Truth is the best medicine?

Yes, this is actually a photo of my pills I lined up on my messenger bag right before I took them. No, they don't actually say "This will make you vomit" but maybe they should, right?

I met someone online - another ALK+ NSCLC person who is on Zykadia right now. We shared side effects and ended up being pretty damn similar. In one message the guy asked me, "Do the stomach cramps ever stop?" I wasn't having them at the time, but I know how he feels.

I'm still unsure of whether I have a cold or just trouble breathing. I e-mailed my nurse. I have scans in a week anyway. I still don't like food very much and for me? That's just wrong.

Past Tense

Nil sa saol seo ach ceo,
Is ni bheimid beo,
ach seal beag gearr.

Lyrics (Gaelic) from Aisling's Song, The Secret of Kells

I caught myself speaking about bicycling in the past tense today, and it really bothered me. I was talking to a friend about ways to grab quick carbs and calories and I linked her to some energy cubes and told her;

"I used to use these on all of my rides."

Then I thought, what is this "used to" BS, huh? I can still ride. I will still ride. I do that sort of thing all the time. I'm like the Browns, I feel like I'm in a "rebuilding season" right now. First of all, I've been sleeping - lots. The only thing I can figure is that there's some sort of epic battle going on inside of me. (At least, that's what I hope)

No more saying "when I used to ride".

I also tend to split my life into BC and AD eras, but not how you'd think.

BC = Before cancer
AD = After diagnosis

That's sort of how things are described by me, when I'm speaking about things in the past tense. I don't think that's unhealthy or anything, it is what it is. On the day I was diagnosed it was like a meteor struck the earth and my surroundings, absolutely everything changed and will never, ever be the same again.

We're now officially "gearing up" for this 5k walk/run in Cleveland in June!! Please sign up, make and/or join teams and you'll be in for quite a treat! You can also donate to me directly, if you don't feel like participating.

And now, for my tangent of the day: Have you ever heard of Fordite or Detroit Agate? I want a piece of Fordite jewelry. I'm going to buy this one in a week if it's still there. From the pendant's page:

"Also known as Detroit or Motor Agate. Originally, Detroit auto manufacturers would tow cars on a rail and pallet system through the paint booths. Over time, the paint over spray would accumulate on the rails and skids, requiring the crews to remove the accumulated paint from time to time to avoid mechanical failure of the system. Some of the workers got the bright idea of taking some of this material home to cut and polish for jewelry. And so was born Fordite!

Cars are no longer painted this way, and haven't been since the 80's. Fordite is a generic term that refers to any chunk of accumulated over-spray paint. All Fordite is, by definition, a recycled use product.

The Fordite material used in this pendant was sourced from Detroit and is from the Ford assembly plant in Wayne, MI."

I have seriously put in in and taken it out of my cart 50 times today. I don't need it, so I'm not buying it. Yet. 

Breathe Deep, Cleveland!

I've been talking off and on about hoping to have some sort of event in Cleveland to raise funds for lung cancer research. After nearly a year of planning, I'm happy to say that our dream has been realized, and that Cleveland will have a 5k Fun Walk/Run to raise awareness and funds for lung cancer research!!

The website is a GO! 

When: June 27th, 2015
Where: Edgewater Park

Event Page
Event Facebook Page
Event Twitter
My Donation Page

I know a lot of people are doing a lot of different fundraising things, but I ask you to send a dollar or two my way. My goal is steep - and if I meet it I'm going to go even higher. Lauren Hill has inspired me to raise as much as I can for lung cancer research. If you don't know of her story, click here. She has raised over one million dollars toward cancer research. If we're being honest, I want to do the same. If you know someone with deep pockets, send them to my donation page!

Honestly, though...I'd be happier if a lot of people donated a little - instead of one or two people donating a lot, but I'll take it all.

MOVING ON!

I had a weird dream last night. I blame pain medication.

I was abducted. I don't know if it was by humans or aliens, but they appeared to be human. They took me to a place that seemed to be some hippy-dippy "New Age" healing center. They gave me radiation therapy with gemstones that were unavailable to anyone else. I was told I could choose one person to give the knowledge to, and enough gemstones to start the process of developing more stones.

I chose my oncologist. When I returned home (I got the feeling I never left Earth but who knows - this was a dream after all) I was scanned and was cancer free. Cool, huh?

Anyway, I did a bad, bad thing yesterday. I didn't take my chemotherapy meds. Intentionally.

Why? I really didn't want to throw up this morning. The nausea medicine I was given to take in place of Zofran at night before Zykadia actually does work, about 75% of the time. The other 25% I'm very sick for 10-45 minutes. I take medicine to help me stop throwing up, and then I fall asleep. I'm not entirely sure, but I think I slept most of the day yesterday.

Yes, I'll take them tonight and again the next night and so on. But honestly, it's starting to affect my job a little bit. If it's working, I will pick this treatment over my schedule - barfing or no barfing.

I'm a little afraid to be weighed again. I feel like I at least get one good meal in a day - with some snacking here and there... But sometimes I don't. Lots of times, it's completely my fault. I have frozen fruit in my freezer. I could make smoothies. My goal is to work on that.

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.)

Om Shimano Pad My Bum...

I have some pretty big dreams for this summer. I promise not to cry too much if I can't achieve them. First of all, I want you to get comfortable - we're going to see if we can't slip you into my brain for a minute. Pardon the worms, and wipe your feet.

My mind is a temple. With worms. A worm temple. Yes.

Listen to this. Don't click till you're ready. This is an investment.

Don't do it if you don't want to, but if you don't listen to at least some of the song, much of this will make zero sense to you. 

If you don't have Spotify, that link probably won't work for you. Try this one instead. I hope you have AdBlock because otherwise it's going to mess with your mojo if you get a Betty Crocker Ad before you get inside my head. Please try to go for the Spotify link, it sounds better. No, I will not help you install Spotify or explain it or anything. If you don't have it and don't want it, go for YouTube. 

Are we good now? 

You sure?

Okay. Press play.

Enjoy the beeping and the booping in the beginning, but once you get to about 0:20 in this song - get ready to spin. This is my legs burning in a fat gear on wide open pavement. 0:58 is the wind and the sun in my face. After that, we're gonna spin some more. We're invincible. Our legs hurt, but it's temporary.

We're in my brain. We're riding a bike, together. You and me, right now - in my brain. 

Know what this song makes me want to do? If you said ride a bike, get out. Of course I want to ride a bike. I have wanted to ride my damn bike since the pain got so bad I couldn't. No. I want to ride in a time trial again. Do I expect to get a medal? No. Not even close. I'd be impressed if my LCPR (lung cancer personal record) was over 11-12 miles an hour. 

But I want to get on my bike and I want to try. I want to rock that TT out and do it proudly. Who cares if I'm not the fastest? I'll probably be the slowest but I'm riding with janky lungs and all sorts of other things. Honestly, this post is probably making my oncologist's toes curl, and not in some Herbal Essences "totally organic experience" sort of way.

I don't know that I'll be able to do a time trial. I don't know if and how much I'll be able to ride at all, honestly. If it's relatively warm and not wet out, I'm going to try - believe me. 

Last weekend my husband and I escaped to Miami Beach and I actually rode a CitiBike for two miles. Those bikes are clunky, awkward and heavy - but they're bikes and I rode one. The only reason we stopped (aside from Miami Beach not being very bike friendly) was that it was 85 degrees out and I was totally not used to riding in that weather. 

I'm hoping my corner of Ohio continues to thaw and I can get back in the saddle soon, if only to see how it feels to ride a bike that doesn't weigh 200 pounds. I'm spoiled, I know. My road bike weighs 23 pounds *snaps spandex*.

So, those dreams. In no particular order, I wanna:

1. Ride in as many Critical Mass rides as I can.

2. Ride in at least one NE Ohio Time Trial.

3. Ride in at least one bike tour.

4. Ride.

5. Ride.

6. Ride.

I don't expect to hit 1000 miles. Who knows if I could even do 100 this summer? Hopefully? I'm not setting any hard numbers. It doesn't matter how far or how fast you go, it's that you're OUTSIDE and you're doing SOMETHING and hopefully, it's fun. That's what I want to do, is put a little fun between my legs this summer.

Perverts.

Don't let it consume you.

I have negative thoughts, but it doesn't mean I believe in them or entertain them. I thought to myself how funny it is that years ago I would call off work for "mental health days" simply because I was being lazy. Now I have days off with nothing to do and I go stir crazy. Blah, blah...Taking life for granted...Yadda, yadda. Nope. But I got a chuckle. Those thoughts are present, and I could dwell on them and let them consume me, but I don't do that. Waste of time. Moving along...

I'm off work today, and spent most of the day resting (read: sleeping). I had back spasms this morning and my leg hurt some. I got a bit overzealous yesterday and unwrapped a rolled up area rug that had been leaning against the wall (vertically) waiting to be put in the dining room. I pushed the dining room table out of the way and once I unwrapped the rug (it was wrapped in plastic) I unrolled it. 

Did I mention I did this "secretly" when my husband was in the shower? Yeah. 

When he was done showering, he asked me why I did it. I know I shouldn't take on such things by myself - but I guess one of the things that bothers me the most is that I can't really do a lot of the things I used to, as far as helping around the house goes.

I feel bad that my husband takes on a lot more than he used to have to. He works so hard all day long and then comes home and works more. I don't feel like I'm contributing like I should be (or could be) and that bugs me - a lot. I used to be able to do dishes, dust, mop... All sorts of things. The mets in my bones sort of make it painful to stand in one place too long. If anything makes me feel bad/terrible, it's this. Once we have our dining room completely together I'm going to call the cleaning ladies I used to use at our old place and start to have them visit us again. They're wonderful women and they were always thorough and kind. 

I do know about Cleaning for a Cause - but I got put on a waiting list over a year ago and didn't hear anything back. Besides, I'm not looking for a handout - I'm looking for a clean house. Don't mistake, our house isn't dirty by any standard. I even joked that I wished it was, then I'd have something to do on my days off (I can push a Swiffer for 5-10 minutes at a time, after all)!! 

Anyway, if you're a cancer patient going through treatment and need some help around the house, check out Cleaning for a Cause. You may have better luck in your city than I did, and it seems like a really good idea. I'll stick with my ladies. 

This Thursday I give winter the finger and head down  to a warmer climate for the weekend. I don't really remember what warm weather feels like, so I thought it'd be a good idea if we went somewhere to remind ourselves. Hopefully I'll feel up to renting a bicycle to explore some, we'll see. I'm looking forward to sunshine and the smell of the ocean. 

Until next time!