The Cancer Issue

I've briefly mentioned it a couple times that a person close to me is possibly dying of pancreatic cancer. I say "possibly" because he has not yet been properly diagnosed, which is just another frustration piled on the stress of losing someone.

Here's the story.

He, I'll call him "Sam," lives in my home. He has an Acquired Brain Injury from living for years with epilepsy. He has had thousands of seizures and has been knocked unconscious and suffered amnesia from them too. His sister, "Rose," who I also live with, is his caregiver. She has had him living in her home for 7 or 8 years.

When Sam first started living with Rose, he had a lot of anger problems. He had actually had them for years. Through a lot of really hard work by both Rose and Sam and a dedicated nurse practitioner, Sam has been the happiest and healthiest he has ever been for the past couple of years. Rose and Sam learned how to communicate and resolve conflicts. Sam has had his independence which he greatly values and he has been treated with dignity. He participates in a lot of programs such as an Acquired Brain Injury group, an adult literacy program and church activities for people with mental disabilities.

Sam began inexplicably losing weight this year and his nurse practitioner determined to find out why. A CT scan was scheduled about three weeks ago. The results showed a tumor on his pancreas. The next day I went with Rose to an appointment with the nurse practitioner to go over the findings and what the next steps would be. We noticed Sam was a little jaundiced. And he mentioned that his urine was "black and red," so a sample was taken. It looked like tea.

The CT scan was on a Wednesday and on Sunday Sam was in the emergency room. Those anger issues resurfaced and he had gone into a rage. He had gotten angry earlier in the week too and now looking back, we can see that his behaviour had been subtly changing for quite a while. Rose had been in fear of her life, Sam had gotten so angry.

Sam was admitted to hospital and more CT scans were done to see if the cancer had spread to other parts of his body. And finally on the Friday he had an ERCP (endoscopic retrograde cholangiopancreatography) during which the surgeon put a stent in his common bile duct because it had been almost completely closed by the tumor and the surgeon took some scrapings of the tumor for pathology.

So many doctors and other health care professionals were involved and every one had a different opinion. All of them talked about the tumor as if it was a done deal that it was malignant. The gastroenterologist said there was no way it was benign, but we also found out that an oncologist won't even look at a patient until a sample has positively identified cancer cells. We are still waiting on pathology...... It has been over a week.

Pancreatic cancer is really nasty. It's one of the most aggressive forms of cancer and a psychiatrist has informed us that it usually greatly contributes to changes in mood and behaviour like we had already seen. The prognosis is really bad. So far, Sam could be dead by the end of the year or he could still live for a year. There is so much unknown at the moment.

This is a nightmare.

I've never had anyone close to me die.

Sam and I get along really well. We go to different events together sometimes. He invited me to his work's Christmas banquet last year and I went to the ABI strawberry social. When I was in the psychiatric hospital this summer he came to visit me. What is funny about that is he didn't let me know he was coming, so I had gone for a walk in the trails around the hospital. He waited for almost an hour for me to get back to the ward before deciding to leave. A nurse transcribed a letter he left for me. In it he said we were like brother and sister. Very sweet.

This "anticipatory" grief is hard. Compounded with Sam's impending death are all the problems and complications with health care professionals and the unanswered questions. It's overwhelming.

So there you have it. Almost everything I know about Sam and his tumor. More to come about this I'm sure.