Feeling More Upbeat and Less Beat Up

Let me start by saying that the last several days have been pretty miserable.  The pain in my liver area has been getting increasingly worse, and I had this issue where I was getting a stabbing pain in my left shoulder when I took a deep breath (not to mention that breathing deeply further intensified the liver pain I was already feeling at a constant level).  I've been having to take ever-increasing doses of pain relievers to bring the pain down to a somewhat tolerable level, but it was still there.  I had to eat half-sized meals because anything more than that would be so painful for an unpredictable amount of time.  Sleeping was unbearable.  I would toss and turn, and whimper every time I hit a position that pushed on my liver.  The only way I could sleep was to sit up practically straight and take Oxycodone before I went to bed, and then half way through the night when I woke up in pain again.  And I was so tired all the time!  This does not make for a happy Megan.

Today, I feel much better.  I don't know exactly what it is that is contributing to it, but I suspect it's a combination of the following:

• New pain medicine that is designed to release slowly and last longer (Oxycontin vs. Oxycodone).  I got a full night's sleep last night with the new pain meds!
• The two high doses of steroids that I had to take for my scan this AM (more on that later).  I'm sure it gave me a lot of energy.
• Maybe the Xeloda.  Who knows, it could already be working.  I've taken 2 doses so far.
• The mental relief and optimism from knowing that I'm on another treatment and that should have mild side effects and that will hopefully work!

I had to get another scan this morning because when I mentioned to my doctor about the shoulder pain, she started asking other questions, and my answers were concerning her.  I've been very fatigued lately, and I've been getting short of breath with mild exertion.  Going up one flight of stairs was pretty challenging.  Three and a half weeks ago I ran 10 miles, where this past weekend I barely got 3.1 in, and I don't know if I'd call it "running."  She was concerned that there could be some kind of clot or pulmonary embolism, so she ordered a CT scan of the lungs.  While it was a bit of a hassle to go back in today, it sounds like something that we should take seriously, so I really didn't mind.  Besides, we went so early that I was there and back to Worcester by 9:30 AM!

So far so good with the Xeloda, but I know I have a long way to go.  I'm taking 1500mg twice per day, and I have to take it for 2 weeks and then I get a week off.  That makes one 3-week cycle.  I'll be meeting with my oncologist right before it's time to take the next cycle, but I'll be communicating with her over e-mail to discuss how I feel and whether or not I'm experiencing any side effects.  It's not uncommon to have to play with the dose a bit, but she said that she started me off on a relatively high dose so that we can hopefully see some progress early on.  I'm assuming that when I see her next we'll discuss when my next scan will be.  Since this is not a trial, we have some flexibility here.  If I'm not feeling better after 3 weeks is over, we'll probably do a scan.

While I haven't been feeling very humorous lately (it's hard when it hurts to laugh), something kind of funny happened in the most recent appointment with my oncologist.  She told me about how the company that makes Xeloda has these bags full of information, a DVD that I will probably never watch (her words, not mine), and some pill organizers.  I could tell that she was bracing for an argument when she mentioned that I should really use the pill organizers.  I say that she was bracing for an argument because I am so "high functioning" and low maintenance.  I'm sure I surprised her a little when I was in total agreement.  Obviously I don't want to miss a dose, but even worse would be wondering whether or not I took a dose.  Sure, I could count them out, but if I'm already wondering whether or not I took a dose, should I be trusting my math skills at that point?  So, I set up my Grandma Pill Box:

Apologies to any Grandmas or pill box users who may be offended.  I feel like it's a descriptive term.  More importantly, I should have no question about whether or not I took a dose, and that's the most important thing.