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.

Get MOVING!

I know everyone has had an illness of some sort where it seems like it's never going to get better.

I've been experiencing CIPN or chemotherapy induced peripheral neuropathy for a few days now. It has made me slow and a little cranky, not going to lie. One leg has a perpetual "catch" in it, and my toes feel like blocks of ice in the morning. I really don't like to complain publicly (or at all) so I'll leave it at that, but it doesn't feel like it's ever going away.

One of the solutions is taking steroids, and as I am now almost entirely tapered off Dexamethasone, I don't know that I'm actually willing to go back on it, long term. I know that's stubborn, but it's not like I can't manage. If I felt like taking a steroid actually drastically improved my quality of life, I'd do it - but I'd end up with leg cramps and pain from the steroid, anyway.

We had a great date yesterday evening, I had a pretty good appetite and managed to eat some pretty tasty eel. It's called Una-ju or Unadon. Barbecued eel over rice. Delicious!!

Pretty close to what I had.
Source: Flickr

It's so important to keep moving, even if it's at a snail's pace - and keep DOING! It's so fun and liberating to go on a date and have a conversation in public at a restaurant. Making googly eyes at my husband from across the table still makes me smile - after almost eight years - I hope it never ever gets old! 

Do stuff, seriously. If you're a cancer patient (or someone just not feeling good) with a serious case of the ouches and mopes (like me, sort of) then go outside anyway, if you're able. Two days ago I just sat out on my front steps and BS'd with my mom on the phone for a half hour. I felt the sun on my face and the breeze, and it was awesome. 

I am so glad that many have said that I'm an inspiration to them, but it's times like these I don't feel like I deserve the designation. I've been so whiny lately I haven't really wanted to post a blog, because I knew I'd complain. The thing is, it's okay to be annoyed with the crazy stuff that chemotherapy and cancer do to you.

I want people to know about these things, because they're real and they happen to people and there is unpleasantness and a degree of suffering. I don't tell you about these things because I want you to feel bad for me, to me it's no different than you telling me how your day was. 

Today is moving day! (and I'm at work)

I'm anxious to go home (I have two of those now) and to see my family who has come in from out of town to help. We have a few friends pitching in as well and I'm glad, because there is a lot to do. We have a cleaning team going to the old place tomorrow and Tuesday, but I'm sure we'll both have plenty to do ourselves. I'm sleepy now, so it seems a nice cup of coffee is in order - maybe when I'm done at the office! 

Stuff & Things

I am going to think carefully before posting too much in the coming days, mostly because I'm afraid that this blog will become a sounding board for my various gripes/side effects of chemotherapy.

I woke up with one of the worst headaches I've had in a long time. I filled an ice bag up and secured it to my head using a scarf that my aunt sent me - I must have looked a little silly while I sat there eating breakfast. At least my cats don't judge me - and if they do I can't understand them, so it's okay. I actually held off taking anything for it, and the headache is mostly gone.

Right now, I don't feel bad - but I don't really feel good, either. I ended up taking Zofran earlier (anti-nausea) and am currently picking at my lunch. I ate several strawberries (how I wish they were in season longer, Driscoll's aren't that great!) and a few pretzels. I'm tired but not that tired... It's like I'm in a side effect limbo, I suppose.

The official "big" moving day is drawing near!! My husband has been taking little carloads of things over recently, and each time one of the other neighbors has come out and offered to help him. On the occasions that I have been with him when this happens, I feel a little sheepish for not having armloads of boxes, myself. Pinterest has been keeping me sane, because I get to sort of pretend that I'm shopping for items for our new place. It's fun, and gives me ideas for later. I definitely want to decorate and furnish the new place like it's a home (it is, after all) so I can keep all my ideas neatly in one spot!

I have a lot of friends that are riding in the Pan Ohio Hope Ride, which involves biking 328 miles across Ohio - all in the name of raising awareness about cancer. I hope to do the ride one of these days, maybe (realistically) in a year or so. I need to work on this stupid cancer first!!

Jeni's Ice Creams brought back their peach jam ice cream and I am ready and willing to sample it, for uh... Science!

When I left the hospital yesterday, it felt like we'd magically transported to September. I love the cooler weather, though it means beach trips would be kind of chilly. I've only been out to swim at the lake twice this year, and I definitely want to go more - but the cooler weather feels so nice, it makes me want to be outside more.

I won't bother reporting on my Decadron/Dexamethasone withdrawals, they exist - life goes on. 

Soup sounds delicious right now. Do you have a favorite recipe? I'm looking at French Onion soup (my husband just picked up sweet onions at the market) and Posole. Post a link to your favorite soup recipe in comments if you want!

Greetings, from infusion!

My internet connection isn't great, but I'm going to try and post a blog.

I've been at the cancer center since about 9:45 this morning (I had to meet with my oncologist) but the appointment to see her was super delayed and we didn't get in until 10:30 or so. She explained the chemotherapy medicines (Carboplatin/Avastin/Alimta) and possible side effects.

We also got information back from Foundation Medicine - there are two more things (mutations?) that were found in my biopsy. There are some clinical trials that involve those new mutations, but the information on them is very limited, and we do not feel it's a good idea to deviate from our current chemotherapy plan. It's very good to have this new information though, because should newer treatments or trials arise in the future, we know that I could be eligible for them.

It's about 1:45 now and I have not gotten my first chemo infusion yet. We had to wait on some labs to come back, and they're ordering medicines to take before I start infusions (anti-nausea I think). I have to ramp the steroids back up today - but only for a couple of days. I was told I'll get tired, but that most side effects (if I have any) will be in a few days, or when we're supposed to be moving stuff. I know nobody will judge me for not doing much/anything in the way of moving but I still feel bad about it.

We went to a BBQ place last night for dinner, it's about a 60 second walk from our new place. It was really good, and we got to have dinner with two of our friends. We picked up some hard candy and snacks on our way home. I bought some lemon drops and some Kind bars (those are yummy). The lemon drops are great!

They did come in to set up my first infusion (Avastin) a little while ago. This first one will take about an hour and a half. I'm about to eat a sandwich that my husband brought over. This infusion is slow, because they have to monitor my blood pressure closely. I'll post more later!

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...

Don't do it.

No, seriously. Don't shave your head - not for me. If you do, I'll have you committed (not really). 

But, we loves you!

Yeah, I know. But I got to thinking about this some after reading a Dear Prudie article on Slate the other day - where a person writing in asks if it's weird to want to shave her head to be in solidarity with her good friend who may end up losing her hair during chemotherapy so that she doesn't have to "do it alone". 

Here's what I think about it, honestly. Do what alone? When it comes to losing your hair with chemotherapy, if it's going to happen then it's going to happen. At least in my mind, it's far better that you exist - that you are my friend. Who honestly wants to lose their hair? Nobody, right? So why would you do that to yourself -on purpose- when you didn't even need to? I know. 

Consider this my formal plea to you, to not shave your head on my behalf. What can you do? Let me dust off an oldie but a goodie. 

5 Ways To Help A Friend With Cancer (via Huffington Post)

I really don't want you to shave your head. Seriously, you might look funny and you CHOSE to do it, so it's kind of on you. I (like Prudie suggests) don't want to see my bald or balding head in yours. Me and you? Any solidarity we have is because we're friends, or we're related by blood or because I married your son... There's a reason you are here. I'm touched that some of you want to shave your head - I am... But would you skip it, please? 

Bast Frands Forevar

Just be here for me. Pray for me. Eat a delicious brownie sundae for me. Do whatever awesome thing it is that you do, because it's important that we all keep being as awesome as we can, no matter the circumstances. Please, please don't shave your head for me. 

We good? Yeah, we good. Chemo starts next Wednesday, woo!

Things Change

I had a couple of scans yesterday (CT of the lung/pelvis & MRI of the brain). There was a bit of a scheduling/location nightmare and I ended up having a teensy meltdown (tears and all) but the folks at the hospital set things right.

Today we got the results of the CT, and they showed "significant" growth on the liver lesion (it went from 1cm to about 4cm) and growth in the lung. It actually kind of explains the pain and shortness of breath lately. I've also been ridiculously tired. I thought it was just the humidity

Because there was minor activity/growth on the liver while still on the clinical trial drug (though most areas were stable) and the growth was so significant after just 4-5 weeks... The oncologist felt that since I'm in fairly good health otherwise that it would be best to start IV chemotherapy next week.

I will be taking Carboplatin/Alimta/Avastin and each "cycle" of chemotherapy will be 3 weeks (one infusion during that time). I don't know how it'll affect me. I'm sad, but I'm not. This is a new treatment, this is a new chance to fight my cancer, and a new way to accessorize - am I right? I'm scarf shopping online, since it's possible I will lose even more (if not all of) my hair. The pre-tied wraps they have look terrible and are expensive, so I'm going to have to try and learn how to tie scarves creatively - or get a cute hat or two. Truthfully, I do not like most hats.

Right now I can barely stay awake. I would love to go home and take a little nap. Tonight, I think I'm going to try and get out of the house and have pizza with a friend. We'll see how I feel. Sometimes, I hate feeling like such a fuddy-duddy, sometimes I feel like a stick in the mud because I'm so damn tired. There's a reason I'm tired, and it's okay. I feel like I should get out of the house and do something fun this week - I might not feel like it at all come next week.

Weekend Recap

I've had a pretty busy and exciting weekend, I hardly know where to begin!

Unfortunately allergies or some annoying bug is in the air and I've been dealing with stuffy ears and throat for the past several days. Drinking a lot of fluids seems to help, though I keep forgetting to refrigerate my Gatorade, and that helps with the leg cramps that I get in the nighttime.

Friday I met with Beth from Lungevity, who came in from California to meet with me and a few other Cleveland area folks about putting on a fundraiser event in Cleveland in the late spring of 2015. We brainstormed and came up with some really good ideas. I'm excited to be a part of an event that will undoubtedly be fun, information and help raise funds for lung cancer research.

Saturday we went to the market and I got to test out my new sunscreen some more - it's called Sun Bum (SPF 30) and I wore it around noon, and again in the later afternoon sun (at the beach) and did not burn at all. I'd tried a few other things (Alba Mineral Sunscreen, SPF 30, Alba Hawaiian Sunscreen, SPF 45 and Coppertone Sport, SPF 50) and would burn without fail. So, looks like Sun Bum is the way to go for me!

We bought a sun shelter like this one (in fact it is this one) and brought it with us to the beach and it was fantastic. There was a lot of sand so it took some work to stake the umbrella, but it is amazing so far!

I realize that a lot of this post sounds like I'm a shill for sun care products, but I'm not!

I have scans today, which I think are part of the protocol for the clinical trial I'm in (MRI & CT). They'll also be accessing my port for a blood draw which is super weird (it doesn't hurt me, but the *snap* sound as the needle/thing hooks in is sort of weird and makes me feel a bit inhuman...). I'm pretty tired, but I think that has to do with the humidity and heat. We should have a reprieve from both starting tomorrow, for a day or so anyway.

I'm on the lookout for grocery panniers or other bags that will attach to my bicycle. I don't mind riding of course, but having a bag on my back (especially where the cross-strap hits right on my port) is annoying, especially on uphill treks. I've gotten a few suggestions and am mulling them over now. If anyone has any more ideas, I'm open to suggestion! When we move, we'll be easy biking distance to the grocery store. I don't want to have to drive to the grocery (at all, if we can help it) so they'll be useful then too!

As I briefly touched on in my last post, my hair has fallen out some. It's weird, if nothing else!! A good friend of mine was kind enough to give me a trim so it looks and feels a bit less obvious that I have bald patches. It feels nice! I'm completely okay with losing my hair - I may get some scarves or even a wig at some point (we'll see what happens with future treatments) but it's okay. It's only hair. It will grow back. 

I'm looking at a website that lists all of the cool stuff that goes on in our new neighborhood. There's so much fun stuff nearby, I'm excited! 

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.

Seis Cuchillos de Cyber

Fun fact: 6 is the smallest positive integer which is neither a square number nor a prime number.

NOT CyberKnife.

6 is also the number of CyberKnife treatment sessions I have completed. To review, the first session was to target all small tumors except the one in the mid-brain. The following 5 treatments were for the mid-brain tumor, which required lower doses of radiation.

Today, I am more tired than I can recall being in quite some time. I was told there'd be some blood drawn (I had a voice mail from my oncologist's nurse) but when I walked all the way to the place where they do draws for port people... Nothing. No orders on file. So, I head toward work. I work very close to where I have treatments (this is actually a wonderful thing) but the walk might as well have been ten miles today.

We're going out to celebrate tonight, barring any serious energy meltdown - we found a barbecue place outside of town and for some reason that just sounds really good to me. The 30+ minute drive to get there? Eh. I'll have to think about it.

The Radiation Oncologist said that the effects of the radiation are cumulative, and that includes side effects. So, the fatigue and any other fun stuff that might come along because of radiation should be in full force, and I believe it! I got the good news that I will be able to start scaling back the dosage on the steroid starting on Monday. I'll reduce the dose by half for a week, reduce it by a half again, and again... Until I'm taking 2mg every other day (I think).

I cannot believe I chose to work today. Had I known that the last session would make me so tired, I would have asked for the day off and I would have chosen to do absolutely NOTHING except lay around in the one room in our apartment that is air-conditioned. I feel very grateful however, that I have been well enough to work my shifts without problems.

Three cheers for being done with CyberKnife treatments!! (and, I got to keep my mask!!)

Insane in the Mid-Brain

It actually turns out that I have a total of six (6) CyberKnife sessions, and that today was NOT my last (as I'd thought). The first session targeted all areas of the brain affected by tumors except the mid-brain (10 tumors in all, including little "seeds".). The subsequent 5 are all to target the mid-brain tumor with lower doses of radiation. My medical staff felt that a single, heavy dose of radiation to the mid-brain would actually put me at a higher risk for permanent cognitive damage, so that's why it's spread out.

Count the birdies!

This is part of a back-lit mural on the ceiling above where I am when I'm receiving treatment. In reality there is a third panel to the right of the two you see. It's a lovely little panorama that reminds me of the canals of Tortuguero, Costa Rica. When I started treatments, I would count the parrots, and then the white birds, and then the (howler?) monkeys in the trees. It gets a little difficult to count them, because you can't move your head. During last week's second session, I noticed something.

What is going on with THAT bird? 

He's had an accident! That poor bird has collided with the metal strip piecing the mural together and he's presently in a world of hurt. Seriously, does it not look like he's just faceplanted? Now, before the treatments start I always look for "Faceplant Bird" and I have a muffled little chuckle (because of the mask, you see).

I've been sleeping a lot - taking naps during the day and falling asleep early and for longer periods of time. I have not had to rely on sleeping pills, but I did start taking Melatonin. I've also taken Flexeril (a prescription muscle relaxer) before bed for two days in a row now - the first night I slept continuously with zero leg cramps... Last night/this morning I woke up with leg cramps, so the actual correlation between Flexeril and no leg cramps is inconclusive at best (for now).

Real talk now?

I miss taking chemotherapy. My breathing has not been... As fantastic lately. They do monitor my O2 saturation while I'm having radiation and there's been no cause for alarm, it's in normal parameters for a healthy person - but I notice that it's harder to breathe after going up stairs now. It's a little harder to breathe at the end of a bike ride. It really could be due to humidity (I do notice it more when it's hot out, or muggy feeling) or the fact that I'm just stressed out about it. It could be allergies - but I've been off the chemotherapy drug for a couple of weeks now and I really wish I was back on it. They want to assess me in a week or so (with an MRI and CT) to see what, if anything the radiation has done to my head. At that point, they'll likely decide whether I should remain on the trial or continue on to traditional IV chemotherapy. They could also be hoping for results from the liver biopsy - maybe Foundation Medical was able to use a sample and they'll have something to say. All I can say is, hooray for anti-anxiety medicine.

See you Wednesday, Faceplant-Bird - I'm going to celebrate when my last appointment is done.

CyberKnife Episode IV - A New Zap

Today's music will be brought to me by Star Wars. We're even going to put the 20th Century Fox intro on the first track, I think it would be amusing if it played as the heavy lead door to the room was closing slowly - but that will probably not happen.

We looked at some apartments yesterday  and I feel that we're very close to finding something GREAT! I do not want to reveal too much because I'm mildly superstitious about it, but I've got my fingers crossed. As of now, it's all I can think about.

I e-mailed my nurse about the leg cramps I've been having - I know I've spoken about them before but they're increasing in frequency and pain level, and they mostly happen at night. Sleeping has been a little better, I'm crediting melatonin and the fact that I took the steroid MUCH earlier in the day yesterday. I've also been trying to nap/sleep more, and that's been beneficial.

I have to remember to do things for myself, to be good to myself. To not be a hero (two nurses have told me that).

Sometimes, I actually do forget that I'm battling a serious illness. It's hard to explain - because I'm reminded somehow every day that I have cancer. Maybe I'm used to cancer? That's weird, isn't it? The only thing that reminds me from time to time that I'm actually not well is when fatigue hits me, or I see/feel one of my scars (my port, for one). I guess in a way, it helps me to remain positive. I'm not in denial - in fact I do a lot to make sure that others know about cancer. I want people to know what my experiences are like, even if they're not pleasant.

I typed most of this before I actually had radiation. Today was a quick appointment, they seem to get faster once they're able to pinpoint the places they need to go. From setup to completion, it generally takes about 30-40 minutes now. Fatigue has hit me, now. My husband brought me a healthy wrap (pita with cabbage and other veggies and chicken) and a yummy mango lemonade after treatment. It was good to have something delicious.

Now, I'm very tired. I've been biking to and from work on most days, but generally find that it's difficult to ride after radiation treatment, so I don't. One more appointment to go!

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!