March 2021 Scans - Surprising news!!

 

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

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

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

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

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

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

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

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

Mayo 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! 

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! 

March 2018 Lung biopsy

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

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

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

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

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

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

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

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

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

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

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

love my friends!

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

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

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

3 of the 5 pills

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

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

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

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

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

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

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

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

Jannelle was a great nurse!

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

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

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

the spot of the biopsy 

I should get biopsy answers sometime this next week. 

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