Getting Back On The Bike
Yesterday Susan and I took a ten mile bike ride on the flat,
mostly-paved American Tobacco Trail in Chatham and Durham Counties.
Informed about the route by daughter Amanda, who lives nearby in the
Southpointe area, it proved an excellent way of resuming a sport I'd
left behind in the difficult days of chem and radiation several months
before. For most even casual cyclists, a ten mile ride is like a walk to
the mailbox and back, but it felt like an honest workout to me, lending
visions of the more challenging Orange County hills in the future.
Having the ten-inch feeding tube taken out earlier in the week was a
relief and a gift. I was told that I can resume pool swimming in a week
and pond swimming two weeks after that. The concern for both is bacteria
and infection. Eating is challenging and problematic, as it stays down
only when I eat extremely slowly and in small portions. The stomach is
simply much smaller and functions not unlike it does for those people
who have had gastric bypass surgery.
Susan has written clearly of the dark, latter days in the hospital,
where I was beginning to worry about my mental status. The Duke nurses
could not have been more professional, attentive, and kind in their
work, but the hospital routine of little sleep, constant interruptions,
the placement and removal of catheters, tubes, and needles,
uncomfortable beds and general lethargy contribute mightily to the
obsession of returning home ASAP.
When I was at the hospital last week the Duke student newpaper had a
column by a 29 year old Duke grad named Gloria Borges, also a graduate
of Stanford Law School. With life looking good at age 28 (a promising
law career, a new marriage), she was hit with a diagnosis of Stage 4
colon cancer. In her on-line site
www.wunderglo.com,
Gloria details her furious fight against cancer, her three surgeries
and 20+ chemo sessions. She is tireless in her enthusiasm for the fight
and has even established a foundation to raise awareness and funds
around colon cancer. Her most recent event was a 3-on-3 basketball
tournament at Duke called "Go To Hell, Cancer!" Her positive energy and
outlook made me feel a little sheepish about my own occasional pessimism
and passivity and more resolved to emphasize the wonderful gifts I have
received from so many.
I encourage all readers to attend the amazing Murphey School Radio Show
on May 5 and 6. It will be the third production of the highly successful
and entertaining series. In the format of an old-time live radio show,
MSRS (
www.murpheyschoolradio.net) features comedy, music, and skits, plus it benefits the Coalition to Un-Chain Dogs and Eyes, Ears, Nose, and Paws of Carrboro.
On May 12, Red's Rhythm returns to The Depot in Hillsborough at 8 PM.
Our last show there on January 28 was incredibly fun and had crowds into
the street. We've got some nice new material- a Roy Orbison song by
Roger, a sweet old soul duet by our wonderful singers Stacey and Frank.
Friends and family continue to lift Susan and me with cards and emails,
food, favors, and words of hope, patience, and love. - PK
Sunday, April 22, 2012
Tuesday, April 17, 2012
RECOVERY WEEK 6 - TUBE COUNT DOWN!
Today the tube count went down to...ZERO!. Eating is still a challenge sometimes, but it all seemed within to realm of normal to the PAs we saw today. Peter was delighted that the new PA we met is a bass player. And, always good to see Scott Balderson, as we did today.
Peter still has to heal for a couple of weeks before swimming (and even then only in pools), but it feels great to him to be tubeless for the first time in 6 weeks. I think the psychological boost will be great. I got him to agree to take a bike ride with me on the Tobacco Trail this week.
And...no Duke appointments next week. I managed to get through it without throwing up today.
Peter still has to heal for a couple of weeks before swimming (and even then only in pools), but it feels great to him to be tubeless for the first time in 6 weeks. I think the psychological boost will be great. I got him to agree to take a bike ride with me on the Tobacco Trail this week.
And...no Duke appointments next week. I managed to get through it without throwing up today.
Sunday, April 15, 2012
RECOVERY - Week 5, Eating
Sorry for the long delay in the follow-up here. My own stomach distress was short-lived, so much so that I think it must have been something-I-ate rather than a bug.
Peter started eating on the 10th and his body is re-learning the process. His new esophagus (former stomach) has to learn the process of peristalsis, and Peter has to learn to gauge the quantity he can manage now. The old adage of "your eyes are bigger than your stomach" has never been more true. He is also learning that the process of digestion takes a lot of energy, and is tiring.
I got away a bit to the Co-Creation conference in Greensboro -
And, the new puppy is faring well. More later. Just wanted to get this down for now. Today's job is...taxes! Rather, it is to file our extension. I'd decided back in February not to tackle taxes in the midst of everything else. There's always July, right?
Peter started eating on the 10th and his body is re-learning the process. His new esophagus (former stomach) has to learn the process of peristalsis, and Peter has to learn to gauge the quantity he can manage now. The old adage of "your eyes are bigger than your stomach" has never been more true. He is also learning that the process of digestion takes a lot of energy, and is tiring.
I got away a bit to the Co-Creation conference in Greensboro -
(http://www.servleader.org/co_creation_conference)
where I re-connected with work a bit and got to spend time with a few of the current interns and bunch of alumni of the program I direct (www.johnsoninternship.org). That was renewing for me.Tuesday, April 10, 2012
CHECK UP: One up (Peter), one down (Susan)
In an ironic twist, the day the Peter gets to start eating turns out to be the day I stop--at least for a few hours.
Either I caught a bug that Amanda had, or my body disagreed with the poor food choices I had today at the hospital and mutinied. I spent more time in the bathroom than beside Peter, and only heard D'Amico say "no restrictions" on Peter's activities except for swimming (due to the remaining tube). He also offered the "cold turkey" option with the feeding tube, which Peter jumped at. We are to ignore the tube completely unless eating doesn't work well.
If all procedes according to plan, Peter sees Scott Balderson next week to take the tube out, then will see an ENT specialist about his wispy voice in two weeks, and has a routine follow-up with Dr. Uronis (medical oncologist) in three weeks.
I WAS present and listening for the swallow study early this morning. They had a tray of "real food" (their words) tinted a St. Patrick's Day green. She put a thin tube camera up Peter's nose and far enough down his throat to see his vocal cords. He was pretty uncomfortable. I had a blast watching the green goo go down on the monitor, and I sneaked in a picture before I was told not to. I'll post some pictures later, so check back here sometime tomorrow (will insert them in this post).
I clearly understand now why they waited so long for Peter to eat or drink. The vocal cords vibrate together for speech, but also come together to prevent substances from entering the trachea where they'd create havoc.
Peter's left chord isn't moving properly and so leaves a gap. She said some people come back in with the cords stuck wide open, and they are not allowed to eat or drink anything. Peter's body is managing the gap and not letting things go down the wrong pipe.
She also said that the act of eating and drinking rehydrate the chords and often that's all that is needed. She said that the tickle Peter often feels in his throat could be a good sign, as the nerve has both a mechanical and sensing function, and tickling could indicate that part of that function has returned.
When she heard that Peter was a singer, though, she emphatically recommended the follow up with the ENT. There are many options out there, and also the possibility he won't need to do anything but eat, drink, and wait.
Peter will have to give you the full D'Amico report that I missed. Basically everything looked very good. He came home energized, sent Jessie to the store for lots of food, ate too much too fast, and got a graphic lesson on what not to do.
Joe came out to cheer with us and help out with what I couldn't do. Jessie came prepared to stay and take care of both of us, but fortunately I am better (knock on wood) and without having to mess with the feeding tube tonight, the evening seems amazingly simple. We sent Jessie home as she has been traveling a lot and needs a night in her own house.
The news we haven't reported yet is that we got a new puppy on Easter. I'll give the full report on that tomorrow. I am pretty spent from being sick all afternoon. Thanks again to everyone for all the steady prayers, vibes, help, and good cheer.
SG
Either I caught a bug that Amanda had, or my body disagreed with the poor food choices I had today at the hospital and mutinied. I spent more time in the bathroom than beside Peter, and only heard D'Amico say "no restrictions" on Peter's activities except for swimming (due to the remaining tube). He also offered the "cold turkey" option with the feeding tube, which Peter jumped at. We are to ignore the tube completely unless eating doesn't work well.
If all procedes according to plan, Peter sees Scott Balderson next week to take the tube out, then will see an ENT specialist about his wispy voice in two weeks, and has a routine follow-up with Dr. Uronis (medical oncologist) in three weeks.
I WAS present and listening for the swallow study early this morning. They had a tray of "real food" (their words) tinted a St. Patrick's Day green. She put a thin tube camera up Peter's nose and far enough down his throat to see his vocal cords. He was pretty uncomfortable. I had a blast watching the green goo go down on the monitor, and I sneaked in a picture before I was told not to. I'll post some pictures later, so check back here sometime tomorrow (will insert them in this post).
I clearly understand now why they waited so long for Peter to eat or drink. The vocal cords vibrate together for speech, but also come together to prevent substances from entering the trachea where they'd create havoc.
Peter's left chord isn't moving properly and so leaves a gap. She said some people come back in with the cords stuck wide open, and they are not allowed to eat or drink anything. Peter's body is managing the gap and not letting things go down the wrong pipe.
She also said that the act of eating and drinking rehydrate the chords and often that's all that is needed. She said that the tickle Peter often feels in his throat could be a good sign, as the nerve has both a mechanical and sensing function, and tickling could indicate that part of that function has returned.
When she heard that Peter was a singer, though, she emphatically recommended the follow up with the ENT. There are many options out there, and also the possibility he won't need to do anything but eat, drink, and wait.
Peter will have to give you the full D'Amico report that I missed. Basically everything looked very good. He came home energized, sent Jessie to the store for lots of food, ate too much too fast, and got a graphic lesson on what not to do.
Joe came out to cheer with us and help out with what I couldn't do. Jessie came prepared to stay and take care of both of us, but fortunately I am better (knock on wood) and without having to mess with the feeding tube tonight, the evening seems amazingly simple. We sent Jessie home as she has been traveling a lot and needs a night in her own house.
The news we haven't reported yet is that we got a new puppy on Easter. I'll give the full report on that tomorrow. I am pretty spent from being sick all afternoon. Thanks again to everyone for all the steady prayers, vibes, help, and good cheer.
SG
Quick update
Hi everyone,
I don't have all the details, but Peter is just out from the doc and apparently able to eat soft foods and drink, and the feeding tube comes out in a week if he's eating well. Good news!
-Amanda
I don't have all the details, but Peter is just out from the doc and apparently able to eat soft foods and drink, and the feeding tube comes out in a week if he's eating well. Good news!
-Amanda
Wednesday, April 4, 2012
RECOVERY - Week 4, Wednesday 04/04
I apologize to the regular readers for skipping a few days. Peter thought he would write on Sunday, but didn't, and I kept thinking he would, so I didn't. Monday was a downer, and I didn't feel like reporting anything.
I have managed to keep writing my newspaper column through this...here is Sunday's: http://www.heraldsun.com/view/full_story/18059738/article-Learning-to-say--yes--to-help
The days are passing in the step forward, step back routine, sometimes 2-1 and sometimes it feels like 1-2. Mostly the former, though. From the long view Peter is doing exceptionally well, but that doesn't make the day-to-day any easier. The countdown to April 10th is getting shorter. We're hoping for a tube removal (tube count down to 0), or at least with it being only supplemental. They'll check his voice and do a swallow study that morning, followed by an appointment with the surgical team that afternoon.
The tube removal will mean Peter can swim again, which will signal real recovery for him. They'd said that somewhere around 6 weeks you start to feel somewhat normal, and at 6-8 month you'll suddenly realize you're yourself again.
Peter has been out to the Depot in Hillsborough twice, and for a quick trip to the mall once. Visitors are welcome now, but do be prepared to do all the talking, and to discourage Peter from using his voice. It came back for one sentence yesterday, then left again. That little bit is encouraging.
On Saturday, Peter's birthday, a crew from the Schley Grange came to mow again. Kim Greer, Billy Latta, and Don Blake really put the place in great shape in short order.
That morning Rodger Tygard stopped by with some home-grown corn from his freezer for me, and a piece of framed art for Peter. I cooked the corn with some lima beans, and Peter had me freeze some for when he can eat.
Janet Stolp came out with an iPod touch (complete with music). Mary Anne Handy sent balloons, and Peter got tons of other gifts, flowers, cards and calls. Thanks to everyone.
I've been able to get outside more myself...have taken a couple of horseback riding lessons, been reconditioning some of the pastures, tilled a little, and yesterday I took my bike out for the first time this season in preparation for a May 20th Triathlon (my first). It is a baby one (2, 10, 225), but plenty of challenge for me.
Being out of the office, I am aware how much more I move here on the farm than I do at work. There always seems to be something that needs doing!
I have managed to keep writing my newspaper column through this...here is Sunday's: http://www.heraldsun.com/view/full_story/18059738/article-Learning-to-say--yes--to-help
The days are passing in the step forward, step back routine, sometimes 2-1 and sometimes it feels like 1-2. Mostly the former, though. From the long view Peter is doing exceptionally well, but that doesn't make the day-to-day any easier. The countdown to April 10th is getting shorter. We're hoping for a tube removal (tube count down to 0), or at least with it being only supplemental. They'll check his voice and do a swallow study that morning, followed by an appointment with the surgical team that afternoon.
The tube removal will mean Peter can swim again, which will signal real recovery for him. They'd said that somewhere around 6 weeks you start to feel somewhat normal, and at 6-8 month you'll suddenly realize you're yourself again.
Peter has been out to the Depot in Hillsborough twice, and for a quick trip to the mall once. Visitors are welcome now, but do be prepared to do all the talking, and to discourage Peter from using his voice. It came back for one sentence yesterday, then left again. That little bit is encouraging.
On Saturday, Peter's birthday, a crew from the Schley Grange came to mow again. Kim Greer, Billy Latta, and Don Blake really put the place in great shape in short order.
 |
| L to R - Kim Greer, Billy Latta, Don Blake |
 |
| L to R - Billy Latta, Kim Greer, Don Blake |
That morning Rodger Tygard stopped by with some home-grown corn from his freezer for me, and a piece of framed art for Peter. I cooked the corn with some lima beans, and Peter had me freeze some for when he can eat.
 |
| Corn still frozen |
 | |||||
| Original art |
I've been able to get outside more myself...have taken a couple of horseback riding lessons, been reconditioning some of the pastures, tilled a little, and yesterday I took my bike out for the first time this season in preparation for a May 20th Triathlon (my first). It is a baby one (2, 10, 225), but plenty of challenge for me.
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