Final results day is here!! - Aug 5 2014

The last few weeks were weird. Kind of in "limbo."

Knowing that my chance of having cancer is good. There is still that little bit of hope in me that it isn't...but I'm also prepping myself for it to be cancer.

My parents and I head down to Milwaukee. We have a meeting with Dr. Kassam and a lot of other doctors. I'd say its a bad sign that lots of doctors will be in the room, but at the same time, having them all there means they have a plan intact for me, right?

We stayed at my brothers in Appleton the night before, so that we can be to Milwaukee bright and early the next morning. When we get to Dr. Kassam's office we didn't have to wait too long to be seen. Once we enter the room we have a few nurses in with us and then Dr. Kassam is in just a few minutes later.

Tuesdays are his office visits. Every other day he is in surgery so this day is always very busy for him. Sometimes breaking news to people like us, sometimes checkups with patients who previously had surgeries, and also giving out good news to others.

Following Dr. Kassam in the room this day is the "other doctors." A neuro-oncologist, a radiologist, and an oncologist. Dr. Kassam also had his nurse and NP in the room.

He did break the news to us that it is cancer. He apologized so many times for taking weeks to get results, but every feedback that he had gotten, he wasn't satisfied with, so he had it sent out to more testing.

They finally had it narrowed down to a cancer that is very rare. Its more commonly found in around ten year old children. They were basing my route of removal on what they do for children, but a stronger dose of everything.

We will be starting my adventure with chemotherapy, shrink the tumor as much as we can, and then I will have surgery to remove what is left. And after that- radiation. They wanted to get started right away. The following week if possible. They asked about Monday, but that was my daughters birthday so I asked if we could put if off a few days.

Wednesday August 13th it is!

My dad headed home on the greyhound (it was quite comical walking him to the bus station with his backpack).  He made it down for every surgery or important appointment but always needed to get back to work. My mom and I stayed a few more days to have all kinds of tests done.

I had another MRI and a CT scan. Another test was a PET scan to make sure that there wasn't cancer anywhere else in my body. If there was cancer anywhere else, this could be a big change in our plans. The PET is the first hurdle to get over.

"Please come back clear, besides the tumor in my head."

I had a meeting with my Oncologist, Dr Howard. She was very sweet and nice. She went over the three chemo drugs I was going to be on and all the side affects possible from them.

It was a bit scary!

Losing your hair is the obvious one, but losing your eyelashes, eyebrows and nails all shocked me! It can also cause infertility or early menopause. This one bothered me the most. I'd always wanted to have more children someday, so I prayed this didn't wreck that chance for me. There were many more side affects but these were the biggest ones. And everyone reacts differently to the chemo drugs.

We spent the first night at the Wisconsin State Fair

ENT Check-Up Day and The Unexpected News

"...Today is 3 weeks out from surgery.

I still have zero results! It was sent out for a third "second" opinion!

What. The. Hell.

I have an appointment with Dr. Corsten, who did the surgery with Dr. Kassam. I am nervous because he will probably put something in my nose and I don't want him touching it! Ugh. I hated it last time he put the scope in to look around.

A lot of people message on FB or text me saying "Good luck! Hoping for happy news!" I keep telling them that the hospital is going to call me with the results. Today is strictly just looking in my nose and ear.

My mom decided to wait in the waiting room because I was going to have a scope again and it was something she didn't want to be in the room for.

Dr. Corsten came in the room, said I looked great, shook my hand, then sat on his little stool by me and told me that they are still waiting on the results from Johns Hopkins, but they are pretty positive it's cancer. Cancer.

Oh, Lord.

He said there's a slim chance it could be benign, but they really don't think so. When results get in they will call me. We will probably go into surgery again and remove what we can. Then radiation, maybe chemo. Depending on what kind of cancer it is, depends on the route we are taking.

I handled the news well. I didn't cry. At one point, walking to the car I wanted to, but I didn't let myself. We are going to get rid of this. There is no other option.

My kids need me. I think I have a positive outlook on life and hope that works in my favor.

Dr. Kassam had a feeling it was cancer from the second we were in surgery and since then, twice he has said" it's nothing we can't handle." I'm going to go with that motto.

(And the scope did not hurt in my nose at all. I think the reconstruction surgery helped with that!)

So, after I was through with Dr. Corsten and left the room I had to break the news to my mom...

I hated the idea of needing to do this. We didn't come prepared to hear this. No one wants to hear that their child has cancer. And I need to be the one to break it to her! She is more emotional then I am and I always made her be "strong" for me. I didn't want to see her crying about me. She has this breathing thing she does to help keep her calm whenever we are waiting for results or hear bad news...I can handle that. My mom took the news well.

I can still remember her face when I told her. But she did not cry.

We sat in the car for about two hrs before calling my Dad. We don't want to break the news to people. That's what would make it real. I don't want everyone to be like, "Oh Val, I'm sorry," or crying, or anything like that.  I just don't want to deal with it. I know that sounds kind of mean, but it's hard to console others when you are the one who is sick.

Maybe if we keep quiet about it, it won't feel real.

Once we were out of the city, we stopped at a cafe called Rangers. I ordered a grilled cheese and fries. Every time I drive by there now, I think of this day. My mom and I ate and were pretty quiet. It's one of those times where we didn't even know what to talk about.

And we both had so many questions but no answers for them..."

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.