Save the Date

On November 2, the DC/VA/MD chapters of Debbie’s Dream Foundation: Curing Stomach Cancer are hosting the 3^rd “Cocktails and Cupcakes” benefit event.  It is going to be in downtown DC at the RIAA’s event space from 8:30 to 10:30 PM, and will feature drinks, dessert, live music, and raffles/auctions.  It costs $40 to attend ($75 per couple), which I think is pretty reasonable, and you’ll be supporting a great cause.  All of the info can be found on a flyer here:

http://www.debbiesdream.org/portal/documents/33005/686180/2013+DDF+Cocktails+%26+Cupcakes+Invitation.pdf

If you are going to be in town that weekend, please consider attending.  This event happens to be one week before Megan’s birthday, and it’d be great to use it as a way to celebrate her.  Especially considering that the combination of sweets, cocktails, and friends would pretty much be her definition of a perfect evening!

Since the event itself is more of a dessert theme, we’re going to organize a dinner beforehand for anyone who would like to join.  We are talking with a few restaurants in the same area as the RIAA office, and are thinking we will get a private dining room from about 6-8PM.  We are in the early stages of looking into this, but anyone who would like to join is welcome.  Even if you don’t really know me, but maybe knew Megan – we’d love to have you there.  Just send me an email at adamkuchinski@hotmail.com so we can include you in the headcount and information emails (and it’s just a rough headcount at this point, so don’t feel like it’s a commitment.)  Or you can RSVP on the Facebook event page for the dinner at https://www.facebook.com/events/629612107072226/.

If you'd like to come to the event, I'd recommend buying tickets somewhat soon, as I think the capacity is going to be somewhere between 200-300 people.  You can purchase them here:

http://www.debbiesdream.org/portal/upcoming-events2#cocktails

There are also sponsorship opportunities available.  You can contact me at the email listed above for more information about that.

Hope to see you there!

My problem with Hopkins

Back in my entry from April 30, I talked about how we went about trying to get second opinions from some top research hospitals before starting Meg on her first line of treatment.  I mentioned how I was calling Johns Hopkins every day, but said that was a story for another post.  Well, this is that post.

We ended up seeing an oncologist at the Kimmel Cancer Center at Hopkins, but not until January, when we had a feeling that Meg’s treatment wasn’t working anymore.  We liked the doctor we met there; he talked about a bunch of treatment options and clinical trials.  There is research going on at Hopkins that isn’t being done anywhere else, and they are leading or participating in many trials.  We also communicated over the phone with two other oncologists from Hopkins, and they seemed like really good doctors to work with.  In fact, even after Georgetown and Sloan Kettering said there was nothing else that could be done, the Hopkins oncologists were still trying to come up with a treatment plan.  Meg never actually got treated there, so I can’t speak to what it’s like being a regular patient at Hopkins and dealing with the large volume of people that are in and out of there every day.  But, if someone living in the DC area asked me where he or she should go for a second opinion, I would recommend Hopkins without hesitation.  They seem like knowledgeable, caring doctors, they are plugged into the latest treatment options, and it’s close enough that you could actually commute there for treatment if necessary. 

So now that I’ve said all this good stuff about Hopkins, what’s my problem?  It’s the fact that we weren’t able to get a second opinion from them before Meg started treatment, because I couldn’t get through their referral office to talk with an actual doctor or nurse.  Before I go into more details, let me relay my experiences with the other places that I contacted.

I called Georgetown on the morning of Thursday, July 5.  We still weren’t sure what type of cancer it was at that point, but they were leaning towards colon cancer. I can’t remember if I called the main Lombardi Cancer Center number, or a specific number for the Gastrointestinal Cancer department. But I was immediately connected with a nurse navigator within that department.  She took our information, emailed me a few forms, and followed up a few hours later letting us know that we had an appointment for the following Monday (4 days later).   She clearly understood the urgency of our situation, and made an effort to fit us in as soon as possible.

I called Memorial Sloan Kettering in October.  Megan was having a good response to her chemotherapy, but we wanted to make an appointment for another opinion there.  We had gotten the name of a surgeon to call from one of the stomach cancer foundations, so I called her office directly.  The woman who answered the phone explained that I needed to call the main referral number, and they would collect our information and pass it to the doctor’s office.  So I did that.  And I was impressed with the process - the referral office was very organized.  It seemed like there were quite a few people working there, but I was connected with one guy specifically, and I talked with him several times over the next few days.  After sending him a fax, I would call a little while later to check that he received it.  He would have it on his computer, and then he was able to send it directly over to the doctor through an electronic system.  The surgeon reviewed Meg’s files and said she didn’t see any reason for surgery, and referred us over to a medical oncologist.  He gave a quick opinion (relayed to me through the referral coordinator) that Meg’s treatment was looking good and he didn’t see a need for us to travel up there at that specific moment.  When I pressed with a few more questions, he said that we could make an appointment if we’d like, and we did that.  After we had seen him in person, we were able to get remote opinions without having to travel back up there.  I would fax over some updated scan results with a note, and I would get a call back within a day or two from the oncologist.  This was really convenient, and I just needed to make sure I was ready with all my questions when he called.

In addition to Georgetown and Sloan, we also got another quick opinion from an oncologist at Massachusetts General.  I had found a trial online, and a family friend that works at that hospital emailed the oncologist that had led the trial.  The oncologist was actually traveling, but responded within an hour and referred us to his nurse. I left her a message, she called me back an hour later, and we talked about what made sense for Meg’s situation.  I had one more question for the oncologist about the chemo regimen, and she followed up and got me answer within a few hours. 

Now back to Hopkins.  I looked around on their website to find the right number to call.  No matter what cancer I looked at, every webpage had the same number listed when you clicked on “Request an Appointment.” So I called that number on July 2 (a Monday).  An automated system answered, and I was told “For Medical Oncology press 1, for Radiation Oncology press 2.”  Huh?  I had no idea which number to press.  There was no other option, and I didn’t know what to do, so I actually hung up the phone.  I thought, "Why do I have to decide between medical oncology and radiation oncology?  Don’t I want both of them? My wife just got diagnosed with cancer, and I have no clue what the difference between those two things even is!"   This wasn’t starting off too well.  I thought about it for a few minutes and called back.  Medical oncology seemed a little broader; radiation oncology seemed very specific.  So I pressed 1. 

Then I sat on hold.  And I continued to sit on hold.  For over an hour.  Seriously.  This was the first big hospital I was calling, so I thought maybe this was the norm.  Finally, I got frustrated enough that I just hung up and called again.  This time someone picked up within two minutes of being on hold.  I could say maybe that was a coincidence, but I had this situation repeat itself several times.  Sit on hold for 15 minutes, hang up and call again, and then someone answers right away.  Obviously their phone system is not ideal.

But all of that would’ve been forgiven if the person that answered the phone was helpful.  I told them the details of Meg’s situation, just like I told Georgetown a few days later.  She had been diagnosed with cancer, the local hospital had run a bunch of tests, but they hadn’t been able to figure out exactly what it was yet.  I said that I wanted to get my wife into Hopkins and have their doctors look at her case.  The woman flatly responded by telling me that she could not make an appointment until we had a specific diagnosis.  Hmm.

One year later, I can see why she said this.  At least in theory.  The oncologists at our community hospital dealt with all types of cancers.  Oncologists at the large research hospitals typically have very narrow specialties, and the departments are broken apart by cancer type.  So she needed to know who to direct us to.  Even still, I don’t think that “I’m sorry, I can’t help you yet” is an acceptable answer.  She literally told me that we had two options.  We could either wait until we get a specific diagnosis and then call back to make an appointment, or we could check Megan into the Emergency Room at Hopkins so that they could run all their own tests and make their own diagnosis.  Meg had already been through a battery of exams, and her condition was rapidly deteriorating.  To check her into an ER and make her redo all of the MRI’s and CT scans and blood work and doctor's exams seemed absolutely ridiculous.  So that was not an option.

I really wish that I could’ve spoken to a nurse at that point.  From my experience, if they would have connected me to a nurse navigator, she probably could’ve been much more helpful and made a determination about what type of doctor we should’ve made an appointment with.  But being a novice, I didn’t know what to ask for, and I didn’t think there were any other numbers I could call. 

The next day we got the word that it was likely colon cancer.  I called the woman back, said that it was now diagnosed as colon cancer and explained the urgency of the situation.  She gave me an appointment for about two weeks out.  I asked if there was anything sooner, and she said no.

That Thursday (two days later) we found out it was gastric cancer.  I called her back again, asking if there was any way we could see someone any sooner, as the local doctors were urging us to start chemo the following Tuesday.  She gave me an appointment with a different doctor, and said the earliest possible appointment was the next Friday.   At this point I was getting really frustrated.  I called her back the next day and asked if there was anything else that opened up.  She now told me that if I faxed copies of the scans to her, she could give them to the nurses and get a quick opinion from a clinic.  I sent her two of the scans that day, and then we received another one over the weekend and I sent it to her on Sunday night.  My gmail has four emails sent to her over those few days, with no responses from her.  I tried getting in touch on Monday, left a message, and didn’t get a call back.   We got the second opinion from Georgetown, Meg started chemo, and we forgot about Hopkins for the time being.

Four months later, we saw the oncologist at Memorial Sloan-Kettering.  He said he would actually classify Megan’s cancer as esophageal cancer.  We hadn’t really heard that before.  So I started looking into esophageal cancer, and found my way back to the Hopkins website.   I found this page:

http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/esophageal_cancer/diagnosis_treatment/

On that page was this paragraph:

Same-day consultations with a team of esophageal experts

The need for immediate, effective treatment is why the esophageal cancer experts at Johns Hopkins created a multi-disciplinary clinic for esophageal cancer patients. Patients, both those already diagnosed and those who may have symptoms, can call in and talk to an esophageal cancer care coordinator who can direct them to their first steps, whether that is diagnosis and staging or an appointment with the multidisciplinary team. Patients can also find out about available clinical trials during that call.

Down towards the bottom of the page, there was a number to call.  It was different than the number that the “Request an Appointment” link on the right side of that very same page gave me.  So I called this new number, and I was connected directly to the department.  I gave the woman who answered the phone a little bit of information, and later that day I received a call back from a nurse.  At that point, Megan’s situation wasn’t urgent, so after talking with her, we decided it made sense to just schedule an appointment with an oncologist and take things from there.  However, I believe that if I had talked to her during that first week, she would’ve gotten Meg’s information in front of the right doctor immediately. 

I think their system really failed us. There was a reasonable chance that Hopkins might have had a trial that could’ve been an option for Meg back in July. (Now, there’s no reason to necessarily believe a trial would’ve been better for her than the treatment she received - you can check the April 30 post for more info on this). But I tried to get one of the top ranked hospitals in the country to review Megan’s case, and I felt like I was stonewalled. And I recently heard from someone else who tried making an appointment with the same oncologist that we saw, around the same time that we saw him. But she was told that he does not see stomach cancer patients, and she got really frustrated knowing that they were wrong. So I don't think my experience is completely unique.

I learned that sometimes, instead of calling the main phone number that they display in large print, you might be better off calling a doctor’s office directly. All of the nurses I spoke with on the phone were really helpful, and by and large, the doctors seemed like they tried to respond pretty quickly. It’s very disappointing that patients may not be getting a much needed opinion just because someone in the Hopkins referral office won’t connect them with a nurse. So call directly if you feel like that is happening to you. The large cancer centers have the doctors and nurse coordinators listed on their website, and they usually have a direct office line listed. It just might take a little digging to find it.

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.