First symptoms late April and early May
Near the end of April, 2019, I began to feel pain in my abdomen below my stomach. During the long Golden Week holidays the pain increased. On May 8th I felt pretty bad after I got home from work in Kyoto, so on Thursday, May 9th, I visited my local doctor. He noticed that I had jaundice, so he referred me to a hospital here in Ritto City. He said it could be caused by either hepatitis or by something blocking my bile d uct.
First Hospitalization 2019-05-10 to 2019-05-24
On May 10th I consulted Dr. Tanaka at the gastroenterology department of He did a quick ultrasound scan of my abdomen and said that a small mass on my duodenum was blocking my bile duct. At that point I was quite ill, and he had me hospitalized immediately. As soon as I saw the ultrasound image, I suspected that I had cancer. Although Dr. Tanaka said it could be an infection, I sensed that he agreed with me.
Over a two-week period I received treatment for jaundice and abdominal pain, and doctors conducted three endoscopic procedures to improve my bile flow and determine the nature of the mass on my duodenum. I also had a CT scan (dynamic) and multiple blood tests.
- Endoscope 2019-05-10. ERCP stent install failed, so bile duct cut to allow flow
- CT scan (dynamic) 2019-05-13
- Endoscope (ERCP) stent successfully installed 2019-05-14
- Missed class at KNDU 2019-05-15
- Saturday night at home 2019-05-18, back to hospital next evening
- Endoscope ERCP tissue sample collected 2019-05-20
- Missed class at KNDU 2019-05-22
I was released from the hospital on 2019-05-24. In that 2-week period I lost 12 kg (74.7 to 62.7).
I spent one night in the hospital for endoscopic fine needle aspiration (FNAS). This test found cancer cells.
Outpatient colonoscopy 2019-06-17
Painful colonoscopy discovered a very large polyp about 20 cm up from my rectum. Surgical removal would be required.
Cancer diagnosis 2019-06-17
Cancer diagnosis confirmed by biopsy of cells sampled with FNAS (Fine Needle Aspiration …) on June 3rd.
PET scan at Kusatsu General Hospital 2019-06-24
Aya and I drove to Kusatsu General Hospital on June 24. I spent the entire morning getting a PET scan. The scan revealed that my tumor was isolated at the end of my pancreas, with no signs of cancer in other locations.
Second Hospitalization 2019-06-27 to 2019-07-04
On June 27th I entered hospital for removal of a colon polyp. This had to be done before I could undergo surgery to remove the tumor on my pancreas. The first attempt on June 27th failed, and the second attempt on June 28th succeeded. The polyp had cancerous cells but not near the colon wall. Also, I had an MRI scan on June 28th.
On July 4th I met with Aya and the chief surgeon, Dr Masuyama. Surgery was scheduled for July 24th.
Pre-surgical tests and interviews 2019-07-10
Outpatient meetings and tests
- Blood test
- Ultrasound of heart
- Ultrasound of blood vessels in legs
- Lung power tests
- Diabetes consultation (result of jaundice? – I have diabetes)
- Consulted Dr. Eguchi about colon polyp removal on June 28. No signs of cancer remain, follow-up on 2020-02-17.
- Dentist cleaning and inspection
- Final consultation with Dr. Masuyama about surgery
Third Hospitalization 2019-07-22 to 2019-08-14
On July 22nd, 2019, I was admitted to the hospital in preparation for surgery on July 24. I walked to the hospital from home, about half an hour in light rain. I had a CT scan (dynamic) on July 22. On July 23 the hospital dentist made molds for a mouthpiece needed for general anesthesia during surgery.
I walked into the operating room at 8:00 a.m. I had to answer some questions about my identity and my understanding of the procedure about to begin. The surgery, a pancreaticoduodenectomy (Whipple procedure (Japanese: 膵頭十二指腸切除術) took nine hours to remove my duodenum and gall bladder, 50% of my pancreas, and 20% of my stomach.
Recovery in hospital 2019-07-24 to 2019-08-14
After surgery I awoke in the ICU, a bright and noisy place, connected to many tubes and wires. One of the tubes was a pain medication pump that injected medicine directly into my spinal column.
I don’t remember too much pain, but I was delirious some of the time. To pass the time, I played back real and mediated events in my imagination. I was able to control the images by opening my eyes; however, I could not get my imagination to slow down and focus on particular content. I could see parts of many movies. Somehow I filled in parts that I did not remember.
In a single recovery room back on the ninth floor, my hallucinations included groups of strangers in my room. Apparently I had created a “viral tweet” inviting visitors! When I closed my eyes, groups of three or four strangers materialized near my bed. I was amazed that they could get into the room. When I opened my eyes, they vanished and the room appeared as normal.
A day or so after I was moved back into a four-man room, the hallucinations disappeared completely. I think that coincided with the removal of the pain medication pump and tube in my spinal column, but I cannot remember clearly. Since then I have been unable to conjure up images of movies or of groups of people in my room.
My normal cheerful spirit disappeared for several days after surgery, but after about post-op day 5 I began to return to normal. I remained hampered by various tubes until post-op day 8 or 9.
For a while some pain remained at the site of my feeding tube, which had to remain in place for a while until doctors were sure I could get enough nutrition by eating. Pain often appeared early in the morning, around 4 or 5 a.m., while I was trying to sleep.
By August 13th pain had mostly dissipated, but scarred area was irritable and standing was uncomfortable. I weighed 58 kg, with a BMI under 20.
On August 14, 2019, I was released and went home by taxi.
Post-surgical lab results
Lab results following surgery showed cancer more advanced than we had previously thought.
- Stage IIB (not IB)
- Length 28mm (not 20)
- Lymph nodes: malignant cells in 5 of 41 removed and sampled
- Duodenum was involved
- Chemotherapy 6-month course recommended
- Outpatient at Gastroenterology Department and Tehara Clinic (for blood glucose control)
- Take time to heal.
- Clean feeding tube daily with vinegar in water (1:9). Reuse a 25ml syringe.
- Blood glucose can be controlled with medication; no need for insulin or monitoring.
- Eat three (more?) meals per day, following nutritionist’s advice (high protein, low carbohydrate diet)
- Take protein supplement drink each night
- Exercise gently, walking, cycling, resistance band exercises. Do not strain or overheat.
- Aim to gain weight up to about 65-68 Kg eventually.
Setback and hospitalization December 26 to 30
I began to experience an intestinal blockage and pain on December 19th. The pain increased until December 26th, when I was finally able to see my doctor. After blood tests and a CT scan my doctor said that I had inflammation and a lot of gas in my intestines. I was immediately hospitalized, and I began to receive an IV drip for nutrition, antibiotics for the inflammation, and pain medication. After four nights in the hospital, I was released and given medications for pain and blood glucose control. When I left, I weighed less than 55 Kg. On December 18 I had weighed 60 Kg. This setback erased the gains I had made from mid-August.
Status at the end of 2019
The CT scan on December 26 showed tissue that the doctor said was probably cancerous. A laparoscopic exam will be necessary to determine the existence and extent of cancer. On January 6, 2020, I will have blood tests and a dynamic CT scan. On January 7, 2020, I will meet my doctor and a surgeon to plan for hospitalization for a laparoscopic examination.
The future is very uncertain. Depending on the type and extent of cancer presently in my body, there is a strong possibility that I may become very ill early in 2020. I hope not, but I think it is wiser to be realistic rather than overly optimistic. In the meantime I will continue to eat well, try to gain weight and strength, enjoy social activities, and get outdoors as often as I can.