is accentuated-kind of tired.

From getting my nails done?!  

I went right up to get in bed and take a nap. I'm happy my nails are done, but definitely not ready to go out and about yet. We were going to be going out to eat for dinner, but luckily plans changed! 

I was a bit worried about traveling in two days. I'm shocked that so much energy is taken from having surgery that didn't seem very invasive.

My dad left once I was out of the hospital. He was a rockstar at taking care of me in there!

Kent came as often as he could    :)

Days in Hospital After Surgery #1

I was only in the hospital for two days. I thought that is quite amazing to have brain surgery and be out so soon.

I had very little pain. Tiny bit of numbness on the right roof of my mouth and a drop on my lower right lip. But that I could live with and was told over time it would probably improve.

Another side affect I was told about before surgery, is that my right eye was no longer going to cry. Going in through my nose was going to mess something up on the inside that made tears. My eye might get dried out a little easier and I'll just have to have eye drops on hand if needed. So far though, I couldn't tell a difference at all.

I am also not a crier.

The photo below, was a Sunday morning when I planned to meet my dad at church, I woke up too late to go. And for some reason, it really bothered me.

Maybe I just needed a good cry! I don't know.

I had to document my first cry with tears! The right has none flowing!

The only thing that had me worried the entire time was before leaving the hospital I was going to have tubes and cotton pulled out of my nose. I'm not sure why, but I was more nervous for this than anything else! I still had a strip of gauze taped to my nose to help keep any dripping blood from going anywhere.

So, the time came to get everything removed from my nose.  One of Dr Kassam's nurse practitioners came in. (He has 4 of them and they are all amazing. One is "assigned" to me, but I've gotten to know them all well.)

*My mom had to leave the room because she couldn't watch. My mom doesn't like the gory details about my surgeries.  Anything that she thinks is going to cause me pain she doesn't want to witness. My dad on the other hand, find things cool and interesting like me. Dr Kassam gives me the basic details on a surgery they did to me, but Dr. Corsten gives me a lot more details on what went on and I love hearing all of it! I find it all so interesting and amazing. So my Dad stuck with me in the room while the NP went to work.*

First she removed the tubes. That was nothing. I didn't even feel them come out.

Next, it's the sponge things. Ugh. This was disgusting. It felt like water was being shot up my nose and blood started pouring out everywhere. The sponges were 4 inches long and the whole thing was in my nose!

She let me take a little breather and hold a cloth up to catch the blood. I could feel it running down my throat. Then it was time to do the other side.

Here we go...same thing. Maybe a drop better because now I knew what to expect.

I sat with a few cloths for a while till the blood slowed down. I've never had a nose bleed so this was pretty strange for me. Next, I grabbed a mirror to take a look at me nose. It looked perfect. Well, as perfect as my nose is gonna look! But there was no swelling or anything! My Dad and I were shocked! Besides walking around with a box of kleenex to dab the dripping blood, no one would have any idea I just had surgery.

I was given orders that I can not lift anything over ten pounds, no bending over, no exercise, nothing that can cause pressure on my head. I also was to try not to sneeze or cough. The sneezing I was worried about because I felt like I usually sneezed many times a day! I luckily had no problems with this. It was weeks before I sneezed for the first time and it went great! No pain at all.

Tubes and sponges about to come out!

  

Here they are..

                                                                         Survived removal!

besides the little bit of crusted blood on my nose, you can not tell I just had surgery on it!

Night: Post Surgery

When I woke up after sleeping a few hours I felt so much better.  I was introduced to my new nurse for the night shift.

Her name was Gina and I instantly knew I was going to like her. She asked if I wanted a pop or anything to drink other then water and said she would heat up my lovely looking broth (dinner came while I was sleeping).  I said sure to the pop and still had my water close by.

It was probably about 8 p.m. now.

Every hour, all night long she had to keep doing this little "test" on me: "whats my name,  where are we,  and whats the date."  Then, I had to squeeze her fingers, then move my feet against her hands - pushing and pulling. She also checked my eyes. One was off for a little while, but it eventually went back to the same size as the other.

I asked if there was a mirror I could use. I was curious to see what I looked like! My rolling table actually had a little drawer with a mirror on it so that was perfect!

I had the gauze on my nose, but some dried blood was still on my face, along with sticky spots and some orange color from the cleaning wipes. I cleaned myself up.

Then my parents came back. They liked how I looked and acted much better then a few hours prior!  I seemed much more normal to them!

I asked for my phone and my purse which had makeup and my toothbrush in it.  They had it in a locker all day at the hospital, so they went and grabbed it for me.  They stayed and we chatted a while. They brought me up to par on the things I didn't remember.

I had lost a lot of blood during surgery and needed a couple units of blood.  I also had such a messed up nose my ENT,  Dr. Corsten, spent the first few hours reconstructing the inside of that.  They said it looked like I had broke it a few times and he didn't know how I was even breathing out of it.  My parents and I cannot come up with a single time that I had hurt it! So strange!

I vaguely remember hearing shortly after surgery that only a portion of the tumor was able to be removed.

That definitely made my heart sink. We had all hoped they would 'go in, get the tumor out and call it a day.'  But, that wasn't the case.

The part removed went out for testing.  My doc said it "bakes in an oven " for about a week.

Ok, let's do the waiting game again.

My hearing was so good (from getting the tube in my ear) I could hear everything and my voice wasn't loud in my head anymore. I was thrilled! I shouldn't deal with earaches anymore either.

My parents eventually left for the night and I slept off and on. Was woke every 2 hours for neuro-tests with my nurse and we chatted about a lot of things, too!

One IV and the oxygen clamp on my finger. You can also see bruising from trying to get IV's in the day before

Another IV and the blood pressure cuff. Always hooked up to many things! I have wires for the heart monitor too.

Surgery day! June 19, 2014

The night before and morning of surgery went just like the previous day (showers with the weird soap and no conditioner in hair). My throat now had a bit of a tickle to go with my congestion. I was still so worried they were gonna cancel me. I Googled. With some surgeries they do...yikes! Last thing I wanted!

That morning we were like pros. Said goodbye to my parents knowing I'd see them a bit later.

Weighed again, pee test again, all that. Everyone kept saying let's try this again! They all remembered me which was nice. My nurse from the day before peeked in my room to say hi also. They were all so great.

Stripped down and wiped with the sticky pads again. Then my parents came in and the nurse did too.  Time for the IV.

This attire became a regular for me!

Oh, great. Let's do this again.

I clued the nurse in on yesterday's experience. She tried a similar, but bit different area. Got the IV in! Awesome!

Tested the fluid...blew the vein. Here we go again. Lol.

So now she is looking at the same arm, but on my forearm. I don't see or feel a vein and think it's not a good option... but I give her the benefit of the doubt.

(She knows what she's doing, right?!?!)

Sure enough she got it! Smooth sailing! I could instantly tell it worked, I felt nothing.

She asked a lot of the same questions as the day before and then I had asked when the neurology lady with the wires was coming in. (A bit worried someone was gonna forget today since it all had to be rescheduled). A little while later she came in. Got me all hooked up again.

The anesthesiologist came in and I told him my congestion was horrible. He had no worries. Said with the breathing tube in it didn't matter. Okay, sweet!

He explained that he would be by my side the whole time. And he would be putting more IV's in for different meds and one to prep in case I need blood.

Sounds good! I'd already be out when that happens, so I didn't mind.

I was told the first hour is the nurses and anesthesiologist prepping me. Catheter, IV's, and the wires getting hooked up.

So after our talk he left and one of the docs needed to come in and mark what ear was getting the tube. One of the nurses came in with the hair net thing. (Oh man! This is when I'll be looking REALLY cute!) And it's getting really real!

Now, Dr. Kassam peeks in. He says hello and we have a little chat. I don't remember much about that, but he did put an X near my collar bone marking the ear for the tube. (Fluid was stuck in my ear from the pressure of the tumor so the tube will help it drain and I should be able to hear better) Then he left and it was time to get going.

Oh, Lord... I wasn't letting myself get nervous. No reason. Just do it, soon it'll be all done. Literally "seconds," it will feel like for me, I was told. This will be easier then my tests days! Always being poked, waiting for doctors and nurses, waiting for tests.  It'll be much harder on my friends and family waiting for me to get out of surgery.

So, two ladies decked out in surgery clothes come in and introduce themselves. They are taking me down and will be in there the whole time with me. (I make sure I'm extra nice to them so they know I'm a good person and they take good care of me! Hahahaha)

The nurses explained to my parents that someone will keep them updated. If they leave someone will call and if they are in the waiting room someone will come out. I knew they planned on doing both... they like to go outside the hospital and walk.

My parents and I always took a pre-surgery photo.

So it's time.

My parents get up and hug and kiss me. We say goodbye. No crying (from my mom) thank God.  I didn't think I was going to, but if someone started,  I maybe would have.

Then the nurses start pushing my bed out of my room. I felt a bit dumb on the bed being pushed.. I was perfectly fine to walk but I know this is procedure. My parents end up following us because the nurses are showing them their waiting room (which was nice and big and had sleeping rooms) along the way.

We said bye again.

Somewhere along the walk a person all scrubbed up walked by, but I wasn't paying attention. After they passed he said "Hey is that Valery?!"  It was my ENT (official title, otolaryngologist, head and neck surgeon) Dr Corsten. He works side by side with Dr. Kassam for all of the endonasal surgeries. They work together as a team often. He is very well known in Canada, and that made me feel even more comfortable with these doctors! So we all took the elevator up together.

I wait outside the room for a short bit with some nurses. Then it is time!

Into the operating room we go.

Once inside the big, cold, white square room with white machines and tvs all over, the nurses introduced themselves. (Maybe 4 or so more on top of the two who pushed me in?!) They said about 20 people would be in there during the surgery.

The operating table is very skinny. I was surprised by that, but it makes sense when operating the doctors need to be close.

My anesthesiologist put something in my IV.  I missed what he said and asked again and he said it was a calming med. I said okie dokie!

I helped transfer myself from my bed onto "the table". It was a bit soft with a sheet on it. There was a little cradle thing for my head. Felt comfy. As I got on there they asked me to untie the back of my gown so I wouldn't be laying on the knot for hours.

"Okay. Sounds good!" And that, is the last I remember.

The set up in the operating room (not my surgery)

So, either what I got in my IV was more then "calming" or I was "so calm" that I don't remember being awake a bit longer! Happy surgery! :)

Waking up, all I remember is some guy (probably the anesthesiologist)  saying something like, "Val, wake up... Time to wake up... ".

Then I remember  being in my hospital room.  Two female nurses. One light hair and one dark. One's name was Anna (Sounds like On-a). I remember thinking a great childhood friend of mine is named that too.

Then I remember a male checking these wire things attached to my chest. Three above my boobs and two below. I remember thinking, "OMG  he is seeing my boobs!"  But I didn't have enough energy to care.

Then I remember my parents voices. I had a piece of gauze taped to my nose. A few IVs. Things on my legs that squeezed then released.

The look I sported for a few days.

I remember my lips and mouth were so dang dry, I couldn't handle it. My dad asked for some Vaseline. He put it on my lips and that helped a lot.

But my mouth - it was like a desert.

I couldn't drink yet because anesthesia makes you nauseous and I couldn't puke after the surgery I just had. No throwing up or sneezing. I was already worried about it because I got nauseous having both of my kids... so I had meds before and during surgery to help with it.

Now, I need a drink so badly and I can't. I just had more meds for nausea because I felt a bit like I was going to throw up. I don't remember that part. I guess after 30 minutes they could do more to help me out.

I must have been complaining about being thirsty quite a bit though. Eventually my dad could give me a stick with a wet sponge on it to wet my mouth. I think my eyes were still closed. I'm not sure.... I never saw the "sponge on a stick."

Finally, he could give me ice chips. I let them sit in my mouth and melt to water. Heaven.

And a while after that I got water through a straw. Thank God!!!

I was told my throat would be "scratchy" from the breathing tube. Um no, more like I felt like I had strep throat it was so bad! Half my mouth felt numb.

I faintly remember seeing Dr. Kassam.

I remember being so tired, my aunt and mom chatting and it seemed too loud. So the next time she came in my room near me I said I was tired and needed a nap.

She said "sure go ahead we will sit over here."

I said "you guys are too loud." Lol!

They told me to sleep and they would leave for dinner and come back.  Perfect.

So off to sleep I went. With my water right by me. And my numb mouth. And my hurting throat.

But I was oh so tired.