A change in treatment

My second chemo infusion of Gemzar was last Friday. Today I am still feeling its effects with a headache that doesn't respond to pain killer and swelling and pain around my ankles. My blood test showed that Gemzar attacks my bone marrow a little too hard as my platelet and neurtophil (infant white blood cells) counts are too low to continue with Gemzer. In fact, Saturday, I made another trip to Hershey to get a shot to stimulate white cell development. My oncologist, Dr. Yee,  is proposing that I stop getting Gemzar and start taking a different chemo orally — capecitabine (brand name is Xeloda®) — in two weeks.

I plan to administer this chemo to myself, two pills a day, for fourteen days; then one week off. The pills will be sent to me in the mail after getting insurance approval (part of the reason of the two week wait before starting). It appears this chemo can have just as many side effects, only they're different!! While it is not as aggressive on my bone marrow and its function I could end up with hand-foot syndrome which is painful inflamed blistering red hands and feet! I hope I can dodge that one. Hair loss is more likely. But of course, diarrhea, nausea and vomiting are also near the top of the list of side effects. Arrggh!!. I am tired of trips to the bathroom.

Thanks again to everyone for your continuous thoughtfulness and prayers for Barb and me as we take this unexpected, unplanned journey.

On the normal side of life, (the lighter, fun side that I much prefer over the cancer side) this was a great weekend to feast on band music! Three colleges held college wind ensemble or symphonic band concerts in the area. I love listening to college band concerts so I had some ear candy. This was food for my spirit. Here was the schedule:

Friday night: Millersville University played at the Ware Center in Lancaster. Check.
Sunday afternoon: Elizabethtown College wind ensemble concert on campus in Elizabethtown. Check.
Sunday evening: Messiah College had a concert in Grantham. I didn't make it to this one. Too tired.

Taking a video with my iPhone is an insult to the band, videography and sound recording, but I did it anyway because I saw many young people in the audience doing it. Why? I don't know. I did it to show the Millersville Wind Ensemble in Steinman auditorium in the Ware Center. But I'm having technical difficulty uploading the video. I will try to get it here later.

This is the E'town College band in its overly purple Leffler Chapel.

Symphonic band music is very exciting to listen to live. Wind ensembles with all the percussion have a sonorous quality that is very dynamic. (No disrespect to string players here. Orchestras have the same dynamics.) And the repertoire of interesting modern band music is huge... and amazing. There is a lot of great band music out there.

I've also been listening to audiophile recordings of Jerry Junkin conducting the Dallas Wind Symphony playing Percy Grainger, Malcom Arnold and Ron Nelson pieces. What fun.

My interest in band music started when I was in grade school and we had a 10-inch LP record titled "Here Comes the Band". I played it over and over on our Magnavox phonograph record player. It had mostly marches and, as I recall, I fell in love with the majorette gracing the album cover as well.

I'd like to buy another vowel (doctor)...

     Yesterday (Friday) I had the first chemo infusion of my second round of chemo. I don't have a port installed so I get the juice via an IV. The treatment takes about one hour to complete. I'm getting the same juice as I had in Jan. and Feb. — Gemzar (or gemcitabine). However, this time I will not be getting any radiation so I should learn how much of my earlier nausea was a result of chemo or radiation. My sense is that radiation added significantly and am hoping for feeling less ill during the upcoming weeks.
     Today is Saturday and I worked all day at my dental billing job for eight hours and felt fine all day. Now, tonight, I started to feel a little woozy so I took a pill. It's too early in the treatment to draw any conclusions. I am scheduled to have chemo every Friday for three consecutive weeks and then have one week off and do that for three cycles (nine infusions over 12 weeks).
     This is called maintenance chemo and will hopefully continue keeping the cancer from turning aggressive and spreading.
     I want all my readers to get a better understanding of what chemo is all about. So here is a YouTube video that a good friend introduced me to that I found to be most entertaining, although it will definitely be best understood and appreciated by anyone who has had chemotherapy. The rest of you may find it just plain silly, but hopefully not objectionable.
     Also, please allow me to introduce you to my array of Asian doctors (and their ethnicity)
            Primary care physician: Dr. Peter Oh (Korean)
            Oncologist: Dr. Nelson Yee (Hong Kong)
            Ophthalmologist: Dr. Wenxin Wéi (Chinese), pronounced "we"

     "Oh Yee of little faith. Wei shall overcome cancer some day."

     I am not looking to add to my collection of physicians, but if I did, I would like another, but different, vowel. Maybe Dr. Yú??

Tumor appears to be "sleeping"

     Yesterday was a big day for us. We visited with Dr. Yee at Hershey Cancer Institute to learn the status of the cancerous mass on my pancreas. I had my CTscan and blood labs done on Wednesday. The pictures show the tumor is "stable" and has not grown any and there is no apparent metastasis. Hoooray! It does, however, remain encircled around the big main artery and vein connected to the intestines. So, it is still not resectable (can not be surgically removed). Bummer. (We were never given much hope it could be.)
     My pancreatic cancer blood marker was dramatically lower, which was also good news. It went from 1100+ in January to 100+ this week.
     My radiation therapy is finished, but more chemo is an option. The doc said I could hold off any more treatments and take CTscans every 90 days and then start chemo treatment when the cancer starts showing signs of advancing, or, I can start another round of chemo now as a maintenance treatment to hopefully keep the tumor in check.
     We opted to start another chemo regimen with the same drug, Gemzar, one intravenous infusion per week for three weeks and then one week off. This will continue for three cycles (12 weeks) if my side effects aren't too severe. If I get too sick I have the option of another drug, taken orally, that may have fewer side effects. Treatment starts next Friday. We will take a week off chemo for Adam and Annie's June 2 wedding.
     Having made about 40 trips to Hershey I decided it was time to visit the Hershey Chocolate Attractions. Barb and I went to Chocolate World and rode on cars pulled by a huge roller chain through a simulated factory. It was hard to understand the commentary over the loud singing cows (you need milk to make chocolate bars) and other "wow" simulated factory sounds. It was disappointing, but I enjoyed shopping in the gift shop and sampling some new candies. 
     We then took a shuttle over to Hershey Story - the new museum built in 2009. It cost us $9 each admission with our senior citizen discount but was well worth it. I watched a few films there that told me way more about chocolate making and history of Hershey the town and Milton Hershey the entrepreneur who helped make chocolate bars available to the masses. It was far more informative than the ground tram circling-panorama at Chocolate World which is designed to entertain more than educate. I highly recommend the museum to anyone visiting here.
     After the full day at Hershey we picked up some friends and enjoyed a meal at a Thai restaurant in Lancaster City. From there we went to fantastic jazz program at the Ware Center. The concert was the conclusion of a day-long Single Reed Symposium at Millersville University. Outstanding performances by Russell Peterson and entourage, including the Millersville Jazz Ensemble. Very tight group and a great acoustic hall. Barb and I had never been there and found this to be a wonderful introduction to the Ware Center which has something going on almost every day or night!!! And of course we needed to stop for ice cream after the program. It was a very full day. I think I was holding in my anxiety about the cancer "verdict" and Barb was more open about it. Both ways, with such a big day and good news we came home totally exhausted. I don't remember my head hitting the pillow.
     Thank you all for your continuing prayers, concerns, and words of encouragement. While I am not feeling 100% all the time, your intercession has helped deal with the real and right now the real isn't as bad as it could be.
     

Back home

     Yes, this blog is long overdue for a post. Please excuse me. But I've been away and didn't feel like typing into my cell phone!
     Yesterday (Tuesday, 4/3/12) we drove from Freeman, SD to Mall of America parking in Mpls, Minn., and took the light rail to the airport and flew back to Harrisburg, PA, arriving back in Akron at about 8 pm.
      We had a great trip west, visiting family and friends. Flew to Mpls, then, using our son Adam's car, drove to beautiful Cass Lake, Minn for three days, then back to Mpls. for about two days to help paint a basement in preparation for a home sale, and then to Freeman, SD, for five days.
      All the traveling went well. The weather was great. (It go up to 90° in Freeman). In northern Minnesota we were treated to a fabulous fish fry hosted by Barb's brother and sister-in-law, Rick and Arliss Baird. We also had a taco buffet and Red Solo Cup Pool Party at an indoor pool in Bemidji. Party, party, party. A great time was had by all. The ice fishing ended early this year. Cass Lake was ice-free 100 feet out from shore. We saw some really cool and unusual fog clouds over the lakes during our drive up.
     In Freeman we attended Schmeckfest (schmeck=taste; fest=festival), visited family and friends and celebrated my mother's 90th birthday Sunday noon and afternoon. Her birthday was Jan. 4, but we opted to come later in the year when the odds of fairer weather are higher.
     Below is a copy of the meal ticket stub which includes the menu. The meal, comprised of ethnic foods, is served family style to over 1000 each night for four nights over two weekends. During the day we attended historical presentations, saw cooking and craft demonstrations, heard a music concert and toured the fantastic Heritage Hall Museum. There is so much happening you can't see it all in one day. Each evening a musical is presented by the community. This year it was Wizard of Oz and it was superb.

Demonstrating sausage making. 11,000 lbs are made for the meals and for sale during Schmeckfest much of it smoked in a specially designed cold smoker (not in photo).

A large, clearly marked, walk-in cooler is used to store the popular wurst.

Schmeckfest offers the "best of the wurst".

 We filled a table for sixteen with the traditional checkerboard square tablecloth and real china plates, soup bowls and silverware waiting for guests to file in.

Tasty and cute - Zwiebach, a Low German staple, ready to be delivered to the meal by one of hundreds of generous volunteers.

Upon our return to Akron we were greeted by these lovely tulips which Barb planted last fall.
     I have been doing very well, thank you. Other than my ongoing annoying digestive tract issues, I felt fine the whole time we were gone. This "healing and recovery" phase has been most welcome. We were, however, very disappointed to hear a message on our phone answering machine that my CT scan had to be postponed one week because of an insurance approval glitch. I am really eager to find out what the status of my cancer is and now have to wait another week. Bummer. Now the CT scan is next Wednesday. Doctor's appointment next Friday, April 13, with discussion of next steps. I had hoped to have that discussion this Friday.
     It was exciting to see everybody we got to see on our trip. I think many people expected me to look worse than I look, so I was given many compliments about my appearance. That is great to hear and I hope people can keep saying that about me for a long, long time. Thanks, all, for your prayers and deeds.