[FROM SUSAN]
This is our fourth trek to Duke for what we have come
to refer to as "chemo days." Duke has proven to be surprisingly easy to navigate on some levels, but we
still get the floors confused because each one pretty much mirrors the
other.
Our "territory" ranges from the second floor treatment rooms to the sub-basement (white zone) where he gets radiation. On "just radiation" days there is a small parking lot just outside the radiation clinic door. On chemo days we can’t park there, and so I drop Peter off to save time in the early mornings.
Our "territory" ranges from the second floor treatment rooms to the sub-basement (white zone) where he gets radiation. On "just radiation" days there is a small parking lot just outside the radiation clinic door. On chemo days we can’t park there, and so I drop Peter off to save time in the early mornings.
Routines develop.
Of all the trips we’ve made here, only two appointments have been in the
"new" hospital—Duke North. But
each week Peter points to the entrance of North when we pass it and says,
"That’s where we're supposed to
go." And I ask him if his appointment is the same place as last
time, and he says, "Yes." So
I make a left turn towards Duke South, and he stays worried until we get to
Trent Drive. At that point he sighs and says, "oh, yeah."
Duke South has a drop-off circle with two entrances. Just inside the Morris entrance is a painting of one of the benefactors to the hospital who was a friend of our friends, the Lachman family. His nickname was "Hi." Every week Peter sees the painting through the glass as we pull into the circle and says "Hi Hi." Then I let Peter off and head to the parking deck.
Duke South has a drop-off circle with two entrances. Just inside the Morris entrance is a painting of one of the benefactors to the hospital who was a friend of our friends, the Lachman family. His nickname was "Hi." Every week Peter sees the painting through the glass as we pull into the circle and says "Hi Hi." Then I let Peter off and head to the parking deck.
I smiled to myself as I pulled into the deck today, realizing that I was now an "old timer" here, knowing to pass all the open spots on row 1-C to circle up to 2B, which is closer to the door that leads to the walkway to the clinic.
There was a bit of a wait in the clinic this morning due to a glitch in the scheduling. But the doctors never seem rushed, and even today, having had to work us in, they were downright chatty. Dr. Uronis says she's coming to hear Peter's band play on the 28th (details below).
A couple of
things about Duke are curious, though. One
is that despite a high-tech online registration and reporting system, we filled
out an awful lot of repetitive paper work over and over in our early days here,
and most days Peter has to fill out the same sheet in both clinics.
The other
curiosity is that despite the Hippa law, and Duke’s attempts to comply (with signs
and restaurant type buzzers), they still walk out and holler your full name
across the crowded waiting room. Peter
has asked that they not do this…but the practice continues.
Peter seems
to start feeling better on chemo day, and both his appetite and his energy stay
up for about three days after. Then there is a so-so day (we should
expect that on Sunday if the pattern holds) and then two to three bad days,
which entail some GI distress, low energy, weakness, and absolutely no
appetite. Peter finds any mention of food to be
repulsive. He keeps losing weight, which
is concerning.
The oncologists explained that the radiation will start to take an additional toll on his energy and his appetite. Dr.Willett and Nurse Celia are really getting after him about eating and drinking, especially the latter. Dr. Willett said that patients sometime have to be hospitalized due to weight loss and dehydration. And, in fact, one of our friends who has been through a similar ordeal was admitted twice.
The oncologists explained that the radiation will start to take an additional toll on his energy and his appetite. Dr.Willett and Nurse Celia are really getting after him about eating and drinking, especially the latter. Dr. Willett said that patients sometime have to be hospitalized due to weight loss and dehydration. And, in fact, one of our friends who has been through a similar ordeal was admitted twice.
Getting
enough calories into Peter is challenging even when he has an appetite, and is just
impossible when he doesn’t. Those days
are real frustrating for both of us.
Next
Thursday is the last chemo, and a couple of weeks after it Peter
should start feeling better...maybe even in time for his gig. After the last chemo and radiation he'll have
a break for at least a month before surgery, which will be a time to try to pack the
pounds on. Then start the diagnostics
that lead to surgery. That feels like a great
unknown to us right now.
[FROM PETER]
Readers of this blog are encouraged to come out and see Red's Rhythm at The Depot (www.hillsboroughdepot.com)
on Saturday night, Jan. 28 at 8:15 PM. Good time rock n' roll and things
to eat and drink. Also, on Sat. night, January 21 at 8 PM, there's a
party/music jam at the farm organized by my good buddy Geoff Hathaway.
This session has no other agendas besides good fun and music. There's a
core band of players (R&B/soul/blues/funk), but if you're a musician
and you want to play, please get in touch with me at 452-8873.- Peter
Peter... Hope you are feeling ok today and if not, resting comfortably. Sending you and Susan love from NYC, see you soon :)
ReplyDeletePeter,
ReplyDeleteKeep up the hard work of eating what you can, & especially drinking. I know very much how hard it is, but keep trying different stuff until you find something that doesn't repel you. In my case, I became very attached to orange gatorade, of all things, in the fluids department. Keep working at it, we'll keep playing a tune for ya.