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.

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