I was diagnosed with Chronic Myelogenous Leukemia 49 days ago. It still feels a little bit surreal. A cancer diagnosis is a very surreal kind of thing. Especially for a healthy (well, I thought I was healthy...) thirty-three year old woman. (I always kind of shy away from calling myself a woman. I suppose I am a woman, and have been for quite awhile, here, but in my heart of hearts, I think of myself as a girl. There's something easier about being a girl, I think. Something less culpable.)
So anyway, here I am, trudging along, and *bam* right in the middle of my forehead. It all went down a little something like this...
I'm laying in bed on my back, and I notice that one side of my stomach is harder and fatter than the other. Yes fatter. There is no better way to say it - dresses that I wore 5 years ago no longer fit around my ribcage, and my waist measurement is advancing alarmingly. I look down and the left side rises up like a little mountain. And I think, "Oh god, is this what happens in your thirties? Areas spread and widen, and there's not much of a damn thing you can do about it?" So I call my boyfriend in for a second opinion, and after much pulling and prodding and similar comparison to his flawless and beautifully symmetrical abdomen we determine, that no, this is not normal. But not really much cause for alarm. I look it up on WebMd, and it tells me that I could have a benign lipoma. For some reason, WebMd is very pointed in telling me,
"Lipomas occur in other animals, too. They most often affect older, overweight female dogs."
I do not appreciate the comparison, thank you very much.
So I make a Dr's appointment. I've been meaning to make one anyway, to re-establish care with my primary physician who I have not seen in over 5 years. In the mean time I worry about my bulge and scare the holy hell out of myself with Internet self diagnosis for about a month.
My doctor is jovial, and friendly, tells me that I have lost a lot of weight (which I actually do appreciate) asks me routine questions, and then as he is gathering up his file, getting ready not to see me for another six months, he asks me, "So is there anything that you wanted to ask about? Any concerns?"
And me. Ahem. "Yes, just this one." So I tell him about my fat stomach, and he has me lay back on the crinkly paper of the examination table and does some pulling and prodding of his own. He thinks that I have a swollen spleen and orders 19 different blood tests (yes, I counted all of the little boxes that he marked...there were some that didn't even have a box and got written in), and schedules me for an ultrasound in three weeks. And I think to myself, "Three weeks? It can't be serious if I'm waiting three weeks for final diagnosis." So I take my lab sheet, and my ultrasound appointment reminder, and I leave, and I feel slightly better, because if he's not going to worry, then neither am I!
Except i do. I worry. And I speculate. And I nearly drive myself crazy. I figure I have mono. At thirty three. The kissing disease at thirty three. (I always was a late bloomer.) And then my tongue turns white, and I just about lose my mind. The only thing that I think of that this can be is thrush. (Which is really gross to me - a yeast infection on my tongue? Ewww.) And combined with my large spleen I google that shit and start thinking that I have HIV. I don't know why I'm thinking that whatever I have has to have something to do with sexual activity, but these are the things that I am alternatively thinking - I'm either the socially stunted thirty something with a teenagers kissing disease, or I'm the stupid slut that's gone and gotten herself an incurable fatal disease. From one end of the spectrum to the other.
Meanwhile...I haven't done anything pro-active that might actually help to diagnose me, like, say, go and have my blood tests done, but having my tongue turn white is the last straw. I call my Dr and make a same day appointment.
The speculating is the worst thing. I'm telling you, it's enough to make you sick, if you're not sick already. So I slink in there, defeated, really honestly feeling that this is the result of something that I've done wrong, when my physician tells me, bless him, that I do not have thrush, that it is a naturally occurring flora, and to try not to worry, but to make sure and have my blood tests done - which I do.
I'm feeling better. My doctor told me not to worry. He thinks I'm healthy, and I figure he's a pretty good judge of that sort of thing. So I try to go back to normal - back to work - I've been missing way too much work due to health issues. I'm determined to put this out of my mind until my ultra sound appointment, which is still ten days away. That plan pretty much goes out the window when later that day I get a call from the nurse telling me that I need to come back in for another blood test. That my white blood cell count was "abnormal". And that's all she said. Abnormal. Abnormally high? Abnormally low? Abnormal, whichever way you look at it is not good. I decide to go in early the next morning.
When I tell my family they all have widely different reactions. My mom brushes it off as insignificant. She is convinced that my spleen is just acting out for no good reason. My boyfriend is worried, and wants answers to questions that I forgot to ask. My sister is losing her ever-loving mind, and decides that I have leukemia. Really? Leukemia? Don't only children and old people get leukemia? And somehow in the midst of all of this I have found a state of calm. Que sera sera.
I wake up the next morning feeling wretched. Everything is a struggle. But I try to keep my routine. I walk my sister's dog his requisite mile. I get dressed. I have to rest while I'm doing it. I literally have to lean over and put my head down on the bed while I'm doing it, but I manage it. I pack a lunch and head out. I have a bit of a drive. The nearest lab is almost an hour away from where I live, and I have to stop on the side of the road to rest a couple of times on my way there. I make a deal with myself. Once I make it, if I still feel like shit, I can call in to work and tell them I'm going to be late, and sleep in the parking lot for an hour. (This is me cutting myself a little slack.)
Eventually, I do make it, and when I go and pick up my lab sheet, the cat is pretty much let out of the bag. The notes section of it says "Leukemia/Lymphoma Screening". And still I'm calm. Maybe it's because I'm feeling so miserable, or maybe it's because deep down I don't really believe it. Until...a couple hours later, when the doctor calls me personally to tell me that a hematologist/oncologist will be contacting me to make an appointment. He believes that I may have leukemia.
And that's when shit gets crazy.
I didn't realize it was such a long story. More to come.
