If you’re reading this letter, you’re among the many people who have loved and supported our family this year. Thank you! Your kindness matters.
Yellow Eyes
Wednesday morning, March 24, 2021. Bob climbed into his car, headed for work. Cindi leaned in for a kiss.
Bob's eyes were yellow.
Bob's doctor explained, via phone, “Yellowing may be a liver issue. Go to the Emergency Room.”
Cindi had noticed a change in the hue of Bob’s skin a few weeks prior. They went for an 8 mile walk and the tinge lessened. No one was concerned.
Bob was a night owl who required little sleep. Where Cindi's preferred lights out was 9pm, Bob never ventured upstairs (from his home office) before 2am. He began heading to bed earlier and earlier – until he was laying down before Cindi had pulled back her covers.
Bob started waking in the middle of the night to pee. Which wasn’t usual.
His stomach ached. His urine was a strange color. His BMs were oddly pale. He’d lost weight. He itched. Persistent, painful, never satisfied. His skin was mottled with scratch marks.
Bob didn't complain: Cindi learned all of this in the ER. While waiting for the results of what would be the first CT scan of many, many more.
It seems there was a growth, protuberance, swelling, bump – tumor – on Bob’s pancreas.
Dr. J
Bob was admitted to the hospital from the ER. The next day, he had an Endoscopic Retrograde Cholangiopancreatography, or ERCP. In which a small camera was inserted down his throat, through the esophagus and into the stomach so it might peek at Bob’s pancreas, liver and ducts.
The doctor’s name was Sreeni S. Jonnalagada. But everyone called him “Dr. J.”
The growth on Bob’s pancreas was small but solid. It pressed on Bob’s pancreas which pushed against his liver duct and squeezed it shut. Bile backed up inside Bob’s liver causing his skin and eyes to yellow.
Alerting Bob and his doctors to the presence of a tumor.
Dr. J placed a wee stent into the duct and bile flowed. He inserted a tiny biopsy needle into the tumor.
For the next three days Bob felt great! Then the stent broke! Bob underwent a second ERCP in which Dr. J inserted a heavier, more durable sheath on top of the original.
The yellowing lessened. His discomfort dissipated. Tumor? What tumor?
Tell Me Where It Hurts
Bob lay in bed as teams of doctors, residents, interns, aides – their families and friends, people off the street, the guy manning the 7-11 - paraded through.
Every time Bob sneezed, a new specialty weighed in. Each specialty had a team. Choreographed to a tune known as “Hospital Time,” the room sporadically overflowed with groups of people from Nephrology, Hepatology, Hepatobiliary, Immunology, Gastroenterology, Infectious Disease, Radiology, Interventional Radiology, Endocrinology, PT, Internist and Hospitalist, nurses, cafeteria aide, coordinator, scheduler, The Maytag Man. “How are you feeling?” “Have you urinated today?” “What did you eat for breakfast?” “Does it hurt when I do this?”
Teams convened in Bob’s room whether Bob was asleep, sedated, in the bathroom or away for a procedure (ie, not in the room at all).
Cindi arrived at 6am and stayed until 8pm every day Bob was in the hospital. Covid restrictions at the time allowed only one visitor, one time per day. Which meant if Cindi left the hospital – to get clothes, pick up food or run home to turn off the coffee pot, for example - she couldn’t come back.
She'd sometimes trek along the hospital’s (inside) walking trail, grab a coffee in the cafeteria or play the chapel’s piano. Otherwise, Cindi stayed in Bob’s room. With Bob.
It is Cancer
Surgery was Bob’s Primary Team. Lee S. Cummings took Bob’s case that first day; he was an upbeat, outgoing, personable young man with lightly hued, corkscrew curls, a Caribbean accent and, always (except once when he made Cindi mad and she made him mad back) a big smile. He once re-sewed a wayward stitch in Bob’s incision while in Bob’s room. With a surgical needle and surgical thread.
Amazing.
Dr. Cummings is a busy liver transplant surgeon who specializes in the digestive renovation procedure known as the Whipple. He’s often on Kansas City tv and radio. He's been interviewed about how pandemic induced alcoholism affects the liver. He's appeared on the news to demonstrate robotic Whipple technique. A program featured a story about a gentleman whose life was saved thanks to Dr. Cummings’s transplant skills.
The upside to this infamy is that the notoriety is earned. Dr. Cummings knows his stuff. The Whipple is a lifesaving, only-option choice for people whose Pancreatic Cancer does not intersect with veins and has not metastasized to other parts of the body. It is a complex procedure that requires patience, skill and experience. Only 20% of those afflicted are eligible for a Whipple. Not all surgeons are qualified to perform it.
The downside is that, while he is well-intentioned, funny, kind and caring, Dr. Cummings is very busy. He performs liver transplants at all hours of the day and night, usually in emergency situations. He is not available on command – or sometimes by scheduled appointment either. Even when the situation seems dire to the patient.
Bob lay in bed. Six or seven residents, internists and aides stood behind Dr. Cummings. “It is cancer,” Dr. Cummings said, without preamble. He presented a paper. At the bottom of the page were the words:
Eligible for Whipple? Check yes or no.
“Yes” was checked.
Whipple?
Dr. Cummings’s eyes smiled over his pandemic mask. He nodded. “I do it well.”
Specialized Surgery
The Whipple is a body-changing, life-altering, only-option for Pancreatic Cancer Warriors who qualify. Those who are not eligible for the surgery undergo chemo and radiation in hopes of reducing the tumor’s size and/or position so that surgery might become possible. Where the cancer is found to have spread to other parts of the body, surgery is usually not an option.
The surgery is complex. Recovery? Oh-so-hard. Eating becomes a challenge. Tastes change. The stomach’s ability to hold food is marginalized. Intestines reject – and eject - nourishment.
The Whipple takes some – or all - of the pancreas. It changes the structure of a person’s digestive and excretory systems. In most cases, there follows a period in which the stomach does not work properly. Food sits. Or it’s expelled - up, down or (if there’s a G-tube involved and hopefully there is!) out. Until the body adapts to its new protocols, the only nutritional avenue is to have sustenance inserted into the lower intestine.
Typically, the first steps of digestion occur in the upper intestine, aka the duodenum. Here, food from the stomach is mixed with bile and pancreatic enzymes. Iron is absorbed. When a Whipple is performed, the duodenum is removed. It can become difficult to digest foods like fats. Individuals may require iron supplements and/or infusions.
The pancreas, what remains of it, if anything remains of it - also has some adjusting to do. Some patients help the pancreas by taking supplemental enzymes. Some also require insulin.
Eight months post-surgery, Bob takes one long-acting insulin shot/day, with occasional need for meal time correction (ie, more insulin before eating). His new engine doesn’t like fats, sugar, raw vegetables, high fiber foods, coffee or alcohol, and nutritional balance affects successful digestion. But generally speaking? These days? Bob can eat almost anything else.
Father’s Day Dinner, 2021, about 2 months post-surgery
Whipple Warrior
Bob’s Whipple was performed by Dr. Cummings and his team on Tuesday, April 20, 2021. Bob packed a bag and showered head to toe with pink, liquid antiseptic soap. Thunder rumbled as Bob and Cindi left home at 4:45am. Water shot from all directions and pelted the windshield. Billowing puddles tugged at the car's tires. The drive to the hospital was treacherous and slow.
A nurse commented, “I expect cancellations on mornings like this.”
Another nurse shook her head. “These surgeries are planned far in advance. People tend to figure it out.” She smiled.
Cindi replied without humor, “We would’ve crawled to the hospital naked in the snow. Uphill. Both ways.”
Bob’s surgery lasted more than 8 hours. When it was done, Dr. Cummings stood with Cindi in the waiting area. “We removed about 30% of his pancreas, his duodenum, ducts and gall bladder. His margins were clear but the tumor was closer to the main vein than expected. Eleven of the 22 lymph nodes collected tested positive. He will need chemotherapy.”
Cindi sobbed. Challenges ahead, check. But, bottom line? Bob would be okay.
Cindi's sister, Kay gave us the tee shirts: "Grow Through What You Go Through"
Missed Opportunity
Prior to Bob’s surgery date, Bob obtained agreement from Dr. Cummings to participate in Enhanced Recovery after Surgery (ERAS). In which the patient does not fast pre- or post- surgery. Instead, the patient consumes a specially formulated, high protein beverage to enhance his/her body’s ability to recover. Bob’s body would receive specialized nutrition immediately, not 2-5 days post-op as is typically ordered following major surgery.
Tube feeds would begin within a specified window while Bob was still in Intensive Care.
In preparation for surgery, Bob maintained weight while enjoying a balanced diet of healthy foods in excess of 4,000 calories/day. He drank the high protein ERAS beverage pre-surgery.
Post-surgery, not only were the drinks and tube feeds not available, neither was Dr. Cummings.
“He had something to do,” the Intensive Care Doctor said, cryptically. She raised her chin with authority and refused to elaborate.
After much persistent advocation, tube feeds were brought in for Bob. They were the wrong feeds. More advocation ensued, which included Bob and Cindi's daughter making phone calls from another state to someone sitting at a desk outside Bob’s room. Eventually the correct tube feed was supplied - but Bob had missed the ERAS window.
We’ll never know how or if the slow delivery of nutrition affected Bob’s surgical recovery. In the days that followed, Bob worked through the difficulties to eat and drink enough calories, especially proteins, so his body had the tools it needed (which included many medications) to heal.
Against the wishes of medical staff (doctors and nurses who wanted to stop tube feeds because that’s the way it’s always been done) Bob supplemented his diet with tube feeds for nearly 3 months, until he was consistently able to consume 2,000 calories/day.
Complications
Over the next few months, Bob was in the hospital eight times: for Palm Sunday, Easter, Cinco de Mayo, Mother’s Day and Memorial Day.
He was between hospital stays for his 36th wedding anniversary, Father’s Day, the 4th of July and his 62nd birthday.
He had two picc lines, a (J) feeding tube inserted into his intestine and a (G) Gastrointestinal tube inserted into his stomach. He had a total of four drains in his belly to allow surgical leakage out. He received tube feeds at home and in the hospital until he could consume enough calories to sustain his body.
Until all the tubes and drains were removed, Bob’s belly was a swollen mass of infected leakage from the various output sources. Red, sore, painful.
He had sepsis, fevers, a fistula, numerous infections, a leaky pancreas and thrombosis (clots) in the main, left and right veins in his liver. His body swelled with 25 pounds of edema (water weight). He received as many as 6 shots/day plus tube feeds and antibiotics input via picc line. There were two blood infusions for anemia, liquid infusions for dehydration and clogged drains requiring professional intervention. One abscess burst through his incision, left a hole and lead to another hospitalization.
Overcomer
Bob is a Stage III Pancreatic Cancer Whipple Warrior, due to the presence of those 11 positive lymph nodes. Chemotherapy began September 1, 2021, in which he receives a biweekly cocktail of chemicals collectively known as “Folfirinox.” Infusions take up to 6 hours to complete. After which, a pump drips more chemicals into his body over a period of 46 hours via a port surgically implanted in his chest. When the pump is removed two days later, Bob receives medication to help his body produce White Blood Cells (WBC), input by pump or shot.
Bob will undergo 12 cycles of Folfirinox. He expects to complete treatment in March 2022.
Bob returned to work part time, from home on September 20, 2021 with plans to resume full time hours once treatment is complete. He continues to receive daily insulin and eats a balanced diet that includes 80-100 oz of water and a minimum of 100oz of protein every day. He checks his blood sugar before meals but only rarely must correct with additional insulin.
Bob’s tumor marker tests currently show NED (No Evidence of Disease). We’re grateful! But not complacent. Pancreatic Cancer is fickle, cruel and offers no guarantees. Someone at Stage 1 could barrel into Stage 4 without warning while a Stage 4 Warrior may hold the evil at bay years later. Today, thanks to surgeons like our Doc Cummings, research, clinical trials and new treatments, it’s not unusual for Whipple Warriors – like Bob! – to battle forward 5-10-20+ years later.
We believe.
Fortune Cookie says: “You will overcome difficult times.”
(Great mustache! amiright?)