Monday, January 14, 2008


warning: this blog contains horrible grammar. I tried to write it up pretty and correctly without the use of multiple commas and italics, but it wasn't working. In addition-I don't remember any rules of grammar, so there.

Where the heck have you been?
In the depths of despair, I guess. Not all the time, but often. This post is going to be a bit boring/informative/depressing and your welcome to kindly skip it. I even hesitate writing about it, except I told myself I cant blog about anything fun (like my last minute birthday trip to Chicago) till I fill you in on whats been making my life a little miserable.

Whats making you miserable, the shots? Its not the shots. They are sooo much better than my daily infusions. I will say I feel sicker more often than I used to, but maybe its just cause Im awake so I notice it. Some nights after the shots I'm up with the chills feeling very awful, but I only take them three times a week, and it certainly doesn't happen every time.

Are you still tired? I feel much less tired. If I sleep in I don't need a nap. Its just not that bad.

So your good, right? I feel like if I wasn't dealing lymphedema my life would be pretty perfect. Thats how I always am with trials though. I always think, 'anything but this. I could handle anything, but not this.' I guess Ive made it through all those times. And I suppose this will pass too.

Lymphe-what? They have a word in cancer lingo called 'aftereffects.' Basically when your treatments are over its the issues that the surgeries or chemo have left you with. I was sure I wasn't going to have any. Last month though, my leg started swelling. I was a little freaked out, but got an appointment with the occupational therapist. But she told me I had lympedema and that I always would.

What is lymphedema? So you have vessels and nodes thats part of the circulatory system called the lymphatic system. It collects and filters fluids throughout your body. It also helps in the immune response. If the system doesn't work properly the fluid cant make it back to the heart and it stays in the effected limb.

Why did this happen to you? I was only suppose to have a 10% chance of this happening after my second surgery. Breast cancer patients who have their lymph nodes removed have a 20-30% chance of getting it in their arms. The dr.s thought it would not happen to me because I'm young.

Heres what I think: It was that nasty infection I got post op. I'm going to have someone (I don't know who, Ive got to get some Dr. friends) do a study on it, but I think they should give you low dose antibiotics post op to someone like me who has had a) the nodes out, b) has a drain in their leg for a month just begging for an infection to climb up the leg, and c) has no way of fighting it off cause the lymph nodes are no longer there.

What are the complications? The fluid that is stuck in your leg is a good breeding ground for infections. I guess if your leg gets an infection its hard to clear up. You also lose some of your range of motion. Once the fluid has been there for a while your body grows connective tissue and fat, so your limb literally changes in size.

They call this a chronic progressive condition. If left untreated it can progress to later stages which they call elephantiasis. Did you read elephant? Perfect.

Worst case scenario? In rare cases of repeated infection, amputation. If you know me, you know Ive considered it.

Is there a cure?
No. They treat it, and try to stop the progression, but they cant figure out how to make it go away. For now the treatment is these ugly annoying compression stockings (which they only make in black and 'nude' that don't resemble anyones skin tone) that I have to wear all day. And then Josh massages it every night to try to get it out of my leg (and p.s., although he is sad that I am sad about it-he maintains he doesn't care that my legs don't match. Do we believe him?).

Is there hope? Theres always hope. I have some major faith in my genius brother Mike, who is conveniently getting his Phd at the U in microfluidics. I don't really know what that means, but I know if anyone can save people in the world like me, its my brothers. At least he said he would look into it-hope you were serious!

Whats so bad about a swollen ankle? Basically its just ugly, and a pain. I have to try to hide my ankles cause they look a I cant wear most of my shoes cause its too tight a fit. I'm not suppose to wear high heels at all (I've broken the rules of course because my winter boots hide it). That alone is enough to make a girl depressed isn't it?

To be honest, I think its been harder than the cancer thing. Not that I would rather have cancer, but it was easy to think I'm either living or dying, whats so hard about that? I didn't think option three was turn into an elephant!

The dying option was sounding good last week (which is so against everything Ive learned about life this year). I think the medicine is starting to play tricks with my mind and/or emotions(a common side effect is depression). I'm not used to being so sad and angry. No, I'm not used to being sad or angry.

Anyway, Josh went out of town for a night. We had strep. Luke was up coughing till 3 am (well actually I was up trying to cough for him because I have issues when I think my kids cant breathe) . I had given myself a shot that night and felt like I had the flu. I was so sad about my leg, I was pacing and crying.

I was seriously worried the cancer wasn't going to kill me. Whats going on? I'm 6 months into my diagnosis, I should be strong and brave and grateful to be alive. Shouldn't I? But then again, I can grieve over loss of said gorgeous limb cant I? Shouldn't I?

That was probably the worst night of my life.

But morning came and took it all away. Sometimes you just need to see the sun, don't you? Is that the same sun that gives you cancer and gets you here in the first place? The irony.

Are you really that shallow? Yes. But I'm trying not to be.

So, hows your leg doing? I'm only clicking 'publish post' because I've come to some sort of terms with having a 'condition'. I really am ok. I'm not ready for you to bring it up, though. If you want to see me cry, just ask me how my leg is doing. But if anyone has good news about lymphedema, please share it!! Tell us its not as bad as I'm describing and that I need to stop crying about it. Well, I know I need to stop crying about it. I just cant.

Is this blog going to get chronically progressively worse too? Most likely. But my next post is to chronicle exciting times in the Midwest!! And yes, I can still have fun!

Monday, January 7, 2008


Just a few words on James' (my six year olds) holiday.

James has been skeptical of Santa for years. Ever since he heard about him. I don't like to lie about said large man. Ive been dealing with the question "is Santa a real person?" by asking him "what do you think?." Or sometimes, "You will know when your older." He would sadly admit "I think I already know."

Here is James at Josh's cousins' Christmas Party (circled in red). He seems to be saying "You think this big guy can fit down your chimney? Impossible!"

This year on Christmas eve we watched Polar Express and by the end we were both confused about our convictions.

We caught him on tape that night, admitting he now believes in Santa. I was so proud of him! Maybe because I could never have said that at age 6, or because it was before he opened all the things on his wish list, or maybe because its just time to believe in good things. I don't know, but it felt triumphant.

On New Years at my in laws we took turns toasting something to 2008. I toasted 'to life' with a wink. James caught right on and got a little somber. He took his time, and asked if everyone was listening (all the while staring at me). He then toasted to what I think we all wanted to say, 'to health.'

That night he sweetly prayed, "please bless ALL the things we toasted to tonight will come true."

Hes not all hope and faith, though.

I was just reading to the boys the book A Pocket Full of Kisses. Its the rather cheesy story of a boy raccoon who is worried about his mom sharing her love and 'kissing hands' with his little brother. He doesn't think she has enough love for the two of them. So in a sentimental moment the mom takes the boy outside, points to the sky, and explains:

"Every night, just before the sun goes down it reaches out with its rays and touches every star in the universe. One by one, the stars light up and shine down upon us. Even on nights we cant see the starts, they're up there sparkling away. No matter how many stars fill the sky, the sun will never run out of light, and its rays will never stop reaching out to them.

Thats the way it is with kissing hands. When somebody loves you, their kisses are like the suns rays-always there and always shining."

James quickly jumped in "yea, until it burns up all its fuel and explodes."