Breathe Deep, Cleveland!

I've been talking off and on about hoping to have some sort of event in Cleveland to raise funds for lung cancer research. After nearly a year of planning, I'm happy to say that our dream has been realized, and that Cleveland will have a 5k Fun Walk/Run to raise awareness and funds for lung cancer research!!

The website is a GO! 

When: June 27th, 2015
Where: Edgewater Park

Event Page
Event Facebook Page
Event Twitter
My Donation Page

I know a lot of people are doing a lot of different fundraising things, but I ask you to send a dollar or two my way. My goal is steep - and if I meet it I'm going to go even higher. Lauren Hill has inspired me to raise as much as I can for lung cancer research. If you don't know of her story, click here. She has raised over one million dollars toward cancer research. If we're being honest, I want to do the same. If you know someone with deep pockets, send them to my donation page!

Honestly, though...I'd be happier if a lot of people donated a little - instead of one or two people donating a lot, but I'll take it all.

MOVING ON!

I had a weird dream last night. I blame pain medication.

I was abducted. I don't know if it was by humans or aliens, but they appeared to be human. They took me to a place that seemed to be some hippy-dippy "New Age" healing center. They gave me radiation therapy with gemstones that were unavailable to anyone else. I was told I could choose one person to give the knowledge to, and enough gemstones to start the process of developing more stones.

I chose my oncologist. When I returned home (I got the feeling I never left Earth but who knows - this was a dream after all) I was scanned and was cancer free. Cool, huh?

Anyway, I did a bad, bad thing yesterday. I didn't take my chemotherapy meds. Intentionally.

Why? I really didn't want to throw up this morning. The nausea medicine I was given to take in place of Zofran at night before Zykadia actually does work, about 75% of the time. The other 25% I'm very sick for 10-45 minutes. I take medicine to help me stop throwing up, and then I fall asleep. I'm not entirely sure, but I think I slept most of the day yesterday.

Yes, I'll take them tonight and again the next night and so on. But honestly, it's starting to affect my job a little bit. If it's working, I will pick this treatment over my schedule - barfing or no barfing.

I'm a little afraid to be weighed again. I feel like I at least get one good meal in a day - with some snacking here and there... But sometimes I don't. Lots of times, it's completely my fault. I have frozen fruit in my freezer. I could make smoothies. My goal is to work on that.

Hey, sleepyhead!

This is me, lately. I have been wiped out, and have really enjoyed naps and sleep. This weather hasn't been kind to me, to be honest. My chest tightens and I ache. I walk slower. Foolishly I went out on Sunday without taking any pain medication (my stomach hurt that morning and I didn't want to chance it) and ended up pretty sore after only walking around a store for 20 minutes.

I went home and took pain medication and took a nap for a couple hours. Much better.

Tonight, I have water aerobics and I'm just coming off of a three day stint of feeling absolutely crappy (nausea, etc...) and I still don't feel entirely right so I kind of  just want to take it easy. I really can't tell if this is laziness, or my body just telling me to slow down and take it easy. The idea of running to a car soaking wet from swimming doesn't appeal to me right now - but staying warm in my house, does. This is common sense, right?

Getting out of the pool is a little tricky (mets in leg) so I think I'm dreading that as well. They're tearing down the pool this summer and will have a new pool in a year or so (complete with steps instead of an old "ladder" that is really cement/tile that is built into the wall).

I think for now, I will listen to my body. I feel a need to be home, cuddled and comfortable right now. I will have my days in the sun.

Update, kinda?

We have chemo. It's been such a weird weekend that I truthfully had to go back and see what I'd written about last. What did I do this weekend? Let's see... Oh yeah.

Spoiler Alert: Boo didn't have Oxycodone.

I got a new (but old) prescription filled for Oxycodone on Tuesday. I say old, because I was prescribed Oxycodone when I was first diagnosed and I barely used it. It expired, and I essentially took it back to the pharmacy where I originally got it so they could safely dispose of it. I didn't like Oxycodone, and in lots of ways - I still don't. The pain I was having was immense, however... And this does the job.

Caremark dropped the ball and I had to wait an extra day for their special order pharmacy to deliver my chemotherapy. I didn't get to start it until Saturday night. I take five capsules once a day, at the same time each day (on an empty stomach).

Actual size* of one Zykadia capsule (*lie)

I woke up Sunday morning and didn't feel too bad. My appetite hasn't been spectacular for a while now, so there wasn't a real change. I felt like I needed less pain medication on Sunday, but still took some. I woke up this morning pretty ill, though - as in sudden onset. My husband had a morning meeting so I asked if he'd swing back and get me a little later so I could get my nausea/vomiting under control.

I relaxed some and even fell asleep, and when I woke he was calling me to ask if I wanted to be picked up. My boss also asked me to make sure I felt well enough to work. I thought about it and still didn't feel right, but could have dealt with it. Then I realized there's a portion of my shift where I would not be able to quickly access a bathroom should I need it, and decided to give myself another day to adjust to the medication. More sleep. Sleep has been nice. I kind of wish I could do it more.

So that's it for now, just hanging in there. I'm sort of tired of winter, I'm sure Boston is more than I am. Can I have sunshine now, please?

I am trying not to post on Facebook much. I realize it probably looks like whining/complaining so I've been hiding from social media overall. I'm pretty happy. I wish I wanted to eat more, but I'm hoping that gets better soon. I wish marijuana was legal in Ohio - I'd love to try some High-CBD edible (low psychoactive - I have had Marinol and I haaaaaaaaated it). Get your heads out of your asses, Ohio. Weed could actually help some people.

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!

♬ Come with me, and you'll be, in a world of cancer fascination...♬

Part of what fascinates me about cancer is how it finds creative ways to try and kill you.

For me, it started with a huge blood clot in my calf (deep vein thrombosis). I very nearly shrugged it off as pains from being the Magnificent Cycling Goddess™ that I once was.

We got massages at the end of the first day of a 150 mile bicycle tour in August of 2013, and a friend bragged that he had a masseuse that made it "hurt so good" and I was jealous. I had a lady who wanted to anoint me with oils while she tenderly stroked my arms and legs. I felt cheated. Had someone really gone to town on that leg, something really bad could have happened.

That September, it tried to kill me by flooding my pleura with 3 liters of fluid.

November, it filled my pericardium with fluid. I was in the hospital a very long time.

Maybe it weirds you out that I find this fascinating, but I do. I didn't do anything to cause my cancer that I know of, but something in my body decided it should make those cells and "divide and conquer" my body.

Why'd you do that?

It's weird, right? Sometimes people are more prone to cancer because of their genes, but not in my case. Not in a lot of cases, really. Smoking increases your risk factor for cancer, but think of all the people that smoke for years upon years that never get lung cancer. I have been pushing for my parents to stop smoking for a while now - my Dad has COPD and emphysema and still smokes a lot. 

I know what it feels like to not be able to breathe. I remember getting exhausted walking from my driveway to my old apartment, it's terrible - it HURTS. I don't hold it against them, I understand there's a chemical addiction, and that their brain receives some signal that tells them "Yeah, this feels GREAT!" when they smoke.  I just wish they wouldn't do it. 

It's not like the flu or some other virus or a bacteria. Fun fact? You can simply exist, and get cancer. 

Tell your friends!

Which, by the way - I'm terrified of getting the flu. Yes, I got a flu shot like everyone should... But the main strain of flu that's floating around isn't covered by the most recent vaccine. Well, that's just FANTASTIC - coupled with the fact that I work in an office where there are plenty of hygenically-challenged people coming in. I should buy stock in Bath and Body Works hand sanitizers. It is always amusing to talk to a candidate when I have a face mask on, though.

Wait, why are you running away? Stop!!

I don't always wear one, but when someone comes in and appears to be particularly sniffly/coughing or snotty, it's on. 

I had the ick this weekend after chemotherapy. I started the second cycle of the clinical trial I'm on. I was okay on Saturday for the most part, but got very cold (nope, no fever - in fact my temp was 95.8 on two different thermometers) and sicky. My main issue with vomiting/nausea is that sometimes I can't tell the difference between imminent barfing and "hey, you should probably eat some chicken or something". I felt kind of off this morning and decided to stick to baby cereal but the ick didn't go away so I chanced it and ate some chicken adobo. Guess who feels a little better now?  

One guess. 

Who knows what tomorrow will bring. 

Les Symptômes Terribles

Ah, la vache!

Pour mon déjeuner, pêches tendues et du porridge de riz. Très sophistiquée, non?

Oui, non.

Yesterday I was pretty sick in the morning, which left me very hungry in the afternoon yet too gun-shy to actually eat anything, which made me feel even worse... Nausea and appetite loss really suck.

I got home from work and cooked up a steak in our cast iron skillet and wolfed it down. No issues, and I felt much better, for a while. I cooked dinner a few hours later but wasn't hungry. Part of that was likely because I had eaten just a few hours before, most of it was that I just didn't feel that great.

I decided to go to bed a little after that, and rest for awhile. I took Benadryl to help me sleep. One of our cats accidentally scratched me as I was playing with her, and I had a total meltdown. Yes, she drew blood and it hurt - but I was completely sobbing. I know it wasn't just because I had a cat scratch - I've had many "scratches" in the past years that have left me scarred and sore. This was minor, but I think I'd just had it. I'd been doing so well for a few days, it was defeating to have a crap day in the middle of nowhere. I'm over it now, for the most part - but the fact that I still feel weak and a little fragile is upsetting. I did quite a bit more walking (briskly, yay!) than I have in a while, and my hip and joints are suffering some, as a result. I'm waiting anxiously for my city to release the winter schedule for water aerobics so I can start that up again.

Today I managed to eat a bowl of cereal and not get sick, but I still didn't feel right. My head sort of hurts, and I'm (of course) tired. I brought leftovers from yesterday's dinner - locally made pierogi with sauerkraut and sauteed onions (yummy, minus onions) but I've not been brave enough to eat them yet. Instead, I am eating rice cereal (for babies) and strained peaches. They're easy on the stomach, but not as protein enriched as my doctors would probably like.

I got lab results back (at least, they were finally posted so I can access them). My hemoglobin and red blood cells are a little low, just below the normal threshold - they were evidently okay enough to continue treatment without a blood transfusion, but we'll see what happens next week. Thankfully, I am off treatment this week, perhaps that will give me some time to recover.

I am hoping to feel normal tomorrow, since we're visiting with family for Christmas. I need this time of year. Not for presents or anything like that, but it's just so warm and nice. It's really hard to be sad or mad at Christmas.

We went to a basketball game last week, and that was so fun! I bought a shirt and was as giddy as a tourist about it (even though our team lost). I hope we get to go to another game soon.

Happy Holidays to all of my readers, friends and family. I couldn't fight this battle without you. Love and caring are great medicines.

Gripes

I really thought I skipped the aches and chills with this chemotherapy cycle, but I didn't. There's no sign of a fever, but the tiny hairs on my arms/legs feel like pins when they brush up against my bedsheets. It feels like I'm freezing, when in fact I'm wearing a sweater and pants (and socks!) while covered up in bed. It's kind of annoying, honestly.

I stayed home today because of the pain, and spent most of the day in bed with our cats. Tomorrow (I hope) will be better. In the meantime, I've taken pain meds and am relaxing in the living room.

So far, my appetite has been okay - I'm better off nibbling on things as the day goes on instead of having three meals. My husband made chili tonight and it was delicious - I think the spiciness really warmed me up. I feel less chilly now.

I really hate missing work, but I have to tell myself that this isn't the sniffles - it isn't some 24 hour "bug" that I have... It's a serious illness and I need to take care of myself. As obvious as that probably sounds, it's so hard to accept sometimes. I hope the chills stay away tomorrow.

I'm a foodie, HONEST! Pass the Lunchables.

Hook. Me. Up. 

Before I started IV chemotherapy I considered myself quite the foodie. I still do, really. It's just... None of that foodie stuff sounds good as of late, and even if it did - I'd be afraid to spend the money on something that will only repulse me 15 minutes later. 

Sorry, chefs.

My husband and I went to a barbecue joint sometime after the first chemo cycle started and I ordered a pulled pork sandwich. I know this place is good, I was looking forward to it. When the food came, I just...Couldn't. I picked at the fries and poked at the sandwich but never actually took a bite. We'd gotten to know the server a little by this point (it was our second visit, I think - and it's a local joint) so when he came to check on us and I hadn't had a bite, he looked concerned. I wasn't going to bring up cancer or chemotherapy, but I felt I owed him an explanation for not eating what was very likely amazing food (we can smell their smoker from our house, it's such a tease). So, I told him that I had just started chemotherapy and I apologized. He understood, said some encouraging words...And my husband got a pulled pork sandwich to take for lunch the next day. 

Some people have described things having a metallic taste, and the only thing that's happened for me with is plain water. Food either just doesn't sound good, or becomes completely disgusting 1/3rd of the way through whatever it is I'm eating. I was warned by nurses not to eat things I like when I feel this way, because it will ruin that meal/food forever. As of now, I'm ruined on Chipotle and Dewey's Pizza. Sorry. 

I presently love the orange chicken my husband makes. I haven't gotten tired of it, so far. I know this is a huge risk, but it's probably one of the few things that I'd still consider to be foodie-esque (I know that's not a real word) that I will eat. If he asks me if I'd want to have it for dinner, I will always say yes. 

Guess what I'm having for dinner tonight? Orange chicken. 

My birthday is coming up, and if I could really have anything in the world, it would be Toll House cookies from my mom, and fried chicken with mashed potatoes and corn (and dinner rolls) made by my dad.  Not pre-made and driven up here, either. I want them to come to our house. I know they can't, but that's what I'd want if I could have anything to eat that I wanted on my birthday. 

This is day 2 after chemotherapy, and I feel okay. I'm tired, and I'm a little stiff. My leg is pretty painful, but the heating pad helps. I stubbornly avoided pain medication today - partially because I couldn't remember if I actually took it. I'm employing the pill case again, don't worry. I'm in good spirits and have had a great day, overall. My husband ran errands and brought home BBQ brisket sandwiches from another local favorite, Mister Brisket. No frills, it was what it was. Delicious. We ate on our balcony/porch, but it was a little chilly. 

I'm on the last day of a three day course of steroids, and as much as I hate them, they've actually helped my appetite, I think. Also instead of Zofran in my pre-meds, I had something called Emend, a long acting anti-nausea/emetic. I like it. I can't take Zofran until tomorrow night because of it, but have been cleared for Compazine or Xanax (evidently that also helps nausea) if I need it. So far, so good. 

There's the chalk festival going on this weekend, and I think we're going to try to make an appearance. Usually I plan out a drawing, but I haven't this year. I may fall back to one of my roses (though I usually chalk birds), because they're so fun and calming to draw. I hope my leg feels better - or I might worry about getting off the ground once I'm done chalking!

There's a bike ride planned for my birthday by my friends who run Slow Roll Cleveland and whether I can ride or not, I will be there. If they promise to make it not hilly, I'll ride as long as I'm able. I miss my bike. With the pain in my leg, my doctor has cleared me for biking so long as it's not strenuous. This is where a vacation to Columbus might do me some good. There's a trail along the river that isn't hilly at all (there are mild inclines, but none I'd really call hills, unless you're exiting the trail and then still - no big deal). 

Back to the food thing, though. I have a food blog I used to write in quite frequently - nowadays I don't know how much help I'd be if I wrote "Chef _______ makes a great foie burger. Tasted like vomit two bites in. Rest of my table assures me it's delish and must be my taste buds.". 

All I can say is, 

Toto, I've a feeling we're not in Seidman anymore.

The first couple of days after chemotherapy were like a terrible storm, for me. The nausea felt like it would never end, the fatigue just... Lingers. Food? You're funny. I never touch the stuff.

Zofran, please.

The storm clears a little after a couple days, for me. The one issue is this cycle, I'm also dealing with a pretty nasty upper respiratory infection that started as a sore throat - who knows where I got it. I was in the hospital 2.5 days last week because they thought I might have pneumonia - I don't.

Chemotherapy weakens your immune system, so there's certain things you're supposed to do (and not do). This weekend will be about 7-8 days away from when I had treatment, and that's usually when my "levels" (when I say this, I'm usually referring to my white blood cell count, and my red blood cell count.) are at their lowest. I'm supposed to avoid crowds and sick people. Did you read the entire list of things I linked? Yeah, chemo evidently turns people into antisocial, well-done meat eating veggie haters, or me anyway.

I cannot see, touch or smell raw meat cooking at this time - it's probably one of the grossest smelling things to me now. What do I like? Plain hamburgers from Wendy's, my husband's orange chicken, and ice cream.

- - - -

I wrote the above text a few days ago, when I seriously thought the end of the madness was coming. Nope, at least two more days of absolute discomfort from issues I don't really want to fully regale you with - combined with the nausea and lack of appetite from before.

Finally *knocks on wood* I am starting to feel a little more human. I now know the right combination of medicine to be as pain and vomit free without being looped out. Once the nasal congestion goes away (any time now would be GREAT) I'll probably only have to manage pain and the occasional nausea. I hope my appetite gets better, because I sincerely cannot imagine it getting any worse. I bought stuff to make creamed chipped beef, some of you might know that as "shit on a shingle" but that's not how we said it growing up. What was probably originally made by my grandmother as a cheap and easy way to stretch a 49 cent pack of dried beef and a loaf of bread is something I actually like from time to time. Yes, I know it's mostly butter, flour and milk - but lately I've been less about "How nutritious is this?" and more, "Is it food? It has calories, right? You can eat it? Eat it now."

I work one day (Sunday) this weekend. My husband is sick (same URI I had) so hopefully at some point we'll feel human enough to do something outside, maybe bike to the market.

I've tried staying positive these past couple of weeks and I'm presently just "staying" - as in, I exist. I'm here. I will be positive again, just not now. Don't make me do it.

Down With The Sickness

Hey there.

I haven't posted much because there hasn't been much to say, really. We're 75% unpacked in our new apartment and we absolutely LOVE the new place. I can't wait till it's all put together, it will be great. If I feel  up to it, I may hang curtains tonight.

I've been fighting fevers at night for the past two days, last night getting up to 100.4. We called the after hours doctor, but they never called us back. This is the second time I've left a message there and not been called back. I'm trying not to be angry about it - my own oncologist called me back this morning and spoke to me, so that's good.

I have an infection, and they're giving me Cipro to take care of it. That explains the fevers and general malaise. I still have achy legs from time to time, but have been biking to work and it seems that during the rides I am without pain (what better reason to ride more?). I stick my phone on the outside of my mesh pannier and put music on. It makes the ride a little more fun but it's not loud enough - maybe I'll get a bike speaker  - hey.. that one is also a headlight and it has a siren. I know what my next purchase will be...

n+1

Kidding - that's totally not the life for me. I do remember a few months ago when I said I'd buy a new bike once I beat cancer... I felt so close to the "end" back then - only to be told about the brain mets a little later. What a drag. I'm still going to buy myself a bike when this is all over... It's just going to be a much nicer bike than I'd originally planned on.

My appetite has been terrible lately. Today I basically made myself eat a muffin from Einstein's, and I drank a Boost. I think I'm actually hungry now, but I'm honestly not sure. I could go home and look at food and just think, "Nope." and not eat.

It's not that I don't know I should, or that I really need to eat something - I'm just not interested. Boost/Ensure is wonderful stuff for these sorts of situations, but they're no replacement for a nice hamburger! I wish that strawberries were still in season, I'd like to think I would eat those all the time.

Next week, I get a little break before the next round. I'm going to be able to relax some, and (hopefully) forget about what ails me, if only for a little while. Hopefully the leg cramps have fully stopped by next week. I'm down to about one cramp a night, and I've actually been able to sleep till 7 in the morning. It feels like sleeping in, though I know it isn't.

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!

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.

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...

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!!)

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!

Musings of a 5:00AM Baker

I'm not even going to try and pretend like the past few days have been 100% sunshine, because they haven't. I haven't been sleeping, which translates to early morning baking/cooking and binge watching Say Yes to the Dress on Netflix. This morning's episode involves a young girl who is buying her dream wedding dress - she's in remission from Stage IV lung cancer. I am totally crying.

Extreme insomnia started a few days ago when I woke up at 5:30 and proceeded to make a strawberry pie before I went to work. Saturday I was up at 4:00 in the morning. Today, I woke up at 3:00, but was able to nap on the couch (listening to Spotify on earbuds) for a little while. I woke up again at 5.

More Say Yes to the Dress.
More baking - a beer bread using a local (Westlake, Ohio) beer.
More frustration. 

I have some jam with your name on it, bread.

I have sleeping pills - Trazodone - which is actually an anti-depressant... I guess it's working because while I'm not sleeping very much, I'm not terribly sad about it. I think it's time to ask the doctor for something else. I have Ambien, but I don't like it, and I've said why before. I've actually got some Benadryl and a lot of sleep aids are actually antihistamines, so it's worth a shot. Some have also suggested melatonin.

My sister-in-law flew in yesterday and we had such a good time. We got brunch, and then went swimming in Lake Erie. I got a little sunburned (I have tried nearly EVERY sunscreen and there's really only been one that works so far) but I feel okay. I'm not on the chemotherapy at this time, but I still seem to be highly sensitive to the sun. To be fair, it's only been a week since I stopped so it's very likely it's still in my system. Either way, sunscreen is very important! A good friend of mine just bought this and it's cheaper than the other stuff, I've also read very good reviews for it, so I'm ordering it today.

Last night my mother and father-in-law and cousins went to dinner. The in-laws and my husband and I will be headed to brunch in a little while. I expect I will drink a lot of coffee. They're going home afterwards. I might try to sleep, then. I love my family so much - it means a great deal to me that they're here. I served them the strawberry pie I made, and it was a hit!!

My next radiation appointment is Tuesday!

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!!

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.