March 2021 Scans - Surprising news!!

 

Hi! I just got back from Mayo last week. This appointment  was just for my lungs. I had been on the small dose of chemo for 2 months, and my Doc wanted to see how things were going being on a smaller dose then what his patients are usually on. I did feel a lot better on this amount of chemo. I still had fatigue, swelling around my ‘bad’ eye,  joint pain here and there and white hair! The hair is weird, but luckily it’s an easy fix for me to do and no pain involved! I definitely felt this dose is much more “livable” then what I was on before. And I’d like to report that I did not miss a single dose! In the past, it’s been hard to take it every day while feeling like crap. 

My beautiful white roots. Haha.
 (And some other areas of white
I missed coloring previously!) 

My sweet Mother and I went down Monday. I do need to give her a shout out because the last few trips she has done all the driving! And I appreciate that so so much!  We had great weather, high 50’s and 60’s! We did a little shopping and eating, and then spent the night in our room. Being just the lungs, I had a CT Tuesday morning, then bloodwork and after that I met w my chemo doc and headed home! So it was a very quick trip!

The CT and bloodwork went smooth and fast. I think this was the first time I didn’t have an MRI or have to put a gown on in years.  After the CT we had a delicious breakfast in our hotel before walking back over to meet with Dr Robinson. 

Just as a reminder - our goal with the chemo is to slow or stop the growth in my lungs. The last appointment  I had only been on the chemo for a month due to the side effects being bad and had a bit of growth in some areas. 

We didn’t wait very long before Dr Robinson walked in. First thing he says is, “I’m going to sanitize my hands and give you a high five! Because your scans looked awesome!”  I’m thinking, what! Very happy they look awesome but what does he mean by that?! Next thing he says is, “Majority of the spots are SHRINKING!!”  I couldn’t believe it! I told him that I didn’t even know that was an option! Turns out only 4% of people on this chemo see shrinkage.  And I can’t believe I’m in that 4! And only on the small dose! He was just as surprised as I was to hear this news. May will be 7 years since all of this began and NOT ONCE have I heard chemo is shrinking anything! And I have been on so many different types of chemo, that I’ve lost count. 

The left is before - see the ‘snowman’?
All of the circles are touching.
And the right - smaller and not all touching! 

So as of now, radiation is (hopefully) still shrinking the spots in my head, and the chemo is shrinking the spots in my lungs. Usually one area may be good but I’m still worried about the other. I’ve never had a time where both areas are in control. It’s such a nice feeling!!! I have a different mindset looking at my chemo now then ever before. Usually it makes me feel miserable and nothing positive comes of it. But now, I think it’s this magic pill that’s doing what it’s supposed to do and helping me stay here on earth longer! ❤️ 

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. 

Mayo scans and Radiation April 2020

Alright! Here we are, four days out of radiation. Things are going well! Trying to take it easy these first few days after. I'm feeling kind of "fragile" right now.... I’m gonna start by updating on the past few weeks and then talk radiation! 
     After searching and reaching out to people for quite some time, I finally got to talk with Dr Kassam!! It was amazing just hearing his voice! We will not know where he is going to be for about six more weeks. He had told me that he is happy I chose to go to Mayo and he is going to reach out to a neurosurgeon there who specializes in removing my kind of tumors. Just in case we need that down the road. But we both agreed that I will continue with Mayo and if in the future I need to travel to where Dr. Kassam is, I will! ❤️ Just knowing I still have him on my side is an awesome feeling!  That same day Dr Foote, my radiation doc, called me and he said he finally got a hold of my scans, all looks good and wanted to set the radiation appt up. That was a relief in it's self, because I wasn't sure if after he saw the scans, I had room for more radiation.  He had an available spot the next week, but I needed a bit more time then that to prepare mentally so I picked the week following that one. I would also get a head MRI and a chest CT while there. Monday will be dedicated to scans and appts, and Tuesday will be radiation. 

    My parents came with me again and my brother Brendan was at my house with the kids. It has worked out perfectly with my brother at the house. I think its a "change of scenery" for everyone when he is here with them!  We had to be at Mayo for 7:30AM on Monday morning to start my appts, and radiation was on Tuesday, so we knew a hotel stay was inevitable. We left Sunday afternoon and got there about 7. We went straight to our hotel, and once in our room, we all spent some time sanitizing and then relaxed after that.My parent's packed us some food to have in our room. My Mother might have lucked out at getting her hair colored that night too!

Our Hotel was right across the street from the hospital, so Monday morning I headed over there for the MRI and CT. They are still letting one person go into the hospital with you for these appointments, but I figured there was no point when I was going to be in the scans anyway. So I crossed the street and was at the exact entrance needed to be at, easy! Except it was closed due to the virus! I keep walking, find a new door, closed again! Omg. Finally I find a bigger entrance and get my hopes up! Only to be locked out again! But, this one had a speaker for mother’s in labor to hit. So I hit it! Haha. And explained to the guy that I didn’t know where I was and where to go to get inside. He gave me directions, I wasn’t very confident in them, but I made it! I first had my MRI and then the CT. Both scans went very well, they were shorter than what I have been getting so that was a treat! 

   When time came to actually meet with a doctor, my Mom met me in the hospital. We first met with the Neuro who helps with putting the frame on that I’ll wear.  Dr. Pollock was great! He explained in detail what we will be doing in radiation -  He told us that we will start w radiation and look into surgery after if needed as last resort. Why open me up now if this can get the job done. The best piece of info we got from him (actually from anyone over the two days, I think) was this - He said to us, he can’t make any promises but with the kind of tumor I have, the radiation we are doing usually reacts super well to it. 70 something percent of the people w this cancer, the tumors DISSOLVE over time!  It takes up to 18 months for the shrinking to happen. Wow! It was so great hearing something hopeful!! I have been hanging on to that bit of information since hearing it!        He then explained that I will get many tiny doses of radiation, but they all lead to the tumors. So the good brain tissue isn’t damaged as much as it would be. But the tumors still get a big dose of radiation. When I show up the next day I will get into a gown and hooked up to an IV and a calming med. The titanium frame is first put on, he said they will inject lidocaine and then put the screws in and after that I’ll have another MRI and a CT. Then they will map out the radiation using the scan photos and the frame on me head. Areas that have been radiated previously, do not get it again. Luckily there are paths to take that have not been through radiation before. Once the mapping is done, we go into the radiation room, I lay on the table and the frame is locked in. They then start the radiation and mine will be about 90 minutes long. They can range anywhere from a half hour, to about 3 hours.  I think back to my Marquette radiation - I went 5 days a week, for 7 weeks. Each dose was about a minute, so overall I had about 35 minutes of radiation. And in ONE sitting here, I get 90. I know they are different forms of radiation, but I still think that’s crazy! And so much easier!!

    Once we finished going over everything with him, we moved on to the other appointments. First I had a blood draw.  Next up was meeting the new Oncologist. He specializes in sarcomas so he is exactly what I need! I had not googled him at all prior to the appt, actually I didn’t know his name before that day, so I had no idea what to expect. Well, in walks this young good looking Doc! 😂  Dr. Robinson. Everything went great with him!  He wasn’t in a rush and explained things really well. He first had me go over my entire cancer history. Then he asked about my side effects on the chemo meds I had been on previously. He said he is going to use one of the chemos I’ve already been on, but differently then how I’ve taken it before. It’ll be a lot stronger dose, but only one med and not a ton through out the day. Of course a higher dose doesn’t sound very appealing, but, I love the idea of not keeping track of numerous pills each day. I will not be starting chemo quite yet, he wanted to wait a few weeks out from radiation.  He also explained that he would like me to get in touch with our cancer doc here at home. That way, I can run in for labs, an IV, prescription refills, anything needed. But my Mayo doc will still be the one calling all the shots!  The whole appt went super well, I felt like we had a good connection and that definitely put me at ease. 

    After that appt, I met w a nurse to cover some questions and paper work for the MRI the next morn. When finished, we had about 45 min until the next appt and I was tired and hungry at this point! It’s probably about 4 now, and I stepped in this building at 7:15am! The day had flown by. So we walked over to our room and quickly ate some food! With the virus right now, you need a mask on 24/7 in the hospital. So going back to the room was another bonus because we could rip that mask off for a while! I give credit to every health care person who wears them. They are hot and constricting! Some scans I had to wear it for and some I did not. But the room has to be aired out for a certain amount of time after you’ve been in it, if no mask, and I hated to do that to them so it was on most of the time!

I had multiple masks 

throughout the day. Some

with metal in it, and

some without! (Depending

on the scan.)

    My Dad came back with me for the next appointment with Dr Foote. My Dad had not been in Mayo yet, because each time only one person could come with. So this was a perfect time to swap parents!  Dr Foote is the only doctor that I have seen before so it was nice seeing him again. He went over more of radiation with us, including side effects. I may have a headache from brain swelling, a lot of people have swelling in their face and eyes, and their eyes turn black and blue. I may be fatigued, have no appetite or be nauseous. The screw incisions will be sore and possibly tingly. Any of this seems like a walk in the park after the painful mouth from the Marquette radiation! He then explained the times that everything will be happening the next morning - I needed to be there for 5:30am. And we should be done about noon. That sounded great to me because then I could be home at a decent time! St. Mary’s is the hospital building and no one is allowed to come in with me there. I was okay with that though. I knew I’d be in and out of scans the whole time and wouldn’t be around anyone as it was. Or in the moments I could be with someone, I'd probably be groggy anyway. This wasn't my first rodeo so I wasn't worried about being on my own! Haha

   Appts were finally done! I was mentally and physically exhausted after that day!  That evening I relaxed and tried to fall asleep at a decent time since my morning was starting bright and early! No eating after midnight and only a sip of water by morning. I forced my parents to go for a walk or to do something because I felt bad that they were cooped up all day either in the hotel or hospital. There are some neat trails to walk that aren’t too far away and they went to one of those. 

   The next morn my Dad dropped me at the hospital. I was in my room changing into a gown in no time. They got the IV  of fluids going, gave me the calming med ,and before you know it - it’s time to put the frame on. Dr. Pollock and a few others were in the room. After feeling my forehead - where the titanium plate meets my skull bone - he decided to change up the frame. He didn't want to be putting a screw in the titanium if not needed. This frame they like to call cyclops. The cyclops only has one screw incision in front (hence the name), and two in the back. And by using that frame, the titanium will not be messed with at all.  First they put the frame over my head and balanced it by resting some plastic posts in my ears. Once the frame is lined up correctly, the first lidocaine shot goes in, then the next two. I could feel it going in, and then a stinging feeling as the numbing meds spread out, along with hearing some crunching noises! The screws go in next. I heard noises but didn’t feel any pain. There was definitely a pressure feeling but over some time that went away too.  Most people must ask for a picture because they had a Polaroid on hand to snap some pics! The first photo below is of a stranger with the frame on, with all of the pieces added on. They fit the base onto me, and then add different pieces to the top depending on the scan I am in. The second is my little polaroid pic with the cyclops on!

  Now it's scan time! The MRI and CT were both very short! Then back to my little room while the mapping happens.  I’m kind of groggy by this point, took a couple selfies with the frame on, and tried reading my book. Reading wasn’t easy because not only was I a bit loopy, but the frame covered one eye so I needed to have my head tilted in a way just to see the book! 2 things got brought up often throughout being in the hospital - my nails, because they looked so freshly done. Lol. (I have done my own at home for years!) I had to give a few people tips on how to work with what they had going on right now.  And the other thing brought up is the book I’m reading, Where The Crawdads Sing. Many people commented on that including Dr Pollock who just finished it! It is super good by the way!

The back had one

on each side.

Side view

Close up of the

frame screwed in!

    Before I knew it, it was my time to go in. The radiation machine looks similar to other scans. I laid on a table/bed and the frame was locked into the top of the bed.  There wasn’t a headrest because the frame held my head in place. The bed was adjusted so my neck felt comfortable. I’d be laying there for the next 1.5 hours. I knew by this point that I’d sleep the entire time, and that’s exactly what I did! The scan was nice and quiet, and I didn’t feel a thing. The only bonus to wearing a mask, was when I was passed out, I didn’t have to worry if my mouth was open or anything! Hahaa. 

  I woke as they entered the scan room, then I was wheeled back in my bed to my little room. I was under observation for a while, they came and took the frame off and wrapped me up. It didn't hurt removing it at all. If anything, some pressure was lifted.  I also got a dose of steroids in the IV. I could now start eating and drinking too. Eventually they let me change into my clothes, and a bit later I was free to go. They wheeled me down to the entrance and then I hopped in my parents car when they rolled up. And home we went!  It was noon Mayo time.

Shortly after getting done

   I was super tired at this point, but never fell asleep. The whole ride home!  It just felt so good knowing something was ‘injected’ into these tumors. I think I was on some sort of a high. Even that night, it took a while to fall asleep and I was up at a decent time the next morn! Between the ‘radiation high’ and getting the IV fluids and steroids, I was feeling full of energy! The whole car ride, I was waiting for a headache to start. I remember the one I had after Cyber knife radiation and was expecting it to come again. But it never did! Here we are, 4 days out and I never had a headache. My forehead has a bump of fluids, and it slowly made its way to the inner part of my left eye. But never to the point where I couldn’t see out of it. And no black and blue eyes either! The incisions are sore but as long as I don't touch my head, it's fine! I was very fatigued the first few days, I laid around a lot, but never to the point where I needed a nap. I noticed my brain was working slower then normal. I’ve been working on this blog for days y'all! It’s been harder to get the words out. But each day is getting easier. After a surgery, the first 48 are the worst. Swelling peaks and what not. They call this Gamma Knife ‘Surgery’. So I was thinking, maybe after the first 48, things will start improving. I was close but about a day off, today I woke with no new swelling, and the swelling that is there, has gone down! My forehead still has a slight bump from the fluids but that's also starting to go down too. It’s been nice! Very happily surprised with this recovery. I’ve even asked myself if I really had the radiation?!   

The ride home. Kept my 

head on an incline

for days!

This was day 2 and I

expected to look 

much worse! This
should be the "bad" eye!

     Having this done while during quarantine has been great. I don’t feel pressured to get back to work, I’m not missing out on anything fun. It’s been easy to take time and heal. 3 months from now, I’ll be going back for scans. We will see if the radiation has started doing it’s job, and if I've responded to the chemo at all.  I’m relieved to be where I am with all of this, I think every appt went great. I’m glad Mayo had an option for me to try. I’m glad I’ve met some great doctors. I’m glad I also have Dr Kassam in my back pocket! Just knowing that something is in these tumors, trying to shrink them, gives me the peace of mind I've needed for a quite some time! And now, its time to continue the healing and hope & pray for the best!

Mayo update! April 4th 2020

Hello! Thought I’d give you all an update on Mayo. I was stressing about going. I didn’t want to leave my house w this virus going around. As much as I wanted to hear what Mayo has to say, I figured it’d be more safe for me to stay home and push the appt off. The virus would be a lot more serious for me to get, then the cancer right now..I don’t think I’d stand a chance against the virus.  But at the same time - what is the world going to be like in a month? Will the virus be everywhere? What if the cancer keeps growing and it’s beyond help? I tried twice to meet with my doctors over the phone. But both times, the receptionist said they want to see me. It’s definitely frustrating worrying about this virus on top of having cancer.  Just keep adding things to the list of worries! 

I eventually gave in to going, but I was not staying at a hotel. My kids stayed home with my brother Brendan. My parents and I left at 4am and went straight there and back. We did stop for a bathroom break but took every precaution possible. I slept most of the way there, so that made the drive fly by! 

Unfortunately at Mayo, we didn’t get much info while there. The beginning of the day started with the chemo doc. The first thing he said is, “I’m not sure why I am seeing you. I am still waiting for some scans and the radiation doc is too. There isn’t much I can do. I’ve never seen anyone on the chemo meds you are on and I haven’t worked with them. With some shrinking in your lungs, I feel you should stay on them. I won’t be charging you for this appt since I can’t help you.”  Instantly I thought, why the heck are we even here?! Obviously asking about a phone appt, didn’t get back to the docs!

So after that, frustrated, we first called Aurora about the scans. They said they had sent them 2 weeks ago but will do it again right then. After that I checked in with radiology. My appt wasn’t for 5 more hrs, so I hoped they could see me sooner! She took my info to give to the nurse and asked us to wait in the open area outside of their waiting room. We sat around for a good half hr, then I checked in again. She said they have my info and someone will eventually come talk to me. So we waited some more. Finally someone called my name, and said the doc will see you now. We were so happy it worked out to get in earlier! 

Dr Foote was a nice man and had some good info for us. He unfortunately was still trying to get the scan, so he couldn’t tell me which radiation we would be using. He needs to see each area that has been radiated and what kind, and how much, radiation it was. After he has all that figured out, he can know for certain what we will use. But it sounds like cyber knife, or gamma knife. One of the two I have had before. It’s usually a couple hrs at most. The worst part of it was a headache that night. Much more doable then 6 weeks of radiation and a sore mouth for months! So that was an instant relief. But that was it! He could do no more until he sees the scans. He said I would hear from him later this week, after he has seen them. 

So off we went! Time to head home. I was disappointed that I didn’t find out more but also relieved I could go home! And at an earlier time then expected. 

I laid in the back majority of ride!

The first few days home I heard nothing. On Friday I had an email from Doc Foote, he said the scans were getting mailed to him and he should have them on Monday. Once he goes over them, he will reach out to me.

A bit later I see I have a voicemail from my nurse at Aurora who worked close w Dr Kassam! I had reached out to her about two weeks ago, because I heard she could get me in touch w him. Well she said she did eventually get a hold of him and would like to talk to me about it and said she would call back again later.

After her, the chemo doc called me. He said we figured out what kind of cancer you have. What?! Now - in 6 yrs, I have never had a ‘proper’ name for my cancer. It’s always been called a sarcomatoid carcinoma. Which is basically two different kinds of cancer. He told me it is a Hemangiopericytoma. A form of sarcoma. I asked him if there is a chemo it responds well to? He said when we first got your info, no doc wanted to see you because they didn’t know the kind, but now that they do, my info is going to a chemo doc they have that specializes in sarcomas. Dr Bobustic did say, make sure the doc works with sarcomas. So that part is now on track. And as I read info on this cancer, it does seem spot on! 

Then Kassam’s nurse calls again. She said Dr Kassam would like to get in touch w me on Monday! I will get an email from either him or her, about how and when we will chat. That was awesome to hear! 

So, I felt like I learned a lot more yesterday then I did at Mayo. I’m glad things are finally lining up. Still playing the waiting game, but I am hopeful and heard some pretty exciting things! 

The kids and I have been doing well during quarantine. I had wrote a couple blogs ago that I wish I could hit pause on life while I focus on cancer, then hit play once I’ve had some time. And that’s how I’m looking at this time off. I can get plenty of sleep, focus on my oils and supplements, I have time to cook up healthy meals, smoothies, juicing, etc. I’m looking at it as time to work on myself. I was getting run down and this time at home has been a blessing in disguise! 

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.