Talking to Congress about Stomach Cancer

Next Thursday, March 5, is the 3rd Stomach Cancer Capitol Hill Advocacy Day that I will be participating in with Debbie's Dream Foundation.  I've written about these in past entries, but the basic point is this - stomach cancer does not receive a lot of research funding, and the prime source of funding is the government.  Debbie's Dream Foundation (DDF) organizes a group of people and arranges for us to each meet with our representatives so that we can tell our stories and let them know how little funding stomach cancer receives.

Last year we had representation from 16 states and participated in over 70 congressional meetings.  We asked for stomach cancer to be included in the Department of Defense's Peer Reviewed Cancer Research Program (PRCRP), where it would compete through a peer-reviewed process for research funding.  There are a limited number of cancers eligible for this program, and stomach cancer was never on the list.  Due in large part to the work of DDF and the volunteers who participated in last year's Advocacy Day, stomach cancer was included as eligible for funding under the PRCRP in Fiscal Year 2015.  This is a significant milestone for stomach cancer, which has had a hard time competing for research funding at the National Cancer Institute against other cancers that already have more foundational research.

It was great seeing positive results from last year's effort.  I wrote about how I initially wasn't sure if I wanted to participate again, because it was pretty hard the first year.  But I think I handled it much better last year, especially having been through it once before and knowing what to expect.  And these young foundations definitely need lots of continued support.  I probably should have posted this weeks ago, but please contact DDF if you'd like to help us.  Even if you're reading this after the Advocacy Day has taken place, or if you can't join us in DC, there is always the opportunity to call or email your representatives.  DDF will help you and tell you what to say, so it's not as scary as it sounds!

In addition to participating in the Advocacy Day, I also spoke during two congressional briefings last year.  The first was the day after Advocacy Day last February, where I sat on a panel alongside Debbie and some top researchers, including Dr. Ajani from MD Anderson.  The second was in June, at a briefing hosted by the Deadliest Cancer Coalition in cooperation with the new Congressional Caucus on Deadliest Cancers.  Representatives Lance (NJ) and Eshoo (CA) opened the remarks and said it was the first time they had ever seen a room so crowded for a briefing like this.

Congressman Leonard Lance, Dr. Anil Rustgi, and me

Standing room only

I went last.  These can be tough to do because I tend to get really emotional when someone asks me to talk to a group about Meg's cancer.  I still prefer to focus on the good memories when possible, but I'm glad that I spoke.  The audience for these meetings seem to include a lot of young staffers, and I think it's good to present a personal story that they might be able to relate to.  So we played the video that DDF made in 2013 (posted at the end of the entry two below this one).  And then this is what I said:

The interview for that video was filmed last May, exactly 2 months after I lost my wife Megan to gastro-esophageal cancer.  In May 2012, just one year before that, cancer was the last thing on our minds.  We had been together since our first year of college at UVA, had just entered our 30’s, and like lots of married couples around that age, we were ready to start a family.  So we were spending a lot of time talking about our future, making plans that would impact the rest of our lives.  Then one Wednesday night in June, after a softball game with some of our friends, Meg said she just didn’t feel right and suddenly got really upset.  She wasn’t sure why she felt so tired during the game and got out of breath so quickly.  The next day, she noticed that her abdomen felt swollen.  Three days later, we went to the hospital, and that quickly, everything changed...

Being told that your 31-year-old wife has cancer is pretty tough to wrap your head around.  Being told that it’s stage 4 because tumors have spread from her stomach to all over her liver, and then figuring out what that actually means, is beyond any emotion that I could actually describe.  I wanted to help her fight and beat it, like the other young cancer survivors that we’d known.  But then the doctors bluntly said that there was no cure for this type of cancer, that she was going to be on palliative chemotherapy for the rest of her life, and that they had no way of knowing if the rest of her life was going to be any more than a few weeks.  And just like that, all that planning for the future didn’t matter anymore.  All I wanted was as much time as we could get, and all she wanted was hope that someday she could live a normal life again.

I mentioned in the video that Meg had a really good response to the initial line of chemo.  And she did.  The primary tumor in her stomach went away, and she was actually able to get to the point where she felt pretty good every other week, when she didn’t have to get chemo. But the metastases in her liver never went away.  So we figured ok, that first line of chemo helped – she’s doing better now, and she’s in better condition to really fight.  Let’s go find the cutting edge treatment and knock out the rest of the tumors.  So we went to Georgetown, we went to Sloan-Kettering, we went to Hopkins.  All of the doctors said her scans looked amazing, considering how advanced the cancer was at the time of her diagnosis.  But in the same breath, they also said it was very unlikely that the chemo she was on would get rid of all of the tumors in her liver.  On top of that, (and here’s the part that we just couldn’t understand) – they said there wasn’t anything else they had to offer that they had reason to believe would do any better.  One doctor actually said it would be unethical for him to change her primary chemo drug, as long as it was keeping the existing tumors in check for the time being.  We weren’t satisfied with the concept of just “keeping the tumors in check”, we wanted to get rid of them, but these top hospitals were telling us that there was nothing out there that they felt confident could do that.

Two weeks ago I attended a funeral service for my great Aunt, who battled leukemia.  She was put on an experimental drug over 20 years ago, and that drug gave her and her children and grandchildren years of love and happy memories.  At the service her son spoke, and he talked about how grateful she was for that time, and how she said that every day had been a gift.

I got nine additional months with Meg after her diagnosis.  And while that time was extremely tough for all of us, I’m so thankful for those nine months, because we were able to have some beautiful moments.  This past August, Meg’s uncle (a non-blood relative) was diagnosed with pancreatic cancer.  He passed away less than 5 weeks later.  Without obvious warnings signs or established screening methods, these cancers are just being found too late, too often.  

Towards the end, Meg told me that she didn’t have any regrets; she just wished that we had more time together.  While she was fighting, all she wanted was hope.  Hope that someone could survive stage 4 stomach cancer.  Hope that the tumors would go away. Hope that we could someday live a normal life again, and live it for decades, not months or a few years.  I don’t think a prognosis of a few months is good enough for anyone, and when you’re 31, it’s pretty much incomprehensible.  When you’re fighting terminal cancer, you cling to any semblance of hope that you can find.  

And where can you find hope?  You find it in survivors who live to tell their stories.  And you find it in promising clinical trials and cutting-edge research.  And right now, there just isn’t enough of that for these gastrointestinal cancers and other poor-prognosis cancers.  Megan never lost hope, even after we were told that we were out of options.  We need the treatment options to match the hope and strength that the people fighting this disease demonstrate every day.  Which is why it is so critical that we increase the research funding levels for these cancers.  It’s been shown that an increase in research funding strongly correlates to increases in survival rates.  Research equals survival.  Research equals hope.  

One Year - One Smile

So, as of about 12:40AM this morning, it's been exactly one year since we lost Meg.  That moment a year ago, that was by far the most agonizing moment in my life.  I thought I would come home tonight, do some reminiscing, get emotional, and write something sad and somewhat depressing. That seems to be the routine for these milestone days.  The worst was New Years Eve - I was a wreck that night before I eventually pulled enough of myself together to go meet some friends.

But as I sat down to write tonight, I realized that I didn't really feel like being depressed.  I saw this photo that my mom posted on facebook earlier today:

My favorite photos of Meg are the ones that capture her laughing or smiling, and not necessarily posing for the camera.  Those are the ones that really trigger strong memories of her personality and what I loved so much about her.  She seems to come alive in those pics.  Just now, looking at these pictures reminded me of the times on our couch or in bed where we would start laughing so hard at something, and then we'd just be laughing at each other and wouldn't be able to stop.  I don't have pictures or videos of those moments, so I need to settle for the good pics that I do have, and hope they continue to trigger new happy memories.

A few months ago someone asked me what Meg's passions were, and I didn't really have a good answer.  If someone were to ask what my passion was, I'd probably say something like music, so I think I replied by saying that Meg wasn't really too passionate about hobbies.  Afterwards, I was pretty pissed at myself for not having a better response.  As I thought about it, I realized that she was probably most passionate about bringing joy to the friends and family in her life.  I don't think she would have said that if you asked her, partly because it sounds corny, but mostly because it was just part of who she was, and she didn't really understand people who acted differently.  Anyone who responded to her with a similar desire to be friendly and fun was immediately accepted into her world.  We were somewhat different in that way - she was inherently trusting of people until they gave her reason not to be, while I am initially much more reserved until I see a reason to open up to someone.  And that's just one small factor towards why she was so good for me.  But that passion, that openness, that joy, I can feel that when I see her laugh.

I thought I would post last year's eulogy tonight, but that's wrought with emotion, and I can save that for another day.  Today I just want to remember Meg as I want to remember her - being silly, laughing with friends, and sharing the love.

Haha, this one kills me, we were both dying when we saw the moment that got captured.  We were joking around on the floor and laughing, and then I accidentally starting applying pressure on her arm.  Her face is in the middle of transitioning from laughter to agony, and I'm still just laughing, so it looks like I'm really enjoying the pain that she's in!

This is the first GIF I've ever made!  I didn't even know this clip existed until I found it tonight.

Dec 2012 - A week after chemo, and toughing it out at at cold and rainy Giants game

Roadblock!

Last May/June I wrote about going to Capitol Hill to advocate for stomach cancer awareness and research funding. In February we will be joining Debbie's Dream Foundation in DC again. I probably should have posted this a while ago, but anyone can participate. You can find more information here (or just call the foundation and ask about how you can help):

http://www.eventbrite.com/e/debbies-dream-foundation-curing-stomach-cancer-capitol-hill-advocacy-day-tickets-9559076455

I wasn't really sure whether or not I wanted to do this again. Last year was pretty tough, especially with it being just two months after we lost Meg. I'm putting a lot of effort into getting my life back on track, and I can't tell yet if participating in these advocacy events sets me back or helps me move forward. She's already in my head all the time, and I'd prefer to focus on the good times. There are certain triggers that really hit me hard, and many of them revolve around Meg's attitude through her treatment, the hope that she maintained in the face of overwhelming odds. I've talked about this before...

But here's a quick story. On March 14, 2013, just 4 days after her last blog post, we checked Meg into the hospital because her liver was failing. Her symptoms were getting really bad, but we still had hope that there was going to be another chemo option and that the tumors would start responding to the treatment. I was communicating over the phone with oncologists from Georgetown, Memorial-Sloan Kettering, and Johns Hopkins. One by one, they all started telling us there were no available treatments left. Our local oncologist came to visit her hospital room that afternoon and we had the talk that you never want to have. We understood what it meant, that they couldn't give her any more chemo unless her liver got better, and the likelihood of her liver getting better without chemo was beyond a longshot. In fact, they actually believed that the tumors in her stomach had likely come back, and that was causing the blood loss she was experiencing. The only way to confirm this would be through an endoscopy. Armed with our iPhones, we were all finding details on an unrelated endoscopic procedure that could be performed in some situations to address blood loss due to liver problems. So we really wanted an endoscopy. The gastroenterologist and oncologist told us no, that it was too risky in her condition. They went away, we cried and stressed, and asked for the GI doctor to come back. We told him we wanted him to do the procedure, and he agreed, but said that he had to tell us there was a legitimate chance that she wouldn't survive it. Meg didn't think twice about it, she wasn't ready to give in if there was any chance of finding something that could help. So they got us on the OR schedule for later that evening. When it was time, the physician's assistant came to wheel Meg down. She was in good spirits, probably handling it better than any of the rest of us there. She sat there in her Giants winter cap, energy sapped, dealing with pain, and she still had that smile on.

I followed the lady as she wheeled Meg's bed onto the elevator to head downstairs. Then there were a few hallways to navigate. We turned around a corner, and came upon a cleaning cart right in the middle of the aisle. The lady paused for a second, not sure what to do, and Meg said, "Uh oh! Roadblock!"

It might seem like such a minor thing now, but in that moment, it amazed me that she was able to make a joke like that. I think I laughed, but if I did, it was probably more a laugh of sadness and appreciation. I pulled out my phone and snapped a photo, because I wanted to remember the strength that she showed in that moment. On the day that she was told she was going to die soon, on the way to the procedure that might do it.

We got down into the OR and sat in a waiting room. I was freaking out, but trying to hold it together on the outside. The GI doctor came in to go over the procedure again, and then said it was time to go. As they wheeled Meg out, she turned to me and said, "Hopefully I come back all patched up!"

(As it turned out, the doctor came back with "good news, bad news." Her stomach was clean - no tumors, no ulcers. Her initial line of chemo successfully killed the stomach tumor, and it never came back. The liver metastases were really always the biggest problem. But once he saw exactly what was going on in there, he said there wasn't any kind of endoscopic procedure that could effectively help. )

Meg always had hope. She didn't see any other way to approach it. I just wish that we had a better chance at a real hope. Even something like a 50/50 shot. We wanted to believe that she had a better chance than the statistics said, but the lack of treatment options that those top hospitals presented to us told the real story.

So I guess there really isn't much of a decision to make, when it comes to whether or not I will participate in the advocacy day on the Hill. I don't know if I'll keep doing these events forever, but if there's a chance that someone else can be helped just by telling our story, that's something I need to suck up and do. There aren't many loud voices advocating for stomach cancer right now, and I really admire Debbie's resolve.  It's still a young foundation, and I'd like to try to support her. And I go back and read some posts in that stomach cancer Facebook group, and I see new people posting the same questions we were asking a year ago. Just looking for some hope, any hope. And I realize that I made the case myself, in this video that they put together from a 15 minute interview last May.

My year in music... emotional, sometimes depressing, hopefully cathartic music

One of my favorite things about December is that it's when all of the year-end music lists get published. I've always enjoyed checking lists from sites like Pitchfork, Spin, and Rolling Stone to compare how the music I liked gets ranked, and to find out about songs and artists that I might've missed throughout the year.  I tend to make my own lists too, usually my five favorite songs and albums of the year.  Over the past few weeks I've been thinking about my favorite music this year, and it's been taking me back through the tidal wave that was the past 12 months. (Obviously longer than that really, but I'm going to keep it to the calendar year for purposes of this post.) To me, one of the most appealing aspects of music has always been the fact that certain memories and emotions can be triggered by hearing a particular song.  Usually these are good memories.  Like songs that my high school band played and bring me back to summer of 98.  Or songs that were popular on the dance floor of Sigma Nu in the early 2000's.  Or songs that Meg and I heard together at a concert, in our standard pose with her standing right in front of me and my arms wrapped around her waist.

But sometimes songs trigger different memories.  I remember exactly which songs were playing when I got into two different car accidents in 2003 and 2004.  It's not a big deal, but I can't hear those songs without putting myself back into those moments.  I remember the album that was playing in my car when I had to leave work and go for a drive after I heard that my grandfather passed away in 2005.  I don't listen to that band much anymore, but when I do, those songs are forever linked to the emotions that I was feeling that day.  My favorite album last summer was by the Japandroids, an uptempo hard rock band.  In late June, that was pretty much the only album I was listening to.  But as we started to realize something was wrong with Meg, I remember driving in my car one day and emphatically turning the radio off.  I couldn't listen to something like that, and I probably didn't listen to that band for about a year.  A few months ago I tried putting the album on in my car again, and I just couldn't do it.  After a few seconds, I was reliving the summer of 2012.  I had to switch it to something else.

So what music will make me remember this year, and how?  I decided to make a list.  This isn't necessarily a list of all my favorite songs of the year (if so, there would probably be a few songs from Chvrches and Volcano Choir on here), but these are the ones that probably best tell the story of this year for me.

Phosphorescent - "Song for Zula"
I listen to SiriusXMU a lot.  I think they probably started playing this song last November or December, and it was on a lot through the beginning of this year.  It's a song of heartbreak, and even though it's 6 minutes long, the violin/synth melodies are captivating every step of the way.  Those notes continuously flirt but never completely approach a climax, and at the end of the song I still feel a longing for more, uncertain of where it's going to go.  That was an accurate representation of my winter.  There was uncertainty and anxiousness hanging over every moment.  I can't hear this song and not feel cold, because I'm reminded of that winter.  There were many days that it would play when I was alone in my car, and even though it usually brought me to tears, I couldn't turn it off.  But even though these memories are painful, I can still listen to it often.  Maybe because it reminds me of the last months I had Meg, and the fact that we had some beautiful moments in the face of uncertain adversity.  Speaking of Meg...

Emeli Sande - "Next to Me"
Pink - "Try"
I'm putting these two songs together, because they were picked my Meg, not me.  They were the last two songs that she randomly told me she liked.  When listening to music, I tended to focus more on melody and musical arrangement, and I think Meg focused more on lyrics.  These probably wouldn't be songs that I would've picked for her, but after listening to the lyrics I can understand why she liked each of these tracks.  (She actually was never a big fan of Pink, so that one was a shocker!)  When I hear them, she's obviously the first thing I think of.

Tom Petty - "Angel Dream"

Not all of the songs on this list are necessarily from 2013.  This list is more about the songs that will most remind me of this year.  I'd probably rather not have this song listed here, as I already have so many memories associated with it.  This was our wedding song.  Meg knew that I cared way more about picking the song than she did, so she left it up to me, although she obviously held some veto power.  I've always loved this song, ever since I saw the movie "She's the One" in the mid-90's.  However, as a song for our first dance, I didn't like the lyrics in the bridge, the part that goes "Sing a little song of loneliness...".  I felt like that didn't really make sense for a wedding.  So I spent a few months trying to come up with something else, but I kept coming back to this one.  "I found an angel, I found my place, I can only thank God it was not too late."  I couldn't find anything that I liked better than that.

Now the entire song makes complete and utter sense.  Way more than I ever wished it could.  I started listening to it a lot towards the end of February.  Then I started playing it on guitar, and singing it in my basement when no one was home.  I contemplated singing it to Meg at my band's scheduled gig in April.  I never got that chance, so I sang it to her a few times in the hospital that last week, while she was sleeping.  It's probably a good thing that I didn't pick a more popular wedding song, as it usually hits me pretty hard if it comes up in my iTunes when I'm not expecting it.  The good news is that it brings the happy with the sad.  But there's a lot there.

Anna Kendrick - "Cups"
I think this song started getting popular in April/May.  When I first heard it on the radio and the repeated chorus kicked in, I think I had to change the channel.  It was just bad timing - I wasn't ready for songs like that, both upbeat and emotional.  The video was cute though, and definitely made me think of Meg.  Eventually I got used to hearing it.  It doesn't hold as strong of an emotional pull over me as many of the other tracks on this list, but it will definitely remind me of the struggle with those conflicted feelings in the first months after we lost her.

Alabama Shakes - "Always Alright"
I had a really rough patch start towards the end of May.  The immediate shock had begun to wear off, and it was a struggle to get through each day.  Time felt like it was moving so slow.  I went to my 10 year reunion at UVA early in June, and like most other things, it was a roller-coaster.  One night I felt depressed, lost, and all alone, and then the next night I had a good time.  I was anxious to get away for a bit, and the next week was when I went to Colorado.

I purchased a bunch of new music for the trip.  I didn't know what I was going to be feeling like, so it was a random assortment.  Jefferson Airplane, The Replacements, Chvrches, Grimes, Purity Ring, The 1975, and Alabama Shakes.  "Always Alright" became my song for that trip.  I spent a lot of time just driving through the mountains, and it's a fantastic driving song.  The weather was great, the scenery was beautiful, and the beat and rhythm of that song kept me going.  It took till the end of the week before I started snapping out of that funk, and there have been a lot of dips back and forth since then.  But I can often go back to this song for a little southern rock pick-me-up.

The Middle East - "Blood"
Speaking of dips, the next one came quickly, early in July.  It made me realize that this wasn't going to be a simple 2 week episode that I could pull myself out of with a week off.  It was going to take time, and made me very wary of saying the words "I think I'm doing better."  That week, I remember not wanting to get out of bed at all.  I didn't want to talk to people, I was tired of the questions.  I stopped answering emails.

Then I got scared because I thought I would've been handling everything better by then.  I felt like I was regressing.  I went to bed on a Friday night feeling like crap, resigned to the fact that I was going to skip a friend's out of town birthday the next day.  I woke up in the morning, laid there for a bit, and felt like I literally had to drag myself out of bed.  I went for a jog, and while I was running, I made a decision.  I could spend the day home alone, feeling sorry for myself.  Or I could change my attitude, try to be upbeat, and have a good day.  It wasn't easy, but I went for it.  It ended up being fun, but when I got back home the next day, I was exhausted.  That night I watched the movie "Crazy, Stupid, Love."  It was otherwise forgettable, just a way to pass the time.  Until the last scene, when "Blood" started playing.  It plays softly through the last few minutes, then hits the melodic peak as the credits roll in.  In my fragile state, that song just struck an emotional chord with me.  I sat there for several minutes, rewinding the movie and playing it over a few times.  I Shazam'd it and bought the track from iTunes, and just put it on repeat while I laid on the floor, sobbing.

I don't even think I paid any attention to the lyrics, I was so transfixed by the melody.  Then a few weeks later, I was actually listening, and realized this was the last verse:

"It was the only woman you ever loved,
That got burnt by the sun too often when she was young.
And the cancer spread and it ran into her body and her blood,
And there's nothing you can do about it now."

The National - "I Need My Girl"

I bought this album in early September.  It's good, with several songs that I like, but this track jumped out at me.  I like the opening guitar lick, and I can feel the longing in his voice.  I put this song on when I'm really missing her and wishing she was there with me.  And these lyrics, in particular, strike a chord with me.

"I am good, I am grounded,
Davy says that I look taller.
But I can't get my head around it,
I keep feeling smaller and smaller.
I need my girl."

People would tell me that I was looking good, that I was handling it well.  I often wasn't feeling that way on the inside.

The Naked and Famous - "I Kill Giants"
Meg and I saw The Naked and Famous in concert twice in 2011.  I really liked their first album, it was probably my favorite of that year.  Under normal circumstances, that means I would've been listening to their follow up within a few days of its release this September.  But for some reason, I wasn't anxious to hear it.  Maybe because it was one of the last shows that we saw together.  I don't know.  But then the band posted the video for "I Kill Giants" on facebook at the end of October.  And the lead singer posted a note stating that she wrote the song about losing her mom to cancer.  So I listened to the album.  It's just ok.  "I Kill Giants" is probably my favorite song on it.  The chorus is simple, but the point is made.  "Why couldn't we save you?"  I had written a song not too long before this with a similar sentiment.  They manage to do it in an upbeat and melodic way.

Wild Cub - "Thunder Clatter"
Of everything on my list, this is the song that I most wish I could write.  It's happy, upbeat, danceable, and has great rhythms and melodies. There are so many elements to this song that I enjoy.  The multitude of percussive sections.  The prolonged note that provides a constant backdrop throughout the entire track.  The simple, yet catchy guitar riffs.  Everything happening in that little breakdown from 3:34-3:42.  And the gradual buildup to the eventual melodic culmination.

When I heard "Thunder Clatter" in the car for the first time, I was enjoying it.  Then that breakdown around 3:34 happened, and they started repeating those lines at the end.  Immediate fountain of tears.  The next time I heard it on the radio, they played an interview with the songwriter first, and he talked about how he wrote it for his wife.  I didn't know what song they were talking about until it started playing again. It's really just a beautiful, uplifting love song that should be happy in so many ways.  And it is, while at the same time being so sad for me.  It manages to trigger multiple emotions.  I've probably listened to this track forty times over the past two months, and I still get chills at the end.  It's the only song on this list that brings me to tears, while at the same time coaxing my body to keep moving, keep tapping my foot along with the beat.  Which is really what I'm trying to do with my life right now.  And for that reason, it's my favorite song of the year.

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.