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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

June and August 2019 results

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

August 2018 scans

Hello everyone :)

My last scans were in August. My doctor was out of town but I still went down there to get the scans. I don't like using different machines because the pictures may be different, the way they position me may be different too. I like the same machines and the same people looking at them every time.   I figured it would be at least a week before I heard answers but the nurse called me the next day and said that they all came back stable ~ which means there was no change. That is what I wanted to hear, since being told that the cancer is gone would have to be some miracle. But hey, you never know, right!? No change is better then growth!

 It’s always a great relief to get my scan results back with decent news. I feel like every time I sit in that office waiting for answers though, a bomb is about to go off.  I have already gone two FULL years without a single change and then BOOM - I had a new growth. I’m always waiting to hear the next bad news... My docs have offered to start spreading my scans out farther apart since I’ve been stable for 17 months but I am only good with going four months between scans right now. It had been every 2 months for a year, my last was 3 months between and now this one is 4 months. 

I am still on my chemo meds and the doctor feels like they are doing their job. I did take a few weeks off when school started for the kids though. Life was crazy and it was hard to keep track of taking all my meds.  (I take 2 pills in the morning,  one mid day (but only every other day, and not near the other meds), at night I take two nausea meds an hour before I take 3 chemo pills plus 2 other pills at that time! PLUS I go in for blood work every Monday. And no one knows how long I will be doing this for.)  I have been taking them consistantly again for the past month though!

The main side effects that I’ve been getting are being tired, sometimes a skin rash and I get a swollen eye and part of my face for about 5 days after taking the meds. (I take them one week, then off the next.) The swelling is annoying but I know the side effects could be much worse then they are.. I just struggle with that fact that as I’m getting back to feeling normal, I need to start taking the pills again. 

I was in and out of a funk for a few months so I decided it was time to get back on an antidepressant. I had been on them for a year and then off them for over a year. All was fine but things had slowly started to change and I knew I better get on top of it before it got too bad...they say when starting an antidepressant, sometimes things can first get worse before better - and did they ever! I was full of anxiety..guilt..dread. From the moment I opened my eyes, until I went to bed at night. I’d also wake in the middle of the night with an anxiety attack. I can’t even explain what it all was like!  I was home as much as possible. I spent a lot of time alone or with my kids.  I did a ton of reading and it said to hang on for 6 weeks, things should start looking up. And they did, I feel a lot better then I was. I can’t say I feel 100% like myself but closer then I had been in a while. We got a new puppy in August and she has been a great distraction for me! I’ve become an obsessive dog mom. Haha! 

I noticed that in 3 of the new shows I started this season, at least one person in each has cancer.  One girl with cancer had said - ‘It’s not that I don’t want to live, I just don’t want to live like this.’    That really hit home for me. THAT is how I feel.  I am very happy to be living my own life. But I wish the circumstances were different - I wish I didn’t need to take these meds. But if I don’t, will the cancer progress?  I wish I didn’t have to worry that the cancer will grow. What will happen if it does? I wish I didn’t question how long I’ll be healthy for. 6 months? 5 years? 40 years? And I really wish I didn’t worry about when I’ll hear bad news again.  It’s a fear that anyone who lives with cancer, or has had cancer, knows.  

But like I’ve said before, I’m grateful to be alive and not relying on anyone else. I know things could be much worse and I am lucky that things have worked out the way that they have for me. I look at life differently now then I did before cancer. I only do things that make me happy and I’ve learned to say no when needed. 

It has been a year since I ended radiation. I look back at memories from a year ago and I am so relieved to be done with all that!  I would say my mouth is as good as it's going to get. I still stay away from spicy food, but I can do carbonation and coffee again. It is much more sensitive then it was though. My mouth even starts to bleed when I brush my teeth. Sometimes it's my gums, the inside of my cheek or the roof of my mouth. 

In December, 5 days before Christmas, I go back for my next scans. Hopefully the answers are the same as they were at the last one and I can have a happy holiday with my family! 

Hope and Surprising News. Appointment Dec 2017

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

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

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

killing time!

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

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

Checking out the scans while
waiting to be seen!

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

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

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


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

Bad news and waiting for answers

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

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

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

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

The white spot in the middle
is the tumor.

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

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

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

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

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

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

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

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

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