This is my brother Donnie's story.
Donnie died from pancreatic cancer on January 12, 2008 at the age of 48. He had been diagnosed with pancreatic cancer in October 2007. He lived for only 3 months after the diagnosis of pancreatic cancer was made.
What makes Donnie's story so unbearable is the fact that he started having pain in his abdomen and lower back in 1994. At that time Donnie was living in Ontario and started to be investigated there. He came home to PEI in 2002, as he was feeling increasingly unsure of his health. He told the doctors about his pain and weight loss and was immediately put on anti-depressants. The pain continued and got worse and he was put on Vioxx and higher doses of anti-depressants. He did get referred to two other physicians and he had a colonoscopy and an endoscopy done in 2004 but they did not reveal anything. Donnie was referred to a doctor in Moncton, NB, Canada in March of 2007. Here, he was told that his pain was 'emotional', not physical. No tests were done or ordered. He was advised to seek counselling, to stop chewing gum, avoid fatty foods, stop smoking, and try acupuncture. The doctor reassured him of the benignancy of his condition.
Donnie returned home, devastated and distressed about the diagnosis. He continued to push himself to go to work. Donnie worked at the Charlottetown Driving Park as a waiter. He worked so hard, up and down flights of stairs carrying trays of food and dishes even though walking was increasingly difficult. Donnie spent most his off time in bed, cut off from family and life in general. Donnie tried so many things to help himself. He tried healing touch therapy, neuro modulation therapy in Riverview, NB, he went to a counsellor to work on his 'emotional pain', and he tried many dietary and nutritional changes as well. Donnie tried so hard last summer to get himself better, it is pitiful to remember. He was found, on more than one occassion at his home in the depths of despair over his ever worsening pain and physical deterioration. We, his family were so worried and confused. I live with the knowledge that I let him down. I was not there for him. I mistakenly or niavely believed that the doctors were trying to do the right thing. We encouraged Donnie to continue pushing for help from his doctor and to ask for tests to be done, nothing was done. Donnie went to the ER twice last summer and both times was sent away with a prescription. Finally, Donnie could work no more. He was now bent over at the waist constantly, with his hands on the floor, as this was the only position that he could tolerate. He goes again to his doctor and basically begs for a CT scan. The doctor surprisingly orders one at his request, but still feels it is unnecessary. The doctor mentions the effects of depression and how they can cause pain. The doctor still believes it is all in Donnie's head. At this appointment Donnie weighed less than 120lbs. Donnie waits for the CT for several weeks, spending his days now with my parents because he is afraid to be alone. He knows that he is dying and tells my father this.
October 4th, 2007 Donnie is told that he has cancer. The cancer is in the lymph nodes, the liver, the lungs, the pelvic bones and the tail of the pancreas. Donnie is given Oxycontin and goes home with my sister to tell my parents.
The next three months is an ordeal that I am still trying to come to grips with. I still cannot believe all that Donnie suffered. I never knew that a human being could have pain like that. I totally believed that there would be something to ease Donnie's pain, but there wasn't. He suffered everyday.
I went home for Thanksgiving after being told about Donnie's diagnosis. When I got to Donnie's house he was in bed in pain. The Oxycontin was not working. I took him to the hospital and this time I was not leaving until they helped Donnie. I took him from his home and he never returned.
Donnie was finally admitted to the hospital. They kept increasing the Oxycontin and added Morphine every hour as needed along with a list of other drugs, but nothing got on top of his pain. Chemotherapy was ordered. Donnie had one round of Gemcitabine and then came the news that his cancer was not Adenocarcinoma but a neuro endocrine tumor of the pancreas. This a rare form of pancreatic cancer and these tumors are very slow-growing. Donnie' s chemo was changed to Streptozotocin and Doxorubicin. He had one treatment of this. It was decided just before his second treatment that chemotherapy was not helping and in fact could do more harm than good. Treatment was stopped. It was now just palliative care that was required.
We managed to get Donnie into the Palliative Care Unit in Charlottetown. We were so happy to go there and so was Donnie. We were hopeful that here he would get the pain under control. His medications were changed and tinkered with constantly. Donnie was now on Methadone 3 times a day, a Versid pump, Buscopan, Sandostatatin, Sufentenol and Deladid every hour along with, Ativan, Lyrica and others that I cannot remember. His pain was constant. It was a constant ringing for help from Donnie's room. The nurses were wonderful. We, Donnie's family, were there everyday. We fed him, we looked after him, we watched him and tried to comfort him. That is all that we could do, just be there for him. My parents came everyday. They were overcome with grief and disbelief. It took a lot out of them as they are both in their 80's but they came relegiously and faithfully for Donnie.
This was Donnie's journey. The last five days that he was with us, he was in fact not really with us. His lungs were filling with fluid and he was given a drug to dry up the secretions. Donnie never talked to us again after this drug was started. He did not have a drink or a bite of food for the next five days. He left us quietly around midnight on January 12th 2008.
I miss him terribly. I miss chatting with him. I miss his big laugh. It is still so raw. I think it always will be. I just hope that he knows how much I love him. I hope and pray that Donnie is at peace and that he is smiling down on us. We love him so much.
The one thing that I take from this experience is that I will never wait for a doctor to order a test for me or someone in my family. I will be an advocate for private health care clinics, as they fill a void in our health care system. I have lost faith in the heath care that we are provided with and will be forever sceptical of doctors.
This is a piece of writing that we found on Donnie's desk and I am going to share it with you.
' This is the darkest time of my life, the suffering is beyond. God bless me, thy will be done. Let your angels help you. Help me my friends, please help me. Oh, Lord, take pity on this sad boy and help him.'
Lovingly remembered forever, Your Sister,
Lynn (Driscoll) Butler