Like yesterday. Yesterday was one of those days. I found out that because I have metastatic breast cancer, I can no longer be an organ donor. I have been an organ donor since the day I first got my drivers license. I was proud of this fact. I didn't plan on handing over my organs, but if I died in a fiery accident, I knew my body would do some good for someone else. But no more. Yesterday, I contacted the DC Department of Motor Vehicle and officially removed myself from the organ donor list.
That was hard. It was hard because it meant I was sick. It was hard because it had a finality. It was just plain hard.
But did I leave that moment alone? No. I had to, on top of my physical exhaustion and difficult emotions, look up survival statistics for metastatic breast cancer. They're not good. My own oncologist told me not to look these up. The nurse practitioner told me not to look these up, explaining that the numbers have changed greatly even just recently and that no one is a statistic. But I had to go and look them up. Silly me.
So that set me off on a really horrible, horribly rotten, I'm gonna die kind of day.
After a nap and a visit from my dear friend Ingrid, I finally started feeling better (it's incredible what a hug can do). But before that, I had the word hospice in my mind (only once) and actually made a stupid comment about how I wouldn't be around to have to empty the dishwasher anymore (this was related to me commenting on how much I hated emptying the dishwasher, so maybe in a way this was a positive thought). I was convinced that my family thought I was going to die and that everyone around me thought I was going to die. Hey, the pity party comes with the territory folks. At least once a week, on my most exhausted day, I am likely to have one.
But then this is what happened next. I got angry. I got angry at the co-workers who pretend nothing is wrong, yet stare at my wig (I wore it for the first time yesterday). I got angry at the few folks who haven't called me most likely because they have too much to deal with, but still it pisses me off. I pissed and moaned with my friend Mary Rose over the phone and the anger helped me to start feeling better. Hey, I don't care if, according to Ms. Kubler-Ross, anger is only one step past denial and so not close to acceptance. It felt good to get pissed. I'm frankly pissed about getting breast cancer and being so special it swept out the door, past my non-enlarged lymph nodes, and straight into my liver (poor Beatrice).
And then I picked up Bernie Siegel's book Love, Medicine and Miracles for another read. Siegel refers to the group of sick people who are waiting for the long-term effects and inevitable death as the Bleak Brigade. I sure as heck don't want to be a part of the Bleak Brigade. In fact, I am not a member of the Bleak Brigade. I am what he refers to as an Exceptional Patient, the one who insists on being part of the treatment and cure and is seen as downright difficult. Or what I call the Uppity Cancer Patient.
I am downright uppity. I will not agree to having treatment or tests put off (I will schedule them myself, if I need to, damnit). I will not immediately say yes to a treatment until I understand and agree with that treatment. I will not let a nurse practitioner send me off to a dermatologist two weeks after the steroid-induced acne has engulfed my face. This would be yet another appointment I do not have energy for and it's just acne, dangit. Call something in for me. And if you won't do that, I'll call my internist who will call it in for me. And then I'll tell you what I did and why and illustrate to you why you do not exhaust a chemo patient for plain old acne.
Because I am difficult. I am uppity. And I am going to live. Damnit.
I think people just aren't sure what to say. I'm sure they're all feeling for you, but it's hard to know how to respond. And they don't know how you *want* them to respond. When my co-worker was going through chemo, she didn't want to talk about it at all - but other people do. And the oncologist is right - they've made huge strides in cancer treatments just in the last few years. I don't know what the current survival rates are for metastic breast cancer, but there have always been cancer survivors, even when the odds are weak. My cat was given 10 months when she was diagnosed with large cell lymphoma, and it's been almost 2.5 years (and that's quite a bit for a cat - probably the equivalent of 10 or more years for a human). She ain't going anywhere any time soon. There is *always* hope.
ReplyDeleteTrish, I'm talking about the few who pretend nothing is going on at all. They don't say a word about it, like I don't have cancer. That's just silly.
DeleteI agree with Trish. People just don't know what to say so they act like nothing is going on. That is their own insecurities. They feel lucky it's not them but don't want you to know they feel that way. You need to let them know, in your own special way, say like getting up on a desk and yelling "Hell Yeah, I have cancer now, but soon I won't." Then they will know that 1-Yes you do have cancer, 2-you are not scared to talk about it and 3- you will be a lot of things, but ignored is not one of them (this is my personal favorite.) And as far as those statistics are concerned, let's concentrate on the survival side of the graph. Go get 'em.......
ReplyDeleteI love it that you are uppity. And difficult. There are too many people out there that won't stand up and take control of their lives, that are content to be herded this way or that. Yes you have cancer, but you aren't cowering from it, letting it control you, you're still out there making your own decisions on how to deal with it.
ReplyDeleteAnd it's okay to be mad. My parents were always very cool about 'letting me be mad'. Dad always told me that if he was trying to hard to cheer me up, to just say 'I wanna be mad right now!', and he'd accept it, as would my mom, and back away until rational Leah came back around. Cancer sucks, its okay to be upset. And throw yourself a pity party (thurs, noon to ?). Hell, yesterday I felt so sorry for myself over minor things that I was hard to be around, and I KNOW there are people out there dealing with way more. But that's okay. You're a strong lady, and I know those pity parties won't last long. Google whatever you want - knowledge is power. But that nurse is right - you are not a statistic. You are a Fariss dammit! When life hands us lemons, we squeeze the juice in its face! (I know, 'lemons', tired expression, gimme a break;) I'll say it again though, I think you are a total badass, and when you conquer this thing you'll be on some Samuel L Jackson badassery level. You rock that wig and them fuzzy socks and keep it movin.
Be uppity. Way go to.
ReplyDelete