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ANNE from Canada

Last April, I came to this board like so many people - confused, afraid, just desperate to find out some information from real people who have PC. My father had started to turn yellow, and while we thought he might have hepatitis, we were shocked to discover that he had PC and a tumour covering his bile duct. I will never forget the doctor telling Mom, Dad and I that the prognosis for Pancreatic Cancer was grim. What I read in the next few days confirmed our worst fears. I came to this site, posted a brief message, and a few kind souls took the time to wish me well and tell me to read everything I could. And I did. He was booked for a Whipple on the 10th of May 2004. We knew the stats - less than 10% of the people are eligible. But, a wonderful surgeon took his time and 'peeled' the tumour away from Dad's portal vein. He seemed to be in good shape and we were hopeful for progress.

However, six weeks later (yes, SIX weeks) the pathology report came back stating that Dad had widespread perineural involvement, postive resection margins and 1 of 14 lymph nodes involved. The surgeon told us that had he known these would be the results he would likely not have performed the surgery. He didn't think chemo was an option - the local protocol was to not follow resectable tumours with chemo or radiation.

I had read all the things that people on this board were saying about the treatment they received after their Whipples, and told my family about them. We asked for and got a referral to the local Cancer Centre. They don't really see that many resected tumours there (with usually less than eight Whipples performed in Newfoundland in a year). I came back here again, learning from all of you about Gemzar, 5FU, the debate about whether you should have radiation . . and so on. We decided on a course of treatment with 5FU. That was in July. Dad began treatment, and even at the age of 69 he was otherwise so healthy that he bought an old house and went about renovating it for 'something to do' while he went through chemo.

In December, after 5 months of chemo, there was more bad news. The CT showed two tumours on Dad's liver, about 1.6 and 2cm respectively. We were told at that time that things had now changed to a palliative situation, and that dad would be switched to Gemzar. It was devastating. And I came back here again . . and learned so much from all of you about medicine, about advocacy and research, about faith, and most of all about courage.

I didn't post very often, finding the words hard to come by. I tired to carry on with my day to day life, as my whole family did. We had a quiet Christmas, finding all the reasons to celebrate but hard to find the joy. Dad continued to work on the house, getting down to the details. I think he felt the need to hurry. I read lots of information about drugs, combined treatments, quack treatments, diet and nutrition. It was exhausting, trying to make sense of all of it, trying to find something that isn't really there (a miricle cure). And, without fail, I would come back to this board and someone would have said something that was encouraging, either because they had a success or that they were finding some peace in all the hurt. Still, I didn't say much. I don't know if I was being lazy, or selfish, but I didn't know where to start.

On Friday, Dad went for his CT scan. The last one had been hard on all of us, and we were all in dread of what this one might say. His appointment with the oncologist was today, and we were both pretty nervous as we waited to hear the results. We sat there this morning, and I said to him before the doctor walked in 'Dad, whatever the results say, you know that you are doing your part to fight this.' I wanted to give him credit for never complaining, never giving up, and never, not once, saying Why Me?

The doctor seemed surprised and delighted with Dad's report. Both the tumours on his liver had shrunk to less than .8 cm, half their size of three months ago. The rest was clear - no additional mets and the two liver spots were responding well to the Gemzar. His weight was stable, his blood levels good. This was not the cure, but it sure felt like a miricle today! Dad's response: ' I guess I better get another house!'

And so, tonight I have the words. Everyone has their own story here, but we all share a new understanding of what progress means. Sometimes, it's not about getting better, it's just not getting worse. Somedays, you find out that your father's tumours are shrinking. Sometimes, having a day when you feel like eating is progress. Somedays, it's putting new windows in a house. And some days, just knowing that there is a wonderful group of people you've never met who will post a line or two to you when you just have nowhere else to go can make all the difference.

To anyone who is reading this - here's the only piece of advice I can give you after 11 months: Never Give Up. Accept what you need to accept, but you owe it to yourself or to whoever you love that has brought you to this place to find out what you can, pray to whoever you pray to, ask a LOT of questions and learn from others.

I know Dad's war with PC is going to be rough, but it's nice to win a battle every now and then. You have all helped me so much- thank you.

Posted 03/08/2005 12:11 pm by Anne from Canada
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