[FROM SUSAN]
News came today (just after we opened
gifts with Jessie, Matt, Amanda, and Alejandro) that the Proton Beam
Therapy treatment in Philadelphia had been approved by Peter's
insurance. His "simulation" is set for next Thursday, January 2nd, and
treatment will start about 10 days after that. He, or we, will do an up-and-back for the 2nd.
We're
just starting to figure out the logistics of getting to and fro, but, as
we said earlier, Peter has places to stay. I think the plan is for him
to stay with his family there in the early days, and I'll mind
the farm and my work here, then I'll go up once the treatment starts to
take its
toll on him and he'll need help. Not sure when that will be, but we've
been offered an apartment for that time. So much good help.
Seems
like we have abundant help down here, too. Thanks to everyone who has
offered to pitch in one way or another. Feeling the abundance this
Christmas Eve.
So, Merry Christmas, if you celebrate
Christmas, and Happy Holidays if you don't. Looks like a lot of New Year's Day will be in Philadelphia.
Susan
Wednesday, December 25, 2013
Saturday, December 21, 2013
Getting Started Again - Two Years Later in 2013
[FROM SUSAN - December 2013]
It seems like time to revive the blog. It was in 2012 because it enabled us to let everyone know what was going on without having to tell the story over and over. It enabled us to be with our friends and talk about other things. When you're dealing with cancer you get might sick of talking about it. And, as the introvert in the family the blog helped me communicate with our loving family and friends while still maintaining some quiet space.
Right now we're both feeling great and able to do everything that needs doing. We don't need a thing, and are looking forward to time with Jessie, Matt, Amanda, and Alejandro in the next two days before they head off to visit their other families. So here's the latest:
It seems like time to revive the blog. It was in 2012 because it enabled us to let everyone know what was going on without having to tell the story over and over. It enabled us to be with our friends and talk about other things. When you're dealing with cancer you get might sick of talking about it. And, as the introvert in the family the blog helped me communicate with our loving family and friends while still maintaining some quiet space.
Right now we're both feeling great and able to do everything that needs doing. We don't need a thing, and are looking forward to time with Jessie, Matt, Amanda, and Alejandro in the next two days before they head off to visit their other families. So here's the latest:
For a brief recap, Peter was
diagnosed with esophageal cancer in 11/2011. He began chemo and radiation
in December at Duke and had surgery on March 13, 2012. He did a short
round of oral chemotherapy following surgery.
At his 6 and 12 month scans (October
and April) he was declared “clean.” By
the end of 2012 was feeling almost like himself again, exercising almost every
day and volunteering (or playing music) almost as often. In mid-October 2013 we hosted Jessie and Matt’s
wedding here…quite an affair!
But after the wedding a recurrent
tumor was identified at his 18-month CT scan on 10/31/2013. A follow up
PET scan showed no metastases, thankfully. Surgery is not an option, and
chemotherapy, while being pushed, promises little efficacy. We had been told that radiation was no longer
an option as well.
But a focused-beam radiation was offered (by Duke) since the tumor is
higher than the previously heavily radiated areas. Peter was set up (and mapped for 2-3 hours)
for this treatment and set to start 12/2, but during Thanksgiving week that
option was taken off the table-- as it was deemed too risky.
Peter feels good now and his quality
of life is great. He is able to do all of the things that give him
pleasure (see above), and able to exercise and eat well.
“Eating well” now involves a
plant-based lifestyle (whole foods, mostly organic) that shows some hope for
healing for people with cancer (with much better response numbers than chemotherapy). Many people far sicker than Peter have seen
cancers recede, go into remission, or disappear entirely. Since doing
additional research since the recurrence, my hope has gone up.
We signed up for the JumpStart
program through Wholevana (see Wholevana.com) and I am grateful to have had someone
else cooking us this wonderful food for 10 days (12/9 through 12/20). It
seemed to help Peter adjust to the dietary changes as well
Peter flew to Philadelphia on 12/18
to see a doctor there who offers a proton beam therapy, which is another kind
of radiation that, to simplify, doesn’t go all the way through so is
potentially less damaging to adjacent organs, tissues, and structures.
He is waiting for word that he can
be enrolled in the clinical trial there.
If so, he’ll be in treatment for 7 weeks in Philadelphia most likely
starting in January. Thankfully, Peter
has family there and an offer of an apartment through some family friends. Talk about blessings. But that’s as far as we’ve gotten towards
planning. Just a wait and see situation and a "take things one-step-at-a-time" opportunity.
After Peter got sick in 2011 I
ratcheted my work back to half-time with the Johnson Intern Program. I am grateful for the wonderful people I work
with and their generosity in giving me time off as needed both then and now.
Peter and I are thankful for all of
our good friends and wonderful family who were so supportive through the 2012
ordeal. Keep praying or shining the light or doing whatever it is you do
in 2014. And we wish you all the best in
this Holiday season.
Love, Susan
Wednesday, October 31, 2012
Peter in the news
[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!
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!
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
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