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