Update on Meds & MRI

So I have started on my new drugs. No it's not some new "medicinal" with questionable legality. It's the Tykerb and Xeloda! I have been on Tykerb for almost a month, and I've almost finished the first round of Xeloda (2 weeks on with 1 week off). So, let's start with Tykerb....initially the plan was to start with this one, and start Xeloda a week later. Peachy. The Tykerb should simply be called, "shit-your-pants" med!! Essentially it caused liquid crap. Although not ideal, I was willing to live with it and accept that I would be spending a decent amount of time in my bathroom. After a week, I was told to stop and the dose was reduced. This is a pretty common practice with this drug, so that eased my mind. I wasn't a complete wuss! After stopping, and waiting a few days my craps went back to normal. I'm sorry but this post may be crazy boring, and have a lot to do with poop! Never thought I'd have this much focus literally on "crap," but this is the lovely, bit of a crapshoot life, we call living with mets!

Once I started on the Xeloda it seemed fine. However, I've come to realize these lovely side effects kind of creep up on you. Little things really. Once you're on a combo of "crappy" meds, well than the chances of liquid crap once again goes up. Ugh. Seriously!! The newest thing I've noticed is the extreme nausea I have when I wake up in the mornings. To the point that I am now throwing up. The nausea simply comes out of nowhere and I don't like it!! The worst is when I'm at the grocery store and all I can think of is where on earth would I puke if need be. You scope out stores for bathrooms...oy vey I tell you!! At this point my hands and feet are holding up as these meds have the potential to cause hand/foot syndrome so I suppose that's a positive.

I also had my repeat MRI a month after my last one to assess if this bugger in my parietal lobe of my brain is chilling out, or being a free loading mooch and growing. Unfortunately, I have a freeloader. Sigh. Am I surprised?? No, not really. However, when I went for this appointment I wasn't feeling great. Firstly, it was a lovely (aka:frickin shitty) day for liquid craps plus I was extremely nauseous and lightheaded. Plus, since it was an earlier appointment in the am I also realized that my medicinals had NOT quite worn off. Oy vey indeed!!! Seriously, I felt like my eyes could barely open, and as we waited for the neuro rad onc I asked Chris if I at least looked normal and his response was; "ummmm...no....you look pretty high." Oh shit I thought. Just lie to me!! There was no way I thought I would last the consult PLUS get fitted for the radiation mask. I typically have no problem waiting but I felt seriously shitty!!! Of course these are the days when there has to be a resident. Double wonderful:). All I could think was please, please, please be a resident that has his shit together, has read my chart, and doesn't sit there talking for the longest possible time. Sure enough he seemed nice, and the first thing I blurted out as he started talking was: "what's with the met I have, has it grown?" He looked at me and said, "yes, so the one in my parietal lobe has grown another millimeter and then the one in my occipital lobe has grown too." Wait, back the bus up Dr. Resident what other one??!!! I never had a met to my occipital lobe as per my last scan so WTF???!!!!! He looked at me wide eyed and said, "oh...Dr. X can discuss that with you further." Oh double shit!! Then he decided to do a full neuro exam and all I could think was; this will be great considering I'm high as a kite!!!

Dr. Resident went over his full neuro work-up, asking me all sorts of questions which I answered all with: no, no, no. Ultimately, I wanted to speed this process up so I could talk to my actual neuro rad onc. Then he turned towards my hubby and asked, "have you noticed any changes in her?? Clumsiness??" Firstly, I am the queen of clumsiness all the time!! This isn't anything new. In the end of his lil assessment I was pretty proud of myself that I passed this test despite still being high!! I was impressed by my functionality;). I also learnt that I MUST take my medicinals earlier when I have early am appointments.

Anyhoo, I should give a little bit of background on our lovely occipital lobe which sits in the back of our heads. This area is our vision center, so requiring radiation on this part of the brain poses a smidge bit of trickiness. I, for one, do not like "tricky" things in my brain!!!! As you all can recall from my last post I am already blind as can be, so the potential for any more vision loss is not peachy! I saw myself with a cane that the blind use and immediately thought of the train wreck I would be, most likely taking people's eyes out with my damn cane. No I would NOT cope well with more vision loss!! My blood brain barrier is very obviously out to lunch, and I have no bloody clue if it'll return at this point!!!! My blood brain barrier seems to get distracted and doesn't have its guard up anymore!!!! It's like a dog for goodness sake; mine should be referred to as; blood brain....oh look a squirrel!! Faaaaaack I tell you!!!! At this point I feel like there is no real "barrier." We are letting people into the party who weren't invited!!!!!!! Therefore, at this point, my plan of action will be to NOT go ahead with radiation. Let me elaborate. These current drugs have shown the ability to cross over the blood brain barrier. Therefore, simply due to the location of the occipital met, and all things considering they feel it would be best to try the current chemo for a few rounds and see if it shrinks the mets or stabilizes them. If that's achieved then we will continue with the brain MRIs every three months, and simply monitor. If the mets progress then we will do stereotactic radiosurgery to them. I'm hopeful these drugs can delay progression and get my brain in order. Here's hoping...begging...just WORK!!!! I have plans and the brain mets are putting a pickle in them!!

Essentially when I followed up with my medical onc about everything, and I told him about all the side effects from my current drug regimen he had a theory as to why I may be having emesis many mornings with extreme nausea. He felt that it may be the drugs getting through the BBB, and possibly causing inflammation around the sites where I have the brain mets. Firstly, as much as I normally would NOT be fond of swelling in my brain, under the circumstances, I'm kind of happy in hopes that these meds are doing what they're supposed to do in my brain. I'm going to try and keep my current chemo dose as is, without resorting to a dose reduction, and simply add in some anti-emetics. I'll even prop some pillows up and see if that helps in the mornings. Here's to the meds working and less morning puking!!!! Fingers crossed!!!!!!!! PLEASE WORK!!!!!!!!

These photos have absolutely NOTHING to do with my above post, and this "scatteredness"  has nothing to do with my brain mets either;). These are pics of my lil nephew who is already 6 months old, and is now wanting independence...noooooooo!!! This means he is actively trying to get away from me when I just want to hold and love on him! I love the pure joy and happiness this little life brings to mine:)

 

 

15 Fun Facts About Me:)

Nancy's Point challenged other bloggers to list 15 fun facts about themselves, so here are 15 things you may not know about me!

1.) I spent almost 6years of my life living in California for the first part of my childhood.. maybe that's why I love the sun/heat so much!!

2.) I still sleep with my blanket that I have had since I was born. After I was born my mom told me that they wrapped me in this blanket and took a picture. Later, when they brought me back from the nursery my mom said they handed her a baby that was, as per my mom, not me and "extremely ugly" (her words not mine). She wondered how her "perfect baby," suddenly looked like a wrinkled old man. She realized that the babe wasn't wrapped in the blanket, and told them this was not her child. After a bit of confusion she showed them the pic of me, wrapped in this blanket, and we were reunited. Thank goodness because I love my family:). Maybe that's why I sleep and travel with it to this day.

Yes that's my blanket with the rainbows, but there is no color left to it anymore. It's pretty raggedy at this point!!

 3.) I am "artsy fartsy." I love detail, and I enjoy making things look pretty. Whether that's a meal, some art project, or decorating my home!!! I am a perfectionist and I won't stop until things look "perfect," or I curse and simply walk away if it's not up to my standards. I guess I'm always on the extreme whether it's on one end of the spectrum or the other!!

4.) I got my husband for my 20th birthday!!! Ok, let's elaborate on this. My friend got me a generous tour of a fire station, and he happened to be one of the lovelies who was there. We went on a double date, and have been together ever since!!

We were so young!!!

5.) I got engaged when I was 23 and we purchased, and built our first home shortly after. Best decision I've ever made...BEST partner in crime, plus he puts up with me which is not an easy feat;)

6.) I Love gardening!! I love planting and watching things grow. I take pride in my plants...yes, the more I write the more I wonder if I'm actually a 70year old!!

My flowers, along with my favorite little ladies!

 7.) I don't like to ask for help...EVER!! I know family and friends always want to help, and at times I know I should accept, but I simply never do. I typically feel like I can handle anything with my health which I feel can get me into trouble. I typically allow things to get pretty bad before realizing, "oh shitters I'm in trouble." Hence, why I probably have the prognosis I have now...Sigh. Public service announcement; trust your body and remember: IF IN DOUBT CHECK IT OUT!

8.) I LOVE Las Vegas!!  I've been going every year since I was 2. I typically go a couple times a year, but sometimes I don't even go on the strip. I usually stay in Henderson, and I used to dream of finishing nursing school and moving there. Now I just go every single chance I get!!

9.) I am a nerd. I love learning new things and as a child I loved school!! When I used to get bored I would look for State Bar Exam questions and try to answer them, lol. Ok, get your laughter out with this one because when I tried to do these questions they were bloody hard, but I really enjoyed trying to answer them! My brain definitely was not made to be a lawyer, but I can certainly argue;).

10.) My vision is awful, as in I may be considered legally blind, and I have a horrible memory. HORRIBLE memory. Sometimes my memory angers me, and then I walk into a wall cause I can't see shit, and then I forget where I was going. Just kidding...well....it's pretty close to being accurate actually; sadly. Thank goodness I'm married because the more I write the more I realize how much I am NOT a total catch!!

11.) I never did drugs. Ok, just wait everyone because now I use medicinal marijuana as everyone knows but I never did any other drugs and rarely ever drank. Now I use cannabis and have an occasional drink;). Thank you cancer for pushing me to dabble in drugs (medicinal only) and resort to drinking alcohol, however it has created very interesting discussions with my hubby late in the evenings;).

This is a typical evening on my medicinals...Don't even ask me why I have the flashlight over my head...maybe I felt like I needed more light??

 12.) I HATE dishonesty. If you lie to my face and I know you're lying then that's probably the end of our friendship. Arrogance and dishonesty are traits I can't stand and I will not waste my time around people who fit into these categories.

13.) When I learnt there was no Easter Bunny I was devastated, lol. This sounds so ridiculously stupid, but I can still remember this so vividly. I was about 10yrs old and I walked in on my mom colouring Easter eggs...well that was the loss of my innocence as per me!

14.) I'm a complete klutz! Yes, I'm clumsy. I once accidentally backed out of my driveway without looking back (NEVER do this), and didn't realize my brother's lovely, and very expensive, 7 Series BMW was there, and I backed into the side. But wait as it gets worse; I didn't understand why my car wasn't reversing so after I hit his car I pressed the gas and essentially scratched the entire side of his car!!! I essentially fled the country fearing for my life and entered Witness Protection!! Just kidding I didn't run, although that seemed like a possibility at the moment. Thankfully, my brother kept his cool and didn't kill me as I am still here!! Secondly, when my hubby and I were in Mexico, I walked right into a glass window and chipped my tooth! The glass was so ridiculously clean that it didn't even appear like there was glass there, but sure as shit it was there!! These are just a couple of the things that show my clumsiness. The list could go on and on, but I will stop at this...believe me my friends could list many more!!!

15.) I'm Hungarian and speak it fluently. English was my second language. I didn't learn to speak English until I started kindergarten, which I dropped out of because my teacher was too loud and it scared me. Yes, I used to be very shy and quiet as well!

VEGAS BABY!!!

After I learned of my craptaculous cancer once again looking for real estate in my body I needed, and was excited, to get away for a little while. So my bestie and I went to Vegas!! I mean naturally what else would I do!!! The land of gambling seems to parallel my life which seems a smidge bit like a gamble at times!!

I love the summer heat in Vegas!!! When we got there in the evening, and checked in, we were already tired. I know people may stop reading at this point because we come across as two vey boring, young ladies hitting the hay early in Vegas, but I assure you we are not! Nope, we ordered room-service. I was hungry and tired, however I couldn't quite grip the cost of how inflated these wings were!! I mean once we did the lil math calculation they came to a whopping $3.00 a PIECE, AMERICAN!!!!!! I am not cheap, BUT I am on disability and this price was beyond inflated for my liking, lol.

Our vacation consisted of a lot of relaxing! I am definitely the type of person who likes a calm, relaxing vacation, spent outside by pool. Essentially, during the days this is exactly what we did! Honestly, this was not the type of weather where you're outside, walking on the strip. It averaged around 45 degrees Celsius. Our hotel was lovely in the sense that the pool area was huge, and it had a lazy river. Essentially we would spend our entire days on the lazy river. This was perfect. I felt sooooo good!! I had no pain and simply felt wonderful. Sometimes I wonder these days if it's the actual vacation that I enjoy so much, or whether it's the ability to get out of my head, the medical routine, and simply live like any other healthy person that brings me joy.

Our vacation also consisted of a couple shows. Our first show was to the Thunder From Down Under. My bestie is the sweetest, most thoughtful, and caring person I've ever met!! I knew this show may have been a little bit outside her comfort zone, however she was a wonderful sport!! We both quickly learnt that this show was "interactive." Fun fact to any ladies who may want to attend this show: you do NOT wear a cute little sundress to this show. We were definitely out of context in comparison to how others dressed!! We looked like we were headed to an afternoon tea...maybe that's why the men looked at us at the end of the show and said, "awe...you two are so cute...just adorable," hahaha. I'm a very happily married woman, but Chris gave me his blessing to watch this show. It was definitely entertaining and we laughed our heads off!!! Before going in to see the show, we sat down at a slot machine. I ended up winning a $100 and simply texted my hubby stating, "I won a $100!" It wasn't until he texted me back that I realized I should have elaborated. He wrote me back, "hmmm, I don't get it. You went to see strippers and YOU got paid?" I quickly realized I should proof-read my texts before quickly pressing send, lol. This was NOT a bucket list item, as I would probably have some pretty low standards if I simply wanted Australian stripper men, lol. Sadly, Australian Weiners weren't my "dying wish," however I must say it was extremely entertaining! Thank you men for coming to America and pursuing the American Dream as you all seemed to have fulfilled many of these women's dreams as well!!

The next day we went to Brad Garett's Comedy Club. Firstly, I LOVE comedy shows!! These are my favourite types of shows to go to! I always think of Brad Garett from Everybody Loves Raymond, but his comedy is NOT pg at all. It was vulgar, but sooooo good!! I mean to the point where a couple times I almost spat my drink out because I was laughing so hard. The other headliner who was hilarious was Drew Thomas, and I laughed through the entire show!! I would highly recommend it!! Just remember it's vulgar, so if that's not your cup of tea, then I'd definitely say don't go;).

The only time I truthfully thought about cancer, and switching treatments, was when my body gave me a little nasty reminder that I'm sick!! This only happened a couple times and they occurred when we were out. When I'd have a hot flash, and it was scorching hot outside, I would become extremely light headed and felt as though I was going to pass out. I've come to realize that I just need to trust my body, and do what feels good. Thankfully, I didn't pass out and we simply went abouts our days based on how I felt. Thank goodness for a totally understanding bestie!! It frustrates me when I feel like my body is limiting me. It's hard to not think of the past when I could go non-stop and feel absolutely fine. I would say it was a successful trip and I'm so glad I had the chance to get away with my bestie!

In terms of my health, just a tiny change. I have started with Tykerb, and will see how it goes before starting Xeloda (the oral chemo). If all is well, and I don't need a dose reduction, then I'll start the chemo in a week. In terms of my pesky brain...we will repeat the MRI mid month, and if this spot shrinks or stays stable then we won't radiate YET. This is to see if these two drugs affect the cancer since they do cross over the BBB. This would be ideal as we never want to go crazy with radiation, so I'm on board with this and hoping I can buy some more time!!! Here's to some working drugs so I can plan my next vacation back to Vegas:).

View of the Las Vegas Strip!

Selfie before eating our pricey wings!!

The lazy river. Honestly, I could float around in circles. Love this activity:)

The Lazy river

 

Just enjoying our evening. Fun tid bit with this pic: We both wanted this photo to be done FAST as we saw a couple cockroaches in the bushes behind us!!!!!!!!! Those are nervous smiles;)

We actually wanted the background of the strip in this, but we ended up with a bus?? 

Brad Garett: sooooo funny:)

 

We actually thought this was a "skinny Buddha," but it's not (We may have had a smidgen of alcohol prior to & we aren't typical drinkers). It's Lord Mahaveer or Mahavir??

Great dinner with a lovely view!!

And just because...may have also had a smidgen of alcohol on board??

Pre Thunder From Down Under

 

The Thunder From Down Under, or as my hubby referred to em; "men who made terrible life choices," hahaha.

The downfall of buying a float to ride the lazy river - you must deflate it!!!!! Yes, I needed a break by the time I got all the air out of it!!

And the one thing I didn't have on my trip...you guessed it: my MEDICINALS!!! Once again I resorted to sleeping pills which doesn't exactly give me the greatest night sleep.