Nov 2022 results of trial med

Hello everyone, I just got back from Mayo. This appt was the important one with my scans that would tell me if this trial I have been on, was working. I also had an eye doc visit and an appt with an ENT. I was most stressed about the scans. It’s been 4 months that I have been on this trial now, and these scans were going to be the first to really tell us if it was working. I have been hoping and praying that this was my miracle drug. I’ve struggled a lot on this med - I am extremely tired, my body is so sore and aches like I’m 100yrs old, not to mention very dry. I am like a snake shedding a layer of skin. Literally! After the very itchy skin, came the dryness. I’ve lost all of my hair, lashes and brows. My eyes are dry and my vision is worse. Sometimes my nose is super dry also. After dealing with these issues for 3(actually 4, but 3 with side effects)months, all I wanted was to hear something good came of it. I first had a blood draw in the oncology department. I wore my glasses and my hair. Once there I saw so many patients that were bald or had a hat/scarf on over their bald head. I regretted not wearing just a hat because it’s much more comfortable!

After that I went right over to my scans. I had a scan of my sinuses, my neck, my chest, abdomen and pelvis. I think this was the longest I’ve been in the CT room. Usually I’m in and out in under ten minutes! But there was a lot of areas to be looked at this time around. The nurse in the room with me was this very nice guy and he helped to speed along the process. At one point I asked to text my Mom to give her a heads up that it'll be a bit longer then I thought. He joked and said, 'Oh I thought you wanted it to take a selfie with me!' Haha! So after I text my Mom, I made him take a selfie with me!

After the scans I had time to run and meet my Mom for breakfast at a cute restaurant called Benedict’s. We had just enough time to order and eat before we needed to run off to my vision test. My eyes have gotten worse, especially over the last month. I’ve had astigmatism for years but it wasn’t bad and I wore my glasses like 4 times a year. Basically if I liked how they looked with my outfit. Haha. Well now I find myself wearing them many times a week. Things are blurry now that aren’t too far away from me. He checked my eyes, did several tests, including dilating my eyes again! Luckily this time I had my Mom with me who could help me get around afterwards. Last time I was able to go back to the room and sleep, but unfortunately this time I had hours of appointments to get to still! He said my eyes looked healthy but that I did need to get a new prescription for my glasses once I got home. So I am unsure if this is a side effect to the drug or not? Maybe just getting old..

My Mom and I then walked back to the oncology floor and found some comfy chairs to rest in while we waited for my appt that had the answers to my scans. We had about 50 minutes. Not enough time to walk back to the room and relax for very long. With my eyes barely working and being on the go for a few hours now, I had no problem falling asleep while we waited!

I met with one of my oncologists who has been watching over me while on this trial. He was pulling up scans and showing us different pictures, it’s hard for us to really tell what we are looking at, some pictures seemed good and others not. I think he was trying to stall a bit but eventually he broke the news to us that areas are still growing. Ugh. Of course, why would we hear something good? It’s just so damn frustrating because everything has been a trial and error. For so many yrs! Let’s see if this works, nope, okay let’s try this. With a million side effects to go along with it. I wish this cancer just had a chemo that it responded to. I guess I’m lucky that it is slow growing. But it’s like I’m slowly awaiting my death. I’m here for my kids thank god, but for how much longer? I do feel my breathing is getting a little more difficult. Is that from this trial or is that a side effect to the cancer growing in my lungs? Up to this point, I had no breathing issues. And then I wonder, if I weren’t on any meds, would it still be growing just as slowly? Then I could at least be feeling good… but do we want to risk it to find out? So many thoughts, so many questions.

After this oncologist talked with my original oncologist, Dr Robinson, they decided since the cancer is growing slowly on this med, we will give it two more months, then have scans again. And unless some miracle happens🙄, we will end this trial and try something else. We do have one more IV chemo to try, but after that….. idk. I then got my second round of blood, got my meds for the month, and was done w appts for the day. We ordered food in both nights as I was too tired to go sit in a restaurant.

The next morning I had my ENT appointment! I was looking forward to this because I’ve had sinus issues for many yrs and it recently got even worse. As in, my nose is constantly running. I need to blow it every ten minutes. It sometimes smells in my nose. My taste and smell are not well because of it. This all started 8 yrs ago when my first surgery was done through my nose. And yrs of having radiation done to that side of my face has made it even worse. I don’t know what I was hoping for, some surgery to cure all the issues? Turns out there isn’t much he can do. He had a camera in my nose, cleaned it out(that was fun😵‍💫), and took a swab to test for bacteria. He put me on a med for a month to see if it helps at all and gave me a rinse to use daily. I also asked him about my ear which I had not brought up when I made the appointment. I told him that I can’t hear out of it, that I have a tube in it, but I’ve been told that because of radiation, it is so swelled up in my ear, it’s impossible to get to. So, he looked in my ear, and believes it is closed up! Like, skin grew to block it completely! Ayyye. So now when I’m back in a month to get my meds, I will be getting a scan of my ear so he can see what’s going on in there. I had asked if a hearing aid would help me at all, but he said right now, no. I wouldn’t mind having one to hear better when out at a restaurant, or sporting event.. when a place is loud, it’s much harder for me to hear anything. Even at work when blow dryers are going - which is often since we have gotten more stylists working!

So that is that. My Mom and I headed home. Back in a month. Then back in the beginning of January and hopefully after that I will get a little break from going there, or being on any meds until I start the new one. I’m mad, but I’m also numb to the news. I’m also pretty used to not hearing good news, so why would it be any different this time? Gotta keep chugging along on this med for two more months. Gotta keep trying for my kids. My kids, the only reason I keep going and haven’t gave up yet.

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 January 2021

 Hello all! My Mom and I recently got back from Mayo. We lucked out and had great weather. You never know what it’s going to be like in January! We went down on Monday since my first appt was early Tuesday morning. Minnesota restaurants are only doing take-out right now too, so we grabbed food from one of my fav restaurants and hung out in our room that night. 

The next morning we got ready for a day of appts. I had 4 that day! The first was my chest CT. That is always quick and easy! In and out in a matter of minutes. 

 

Next we met with the oral surgeon about my jaw. This appt I had been trying to get for MANY months!!  I did have a video call with the doctor a couple months ago and that went super well! He is just a little older then me, very friendly and funny. I had a CT done of my jaw when I was at Mayo in October. He told me that there are a lot of issues with my jaw, like arthritis and bone on bone areas. Some due to radiation and some because my jaw is so uneven due to prior surgeries. The Doc said he had a few options for me, starting with a steroid shot. The other options, like a prosthetic joint, involved surgery so we will start with the easiest. So at this appt with him, I got the shot! I was a bit nervous for the shot because the hurting jaw is on my ‘good’ side, which meant I would feel this little procedure. I did feel it going in but that part wasn’t too bad. It was more uncomfortable as he injected the liquid. But, it didn’t take very long and before I knew it, it was over. I should be able to notice if it’s going to help with the pain in the next few weeks. Fingers crossed! 

After that, we grabbed some breakfast from the hospital cafeteria to kill some time before meeting with Dr Robinson to go over the lung scan and talk chemo.  Once we are with him, he told us the lungs are stable. Some spots have grown a tiny bit, but he was happy with what he saw. Especially with only being on the chemo for one month. (I was told to stop the chemo after I sent in a picture of a rash I had on my legs.) I told him I hoped to do a week on, week off with the chemo. The side effects just kept piling up when I was on them daily and I wanted to try and avoid that this time around. But, he doesn’t like doing that. It’s like pushing the gas, then hitting the breaks, pushing the gas, then breaks. He prefers a slow but steady pace. So we are going to try a smaller dose, half of what I was on, daily.  I am really hoping that I have less side effects on the smaller dose, but we won’t know that until I’m on it for some time. I have been on them for a little over a week now and so far I just have joint pain. I'm really hoping it doesn't get any worse then this but we will see.

Finally we made it to my last appt of the day, the brain MRI. I was tired by this point and ready for a nap! I ended up waiting about an hr to go in, but once in, it was over before I knew it. And barely got my nap in! Haha 

That evening we did a little shopping and ate some more great food in our room! The whole trip down we were planning out our meals! Haha, that's as exciting as things get these days. 

The next morning was our final appt with Dr Pollock to go over the MRI. For 6 weeks I was on a steroid to calm some swelling I had in my brain from the radiation. It was a struggle being on the steroid! I wasn’t sleeping, I constantly had the jitters, I was bloated, full of zits. Lots of side effects! Especially being on the chemo and steroids. So I really hoped the scan news made it worth it! I was also curious to hear if the radiation was still shrinking the tumors. First he told us, the scans looked good! The tumors were still shrinking. That was so great to hear! And then he said the swelling was significantly better too! Thank you Lord! I was relieved to hear this news. The steroids did their job. 

The left is now, going to the right is Oct

 and the last is the scan right before radiation.

Dr Pollock said he was fine seeing me in 3-6 months. He would plan our appts whenever Dr Robinson wanted me back for scans. I have a video appt with Doctor Robinson in a month and since getting home from Mayo, my next appts were set up with him for in two months. I am guessing Dr Pollock will wait to see me the time after that but I will of course double check with him. 

Overall it was a good set of appts. We know this chemo isn’t going to shrink the spots on my lungs, the goal is to stop them from growing. So the only thing I could have heard that was any better is no growth in my lungs. And we were pretty close to hearing that so we will take this as a win. 

It was a hard 3 months for me. I felt like my options were crappy - be on the chemo and feel horrible but possibly live longer because of it, or don’t take the chemo and feel good but possibly live shorter. I’m hoping that this round is easier since I won’t be on the steroids and my chemo dose is smaller. Wish me luck! 

Mayo scans - Oct 2020

 Hello all! It’s been a while. I did not write up a post about my scan 3 months after radiation, but there wasn't much to update on at the time! I will bring you up to speed on that, and I just got home from my six-month scan and I heard a lot of info at that. 

We will start with the three month scan - my parents and I went down and stayed again at a hotel right across the road from the hospital to make it easy to run back and forth. I had an MRI and met w my neurosurgeon. I went into it hoping to see improvement since radiation, but unfortunately there wasn’t any change! The doctor wasn’t surprised though, he said it usually takes time to kick in. And if all looked good at my next scan in 3 months, we can start going six months between scans! Geeze, that seems long to me! Haha. It’s been years since I’ve gone that long between scans... And that actually seemed a little too far off for me, I like the peace of mind by having a scan. 

I did not have any lung scans that day because I had not gotten on the chemo. I was supposed to get set up w a chemo doc here in town, but with starting work and being around clients with the virus going on, I didn’t feel comfortable being on it. Having a lower immune system and being around the public didn’t mix well for me. It was a risk I was willing to take for the time being. I am not going to bring up much about the virus, but one thing that I see often, and does bother me - are the people who say "stay home if you are scared". First off, I can not stay home. I have kids and a house to run. I don't have the option of not working. Plus, I love my job and being in control of my own money.  I am not 'scared' of the virus, just doing my best to not get it. Most of the people that I know who have gotten it, have had a light case thankfully, but what if I ended up with the respiratory version? I don't think my lungs could fight it off.  I would hate to have fought cancer for so long and be taken out by this.  And I wish the world would be more respectful of the people that are in my situation. 

So, that brings us to now. To be honest, I struggled for weeks leading up to this appointment.  I reached out to my chemo doc and let him know that I was not on the chemo and my reasons for it. He wanted me to get a lung scan and meet with him also this time. Between the head and lungs I felt like a lot was up in the air and I didn’t know what kind of news I was about to hear. I’ve been extremely tired after a day of work -especially with lower back pain, I’ve had a light cough for weeks,  and sometimes a little shot of pain in my chest. I wasn’t sure if this was stress, or my lungs getting worse, etc. It doesn’t help that I’m either at work or home (or Twin Lakes when the weather was nice!). I am very much a homebody but I liked my time out with friends and/or traveling.  So it’s been hard to ‘escape’ my own mind. I have read ALOT of books, which is a great way to keep my mind busy!  I’d love to escape town, get an airbnb somewhere tropical, and sit in the sun w a book. Just to run away for a little bit...but I’m sure others are feeling the same way. There is so much negativity and complaining in the world right now too, which is really hard to see.. So I am doing my best to keep my mind calm in any way that I can. Some days I shut down and don’t talk to many people. I'm thankful to have my kids keeping me busy when I have them and of course my pup Nala who is by my side 24/7. Haha.

My friend Stacy came with me to this scan. It was great! We had warm weather, ate great food, relaxed, etc. Stace and I do a lot of trips together so it kinda felt like it was a fun trip and not just for scans. 

I had 7 appts total this time. (Scans, meetings with Docs, bloodwork) It was busy that’s for sure! But staying across from the hospital was great again. I’d run over for an appt, then we would go do something fun. I had a jaw scan this time too, I’ve been trying to get my jaw looked at for so many months and it’s finally happening!! At my appts 3 months ago, my neurosurgeon pulled some strings to get me in with the oral surgeon there.  I meet w the doctor in a week on a video call.  Fingers crossed he has some sort of solution for me! Although I can say, my jaw isn't as bad as it was a few months ago, but it definitely still needs something done to fix it. 

I met with my chemo doc, Dr Robinson, first. It had been 6 months since I've seen him so I was prepared to hear not the best news about my lungs. I think this is what has been stressing me out more then anything. And like I thought, the news wasn't great.  Areas have grown in my lungs and some new spots have shown up. The cough I have is most likely a side effect. If I were an older person, I’d probably be feeling more side effects then I do right now. And if I went another year without any meds, I most likely wouldn’t be in good health. 

The left is now (scan is a little bigger), the right is 6 months ago.

After seeing these scans, I surrendered to the chemo. I told him I am ready to get on it and of course he was happy to hear that. I was going to figure out a way to work less if I needed to, whatever had to be done to get on it.  But, the chemo I will be on, doesn’t attack your immune system as much as most others do, plus I’ll get a blood draw regularly to keep an eye on my levels. That gave me a peace of mind.  The goal of the chemo is to slow the growth. New meds are constantly coming out and hopefully this chemo will give me more time on earth and during that time a new med will be made that responds to my cancer.   Okay - so leaving his office we both felt good about our plan. I’m now just waiting for insurance and all that to work out so I can get on the med. 

My last appt was with my neurosurgeon, Dr Pollock. He pulled up my scans and reported that the tumors have shrunk! That was amazing to hear because I have never seen a scan or heard that anything has shrunk! And the radiation will keep shrinking it. So that was awesome to hear.

 But, there was some negative news at his appt.. the radiation has caused some brain swelling. They could go in to remove the tumors to help calm the swelling, but the reason we did radiation was so we didn’t need to do a surgery. I am starting with a steroid, a high dose then slowly lowering it, to hopefully calm the swelling down. Luckily I’ve had no headaches or seizures which can both be side effects to brain swelling. Steroids can have a lot of side effects too - such as, insomnia, jitters, no appetite, weight gain, etc. So far, its been okay though.  I get kind of foggy and jittery in the evening, but thankfully during the day has been fine. 

I am going back down in two months for another set of scans.  We will see how the lungs are doing on the chemo - if the growth has slowed.  And we will also check the brain swelling to see if it is going down from the steroids. This has all been a lot to process, any time I hear something positive, there seems to always be a negative. But I also feel like we have a handle on it all now and that feels good. We are trying to take control of each issue and hopefully over time the problems will be solved.  I am happy to be going back in two months. I like knowing they will be keeping a close eye on me and I'll be curious to see if we have made any progress yet. 

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 

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. 

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!