Thursday, November 8, 2018

For now, it's status quo

I finally gave up on getting rapid resolution out of Sloan Kettering.  They were not answering my questions, and sometimes I had the impression that they didn't even understand that I had a problem in knowing what to do next.  The docs at Sloan Kettering set me up for a long day at the hospital on 12/4, and I'm just going to wait until that day to raise the treatment issues with them.  I wouldn't do it this way if I wasn't already in treatment, but I am being treated, so I'll go with that treatment for now, and hope it is effective.

I think that the radiation oncologist will be surprised when I meet with him and he finds out that the radiation hasn't happened yet.  He doesn't live in the world of insurance approvals and having bureaucrats run your life.  At the same time, I tried to work with his office to see what they wanted me to do, and I got nowhere,  So, they can't claim that they weren't informed of the problem.

This will be my first day ever at Sloan Kettering where I'm seeing a radiation oncologist, a medical oncologist, and surgical oncologist, and my last appointment is with both the medical and surgical oncologists together.  By the time that day is over, I should have my future laid out for me.

My insurance approval is good until April and my wife and I are staying on the same insurance policy next year.  So, the approval should be good for January if we do proceed with the radiation.

My new reclining chair at home has been quite a relief.  It allows me to relax comfortably in my living room, without hitting the same pressure points that my bed hits.  My fatigue is so bad these days that I felt like I was getting bed sores from laying down much of the time.  The chair has relieved some of the pressure points and I'm feeling much better just a week after getting the chair.  My wife is a genius at times.  Well, maybe all of the time.

This coming Saturday, I have my orientation day at Sugarbush for my 19th season of work.  As I mentioned in my last post, I tried to resign my position and they basically refused to accept my resignation.  My goal is to work within what my body can handle and have some fun.  I don't think that I'll ever work 2 days in a weekend, but I will try to work the more stressful days - opening day for the program that I work in, holidays, etc.  I'm glad the mountain was so open to accommodating my illness.  I think that's one of the advantages to working for a privately owned mountain rather than a mountain owned by a mega-corp.  Being an employee there really feels like home, and I really appreciate that my employers were open to a creative solution to keep me on the hill.

So, for now, I stay the course.  By the time I get to NYC, I will have finished 3 cycles of Eribulin, the current chemo drug.  That should be enough time to see if it's having any effects.  And, we are doing something, which is better than doing nothing, so I'm OK with waiting a bit to decide on the radiation.  I just hope the docs aren't surprised that the radiation isn't done.  I've contacted their offices numerous times to discuss this issue.

No comments: