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.

Going to the Hill

I’ve lived in the DC area for almost 10 years now.  Until this point, I’ve managed to avoid getting involved in politics about as much as anyone could while living here.  But tomorrow, I will be spending the day on Capitol Hill, meeting with staff from the offices of my elected representatives.  I will be representing Debbie’s Dream Foundation: Curing Stomach Cancer (they just changed the name from Can’t Stomach Cancer due to some legal issues, but this is the same foundation everyone donated money to in March).  30 other advocates from 14 states, including my mom and Megan’s mom and sister, will be there too.  We are going to be asking our representatives to make medical research funding a priority when generating the country's budget, and to participate with us in asking the National Cancer Institute (NCI) to raise the profile of Stomach Cancer research in relation to other types of cancer.  This type of lobbying happens every day on the Hill, often by groups and organizations much larger than we will be.  But it is believed that this will be the first organized call on Congress by stomach cancer advocates.  I can’t say that I am overly excited about this foray into a political arena, but the fact is, if we don’t go ask for funding then someone else will.  And while the last thing I want to imply is that our cause is more important than anyone else’s, I think we have a strong case for why stomach cancer needs more research funding.

Leading Causes of Death in US, 1975 vs 2008. 

Percent of All Causes of Death.

Source: http://seer.cancer.gov/csr/1975_2008/results_merged/topic_lead_cod.pdf

In general, cancer is responsible for a larger percentage of all deaths in the US now than it was 30 years ago.  While the medical community knows more about cancer now than it did in the 80’s, it is obvious that there is still so much work that needs to be done.  Some of the most common cancers have had lots of funding applied towards them, mainly because there have been amazing people volunteering their time towards raising money and generating awareness.  That has resulted in a lot of foundational research being performed that could allow new, more targeted therapies to be developed.  And in many cases, those lessons learned could then be applied to the less common cancers.  As far as chemotherapy goes, that’s what you will get if you have stomach cancer – drugs first developed for other cancers.  Irinotecan and 5-FU are two popular drugs used for stomach cancer, but they are really colon cancer drugs.  I believe that Herceptin and Xeloda were developed for breast cancer.  From my amateur viewpoint, I think it’s great that some of the drugs developed for the big cancers have been able to improve the survival rates for the less common cancers.  But they have usually been minimal improvements, and the overall survival rates for the less common cancers have generally not improved as much.  The primary chemo drug that Meg received has been around for 40 years!  They haven't been able to find anything better than that yet.  Research is the key towards improved survival, and until more is understood about stomach cancer, there is not going to be that “home run” drug that makes a dramatic difference. 

While overall stomach cancer incidence numbers have decreased over the past 50 years, there have been a few alarming trends recently.  One is that an NCI study found that the likelihood of being diagnosed with gastric cancer at age 25-39 years has increased by almost 70 percent since 1977.  Another is that a number of studies have reported that the incidence rate for cancerous tumors at the junction between the esophagus and stomach has been rising.  Megan was 31 when they found the tumor at her GE (gastro-esophageal) junction, so she fits squarely into both of these statistics.  There is concern among some professionals that there are new types of stomach cancer appearing, brought on by new causes.  But they just don’t know enough about it yet.  Heck, when we went to Sloan, the doctor there told us he would classify Meg as having Esophageal cancer.  Everyone else said Stomach or Gastric.  That scares me.  If they don’t even know what to call it, how do they know how to treat it? 

We met with Dr. Ronan Kelly at Johns Hopkins for the first time in January.  We wanted to hear about some clinical trials that Megan might be eligible for.  He mentioned a few potential options for the future, but they were essentially all generic cancer trials.  There was nothing specifically targeted at stomach cancer.  Dr. Kelly expressed his frustration to us, saying that he just can’t get the government to give him a grant for stomach cancer research.  You don’t realize how much it crushes your sprits to meet with doctors over and over again and hear about how there just isn’t any promising research on the horizon.  We went to these large cancer centers looking for hope, and all we received were condolences. 

Charts showing NCI research funding in relation to (A) Incidence, (B) Mortalities, and (C) Years of Life Lost.
Source: http://www.ncbi.nlm.nih.gov/pubmed/22800364

When the current NCI cancer funding levels are critically analyzed, stomach cancer falls into the “underfunded” category, along with other cancers like bladder, esophageal, liver, oral, pancreatic, and uterine.  In fact, stomach cancer receives the least amount of funding per cancer death in the US.  I got the chart above from a paper I liked, titled “A comparison of cancer burden and research spending reveals discrepancies in the distribution of research funding.”  The one thing I would change is that I wouldn't call any cancer "overfunded".  I would never argue that money should be taken from another cancer to be put towards stomach cancer.  But that fact is that there are some cancers that just aren’t getting enough research funding, and I believe that stomach cancer leads that list.  

So tomorrow we will attempt to convey this viewpoint to our representatives in DC, in honor of Megan.  This may seem like a personal cause for us, and I guess it is, but let’s be honest here: no amount of research is going to bring Megan back to us.  We’re doing this in honor of her, but it’s not really for her, and it’s not for us.  It’s for everyone else.  We lived through the pain that this disease inflicted, and there are too many other families that are dealing with the same tragedy that we did.  Megan fought through nine months of chemotherapy, but she was never given much of a chance.  The doctors told me that I should be thankful that she even made it that long.  I am thankful, but only because I know how grave this diagnosis can be.  In the U.S., more than 10,000 families will lose a loved one to gastric cancer this year.  I don't think that giving them a few months each is good enough.

"Wait, you live in New Jersey, and she lives in Seattle?"

I went through some old pictures this weekend, and came across a few from our first year of college. Over the years, when people would ask us how we met, Meg and I would simply say that we lived in the same dorm during our first year at UVA.  There wasn't really a singular moment, so we’d say that there wasn’t really a good story to tell.  Well, it really isn’t that great of a story, because it happened slowly over several months.  But it is our story, and I’d like to post some more light-hearted entries every once in a while, so I thought I’d recount what I remember of how we got together.

The first time I saw Megan was actually months before we ever talked to each other.  We were at UVA orientation the summer before our first year (there were several orientation weekends, but we both picked the same one).  There was some session in a large auditorium, and once it was over, everyone started filing out quickly.  But I noticed one girl in a ponytail bouncing down the auditorium steps and heading right up to the desk at the front of the room.  She just started chatting away with the professor, and I sat there and watched her for a minute before leaving, impressed for two reasons.  One, this girl seemed like she had her act together. And two, I could tell that she was athletic and pretty, two qualities that are not necessarily abundant in engineering schools.

The second time I saw her was a few months later, when she happened to be walking through my hall with another girl that I knew on their way to the first chemistry exam. The three of us walked over together, and I recognized Meg as that ponytail girl from orientation. I started going over a few last minute exam items with the other girl, but Meg clearly didn’t want or need any help.  She might have chimed in a few times, but she barely even looked at me!  She just kept her focus and walked calmly to the exam.  I later learned that she was not the last-minute cramming type.  Megan’s approach was to feel like she did the work and knew the material, and trust that she was smart enough to come up with answers for anything that she might have missed. 

Later that fall, Meg gradually started hanging out with some of the guys that lived on my hall, including my roommate.  That first semester, I spent most of my time hanging with guys in another dorm that I had met during the first week of school.  My roommate and his friends didn’t seem like they went out too often, so I didn’t think I was missing much.  But when they went out for Halloween, they all congregated in the hall outside my room.  Meg came down, dressed in some of her mom’s clothes as a 70’s hippy.  That was the first time I was jealous that I wasn’t going out with them.

Meg came by our room a few times that semester to see my roommate; they were becoming friends.  The first time she hung out in our room, I had the website up for my high-school band, and there were a few pictures on the page, including one of me wearing a bleached-blonde wig during a show.  I convinced her that I used to have long hair, and didn’t tell her that I was joking until the next semester. Little did I know that long hair on guys was a major turn-off for her!

Milltown, NJ - July 4, 1999

When we came back to school after winter break, I started hanging out a bit more with that group that lived in my dorm.  We’d go to Mem Gym and play some pickup basketball, go to the cafeteria together, hang out in someone’s room, and go out on the weekends.  One night in February, we were out at a frat party and I started dancing with Meg.  She held my hand for a bit while walking home, but then I think she realized we were walking with a bunch of other people, and she let go.  So I wasn’t really sure how she felt about me at that point.

The next week, everyone came to a party at my frat house.  I was working the bar when they got there, and when Meg got a drink I told her I wanted to dance with her after my shift was over.  (If it wasn’t for alcohol, this whole affair would’ve probably taken even longer to transpire.)  So we danced for a while, and for some reason we left early, I think because Meg said she wasn't feeling great.  So we left the party and walked back to the dorms on our own.  We went back to my room, I got her some water, and she laid there for a bit, not feeling well.  Then all of a sudden we were making out.  Not sure how that transition happened!  (Don’t worry Mike, it was all very PG.)  A few minutes later, we heard keys in the doorknob, and the door flung wide open, with my roommate standing there.  He made some reactionary comment, then announced to everyone else that Meg was in our room.  He got into his bed, and we continued making out.  After a few minutes, he jumped up out of bed and got on his computer.  He started typing loudly, and wrote a four or five-page essay.  He printed it out, taped it to our front door, and then went back to bed.  The title of the essay, in large letters, was “This is my f****** life.” 

Ok, so it turns out my roommate might have had a crush on Meg.  Who would’ve known!?  It all worked out though.  He got back together with his high school girlfriend shortly after that.  Plus, we ended up becoming much better friends that semester, due in large part to Meg's influence.

The following week there was a double date function at our fraternity.  (That means you bring a date, and you also invite a friend to come with a date.)  Since our only previous interactions were alcohol-influenced, I was still a little nervous to ask Meg out.  She was in our room one night during the week, and my roommate caught me off guard by asking if there was a party at our frat that weekend.  I said something like, “Well, yeah, I was thinking maybe you guys could come with me?”  The next night, I explained to Meg that it was a date function, and asked if she’d want to go with me.  Several months later, Meg revealed to me that she and Brian already knew it was a date function - they had found out from someone else.  So Brian completely set me up with his question, and Meg often teased me about how un-suave I was about the whole thing.  Not that I needed someone to remind me of that!

Our first date - Late February 2000

So that’s how we started dating.  That semester was the best 5 months of my life (although my grades would beg to differ).  We had a great time with that group of friends from our dorm, I joined the fraternity and started making some really strong friendships, and I started dating this amazing girl.  I remember telling people how obvious it was, right from the start, that Meg was a keeper.  We had nothing but good times those first few months.  Combined with everything else that makes your first year of college so exciting, it will be a period that I always look back on with fond memories.  On the last night that everyone was in town, the group of us from our dorm went out for dinner, and then went to lay on the Lawn to stare at the stars and recall some of our favorite moments from the year.  I remember thinking how great that bond was that we all had together, and how much better it was for me with Megan there. 

The group of us from Kent on our last night - May 2000

The next day, with people starting to leave town, we went out to grab some dinner with a few of my pledge brothers.  On the bus heading to dinner, we were talking about what everyone was doing that summer.  My friend Craig looked at us and said, “Wait, you live in New Jersey, and she lives in Seattle? …  That’ll never last.”   =)