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.