Mayo scans and Radiation April 2020

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

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

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

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

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

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

I had multiple masks 

throughout the day. Some

with metal in it, and

some without! (Depending

on the scan.)

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

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

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

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

The back had one

on each side.

Side view

Close up of the

frame screwed in!

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

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

Shortly after getting done

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

The ride home. Kept my 

head on an incline

for days!

This was day 2 and I

expected to look 

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

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

Mayo update! April 4th 2020

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

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

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

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

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

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

I laid in the back majority of ride!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

February 2020- Nov results and scans to come

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

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

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

Took little breaks to feed and change. 

So nice having her to cuddle

Kent worked on the ride

Little hunny gettin burped

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

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

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

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

I love this pic 

I had a nice swollen eye back then too!

My cute shaved head 😂

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

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

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

My Gram and I 

June and August 2019 results

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

April 2019 - Frustrating news.

  

Hi all. It’s been a while!  I didn’t update after my December scans. Not sure why, I guess just because it was a busy time with the holidays and I didn’t have a lot to report. The head scan was stable but there was a drop of growth on my lungs. I was to stay on my meds but we changed up the days that I was on them. I had been doing a week on, week off. I was hoping that I could spread it out a bit more because the week I was off of the meds, I was recovering from being on them and once I started feeling good, I needed to start them up again. But, he wanted me to start taking them every week, just every other day. I told him I would give it a try.  I lasted for a while with that plan but as time went on, I would skip a blood draw. Or I’d skip the med that makes my face swell. I figured some were better then none and I was trying to find that happy medium of feeling good while taking the meds. It’s one thing to be on chemo meds and feel like shit but I’m also a mom trying to take care of kids and pay my bills at the same time. 

So that brings us to now. I just got back from my scans, it had been about 4 months. Going into the scans now I have no expectations. I feel like I’m always thrown for a loop so I try not to expect or hope for anything.  I was getting nervous though because 4 months is the most I’ve gone in two years. And 2 years ago is when I had a new growth after having good scans for two years. So I was wondering if that’s my time? Something new every two years?   A few people I know had their cancer reappear recently too, so that didn’t help my anxiety either. I hadn’t been feeling any different, but two years ago when I had a new growth, I didn’t feel different either. 

My friend Amanda, her son Kai and Shaya came along with this time. They had a few appts in Green Bay and then we moved on to my appts in Milwaukee. I had one scan Monday night and the other Tuesday morning.  After the second scan we went to meet Dr Bobustic. He first went over my meds with me and asked how often I was taking them. He understands that I need to find what works for me. He wants the quality of life to be good while on the meds. I explained how I would skip a few and what not.

waiting for answers

After that he went over the scans with me. He said there was a millimeter of growth on my lungs. And then pulled up the head scans. There is an area that at one point they thought was a new growth but over time decided it was a side effect from radiation. Well that area has now grown so the docs are rethinking what it is. And there is also a new spot of growth just above my ear. 

 All three areas are small and there is nothing they want to do about it now. Maybe radiation in the future (lord help me). But in the mean time, he wants me to be good about taking my meds and is adding a new one to the concoction. This new one was talked about in December and it took this long to finally get it approved by insurance. I should get my first shipment this week.  He explained that the meds work best when all are taken together. Some feed off the others and make them more powerful. So we are going to do meds on Monday and Wednesday of one week and Monday, Wednesday and Friday of the next week. The shorter week gives me 4 days of no meds and that will hopefully keep me from feeling too bad.   He offered going another four months until scans which made me think he wasn’t too worried about it growing fast but I wanted sooner then that so we are going to do two months. 

I promised him I’d be good about taking the meds! A pinky promise was even thrown in there!  I can do it for two months. Then we will see if there was any progress made. And if so, I’ll keep it up. 

ridiculous list of my meds

It’s frustrating. I’m TIRED of this battle. May will be 5 years since this journey started.. I’m SO grateful to still be here for my kids, I just wish things were different. But here we go, I’ll give it my all these next two months and hope for the best. 

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!