Tuesday, February 28, 2012
REMINDER!
Prayers, wishes, good vibes, healing energy...whatever you have to send, please send buckets-full for Thursday, the day of the follow-up PET/CT scan. Aim it all towards the Duke Clinics. Thursday morning. We'll feel it swirling around us.
Monday, February 27, 2012
VACATION
[FROM SUSAN]
Someone posted a note on Facebook about how to delete your
browsing history before Google changes their policy and makes our history their
property. I giggled a little when, while
browsing sites for knitting yarn and patterns, Google sent me ads for where to
buy a skid steer…otherwise known as a Bobcat.
Yes, I’d been browsing those last week, but hadn’t planned to knit while
driving one.
Peter and I are in Black Mountain, NC. Before he retired he used to say from time to
time that he wanted to go to the mountains.
So last summer I bought this Living Social deal, and then got busy, and
then he got sick, and so it took a while to get here. We’re in a big old creaky house that used to
be a stage coach inn. The room is a bit
too small, but there are a few sitting areas, and trains go by several times a
day. There are even ponies in the back
yard.
We started the day with a massage for me and a Reiki session
for Peter. I’ve never been much of a
massage fan, but this one was nice and I think my body is happy for it. Peter has been doing Reiki with Toni Stevens
and appreciates the relaxation it brings him.
I’ve always wanted to spend more time in Black Mountain, and
so was happy to wander all over today.
We had time for Asheville too.
Peter bought two large metal decorative items for outbuildings (we have
plans for a garden), and I bought some knitting yarn and patterns and a new
outfit. It was good to get away.
We’ll get home later on Tuesday, work on Wednesday (me) and
then be back at Duke Clinics early Thursday for the follow-up diagnostics…a
PET/CT scan that will take a look inside Peter’s esophagus and tell us the
status of “the little bastard.” We both
get nervous when we think about that day.
I remember how it felt to sit in that little room and wait for someone
to come tell us about the first PET/CT scan.
That news was good (no metastases).
We’re hoping for the same this time.
From there we should know about plans for surgery. Peter is still feeling pretty good, though
his appetite isn’t what it used to be.
He’s gained a few pounds and hopes to pack on some more before surgery.
Next week Tricia Lindley arrives to take my place at the
Johnson Intern Program for a few months. It will be odd
to step away after seven years, but I am so grateful for the opportunity to give my full attention
to Peter and our family at this time. I
add my workplace and Tricia to the long list of things for which Peter and I are immensely grateful.
Monday, February 20, 2012
GETTING BETTER
[BY PETER]
A day or two after Susan wrote her last entry, I started to feel much better. Although doctors had said I could expect to improve 1-2 weeks after the last of 30 radiation and 5 chemo sessions (1/31/12), it had been discouraging to Susan and me that the uncomfortable side effects continued as strongly as Susan described them.
A day or two after Susan wrote her last entry, I started to feel much better. Although doctors had said I could expect to improve 1-2 weeks after the last of 30 radiation and 5 chemo sessions (1/31/12), it had been discouraging to Susan and me that the uncomfortable side effects continued as strongly as Susan described them.
But the last week has
been terrific- normal appetite, no weakness or vomiting, regular daily
exercise. I weigh 185, about 60 lbs. lighter than a year ago. But a lot
of that weight was excessive and needed to be lost. Although I look
really thin, my BMI (body mass index) number is 23 or within the
"normal" range for my height of 6'3''. A wieght of 200 lbs. is
considered to be "overweight." Still, doctors would like me to gain some
if surgery is to follow.
A PET scan is scheduled for March 1st to see if the initial treatments have shrunk or contained the tumor. If so, surgery will likely follow early in April. If not, on to Plan B (?).
Susan's and my wish for our dear friends and family- please take good care of yourselves! Be healthy and well for yourselves and loved ones.- PK
A PET scan is scheduled for March 1st to see if the initial treatments have shrunk or contained the tumor. If so, surgery will likely follow early in April. If not, on to Plan B (?).
Susan's and my wish for our dear friends and family- please take good care of yourselves! Be healthy and well for yourselves and loved ones.- PK
Tuesday, February 14, 2012
The Waiting Game
[BY SUSAN]
I don’t know what to
compare this to. Certainly not something
exciting like a birthday or Christmas.
Not anything ominous, like a hurricane, though one seems to be brewing
on the other side of this ocean of expectancy.
What we’re waiting for is
Peter to feel better. We’re waiting for
energy and appetite to return. Since his
diagnosis in November, this life of illness and treatment has become the “new
normal,” and we want the old normal back.
All through the
chemotherapy there were some really good days here and there (plus a couple of
neutral ones and a couple that were pretty bad each week). With chemo ending on January 19th ,
I think we expected an upward trajectory. Maybe we weren’t listening the day when they told
us that “radiation effects are cumulative.”
Peter’s last really good days were January 28th
and 29th, when his band, Red’s Rhythm, played at the Depot in
Hillsborough (see previous blog). He
hadn’t felt well prior to the 28th, but the high energy of that
night continued right through Sunday for Peter, such that he even went out and
split some wood.
Then things declined. The last day of radiation was
Tuesday, the 31st, and Peter was too sick for either of us to feel
like celebrating. Today marks the two-week
post-treatment date, and every day had been pretty much like another, with no
appetite, little energy, weight loss, and a few meals each week that refuse to
stay where they belong. Peter had a cold
at the end of January and the cough and runny nose are hanging on. Still, the doctors tell us this is all “as
expected.”
I think it is more like
the diagnosis our dog, Buddy, got at the vet’s.
I saw “ADR” written on his chart and asked what that meant. “Ain’t Doing Right,” was Dr. Bianco’s
reply. These days Peter is ADR.
Still, Peter’s mood has
been mostly positive. He’s had a lot of
visitors, and really enjoys those. He
continues to orchestrate music events, and looks forward to those coming to
fruition (Green River Band reunion gig here at the house March 10th). Our friend Joe Coates has been a constant support,
and he and Peter urge each other to exercise when neither really feels like it. Joe came over and cut a tree for Peter this
week.
On the occasional day when
Peter feels a little better we assume that THIS is the beginning of the
improvement, and we latch onto that hope.
In this period between treatment and surgery he is supposed to return to
some robustness, gain weight, and be in the best possible shape he can be in
for surgery. Two weeks have gone by and
we haven’t set foot on that path yet.
But yesterday held a spark
of hope. Peter went swimming at the
Sportsplex, had a band practice, ate three meals, took a long walk in the woods
with his dogs, split a few logs (!) and it is nearing 9 p.m. and he’s still up
and moving and downright perky. We will
see what tomorrow will bring.
People ask me how I am
doing and I never know quite what to say.
I say fine and most days I am fine, just putting one foot in front of
the other to get things done so I can take off of work for the surgery. Most days I plod along and this new normal is
simply what is. I am eating really well
and riding my horse, doing some yoga, and most nights I sleep pretty well.
But Friday things caught
up with me for some reason. Trying to help
Peter to eat (and drink and take his meds) gets really frustrating for both of
us. Nothing was particularly worse on
Friday, but I woke up teary and stayed that way all day. One of the priests at work (Tammy) asked me
how I was and saw my tears well up, which I’ve always found embarrassing for
some reason. I seem to remember some early
60’s song that declared, “Big girls, they don’t cry-y-y,” that my family sang,
so maybe I took it to heart. (Peter just informed me that this is one of the
first records he ever bought…and corrected the decade I’d put it in).
So it seems that some days
the immensity of Peter’s illness breaks through and catches me off guard. Most days I keep busy and some days are
really joyful, as when we were interviewing for new interns last week. But the looming surgery is such a big
unknown, and I haven’t tackled it the way I tackle most things…by finding out
everything I can about it. In this case,
knowing seems scarier than not-knowing.
I realize that this
disease is giving me some real opportunities to learn about myself, for Peter
and me to learn more about each other, and for us both to see immense the web of
support that we have.
Each one of you gives me
that support when you ask, “How ARE you.”
Some days I’ll give you my elevator-speech answer and that is the best I
can do at the time. Some days I’ll just
start talking, and what I say will help me figure out the answer to that
question, because I really don’t know.
Saturday, February 4, 2012
Delay to March 1st
[BY SUSAN]
Every other week I write a column for the Chapel Hill Herald, and this blog seems to have become my in-between week writing. Peter tends to write the blog on my column weeks, or so it has worked out well.
Peter wrote this week, and reported on the music that gives him so much joy and energy. If you saw the performance on Saturday night you would not have known Peter was sick. He'd worried about needing a stool to sit on at some point, but once the music got going, I don't think the thought crossed his mind. So many of our wonderful friends came (including a contingent from my work!) that we both felt incredibly blessed by all of you.
What he didn't say is that these past two weeks have been the worst in many ways, and it was pure miracle (and positive energy) that enabled him to sail through the gig on the 28th and carried him through an energetic Sunday, even splitting a few logs in the woods. Can you guess that Monday was a crash day?
It was also the next-to-last day of radiation, when all the cumulative effects of both treatments seemed to gather in force. They wreaked havoc on his stomach, and he didn't eat (or keep down) much of anything Monday or Tuesday, and the radiation staff threatened heavily (hospitalization and feeding tubes get mentioned) at that last visit.
I've been pushing the eating tactics I learned when pregnant. Eat lots of small meals (the docs have said this from the get-go), eat the BRAT diet (bananas, rice, applesauce, toast), and use saltines to settle the stomach before larger meals. But when Peter feels bad, and I am not around to push, he has such an aversion to food that it is hard for him to walk into the kitchen. Lately, even food odors (especially onions cooking) turn his stomach.
Wednesday was another little-intake day. That night I went to the store and bought lots of what I refer to as "junk food"---highly processed, packaged, and convenient. That last adjective made it worthy for the cause.
I also discovered (at my sister's suggestion) that Peter had not been taking his anti-nausea, pro-appetite meds (she suspected this because he's a guy).
I came home with the stash of food, and distributed it all over the house, in the places where Peter sits during the day, and splayed out across the main kitchen counter.
On Thursday morning, before work, I engaged the second strategy, which was to create a Google doc with time slots every 2 or so hours, and send it out to family members and a few close friends (some medical professionals thrown in the mix), asking them to choose a time in which to call Peter to encourage him to eat and ask him if he'd taken his meds. I send a list of the food that is easily available to him.
At some point on Thursday Peter called me and asked, "Are you siccing people on me?" I fessed up. Later he heard me refer to the email I'd sent. "There's an email?" he asked. That night he took note when I referred to the schedule. "A schedule too?"
Yes! And it is working. He nibbled all day on Thursday and felt better. He followed suit on Friday and was even able to go swim some laps. In another week or so the effects of all this assault on his system should start to recede, and he should start to feel like himself more and more. In the meantime, the calls and prods are working.
Because of his nausea and weight loss the docs moved the date of the follow-up diagnostics to March 1st. I am grateful for this. His body will have more time to heal, and the inflammation from the radiation will have had time to go down, so they will be able to see things more clearly on the scan. This delay won't necessarily push back the date of the surgery, which will probably still be mid-to-late March.
On another note, the Johnson Intern Program, where I work, is supporting me whole-heartedly by bringing in alumna Tricia Lindley to serve as interim director during the time of the surgery. I will be able to be completely un-plugged from work during this time, which is a real gift. Peter and I continue to marvel at our good fortune for having good medical care so close-by, having our daughters right here in town, Peter's recent retirement and my having a supportive workplace, and of course all of our wonderful friends. If you're reading this, you're in that contingent, and we appreciate you more than you can know.
Oh, and if you want to give Peter a call, be my guest!
--Susan
Every other week I write a column for the Chapel Hill Herald, and this blog seems to have become my in-between week writing. Peter tends to write the blog on my column weeks, or so it has worked out well.
Peter wrote this week, and reported on the music that gives him so much joy and energy. If you saw the performance on Saturday night you would not have known Peter was sick. He'd worried about needing a stool to sit on at some point, but once the music got going, I don't think the thought crossed his mind. So many of our wonderful friends came (including a contingent from my work!) that we both felt incredibly blessed by all of you.
What he didn't say is that these past two weeks have been the worst in many ways, and it was pure miracle (and positive energy) that enabled him to sail through the gig on the 28th and carried him through an energetic Sunday, even splitting a few logs in the woods. Can you guess that Monday was a crash day?
It was also the next-to-last day of radiation, when all the cumulative effects of both treatments seemed to gather in force. They wreaked havoc on his stomach, and he didn't eat (or keep down) much of anything Monday or Tuesday, and the radiation staff threatened heavily (hospitalization and feeding tubes get mentioned) at that last visit.
I've been pushing the eating tactics I learned when pregnant. Eat lots of small meals (the docs have said this from the get-go), eat the BRAT diet (bananas, rice, applesauce, toast), and use saltines to settle the stomach before larger meals. But when Peter feels bad, and I am not around to push, he has such an aversion to food that it is hard for him to walk into the kitchen. Lately, even food odors (especially onions cooking) turn his stomach.
Wednesday was another little-intake day. That night I went to the store and bought lots of what I refer to as "junk food"---highly processed, packaged, and convenient. That last adjective made it worthy for the cause.
I also discovered (at my sister's suggestion) that Peter had not been taking his anti-nausea, pro-appetite meds (she suspected this because he's a guy).
On Thursday morning, before work, I engaged the second strategy, which was to create a Google doc with time slots every 2 or so hours, and send it out to family members and a few close friends (some medical professionals thrown in the mix), asking them to choose a time in which to call Peter to encourage him to eat and ask him if he'd taken his meds. I send a list of the food that is easily available to him.
At some point on Thursday Peter called me and asked, "Are you siccing people on me?" I fessed up. Later he heard me refer to the email I'd sent. "There's an email?" he asked. That night he took note when I referred to the schedule. "A schedule too?"
Yes! And it is working. He nibbled all day on Thursday and felt better. He followed suit on Friday and was even able to go swim some laps. In another week or so the effects of all this assault on his system should start to recede, and he should start to feel like himself more and more. In the meantime, the calls and prods are working.
Because of his nausea and weight loss the docs moved the date of the follow-up diagnostics to March 1st. I am grateful for this. His body will have more time to heal, and the inflammation from the radiation will have had time to go down, so they will be able to see things more clearly on the scan. This delay won't necessarily push back the date of the surgery, which will probably still be mid-to-late March.
On another note, the Johnson Intern Program, where I work, is supporting me whole-heartedly by bringing in alumna Tricia Lindley to serve as interim director during the time of the surgery. I will be able to be completely un-plugged from work during this time, which is a real gift. Peter and I continue to marvel at our good fortune for having good medical care so close-by, having our daughters right here in town, Peter's recent retirement and my having a supportive workplace, and of course all of our wonderful friends. If you're reading this, you're in that contingent, and we appreciate you more than you can know.
Oh, and if you want to give Peter a call, be my guest!
--Susan
Thursday, February 2, 2012
"Take Me Home...."
[BY PETER]
The last few weeks have been especially terrific for music. On January 20, I went with my old college friend Marty, up from Atlanta for the weekend, to see the Harvey Dalton Arnold Blues Band (HDABB) at The Depot. Harvey gives every performance 150% effort, and with Kim Shomaker, Darrell Young, and Tim Carrey, he has found three musicians to not only keep up with him but push him to new heights in playing and singing. In less than 2 years, they're revived old blues material in fresh ways and written new songs that already sound like classics. The Depot crowd loved their last song, "There Goes Another Love Song", made famous by The Outlaws when Harvey was a member ('76 - '80). Check out HDABB at Durham's Casbah Club on Friday night, Feb. 10. You may want to check out an article I wrote about the band for the Burlington, N.C., newspaper:
http://www.thetimesnews.com/
The next night was a blues/funk/rock/jazz jam at the farm. Organized by the always enthusiastic bassist Geoff Hathaway, participants included vocalists Sallie Deaton, Jennifer Evans, Lopaz Evans, Lynne McGhee, and Page Hathaway; guitarists Jay Cunningham and Charlie Ebel; drummers James Norwood and Rodger Tygard; The Mudbone Blues Revue (Sallie's band); saxophonists Rev Ransom and Jay Miller; keyboardist Zina Smith; and flautists Bev Scarlett and Holli Crawford. New to the building was Mike Spivey on trumpet/sax/ trombone. It was the first appearance by a trombone in the building, and Mike's pairings with Rev were really special.
On Saturday, Jan. 28, Red's Rhythm played to an overflow crowd at The Depot, by far our most successful of 7 appearances there. Owner Meleah Gabheart has created a comfortable, attractive venue for folks. A personal goal was for me to get through all 3 sets without having to sit down or leave the stage with some kind of discomfort, which, with the presence of the generous crowd, including many readers of this blog (thank you), worked out OK. Guest musicians included Brett Englund on guitar and Mike Bisdee (guitar), Cliff Cox (drums), and Steve Smith (keys), all former bandmates of mine. Stacey was at her usual high level of fronting the band, especially on Joan Jett's 80's anthem "I Love Rock and Roll," which I've resisted doing. I'm pleased to be proven wrong.
A few weeks ago at the hospital while waiting in the lobby for exams and my last chemo appointmet, a hospital volunteer asked small groups of those waiting if they'd like to hear her play and sing something. She broke into "Take Me Home, Country Roads" by John Denver. I sang along a soft harmony on the chorus. She looked my way and nodded, which meant either "oh, cool, someone is singing along" or "be quiet, this is my gig." Along with friends Harvey, Janet Stolp, Stacey, and Callie Warner, I've been a similar volunteer at UNC-Hospital with its Door To Door program.
The last few weeks have been especially terrific for music. On January 20, I went with my old college friend Marty, up from Atlanta for the weekend, to see the Harvey Dalton Arnold Blues Band (HDABB) at The Depot. Harvey gives every performance 150% effort, and with Kim Shomaker, Darrell Young, and Tim Carrey, he has found three musicians to not only keep up with him but push him to new heights in playing and singing. In less than 2 years, they're revived old blues material in fresh ways and written new songs that already sound like classics. The Depot crowd loved their last song, "There Goes Another Love Song", made famous by The Outlaws when Harvey was a member ('76 - '80). Check out HDABB at Durham's Casbah Club on Friday night, Feb. 10. You may want to check out an article I wrote about the band for the Burlington, N.C., newspaper:
http://www.thetimesnews.com/
The next night was a blues/funk/rock/jazz jam at the farm. Organized by the always enthusiastic bassist Geoff Hathaway, participants included vocalists Sallie Deaton, Jennifer Evans, Lopaz Evans, Lynne McGhee, and Page Hathaway; guitarists Jay Cunningham and Charlie Ebel; drummers James Norwood and Rodger Tygard; The Mudbone Blues Revue (Sallie's band); saxophonists Rev Ransom and Jay Miller; keyboardist Zina Smith; and flautists Bev Scarlett and Holli Crawford. New to the building was Mike Spivey on trumpet/sax/ trombone. It was the first appearance by a trombone in the building, and Mike's pairings with Rev were really special.
On Saturday, Jan. 28, Red's Rhythm played to an overflow crowd at The Depot, by far our most successful of 7 appearances there. Owner Meleah Gabheart has created a comfortable, attractive venue for folks. A personal goal was for me to get through all 3 sets without having to sit down or leave the stage with some kind of discomfort, which, with the presence of the generous crowd, including many readers of this blog (thank you), worked out OK. Guest musicians included Brett Englund on guitar and Mike Bisdee (guitar), Cliff Cox (drums), and Steve Smith (keys), all former bandmates of mine. Stacey was at her usual high level of fronting the band, especially on Joan Jett's 80's anthem "I Love Rock and Roll," which I've resisted doing. I'm pleased to be proven wrong.
A few weeks ago at the hospital while waiting in the lobby for exams and my last chemo appointmet, a hospital volunteer asked small groups of those waiting if they'd like to hear her play and sing something. She broke into "Take Me Home, Country Roads" by John Denver. I sang along a soft harmony on the chorus. She looked my way and nodded, which meant either "oh, cool, someone is singing along" or "be quiet, this is my gig." Along with friends Harvey, Janet Stolp, Stacey, and Callie Warner, I've been a similar volunteer at UNC-Hospital with its Door To Door program.
Finally, I received three CD's today from Al Dawson, whose present band is the Billitones
(with Lew Wardell, Toni Stevens, Bill Stevens, and Tim Madigan). I've
listened to Al, a great singer/guitarist, since 1974 in many
configurations, e.g., Weeds and The Claptones. Two Cd's were recent ones
of the Billitones and the third, which I haven't listened to yet, is of
classical guitar by Al. He wrote in a note of his project, Solo Deo Gloria,
"I realize you are going through some tough times right now, and as I
say in the liner notes, maybe you can listen to this music and get some
peaceful or soothing moments from it. For me, it is the work of a
lifetime, and the pieces I chose are really great compostitions in their
own right no matter who plays them." Whether Al is playing the Allman
Brothers "Blue Skies" or anything else, I will be moved by it.
The next music event I'm looking forward to is a jam at the farm organized by Mike Bisdee and other members of Green River, my old band from '98 - '02. The date hasn't been nailed down yet, but you all are invited.
"Let the music keep our spirits high"- an old Jackson Browne line. It's done wonders for mine.- Peter K
The next music event I'm looking forward to is a jam at the farm organized by Mike Bisdee and other members of Green River, my old band from '98 - '02. The date hasn't been nailed down yet, but you all are invited.
"Let the music keep our spirits high"- an old Jackson Browne line. It's done wonders for mine.- Peter K
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