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.