August 2018 scans

Hello everyone :)

My last scans were in August. My doctor was out of town but I still went down there to get the scans. I don't like using different machines because the pictures may be different, the way they position me may be different too. I like the same machines and the same people looking at them every time.   I figured it would be at least a week before I heard answers but the nurse called me the next day and said that they all came back stable ~ which means there was no change. That is what I wanted to hear, since being told that the cancer is gone would have to be some miracle. But hey, you never know, right!? No change is better then growth!

 It’s always a great relief to get my scan results back with decent news. I feel like every time I sit in that office waiting for answers though, a bomb is about to go off.  I have already gone two FULL years without a single change and then BOOM - I had a new growth. I’m always waiting to hear the next bad news... My docs have offered to start spreading my scans out farther apart since I’ve been stable for 17 months but I am only good with going four months between scans right now. It had been every 2 months for a year, my last was 3 months between and now this one is 4 months. 

I am still on my chemo meds and the doctor feels like they are doing their job. I did take a few weeks off when school started for the kids though. Life was crazy and it was hard to keep track of taking all my meds.  (I take 2 pills in the morning,  one mid day (but only every other day, and not near the other meds), at night I take two nausea meds an hour before I take 3 chemo pills plus 2 other pills at that time! PLUS I go in for blood work every Monday. And no one knows how long I will be doing this for.)  I have been taking them consistantly again for the past month though!

The main side effects that I’ve been getting are being tired, sometimes a skin rash and I get a swollen eye and part of my face for about 5 days after taking the meds. (I take them one week, then off the next.) The swelling is annoying but I know the side effects could be much worse then they are.. I just struggle with that fact that as I’m getting back to feeling normal, I need to start taking the pills again. 

I was in and out of a funk for a few months so I decided it was time to get back on an antidepressant. I had been on them for a year and then off them for over a year. All was fine but things had slowly started to change and I knew I better get on top of it before it got too bad...they say when starting an antidepressant, sometimes things can first get worse before better - and did they ever! I was full of anxiety..guilt..dread. From the moment I opened my eyes, until I went to bed at night. I’d also wake in the middle of the night with an anxiety attack. I can’t even explain what it all was like!  I was home as much as possible. I spent a lot of time alone or with my kids.  I did a ton of reading and it said to hang on for 6 weeks, things should start looking up. And they did, I feel a lot better then I was. I can’t say I feel 100% like myself but closer then I had been in a while. We got a new puppy in August and she has been a great distraction for me! I’ve become an obsessive dog mom. Haha! 

I noticed that in 3 of the new shows I started this season, at least one person in each has cancer.  One girl with cancer had said - ‘It’s not that I don’t want to live, I just don’t want to live like this.’    That really hit home for me. THAT is how I feel.  I am very happy to be living my own life. But I wish the circumstances were different - I wish I didn’t need to take these meds. But if I don’t, will the cancer progress?  I wish I didn’t have to worry that the cancer will grow. What will happen if it does? I wish I didn’t question how long I’ll be healthy for. 6 months? 5 years? 40 years? And I really wish I didn’t worry about when I’ll hear bad news again.  It’s a fear that anyone who lives with cancer, or has had cancer, knows.  

But like I’ve said before, I’m grateful to be alive and not relying on anyone else. I know things could be much worse and I am lucky that things have worked out the way that they have for me. I look at life differently now then I did before cancer. I only do things that make me happy and I’ve learned to say no when needed. 

It has been a year since I ended radiation. I look back at memories from a year ago and I am so relieved to be done with all that!  I would say my mouth is as good as it's going to get. I still stay away from spicy food, but I can do carbonation and coffee again. It is much more sensitive then it was though. My mouth even starts to bleed when I brush my teeth. Sometimes it's my gums, the inside of my cheek or the roof of my mouth. 

In December, 5 days before Christmas, I go back for my next scans. Hopefully the answers are the same as they were at the last one and I can have a happy holiday with my family! 

March 2018 Lung biopsy

Hello! It’s been a while, time for an update.  My last post was info on the fact that I didn’t need to see the doctors for two months and they thought everything was was stable. It was a great feeling!

I did get a call a few days later from my neurosurgeon telling me to get an MRI done up here in 4 weeks since I was already getting a CT done then. I didn’t mind doing them because it’s like a treat to have the scans done here in town!  After having them I knew I’d probably be waiting a week or so before hearing any news. In the end, it was about a month before I heard anything! Between a miscommunication with where my scans were and then my doctor who reads the scans was out of town. But honestly I was okay with hearing nothing. I had good news in December and I wanted to keep that going. I didn’t want to hear something bad. I just wanted a break from everything. 

Luckily when I did get news, I was told there was no change in the scans. That was a relief! My next scans had been pushed out 3 weeks later then planned and I was starting to stress about them but thankfully hearing this news put me back at ease. 

I had talked about going to see my friend in Florida which I do most years. But my next scans ended up being scheduled the week that I planned to go, so I worked it out where I could go to my appts and then fly out from Milwaukee.

 My friend Jannelle that works with me came along on the trip. We drove down and I had my scans late Monday night. We were at the hospital for hours! My scans took forever. After that we went to our hotel and met my Aunt Liza for dinner. 

The next morning we had to be back for some blood work and then met with two docs. The first was the oncologist I had just started seeing in December for my lungs. He pulled up my scans and said that nothing had changed! Hurray!!  He said I have been the topic of conversation all morning! Between him and my neurosurgeon going back and forth about things.

He thinks we should keep things as they are. Since there is no change let’s keep watching and not put me through anything that isn’t needed until necessary.  I agreed, I liked the idea of doing nothing and coming back in a few months. 

But, then I went to see Dr Kassam. He had a crew of doctors in with him and wrote a big graph type thing on a board explaining how the head and lungs tie into each other. It showed every treatment we have used and all. He wants to come up a plan of meds we can use to fight this. To keep anything from growing.  He explained that the research they were going to do for me, isn’t something they can do for every patient because they wouldn’t have time for anything else. But being special to them, they are doing it for me! A lot of time is involved for research and fighting with insurance companies to do this.  

Dr Kassam also wanted to do a lung biopsy to see what we are dealing with. He doesn’t want to wait for it to grow, he wants to be proactive.  And as much as I didn’t want to do it, or deal with that, I knew he was right.  So the day after vacation, I was scheduled for the biopsy. 

I was bummed about this. The last thing I wanted to do was worry about another body part!!  It seems we finally have the brain tumors under control and now there is this. And I was looking forward to vacation but now the day I get back, I need to have this done, so it will be on my mind. I just kept telling myself to go and have fun, and not think about anything! And for the most part, I did just that! It would pop into my head at times but I did my best to push it out. 

Vacation was relaxing and great. We had great weather, it was great to see my friends, and we had a great time meeting new people and there were lots of laughs involved! If my kids were there with me, I’d say leave us here! :) Plus I didn't love the idea of heading back for the biopsy.

love my friends!

We flew back to Milwaukee early Monday morning. Right away we had to go to the hospital for blood work and to meet with my neuro-oncologist named  Dr Bobustuc.  (Dr Bob for short!) He has been around from the very beginning and now has a big part in deciding our plan of attack. He said he has done a lot of studying on it and he believes these pills are going to help me live a long healthy life! A few months ago I had some tissue left from a biopsy sent out to Foundation 1 for testing. We did not have any good matches but based off of the results and other research, Dr Bobustuc came up with 5 medications I will be trying.

 He explained it like this: when u look at a photo of someone, just by looking at their face, you can not figure out their personality. BUT - by looking at the whole picture - check out their hair color, the style of their hair, the clothes they are wearing, the pose they are making. Looking at these things, you can get an idea of their personality. The same for this cancer. Looking at it, there is no perfect pill. But by looking at the characteristics of it, there are many more options out there. And that is how he came up with this mixture. Some are forms of chemo and others aren’t. One is a pill used to help alcoholics stop drinking! I don’t know the reason behind each..but there is obviously a good explanation which I will find out over time! 

No one has had these 5 pills used together. I am the first....We will start with a very low dose of each and see how I react. I will take them for one week, then off the next week. We will play with the dose and eventually spread the weeks out to farther and farther between each use. 

3 of the 5 pills

I’m not sure how I feel about this. I like that they are all in a pill form, and that I can take them from home.  I will just have to go into our hospital for blood work every now and then to track my levels. A big question is how I will feel on all of these though. I know I am taking a nausea pill with one to fight an upset stomach. Some pill’s side effects talk of mouth sores again...oooh lord. There are many that come with each pill. The chances of getting some are high and others are low. We won’t have answers to this until I start them. 

Dr Bob said it will be a few weeks before I start. He is now dealing with getting approval from my insurance. They may give him a hard time since some of these pills are not made for my ‘problem’.  A few of them he already got approved for,  and one was declined so he is now making an appeal. Another we found out will cost me 400 bucks a month! We are trying to get that price down. And the others he is still working on.

That was it for appts on Monday. After that we grabbed fast food and went straight to our hotel. We had to be up at 3AM to fly out that morning so we were exhausted by this point and didn’t leave our beds the rest of the day! Haha. 

Early the next morning we were up for the lung biopsy. We had to get there a couple hrs prior to the procedure to prep for it.  No eating after midnight the night before. I was passed out long before then! 

Once in the room for the procedure, which was called a CT guided lung biopsy, I first had to get in a position on my stomach that I’d be in the entire time. So however I laid my head, it wasn’t gonna move again until done. That actually took a while for me to figure out because if I laid on my ‘good ear’ then I couldn’t hear, but if I laid on my ‘bad ear’ it would get uncomfortable real quick! Can’t go face down either... I came up with a position that was on my good side, but most of my ear wasn’t on the pillow so I could still hear! Lol. 

 Next came the first CT. This showed the Dr exactly where to go. Then a spot was marked on my back. After that I was given a calming med to help me relax and forget what was going on and a pain med to help with what was about to happen.  Next came the numbing shots on my back where the needle was going in. There were a few CT scans going on at times, I felt the needle go in, and heard some little clamping noises and I knew that was the cutting of the biopsy.  It didn’t feel good, but it also wasn’t the worst pain either. One more CT was done, then I was being transferred to a bed. 

My nurse told me I might need to cough and it is normal to see some blood. Sure enough, the second I started moving, I coughed and there was blood. Not a lot, but enough to make a gross face over. Haha. 

I had an X-ray done right away to see how my lungs looked. They want to make sure there isn’t an air leak or excessive blood. Then I can go back to my room for two more hours, get another X-ray and if that one looks good, we are free to go. 

Jannelle was a great nurse!

I was tired after this and my body, basically my chest, hurt every time I took a breath in. They told me that was normal and I’d feel better the next day. The nurse also said no driving, lifting, exercising and not to remove or get the dressing on my back wet for 48 hrs. 

2 hrs flew by and I had the last X-ray. They said it looked good and we were on our way!  But about 20 minutes into the drive, the Dr who did the biopsy called me and said they let us go so quick, he didn't get a chance to come talk to me. There is an air leak, which is small and should heal on its own, but if I get any more sore then I am,or if more blood starts coming up, that I need to find a hospital.  Well this made me worried! He told me before the procedure that this could happen but the chances were low. And of course it happened!

So here we are, 3 days out of this, and I still have a sore chest when I breath. This morning I was still coughing up blood too. Not a lot of pain, and not a lot of blood. But my nurse had told me I would be good as new the next day and that is not the case!  If I am feeling this way in a few more days, I will probably go in and get an X-ray here just for reassurance that everything is okay and starting to heal. 

the spot of the biopsy 

I should get biopsy answers sometime this next week. 

I feel like a lot has happened recently but I try to remind myself that nothing has grown. There are no changes and all of this is to prevent growth from happening.  Going through these things are to help keep me from needing to do anything more serious and to also help keep me on this earth for a very long time! 

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.

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.

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

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

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

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

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

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

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

Love my family

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


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

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

Always gotta do a gown photo!

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

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

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

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

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

Still no puckering my lips

Got the closed mouth smile down
though!

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

 

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

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

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

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