By Laura Metzger
My journey began eight years ago. I experienced an acute epigastric episode of diarrhea and vomiting for eight hours. It was a red flag. I had just returned home from New York City where I was taking a dog grooming class via a commuter bus. I made a dinner with bowtie pasta, bacon bits with two glasses of red wine. Soon after eating, my husband and I were invited to visit our neighbors. That was when I got incredibly ill, so much so that I could not go to get my husband for help. By morning, I seemed okay again, and I went about my day. I thought maybe it was simply food poisoning, so I never went to the hospital or even to my doctor.
I had a previous history of acid reflux and Zantac use, but after this acute episode, things changed. I developed more symptoms starting with steady burping when I lay down at night. Things progressed with constipation, high cholesterol, hypothyroidism, bloating, hair loss, wheezing and intermittent symptoms were added to the list of fatigue, excessive thirst, back pain (sometimes crippling), itching, a bulging rectocele, and more abnormal labs, including a high BUN for eight years and other abnormal bloodwork. I had an abnormal EKG, I had four abdominal ultra-sounds where my pancreas was obscured, three by gas and one by an incomplete sonographic window (another red flag). I had one CT without contrast of the abdomen and one MRI in a low resolution, 1.5 Tesla scanner. I had other tests, including a blood test for Rocky Mountain Spotted Fever, a rare disease which was negative. I had four CA-125 tests that came in high. My blood sugar levels were also coming in higher than normal.
My general practitioner in Fairfax, Virginia thought that the CA-125 was caused by possible ovarian cancer. The additional scans of that area did not correlate with that notion, although one gynecologist urged me to have a prophylactic oophorectomy along with a hysterectomy. Another consult with a gastroenterologist at a prestigious university hospital in Baltimore suggested I get another gynecologist to see if they would agree to that surgery. He also told me to keep eating popcorn and continue taking a baby colic ease that allowed me to sleep at night through the burping. He seemed comfortable with the fact that he could not come up with a diagnosis. I had seen one of his understudies, whom he thought highly of, in Fairfax, Virginia.
I visited eight gastroenterologists in total, three general practitioners along with two gynecologists and a few other specialists. At no time did any of these doctors mention the word “pancreas.” During the last several years, I had been traveling out to California to help my son who had some gallbladder issues and some financial difficulties. I even drove a car cross country for him, and then drove cross county with my husband in late 2019 to relocate here. It was not until COVID hit in March of 2020 that I had additional symptoms of itching in my shoulder blade, vague stomach pains, fatigue, and bright yellow urine that I realized it was time to see a doctor again. Honestly, I had given up on ever finding out what was wrong with me as so many doctors failed to identify the root cause of my symptoms.
During my crisis, there were two more missed diagnostic opportunities here in California. The first was while visiting a walk-in minute clinic. I was sent home with Cipro and then I started itching like crazy. The next day, I visited an urgent care where I was told I had “big bilirubin” while they took some blood. The next morning, my husband and I reviewed the bloodwork but in haste I missed the third page, my husband found my liver enzymes were extremely high along with a note from the doctor who said come back in for a scan, nothing serious. We went back to the urgent care, but because of COVID, I was redirected to the front door. There were lots of doors and I turned to my husband and said, “Let’s go to the ER, why are we here?” and so we did. Within 20 minutes at the UCLA emergency room in Santa Monica, I had the ‘Aha’ moment. My mystery illness suddenly had a name – pancreatic adenocarcinoma (PDAC). My official diagnosis was adenocarcinoma in the head of the pancreas with a nearly complete blocked bile duct requiring emergency surgery.
Positioned logistically in a perfect place in LA, my healthcare was about to be addressed by some of the most highly skilled doctors in the world. My blocked bile duct was corrected, while I awaited possible curative surgery. My Whipple was done at HOAG Medical Center in Newport Beach by Dr. Marie Stapfer who has done approximately 1,200 Whipples. I cannot imagine what could have happened had I been on one of my cross-country trips when this occurred.
I have since written a book that is soon to be published with a medical timeline of my abnormalities, failed tests, and abnormal bloodwork. I am currently under the care of a wonderful oncologist, Dr. Sidharth Anand at UCLA. I am on an oral chemotherapy and have had a good response. I hope to learn more about how I can help others who suffer from digestive disorders, others who may have been on Zantac, as well as helping other gastroenterologists and general practitioners who can learn from my years of living with acute and chronic pancreatitis that was accompanied by pancreatic cancer.
Nearly all my symptoms have been alleviated or cured by the Whipple and the chemotherapy. I look forward to a meaningful and full life, although some doctors believe my prognosis is not hopeful. Some have put a limit on my time here, which I wish they had not done. I will continue to fight with every cell in my body to stay healthy, to be a productive human, publishing my book and spreading the word that pancreatic cancer is not always “The Silent Killer”! It has a bad reputation, but I believe the silence is due to the failure of our medical system. Studying patients like me will shine a light where protocols and biomarkers are recognized and followed so no one else falls through the cracks like I did. And may all the doctors learn from Centers of Excellence like UCLA medical center and Hoag Medical Center where they fix our broken pieces and make us whole again. God made sure that I was in the right place at the right time.
Until pancreatic cancer has a medically generated symptom checker, I invite other patients to use mine. Ask questions, talk to your doctor about your pancreas take advantage of this easy to remember acronym I’ve create for pancreas. This disease is not always the silent killer!
Pancreatitis (chronic or acute)
Abnormal Labs (glucose A1c, BUN, cholesterol, thyroid function, amylase, lipase)
Nerve Pain (in the back or radiating to other parts of the body)
Constipation (or other stool changes)
Reflux (acid) or Recurrent Metabolic Issues
Etiology (undetermined) or Exocrine insufficiency
Added late signs (itching, jaundice, changes to urine color, fatigue, vague stomach pain or back pain)
Stomach and/or digestive difficulties (bloating, acid reflux, burping, digestive trouble, unexplained weight loss)