Last year we had representation from 16 states and participated in over 70 congressional meetings. We asked for stomach cancer to be included in the Department of Defense's Peer Reviewed Cancer Research Program (PRCRP), where it would compete through a peer-reviewed process for research funding. There are a limited number of cancers eligible for this program, and stomach cancer was never on the list. Due in large part to the work of DDF and the volunteers who participated in last year's Advocacy Day, stomach cancer was included as eligible for funding under the PRCRP in Fiscal Year 2015. This is a significant milestone for stomach cancer, which has had a hard time competing for research funding at the National Cancer Institute against other cancers that already have more foundational research.
It was great seeing positive results from last year's effort. I wrote about how I initially wasn't sure if I wanted to participate again, because it was pretty hard the first year. But I think I handled it much better last year, especially having been through it once before and knowing what to expect. And these young foundations definitely need lots of continued support. I probably should have posted this weeks ago, but please contact DDF if you'd like to help us. Even if you're reading this after the Advocacy Day has taken place, or if you can't join us in DC, there is always the opportunity to call or email your representatives. DDF will help you and tell you what to say, so it's not as scary as it sounds!
In addition to participating in the Advocacy Day, I also spoke during two congressional briefings last year. The first was the day after Advocacy Day last February, where I sat on a panel alongside Debbie and some top researchers, including Dr. Ajani from MD Anderson. The second was in June, at a briefing hosted by the Deadliest Cancer Coalition in cooperation with the new Congressional Caucus on Deadliest Cancers. Representatives Lance (NJ) and Eshoo (CA) opened the remarks and said it was the first time they had ever seen a room so crowded for a briefing like this.
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| Congressman Leonard Lance, Dr. Anil Rustgi, and me |
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| Standing room only |
I went last. These can be tough to do because I tend to get really emotional when someone asks me to talk to a group about Meg's cancer. I still prefer to focus on the good memories when possible, but I'm glad that I spoke. The audience for these meetings seem to include a lot of young staffers, and I think it's good to present a personal story that they might be able to relate to. So we played the video that DDF made in 2013 (posted at the end of the entry two below this one). And then this is what I said:
The interview for that video was filmed last May, exactly 2 months after I lost my wife Megan to gastro-esophageal cancer. In May 2012, just one year before that, cancer was the last thing on our minds. We had been together since our first year of college at UVA, had just entered our 30’s, and like lots of married couples around that age, we were ready to start a family. So we were spending a lot of time talking about our future, making plans that would impact the rest of our lives. Then one Wednesday night in June, after a softball game with some of our friends, Meg said she just didn’t feel right and suddenly got really upset. She wasn’t sure why she felt so tired during the game and got out of breath so quickly. The next day, she noticed that her abdomen felt swollen. Three days later, we went to the hospital, and that quickly, everything changed...
Being told that your 31-year-old wife has cancer is pretty tough to wrap your head around. Being told that it’s stage 4 because tumors have spread from her stomach to all over her liver, and then figuring out what that actually means, is beyond any emotion that I could actually describe. I wanted to help her fight and beat it, like the other young cancer survivors that we’d known. But then the doctors bluntly said that there was no cure for this type of cancer, that she was going to be on palliative chemotherapy for the rest of her life, and that they had no way of knowing if the rest of her life was going to be any more than a few weeks. And just like that, all that planning for the future didn’t matter anymore. All I wanted was as much time as we could get, and all she wanted was hope that someday she could live a normal life again.
I mentioned in the video that Meg had a really good response to the initial line of chemo. And she did. The primary tumor in her stomach went away, and she was actually able to get to the point where she felt pretty good every other week, when she didn’t have to get chemo. But the metastases in her liver never went away. So we figured ok, that first line of chemo helped – she’s doing better now, and she’s in better condition to really fight. Let’s go find the cutting edge treatment and knock out the rest of the tumors. So we went to Georgetown, we went to Sloan-Kettering, we went to Hopkins. All of the doctors said her scans looked amazing, considering how advanced the cancer was at the time of her diagnosis. But in the same breath, they also said it was very unlikely that the chemo she was on would get rid of all of the tumors in her liver. On top of that, (and here’s the part that we just couldn’t understand) – they said there wasn’t anything else they had to offer that they had reason to believe would do any better. One doctor actually said it would be unethical for him to change her primary chemo drug, as long as it was keeping the existing tumors in check for the time being. We weren’t satisfied with the concept of just “keeping the tumors in check”, we wanted to get rid of them, but these top hospitals were telling us that there was nothing out there that they felt confident could do that.
Two weeks ago I attended a funeral service for my great Aunt, who battled leukemia. She was put on an experimental drug over 20 years ago, and that drug gave her and her children and grandchildren years of love and happy memories. At the service her son spoke, and he talked about how grateful she was for that time, and how she said that every day had been a gift.
I got nine additional months with Meg after her diagnosis. And while that time was extremely tough for all of us, I’m so thankful for those nine months, because we were able to have some beautiful moments. This past August, Meg’s uncle (a non-blood relative) was diagnosed with pancreatic cancer. He passed away less than 5 weeks later. Without obvious warnings signs or established screening methods, these cancers are just being found too late, too often.
Towards the end, Meg told me that she didn’t have any regrets; she just wished that we had more time together. While she was fighting, all she wanted was hope. Hope that someone could survive stage 4 stomach cancer. Hope that the tumors would go away. Hope that we could someday live a normal life again, and live it for decades, not months or a few years. I don’t think a prognosis of a few months is good enough for anyone, and when you’re 31, it’s pretty much incomprehensible. When you’re fighting terminal cancer, you cling to any semblance of hope that you can find.
And where can you find hope? You find it in survivors who live to tell their stories. And you find it in promising clinical trials and cutting-edge research. And right now, there just isn’t enough of that for these gastrointestinal cancers and other poor-prognosis cancers. Megan never lost hope, even after we were told that we were out of options. We need the treatment options to match the hope and strength that the people fighting this disease demonstrate every day. Which is why it is so critical that we increase the research funding levels for these cancers. It’s been shown that an increase in research funding strongly correlates to increases in survival rates. Research equals survival. Research equals hope.
