Friday, December 26, 2014

Merry Christmas

Merry Christmas Everyone

I am currently sitting on an Amtrak train on the way to visit one of my brothers in New York City. On Saturday, he and I will head to northeastern Pennsylvania to visit our other brother and his family at their lake house. I plan to return to Fox Hill next Tuesday. Barbara has declined to accompany me in favor of working out some of the decorating issues at Fox Hill. She is happy to leave me with some "Brother Time".

I am just coming off of a "break week" during which I have felt particularly lively. There were several days when I was very tired - taking up to 4 hours of naps after getting a good 9 hours of sleep overnight. But still, this was only for a few days and when I was not sleeping, I was feeling quite lively and quite strong.

We went to Dana Farber yesterday to start Cycle 9. Each cycle is 21 days and you may have noticed that I try to update the blog after each doctor visit. After 9 cycles, I am finding that the reports do not differ very much. But I guess that in itself is news.

So, yesterday, the doctor told me that the numbers continue to come down, though relatively slowly. His goal is to get me to a stem cell transplant sometime in 2015 and he says that he likes to see the sort of slow steady progress that I have been showing. He says it tends to last longer.

You may recall that this is part of a clinical trial of a drug called Panobinostat. It is not yet approved, so I guess I am lucky to be part of the trial. Cycle 9 is using lower doses and fewer doses of some of the other drugsd than cycle 8 (which means only one trip to DFCI per week rather than 2 - Hooray - as long as it still works). The thing is that they give me a log form to fill out. And, the slots to fill in do not match the schedule of drugs they told me to take. One would think that this error would have been discovered by the other patients who are on cycle 9. Hey - wait a minute? Do you suppose that maybe there are no other patients on cycle 9 with this drug? Barbara tells me that I am jumping to conclusions and I suppose I am. Really I don't mind. It seems that the drugs are holding the cancer down and I continue to tolerate them, so why not?

Meanwhile, here I sit on the Amtrak. Interesting. It looks like it will be a half hour late getting into Penn Station. So far, the ride is reasonably comfortable, though I think I am getting bounced around more than I would in the bus. The Amtrak fare is close to $150. I think the bus costs $25 and is just as fast. But the Amtrak station in only 5 miles from Fox Hill.

Of course, this fare includes the $38 up-charge to travel business class. I am trying to figure out what I am getting for my $38. The conductor told me that I can get a complimentary beverage in the dining car. So, I picked up a $38 dollar bottle of cranberry juice. I would not have minded as much if I could have gotten a $38 half bottle of cheap wine, but apparently that is not on the menu. I am also entitled to a free copy of the NY Times - which I already read on-line this morning. Oh - and there is a couple more inches of leg room. That's it.

It is the first car on the train (after the engine). I guess that is good, but I can't help but wonder why this is an advantage. It is furthest from the dining car, though anyone who has ever eaten the Amtrak food might consider this another advantage. But, if something goes wrong, the first car is most vulnerable, right? The first few cars work as a kind of cushion for the cars as the end of the train as the whole thing collapses. Also, we have the longest walk from the terminals.

I think there are about 8 cars on this train and only one Business Class car. And the business class car is nearly empty. I wonder why.

The other thing is that Amtrak now offers free Wi-Fi. It doesn't actually connect to the internet most of the time and when it does, it is VERY slow. But it is Christmas and "it is the thought that counts". I wonder if the internet service in the the rest of the train is the same internet that doesn't work in Business Class.

Maybe I will travel coach class on the way home.

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