Ok, If You Queso

Today is our anniversary. 

Seven years ago Meg and I were married.  A little over 6 months ago, I lost her - about 50 years too early. 

I’ve never been one to make a big deal about anniversaries or my birthday.  Luckily Meg was pretty cool with that, and said all she really wanted was a card.   Our first few anniversaries we stayed in and cooked dinner together.  Then we took a cue from some friends and realized it was a good excuse to go out for a really nice dinner.  So I went out for dinner tonight, but I didn’t plan ahead, so I didn’t go anywhere nice.  I went to the Mexican restaurant a few blocks away from our house.   Meg and I went out for Mexican all the time.  I can’t imagine how many baskets of tortilla chips we shared, sitting across the table from one another.  Actually, while I was sitting there tonight, I tried to calculate it, and I’d guess that we went out for Mexican over 200 times together.  I think 15 times per year is a pretty safe estimate - our 3^rd and 4^th years at UVA we went to Guadalajara twice a week.  She’d get a quesadilla, tostada, and/or a beef taco.  I’d get Vegetarian Combo #1.  Maybe we’d split some Queso – she loved the “white cheese” they had there.

Anyway, I'm hoping to continue posting on this blog at least once a month.  It's been getting harder to write, and today is my last chance for September.  So I was thinking that I would write about how I’m feeling today, and how it’s really no different than any other day.  I didn’t think about Meg more when I woke up this morning just because it was our anniversary.  Some mornings I spend a long time in bed just lying there and thinking about her - I don’t need to save that for once a month or once a year.  I didn’t notice any new, unique feelings today.  Everything was pretty familiar. 

So why do we make such a big deal about anniversaries?  I left work a little early today and went by the cemetery to place some flowers on her grave.  And as I stood there, I started thinking back, first to last year.  We had dinner with our parents on the Saturday night before our anniversary, then had Sunday brunch with the priest that married us, and then spent that night watching the Giants/Eagles game.  (Man, she was a good sport.)  We went out to dinner at Restaurant Eve the following night.  I thought about how tough that dinner was.  We were trying to celebrate another year, but we had this major cloud hanging over us, threatening to make this the last anniversary we would spend together.  Then I compared that dinner to the two or three before that, when we could actually celebrate.  On our fourth anniversary we had an awesome 3 ½ hour dinner at Cityzen that we talked about for months afterwards.  And then I kept going back, to our wedding, and thought about how great that day was.  When we woke up the morning after we were married, I told Meg that was the best day of my life, and time has done nothing to make me question that opinion. 

I realized that maybe anniversaries are a little different, because we are remembering something special and unique in our lives.  So we celebrate because we want to remember these happy moments.  And because that original day was memorable, so too are all of the annual activities we plan to commemorate it.  We all wish each other a “happy” day.

However, no one has said happy anniversary today.  Instead, some have said that they are “thinking about me.”  (Which is very nice and much appreciated.)  There is a distinct shift in tone.  And the fact is, it is warranted.  Maybe someday I’ll be able to feel peace and laugh about the good times again.  But today, I feel less whole than I did a year ago, and much less than the year before that.  Anniversaries come with memories, and those memories make us take stock of where we are now, compared with where we were then.  And sometimes the differences between those two points in time can be painful.

So maybe this day is a little different than the other days.  But in many ways it’s the same.   Every day I’m trying my best to put one foot in front of the other.  It’s a slow process, but I think I’m learning to walk again.  It doesn’t mean I miss her any less or that I don’t still think about her all the time.  Sometimes I really struggle to accept the fact that she’s not coming back.  Unfortunately, it’s not until after you lose someone you love that you realize how badly you'd like to have one more moment with them.

I’ve been going out for Mexican food much less frequently recently.   That means that a lot of nights, I find myself home, sitting alone with my guitar.  Sometimes I write songs and hopelessly try my darndest to sing in tune.  And sometimes I press the record button on my phone.  This is from a few months ago, but it's how I'm feeling tonight.

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.)