Good Morning, Sunshine...

There's something about sunshine that makes me a little giddy. The warm blanket hug of sunshine on my face and hair, the way a fuzzy kitty's head smells after she's been basking in the window for a little while... It's good stuff.

Yeah, it's not very warm yet. If I told you that today's high was going to be around 50, many of you would probably shiver out of empathy - 50 isn't that bad when it comes to Cleveland, not after weeks and weeks of sub-zero temperatures anyway.

My Brother-in-Law is coming to visit us tomorrow, and we're going to see a Cavaliers game with him. It should be pretty good! I'm not interested in basketball in the slightest unless it's the Cavs, and I'm seeing it in person. Snobby, huh? Nah, I just think watching a bunch of athletes running to and fro on a TV screen is boring.

Last year, I made a March Madness bracket and busted it on the first day. Don't care.

Spring is definitely coming - I'm anxious to rip the plastic off of all our windows and mop all the floors/walls/everything so that our house smells like sunshine and Murphy's Oil Soap. I don't think we're at that point though, I'm afraid. Not quite. I really miss the outdoors, though. I miss the smell of sunscreen, I miss eating ice cream outside with bare shoulders. I miss a lot of weird things, but you know exactly what I'm talking about because I bet you've experienced and enjoyed a lot of these same things.

You know that feel, bro. You know.

I can't believe we're less than two months away from the Breathe Deep CLE event, it's surreal. I have such high hopes for this thing. We have 15 people signed up and a good chunk of money raised already but we need more. I want this thing to be EPIC. I know it has the potential to be - if you think about how many people are impacted by lung cancer in some way - or hey, even cancer in general... Come give us a shout out. Walk a few miles (you can borrow my shoes, if you want!) and eat a bagel. Hug someone, ask questions, learn things. It'll be fun. My hopes are so, so high.

Remember what happens on this episode of Saved by the Bell? Well don't worry, I'm not going to go on a speed bender and break down in Mark Paul Gosselar's arms (unless he's available?). I'm just a little scared. I'm afraid of failure. I'm reminded of a time when I had a birthday party and only two people came. One of those people stole some of my presents. Why was I friends with her, again? Never mind.

It has to succeed, it just has to. I'm not saying this because my name is all over it - I just want people to come out, take a walk, and learn things. Understand what a huge impact lung cancer has on us all.

There was a time in my life when I liked sweets and candies and overall horribly bad, processed foods on the regular. No, seriously. A "fancy" dinner for me used to be frozen peas, Shake & Bake pork chops, and instant mashed potatoes.

My favorite lunch was Bagel Bites. Ew, right? I did crave them with one of my treatments, but it was a one time thing. They're cardboard saucers with "cheese" and some horrible sauce. If you aren't familiar, be glad.

My point anyway, was that I also used to hoard Cadbury Creme Eggs. I hadn't had one in ages, so I decided to get one. Hello terrible chocolate with gritty sugar filling! I'm kind of sad I hate them now, but in a way, I'm really not. I don't need that stuff.

My love for marshmallow eggs will never die, though. I'll probably buy one this weekend. Maybe. I think we're going to have a "traditional" Easter dinner this Sunday, with deviled eggs and ham and that sort of thing. In other words, leftovers forever!

Don't let it consume you.

I have negative thoughts, but it doesn't mean I believe in them or entertain them. I thought to myself how funny it is that years ago I would call off work for "mental health days" simply because I was being lazy. Now I have days off with nothing to do and I go stir crazy. Blah, blah...Taking life for granted...Yadda, yadda. Nope. But I got a chuckle. Those thoughts are present, and I could dwell on them and let them consume me, but I don't do that. Waste of time. Moving along...

I'm off work today, and spent most of the day resting (read: sleeping). I had back spasms this morning and my leg hurt some. I got a bit overzealous yesterday and unwrapped a rolled up area rug that had been leaning against the wall (vertically) waiting to be put in the dining room. I pushed the dining room table out of the way and once I unwrapped the rug (it was wrapped in plastic) I unrolled it. 

Did I mention I did this "secretly" when my husband was in the shower? Yeah. 

When he was done showering, he asked me why I did it. I know I shouldn't take on such things by myself - but I guess one of the things that bothers me the most is that I can't really do a lot of the things I used to, as far as helping around the house goes.

I feel bad that my husband takes on a lot more than he used to have to. He works so hard all day long and then comes home and works more. I don't feel like I'm contributing like I should be (or could be) and that bugs me - a lot. I used to be able to do dishes, dust, mop... All sorts of things. The mets in my bones sort of make it painful to stand in one place too long. If anything makes me feel bad/terrible, it's this. Once we have our dining room completely together I'm going to call the cleaning ladies I used to use at our old place and start to have them visit us again. They're wonderful women and they were always thorough and kind. 

I do know about Cleaning for a Cause - but I got put on a waiting list over a year ago and didn't hear anything back. Besides, I'm not looking for a handout - I'm looking for a clean house. Don't mistake, our house isn't dirty by any standard. I even joked that I wished it was, then I'd have something to do on my days off (I can push a Swiffer for 5-10 minutes at a time, after all)!! 

Anyway, if you're a cancer patient going through treatment and need some help around the house, check out Cleaning for a Cause. You may have better luck in your city than I did, and it seems like a really good idea. I'll stick with my ladies. 

This Thursday I give winter the finger and head down  to a warmer climate for the weekend. I don't really remember what warm weather feels like, so I thought it'd be a good idea if we went somewhere to remind ourselves. Hopefully I'll feel up to renting a bicycle to explore some, we'll see. I'm looking forward to sunshine and the smell of the ocean. 

Until next time!

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!).

Simple Gifts

“It was only a sunny smile, and little it cost in the giving, but like morning light it scattered the night and made the day worth living.” 
― F. Scott Fitzgerald

I'm playing it cool right now. Not getting my hopes up, and not wallowing in gloom and despair. I've had two infusions in the new clinical trial and am feeling pretty good. There's a lingering fog, sort of - and I'm told that's normal. I'm not really as reliant on pain medications as I was (I'm taking them once or twice a day instead of religiously every four hours).

When I was in the grocery store with my husband yesterday, he seemed really happy. I asked for the reason for his grin, and he remarked that I was walking "fast". I have been able to keep a more reasonable pace in the past few days when I'm walking. I still get tired easily, and can't really stand for too long without having a little back pain, but this week is going much better than last week.

I got to the hospital Friday morning and had labs drawn, and then saw the nurse and doctor for an assessment. In the course of one week, I'd lost nearly four pounds from being as ill as I was. My lab work looked good and I was cleared to have the infusion. There was one huge difference between the first and second week, and it made all the difference in the world.

When you receive chemotherapy, it's pretty common to receive what are generally referred to as "pre meds" which is not a reception with a bunch of soon-to-be interns and residents - rather they're medicines that you take orally or via infusion that may combat some of the side effects of the chemotherapy drug(s) you are about to receive. When I was receiving infusions during my last round over the summer, I got an anti-nausea medication (Zofran or Emend).

During the first round of this clinical trial, I had no pre meds at all. I also hadn't eaten anything all day long, because I didn't know how the day was going to go, and naively thought I'd have time to grab a bite somewhere. I was also alone.

Don't go to a chemotherapy appointment alone, if you can help it.

I had a pretty bad reaction to the drug (heart palpitations, sweating, and something that starts with a "d" that I don't recall) and was given magnesium at the end of the infusion, which also made me terribly ill. Zofran didn't touch this nausea, and I was sick for days. I missed work on the following Monday because I couldn't stop throwing up. I seriously pondered quitting the trial.

I spent the week leading up to the next infusion pretty terrified and anxious. My Xanax was nowhere to be found (we found it Thursday). I really in a lot of ways, didn't want to go through with it. It's strange, but I somehow feel a sense of duty to continue this treatment. Not just for my own well-being and chance of survival - but for science. There aren't too many ALK+ out there, and it's very fulfilling to me to be able to help doctors and scientists understand what makes this disease tick. I feel like I'm giving back. I hope that the data they collect helps someone else down the road, and that makes me happy.

I don't want anyone to ever have to suffer through the things I've gone through, and it pains me to know that there are hundreds of thousands of people that are in pain, that struggle to breathe and wonder if they're going to have another holiday season with the ones they love. Someone always has it worse, and it's heartbreaking to me. We need a cure. We need scientists, doctors, and studies/trials.

The next (second) infusion came with pre meds (Benadryl, Dexamethasone and Zofran) and I have had almost no issues, save for some pretty bad leg aches the first night, presumably from the steroid. I've been able to eat a little better, and have been sleeping well. I get a little cold - but my red blood cell count and hemoglobin are slightly below normal (not in a concerning way) and that just sort of happens. The solution? Socks. Blankets. Warm drinks!

My mother visited for my last infusion, and plans to come for this week's treatment. It makes such a difference to have someone there, or something to distract you. My most positive experiences have been when a friend or family member was there to chat with me and keep me company. Otherwise, you just end up staring at the timer on the IV pole and wait for the time to tick down. Those of you that know me probably know that I like to draw and doodle. I've been chided by bosses and managers at former jobs for doing so, and even had my pens and pencils taken away by one particularly crotchety boss.

Before treatment I'll ask my husband what he'd like me to draw. Once it was a Chococat kicking a soccer ball. This last time, I drew Boba Fett dressed as Santa Claus. It's entertaining and sometimes a challenge, and it gives me a bit of childlike delight when I show him and say "Look what I drew you in chemo!" where a child might say what they drew in class. None of my drawings have made it to the refrigerator - but I haven't asked, to be fair.

Ow?

I actually don't even know that I'd want a drawing on the refrigerator. I'm a little old for it, aren't I?

Anyway, we're 9 days away from Christmas and it's bittersweet to look back on the previous year. I had been in the hospital through Thanksgiving and into the early part of December. I was very ill. This year, I feel pretty good. I'm far more optimistic. I'm nostalgic, I feel the need for warmth and coziness in some weird, homey Bing Crosby-esque sort of way. I need my people. My friends. My family. All the people I love. I need cookies, maybe.

I don't want to say the supposed improvements to my health are miraculous or miracle-driven, though I'm not opposed to referring to them as such - if that's your thing. There's a lot of thought, planning and hard work that went into this trial. There were lots of experiments, failures and achievements by tens or even hundreds of scientists and doctors who studied for years upon years to develop the brilliant and analytic minds they possess. Without them, I might not be here today.

“We have two options, medically and emotionally: give up or fight like hell.” – Lance Armstrong

I choose to fight like hell.

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.