zen.org Communal Weblog

March 9, 2011

Day 1 (B)

Filed under: — brendan @ 20:05 GMT

On Tuesday, I got the name of my competitor: Acute Myleoid Leukemia.

That day there were a bunch of things due to happen.  Aside from a bunch of blood tests, they needed to do a biopsy of my bone marrow to be able to properly identify which kind of leukemia I have.  They also said they had to put in a Hickman central line, instead of the normal cannula which was put in on Day 0.  This runs a catheter into a major vein with two dangling tubes hanging out of the chest so it’s simple for them to draw blood, add medicine, etc., instead of repeatedly pricking little spots all over the back of your hand.

Taking the blood samples was a real pain because my dehydration made it hard for the phlebotomist to actually get a usable vein.  She was also supposed to take a whole bunch of vials, but it wasn’t working out.  The nurses checked with the doctor, and they collectively decided to only do 2 or 3 of them in the morning, and wait until the central line was in since it’d be really simple to draw blood after that.

Doozy #1

The biopsy was by far my oddest experience, ever.  (Apparently most of the initial odd experiences will be centered on this particular day.)  They use the pelvic bone, and applied  a lot of local anaesthetic.  The doctor doing said it shouldn’t be a sharp pain, but I’d definitely feel something.  For an example, he said it’s similar to when a doctor pulls a tooth.

He kept loading anaesthetic until I confirmed that I didn’t feel anything.  To get at the bone marrow, they have to get through the skin layer and then use some monster of a needle (which thankfully I didn’t see) to penetrate the bone and get at the marrow.  I expected the marrow result to look something like breadcrumbs, for some reason.  But it was more like watered-down blood.

During the process, which took about 10-15 minutes, there were two instances where I could actually feel what must have been the flow of the marrow in the bone, or at least some impact on the nerves around the bone.  They weren’t expected, and quickly corrected, but wow did they happen.  Both of those times, as I told the doctor later, I felt what must have been the time you say “10” when asked, “on a scale of 0 to 10, with 0 being no pain and 10 being unbearable pain.”  Each was for less than a second, but it was like someone had put a blindfold over my eyes and could be aware of absolutely nothing, save what I was feeling in that instant.

Doozy #2: Central Line

I had a small break after the biopsy was done, then they rolled me (lying on my bed, making me feel like some spoiled celebrity who likes to stay in bed, always) to the Radiology department where they were to put in the Hickman central line.  It was a big operating room, and looked nice and clean and new—not the ceramic tile TV crap.  The central line gets put in through the neck right near your jugular, and comes out a little bit further down in your chest.

Wise-ass male me had to accept that the nurses had to shave away a bunch of chest hair in order to actually do it.  In retrospect, it was better—the number of times I’ve had sticky tape yanked off my arm/chest/tummy in the last few days makes me really happy that they’ve gotten rid of some of it.  (Yanking off those things always reminds me of just how much I’d never want to be a woman buying into the obsession of going for a waxing.  Jeeeeeezus that hurts.)

My head was tilted to the left so they could put it in the right side of my neck.  (Anne Rice moment.)  They draped a few sheets of some kind of paper over where I could see, letting me look out towards the side of the room but nowhere else.  Then came the anaesthetic, and a funny experience where the anaesthesiologist (?) began asking where I lived, how long I’ve lived in Ireland, etc etc.  I remember answering a couple of the questions—and then woke up out in their department’s open area back on my bed.  The skin around where they did this is still a bit sensitive, but that’ll go away after a couple more days.

All of this before lunch.

Every Tuesday, they give people four sanitary Q-Tips with plastic tubes to hold the result.  The intent is to test every patient in the hospital so they can catch any cross-infections or new infections which might be contageous.  With one, you swab in both of your nostrils.  With another, you swab both sides of your groin.  (Warning: I’m not gonna go too far, but I’m also not going to omit, either.)  The last two are two external rectal samples.  Every Tuesday.  I’ll be doing this for weeks, and I don’t think it’ll get any more comfortable. 😉

Giving It A Name

In the early afternoon, my doctor and her impressive team of like six people all appeared: the biopsy identified my disease as “acute myeloid leukemia”.  This is the better of the two choices for what I could have, and there is a 70% success rate for people going into remission after their first treatment.  (Being a fan of Dollhouse http://www.pressthebuttons.com/2009/05/would-you-like-a-treatment-anticipating-a-dollhouse-video-game.html , hearing things about “treatments” is really entertaining.)

Chemotherapy would start that night.  It’s not the getting-zapped-with-radiation I expected it would be.  Instead, it’s two sets of liquids.  The first, Daunorubicin, is in a big tube of what looks like Kool-Aid and inject it slowly through the central line.  It turns your pee red—they told me not to think I’m peeing blood, it’s just like food coloring.  There’s a second, Ara-C (Cyterabine), which is a small liquid bag which is put in over about 30 minutes via the normal IV line (like the one they use for Potassium Chloride and Sodium Chloride).

I’ll be getting the chemo for 10 days, then they wait for 2-3 weeks to make sure my blood cell counts are back up to where they should be.

There’s a possibility of nausea at some point in the next week or so, and within the next two weeks I’ll start losing my hair.  How ironic: on New Years Eve in 1999, I said I’d try a resolution to shave off my beard and see what it’d be like to live without one.  That lasted at most 3 days–apparently I looked too much like my brother, which just weirded her out. 😀  So this time I can’t back out; having had a beard for more than 20 years, I’ll probably have trouble recognizing myself.

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