Quick (late) Update
Today I went through training for talking to congressional legislators. As part of advocacy days, we are going to ask our legislators to co-sponsor the Pancreatic Cancer Research and Education Act (which, among other things, mandates that the National Cancer Institute develop a strategic plan for addressing pancreatic cancer. As I have said here before, the statistics are startling:
In just sheer numbers, pancreatic cancer is the 10th most common cancer in the US. It is the 4th leading cause of cancer-related death, and it has the lowest survival rate (6%) of all the deadly cancers. We were shown graphs illustrating the amount of funding for a particular type of cancer and then the related survival rates; there is a direct, positive correlation between the amount of funding the government puts toward research on cancer and the associated survival rate (at least for the top 5 deadly cancers).
I have some understanding of what to expect and have been coached on how to counter arguments why a particular legislator cannot support the bill. For better or worse, I head to the Hill tomorrow and, I have to say, I’m excited. I really feel like being an advocate in this way may help make a difference.
On the flip side, I went through a whole host of unexpected emotions today. I met several people who are 5, 8, 10, 12 years survivors and I wondered, “What right do I have to be in this group — I’m only a 2-year survivor?” I realize this is completely irrational, but there was a time today where I really questioned if I could be useful at this event. I got over that by the end of the day, but I was very surprised at my response.
I’ll write more tomorrow (or Wednesday), but for the time being, here is a picture of the survivors at the training (there were about 480 people total at the training — the vast majority were there because they had lost someone to the disease).
Have a great evening (all 4 minutes left of it).
Merle
Merle-
Thinking of you and hoping that you got good news. We are all here for support.
merle:
i followed your blog all last year up until my dad passed away in march of 2009, after his 4.5 month battle with the disease. i’m 24, and losing him was so awful then that i just couldn’t talk about it that much. i actually was at the advocacy day in DC last week as well – finally feeling ready to do something proactive and engage with others who’d been through similar things or were going through similar things. i just typed in the ‘p.c. research and education act’ into my google search and your website was the first thing that popped up in reference to it – i must say, i was so pleased to see a recent update on your blog, as i honestly didn’t know how you were doing since i last checked it over a year ago. do NOT belittle the fact that you are a 2 year survivor – the woman at our table from IL in DC, Rosalyn, was 83 and 1.5 year survivor, and the rest of us were all just in awe, because none of us had our family members experience even that much time. anyways, now i’m rambling, but i was nervous as heck first getting to DC for this (went by myself to represent my family), but at the end of the time there i felt empowered from speaking with the congressmen/their staffs, as well as meeting others who were as passionate. merle, i’m so glad to hear you are still doing well, and thank you for going to DC to advocate!
-keRi