Let me begin by saying it’s a miracle that I am alive today. This is my 4-year Anniversary!
Pancreatic cancer is notorious for its high mortality rate. It is often not detected until patients are an advanced Stage 4, with few warning symptoms. It is an extremely aggressive cancer with many poor treatment outcomes, few treatment choices, and only recently emerging major research.
I am a writer and a Holistic psychotherapist. I have documented my cancer journey through posts, articles, and videos. (See my profile)
In many ways, I have been blessed to become an “investigative reporter” about the experience of being a Pancreatic cancer patient. Theoretical knowledge is one thing, being IN THE EXPERIENCE is a whole new level of knowledge and learning!
I pray this article might serve to educate, enlighten, encourage and support those touched by this disease.
PHASE 1 – Diagnosis and First Treatment
Early Cluster of Symptoms: strange taste in my mouth, reflux, abdominal bloating, constipation, rapid loss of 10 pounds, feeling that “there is something wrong in my body.” I sought an explanation of these symptoms with 2 Internists and a Gastroenterologist – refusing to be dismissed when physical exam and bloodwork were “normal.”
Preliminary diagnosis achieved by Gastroenterologist ordering an Endoscopy with Ultrasound and CT scan. Definitive diagnosis achieved via a Distal Pancreatectomy surgery that removed 40% of my pancreas, my entire spleen, and 8 lymph nodes. Confirmed by surgical pathology report – Stage 1, Pancreatic Adenocarcinoma in the tail of my Pancreas.
EMOTIONAL EXPERIENCE:
It was very strange to be thrust into this new world of Pancreatic cancer – the medical system, the tests and scans, consultations, clinic visits, surgery, the shock of the diagnosis. It all happened so quickly. At this point, I had no fear and believed my surgeon when he said, “The cancer is gone but I am recommending chemotherapy as an “insurance policy” that the cancer doesn’t come back.”
I was pressured to begin chemotherapy 3 weeks after surgery. I said, “No. I will take another month to give my body time to heal and recover from the major surgery.”
Phase 2: Chemotherapy
My Oncologist put me on Gemsar – a relatively mild chemotherapy given through an IV catheter in my arms. The plan was 12 infusions given once a week.
The reality was that the first infusion at standard dose completely wiped out my immune cells. I had to have shots of Zarzio for 2 days to encourage my bone marrow to produce more immune cells. The following week, the second infusion was aborted because when the IV catheter was inserted, it caused a severe thrombophlebitis in my arm.
Subsequently, my Oncologist reduced my dose. After 3 more infusions, my veins began to shut down. I asked my Oncologist to let me have a week off between infusions to allow my veins to recover. I declined to have a port or a pic line. Later, I asked for 2 weeks off, then 3 weeks. I only had 8 infusions, as I had developed blood clots in both lungs. I was on Eliquis for a year to dissolve the blood clots.
The good part of chemo was that I never had nausea or pain and my CA19-9 Pancreatic marker stayed in the normal 20 range, my CT scans were clear of tumors, and the only side effect I had was weight loss and thin brittle hair.
EMOTIONAL EXPERIENCE:
I was emotionally traumatized by having a toxic chemical injected into my body. It went against my belief system of Holistic health treatment, and it gave me life-threatening blood clots which were another level of trauma.
To make matters worse, my Oncologist and his NP were emotionally detached.
It took me a full year to emotionally recover. I felt weak, fragile, and wondered if I would die from this cancer?
Phase 3 – 33 1/2 Months Free of Any Detectable Cancer
I had surveillance CT and MRI scans of Chest, Abdomen, Pelvis and blood work every 3 months.
Phase 4 – Disillusionment
A CT scan ordered by my Pulmonary doctor found an “incidental” small metastatic tumor in the upper left quadrant of my liver. I was now Stage 4. I was heartbroken.
I found a new, empathetic Oncologist. He said, “The cancer was never gone. Some cells remained and migrated to your liver.” My CA19-9 pancreatic cancer marker rose to a high of 2,202!
Although the tumor board recommended systemic chemotherapy, radiation or surgery, I chose to have an Ablation of the tumor by an Interventional Radiologist. This had never used by my UCLA medical group, and they were doubtful. I proceeded with my decision.
An Ablation is an Out-patient procedure, less invasive, shorter recovery time, fewer side effects. CT guided imagery is used by the interventional Radiologist, who inserts 2 external probes into the liver through small incisions and releases radio-frequency heat to destroy the tumor.
My doctor and I moved the needle forward in terms of options for Pancreatic cancer patients! I had abdominal pain for 3 days then returned to my normal routines.
The results: My CA19-9 marker dropped to 275 within 3 weeks, then hit a new normal in the 50’s. CT and MRI scans every 3 months were clear of any visible cancer for 1 year.
EMOTIONAL EXPERIENCE:
A recurrence of cancer is a traumatic event. You realize the cancer never left your body despite 2 different treatment interventions and that it might kill you. I was badly shaken, fragile, and frightened. It took me 3 months to emotionally recover.
Phase 5 – More Disillusionment
In January – March of 2024, I experienced a string of major stressors – the biggest of which was the cancer deaths of two young people I loved. My nephew died of Stage 4 Melanoma at age 56 and my best girlfriend in the Pancreatic community died of Stage 4 Pancreatic cancer and septic shock at age 49.
I was with them on their death beds, and it shook me to the core. “If this happened to them, it could happen to me!” My reaction was so severe that it threw me into a 4-month CYCLE OF FEAR that I could not escape – despite using all my psychotherapeutic tools for handling anxiety and depression.
The FEAR was constant, relentless and it set up a physiological reaction of Fear/Flight/Immobilization – releasing constant adrenaline and stress cortisol into my blood stream, depressing my immune system, spiking inflammation, and probable cancer recurrence.
Phase 6 – More Cancer Recurrences
In May 2024, my CA19-9 cancer marker began an upward trend, even though 2 sets of MRI’s 2 months apart showed no visible signs of cancer. A PET/CT scan revealed a small liver tumor, a small tumor on the wall of my abdomen and a small “something” on my Left breast.
Phase 7 – Most Recent Treatment
On August 2, 2024, I had an ablation of the liver tumor and a cryoablation of my abdominal wall tumor. An MRI on September 5, 2024, showed no evidence of cancer in the liver or abdominal wall. A diagnostic mammogram and ultrasound for the breast took place on September 26, 2024. The report identified a 10 mm “something” and recommended a hallow core biopsy to gather further information. I go for my breast biopsy on October 8, 2024.
Impression: Pancreatic cancer is a very challenging, “wily-like-a-coyote” kind of cancer. It is unpredictable and very challenging to treat. I am fortunate that my Holistic approach to cancer recovery helps my body produce small tumors (10-11 mm) which we catch on scans every 2 months (MRI, CT, PET/CT). Overall, I am in “robust health” despite the cancer – my only medication is the Pancreatic digestive
enzyme CREON, all my organs are intact and functioning well, my blood work is good (except for a current rising CA19-9), I am strong in body, mind, emotions and spirit. I do not have any pain or other symptoms. I also receive acupuncture.
There is an emotional challenge to these recurrences that requires working through the shock, sadness, disappointment, fear of the unknown, yet they are “just another day at the office” for me. I NO LONGER FEAR my cancer. I meet with my specialists, examine the data, and move forward.
I am grateful to have the support of my health team, my family and my LinkedIn followers and visitors. God’s Spirit leads me, and I am covered in His Grace.
(Visit my website: www.HolisticCancerRecoveryHub.com)
I send Love and Prayers to cancer patients and their families around the world.
WE ARE STRONGER TOGETHER!
PRAYING FOR EACH OTHER IMPROVES TREATMENT OUTCOMES