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.

Thursday, December 4, 2014

Another Day of Chemo

Yesterday, Barbara and I drove to Dana Farber for the start of Cycle 8 of my chemo regimen.

We had an early appointment - 7:15. When we arrived there, Barbara looked at the schedule and said,"We could actually get out of here early today." Big mistake. I gave her a dirty look and she realized immediately that she had jinxed us. Now, the truth is that as an engineer, I absolutely do NOT believe in jinxes or such like. In spite of knowing that they are totally meaningless, however, I have found them to be profoundly effective.

You may recall that last week, my phosphorous was too low to get treatment. So, over the last week, I took phosphorous pills and loaded up on foods that are high in phosphorous. And my phosphorous levels were plenty high enough. Someone suggested that I might be "phosphorescent" enough for them to use me at the top of a Christmas Tree. Nor did I burst into flame - even though besides taking phosphorous, I am also taking Magnesium. No - the problem had to to with Neutrophils which were way too low. It registered 0.77 where they require at least 1.00 to give me chemo.

Well, clearly this was bad new for the chemo, but I explained that this had happened before and that if I exercised, I could probably get the number to come up. So, I went to the stairway and managed to do 20 flights after which I submitted to yet another blood test. This got the number up to 0.93. To me this indicated that I was improving at the rate of .08 per flight and that all I really needed to do was to climb one or two more flights. The infusion nurses did not agree. They called the Clinical Study nurse. While waiting, I headed back to the stairway and told them to call me when the nurse showed up. I said that if I didn't answer the phone, to send someone to the stairwell with an Automatic Defibrillator. I managed another 17 flights before the nurse showed up. She decided I needed a shot in the arm - which she gave me (literally) and told me to wait two hours and get my blood drawn again. By this time I was too beat to do any more stairs, so I went outside and wandered around looking for lunch.  Which I found and brought back to Barbara.

They redid the blood test and this time it had nearly doubled - to 1.78, so I got my chemo. We finished everything at around 2:45.

One of these days, I am going to look up what Neutrophils are.

I wish I had cancer marker numbers from last week, but they are still not posted. I had hoped for additional numbers this week, but I am not not sure they are retesting.

Besides that, there is not much else to report over the last week. We are still getting settled in the Fox Down Abbey apartment. We had a "punch list meeting" this morning which went well. And I managed to make another small bowl.

Last Saturday, I bought a 5 foot tall Singing Santa which Barbara hates. It was not my fault because it was on sale. Barbara says it scares the daylights (well - not exactly "daylights", but you know what I mean) out of her every time she sees it. At first glance, it appears to be an intruder in a red suit. She says that it even scares the cats. They stand in front of it and meow. I think they want it to pet them.

There is a switch on it that will cause it to randomly (and loudly) sing Christmas Songs - yes - his lips do move. I am thinking of throwing the switch. This will get Barbara into the Holiday Spirit and prevent her from being surprised when she sees the Santa. It will also most likely get the two of us (me and Santa) thrown out of the house.