New updates, chemo talk and radiation recovery - November 2017

Here we are, beginning of November. I just got home from a trip to Milwaukee to see some doctors. I want to update you all on that but first I want to talk about radiation recovery and how I am doing since my May surgeries.

The other day we were 6 months out of surgery, and 7 weeks out of radiation.

 My mouth, from radiation, is still horrible! It is better then it was 7 weeks ago, but it is no where near healed and I thought by this point I would be great. Or at least eating whatever I want by now. That is definitely not the case though.. I still drink only water. I have tested a few teas, hot chocolate and coffee. Most hurt. First few sips of it might be okay but then after that I am done and throwing it out. I did do a coffee yesterday and the day before and i actually got to finish it! I need to wait a long time to start drinking it though because anything too hot hurts too. Nothing with carbonation either.  Food, I try to stick to soft solids. Nothing super crunchy or sharp. Nothing spicy. Nothing acidic. Nothing to smooth(like soup) because then it travels over to the "bad" side and it starts to sting. I can talk a lot better now then I could, but if I do too much that still hurts also!  When I look in my mouth, it physically looks better, but the painful feelings are still there. It is basically a never ending nightmare.


I have recently cut down on my pain meds so that may be a reason I feel like my mouth has been hurting more then usual lately. Every now and then I do have a good day though. Two days ago I took two pain pills total all day. I used my numbing rinse many times but the fact that only two pills were taken is a good sign! I live off of the numbing rinse though! Anytime my mouth starts acting up I can swish that for a bit and then I'm good to go for a while!

Most of the swelling is gone. I have some in my cheek still but I imagine that it just needs more time like my mouth does, to heal.

I think it has been a few blog posts since I have updated you all on my facial movements and the nerves around that area.  Some areas are moving so much more then they were and I am so grateful for that! My cheek moves a lot, my nostril moves and my top lip moves quite a bit too.  My bottom lip moves some, but I think a lot of it has to do with my cheek pulling it into a smile! The lip itself is 100 percent numb to the touch. My eyebrow still has zero movement at all. Being 6 months out, I have a hard time believing that it is ever going to move.  The other areas have had some sort of improvement and I believe that they can even improve more then where they are now. But I don't have that hope for the eyebrow.  Sometimes when I get down about how my face looks, I try to remind myself that at one point, there was zero movement on that side AND my eye was stuck open! That is usually enough to help chipper myself up. We will see how my nerves react to the winter.  In the beginning I only wore tank tops so nothing was touching my face or neck, but now I can do a regular neck shirt.  We will see about scarves thought. They may be too much on my face... When I get the goosebumps, my teeth nerves freak out and they start to hurt. It only last about 30 seconds and then is gone, but think how often the goosebumps happen during the winter!!

My neck is still very tight when I turn to the left. My mouth also has a hard time opening real wide. I blame some of that on surgery, and some of it on radiation.  One of my nurses recommended that I get some help from PT for both of these problems. They will show me some stretches to do and some massaging techniques. Both to help loosen the problem areas.

Incision is looking good, some swelling
under my chin, and on my cheek still.

My energy I have noticed has improved a lot more recently. I don't take naps during the day anymore. I can function even if I only end up with 6 hours of sleep the night before.  The most I work is still only 5 hours a day. I wish I could add an hour or two onto that but my back physically wont let me. I would love to start exercising but my mouth makes that impossible still. It either starts hurting, or the nerves in my mouth go crazy and that makes my teeth feel like they hurt. It's a slow process of recovery...gotta deal with one thing at a time and right now that is for my mouth to heal up. Because then I can start eating more, then I can start exercising, then I can start working more. It is like a chain reaction!

Every two weeks I have been seeing my Marquette ENT and my ear is finally making progress! I do not need to keep cotton in my ear to catch any fluid. Every time I have seen him, my ear has been too swollen to actually see far enough inside to see what is going on. He wants to make sure the tube is in place. If not, that could be part of the reason why I can not hear out of that ear yet. But more recently we have seen progress. The last time I saw him he said he was happy with what he was seeing, not quite to the point he can see the tube, but a lot of healing has happened. And more recently, my ear will pop and I can actually hear out of it for a short while. So that is a good sign! Means it still works like it should.  Two days ago, a different Doc looked in my ear and he saw the tube! I see my ENT in about 3 weeks, but part of me wants to call him up now and be like, Guess what!!!!

So, now onto my most recent appointments in Milwaukee.  3 weeks ago my Mom and I went down for my MRI. I had it the night before I met with my Doctors. It was another long one, over two hours. On our walk in the hospital to the radiology department we came across a sign pointing into a room that said "Brain Tumor Support Group". I wanted my mom to go sit in there and listen while I was in the MRI but she said no!

Anyways, the next day we went back to the hospital to meet with the Docs.  I was 4 weeks out of radiation at that point and I believed everything was going to come back good. The docs had removed all of the tumor, I had radiation as a precaution. So chances are looking pretty good right? Well once again, we left there in a bit of shock.  The Doctors said they were happy with what they had saw on the MRI, but of course everything on that side looks different because of all the surgeries I have had.  They said there are a couple lymph nodes they want to keep an eye on. And after that they told me that they wanted me to get in touch with the head and neck oncologist. They feel I should further my treatment with them. I said, "Wait, you're saying that you think I should look into chemo?"  And their answer was, yes.   In my head at this point, I'm like, are you freakin kidding me!! I thought we were gonna come down for the scan and then hear,  "Things look good, go home and heal and we will see you back in 3 or 4 months for another scan."  Wrong.

We set up my next scan with them for the end of January and off we went.  Not even ten minutes into the car ride home I had a call from my nurse and she had asked if we left the hospital yet. They spotted something in my temporal area and they wanted me to get a CT scan so they can have a better look at it. I had told her we were already headed home and I wanted to make it back for my sons last football game. We then decided that I would get the scan done at home and have it sent down to them. The doctors also decided that the end of January was too far away for the next scan and bumped it up to the beginning of January instead. GEEZE! None of this makes me feel too confident.

A few days after being home I had heard from my nurse many times, just getting my info and checking in to see if I had set up the scan. I did eventually and about a week after being home I had a call from Dr Taylor's office, head and neck oncology. The nurse was very nice and her name was Valerie! It was a Wednesday and she offered me a 9 oclock appointment that Friday, or a 2 oclock the next Friday. Being that it is hard to drop everything and go, I picked the latter one.

My mom and I had just been there the week before, so I told her I will see about bringing a friend with me this time so she doesn't need to go! My friend Stacy had been with me from the beginning and she is an easy person to travel with so I asked her and she was happy to come along! We left around 8 Friday morning and ended up getting there with over an hour to kill so we first ran into the beauty supply so I could grab some things for work and then we went to Chipotle to get some lunch. Both places are on the same road as the hospital along with our hotel.

When we got to the hospital we went up to the 9 floor. I can't remember if I had been in this office before or not. I did see Dr Howard, an oncologist there the first time so I think I may have been up there once but I don't remember. We were brought back to a room right away, but then waited almost an hour before seeing the doctor. I had read reviews on him and a lot of people first mentioned how amazing and great he is, and  then said that they waited a long time in the office. So at least we were prepared for it! Once he came in though, he spent a lot of time with us. He had my files, which were inches thick! (I suppose that isn't surprising!) The nurses and anyone who popped in also mentioned that they recognized my name due to everything I have had done at that hospital. First thing he had me do was start at the very beginning and tell him everything. He wrote it down in his own notes and asked questions along the way. He also pulled up scans from previous surgeries as I was talking about it.

He explained that there are two small cancer areas in my temporal region. One is near my ear canal and the other is up a little higher. I am unsure if these were left from surgery, or if they are new growths since my last MRI.

After that was all said and done, he explained that they are going to take tumor samples they have from my previous surgery and run 4 tests on it in the hospital and send some more out for extensive testing. The tumor is being tested with different kinds of chemos and we will find out if the tumor responds to any of them. He explained that this will take a few weeks to get answers. And I told him I was good with that because I'd really like my mouth to be feeling better and get a little weight on before starting chemotherapy.  Plus, it gives me time to prep and prepare myself for another round of chemo! He said that he doesn't see a problem with me being able to get the chemo done here at our hospital. I really like the idea of that - Milwaukee can still call the shots, but it gets carried out here. Less travel, especially now that winter is upon us, will be good.

That brings us to the present. I am not sure how I feel about it all. Chemo wasn't the worst thing in the world for me last time. I didn't enjoy anything about it, but radiation ended up being much worse for me. With chemo, I would feel bad for a handful of days after getting it, but then I'd feel good again for a little while until the next round. With radiation, there was no good days. It just got worse and worse every single day.  The thought of doing chemo again doesn't scare me, do I like the idea of possibly losing my hair again?! No. I finally have hair that I can throw in a ponytail or do whatever with. Am I ready to lose it again, absolutely not. But, every chemo is different. There are hundreds of chemos out there. Some are IV's,  some are pills. Some you lose hair on, some you don't. Some you can take at home, others in the hospital. Some you take daily, some are once a week.  So it will all depend on what concoction I end up with. There is this new thing out there called a 'cold cap'. You wear these cold hats on your head while you are getting treatment and it is supposed to help keep your hair. The hat has to stay under a certain temperature the entire time though, so you have multiple hats on dry ice in a cooler, and you keep switching out the hats. What I have read from reviews is, that most people's hair gets thinner but they didn't lose it. I think it might be worth a try! Cold has some sort of affect on chemo because last time that I got it, I was supposed to suck on ice chips as I got treatment and that would help my mouth from forming sores.

So now we are back to the waiting game. Like I said, I am in no rush to get started with this. And in 1.5 weeks a couple friends and I are heading to Vegas. It was supposed to be a trip to celebrate being done with everything but now it has turned into a trip to have one last 'hurrah' before going back in for more treatment.

It is what it is...I guess I am a bit numb to this new news still. I don't really have a lot of feelings for what is going on right now. I thought I was going to be done, and I am not. I thought it was finally time to heal, and now it isn't. It is disappointing. And tiring...... 3.5 years I have been in this battle. I am lucky I had a break during the middle of it and I hope that I soon can have a break from it again. Could chemo be the last step in this round of fighting?

We will see what the future brings.

7 weeks out and gearing up for radiation july 18, 2017

Hello! Radiation is taking longer to get started then we expected. My Marquette radiation oncologist was out of town so things got backed up but we now have the ball rollin!

I went down 3 weeks ago and met with a nurse and went over my health history, I watched a movie about radiation and she explained everything we were going to do. Then the doctor came in and we had a little chat. His name is Dr Baer and he was very nice!

The next weekend was the 4th of July and I had all kinds of family in town. It was so nice to be able to see everyone and get together! Some days I needed to sneak away for a little nap and then come back to all the action. Luckily the weather held out for everyone!

Dr Baer had told me that I need to see the dentist first because the radiation is going into my jaw area so it can affect my mouth and everything needs to be in prime shape before we start. I was told that after a couple weeks of radiation I will see a pink burn (like a sunburn) on my cheek and it will get brighter as radiation goes on and a few weeks after it is over it should go away. Because of this I need to use a certain soap to wash my face and be very careful about putting any chemicals on it. I also need to use baby shampoo to wash my hair too. Nothing with chemicals there either. And also no sun on my face!  I already wear a hat outside so that is no problem. I will probably develop mouth sores which I dread because that was a problem for me when I went through chemo and it is very hard to deal with! I will probably get tired over time but I won't be sick feeling from the radiation. I am also able to drive myself to and from if I want.

That Friday the kids, my brother Kent and my parents went to Mackinac Island for the weekend. We were supposed to go the first weekend of June and it was to celebrate my parents 35 anniversary but one of my surgeries pushed it off.  We all had a great time and it was a nice get away! Our weather was amazing and it all worked out perfectly!

As you can see I am smiling with
my teeth but it is not even.

Love my family

The next Tuesday I had my dentist appointment and then Wednesday I went back down to Marquette to meet with the technician who was doing the mask. She explained that making the mask would be about 45 minutes, she showed me the waiting room and the area to change into my gown. Every appointment for radiation I will go in there, change into the gown and then they will bring me back. I should be in and out of the hospital in about 30 minutes total. She explained that when we make the mask I will be on a table, the mask will get made and then I will go through the CT machine. Once everything is done, the 'planning' starts. About 10 days after I will begin radiation.


On Monday, I went back down to Marquette and had the mask made. I changed into the gown and the girls brought me back right away. They had my lay on the table and made sure I was perfectly straight.  No legs crossed, arms directly at my sides. My head was resting on this little stand and she tucked my hair underneath me. She put a pillow under my legs and then we waited for the mask to finish heating up. The mask is going to go to the middle of my chest. This way I don't move my neck around at all while getting the treatment. Once the mask was heated up, 3 girls worked together to get it on me. One was holding my hair down, and the other two were on each side of me holding ends of the mask. They pulled it down over me and snapped it into place around my head on the table I was laying on. The mask at first is warm, gooey and kind of wet feeling. One of the girls then makes sure it is forming to my face. She would softly push on areas around my face like my nose, chin,  my neck, the shoulder area to help it mold to me. The mask has little holes all over it so you can breath through it no problem. Your mouth is closed, but not clenched shut. Your eyes are closed too. This was probably on for a good half hour to make sure it was completely cooled. She marked areas on the mask and put little pieces of tape on it too. She took many pictures also. Even of where my hands were positioned on the table. This is the exact position I will be laying in every day.  Then it was time for the CT scan. This is the scan that they use to map out the exact route they are going to take with radiation. I met the girl who does the mapping - or planning, as I had said before. This takes them a few days to figure out and then it is time to get started. Once the CT was done, they removed the mask. She said it can kind of feel like it is stuck to your skin as they pull it off but we didn't have any problems with it. The only thing uncomfortable for me was my left jaw. The mask pushes my jaw in a little and after being like that for so many minutes it was sore. The right jaw is made of titanium so I didn't have any problems on that side.

The table I laid on to get the mask
made and the CT scan.

Always gotta do a gown photo!

This is obviously not me, haha, but this is exactly what
my mask looks like. And you can see it is pinned
to the table. 

They are kind of hard to
see in this little picture but I
have an imprint from the
mask on my face.I forgot I had it
and went into the beauty supply
afterwards. I wonder if they noticed!

So now we are back to the waiting game. The technician had said on average, long average, it's ten days before we start, which puts us at the middle of next week. I will get a call probably just the day before I need to be there for it. I am hoping to get my appointment time around 10:30/11. That way I can leave here around 8:30/9, get there, have the scan, and be home around 1/1:30. Then we still have the rest of our day to do what we want. I am at the bottom of the totem pole though so at first my appointments will be whenever they have an opening and as people finish and I climb my way up, I will get closer to the time that I want.  Every Friday we plan out the next weeks schedule and on every Tuesday I meet with Dr Baer.  Some days I will bring the kids with me and we can make a day of it, other days, when they are with their dad, I may stay down there with my sis-in-law to be.

Overall, things are going good. I can tell that I am getting more and more energy back. I have been able to get out and do some fun things! And my face is continuing to make improvements. I still need to use a straw with everything and eating certain foods is hard to do. I have zero movement in my bottom right lip but the muscles around it help to make it move for smiling. The right eyebrow isn't moving at all yet either. But we will just keep hoping for improvement!

Trying to smile with my teeth. It
is getting there, but not to my
likings quite yet!

Still no puckering my lips

Got the closed mouth smile down
though!

 The incision is doing good, I have no problems with it except for the neck area. A lot of the time it feels super tight and the only position that feels good is to have my head straight forward. The good news is, I can finally sleep on the bad ear! It doesn't feel normal, but it is now doable at night. I have no hearing in that ear yet, and it is still draining. I think I need to go see an ENT to make sure the tube is where it is supposed to be. My right nostril has a little bit of movement to it now, and my right eye closes all they way. It moves slower then the other and I continue to deal with water not draining properly out of that eye, so it still gets blurry but I am just happy that it is closing. Baby steps right!

 

I am grateful to be where I am in recovery. It has been a slow process but I am trying to be patient. I found a photo in my phone of me the day I was going in to get the fiducials put on. (Right before the May 1st surgery.)  I am being silly because I know I am about to go get these stickers put all over me. I look at my mouth and the way I have it open and I wonder if I will ever be able to do that again. I know its just a silly face, but it is the full blown, teeth smile that I am missing. I let myself smile with my mouth open now but unless it's a picture taken far away, I don't like it. It is not my normal, and I just wish it could go back to that. (This brings us back to the comment I have made before that what was once your normal, is no longer normal.)  I can't even look normal when I talk. All because that bottom lip doesn't move right. Everything is moving on the left side but not so much on the right. And I know, I am probably being hard on myself, but that is what everyone does right! I have my days that I just don't care what it looks like and then I have days that I am pretty self conscious about it.

The photo of me goofing around
before the fiducials went on.

I'm trying very hard to open my
mouth the exact same way as the
picture above.

I have just been enjoying family time and taking it easy. The kids and I have had a decent amount of days out in Twin Lakes and enjoying the nice weather when we have it! I know the drive to and from Marquette is going to get old, because it already is. But, it's a step in the direction of living a long and healthy life.

Two days before my next surgery - May 29, 2017

Tomorrow I leave for my next surgery. I need to pack for the kids and I still but with the last surgery being so close, I think it'll be pretty easy to remember what to pack.  Some bags didn't even get unpacked! And last time I packed everything that I needed - there wasn't anything that I wish I had brought but didn't. So now, I just have to remember to pack the same things as I did last! Haha

I am not sure how I feel about having this surgery. Part of me is ready to get it done and hopefully not have to worry about surgery again for a LONG time. I've become very used to hospital stays and recoveries so I don't mind that I have to have another. But, then the other part of me, wishes I didn't need to go in for another surgery. I wish I could just keep the healing process going.  This means I will be taking a few steps backwards..

 I am definitely not healed but I can camouflage it to a point now.  My incision is looking great and the pain is going down. The swelling is a lot less. My cheek is a drop puffy still but my doctor said it is going to look a little "chubby" for a while until the muscle settles into its spot.

One of the few times I left home

 My eye still does not close and that is hard to deal with.  It is blurry all the time. It makes a lot of things difficult! Driving, reading, watching a show and just looking around! I am constantly trying to clear it but it's impossible to do since it doesn't close. I have to be very careful wiping it also because I might scratch it. And looking at me, you can see when I blink that that eye is slow and does not close all the way.  I am very self conscious about closing my eyes! Sometimes I forget that it doesn't close all the way and people can see it isn't closed even though my eyes both feel closed to me. I had a massage the other week and I kept my eyes open the whole time. Haha. I wasn't gonna lay there with one eye open.

 I have a lot of 'nerve pain' on my neck and chin. It feels more like pins and needles but it's a constant feeling. Last time I was on a medication that helped with the nerve pain but I have decided to try and go without it this time. It is a very hard med to ween off of and I don't want to deal with that again.

The incision on my neck is tight. Every time that I turn I can feel it pulling and if I keep moving my head too much it gets sore. I can't have anything touching it either or it starts to hurt and feel uncomfortable.  A t-shirt even bothers it. So I usually always have a tank top on.

What a difference two
weeks can make!

Scabs are gone!

And then there is the right side of my face. I can move my cheek a LITTLE bit! That is the first progress of movement I have seen. It started about a week ago (two weeks out of surgery), and it moves a bit more now than it did then. No eyebrow or lips moving yet. If I make a small smile with my mouth closed, the right side moves up a little. I am not sure if it is the lip muscle moving or the cheek muscle that is pulling it up. If I pucker my lips, or try to smile, it doesn't work yet.  And that is the only movement I've got at this moment.

Trying to pucker my lips.
Right is doing nothing. As you can
 see the right eyebrow is down too.

The two things that I wish most, is that my eye would start closing and that my lips would start working. Out of those two, I'd pick my lips. I still need to use a straw to drink. And I need a fork for anything I eat. I tried to eat a piece of pizza the other night without one and I bit my lip pretty hard. So back to the fork I went! A few days later I tried to eat a burger and bit my lip again. Giving up on that for a little while! I'll stick to the fork. I am starting to talk better, the first few weeks, some words were hard to get out because I couldn't get my lips to help me pronounce them right. Smiling is another problem. I can't do it and look normal. If I do try to, I use one hand to cover the side that isn't smiling! ugh.

Hiding the crooked smile. Haha

I did a lot of sleeping in the first two weeks. Now, I am having a problem falling asleep at night. So it is late when I do and then I want to be sleeping in. Some days I take a nap and others I don't. But now when I do, I make sure it is earlier in the day so maybe I can fall asleep at a decent time. I know going in for this next surgery I will be back to sleeping a lot so I won't have to deal with the sleep problems for a few weeks again.

I have gone out in public a few times. It feels good to get makeup on and get out of the house, but I can only handle a few hours at a time. My body is tired and my neck is usually hurting after that. I end up doing a lot of talking with people which gets hard for my mouth, and I seem to move around to the point that my neck gets sore. And, it isn't warm here yet so I have a jacket on and that is rubbing on my neck! Not to mention that just standing anywhere for a little while is tiring for me. Now is when I would start doing yoga, or being more active around the house to try and work up some energy but with surgery around the corner I really don't see the point.

My ear is still a problem too. I don't mind that the whole thing is numb, but it feels heavy on my head. And it is still completely blocked. No hearing out of it what so ever.  I think overtime the hearing should still improve. Sleeping on that ear feels very strange too so I usually stay away from that side.

What I have heard about this next surgery, it sounds like Dr Kassam doesn't need to open my neck up again. That is a relief for me. The head surgeries are easier to recover from.  I hope that going in for this surgery, doesn't bring all of these healing nerves back to the beginning of the healing stage. This neck surgery is by far worse then the other surgeries. (Minus the infection surgery).

In a previous post I had brought up that the corner of the titanium plate behind my ear hurts. Since I will  be opened up for surgery anyway,  I'm going to ask my doctor if he can fix that area. I think if the corner is bent in a little, cut off or just filed down - the pain would go away. Sounds like a simple fix to me, right!?! It still hurts to sleep on that side, wear a hat or headband.

My parents and I will head down Tuesday morning and at 4PM that day I have a CT with the fiducials again. And then Wednesday morning I need to be at the hospital for 5AM and surgery is 6:30. Same as the last one which the time worked out perfect for me. I like going in so early, I don't have to sit around at all waiting until its time to get to the hospital. I feel like the prep time flies by and before I know it, I am in the operating room and going into lala land!

My cousins Ali and Maren have set up a meal delivery for me. It is very convenient the first few weeks out of surgery. The site is called Take them a meal (.com) and the password is 0521. I had to make very few grocery runs (usually had someone else run for me since I can't drive for a few weeks after surgery) and I had to put zero thought into what I was feeding the kids! It was super nice and made things a lot easier for me! I would have the table set and the food ready to go when the kids got home off the bus. We would eat right away and talk about their day. It was great!

My birthday was a week ago, I wasn't up for going out to dinner but we went to my parents and ordered pizza. It was prefect and all that I needed this year!

Birthday Dinner

The past few days have been a little rough for me. I am prepared for surgery and all. I know I need to go in again and then that is it for a while. (We hope).  But I am just struggling with this slow recovery process. The facial nerves that don't move at all are an adjustment. I am a patient person but this takes SO much patience! In a week, the improvement I see is very little.  The thought of going back to work and struggling to have a conversation with my clients isn't appealing. The energy that I don't have is hard too. How am I going to stand all day?!? I know I will start out with just a few hours a day, a few days a week. But it still seems a bit overwhelming. And when I am tried, the muscles in my face slack even more and it makes my mouth and eye more obvious that they aren't working right. I did take another 6 weeks off from work for this surgery so hopefully by the end of that, I am feeling up to it!

And that sums up the recovery process so far! Tomorrow we are onto the next Milwaukee run. Hopefully I am gone just about a week.  And then it is officially time to heal, heal, heal!

A week out of surgery & some very UNEXPECTED news! May 11, 2017

Alright! So all is going pretty well! The healing process is much different this time around because I have not had to deal with my neck being opened up too. It is very tender and stiff. I can't turn my head very far. The area around the incision hurts quite a bit! I just spent my first full day home, and now it's late at night and as I type this up, my kids are sound asleep on my floor. :)

I was standing outside when they walked down the road after getting off the bus. I was doing a little dance for them. Haha. Shay came running up and gave me a big hug, and eventually Rease got to me and we had a big hug too! You could see the concern in their face as they looked at me. The swelling, the right side not moving at all and of course the incision area. It's all pretty scary - for anyone to look at, but especially kids. I just reassured them that eventually a lot of this is going to get better. It just takes time. The last time I looked like this I was in the hospital for 6 weeks. So by the time I got home to my kids, my swelling was down a ton! Rease asked if I was joking about the right side not moving. I said, "No baby, that side really isn't moving. I wish it were a joke."  :(  I HATE that they have to go through this. I hate that I have to leave them for these long lengths. I hate that they have to see me in horrible conditions. I don't want them to be worried or feel sad for me. I am still the same person, I just look different right now. And no, maybe the right side, especially my lip, will never move. But eventually they will get used to that, because it will be my new 'normal'. But they are just kids and the last thing they should have to be dealing with is their Mom having cancer. It makes me mad, and sad for them. They have a fear in them that kids shouldn't have to feel at such a young age.

The days leading up to my appointment yesterday were spent at Peggy's house. I literally slept, ate and watched shows. Peggy and Randy were great hosts, and my Mom was amazing at being there for me whenever I needed her. She checked on me MANY times a day! One day they needed to run somewhere for ten minutes and I would be home alone, she panicked. Other then that, someone was always at the house with me. She didn't feel comfortable with me being left alone.  I can only eat soft things still, but all I ate were healthy things the entire time. It is so easy to healthy when you've got someone cooking for you! Anyone wanna to be my chef?!?

6 days out of surgery and I finally worked up the energy to shower. I used the baby shampoo and snuck a little conditioner on the very back, nowhere near the incision. It definitely felt good to take a shower, but it takes SO much out of you after a surgery! It's crazy.

My brother Brendan did come and stay with us one night. It was so nice to see him and just hangout and talk. He was heading home from college and took a completely different route home so he could see my Mom and I for the night. He is now heading out to North Dakota for the summer to work.  Yesterday he ran and got groceries for me and then dropped them at my house so the kids and I got to see him one last time before he left!

My last night there, my Mom woke me from a nap and a minute later my brother Kent came busting through the door! I was so surprised to see him! I had another good night of hanging with my bro. He is heading to DC for a work thing for the next week, so it was good to have some time with him too!

A lot of my little scabs and bruising have left. Every shower I take, the incision looks cleaner. I scrubbed off all the sticky tape I had all over me. So now I'm lookin pretty clean! My eye is still bothering me a lot but that is because it is not closing all the way still. It is constantly blurry. sometimes stinging because its dry, and other times it is tearing up.  Once that nerve starts healing, the eye will start working better. The movement on my right side still is not there. Waiting for the nerves to heal can actually take months. 12-18 months before full recovery. Anything left after that, that is still numb or not working right, will probably never be any better then where it is. My ear is still draining blood. Every morning I wake there is new blood in it. I was happy to get to my doctors appointment and make sure it was all normal. I had been taking my temperature many times a day too, to make sure that was normal. The last time I had an infection, my temp was high.

Cleaned up after a shower,
healing is happeneing.

So Tuesday finally came! We packed up all of our gear. I did my makeup and hair for the first time in over a week and put on clothes other then shorts and a tank top!  I sat in bed and did my hair and makeup, but I was still exhausted from doing that. I could tell it was going to be a looooong day! I had a doctors appointment with Dr Corsten and then with Dr Kassam. And if all looked good, my Mom and I would be heading home after!

Felt good to put clothes and
makeup on. Hid the swelling
and stitches well!

My first appointment was with Dr Corsten.

Everything looked great. He told us again that he tested the margins around where the tumor was,  and everything looked clear.  The blood in my ear is normal, he said it is just fluids draining from the inside still. I can not hear out of that ear at all, it feels blocked and that is normal too.  The muscle that they flipped in my neck to fill in a space on my face is called the sternocleidomastoid muscle. It is the big one you see that sticks out in the front of your neck. It is attached to the collarbone and the breastbone, meets together and is attached right behind the ear. This muscle helps to turn your head. I may always have some stiffness on that side, but other muscles should help do the work as everything heals. This explains why I feel sore on my color bone and I have a bit of a sore throat on the right side, it is from the muscle being removed also.  The area on my neck between the stitches and my jaw bone is very hard! He said that is normal, and will soften some over time but it will always be on the harder side.  My incision looked good and he wanted to take those stitches out. Really?! Dr Kassam said two weeks! Dr Corsten said, the neck stitches are his! Dr Kassam can keep the head stitches in as long as he wants! Sounds good to me. The sooner the stitches are out, the less pain for me. Like I have said before, I heal quickly and the longer the stitches are in, the deeper they are because skin starts growing around them and the more digging the nurses have to do to get them out.

The neck muscle that was removed.

I also talked to Dr Corsten about him leaving. In Milwaukee he runs the Head and Neck Cancer unit. Texas offered him a job of being in charge of the ENTIRE cancer unit. Well, that sure would be hard to pass up! Plus, his wife loves the idea of warm weather! He is done at the end of this month, but will probably be around the few months after that, until the next doctor who will take his place gets here. I told him I am sad that he is leaving, but also very happy for him. I love him! He is my Dr that gives me every juicy detail of what they did to me during surgery. And almost every bit of reconstruction that I have had done on my face, were done by him. We started to say our goodbye, but then decided not to because we will probably see each other at least once more!

Once he left the room his nurses removed the stitches. I was nervous about this because my neck is still sore and its not numb like my head! I had a feeling I was going to feel a lot of what was going on. In the end, it wasn't so bad! I felt some of it, but it all ran pretty smooth! What a relief!

Neck stitches are out!

Now onto Dr Kassam. This is where things get crazy.

We had to wait a while to see him and at one point, a worker of his came in with a basket full of snacks. She said Dr Kassam is still with another patient, but he really wants to see you. Here is a snack to keep you busy! Haha.

Eventually he came in with a couple nurses, my radiologist Dr Fukui, and Dr Rovin! (Dr Rovin is my doctor who directed me to Dr Kassam, came from Marquette and also put my plate in.) Dr Fukui pulled up the MRI I had done the night of surgery. She showed us were the tumor was, and now how it looks without it. I also got a good picture of my profile and you can see the titanium plate really well. Dr Kassam said everything went really great and he was very happy with the outcome. He started to do some explaining about this surgery and prior ones to a different doctor in the room. I got some info out of it and others flew right over my head! The ramus is part of the jaw bone and that piece came completely out. He explained to him that my cancer is so rare, they don't even have a name for it. He said there are 5 people in the WORLD that have what I do. Now, if I am gonna be this 'lucky', couldn't it have been by winning the lotto or something?!?! He also said he believes that if we stay on top of this cancer like we have been, we can keep it under control.

The ramus

See the square design on my skull?
That is the titanium plate.

Now read this part carefully.
He said we got 90% of it. What?! 90%? But Dr Corsten just told us everything was clear! He explained that there is a little mass still in there and he said we don't want to do chemotherapy because last time it grew while on it, and then he started talking about radiation. I don't know if I was in my own world for a minute or if I didn't understand what was being said but the last thing I heard was that he would like to go in. I said, "Wait, you want to go in with radiation next?" I liked that idea, because I knew radiation had worked before. Then, He said, "No, I'd like to go in for surgery and remove that mass. Then we can talk radiation." OMG. Totally not expected. None of us - my Mom, Aunt Liza and I never expected to hear that so soon!  Dr Kassam said he could do the surgery as soon as the end of the week. He will clear his schedule for me. Or, we can wait a few weeks.

So, from what I understand, there was one big tumor. But a little piece of it, was separated by tissue. And that tissue was not visible on the MRI. When they went in and removed the tumor, they did just that. The whole area was clear. Little did they know, a little chunk of it, was completely separated by tissue. So that was not seen during surgery and not removed. It is too big to just radiate. The chance of it growing would be high. So what makes the most sense is to go back in and get it out. If we feel the need for radiation afterwards, then we will.

The bigger circle is where the tumor was.
That is completely gone! The small
circle, is the little spot we are going
back in for.

I honestly, was fine with this. I'm fine with having surgery. I still prefer it over chemo. We went over the pros and cons of when to have the next surgery. Cons of if we do it now, it may disrupt the nerves that are trying to heal. If we do it in a few weeks, I have to start at square one of healing process again. Pros - if we do the surgery now, I'm still in the early stages of healing and we can get it over with. Waiting a few weeks, I have time to recover from this one, not worsen the nerves and I get to go home to my kids. They were counting on me being back home. Shay and I had a countdown going.  So, I chose the latter one. We will do surgery in a few weeks.  I had said I preferred the first full week in June, because the weekend before my family has plans to go to Mackinac Island for my parents anniversary. I am missing my Best Friends wedding in Vegas this weekend (should be packed and leaving today), I don't want the Mackinac trip canceled too. But of course I said if the week before works better, obviously we can do it then. Since then though, my parents have decided that we will probably postpone Mackinac Island to later in the summer. That is fine with me as long as we do go! My 3 favorite places to visit are South Beach, Vegas and Mackinac Island. I felt so lucky that this year I was making it to all 3! And now this damn cancer ruined one of those trips. I would hate if it had to ruin another.

After all of that talking was done, Dr Kassam had his Neuro-Ophthalmology doctor come in to test my eye. Dr Kassam wanted to make sure that my eye wasn't going to get ruined over time as we wait for the nerve to start working and allowing my eye to close all the way. He looked at it and we did some reading tests. Then he put some drops in that turned my eye yellow and he could tell if there were any areas that were dry. Everything looked good though! And even though the eye doesn't want to close all the way, it is closing enough to keep it lubricated.

Creepy yellow eye.

Then, I got the rest of my stitches out! His nurse practitioner first asked if I had a doctor here at home who could take them out. Then, she took a closer look at them. I told her I usually heal fast. She agreed and said it looks great. And then decided she would take them all out right then and there. Score! All the stitches will be out which means I don't need to come back in a week! These stitches were painless. Didn't feel a thing as they came out. I was thrilled to be done with that and now we get to head home and stay there until surgery! I will probably need to make one trip down before surgery for an MRI and whatever other tests they need done.

All the stitches are out!

My Mom and I got in the car to head home after this. She wanted to let a few F bombs fly (okay, maybe one did come out! Sorry Mom, I outed you!), but said since I am okay with going back into surgery, she needs to be okay with it too. It was 6:30 our time, getting kind of late. And I am not allowed to drive yet so my Mom had to do it all. She was a good sport, we got into town about 12:30 and she dropped me at my house. She wanted me to stay with her, she didn't like the idea of me going home to an empty house by myself. But I told her I would be just fine and I couldn't wait to get in my own bed! I did wake up once or twice early that next morning and text her just so she knew all was well.

My cousin Maren brought us dinner last night and that was perfect! I had nothing that I needed to do besides enjoy my kids. We watched some of our favorite shows, I painted Shaya's nails and just caught up on things! It was a great first night back with my babies. They each got lots of hugs!  And now, I am just going to relax, heal and wait for a call on my next surgery date.

These beautiful two. The reason I keep going. 

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!