Thursday, March 24, 2016

A few highlights from a trip I wish I hadn't had to make

My 16 days in NYC are over.  I got my pathology report Tuesday morning and it was fairly positive.  The lesion on my liver wasn't cancer at the time it was removed.  It might have been cancer earlier, but if so, the chemo killed it.  The lesions on the bowel were well differentiated liposarcoma - the less aggressive form of the disease.  The only part that bothered me a bit was the section removed from the psoas muscle.  During chemo, that lesion had not seemed to shrink in size.  In fact, when it was removed, it was a long, thin lesion that measured 13 cm at its longest.  It was almost all well differentiated cells, but there was a small tumor of dedifferentiated cells  - about 1.5 cm at its largest dimension.  Those cells showed a "spindle cell morphology", but I don't think that's really any different than my previous operation and its pathology report.

So, the chemo, whose job was to attack the aggressive dedifferentiated cells, worked very well.  But, some dedifferentiated cells remained.  Luckily, the margins on the psoas were good, and the only close margin was close to the less aggressive cells.  The dedifferentiated segment did not extend to the edge of the removed tissue.

So, for now, I appear to be clear of disease.  None of the other fat cells removed showed any signs of liposarcoma.  I will return to NYC in late June for another CT scan, but there are no treatments planned between now and then.  If the chemo and surgery were successful in changing the nature of this disease from the dedifferentiated subtype to the well differentiated subtype, the future is a lot less scary.  For the most part, well differentiated tumors do not metastasize.  They grow more slowly.  They recur less frequently, in general, than dedifferentiated disease.  If I do have a recurrence of dedifferentiated cells, especially in the short term, well, we will worry about that if and when it happens.  But for now, things look pretty good.

In general, I am healing well.  On Tuesday morning, after my appointment, I easily walked from the hospital to Penn Station to catch my train home.  I didn't need to use a cab for a walk that spanned close to 30 city blocks, despite carrying a computer bag and dragging a suitcase.

All in all, I would have preferred to never make the trip.  I would have preferred to never have the surgery.  I'm still on pain medication, and I have some new numb spots on my skin that will remain permanently numb.  This includes nearly all of the front of my right quad.  I suppose I'll adapt to that over time, but it feels pretty weird right now.

So, what were the highlights of my trip?  Amazingly, there were quite a few.

My wife and I got into town on a Monday night.  That first night, despite some medical appointments in the morning, we got out for a couple cocktails at a fun little bar near our room.  From there, we used Yelp and found a nearby Szechuan restaurant that turned out to be very good.

The next day, we went for a long walk in Central Park after my morning appointments.  The weather was just beautiful.  That night, we met some of our ultrarunning friends for dinner and a show.  We started at a wonderful Italian restaurant called Masseria Dei Vini.  We all ended up sharing a number of plates, including a great grilled calamari salad, an amazing rabbit dish, a milk fed pork dish, and some Brussels sprouts and a polenta cake.  We even shared 2 desserts, although everyone was getting full by then.  After that, we ambled a few blocks to the theater to see Jersey Boys.  It was my first ever Broadway show, and I enjoyed it a lot.  I did have to laugh when my wife got a gin and tonic at the intermission and it cost $23.  But, I guess that's life in the big city.

After the show, we wandered around Times Square for a bit, knowing that the fun and games were over for a bit.  I spent Wednesday working remotely and getting ready for surgery (bowel prep).  My wife managed to get in some walking and spent the late afternoon in a wine bar.  I have to admit that I was jealous, and I even joked that wine was a "clear liquid", and I should be allowed to have some.  My wife got a simple dinner from Whole Foods.  She didn't want to ask me to sit in a restaurant when I couldn't have any food.

Thursday morning, we walked to the hospital, and the important part of the trip started.  I'll skip those details here.  By Saturday, I was up and walking during the day, although still dealing with pain.  On Sunday, two college friends stopped by for a while.  My one friend is very uncomfortable in hospitals, and they had a long drive home, so they couldn't stay long.  They did bring me a bag of "goodies" - some chocolates and a half bottle of whiskey.  I don't know what made them think that I would possibly be allowed to drink or even want to drink whiskey, but I accepted it graciously.  The chocolate did come in handy later in the trip.

Later that day, my dad showed up, and he visited with me on Sunday, Monday, and Tuesday.  He kept offering to get food for me, but I was still limited to clear liquids, and I was only drinking water or Gatorade.  Given the cost of staying in the city, he headed home after a Tuesday visit.

On Wednesday, I was allowed to start eating solid food again.  I think I had one piece of toast, a scrambled egg, and a few bites of sausage, but that was all I could handle.  Food got better every day, although my appetite is still way off a week later.  I'm still so swollen from the surgery that I feel full after eating very little food.

Thursday I was discharged and headed to my room at the upper west side YMCA.  That night, I found a local pizza place on Yelp, and had a pizza delivered.  I was truly amazed when it turned out that the pizza was barely edible.  The sauce was bland, the crust was terrible, and I could barely eat it.  How does this happen in NYC?

The next day may have been the highlight of the trip.  A good friend from high school, Scott, came to visit me.  He got a room in the Waldorf Astoria, a place he'd always wanted to stay, and offered me the second bed for the night.  We met around 5:30, and talked to the concierge about dinner.  We ended up at The Modern, a newer style French restaurant co-located in the Museum of Modern Art.  Our seat overlooked a courtyard full of the museum's art.  Here, I ate my first real food post-op, and had my first alcohol since surgery.  The food was insanely rich, and the prices were commensurate.  Scott asked me to pick a wine for dinner, and he'd already made it clear that he was paying for dinner.  This made the wine list even more daunting.  Scott and I both like good wine, but the starting price was essentially $100, decent wines seemed to go from $250 and up, and the most expensive bottle on the list was $17,500.  I managed to find a decent Bourgogne Rouge for $130, and I imagine the sommelier thought we were cheapskates.

I had a foie gras course, an amazing turbot with celeriac and black truffles, chicken breast with pecans and foie gras sauce, and then a cheese course.  It was amazing, but just too rich.  By the time we left, I felt bloated and my stomach was not happy about that kind of food so close to surgery.  Even in the luxurious beds of the Waldorf Astoria, I slept fitfully that night after so much rich food.

The next morning, we had a nice breakfast together, and then Scott had to head home for a school event with his daughter.  He had already missed an important Cub Scout event on Saturday to make the trip, and I really appreciated the visit.  Plus, he picked up the tab for absolutely everything.  If anyone ever tells you that absolutely everything about cancer sucks, don't believe them.  It's a great time to find out how much you really mean to the people in your life, and I've been absolutely blown away by how generous people have been with their time and money, just to spend time together through this ordeal.  Maybe I'm just extraordinarily lucky in who I have as friends, but the kindness I've received over the last 6 months is something I can never truly repay.  My hope is that over time, I can pay it forward to others in similar situations.

After Scott left, I had the day to myself.  I walked in Central Park for a long time.  I had a cocktail at a great little bar on the Upper East Side.  I walked some more.  And then, had a simple dinner from Whole Foods in my room.

The next day, Diane, the girlfriend of a skiing friend/mentor came to visit me.  We explored the Highline area for a few hours, before ending up at the Whiskey Bar near MSG for a drink and some food.  Her boyfriend was in VT, teaching skiing for the day, and we joked about being on a "date" without him.  It was a fun day, but about 6:00, I found myself getting tired.  We hopped in a cab and got me back to my room, and Diane headed home.  As I went to bed on Sunday night, all I could think was how close I was to getting home.

On Monday, I worked all day.  I made a reservation to go to Lincoln Park Steak for dinner.  It had great reviews on Yelp.  So far, Yelp had been right about 2 cocktail bars, the Szechuan restaurant, the Italian restaurant, and The Modern.  The reviewers had been very wrong about the pizza place, and regretfully, they were wrong about the steak house.  The service was bad (very aloof to the point of being cold), the food was bad, and I ended up eating only half of a steak, and then opting out of a free dessert.  It's tough to pay $150 for a meal that isn't good at all.  The beef itself was the only redeeming feature of the place, and even that failed to meet expectations.

From dinner, I headed to my room, packed up, and got to bed early.  I saw the doctor early the next morning, to have my staples removed and to get my pathology report, and that's where I started this post.

After getting on the 11:30 train (my last "meal" in NYC was a Haagen Daaz chocolate milk shake for lunch just before I got on the train), I was home in Vermont by 7:00.  I had a little bit of dinner and got to bed early.  By Wednesday, I was back in my office, trying to catch up on the work I'd missed.

I definitely managed to salvage a little bit of fun in my 2+ weeks in the big city.  Except for the night at the Waldorf Astoria, I either slept in a hospital bed or a very uncomfortable bed at the Y.  Despite a couple rich meals, I dropped about 10 pounds during my trip.  I actually walked a lot more, even after my surgery, than I average here in VT, where I seem to be sitting at my desk, doing CrossFit, skiing, or fishing most of the time.

I still have a lot of healing to do, but I'm encouraged by the results of the surgery.  A cure is still a long shot, but if recurrences can be limited and be only well differentiated disease, rather that dedifferentiated, I will be very happy.  Regretfully, I'm almost sure there will be more surgeries in the future, but for now, I am glad to be home, I'm glad to be free of obvious disease, I'm glad the surgery went well, and I'm going to focus on healing and getting back to the things I love, like CrossFit and the impending opening of trout season.

While I would not wish this disease on anyone, I can also see many positives that have arisen from it.  I have the best friends I could have ever imagined.  My wife has been my rock, and I am especially looking forward to celebrating our 30th wedding anniversary this summer.  And even my kids, as aloof as they can be, were clearly worried about me and glad to see me come through this so well.  I really couldn't be happier right now.

1 comment:

Harriet said...

Thanks for the report on "the vacation that you wish you didn't have to take".

I am glad that there were so many positives.