Surgery day and the first few after - May 1st 2017

The night before surgery is finally here! The routine is the same as all the other surgeries - wash with a special soap, sleep in clean clothes and clean sheets, shower again with the soap in the morning. I had no problem falling asleep that night. We had to be up at 3:50 to shower and get ready to leave.  Before we knew it, it was 4:40 and out the door we went!

The soap. Prepackaged- a sponge on one side,
 scrubbies on the other and a blue little
 pick to get under your nails.

Off we go to the hospital!

When we got to the hospital I was brought back right away to get prepped. They took my weight, did a pee test, listened to my heart. Then they gave me a gown to put on and wipes I needed to scrub down with first. I never like these wipes. They are warm which feels good, but instantly my skin feels sticky and cool. BRRR! I get the gown on, hop in bed and the nurse brings me a warm blanket to put on.  She asked me all kinds of questions and then it was time for the IV. I told her, the big IV's don't go in so easily for me. She said there was a note of that in my file! First she wrapped my arms in warm towels to help get my veins to pop. Then it was go time. She got it on the first try!! I was relieved and I think she was too.

The lovely wipes. One
for each arm, leg, 
stomach and back.

My parents were brought back around now and a neuro team that hooks up a bunch of wires to me were in the room too. A few minutes later Dr Corsten came in, put an X on my right side and said he would see me soon in surgery. The anesthesiologist walked in and introduce himself and explained that he would be there with me the entire time. Then two cute nurses came in with pink hairnets on, and said it's time to go! She handed me my blue hairnet, said she should have brought a pink! I laughed and said the blue will be just fine!

Our pic before surgery that we always take!

We strolled into the operating room, I moved from my bed to the operating table, nurses introduced themselves to me, an oxygen mask was put on my face and I was out. That was by far the quickest I have ever been out. Next thing you know, the anesthesiologist was trying to wake me up. At that point, it is so hard to open my eyes. I mumble something to him and that is all I remember. I was moved to a recovery area for a while and then brought back to my room. I remember looking at the clock, it was 2PM. I also remember sleeping and waking myself up from snoring! All of a sudden after a few hours of that, I was finally feeling awake. Sometimes this is when I get nauseous. Or have a super dry mouth. This time I had neither. I felt very good, just tired.

When I was brought back to
my room after surgery

Shortly after this nurses came in to ask me questions and sign a paper. I needed help from my parents answering them because I was still so groggy! Then a PT came in and wanted me to get up and go for a walk. I was thinking this is way too soon! I assumed we would be doing all of that the next day! But I wasn't going to tell her no, so we did it. My parents and bro went down to the cafeteria while I did this. My legs were weak and shaky. I had to stand while she put a belt on me, took a seat to rest for a minute after that and then got up to do the walk. We did one circle around the ICU. I was tired but I did great and passed with flying colors! :) She had a few questions for me and after that she said I was cleared by PT and OT.

That first night I also had an MRI done. I fell asleep during it which can be very rare in an MRI because they are so loud! I usually have padding on each side of my head so I don't move at all but with all of the fresh stitches we decided against it. It is hard to stay perfectly still while sleeping! I did my best and the tech said he did not need to redo any of the scans, that means I was still enough throughout it all!

So I just thought I had a pill stuck in my throat... but now I'm not sure if I did. Ha. Does that make sense?! My speech therapist came in each day with different foods and would watch and feel as I swallow.  She started with clear liquids then thicker liquids and then something hard. She would have me use a straw, spoon and/or nothing. They wanted to make sure everything was working properly and I was using the right tubes for the right things! Well just now, I took the pill and I felt like it was lodged sideways. I was drinking my water but that didn't help so my nurse got me applesauce. Maybe the thicker liquid would push it down. Well, here I am ten minutes later, and still feel the same way. But it's confusing because the pill would have disintegrated by now right?! Hmmmm. I wasn't worried about it because it was just a pill, but it shows me that I need to be very careful on what I do eat.... just in case that decides to happen again! I think the increase of swelling on my neck is pushing on it so it makes swallowing more difficult right now..

This was the other morning in the hospital. Since then I have had many problems with my throat but I am now kind of used to it. Every time I swallow my throat feels weird. Like something hard or scratchy is in it. Sometimes it gets so dry that I feel like I can't swallow! And now before I take a pill I make sure to swallow a lot of water first to get everything moving correctly. This morning when I woke, my voice is barely here. Everything is weak. But my swelling is at it's worst right now, so every day ahead it should start improving and hopefully the throat issues will subside. And that I get my voice back soon!! How can I yell for my Mom without a voice!?!? Haha

The swelling started near my eye, and
worked its way down my neck.

The last evening in the hospital:

I'm kind of crabby right now. Tired because I can only sleep an hour or so at a time and I went too long without my pain meds so now I'm hurting. I was counting on my favorite medication, dilaudid, which is given through an IV so it kicks in right away. But the plan right now is that I'm leaving the hospital tomorrow so I need to only be on oral meds that I can take at home. To make sure I can manage the pain on my own. I totally get it, but I'm frustrated about it too. Oral meds can take quite a while to start controlling the pain.

My face is getting more swollen by the minute so my eye is closing more and more. Makes seeing hard. Dr Kassam said no steroids (which would help with swelling) because it increases your risk of an infection. And because of the nerve being messed with, my eye isn't working how it should right now. It blinks slowly, and does not shut all the way. So it's either dry or watery and it's blurry. Sometimes when I close my eyes, I put my finger over it to hold it down. I am one of those scary people with an eye part open while I sleep!

The right side of my lips -top and bottom- do not work right now. Will they someday? We hope so. Is it guaranteed? No. So that's a scary thought. I might not have a normal smile ever again. Even a little improvement would be okay. But right now it is VERY dramatic. Makes talking hard, eating hard, I can't drink unless I have a straw. I can't even lick my lips! Everything feels foreign to me. I try to make it move, but it just won't. I can't flair my right nostril either! Or move that cheek or eyebrow. I try to, and it feels like I am, but when I look in a mirror, it is not moving. Nothing is moving.

My crooked smile.  #8 is the parotid gland that was
 removed and #5 is the nerve that
had the most damage done to it. 

Everything I eat is on the left side. And yes before this surgery I was only eating on that side, but my lips were not numb before. So I can't suck on a straw on the right side, or use a spoon or fork on that side. I can't drink out of a cup because it'll pour down my face. No hard foods, because that causes pain in my jaw. It's a whole new world of getting used to.

Yes, over time parts of this will improve. But it's hard being in the moment and believing that will happen.

I have over 50 stitches in my head. My neck is very tender from stitches and the tube. I had the tube removed earlier and that didn't hurt at all but it is sore now!  My ear is draining blood, we aren't sure why, but just watching it for now. The lobe of that ear is numb and will forever be that way. But that I don't care about! Kent jokes that I can now get many piercings in that ear and not even feel it. Haha. True story, but I think I'll pass. Lol

The tube being removed. One stitch is holding it in place.

The tube once removed.
That whole thing was inside me.

My head has a lot of crusty blood spots on it and that is from being pinned into a holder for surgery. It kept my head pinned in the same place so there was no movement going on at all. Some of these spots are tender and others do not hurt at all. My hair is hard and nasty, must be blood and antibiotic cleansing soap. I plan to take a shower later, but that takes a lot of energy! So I am waiting until I feel up to it. I can wash my hair with baby shampoo. The stitches can get wet, but only from water pouring down on it. No soaking or rubbing that area at all. When I get out I can dab it softly with a towel to dry it.

My hair is pink from blood

I have two IVs and a blood pressure cuff. An oxygen monitor on my finger and 6 cords connected to my chest to watch my heart rate. I had a catheter during surgery but removed shortly after and a little catheter in my wrist to get my blood pressure and to draw blood from it during surgery whenever needed. My legs have the cuff things on them to keep blood clots from happening. The sticky fiducials were removed, but the marker circles were still on my face. A few of the fiducials I found in my hair! I have little scabs and dried blood everywhere on my face!  I have bruises all over my arms from the IVs and blood draws. I definitely look like a warrior! Haha.

Heart monitor cords on my chest

Oxygen on finger, IV on my wrist.

Bruised wrist from all the pokes.

IV in upper arm, bandage over wrist that had catheter in it.

Surgery went great and doctor Kassam was super happy about it. He removed it all! We have had zero talk of radiation or chemo yet but I'm hoping we can save that for a different time if needed down the road.  After surgery my Mom asked him if this was going to keep coming back and Dr Kassam said he didn't know, but that he isn't going anywhere. He will be here to help us. Today he came in to check on me and held my hand the entire time while he explained our story to someone who didn't know it. He has a special place in his heart for me! I feel so lucky about that. And every room he puts me in, is brand new and huge. This whole unit was made for him and his patients.  I couldn't be treated any better.  Everyone is truly great.

The neuro ICU has glass walls so the
nurses can see their patients.

Dr Corsten came in today too. He said Dr Kassam did an amazing job removing the tumor in a very complicated area. Dr Corsten removed the margin around the tumor and it all came back clean!  He explained that we did not need to use the thigh muscle because there was a muscle in my neck he was able to flip around and use. He thinks it will be enough to fill the area in, but that is something we will see over time. Once the swelling goes down we can make a decision about how it looks.  He explained that the lower facial nerve that moves my face had to be stretched really far to make room for Dr Kassam to do his job. They did not cut it which is great but this nerve doesn't like to be messed with at all so it isn't liking that it was stretched out. He said the upper portion, near my eye and nose, is going to slowly come back. Which nerves can take weeks to heal. But the lower area, near my mouth may not. All I can do is pray, pray, pray, that there is some improvement over time.

My mandible (your lower jaw bone) was removed to get to the tumor, a bigger portion than they had thought needed to be permanently removed. They added pieces of titanium to put it back together.

My parotid gland was also removed. I haven't got a lot of information on this yet, but it is a major salivary gland. There is another on the other side and smaller ones throughout the mouth area too.

When nurses and/or doctors come in, they comment on how they love seeing our happy room. We are all just sitting around chatting. I have heard this every time we are in the ICU.  My case is different.  We look happy, and are happy. The other rooms have stroke patients or another neuro problem and most are asleep with breathing tubes in.  It looks like we are the lucky ones, which we are, but at the same time, I am in here because I'm fighting a deadly disease. Where the others may one day heal from their problem. Hmmm.

It sounds like I am leaving tomorrow. Dr Kassam wants me out of here so I don't get an infection! He thinks the chance of getting one in here are much more than me being at home. We will go back to Peggy's and stay there. I have my own room, it's comfortable and her house is beautiful. Plus being there my mom has a partner. I do a lot of sleeping the first week after so I like her to have someone to keep her company. I know my Mom is worried the whole time, she tries to stay calm for me but I can see it is hard for her! She does great checking in on me and being my maid! My Dad had to go back home today. Kent was also here for the night so it was great seeing him! Both my Aunt Liza and Jaclyn and my Moms cousin have came by to visit too! There is talk of my baby bro Brendan coming to see us in a few days which would be awesome because he has not been home since Christmas!

 Kenny can be quite entertaining! Haha

Next Tuesday we will see Dr Kassam, and if all looks good we will get to come home! And then in a week we will be back down to get my stitches removed.

The worst part should be over, and the healing should start now!

The few days leading up to surgery! April 29, 2017

May is brain cancer awareness month

Hello! I am in Milwaukee at the moment staying at my Mom's friend, named Peggy's house. We came down bright and early Friday morning because I had tests that afternoon.

We stopped in Green Bay and ate a late breakfast/early lunch because I needed to stop eating 3 hours prior to getting a CT scan done.

Then we stopped at a few car dealerships in Milwaukee near the hospital because my parents were looking for a new car for my brother. Before we knew it, it was time to head to the hospital.

My first appointment that day was with Dr Corsten to talk about what we would be doing and signing the consent form with him.

Surgery is estimated to be 6-8 hours. He said that we will be going through the same incision we had for the previous surgeries but this one is going to go a lot farther down my neck too. The facial nerve is right there and they will have to move it to the side as they work. The nerve does not like to be moved, so after surgery but before the stitch me up he can test it and give me an idea on if it is going to quickly go back to working, slowly come back or if it is too damaged and may not work anymore.  Of course this makes me a bit nervous. I have a lot of nerve problems in my face as it is, but its hard to tell. Most of the areas move okay still so I would hate if part of that side doesn't move at all!

Then he explained to me that once they remove the tumor and everything, they may need to fill that area in. There is a muscle in my head that would normally be used for that area, but guess what? It has already been used in my head! Along with the fat graft from my stomach! Since those options are not available, they will go into the side of my thigh, remove muscle and veins, and put those in my face! They take a piece of skin from my thigh too that is still attached to the muscle and it is added somewhere on my neck. By doing this, they can watch the skin. And by being able to see that skin, they will know if the muscle and veins are alive and doing their job. Crazy!  He said usually they overfill the area because it settles in overtime. My face may not be proportionate for a while.  He did mention that if they are unsure that I need this, they may wait until I heal and do it at another time.

I am hoping it is all done in one surgery though. And sadly, Dr Corsten is moving to Texas in a month. So I feel lucky that I still have him for this surgery, but I also hope he is here to do this other part of surgery if it doesn't happen on Monday.

After meeting with him, I went down to a different floor and had pre-surgery tests done. First was blood work, then a pee test, then I had an EKG done, and after that was a chest x-ray.  All of those went well and it ran very smoothly. I had it all finished in a half hour!

After that, it was time to head into a CT. This is the appointment with the Fiducials. The first thing the nurse did was put the little lifesaver looking stickers on my head. Two above my eyebrows, one on the top of my forehead, two in front of my ears, two behind my ears, two on the back of my head and one on the top of my head. The three that are in my hair, had to first be shaved before the stickers went on. Then she drew around them with a marker. I can not wash my hair or get my head wet at all. I am wearing these all weekend! Normally they are done the night before surgery but since I need to be at the hospital at 5AM Monday morning, this is as close to surgery as we could be.

Once the stickers went on, I was put in the CT scan for about 5 minutes. Then I was free to go! The stickers are to guide robotic arms during surgery. I am not sure if it is a new thing, but I have never had these at any other surgeries of mine.

Luckily I had wore a sweatshirt with a hood on it, and I also brought a thick headband into the hospital with me because I was prepared to hide these things! All weekend I have been wearing hats, headbands and scarves.  Today we went out shopping for a bit and I wore a scarf. I told my Mom her job was to worn me if one of the forehead stickers were showing! Haha. She failed once, but other then that she did well!
I usually wear something on my head even when we are just at the house. The stickers look ridiculous. Lol. So I prefer to have them covered. They aren't too uncomfortable. There are times I want to itch where one  is, but then remember that I can't!

Check out these beauties!

                       

                                                             
                  My ways of hiding the stickers!

We don't have a lot planned for tomorrow. Church and then an early dinner with my Dad's sisters. Yesterday, April 28, would have been my Aunt Liana's 40th birthday. This is my Aunt who passed away from brain cancer. We are going to celebrate her birthday tomorrow with everyone.  My papers say I can't eat after midnight, but with my surgery being so early the next morning, I feel like that is not enough time without food so I am going to go 12 hours without it which is what I usually need to do.  Eating too soon to surgery can cause you to be nauseous when you wake up. And I would do anything possible to help keep that away!

Aunt Liana

 I think this surgery will be more painful for me. A lot of my head has become numb so that helped with the past few surgeries. But my neck has no problems! So I will definitely feel a lot more there, and my thigh will be sore and weak afterwards Dr Corsten said too.

We had a potluck at work for me the last few days, and I have gotten many messages, cards and some flowers, food, a USB with shows and gifts from friends too.  It was so nice and thoughtful of everyone!

I am ready. I wish surgery was tomorrow. I want to get the ball rollin. I want to be on the road to recovery. I want to know what the next chapter is. The last few days of prepping before surgery are the longest. Two more sleeps and I will be there!

Look at this crazy group of girls wearing "fiducials" for me! Haha, love it!

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!

Scars, meds and an ENT appointment - October/November 2016

I have scars everywhere. I used to hate them, and want them to be hid, but I now don't care about them at all. They are battle wounds. There is a story that goes with every scar.  It makes me who I am.

I've had a scar hiding in my hair line since I was 22 months old from my first craniotomy. The only people who knew about that one is if I had told someone, or my hairstylist. It was so easy to hide it, I almost couldn't find it myself sometimes!

I had stitches on the back of my leg when I was 11 from falling onto a log that had broken branches sticking out of it. That scar, is a big circle but it's on the back side of my knee so I don't see that one and forget it is even there!

These are the two scars that I grew up with.

When I had my children I had c-sections and have a scar from that too, but of course that one is hidden also!
So for most of my life, my scars were out of site-out of mind.

Then, the cancer happened!

The first scar I got was my port incision on my chest. There were two spots opened but one was so little that the scar is almost impossible to see.  The other, had to be opened to put the port in, and then reopened to remove the port. That is probably my most visible scar for the world to see. Anyone who has gone through cancer, or has someone close to them who went through it, knows what that scar is from. We all have it. (Anyone who has a port, that is.)

Before and after the port came out

Hatd to see but there is a dot above my finger

Looks pretty light here, much pinker in real life!

The next scar I got was from the craniotomy. The doctors said they were going to go over the same incision I had when I was young. But this time it was brought down to the bottom of my ear.  After every surgery due to the infection and needing the titanium plate, the incision was reopened. The left and top of it is pretty skinny still, the right side is very thick and very close to my hairline now. At first I never wore my hair in a way that the scar was visible but now I am to the point of not caring! And it makes good conversation for anyone who asks about it! The incision near the bottom of my ear did heal really well though.

This side of the scar looks great. Skinny and hard to find

This is the thick side. As you can see, not much hair between my face and the scar

The scar going down the front of my ear looks great!

And sometimes the scar is visible depending on my hairstyle that day.

I also had at least 8 tubes coming out of my head. When they are taken out, staples were always put in. They tubes left decent size circles on my head. Some are on the top, some on the side.

One of the drain tube scars

I had a fat graft taken from my stomach. It is about 4 inches long. I've never heard of one being done like mine. Others that I know that have had one, have an incision that is not even an inch long and removed the fat like they do with liposuction.  This scar is in a crease of my stomach except for one end that swerves down. Depending if I have a tan or not makes it more visible.

 

The fat graft since healed

I have a scar on my inner arm from my picc line. This scar wasn't very big, and it was shaped like a circle. Since then, I've had a tattoo done on that spot and the scar is covered by it. So that one is camouflaged! My cousin Jill had wrote a cute saying on a piece of paper and posted it on the facebook. I loved the saying and decided I wanted that as my "cancer" tattoo.

  

  

"Feed your faith and your fears will starve"  

After I was out of the hospital I had the spot on my forehead removed that was basil cell carcinoma. The scar is there, but it healed really nice and unless you're looking for it, you won't see it.

 

As a precaution after all of that cancer, I had a mole removed on my chest. It luckily, was not cancer. It has only been about 6 months, so I think over time the scar will get better looking, but right now it is still pink, and kind of hard.

 

Port and mole scar

My daughter had a mole on her calf that I wanted removed because it just didn't look right to me. And after everything I went through, I felt it was much better to be safe then sorry.  When the results came back, it had abnormal cells in it, so they had to go back, remove even more around it to make sure they got it all. She was 7! The thought of it becoming more made me sick.  Her skin is so perfect and it has not even had many years in the sun. I was shocked! And so relieved that we were proactive and had it removed.  The calf is a hard area to have stitches. The skin is so tight, and every step she took, moved it. So she has a nice big pink scar from it, but now she is just twins with her mom. :)

I haven't had many discussions about the meds I have been on and figured I should touch on that subject.

When I found out about the mass I was put on an anti-seizure medicine right away. Seizures are hard on the body and if you have one, you can not drive for a while after that. I couldn't possibly not be able to drive! I took that pill religiously.

During chemo I was on many different meds, four were for nausea, two liquid meds for my mouth sores, a shot to boost my blood cells. The nausea pills saved me. I had very few upset stomachs. Nothing cured the mouth sores but the two meds did help it and the second time around was a lot easier because I was able to start the meds right away.  There were times I was antibiotics for different reasons and steroids too.

When I woke from surgery and had my nerves going crazy on my face I was put on a med to calm them. I was on that medication for over a year along with the seizure medicine. I had no problem starting either of the meds. I didn't feel any side affects at that time from it.

During my hospital stay, I was on the antibiotics the entire time. After getting out of the hospital, around New Years, I noticed my fingers near my nails (cuticle area) were very sore and some were red and swollen. Puss would come out of them. My pinkie went through it twice. My mom said "get to the doctors"! It was an infection of some sort so we wanted that figured out right away. I went into the doctors and was put on a medicine to counter-act the antibiotics. My body was having a reaction from being on them so long. Just a few days of being on the pills my fingers felt so much better. But after that I did lose my pinkie nail and it took over 5 months for that to grow back!

In May when I had the titanium plate put in I was put on another antibiotic to prevent any infection after surgery. I had no problems with that one. I was also on steroid meds after every surgery to prevent my brain from swelling.

Finally summer, a year ago, I was allowed to get off the seizure and nerve med. I was so excited to not be on any pills anymore!

Sadly, I was having bad withdrawls from getting off the nerve med. It can cause depression, insomnia, night sweats, headaches, muscle aches, vision problems. I had all of the above. I wasn't myself at all. I was happy being at home and doing nothing. The spark in me was gone. I didn't want to be around people and any chance I had to take a nap, I would do it. Many mornings it was a struggle for me to get out of bed. If I needed to smile I would, but it was hard to even do that.  I had an appointment with my doctor and while there, she decided to put me on an antidepressant. I had a really hard time deciding if I wanted to go on this. I had just been cleared of meds and here I am, about to start a new one that I need to take every day.  I was also scared of all the side affects. I held on to that bottle of meds for over a month before I finally bit the bullet and took it. But, it slowly made a world of a difference for me.

I also get anxiety attacks. The med I am on has helped with those and I have about one a week, which is much less then before and now I can feel my body fighting it off so it isn't as bad. It comes and goes pretty fast. I do have another med on hand if I need to help calm down these attacks.

It so frustrating dealing with both of these things. I never had any issues with this before cancer.  Trying to live knowing that there is possibly cancer still inside me is hard enough, but I never thought I'd have these kind of problems to go along with it.

 I try to put on a brave face and just smile everyday. Fake it till you make it right?!

The left over meds.

Last week I had a check-up with my ENT that comes here from Marquette. I see him every 6 months to make sure the tube in my ear is still doing what it should. I have had no issues with it and my hearing has been great so I figured all would be fine. I was right, everything looked good. While there I brought up my sinus infections that I am constantly having. He said that they are normal to have after sinus surgery. Little pockets are made in the sinus cavity and snot gets trapped in it but if I try to us a Neti-pot daily it will help keep everything cleared out and I shouldn't have as many issues with it. So I guess its time to give that a try! I go back in another 6 months to see him again.

Waiting for the ENT to come in, hoping I don't get something shoved up my nose!

So for now, all is good on the home front! My appointments all came back great and I have until March when my next MRI check up is. In the mean time, I'll just keep living life and try to enjoy each day!