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.

Day 200 - second opinion

The second opinion went well. It is complicated, but the upshot is that Dr. Stone also thinks I'm done with chemo! We didn't get done there until 5:30 and then we had to go out to dinner so I am exhausted and will tell you more tomorrow. The other very good news is that my labs were normal. More hoorays!

Day 199 - new blogging app

The original blogger app that I was using was not very good and I couldn't figure out how to put pictures in it and it would randomly decide to hang. The blogpress app is rumored to be nicer and so far it is.
As you can see below, I have managed to figure out how to get photos in the blog.




A 47 year old physician was diagnosed with AML and underwent induction and consolidation chemotherapy. Six months later, she was in remission but was left with banded areas of hyperpigmentation in her nails. This phenomenon, called Muercke's nails is associated with hypoalbuminemia, malnutrition and chemotherapy. Nails grow at the rate of about 1 millimeter/week and the lines are expected to grow out over the next few months.
With a little more buffing and expansion, I will try sending it in to the NEJM images in clinical medicine series.
There was a recipe in the NYT for bagels so Terry made some this morning. They were delicious and homemade bagels is a fun first breakfast of the year.
Ellie insists on growing so we had to visit Target for more jeans later in the day. This was an alarmingly long visit and I had plenty of time to observe the employees. The poor woman who was running the desk where they make you count how many things you're taking in to the dressing room got about eight calls from people wanting to know "Are you open now?" "How late will you be open?" No one called to ask anything else. We also got her the flu shot and she did great. I sang to her in the pharmacy consultation room while the pharmacist gave her the shot to distract her from looking at the needle. It's pretty hard to relax on command when you're eleven, but she was so shocked to hear me singing in public that she was able to.




We are forcing paperwhites this winter. The look sort of like little tufts of snow brought in the house.
Tomorrow, Terry and I are going to the Dana Farber to get my second opinion. I haven't had labs drawn in over a month so I'm looking forward to checking up on my marrow's production for the last month to make sure it's been keeping up with the quality control.
For me, for tomorrow, I am hoping for a good set of labs and a useful second opinion. For you, I will hope for useful advice, too.

Day 198 - work and weaving

This morning was a work day, more chart reviews and then this afternoon, I came home and hung out with my girls. Ellie is finally over her cold so she came downstairs and interacted more than she has in the last several days. I missed her and am glad to remake her acquaintance. Emily and I went out for coffee to D2 in downtown Exeter. Earlier today, I think some one made a mistake and gave me regular instead of the decaf I usually drink so I stuck to apple cider at D2, hoping to be able to sleep tonight.

Later I did some weaving and used my new Christmas reed for the first time. (A reed is the stiff thing that you pull forward to push the yarn down into the fabric.) My old one had ten little divisions per inch which is nice, but means that I can't use any very large or soft or lumpy yarn in the warp. The new one has six per inch which gives me some new options. Of course, the first time I use it, am I taking advantage of that and making a fluffy, open weave something or other? No, I am warping at 18 threads per inch, three very fine little cotton and linen threads per dent (each little opening is a dent). I am working more on learning double weave, but can probably use the results as coasters.

Tomorrow, I have no specific plans except hanging out with my family for a pleasant start to a hopefully happy 2013. For me, I will wish for time with my family for tomorrow. For you, I will wish a safe, healthy and happy New Year's Eve and, if I can have a stretch wish, the whole New Year.

Day 197 - cross country skiing

Yeah! I got my wish. Maggie and I got to go cross country skiing today. It was beautiful.



Maggie was extremely happy with the whole experience. I had a good time, but at one point, I got ice on my ski and couldn't get it off. I tried to scrape it off with the ski pole, but I actually broke part of it. Then I tried to slide it off with my fingers and they got wet and started sticking to the metal part of the ski pole. At that point, I decided that I would just pretend my skis were oddly shaped snow shoes and plan on expending a little extra energy. By the end of the trip, I was skiing on the right and walking on the left. swish stomp swish stomp swish stomp. Fortunately my dog is graceful because I'm sure I looked pretty goofy.

Maggie had so much fun racing around in the snow--those dogs with lots of fur get so invigorated by snow--that we didn't see much of her the rest of the day.

I, however, still had some energy. Emily and I went to Starbuck's then made the mushroom ragout and penne pasta recipe from this week's NYT. I had never made anything with dried mushrooms before, but now I know how to use them.

Then I spent some time weaving. For some reason, the left side of my harnesses stretched more than the right side so that the left side was half an inch lower than the right. I don't really remember how

Day 196 - dogs a-walking

The big activities today were breakfast with Terry and a walk with Ana, Maggie and Ana's dog, Rykka. I forgot to take pictures, but they were cute tromping around the PEA forest in the tiny bit of snow we had.

After our walk, we went to lunch at the Good Karma Cafe which was delicious, but you can't mind the snake oil salesman at the cash register. We heard about the purported health benefits of many things he sells, among them vibrating pads you stand on to "open up your lymphatics" and an infrared sauna that is more effective than regular saunas at allowing your body to "cleanse itself of toxins." If you analyze your sweat after a regular sauna, "it's 7% toxins and 93% water; after an ultrsound sauna, it's 20% toxins and 80% water, because it's a deeper sweat." I know you come here to get the latest medical information so that is why I'm telling you this. It was all new to me, so I thought you might not know it either. We split a plate of nachos which were well-loaded. The beans, guacamole and salsa were perfect and even the vegan cheeze was tasty although not as tasty as real cheese would have been. For my meal, I had a vegetarian reuben which had flavors reminiscent of a "real" reuben, but was better as a thing on its own. Emily and Ana were happy with their lunches too, although I had Emily's salad. There were lots of raw sesame seeds on the salad and instead of having the nice taste and texture of roasted sesame seeds, they had no taste and the texture of fine sand. Next time, I'm getting my salad with extra dressing and no sesame seeds.

In the afternoon, I hung out with Emily, read a bit of the most recent Annals and generally goofed around. Tomorrow I think I will generally goof around and finish the Annals, just for variety. I was a little more tired this morning than I would have expected to be; I assume because of Friday's work. It is hard to tell for sure what my level of tiredness is now, however, because I had a nice walk which I haven't in a while. If the snow continues, we may be able to break out the cross country skis tomorrow! We live about three or four blocks from the entrance to the Phillips Exeter Academy grounds where there are maybe fifty acres of woods and fields we can make tracks on. We used to live one block away, but they closed the entrance closest to our house. The gate opened just beyond the outfield of their baseball diamond and I think some dog owners did not clean up after their dogs. It probably doesn't take too many piles of dog poop in the outfield to make them close the gate, sadly.

For me, for tonight, I will wish to wake to good cross country conditions. For you, I will wish that you will be happy with the weather where you are.

Day 195 - a long work day

Locals will remember the storm of earlier this week where I decided against driving as slush fell from the sky. The downside of that was that today was an eight hour day. It was pretty interesting and fun which is a lot to say about a day largely spent with paperwork. At the end of the day, I went to CMC and signed my documents and visited with some of my pals. I happened to run into one of the same people I saw last week. She told me that I looked less tired today than I had last week. That is funny because wow! I'm tired. The last thing I did was to meet with Lisa, who will be the social worker in the outpatient palliative care clinic. We had a nice time chatting and I think will really enjoy ourselves in the clinic.

The very last thing I did as I was leaving was to watch a man on a gurney go out to an ambulance. It made me think of the times I went by ambulance from Manchester to Lebanon. The second time I was kind of sick, but the first time I was really pretty sick. There is a photo of me that is not quite shocking, but certainly disturbing where I am lying in bed and get cold if I take off my neutropenia mask. When I got to Lebanon, I let them transfer me from the gurney to the bed. I did not insist on doing it myself or even helping. Yikes! I must have been quite a sight. I'm not sure what level of comprehension of my last six months experience I am at. That sounds stupid because of course I understood really well what happened to me in real time as it happened, and I really did understand--I'm a doctor; I had AML and chemo and neutropenic fevers and..., but I didn't totally understand it, like I'm not sure I understand that I was actually kinda sick some of the time. I think about that I understood my technical details really well and am always ready to guide the conversation there.

I've never taken care of a psychotherapist. I wonder if they always try to bring the conversation around to the underlying significance of things. "Yes, an antibiotic would be a good idea, but tell me, what in your childhood has made you so aggressive towards microbes?" A novelist: "An antibiotic would heighten the tension between my immune system and the bacteria. I'm not sure I've fully explored the frustration my immune system is experiencing right now. Can we wait until tomorrow to start it?" There's probably a whole line of silly jokes in there.

For me for tomorrow, I will wish for a restful night of sleep because I need it! For you for tomorrow, I will wish for a restful and relaxing whichever time period you need most.