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.