A Less Eventful Chemo Day

[FROM SUSAN]

Writing here at the tail end of 2011, and hoping that this time next year this illness and time of treatment will be long behind us.  We had a delay in posting for a number of reasons, not the least of which is that the new laptop I got to replace my old, dying one up and died as a result of an infection.  It has made its own visit to the hospital, and will hopefully be home soon.  You can send flowers c/o the Geek Squad.

Note to daughters:  Next time I WILL get a Mac.

We had wonderful holidays with our great children and their delightful partners.  We do a "Secret Santa" system among the 6 of us that has proven to be quite fun.  That was on the 21st, as Amanda and Alejandro headed off to Jamaica on the 22nd.  Jessie, Matt, and Cleveland came out for Christmas Eve and Day, and we had a sweet holiday together.

Peter felt pretty OK for those two days, and hasn't suffered many side effects beyond what is expected...and those are intermittent.  He has managed to keep exercising, which is strongly encouraged by the docs (though today they told him to do shorter workouts).  Going to radiation has become somewhat routine, with friends like Joe Coates and Allison Snyder driving occasionally.

Here are a few pictures from Christmas:

Hike in the woods

Jessie's annual tree climb

 Novel dismount

Annual portrait

Peter and friends

Chemo #2 of 5

This is Thursday, and we're in Clinic 2A, which is the chemo treatment room.  It is busier than last week, and each chemo station sounds an alarm every time anyone does anything, which gets annoying.  Note to self, next time bring earbuds or plugs.  The nurse just hooked up the actual chemo drugs, and I noticed that she put on heavy armor to do so...a protective gown and mask.  Yikes.

Jessie came for part of the chemo time today, and that was great.  She showed up just as I heard Peter say, "Netflix won't load?" and she solved the iPad problem since I am not familiar with this new toy (though it is easy to figure out so far).  She stayed on for radiation and got to meet Dr. Willett. Having both daughters here and now familiar with our routines and where things are is comforting.

Peter is happily plugging away on his iPad, though the Benadryl they give to counter any reaction to the drugs is kicking in, and he's getting sleepy.  In a few minutes I'll make the trek to Duke North and bring some food back from the cafeteria.  A lot of what we talked to the doctors about today was Peter's lack of appetite.

Duke got slammed in the news because the Physicians Committee for Responsible Medicine (PCRM), a Washington-based nonprofit that promotes preventive medicine, has ranked Duke Hospital as one of the “five worst hospital food environments” in the nation.. There are not many good options besides a big salad bar (with which Duke defended its options) and sushi...and that's in North where the "real" cafeteria is.  There is a station with "Southern cooking," and  the rest of the offerings are fried, fatty, or packaged--chips, sodas, Krispy Kreme, pretzels...you get the picture.  There is not one single organic (or local) option,  and vegans are limited to the salad bar.

In South it is almost all fast food chains, and in both places the hours are quite odd so that there there are times when there are almost no options (except Starbucks in North).  Appointment hours are hard to figure out, so a couple of times we've needed to eat when no real food was available.  Sodas and vending machines are abundantly present, even in the treatment areas.  I've started packing food in. 

Some choices in the main cafeteria:

 The one healthy choice

...and so on...

For a number of years I've read a lot about health and nutrition, and have ratcheted that up since Peter got sick.  Anticancer and The China Study cite well-done studies published in "prestigious" journals that show that diet can play a huge role in both preventing and treating cancer. In fact, PCRM says, “Research shows that high-fat, meaty diets are linked to obesity, diabetes, heart disease, and some cancers.” 

And yet, regarding Peter's need to gain weight, what we hear at Duke is "Eat what you want."  We have found that it is possible to pair high calorie foods with good nutrition.  I am trying to use "healthy" plant-based fats (though I still worry about the fats).  Today we brainstormed with the docs about some appetite-enhancing options.

These waiting areas could be little classrooms to improve the health and well-being of the hundreds of people who pass through here...people who have bumped up against their own mortality and are more likely than most to be motivated to make positive changes.  And Duke could have a tremendously positive impact on the local economy if they bought just a portion of their food from area farmers.  This is the place for education,  not vending machines.

Most other things at Duke, however, have proven to be quite pleasant.  It is easy to get in and out of here, we seldom wait long at all, and people couldn't be nicer or more supportive.  The doctors are attentive...last week they CALLED PETER to see how he was doing.  You feel like they really know you, and you get to know them.  Hospital-wide, you can't even look lost for a second but someone offers to help you out.  I envision a big party at the farm for all these people when this is over!

Today, so far, is a good day with Peter feeling healthy and eating well.  He is quite tired of talking about his appetite and food, and gets sometimes gets testy when any of us push food on him.  He feels like eating would make him sick.  But he lost 5 of the 8 lbs he's gained, and that can't keep happening.  The doctors keep telling him to eat as least 6 small meals, and to force it if he has  to.

On a happier note, Peter got excited when he learned that today's chemo nurse was named Gail Funk, and even more surprised that she didn't know what funk music was.  At the time he was listening to a boxed set of music called "The Funk Box" on his new iPad and he let her listen when "Brick House" by the Commodores came on.  She knew the song, but not that it was funk, and said she liked Z Z Top and Credence Clearwater Revival.  After listening to the music of Sam Cook and the Soul Stirrers, Peter had a (Benadryl) dream whereby he produced a recording session of Stella and gospel singer Jennifer Evans singing "Be With Me Jesus."  [Can you tell Peter dictated most of that paragraph?]

We try to hold onto the better days, squeeze all the gusto out of them, and then hunker down for the nausea, the fatigue, and those other side effects we just get tired of talking about. Fortunately, we've had far more days worth squeezing.

Love to all!

SG

PETER'S IPAD

At the suggestion of a few people who'd spent time in hospitals, Santa agreed to bring Peter an iPad for Christmas/Hanukkah.  He enlisted two elves, Matt (who happens to work for Apple) and Jessie to set it up for him.  Peter has been watching Andy Griffith shows streamed through Netflix all morning, and he beat the dealer (as such) in a song lyric game/app.  He's able to check his email, call things up on Youtube, and is learning to find all the music he wants on iTunes.  A big success so far, and will help pass the hours on Thursdays.  Thank you Santa!

Quilt and ZOOM!

 [BY SUSAN]

The beautiful quilt pictured above came in the mail a couple of days before Sharon Van Horn's visit with Peter.  In the short month since Peter's diagnosis, she somehow managed to piece this beauty for him.  Here's the inscription:

And the details:

This is the back of the quilt, and Sharon brought pens for you all to write notes to Peter with.  Please come by and get your name on the quilt!

Sharon is a pediatrician who worked with Peter in the Orange County Schools many years ago.  Sharon and I have enjoyed time together, and especially talking about health issues.  A couple of years ago Sharon studied under a fellowship with Dr. Andrew Weil.  When she drove out to the farm this past Wednesday she brought a laundry basket full of her readings for me to go over.  By the end of this I should have some sort of medical degree!

Peter has experienced a few side effects of yesterday's chemo, but overall feels pretty good.  We put the bikes in the truck and drove up to a quiet road to go out for a bike ride on this beautiful day, and from the get-go I couldn't keep up with him.  Now, that's unusual, though I haven't ridden or run much, at first due to an injury from a horse kick, and then due to sheer busyness.  But I couldn't believe how hard it was for me to pedal!

After a mile or so (which is nothing on a bike) I called Peter and told him I was going to ride home.  I figured that I'd be doing good to make it those few more miles at this rate!  After I hung up and started to push my bike back onto the road, I realized that is was hard to push.  In fact, the brake was locked onto the back wheel!
It was an easy fix, and I should have noticed that I was having to pedal downhill, but thought I must have gained a lot of weight with Peter.  I made it home with ease.

But the real point of the story isn't my difficulties but Peter's lack thereof.  Though I can get a little competitive on the bikes, I have to admit it was good to see him disappear over a distant hill, far ahead of me.

SG

Chemo Day 1, "Code Red!"

[FROM SUSAN AND PETER]

So, this will be a blog within a blog...and this is Susan starting things out.  Today was Peter's first day of chemotherapy, and it began at 7:30, and continued right on through, with just enough time for one meal just at the time that the cafeteria closes and switches from breakfast to lunch.  Keeping Peter's weight up is going to be challenging on chemo days.  I did bring some things from home, and hopefully I'll get more creative about this.

 As Peter will recount below, the chemo room (see pic) was a bit daunting.  But friend Debby Blalock came by to keep Peter company and allow me to run a couple of errands.  Debby lives nearby and will help out like this...and Peter really enjoyed her company.  When I returned the Benadryl had just about done him in and he snoozed for a while.

I'll let him tell the "Code Red" tale that took place when he awoke.  After taking a first responder course some time ago I was ready to evacuate a bit farther than the waiting room across the hall.

This entire journey has been quite a whirlwind, and with a chance to sit down with two of Peter's doctors today, we asked some harder questions, and were buoyed by most of the answers we got.  Both doctors were patient, and took all the time we needed without seeming antsy to move on.  I cannot express enough gratitude for this.

Despite the seriousness of this cancer, both doctors declared Peter's to be "curable."  So, what is a cure?  In medical terms, that means a 5 year survival rate with no recurrence.

I was also encouraged by something I read in Anti-Cancer, which got me to consider "the long tail of the bell-curve."  The author explains it through the example of Stephen Jay Gould, in a chapter called "Escaping Statistics."  At age 40 Gould was diagnosed with mesothelioma, a cancer considered "incurable," with a median survival rate (at the time) of 8 months.

Gould found a bell curve chart of his disease.  If you don't remember, they look like this (a generic one):

With apologies to my scientific friends,  I'll try to explain the hopefulness in this situation.  In Gould's case, the peak of the curve would be the 8 month mark, and half of the population would have died by then.  But Gould noticed that the "tail" of the curve, on the right hand side, went on for 25+ months, with quite a few people still alive where the chart ended.

Like Peter, Gould was otherwise healthy, and he was young.  Dr. Willet called Peter "young" today, and declared him otherwise healthy and fit.  The point of all this is that these qualities put Gould (and Peter) in good standing to reside on the right hand side of the chart, and then some.

Gould determined that he would do everything he could to put himself in the best position to ride that bell curve tail for as long as he could.  That ride lasted 20 years, and he died of a different disease.

When Dr. Uronis told Peter that he'd feel OK tonight he said, "Good, because I am going clubbing!"  She laughed, and he told her he was serious (see below) and then she remembered that he was a musician and promised to come see his band play (possibly at The Depot next month).  She told a story of going to see another patient perform, and how much it mean to her to see him being himself and not a patient.  Well, that story just won my heart. 

 Another friend, Susan Rogers, works at Duke and showed up while we were waiting down in radiation (sub basement).  Her visit brightened our spirits (after chemo), and Peter started talking in song lyrics and couldn't stop.

I'll shut up now and let Peter tell his version:   

A short item because I'm going into Durham soon to see the Harvey Dalton Arnold Blues Band at the Casbah club (more on Harvey and this great band later). Walking into a room full of patients undergoing chemo was depressing at first. There were several folks who were obviously futher along in treatment than I am. I was trying to hold off on going to the bathroom, 'cause you had to drag your chemo set-up, e.g., a tray w/ IV bags, along with you. Finally, I dragged myself to the bathroom, expecting a few moments of relief and peace. Alas, it wasn't to be.

I hear a familiar voice- Susan's- say, "Code red! Code red! You've got to hurry up!" I say back, "Leave me alone! This is just like being at home!" Turns out there really was a code red. Some smoke had gotten into the unit's ventilation system and it was unclear if there was a fire nearby. All of us made our way across the floor for a few minutes until it was determined there was no fire in the building.

Here's a great movie scene for musicians and everyone else. This Is Spinal Tap is a much-loved "mockumentary" from the early 80's. It features many inside and other jokes about a loud British band. This scene, oft-quoted by musicians everywhere, features Nigel Tufnel, the group's dim-witted guitarist, explaining that his amplifier "goes up to eleven."

http://www.youtube.com/watch?v=ll7rWiY5obI

- PK

STAND!

[FROM PETER]

Today was the first actual day of treatment, i.e., radiation.

Before going for my 4 PM appointment, I stopped in to see Bret and Janet Stolp at their home nearby. Both have worked at Duke Medical Center for years, Janet as a nurse and Bret as an anesthesiologist. Bret was totally responsible for getting in touch with Dr. D'Amico, the Chief of Thoracic Surgery, who quickly set up appointments and consults for me with radiation, oncology (chemo), and surgery personnel. Janet and Bret are upbeat, energetic, and solid friends.

Jessie accompanied me to the Radiation clinic. I was seen immediately and finished by 4:15. The procedure involves lying still and flat while large camera-type arms rotate over and around you. I didn't feel a thing, and have been told I won't really experience side-effects, e.g., sore, sensitive throat, until a few weeks from now. The schedule from here on out is 5 and 1/2 weeks, 5 days/week of radiation and 1 day/week of chemo over that period. The latter starts in two days. 

 

Though uneventful, today's beginning reinforced the seriousness of what's to come. One of the songs I most turn to for inspiration and energy is "Stand!" by Sly and the Family Stone, whom I saw in 1970. For those interested, the song is in the key of A. On the last chorus, instead of singing the word "stand" for the third time, the song ends in a funk jam with a D flat chord. Here's a live version:  http://www.youtube.com/watch?v=14yEO8nfqxE.

In his 1991book Anatomy Of An Illness, writer/editor Norman Cousins tells of how he worked with his doctor to use humor as an effective healing mechanism. By watching some of his favorite funny movies, particularly the Marx Brothers, he produced physiological, positive results that helped him to heal. 

Barney Fife and Otis Campbell (actors Don Knotts and Hal Smith) of The Andy Griffith Show are high on my list, e.g., in this scene where Barney tries to rehabilitate Otis: http://www.youtube.com/watch?v=sL9TunUh_bw. 

What movies or scenes would you choose?!

- Love to all- Peter K

GET READY TO LAUGH

    GET READY TO LAUGH

[BY SUSAN]

This long day at the hospital wasn’t particularly stressful, just long.  It began with an 8:30 a.m. scan up on Nuclear Medicine (aren’t we glad it is no longer nu-cu-lar?) where Peter ran into a fellow member of Schley Grange (Kim Greer) who works there.  While I waited for Peter down in the cafeteria I ran into our closest neighbor who was visiting a family member.  I know that Duke is only 12 miles away from here, but that’s still a small world—after all.

 
This morning’s scan (obviously something radioactive) was a renal one, another “just to be sure” test before the final radiation plan is enacted, and everything apparently looked fine.

Suddenly we were done and it was still the morning, and Peter said something I rarely hear come out of his mouth---“I need new clothes.”  After losing about 50 pounds his old wardrobe was saggy and baggy on him.  We had grabbed a few things for the Thanksgiving trip, and I think maybe he likes the way it feels to wear clothes that he isn’t swimming in.

So we drove to Northgate Mall, back to Macy’s, and a nice man named Fred assisted us in a typical Peter whirlwind shopping spree.  Peter has about 20 minutes and maybe 2-3 “try-ons” in him, and then he is done, simply DONE.  Fred shook his head and said, “Shopping takes me at least two hours.  I am pick-ee!”

Shirts were easy, since we’d figured out the right size last visit.  Pants required the try-ons, and after three pairs weren’t quite right I just grabbed something, figuring we could return it another day.  Turns out they fit perfectly, so Peter is now up to about 3 pairs of right-sized pants and maybe as many shirts.

As I said before, I lived for 3 years on the corner of Erwin and Trent, in Hanes House.  On my daily trek to the Div. School I often walked through the hospital (the old one), and also had an outdoor route that went right past the parking lot that Peter will use for his brief daily radiation visits (what a wonderful perk--to drive right up to the treatment place). 

 In those years at Duke, and all the times I’ve driven down Erwin Road since then, I never stopped to consider all that would be going on inside the hospital at any given time.  Births and deaths must take place daily, and simultaneously.  You only have to look around a waiting room or at passing faces to see some of the suffering and grief the place contains, and yet a closer look, just a bit of observation, will reveal great tenderness and listening ears will hear a level of gratitude that surpasses anything I’ve ever mustered.

This afternoon, down in radiation oncology (sub basement, white zone), I sat across from a mother and daughter (Jackie and Lyrica), both beautiful women.  Lyrica left to check her cell phone and I told Jackie how beautiful Lyrica was.  “She’s sweet, too,” was her reply.  “She’s 18 and still sweet.”  Jackie was there for a follow up after finishing her radiation for breast cancer back in September. 

She told Peter, when he asked, that she attributed her good health to God and to the good nutrition she’d provided for herself.  She showed Peter a tube of the cream she was sure had helped protect her skin from the burns…Udder Balm (we’re already fans).  Turns out Jackie was every bit as sweet as Lyrica.

While out for lunch I opened an email from my dear friend Ann Alexander.  Ann has been on her own journey down hospital halls with her husband, Lex, who is recovering from a stroke in he suffered in September.  Ann sent along the following talk from Dr. Marci Kramish Campbell, who died of gastro intestinal cancer just a few days ago.  Peter used to play music with Marci, and we know her husband Tom from our frequent visits to the Regulator Bookshop in Durham.  

Reading this made me wish I’d known Marci.  Our paths just crossed a couple of times in our long years of living in the same neck of the woods.  A UNC-CH professor since 1993, she worked in the field of cancer and nutrition, which I am becoming more and more interested in.  

Her speech addresses something that has bothered me since long before Peter’s diagnosis…and that is all of the battle and war language that we use with cancer.  I could not have stated my concerns as well as Marci did…and I am glad that she gave an insider’s perspective.  Jackie (above) echoed some of the same themes.  Yeah, you gotta have heart.

http://unclineberger.org/cancer-is-a-team-sport

And:  http://www.legacy.com/obituaries/newsobserver/obituary.aspx?n=marci-k-campbell&pid=155062667

Well, I didn’t intend this to be so long.  In many ways the day was uneventful, with long waits between the three scheduled visits, but short, almost non-existent waits for them.  Duke has been great that way so far.  I am learning, though, that long days are broken up in such a way that it is hard to get much work done…even though I tote my laptop around and try.

So, we got home with just enough light for Peter to go into the woods and split some logs, and I took off for a too-short run, but I’ve learned that trying to jog on our paths (with roots and rocks) in low light is just asking for an injury.  The walk back is mostly uphill, so that counts for something.

And then what else do we do to unwind?  I pick up a Sudoku puzzle and Peter watches music videos.  Then I go on Facebook, and call Peter over to come watch this video that daughter Jessie posted.  We’d seen a couple of these clips before, and I think the last one is best.  Can you guess which other one is our favorite?

Here, cheer up your own self after whatever kind of day you’ve had.  I bet that any of us who watch this will sleep better tonight!

http://www.buzzfeed.com/mentos/9-ridiculously-cute-videos-of-babies-laughing

Thanks again, ya’ll.  Keep the comments coming!  Remember that you won’t see them right away, and let us know if you have problems posting.