Monday, February 7, 2011

Sloan Kettering

So Monday Jan 24, we wake up at the crack of dawn. I have only vague memories of the trip to and from SI honestly. I remember getting there too early and just sitting in the waiting room. I couldn't bring myself to talk for a while, but then the wait was so long I just had to. They took blood, blood pressure, weight. At that point I lost about 16 pounds since Thanksgiving. I hadn't been trying to diet, but my appetite was lighter and I did feel that if I ate less I coughed less. But it hadn't dawned on me that I was losing real weight. I am now down 20, but I'm not worried, I don't think it's the cancer, I think it's my appetite and that I'm eating better than I normally do. But the phlebotanist is so concerned, she's commented on it twice. She's a gorgeous little thing and I keep looking at her like, honey really, let's be honest. I have weight to lose babe.

But again, I'm getting ahead of myself. They finally get me a room, I'm in a gown and we're just waiting to hear it all. This young doc comes in, I wish I'd never met her, she is SO young and needs to learn a lot about giving bad news. Or maybe to understand what bad news is, she was a touch geeky, so I think she was interpretting the results from a scientific perspective without realizing she was talking about my life.

She started by saying that the kind I have (honestly I have 3 different names for it, I have no idea which one it technically is) is growing slowly along the lower bronchial walls of my left lung. Why she thought she should start this way I don't know. I saw the shoulders of everyone in the room relax, we thought she was telling us it hadn't spread widely. She was SO not telling us that. This was important because there's a genetic trait that they are hoping (I stress hoping) that this cancer has. If it does there's a promising drug they can add to my chemo. But yeah she started with a positive. Great move. That so didn't set us up for a major downer, nope not at all.

Then there's the pet scan results, which she oddly tells me to take with a grain of salt. Meaning you don't really know if something on a scan is cancer until you put a needle in it. Her words. I'll explain why in a minute but you'll be amazed that punching her never crossed my mind. So it's ALL over my right lung, which is ground zero. It's creeping along the bottom of my left. There are spots in my spine that she wasn't too concerned with apparently. It's in my liver, nice size too like 2" by 2" so it's like the tumor equivalent of the epcot center ball. And then there's my right arm. And she looked at me to say, "have you had pain there?" OMG that was mind blowing because I have. I had 3 incidents, each lasting 2 days each. I could not rotate my arm. I could literally not get dressed. I thought I pulled my bicep. Who the fuck thinks, my arm hurts must be incurable lung cancer. Duh!

And then she says, oh and then there's the brain MRI. At this point I'm like, I gotta catch a break right? Oh no she precedes to draw a picture of my brain so she can put pen dots on it (I lost count at 5, but according to the report it looks like there's 7). You never want a doctor drawing a picture of your brain so they can put dots on it. And she was quite happy to draw it. I was like, so how do we confirm that it's cancer, you know harkening back to the "grain of salt" reference. And she says, oh there's no need to confirm, it's the cancer. So I'm like, what about that you need to put a needle in it thing? And she points out that there like 2 tiny spots in my right lung that lit up on the pet scan that turned out not to be cancer. That's it folks. That the grain of salt, there's a gagillion spots of cancer, but not those 2. Break out the fucking champagne!!!

Then she says what I have decided are among the worst words in the English Language "You'll never be cancer free" and "we can extend your life". But again, let us all remember, she chose to start this conversation off with a positive.

I saw John in the corner of my eye just deflate. He was so sure they'd say I'd be cancer free by Christmas. He was crushed, he just kept asking questions about clinicial trials, experimental treatments, etc... He was actually interupting me at one point, that's how frantic he was. (BTW turns out brain mets exclude you from clinicial trials, ain't that a kick in the ass?)

All I wanted to know was, what does extend life mean. I wanted numbers. My family and the doctors were not happy that I had these questions. But how can you say you're going to "extend my life" and then not tell me what the fuck that means. Are we talking about months? years? decades?

I fought like hell to bring my daughter into this world are you telling me she might not remember who I am? WTF!?!!!

The young doc said, there's no answer to that question. So I asked for an average and she refused to answer. She said you're not a number. That is probably the only right thing she said. But dude, I haven't never wanted an answer so badly in my life. I felt like the gods owed me. I'm over that now, but it stayed with me for days.

John and I came away from the apt on the same page. For once. This was what I feared, it's in a lot places. I can't say everywhere, it could truly be worse. But it's in my brain, exactly what I was terrified of. But we both got it. Yes we fight, we fight like hell, yes, miracles do happen. But this shit is real.

My parents were def in the you'll beat this and live forever mode. I actually don't really know where they are with this emotionally but I do know that they are worried I'm not being positive enough. That's a tough call because in the beginning I wasn't. But then again I started chemo within a week of my diagnosis, so that's not nearly enough time to process this emotinally AND I had fucking chemo brain.

Plus there's this other thing. You know I have one of the breast cancer genes and I've known my status for 5+ years. I've had 5+ years to fear chemo. I mean have built it up in my head to be a horrifying experience (and I acknowledge for some people it truly is). So I had this whole mental thing too.

But chemo has been very kind to me. I'm just fuzzy, tired and distracted. But honestly, it was nothing I built it up to be. Now that is because of the kind of chemo I'm on, not because I'm some herculian pillar of strength. It's dumb luck that lung cancer chemo falls short of the more classic side effects. No nausea for me. And if I lose any hair it won't tall out for a couple of more weeks. And it might not. Though I'm ok with the hair thing.

Now chemo is cumulative so I don't if I'll still be giving it glowing reviews when we get to thru more and more rounds. But it's made a huge difference in my demeaner. I feel like I can do this. I feel like I can face this more directly. I feel like I can take more control of my care. I wasn't there for a long time, maybe too long? But I'm chosing to be kind to myself and not beat myself for wanting to be a patient and wanting others to think for me for a while. But I did burden my family with that and for that I'm sorry.

But I'm in a great place now, I'm psyched for chemo 2. And I'm ready to honor every day.

I have an army behind me and I move forward on the power of that love and support.


  1. I hope you know that this blog feels like a supreme act of kindness to those who love you, Jaime.

  2. Thank you Mike. All I know is I needed to get this out and it feels good. I hate dragging everyone with me, but it is what it is as they say.