Saturday, September 15, 2012

Miscellaneous Ramblings...

It's the time of the afternoon when, nearly every day, I feel bored, restless, and most of all useless and purposeless. And overly-emotional. Good time to get around to an update post?

Day 4 1/2 of Xeloda. The fatigue is starting to accumulate, which lends to the overly-emotional part I'm sure, but my feet are doing pretty well, thanks to my really awesome gel freezer cold pack thing I got from physical therapy three years ago. My biggest complaint today is headache and forehead pain. It's been going on for a couple of days now. Early on in my Zometa treatment, I had at headache at one point for a month and half. The pain is in about the same place that it is now. My forehead, though, feels like I ran into a corner face-first. (I actually have personal experience of this nature, having lost the vision on my left side as a child. Running into corners, people and walls was pretty common for me. Okay, sometimes I still cut it too close on that side, but this pain is on the RIGHT side.) It feels like a bruise, running from just above the inner point of my eyebrow upward to about mid-forehead. At the base of it, there is a small lump. If the pain didn't also radiate upward from where the bump is, and had I not has similar pain three years ago, I would assume I had one of those under-the-skin zit things going on. Those suckers can be painful! Since I know I have mets on my skull, but don't know where, of course there is the side of me that thinks it's cancer. The headache part feels familiar, and headaches are a possible side effect of both Zometa and Xeloda. The bruised tenderness thing is new. The little lump it new.

That was a huge paragraph to say "my head hurts".

We're nearing October. Brace  yourself. More and more bloggers are speaking up about Pinkwashing and the pink ribbon culture and the sexualization of breast cancer. Three years ago I felt no one was saying what I felt. Maybe I just hadn't found them yet, or maybe the word and the sentiments are spreading. (I almost used the A-word. Awareness.) Maybe I'm just getting lazier and lazier, but I don't feel like I have to try so hard to express what's wrong with the pink culture because so many great bloggers are saying it. Did I say the same thing a year ago? Well, it seems to be spreading more and more. I'm darn proud of that. I'm super happy about it. I'm so glad I can point to the bloggers who do all the hard work, that I can repost links on Facebook of all the wonderful articles they post and share, that I can add blogs to my blog role so others can find them, too. Sometimes, some issues get too political for me. That exhausts me. I'm more than happy to let others take the lead on those. I comment occasionally. I get really bent out of shape occasionally, too, but usually keep it to myself. I've been thinking for weeks about writing about how irritating it is for something to be wrong and not get any attention for its wrongness until someone trips on one of those politically correct or incorrect hot buttons, and then the wrongness is noticed, but not necessarily for the wrongness perpetrated up to that point. I experienced something similar, back in my professional days, and this recent issue brought the anger back up.

How's that for skirting the issue?

I think I'll chicken out and not write the post I've been contemplating for a couple of weeks. It would probably be okay, since so few read my blog, unless I post a link on my Facebook page, in which case a couple more people read it. I'll admit it, I hate getting shredded by opposing opinions for expressing my own.

This didn't take up nearly enough of my afternoon angst time.

Among my silly things (I know there's a better word than that for it) that bother me, especially in the afternoon, is where to sit. I don't know what to do with myself. The chair is not a recliner (I'm in the market for one), the sofa is only comfortable for so long, and if I spend too much time on my bed during the day, it isn't comfortable at night. The real problem is nothing productive to do. I should dive back in to my crochet and get somethings finished before the weather turns cooler. I have a lot of things to find homes for this winter. There's no use crocheting things that never get worn. Maybe when it gets cooler, I'll go over to my mom's house more often and spend time sitting out in her back yard, which is lush and beautiful in the fall/winter/spring and too hot to enjoy in the summer.

Back to the Xeloda...I want to gripe a little. Sure it's an at-home treatment, but the routine is getting tedious really quickly for me. Getting out of bed and eating breakfast at the same early-morning time every day is a huge thing for me. Then set the timer for 30 minutes and sit with my feet on the cold pack for a while, then take the pills. Really, it takes about an hour, and as much as the morning dose is hard because it's early, the evening dose tends to run into anything else I could possibly want or need to do. With the eat 30 minutes prior thing, and the ice pack on the feet thing, it's not just taking a pill, and really can't be done on the run. Not that I run much, but I'm not one with a regular routine. I start dreading the next dosing session. Then I start feeling restless and useless.

Oh, speaking of prescription drugs, I guess my big news should be that I am all the way off the pain med I was tapering down on. I haven't had any in three days now. I'm taking a different one, milder one, that hopefully won't cause the same reliance issues, but that will hopefully be a little better than plain Tylenol or ibuprofen to keep my pain levels down. I really don't have a lot of cancer-related pain right now, so knock on wood. I don't know what I'll do when the time comes that the pain is back.

So here's another thing...the literature handed out by my oncologist regarding Xeloda states that Xeloda "may lengthen how long a person lives by several months". WHAT? Time for some straight talk with the oncologist. How much does treatment really change the time we have? If it's only months, then the expense and physical toll are not worth it! My biggest worry, however, is fractures, breaks and collapse in my spine. With two hot-beds of activity in my spine, I need to do something about those. Is chemo the only option now that the hormonals have failed? The spot we radiated at my lumbar compression fracture / site of my vertebroplasty doesn't show cancer activity on the scan any longer. Is it worth the risk of side effects from radiation to zap the other two places? One of the activity spots on my spine is down lower in the lumbar than the was the compression fracture. I sure don't want a compression fracture or break down lower! That has nerve pain written all over it!

I got an assistance grant for  my Xeloda copays. The grant is good for a year, but is not enough to cover my copays to even the end of this year. After that grant runs out, no more Xeloda for me. Possibly no more anything for me for that grant period, because the grant is for anything related to metastatic breast cancer, not specifically for Xeloda. Is there a medicare plan out there with better coverage of cancer treatment than the one I have this year? (I have an insurance guy to help me.) The grant is from the same foundation that gave me grant money for Zometa. I think the lady at the financial department of the specialty pharmacy said the amounts could be combined, in which case, time to take a break from Zometa, and leave the funds for Xeloda. I wonder how many cycles Xeloda takes to show improvement in the tumor marker numbers or not?

Oh the things that occupy my thoughts constantly...

Tuesday, September 11, 2012

M-m-m-my Xeloda...

Who heard The Knack in their head when they read that? C'mon, raise your hands...

I'm back up from bed because my feet are being assaulted by thousands of tiny fire-hot pins...
Thousands of little blacksmiths 
are forging minuscule weapons 
at the foot of my bed 
and thrusting the tiny swords 
into my feet when they come
 out of the white hot coals.

No blissful falling asleep without knowing it...did I take my Ambien too early? Did I eat dinner too late? Is Xeloda going to aggravate RLS? Cuz my whole body feels edgy tonight. I hoped it would make me really sleepy and I would be sleeping more easily. It's only day .5 (since I started with an evening dose) this my regular crap, or my imagination, or is it all about to get a lot worse?