Told Ya.

Yeah, so the scans weren't so great. Not like "Oh my god, your lungs are going to explode" but more like my lungs looked "different" and of course, my liver continues to be an asshole.

So yeah, whatever. I actually felt better after hearing the bad news because I knew I felt crappy. It wasn't a surprise, really. Plus...The next words out of the mouth of my oncolgist were:

"I have a plan..."

And yeah, I might've pictured him as Willy Wonka after he said this, only because he was really pretty psyched about this plan - and not like a "OMG THIS WILL TOTALLY WORK FOR YOU" but if you've ever seen a scientist get excited about the way stuff works, the sort of pure whimsy and excitement that you hear in their voice or see in their faces... Yeah, like that.

The (sort of) bummer is that I'm back on oxygen. I say sort of, because I actually feel a LOT better on it. When I got home and slowly crept up the meager amount of stairs to my house/apartment I threw myself on the couch (walking past the condenser) and gasped "Turn it on, please" which somehow magically my mother understood - flipped the switch and handed me the tubes. Within a minute, I could breathe without gasping. An hour or so? I stopped coughing. It's supposed to be for when I'm moving around but they didn't bring me any portable canisters - but I want to go to Target tomorrow so I might have to be that jerk that takes a motorized cart and drags a canister the size of an adult leg behind me. Who knows.

It's not really a negative, though. Yeah, the plastic tube across my face certainly is a kind of beacon that hey, there's something wrong with me. People will probably make assumptions, whatever. Why isn't it a negative? Let's think about this. It makes me feel better. And let's be honest, if wearing neon orange boyshorts in public makes you feel better, do it (unless it breaks some sort of law where you live). No, that's a bad comparison to make. Oxygen = good. Whether I get it straight from the air around me or from a condenser or tank, it's a good thing. I will deal. I'm not even the slightest bit bothered by it, honestly.

So the fact that the medication wasn't doing a whole lot but making me throw up, guess what? I don't have to take it anymore!

I'm in the paperwork phase of another clinical trial (remember that plan?) for some promising Immunotherapy stuff. I'm serious when I say my doc was excited about it. I kind of hoped he would have made some crazy gesture with his arms and would have said "Just look what SCIENCE can DOOOOOO!"

Muhahahahaha!! (Ignore the gun in Boris' hand)

So yeah, we wait. That's okay. In the meantime I will breathe and the world will keep on turning!

Hey, sleepyhead!

This is me, lately. I have been wiped out, and have really enjoyed naps and sleep. This weather hasn't been kind to me, to be honest. My chest tightens and I ache. I walk slower. Foolishly I went out on Sunday without taking any pain medication (my stomach hurt that morning and I didn't want to chance it) and ended up pretty sore after only walking around a store for 20 minutes.

I went home and took pain medication and took a nap for a couple hours. Much better.

Tonight, I have water aerobics and I'm just coming off of a three day stint of feeling absolutely crappy (nausea, etc...) and I still don't feel entirely right so I kind of  just want to take it easy. I really can't tell if this is laziness, or my body just telling me to slow down and take it easy. The idea of running to a car soaking wet from swimming doesn't appeal to me right now - but staying warm in my house, does. This is common sense, right?

Getting out of the pool is a little tricky (mets in leg) so I think I'm dreading that as well. They're tearing down the pool this summer and will have a new pool in a year or so (complete with steps instead of an old "ladder" that is really cement/tile that is built into the wall).

I think for now, I will listen to my body. I feel a need to be home, cuddled and comfortable right now. I will have my days in the sun.

Update, kinda?

We have chemo. It's been such a weird weekend that I truthfully had to go back and see what I'd written about last. What did I do this weekend? Let's see... Oh yeah.

Spoiler Alert: Boo didn't have Oxycodone.

I got a new (but old) prescription filled for Oxycodone on Tuesday. I say old, because I was prescribed Oxycodone when I was first diagnosed and I barely used it. It expired, and I essentially took it back to the pharmacy where I originally got it so they could safely dispose of it. I didn't like Oxycodone, and in lots of ways - I still don't. The pain I was having was immense, however... And this does the job.

Caremark dropped the ball and I had to wait an extra day for their special order pharmacy to deliver my chemotherapy. I didn't get to start it until Saturday night. I take five capsules once a day, at the same time each day (on an empty stomach).

Actual size* of one Zykadia capsule (*lie)

I woke up Sunday morning and didn't feel too bad. My appetite hasn't been spectacular for a while now, so there wasn't a real change. I felt like I needed less pain medication on Sunday, but still took some. I woke up this morning pretty ill, though - as in sudden onset. My husband had a morning meeting so I asked if he'd swing back and get me a little later so I could get my nausea/vomiting under control.

I relaxed some and even fell asleep, and when I woke he was calling me to ask if I wanted to be picked up. My boss also asked me to make sure I felt well enough to work. I thought about it and still didn't feel right, but could have dealt with it. Then I realized there's a portion of my shift where I would not be able to quickly access a bathroom should I need it, and decided to give myself another day to adjust to the medication. More sleep. Sleep has been nice. I kind of wish I could do it more.

So that's it for now, just hanging in there. I'm sort of tired of winter, I'm sure Boston is more than I am. Can I have sunshine now, please?

I am trying not to post on Facebook much. I realize it probably looks like whining/complaining so I've been hiding from social media overall. I'm pretty happy. I wish I wanted to eat more, but I'm hoping that gets better soon. I wish marijuana was legal in Ohio - I'd love to try some High-CBD edible (low psychoactive - I have had Marinol and I haaaaaaaaated it). Get your heads out of your asses, Ohio. Weed could actually help some people.

The Chemo Monster

Today I would like you introduce you to my liver. 

That's right, that's my dirty pig of a liver - gobbling up chemo but not really getting any better. Dirty piggy liver, it eats it up and...Nothing. I had a CT scan, and yesterday was the first day an oncologist would not feign a toothy grin. Truth be told, I appreciate that. Battling cancer isn't all sunshine and roses. Most anyone who pens a blog and says it's been easy or only tell you the good parts is hiding something - maybe for your sake, or maybe for theirs. 

My liver hasn't wanted to cooperate for a really long time - the best response I had was on Alectinib... And even then there was slight progression. When I stopped Alectinib there was a lot of progression and that was what led me to go to traditional chemo (which didn't work on the liver either). 

I'm numb right now, and I'm annoyed. I'm not mad at my doctor - he's doing everything he can. In a way he almost seemed as pissed off/confused as me. I also think he and my nurse expected me to burst into tears. Not going to happen. I had my cancer cry when I was diagnosed...I still get upset but I'm not going to get discouraged. 

Right now, I'm in a little pain. I don't know if it's because it's cold or if it's the cancer. I sent an email to my nurse. I hope to be on a new drug next week. Until then, I wish I could just sleep. I really, really want to see some improvement/control in my liver. Please let Zykadia work.