Finding support - online

We spent 3 days thinking that Meg had breast cancer.  During that time, I started thinking about the new community that she was going to become a part of – or, I guess, that we were going to become a part of.  You see so many advertisements for breast cancer foundations, awareness events, and fundraising campaigns.  I glanced through some of the materials they gave us at the oncology office, and it seemed like there were three types of support groups – breast cancer, prostate cancer, and then everything else.  As tough as that weekend was, the fact that she probably had breast cancer did provide me with some small level of relief – at least this was something common that they know a lot about, and that so many other survivors had beaten.

Obviously, it turned out not to be breast cancer.  When they said gastric cancer, I didn’t really know where to turn.  I searched around on the internet, and found a few forums, but they were sparsely populated.  People would post questions, and responses took weeks or months to trickle in.  I found a few blogs, and while they provided me with some information, they didn’t really provide the opportunity for support or interaction.  A neighbor recommended a local facility called “Life With Cancer”, but again, they didn’t have anything specifically for gastric cancer.   It seemed impossible to find other people fighting the same battle.

About two months after Meg’s diagnosis, I was back on those same forums, looking for more info.  Now that I understood a little more about the lingo and the treatments, I dug a little further through the postings.  On the 5^th or 6^th page of one topic, someone commented that there was a facebook group for stomach cancer.  But it was a private group, so it could be tough to find if you didn’t know the exact name of it.  It’s called “Stomach Cancer Warriors and Caregiver Family.”  You have to request to be added, and then one of the admins will give you access and ask you to explain why you joined.  I believe the group was started in 2011, or early 2012.  When I joined there were around 100 people, now there are over 250. 

There is a lot of information there.  You can browse way back and see the journey of other patients.  What treatment they got, what kind of side effects they had, how they responded.  You can do a search for your treatment and read some conversations that people have had about it. (Although, for some reason, tonight the search function is only going back two months, which is leaving out a lot of information.  I’m hoping this is a temporary bug.) You can find out what kind of trials other people are on.  You can learn what some of the newest drugs are.  You can hear unfiltered opinions about people’s experiences at certain hospitals, or with particular doctors.  You can ask questions about anything and get responses from several people within a few hours.  You can talk to some long-term survivors.  You can find others who are in similar situations as you.  You can become part of this community.

But, that is both the upside and the downside.  This community, the stomach cancer community, is not an easy one to be a part of.  In addition to all of the information that is available in the group, there are also all of the struggles and heartbreaks.  Some of the earliest members of the group, the ones who were providing so much information when I joined, are no longer with us.   People go on there to not only share information, but also to share their troubles, and to find support when things are not going well.  I remember one week when it felt like there were 3 or 4 postings about warriors losing their battles. That can be very hard to take when you are trying to maintain hope.

I had told Meg that I had joined a facebook group, and I was relaying some of the information I found.  It was the source of most of the questions I asked our oncologist.  (Which, in the end, he told me were always very relevant, very appropriate questions – the same ones he would’ve been asking in my situation.  So I think this group led me towards the right information.)   But I never told her the name of the group, and she never asked.  Then, in November or December, I came home from work one day, and Meg said that she joined a facebook group called “Stomach Cancer Warriors”, and she asked if that was the one I was in.  My heart sank a little.  I felt like I needed to be in that group, to stay current on the information, but I worried that she would get discouraged by reading what people posted in there.  Like I said, there is no filter.  You take the good with the bad. 

Meg stayed active in the group for about two weeks.  She replied to a few people’s questions and shared some of her experiences.  Then, she told me she couldn’t look at it anymore.  She said people were just too negative.  Meg tried so hard to maintain a positive attitude, and exposing herself to negativity was not going to help. 

In a previous post, I recommended contacting a stomach cancer organization like Debbie’s Dream Foundation as soon as possible after receiving a diagnosis.  They will tell you the most important things that you need to know and the questions you should be asking your doctors.  Because of everything I just mentioned, I’m not sure if I’d recommended joining the facebook group right away.   But, if you can handle the reality of the situation (which I think you need to do at some point), and want to have a place to share and find information and support, then I think it’s a good community to join.  However, I do think it’s more appropriate for caregivers instead of patients (at least not stage 4 patients in the middle of their first line of treatment).  It was a great resource for me, and it allowed me to find other people who were going through what we were going through.  Some days, you feel like no one will get it unless they are living it too. 

So maybe there’s a better way to organize this community online.  But for now, this was the best that I found.

(Postscript:  I’m not happy that I’ve been posting so infrequently lately.  But I’ve been working through some stuff that I’m not sure whether or not I want to publicly write about yet.  I think I’m doing better now, hence this post.  Hopefully I’ll get back to writing about once a week.)

After Action Report

A few people have asked me how it went on the Hill.  I haven’t really been able to respond because I have mixed feelings.  I’ve tried sitting down to write this entry almost every night since then, and I’ve been struggling to do so. 

I think the foundation did a great job organizing everything, and it was an amazing group of people there.  Most of the group hung around for a second day for a Gastric Cancer “Patient Journey Day” with a pharmaceutical company.  It was an exhausting two days, but I’m glad we were able to participate and tell our story, and I’m glad that Janet, Tristen, and Donna were there with me.  Getting through those two days was tiring and not something I’d want to relive very often, but it was do-able.  What’s been tougher has been dealing with the new thoughts and emotions that have surfaced as a result of participating.  I really can’t believe it was just two weeks ago, it feels like it’s been two months since then.  But let me start by giving a recap.

On Sunday night we all met at the hotel for a dinner.  I was a little skeptical about getting a free meal for this, but it quickly became clear that it was going to be a working dinner.  They handed out a bunch of papers and gave us a crash course on how to approach our meetings the next day.  It was a firehose of information, but it was probably better than going in blind. 

The next morning we walked a few blocks and took some pictures together on the steps of the Capitol.  Then we all took off in different directions for our first meetings.  I had no clue that you could literally just walk right into the office of your representative.  I figured you would have to get a visitor badge or something, but nope, just figure out what building you want to go to, walk through a metal detector (note: if you’re going to be entering and exiting 5 times, it probably helps to not wear a belt that sets off the detector), and then try to figure out where the office is.  Our first meeting was literally in the basement of one building, and the office was so crowded that we sat down at a few chairs in the hallway.  But the other meetings were in nicer, less crowded offices, and we met in conference rooms.  In the afternoon I managed to get lost in a basement tunnel by myself, trying to run to another meeting.  The servicemen down there looked at me a little funny.

The meetings themselves were interesting.  I met with health assistants for the two Virginia Senators and my Congressional representative, and then also sat in with my mom on two meetings with New Jersey representatives.  They went about 15-20 minutes each, during which time we relayed our story and why we think it’s important to prioritize the under-funded cancers, specifically stomach cancer.

We heard over and over again how no one has ever come to meet with them about stomach cancer before.  One of them said “you don’t know how many breast cancer groups I need to meet with every year.”  But they said that this is what we need to be doing for the cause, “pounding the pavement” and spreading awareness.  This is where the large organizations for other cancers started out 10 or 15 years ago.  They said it would likely take time, but thought that the statistics we were presenting were pretty strong, and they wondered aloud why they never hear anything about stomach cancer, even though the statistics are so similar to other cancers like brain and ovarian. 

I think we connected with a few of the folks we met with.   They were sympathetic, and seemed interested in how this was impacting people.  But of course, then politics got involved.  We had to transition to asking if the representative would sign onto a letter asking the NCI to raise the profile of stomach cancer research. Most of them said it was unlikely that their representative would sign it, because they don’t think they should be telling the NCI how to spend its research dollars.  I think I’m a pretty rational person, so when they laid it out like that, I could see their point of view.  But then two of them brought up this "Recalcitrant Cancer Act" that was passed just a few months ago.   We had no clue what it was, so I had to look it up between meetings.  Here is the explanation of that act, from the Democratic Committee on Energy and Commerce website:

“This bill expanded the focus of the introduced bill, the Pancreatic Cancer Research and Education Act, to recalcitrant cancers, or cancers that have high mortality rates (five-year relative survival rates below 50%) and have not seen substantial progress in the diagnosis or treatment.  Examples include cancers of the pancreas, liver, lung and bronchus, esophagus, stomach and ovary.  H.R. 733 directs the National Cancer Institute (NCI) to establish scientific frameworks that will guide research efforts on recalcitrant cancers by identifying unanswered medical and scientific questions.  The NCI Director is required to convene and participate in a working group of Federal and non-Federal experts to assist in the development of each framework.  The frameworks must include a review of the current literature, identification of relevant scientific advances and qualified researchers, a list of initiatives and partnerships that can advance coordination of research, and research resources.  H.R. 733 requires NCI to begin with frameworks for two recalcitrant cancers --pancreatic and lung cancer -- but gives the Institute discretion to pursue additional frameworks. The National Institutes of Health (NIH) is directed to issue a report to Congress with recommendations on the effectiveness of the framework model.”

The health assistants who brought this up thought that stomach cancer research should fall under this act.  According to the first two sentences above, it definitely should.  But when you read the specific language in the act, it becomes clear that the only thing that the NCI is required to do is to provide additional research funding to pancreatic and lung cancers.  That’s great, but wait – why are all these representatives saying that they don’t want to tell the NCI how to spend its research dollars, when clearly, that’s what this act just did?  This is where I get frustrated.  And I also get annoyed when they tell me that we really need someone on the Hill to champion the cause – literally stating that we need a high-level politician or celebrity to get stomach cancer.  That’s when I get more frustrated.  But when I hear the same thing over and over, it makes me realize that’s how these things work.  And if we’re not out there telling Megan’s story, then other folks will be telling their own stories and getting all of the funding.  I don’t think that our story is any more important than anyone else’s story, but I do think that the numbers indicate something more needs to be done for the thousands of people battling this disease right now.

It was a long day, telling our story several times, but it felt like the right thing to do.  At the same time, it was also both comforting and painful to meet the group of committed individuals who traveled to DC as advocates.  There was Debbie, the founder of the foundation, who has an amazing attitude and has become one of the 4% of Stage 4 patients that make it 5 years.  There were the caregivers and family members who lost their parents, their siblings, their spouses.  There were the other “warriors” who put their chemo on hold to be there, or were still trying to adapt to life without a stomach.  Over 30 people, each with a reason to be there, each inspiring in their own way.  But it was tough for me to talk with most of them, especially the people going through it right now.  It was tough for me try to be encouraging, and in a way, I almost felt bad being there, as a glaring reminder of what the statistics say. 

There was a videographer there on Monday, capturing the story of our campaign.  After we walked out of one of our afternoon meetings, he was waiting there in the hallway to ask us how it went.  My mom gave a good recap, and then the videographer turned the camera towards me and asked what the experience had been like, if it had been rewarding.  I was caught off-guard by his question and thought about it for a second.  I wanted to give him the answer he wanted to hear, but I just couldn’t.  I said no, it really hasn’t been rewarding at all.  It felt like the right thing to do, because I want other people to have more hope than we did.  But it wasn’t making me feel any better.

That being said, I’m glad we participated.  Even if we just reached one or two people, and even if it takes years to make some progress on the funding, I think it was probably worth it.  I think I will feel better about participating in events like this as time goes on.  But one of the things that’s really been eating at me since then is how badly I wish that Meg could have fought for herself in DC.  She would have been absolutely fantastic at it.  (Her coworkers at Covance could probably attest to that.)  But she wasn’t given enough time.  It took a few months before she was ready to do anything as an activist, and then the cancer came roaring back so fast.  Back in October, when I told her that a foundation was doing a stomach cancer walk, the first thing she said to me was “Can we create a team?”  I know that if she was able to live with a stable disease for a prolonged period of time, she could have done some amazing things.  And I know that if I was the one who got cancer, she would have carried the torch.  So maybe that’s why I’m glad we did this.  Because I’m 100% certain Meg would have done the same thing if the roles were reversed.