Nov 2022 results of trial med

Hello everyone, I just got back from Mayo. This appt was the important one with my scans that would tell me if this trial I have been on, was working. I also had an eye doc visit and an appt with an ENT. I was most stressed about the scans. It’s been 4 months that I have been on this trial now, and these scans were going to be the first to really tell us if it was working. I have been hoping and praying that this was my miracle drug. I’ve struggled a lot on this med - I am extremely tired, my body is so sore and aches like I’m 100yrs old, not to mention very dry. I am like a snake shedding a layer of skin. Literally! After the very itchy skin, came the dryness. I’ve lost all of my hair, lashes and brows. My eyes are dry and my vision is worse. Sometimes my nose is super dry also. After dealing with these issues for 3(actually 4, but 3 with side effects)months, all I wanted was to hear something good came of it. I first had a blood draw in the oncology department. I wore my glasses and my hair. Once there I saw so many patients that were bald or had a hat/scarf on over their bald head. I regretted not wearing just a hat because it’s much more comfortable!

After that I went right over to my scans. I had a scan of my sinuses, my neck, my chest, abdomen and pelvis. I think this was the longest I’ve been in the CT room. Usually I’m in and out in under ten minutes! But there was a lot of areas to be looked at this time around. The nurse in the room with me was this very nice guy and he helped to speed along the process. At one point I asked to text my Mom to give her a heads up that it'll be a bit longer then I thought. He joked and said, 'Oh I thought you wanted it to take a selfie with me!' Haha! So after I text my Mom, I made him take a selfie with me!

After the scans I had time to run and meet my Mom for breakfast at a cute restaurant called Benedict’s. We had just enough time to order and eat before we needed to run off to my vision test. My eyes have gotten worse, especially over the last month. I’ve had astigmatism for years but it wasn’t bad and I wore my glasses like 4 times a year. Basically if I liked how they looked with my outfit. Haha. Well now I find myself wearing them many times a week. Things are blurry now that aren’t too far away from me. He checked my eyes, did several tests, including dilating my eyes again! Luckily this time I had my Mom with me who could help me get around afterwards. Last time I was able to go back to the room and sleep, but unfortunately this time I had hours of appointments to get to still! He said my eyes looked healthy but that I did need to get a new prescription for my glasses once I got home. So I am unsure if this is a side effect to the drug or not? Maybe just getting old..

My Mom and I then walked back to the oncology floor and found some comfy chairs to rest in while we waited for my appt that had the answers to my scans. We had about 50 minutes. Not enough time to walk back to the room and relax for very long. With my eyes barely working and being on the go for a few hours now, I had no problem falling asleep while we waited!

I met with one of my oncologists who has been watching over me while on this trial. He was pulling up scans and showing us different pictures, it’s hard for us to really tell what we are looking at, some pictures seemed good and others not. I think he was trying to stall a bit but eventually he broke the news to us that areas are still growing. Ugh. Of course, why would we hear something good? It’s just so damn frustrating because everything has been a trial and error. For so many yrs! Let’s see if this works, nope, okay let’s try this. With a million side effects to go along with it. I wish this cancer just had a chemo that it responded to. I guess I’m lucky that it is slow growing. But it’s like I’m slowly awaiting my death. I’m here for my kids thank god, but for how much longer? I do feel my breathing is getting a little more difficult. Is that from this trial or is that a side effect to the cancer growing in my lungs? Up to this point, I had no breathing issues. And then I wonder, if I weren’t on any meds, would it still be growing just as slowly? Then I could at least be feeling good… but do we want to risk it to find out? So many thoughts, so many questions.

After this oncologist talked with my original oncologist, Dr Robinson, they decided since the cancer is growing slowly on this med, we will give it two more months, then have scans again. And unless some miracle happens🙄, we will end this trial and try something else. We do have one more IV chemo to try, but after that….. idk. I then got my second round of blood, got my meds for the month, and was done w appts for the day. We ordered food in both nights as I was too tired to go sit in a restaurant.

The next morning I had my ENT appointment! I was looking forward to this because I’ve had sinus issues for many yrs and it recently got even worse. As in, my nose is constantly running. I need to blow it every ten minutes. It sometimes smells in my nose. My taste and smell are not well because of it. This all started 8 yrs ago when my first surgery was done through my nose. And yrs of having radiation done to that side of my face has made it even worse. I don’t know what I was hoping for, some surgery to cure all the issues? Turns out there isn’t much he can do. He had a camera in my nose, cleaned it out(that was fun😵‍💫), and took a swab to test for bacteria. He put me on a med for a month to see if it helps at all and gave me a rinse to use daily. I also asked him about my ear which I had not brought up when I made the appointment. I told him that I can’t hear out of it, that I have a tube in it, but I’ve been told that because of radiation, it is so swelled up in my ear, it’s impossible to get to. So, he looked in my ear, and believes it is closed up! Like, skin grew to block it completely! Ayyye. So now when I’m back in a month to get my meds, I will be getting a scan of my ear so he can see what’s going on in there. I had asked if a hearing aid would help me at all, but he said right now, no. I wouldn’t mind having one to hear better when out at a restaurant, or sporting event.. when a place is loud, it’s much harder for me to hear anything. Even at work when blow dryers are going - which is often since we have gotten more stylists working!

So that is that. My Mom and I headed home. Back in a month. Then back in the beginning of January and hopefully after that I will get a little break from going there, or being on any meds until I start the new one. I’m mad, but I’m also numb to the news. I’m also pretty used to not hearing good news, so why would it be any different this time? Gotta keep chugging along on this med for two more months. Gotta keep trying for my kids. My kids, the only reason I keep going and haven’t gave up yet.

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....

November 2015 to March 2016 Swelling, Yoga, Anxious, MRI

What happens in Vegas....

I had always said that in the Fall of 2015, if I was doing good and not needing any surgeries, I wanted to take a trip to Vegas with any girlfriends that wanted to come.

We had a lot of fun!

So, in the beginning of December, off we went! 2 of my girls from home, Crystal and Amanda, came with me. My friend Catherine, that lives in California, met us there. We had a blast and decided its something we want to try and do every single year! Not necessarily just girls, but a Vegas getaway with whoever wants to come! We will see if this happens...

Crystal and I had our phones stolen out of our cross-body purses that we were WEARING. The worst part of that, for me, is I lost a lot of photos from my surgeries. I think most of the important ones were saved, but not all of them were on my iCloud.

Yoga!

My next MRI isn't until March. It's been great not having any appointments or surgeries. I am starting to work more, too. I went back to work in July after my May surgery. I was only doing three days a week and 3 hour days. My body could not handle anymore. In October of that year I started doing yoga at least 6 days a week. I could tell my body was getting stronger. I bumped it up to 4 hours a day and then 5. A few weeks into doing yoga, my swelling at my temple went away! I really do believe yoga had to do with it. Yoga is good for your lymphatic system. I think just getting all the juices flowing inside of me helped to move the fluid around and spread through my body. I hadn't been so excited about something in a long time! I could part my hair in different spots now, wear my hair back off my face.  It was a huge relief for me.

Going in for the MRI

By January, I was getting anxious for the next MRI. I had not gone six months without one and I was ready now for the next. I knew time would go by fast so I tried to be patient waiting for it. When March finally came I was more then ready for it!

I went in for the MRI, and then walked the crosswalk once again. We were called back into the room, where we wait for the doctor. It is not an examining room. It's a room with a table that is flat against the wall, and rounded with chairs around it.

Staring at the computer...
waiting for results

There is a big computer there for the scans to be pulled up on. My mom and I sit there and stare at the blank computer. She does her breathing and I just sit.

Here we go again, that life changing moment.

So happy after good results!

The radiologist walks in and instantly tells us everything looks perfect! Then she pulls up the scan to show us. There is a little white cloud  around the area we are watching but she said that is from the radiation and its nothing to worry about.

I had asked if Dr Kassam was busy or could I say "hi" to him, but he was in a meeting. They tried to get him out, but he couldn't do it.

Dr. Rovin knew I was ready by four months for the MRI and asked if I wanted to schedule my next for four months out...or do six months and if I feel the need to come sooner I can just call. I chose the latter option since I knew I could change it if I want, plus I had now gone six months and there was no change.

We are actually at 14 months without a change! January 2015 is the first MRI after radiation and there hasn't been a change since then. September 2016 is the next time I will be seeing them!

After getting the result, we were sitting on a bench contacting our loved ones and I could see in Dr Kassam's waiting room, there was a guy with a helmet it on just like mine.

I wanted to go in there and reach out to him and tell him I had been there.

And you will get past this hard time in your life.

Summer 2015 to October 2015...Lumbar Puncture. Skin Cancer. T-tube.

My summer was pretty uneventful. I recovered from my surgery very fast. I wore headbands and wraps every single day to cover where my hair had been shaved. It was slowly growing, though!

I had to go back in the beginning of June to have a test to make sure I didn't have a cerebral fluid leak. My nose was draining clear fluids and I also had a fluid spot of swelling on my right temple that came a few weeks after the surgery. A CSF leak is a leak of brain fluid coming from the dura layer of the brain. When the titanium went in, the dura may have been punctured and brain fluid leaking out.

For the test,  I was laying on my stomach on a table with an x-ray machine above me. I had a lumbar puncture done (needle in my spine) and a dye injected. The table was then tilted so my head was lower then my feet and some x-rays were taken to see where the dye was going. I had to stay in the hospital for a few hours after to make sure I wasn't reacting to having the lumbar puncture done.

Dr. Kassam and I

The next day, we were told that everything looked great! There was no leak and the swelling on my temple would eventually "soak up" and go away. I also asked while there about a pointy spot I had behind my ear. It hurt to the touch, hurt when I had a headband on and hurt to lay on! Turns out that is a corner of the titanium plate. Since all was good, we got to head home! I had to miss the kids last day of school during this stay.

On August 25, I was invited by my doctor to a fundraising dinner. He invited a few of his patients and another doctor, that was attending, did the same. They both were going to speak at it. It was a fun time! My Mom came with me, we got to dress up and eat some delicious food! My doctor ended up sitting at my table right next to me too. We got to make small talk, and he got to see me all dressed up with makeup on and my hair done. He has only seen me at my worst, or in a hospital gown! I was really happy that we got to go and lucked out that he sat next to me too.

In the beginning of September I had a little pink spot on my forehead just under my hairline looked at. I had it for over a  year now, and it wasn't going away. It was a bit raised and was shiny like a scar. This was the only thing on my body that reacted when I was getting chemo. It scabbed up, but then was back after the scab fell off. So, since the past crazy year was over, I decided to have it looked at. (Along with catching up at the dentist and eye doctors.)  My doctor sent me to a surgeon here in town. He removed it and had it tested. A week later, I came back to have the stitches out and sure enough, it was basil cell carcinoma! Are you kidding me? He said after everything I had been through, he wasn't going to go back and remove more. We are just going to watch the area and see if it grows back. Had I not had a brain tumor, this would have been a lot scarier to me then it was.

On September 15th, I had a check up. This included an MRI to check out how the titanium plate looked and to see if there has been any change to the area where a bit of tumor was left.

I also still had the fluid swelled area near my temple. I was getting really frustrated with this because I finally had a normal shaped head after hiding it for 6 months, but I still have this and I had to keep hiding it. They said they were going to take a look at it this time. I felt like it'd be so easy to put a needle in it and suck out the fluid. I'd joke that I was gonna take a knife, and put a little slit in it to drain it. (Yes, I was that DESPERATE!) I was also getting my port removed the next day if my MRI looked good. I was really excited about this whole appointment!

So, I had my MRI, walked the crosswalk over to my doctor's office, and waited a few minutes for him to come in. This is when I get nervous. My mom does her heavy breathing. Whatever my doctor has to say when he comes in can be a life changing thing for us! We finally feel like life is getting back on track. Things aren't 'normal,' but we are trying to make it that way.

Dr Kassam walked in, and instantly told us all looks great! His radiologist showed us the scan pictures and everything looked so good. The little area is still there, but no changes have happened.

Yippeeeee!

Chemo port is comin out tomorrow! Now, the swelling? Dr Rovin, who helped put the plate in, decided that we should do nothing to the fluid. Let it be. It will eventually go away on its own. This made me sad. I had tears in my eyes. My mom was talking for me saying its okay and we understand. I had a hard time understanding because I didn't want it there anymore! I'v'e hid things on my head for over a year now! I want to stop hiding!

Before it was removed and after

The next day, I came back to have my port out. It was exciting, but I was also kind of sad to see it go. The port saved me from having IV's so many times. My entire hospital stay, I had the port being used to pump meds or antibiotics.  I'd have even more IV's in my arm if it wasn't for that. It would be nice not having a bump on my chest where it was though. Shay would try to sit on my lap and I'd have to shift her all the time so she wasn't laying against my port. The port is a sign of having cancer, so it being removed, is a big step in the right direction.

I wasn't put out for this surgery. Just sedated a little and a lot of numbing shots and pain meds given to me through an IV as they removed it. I get nervous for the surgeries that I'm awake for! Luckily, I felt nothing after the numbing shots. I had internal stitches and a lot of glue on the outside. I could not pick the glue off. I needed to wait for it to go away on its own. Once the numbing wore off, it was a bit painful, but after a few days it was much better. Even now, when I push on the area where it was, it hurts a little, I'm not sure what the reason for that is. It was very discolored for a while but it's returning to a normal color now.

Now that that was all taken care of, I do not need to come back for an MRI for six months.

Six months!

I have 6 months of living 'normal' life. Whether the tumor is growing or not, I will have no idea. The sound of this is great! I am also allowed to slowly ween off of my medications now. The first time in 15 months I will not be on a pill every day.

After my October surgeries, I noticed that my hearing wasn't very good anymore and eventually my ear tube fell out. So this time, we were putting a T-tube in.  It is more permanent then the other tube I had in.  This 'surgery' was done in Marquette and my friend Amanda brought me. I wasn't out very long for this, less then an hour. Then we did some shopping and eating before heading home! I could instantly start hearing better again too!

Pinned hair, no headband!

My hair was finally long enough in front to pin or twist into a bobby pin. I no longer needed to wear a headband! It was such an awesome feeling to be done with the wigs, head wraps, hoods, headbands. I still have extensions on the right side to cover the awful swelling, though.

I had heard from so many people about how strong I was, and such a good spirit I had going through everything. I loved hearing that and believe that I was. Going through the surgeries, I really was doing what I had to make it through. I didn't see any reason to have a negative attitude, what good would that do me?

It wasn't until summer time that I started having a hard time. I think now that things have calmed down, it was all really hitting me. I have cancer. I had a horrible infection that could have killed me. I have many uncomfortable face problems. I am exhausted. I always try to look at the best in everything, the infection didn't kill me. My cancer isn't growing at the moment. My face problems could be SO much worse then they are. For having a titanium jaw, eye and right side of my skull, I look pretty normal!

But I am human and, like anyone, I get down about these things. I have days that I don't want to get out of bed. Life is so busy and tiring. I wish I had someone to take care of me. But that is not the case. I am a mom and I have two kids to make a living for and take care of.  My kids are definitely what keep me going every day.

Thank God for them.

Surgery for the Titanium plate! May 2015

So it is time for the plate to go in! I am looking forward to it so much! I am also full of fear that an infection may set in...

We had to leave two days early to head to Milwaukee. Both parents were with me and the night we got there I had to go to the hospital for an MRI. The next day, I had blood work and meetings with my doctors. When I came for an MRI a few months prior, I was looking at the business cards as I checked in. One caught my eye: Dr Rovin! Dr. Kassam had finally talked my Marquette doctor into come to work with him! So this surgery, was going to be done by Dr. Rovin. My surgery was scheduled for 10 a.m. the next day.

During the meeting the doctors moved it down to 1p.m. I didn't love that idea, because I like to be able to wake up and go straight to the hospital. Keep in mind,  I can't eat or drink anything beforehand. I warned my parents that I may be a crabby bitch the next day! Obviously, there is nothing I can do about it, though. So, off we went with my soap scrub for my shower process that night and the next morning.

I had to take out my extensions for the surgery and they were going to shave the front of my head. I had asked the doctors at the meeting how much they were planning to shave so I had an idea of what to expect when I woke from surgery. They said from the top of the left side of my head, down to my ear on the right. And it would be about 2 inches thick. I made sure to ask them if they could shave as little as possible and they agreed and understood! I was finally getting my hair to a length I could work with and now it was getting messed up! I had plans to wear a lot of headbands and I cut a strip off of many of my scarves to tie on my head to help keep it covered. I would put the extensions back in also so the side that was shaved was hiding under the hair.

The day of surgery, I woke pretty late. Luckily, that killed a lot of time! I took my shower, and watched a show. Before I knew it, it was time to go! I didn't even have time to get crabby! Haha.

Off the the 3rd floor same-day surgery unit. I get checked in, get asked all the questions, and get my port hooked up so I didn't need to use an IV. It was hard for the nurse to access it (a certain size needle goes in and a sticky gauze is put over it), but after trying a few different size needles, she eventually got it. Then it was time to wait for them to take me into surgery.

My brother Kent from Appleton came to town, so he was in the check-in room with my parents and I. My mom's cousin was there also! She had come a few other times to be with my mom during surgery too.
We seemed to be waiting for quite a long time to be brought back. I was starting to get antsy. A nurse eventually came in and she told us that the doctors were in a surgery that was taking much longer then they thought.

So we were just waiting.

I was getting crabbier and crabbier!

We were in this small room with a curtain for the wall. There wasn't enough room for my crew to sit in there with me. And I was starving!

Around 6 o'clock the nurse came back in and told me that the surgery was coming to an end but the doctors think that we should move mine to the next day.

Fine. Just get me some food please!

I was told I can go home for the night or get checked into a room. I picked to stay because I was already prepared for surgery, my port was accessed, I was checked in and I wouldn't need to do any of that the next day if I stayed there.

I had to wait a bit longer for my room to be ready and during that time my dad went out and got food. My mom's cousin had brought brownies, so I ate a few of those and my mom also went to the cafeteria and got me something little to eat. I was not so crabby anymore! They told me surgery would be late morning and I would text my family to keep them posted on when I was going in.

Right after surgery they had the
incision covered. (And stapled to my head again)

Once in my room, my family left and I went to sleep. I was full and tired. The next morning, when I woke up, I watched show after show to pass time. Before I knew it, it was noon and I still had no word of when I was going in. My parents and brother eventually came. My brother is great at trying to cheer me up and keep me busy and entertained. Finally, a nurse came in and told me it was time to go!

Into surgery I went. It was only a couple hours and everything went great. I had a harder time waking from the anesthesia. I was very nauseous and threw up a few times. My nurse was one of my favorite ones that I had when I was in the ICU for my long stay.  A few days after I had thanked her for being a rockstar at taking care of me and I apologized for being such a mess! I was lucky to have her because shortly after that she started school to be an NP and was taking some time off of work!

This surgery was probably the most painful one for me. The brain itself does not feel pain. It has no pain receptors. But the scalp does. The titanium plate was put in above the brain, right under the scalp. My eye was starting to swell again. That poor eye has been through so much! I am amazed it still works. I had blood and antiseptic in my hair and all over my face. My head was shaved exactly how they explained it would be. There was a spot right behind my ear that was really painful, but I wasn't sure why it was in that area.

The drain tube was removed from
the top of my head and two staples were put in.

It was such a relief that my brain was now protected! My mom liked to joke that "she can now sleep at night." I don't think it was much of a joke though! I was very limited at what I could do during that time.

 I'd go to my brother and son's hockey games and have to sit up very high and keep my eye on the puck. I did not go to a single Tech game, and the only high school games I went to were playoffs at the SDC. I know my Dad told my brother (who was sitting next to me) to be on the look out for me, and of course a puck came flying in my direction! My brother instantly threw himself in front of me! Haha. Gotta love him. One hit and I'd be a goner!

 I never went out during that time either. I obviously wasn't going to go out drinking, but even sitting at the bar, someone's elbow could hit me, or my chair get knocked by a drunk or someone fighting and I could hit my head. It wasn't a chance that I was going to take.

Sometimes I'd be rough housing with Rease and my dad would say "take it easy Val, remember you don't have a skull." Sometimes I'd say, "yeah, yeah, I'm fine." But I understood where they were coming from!

The helmet could be burned! I could have had a separate party just for this. I never wanted to see that thing again!

My birthday dinner

I only was staying in the hospital two nights after the surgery. My friend Meagan was driving up from Florida and she stopped in to be with me for a few hours. It was so awesome to see her!

I was so afraid of an infection setting in! The doctors reassured us that everything looked great and I was good to go. We were only going to my Mom's friend's house at the lake, so we would still be close by.  It rained the next few days so we didn't do very much. I slept a lot. My eye was getting better every day! It was amazing to see how quick I was recovering from this surgery.

My brothers graduation.

My birthday was the end of this week and my brothers graduation from high school was the day after. I did not plan on doing anything for either of them because I knew I'd look horrible for both. But now I was rethinking that.

I had a doctors appointment a few days later and we got the clear to head home! I ended up going to dinner with my family on my birthday and to my brother's graduation! His party was scheduled a few weeks out so that if we had any complications, we had time to get back.

I needed to go back to the hospital in another week to have my stitches removed. I was not looking forward to getting them out since it hurt all the other times!  My friend Joanne came with me and we made a night out of it. We shopped, ate, and relaxed! The stitches were hard to get out be we got most of them!  Now it was time to heal and no appointment needed for 3 months!! The craziness was now coming to an end!

It is time to check out of the hospital!!

Well the day is finally here! 38 days later!

Can you tell how happy
I am to have this on?

I left that evening and I was going to my aunts house to stay for a few more weeks to finish up my IV antibiotics and I still had many appointments and radiation to do before I left the area. I was nervous leaving, but my Aunt Liza only lived a few minutes from the hospital, so that made me feel a bit better.

The famous helmet.
How have they not come up
with something smaller
and easier to hide?!

It was time to face the dreaded helmet.

I felt so stupid wearing it. But I just kept telling myself that I knew no one there. And I didn't care about my aunt seeing me with it on. I did not wear it in the house. Only when we would be driving and in the beginning, I'd wear it shopping or eating out. My aunt was worried about me not having it on because I was in her hands at that moment. Luckily, I had a jacket that my mom brought down for me with a huge hood on it, so I could hide the helmet underneath it.

(When I came down in October it was still nice out. I had no jacket, just a sweatshirt and I had flip flops on. Its the middle of December now and snow is on the ground!)

Leaving the hospital!
Wheelchair and a helmet.

Eventually, I would take the helmet off when we would walk into a restaurant. My aunt didn't love that idea, but I wasn't gonna walk in with it on! I'd wear it in the car, and she would find a close parking spot so I would take it off right before walking in. I had to be careful because it was winter, but Milwaukee didn't have a lot of snow.

My first day out!
Makeup, my wig and helmet on!

My aunt had an office that became my room. I slept late everyday. Got up to hook up a new IV and then would go back to sleep. I would sometimes go hangout on the couch and watch a show or movie. I'd find something to eat. Then I'd go back to sleep! This was my routine many days. One day we eventually decided to venture out to lunch and shop a bit. Christmas was right around the corner and I had shopping  to do still. In the hospital I had ordered a lot of it though and had it sent home. That was a good time killer for me!

The last of the stitches are out!

I finally took my first shower.  6 weeks without one!!! My port wasn't hooked up to the IV so I didn't need to have that covered. And my head was now allowed to get wet, I had stitches still but I could just dab them after to dry them. The only thing I needed to cover was my Picc line on my arm. I used saran wrap and it worked pretty well. I'd still try to keep it out of the water as much as possible though. An infection could set in if it got too wet so I was terrified! Showering was exhausting! It was a lot of work for me and the second I got out I needed to go take a nap. As time went on the showers got a little bit easier.

The scar down my right
side is very thick from
being opened 4 times.

One appointment I had was to remove more of the stitches on my head. It was so not fun to get them out. The nurses kinda had to dig to get them out. It was a huge relief when we were done. There were a few still left that they could not get but they would make their way out on their own.

I celebrated the day that I hooked up my last IV! It felt so freeing knowing that I didn't need anymore of that. Every 8 hours I needed a new one hooked up.

My bag of antibiotics 

(To hook up the antibiotics I had to clean the tip of my IV with an antiseptic wipe, then use a syringe of sodium chloride to flush it, and then hook the antibiotic up. After it was done, usually about an hour, I unhook it, clean the tip, flush it again and wait until I need to hook up another.)

The nurse came the next day and removed the Picc line. As she pulled it out, I was amazed at how long the tiny tube inside me was! Like, over a foot long! I had no clue it was like that.  I could finally take a shower without covering up part of my body!

The last thing left was to get radiation. Luckily, we had decided to do the Cyber knife treatment. It is one couple hour dose of radiation instead of going in for ten minutes daily for 6 weeks! If I needed the 6 week radiation, we were trying to figure out where I'd go to do it. I would either have to travel 2 hours each day. Or I could go live with my brother in Appleton and go to the hospital right there.  We stopped worrying about that and decided we would make a decision when the time came. Turns out we didn't have to decide!

My mask. I was asked
if I wanted to keep it,
but I said toss it away!

So, a day before radiation, I had to go in and get my mask made. It's a sheet of hard plastic that gets dipped into hot water. The water makes it soft and then its laid over my face and pinned to the metal bed I was laying on. I had to stay like that for a while until the mask hardened. This mask is to keep my face in the exact same place the entire time I get radiation. It is a very precise machine and it needs to enter certain areas only. The mask is kind of used like a map.

Another plus to getting the cyber knife, is that I would end up using less radiation then if I had the 6 week radiation. Your body can only have so much radiation in a lifetime and by getting less, that gives me more radiation to use in the future if needed.

I could leave right after getting radiation and head to home sweet home! My dad was going to come down and we would head out the next morning!

The morning I was supposed to get radiation, the machine was not working! Ahhhhh! Why does this have to happen! They said they would call me once its running and they would get me in. I kept my dad posted because I didn't want him to leave work to come down and then not be able to go home. Luckily, later that day it was up and running! We decided my sweet Dad would come down the next morning, grab me and turn around and head home! Being a truck driver and not minding driving, it was nothing for him to make the long trip in such little time.

The cyber knife machine

When I got into the radiation room, they asked if I wanted to play music from my phone. Any kind I wanted I could have. I decided to pass. I would just lay there and probably pass out anyway! They had me wear comfy clothes, and gave me a med to help me relax. They then hooked up my mask.

There was no moving for me the next hour and a half! The machine was quiet. It moved around above my head, but that was all that it did. My jaw started to hurt after a while because it was being pressed on by the mask, but I just pushed through it because I knew it was gonna be over eventually.

When I was done, my face had marks all over it from the mask being so tight on it! They said I may have a headache later, and some people get a bit of swelling on their brain from it. I definitely had a headache the rest of that day. I took some pain meds and slept. When I woke later that night I did feel quite a bit better.

The next morning, my dad was there at 10AM! We packed up the car, I had acquired a lot of things while there! Went down the a duffel bag and left with multiple bags! My dad wasn't making me wear the helmet for the drive. It was going to be so many hours in the car that it wouldn't be comfortable. We hit some snow along the way though so I threw it on at that point.

Finally home with my babies!

That night when I got back, my mom had me sleep at their house. I wanted to go home, but she was insisting so I gave in. My kids had slept somewhere else that night. My brother brought me home the next day and the kids were brought to me after school! It was an amazing feeling to be back home and have my kids with me! Christmas was 3 days away. I had the kids for two nights and then they went to their dads. I was sad that I didn't have them, but it was probably good because I got to rest a lot then.

Christmas with my family.
As you can see, I still have
a lot of facial swelling

In the past year, the kids had gotten so good at letting me rest. We hung out in my room a lot. Shaya would always ask me to play babies with her, even if I didn't want to, she would demand that I do! And one day, after being sick for quite some time she told me she was gonna go play babies while I nap. It was kind of sad realizing that she knew she better not ask me to play and to let me rest. I am so lucky to have such good kids. Rease is a great helper around the house. He helps his sister out a lot and helps with the pets too.  I was grateful that the kids were old enough to understand that I was sick and being away or napping is what I had to do and not what I chose.

Christmas with my kids was a few days later, but we had such a good time! We were very spoiled that year. Our electric company, UPPCO, chooses a family every year to buy gifts for, and they chose us. We had the gifts from my nurses, too. We were amazed and so grateful for everything that we got. I loved that the kids were being spoiled. They deserved it for sticking through such a hard year with me.

 Left is before chemo,
middle is after,
and right is after surgery and radiation!

My next surgery to put the titanium plate in was set for May. In the meantime, I was to take it easy and recover. I felt like I was looking better, but looking back at it, I still had a lot of swelling that needed to go down.  I had a checkup a month after I got back and it showed that the radiation had helped to shrink the piece of tumor left by my carotid artery! We were all so happy with that news! I started going back to work at the end of March. I would do only 3 hour shifts 2 or 3 days a week. I was so tired when the shift was over. My body was not used to being on my feet all day.

Easter morning in Florida.
The beginning of no wig or hat!!

We took a vacation with all of my family to Florida in April. Almost everyone in my immediate family was there. We had such a great time!

May was approaching really fast. I was very excited to get the plate in but, of course, super nervous about another infection setting in. I was wearing my helmet sometimes. Usually only when I would drive. I always joked that I was going to paint it and put a pair of goggles on it so it looked like I was heading to the ski hill. The area where the plate was going is soft. There is scalp, and then brain. You could see my brain pulsing through my skin. It didn't feel weird, but it was the reality that my brain was right there and not protected at all. I was worried that flying may be hard to do with the pressure being built up, but I couldn't tell a difference. And going through metal detectors, everyone thought that they would go off as I went through, but I don't have metal in my body just titanium and that doesn't go off when going through!

All of my family that was in Florida with us!

I was still on my meds. One was a seizure med that I had been on since last May and the other was the med to help calm the nerves in my face. I still could feel my face being crazy, but it wasn't nearly as bad as it had been.  My mouth was still numb on the right side and same with my lip. There were some other numb areas on the right side of my face, especially one near my chin, but other areas were getting a little better!

Eating was hard but I had gotten more used to it. My jaw was still off from being put back together with titanium. Because of the numbness in there, it hurt to chew on the right side. To this day, I only chew on the left said and will probably have to do that forever. My mouth doesn't open very wide either, so certain foods are hard to eat. Especially anything really crunchy! (Corn on the cob is out of the question. I cut it off and eat it with a fork.) Foods that are really cold, like ice cream, hurt because my nerves are so sensitive. Taking my pills everyday, sometimes I'd think I had swallowed them, but they would be sitting in my cheek on the right side and I had no idea until a horrible taste started in my mouth and then I'd look in the mirror and see the pill still sitting there.

I kept progress photos of my hair.
The top left is in September,
top right is beginning of November,
bottom left is December and
bottom right is February after I colored it brown.

Since the sinus surgery, I noticed that my taste wasn't as good as it used to be, but I didn't sneeze nearly as often as I had before. I couldn't tell that my breathing was any better though either.   Before my October surgery, I felt like I had a bad smell inside my nose and it was always really stuffy. I had to blow my nose so many times in one day.  My snot was always green. When I woke from that surgery, I could instantly tell that I could breath better and the smell was gone. My doctor said that it was being caused by the tumor. He had cleaned everything out from the inside and it felt and smelled so much better!

As my hair was growing back, I started to have fun with it! When it was about 2 inches long I colored it to my level of brown but a much warmer and prettier color! I got bored of that fairly quickly and decided to be a blonde! I eventually got extensions put in on the right side to help hide the area where I didn't have a skull. It was sunk in a little bit and I felt like it was so obviously looking that something was wrong. So when my hair was short, I never wore it without at least having a hat on. If I didn't have a hat on, then I had my wig on. But when I was getting close to head to Florida I knew I had to do something because it'd be too hot to wear a wig or hat down there! So the extensions gave me more of a style and they also cover up the side I didn't want people to see.

This is in the end of February
when I colored it blonde.

I was nervous to go without a hat or wig, I had one on my head for 7 months by this time! I knew Florida was a good time to venture off without one though since I'd again be somewhere that I didn't know people except for my family. The amount of curl in my hair was insane! I've always had curly hair, but more of a wave. Between my natural curls and the chemo curls, I had the tightest curls! When I got to Florida, it took a few days of styling to understand what I needed to do. I had never had hair that short in my life! But thankfully, the stylist in me figured it out! I felt naked and weird the first day with no hat on. But each day got easier and easier for me.

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!