Have Tumor — Will Travel

I'm not sure what mind association caused that blog title to pop into my head? Maybe because of all the hullabaloo about gun control? Or maybe because I had just watched Rob Reiner's film Stand by Me last week and the four young lads were singing the TV show theme song as they merrily went down the road on their way to find the body. Some of you younger blog readers likely do not know what reference I'm making and may not be familiar with the TV Western series Have Gun—Will Travel starring Richard Boone as Paladin which aired from 1959 to 1963.

We didn't watch this show on our brand new Sylvania with Halo-light purchased around 1956 when I was 8. (TV viewing was a family affair.) It's main character, Paladin, dressed all black and the guns... it was too dark and violent and went against our Mennonite values. Sam Peckinpah directed some of the shows. Gunsmoke was the preferred Western.

I always said we were the last in East Freeman to get a TV, but then everyone else thought they were the last ones to get TV. So who knows? I'll never forget the winter night our whole family piled into the car and drove over to TV dealer/repairman Eddie Schmeichel's house and ordered the set. I think dad plunked down about $300 for the 21" mahogany cabinet tube set — a fair number of bushels of corn back then. What is $300 in today's dollars? It was very exciting. Eddie delivered it to our farm and we set up a roof antenna the next day or so and entered the world of television.

Incidentally, I hadn't seen Stand by Me for 26 years (released 1986) and it was great to see it again. I was very glad I decided to re-visit it. If you haven't seen it, rent it. It's a terribly good movie as my sister-in-law, Sara, would say.

First, a short update. This is all about me after all! How am I feeling? Very well, thank you. I am in the middle of my 9-week oral chemotherapy regimen. Ten pills every day. Five after breakfast and five after supper. Not too many side shows. Much like during my last chemo. Some dizziness. Some diarrhea. Some headache. Some sleeplessness. Some fatigue. No hand-foot syndrome. No hair loss. No nausea. No vomiting. No low white cell counts. No colds. No flu. No diet restrictions. Robust appetite. I've actually gained about six pounds. I keep taking enzymes to help digest food. I also have the fun of giving myself a subcutaneous injection in my "love handles" every evening with heparin to reduce the possibility of a blood clot. Some cancer tumors, such as pancreatic, generate blood clotting proteins, so it looks like the shots are with me for a long time. My brother, Mark, had a stroke during his battle w/pancreatic cancer.

In summary: Physically, I'm doing very damn well. Lucky, I think. Emotionally? Who knows. I suppress, you know. How do I cope? I just keep living. I follow three coping skills offered by Barbara Reed who spoke at our church about living with her husband who has Alzheimers:

• I will not try to cross any bridges until I get there. (This is a natural for the Specks)
• I will not fight what I can not change.
• I will not / do not feel dread. I have joy today.

I still work full time, although I did change one 12-hour work day (Tuesday) I'm supposed to work to an 8-hour day.

I am out of time and I have not gotten to The Tumor's travels out West over the Holidays. Stay tuned. And thanks for all the encouragement and concern.

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.

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.

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.

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. 

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.

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.