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.)

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!

CyberKnife 2 : Radiation Boogaloo

Today's CyberKnife music was brought to me by the Mamas and the Papas, for the most part. I have the choice to bring in CDs if I want to, but we've had some mishaps with burning music so I've relied on what they have. Hopefully I will have my own sweet jams for session three.

Initially the treatment seemed to take more out of me. I felt dizzy and a little disoriented - more than before... But maybe my head was just squished a little too much in the mask. I felt and still feel a little more lethargic today. I ate lunch when I got back to work and feel a little better.

I'll be happy when I can lay down and rest, to be honest.

The session didn't last as long, but I was still there receiving treatment for 30-45 minutes. It's not so bad - again the mask is a little surreal and it wasn't on tightly enough at first so when they were setting me up, they had to come in the room and re-adjust me so I was nice and immobile.

There's an oncology social worker that visits me from time to time, and she stopped the room where I was waiting and brought me a card/brochure for art therapy - I can decorate my radiation mask when I'm done.

Art is very important to me, it always has been in a way - I had a job a few years back where I'd bring pens and markers to work to doodle - and eventually my boss took my art supplies from me... That only made me more creative and defiant.

I'm looking to get back into some sort of exercise program. Hopefully I'll be able to lift weights some, but I think I'll be doing it at a significantly lower intensity than before. I'm thinking more about trying yoga, and seeing if I can find water aerobics in my area (the class in the winter was unreliable due to weather and other issues, I'm guessing). I don't feel as fast or as strong right now, but I've got to keep moving.

We did find strawberries yesterday. They're delicious - I had some with breakfast and lunch!!

Radioactive

Today was the setup appointment for my CyberKnife sessions. I was told it would be a full day, but ended up leaving the hospital after only 3-4 hours. I met the nurse who I'd usually be dealing with on treatment days (she's wonderful) and we talked about the schedule. Treatment sessions will last about two hours each - there is a stereo in the chamber and I was told I can bring in any CDs I want. Time to make some mixtapes!

I got fitted for my mask, and had a CT scan and MRI. They do these scans at a finer detail to make sure they don't miss any little tumor "seeds" that they can target during sessions. The mask wasn't bad, the MRI was annoying... You do what you have to do. You carry on, or you don't. Those are the options, and I choose to carry on!

It was established that sessions would begin in July - but I've since gotten a phone call and radiation begins next Tuesday. I will likely have two consecutive sessions next week, two more the following week and then a fifth the following week. It's not exactly jam-packed. During radiation therapy, I will not take chemotherapy medication. I will not resume it for three days after radiation ends.

All in all, today wasn't that stressful but I'm still pretty tired. The weather decided to warm up and even our ground floor apartment isn't impervious to 90 degree heat and the humidity. It's gross, I feel slow and exhausted. I'm doing laundry (don't worry, I am not lifting anything heavy) and then plan to take an extremely cold shower.

I'm curious about how radiation will affect me. Most things I read say that side effects with CyberKnife are minimal and don't usually show up for weeks (as the tumors start to dissolve/die) if at all. I'm anxious for business as usual.