It's no news that the internet can be a wonderful tool for learning about new things, and, for anyone wanting to get a quick answer to some bit of trivia or help their kid with geography homework, it's indispensable. But when you're trying to learn about serious medical issues, it can become a minefield of opinion and misinformation. In the first several weeks after Kelly's diagnosis in February 2012, we were constantly overwhelmed with information from caregivers as well as well-meaning (and often helpful) friends and family members concerning everything from treatment options and their side-effects to diet and exercise. Prognosis was unclear, and it was always hard to get anyone to talk about life-expectancy in a straightforward manner - everyone wanted to remain "optimistic." At times like these, Google and Wikipedia are not very helpful. There's no dearth of uninformed opinion online, and what often sounds authoritative is often countered elsewhere by no less official sounding "experts."
I'm not even sure how I first ran across www.pancan.org, but the Pancreatic Cancer Action Network was the first place I found that cut through all the fog and delivered the most straightforward information about the battle we would face for the next several months. We learned about Folfirinox and its side-effects, as well as a host of remedies to attenuate them. We were able to better understand the realistic life-expectancy, thus understanding the "bargains" we were making in terms of quality and quantity of life. We read survivor stories, many with similar diagnoses. When chronic pain became an issue, we learned about different ways to deal with it, in some cases gaining the confidence to suggest to our doctor alternatives he hadn't before considered. Whenever wasting became an issue due to loss of appetite, we learned about dietary supplements and foods that could more efficiently assist with weight retention/gain.
In the spring, whenever we realized we were running out of conventional treatment options, we contacted PanCAN and requested their "patient and liaison services (PALS)," and in short order were contacted by our own personal PALS representative who began the process of matching Kelly's diagnosis with ongoing and upcoming clinical trials nationwide. In our case, while we qualified for a few different promising trials, we simply ran out of time.
Nothing can replace the comfort of God's grace in our lives, but there is little doubt in my mind that His grace is made manifest in many ways that we don't often consider. Sometimes it's that feeling of being accompanied by him as we pray, sometimes it's the vast network of saints - friends and family - at work in our lives. But sometimes it comes to us in ways we don't at all acknowledge as His work, like being able to go online and find the answers, or in some cases just figuring out the right questions to ask. Like being able to find the best treatment options available anywhere in the world. Like being able to connect through story with other patients or grieving loved ones left behind. Like knowing that there are millions of people worldwide dedicating their time and money to knowing, fighting, and curing this disease.
Please support PanCAN today and join Team Kelly in the DFW Purplestride Event on Saturday November 9. For details on the event and how you can donate or volunteer, visit
DFW PurpleStride. We'd love for you to honor Kelly's memory, or that of another cherished loved one lost to or currently fighting this disease.
For more information about the Pancreatic Cancer Action Network, visit www.pancan.org.
God Bless and "Fight Like Kel!"
-Jason
