Our Last Trip

I mentioned in my last post that we started going to nice dinners on our anniversaries.  We really enjoyed doing tasting menus, although I obviously needed to have a vegetarian option.  =)

Well, around September/October, Meg had started feeling better, and then in November she was switched to a less intense chemo regimen.  She was still struggling with her energy levels and some other side effects, but her appetite had come back, and on many days she was feeling well enough to get out of the house.  Our social life had always been pretty heavy on drinking and staying out late, and obviously that was going to have to change.  But she could definitely enjoy a good dinner.  So we started looking at the Washingtonian’s “100 Very Best Restaurants” list and making reservations.  I decided that by the end of 2013, we were going to have 50 of them crossed off the list.  That was probably a little ambitious, but we were on a really good pace!  In addition to the 7 or 8 we had previously been to, from October to February we crossed off Willow, Restaurant Eve, Bibiana, Rasika, Adour, Graffiato, Lyon Hall, Mintwood Place, Mala Tang, Present, Estadio, and Indique.

But the best meal out of all of those was in early February.  We had been talking for months about trying to plan a trip somewhere.  We wanted to go to Florida, or the Caribbean, or anywhere where we could just get away and relax for a bit.  But cancer never gave us a break.  There was always something around the corner – delayed treatments threw off schedules, low blood counts dictated health cautions, and we were always waiting for the next set of test results to see what the next plan would be.  So we finally focused on the weekend of February 9^th.  It seemed like that should be a good weekend, and we’d be able to get away. 

We nearly had a flight to Miami booked when we got some troubling news towards the end of January.  Some blood tests indicated that Meg’s liver was starting to regress, and that the treatment that she was on was likely no longer working.  She was scheduled to have another round of treatment before the next CT scan, and the doctor wanted to wait to see the results of different blood tests before deciding what to do.  There was too much uncertainty to book a trip to Miami, so we started looking at local options.  We made a reservation for the Homestead resort – we thought the hot springs could be good for her.  But then the test results came in, and I decided to push the doctor to move up the scan.  It was obvious the treatment wasn’t working.  The earliest time they could fit her in was on the Sunday morning that we were planning on going away.  Meg was starting to have abdominal pain again, and the Homestead was 3 ½ hours away.  She wasn’t sure that she wanted to spend 7 hours in the car for just a 2-night stay.

Around that time, the Washingtonian came out with their new best restaurants list for 2013, and “The Inn at Little Washington” was ranked #1.  I had been watching the restaurant’s website, and they had a room special for that Thursday night.  Seemed perfect.  We decided we’d drive the hour out there on Thursday, have a good dinner, head to Charlottesville on Friday, and then drive back on Saturday in time for the scan on Sunday morning.  Booked.

On our way out there Thursday afternoon, we used Yelp to make a lunch stop at the Black Bear Bistro in downtown Warrenton.  Then we drove over to the Inn.  When they call the town “Little Washington” they mean it.  We thought maybe there would be some shops to peruse or something, but nope.  There’s the Inn, and that’s about it.  So we checked into our room, got a tour of the Inn from the kid who had a full-page picture in the Washingtonian (cleaning a glass), and then went into the lounge area for afternoon tea.

Ok, this is where I’m going to start the slideshow.

Tea included snacks, so we pushed back our dinner reservation and went to relax in the room for a while.  It was a pretty cool room. 

I think we counted something like 9 different places to sit, and the furnishings were all done really well.  And then we had a nice huge bathroom with a Jacuzzi tub, which Meg of course had to use!

The dinner was great.  Meg said it was the best food she had ever had.  She particularly enjoyed her beef entrée.

My main vegetarian menu wasn’t the ‘best’ I had ever had (I still have fond memories of the food at CityZen), but the service and overall experience was fantastic.   And I don’t usually like sweets, but I’d have to say that my 7-item dessert was probably one of the greatest things I’ve ever eaten.

Before:

After:

By the time that was gone, we were the last table left in the restaurant.  We got a tour of the kitchen and retired for the night.  But that wasn’t the end!  The next morning we had a nice little breakfast at a table looking out to the courtyard. 

Overall, just a tremendous experience.  It was quite expensive, but if you’re considering going there for dinner, I’d recommend staying overnight and getting the whole experience (as long as you’re someone who can relax and not spend the entire evening thinking about how much it’s costing!  I can relate; I used to have that problem – but no more!)

The next day we took the long way to Charlottesville, staying on the country roads and driving along the hillsides.  Once we got into town, we both knew what would really top the most extravagant dining night of our lives – lunch at Guadalajara!  Complete with a Jumbo Marg, for old time’s sake:

We didn’t really have any plans once we got to Charlottesville.  Meg was starting to get pretty bad pains in her abdomen, so we had to take it easy.  We checked into the hotel and rested, then went for a dip in the hot tub.  Then we started discussing where to go for dinner.  It’s always such a tough decision when we’re in Charlottesville - there are so many places we want to go to!  We were really disappointed when Northern Exposure closed several years back, as that was the one “nice” restaurant that we went to many times during college, the one we probably both considered our favorite.  It was also the location of our first solo dinner date.  My parents were visiting me during Easter weekend my first year at UVa, and that was the first time they met Megan.  (We went to Mem Gym and played 2 on 2 basketball – me and Meg vs my dad and my sister!)  On Easter Sunday we ate brunch at Northern Exposure with my family.  We liked it so much that after my parents hit the road, Meg and I decided to go back for dinner that same night!

Once we made the decision to go to Charlottesville, I was thinking about how much I wished we could go back and eat there.  But then I realized there was another restaurant we could go to – the location of our actual first date, on the night of the double date function at Sigma Nu.  It was Vivace, an Italian restaurant that we liked while in school, but because it wasn’t downtown I don’t think we had been back since we graduated.  I looked it up, and luckily it was still open.  So that’s where we went that night.  We were pleasantly surprised with the quality of the food – it was better than we thought it would be.  We spent the dinner reminiscing, trying to remember exactly where our table was on that first night.  13 years later, nearly to the day, we were sitting in the same place.  We laughed, talking about silly old things.  And we cried, feeling the weight of the memories and the uncertainty of the future.

We talked about going to see a movie that night, but Meg said she’d probably be much more comfortable if she was able to lie down in bed.  So we went back to the Omni and rented “Silver Linings Playbook”.  Meg didn’t like it, up until the part where they started dancing. =)  That probably wasn’t the best movie to watch - I didn’t realize that Jennifer Lawrence’s character was widowed.  Meg always wanted to stay positive – I think that’s why she spent so much time watching shows on channels like Food Network and Game Show Network.  It gave her a better chance at not being reminded of her cancer for a few moments.  Once you’re dealing with something like that, you become hyper-aware of every seemingly innocent mention about it.

The next morning we got up, grabbed some lunch, and again opted for the scenic route on the drive back.  It was a good trip, one I’ll always remember.  At least, I hope so, now that I’ve written this.  A few months ago, I could trace my way through every moment of that weekend and remember so many little things so easily.  Now, several months later, it’s harder to recall everything, and I’m sure that I've missed some details.  I’ve definitely forgotten some of the things we talked about.

I mentioned this in my first post – I’m so scared of the fact that I’m going to forget things.  I want to remember every moment, every conversation, every smile. 

Someone who’s walked this path gave me some great advice in April and told me to start journaling and describing my memories with Meg “in vivid detail.”  I’ve done some of that, but eventually it started becoming hard to do – hard to dip into that well so often.  In retrospect, I wish I slowed down a little bit over those months of April/May/June and spent more time writing, when it was easier.  Now, it’s usually pretty hard.  I’ve been doing a pretty good job at keeping it together recently, but sitting here, writing this, I’ve spent most of the evening crying, and I’ve had to take several breaks.  It reminds me of when Meg would write her blog entries sitting next to me on the couch.  We would be watching TV, and then quietly she would sit up, open the computer, and start typing.  Within a few minutes, I would glance over and she’d be staring intently at the screen with tears welling up in her eyes.  It feels good to get things out, to let people know how you’re feeling, but it’s not easy to do.   Sometimes I wonder why I’m doing this, that I’m unnecessarily torturing myself.  But I usually feel better after I’m done.

Once it started getting hard, in late May, I decided I needed to go away somewhere.  Anywhere really – I just needed to get out of the house and away from work so I could concentrate on writing.  So I spent a week in Colorado in June.  It was tough when I got back and people asked me “How was Colorado? What did you do?”  I talked about the places I stayed, the things I saw.  But in reality, I went there to get away from work and house chores, to drive through the mountains, and to sit in my hotel room and write.  I thought it would be so easy to write once I had no distractions in front of me.  But it didn’t work.  I came back with 10 pages of unfinished ideas and one below-average song.  I realized I needed to stop putting pressure on myself to write.  I needed to try to let it happen naturally.  And to do that, I needed to start eliminating the external pressures that were making me feel anxious and exhausted all the time.  If that’s how I was feeling every day, I was never going to have a clear enough head to feel like writing.

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Hmm. This is growing into a tangent off the main story, and I’d like to finish this tonight, so I’m going to abruptly cut that off and try to bring it back on course. I’ll talk more about what I wrote in Colorado at some point in the future.

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I try hard not to have regrets.  But I have wishes.  I wish that I could have taken more trips with Meg.  I wish that I was able to have some foresight into the timeframe we were dealing with, and how those few months were the best ones we had left.  We weren’t going to give up hope that we had years instead of months, but I wish we focused on having more trips like that weekend in February.  And I wish I took her to Fiji.

I found out that she had written a report on Fiji in the 5^th grade, and had always wanted to go there after that.

In the hospital in March, after we were told there were no more treatment options, I told Meg I was sorry that I didn’t take her to Fiji.  I don’t know how she continually had the strength to do this, but she managed to reassure me.  She told me that she had no regrets.  That she wouldn’t change anything.  She said that we had 13 great years.  She wasn’t going to get upset because she never sat on a beach in Fiji; she didn’t feel like she missed out because she never saw Paris.   She was only disappointed that we didn’t have more time together.

Sometimes I think she might have said a lot of things over those last few days just because she selflessly wanted us to be ok.  But I knew her better than I’ve ever known anyone, and we couldn’t really lie to each other.  So I’ve come to believe that she meant everything she said.  She was 32 years old, literally sitting on her deathbed, and all that really mattered to her were the relationships and love that she had with the people in her life.  Trips and vacations are important because they help create memorable experiences and foster the growth of that love.   This is a huge world, and there are a lot of amazing things to see out there.  You should do what you can to enjoy the heck out of life.  But in the end, I don’t think you’re going to be worrying about that one item left unchecked on your bucket list.  It’s less about what you see, and more about whom you see it with.

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.