(Broken) Back from Vacation

I've had some "interesting", eventful vacations and trips since I last wrote to you. This blog post started out as an update on our summer vacations and trips. You will see that as the trip report progress they are less about our leisure time and more about my recent condition. 

Vacation to Lewes, Delaware:
Friends of ours, Dean and Becky Good, own a house in Lewes, Delaware, a popular beach town and the first city in the first state. They generously invite people to join them for a weekend at the beach. We enjoyed good food, friends and lovely weather and walks along the shore.

Vacation from chemotherapy:
I haven't had chemo for 5-1/2 weeks and have gained 8 lbs - up to  159 lbs from 151 lbs. I've had fewer bouts with indigestion and feel much better. I am scheduled for blood test and appt with Dr. Yee Aug. 20. If prior history is an indication my tumor marker will be up considerable - but one never nows for sure. It is difficult to decide what treatment to take and when to stop. It isn't easy.

Vacation to SoDak and Minnesota:
Barb and I took a road trip west in the Toyota RAV4 July 28-Aug 12. Barb drove the whole distance of 4020 miles including some side trips. We picked up Adam, Annie and Owen in Mpls and went on to Freeman, SD to visit friends and family. While there I attended the Freeman Junior College/Freeman Academy alumni banquet along with my 92-year-old mother, Verda. She was the only one from the class of 1939 attending. And our son Charles was the youngest attendee from the class of 2004. 

Owen is not real sure about  great grandma Verda holding him.

We said goodbye to Adam, Annie and Owen early Tuesday morning and with Charles we headed to northern Minnesota for a Baird family 'rebellion' at Cass Lake. All but one of Barb's siblings were able to make it and many of their children, spouses and grand nieces and nephews - in all 52 people. Highlights were a float trip down the Mississippi River and a fish fry at the Norway Beach picnic pavilion. 

Trip to the ER: 
Thursday, August 7, the same day as the Mississippi River float, I fell backward - tripped up by a trailer hitch - while helping my brother-in-law, Rick Baird, load a canoe. The next day it was apparent that something was not right with my back.  Barb, Charles and I took a trip to the Bemidji Hospital ER where it was determined I had a compressed fracture of the 4th vertebrae. The treatment plan included pain killers, a muscle relaxer, rest and the advice to see my primary care doctor after we returned to Akron which we did. 

I hoped to add more photos from vacation but am struggling with laptop in bed and web network issues.
This is Owen and his young life gives great hopel Love him dearly.

Another trip to the ER:
Sunday, August 17 Barb took me to the ER in Ephrata which is about 3 miles from our house because I was suffering severe belly pain such that it was making breathing difficult. We learned that I was bleeding internally. It was determined that the source of the bleeding was lesions in his duodenum. Most likely caused by using naproxen to relieve the pain caused by the compressed fracture. The ER Drs. admitted him to the IMCU (Immediate Care Unit) to treat the infection and replace lost blood.  In the process a blood infection was discovered which has been identified as an E-Coli bacteria likely generated by a plugged biliary stent which was installed a 2 1/2 years ago to aid in digestion after the cancer diagnosis. 

4 days in the Ephrata Community Hospital -  The list of problems that need to be solved is growing. We are grateful for the thorough and collaborative approach by the doctors here. The bleeding ulcers are resolved for now. The next step is to resolve the issue with the infection likely from the stent. On Thursday, August 21 it was agreed that he would transfer to the Milton Hershey Medical Center for that procedure. I rode in a transfer ambulance while Barb drove over after stopping at home to pack some things for the night.

Hershey Medical -  It's Friday August, 22 around 11:00 am. Hershey is a teaching hospital which means that I have been poked, prodded and questioned by dozens of people. 

I wish I had a video to share of the attending doc giving the drill to the shaking nervous wreck of a resident. Poor guy. I felt sorry for him. :It was like a scene from "House". "Review the patients problems" The resident start to speak but with too much history for the attending doc; "Next problem?" he barked. "And how are we going to fix these problems?" he quizzed. Meanwhle about another 5 residents are standing around. It was a most fascinating scene.

I  had endoscopic surgery at 1 pm. We have yet to hear from the docs regarding the "success" of the procedure. But I assume no news means no serious problems.

I 'm sorry for the long blog break but the broken back pain and all the resulting issues have been a larger dose of the REAL than I wanted to or could DEAL with. We are working to "knock down" each problem "in order" to help me back to a more complete recovery.

1. Stop the bleeding ulcers - DONE

2. Clear out the e coli infection - NEARLY COMPLETE (I think)

3. Manage my swollen "porky pig" legs (embolism)

4. Deal with the threat of chronic lower leg clots coming up into my lungs

5. Manage pain from my broken vertebrae

6. Regain strength and mobility

7. Fight the cancer

As always, I appreciate your prayers of support.

Ricky

Snapshots

Owen Putnam Schrag, posing with his mom, Annie and dada, Adam. He is a good time.

It's time to post those photos I promised from my Fabulous Father's Day Weekend and give you an update on what condition my condition is in.

Our whole family was together and enjoyed a few outings in the grass and spent most of the time enjoying our time together with our focus on our son/grandson, Owen, who is so precious.

Owen, 9 months old, and his hairless, saggy- and wrinkle-skinned grandpa getting acquainted.
His dad, Adam, and uncle Charles have hair all over their heads so I was an new and interesting relic for him to see.

Blogger seems to require some text between photos or it won't place them where I want. Typical new technology not letting me be in control. I like being in control - not the technology. Don't get me started about my feelings toward the audio center (formerly known as the radio) in our new car. I find it most unfriendly, but maybe better than one in a Dodge we rented once. Oh, and the temp control system (formerly known as the heater and air conditioner). That has a mind of its own too!!!

Here we are on a cool Sat. eve taking in a concert at Music in the Orchard at Hans Herr House in Willow Creek. L-R, son Charles, his friend and ours Anna, mommy Annie, Owen enjoying the grass. Grandpa and Grandbee (I think his maternal grandmother is Grandcee [Cathy]) sitting in back. Owen likes the outdoors and didn't mind the cool evening compared the scorching summer heat in his hometown of Fresno, California.

I didn't take any pictures while family was here and am glad other family members shared these with me so I can post them here.

Owen listens to Daryl Snider on guitar and Frances Miller on violin as they entertain the orchard crowd. Frances is married to Charles's friend Tim Sauder who went to Canadian Mennonite University the same year Charles did.

I will intersperse my cancer stuff as text to separate the photos and keep you up-to-date. It seems google blogger is now requiring at least two lines of text to separate photos. I don't get it!?!?!

Owen interacting with Charles's friend Anna Harrington. Thanks for joining us Anna! That was a special treat.

I am in the middle of chemo by infusion (Abraxane) and oral (Xeloda). I definitely am feeling their effects. Hand and feet are numb. I worked 8 hours today and came home shelled. I fielded some ugly phone calls and they took their toll on me. I plan to reduce my work time to a more reasonable shift length starting later this week.

Tomorrow morning Barb is taking me to Hershey for blood work at 7:30 am and chemo at 8 am. That's as early as I've every gone. I generally takes about 3.5-4 hours for an infusion. Thursday I go back for the $9000 Neulasta injection to promote white blood count.

Owen and Grandbee Barb sloppy kissing. This at a picnic in Long's Park in Lancaster City

For my fellow pancreatic cancer readers, my blood tumor marker shot up —which can be cause for concern. It went from 265 to 425 over a two-week period. I am curious what it will be this week with all this poison going through my body.

Owen likes the outdoors and water, both strong Baird traits. He really enjoyed this swing time.

My endoscopic procedure to obtain larger amounts of tumor tissue failed. The plan was to send the tumor tissue (cancer cells) to a lab for extensive molecular analysis to determine more about their makeup and then determine what treatment will be most effective against them. The doctor said when he tried to pierce the tumor with the needle to get tissue it basically pushed against a hard fibrous mass and failed to collect the tissue. The tumor has largely necrotized (died). But Dr. Yee was quick to add that it is not benign or safe to ignore. I guess I wasn't pinning large hopes to this process, so the fact that it failed hasn't been a big disappointment.

Mommy Annie caught this great moment between dada and little Owen on our couch. Both happy. Me too.

We don't have any major plans July 4 but look forward to the day off. I should have taken a photo of Barb's box garden. We have been enjoying three kinds of fresh lettuce and radishes. You just can't do better than garden-fresh lettuce. Maybe I will include a pic in a future post.

Owen sitting on the car console next to Grandpa Ricky as together they learn the RAV4 features and controls.

That's it for now. Owen is pretty dang cute, eh? He's also charming and personable. These will not be last photos of him you'll see here. Barb and I look forward to a Baird family reunion in Cass Lake, MN, with a spur trip to visit my family in SoDak the end of July and early August.

Best to everyone

Ricky

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