12-29-04

"Palliative."

Palliative is my least favorite word right now. It is the current object of my hatred. I suppose, I should be positive about the word palliative. It refers to care given to lessen symptoms and lengthen life... but the unspoken ugly side of the word 'palliative' is the idea that it is treatment with an objective other than a cure.

My mom has lung cancer. I have been wanting to write about it as so many of my thoughts swirl around it. Who knows what will come of this little journal. It feels like something to be shared, but something to be shared carefully.

Mom found out right before Thanksgiving that Lung Cancer was the beast we would be fighting. A few weeks later, we found out that it was Stage 4 Lung Cancer. Damn it. Those were the words that my being beat out and my mouth uttered over and over when we got that news. Stage 4. That's the incurable kind. That's the kind with stats that indicate that less than 5% of people who hear the words in reference to them make it five years. That's the kind they can't operate on. That's when they use words like 'palliative.' Damn it.

I tell myself that my mother is not a statistic. That she is a person. I know this is the truth. I tell myself I have to hold onto hope. But then I wonder what it is that hope exactly means in this situation. What is hope and what is whistling in the dark?

As I write, more and more things that I have wanted to put into written form flood my mind. I want to talk about everything in this first entry, but what will I write about tomorrow?

I've been feeling rather a lack of support from my friends regarding this situation. When I sent out my 'bad news' email, I got a few 'We're praying for you,' responses. Then after that, it was like it hadn't happened. I haven't told most people that it's Stage 4 because people haven't cared to ask about it.

Then there are the people who do ask. There is the 'How is your mom?' that is thrown out there as casually and flippantly as a normal, 'how are you?' They don't really want me to say, "She's in a lot of pain." They want me to say, "She's ok," so they can feel better about themselves for asking and go on to talk about scrapbooking or boy trouble or grocery shopping. There are the people who ask probably with good intentions, but because of their ignorance, their mentioning it hurts. "Does she have a good chance?" "She's doing treatment right?" These are the people who probably know of cancer, but don't know much about it. Lung Cancer is a whole different ball of wax than what people are used to in typical 'cancer stories'. It's nice that they try, but it still comes as a kick in the gut, or at the very least a burr in the butt (depending on the way things go).

And then there are the people who say nothing. I don't know if that's easiest, or if it hurts most of all.

The best people are the ones that I know I can talk with about the situation and be real. The ones that know something about cancer of this type or have life experience that helps them to intuitively listen, ask, and respond. The ones whose 'been there/done that' t-shirts might not include the world 'lung cancer' but do include other words that give them a clue. These people let me know that they care about and worry about me as well as mom. They let me know that I don't have to sugar-coat the answers I give. And they don't try to make things better than they are. Then, when that part of the conversation is over... when I feel satisfied and emptied about the subject... we talk about other things. Normal things. It is a good balance. I thank God for these people. Without them, I fear I'd spiral deep down into the dungeon of isolation.

Then there's how I react to it. I'm 2000 miles away and all I can do is call home. I feel like every time I call, I am doing or saying the wrong thing. Mom always sounds like she really doesn't want to talk to me. If I don't talk about the cancer I feel like they think I'm glossing it over and just prattling on... Like I'm being like the seemingly non-caring people who say little or nothing to me. If I do talk about it, I wonder if they are tired of talking about it. I know that I get tired of saying over and over, "They're doing Radiation, and Chemo and she's in a lot of pain," to other people. It stands to reason that they don't want to give out the details of each radiation treatment every single day either. At the same time, if I don't call and ask the questions how am I supposed to know what is going on? I worry that I am tiring mom out, that I am making dad's day gloomier. It feels awful. After I get off the phone, generally about 30 seconds later I want to pick up and call again. That urge comes and goes for the rest of the day. I miss my parents, and I want our talks together to be more than about the beast.

That better be my last thought for tonight. There will be other nights to talk about the other things swirling around. Now there is an established place for the 'Cancer Musings' to go and somehow that makes me feel better.

*N0te* I have since discovered that at this point, we're not to what is thought of as 'palliative' care. We're still fighting... hoping for remission, and hoping that each gut-wrenching treatment mom undergoes will bring us a little more time together.