Encountering potholes

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

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

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

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

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

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

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

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

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

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

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

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

Ricky

90-day report is mostly good

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

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

SOME BITTER PILLS TO SWALLOW

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

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

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

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

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

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

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

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

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

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

Our winter of discontent

(apologies to John Steinbeck)

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

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

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

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

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

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

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

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

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

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

Happy Valentine's Day to everyone.

On leaving "Vandom"

Saying goodbye to the blue van.

or

"Out with the old. In with the new."

Last Saturday Barb and I drove our trusty blue Toyota Sienna minivan into the sunset — both literally and figuratively.

After owning and driving a Toyota minivan for the last 22 years it was a difficult and emotional "goodbye" while cleaning our stuff out of "her" after trading "her" in at a Toyota dealership in Lancaster city ... west of here.

Our love affair with Toyota vans started in 1991 when we purchased a used late 1980s silver one with the engine between the front seats from Leonard Wiens at Wiens Auto Mart. Barb recalls we bought it in preparation for a vacation trip to Yellowstone Nat'l Park with Elle when she was an IVEPer (International Visitor Exchange Program) at the Et Cetera Shoppe in Freeman. I affectionately nicknamed it the "Aardvark". Somehow it seemed equally as odd as the animal and the name popped into my head.

We drove the wheels off that van. Hauling soccer kids all over the country. Loading it to bumper-to-bumper and floor-to-ceiling with SelfHelp (now Ten Thousand Villages) items for offsite sales. It was an unusual designed vehicle and fun to drive with the front seats right on top of the front axle.

The "Aardvark" looked something like this.

Shortly after the silver one "died" in a traffic accident we went shopping for another van. Barb and I bought the slightly used blue 2002 Sienna rather impetuously Jan. 3, 2004 from the Toyota dealer in Sioux Falls. We hardly looked around. I pushed to buy and Barb was having difficulty breathing from being so scared about spending (read: borrowing) the amount of money we needed to buy the van. I (and a salesman who used scarcity to pressure us) prevailed. I will never forget another couple really wanted to drive it while we were "thinking" about it.

We never looked back. That van, as well, served us very well and Barb could haul lumber in it and Barb did haul lumber in it. We hauled all kinds of shit in it. Bicycles. Kids. College dorm rooms. We took the rear seats out and hauled furniture all around Newton, Kansas to set up an MCC office one time. Barb loaded it to the roof when she moved to Akron. We stuffed things into that van that I swore wouldn't fit in it.

I told Barb as we were wheeling and dealing on a new car last week that the van treated us very well and didn't owe us anything.

But "she" was getting into her senior years with 175,000 miles on "her". She still ran great and I recently paid $85 to fix a fussy and rattly side door. (I'm writing about the van here.. not Barb)

I've heard that we Americans have a psychological need to spend big bucks about twice year. We require these big consumer urges be satisfied for our well-being. Well, a wave of desire to spend (borrow) alot of money came over me and I was able to convince Barb it was time for a change in vehicles.

You see the mileage on the van was averaging 22 mpg. Also, the turning radius lock-to-lock was horrible. And that's not a good thing out here in the more congested East Coast. I thought: let's move up while it's still working well and has some value.

What to buy? That was difficult for us. Buying vehicles has never been my favorite activity. Barb maybe handles that better than I do. For me it is a "buy one and get it done" situation. Barb does tend to go into "shock" though when she becomes overwhelmed by the choices and then the big dollar figures. I handle that more coolly (on the surface, at least).

Since we loved vans and their cargo space and we had a cargo hitch for a bike rack too.... we were having problems deciding what to get next. With my "bucket list" dream of driving a luxury sedan, Barb had to grab the steering wheel to keep me from driving into the BMW and Mercedes dealerships and going off the deep end into debt. (After telling him about our car shopping, her boss quipped: "Barb, how could you deprive a dying man a BMW?")

We liked the cargo space and seat height of the van. We drove a Honda Accord but kept being drawn to something with more more room. We decided a brand new 2013 Toyota RAV4 — which is a compact SUV — fit the bill.

It has all-wheel drive. Sits high. Gets better gas mileage. Turns on a dime (which is really nice). Has a new windshield. Wow, I never realized how pitted our old one was. Drives nice. Had five miles on the odometer. Also had zero percent interest financing.

Our new vehicle (I can't really call it a "car") looks like this.

The new vehicle has some gadgets and wizardry that we didn't particularly want or need but the options were not plentiful - which - in hindsight - probably helped gravitate us to this car. From about seven 2013 models on hand with their only difference being exterior and interior color combinations, we picked the red one off the showroom floor because Barb really liked the interior color of coordinated gray and black. Barb and I have reassured each other that we are pleased with our decision and have no buyer's remorse but will hold the memories of our vans close.

Today, Barb drove me to Hershey, PA, in our new vehicle. I had a chemo infusion this morning. We were back by noon and, after eating lunch, I went to work for about six hours While the chemo does give me fatigue I don't get hit hard by it.

My blood tumor marker was 172; up a little from my last one of 164, but I don't see that as alarming in the larger scheme of things. All my other blood work looked good - white cells, platelets, kidney function, etc. so they accessed my medi-port (I DO NOT miss those venipunctures from the flexor aspect, or inside, of my elbows.)

Next on the agenda is a CT scan on Feb. 17 and visit about treatment with oncologist on Feb. 19 and I  presume chemo of some kind then. I am doing well. No pain. Enzyme pills help me digest food.

I can not overstate how thankful I am for the many ways all of you give me encouragement and support. It sustains me and makes my life so much better. Thanks!

Ricky

Glad to see 2014

When learning you have cancer, life becomes an "inch-by-inch" journey. Those inches add up to feet, yards and miles. (apologies to the rest of the world on the metric system. "centimeter by centimeter" doesn't have the same ring)

Embarking on a new year is like going a mile when your mortality is dangling in front of you. I am very happy to be here in 2014. 

After a wonderful glorious 5-week break from treatments, I had chemo [once/week] the two weeks bridging the old and new year and am currently on a two-week break. My current chemo cycle is two weeks on - two weeks off. (for my fellow pancreatic cancer fighters I am getting straight Abraxane {neat})

The first day after chemo my eyes began to bother me again. They not only dry out but become very irritated and often painful to keep open. I use artificial tears frequently but they don't help that much.
I also have Rx steroid eye drops. The relief from those is short as well. Being in front of a computer screen all day at work doesn't help I'm sure. When I get home I often close my eyes and nap to get relief. Other chemo side affects include fatigue, sleeplessness, constant runny nose and bloody mucous/sinus crap.

The good news is I don't suffer from nausea or vomiting and my appetite is good and I can eat whatever I want.

Other good news is that my blood tumor marker (CA19-9) is hanging around 145 which is a very good number. Next chemo is Jan. 22 and 29. 

For the benefit of my readers, I feel compelled to share again the symptoms I had that led to my diagnosis. Pancreatic cancer is a sneaky critter. This important but under-appreciated gland is hidden in your gut and cancer on it is hard to detect. Unlike colon, breast and prostate, there is no common standard screening test. Depending on it's location on the gland, it is often not painful. Because it's tucked up under the stomach and duodenum, the tumor is not readily palpable.

Here are some clues (ugly ones at that) to watch for, indicating there may be a problem:

• unplanned weight loss (fat is not digested/absorbed)
• clay-colored stools (obstructed biliary outflow)
• feeling more "full" than usual after eating
• diarrhea
• floating feces (high fat content - lighter than water)
• feces has oily appearance due to excess lipids
• especially foul-smelling feces
• vitamin D level is low (this requires a test. The body uses fat to adsorb vitamin D)

These were my indicators, there are numerous others: jaundice, pain in the upper abdomen, nausea, vomiting, heartburn, pulmonary embolism to name a few.

It pretty much takes a CT scan or PET scan to "see" if there is a problem.

I felt I owe it to you to remind you to be on the alert for all kinds of cancer.

I am using a "blend" of modern medicine and your prayers to fight the beast and stay well. So far it is working remarkably well and I would like to stay with this plan for now.

adieu.

ricky

It's that time of the year

Merry Christmas to you and me!

It's beginning to look alot like Christmas ….

I am so happy to still be around for Christmas 2013 and seeing in the New Year 2014. I was never sure what to expect about being present for these holidays. My goal is to be around for several more.

Merry Christmas to me because it has been wonderful. This year we are hosting Schrag Christmas in Pennsylvania and enjoying the heck out of it!!!

Of course grandson Owen - who turned three months old on Sunday - is the center of our attention. Who cares about shoofly pie or horses and buggies or other Lancaster County traditions? We have the cutest, smartest baby in our midst. I am looking for a bumper sticker that says: "My 3-month-old grandson is an honor student". He will be going to Harvard University in just a few years. Right now, in fact, he is helping grandma Barb play Scrabble against uncle Charles while his mom and dad are in the kitchen cooking up a wild rice dish for Christmas dinner.

We've had alot of fun mixing cultures such as having scrapple McMuffins for breakfast; a new blending of Dutch and "English" (muffins). And Barb and Charles made yummy lefsa for a nice Scandinavian touch.

Grandma and Owen "conversing"

The Family is Happy!

Ricky's dome. Off chemo for five weeks,  I gave my Gillette Mach 3 a rest
and presented myself as a gift to my family as a Chia Pet: Chia Ricky.

With no chemo infusions for the past five weeks I am feeling great. My appetite is very good. I have no diet restrictions and just keep popping the Creon enzyme pills to help with digestion. My weight is stable. I attribute my avoidance of any colds and flu largely to the fact that I get plenty of rest and drink lots of fluids. As someone with pancreatic cancer I couldn't ask to be feeling any better. I will start chemo again on Thursday, December 26. :-(    Oh well, I have to keep on top of fighting this unwelcome guest.

I have been posting less than I probably should but am very aware of the importance of letting you know my status. In an earlier post I mentioned that writing a blog is not my favorite activity, but am so thankful that I can connect with you this way and will not abandon it. I realize how much I am blessed by it and how important it is to me on several levels.

Next to God Incarnate the greatest gift I have this Christmas is your encouragement, prayers and expressions of concern and love. Come to think of it … your gifts ARE God Incarnate!!!! What was I thinking? I only wish there was some way to give you all gifts as meaningful and special in return!

My wish is that each of you are having as great a sleigh ride as I am.

For now Barb and I and family wish you and yours a very Merry Christmas and Peace in the New Year.

Two years and counting

Dear faithful followers,
Greetings from your delinquent blogger.
I've waited for some time to give you my "quarterly" report. It is time to tell you that I am

             … happy …. no,
                  …  euphoric …
                      … amped…
                          … pumped …
                                … stoked …

[pick and add the modern vernacular noun of your choice]

about my most recent (Nov. 13) CTscan results: the tumor is stable! No activity. It is the same size. No metastasis. No sign of rebel terrorist cancer cells attacking some other part of my body. I am just plain "pleased as punch" (to quote Hubert Humphrey).

Dr. Yee orders CTscans every 90 days (hence "quarterly reports") and they just keep rolling in on the positive side. What great news for me. It is a most pleasant cycle of reports which I hope will keep on keeping on.

Two years ago this coming Tuesday before Thanksgiving I got the phone call from my PCP that I had a mass on my pancreas. Almost instantly a thick heavy cloud came over me. I mean it was very dark below this hanging cloud with very little light coming through. I knew in my mind that the sun was still shining on the other side of the low, dense cloud - but for a few days I saw very little light. I didn't get the actual "official" cancer diagnosis until December 2011, but I was never very hopeful that the test would show a cancer-free mass on the pancreas. I had never heard of a mass on the pancreas NOT being cancerous.

Amazingly, miraculously over the past two years the cloud has lifted and thinned and broken up into much smaller fluffy clouds. This past week the skies have been clear with the sun shining brightly.

Along with the fabulous "pictures" of my gut came a good lab report on the blood serum cancer test CA19-9. Here are my most recent results. The lower the number, the better the report. Notice the downward trend. Yippeeee!

116.6 unit/mL Date Nov. 20, 2013 - High 

134.8 unit/mL Date Nov. 11, 2013 - High 

172.4 unit/mL Date Oct. 30, 2013 - High 

174.5 unit/mL Date Oct. 23, 2013 - High 

181.8 unit/mL Date Oct. 16, 2013 - High 

After some complaining by me about the side effects of chemo, Dr Yee agreed to change my treatments from once a week — three weeks on, one week off — to:  two weeks on, two weeks off. I have just finished my first two weeks on and will not go back for chemo until Dec. 11 and 18. My chemo is on Wednesdays in Hershey, PA, at the Penn State Cancer Institute.

Over the two years I have found and collected several "cancer" blogs/CaringBridge journals, etc. and created my own folder bookmarked on my browser titled "cancer blogs". That in itself is a rather sad, dark story. But, naturally, through these blogs we who have been stricken with cancer can follow each others journeys and give each other encouragement and I find encouragement in reading them.

Writing a blog is not easy for me and honestly not that much fun. I resonated with the feeling shared by a fellow cancer blogger who wrote that if he had known he was going to live this long he would not have started blogging so soon!!

But, I AM happy to share great news and, when it comes, will share the sad news as well. 

Non-cancer news would be that Barb and I took a day trip to New York City yesterday to see the 2 pm performance of the off-broadway play "The Preacher and the Shrink". It was written by Merle Good, a Lancaster County Mennonite whose wife Phyllis Pellman Good wrote the "Fix It and Forget It" slow cooker cookbooks and own/operate several businesses in Intercourse. We joined a group of 54 other countians on a chartered bus. The play offers much food for thought regarding relationship and religion.

We had a great visit by South Dakotans Marlyce Miller and Janette Epp last weekend. (Thanks for the Freeman bologna, Dimock colby cheese, pepper nuts and other goodies, girls!)

We are planning on having some guests for Thanksgiving and look forward to serving up a traditional dinner. 

We both keep plenty busy. Barb especially with her work and home projects has a very full plate. Obviously, we have much to be grateful for. I am especially thankful for the many ways you bear me up.

We send all of you warmest Thanksgiving greetings and may you find happiness in the bounty of nature and your lives.