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.

Discharge Day

Sometimes, I think of this space as just somewhere I go to put down my own thoughts.  I forget that others actually read this blog.  And yesterday, I got a phone call from a good friend, who was checking up on me because there was no update here.

I frequently use Facebook to disseminate info quickly to friends.  My wife and I have done that this time, plus used FB Messenger, text, e-mail, phone calls, etc., in the last week.  But, the blog sat here untouched, so here's an update for my 5 blog readers.  You guys actually get the details that others won't get.

In our pre-op meetings with the surgeon, the surgeon was very comfortable with the problem at hand.  The CT scan last Tuesday showed that the last two rounds of chemo had continued to help.  He also felt that the lesion "in" my liver wasn't really in the liver.  It was "on" it and that meant the liver did not need major resection.  

As for the bowel area, he thought there was a primary likelihood, and then two other possible findings - one better than expected and one way worse.  The expectation was that they would do some resectioning of the bowel.  I wrote about the options in my last post. 

I was warned that the cutting into the psoas muscle would cause some permanent (although allegedly harmless) loss of skin sensation on my right leg.

Pre-op went smoothly.  The doctor was there, ready to go.  Prep didn't take long at all, and I was allowed to walk into the OR - a first for me.  I hopped up onto the table, they put a mask over my face, told me to breathe deeply and I remember nothing for hours.  The first thing I remember after surgery is being in a lot of pain in the post anesthesia care unit (PACU).  I don't remember how all of the conversations went, but Fentanyl was not controlling my pain well.  Someone, possibly me, suggest Dilaudid as an alternative.  This switch provided near instant relief and we switched from the higher strength medication to the lower strength option.  I had a button that I could push as often as I wanted, but it only worked once every 10 minutes.  We then found out that the hospital was overbooked and they had no room for me.  By 10:00 or so, my wife left.  We still had half a dozen patients in PACU with a handful of nurses.

Oh yeah, before my wife left, she relayed news from the surgeon.  All of the tumors had come out in the best possible fashion.  He was able to get the tumor off the outside of the liver.  The two bowel tumors peeled right off and required no resection.  He was able to get good margins with the psoas tumor, although the numbness has been way more significant than I expected.  But, I lost very little healthy tissue and no organ tissue.

I was supposed to go to the 15th floor, but sometime after 11:00, a room opened up on the 16th floor.  They decided that was close enough and I went to my room.  I slept fitfully, but I had the pain button and got through the night OK.  In the morning, my breathing was a bit labored, but that wasn't fully unexpected.  But, my nurse told me that I had a pneumothorax and needed to have a chest tube installed.  This just hit me in the gut.  Chest tubes can be really painful.  I was alone in my room, waiting for my wife, waiting for the doctor, and contemplating trying to get up and walk out of the hospital to avoid the tube.  When the doctor showed up with the official news (the nurse had leaked it to me in advance), I explained my reticence, but also acknowledged the breathing problem.  The doctor explained that the tube I would be getting is a newer style of chest tube - much thinner and more comfortable than what I'd had before.

So, we headed downstairs to interventional radiology for procedure.  After getting the standard "twilight sedation" cocktail of Fentanyl and Versed, I was still talking a lot.  The anesthesiologist decided to "up her game" and added some propofol.  Ten minutes later, which felt like one second, I woke up and the chest tube was in.  It was never a problem, to be honest, and my breathing improved instantly.

My wife finally found me in the recovery room after the procedure.  She was in a panic.  She had gone to the 15th floor first.  They'd never heard of me, but finally tracked me down on the 16th floor.  There, they couldn't find me either, and finally told her I'd been taken downstairs for a "procedure".  But, they didn't tell her what the procedure was or why it was happening, and she was imagining I was back in major surgery.

From there, things started to improve.  I walked a bit that afternoon (Friday).  I got moved to the 15th floor and shared a room with a very nice gentleman from South Carolina and his wife.  Friday night, my wife stayed in the room as well.  Saturday morning, my wife flew home to take care of things there and I continued my recovery.  I found out that it was 14 laps to the mile walking in circles on the ward.  I did 3 sets of 10 laps on Saturday.

I was walking more and more each day and my night nurse asked me how many laps I'd done one night - maybe Monday night.  I told him I'd walked 64 laps that day, having built up from 30 a few days earlier.  He told me the "record" was 75 laps.  So, I walked 101 laps the next day, with my IV pole.  That's over 7 miles, and it took me about 3.5 hours total.  I knew then that things were over the hump.

I had chest x-ray's every day and the pneumothorax had fully resolved very early.  The tube stayed in for a while, but only because the IR team insisted.  My surgical team wanted it removed earlier, because they knew more details.  They had caused it by nicking my diaphragm with a scalpel during surgery, allowing some air into the pleural space.  They had also repaired the nick, so they weren't concerned about it returning.  The tube was finally pulled yesterday.

The original guess was that I'd be discharged Thursday (today), but I needed to pass some gas, have a bowel movement, and then eat some solid food before I could go.  I was bloated by gas for a few days as my bowels slowly came back to life.  I'd pass gas or have a bowel movement, and then lock up again.  Finally, on Wednesday morning, things really got going, and I moved a lot of gas out of my system.  I finally ate some food.  And then, we knew it was time to get me out of here.

That's a short version.  It appears that the surgery was a success, although I don't have the final pathology report yet.  But, liposarcoma is relentless, and there's no guarantee that I'll be disease free when I have my next CT scan in July.  For now, I want to heal, get back to my life, help my daughter decide on college for next year, and I'm looking forward to a family vacation to Lake Tahoe in June.  And maybe start training for the Ghost Train ultras in NH in October, although I am planning to hike rather than run most of my miles there.  Oh yeah, it's soon trout season.

I finished reading Atul Gawande's "Being Mortal" in the hospital this past week.  Reading that book while spending a week in one of the top cancer centers in the country, where some of the toughest cancer cases aggregate, has been eye opening.  You can be sure I'll be writing more about the book and the related experience in the near future.

The end of fun and games for a bit

I had a great weekend teaching skiing, and hanging out with friends.

On Monday, my wife and I flew to NYC and checked into a hostel at at YMCA in the Central Park West neighborhood.  We went out Monday night - a couple cocktails and then a really good (and very spicy) Chinese restaurant for dinner.

Tuesday morning was spent at Memorial Sloan Kettering Cancer Center.  I had some lab work (one needle).  Then, I had a CT scan with IV contrast (second needle).  After that, we met with my surgeon and three other members of his team.

He was happy with my CT scan results and with how the chemo has shrunk the tumors.  The one that had me most scared is not as bad as we'd thought.  We thought it was inside the liver, but he thinks it's outside and he should be able to remove that one without cutting the liver.  There are two spots along my digestive tract that worry him, one on the small intestine and one on my colon.  He is going to try to "peel" them out without re-sectioning anything, but he thinks he'll probably have to remove some of the colon.  The spot along my psoas muscle never really changed during chemo, but he's confident he can get clean margins there, although I'll lose a little bit of muscle.  And, he has a few other fat deposits that he wants to remove.

He said that those deposits might simply be fat, or they might be well-differentiated liposarcoma cells, and they need to come out either way.  Even if they are just fat tissue, he said they are where the cancer would be most likely to return.

So, he has a plan for the surgery.  However, there is one risk that we hadn't heard before yesterday.  He said that after they do the initial incision, it's possible that he will find lots of tiny tumors that are too small for the CT scan to identify.  If that happens, and he thinks it's a remote possibility, he wouldn't be able to remove all the tumors, so he would essentially close me up and remove none.  He said that would be a case where I was simply inoperable.  I won't go into the implications of what that would mean, but it would mean a grim diagnosis going forward.

Otherwise, he hopes to get everything he knows about, and then do another scan in 4 months or so.  He expects that I will be in the hospital for a week or so, and he'd like me to stay nearby until I can see him again on the 22nd.  On that day, he would remove the staples, go over the pathology report, and then send me home.  The social worker at the hospital was able to get me a room here at the YMCA hostel for the extra days in Manhattan.  My "little" trip to Manhattan is going to turn out to be 16-17 days.  Luckily, I've got my laptop with me and I have the kind of job where I can work remotely, although the first few days after surgery I won't be working at all.

After I saw the surgeon, I had my final pre-op testing (3rd needle stick of the day - why do I have a chest port if they won't use it?) with a nurse practitioner.  It was blood work, lots of questions, a few vital signs, and an EKG.

We were finally freed from the hospital about 1:30.  We spent the afternoon walking around Manhattan.  Ate a late lunch.  Met some friends.  Had an amazing dinner at a nearby Italian restaurant called Masseria Dei Vini - a place I'd recommend to anyone.  Saw Jersey Boys on Broadway.  Took a walk through Times Square.  Had a late night cocktail with my beautiful wife.  Even though I spent half the day at the hospital, it was still an amazing day.

It was also a reminder of how lucky I've been in my life.  I have great friends (I don't think we have paid for a dinner out in a few months right now), a great medical team, an amazing wife, and an understanding employer.

I wouldn't recommend cancer to anyone, especially not three different cancers in one couple in just over 2 years.  It's been a financial burden, it's created a lot of anxiety, and it's forced our kids to take on more responsibility than they should have to.  But, compared to so many people in the world, even with all of this going on in our lives, we are amazingly lucky.

Surgery is early tomorrow morning.  I'll update here as soon as the pain meds allow me to write coherently.

Genetic Testing and a Little Bit of CrossFit

After three primary cancers between us in the past 2.5 years, my wife and I met with a genetic counselor a few weeks ago.  I was the main target of the conversation, with 2 primary cancers of my own, but my wife has some significant family history of cancer, so we both went.  There were 2 reasons for doing this.

First, we wanted to know if either of us carried any genetic mutations that would predispose our children to increased cancer risk.  The fact that I had prostate cancer well before age 65, and that my uncle had the same cancer close to age 65 means my son is clearly at an increased future risk for this disease.

My wife and her father have both had melanoma, but they were different types and her father's melanoma occurred in his mid 80s - an age where it's no longer considered a genetic risk.

Secondly, we wanted to know if I had any mutations that would affect future treatment for my liposarcoma.  For example, a problem with the well known p53 oncogene could mean that the use of radiation to treat me now could greatly increase my risk of future cancers.  There are other genes that I won't list here that would allow doctors to target therapies for me in the future.

By the end of the visit, the genetic counselor thought I should have some genetic sequencing done, but that we shouldn't bother with my wife.  We followed her advice.  Yesterday, I got my results, and not a single genetic marker was out of order.  So, it sounds like I've simply been unlucky.  This is good news for me and for our children though, so I was happy to hear the results.

Now, there is still an area where sequencing might have some value for me.  When I have surgery next week, the surgeon could order genetic testing on the tumors he removes.  It's possible that the mutations in the tumors themselves could give us more information on how to treat any future recurrences.  But, I have no obvious flaws in some of the better known genes related to cancer, which is the best possible outcome, at least to the best of my knowledge.

I must admit that with another surgery looming, I've been a bit of a mess.  When I had surgery last September, I was sick, I was in pain, and I just wanted that damned tumor out of me.  Right now, I am most recovered from chemo, my workouts are improving, and I feel fine.  Yet, I am scheduled for major surgery in 8 days.  It just feels wrong to have such a significant surgery when I feel OK.  I've done it before with prostate cancer, and I still can't decide if that was the better treatment option or not.

On Monday, we fly to NYC.  I have medical appointments on Tuesday.  Wednesday, I have to do a bowel prep, and my surgery is on Thursday.  I'll probably be in the hospital for 4-7 days, depending on how fast my bowel functions return.  I know I need the surgery, but I can't seem to feel anything but anxiety and dread as the day gets closer.  There are also some "dignity" aspects to this whole process - a catheter, a CT scan with rectal contrast - that I'm dreading somewhat.  Yet, I know that skipping this surgery would likely be a death sentence, so I don't really have much choice.

In the interim, I'm doing as much as possible to take my mind off the surgery itself (except maybe writing this post).

Last night, we did a really tough workout at the gym, named for skier Ryan Hawks, who died after an accident in competition 5 years ago.  Our coach noted last night that I was the only person doing the workout (at that particular time of day) who had been a gym member when Ryan was also a member.  Ryan was an elite athlete who amazed me when he trained with us, and the workout is tough:

For time:

Row 1000 meters
50 deadlifts
50 thrusters
50 box jumps
50 burpees
50 per side lunges with a plate overhead
100 double unders

The last time I did this workout, I'd done only a few CF sessions in months, due to being sick and having surgery.  I scaled the weights and also scaled the reps to 30 each for the middle 5 movements.  Last night, still not being 100%, I scaled to 40 reps, and my time was nearly identical to last time.  My previous time doing this was right before I started chemo, so I was happy with a better outcome after months of chemo.

Monday night, we'd done a squat workout, but it was a deloading week, so things weren't too bad.  Then our main workout had been short after the squats.  Today, I'm pretty sore and my daughter's high school basketball team is playing in the state semi-finals, so I get a rest day.  They're playing the #2 seed, but they've already beaten #6 and #3, so maybe they have a chance tonight.  In the other bracket, #4 took out #1 on Monday, so there is a path for them to win it all.  If they can beat #2, #3, #4 and #6 as an eleventh seed, I think they will have earned the title.

After today, my goal will be to do as much CrossFit and skiing as I can before I leave for NYC.  And, looking at the weather for next week in NYC, I hope to get in some running or walking in Central Park and maybe a CF workout before my surgery.  Doing some training will at least take my mind off the impending surgery.