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!

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 

March 2018 Lung biopsy

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

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

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

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

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

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

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

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

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

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

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

love my friends!

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

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

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

3 of the 5 pills

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

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

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

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

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

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

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

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

Jannelle was a great nurse!

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

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

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

the spot of the biopsy 

I should get biopsy answers sometime this next week. 

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

Hope and Surprising News. Appointment Dec 2017

In the beginning of December I had another MRI, an appt with Doctor Kassam and another appt with Doctor Taylor to go over our chemo options. Stacy came along with me again and we got some christmas shopping in while we were there! We left a day early and drove to Green Bay so we didn't have to drive down one day and back the next. Stace and I always have a good time together no matter where we are or what we are doing so it is always nice to bring her along!

Sunday evening we shopped a bit and relaxed, Monday we shopped some more and then my MRI was scheduled for 6:30 that night. Stace hung out in the hospital while I was in the scan. Luckily Starbucks was open for a few more minutes when we got there so she could get something to drink! The scan ended up being two hours. I felt bad Stace was stuck sitting around for so long but she didn't seem to mind.

The next day I met with Dr. Kassam first. We were in the waiting room for quite a while before we got brought back and then in the room for a quite some time too but we entertained each other and that helped pass the time! I did know too, that I was squeezed in that day. I wasn't supposed to see Dr Kassam for another month and then they had decided to see me before the Holidays.  We were in a little examining room too. Not the usual room with the table and big computer. Stacy was excited to finally meet Dr Kassam! But once we were in this room, I wasn't sure if we would be seeing him and I asked the nurse. She wasn't sure if he would be coming in either.

killing time!

But sure enough eventually Dr Kassam and about 4 others came in. My radiologist, Dr Fukui was pulling up the scans on the computer and Dr K said I think you are gonna like what she has to say! She told us that they believe the spot we are watching is a side affect from radiation. They had talked with my radiation oncologist in MQT and it is in the exact area where radiation was done. The spot has not grown at all in the 8 weeks we have been watching it. (Since my first scan after radiation was over.)  And now that I think of it, my radiation oncologist had requested a copy of my scans, told me from what they have described, it is radiation that they are looking at, but he said once he got the scans and looked at them, he would call me if he thought something concerning was there. And he never called.  Dr Fukui also explained to me that the spot we are watching is much smaller then it looks to be on the scan. So both doctors were really happy about it and told me to go home and enjoy the Holidays and we will do another scan in two months!  I loved the idea of being able to wait that long before coming back! I did hear from him since the appt, and I am going to have an MRI done in a month, but that one will be done here.

See the little dark line by the arrow? It goes
across the whole blob. That is
where the area they are watching ends. I
originally thought it was that entire
white area!

Checking out the scans while
waiting to be seen!

Right away I felt a huge weight lift off my shoulders. I can't say I was instantly relieved, I needed time to process this new news. It was completely unexpected. I've said this many times but I feel like we come out of his office dumbfounded. Always hearing something that we did not expect. And this time, it was a huge positive thing that we heard! It was so great to hear that rather then another negative. Once we got out of that appt we had about 15 minutes to grab food from the little deli before heading up to the next appt! At this point, with the news I just heard, I was really hoping that that meant I did not have chemo starting any time soon.

We waited again for a while and then came in Dr Taylor. We went over my PET scan from  3 weeks before and the Foundation 1 testing they had done. The testing came back with a few things that I was compatible for, but none were great options. 5 of the 6 options were trial drugs and they were all in phase 1 of testing. That means that they have been tested on animals and next it would be tried on me. And only a handful of people even get to try them out. Usually under 30. The other was in phase 2, but he didn't go over that one with us and I'm not exactly sure why.  He must not have liked what it was all about. But in the end, he told me that since the Neuro crew is not worried right now, there is no point on treating me with a chemo right now if it is only going to make me sick. What exactly would he be treating me for if the brain tumor is actually just from radiation. Again, I was so relieved to hear that!

Then he went over the PET scan. One area on the scan concerned him. And it is actually hard to see on the PET scan so he pulled up the x-ray pictures I had done 3 weeks prior. My lungs. They have little spots on the outside of them. At this point they are too small to biopsy. In a month I will get another x-ray done (here at home), and then one more a month later before I go back down to Milwaukee for my next MRI. We will see if they have grown at all and will go over the scans then. It concerns him because they are round. Most infections or anything of that nature on the lungs, are not round. But of course without them being tested yet, he does not have a straight answer for me at this time. He did say, either way, they are harmless at this point.


SO. Here we are again. Playing the waiting game. The first few days after I got home, my lungs were on my mind a lot. I was so happy to hear the head news, but now I have this to worry about.  I wish I had NOTHING to worry about.  Even if it was just for a short while....  But at the same time, at least right now I am not worrying about my head and my lungs. I did take a huge step forward at this appt with just a baby step back.  We will cross that bridge when we get there. In this moment I am going to enjoy the fact that I do not need to get chemo, that I can continue to work and continue to get stronger. I have been doing my yoga and eating more. My mouth no longer hurts me! (Unless I eat something spicy or carbonated.) 18 weeks I had a sore mouth. Good thing I had no idea going into radiation that it would hurt for so long.  I was putting off planning my spring trips along with a lot of other things because I thought chemo was going to be happening.  So I just see it as a huge plus that I can keep on living my every day life. This appointment put some hope back into me! Even if it is just for the moment we are in.

New updates, chemo talk and radiation recovery - November 2017

Here we are, beginning of November. I just got home from a trip to Milwaukee to see some doctors. I want to update you all on that but first I want to talk about radiation recovery and how I am doing since my May surgeries.

The other day we were 6 months out of surgery, and 7 weeks out of radiation.

 My mouth, from radiation, is still horrible! It is better then it was 7 weeks ago, but it is no where near healed and I thought by this point I would be great. Or at least eating whatever I want by now. That is definitely not the case though.. I still drink only water. I have tested a few teas, hot chocolate and coffee. Most hurt. First few sips of it might be okay but then after that I am done and throwing it out. I did do a coffee yesterday and the day before and i actually got to finish it! I need to wait a long time to start drinking it though because anything too hot hurts too. Nothing with carbonation either.  Food, I try to stick to soft solids. Nothing super crunchy or sharp. Nothing spicy. Nothing acidic. Nothing to smooth(like soup) because then it travels over to the "bad" side and it starts to sting. I can talk a lot better now then I could, but if I do too much that still hurts also!  When I look in my mouth, it physically looks better, but the painful feelings are still there. It is basically a never ending nightmare.


I have recently cut down on my pain meds so that may be a reason I feel like my mouth has been hurting more then usual lately. Every now and then I do have a good day though. Two days ago I took two pain pills total all day. I used my numbing rinse many times but the fact that only two pills were taken is a good sign! I live off of the numbing rinse though! Anytime my mouth starts acting up I can swish that for a bit and then I'm good to go for a while!

Most of the swelling is gone. I have some in my cheek still but I imagine that it just needs more time like my mouth does, to heal.

I think it has been a few blog posts since I have updated you all on my facial movements and the nerves around that area.  Some areas are moving so much more then they were and I am so grateful for that! My cheek moves a lot, my nostril moves and my top lip moves quite a bit too.  My bottom lip moves some, but I think a lot of it has to do with my cheek pulling it into a smile! The lip itself is 100 percent numb to the touch. My eyebrow still has zero movement at all. Being 6 months out, I have a hard time believing that it is ever going to move.  The other areas have had some sort of improvement and I believe that they can even improve more then where they are now. But I don't have that hope for the eyebrow.  Sometimes when I get down about how my face looks, I try to remind myself that at one point, there was zero movement on that side AND my eye was stuck open! That is usually enough to help chipper myself up. We will see how my nerves react to the winter.  In the beginning I only wore tank tops so nothing was touching my face or neck, but now I can do a regular neck shirt.  We will see about scarves thought. They may be too much on my face... When I get the goosebumps, my teeth nerves freak out and they start to hurt. It only last about 30 seconds and then is gone, but think how often the goosebumps happen during the winter!!

My neck is still very tight when I turn to the left. My mouth also has a hard time opening real wide. I blame some of that on surgery, and some of it on radiation.  One of my nurses recommended that I get some help from PT for both of these problems. They will show me some stretches to do and some massaging techniques. Both to help loosen the problem areas.

Incision is looking good, some swelling
under my chin, and on my cheek still.

My energy I have noticed has improved a lot more recently. I don't take naps during the day anymore. I can function even if I only end up with 6 hours of sleep the night before.  The most I work is still only 5 hours a day. I wish I could add an hour or two onto that but my back physically wont let me. I would love to start exercising but my mouth makes that impossible still. It either starts hurting, or the nerves in my mouth go crazy and that makes my teeth feel like they hurt. It's a slow process of recovery...gotta deal with one thing at a time and right now that is for my mouth to heal up. Because then I can start eating more, then I can start exercising, then I can start working more. It is like a chain reaction!

Every two weeks I have been seeing my Marquette ENT and my ear is finally making progress! I do not need to keep cotton in my ear to catch any fluid. Every time I have seen him, my ear has been too swollen to actually see far enough inside to see what is going on. He wants to make sure the tube is in place. If not, that could be part of the reason why I can not hear out of that ear yet. But more recently we have seen progress. The last time I saw him he said he was happy with what he was seeing, not quite to the point he can see the tube, but a lot of healing has happened. And more recently, my ear will pop and I can actually hear out of it for a short while. So that is a good sign! Means it still works like it should.  Two days ago, a different Doc looked in my ear and he saw the tube! I see my ENT in about 3 weeks, but part of me wants to call him up now and be like, Guess what!!!!

So, now onto my most recent appointments in Milwaukee.  3 weeks ago my Mom and I went down for my MRI. I had it the night before I met with my Doctors. It was another long one, over two hours. On our walk in the hospital to the radiology department we came across a sign pointing into a room that said "Brain Tumor Support Group". I wanted my mom to go sit in there and listen while I was in the MRI but she said no!

Anyways, the next day we went back to the hospital to meet with the Docs.  I was 4 weeks out of radiation at that point and I believed everything was going to come back good. The docs had removed all of the tumor, I had radiation as a precaution. So chances are looking pretty good right? Well once again, we left there in a bit of shock.  The Doctors said they were happy with what they had saw on the MRI, but of course everything on that side looks different because of all the surgeries I have had.  They said there are a couple lymph nodes they want to keep an eye on. And after that they told me that they wanted me to get in touch with the head and neck oncologist. They feel I should further my treatment with them. I said, "Wait, you're saying that you think I should look into chemo?"  And their answer was, yes.   In my head at this point, I'm like, are you freakin kidding me!! I thought we were gonna come down for the scan and then hear,  "Things look good, go home and heal and we will see you back in 3 or 4 months for another scan."  Wrong.

We set up my next scan with them for the end of January and off we went.  Not even ten minutes into the car ride home I had a call from my nurse and she had asked if we left the hospital yet. They spotted something in my temporal area and they wanted me to get a CT scan so they can have a better look at it. I had told her we were already headed home and I wanted to make it back for my sons last football game. We then decided that I would get the scan done at home and have it sent down to them. The doctors also decided that the end of January was too far away for the next scan and bumped it up to the beginning of January instead. GEEZE! None of this makes me feel too confident.

A few days after being home I had heard from my nurse many times, just getting my info and checking in to see if I had set up the scan. I did eventually and about a week after being home I had a call from Dr Taylor's office, head and neck oncology. The nurse was very nice and her name was Valerie! It was a Wednesday and she offered me a 9 oclock appointment that Friday, or a 2 oclock the next Friday. Being that it is hard to drop everything and go, I picked the latter one.

My mom and I had just been there the week before, so I told her I will see about bringing a friend with me this time so she doesn't need to go! My friend Stacy had been with me from the beginning and she is an easy person to travel with so I asked her and she was happy to come along! We left around 8 Friday morning and ended up getting there with over an hour to kill so we first ran into the beauty supply so I could grab some things for work and then we went to Chipotle to get some lunch. Both places are on the same road as the hospital along with our hotel.

When we got to the hospital we went up to the 9 floor. I can't remember if I had been in this office before or not. I did see Dr Howard, an oncologist there the first time so I think I may have been up there once but I don't remember. We were brought back to a room right away, but then waited almost an hour before seeing the doctor. I had read reviews on him and a lot of people first mentioned how amazing and great he is, and  then said that they waited a long time in the office. So at least we were prepared for it! Once he came in though, he spent a lot of time with us. He had my files, which were inches thick! (I suppose that isn't surprising!) The nurses and anyone who popped in also mentioned that they recognized my name due to everything I have had done at that hospital. First thing he had me do was start at the very beginning and tell him everything. He wrote it down in his own notes and asked questions along the way. He also pulled up scans from previous surgeries as I was talking about it.

He explained that there are two small cancer areas in my temporal region. One is near my ear canal and the other is up a little higher. I am unsure if these were left from surgery, or if they are new growths since my last MRI.

After that was all said and done, he explained that they are going to take tumor samples they have from my previous surgery and run 4 tests on it in the hospital and send some more out for extensive testing. The tumor is being tested with different kinds of chemos and we will find out if the tumor responds to any of them. He explained that this will take a few weeks to get answers. And I told him I was good with that because I'd really like my mouth to be feeling better and get a little weight on before starting chemotherapy.  Plus, it gives me time to prep and prepare myself for another round of chemo! He said that he doesn't see a problem with me being able to get the chemo done here at our hospital. I really like the idea of that - Milwaukee can still call the shots, but it gets carried out here. Less travel, especially now that winter is upon us, will be good.

That brings us to the present. I am not sure how I feel about it all. Chemo wasn't the worst thing in the world for me last time. I didn't enjoy anything about it, but radiation ended up being much worse for me. With chemo, I would feel bad for a handful of days after getting it, but then I'd feel good again for a little while until the next round. With radiation, there was no good days. It just got worse and worse every single day.  The thought of doing chemo again doesn't scare me, do I like the idea of possibly losing my hair again?! No. I finally have hair that I can throw in a ponytail or do whatever with. Am I ready to lose it again, absolutely not. But, every chemo is different. There are hundreds of chemos out there. Some are IV's,  some are pills. Some you lose hair on, some you don't. Some you can take at home, others in the hospital. Some you take daily, some are once a week.  So it will all depend on what concoction I end up with. There is this new thing out there called a 'cold cap'. You wear these cold hats on your head while you are getting treatment and it is supposed to help keep your hair. The hat has to stay under a certain temperature the entire time though, so you have multiple hats on dry ice in a cooler, and you keep switching out the hats. What I have read from reviews is, that most people's hair gets thinner but they didn't lose it. I think it might be worth a try! Cold has some sort of affect on chemo because last time that I got it, I was supposed to suck on ice chips as I got treatment and that would help my mouth from forming sores.

So now we are back to the waiting game. Like I said, I am in no rush to get started with this. And in 1.5 weeks a couple friends and I are heading to Vegas. It was supposed to be a trip to celebrate being done with everything but now it has turned into a trip to have one last 'hurrah' before going back in for more treatment.

It is what it is...I guess I am a bit numb to this new news still. I don't really have a lot of feelings for what is going on right now. I thought I was going to be done, and I am not. I thought it was finally time to heal, and now it isn't. It is disappointing. And tiring...... 3.5 years I have been in this battle. I am lucky I had a break during the middle of it and I hope that I soon can have a break from it again. Could chemo be the last step in this round of fighting?

We will see what the future brings.