[FROM PETER]

Hey to all-

Susan and I have received a lot of advice from you about healthy foods that can also produce weight gain. Evan, my oldest friend who's a surgeon in Connecticut, has reminded me of the inevitable weight loss to come. His medical advice is welcome, but not as much as his ability to make me laugh. It's a great friend when you can happily regress with him to when you were both 14. More than once, a middle school teacher made us sit in front of a class after we were caught passing immature notes back and forth.

Today was a good day for the Heart of Carolina Food Drive. Coordinated by the Food Bank of Central and Easten NC (FBCENC) and WTVD/Channel 11, the event collected food at all Kroger stores. Durham Operations Manager Pete Sloane  and I are pictured with food donor Steve Stroud. He told us that he's a painter and was off work today. He saw the Food Drive on a live noon news report and decided to come right over. When I thanked him for his generosity (9 pre-packaged boxes woth over $100), he patted his stomach and said, "I figure I'm getting along okay so now I can help someone else." The FBCENC covers 32 counties and distributes food to 800+ partner organizations (food pantries, shelters, soup kitchens, et. al.). I got involved after meeting Pete Sloan, an all-around good guy and talented manager.

Many of Kim and Stephanie Anderson's friends received a message from Stephanie today, her final note on the CaringBridge site: http://www.caringbridge.org/visit/kimanderson2. Kim experienced severe burns in a 3/10 house fire and has recovered well after great support from his family, friends, and the UNC Hospital Jaycee Burn Center. Check out their story and how the Anderson Family has given back to the Burn Center. As you'll read, music has played a large part in their efforts. The Gladin-Kramers can draw on the Andersons' courage and perseverence in the months to come.- Peter K

[FROM PETER]


Hey to all-  


I'm scheduled for a cardio-thoracic (I keep wanting to spell it "thorassic", like "Jurassic") MRI next week. After that and one more scanI hope that radiation/chemo can begin.

Susan's helping me keep my weight up. I'm currently at 190 ibs., or what the body-mass index calls a mid-normal weight for my height. But I've also lost way too much in the past three months. Any advice on gaining weight?

Tonight I'd like to keep it light with some fun old band photos featuring my friend Roger Jones. I wrote a newspaper story last year about Roger's work at Freedom House Recovery Center ( http://www.heraldsun.com/pages/full_story/push?article-Freedom+House+a+center+for+music-+too%20&id=9610856). 


Here's a recent photo of Red's Rhythm- PK, Roger, Stacey Curelop, Frank Hunter, and Wayne Watkins:

A photo of Roger's band "The Readings" from 1965 (I can't tell which is Roger, who was 13 at the time):

And Roger, on the right (above), with "Manifest Destiny" in 1968:


At our last gig, a whole table of women kept yelling "We love you, Roger!" Easy to see why....Love to all- PK

[FROM PETER]
Because Susan asked me to, and because I'm curious about doing it, I'll occasionally write about experiences over the next few months. Though I've written frequently about friends (musicians, writers, community volunteers, et. al.), for area publications, I'm self-conscious about a more personal account, especially about an illness like cancer, but it may be fun.

I've never been on Facebook or Twitter and have never even sent a text message. This is partly because I've never felt the urge and partly because I'm not the brightest bulb in the IT chandelier. For a high school reunion a few years ago, I was on Classmates for about 5 days but felt so irritated with the constant messages that I asked them to get me off it. The site reminded me that I had signed a contract to stay on it, and when my efforts of sending mail to spam were unsuccessful, I threatened to contact the N.C. Attorney General's office. This ultimately worked. Earlier this year, I was informed that a class action suit against Classmates was successful and I was entitled to a ten cent reward.

I've been trying to swim or bike every day. Yesterday I was driving towards town and the pool at the Triangle Sportsplex. Feeling listless but trying my best to exercise for at least a few minutes, a song came on the radio that changed my mood for the better. It was "Hickory Hollow", a banjo/mandolin instrumental from the The Dillards first album ca. 1963. I can't explain it, but the joyiful tune, similar to that of the old standby "Cripple Creek", just made me smile and gain strength. The Dillards acted as the "Darling Family" on 4-5 Andy Griffith Shows in the early to mid-60's; check out this clip: http://www.youtube.com/watch?v=qFwgzOxs0yM&feature=related. The Andy Griffith Show and music lyrics will be frequently cited on this blog.

Last night there was a practice of Red's Rhythm, a band I'm in with Stacey Curelop, Frank Hunter, Wayne Watkins, and Roger Jones. Stacey brought a Lady Gaga song for us to learn- I forget the name- and though we all agreed that Ms. Gaga is pretty weird, we liked the song. At the end there's a chord progression that sounds exactly like that of "Can't You See" by the Marshall Tucker Band (ca. 1973) and "Hey, Jude", so we worked those into our arrangement as well. When we weren't laughing, we thought it sounded not bad.

I'm waiting on 2 radiology scans (this week?) to be scheduled before I can start the radiation/chemo treatments. Everyone's expressions of love and support have been wonderful. Susan and our daughters Amanda and Jessie are blessed by your generosity and friendship.- Love, Peter K

To comment...

It helps to have a google account, which is free.  That should make it easy.  I think you just need to go to google.com (or gmail.com) and set up an account.  I've been really happy with gmail, but you don't have to use it...just get yourself an account.  ---Susan

Surgery began at 12:12 pm. Peter was in good spirits. I am in the Courtyard Garden with Jessie, Amanda, and Janet Stolp. More later.

DETAILS OF THE LONG DAY

[FROM SUSAN]

Well, the bath did me in last night, and I am finding that going back over the many, many details of the day yesterday is almost overwhelming, but let me try to tell you what I can, and I'll leave it to Peter to fill in the details.  We took a lot of notes.

First off, I've learned the debilitating power of despair, and what a difference hope can make. I guess the most memorable part of the long day for me was waiting in the examining room for the surgeon to come tell us the results of the PET/CT scan that Peter had very early in the morning.  That result would tell us if the cancer had spread elsewhere, or was contained to the tumor site.

We had a couple of hours after the scan and before that appointment, and I hauled us through the bowels of the hospital and Med School to the Divinity School where the Refectory Cafe has the only wholesome food I saw all day (until we got to Elmo's that evening).  Hanging out at the Div. School, where the lounge was clearly more "student" (think This End Up) than "waiting room," was a respite for me.

But, back to the examining room, the first person who came in was a smiling 2nd year student, and while he was kind and engaging, I quietly hoped to myself that he would not be the one to tell us the news.  His own nervousness almost outmatched mine, and I wanted someone to come talk to us who clearly knew what to do.  Bless the student; he'll be that person someday, but not quite yet.

Thankfully, that person arrived!  It was Cathy Hogan, Dr. D'Amico's NP, and she was the perfect person to guide us through the next hour or so.  She delivered hope, and competence, and a look-you-in the eye earnestness that we appreciated, but she was light-hearted, too, in a way that was comforting.

Let me say that throughout the entire day no one seemed rushed, and for that I am extremely grateful.  We had a couple of longish waits, but nothing terrible.

Cathy told us the good news that I wrote here briefly yesterday--that the PET/CT scan did not show any evidence of cancer elsewhere in Peter.  So the official diagnosis for now is T3, N1.  T3 means stage three, and that is the best that anyone who has symptoms of esophageal cancer (dysphasia) is going to get.  T4 would mean that the cancer is elsewhere.  N1 means that there is 1 lymph node that is enlarged, but it is right there in the area of the tumor so, again, somewhat to be expected with what is presenting.

Nurse Hogan (what do you call NPs?) had not gotten the concerning piece of news from Tuesday's EUS that the tumor was mighty close to the aorta, so when I asked that question (note...questions are IMPORTANT), she went back to look at the scan, and reported that there appeared to be a "fat pad" between the tumor and the aorta.  I don't think I've ever been so thankful for fat before. However, despite what the PET showed, they are scheduling a cardiac MRI just to be sure.  If the aorta is involved, they we'll have to scrap the plans we have and start over.

Dr. D'Amico (who was out of town), Cathy Hogan, Scott Balderson (another NP with D'Amico), and Dr. Hope Uronis (medical oncologist), and her nurse, Amy George clearly function as a team, and they all wear pink on Thursdays (note...wear pink on Thursdays to impress), and they seem to like each other...which was also comforting to me.

Dr. Uronis came in to explain the chemotherapy side of things.  She had the same look-you-in-the-eye focus and made things sound not-as-bad as I'd expected.  Peter will get radiation (more on that further on) 5 days a week for 5-6 weeks, and chemotherapy one day a week.  The radiation place has its own parking lot, and you pull in, go in for half an hour, and leave.  They think that most of the time Peter will be able to drive himself.  We joked about making the whole procedure a "drive through operation," like at a bank or McDonald's.

The chemo will take 5 hours, and there is another weekly appointment in there somewhere I think.  Peter is going over all the notes as I write...

This will all start about mid-December, after the MRI and another CAT scan that is used for the radiation team to design Peter's personal therapy.

That takes us to the SUB-basement where we met Dr. Pretesh Patel and Dr. Christopher Willett.  Waiting for them got to be difficult because we had not eaten anything since 9 a.m., and it was now moving towards 3 p.m.  I dashed up to the hospital "Food Court" where I'd found some yogurt before, but that was all locked up now.  The only options were (I kid you not) Starbucks or Subway.  We didn't need coffee and pastries, and there wasn't time to wait for a sandwich, so I grabbed two pretty awful cookies and an equally awful bag of chips.  My blood sugar was falling fast, and my mood with it.  

Peter was back in the examining room when I returned.  He ate the chips and I nibbled the chocolate chips out of the stale cookies, and that at least held us until we could get out of there and to an early dinner with our wonderful daughters.

Dr. Patel came in first.  He looks like a cross between one of Peter's cousins and Jessie's partner, Matt.  He was absolutely wonderful.  I am sure it was late in a long day for him, too, but he was not rushed, and walked us through all the steps with grace and ease.  I was impressed that he included both of us so fully in his delivery.

Dr. Willett came in a bit later, and was equally re-assuring, but also cautious about the aorta.  He said that one problem with more-and-more sophisticated imaging equipment is that it enables them to see more---and when they see something, they have to check it out.  So we're waiting to hear from them with an appointment for the MRI and CAT.  They weren't sure if they could be done on the same day.

Once that is done, we'll start the 5-6 week course that I described above, and then there will be a wait for "healing" and after a couple of weeks some of the preliminary work for surgery will begin (more scans).  After at least two more weeks, the surgery will take place, but they could require more weeks of rest and healing.  "There is a minimum, but no maximum," they told us.

Surgery will require 10-14 days of hospitalization (though Peter says "no way" to that length of time), and 4-6 weeks to get back to anything semi-normal, and they said, honestly, 4-6 months before "you look around one day and realize, 'I feel like myself again.'"  That will be a sweet day.

We ended the long day with our daughters and a good meal at Elmo's, where we go when we know we can't handle any surprises.  I had texted them on and off throughout the day, and their being there, poised to come if we needed them, meant so much.

In the mean while, your many messages of hope, inspiration, humor, song lyrics and suggested movies have warmed us and buoyed us in ways that you will never be able to imagine.  Thank you for being there.

Good News

We're home now, utterly exhausted (at Duke from 6:00-4:30), and I'll write more after a bath.

BUT, I know many of you are eagerly awaiting news, and we're happy to report that the PET/CT scan did not show any metastases.

The road ahead is long and hard, and other complications could arise, but for now the news is good.

Susan