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.

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

In Sickness and In Health

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: 

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!

[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

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. 

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.

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

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.

Listed by calories in descending order

A day in mid-May

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.

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.

"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:

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.

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.