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.)

I just wanna fly.

Here. Have an earworm.

When you have cancer you forget that you can also get "sick" as in get a cold, get a stomach bug...

I forget, anyway.

I sort of felt off the past day or so, I have a little cough that doesn't amount to much and my nose has been running for what feels like two years (no, seriously). This morning I woke up early because I had forgotten to do something for work before I left last night so I had to get up and send an e-mail, and I notice my throat hurts and sort of has that yuck factor to it. We'll see, but I'm pretty sure I've got a little cold.

This happened not too long after I left the hospital in November of 2013, too. I'd been in the hospital over two weeks and had undergone a fairly major procedure during that stay. I got a little virus and...

Freaked. Out.

That's when my doctor and the clinical trials nurse I was seeing at the time introduced me to Xanax. I can still remember sitting in the atrium area of the cancer center one late afternoon in tears, when the nurse asked me if I'd ever dealt with anxiety before. I really hadn't - at least, not from any medical standpoint. I've never really been one to hop on any drug bandwagon, so it never really crossed my mind. Cancer is stressful. It makes you worry, so what? You deal.

Except in some ways, I wasn't dealing. I did have issues with anxiety that I was not addressing. I do not mean for this to be a glaring advertisement for Xanax or anything like that, but there have been some times where it has really helped me out. Anxiety medication is not intended to be an escape. It will not make those problems go away - that's important to understand! Sometimes I feel like I'm a broken record because I get a pretty serious feeling of déjà vu when I start to type out the words "ask your doctor" but it's honestly the best thing to do if you're not feeling right, or you have a question about your care and well-being. 

Moving on, I meant to write about something last time and I completely forgot. The topic contains so much content I didn't feel like editing my last entry, but it didn't feel like it warranted its own new post either (maybe it does, who knows?).

I am really afraid to make plans. Two years ago we'd made plans to go see Andrew Bird perform at one of his rare Gezelligheid shows in Chicago - they're shows that are usually performed in cathedrals/churches (video) in only a few cities. They're more intimate shows, and I just love the acoustics in big churches. I'd really wanted to go to one for a long time, so I persuaded my husband to buy tickets for a show in Chicago in December of 2013. When I asked him, I was actually feeling good and figured it'd be a good time. 

I didn't get out of the hospital until just a day or two before the show. I was in no condition to ride in a car that long, or sit at a concert. We didn't go, and I was heartbroken. I really didn't feel like I could, or wanted to ask to go anywhere again. There have been no Gezelligheid shows since.

Now, we have plans to travel in May and June. I'm excited, but I'm horribly pessimistic about it. There isn't a day that goes by where I don't worry about whether I'll be able to go or not, or who will go if I can't, or... Well, the list goes on. I have told my husband that if for some reason I'm unable to go on these trips, he should still go - and he does not agree with me. Go. Go. 

Take the damn trip, you!

I really should just think positive about it - just like with everything else... But it's hard. What I kind of want to do, is have a tantrum about it. Dammit, can't I just go on these stupid trips? Cut me a break, here!! Even if I have little to do than be a lazy tourist, I want to be one. I want to go to California. I want to go to Colorado. I have never seen these places before and I hardly see a point in waiting to go. LET ME BE A STUPID TOURIST, OKAY!? (end flailing)

Waiting for what? When is the perfect time to go, really? 

I don't feel like I can make these plans though, or that I deserve to in some way - and I know that's cruel to say (even about myself) because I totally deserve to go on a trip, I don't care if it's 50 miles away or 5000 - I should be able to go. I'm sick of feeling this way.

I'm going to go. Don't mess with me, universe. 

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.

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.

CyberKnife Episode IV - A New Zap

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

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

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

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

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

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

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