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.

I just wanna fly.

Here. Have an earworm.

When you have cancer you forget that you can also get "sick" as in get a cold, get a stomach bug...

I forget, anyway.

I sort of felt off the past day or so, I have a little cough that doesn't amount to much and my nose has been running for what feels like two years (no, seriously). This morning I woke up early because I had forgotten to do something for work before I left last night so I had to get up and send an e-mail, and I notice my throat hurts and sort of has that yuck factor to it. We'll see, but I'm pretty sure I've got a little cold.

This happened not too long after I left the hospital in November of 2013, too. I'd been in the hospital over two weeks and had undergone a fairly major procedure during that stay. I got a little virus and...

Freaked. Out.

That's when my doctor and the clinical trials nurse I was seeing at the time introduced me to Xanax. I can still remember sitting in the atrium area of the cancer center one late afternoon in tears, when the nurse asked me if I'd ever dealt with anxiety before. I really hadn't - at least, not from any medical standpoint. I've never really been one to hop on any drug bandwagon, so it never really crossed my mind. Cancer is stressful. It makes you worry, so what? You deal.

Except in some ways, I wasn't dealing. I did have issues with anxiety that I was not addressing. I do not mean for this to be a glaring advertisement for Xanax or anything like that, but there have been some times where it has really helped me out. Anxiety medication is not intended to be an escape. It will not make those problems go away - that's important to understand! Sometimes I feel like I'm a broken record because I get a pretty serious feeling of déjà vu when I start to type out the words "ask your doctor" but it's honestly the best thing to do if you're not feeling right, or you have a question about your care and well-being. 

Moving on, I meant to write about something last time and I completely forgot. The topic contains so much content I didn't feel like editing my last entry, but it didn't feel like it warranted its own new post either (maybe it does, who knows?).

I am really afraid to make plans. Two years ago we'd made plans to go see Andrew Bird perform at one of his rare Gezelligheid shows in Chicago - they're shows that are usually performed in cathedrals/churches (video) in only a few cities. They're more intimate shows, and I just love the acoustics in big churches. I'd really wanted to go to one for a long time, so I persuaded my husband to buy tickets for a show in Chicago in December of 2013. When I asked him, I was actually feeling good and figured it'd be a good time. 

I didn't get out of the hospital until just a day or two before the show. I was in no condition to ride in a car that long, or sit at a concert. We didn't go, and I was heartbroken. I really didn't feel like I could, or wanted to ask to go anywhere again. There have been no Gezelligheid shows since.

Now, we have plans to travel in May and June. I'm excited, but I'm horribly pessimistic about it. There isn't a day that goes by where I don't worry about whether I'll be able to go or not, or who will go if I can't, or... Well, the list goes on. I have told my husband that if for some reason I'm unable to go on these trips, he should still go - and he does not agree with me. Go. Go. 

Take the damn trip, you!

I really should just think positive about it - just like with everything else... But it's hard. What I kind of want to do, is have a tantrum about it. Dammit, can't I just go on these stupid trips? Cut me a break, here!! Even if I have little to do than be a lazy tourist, I want to be one. I want to go to California. I want to go to Colorado. I have never seen these places before and I hardly see a point in waiting to go. LET ME BE A STUPID TOURIST, OKAY!? (end flailing)

Waiting for what? When is the perfect time to go, really? 

I don't feel like I can make these plans though, or that I deserve to in some way - and I know that's cruel to say (even about myself) because I totally deserve to go on a trip, I don't care if it's 50 miles away or 5000 - I should be able to go. I'm sick of feeling this way.

I'm going to go. Don't mess with me, universe. 

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.

Just the basic facts, can you show me where it hurts?

Come on, now

I hear you're feeling down

Well, I can ease your pain

And get you on your feet again...

-Pink Floyd, Comfortably Numb

There's something a little freeing about a bad diagnosis.

When I stopped the clinical trial, pain came. My right hip started to hurt again. My legs got stiff. Recently, my shoulder started to ache and make my neck stiff. I blamed the cold air, anxiety about the lack of current treatment... But you can't diagnose yourself.

Listen to your body - even if you're afraid of what it's telling you. I have such a good oncology team and I can communicate with them as needed. I mentioned the pain, and my doctor wanted to get a bone scan. The scan turned up additional spots on each thigh bone, and my shoulder area.

When you can't have a cure, answers/explanations are the next best thing - for me, anyway. So that's why my shoulder hurts. That's why my legs have felt weaker. An answer, even one that could have really been a lot better, feels like a weight lifted. I'm going to try a new (to me) medication that is another ALK inhibitor (Zykadia) and see if that works. It looks like radiation will probably be on the menu, soon.

I'm destined to be zapped, hooray!  I mean that hooray seriously - I've responded well to radiation in the past.

I've been ridiculously sad lately. I called off twice last week because of the pain. I contorted myself in odd positions and plied myself with pain meds and trash television to take my mind off of it. No matter how sad I get sometimes though, I choose to live. We will try and try again.

No news isn't always good news, and bad news isn't always as horrible as it seems - sometimes it just changes your path.

Never give up. Never surrender.