My mom, Betty Cameron, had not been “well” for at least three years. Not really sick, but there had been many little issues that were all being treated separately, and none of them were responding to any of the treatments. In August of 2008, we finally got the diagnosis: Stage IV adenocarcinoma on the tail of her pancreas. The diagnosis came on August 11, 2008, just after Randy Pausch had lost his very public battle with pancreatic cancer.
While I didn’t know much else about it, I knew it was bad.
Mom lived 121 more days until December 10, 2008, but during that time we got NO information, nothing about what is was, what to expect, or what to do. Mom had decided that she didn’t want any chemo, so we called hospice. Those four months were all about taking care of Mom. Although I was in a panic that whole time, thinking there should be something that could be done, I didn’t know where to turn or what to do. I had posted a question about nutrition on a recipe website and a reply directed me to the Pancreatic Cancer Action Network website.
I had seen the website before, but I take most internet searches with a grain of salt, so I hadn’t given the pancan.org website the attention that I should have. I decided to take another look. I contacted PanCAN Patient Services through an email and was connected to three other caregivers. Unfortunately, I lost my mom a week after this contact with PanCAN Patient Services was made, so I didn’t get to use the services as I should have.
In the aftermath of losing my mom, I was angry, in disbelief, and still searching for the answers that had eluded us for those months. I had already been in discussions with headquarters and they had proposed I take on the role of Community Representative, but I didn’t think I could devote to the role like I would need to, so I was wavering.
Right around that time, I had a discussion with a medical professional that administers some genetic tests. I asked her if there was any genetic test on the horizon for pancreatic cancer. Her unforgettable response to me was “pancreatic cancer is so rare that no research even needs to be done”. I went home and signed the papers that night to become the Community Representative for Springfield, MO.
It is evident that so much work needs to be done to educate the medical community as well as the general population. So, whatever I can do is more than has been done up to this point. I am very humbled by this role. I wish it wasn’t even necessary. I couldn’t help my mom, but maybe because of her, someone else will be helped. If there are days when I think it’s too much, I then think this is nothing compared to dying of pancreatic cancer and that keeps me moving forward.