Hospital recap

I suppose it's starting to get far enough in the past that if there's any things I want to comment about my hospital stay, I ought to do it before I forget about them.

I guess the best thing I can say is that it was short.  Shorter than expected.  As much as I guess it wasn't so bad as far as hospital stays go (thankfully I have very little experience), it's hard to say too much good about any hospital stay.

Overall I think I got fine medical care, but I have a lot of little complaints about things, mostly with respect to communication.  I've been playing phone tag with a nurse from the hospital for the past few days -- hopefully I will have a chance to voice some of my concerns.  And while my oncologist finds it somewhat amusing how many people I managed to piss off in a short amount of time, the more I think about it, the more that troubles me a bit.  I realize that I am probably a more demanding and vocal patient than average.  Nevertheless, I realize the real world constraints of providing care in a hospital, and that the nurses and other staff are often overworked, understaffed, underappreciated, and underpaid.  I went out of my way to be constructive in any criticism that I offered, and to be as polite as possible, and not just a complaining whiner.

I think the one episode that annoyed me the most at the time that it happened had to do with the scheduling and implications of the chemo.  As I mentioned before, I've got this port installed in me (it still kind of freaks me out that there's this thing in me) where they give me the chemo drugs.  So the chemo couldn't start until that got done.  And that's a minor surgical procedure, which meant I couldn't eat or drink anything until that got done.  And that was originally scheduled I think around noon on my first full day there, but it kept slipping, and they didn't really give me that much feedback about timing as it was slipping.  So once it was finally done, I was really kind of desparate to eat, but wanted to take it easy, esp. given the issues that I've been having with respect to eating (especially in situations in which I had gone too long without eating).  So once I was done eating, I wanted a little time for my body to recover and digest.  Not to mention that I had no idea what might happen with appetite and nausea, so I felt it was extra important to get some serious nutrition into me while it still had some reasonable guarantee of being possible.

But then on the flip side was the question of sleep.  I had been having increasing trouble getting sleep at night, and that was another worry of mine.  So I was hoping to do my best to get some decent sleep before whatever side effects of chemo might kick in, and to have this all scheduled in some reasonably sane way.  But even once I had eaten and digested some, there were other various medication prereqs that had to happen before the chemo could start.  So it's starting to approach midnight (I believe this is late on the first), and I'm having a discussion with my nurse trying to time the best time to take a sleeping pill relative to all of the other stuff that's going to happen to me, although my specific concern at this moment is the fact that they're going to want to weigh me and draw blood sometime around 5 or 6 am.  Another nurse (I think perhaps the head nurse for the floor) happens to be in the room at the time, listening to this conversation, and she turns to me like I'm crazy.  Finally she makes it pretty clear, "You're not really going to get any sleep tonite", and proceeds to explain to me what's really going to happen, and how intrusive it is, and how there's this strict protocol, and things happened at a measured pace, and they're constantly checking my vitals, and gradually upping the pace (and the intervals of checking), but if something goes wrong that that can be rolled back, etc.  While I was very thankful with her for her honesty and forthrightness, I was kind of stunned that none of this was explained to me earlier.  So I turn to the woman who is my nurse and is standing right there, and say somewhat incredulously to her, "Why didn't you tell me any of this?"  To which her response was, "I did."  Which is total and utter bullshit.  The closest I can come to unraveling this miscommunication is that when she had previously said "You can sleep", she meant that if somehow I manage to doze off briefly between periods of being poked and prodded, that nobody is going to forcably awaken me.  But that's pretty damn different from the impression that she had given me that periodically people would be coming in quietly to change IV lines and keep an eye on me, but that I'd be able to a first order to get something somewhat at least resembling a night's sleep.

So it ended up being a long night.  A very long night, because things didn't go 100% as had been hoped for.  They start the first chemo drug at a pretty slow rate, I think 50 ml/hr.  They start out checking your vital signs every 15 minutes, and gradually ease up on that as they gradually increase the dosage to I think a target of 400 ml/hr.  But I never made it that far.  Sometime I think around 200 or 250, I started to develop a rash.  So they put the chemo on hold and get a doctor.  They gave me some cortizone, which thankfully had a very rapid and complete effect on the rash -- the next time I checked, there was literally no trace of it.  But the downside is that they dialed me back to 50 ml/hr, and kept it at that rate for the duration.  So at this point it's the early hours of the morning, I still have something like 7 or 8 or 9 (I forget how many now) hours to go on this drug, and this is just the first drug.

Anyway, enough complaining about that.  I got through it fine, and in retrospect my body's reactions to all of this has been as positive as I could possibly expect, that it's not as big of a deal anymore.  (Although I was pretty pissed off at the time.)

While I'm on the topic of chemo, here's a copy the glossy brochure I mentioned before for the Power Port (tm).  So what is the probability that the woman on the front actually has this device implanted within her?  Am I the only one that is somewhat disgusted by the notion of booth babes for medical devices?

I'm VERY glad that I brought my laptop to the hospital, and that I was able to overcome the wifi annoyances and communicate with the outside world.  I also really appreciated having the laptop for music.  What got me through the late night hours of chemo, when I couldn't manage to get any actual sleep, was Dr. Toast.  I tried listening to some other stuff, but I eventually found myself just coming back to this.  It was just so perfect.  Thank you to whomever turned me on to this -- was that Brendan?  And if anyone has any suggestions for any other music that I might similarly like, please do share.  (I probably should pose this question to a larger audience.)  I suppose in general what I'm looking for is something somewhat mellow but with somewhat of an interesting beat.  Electronic or -ish without being a bunch of crappy repetitive techno.  If any of my readers remember bianca's from Burning Man in the late 90's or early 00's, I guess anything kind of "shackgroove" may be what I have in mind.  But back to Dr. Toast -- want to know what he sounds like?  Go download it yourself and try it out.  It's freely available online with a "name your own price" policy.  I wish more musicians would do this.  Also, while I'm on the topic of music, perhaps my all time favorite ambient CD is "Archive Volume Two - Ambient 1994" from Dubtribe Sound System.  It's a 2 CD set, but sadly I lost disc 2 years ago.  If anyone out there has this, I would love to get a copy.  (FLAC preferred, but I'd settle for a high quality AAC or MP3 encoding.)

I was very glad to have a private room at the hospital.  Not just for what it meant to me, but I would have felt pretty bad for someone else having to share a room with me.  The main reason I chose this hospital vs. the other Alta Bates campus (in Berkeley) was because all of the rooms were private ones.

And in retrospect I'm really glad that I went somewhere close by.  Having Lorien be able to regularly visit, and bring me food, meant so much.  I would have felt a lot more lonely had I been over in the city.

And one last little story about a comfort from home that meant a lot to me.  Dylan has a security blanket -- literally.  It's a light blue fleece blanket, with blue, white, and brown colored dots, and a brown satiny border.  He calls it Bop.  Thankfully we've managed to set some boundaries with Bop (no Bop at the dining table, no Bop in the bathroom, Bop doesn't leave the house), and it's not always with him in the house all of the time, but he definitely derives a substantial amount of comfort from Bop, and he always sleeps with Bop.  And I can sympathize with him, and here's why.

When I was very young (I believe this was a gift from birth), I had a stuffed Snoopy.  I called it Teddy.  I was very attached to it.  Besides last week, I've only been hospitalized one other time.  I was born with crossed eyes, and at 18 months old (close to Dylan's age now), I was hospitalized for surgery to correct my eyes.  Apparently when I came out of surgery, I kept calling out for Teddy.  The nurses misunderstood me and thought it was so sweet how devoted I was to my Daddy.  (Sorry, Dad.)  Apparently over the years I eventually chewed off all of the fur on Snoopy, and he became kind of a nasty, dirty mess, and my parents were concerned that I was a bit too attached to it.  So somehow they managed to convince me to part with Snoopy, and they threw him out.  Despite having no memory of any of this, I never really forgave them, and it's something that I kept coming back to time and time over the years, how could you possibly have thrown away my Snoopy?  In retrospect maybe I was overreacting a bit (I suppose they could have just never told me about any of this), but it did kind of upset me somewhat.

Many years later -- I believe it may have been as a 30th birthday present -- my parents got me a new Snoopy.  It was a very touching present that made me very happy.

Obviously, upon my return to the hospital, it was essential that Snoopy accompany me.  A mild panic set in (which delayed our departure to the hospital somewhat) when Snoopy couldn't be located, but he was eventually found (I suspect Dylan may have relocated him), and he came with me.

I had been hoping for a cute picture of me snuggling up with Snoopy in the hospital bed.  Trust me, it did happen a lot (he absolutely slept with me and was a comfort to me during the chemo), but it just didn't work out to ever get a picture of it.  Nevertheless, I present to you the best that I can do, me and various Snoopy's over the ages.  (I was a bit chunkier in the middle pic.)  I'm especially thankful for the first picture, as it is one of the few childhood pictures I do have.  And no, Mom and Dad, I'm not saying that to try to make you feel bad -- I realize that it's a lot easier to take pictures now than it was a generation ago, and I also realize the reality of trying raise 3 kids.  I'm not at all bitter about the lack of photographs.  I genuinely am expressing appreciation for what I do have.