Nov 2022 results of trial med

Hello everyone, I just got back from Mayo. This appt was the important one with my scans that would tell me if this trial I have been on, was working. I also had an eye doc visit and an appt with an ENT. I was most stressed about the scans. It’s been 4 months that I have been on this trial now, and these scans were going to be the first to really tell us if it was working. I have been hoping and praying that this was my miracle drug. I’ve struggled a lot on this med - I am extremely tired, my body is so sore and aches like I’m 100yrs old, not to mention very dry. I am like a snake shedding a layer of skin. Literally! After the very itchy skin, came the dryness. I’ve lost all of my hair, lashes and brows. My eyes are dry and my vision is worse. Sometimes my nose is super dry also. After dealing with these issues for 3(actually 4, but 3 with side effects)months, all I wanted was to hear something good came of it. I first had a blood draw in the oncology department. I wore my glasses and my hair. Once there I saw so many patients that were bald or had a hat/scarf on over their bald head. I regretted not wearing just a hat because it’s much more comfortable!

After that I went right over to my scans. I had a scan of my sinuses, my neck, my chest, abdomen and pelvis. I think this was the longest I’ve been in the CT room. Usually I’m in and out in under ten minutes! But there was a lot of areas to be looked at this time around. The nurse in the room with me was this very nice guy and he helped to speed along the process. At one point I asked to text my Mom to give her a heads up that it'll be a bit longer then I thought. He joked and said, 'Oh I thought you wanted it to take a selfie with me!' Haha! So after I text my Mom, I made him take a selfie with me!

After the scans I had time to run and meet my Mom for breakfast at a cute restaurant called Benedict’s. We had just enough time to order and eat before we needed to run off to my vision test. My eyes have gotten worse, especially over the last month. I’ve had astigmatism for years but it wasn’t bad and I wore my glasses like 4 times a year. Basically if I liked how they looked with my outfit. Haha. Well now I find myself wearing them many times a week. Things are blurry now that aren’t too far away from me. He checked my eyes, did several tests, including dilating my eyes again! Luckily this time I had my Mom with me who could help me get around afterwards. Last time I was able to go back to the room and sleep, but unfortunately this time I had hours of appointments to get to still! He said my eyes looked healthy but that I did need to get a new prescription for my glasses once I got home. So I am unsure if this is a side effect to the drug or not? Maybe just getting old..

My Mom and I then walked back to the oncology floor and found some comfy chairs to rest in while we waited for my appt that had the answers to my scans. We had about 50 minutes. Not enough time to walk back to the room and relax for very long. With my eyes barely working and being on the go for a few hours now, I had no problem falling asleep while we waited!

I met with one of my oncologists who has been watching over me while on this trial. He was pulling up scans and showing us different pictures, it’s hard for us to really tell what we are looking at, some pictures seemed good and others not. I think he was trying to stall a bit but eventually he broke the news to us that areas are still growing. Ugh. Of course, why would we hear something good? It’s just so damn frustrating because everything has been a trial and error. For so many yrs! Let’s see if this works, nope, okay let’s try this. With a million side effects to go along with it. I wish this cancer just had a chemo that it responded to. I guess I’m lucky that it is slow growing. But it’s like I’m slowly awaiting my death. I’m here for my kids thank god, but for how much longer? I do feel my breathing is getting a little more difficult. Is that from this trial or is that a side effect to the cancer growing in my lungs? Up to this point, I had no breathing issues. And then I wonder, if I weren’t on any meds, would it still be growing just as slowly? Then I could at least be feeling good… but do we want to risk it to find out? So many thoughts, so many questions.

After this oncologist talked with my original oncologist, Dr Robinson, they decided since the cancer is growing slowly on this med, we will give it two more months, then have scans again. And unless some miracle happens🙄, we will end this trial and try something else. We do have one more IV chemo to try, but after that….. idk. I then got my second round of blood, got my meds for the month, and was done w appts for the day. We ordered food in both nights as I was too tired to go sit in a restaurant.

The next morning I had my ENT appointment! I was looking forward to this because I’ve had sinus issues for many yrs and it recently got even worse. As in, my nose is constantly running. I need to blow it every ten minutes. It sometimes smells in my nose. My taste and smell are not well because of it. This all started 8 yrs ago when my first surgery was done through my nose. And yrs of having radiation done to that side of my face has made it even worse. I don’t know what I was hoping for, some surgery to cure all the issues? Turns out there isn’t much he can do. He had a camera in my nose, cleaned it out(that was fun😵‍💫), and took a swab to test for bacteria. He put me on a med for a month to see if it helps at all and gave me a rinse to use daily. I also asked him about my ear which I had not brought up when I made the appointment. I told him that I can’t hear out of it, that I have a tube in it, but I’ve been told that because of radiation, it is so swelled up in my ear, it’s impossible to get to. So, he looked in my ear, and believes it is closed up! Like, skin grew to block it completely! Ayyye. So now when I’m back in a month to get my meds, I will be getting a scan of my ear so he can see what’s going on in there. I had asked if a hearing aid would help me at all, but he said right now, no. I wouldn’t mind having one to hear better when out at a restaurant, or sporting event.. when a place is loud, it’s much harder for me to hear anything. Even at work when blow dryers are going - which is often since we have gotten more stylists working!

So that is that. My Mom and I headed home. Back in a month. Then back in the beginning of January and hopefully after that I will get a little break from going there, or being on any meds until I start the new one. I’m mad, but I’m also numb to the news. I’m also pretty used to not hearing good news, so why would it be any different this time? Gotta keep chugging along on this med for two more months. Gotta keep trying for my kids. My kids, the only reason I keep going and haven’t gave up yet.

Mayo scans - Oct 2020

 Hello all! It’s been a while. I did not write up a post about my scan 3 months after radiation, but there wasn't much to update on at the time! I will bring you up to speed on that, and I just got home from my six-month scan and I heard a lot of info at that. 

We will start with the three month scan - my parents and I went down and stayed again at a hotel right across the road from the hospital to make it easy to run back and forth. I had an MRI and met w my neurosurgeon. I went into it hoping to see improvement since radiation, but unfortunately there wasn’t any change! The doctor wasn’t surprised though, he said it usually takes time to kick in. And if all looked good at my next scan in 3 months, we can start going six months between scans! Geeze, that seems long to me! Haha. It’s been years since I’ve gone that long between scans... And that actually seemed a little too far off for me, I like the peace of mind by having a scan. 

I did not have any lung scans that day because I had not gotten on the chemo. I was supposed to get set up w a chemo doc here in town, but with starting work and being around clients with the virus going on, I didn’t feel comfortable being on it. Having a lower immune system and being around the public didn’t mix well for me. It was a risk I was willing to take for the time being. I am not going to bring up much about the virus, but one thing that I see often, and does bother me - are the people who say "stay home if you are scared". First off, I can not stay home. I have kids and a house to run. I don't have the option of not working. Plus, I love my job and being in control of my own money.  I am not 'scared' of the virus, just doing my best to not get it. Most of the people that I know who have gotten it, have had a light case thankfully, but what if I ended up with the respiratory version? I don't think my lungs could fight it off.  I would hate to have fought cancer for so long and be taken out by this.  And I wish the world would be more respectful of the people that are in my situation. 

So, that brings us to now. To be honest, I struggled for weeks leading up to this appointment.  I reached out to my chemo doc and let him know that I was not on the chemo and my reasons for it. He wanted me to get a lung scan and meet with him also this time. Between the head and lungs I felt like a lot was up in the air and I didn’t know what kind of news I was about to hear. I’ve been extremely tired after a day of work -especially with lower back pain, I’ve had a light cough for weeks,  and sometimes a little shot of pain in my chest. I wasn’t sure if this was stress, or my lungs getting worse, etc. It doesn’t help that I’m either at work or home (or Twin Lakes when the weather was nice!). I am very much a homebody but I liked my time out with friends and/or traveling.  So it’s been hard to ‘escape’ my own mind. I have read ALOT of books, which is a great way to keep my mind busy!  I’d love to escape town, get an airbnb somewhere tropical, and sit in the sun w a book. Just to run away for a little bit...but I’m sure others are feeling the same way. There is so much negativity and complaining in the world right now too, which is really hard to see.. So I am doing my best to keep my mind calm in any way that I can. Some days I shut down and don’t talk to many people. I'm thankful to have my kids keeping me busy when I have them and of course my pup Nala who is by my side 24/7. Haha.

My friend Stacy came with me to this scan. It was great! We had warm weather, ate great food, relaxed, etc. Stace and I do a lot of trips together so it kinda felt like it was a fun trip and not just for scans. 

I had 7 appts total this time. (Scans, meetings with Docs, bloodwork) It was busy that’s for sure! But staying across from the hospital was great again. I’d run over for an appt, then we would go do something fun. I had a jaw scan this time too, I’ve been trying to get my jaw looked at for so many months and it’s finally happening!! At my appts 3 months ago, my neurosurgeon pulled some strings to get me in with the oral surgeon there.  I meet w the doctor in a week on a video call.  Fingers crossed he has some sort of solution for me! Although I can say, my jaw isn't as bad as it was a few months ago, but it definitely still needs something done to fix it. 

I met with my chemo doc, Dr Robinson, first. It had been 6 months since I've seen him so I was prepared to hear not the best news about my lungs. I think this is what has been stressing me out more then anything. And like I thought, the news wasn't great.  Areas have grown in my lungs and some new spots have shown up. The cough I have is most likely a side effect. If I were an older person, I’d probably be feeling more side effects then I do right now. And if I went another year without any meds, I most likely wouldn’t be in good health. 

The left is now (scan is a little bigger), the right is 6 months ago.

After seeing these scans, I surrendered to the chemo. I told him I am ready to get on it and of course he was happy to hear that. I was going to figure out a way to work less if I needed to, whatever had to be done to get on it.  But, the chemo I will be on, doesn’t attack your immune system as much as most others do, plus I’ll get a blood draw regularly to keep an eye on my levels. That gave me a peace of mind.  The goal of the chemo is to slow the growth. New meds are constantly coming out and hopefully this chemo will give me more time on earth and during that time a new med will be made that responds to my cancer.   Okay - so leaving his office we both felt good about our plan. I’m now just waiting for insurance and all that to work out so I can get on the med. 

My last appt was with my neurosurgeon, Dr Pollock. He pulled up my scans and reported that the tumors have shrunk! That was amazing to hear because I have never seen a scan or heard that anything has shrunk! And the radiation will keep shrinking it. So that was awesome to hear.

 But, there was some negative news at his appt.. the radiation has caused some brain swelling. They could go in to remove the tumors to help calm the swelling, but the reason we did radiation was so we didn’t need to do a surgery. I am starting with a steroid, a high dose then slowly lowering it, to hopefully calm the swelling down. Luckily I’ve had no headaches or seizures which can both be side effects to brain swelling. Steroids can have a lot of side effects too - such as, insomnia, jitters, no appetite, weight gain, etc. So far, its been okay though.  I get kind of foggy and jittery in the evening, but thankfully during the day has been fine. 

I am going back down in two months for another set of scans.  We will see how the lungs are doing on the chemo - if the growth has slowed.  And we will also check the brain swelling to see if it is going down from the steroids. This has all been a lot to process, any time I hear something positive, there seems to always be a negative. But I also feel like we have a handle on it all now and that feels good. We are trying to take control of each issue and hopefully over time the problems will be solved.  I am happy to be going back in two months. I like knowing they will be keeping a close eye on me and I'll be curious to see if we have made any progress yet. 

February 2020- Nov results and scans to come

Hello! :) It’s been a while. Time to get you updated on my last scan and what’s to come. 

My last scan was just before Thanksgiving. This time I had Kent, Alyssa and the babe with me! We stayed at Alyssa’s  aunt’s house and everything was great! I had been on my oils, herbs and chemo meds. After having good results at the last scan, I was excited to hear how these ones went!  Unfortunately there was growth in the brain, including a new spot trying to start. The lungs though, were great. No growth. I also had a PET scan, which it had been two years since my last. Luckily, no new areas to watch. It was hard to hear about my head scan though because I had been so hopeful, and that seems to happen often. I go in hoping and expecting one answer and I hear another. Sometimes it works the opposite though! I may go in expecting bad, and I hear good. I guess that’s what I’m hoping for this time around. I’m expecting not so great news, but maybe I’ll be surprised. 

These crack me up (Kind of)- I’m getting
Injected w something that needs
To be in a metal container and
The techs are decked out in
Protective gear. 

Took little breaks to feed and change. 

So nice having her to cuddle

Kent worked on the ride

Little hunny gettin burped

At the last scan they talked to me about starting radiation again. This one is called proton radiation and it only effects the bad cells and not the good. But it’s also 6 weeks long, not offered around here anywhere and most people still end up with a feeding tube. That tells me that it is not any less intense on your body. Detroit and Mayo are the closest.  I really wasn’t up for doing that just yet.  The last round was horrible, took MONTHS after for my mouth to heal, and I still have major issues thanks to radiation. I also have a new problem with the left side of my jaw hurting when I eat or sleep. I can’t get in a position that doesn’t hurt my jaw. I can’t open my mouth much without it hurting. And any time I bite down on something, it hurts. I think it’s due to my jaw being so uneven and the right side is titanium. So is the left just worn out from overcompensating or is there a new growth? 

So these past 3 months, I’ve been on top of all my meds - Didn’t skip any chemo, took a few oils differently then last time ( I had read that some cancer areas, you need to get your dose differently and mine was one of those kinds),  stayed on my herbal supplements, etc... I am hoping that this helped slow any from growing. If I need to look into radiation again, then fine. But I wanted one last chance to see if there was any change. 

Oh, and some other news I got a while back, Dr Kassam is no longer at my hospital. We don’t know yet where he went, and I’m sure he has a non compete to follow. I keep googling his name, but so far no results. I’m okay without him while I don’t need surgery, but if the day comes that I do - I want Dr Kassam. So we will keep looking and see....a few days after that, my Grandma died.  It was definitely a tough time! And this was right around my last scans too. 

When I was 22 months old, I had a brain tumor removed. Luckily at that time it wasn’t cancer. I had an MRI when they first came out, and the doc said surgery was like a piece of cake! (I recently found some photos that I thought I’d share.) My great Grandma brought up that surgery until the day she died at 94. She would talk about how scary it was, and what a miracle it turned out to be.  I went back for scans until I was about 12. I had an MRI but also a test where they glued wires to my head and I needed to sleep during that. I struggled napping always so I remember my dad would take me to a midnight movie, then wake me early to go get doughnuts. That helped me fall asleep! After that, since they had all been clear, I was good to go. I think, everyone should be able to get a yearly scan though. Wouldn’t so many things be caught sooner?! Maybe I would have caught mine before it got too far, maybe I wouldn’t be struggling all these years.  Just some food for thought... (is that how you even say it? Lol) 

I love this pic 

I had a nice swollen eye back then too!

My cute shaved head 😂

I’ve just been exhausted. Life is tiring. Looking beyond the cancer, I’m def blessed. I have a job I love, awesome kids, amazing family and friends. But the cancer puts a big damper on everything. I’m happy and sad at the same time. Taking down the Christmas tree, I’m thinking to myself - will I be here to put it up next year? Watching my sons last hockey game (he has one more but of course I’ll miss it due to my scans) - will I be here to watch him play next year?  I don’t tell people these thoughts, but I have one similar to these - almost every day.  I wish I could pause everything, focus on my health for a few months, (I’d do the radiation, find holistic approaches, focus on everything I put into my body, etc.) then hit play again. But I can’t. I have a house to run and kids to take care of. And of course any chance I have to be with them, I am. 

My sweet and awesome Mom and I head down in the morning.  She just retired a couple weeks ago and as she said - “I have nothing going on, that’s what’s wonderful about the retiree life.”  I’m ready for it to be over with. My anxiety has been crazy the past 3 weeks waiting for them.  I tell myself that it’s all good, but my body knows different...  I’m ready to hear if there was change, ready to hear about their thoughts on radiation. I have a trip I want to plan in May, I have girls asking about prom hair, but won’t let myself book anything until I have answers..

So here we are, just killin time for one last day, then I’ll get the scans tomorrow, and on Tuesday,  the answers I’ve been waiting for. And hopefully good news. 

My Gram and I 

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.

Finished radiation! September 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two days before my next surgery - May 29, 2017

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

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

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

One of the few times I left home

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

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

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

What a difference two
weeks can make!

Scabs are gone!

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

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

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

Hiding the crooked smile. Haha

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

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

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

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

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

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

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

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

Birthday Dinner

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

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