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.