We have answers!

Last week I was back in Milwaukee with my Dad for a meeting with my doctor to go over results and come up with a game plan to attack the tumor. We stayed at my brothers again, went to Texas Roadhouse for dinner, breakfast the next morning and then to the hospital to meet with the doctors. I was nervous. My main thing I wanted to hear is that there is not cancer anywhere else in my body.

Dinner with the boys

First I had an appointment with my ENT Doctor Corsten. He was to check my ear because I can't hear too well out of it. I thought my tube was out of place and I needed a new one. He was also checking out my nose to see how it looks and make sure that everything is normal. The tube in my ear looked good, it was where it was supposed to be. Good! But also makes my hearing loss a mystery!  Then he put the camera in my nose to check it out. This is the part that I hated the first time I had it, and my mom had to leave the room the next time it was done. But all went well, it didn't hurt, and my dad stayed in the room! All looked good. I talked to him about the big green things that I get. After the reconstructive surgery I had, he described my nose as a house that has only a few walls left in it. He said between the surgery and the radiation that I had, its normal for my nose to act how it does. He told me to use a neti-pot daily and that should help clear up the nasty things that build up.

Nervous car ride to the appointment

I was supposed to have about 1.5 hours until my meeting with Doctor Kassam. But he had a no show which is very rare so I was able to be seen right away!  Who in their right mind would miss an appointment with Dr Kassam?! I feel like anyone that is supposed to see him has something serious going on!

We only had to wait a few minutes, and in walked Dr Kassam with 4 nurses, my neuro-oncologist, radiologist and radiation oncology doc. He also tried grabbing Dr Corsten to come in for a minute but he had already ran off to a surgery! Dr Fukui, my radiologist, first answered a few questions we had. Is the tumor growing off the carotid artery or elsewhere? Elsewhere. The area we have been keeping an eye on this whole time still looks great. This one is in my jaw area. Not near the brain. She pulled up a few pictures and I got a good one where you can really see it. She said the reason I don't have any side effects is because I am numb on that side, I can't feel anything going on there as it is! If I had feeling, I would probably know the mass is there. I also asked how the PET looked, and it sounds like everywhere besides this one area looked good.

The new ugly blob

Then Dr Kassam started talking. He said that our first route is going to be surgery. He said we will look into chemotherapy or radiation after surgery. We are going to go in through the same area as before. The right side of my head, down to the bottom of my ear - maybe a little farther (looks like I'm in for another shave! ugh). I asked him if there is anything important in that area that we need to watch for. He said the facial nerve that moves the right side of my face is right there. Dr Corsten's job is to watch that nerve, and try to keep it safe during surgery.  More of my jaw is going to be titanium when surgery is done. It is already lose and not right feeling so I am okay with that. Last time I needed to figure out how to chew, I may need to do that again but it's doable. Dr Kassam said he wanted to take care of this ASAP. He will do whatever we need to do for me and surgery may be as soon as next week.

 They wanted to get a biopsy done and I needed one more MRI prior to surgery. The MRI can be up to 6 weeks before surgery, but can't be a week before. Since we live so far away, we decided to do it all the next day instead of us needing to come back down again.  I had asked if we could do it that day, and Dr Fukui said we could, but it would be quite painful because she needs time to get the pain meds ordered. So I said the next day would be good!

The next morning they were having a meeting to set up surgeries and I would get a call with my date. My parents had two trips coming up. I was hoping surgery could be in the two weeks that they are home so they wouldn't need to cancel either of them. I also wanted it soon enough so that I could make it to my friends wedding in Vegas.

Since my hearing is off Dr. Corsten had me go downstairs to the audiology department for a hearing test. First the lady put these things in my ears that test the vibration. Then we did a sound test. I had headphones on and had to click a button whenever I heard a noise. Then I had to repeat the words that she said. Starting with one ear, and then moving on to the next. The last thing we did was more noises I had to click when I heard. One ear had static in it while beeping went on in the other.  Afterwards she came and talked to me about the results. I have some hearing loss in both ears. Definitely more in the right ear then the left. But not to the point of needing a hearing aide in it.

After that we went to lunch with my Aunt Liza at a place called Benelux. We go there often because it is just a few blocks from my Aunt's condo. After lunch my Dad and I went to her place and I took a nice long nap. Then we met my Aunt Jaclyn and her family for dinner at a great mexican restaurant! I don't think I was ever not full that day!

The next morning my Dad dropped me off at the hospital at 7AM. I first had an MRI and then I was going to have a CT and the biopsy done. I wasn't allowed to eat or drink anything that day. The MRI was not eventful. I had the same guy that I have had many times. I told him that he will be seeing a lot more of me again! After that, I was brought to a waiting room for a little bit. When I was pulled back, they brought me to a bed to wait for the biopsy. I thought I was getting a CT and then wait a few more hours for the biopsy but the prepped me for the biopsy and the CT is done right before the procedure. I spent a few hours just laying around. It was boring but I luckily had my phone to keep me company! Eventually my Dad showed up too. I didn't want him to be sitting there with me all day because I knew it'd be boring!

Waiting to go in for the biopsy

When it was time for me to go in, my Dad left to get some food and buy a phone charger for me! He also went out and got new wiper blades for my car! Perks of taking my vehicle! Haha. He thought the wipers were bad and we were dealing with rain while down there so he wanted it taken care of.

I had a team of about four nurses and a tech in the CT room. I had to get the scan first with a little dye in it, and then another scan with more dye. Well, the first scan, the dye made me so nauseous! It was horrible. I was doing everything I could to keep myself from throwing up! I told the girls and they got me a nausea med to put in my IV. The next round was going to be a lot worse they said, so lets see if the IV med did its job. Sure did! The dye feels like heat, running through every vein in your body. It actually feels kinda neat! I had no nausea this time at all.

 Dr Fukui is now in the room and getting ready for the biopsy.  We were going through my cheek because it was the easiest path to get the the mass. First she numbed my cheek with some meds, and they also put a little bit of a calming med in my IV.  She tested the area a few times to see how it felt. I couldn't feel much at all so she started. She went in with a skinny needle at first to make a path. Once that was done she used a bigger needle that grabs some tissue from the tumor. It is called a core biopsy. She went in about 4 times with that. I couldn't feel much, just hear it. It sounded kind of like a hole puncher. The last one I was starting to feel but it wasn't too bad! After it was finished they patched me up and wheeled me back into my room for observation. They said I needed to wait about an hour before leaving. The nurses didn't have to give me a lot of the calming med so I should be back to my normal feeling pretty quick. Sometimes people will get so much calming meds that they are so calm, they forget to breath!

The needle for the core biopsy

After the biopsy. Full of the orange antiseptic!

As we were leaving the hospital at 4 (5 home time), we stopped in Starbucks so I could finally get a coffee and something to eat. I got a call from Allyson, my nurse coordinator who told me that surgery was going to be May 1st.  Dr Kassam is out of town the two weeks before then, and the first week was booked with emergency surgeries.  I was happy to finally have a date so I could plan life around it. I need to switch my work schedule around and make sure the kids are all set up on where they will be staying. The negative things with this date are my parents need to cancel one of their trips, and I will not make it to my friends wedding in Vegas. This is probably what upset me the most. I didn't want to miss it, I know it would be a fun time. We have been talking about this day forever! But what can I do. I need to have this surgery so I can see that friend again. So that I can take a trip to Vegas again.  I know she understands but it still sucks.

My dad and I raced home! Got here around 10:30. Hugged my Mom, thanked my Dad and went home to my house! They left for their Florida trip the next day!

Our gorgeous sunset on the way home

A few days went by and I got a call from Doctor Corsten's nurse.  She explained the biopsy and went over a few appointments with me. The mass is the same kind of cancer as before. I see that as a good and bad thing. Good being that it is not one of the horrible brain cancers that kill you within a few years. Bad being that my cancer doesn't do great responding to chemo and that we have very little info on what it actually is. You can't google it and read up on it. Which can also be a good thing! Haha.  The friday before surgery I will meet with Dr Corsten to go over surgery and sign a few forms. Then I will have blood work done and after that a CT with fiducials. Fiducials are these little stickers that are put on my head and forehead. They help guide robotic instruments during surgery.  Then I am free to go until surgery a few days later.

So now I am just prepping myself for surgery day. Clearing my schedule, and making a list of things I need to pack. Things that you don't think of until you are there. But, lucky me - being a pro at this, I know what I need! For example, an extension cord so I can plug my phone in to charge while still being in bed. Face wipes to wash my face without needing to get up. A razor to shave my arms so that they are hair free before the IV tape is all over me (makes ripping them off painless). Nail polish so I can paint my nails once out of surgery. They are all little things, but they make hospital stays that much nicer!

I do still prefer to be the one going through this rather than a close loved one. I think that would be worse. I just get in my cancer mode and do what I need to do. I don't think about whats going on, I just do it. I am spending these two weeks working and hanging out with my kids and friends. Trying to relax and get some fun things in. I know I won't care for my looks right after surgery, and I will have very little energy,  so I'll want to be cooped up at home! It is frustrating. I've worked myself up to being at work 6 hrs and this surgery will set me back on that.  I finally can wear my hair in a ponytail and now, with shaving the side, I will be back at square one again. Is this how my life is going to be? A calm few years and then back to fighting? Let me tell you, it gets exhausting!   But, I'll do whatever it takes to keep living and being here for my babies....

The Beginning.

Hello!  Here I am writing a blog.  Never have I wrote one or expected to write one but I keep going over all these little details of my recent life and I don't want to forget them over time. I'm not a great writer so don't expect some ilaborate thing! I just figured its time to start writing down this experience.  Maybe it will help somebody else.  Its definitely one that most people haven't had and never will.  Thank God.  I hope you enjoy it! Or at least find it interesting! I will warn you that there may be some pictures that are too graphic for some!

It started with my ear. One day I began having a hard time hearing out of it. Eventually, I started getting earaches, and I had never had an earache before. I kept going to the walk-in clinic for antibiotics. I was assuming that I must be coming down with an allergy of some sort. I friend of mine used to have very similar side affects before finding out she had many food allergies. After dealing with this for almost a year I had started taking Motrin daily because my ear and head around my ear was constantly hurting. The antibiotics weren't even working anymore.

I did not have insurance for a few years. Renting my station at the hair salon makes me 'my own boss'. So insurance was not offered. I had been lucky to be healthy and never needed it thankfully. On New Year's Eve of that year though I was in so much pain that I decided to go online and find some insurance! I knew I needed to get a decent one because I figured I would probably need a lot of allergy testing and what not.

One day, a few months after having insurance,  I had noticed I had a weird feeling on my right cheek and my tongue. It was a bit tingly when I would touch my cheek or run my tongue on my teeth. So, that day a decided I better get an appointment, pronto! I had previously tried to get one 2 months prior, but the doctor I wanted to see was busy for more then a month out, so feeling frustrated, I said I'd call back.  This time, when I called, I said I would see anyone. They had an opening for me the next day.

At the appointment, once I told them I had the weird sensation, they scheduled me for a CT. This appointment was on Wednesday, May 7, and the CT was scheduled for that Friday.  My parents left Friday to Milwaukee for a trip to Puerto Vallarta. My mom was nervous about going since I had the CT and I told her "Don't be! It'll be just fine!"

My appointment was at 3:00 pm on Friday. It didn't last very long and I knew that I wouldn't get the results until Monday, since it was the end of the day and the weekend coming up.

I left after it, went home for a bit before needing to pick up the kids from the after school program.  I did some lawn work and then got into my car to leave. I saw I had a missed call from the hospital. I was shocked that I heard from them so quick! I thought they must have had some extra time on their hands! No scary thoughts ran through my head. I called back and they transferred me over to my doctor.

At this point, I'm just down the road from my work, stopped at a stoplight, and my doctor told me that they found a mass. They had me scheduled to go to Marquette on Monday for an MRI and meet with a neurosurgeon there.

I pulled into my work parking lot to process all this.

A mass.

I am in shock.

I just sit there, parked. Staring. A mass. Is this a dream? It can not be happening to me.

I hate the thought of calling my parents and give them this news. When I was 22 months old I had a benign brain tumor. I had a craniotomy then, stayed a few weeks in the hospital and everything was good. I went back for MRI's for the next 12 years. I know this was a big deal for them and my whole family. I was so young though that I do not remember it at all except a little of the MRI's I had growing up.

Finally I make the call and break it to my parents.  I can hear my mom panicking on the other end. I do not want them to cancel their trip! I can easily have a friend go with me on Monday. Nothing is going to happen in the meantime.

But they refuse and headed back home the next day.

I cant imagine what this is like for my parents. They went through all this once with me and now they have to do it again. But, I made it through the first time, so I'll do it again.

After telling to my parents, I went into the salon because I know my good friend Amanda is the only one left working. She had asked how it went and I said they found something. After her client left, I gave her more details and I finally broke down. I was so worried about my kids. What if they were left without a mom. Then, I had to pull myself together and go pick them up from school.

I was numb after that. The rest of the weekend I walked around in a daze. Not really knowing what was going on. My daughter Shaya was in a wedding. I spent saturday with a lot of people. Another good friend of mine, Joanne was there and she knew the news. I didn't want to tell anyone else yet.

On Monday, I had to be to the hospital early. Both parents came with me.

We go into the hospital and I get on a gown for the MRI. Before going in, I had to wash my eye makeup off because if there were any sparkles in it, it could mess with the MRI results. I also had to take every piece of metal off me. There was an earring of mine that I could not get out! My mom and I were panicking! And I felt stupid that we were holding up the MRI because of a dang earring! Finally I got it! Sigh of relief.

I had the MRI, it was loud! So many weird strange noises that didn't make any sense. I had to stay perfectly still for over an hour with cushions on the sides of my head and a strap on top of my head to help keep it still. Like I said earlier, I had many of these growing up, I couldn't remember the noise, but I could remember that I had to be perfectly still.

After that was done, we had time to go eat some breakfast before going back to the hospital to meet with the doctor and go over the results.

When we got back to the hospital I felt like we sat in the waiting room for so long before they finally called my name. Once we got into the room and went through everything with the nurse, the doctor came in. Doctor Rovin.

He was a quiet man. Very nice. He went through everything with us. He showed us the scan and you could see this big white "blob" on the right side of my head next to my ear.

It looked UGLY. It wasn't the size of a pea. It was huge. For never reading an MRI before, it was very easy to pick out the mass.

The doctor believed it may be an Acoustic Carcinoma.  Which is not a cancerous tumor. We breathed our first sigh of relief. I of course had done a lot of research over the weekend and this was one that I had read about and hoped that this was what it was.

The "beast"

He recommended us to a doctor, Dr. Kassam, in Milwaukee that specializes in the kind of tumor I had. My records were sent to him. Now, it was just wait for an appointment to be scheduled.

I Googled Dr. Kassam and just reading about him, he seemed amazing. I couldn't find a single bad thing about him. He was too good to be true! He was a reknown neurosurgeon who had just taken over the neuro unit at Saint Lukes in Milwaukee.

A few weeks later I finally got to see him. Those few weeks waiting for the appointment we were panicking. Of course we wanted to be seen NOW. But this is the beginning of us learning how to be patient when it comes to the medical field.  We wanted to be seen NOW! This is life or death for me. It was hard living life knowing that there is a tumor in my head that we know nothing about yet.  My Marquette doctor reassured us that waiting a month or so is okay for the next appt.

The day finally came. My mom was with me, we had stayed at my brothers apartment in Appleton the night before. He had just moved into this apartment and hadn't even stayed a night there yet!

When we get to the hospital, it was so much bigger then I'm used to. It was very nice and I liked the looks of it!  First I had another MRI. We had to follow a colored path on the floor and that took us to Diagnostics. Afterward, it was time to go to the doctor's clinic office. We had to walk across this long skywalk with a bunch of windows and go up a few floors. His office was very nice and so were his receptionists. We didn't have to wait too long in the waiting room. Once we were called back, we were introduced to a few different nurses. Some just sat in the room and took notes the whole time. Eventually Dr Kassam came in. He was a short man, very nice with a calm quiet voice. We then discussed our plan. The first thing was a brain surgery he was going to do through my nose to remove the tumor. It is called an Endonasal approach.  It sounded like a cool way to do it. It wasn't going to be like most brain surgeries where they cut into my skull. The hospital stay is just a couple days and the healing process is much better and quicker. We set the date for a couple weeks later! Dr Kassam also told us how much he liked Dr Rovin and that he had been begging him to come work with him.

The hospital. At the bottom, the glass windows are in the skywalk.

The endonasal approach - they go into the nose, remove the septum near the back of the nose and the bone in front of sphenoid sinus. By doing this they can reach the brain. The tumor is then removed with an endoscope. Once they are done, they reconstruct the skull base with septal membrane and that seals of the brain from the nose.

Before we left, Dr Kassam reassured my mom that everything was going to be ok. He grabbed her hand, looked her straight in the eye, and told her "this is nothing we can't handle".

My 30th birthday dinner

I dreaded turning 30. I never wanted to feel "too old" to do anything. My whole 29th year I complained about it. I now feel like this was God's way of teaching me a lesson to love getting older and not worry about my age. My Mom has always said getting old is much better then the alternative! And I now agree..