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.

Finished radiation! September 2017

Going into radiation I had no idea it would be so hard and so painful for me. I knew there were chances that I may have some mouth pain and be very tired or have some redness on my face. But it is beyond what we expected it to be. I have had a very hard time eating. First it started with the mouth sores - the whole right side of my mouth: my cheek, my tongue and throat hurt. I don't have little sores, like a cold sore, it is a big white area of tissue that is 'burnt' by radiation. So to talk hurts, to eat hurts, to swallow hurts.  Eventually, my taste buds were affected and I can barely taste anything. And then, the last two weeks of radiation I had nausea and some vomiting to go along with it. By this point, I was barely eating anything. It hurt to eat, nothing tasted good because of the taste buds, and on top of that I was nauseous, so I was never hungry or liked the idea of even eating.  There were many days that I ate four bites of food and that was it.

As the weeks went on, I got more and more tired. Many times I took two naps a day and I was asleep very early. I had issues sleeping at night though, every two or so hours I would be awake and it took a little while to fall back to sleep. 

My face started getting pinker and pinker on the right side.  Like a sun burn. It also swelled up along with under my chin. My cheek is very warm to the touch, and I feel like every bone on the right side is throbbing. Luckily, the burn did not become raw or have any open sores besides a little spot in the back of my ear. 

This picture shows the redness, the
swelling and hairloss in back.

This was one of my last days and
as you can tell the swelling
was horrible.

After some trial and error, I figured out two things that helped my mouth feel better.  One was something they call 'magic mouthwash', which is a cocktail of medications that include lidocaine, I would swish it in my mouth and then spit it out. It would numb up my mouth for ten minutes or so. I did this before I would eat any meals -  and sometimes many times throughout eating just to get some food down!  At any point throughout the day when my mouth would really start to hurt me, maybe if I had talk to too much, I would use it then too. The other thing that helped me more than anything, was painkillers. For the past six weeks I have lived 24/7 off of painkillers. The painkillers have caused some digestive issues and it also affects my sleep. I can't wait to get off of those! Hopefully that will come soon!

The drive was not so bad! The more I did it, the quicker it seemed to be. Some days I'd go alone and come straight back. A lot of days I had friends and family come with. And a few times I stayed at my brother and his new wife's house. It all went really well and I was so lucky to have great weather, it only rained a few days.  I keep saying I need to make many trips back down to Marquette because there was so many good foods I had seen that I wanted but couldn't have!  It.  Was. Torture.  I swear, when my mouth is better, every lunch and dinner is gonna be a huge meal from a different place! I have so many recipes saved of food that look delicious too. I told my kids I am going to be making all kinds of things this winter! Haha, I have been deprived for SO long!! Food kind of puts a spell over me right now! -  Ohhh that looks so good! What are you eating today?!? Look at these desserts! Yum that smells so good! Ugh, I wish I was eating that!! 

It has been hard.  I am not gonna sugar coat it. I'd rather go through chemo again (minus the hair loss) then to do this radiation again. With chemo I would have one week of feeling horrible but then I would get a good week before having another bad week. With radiation, I had NO good week. Each week was horrible, and if anything, the next week was even worse then the week before. Talking was so hard along with eating. I had meltdowns, moments where I was mad at the world, times were I would just cry. I wanted to be knocked out and woke up sometime in October when it was over. Obviously that couldn't happen and all I could do was get through each day. I tried to not think about anything and just get through it. I would look at the end date and watch it get closer and closer.  And finally, that day came. 

My radiation techs were all amazing. I had 4 girls that worked with me everyday. They always asked how I was, what I had going on that day, who came with me, how my kids were.. I had two nurses that worked with me every Tuesday. I had my vitals taken and they made sure my health was good enough for radiation! And Dr. Baer was great. I really liked him and he was great at working with me and offered me any resolution he could possibly come up with to make things easier for me. 

I am 1 day out of radiation. I have so much relief that the drive to Marquette every day is over. I feel horrible still and I know I won't start to feel better for at least another week. I won't even feel like radiation is over for a few days, right now I feel like it's the weekend. I also had four days off over Labor day weekend so I feel like it will be day five before I actually feel like I am done with radiation.  It will be nice to work now and not have already drove to Marquette and back earlier in the day! I should have more energy for work, and possibly not need a nap before I go in. 

I am now six days out of radiation, and it's so nice to not be doing the drive! I feel like it finally kicked in that radiation is over and I can get back to normal life. It's so nice just going to work every day and not having been to Marquette already! I still have a very sore mouth. I honestly can't say anything in my mouth has improved at all yet. I do think my pink cheek and the swelling has gone down a little bit though!  I am still very tired, but I purposely put myself on my work schedule for the afternoon. That way, I can get the kids on the bus in the morning and then go back to sleep for a few hours. I am not sleeping any better yet either so going back to bed in the morning is a must!  I work anywhere between 2 and 5 hours a day. I try to aim for 3 days a week but I've actually been there 5 days the past two weeks! It is hard to say no to getting my client's in and I love being back with my girls and making money! I also have many things I want to do and places to go! And I need money for that! :)  I am really looking forward to the end of this week. I feel that by then, I should see some minor improvements on my mouth. Whether it's just that my taste buds are back, or maybe some of the soreness is gone. They said my second week out, is when I should start seeing a difference. 

Here we are on day 9 out of radiation. I am on my way to my cousins wedding in Chicago with my parents!  I am very happy to report that I have had some small improvements in my mouth! I can actually finish my morning bowl of malt-o-meal; before I gave up part way through because my mouth hurt too bad. I have to use my numbing meds before and during eating and now I usually don't have to do one or the other anymore. The pain is less then it was and I am thrilled!! Of course I wish I was 100% for being in Chicago this weekend, but I am happy to be where I am now and not where I was at the beginning of the week. I'll take it :)  I am still tired, but I know it will be some time before I feel energized. As long as I get my sleep, all is good with that.  And then my swelling is still there, but slowly keeps going down.  My pink skin is almost completely gone already!

I am now 15 days out and I expected to be feeling better then I do. I still have the mouth pain. Yes, it is better then it was a week ago, but I feel like not a lot has changed this past week with it. It still hurts every time I eat and it is just frustrating. I have read it usually takes 4 to 6 weeks to heal. I guess I was hopeful that it would happen sooner!  I am eating more then I was two weeks ago but I am still losing weight. I thought that adding more food in would help that but I am also more active now being at work many days a week... my taste buds are coming back! I can taste more salty things now. The sweet taste buds still aren't there. Hopefully in a few weeks things will all come together and get a bit easier. I still have fluid draining from my ear. I had an appointment today with my ENT and there is still so much swelling going on that it is impossible to see inside. I will go back again in another 2.5 weeks and hope the swelling has gone down so they can see what is going on. 

In less than two weeks we will be heading to Milwaukee for my next MRI. I believe that it is going to come back great. My doctors removed every bit of tumor there was and then I had the radiation as a precaution. So after this up and coming MRI, I should be back to having check-ups every now and then and that'll be it! My crazy 5 months will come to an end and I can move on with my life again! Best. Feeling. Ever. 

Radiation Progress - August 2017

Radiation has started! I have done three weeks of it now. I wasn't looking forward to doing that drive everyday, but my Mom made a comment early on that stuck with me. She said that I need to think of this as my job. When I look at it that way, it isn't so bad. This is 5 hours out of my day. I need to go down, get the radiation and then I can come home, or stay and get food, do some errands...whatever it is that I feel like doing that day. I've gotten to know every corner and every little town along the way. If anything, the drive seem to be getting shorter and shorter as I get more familiar with it. 

This week I have had partners but prior to now I was going alone. It was peaceful, I'd listen to music and cruise. I usually get a coffee, sometimes before, but usually when I get down there and then head straight to radiation. I'm fine with doing the drive alone, I am more worried about having someone to watch the kids then I am about having a partner in the car. I take Shay with me usually once a week and she was fine with it, we turn it into a girls day with lunch and a little shopping.  She doesn't like the drive so she wouldn't want to do it everyday! Rease is now old enough to stay at home alone but Shay is not. So friends and family have been great at helping out with her!

Once I am done with radiation for the day,  I usually will grab food, maybe run into a store and head home. I have not spent a full day down there yet. I am getting tired by this point and I just want to get back to the kids. Rease now has football so I need to get back to get him there and I am also working a tiny bit and need to be back for that.  Plus I know I'll be making the same trip down the next day! So I have plenty of opportunities to check places out. If I can't get somewhere one day, I can always go the next. 

When I pull up to the hospital I park in this lot that has designated parking spots for us in radiation. Then all I need to do is cross the street, go inside, take a left and walk through the radiation oncology doors. It's very convenient that they have easy access to this unit. It would definitely be more of a pain to walk into the hospital and go to a different floor. 

I have a little pass that sits in my
car for proof of getting radiation.

The fancy doors to enter the radiation unit.

Once in there, I walk down the hall and take a left into the waiting room. In the waiting room is about 8 chairs, some coffee and a bathroom with 2 changing rooms.  

I change into a gown right away. I can leave my bottoms on but my top half comes off because it would get in the way of the mask.  Then I go sit in one of the chairs and wait my turn! Sometimes they call me back right on time, and the longest I've waited is only 15 minutes. 

While waiting I have gotten to know quite a few of the other patients. I have yet to find one close in age to me though.. one is a sweet lady from Mohawk who is fighting uterine cancer. She stays in the hospitality rooms at the hospital with her husband. She only has two days left! Another is a man who also has a brain tumor. He has a glioblastoma.. the kind my Aunt had. He lives in Harvey and his wife or one of his daughters bring him. He only has 5 days left! There are a few other people I have gotten to know a little bit but these two families I see most days. It all depends on if our times match up! 

I had preferred a 10:30 appt so I can be back home at a decent time and still take the kids to Twin Lakes or something. But after doing that time, I am exhausted and need to come home and take a nap before going anywhere.  For 10:30 I need to be up at 7 something, to leave about 10 minutes after 8. (Construction has held me up a few times! Don't want to risk it.) So I had asked if we could do around 11:30 next week. That way I don't need to wake until 8 something and that should help a bit! My sleep has been very off. I am tired, and fall asleep easily at night even after taking a nap, but I wake up many times during the night. I'd love a solid 5 or 6 hrs stretch...

When it is my turn for radiation, I get called back by one of the nurses. We chat about our day as we walk to the radiation room (I see the same 4 girls every day), one of them grabs a warm blanket for me, another is setting up the table for me. I have a chair with a mirror and I set my purse on it and then I make sure I have my headband off and no earrings or a necklace on. 

Next I go lay on the table. There is a little clear plastic holder for my head. I have a pad and pillow that go under my legs, I make sure that I do not have my legs crossed, and then the warm blanket goes on me. We pull the gown off my shoulders and it rests across my chest. One of the girls give me this little rolled up piece of gauze (that they make every day), it goes in my mouth on the right side to help protect my teeth. 

The table I lay on and the
radiation machine.

Now it is time for the mask to go on. They slowly bring it down onto my face, making sure they have it lined up right. Once it is on, they snap it into place along the edges of the table I am laying on. If we are lined up right, the mask is snug but does not hurt. If my position is a little off, my right eyebrow, that is titanium, gets sore from being pushed on.  After this the girls make sure the table is in the right position, they call out a few numbers, and then leave the room. Right outside the door is a bunch of computers and a camera so they can watch and hear everything going on in the room I am in. I want to say the next 4 minutes, the machine is lining up to where it is going to be that day. Usually my table moves a bit too. Then I hear a little beep, and that is when radiation starts. The other day I counted how long it is:  58 seconds. That is it.  I drive 2 hrs, for a minute of radiation. Shortly after the radiation is over the girls come back in, take the mask off, take the gauze that was in my mouth and lower the table. I hop off, grab my things and we walk back to the waiting room. 

I had the girls take a picture of me once
the mask is on. 

I am done with radiation for that day and I'll see them the next!  I go back into the changing room, get the gown off, put my headband on and head out. I say goodbye to all of my new friends in the waiting room. 

When I get in my car I put on a tinted moisturizer that has spf 30 in it. I have to be super careful in the sun. I am usually starving at this point so I go find some food. 

The side affects I will deal with from radiation are a sore mouth, tiredness and my skin color on the right side of my face will change. Sometimes to a tan color but mostly people end up with a bright red sunburn look. I just purchased a makeup for my face that people use to cover tattoos up, so I know it'll cover up the bright red skin once I have it! I figured I am better off by being prepared. 

Now that I'm three weeks in I am feeling the side affects. Like I said earlier, I have been napping everyday but still fall asleep easily at bed time. I am to the point that I can not make it through the day without a nap. And I am getting tired earlier and earlier in the day. By about 2 o'clock when I am usually heading home from Marquette is when it starts to kick in. Before I could at least make it back before getting tired. 

My skin is slightly pinker on the right side then the other side is. It isn't very obvious yet but I can tell it is definitely changing. Some people end up with an actual burn look that peels. I hope my poor face doesn't have to go through that. I am starting to swell on the right side too. I usually have marks on that side of my face from my mask and I didn't have that the first two weeks. And under my chin, there is a lot of swelling going on too. 

The mouth sores - I started having problems with this way too soon. They say it shouldn't kick in until about 3 weeks into radiation, but I started having problems a week and a half into it. That is a bad sign because it can get pretty bad if that is the case.  The top of my throat on the right side feels like I have strep throat, and my tongue and right cheek are super painful too. I have a white area on the right side of my tongue and my right cheek. It is damaged tissue from radiation. It hurts to swallow, hurts to eat any food, and it even hurts to talk. Some days are worse than others. It depends on how much I am talking if I am on top of taking my meds.   The other Sunday it hurt so bad that I went into the doctors and got a rinse with lidocaine in it. It helps numb it, but really only masks the pain for maybe 20 minutes. That Monday morning I was so miserable that I decided to try a painkiller and see if it helped at all.  It actually gave me more of a relief then anything else had! It only helped for about an hour, but that is better then anything.

Every Tuesday I meet with my radiation oncologist and I told him about the pain and he said I was doing everything right.  Which includes using a special toothpaste from the pharmacy that my dentist prescribed. A rinse of salt, baking soda and water. (This rinse helps clean your mouth after eating anything and can help keep the sores away, You use it MANY times a day.)  And then I have the numbing mouth rinse too.  There really isn't anything more he can do for me. He wrote me a prescription for more painkillers and that is all that can be done. 

The three things that come
everywhere with me.

Eating is really important while going through radiation. Nutrition is what helps heal the mouth sores, keeps you strong and keeps you from getting sick and run down during this process. While getting radiation your metabolism can speed up by 15%.  So I am having a difficult time right now because my mouth hurts so bad and I can hardly eat anything. Here is a what a few days of eating looks like for me right now: one day was 5 bites of eggs and a bowl of creamy soup, another day was soup and a nutritional shake. I then figured out that about 45min after taking the painkiller is the best time for me to eat and I now have been able to ear a bit more -  the insides of a roll, cheese quesadilla cut up REALLY small, mashed potatoes, mac n cheese. Nothing can be very hot and has to have zero spice in it. It can not be acidic either, so nothing with tomatoes.  And nothing chunky or hard. I am slowly figuring out new foods though.

I was able to eat these, but only
half the pie, and a third of the
noodles! That took about 45 min
too. 

Some people end up with mouth sores so bad that they need a feeding tube. I really hope mine does not get to that point. I am trying to stay positive about this but having a sore mouth is really hard to deal with! If I knew it was only going to be a few days that I had this, that is one thing. But it can last through radiation and up the about 6 weeks AFTER... the only time I don't think about it is if I am by myself and not eating! Because every time I talk it hurts. And every time I eat it hurts. I can't even talk normal anymore because any movement of my tongue, hurts. 

Two weeks ago was a crazy week for me, I don't know how I managed to get through it! Not only did I drive to Marquette everyday for radiation, but my daughter had her birthday and birthday party, my brother got married  (that included a rehearsal dinner, doing wedding hair and wedding nails), I had two doctors appointments, my car got hit (not bad, it is still drivable..) and one of my best friends had a serious medical condition that almost took her life.  I don't know how I made it through that week. Sometimes I wonder if I am a robot just doing what I need to do?! You'd think I would have had a breakdown at some point. But I guess I had zero time for that! Lol. 

My gorgeous family at Kent and Alyssa's wedding.

This week is much more calm. I have friends and family coming with me to MQT most days, no other doc appointments, my friend is recovering at home, no longer in the hospital and I have yet to call my insurance for my car but I will get around to that soon.  I am grateful that my painful mouth did not kick in until the end of that crazy week! It would have been much more difficult to get through it.    

I am starting to go into work a little bit here and there. I had a close client of mine get married and I promised her I would still be able to do her hair for her wedding. The weekend after that was my brothers wedding and I did a lot of hair for that too.  I have a few more weekends of wedding hair.  It has been a good way for me to get used to being in the salon again. I am going to start working about two days a week for a few hours and then as the weeks go on, I will start to add more. 

I don't want to push myself since I am in radiation and if anything I am going to be getting more tired and miserable as time goes on. But there is a part of me that feels like I need to get back to work some too, plus I am running low on money so that adds to the decision to work! Lol. I am trying to find a balance between it all. I also want to enjoy these last few weeks with the kids before school starts. 

So right now, I am just chugging along, trying to make it through everything . The radiation is definitely taking more of a toll on me then I thought it would. I hadn't experienced this kind of radiation before and it is a lot harder then I expected it to be. For me, I think it is almost worse then chemo was. My nurses have told me though, that this radiation, is one of the worst ones to have. The side affects are very harsh. Yup! I can definitely say I agree with that!

But this too doesn't last forever. I keep telling myself that. I am almost half way though, and I just need to keep going. 16 of my 35 days are done. If this is what I need to do to keep the cancer from coming back, then I am going to do it.

Surgery #2 in the month of May - May 31 2017

Alright, so here I am back at Peggy's after another surgery! Things are going good, back in the healing groove. (Not that I ever really left it!) So far, this recovery seems easier then the last. I think a lot of it has to do with the fact that I was already run down and tired going into this surgery, so there isn't a big difference. The last surgery, I was feeling good before and had a lot more energy so the difference before and after were much greater.

Lets start by going back a few days. My mom and I left on Tuesday morning after I got the kids on the bus to get down to Milwaukee for a CT with fiducials at 4. My dad was driving down separate and leaving a few hours later. We were saying how nice and weird it was that I was leaving that day and having surgery the next. Usually things don't line up quite so nice and there is a day or weekend in the middle of tests and surgery. I loved that this one was boom boom boom.

Saying goodbye to my babies

On the trip down I had called my nurse coordinator Allyson and left a message for her asking if she could talk to Dr Kassam about having the corner of the plate behind my ear removed.  I should have called her the week before, I hope I was not too late, but I figured that I did give her like 4 hours before she left the office for the day. And on Tuesdays Dr Kassam is in the office too.

My mom and I were in Crivitz (about 3 hours from home) when I got a call from Stephanie at Dr Kassam's office. She asked if we were on our way down. I had told her we were and she said that Dr Kassam was wanting to switch our surgery to Thursday because he has an emergency surgery he needed to get in on Wednesday morn. She said she would change the CT to Wednesday and surgery would be Thursday morning. I did my best to stay calm. I know if he is switching the appointment there is a big reason for it. It can be a big mental thing for me when surgery is changed though because in my mind I have been prepping myself for it. But, this time, for some reason it didn't bother me that much. It was only a day later and I would be able to keep busy in the mean time. First thing we did was call my dad. He was an hour into his trip down. We all had to pull over and think of what our next step was going to be. It made sense for him turn around and go back to work. He would leave part way through the next day. We decided that we would stay in Appleton with Kent. My mom and I would go shopping and then out to dinner with Kent once he got out of work.

Or maybe it should say keep calm and
go shopping!

The idea of staying in Appleton instead of driving all the way to Milwaukee was kind of nice. When we got there, my mom and I first went to TJ Maxx and then to the mall. I only had a little energy left at the mall and before I knew it I was back in the car. I was going to take a nap and I told my mom to keep shopping. We had nowhere to be and Kent was still at work for a couple hours. Maybe a half hour into being in the car, I got a call from Stephanie again. She said Dr Kassam makes her sound crazy, but she is calling because surgery is moved back to Wednesday morning! She rescheduled my CT for 6PM that night! It was 4 at the time and we need two hours to get the Milwaukee from Appleton. I was super excited and called my mom right away. She was busy shopping and I didn't get an answer so I called my dad next. I told him to "hit the road"!  He had just pulled into home after work and said he was ready to go! I tried my mom again and she answered this time. I said lets go! We've got a CT to get to! Surgery is back on tomorrow morning! She quickly tried on a dress (looking for Kent's wedding) and literally came running out of the mall. Haha.

We made it just in time, I jumped out and went into the hospital while my mom parked. I speed walked my way to the radiology department. I ended up waiting for like a 20 minutes to check in. There was a line in front of me. And then when I was brought back to the waiting room, I waited another 30 minutes. So I guess the rush wasn't needed! The fiducials were put on again. They reshaved the same spots as last time and put the stickies on. I had forgotten my scarf in the car so my mom ran back to grab it for me. Then we headed to my Aunt Liza's. She had dinner waiting for us. :)  After dinner, I took my shower with the special soap and my dad showed up a few minutes later. I was exhausted from my day - I traveled, did not nap, walked around a mall and got a CT. That is a lot more then I had done on any day previous in the past few weeks! I was ready to get to bed! And I needed to get up at 4:45AM anyway to shower again before leaving for surgery.

Fiducials are on!

So now it is surgery day! Took my shower, put on fresh clothes and off we went. I was brought back to Same Day Surgery to get prepped. This is such a routine thing for me now, I know exactly what to expect next. I was asked a million questions, wiped down with the cleansing pads, put on a gown, took a pee test, got an IV put in successfully on the first try, had the neuro monitor wires put on and marks drawn all over my head. l met with the anesthesiologist, told her that whatever was done last time worked great. I had no nausea or a dry mouth after. She gave me a calming and nausea med a few minutes later. Then one of the nurses came in with the "cute" hair net for me. We had a few minutes to wait and I was getting more and more relaxed. It was getting hard to keep my eyes open! Eventually I passed out! I don't remember saying goodbye to my parents or being rolled into the operating room. It is getting earlier and earlier every time! Maybe next time, I'll be sleeping walking as I shower the morning of. Haha

Ready to head to the hospital

Got the marks on my head, neuro
wires hooked up too.

Our surgery morning pic!

Next thing you know, I'm being woke from surgery. I had a CT done and I don't remember that at all. I do remember having the breathing tube in though. And I remember when they pulled it out too. It wasn't as horrible as I thought it would be! So now I am back in my room. I remember getting asked some questions, I remember my nurse Ericka talking about liking one of my tattoos, I was in and out of sleeping. Eventually Dr Kassam came in and I made myself become alert because I wanted to remember what he had to say! He said he was so happy for me and everything went and looks great.  After he left, I asked if I could have the catheter removed. I hate having that in. My nurse came in to remove it, one of the girls I had last time! She said I had 6 hours to pee. I am not exactly sure what happens after that if you don't go.... BUT an hour later I was already ready to go! That meant I needed to get up and walk. Mission accomplished! Now, I am feeling pretty darn good! Swelling hasn't had a chance to quick in, pain meds are workin great, no new numb areas, my jaw feels the same as before surgery, and my eye is closing!  Nothin to complain about here! Everyone was commenting on how chipper and talkative I was. My nurse joked that I was a pro, hitting all kinds of milestones in a short amount of time. My PT came in and we walked two circles around the ICU. I wasn't exhausted from the walk, it actually felt good to get up and stretch a little.  She signed off for PT and OT and the next day I was seeing the speech therapist.  My nurse came in and told me that I was going in for an MRI that evening at 6:30. They said it was going to be a long one, but long is usually about 1.5 hours. I knew my aunts and brother Kent were coming to see me but figured they could go eat while I am in the test.

How my parents see me as I enter the room. I
am still out of it at this point. Awake, but
not really. 

After Dr Kassam came in and I
was more alert. Before swelling
takes over.

I was feeling around on my head, and I started to question if the corner of the plate was gone. I had never got a call back from Allyson so I wasn't sure if that was a good or bad sign. I hope my message had got to Dr Kassam. I didn't see him before surgery either so I didn't get to bring it up to him at all. My head was very tender, especially the sides because that is where the pins are placed to keep my head still. Some areas were swollen and had dried blood on them. I even found a staple in one area behind my ear! All of that made it hard for me to figure out if the corner was still there or not. I would have to ask Dr Kassam or his PA the next day when I saw them.

So now it is time to roll on down for the MRI. I had to stay hooked up to all of my machines and my nurse needed to stay close by while I am in the MRI. As the elevator doors closed I saw my aunts walk by to my room.  I was getting pretty tired at this point and said I would just sleep during it. She didn't put the full padding around my head because of the new incision, but we did wrap a towel around it before putting the mask on so that helped me feel less worried about moving.  I slept probably the first 45 minutes, and then about a half hour after that the tech came in to talk with me. She said I had about a half hour to go. Then when that was up, she said about 20 more minutes. At this point, over two hours in, I was starting to go crazy! My ass hurt from laying there, my mouth was dry. Every time that the machine stopped moving and making noises I'd be saying to myself, please be done, please be done. I'd be hoping to see the tech open the door. No such luck. The machine would start moving again. Eventually she came in to add some contrast to my IV. She said 15 more minutes. I hope to god that is true!!! And yes, finally it was over. Turns out I was gone for 3.5 hours. That was the record length of an MRI for me!! When I got to my room, my aunts, parents and bro were there. I felt horrible being gone so long! It is now 9:30 and everyone wants to be getting home. Poor Kent drove down to see me and was still heading back that night. We literally had 15 minutes together.  My kids were facetiming me too. There was a lot going on! My visitors all stayed for a short time and then they left. They had never went out to eat because they didn't want to be gone when I got back. My mom said they all had a good time talking and not to worry about it!

After the lengthy MRI, with my crew for the
few minutes that I got to see them!

It is time to try and sleep, I was exhausted and ready for bed! I slept about 45 min and then was up. An hour later I fell asleep again for about 35 minutes and then was up. And an hour or two after that I slept another 40 minutes and was up.  I. Could. Not. Sleep.  Maybe it was from the pain meds, maybe the noises, or maybe I was "alert" because I knew my nurse would be in soon to check on me. Whatever it was, sleep did not happen that night! Luckily I had an awesome nurse named Kate and we did a lot of chatting. She helped me get as comfortable as possible. We took out an IV that wasn't needed, didn't put the leg cuffs back on and she would try to not bother me for a few hours so I could work on getting some sleep.

Look how taped up this arm is. The
other arm had a big plastic brace on
it when I came out of surgery.

At some point this first night I realized that they shaved more of my hair then they needed to or did last time. My incision wasn't any farther over then the last surgery so I don't know why they did that! My guess is it was a guy who shaved it. Haha. The nice thing about the last shave is it didn't go across the whole front of my head so I could still part on the left side and it would hide everything. Now, it is shaved so far over, that even if I part on that side, the shaved part is still showing. Which means I will have to wear headbands a lot more now then I was having to! Grrrrr. I've got a bone to pick with someone!!

Look at all the extra hair shaved
that didn't need to be!

During the first night my eye started swelling a lot and really fast. Each hour was dramatically worse. Since I wasn't sleeping, I kept taking pictures to watch the progress. I swelled up the surgery earlier this month but my eye never got as horrible as it did this time.  I was curious as to why it got so bad this time. What I found out the next day though, is that they had to mess with the titanium plate to get underneath it to remove the tumor. They had to bend it and cut an area of it to get inside. I think this had to do a lot with the swelling because that whole area where the plate is, is very tender and sore. And the plate literally sits on my brow bone. So a lot was messed with very close to my eye. At this point, when I was talking to Dr Kassam's PA that was in on the surgery, I asked about the corner of the plate behind my ear. He said he got rid of it!!! He cut any corners that were still on the plate. I was surprised with how happy I was by hearing this. I know the corner of the plate was a pain, but if I had to deal with it forever, I would. Finding out that it is gone though, and that the pain behind my ear will be gone forever, I was so VERY excited! I thought that maybe the staple had to do it with it, but that was from one of the pins holding my head, he said it didn't want to stop bleeding so they stapled it shut.  He was in no rush to get out of my room and that was so nice, so any little detail that I asked, I would get answers for.

Swelling is happening.

This is 45 minutes after the last picture.

Another half hour.

And boom! Just like that it is swelled shut.

Right after surgery, I looked great. Swelling hasn't had a chance to settle in yet and I am feeling pretty good pain wise. When I woke, my eye was closing all the way! It had not done this the entire time since the last surgery. I remember being so out of it but talking to my nurse Ericka about it and telling her how excited I was that it closed! I could tell it felt good and it wasn't blurry at all. The was enough to make my day right there! The little bit of movement in my cheek and lip were still there too. My mom swears it is even better then before surgery. I have been crossing my fingers that the eye continues to keep closing. Once the swelling kicked in, it was permanently closed for a day. The next morning, it started to open a little bit. That was a good sign because some surgeries, that eye is swelled closed for days. It is really hard to see out of when it first starts opening because it is only open a little bit so my vision is off. The next day when I woke, the eye was open even more! I love seeing such progress in one day! It is the motivation I need to see that healing is happening. Last night my eye looked even better then yesterday morning and now today, it almost looks normal! I have some bruising around it still but that is not a big deal. My eye is still closing, at one point yesterday it was open a tiny bit when I closed it but that was it, and I can deal with that if it continues to be that way. I still have some blurriness going on, it doesn't blink as fast or as well as the other eye, but I will take the little improvements I have seen.  My eyelid is very dry, you need to remember how delicate the eyelid skin is, and mine gets stretched to the max. Luckily, my friend Meagan makes amazing lotions and I have been putting that on it religiously and I can tell it is helping a lot.

The incision once the dressing came off.

How I looked the entire next day.
No use out of that eye.

The morning after when my eye
started to open again.

I was in another nice big room too! When I walked with my PT, she told me there are two big rooms on that floor, the first big room I had for my last surgery, and this surgery I was put in the other big room. It is nice because my parents and visitors are there a lot and we have room for everyone. In my room were two big comfy chairs for my parents and they are put right near a window and the sun was shining in on them. The chairs are located to the right of my bed though so it makes it hard for me to turn that way and talk to them, and it's my bad ear that I can't hear out of. Sometimes my mom would grab another chair and plop it down right in front of my bed. Haha. We could have a stare down or an interrogation!

My room. The right front corner was the bathroom, the
right back corner was the window and chairs. The
back left corner was the computer and machines.

The only full day I had in the hospital, Dr Kassam came and saw me again, we chatted about the corner of the plate, he said he did get the message and I told him how happy I was that it was gone. I said I will see you on Tuesday in clinic? He said yes you will! He leaves, I believe it is that same day for 3 weeks. So we are lucky we got everything in before he goes. Our plan right now is if all goes well, we will head home after our appointment tuesday and I will look into getting my stitches removed at home so I don't need to come back down a few days later.  His PA came in that day to remove the drain tube and staple. Once he pulled the tube out I said that wasn't so bad. He then said really? A lot of people complain about it. Especially the guys! Haha, yeah well, guys act like they are on their death bed when they have a cold right?!?

I saw the speech therapist that day too. She first watched and felt as I swallowed a few different things. Then she had me move around my mouth and tongue. After that we did a lot of speech and memory tests. It was strange, I felt like I was in school again! Memorizing a list of words, reciting words she would say.  But in the end, I passed.

The second night in the hospital I did sleep a little better. In the ICU though, the nurse needs to be in every hour to check on you. So that definitely broke my sleep up, but I still got more then the night before. My blood pressure cuff went of every hour too. I get so sick of wearing that thing! It is kind of tight, and it gets warm and itchy under it. Eventually what I do is take it off after the machine takes my blood pressure, set my alarm for 57 minutes, and then put it back on! My nurse was impressed - she said she and some other nurses have tried to put it on their own arm and they can't. I have figured it out by using the bed to help. Desperate times call for desperate measures! Haha.

My last morning there went pretty quick. My mom showed up with a coffee for me, I changed into my regular clothes, got to take every wire connected to me off, that is the best feeling ever! My mom went down the the pharmacy and filled my prescription, and I got one last dose of my favorite IV pain med before we removed the IV. Next thing you know, I am saying goodbye to everyone as I am being wheeled out of the ICU and to my mom's car!

My mom and Peggy have once again been great at waiting on me. I get meals and drinks delivered to me. My mom is in my room the second I need her! Today she says it is shower day and that I need to get up and walk around for a bit. I agree, both probably should be done! It is supposed to reach 88 degrees today so I plan to go sit outside for a short bit. I will need my sunglasses on to protect my eye, and either a hat or a wrap to keep my incision out of the sun. But I know that a little fresh air and vitamin D would be great for me.

All in all, I think this surgery was a good one. The visual recovery has been great, they fixed the corner of the plate, I have no new damage to any nerves, my jaw wasn't messed with at all and they got the last bit of cancer out! I'd say I couldn't have asked for anything better! I am now on the path of healing, and hopefully it is a very long time before I need to have another surgery!

48 hours after surgery

72 hours after surgery

This morning, 4 days out of surgery.
So happy my eye is looking so
great so quickly after this
surgery!

 Today ironically is National Cancer Survivors day. I'd like to say I am a survivor, but I'd LOVE to be able to say that 10, 20, 30 years from now!