Monday, December 31, 2012

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.

Sunday, December 30, 2012

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





Saturday, December 29, 2012

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.

Friday, December 28, 2012

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.

Thursday, December 27, 2012

Day 194 - quite dull

Today because I do not have a time critical job and the snow was bad and I saw a car tipped over and off the expressway before I had even left Exeter, I decided to stay home. I'll work an eight hour day tomorrow. What did I do with my surprise day off? I read an NEJM on my ipad, played sudoku and set it up so that I can read the next Annals on my ipad. Each app is somewhat time consumingto get on the ipad, figure out how to use it, etc. Ellie is still sick so a lot of my day was also spent ferrying her ice cream, pizza and kleenex boxes, poor kid. Emily and I did two crossword puzzles and I did do a hill of laundry, too. I guess I did more than laze around all day, but it felt like a very lazy day.

The most recent NEJM has a couple of articles to recommend it to me. There was an article on continuous renal replacement therapy. Hennepin County Medical Center, where I did my residency was a bit of a renal center of excellence so I am always a little interested in things renal. We had two continuous renal replacement therapy machines when I was there and they were some of the busiest equipment in the hospital. The other article I found interesting was on amniotic fluid embolism which I think is the absolute most scary diagnosis in medicine. The fact that it hits women who have just given birth and has such a high mortality rate if not handled correctly is why it gives me the shivers. I suppose I also have some amount of identification with the victims and have seen a case of it (not acutely; I was covering for someone else and rounded on her several days out). Both of these make it seem much more real than say SARS or ebola which are also pretty frightening diagnoses.

The final article which might be of interest to more than me was about the on-going controversy about the "maintenance of certification" exam that those of us who are not grandparented into boards have to do. Many people complain that it is expensive, time consuming and not very relevant, that there is not a lot of evidence showing that doing MOC is actually a useful thing or that it improves people's practice. I have to do it in the next couple of years so I am following the discussion from a more informed and interested point of view than I might in three years when re-boarding will be 8 or 9 years off again. I am sure nothing will be done before I have to do it, but it's an issue that seems to get a lot of doctors a bit worked up so it's fun to watch.

Tomorrow, as I mentioned above, will be an eight hour day--my first, so I will wish for stamina and endurance for myself. For you, the energy to do what you want with your day.

Day 193 - non inferiority

The highlight of today was helping Emily buy a pair of her own Dansko's. Otherwise, I helped Ellie survive her cold and had coffee with Patrick. Tomorrow I go back to work again unless the snow keeps me in.

Since today was not a very exciting day, I'll finish telling you about the Dec 26 JAMA. There were a bunch of articles that I found uninteresting and two that I thought were really interesting. There was one about how to use a noninferiority trial and a clinical crossroads on varicose veins. I had not really thought about noninferiority trials in any organized way so this was helpful to me. The basic idea is that the new treatment is compared to the old treatment in terms of efficacy and in order to be "non-inferior," it needs to be within a pre-specified range of efficacy. The efficacy range is determined by deciding how much of an improvement the new treatment is over the old in terms of convenience or acceptability to patients. When I learned about non-inferiority trials as a resident, our local statistician told us that a trial that was designed as a non-inferiority trial could not show superiority, that non-inferiority was the best it could do. This article states otherwise, but does talk about how a failed superiority trial can be recast as a successful non-inferiority trial. It is against the "rules," but not all journals go back and check the design of the trial as submitted before it was started and not all trials even are entered in the clinical trial registry although they are supposed to be. I think what this means is that non-inferiority trials from non-first tier journals are suspect.

They also talk about the importance of the "range of efficacy." For instance, in one trial, a new beta blocker was found to be non-inferior to an old ace inhibitor for cardiovascular death or hospitalization. The range of efficacy was 5%. The burden of taking a beta blocker might actually be higher than that of an ace inhibitor and cardiovascular death is a big-ticket item so a 5% non-inferiority margin is not really appropriate. This echoes what I remember being taught in residency about reading old fashioned superiority trials, that before you read the results section of the abstract even, you have to decide what amount of difference between the two arms would be enough for you to care about. Each new fact takes up valuable real estate in your brain and time spent reading and evaluating study A cannot be spent reading study B or doing homework with kids or cooking cheese puffs so it's not a "no-brainer" decision. Some studies report differences that are statistically significant, but might not be enough of a difference to make it worth your while to read them. These studies ask the same of us. One has to decide what would constitute clinical equivalence. If the burden is not great, a 5% decrease in efficacy is too high a price. If the burden of the old treatment is huge or the clinical outcome in question is trivial enough, a larger decrease in efficacy might be acceptable.

The other article I found interesting was a clinical review of varicose veins. I don't remember being taught a single word on varicose veins and they are pretty darned common so it was nice to have a primer.

Want to see a recent picture of me? Sure you do.

By the way, here is the Christmas present I was working on a month ago or so. It was for Terry and he liked it. Ellie made the ceramic mug in front of it. Pretty nifty, huh?



For me, for tomorrow, I will wish for a safe commute. For you, I will wish safety in the storm, regardless of your interaction with it.

Tuesday, December 25, 2012

Day 192 - Christmas

Yesterday's post was written from my fabulous Christmas present, an ipod mini. I had such a frustrating time trying to get dropbox and blogger to talk to each other that I've gone back to the imac for this post. The thing is, this imac is on the fritz. It doesn't work very well and I'm sure it's going to fail before long. I'm going to use and ipad then for all my computing needs--I hope--so it's time to practice, practice, practice now. Other than dropbox problems, it's pretty nice. It's tiny and light and with its light blue case, so pretty! I don't really do games, but am hoping that it will turn out to be a great e-book reader and good for sending email (with its bluetooth keyboard).

Other than present opening and present playing, today's main activity has been exercising the dog so she would not be crazy pants during present opening. This turned out to be a failed mission, but we both enjoyed being out in the snow. My favorite part of when she chases a tennis ball is how as she is far from it, her tail is slightly below horizontal, but as she gets closer, her tail relaxes and spins in all kinds of crazy ways. Here she is triumphantly returning.
There is a foul pond in PEA that she enjoys swimming in. When she comes out, she stinks and is all muddy so I have to get her in the much cleaner river if she wants to be welcome in the house. It makes absolutely no sense, but the pond water is open, and the river is icy by the shore. Maggie is sensible enough to stay out of the river if it's icy unless there is a tennis ball within sight calling out to her, "Save me!" She rammed her way through the four feet of very thin ice by the shore to get out to where the river was completely open and when she came back, she was clean. I know to put up with stinky, dirty dog if the ice is thick because it can be dangerous and dogs (and people who think they can rescue their dog) get hypothermia or worse every year in the rivers in NH. Maggie came out of the river wet on the surface, but her fur is so thick and oily that all she had to do was roll around in the grass and voila! dry dog.
We are going to go to Tommie's house to have brunch for dinner in a little while (I'm making the pancakes and waffles). I think this sounds like a good meal. The one brunch exception is that we are having Beach Pea deserts.

For me, for tomorrow, I will wish for happy technology. For you, I will wish for a distinct lack of frustration.

Day 191 - Christmas Eve

Today really started yesterday evening. I finished weaving the towel, but needed to finish it which requires two hems, washing and ironing.  The sewing machine is on the third floor so I trucked upstairs, discovered the only thread we had was black. Back down the stairs, search through the storage room. None anywhere, but I did find another spool of black. Those of you who have been to my house and seen my kitchen table will not be surprised to hear that just as I was giving up, I saw a spool of white out of the corner of my eye. Right next to the pile of Ellie's school books, the WD-40 and the bottle of maples syrup we're planning to send to some friends abroad. Our table organizational scheme is completely impenetrable.

Back up the stairs, wind a bobbin, thread the machine, hemstitch one edge, pin it (a nuisance is that I only own three pins. I'm not sure what happened to the other 97 in the package, but I only go to Joanne Fabrics 2 or 3 times/year and never remember when I'm there!), iron it, fold it over again, pin it, iron it, sew it. Same thing on the other side, except about three inches shy of the last hem, the machine jammed. Usually when this happens, it is because I have mis-threaded it, but it turned out that the spool of thread had--somehow--been wound so that it had two ends, one of which eventually wound under the other so that there was no way to continue unwinding it and the other which I didn't notice until I was forced to by the jammed up thread. Problem eventually solved and off to bed for me. 

It's somewhat odd because for the big things, I am good at getting myself quality. I have a pretty nice sewing machine, a great iron and a first rate pair of sewing scissors.. However, I do not have a full collection of thread or more than three pins. When someone understands how this makes any sense at all, could they explain me to me, please? 

Here it is, all folded, ironed, etc. you can see a little of the hem in the left lower corner. Not bad, right?
The next morning, I washed the towel while I got ready for work, laid it out to dry after carefully arranging it in a rectangle (this is where you can compensate for the flaws if the edges are not quite straight). I was the provider at the hospice house. It is really fun to do patient care and to be back there with my friends. In describing my day, I told Emily everyone survived and she said she thought that was kind of unusual in a hospice house. I get no respect. 

When I got home, I ironed it and yes! it was done in time to take to Patrick's 2-5 open house as a present which had been my goal. Clearly, just in under the wire. 

Patrick's open house was very fun. His to-be daughter in law made cheese puffs as we watched (I had made them the previous night at home by coincidence and I am not ashamed to say hers were way better, but I picked up some tips) and there were oysters and pate and delicious wine and cookies and lots of people to meet. I am always astonished to be in a group of people in the seacoast and not to know anyone, but it happened tonight. I always like that. Many of the people there knew a lot about traveling in France so we were able to get some tips on where we might like to go besides Paris. It seems people really recommend Provence. 

The day was not done yet. We went to Tommie's for Christmas Eve dinner, starring shrimp and scallops from the Ipswich Fish Market. I helped Ellie finish wrapping her presents on Tommie's big craft table and off to bed. I must admit that I was tired after yesterday, but I figure anyone would be, right? I really don't think it's because I've gone back to work too early. And--I did leave after four hours on the nose. I was up too late the night before but that was because of the stupid thread. 

My computer seems to have been hijacked:
hello my name is ellie i am cute. i am talented. i am amazing. my mother is wierd. 
back to its rightful master.

In the spirit of full disclosure, I am writing this as though I were writing it on Christmas Eve, but I was such a social butterfly, I didn't get to it until Christmas Day. I don't feel right making a wish for a day that has already started somehow for myself. But, for you, I hope you have and are having a wonderful Christmas Day if it's something you celebrate. If it is not a holiday you celebrate, I hope you are having a wonderful day anyway. 

Sunday, December 23, 2012

Day 190 - pain is a cuase of delirium

Today was another relaxing day without too much excitement in my household. Ellie had a friend stay over and even at 10:30 (after more than 24 hours together), they were not happy to be separated. I'm so glad it's vacation! Emily and I went to Starbuck's and then I took Maggie for a 3.2 mile walk. You can see the results below.

Yes, a long walk in the woods, turned Maggie into a dog with glowing green eyes. Note the one arm draped over the side of the bed.

One of my old patients stopped by to drop off Christmas cookies and to see how I was doing. I really had a clinic full of the nicest people in the world. She had not gotten the letter from Dartmouth because it did not go to people who switched their primary care doctor and she was worried about me and wanted to see for herself how I seemed. Fortunately, no one who looks at me is worried any more. You can see the incredible cookie plate below.



Additionally, I felt all homemakey and make a batch of cheese puffs which are rumored to be difficult, but not at all. Also, more weaving. It is really a tight race. I am almost finished, but have at least two more stripes to do, followed by the finish sewing. I am not a good sewer. That doesn't look very good. I don't sew well.

As anticipated, I do have more to say about the Dec. 20, 2012 NEJM. There is a Perspective article that is absolutely the best Perspective I think I have ever read. The writer is a pediatric oncologist and he writes about how people always say to him "How could you do that work?" This is a question we, in hospice, hear a lot as well. His answer is broader, however, and says eloquently what is special about doing anything in medicine. Unfortunately, it's only available to subscribers. If your hospital subscribes to the NEJM, it's worth taking a trip to the library to see it and if you are at HHH, I will bring it in to circulate. There is also a nice article on celiac disease. I did a morning report on celiac when I was a resident and it looks like there has been tremendous progress in understanding the pathophysiology of it. That is very nice to see; kind of like an acquaintance's kids who you haven't seen in a while are now in high school and very accomplished.

There were a bunch of articles that did not interest me, but there was one that really got my attention, "A Man with Alcoholism, Recurrent Seizures, and Agitation." It was a CPC, where they present a case and then have an expert discuss the differential diagnosis, come to a conclusion and then they discuss the management of that particular patient. Spoilers ahead if you don't want to know the diagnosis. Obviously, it was alcohol withdrawal, but notably, the patient was very delirious and it lasted longer than you might expect. It turns out that he had a hip fracture, sustained during his seizure. I was very disappointed that the article did not take the opportunity to discuss pain as a cause of delirium. In fact, I thought it was very 1980's of the NEJM. I wrote a letter to the editor about this issue, couching it in slightly gentler terms.

The combination of two recently published articles: the NEJM neglecting to mention pain as a cause of delirium and the JPSM article about how half of all palliative care docs have been accused by other doctors of euthanasia or murdering patients makes me angry. Doctors who did not get a background in palliative care in med school and who have chosen to avoid it as a CME topic make ignorant statements like "palliative care causes people to lose hope," or "we can't treat that patient's pain because opioids will make her delirious" or "benzo's will work better for her shortness of breath than opioids." The NEJM missed an opportunity to help educate a wide physician audience in a slightly paradoxical, but tremendously practical medical problem. Shame on them. Again, if you subscribe to the NEJM, I'd encourage you to read the article and send a letter to the editor if you agree.

For me, for tomorrow, I am going to wish for more wide spread knowledge about the benefits of palliative medicine. For you, for tomorrow, I will wish for progress in an issue that is near to your heart.

Saturday, December 22, 2012

Day 189 - reading recs


It's a good thing I've been reading lots of interesting things because my life has been beautifully dull today. Terry and I did our pre-leukemia normal thing to do on Saturday morning which is to visit the Beach Pea, then his studio. I spent most of the day doing crossword puzzles, reading and weaving. You can see the tea towel starting to look like something that could be a present rather than a snarly mess. Hopefully, I'll finish it in time!

A couple of days ago, the NYT ran a huge story with all kinds of cool graphics about a free-skiing episode (free-skiing, for the horribly out of touch, like me, is skiing on the ungroomed, unmaintained sides of mountains). This happened in the Cascades and 16 experienced skiers started at the top and three of them died in an avalanche by the time they got to the bottom. What was interesting to me about it besides how fast an avalanche can go--this one topped out at 65 mph!--was to think about how this could happen to a bunch of experts in free-skiing. As you read the article, you think about how it sure sounded like the avalanche conditions were too unstable to make skiing safe, but they go out anyway. Then there are sixteen people at the top of a huge mountain and no one says, "Gosh, the conditions are ripe for an avalanche and the more of us that ski, the more likely we are to trigger one. Maybe we should think about plan B." I can imagine being in a similar situation (not an extreme sports situation because that is not my bag), but a situation where there is a group of people and we've planned to do something that may not be a great idea, but I think "Well, everyone here knows so much and if it were a bad idea, surely some one else would have said something." So, I don't say anything and everyone else is probably thinking exactly the same thing so we do something that is a less than stellar idea. It's interesting how groups of people do not act like individual people multiplied by N.

The other interesting thing I have been reading is this week's NEJM. I may have more to say about the rest of the journal, but I was astonished to learn that currently, for uncompensated care, NH gets reimbursed an average of $629 per patient-day. The next closest state is Louisiana at $400, then Maine at $308. Whoa! I wonder what the formula is that favors NH so much and I wonder how it was established so or maybe our uninsured people are just that much sicker than they are anywhere else in the country. The article was actually about how if states do not opt in to expand Medicaid, their hospitals that serve the uninsured (who would have been insured if the state had expanded Medicaid) are really going to be squeezed. The internet says that NH is in the states "leaning toward" expanding Medicaid. I don't know if this is a reliable site or not. I am surprised that whether we are expanding or not is not more widely known, but it seems to be an issue flying completely under the news radar.

I was perfectly happy with a non-newsworthy day for me and will wish to have a second relaxing, quiet day tomorrow. How about you? I hope you are not making yourself crazy with holiday frenzy and will hope for relaxation for you, too.

Friday, December 21, 2012

Day 188 - a visit to CMC

And, thus concludes our heroine's first week back at work.  I cannot believe that I failed to take a picture of myself on all three days, gussied up for work, but here is what I looked like at 6 pm on Friday.
I had had a full day at that point so I think things are going pretty well. This morning I went to work and did my work thing. That went fine. At the end of my day, I had to sign some paperwork at CMC and after I finished, I thought I would go visit some of my pals. No one was going to be all that productive on Friday before Christmas anyway so I wouldn't be disturbing productivity too much. I stopped in to see the pathologist who diagnosed me. He saw me at cancer committee the day I was diagnosed and tells me that I look much better now. I'm sure my peripheral blood smear looks better too. Next, I stopped up to see one of the administrators and it turned out his secretary did not know I had been out. The admin she works with knew the whole story so I had assumed she did, too. She said she just figured that I stop up from time to time and that I just hadn't had a need to stop up in six months. She was glad to hear that I was well and almost started crying when I told her I had leukemia even though she could see I was quite well now. She said it was good she hadn't known I was ill until I was better as she would have been so sad. I had only been at CMC as a patient in the past few months. It is nice to be resuming my old roles.

I am definitely more tired than I am on the average day I don't work, but still I feel it's not out of control tired. I told Dr Hill that I was not sure that I really understood that I had been sick, despite being in the hospital, having fevers, having no platelets, etc. I'm not really sure that the knowledge totally penetrated my skull.

After CMC, I came home and we did the NYT crossword, followed by a little weaving. Look! It no longer looks like a snarly mess! It almost looks like it could turn into a nice Christmas present, doesn't it? It better do so, on the double, as Christmas is only four days away now.

For me, for tomorrow, I will wish for happy family together time. For you, I will wish for relaxing time with those you love.

Thursday, December 20, 2012

Day 187 - work again

It's amazing: four hours of work, plus a commute, plus a little email about work adds up to nearly a full day. There was just a little time left over for weaving and dinner. Tommie discovered The Ipswich Shellfish Fish Market and if you like scallops or shrimp or probably just about any other kind of seafood, it might be worth a trip. We had delectable cold, grilled shrimp while we watched Tommie cook the incredibly fresh scallops. I cooked the salmon, but something had gone wrong with it and it tasted very odd (not old, more like chemical-y) and then we all tried some flounder at the end (I was underwhelmed by its delicate flavor). However, the shrimp or the scallops were so fabulous that there was no need for anything else to make an outstanding meal. Tommie also brought salad stuff over and it was surprise! dinner.

As for work, all the HHH providers got together today to talk about how things were going, what I had missed, what we were hoping for in the future. We hardly ever get to spend much time together because we are always going off in our individual directions. I also spent some time with a patient and her family. We were not really planning on me doing direct patient care yet, but it just worked out that way and I'm really glad it did. If I had had a particular day set up as The Day that I was going to start doing patient care again, I would have tied myself in a knot about whether or not I would still be able to do it. This way, no problem, it was very natural for me to do it and I did. It seemed like it went well, so I guess I can cross that worry off before I even begin to worry it; I do remember how to talk with families.

An interesting thing that happened was that while I was talking with the patient, I felt a couple of times "I so understand what you are saying; I felt exactly that way, too" and I felt the impulse to blurt out my story. Of course, it's not about me and it would not have been even remotely useful at this point so I reined myself in. I can see that I will have a little processing, as they say, to do before I go back to doing lots of patient care.

For me, for tomorrow, I will wish for eloquence and skill to convince my boss of the wisdom of my ideas and plans. For you, for tomorrow, I will wish for eloquence to ask for and get what you need from the important people in your life.

Wednesday, December 19, 2012

Day 186 - new shoes

Today I had lots of little paperwork-y kinds of things to do: a little disability stuff, lots of emails and I did the first draft of questionairre for primary care docs and case managers at Dartmouth about what they might want from an out patient palliative care clinic. That was really fun to think about and to try to imagine what people might want to tell me as well as what the information I would like from them. I was one of the first doctors in Bedford so helped start that clinic, but since I was doing primary care and it was a primary care clinic, it isn't quite the same level of newness as a new clinic in a specialty that we haven't really had in Manchester that I have not practiced in an out patient setting previously. Fortunately, Dartmouth has lots of experience setting up lots of different clinics so I think it will be OK.

I keep getting really nice letters from my old primary care patients. Today's letter seemed very wise and closed with "I wish you the best in the future as you provide professional care with eyes from both sides of the situation. It strikes me that the new focus will have both joy and loss. May the sense of doing a good job run through both." Sometimes, I can't believe that I am leaving such a fantastic group of patients. I have to remind myself that I am going to be providing a really valuable service that is not widely available at this point. If I think of it that way--as a useful service to the community, it helps.

Other activities for today were early morning coffee with Patrick and shoe shopping in Portsmouth with Emily. I have a pair of Dansko's in every office, but none at home. Today we decided to fix that. After six months spent mostly wearing sandals, I appreciate the ability to spread my toes out more and more and the small toe box shoes I used to wear are just not comfortable. I was wearing my running shoes to go grocery shopping and that is not good for the shoes, my feet or my pocketbook. Thus, new clogs.


I also did a little weaving--will I be done with the project by Christmas? It's a race! Some journal reading--nothing worth commenting on. Then, for dinner, we went out with Tommie. A very nice day sandwiched between two working days. I can honestly report that I am not feeling anxious about bizarre things this evening because of back to work tomorrow. The other night, I had several anxiety dreams and in one of them Emily was having a bad dream and cried out. I went to her and woke her saying (in my dream), "It's ok; it was only a bad dream." Some one else having a dream in my dream; I thought that was a pretty good nesting.

For me, for tomorrow I am going to wish for a continued sense of competent usefulness. For you, I will wish for the same.

Tuesday, December 18, 2012

Day 185 - normal thoughts

The whole return to normalcy thing is just like quitting smoking has been described to me. You don't just quit smoking once, you quit smoking over and over in every situation in which you used to smoke: after dinner, when you're angry, when you're anxious, when you're bored, while driving. You get back to normal in every situation, too. When Ellie and her friend and I were playing in the snow, I got hit by a mixed snow and ice ball. In the eye. It hurt a lot, my eye watered and I couldn't convince myself to open it for a while. My first thought was o, no! platelets! followed a second later by a realization that I am actually normal now and don't have to worry about anything different from what I've worried about my whole life. I will have to realize I'm normal in every situation: hit by snowball, cut, around people coughing and hacking, when I get a virus, etc.

Day 185 - first day back

Back to work went well. Everyone was happy to see me, there was useful stuff for me to do and I felt like I knew what I was doing. My anxious worries that I even knew ahead of time were stupid did not come to pass. I managed to do OK even though we were out of coffee at home (it's coming in the mail tomorrow), I got there right at 8, I remembered my snack, it didn't leak or have so much condensation that it was a huge nuisance, I actually wasn't hungry midmorning anyway, there were enough computers to go around,  etc., etc. I am more tired than I would have been after a morning at home, but not outrageously tired. I got out on time. I stopped at Swann's for coffee with Eva on the way home and I was even able to walk downtown with Emily in the afternoon. So, I think back to work is going to be OK, but will build up my hours slowly.

On my commute, I listen to a lot of different podcasts and continuing medical education lectures. I don't really mind my commute because I feel I get a lot out of the time I spend in the car. Today I was listening to a lecture on "communicating bad news" and I was surprised to discover that I felt I really had info to add to the lecture. There were several points, but the most notable was when she was talking about how a lot of doctors don't like to deal with patient or family emotions and how if you brush them aside, they'll come back and bite you later anyway and how the family may not remember any information you give them, like prognosis or where the mets are or which labs are goofed up, but they will remember how you dealt with their emotions. I actually felt like a related issue was that at the times I was feeling a negative feeling towards my doctors (usually abandonment because that is my specialty), I didn't really want to talk about chemo or fevers or meds or symptoms. I wanted to talk about whether or not they were going to abandon me and how they better not do it again. We know that sometimes our patients come to us with very negative feelings about other doctors or often doctors in general. I have had the experience more than once where the family will want to talk about some prior situation and will need to recount the story with me being a sympathetic ear before we can move forward into the next step. I think it is the same phenomenon as I describe above.

Another talk that I listened to was "Zencast" which I highly recommend to everyone. Gil was talking about how being grateful is a good habit to get into and how people who were grateful and appreciative were happier, slept better and had a whole bunch of other benefits I don't remember. It made me think about how I close each post by hoping for something for the next day. After listening to him talking today, I considered instead of wishing for something, listing off the things I'm grateful for. That seems kind of sappy to do publicly and besides that, I really like the way I end the pieces. I think Gil would ask if I were living in the future because I think every post of how the future could be improved compared to the present. I wonder if he would say that this sort of thinking encourages me to be dissatisfied with the present because I have made it a routine part of my day to think of a way in which the present is not as good as I would like it to be. And, yet, I do not find it to be so. I think of it as "hopeful." How does hopeful fit with satisfaction with/acceptance of the present? Should I consider changing my practice of closing with wishes?

For myself, for tomorrow, I will wish for a sense of gratitude for all the gifts in my life. For you, for tomorrow, I will wish exactly the same.

Monday, December 17, 2012

Day 184 - p.s.

I just read a retrospective of Daniel Inouye's life that the NYT put together in respect of his death. I went back to see if I could just quote the paragraph verbatim, but they seem to have updated the article and taken this anecdote out. They talk about an incident where a Hawaii family called him in the middle of the night and asked for his help getting their son home for a family emergency. He made some calls to the Pentagon and had the soldier on his way home within an hour. He said that helping them out was a pleasure that not everyone was able to get to experience. That is exactly how being a doctor feels; I thought he said it very well. Much of our work is such a pleasure and it such a privilege that a very small minority of people get to experience. 


p.p.s.Found it! Burlington Free Press:
He said he once was awakened at 2 a.m. by a telephone call from a Hawaii family asking for help in getting a soldier home for a family emergency. Inouye said he immediately called the Pentagon, and 30 minutes later the soldier had his orders to return home.
“That’s a special type of satisfaction that I can enjoy that none of you can,” he said.

Day 184 - more snow

A little bridge over the Exeter River
As I write this, I am actually kind of tired. It was a snow day in Exeter and Ellie had a friend over. They built a snow fort a little ways from our house and I was invited for a tour and then put to work providing the raw materials--snowboulders. I stayed out with them for maybe an hour moving snow around and trudging through the snowy fields. We arrived home later: cold, wet, and very pleased with our handiwork.

A little later, we walked downtown to find out if Emily and I like Orange Leaf frozen yogurt and to demonstrate that Ellie's friend does like it. Ellie doesn't, so we stopped at Stillwell's for her. In general, I really like Stillwell's, but haven't since chemo as it *still* doesn't taste right. Some sweet things taste OK, but most still taste "off" to me. I am not sure how long this will continue, but I'm kind of tired of it. It is a very funny feeling inside when I see some delicious treat and think "I'd like to try that" and then my brain says, "you won't like that. Not for you." The dissonance between part of my brain saying "Yes!" and part saying "You don't really want that." is very weird and unsettling. I will be glad when it's over. To answer the question, I did like Orange Leaf OK, Emily felt similarly.

The new shower head came in the mail today and Terry and I spent an alarming amount of time trying to get it in place without leaking. It is pretty extravagant--two shower heads.

Tomorrow I go back to work. I am happy and excited, but there is a part of me that is inexplicably anxious. I found myself worried about getting there on time (as if anyone cares if I arrive at 8 or 10); worried I won't be able to eat my mid morning snack (again, as if anyone cares if I am eating while we are talking) and worried that there won't be a place for me to work (there are plenty of people who aren't around every day--there will be a computer for me somewhere). I can absolutely recognize these as the sorriest and most bizarre set of worries I've seen in a long time, but there you have it. I am not sure if it is progress that I have moved beyond worrying about if I'll remember any medicine to worrying about minutia which is not even problematic. Clearly these weirdo worries must be stand ins for something, but what? and why not just worry about the real worries?

For me, for tomorrow, I'm hoping for a good first day back: to feel useful, competent, happy. For you, I will wish being happy in your profession or education as well.

Sunday, December 16, 2012

Day 183 - Snow

Don't you think everyone on my list would like a snarly mess for Christmas?
 I would have to say that the highlight of today was going for a walk in the snow. About 1 inch stuck and it was still snowing lightly when we went out. Maggie was so exhilarated by the cold and snow, she could barely keep herself from running, rolling, tearing around the whole time we were out. Ellie was similarly effected and spun around on her feet, ran and rolled in the snow. On the football field by our house, Ellie ran to one end and Maggie chased after her, then we called her back and forth as Ellie came back. It was a real life demonstration of that stupid algebra one problem everyone has to do, but it was beautiful in the falling snow. Maggie enjoys running full tilt right at you and then at the very last second, veers off by a tiny bit so she doesn't run into you.

Emily and I did the Saturday NYT puzzle pretty handily and then became backers of the new American Values Club crossword puzzle and did our first one. It's made by the people who used to do the crossword in The Onion so you know to expect puns and a little (or more) raunchiness. The first puzzle delivered. It promises to be a very clever weekly crossword and is not very expensive. If there is a crossword lover on your list, this might be just the thing. Emily is getting it for Christmas.

I finally got the warp for my next project on the loom today as can be seen above. There was quite a while where the whole thing was a snarly mess, but it all sorted itself out. Speaking of messes, the hose leading from the wall to the shower head burst this morning while Terry was taking a shower. Normally, we just call our landlords, but as we had already altered the shower head once, we felt this one was our problem. Nothing starts one's Sunday morning off like a trip to the hardware store. Later, a trip to Starbuck's and Stop and Shop rounded out the day.

Like everyone else, I don't know what to say about the horror in Connecticut. I hope it gets us moving towards taking semi-automatic weapons out of circulation.

For all of our wishes tonight, I am going to wish for whatever measure of comfort can be felt by the folks involved in or affected by the shooting.

Saturday, December 15, 2012

Day 182 - palliative care

On the other six month anniversary (June 15 to Dec 15), I pretty much just had a nice time. This morning Kate, Terry and I took one of her dogs and Maggie out for a walk at her family's Christmas tree farm. It was nice weather, nice company and nice dogs. We had a good time. A while later, after a little bit of general hanging around, Emily and I went out to get our Christmas tree. A little more general hanging around and then it was dinner time. Tommie took us to Blue Moon to celebrate her art show being successful--yum--and then home to decorate the tree. Not much to the day, but quiet fun.

Sunday, Monday and then my first half day back at work. I will go back to Home, Health and Hospice first and the work I do there will be the same as before I got sick.

I have not been able to talk about what work I will be doing at Dartmouth until now, so let me do that. After a lot of thought, I have decided to stop being a primary care doctor and instead to help Dartmouth start an outpatient palliative care clinic in Manch. I have loved being a primary care doctor so much and am really sad at not being able to do it any more, however I can't do both and right now I feel palliative care is calling. Some of my patients have been with me all eight years I've been in New Hampshire and I have been through big stuff with most of my patients by now. They are attached to me and I, to them. I will miss them very much. I do feel, however, that a palliative care clinic will be a tremendously helpful thing to have in Manchester and I am thrilled that I get to help start one. I think there are a lot of patients we can help in such a clinic and thinking about that mission helps me feel a little less sad about my clinic patients.

We sent a letter to my patients last week. Dartmouth had not told my patients why I was out so I told them I had leukemia, chemo, etc. ; I was sure they would like to know. I also told them I was starting a palliative care clinic and that I would not be able to do both palliative and primary care, that I would miss them and tried to explain why I felt it was important for me to be doing a palliative care clinic. I was expecting to get some negative feedback from some of my patients, but it has not materialized. I got my first patient feedback today in the form of a Christmas card from a patient who said she was shocked to find out why I had been out and was hoping for the best health for me and then continued to say some embarrassingly nice things about me. Once again, I am blown away by the kindness and good spiritedness of my patients. I have been and continue to be extremely fortunate.

My wish for me for tonight is that my good luck continues. For you I wish for similar good fortune.

Friday, December 14, 2012

Day 181 - six months out

Today makes exactly six months since my diagnosis. At this time on June 15 (tomorrow will be six months by dates, today by days), Terry and I were driving up to Lebanon, feeling shell shocked. I had had my bone marrow earlier in the day and just gotten my hair cut. In another couple of hours, I'd be meeting Dr. Hill. What a scary, overwhelming, numbing day it was. To make it even worse, it was the day after Terry's birthday and Ellie's first day of summer vacation.

I had stayed home from work that day and called the people who really needed to know right away to tell them I might have leukemia (mostly my various bosses and office manager). It looked at first like the problem may have been bone marrow suppression and I remember googling and seeing that almost everything I was taking could cause bone marrow suppression (zyrtec, singulair). When Dr. Reem Shafeh, my PCP, called to tell me that the initial confirmatory tests were consistent with leukemia, I was quite surprised. I had myself totally convinced it was all medication side effect. Terry drove back from his studio and then we went to Manchester where I had my first bone marrow biopsy. He talks about how everything had changed in the time from when he drove up to Kittery and when he drove back home. The people at the Norris Cotton were so kind, whisking me into a back room, doing the procedure very sensitively, freeing a lab tech to run the slides over to CMC, distracting me for ages while we waited for Dr. Sanford to read the slides. I'm not sure we had any sensible questions to ask after we got the diagnosis; the whole thing was such a fast forward blur. The only thing I remember asking was if I would lose my hair. I really felt like I didn't want to lose my hair to leukemia; I was going to get it cut before the leukemia could take it. On the way home, Terry called his hair cutter and she actually called her last appointment and explained the situation and asked her to come in half an hour later so she could cut my hair. We told the girls, packed me up and then we all rushed off to the haircut. Afterwards, Terry and I left the girls home while we went to Lebanon. Long ride to stew about what the heck was going on. I was perfectly healthy and had been sure that the cancer I would end up with was breast cancer. What was I doing with a blood disease that old people get? that I knew next to nothing about? in my forties? when I was so busy and had lots of other plans?

That day in some ways feels so recent, some of its details seem sharp and clear, but most are completely fuzzy. Last summer was supposed to be the summer that Ellie and I had a really good time. In fact, I had scheduled a lot (for me) of time off and we had reservations to go kayakking the Tuesday I got my last dose of donarubicin. Needless to say, we didn't go. I think I missed my window for kayakking with Ellie. I hope we can find something fun to do together this summer.

From the past to the future and now, to the present. It was CHH Christmas party day today. I went and had a marvelous time, scoring a pair of fabulous tatted stars. Don't know what tatting is? Follow the link; it's super cool. As always, it's so fun to go by the hospice house and see everyone.  I always feel recharged. I had a classic middle aged experience while I was there. I met the new priest who is three years out of seminary and I thought, "there is no way he is old enough to be a priest." It is very odd he is "Father" Chris--Father? He could almost be my son. It has been a while since I had that experience. There used to be a doctor in Exeter about whom one of my patients said, "Don't you have to be old enough to shave to go to med school?" I was reminded about how I cultivated my first gray hairs when they showed up a few years ago. Now I no longer need my gray hair to avoid looking like a pipsqueak.

Next stop: the administrative office of home health and hospice to say hi. Then, I visited Tanya and helped her with her loom. An observation: I was willing to just sit next to her and stare into space while she pulled 24 threads through the heddles and then again while she pulled them through their dents. Prior to the leukemia, I would not have been able to do that. I would have jumped up and wandered through the building or taken Tanya up on the offer to show me how to make a centerpiece. Now, I can sit quietly and wait. It wasn't even like I had anything in particular to think about. Being a patient has evidently made me (ahem) more patient. On the way out, her landlord said hi and somehow got to telling us about his brother, "I once had a brother who didn't do anything but complain. I used to tell him that we are living in the most wonderful time and place ever and how could he be anything but happy?" He also told us that the mill building in which Tanya has her studio is essentially unchanged "since Lincoln was shot." Two old New Englanders in one week. A recent record for me. When I was a PCP in Exeter, I would see at least one old New Englander in each half day. I miss that part of practicing in Exeter. The final bit of today's news is that Emily is home for the next month or so. We are very happy to see her, Maggie included.

Here is a really beautiful six minute video about memory loss. It is embedded in a blog post by Robert Krulwich, a science journalist whose work I admire.

For me, for tomorrow, I will wish for some happy, relaxed family time. No crises, no surprise hair cuts, just a Christmas tree and a celebratory dinner. For you, I will wish a happy day without unpleasant surprises.

Thursday, December 13, 2012

Day 180 - more Unaccountable

In another demonstration of why I need to get myself back to work, I am completely unclear on what I did with my day for the most part. I visited Terry and we went out for coffee and a nice chat. Afterwards I went for a walk on the beach. It was really beautiful--all 1.5 miles of brisk stroll interspersed with stops to view various shells and other debris--and, oddly, was warmer than downtown Portsmouth. On the way home, I stopped to see Nancy at C'est Cheese and stayed a while. It was incredibly busy and they kept starting to help me and I kept letting other people go first because I was not in a hurry and I didn't want people who were busy to wait while we discussed my first post chemo hair cut. She had only the tiniest sliver of double creme brie which was a big disappointment. She was explaining how Sandy was a disaster for the food industry because it wiped out two thirds of the docks that food importers usually use. She was just getting things she had ordered for Thanksgiving so the fact that she was due to get more brie tomorrow was no comfort. I will prize the portion we got. It's funny, when people heard "first post-chemo haircut," everyone in the store congratulated me. One of the women there talked a lot about how she had a couple of friends with cancer (she appeared to be about 55 years old) and told me that she always tells her friends with cancer that we're all going to die, that they just have a better idea of when and from what. I was not sure if that was supposed to be comforting, but smiled and nodded. It is actually not true in the case of leukemia or, actually, a lot of cancers, but hopefully her friends take it in the spirit which it is offered and it at least does not make them feel worse.

Earlier this week, Ana gave me a game called Pictureka. Ellie saw it and asked to try it out. If you ever find yourself playing a game with Ellie, take this hint: if she starts an argument with "who's to say," even she does not believe it.

It's been a while since I've given you an update on "Unaccountable" which I am still enjoying. The next section of the book is devoted to stories about what happens when the public finds out things like the mortality rate from CABG at various hospitals. NY decided to publish these and he describes how one hospital lowered its mortality (sorry I don't know in what timeframe) from 26% to 7% over a three or four year period. Statewide, the death rate fell by 41%. (Relative rate, not absolute. Still, it's good stuff.) He talked about Johns Hopkins' CEO finding out that the cardiac surgical ICU (I love how these tertiary hospitals have an ICU for not just surgery, but surgery on a specific body area) was a dangerous place with a high turnover. He made a point to round there every week and talk with the staff and found out things like there were dirty lights in the operating room and the staff did not feel comfortable calling a surgery off until they got cleaned and the cleaning people wouldn't do it anyway. After fixing the root cause of these sorts of problems, things really improved there. The author also cited the Walter Reed Hospital as a place that improved after public scrutiny.

The next chapter was devoted to a story about the former Shah of Iran and how he needed his spleen removed and got it done by DeBakey (of DeBakey forceps fame). In fact, he insisted it be done by this world famous surgeon. Unfortunately, the surgeon was a world famous cardiothoracic surgeon and the spleen is not in the thorax. DeBakey did the surgery anyway and varied in technique from the usual way to do it which almost certainly caused the Shah to end up with an infection and a hugely complicated recovery. He was getting this surgery at about the same time as the hostages were taken in Iran and the author wonders how much the fact that the Shah was weakened by being sick played into that international situation. His point is that you want the person doing your surgery to have done a lot of them before. The fancy pants-est surgeon may not be the best choice for the job. We were told a similar story about the chief of anesthesia at the Mayo Clinic and a middle eastern ruler when I was in medical school.

I have had very few VIP patients in my career although once as a student I did a physical on the governor of a state of Venezuela who traveled to MN to get a yearly physical in the Spanish speaking clinic I was rotating through. No one told me he was a VIP; he was next in line so I did his physical. What he got from me (the inexperienced med student) that he hadn't gotten all these years from the (I guess) semi-famous Spanish speaking doctor he traveled all the way to the U.S. to see was advice to quit smoking. I don't know if he quit or not, but I suppose this is an example of the attending not adhering to standard of care.

Marty Makary in "Unaccountable" next talks about open vs lap surgeries and how sometimes a patient will get assigned to a doctor (for instance, it's Dr. X's night to pick up the ED patients) who doesn't do the surgery they need laprascopically and then the patient will get stuck with an open procedure and the collection of risks and complications that go with that. He talks about how much better it would be if proceduralists would refer to other proceduralists if the best procedure for the patient was one they did not perform. I can honestly say that I feel the local doctors are quite collaborative and collegial and refer patients to each other if that would result in a better procedure for the patient. Of course, I have visibility into a fairly small section of medical practice in Manchester, not any huge view. We are now about one third of the way through "Unaccountable."

For me, for tomorrow, I hope simply for a fun day. For you, I'm not sure. You may want a more substantial wish than two days of fun in a row. On the other hand, fun is good, so fun you get for tomorrow's wish.

Wednesday, December 12, 2012

Day 179 - clip shop

Today had one very momentous event. Here are the before and after pictures:

Before
After



Yes, my first post chemo haircut. I was a little self conscious in the barber shop taking my own picture, thus the goofy expression. Since my hair is so short now, I decided that I could go to a short hair expert and tried out Jim, the barber next to what used to be The Baker's Peel. I must admit, I'm feeling very New England-y because I refer to the bakery that has been there for two or three years by what was there before. I have not been in a barbershop ever that I remember. It was a really different experience from a hair salon.

All the customers were at least 70, mostly I'd guess were over 80. There was a tiny little dog who lived there and snuggled on my lap for a while. A friend of the owner/barber came in, sat in a chair which was evidently there specially for him and talked for about thirty minutes. He would accept comments from those sitting in the shop, but certainly held the conversation up by himself for the whole time he was there. After he left, I listened to the barber and a customer discussing the customer's impending blindness. He currently had one eye only that could see only red and light. He talked about how he hated the word "blind" and would never call himself that, no matter if he lost the rest of his vision. He talked about how lucky he was because his wife of 60 years helped him out so much and he didn't know what he would do without her. While he was having this conversation, his wife and another customer were talking about how crazy it is that everyone gets all worked up about the first snow of the year, regardless of how much falls. Then the next customer had brought a sword and a couple of other artifacts with him that were made by an Exeter Revolutionary War silversmith ("a local craftsman," he called it). The barber asked him where the silversmith had worked and the customer said he didn't know exactly but it must have been right in town because he had been the postmaster for thirty years after the Revolutionary War. I was astonished that some one would carry this kind of trivia around in their head. It was really cool to see the beautiful work, too.

Then it was my turn and the barber was puzzled when I asked him to leave the top alone. He combed through it and said, "How short was it when you got it cut?" I told him that I hadn't had it cut, that it had all fallen out from chemo. I told him about the leukemia and he asked all kinds of questions about it. He had read the article about the little girl with leukemia who was getting a great response from the T cell therapy. He asked what I did for work and we talked about my being a doctor. I told him I was a palliative care doctor and he had not heard of palliative care so we talked about what that meant for a few minutes. This makes about the fourth time I have explained palliative care to someone I met casually this week alone. I feel like the academy should make me a roving ambassador. Anyway, I am pleased with my haircut and it was only $6. I'm going back for sure. The entertainment alone was worth well over $6.

Other activities for the day included an internet lecture on out patient palliative care, talking via Skype with a friend of a friend who wants to practice her English (native language Hungarian), and (finally) finishing the shawl. I started planning the next project (also for Christmas--better get going), but haven't done a single lick of actual visible work on it yet.

People who have heads for details (or who are on the cancer committee at CMC) will remember that the day I had my lab tests, my last day of work, I went to the CMC cancer committee. O, the irony, huh? Anyway, if I'd been totally with it, I would have gone back to work tomorrow because that is when the cancer committee is for this month. It is really weird to me somehow that the committee is meeting just before I go back to work without me. It did not even register with me that there was a meeting in August or October, but I keep thinking about this one. I will hopefully go to the February one.

For me, I will wish for an end to the most recent run of anxiety dreams. For you, I will wish for an event that gives you as strong a sense of place as I had today in the barber shop.

Tuesday, December 11, 2012

Day 178 - Portland and a partial poem

Ellie got an ipad for her birthday in September. She loves it and took to it pretty much like a fish to water. She was happy with it and was able to get it to do what she wanted so I did not really pay that much attention to it. Over the weekend, she was showing me a game and I noticed that her power was at 3%. I asked her about it and she said it was always at 3 or 4 % even after not being used all night. I did a tiny bit of quick troubleshooting, changed the plug, the charger, jiggled things and nope, none of those helped. Terry backed up everything on it (good thinking!) and made an appointment at the Apple store. We took it to Portland today and it turned out to be a software problem which the nice guy at the Apple store fixed--at least, we think it's fixed. It's yet another example of how if you don't know what's normal you can't know what's not normal. Ellie, while being so sophisticated about using her ipad in some ways, is utterly inexperienced and had no idea that permanently being at 3% was out of the ordinary.

After our jaunt to Portland, I made my first visit to the new Trader Joe's in Portsmouth. It opened while I was in the hospital and, in fact, Terry texted me a photo of the line on opening day while I was in Lebanon. I really like their frozen, completely made dinners so I bought a lot of them and filled up the freezer. It doesn't feel quite the same as a regular grocery store although I think they have everything a grocery store does. I can't figure out what makes it feel different.

After that, I went for a walk/jog/run kind of thing and did 3.3 miles with an average of 13 minutes, 10 seconds each. This is an improvement from my previous 14.5 minutes last time. Hopefully the weather will be good for a few more days and I can keep being outside. I like it so much more than being at the Planet Fitness. I will be curious to see what the exercise bike experience is like next time. Maybe I will be able to bike at the sixty year old level.

I read a little bit of the compilation poetry book. Today I read the poems that seems to be related to people who have died. I liked a bunch of these and one made me laugh. I am pretty sure I can't quote a whole poem without permission and with any missing, it wouldn't be funny so I can't share that one, I'm sorry. There is one called "Letter to an Ancestor" which I really liked and part of it made me think of a conversation I had recently.
"Now that
I've found you in the
Census Book, I can't help but
wonder why we never heard a
word from out your way. I'd have
asked where you went on your
honeymoon."
I was fascinated with genealogy for a year or two about ten years ago and spent a lot of time on ancestry.com imagining who my ancestors might be or what they would be like. At that point, I had Emily and two cousins whose mother was my grandmother's half sister for living "blood" relatives. I think I imagined that some dead relatives who I could learn about would be almost as good as the live ones I really wanted. Not so much, but a nice thought.

For me, for tomorrow, I wish for a fun beginning to my last week before returning to work. You could probably do with some fun, too. I will wish for a fun day for you tomorrow, too.

Monday, December 10, 2012

a weaving update


Here is the partially finished shawl on the loom. You can see the pattern which involves zigzags and diamonds pretty well on the bottom photo. The colors are more accurate on the top photo. I am probably going to be able to take it off the loom tomorrow. Just in time to get started on my next Christmas gift!

Day 177 - Ana and Accountability

The original plan for today was a visit to Ana with Maggie so we could all go on a walk and then the humans could go to lunch. When I woke up this morning and saw the rain, I immediately began backpedalling. We decided to still have lunch which was delicious at Golden Bowl, a Vietnamese restaurant that Ana had been introduced to by a Vietnamese doc at Dartmouth. I had vegetarian pho which I thought was delicious. Ana had these crispy noodles with chicken and vegetables in a light sauce that somehow had been infused with just a slight hint of a smokey flavor. I enjoyed mine, but maybe wish I had gotten the noodles. Next time.

After grocery shopping, there was not a whole lot of time left for interesting activities besides a little more weaving and some reading, still Marty Makary's "Unaccountable." I was thinking about what I read yesterday in the setting of the hypothetical procedure of toe reversal. My patients don't need this done very often; I have sent one patient to get a toe reversed, to Dr. A and have had patients get toes reversed with Dr. B, C and D before I met them. None of these patients have had problems with their toes since I've known them so I conclude that probably Dr B, C and D all do a good job.

I have had a couple of patients who have had their toes reversed by Dr. F in the past or who have had the related procedure of toe inversion by Dr. F. Dr. F works in a hospital a few towns over from me. I have never actually even seen the hospital he works in. I have seen maybe three instances of his work. In one instance, the reversed toe, spontaneously re-reversed itself; in another the inverted toe, partially de-inverted and was left as a huge mess and in the third, the toe became infected and had scarred in a not very pretty fashion. Toe inversion is a tough operation, however, with a high fail rate for anyone, although I have not seen any complications with Drs B through D. Remember, however, that my sample size is very small. I have seen probably less than 1% of Dr. F's work and maybe I just got a skewed sample. Dr. F is in a different hospital than me, perhaps the patients who have bad experiences with him get so frustrated they leave that hospital and come to me whereas the happy ones stay there. Maybe it's just random chance and the next patient of his I see will have a perfectly reversed toe or maybe a whole foot of them. Alternatively, maybe Dr F really is not a good toe reverser.

What should I do in this situation? If a patient were to tell me they wanted Dr. F to do their toe reversal, what should I do? Dr F certainly has a right to be free from being slandered by me and with so little evidence. I could not tell a patient to avoid Dr F and to potentially harm Dr F's reputation. I would be speaking based on three bad toes. And yet, I don't really want my patient to go to Dr F. People don't get their toes reversed unless their feet are in desperate straights and no one who is considering toe reversal would be able to use the foot afterwards if it goes wrong. There is not room for a "margin of error" and I want to spare my patients the possibility of a nonusable foot after surgery if I can. How can I balance my need to help keep my patients safe with my need not to libel Dr F? If my husband told me he was considering Dr F for toe reversal, I would say, "please don't." My patients deserve this same level of information from me, don't they? If a patient thought that I let them go to someone I felt was a substandard specialist, they would not be happy with me. I wouldn't be happy with myself under that circumstance.

OTOH, maybe it's not my job to keep patients away from Dr F. He has privileges at a hospital that is supposed to be monitoring his skill level, that has access to all his outcomes, not just three. Maybe I should just relax and trust that the system is working.

If I were at a conference, would I raise my hand saying that Dr F was a "menace"? Certainly, his results are much worse than anyone else I've seen, but I have seen such a small set of his results, maybe what I've seen is not representative. I don't think it's fair to say "menace," but exactly where would one draw the line? What if I had seen six of his toe jobs and they all had complications? What if I had seen one with a really really bad complication--a "never" event, like reversing the wrong toe? Or what if I thought he reversed toes that didn't really need reversing, that he did procedures that didn't need to be done?

Fortunately, it is hypothetical, as I hope was emphasized by the crazy procedure I made up. The next few chapters of the book describe what happened in New York after they made hospital's mortality rates for CABG public as well as some horror stories from Dr. Makary's own training years. It is good reading, thought provoking and I'd encourage you to pick it up. When I'm done, I'll lend it to you if you'd like.

For tonight, for me, I'm going to wish for continued good fortune in excellent colleagues. For you, I'll wish that you are able to get high quality medical care when you need it.

Sunday, December 9, 2012

Day 176 - Tommie's show

Tommie's show went really well. She made a lot of sales and was pleased to have much less to carry home than she arrived with. I renewed my acquaintance with a couple of local artists and had a funny experience. One of them told me twice which of the participating artists was the one who had organized the show. I couldn't figure out any reason that she would tell me this (twice) except that she was asking me to thank the organizer so I did. The organizer seemed surprised when I thanked her (it's probably a thankless job). When I told Terry this, he said that he thought she was probably pointing out the organizer because she thought maybe I would like to sell woven things at a booth next year. O! that's why! I completely misunderstood that one!

The show was pretty crowded and in the back room of the greenhouse. They have a winter farmer's market on alternate weekends there which I thought was a tremendously good use of the space and a nice thing to do for the community. There were several jewelers, a weaver (her stuff was really nice), a potter, a knitter, a painter, a felter, a milliner, two furniture makers, a maker of these really fun garden sculptures, and several others. And, the star, of course, Tommie. There was also food, but you had to pay for it. The crowd was very different from the crowd at Mobilia and several zeroes were missing from the prices. At the Mobilia opening, Terry and I could only identify one for sure customer, but at this event, lots of people (including me) were buying. It is interesting to think about how the show would have been different today if there had been a tray or two of delicious tiny cold pizza slices and maybe free cider and a "we're friends of the artist" vibe at the beginning (I'm imagining it opening with an opening type even). I don't know if it would have made more or less money, but the greasy fingers would have been a problem. I wonder if the "friends" vibe at the beginning would make the people who weren't friends feel less welcome or less happy to be there (if they didn't like the friends). Interesting to think about.

After the show, I had lunch at Loco Coco's Tacos with Terry. I had the grilled shrimp lime salad. I think I could eat only that for the rest of my life, happily. Wow, it was good! Then I went to Portsmouth and for fun went into N.W.Barrett Gallery. After having recently been in Mobilia, it was interesting to see that they had jewelry with similar themes, but way scaled down. Whereas at Mobilia, they would have a ring that looked sort of like a geode that was huge, say 2 inches by 1 inch for the jewel, at Barrett, they would have a ring that was reminiscent of a geode, but in a smaller, more practical size. It is interesting to see the fashion themes (?) motifs (?) handed down and re-interpretted in various scales and with varying numbers of zeroes. If I were in Berkeley, I would walk down Telegraph Ave next and expect to see the whole thing re-interpretted at yet another price point. The other interesting thing was that not a single salesperson at Barrett said "boo!" (or "hello") to me. They were right that I was not in the mood right then to buy anything, but are they that good that they can tell? I guess so. I heard them chatting with other people in the store so it wasn't that they were completely non-communicative. After that I *did* buy some Christmas presents at other stores for people who read the blog so no more details!

The rest of the day was spent weaving and generally hanging out. We took care of Kita today who is Tommie's wheaten terrier. It is incredible how much personality terriers can pack into thirty pounds.

Hey, I've started reading a book Tommie bought me called "Unaccountable" which is about how, well, unaccountable health care systems are. The guy who wrote it says that at every talk he gives he asks doctors to raise their hands if they know a doctor who is such a menace that he or she shouldn't be practicing. I am either very naive, clueless or lucky because while certainly there are doctors who are better at thing X or Y and there are doctors that I steer my patients away from, there are no doctors I can think of who I would describe as "a menace." Anyway, he says that every hand in the room always goes up. I wonder if he is exaggerating or if there is peer pressure to raise your hand if everyone else is or if I am just naive, clueless or lucky. Thoughts?

For me, I will wish for good doctor skills and to never be a menace. For you, proficiency at what you love is a good wish, too.

Saturday, December 8, 2012

Day 175 - Target Cambridge

Today's main activity was a trip to Cambridge to Mobilia gallery to see Yoko's work. Terry knows her from urushi (Japanese lacquer from the sap of a tree similar to poison sumac). Her work (as you can see from the website) is exquisite. I had been to Mobilia a long time ago but somehow barely remembered it. It is a tiny storefront filled with mostly utterly gorgeous stuff, beautifully displayed. There was a wall of necklaces with trays and tray of rings under them. There was a tiny flock of brightly colored enamel (?) birds in one window recess. A small wall had a collection of teapots (they do a "Teapot Re-imagined" show twice every year) with the overflow tastefully displayed in the bathroom. Yoko's furniture was displayed along one wall and Susan's enamel vessels were on a table in the middle of the gallery. Behind her vessels was a table with Japanese food (a stir fry and these really cool tofu (?) skins that were stuffed with rice and had a bit of a delicate sauce on them) and little slices of pizza. The bathroom also had these incredible textile pieces, the aforementioned tea pots and several life size beaded pieces of consumer products like snicker's bars that were very funny.

The price tags were mostly not visible, but I didn't see any without three zeroes following the initial number. The people at the show were mostly friends of the artists, but I entertained myself trying to imagine who among the guests might be the ones who could spend that kind of money. There are so many different ways of being in the world, largely, completely invisible to me until we intersect for a second and I can catch a glimpse before the door between our worlds closes again. I only got to talk with one of the owners. She knew Terry and knew I had been getting treatment for leukemia so she was glad to see me up and about and looking normal. We talked about my going back to work and she had never heard of palliative care. She had heard of art and music therapy before and we talked about that some and I told her what palliative care was. She immediately thought of a person she knew who could have benefitted from palliative care. It was very gratifying to talk with her. Of course, it was also fun to meet all these people Terry had been talking about all this time and to see some of their work.

Earlier in the day, Ellie and I went to Target. There had been issues with not enough shirts in previous days so we had to solve that problem. Ellie has been wearing junior's size zero pants for quite a while because they fit better and have a selection of pants she'd actually like to wear instead of modified sweat pants. We went to the kids' section first and she found two shirts that she thought she might like. In the juniors section, there were five shirts. Of these lucky seven items of clothing, four were allowed to come home with her, all from the junior section. It feels like a milestone of some sort was passed today--all adult size clothes for my tiny little baby girl.

Nothing else of any real excitement happened today. Tomorrow is Tommie's show.

For my wish, I am hoping Tommie's show goes well tomorrow. For you, I will wish for a good outcome for whatever endeavors you have going on.

Friday, December 7, 2012

Day 174 - updated, tired, but happy

It's unclear to me why I'm so tired tonight, and it's also unclear why I haven't had a chance to blog yet today, but both are true and I'm going to bed now. I wanted you to know I'm fine.
-------
update:
I spent the morning being errand central, not much fun, but these things have to be done and it's best to get them done before one goes back to work. Then, our landlords came over because about two years ago the heat in the bathroom stopped working. It never really bothered us until just recently when Ellie started complaining of being cold in there. They determined that the problem is that the bathroom heat is plumbed with the second story heat even though our bathroom is on the first floor. When Emily (largely) moved out two years ago, we stopped needing the heat on the second floor so the bathroom heat stopped going on. It didn't bother us--in fact, we barely noticed) until this month and Monday Gary is going to re-plumb the heating so the bathroom is on the first floor where it belongs. It is funny how Ellie spending more time arranging her hair has led to Gary needing to re-plumb the heating system.

Later in the afternoon, Tanya and I went on a field trip to see the looms in "A Loom with a View" in Newburyport. The last time I was there, they had a big room with about six or eight looms in it. Tanya's loom needs a little refurbishing and we thought we'd go look at their looms and see how they were done so we could copy. As long as we were in Newburyport, we had to stop for delicious Indian food. I had Goa shrimp curry which is one of my favorite dishes to eat. I ate a lot, lot, lot of it when I was pregnant with Emily and when she was little at our favorite Indian restaurant in Berkeley, Ajanta. (Look at that! They're still open and thriving! One of my favorite memories of there is that Emily's favorite vegetable when she was three was cauliflower. We used to order her vegetable curry, but just made with cauliflower.) OK, back to the present and Newburyport. After lunch, we went to Loom with a View and they had moved to a smaller storefront and no longer had looms. So, we went on a field trip to Newburyport for Indian food. Totally worth it.

Tommie came over later in the evening to learn how to do credit cards on her iPhone. You need a special piece of equipment (square something or other which she had, but didn't know how to set it up or something). She needs to do know how to do this because she is having a show on Sunday. I have been remiss and not linked to it sooner, but if you are looking for something to do on Sunday and still need to buy presents for people, this might be a good way to solve both of those problems. Tommie will be at RollingGreen Nursery in Greenland with 22 other artists. She doesn't have a website yet, but if you look at the third of the pictures at the top of the page, it's Tommie's. Afterwards, since it is almost up to Maine, you could go to Kittery Trading Post and finish your shopping or to The Beach Pea and just relax or to Byrnes and Carlson and finish your shopping, depending on who you have to shop for.

I did want to report (in the spirit of long chains of events) a closing of a loop of sorts. You may recall that I told you (or you may not recall if I didn't include it in the blog--I thought I did) that when I was taking my boards, I mentioned it to a patient and she said she would hold her thumbs for me instead of the usual crossing  fingers. I really liked that and told many of my patients when they needed luck that I would hold my thumbs for them and I would tell them about this really wonderful lady who introduced me to the phrase. I liked it because it was cute and interesting and because it helped me to remember this woman I was very fond of. One of my patients got a kidney transplant when I was out with my leukemia and sent me a photo of himself in his hospital bed, holding his thumbs for me. I thought that was incredibly sweet and touching (and one of the hundreds reminders of why primary care is so rewarding). Last week, I happened to see the daughter of the original thumb holding patient and was able to tell her the story. She loved it, too. Who will we be holding our thumbs for next?

You may recall how in July-ish I ran into the mother of one of Ellie's chums from kindergarten in the grocery store and she sort of stared at the small part of bald head you could see under my hat and I just didn't feel like telling her I had leukemia so I didn't. Friday, I ran into the mom of a different kindergarten chum of Ellie's and she said to me, "Gosh, I didn't recognize you at first because of your hair cut. It looks nice." I thought to myself, "I don't feel like going into leukemia, chemo, neutropenic fever, second opinion, etc. right now." I said, "Thank you. I like it too." We both went on with our days and it was all good. I must be getting better. It's weird to think that there will be lots of people in my life who never know about this whole experience because I will meet them in the future when it's just like "o, I had a burst appendix in 1982. It was a tough couple of months recovering, but now I don't really think about it." (I still have my appendix, but as an example.)

For myself, I will wish a relaxing and fun day (we're going to Cambridge for one of Terry's friend's openings).  For you, I will wish the same.

(speaking of chains, I started thinking about Terry's friend's opening's poster's lettering's color. how many 's can one stack up?)

Thursday, December 6, 2012

Day 173 - journal recs and more

What a lazy day today was! I read a couple of journals and did some weaving and that was about it! I've been planning this weaving project for ages; I think I bought the yarn a few years ago and just haven't felt like doing it. I'm not sure why because it sure is beautiful. It's a nubby silk/wool blend and the idea is to do a nice overshot sort of pattern with the same warp and weft. I'll show you the front tomorrow when there is enough done to see the pattern.

About half of the warp I'm working on now.
As for journals: The Dec 6, 2012 NEJM is completely lacking in interest for me except for an OK Clinical problem-solving article. The Dec 4, 2012 Annals, however, is packed with stuff I thought was worth a real look. The first article was on "Estimating Overdiagnosis in low-dose CT Screening for Lung Cancer" and was from Italy. They had a bunch of people who were getting low dose CTs every year and they had a complicated protocol where they didn't tell people about small nodules without scary features and just repeated the CT in a year. If a lung cancer appeared one year that wasn't there the previous year, they assumed it was there with a size of 2 mm (just below their detection limit) and calculated the cancer's doubling time. About 25% of people had slow growing or indolent (doubling time of 400-599 days or 600+ days). Their suggestion was that these were likely to be "overdiagnosis." People with fast growing tumors had a mortality of 9% and people with slow or indolent tumors had a mortality of 0.9% per year. Kind of interesting, but only works if the patient has regular lung CTs.

Next of interest was an article about "Interventions to Improve Adherence to Self-administered Medications for Chronic Disease in the US." Big surprise: reduced out of pocket expenses, case management and patient education with behavioral support are useful. I think I have read other studies that found case management not helpful--even one that found it made mortality worse for (I'm pretty sure) COPD'ers and I think I have also read one study that found surprisingly that the co-pay did not make a difference to compliance (in this one study). I've never read that patient education has had a negative effect on compliance. At the back is an "In the Clinic" article about hep C. I didn't read it in any detail because the way I manage hep C is to get a hepatology consult. I know how to diagnosis, vaccinate and put in the consult request. That has been a successful strategy for me so far.

The final article of interest in the Annals (see what I mean?) was a review of "Comparative Effectiveness of Warfarin and New Oral Anticoagulants for the Management of A Fib and Venous Thromboembolism." So, you may not know that Warfarin stands for Wisconsin Alumni Research Fund (arin added to the end). I did med school in Minnesota, you see. So, the New Oral Anticoagulants (NOAC) are in one of two classes: factor Xa inhibitors or direct thrombin antagonists. Thrombin antagonists' names end in -agatran and there is only one on the market right now, dabagatran. Ximelagatran was taken off the market due to liver toxicity. Factor Xa inhibitors' names end in -xaban. There are four, only two of which I had heard, apixaban, rivaroxaban, edoxaban and betrixaban. It's kind of easy to remember which is which because direct Thrombin inhibitors are the agaTrans and factor Xa inhibitors are the Xabans. The direct thrombin inhibitors may not be all that important to remember because the only one left is being evaluated by the FDA for reports of excessive bleeding especially in elderly and renally impaired patients. Anyway, for Afib, the conglomeration of the evidence slightly favors but with a bar crossing 1.0 NOACs (0.78 to 1.02), best estimate 0.89. For venous thrombo embolism, the range is 0.48 to 2.10 for the risk ratio, best estimate 1.0. For adverse effects of fatal bleeding and major bleeding, NOACs were superior. For GI bleeding, warfarin was superior. With respect to MIs, factor Xa inhibs appear to be about equivalent to warfarin and direct thrombin inhibitors appear to be associated with MIs. People on factor Xa inhibs were about as  likely to discontinue the med as people on warfarin due to side effects, but people on direct thrombin inhibitors were more likely. It looks like they are all about equivalent for LFTs greater than 3x the upper limit or normal. It also appears that the studies that showed bigger benefits for NOACs had worse control of the INR in the warfarin arm (not surprisingly).

As for news of the previously leukemic body, I was a little bit sore from yesterday's exertions so I decided to take today off from the gym. I am looking forward to Planet Fitness tomorrow. I also have my second opinion date: January 2. I may have mentioned that I have to see pulmonary too and am working on getting that set up (the reason is that my CT scan is still not normal. Every time we look, it's abnormal in a different way so I'm thinking none of it can be too bad. John thinks it is probably post-chemo stuff. I was very happy to see the nodules go away, speaking of screening for lung cancer).
I haven't barfed in 48 hours. My family is so proud of me.
Since this a a complete pot pourri entry, here is a nice video about kids who play instruments in Paraguay.

For me, I am hoping for a restorative night's sleep. For you, restorative sleep is not a bad thing either.