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! 

May 2018 Lung answers, chemo pills and new scans

Hello all! Time for an update.  After the lung biopsy it took a while for me to feel normal again but I am now good as new! A few weeks after the biopsy I got a call from my Milwaukee doctors telling me that what is on my lungs is the same kind of cancer that was in my head. This is called a metastatic growth. Cancer cells from my brain traveled to my lungs.  It is what I expected to hear but it was still hard to hear it at the same time. I would much rather worry about one part of my body, not two! But I know we have these different chemos to start and I have faith in them working for me. 

About 6 weeks ago I started the chemo pills. A few we had to fight my insurance for. Most pills came through but one did not so my doctor ended up upping my dosage on the others to make up for the pill we lost.  I was really anxious and nervous about starting these pills because I wasn’t sure what my side effects would be. There was long lists for each pill but everybody is different and you are each affected differently. Some I took in the morning and some I took right before bed. The one before bed, I take two different nausea meds an hour before and hopefully by sleeping any nausea I would have, passes. Luckily I can say I was never nauseous on any of these pills. Some days I feel off and I felt tired most days but that was the most of it. I had many different skin problems though.  From rashes to zits everywhere, and my hair color changing to white! I had some face swelling too and a bit of peeling skin on my hands and feet. The peeling can turn to blisters which I was super worried about but it never got to that point.  Because I didn’t feel sick, I can handle these kind of side effects. But the last three weeks my white blood cell count was low and I was not able to be on any of pills. Luckily besides being tired, I really couldn’t tell that anything was different.

I just got back from being in Milwaukee for scans and I was able to see Dr. Kassam and Dr. Bobustuc.  When I first had this appt made, I was only seeing Dr Bob but I got a call a few weeks ago that Doc Kassam wanted in on it so he fit me into his schedule too. Dr. Kassam is usually in the OR on Thursdays but made it work to see me.  When we got up to his office, both doctors ended up in emergency surgeries! So we had to wait a while but eventually Dr Kassam came up to see us. We went over my head scans and I am happy to report that there was no change with them! He said he was worried about what he would see and was so relieved with the results! 

After we were finished with him, the nurses gave us some certificates to get food from the café and said Dr. Bob’s Nurse will call us when he is back in the office. We barely got down the hall and we got a call that he was ready to see us. Once in with him, he said there was a millimeter of growth on my lungs but that that is very little. He thinks that the pills are helping but we just haven’t had a chance to be on them long enough yet to really see what they can do. 

He changed up my doses and instead of taking them for a week straight, I am going to be taking them every other day for that week. And then I still get the next week off. He also gave me a few tips on things that support bone marrow growth such as beans, honey and red wine! This is to hopefully keep all of my cell counts up so I can continue on these pills consistently. He reminded me that I am the very first person to be on this mixture of pills so trial and error is what we will do until we find a dose suitable for me. 

Celebrated another birthday!

I was happy with the results of this appointment. Of course I wish there was zero change in the lungs but I also know I could have heard a lot worse than I did. My next appointment is not for three months and he even offered to switch it up where the next one is only a lung scan and then three months later would be a head scan since I have gone so long without change. But, I was too nervous to do that yet. So in three months we will do a scan of both the head and lungs and if that one comes back good then we can start spacing them out farther. Three months will be the longest I’ve gone in a year without a scan so I thought that was a good starting point! 

I am relieved that everything came back the way it did and that I can have a good, normal summer! Last summer I spent  recovering from two brain surgeries and went to Marquette for seven weeks of radiation.  Besides being on the chemo pills, this summer will be much better! I am happy! 

Time for summer at the lake!

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! 

Hope and Surprising News. Appointment Dec 2017

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

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

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

killing time!

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

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

Checking out the scans while
waiting to be seen!

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

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

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


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

Bad news and waiting for answers

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

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

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

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

The white spot in the middle
is the tumor.

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

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

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

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

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

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

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

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

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