Roadblock!

Last May/June I wrote about going to Capitol Hill to advocate for stomach cancer awareness and research funding. In February we will be joining Debbie's Dream Foundation in DC again. I probably should have posted this a while ago, but anyone can participate. You can find more information here (or just call the foundation and ask about how you can help):

http://www.eventbrite.com/e/debbies-dream-foundation-curing-stomach-cancer-capitol-hill-advocacy-day-tickets-9559076455

I wasn't really sure whether or not I wanted to do this again. Last year was pretty tough, especially with it being just two months after we lost Meg. I'm putting a lot of effort into getting my life back on track, and I can't tell yet if participating in these advocacy events sets me back or helps me move forward. She's already in my head all the time, and I'd prefer to focus on the good times. There are certain triggers that really hit me hard, and many of them revolve around Meg's attitude through her treatment, the hope that she maintained in the face of overwhelming odds. I've talked about this before...

But here's a quick story. On March 14, 2013, just 4 days after her last blog post, we checked Meg into the hospital because her liver was failing. Her symptoms were getting really bad, but we still had hope that there was going to be another chemo option and that the tumors would start responding to the treatment. I was communicating over the phone with oncologists from Georgetown, Memorial-Sloan Kettering, and Johns Hopkins. One by one, they all started telling us there were no available treatments left. Our local oncologist came to visit her hospital room that afternoon and we had the talk that you never want to have. We understood what it meant, that they couldn't give her any more chemo unless her liver got better, and the likelihood of her liver getting better without chemo was beyond a longshot. In fact, they actually believed that the tumors in her stomach had likely come back, and that was causing the blood loss she was experiencing. The only way to confirm this would be through an endoscopy. Armed with our iPhones, we were all finding details on an unrelated endoscopic procedure that could be performed in some situations to address blood loss due to liver problems. So we really wanted an endoscopy. The gastroenterologist and oncologist told us no, that it was too risky in her condition. They went away, we cried and stressed, and asked for the GI doctor to come back. We told him we wanted him to do the procedure, and he agreed, but said that he had to tell us there was a legitimate chance that she wouldn't survive it. Meg didn't think twice about it, she wasn't ready to give in if there was any chance of finding something that could help. So they got us on the OR schedule for later that evening. When it was time, the physician's assistant came to wheel Meg down. She was in good spirits, probably handling it better than any of the rest of us there. She sat there in her Giants winter cap, energy sapped, dealing with pain, and she still had that smile on.

I followed the lady as she wheeled Meg's bed onto the elevator to head downstairs. Then there were a few hallways to navigate. We turned around a corner, and came upon a cleaning cart right in the middle of the aisle. The lady paused for a second, not sure what to do, and Meg said, "Uh oh! Roadblock!"

It might seem like such a minor thing now, but in that moment, it amazed me that she was able to make a joke like that. I think I laughed, but if I did, it was probably more a laugh of sadness and appreciation. I pulled out my phone and snapped a photo, because I wanted to remember the strength that she showed in that moment. On the day that she was told she was going to die soon, on the way to the procedure that might do it.

We got down into the OR and sat in a waiting room. I was freaking out, but trying to hold it together on the outside. The GI doctor came in to go over the procedure again, and then said it was time to go. As they wheeled Meg out, she turned to me and said, "Hopefully I come back all patched up!"

(As it turned out, the doctor came back with "good news, bad news." Her stomach was clean - no tumors, no ulcers. Her initial line of chemo successfully killed the stomach tumor, and it never came back. The liver metastases were really always the biggest problem. But once he saw exactly what was going on in there, he said there wasn't any kind of endoscopic procedure that could effectively help. )

Meg always had hope. She didn't see any other way to approach it. I just wish that we had a better chance at a real hope. Even something like a 50/50 shot. We wanted to believe that she had a better chance than the statistics said, but the lack of treatment options that those top hospitals presented to us told the real story.

So I guess there really isn't much of a decision to make, when it comes to whether or not I will participate in the advocacy day on the Hill. I don't know if I'll keep doing these events forever, but if there's a chance that someone else can be helped just by telling our story, that's something I need to suck up and do. There aren't many loud voices advocating for stomach cancer right now, and I really admire Debbie's resolve.  It's still a young foundation, and I'd like to try to support her. And I go back and read some posts in that stomach cancer Facebook group, and I see new people posting the same questions we were asking a year ago. Just looking for some hope, any hope. And I realize that I made the case myself, in this video that they put together from a 15 minute interview last May.