Monday, December 10, 2012

Going over the "chemo cliff"

Dear Friends,

While it remains to be seen if those of us living in the US will, like lemmings, stampede over the "fiscal cliff", it is almost certain that I will leap off the "chemo cliff" on Jan. 2. (sorry about referencing that very tired phrase, but my use sounds better because of the alliteration. Right?). 

The pancreatic cancer marker antigen blood test (CA19-9) I had last week, indicates that the tumor on my pancreas may be starting to "wake up". The marker was 38 last month and 160 last week. Any number over 37 is considered high. It was 1800 before starting treatment last January. (I am still unclear what "scale" to use when considering these numbers — linear? logarithmic? Pain scale? Richter scale? Fish scale?)

Well ... where was I?? .. oh yes ... that news was kind of a wake up call for us and burst the "denial bubble", as Barb calls it, that we've been living in and really enjoying the past few pleasant, cruising along, "feeling great" months.

I still feel great. I just would rather that tumor marker number had stayed low and I could stay off chemo. At our visit with Dr. Yee Friday he strongly encouraged me to start chemo — XELODA (the pills) — again. Three cycles of three weeks each (take pills for two weeks and go off for one week) for a total of nine weeks.

We discussed our upcoming holiday travel and family time in South Dakota and California (Dec. 22—Jan. 1) and expressed our preference to not be "chemo-ized" during that time. Dr Yee understood fully and agreed to starting Jan. 2 - the day after we get back from CA with another blood test to make sure I am a suitable candidate as far as other requirements like white cells, platelets, etc. Meanwhile we are ordering the Xeloda....

Another metaphor: I will be jumping off the pleasant "merry-go-round" onto the dizzying, up and down "chemo coaster" (Barb's term) again. Or maybe the "tilt-a-whirl" describes it better, since the chemo tends to make me dizzy.

Fortunately, I guess???, my side effects from Xeloda are not as severe as they are for many... the worst being hand-foot syndrome which sounds — and looks — like no fun at all. I will deal with diarrhea (certainly don't want to be on airplanes, at airports, traveling in cars, and family with that), dizziness, sleeplessness, fatigue, and some swelling in my legs.

Also last week I made an appointment Dec. 19 with the Cancer Genetics Program at the Penn State Hershey Cancer Institute. It's a program to provide education, risk assessment and the option of genetic testing "when appropriate" for individuals who are concerned about a personal or family history of cancer.

I have a lengthy family history questionnaire to fill out and may be making inquiry of some family members re cancer history in the Schrag and Preheim families. I'll blog more later on this.

Thanks for your love and blessings to all.

Thursday, November 29, 2012

Giving thanks

Dear loyal readers,

Last week I observed my first "anniversary" of learning that I have a mass on my pancreas. I am still carrying it around today.

It was a day or two before Thanksgiving 2011 when I became fully aware of this unwelcome guest in our home. What irony! Thanksgiving? I remember how sobering and sad the news made me. It put me in a funk. I remember we had guests for Thanksgiving dinner but my mind was somewhere else and I don't even remember who our guests were.

Now, one year later, I was much better able to handle Thanksgiving. I have much to be thankful for. We had a wonderful dinner with John and Michelle Hillegass, their one-week old daughter, Greta, and visiting parents and grandpa Bill from Elkhart, IN, and Davidsville, PA. John is director of Mennonite Central Committee's portable meat canner and works in Barb's Donor Relations dept. at MCC. Michelle was on a MCC Learning Tour that Barb led to Ukraine in 2005. It was a traditional meal with our guests carrying in side dishes. Greta let us eat while she slept peacefully in her grandpa's arms at the table. Thank you Hillegasses and extended family for sharing the special day with us!

Another great Thanksgiving story this year started when I came home from work at 8:30 Wednesday evening to a very surprising and wonderful message on our phone answering machine. Barb and my financial advisor, Dave Weidman, left a message that he had four tickets to the Penn State/Wisconsin football game at State College on Saturday that he was unable to use due to family obligations AND THAT HE WANTED TO DONATE THEM TO US!! I was blown away. Nittany Lions vs. Badgers. Wow!! I knew of Dave's love of NCAA BCS football. His office is filled with football mementos and if you start talking to him about college football Barb will start to zone out completely and it is hard to get him back on track.

Anyway, earlier, during a visit to discuss finances I had mentioned to him that while not a rabid fanatic like him, I have wanted to experience a BIG college football game sometime (I don't have a certain team that I am loyal to) and before I knew it he starts painting word pictures of us at a tail gate/game in either Louisiana, Texas or Athens, GA, complete with the nuances of each game experience, since he has already been to games all over the country.

So 8:30 the eve before Thanksgiving I am frantically trying to think of who might be able to join me.  First off - none of my friends or acquaintances I could think of are football fans, much less graduates of Penn State. I made a few calls, but it was Thanksgiving weekend and people already had plans. I gave Barb a sales pitch on experiencing the "theatre" of a Big 10 game, that's it's much more than just football. Barb says she likes to watch people and I told her there would over 90,000 people there to watch! Bless her, she agreed to join me. Then we tried to fill the other seats. We felt we would be wasting the tickets — about 25 rows up on the 40-yard line. Did I mention the "package" included reserved parking sticker about 60 feet from Beaver Stadium? And, oh yes, it also included a seat cushion package and sure enough the four spots on the aluminum bench seat had a blue cushion across them. Very very nice.

On a lark we called another couple with whom we've enjoyed being on adventures not necessarily in our character and they were free and said would love to join us. Voila! 

The weather all week was glorious but was forecast to turn cold and windy with a high of 37°F on Saturday so we put on many layers and added considerable size to ourselves making the seating somewhat crowded. 

Me donning my new PSU cap and four tickets. This cap was the only piece of clothing that indicated we were Penn State fans. Thank you Bill in Elkhart for thinking of me and buying me a cap so we didn't look to conspicuous in our street clothes.
Notice the layered clothing. 


Our blue Toyota van and Beaver stadium. I told Dave it would have been nice to be a little closer!!

We walked through parking lot to an indoor stadium for 1 pm pre-game pep rally featuring the Blue Band (Penn State marching band). No pictures, but amazing and warm. Also some incredible baton twirling including a world champion man baton person who was crazy good throwing the baton 30 feet in the air, maybe higher. 


Nice seats.


The obligatory smartphone self-shoot of Barb and me while we still had some body heat.

We enjoyed a real precision half-time show.

Unfortunately the cold weather convinced us to bail at the end of the third quarter due to cold hands and feet and faces. It was the last game of the season and Penn State won 24-21 in overtime!! Drats. We missed it. I tried to listen on the radio but the station faded about 20 miles out of State College. So we missed the incredible ending to the game and season. With all the troubling news about the football program here this past year, it has been an important year for the program to get back on its feet. They had a winning season with a new coach and players that had an opportunity to seek healthier established teams but decided to stay.

Here are some of my impressions/highlights of the day:

•Attendance was 93,505. What an amazing feat to coordinate an event with that many people coming to town. Acres and acres of vehicles.

•The athleticism of the players (TV does not convey the speed and agility), marching, baton twirlers and mascot (in mountain lion costume). The players seem to be much more normally fit than many pro players. The musicians made some crazy backward marching while turning moves.

•We sat in and participated in what was billed as the world's largest stunt card event. Twice during the day we held up large white or blue sheets of paper that were taped to our seat. It was senior day and when I looked at the stadium TV I saw we spelled: "Thank you seniors".
Look for us somewhere in the 'O' of 'SENIORS'. Barb had a blue card and the rest of us had white cards.

I had heard about some impressive crowd "waves" in the past including very slow motion, but that didn't happen Saturday.

I became more fully aware of the intense fan base and how damaging the Sandusky scandal was to the program. For many this is "church". The lion mascot stood in the middle of the field and with huge gestures was able to coax each side of the stadium to "roar" like a lion, starting low and quiet and ending loud. He had such power! Pretty amazing.

We made quick stop in Belleville on the way up to connect with Betty Hartzler at the Mennonite Heritage Center and pick up a night stand table Barb had bought at the MCC Peach Cobbler Relief Sale in Georgia and Betty hauled back to PA.

All in all, a most memorable experience. Thanks Dave for thinking of me and for your generosity. I feel like a "make-a-wish" kid. This was kind of a far-fetched dream of mine that became very real. And I enjoyed dealing with this real. Hmmm ... what else should I wish for. 

PS: By the way, I still feel great and keep praying that the cancer is not deciding to start getting active or packing its nasty bags and start traveling. Cheers.



Saturday, November 17, 2012

A new side show

Hi readers,

I had a CT scan (pelvic, abdomen, chest) on Wednesday afternoon and that evening at 8:30 pm, I got a call at home from my oncologist, Dr. Nelson Yee. When he introduced himself on the phone I suddenly became very fearful that he was calling me with some terrible cancer news. He started asking me if I had any pains in my chest or difficulty breathing. I said "No. why?" He said the imaging shows a blood clot in my right lung and he was very anxious to get me started on Lovenox® - the blood thinning shots I was giving myself for about two weeks several months ago when some clots showed up behind my right knee. Since the leg clot was chronic and not acute, he said I could stop injecting myself.

I told him I still had about 15 syringes left from that last prescription and could start giving myself a daily shot right away. Yee said the mass on my pancreas is unchanged in size and form from the last two CTscans. While the blood clot was disconcerting, I was relieved to hear that good news. He was pleased that I could start Lovenox® (another pork product -- made from intestinal mucosa of pigs) immediately and said we would talk more at our appointment Friday (yesterday).

Lovenox® is basically heparin and acts as an anti-coagulant. I remember my brother Mark giving himself shots during his clinical trial period when he was fighting pancreatic cancer. He ended having a stroke (or two) that was debilitating. I really rather not have that happen to me, so I am concerned. Turns out blood clotting is common among pancreatic cancer patients, Dr. Yee said. The tendency to clotting is a result of a severe enzyme imbalance due to the pancreas not functioning properly.

Dr. Yee didn't have the blood tumor maker test results Wednesday night but we learned at the office visit Friday that it went up slightly - from 36 three months ago to 38.6. He said 37 is "normal". The number was as high as 1100 and 1400 in January and February, so this appears to be relatively "safe" number. He said there are other factors that can make the cancer blood test jump around a little and didn't seem too concerned -- just that we need to have another blood test in December to track it. 

So, overall, reasonably good news. Dr. Yee showed me the CT scan "slices" of my chest (looks like ham slices) and abdomen and I have to say, I'm glad I don't have to read them!! The image doesn't seem that conclusive about anything to me. The white blotch that he said was the blood clot didn't look much different than other stuff on the image which he said were blood vessels and other lung parts???? I trust him though and will dutifully inject myself with hog intestine mucous membrane juice. It just may put a little curl in my tail!

This evening I convinced Barb to go see the new James Bond movie "Skyfall" with me at the local IMAX theatre. Neither of us have ever seen (or "heard") a movie in IMAX format and, based on high praise on Metacritic and from Roger Ebert, I thought this would be good one to see on the REALLY BIG screen. A bit of escapism for me, perhaps. We were both quite disappointed in the movie but very impressed with IMAX. The movie is very well crafted and the first hour or so was entertaining — good acting, great locations, artistic. The music was very good, including old Bond tunes. But the plot is sorely lacking. It is very thin and somewhat predictable, especially the "showdown". The second half of the movie was just not going anywhere and while I enjoyed the Scottish highlands setting and old buildings, the explosions and such were just stupid and violent. Yes, I am old. But so is Roger Ebert??? For a much better espionage/thriller movie I recommend "Farewell" (2010) streaming or DVD. 

That's the latest from Akron. Adieu.







Sunday, November 11, 2012

How long d'ya got?

Hi y'all!! To the best of my knowledge I still have pancreatic cancer, so I better keep bloggin'.

My personal experience has been that I've always had great trouble approaching and talking to people with health issues, like myself, to ask about their condition... to express my interest and concern for their wellness. Oh ... what to say?

Now that I have cancer, I am more keenly aware of how people articulate their regard, support and encouragement. "You're lookin' good" is a favorite I often hear said to me and also to other people battling cancer or other health problems. And I like hearing that. But the irony of that comment is that no one ever told me that I looked good when I didn't have cancer. I don't think I look better now than when cancer-free. Barb often heard the same comment when she dealt with breast cancer three times. It's become an inside joke between several cancer survivors/cancer fighters we know. "Well, you're sure looking good", we tell each other emphatically. I repeat: I don't mind being told I look good. No one has offended me with any comments. I want to be as transparent and open as possible about my situation.

A few months ago a friend from Pilgrims Mennonite church were we attend, asked me a question most people, including myself, usually don't ask: "How long d'ya got?" he asked boldly. He wanted to know when my train will be stopping at the station. I hadn't heard that direct an inquiry before. It was kinda' refreshing in a way. "What'd your doctor tell you?" he added. I paused and tried to recall doctor conversations, but was unable to give an answer. "I don't think he ever really said," I replied. "I'll ask him at my next appointment."

The smart aleck response would have been to ask the question back - since none of us knows "how long we've got." But I took that question at it's face value and think it's a reasonable question to ask someone with cancer. Not everyone could ask this question though. This fellow Pilgrim has a very winsome personality. He's very friendly and unassuming. He has a twinkle in his eye that helps make this kind of question okay.

Well ... at my next appointment with my oncologist, Dr. Yee, I told him how I'm being asked how long I can expect to live and asked him what he thinks about my ETD (estimated time of departure). "Tell them I have no idea," he quickly responded.  Good answer, doc.

There are, of course, statistics on pancreatic cancer patients that are very sobering. But they are all about percentages and odds. For example, Wikipedia says: "pancreatic cancer has a poor prognosis: for all stages combined, the 1- and 5-year relative survival rates are 25% and 6%, respectively; for local disease the 5-year survival is approximately 20% while the median survival for locally advanced and for metastatic disease, which collectively represent over 80% of individuals, is about 10 and 6 months respectively." I seem to still be in the "local disease" stage. At least I am hoping for that.

The Journal of Clinical Oncology says: Pancreatic cancer, one of the most common gastrointestinal tumors, has a 5-year survival of less than 5%. Despite representing only 2% to 3% of the total cancer incidence, it is the fourth leading cause of cancer death in the United States. 

In one week I will be observing my first anniversary of diagnosis. I am really enjoying not taking chemo. I feel great and am starting to think that I may beat those gloomy statistics. I think it's absolutely amazing how good I feel. I don't want to become over confident, but I know I still have some good time left. I really should add some more things to my "bucket list". At first I was keeping it short so it would be manageable and doable. I am so looking forward to being with family over Christmas in Freeman and then Fresno and then on the Pacific Ocean near Santa Cruz, CA for a few days. I can hardly contain myself and its looking like I will last at least that long!!

This week I will be having a CT scan in Hershey on Wednesday and followup oncology appointment on Friday to learn the results of the scan. Hopefully the tumor is remaining inactive and there is no cancer popping up elsewhere. I will report on this blog what I learn and what treatment, if any, the doctor recommends.

So ... contractionally speaking and in an apostrophorical sense ... I dunno' how long I've got. But I want to thank you for your support which helps keep me from being told "it's only a matter of days" ... even though it just may be only a matter of days. 


Tuesday, October 30, 2012

We're well, dry and safe

Hi all. I know this big East Coast storm called Sandy — now a post-tropical depression — made big national news and I want to let you know that in Lancaster County we definitely dodged the worst part of the storm.

We feel very fortunate to not have had very severe weather here. While Sandy didn't live up the hype here, it sure did elsewhere, especially in New Jersey which took the brunt of the storm and New York City which experienced very high surges and flooding.

We've had 3.25" rain from Sunday until now (Tues. morn). There where some significant wind gusts but nothing very sustained. We have some branches down and lots of leaves but I don't see any trees down in our neighborhood. Bottom line: This storm wasn't nearly as problematic for us as hurricane Irene which hammered us with 6+" rain in August 2011. Then we had water in the basement and had to pull out a carpet to dry. I also lost an element from my TV antenna when a trip branch was blown so hard it whipped over the house and snagged the antenna. Ironically, for us, Irene which had much less hype caused more flooding and damage locally than Sandy, which emptied store shelves of bread, water, candles, batteries, flashlights, generators, etc.

We haven't had any electrical outages thus far, although the lights where dimming intermittently last night when I went to bed which made me think there still could be a power failure.

The "eye" of the storm fka Hurricane Sandy passed by us (about 30+/- miles south of Akron) around midnight last night. Today it is brisk and cool with a continuing light drizzle and winds out of the south at 8 mph.

The MCC office was closed yesterday but is open today and Barb is back to work. My workplace, Smilebuilderz, closed at noon yesterday and announced it will be closed today as are many schools, libraries, etc. I am trying to find out if I could go in this afternoon and work for a few hours, but no response yet.

A young woman, named Boyanna, living in our upstairs apartment is from Serbia and she was extremely frightened by the storm scenarios portrayed on the telly and internet. She told us Europe doesn't get these kinds of storms and she lived there during the Yugoslav Wars and she said she wasn't as terrified by the threat of bombings as by this pending storm!! Ahh, the power of "First Warning", "Storm Team", "Stormtracker", etc. continuous TV broadcasts. We tried to console her that we are inland about 125 miles from the coast and the storm should be weakened significantly by the time it reaches us. We also offered she could hunker down in our end of the basement if it would help her feel safer.

We feel lucky to be well, dry and safe.




Sunday, October 28, 2012

Checking in, checking up, but not checking out

It's time to dust off the old blog and check in with the faithful followers.

I've been feeling very, very well, thank you — almost to the point of denial that I have cancer. But not quite. I am reminded by my digestive system several times a day that my pancreas is not up to snuff. My pancreas: "The old girl. She just ain't what she used to be". Oops. Sorry for the female gender attribution to the pancreas. My growing up in East Freeman has permanently etched associating gender to things. In East Freeman tractors and farm machinery that didn't work well (ie Old Grey Mare) were often characterized as "she". That, of course, has changed and is no longer the case in our modern era. It was a slip of my fingers on the keyboard. Because the cancer tumor on top of and grown into my pancreas appears lethargic and not motivated, I will henceforth refer to my pancreas as a "he". 

At my last check up with my oncologist in early Sept. I was given the option to continue with oral chemo pills or lay off the chemo. The doc seemed to hint that I should maybe continue the chemo because my side effects were minimal. I reminded him that while they could have been worse, I had my share of side effects: sleeplessness, diarrhea, headaches, dizziness, fatigue.

He said there is no right or wrong answer about whether to take or not take chemo. He said he would do monthly blood tests for the pancreatic tumor marker CA19-9 which measures cancer antigens until we take another picture of the pancreas in mid-November. My CA19-9 level was very high after detection and then was remaining very low after radiation and chemo so Dr. Yee said with a low level it should be fairly reliable, but not definitive, indicator of cancer activity. I opted to go chemo free and don't regret it one bit. I had a blood test last week, but don't know the results. Like my absence of blog postings, hopefully no news is good news.

My life has been just grand this summer and fall. (other than that kidney stone episode)
• I am taking only two pills: CREON (enzymes) to aid digestion and vitamin D supplement.
• I am working full time.
• My weight loss has stopped and I am maintaining about 173 lbs.
• I can eat any food I want. Yippeee!!
• My energy level is a little higher since I'm off the chemo and kidney stone drugs

Last week my brother John and wife, Sara, from Santa Fe, NM visited here for five days. We took a trip to Virginia where I checked off some bucket list items: the amazing Luray Caverns, beautiful Skyline Drive, Shenandoah Valley and the humungous Smithsonian Air and Space Museum just south of Dulles Int'l Airport outside Washington, DC. They were all excellent. The fall colors were great. The weather was great. 

Brother John, sister-in-law Sara, frau Barb and I sitting on one of the numerous overlook walls in Shenandoah National Park.

The rock formations in Luray Caverns are unprecedented.

The "professor" and Discovery space shuttle. One retired and one just plain tired.

The Concorde was so long I couldn't get it all in my camera view. Notice the tiny windows. Also saw the Enola Gay, the strange all-black Lockheed SR-71 Blackbird Cold War reconnaissance jet and many other fantastic planes, satellites, orbiters, etc. The "other" older Smithsonian Air and Space Museum on the mall in DC will fit inside this building - the entire building - bricks, mortar, roof and all!! This is a very nice museum.


A few weeks ago Barb and I helped host a 60th birthday party for our friend Jim King. I made the BBQ baby back ribs and Barb made an awesome six-layer chocolate cake.


This is the first time I've barbecued four baby back ribs (each cut in half) using a rib rack and a layered configuration. It worked quite well.

I bought the ribs at Walmart and when I opened the package I noticed they were processed by Cargill Inc. Barb used chocolate we bought at Wilbur Chocolate in Lititz, just a few miles from here. Cargill also owns Wilbur Chocolate. So Cargill had a hand in both the meat and the dessert!! Not necessarily a favorable review for those who are suspicious of, or, outright hate huge ag businesses. And there seem to be a fair number of such people in PA. 

Birthday man Jim King with the chocolate cake with fewer than 60 candles (to avoid a fire) in front of him. I should have taken some closeups to show the craftswomanship in the cake building.

On Halloween our son, Charles, from Seattle, WA, plans to fly into Philly to visit us for a week and we look forward to that. I hope the crappy weather is past us by then.

Right now we are being bombarded with weather hype and told to be proactive in preparation for hurricane Sandy when she hits PA on Tuesday. Barb spent much of the afternoon getting our basement ready for possible infiltration. We had water come in when hurricane Irene dumped on us last year. We are to expect between 4-6 inches of rain and 30-40 mph winds. There has been a run on bottled water, flashlights, candles, groceries at all the stores. I went to buy groceries on Saturday and Oregon Dairy parking lot was the fullest I've ever seen it. Many schools have cancelled for Monday and will likely do the same on Tuesday. Also, some government workers have been told to stay home. My biggest fear is likely power outages. I love electricity and would miss it very much.

I must go watch game #4 of the World Series. The Tigers are sputtering badly but just took the lead for the first time in the series.

More later and thanks for your concern for my well-being. I didn't expect to be doing as well as I am at this point and give credit to the Creator/you for that.


Sunday, September 9, 2012

To what "ex-stent" will this blogger write about a kidney stone experience?

I'm sure many of you are bored and perhaps irritated and maybe even offended by my personal "blow-by-blows" of my kidney stone experience. Please indulge me one last post on this subject.

This blog post contains some explicit and graphic language and images. Reader's discretion is advised.

Last Thursday I went to the Hershey outpatient surgery center to have the stent removed that was placed in my right ureter last week Friday after my kidney stone was removed. The stent was placed to allow the ureter to heal properly after the trauma of an irritating stone in it. The procedure went very well. It was a piece of cake. I went into the surgery building at 11 am and walked out at 12:30 pm and went back to work! Of course, I didn't sleep well the night before --- filled with anxiety about having a tool-laden probe pushed up my penis and into the bladder while I am alert!! Yikes.

When they wheeled me into the operating room, there where four men there: a male RN, the resident and two assistants/techs. (My urologist, a very nice, pleasant woman, had not entered the room yet.) One of the assistants asked me my name and date of birth. I answered and he then asked me what I was to have done. "Why are you here?" he asked. In my own way of coping with my uneasiness about what was about to take place, decided to add some levity and replied: "I am supposed to have my penis enlarged," (thinking I may be able dupe them into doing a procedure that would be of some gain to me.???) Alas, the witty tech snapped back: "it shows here you are scheduled for a penis removal." That remark gave me pause, until we laughed - me, nervously. After agreeing that I was there for a stent removal the urologist came into the room and I decided to change the direction of discussion.

The procedure to remove the stent is called a flexible cystoscopy. The cystoscope, which includes a nice little light, TV camera and tiny clamp, is inserted through the urethra (urinary tract) into the bladder where the doctor looks around and grabs string attached to the stent.

Unlike my first two cystoscopies where I had general anesthesia, yesterday I had a local anesthesia, lidocaine, to help reduce the "discomfort" of a probe going up the penis, through the piss valve, past the prostate and into the bladder. I watched the video screen along with the doctor as the light, camera and clip journeyed along its merry way and as he spent about a minute - which seemed like five minutes - moving it about in the bladder to find the string at the end of the stent.

For some reason I tend to get chatty when I am about to have a procedure. I don't know why. But, as the urologist supervised the resident who was twirling around the scope searching for the string, I as yapping away. I made some comment about how tricky it is to find the string. At the same time, I was experiencing  "mild" discomfort - akin to getting kicked in the testicles. I commented to the team that at least with patients under general anesthesia they don't have to listen to a their patter and critique. They agreed with me that was a benefit of general anesthesia. Dahh!

Here is an x-ray (not mine) showing a uretal stent -- kidney to bladder -- in place:

I was in recovery for 15 minutes. Got dressed and left. Went back to work. I learned lab results showed my stone was NOT a uric acid stone, as one urologist had guessed before it was extracted, but calcium oxalate, the most common type of stone. So I guess I can't blame chemo for this bout. I was told to drink plenty of fluids and limit my salt intake to help reduce risk of any more stones developing.

At the end of the procedure I was asked if I wanted a souvenir. At first I declined, but, curious about what I was carrying around with me for the week, quickly changed my mind and said "yes".

Here it is .... in living color ...
The curled up part at the top was placed in my kidney and loop with string at the bottom was in the bladder. The loops keep the stent in place. I never realized that urine made such a long trip from kidney to bladder. I was also impressed with how skinny the tube and, likewise, the ureter, are. No wonder a small stone causes problems.


Note the perforations in the walls of tube allowing the urine to infiltrate the tube in the kidney.





The "bladder end" of the stent with the retrieval string.

With that I will close the book on this chapter of my journey. As I wrote earlier, I know many of my readers do not share my fascination with these details. To my surprise, I did have a co-worker tell me this week that she especially liked that wrote about my treatments' specifics. So, if no one else appreciates this, I know of one reader that does.

I'm not sure why these anatomical minutia fascinate me. But, hey, I got to see the inside of my bladder!! Most of you haven't had that opportunity. I've been carrying around that bladder for 64+ years and never saw it's insides before last Thursday.

I have always been in such awe of all the organs, glands, muscles, bones, vessels so neatly packed in my "trunk". And I never get to see them ... and where are they exactly? ... and what do they do? And all of us carry all this stuff around with us everywhere we go. Every minute of our lives. And all of that stuff has work to do and does it well and efficiently ... most of the time. But when just one little part stops working, like my pancreas with a big honking tumor on it, you know something's wrong. But we really are not very good at reading our body's signals, like pain. When you deal with one of the body signals you learn quickly where that body part is and what it does and what is troubling it. 

Like many of you readers, I at least had the benefit of watching chickens, pigs, pheasants, deer, fish, etc being butchered on the farm or field or lake. Hog butchering was especially interesting because they seemed to me to be the most like us --- guts-wise, that is. So although those of us with butchering experiences have an advantage over many who have never seen the inside of a hog, there seems to be never-ending amount of stuff to learn about our bodies.

I recall a wonderful 13-part television series that aired on PBS in the late 1970s called "The Body in Question"which piqued my interest in these matters. It was produced by BBC and presented and written by Dr. Jonathan Miller. I loved that show. He was an outstanding presenter. Perhaps some of you remember it. It is a highly entertaining series in which Miller considers the functioning of the body as a subject of private experience. He explores our attitudes towards our bodies, our astonishing ignorance of them, and our inability to read our body's signals. In the first episode he does "man on the street" interviews asking people where they thought certain organs were located and it was much more entertaining than Jay Leno. I wish I could watch it again but am unable to find it on Netflix or anywhere else. I hope it isn't lost forever.

Enough already. I release you from this.

Watch for another post soon about my oncology appointment on Friday.




Friday, August 31, 2012

Great Day!!!

Yaahoooo! Kidney stone extraction successful! Feeling great.

(Disclaimer: I think I am still feeling the effects of sedation. I am not to make any important decisions or sign any papers less than 24 hours after waking up. Therefore, this blog is at risk for some off-center thinking/writing.)

We left for Hershey medical center at 5:45 am this morning after Barb downed two cups of coffee. I was not to have anything to eat or drink after midnight so no sugar or caffeine jump start for me. 

We did a fair amount of waiting around, but nothing serious. I went into surgery around 9:30 and woke up at 11:30 am WITHOUT A KIDNEY STONE, CATHETER AND PEE BAG. The procedures I had were: cystoscopy, right ureteroscopy, basket stone extraction and stent placement.

Translation: going through my urethra they grabbed the whole stone (with a basket??) and pulled it out in one piece. No Star Wars laser beams were needed or sonic blasts to break the stone. They were prepared to use a laser, if needed. The stone was sent to a lab to determine type. I won't know the results until I go back next week to have a ureter stent removed. The stent was placed to allow the inflamed ureter to heal without any possible adhesions which could block the flow of urine from the kidney. Don't want that. So, one more trip to Hershey for stent removal. We plan to coordinate that with my oncology visit next Friday during which I will have some blood tests done and discuss future treatments for the pancreatic cancer.

After post op recovery and getting on my feet we headed home at 4:30 pm and I was starving. Had a crazy urge to have a crab cake so we stopped at Martin's Country Market on the way home and bought one (Barb didn't share my compulsion). I had a great supper w/fresh tomato, sweet corn, crab cake, spaghetti.

Last evening we had a delightful "ice tea, pears, crackers and cheese time" with Norman and Darlene Hofer of Freeman, SD. It's always fun to catch up on the haps in SD.

Thanks everyone for your support and prayers today ... and earlier ... and upcoming. You help keep me dealing with the real.



Sunday, August 26, 2012

One week down ... one to go

I am just past the middle of a two-week misery. It's been a very real "deal-with-the real" deal! I am looking forward to relief this Friday when all my plumbing accessories and personal 5 mm kidney stone ("Ricky's Rock") are scheduled to be removed.

This has been a far more wretched experience thus far than I ever imagined. I would have to say the most miserable week of my life. Oh, true, it's not as uncomfortable as a kidney stone blocking the ureter! I'm grateful for that. But it was only yesterday that I stopped taking the tylenol w/opiods and other drugs to help relieve my suffering. And those drugs have some very nasty side effects — dry mouth, drowsy, wooziness, altered mental state, etc. I still have considerable unpleasant "discomfort", but am managing. After today, I think I may start taking the pain killers again.

I have learned more about human anatomy than I ever wanted to know. Bottom line is this: a man's tallywacker was not designed or intended to have a 1/4" rubber hose threaded through it! And a man's bladder is not intended or built to have a stent, hose and balloon in it ... all at the same time!!!

SUMMER IN LANCASTER COUNTY

Now for some lighter fare, I want to share some of the great experiences of the summer before the stone.

My first cousin Duke (Don Jr.) and Kay Harkcom from Hudson, WI, visited over the July 4 weekend.
We had a great time cooking and eating gourmet meals at home and played board games.

My brother Reed and Susan Schrag drove out to see us the first week of August. We had fun taking in much of Lancaster County. When at the Green Dragon market in Ephrata, Reed and I saw a pig stomach for sale at the New Holland Meat booth already stuffed w/potatoes, onion and sausage. And only $2.99/lb. My brother, Reed, is a master at preparing "sow magen" using our family sausage recipe. He has prepared dozens of them over the years. They require some work. We consider them a gourmet food. They are prepared for holiday meals and special occasions. Anyway, an impulse purchase was made and we took home a Lancaster County "Dutch goose", as it is also called here. The "Dutch goose" name's origin is supposedly when Amish families could not afford a real goose for Thanksgiving they would prepare a stuffed pig stomach instead. I roasted it on my Green Egg cooker/smoker. No, it didn't match up to the ones Reed prepares, but was fun.

 Sow magen ready for the Big Green Egg.


I started to cut the net. It did not burst from roasting. I forgot to take a pic of the sliced "goose".


We also went to the Leola produce auction. It was very interesting observing buyers of large quantities of produce.
 Muskmelon (here more affectionately called cantaloupes) at the Leola Produce Auction.

 Buyers (and tourists) sampled the melons.

 Produce delivered to the auction by horse or steel-wheeled tractor,
depending on your denominational niche.

Presentation is important.

Ready to do some canning?

Susan and brother Reed on the front steps of Mascot Roller Mills, a water-powered grain mill. We also toured the Ressler home. A fascinating historic place in Lancaster County.



In mid-August we enjoyed a visit by Barb's sister Becky and husband, Steve Hagenah, who drove from their home in Bemidji, MN to PA just to see us.

We went to NYC over a weekend. Stayed one night in a 4-star hotel on Time Square. Parked at St. George on Staten Island and took the ferry to Manhattan.
 We visited the National 9/11 Memorial on the site of the World Trade Center. This one of two one-acre waterfall reflecting pools; one at the footprint of each tower.

We purchased a CitySight hop on/hop off bus tour. Other than some overbearing tourguides it is a good  way to visit NYC. Ricky and Barb up close w/Lady Liberty. What happened to her flame??

Steve and Becky just before we took a boat cruise around Manhattan.


One World Trade Center (formerly called Freedom Tower?? - ambiguous?) at left is "topped out" and scheduled to open late 2013. I'm not sure what the other skyscraper at right is called. Maybe Two or Three World Trade Center.

I had to take a picture of the beautiful varieties of wild rice Becky and Steve brought from northern Minnesota. I think the color difference is largely a result of different roasting times.

On Aug. 16 Burton and Eileen Kaufman from Marion, SD, stopped by as part of a larger East Coast tour they took which included visiting their daughter and son-in-law in Harrisonburg, VA. Barb gave them a tour of the MCC office. Unfortunately I was at work and missed seeing them, but appreciate the contact. Depending on my condition, we hope to connect with Norman and Darlene Hofer of Freeman, SD, who are visiting here this week.

And those are just a few of the highlights of the summer. We are enjoying more moderate temperatures here now. Thank you for your interest in my well-being and following the blog. Any and all comments are appreciated and give the blogger added stimulus to post.

Tuesday, August 21, 2012

Half-stoned and drowsy for two weeks

It looks like I will be pretty messed up for the next two weeks, until the Friday, August 31, procedure to remove the 5 mm uric acid kidney stone lodged half way down my right-side ureter.

I just got off the phone with a urology nurse AND the doctor that installed the ureter stent and Foley catheter. I called in to Hershey this morning about my ongoing severe pain and discomfort at the bladder since the procedure on Friday and they both said the same thing: Take the Vicadin and suck it up! Not what I wanted to hear. I am also taking Ditropan to relieve bladder spasms. Also antibiotic and FloMax. As you can surmise I have generated quite an array of pill bottles. I am somewhat anti-pill and this takes me out of my comfort zone. I took only straight acetaminophen before bed last night and woke up with pain of .... oh .... I'd say a "7" on the pain scale. Not pleasant, so the call to Hershey was made.

So... here are the trade-offs of Pills vs. Pain (no pills)

Vicadin: altered mental state — Whoopee! So now I'm half-stoned.
               dizziness — I can't drive the car or operate machinery.
               dry mouth — Yup, got that.
               dizziness — Yah, that too.

Ditropan: drowsiness — Oh yeh! I might as well sleep through most of the next 12 days.
                blurred vision — at first I thought my eyeglass prescription needed to be updated.
                dry mouth — This is not fun.
                dizziness — Double my fun.

[One would think that with all those characteristics I am now fully qualified to work in the billing office at Smilebuilderz as most of my billing department colleagues exhibit these traits!!!!!]  (Just kidding.)

That's enough to deal with for now; along with taking care of the Foley catheter and urine bags: Measuring, straining, cleaning, sanitizing.

So, unless I can get off these pills, I will not be able to perform my duties at work. Work has been an important part of my life since the cancer diagnosis. It give me a sense of purpose and well-being. This hanging around home blazed and blitzed is depressing.

In fact, I am falling asleep in front the computer RIGHT NOWWWWWWWwwwwwwwwwwww.

It's an absolutely gorgeous day here in PA. Temp 79°F and low humidity. Windows and doors are open and the air is clean. My enjoyment of the nice air is not impaired by the fact that I am half-wasted.

I'm going to lay down .... again. Later.....


Sunday, August 19, 2012

A new, very real, side show

Hi everyone,

I'm finally back. It's been a great summer. After three 21-day cycles, I took my last chemo pill a week ago. But I did hit a bump in the road Thursday afternoon and night when a pain in my lower right quadrant steadily increased to an excruciating level requiring a trip to the emergency room in Hershey.

We arrived at the ER about 9 pm and I was miserable. On the famous pain scale of 1 to 10, I told therm "12". The ER was packed and they put Barb and me in an ER psych room which offered some peace compared to the hallways filled with ER patients and all the commotion that goes with that. A CTscan was taken and indicated a 5 mm kidney stone lodged about half way down my right side ureter (the tube connecting the kidney to the bladder). I was very happy to hear that. We know what the problem is. It isn't spreading cancer. It isn't appendicitis. There is peace in knowing what ails you no matter how much it hurts.

While I was in a narrow bed in the ER and caught occasional naps, Barb was not so fortunate as the chairs in the room are too high, hard and had useless contours. After a short sleep on a makeshift bed using two chairs, she drove home around 4:30 am. I was given heavy artillery pain killer and checked into a hospital room at 5 am Friday morning.

A urologist stopped by and said uric acid stones are common among cancer patients taking chemo and is quite certain that is what I have. Apparently the kidneys can not keep up with the onslaught of uric acid resulting from the death of so many fast-dividing cells the chemo kills. So the acid crystalizes and turn into "stones".

The stone plugged the ureter which then distended or ballooned when the pee couldn't get through the roadblock on its way to the bladder. That ballooning ureter was my source of pain. So I can add this to my list of chemo side shows.

They said the best way to get rid of the stone is to place a stent in the ureter and catheter into the bladder for a two weeks to allow the inflammation to subside and "clean up" any infection with antibiotics. They said it is too big to pass. They plan to remove the stone in two weeks Aug. 30-31.

I was dismissed at about 1 pm on Saturday after a short tutorial on bagging urine. I was still very uncomfortable but now it was the sensation of having to urinate real badly. I was told that would subside.

When I woke up this morning I was in worse pain than Saturday night. I noticed there was no urine going into the bag so it was obvious there was a urinary retention problem. I called the urologist on call at Penn State Hershey and he said come to the ER to have the catheter irrigated. So at noon today Barb chauffeured me to the ER again as I had buckled over in pain with bladder spasms much like the waves of pain that occur during child birth labor. This wasn't on my wish list either.

A nurse irrigated the catheter and some fairly large blood clots came out. They were blocking the opening into the catheter in the bladder. Whew .... relief. They sent me home w/an irrigation kit in case this happens again.

There is good news in this story. My oncologist, Dr. Nelson Yee, looked at the CT scan and called Barb Friday evening to report that the tumor on the pancreas has not changed since the last CTscan in April. That's fantastic. It's still localized. Barb and I are so glad, happy, ecstatic, overjoyed, about this. I wish to keep it that way, or of course wouldn't complain if it got smaller.

My next oncology appointment is Sept. 7.

This post is way to long and technical but I don't feel like editing it. I'm sure many of you blog followers will find this boring/too much information/too technical/repugnant. I will try to be more philosophic and share some of my deepest innermost feelings in future posts.

My parting wisdom: Be glad for effective pain killers and wonderful anesthetic drugs.

Thanks for your tireless thoughts and prayers for Barb's and my well-being. I believe I am proof they make a real difference ... a "real" I really like and can joyously deal with.

Sunday, July 29, 2012

those lazy, hazy, crazy days of summer ...

Yes, it's long past time to dust off the computer keyboard and hit some of those buttons w/characters on them! I hope you can forgive my blogging laxity as I've been using my time rather selfishly so far this summer. Like the heading says: lazy days. Finally, after more than a month without adding anything new to this blog, guilt has overtaken me in that I have not reciprocated your desire for my well-being. Shame on me.

Anyway, I am having a fabulous summer. I saw my oncologist Friday and started the last of three cycles of oral chemo yesterday. I will be swallowing 10 Xeloda® pills a day for the next 14 days and suffering some mild side effects. Thankfully, so far they are mild and manageable. I'm still going to work full time.

I am scheduled to have a CTscan August 24 and am anxious to know how what the mass on the pancreas is doing. Hopefully, it will stay sleeping, allowing me more time here on top of earth — as opposed to six feet under the earth — 'cause... so far.. I like it here.

I had a great bucket list weekend July-6-8 in Boston w/friend and fellow cancer fighter (prostate) H.A. Penner. We both agreed that we should spend some of our wive's money and take in a major league baseball game at Fenway Park. H.A. is a Phillies fan and I follow the Minnesota Twinkies, so we didn't have anything big at stake at a Boston vs Yankees game. We both favored the home team of course, and wearing the authentic Dustin Pedroia (second base, on DL) jersey, generously given to me by the office manager at Smilebuilderz where I work, I fit in nicely except for my Midwestern accent!!

It was a very nice day. No rain. Not too hot. The game itself was a bit lackluster. The RedSox played rather poorly, fell behind early in the game, and lost to the Yankees. But the stadium, ambience and community feeling were great! We did witness an historic event when during the pre-game activities a plaque was presented by the National Park Service big wigs from Washington designating Fenway Park on the list of National Register of Historic Places. The park ball park opened April 1912, and commemorated its 100th anniversary in April. H.A. and I we wondering if Fenway would be torn down like so many other stadiums, but after this honor it should be around for many decades to come.
I was very impressed with its condition. Owners, or whoever, have done a fabulous job keeping it in great shape. Crowd flows, restrooms and overall space was pretty amazing considering how much more room we seem to need than they did in 1912!

We had excellent seats about 20 rows up.
This iPhone photo makes the game appear much farther away than it was to my eyes.

H.A. and I soaking it in.

Self-portrait. Notice the special "first game" button.

The commemorative patch on my jersey.

H.A. Penner is released from Lancaster County Prison???

Other highlights of the Boston trip include:
   • Dinner at the Union Oyster House — America's oldest continuously open restaurant, established 1826.
   • Asking Siri on my iPhone for eating and parking places and some other challenging questions like "how many prime numbers between 1 and 100?" and getting dumb answers.
   • Looking for public toilets in Boston city.
   • Walking around Harvard Square and visiting the Harvard Bookstore.
   • Late afternoon unplanned snack at Boehringer’s Drive-in in Adamstown, Pennsylvania on the way home.

OTHER SUMMER FUN:
We have been privileged to have some visitors this summer with more coming to visit in the next few weeks.

-- Over July 4 my first cousin Don Harkcom and his wife Kay came from Hudson, Wisc. We had a great time just hanging out, preparing home-cooked meals and playing board games.

-- July 10-12 we were honored to have Renee Neufeld of Hurley, SD, take time off her incredible thru-hike of the Appalachian Trail. Barb picked her up and dropped her off the trail at Port Clinton, PA. What a remarkable woman hiking an amazing trail! I, most likely as most of you, can not fully appreciate and get a grasp of this tremendous challenge. This trail is 2184 miles long! It stretches from Georgia to Maine. And it is nothing like the terrain we flatlanders of eastern South Dakota know.  I recommend all of you to follow her awe-inspiring journey here.

-- We also visited with Amy Kaufman, a Marion, SD, native who was here for orientation at Mennonite Central Committee, here in Akron. She has accepted a 3-year term serving w/MCC in Myanmar (formerly known as Burma).

-- The week of July 18 we had the honor of taking three returning SALTers (Serving and Learning Together) with common North Church (Salem-Zion Mennonite, Freeman, SD) connections out for dessert at CafĂ© Chocolate in Lititz. All three have or had grandparents and parents who attended North Church, which is also my home church. They are:
  • Neah Ortman of Seattle, WA, returned from a year in Burkina Faso. She is the granddaughter of Delmar and Maxine Ortman of Marion, SD.
  • Ben Stucky of near Pittsburgh, PA, returned from a year in Kenya, is the grandson of LaNae and Laverne Waltner (rest in peace) of Freeman, SD.
  • Michael Linscheid of Reedley, CA, returned from Honduras, He is the grandson of Hilbert and Erna Graber (both rest in peace) of Freeman, SD.

These are very mature, bright young people. We were impressed hearing about some of their experiences and are very proud of them. We wish them the very best in whatever their future holds. 


-- Last Sunday Torrie Martin, Jim King, Barb and I took a fun, relaxing and enjoyable road trip to the James A. Michener Art Museum in Doylestown, PA. They had a special large and impressive display of works by Renaissance artists that was remarkable, especially the condition of the works was hard to believe.

-- This past week we had a delightful evening in Gretna, including eating at the Jigger shop and relaxing in rockers on a veranda with Leroy and Janette Epp of Marion, SD, and H.A. and Barb Penner. It was valuable time together catching up on the South Dakota news and each others lives.

-- This coming week we look forward to having my brother, Reed and wife, Susan, from Marion, SD, visit us. I think it will be their first time to Lancaster County and we anticipate exploring the area together.

 -- The following week Barb's sister, Becky and husband, Steve, will be visiting from Bemidji, Minn. Again, looking forward to good times.

And of course I am in heaven with all this fresh garden produce. Especially fresh tomatoes, sweet corn, green beans, watermelon, muskmelons, etc. I have Barb to thank for some of it as she has kept a nice couple of garden patches here on MCC grounds. What a great time of the year! I hope all of you are able to enjoy it as much as I am.