Thursday, December 29, 2016

A few good days in a row

Monday, the day after Christmas, I hopped on the treadmill for a 90 minute walk.  After our recent rain and freeze/thaw/freeze cycles, walking outside didn't seem safe, and it was a chilly day anyway.  The walk was pretty basic - a bit over 4 miles in the 90 minutes, but the aftermath was surprising.

I woke up on Tuesday sore all over from just walking.  I'm assuming that I'm still seeing side effects from the radiation, because every workout for weeks has had this effect.  Despite being tired and sore, I made it to the gym Tuesday night.  I started my workout with 10x3 back squats at 135#.  This is kind of pathetic, given that I lifted 320# recently, but it's what my body will tolerate.  Last week, one workout of squats at 113# destroyed me for the week, so even this level worried me.  But, it went reasonably OK.

After squats, we did an AMRAP of wall balls, light deadlifts and ring rows.  I have to admit that I really struggled through this and hated every second of it.  But, I finished, and it was one of those days where I was glad that I had worked out.  I rarely hate a workout, but this day was an exception.  Luckily, I stuck with it and completed it, even though it wasn't fun.

Yesterday, I wasn't as sore as I expected, so I returned to CF - my first time doing 2 days in a row since November.  We started with strict presses and push presses.  Then, we moved on to 3 x 5 minute working sets.  Each round had a "buy-in" of weighed box step-ups and DB shoulder to overhead movements, followed by max burpees in the remaining time.  Compared to the rest of the class, my burpee total was pathetic, but I did manage to get through it and keep moving.  The first round had 30 reps of each of the first 2 movements and I got 6 burpees.  The second set was 20, 20 and 16 burpees, and the last set was 10, 10 and 26 burpees for a final score of 48 burpees.  Most others had way more than 48 burpees in just the last set, and one person had a total of 170 burpees.  If I had done only burpees through the 21 minutes of this workout, with no rest and no other movements, I don't know if I could have done 170 burpees.  I have a long way to go to get back to where I was.  With surgery looming in February, I need to get myself back into decent shape quickly.

Today, we are expecting our first big winter storm in a couple winters.  I have to pick up a new part for the snowblower at lunchtime.  We are skipping CF so we can get home before the heaviest snow starts to accrue.  I am hoping to do CF tomorrow, at an easy level, before I ski all weekend.  The snow storm should really help the conditions on the mountain tremendously.

Thursday, December 22, 2016

Trouble finding my rhythm

Well, my wife would say I've always been rhythmically challenged, especially on the dance floor.  But, it's a different kind of rhythm that's eluding me, really since late September.  Late October is when my wife and I did the Ghost Train ultra, covering 45 miles in 28+ hours, but I started tapering for that event at the end of September.

Since then, I simply can't seem to find a consistency in my training.  Yes, I had three trips to NYC for treatment.  The treatment and aftermath of radiation cost me 3 weeks of gym time.  But, it seems that every time I jump back into CF, I trash my body so badly that I am left incapacitated for days.

This week, for example, we started the week with front squats and back squats on Monday night.  When healthy, I would do this workout at 185 pounds, a testament to my current weak front squat (My front squat PR is 305#, back squat is 375#, and I can only do 185 for mixed sets???).  But, after three weeks away from the gym, I backed way, way off, and did the squats at 113# - crazy low weight for me.

By Tuesday night, my hammies were sore, but I managed to walk on the treadmill.  By yesterday, I could barely walk, and I pulled my left hamstring during a warm-up at the gym, doing unweighted split squats.  I knew I needed to be careful on that movement, and I thought I was being careful, but I tweaked the muscle anyway.  So, I sat out the workout.  Today, I can barely walk again, so I doubt that I can do CF.  Even a walk on the treadmill will be tough, to be honest.

Every week seems to go like this.  No matter how easy  I go, I trash myself.  Then, I miss some days.  Then, when I return, my conditioning is even worse, and I trash myself again.  I can't seem to find a way to train at a moderate level so that I can find some consistency.

Squatting seems to be the core issue, and we always squat on Mondays.  Recently, squatting comes after a weekend of skiing, and by Tuesday, I'm shot.   I love to squat, and I want to squat at least once per week.  But, without some consistency, I can't do it without trashing my legs for days.  Right now, I haven't done CF even 3 times in one week since September.  I've been walking a lot, but walking is not proper preparation for CF.  So, my inconsistency feeds on itself, and I feel like I'm going backwards.

Between my trips to MSKCC last month and this month, the holidays, a business trip, and other family obligations, I simply can't find that rhythm.

Right now, I'm probably 7-8 weeks away from my next surgery, and I need to use that time to get stronger and more fit, so I'm as fit as possible heading into the surgery.  And, I'm not doing a very good job right now.  I must fix that!

Monday, December 19, 2016

Getting back to life

Last Thursday was a milestone for me.  After taking a sick day on Wednesday due to nausea and cramping, I ate lunch on Thursday.  It was the first time I felt good enough to eat lunch in a few days.  From there, each day has gotten better, although I'm still taking anti-nausea meds.

However, I'm no longer skipping meals (good or bad, I'm not sure), and I'm able to sleep through the night without being awakened by nausea.

I managed to ski both days this weekend, although I didn't cover much terrain on Sunday due to crazy weather.  I left my house early due to icy roads and an air temperature of 30F.  Driving was slow, and I had to use my alternate (longer) route to Sugarbush.  As I got close to the mountain, the air temperature went from 30F to 46F in a matter of minutes.  It started to rain hard and the winds picked up.

Only 2 hours later, the opposite happened, as the temperatures started to plummet again.  By the time I left the mountain, only 3 hours after I arrived, it was 36F and snowing.  On my drive home, the temperature dropped to 31F and it was 0F by this morning.  So, in 48 hours, we went from 0F to 46F to 0F.

Regretfully, the brief warm period and the pouring rain that came with it really destroyed our amazing start to ski season.  Natural snow trails that had been amazing are suddenly a mix of ice and dirt, and they are mostly closed.  The trails that aren't closed and that aren't groomed are now bulletproof ice.

Such is winter in New England (yeah, it's not technically winter yet).

But, the good thing is that I was able to ski 2 days in a row after a very rough week.  Last night, I even felt up to having a little Champagne as we decorated our Christmas tree.  We had waited longer than normal to put up a tree this year, wanting to wait until our daughter was home from Syracuse after her first semester as a freshman.

Tonight, I plan to do CrossFit.  It is a squat night, and after 20 days away from the barbell, I will lift very lightly.  My muscles might be strong enough to lift heavier than I will, but if I do that, I will be too sore to even walk for the rest of the week.  So, I plan to ease back into CF these next 2 weeks.

Lastly, speaking of CrossFit, members of our gym set up a fundraiser for my wife and me, to help us pay our transportation costs for my treatments at Sloan Kettering.  The response has been overwhelming in just one week.  At times, the kindness of others has honestly left me in tears.  I'm not sure what I've ever done to deserve such kindness, and I often say that it's my wife that people are supporting, rather than me.  I know that's not really true, but I have been touched beyond belief by all of the kindness we have received in the past 15 months.

While I would never say that I'm a religious person, the only word I can think of to describe how I feel is blessed.  We've had so much help from friends, ranging from a few great meals in Manhattan, a Broadway show, a night in the Waldorf Astoria with a high school friend (well, truly a lifelong friend), help from my brother, help from my skiing co-workers, and now, help from our gym friends (and others who have contributed so much).

I am reminded of a quote from Edgar Allen Poe's Mesmeric Revelation, and I'll finish with that:

"Never to have suffered would never to have been blessed."

Thursday, December 15, 2016

Radiation Aftermath - Tougher than I Expected

I finished radiation last Wednesday, 12/7.  I expected that the nausea would get worse for a couple days and then get better.  The radiologist told me he thought I would be back to normal by a week after treatment ended.  Regretfully, that hasn't happened.

I got home from NYC last Thursday evening.  I had been planning to work at home on Friday, but I felt pretty good, and I went to the office for the day.  That day went so well that I taught skiing that Saturday, and everything has been in freefall since then.

I got through the day of teaching skiing, but it took a lot out of me.  By 2:30 in the afternoon, I was done.  Simply depleted.  I had walked a lot in my ski boots, which is never easy, and a lot of that was on beginner skiing terrain - uphill and downhill.  I hiked up the beginner slope 4 or 5 times during the day.  By the time my FitBit told me I'd hit 10000 steps for the day, I was toast.

I had to skip a planned training session at 3:15. I was dealing with some nasty muscle cramps in the two muscle walls where most of the radiation entered my body.  I chugged a liter of water and this made things better, but not good.  I wanted to stay and have some beers with my friends, but after a short period of time with my friends, I had to head home.

The next morning, I felt so run down that I called in sick.  I slept in, did a little bit of winterization work around the house, tied some flies, and that was it.  The day was a wash.

On Monday, the nausea was worse.  I went to the office, but I couldn't even consider eating anything.  I did manage to walk on the treadmill at the gym while my wife trained, but 2.8 mph was hard.  I did this for 55 minutes, and I was exhausted.  On the way home, I had some medical MJ, and that controlled the nausea so I could eat some food at least.

On Tuesday, the nausea was worse, and the day was a repeat of Monday, except I napped at the gym rather than walking on the treadmill.  I had to use medical MJ again just so I could eat something.  Overnight that night, I started to get some abdominal cramping, and this led to me calling in sick to my day job on Wednesday.

On Wednesday, I slept a lot, tied a few flies, and I took a lot of pain medicine for the cramping I was dealing with.  I managed to eat a bowl of soup for lunch, I drank some ginger ale, and I ate some popcorn for dinner.

The cramping is slightly better today, but I still had to take pain medicine as soon as I got out of bed.  I had a medical appointment in the morning that I didn't want to miss.  That doctor was happy with how things are going for me, but the cramping and nausea are not his concerns.

So now, I'm in my office.  I couldn't drink coffee.  I haven't eaten anything.  And, with the weekend approaching, I'm curious if I'll be able to teach skiing or not.

Clearly, the radiologist was off a bit in his recovery timeline.  But, I've got the meds I need, and I just need to wait it out.  I was hoping I'd be training in the gym by now, but I'm far from ready for that.  So, I'll just continue to wait things out.  I'm probably already pushing more than I should, so perhaps a couple more complete rest days is what I really need.  I'd really like to ski this weekend, but my body's recovery comes first.

Thursday, December 8, 2016

Radiation done - long blow by blow of trip to NYC

I can't say that it's been fun, but my radiation treatments are now over, and I'm currently on the train back to Vermont.  I didn't do any formal workouts for the past 9 days, but the weather in NYC cooperated, and I walked anywhere from 11K to 25K steps every day in the city.  In my 7 full days in the city, I walked 108K steps - one of my best weeks ever, and well over 40 miles.

I got to the city last Wednesday, with radiation scheduled to start on Thursday.  The weather on Wednesday was rainy, but not horrible, so with my computer bag, a suitcase on wheels, and an umbrella, I walked from Penn Station to my room on West 63rd.  It's normally a 35 minute walk, but in the rain, and carrying so much stuff, I seemed to miss every light, and it took me 45 minutes or so to go 30 blocks.  I got to my room, grabbed a quick dinner, and then got to sleep.

The next day, I was up early.  I have my routine in NYC down pretty well for these extended stays with outpatient treatment.  I get up, get some coffee, and I get straight to work.  I did that the first day, and then headed to my first treatment mid-afternoon.  By cutting through Central Park, it takes me about 40 minutes to walk from my room to the hospital.

On that first day, I met with the doctor for a while and then did the treatment.  The treatment is kind of weird.  The radiation "machine" moves around a lot, going after the tumor from multiple directions.  They put me into a mold that we'd made the week before and an abdominal binder to stop my breathing from moving the tumor too much.  The tolerance for the tumor moving is 0.2 cm, so they crank that thing pretty tight.  They strapped me in, asked what music I wanted to hear (they use Pandora, and I just gave them a band to seed the Pandora feed), turn on the music, and 15-30 minutes later, I'm done.

That first day, I selected the Dead, mostly out of my excitement that Dead and Company have announced they will be touring again next summer.  I honestly felt nothing at all from the treatment, and afterward, I headed to one of my favorite watering holes on the upper east side - The Bar Room.  But, I had an empty stomach, I'd taken some pain medication before the treatment, and after just a couple cocktails, I felt like I'd had too much.  So, I headed back to my room, ordered a pizza, talked to my sister and my wife for a while, and got some sleep.

The next day was similar, although I did start to feel the nausea I'd been warned about.  Instead of taking Zofran for just the treatments, I started taking it every 8 hours - the maximum dose.  After Friday's treatment (David Bowie was my musical choice this day), I wandered downtown for a while - down 5th Avenue to Rockefeller Plaza.  It was a zoo - the worst pedestrian traffic jam I've ever seen.  Eventually, I'd seen everything I wanted to see and I headed back to my room, grabbing some food to go from the Whole Foods in Lincoln Center.

I got 11.5 hours of sleep that night, the first sign that fatigue would be affecting me.  And, I was pretty nauseous when I woke up, but after some Zofran, I was able to drink some coffee, although food seemed totally unappealing.  Around noon, I headed out for a long walk through the northern end of Central Park and eventually made my way to Penn Station, to meet my wife, who was visiting for the weekend.  I keep trying to spare her as much of this as I can, but she wants to be there for me, and I can't believe how lucky I am.  Thirty years after we said our wedding vows, and three years after cancer began to really test some of them, we seem to be doing better than ever.  Well, our marriage is doing fine.  My health is the real issue.

We walked back to our room, grabbed an early dinner, and went searching for a place to watch the B1G conference championship game.  We tried to go to a place that was hosting a PSU alumni group, but without a reservation, they had no room for us.  Yelp saved us and we found an Irish/sports bar in the Hell's Kitchen neighborhood.  When Penn State fell behind 28-7, the mostly Penn State crowd was pretty quiet, but things got boisterous as Penn State stormed back.  I was careful with alcohol - sipping beer very, very slowly, to not upset my stomach.  We even ordered some wings late in the third quarter, which turned out to be a mistake.

After the game, we headed back to the room and my wife fell right asleep.  I, on the other hand, was having serious nausea problems.  I knew that I didn't want to throw up spicy chicken wings, but I wasn't in control.  With great confidence, I can tell you that buffalo wing hot sauce in the nasal cavities is highly unpleasant.  Eventually, after getting sick, I was able to fall asleep.

Regretfully, the vomiting continued Sunday morning, and I sent a note to the hospital, asking if they could add some compazine to my Zofran and Ativan.  I probably should have had them page the radiation oncologist on call, because it took until Tuesday morning for me to get the compazine.  Luckily, the nausea calmed down on Sunday, and my wife and I had a great day.

We had a late lunch at Shake Shack, a NYC institution.  It was really good, although $5 for a basic burger, and a $5 Vincent Vega-esque milk shake was a bit pricey,   But, the food sat well, and we headed to Macy's.  I had forgotten how huge the Macy's is in NYC.  My wife wanted a new pair of dress boots, and they must have had over a 1000 options.  After one full loop of the second floor, I opted to just sit down, and have my wife text me when she'd found something, since I'm the one with a Macy's card.  Finally, she found something, I paid for it, we got my son a Christmas present, and we got out of there.

By now, it was getting dark, so we headed to Rockefeller Plaza to see the big Christmas Tree.  I quickly realized that the crowds were worse than Friday, so I started looking for an alternate way in, and luckily, I found one.  We got some photos, and then simply had to get out of the crowds.  By now, I was exhausted and my wife was thirsty, so we found a place for her to get a cocktail.  Then more walking towards the room, and I ran out of energy again, but this time, we were right at a Champagne bar.  My wife is a huge Champagne fan, so we dropped in.  It turned out to be some sort of event - women drinking Champagne and drawing a variety of models.  But, the models were in various forms of undress and in various BDSM gear and poses, so it was, uh, interesting.  After a little Champagne, we stopped at Whole Foods to get some dinner, and called it a night.

The next day, my wife was heading home and I had to work, so it was a low key day.  We had thought of going to Carnegie Deli, which is closing at the end of this month, but the nausea was too bad for me to consider it too seriously.

So, about noon, my wife headed to Penn Station. About 5:00, I headed out, planning to stop at the Dean and Deluca store on upper Madison.  I have been a customer of theirs for years, but I'd never been in a store.  I ended up buying one Christmas gift before heading to my 6:15 radiation appointment.  Everything lined up perfectly this night, and before the third Janis Joplin song was over, I was done.  I got them to page the radiologist to make sure I would get compazine, and then I was gone.  I picked up some beef chow fun at a popular Chinese takeout joint, and it was amazingly good.  In Vermont, I only get this dish when I make it myself, and I can only make it when I'm lucky enough to find the correct noodles.  This random restaurant's version was outstanding and it sat well in my stomach.

The next morning, my first goal was to pick up the compazine, and what a difference it made.  During chemo, Zofran had been the key to my nausea, but for some reason, during radiation, compazine made all the difference.  My Monday radiation went quickly, and my stomach felt great afterward.  (I requested Talking Heads on tuesday).  After I finished working for the day, I went to Rosa Mexicano by Lincoln Center for dinner.  I knew my stomach was a lot better if Mexican food sounded good.  And, this place was stunningly good.  Not cheap, but really, really good.

I told my waiter that the place would easily be the best Mexican restaurant in the entire state of Vermont if they opened a branch there.  And, I liked it so much, I made a reservation to come back the next night.

On Wednesday, I had to meet the radiologist before my treatment.  He was gushing about how well the radiation had gone, about how well they'd been able to isolate the tumor.  His attitude left me wondering if he thought things were in doubt beforehand and they'd just glossed over that piece of information.  I chose the Dead again, did the final treatment, and we were done.  I go back to see the surgeon and the radiation oncologist at the end of January.  We will likely set a date for surgery during that visit.

After one more trip to Rosa Mexicano, I got to bed early.  I got up early, packed, had some coffee, showered, worked a bit, and walked to Penn Station.  My train was a bit late, but not too bad.

And, that catches me up to right now.  While I still have medical appointments in VT, I'm done in NYC until late January and then a likely surgery date in February.

For now, I'm hoping the nausea calms down a bit more in the coming days.  I'm hoping I feel good enough to ski this weekend.

Monday, November 28, 2016

Skiing - Day One

I could have skied earlier in the year.  I could have skied a month ago when KMart opened.  But, for a while, I was waiting for my new skis and bindings to be set up.  I bought the Nordica Enforcer 93 and the Marker Schizo binding.  A few weeks ago, I finally got the skis back.  But, I still had to do my pre-season orientation at Sugarbush, so I didn't ski that weekend.

The next weekend, some friends were going to KMart, but it was on Sunday, and I had to be on a train to NYC, so I had to pass.

Sugarbush opened the day before Thanksgiving.  Somehow, work won that day.  Family won on Thanksgiving Day.  Work the next day, plus we regretfully had to deal with our older dog passing away overnight.  Then, it was Saturday.  I slept in a bit after a few long days.  I walked the younger dog in mud and muck.  And then, I succumbed to college football.

But yesterday, I was scheduled to work.  At Sugarbush.  It would also be a chance to meet our new ski school director.  I can't even recall how many ski school directors I've worked for in the past 16 years.  I was hired by a guy named Tim, but he was replaced by Bill, before that season ever started. Then, Bill lost the job, and we had a handful of short-timers.  Some were internal, some were attempts to leverage some of the "historical" figures in Sugarbush history - an Olympian and a star of extreme skiing films.  One guy, who I think was named Ed, didn't last long, and his best advice all winter was to keep your gas tank full, in case you got stuck in a snow bank.  I don't think I ever saw him ski at all.  Then, Bill came back.  Then, Russ, who I had a good relationship with, but he only made it 4 years.  But now, we have a very well respected new ski school director.  He came to SB from Mad River Glen, but he's been involved in PSIA for many years, at the top levels.  He's a great skier, a great teacher, and he's been very successful running few other ski schools.

And, I have to say, I wasn't disappointed.  Yesterday was a day for our staff trainers to ski together and talk about how we are going to train the rest of the staff this year.  So, we only had very experienced instructors, and Terry had us start with some super simple movements.  Then another.  And another.  I was skiing for the first time on my my skis, but as I felt more comfortable on the skis, Terry's input clicked.  I kept waiting for the half dozen other things to try, that I fully expected.

Regretfully, this is a hallmark of teaching skiing, especially at the upper end.  You give someone some good info.  Add a bit more.  A bit more.  And, rather than stopping there, you just keep piling on new info and new things to try.  At this point, I often feel overloaded and it's almost like I've lost my ability to comprehend anything, and my skiing goes to crap.

But, Terry didn't do that.  After just a couple simple concepts, he stopped  We did play with variations on the theme as the day progressed.  Terry recognized that many people hadn't skied before yesterday, and let people head home as soon as they felt tired.  Conditions were a bit challenging, with some snow guns throwing wet snow at us, and sticky snow on the ground.  On day one, the goal is to get re-acquainted with movements we haven't made for months, dial in new equipment, remember a few key points, and try to put it all together.  All day, I didn't hear Terry make one negative comment about people's skiing.  He offered simple advice at times, and he did ask hard questions, but no one was made to feel as if their skiing wasn't good enough.  And, to be honest, given the group I was with, I always expect that to happen to me.

Most of the other trainers at Sugarbush have been there much longer than I have, or they have a higher certification level from PSIA than I have.  I feel like the least skilled staff trainer out there, and I always feel a bit self conscious in that group.  But, Terry made me feel at home as he saw me make improvements in my my movements, and he made sure I knew he saw them.

All in all, it was a very good day.  I like my new skis.  I like my new ski school director.  I already like my direct supervisor.  And, the mountain is fantastic about working around my current health issues, to allow me to contribute how I can, when I can.

I have to miss next weekend, when we will train most of our staff for the season.  But, if the radiation this week doesn't take too much out of me, I hope I can ski the following weekend, probably helping out some younger coaches as they get placed with young students for the first time.

I have to admit that before my last scan, I told my wife that I would simply sell my new skis if I got bad news.  And, I was serious about doing that.  But, my wife recognizes that skiing is good for me mentally.  It's something I love and something I want to do, even despite everything else going on right now.  She fully supported me being there yesterday.

And, on another note, I leave for Manhattan on Wednesday and my radiation starts on Thursday.  Hopefully, I will get through it OK, but it kind of scares me that I need to be prepared with pain meds, anti-anxiety meds, anti-nausea meds, and I've had lots of warnings that high dose radiation can hit people pretty hard.  So, we will see how that goes.

For now, I'm just going to bask in the glow of a day of fun skiing, with my friends, at a mountain that I love.  As much as I love fly fishing and the warmer months, I also love skiing, teaching skiing, and I've got some amazing friends at the mountain.  As long as I breathe, I want to be part of the ski school.  Well, at least as long as I can adequately turn a pair of skis into the next turn.

Tuesday, November 22, 2016

Next Steps

I spent the day in NYC yesterday.  And no, I wasn't interviewing for a Cabinet position in the Trump administration, although I did walk past the security people and the crowds mobbing the sidewalk on either side of the street in front of the Trump Palace, or whatever he calls that place.

I spent the day at Sloan Kettering doing what is known as a radiation simulation.  It involved a number of scans, some custom torture devices, some tiny little markers tattooed on my skin, and a schedule for the actual treatments.

I was hoping we would start on Monday, 12/5.  Instead, the plan is to start on 12/1.  This means my treatments will go over a calendar week, even though there won't be any treatments on the weekend itself, but I will stay in NYC for the weekend.

I'm currently working with social services at the hospital, trying to find some lodging I can afford for a week in NYC.  All of the travel to Sloan Kettering this year, treatment costs, plus hotel rooms, and meals in NYC have taken a financial toll, and I simply can't stay in a commercial hotel for a week.  So, they are looking into some options, one of which might be free.  The second choice is a pretty crappy place, but it's tolerable and only $60 per night.

So, if all goes as planned, I will ride the train to NYC next Wednesday.  I will have radiation treatments on Thursday and Friday.  Then, I'll get the weekend off, and have more treatments on Monday, Tuesday and Wednesday.  I would come back home on Thursday, the 8th.

Liposarcoma in the retroperitoneal space does not respond well to typical radiation, but it does respond better to high dose radiation, which is what we will be doing.  In particular, it will be a form of radiation called IGRT - Image Guided Radiation Therapy.  I will get the same amount of radiation in 5 treatments that others might get in 30-40 treatments.  Of course, that kind of dose comes with a slew of side effects - pain, nausea, burnt/irritated skin, and extreme fatigue.  Plus, given the location of the lesion, they need to be very careful not to damage a section of colon that they don't think they can completely avoid and they also need to avoid hitting the liver.

I'm most afraid of the fatigue, at least in the short term.  In the short term, the risk to the colon is real, and if that tissue burns through, it would be a medical emergency probably requiring surgery.  But, the radiation oncologist thinks that with the high tech IGRT, the risk is about 5% of that happening.

I would like to hope that my fitness level will help me out, but I was warned yesterday by a nurse that the fatigue is very real, and the nausea is very prevalent, and I should expect to lose some weight and feel tired for a few weeks.  With ski season starting this weekend, that's not great news.  But, I have very limited options right now, so this is what I will deal with.

Six weeks after radiation ends, I will return to NYC for another CT scan.  In some cases, the radiation kills the tumor completely.  In some cases, it doesn't, or they can't tell from the scan.  If the tumor still seems potentially viable in any way, they will schedule me for surgery to remove what remains.  That will mean another 1-2 weeks in NYC, with 5 or so nights in the hospital.  But, for now, that's an unknown, and I'm not going to worry about it.

My goal for right now is to deal with the radiation, recover from that, and get back to training and skiing as quickly as possible.

Tuesday, November 15, 2016

Just crushed

It would be easy to describe last Tuesday as the worst day in my life up until this point.  Not only did the election go in a direction that I still find unimaginable, but I found out that my liposarcoma has returned.

I don't want this to be a political post, but my biggest fear about the election was tied directly to the ACA.  While the ACA hasn't really been affordable for me (we have spent over $30K on premiums plus out of pocket expenses in 2 of the last 4 years), I have taken solace in the fact the people who couldn't get insurance before were getting it now.  My insurance company doesn't want to cover me (two primary cancers in the past 3 years) and they don't want to cover my wife (another primary cancer in between my two diagnoses) and they most likely don't want to cover my children, who are both 18+.

To get the care that I need for a very rare cancer, I am doing most of my treatment at Sloan Kettering in NYC.  While this is expensive for me - lots of travel expenses - I have access to docs there who truly understand the cancer I'm dealing with now.  If I could only go to hospitals here in VT, I'd have little hope of a positive outcome.  It's not that they are bad docs, but rather that my diagnosis is so rare and so dangerous that I need true specialists in this disease, and that's not what I have here in VT.

So, if the ACA is repealed completely and not replaced, I'm likely a dead man.  If the pre-existing conditions clause is not maintained, I'm a dead man.  So, I had a very vested interest in the outcome of the election.

Regretfully, my new tumor is at a tough spot - behind the liver, near the spine, near the diaphragm, and possibly entwined with the inferior vena cava.  This would be very difficult to simply cut out, so my surgeon wants me to do a week of high dose radiation, wait six weeks, and then have surgery.  He said it's still a significant surgery, but if no other lesions show up, hopefully, I will have a smaller incision and easier recovery than the last 2 times.

It also means that for the 3rd time in 4 years, my ski season will be interrupted, and I will be unable to perform my normal job as an instructor.  I will still ski and teach, but I'll simply have to fit in as many days as possible.

Most likely, I'll be in NY for a radiation simulation next week.  Then, radiation the week of 12/5.  Then, a break for 6 weeks or so.  Another CT scan.  And then, most likely, another surgery in late January.

It's a tough blow.  It probably means that any modest hopes I had for a cure are now gone.  Maybe, but it's just not very likely.  The surgeon is confident that we can still achieve some sort of longer-term remission, but I'm skeptical.  This does happen for some people, but not for others.

My biggest concern, to be honest, is how each round of treatment just chips away at me, both physically and mentally.  Each round creates a few more permanent side effects.  Each round shakes me up mentally.  And, for me, each round gets tougher to take.  In the past 3 years, I've now had a major biopsy, laparoscopic surgery, major surgery, 4 rounds of inpatient chemo, another major surgery, and I'm now looking at a week of radiation and then another surgery.  Mentally, I simply feel beaten down.  I've talked about just skipping the treatments, although I do know very well what that would mean.

So, for now, I'd say I'm down, but I'm not out.  I will fight on.

Thursday, October 27, 2016

Ghost Train Race Report

I don't even remember the last time I used the phrase "Race Report" in a subject line.  My last marathon was 5 years ago, and my last ultra was a DNF (timed out midway) in a 50K - 6 years ago.

Last winter, during chemo, I floated the idea of an ultra to my wife.  There was (and still is) so much uncertainty related to my liposarcoma, and I needed to plan something.  Mentally, I needed to know that I could still plan ahead in my life, prepare for something, and have it happen.  It might not make sense to most people, but I'm sure every cancer patient would understand.

My first thought was to do the 50K at the Maine Track Club 50K/50M.  This has been a favorite race of mine in the past, but I found out that it's now been discontinued.  My thought was that I could do 50K in the 50 mile time limit, so I could finish.  With that race gone, my options seemed more limited.

I briefly considered A Race For The Ages, but that was more than I wanted to do.  I did not want a race that would allow me to accumulate miles for 54 hours.

Finally, a friend mentioned Ghost Train in Brookline, NH.  The format is similar to most 100 milers, and many of the people are there to run 100 miles.  But, it's on a 7.5 mile stretch of rail trail, and you do out-and-backs on the trail.  For this race, you can choose to do 30 miles, 45, 60, 75, 90 or 100.  It might even be possible to shoot for 105 or 120 or more, but I didn't really look into that option.

I told my wife about it and said that I thought 30 miles would be a good goal.  I believe that it was my wife who suggested that with a 30 hour time limit, 45 miles should be possible.  And, she offered to do it with me.  My wife has done 3 marathons - 2 on trail and 1 on the road.  She has paced 30 miles at the VT100.  But, she had never done an ultra.  At the time, I felt like she was simply trying to encourage me, and I honestly never expected her to do the race.

So, last February, I contacted the RD so we could reserve one of the camping spaces at the start/finish area.  He said he was surprised by my early request, because registration wasn't even open.  I explained the cancer story behind my request, and he responded quickly that we had a camping spot.

And then, I screwed up.  I didn't sign up for the race right away.  And, it filled up before I tried to enter.  Luckily, there is a waiting list and we were told it was very likely we would get in if we signed up immediately for the waiting list.  In August, we got confirmation that we were in the race.

So, after 6 years away from ultras, and not being much of a runner any more, how does one train for an ultra.  In one respect, I could say we didn't.  That would be sort of true.  My longest day was a 5 mile walk/run followed by a 3 mile dog walk.  My wife's longest day was a hike of Mt. Hunger that took us a few hours for just over 4 hilly miles.  I did that hike as well.

But, we did CrossFit all the time, we were doing a weekly aerobic capacity class at CF, and we did get out walking as much as possible.  We just never really did any long walks.

Through the summer, we both saw our aerobic capacity improve through the one weekly class at CF, plus running in regular CF classes, and our weekend walks.  And suddenly, it was almost race time and we lamented that we'd not even done a 10 mile walk all summer.  How would this work out?

We left work early last Friday, trying to get to the race starting area in a lull during a rainy day.  We got our tent set up quickly in some light rain, and things stayed mostly dry.  We went to the pre-race dinner with friends.  After dinner, it was absolutely pouring.  We drove back to our tent.  For 20 minutes, we sat in the car, looking at the rain and the frequent lightning, wondering what to do.  I told my wife that I just wanted to drive home, leaving the tent and everything behind.  That wasn't realistic, but I wanted nothing to do with the rain.

Finally, I suggested finding a hotel for the night to avoid the worst of the weather.  I hated to spend the money when I had a free tent spot, but it allowed us to keep everything dry, we could shower in the morning, we would have access to coffee, and we would get a real night of sleep in a warm dry bed.  My wife even enjoyed a couple beers in the hotel bar before we went to bed.

We got up at 6:30 on Saturday morning, got some coffee, showered, got dressed, and had some more coffee.  By 7:30, we were parked beside our tent, and ready to go.  We got our race numbers, socialized with friends, and got ready for a long, long walk.

Just after 9:00, we were off.  We had started near the back, but we still got passed by a few people early on.  By 9:30, we were sure we were dead last, but one runner was late for the start and passed us a bit later.  After she passed us, we were all alone.

At this point, it became like any other ultra.  Keep moving.  Pay attention to your feet.  Eat.  Drink.  Repeat.  We finished the first 15 miles at about 2:45.  We grabbed our headlamps and flashlights and headed out for a second lap.  This one started out faster than the first had, but we definitely slowed down in the darkness during the last 7.5 miles.  We were 10 minutes slower on lap #2 than we had been on the first.  We finished a the second loop at about 8:40.  From there, we changed clothes and headed to Nashua for some dinner.  My stomach was off a bit and I struggled to eat a bowl of clam chowder.  My wife had no such problems (she did say her stomach felt a bit queasy, but I'm not sure I'm buying it), as she ate a burger and fries and drank a beer.

We got back to the tent later than I'd hoped, and we went straight to sleep.  We set our alarm for a bit before 7:00.  The goal was coffee and breakfast at 7:00 and we would start hiking at 8:00.  But, we were both tired.  Sore.  Blistered.  Sleep-deprived.  We talked around the issue of not going out again.  In the end, I think we both wanted to bail, but neither of us would say it first.  So, a little bit after 8:00, we started our final lap.

We were moving OK to start, but by mile 5, I was slowing down.  The turnaround boosted our spirits a bit, but we still had 7.5 miles to go.  But again, like every ultra, you just keep moving and you will eventually get there.  I did have the additional worry of making sure we would finish by the 30 hour cut-off, but we had plenty of cushion and we made it easily.

Our total elapsed time for 45 miles was 29:25.  Our "time on feet" was under 18 hours, but not by a lot.

I have a couple nasty blisters.  So does my wife.  We went to CrossFit on Tuesday and rowed a 5K time trial, but I had nothing.  I should have been able to do this in close to 21 flat, but it took me 22:22.2.  My wife worked hard to get under 30 minutes.  Being short is a huge disadvantage on the rower for my wife.

We rested again on Wednesday, and I think we are going to try CrossFit at an easy level tonight.

Killington opened the east coast ski season this week.  I have new skis and I will start work at Sugarbush in a few weeks.  In the interim, maybe I'll get out to fly fish for a bit, or maybe not.  Right now, I just want to recover from the race and get ready to ski.

After the race was over, my wife did suggest that we come back and try 60 miles next year.  I'm willing to give it a shot, I think.  Maybe.  Probably?

Friday, October 7, 2016

Another long absence, but it's due to a lack of anything interesting to say

Things are going pretty well these days.  I mean, life isn't without challenges, and after a cancer diagnosis like I got at this time last year, things will never be exactly the same.  But, right this minute, I can't complain.

I was doing some PT to help with swelling and pain after my last surgery.  Early on, I seemed to find some benefit, but as time wore on, the sessions seemed to hurt more and provide less benefit.  The therapist was doing lots of dry needling in scar tissue, and I was finding myself taking pain medication just to get through PT.  In my last session, she hit something with a needle that had me almost jump off the table.  So, we weren't really making much progress, and my primary reason for being there was to fix the muscle imbalance caused by the removal of most of my right psoas major muscle in March.  My sprinting, deadlifts and back squats are all going well right now, and all 3 require hip extension that activates the psoas.  So, I'm going to call it a success and move on.

Another reason that I'm stopping the PT is that I need time for some other medical help.  After 2 cancers for me (3 surgeries, 4 inpatient chemo sessions) and 1 cancer for my wife (2 surgeries, a 3rd unrelated surgery, and a month of radiation), I am a mess at times, at least from an emotional perspective.  I'm mad at times.  I'm sad at times.  I'm dealing with pain on a daily basis that will likely never go away.  The local teaching hospital has therapists within their cancer center.  These are people who only work with cancer patients and their families.  So, after thinking this over for a while, and talking with my wife, we decided it might be a good idea for me to talk to a professional about all of what I've been through, and what may still lie ahead.  Unlike a certain orange presidential candidate, I'm willing to admit that I need help, and I refuse to consider myself weak for needing that help.  So, I'm taking the step.  My first session this week was challenging.  A lot came to head - a lot that I didn't even realize I was simply holding in and holding onto, and just one hour had me feeling better.  I go back next week.

I still have another CT scan before ski season starts, but unless the cancer is back next month, I'm planning to teach skiing all winter this year.  The timing was a bit tough from an equipment perspective, but I took the risk and bought new skis and bindings this week.  The skis I wanted, the Nordica Enforcer 93s, have gotten such great press that I knew if I waited until after my scan, they would be sold out at the professional pricing level.  So, I bought them now.  Even in a worst case scenario, I should be able to sell them unused to a fellow ski instructor here in VT.

Unlike last year at this time, when I was recovering from a big time abdominal surgery, I am in a much better place this year and I was able to take my annual September fly fishing trip.  If anyone cares about that, the link to my fishing blog is in the sidebar.

Work is busy, but our company continues to just hold on.  I'm not a business development person, but the closest we are to a new contract right now is work that I've been doing with a company in Philadelphia.  This all started when they wanted to sell me some development tools, but over time, their company goals changed, and we are really better suited to collaborate on projects.  So, we are trying to introduce each other to our current customers and find ways to work together.  If we don't have a new contract or two pretty soon, it's easy to imagine us not making it more than 6 more months, at best.  Hopefully, it won't come to that, but we will see.

And, training continues to go OK.  I have pretty much officially regained the weight I lost last year while sick, even the part I didn't want to come back.  But, as I mentioned before, my workouts are going well, so I'm OK with things as they are.

I have gotten back to 375 pounds for the deadlift, vs. a best of 440 before I got sick.  My back squat is up to 295 (for a double) and I'm sure I'll do a single at 315 this coming Monday.  My Tuesday night aerobic capacity class is going well, and I'm really enjoying the days we do sprint work rather than baseline cardio work.

If I pull off my goal of 45 miles at the Ghost Train ultra in 2 weeks, this class will have been a major reason why.  My longest training day is only 8.5 miles or so, and I'm planning to walk 45 miles over a 30 hour period.  I even bought new running shoes - Altra Provisions.  I had never used Altra shoes before, but I know they are very popular in the ultra world right now, and so far, I love them.

See - not much of note.  I'm working, working out, fishing, thinking about skiing, dealing with the side effects of cancer, and just trying to get by.  If I was a praying man, I would also be praying that we don't end up with an orange jackass for President, but I'm going to have to trust the voters to do the right thing there.  I have to admit, and this is somewhat maudlin, that I've been wondering if this will be my last time voting for POTUS.  I will be in NYC on election day (second time in a row), so I need to vote early.  We have too many important state and local races to even consider sitting this one out.

Tuesday, September 13, 2016


I had my last cancer treatment in early March.  But, it was a surgery called a laparotomy, which entails a large incision in the abdomen and open (non-laparoscopic) surgery.  While still in the hospital, I was already up and walking a lot.  After my discharge from the hospital, I had to stay in NYC for a few days and I walked a lot on those days.

I got home and started walking on the treadmill while my wife did CrossFit.  Within a month of surgery, I added some rowing, and two weeks after that, I slowly started getting back into CrossFit classes.

Even now, due to pain from scar tissue, some movements are still difficult - burpees, box jumps, rope jumping and running, plus kipping on a bar.  But, I'm using some compression clothing to help with this, seeing a physical therapist, and using pain meds as needed to control the pain.

I've now been training, uninterrupted, since late April - almost 5 months.  And things are finally starting to come around.

Last Friday, I finished off a deadlift workout with a single rep of 375.  That's my heaviest deadlift in over 2 years.  My lifetime PR of 440 was done 3 years ago.

Last night, I did a back squat at 295 - my heaviest back squat in 23 months.  I think I might have been capable of doing 305 or 315.  My lifetime PR of 375 was over 3 years ago.

I then ran a mile in 8:39.  Not too fast, but my fastest in years.

I'm finally seeing some real progress and seeing my strength getting close to where it was.

I still have some things to get better at, but I'm encouraged by the progress.

On the downside, I haven't been doing any Olympic lifting.  Well, a little bit, but more for volume than strength.  We normally do Oly lifts on Tuesday, and I've been doing an Aerobic Capacity class that day instead.

Also, we've been doing back squats on Mondays and front squats on Fridays, but I'm opting to deadlift most Fridays.  So, my front squat is lagging my back squat.

And, don't even ask about my bench press or strict press right now.

But, as long as I can train like I'm training now, all of these things will improve.  It feels good to be on this side of the recovery and seeing real improvements from my training.

Tuesday, August 16, 2016

Too Busy to Post, and That's a Good Thing

I last posted in late May.  I've been swamped since then, but to be honest, it's good stuff.

In May and into early June, I pretty much fished every second I wasn't at the gym or at work.  And, I was at the gym a lot.

We had my daughter's high school graduation in May.  Then, we took off to Lake Tahoe for a week of vacation.  Vacation was spent with friends in a house they had rented at Lake Tahoe.  We got in a couple days of fly fishing, a lot of mini golf, some disc golf, lots of hiking and walking, and a lot of great meals, plus some visits with friends who live in CA.  At the end of the trip, we spent a day in San Francisco and saw a baseball game (the hated Giants won 8-7 over the Phillies, but it was a good game), and then we visited Amoeba Records - a store my son has always wanted to see.

As soon as we got home from CA, my wife and I showered, packed some clothes and headed to New York for my CT scan at Sloan Kettering.  The scan was completely clean - my first clean scan since I first heard the word liposarcoma.

By mid-July, fishing was getting very tough due to a mild drought and very warm summer.  It's been a few weeks now since I have fished, although I'm going to go way north to fix that problem this weekend.

I had a huge project at work.  I had re-negotiated our primary IT contract with the company that provides our servers for us.  This allowed me to consolidate some servers, add some security features, and make our systems more secure at a lower price than we were paying before.  But, it took almost 6 weeks to plan and execute the cut-over to the new hardware and some new software versions.

About the time we finished that project, my wife and I had our 30th wedding anniversary.  We had a really nice lunch in Boston the weekend before our anniversary, and we saw Bryan Ferry while we were there.  The weekend after our anniversary, I cooked a nice dinner with my wife's family, and we opened some nice wines, including two Bordeaux from our wedding year, one of which was the amazing Mouton Rothschild.  That wine is still too young at age 30, so I'm hoping to open our other bottle for our 40th anniversary.  I'm already planning a bottle of 1986 Chateau Margaux for our 50th.

And now, the house is in chaos as my daughter is preparing to head off to Syracuse next week to start her freshman year of college

In the interim, we are just trying to enjoy life.  I have my next CT scan in November, and if that one is clear, I will be clear for all of ski season.  My wife and I are training a lot - in the gym and walking and (some) running on the weekends, plus a little bike riding for me.

So, we are busy doing the things we love, living life, trying not to think about cancer too much, and just appreciating being able to do these things.  Life has been good.

We are still on the waiting list for the Ghost Train ultra in October.  My wife and I have modest goals for that race - 45 miles over 36 hours for me, and probably 30 miles for my wife.  We both intend to walk the entire time.

Thursday, May 26, 2016

Long time - no update

I am simply swamped.  I haven't had time to write an update here in weeks.

I'm working out like crazy.  My workouts at the gym are getting better.  My deadlifts, bench presses and squats are all improving rapidly.  I'm still far from my lifetime bests, but I'm back in the 70% range.  Hopefully, this improvement will continue.  I've been at CrossFit 3-4 days per week, walking or running on most days I'm not at CrossFit, and even on my rest days, I'm often spending hours fly fishing.

I'm doing more running and walking than I've done for years.  I am even on the waitlist for an ultra in NH in October.  It's a 36 hour long race, and my goal is modest - 45 miles over the 36 hours.  I simply hope to walk (run a little maybe) 30 miles on the first day, get some food, a shower, and some sleep and then walk 15 more the next morning.

I've been losing sleep to the hockey playoffs, which doesn't help me in terms of time management.  Being a fan of a west coast team who is finally going to the Stanley Cup finals has been draining.  I can't tell you how many games I've managed to miss because I fell asleep on the couch watching them.  If Pittsburgh wins their game 7, I may have a shot to go to a game in Pittsburgh next week.  No matter which team wins, the finals will mostly be in the eastern time zone, so I might be able to stay awake to see a few games.

On the down side, I still seem to be slightly anemic.  I have to get my chemo port flushed next week (they do it every 6-8 weeks to make sure clots aren't developing in the port where it enters your vein.  I'm going to have the lab draw blood for a CBC next week, to see if the anemia has resolved at all.  And, I'm still dealing with pain.  I see the doctor about that tomorrow, but I'm guessing the answer is going to be to "deal with it".  I'm not sure there is a better answer after three major abdominal surgeries in the past 30 months.  I'm guessing there is just going to be pain at times.  Regretfully, every workout, especially running, leaves me in some level of pain.  It hasn't stopped me from working out, but it takes some of the fun out of the training, knowing I'll be hurting after it's over.

Life is also crazy with my daughter.  She is winding down her senior year of high school.  Last night was her final lacrosse game in high school, and the end of her high school athletic career.  She had her best season ever, although the team didn't do great.  They got doubled up by an arch rival last night, which left her pretty unhappy.

Tonight, we get to see her completed senior project.  There are a few awards events to go to.  Graduation is in just over 3 weeks, and she's mostly done with classes and tests, but the events for the seniors are coming in waves.

But, I'm excited for her to get to this point, and I know she's excited about heading off to Syracuse in the fall.

And soon, we get to go on our first family vacation in years.  We'll be off to Lake Tahoe for a week.  I'll get to fish in the Sierra Nevada, we will hike a lot, and I'm guessing there will be plenty of mini golf.  Plus, we will get to see some friends that we haven't seen in years.

Tuesday, May 3, 2016

More training stuff

I ended up skipping CrossFit last Monday night.  After being very active all weekend and the week before, I was tired.  I walked for just over an hour while my wife did the CrossFit class.

On Tuesday, I felt a lot better, but for strength work, I opted for the squats I'd missed on Monday instead of Olympic lifting.  I did sets of 2 reps from 95 pounds to 155 pounds, and then singles from 165 to 225.  That last lift was my heaviest back squat since last May and it didn't feel too bad.  I could have gone higher if I hadn't done so many reps by then.  My lifetime max is 375, and I'm guessing I could do 245-255 right now.  After the squats, I did a scaled version of the "Hero WOD" DT:


Five rounds for time of:
155 pound Deadlift, 12 reps
155 pound Hang power clean, 9 reps
155 pound Push jerk, 6 reps

I used only 73 pounds.  My time and barbell weight were nearly identical to the last time I did this workout.

On Wednesday, we started off with push presses and I started at 75 pounds and increased until 120 pounds.  My best here is 188, so I was far from that number.  After that, we did a variety of things - ring rows, dumbbell floor presses, sit-ups, box jump-overs (I did step-overs), and wall balls.

By Thursday, my wife was exhausted, and I'd worked out at some level for 10 straight days, so we took a rest day.

On Friday, we started with deadlifts.  I did 5x5 at 235 pounds - more than I expected I could do.  I'm sure I could pull 315 for a single rep right now, but I was happy with this weight for 5x5.  Then, some superman holds, rope jumping, goblet squats and sit-ups.  The sit-ups were my first since surgery and they were a bit uncomfortable.

On Saturday, I had an early walk to breakfast with my wife and a friend.  Then, a 4 mile walk with the dog later in the day.  And finally, fishing in the evening.  I registered 18,000 steps on my FitBit, but nothing was super-strenuous.

On Sunday, it was raining and chilly, but I really needed to do something.  So, I put on my running shoes and went for a very slow 4 mile run.  It had been close to 2 years since I'd run that far, and I was really slow, but felt OK.  My HR was really high for the slow pace, but I felt pretty good out there.

Yesterday, we did a new class at CrossFit aimed at mobility and aerobic training, rather than the anaerobic work we do so often.  We were supposed to keep our heart rates at or below 180 minus age for a combination of running, agility movements, and walking with kettlebells overhead.  I had to really go slow on the runs to keep my heart rate anywhere close to the goal.  To be honest, the workout wasn't too tough, and I wish I'd had time to do some strength work afterward.  But, with an hour commute home after CrossFit, I simply can't stay in the gym until 8:00 at night.

Tonight, I'll do squats rather than Olympic lifting, just like last Tuesday.

I'm still dealing with some pain and general discomfort from the surgery, but it gets better all the time.  I think I'm at the point where I'm now willing to train at my limits, rather than forcing myself to go easy.  The main problem is that my limits aren't that good right now.  I've got a lot of work to do to get back to where I was 14-18 months ago, before I started to get noticeably sick.

Monday, April 25, 2016

Seven straight training days - and still going

I mentioned last week that I'd done CrossFit on Monday and Tuesday, leaving me really sore.  My wife was sore as well, so we walked Wednesday evening.  That was my second walk for the day.

On Thursday, I returned to CrossFit, although my wife walked again that day.  Her back was a little bit sore from some Oly lifting earlier in the week.  I got to choose my own movements on Thursday, and I did rowing, box step ups, farmers carries and bench presses.

Friday night, we had limited time (dinner with my wife's parents), but we walked for 70 minutes before dinner, in between rainstorms.

My plans for the weekend were a bit ambitious - bike ride, fishing, walking the dog and skiing.  But, I pulled it off.  Saturday morning, we went to Montpelier and I got my mountain bike back from the shop, where it had been getting a tune-up.  I got home and rode for about an hour - nothing too tough.

Later that day, I got out for a couple hours of fishing.  I had a few strikes, but I didn't manage to hook anything.

Sunday morning, we went for a 75 minute walk with our younger dog.  And, about noon, we headed to Sugarbush.  It has been my goal since before my surgery to ski at least one more time this season.  Luckily, despite the crappy snow year, the mountain was still open when I decided (with my doctor's approval) that I could give it a shot.  I told my wife that I wanted to do maybe half a dozen runs - just enough to call it a skiing day, without overdoing it.

We warmed up on Spring Fling, a blue trail.  I felt pretty good there.  Then, we went to Downspout, another blue trail that was in good shape.  From there, we headed to the summit and skied a black diamond run - Organ Grinder - twice.  The top was a bit challenging, but it wasn't too bad.  After the second run down Grinder, we headed for the base and caught a different lift up to Stein's.  Luckily for her, my wife opted for an easier trail down.  It was a good choice because the top of Stein's was big bumps - not very soft - separated by nasty chopped up ice.  We had three of us there - one PSIA level 3 instructor and 2 Level 2 instructors.  I think we have close to 60 years of experience between us, and we needed to rest and regroup a couple times on the way down.  It was challenging, but not really dangerous in any way.

After one more run on Spring Fling, my wife and I called it a day and headed to the boot room to change.  My two friends, meanwhile, decided that the bottom of Stein's was so much fun that they would brave the top again for one final run.

After they were done with that run, we all met for a few beers.  The mountain might still be open next weekend, but I probably won't ski.  I have some plans with friends and I'll probably fish, but my ski season is probably over.  I'm very glad I got that final day in for this year though.

Tonight, it's back to CrossFit.  My goal this week is 4 classes, after 3 last week.  Hopefully, I can do the classes without getting so sore this week.  We start tonight with more front squats and lunges, and those two lifts put the hurt on me last week.

Wednesday, April 20, 2016

Back to CrossFit and Paying the Price

I'm so sore I can barely walk.  No, let's be honest, I can barely move.  But, believe it or not, it's a good thing.  Over the weekend, I was moving a lot.  My daughter and I walked around the Syracuse campus a fair amount on Friday.  She accepted her admission that day, which puts that whole selection process behind us.  I think everyone is glad that it's over.  Anyway, we also spent 5 hours in the car on both Thursday and Friday, which is never a good thing.

On Saturday, I walked 4 miles with my wife and one of our dogs.  The other dog has gotten so old and her hips so weak that she is fine not going on walks these days.  But, the younger dog needs to drop a few pounds, so he gets to go along every time.

Sunday, I fished most of the day, and my FitBit recorded over 10,000 steps, but it wasn't really exercise of any sort.  On Monday though, I returned to doing CrossFit workouts.

I'm scaling the workouts.  A lot.  Even though I went into this latest surgery in better shape than my surgery last September, I've still lost a lot.  After the surgery in September, I resumed CrossFit 7 weeks after surgery.  This time, I started CF only 5.5 weeks after surgery.  It's not a huge difference, and I know I'm in better shape than when I re-started in November, but my strength is poor right now.  I'm also still slightly anemic.  I talked to my doctor about the hemoglobin levels last week, and she wasn't concerned at all.  But, despite very good blood work overall, I'm still not quite right.  And, the pain in my abdomen reminds me that I'm not fully healed.  The "typical" minimum recovery from major abdominal surgery is 6 weeks, so I'm certainly pushing the envelope a bit.

Monday, the workout started with front squats.  Just before I started feeling sick a year ago, I'd set a new front squat PR at 305#.  We had done a focused training cycle on front squats at the gym, and this was a big PR for me.  On Monday, I did 8 sets of 3 reps at 63#.  Yep, that's it.  And, it was plenty.  Then, some lunges with an empty 33# barbell on my back.  After that, I did 30-20-10 of air squats, with a 400 meter run after each set of squats.  It took me just over 10 minutes and I was surprised that running (really a slow jog for now) felt OK.  Not great, but better than expected.

Last night, we started with Olympic lifting.  Again, I kept things light.  I did 10x2 power snatches at 53#.  Then, 10x2 clean and jerks (power clean, push jerk) at 73#.  Both of those numbers are about 40% of my one rep max, but those one rep max values were set in December of 2014, before liposarcoma became part of my life.  After the Oly lifts, I did as many reps as possible in 10 minutes of 10 ball slams and 10 ring rows.  I did 6 rounds plus 11 reps.

Which brings us to today.  As I said, I can barely move.  My wife is sore as well.  I think we will skip CF tonight and just go for a walk.  Tomorrow night, we can choose our own movements at CF, so we will be able to pick things that don't hurt too much.

So, I've been out traveling with my daughter.  Out fishing with a friend.  Going for walks with my wife and dog.  Things are returning to normal in many ways.  I even hope to ski this coming weekend - one last day on the slopes for the season.  But, in the back of my mind, I feel some level of desperation.  I'm going on vacation in mid-June.  The whole family is going to Lake Tahoe for a week right after my daughter's high school graduation.  But, the day after we get back, I'll be going to NYC for my first post-op CT scan.  The odds are good that the scan will be clean, but there are no guarantees.

So, the desperation I feel is the need to get myself back into shape quickly.  If I need more treatment, I want to be strong going in.  If I don't need more treatment, I want to be in good shape to enjoy the summer anyway.  I feel like I've just lost so much fitness in the past year, and even over the last 2.5 years, if I include my prostate cancer surgery.  But, I can only regain strength and fitness at a fixed rate.  I'm old enough that I know I'll get hurt if I push too hard.  I hope I'm experienced enough to not do that.  So, I need to find that fine line, to regain fitness as fast as possible, while not getting hurt.

And, I'd like to go a day now and then without worrying about cancer and the risk for recurrences in the future.  But, I'm guessing that's just not going to happen.  Maybe ever.  But, that doesn't mean it will rule my life.  As long as I'm clear of cancer, I'm going to dictate how I live my life, not the doctors.

Tuesday, April 12, 2016

Mixing it up a bit

Last Wednesday, I hopped on the Concept 2 rower and rowed a slow 5K - 25:20.  I followed that up with a mile on the treadmill.  The next day, I was a bit sore, so I walked 3.5 miles on the treadmill.

After that, the opening of trout season took over.  My wife and I saw a fly fishing film Friday night, so there was no workout.  I fished a decent amount of time over the weekend, and despite being on my feet all day, it wasn't really a workout.  And, just like in prior years, I caught zero fish in the Otter Creek Classic.  Someday, maybe...

Yesterday, I was looking at the CrossFit workout, and I found myself tempted.  Not by the strength training, which was front squats and barbell lunges.  But, the metabolic workout was 30 box jump-overs, 50 Russian Kettlebell swings, 100 air squats (just bodyweight - no additional weight), 50 more swings and 30 more box jumps.

I thought about it, but hopped on the rower instead.  While I was on the rower, one of our coaches, a regular competitor at the CF Games, asked me how I was doing with my recovery.  I mentioned that I'd thought about doing the workout.  She encouraged me to give it a shot, but to scale it properly.

So, I finished my 5K row in 23:36, much better than last week, and then set up for the workout.  I decided I would do 30 box step-up-and-overs, 30 kettlebell high pulls, 50 air squats, more high pulls and more box step-ups.  And, that was plenty for me.  It took me 7:31, about the amount of time it took the better athletes to do the prescribed workout.  It wasn't too bad, but I'm sore today.

The workout tonight is Olympic lifting followed by Fran - a combo of thrusters and pull-ups.  I think I'll walk for the first part of the workout, and then do a modified version of Fran - light thrusters and ring rows instead of pull-ups.

I see my medical oncologist tomorrow, mostly so she can see how I'm doing post-surgery.  I have to set up periodic appointments to get my chemo port flushed.  I may request a bit more pain medicine for the next week or so.  I'm using less all the time, although car rides are uncomfortable, anytime I sneeze it hurts a lot, and I'd like to taper a bit with less strong medications than I'm using now.  Anytime I'm not moving at all, such as at work or overnight, I'm fairly comfortable at present.  But, I still have more pain at times than Tylenol alone will handle.

But, things are better every day.  This weekend, I'm taking my daughter on her final 2 college visits before her looming decision day.  I think the decision is pretty much done, and she will end up at Syracuse.  We are going to Syracuse on Friday and then URI on Saturday.  Saturday is also her 18th birthday, so I want to stop somewhere nice, maybe in Boston, on the way home from URI to take her out to a nice dinner.

The next day, she is planning to celebrate her "adulthood" with a tattoo.  I'm not going to participate in that event (she knows I'd prefer she not do it, but at age 18, I'm not going to stand in her way), so I might sneak out fishing for the day.

Tuesday, April 5, 2016

Walking, walking, walking

Other than work and sleep, all I seem to be doing these days is going for walks.  I'm just shy of four weeks since my surgery.  My incision is still not completely healed, and I'm still wearing some sort of "gut girdle" over my shirts to support the incision and perhaps some internal organs as well.

Later this week, I should be able to do some rowing on the Concept 2, but so far, all I've done for exercise is walk.

When my wife goes to CF, I either walk on the treadmill if it's cold, or I walk outside if it's nicer.  Last night was the treadmill.

On the weekends, I'm going for walks every day.  Sunday, I walked for 90+ minutes in a mini-blizzard and I swear I walked into the wind the entire time.  Even my dog was smart enough to skip Sunday's walk.  He was all excited to go until he saw the snow and felt the cold air.  Then, he retreated to his crate and I walked by myself.

He had walked with me the day before though, so he's getting in some walking.

Last week, I walked 4 evenings while my wife did CF.  I walked at lunch for a while on the day she skipped CF.  So, it's pretty much every day.  And, I'm itching for more.

I do plan to row, at a very low intensity level, later this week.  For the next two weeks, I'll probably mix rowing and walking.  After that, I'll start some bodyweight exercises - air squats, push-ups, pull-ups, etc.  Maybe some light dumbbells.  And, 2 weeks after that, I should be using barbells again, maybe a bit sooner if I start to feel better soon.

I'm still taking some pain medication, to be honest.  I had a major incision and major abdominal surgery.  It typically takes at least six weeks for a complete recovery from surgery like that.  I will see my local medical oncologist next week and see what she thinks about my progress and activities.  I'm hoping I won't feel the need to ask her for any more pain medication.  I'm trying to taper off of those meds, but the pain is still there and my body isn't ready for me to quit the meds just yet.

So, hopefully, I'll be doing CrossFit classes again by early May.  I leave for a vacation on 6/18, so maybe I'll have six weeks to get myself fit again before that trip.  As soon as I return home from that vacation, it's time for another CT scan to see if the cancer has returned.  If I'm in the clear, I'll have 4 more months to focus on training (and fishing).

If the cancer does return that quickly, I have no idea what the treatment will be.  To be honest, I'm just trying to not worry about that right now.  But, for the past year, I've had very little good news related to this liposarcoma and I don't want to be unrealistic with my expectations.

But, it would certainly be nice to have a clear scan and be allowed to just continue on with my life.

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.

Thursday, March 17, 2016

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.

Wednesday, March 9, 2016

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.