End of Feb 2020 scans - Not the news we wanted to hear

My mom and I went down for my scans, we made a pitstop in Green Bay to break up the drive. I had an MRI with a CT to follow. The scans were both fast and I was out of there in no time. 

Afterwards, we had plans to meet my Aunts for dinner. When I got out of my scan, they were both there waiting with my mom! They surprised her and showed up early. Which was nice to know she had some company! We had a great dinner with them and then it was time to head to bed.

The next morning we were back at the hospital for my results. We did not have to wait too long before the team of doctors came in. About 7 of them. My neuro-oncologist Dr. Bobustic was in there, but other than him I only recognized one person, who I had done cyber knife radiation with many years ago. So it already felt weird being in there. I wanted my normal team that I usually see! 

Well, the first thing they had to say was that both areas have grown. They were more worried about the head growth then the lungs. (Days later when I read my scan results, I found out that yes, there was growth in my lungs, but also some shrank. Now why couldn’t they at least have told me that?) 

Next, they asked if I would like to be done taking my chemo, go home and feel good while I can. I just looked at them speechless. 

After that, they asked if I wanted to see someone from palliative care. When the day comes that I need oxygen, she could easily get me set up with that or anything else that I’ll need. She is like a step below hospice.  I basically still sat there staring at them. What am I supposed to say?!?

The proton radiation that they wanted to get me on - they no longer think is an option. The hospitals that have it, probably would deny seeing me after they have read my medical history. 

Then my Mom asked if surgery was an option. (I had told her I’d like a surgery to remove what they can. Remove anything that’s not in a complicated area. It’d give me a head start to getting rid of this.)  They told us it’s getting too complicated, I’ve been through so many surgeries already. 

That was the end of our meeting. My Mom and I just looked at eachother like, what in the hell was that?! It felt like they just gave up. But they don’t know me, I don’t have a history with them. And maybe they did feel like they ran out of options for me. I need Dr Kassam back on my team!! I know he would have came up with some sort of plan. 

I had a half hr until I would meet with Dr. Bobustic by himself.  My mom and I went to the little cafe, then sat to talk. I already knew I would not be done taking chemo. I am going to keep on it. Two weeks a month I will take it, every other day. My side effects were less extreme doing it that way. 

So now we are in Dr Bobustic’s office. He first had the palliative care come in. I was dreading this and really didn’t feel like hearing what she had to say. But once she was in, it was basically a counseling session and some things were brought up that I haven’t talked with my mom about. Like if I have a will, etc.  It was definitely emotional, but I think it went well. There was no talk about equipment I might need or anything like that. So in the end, that part did not go as bad as I thought it would.

After that, Dr. Bob came back in. He was all for me continuing the chemo. He then told us he is leaving in the beginning of April. (That neuro unit is losing all of their great people.) He said if there is anything I need, contact him by the last week of March and he will help me out. My Mom asked him if a second opinion at Mayo’s was a good idea and he said yes, that’s a great idea. New eyes to look at it, new research is always coming out too.. When we got up to leave, I gave him a big hug, thanked him for all his help, and I'm hoping to see him again someday. As we walked out the door, he said he would talk to Dr Kassam for me. ❤️ He knows I’m missing him, and hearing that helped. I think the two of them are good friends. 

And that was it. Time to head home. My mom and I just sat in the car driving, trying to process everything we heard. And eventually, we have to tell everyone this news..we know they are all waiting to hear it. 

My mind is racing 24/7. It never shuts off. My worst fears to hear, I heard.  I am on the verge of tears at all times. Sometimes I’ll tear up quickly from something sad in a show or in life. And sometimes I’ll hear or see something happy, and tears show up again. I love living. I don’t want it to be over. MORE THEN ANYTHING - I do not want my kids to grow up with out their mom. I think back to when my Mom would take a trip, gone for a few nights, I thought it was the end of the world! I can’t imagine not having her as I grew up (even now) and I do NOT want that for my kids. I need to be here for them. That is what keeps me fighting. They need their Mom. I will do anything that I need to, to be here for them. I'm not gonna sugar coat it, it's been hard. I just want to be at home with my kids and dog.When they are here with me, I do my best to put on a happy face for them. Rease knows more then Shay, but they do know it grew and I am looking at a different hospital.  It's hard to get up every day and go to work. It's hard to even leave my house to go and do something fun. Last night I was at a hockey game, but the whole time there - my jaw was killing me and my vision wasn't great in my right eye. I try to escape and have some fun, but there is always something reminding me of my situation. And don't get me wrong, I am not just sitting in my house crying! haha. I am enjoying life, I just have moments here and there through out the day. 

This jaw is really taking a toll though. Opening my mouth hurts, eating hurts and trying to fall sleep hurts!! I've lost a lot of weight over the past few months and I'm trying to eat as much as I can but the jaw makes that harder to do.  I went to my family doctor for it, because I know I need a referral to see the oral surgeon. Well my Doc told me, they prefer referrals from a dentist. Because sometimes there are things they can do first to help, before a surgeon is needed. And I understand that, but it’s just another thing to add to the list of things I need to do. I plan to call him tomorrow. Hopefully, I can be seen soon for that appt....but as we all know, it takes forever to see the dentist. (But with my medical history being different, maybe I will get in soon.)

I have made some progress processing it all though and have a few things that are keeping me hopeful - 

I reached out to Mayo. They have all of my info and are going over it with their team of Doctors. They will be getting back to me any day now. I’m super curious about what they have to say.  When I googled neurosurgeons there, I found like, 10! Maybe even more! So that’s a huge plus.  I also switched up some herbs and oils, added more supplements, watching my eating a lot more - trying to keep it very healthy. Lots of water, teas, smoothies with a lot of added nutrients too. 

I am also looking into holistic centers. I found a great one in Arizona, they work with you even if you are on conventional meds. I like the idea of doing both! I think it could be helpful. My cousin Alicia is right there, I can stay with her. At first I thought, I’ll go for a few months, get pumped with lots of good stuff. But then started thinking, I could do a week a month, or maybe two weekends a month, etc. We will see, I'm waiting to hear from Mayo before doing anything else. 

I'm glad I had my Mom there with me. And as we walked through the hospital, we pointed out every area that we have memories from. The waiting area for same day surgery, the Garden Tower which is where I stayed during chemotherapy, the damn elevators that took ten years to get us up to Kassam's office when I had that infection,  the little café with fresh, warm cookies, the routes my Mom would walk everyday. We have so many memories there. Some bad of course, but a lot of good too. I feel like it was one last walk through the hospital that kept me alive for the last 6 years. They were good to me. But now, it's time to move on to a new hospital that will keep me alive for years to come.  

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 

June and August 2019 results

Hello, I am finally getting around to updating my blog! I had wrote this first part back in May so I thought I will post that and then give a recent update below. :)

I had promised my doc I’d be very good at taking my meds and I did just that! I didn’t skip and religiously took them. It wasn’t easy! I was on a schedule of taking the meds every other week.


I’ve had a few rough weeks. I’ve been good about taking my meds, but it’s def getting to me.  The first week I was just taking them before heading to work, some days without eating much prior and my stomach was getting pretty upset about it! So then I started making sure I’d eat something little  prior to taking them and that helped a lot. The first few days on them I was feeling decent, then the face swelling, tiredness, zits, rashes and nausea feelings would start to kick in. Lots of headaches too. This is my first time on these new chemo meds so I wasn’t sure what my side effects would be. After about a week, my mouth began to hurt. Not nearly like it did during radiation, but it was def sore.   Then the chemo was over and I had a few days to recoup. Well the swelling continued to get worse. And before I knew it, it was time to start the chemo again. The next week was worse. I was nauseous from day one. And it did not get better all week. The swelling got worse and the mouth  pain was there. Headaches randomly too. I was relieved when the chemo days were over, but unfortunately I wasn’t feeling any better as the days went by except the mouth pain wasn’t as bad. And then, with the swelling and all, it was time to starting another week of meds.

It’s hard for me to find joy in life right now. The things in life that should make me happy, are, but it’s actually hard to feel it. I may smile for a minute about something but then that’s it. The joy is over. I never even have a few moments of being on that happy high. I just want to lay in bed and cuddle w my dog and kids. I wish I had zero responsibilities and could sleep the days away.

My family was just downstate for my brother Brendan’s graduation. It was so nice to all be together and watch him graduate! It was emotional for me. I was so proud of him! It made me wonder if I will be here to see my babies graduate.  What will they grow up to be?

I suffered through that chemo for two months and I was anxious to hear what my scans had to say!  

My friend Amanda and Johanna came with me this trip. Unfortunately, I didn’t like the news at all. Every spot had grew. Every. Spot. I was so frustrated by hearing this. I just wanted to hear something positive after dealing with all the negative side effects for those two months. I wanted to feel some relief. I wanted the hard work to pay off. But it didn’t. 

I felt like I was spiraling down. I didn’t feel like I was in control of anything. I was taking these meds that made me feel like shit and everything was still growing. Why? Why am I doing this to myself?! 

That was the day I decided to try something different. I had (and still have) all the trust in my doctors, but I felt it was time to try something else. I had been on the oral chemos for a year and a half and 95% of my appts I kept hearing that there had been growth. I was ready to hear something better! 

Over the years I have had so many people reach out to me (bless their hearts), saying you should try this, you should try that.  I always thought no, no, my docs know what they are doing! I’m going to stick with what they say. But I was starting to lose faith... 

I had been doing a lot of research and decided to try a concoction of things - different essential oils, some in pill form and some that I rub on me. Many different herbs - either mixed in an oil or a pill. And a few different teas in pill form too.  Along with some teas that I drank. I took parts of these in the morning and some in the evening.  I did this for the two months between scans. No chemo at all. I slept great, felt A LOT better not being on the chemo, and loved knowing I was getting the chemo toxins out of my body. 

Some of my friends and family were a bit worried that I had stopped the chemo but I had faith that these products were going to do what they needed to do. I understood completely where they were coming from but it is my body and I get to make the choices on what I do. Luckily my parents are good about trusting me in what I decided. They may not be completely for something, but they keep their opinions to themselves, and let me do it. 

I was definitely a little more worried about my scans as they got closer. My mind was racing - did I make a smart decision? What if the cancer grew like crazy this whole time...but on the other hand - what if I see positive results?!  I felt like now was the time to try. I’m not in a ‘life or death’ moment. Every tumor inside me is fairly small right now. So if I’m going to try something else, nows the time to do it! 

Hearing that there was a bit of growth so many times over the past year, my goal at this scan was to hear no growth. I did not even need to hear that it had shrunk! I just didn’t want to hear that anything grew...

My brother and his preggo wife Alyssa came with Shay and I. Lyss and I had the front, Kent and Shay in the back!  Alyssa was such a good sport doing that drive with a big ole belly!  We made a pitstop in Green Bay, Kent had worked along the way and once there, we dropped him at a Starbucks while we shopped for a bit! Then we hit up the Packers and watched them practice for a while. Also might I mention, I had hit a deer about a week prior so my lovely mother let us take her vehicle! 

Once we got to Milwaukee, I had one of my scans that evening and then met up with family (some of ours and some of Alyssa’s!) for dinner. The next morning Kent dropped me off bright and early at the hospital for the other scan. Then we all met up when it was time to see my docs. This of course is when we are the most nervous. Sitting in the room waiting for them to enter with the news. 

Eventually Doctor Bob came in, I confessed to him that I didn’t take my chemo and was on oils and herbs. He seemed disappointed, which I can understand - he has put a lot of work in trying to come up with what chemos I should be on and he had to fight insurance to get them for me. I felt bad but I also felt confident in my decision. 

He finally pulled up the scans - remember, my goal was to hear no growth. And guess what? That is exactly what I heard! NO GROWTH. I wanted to jump up and down screaming but I refrained from it, haha. I instantly felt a flood of relief. I felt like I had control and that I had made the right decision. I finally had a positive answer. 

For the next coming months, we decide I would take my chemo one week each month. I was going to go 3 months between scans which felt awesome after doing a bunch of two month scans. I was definitely going to continue my oils and herbs too. There was no going back after hearing that news! 

And that brings us to the present. I’ve been very good at taking my oils and have taken some chemo too. My next scans are the beginning of Thanksgiving week. This includes a PET scan which I haven’t had in two years.   I am very ready for them. The past few weeks I feel like I’ve been on edge. I’ve gotten so used to two month scans, and now that I’m past the two months, I wish I had my scans now for a peace of mind. But in a few weeks they will be here and I’m just praying for the same answers as last time - or even better! 

It’s been stressful though. A handful of people I know have had their cancer come back recently. Others have died. Hearing this makes my heart race. For a few days I’ve had a light pain in my chest as I breath in and of course that makes my mind race too! Is the cancer growing? Is that why I hurt?  I will say, the feeling is barely there today though, which is a relief! So who knows what it was from! But I wish the scan would get here already. I’m very anxious..

I had been confident the first two months of these three. I felt I was taking everything I should and in my mind I kept believing my cancer wasn’t growing. I kept telling myself the cancer is shrinking. I do believe your mind and thoughts play a big factor into all of this. But, now that I’m close, I just don’t know how I feel anymore! 

Hoping and praying that I hear good news in a few weeks! 👊🏼 And side note - my brother and Alyssa had their baby girl and she has been a great distraction! 

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! 

Finished radiation! September 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Radiation Progress - August 2017

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

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

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

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

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

The fancy doors to enter the radiation unit.

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

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

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

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

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

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

The table I lay on and the
radiation machine.

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

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

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

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

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

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

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

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

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

The three things that come
everywhere with me.

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

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

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

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

My gorgeous family at Kent and Alyssa's wedding.

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

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

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

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

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