Monday, June 25, 2012

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



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

Tuesday, June 5, 2012

Been a while.

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.