Thursday, February 4, 2010

Lymphedema and Me

I'm not big on self-pity. Never have been. I've always figured you just have to take what you're dealt with and make the best of it. Hopefully this blog has reflected that attitude.

Well, I'm having a hard time keeping that 'tude while blogging about my latest cancer adventure. And yet it wouldn't be complete without it. I actually wrote a blog entry several weeks ago, but it was too depressing, so I didn't post it. But while I'm sitting here in my LAST CHEMO SESSION!!! (Hoo-Ray!!!) I figured it's time to get to work on it. And meanwhile things have gone from icky to double-ick. So keeping up a positive attitude has gotten even harder.

Without further explanation, let the pity-party begin. Here's the deal: I've officially had a new diagnosis to add to my lovely medical regimen. It's called Lymphedema, and is fairly common after lymph nodes have been removed. Basically when the lymphatic system gets messed up, the lymphatic fluid in your body tries to find new pathways, and it ends up like a big traffic jam in your arms or legs and they swell up, like this:

Fortunately I don't look like that lady. My arm is only a couple centimeters bigger than it used to be. What's truly depressing is that I was told my good news is that the sooner it is discovered the better, so treatment can begin immediately. And I literally found it on the first day and called to make an appointment with a specialist. Well, the regimen is mind-blogging. I wear an ugly brown compression sleeve that goes from wrist to elbow, along with a "gauntlet" of the same color on my hand. Plus there is weekly "drainage" sessions with a therapist, and twice daily self-drainage sessions that I do on my own for about 20 minutes each. Plus deep breathing exercises and "pumping" my hand while holding it in the air several times a day. But despite all that the condition has gotten worse. It's moved into my torso, so now I also get to wear a lovely compression camisole, and all other treatment times have been upped. And even worse news is that the radiation I'll be starting next month focuses right on the damaged area, and is known to either trigger or worsen lymphedema.

When I first got the diagnosis I looked up the word and got this depressing little tidbit:

Lymphedema is a notoriously debilitating progressive condition with no known cure. The unfortunate patient faces a lifelong struggle of medical, and sometimes surgical, treatment fraught with potentially lethal complications.

I was sighing in an earlier post about my tattoos (there are six, the most noticeable of which is a nice blue dot right in the middle of my chest, by the way.) But this is where the real sigh comes from, if you'll allow me. Sigh. Sigh. Great Big Heavy Sigh.

There's only one upside I can find to this thing, and that is it beats being dead.

But I guess that's a pretty big upside.


Kimi said...

I didn't realize how behind I am on your blog! 4 posts worth.

I'm sorry you're having all these terrible side-effects. You're right, it's better than dead, but STILL!

I'm gonna call you today, so...later!

jtlysiak said...

I would like to be in count with you is it possible
I am the lady in the picture how did you get it

Suzanne Reese said...

Please post again with contact info if that really is you! I'd love to share info.