Stomach Cancer Symptoms That Took The Life Of My Brother, Ivin Berneil Lee
In January of 2016, my brother, Berneil, started noticing that he couldn’t eat as much as he used to. He felt full sooner.
In February, he went to his doctor for heartburn and acid reflux problems.
March, April, and May were yucky… poor appetite, sensitive to spicy foods, persistent indigestion, and stomach pain. Below is a picture of Berneil at his mom and dad’s 50th Wedding Anniversary reception, May 20, 2016. Pictured with favorite Turley Aunties, left to right: Helen Skinner, Berneil Lee, Genene Stradling, and Barbra Smith.
June and July was more of the same, but now back pain in the middle of the back, making it hard to commute back and forth to work, 1 hour each way. Doctor and chiropractor visits. More prescriptions.
August was just continuously feeling worse. Stopped by the Emergency Room in Show Low and diagnosed with severe GERD. X-rays show gas in bowels, but nothing else. Given more prescriptions. Had to wait several weeks for authorization from insurance for CT scan. Primary Care Physician thinks may be an ulcer.
September. Sick, sick, sick. Stomach pain, back pain, difficulty keeping anything down. September 28, 2016, second trip to the Emergency Room in Show Low on his way to work.
- Threw up violently 4 times in the night and looked like it had blood in it.
- CT scan showed fluid in abdominal cavity.
- Doctor did paracentesis to drain fluid and analyze it. 3.1 fluid liters drained.
- Sent home and told results would be given to his primary care physician.
- Also, given a referral to a surgeon to schedule an endoscopy and colonoscopy.
- Being told possible writhed hernia or gastroparesis.
Berneil’s Last Month — All Symptoms Are In Play and the Cancer Is Aggressive
October 5, 2016 – received diagnosis of cancer. Because if was found in the fluid of the abdominal cavity, it had metastasized, and was now Stage 4.
October 6, 2016 – endoscopy and colonoscopy at Summit Health Center in Show Low. Couldn’t hardly keep the magnesium citrate down to cleanse the colon. Just drinking anything made him nauseous.
- Summary: ulcerated esophagus (from throwing up)
- Stomach tumor biopsy taken.
- Colon tumor biopsy taken.
October 7, 2016 – starts staying at my parent’s house. They had a single bed that elevates. Having a hard time getting comfortable. In pain. Hungry… but nauseous. Ice chips become the only thing palpable and hydrating.
October 13, 2016 – CT scan done. Showed more fluid in abdominal cavity. Miserable and hungry. Went to Sonic in Show Low. Battery on his car died. Threw up everything he ate and drank. Couldn’t handle the stress and took off walking, leaving dad alone at Sonic. Dad called nephew, Dirk Lee, to come help look for Berneil. Found Berneil, bought and installed a new battery. Later that afternoon, Berneil and his dad met with the cancer doctor, Snehal Thakker, to talk about options. Given less than 6 mos to live.
October 17, 2016 – surgery to put in a chemo port and a feeding tube. Surgeon took a good look at the stomach while inserting the feeding tube and said there were metastasized cancers all over the stomach and it was the worst he had ever seen. Trying to make arrangements for Home Health Care to meet with Kyra to teach her how to feed Berneil and care for the j-tube. But they only service a 50-mile radius and Joseph City is 62 miles away. Berneil stops in and visits and hugs his Show Low MVD family. He loves them very much.
October 19, 2016 – Berneil, his sister Kyra, and her husband, Darrel, travel to Show Low to meet with the cancer doctor, Snehal Thakker. Since the surgeon who put the chemo port and feeding tube in saw that there were metastasized cancers all over his stomach, Thakkar said the next step would be to start chemo to help keep the cancer in check and possibly allow Berneil to eat. Only gives Berneil 4 months to live now. Kyra makes the determination to have Berneil stay at her house. Preferred Healthcare in Show Low will deliver a hospital bed with pull-up bar. Max gives up his bedroom and boxes us all of his stuff and puts it in storage. The family paints the room for Berneil and has Dish Network install the “Hopper” in his room so he can watch TV anytime day or night.
October 20, 2016 – Berneil meets Home Health Care at cousin, Leann Turley’s home in Woodruff, to learn how to operate the j-tube. Berneil’s dad takes him on up to Show Low to spend time at the MVD office with his co-workers, who were his second family. The only thing on Berneil’s “Bucket List” is to get a professional pedicure. So, the office plans a “Pedi-Party” for next Thursday, October 27, after work in Show Low.
That evening, Berneil has difficulty getting his feeding tube to work. Family friend and nurse, Jeanie Downs, comes over to help.
October 21, 2016 – Berneil still having difficulty with the feeding tube. Stuff that he puts into the tube… and which should go straight to the small intestines… is being vomited back up. Jeanie’s husband, Sandy (also a nurse), comes to help. Gives Berneil 2 suppositories. Feces coming out through the j-tube. Sandy takes Berneil to the Show Low emergency room and they wait 6 hours to see the surgeon who put the j-tube in and he verifies that it was inserted right. They do another paracentesis and drain 5 liters of fluid.
October 22, 23, 2016 – Over the weekend, Kyra goes over to her parent’s home every 6 hours to put Ensure supplements and pain medicine into the j-tube. Still having issues with feces coming up through the tube. Berneil in a lot of pain. Pain meds aren’t enough. Waiting on insurance to authorize more. Since it’s the weekend, no doctors are available to help. The on-call number is a national answering service that isn’t helpful.
October 23, 2016 – Berneil tells Kyra that he couldn’t sleep last night and was on his knees by the bed rocking back and forth, moaning in pain, when dad came in. He had heard Berneil’s moans and knelt down beside him and put his arm around him. He asked if he could rub Berneil’s back for him and did so for over an hour. Then Berneil finally got back in bed and dad stayed with him and rubbed his feet. Berneil said he felt so much love and relief from his dad and that it was a very tender time. He cried and cried and told his dad how sorry he was for holding harsh feelings against him when he was growing up. A burden is lifted. A relationship is healed.
October 24, 2016 – Ironically enough, Berneil has to get a dental bridge installed. He had a temporary bridge installed 30 days ago, but once he starts chemo, he won’t be able to have any dental work done. So, Dr. Jason Lyman and staff, make quick work of getting it installed and treating him like a king. Then, dad drives him to Snowflake Urgent Care to seek answers for his feeding tube, since no doctors are calling him back. Everything is supposedly fine.
Bed delivered and TV hooked up. Berneil spends the first night at Kyra’s. He’s excited… we call it a slumber party.
October 25, 2016 – First (attempted) day of chemo in Show Low. Berneil can hardly walk into the cancer center. Very tired. Nurse gets him into a wheelchair and hauls him off to start chemo treatment. But, I stop her and explain that we are having trouble with the feeding tube not working, feces coming back through it, dried blood in all of his vomit, etc., she says she better talk to the doctor first. An hour and a half later, the doctor comes in and says chemo is no longer an option and tells us that Hospice will take over from there. Hospice nurse, Annie Murphy, stops by and introduces herself. She becomes a beloved friend. She gathers all the prescriptions to get them filled. Annie recommends Berneil take a Lorazapam to help him sleep.
Berneil gives Kyra a blessing of comfort and peace. Kyra felt the room open up and the presence of many generations of priesthood holders giving the blessing. She was told to eat healthy and that the Lord would speak to her of things she needed to do through the scriptures, so to read them often.
Visitor: Alan Palmer, Winslow Stake President
October 26, 2016 – Berneil wakes up groggy and loopy. Wants hot chocolate. His muscles are getting weaker he’s clumsy walking and getting around. He can’t think or focus well. His amazing memory is finally starting to cut out. He falls asleep every 30 minutes or so. Huge difference from yesterday. Annie brings liquid Morphine for the pain. Lance takes him over to his house to get passwords for internet accounts and Berneil stops in and visits his mom and hugs her goodbye.
- Julie Davis and Becky Hunt, bring hot chocolate and needed groceries
- Laurynn Snodgrass, Berneil’s supervisor from the Prescott Motor Vehicle Division
- Vicki Palmer brings a quick chicken soup mix and visits
- Monica ? from the dental office stops in and wishes him well
- Dan Bushman, Home Teacher, offers his services in any way possible
October 27, 2016 –
- Berneil fell out of bed early in the morning. Nephews, Max and Lance, help him back into bed. Seeing Berneil’s condition and feeling terrible that he fell out of bed and couldn’t hear him ringing the cow bell for help was very traumatic for Lance, who shut down and crawled back into bed.
- Bo and Kay and family leave Washington early in the morning to come to Joseph City.
- Berneil can’t stand, no muscle strength. Been throwing up straight blood since midnight. Annie come and checks his vitals… can’t get a reading for pulse or blood pressure.
- Berneil feels urgent need to pass a bowel movement. We haul him to the bathroom several times. Nothing happens.
- Dad brings over a portable toilet to put by the bed. Dad tells him he’s there and Berneil comes to out of the fog and looks at my dad and says, “I love you daddy. You’re a great man with a good heart.” The last words he ever says. It meant the world to my dad.
- My dad then leaves to go home and get his hearing aids. Meanwhile, Berneil needs to pass a bowel movement again. Annie and I get him on the toilet, but his muscles completely give out and we can’t get him situated in the bed again. He’s upside down and on top of Kyra. Kyra gets out from under him and he throws up blood all over the bed. Kyra calls Berneil’s home teacher, Dan Bushman, to help move him. Dan is at work but sends his Dad, Virgil Jr, and brother, Larry, right over. We change the sheets and get Berneil moved to recline just right. Annie leaves.
- Kyra lets the Show Low Motor Vehicle Office know that he won’t be able to attend the “Pedi-Party.” Beverly Kissling and Dora Frost come rub Berneil’s feet with essential oils in lieu of a professional pedicure.
- Then dad comes back and Annie leaves to check on other patients. Dad and I sit there with him and talk and pray and watch the clock and give him pain meds every 30 minutes. Berneil moans a lot. Shannon comes home from work at lunch and starts playing the piano quietly to hopefully soothe Berneil’s pain. 12:40pm Berneil passes away while Shannon is playing the song, “Come Unto Christ.” It is the song she sang at his baptism. Kyra and his dad are at his side with his dad holding his hand. He has a peaceful look on his face.
- Hospice Chaplain, Ezra Borrego, is close by and comes to be with the family until the mortuary arrives. Ezra’s love and wisdom shared make a deep connection with the family. He becomes a good friend.. Annie comes to confirm death and notes 1:30pm as time of death.
- Dad, Darrel, Lance, and Max haul Berneil out of the room on a board to the gurney. Dad salutes him as he is loaded into the van. We watch the van drive away as far as we can see.
- Bev Kissling and Dora Frost, essential oils foot rub
- Bary and Sharon Petersen
- Rich and Linda Miller, apple pie
- Katie Wenger, cancer care basket
Berneil’s last picture taken with Show Low MVD co-worker and friend, Hazel Cambern, 10/20/16.
Why wasn’t the stomach cancer detected earlier and Berneil’s pain better managed? Less than 30 days after the diagnosis, Berneil is gone. The only conclusion I can come to is that the symptoms came one by one. Maybe it was the combination of symptoms that made it diagnosable by doctors. I wasn’t with Berneil at his doctor and emergency room visits. Maybe he was only focusing on the symptom at hand, i.e. bad acid reflux, nauseous and throwing up. Regardless, the cancer was aggressive and he passed away fast. Berneil lost 85 pounds in one month!!! This is a blessing for the family knowing that he didn’t have to suffer any longer and he is in peace with family and friends who have already passed on..
- No symptom should be ignored. Take time to think about what’s going on with your body and write everything down. Make doctor visits and get things taken care of as soon as possible.
- Take time for friends and loved ones. You never know when the last time you see someone will be the last time.
- Visitors, texts, and phone calls were extremely appreciated by Berneil. He loved the concern and care of other people. It made him feel loved and valuable.
Love and miss you Berneil. I’m proud of your courageous efforts in fighting this horrible disease!