I can't even.

I don't want to crap all over my last post, which was pretty sunshine-y but real talk?

I don't feel good. I have scans tomorrow and I don't feel good about it at all. The one thing that keeps me from sinking into a pit of bottomless despair is that I know there are other things we can do.

I've felt kinda crappy for a couple of weeks, ever since I got back from Miami Beach, really. I've never wanted to have a cold so badly in my life. I'm coughing every so often. When I cough I lose my breath. I'm short of breath going up stairs. I don't know what would happen if I rode a bike. I don't have a fever, I just feel lousy.

I'm anxious. I'm scared every night that I take my chemotherapy drug that I'm going to wake up the next morning vomiting. I'm terrified that I'll have to either go to work sick, or call in. I hate being a burden on anyone, much less an employer. I know, I know.

It's not my fault.

You can tell me that until you're blue in the face and it doesn't matter, though. In addition to my anti-nausea pre-meds, I've been taking Xanax nightly to deal with this creeping fear/anxiety. I don't like letting people down. I hate it when people think I'm doing a second rate job (being social, being a friend, writing e-mails/texts, whatever) on something on purpose.

I know 99% of people understand this. I'm not vaguely calling anyone out, I'm just saying what I'm saying to say it. So it can be said. I said it, get it?

Stay with me...

Positives? Okay, sure. Bone pain has been less, overall. I have discomfort in my shoulder the most lately, but a warm heating pad helps. So, there's that - but do you know what makes me SO ANGRY? Earlier, I couldn't really walk any distance because my legs hurt. Now I could probably walk to the drugstore and whatnot but I'm so tired/short of breath that it's a chore. I would kindly like my body to stop screwing with me. 

I think if it were a sentient being, Cancer would unabashedly admit that it enjoys making people miserable. It would laugh and laugh as I cried and cried. Cancer would find my coughing HILARIOUS.  

See what I did there?

Seriously, I hate you Cancer. I wish you'd die (and not take me with you).

So I would say yeah, I've got "scanxiety". I have scanxiety on steroids. I have mega-scanxiety. I want to know, but I don't want to know. If it's working and I've just got a cold or whatever, let's fix that. If Zykadia is a big fat failure, let's move on and not dwell too much on what went wrong (at least I don't want to dwell). 

I hope that everyone is kind to me tomorrow, and if there's bad or less than good news to give - let's focus more on what's next and let's get stuff done - that's what I want to do. I can get better. I've done it before, it's just about trying another key or another piece of the puzzle. 

Today though, seriously...It's hard to be happy. I can't.

Back in the saddle...Again!

I've been so lucky to have caught several days of good weather in the past couple of weeks! Miami Beach was wonderful (even on the "cold" day) and then we saw family in Columbus last weekend for St. Pat's, and then it was pretty decent back home for a day.

I got to go on a short bike ride yesterday, and that was good. It was the first time I'd been on my bike since last fall. It honestly felt a little weird. In Miami Beach I'd ridden a small step-through bike that seemed a lot lower to the ground. Honestly, my seat was probably too low. Anyway, it was weird - but it was good to ride again - even if the ride got cut short (long story!!).

Am I doing this correctly?

I've got my eye on a recumbent tricycle and I hope to test drive it very soon. Riding yesterday wasn't painful - just...weird. My biggest concern was lifting my leg over the seat and crossbar on the dismount. That's a tricky thing right now, and I was careful not to trip over my own bike or hurt my leg any more than it hurts.

My time on the bike was pretty good. I didn't feel any pain in my hips or legs. I did brake a little hard at my first stop light and that scared me. The seat post is a little high, but it can be fixed.

Meanwhile, I've been having some anxiety recently about my health. I'll have a scan in a little less than a month, but I'm fearful that the medicine I'm on isn't working. Xanax helps to allay this fear, which is good.

Since I got back from Florida I've had a bit of a cough (planes are vessels for disease, I know). I am out of breath after going up stairs while carrying something (could be attributable to a cold). I can take deep breaths, I can speak normally. I'm not wheezing, I'm not coughing up blood. I don't have a fever. Surprisingly, I wasn't particularly out of breath after riding my bike.

That, obviously... Is because bicycles are magical.

When I sit in a funny position, my leg hurts more (again, makes sense). Lots of this stuff is probably obvious, and my rational brain knows this.

Fire = HOT!

But my irrational brain thinks of course, that this is the pulmonocalypse and I'm deathly ill. In my defense, that's happened before. I will never not be afraid of things getting worse, or coming back, or spreading... No matter what happens. I could be disease free and would have a conniption if I ever felt short of breath. The fear will never go away.

I did get a new medicine to manage nausea that seems to work pretty well, most of the time. What usually ends up happening is that I'll wake up nauseated and then will be sick for an hour or so - during which time I take another medication (anti-emetic) which works but makes me sleepy. Cue me falling asleep on the bed with a constant stream of King of the Hill going on in the background. I can sleep through half a season, sometimes. Later on in the day I might feel human if I eat something. Steak usually does the trick, honestly. I have been known to eat a steak with nothing else - just to get the protein and calories. Also, steak rules.

One thing about Bristol Myers Squibb...They sure know how to cook a steak.

Tonight I'll attempt to eat some corned beef - it sounds good so that's definitely a start! With yesterday's dinner I was pickier than my Brother-in-Law... I got a sandwich at Melt and picked off most of the green stuff, took the shrimp off of the bread and just ate the shrimp. I may have eaten a few pieces of the bread, but it wasn't much of it. I feel like I'm getting enough to eat, I think... Not sure if that's my brain telling me I don't want food because I'm satiated - or my brain falsely telling me I don't want or need any more.

The Breathe Deep Cleveland 5k walk/run will have a website up later this week. I believe it might be live now, but don't want to tell you to sign up for anything yet in case it might still be buggy (my contact at LUNGevity hasn't announced that the page is up, so I'll wait to post about it).

Today I'm giving you homework. It's time to make an upbeat playlist for those gloomy days. In comments, please leave your favorite upbeat song. You can also Tweet me if you'd rather do that, or leave your suggestion in my Facebook comments. Help me out! (Note to Dr. P: Tubthumping is not allowed on the list.)

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. 

Insane in the Mid-Brain

It actually turns out that I have a total of six (6) CyberKnife sessions, and that today was NOT my last (as I'd thought). The first session targeted all areas of the brain affected by tumors except the mid-brain (10 tumors in all, including little "seeds".). The subsequent 5 are all to target the mid-brain tumor with lower doses of radiation. My medical staff felt that a single, heavy dose of radiation to the mid-brain would actually put me at a higher risk for permanent cognitive damage, so that's why it's spread out.

Count the birdies!

This is part of a back-lit mural on the ceiling above where I am when I'm receiving treatment. In reality there is a third panel to the right of the two you see. It's a lovely little panorama that reminds me of the canals of Tortuguero, Costa Rica. When I started treatments, I would count the parrots, and then the white birds, and then the (howler?) monkeys in the trees. It gets a little difficult to count them, because you can't move your head. During last week's second session, I noticed something.

What is going on with THAT bird? 

He's had an accident! That poor bird has collided with the metal strip piecing the mural together and he's presently in a world of hurt. Seriously, does it not look like he's just faceplanted? Now, before the treatments start I always look for "Faceplant Bird" and I have a muffled little chuckle (because of the mask, you see).

I've been sleeping a lot - taking naps during the day and falling asleep early and for longer periods of time. I have not had to rely on sleeping pills, but I did start taking Melatonin. I've also taken Flexeril (a prescription muscle relaxer) before bed for two days in a row now - the first night I slept continuously with zero leg cramps... Last night/this morning I woke up with leg cramps, so the actual correlation between Flexeril and no leg cramps is inconclusive at best (for now).

Real talk now?

I miss taking chemotherapy. My breathing has not been... As fantastic lately. They do monitor my O2 saturation while I'm having radiation and there's been no cause for alarm, it's in normal parameters for a healthy person - but I notice that it's harder to breathe after going up stairs now. It's a little harder to breathe at the end of a bike ride. It really could be due to humidity (I do notice it more when it's hot out, or muggy feeling) or the fact that I'm just stressed out about it. It could be allergies - but I've been off the chemotherapy drug for a couple of weeks now and I really wish I was back on it. They want to assess me in a week or so (with an MRI and CT) to see what, if anything the radiation has done to my head. At that point, they'll likely decide whether I should remain on the trial or continue on to traditional IV chemotherapy. They could also be hoping for results from the liver biopsy - maybe Foundation Medical was able to use a sample and they'll have something to say. All I can say is, hooray for anti-anxiety medicine.

See you Wednesday, Faceplant-Bird - I'm going to celebrate when my last appointment is done.