My father was diagnosed with pancreatic cancer Jan. 25, 2013, at 78. In good health, though always battling some kind of joint issue (he’s had nine joint replacements, two thumb reconstructions and both back and neck surgeries but still keeping up with my mom and all of us), he had been fortunate enough to avoid any major health issues until his diagnosis.
His nurses call him “bionic.”
A Navy veteran of 22 years, retired at the rank of Commander, and now fully retired since 2010 after 22 years at the Indiana State Department of Health, he stays active by taking long walks, riding a stationary bike, training with weights and often jogging in the pool to avoid too much impact to his joints. He spends his time taking care of the house, keeping up with his three married children and four grandchildren, and working on his stamp collection.
What follows is a timeline of my dad’s fight against pancreatic cancer from presentation through treatment. I hope it is informative and provides hope to at least one person out there. None of us knew what to expect – and not knowing is extremely difficult.
December 2012/January 2013 – Dad noticed his appetite, including his taste for alcohol, decreased, and he experienced some lower back pain. Pretty common stuff for a 78-year-old man. With his history of various joint pain, none of us (including him) really thought anything of it. He also complained of an uncomfortable full feeling after eating at Buca di Beppo. (Who doesn’t?)
In retrospect, one giveaway could have been the total loss of taste for alcohol, including his daily glass of red wine. But that’s the nature of pancreatic cancer – the symptoms that present themselves early enough to catch it are generic and easily written off as something else.
Jan. 23, 2013 – My dad noticed his urine turned a strange dark color and decided to watch it.
Jan. 24 – In the morning he told my mom he had to call the doctor due to the dark urine persisting. Concerned, but certainly not thinking about “the C word,” my dad called his family doctor who worked him in that afternoon.
The internist noticed Dad also had a slight yellowing in the corner of his eyes. Neither of my parents saw this earlier. He ordered blood work that afternoon.
Jan. 25 – Early the next morning the doctor called to tell Dad he had an appointment for a CAT scan a little before noon, and they feared a malignancy. Dad called Mom just as she walked into her office. She turned around and went home to take him to the hospital.
At 3:30 p.m., the doctor called my parents with the results. Dad had a tumor in the head of the pancreas. The doctor encouraged them slightly by saying he had it in the best place – if he had to have it.
The first tests showed no signs of metastasis or portal vein involvement. Further tests revealed that the tumor might be surgically resectable. There was light, after all.
Unfortunately, I had been essentially sequestered on my ship for the previous two weeks and almost completely out of contact with my parents, save for a few emails. When I started receiving “Please call” emails with no other word, I wondered if they were just concerned they hadn’t heard much from me in a while. When I turned my phone on and saw texts from Mom as well as my sisters, I knew something was up, but cancer or a serious medical situation involving one of them never truly entered my mind. Like so many of us, I had been completely wrapped up in my own little world at work, solving the various problems that presented, and sneaking in sleep when I could.
When I heard my mom’s voice on my voice mail, I knew something was wrong, but it didn’t register until I spoke to them – at 2 a.m. their time.
Mom told me that Dad had pancreatic cancer.
I said, “OK,” still unsure of what that really meant. I asked what the prognosis was.
It finally hit me when my mom told me that the survival rate was “5 to 20 percent.” Stunned, my jaw literally dropped.
All I could say was: ”What?”
She repeated herself, and again all I could say was “OK.” I’m not sure what else she told me in that conversation. .
Feb. 3 – My mom, having called many people but obviously unable to tell everyone in person, sent the first of many mass email updates to dozens of people. In it she outlines the series of events from the previous nine days: - After meeting with the original surgeon, they scheduled surgery for the Whipple procedure Feb. 11 after the surgeon returned from vacation.
The Mayo Clinic describes the operation: The goal of the Whipple procedure (pancreatoduodenectomy) is to remove the head of the pancreas, where most tumors occur. Because the pancreas is so integrated with other organs, the surgeon must also remove the first part of small intestine (duodenum), the gallbladder, the end of the common bile duct and sometimes a portion of the stomach. In the reconstruction phase of the operation, the intestine, bile duct and remaining portion of the pancreas are reconnected.
This vacation delay allowed my sister, a doctor of physical therapy in Miami, to contact colleagues about pancreatic cancer specialists.
In the meantime, a stent was placed in my dad’s bile duct to relieve the blockage that caused his jaundice and discolored urine (the giveaways for his tumor).
The recommendation from Miami to Mass. General in Boston came a day later and led to the subsequent meeting with Dr. Michael House, a Harvard Medical School graduate; former intern, resident, and fellow at Johns Hopkins; and a fellow at Memorial Sloan-Kettering Cancer Center. As the story goes, this pancreatic cancer specialist and surgical oncologist performs more Whipples in a month than most surgical gastroenterologists do in a year. It’s his “thing.” And oh, by the way, he practices at Simon Cancer Center at IU Medical Center in Indianapolis – less than 30 minutes from my parent’s house.
In the end, Dr. House and the oncology team decided on a chemotherapy regimen prior to surgery. Dad would start with four treatments over eight weeks. At that point, they would decide whether to pursue further chemotherapy, begin radiation or go ahead with the Whipple.
Feb. 8 – A CAT scan showed more portal vein involvement than originally thought. The plan remained an aggressive “three-drug cocktail” for eight weeks, then a re-evaluation in April.
Feb. 12 – My dad started his chemotherapy regimen. The first week he learned about its nasty symptoms including sensitivity to cold, nausea and flu-like symptoms. Overall his energy level started to decline, but slowly. This first week of treatment, he spiked a temperature. Advised by the doctors that any infection while on chemotherapy is bad news, my parents visited the ER. It turned out that the stent placed in his bile duct had become blocked. Once they replaced the stent, he was good to go!
Over the course of the next eight weeks, Dad received four more treatments. His symptoms remained the same, but his energy dipped. Ever the fighter, he remained as active as possible, with he and my mom making a trip to visit friends in South Carolina.
I got to visit with my family in late March and saw Dad for the first time since his diagnosis. It was great spending time with the family, in spite of the circumstances! During this trip, I got my first “DEKESTRONG” bracelets. Dad saved several for my wife and me. His grandchildren called my dad “Deke” for more than a decade. As usual, a grandchild created the name when she couldn’t pronounce “Gramps.”
April 3 – The second CAT scan showed no shrinkage in the tumor. More importantly, it appeared the tumor had not spread or grown. (Roughly 50 percent of patients show no shrinkage after the first round of chemotherapy). After the scan, the plan changed to four more rounds of the aggressive chemotherapy. While my mom and dad hoped for shrinkage and surgery at this point, they were optimistic with the “neutral” news that is better than some alternatives! I have been continuously amazed at the spirit both of my parents showed throughout this entire time!
And as my sister said, this is a German tumor and therefore exceptionally stubborn.
Over the period of treatment, my family learned a lot of little tricks to alleviate some of my dad’s symptoms during chemotherapy:
May 1 – I again got to visit with my dad. Unfortunately, he spiked a fever similar to his first week of chemo, and most of our visit took place in the hospital. We did not envision spending our time this way – we had some plans for dining and hanging out – but we ended up spending more time together (and with mom) in that single room. I wouldn’t have traded that time for being anywhere else!
Again, the stent was blocked. Again, a new stent alleviated the problem. This was just before Week 7 of his chemotherapy. The doctors believed the chemotherapy was working, and a scan in two weeks would show whether surgery was the next step.
“SHRINK, damn it!” became the phrase of the day. (Leave out the “damn it” in your prayers.)
May 29 (My dad’s 79th birthday!) – Dad had an appointment for a detailed CAT scan to determine the next step – surgery, more chemotherapy or radiation.
May 31 – The scan showed the tumor appeared resectable. The tumor board met four days later to agree to a surgery date where my dad would undergo his Whipple procedure.
June 5 – My parents met with the doctors after the board meeting the previous day. The latest scan showed the tumor had shrunk a little, and surgery was scheduled for June 20 (at 7:30 a.m. with arrival at 5:30. Go figure! It turned out we needed every bit of that time!).
After four months of chemotherapy and stress, needles, pills, and side effects, Dad waited for a surgery that could allow him to be one of the lucky 5 to 20 percent of victims to overcome it. The surgery would end up being exploratory to start to determine if, in fact, the tumor was resectable. The scans did not show the complete extent of the portal vein involvement. If the tumor wraps its nasty little tendrils around the vein, there’s nothing the surgeon can do except close my dad up after removing what they can. So, we did not know for sure what would happen.
Fortunately, the Navy worked with me, and I was able to cancel a trip to Europe to fly in on the morning of my dad’s surgery and be there with my entire family. I arrived in time to see my dad for about an hour before he went into surgery, which was a great relief for my family and me. The next 10 hours we waited. We camped out in the surgical waiting area longer than anyone else that day, awaiting the news.
This page captures the timeline of my dad’s on-going fight against pancreatic cancer. From here you can read my various update posts to see how things have progressed since the inception of this blog in June.
June 20th – Surgery day. Read more here.
June 22nd – PurpleStride Indianapolis, and an update.
June 27th – Still in the hospital, where do we go from here?
July 8th – Still fighting through the post-surgical digestive complications and learning to live with insulin-dependent diabetes. Read more.
July 16th – Dad is home!
September 2013 - My family founds the John A. Braeckel Family Fund for Pancreatic Cancer Research.
October 22nd – Maybe my parents’ most important anniversary yet.
November 8th - Dad “rings out”, completing his grueling eight-week radiation regimen.
December 11th – “Cancer-Free!”
May 29th, 2014 – Dad turns 80 with a little Birthday Thanksgiving!