Rank your pain on a scale of 1 to 10

    Next to my birth date, medical personnel most often ask me to rate my pain on a scale of one to ten. I always stumble answering and have trouble doing this on several levels:

• Why leave out zero as a choice? It should be 0-10. Zero is real. I could have and strive for no - zero - pain.
• What kind of pain are they asking me about? I'm pretty sure they are interested in physical pain. But I want to be a smart ass (as is my way) and ask back if they want to know about my spiritual pain, emotional pain, financial pain (thanks Europe!), marital/relational pain or other "pains" I may have?
• What does #10 physical pain feel like? I believe we each have a different range or spectrum of pain experience and a different tolerance. I've never birthed a child or had a limb severed. I've slept through major surgery. I just know I don't want 10 or 9 or.......
• I have trouble expressing, understanding, knowing feeling. Like other Specks — a family nickname (German origin, pronounced "shpeck", means bacon or fat,) originally given to my uncle Charles Schrag, but spilling over to my dad, Orlando, and now his sons — I have the special talent of not being in touch with my feelings most of the time — including pain. 

    Seriously, I feel quite well. I have occasional dull discomfort in my guts region (is that vague enough) that actually moves around. I've had some chest pain and back pain behind the right shoulder blade. But it's not bad. I usually say "2" on the pain scale. I have taken only two Tylenol since getting out of the hospital Dec. 15 when the pancreas had a hissy fit.

    I do have, however, a generally full, sometimes bloated feeling in the stomach. One of the first clues something was wrong this fall was that beer no longer appealed to me. That is a red flag. It was because the gases in beer only made me feel more bloated. That is a problem. Bottom line: I feel fine physically and I felt I owed it to my blog readers to discuss how I feel. 

    We leave for the Harrisburg PA airport in an hour to fly to Seattle to have a highly anticipated family time with Charles and Anna, who live there, and Adam and fiancée Annie, flying in from Mpls. I hope we can spend the better part of the day as a family in a Verizon store (inside joke, or maybe others with family calling plans can relate). Barb just loves to discuss cell phone plans and equipment. "Speck" skepticism and distrust can reach new levels in a cell phone store. I'll try posting when there. Thanks everyone and Happy New Year.

The fight plan

    We now have a plan to curb the cancer.
    We are going to fight it with six weeks of simultaneous chemo (Gemzar) and radiation starting Friday, Jan. 6. It's rather conventional treatment. Nothing exotic. No herbs, acupuncture, laetrile or the like. We are confident the chemo/radiation plan will work.
    The six chemo infusions will be once a week on Fridays and take about 30 minutes.
    The radiation will be 28 treatments Monday-Fridays. Its start will lag the chemo by about two weeks.
    Initially, we thought I could have the Hershey Medical Center radiation oncologist as my doctor, but get radiated in Lancaster. It turns out that plan will not work as there are different "platforms" used at different places, based on the equipment and treatment plan. So instead of dealing with two different institutions we decided to go to Hershey for radiation as well; keeping it all under "one roof". That way if there are any problems during treatment we don't have to deal with poor communications or blaming each other. I know that can be messy. The oncologist and the radiation oncologist can talk to each other in the hallway at Hershey. It is a 50 minute drive, one way. Depending on my side effects, I will likely be calling people to help give me some rides.
    My oncologist is Nelson Yee. My radiation oncologist is Heath Mackley. We are very impressed with both of them. We visited Mackley on Tuesday and decided then to use his expertise. Mackley minored in psych and philosophy in college and much of that is evident in his website here. I recommend you go there and read some of his essays. I like his style. I did not, however, enjoy hearing some of the possible problems/side effects of radiation.
    Friday, Jan. 6 will be very busy day at Hershey: starting at 8 am:

• radiation mapping
• blood work
• CTscan to set a baseline for the tumor for future diagnosis/treatment
• first chemo infusion

    So, at least for now, that's how we plan to "deal with the real".
    After reading over this post I realized it has a tone indicating that we really have a grasp of the situation. Believe me, that is not the case. Our heads are spinning. We continue to ask for your prayers for peace of mind in the decisions we've made so far and the choice of medical services and treatment. Thanks for your support.

Peanuts, chocolate milk and dandelions

     We attended the Christmas Eve service at our church — Pilgrims Mennonite Church — which rents and meets at the MCC Meeting Place in Akron - right behind the MCC headquarters. Our church small group was in charge of setup and cleanup which includes beverages after the service. We have missed the traditional Christmas choir program "afterglow" at Salem-Zion, so Barb and I decided to share/introduce the chocolate milk and peanuts roasted-in-the-shell tradition to Pilgrims and .... it was a hit! There were, of course, fruits, cookies and bars as well.
    Christmas Day was nice and relaxing; a chance to slow down the whirling in the head from last week's numbing news. Like much of the US, it was not a "white" Christmas, but it wasn't a "brown" Christmas either, but a "green" Christmas with verdant lawns and meadows. During our walk in sunny Roland Park we spotted several dandelions – a most unusual Christmas flower. We also still have fresh cilantro, chives, parsley and rosemary growing with vigor outside our home.

Here's the deal....

    After several week's of procrastinating I've decided the smart thing is to start blogging as a means of communicating with my family and friends about my situation. I never gave much thought to having my own journal for anyone to read. (I am actually uncomfortable with the concept.)  However, I was so inspired by my brother Mark's interesting recording of his journey with pancreatic cancer with a blog called Consider This, that I have decided to follow his example. Herewith are some ramblings about my journey with pancreatic cancer. Yes, it is the real deal: CANCER!
    Here is a brief history to this point including good news, bad, news, waiting and terrible news:
    • September 2011 I started having issues with my digestive system.
    • October - problems persist and increase. I think about possibly having Crohn's, irritable bowel syndrome or diverticulitis. Have doctor's visit and blood tests. Liver numbers a little high.
    • November - second doctor's appointment, orders CT scan
    • November 21 - Bad News! CTscan results: 2" mass on the head of my pancreas. I decide to go to Hershey Medical Center in Hershey, PA, for diagnosis and treatment.
    • Dec. 5 - Endoscopy (through mouth, esophagus, stomach) done to get tissue and install a stent in the bile duct to help my digestion.
    • Dec. 6 - Bad News - go to ER at Hershey medical center with acute pancreatitis resulting from the endoscopies upsetting the fussy little pancreas.
    • Dec. 7 - A doctor informs me the eight brushes or swipes made on Monday came back negative. Good News.
    • Dec. 8 - A surgical oncologist comes into my room and says: "hold the horses on that. we need to have another biopsy because blood marker and visuals show classic pancreatic cancer. Results are inconclusive. Bad News. Go home feeling better than I had in a long time. Good News.
    • Dec. 16 - Have an ultrasound guided needle biopsy from outside the gut to the pancreas (I am still in awe of how they do this). Now we wait another week until a dual appointment with an oncologist and a surgical oncologist.
    • Dec. 23 - Meet with oncologist, Dr. Nelson Yee, who tells us that I have pancreatic cancer. Biopsies along with other diagnoses are conclusive and accurate. Of the various types it's the Patrick Swayze or Mark Schrag type and not the Steve Jobs type. It's called adenocarcinoma. It is Stage 3 Grade 1 which means it has grown into major blood vessels. Very bad news. But has not metastasized or possibly not invaded lymph nodes. Kinda good news, maybe?? Then we met with the surgeon who said this tumor can not be resected because it's embedding the blood vessels. "Not ever," he said. Surgery is far too risky. This was crushing news as I knew my best chance to beat this was whipple surgery, or some kind of REMOVAL OF THE OFFENDING TUMOR! Bottom line: There is no cure.
    A look into our future — I will be on a six week chemo and radiation treatment starting Jan. 6. Then a month off to recover. Then another CT scan to see if the bugger has shrunk. Then more chemo. More details later.
    Right now I am trying to process all this cheery news and it is not easy. I am scared, stressed and angry – all at the same time. (I am not angry at any person or group, you understand) So I ask for your continued prayers for peace, courage and strength as we go ahead into 2012. We are very grateful to be part of so many supporting families - home/biological, church, work, friends. And I have the utmost respect for and confidence in the medical team we've been seeing. Finally, I'm really lucky to have Barb, who has gone through three cancer diagnoses and all kinds of treatments, to help me. She has shown a great example of how to face this crap head on.
    Sorry for the cold, lengthy post. I may try to be more human in later posts.
    Best personal wishes at Christmas and throughout the New Year.