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:)