Hope and Surprising News. Appointment Dec 2017

In the beginning of December I had another MRI, an appt with Doctor Kassam and another appt with Doctor Taylor to go over our chemo options. Stacy came along with me again and we got some christmas shopping in while we were there! We left a day early and drove to Green Bay so we didn't have to drive down one day and back the next. Stace and I always have a good time together no matter where we are or what we are doing so it is always nice to bring her along!

Sunday evening we shopped a bit and relaxed, Monday we shopped some more and then my MRI was scheduled for 6:30 that night. Stace hung out in the hospital while I was in the scan. Luckily Starbucks was open for a few more minutes when we got there so she could get something to drink! The scan ended up being two hours. I felt bad Stace was stuck sitting around for so long but she didn't seem to mind.

The next day I met with Dr. Kassam first. We were in the waiting room for quite a while before we got brought back and then in the room for a quite some time too but we entertained each other and that helped pass the time! I did know too, that I was squeezed in that day. I wasn't supposed to see Dr Kassam for another month and then they had decided to see me before the Holidays.  We were in a little examining room too. Not the usual room with the table and big computer. Stacy was excited to finally meet Dr Kassam! But once we were in this room, I wasn't sure if we would be seeing him and I asked the nurse. She wasn't sure if he would be coming in either.

killing time!

But sure enough eventually Dr Kassam and about 4 others came in. My radiologist, Dr Fukui was pulling up the scans on the computer and Dr K said I think you are gonna like what she has to say! She told us that they believe the spot we are watching is a side affect from radiation. They had talked with my radiation oncologist in MQT and it is in the exact area where radiation was done. The spot has not grown at all in the 8 weeks we have been watching it. (Since my first scan after radiation was over.)  And now that I think of it, my radiation oncologist had requested a copy of my scans, told me from what they have described, it is radiation that they are looking at, but he said once he got the scans and looked at them, he would call me if he thought something concerning was there. And he never called.  Dr Fukui also explained to me that the spot we are watching is much smaller then it looks to be on the scan. So both doctors were really happy about it and told me to go home and enjoy the Holidays and we will do another scan in two months!  I loved the idea of being able to wait that long before coming back! I did hear from him since the appt, and I am going to have an MRI done in a month, but that one will be done here.

See the little dark line by the arrow? It goes
across the whole blob. That is
where the area they are watching ends. I
originally thought it was that entire
white area!

Checking out the scans while
waiting to be seen!

Right away I felt a huge weight lift off my shoulders. I can't say I was instantly relieved, I needed time to process this new news. It was completely unexpected. I've said this many times but I feel like we come out of his office dumbfounded. Always hearing something that we did not expect. And this time, it was a huge positive thing that we heard! It was so great to hear that rather then another negative. Once we got out of that appt we had about 15 minutes to grab food from the little deli before heading up to the next appt! At this point, with the news I just heard, I was really hoping that that meant I did not have chemo starting any time soon.

We waited again for a while and then came in Dr Taylor. We went over my PET scan from  3 weeks before and the Foundation 1 testing they had done. The testing came back with a few things that I was compatible for, but none were great options. 5 of the 6 options were trial drugs and they were all in phase 1 of testing. That means that they have been tested on animals and next it would be tried on me. And only a handful of people even get to try them out. Usually under 30. The other was in phase 2, but he didn't go over that one with us and I'm not exactly sure why.  He must not have liked what it was all about. But in the end, he told me that since the Neuro crew is not worried right now, there is no point on treating me with a chemo right now if it is only going to make me sick. What exactly would he be treating me for if the brain tumor is actually just from radiation. Again, I was so relieved to hear that!

Then he went over the PET scan. One area on the scan concerned him. And it is actually hard to see on the PET scan so he pulled up the x-ray pictures I had done 3 weeks prior. My lungs. They have little spots on the outside of them. At this point they are too small to biopsy. In a month I will get another x-ray done (here at home), and then one more a month later before I go back down to Milwaukee for my next MRI. We will see if they have grown at all and will go over the scans then. It concerns him because they are round. Most infections or anything of that nature on the lungs, are not round. But of course without them being tested yet, he does not have a straight answer for me at this time. He did say, either way, they are harmless at this point.


SO. Here we are again. Playing the waiting game. The first few days after I got home, my lungs were on my mind a lot. I was so happy to hear the head news, but now I have this to worry about.  I wish I had NOTHING to worry about.  Even if it was just for a short while....  But at the same time, at least right now I am not worrying about my head and my lungs. I did take a huge step forward at this appt with just a baby step back.  We will cross that bridge when we get there. In this moment I am going to enjoy the fact that I do not need to get chemo, that I can continue to work and continue to get stronger. I have been doing my yoga and eating more. My mouth no longer hurts me! (Unless I eat something spicy or carbonated.) 18 weeks I had a sore mouth. Good thing I had no idea going into radiation that it would hurt for so long.  I was putting off planning my spring trips along with a lot of other things because I thought chemo was going to be happening.  So I just see it as a huge plus that I can keep on living my every day life. This appointment put some hope back into me! Even if it is just for the moment we are in.

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.

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!

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

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

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

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

These are the two scars that I grew up with.

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

Then, the cancer happened!

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

Before and after the port came out

Hatd to see but there is a dot above my finger

Looks pretty light here, much pinker in real life!

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

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

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

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

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

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

One of the drain tube scars

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

 

The fat graft since healed

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

  

  

"Feed your faith and your fears will starve"  

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

 

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

 

Port and mole scar

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

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

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

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

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

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

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

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

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

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

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

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

The left over meds.

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

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

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