Getting started

Checked into the Beth Israel Medical Center Monday morning.  At least on the head/neck oncology floor, one ends up talking with/being guided by various people.  There is the attending physician, resident PA, Nurse Manager, regular nurse, PCA (s), and housekeeper — this is only to get started.  I should have had the first radiation treatment already this morning, but the “machine” (as they call it) is still not operable from the weekend.  So best use of time is starting the PEG tube process.

I’m given a private room which is nice. The housekeeper comes in and inventories all my belongings–my shirt, jacket, pants, shoes, counts my money, credit cards, contents of my little overnight bag.  One of the first guys who comes to see me is the assistant to the doctor who will be overseeing the endoscope/feeding tube operation.  After he asks me what questions I may have he says bluntly, “I’m going to tell it to you straight, chemo and radiation treatment sucks, but this feeding tube will make life slightly more pleasant.”  (as if in case I’m having second thoughts as some do).  I tell him “look, Mr. PEG tube installer, I’m sold on the tube already, just want to know how this may inhibit daily life.” It won’t, he tells me, as long as you don’t lift anything heavier than a coffee cup.  I ask him how many of these operations he’s done, he tells me well over 2,000.  He’s a dry, direct, no smile kind of guy.  I should be assured.

So I change into my issued pants and gown, got fitted with an IV, hopped on a gurney for a ride to, as the attending doctor in the endoscope lab called it “PEG’s R Us.”  The doctor does the work from the mouth side, his asst, Mr. dry guy, makes the hole and does wiring from the stomach side.  The anesthesiologist guy just makes sure I’m not paying attention.

Waking up from the operation, it definitely feels like I got punched in the stomach, hard. And the pain hangs around like a new best friend.  They give me some demerol, but it has zero effect.  I’ve seen a video of someone who received a PEG tube as an outpatient (YouTube) and he seemed quite chipper.  It was the same day he had the operation.  I was in more pain than that fellow appeared.  Apparently I’m higher up on the sissy bar than I had hoped.

Before returning to my room for the stay, it’s a trip back down to radiology for rad treatment.  First zap.  Because there is only one machine, and it got started late, I’m cued in a two hour plus wait on my traveling bed with a new feeding tube that’s telling me it wants to know me better.

Radiation seems harmless. But as in many things in life, it’s the accumulation of what you don’t see that makes the difference.  When I do get the rad treatment it’s almost 6pm.  So I get transported back to my room and the nurses wonder where I’ve been all day.  ‘Waiting,’ I say.

But the nurses are nice.  In large organizations it’s always the individuals who make the difference.  For jumbo institutions, it’s not easy to create a warm, customer-oriented culture.  So when you run into those who really care and are extra kind, the above-and-beyond care and kind, it’s a humbling reminder of how I should emulate those qualities a bit more often.

Because I needed several hours of hydration through IV prior to chemo, I didn’t receive the chemo until after 10 pm.  Chemo lasts three hours, then four hours of a hormone flushing agent, the process made for a semi-active night.

GV was extremely supportive and helpful. She patiently waited in various waiting rooms where she could.  During the evening, we were able to watch a movie on my laptop (with lots of pauses).  They wheeled in a small gurney for her to sleep on.  Nice perk.

This morning I was wheeled down to the rad department again (not allowed to walk) and got today’s treatment out of the way.   Because of the early hour, the wait was significantly less.  Then it’s back to the room for a little exercise (walking around), additional IV medication, and instructions for using and maintaining the PEG.  Next step–discharge, but not without homework and other items to add to the to-do list.  Now it’s back to work, kind of, because it’s slow walking until my PEG and I are better acquainted.

4 thoughts on “Getting started

  1. martha c. wood

    These necessary procedures are the ultimate challenge. GV’s being with you is of immeasurable comfort to those of us who cannot be with you. Your keeping us informed, not-with-standing the discomfort you experience, is priceless.
    Quintilian: Good rhetoric is a good man speaking well. You are that good man. I am proud of you.
    Love,
    Mother

    Reply
  2. Mary

    Thank you for the updates. First thing I do when home from work is check your blog. I appreciate the opportunity to follow you through this journey.

    All my love big brother,
    Sis

    Reply

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