The surprise of my life!

Last week was my NO CHEMO week! And that helped me last Thursday starting out just great. I was feeling fine and went to work for eight hours. Meanwhile, Barb, who recently lost her passport, made a trip to Philly to expedite getting a new passport - fast - needed for her upcoming trip to Canada the end of this month.

I came home pretty shelled and took a late afternoon nap while Barb was still in Philly meeting with MCC East Coast colleagues. I cooked some Johnsonville brats, sugar peas and penne for supper during which Barb texted me that she decided to stop and shop at IKEA - the Swedish self-assemble furniture and housewares box store. She knows it's better for her to do that without me because I have started to express resistance to IKEA shopping.

She texted an hour later that she didn't start home when she planned and would be home a little late. Meanwhile, whilst washing some dishes (we don't have a dishwasher) I was overcome with the need to visit what we pancreatic cancer survivors call the "necessary room". While on the throne I heard Barb come home. I hear her come in the kitchen door and through the bathroom door we greet each other. And she says, "I have a full van to unload". And I think, "Oh no, what kind of buying binge did Barb go on? and what uncomfortable IKEA furniture did she buy?"

I finish my business and walked directly the sink to finish the dishes, so I could help Barb unload the van. Then Barb comes up behind me and said, "Look what I've got." I turn around and see her holding what looked like our grandson, Owen, who lives in Fresno, Calif. At very first instant, I thought she had a special life-size doll of Owen made for us to play and engage with during our long absences. Then Owen moved his head and I thought: "What an incredible doll! A perfect replica in every way. And animatronic too." I could not believe at first that she was actually holding our live grandson — but she was. But where were Owen's mom and dad? Barb didn't kidnap Owen, did she?

Soon our son, Adam, wife, Annie, from Fresno AND, low and behold, our other son, Charles, and hist friend, Anna, from Seattle, Wash., came through the kitchen archway to greet me. I can not describe how absolutely blown away I was. I fell apart as I greeted each one with a hug and tear-filled eyes. They had come to visit me for Father's Day and had kept me totally out of the loop! It was a total surprise to me. Barb and the family had secretly and very successfully organized these trips all the way to PA. Now Barb did mention something a few week's ago about a surprise for Father's Day. She asked me if I wanted to know what she was planning. I said I was indifferent, thinking she was planning a weekend away to the beach or fly to Detroit to see the Twins play the Tigers in Comerica Park, or who knows what. But THIS? It did not cross my mind.

The family will be flying out on Tuesday. Barb also secretly arrange for me to have Friday and Monday off work. Thank you, Smilebuilderz, LLC! We went to Hans Herr Music in the Orchard last night and had a picnic with our church small group at Long's Park summer music concert tonight. Adam contributed to our church worship this morning with an interesting presentation on "Protest and Public Art". He focused on public art about/protesting US military use of drones. I was so happy to see him in his teacher mode. He gives a damn good lecture, if I am allowed to brag a little. I would enjoy taking a class of his.

We've played a few hands of a Monopoly Deal card game that was new to me and has ambiguous/incomplete rules regarding the use of Wild Cards, which has resulted in some lively discussions and raised tensions. But we spend most of our time gazing at and playing with Owen who is so engaging and fun. He is a very relaxed, cute, charming baby. Having him visit and become a little more familiar with his hairless, saggy- and wrinkle-skinned, scary-looking grandpa has meant so much to me. At first he wasn't sure what to think of me. He had some fear or reservations, but definitely "knows" me better after a couple of days and we get along great. Grandbee Barb is also energized by the family visit and the opportunity to spoil him.

So, this is definitely my most memorable and best Father's Day ever. It has decidedly pushed a memorable Father's Day about 10 years ago into second place. That's when the family decided to buy me a Big Green Egg outdoor charcoal grill/cooker/smoker. They knew I wanted one, but we all had difficulty justifying spending $800 for an outdoor cooker. But they did and I've had loads of fun with it and the family has benefitted from some pretty good food off that grill.

I hope all the dad's out there had a great Fathers Day. I sure am having a great 4-day Father's Day that could well be the envy of other dads out there. I'm so blessed to have such a great loving family.

I'll try to post some pictures later and up date you on my cancer as well.

Ricky

Ups and Downs

Okay, it's time for a status update.

In a nutshell, I continue to ride the cancer/chemo roller coaster —which we unaffectionately call the 'chemo coaster'. I know it's cliché, but reality is I have my ups and downs, my highs and lows. Admittedly, the highs seem less high and less frequent than in the past. I have some overall "up" days and weeks (mostly when on chemo break), but within those larger time frames my distress level changes from hour to hour; especially since I've been having digestion issues. Today, for example, I woke up feeling great. After a small breakfast w/chemo pills I still felt fine until two hours later, within minutes, I felt terrible. Missed church.

Here is a timeline to bring you up-to-date with more details, blow-by-blow (boring):

November 2011 — CT shows mass on pancreas

December 2012 — Biopsy shows cancer. Diagnosis: pancreatic adenocarcinoma

Fast forward 2-1/2 years and 60 pounds later (lighter) to—

May 20, 2014 — Barb and I met w/hospice nurse (Lancaster city - not Hershey)to learn more about hospice options. I'm not hospice-ready now thankfully, but she is referring me to some palliative care physicians who may have some help for my dehydration and my diarrhetic malaise. So far no call from that doc and I will need to followup on this.

May 21, 2014 — I had blood test and visit w/Dr. Yee. I was scheduled for chemo as well, but wimped out, pleading too fatigued and weak. Blood T-marker came down from 375 to 300 which is a nice reverse in a bad trend. He explained some options we may have, depending on the outcome of the upcoming PET scan. He agreed to infuse a jug of saline to re-hydrate me since my port was accessed and chemo chair was reserved. I can assure you no matter what the scan shows he wants to keep chemo going with not much regard for my weight loss and defecation disorder. I/we will have some decisions to make coming up.

Friday, May 23 — I was anticipating and prepped for a first-ever for me PET scan to have a look at my innards in a different way, in a different light. Upon check-in we were surprised and disappointed to learn that my insurance denied authorization for the procedure. They cost about twice as much as a CT scan and are normally authorized when cancer is Stage IV.. So I had a contrast enhanced CT scan instead of the PET scan. I felt rotten that evening.

Wed., May 28 — discussed CT scan w/Dr. Yee. The great news is there is no sign of spreading cancer! No findings of metastatic disease in the chest, abdomen and pelvis (scanned). It is still locally advanced, but contained. I'm fine with this result. There is some enlargement and further dilation of the pancreatic duct which will be watched. We discuss treatment. I am feeling great due to two week's off chemo and reluctantly agree to start a new cycle of the same chemo I've been on: Abraxane infusion once a week for two weeks and Xeloda oral chemo (two pills every morning and two pills every night) during those same two weeks. So I go on a chemo "picnic" and also receive two units of blood to help my anemia. It was a long day in the infusion room from 10:30 to 4 pm. My faithful wife by my side the whole time. She is really wonderful.
Friday May 30 — wasn't scheduled to work and was happy for that because I felt chemo-crappy the whole day.

Saturday, May 31 — felt much better and went into work for 8 hours with a nice one-hour lunch break with Bob and Phyllis Hartzler and Barb.

Tuesday, June 3 — we meet with a gastroenterologist at Hershey about my trots. We are not expecting much new from this, but feel it can't hurt to get another opinion about how to battle diarrhea.


Wed., June 4 — chemo infusion in Hershey

Thursday, June 5 — Neulasta injection in Hershey to stimulate white blood cell growth.

Monday, June 9 — Endoscopy in Hershey snip some more tumor tissue for another biopsy. This is for genetic testing the cancer cells to better inform the doctor which chemo is most effective. It is called CARIS testing.

I'll stop there for now. As you can see there are many trips to Hershey. Amidst all this I am working on getting Medicare coverage and supplemental insurances in place. Also, I don't understand my disability insurance and want to learn what I have, now that I qualify for Social Security. It's all a lot to ponder - sometimes in a fog.

That's it. It's an interesting journey. I don't recommend it to anyone. Thankful for the time I've been allowed and am looking forward to the summer heat as I am often still wearing sweatshirts. And I most certainly appreciate my support systems. All are wonderful. Videos of grandson, Owen, and FaceTime with him and family are highlights of my days.

On the "support" note, I am very, very happy to report that Barb is starting a new work schedule tomorrow, wherein she will be working a flexible half time schedule using accumulated Family Medical Leave and sick days. She has worked 15 years for Mennonite Central Committee and she really appreciates and values this pressure valve release. I feel bad that I burn up so much what should be her personal time. She's a saint. Plain and simple.

Later,
love,
Ricky