still doing well

Once again, I am very pleased - actually exuberant - to report that I am feeling quite well and living with virtually no pain or discomfort. While I don't have any high energy, exciting stories to tell right now, day-to-day life has been suiting me just fine. Happy to be here. Spring has sprung. The dogwoods, magnolias, forsythia, cherry and numerous other plentiful floral trees here in Pennsylvania are showing off. Tulips and daffodils too. Birds are in song. The full moon at 6:00 am this morning was huge and wonderous.

My blood panel this week did show a slightly higher CA19-9 blood tumor marker of 248. But my cancer doctor wasn't too alarmed. Last month it was 192. He pointed out that the number has been going up and down but not successively up. (see the chart in my last post). So he asked me to stay on my current oral chemo regimen of two weeks swallowing pills and one week of "rest". My current rest week ends today and tomorrow I'll start another 14 days. This will be my sixth round on the oral "chemo coaster".

I will have another CT scan May 20 to see if the mass has changed in any way. And the obligatory blood test as well. The doctor told me that if things start changing he wants me to go back on a new, stronger chemo cocktail of Gemzar and Abraxane. I think of the Xeloda pills I'm taking now as "Chemo Lite". The Gemzar, you may recall, really went after my bone marrow and destroyed/lowered the important platelet and white cell blood counts. Dr. Yee told me about a Partial Splenic Embolization procedure he would like to do to keep those counts up during "Chemo Heavy". I won't go into any detail about that procedure because we're not doing that and hopefully never will. Google it if you like.

IN OTHER NEWS: Highbrow and Lowbrow.

Highbrow: Barb and I enjoyed our trip to hear the Freeman Academy choir and other Mennonite school choirs at the annual MSC choir festival in Souderton, Pa on Sunday, April 14. The Singing Bobcats did us proud. Nice work. We heard them sing in their host Church - Indian Valley Faith Fellowship - Sunday morning. The guys sang one song. The girls sang another. And together they sang a couple more songs. Very nice acoustic so it was a pleasure to listen. 

We had dinner with our good friends Bonnie and Dave Moyer of Souderton. In the afternoon we went to Souderton High School for the festival program. Host school Christopher Dock does not have a theatre big enough to accommodate the 500-voice mass choir. It was a very diverse program with the choir from each of the 15 schools singing one number. The concert culminated with the mass choir which sounded better than any mass choir I have ever heard. 

We had nice visits with director Amy Vetch Hofer and chaperone Cindy Graber. Unfortunately we missed Pam Tieszen who was with a choir member that needed hospitalization after a soccer goal fell on the side of his face. During intermission I was totally surprised when Mory Ortman came up to greet me in the hall. He was visiting in Philly over the weekend and stopped in to hear the choirs as well. That was fun. It was a great day.

Lowbrow: I have added a new destination to my list of places I'd like to visit this summer. Last year, my friend, H.A. Penner, (who faced cancer of the prostate and is now "in the clear") and I took an enjoyable trip to Boston and watched the Red Sox play in Fenway Park. Well ... after reading about a new activity introduced this year at Coca-Cola Baseball Park in Allentown, PA (60 miles from Akron), we agreed we would both like to go see a Lehigh Valley IronPigs ball game. The new fan activity — a Urinal Gaming System — was featured in an article in the local Lancaster Intelligencer daily newspaper. It was also selected to be included in the "Sign of the Apocalypse" feature in Sport Illustrated magazine.

I have to admit that while learning that I have pancreatic cancer and thinking more about my mortality, I have occasionally thought .... "well, the world is going to hell anyway ... maybe this is a good time to 'get out of here' ". Yeah, I tend to interpret many things as signs of an upcoming apocalypse. Sometimes I get negative. Ask Barb. It's a bad trait and I do try to stay positive. I really do. I am confident the human race is resilient and will "pull through" this "medieval" high information/low knowledge, barbaric Dark Age we are now experiencing.

This new gaming technology certainly qualifies as a sign of the end times. Of all the inane minor league marketing gimmicks (including "Condom Night") this has to be one of the best "worst" ideas ever. Or, maybe, the worst "best" idea ever. Not sure. Regardless, it is very important that I experience this new entertainment attraction which Coca-Cola Park touts as being the first ball park to feature a Urinal Gaming System. Like this could actually catch on and become commonplace!!! God help us all!!!

The linked article says it's "hands free". How's THAT going to work??? Seriously. Why say hands free? I have to find out. I may want to bring a splash guard. I never was any good at video games and if stream pressure/power is important here, I will need a handicap. This also may give new meaning to the video game term "joystick controller".  I hope there is no "touch screen". I don't know. Inquiring minds want to know. The more Coke you drink, the more you play. Insidious, greedy corporate America will go to any length to sell more product.

So, sometime this summer H.A. and I hope to test our "ability and knowledge" at CCP in Allentown.

That's all for now. Thank you everyone for your encouraging emails, phone calls, cards and other shared comments. I am quite surprised and very happy to be where I am, considering the prognosis of the disease. Your support helps.

A friendly number

192.4 is a good number. Still high ...  but lower than 208.7. 192.4 is the result of my most recent CA19-9 blood antigen cancer test which I am happy to report is a downward trend (see chart and graph below). This means the cancer is likely stable; still local and not metastizing (probably not a word) ... uh ... spreading.

The numbers:

Graph of numbers:

I had the blood test last Monday and followup appointment with oncologist Dr. Yee last Wednesday. I was visited for the first time by a very nice PA last week. Her name is Angelique Scicchitano (she married an Italian). She was most polite and pleasant. 

Dr. Yee said if the number had gone up he was going to order a PET scan which gives a much clearer picture of the organs than the CT scan. But, because the number went down we are not doing a PET scan now. He asked me to continue taking the oral chemo, Xeloda, but lowered the amount from 1800 mg to 1500 mg (three 500 mg pills each morning and evening) due to my hand-foot syndrome problems. 

So I'm back to riding the chemo coaster and started a new "two-weeks on—one week off" cycle today. That said, I want to add that I left the doctor's office on Wednesday on a real high. A kind of euphoria came over me knowing that I can manage my situation and live a quality life a little longer. It was most welcome news. Maybe it was partially because the PA strongly recommended I do no more housework to help my hand problems. I did not get a written doctor's order to give up all housework, but plan to do so in the future so Barb will believe me.

To follow-up on my "Have tumor. Will travel." post which unfortunately was mis-intepreted by some readers to indicate the tumor was growing/moving/traveling inside me! No. It was meant to say that I can't leave it at home when I get in a car/van/airplane/train. Sorry, I should have been more clear about that. The tumor insists on coming with me and it's bags are always packed.

My tumor and I have done some recent traveling and are planning some future trips. Two weeks ago Barb and I made at trip to Philly and had a blast! We went to the Kimmel Center in Philadelphia to hear the Philadelphia Orchestra directed by guest conductor Delta David Gier (SD Symphony music director) play in Verizon Hall. It was an 11:30 am children's program about the element of "beat" in music showcasing percussion. DDG was fantastic in presenting the music, artists and engaging young people. He is exceptional. African drummers and gyil - an African xylophone - players, The program finale was Ravel's Bolero - not a masterpiece, but a sonic delight. An incredible sample of orchestra dynamics — starting very soft and ending with a full blast of sound. I tried to get DDG's signature after the concert but there was long line of parents and kids, so no such luck. We plan to go back and see something in the Perelman Theater and, I hope, a another Philadelphia Orchestra concert this fall.

Following the concert we took a free tour of the Kimmel Center. It is a real nice place. It is two theaters under one glass arch-dome roof. The theaters have remarkable design features.

This is our tour guide inside Verizon Hall, which — go figure — has no cell service! We use Verizon and Barb tried to send a photo/text of me to our sons and had to step out into the plaza. They not only engineered the hall to have no outside sounds like traffic, subway trains and another theatre next door as well as no cell service which use of would, of course, be most inappropriate in a concert hall during a performance. The hall is finished in mahogany and each seat has a conditioned air vent built into the seat pedestal. Naturally, the organ wasn't used during the "We've Got the Beat" concert.

The exterior of Verizon Hall is sheathed in Makore wood, which was new to me. It was used because it is resistant to the sun's ultra-violet rays. It's been there 11 or 12 years and looks great.

A handout given to some architect students that toured with us. You may need to enlarge to read (command + "+" on a Mac).

Following the tour, Barb and I walked toward a street known for its fabric stores. Barb was on a mission to buy fabric for the academic gown and cap she is sewing for our doctor-son to wear at graduation ceremonies at Fresno Pacific University and any future events requiring academic regalia. We stopped and ate BBQ at Percy Street Barbecue and it was very good. Fabric Row was a hoot. Barb found almost everything she needed at a crowded little store called Maxie's Daughter filled to the ceiling with fabric. We were helped by an Italian ethnic who was most helpful. Interesting store. Interesting people. Anyway, we had a great time on S. 4th Ave in Philly. I regret not taking any photos there. We probably walked about 2.5 miles as we kept our car parked near the Kimmel Center. I managed quite well. I had a slice of pecan pie ala mode on the way back at the same BBQ joint which was a nice kick in the ass - energy boost to get me back to the van. Barb enjoyed a dark California craft beer made w/oats, which name I have forgotten.

The tumor and I look forward to other travel plans, including:

• PA MCC Relief Sale in Harrisburg tomorrow (It's pretty big)
• Driving to see cherry blossoms/memorials in DC this Sunday (forecast to be at peak)
• Hear/see/visit Freeman Academy choir and accompanying grown-ups in Harleysville/Souderton on April 14
• going to Eian Schrag/Heather Smith wedding in Boise, Idaho in June and visiting Barb's brother Mike and family and cousin Flora Skillern nee Schrag and Bill.

Three recent "escapes" I've discovered, enjoy and recommend:

1. TV servies "Foyle's War" and "Call the Midwife"(Barb's find) - both BBC productions - streaming on Netflix

2. music by The Milk Carton Kids (enjoy the videos on this website) and 3. Richard's Thompson's latest CD: Electric

I didn't intend to expound. Thanks for bearing w/my over-the-top writing. And thanks for your support and referring me to the Great Physician (Bob Hartzler's term, I like). I have no idea where I would be without it.