zen.org Communal Weblog

(The first part is a little more serious than previous posts, but not serious about cancer—serious about people.)

There are nine beds on this side of the ward: groups of 2, 3, 2, and a pair of “isolation” rooms with single beds used if people are infected with something or, equally, to protect them from catching anything.  Folks mostly keep to themselves; depending on a lot of things including how they feel, what their mood is, and their general personality, some may choose to engage in conversation with each other.

In my stay here since March 7th, there have been maybe four different patients who I’ve talked with beyond “hi” or “good morning” or brief chatty encounters.  Personalities sometimes match enough to find you comfortable chatting with each other.  I’ve made at least one acquaintance here with whom I’d like to stay in touch after we’re both back in our regular lives, so to speak.

Other times, it’s not so comfortable.  There are patients who see everyone around them as a pseudo-counselor.  I am willing to endorse talking about your problems as much as the next person.  But sometimes it’s difficult to listen to someone else attempt to wax poetic about how much they miss home, the wife, the kids, whatever.  I already know most of us feel that way—hell, no one here (whom I’ve met thus far, anyway) would choose to be here instead of being home.  And try as I might, sometimes you just can’t get them to shut up.

So you make up reasons for the conversation to stop.  Gotta go to the bathroom.  Need to try to take a nap.  Going to call somebody somewhere about something.  Or, you work up the guts to be up-front and say you don’t want to talk about that particular topic (home/family/cancer/feeling ill/you-name-it), and see how they take it.  I’ve still not managed to pull this one off, though there’s one particular person I’m saving it for, just in case they’re in a chatty mood for longer than I can let go by less affected.

You see, everyone here is different.  Not just different in the normal sense: we are each unique in our condition.  No two people have the same problems, the same state as the other, even if the sheet says you both have been diagnosed with the same disease.  There’s a mix of all sorts of these here, every day, whether patients stay for a month or just a few days.

Because they’re not the same, their experiences will be equally wide and varied.  One person can’t eat, another asks for enough food for two people.  My legs were hurting and rashy for a day or two; someone else will have a similar rash, but theirs will be some other part of the body with a cause you’ll never experience.

Depending on the person, this bit of comparison can be interesting—for a few minutes, then you move on—or it can actually undermine your own mind-space, your own feeling of where you are in accepting what’s going on.  I’ve now got one example of someone who explains what could happen next in what I’m encountering.  By sheer force of will and determination, I’ve been able to relay my brain in a way which makes this mostly wash off my shoulders.

The most recent conversation was a bit more difficult to do that, though.  I was able to seek advice from the clinical liaison nurse (I’ve misstated their title because they tend to go back and forth between two different ones, but this will do).  She’s the one who encouraged me to be up-front and tell the person I don’t want to talk about this with them, since we’re here for distinctly separate reasons, and I’d like to talk about something else.  She’s also offered to talk to teh other person  if I find this approach doesn’t work out.

Usually in life, you can get away from unending or uncomfortable conversation (particularly if you’re a parent, and even better if it’s a baby!).  It’s harder in this setting where you’ve got nowhere to use as your escape route.  Instead, you’ve got to use your head.

My head’s learning, albeit slowly because I need to experience things in order to figure out how to deal with some of them.  One of life’s unending constants.

Load ‘im up!

I’m getting two blood transfusions today because my red blood cell count (RCC) is still heading down (like the others).  Specifically,

* Red Cell Count (RCC) is 8.5 (corrected on April 22nd from low number that was incorrect), normal range 4.5-5.5 (I’m due 2 bags of blood transfusions this afternoon/eve);

* White Cell Count (WCC) is 0.2, normal range is 3.5-11 (bone marrow does this job, it’ll be a good 1-2+ weeks before these move near where they should be);

* Platelets count is 68, normal range is 150-400 (but they’re not inclined to add via a bag of platelets until it reaches around 20, but there’s still a chance they’ll reach it);

* Neutrophils is 0.2, normal range is 2-8 (no bags, this is what the growth stimulation hormone shots are to help with)

They were late getting to the hospital, so the first bag started around 6pm and will take four hours.  Then the second one, finishing around 2am if I’m lucky.  It’d sure be handy if the beep-beep-beep of the pump used to control the blood flow went off at the same time they’d be waking me up to do my obs.

This picture shows the sort of machine they use to get all of the obs measurements (from the top: pulse, blood oxygen, BP (maximum—systolic—and minimum—diastolic—pressure), and the bottom one is MAP mean arterial pressure (MAP), a number which increases as the cuff on my arm gets tighter.

Energy has been decent, particularly for most of the morning.   As a great change from playing Sudoku, I spent some time (like some other recent mornings) hacking away on what I’m usually doing for work (GNU development tools).  Funny how you miss things like this.

Later in the day, Elana and I got to have lunch together—not downstairs this time—and spend some time together before she had to go back to take Patrick to a dentist appointment.  My afternoon was spent reading more of “Heat Wave” by the pseudo-author Richard Castle, talking with another patient about random crap of no import (fine), and a 40-minute nap to make up for my morning hacking.

I’m going to Skype with E in a bit, then read til I crash out.

Hello, Mr. Keohe; want some Guiness?

I’ve never seen this spelling of my last name (er, second name) before:

and love, love it when I see stupid spelling errors in public places…as Elana can testify, I’m absolutely addicted to getting pictures of these sorts of things:

Pity you  don’t get—months from now—a free pint of Guinness for helping to fix misrepresentations of their fine, fine product…