The Waiting Game

[BY SUSAN]

I don’t know what to compare this to.  Certainly not something exciting like a birthday or Christmas.  Not anything ominous, like a hurricane, though one seems to be brewing on the other side of this ocean of expectancy.

What we’re waiting for is Peter to feel better.  We’re waiting for energy and appetite to return.  Since his diagnosis in November, this life of illness and treatment has become the “new normal,” and we want the old normal back.

All through the chemotherapy there were some really good days here and there (plus a couple of neutral ones and a couple that were pretty bad each week).  With chemo ending on January 19^th , I think we expected an upward trajectory.   Maybe we weren’t listening the day when they told us that “radiation effects are cumulative.”

 Peter’s last really good days were January 28^th and 29^th, when his band, Red’s Rhythm, played at the Depot in Hillsborough (see previous blog).  He hadn’t felt well prior to the 28^th, but the high energy of that night continued right through Sunday for Peter, such that he even went out and split some wood.

Then things declined.  The last day of radiation was Tuesday, the 31^st, and Peter was too sick for either of us to feel like celebrating.   Today marks the two-week post-treatment date, and every day had been pretty much like another, with no appetite, little energy, weight loss, and a few meals each week that refuse to stay where they belong.  Peter had a cold at the end of January and the cough and runny nose are hanging on.  Still, the doctors tell us this is all “as expected.” 

I think it is more like the diagnosis our dog, Buddy, got at the vet’s.  I saw “ADR” written on his chart and asked what that meant.  “Ain’t Doing Right,” was Dr. Bianco’s reply.  These days Peter is ADR.

Still, Peter’s mood has been mostly positive.  He’s had a lot of visitors, and really enjoys those.  He continues to orchestrate music events, and looks forward to those coming to fruition (Green River Band reunion gig here at the house March 10^th).  Our friend Joe Coates has been a constant support, and he and Peter urge each other to exercise when neither really feels like it.  Joe came over and cut a tree for Peter this week.

On the occasional day when Peter feels a little better we assume that THIS is the beginning of the improvement, and we latch onto that hope.  In this period between treatment and surgery he is supposed to return to some robustness, gain weight, and be in the best possible shape he can be in for surgery.  Two weeks have gone by and we haven’t set foot on that path yet. 

But yesterday held a spark of hope.  Peter went swimming at the Sportsplex, had a band practice, ate three meals, took a long walk in the woods with his dogs, split a few logs (!) and it is nearing 9 p.m. and he’s still up and moving and downright perky.  We will see what tomorrow will bring. 

People ask me how I am doing and I never know quite what to say.  I say fine and most days I am fine, just putting one foot in front of the other to get things done so I can take off of work for the surgery.  Most days I plod along and this new normal is simply what is.  I am eating really well and riding my horse, doing some yoga, and most nights I sleep pretty well.

But Friday things caught up with me for some reason.  Trying to help Peter to eat (and drink and take his meds) gets really frustrating for both of us.  Nothing was particularly worse on Friday, but I woke up teary and stayed that way all day.  One of the priests at work (Tammy) asked me how I was and saw my tears well up, which I’ve always found embarrassing for some reason.  I seem to remember some early 60’s song that declared, “Big girls, they don’t cry-y-y,” that my family sang, so maybe I took it to heart. (Peter just informed me that this is one of the first records he ever bought…and corrected the decade I’d put it in).

So it seems that some days the immensity of Peter’s illness breaks through and catches me off guard.  Most days I keep busy and some days are really joyful, as when we were interviewing for new interns last week.  But the looming surgery is such a big unknown, and I haven’t tackled it the way I tackle most things…by finding out everything I can about it.  In this case, knowing seems scarier than not-knowing.

I realize that this disease is giving me some real opportunities to learn about myself, for Peter and me to learn more about each other, and for us both to see immense the web of support that we have.   

Each one of you gives me that support when you ask, “How ARE you.”  Some days I’ll give you my elevator-speech answer and that is the best I can do at the time.  Some days I’ll just start talking, and what I say will help me figure out the answer to that question, because I really don’t know.

Delay to March 1st

[BY SUSAN]

Every other week I write a column for the Chapel Hill Herald, and this blog seems to have become my in-between week writing.  Peter tends to write the blog on my column weeks, or so it has worked out well.

Peter wrote this week, and reported on the music that gives him so much joy and energy.  If you saw the performance on Saturday night you would not have known Peter was sick.  He'd worried about needing a stool to sit on at some point, but once the music got going, I don't think the thought crossed his mind.  So many of our wonderful friends came (including a contingent from my work!) that we both felt incredibly blessed by all of you.

What he didn't say is that these past two weeks have been the worst in many ways, and it was pure miracle (and positive energy) that enabled him to sail through the gig on the 28th and carried him through an energetic Sunday, even splitting a few logs in the woods.  Can you guess that Monday was a crash day?

It was also the next-to-last day of radiation, when all the cumulative effects of both treatments seemed to gather in force.  They wreaked havoc on his stomach, and he didn't eat (or keep down) much of anything Monday or Tuesday, and the radiation staff threatened heavily (hospitalization and feeding tubes get mentioned) at that last visit.

I've been pushing the eating tactics I learned when pregnant.  Eat lots of small meals (the docs have said this from the get-go), eat the BRAT diet (bananas, rice, applesauce, toast), and use saltines to settle the stomach before larger meals.  But when Peter feels bad, and I am not around to push, he has such an aversion to food that it is hard for him to walk into the kitchen.  Lately, even food odors (especially onions cooking) turn his stomach.

Wednesday was another little-intake day.  That night I went to the store and bought lots of what I refer to as "junk food"---highly processed, packaged, and convenient.  That last adjective made it worthy for the cause.

I also discovered (at my sister's suggestion) that Peter had not been taking his anti-nausea, pro-appetite meds (she suspected this because he's a guy).

I came home with the stash of food, and distributed it all over the house, in the places where Peter sits during the day, and splayed out across the main kitchen counter.

On Thursday morning, before work, I engaged the second strategy, which was to create a Google doc with time slots every 2 or so hours, and send it out to family members and a few close friends (some medical professionals thrown in the mix), asking them to choose a time in which to call Peter to encourage him to eat and ask him if he'd taken his meds.  I send a list of the food that is easily available to him.

At some point on Thursday Peter called me and asked, "Are you siccing people on me?"  I fessed up.  Later he heard me refer to the email I'd sent.  "There's an email?" he asked.  That night he took note when I referred to the schedule.  "A schedule too?"

Yes!  And it is working.  He nibbled all day on Thursday and felt better.  He followed suit on Friday and was even able to go swim some laps.  In another week or so the effects of all this assault on his system should start to recede, and he should start to feel like himself more and more.  In the meantime, the calls and prods are working.

Because of his nausea and weight loss the docs moved the date of the follow-up diagnostics to March 1st.  I am grateful for this.  His body will have more time to heal, and the inflammation from the  radiation will have had time to go down, so they will be able to see things more clearly on the scan.  This delay won't necessarily push back the date of the surgery, which will probably still be mid-to-late March.

On another note, the Johnson Intern Program, where I work, is supporting me whole-heartedly by bringing in alumna Tricia Lindley to serve as interim director during the time of the surgery.  I will be able to be completely un-plugged from work during this time, which is a real gift.  Peter and I continue to marvel at our good fortune for having good medical care so close-by, having our daughters right here in town, Peter's recent retirement and my having a supportive workplace, and of course all of our wonderful friends.  If you're reading this, you're in that contingent, and we appreciate you more than you can know.

Oh, and if you want to give Peter a call, be my guest!

--Susan

"Take Me Home...."

[BY PETER]

The last few weeks have been especially terrific for music. On January 20, I went with my old college friend Marty, up from Atlanta for the weekend, to see the Harvey Dalton Arnold Blues Band (HDABB) at The Depot. Harvey gives every performance 150% effort, and with Kim Shomaker, Darrell Young, and Tim Carrey, he has found three musicians to not only keep up with him but push him to new heights in playing and singing. In less than 2 years, they're revived old blues material in fresh ways and written new songs that already sound like classics. The Depot crowd loved their last song, "There Goes Another Love Song", made famous by The Outlaws when Harvey was a member ('76 - '80). Check out HDABB at Durham's Casbah Club on Friday night, Feb. 10. You may want to check out an article I wrote about the band for the Burlington, N.C., newspaper:
http://www.thetimesnews.com/articles/local-33568-band-new.html

The next night was a blues/funk/rock/jazz jam at the farm. Organized by the always enthusiastic bassist Geoff Hathaway, participants included vocalists Sallie Deaton, Jennifer Evans, Lopaz Evans, Lynne McGhee, and Page Hathaway; guitarists Jay Cunningham and Charlie Ebel; drummers James Norwood and Rodger Tygard; The Mudbone Blues Revue (Sallie's band); saxophonists Rev Ransom and Jay Miller; keyboardist Zina Smith; and flautists Bev Scarlett and Holli Crawford. New to the building was Mike Spivey on trumpet/sax/ trombone. It was the first appearance by a trombone in the building, and Mike's pairings with Rev were really special.

On Saturday, Jan. 28, Red's Rhythm played to an overflow crowd at The Depot, by far our most successful of 7 appearances there. Owner Meleah Gabheart has created a comfortable, attractive venue for folks. A personal goal was for me to get through all 3 sets without having to sit down or leave the stage with some kind of discomfort, which, with the presence of the generous crowd, including many readers of this blog (thank you), worked out OK. Guest musicians included Brett Englund on guitar and Mike Bisdee (guitar), Cliff Cox (drums), and Steve Smith (keys), all former bandmates of mine. Stacey was at her usual high level of fronting the band, especially on Joan Jett's 80's anthem "I Love Rock and Roll," which I've resisted doing. I'm pleased to be proven wrong.

A few weeks ago at the hospital while waiting in the lobby for exams and my last chemo appointmet, a hospital volunteer asked small groups of those waiting if they'd like to hear her play and sing something. She broke into "Take Me Home, Country Roads" by John Denver. I sang along a soft harmony on the chorus. She looked my way and nodded, which meant either "oh, cool, someone is singing along" or "be quiet, this is my gig." Along with friends Harvey, Janet Stolp, Stacey, and Callie Warner, I've been a similar volunteer at UNC-Hospital with its Door To Door program.

Finally, I received three CD's today from Al Dawson, whose present band is the Billitones (with Lew Wardell, Toni Stevens, Bill Stevens, and Tim Madigan). I've listened to Al, a great singer/guitarist, since 1974 in many configurations, e.g., Weeds and The Claptones. Two Cd's were recent ones of the Billitones and the third, which I haven't listened to yet, is of classical guitar by Al. He wrote in a note of his project, Solo Deo Gloria, "I realize you are going through some tough times right now, and as I say in the liner notes, maybe you can listen to this music and get some peaceful or soothing moments from it. For me, it is the work of a lifetime, and the pieces I chose are really great compostitions in their own right no matter who plays them." Whether Al is playing the Allman Brothers "Blue Skies" or anything else, I will be moved by it.

The next music event I'm looking forward to is a jam at the farm organized by Mike Bisdee and other members of Green River, my old band from '98 - '02. The date hasn't been nailed down yet, but you all are invited.

"Let the music keep our spirits high"- an old Jackson Browne line. It's done wonders for mine.- Peter K

Sometimes Things Happen

[FROM SUSAN]
I get confused sometimes between what I have written here and what went into my bi-weekly newspaper column.  Last week I wrote there, depicting some of our last day of chemo (which contained a very long frustrating wait that was mitigated by the presence of our younger daughter,Amanda), and telling how I was cheered up, later in the day, by brussels sprouts.  Go figure.

This is the early-morning scene as I cross from the parking deck to the hospital.  Always disconcerting to consider that we actually need all this new hospital space.

This week started the same as all the others, with a 7:20 drop-off at the circle, packing in food, and thankfully no long waits before Peter got his blood pulled and we saw Dr. Uronis.  Last week was the first time that anything showed up on his labs...a slightly lowered platelet count.  He smiled at that, since he has given platelets over 60 times.  But they explained that he was far, far above the number at which he would need an infusion.

Today his white counts were a notch down, but again, as to be expected.  Overall they keep saying that he has tolerated this well.Without the long-haul of chemo, we made the trek to the sub-basement where Peter got zapped, and we were free to go much earlier than usual.  It is still exhausting, especially with Peter feeling so badly.


In regards to those reports, "as expected" turns out to be different than what we expected.  Since chemo ended last week, we expected a rebound, I think.  Peter did manage to exercise once this week, but he caught a cold, too, and so stayed in and mostly on the sofa most of the week.  Yesterday they explained that the cumulative effect of the radiation would continue to make him feel bad--weak, nauseous, and not hungry.  Reading back on the blog I see they explained the same thing two weeks ago.  Some things you just don't want to hear.

This has been the worst week in many ways, but one bright spot (of many), is that Peter is swallowing better.  I watched him down an actual sandwich the other day, and though he continues to chew thoroughly, things are definitely going down better, which could be an indicator that "the little bastard" is shrinking.


We are asking more questions of the doctors, particularly about the upcoming surgery., which is looking to be mid-March.  I always think of questions after we leave, and one from yesterday was how large was the study on which Dr. Willett was pegging his advice.  He was quick to tell us that the study looking at a non-surgical option was "small and inconclusive."  But when you compare those who have surgery with those who don't, the 5 year survival rates are about the same.  The difference, he says, is that in the non-surgical group there is more of a tendency for the tumors to return in the esophagus.


In my mind that leaves so many questions, if the survival rates are indeed the same.  What are the long-term effects of the surgery that we could compare to the risk of the tumor returning on-site?  They call this a "life-altering" surgery, in which 1/3 of the people do so well that they go home without a stomach tube, 1/3 learn to eat within a couple of weeks and lose the tube on their follow-up visit, and the last third has a really hard time with it.  How would life in the latter group compare with the risk of no-surgery?  Can anyone say?


The other bit of news is that Dr. Willett thought that the 16th was a little soon for the follow-up PET scan.  So it is possible that might get pushed back a week, which would make it the 23rd I think.  We will let you know.  On that day we want you all to circle up, hold hands, and pray, chant, dance, conjure vibes, or whatever else you can do to bring good news of no advancing disease.


Some of those other bright spots are worth mentioning.  For me, a huge one is that my workplace is bringing in a beloved alumnus, Tricia Lindley (08-09) to run the program while I am away for the surgery.  The thought of trying to juggle everything from Peter's hospital room was daunting, so this is a huge relief.  I love Tricia dearly, and she knows the program as well as anyone else, having both gone through it and also having volunteered in most aspects.  Thank you Tricia and JIP board.


Saturday night was a huge bright spot for Peter, when Geoff Hathaway organized a music jam out here for him.  I'll let him write all the details later, but he called it one of the best-ever, which is saying a lot!

We hope to see you at Saturday night's gig at The Depot in Hillsborough (www.hillsboroughdepot.com).  The rumor is that at least of of the docs is coming.

And I had my own fun attending the wedding of JIP alumnus Abigail Lee in Tarrboro with three other interns from her year.  I've had calls, visits, letters, lunches, and flowers from many of the alumni of the program, and each one has meant so much.  Thank you.


Here's a closing story from yesterday.  I can't say that we've gotten used to seeing all the other patients in chemo and radiation at Duke, but the sights have become less startling except when children are involved.  Yesterday a pajama-clad lad strolled in with his bouncy little sister.  His head was shaved, and bore the target marks of radiation (Peter has them on his chest).  The little guy stopped in his tracks in front of an amputee sitting across from us.  The mom came up and told the child to "say hello," which he did, but then he asked "What happened?"


The entire room was holding its breath, and after a pause the amputee answered, "Sometimes things happen."  The mother urged her son on, and we all started breathing again.  Yes they do.

Body Talk, Monster Maul, and "The Little B_ _ tard"

Hey to all - A quick note about where the treatment's at. Today was the final scheduled chemo and tomorrow will be the 22nd of 28 radiation sessions. There was a slight weight gain over the week, which had the usual pattern of, say, three good days followed by two w/ little energy. On 2/16 a PET scan will clarify the status of of the tumor, or as I hostile-y refer to it, "the little bastard." Please forgive the profanity but it deserves it.

I had a terrific session w/ Toni Stevens (www.tonistevens.com), a practitioner of Reiki and Body Talk. What resonated with me about Toni is how her work would help me relax and rest, and boy, was she right. She says, and I believe her, that this work can put folks in better shape for surgery. Toni's husband Bill, is a musician friend of 40 years standing and a key figure in many Durham ventures of all kinds, including his Chameleon Club on Chapel Hill Road.

For those readers in the area, please consider dropping by The Depot in Hillsborough on Sat., 1/28 at 8 PM to hear Red's Rhythm perform. Led by the luminously talented Stacey Curelop, we play current covers with a nice mixture of Beatles, Motown, and Stones. Our strength is vocals, particularly on vocal duets by Stacey and Frank Hunter. My favorite song they do is "Stop Dragging My Heart Around" by Tom Petty and Stevie Nicks. Folks often like to eat at the Hillsborough Barbeque Company next door, then wander over to The Depot for dessert, ice cream, and beer or wine and the music.

Yesterday, my friend Joe Coates, who performs everything he does with impressive expertise, helped me cut down a large oak for next year's firewood supply. Splitting wood by hand with a "monster maul" is tiring but satisfying. And speaking of satisfying, people continue to express their support to our family in wonderfully generous ways. With tougher times ahead, we will never forget the gifts of friendship we receive and hope that we will be able to pay them forward and back.

-Peter K

Chemo Day 4

[FROM SUSAN]

This is our fourth trek to Duke for what we have come to refer to as "chemo days."  Duke has proven to be surprisingly easy to navigate on some levels, but we still get the floors confused because each one pretty much mirrors the other. 

Our "territory" ranges from the second floor treatment rooms to the sub-basement (white zone) where he gets radiation.  On "just radiation" days there is a small parking lot just outside the radiation clinic door.  On chemo days we can’t park there, and so I drop Peter off to save time in the early mornings.

Routines develop.  Of all the trips we’ve made here, only two appointments have been in the "new" hospital—Duke North.  But each week Peter points to the entrance of North when we pass it and says, "That’s where we're supposed to go."  And I ask him if his appointment is the same place as last time, and he says, "Yes."   So I make a left turn towards Duke South, and he stays worried until we get to Trent Drive.  At that point he sighs and says, "oh, yeah."

Duke South has a drop-off circle with two entrances.  Just inside the Morris entrance is a painting of one of the benefactors to the hospital who was a friend of our friends, the Lachman family.  His nickname was "Hi."  Every week Peter sees the painting through the glass as we pull into the circle and says "Hi Hi."  Then I let Peter off and head to  the parking deck.

I smiled to myself as I pulled into the deck today, realizing that I was now an "old timer" here, knowing to pass all the open spots on row 1-C to circle up to 2B, which is closer to the door that leads to the walkway to the clinic.


There was a bit of a wait in the clinic this morning due to a glitch in the scheduling.  But the doctors never seem rushed, and even today, having had to work us in, they were downright chatty.  Dr. Uronis says she's coming to hear Peter's band play on the 28th (details below).

A couple of things about Duke are curious, though.  One is that despite a high-tech online registration and reporting system, we filled out an awful lot of repetitive paper work over and over in our early days here, and most days Peter has to fill out the same sheet in both clinics.

The other curiosity is that despite the Hippa law, and Duke’s attempts to comply (with signs and restaurant type buzzers), they still walk out and holler your full name across the crowded waiting room.  Peter has asked that they not do this…but the practice continues.

Peter seems to start feeling better on chemo day, and both his appetite and his energy stay up for about three days after.  Then there is a so-so day (we should expect that on Sunday if the pattern holds) and then two to three bad days, which entail some GI distress, low energy, weakness, and absolutely no appetite.  Peter finds any mention of food to be repulsive.  He keeps losing weight, which is concerning.

The oncologists explained that the radiation will start to take an additional toll on his energy and his appetite.  Dr.Willett and Nurse Celia are really getting after him about eating and drinking, especially the latter.  Dr. Willett said that patients sometime have to be hospitalized due to weight loss and dehydration.  And, in fact, one of our friends who has been through a similar ordeal was admitted twice.

Getting enough calories into Peter is challenging even when he has an appetite, and is just impossible when he doesn’t.  Those days are real frustrating for both of us.  

Next Thursday is the last chemo, and a couple of weeks after it Peter should start feeling better...maybe even in time for his gig.  After the last chemo and radiation he'll have a break for at least a month before surgery, which will be a time to try to pack the pounds on.  Then start the diagnostics that lead to surgery.  That feels like a great unknown to us right now.

[FROM PETER]

Readers of this blog are encouraged to come out and see Red's Rhythm at The Depot (www.hillsboroughdepot.com) on Saturday night, Jan. 28 at 8:15 PM. Good time rock n' roll and things to eat and drink. Also, on Sat. night, January 21 at 8 PM, there's a party/music jam at the farm organized by my good buddy Geoff Hathaway. This session has no other agendas besides good fun and music. There's a core band of players (R&B/soul/blues/funk), but if you're a musician and you want to play, please get in touch with me at 452-8873.- Peter

ASALTED

[BY PETER]

Today I finished the third week of the 5 and 1/2 week regimen of radiation (5x/wk.) and chemotherapy (1x/wk.). Vital signs look good and the weight loss has stabilized with the help of a prescribed medication. After we returned home, Susan and I took a long walk with Buddy the Border Collie to the Little River and back.

Tree near Little River

 We both felt good and strong today. Susan is trying out a month of a vegan diet, which I seem to confuse with a "wiccan" diet. If any of you know the difference, please set me straight.

Susan has taken a strong interest in good nutrition as a means of wellness and disease-prevention and -cure. She reads constantly and discusses the issues with both believers and skeptics alike. Though Susan fully agrees that I need to maintain and gain weight (I'm 6'3'' and 193 lbs. today), she'll often and rightly suggest a healthier alternative to one I might choose. But last night got a little strange.


Per her offer, I asked her to make me some lumpy mashed potatoes. I not only like the taste, but it's easy to add a lot of heavy cream and butter. Per usual, Susan suggested a few alternatives, but in my condition it's smart to go with any cravings that come up. Susan started to make them while I was in another room when I heard her cuss a blue streak. Some of you haven't seen this side of Susan, but it's true.

NOT what Susan looked like last night.

I saw her stabbing feverishly at the bowl with a spoon but wasn't sure what she was doing. At first the potatoes tasted good, but this quickly turned into a taste of one-part potato, one-part butter, one-part cream, and three-parts salt. Seems when Susan was shaking salt into the bowl, the top of the shaker came off and most of the contents poured into the bowl. She thought she had removed the excess salt, but really not. The ways of my wife of thirty years are mysterious, deep, and wise, and I'm still trying to figure out why she didn't tell me about the salt.

Re: the one-car wreck that we came upon three minutes after midnight on New Year's Day (see the previous posting), here's a follow-up. Jim emailed us to say that he's having anxiety, sweats, and nightmares. His fiancee describes the incident as surreal, almost like a dream. The good news is that Jim realizes that with time and effort he will heal. He has already met w/ an addictions counselor and an attorney and will begin participation in the fellowship of Alcoholics Anonymous. He expresses gratitude for the help he has received.

I wear my Marvin Gaye T-shirt on special occasions or when I want to feel ...well, I can't explain it. His music was really important to me and I still haven't  dealt with the reality that he died violently in 1984. Though I bought it at a Bimbe Festival in Durham about 15 years ago, it's in perfect condition. The shirt has been a great conversation starter on many occasions. Today, for example, Phyllis, a Durham native (~40 yo) who prepped me for chemotherapy, noticed the shirt, then shared information about growing up in the area, her twin 13 yo boys, and her own musical tastes. We got her email address to invite her to music happenings at the farm. As Marvin might have remarked, "Ain't That Peculiar."- Peter K

http://www.youtube.com/watch?v=Y9KC7uhMY9s