So where were we? Ah, yes. I just found out I may have leukemia. And I'm thinking that a doctor doesn't tell you that "You may have leukemia" unless he's pretty darn sure that you have leukemia. At least, I hope not.
I'm at work when I get this leukemia call. Slogging away, thinking about the weekend, and all of a sudden I have cancer. It's such a weird thing, the way I find out; with a phone call. Casual, almost. Leukemia. An oncologist will be contacting you. Have a great weekend. Really? Is that really how it goes? I always pictured it like movies portray it. A private office visit. You're told to bring a loved one. Colored brochures titled "Coping with Cancer". Quiet weeping. That sort of thing. Definitely a little more to-do.
So I get this call, and I decide that it's probably okay for me to leave work early, considering the circumstances. (Yeah, this is me cutting myself a little slack again.) I have some phone calls of my own to make. I call my boyfriend (Keith) first, and I can hear in his voice that he's not okay. He's less okay than I am right now, and tells me to come home. (I'm on my way.) My Mom is in denial. I tell her "The doctor called, and said that he believes that I have leukemia," and she says, "And?" Silence on my part. I'm not sure how to respond to that. After a second, "An oncologist will be contacting me." And then, its like she didn't hear me because she tells me, "Sometimes an enlarged spleen can mean nothing at all." And I think, "Um, no," but I say nothing, because she is not making this easy on me, and quite frankly, I don't know what to say to make it better for her. My sister starts bawling - sobbing uncontrollably - because it's her worst fear confirmed. (She was right, damn it.) I get home and Keith keeps looking at me like I'm dying. I can't be dying, can I? I don't feel like I'm dying.
And we decide that whatever must be done will be done! And we're starting to prepare for battle when I get another phone call. It's my primary physician's nurse. She tells me that the oncologist on-call took a look at my lab test, and wants me to come in to the emergency room. Immediately. And pack a bag. (And pack a bag? A bag of what?) When she tells me this I laugh. I don't know why. Because it all seems so fucking ridiculous. I don't feel incapacitated in any way, so why in the world would I need to go to the Emergency Room? With a packed bag?
And I can tell that the people in Emergency feel the same way. Why exactly are you here? They keep asking, looking confused. They weigh me (without me knowing it, in a special "weigh you while you're sitting there" chair) and I'm 151 which I'm okay with, and they take my temperature - a little high 99.something - and my blood pressure - which is normal - and stick me in this little triage room. Someone comes to take my history. Again, "why are you here" questions. And we sit there, and Keith holds my hand, and finally, with a kid that smashed his fingers crying in the background, a doctor with bright blue eyes comes over, and says, "They called about you. Well, you know why you're here right? Didn't someone tell you? You have leukemia." Just like that. And yes, so I knew that I "may have leukemia", and maybe it's just semantics, but it was a little indelicately done. It's a good thing I'm not delicate.
They take me out of my little cubby-hole - deeper into the depths of the hospital, in a kind of holding tank room with a couple of other patients either waiting to be seen and discharged, or waiting to be admitted; waiting for a room, and I wonder "Which one am I?" I'm the one that's going to be here for awhile. And that's when the bevy of tests begins. I can't remember which is first. I'm thinking the blood test. Three or four vials again. (This is my second time today. My blood doesn't want to come out anymore. It wants to stay in, where it's needed.) Then I get an IV. I pretty much just roll with it. What else can I do? This is when my mom arrives. She's wearing her sunglasses indoors. Not because she's one of those glamorous women that doesn't want people to know she's been crying, but because they're readers too, and she prefers them to all of her other reading glasses. Keith teases her, calling her "Ray Charles." She pretty much just rolls with it. (This must be where I got it from.)
So we're all sitting there, and the emergency room doctor comes over to talk with us. He tells me that my white blood cell count was pretty high, it looks like I have something called Chronic Myeloid Leukemia, and that I'm going to need a procedure that they call "leukopheresis". And here is where my mom, bless her heart says, "No no, wait a minute. She went to Mexico a few months ago, and she drank the water." And she is dead serious. She is holding out hope that all of this - my spleen, my night sweats, my fever, my elevated white count - is caused by a Mexican parasite. And the doctor says, "No, I'm sorry. White blood cell counts that high can't be caused by a parasite." "How high?" I ask, and I'm curious, how high is high? Normal white blood cell counts range from 4,500 to 11,000. I find out that mine is 516,000. Half a million when it should be ten thousand? Yeah. That's high. Dangerously high, apparently.
"What's the deal with this whole lekopheresis thing?" I have to ask again. I haven't been listening well. And he tells me, and it sounds awful. What the doctor wants to do is put a line in - a tube - so that they can suck the blood out of my body, spin out the white blood cells, and put it back in. All of this happens simultaneously. There are three places that they can put a line in. In your neck, below your clavicle, or in your inner thigh. None sound good. The doctor, who I will be hereafter referring to as "The Tiger" (his first name is Tigre, or something, and the nurses jokingly refer to him as "Tiger") is pushing for the neck. There is a lesser chance of complications and infection if they go in through the neck. And I must be crazy, because I have a really nice neck - thin and shapely - and I sign the papers and agree to let him put a hole in it. The rest of my time before the neck hole is kind of a whirl. Someone brings me a hospital gown. I guess it's official now. I have CT scan. It's unremarkable. I have a chest x-ray. Urine test. And finally they find a room for me with good enough light to cut a hole in some one's neck, in Telemetry.
The Tiger looks pumped. He looks like he's been waiting all day to cut a hole in someone, and it just happens to be my lucky day. The kind of lucky day where you find out you have leukemia, and have to have a hole cut in your neck. I think maybe a colonic would be the only thing that could make this day even better. (Sarcasm. And I'm not having one of those. That is an out hole.) Someone hands me a mask to wear, and I say, "Really? Am I contagious? Are you afraid I'm going to give someone the cancer?" (And this is how I refer to it, when talking to people, "The Cancer". It seems fitting.) And they look at me sadly, and tell me that they're more concerned with me catching something from someone else. Which shuts me up for the moment.
My poor family. They're with me, and we all go in the elevator that has a door that closes on one side, and opens on the other. By this time, someone has made the determination that I'm no longer able to walk, and I get wheeled on my bed to my new room. Which is small and private, and has it's own bathroom, so it seems fine with me. I'm not a hospital room expert, but I think I've got a good one. At this point, another someone brings in an ultra sound machine so they can see where to put the line in my neck. They tent my face, give me a couple of shots in the neck, and apparently it's go time. My family is outside fretting somewhere. I imagine my mom outside, wearing her sunglasses at night, and my boyfriend chain smoking, and spitting - he spits a lot when something is bothering him - bouncing from foot to foot. Holding it together. For me. But just barely. And here I am, with a big blue cloth over my head, holding it together for them. But just barely.
I feel it when he cuts in, and I know there is blood, but I can't see it, and the Tiger asks me, "How does that feel?" And I say, "Well it doesn't feel good." And he says something about being able to feel pain lets me know I'm alive. And I think, c'mon Tiger, isn't that a little cliche? And I feel something funny in my chest. A flutter. It's tiny, and after a second it's over, and I hear the nurse tell Tiger about it, but he doesn't seem worried. A couple more minutes, and he's all done, and I have this unwieldy "dongle" sticking out of the right side of my neck. I'm thinking it's the ends of the tubes all wrapped up to prevent infection, but it's uncomfortable. It sicks out of the middle of my neck and hangs down almost to my shoulder. I feel like I can barely move. Did you know that you use the muscles in your neck to help you sit up? I didn't. I do now.
My mom and boyfriend make their way back in. Keith asks me if they hurt me, and I tell him that I'm okay. It all runs together from there. I know that my mom leaves, and tells me she'll be back tomorrow afternoon. Its harder to get Keith to leave. Its harder to let him. He tells me later that he's terrified to leave, because he's afraid something will happen to me. He's afraid I'll die. Everyone that he knows that's gone into the hospital with cancer never came home again. But he doesn't say that then, and I don't let him think it. We'll get through this, and I'll be okay. He needs to take care of himself so that he can take care of me. And that finally convinces him that he can go. I'm so tired, and I usually sleep on my stomach. I'm hooked up to a heart monitor, have an IV in one arm, and a tube sticking out of my neck. And I have cancer. I won't be getting much sleep tonight.
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