Thursday, January 3, 2013

Day 201 - the second opinion for real

Sorry to have a "tease" for yesterday's post, but I was so tired at the end of the day, that it was a bit of a victory to get that much out.
So, I suppose you want to hear all about our trip to the Dana Farber and how Terry said "Kenmore" and I thought he said "Kendall" and we ended up on a tour of Cambridge before we finally got back on Storrow avenue and there was this white truck that...No? That's not what you were most interested in?
OK, well we did eventually get there after the Cambridge detour and for future reference "Jimmy Fund Way" (the road that leads to the parking garage for the Dana Farber) is only marked in one direction so it's tough to find their parking garage if you are coming from the north. After parking, first time patients go up to the second floor registration. You give your name to the greeter just like at the Apple store and he tells you that they're running late and please have a seat and they'll call you when it's your turn. Half an hour later, he directs you to your registrar who sits across a desk from you without making eye contact and clicks her mouse 14 times (not that I counted) without asking you any questions. It's the weirdest thing because it looks like she's navigating around a bunch of pages, but why would she have to do all that navigating and clicking without interacting with me? If she is filling in information about me, where is it coming from? If it's just a bunch of clicks she has to do before she is ready to start, why isn't their computer system better designed so she doesn't have to waste the first 2-3 minutes every single patient is sitting in front of her. I know why they're running late. Because no one has put enough thought into their computer system! (end rant) She took a copy of my driver's license and insurance card and clicked some more. Then she gave me my patient ID card, my wrist band and a patient real time tracking badge (PRTT badge). She said the purpose is that they were trying to figure out patient flow. What's weird is that as soon as I checked into the clinic, they took it back. I guess they wanted to know how much time we spent in the cafe.
Next, we went to the research nurse who asked if they could take an extra vial of blood and store it for future research into the genetics of leukemia. Sure, why not?
Then, we went to the lab where a very nice and super efficient phlebotomist took eleven vials of blood. That is a personal record for me. Previous was eight.
And off to the cafeteria. Their cafeteria is pretty nice. I had a taco salad with salmon and curly fries. The salad part was really quite tasty. The salmon was ok, but no better. On the other hand, we weren't there for the food. Well, we were there for the food, but we weren't at the Dana Faber for their cafeteria.
While we were waiting and eating, we had the opportunity to look at all the other patients. It is amazing that there are so many people with cancer. Almost everyone had at least one person with them and it was an entertaining game to try to guess which is the patient and which the loved one. Some pairs were easy to tell: poorly fitting jeans, bald, a mask, but there were a couple of pairs where I got it wrong. (You could tell the patients by their PRTTs if you couldn't see their wristbands under their shirt sleeves.) I was interested to see that the patients there did not appear as debilitated as those at the NCCC. I saw one patient arrive by ambulance, two in wheelchairs and one with a walker. This is out of literally one or two hundred patients that I saw milling around the lab area, the registration area and the clinic. The really fascinating thing about the most debilitated ones is that they appeared to be much, much more likely to be alone than their able bodied compatriots.
When we got to the clinic, they were only running thirty or forty minutes behind. Here is a picture of the clinic window's view:

Dr. Stone was pretty impressive. He printed out a NEJM article for me and gave me about five other references. When he answered a question, it would not just be with a few sentences, but with several paragraphs, beginning with a review of the literature, a true academic. It was probably a relief to him that he could practically pretend I was an onc fellow and just teach me what he would teach any doc who had asked that question. The result was that I probably got way more information than I needed and went out with a slightly overloaded brain.
I'm going to split the post here so it's not quite so overwhelming.

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