Lights... Camera... Snip, snip, snip

As mentioned in my last post, I had a procedure last Friday to look for clues to my ongoing digestive problems and resultant withering. Some of you may want to know the results. The immediate results of the surveillance of my "dark side" are inconclusive; with no outward signs of any problems. I have a nice looking colon. Nothing appeared abnormal. Looks great—cecum to rectum. They took nine tissue samples for biopsy. We were told results would be known in 2-3 weeks. So, stay tuned for the "rest of the story".

This was the third time of my 66 years that the last section of my plumbing has seen light. Each time has had it's own issues. This procedure went well from the medical point of view. No complications. But I was very uncomfortable for about 48 hours - from "prep" the evening before until waking up the morning the day after (Saturday). Thankfully, Barb was with me through it all and was my driver.

Let it be known, I am very weary of writing about these unpleasantries. This blog has far too many posts around "bathroom/toilet" topics. My fear is that some of you readers may think that I delight in writing of these unseemly topics and get a kick out of it. I can't tell you how I wish I could write about something about other parts of me—body and/or mind, something with some dignity, but the reality is that these topics are what my life has been centered around recently and are at the forefront of my thoughts and the purpose of this blog is to share that with you. I am anxious to write of more gentlemanly topics.

My next doctor appointment is this week Wednesday with my oncologist, Dr. Yee, in Hershey. I plan to have an in-depth heart-to-heart with him about what is happening to me. I continue to lose muscle mass, am short of breath and getting weaker. I'm sure it's because I'm low on fuel and water. We have not been pleased with the lack of effort to get moving on this. It's time for action. I don't want to keep wasting away.

Thanks again for your concerns and thoughts whether communicated or not communicated.

-Ricky

An unexpected and pleasant surprise

Every now and then some little surprise event comes along that really lifts one's spirits, really makes one's day. That happened to me last week at a most unexpected place. 

Last Friday — Good Friday — I had the day off by chance as I was scheduled to work on Saturday (I work one Saturday every month). I suggested to Barb that we go to the Green Dragon Market to shop for some produce, nuts and dried fruit. Barb was off Good Friday as well. MCC employees appreciate having Good Friday as a paid holiday.

I checked online and — unlike many Lancaster County businesses that are closed — learned Green Dragon Farmers Market and Auction would be open Good Friday and Black Friday from 9 am - 9 pm. Barb and I agreed to go by 9:30 to avoid large crowds and have better selection. Wow! Surprise! Little did we realize this is one of the two busiest days at Green Dragon. The other being Black Friday. We soon discovered the slogan: "the dragon comes alive every Friday as the rooster crows early morn." is a true statement.

We started to sense there was going to be a crowd when as we got within about a mile of the market traffic began to stop and go. Residents near the market avail themselves to the heavy traffic with yard sales. And they do grab the drivers' attention.

It's difficult to describe Green Dragon Farmers Market and Auction in words. To learn more, click here. I have included portions of the brochure for you to browse. It is located 4 miles from our house. 20 acres of free parking and hundreds of vendors, indoors - in ramshackle buildings cobbled together and in various stages of deterioration and outdoors booths. There is large small animal auction every Friday with oodles of rabbits, fancy chickens, geese, goats, calves, tropical birds. etc, that is fascinating to take in.

There is a local saying, "if you can't buy it at the Green Dragon, it chust ain't fer sale!"

 I have likened it to the Turner County Fair only much more concentrated and packed together. The food fare is similar to a fair with tons of junk food - actually much junkier food than the TC Fair. And people love to eat at Green Dragon because they don't offer kale, quinoa, whole grain breads, broccoli, brussel sprouts or any other trendy, elitist foods — just good old greasy comfort food. Let me just say, this is a very "earthy" market. 

As usual when at a such a place and with my digestion situations, I need to know where the "necessary room" is. There is a shortage of rest room facilities at Green Dragon. One mens room with three urinals and three stalls for the public!! So when I decided I should visit the washroom, to my chagrin, there was a line of about 12 men lined up outside waiting to go in — more typically the scene at a women's washroom. 

I queued to use the facilities and the line moved fairly quickly. As I neared the doorway I heard a voice inside clearly announcing to those in line, "stall", "urinal", when they became available. To my amazement a washroom attendant was helping move people through. What a nice service!! When "stall?" was called I was able to go ahead about five others and upon entering the little washroom heard music coming from a small portable stereo on a little table and candle burning to help neutralize the atmosphere. The attendant was busy dispensing paper towels and handing them to those washing up, keeping an eye on the stalls and urinals and thanking everyone for cooperation and tips (he had a tray placed between the two lavatories). He also made sure the stalls were clean before entering. He was really good at the job - pleasant, and was not in the way which is a trick in that little washroom. 

I suspect he asked the market officials for permission to do this. Regardless, it was something out of the ordinary for such a low-rent place. I can't recall the last time I was in a washroom with an attendant. I was a delight for me. And, yes, I left a tip. As did others. I think he came out okay.

This Friday I'm scheduled to have a colonoscopy in Hershey which was ordered by my oncologist to "see" what may be contributing to my ongoing severe diarrhea. I appreciate your prayers for conclusion so we know how to proceed. I feel good most of the time, but not great. And I am weakened significantly by the lack of nutrition. - Ricky

Managing the meds

As a young boy growing up on a farm in East Freeman, I spent countless hours in front of the family's Magnavox hi-fi in the living room. Note to younger readers: "hi-fi" is short for "high fidelity" and was a name given by audiophiles to the machines that reproduced sounds by converting the grooves on black vinyl discs into sound waves. Later "hi-fi" was partially hijacked by computerphiles when they started using the term "wi-fi" to define an area that has wireless internet — also known as a "hotspot" — a term that had a completely different meaning to guys in the 1960s and 70s!!!! Anyway the "fi" of wi-fi doesn't actually have any relevance but was used as a play on the word "hi-fi". The "wi" means "wireless". Wi-Fi is a Wireless Local Area Network, or WLAN, which doesn't roll off the tongue like Wi-Fi.

Anyway ... back to me in my pre-teens in the farmhouse with the Magnavox. It was great entertainment for me. I didn't realize how fortunate we were to have such a nice record player until Sunday company would comment on what a beautiful machine we had. Only then did I realize that it gave us a little status in the community to have such a high quality record player. It had a beautiful red mahogany cabinet and a 10 or 12-inch full range speaker. But only one speaker. Only one channel. This machine was monaural and the records I listened to were mono - not stereo, but the sound was great and enthralling. Oh, and it was a tube amplifier, which meant you had to wait after turning it on for the tubes to warm up before you could listen. That wouldn't go over very well today with everyone's need for quick functions and responses.

My older brother, Reed, and I were supposed to be using the Magnavox to improve our less-than-stellar reading skills by listening to special phonics records our parents spent good money on to help their young slow readers (sadly, reading wasn't the only thing Reed and I were slow at). Hammering phonics was the big push in the 1950s and was thought to solve reading and speech problems.

I don't think the phonics records helped me much — mostly because I spent most of my listening time on the plush wool carpet floor directly in front of the console with my ears near the speaker  listening to symphony and band music!!! ... not the phonics records.

Mom and dad had a wonderful collection of classical music. One set had a wide variety of classical "hits" — everything from Albèniz to Wagner. It believe they bought it along with the Book of Knowledge encyclopedia set or something like that. They also bought for us Prokofiev's "Peter and the Wolf" with Saint Saën's "The Carnival of the Animals" on Side B. We also had a set of Beethoven's complete symphonies conducted by Arturo Toscanini. I wore the grooves off those records and the phonograph needle as well. I also was given a band record titled "Here Comes the Band" and it was a double thrill for me — great band music AND a beautiful majorette wearing a short silky satiny skirt marching on the cover. I was excited — aurally and visually stimulated.

Truth be known, when no one was watching, I often stood up and pretended to be conducting the orchestra. It was exhilarating. It gave me such a sense of power and authority, along with artistic expression. It gave me energy and I gave it back to the imaginary orchestra. I knew I wasn't leading the orchestra. Eugene Ormandy or Arturo Toscanini were conducting, but I imagined myself in front of the orchestra as the leader, setting tempos, directing dynamics, cueing in sections, adding interpretation. It was great fun.

I think I may have had a lifelong hidden desire to conduct an orchestra. In recent weeks I discovered that dream may have come true as I "direct" the consumption of my medications:

• Not to be taken less than one hour before or three hours after other meds
• To be taken with food
• May cause drowsiness
• Will cause drowsiness - don't drive
• Do not use alcohol with this drug
• Four times a day, two pills three times a day, as needed

 .... you get the picture.

This is my little orchestra that I am currently conducting. We have a name: Ricky and the Pharmaceuticals.

This is a lot to manage and keep track of. I have to tell these meds when to come in and join the music. It's easy to forget to cue one in on time.  If one misses an entry it can throw everyone else off. This can be very demanding and is hard work - coordinating this ensemble of players.

In related news we celebrated my 66th birthday yesterday with a trip to Philly to dine out and then go to hear a concert by the Philadelphia Orchestra in Verizon Hall in the Kimmel Center. As I alluded earlier, I grew up listening to this orchestra's recordings on Columbia records when in its heyday in the 1950s and 60s. It was a nice warm evening and a wonderful outing. We ate at the Devon Seafood Grille.

The guest conductor was exciting and fun to watch. All three works were great. We sat near the back of the hall and the sound was unbelievable. It is the range of dynamics that just gave me goose bumps. Sorry, it can not be reproduced on an iPod or iPhone.

A composition by a lesser known Italian composer named Casella (written 1928) was with full orchestra and was most enjoyable. The Prokofiev Violin Concert No. 2 was flawless. We are curious if the young violinist with name "Ehnes" from Manitoba could have Mennonite roots?? Saint Saëns "Organ Symphony" was a huge hit and the sound in that hall is unbelievable. The audience went nuts. Barb said at one point she thought she heard the subway which the hall was designed to isolate. She soon realized the organist had his foot on a pedal to the far left of the organ pedalboard. I don't know the organ specs so I don't know if it was a 32 or 64-foot pipe. Either way it was more "felt" than "heard.

Even though I am not fully free of my digestive problems we decided to start two simultaneous chemo treatments on Wednesday, April 9. Abraxane by infusion and Xeloda orally. This means even more pills to try to remember to take! I've had these before and think I know what to expect. Hand-foot syndrome is the worst part. We are doing this to keep the blood tumor marker down - suppressing any wild ideas cancer cells may have about finding new landing areas. These treatments are two weeks on followed by one week of rest. Then repeat.

Thanks for your support and understanding. Thanks also for your happy birthday wishes on Facebook and other ways. As always I appreciate your comments and kind words. 

-Ricky

Alles schmeckt gut!!!

Directional signs are placed throughout the metropolis to guide visitors to the festival.

This way to Schmeckfest!!

I was very happy to visit family and many friends in South Dakota during Freeman's Schmeckfest celebration March 28 & 29.

Everything about the long weekend "tasted good". I had a great time seeing many old friends and visiting my 92-year old mother who is doing very well.

The flight to Sioux Falls Thursday, March 27, was delayed by eight hours by "impending weather" which was not in my plans but I made it safe and the flight home Monday, March 31, went very smoothly.

My dad, Orlando, seated, guiding the sausage into the casings circa '60s or 70s.
His recipe for smoked pork sausage is still used today. He died in 1987.
My aunt Linda is mixing the sausage and uncle Jake is cranking the sausage press.

Freeman has held its volunteer-powered celebration bringing together the people and cultures of three ethnic groups living around the little town for 56 consecutive years. Many citizens without a connection to the three groups —Low German, Hutterite and Schweitzer — also volunteer to present the meal, demonstrations, musical, lectures, and various activities.


Schmeckfest is a huge class and family reunion. It is a fund-raiser for Freeman Academy, a grade 1-12 private school in Freeman. I recommend it to everyone to go. Click here for tickets. You have to get tickets in advance to be assured a place at the table and in the auditorium for the musical.

I am taking a 2-week break from chemo to hopefully recover from the trots. So far not much progress. I keep thinking this will have to end soon. Thanks everyone for telling me you read about my journey, even though I had no clue you were following it! That makes it rather humbling and scary and questioning my writing. But you are kind and don't criticize my poor taste and use of syntax.

My older brother, Reed, seated, keeps the family tradition of making Schmeckfest sausage alive
as he guides the mixture into the casing at the 2014 Schmeckfest. Notice how we Schrags like the jobs that require us be sitting - not standing or running around!
11,280 lbs. of sausage were made this year. All but 30 lbs. sold. Most of it was smoked. and that's no baloney. This is truly the best of the "wurst". Secret to success: volunteers and garlic.

Mag Kuchen (poppyseed roll) is a favorite.
I believe combining the tincture of opium I was prescribed and taking
 to help slow down my digestive tract and then eating
poppyseed roll, I may have overdosed!!
It is true that this stuff will show up in a drug test.

Encountering potholes

The past 3-4 weeks I've been on a rough patch of road of the rather unpleasant kind — and I don't mean only Pennsylvania highways.

Just like this past winter has been hard on PA highways and byways with more potholes than I've seen in my five years here making for some very rough patches, forcing drivers to continually swerve - like going down a slalom course - dodging the deep damaging holes, I have been on a similar rough road - that is ... seeking out and sitting on "pot holes" of a different kind - if you get my drift.

Actually, you don't want to "get my drift". I've been seeking out new more effective air fresheners and candles. Barb and I even bought a small bottle of "Poo-Pourri", the latest technology in bathroom odor control with the greatest marketing video I've ever seen. I'll leave it at that, only to add the label on the bottle reads: "Silencer not included".

I've been taking chemo - Abraxane - which has diarrhea side effect - for some time. But not had such severe side effect before. I had an Abraxane infusion last week. But I can't seem to lick this malaise. I've been working with my oncologist to try and get things under control. I've lost 9 pounds over the past three weeks and do not recommend this weight loss method to anyone.

My blood tumor marker has come down from 232 to 169 which is supposed to be good news. I'm scheduled for chemo March 26 but will decline if I'm not feeling better by then. I am trying some new medications and diet to maybe help control things.

Yosemite National Park. Taken with an iPhone. Ansel Adams is turning over in his grave.

On the sunnier side of things Barb and I had a wonderful trip to California earlier this month. Barb and I stayed at Yosemite Bug Mountain Resort and Spa with fantastic sauna and stainless steel hot tub. It is 23 miles from the entrance to Yosemite Park. We enjoyed two nice day trips into the park. The weather was beautiful and there was some snow, but not enough to keep us from seeing what we wanted to see.

The ever-alert Owen at 5-1/2 months and Fuzzy Grandpa. He's not sure what to think of me.

From Yosemite we went to Fresno to visit some of the biggest lights of my life: little Owen and his mom and dad, Annie and Adam. What fun! To see how Owen has changed just since Christmas when we last saw him.

My next journey is back to Freeman, South Dakota during the second weekend of Schmeckfest. I look forward to visiting my mom, Verda, who's 92 and doing remarkably well, my brothers, Reed and John, and sisters-in-law, Susan and Sara, and son Charles and friend, Anna, are flying in from Seattle, too. And let's not forget the nephews and nieces. 

And there will be numerous other friends and neighbors to visit. Schmeckfest is a great gathering meeting, food, art, entertainment. I highly recommend it. I plan to fly to Sioux Falls Thursday, March 27 and return to PA on Monday, March 31. Wish me well and pray for no major travel events.

As always, I appreciate your emails, comments on the blog and calls. They really lift me up. And give me encouragement to keep on keeping on.

Ricky

90-day report is mostly good

After a CT scan of my lungs, gut and pelvis on Monday, today my cancer doctor said the cancer tumor on top of my pancreas appears to remain stable. While it's dimensions (width/length) changed slightly from the November scan the overall size is about the same. I have these scans of my innards taken with contrast dye every three months.

There was no sign of other tumors popping up elsewhere. Fine with me. While the ideal report would be "the tumor is gone" or "the tumor is now a shriveled relic", I am very pleased with the report that the cancer is still locally contained on top of the pancreas. The big artery and vein that pass right by the pancreas are still encased by the "ill-defined" mass which is 25.1mm x 35.6 mm (about 1 inch x 1.4 inches).

SOME BITTER PILLS TO SWALLOW

My blood test was a little less cheery news. My cancer tumor marker test has been escalating and, as I expected, Dr. Yee wants to take action. He said it indicates there is higher incidence of microscopic cancer cells traveling or lurking around in me that are looking for a place to park and start trouble. And we need kill 'em with higher doses of chemo. The CA19-9 marker went from 161 in January to 173 earlier this month to 192 on Monday, Feb. 17.

So ... in addition to my scheduled Abraxane infusion that I had today, I was handed a prescription for chemo pills — Xeloda — the same stuff I was taking orally last year. My new chemo regimen is:

TWO simultaneous 21-day cycles of Abraxane by infusion and Xeloda by mouth — two weeks on - one week off; Then repeat two weeks on - one week off — every 21 days. (I know most of you don't care about the drug names and schedules, but I include them for the benefit if any fellow cancer survivors that may be reading this)

Dr. Yee said this was an unconventional treatment, but based on my history should be effective. I am a little afraid of how I will handle the side effects. My hands and feet will need lots of lotion to fight the dreaded "hand-foot syndrome" and hopefully I won't get too fatigued. He recommended acupuncture to help deal with hand-foot syndrome, if needed. Insurance won't pay for that. I can look forward to taking more Imodium as well.

In a followup to my post about the dreadful winter, I failed to point out that when you have cancer the worries about weather are minuscule. Life is too short to fret over weather. I've got bigger fish to fry.

But the weather here has been warming and I want to share these pictures Barb took of the snow sliding like mini glaciers off the roofs of the Welcoming Place buildings at Mennonite Central Committee across the street from our house.

These over-hangers broke off today as we went up into the 40°s.

Barb has been watching these ice formations out her MCC office window which she faces from her new standing work station space. (It's no wonder she's always bringing work home! ... looking out the window all day)

This one reminds me of a surfer's frozen "tube" or "barrel" wave.

That's it for now. I must repeat that I am so very grateful for my support community at work, church, home, friends. family, doctors, nurses, infusionists,  (I don't think that's a word but you know who I mean). God bless you.
Ricky

Our winter of discontent

(apologies to John Steinbeck)

Barb and I have lived through yet another "storm" here in Lancaster County Pennsylvania. Two snow events yesterday left about 15 inches on top of the snow we had last week. I am pleased to report that our electricity service has been constant with only a one-second blip a few storms back. We haven't suffered too much .... except for listening to over-the-top TV weather broadcasters and listening to people exaggerate, whine and complain. We are fat and warm and the water runs and the plumbing works too. We have most all the creature comforts we could wish for.

With both our workplaces (Mennonite Central Committee and Smilebuilderz) closed, both of us enjoyed a "snow day" together on Thursday and are going back to work today. The forecast is for more snow Saturday. We enjoyed buttermilk waffles for breakfast and Barb broke out one of her thrift shop jigsaw puzzles.

While we have been spoiled by little snow the past few years (except for a big dump in Feb. 2010), this year is much different. Still we are not the "top 10" in terms of snow for the season. My guess is that if the present frequency and amounts keep up we will enter the "top 10".

I've probably mentioned before that until living on the East Coast, I hadn't realized how growing up and living in the Central Plains had made me such a hardy winter dweller. After living here five years I concede that I am weather "soft" and consider myself pretty much "sissified" by the much more temperate climate here.

But, that said, I still am amazed at how people here react to snowfall and "cold" (10°s and 20°s F). Or, the hate of impending snowfall. It weighs heavy. My co-workers of all ages were obsessed with the storm forecast and ever escalating snow depth rumors resulting from all the hype. I tried to tell them there was nothing we could do about what happens with the weather. Weather has been the dominant topic of conversation. I told them I hope the storm lives up to the hype so they aren't disappointed.

The snow yesterday, while copious, fell ever so softly and beautifully —like a picture out of Ideal magazine. Not a blizzard.

I must emphasize that with millions of people living here and the much more congested and tight living spaces and infrastructure these snowfalls are more critical. Also it's much hillier here and icey roads are much less drivable than in eastern SoDak.

I don't know how schools will make up all the cancellations. There is discussion of the state declaring some exception to the school year days requirement. The cost of the snow and cold is great in many ways all over the country this year including closed offices, lower production, lower paychecks, higher fuel bills. etc. Our PennDOT crews have been kept very busy. Going through many huge shedfuls of road deicer. In Lancaster city they have started hauling snow from the streets to business park parking lots for the first time this winter. Usually they let it melt in place.

So I have joined others here in grumbling about the weather. That's how it is. At least it gives me something else to complain about other than pancreatic cancer. Come to think of it, by far, it isn't the only thing I like to complain about. I also like to complain about NBC's coverage of the Olympics, Barack Obama, software programs and lots of other stuff.

One thing I DO NOT complain about is your following these scribblings and support in my fight to live. Next Monday I will have my 90-day [or tri-monthly, or quarterly — whichever term works for you] CT scan and meet with Dr. Yee on Wednesday with plans to start another cycle of chemo. I will post the scan results here next week. I have no reason to believe that anything has changed. But one never knows.

Happy Valentine's Day to everyone.