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.

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! 

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!