[By Susan]
Among the things Peter has stayed involved with since his diagnosis last year (November 17) is the Murphey School Radio Show (murpheyschoolradio.net). The next show will go up this weekend, at 3 and at 7 on Saturday, November 3rd.)
His job is primarily to get media coverage, and he does a great job at this. I just saw that the Independent covered the event, and featured a picture of Peter to head the article.
He won't like that, but I do, and think it quite fitting. Here's the link:
http://www.indyweek.com/indyweek/the-murphey-school-radio-show-brings-together-a-community-its-artists-and-old-time-charitable-barn-raising/Content?oid=3182060
Come to the show if you can!
Wednesday, October 31, 2012
Tuesday, October 23, 2012
ALL GOOD
Some details will follow, but for now know that the news is good. There is no cancer! Hallelujah!
[BY SUSAN] It has been a LONG time since we've written anything here. Once life got somewhat back to normal (the "new normal," the docs call it), I think that this blog became associated with being sick...with all those months of hospitals and clinics and feeding tubes and such. Neither one of us wanted to go there, even when the news was good (which it has been thus far).
The new normal has been pretty good! Peter looks great, has gained weight, and rarely misses a day of exercise...lifting weights and/or swimming. We put a deer fence around the garden and there is a new bush or bench down there every time I come home from work (planted or built by Peter). He's playing music, singing, and hanging out with friends. I am working part time and enjoying a great group of new interns, plus the pleasure of working with alumna Tricia Lindley. Holli and I finished the triathlons we entered back when Peter was in the hospital, and I am keeping on with running and riding (both bikes and horses). Amanda and Jessie are close by (with Alejandro and Matt), and now we're planning a wedding. It is a good life.
On October 5th Peter went back to see Dr. Seth Cohen, the otolaryngologist who worked with restoring Peter's voice. You may recall that in May Peter had some collagen injected into the paralyzed vocal cord to "plump it up" and hopefully restore his voice, which it did. He had one or two follow-up appointments in which we found that the cord was still paralyzed from the surgery, but the cords were touching, and thus making a voice that still sounded like Peter.
I was not able to accompany Peter to that meeting because of work commitments, so I don't know the details (such as...is the cord still paralyzed?), but the good news is that Dr. Cohen told Peter not to come back! The collagen would have been completely reabsorbed by now, and they don't expect the voice he has now to deteriorate. So...Peter can talk and sing. Good news indeed, and no more interventions needed.
Right now I am writing from Clinic 3-2 in the new Duke Cancer Center, and Peter is down in another wing getting a CT scan. This is the first scan since the one immediately following surgery. We delayed it a bit, because we wanted some time for normal life before returning to the ups and downs of scans and decisions. We asked some hard questions at the last oncology visit, and there isn't much to be lost by waiting a few extra weeks.
The new hospital is nice, and right now the waiting room is sparsely populated...which I take as good news (not as many sick people as they expected?). I ran a 5 mile run this past Sunday to support this place and don't know how much they raised or what it goes to support.
Well, look for something here in the way of a report this afternoon or evening. We meet with the surgeon at 12:15 and the oncologist after that. The oncologist ran in the same race last Sunday, but finished the half-marathon. I saw her shortly after and she said that she'd wanted to quit on some of the hills, but reminded herself that her patients can't quit, so she kept running. Her time was pretty good!
Until later, lift up whatever it is you lift up in the way or prayers or petitions. We'd like more of this new normal, please.
The new normal has been pretty good! Peter looks great, has gained weight, and rarely misses a day of exercise...lifting weights and/or swimming. We put a deer fence around the garden and there is a new bush or bench down there every time I come home from work (planted or built by Peter). He's playing music, singing, and hanging out with friends. I am working part time and enjoying a great group of new interns, plus the pleasure of working with alumna Tricia Lindley. Holli and I finished the triathlons we entered back when Peter was in the hospital, and I am keeping on with running and riding (both bikes and horses). Amanda and Jessie are close by (with Alejandro and Matt), and now we're planning a wedding. It is a good life.
On October 5th Peter went back to see Dr. Seth Cohen, the otolaryngologist who worked with restoring Peter's voice. You may recall that in May Peter had some collagen injected into the paralyzed vocal cord to "plump it up" and hopefully restore his voice, which it did. He had one or two follow-up appointments in which we found that the cord was still paralyzed from the surgery, but the cords were touching, and thus making a voice that still sounded like Peter.
I was not able to accompany Peter to that meeting because of work commitments, so I don't know the details (such as...is the cord still paralyzed?), but the good news is that Dr. Cohen told Peter not to come back! The collagen would have been completely reabsorbed by now, and they don't expect the voice he has now to deteriorate. So...Peter can talk and sing. Good news indeed, and no more interventions needed.
Right now I am writing from Clinic 3-2 in the new Duke Cancer Center, and Peter is down in another wing getting a CT scan. This is the first scan since the one immediately following surgery. We delayed it a bit, because we wanted some time for normal life before returning to the ups and downs of scans and decisions. We asked some hard questions at the last oncology visit, and there isn't much to be lost by waiting a few extra weeks.
The new hospital is nice, and right now the waiting room is sparsely populated...which I take as good news (not as many sick people as they expected?). I ran a 5 mile run this past Sunday to support this place and don't know how much they raised or what it goes to support.
Well, look for something here in the way of a report this afternoon or evening. We meet with the surgeon at 12:15 and the oncologist after that. The oncologist ran in the same race last Sunday, but finished the half-marathon. I saw her shortly after and she said that she'd wanted to quit on some of the hills, but reminded herself that her patients can't quit, so she kept running. Her time was pretty good!
Until later, lift up whatever it is you lift up in the way or prayers or petitions. We'd like more of this new normal, please.
Sunday, August 12, 2012
Health, Farm News, Music, Branching Out
[By Peter]
Tomorrow marks the 5-month surgery date. Here's an update of a few things:
1) Overall health is good, lab reports, e.g., cell blood counts, are all OK. Despite a good voice, a vocal cord is still paralyzed. When the collagen wears off, I can undergo a permanent procedure to move the cord over. There's a chance it may get better on its own or even stay the same, which would be OK. Still learning how to eat slower with smaller portions.
2) I took myself off the oral chemo drug about 1/2-way through the recommended 15 weeks- it was making me too lethargic and weak.
3) Exercise continues well. I tried cycling today- only went ten miles and struggled at times as stamina isn't what it should be yet. Still lifting Junior Division weights and swimming every day. The Sportsplex has required that I join a Remedial Treadmill Class, for people who slip off the back while it's moving.
4) Farm news- Cledus the Mule is terrific, getting friendlier all the time. He likes whole pears and chews like he's an Equine Juicer, i.e., when he chomps the pear, green juice runs down his mouth and nose like he's a juice faucet. Susan rode him the other day and he was a good boy.
5) A great choice of events on Saturday night, August 18-
A) At the Cat's Cradle in Chapel Hill, "Healin' With A Feelin'- A Night Of Burnin' Love"; a benefit for the NC Jaycee Burn Unit at UNC-Hospitals. Organized by Kim and Stephanie Anderson to recognize Kim's successful recovery from burn injuries. The event raises money to buy sun-protective clothing and gear for discharged patients. A silent auction at 7 PM and four terrific music groups. See Susan's column in today's Chapel Hill Herald:
http://www.herald-sun.com/
B) Red's Rhythm featuring the phabulous Stacey Curelop at The Depot in Hillsborough, 8:15 PM;
C) Dinner at the Schley Grange, 5-7 PM, corner of Highway 57 and Schley Rd., Northern Orange County.
6) Our good friend Holli Crawford gave another blood platelet donation at the Red Cross in Durham this weekend. Please contact me if you're curious about doing this and want to learn more.
7) Music- I've been branching out with different kinds of music. Here are a few photos of me with a mariachi band in Carrboro and with Yo Yo Ma's Silk Road Ensemble last year:
Tomorrow marks the 5-month surgery date. Here's an update of a few things:
1) Overall health is good, lab reports, e.g., cell blood counts, are all OK. Despite a good voice, a vocal cord is still paralyzed. When the collagen wears off, I can undergo a permanent procedure to move the cord over. There's a chance it may get better on its own or even stay the same, which would be OK. Still learning how to eat slower with smaller portions.
2) I took myself off the oral chemo drug about 1/2-way through the recommended 15 weeks- it was making me too lethargic and weak.
3) Exercise continues well. I tried cycling today- only went ten miles and struggled at times as stamina isn't what it should be yet. Still lifting Junior Division weights and swimming every day. The Sportsplex has required that I join a Remedial Treadmill Class, for people who slip off the back while it's moving.
4) Farm news- Cledus the Mule is terrific, getting friendlier all the time. He likes whole pears and chews like he's an Equine Juicer, i.e., when he chomps the pear, green juice runs down his mouth and nose like he's a juice faucet. Susan rode him the other day and he was a good boy.
5) A great choice of events on Saturday night, August 18-
A) At the Cat's Cradle in Chapel Hill, "Healin' With A Feelin'- A Night Of Burnin' Love"; a benefit for the NC Jaycee Burn Unit at UNC-Hospitals. Organized by Kim and Stephanie Anderson to recognize Kim's successful recovery from burn injuries. The event raises money to buy sun-protective clothing and gear for discharged patients. A silent auction at 7 PM and four terrific music groups. See Susan's column in today's Chapel Hill Herald:
http://www.herald-sun.com/
B) Red's Rhythm featuring the phabulous Stacey Curelop at The Depot in Hillsborough, 8:15 PM;
C) Dinner at the Schley Grange, 5-7 PM, corner of Highway 57 and Schley Rd., Northern Orange County.
6) Our good friend Holli Crawford gave another blood platelet donation at the Red Cross in Durham this weekend. Please contact me if you're curious about doing this and want to learn more.
7) Music- I've been branching out with different kinds of music. Here are a few photos of me with a mariachi band in Carrboro and with Yo Yo Ma's Silk Road Ensemble last year:
Sunday, August 5, 2012
Off the Xeloda
It is time once again to refill our salt shaker.
You may remember that the last time I refilled it the stopper came out as I was salting Peter's dinner, and the whole thing dumped into his meal. Rather than confess, I tried to scoop all the excess salt out of his food, but it didn't work. He wrote about it in a post he titled "Assalted."
A lot has transpired since that post. That was early January, partway through the chemo and radiation and over two months before Peter's surgery. We're four and a half months post-surgery now, and I am still surprised by the ups and downs of recovery.
Many of the recent downs have been caused by the oral chemo (Xeloda). After seeking numerous opinions, Peter gave it a shot on the outside chance that it might do him some good. The full prescription would be for five cycles of three weeks, with two weeks on the drug and one week to recover. In the first two rounds he was mostly ok until the last few days of the second week, and then he seemed to recover pretty quickly. Both times, in those bad days, he considered quitting, but he really wanted to make it to the halfway mark if possible, and he did.
Throughout the weeks on the drug Peter seldom missed a day of working out. He and our friend Joe Coates lift weights together every other day, and Peter swims laps in the pond almost every afternoon, always accompanied by our four dogs. Our new pup, Shady, is an enthusiastic swimmer and does her own laps, often for as long as 20 minutes at a stretch.
Peter started the third round of Xeloda sometime around the 23rd of July. By Friday, the 27th, he was feeling so bad that he was seriously considering quitting the drug, but it was a heavy decision and very difficult for him. We left that day for our friends Emily and Evan's wedding celebration in North Georgia. That night Peter felt so bad that he chose to quit and did not take the evening dose of the chemo.
The next day our good friends Marty and Wendy drove up from Atlanta to see us, and with them we walked a short (50 yards) but steep distance from our cabin to the main building at Blackbear Lodge. Peter became so weak that we commandeered a golf cart to take him the rest of the way and then back to the cabin. I was worried he would fall out of the cart.
But once he got back to the cabin and cooled off and drank some, he was fine. We spent the afternoon in the pool and the evening playing fiddle tunes with the Georgia Mudcats (and I danced). It was a very fun day despite the scare, and we enjoyed sharing the weekend with Amanda and Alejandro as well. Amanda and Emily have been friends since they met in Spain in High School.
On the drive home Peter started feeling bad again around Burlington, and was so out-of-it by the time we got to Hillsborough that he asked me why I was turning onto St. Mary's Road. When we got to our house he could not get out of the car, but would not let me take him to the doctor.
I was scared, and called Jessie to come be a reinforcement, and we got him in the house. Again, once he got horizontal he improved dramatically. He even went to a Grange event just a couple of hours later, but we wouldn't let him drive.
So it was clear to me that this was a blood pressure problem, but the question that remained was why had his bp crashed? By thinking back through the events of the past 24 hours and asking Peter questions, we realized (with the help of his oncology PA, Margot), that Peter had thrown up Sunday night and then not had anything to drink but coffee and coke (both dehydrating) in the 18 hours or so since.
So now he has staying hydrated added to his must-do list, but he had to pay attention to that during the radiation treatment, too. Hopefully, off the Xeloda, the digestive issues will ease, the appetite will return, and along with that more energy to do the things he is eager to do.
Peter's voice is still hanging in there, but with occasional hints it might be fading. Tomorrow morning (6th) he has appointments both with his oncologist and to have his vocal cord checked again. Cross your fingers on the latter.
Peter's voice is still hanging in there, but with occasional hints it might be fading. Tomorrow morning (6th) he has appointments both with his oncologist and to have his vocal cord checked again. Cross your fingers on the latter.
This past weekend Peter was able to play with his band for the wedding of two former interns from the program I work with. So-- two delightful weddings two weekends in a row. That band, Red's Rhythm is playing again at the Depot on the 18th. Mark your calendars.
I am working half-time this year, and planning a fall garden for the first time in years. We're getting a deer fence put up in time to break ground really soon. Any and all suggestions welcome!
Susan
Wednesday, July 11, 2012
I'm in my sixth week of a recommended 15-week regimen of an oral chemo
drug. The routine is two weeks on, then one off. At the end of each of
the two weeks on it I've felt pretty bad, like I did when I had
pre-surgery chemo and radiation. I've tried to fight through the
lethargy and low appetite and have considered bailing out on the drug
(Xeloda), but am not quite at that point yet, especially because the
week off the drug is supposed to be restorative.
When I returned home after the March surgery, walking up and down our long driveway was part of daily rehab. One of my favorite and most faithful "coaches" and all-around best supporters was Geoff Hathaway. Geoff, a great bass player and music associate, is a very positive, enthusiastic person with a lot of energy. His encouragement helped when I didn't feel like exercising, when I would have preferred to sleep inside. We all need friends like Geoff- in sickness and in health.
Lately I've had the pleasure of watching and hearing Geoff and his old friends play in the music building. His alma mater, St. Augustine's College in Raleigh, asked him to put together a band to play at a homecoming football game this coming fall. This "all-alumni band" features players who played in Night Wind, a funk/R&B group that Geoff put together in the early 80's (all are from back in the day except the son of the guitarist). The group has come from all over the East Coast to practice. That's Geoff second from left:
When I returned home after the March surgery, walking up and down our long driveway was part of daily rehab. One of my favorite and most faithful "coaches" and all-around best supporters was Geoff Hathaway. Geoff, a great bass player and music associate, is a very positive, enthusiastic person with a lot of energy. His encouragement helped when I didn't feel like exercising, when I would have preferred to sleep inside. We all need friends like Geoff- in sickness and in health.
Lately I've had the pleasure of watching and hearing Geoff and his old friends play in the music building. His alma mater, St. Augustine's College in Raleigh, asked him to put together a band to play at a homecoming football game this coming fall. This "all-alumni band" features players who played in Night Wind, a funk/R&B group that Geoff put together in the early 80's (all are from back in the day except the son of the guitarist). The group has come from all over the East Coast to practice. That's Geoff second from left:
In farm news, Susan and I travelled over the weekend to Wilkes County to buy Cledus the Mule. Why,
you ask?! Hey, because he's a handsome guy and we needed one. Our
friend Holli tells us that she put his photo on Facebook,which I've never
used, and that he already has lots of fans:
Susan is in Greensboro this week on a retreat for her work, but promises to write here on the blog when she gets back.
That's it for now!
Monday, June 25, 2012
[BY SUSAN]
Sunday night Peter and I went to a wonderful Vince Gill concert at DPAC.
Our delightful daughters threw us a 30 Year Anniversary party in 2011 (we're at 31 now). After all these years, this song (performed Sunday night) was moving.
Here's an older version for you to enjoy:
Look At Us by Vince Gill
Sunday night Peter and I went to a wonderful Vince Gill concert at DPAC.
Our delightful daughters threw us a 30 Year Anniversary party in 2011 (we're at 31 now). After all these years, this song (performed Sunday night) was moving.
Here's an older version for you to enjoy:
Look At Us by Vince Gill
LIFTING AND UPLIFTING
[FROM PETER]
Susan and I haven't written here as frequently as we used to, as there haven't been many dramatic or new developments. Here's where things are 3 and 1/2 months post-surgery.
Susan and I haven't written here as frequently as we used to, as there haven't been many dramatic or new developments. Here's where things are 3 and 1/2 months post-surgery.
First off, my voice is back about 90%. That may be temporary, due to the injection of collagen into the paralyzed vocal cord about a month ago. But it could also be the healing of the damage to the nerve that was done during surgery. We're hoping for the latter, of course, but time will be the determining factor.
As you may know, the post-surgery pathology report was good - the cancer had not spread to the lymph nodes and the surgery excised the tumor (clean margins), but there were still cancer cells in the tumor - so not as promising as it would have been had the radiation/chemo of 5 weeks erased the cancer entirely.
In early May
my Duke oncologist recommended that I undergo 15 weeks of oral chemo
("Xeloda," an form of 5FU) to address possible remaining cancer cells. We, especially
Susan, had strong reservations about this. Susan objected to the fact
that the drug had no demonstrated efficacy for my kind of
cancer/treatment, and that the drug's side-effects, e.g., to the immune
system, could be significant. It has been used for other cancers-
breast, colon- that have metasticized. I worried that resumption of
chemo meant a return to the lethargy, poor appetite, low mood, et. al.
that came with the pre-surgery chemo. Thanks to daily exercise, I'd been
feeling better and stronger and was wary of sabotaging that progress.
After a lot of input from family and friends, some of whom are doctors, I decided to try out the Xeloda, knowing that I'd stop it if I lost too much weight or became too fatigued to exercise. The routine is seven pills a day, two weeks on and one week off, for 15 weeks. After the first three weeks, I felt only twinges of fatigue and low appetite, which passed during the week off the drug. I was okay enough to exercise without missing a day.
Susan and I give major credit and appreciation to Duke on several fronts. The Medical Center and Hospital have been outstanding in their timely and clear coordination and communication about appointments, test results, et. al. The various departments with which I'm involved- Radiation, Oncology, and Surgery- have been terrific regarding their joint work. Alongside my knowledgeable and caring medical personnel, kudos go to support and administrative personnel.
With initial instruction from friend Joe Coates, I began weightlifting two months ago at the Triangle Sportsplex. I'd been concerned about looking and feeling weak, especially in the upper body. Though my initial fitness evaluation was discouraging ("Mr. Kramer has the strength of a moderately strong 12 year old female"), the every-other-day routine of lifting (very) light weights has resulted in noticeable progress. In fact, I recently earned the following Certificates of Recognition for the second quarter of 2012 from the Sportsplex:
"Most Progress, Deltoid Muscles, Junior Division"- Tied for second place
"Most Progress, Pectorals, Boys Aged 13-16"-- Honorable mention (I was eligible for this age-division because of my illness)
"Best After-Use Clean-Up Of The Abdominal Machine"- Top ten
"Worst Complainer About The Music Played Over The PA System"- FIRST PRIZE
Speaking of music, I frequently recall and give thanks for the music that lifted me up while in the hospital, songs by the Doc Branch Band, Poco, James Brown, The Beatles, and others. I've heard a lot of excellent live music lately. Cool shows attended included The BilliTones at the Caldwell Farm Fest, the Cedric Watson creole/zydeco band at the ArtsCenter, Red Rover (Tim and Susan Wells) at the Schley Grange, Vince Gill and his bluegrass band at the beautiful Durham Performing Arts Center, Lise Uyanik and the Mobile City Band at the ArtsCenter, the Stinging Blades (with Dick McPhail and Bill McCarthy) at The Depot, and the Doc Branch Band at the Durham County Library. I give thanks for the exemplary life and music of Doc Watson.
After a lot of input from family and friends, some of whom are doctors, I decided to try out the Xeloda, knowing that I'd stop it if I lost too much weight or became too fatigued to exercise. The routine is seven pills a day, two weeks on and one week off, for 15 weeks. After the first three weeks, I felt only twinges of fatigue and low appetite, which passed during the week off the drug. I was okay enough to exercise without missing a day.
Susan and I give major credit and appreciation to Duke on several fronts. The Medical Center and Hospital have been outstanding in their timely and clear coordination and communication about appointments, test results, et. al. The various departments with which I'm involved- Radiation, Oncology, and Surgery- have been terrific regarding their joint work. Alongside my knowledgeable and caring medical personnel, kudos go to support and administrative personnel.
With initial instruction from friend Joe Coates, I began weightlifting two months ago at the Triangle Sportsplex. I'd been concerned about looking and feeling weak, especially in the upper body. Though my initial fitness evaluation was discouraging ("Mr. Kramer has the strength of a moderately strong 12 year old female"), the every-other-day routine of lifting (very) light weights has resulted in noticeable progress. In fact, I recently earned the following Certificates of Recognition for the second quarter of 2012 from the Sportsplex:
"Most Progress, Deltoid Muscles, Junior Division"- Tied for second place
"Most Progress, Pectorals, Boys Aged 13-16"-- Honorable mention (I was eligible for this age-division because of my illness)
"Best After-Use Clean-Up Of The Abdominal Machine"- Top ten
"Worst Complainer About The Music Played Over The PA System"- FIRST PRIZE
Speaking of music, I frequently recall and give thanks for the music that lifted me up while in the hospital, songs by the Doc Branch Band, Poco, James Brown, The Beatles, and others. I've heard a lot of excellent live music lately. Cool shows attended included The BilliTones at the Caldwell Farm Fest, the Cedric Watson creole/zydeco band at the ArtsCenter, Red Rover (Tim and Susan Wells) at the Schley Grange, Vince Gill and his bluegrass band at the beautiful Durham Performing Arts Center, Lise Uyanik and the Mobile City Band at the ArtsCenter, the Stinging Blades (with Dick McPhail and Bill McCarthy) at The Depot, and the Doc Branch Band at the Durham County Library. I give thanks for the exemplary life and music of Doc Watson.
In the near future, please consider attending on August 18 the second "Healing With A Feeling; A Night of Burning Love" show at Cat's Cradle. Featuring four wonderful groups of old friends and organized by Kim and Stephanie Anderson, it's a benefit for the NC Jaycee Burn Center at UNC Hospital. At the Hillsborough Depot, see Mary Rocap and her band this Thursday night 6/28 and my group Red's Rhythm this Saturday night 6/30. RR features the considerable talents of Stacey Curelop with backing by Frank Hunter, Roger Jones, and Wayne Watkins.
Love to all from Peter and Susan
Tuesday, June 5, 2012
Been a while.
[BY SUSAN]
OK, it has been a while since we posted anything. I went back to work in early May, and since the last post things have gone wildly up and down, but with a positive trajectory. The pattern of improvements following disappointments has held. Right now Peter is feeling pretty normal, eating fairly well, and has good energy.
Food continues to be a big challenge. At one point Peter worried that he had a blockage of some sort. I was pretty sure he didn't, and started keeping a chart to keep up with eating successes and failures, and also to help him understand the number of calories he needed to eat every day. I divided the day into thirds, with hopes of his taking in at least 1,000 calories in each segment in order to gain weight. He seldom got to the 3k mark, but tried to beat 2,500 calories to maintain weight, which he has done.
You don't see too many vegetables in there. He's working on that, and has definitely added more fruit. Finding a way go GAIN weight in a healthy manner is challenging. The chart helped for a time--got us through a rough spot. Since then Peter has been back to the oncologist (31st) and today to the otolaryngologist.
As you know, since we saw the medical oncologist Dr. Uronis on May 1st Peter has been in a quandry about whether to take this oral chemotherapy agent that is un-tested for esophageal cancer. I was (and still am) angry at the casual way it was offered, with no evidence to back it up, and the decision foisted on the patient...who has no basis on which to make a decision. The doctor changed her own mind twice about whether Peter should take it.
The drug has been around a while and is primarily used for metastatic breast and colon cancer.
The talk of loose cancer calls made Peter afraid not to take it, but the predicted side effects worry him almost as much. It has been a tough month, but after gathering all the information he could he decided to try it, so the pills arrive at the pharmacy tomorrow. He's still working on seeing another doc at UNC for a second opinion. I hear they have decent food over there.
The typical side effects of the drug (Xeloda) are much the same as the chemo Peter had earlier--low energy, food aversion, nausea, plus foot, hand, and mouth sores. The more serious ones involve bone marrow and red blood cells. After a couple of really good, energetic days doing lots of outside chores around here, exercising regularly, and playing music Peter is really dreading taking those pills. But he has vowed to push himself to keep exercising, and also vowed that he'll stop the drug if things gets too bad. And he'll hopefully see what the UNC doctor has to say.
After getting the injection of collagen into the vocal cord on the 14th of May Peter's voice has gradually improved, but it is nowhere near normal. After a follow-up appointment today we learned that there will likely be a little more improvement before the collagen starts to dissolve. There is nothing to do but wait and see for the next couple of months. There is still a chance that the nerve could regenerate, and there is a permanent procedure that will at least give him some voice if the nerve doesn't do it on its own.
We've had some really nice times, particularly when our kids come around. Peter's sister visited and all 7 of us went bowling, which was a blast. I'll post some of those pictures when Amanda sends them. Peter won the first game and I won the second. It was fun to see all the different bowling styles among us.
Peter has continued to play music and sat in with another band this past weekend at the Depot. His band, Red's Rhythm, has a gig with Mobile City Band at the Art Center in Carrboro this Friday night (8th), and is slated for the Depot on June 30th an August 18th. He can't sing, but is enjoying playing the harmonica, and the docs said that it was good for him.
On May 20th friend Holli Crawford and I ran the Triathlon that I'd mentioned before. We had so much fun that we signed up for a longer one in late September at the outer banks.
So, life goes on. I decided to work fewer days next year (starting July), in large part because of the unknown effects of the Xeloda, which Peter will take for 15 weeks. We are blessed that Tricia Lindley, who has covered in my absence this year, can stay on and run the show for 2012-2013. The link to our work is at The Johnson Intern Program. Tricia was an intern in the program in 2008-2009. I am so looking forward to working with her in the coming year.
Thanks to all of you who read the blog and especially to all of you who have kept in touch with emails, calls, cards, and visits. Your presence has meant a lot to both of us.
OK, it has been a while since we posted anything. I went back to work in early May, and since the last post things have gone wildly up and down, but with a positive trajectory. The pattern of improvements following disappointments has held. Right now Peter is feeling pretty normal, eating fairly well, and has good energy.
Food continues to be a big challenge. At one point Peter worried that he had a blockage of some sort. I was pretty sure he didn't, and started keeping a chart to keep up with eating successes and failures, and also to help him understand the number of calories he needed to eat every day. I divided the day into thirds, with hopes of his taking in at least 1,000 calories in each segment in order to gain weight. He seldom got to the 3k mark, but tried to beat 2,500 calories to maintain weight, which he has done.
 |
| Listed by calories in descending order |
 | |
| A day in mid-May |
As you know, since we saw the medical oncologist Dr. Uronis on May 1st Peter has been in a quandry about whether to take this oral chemotherapy agent that is un-tested for esophageal cancer. I was (and still am) angry at the casual way it was offered, with no evidence to back it up, and the decision foisted on the patient...who has no basis on which to make a decision. The doctor changed her own mind twice about whether Peter should take it.
The drug has been around a while and is primarily used for metastatic breast and colon cancer.
The talk of loose cancer calls made Peter afraid not to take it, but the predicted side effects worry him almost as much. It has been a tough month, but after gathering all the information he could he decided to try it, so the pills arrive at the pharmacy tomorrow. He's still working on seeing another doc at UNC for a second opinion. I hear they have decent food over there.
The typical side effects of the drug (Xeloda) are much the same as the chemo Peter had earlier--low energy, food aversion, nausea, plus foot, hand, and mouth sores. The more serious ones involve bone marrow and red blood cells. After a couple of really good, energetic days doing lots of outside chores around here, exercising regularly, and playing music Peter is really dreading taking those pills. But he has vowed to push himself to keep exercising, and also vowed that he'll stop the drug if things gets too bad. And he'll hopefully see what the UNC doctor has to say.
After getting the injection of collagen into the vocal cord on the 14th of May Peter's voice has gradually improved, but it is nowhere near normal. After a follow-up appointment today we learned that there will likely be a little more improvement before the collagen starts to dissolve. There is nothing to do but wait and see for the next couple of months. There is still a chance that the nerve could regenerate, and there is a permanent procedure that will at least give him some voice if the nerve doesn't do it on its own.
 | |
| The intricacies of the human voice |
We've had some really nice times, particularly when our kids come around. Peter's sister visited and all 7 of us went bowling, which was a blast. I'll post some of those pictures when Amanda sends them. Peter won the first game and I won the second. It was fun to see all the different bowling styles among us.
Peter has continued to play music and sat in with another band this past weekend at the Depot. His band, Red's Rhythm, has a gig with Mobile City Band at the Art Center in Carrboro this Friday night (8th), and is slated for the Depot on June 30th an August 18th. He can't sing, but is enjoying playing the harmonica, and the docs said that it was good for him.
On May 20th friend Holli Crawford and I ran the Triathlon that I'd mentioned before. We had so much fun that we signed up for a longer one in late September at the outer banks.
So, life goes on. I decided to work fewer days next year (starting July), in large part because of the unknown effects of the Xeloda, which Peter will take for 15 weeks. We are blessed that Tricia Lindley, who has covered in my absence this year, can stay on and run the show for 2012-2013. The link to our work is at The Johnson Intern Program. Tricia was an intern in the program in 2008-2009. I am so looking forward to working with her in the coming year.
Thanks to all of you who read the blog and especially to all of you who have kept in touch with emails, calls, cards, and visits. Your presence has meant a lot to both of us.
Monday, May 14, 2012
"Just a little stick..."
Peter went in today to get the first of possibly two procedures to restore his voice. Hopefully this will be the only procedure, as patients who undergo this temporary one are less likely to need the second more permanent fix.
This fix involves injecting collagen into the paralyzed vocal cord to "plump it up" so that it touches the working one, thus closing the gap that has been causing Peter's whispers and weakness and sometimes causing him to nearly choke. Read back a couple of posts for more information on the problem.
Again, I was impressed with Dr. Seth Cohen's un-rushed way with us and with the short wait. As we were leaving I saw this poster in the waiting room and decided that every office should have this:
The procedure was pretty uncomfortable for Peter, but thankfully quick and free of the potential complications Dr. Cohen had listed (such as the needle getting clogged with the collagen). Peter had opted for the office visit version of the procedure. Also available was the hospital version that required a brief slumber under anesthesia.
Dr. Cohen numbed Peter's nasal passage, trachea, and neck. The trachea numbing involved an injection right through Peter's neck and the sudden introduction of liquid caused him to cough violently (but briefly).
A resident manned the endoscope while Dr. Cohen guided a needle in through Peter's neck. I was able to watch, and kept waiting for the needle to show up on the monitor. Instead I realized that the vocal cord was getting fatter! I have no idea how Dr. Cohen got that needle in from the back side, but he did, and the whole thing was over very quickly.
The paralyzed cord is now over-plumped, and will take a couple of weeks to get to a size that will give Peter something like a normal voice. So far his voice is less breathy, but hoarse. He should be able to cough correctly now, have less chance of aspiration, and hopefully have more strength for things like climbing stairs.
This will last 2-3 months. The (big) hope is that in this amount of time the damaged nerve will regenerate and he won't need the second procedure.
In other news, Peter is back to exercising regularly, and I've gone back to work part-time. Appetite is still an issue, as is Peter's weight. He can eat pretty well, but he is still on the learning curve of taking in small meals slowly enough and often enough.
On Peter's last night in the hospital friend Holli Crawford and I signed up for a Triathlon that is happening this coming Sunday. I've questioned my sanity many times, but right now am grateful that I had something to push me to exercise. Whatever happens Sunday (finishing is my goal), I am glad to have had time in the pool, on my bike, and hoofing it along the roads out here. It has been fun to train with Holli, too.
This fix involves injecting collagen into the paralyzed vocal cord to "plump it up" so that it touches the working one, thus closing the gap that has been causing Peter's whispers and weakness and sometimes causing him to nearly choke. Read back a couple of posts for more information on the problem.
 | |
| Just keep us posted... |
The procedure was pretty uncomfortable for Peter, but thankfully quick and free of the potential complications Dr. Cohen had listed (such as the needle getting clogged with the collagen). Peter had opted for the office visit version of the procedure. Also available was the hospital version that required a brief slumber under anesthesia.
Dr. Cohen numbed Peter's nasal passage, trachea, and neck. The trachea numbing involved an injection right through Peter's neck and the sudden introduction of liquid caused him to cough violently (but briefly).
A resident manned the endoscope while Dr. Cohen guided a needle in through Peter's neck. I was able to watch, and kept waiting for the needle to show up on the monitor. Instead I realized that the vocal cord was getting fatter! I have no idea how Dr. Cohen got that needle in from the back side, but he did, and the whole thing was over very quickly.
The paralyzed cord is now over-plumped, and will take a couple of weeks to get to a size that will give Peter something like a normal voice. So far his voice is less breathy, but hoarse. He should be able to cough correctly now, have less chance of aspiration, and hopefully have more strength for things like climbing stairs.
This will last 2-3 months. The (big) hope is that in this amount of time the damaged nerve will regenerate and he won't need the second procedure.
In other news, Peter is back to exercising regularly, and I've gone back to work part-time. Appetite is still an issue, as is Peter's weight. He can eat pretty well, but he is still on the learning curve of taking in small meals slowly enough and often enough.
On Peter's last night in the hospital friend Holli Crawford and I signed up for a Triathlon that is happening this coming Sunday. I've questioned my sanity many times, but right now am grateful that I had something to push me to exercise. Whatever happens Sunday (finishing is my goal), I am glad to have had time in the pool, on my bike, and hoofing it along the roads out here. It has been fun to train with Holli, too.
Friday, May 11, 2012
Doing OK
[BY PETER]
Today I visited the Red Cross blood center in Durham to say hey to long-time platelet center director Mary Spradlin and her colleagues. Until my diagnosis I was a regular donor and enjoyed the experience due mainly to the consistent friendliness and professionalism of the staff. They sent me several encouraging notes over the past few months and I wanted to say thank you. Mary gave me the good news that I can donate again when I reach the one-year anniversary of my last chemo session. She told me that a regular donor at the center has chosen to recruit 40 platelet donors, including many first-timers, to help her celebrate her 40th birthday.
Though I usually feel really good due to daily exercise, keeping a steady weight is still a big problem. I'm learning to eat more slowly, take in smaller portions, and eat more frequently. Not doing real well with the first item.
I'm still considering what to do about the oncologist's recommendation for more chemo. In short, I'm scared to do that (with resulting symptoms of lethargy, food-aversion, possible mood changes) and afraid not to. My inclination is to go ahead and begin use of the pills- three a day for two weeks on, then one off, for 15 weeks- and stop it if or when I decide the negatives are setting me back too much.
For those local readers, please consider dropping by The Depot in Hillsborough this Saturday night 5/12 at 8 PM to hear Red's Rhythm. Frank Hunter has been ably filling in for my vocal parts. It's discouraging not being able to sing, especially on the a cappella harmony beginnings to songs like "Heartache Tonight" (Eagles) and "When Will I Be Loved" (Linda Ronstadt). I got to participate in last Saturday night's Murphey School Radio Show, hosted by Jay Miller and Ebeth Scott-Sinclair of the Shared Visions Foundation and organized by the amazing Donna Campbell and Georgann Eubanks of Minnow Media Productions. The next show in this successful series is set for the first weekend in November.
I was also able to return to a Grange meeting this week- very satisfying to be among those generous and kind friends again.
Today I visited the Red Cross blood center in Durham to say hey to long-time platelet center director Mary Spradlin and her colleagues. Until my diagnosis I was a regular donor and enjoyed the experience due mainly to the consistent friendliness and professionalism of the staff. They sent me several encouraging notes over the past few months and I wanted to say thank you. Mary gave me the good news that I can donate again when I reach the one-year anniversary of my last chemo session. She told me that a regular donor at the center has chosen to recruit 40 platelet donors, including many first-timers, to help her celebrate her 40th birthday.
Though I usually feel really good due to daily exercise, keeping a steady weight is still a big problem. I'm learning to eat more slowly, take in smaller portions, and eat more frequently. Not doing real well with the first item.
I'm still considering what to do about the oncologist's recommendation for more chemo. In short, I'm scared to do that (with resulting symptoms of lethargy, food-aversion, possible mood changes) and afraid not to. My inclination is to go ahead and begin use of the pills- three a day for two weeks on, then one off, for 15 weeks- and stop it if or when I decide the negatives are setting me back too much.
For those local readers, please consider dropping by The Depot in Hillsborough this Saturday night 5/12 at 8 PM to hear Red's Rhythm. Frank Hunter has been ably filling in for my vocal parts. It's discouraging not being able to sing, especially on the a cappella harmony beginnings to songs like "Heartache Tonight" (Eagles) and "When Will I Be Loved" (Linda Ronstadt). I got to participate in last Saturday night's Murphey School Radio Show, hosted by Jay Miller and Ebeth Scott-Sinclair of the Shared Visions Foundation and organized by the amazing Donna Campbell and Georgann Eubanks of Minnow Media Productions. The next show in this successful series is set for the first weekend in November.
I was also able to return to a Grange meeting this week- very satisfying to be among those generous and kind friends again.
Tuesday, May 1, 2012
Back to Duke
[By Susan]
We've had some great guests lately - last weekend Peter's college friend Jeffrey Johnson was here and helped me coax Peter out for a meal at Thai Cafe in Durham. Peter's side-effects through this ordeal have involved food aversions and nausea. For me-- I can't seem to get enough curry in my system.
Peter's oldest friend (from first grade!) Evan Rashkoff and his wife Clare were here this past weekend. We had some great times together that included cycling the American Tobacco Trail (Clare was on her in-line skates) and celebrating our 31st anniversary with Evan and Clare plus friends Joe Coates and Geri Dawson.
Evan is an orthopedic surgeon and accompanied us to Peter's appointments on Monday. Evan will write a "guest blog" soon, but in the mean time I'll tell you a little bit here. We have a lot to decide.
One appointment was about Peter's voice loss, which is the result of damage to the left vocal nerve due to retraction during surgery (which can't be avoided). The left cord is paralyzed, and stuck in the slightly open position.
One option was a short-term fix of a collagen injection to the vocal cord, which would "plump it up" and allow the right cord to make contact, and therefore make sound. They didn't offer vocal therapy (coaching) but apparently this is a standard part of the package, so we have to ask about that. This short term fix could be done with a very brief general anesthesia, or with local numbing in the office. That's a choice to figure out. We forgot to ask if Peter could get his lips done at the same time.
Often the nerve will regenerate/repair over several months so that the second option isn't necessary, but it is there if Peter needs it - a "remedialization" of the left vocal cord, which is basically "shimmed" into place. Our anesthesiologist friend Bret Stolp said that this is done with the patient awake, so that they can try out the different positionings until they hear what sounds like their own voice.
I am not going to say much about the oncologist visit because I am pretty emotional about it...the offer of more chemotherapy despite the fact (and the doctor said this several times) that there is no evidence or proof that taking it would be helpful at all.
It is a drug used for metastatic breast and colon cancer (Xeloda). It is a series of pills taken at home...two weeks on, one week off, times 5 rounds for 15 weeks total....nearly four more months of...a long list of side effects. I think, but am not sure, that Peter would be part of a clinical trial.
Offering this just when Peter is exercising (cycling, swimming, and weight-lifting) and starting to feel strong and gain weight really knocked me for a loop. After seeing how well Peter is doing the doctor said that his current regimen might be just as or more effective than the chemo, but once you offer it, the "what if" factor looms large and taunts us. And there is just no way to know. It might do more harm than good.
WWHD - What would Hippocrates do?
First, do no harm.
We've had some great guests lately - last weekend Peter's college friend Jeffrey Johnson was here and helped me coax Peter out for a meal at Thai Cafe in Durham. Peter's side-effects through this ordeal have involved food aversions and nausea. For me-- I can't seem to get enough curry in my system.
Peter's oldest friend (from first grade!) Evan Rashkoff and his wife Clare were here this past weekend. We had some great times together that included cycling the American Tobacco Trail (Clare was on her in-line skates) and celebrating our 31st anniversary with Evan and Clare plus friends Joe Coates and Geri Dawson.
Evan is an orthopedic surgeon and accompanied us to Peter's appointments on Monday. Evan will write a "guest blog" soon, but in the mean time I'll tell you a little bit here. We have a lot to decide.
One appointment was about Peter's voice loss, which is the result of damage to the left vocal nerve due to retraction during surgery (which can't be avoided). The left cord is paralyzed, and stuck in the slightly open position.
Often the nerve will regenerate/repair over several months so that the second option isn't necessary, but it is there if Peter needs it - a "remedialization" of the left vocal cord, which is basically "shimmed" into place. Our anesthesiologist friend Bret Stolp said that this is done with the patient awake, so that they can try out the different positionings until they hear what sounds like their own voice.
I am not going to say much about the oncologist visit because I am pretty emotional about it...the offer of more chemotherapy despite the fact (and the doctor said this several times) that there is no evidence or proof that taking it would be helpful at all.
It is a drug used for metastatic breast and colon cancer (Xeloda). It is a series of pills taken at home...two weeks on, one week off, times 5 rounds for 15 weeks total....nearly four more months of...a long list of side effects. I think, but am not sure, that Peter would be part of a clinical trial.
Offering this just when Peter is exercising (cycling, swimming, and weight-lifting) and starting to feel strong and gain weight really knocked me for a loop. After seeing how well Peter is doing the doctor said that his current regimen might be just as or more effective than the chemo, but once you offer it, the "what if" factor looms large and taunts us. And there is just no way to know. It might do more harm than good.
First, do no harm.
Sunday, April 22, 2012
RECOVERY - Week 6, A Word from Peter
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
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
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.
Friday, March 30, 2012
RECOVERY - WEEK 3, Friday UPDATED
March 30, 2012
Both daughters/partners are out of town this weekend, but Jessie and Matt stopped by today on their way to the mountains and we had a great visit. Amanda was here yesterday, with a set of light weights and a "Superman" T-shirt for Peter ("Because he is," she said).
Today has been spent walking, mostly, and we finally made the trip to the dump, stopping by to see friend Gayle Dauverd and her new puppy, Baxter, on the way. Her dogs (and Gayle) made Peter smile.
Small kindnesses mean a lot - and there are so many that I can't list them all. But our mechanic, Tim Hull, dropped of my repaired tiller as a favor, and I finally got out to till some ground today. It still seems a bit damp in the garden, and I don't have the hang of this rear-tined machine. But it turned up some dirt. I fully believe the science that shows that being dirty makes us happy...to a point, at least, and since my diet is all vegetables and fruit now, I figure I should grow some. I am trying to squeak in some plants before it gets too late.
Our friend Joe Coates has been out here every day, coaching Peter through some of his exercises, encouraging him to walk, keeping him awake, and giving me a break. Joe is a lot of fun to be around, and I've enjoyed the opportunity to visit with him, too. His curious spirit reminds me a lot of my father's, and he is fun to explore ideas with.
I wrote my bi-weekly newspaper column this morning, and am about to go out and trim some donkey and horse hooves. The day is just too beautiful to stay indoors.
Big night tonight...we went out to the Depot where a friend Sally Deaton's blues band is playing. We didn't stay long, but saw a lot of friends, and Peter's backpack (with the pump) worked well. The night out also got Peter to bed later...another help towards getting him off of his hospital-nocturnal habits.
Despite having the larger, longer lasting formula bags, I found that the tube itself tended to get gunked up if I don't flush it every four hours. Fortunately my old "dorm mother" skills of waking up and getting back to sleep are still employable, and the schedule isn't too rough. I set the coffee pot at night so it is waiting on me in the morning. And, fortunately, sleeping until 9 is an option if I need it.
Tomorrow is Peter's birthday and sadly the thing I'd ordered him didn't arrive. But I've come up with another plan. His email address is greenriverband@aol.com if you want to send greetings.
Both daughters/partners are out of town this weekend, but Jessie and Matt stopped by today on their way to the mountains and we had a great visit. Amanda was here yesterday, with a set of light weights and a "Superman" T-shirt for Peter ("Because he is," she said).
Today has been spent walking, mostly, and we finally made the trip to the dump, stopping by to see friend Gayle Dauverd and her new puppy, Baxter, on the way. Her dogs (and Gayle) made Peter smile.
Small kindnesses mean a lot - and there are so many that I can't list them all. But our mechanic, Tim Hull, dropped of my repaired tiller as a favor, and I finally got out to till some ground today. It still seems a bit damp in the garden, and I don't have the hang of this rear-tined machine. But it turned up some dirt. I fully believe the science that shows that being dirty makes us happy...to a point, at least, and since my diet is all vegetables and fruit now, I figure I should grow some. I am trying to squeak in some plants before it gets too late.
I wrote my bi-weekly newspaper column this morning, and am about to go out and trim some donkey and horse hooves. The day is just too beautiful to stay indoors.
Big night tonight...we went out to the Depot where a friend Sally Deaton's blues band is playing. We didn't stay long, but saw a lot of friends, and Peter's backpack (with the pump) worked well. The night out also got Peter to bed later...another help towards getting him off of his hospital-nocturnal habits.
Tomorrow is Peter's birthday and sadly the thing I'd ordered him didn't arrive. But I've come up with another plan. His email address is greenriverband@aol.com if you want to send greetings.
Thursday, March 29, 2012
RECOVERY - WEEK 3, Thursday
03-29-12
I am at the same place I was last night--- Oh yeah. I haven't posted anything today.
What I can report is that there seem to be incremental improvements each day. The night was better. I put some melatonin into the tube flush at bedtime, and I can confess that now since I told the oncology nurse today. Peter isn't on any other meds, so there is nothing to interact with except himself.
That and the other tactics (no iPad, meditation) seem to have made for a better night. Not perfect, but heading in the right direction if we can keep it going.
And he stayed busy again today...a road trip to the dump (which was closed), a stop by Underwoods for gas for the lawnmower (some sense of normalcy), and several walks, one with Joe, and another with Holli (who helps keep the barn running).
The vet came today for spring shots. I sprayed weeds, dragged the arena, and Holli and I went for a run. Now I have to write a column for the Chapel Hill Herald and right now I have no opinion about anything (very rare for me!).
If you're up for a visit, I think we're getting to that place. Peter still has no voice, so you have to work on asking yes or no questions and doing most of the talking. Taking him somewhere might be good. His days need to be busy so he'll stay awake and sleep at night. Come take a walk with him.
Best to communicate through email. If you don't have his address, send a note here and I'll get back to you.
Thanks for keeping up with this saga.
Susan
I am at the same place I was last night--- Oh yeah. I haven't posted anything today.
What I can report is that there seem to be incremental improvements each day. The night was better. I put some melatonin into the tube flush at bedtime, and I can confess that now since I told the oncology nurse today. Peter isn't on any other meds, so there is nothing to interact with except himself.
That and the other tactics (no iPad, meditation) seem to have made for a better night. Not perfect, but heading in the right direction if we can keep it going.
And he stayed busy again today...a road trip to the dump (which was closed), a stop by Underwoods for gas for the lawnmower (some sense of normalcy), and several walks, one with Joe, and another with Holli (who helps keep the barn running).
The vet came today for spring shots. I sprayed weeds, dragged the arena, and Holli and I went for a run. Now I have to write a column for the Chapel Hill Herald and right now I have no opinion about anything (very rare for me!).
If you're up for a visit, I think we're getting to that place. Peter still has no voice, so you have to work on asking yes or no questions and doing most of the talking. Taking him somewhere might be good. His days need to be busy so he'll stay awake and sleep at night. Come take a walk with him.
Best to communicate through email. If you don't have his address, send a note here and I'll get back to you.
Thanks for keeping up with this saga.
Susan
Wednesday, March 28, 2012
RECOVERY - Week 3, Wednesday
03-28-12
I suppose we can start counting the weeks now, instead of the days. Surgery was on a Tuesday, the 13th.
I thought I'd written something this a.m. and wouldn't need to write tonight. Darn. I am tired, but not sleepy. I think you call this weary.
I think last night was a little better, but not sure Peter would agree. We came up with some other sleep tactics and hope they work tonight. I am trying to stay awake long enough to add more formula and get myself to bed. We have one of the larger formula bags tonight, so I should be able to sleep through for once. No alarms last night, thankfully.
We kept Peter pretty busy and awake all day, and allowed him one 30 minute nap this afternoon. He walked a lot, and did stretching exercises with Joe and meditation with me. I see small improvements in everything but his mood.
Now has a chair in the bedroom and a plan to get up and read if he can't sleep. No iPad within reach.
Hopefully we'll be home more tomorrow and I can write more. Our big plan for the day is a trip to the dump with the garbage and recycling.
SG
I suppose we can start counting the weeks now, instead of the days. Surgery was on a Tuesday, the 13th.
I thought I'd written something this a.m. and wouldn't need to write tonight. Darn. I am tired, but not sleepy. I think you call this weary.
I think last night was a little better, but not sure Peter would agree. We came up with some other sleep tactics and hope they work tonight. I am trying to stay awake long enough to add more formula and get myself to bed. We have one of the larger formula bags tonight, so I should be able to sleep through for once. No alarms last night, thankfully.
We kept Peter pretty busy and awake all day, and allowed him one 30 minute nap this afternoon. He walked a lot, and did stretching exercises with Joe and meditation with me. I see small improvements in everything but his mood.
Now has a chair in the bedroom and a plan to get up and read if he can't sleep. No iPad within reach.
Hopefully we'll be home more tomorrow and I can write more. Our big plan for the day is a trip to the dump with the garbage and recycling.
SG
Tuesday, March 27, 2012
RECOVERY - Day 14 end
Maybe this day was a notch above so-so, though Peter seemed to rate it lower. His friend Joe Coates and I kept him busy and awake. He puttered around the yard and got to town, with a stop by one of his favorite places, Dual Supply.
I went to the dentist and the grocery store...
...bought a lot for a household with just one eater! I made a big pot of chili (spicy, the way I like it) in honor of the cooler day and night. Better eat it quickly.
We'll see how the night goes. Thanks to all.
SG
I went to the dentist and the grocery store...
...bought a lot for a household with just one eater! I made a big pot of chili (spicy, the way I like it) in honor of the cooler day and night. Better eat it quickly.
We'll see how the night goes. Thanks to all.
SG
RECOVERY - Day 14
Early after Peter's diagnosis I had a work-related meeting with the Reverend Lisa Fischbeck, who said something that has stuck with me...that although Peter and I would be going through this journey together, our experiences would be very different. That's true enough to seem obvious, but I had not considered it. Remembering Lisa's words gives me the opportunity to step back from my own experience and consider Peter's.
That difference manifested itself last night. I slept well, and only had to get up once at 3:30 to refill the formula bag. Peter, on the other hand, was restless most of the night. He was already up at 3:30, and I heard the sounds of his iPad a few other times when I rolled over into slight consciousness. Though he is in his own bed, where he has wanted to be, the fact of sleeping "tethered" is difficult.
I think he is beginning to switch out night and day. As soon as I took him off of the feeding tube this morning he took a shower, got back into bed, and fell into a deep sleep. Yesterday he slept a good part of the day, and he has "closed his eyes" again just now. A nurse I spoke with was quite firm about not letting the nocturnal habit develop, and so I've created a "busyness" plan for today. It includes activity here (like putting laundry away), his regular walks (the nurse said bump them up to 5 or 6 a day), and accompanying me to town for my dentist appointment, grocery shopping, and a couple of other errands.
The loss of voice makes things more difficult, because when Peter is around someone, he naturally tries to talk (whisper) and the doctors are telling him to rest his voice. Being around people is good for him. Talking is not.
A friend sent us the bible story from Luke about Zechariah getting his voice back when he named his son (John, as in The Baptist). I sure I hope I don't have to have a late-life pregnancy like Elizabeth for Peter to talk again! Surely there is an easier way..
Oh, and I love JTB's dreadlocks.
That difference manifested itself last night. I slept well, and only had to get up once at 3:30 to refill the formula bag. Peter, on the other hand, was restless most of the night. He was already up at 3:30, and I heard the sounds of his iPad a few other times when I rolled over into slight consciousness. Though he is in his own bed, where he has wanted to be, the fact of sleeping "tethered" is difficult.
I think he is beginning to switch out night and day. As soon as I took him off of the feeding tube this morning he took a shower, got back into bed, and fell into a deep sleep. Yesterday he slept a good part of the day, and he has "closed his eyes" again just now. A nurse I spoke with was quite firm about not letting the nocturnal habit develop, and so I've created a "busyness" plan for today. It includes activity here (like putting laundry away), his regular walks (the nurse said bump them up to 5 or 6 a day), and accompanying me to town for my dentist appointment, grocery shopping, and a couple of other errands.
The loss of voice makes things more difficult, because when Peter is around someone, he naturally tries to talk (whisper) and the doctors are telling him to rest his voice. Being around people is good for him. Talking is not.
A friend sent us the bible story from Luke about Zechariah getting his voice back when he named his son (John, as in The Baptist). I sure I hope I don't have to have a late-life pregnancy like Elizabeth for Peter to talk again! Surely there is an easier way..
Monday, March 26, 2012
RECOVERY - Day 13, Long night, long day
All day I kept thinking about writing, but I was either too busy or too tired.
On a good note, I found several 4-leaf clovers today, and a patch of some unusual ones that fool me into thinking they have 4 leaves, but they don't.
That first night managing the feeding tube and pump felt a little like a first night home with a new baby. Peter isn't a baby, of course, but figuring out the timing of the formula, and having to wake up to re-fill it, and two other times when the alarm went off (the tube had kinked) felt a lot like those long-ago sleepless nights, and equally well worth it.
Peter used to be a very light sleeper, but the hospital taught him to sleep right through beeping alarms and people (me) coming in and fiddling with things. At least I am not sticking him.
I learned the wake-up-and-go-back-to-sleep skill when I was an RA (dorm mother) at Hendrix College in AR and then here at Duke. I think I once put out a small fire and fell right back to sleep.
I think we officially graded this a less than so-so day. Peter doesn't feel well, but he did manage to get three walks in. The first was with Amanda, and the second two with me. I had to prod a bit for the third, but he was glad he did it.
Still no voice, so email him to get in touch.
The night before Peter came home from the hospital I had planned to stay in Durham, but he went to bed so early it seemed silly not to drive on home. Holli Crawford was farm-sitting, and together we managed to sign ourselves up for a triathlon in May. It is a relatively easy one..with a 2 mile run, 10 mile bike ride, and 225 yard swim. So today I took myself out for a run, and it felt great. I didn't worry about speed (not that I ever do), but I just kept moving. It improved my spirits considerably, and I hope that the sleep that I do get tonight will be deeper because of it.
My friend Rose Wilson keeps her horse, Virgil, here and was out riding today. Rose has had her share of hospital visits, many of them as the result of horse activities. She came up to the porch where we were sitting and found us feeling a bit glum. Later she wrote this to me, and she really described the mood we were sitting in:
I was telling John about how Peter was
doing, and he and I both remembered that big emotional letdown after coming
home from the hospital. It’s as though you have to be holding it together
while you’ve got the hospital staff around you all the time, and you’re
having to be cooperative with what they’re doing for you, and then when
you get home and can let go a bit, all the feelings of weariness, sadness and
anxiety come flooding in. I know he knows that he just has to let them come--going
with the flow is the easiest way through. I expect you’re feeling much
the same, Susan.
I think we both felt better for having had Rose articulate what the day felt like.
I just re-filled the bag with the formula that feeds Peter through the night. We have 5 hours before it needs the last two cans. Time for us to try to get some sleep. Hoping for no alarms.
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