CML - Day Two (The Hospital)

Who: Me
What: Cancer/Leukemia/CML
When: Day Two
Where: Hospital
Why: Good question.

I don't remember sleeping much that night.  For one thing, I just found out that I have cancer.  For two, they poked a hole in my neck - which is now stinging and feeling traumatized.  Third, the nurses come in every couple of hours to take my blood pressure, temperature, and measure my pee.  Oh yeah, that's right.  I have to pee into this little cup thingy inside the toilet, so they can measure my output.  If I'm being rational, it makes sense, as they are pumping saline into me like nobody's business, but I'm not being rational, and I resent the invasion.  Yeah, THIS is the thing that bothers me.  I'm in the hospital with cancer, and I'm pissed - pardon the pun - that they're monitoring my bathroom habits.  Makes perfect sense, right?

They've also started giving me a bunch of pills.  First and foremost - Gleevec - my new best friend.  My original nurse has to recuse herself from my care, as she is pregnant, and cannot physically handle the chemo medications.  Which is apparently what Gleevec is.  My new nurse has to put on the thick super heavy duty gloves before she tears open the little packets.  And I'm thinking, you can't touch it, but I'm supposed to put it in me?  Weird concept.  Gleevec, for those that don't know, (which I'm guessing, is pretty much anyone that doesn't have leukemia, or know someone with leukemia) is also known as Imatinib.

IMATINIB (i MAT in ib) is a chemotherapy drug. It targets a specific protein within cancer cells and stops the cancer cells from growing. It is used to treat certain leukemia's, myelodysplastic syndromes, and other cancers.

So this is chemotherapy.  They give me a "drug information" sheet about the Gleevec.  I see that the monthly cost is approximately $10,000.  (Getting sick is expensive.  I wouldn't recommend it.)  They're also giving me K-tabs (potassium), Allupurinol - for excessive uric acid (when the cells break down, they create uric acid), and stingy little shots in the belly (Lovenox) which is an anticoagulant, so that I don't get clots from being sedentary.  Twelve hours ago I wasn't sedentary, so its hard to believe that this is something that I need, but I don't want to risk it, so I lift up my gown, and let them poke me.  It stings, and then later it burns, and then even later, it bruises something fierce.  The TV flickers in the background, and I drift in and out of sleep a bit.

Around seven am the next morning - April 5th - my phone rings.  Which is weird, and I instinctively don't want to answer it.  I have an aversion to ringing phones.  They make me cringe.  But I ignore my instincts and answer.  "Good morning, would you like to place an order for breakfast?" Uh, really?  It's true.  They call me about an hour before every meal, and ask me what I would like.  The night before I was pretty sure that I had a good room, now I'm pretty sure I'm in a good hospital.  I order breakfast.  I want a bagel, but I don't think that I can chew it.  I'm afraid to move my mouth, my head too much.  My neck hole (which I should start calling my picc line, or my catheter because that's really, essentially what it is - a line used to obtain intravenous access into the body for treatment - is causing me pain and discomfort, and I'm not sure if I'm just being a baby about it, but I feel like I can't move my neck at all.  Scrambled eggs it is.

I eat some breakfast.  (They're monitoring that too.)  They have a little sheet over there by my door that they're writing everything down on.  I'd like to see it.  But I don't ask.  I don't think I'm supposed to want to.  This is when they wheel in the apheresis (leukapheresis) machine.  So here's the deal with leukapherisis:

Very high numbers of leukaemia cells in the blood may cause problems with normal circulation. If this happens, you need to have your blood cell count lowered quickly. Chemotherapy may not lower the number of blood cells until a few days after the first dose. So in the meantime, doctors can use leukapheresis.

Leukapheresis takes about 2 to 3 hours. You lie on a bed or reclining chair, with a tube into a vein in each arm. One tube removes blood and passes it into a machine that removes white blood cells, including the leukaemia cells. The rest of your blood cells and normal blood fluid (plasma) go back into your body through the tube in your other arm. If you have a central line, PICC line or portacath tube in place, your doctor may use this instead of putting tubes into veins in both arms.

The treatment lowers the number of white blood cells straight away. This only lasts for a short time, but it can help until chemotherapy has a chance to work.

Its weird the way you feel when they suck the blood from your body, and then pump in back in.  Cold.  I was much colder than I thought I would be.  I can't see it, because I can't really move my neck, but there is a big bag of blood, with yellowish white floating on top - my abnormal white blood cells - that they are removing from my body.  They come in and take blood right after they finish the procedure, to see if my count is going down.  The nurse comes in with my next round of medications, and I swallow them down.  I'm feeling worn out and dirty.  Its time to get up and moving.


I'm pretty restricted.  I have to call the nurse in to unplug the pump on my iv every time I have to get up to use the restroom.  I won't be making any quick getaways.  I have her unplug me, and try to do a quick wash up at the sink.  I'm not sure if it's the leukapheresis or the Gleevec, but all of a sudden the nausea hits.  My nurse is remaking my bed while I'm up, and I tell her, "I think I need to throw up."  And she tells me, "Oh you just go ahead and do what you need to do." Which kind of baffles me.  She's still tidying up behind me.  I can't help throwing up a little, but I do it in the sink, and I try to clean up after myself, but I'm sick and exhausted, and pretty bummed that I just puked up my $300 pill.  I'm hot and sweaty - which kinda defeats the purpose of getting up and cleaning up - and I get back into bed feeling a little bit defeated.

My blood count comes back, and my white's (my white blood cell count) are down a bit.  The test from last night had me admitted to the hospital with a count of 487000.  I'm down to 465000.

My family shows up.  Everyone has a slightly panicked expression on their face, until they see me.  I get just a glimpse of what they're feeling before they put on their happy faces.  I get everyone today.  Aunts and uncles.  My mom and Keith.  And my sister.  She comes in brimming with questions for me, and tells me matter-of-factly all about CML.

Leukemia is a cancer of the blood. Leukemia begins when normal blood cells change and grow uncontrollably. Chronic myeloid leukemia (CML) is a cancer of the blood-forming cells, called myeloid cells, found in the bone marrow (the spongy, red tissue in the inner part of large bones). CML most often causes an increase in the number of white blood cells (neutrophils or granulocytes that normally fight infection). It is also sometimes called chronic granulocytic, chronic myelocytic, or chronic myelogenous leukemia. About 9% of people with leukemia have CML.

People with CML have a genetic mutation (change) in their bone marrow cells that they develop from damage that occurs by chance after they are born and there is no risk of passing on the gene to their children. This specific mutation is called a translocation, which means that part of one chromosome (a long strand of genes) breaks off and reattaches to another chromosome. In CML, part of chromosome 9 breaks off and bonds to a section of chromosome 22, resulting in what is called the Philadelphia chromosome or Ph chromosome. The translocation t(9;22) causes two genes called BCR and ABL to become one fusion gene called BCR-ABL. It is found only in the blood-forming cells, not in other organs of the body. The BCR-ABL gene causes myeloid cells to make an abnormal enzyme that allows white blood cells to grow out of control.

They haven't done a bone marrow aspiration, but she tells me that she's sure she's a match, and she plans on getting tested to be a donor.  And I'm thinking cart before the horse, here.  They haven't even mentioned testing my bone marrow yet, I don't think they need to start testing yours.  Shes over there on her phone, reading away, telling me all about chromosomes 9 and 22, and how they went haywire.  What I want to know is not really the what of it right now.  I don't care which chromosomes went crazy, I want to know why.  Why?  That's the part that just doesn't make sense to me.

Today I feel like shit.  I feel traumatized.  I feel like I should maybe be in the hospital.  They come in and tell me that I need a blood transfusion.  Two units.  Two units means two bags of blood, apparently.  I get sweaty and nauseous again while I'm getting the transfusions.  I'm irritated with this whole situation.  And I'm snappy and harsh.  I can't reach for a glass of water without three other hands reaching out to help me.  Which is the most amazing thing.  But it makes me feel irritated and helpless, and I vent my frustrations on my hapless family.  Keith tells me they must be giving me "bitch blood".  And he's right.  I am not nice right now.  I feel frustrated.  I feel more sick now that I'm in the hospital getting treated than I did before I knew I had cancer.

Everyone gives me a breather.  They all need to eat.  They've been sitting watching me for the past couple hours, and quite frankly, I'm not much to look at at the moment.  Entertaining is a bit exhausting.  Everyone leaves, and this is when the oncologist comes in.  He's older and jovial, and I like him immediately.  My blood tests have come back positive for the Philadelphia Chromosome, which confirms the diagnosis of Chronic Myeloid Leukemia.  He tells me that when it comes to cancer, I chose well, as CML is treatable.  Survivable.  He feels my spleen, and is impressed with the sheer size of it.  It dominates my left upper abdomen, and has spread out across to the mid right, as well.  He tells me that they plan on continuing leukapheresis until my whites are below 100000, and that the Gleevec is a new permanent part of my life - a medication that I will be taking forever.  I like him.  I wonder if he'll be my permanent physician?

I've had cancer now for a full 24 hours, and everyone has leapt into action.  I'm not sure how these things usually go, but I feel like I'm being well taken care of.  From diagnosis to treatment in less than a full day.  I think I maybe got lucky.  As my family files back in, I feel pretty lucky.

CML - Day One (Diagnosis Continued)

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.