A lot on my plate...

Get it?

We started moving stuff into the new place yesterday. It was so great to be able to go in and check things out. Can you believe I never actually looked at the bathroom? No claw foot tub, but it'll do. I love all the storage space we have. We bought a new bed, too. We'll have a guest bedroom and a bed for that as well. It feels like we're living in a real house (we kind of are!).

I'm continuing to taper the steroids. Yesterday was probably one of the worst (waking) days I've had with side effects. My face actually felt swollen (it still does, sort of) and I actually had cramping everywhere. My fingers seized up as I was slicing... An avocado (Gasp! More avocado talk! My interest in them is waning somewhat, though). My back tensed if I twisted a certain way, and my legs cramped several times throughout the day, while they normally only happened at night, before.

I was able to sleep pretty peacefully last night, I didn't wake up at all with a cramp - and actually didn't even take any muscle relaxers or pain medication. I took magnesium and potassium (as directed by the oncologist) before bed, so perhaps that's actually helping!

When I was told that I would start Carboplatin/Avastin/Alimta tomorrow, the doctor and nurse both told me to "eat up" because my appetite would go away, most likely. Today, I got similar advice in an online support group I post in:

"That's quite the combo you've got coming your way. I'm sure I don't need to tell you but eat up and drink up in the days before."

So, there it is. Tonight I think we're having barbecue (there's a rib place just down the street from our new place) and I've insisted on ice cream afterwards (if I am still hungry).

Speaking of barbecue, I am now somewhat fascinated by this list of the supposed 30 best BBQ places (according to OpenTable, anyway). Some of them aren't that far away from me and I'd kind of like to go to some of them.

I want to share something that has been going on for a while now, ever since I started having muscle weakness and pain associated with the steroids, anyway. I've been riding my bike to work but have found that my legs cannot carry me up the 5% grade to my house as of late. When I try, my legs will stiffen and cramp - I almost fell off my bicycle when I couldn't bend my knee to continue pedaling. My husband has been taking me home from work, putting the bicycle in the car. As much as I hate to do this, and as much as I wish I could ride more - I take so much pleasure in being able to make the short trip to work. Since I'm feeling a little better, I hope to take longer trips through the neighborhood's mostly flat roads.

It's such a little ride, but it's mine to make. I'm glad cancer hasn't taken that from me, and I'm glad that my husband is there to make sure I get home safely.

Busy

It feels like I haven't written in a while, but I don't want to check how long it's been.

Today I taper even more off of the Dexamethasone, and am down to 2mg per day. My side effects are getting a little better, though I still wake up nightly with leg cramps. Clindamycin has helped the skin issues, somewhat. In addition to my legs getting cramps, my fingers sometimes lock up and ache. I'm trying to drink more water, but I really do not like water.

We're moving this week, today is the first day we can actually start moving things in to the new place. I'm a little sad to say we really haven't been packing much, and I haven't been much help. The lack of chemotherapy and the humid weather conditions have left me exhausted and short of breath. I am experiencing pain in my lung and liver area, but nothing constant or severe. I haven't been able to ride up the hill to our current (and future, for that matter) apartment in a couple of weeks because of muscle weakness, but I may try (On the hottest day in a while? Am I insane?) today.

Going through treatment and dealing with side effects has been a delicate balance of knowing my limitations and testing them. Sometimes you don't know if you can do something unless you try!

Chemotherapy starts Wednesday morning, and it can't get here fast enough. It is extremely frustrating to know that the spot on my liver grew exponentially in such a short time - all I want to do is kick this crap out of my body... Right now, I feel like I am doing absolutely nothing. I know that treatment is on the horizon, and that's why I'm excited and staying positive - but it's still frustrating.

Awkwaaaaard...

I have an app on my phone that will fairly accurately track the distance, speed and route of my bike rides. It has a countdown function so I can press start, and have a few seconds to get on my bike and get moving before it starts to count time and distance.

Today I had to restart the countdown a total of four times, because I could not get on my bike.

1st try: Leg cramped when swinging my leg over the frame.

2nd try: Got my leg over and was straddling the bike. Could not hop on the seat.

3rd try: Same.

4th try: Finally made it on, but not without a little discomfort (leg cramping).

I smiled the whole ride to work because I thought it was funny.

This is how I roll. 

I may need to drop the seat a tiny bit until the cramps in my legs go away. 

I'm working an extra day this week so I can have comp time to go to NY in August. I totally forgot until yesterday. Glad my boss reminded me!

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...

It goes to show you never can tell.

A lot of this blog content has involved my recently discovered brain metastases - but my primary cancer is lung. When I was first diagnosed, I sat despondent in my hospital bed and looked at the survival rates for lung cancer. I tossed my phone to the bed with the screen faced down as if that would make the statistics on the screen disappear from existence.

The truth of the matter is, lung cancer affects everyone differently. I've been lucky enough to carry on most of my daily routines - and even ride my bike some. I plan to start resistance training next week, and really do want to start riding my bike a little more. The humidity and heat make riding up hills kind of tiring (there's a 5% grade I have to ride up every day I bike from work).

I biked 150 miles only a couple weeks before I was diagnosed - looking at me then (and even now) you wouldn't be able to tell that I have cancer at all.

The Lung Cancer Alliance has a page called Faces of Lung Cancer where those who are fighting or who have fought their own battles with lung cancer are encouraged to post photos of themselves in hopes to end some of the stigmas associated with lung cancer (as of this post, I'm on page 2!).

The point is, you cannot look at someone and begin to understand the hardships they could be facing at that very moment. I smile, and am positive as often as I possibly can be - but with smiles and hope, there is an all too real illness that if left unchecked, would undoubtedly take my life.

Take a moment and look at some of the people on the Faces of Lung Cancer page. If you click on individual images, you can see the stories of the people who have posted their pictures there. It doesn't have to be lung cancer, though - lots of people fight all kinds of battles every day and you'd never know it because it's not necessarily on display.

My hair is doing this unruly fuzz thing, and I half expect it to start falling out soon (it could, as a side-effect of the radiation). If I had enough styling product and hair dye, I could seriously rock Anne Burrell's hair-do right now. I have that "I just stuck a fork in an outlet" look about me, right now. I'd post a picture but I'm rocking that fabulous "steroid skin" that I just love SO MUCH. 

Did I mention I can start tapering off the steroids on Monday? I know I did, I just have to say it again because I am SO HAPPY ABOUT IT. 

I'm editing this post to say that I did in fact just lose a chunk of hair. I'm not upset... It was just weird.

CyberKnife #3

Yeah, yeah. CyberKnife.

What's more important is... I had a NAP!!

I got to my appointment today at 11 and was told that there'd be a little bit of a delay, which was fine. I was falling asleep in the waiting room so my nurse actually asked me if I wanted to go lay down in a quiet area in a recliner - and that sounded so good! I didn't think I'd sleep at first, but they came back to get me at NOON and my nurse said I'd actually fallen asleep for a while.

I wrote the first part of this entry earlier in the afternoon. When I got home from work, I fell asleep again - and again after dinner for several hours! My only concern now is that it's a little past 1:00 in the morning and I'm due to be up in 4 hours for work. Strangely enough I'm starting to come to peace with my completely screwed up sleeping schedule. There have only been a couple of days where I've felt totally wiped out and thankfully, those have been on weekends. I woke up at 3:00 yesterday and managed to fall asleep for one hour on the couch before really waking up for work around 6.

I didn't have my own CD of music for CyberKnife again today. I'm not truthfully that upset by it, but listening to the music that other people have left behind from their treatments is a little weird in my mind. Lots of crooner music today, some of it kind of depressing. I sort of wondered why the person who left the CD chose the songs they did - if they put them in a melancholy or reflective state of mind... Or if it's just nostalgic music to them.

I still want to make a CD with science fiction music (I have already made a playlist on Spotify) and I'd love to leave it for someone else. I wonder what they'd think as they lay on the table, listening to the clicks and drone of the machine - all the while with the Star Trek: The Next Generation theme song in the background. Would they laugh (muffled of course, you can't even talk in that mask) or think it was completely weird that someone chose to have their treatment to that song? What if I followed it up with the Superman theme? I also considered having the theme from Rocky Horror Picture Show - not sure why except I do actually like that soundtrack.

The side effects are the same today, I'm tired (obviously!) and I have a little headache. I had a discussion with the nurse about the side effects from the steroids (skin issues and a little edema are the latest, but sleeplessness is a big one still) and she suggested that I take the second dose earlier in the day (2:00-ish instead of 5). I didn't have the pill bottle with me at work so I didn't get to try this today, but I will tomorrow.

One thing that's been happening the past day or so are TERRIBLE leg/feet cramps that aren't even in my calves. The top tendon of my feet and my ankles tense up so badly that my feet and toes curl upward and the pain is excruciating. It took several minutes of pained contortion/massaging of my feet (I tried standing up and placing my feet flat - OW) to get it to stop. It happened in the middle of the night last night and again this afternoon. I have been drinking Gatorade and water but know that I could always drink more. It's a horrible excuse, but water is so boring to me. I've been taking potassium, too. I brought it up to the nurse and we agreed again, that the dreaded Dexamethasone is likely to blame. It seems like such an innocuous drug to me, but I guess I'm wrong - it has wreaked more havoc on me than anything I've ever had to take before - and that includes chemotherapy (so far - keep in mind no IV yet and I know that's a whole new ballgame).

I suppose it's time to try and sleep again, I'm not sure how it will go. I had to take another Pepcid - I took one earlier but started to feel not so good again. There's a farmer's market happening Thursday on the campus of the hospital. I want to try and get there before or after treatment to see if they have strawberries. I know the season may be dwindling but I seriously want and need more! Yummy!

Roid Rage

Out of all the medicines I've had to take since I was diagnosed with cancer, I am at my wit's end with one in particular. I feel like a child whining about this, but the steroid I'm on (Dexamethasone) really sucks. There's a laundry list of side effects, the worst (for me) being acid reflux. When I was not on the study drug, I was told I could take Pepcid/Nexium or other things like that. Now that I'm back on the study, drugs like those are a no-go. I have to rely on Tums or some other chewable stuff that doesn't really work. I wake up at least twice a week with reflux so bad I can't get back to bed for at least an hour.

Now, I'm broken out like a leper - and I've plastered myself in calamine all over my shoulders and neck. Yes, this is also evidently a side effect. I hate it. I keep reminding myself that I had horrible headaches before I started this medicine, that in an evening they went away and I slept peacefully - but seriously? There's no end. I looked at one side effect list, and I basically have all of the "minor" side effects. Come on.

In better news, the port area seems to be healing. There's some tenderness, part of me thinks there's a little bit of suture stuck in there, but overall it's not terribly bad. I can feel it "settling" (if that makes any sense) and that's a little surreal.

It's been very hot here. We put the air conditioner in the window and now I don't want to leave the bedroom. That's fair, right?

Oh and if you were wondering, I'm still addicted to avocado. Maybe that's a side effect. Probably. I'll enjoy this sweet romance while it lasts.