Tuesday, September 22, 2009

If you don't know what to say...how about nothing?

So since I finally seem to be over the trauma of the pending hairloss (**still reserving the right for relapse), I want to help the women that are behind me just a little, the ones that are suffering in silence with the realization and trying to come to terms with what's to come. So, I thought in this entry we'd just discuss something that every cancer patient in the world would like to say to all of the people WITHOUT cancer. This is stuff that actually matters to people who've just gotten this diagnosis, but they aren't going to tell you for fear of being rude. Fortunately (or not) for everyone reading this, I'm a little less afraid of that than the average bear. So, here goes...

See, when you get cancer you inevitably end up talking about the cancer with almost everyone that you encounter, like it or not. Now, although it has become a very easy conversation for me since I am choosing to handle it publicly, that doesn't mean that everyone else is as comfortable. That includes those with the cancer and those of you without it. So giving the rest of the world the benefit of the doubt, I thought that I would help those of you who don't have cancer with a few common missteps that might just come up in conversation. You know, things you might be tempted to say for some reason that I cannot explain, but really just shouldn't be said for ANY reason.

Now as women, we have certain things that help define who we are. Our eyes, our smile, our style, our expressions, and OF COURSE our hair. Hair is a big deal! It's a BIG part of the whole package. No one gets this diagnosis and and says, "good riddance!" For many of us, "Am I going to lose my hair?" is the first question we ask. Possibly even before asking about the prognosis... Most will get the news that I did. "Yes, you're going to lose it." That news is quickly followed by a deep breath, confusion, realization, tears, panic, worry...all kinds of stuff BEFORE acceptance. That's about how it worked for me. With, of course, unexpected spontaneous bouts of bawling that can rise up at any place, time, or in any company. (If you happened to witness this from me, sorry about that. I really couldn't control it.)

So to be clear, here are some of the most common things that you (the women without cancer) should NOT say to one of us. Saying these things can have several outcomes. None of them are good. Let's have a look at why...

First of all, almost all of us do get wigs at some point. You don't really need to ask us IF we're planning on that or just going "natural". Maybe you COULD ask "Have we already shopped for one? Have you found a good place to find one?" Or be helpful with something like, "I have a friend who knows a great cancer salon..." Any of those are actually acceptable.

It's AFTER that where the conversation goes wheels off with comments like the ones to follow, all of which I had with multiple people. So, if you're one of them, you are not alone and I am not putting this out there to make you feel bad. I am not upset with you in any way, and might have said some of this stuff myself if I didn't actually HAVE cancer either. I just want to explain how there might be a better way.Or, to ask you to consider how you would feel if these things were said to you...Here goes:

"You should get a pink one!" Really??? Based on what? Why? Because everyone wants pink hair all of a sudden? Because people need extra help identifying cancer patients in a color coded fashion? Because once you get cancer, you want to draw as much attention to yourself as possible?? What's up with the pink comment?? Let's shave YOUR head and get YOU a pink one. It's just a year or two. No biggie. You up for that?? I didn't think so. So then, why would I be? It's NOT cute or OK to say this to us. So please, skip it.

"Have fun with it!" What does this mean exactly? I am so unclear about where the fun part is coming from. Is the fun part the anxiety of it all coming it out at once, or waking up in a bed full of all you your curls that fell out while you were sleeping? Maybe the fun is about praying it's not too windy in Dallas this fall (NOT LIKELY) or that your wig doesn't shift strangely off to the right during an important meeting with your President or while addressing a group of a couple hundred people (which I get to do this fall in my stinking wig). I'm just not clear on where the fun is supposed to be coming from! It's fun to wear a wig for Halloween. There's also a reason Halloween is ONE day a year, not 365. Have you ever worn a wig for Halloween and gotten up the next day and thought, "I wish I could wear that thing everyday!"?

Then there's the tried and true... "It will grow back!" So will yours! I'm so glad you have that attitude. Let's do it together! Are YOU going to get a pink one?? Come on! Have fun with it! Why are you running away...?

The truth is, it WILL grow back, but we have to get to that realization and acceptance point on our own. You can't help us get there and saying it actually makes the pain of the situation worse because we feel guilty and shallow for even caring about our stupid hair! I did anyway. The thing is, you just can't understand this unless you've done it. The only people who can say that are women who've been through it, and it's still hard to hear.

Now, if you've said any of these things to me or anyone else with cancer, please don't worry about it. We're not mad at you. I just want you to understand that you don't need to have handy a perky response that's gonna make everything peachy keen. That response DOESN'T exist. And we're NOT looking for you to solve it for us. As much as you'd like to, you just can't.

Side Note: You know how we give men such a hard time about trying to “fix” everything for us when we just want them to listen? We even get into groups and talk about this phenomenon, right? Newsflash: When you say these things, YOU are doing the same thing! Interesting…isn’t it?

So, here's what it comes down to, we (women with cancer) know that you don't have the answers because, we don't either. What we probably need is for you just to listen. If what we're describing is tough and you don't know what to say. It's OK to say, "That's rough/terrible/awful (insert ANY bad adjective here), I don't know what to say." Or, "Is there any way that I can help?" Or, "I can't imagine what that's like.” Or, “I'm praying for you." Or, maybe there ARE no words, maybe it's just a hug that we need. That's OK, too.

Monday, September 21, 2009

Why I Fight...

Some people will tell you that they're a lover not a fighter. I never was one of those people, and if I said it, it was a lie. Others are geared up to fight for anything at anytime for any reason. As long as they're fighting, it's good. That was me in my 20's usually after an incredible amount of Stoli or Patron, and I do mean an incredible amount. Some say that fighting is never the answer. They don't have sons to raise I'd guess... No matter, I am none of these people.

But, fighting looks different to me these days. First, I do a lot less of it than I used to because I don't like conflict. That said, I'm also not afraid of conflict. But, I prefer to get along and don't let small or petty things stick around in my mind to fester and grow. I've learned to forgive people for mistakes that I would have held on to before. And I've learned to ask for forgiveness when I am wrong. It happens regularly. Now, I'd just rather fight something than someone. That brings us to cancer, and I am ready for this fight.

I never thought I'd say this, but I can't wait until Friday. Three days to go...I expected to be anxious, concerned, scared even. I am NONE of those things. Not even close! Instead, I am clear about what's about to happen. My doctors and I are about to throw everything in the arsenal at the mere possibility that a cancer cell or two has managed to remain in my body. FOUR drugs at once. One to attack the cancer cell's DNA, one to mess up its mitosis, one to turn off the HER2 protein that makes it reproduce rapidly, and one to inhibit it being able to create a blood supply. It is time to fight. FINALLY!! 93 days after finding out about this cancer, I finally get to begin the fight! Chemo Round #1 is almost here.

Then I get to fight 8 days later when I go for my buzz cut on the 3rd. I'm actually not only no longer crying about that, I'm looking forward to it as well. I'm not sitting around waiting to lose something, anxious, wondering, hoping. Nope. My hair is supposed to go on our retreat. Now, how can I go off in the woods with Jesus worried that my hair is going to fall out and get anything out of the retreat? Besides, how traumatic would it be for the poor women who have to bunk with me. "Yeah, the retreat was great until one of the ladies in my cabin had all of her hair fall out in the middle of the night. We thought wild animals had been through the place!" That's no good for anyone.

Interestingly enough when I went for my chemo class, I mentioned that I was going to buzz it early. The other 3 women in the room audibly gasped and simultaneously said, "NO!! You don't want to do that! Hang on to it as long as you can!" Why? It's going to go anyway. Now it's just going on my terms. I will NOT sit around captive waiting for this to "happen to me" like a victim. Instead, every yucky thing that has to be done is one step closer to saying bye to cancer and starting the rest of my life. Besides, it's really is just hair. The cancer can't take it from me if I beat it to it.

I also fight with prayer. I have many others praying as well. If you're one of them, Thank you for praying for me. If not, please start now. Here's what I'm praying for: I'm praying that each drug as it flows through my body finds and executes it's task with 100% accuracy and efficacy. I pray for the protection of my heart, prevention of bleeding, and minimal neuropathy. (Those are the most serious possible short & long term side effects.) As for the nausea and vomiting? Child's play in comparison. Besides, I have a 20 year resume and a PhD for that including 2 near fatal bouts of e-coli poisoning. It can't be worse than that because it won't include acute kidney pain.

But all of this is How I Fight. I titled this entry Why I Fight. Why is so much more important than how. So here's why...

I fight for my unbelievably handsome baby who has suddenly become a real boy. He's a boy that told me for the 3rd time in 2 days how much he loves God and why. He's a boy I can help influence to become a man of character. We need men of character in this world! They are an endangered species. There is no more important reason to fight than to see him become that man.

I fight for my entire family, especially my mom and sister who love & need me. Without me, there would be no one in our family to scoop up the "insta-grievers" when things go wrong and hold it together while Dad figures out the logistics of how who gets where. I love my entire family incredibly. Incidentally, I'm also the kid that gets the "If we die on our vacation...here's where all the papers are" conversation every time Mom and Dad leave town. (I hate that conversation, but am crystal clear on where the papers are by now.)

But even more importantly, I fight for the life God created me to lead. It's a life I spent 18 years running from, only to hurt myself. I have no idea what that's going to look like, where it will take me, or or who's going on the journey with me. But, I know that if I can serve others, share my story, surrender and keep my focus on Him, He will take me there. And, it will be better than I could have ever imagined. Now tell me, how could I not be pumped up to fight?
 

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