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.)

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.

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.

There's no place like...

I'm prepping for a second berry pie right now, the bottom crust is in the oven, the berries are on the stovetop cooling, and the lattice top is unrolled and in the fridge still. I'll put it together and bake it soon.

I'm on my first vacation since I was diagnosed with cancer, and it's great! I've actually managed to sleep - a LOT - and have been feeling generally well rested. My husband participated in a triathlon on Monday and that was AWESOME! We're here for a little bit longer, then heading home.

I woke up this morning not feeling very well, though. Lots of knocking in my chest, nausea, and I was/am cold. I have obsessively (but discreetly - Hi Mom!) been taking my temperature all day and I've got no fever, but chills can be a part of chemotherapy. I took a Zofran and my other dailies and powered through it. Most food has looked awful to me all day long, and I managed to be nauseated most of the afternoon - but I'm okay. I ate enough, and the company I kept more than makes up for the icky stomach.

Next week will begin Cycle #2 of Carboplatin/Alimta/Avastin. This probably means that Sunday will be my worst (and whiny) day. I'm excited to beat the ever-loving shite out of my cancer, so naturally I am looking forward to next Friday.

I also miss my house, and my cats though. The knocking in my chest is (likely) my lung trying to open up more. My breathing is fine, and I've had no fevers since I finished the antibiotics for the unrelated infection last week. The sensation makes me cough, which makes me wheeze a little - and that always makes me nervous. That makes me want to run home, fast. In one particular coughing fit this afternoon I told my husband I wanted to go home, now. I don't feel that way now, but the anxiety still remains. Part of me is not comfortable with being as far away from my doctors/team as I am. My husband assures me that there are oncologists and a hospital nearby, but I don't know them and they don't know me.

The last time I spoke at length with a doctor who didn't know me, she told me I should be considering hospice (this was November, 2013). I was highly offended and her words sparked mental trauma I still fight with once in a while. That hospital stay was horrid, and traumatic in many ways. So while I'm somewhat comforted that there are medical professionals nearby if needed, I can't stop thinking of all the things they can (and probably would) say to me. I'm having a hard time thinking positive about that scenario.

There it is, just a little brain dump. I wouldn't be human if I didn't worry some.

I'm so glad to be where I am, though - and with my family. The combination of my surroundings and the people I'm with make this trip so very therapeutic. I wish I could stay longer - but also have the capability to teleport my doctors here if needed. The weather was dreary today and so I think that's part of the reason that *I* was dreary feeling. My family is pretty damn awesome, though. With them I can weather any storm.

Time to make that pie, now. If you're planning on heading over, it'll be done in an hour or so.

TTFN!

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!

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.

This is why I don't write in my food blog anymore.

Holy crap, my appetite sucks lately.
Barely ate at lunch.
Drank half an iced coffee.
Ate one bratwurst at dinner (barely).
Trying to eat ice cream to balance it out (ha).

I wonder if they'll let me order off the kid's menu.