Back in the saddle...Again!

I've been so lucky to have caught several days of good weather in the past couple of weeks! Miami Beach was wonderful (even on the "cold" day) and then we saw family in Columbus last weekend for St. Pat's, and then it was pretty decent back home for a day.

I got to go on a short bike ride yesterday, and that was good. It was the first time I'd been on my bike since last fall. It honestly felt a little weird. In Miami Beach I'd ridden a small step-through bike that seemed a lot lower to the ground. Honestly, my seat was probably too low. Anyway, it was weird - but it was good to ride again - even if the ride got cut short (long story!!).

Am I doing this correctly?

I've got my eye on a recumbent tricycle and I hope to test drive it very soon. Riding yesterday wasn't painful - just...weird. My biggest concern was lifting my leg over the seat and crossbar on the dismount. That's a tricky thing right now, and I was careful not to trip over my own bike or hurt my leg any more than it hurts.

My time on the bike was pretty good. I didn't feel any pain in my hips or legs. I did brake a little hard at my first stop light and that scared me. The seat post is a little high, but it can be fixed.

Meanwhile, I've been having some anxiety recently about my health. I'll have a scan in a little less than a month, but I'm fearful that the medicine I'm on isn't working. Xanax helps to allay this fear, which is good.

Since I got back from Florida I've had a bit of a cough (planes are vessels for disease, I know). I am out of breath after going up stairs while carrying something (could be attributable to a cold). I can take deep breaths, I can speak normally. I'm not wheezing, I'm not coughing up blood. I don't have a fever. Surprisingly, I wasn't particularly out of breath after riding my bike.

That, obviously... Is because bicycles are magical.

When I sit in a funny position, my leg hurts more (again, makes sense). Lots of this stuff is probably obvious, and my rational brain knows this.

Fire = HOT!

But my irrational brain thinks of course, that this is the pulmonocalypse and I'm deathly ill. In my defense, that's happened before. I will never not be afraid of things getting worse, or coming back, or spreading... No matter what happens. I could be disease free and would have a conniption if I ever felt short of breath. The fear will never go away.

I did get a new medicine to manage nausea that seems to work pretty well, most of the time. What usually ends up happening is that I'll wake up nauseated and then will be sick for an hour or so - during which time I take another medication (anti-emetic) which works but makes me sleepy. Cue me falling asleep on the bed with a constant stream of King of the Hill going on in the background. I can sleep through half a season, sometimes. Later on in the day I might feel human if I eat something. Steak usually does the trick, honestly. I have been known to eat a steak with nothing else - just to get the protein and calories. Also, steak rules.

One thing about Bristol Myers Squibb...They sure know how to cook a steak.

Tonight I'll attempt to eat some corned beef - it sounds good so that's definitely a start! With yesterday's dinner I was pickier than my Brother-in-Law... I got a sandwich at Melt and picked off most of the green stuff, took the shrimp off of the bread and just ate the shrimp. I may have eaten a few pieces of the bread, but it wasn't much of it. I feel like I'm getting enough to eat, I think... Not sure if that's my brain telling me I don't want food because I'm satiated - or my brain falsely telling me I don't want or need any more.

The Breathe Deep Cleveland 5k walk/run will have a website up later this week. I believe it might be live now, but don't want to tell you to sign up for anything yet in case it might still be buggy (my contact at LUNGevity hasn't announced that the page is up, so I'll wait to post about it).

Today I'm giving you homework. It's time to make an upbeat playlist for those gloomy days. In comments, please leave your favorite upbeat song. You can also Tweet me if you'd rather do that, or leave your suggestion in my Facebook comments. Help me out! (Note to Dr. P: Tubthumping is not allowed on the list.)

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.

Just the basic facts, can you show me where it hurts?

Come on, now

I hear you're feeling down

Well, I can ease your pain

And get you on your feet again...

-Pink Floyd, Comfortably Numb

There's something a little freeing about a bad diagnosis.

When I stopped the clinical trial, pain came. My right hip started to hurt again. My legs got stiff. Recently, my shoulder started to ache and make my neck stiff. I blamed the cold air, anxiety about the lack of current treatment... But you can't diagnose yourself.

Listen to your body - even if you're afraid of what it's telling you. I have such a good oncology team and I can communicate with them as needed. I mentioned the pain, and my doctor wanted to get a bone scan. The scan turned up additional spots on each thigh bone, and my shoulder area.

When you can't have a cure, answers/explanations are the next best thing - for me, anyway. So that's why my shoulder hurts. That's why my legs have felt weaker. An answer, even one that could have really been a lot better, feels like a weight lifted. I'm going to try a new (to me) medication that is another ALK inhibitor (Zykadia) and see if that works. It looks like radiation will probably be on the menu, soon.

I'm destined to be zapped, hooray!  I mean that hooray seriously - I've responded well to radiation in the past.

I've been ridiculously sad lately. I called off twice last week because of the pain. I contorted myself in odd positions and plied myself with pain meds and trash television to take my mind off of it. No matter how sad I get sometimes though, I choose to live. We will try and try again.

No news isn't always good news, and bad news isn't always as horrible as it seems - sometimes it just changes your path.

Never give up. Never surrender.

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!).

Maybe We're Crazy...

It's amazing the crazy things you'll do when you have to.

Sometimes when I'm sitting on my bed giving myself a Lovenox (blood thinner) shot I laugh to myself and think, "Who on earth would willingly stab themselves in the stomach with a needle?" but I do it anyway, because I have to.

I've had people ask me "Why on earth would you want to do chemotherapy? That stuff is POISON! Here, eat lemons instead." Wait, seriously? I mean, it's not like I *enjoy* chemotherapy - does anyone? I seriously don't see anything like this happening

This never happens.

...But you do what you have to do. Sometime it's unpleasant -  but that's the reality. There's science behind its efficacy, there's no science to your lemon juice enemas.
If there's one thing I've learned, is that you really need to communicate with your doctors. Anyone I've worked with has always had a "Help me help YOU" mentality. You don't feel well? Tell them. Some weird side effect? Tell them. ASK QUESTIONS. This is basic, but I've know plenty of people who would soon rather not go to the doctor at all, or wait until whatever they're going through is REALLY bad, or trust the advice of their doctor implicitly - no questions asked. I'm not saying doctors are bad, but you really ought to know about what they're doing for you/to you or prescribing for you and why. Don't gamble with your health!!

C'mon, clean bill of health...Aaaaaand, STOP!

An office co-pay costs a LOT less than a trip to the ER, or an inpatient stay. Do not ignore your body, because it'll tell you something's up - more often than not. I've said it before, if you don't have a Primary Care Physician, you need to get one. Mine truthfully saved my life. I may have cancer, but she found a blood clot in my leg that could have easily caused a heart attack or stroke. I'm grateful that I had a physician to assess me before it was too late.

I had my third round of chemotherapy in the clinical trial yesterday, and I have to say I feel pretty good. My legs are sore, but the previous two days I did more walking than I've done in a LONG time. Pain management is key, honestly. It took me a year, and multiple "Don't be a hero!" speeches from various nurses to realize it. My oncologist actually had the best words for me, and they were basically that if my pain is getting in the way of doing basic/everyday tasks, I'm not controlling it properly. I'd have to honestly say that was the very moment I started staying on top of my medication (with a couple of slip-ups, sorry doc).

I was given Benadryl for one of my pre meds, and it's wonderful. It helps to prevent allergic reactions and it has the added bonus of making you sleepy. My husband came to visit and I was evidently snoring through most of his visit. When I got home, I slept and then slept some more. The only gripe I've had is that in the past two weeks I get leg aches about an hour or two after I get home. Yes, I mentioned this to my nurse!

I was well enough last night to cook dinner for three people and I actually ate it all. I gained the four pounds back that I'd lost last week from being so sick - I suppose that's good? Now is not the time to diet, I know.

I'm looking forward to Christmas, especially if I keep feeling the way I do now. The worst thing I've got going for me now is fatigue, and that's been pretty common any time I've been in treatment. It's okay, I still go places and am as social as I can be, but some situations are still overwhelming. I have to sit down a bit, and got a little sore when I was standing in the kitchen for a long time - but it's easy to fix... Just sit down. Duh...

For the record, I still dislike Chipotle (though calorie-wise that's probably a good thing) and ice cream. Ice cream!? Blasphemy!! How could you, body?! No fair. No fair at all. I loved ice cream, and now it's just...Meh.

I think I'm experiencing my first real bout of chemo brain, though - and it's kind of funny! I haven't forgotten anything terribly crucial, more or less which exams people are taking at work and what day it is. Not a big deal.

Tonight I'll hopefully be able to bake some cookies, and attend a holiday party for a friend of mine. I hope I'm not too tired!

Un Poco de Todo

If this entry were a Jeopardy category, it'd be called Hodgepodge or Potpourri. I'm all over the place.

See that drawing, though? That's me. That's me last night, practicing to be some sort of human pretzel. I fell asleep in this position because I felt the least amount of pain this way. The illustration isn't wrong - I fell asleep with no covers on. I was roasting. The important part here, is that I'm smiling - and sleeping.

It's been about three weeks since I applied for the HSP-90 clinical trial, and there's been some drama in relation to the screening tests. I had to have a CT scan, an MRI, an eye exam and various lab tests. One of the lab tests they ran was for the pregnancy hormone, also known as HCG. A day after I have all the tests done, the Clinical Trials nurse calls me before I go into work. She asks, "Is there any way you could be pregnant?"

"Um, no?" I explain to her for various reasons. She tells me that my HCG level is elevated and that my test is positive. She tells me I'll have to have a repeat test, but assures me the level probably won't go up.

It goes up.

It goes up a third time. They tell me I have to consult an OB/Gyn to confirm I'm actually not pregnant. They offer no other explanation as to why this could be happening. I worry, panic, and think about how absolutely f*cked up it would be for a cancer patient with an IUD that wanted to have children and -tried- forever and ever to actually be pregnant. I call my doctor and I proceed to freak out. I tell her the levels the study nurse had told me (5.2/6.4/7.6) and she laughs a little, and explains those numbers wouldn't coincide with a pregnancy - that there's likely another reason for it.

Super-Gyn runs an additional test and determines that the HCG is coming from my pituitary gland, not my uterus. Which means...

Truthfully, this blows my tiny mind a little bit. Not because I can't have children now - I've made my peace with that and have decided that being able to  just survive would be AWESOME - but because I'm 36 years old and I'm going through the "Change 'o Life". It's funny and weird, but it is what it is. This is happening thanks to the chemotherapy treatments I started in the summer. 

If you're curious about pituitary HCG and peri-menopause, here's a science-y article on the subject. 

Needless to say, Super-Gyn sent a letter to the oncology department at the "other" hospital (which I don't like at ALL by the way, sorry) assuring them I am not pregnant. I think she even used all caps, at one point. 

My doctor at my "home" hospital really went to bat for me - and they always have. I'm not thrilled with going to another hospital for this trial... Not in the slightest. I miss my team, my doctors/nurses. I'd like to think they miss me. I don't feel like the folks at the new place give a damn about me as a person, but maybe I'll at least give them some good data. We'll see.

The reason for the first illustration of me sleeping in a weird way is because of some terrible pain I've been having. My left hip has been hurting a lot, which has been causing referred pain elsewhere, and some mobility issues. I can't really stand still for very long (showering was hell today). I know it's temporary but I seriously forget what "no pain" feels like. I miss

Christmas is coming up, and I really want to dive in. I want to put pine garland in the house, put up a tree soon... Bake cookies, the works. Hopefully my husband is down with this idea, because I really want to live it up this year. Did I mention that my husband is great? Last night he came to lay down next to me and we watched a TV show together. Every once in a while he'd rub my shoulder or hold my hand. Seriously, it was the the best thing ever.

Being with him is the best medicine/therapy, sometimes.

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, 

Wow. Such incompetent. Very annoy.

I haven't been posting a lot here, because I've been participating in a blogging/journaling trial that pays me - so that has become a bit of a priority. Sorry, I'm all about the dollar dollar bill, y'all. (sarcasm)

I had an appointment today to talk about the CT scan I'd recently had (Monday) and was supposed to have blood drawn 20 minutes prior. Well, I get to the Central Lab (where they draw labs for people with ports) and my nurse doesn't have me on her list. We find out through some sleuthing that my lab appointment was placed at the normal lab (why?). Whatever, they correct it. Then about 30+ minutes later, my port nurse comes to tell me that they made the lab appointment...

...But didn't order any labs. This is the THIRD time this has happened.

By this point it's about 45 minutes from when I originally arrived, we've blown past my oncology appointment by 30 minutes and I am livid. I vow that I am going to walk out by 11:30 (this is when I was due to work) if something doesn't happen. I was able to see my doctor, but didn't end up leaving until close to noon - had someone not dropped the ball (I'm looking at you, oncology nurse) I would have been done much sooner and on to work.

Before you comment/ask, yes - I will be filing complaint. If it happens again, I'm switching to the Clinic.

There has been good response in my lungs with the new chemotherapy. The liver is questionable...My doctor said there was a very small amount of growth, but said that the old scan she's comparing it to was actually two weeks before I started chemotherapy at all, and it could be that growth happened during that time (one liver lesion grew a LOT in just four weeks, remember), So for now, there will be two more cycles of this chemotherapy and we'll follow up with a PET scan.

The PET scan will actually show areas with active cancer "lit up", A CT will show areas where cancer is or was, so it's not the greatest indicator of what's actually active right now. After the PET scan, we'll see what to do next.

I've been having a ridiculous amount of pain in my left thigh. Nothing showed on the CT scan, so the oncologist feels that it's muscular. I feel that it's annoying. Oxycodone just makes me numb and sleepy, and Flexeril kind of works... I feel like I'd love to jump in a pool to stretch it out, I don't know. My doctor just said to take pain meds and not to put too much weight on it (no running, lifting weights - she says non strenuous biking should be okay). In a way, I don't feel that it's good enough - but whatever. I don't remember doing anything to provoke the injury, I just want it to go away. I have moments where I can walk like a normal person, but they're few and far between. Otherwise, I'm afraid to get off the couch because it's probably going to hurt. I hate this the most.

My third cycle of chemo starts tomorrow morning. Ice cream is on the menu, I think. We plan to have a nice dinner tonight (before stuff starts to taste bad) but that will depend on the weather.

Wigging OUT!

Unfortunately, my week-long getaway in upstate NY had to end. We got home this afternoon after splitting the 9+ hour ride home into two days (we stopped last night in Syracuse).

The drive out of the Adirondack park was pretty scary. At times, it rained very hard. The roads were mostly in good shape, but many lacked the little reflectors that we all probably take for granted most of the time. There were some curves/turns that didn't have reflectors on poles by the side of the road, and there were no street lights. We made it out, but it didn't get much better on Route 81! I was so glad when we finally stopped moving (in other words, arrived at our hotel)!!

We'd just enjoyed a dinner and celebration with a LOT of family members who drove/flew in to celebrate my Father-in-law's birthday. He really does a lot for us (and for the rest of his family) so it was really wonderful to have a day with so many loved ones that was all for him. It was really great to see people I hadn't seen in a couple of years (or more). It was sad that we had to leave so soon, but I'm back to work tomorrow. 

I was having quite a bit of pain in my left leg all week, but yesterday was the worst. Pain medication didn't touch it - but to be fair I only tried Advil, I did not want to take narcotics or muscle relaxers. I woke up today with significantly less pain, so that was nice. I can actually walk today without hesitation or limping. I've brought it up with my oncologist's nurse who thinks it could be anything from referred pain from bone mets, or just a muscle pull. 

This week I meet with my Radiation Oncologist to follow up on the CyberKnife treatment I had. We're not doing any scans, it's mostly just to discuss how I'm feeling, and to talk about any side effects I'm experiencing. 

My hair continues to thin, and it's getting to the point where it's annoying me. It sticks straight up most of the time, and it's very obviously extremely thin when I slick it down with something. Most people say it looks great, but I have a hard time believing it - I think it's mostly positive talk and that's great, but as I continue to pull away little bunches of strands whenever I touch my head - I tell myself the hair has got to go. 

I checked with my insurance rider to see if my plan covers wigs. Good news, it does! Bad news, there's only one networking provider and it seems that they only specialize in styles that pay tribute to 1970s power-butch lesbians. 

Rawr.

That's a fine thing to be, but the hair-do isn't my style at all. They only have 15 designs/styles and they are nearly identical. I looked elsewhere online and DAMN... Wigs are expensive! I'm not trying to emulate Beyonce, I don't need a lace front - but short of wearing a halloween novelty wig, I'm going to be out a few hundred bucks, at least. A friend of mine has offered to go wig shopping locally, where I am told I can find perfectly good options well under 100 dollars. 

Until then, I do not know that I am ready to rock the baldness - I still don't like scarves very much (I'm just not used to feeling them on my head, and they kind of itch) and there's one hat that I love, but it's not appropriate for all situations. I will continue my research!

That's all for now. I didn't even drive today but I'm exhausted (and getting sick, I'm afraid. I have a persistent sore throat). 

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! 

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...