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....

6 Month Check-up and some UNEXPECTED news - March 14, 2017

Hi y'all! I am on a flight with my kids, heading to Arizona to stay with my cousin Alicia and her family. I haven't been home much in the month of March! I had an amazing, fun trip with my friend Stacy in Hollywood, FL. We stayed with another friend of ours named Meagan. She lives on a sailboat! We explored and soaked up the sun! I was home for 5 days and then went to Milwaukee for my 6 moth MRI. Then home for 5 days, and now gone to AZ with my kids! I don't ever plan two big trips so close to each other, but now I can see the reason behind it all. Let me explain:

M

My brother Kent came with me this time for the MRI. I decided to stay at his house the whole time. We went down the morning of my appointment, had lunch with my Aunt Liza, and then back to his house we went.

My first night there we went to a fun sushi restaurant. It was all-you-can-it, and as you walk into the big dining area, it is a circle. The chefs are in the center making the sushi and then putting them on little boats that float around in from of all of us eating. You can grap whatever you want and also make custom orders. Highly recommend going! It was delicious and fun!

The next morning we had to leave around 7 to get to Milwaukee on time for the MRI. I was taken back right away, and the MRI was about an hour and 15 minutes. I dozed off a few times and it went by pretty fast.

My hospital gown pic

Once that was done we headed to an italian place to eat with my Aunt. The food was great and its always nice to see her and catch up on life! She asked how I was feeling about the scan and I had told her good! I wasn't nervous for it. I felt as good as I have been, no changes to that which I see as a good thing.

As I said, this appointment I was the least worried about. It had now been almost two years without a change, I've gone through 3 of the 6 month MRI's now and I keep getting the same good results. My trip with my girlfriends had kept my mind busy prior to this appointment. I kept saying I need to plan a vacation every 6 months, the week before the scan so I don't have time to stress! Haha. 2 days before the scan I had some anxiety about it, but other then that I was good. The day of, I was calm.

Kent has not come with me to one of these appointments before. He was surprised at how many people are in the room. 4 nurses and my radiologist, along with another doctor.  Doctor Kassam was out of town that day. Bummer, I like being able to see him!

Traveling to Milwaukee

Today when they walked in, the new doctor first asked how I was feeling. If I had any problems with swallowing or talking. I had said I felt good, and had no problems with that at all! But I was thinking at that time, like the other appts, quit with the small talk and give me answers! Ha. I don't like waiting during this part. Get right to the point! Walk in and tell me me, the scan looks good! Or, the scan looks bad!

During this talk, my radiologist was pulling up the scans. She always puts one up from the last scan I had, and from the scan today. "Well Valery, we have had some of a change this time...."

My heart sank. Are you kidding me!! The one time I barely worry, the one time I bring my brother along. UGH. (Kent was great by the way, he handled it much better then my mom probably would have. Haha.) I was in shock more then anything at this point. I still am. I have a hard time believing it has grown because there has been no physical changes for me..

The next step was to get an MRI of my neck. They want to make sure that there is not cancer anywhere else. Luckily I was able to work that one out to be done at home.  It was like a treat for me to drive up to our local hospital and hop into an MRI machine. I usually don't like to mix hospitals, but this time, I couldn't fit in a drive back down to Milwaukee in the 5 days I was home.

My doctors will be discussing my case at their tumor board meeting on Tuesday morning. I am hoping to hear something from them after that.  I am also scheduled for a PET scan the day after we are back from Arizona. Luckily we are flying in and out of Milwaukee so this will work out perfect. Once the PET is done, I can go home for another 5 days before heading back down and meeting with doctor Kassam to go over the results and discuss our plan of attack.

Personally, I hope it's a surgery to go in and remove what they can. If I can skip the chemotherapy this time, that'd be great! The tumor did not respond well to chemo last time so I feel like it's a waste of time.
The tumor is not in my skull or on my brain this time so I see that as a positive thing. It is right below in my jaw area.  I am not sure if it grew off the spot on my carotid artery that we have been watching or if its a whole new area. But that is all info I will find out at my next appointment.

Back to why I had the two trips, I think my girls trip was to keep my mind off of the appointment, I had a great get away with my friends. I relaxed and had a fun time! I had nothing to worry or stress about, the kids were with their dad and my parents. It all worked out perfect and was a much needed trip! Memories that will lasts forever.

Then I got my results. Now I can not wait to get away from reality with my kids for some R&R in the sun with them! This could be the last trip we take together for a while. The kids were so excited to go, there was no way I was going to cancel it on them.

This morning flying out! We stayed at Kent's house last night.

I am supposed to go to one of my best friends wedding May 13 in Vegas. I really hope that at that point I am healthy enough to go. I would absolutely hate to have to miss it. But I won't know the answer to that until I meet with my doctors.

So yes, right now my life is in limbo. There are no answers. But luckily I do know what to expect. The medical field takes time. You need to use your patience and I think I've gotten pretty good at that! I already know that I have amazing doctors taking care of me. I know what chemo feels like, I know what the surgery process is like, radiation too. I know what it's like to be in the ICU of a hospital for a long time. And I am okay with it all. Bring on whatever we need to concur this once again!

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..."