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. 

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.

Just an ordinary day...For once.

I almost don't want to jinx this, but this is probably the best couple of days following chemotherapy I've had during this trial.

On the evening after treatment I normally have aching legs that feel like growing pains (remember those?). Friday night? No aching at all. The following days usually have me sluggish and nauseated, and I've had none of that. In fact, I spent a good portion of the afternoon straightening up my house. I went shopping in the evening and walked a lot...Without pain. I woke up this morning feeling fine, and ate a normal breakfast with no nausea.

I've had some headaches lately and was actually a little worried, but I finally got to opening the nasal spray the doctor prescribed (because I'd been complaining of a runny nose) and it works. I feel MUCH better. Some of you already know this, but I can be a little stubborn with meds. I've had more than one nurse give me the "don't be a hero" speech.

I got some curtains hung in our "office" room (with the help of my mother), and that seems to be helping a lot with the draftiness. I have curtains to hang and will recruit my husband to help with those - probably not today because, football.

I commented to my mom and husband yesterday that for the first time in a while, I didn't feel like I was sick - almost like I don't have cancer at all. I highly doubt that such a miracle has occurred, but it's a good feeling. Don't worry, I'm fully aware of my illness and don't foresee any future meltdowns the next time I have a twinge of pain or if I throw up. I know. 

I got an Amazon Fire Stick for Christmas, and it's really cool! We have a Playstation in the living room to watch Netflix and other things on, but the television in the bedroom doesn't have anything like that. #firstworldproblems

Anyway, now we can watch videos/movies on Amazon Video, Netflix and a bunch of other stuff in the bedroom. I really wanted to have it for the days I feel bad and need to rest. It's really great though! I've tested it out a few times and it was super easy to set up. I promise I'm not a shill for Amazon, I just really like it. 

I explained to one of the doctors on my team that I've been doing strength training. She seemed concerned and insisted that I don't do things like lunges and squats (I don't). I explained that I have been using resistance bands and I even use an exercise ball for crunches (are you having déjà vu yet?). Water aerobics start tomorrow night, so I'm really excited for that. 

My mom just left to go back home, and so it looks like it might just end up being a lazy day for me. I have never ventured into the basement to do laundry, maybe I'll do that.

Health is everything, when it's in stock.

I've been sick most days (but not today, woo!) and I almost entirely blame it on a certain pharmacy that I'll just refer to as Voldemort (in other words, I shall not name them).

Wheehee! I fill prescriptions!

I called them on the the 30th (of December) and asked for a refill for an anti-emetic I have. At the time, I still had 7 pills. They said it wouldn't be immediate because of the holiday, but that the prescription would be filled on Friday. I got a phone call shortly after my treatment on Friday from Voldemort and they said it would be Monday. Frustrating, but okay. My nausea is usually worst the few days after treatment happens, and I was running out of my medicine. We went Monday night to fill the prescription and they still didn't have it. Voldemort said it'd probably be Tuesday or Wednesday.

Guess who didn't have the prescription Wednesday night?

My bad.

Almost every day since I have had treatment, I've thrown up. I have other things which I've been told can act as an anti-nausea/emetic but they take a while to work. Not good in my situation, where I don't start to feel crappy until right before I get sick. 

I work in a small office with one other person, usually a student. In these cases, I am in charge - the assistant I was with yesterday was new and wouldn't have been able to be left alone. I started to feel sick, so I excused myself. I came back, watery eyed and chilled, only to have to leave again 5 minutes later. I panicked, to say the least. My hands were clammy and I was trembling, I didn't know what to do. What if this didn't stop? I didn't tell my assistant I was ill, that's a weird hangup of mine. I don't particularly like to announce that I'm nauseated and will probably have to run out of the room at any second to toss my cookies. 

#breakfastFAIL

I went back and sat down with a cup of water, and proceeded to get very, VERY sleepy. I couldn't keep my eyes open, and all I wanted to do was sleep. Either my assistant was oblivious or very polite. In either case, I was grateful. I decided I should probably eat, and warmed up the diced steak and ramen noodles I'd brough. By the time I had a few bites, I was awake and alert and actually felt pretty good. I made it through the rest of my day with no troubles.

It's Thursday and I still have no medication. I transferred the prescription to another (competing) pharmacy. Voldemort was not apologetic in the least. Whatever, Voldemort. 

The good news is that I started lifting weights again. If you're a cancer patient and miss physical activity, check with your doctors. The consensus at this point is that I can exercise "as tolerated". Because there are metastases in my hip, some exercises I used to do are pretty painful. You can modify things, though.

Instead of sit-ups/crunches on the floor, I do them on an exercise ball with a medicine ball in my hands. 

That way, my pelvis isn't on a hard surface. It takes the pressure off but still lets me get some core training in. When I'm stronger this will be helpful (for you know, biking eventually). 

I use resistance bands for both upper and lower body exercises. I don't have to have a metal bar or heavy weights to contend with in case my strength fails me. One example is a chest press that looks like this:

Again, no barbells. My gym has bands with varying degrees of resistance - you can still get a pretty intense workout! It's good to push yourself, but know your body. You will know what's too much. I still do a bench press with the traditional bar because I'm stubborn and I prefer keeping proper form, which is harder to do with that exercise using resistance bands (for me, anyway). 

Having cancer doesn't necessarily mean an end to physical activity. Check with your doctor to see what he or she thinks you're capable of. I'm starting water aerobics soon, which is an impact-free way to get in some cardiovascular exercise. I used to think that water aerobics were for frail old ladies (sorry, old ladies) but it's actually pretty challenging! I did however manage to do a Zumba class. I only stepped out for one song. I was not in excruciating pain, but felt that I might suffer more soreness than I was willing to contend with had I stayed in the whole time. 

Treatment (Cycle 2, Session 2) is tomorrow. My mom will be here today, I'm happy about that. She takes the bus to see me and has no music to listen to, so I'm giving her an mp3 player when she gets here (loaded with music). 

Happy Thursday!

Hello, 2015!

In 2015 I resolve to kick cancer's ass.

I've felt pretty good lately, it's hard to believe that only a month ago I was having horrible leg and hip pains - it seems like it was yesterday when I was basically writhing in pain, begging my husband to make it stop (while I waited for my pain medication to kick in).

I had to take Tramadol every four hours. If I forgot, it was much harder to control the pain. I'd forget to take the medication, or avoid taking it because I hadn't had anything to eat and was afraid of throwing up, and by the end of my work day I'd hobble to the car while fighting back tears.

Today I take two Tramadol per day (morning and night) and it's more or less a maintenance thing for me. I've had days where I didn't take any at all, and I was okay. Monday, I took a Zumba class and only sat out one song because there were a lot of moves that put most of my weight on my gimpy left hip. I felt good and had some soreness afterwards (but who wouldn't after not attending an exercise class since the spring/summer?) that was easily controlled with OTC pain medication. Cold weather slows me down, and it's been very cold lately. The wind takes my breath away, and the cold makes my body ache. I sat in my living room this afternoon in a hoodie, hat and warm pajama pants.

I can sign up for water aerobics tomorrow, and the classes begin in the middle of this month. I'm excited to exercise again, I've dealt with a lot of pain in my recent past and it's prohibited me from exercising much. I need to get a set of resistance bands like these (I used to lift heavy before I found out about bone metastases) or just see if the gym my husband has access to has them. I miss my bike and I miss weightlifting. I think I'd do far better if it was just a certain food I had to give up, rather than a cherished hobby like cycling.

So here's a question: If you had to, would you rather give up a food you really liked, or a hobby/activity you really enjoyed doing?

I hope everyone is having a great 2015, so far. My mom is here again (she comes up for treatments) and I made pork and sauerkraut for dinner. It's probably the best pork and kraut I've ever made - I switched up and actually used a recipe this time (I did not use shallots or onions) and didn't use beer. The small amount of vinegar really made the kraut tart and I loved that.

Cycle #2 of the clinical trial begins tomorrow. At the end of this cycle, I'll have a scan. It's weird, but I'm actually looking forward to scans (we'll see how I feel when it gets closer to the scan date!).

Oh no, they can't take that away from me.

It's about three miles from our new house to the office. How do I know? Well, I rode my bike to work today.

Despite having leg cramps all night long (please don't tell me to drink more water, I know!) my hips/pelvis weren't bothering me as much this morning so I thought it'd be a good idea to try a ride. Biking to work has pretty much zero climb (well, 112 feet but that might as well be nothing, over a few miles). It was actually chilly! I coughed a few times (which actually feels kind of good) but it went well.

I think what helped me be able to ride is the Flexeril I took last night, honestly. I started to get stiff and have pain about two hours after I got to work. I hope I can take it during waking hours, it'd be nice to have less pain/be pain free during the day.

Muscle relaxers aren't doing much for the leg cramps, though. The only way I ever have zero is if I lay flat on my back and am propped up somewhat. The act of shifting in bed, or moving my legs at all usually triggers the cramps. I will address it at the doctor tomorrow, but I'm hoping that they completely go away once the steroid is completely out of my system. I am on my last week of taper, and only take it every other day now (2mg versus 8mg in the beginning).

We're still getting settled in the new place - there are boxes everywhere! It's wonderful to be in the new place. It's beautiful and homey and just such a neat (big!) place to live.

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.

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!!