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. 

There's no place like...

I'm prepping for a second berry pie right now, the bottom crust is in the oven, the berries are on the stovetop cooling, and the lattice top is unrolled and in the fridge still. I'll put it together and bake it soon.

I'm on my first vacation since I was diagnosed with cancer, and it's great! I've actually managed to sleep - a LOT - and have been feeling generally well rested. My husband participated in a triathlon on Monday and that was AWESOME! We're here for a little bit longer, then heading home.

I woke up this morning not feeling very well, though. Lots of knocking in my chest, nausea, and I was/am cold. I have obsessively (but discreetly - Hi Mom!) been taking my temperature all day and I've got no fever, but chills can be a part of chemotherapy. I took a Zofran and my other dailies and powered through it. Most food has looked awful to me all day long, and I managed to be nauseated most of the afternoon - but I'm okay. I ate enough, and the company I kept more than makes up for the icky stomach.

Next week will begin Cycle #2 of Carboplatin/Alimta/Avastin. This probably means that Sunday will be my worst (and whiny) day. I'm excited to beat the ever-loving shite out of my cancer, so naturally I am looking forward to next Friday.

I also miss my house, and my cats though. The knocking in my chest is (likely) my lung trying to open up more. My breathing is fine, and I've had no fevers since I finished the antibiotics for the unrelated infection last week. The sensation makes me cough, which makes me wheeze a little - and that always makes me nervous. That makes me want to run home, fast. In one particular coughing fit this afternoon I told my husband I wanted to go home, now. I don't feel that way now, but the anxiety still remains. Part of me is not comfortable with being as far away from my doctors/team as I am. My husband assures me that there are oncologists and a hospital nearby, but I don't know them and they don't know me.

The last time I spoke at length with a doctor who didn't know me, she told me I should be considering hospice (this was November, 2013). I was highly offended and her words sparked mental trauma I still fight with once in a while. That hospital stay was horrid, and traumatic in many ways. So while I'm somewhat comforted that there are medical professionals nearby if needed, I can't stop thinking of all the things they can (and probably would) say to me. I'm having a hard time thinking positive about that scenario.

There it is, just a little brain dump. I wouldn't be human if I didn't worry some.

I'm so glad to be where I am, though - and with my family. The combination of my surroundings and the people I'm with make this trip so very therapeutic. I wish I could stay longer - but also have the capability to teleport my doctors here if needed. The weather was dreary today and so I think that's part of the reason that *I* was dreary feeling. My family is pretty damn awesome, though. With them I can weather any storm.

Time to make that pie, now. If you're planning on heading over, it'll be done in an hour or so.

TTFN!

Someone saw my legs off, please.

Let me preface this by saying two things. First, be warned that I am going to whine throughout this entire post. Secondly, you should know that I HATE FAMILY GUY.

Hate is a strong word, and a strong word is required for how I feel about Family Guy. I hate it.

But, this is pretty much me - yesterday and today.

Yeah, it's totally like that. (PS: I still hate Family Guy)

The Dexamethasone can cause muscle cramps/weakness anyway - but it can be worse as you're tapering off the medicine. I'm drinking Gatorade, taking potassium and magnesium and still waking with leg cramps. In addition, I'm experiencing muscle weakness. I'm told this is normal - it's just annoying because for the past day or so now, I feel like I just shuffle along like an old lady (sorry to all the old ladies I know...I think you're adorable but when I imagine how I must look as I'm shuffling along in the grocery store yesterday, I totally picture you.)

I wish I could be so lively.

Sometimes I feel bad for not taking pain medication, but then I'd be slow and groggy. I don't like narcotics. I worry about Advil/Tylenol affecting my liver and kidneys (doctors have said moderation is fine). The truth is that I simply do not like pain medications. I take a Flexeril at night in hopes that the pain in my legs will be better, but it doesn't seem to be working. I'm tapering the steroid per doctor instructions, I just have to hope it gets better as I continue to taper - and manage the pain as best as I can with, I don't know... Bananas?

To end on a positive note, there are lots of charity bike rides happening very soon for cancer research. One is Cleveland Clinic's VeloSano ride (this weekend), the Pan Ohio Hope Ride (end of the month) and Pelotonia (mid-August). Though every person has their own reason for doing the ride, I'm personally thankful for all of the people who are hopping on their bikes and hammering out some miles for a great cause.

Coming up next blog...

Limited Edition

Undergoing treatment comes with limitations.

There's a monthly (bike) ride happening tonight that I desperately want to participate in. I had CyberKnife yesterday, so I was curious about going on a bike ride tonight. I finally got a hold of my nurse in Radiation Oncology who feels it's probably not a good idea to go on longer rides right now. She asked if I was having any headache and I said yes (which is common, evidently). She didn't think being out in the sun was a good idea right now. The doctor feels it's a good idea to keep rides at a "leisurely pace" and under 10 miles round trip until radiation is complete and I can be evaluated (MRI and CT).

Unfortunately, the total distance for my ride tonight would be at a minimum 16, but likely around 20-22. It really bothers me to not be able to ride longer distances right now. I know I couldn't do a hammer ride or anything - but I feel like if I could go slow enough (10-12 MPH) I could easily bang out 20+ miles...

Bleh.

I'm going to buy some panniers for my hybrid bicycle and start exclusively biking to the store (weather permitting) so that I have that excuse to hop on my bike. I only live a mile away from my office, but the short ride to work in the morning has been liberating. I'm slightly afraid of riding up the hill, because the last time I did that was when I started having headaches - then they found the tumors in my brain.

I understand the reason for limitations, but in a way they make me feel like slightly less of a person sometimes.

Avocado

I had a pretty emotionally draining day, and little of it had to directly do with cancer. It wasn't all good, but I'm trying to focus on what actually went well. I ended up taking a Xanax, which I have to do at rare times when I can't manage my anxiety.

I participated in a phone call today where I was able to share my story with some local political and healthcare personnel, in hopes to bring a fundraising event for lung cancer to Cleveland. There's still a lot of work to do and more phone calls to make, but I made a start today and I feel very accomplished for my tiny feat.

My favorite farm, Rittman - will have their berries at the market in the morning. I have to get up early so I can get them to make a strawberry pie for my husband's birthday. Later on, we'll hit the Cleveland Flea and hopefully see some friends and family in the process.

My in-laws are coming to Cleveland to visit us tomorrow and I think we'll have dinner - I am not sure what else we'll do but it will be good to see them!

I titled my post "Avocado" because I'm currently obsessed with avocado. I had it on a burger last night, I ate it at the restaurant we went to last week and I may (or may not) have eaten more for lunch today. I know there'll be a time where I'll get sick of it eventually but for now I'm going to ride that yummy green wave.