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! 

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.

Bad news and waiting for answers

Hello. I am a week out from my next appointment and I had one the day after I got back to town from Vegas. Vegas was great. I was able to forget about everything going on and I had a nice break from life.  It was fun, relaxing, warm and we had lots of laughs. I wish I was there longer!

I got to Milwaukee the day before my scans started. We had flown out of Appleton so it made no sense for me to head home when Milwaukee was even closer. The scan on Monday was a PET.  I got to sleep and relax Sunday when I got to my Mom's friend's house and after 5 that day I was on a special diet. Nothing with sugar, that includes carbs and no caffeine. They had a list of foods that I am allowed to eat. The morning of the scan I could only sip a little bit of water. I slept as late as possible because my appt wasn't until 1. Then we got ready and headed to the hospital. The scan itself isn't bad.It takes time, but a lot of the time is in the prep.  I first had my blood sugar tested and if it was under 200 then I could get the test. I passed. After that they injected the radioactive glucose that is in a metal jar through an IV. I sat for an hour while that flowed through my body. Cancer is attracted to glucose so the solution would make its way to any cancer in my body and it would then light up during the scan.  I am in a comfy recliner chair and I have a warm blanket on. After the hour, I can start drinking water and then I go into the scan. I have to lay still and the first part of my body scanned is from my chest down. I have to have my arms up over my head. This lasted about a half hour. Next is my head and neck, my head is in a little holder. This one is more comfortable because my body can be in any position, I just need to stay still. Once that was done I was free to go.

My Mom and I went out to eat with my two Aunts at a delicious restaurant that night, then stayed at my Aunt Liza's condo. The next morning we had to be out of the house at 5:50 so it was an early night to sleep!

That next morning I went back to the hospital for my MRI. I was in there for an hour this time so it wasn't too bad. Lately these MRI's have been 2 hours and that is getting too long!  Once that was done we walked across the street for some breakfast.  Then we went to Dr. Kassam's office and eventually got seen by him. When we saw him and his team, there were about 6 of them who came in. Dr Kassam told us that there is a tumor there, and looking at it on the scan, I thought it isn't small. He said it has not grown in the last 5 weeks since my prior scan.  He looked sad though, and told me that it is now in a very complicated place to operate. It is right on my facial nerve. So for now, there is no surgery happening. He said we will be doing chemo and radiation. This radiation would be cyber knife radiation. I had that one 3 years ago and I had no problems with it besides a headache the night I had it. He also said there are clinical trials and radiation beads that we can look into.

The white spot in the middle
is the tumor.

This appointment was two days before Thanksgiving and Dr Kassam kept grabbing my hand, he would tell everyone that I am very special to him. He said to have a good Thanksgiving and that he wants to see me in 3 weeks for another MRI. We will see if the tumor has grown at all.

Valerie, (the cancer doctor's nurse) was in on the appointment and she is going to make sure that I see Dr Taylor when I come down. He did want to see me sooner then that, but we still don't have the results from foundation one testing and I didn't want to go back down again in these 3 weeks that I am home. She did say that we are doing a chemo, but we just don't know what kind yet.

After that appointment I saw an ENT there. He was nice, but it isn't the same with Dr Corsten not being there. Then we went back to a room and Dr Kassam came back in to discuss the PET. He said that there is a spot on my lung, it could be a cyst though and we aren't going to biopsy it or do anything about that right now. He said besides the obvious brain tumor, he didn't see anything else. But now, any time I run out of breath, the spot on my lung pops into my mind.

I am struggling with the tumor news. I have always had the faith in Dr Kassam, every tumor so far, he has been able to remove. To hear him say that he might not be able to this time, is scary. I guess it comes down to hoping that chemo and radiation can do the job or shrink the tumor enough so that Dr Kassam can do something about it. But last time, chemo did nothing. I know that we are testing it this time, so the chances of chemo doing something will be better. And last time, the cyber knife radiation did do its job also. Fingers crossed.  I know a lot of people end up visiting a Texas hospital when they feel like they have run out of options. So of course I will be keeping that in mind too.

I constantly think about my kids. Chances are more real to me, that they might grow up without their mom. My kids have just been with their Dad for 5 nights. First, I thought this is too long. They need to be with me more because I might not be here one day. Then I think, maybe they should be spending more time with their dad because then when the day comes that I am not here, it won't be so hard for them to live with their dad.
Or my friends and I will talk about guys and dating, but in the back of my head, I think, I will probably never get married again or have more babies. I won't be on this earth long enough for that. And if I am, cancer will probably always be there and will I really find someone to marry me? Knowing cancer is there. Yes, I know, those people are out there. But-think about it-would you get into a relationship with someone who has cancer? The possibility of it ending short and in grief, is much higher then it is with a healthy person.
I think about my poor parents, and what it must be like for them. I couldn't imagine what it would be like to go through something like this with Shaya.
I think about how I need to clean out these rooms full of storage in my house so that one day, someone else doesn't need to clean up my mess after I am gone.

 I have always been super positive about all this, you guys know that. And I like to think that I still am, but these thoughts, pop into my head a lot more now then they ever have.

On the bright side of all this, my mouth is doing so much better. I am off of my painkillers, and I rarely use my numbing mouth wash. I have been able to eat a lot more food and each day is much more enjoyable now that my mouth isn't killing at all times. There is still a bit of healing to go, but it is now tolerable. There is also some face and neck swelling going on, but each week it seems to be a bit better.

I still can't hear out of my ear. But I am starting to think that I might not ever be able to hear out of it. This tumor is in my temporal area, but it is also on my auditory canal. That is part of your ear that is on the inside, near your brain. I can't help but think, that adds to another reason why I can't hear out of it.

So, that is about all for now. I have been struggling with all of this and thought writing it down, getting it all out, might help me feel better about it.

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.

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!